FrontMatter.p65 2 1/28/03, 10:27 AM

ACKNOWLEDGMENTS

The contributions of many special people made this guide possib

Thanks go to Magda Barini-Garcia, MD, the Project Officer, who 

and managed the project’s progress and quality, and Joan Hollow

art and innovation assured the guide’s look and practicality. Cre

Kim Dickerson, who designed and produced the guide, and Susa

was the copy editor.



ABOUT THE EDITORS

Joseph F. O’Neill is Director of the White House Office of Nation

Prior to that he was Associate Administrator of the HIV/AIDS Bu

Health Resources and Services Administration, U. S. Departmen

and Human Services.



Peter A. Selwyn is Director of the Palliative Care Program at Mo

Center as well as Professor and Chairman of the Department of 

at the Albert Einstein College of Medicine.



Helen Schietinger has worked in the field of HIV/AIDS since 198

especially on palliative and community-based care.

A Clinical Guide to Supportive and Palliative Care for 

is dedicated to Belynda Dunn, an inspirational leader and bea

who brought hope, joy and love to so many people. Her faith was 

and sustained her throughout her life.



ii

Front Matter 1-24-03.p65 14
gy, , y 

Maryland, Baltimore, MD

Felicity Aulino

Open Society Institute

Project on Death in America

New York, NY

Anthony Back, MD

Associate Professor, Department of Medicine/

Oncology, University of Washington

Director of Palliative Care, VA Puget Sound

Health Care System, Seattle, WA

Magda Barini-García, MD, MPH

Chief Medical Officer, Division of Training

& Technical Assistance

HIV/AIDS Bureau, HRSA

Rockville, MD

Connie J Beehler, MD

Medical Director

Hospice at Riverside & Grant

Columbus, OH

William Breitbart, MD

Chief, Psychiatry Service, Department of

Psychiatry & Behavioral Sciences

Memorial Sloan-Kettering Cancer Center

New York, NY

Gary T Chiodo, DMD

Professor, Department of Community

Dentistry, School of Dentistry

Oregon Health & Science University

Portland, OR

J Randall Curtis, MD, MPH

Associate Professor of Medicine

Division of Pulmonary & Critical Care

University of Washington

Seattle, WA

Nima Eshghi, JD

Clinical Instructor

Harvard Law School

Cambridge, MA

gy 

Washington, DC

Kathleen M Foley, M

Director, Open Society 

Project on Death in Am

Memorial Sloan-Kette

New York, NY

Marshall Forstein, M

Assistant Professor of 

Harvard Medical Scho

The Cambridge Hospit

Boston, MA

Suzanne R Garnier, R

Health at Home, Home 

the Community Health 

San Francisco Departm

San Francisco, CA

Robert Greenwald, J

Senior Clinical Instruc

Harvard Law School

Cambridge, MA

Rocío Hurtado, MD

Clinical HIV Fellow at 

Hospital, Combined In

Fellow at Massachuse

and Brigham & Wome

Harvard Medical Scho

Nancy Hutton, MD

Associate Professor of 

Johns Hopkins Univer

Baltimore, MD

Jane M Ingham, MD, 

Director, Palliative Ca

Lombardi Cancer Cen

Associate Professor, D

Medicine Georgetown 

Center Washington, D

iii

Front Matter 1-24-03.p65 15
François-Xavier Bagno

Pediatrics

Director, Division of P

Immunology & Infecti

of Pediatrics, New Jer

Newark, NJ

Joseph F O’Neill, MD

Director, Office of Nat

The White House

Washington, DC

Margaret Perrone, R

Coordinator, Palliative 

University of Maryland 

Baltimore, MD

Christina M Puchalsk

Director, The George W

Spirituality and Healt

Assistant Professor of 

Medicine & Health Sc

Washington University

Elizabeth A Keene R

Bereavement Coordin

Compassionate Care

Johns Hopkins Childr

Baltimore, MD

Mimi Rivard, ANP, M

Clinical Care Coordin

Program, Montefiore M

Albert Einstein Colleg

Bronx, NY

David I Rosenstein, D

Professor & Chair, Dep

Dentistry, School of D

Oregon Health & Scie

Portland, OR

Rev Carlos Sandoval, 

Assistant Professor, D

University of Miami Sc

Director, Courtelis Ce

Oncology, Sylvester Co

Center, Miami, FL

Deputy Director of HIV Medicine

St Vincent’s Hospital-Manhattan

New York, NY

David J Kouba, MD, PhD

Department of Dermatology

Johns Hopkins University School of Medicine

Baltimore, MD

Eric L Krakauer, MD, PhD

Instructor in Medicine & Social Medicine

Department of Social Medicine, Harvard

Medical School, Associate Director,

Palliative Care Service,Massachusetts

General Hospital, Boston, MA

Harlee S Kutzen, MN, ACRN

HIV Palliative Care Nurse Specialist

PalCare - A Palliative Care Program for Persons

with Advanced HIV/AIDS

Project Director, Louisiana State University

Medical Center/HIV Division

New Orleans, LA

John F Linder, MSW, LCSW

Clinical Social Worker & Researcher

Department of Internal Medicine,

University of California at Davis,

UCD Cancer Center Davis, CA

Ciro R Martins, MD

Assistant Professor of Dermatology

School of Medicine

Johns Hopkins University

Baltimore, MD

Martha M McKinney, PhD

President

Community Health Solutions, Inc

Richmond, KY

Frederick J Meyers MD

Professor & Chair, Department of Internal

Medicine, University of California Davis

Health System, Sacramento, CA

iv

Front Matter 1-24-03.p65 16
Professor & Chairman

Department of Family Medicine

Director, Palliative Care Program

Montefiore Medical Center

Albert Einstein College of Medicine

Bronx, NY

Jan Stjernsward, MD, PhD, RRCP

International Director

Oxford International Centre

for Palliative Care

Oxford, United Kingdom

Daniel P Sulmasy, OFM, MD, PhD

Professor of Medicine

Director, Bioethics Institute

New York Medical College

New York, NY

Demia L Sundra, MPH

ASPH/CDC Research Fellow

National Center for Chronic Disease Prevention

& Health Promotion

Centers for Disease Control & Prevention

Atlanta, GA

Jean Tuthill, RN, MSN, CWOCN

Wound/Ostomy Consultant

Program Development/Clinical Consultation

Fairfax, CA

Michael Wohlfeiler, MD, JD

Medical Director for Special Immunology

Services, Mercy Hospital

Miami, FL

v

Front Matter 1-24-03.p65 17
Front Matter 1-24-03.p65 1

8
Chapter 2 Overview of Clinical Issues

Peter A Selwyn & Mimi Rivard . . . . . . . . . . . . . . . . . 

Part II Management of Advanced HIV Disease

Chapter 3 Assessment of Physical Symptoms

Jane M Ingham & Maria Farooqi . . . . . . . . . . . . . . . 

Chapter 4 Pain

William Breitbart . . . . . . . . . . . . . . . . . . . . . . . . . . . . 

Chapter 5 Constitutional Symptoms

Rocío Hurtado & Eric L Krakauer . . . . . . . . . . . . . . 

Chapter 6 Pulmonary Symptoms

Connie J Beehler . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 

Chapter 7 Gastrointestinal Symptoms

Michael Wohlfeiler . . . . . . . . . . . . . . . . . . . . . . . . . . . . 

Chapter 8 Oral Problems

David I Rosenstein & Gary T Chiodo . . . . . . . . . . . . 

Chapter 9 Dermatologic Problems

David J Kouba & Ciro R Martins . . . . . . . . . . . . . . . . 

Chapter 10 Psychiatric Problems

Marshall Forstein . . . . . . . . . . . . . . . . . . . . . . . . . . . . 

Chapter 11 Substance Use Problems

Joseph F O’Neill & Peter A Selwyn . . . . . . . . . . . . . . 

Chapter 12 The Care of Children and Adolescents

Nancy Hutton & James M Oleske . . . . . . . . . . . . . . . . 

Part III Psychosocial, Cultural and Ethical Issues

Chapter 13 Spiritual Care

Christina M Puchalski & Carlos Sandoval . . . . . . . 

Chapter 14 Culture and Care

Carlos Sandoval . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 

Chapter 15 Special Populations

Carla S Alexander & Helen Schietinger . . . . . . . . . . 

Chapter 16 Grief and Bereavement

Elizabeth A Keene Reder . . . . . . . . . . . . . . . . . . . . . . . 

Chapter 17 Ethical Issues

Lynn A Jansen, Barbara E Johnston & Daniel P Sul

Chapter 18 Legal and Financial Issues

Robert Greenwald & Nima Eshghi . . . . . . . . . . . . . . 

Chapter 19 Palliative Care in Resource-Poor Settings

Kathleen M Foley, Felicity Aulino & Jan Stjernsward 

Chapter 20 Care for the Caregiver

Joseph F O’Neill & Martha M McKinney . . . . . . . . . 

vii

Front Matter 1-24-03.p65 19
viii

Chapter 22 Facilitating the Transition to Home-Based and Hospic

Harlee S Kutzen . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 

Chapter 23 Medical Care in Advanced AIDS

Frederick J Meyers & John F Linder . . . . . . . . . . . . 

Chapter 24 Medical Care at the End of Life

Carla S Alexander, Anthony Back & Margaret Perro

Chapter 25 Prevention of Skin Breakdown

Jean Tuthill & Suzanne R Garnier . . . . . . . . . . . . . . 

Part V References for the Clinician

Chapter 26 Resources

Magda Barini-García & Demia L Sundra . . . . . . . . 

Chapter 27 Pharmacologic Interactions of Clinical Significance

Justina Edmunds-Ogbuokiri . . . . . . . . . . . . . . . . . . . 

Front Matter 1-24-03.p65 110
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

■ The Health Resources and Services Administration (HRSA) of the U

of Health and Human Services has as its mission the improvement of a

services for underserved and vulnerable populations. HRSA accom

partnering with community-based organizations in the delivery of he

with academic health centers in the education of health professionals

health departments in the areas of prevention, public health promoti

ery. Improved quality of care and quality of life are the goals of the pr

HRSA. To that end HRSA’s HIV/AIDS Bureau has embarked on the p

Guide to Supportive and Palliative Care for HIV/AIDS.

Through the work of visionaries in the fields of HIV/AIDS and palliativ

excellent HIV care can be provided by integrating the principles and 

care into the delivery of care and services to people living with HIV/A

tinuum of illness. This integration of services holds the promise of pat

care that is proactive in addressing the multitude of issues with which 

With this volume we seek to expand the definition of palliative care 

care’s full potential to improve the quality of care and the quality of life 

AIDS.

The HIV/AIDS Bureau, through its Working Group on Palliative Care 

following working definition:

Palliative care is patient- and family-centered care. 

quality of life by active anticipation, prevention, and 

suffering. It emphasizes use of an interdisciplinary tea

throughout the continuum of illness, placing critical 

on the building of respectful and trusting relationship

care addresses physical, intellectual, emotional, socia

tual needs. It facilitates patient autonomy, access to i

and choice.1

Palliative care is complementary care, not alternative care, and ther

vided only when disease-directed therapy fails or is unavailable. It is a 

tive perspective and approach only at the last stages of illness. One nee

associated with receiving a first HIV diagnosis or upon the psychologic

Joseph F ONeill, MD, MPH, and Magda BariniGarcía, M

Chpt 1 1-17-03.p65 11
2 U.S. Department of Health and Human Services • Health Resources and Services Administ

HIV disease. The central role of medication adherence is not to be unde

the course of disease, but other factors can be equally important in 

comes. These factors include a wide range of hard-to-control socioecon

characteristics: an understanding of the disease process; empowerme

health; a safe place to live; freedom from pain and distressing sympt

treatment for substance abuse, depression and other mental illness

friends, family and other caregivers, especially when functional status i

progression is ongoing. These challenges can be met successfully by usin

work to approach the patient, providers, caregivers, family, loved on

system.

This manual is organized to address the many aspects of palliative care 

the person living with HIV and AIDS. A wealth of expertise and exper

and palliative care has provided a unique document that expands the r

Part I: Introduction Provides our vision for the use of the guide and pr

key issues in HIV/AIDS and palliative care today.

Part II: Management of Advanced HIV Disease Addresses constitutio

much of the burden to patients in more advanced states of HIV disea

care of children and adolescents are covered in a chapter in this sect

stance use concerns are covered in this section as well.

Part III: Psychosocial, Cultural and Ethical Issues Focuses on the 

included in the palliative care approach, incorporating spirituality, ca

cial populations, and ethical and legal considerations. A special sec

care in resource-poor settings.

Part IV: Care at the End of Life Emphasizes the explicit aspects of 

when it has become clear that the patient is nearing the end of life. Th

ters on communication, the transition to home and hospice care, and 

breakdown.

Part V: References for the Clinician Provides a resource appendix h

sources for further reading and reference tools, and a comprehensive 

macologic considerations in using both HIV-related and palliative med

It is our sincere hope that you and your colleagues will find this guide u

principles and framework of palliative care into the practice of high q

Chpt 1 1-17-03.p65 2 1
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

1. HRSA Working Group on HIV and Palliative Care. Palliative and Supportive Care

July 2000. Available at www.hab.hrsa.gov

Chpt 1 1-17-03.p65 13
Chpt 1 1-17-03.p65 4 1
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

INTRODUCTION

■ The past two decades have seen both the emergence of AIDS as a ne

tious disease and its conversion from a rapidly fatal illness into a man

This pattern has been most marked in industrialized countries where 

cific therapies has been realized for many individuals living with HIV. H

‘highly active antiretroviral therapy’ (HAART), AIDS remains an impo

and mortality in many young adult populations, and attention to pallia

is an essential aspect of clinical care. In the early years of the AIDS ep

learn about palliative care by necessity, in the absence of any hope of c

advent of antiretroviral therapy and the ability to control HIV disease 

important to incorporate relevant aspects of palliative care in the com

of patients with AIDS. Rather than being ‘either-or,’ curative and pall

care need to be ‘both-and,’ and one paradigm need never fully subst

chapter will outline some of the important clinical issues in HIV pallia

will be addressed in greater detail in subsequent chapters.

EPIDEMIOLOGY

■ Starting in the early 1980’s, AIDS rapidly became the leading cause 

in the United States.1

 With advances in AIDS care and HIV-specific th

mortality rates began to decline, and with the introduction of the pro

the rates declined even more dramatically.2-7 However, the decline 

plateaued, and there remain approximately 15,000 deaths per year fro

number of deaths from AIDS dropped by 25% and 42% from the prec

1997, respectively, these figures dropped to 17% and 8% for 1998 and 

clines in death rates have not been uniform across all populations af

decreasing mortality has not been as pronounced among African-Am

has been among whites.4,8 In addition, the incidence of new HIV infe

have decreased, and has remained stable at approximately 40,000 n

result of these trends, AIDS-related mortality continues to be an imp

the number of patients living with HIV (i.e., the prevalence of AIDS) 

(Figure 2-1.)

Peter A Selwyn, MD, MPH, and Mimi Rivard, ANP, M

A condensed version of this chapter was previously published in the on

tions in End-of-Life Care as Selwyn PA, Rivard M. Palliative care for AID

tunities in the era of highly active anti-retroviral therapy. Innovations i

2002. www.edc.org/lastacts

Chpt 2 1-17-03.p65 15
6 U.S. Department of Health and Human Services • Health Resources and Services Administ

Figure 2-1: Estimated AIDS Incidence,* Deaths, and Prevalence, by Quarter-Year of Diagnosis/Death – United States, 1981 - 2000

Number

AIDSDeathsPrevalence

1993 Definition **implementation

20,00015,00010,000

5,000

25,000 

Chpt 2 1-17-03.p65 6 1
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

that has little impact on daily quality of life. For others, treatment has 

death to disability,’ with the emergence of a chronic disease phase ch

tions, remissions, and eventual decline and death from the illness,9

 a

AIDS diagnosis to death has lengthened.10 Thus, over a remarkably s

historical evolution of HIV disease—for which the rapid disease cours

once resembled that of untreatable fatal cancers—has shifted to a t

chronic, progressive illnesses such as congestive heart failure, chron

disease, or hepatic cirrhosis, with much more variability in outcome

assessment of prognosis and outcomes is thus much more complex than 

 As AIDS-specific mortality has declined, surveillance data and clinic

that mortality among patients with HIV has proportionally increased 

ties such as hepatitis B and C, co-occurring malignancies (both AIDS

defining cancers), and substance abuse-related deaths.9,12-16 In addit

even the benefit of HAART is not always attainable, due to lack of ac

adhere to effective treatment regimens, active substance use or othe

gressive viral resistance despite therapy, serious other co-morbidities

toxicities. For all these reasons, comprehensive AIDS care must contin

life issues even as treatment continues to advance. Just as we must adv

HAART for all patients, so too must we be ready to provide needed an

care even after HAART is no longer a life-extending option. The need to 

tive and curative approaches in HIV care is even more important than 

era: the availability of treatment does not give clinicians the luxury o

issues posed by a chronic progressive illness and its management over 

CENTRALITY OF PALLIATIVE CARE IN HIV CARE

■ In the early years of the AIDS epidemic, a cohort of physicians and ot

themselves confronted with a disease that they could not understand

time in which the narrow medical model of care—isolating specific 

then focusing on treating the pathology—was totally inadequate in th

this disease and its effects on patients and their families. Paradoxical

clinicians learned the importance of being present, of accompanying 

and being with patients and families as they grappled with the critical i

Clinicians learned how to focus on the goals of care, helping to empo

context of a life-threatening illness and discussing treatment decisions 

and care preferences of patient and family, rather than making decisi

occurs with the more one-sided and hierarchical model that often pred

encounter). When disease could not be prevented or even treated, it w

relief by treating pain, other symptoms, and the overall suffering caus

Patients’ needs were understood to be multi-dimensional—medical, 

tual—and they needed to be addressed in a multi-disciplinary model o

the complexity of these needs, especially at the end of life. Families an

Chpt 2 1-17-03.p65 7 1
8 U.S. Department of Health and Human Services • Health Resources and Services Administ

Figure 2-2: Trajectories of Illness over Time in Chronic, Fatal Diseases

Functional Disability or Severity of Illness Cancer (or “Pre-HAART” AIDS)

Death

CongestiveHeart Failure(or AIDS inHAART era)

Death

Chpt 2 1-17-03.p65 8 1
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

of palliative care remain central to the routine care of patients with HI

era. Indeed, the widely used World Health Organization definition for p

appropriate and timely description of comprehensive care for patient

ease:

“Palliative medicine is the study and management of patient

gressive, far advanced disease for whom the prognosis is limit

care is the quality of life. [It is] the active total care of patients w

responsive to curative treatment. Control of pain, of other sym

chological, social, and spiritual problems, is paramount. The 

care is achievement of the best quality of life for patients and t

What is also striking is the emergence of a new cohort of HIV care pr

through that earlier era and who have learned about HIV care more 

paradigm of HAART. Not surprisingly, this paradigm tends to be more 

less likely to incorporate end-of-life and palliative care issues since, tha

are less inescapable than they previously had been. However, it is imp

the curative vs. palliative dichotomy is a false one. HIV care has evolv

time with the rapid development of disease-specific therapy, although 

liative and curative approaches has always been present. Since the ear

several mini-‘paradigm shifts’ in which the hope of cure for AIDS or the 

of HIV therapy have led prematurely to extreme optimism or pessimism

schematically in Figure 2-3. The overall direction has been toward m

modifying therapy, but the curve has oscillated back and forth, and e

mism of the late 1990’s following the introduction of the protease inhib

ers are currently speculating about the likelihood of viral eradication o

In fact, perhaps a more sober assessment would lead one to conclud

progressive disease that may be effectively managed in some patients b

erable morbidity and mortality in others. As such, while we eagerly em

any benefits of HAART and other disease-specific therapies, we must a

pate and address the important aspects of palliative and end-of-life car

our patients will be facing at some point during the course of their illne

risk of isolating or unconsciously abandoning our patients when our 

effective or of being ill-prepared to help and accompany them through 

disease. The more we focus on the therapy, the less we tend to focus 

some providers experience growing frustration with patients who do n

the conflict over adherence may becomes the main platform for inte

between provider and patient. This conflict can eventually become dys

patients who refuse therapy outright, which may threaten the basis o

Chpt 2 1-17-03.p65 9 1
10 U.S. Department of Health and Human Services • Health Resources and Services Administ

Figure 2-3: Evolution of HIV Treatment Paradigms 1981 - 2001

Therapeutic Paradigm

Berlin AIDSConferenceConcorde Trial

Introductionof ProteaseInhibitors,AdditionalNRTI’s/NNRTI’s

Introduction ofAdditional NRTIsand NNRTIs

First AIDS

Curative

patient and provider can interact in ways that emphasize the totality 

adherence to recommended antiretroviral regimens.

Rather than the false dichotomy of either curative or palliative care

that both approaches need to be considered throughout the course o

grated approach is represented graphically in Figures 2-4a and 2-4b. Ra

Chpt 2 1-17-03.p65 10 1
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

Source: World Health Organization. Cancer Pain Relief and Palliative Care, Report 

Publication #1100804. Geneva: World Health Organization, 1990.

Figure 2-4b: Integrated Model Including Both Curative and 

for Chronic Progressive Illness

Source: World Health Organization. Cancer Pain Relief and Palliative Care, Report 

Publication #1100804. Geneva: World Health Organization, 1990.

Chpt 2 1-17-03.p65 11 1
12 U.S. Department of Health and Human Services • Health Resources and Services Administ

nate (e.g., HAART, specific prophylactic regimens to prevent opportu

the later phases of AIDS, palliative approaches become more importa

pain, symptoms, and quality-of-life issues in addition to prolongatio

However, as noted above, this is not simply ‘either-or,’ but rather ‘bo

nausea and vomiting and gastrointestinal toxicity from HAART may be a 

good adherence with antiretroviral therapy, and treating CMV retiniti

daily intravenous ganciclovir or foscarnet may be an important quali

HAART no longer has a role in reversing the course of illness. Thus, it 

integrated model, which allows both curative and palliative elements 

comprehensive care of the patient.

As will also be emphasized throughout this guide, this integrated mo

realized when it encompasses all the contributions of an interdisciplin

the clinical team becomes even more important as patients approach 

tients’ physical comfort needs have been addressed, important emot

can often be done. The team—including members from medicine, n

pastoral care—can become an integral part of the patient and family’s 

out the death and dying process. Patients and families experience th

medical, psychological, social, and spiritual dimensions), and the in

best implement a biopsychosocial approach to care, regardless of whic

any given time. The complexity of AIDS in all these dimensions require

sive, collaborative, and multi-leveled response.

For many clinicians involved in the first phase of the AIDS epidemic, i

not cure to teach us the true meaning of healing. It is our hope that the

as we strive to provide our patients with all the best that HIV therapy 

time as we seek to help them and their loved ones navigate the complex 

and its changing impact on their lives.

PAIN AND SYMPTOM MANAGEMENT

■ Since early in the epidemic, clinical studies have documented a hig

other symptoms in patients with AIDS.19-22 Pain in AIDS has been attr

1. The effects of specific opportunistic infections (e.g., headache wi

tis, visceral abdominal pain with disseminated Mycobacterium 

infection)

2. The effects of HIV itself or the body’s immune response to it (e.g.

opathy, HIV-related myopathy)

3. The effects of medications used to treat HIV disease (e.g., dideo

ripheral neuropathy, zidovudine-related headache, protease inhibi

nal distress)

4. The non-specific effects of chronic debilitating illness, along with ot

Chpt 2 1-17-03.p65 12 1
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

patients may thus be vulnerable to new complications and pain, as in 

prevalence of peripheral neuropathy which occurred with longer surviv

Center AIDS Cohort Study.23 Further, in a recent example of the poten

and disease-specific therapies in AIDS, analysis of data from an ongo

study found that the severity of HIV-related neuropathy was associate

levels – suggesting that antiretroviral therapy itself might in fact be u

venting this painful syndrome.24 In addition, while pain due to opportun

diminished with the advent of HAART and more effective prophylact

tions themselves may cause pain and other symptoms, e.g. the antiretro

to above, which may compromise effective treatment unless the symp

palliated.

Despite the high prevalence of pain in AIDS, several studies have also d

patients with AIDS is likely to be under-diagnosed and under-treated

nose and treat may reflect both the general under-recognition of pain b

the additional reluctance to consider seriously any self-report of pain 

of substance use problems. Moreover, recent reports have document

ethnicity may be a risk factor for inadequate analgesia in general in m

even the physical availability of narcotic pain medication may be limit

poor urban neighborhoods where HIV infection may also be concentra

Regardless of the possible explanations for under-treatment of pain, t

with AIDS are at risk for significant pain and the resulting diminishe

come which in most cases could be prevented with adequate pain asses

As described in Chapters 4 (Pain) and 11 (Substance Use Problems), 

agement has advanced considerably in recent years. It is now fully po

pain effectively in patients with AIDS, including substance users, usin

techniques, rational decisionmaking, evidence-based practice, and c

pain management tools should be as much a part of the pharmaceuti

providers as antiretrovirals and prophylactic agents.

In addition to pain, patients with AIDS have been found to have a h

symptoms, particularly but not exclusively in the advanced stages of t

one recent study suggested that physicians frequently fail to identify 

symptoms reported by patients with AIDS.35 Symptoms have included a 

psychological conditions, such as fatigue, anorexia, weight loss, depressi

nausea and vomiting, diarrhea, cough, dyspnea, fever, sweats, pruritus, e

symptoms in AIDS by organ system. Table 2-2 summarizes the findin

that have examined the symptom burden in patients with AIDS in di

striking that these studies, conducted in the United Kingdom, Canada, F

a remarkable consistency of symptoms across populations even with di

different time periods, and varying methods for determining the preva

Chpt 2 1-17-03.p65 13 1
14 U.S. Department of Health and Human Services • Health Resources and Services Administ

• Fever, sweats, or chills (51%)

• Diarrhea (51%)

• Nausea or anorexia (50%)

• Numbness, tingling, or pain in hands/feet (49%)

• Headache (39%)

• Weight loss (37%)

• Vaginal discharge, pain, or irritation (36%)

• Sinus infection or pain (35%)

• Visual problems (32%)

• Cough or dyspnea (30%)

Another study of AIDS outpatients receiving care in New York in the e

of 16.7 current symptoms (using the Memorial Symptom Assessment S

common were worrying (86%), fatigue (85%), sadness (82%), and pain 

lations as well, the concordance of symptom types with those in the pre

is noteworthy, as is the high prevalence of symptoms in relatively non

patients with HIV.

Pain Constitution

• Neuropathic • Fatigue / we

• Nociceptive • Anorexia / w

– Somatic • Fever

– Visceral • Sweats

Gastrointestinal Neurologic

• Nausea / vomiting • Delirium / a

• Diarrhea • Dementia

• Constipation • Depression

Respiratory Dermatolog

• Dyspnea • Dry Skin

• Cough • Pruritis

• Respiratory Secretions • Decubiti / sk

Table 2-1: Common Symptoms in HIV / AIDS

Chpt 2 1-17-03.p65 14 1
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

(U.K.) (Canada) (Italy) 

(n=100) (n=100) (n=1128) 

% (rank) % (rank) % (rank) 

Weight loss 85%(1)! 91%(1)§ —- 

Anorexia 44%(3) —- 34%(2) 

Pain 71%(2) 63%(3) 29%(4) 

Cough 30%(5) 34%(8) 32%(3) 

Dyspnea / resp. symptoms 17%(11) 48%(5) 19%(6) 

Fatigue — ** 77%(2) 55%(1) 

Nausea / vomiting 24%(8) 35%(7) 22%(5) 

Cognitive dysfunction 32%(4) 43%(6) —- 

Depression 26%(7) 32%(9)* —- 

Anxiety —- —- —- 

Diarrhea 23%(9) —- 11%(8) 

Mouth sores —- —- —- 

Fever / sweats —- —- —- 

Pruritis / dry skin 27%(6) 24%(11) 17%(7) 

Constipation 22%(10) 23%(12) —- 

Visual loss —- 25%(10) 12%(9) 

Headache 11%(12) —- —- 

Hemiparesis / ataxia —- —- —- 

Incontinence —- 55%(4) —- 

Insomnia —- —- —- 

! Includes fatigue * Includes anxiety

§ Includes anorexia ** Indicates that the symptom 

separate category for this s

Sources: References 30, 31, 32, 33, 34.

Chpt 2 1-17-03.p65 15 1
16 U.S. Department of Health and Human Services • Health Resources and Services Administ

malaise). As with studies of the prevalence of pain, much of the obs

garding symptom prevalence in AIDS was generated in the pre- or e

specific effects of certain opportunistic infections may have diminish

become less common.3, 7, 41 Nevertheless, the challenges of symptom man

with several factors:

1. The prolongation of the chronic disease phase in some patients, 

protracted late-stage course described above, requiring more sus

plex symptom management in chronically ill patients;

2. The recognition of the wide cumulative range of drug toxicities an

which occur in patients on long-term antiretroviral therapy;

3. The assessment of the contribution of drug toxicities vs. the und

progression, raising important clinical issues regarding the com

toxicity of different therapeutic options (e.g., balancing short-ter

term prolongation of life in a patient contemplating a potentially 

men, deciding whether disease-specific therapy may also in fact ha

symptoms in a given situation, etc.);

4. The emergence of co-existing co-morbid conditions that have comp

of patients with AIDS, including chronic viral hepatitis (especially 

titis C), and chronic co-morbid psychiatric illness and substanc

AIDS.42-44

As with the management of pain, clinicians caring for patients with A

with the science and practice of palliative medicine, which has emerg

cialty receiving increased attention in the United States and elsewh

States is a relative newcomer to the field, with much of the scientific a

tion to palliative medicine having emanated first from the United Kin

literature of palliative medicine has documented impressive advance

elucidation of pathophysiology and treatment of many of the common sy

above, such as nausea and vomiting, dyspnea, fatigue, and weight loss.2

included palliative care in the context of AIDS.46 Much recent work h

psychopharmacologic treatment of depression and anxiety and other p

ing the treatment of such conditions at the end of life,47 and many tre

these conditions as well. These options will be discussed in more deta

tional Symptoms, and Chapter 10, Psychiatric Problems, respectively.

Although some complicated syndromes in symptom management, as in 

benefit from the input of a palliative care specialist, in many cases pr

can identify and treat a wide range of AIDS-related symptoms using s

cine strategies that will both enhance patients’ quality of life and also 

of adherence to disease-specific therapy in cases in which this is still an 

with both realms of care should be part of the clinical repertoire of all A

Chpt 2 1-17-03.p65 16 1
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As was noted in an editorial in the journal Pain in 1986:

“Up to the 19th century, most medical care related to the amelior

while the natural history of the disease took its course toward 

By 1900, doctors and patients alike had turned to a search f

ultimate cure. In the course of this new direction, symptoms w

side as sign posts along a highway, which was being driven to

destination. Therapy directed at the signposts was denigrated 

merely symptomatic...[Yet] the immediate origins of misery a

immediate attention while the long-term search for basic cur

methods of care and caring had to be rediscovered and the bes

cine has to be turned to the task of new study and therapy spec

pain.” 49

The same combined strategy is no less relevant to HIV care than to me

STRATEGIES AND GOALS OF CARE

■ As defined above, palliative medicine seeks to provide the best qual

families using a model in which the goals of care are collaboratively de

ers according to the wishes of patients and families. This model emp

collaboration, and the willingness to accept patient-focused outcomes 

spect patients’ wishes regarding such important issues as quality of lif

Table 2-3 summarizes some of the key aspects of the philosophy of p

palliative philosophy comes from a model of care that is distinctly dif

hierarchical, and physician-dominated model that characterizes muc

cal care, especially for diseases that have potentially effective therapi

The more collaborative palliative approach—one in which uncertaint

tients and their care providers work through difficult decisions with 

control the outcome, and in which there are many ambiguities and nu

answer’—was one that defined much of AIDS care in the pre-HAART 

clinicians learned to work together with patients and families to clari

mine the important issues related to quality of life and the end of lif

helping patients and families negotiate the complexities of progressiv

With the arrival of more effective disease-specific therapy, much of the 

curative or quasi-curative therapies for which the goals of treatment 

form, and physician-generated. This guide seeks to provide the rationa

porating the more collaborative palliative approach into the routine 

Chpt 2 1-17-03.p65 17 1
18 U.S. Department of Health and Human Services • Health Resources and Services Administ

and interactions of clinicians and their patients. The intent is not to esch

the importance of achieving certain objectively measurable outcomes 

to achieve an undetectable HIV viral load or a sustained rise in CD4+ ce

age care providers to recognize that above all it is the patient who must 

that the goals of care are for the patient and not the physician. For in

focus on antiretroviral treatment protocols and the technical details o

justice to the patient’s condition nor ultimately promote a meaningfu

tionship.

Focusing on the patient- and family-centered goals of care ensures tha

which do not violate important concerns of the patient and family. Cu

types of interventions can be offered, not unilaterally and driven by 

algorithms but rather collaboratively and driven by the priorities and 

family. Some of this work takes time and may be more open-ended than 

results and medication adherence that has come to dominate much of 

office visits with patients on HAART. This collaborative approach wi

challenge to busy primary care providers who already experience signi

possibly increased numbers of longer-surviving HIV-infected patients 

theless, if we are to be effective as care providers for patients and famil

it is fundamentally important to work within this collaborative, compr

verse expertise and interdisciplinary teamwork, not an auth

• Goals of care include relief of suffering, control of symptoms

tional capacity.

• Supports neither goal of cure nor the hastening or prolongin

• Considers patients’ subjective experience (e.g., pain, other sy

tant as objective clinical data.

• Diagnosis not predetermined goal: only pursued if conform

goals of care.

• Death not equated with defeat but rather is seen as natur

sponse of the clinician should be to comfort, not withdraw.

• Management plan tailored specifically to each patient, acco

and preferences, not decided unilaterally by physician.

Source: Fox E. Predominance of the curative model of medical care. JAMA 278:761-

Chpt 2 1-17-03.p65 18 1
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2. Aggressive anti-emetic therapy for protease inhibitor-induced na

ternatively, revision or even discontinuation of antiretroviral thera

unable to be managed successfully;

3. Continued suppressive therapy with intravenous foscarnet or ganc

or intravenous amphotericin B for azole-resistant candidiasis, ev

tion of antiretroviral therapy and other prophylactic regimens in a 

4. Palliative treatment of disseminated MAC (e.g., with anti-pyretics

corticosteroids) in patients with advanced disease unwilling or unab

5. Withdrawal of MAC or PCP prophylaxis in patients expected to die 

6. Withdrawal of HAART after evident treatment ‘failure,’ with asse

well as symbolic and emotional value;

7. Decisions to withdraw or forego artificial nutrition or hydration in 

tain oral intake, involving assessment of patients’ wishes, funct

quality-of-life concerns, and social and cultural values;

8. Realistic vs. false hopes regarding decisions to initiate HAART or “s

stage patients (e.g., the possibility for a potentially disease-reversin

therapy, vs. the possibility that the patient may not respond, with a

tic ambiguities and challenges for counseling patient/family abou

All of the scenarios above involve decisions that need to be informed b

and risk-benefit analysis as well as by the priorities, values, and pre

families. In all these scenarios it should be clear that decisions must 

goals of care, including such factors as:

• The relative values of quality of life or prolongation of life

• The use of aggressive palliative care interventions to help mit

HIV-specific medications

• The use of certain disease-specific therapies primarily for p

intent

• The decision not to prolong life ‘no matter what,’ once a cer

had been reached (e.g., progressive dementia or the inability 

or medications)

Clearly, this type of decisionmaking takes place in much more ambiguo

than the simple assessment of antiretroviral efficacy by measuring su

ers, but it is no less important and in many ways more challenging.

Table 2-4 lists common symptoms in AIDS along with their varied po

amples of both disease-specific therapies and palliative interventions. 

types of approach might be appropriate in a given situation, depending 

stage, functional status, symptom burden, risk and potential benefit o

care preferences and goals.

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20 U.S. Department of Health and Human Services • Health Resources and Services Administ

Table 2-4: Common Symptoms in Patients with AIDS and Possible Disease-Specific and Palliative Interventions Possible Causes Disease-Specific Rx Palliative Rx Constitutional Pain Fatigue, weakness Weight loss, anorexia Fevers, sweats Nociceptive -Somatic -Visceral Neuropathic AIDS Opportunistic Infections Anemia HIV Malignancy MAC CMV HIV Lymphoma Opportunistic infections, HIV-related malignancies, non-specific HIV-related peripheral neuropathy 

HAART Treat specific infections Erythropoeitin, transfusion HAART Chemotherapy Nutritional support/ Enteral feedings Azithromycin, ethambutol Ganciclovir, foscarnet HAART Chemotherapy Treat specific disease entities HAART 

Corticosteroids (prednisone, dexamPsychostimulants (methylphenidindextroamphetamine, modafinil) Corticosteroids Testosterone/ androgens Oxandrolone Megestrol acetate Dronabinol Recombinant growth hormone NSAIDS (ibuprofen, indomethicin, Corticosteroids Anti-cholinergics (hyoscine, thioridH2-antagonists (cimetidine) NSAIDS Opioids Corticosteroids NSAIDS 

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Possible Causes Disease-Specific Rx Palliative Rx Esophageal candidiasis CMV HAART MAC Cryptosporidiosis CMV Microsporidiosis Other intestinal parasites Bacterial gastroenteritis Malabsorption Dehydration M

li

Gastrointestinal Table 2-4: Common Symptoms in Patients with AIDS and Possible Disease-Specific and Palliative Interventions (continued) Nausea/ Vomiting Diarrhea Constipation Fluconazole, amphotericin-B Ganciclovir, foscarnet Change antiretroviral regimen Azithromycin, ethambutol Paromomycin Ganciclovir, foscarnet Albendazole Other anti-parasitic agents Other antibiotics Hydration R

di

i

/

h

h

Dopamine antagonists (haloperidolProkinetic agents (metaclopromidAntihistamines (diphenhydramineAnticholinergics (hyoscine, scopalSerotonin antagonists (granisetrondolasetron) H2-antagonists (cimetidine) Proton pump inhibitors (omeprazoSomatostatin analogues (octreotidBenzodiazepines (lorazepam) Corticosteroids Bismuth, methylcellulose, kaolin Diphenoxylate + atropine Loperamide Octreotide Tincture of opium (paregoric) Activity/diet P

h

l

i

i

id

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22 U.S. Department of Health and Human Services • Health Resources and Services Administ

Possible Causes Disease-Specific Rx Palliative Rx PCP Bacterial pneumonia Anemia Pleural effusion/mass/ obstruction Decreased respiratory muscle function PCP, bacterial pneumonia TBFluid shifts, ineffective cough, sepsis, pneumonia Dehydration End-stage renal disease End-stage liver disease 

Respiratory Table 2-4: Common Symptoms in Patients with AIDS and Possible Disease-Specific and Palliative Interventions (continued) Dyspnea Cough Increased secretions (‘death rattle’) Dry skin Trimethoprim/sulfamethoxazole, pentamidine, atovaquone etc. Other antibiotics Erythropoetin, tranfusion Drainage/radiation/surgery Anti-infective therapy (as above) Antituberculous chemotherapy Antibiotics as indicated Hydration Dialysis 

Use of fan, open windows, oxygen Opioids Bronchodilators Methylxanthines Benzodiazepines (lorazepam) Cough suppressants (dextromethoother opioids) Decongestants, expectorants (varioAnticholinergics (atropine, hyoscinglycopyrrolate) Fluid restriction Discontinue intravenous fluids Emollients +/- salicylates Lubricating ointments Dermatologic

Chpt 2 1-17-03.p65 22 1
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Possible Causes Disease-Specific Rx Palliative Rx Fungal infection End-stage renal disease End-stage liver disease Dehydration Eosinophilic follicultitis Poor nutrition Decreased mobility Prolonged bed rest Electrolyte imbalances Dehydration Toxoplasmosis Cryptococcal meningitis 

Table 2-4: Common Symptoms in Patients with AIDS and Possible Disease-Specific and Palliative Interventions (continued) Pruritis Decubiti/Pressure Sores Delirium/Agitation 

Antifungals Dialysis Hydration Steroids, antifungals Nutrition Increase mobility Correct imbalances Hydration Sulfadiazine/pyrimethamine, etc. Antifungals 

Topical agents (menthol, phenol, ccapsaicin) Antihistamines (diphenhydramineCorticosteroids Serotonin antagonists (ondansetroOpioid antagonists (naloxone, naltAnti-depressants Anxiolytics Neuroleptics Thalidomide (?) Prevention (nutrition, mobility, skiWound protection (semi-permeable film/hydrocolloid dressing) Debridement (normal saline, enzymalginates) Neuroleptics (haloperidol, risperidchlorpromazine) Benzodiazepines (lorazepam, mida

Dermatologic (continuted) Neuropsychiatric

Chpt 2 1-17-03.p65 23 1
24 U.S. Department of Health and Human Services • Health Resources and Services Administ

teapy, ceoteapeutc eges, etc.)

• The importance of quality-of-life elements in these decisio

potentially toxic, time-intensive intervention that might pro

tive measures that would improve short-term quality of life b

• Decisions about particular medical interventions (e.g., cardio

artificial nutrition or hydration, re-hospitalization of a patient 

Psychosocial issues that need to be addressed may include:

• Family ambivalence or conflict about care plan decisions

• Guilt or other emotional ‘unfinished business’ that may affect 

planning

• Concerns that any limitation on curative treatment intervent

donment of the patient or lack of commitment or concern 

provider

(Psychosocial issues will be discussed in more detail later.)

Discussions about advance care planning should be ongoing, anticip

multiple occasions as needed over time. These issues should be ‘normal

and incorporated into routine care, rather than waiting until a cris

threatening illness or the loss of decisional capacity to begin to addres

an indication of the discomfort that providers feel within the either-or 

palliative care that they may unconsciously defer these discussions un

tously dying, implying that discussing goals of care and end-of-life dec

inappropriate within the current therapeutic model. However, the appro

to be positive, respectful, and focused on the values, concerns, cultura

ences of the patient and family. The family and/or other involved individ

earlier rather than later in these discussions, and decisions about heal

surrogate decisionmakers need to be made clearly and communicate

viduals.

Despite the complexity of these psychosocial issues in the setting of H

are often young adults who are faced with a life-threatening illness ear

have young families, and who suffer from the stigma and social vulnera

people with AIDS—patients have been found to be unlikely to have di

their care providers.51, 52 This finding was even more pronounced amon

Latinos than whites.51, 52 The lack of discussions about advance care p

importance of clinicians pro-actively bringing up these issues—and se

riers to discussions53—before they emerge in the setting of an acute cr

ate life-and-death decision. Rather than being a sign of withholding tr

ues on patients, anticipatory advance care planning is a way to empow

to make decisions that are true to their basic beliefs, values, and conc

way to achieve this kind of decisionmaking is in the context of an inter

cian, nurse, social worker, chaplain, and other disciplines as appropr

Chpt 2 1-17-03.p65 24 1
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PROGNOSTIC UNCERTAINTY AND PALLIATIVE CARE

■ Even as we have been emphasizing the importance of focusing on th

ing treatment decisions, it must be recognized that prognostication and 

outcomes in the course of HIV disease are much less certain and unifo

pre-HAART era. Ironically, it is precisely as we are reminded of the imp

goals of care—now that there are choices, we need to ensure that deci

these choices—that we are also reminded that prognosis and the ‘nat

tion are much less clear-cut than they were previously. While CD4+ cou

are excellent measures of response to therapy and indeed of prognosis 

of effective antiretroviral therapy—or alternatively the lack of this pos

viable treatment options—can completely alter prognosis for people w

 The National Hospice Organization’s 1996 Guidelines for determining 

cancer diagnoses attempted to generate criteria indicative of likely le

nosis for patients with AIDS (see Table 2-5).54 While some of these cl

useful prognostic markers, none of them would likely override the pot

effective antiretroviral therapy if this were still an option. Indeed, s

referred to hospice, received palliative care, and expected to die, onl

and their care providers with their miraculous recoveries (the ‘Lazaru

tive HAART. In these cases, forcing patients to choose an ‘either-or’ ap

unconscionable. We must both be able to prognosticate as best we ca

the patient’s specific treatment history and options, and be prepared 

estimates may be made irrelevant by the potential impact of therapy. Th

integration of palliative and curative approaches both more challeng

than ever before.

One issue that frequently arises related to the complexities of prog

decisionmaking in the HAART era involves the discontinuation of an

patient who is either not responding or felt to be unlikely to respond to 

there is controversy about whether to stop therapy even in the face of 

ure (i.e., the concept of viral ‘fitness’ and possible benefit of antiretrov

viral replication dynamics even in the setting of high viral loads and l

must recognize that the benefits of antiretroviral therapy, even when e

ate, and that they must be evaluated in light of potential favorable i

decline. Thus, it is reasonable to question whether it makes therap

antiretroviral therapy in a patient dying of lung cancer or end-stage l

not the medications could even be tolerated in this setting—or in t

progressive symptomatic HIV disease. In these instances, antiretroviral 

to have any meaningful benefit and will probably only add to the th

patient who is clearly dying yet for whom aggressive therapy is being 

some cases, the patient may have such a strong emotional investment in 

it is completely reasonable to continue it, although it should be clea

Chpt 2 1-17-03.p65 25 1
26 U.S. Department of Health and Human Services • Health Resources and Services Administ

psychosocial as a medical decision, if not more so. These examples un

of clarifying the goals of therapy, assessing the potential impact and li

therapy, and working collaboratively with patients to determine prioriti

all aspects of a good patient-provider relationship that become obscure

is on the treatment instead of on the patient.

PSYCHOSOCIAL AND FAMILY ISSUES

■ AIDS has always presented unique psychosocial problems for pat

providers: a life-threatening illness affecting young adults, often with 

members, raising difficult issues of premature death, unfinished busin

ship. Guilt, shame, anger, and despair may compound the emotional 

terms with this progressive, incurable infectious disease. Some of the 

infection remain socially unacceptable in certain contexts, and the as

Note: All of these factors may potentially be over-ridden in the setting of effect

Source: Adapted from National Hospice Organization. Guidelines for Determining P

Selected Non-Cancer Diagnoses. Alexandria, VA: National Hospice Organization, 199

HIV RNA > 100,000 copies / ml

serum albumin < 2.5 gm / dl

CLINICAL CONDITIONS

CNS lymphoma

PML

cryptosporidiosis

severe wasting

disseminated MAC

visceral Kaposi’s sarcoma

advanced AIDS dementia

toxoplasmosis

severe cardiomyopathy

chronic severe diarrhea

life-threatening malignancies

advanced end-organ failure (e.g., liver failure, congestive h

COPD, renal failure not on dialysis)

Chpt 2 1-17-03.p65 26 1
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arisen in the HAART era that are particularly relevant to palliative and 

long awaited impact of HAART—beginning most notably in 1996—a

decline in death rates from AIDS, the inevitability of short-term mo

phenomenon has even resulted in the identification of new potential st

life’ agenda” in patients who must now prepare to go on living inste

While the decreased risk of death has clearly been a welcome relie

caregivers, it also has had the tendency in some cases to isolate those 

AIDS in the HAART era, at a time when people’s expectations have be

by the promise of effective antiretroviral therapy.17 As noted above, w

creased and the rate of decline has slowed, there are still over 15,000 p

AIDS in the United States, with the prospect that this number might co

the compounding co-morbidities of hepatitis B and C, substance abu

occurring cancers, and other potentially fatal conditions are taken int

In the HAART era, the formerly grim scenario of AIDS as a uniformly an

no longer the usual outcome—dying from AIDS has now passed from ‘fa

in the pre-HAART era death came swiftly to AIDS patients, the new 

capable of extending life for many years—at least in some patients. Un

who do not benefit from the new drugs may be blamed for their ‘failure

or to adhere to the treatment regimen. These dying patients are somet

as the ‘anomalies’ who are not able to benefit from the purported lifes

antiretroviral therapy. A new form of guilt may be seen in both pati

faulting poor therapy choices or poor adherence as the ‘cause’ of a p

advent of HAART, there are both greater possibilities for therapeu

opportunities for therapeutic failure, regret, and guilt over perceived 

opportunities.

Given the importance of adherence to HAART as a major factor in de

cess of a treatment regimen, it is not surprising that so much of the 

clinical interaction has become focused on adherence to therapy and 

laboratory tests such as CD4+ counts and HIV viral load assays. Howe

ence has tended to reframe the patient-provider relationship in a ne

outside of the context of the experience of life-threatening illness and 

death. As with much of medicine in general, the more narrowly one op

cal model, the less comfortable one tends to be with end-of-life issu

represents a ‘failure to cure.’ Consciously or not, HIV care providers in 

inadequate to help patients deal with impending death, since their rol

curing or fighting back the disease. Tragically, providers may feel so o

withdraw emotionally from patients and become less involved in the

death, so that patients experience both the losses imposed by the illne

of a trusted long-term relationship with their care provider.

Chpt 2 1-17-03.p65 27 1
28 U.S. Department of Health and Human Services • Health Resources and Services Administ

here with recommended therapy—will help to maintain and enhance 

The fact that the new generation of HIV caregivers has not had the ex

colleagues—in which there was no avoidance of death and no immediat

it with disease-specific therapy—may also be a contributing factor in th

experience in addressing end-of-life issues. While we would hope th

early years of the AIDS epidemic will never have to be repeated, we ca

lessons that it brought regarding the importance of accompanying pati

death, of not seeing death as an automatic failure of the clinician, of a

importance of ‘being there,’ and of understanding the role of the care

necessarily ‘curing.’58 As outlined above regarding palliative and dise

strategy should not be ‘either-or,’ but rather ‘both-and,’ and providers 

competent in anticipating and addressing the end-of-life issues as 

surrogate marker test results and recommending effective combination 

regimens.

Another area in which caregivers can have an invaluable impact is in th

of families as patients move through the last stages of their illness, es

remain at home. Ongoing visits by nursing and other staff, either at ho

setting, can be extremely helpful in addressing concrete concerns and q

the expected changes that occur toward the end of life; and some of the 

spiritual issues that families can expect. It may be helpful to describe 

the estimated prognostic timeframe covering the last months, weeks, a

the responses that families may consider to help their loved ones throu

6 describes the guidance that the clinician can provide caregivers as th

the last stages of illness. As with other aspects of palliative care, a team 

consistent interaction over time are key elements in a successful ther

In addition to the myriad psychosocial issues outlined above, and the 

issues dealt with in more detail in Chapter 10 (Psychiatric Problem

psychosocial themes are (1) multiple loss and (2) grief and bereavem

enon of multiple loss59 in the AIDS epidemic has long been identified fo

communities, this is compounded in the current era because of the lon

have been built up over years of patient-provider interaction. Even tho

of deaths may be declining, the impact of each loss may be as great or g

a cumulative burden of grief that can begin to have deleterious effects 

is important to recognize, anticipate, and respond to these effects, and 

tional health-maintenance’ and self-care are not signs of wasteful se

important aspects of maintaining our perspective and effectiveness as 

Grief both anticipates the loss and follows the loss, with reverberatio

those who have been affected. With the current chronic disease-type 

infection (see Figure 2-2), with many exacerbations and remissions 

Chpt 2 1-17-03.p65 28 1
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Table 2-6: Clinical Issues and Family/Caregiver Support As Patients Approach the End of Life * PROGNOSTIC TIME-FRAME FOR APPROACHING END-OF-LIFE Clinical Issues Months Weeks Days Last 24

Medical Emotional 

• Increased fatigue • Increased sleep • Decreased interest in eating • Increased pain, other symptoms • Increased need for closeness, talking, physical contact • Social withdrawal • Increased sadness, crying • Seeking closure, expressing feelings of love 

• Increased time in bed • Insomnia • Decreased interest in food & drink • Decreased energy • Difficulty walking • May talk about funeral arrangements • Periods of intense emotional expression • “Bargaining” • Life review, discussion of past events • Reassuring family 

• Incontinence • Sleep pattern reversal • Sweats • Confusion • Cognitive failure • Changes in skin (pallor) • Respiratory changes • More peaceful, quiet • Increased communication • Signs of final closure/Saying “Goodbye” • Increased anxiety 

• Somnolence • Restlessnes• Agitation • Gradual or s

consciousne

• Further cha• Periodic bre• Gurgling • Moaning • Delirium • May be unre

minimally re

• Confusion, d

to express e

Chpt 2 1-17-03.p65 29 1
30 U.S. Department of Health and Human Services • Health Resources and Services Administ

Table 2-6: Clinical Issues and Family/Caregiver Support As Patients Approach the End of Life * (continued) PROGNOSTIC TIME-FRAME FOR APPROACHING END-OF-LIFE Clinical Issues Months Weeks Days Last 24

Family/Caregiver Support and Education • Allow patient to dictate food preferences • Offer & encourage food/fluids (never pressure or force) • Offer assistance with walking • Help create a comfortable, safe environment • Work closely with treatment team & report any new or worsening, symptoms or problems • Provide emotional support • Listen • Try not to deny patient’s acceptance of illness by saying “everything will be OK” • Allow patient to cry & vent emotions • Do not minimize sad feelings 

• Support patient’s choices to rest as needed • Continue to report any increase in pain or symptoms to the treatment team • Monitor any changes in sleep patterns, eating etc. • Support discussion of end-of- life wishes • Moderate visiting so patient can rest • Allow for life review discussion, reminiscing • Provide physical contact: back rub, foot massage • Communicate feelings of love, acceptance • Leave bedroom light on if fearful of the dark 

• Keep patient clean & dry • Reposition frequently if unable to move • Offer, don’t force foods/fluids • Be aware of level of consciousness, ability to swallow prior to feeding • Provide physical contact • Moisten lips with ice chips, swabs • Continue verbal communica- tion, play favorite or soothing music • Family may keep bedside vigil • Remember to rest & eat whenever possible (for care providers) • Pray with patient • Provide war

compresses if cold/swea

• Talk to patie

unresponsiv

• Report chan

to treatmenreassured abbreathing chlife) • Notify team uncomfortabgrimacing, f

• Provide med

needed/dire

• Talk with pa

emotions • Provide verbsupport thro

Chpt 2 1-17-03.p65 30 1
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medical and mental health care providers, and are best addressed by th

Bereavement is an important phase of the process of loss and recovery 

unfortunately is rarely addressed by most care providers and by medi

loss of the patient that occurs upon death is also often accompanied b

relationship with the care provider, which again may have developed ov

tion with both patient and family. The care provider’s involvement in fo

the family during bereavement (ranging from writing a condolence let

service to providing counseling or other clinical follow-up to family me

helpful and healing for both the family and the clinician.60 Some or all 

be incorporated into routine follow-up care for families and additiona

the patient has died, whether or not the HIV care provider is also the p

other members of the family (see Figure 2-4b). Many clinical AIDS pr

memorial services for patients who have died, attended by both profes

families/loved ones, which is both a powerful expression of rememb

process of working through grief for the survivors. Chapter 16: Grief and 

ter 20: Care for the Caregiver address these issues in more detail.

CONCLUSION

■ As we enter an era in which the therapeutic possibilities for AID

remains important not to lose sight of the critical issues in end-of-life 

remain central to the comprehensive care of patients and families affe

book attempts to provide useful information regarding these issues in 

can move beyond the artificial distinctions between curative and palli

provide optimal care to all patients throughout the course of the illne

In the current system of medical care, primary care providers are best a

comprehensive care over the continuum of illness in ways that combin

social approaches within an interdisciplinary model of care. The group 

vide integrated care may include clinicians in primary care disciplines 

medicine, family medicine, and pediatrics, or as has been evidenced 

specialists such as infectious disease physicians or oncologists who h

the full range of care required by the patient.

Regardless of the training, what is required is the willingness for u

dichotomies of curative vs. palliative care and recognize that the true 

the physician and care provider are in accompanying the patient th

illness, doing whatever can and should be done at each step along t

involves being familiar and current with the science of palliative m

science of HIV medicine. Part of it also involves acceptance of the phys

defeat death and acknowledgement of our own limitations and vulne

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32 U.S. Department of Health and Human Services • Health Resources and Services Administ

away. The dying know we are not God. All they ask is that we do 

Or, as expressed in the often-cited phrase attributed to Edward Trude

cian in the early 20th century credited with developing the sanitarium 

care long before the advent of disease-specific chemotherapy), the go

patient with an incurable, progressive and terminal illness is: “To cu

times, to comfort always.”

Chpt 2 1-17-03.p65 32 1
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

1. Centers for Disease Control. Mortality attributable to HIV infection/AIDS-United 

40:41, 1991.

2. Centers for Disease Control and Prevention. Update: Trends in AIDS incidence, 

United States, 1996. MMWR 46:165-173, 1997.

3. Palella FJ Jr, Delaney KM, Moorman AC, et al. Declining morbidity and mortalit

advanced human immunodeficiency virus infection. N Engl J Med 338:853-60, 1

4. Centers for Disease Control and Prevention. HIV/AIDS Surveillance Report. 12:

5. Wong T, Chiasson A, Reggy A, Simonds RJ, Heffess K, Loo V. Antiretroviral thera

mortality in New York City. J Urban Health 77:492-500, 2000.

6. Chiasson MA, Berenson L, Li W, et al. Declining HIV/AIDS mortality in New York 

J Acquir Immun Defic Syndr 21:59-64, 1999.

7. Egger M, Hirschel B, Francioli P, et al. Impact of new antiretroviral combination 

patients in Switzerland: prospective multicentre study. BMJ 315:1194-9, 1997.

8. Centers for Disease Control and Prevention. HIV and AIDS–United States, 1981-

9. Selwyn PA, Goulet JL, Molde S, et al. HIV as a chronic disease: long-term care fo

dedicated skilled nursing facility. J Urban Health 77:187-203, 2000.

10. Lee L, Karon J, Selik R, Neal J, Fleming P. Survival after AIDS diagnosis in adole

treatment era, United States, 1984-1997. JAMA 285:1308-15, 2001.

11. Lynn J. Serving patients who may die soon and their families. JAMA 285:925-32, 

12. Sansone RG, Frengley JD. Impact of HAART on causes of death of persons with 

J Urban Health 77:165-75, 2000.

13. Puoti M, Spinetti A, Ghezzi A, et al. Mortality from liver disease in patients with 

J Acquir Immun Defic Syndr 24:211-7, 2001.

14. www.cdc.gov/hiv, viewed 8/29/01.

15. Kravcik S, Hawley-Foss N, Victor G, et al. Causes of death in HIV-infected person

1984-1995. Arch Intern Med 157:2069-73, 1997.

16. Valdez H, Chowdhry TK, Asaad R, et al. Changing spectrum of mortality due to H

during 1995-1999. Clin Infect Dis 32:1493, 2001.

17. Selwyn PA, Arnold R. From fate to tragedy: the changing meanings of life, death

Ann Intern Med 129:899-902, 1998.

18. World Health Organization. Cancer Pain Relief and Palliative Care, Report of a 

Publication 1100804. Geneva: World Health Organization, 1990.

19. LaRue F, Colleau SM. Underestimation and undertreatment of pain in HIV disea

BMJ 314:23-8, 1997.

20. Singer JE, Fahy-Chandon B, Chi S, Syndulko K, Tourtellotte WW. Painful sympto

HIV-infected men in a longitudinal study. Pain 54:15-9, 1993.

21. Breitbart W, Rosenfeld B, Passik SD, et al. The undertreatment of pain in ambul

Pain 65:243-9, 1996.

22. O’Neill W, Sherrard J. Pain in human immunodeficiency virus disease: a review. 

Chpt 2 1-17-03.p65 33 1
34 U.S. Department of Health and Human Services • Health Resources and Services Administ

26. Todd KH, Samaroo N, Hoffman JR. Ethnicity as a risk factor for inadequate eme

JAMA 269:1537-9, 1993.

27. Morrison RS, Wallenstein S, Natale DK, Semzel RS, Huang LL. “We don’t carry th

predominantly nonwhite neighborhoods to stock opioid analgesics. N Engl J Me

28. Jacox A, Carr DB, Payne R, et al. Clinical Practice Guideline: Management of C

Agency for Health Care Policy and Research, U.S. Department of Health and Hu

Service, 1994.

29. Doyle D, Hanks GWC, MacDonald N, eds. Oxford Textbook of Palliative Medicin

University Press, 1998.

30. Fantoni M, Ricci F, Del Borgo C, et al. Multicentre study on the prevalence of sy

treatment in HIV infection. J Palliat Care 13:9-13, 1997.

31. Kelleher P, Cox S, McKeogh M. HIV infection: the spectrum of symptoms and dis

patients attending a London hospice. Palliat Med 152-8, 1997.

32. LaRue F, Brasseur L, Musseault P, et al. Pain and symptoms in HIV disease: a na

Abstract: Third Congress of the European Association for Palliative Care.

J Palliat Care 10:95, 1994.

33. Foley F. AIDS Palliative Care. Abstract: 10th International Congress on the Care 

J Palliat Care 10:132, 1994.

34. Moss V. Palliative care in advanced HIV disease: Presentation, problems, and pa

AIDS 4(S):S235-42, 1990.

35. Fontaine A, LaRue F, Lassauniere JM. Physicians; recognition of the symptoms e

how reliable? J Pain Symptom Manage 18:263-70, 1999.

36. Breitbart W, McDonald MV, Rosenfeld B, Monkman ND, Passik S. Fatigue in amb

J Pain Symptom Manage 15:159-67, 1998.

37. Wood CG, Whittet S, Bradbeer CS. ABC of palliative care: HIV infection and AID

38. Filbet M, Marceron V. A retrospective study of symptoms in 193 terminal inpatie

Third Congress of the European Association for Palliative Care. J Palliat Care 1

39. Mathews W, McCutcheon JA, Asch S, et al. National estimates of HIV-related sym

HIV Cost and Services Utilization Study. Med Care 38:762, 2000.

40. Vogl D, Rosenfeld B, Breitbart W, et al. Symptom prevalence, characteristics, an

outpatients. J Pain Symptom Manage 18:253-62, 1998.

41. Ledergerber B, Egger M, Erard V, et.al. AIDS-related opportunistic illnesses occ

potent antiretroviral therapy: the Swiss cohort study. JAMA 282:2220-6, 1999.

42. den Brinker M, Wit FW, Wertheim-van Dillen P, et al. Hepatitis B and C virus co-

hepatotoxicity of highly active antiretroviral therapy in HIV-1 infection. AIDS 14

43. Sulkowski M, Thomas D, Chaisson R, Moore R. Hepatotoxicity associated with an

adults infected with human immunodeficiency virus and the role of hepatitis C o

JAMA 283:74-80, 2000.

44. Goulet JL, Gaughan D, Molde S, Selwyn PA. The impact of serious psychiatric di

of people with AIDS. J Urban Health 77:213-21, 2000.

45. End of Life Physician Education Resource Center (EPERC). www.eperc.mcw.ed

Chpt 2 1-17-03.p65 34 1
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

N Engl J Med 344:984-96, 2001.

49. Wall PD. Twenty-five volumes of Pain. Pain 25:1-4, 1986.

50. Fox E. Predominance of the curative model of medical care. JAMA 278:761-3, 19

51. Wenger NS, Kanouse DE, Collins RL, et al. End-of-life discussions and preferenc

JAMA 285:2880-7, 2001.

52. Mouton C, Teno JM, Mor V, Piette J. Communications of preferences for care am

ciency virus-infected patients. Barriers to informed decisions? Arch Fam Med 6

53. Curtis JR, Patrick DL. Barriers to communication about end-of-life care in AIDS 

1997; 12:736-41.

54. National Hospice Organization. Guidelines for Determining Prognosis for Selec

Alexandria, VA: National Hospital Organization, 1996.

55. Deeks S, Wrin T, Liegler T, et al. Virologic and immunologic consequences of dis

antitretroviral-drug therapy in HIV-infected patients with detectable viremia. N 

56. Frenkel L, Mullins J. Should patients with drug-resistant HIV-1 continue to rece

N Engl J Med 344:520-2, 2001.

57. Rabkin JG, Ferrando S. A ‘second life’ agenda. Arch Gen Psych 54:1049-53, 1997

58. Selwyn P. Surviving the Fall: The Personal Journey of an AIDS Doctor. New Ha

1998.

59. Nord D. Issues and implications in the counseling of survivors of multiple AIDS-

20:389-413, 1996.

60. Bedell SE, Cadenhead K, Graboys TB. The doctor’s letter of condolence. N Engl 

61. Cassidy S. Sharing the Darkness. Maryknoll, New York: Orbis Books, 1991.

Chpt 2 1-17-03.p65 35 1
Chpt 2 1-17-03.p65 36 1
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

Jane M Ingham, MD, BS, FRACP, and Maria Farooqi

INTRODUCTION

■ Health professionals caring for people living with HIV will encounte

ing from minor and bothersome problems to problems that are associat

caring for a patient who presents with a symptom, the health professi

The first involves defining the etiology of the symptom and implement

ment strategy directed towards eliminating or modulating the path

sponsible for triggering the symptom. The second role involves ensurin

oped and implemented that provides timely and effective relief of the 

the symptom. Usually, these two goals involve two closely interrelated

strategies and there may be times, especially towards the end of lif

unattainable. At the core of the process required to achieve these goals 

the focus of this chapter.

To understand symptom assessment in HIV infection, health care pro

symptoms within the contexts of quality of life and of HIV infection 

dresses the symptoms common in patients with advanced HIV disease

tom assessment, and an approach to symptom assessment in advanced 

cally useful assessment instruments. Although this chapter frequentl

the symptoms associated with fever as examples to illustrate the pr

same general process of assessment applies for all symptoms.

Symptoms and Quality of Life in HIV

The overarching goal of palliative care is to relieve or reduce sufferin

life. A crucial component of quality of life is the component that relate

fatigue and pain, among many others. Such symptoms can be present 

illness from diagnosis through the progression of disease and toward 

these symptoms may be present even at times when disease markers a

times unpredictable and episodic course of HIV-related illness—espec

this illness when treatment strategies were less clearly outlined—ma

the likely course of HIV-related disease for an individual. This factor, 

cacy and developments in the field of palliative medicine, prompted an 

the importance of palliative medicine for those living with HIV infect

tors have served to promote quality of life itself as an important outco

disease, regardless of the stage of illness.

Health-related quality of life is a multidimensional concept affected by 

negative experiences from a variety of domains. A patient’s health-rela

not be thought of only as a research outcome; rather, in clinical practic

concept that reflects the global impact of disease and the impact of relat

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38 U.S. Department of Health and Human Services • Health Resources and Services Administ

cal, psychological and social domains of quality of life must always b

clinical assessment process. This especially includes the psychological 

experiences that may occur in individual cases.

COMMON SYMPTOMS IN ADVANCED HIV INFECTION

■ To set the stage for the process of symptom assessment, it is most h

sionals to have an understanding of the common symptoms experien

vanced HIV infection and an understanding of quality of life in HIV-rela

of the chapter will summarize some of the studies that have increased 

common symptoms that occur with HIV infection. Clearly, myriad sym

setting of HIV-related disease. In the palliative care setting, in patien

fection, a wide range of symptoms occurs, with fatigue, anorexia/weigh

depression being the most commonly reported. Although the presen

related to the HIV infection directly, commonly a symptom will reflect 

process that is related to the HIV infection.

Most of the surveys that have sought to characterize symptoms assoc

and AIDS have focused on specific symptoms.1-3 However, two broad sy

tients with AIDS highlight the spectrum of symptoms experienced by th

et al. investigated the prevalence and intensity of symptoms and th

symptom control among 1128 HIV-infected patients reporting to the ou

of 15 clinical centers in central Italy, recording clinical and epidemiol

secutive days.4

 The most prevalent of 10 symptoms were asthenia (65%

(32%), pain (29%), and fever (29%). Opioid analgesics were used in 3% o

opioid analgesics in 13%. Pain was present in less than one third of 

nonetheless suggested that pain was undertreated.

Another survey, undertaken by Vogl, et al., explored the symptoms of 

with AIDS to assess symptom prevalence, characteristics, and distress

symptoms assessed using a validated symptom assessment instrument 

Assessment Short-Form),6, 7 the mean number of symptoms reported wa

of the 32 symptoms had prevalence figures of greater that 60% and 

(86%), fatigue (85%), sadness (82%), pain (76%), feeling irritable (

(73.8%), feeling nervous (68%), dry mouth (67%), difficulty concentrat

breath (62.4%), feeling drowsy (61.9%), and cough (60.3%). More sym

those patients with lower performance scores and in those for whom 

drug use was reported as the mode of HIV transmission.

Neither of these studies clearly delineates the strategies used to treat t

with HIV infection, as is the case in patients with cancer, pain and o

undertreated and therefore prevalence figures should not be read as r

palliation for the symptoms associated with this condition. For example

latory AIDS patients were assessed regarding the type and frequency 

Chpt 3 1-17-03.p65 38 1
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

in persons with advanced HIV-related disease. In addition, there is evi

higher the number of symptoms, the greater the experience of distres

symptoms to be present concurrently. Finally, the distress from sympt

tion is often undertreated. It is within this context that symptom ass

taken and each of these factors must be taken into consideration wit

ment process.

Symptoms and Quality of Life in Advanced HIV Infection

Several studies have specifically considered quality of life in people 

impact of symptoms on quality of life was explored in the large prospe

vey done by Vogl, et al. discussed above.5 In this survey, symptoms were 

ized using a validated symptom scale and it was demonstrated in this 

number of symptoms and the symptom distress were highly associate

tress and poorer quality of life. Older age, female sex, nonwhite race, 

the presence of intravenous drug use, each have been associated with gr

quality of life. In many studies the presence of symptoms is the str

quality of life.5, 10, 12, 15 The results of these studies highlight the impact 

cal and psychological symptoms on quality of life.

THE PRINCIPLES OF SYMPTOM ASSESSMENT

■ As discussed above, symptom assessment is a most important aspe

significant component of quality of life assessment.16,17 When care is b

with HIV-related illness, nearly all clinician interactions with patients 

ment skills. The following section outlines key points to consider when 

Definition of the Word Symptom

Symptoms are Subjective Experiences

A symptom has been defined as “a physical or mental phenomena [sic]

of condition arising from and accompanying a disorder and constituti

cifically a subjective indicator perceptible to the patient and as oppose

sign).”18 In other words, symptoms are experienced by the patient and s

clinician. This is a vital concept; symptoms cannot be seen, although 

manifestations of a symptom can be detected. Oftentimes a clinician 

tress associated with a symptom.

Symptoms are Different from Pathological Processes or D

Just as signs are not symptoms, symptoms and signs are not, of them

toms and signs can however assist in the diagnostic process. For examp

sensation–-a symptom–-that may occur with the diagnosis of anemia 

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40 U.S. Department of Health and Human Services • Health Resources and Services Administ

Table 3-1: Differential Diagnosis and Management

of Fatigue in HIV-Related Illness

Interventions t

Causes role as treatme

• Anemia

• Adrenal insufficiency

• Infections

• Malignancy

• Metabolic abnormalities

• Disease progression

• End-stage organ disease

• Malnutrition

• Insomnia

• Depression

• Neuromuscular and

other neurologic disorders

• Autoimmune disorders

• Medications (including chemotherapy,

sedatives, steroids and many others)

• Ongoing distress from uncontrolled

symptoms (including pain and dyspnea,

among others)

• Intense physical activity

• Physical treatments, including radiation

therapy

• Unknown/other

Treatment of u

Physical thera

Emotion

(counselin

suppor

Pharmacolog

including 

or corti

(can also 

fatigue in s

Chpt 3 1-17-03.p65 40 1
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

Table 3-2: Differential Diagnosis and Management of Fever 

Interventions t

Causes role as treatme

• Infections

• Malignancies

• Autoimmune disorders

• Granulomatous disorders

• Drug-related fevers

• Thrombosis

• Transfusion-related

• Factitious

• Unknown/other

Treatment of u

Antipyretics includ

salycilate

Physical treatm

cooling, sp

It is important to be aware that the clinical signs cannot give an indicat

a patient is distressed or bothered by a symptom – that must be defi

report. Pain is another subjective sensation (symptom) that may, or ma

signs. Although sometimes distress can be seen – as, for example, an 

crying, writhing, tachycardia, or other physical manifestations – none 

give the clinician a full indicator of the degree to which a patient is dist

pain. That must be defined by the patient’s self-report.

In the case of chronic pain, it is not uncommon for a patient to demon

physical manifestations of distress even when he or she reports that 

tient may have no visible signs of distress but may report that the pain i

to 10). Even in the absence of signs of distress, the pain must be asse

pain considered, and the associated distress concurrently treated. (Se

By keeping these distinctions in mind, health professionals can more e

two broad goals of symptom assessment: the goal that is related to the 

ology, and the goal that is related to the treatment of distress.

Chpt 3 1-17-03.p65 41 1
42 U.S. Department of Health and Human Services • Health Resources and Services Administ

setting, clear language is not always used when communicating the deta

The problems with this failure of language in the field of symptom asse

words that people use to describe symptoms may mean different thin

Two, the words used to describe a symptom may have various medical 

Words May Have Many Meanings

Some of the words used to describe each symptom have a plethora of m

problem of itself can only be approached by careful historytaking and 

cian to elucidate the nuances of the language the patient uses to co

tients should not be described as poor historians. Clinicians must end

ans, or good historytakers.

The words patients use to describe their symptoms can often have m

which highlights the crucial need for detailed and thorough historytak

• Fatigue may mean to some sleepiness, to others exhaustion

weakness, and to still others the word may have other implic

• Shivering implies to most a tremulous shaking that occurs w

sepsis. However, patients have also used this word when atte

describe the dysesthetic sensation that may occur with neur

• Confusion may be used to imply disorganized thinking, forge

hallucinations, concentration deficits and numerous other c

status.

Words Have Various Medical Implications

Within the medical arena, the words used to describe a given symptom 

implications. Definitions and taxonomies for many symptoms are lack

inexact in describing the experiences of patients to other clinicians. T

implications that relate to continuity of care and team communicatio

search implications related to the processes of developing, undertakin

tom-related research studies.

Key words that clinicians may encounter in assessing symptoms of pa

fatigue, breathlessness, and confusion. Consistency is lacking in the 

many other words that are used to describe symptoms. Clinicians need 

semantic problem and to develop consistent tools for medical commun

the meanings of words also highlights the need for clinicians to use v

symptom assessment and research. In summary, these observations po

professionals to explore the meaning of the symptom in detail during 

assessment.

Chpt 3 1-17-03.p65 42 1
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

development of this taxonomy has also allowed clinicians to undertake 

pain. For example, the results of studies of lancinating neuropathic 

petic neuralgia can be compared and applied in the clinical setting 

which investigators and clinicians are communicating is clearly define

Breathlessness

Breathlessness is a word that is generally used to refer to subjective rep

ing. However, it also has been used in the clinical and research settin

use of the accessory muscles of respiration (which may not always be a

Some palliative care studies have reported dyspnea as a prevalent symp

of life, but have not defined clearly whether the reports are referring 

ness experienced by the patient, or observed heavy breathing witness

Breathlessness lacks widely accepted scientific definitions and taxon

ies of dyspnea can sometimes be difficult to compare. It can thus be d

ings of such studies.

Fatigue

Fatigue, as noted earlier, is a word that is used to identify a variety 

include generalized weakness, sleepiness, and others. Unless clinician

sation to which they are referring in clinical discussions, this can be co

health care team.

Confusion

Confusion is a word that is commonly used as a diagnosis by clinicians

be a symptom when described by patients, and when used by clinic

mately be described as a sign, usually of an underlying diagnosis/di

dementia or other condition. Even in the latter context, confusion is 

useful when qualified with more detailed descriptors such as concen

deficits, etc., as would be elucidated by an assessment of the confusio

mental state examination.

Importance of Subjective Assessment

Symptoms are by definition subjective, and where possible, patien

primary source of information. Some observations to consider in relat

• Observer and patient assessments are not highly correlated, 

of a clinician’s assessment cannot be assumed unless it invo

from the patient.20-24

It has been demonstrated that clinician accuracy can be 

when assessing patients with severe pain.20

Chpt 3 1-17-03.p65 43 1
44 U.S. Department of Health and Human Services • Health Resources and Services Administ

when reporting on objective measures, such as the patients 

dress independently. Of note, this is not to imply that caregi

should be neglected as they can provide vital insights into th

experience, especially over time.

• Objective signs can be usefully monitored to complement su

this information cannot substitute for self-report.

For example, nausea assessment should involve a subject

patient and may be supplemented by assessment of the freq

• In some groups of patients, such as cognitively impaired adu

children, it may be impossible to obtain or interpret patient 

These populations need special care and attention. When 

encountered, reports from family members and staff may be 

proxies and the information obtained from these sources sh

with a physical assessment of the patient so that the clinicia

the situation. Although proxy data should be interpreted wit

observations of a caregiver who knows the patient well or is 

nurse should certainly be considered as important insights i

of, patient distress.

Symptoms Are Multidimensional Experiences

Symptoms are multidimensional experiences that may be evaluated 

characteristics and impact.6, 25-28 Symptom multidimensionality is portr

not uncommon for researchers or clinicians to describe a symptom si

present. Although prevalence data alone may be useful information, a m

of the characteristics of specific symptoms is usually more helpful, 

setting.

Significant variability has been demonstrated in relation to symptom ch

crucial variable dimensions are frequency, severity and distress. Altho

istics are often variable, the proportion of patients who describe a symp

or frequent usually exceeds the proportion describing it as highly distr

dimension does not apply to some symptoms, for example, constipatio

Chpt 3 1-17-03.p65 44 1
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

in studies of patients with advanced HIV infection and has provided u

Symptom distress relates to the degree of subjective discomfort and 

each specific symptom. Global symptom distress has also been consid

cept that relates to the impact of all symptoms. Symptom distress ca

sured. As alluded to above, the overall impact of symptom distress is 

prospective cross-sectional survey, discussed above, of 504 ambulatory 

patients experienced many distressing physical and psychological sym

distress.5

 Symptom distress significantly correlated with lower perform

on measures of psychological distress, and a poorer global quality of li

The impact of symptoms may be described and measured in relation to 

constructs. Many of the specific issues form the components of the glo

life. The impact of a symptom can be assessed in relation to the follow

• Spheres of functioning

• Family, social, financial, spiritual and existential issues

• Various global constructs such as overall symptom distress o

Factors that may modulate symptom distress may in turn be modulate

the overall quality of life. Distress can be compounded when it is comin

By the same token, positive aspects of life frequently can mitigate som

multidimensional construct of quality of life reflects the broad influe

negative factors on a patient’s perceived well-being.30, 31 A diverse arra

social, ethical and spiritual phenomena can increase or temper distres

Factors from each of these areas have the potential to independently 

and to exacerbate or lessen the distress associated with specific sympto

be considered in symptom assessment.

PRACTICAL ASPECTS OF SYMPTOM ASSESSMENT

■ This section focuses on the practical aspects of symptom assessmen

tions in which symptom assessment can be especially challenging, and 

ments for symptom assessment.

The key to symptom assessment is a comprehensive approach as shown 

care provider should undertake the following tasks:

• Develop an understanding of the patient’s current and past 

• Elicit the details of the distress caused by each symptom

Chpt 3 1-17-03.p65 45 1
46 U.S. Department of Health and Human Services • Health Resources and Services Administ

Chronology

Therapeutic interventions

Patient’s knowledge of current

extent of disease

Past history of other medical,

surgical, psychiatric problems

Review of systems

For each symptom:

• Assessment

Including 

HIV-relat

Including 

Including 

psychiatr

Chronolo

Aggravati

Degree of 

Impact on 

Other clin

Impact of 

other sym

Patient p

Prior trea

their effic

Other fac

distress a

symptoms

and supp

• Psychosocial issues Family history

Social resources

Impact of disease and symptoms

on patient and family

Substance abuse history and

aberrant drug-related behaviors

Goals of care

Chpt 3 1-17-03.p65 46 1
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

quality of life

Psycholo

Social in

Factors that modulate global

symptom distress, e.g., coping

strategies and family supports

Current and prior use of

prescription medications

Current and prior use of

antiretrovial therapies

Current and prior use of

nonprescription drugs including

alternative or complementary

medical therapies

Inferred pathophysiology

Relationship to other symptoms

Differing 

Same pat

Causal pa

another s

Causal fa

directed 

Sources: Adapted from Ingham JM, Portenoy RK. Symptom Assessment. In Cherny NI, Foley KM, ed

North America. Philadelphia: W.B. Saunders; 1996. p. 21-40. Also, Ingham JM, Portenoy RK. Th

symptoms. In Doyle D, Hanks GWC, MacDonald N, eds. Oxford Texbook of Palliative Medicine. 2nd 

1998. p. 203-21.

• Current medications

• Drug allergies and

previous adverse

drug reactions

Physical examination

Assessment of

available laboratory

and imaging data

Conclusions of

diagnostic process

• Pathophysiology

(for each symptom)

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48 U.S. Department of Health and Human Services • Health Resources and Services Administ

ppg p

• Evaluation of the patient’s medical history

• Physical examination

• Investigations and further evaluation

These steps should allow for the development of a problem list and a tr

should always include a method for ongoing evaluation of the impact o

clearly defined plan for ongoing symptom assessment. A discussion o

specific treatment plans that exist for each symptom is beyond the s

these issues are addressed in symptom-specific chapters. (See, e.g., Ch

Pulmonary Symptoms, and Chapter 8: Oral Problems.)

Evaluation of Medical History

The initial step in the assessment of the symptomatic patient involv

a complete medical history. This process lies at the core of clinical dia

toms must always be considered in context of the overall medical cond

The order and timing that are chosen by the clinician for eliciting a 

will be influenced by a number of factors, including the following:

• The degree of acute patient distress that is present

• Convenience and efficiency

• The previous relationship of the patient and clinician

Clearly if a patient is in a great deal of distress an expedited history m

clinician concurrently treats the patient’s acute distress (for example 

severe acute pain). Although distress that is so severe as to be in n

minutes requires an expedited approach, this does not obviate the nee

history from the patient or another source at a slightly later time.

If the clinician is familiar with the patient, the clinician may already 

history and the historytaking can be expedited. A clinician seeing a pa

an emergency setting will likely need to either spend more time wi

available records to ascertain key components of the history.

Approaches to Historytaking

With complicated HIV-related illness and in cases where multiple sym

helpful to deviate slightly from the traditional approach to historytakin

the symptom history, separate from the history of HIV infection and 

illnesses. This approach can focus the history and help the clinician de

medical problems and the detail of the distress. This approach also ser

components of a palliative symptom assessment and, although it does 

traditional approach to historytaking, it does include all of the com

history.

Chpt 3 1-17-03.p65 48 1
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

• Family history

• Social history

• Medication history

Another approach ensures emphasis on all aspects of the detail needed 

advanced illness and multiple symptoms (but still involves all of the 

traditional approach). This approach includes the following topics (un

not always covered in a traditional history):

• History of the underlying illness (HIV infection) including th

chronology of known related illnesses (other HIV-related dia

medical events

• Symptom assessment, which allows for a specific focus on ne

symptoms

• Systems review

• Past history of other medical, surgical or psychiatric problem

• Medication history

• Family history

• Social history

• A review of current goals of care

History of the Underlying Illness

A history of the underlying illness (HIV infection) and its consequen

provide insight into the patient’s experience, the likely diagnoses that 

each symptom, and the therapeutic options that could be considered 

Therefore, in the assessment of patients with HIV infection the compon

include:

• Stage of the HIV infection

• Presence and chronology of HIV infection and known HIV-re

illnesses and/or medical events (mode of transmission of HI

ascertained if possible)

• History of therapies directed towards HIV infection

• History of therapies directed towards significant HIV-related 

and/or medical events

Chpt 3 1-17-03.p65 49 1
50 U.S. Department of Health and Human Services • Health Resources and Services Administ

and to explore its dimensions and impact separately. When a patien

symptoms it can also be helpful to ascertain his or her biggest issues: t

to-day problems.

• Chronology of the Symptom(s)

Establish the chronology of each symptom. (e.g., When did i

any triggering factors? Was it initially severe, did it escalate 

become severe suddenly? Does it vary over time?)

• Exacerbating and Relieving Factors

Establish factors associated with the symptom. (e.g., Do act

heat, cold, or other factors affect the symptom?)

• Symptom Characteristics

Ask the patient to describe symptom characteristics, includ

and some other symptoms); frequency; severity; and associa

bothersome the symptom may be for the patient.6 It is impor

where possible, reports of symptoms, especially of associate

on the subjective experience of the patient. Occasionally a p

degree of cognitive impairment and may not be able to provi

these instances rely upon clinical signs of observed distress, 

the section Challenging Clinical Situations and Special Popu

• Quantification of the Symptom(s)

If possible, ask the patient to quantify the symptom in some 

“anchor” for ongoing evaluation. Pain and fatigue, for examp

on a severity scale of 0 to 10, and similar scales can be used 

Words can also be helpful, such as “mild,” “moderate,” or “se

2, the Memorial Pain Assessment Card, at the end of this ch

Symptom Measurement in Clinical Practice.

• Impact on Functional Capabilities

Elicit the impact of each symptom on functional capabilities

the fatigue limit you in daily activities?) Question 23 in the B

Figure 3-3, provides a useful template for such questions.33

• Impact on Other Symptoms

Explore the degree to which each symptom, or its treatment

exacerbates other physical or psychological symptoms (e.g., 

become more severe on the days that you also have high feve

medicines seem to cause sleepiness or confusion? Do you fi

pain gets you down?)

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medications or treatments a patient has tried and how well 

symptom. (For example, with the symptom of pain, did pain 

provide you with any relief, and if yes, how much relief? For 

pain scale can help the patient to report on a scale of 0 to 10 

level before the medication and pain level after the medicat

It is also important to ascertain why therapies may have bee

Were they ineffective, too expensive, unavailable, associated 

or were there other reasons?

• Impact of the Symptom(s) on the Patient’s Quality of Life

A symptom can produce many adverse effects on quality of l

The direct and indirect consequences of symptoms can exac

psychosocial, spiritual, and financial burdens produced by th

Pain, for example, can restrict physical functioning or worse

anxiety and interfere with a patient’s ability to interact soci

must extend beyond symptom control to the impact of symp

quality of the patient’s life.

The Brief Pain Inventory (BPI) is a measurement tool that u

questions to explore the impact of a symptom (see Figure 3-

4-5 in Chapter 4 for the BPI Short Form. Question 23 on the 

good example of the kind of questions that providers should 

exploring the impact of almost any symptom. Also, questioni

side effects and costs of therapy. The latter must be include

that a feasible treatment plan can be developed.

Systems Review

A systems review is an important aspect of assessment. Especially whe

ing multiple symptoms, it is not uncommon for him or her to overlook 

problem. For this reason, and because unexpected minor symptoms m

agnostic clues, it is prudent for clinicians to conduct a through system

History

The patient’s history of other medical, surgical or psychiatric problem

These problems can, of themselves, contribute to distress, impact po

gies, and cause symptoms. This aspect of the historytaking should in

evant past medical, surgical and psychiatric problems.

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• Current and prior use of non-prescription drugs including “a

“complementary” medical therapies

• Drug allergies, and previous adverse drug reactions

• Prior treatment modalities for each symptom (determined e

discussing each symptom)

Family History

A family history is an important aspect of assessment, especially in 

disease. Clinicians may question the relevance of the causes of death o

the situation of a patient with established advanced disease. Family 

relevant because it is a crucial part of the life experience of an ind

relevant in the setting of AIDS, since multiple family members may be H

may have already lost other family members to the same disease. The ex

bers’ illnesses or deaths colors the life view and the fears of patients 

facing progressive disease and fearing the worst. Including questions a

help to elicit and—ultimately, if possible—allay fears.

Questions can include ones along the lines of “Did you provide the dir

father/sister/brother/child/friend during that illness?” and/or “Were th

tive/friend experienced that have led you to worry about what you mig

illness were to progress?” Although this is a slight departure from the 

and does lead into the social history, it is an approach that begins 

symptoms such as anxiety, which in turn may be aggravating the distr

tom. For example, if a patient witnessed uncontrolled pain in a rela

assumption that this is the norm may influence his or her response to 

inclusion of “friend” in the above questioning, with HIV-related illnes

include the experience of others beyond family members in this line 

this point or in the social history. A question to ask might be, “Have 

others with the same or a similar illness to the illness that you have?”

Social History

The social history provides an opportunity to elicit detail of the psyc

can contribute to the clinician’s understanding of the individual’s dist

may assist in the modulation of that distress. Traditionally, in this pa

clinician asks the patient about the following:

• Occupation

• Marital status

• Children

• History of smoking, alcohol use, and illicit drug use

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Challenging Clinical Situations and Special Populations.)

In patients with advanced disease, for many reasons, the social asses

broad. In addition to eliciting the core of the social history, initial hist

the following:

• Psychosocial assessment should reflect an understanding of 

that modulate distress, such as personality, coping, and both 

psychiatric disorders. Questions that address the concept of 

resources can be helpful (e.g., Are there things or people in 

you strength and help you to cope as you face this illness?). 

can also be symptom-specific (e.g., Are there things/people 

have been helping you to cope with fatigue?).

• Cultural and spiritual assessment should reflect an understa

respect for, family cultural and spiritual dynamics and the p

expectations and preferences for medical care and interacti

assessment is crucial, especially in relation to sensitive issu

treatment decisions towards the end of life. Practical issues 

aspect of the assessment can inform the development of tre

example, the clinician may come to understand the cultural 

interpretation that a patient or family has in relation to inte

parenteral feeding or ventilator support near the end of life. 

many patients, cultural and spiritual practices and support c

alleviate distress.

• The clinician should become aware of the patient’s family an

resources, financial situation, and physical living environme

the history also provides an important opportunity to ascert

assist with the patient’s care in the home. Often, with advan

members are asked to function as health care providers in th

member who serves as the “front-line” caregiver plays a key 

management, administration of medications, and reporting 

therefore, he or she can be a crucial help in ongoing sympto

management.

• Knowledge of the patient’s and family’s previous experience 

or other progressive medical disease may provide useful insi

response to physical illness or the genesis of psychological s

The social history provides the clinician with information that can ass

of the patient with advanced illness. It can also identify aspects of the pa

and distress that may be best addressed by others on the health care te

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patient’s priorities and goals are respected. Clinicians should include 

the routine historytaking in a manner that reflects patient and family 

communication.

The patient’s understanding of his or her current disease status usually 

Although the exact approach to the patient may vary in certain cultur

large part in this discussion, goals should be explored as they relat

sustaining treatments and comfort therapies. Once these goals have 

developed on which a clinician and the patient—and, where appropria

discuss treatment options and the realities of what can and cannot be a

any newly defined problems. Especially in the later stages of illness, w

may be present, this very important aspect of the symptom ass

decisionmaking significantly.

This is often a time in the historytaking when a question may also be ap

the patient or family has thought about or begun any advanced care 

area is addressed in detail in Chapter 21: Patient-Clinician Communic

questioning will be influenced by the relationship of the patient and c

context in which the discussion occurs (e.g., “Perhaps we could talk o

about your illness and how it has been going?”). It may be appropriate i

ask about the patient’s hopes and goals for particular treatments and 

proaches could include, “What concerns you most about your illness?” a

(your expectations, your fears) for the future?”34

The approach to such questioning will obviously be different in some 

approaches are called for in situations in which a clinician has been t

ing for a patient over weeks, months or years as opposed to situations in 

to the clinician. Nonetheless, the clinician needs an understanding 

stands about his or her stage of illness in order to begin dialogue a

treatment plan. (Note: Patients’ understanding of their stage of illness 

ing their distress; for example, patients may assume that because pai

derlying disease has significantly progressed).

Physical Examination, Investigations and Further Evaluat

Having elicited the medical history, the clinician should proceed wit

and further assessment if needed to address symptoms. This aspect of 

for establishing the etiology of (the pathophysiologic process responsib

addition to a thorough physical examination, symptom assessment m

available laboratory and imaging data, and if needed, further specializ

• An examination should, at a minimum, include all body syste

particular symptoms. With advanced HIV disease, given that 

symptoms may be present and that unexpected clinical find

uncommon, a full clinical examination is usually appropriate

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other assessments may be appropriate to provide diagnostic 

• Specific assessment may also be appropriate to identify oth

distress and/or patient needs for psychosocial support or reh

Problem List and Treatment Plan

At the conclusion of the history and examination, the clinician shou

lem list and establish a treatment plan that includes symptom assess

over time.

• Definition of symptom etiology

First the etiology of the symptom(s) should be defined, usin

syndromes, other symptoms and common symptom complex

should recognize that a symptom may be isolated and cause

process or, alternatively, with multiple symptoms the situati

complicated. Symptoms may be concurrent but unrelated in 

and related to the same pathological process; concurrent wi

directly or indirectly a consequence of a pathological proces

symptom (e.g. vomiting may induce hypokalemia that result

nausea, bloating and constipation); or concurrent with one s

consequence or side effect of therapy directed towards treat

• Problem list

The clinician should create a problem list that reflects the c

including, importantly, the patient’s priorities. The treatmen

defined by the patient as particularly bothersome should be 

• Treatment plan

If possible, the clinician should make a treatment plan for th

symptom(s). Some treatments can palliate a symptom by tac

cause of the symptom. For example, in the case of sweats an

a fever, which in turn is caused by infection, a plan could be 

treatment of the infection with appropriate antibiotics; in th

and fatigue caused by anemia and exacerbated by depressio

to treat the anemia and the depression.

Sometimes, with advanced disease, a patient may elect not t

directed toward the cause of the problem. Such treatments 

viewed as burdensome and possibly futile given the stage of 

larly if the patient’s goals direct the clinician to focus solely 

such cases, it is important for the clinician to guide the pati

palliative outcomes likely with and without the treatment th

etiology. For example, although a patient may have elected t

treatments there may be instances when antibiotics may be 

means of palliating a symptom.

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or a non-steroidal anti-inflammatory medication and physica

cooling (including fanning, bathing, etc). Similarly, in a case 

fatigue caused by anemia and exacerbated by depression it m

to consider a plan for counseling, support, assistance with d

other interventions to minimize the impact of fatigue (see T

• Monitoring plan A plan for monitoring the impact of sympto

over time is a crucial aspect of symptom assessment. Reasse

timely and practical. If a symptom is very severe or distressi

may need to be undertaken within the hour; if a symptom is 

different schedule should be set up. A monitoring plan shou

for the patient’s abilities. For example, if a patient cannot a

for a follow-up visit, a telephone call or home visit by a clinic

method for monitoring. At times it can be most helpful to us

instrument to facilitate effective monitoring and improve te

in the health care setting; see following section, Symptom A

Methodology and Instruments.

CHALLENGING CLINICAL SITUATIONS AND SPECIAL 

Cognitive Impairment in Advanced Disease

Cognitive impairment may occur in advanced disease and in the im

situations, detailed symptom assessment may be difficult. Nonethele

care at the bedside a provider can generally ascertain whether a pati

then consider interventions that may be helpful in alleviating distres

including, for example, facial or physical movement, can be crucial in 

A recent small study of 14 patients with cancer pain and severe cog

during episodes of agitated cognitive failure, pain intensity as assesse

cantly higher than the patient’s assessment had been before and after 

plete recovery, none of the patients studied recalled having had any d

sode. These data are difficult to interpret, but do highlight some imp

assessment. The authors of the study suggest that patients who recover 

delirium may have no memory of the experience, including the pain, an

ing staff are likely to overestimate the discomfort of patients with this 

may be true, another interpretation might be that patients with deliri

tive to many irritations including pain, noise and other factors, and 

compounded distress in the presence of both delirium and one of thes

that if symptoms are to be controlled, clinicians must assess patients t

problem. When more than one problem is present (in this instance d

problem may warrant treatment in order to minimize distress; in this 

ments may be needed for both pain and delirium.

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than younger children.

Careful attention to verbal cues and parental input is crucial in the pedia

measures for many symptoms in this population are lacking, but a varie

developed for the assessment of pain including visual analogue scale

observational scales such as the Observational Scale of Behavioral Dist

Behavior Checklist.39

The Memorial Symptom Assessment Scale (MSAS) has been adapted fo

to 18 years of age (see Figure 3-1). The MSAS can provide multidimen

symptoms experienced by children. Its pediatric use to date, however

tion with cancer and in the research setting rather than in clinical ca

Additional tools specifically for measuring pain in pediatric patients ar

this chapter in Figures 3-4 (a-d).

Cultural and Language Barriers

Symptom assessment and measurement can also present challenges 

culture and language from the professionals providing their care. In case

exist, meticulous attention should, where possible, be given to skilled tran

symptoms, only a few instruments have been shown to be reliable and 

languages.45, 46 Translation and appropriate symptom measures must b

In the clinical setting, health care professionals can use simple, face-va

overcome language barriers. At the initial assessment the clinician 

patient and an interpreter to develop a simple, two-language verbal ra

which can be kept by the patient’s bedside. To monitor the level of dist

ventions, such scales should address both symptom intensity and relief

to ensure that symptom distress is minimized even when interpreters a

tion, historytaking should explore cultural barriers to symptom assess

Substance Abuse History or Problems

Clinicians frequently report that symptom assessment is especial

patient has a previous or current problem with substance abuse or add

culty with symptom assessment also is common in situations in which t

that a substance abuse problem may be present. In these situations, t

agement of pain presents many difficult clinical issues.47 However, as 

al., “virtually any drug that acts on the central nervous system and any 

tion, can be abused.” 48, 49 The implication is that assessment of subst

when assessing a wide variety of symptoms including pain, anxiety, d

many others. In cases where substance abuse is defined as a problem

caring for such patients can be invaluable as the issues involved in ca

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58 U.S. Department of Health and Human Services • Health Resources and Services Administ

, p

substance use problems be committed to providing optimal medical 

volve symptom management. An ongoing relationship between the c

can foster both trust and continuity of care is optimal in all cases of ad

desirable in this setting.

A detailed history, as described in this chapter, should be undertak

pected to have, a history of substance use problems. As in all cases o

tress, it is crucial for clinicians to focus on the detail of symptoms and o

with them, in order to define the underlying pathology and diagnosis 

plan. Careful assessment, combined with knowledge on the part of t

dromes, other symptoms, and common symptom complexes should fa

of a diagnosis and treatment plan. Careful attention should be given s

for concurrent psychiatric conditions, many of which have an increas

who have problems with substance use. Initially, it is important for th

the patient’s current status with regard to drug use and the situations 

past, may have prompted the patient to turn to substance abuse. Clear

forthcoming with information relating to their substance use activit

that are uncovered during historytaking or from other clinicians or fa

and their implications considered.

In cases where substance abuse is being considered, eliciting the patie

as is speaking with others involved in the patient’s medical care, where 

respect for privacy issues. In this context it is important to consider 

drug-related behaviors.

48, 49 These include a broad range of behavior

ered problematic by clinicians prescribing opioids for pain. Table 3-4 

aberrant drug-related behaviors clinicians may encounter during trea

with prescription drugs.48, 49

Table 3-4: Aberrant Drug-Related Behaviors*

Behaviors more suggestive

of addiction Selling prescription drug

Prescription forgery

Stealing drugs from othe

Injecting oral formulatio

Obtaining prescription d

nonmedical sources

Concurrent abuse of alco

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Repeated visits to other c

emergency rooms withou

prescriber

Drug-related deterioratio

work, in family or socially

Repeated resistance to ch

despite adverse drug effe

Behaviors less suggestive

of addiction Aggressive complaints ab

more drugs

Drug-hoarding during per

symptoms

Requesting specific drugs

Openly acquiring similar 

medical sources

Occasional unsanctioned 

other noncompliance

Unapproved use of the dr

symptom

Reporting psychic effects 

the clinician

Resistance to a change in 

associated with tolerable 

Intense expressions of an

recurrent symptoms

* Based on clinical experience, these behaviors can be divided into those that are relatively more or l

Source: Passik SD, Portenoy RK. Substance abuse issues in palliative care. In Berger A, ed. Prin

Oncology. Philadelphia: Lippincott-Raven Publishers, 1998. Reproduced with permission. Copyrig

If aberrant behaviors are identified in a patient, the differential diag

should be explored (see Table 3-5). Aberrant behavior may occur in th

also seems likely that some behaviors are more suggestive of addiction 

ential diagnosis of all of these behaviors is broad and includes many 

other than addiction.48, 49 Psychiatric disorders, confusional states, pseu

nal intent are among the problems that should be considered. Pseud

presence of behaviors that are suggestive of addiction in a patient who

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Table 3-5: Differential Diagnosis for Aberrant Drug-Related 

Categories are not mutually exclusive

• Addiction (substance dependence disorder)

• “Pseudo-addiction”

• Psychiatric disorder associated with impulsive or aberrant d

• Personality disorder, including borderline and psychopathic

personality disorders

• Depressive disorder

• Anxiety disorder

• Encephalopathy with confusion about appropriate therapeu

• Criminal intent

• Other including “normal” or “reasonable” behavior, especial

“less” suggestive of addition

Source: Passik SD, Portenoy RK. Substance abuse issues in palliative care. In Berger A, ed. Prin

Oncology. Philadelphia: Lippincott-Raven Publishers, 1998. Reproduced with permission. Copyrig

It must be recognized that undertreatment of pain is currently a more c

clinical settings (including the HIV clinical setting) than addictio

Nonetheless, consideration and monitoring of aberrant behaviors can 

important information that can assist in assessing and treating symptom

The management of patients who have problems with substance abuse, a

drug-related behaviors for other reasons “necessitates a comprehensive 

the biological, chemical, social, and psychiatric aspects of substance 

provides practical means to manage risk, treat pain effectively and en

SYMPTOM MEASUREMENT IN CLINICAL PRACTICE

■ Recently it has been recognized that the use of symptom measurem

of improving outcomes through careful and ongoing monitoring of di

regular monitoring of pain in hospital settings is recommended to asse

in all patients at risk for pain.51, 52 Further, recommendations also sugg

teach patients and families to use assessment tools in the home to pr

management in all settings.

The principles involved in routine pain assessment may be usefully app

It is likely that the measurement of symptoms:

• Can improve patient outcomes by increasing staff awareness 

distress and the response of symptoms to treatment interven

• Has the potential to increase patient attention to reporting 

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change in appearance. Although it is beyond the scope of this chapter t

ments available for the assessment of symptoms, broadly these instrum

ries, as follows:

• Symptom-specific instruments

• Instruments for the assessment of multiple symptoms

Some instruments are more applicable in the research setting than in t

considering the use of instruments in the clinical setting, many factor

presented in Table 3-6. It is not always crucial for patients to complete 

many cases, a verbal interaction between the patient and clinician tha

symptom can provide a useful report. For example, the clinician may a

scale of 0 to 10 what level your pain is at right now? Zero refers to n

possible pain.”

Table 3-6: Considerations for Symptom Measurement in Cl

Patient-related factors Can the patient comprehend the metho

and what is the impact of the patient’s c

his or her report?

How willing and able is the patient to pr

or complete an instrument?

Are there cultural and language barrier

on the symptom report?

Is it possible that the patient may be rel

specific symptom?

Is it important, in this particular patien

symptom or multiple symptoms?

Do the patient’s descriptions for the sym

match those used in the method or instr

for reporting? (This is related to instrum

Symptom-specific factors Which symptoms and dimensions of sym

assessed, from the patient’s perspective

or “bothersomeness” is important to con

What symptoms or signs are crucial fact

E.g., in certain cases fever may be a “vit

warrant some priority in assessment.

Is the symptom important to detect and 

unnoticed? E.g., pain and confusion.

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62 U.S. Department of Health and Human Services • Health Resources and Services Administ

Clinician resources What symptoms are amenable to interv

loss may not be as amenable to interve

therefore pain may warrant a higher p

measurement.

What resources are available for monit

and collecting data from symptom repo

are asked to provide information, it is 

clinicans have the ability to review and 

information provided; unnecessary bur

imposed on patients.

What are the factors related to the me

measurement?

Has the method selected for measurem

demonstrated to be valid and reliable f

of the symptom? Is it valid and reliable 

and the patient’s particular population

Does the method selected for measure

clinically relevant symptoms, including 

impact of the symptom? I.e., the dimen

that the patient prioritizes.

Does the method selected for measure

assess the symptoms in a timely mann

symptom is present at night or on mov

measurement must reflect this.

How complex is the method selected fo

and what burden does this method of r

on the patient?

The following discussion presents the range of options available and 

may be important in selecting a method or instrument for monitoring a 

particular clinical setting. Specific instruments are discussed in detail

by figures or tables. A more comprehensive review of this subject can 

Textbook of Palliative Medicine.

17

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p(g

scales have not been validated for all symptoms, an approach in which s

with numbers or words can be useful in the routine assessment of symp

cians are using pain scores routinely in the inpatient setting along w

signs.

Instruments for Assessing Multiple Dimensions of a Symp

A more comprehensive evaluation of symptoms and their impact can b

ments that define the multiple dimensions of a specific symptom. Th

ally longer and often, therefore, less useful for routine use. An example 

the Brief Pain Inventory, shown in Figure 3-3.33 This instrument serve

intensity, location and quality. Numeric scales (range one to 10) also 

pain: pain at its worst, at its least, and pain “right now.” A percenta

from current therapies. A body figure allows localization of the pain. S

the degree to which pain interferes with function, mood and enjoymen

has now been translated into several languages.

The Memorial Pain Assessment Card (MPAC) is a brief, validated mea

logue scales to characterize pain intensity, pain relief and mood, and 

ing scale to further characterize pain intensity (see Figure 3-2). The 

scale that correlates with measures of overall psychological distress, 

and is considered to be a valid measure of global psychological distre

vides limited information but it is simple to use and reliable and theref

to use on a regular basis for monitoring difficult pain.32

Fatigue is a symptom that is among the most prevalent in patients wi

illness. Its measurement provides an example of the complexity of 

fatigue is most important in the HIV-infected population as fatigue h

significantly poorer physical functioning as well as a greater degree 

distress and lower quality of life.3

 Unlike pain, fatigue has no generall

addition, fatigue itself may impose limitations on routine assessment.

Fatigue is most usually characterized by a spectrum of disturbances t

ers, the following:

• Muscular weakness

• Lethargy

• Sleepiness

• Mood disturbance (particularly depression)

• Cognitive disturbances (such as difficulty concentrating)

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of the Profile of Mood States.53, 54, 55 Another approach involves the asse

toms associated with fatigue—for example, a visual analogue scale i

ness” and other scales are used to evaluate the patient’s cognitive sta

sional scales exist, including the 41-item Piper Fatigue Self Report Scal

the severity, distress, and impact of fatigue56 and the Visual Analogue S

18-item, multidimensional patient-rated instrument.57 While these sc

in the research setting than in the general clinical setting, the issues in

of fatigue highlight the need for accurate historytaking so the dimensio

distressing the patient can be clearly defined.

Instruments for Assessing Symptoms That May Otherwis

Instruments to detect the presence of symptoms that may otherwise go 

instruments that routinely ask patients about the presence or absenc

tiple symptoms) and those that assess for the presence of impaired co

may not be reported but may nonetheless be important. Consequentl

include routine measuring of such symptoms in clinical care. For this 

use instruments for the assessment of a single symptom (e.g., pain) or 

Cognitive impairment and its associated symptoms, problems common 

and those with far advanced illness, are amenable to such routine mo

instruments available for cognitive assessment.58 In the clinical setting

brief cognitive screens in routine assessment to improve their ability 

Screening tests for cognitive impairment include the Mini Mental Statu

Orientation-Memory-Concentration Test,60 Figures 3-5 and 3-6, respecti

have been shown to be sensitive indicators of impairment,61, 62, 63 clini

that the instruments are not specific for the diagnosis of delirium or 

may occur in advanced HIV-related illness. Further assessment would 

diagnoses. (See Chapter 10: Psychiatric Problems.)

Instruments for Assessing Multiple Symptoms

Instruments may be needed to assess and monitor multiple symptom

amount of research has focused on the role in routine clinical use of 

multiple symptoms. Even less information is available that applies dire

infection.

In clinical settings, the main problem with instruments that assess mu

their length (which may limit their clinical utility for routine use). Nonet

are available that could be considered for use in monitoring multiple s

Symptom Assessment Scale (ESAS) is a nine-item, patient-rated sympt

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provides multidimensional information about a diverse group of comm

3-1). This instrument assesses 32 physical and psychological sympto

frequency and distress. The MSAS has been used in research studies o

HIV-related illness and has been modified for the pediatric setting.3, 5, 

helpful measure in research settings, its utility in the routine clinica

Recent research has, however, explored the role of an MSAS short vers

be more useful in the clinical setting.7

Holzemer, et al., recently published research to validate a sign and sym

assessing the intensity of HIV-related symptoms.66 The current versio

instrument is also likely to be used in the research setting; howeve

consider its clinical applications.

Using Signs to Monitor Symptoms

Some clinical signs may be useful indicators of symptoms and there

monitor these routinely in certain clinical settings. For example, the m

perature or the frequency of bowel movements and/or emesis may be u

detecting—or even anticipating and preventing—symptoms that re

sweats, chills, abdominal pain, and nausea).

In summary, measurement has a key role in the assessment of sympt

frequently have limitations, if clinicians remain aware of these limitat

symptoms is likely to enhance their ability to effectively monitor and t

CONCLUSION

■ Systematic symptom assessment is a foundation of clinical practice 

HIV-related disease. Careful and meticulous clinical assessment sh

perception of distressing symptoms and the pathophysiology responsi

comprehensive assessment will facilitate the development of a treatme

treating reversible pathologic processes, alleviating distress, and prom

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Instructions: We have listed 24 symptoms below. Read each one carefully. 

tom during this past week, let us know how OFTEN you had it, how SEVE

much it DISTRESSED OR BOTHERED you by circling the appropriate num

the symptom, mark an “X” in the box marked “DID NOT HAVE.”

If YES, If YES, 

How OFTEN How SEVERE 

did you have it? was it usually? 

Did Not Have

Rarely

Occasionally

FrequentlyConstantlyAlmostSlightModerateSevere

Very Severe

During the

past week,

did you have

any of the

following

symptoms?

• Difficulty concentrating 1 2 3 4 1 2 3 4 

• Pain 1 2 3 4 1 2 3 4 

• Lack of energy 1 2 3 4 1 2 3 4 

• Cough 1 2 3 4 1 2 3 4 

• Feeling nervous 1 2 3 4 1 2 3 4 

• Dry mouth 1 2 3 4 1 2 3 4 

• Nausea 1 2 3 4 1 2 3 4 

• Feeling drowsy 1 2 3 4 1 2 3 4 

• Numbness/tingling

 in hands/feet 1 2 3 4 1 2 3 4 

• Difficulty sleeping 1 2 3 4 1 2 3 4 

• Feeling bloated 1 2 3 4 1 2 3 4 

• Problems with urination 1 23 4 123 4 

• Vomiting 1 2 3 4 1 2 3 4 

• Shortness of breath 1 2 3 4 1 2 3 4 

• Diarrhea 1 2 3 4 1 2 3 4 

• Feeling sad 1 2 3 4 1 2 3 4 

• Sweats 1 2 3 4 1 2 3 4 

• Worrying 1 2 3 4 1 2 3 4 

• Problems with sexual

 interest or activity 1 2 3 4 1 2 3 4 

• Itching 1 2 3 4 1 2 3 4 

• Lack of appetite 1 2 3 4 1 2 3 4 

• Dizziness 1 2 3 4 1 2 3 4 

• Difficulty swallowing 1 2 3 4 1 2 3 4 

• Feeling irritable 1 2 3 4 1 2 3 4 

Chpt 3 1-17-03.p65 66 1
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

• Mouth sores 1234 

• Change in the way food tastes 1234 

• Weight loss 1234 

• Hair loss 1234 

• Constipation 1234 

• Swelling of arms or legs 1234 

• “I don’t look like myself” 1234 

• Changes in skin 1234 

Other: 

Other: 

Other: 

Instructions: We have listed 8 symptoms below. Read each one carefully. 

tom during this past week, let us know how SEVERE it was usually and how 

BOTHERED you by circling the appropriate number. If you DID NOT HAVE 

in the box marked “DID NOT HAVE.”

During the

Slight

Moderate

Severe

Very SevereNot At All

past week,

did you have

any of the

following

symptoms?

**If you had any other symptoms during the past week, please list below

and indicate how much the symptom has distressed or bothered you.

Figure 3-1 revised version of the Memorial Symptom Assessment Scale. Copyright 1994, reprinted wit

Ltd, The Boulevard, Langford Lane, Kidlington OX5 1GB, UK. Did Not Have

If YES, 

How SEVERE 

did you have it? 

Source: Portenoy RK, Thaler HT, Kornblith AB, et al. The Memorial Symptom Assessment Scale: 

symptom prevalence, characteristics and distress. Eur J Cancer 30A:1326-36, 1994. Copyright 199

Elsevier Science Ltd.

Chpt 3 1-17-03.p65 67 1
68 U.S. Department of Health and Human Services • Health Resources and Services Administ

Worst mood Best mood

4

Mood Scale

Least

possible

pain

Worst

possible

pain

1

Pain Scale

2

No relief

of pain

Moderate

Strong

Just noticeable

No pain

Excruciating Severe

Mild

Weak

Comp

relief 

pain

3

Relief Scale

Source: Fishman B, Pasternack S, Wallenstein SL, et al. The Memorial Pain Assessment Card. A va

cancer pain. Cancer 60:1151-8, 1987. Reproduced with permission.

Chpt 3 1-17-03.p65 68 1
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

Name: __________________________________________________________

LAST FIRST 

Phone: ( ________ ) _________________________________________ S

Date of Birth: ________________________________________

Marital Status (at present)

1. ❑ Single 3. ❑ Widowed

2. ❑ Married 4. ❑ Separated/Divorced

Education (Circle only the highest grade or degree completed)

Grade 0 123456

10 11 12 13 14 16 M.A./M

Professional degree (please specify) ___________________

Current occupation: ___________________________________________

(specify titles; if you are not working, tell us your previous occup

Spouse’s Occupation: _________________________________________

Which of the following best describes your current job status?

 ❑ 1. Employed outside the home, full-time ❑ 4

 ❑ 2. Employed outside the home, part-time ❑ 5

 ❑ 3. Homemaker ❑ 6

How long has it been since you first learned your diagnosis? __

Have you ever had pain due to your present disease?

 1. ❑ Yes 2. ❑ No 3. ❑ Uncertain

When you first received your diagnosis, was pain one of your sympt

 1. ❑ Yes 2. ❑ No 3. ❑ Uncertain

Have you had surgery in the past month? 1. ❑ Yes 2. ❑ 

Throughout our lives, most of us have had pain from time to time (su

headaches, sprains, and toothaches). Have you had pain other than

these everyday kinds of pain during the last week? 

If you answered YES to the last question, please go on to question 1

questionnaire. If NO, you are finished with the questionnaire. Thank 

On the diagram, shade in the areas where you feel pain. Put an X on 

that hurts the most.

1

2

3

4

5

6

7

8

9

10

11

FRONT BACK

Chpt 3 1-17-03.p65 69 1
70 U.S. Department of Health and Human Services • Health Resources and Services Administ

0 1 2 3 4 5 6 7 

No Pain 

Please rate your pain by circling the one number that best describe

the last week.

0 1 2 3 4 5 6 7 

No Pain 

Please rate your pain by circling the one number that best describe

average.

0 1 2 3 4 5 6 7 

No Pain 

Please rate your pain by circling the one number that tells how mu

now.

0 1 2 3 4 5 6 7 

No Pain 

What kinds of things make your pain feel better (for example, head, 

____________________________________________________________

____________________________________________________________

What kinds of things make your pain worse (for example,walking, st

____________________________________________________________

____________________________________________________________

What treatments or medications are you receiving for your pain?

____________________________________________________________

____________________________________________________________

In the last week, how much relief have pain treatments or medicatio

Please circle the one percentage that most shows how much relief y

0% 10% 20% 30% 40% 50% 60% 70% 

No Relief 

If you take pain medication, how many hours does it take before the 

❑ 1. Pain medication doesn’t help at all ❑ 5. Four hour

❑ 2. One hour ❑ 6. Five to tw

❑ 3. Two hours ❑ 7. More than 

❑ 4. Three hours ❑ 8. I do not ta

Circle the appropriate answer for each item. I believe my pain is du

❑ Yes ❑ No 1. The effects of treament (for example, medicati

prosthetic device).

❑ Yes ❑ No 2. My primary disease (meaning the disease cur

being treated and evaluated).

❑ Yes ❑ No 3. A medical condition unrelated to primary disea

(for example, arthritis).

13

14

15

16

17

18

19

20

21

Chpt 3 1-17-03.p65 70 1
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

Source: Charles S Cleeland. Pain Research Group, MD Anderson Cancer Center. Coypright 1991. 

g 

Throbbing ❑ Yes ❑ No Burning ❑ Yes ❑ No Misera

Shooting ❑ Yes ❑ No Exhausting ❑ Yes ❑ No Unbea

Stabbing ❑ Yes ❑ No Tiring ❑ Yes ❑ No

Gnawing ❑ Yes ❑ No Penetrating ❑ Yes ❑ No

Sharp ❑ Yes ❑ No Nagging ❑ Yes ❑ No

Circle the one number that describes how, during the past week, p

interfered with your:

A. General Activity

0 1 2 3 4 5 6 7 

Does not Interfere 

B. Mood

0 1 2 3 4 5 6 7 

Does not Interfere 

C. Walking ability

0 1 2 3 4 5 6 7 

Does not Interfere 

D. Normal work (includes both work outside the home and hou

0 1 2 3 4 5 6 7 

Does not Interfere 

E. Relations with other people

0 1 2 3 4 5 6 7 

Does not Interfere 

F. Sleep

0 1 2 3 4 5 6 7 

Does not Interfere 

G. Enjoyment of life

0 1 2 3 4 5 6 7 

Does not Interfere 

23

Chpt 3 1-17-03.p65 71 1
72 U.S. Department of Health and Human Services • Health Resources and Services Administ

Pain Interview usually can be used. When children are unable to desc

as occurs with infants and pre-verbal children, they must be watched 

signs of pain. Some examples of assessment tools appear below. (See 

and 3-4d.)

Figure 3-4a: Pain Affect Faces Scale

Source: Wong DL, Hockenberry-Eaton M, Wilson D, Winkelstein ML, Schwartz P. Wong’s Essent

St. Louis: Mosby, Inc., 2001. Copyrighted by Mosby, Inc. Reprinted by permission.

Explain to the person that each face is for a person who feels happy 

(hurt) or sad because he has some or a lot of pain. Face 0 is very happy 

at all. Face 2 hurts just a little bit. Face 4 hurts a little more. Face 6 h

hurts as much as you can imagine, although you don’t have to be crying 

person to choose the face that best describes how he is feeling.

Rating scale is recommended for persons age 3 and older.

Wong-Baker FACES Pain Rating Sc

Chpt 3 1-17-03.p65 72 1
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

No pain Worst possible pain Mild pain Moderate pain Severe pain Very severe pain

0

No

pain

12345

Moderate

pain

6 7 8 9 10

Worst

possible

pain

0-10 Numeric Pain Intensity Scale1

N

P

i

b

d

Visual Analog Scale (VAS)2

Simple Descriptive Pain Intensity Scale*

0-10 Numeric Pain Intensity Scale*

Visual Analog Scale (

VA

S) **

Chpt 3 1-17-03.p65 173
74 U.S. Department of Health and Human Services • Health Resources and Services Administ

Source: Cancer Pain Relief and Palliative Care in Children. World Health Organization, 1998. R

Copyright 1998.

Primary behavioral signs indicative of pain 

Behavioral signs 

• Crying 

• Distressed facial expression 

• Motor disturbances (localized and whole body) 

• Lack of interest in surroundings 

• Decreased ability to concentrate 

• Sleeping difficulties 

Pain Interview is a self-report method of pain assessment that pro

estimates of pain intensity, quality and location. This method of as

most children over six years of age.

Source: Adapted with permission from Hester NO, Barcus CS. Assessment and management of pai

Update, vol 1. Princeton, NJ: Continuing Professional Education Center, Inc., 1986.

Figure 3-4d: Pain Interview for Pediatric Patients

Pain Interview

Child Form Paren

Tell me about the 

child is having now

Elicit descriptors, 

and cause.

What would you l

for your child?

Tell me about the hurt you’re

having now.

Elicit descriptors, location,

and cause.

What would you like me to do

for you?

Chpt 3 1-17-03.p65 74 1
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

lirium is especially common in the palliative care setting.

This tool has been used as an initial screen to alert clinicians to the 

impairment and to monitor this condition. The MMSE is provider-ad

takes five to 10 minutes to complete. A score of 23 or less generally has 

off for cognitive impairment; however, it is important to note that a 

and language ability can affect the usefulness of MMSE scores and cu

MMSE Sample Items

Orientation to Time

“What is the date?”

Registration

“Listen carefully, I am going to say three word

You say them back after I stop.

Ready? Here they are

HOUSE (pause), CAR (pause), LAKE (pause

Now repeat those words back to me.”

[Repeat up to 5 times, but score only the first 

Naming

“What is this?” [Point to a pencil or pen.]

Reading

“Please read this and do what it says. “

[Show examinee the words on the stimulus fo

CLOSE YOUR EYES.]

©1975, 1998, 2001 by MiniMental, LLC. All rights reserved. Published 2001 by Psychological Asse

reproduced in whole or in part in any form or by any means without written permission of Psychol

P.O. Box 998, Odessa, FL 33556. The complete MMSE can be purchased from PAR, Inc., by calling (

Source: Reproduced by special permission of the Publisher, Psychological Assessment Resources

Lutz, Florida 33549, from the MiniMental State Examination, by Marshal Folstein and Susan Folste

Chpt 3 1-17-03.p65 75 1
76 U.S. Department of Health and Human Services • Health Resources and Services Administ

time of day, count 20 to one backwards, month, year, months backwa

As with the MMSE, this tool is sometimes used as an initial screen 

possibility of cognitive impairment and to monitor this condition. 

tered and usually takes less than five minutes to complete. Like MMSE

tor of cognitive impairment but not diagnosis-specific for delirium o

Source: Diagnostic and Statistical Manual of Mental Disorders, 4th edition, text revision. Wash

Association, 2000. Copyright 2000, American Psychiatric Association. Reproduced with permission

Score of 1 for each incorrect response; maximum weighted error score 

A score above 10 is rated as abnormal.

MAXIMUM

ITEMS ERROR SCORE W

1 What year is it now? 1 ________ x 

2 What month is it now? 1 ________ x 

Memory Repeat this phrase after me:

phrase John Brown, 42 Market Street,

Chicago

3 About what time is it? 1 ________ x 

4 Count backwards 20 to 1 2 ________ x 

5 Say the months in reverse order 2 ________ x 

6 Repeat the memory phrase 5 ________ x 

Chpt 3 1-17-03.p65 76 1
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

a numerical scale, 0 meaning that the symptom is absent and 10 that 

severity. The patient is asked to circle the most appropriate number o

indicate where the symptom lies between the two extremes. The circ

transcribed onto a Symptom Assessment Graph.

Ideally, patients fill out their own ESAS. Although caregiver-provide

limitations, if a patient cannot independently complete the ESAS, th

given to having a caregiver assist the patient in completing this ins

assistance was needed should always be documented in the space prov

ESAS Numerical Scale and the Graph, and the validity of this repor

ered carefully.

This instrument can be used for monitoring symptoms in the hosp

setting (through telephone or personal contact). It has been used in so

basis. In other settings—for example, in in-patient hospices or tertia

it is often used on more frequent, sometimes daily, basis.

Please circle the number that best describes:

No Pain 0 1 2 3 4 5 6 7 8 

Not Tired 0 1 2 3 4 5 6 7 8 

Not Nauseated 0 1 2 3 4 5 6 7 8 

Not Depressed 0 1 2 3 4 5 6 7 8 

Not Anxious 0 1 2 3 4 5 6 7 8 

Not Drowsy 0 1 2 3 4 5 6 7 8 

Best Appetite 0 1 2 3 4 5 6 7 8 

Best Feeling 

of Well Being 0 1 2 3 4 5 6 7 8 

No 

Shortness 0 1 2 3 4 5 6 7 8 

of Breath 

Other Problems 0 1 2 3 4 5 6 7 8 

Edmonton Symptom Assessment: Numer

Source: Bruera E, Kuehn N, Miller MJ, Macmillan K. The Edmonton Symptom Assessment Scale: a 

of palliative care patients. J Palliat Care 7:6-9, 1991. Reproduced with permission. Copyright 199

Chpt 3 1-17-03.p65 77 1
78 U.S. Department of Health and Human Services • Health Resources and Services Administ

Room#: ____________________________________________

Please cross the line at the point that best describes: (For coding)

No Pain ______________________________________________________________

Not Tired ______________________________________________________________

Not Nauseated ______________________________________________________________

Not Depressed ______________________________________________________________

Not Anxious ______________________________________________________________

Not Drowsy ______________________________________________________________

Best Appetite ______________________________________________________________

Best Feeling 

of Well Being ______________________________________________________________

No Shortness 

of Breath ______________________________________________________________

Other Problems ______________________________________________________________

Assessed by: ______________________________________

Source: Bruera E, Kuehn N, Miller MJ, Macmillan K. The Edmonton Symptom Assessment Scale: a 

of palliative care patients. J Palliat Care 7:6-9, 1991. Reproduced with permission. Copyright 199

Chpt 3 1-17-03.p65 78 1
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

DATE

HOSP DAY

TIME

PAIN

ACTIVITY

NAUSEA

DEPRESSION

ANXIETY

DROWSINESS

APPETITE

WELL BEING

SHORTNESS

OF BREATH

ASSESSED BY

MINI-MENTAL

STATE SCORE

Source: Bruera E, Kuehn N, Miller MJ, Macmillan K. The Edmonton Symptom Assessment Scale: a 

of palliative care patients. J Palliat Care 7:6-9, 1991. Reproduced with permission. Copyright 199

Chpt 3 1-17-03.p65 79 1
80 U.S. Department of Health and Human Services • Health Resources and Services Administ

➨ ➨ IF YES: How much did it DISTRE

Yes Not at A little Some- 

All Bit what 

[✓] [0] [1] [2] 

Difficulty concentrating

Pain

Lack of energy

Cough

Changes in skin

Dry mouth

Nausea

Feeling drowsy

Numbness/tingling in hands

& feet

Difficulty sleeping

Feeling bloated

Problems with urination

Vomiting

Shortness of breath

Diarrhea

Sweats

Mouth sores

Problems with sexual interest

or activity

Itching

Lack of appetite

Dizziness

Difficulty swallowing

Change in the way food tastes

Weight loss

Hair loss

Constipation

Swelling of arms or legs

ìI donít look like myself.î

If you had any other symptoms

during the PAST WEEK, please

list them below, and indicate how

much the symptom DISTRESSED

or BOTHERED you.

1.

2.

II. Below are other commonly listed symptoms. Please indicate if you have had the symptom DU

so, how OFTEN it occurred.

➨ ➨ IF YES: How OFTEN d

Yes 

Rarely Occasionally Freq

[✓] [1] [2] [

Feeling sad

Worrying

Feeling irritable

Feeling nervous

usually take less than five minutes to complete. For patients with lim

may be an effective instrument for monitoring symptoms in an in- o

Source: Chang VT, Hwang SS, Feuerman M, Kasimis BS, Thaler BT. The Memorial Sympton Assessm

Cancer 89:1162-71, 2000. Copyright 2000, American Cancer Society. Reproduced with permission o

Wiley and Sons, Inc.

I. INSTRUCTIONS: Below is a list of symptoms. If you had the symptom DURING THE PAST 

If you did have the symptom, please check the box that tells us how much the symptom DISTRE

Check all the symptoms you have

had during the PAST WEEK.

Check all the symptoms you have

had during the PAST WEEK.

Chpt 3 1-17-03.p65 80 1
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

1. Meyer M. Palliative care and AIDS: 2—gastrointestinal symptoms. Int J STD A

1999.

2. Breitbart W, McDonald MV, Rosenfeld B, et al. Pain in ambulatory AIDS patient

medical correlates. Pain 68:315-21, 1996.

3. Breitbart W, McDonald MV, Rosenfeld B, Monkman ND, Passik S. Fatigue in am

J Pain Symptom Manage 15:159-67, 1998.

4. Fantoni M, Ricci F, Del Borgo C, et al. Multicentre study on the prevalence of sy

treatment in HIV infection. Central Italy PRESINT Group. J Palliat Care 13:9-1

5. Vogl D, Rosenfeld B, Breitbart W, et al. Symptom prevalence, characteristics, an

outpatients. J Pain Symptom Manage 18:253-62, 1999.

6. Portenoy RK, Thaler HT, Kornblith AB, et al. The Memorial Symptom Assessmen

the evaluation of symptom prevalence, characteristics and distress. Eur J Canc

7. Chang VT, Hwang SS, Feuerman M, Kasimis BS, Thaler HT. The Memorial Symp

form (MSAS-SF). Cancer 89:1162-71, 2000.

8. Breitbart W, Rosenfeld BD, Passik SD, et al. The undertreatment of pain in amb

65:243-9, 1996.

9. Farsides CC. Allowing someone to die. In Sherr L, ed. Grief and AIDS. New Yo

1995.

10. Rosenfeld B, Breitbart W, McDonald MV, et al. Pain in ambulatory AIDS patient

psychological functioning and quality of life. Pain 68:323-8, 1996.

11. Cleary PD, Fowler FJ, Weissman J, et al. Health-related quality of life in person

Deficiency Syndrome. Med Care 31:569-80, 1993.

12. Revicki DA, Wu AW, Murray MI. Change in clinical status, health status, and hea

infected patients. Med Care 33(4 Suppl): AS173-82, 1995.

13. Cohen SR, Hassan SA, Lapointe BJ, Mount BM. Quality of life in HIV disease as 

quality of life questionnaire. AIDS 10:1421-7, 1996.

14. Hewitt DJ, McDonald M, Portenoy RK, et al. Pain syndromes and etiologies in a

Pain 70:117-23, 1997.

15. Wachtel T, Piette J, Mor V, et al. Quality of life in persons with human immunod

measurement by the Medical Outcomes Study instrument. Ann Intern Med 116

16. Ingham JM, Portenoy RK. Symptom assessment. In Cherny NI, Foley KM, eds. 

Clinics of North America. Philadelphia: W.B. Saunders, 1996.

17. Ingham JM, Portenoy RK. The measurement of pain and other symptoms. In D

MacDonald N, eds. Oxford Texbook of Palliative Medicine, 2nd ed. Oxford: Oxf

18. The New Shorter Oxford English Dictionary. Oxford: Clarendon Press, 1993.

19. International Association for the Study of Pain: Subcommittee on Taxonomy. P

definitions and notes on usage. Pain 8:249-52, 1980.

20. Grossman SA, Sheidler VR, Swedeen K, Mucenski J, Piantadosi S. Correlation o

ratings of cancer pain. J Pain Symptom Manage 6:53-7, 1991.

Chpt 3 1-17-03.p65 81 1
82 U.S. Department of Health and Human Services • Health Resources and Services Administ

24. Kahn SB, Houts PS, Harding SP. Quality of life and patients with cancer: a com

versus physician perceptions and its implications for cancer education. J Cance

25. Dunlop GM. A study of the relative frequency and importance of gastrointestina

patients with far advanced cancer. Palliat Med 4:37-43, 1989.

26. Welch JM, Barlow D, Richardson PH. Symptoms of HIV disease. Palliat Med 5:4

27. Portenoy RK, Hagen NA. Breakthrough pain: definition, prevalence and charac

1990.

28. Portenoy RK, Thaler HT, Kornblith AB, et al. Symptom prevalence, characterist

population. Qual Life Res 3:183-9, 1994.

29. Chang VT, Hwang SS, Feuerman M, Kasimis BS. Symptom and quality of life sur

patients at a veterans affairs medical center: a role for symptom assessment. C

30. Aaronson NK, Acquadro C, Alonso J, et al. International Quality of Life Assessm

Life Res 1:349-51, 1992.

31. Cella DF. Measuring quality of life in palliative care. Semin Oncol 22(2 Suppl 3

32. Fishman B, Pasternack S, Wallenstein SL, et al. The Memorial Pain Assessment 

the evaluation of cancer pain. Cancer 60:1151-8, 1987.

33. Daut RL, Cleeland CS, Flanery RC. Development of the Wisconsin Brief Pain Qu

cancer and other diseases. Pain 17(2):197-210, 1983.

34. Lo B, Quill T, Tulsky J. Discussing palliative care with patients. ACP-ASIM End

Panel, American College of Physicians/American Society of Internal Medicine. A

1999.

35. Bruera E, Fainsinger RL, Miller MJ, Kuehn N. The assessment of pain intensity 

failure: a preliminary report. J Pain Symptom Manage 7:267-70, 1992.

36. Green SDR. AIDS: Palliative care aspects in children. In Doyle D, Hanks GWC, M

Textbook of Palliative Medicine, 2nd ed. New York: Oxford University Press, 199

37. Jay S, Elliot C, Katz E, Seigal S. Cognitive-behavioral and pharmacologic interve

during painful medical procedures. J Consult Clin Psychol 55:860-5, 1987.

38. Katz E, Kellerman J, Ellenberg L. Hypnosis in the reduction of acute pain and d

cancer. J Ped Psychol 12:379-94, 1987.

39. LeBaron S, Zeltzer LK. Assessment of pain and anxiety in children and adolesce

behavior checklist. J Consult Clin Psychol 52:729-38, 1984.

40. Kuttner L, Bowman M, Teasdale M. Psychological treatment of distress, pain an

cancer. J Dev Behav Ped 9:374-81, 1988.

41. Manne S, Redd WH, Jacobson P, et al. Behavioral intervention to reduce child a

venipuncture. J Consult Clin Psychol 58:565-72, 1990.

42. Jay S, Elliott C. Behavioral observation scales for measuring childrens’ distress

methodological rigor. J Consult Clin Psychol 52:1106-7, 1984.

43. Elliott C, Jay S, Woody P. An observational scale for measuring childrens’ distre

J Ped Psychol 12:543-51, 1987.

44. Collins JJ, Byrnes ME, Dunkel IJ, et al. The measurement of symptoms in child

Symptom Manage 19:363-77, 2000.

Chpt 3 1-17-03.p65 82 1
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

48. Passik SD, Kirsh KL, Portenoy RK. Understanding aberrant drug-taking behavio

palliative care and pain management settings. Principles and Practice of Supp

12, 1999.

49. Passik SD, Portenoy RK. Substance abuse issues in palliative care. In Berger A

DE, eds. Principles and Practice of Supportive Oncology, 1st ed. Philadelphia

Publishers, 1998.

50. Lowinson JH, Ruiz P, Millman RB, eds. Comprehensive Textbook of Substance A

Williams and Wilkins, 1997.

51. Jacox A, Carr DB, Payne R, et al. Clinical Practice Guideline #9: Management o

Publication #94-0592). Washington, DC: U.S. Dept. of Health and Human Servic

Policy and Research, 1994.

52. Max M. American Pain Society quality assurance standards for relief of acute p

MR, Charlton JE, Woolf CJ, eds. Proceedings of the 6th World Congress on Pain. 

53. McCorkle R, Young K. Development of a symptom distress scale. Cancer Nurs 1

54. de Haes JCJM, van Kippenberg FCE, Neijt JP. Measuring psychological and phy

patients: structure and application of the Rotterdam Symptom Checklist. Br J C

55. McNair D, Lorr M, Deoppleman LF. Profile of Mood States Manual. San Diego: 

Testing Service, 1971.

56. Piper BF, Lindsey AM, Dodd MJ, et al. The development of an instrument to me

dimension of fatigue. In Funk SG, Tornquist EM, Champange MT, Copp LA, Wie

Comfort: Management of Pain, Fatigue and Nausea. New York: Springer Publ

57. Lee KA, Hicks G, Nino-Murcia G. Validity and reliability of a scale to assess fatig

1991.

58. Smith MJ, Breitbart WS, Platt MM. A critique of instruments and methods to de

delirium. J Pain Symptom Manage 10:35-77, 1995.

59. Folstein MF, Folstein SE, McHugh PR. Mini-mental state. J Psych Res 12:189-9

60. Katzman R, Brown T, Fuld P, et al. Validation of a short orientation-memory con

impairment. Am J Psychiatry 140:734-9, 1983.

61. Bruera E, Miller L, McCallion J, et al. Cognitive failure in patients with termina

J Pain Symptom Manage 7:192-5, 1992.

62. Stiefel F, Fainsinger R, Bruera E. Acute confusional states in patients with adva

Symptom Manage 7:94-8, 1992.

63. Fainsinger RL, Tapper M, Bruera E. A perspective on the management of deliriu

on a palliative care unit. J Palliat Care 9:4-8, 1993.

64. Bruera E, Kuehn N, Miller MJ, Selmser P, Macmillan K. The Edmonton Symptom 

a simple method for the assessment of palliative care patients. J Palliat Care 7

65. Chang VT, Hwang SS, Feuerman M. Validation of the Edmonton Symptom Asses

71, 2000.

66. Holzemer WL, Henry SB, Nokes KM, et al. Validation of the sign and symptom ch

disease (SSC-HIV). J Adv Nurs 30:1041-9, 1999.

Chpt 3 1-17-03.p65 83 1
Chpt 3 1-17-03.p65 84 1
U.S. Department of Health and Human Services • Health Resources and Services Administration 

William Breitbart, MD

OVERVIEW

■ The advent of highly active antiretroviral treatment has not diminish

care for people living with HIV/AIDS. In fact, because of new treatments

from HIV/AIDS in the U.S. and the total number of people living with HIV

treatments, particularly HAART, are also responsible for additional symp

including pain that must be understood and managed. Additionally, as the 

epidemic changes in the United States, the challenge of managing pain i

a history of substance abuse is a growing issue.

Several studies have documented that pain in individuals with HIV infec

• Highly prevalent, diverse, and varied in syndromal presentation

• Associated with significant psychological and functional morbidi

• Alarmingly undertreated

Moreover, pain has a profound negative impact both on physical and psyc

overall quality of life.7, 11 It is important, therefore, that pain management b

total care of patients with HIV disease.13 This chapter describes the typ

syndromes encountered in patients with HIV disease and reviews the psy

impact of pain as well as the barriers to adequate pain treatment in thi

chapter outlines the principles of pain management.

Pain is classified in two major categories, nociceptive and neuropathic pa

ceptive pain derives from the stimulation of intact ‘nociceptors’ or pain re

and is further subdivided into somaticpain (involving skin, soft tissue, mus

pain (involving internal organs and hollow viscera). Nociceptive pain ma

mon in somatic pain) or more diffuse (common in visceral pain), and m

gnawing, throbbing, constant, or spasmodic, with varying intensity. Neurop

lation of damaged or compromised nerve tissue, and may be burning, tin

with a sensation of electric shock, or allodynia (the sensation of pain or 

minimal stimulus such as light touch to the skin). The differentiation of p

types (particularly nociceptive vs. neuropathic) can help in determinin

further discussed.

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internal organs, hollow viscera)

• Responds to opioid and non-opioid analgesics

Neuropathic Pain

• Results from stimulation of damaged or compromised nerve tis

• Responds to opioid and non-opioid analgesics AND adjuvant m

Summary of Pain Syndromes in HIV/AIDS

Pain syndromes encountered in AIDS are diverse in nature and etiology 

common pain syndromes reported in studies to date include painful senso

pain due to extensive Kaposi’s sarcoma, headache, oral and pharyngeal pa

pain, arthralgias and myalgias, and painful dermatologic conditions.4, 

Table 4-2: Pain Syndromes and Most Common Pain Diagnose

 Pain Type N % Patie

Somatic pain 107 

Neuropathic pain 69 

Visceral pain 44 

Headache 69 

 Pain Diagnosis

Joint pains 47 

Polyneuropathy 42 

Muscle 40 

Skin 23 

Bone 31 

Abdominal 25 

Chest 19 

Radiculopathy 18 

Source: Reprinted with permission from Hewitt D, McDonald M, Portenoy R, et al. Pain syn

latory AIDS patients. Pain 70:117-23, 1997.

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related to HIV infection or consequences of immunosuppression; those d

those unrelated to AIDS or AIDS therapies (see Table 4-3).

Table 4-3: Pain Syndromes in HIV/AIDS Patients

Pain Related to HIV/AIDS

• HIV neuropathy

• HIV myelopathy

• Kaposi’s sarcoma

• Secondary infections (intestines, skin)

• Organomegaly

• Arthritis/Vasculitis

• Myopathy/Myositis

Pain Related to HIV/AIDS Therapy

• Antiretrovirals, Anti-virals

• Anti-mycobacterials, PCP prophylaxis

• Chemotherapy (vincristine)

• Radiation

• Surgery

• Procedures (bronchoscopy, biopsies)

Pain Unrelated to AIDS

• Disc disease

• Diabetic neuropathy

In studies to date, approximately 45% of pain syndromes encountered a

infection or consequences of immunosuppression; 15% to 30% are due to t

related conditions and to diagnostic procedures; and the remaining 25% to 

or its therapies.2, 6

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opportunistic infectious processes and cancers of the pelvis and genito

survey women with AIDS were significantly more likely to be diagnose

headache.6, 20

Pain in Children with HIV/AIDS

Children with HIV infection also experience pain.21 HIV-related cond

observed to cause pain include:

• Meningitis and sinusitis (headaches)

• Otitis media

• Shingles

• Cellulitis and abscesses

• Severe candida dermatitis

• Dental caries

• Intestinal infections, such as mycobacterium aviumintracell

Cryptosporidium

• Hepatosplenomegaly

• Oral and esophageal candidiasis and

• Spasticity associated with encephalopathy that causes painful 

For more information on HIV palliative care in children, see Chapter 12: 

Adolescents.

SPECIFIC PAIN SYNDROMES IN PATIENTS WITH HIV D

■ The following section reviews, in detail, the various painful manifesta

author acknowledges the important review by O’Neill and Sherrard tha

section on specific pain syndromes in HIV disease.10

Gastrointestinal Pain Syndromes

Many of the opportunistic infections and HIV-associated neoplasms as w

commonly used antiretroviral medications may present as pain referab

tract. Generally the pain will be alleviated by specific treatment of the caus

ing treatments. Adequate analgesia should be provided during diagnosti

For more information, see Chapter 7: Gastrointestinal Symptoms.

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tion, or histoplasmosis. Frequently no infectious agent can be identified an

aphthous ulcers (RAU) are a clinically challenging problem.10 RAU can b

steroids (mixed with Orabase), systemic steroids, and/or thalidomide. U

cutaneous Kaposi’s sarcoma (KS) also have intraoral lesions, most commo

these seldom cause pain.10 Finally, zalcitabine (ddC) can cause a painful s

mation, see Chapter 8: Oral Problems.

Esophageal Pain

Many HIV/AIDS patients experience dysphagia or odynophagia, most co

ageal candidiasis. Ulcerative esophagitis, which can be quite painful, is usu

tion but can be idiopathic. Thalidomide has been used successfully in th

Infectious causes of esophagitis include: HIV itself, papovavirus, herpes si

mycobacteria, Cryptosporidium and Pneumocystis carinii. Kaposi’s sar

have been reported to invade the esophagus resulting in dysphagia, pain an

and zalcitibine (ddC) have been implicated in esophagitis as have been n

Abdominal Pain

The abdomen is the primary site of pain in 12-25% of patients with HIV dise

of abdominal pain predominate, and include: cryptosporidiosis, s

Campylobacter enteritis, CMV ileitis and mycobacterial infection (MAI)

Perforation of the small and large intestine secondary to CMV infection 

peated intussusception of the small intestine has been seen in associat

infection.23 Lymphoma in the gastrointestinal (GI) tract can present with 

tinal obstruction.10, 24 Other causes of abdominal pain in HIV positive 

organomegaly, spontaneous aseptic peritonitis, toxic shock, herpes zoster

drome (perihepatitis in association with tubal gonococcal or chlamydia 

Many antiretroviral agents are responsible for GI symptoms but lactic a

complication of some HAART regimens, can present with abdominal 

zalcitabine (ddC) and stavudine (d4T) can cause pancreatitis (see below) an

are at increased risk for nephrolithiasis.

Biliary Tract and Pancreatic Pain

Cholecystitis is a painful condition that may occur in HIV-infected patient

tic infection, with CMV and cryptosporidiosis being the most common inf

extrahepatic biliary tract obstruction secondary to KS or MAI infection ha

ing cholangitis (CMV, cryptosporidiosis) can cause right upper quadra

opportunistic liver infections (CMV, MAI, fungal infections) as well as dru

ties (ddI, pentamidine, ritonavir and nevarapine) are sources of hepatit

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infection, cryptococcal lymphoma and KS.

Anorectal Pain

Painful anorectal diseases are often caused by perirectal abscesses, CMV 

and HPV and HSV infection.

Chest Pain Syndromes

Chest pain is a common complaint in patients with HIV disease, comp

of the pain syndromes encountered in a sample of ambulatory AIDS patie

in patients with HIV disease are similar to those encountered in the gener

esophageal, lung and pleura, and chest wall. However, the etiologies may 

opportunistic infections and cancers. The index of suspicion for corona

young patients with no other risk factors, must be high if the patient is be

In immunosuppressed patients, infectious causes of chest pain should be c

the presence of fever and some localizing sign such as dysphagia, dysp

causes of chest pain include the following:

• Pneumocystis pneumonia (with or without a pneumothorax)

• Esophagitis (CMV, candidiasis, herpes simplex)

• Pleuritis/pericarditis (viral, bacterial, tuberculous)

• Post-herpetic neuralgia

Opportunistic cancers (KS, lymphoma) invading the esophagus, pericard

pleura may also be sources of chest pain. Rarely, pulmonary embolus or bac

the cause of chest pain.

For more information, see Chapter 6: Pulmonary Symptoms.

Neurological Pain Syndromes

Pain syndromes originating in the nervous system include headache, 

pathies, radiculopathies, and myelopathies.

The HIV virus is highly neurotropic, invading central and peripheral nervo

in the course of HIV disease. Consequently, many complications of HIV

infections result in neurological pain, and many commonly used HIV/AID

implicated in neurological pain.

Rarely, cerebrovascular events (e.g., thalamic stroke) occurring in hyperco

in central pain syndromes.

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• HIV encephalitis and atypical aseptic meningitis

• Opportunistic infections of the nervous system

• AIDS-related central nervous system neoplasms

• Sinusitis

• Tension

• Migraine

• Headache induced by medication (particularly AZT)

Toxoplasmosis and cryptococcal meningitis are the two most commonly e

infections of the central nervous system that cause headaches in patient

opportunistic infections of the central nervous system that can present 

patient include:

• CMV

• Herpes simplex virus and herpes zoster

• Progressive multifocal leukoencephalopathy (papovavirus)

• Candida albicans

• Mycobacterium tuberculosis

• Mycobacterium avium intracellulare (MAI)

• Neurosyphilis

One of the most common causes of headache without focal findings i

cancers of the central nervous system include central nervous system 

systemic lymphoma, and metastatic intracranial KS. These can pre

immunocompromised patient with HIV disease, with signs of increased i

or without focal neurological signs, as well as fever and meningismus.

More benign causes of headache in the patient with HIV disease includ

tension headache; migraine with or without aura; and unclassifiable or id

and colleagues in 1999 concluded that the progressing immunological d

patients seems to influence the pain processing of headache in different w

course of infection, the migraine frequency significantly decreased, whil

type headaches increased.27

Neuropathies

Neuropathic pain occurs in about 40% of AIDS patients.6 While several typ

thy have been described in patients with HIV/AIDS (see Table 4-4), the m

ropathy encountered is the predominantly sensory neuropathy (PSN) o

painful neuropathies in HIV/AIDS patients, however, can be caused by th

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• A variety of medical conditions (diabetic neuropathy, post-herpe

neuropathies)

• Nutritional deficiencies (B6

, B12)

• Toxins (alcohol)

• HIV-related therapies (e.g., ddI [didanosine], ddC [zalcitabine

Several antiretroviral drugs can cause painful toxic neuropathy, includin

• ddI (didanosine), ddC (zalcitabine), d4T (stavudine)

• Chemotherapy agents used to treat Kaposi’s sarcoma (vincristi

• A number of medications used in the treatment of PCP, MAI, 

infections10, 28, 29

Table 4-4: Neuropathies in Patients with HIV/AIDS

Predominantly Sensory

Neuropathy (PSN) of AIDS

IMMUNE-MEDIATED: • Inflammatory demyelin

(IDPs)

• Acute (Guillain-Barré syn

• Chronic (CIDP)

INFECTIOUS: • Cytomegalovirus polyradic

• Cytomegalovirus multiple 

• Herpes zoster

• Mycobacterial (MAI)

TOXIC/NUTRITIONAL: • Alcohol, Vitamin deficienc

• Antiretrovirals: ddI (didan

d4T (stavudine)

• Anti-virals: foscarnet

• PCP prophylaxis: dapsone

• Anti-bacterial: metronida

• Anti-mycobacterials: IN

ethionamide

• Anti-neoplastics: vincrist

OTHER MEDICAL CONDITIONS: • Diabetic neuropathy

• Post-herpetic neuralgia

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The predominant symptom in about 60% of patients is pain in the soles o

frequent and usually involves the dorsum of the feet and soles. Most patien

neuropathy (most commonly, absent or reduced ankle jerks and elevate

vibration sense); and, while the signs progress, the symptoms often remai

34 Although the patients’ complaints are predominantly sensory, electroph

strate both sensory and motor involvement. 

• Immune-mediated Neuropathies

Acute Guillain-Barré syndrome has been described in association with 

infection) but may occur at any time. Both acute and chronic infla

polyneuropathies are predominantly motor-related, and sensory a

Mononeuritis multiplex presents with sensory or motor deficits in the distr

cranial or peripheral nerves and may progress into a chronic infla

polyneuropathy.35, 36

• Infectious Neuropathies

Polyradiculopathies (associated with CMV infection) often present with 

a distinct course.37 The onset is usually subacute and the deficit initial

lumbar nerve roots. Both sensory and motor functions are involved, and the

ment of sphincters. Progression is relentless.35

Harrison and colleagues identified three variables related to herpes zo

healing; extension of lesion crusting; and the number of new vesicles.38 Ac

significance of baseline pain due to herpes zoster was a predictor of retur

Furthermore, the significance of pain at presentation and at one month w

of chronic pain.38

• Toxic/nutritional Neuropathies

Toxic and nutritional neuropathies in patients with HIV disease have been 

ing: 29, 33

• Alcohol

• Vitamin deficiencies (B6

, B12)

• Antiretroviral drugs: ddI (didanosine), ddC (zalcitabine), d4T (

• Anti-virals: foscarnet

• PCP prophylaxis: dapsone

• Anti-bacterial drugs: metronidazole

• Anti-mycobacterial drugs: INH, rifampin, ethionamide

• Anti-neoplastics: vincristine, vinblastine

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brachial plexopathy and acute demyelinating polyneuropathy

• The latent or asymptomatic phase (CD4+ T lymphocytes >500

acute and chronic demyelinating polyneuropathies

• The transition phase (200-500 CD4+ cells) is characterized by 

and mononeuritis multiplex

• The late phase of HIV disease (<200 CD4+ cells) is characteriz

sensory polyneuropathy, CMV polyneuropathy, mononeuritis m

opathy, mononeuropathies secondary to meningeal disease, a

toxic neuropathies

Rheumatological Pain Syndromes

In studies conducted by the Memorial Sloan-Kettering group, over 50

classified as rheumatologic in nature including various forms of arthriti

myopathy, myositis and myalgias.6

Arthritis and Arthropathies

HIV disease has been associated with several types of painful arthritis a

ing:39, 40, 41

• Non-specific arthralgias

• Reactive arthritis

• Psoriatic arthritis

• HIV-associated arthritis; and, rarely,

• Septic arthritis

The most frequently reported arthritis is a reactive arthritis or Reiter’s s

infection may present with a polyarthralgia in association with a mononu

is also a syndrome of acute severe and intermittent articular pain, often ref

painful articular syndrome, which commonly affects the large joints of t

ders. Psoriasis and psoriatic arthritis have been reported in patients w

arthritis is typically seen in conjunction with the skin changes of psoriasi

Sherrard suggest it may follow a disease course that proves refractory to c

HIV-associated arthritis also was described by Rynes, et al., which typically p

affecting the joints of the lower limbs.44 Septic arthritis has been repo

disease, including arthritis due to bacterial infections and infections with C

and Sporothrix schenckii.

40, 41

Myopathy and Myositis

Muscle pain is very common in patients with HIV disease. Several types of m

been described, including: 45, 46, 47, 48, 49, 50, 51

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Polymyositis may occur at any stage of HIV infection; it is thought to be 

infection of muscle cells40 and may present with a sub-acute onset of proxi

myalgia.45 Electromyographic evidence of myopathy, a raised serum crea

evidence of polymyositis are common in symptomatic patients. Drugs use

disease may also be associated with the development of myalgia26 and my

been particularly implicated; symptoms frequently improve following disc

therapy.10

OVERVIEW OF PAIN MANAGEMENT IN HIV/AIDS

■ Optimal management of pain requires a multidisciplinary approach. The 

shed light on etiology and contributing factors as well as establish a basel

the impact of therapy. Pain assessment tools for noting the intensity of pa

of medications are discussed below. Clear communication between prov

important to monitor the impact of any intervention (see Chapter 21: Pa

cation).

WHO Pain Ladder

Choice of analgesic agents should follow the World Health Organizati

(see Figure 4-1):

• Non-narcotic analgesics are the first step, for mild pain

• Weak opioids are the second step, for moderate pain

• Strong opioids are the third step, for severe pain

It is important that providers be comfortable with the use of one or two med

step (see Tables 4-6, 4-7 and 4-8), including management of side effects; 

or level, to another; drug interactions (see Chapter 27: Pharmacologic In

nificance); and dosing schedules.

Adjuvant treatments are important components of the pain ladder and h

ticularly in management of neuropathic pain.

Assessment Issues

Dame Cicely Saunders introduced the concept of total pain in the e

movement in the United Kingdom.53 This approach emphasizes the need t

cal, social, and spiritual aspects as well as physical aspects when appro

Therefore, a close collaboration of the entire health care team is optima

equately manage pain in the AIDS patient.

The initial step in pain management is a comprehensive assessment of 

professional in the AIDS setting must have a working knowledge of the etio

in AIDS, including an understanding of the different types of AIDS pain sy

as a familiarity with the parameters of appropriate pharmacologic treatm

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1

Non-opioid

Pain persistingor increasing

2

MODERATE

PAIN

Weak Opioid+ Non-opioid+/– Adjuvant

3

SEVERE

PAIN

Strong Opioid+/– Non-opioid+/– Adjuvant

Pain persistingor increasing

Figure 4-1: WHO Analgesic Ladder for Management of Pain in AIDS

Freedom from AIDS Pain

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process and indeed may disclose other treatable disorders56, 57

• A description of the qualitative features of the pain, its time cour

increase or decrease pain intensity

Pain intensity (current, average, at best, at worst) should be assessed to de

versus potent analgesics and as a means to serially evaluate the effectiven

Pain descriptors (e.g., burning, shooting, dull or sharp) will help determi

(somatic, nociceptive, visceral nociceptive, or neuropathic) and may sugge

response to various classes of traditional and adjuvant analgesics (nonst

drugs, opioids, antidepressants, anticonvulsants, oral local anesthetics, c

Additionally, detailed medical, neurological and psychosocial assessme

substance use or abuse) must be conducted. Where possible, family mem

interviewed and included in the pain management treatment plan. Duri

pain should be aggressively treated while pain complaints and psychosoc

ongoing process of re-evaluation.56

Pain Measurement/Assessment Tools

Pain assessment is continuous and needs to be repeated over the course 

available, simple and clinically validated pain self-report measures or to

ment easier and more reliable. There are essentially four aspects of pain 

require—and can be aided by—ongoing assessment and evaluation:

• Pain intensity (see Figures 4-2, 4-3 and 4-4)

• Pain relief (see Figure 4-1)

• Pain-related functional interference (e.g., mood state, general 

·• Monitoring of intervention effects.

Many pain assessment tools rely on visual analog testing. Three commo

intensity assessment tools, illustrated in Figure 4-2, are a simple descriptiv

10 numeric pain intensity scale, and a Visual Analog Scale (VAS) for pain 

scale, shown in Figure 4-3, can be used with children, patients who do not 

with the provider, or illiterate patients. The Memorial Pain Assessment 

used, since it is a helpful clinical tool that allows patients to report their pa

consists of visual analog scales that measure pain intensity, pain relief an

The Brief Pain Inventory (BPI) is another pain assessment tool (Figure 

used in cancer and AIDS pain research and clinical settings.62 The BPI h

ence Subscale that assesses pain’s interference in seven domains of qua

For more information or to download the BPI, go to the Pain Res

www.mdanderson.org/departments/prg.

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No pain Worst possible pain Mild pain Moderate pain Severe pain Very severe pain

0

No

pain

12345

Moderate

pain

6 7 8 9 10

Worst

possible

pain

0-10 Numeric Pain Intensity Scale1

Visual Analog Scale (VAS)2

Figure 4-2: Pain Intensity Scales

Simple Descriptive Pain Intensity Scale1

0-10 Numeric Pain Intensity Scale1

Visual Analog Scale (VAS) 2

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Figure 4-3: Pain Faces Scale 

Explain to the person that each face is for a person who feels happy because he has no pain (hurt) or sad because he has some o 

r a lo

pain. Face 0 is very happy because he doesn’t hurt at all. Face 2 hurts just a little bit. Face 4 hurts a little more. Face 6 hurts even moF

10 h

t

h 

i

i

lth

h 

d

’t h

t

b

i

t

f

l thi

b

d

A

k th

t

h

th

f

th

t b

Wong-Baker FACES Pain Rating Scale

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Worst mood Best mood

4

Mood Scale

Least

possible

i

Worst

possible

i

1

Pain Scale

2

No relief

of pain

Moderate

Strong

Just noticeable

No pain

Excruciating Severe

Mild

Weak

Comp

relief 

i

3

Relief Scale

Figure 4-4: Memorial Pain Assessment Card

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Source: Charles S. Cleeland. Pain Research Group, M.D. Anderson Cancer Center.

Copyright 1991. Reprinted with permission.

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Individuals served have the right to appropriate assessment and 

management of pain

• Pain must be assessed in all individuals

Some key concepts of the JCAHO standards are listed in Table 4-5. The 

available at www.jcaho.org/standard/pm_hap.html. The pain assessme

scribed above can help organizations and practitioners comply with the

principles of pain assessment and management described in this chapte

Other sources of help in meeting the pain standards include Building a

ment to Pain Management: The Mayday Resource Manual for Improvem

lation of resource material to promote institutional support of pain mana

resource tools are available on a disc. Available from Wisconsin Cancer Pa

Sciences Center, Univ. of Wisconsin Medical School, 1300 University Avenu

262-0278, FAX 608-265-4014; E-mail aacpi@aacpi.org or www.aacpi.org.6

Table 4-5: JCAHO Pain Standards

• Recognize the right of patients to appropriate assessment and 

• Assess the existence and, if so, the nature and intensity of pain 

• Record the results of the assessment in a way that facilitates re

and follow-up.

• Determine and assure staff competency in pain assessment an

address pain assessment and management in the orientation o

• Establish policies and procedures which support the appropria

ordering of effective pain medications.

• Educate patients and their families about effective pain manag

patient needs for symptom management in the discharge plan

Sources: JCAHO Pain Standards. www.jcaho.org/standard/pm_hap.html. Also, HRSA. w

Multimodal Approach

Federal guidelines developed by the Agency for Health Care Policy and R

management of cancer pain also address the issue of pain managemen

state, the principles of pain assessment and treatment in the patient with 

mentally different from those in the patient with cancer and should be f

HIV/AIDS.58 In contrast to pain in cancer, pain in HIV disease more comm

lying treatable cause.10

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PHARMACOLOGIC INTERVENTIONS FOR PAIN

■ The World Health Organization has devised guidelines for analgesic m

which the AHCPR has endorsed for the management of pain related to c

guidelines, also known widely as the WHO Analgesic Ladder (Figure 4-1), h

This approach advocates selection of analgesics based on the severity of 

pain (i.e., neuropathic vs. non-neuropathic pain). For pain that is mild 

non-opioid analgesics such as NSAIDs (non-steroidal anti-inflammatory d

are recommended. For pain that is persistent and moderate to severe in in

of increasing potency (such as morphine) should be utilized.

Adjuvant agents, such as laxatives and psychostimulants, are useful in pre

opioid side effects such as constipation or sedation respectively. Adjuvan

the antidepressant analgesics, are suggested for considered use, along wi

all stages of the analgesic ladder (mild, moderate or severe pain), but h

clinical application in the management of neuropathic pain.

The WHO approach, while not yet validated in AIDS, has been recomm

clinical authorities in the fields of pain management and AIDS.8, 10, 12, 17, 2

reports have appeared in recent literature describing successful applicat

Ladder principles to pain management in AIDS, with particular emphasi

67, 68, 69, 70, 71

Non-Opioid Analgesics

The non-opioid analgesics are prescribed principally for mild-to-moder

analgesic effects of opioid analgesics in the treatment of severe pain (see Ta

in patients with AIDS must be accompanied by heightened awareness of to

NSAIDs are highly protein-bound, and the free fraction of available drug is i

who are cachectic, wasted and hypoalbuminic, often resulting in toxicitie

tients with AIDS are frequently hypovolemic, on concurrent nephrotoxic dr

nephropathy, and so are at increased risk for renal toxicity related to NSAI

of the NSAIDs may also interfere with early detection of infection in patien

Major adverse effects associated with NSAIDs include the following:

• Gastric ulceration

• Renal failure

• Hepatic dysfunction

• Bleeding

The nonacetylated salicylates, such as salsalate, sodium salicylate, and c

late, theoretically have fewer gastrointestinal (GI) side effects and mig

where GI distress is an issue. Prophylaxis for NSAID-associated GI sympto

drugs (cimetidine 300 mg tid-qid or ranitidine 150mg bid); misoprostal 200 

qd; or an antacid.

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Table 4-6: Oral Analgesics for Mild to Moderate Pain in HIV/AIDS Analgesic Starting Duration Plasma (by class) Dose (MG) (HRS) Half-Life (HRS) COMMENTS Acetaminophen 650 4-6 4-6 May be hepatotoxic if exceeds reco

Nonsteroidal (NSAIDs) Aspirin 650 4-6 4-6 Standard of comparison among no

analgesics. Ibuprofen 400-600 — — Like aspirin, can inhibit platelet f

Choline magnesium trisalicylate 700-1500 — — Essentially no hematologic or gast

side effects. Weaker opioids Codeine 32-65 3-4 — Metabolized to morphine, often us

cough in patients at risk of pulmon

Oxycodone 5-10 3-4 — Available as a single agent and in c

with aspirin or acetominophen

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since many (e.g., ketoprofen, feroprofen, naproxen and carpofen) are h

function for clearance. The risk of renal dysfunction is greatest in pat

preexisting renal impairment, hypovolemia, concomitant therapy with ne

failure. Prostaglandins modulate vascular tone and their inhibition by the 

tension as well as interference with the pharmacologic control of hyper

Caution should also be used with patients receiving B-adrenergic antago

tensin-converting enzyme inhibitors. Several studies have suggested that 

excretion of several NSAIDs, including indomethacin and sulindac. In p

function, these drugs should be used with caution. NSAIDs, with the excep

salicylates (e.g., sodium salicylate, cholinemagnesium trisalicylate), pro

aggregation (usually reversible, but irreversible with aspirin). NSAIDs sho

caution, or avoided, in patients who are thrombocytopenic or who have c

Opioid Analgesics

Opioid analgesics are the mainstay of pharmacotherapy for moderate-

the patient with HIV disease (see Table 4-7).

Principles of Opioid Pharmacotherapy

It is important that the provider have a systematic approach to the use of 

the-clock pain coverage. (Other than as backup for breakthrough pain, PR

used for treatment of chronic pain.) If a patient has no prior experience wi

may be achieved with weaker opiates such as codeine or hydrocodone. M

a non-naive patient may require starting with morphine, hydromorphone

a patient needs more than two or three pills every four hours to control 

switch to a stronger agent.

In order to switch from one opiate to another, use a simple calculation to 

tency of regimes: convert both the current medication and the new med

equivalents (see Table 4-7). Then, estimate the number of oral morphi

control pain for a 24-hour period based on the current regimen. A dosing s

provide the same number of morphine equivalents can then be determine

logical properties of the new drug choice.

The optimal regimen is one that will keep the patient comfortable and ma

life. The regimen should prevent breakthrough pain from occurring, an

genic complications and cost. Provision for breakthrough pain or incide

lated) pain should be provided, usually 50% to 100% of the around-the-cloc

the breakthrough doses should be maintained so that appropriate increas

regimen can be calculated. Increases in the around-the-clock dose should

than 25% of the base dose.

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Table 4-7: Opioid Analgesics for Moderate to Severe Pain in AIDS **Oral Anal- Equi- Morphine gesic Plasma Analgesic Equival- Onset Duration Half-Llife Analgesic Route Dose (MG) ents (MG) (HRS) (HRS) (HRS) COMMENTS Morphine PO 30-60* 30-60 1-11

/2 4-6 2-3 Standard of comparison for the narcotic an

IM, 10 10 1

/2-1 3-6

IV, SC

Morphine PO 90-120 90-120 1-11

/2 8-12 — Now available in long-acting sustained rel

(sustained release)

Oxycodone PO 20-30 30-45 1 3-6 2-3 In combination with aspirin or acetaminop

considered a weaker opioid, as a single age

Oxycodone PO 20-40 30-60 1 8-12 2-3 arable to the strong opioids, like morphin

(sustained release) immediate release and sustained release p

Hydromorphone PO 7.5 30-40 1

/2 - 1 3-4 2-3 Short half-life; ideal for elderly patients. C

IM, IV 1.5 15-20 1

/4 -1

/2 3-4 2-3 suppository and injectable forms.

Methadone PO 20 80 1

/2 - 1 4-8 15-30 Long half-life; tends to accumulate with in

IM, IV 10 80 1

/2 - 1 — 15-30 requires careful titration. Good oral poten

Levorphanol PO 4 30-60 1

/2 - 11

/2 3-6 12-16 Long half-life; requires careful dose titrat

IM 2 30-60 1

/2 - 1 12-16 week. Note that analgesic duration is only 

Meperidine PO 300 30-60 1

/2 - 11

/2 3-6 3-4 Active toxic metabolite, or meperidine, ten

IM 75 30

60 1

/

1 3

4 3

4 

l

(

l

h

lf

lif

i

3

4 h

)

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managing chronic pain in AIDS. Oxycodone (in combination with either a

hydrocodone, and codeine are the so-called weaker opioid analgesics and a

two of the WHO ladder for mild-to-moderate intensity pain. More severe p

morphine or another of the stronger opioid analgesics, such as hydr

levorphanol, or fentanyl. Oxycodone, as a single agent without aspirin or ac

in immediate and sustained-release forms and is considered a stronger op

Routes of Administration

The oral route has often been described as the preferred route of administ

from the perspectives of convenience and cost. However, the transderm

has gained rapid acceptance by clinicians and patients since patients a

medications.

Patients with HIV infection are burdened with taking anywhere from 20 t

per day and often need to follow complicated regimens where medicat

empty stomach, etc. In a study on patient-related barriers to pain managem

vast majority of AIDS patients endorsed a preference to utilize a pain int

minimal number of additional pills (e.g., sustained-release preparations o

tions that did not require taking pills at all (e.g., transdermal opioid syste

Immediate-release oral morphine or hydromorphone drug preparations 

to four hours. Longer-acting, sustained-release oral morphine preparatio

rations are available that provide up to 8 to 12 hours or more of analgesia, 

daily doses required to control persistent pain. Rescue doses of immed

opioid are often necessary to supplement the use of sustained-release mo

ticularly during periods of titration or pain escalation.

The transdermal fentanyl patch system (Duragesic) has useful applicati

severe pain in AIDS.67, 69 Each transdermal fentanyl patch contains a 48- t

nyl, which is absorbed from a depot in the skin. Levels in the plasma rise 

after patch placement so dosage forms are available. As with sustained-r

tions, all patients should be provided with oral or parenteral rapidly actin

manage breakthrough pain. The transdermal system is convenient and ca

of pain associated with repeated oral dosing of analgesics. In AIDS patien

the absorption of transdermal fentanyl could be increased with fever, resu

levels and shorter duration of analgesia from the patch.

It is important to note that opioids can be administered through a variety of rout

intravenous, subcutaneous, intraspinal and even intraventricular.69 There 

vantages, as well as indications for use of these various routes. Further discus

routes appears in the Agency for Health Care Policy and Research Clinic

Management of Cancer Pain, available free of charge by calling 1-800-4-C

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ylphenidate, which are all prescribed in divided doses in early morning 

psychostimulants can improve depressed mood and enhance analgesia.

Delirium, either agitated or somnolent, can also occur while a patient is 

lirium is usually accompanied by attentional deficits, disorientation, and 

(visual hallucinations and more commonly illusions). Myoclonus and aste

of neurotoxicity that accompany the course of opioid-induced delirium. Me

administered chronically in patients with renal impairment can lead to a 

lation of the neuro excitatory metabolite normeperidine.77

Three strategies may alleviate opioid-induced delirium:

• Lowering the dose of the opioid drug presently in use

• Changing to a different opioid

• Treating the delirium with low doses of high potency neurolep

The strategy of using high potency neuroleptics is especially useful for 

sensorium.78 For agitated states, intravenous haloperidol in doses starting 

is useful, with rapid escalation of dose if no effect is noted.

Gastrointestinal side effects of opioid analgesics are common. The most p

iting, and constipation.60 Concomitant therapy with prochlorperazine for n

tive. Since not all opioid analgesics are tolerated in the same manner, swit

can be helpful if an anti-emetic regimen fails to control nausea. Constip

effects on gut receptors is a frequently encountered problem that tends to b

use of senna derivatives. A careful review of medications is imperative, si

such as the tricyclic antidepressants can worsen opioid-induced constip

struction.

Respiratory depression is a worrisome but rare side effect of the opioid an

culties can almost always be avoided by adhering to two general principl

• Start opioid analgesics in low doses in opioid-naive patients

• Be cognizant of relative potencies when switching opioid anal

routes of administration, or both

Adjuvant Analgesics

Adjuvant analgesics are the third class of medications frequently presc

chronic pain and have important applications in the management of pai

Adjuvant analgesic drugs are used to enhance the analgesic efficacy of 

symptoms that exacerbate pain, and provide independent analgesia. The

of the WHO analgesic ladder. Commonly used adjuvant drugs include antid

psychostimulants, anticonvulsants, corticosteroids and oral anesthetics

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Nortriptyline 10-150 

Imipramine 15.5-150 

Desipramine 10-150 

Clomipramine 10-150 

Doxepin 12-150 

HETEROCYCLIC AND NON-CYCLIC ANTIDEPRESSANTS

Trazodone 125-300 

Maprotiline 50-300 

SEROTONIN REUPTAKE INHIBITORS

Fluoxetine 20-80 

Paroxetine 10-60 

Sertraline 50-200 

NEWER AGENTS

Nefazodone 100-500 

Venlafaxine 75-300 

PSYCHOSTIMULANTS

Methylphenidate 2.5-20 bid 

Dextroamphetamine 2.5-20 bid 

Pemoline 13.75-75 bid 

Modafinil 100-400 

PHENOTHIAZINES

Fluphenazine 1-3 

Methotrimeprazine 10-20 q6h 

BUTYROPHENONES

Haloperidol 1-3 tid 

Pimozide 2-6 bid 

ANTIHISTAMINES

Hydroxyzine 50 q4h -q6h 

ANTICONVULSANTS

Carbamazepine 200 tid - 400 tid 

Phenytoin 300-400 

Valproate 500 tid - 1000 tid 

Gabapentin 300 tid - 1000 tid 

ORAL LOCAL ANESTHETICS

Mexiletine 600-900 

CORTICOSTEROIDS

Dexamethasone 4-16 

BENZODIAZEPINES

Alprazolam 0.25-2.0 tid 

Clonazepam 0.5-4 bid 

PO=per oral; IM=intramuscular; IV=intravenous; q6h=every 6 hours

bid = twice a day, tid = three times a day, qid = four times a day

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or enhancement of opioid analgesia, 85, 86, 87 and direct analgesic effects

The leading hypothesis suggests that both serotonergic and noradrenergi

pressants are important, and that variations among individuals in pain (a

neurotransmitter systems) are an important variable.54 Other possible m

sant analgesic activity that have been proposed include adrenergic and s

adenosinergic effects, anti-histaminic effects, and direct neuronal effe

paroxysmal neuronal discharge and decreasing sensitivity of adrenergic r

sprouts.86, 89, 90, 91

There is substantial evidence that the tricyclic antidepressants in par

useful in the management of chronic neuropathic and non-neuropathic 

tyline is the tricyclic antidepressant most studied and has been proven e

a large number of clinical trials addressing a wide variety of chronic p

neuropathy, cancer pain, fibromyalgia and others.54, 80, 81, 92, 93, 94 Other 

shown to have efficacy as analgesics include imipramine, desip

clomipramine,100 and doxepin.55, 95, 96, 97, 98, 99, 101

The heterocyclic and non-cyclic antidepressant drugs may be useful a

chronic pain syndromes.54, 81, 88, 96, 97, 102, 103, 104, 105, 106, 107 These drugs inclu

maprotiline and the newer serotonin-specific reuptake inhibitors (SSRIs), 

Fluoxetine, a potent antidepressant with specific serotonin reuptake inh

shown to have analgesic properties in experimental animal pain models b

effects in a clinical trial for neuropathy.97, 106, 107 Several case reports su

useful adjuvant analgesic in the management of headache and fibrositis

Paroxetine, a newer SSRI, is the first antidepressant of this class show

analgesic in a controlled trial for the treatment of diabetic neuropathy.

such as sertraline, venlafaxine, and nefazodone may also eventually prov

adjuvant analgesics. For instance, nefazodone has been demonstrated to 

sics in an animal model.110

Given the diversity of clinical syndromes in which the antidepressants ha

be analgesic, trials of these drugs can be justified in the treatment of virtu

pain.111 The established benefit of several of the antidepressants in patien

however, suggests these drugs may be particularly useful with cancer and 

underlying neuropathic component to the pain(s) often exists.96, 97, 111 Whi

efficacy of these drugs in HIV-related painful neuropathies have not yet b

are widely applied clinically using the model of diabetic and post-herpet

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neuropathic as well as non-neuropathic pain syndromes.84, 87 The dose a

analgesia for antidepressants when used as analgesics appears to be sim

pressants.

There is compelling evidence that the therapeutic analgesic effects of am

with serum levels, as are the antidepressant effects, and that analgesic trea

serum levels.93, 97 A high dose regimen of up to 150 mg of amitriptyline or 

proper analgesic dose for paroxetine is likely in the 40 to 60 mg range, wit

utilizing a fixed dose of 40 mg.96

Anecdotal evidence suggests that in cases of depression or pain, the debili

and AIDS patients) often respond to lower doses of antidepressant than a

physically healthy, probably because of impaired metabolism of these dru

of onset of analgesia, a biphasic process appears to occur. Immediate or ea

within hours or days, and probably mediated through inhibition of synap

mines. In addition, there are later, longer analgesic effects that peak over 

that are probably due to receptor effects of the antidepressants.92, 93, 97

Neuroleptics and Benzodiazepines

Neuroleptic drugs, such as methotrimeprazine, fluphenazine, haloperido

role as adjuvant analgesics101, 112, 113, 114 in AIDS patients with pain; however, 

against what appears to be an increased sensitivity to the extrapyramidal 

in AIDS patients with neurological complications.115 Anxiolytics, such as alp

may also be useful as adjuvant analgesics, particularly in the managemen

117, 118

Psychostimulants

Psychostimulants such as dextroamphetamine, methylphenidate, pemo

useful antidepressants in patients with HIV infection or AIDS who are c

Psychostimulants also enhance the analgesic effects of the opioid drugs,7

sedation secondary to narcotic analgesics, and are potent adjuvant analge

strated that a regimen of 10 mg methylphenidate with breakfast and 5 m

decreased sedation and potentiated the effect of narcotics in patients w

ylphenidate has also been demonstrated to improve patient functioning 

chological tests, including tests of memory, speed and concentration, in p

ous infusions of opioids for cancer pain.119 Dextroamphetamine has been 

analgesic effects when used with morphine in postoperative pain.120 

psychostimulants stimulate appetite, promote a sense of well being, and d

ness and fatigue in cancer patients.

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• Mild sympathomimetic effects

• The fact that it comes in a chewable tablet form that can be abs

mucosa and thus can be used by AIDS patients who have difficul

intestinal obstruction

Clinically, pemoline is as effective as methylphenidate or dextroamphet

depressive symptoms and in countering the sedating effects of opioid ana

ies of pemoline’s capacity to potentiate the analgesic properties of opioids

with caution in patients with liver impairment, and liver function tests sho

cally with longer-term treatment. The Food and Drug Administration (

pemoline is prescribed, patients sign an informed consent document that 

toxicities of pemoline.

Modafinil, a novel psychostimulant that has shown efficacy in treating exc

associated with narcolepsy, has recently demonstrated potential for the tre

fatigue.121 Although modafinil needs further study, it appears to be a prom

psychostimulants in patients who cannot tolerate or have contraindic

stimulants. Modafinil has minimal cardiovascular effects, does not cause 

has a low abuse potential, and does not require a special triplicate prescr

Anticonvulsant Drugs

Selected anticonvulsant drugs appear to be analgesic for the lancinating 

terize diverse types of neuropathic pain.111 Clinical experience also suppo

in patients with paroxysmal neuropathic pains that may not be lancinating 

in those with neuropathic pains characterized solely by continuous dys

practitioners prefer to begin with carbamazepine because of the extraord

observed in trigeminal neuralgia, this drug must be used cautiously in AIDS 

topenia, those at risk for marrow failure, and those whose blood counts m

mine disease status. If carbamazepine is used, a complete blood count shou

start of therapy, after two and four weeks, and then every three to four mon

count below 4000 is usually considered to be a contraindication to treatm

than 3000 or an absolute neutrophil count of less than 1500 during thera

tinuation of the drug. Other anticonvulsant drugs may be useful for man

AIDS patients, including phenytoin, clonazepam, valproate and gabapen

Several newer anticonvulsants have been used in the treatment of neur

with patients who have reflex sympathetic dystrophy. These drugs include 

tiagabine, and felbamate. Of these newer anticonvulsants, experience has 

gabapentin, now being widely used by pain specialists to treat neuropat

Gabapentin has a relatively high degree of safety, with no known drug-dr

of hepatic metabolism.111 Treatment with gabapentin is usually initiated a

then gradually increased to a dose range of 900-3200 mg/day in three div

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all quality of life. Adverse effects include neuropsychiatric syndromes, gas

and immunosuppression.

Baclofen

Baclofen is a GABA-agonist that has proven efficacy in the treatment of tr

this basis, a trial of this drug is commonly employed in the management o

pains of any type. Dosing is generally undertaken in a manner similar to 

primary indication, spasticity. A starting dose of 5 mg two to three times per 

to 30-90 mg per day, and sometimes higher if side effects do not occur. T

effects are sedation and confusion.

Oral Local Anesthetics

Local anesthetic drugs may be useful in the management of neuropath

either continuous or lancinating dysesthesias. Controlled trials have dem

tocainide and mexiletine and clinical evidence suggests similar effects fr

taneous lidocaine.123, 124, 125, 126 It is reasonable to undertake a trial with 

patients with continuous dysesthesias who fail to respond adequately to, o

tricyclic antidepressants, and with patients with lancinating pains refract

sant drugs and baclofen.

Mexiletine is preferred in the U.S.111 Paice and colleagues in 2000 stud

order to test the efficacy of topical capsaicin in the management of HIV-a

suggest that capsaicin was ineffective in relieving pain with HIV-associat

ripheral neuropathy (DSPN). However capsaicin has been shown to be 

associated with other neuropathic pain syndromes.127

Drug Interactions: Analgesics and Anti-HIV Drug Therap

Many of the available anti-HIV drugs have the potential to interact wi

scribed for pain, depression, anxiety or other medical conditions. These 

dangerous, resulting in drug toxicities due to elevated levels of medicatio

due to lower drug levels in the serum. Opioid analgesics can interact w

therapies and these interactions should be kept in mind when prescribin

The protease inhibitor ritonavir (Norvir) can increase the levels of sever

codeine, hydrocodone, oxycodone, methadone, and fentanyl. Patients o

prescribed meperidine or propoxyphene because of increased risk of seriou

and anticonvulsant analgesics can also interact primarily with ritonavir. R

serum levels of bupropion (Wellbutrin, Zyban), fluoxetine, trazodone, and 

increased drug toxicities (e.g., seizures with bupropion). Both ritonavir 

may increase levels of anticonvulsants such as phenobarbital, phenyt

clonazepam.

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Table 4-9: Non-pharmacologic Interventions

PHYSICAL THERAPIES

Cutaneous stimulation (superficial heat, cold, and 

Transcutaneous electrical nerve stimulation (

Acupuncture

Bed rest

PSYCHOLOGICAL THERAPIES

Hypnosis

Relaxation, imagery, biofeedback, distraction, and 

Patient education

NEUROSURGICAL PROCEDURES

Nerve blocks

Cordotomy

Physical interventions range from bed rest and simple exercise programs 

packs or heat to affected sites. Other non-pharmacologic interventions 

massage, the application of ultrasound and transcutaneous electrical n

Increasing numbers of AIDS patients have resorted to acupuncture to rel

dotal reports of efficacy.

Several psychological interventions have demonstrated potential efficacy 

pain, including hypnosis, relaxation and distraction techniques such as 

and cognitive behavioral techniques.

See Tables 4-10 and 4-11 for sample relaxation and distraction exercises

Where non-pharmacologic and standard pharmacologic treatments f

neurosurgical procedures (such as nerve block, cordotomy, and epidural 

additional options available to the patient who appreciates the risks 

procedures.

Chpt 04 1-17-03.p65 1115
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y gy, 

You may wish to try abdominal breathing.

4. To help you focus on your breathing and breathe slowly and rhyt

you say silently to yourself, “in, two, three”; (b) breathe out as y

“out, two, three.” or each time you breathe out, say silently t

“peace” or “relax.”

5. Do steps 1 through 4 only once or repeat steps 3 and 4 for up to 

6. End with a slow deep breath. As you breathe out say to yourself

Source: Adapted from McCaffery M, Beebe A. Pain: Clinical Manual for Nursing Practic

Table 4-11: Peaceful Distraction

Something may have happened to you a while ago that brought you peace 

able to draw on that past experience to bring you peace or comfort now. Th

1. Can you remember any situation, even when you were a child, 

peaceful, secure, hopeful or comfortable?

2. Have you ever daydreamed about something peaceful? What w

3. Do you get a dreamy feeling when you listen to music? Do you h

4. Do you have any favorite poetry that you find uplifting or reassu

5. Have you ever been religiously active? Do you have favorite rea

Even if you haven’t heard or thought of them for many years, ch

ences may still be very soothing.

Additional points: Very likely some of the things you think of in answer 

recorded for you, such as your favorite music or a prayer. Then, you can li

you wish. Or, if your memory is strong, you may simply close your eyes and 

Source: Adapted from McCaffery M, Beebe A. Pain: Clinical Manual for Nursing Practic

BARRIERS TO PAIN MANAGEMENT IN HIV/AIDS

■ A number of different factors have been identified as potential influ

undertreatment of pain in AIDS, including patient-, clinician-, and he

barriers.3, 74, 128, 129 Sociodemographic factors that have been reporte

undertreatment of pain in AIDS patients include gender, education level, an

Women, less educated patients, minorities, and patients who reported inje

risk transmission factor are significantly more likely to receive inadequ

HIV-related pain.

In a 1999 survey of approximately 500 AIDS care providers, clinicians (

nurses) rated the barriers to AIDS pain management they perceived to be 

care of AIDS patients (see Table 4-12).129

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3. Lack of access to pain specialists 

4. Concern regarding drug addiction and/or abuse 

5. Lack of psychological support/drug treatment services 

6. Patient reluctance to report pain 

7. Patient reluctance to take opioids 

Source: Breitbart W, Kaim M, Rosenfeld B. Clinicians’ perceptions of barriers to pain manage

Manage 18:203-12, 1999.

Managing pain in AIDS patients with a history of substance use is a 

problem that HIV providers will face with increasing frequency. Table 4-13 

tions for pain management in substance users. For more information, see C

Problems

Table 4-13: An Approach to Pain Management in Substance U

1. Substance users with HIV disease deserve pain control; we ha

pain and suffering in all of our patients.

2. Accept and respect the report of pain.

3. Be careful about the label substance abuse; distinguish betwee

dependence and addiction (psychological dependence or drug 

4. Not all substance users are the same; distinguish between ac

methadone maintenance, and those in recovery.

5. Individualize pain treatment.

6. Utilize the principles of pain management outlined for all patie

pain (WHO Ladder).

7. Set clear goals and conditions for opioid therapy: set limits, rec

iors, make consequences clear, use written contracts and esta

8. Use a multidimensional approach: pharmacologic and nonphar

attention to psychosocial issues, team approach.

CONCLUSION

■ Pain in AIDS, even in this era of protease inhibitors and decreased AIDS 

significant problem contributing greatly to psychological and function

adequately treated and so must be a focus of palliative care of the person 

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1. Breitbart W. Pharmacotherapy of pain in AIDS. In Wormser, ed. A Clinical Guide 

Philadelphia: Lippencott-Raven Publishers, 359-78, 1996.

2. Breitbart W. Pain in AIDS. In Jensen J, Turner J, Wiesenfeld-Hallin Z, eds. Proce

Congress on Pain, Progress in Pain Research and Management, Vol. 8. Seattle: 

3. Breitbart W, Rosenfeld B, Passik S, et al. The undertreatment of pain in ambulatory 

45, 1996.

4. Breitbart W, McDonald MV, Rosenfeld B, et al. Pain in ambulatory AIDS patients I: P

medical correlates. Pain 68:315-21, 1996.

5. Frich LM, Borgbjerg FM. Pain and pain treatment in AIDS patients: A longitudina

Manage 19:339-47, 2000.

6. Hewitt D, McDonald M, Portenoy R, et al. Pain syndromes and etiologies in ambula

70:117-23, 1997.

7. Larue F, Fontaine A, Colleau S. Underestimation and undertreatment of pain in HI

Br Med J 314:23-8, 1997.

8. Lebovits AK, Lefkowitz M, McCarthy D, et al. The prevalence and management of 

A review of 134 cases. Clin J Pain 5:245-8, 1989.

9. McCormack JP, Li R, Zarowny D, Singer J. Inadequate treatment of pain in ambula

9:247-83, 1993.

10. O’Neill WM, Sherrard JS. Pain in human immunodeficiency virus disease: A review. 

11. Rosenfeld B, Breitbart W, McDonald MV, et al. Pain in ambulatory AIDS patients II: 

psychological functioning and quality of life. Pain 68:323-8, 1996.

12. Singer EJ, Zorilla C, Fahy-Chandon B, et al. Painful symptoms reported for ambula

longitudinal study. Pain 54:15-9, 1993.

13. Vogel D, Rosenfeld B, Breitbart W, et al. Symptom prevalence, characteristics, and d

J Pain Symptom Manage 18:253-62, 1999.

14. Doyle D, Hanks GWC, MacDonald N, eds. Oxford Textbook of Palliative Medicine, 

University Press, 1998.

15. Breitbart W, Passik S, Bronaugh T, et al. Pain in the ambulatory AIDS patient: prevale

(Abstract). 38th Annual Meeting, Academy of Psychosomatic Medicine, October 17

16. Larue F, Brasseur L, Musseault P, et al. Pain and HIV infection: A French nationa

Care 10:95, 1994.

17. Schofferman J, Brody R. Pain in far advanced AIDS. In KM Foley, et al., eds. Adv

Therapy, Vol. 16. New York: Raven Press, Ltd., 379-86, 1990.

18. Penfold R, Clark AJM. Pain syndromes in HIV infection. Can J Anaesth 39:724-30

19. Breitbart W, McDonald M, Rosenfeld B, Passik S, Kalle J, Thaler H, Portenoy H. Pain 

(Abstract). Proceedings of the 14th Annual Meeting of the American Pain Society

20. Marte C, Allen M. HIV-related gynecologic conditions: Overlooked complications. F

Research and Counseling 7:1-3, 1991.

21. Strafford M, Cahill C, Schwartz T, et al. Recognition and treatment of pain in pedia

(Abstract). J Pain Symptom Manage 6:146,1991.

22. Barone SE, Gunold BS, Nealson TF, et al. Abdominal pain in patients with acquired 

Ann Surg 204:619-23,1986.

Chpt 04 1-17-03.p65 1118
U.S. Department of Health and Human Services • Health Resources and Services Administration 

, , , y () 

AIDS and AIDS-related complex. N Engl J Med 317:192-7, 1987.

27. Evers S, Wibbeke B, Reichelt D, et al. The impact of HIV on primary headache. Un

retrospective, cross-sectional, and prospective analyses. Pain 85:191-200, 2000.

28. Lefkowitz M, Breitbart W. Chronic pain and AIDS. In RH Wiener, ed. Innovation

36:2-3, 18, 1992.

29. Griffin JW, Wesselingh SL, Griffin DE, Glass JD, McArthur JC. Peripheral nerve diso

Similarities and contrasts with CNS disorders, in RW Price, SW Perry, eds. HIV, AID

Raven Press Ltd, 159-82, 1994.

30. Cornblath DR, McArthur IC. Predominantly sensory neuropathy in patients with AI

Neurology 38:794-6, 1988.

31. Moss V. Palliative care in advanced HIV disease: Presentation, problems and palliat

32. Singh S, Fermie P, Peters W. Symptom control for individuals with advanced HIV in

residential unit: Which symptoms need palliating? VIII International Conference o

Congress, Amsterdam, The Netherlands (Abstract POD 5248), July 19-24, 1992.

33. Simpson DM, Wolfe DE. Neuromuscular complications of HIV infection and its treat

34. Lange DJ, Britton CB, Younger DS, Hays AP. The neuromuscular manifestations of 

virus infections. Arch Neurol 45:1084-8, 1988.

35. Parry GJ. Peripheral neuropathies associated with human immunodeficiency viru

(suppl) 349-553, 1988.

36. Dalakas MC, Pezeshkpour GA. Neuromuscular diseases associated with human imm

Ann Neurl 23 (suppl) S38-48, 1988.

37. Fuller GN, Jacobs JM, Guiloff RJ. Association of painful peripheral neuropathy in A

infection. Lancet 334:937-41, 1989.

38. Harrison R, Soong S, Weiss H, et al. A mixed model for factors predictive of pain in A

zoster. J Pain Symptom Manage 17:410-17, 1999.

39. Espinoza LR, et al. Rheumatic manifestations associated with Human Immunodefi

Arthritis and Rheumatism 32:12;1615-22, 1989.

40. Kaye BR. Rheumatologic manifestations of infection with human immunodeficien

Ann Intern Med 111:158-67, 1989.

41. Forster SM, Seifert MH, Keat AC, et al. Inflammatory joint disease and human imm

Br Med J 296:1625-7, 1988.

42. Winchester R, Bernstein DH, Fischer HD, Enlow R, Solomon G. The co-occurrence 

acquired immunodeficiency. Ann Intern Med 106:19-26, 1987.

43. Johnson TM, Duvic M, Rapini RP, Rios A. AIDS exacerbates psoriasis. New Engl J M

44. Rynes RI, Goldenberg DL, DiGiacomo R, et al. Acquired immunodeficiency syndrom

Am J Med 84:810-16, 1988.

45. Dalakas MC, Pezeshkpour GH, Gravell M, Sever JL. Polymyositis associated with AID

JAMA 256:2381-3, 1986.

46. Gorand DA, Henry K, Guiloff RJ. Necrotizing myopathy and zidovudine. Lancet 33

47. Panegyres PK, Ran N, Kakulas BA, Armstrong JA, Hollingsworth P. Necrotizing myo

Lancet 331:1050-1, 1988.

48. Watts RA, Hoffbrand BI, Paton DF, Davie JC. Pyomyositis associated with human im

infection. Br Med J 194:1524-5, 1987.

49. Nelson MR, Daniels D, Dean R, Barton S, Gazzard BG. Staphylococcus aureus psoas 

Int J STD AIDS 3:294, 1992.

Chpt 04 1-17-03.p65 1119
120 U.S. Department of Health and Human Services • Health Resources and Services Adm

zidovudine therapy of AIDS and ARC. New Engl J Med 318:708, 1988.

53. Saunders C. The Management of Terminal Illness. London: Edward Arnold, 196

54. Watson CP, Chipman M, Reed K, Evans RJ, Birkett N. Amitriptyline versus maprotili

A randomized double blind, cross-over trial. Pain 48:29-36, 1992.

55. Kishore-Kumar R, Max MB, Scafer SC, et al. Desipramine relieves post-herpetic neur

Clinical Pharmacological Therapy 47:305-12, 1990.

56. Portenoy R, Foley KM. Management of cancer pain. In JC Holland, JH Rowland, e

Psychooncology. New York: Oxford University Press, 369-82, 1989.

57. Foley KM. The treatment of cancer pain. N Engl J Med 313:84-95, 1985.

58. Jacox A, Carr D, Payne R, et al. Clinical Practice Guideline Number 9: Manag

Department of Health and Human Services, Public Health Service, Agency for Heal

AHCPR Publication #94-0592:139-41, 1994.

59. World Health Organization. Cancer Pain Relief. Geneva: World Health Organizatio

60. Portenoy RK. Pharmacologic approaches to the control of cancer pain. J Psychoso

61. Fishman B, Pasternak S, Wallenstein SL, et al. The Memorial Pain Assessment Car

evaluation of cancer pain. Cancer 60:1151-8, 1987.

62. Daut RL, Cleeland CS, Flanery RC. Development of the Wisconsin Brief Pain Quest

cancer and other diseases. Pain 117:197-210, 1983.

63. Acello B. Meeting JCAHO standards for pain control. Nursing 30(3):52-4, 2000.

64. Wisconsin Cancer Pain Initiative. Building an Institutional Commitment to Pa

Resource Manual for Improvement. Madison, WI: Wisconsin Cancer Pain Initiati

65. Ventafridda V, Branchi M, Ripamonti C, et al. Studies on the effects of antidepress

antinociceptive action of morphine and on plasma morphine in rat and man. Pain 

66. American Pain Society (APS); Principles of Analgesic Use in the Treatment of 

2nd ed. Skokie, IL: American Pain Society, 1992.

67. Newshan G, Wainapel S. Pain characteristics and their management in persons wit

68. Anand A, Carmosino L, Glatt AE. Evaluation of recalcitrant pain in HIV-infected ho

Acquired Immune Deficiency Syndrom 7:52-6, 1994.

69. Patt RB, Reddy SR. Pain and the opioid analgesics: Alternate routes of administrat

PAACNOTES Nov:453-8, 1993.

70. Kimball LR, McCormick WC. The pharmacologic management of pain and discomfo

the end of life: Use of opioid analgesia in the hospice setting. J Pain Symptom Ma

71. Newshan G, Lefkowitz M. Transdermal fentanyl for chronic pain in AIDS: A pilot s

Manage 21:69-77, 2001.

72. Murray MD, Brater DC. Adverse effects of nonsteroidal anti-inflammatory drugs on 

Ann Intern Med 112:559-60, 1990.

73. Radeck K, Deck C. Do nonsteroidal anti-inflammatory drugs interfere with blood pr

patients? J Gen Int Med 2:108-12, 1987.

74. Breitbart W, Passik S, McDonald M, et al. Patient-related barriers to pain manageme

patients. Pain 76:9-16, 1998.

75. Bruera E, Breuneis C, Patterson AH, MacDonald RN. Use of methyphenidate as an 

in patients with advanced cancer. J Pain Symptom Manage 4:3-6, 1989.

76. Breitbart W, Mermelstein H. Pemoline: an alternative psychostimulant in the mana

in cancer patients. Psychosomatics 33:352-6, 1992.

Chpt 04 1-17-03.p65 1120
U.S. Department of Health and Human Services • Health Resources and Services Administration 

ppypgy 

81. Ventafridda V, Bonezzi C, Caraceni A, et al. Antidepressants for cancer pain and ot

deafferentation component: Comparison of amitriptyline and trazodone. Ital J Ne

82. Getto CJ, Sorkness CA, Howell T. Antidepressant and chronic malignant pain: a re

Manage 2:9-18, 1987.

83. Magni G, Arsie D, Deleo D. Antidepressants in the treatment of cancer pain. A sur

Pain 29:347-53, 1987.

84. Walsh TD. Controlled study of imipramine and morphine in chronic pain due to ad

al., eds. Advances in Pain Research and Therapy. New York: Raven Press, 155-6

85. Botney M, Fields HC. Amitriptyline potentiates morphine analgesia by direct actio

system. Annals of Neurology 13:160-4, 1983.

86. Malseed RT, Goldstein FJ. Enhancement of morphine analgesics by tricyclic antide

Neuropharmacology 18:827-9, 1979.

87. Ventrafridda V, Caraceni A, Gamba A. Field testing of the WHO Guidelines for Cancer 

demonstration projects. In KM Foley, JJ Bonica, V Ventrafridda, eds. Proceeding

Congress on Pain, Vol. 16. Advances in Pain Research and Therapy. New York: R

88. Spiegel K, Kalb R, Pasternak GW. Analgesic activity of tricyclic antidepressants. An

89. Gram LF. Receptors, pharmacokinetics and clinical effects. In GD Burrows, et al., 

Elsevier: Amsterdam, 81-95, 1983.

90. Merskey H, Hamilton JT. An open trial of possible analgesic effects of dipyridamat

4:34-7, 1984.

91. Devor M. Nerve pathophysiology and mechanisms of pain in causalgia. JAutonomic 

92. Pilowsky I, Hallet EC, Bassett EL, Thomas PG, Penhall RK. A controlled study of am

chronic pain. Pain 14:169-79, 1982.

93. Max MB, Culnane M, Schafer SC, et al. Amitriptyline relieves diabetic neuropathy p

and depressed mood. Neurology 37:589-96, 1987.

94. Sharav Y, Singer E, Dione RA, Dubner R. The analgesic effect of amitriptyline on c

Pain 31:199-209, 1987.

95. Young RJ, Clarke BF. Pain relief in diabetic neuropathy: The effectiveness of imipr

Diabetic Med 2:363-6, 1985.

96. Sindrup SH, Gram LF, Brosen K, Eshoj O, Mogenson EF. The selective serotonin reu

effective in the treatment of diabetic neuropathy symptoms. Pain 42:135-44, 1990

97. Max MB. Effects of desipramine, amitriptyline, and fluoxetine on pain and diabeti

326:1250-6, 1992.

98. Tiegno M, Pagnoni B, Calmi A, et al. Chlorimipramine compared to pentazocine as 

in post-operative pain. Int J Clin Pharmacol Res 7:141-3, 1987.

99. Hammeroff SR, Cork RC, Scherer K, et al. Doxepin effects on chronic pain, depressi

J Clin Psychiat 2:22-6, 1982.

100. Langohr HD, Stohr M, Petruch F. An open and double-blind crossover study on the 

(Anafranil) in patients with painful mono- and polyneuropathies. Eur Neurol, 21:

101. Gomez-Perez FJ, Rull JA, Dies H, et al. Nortriptyline and fluphenazine in the symp

neuropathy: A double-blind cross-over study. Pain 23:395-400, 1985.

102. Davidoff G, Guarracini M, Roth E, et al. Trazodone hydrochloride in the treatment 

traumatic myelopathy: a randomized, double-blind, placebo-controlled study. Pain 

103. Breitbart W. Psychotropic adjuvant analgesics for cancer pain. Psycho-Oncology 7

Chpt 04 1-17-03.p65 1121
122 U.S. Department of Health and Human Services • Health Resources and Services Adm

107. Hynes MD, Lochner MA, Bemis K., et al. Fluoxetine, a selective inhibitor of seroton

morphine analgesia without altering its discriminative stimulus properties or affinit

Life Sci 36:2317-23, 1985.

108. Diamond S, Frietag FG. The use of fluoxetine in the treatment of headache. Clin J 

109. Geller SA. Treatment of fibrositis with fluoxetine hydrochloride (Prozac). Amer J 

110. Pick CG, Paul D, Eison MS, Patsernak G. Potentiation of opioid analgesia by the an

Eur J Pharmac 2:375-81, 1992.

111. Portenoy RK. Adjuvant analgesics in pain management. In D Doyle, GWC Hanks, N 

Textbook of Palliative Medicine, 2nd ed. New York: Oxford University Press, 361-9

112. Beaver WT, Wallerstein SL, Houde RW, et al. A comparison of the analgesic effect m

morphine in patients with cancer. Clinical Pharmacological Therapy 7:436-66, 

112. Maltbie AA, Cavenar SO, Sullivan JL, et al. Analgesia and haloperidol: a hypothesi

40:323-6, 1979.

113. Lechin F, Vander Dijs B, Lechin ME, et al. Pimozide therapy for trigeminal neuralg

114. Breitbart W, Marotta RF, Call P. AIDS and neuroleptic malignant syndrome. Lance

115. Fernandez F, Levy JK. Psychiatric diagnosis and pharmacotherapy of patients wi

Goldfinger SM, Kaufman, eds. Review of Psychiatry, Vol.9. Washington, DC: Americ

116. Swerdlow M, Cundhill JG. Anticonvulsant drugs used in the treatment of lacerating 

Anesthesia 36:1129-34, 1981.

117. Caccia MR. Clonazepam in facial neuralgia and cluster headache: clinical and elect

Eur Neurol 13:560-63, 1975.

118. Bruera E, Chadwick S, Brennels C, Hanson J, MacDonald RN. Methylphenidate ass

treatment of cancer pain. Cancer Treat 71:67-70, 1987.

119. Forrest H. Dextroamphetamine with morphine for the treatment of post-operative 

New Eng J Med 296: 712-15, 1977.

120. Menza MA, Kaufman KR, Castellanos AM. Modafinil augmentation of antidepressan

J Clin Psychiatry 61:378-81, 2000.

121. Fromm GH. Trigeminal neuralgia and related disorders. In Portenoy RH, ed. Pain: 

Syndromes. NeurologicClinics (7). Philadelphia: W.B. Saunders Co., 305-19, 198

122. Lyndstrom P, Lindbloom T. The analgesic tocainide for trigeminal neuralgia. Pain 

123. Chabal C, Jacobson L, Madano A, Chaney E, Ballell AV. The use of oral mexiletine 

peripheral nerve injury. Anesthesiology 76:513-17, 1992.

124. Dunlop R, Davies RJ, Hockley J, Turner P. Letter to the editor. Lancet 1:420-1, 198

125. Brose WG, Cousins MJ. Subcutaneous lidocaine for treatment of neuropathic cance

126. Paice J, Ferrans CE, Lahley FR, et al. Topical capsaicin in the management of HIV

neuropathy. J Pain Symptom Manage 19:45-52, 2000.

127. Passik S, Breitbart W, Rosenfeld B, et al. AIDS specific patient-related barriers to pa

Proceedings of the 13th Annual Meeting of the American Pain Society, Miami, FL, N

128. Pereira J, Lawlor P, Vigano A, Dorgan M, Bruera E. Equianalgesic dose ratios for op

proposals for long-term dosing. J Pain Symptom Manage 22:622-87, 2001.

129. McCaffery M, Beebe A. Pain: Clinical Manual for Nursing Practice. St. Louis: R

130. JCAHO Pain Standards. www.jcaho.org/standard/pm_hap.html.

131. Breitbart W, Kaim M. Rosenfeld B. Clinicians’ perceptions of barriers to pain mana

Symptom Manage 18:203-12, 1999.

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Rocío Hurtado, MD and Eric L Krakauer, MD, PhD

INTRODUCTION

■ Constitutional symptoms, reported by more than 50% of people wit

often significantly compromise both physical functioning and quality 

mon constitutional symptoms include weight loss, fatigue, fever and 

can be related to myriad potential etiologies including opportunistic 

metabolic dysregulation, medication-related toxicities and advanced A

Attempts should be made to determine and, when possible, treat the u

stitutional symptoms. Yet some underlying causes are refractory to tre

tings the necessary resources remain unavailable. Even where highly act

(HAART) is available and the chronic phase of HIV disease is prolo

constitutional symptoms may arise from or be exacerbated by cumula

ties or by toxicities of the antiretroviral medications themselves.

Nevertheless, particularly in the late stages of HIV disease, aggressiv

often can improve a patient’s quality of life regardless of the effects 

therapies. Thus, it is important that clinicians in all settings be skillfu

comfortable constitutional symptoms and in combining HIV-specific 

tions for optimal patient care. The following sections and Table 5-1 ad

HIV wasting, fatigue, fever and sweats.

HIV WASTING

■ HIV wasting syndrome is a common AIDS-defining diagnosis in th

estimated lifetime frequency of 70% to 90% among AIDS patients who 

therapy.4

 It is defined by the Centers for Disease Control and Prevention 

more than 10% of baseline body weight in conjunction with fever, weak

than 30 days. However, less stringent definitions, such as loss of 5% to 

are widely employed in clinical practice.5

Mechanisms of HIV wasting are complex and include the following:

• Diminished or inadequate nutrient intake

• Excessive nutrient loss

• Metabolic dysregulation6, 7

Causes of inadequate nutritional intake often include one or more of th

odynophagia due to candidiasis, cytomegalovirus, herpes simplex virus

anorexia, nausea, or vomiting due to infection, malignancy, medicati

symptoms such as pain; and psychological factors such as depression, anx

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Megestrol acetate Can increas

400-800 mg po qd body weight 

Potential si

diabetes, Cu

hypogonadi

insufficienc

Prednisone Use lowest 

20-80 mg po qd reserved for 

prognosis a

Dexamethasone

4-16 mg po/iv per day in 1 dose

or 2 divided doses

Dronabinol

2.5-5 mg po bid-tid

Testosterone

Testoderm TTS patch Can increas

5 mg/day mass, and q

men with co

Androderm patch nadism. Inv

2.5 - 5 mg/day

AndroGel topical

5 g/day

Testosterone enanthate or

testosterone cypionate

200 mg IM q2weeks

Other Anabolic Agents

Oxandrolone Can promot

10-20 mg/day in 2-4 eugonadal m

divided doses liver toxicit

virilization 

Growth hormone Long-term e

0.1 mg/kg/day sc Should not 

line. Extrem

Fatigue Psychostimulants

Methylphenidate Do not give 

2.5-5 mg po qAM or bid in for depressi

AM and at noon; maximum due to opioi

60 mg/day in 2 divided doses agitation.

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Pemoline Severe hepa

18.75 mg po qAM or bid at Not first-lin

AM and noon

Corticosteroids

Dexamethasone Studied onl

4-16 mg po/iv qd in 1 dose progressive

or 2 divided doses

Fevers and Sweats Antipyretics

Acetaminophen NSAIDs ma

650-1000 mg po/pr q6hr useful in pa

malignancie

Choline magnesium trisalicylate with cholin

500-1000 mg po bid-tid trisalicylate 

with ibupro

Ibuprofen concomitan

200-600mg po q6 - 8h cytoprotect

Indomethacin

25-50 mg po/pr tid

Rofecoxib

12.5-50 mg po qd

Corticosteroids

Dexamethasone Studied onl

4-16 mg po/iv qd in 1 dose or progressive

2 divided doses

Anticholinergics (for sweats)

Hyoscyamine May cause d

0.125-0.25 mg po qhs-q4h tion, tachyc

may cause c

Glycopyrrolate

1-2 mg po qhs-tid or

0.1-0.2 mg sc/iv qhs-qid

H2-antagonists (for sweats)

Cimetidine

400-800 mg po bid

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While there is evidence that HAART can reduce the severity of weight 

HIV disease, as many as 24% to 48% of patients may continue to lose 

combination antiretroviral therapy. 11-16

The first step in managing HIV wasting is to make every effort to incre

intake comfortably to meet the elevated metabolic demand seen in 

reversible causes of inadequate nutrient intake and nutrient loss, such 

tions or medication side effects, should be identified and addressed if p

sures to manage HIV wasting include appetite stimulants and anabol

gens and growth hormone.

Appetite Stimulants

Two agents used to combat HIV wasting by stimulating the appeti

and dronabinol. Corticosteroids may also be effective.

Megestrol Acetate

Megestrol acetate, a synthetic progestational agent, can reduce ano

gain primarily by increasing fat mass. Randomized controlled trials h

significant increase over placebo in food intake, weight gain, and ov

over an 8-12 week period.17, 18 The recommended dose in HIV-associate

day in a single oral dose. It may be used in conjunction with anabolic ag

or both. There is probably no benefit (and may be additional risk) in ad

the regimen of a patient already taking a corticosteroid at moderate o

have not been done.

While side effects of megestrol acetate generally have been conside

evidence suggests that they may be more frequent and severe than p

Reported side effects related to its corticosteroid activity include indu

diabetes mellitus and, in the long term, Cushing’s syndrome and—wit

of therapy—adrenal insufficiency. With prolonged administration, m

minishes gonadotropin secretion and thus can cause or exacerbate hyp

ciation with hypercoagulability and osteonecrosis also has been sugg

intervention, clinicians should weigh the potential benefits and burden

the context of an individual patient’s goals, values and life expectancy

Corticosteroids

Corticosteroids have been shown to improve appetite and food intake i

same population, they can also reduce pain, nausea and vomiting, and 

mood, strength, performance status, and overall quality of life.19 It is 

with similar symptoms may benefit from corticosteroids, but this has n

There is some evidence that any decreases in anorexia, weakness, and 

oids may be temporary.28 In addition, the risk of serious side effects 

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twice per day. Once beneficial effects are noted, the dosage can be re

that maintains the beneficial effect. Short-term side effects may incl

retention and psychosis.

Dronabinol

Dronabinol has been shown to increase appetite and decrease nause

gain has been reported.29, 30 The usual starting dose is 2.5 mg orally twi

dinner; this may be increased to 5 mg orally thrice daily. Central ner

such as confusion, anxiety, emotional lability, euphoria or hallucinatio

as many as 10% of patients, yet in most patients these side effects resol

of continued use.30 If symptoms persist or are severe, reducing dosage 

a day before dinner or at bedtime may be helpful.

Testosterone

Hypogonadism has been reported in as many as 50% of men and w

Several studies have shown that testosterone deficiency may contribu

sexes.31 In this setting, hypogonadism most often is due to impaired 

resulting from malnutrition, chronic disease, or medications such as phe

acetate.32 Less frequently, hypogonadism may be primary and result fr

infection of the gonads, medication side effects, or malignant infiltrat

Androgen deficiency leads to loss of lean body mass and also may cau

anemia and depression. Replacement therapy may thus have a signific

overall well-being.33 Randomized controlled trials of testosterone repla

disease have shown significant weight gain, increases in lean body ma

quality of life scores, libido, mood and energy.31, 34

Once a diagnosis of testosterone deficiency is established in men, appr

be undertaken via transdermal patch, androgen gel or intramuscular 

tions are associated with liver toxicity). Daily scrotal and non-scrotal 

available, and a dose of 5 mg/day has been shown to increase lean bod

the application site may be relieved by applying a small amount of 0.1% 

the skin under the reservoir. One percent transdermal testosterone g

2.5-7.5 g/day and should not be applied to the genital area. Finally, the 

tions, testosterone cypionate and enanthanate, are given in doses of 2

The administration of androgens to women with HIV wasting and low s

currently under investigation. A pilot study showed that physiological d

μg transdermally daily) can increase weight and improve quality of li

needed to evaluate the safety and efficacy of androgen replacement fo

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In eugonadal men with HIV wasting, oxandrolone may promote weight 

at a dosage of 20 mg orally per day in two to four divided doses. It sh

caution in women and patients with liver disease.

Growth Hormone

Recombinant human growth hormone (rhGH) has been shown to in

mass, and strength in patients with HIV wasting in a daily dose of 0.1 

ously for up to 12 weeks.39-41 Side effects may include edema, arthra

Because long-term side effects are unknown, rhGH is not considered 

current cost of rhGH therapy is about $1750 per week.

Other Therapies

Exercise in the form of supervised, progressive resistance and fitne

in HIV wasting, but few data are available. Cytokine modulators, s

pentoxifylline, are experimental and not recommended.

FATIGUE

■ Fatigue is a common symptom and may affect as many as 85% of AIDS 

compromise quality of life by diminishing physical functioning and causi

As is the case with fatigue associated with other life-threatening illnes

tigue is usually multifactorial. Frequent etiologies include anemia, inf

gression, hormonal insufficiencies, metabolic derangements, medicati

tion, wasting, depression, insomnia, malignancy, and end-stage organ 

Assessment of Physical Symptoms, Table 3-1.)

If possible and appropriate for the clinical situation, interventions sho

ing cause(s) of fatigue. For example, erythropoietin can be used to tr

fatigue appears to be due primarily to anemia and whose anemia is 

hemolysis, or deficiency of iron, B12 or folate. The dose is 40,000 units 

along with iron supplementation.42 Testosterone replacement can be u

with fatigue as described in the section on HIV wasting above.

Treatments for fatigue of multiple etiologies include psychostimulants 

Psychostimulants

Methylphenidate is frequently used to treat fatigue or depression 

patients with advanced life-threatening illnesses of almost any etiolo

action makes it especially useful for depression in patients with a li

weeks, when the usefulness of selective serotonin reuptake inhibitors i

for treating sedation due to opioid analgesics. In very frail patients, it c

as low as 2.5-5 mg orally at 8 a.m. or twice per day at 8 a.m. and noon. It s

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Dextroamphetamine has indications and properties very similar to tho

The recommended dosage is the same.

Pemoline, which is chemically unrelated to amphetamine and has m

effects, also may be effective against fatigue and depression in advance

ing HIV disease.45 In the only randomized controlled trial of psychostim

positive people, methylphenidate (7.5 mg twice daily) and pemoline 

nificantly better than placebo at improving not only fatigue but also d

distress, and overall quality of life.46 The starting dosage of pemoline is 

or twice per day at 8 a.m. and noon. The dosage can be increased as t

maximum daily dose of 112.5 mg. However, due to its potential for seve

line should be used with caution and should not be used in patients w

Corticosteroids

Corticosteroids have been shown to temporarily improve fatigue in 

possible that many HIV/AIDS patients may experience similar benef

setting. Information on the use of corticosteroids for fatigue and oth

palliative care can be found in this chapter, in the section on HIV was

There is direct evidence that corticosteroids improve fatigue in one sub

patients: those with disseminated mycobacterium avium complex (M

ease despite combination antimycobacterial therapy. Low-dose dexam

led to a rapid decrease in fatigue, fever and night sweats within one we

in a series of 12 patients. In similar studies of (low-dose) corticoster

patients, weight gain, fever reduction, and improved sense of well-bei

While randomized controlled trials have not been done, corticosteroi

the palliative care of patients with end-stage AIDS and MAC refract

therapy.49

FEVERS AND SWEATS

■ Fevers, sweats, or both are frequent causes of suffering and poor q

tients. Fever increases metabolic rate, and persistent fever is associat

loss and wasting.6

 Etiologies of fever include infections, HIV-associat

fects of drugs (e.g., trimethoprim-sulfamethoxazole and other sulfa d

antiretrovirals, amphotericin B), hormonal dysfunction, and auto-imm

While any source of fever can cause sweats, sweats without fever ma

some infections, malignancies, endocrinopathies and medications. F

and withdrawal from opioids may cause sweats in the absence of fever. 

ate, efforts should be made to identify and treat the underlying etio

Medications used to treat fever and sweats of many etiologies include 

oids and anticholinergics.

Chapter 05 1-17-03.p65 1129
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ticularly helpful in patients with fevers related to neoplasms and/or 

inflammatory effect is desired. The gastrointestinal toxicity of NSAIDs 

choline magnesium trisalicylate (500 to 1000 mg orally twice-thrice 

cyclooxygenase-2 inhibitor such as rofecoxib (12.5 to 50 mg orally eve

cytoprotective agent such as an H2 antagonist, proton pump inhibitor, o

μg orally twice to four times per day).

For severe, unremitting fever, acetaminophen and an NSAID both can 

a staggered fashion with the patient receiving one or the other every 

provide an alternative that can cut down on the number and frequency 

be equally effective in some situations. As described above in the sec

dexamethasone (4 to 6 mg/day) led to a rapid decrease in fever, night s

one week of initiating treatment in a series of 12 patients with dissem

antimycobacterial therapy. 47-49

Keeping the patient warm and dry will help to prevent chills and shiver

lyte loss from fever and sweats is considerable, the clinician must we

dens of aggressive hydration to restore and maintain fluid balance in li

values, and prognosis.

Sweats associated with fever are treated as above. If sweats are unre

described above still may prove helpful. Anticholinergics also may be tr

(0.2-0.6 mg subcutaneously or intravenously every 1-4 hours, or by 1.5 m

5 patches every 72 hours) or hyoscyamine (0.125-0.25 mg orally every 1

ergic with minimal central nervous system effects is glycopyrrolate (1

bedtime or up to thrice daily or 0.1-0.2 mg subcutaneously or intraven

time or up to every 6 hours). In addition, the use of the H2 antagonist 

orally twice daily) may provide symptomatic relief. 28, 50

CONCLUSIONS

■ In people with HIV/AIDS, constitutional symptoms such as wasting, 

often severely compromise quality of life and overall sense of well-being

these symptoms throughout the course of the illness is an important c

AIDS care. As with any intervention, clinicians should weigh the poten

of treatments for constitutional symptoms for each individual patient i

When a patient’s life expectancy is short and maximizing his or her qua

goal, possible long-term side effects of a treatment become less rele

likely to improve short-term quality of life.

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1. Fantoni M, Ricci F, Del Borgo C, et al. Symptom profile in terminally ill AIDS pa

STDs 10:171-3, 1996.

2. Vogl D, Rosenfeld B, Breitbart W, et al. Symptom prevalence, characteristics, an

outpatients. J Pain Symptom Manage 18:253-62, 1999.

3. Lorenz K, Shapiro M, Asch S, et al. Associations of symptoms and health-related 

a national study of persons with HIV infection. Ann Intern Med 134:854-6, 2001

4. Bartlett JG. The Johns Hopkins Hospital 2002 Guide to Medical Care of Patien

ed. Philadelphia: Lippincott Williams & Wilkins, 2001.

5. Grinspoon S, Corcoran C, Miller K, et al. Body composition and endocrine funct

immunodeficiency syndrome wasting. J Clin Endocrinol Metab 87:1332-7, 1997

6. Ropka M, Williams A. HIV Nursing and Symptom Management. Sudbury, Mass

1998.

7. Corcoran C, Grinspoon S. Treatments for wasting in patients with the acquired 

N Engl J Med 340:1740-50, 1999.

8. Nemechek P, Polsky B, Gottlieb M. Treatment guidelines for HIV-associated was

Proceedings 75:386-94, 2000.

9. Coodley GO, Loveless MO, Nelson HD, Coodley MK. Endocrine function in the H

J Acquir Immune Defic Syndr 7:46-51, 1994.

10. Grinspoon S, Corcoran C, Lee K, et al. Loss of lean body and muscle mass corre

hypogonadal men with acquired immunodeficiency syndrome and wasting. J Cl

8, 1996.

11. Raghavan S, Grant LB, Barisch G, et al. Change in log HIV RNA & protease inhi

weight change in HIV+ men in a national clinical trial. Presented at 12th World 

June 28-July 3, 1998.

12. Schwenk A, Beijenherz A, Kremer G, et al. Impact of protease inhibitor treatme

prevalence of malnutrition in HIV positive outpatients. Presented at 12th World 

June 28-July 3, 1998.

13. Gilbert CL, Muuraheinen N, Collins G, et al. Body composition in HIV-infected m

Presented at 12th World AIDS Conference Geneva, June 28-July 3, 1998.

14. Wanke CA, Silva M, Knox TA, et al. Weight loss and wasting remain common com

infected with human immunodeficiency virus in the era of highly active antiretr

31:803-5, 2000.

15. Berger D, Cimoch P, Nemechek P, et al. Measurement of body weight and body c

highly active antiretroviral therapy (HAART). In program and abstracts of the 3

Interscience Conference on Antimicrobial Agents and Chemotherapy, Toronto, O

October 1, 1997.

16. Moore RD, Chaisson RE. Natural history of HIV infection in the era of combinat

AIDS 13:1933-42, 1999.

Chapter 05 1-17-03.p65 1131
132 U.S. Department of Health and Human Services • Health Resources and Services Administ

20. Hollander H, Katz MH. HIV infection. In Tierney LM, McPhee SJ, Papadakis MA

Diagnosis and Treatment 2001. New York: Lange, 2001.

21. Koller E, Mann M, Malozowski S, et al. Aseptic necrosis in HIV seropositive pati

for megestrol acetate. AIDS Patient Care STDS 14:405-10, 2000.

22. Sullivan PS, Dworkin MS, Jones JL, Hooper WC. Epidemiology of thrombosis in 

The adult/adolescent spectrum of HIV disease project. AIDS 14:321-4, 2000.

23. Padmanabhan S, Rosenberg AS. Cushing’s syndrome induced by megestrol acet

Clin Infect Dis 27:217-8, 1998.

24. Gonzalez del Valle L, Herrero Ambrosio A, Martinez Hernandez P, et al. Hypergl

acetate in a patient with AIDS. Ann Pharmacother 30:1113-4, 1996.

25. Engelson ES, Pi-Sunyer FX, Kotler DP. Effects of megestrol acetate therapy on b

circulating testosterone concentrations in patients with AIDS. AIDS 9:1107-8, 

26. Leinung MC, Liporace R, Miller CH. Induction of adrenal suppression by meges

AIDS. Ann Intern Med 122: 843-5, 1995.

27. Shevitz A, Knox TA. Nutrition in the era of highly active antiretroviral therapy. 

2001.

28. Neuenschwander H, Bruera E. Asthenia. In Doyle D, Hanks GWC, MacDonald N

Palliative Medicine, 2nd ed. New York: Oxford University Press, 1998.

29. Beal JE, Olson R, Laubenstein L, et al. Dronabinol as a treatment for anorexia a

patients with AIDS. J Pain Symptom Manage 10:89-97, 1995.

30. Timpone JG, Wright DJ, Li N, et al. The safety and pharmacokinetics of single-a

therapy with megestrol acetate and dronabinol for the treatment of HIV wasting 

AIDS Res Hum Retroviruses 13:305-15, 1997.

31. Grinspoon S, Corcoran C, Parlman K, et al. Effects of testosterone and progress

eugonadal men with AIDS wasting: a randomized, controlled trial. Ann Intern M

32. Best TR, Jenkins JK, Murphy FY, et al. Persistent adrenal insufficiency seconda

therapy. Am J Med 82:676-80, 1987.

33. Mylonakis E, Koutkia P, Grinspoon S. Diagnosis and treatment of androgen defi

immunodeficiency virus-infected men and women. Clin Infect Dis 33:857-64, 20

34. Rabkin JG, Wagner GJ, Rabkin R. A double-blind, placebo-controlled trial of tes

for HIV-positive men with hypogonadal symptoms. Arch Gen Psychiatry 57:141-

35. Miller K, Corcoran C, Armstrong C, et al. Transdermal testosterone administrat

immunodeficiency syndrome wasting: a pilot study. J Clin Endocrinol Metab 83

36. Berger JR, Pall L, Hall CD, et al. Oxandrolone in AIDS-wasting myopathy. AIDS 

37. Strawford A, Barbieri, T, Van Loan, M, et al. Resistance exercise and supraphysi

eugonadal men with HIV-related weight loss: A randomized controlled trial. JAM

38. Batterham MJ, Garsia R. A comparison of megestrol acetate, nandrolone decan

for HIV associated weight loss. Int J Andrology 24:232-40, 2001.

39. Schambelan M, Mulligan K, Grunfeld C, et al. Serostim Study Group: Recombin

in patients with HIV-associated wasting: a randomized, placebo-controlled trial. 

1996.

Chapter 05 1-17-03.p65 1132
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

University, Division of Infectious Diseases and AIDS Services.

43. Wagner JG, Rabkin JG, Rabkin R. Dextroamphetamine as a treatment for depre

patients: a pilot study. J Psychosom Res 42:407-11, 1997.

44. Krakauer EL. Palliative care. In Goroll AH, Mulley AG, eds. Primary Care Med

Management of the Adult Patient, 4th ed. Philadelphia: Lippincott, 2000.

45. Breitbart W, Chochinov HM, Passik S. Psychiatric aspects of palliative care. In 

MacDonald N, eds. Oxford Textbook of Palliative Medicine, 2nd ed. New York: 

46. Breitbart W, Rosenfeld B, Kaim M, Funesti-Esch J. A randomized, double-blind, 

psychostimulants for the treatment of fatigue in ambulatory patients with huma

disease. Arch Intern Med 161:411-20, 2001.

47. Wormser GP, Horowitz H, Dworkin B. Low-dose dexamethasone as adjunctive th

Mycobacterium avium complex infections in AIDS patients. Antimicrob Agent

48. Steven N, Pithie A, Wood M, Innes J. Corticosteroid therapy for AIDS patients w

intracellulare infection. AIDS 8:136-8, 1994.

49. Dorman S, Heller H, Basgoz N, Sax P. Adjunctive corticosteroid therapy for pati

disseminated Mycobacterium avium complex infection has failed. Clin Infect D

50. Pittelkow MR, Loprinzi CL. Pruritis and sweating. In Doyle D, Hanks GWC, Mac

Textbook of Palliative Medicine, 2nd ed. New York: Oxford University Press, 199

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Connie J Beehler, MD

INTRODUCTION

■ This chapter will focus on basic methods of treating the suffering 

common pulmonary symptoms in AIDS patients. The approaches off

relieving discomfort, even when the underlying disease is not treatab

chapter will explore issues related to end-of-life decisions in the care o

monary diseases. The second part will address treatment for specific p

HIV-positive individuals are at risk for a variety of disease processes tha

tion or cause respiratory symptoms (see Table 6-1). In fact, pulmonar

are among the most frequent causes of death in HIV disease. Sympto

involvement can be very disturbing to patients. When symptoms incl

even a sensation of suffocation, these can lead to escalating feelings o

Relief of symptoms can make a great deal of difference in the quality o

even when the underlying disease is progressing.

Table 6-1: Presenting Symptoms and Radiographic Finding

 of Common Pulmonary Manifestations of AIDS

Lymphoma Pneumocystis Bacte

or Kaposi’s Carinii Pneum

Sarcoma Pneumonia

Bullae/cavities ■ ■ 

Chest Pain ■ ■ ■ ■ ■ ■ 

Desaturation ■ ■ ■ ■ ■

Dyspnea on Exertion ■ ■ ■ ■ ■ ■ 

Fever ■ ■ ■ ■ 

Hemoptysis ■ ■ ■ 

Infiltrates ■ Bilateral/Patchy Unilatera

Night Sweats ■ ■ ■ ■ 

Nodules ■ ■ Embo

Onset of Symptoms Gradual Weeks /gradual Acu

Pleural Effusion ■ ■ ■ Rare ■ ■ 

Productive Cough ■ ■ 

Key: ■ Occurs occasionally

■ ■ Occurs commonly

■ ■ ■ Occurs very frequently

Source: Carla Alexander, MD

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Although the overall incidence of PCP has decreased, people still die 

ticularly when the organism becomes resistant to available therapies

consists of sulfamethoxazole/trimethoprim, pentamidine, atovaquone o

ing on the degree of resistance, although toxicities may limit the us

Corticosteroid therapy (40 mg of prednisone daily) is recommended 

patients with moderate to severe disease or compromised gas excha

emia (pulse oximetry <88%). If antibiotics are used, prednisone may be 

of treatment.

While the frequency of PCP infections has decreased in recent years, o

disease, such as bacterial pneumonias and non-Hodgkin’s lymphoma, h

lent in AIDS patients.2

 Recurrent bacterial pneumonia with bacterem

in patients with a history of injection drug use. Streptococcus pneum

organism in 20 to 70% of cases; Pseudomonas aeruginosa is also com

increased rates of bacteremia and death.3

 Even when treated vigorou

exacerbate the progression of HIV disease.4

PALLIATIVE PULMONOLOGY AND END OF LIFE ISSU

Use of Oxygen in Terminal Care

Adequate oxygenation is essential to maintain normal cellular functi

the specific effects of mild to moderate hypoxemia in terminally ill pa

tients approach the final stages of life, supplemental oxygen may be be

For example, oxygen may be useful in reducing cognitive deficits assoc

is often assumed that oxygen may reduce the sensation of dyspnea, b

consistently support this.5

Oxygen would be expected to be therapeutic if hypoxemia is stimulati

effort and contributing to fatigue. However, the frequency with which 

since some studies have shown that even moderate hypoxemia does n

ventilation.6 In addition, there is a great deal of individual variation in t

ratory drive to hypoxemia and, under most circumstances, carbon dio

plays a greater role than oxygen in regulating respiratory rate and vo

tients, hypoxemia probably does not produce noticeable symptoms, pa

tion is already declining from progressive disease.

Even in healthy individuals, hypoxemia is not necessarily uncomfortabl

toms similar to inebriation. In exercises with Air Force flight crews in 

of the participants initially were unable to determine when they were 

In fact, though they perceived no changes, they were often surprised 

decreased color vision, impaired mental acuity, and slower reflexes by 

to instructions to put on oxygen masks. It was only after restoring norm

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are likely to become increasingly hypoxemic. They may be unaware of 

and may resist efforts to improve oxygenation by removing a mask or 

non-rebreathing masks may create feelings of claustrophobia and an

administration of oxygen may not be a comfort measure, although in s

life-prolonging. If prolonging life is no longer a goal of the patient, fam

prolonging measures are now compromising comfort, it may be approp

tinuing supplemental oxygen. This can be done by not replacing oxyge

removed by the patient or by titrating oxygen flows downward and th

mental oxygen over a matter of minutes or hours. Oxygen can always b

appears to have increased symptoms or discomfort associated with s

cases this is not necessary.

Use of Antibiotics in Terminal Care

While we have made remarkable progress in increasing life expect

tious diseases over the last one hundred years, there still may be wisdom 

monia is the old man’s friend.” Death from infection, particularly if th

debilitated, and immunocompromised, can be rapid and peaceful. Dys

mal when dehydration limits fluid accumulation in the infected lung 

response is impaired. Pain and cough usually can be managed success

Likewise, with effective palliation of symptoms, central nervous system 

plasmosis, bacteremia, or intra-abdominal sepsis may help to preven

dying process in end-stage patients. In these situations it may not be in 

to pursue aggressive treatment of infections, even though it may be re

Infections that are not life-threatening but do contribute to discomfo

with the appropriate antibiotics. For example, bronchitis or urinary tr

distressing symptoms that respond well to antibiotic treatment. But i

illness, symptomatic relief of life-threatening infections may be all tha

may be adequate to combat the symptoms of Pneumocystis carinii pne

opioids may be enough to control the distressing symptoms of bacteria

The Role of Fluids and Dehydration in Terminal Care

Decreased fluid intake is a normal part of the dying process and ca

dration. There is some evidence that complaints of dry mouth are n

patients than in patients receiving hydration during the final stages o

increased mouth-breathing in both groups.

If symptoms of oral dryness are well controlled, dehydration can actu

efits to people in the final days of life. First, dehydration decreases sy

infections. With a decrease in total body water there is less interstitia

ated with the inflammatory response to an infection. This leads to a 

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secretions in a dying patient.

On the other hand, in some situations fluids may be beneficial. For e

tions may be deleterious for a patient who has an effective cough and is 

this situation, careful systemic hydration may promote comfort by allo

airway secretions. Nebulized saline has been used to humidify airways

systemic fluids for thinning secretions and can irritate the airways.

For some terminal patients, partial rehydration may reduce agitation or 

fluids also may be appropriate for the dehydrated patient who seeks to 

sense of well-being in order to achieve specific short term goals. How

completed the work of preparing for death, intravenous fluid administ

able, because it can prolong the dying process and/or increase the disc

Use of Opioids and Risks of Respiratory Depression

Concerns about respiratory depression have sometimes limited the 

even in the presence of significant symptoms. Current evidence indicat

are very carefully titrated against symptoms of real pain or dyspnea, res

not present a serious danger.7

It appears that pain itself opposes the respiratory depressant effect of th

mechanism for this is not known. This idea is supported by the obser

undergo procedures such as nerve blocks to relieve pain may experien

afterward on the same doses of medication that had no negative impact o

procedure.7

 It has also been found that arterial carbon dioxide tensio

ventilation, remained in the normal range over a wide variety of plasma 

seriously ill patients with COPD or bronchogenic cancer.8

 It is likely th

depression increases if opioid doses are raised rapidly or are given in exc

control symptoms.

When opioids are used for treatment of dyspnea, rather than pain, ther

respiratory depression, although opioids can easily be used safely in 

verse effects, it is again helpful to titrate doses carefully against the 

toms. In this case, the symptom is the patient’s perception of dyspnea—

ratory rate or effort. If tachypnea is felt to reflect a component of anx

symptoms can be treated with lorazepam.

In many situations, an elevated respiratory rate may not be especial

patient, and in some settings can represent a physiologic adaptation to 

tilation. If this is the case, a reduced respiratory rate is not a good ind

tion. Life-threatening respiratory depression and breathing patterns th

nal respiration can develop if excessive doses of opioids are used to r

Since dying patients can have respiratory rates as low as 6 to 10 breath

monitor changes in respiratory rate, as well as the actual rate.

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tions against specific patient-identified symptoms to determine the sma

vent distress. Titration against symptoms, rather than the use of standa

to adjust for individual variation in opioid needs, metabolism, and tole

ment should be on the patient’s perception of discomfort, not just on sig

to the health care providers.

Use of Ventilators and Bilevel Positive Airway Pressure in 

Mechanical support of respiration may be very helpful for patients w

ure from a disease process that is likely to be reversible. In these pa

ventilator is usually accomplished uneventfully, once the underlying c

promise has been treated. The decision to use mechanical ventilation 

patients with end-stage disease such as visceral Kaposi’s sarcoma or 

potential for weaning is in serious doubt.

The complexity of these decisions is illustrated by the following inform

ventilated AIDS patients. A summary of seven studies done on AIDS pa

1994 revealed survival rates (discharge from the hospital) of 11% to 

quired mechanical ventilation for PCP. In other studies, mortality was 

a CD4 count < 50/mm3 (94%), the development of pneumothorax (100

PCP treatment before intubation (80 to 90%), and ventilation for long

To identify appropriate interventions, health care practitioners must 

patient’s specific goals, which may change over time as the disease pro

likely to be irreversible, mechanical ventilation should be undertaken on

specific needs or desires of the patient. In most cases of irreversible 

ventilation is inappropriate, even if patients initially express a desire for 

Usually, education and thoughtful discussions about patient and family g

ing decisions toward appropriate care in these settings. If possible, discu

benefits of ventilation, along with issues about CPR, should be undertak

that precipitates the need for a decision. Patients seriously considerin

ventilation need to understand clearly, in advance, the severe limitations

and frequent complications associated with permanent ventilator depen

Bilevel positive airway pressure (BiPAP) provides positive pressure 

and maintains low levels of pressure in the circuit during expiration to 

This may be a helpful option for patients with lung disease who need ex

night or during part of the day to avoid fatigue or maintain adequate bl

between BiPAP and a ventilator needs to be discussed carefully to help 

either, will help them achieve their goals. Careful thought needs to go i

ing BiPAP as an option to support a terminal patient dying with pulmon

may help to postpone, but usually cannot prevent, ultimate respiratory 

expectations should be carefully explored before deciding to use this t

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premise that discontinuation of an intervention that artificially prol

from choosing to forego the treatment in the first place.

It is essential to be certain that the decisionmakers and others who 

understand clearly that the expected outcome of discontinuing venti

sible processes leading to death, such as immediate cessation of breat

period of gradual respiratory failure, should be explained, when appro

Once decisions have been finalized, a specific time can be set for d

There are advantages to allowing all participants to have time to review 

on it” by scheduling the procedure for the next day or later. Support 

chaplains, social workers, or others can be planned in advance. The pa

an area that offers privacy and space for all family and friends who 

important to allow, even encourage, rituals that have meaning for the p

prayers, readings or singing. The specific details of such plans depend o

of those who will be present.

Plans for the use of supplemental oxygen should be considered befor

support. If oxygen supplementation will be stopped, it is often helpful 

down to room air before discontinuing the ventilator. If it will be contin

tion should be reduced to levels easily supported by a simple mask 

cannula (30% to 35%).

The process of discontinuation of mechanical ventilation is simple an

tients can be prepared with intravenous access and sedated, if nec

midazolam or lorazepam. It is difficult to imagine any circumstance

would be appropriate during discontinuation of the ventilator. Once se

phine (starting with 2 to 4 mg if opioid-naïve) can be titrated to suppre

nea, and tracheal suctioning may be done one final time.

The ventilator can then be disconnected at the endotracheal tube, repl

or switched to a ventilator mode with no positive pressure ventilati

lenced and unnecessary monitoring devices removed.

If an endotracheal (ET) tube is in place, there is often a desire to ex

time of discontinuing the ventilator. Again, this decision should be ca

vance. Extubation provides a more normal appearance for the patient

associated with breathing through a tube, and may allow the patient to 

and airway protection will be more difficult without the tube in place.

Some patients occasionally have a reflex laryngospasm from the irritati

is removed and are unable to breathe. While this symptom can 

administration of additional intravenous midazolam or morphine, it m

and family. The development of agonal respiration and “death rattle” m

observers and is more easily managed with suction available through th

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can be managed just like a person with respiratory failure who choos

ventilator in the first place. Dyspnea can be treated with opioids and an

lorazepam, as described in the section below, Symptom Management.

Whether patients live for minutes or days after removal of mechanica

toms usually can be controlled effectively and their suffering prevented

fully, the goals and desires of patients and their loved ones are honore

ventilator discontinuation.

The Option of Continuous Sedation for Respiratory Distre

Sometimes, standard palliative measures fail to give effective relief fro

This can occur when a patient’s anxiety level is very high, when symptom

ciated with the sensation of being unable to breathe, or when the pati

these situations, if all other measures have failed, symptomatic relief m

continuous sedation. This is obviously a serious decision and must hav

patient (if possible), family, friends, and the entire care team. All involve

patient will be unable to eat and is likely to die without awakening. I

informed consent may be desirable.

Once the decision for continuous sedation has been made, several opti

2). Patient symptoms can sometimes be treated with increasing d

(lorazepam 1 to 3 mg every 4 to 6 hours orally or intravenously) and opi

parenterally or 5 to 15 mg orally, if opioid-naïve). Doses can be titra

control symptoms or as the disease progresses.

If lorazepam is not sufficient to sedate a frightened, anxious patient wh

midazolam can be used. A loading dose of midazolam can be adminis

necessary, subcutaneously, at a rate not greater than 1 to 2 mg per minu

of sedation is achieved. Doses in the range of 3 to 15 mg are often neede

be titrated against symptoms to achieve peaceful sedation. Sedation c

continuous infusion of midazolam given intravenously or subcutaneous

1 and 3 mg an hour and titrating upward to 5 to 10 mg/hour, if needed

Table 6-2: Continuous Sedation

Medication Dose Frequency 

Lorazepam 1 to 3 mg 2 to 4 hrs 

Diazepam 5 to 10 mg 4 to 12 hrs 

Midazolam 1 to 10 mg/hr Continuous 

Pentobarbital 100 to 200 mg 4 to 6 hrs 

Phenobarbital 60 to 120 mg 6 to 12 hrs 

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are both very effective in maintaining sedation and may help to redu

Medication doses may need to be adjusted frequently and these patients 

to maintain comfort. However, with careful attention to the details of do

and a peaceful death are possible.

Options for Patient Control over the End-of-Life Events

Before recommending life-prolonging interventions for a terminally 

to have a clear idea of how a suggested treatment will enhance the pers

him or her to meet specific goals. Just because we can intervene to pr

sarily mean that we always should. More often than we may recognize

course” results in the least suffering and the easiest process of dying po

stances. Patients need to know this.

It is obviously important for patients to understand their treatment 

course of their disease. As they approach the end of life, this is no less 

to know that they have more control over the final events of their liv

realize. It is the role of patients, armed with accurate information a

disease and prognosis, to decide when it is time to stop “fighting” the 

transition allows patients to begin focusing their remaining energy tow

ness of living and giving attention to the work of preparing to die. Duri

be offered the further options of choosing or refusing antibiotics or ot

cations, fluids, artificial nutrition, or blood transfusions. Patients also 

exercising these options can affect the timing and manner of death. 

with people can be difficult and the timing is critical. However, for mo

tion is ultimately reassuring and comforting.

Promises to Keep

Although respiratory symptoms have the potential to be frightening 

the principles of palliative medicine allows most people to die comfor

often very reassuring to patients and those who love them to know in ad

be prevented and symptoms controlled with the use of appropriate me

adage suggested that the role of medicine was “to cure sometimes, to 

always.” With the knowledge and drugs available now, we can almost 

comfort. We can make promises to patients that weren’t possible a few 

comfort and relief from suffering. Patients need to know this—in adva

time comes, they need to experience the reality of that reassurance.

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ing and less effective. For patients who are still able to cough effectiv

be directed at reducing the exertion required to bring up secretion

involves the use of expectorants like guaifenesin which may increase 

crease viscosity. To avoid patient fatigue, it may be appropriate to us

bine dextromethorphan with an expectorant in order to raise the thre

attempting to thin secretions.

The mucolytic drug, N-acetylcysteine, can reduce the internal disulfi

cious secretions and may allow easier expectoration. This drug has be

as an oral medication without significant side effects, when administer

mg twice a day. Although N-acetylcysteine is not approved by the FDA 

States, it is often available at American health food and vitamin stores

N-acetylcysteine approved in the U.S. is a solution (Mucomyst or Muc

solized for inhalation (3 to 5 ml of 20% solution) up to four times a 

through a tracheostomy (1 to 2 ml of 20% solution) every 1 to 4 hours. 

irritating to the airways and is not used frequently because of the r

spasm.

Dehydration can increase sputum viscosity and exacerbate difficulties 

temic hydration, orally or intravenously, is the most effective solution t

cation of inhaled oxygen is a helpful comfort measure to reduce sympt

ing when oxygen is being administered. However, little effective hydra

monary secretions occurs with airway humidification or use of saline a

Antihistamines can be useful in controlling a number of uncomfortab

associated with allergen-induced bronchospasm or rhinnitis. These dru

palliative medicine to treat nausea, vestibular disorders, anxiety and, 

secretions at the end of life. However, antihistamines have a marked dr

secretions and can produce secretions that are thick, tenacious and 

This can lead to mucus plugging of airways and result in worsening 

mismatching in the lungs. Some of the negative effects of antihistamin

with diligent efforts to maintain good hydration, but the risks of the 

always be weighed against the benefits, especially in patients with inc

monary secretions.

During the terminal stages of life, patients may be more comfortable if 

the trachea, larynx and pharynx are reduced. Even if patients are n

distress caused by airway secretions, the airway sounds associated wi

may be profoundly disturbing to family, friends, and caregivers. Sinc

mucus glands are stimulated by cholinergic input, anticholinergic dru

way secretions from these sources.

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Guaifenesin liquid/syrup Guaifenesin LA tabs N-Acetylcysteine N-Acetylcysteine soln (e.g., Mucomyst) Fluids Scopolamine Hyoscyamine sulfate Atropine Diphenhydramine 100 – 400 mg 600 – 1200 mg 300 – 1200 mg 3-5 ml of 20% solution 1-2 ml 20% solution As tolerated 1-3 patches (1.5 mg) 0.125 – 0.5 mg 0.4 – 0.8 mg 25 – 50 mg 4 to 6 hrs 12 hrs 12 hrs 6 to 12 hrs 1-4 hrs 72 hrs 4 to 6 hrs PRN 4 to 6 hrs PRN 4 to 6 hrs P

PP

Inhaled 

Intrat

PO

Trans

POPO

PO, IV

Table 6-3: Treatment of Respiratory Secretions Thin secretions Reduce mucus production Goal Medication Dose Frequency Ro

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may partially respond to frequent repositioning of the patient, with a s

or supine positions that allow pooling of secretions in the pharynx or l

Treatment of Dyspnea

Dyspnea is a general term that describes a subjective sensation, a

ness of breathing.”11 Patients may use a variety of words or phrases to 

symptoms, such as chest tightness, breathlessness, air hunger, unabl

feeling of suffocation or smothering, or unable to get enough air.12 The s

with exertion and often limit the patient’s activity. Extensive researc

simple, clear explanation of the physiological basis for the symptom of 

explanation is that the sensation of shortness of breath occurs when the 

in the lungs is disproportional to the respiratory effort involved in brea

erbated when a patient’s respiratory muscles are fatigued or have inad

Surveys of outpatients with HIV/AIDS indicate that shortness of breat

fied as a problem by between 11% and 48% of the patients.13 The differen

in AIDS patients includes pulmonary infections, pulmonary malignanci

gestive heart failure, marked anemia, and metabolic abnormalities. Ma

can lead to chronic respiratory muscle fatigue that also contributes to d

can precipitate or worsen this symptom in combination with other eti

The sensation of dyspnea is not necessarily associated with low oxygen 

fact, the oxygen saturation of hemoglobin and oxygen partial pressure 

in spite of very distressing symptoms. On the other hand, some patient

emia have little or no feeling of dyspnea associated with their abnorma

the severity of dyspnea does not necessarily correlate with the severity 

pulmonary function test values. While dyspnea is usually associated w

disease, it can occur with no detectable evidence of abnormalities 

terminally ill cancer patients, 24% had no evidence of pulmonary or c

symptoms of dyspnea.14 For patients with some exercise tolerance, the 

be evaluated with a pulmonary exercise test that measures expired a

strenuous exercise. However, this approach is seldom practical or usef

nal illnesses.

Treatment of Reversible Causes of Dyspnea

Palliative care aims to relieve the discomfort associated with feeling sh

of the origin of the symptom. The first step in treatment is to identify 

dyspnea and treat these with appropriate medications such as diure

steroids (Table 6-4). Corticosteroids, in particular, are used generous

not only for relief of bronchospasm but also to reduce symptoms associa

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Bronchospasm Congestive Heart Failure Bacterial Pneumonia Pneumocystis carinii Tuberculosis Pleural Effusions 

Wheezing Decreased air movement Nonproductive cough Inspiratory rales Edema Elevated JVP Orthopnea Productive cough with changing sputum Localized rales or consolidation Fever, chills Nonproductive cough Hypoxemia, pain, dyspnea Fever, cough Dullness and decreased air movement 

Bronchodilators – adrenergic and anticholinergic Corticosteroids Diuretics Cardiac medications Morphine Oxygen Antibiotics Expectorants Cautious hydration Morphine for pain/dyspnea Oxygen Antibiotics Corticosteroids Antibacterial drugs Thoracentesis 

Inh

Inhaled, IV

PO, 

PO

PO, SC

Inh

PO, 

P

PO, 

PO, IV

Inh

PO

PO, IV

PO

Cause of Dyspnea Physical Signs Treatment Options Ro

Table 6-4: Treatment of Potentially Reversible Causes of Dyspnea

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Intrinsic airway obstruction Copious airway secretions Pulmonary embolism Cause of Dyspnea Physical Signs Treatment Options Ro

Table 6-4: Treatment of Potentially Reversible Causes of Dyspnea (continued) Worsening dyspnea Distal absent breath sounds or localized wheezing Risk factors, like scarring, bronchogenic cancer Diffuse rhonchi, especially over upper airways Ineffective or absent cough Sudden onset of dyspnea Risk factors for venous thrombosis Bronchoscopic laser treatment Internal radioisotope application Airway stent Anticholinergic drugs Antihistamines Dehydration Anticoagulation - heparin Low molecular weight heparin Warfarin PO, 

PO, I

IV

S

P

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Symptomatic Treatment of Dyspnea

Oxygen may be therapeutic if hypoxemia is stimulating increased 

contributing to fatigue. As discussed earlier (see section, “Use of Oxyg

is not clear how often this occurs. For normoxic patients, low flow oxyg

may provide a beneficial sensation of air flowing through the upper r

help reduce anxiety or fear associated with the feeling of being unabl

Table 6-5.)

For some dyspneic patients, cool temperatures and/or a fan blowing a

helpful. Positioning is often critical for comfort and is usually deter

ences. In some settings, people may find it helpful to lie on the side with 

reduce ventilation-perfusion mismatch. However, when fluid or secreti

the good lung up may facilitate drainage away from the healthier gas e

case, frequent repositioning can help limit dependent lung consolidat

Other nonpharmacologic measures that have been used to palliate s

clude relaxation techniques, massage, acupuncture and guided image

effectiveness of each of these approaches would be helpful.

Although large pleural effusions are not common with PCP or other 

thoracentesis may provide relief when patients have symptomatic e

sions tend to re-accumulate rapidly, often within a few days, making 

minimally beneficial. Thoracentesis also may contribute to protein de

lignant effusion may contain 80 grams of protein) and may increase 

makes future pleurodesis less likely to be successful. Pleurodesis, an

shunts, can reduce dyspnea caused by large recurrent pleural effusions 

adequate life expectancy to justify the stress and discomfort associate

For dyspnea that persists in spite of specific therapy, opioids have be

reduce this distressing sensation in end-stage disease.15 In opioid-naïve 

morphine solution can be given every 3 to 4 hours and the dose titrated 

needed. If symptoms persist, anxiolytic medications such as lorazepam 

creased before titrating opioids much higher. Sublingual administration 

tion (usually 20 mg/ml) is often successful in patients who need very low 

lowing capacity, or are not alert. For patients who do not tolerate oral ad

morphine tablets can be used rectally at oral doses, or injectible morphin

ously or intravenously using approximately one third of the oral dose (st

In recent years, there have been reports of the use of aerosolized morp

this point, there is no compelling evidence that this route of adminis

use of oral or subcutaneous morphine. Although the mechanism by wh

nea is not completely understood, it is likely (though not proven) that 

central receptors which mediate a decrease in the sensation of discomf

is not a strong basis for selecting nebulized opioids over oral or subcuta

tration unless the patient indicates a definite preference. If nebulized 

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Hypoxemia Dyspnea with or without hypoxemia Dyspnea Dyspnea Anxiety 

2-5 liters/min As tolerated If opioid naïve, 3-5 mg, titrate up to 20 mg as needed If on opioids for pain, one sixth to one tenth of daily dose Parenteral dose is 1/3 of oral or rectal dose. If opioid naïve, 1-2 mg, titrate up as needed If on opioids for pain, one sixth to one tenth of daily dose 0.5 to 1 mg Titrate up to 2 mg if needed 

PRN or continuously PRN or continuously 4 to 6 hours and/or PRN q 2 hrs PRN q 2 hrs. 4 to 6 hours and/or PRN q 2 hrs PRN q 2 hrs 4 to 8 hrs or PRN q 4 hrs 

Oxygen Fan or cool air toward face Morphine* (oral) Morphine* (parenteral) Lorazepam** 

Inh

Top

PO, S

SC

PO, I

Treatment Indication Dose Frequency Ro

Table 6-5: Symptomatic Treatment of Dyspnea 

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anxiety, and at times, panic. These symptoms can be addressed with s

(usually beginning with 0.5 mg) every 6 to 8 hours, given orally or subli

val can be reduced to every 4 hours if needed and some patients requi

1 or 2 mg or sometimes more. The oral lorazepam tablets can be ea

amount of water, or even the morphine solution, if the patient has diff

concentrated lorazepam solution (2 mg/ml) is also useful for these pa

If symptoms occur less than once or twice a day, these medications can 

symptoms persist or occur regularly, discomfort is controlled best if the 

regular intervals around the clock. For some patients, frequent, regular 

effective than long-acting opioids, perhaps because of the recurrent 

toms are being carefully treated. However, it is reasonable to attempt a 

phine (beginning with 15 mg every 12 hours) when the total daily d

morphine approaches 30 mg in 24 hours.

Treatment of Cough

Cough is a common symptom in AIDS, reported by 19% to 34 % of pa

tom prevalence in HIV disease.13 Coughing may result from pulmonary 

production, chronic bronchitis, bronchospasm, tumors in the airways, 

aspiration, post-nasal drip, drugs such as the angiotensin-converting e

ognized esophogeal reflux with aspiration, or inhaled irritants.

When cough is nonproductive, bronchospasm and reflux should be inc

diagnoses. A history of COPD, smoking, or asthma is helpful in making 

spasm, but it can occur with no relevant history. Physical signs includ

phase of respiration, use of accessory muscles, decreased air moveme

may be elicited only on forced expiration.

Cough from bronchspasm often responds to bronchodilators including a

salmeterol, ipratropium bromide, and either inhaled or systemic cor

who are moving little air with each breath, systemic corticosteroids a

of bronchodilators may be needed. If symptoms improve and tidal volu

metered dose inhalers may be effective. If esophogeal reflux is suspect

antagonists or proton pump inhibitors may be appropriate.

When cough suppression is needed to prevent exhaustion or control an 

cough, several drug choices are available (Table 6-6). Dextromethorp

threshold, but in many cases opioids are needed to suppress the cough 

of codeine start at 10 to 20 mg every 4 hours; upward titration is freque

high as 120 mg have been described, though not recommended.

For routine use, hydrocodone is preferred over codeine because it ha

generally is tolerated better. Hydrocodone doses start at 5 mg every 

increased as needed. Morphine or other opioids can also be used for c

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lief.17, 18 Three ml of a 2% lidocaine solution (without epinephrine) c

four times a day as needed. Because of the risk of decreasing the sensiti

this anesthetic agent, patients should be advised to avoid eating or drin

at least an hour, although sips of water are usually tolerated within mi

of inducing bronchospasm and so lidocaine should be used cautiously 

Table 6-6: Cough Suppression

Medication Initial Dose Frequency 

Codeine 10 - 30 mg 4 - 6 hrs 

Hydrocodone 5 mg 4 - 6 hrs 

Morphine (enteral) 2 - 5 mg 4 hrs 

Morphine (parenteral) 1 - 2 mg 4 hrs 

Lidocaine (1-2% soln) 3 cc 4 to 6 hrs 

Treatment of Noncardiac Chest Pain

Lung tissue is generally not well innervated with sensory nerves and 

diseases that involve the alveoli and lower airways cause little pain. Th

other hand, are supplied with an extensive network of sensory nerves 

sensitive to inflammatory or invasive disorders. Pleural pain usually is 

deep breathing or coughing. Airway inflammation can cause disc

retrosternal chest, and it is thought that pulmonary hypertension also 

discomfort anteriorly over the hilar regions. Sharp or aching chest wa

bone metastases, rib fractures, or muscle injuries (occasionally from c

Most pain in the lungs and chest wall responds well to usual pain med

tory drugs alone, such as aspirin, trilisate, acetaminophen, ibuprofen o

tive. If stronger drugs are needed, combination opioid/acetaminoph

hydrocodone (2.5 to 10 mg hydrocodone/500 mg acetaminophen) eve

(5 mg oxycodone/325 to 500 mg acetaminophen) may be effective, bu

etaminophen should be monitored to avoid exceeding 4 g/day. If hig

needed, routine doses of morphine or oxycodone can be started and ti

while continuing standard doses of anti-inflammatory drugs around th

Treatment of Hiccup

Persistent hiccup is not unusual in terminally ill AIDS patients and 

distressing symptom.19 Because of the interruption of normal activity, 

hiccup can have depression, sleep deprivation, decreased oral intake, an

causes of hiccups include phrenic nerve or diaphragmatic irritation 

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the symptoms, medications can be used (Table 6-7). Chlorpromazine 

times helpful and can be given routinely for prophylaxis if necessary

likely, metochlopramide (5 to 20 mg orally, rectally or intravenously t

may help, and as a last resort, a nasogastric tube, inserted transiently 

ach, may provide relief.

Table 6-7: Treatment of Hiccup

Medication Dose Frequency 

Chlorpromazine 12.5 to 50 mg 6 to 8 hrs PRN 

Metoclopramide 5 to 20 mg 6 to 8 hrs 

Baclofen 5 to 20 mg 8 hrs 

Haloperidol 2 mg 6 to 8 hrs PRN 

Valproic acid 250 mg Daily 

Midazolam 3 to 10 mg PRN 

Midazolam 1 to 5 mg/hr Continuous 

Other treatments with reported benefits include baclofen (10 to 20 m

haloperidol.19 For intractable hiccup, intravenous or subcutaneous mida

to be effective as a bolus (5 to 10 mg), followed, if necessary, by a 

infusion (1 to 5 mg/hr).20

Management of Hemoptysis

Coughing up blood or bloody sputum can be a frightening experienc

threatening. It may at times be difficult to determine whether or not th

the lungs. Nasal, pharyngeal, and upper esophogeal blood may also ooze i

be coughed up.

The most common pulmonary causes of hemoptysis are infections, suc

culosis, and neoplasms. In the majority of cases, blood in the sputum c

ing the underlying infection or suppressing cough to reduce the irritatio

the airways caused by vigorous coughing. An expectorant, and control o

may also be helpful. Coughing can usually be suppressed with opioids a

ing with hydrocodone-containing cough preparations and moving to 3 

every 3 to 4 hours, if needed. The dose can be titrated upward when a

doses are necessary, approximately one third of the oral dose of morph

nously or subcutaneously.

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ing. Bronchial artery embolization or bronchoscopic interventions ar

moptysis, but these approaches probably have limited value in termin

Malignancies and severe infections rarely erode from air spaces into lar

can be devastating when this occurs. Massive bleeding can impair resp

airways, and exsanguinate the patient. In most terminally ill patients

suffering is the most appropriate response. Symptoms of air hunger and c

and complete sedation with benzodiazepines and/or opioids. Midazolam c

or subcutaneously beginning with 2 to 4 mg and titrating quickly upw

patient is still awake and struggling. Larger doses of midazolam may be n

be airway obstruction by blood clots and impending asphyxiation. In 

helpful to add parenteral morphine (5 to 10 mg) intravenously or subcu

In situations where injectible drugs are not available, large doses of m

40 mg) and lorazepam (2 to 4 mg given sublingually) or diazepam (10 m

be appropriate. In patients where significant hemorrhage is a strong p

keep dark towels at the bedside to help lessen the visual trauma to pat

associated with large amounts of bright red blood.

Treatment of Airway Obstruction

Patients who have airway obstruction from endobronchial masses 

often experience worsening dyspnea and increasing anxiety. These sym

nied by signs of stridor, decreased intrathoracic air movement, wheez

Corticosteroids may be helpful in reducing swelling and inflammatio

gression of the disease. If the disease is identified early enough, interv

nal radiation therapy, bronchoscopic laser treatment, airway stent plac

isotope application may provide at least temporary symptomatic relief

When airway compromise is advanced, there may be no effective thera

The focus of treatment then needs to be directed toward control of s

and dyspnea. These symptoms can be addressed with increasing doses 

as lorazepam (beginning with 1 to 3 mg every 4 to 6 hours) and opio

parenterally or 5 to 15 mg orally every 2 to 4 hours). Doses can be titr

As airway obstruction progresses, symptoms of severe respiratory dist

anticipated. At this point it may be necessary to use continuous sedatio

is essential to discuss this option carefully in advance with the patie

patient is likely to die without awakening. If lorazepam is not sufficien

anxious patient who is struggling to breathe, midazolam can be care

with a loading dose of 3 to 15 mg intravenously or subcutaneously, us

greater than 1 to 2 mg per minute. Sedation can be maintained with 

midazolam given intravenously or subcutaneously, or routine doses of 

epines. Morphine can be added, intermittently or continuously via P

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midazolam) to maintain comfort as the airway obstruction progresse

attention to the details of dosing, continuous sedation and a peaceful 

Palliative Treatment of Respiratory Depression

When serious respiratory depression occurs from excess opiods, patien

titration of naloxone. One ampule of 0.4 mg of naloxone can be diluted 

one ml (0.04 mg) of this solution can be injected every five minutes unt

as respiratory depression or hypotension are reversed. The goal is to tre

to totally reverse the opioid effect. The doses required to treat life-thr

ally are not disturbing to the recipient and often do not even awaken t

CONCLUSION

■ Caring for people who are terminally ill is a unique, but rewarding, 

providers. As patients face progressive, incurable diseases, we are no

that even their most distressing physical symptoms can be relieved. Th

distress, such as loss of independence, anxiety about being a burden to f

the impending separation from loved ones, unresolved conflicts or guilt

the goals and purpose of life, also require attention. In addition to effectiv

out patients need a safe environment, willing listeners, and a sense o

need accurate information about their disease, an understanding of tr

what to expect in the future, and as much control of their lives as possib

met, the majority of terminally ill people experience a peaceful and co

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1. Schliep TC, Yarrish RL. Pneumocystis carinii pneumonia. Sem in Resp Inf 14:

2. Wolff AJ, O’Donnell AE. Pulmonary manifestations of HIV infection in the era of 

therapy. Chest 120:1888-93, 2001.

3. Afessa B, Green B. Bacterial pneumonia in hospitalized patients with HIV infec

Complications, ICU Support, and Prognostic Factors of Hospitalized Patients wi

Chest 117:1017-22, 2000.

4. Schneider RF. Bacterial pneumonia. Sem in Resp Inf 14:327-32, 1999.

5. Bruera E, de Stoutz N, Velasco-Leiva A, Schoeller T, Hanson J. Effects of oxygen 

terminal-cancer patients. Lancet 342:13-4, 1993.

6. Ward SA, Robbins PA. The ventilatory response to hypoxia. In Whipp BJ, ed. Th

Man. Manchester England: Manchester University Press, 29-44, 1987.

7. Ahmedzai S. Respiratory distress in the terminally ill patient. Respiratory Dise

1988.

8. Walsh TD. Opiates and respiratory function in advanced cancer. Recent Results 

9. Abrahm JL. A Physician’s Guide to Pain and Symptom Management in Cance

Johns Hopkins University Press, 346, 2000.

10. Rosen MJ. AIDS. In Curtis JR, Rubenfeld GD. Managing Death in the Intensiv

from Cure to Comfort. New York: Oxford University Press, 291-9, 2001.

11. Ripamonti C, Bruera E. Dyspnea: Pathophysiology and Assessment. J Pain Sym

1997.

12. Simon PM, Schwartzstein RM, Weiss JW, et al. Distinguishable types of dyspnea 

breath. Am Rev Respir Dis 142:1009-14, 1990.

13. Alexander CS. Palliative and End of Life Care. In Anderson JR, ed. A Guide to 

with HIV. Rockville, MD: U.S. Dept. of Health and Human Services Health Resou

Administration, 349-82, 2001.

14. Reuben DB, Mor V. Dyspnea in terminally ill cancer patients. Chest 89:234-6, 19

15. Light RW, Muro JR, Sato RI et al. Effects of oral morphine on breathlessness an

patients with chronic obstructive pulmonary disease. Am Rev Resp Dis 139:126

16. Ahmedzai S. Palliation of respiratory symptoms. In Doyle D, Hanks GWC, and M

Textbook of Palliative Medicine, 2nd ed. Oxford: Oxford University Press, 583-61

17. Wilcock A, Corcoran R, Tattersfield AE. Safety and efficacy of nebulized lignoca

and breathlessness. Palliat Med 8:35-8, 1994.

18. Fuller RW, Jackson DM. Physiology and treatment of cough (editorial). Thorax 

19. Walker P, Watanabe S, Brurera E. Baclofen, a treatment for chronic hiccup. J P

16:125-32, 1998.

20. Wilcock A, Twycross R. Midazolam for intractable hiccup. J Pain Symptom Ma

Chapter 06 1-17-03.p65 1155
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Michael Wohlfeiler, MD, JD

INTRODUCTION

■ Gastrointestinal (GI) and hepatobiliary symptoms are ubiquitous 

mated that up to 93% of patients will have significant GI symptoms a

course of their HIV illness.1

 Further, as HIV progresses and the patient b

immunocompromised, the occurrence of GI symptoms increases.2

GI manifestations in advanced HIV disease result from a wide range 

Those etiologies include protozoan, bacterial, fungal and viral infect

lymphoma or Kaposi’s sarcoma; and idiopathic or poorly defined proce

opathy” or apthous ulcerations. At least one study has demonstrated th

tinal enteropathogens predicts shorter survival in patients with HIV in

This chapter offers information for assessing and treating HIV-positi

with GI symptoms, including the following:

• Diarrhea

• Constipation

• Nausea and vomiting

• Dysphagia and odynophagia

DIARRHEA

■ Diarrhea is the most common GI symptom in HIV disease. Studies h

lence of 504

 to 905 percent in persons with advanced HIV infection. Pre

ing to the route of HIV transmission. Centers for Disease Control and P

have shown a higher prevalence of diarrhea in gay men compared to 

through parenteral drug use.6

 Some studies have shown a decline in ch

advent of HAART (highly active antiretroviral therapy), due to a fall i

infected with opportunistic enteric pathogens.7

 Nonetheless, the maj

with HIV continue to report diarrhea during the course of their illness

Assessment

In evaluating a patient with diarrhea, an attempt should first be 

etiology of the diarrhea. A careful history should be taken to determin

• Whether the diarrhea is acute (defined as lasting less than s

or chronic (lasting more than two to three weeks)

• Whether the patient has traveled recently

• The characteristics of the diarrhea (e.g., large or small volum

presence of blood)

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carcinoid syndrome), altered intestinal motility (e.g., irritable bowel 

(laxative abuse).

Medications should be carefully reviewed as a possible cause of the dia

cations discontinued. A number of HAART medications (especially the 

commonly associated with diarrhea. Medical records should be review

patient has been diagnosed previously with any enteric opportunisti

toms often will be secondary to reactivation of that pathologic proce

records can give the palliative care team important insight into the su

therapies.

Depending on the duration and severity of the diarrhea, it may be ap

limited, noninvasive diagnostic work-up. Stools should be sent for rout

ity, acid-fast bacilli culture, ova and parasites and Clostridium dificile 

be considered in patients with advanced immunosuppression (CD4 <

consistent with that disease (i.e., diarrhea accompanied by low-grade f

with or without rebound tenderness). For these patients, an ophthalm

be advisable, since retinitis often coexists with other end-organ CMV 

may be consistent with palliative principles to perform either colonosc

scopy to confirm a suspected diagnosis of CMV colitis, especially now 

tolerated (though expensive) oral medication (valganciclovir) that c

end-organ disease without the need for IV access.

Treatment

Initiation of therapy with limited or no work-up, however, will be app

of patients in advanced AIDS who have diarrhea. If the specific cause 

identifiable, every effort should be made to correct that underlying ca

specific treatable cause will not be found and therapy will need to b

targeted. In some patients, a brief trial of an antiinfective agent such 

ronidazole [Flagyl] or paromomycin [Humatin]) or antibacterial may 

tom control, antimotility agents such as loperamide (Imodium) or dip

bulk supplements like psyllium should be tried initially.

Two recent abstracts found that diarrhea improved in patients given d

with the amino acid L-glutamine or probiotics (acidophilus/bifidobacter

hydrophilic agents absorb water and can be used to enhance stool 

hormone replacement may benefit patients with malabsorption resu

the exocrine pancreas.

Severe, chronic diarrhea may respond only to opioids such as oral tinc

starting dose is 6 drops (0.6 cc) in two ounces of water every four hours

titrated until symptom control is achieved. There is no maximum ceili

Chpt 07 1-17-03.p65 1158
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the fact that it needs to be administered subcutaneously on a regular 

Intravenous fluids may be appropriate in a patient with dehydration s

or chronic diarrhea. Decisions should be made on a case-by-case basis

too severe, oral fluid replacement may be adequate.

In patients known to have a diagnosis of CMV colitis, it may be appro

with one of the approved anti-CMV therapies (ganciclovir/Cytovene, fosc

Vistide or valganciclovir/Valcyte). Standard induction and maintenance 

be followed. Whereas with CMV retinitis maintenance therapy must co

ies have shown that when treating extraocular CMV disease, maintena

discontinued after a relatively short period of time (usually about fou

simply monitored for signs and symptoms of recurrence.

Dosage information for some drugs used to treat diarrhea is presented 

Table 7-1: Antidiarrheal Agents

Drug Class Drug and Dosa

Antimotility Agents Loperamide: 4 mg aft

movement, followed by 

subsequent loose bowe

exceed 16 mg in a 24-h

Diphenoxylate/atropi

(1 to 2 tabs) up to 4 tim

Pancreatic Hormones Pancrelipase: 1 to 3 c

and snacks

Opioids Tincture of opium (pa

water q 4 hours (titrat

Somatostatin Analogues Octreotide: 50 mcg SC 

be titrated up to as hig

CONSTIPATION

Assessment

Though diarrhea is a more frequent problem among end-stage AIDS 

also seen. Constipation can sometimes be difficult to determine since 

normal bowel habits. Constipation is usually defined as a frequency o

than three times a week, but subjective symptoms such as excessive st

fullness and hard stools must also be considered when making the dia

care setting, constipation is usually the result of drugs such as opiates t

ity and/or of reduced physical activity.

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If constipation is more severe, treatment with laxatives may be requir

laxatives can be effectively used, belonging to the following categories

• Stimulant laxatives cause intestinal motility to increase. Co

stimulant laxatives include bisacodyl and cansanthranol.

• Emollient laxatives such as mineral oil are given orally or by 

by penetrating and softening the stool.

• Hyperosmolar agents contain polyethylene glycol and nonab

such as lactulose and sorbitol that act as osmotic agents.

• Saline laxatives exert an osmotic effect that increases intra

content. For prevention of constipation, docusate salts are p

anionic surfactants that lower the surface tension of the sto

of aqueous and fatty substances, thereby softening the stool

Table 7-2 presents dosage information for a variety of agents discusse

relieve constipation.

Table 7-2: Agents to Relieve Constipation

Drug Class Drug and Dosa

Stimulant Laxatives Bisacodyl: 5 to 10 mg 

Casanthranol: 1 to 2 

(syrup) 1 to 2 times da

Senna: 17.2 mg at bed

Osmotic Laxatives Lactulose: 15 to 30 m

administered orally or 

Sorbitol: 70% solution 

(may be administered 

Emollient Laxatives (stool softeners) Docusate: 200 to 800 

Combination Agents Docusate (50mg) plus 

2 to 4 tablets once or t

NAUSEA AND VOMITING

■ Vomiting is under the control of two functionally distinct brain cen

trigger zone is found in the fourth ventricle and when stimulated sends 

center (in the lateral reticular formation) which controls the actual 

ment of nausea and vomiting is based on two principal approaches: c

causes of the nausea and vomiting, and utilizing appropriate pharmac

the symptoms.

Chpt 07 1-17-03.p65 1160
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as activators of the chemoreceptor trigger zone, including several m

quently used in a palliative care setting such as morphine and other op

medications used to treat opportunistic infections and other complica

to cause nausea and vomiting in a significant percentage of patients. Th

azithromycin (used for treatment and/or prophylaxis of mycobacteri

cryptosporidiosis), sulfadiazine (used in treatment of toxoplasmosis)

used in a palliative care setting to treat AIDS dementia complex) and a 

tions.

A thorough physical exam should always be performed to make sure t

have an acute abdomen. Conditions such as pancreatitis, gastritis and 

frequent causes of nausea and vomiting and should be considered in t

Pharmacologic therapy should be directed both at specific suspected 

nists or proton pump inhibitors for gastritis, metoclopramide/Reglan 

symptom control with antiemetics. The choice of antiemetic should be 

ing of the different classes of medications available and their respecti

and therapeutic indices.

Treatment

Serotonin receptor antagonists are considered highly effective an

effects. They work by selectively binding to 5-hydroxytryptamine3

 recep

tor trigger zone. The American Society of Clinical Oncology has classif

having the highest antiemetic therapeutic index.11 The serotonin ant

particularly effective in preventing chemotherapy-induced nausea an

have been used effectively in other settings. This class includes on

granisetron (Kytril).

Substituted benzamides are selective dopamine antagonists that can 

vomiting except motion sickness and inner ear dysfunction. Metoclop

prototypical medication within this class. In addition to antiemetic 

also has substantial peripheral cholinergic effects that enhance gastr

can be particularly useful in treating nausea and vomiting seco

Gastroparesis is frequently present in patients with AIDS and should 

as a possible etiology in patients who report early satiety or who vom

than two hours after a meal. The effectiveness of metoclopramide is l

which include acute dystonic reactions, akathisia and sedation.

Butyrophenones (such as haloperidol and droperidol) and phenothia

and thiethylperazine) are less selective antidopaminergic agents with 

inhibit cerebral dopamine receptors and act primarily at the chemore

cacy of these medications is generally lower than that of metoclopram

clude dystonic reactions, akathisia, sedation and orthostatic hypotens

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HIV/AIDS.

The use of adjunctive medications such as glucocorticoids (dexametha

antihistamines (diphenhydramine, hydroxyzine) or anticholinergics 

tiveness of antiemetics. Antihistamines and anticholinergics are prima

nausea and vomiting resulting from motion sickness or other inner e

not act on the chemoreceptor trigger zone and are of little value in ot

Antihistamines may be a particularly useful adjunct for patients on 

antidopaminergic medications since they will usually prevent dyston

antagonists or proton pump inhibitors can be used to control gastri

reflux disease, which can also be a cause of nausea or vomiting.

Other interventions that can be tried include changing the patient’s d

smaller, more frequent meals until symptoms are under adequate con

severe that the patient is unable to take oral medications, the antiem

tered parenterally or by suppository. For patients with chronic nausea, 

istration of antiemetics should be considered. Finally, appropriate pre

taken to minimize the patient’s risk of aspiration.

Table 7-3 presents dosage information for many of the antiemetic agen

DYSPHAGIA AND ODYNOPHAGIA

■ Prior to the advent of HAART, approximately one-third of AIDS pati

oped opportunistic infections involving the esophagus.12 In fact, esopha

ond only to diarrhea in frequency of gastrointestinal complaints amo

Additionally, since opportunistic disorders of the esophagus usually pr

count has dropped to below 100/mm3, 14 they are problems that will f

tients who have advanced AIDS.

Assessment

The most common symptoms of esophageal disorders in persons with 

odynophagia. Less common symptoms are retrosternal chest pain, coug

may occur secondary to acid reflux or esophagitis. Those processes may, 

and/or the development of esophageal ulcers that can then heal and lea

Infections are the most common cause of esophageal disorders. The 

etiologies are candida and the herpes viruses herpes simplex (relativ

lovirus (more common). Mycobacterium tuberculosis and mycobacter

infectious causes of esophageal disease that are seen less frequently. 

clude idiopathic ulcers, apthous ulcers, Kaposi’s sarcoma, gastroesoph

pill-induced esophagitis.15

Chpt 07 1-17-03.p65 1162
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Phenothiazines Prochlorperazine: 5 t

(may be administered 

Promethazine: 12.5 to 

(may be administered 

Substituted Benzamides Metoclopramide: 5 to 

(may be administered 

Serotonin Antagonists Ondansetron: 4 to 8 m

Granisetron: 1 to 2 mg 

q 12 hours

Dolasetron: 50 to 100

to 100mg IV qd

Anticholinergic Agents Scopolamine: 1.5 mg t

Antihistamines Cyclizine: 50 mg PO q 

Diphenhydramine: 25 

Hydroxyzine: 25 to 10

Meclizine: 25 to 100 m

Glucocorticoids Dexamethasone: 4 to 

divided doses

Cannabinoids Dronabinol: 5 mg 3 ti

Benzodiazepines Lorazepam: 0.5-2.0 m

Dysphagia and odynophagia are important symptoms that must be addr

palliative care setting. If inadequately managed, these symptoms will 

diminution in the patient’s quality of life and lead to other complic

weight loss, malnutrition and the inability to take oral medications. Alm

tions in patients with AIDS are treatable and in many instances pallia

best achieved by treating the underlying disorder; attempts at symptom 

address the underlying pathology will often be unsuccessful.

Chpt 07 1-17-03.p65 1163
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piric trial of antifungal therapy appropriate in these cases.

Treatment

Treatment requires a systemic antifungal since topical therapies s

pension or clotrimazole troches only act locally and thus will be effec

candidiasis. The medication most frequently chosen to treat Candida e

(Diflucan). The typical treatment course with fluconazole would be to 

ing dose and then to place the patient on 100 mg daily. In many patie

therapy will be sufficient to effectively treat Candida esophagitis. Tre

continued and the patient observed for recurrence of symptoms. So

persistent fluconazole therapy and/or doses higher than 100 mg daily

can be used to treat Candida are itraconazole (Sporanox) and ketoco

tient has candidiasis that is resistant to the azoles, it may be necessary 

cations such as amphotericin-B or the new antifungal caspfungin acet

Odynophagia or dysphagia that is caused by CMV infection should be t

ate course of anti-CMV therapy (see guidelines for treating CMV coli

apthous ulcers can often be effectively treated with either a course of 

domide.17 Treating odynophagia without regard to the underlying patho

administering standard analgesics or viscous lidocaine but those app

satisfactory. There is no good symptomatic treatment for dysphagia t

causative pathologic process.

Chpt 07 1-17-03.p65 1164
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1. Gazzard BG. HIV disease and the gastroenterologist. Gut 29:1497-505, 1988.

2. May GR, Gill MJ, Church DL, et al. Gastrointestinal symptoms in ambulatory HI

Dig Dis Sci 38:1388-94, 1993.

3. Heise W, Arasteh K, Shmidt W, et al. Intestinal enteropathogens as factor of red

patients. 12th World AIDS Conference, Durban, South Africa, (Abstract #32117)

4. Dworkin B, Wormser GP, Rosenthal WS, et al. Gastrointestinal manifestations o

immunodeficiency syndrome: a review of 22 cases. Am J Gastroenterol 80:774-8

5. Malebranche R, Guerin JM, Laroche AC, et al. Acquired immunodeficiency synd

gastrointestinal manifestations in Haiti. Lancet 2:873-7, 1983.

6. Antony MA, Brandt LJ, Klein RS, et al. Infectious diarrhea in patients with AIDS

7. Koch J, Schmidt J., et al. HIV-associated diarrhea: the changing spectrum and d

Conference, Durban, South Africa, (Abstract #60635) 1998.

8. Heiser C, French N Gordon P, et al. Dietary supplementation with probiotics, so

reduces diarrhea in HIV-positive men receiving nelfinavir. 1st IAS Conference on 

Treatment, Buenos Aires, Argentina, (Abstract #535) July 9-12, 2001.

9. Huffman F, Walgren M. L-glutamine supplementation improves nelfinavir-assoc

individuals. 1st IAS Conference on HIV Pathogenesis and Treatment, Buenos Air

#536) July 9-12, 2001.

10. Friedman LS, Isselbacher KJ. Nausea, Vomiting and Indigestion. In Fauci AS, e

Principles of Internal Medicine, 14th edition. New York: McGraw-Hill, Health Pr

11. Gralla RJ, Osoba D, Kris MG, et al. Recommendations for the use of antiemetics

practice guidelines. J Clin Oncol 17:2971-94, 1999.

12. Wilcox CM. Esophageal disease in the acquired immunodeficiency syndrome: E

management. Am J Med 92:412, 1992.

13. Bonacini M, Laine LA. Esophageal disease in patients with AIDS: diagnosis and 

Gastrointest Endosc Clin N Am 8:811-23, 1998.

14. Wilcox CM, Monkemuller KE. Diagnosis and management of esophageal disease 

immunodeficiency syndrome. South Med J 91:1002-8, 1998.

15. Talal AH, Dieterich DT. Gastrointestinal and Hepatic Manifestations of HIV Infe

Volberding PA, eds. Medical Management of AIDS, 6th edition. Philadelphia: Sa

16. Kotler D, Reka S, Borcich A, et al. Corticosteroid therapy of idiopathic esophag

Gastrointest Endosc 36:191, 1990.

17. Youle M, Clarbour J, Farthing C, et al. Treatment of resistant aphthous ulcerati

patients positive for HIV antibody. Br Med J 298:432, 1989.

Chpt 07 1-17-03.p65 1165
Chpt 07 1-17-03.p65 1

166
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

David I Rosenstein, DMD, MPH, and Gary T Chiodo, D

INTRODUCTION

■ People who are HIV positive face many challenges, including oral 

most oral health problems are no different from the problems faced 

negative, there are some distinct differences. Further, while some prob

lack of a competent immune system can have an effect on the cours

require a more aggressive approach to treatment, particularly so that w

problem does not escalate into a major problem with serious health co

Palliative treatment of oral problems generally means antibiotics or an

with pain medication and a referral to a dentist—usually within a day o

of HIV disease, as for other syndromes and organ systems discussed in t

between palliative and disease-altering interventions is often blurred. 

tions are often disease-specific, as in the use of antifungal medication 

candidiasis or antiviral medication for herpes simplex stomatitis. Othe

or xerostomia may be treated effectively with palliative medications. M

that develop can be treated effectively by medical providers.

The important concern for medical providers caring for HIV-positive 

thorough oral exam so that if any of the common conditions are pres

cavity, palliative care can be provided and referral to a dentist mad

while immune-competent individuals can be somewhat lax regarding a 

people living with HIV/AIDS should have routine examinations by a de

Although the information provided here is designed for providing pallia

tive treatment is in fact prevention. Prevention is best achieved by reg

and by having the medical provider conduct thorough examinations o

check-up visit. The oral exam should inspect and document tongue, c

tions of the teeth, looking for growths, abnormal mucosa, lesions and tu

more oral manifestations of HIV.

Since early in the course of the AIDS epidemic, more than 30 differe

this disease have been reported. This section will address the seven m

issues facing people who are HIV positive and the immediate treatme

Patients with advanced disease are more likely to have the condition

ymptomatic patients.

Treatments for oral problems in HIV-positive patients are specified in T

Oral Conditions.

Chapter 08 1-17-03.p65 1167
26 picas

A Clinical Guide to Supportive and Palliative Care for HIV/AIDS • Chapter 8: Oral Problems

168 U.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau Table 8-1: Medications for Oral Conditions Condition Problem Medication Dosage Caries “Dry mouth” Sugar-free lemon drops or artificial saliva Abscess Penicillin VK 500mg q6H for 28 doses Oral candidiasis Oral infection Clotrimazole troches Slowly allow to dissolve in mouth, one q4H while awake, for 14 days Fluconazole 100mg 1 tablet/day for 14 days Angular cheilitis Clotrimazole 1% cream Apply two to three times/day until condition clears Recurrent aphthous Minor lesion Fluocinonide (Lidex Cream) or Apply to lesion four times a day stomatitis Triamcinolone acetonide (Kenalog until condition clears in Orabase) Major lesion Same medication as above; if no effect, consider systemic prednisone, tapering doses Recurrent herpes simplex Prodromal stage Acyclovir ointment Apply q3H for 7 days Lesion present Acyclovir 200mg 1q4H while awake for 10 days Periodontal disease Linear erythemetous Chlorhexidine gluconate rinse Rinse with 1/2 oz, bid for 2 weeks gingivitis Necrotizing ulcerative Chlorhexidine rinses and either Both 250 mg, q6H for metronidazole, periodontitis metronidazole or Augmentin1 q8H forAugmentin, for 7 days

1 Amoxicillin/clavulanate potassium
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

Some antiretroviral medications (e.g., indinavir) can cause decrease

known to result in rampant caries; it is not uncommon for patients wit

to have multiple carious lesions. These lesions frequently are at the cer

tooth where the crown meets the roots. The tooth surface at this area i

and more likely to decay at a faster rate. Further, this can lead to an 

can be debilitating. A photo showing rampant decay in the cervical a

Plate 8-1 at the end of this chapter.

In cases of rampant decay, treatment should be expedited, which ma

uses the technique called scoop and fill. As quickly as possible, and us

the bulk of the decay is scooped out, using hand instruments, and the

filling or medium that contains fluoride, so that further decay is inhibit

choice is glass ionomer. Once the teeth are temporized by the scoop 

then go back and restore each tooth in a traditional manner.

Until the patient can be treated by a dentist, several steps can be taken 

first, and clearly most important, is to determine if there are any cavitie

the pulp, causing an infection. This is recognizable by swelling, and wou

providers during a routine examination of the oral cavity. Infections shou

otics, preferably penicillin. Treatment should be immediately impleme

dentist should occur within days. The treatment for an abscess is the sa

and HIV-negative patients.

If there are no obvious infections, but decay is present, particularly if the 

tive care consists of fluoride mouth rinses, which can be prescribed by t

to referring the patient to a dentist. Referral should occur as soon as p

urgent problem.

There are artificial saliva products that can be used with patients who 

ing in part from xerostomia (dry mouth) that can be caused by medic

tion itself. However, the frequency with which these artificial saliva p

may be unrealistic, and patients may prefer to use sugar-free lemon 

saliva, another palliative treatment that is effective. Medical provide

either sugar-free lemon drops or over-the-counter saliva substitutes.

ORAL CANDIDIASIS

■ Oral candidiasis is a relatively frequent problem for people who are HI

has several different forms, the most common being pseudomembranous 

which presents with small white patches any place in the mouth, can be m

or food particles. A photo showing pseudomembranous candidiasis is se

Pseudomembranous candidiasis is generally white, and can easily be w

erythematous area or bleeding under the white patch. The patient us

taste, with food becoming undesirable. Further, there may be pain or a 

ciated with this lesion.

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immune dysfunction, which should be brought to the attention of the m

There are several other forms of candidiasis, all less common than ps

pseudomembranous candidiasis occurs at the corner of the mouth it i

(Color Plate 8-3) Palliative care requires topical antifungal medic

Erythematous candidiasis usually appears on the tongue or hard pala

ance that cannot be wiped off. The fungal infection is usually intracellu

usually appears on the tongue. Both of these lesions can cause altere

pain and burning sensation. Palliative treatment of these condition

pseudomembranous candidiasis.

All forms of candidiasis should be treated promptly. Candidiasis can 

taste sensation, make eating even more difficult. For patients with ad

larly with wasting syndrome, untreated candidiasis can create serious 

As is true for most conditions, as a patient’s viral load decreases, an

prove, the appearance of candidiasis decreases.

ORAL HAIRY LEUKOPLAKIA

■ Oral hairy leukoplakia was a common condition prior to the use of a

still exists, although it is less common now. The lesion is shown in Color 

agent for oral hairy leukoplakia appears to be the Epstein-Barr virus, in 

virus, and the occurrence of this condition appears to be associated wit

The lesion appears as a white patch, almost always on the lateral bor

very characteristic striated appearance. The lesion is benign and usua

tive treatment would be the use of an antiviral medication such as 

treatment may be considered for cosmetic reasons or if the lesions b

some to the patient. However, inasmuch as there usually are no sympt

for any treatment.

Patients need to be advised that this is a condition that generally cau

disappear, particularly as the CD4 count improves. The condition does 

and does not cause a change in taste perception. Lesions usually la

improve or the patient is receiving antiviral medication.

This condition can resemble pseudomembranous oral candidiasis; the 

oral candidiasis can be wiped off, hairy leukoplakia cannot be wiped o

RECURRENT APHTHOUS STOMATITIS (CANKER SOR

■ Apthous stomatitis is a common condition for all patients, irrespe

(Color Plate 8-5) However, in patients who are HIV positive the dura

extended and aphthous ulcers minor become aphthous ulcers major 

ference between minor and major ulcers is the size (major ulcers are m

in diameter) and the seriousness of the condition.

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promised immune system. If the lesions become secondarily infect

implemented immediately. Accordingly, HIV-positive patients require 

sion, irrespective of its size, to prevent it from expanding, creating pote

Palliative care consists of a steroid medication, most frequently topica

ity of an extended problem or progression to recurrent aphthous stom

treating aphthous ulcers include dexamethasone solution (“swish and 

ment (such as Kenalog, sometimes compounded together with an 

Orabase), or even systemic steroids such as prednisone for patients w

pected involvement of the esophagus or lower gastrointestinal tract. 

mide has recently been approved for aphthous ulcers in patients with 

Patients with advanced disease, particularly if they have wasting sy

debilitated, have great difficulty when this lesion causes pain and d

consume food comfortably. Early treatment is key, and palliative care 

right away.

These lesions can be mistaken for recurrent herpes. Patients with 

history of this condition and usually do not suffer from both, so a r

method to determine the condition; viral cultures for herpes simplex c

RECURRENT HERPES SIMPLEX

■ Herpes simplex lesions, like aphthous ulcers, occur frequently irres

status. (Color Plate 8-6) Just as aphthous ulcers can be more problem

tients, the same is true for herpetic lesions. Herpes simplex lesions ca

and more prone to secondary infections in HIV-positive patients. Aga

these can accelerate problems for patients with wasting syndrome by c

ing the ability to eat comfortably.

Herpes simplex lesions start with a prodromal feeling of malaise, fever 

This can be masked in patients who are already debilitated. There may 

sensation. Vesicles form, usually within 24 hours, with rupture shortly a

lesion usually is not treated in an immune-competent patient, and ordin

weeks.

However, in immune-compromised patients treatment should be provi

the use of a systemic antiviral medication for herpes. Topical medicatio

well as systemic medications in this situation. However, if the condition 

to the rupture of the vesicles, topical antiviral medication may be eff

rupture or are well established, systemic treatment with antivirals 

monly acyclovir or famciclovir.

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Periodontal disease—like gingivitis, which is not associated with HIV 

in individuals who are HIV-positive—is treated by the same methods 

tients. The success rate does not appear to depend upon HIV status.

The gingival condition originally known as HIV-gingivitis and now called 

consists of a red lesion on the attached gingiva, which can be very 

periodontal disease. (Color Plate 8-7) Ordinary gingivitis is not pain

periodontal disease. Palliative care until the patient can get to a dent

bial mouth rinses, such as chlorhexidine, and in severe cases, system

should be limited to a short duration, days, or at most, one week, until t

a dentist.

Necrotizing ulcerative periodontitis, which previously was called HIV-p

condition that causes rapid bone loss, including the exposure of the 

attachment. This condition can result in the premature loss of teeth

ment includes antimicrobial mouth rinses, systemic antibiotics Metr

and when necessary, pain medication. Again, the patient should be ref

as is feasible.

Palliative care does not definitively treat the underlying periodontal di

dental examinations and care can either prevent periodontal disease fr

extent of the disease.

OPPORTUNISTIC TUMORS

■ There are several opportunistic tumors that can occur in the mou

with a patient being HIV-positive. The two most frequently occurring 

sarcoma and non-Hodgkin’s lymphoma.

Kaposi’s sarcoma is the most common neoplasm in HIV-positive patie

the endothelial lining of blood vessels and appears clinically as a flat 

purplish lesion that does not blanch with pressure. (Color Plate 8-9

rapidly and can become exophytic. Treatment may be necessary, espe

feres with function. Various chemotherapeutic regimens (e.g., vincrist

as alpha-interferon may be somewhat effective, as well as radiation thera

itself can be associated with regression of KS lesions.

Non-Hodgkin’s lymphoma when seen in the oral cavity is most often an 

mass that can enlarge rapidly. (Color Plate 8-10) Biopsy is required for 

consists of radiation and/or chemotherapy. Until treatment can be imp

is usually not required.

Neither of these conditions is seen until immune suppression is sever

stage HIV disease.

Chapter 08 1-17-03.p65 1172
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

COLOR PLATE 8-1. Cervical caries

Photo courtesy David I Rosenstein, DMD, MPH

COLOR PLATE 8-2. Pseudomembranous candidiasis

Photo courtesy David I Rosenstein, DMD, MPH

COLOR PLATE 8-3. Angular cheilitis

Photo courtesy David I Rosenstein, DMD, MPH

Chapter 08 1-17-03.p65 1173
174 U.S. Department of Health and Human Services • Health Resources and Services Administ

COLOR PLATE 8-4. Oral hairy leukoplakia

Photo courtesy David I Rosenstein, DMD, MPH

COLOR PLATE 8-5. Recurrent aphthous stomatitis (canker s

Photo courtesy David I Rosenstein, DMD, MPH

COLOR PLATE 8-6. Recurrent herpes simplex

Photo courtesy David I Rosenstein, DMD, MPH

Chapter 08 1-17-03.p65 1174
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

COLOR PLATE 8-7. Linear gingival erythema

Photo courtesy David I Rosenstein, DMD, MPH

COLOR PLATE 8-8. Necrotizing ulcerative periodontitis

Photo courtesy David I Rosenstein, DMD, MPH

COLOR PLATE 8-9. Kaposi’s sarcoma

Photo courtesy David I Rosenstein, DMD, MPH

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COLOR PLATE 8-10. Non-Hodgkins lymphoma

Photo courtesy David I Rosenstein, DMD, MPH

Chapter 08 1-17-03.p65 1176
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

David J Kouba, MD, PhD, and Ciro R Martins, MD

INTRODUCTION

■ The prevalence of skin disorders in AIDS patients treated in the 

exceptionally high. Unfortunately, accurate diagnosis and proper trea

both HIV and AIDS can be an especially challenging and often frust

presentation of common dermatoses is often exaggerated into florid c

practitioner also has to be cognizant of more unusual cutaneous disord

be virtually nonexistent in his or her daily practice. Furthermore, bec

nosuppression seen in end-stage AIDS patients, treatment and eradica

almost always difficult, and often not possible. In these instances, ap

needs to be administered in a timely fashion to assure a better quality 

The health care provider will need to be aware of the following in carin

palliative care setting who develop skin disorders.

• Many common dermatoses may have unusual or unusually se

in HIV disease, and especially in advanced and end-stage AI

• The hospice environment predisposes patients with AIDS to 

conditions. This is attributable not only to severe immunosu

also to immobilization, bed confinement, and close quarters

• It is important to recognize primary skin lesions, and to diffe

from cutaneous changes associated with manipulation and t

such as scratching, picking, and rubbing. These are seen in 

with advanced HIV disease, as a consequence of severe, chro

intractable pruritus.

• A thorough skin examination must be done whenever possib

performed under good lighting, with the patient completely 

Examine the whole body including scalp, hair, oral mucosa, 

utmost importance to note the pattern of distribution of the 

of sparing and to determine the predominant type of lesion.

• Simple auxiliary tests done on scrapings of the skin can be d

extremely helpful in narrowing down the differential diagno

performed as often as possible and whenever a microscope i

tests include KOH prep of every scaly lesion, Tzanck smear o

bullous lesion, and mineral oil prep of generalized pruritic p

whenever the clinical morphology or epidemiology are sugge

Cultures for bacteria, fungi, mycobacteria, and viruses shoul

obtained whenever clinical findings suggest an infection.

Chpt 09 1-17-03.p65 1177
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EPIDEMIOLOGY

■ The incidence, prevalence, severity, and clinical appearance of cut

nificantly with the transition from asymptomatic HIV infection to th

Although successful treatment with antiretroviral regimens helps to c

neous disorders, certain skin conditions may actually flare when trea

phase of immunologic recovery develops. Proper understanding of th

related cutaneous disorders can aid in anticipating conditions that m

appropriate diagnosis and treatment measures to enhance the patient’

of disorders range from infectious processes to malignant conditions 

ders to conditions directly related to immobility and the hospice envir

Several studies throughout the world have documented with many sim

lent cutaneous findings that occur as a patient transitions from asympt

AIDS and finally reaches the terminal phase of the disease. One study f

of any skin disorders in the HIV-positive population was 91%, with an a

simultaneous conditions per patient. While xerosis (dry skin) was a c

tive of disease stage, the infectious processes including fungal, bacte

well as inflammatory conditions such as eczema, pruritus, and psoriasi

common when matched with the degree of immunosuppression. Addit

as scabies and malignancy, specifically Kaposi’s sarcoma (KS), were m

nant AIDS and the associated dramatically decreased CD4 counts.1

Although there has been some disagreement between various epidemio

been a few consistent results. Specifically, there seems to be a much h

tious, inflammatory, and neoplastic conditions as one transitions from 

There have been varied reports on the incidence of bacterial infecti

factor that changes the incidence of certain types of cutaneous disorde

graphic location as well as patient population (i.e., intravenous drug us

inner city patients, or homosexual males) dictate the development of s

tions. For example, when comparing Uthayakumar’s1 cohort of 92% hom

study made of 74% IDU and only 9% homosexual men, there was a clea

dence of KS between the two populations with a significantly lower in

lation.3

Another issue borne out from the various demographic studies is the la

absolute CD4 counts and the development of certain cutaneous disord

consistency between development of cutaneous conditions with the gen

logic state of the patient, the standard deviations seen in CD4 counts a

many conditions were so large that statistical significance was lost.3

 In 

tory conditions, which would normally be associated with a healthy, ov

are seen more frequently in the profoundly immunocompromised. Altho

to think of end-stage AIDS as equivalent to a nearly complete lack of 

suffer from a severe, “cytokine haywire” that causes a state of cutaneou

sible for the many inflammatory conditions including pruritus and the m

Chpt 09 1-17-03.p65 1178
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necessary task because the pruritus can cause significant morbidity.

Pruritus can be localized or generalized and is often associated with a st

It can be caused by skin lesions or rashes or it can indirectly induce 

lesions due to trauma, such as from scratching and rubbing. To esta

pruritus, the practitioner should first attempt to identify any prima

follow a rather simple diagnostic algorithm. Examples of types of prim

monly encounters with pruritic eruptions are papules or nodules (“bu

elevated, palpable lesions with large diameter), and exanthems (diffu

the skin). Very commonly one sees combinations of different types of le

be associated with surface changes, such as scaling, crusting, or ulcer

Clinical Presentation

The clinical presentation of pruritus is widely variable because of i

gies (Table 9-1). Localized pruritus is usually associated with primary 

and burrows of scabies or scaling plaques of tinea corporis. However, 

or may not be associated with primary lesions. For example, pruritus 

tive biliary disease may only demonstrate excoriations, but generalized 

spread drying, cracking, and fissuring of the skin, which is responsible 

fortunately, in the terminal stages of AIDS, patients often suffer from 

resenting a combination of multiple pathologies. Often, in addition 

adverse drug reactions, liver failure, and multiple infections, which al

bearable pruritus, making diagnosis and palliative treatment very diff

Table 9-1: Most Common Skin Conditions Associated with

Pruritus in Patients with AIDS

Xerosis cutis

Eczemas: seborrheic dermatitis, nummular eczema, atopic dermatitis, 

Folliculitis

Drug eruptions

Lichen simplex chronicus / prurigo nodularis

Papular urticaria (insect bite hypersensitivity reaction)

Dermatophyte (tinea) infections

Intertrigo (Candida, tinea, herpes simplex)

Scabies

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hypopigmented nodules are often seen on a background of accentuate

nounced skin thickening.

A common consequence of prolonged pruritus and scratching is posti

changes. There is often a racial predilection for these changes in tha

frequently develop hyperpigmented lesions after resolution of the activ

changes may be so extensive and cosmetically disfiguring as to cause 

patient. Pruritus itself is both an anxiety-inducing disorder and a co

that anxiety and related mood disorders help to propagate the vicious 

ing, and itching again. Anxiety and depression, both psychiatric cond

to terminal disease, lower the threshold for pruritus.

Diagnosis

Apart from the requisite thorough medical history, the physical ex

guide diagnosis. The following diagnostic algorithm (adapted from 

represents a simplified way of approaching the diagnosis of pruritic e

on their morphology. The first question to be asked is: “Are primary le

are there intact papules, vesicles, or plaques that have not yet been ma

Are there skin lesions other than those caused by scratching, picking, 

No Primary Lesions Present

If all the cutaneous findings represent the result of scratchi

the skin, then two main diagnostic alternatives exist: the pru

from systemic disease or is psychogenic in origin.

At different stages of HIV infection, pruritus can be the direct 

infection. For example, the initial manifestation of very early 

overt AIDS takes control, the patients often suffer from a tran

illness that may be associated with a morbilliform eruption. T

in nature. Additionally, as the patients succumb to the devast

attack of fulminant AIDS, they suffer from a severe immunolo

Despite the fact that CD4 counts have plummeted, cytokine p

drastically dysregulated and often causes generalized pruritus

Other systemic causes of pruritus are renal failure, obstruct

hyper- or hypothyroidism, diabetes mellitus, multiple myelom

polycythemia vera, lymphoma, or anemia. To rule out these d

workup is recommended as outlined in the section below, O

below. Otherwise, appropriate psychiatric evaluation and tr

indicated.

Primary Lesions Are Present

Once established that a primary cutaneous disease process 

step would be to determine whether these lesions are associ

follicles. One simplified way of doing so is to try to identify t

Chpt 09 1-17-03.p65 1180
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Once it is determined that the lesions are associated with ha

differential diagnosis is available and includes folliculitis, ac

No, Lesions Are Found on Sites Other than Hair Follicles

The remaining primary nonfollicular, pruritic lesions should t

into two main groups: papular/nodular lesions and the scaly/p

eruptions. Diagnosis of papular nonfollicular primary lesions m

includes scabies, insect bites and papular urticaria, drug erup

and Grover’s disease (discussed in section on Skin Problems i

Bedridden Patient on page 198). The most frequently encoun

losquamous eruptions are xerosis cutis, asteatotic eczema, se

dermatophyte infections, and psoriasis, which are differentiat

disease, the quality of the scale, location, and degree of assoc

(discussed in section on Eczemas and Papulosquamous Disea

Objective Data

In patients with HIV, a thorough skin examination will reveal, in 

possible dermatologic cause for the pruritus. In these cases, the skin co

before an expensive workup for possible systemic causes of pruritus i

the skin problem very often clears the pruritus as well.

The laboratory investigation for internal causes of pruritus in the abs

thology and neurologic disease is the same for AIDS patients as it is fo

individual. A complete blood count with manual differential can exclu

vera, or lymphoproliferative disorders. Liver function tests can rule ou

cesses. An electrolyte screen that includes blood urea nitrogen, creat

excludes renal insufficiency, uremia, and diabetes. Thyroid-stimulatin

roid hormone are good primary screens for thyroid and parathyroid di

Treatment

As previously mentioned, the first step is to treat any primary derma

associated with a systemic disease, cure of the underlying systemic pro

sible, therefore therapy is aimed at achieving and maintaining symptom

eral guidelines should be followed, keeping in mind that the main goa

scratching cycle, because scratching induces more pruritus, thus perp

the problem. Some measures that may help most patients with pruritus 

• Modification of showering and bathing habits, advocating the impo

than one shower a day, avoiding hot showers, using soap very sparingl

triginous areas only, and not using any abrasive material such as was

• Adequate moisturization of the skin with daily or twice-daily applica

or creams to prevent or correct xerosis cutis, one of the most comm

patients with advanced HIV disease.

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(0.25%), Doxepin, and Pramoxine.

• Mid- to high-potency topical corticosteroid preparations should be 

lesions of prurigo nodularis and lichen simplex chronicus. These c

with any of the anti-pruritic agents as described above. (See Table 

Harder to control cases can be successfully treated with phototherapy, 

light or ultraviolet A plus psoralen, a photosensitizing agent, in a regim

ever, this method requires a specialized dermatologic facility and sign

schedule of treatments administered three times a week for a minim

therefore not a practical option for most hospice patients.

Intractable pruritus can be successfully controlled with thalidomide b

cant and potentially serious side effects, thalidomide should be used o

Thalidomide should be started at 100 mg qd for one to two weeks follow

blood tests including complete blood count and viral load should alwa

patient is on this medication. Also one should monitor closely for dev

including neuropathy.

Table 9-2: Commonly Used Topical Steroid Preparations

Class Generic Name Trade Nam

I Betamethasone dipropionate Diprolene ointm

Diflorasone diacetate Psorocon ointm

Clobetasol propionate Temovate cream 

Halobetasol propionate Ultravate ointm

II Betamethasone dipropionate Diprolene crea

Mometasone furoate Elocon ointmen

Fluocinonide Lidex gel/ointm

III Fluocinonide Lidex-E cream 

Desoximetasone Topicort LP cre

Triamcinolone acetonide Aristocort A oin

IV Triamcinolone acetonide Kenalog cream 

Mometasone furoate Elocon cream 0

Fluocinolone acetonide Synalar ointme

Hydrocortisone valerate Westcort ointm

V Triamcinolone acetonide Kenalog lotion 

Fluticasone propionate Cutivate cream 

Hydrocortisone valerate Westcort cream 

VI Desonide DesOwen cream

Alclometasone dipropionate Aclovate cream 

Fluocinolone acetonide Synalar cream 

Chpt 09 1-17-03.p65 1182
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

asteatotic, atopic, seborrheic, nummular, and contact dermatitis.

The papulosquamous diseases of the skin are manifold, but have in comm

logical characteristics, namely scaling papules and plaques. Common e

are psoriasis, pityriasis rosea, and xerosis cutis. The papulosquamous an

can affect both HIV-negative and HIV-positive individuals, but, as previou

cal presentation can be drastically altered with advancing immunosupp

Asteatotic Eczema

Also known as eczema craquele (Color Plate 9-2), asteatotic eczema i

usually seen concomitantly with, xerosis cutis generalisata (severely dry 

the most common dermatoses seen in individuals with advanced HIV, pa

ter months, when the degree of humidity in the environment is significa

skin (xerosis) is accompanied by the development of microscopic tears 

ing initially subclinical inflammation, intense pruritus, and subsequen

zema. This condition is usually one of the first papulosquamous/eczemat

usually presenting early when the CD4 counts drop below 400 and, as th

it becomes more generalized, more symptomatic, and more difficult to t

Clinical Presentation

The usual presentation is with xerosis of the skin, characteriz

degrees of superficial fissuring, affecting especially the lower ex

cant disruption of the skin barrier is present, serous oozing and r

The combination of pruritus and disruption in the skin barrier 

higher risk for secondary bacterial infection. When severe, pain 

be a more common symptom. The signs of frank cellulitis, namel

and purulent exudate, should be identified before bacteremia an

Differential Diagnosis

Atopic dermatitis, nummular eczema, seborrheic dermatitis, psorias

scabies, generalized inflammatory reaction to skin infections such 

Treatment

Treatment depends on the extent of disease at presentation. Fi

be determined if an overlying bacterial infection is present. If s

ticed, crusts should be removed with wet compresses and approp

ering common skin pathogens should be given. When infection is 

ous use of emollients and keratolytic agents such as urea, salic

should be given. Although often ineffective, H1 blockers should b

and the inevitable associated excoriation. For clearly inflamma

topical corticosteroid preparations should be used. Saturated 

Emulave and Basis, should also be used, again with copious lubr

Chpt 09 1-17-03.p65 1183
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Clinical Presentation

Pruritic, well-demarcated, erythematous, round plaques, usuall

with scales and/or crusts over the entire surface of the lesion (Co

eczema is the perfect example of how exacting attention to de

lesional morphology will help pinpoint accurate diagnosis. The 

with crusts, as opposed to psoriasis, which has heavy, silvery sca

from tinea corporis, which shows scaling at the periphery and c

the appearance of a “ring,” and pityriasis rosea, which has a “col

the advancing border of the lesion.

Differential Diagnosis

A KOH prep must be performed to exclude multifocal tinea cor

differentials are plaque-type psoriasis and atypical pityriasis ros

Treatment

Mid- to high-potency topical corticosteroids used twice daily on

junction with H1-blocking antihistamines, are the mainstay of 

ease, caution must be taken when applying potent topical steroid

areas, because systemic absorption does occur, and with long-te

suppression of the pituitary axis exists.

Atopic Dermatitis

Atopic dermatitis can flare in individuals with an atopic background 

after decades of complete remission. As with any of the eczemas, it 

acute, subacute, or chronic skin inflammation but, in the terminally 

tures of lichenification, hyperpigmentation, and/or hyperkeratosis pre

Clinical Presentation

The most common presentation of atopic dermatitis in HIV-ne

recurrent dermatitis localized to either the palms and soles, ankle

and antecubital fossae. In HIV-positive individuals, immunologic 

quent outbreaks, which are initially localized or multifocal, but us

and generalized in patients with advanced disease. The clinical fe

are mild to moderate erythema, crusting, hyperkeratosis, and sca

characterized by secondary changes resulting from manipulati

scratching. Skin then becomes thickened, darkened and rough 

superficial skin markings. Atopic dermatitis is a particularly pru

when it becomes chronic, excoriations, crusting, and scarring deve

ing. Commonly affected areas include the face, neck, trunk, fle

tremities, extensor surface of the forearms and lower legs, dorsa

the feet, and palms and dorsum of the hands (Color Plate 9-4).

Chpt 09 1-17-03.p65 1184
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

Topical corticosteroid preparations or the recently introduced top

ment (Protopic) should be used to reduce inflammation. Potent 

II) may be needed at first to gain control of this intensely pru

tapered to more mild steroid agents. Antihistamines such as diph

yzine are very helpful, especially at night. Careful monitoring of 

ondary bacterial infection is very important. Skin dryness aggr

immensely; therefore, liberal use of emollients and soap avoidan

dal oatmeal baths followed by widespread application of petrole

helpful to control pruritus. Patient education to avoid scratching an

Seborrheic Dermatitis

Seborrheic dermatitis very often becomes a more florid eruption in 

the general population, with the extent of disease inversely proportio

CD4 level. Although the incidence of seborrheic dermatitis affecting 

eral public has been estimated at less than 5%, some studies have doc

40% to 80% in AIDS. The follicular yeast Pityrosporum ovale appe

development and maintenance of skin lesions, but it represents only on

may be involved in the pathogenesis of this type of eczema.

Clinical Presentation

Although seborrheic dermatitis presents in healthy persons as 

scaling/crusting eruption, usually localized to the nasolabial fol

head and scalp, the eruption in AIDS can be much more extens

nificantly more pronounced and diffuse. Scales are thicker and 

semble those seen in psoriasis. The skin surface involved is ext

scalp to involve the presternal area, axillae, groin, genitals, and 

Differential Diagnosis

Atopic dermatitis, contact dermatitis, eczematous drug er

inverse psoriasis.

Treatment

Inflammatory lesions on the face can be treated with low-potenc

costeroid creams and lotions or more potent preparations, depen

degree of inflammation. They should be applied twice daily. Fa

susceptible to the damaging effects of long-term use of superpo

langiectasias, atrophy, striae, discoloration); such steroids, there

as a temporizing measure. Ketoconazole 2% topical cream, lotion

mg of ketoconazole orally per day should be tried because it has b

ment successful in 25% of cases.6 Tar and salicylic acid-based 

cases associated with thick scaling plaques on the scalp.

Chpt 09 1-17-03.p65 1185
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Clinical Presentation

Psoriasis can develop in one of two forms, namely localized lesion

The typical lesion is a well-circumscribed, erythematous plaque w

that are easily detached, leaving a bright pinkish/red base (Co

common location is on the areas of pressure and trauma such as 

the extremities, sacral area, hands, feet, and scalp. In patients w

riasis usually presents as a generalized eruption. Most commonly 

more atypical forms such as erythrodermic and pustular psori

associated with severe arthropathy are frequently seen.

Differential Diagnosis

Localized disease: atypical pityriasis rosea, nummular eczema, tin

disease: seborrheic dermatitis, disorders causing erythroderma 

tis and lymphoproliferative disease.

Treatment

Treatment of generalized disease usually requires some form of 

often becomes a difficult issue because of the immunosuppress

toxicity that can be associated with most of the systemic drug

these therapeutic modalities are the immunosuppressive ag

cyclosporine as well as oral retinoids such as acitretin, and bio

such as specific monoclonal antibody therapy. Phototherapy usi

PUVA are both associated with very good response rates. Unfo

practical options for patients in the hospice setting because t

transportation to a facility that has the appropriate equipment, 

prolonged length of time.

Topical therapy therefore is the therapeutic modality of choice fo

Mid to high-potency (Classes I, II, or III) topical corticosteroid pr

ucts, vitamin D derivatives such as calcipotriol, and vitamin A deriv

can all be tried. Again, regular emollient use is a very helpful adj

Folliculitis

Inflammation of the hair follicle usually indicates an infection of th

AIDS, infections with Staphylococcus aureus are very common but ad

are part of the normal flora in the hair follicle such as Pityrosporum yea

mites (D. folliculorum) can induce a very pruritic process characterize

mation. In many instances, an infectious agent cannot be identified and 

reveals destruction of the hair follicle by a dense eosinophilic infiltrat

folliculitis. It has been estimated that 25% of the pruritic conditions 

Chpt 09 1-17-03.p65 1186
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

Clinical Presentation

S. aureus folliculitis is usually caused by cutaneous spread from 

twice as common in HIV-positive people than in healthy control 

tion can be varied, but typically consists of erythematous follicu

somewhat equally spaced on the skin surface, but may be clustere

in different stages present at the same time, with pustules, crust

inflammation and are very suggestive of a bacterial process. Mono

tules are more typically seen in folliculitis caused by yeasts, whe

individual papules (“juicy” appearance) with signs of aggressive e

gestive of either a parasitic or an eosinophilic process. In case

depending on the degree of inflammation and the depth of penet

painful, erythematous nodule may develop, called a furuncle or b

Eosinophilic folliculitis usually presents when CD4 counts drop 

with urticarial papules usually confined to the upper trunk, face

can uncommonly also be pustular. The course waxes and wanes a

by unpredictable flares. There is usually an associated periph

evated levels of IgE.

Diagnosis

Clinical diagnosis alone is difficult for the untrained care provider

be biopsied and sent for culture and histopathology, specifically 

for different infectious organisms.

Treatment

In the absence of available tissue for histopathologic examinatio

pirically treat based on a “shotgun” type approach. If forced into 

the inaccessibility of a biopsy, coverage for fungal elements, b

Demodex, in addition to treating the inflammatory component

regimen, ketoconazole 2% lotion applied qd to bid, erythromycin 2

without 10% benzoyl peroxide and metronidazole 0.75% lotion a

bacterial and Demodex, respectively. Any non-fluorinated ster

appropriate to control inflammation. In the presence of diagnosti

predominance of either fungal or bacterial or Demodex respons

inflammation, treatment modalities should reflect the histopath

However, in the absence of a biopsy, a “shotgun” approach is n

many situations, the clinical history and appearance of the lesi

rected approach to therapy. Clinically obvious bacterial folliculit

topical antibiotics and benzoyl peroxide combinations. Clindam

well as Erythromycin/Benzoyl peroxide combinations are very use

larger treatments, a benzoyl peroxide wash is helpful. In addi

Chpt 09 1-17-03.p65 1187
188 U.S. Department of Health and Human Services • Health Resources and Services Administ

potential morbidity due to the many possible side effects that a

the immunocompetant host. The potential for liver toxicity, cytop

ness of the skin and mucous membranes, to name a few, make o

attractive therapeutic option in AIDS hospice patients.

If the clinical picture suggests a folliculitis of fungal etiology, keto

poos are helpful. If extensive or recalcitrant to a two-three w

topical therapy, then oral antifungals should be used. Demodex 

treated with topical metronidazole, or permethrins. Often, if a cli

a combination regimen using two or more of the above topical 

clinical remission.

OTHER COMMON INFECTIONS

Bacterial Infection

Bacterial infection most commonly represents secondary penetratio

of barrier disruption due to severe xerosis, eczema, or by direct penetr

organisms, both Strep and Staph genera, are responsible for impetigo 

recurrent cellulitis.

Clinical Presentation

Impetigo

Erythematous, minimally elevated papules covered by hone

crusts. May be limited to one or a few lesions or may be mul

into crusted plaques. Ecthyma is a more localized and clearl

process, presenting with more induration, erythema, and ed

development of a thick eschar that heals with scarring.

Cellulitis

More commonly encountered on the lower extremities, ther

defined patch of erythema surrounding the site of initial pen

bacteria. At that site, pus and crust are often present. Peri

lesion, one may see erythematous streaking, suggesting lymp

bacteria. The involved region is also painful and warmer tha

leg. As a general rule, bilateral lower extremity cellulitis do

Cellulitis is differentiated from erysipelas as follows: Erysipe

indurated, tense lesion with a well-demarcated, elevated bo

commonly occurs on the head and neck region.

Diagnosis

Culture is generally not necessary and typically yields the expect

Sensitivities will be useful, however, in disease that is recalcitran

gate antibiotic resistance profiles.

Chpt 09 1-17-03.p65 1188
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pg, 

lymphadenopathy. The preferred treatment for nonbullous 

penicillin VK 250-500 mg PO q6-8h x 7d, penicillin G-benzath

IM x 1, amoxicillin 250-500 mg PO q8h or 500-875 mg PO q12

ampicillin PO q6h x 7d. For bullous impetigo or culture-prov

cal impetigo either cephalexin 250-500 mg PO q6h x 7d, cefa

PO q12h x 7d, or dicloxacillin 500 mg PO q6h x 7d. In additi

aforementioned antibiotic regimens, practitioners should so

with clean Vaseline or Bacitracin ointment several times per 

individual lesions with antibacterial soap or antiseptic solut

trying to gently remove crusts twice a day, instruct the patie

lesions and to wash hands frequently, and clip fingernails sh

risks of excoriation, self-inoculation, and contagion.

Cellulitis

While penicillin is, in most cases, appropriate for the treatm

cated streptococcal cellulitis, the problem of resistance is ve

this in mind, a penicillinase-resistant penicillin (e.g. dicloxa

PO qid) or first generation cephalosporin (e.g. cephalexin 2

may be used. These also should be kept in mind for Staphyl

However, mild cases of non-resistant Streptococcal cellulitis 

with penicillin V 500mg PO q6h x 10d or penicillin G benzath

x1. If penicillin allergic, then Erythromycin 250-500mg PO q

q8h x 7-10d or azithromycin 500mg PO x1 followed by 250mg 

clarithromycin 250mg PO q12h x 7-10d. For severe cases, pe

IM or IV q4-6h (maximum 24mil U/day) is suggested.

Other interventions besides antibiotics include immobilizati

of the affected area, moist heat compresses, and debrideme

when bullae, abscess or necrosis is present.

Viral Infections

Viral infections tend to run rampant in patients with advanced H

Herpes simplex infections the most commonly seen in this setting, b

reactivation as well as poxviruses and human papillomavirus infection a

Clinical Presentation

Herpes simplex virus

Herpes labialis

Herpes labialis often begins with a prodrome of pain or burn

prior to eruption of a tender, vesicular, erythematous lesion 

days. In advanced HIV infection, the lesions may be chronic

eradicate, often resistant to standard antiviral therapy, and 

Chpt 09 1-17-03.p65 1189
190 U.S. Department of Health and Human Services • Health Resources and Services Administ

of erythema with a cluster of vesicles that later ulcerate. The

painful. In advanced AIDS, the chronic, extensive perianal le

diagnostic challenge (Color Plate 9-6). As ulcers become con

associated patches of erythema larger, they often resemble Ca

and irritant contact dermatitis from chronic diarrhea. Again, 

tion is paramount to accurate diagnosis and treatment becau

agents will not help and topical steroids will make the infecti

Candidal intertrigo usually involves the entire perineum, not s

region, characteristically has peripheral satellite lesions, and 

feature. In addition, chronic diarrhea and incontinence shou

irritation and maceration, but there should not be large regio

unless there is also associated decubitus ulcer. In such cases

swab the ulcer base for viral culture.

Herpetic whitlow

Painful, tender, erythematous patch on the distal phalynx of 

Whitlow is the result of direct inoculation of the finger from 

before AIDS was more commonly seen in health care worker

quence of direct, ungloved contact with a patient’s herpetic 

Varicella zoster virus

Reactivation of the varicella zoster virus (VZV) from the dor

spinal nerves is a painful sequella to AIDS-related immunos

Following a dermatomal distribution, a strikingly erythemat

papules forming a plaque with overlying vesicles is often pre

band-like configuration. The presentation in normal hosts i

significant portion of the rash rarely crosses the midline. H

AIDS group, zoster may be more inflamed and painful and m

nated. Chronic and recurrent forms may also become an iss

may either precede the cutaneous eruption or may continue 

episode as postherpetic neuralgia. The postherpetic neural

significant morbidity, as the intense burning pain can last fo

cutaneous lesions have gone and is often very difficult to tre

this population. Involvement of the tip of the nose signifies i

ophthalmic branch of the trigeminal nerve and heralds a po

emergency, termed zoster ophthalmicus. In AIDS patients r

acyclovir therapy, acyclovir-resistant VZV infection may pres

disseminated form of Zoster. The lesions are warty, hyperke

with or without ulceration or eschar formation.

Molluscum contagiosum

A contagious viral infection previously seen predominantly 

previously benign condition can occasionally have devastat

in AIDS.

Chpt 09 1-17-03.p65 1190
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

and neck, with devastating impact on the patient’s quality o

Complicated

Less frequently, in the immunocompromised patient giant m

ensue with larger papules that appear in a cluster and aggre

fungating plaques (Color Plate 9-7).

Human papillomavirus

Different serotypes of the human papillomavirus (HPV) dictat

arise on the body. Verruca vulgaris, or common warts, are freq

the general population and in AIDS patients. They are difficu

both groups. Condyloma accuminata, or genital warts, flouris

pressed host and may reach very large sizes, presenting as wa

growths in the perineal region. Flat warts do occur in the nor

flourish in the immunocompromised. They appear as groups 

flat-topped, regularly shaped 2 to 4 mm papules that, at times 

appear macular. Condyloma accuminata are generally associa

serotypes 6, 11, 16, and 18. There is a significantly increased 

development of squamous cell carcinoma when the lesions ar

HPV types 16 and 18. Anogenital veruccae are often difficult t

anoscopy and, unfortunately, may cause the most significant m

large growths may partially obstruct the anal canal.

Diagnosis

Most of the aforementioned disorders are diagnosed strictly on c

viral culture and serotyping can be an important tool for not 

clinical suspicion but also for viral sensitivity profiles, because 

mon. If the diagnosis is uncertain, then a simple punch biopsy 

can also aid in diagnosis. A Tzanck smear for HSV can be perform

or fresh ulcers are present. Old, previously unroofed blisters o

Using a sterile scalpel blade and a sterile swab, the intact blister 

base of the blister is aggressively scraped. (Extraction of the bli

cient for the Tzanck smear.) Once the base is swabbed, the cells 

scope slide and the specimen is rapidly fixed and stained in the o

examination looking for multinucleated giant cells. During the s

may be taken from the same denuded blister.

Treatment

HSV

The approach to treating herpes labialis, genital herpes, and 

are very similar. Previous initial therapy utilized acyclovir, a 

regimen that required five daily doses which, in combination 

Chpt 09 1-17-03.p65 1191
192 U.S. Department of Health and Human Services • Health Resources and Services Administ

regimens such as foscarnet should be used for resistant herp

 VZV

For uncomplicated Zoster, the same generalized initial treat

for HSV apply. However, Zoster ophthalmicus and the more 

of generalized zoster require hospitalization and intravenou

ophthalmicus requires emergency consultation by ophthalm

Molluscum

Uncomplicated molluscum is more of a nuisance and cosmet

common in the AIDS population. Although there is no perm

be easily controlled with local destructive methods and imm

agents. The key is not allowing the infection to run rampant

minimal disease can be treated with cryotherapy, electrocau

extract (cantharidine), cidofovir, or the immunomodulator i

cream, applied 3 nights per week. However, giant molluscum 

to all known therapies. Cryotherapy, CO2

 laser, tretinoin and 

acid have all been used, and are generally unsuccessful.7

HPV

Common warts, flat warts, and genital warts are all caused b

of HPV and therefore share many similar therapies. Cryothe

nitrogen should be performed with three cycles of at least 1

followed by complete thaw. A blister should form within 24 

treatment should be repeated approximately three weeks la

extensive local disease, podophyllin can be also be used. Im

shown to be effective in clearing clinical disease as well. HI

individuals usually are infected by more than one HPV-type 

frequently harbor one of the oncogenic types, which places t

for anal dysplasia and anal carcinoma. If a patient has a hist

warts, receptive anal intercourse, or penile or vaginal warts 

partner with penile warts, a Pap smear should be obtained f

canal. If any degree of dysplasia is observed, an anoscopic e

biopsy of suspicious lesions is recommended. In the hospice 

more relevant issues are keeping the lesions at a size that w

bowel movements without discomfort and also monitoring fo

bacterial infection of the vegetating mass. Large and potent

anal lesions must be dealt with surgically. Adequate hygiene

washing the perianal area after bowel movements instead of 

paper, helps prevent secondary bacterial infections.

Fungal Infection

Fungal infection is no more common in AIDS patients than in the ge

character of the infection changes as patients become more immunoc

Chpt 09 1-17-03.p65 1192
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

skin breakdown may also predispose these patients to bacterial superi

which they are ill equipped to handle.

Clinical Presentation

Dermatophytoses

Superficial fungal infections in AIDS patients may be extens

the groin and feet. Tinea pedis (“Athlete’s foot”), tinea crur

and tinea corporis (“ringworm”) all occur with a similar freq

general population, but tinea pedis is the most common der

in AIDS.8

 With all three infections, the lesions may become 

larger, and more resistant to traditional therapies. They may 

atypical clinical features resembling other noninfectious de

problems (Color Plate 9-8).

Thrush

Oral candidiasis, or thrush, occurs in almost all HIV patients 

difficult to cure. In addition to immunosuppression, complic

include a high rate of oral carriage in even healthy patients 

and long-term antibiotic use. Classically, there are white pl

palate, tongue, and gingival area, which can be scraped off t

erythematous, often slightly bleeding base. In the case of lo

infection, it may be difficult to scrape them off. Dysphagia a

all commonly associated complaints. Candida intertrigo oc

in patients with warm, macerated, moist skin and very comm

patients (covered in Skin Problems in the Chronic, Bedridde

198). Candida paronychia is a frequently misdiagnosed con

seen in patients who wash their hands frequently, do dishes 

their hands in cleaning solutions. Periungual erythema, swe

extrusion of pus is a common presentation, and is often misd

bacterial infection. Here, the patient’s history should guide 

treatment options.

Deep Fungal Infections

Presentation varies from fungating nodules and tumors to ul

papulonodular disease. Cryptococcosis and histoplasmosis, 

the skin, may present with multiple, widespread, translucen

papules with a slight central dimple resembling molluscum 

the morphologic variation can be broad.

Diagnosis

Dermatophytes

Tinea can have atypical presentations in these patients, ofte

of the eczemas or even psoriasis. As a rule of thumb, every le

Chpt 09 1-17-03.p65 1193
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presence of septated, branching hyphae. The highest yield i

the peripheral scales on the edge of the advancing lesional b

Thrush

Although the differential diagnosis for white plaques in the 

thrush is largely a clinical diagnosis. A KOH prep may be he

presentation is atypical. Most AIDS patients will have asymp

colonization, so the only use of cultures is for speciation and 

sensitivity. Adherent white plaques on the sides of the tong

patients may represent oral hairy leukoplakia, caused by Ep

infection. Biopsy can definitively differentiate the former fr

carcinoma.

Deep Fungal Infection

Culture is indicated for deep fungal infection. If cryptococc

suspected, India ink stain or Wrights stain may be performe

histoplasmosis takes several weeks to grow.

Treatment

Dermatophytes

For limited disease, topical antifungal preparations should b

Treatment has to be performed for a period of two to three w

symptoms have completely subsided. Oral antifungal agents 

fungal infection is widespread, when it affects a hairy area s

beard, or when nails are affected. Currently available oral dr

vin, fluconazole, ketoconazole, itraconazole, and terbinafine

mind when selecting an oral antifungal agent are the potent

tions with antiretroviral drugs and also with the drugs that a

the cytochrome P450 system. Many of the oral antifungal ag

associated with a significant risk of hepatotoxicity when give

period of time, such as that required for treatment of nail in

Therefore, in patients with a history of hepatitis or other live

options are limited. Ketoconazole’s absorption is reduced by 

is often seen with AIDS, so it should be taken with a cola sof

increase absorption by 50%.

Thrush

In our experience, clotrimizole troches are superior to nysta

swallow, likely because of greater contact time with the oral 

difficult to treat infections, studies have shown that PO fluc

efficacy to itraconazole.9

 The practitioner should keep in m

Chpt 09 1-17-03.p65 1194
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

Cryptococcal infection is the most common lethal mycosis in 

be treated with amphotericin B with fluconazole as seconda

Histoplasmosis should also be treated with amphotericin 0.5 

itraconazole 200 mg PO bid.

Scabies

Infestation with the mite Sarcoptes scabeii var hominis results in a

tion in both the normal host and in the AIDS patient. An investigatio

should always be performed in any patient with a persistent or wides

Keep in mind, however, that there may be significant differences in th

scabies in the immunocompromised host.

Clinical Presentation

Typical Scabies

Multiple small, pinpoint to pinhead sized erythematous papu

intact, but usually are excoriated due to the intense pruritus

affected are the interdigital spaces of the hands, wrists, ante

anterior axillary areas, inframammary folds, periumbilical a

buttocks, and inner thighs. The male genitalia is usually affe

can be seen on the scrotum. The diagnostic clinical finding 

burrows on the skin. They present as a pink papule at the e

tract only a few millimeters in length, often in the interdigit

hand or lateral aspects of the feet. In many cases, the papu

caused by an immune response to the mites and, even when 

in numbers, the affected individuals may still present with w

skin lesions.

Atypical, Crusted, or “Norwegian” Scabies

The incidence of this variant is very low in comparison with 

but higher in AIDS patients than in the healthy population. 

of hyperkeratotic plaques associated with skin thickening an

observed (Color Plate 9-9). Fissuring is common, as is bacte

and even bacteremia. Burrows may not be evident because o

overlying crust. These patients are infested with millions of 

pruritus, if present, is often only minimal. This form of scab

misdiagnosed and, because it is an extremely contagious pro

walking source of infestation for the health care workers an

for prolonged periods of time before patients are correctly d

adequately treated. It should be noted that there have been 

of HIV transmission via scabetic mites passed from patient t

worker.

Chpt 09 1-17-03.p65 1195
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Diagnosis

Identification of the mites, their eggs, or their feces from skin s

diagnosis. The region most fruitful for scraping is a nonexcoria

the burrows. Scrapings can also be performed from under the fin

protected area. Once an adequate sample is scraped onto a mi

mineral oil is placed on the specimen and covered with a covers

the microscope.

Treatment

Scabetic infestation represents a good example of why topical ste

to patients until an exact diagnosis has been reached. Suppres

response around the infection will only help the mite, not the p

estimated life span of the mite outside of human hosts is very shor

patient’s environment, including bed sheets, towels, and persona

worn and are not freshly laundered should all be washed. When

and upholstery should be cleaned. This should be done after th

the recommended treatment. In addition, all intimate contacts 

hold or roommate contacts should be treated simultaneously. H

had direct skin contact with the patient or their bed should al

possible. Topical antiscabetic preparations include permethrin 

lindane 1%, applied to cover the entire body surface once, washe

and repeated 10 to 14 days later when the female mite’s eggs hat

not FDA-approved for this purpose, has shown to be effective as 

ment for scabies in both HIV-positive and HIV-negative individua

crograms (μg) per kilogram of body weight once and repeated 1

This is a good option when compliance is questionable and in ep

tals and hospices. Case reports have noted that for the thick plaq

combination of oral and topical antiscabetic regimens is likely m

crusted scabies, a keratolytic agent such as salicylic acid 3–5% or 

used to facilitate removal of the crusts that harbor thousands of 

the antiscabetic medication. Side effects of ivermectin include e

tional symptoms. It should not be given to young children, pregnant 

mothers.

Kaposi’s Sarcoma

Kaposi’s sarcoma (KS) is the most common tumor seen in patients 

an AIDS-defining illness. More common in homosexual or bisexual m

more common in AIDS patients than in patients immunosuppressed fo

ogy is clearly multifactorial; however, there have been significant stri

cade in understanding the pathogenesis of this tumor. At the heart of t

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Clinical Appearance

The skin is the most commonly affected organ, where this disor

ther a few localized lesions or diffusely (Color Plate 9-10). Any b

with red or purple, hyperpigmented, indurated patches, papules

mors, but there appears to be a higher predilection for the lower 

tend to be oval shaped, be symmetrically distributed, and to foll

the oral cavity, the palate and gingiva are usually involved. Chro

perficial changes such as scaling and crusting and they may even 

Differential Diagnosis

Bacillary angiomatosis, pyogenic granulomas, traumatic ecchym

taneous B-cell lymphoma, angiosarcoma. If the clinical diagno

punch biopsy of the lesion should be diagnostic.

Treatment

Options for treatment vary according to the extent of the disease

development of new lesions, and presence of systemic involveme

for localized cutaneous disease are very different from widesprea

involvement (reviewed in Dezube, 2000 15). Local disease can be 

modalities, including cryotherapy with liquid nitrogen, CO2

 laser 

coagulation, intralesional chemotherapy, surgical excision, elec

therapy, and alitretinoin 0.1% gel applied topically.

Chemotherapeutic options include paclitaxel or the liposomal an

and daunorubicin. These modalities are useful for disseminated, sy

is very effective but has a higher incidence of myelosuppression, 

than the liposomal anthracyclines, which are widely considered f

tic agents in these patients. Radiation therapy is also very effec

vanced, symptomatic, and extensive disease. A radiation sched

fractions per week for a total cumulative dose of 21 Gy has show

burden as soon as 2 weeks after completion of therapy.

The importance of successful antiretroviral therapy cannot be o

shown that HAART dramatically reduces the incidence of new 

crease the size of or even clear existing lesions.16

Drug Eruptions

AIDS patients are at high risk for the development of adverse drug 

sheer number of medications they require as well as their body’s dram

logic milieu. The most critical knowledge for the health care worker ca

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approximately ten times higher than in the general population. 18

Clinical Presentation

Unfortunately, the cutaneous manifestations of adverse drug reac

a morbilliform eruption with widespread erythematous macules 

one of the more common manifestations, urticaria, bullous erupt

lesions, palpable purpura, erythema multiforme, and others are 

Diagnosis

The goal is to be able to differentiate between a primary cutaneou

and a drug-related cutaneous reaction. Here, the timing of the m

opment of rash is critical because most eruptions begin 7-12 days a

For unfamiliar lesions, a biopsy is always the safest route, ma

direct immunofluorescence for immunoglobulin or complement 

performed. This is especially important in the bullous eruptions o

vasculitis.

Treatment

Table 9-3 enumerates the most important indications for discon

cause of an adverse cutaneous reaction.

Apart from discontinuing medications, lesions of erythema mul

significant discomfort may be treated with systemic corticoster

that their use does not prevent progression to the more severe to

Systemic corticosteroid use in toxic epidermal necrolysis is contra

Johnson syndrome is debated. Intravenous immunoglobulin has 

by-case basis to be successful in treating the more severe cutan

cluding toxic epidermal necrolysis.19 However, to date there have 

to prove its efficacy. If the offending medication is absolutely n

may be performed in cases of non-life-threatening adverse react

SKIN PROBLEMS IN THE CHRONIC, BED-RIDDEN PAT

■ Immobilization during the latter stages of AIDS, especially when in t

generates by itself a number of potentially chronic skin disorders. The

ridden patients, who lack any immune function, suffer from not only sk

tion, but also from disorders uniquely associated with increased bod

increased sweating and impedance of the normal sweating mechanism

deals with the diagnosis and management of intertriginous infection

Grover’s disease, which are often seen in such patients.

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Vasculitis Palpable purpura or ne

infarcts, livedo reticula

subcutaneous nodules 

and persistent urticari

Mucous membrane involvement Hemorrhagic erosions 

suggestive of Stevens-J

the deadly toxic epider

presents with generali

Blister formation Diffuse or localized bu

Hypersensitivity syndrome May present as a morb

with severe systemic sy

fever and organomega

and peripheral eosinop

Acute generalized exanthematous pustulosis A diffuse pustular erup

white/yellow pus)

Lupus-like syndrome Malar rash, photosens

other symptoms sugge

erythematosus

Erythroderma A generalized, severe r

skin surface

Angioedema Swelling of the face, li

mucosa. If there is air

becomes a medical em

immediate ventilatory 

Intertrigo

Intertrigo is a general term that describes inflammation and/or in

nous areas, specifically the perineum, inframammary region, axillae, 

in obese individuals. Three major infections—dermatophyte or tinea 

fections, and erythrasma, which is caused by Corynebacteria—all th

areas of the intertriginous spaces and are seen in both the healthy an

Clinical Presentation

Tinea infections classically present with erythematous patches 

slightly elevated, scaling border as the fungus advances at the ou

frequently scalloped and well defined. The scrotum is hardly eve

tions. This is in contrast to Candida infections, which are gene

and erythematous, with the characteristic satellite lesions at th

patch. Erythrasma is much less common than the above but i

because of its clinical similarity and because, as a bacterial infe

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bacterium, other mimicking conditions may also flourish in the p

psoriasis typically affects the extensor surfaces (i.e., knees, elbo

ten appears in intertriginous spaces. Again with an erythematou

with heavy silvery scale, inverse psoriasis may resemble infect

friable bleeding base is revealed from gentle removal of scales, 

considered. Additionally, as AIDS progresses, seborrheic derma

widespread and not uncommonly involves the perineum. Grea

defined, erythematous base differentiates this condition from inv

tious intertrigo. Finally, irritant contact dermatitis is a very commo

setting. As patients approach terminal illness, incontinence and/o

prevalent. This causes tremendous irritation, not dissimilar to dia

accelerating the formation of decubitus ulcers and enhancing bac

Treatment

The treatment of dermatophyte and Candida infections is cover

fections. The treatment for erythrasma is with topical erythro

soaps, including benzoyl peroxide washes. In general, it is critic

and predisposing conditions. Appropriate skin care includes wa

daily or twice daily followed by the use of drying agents such 

diluted acetic acid soaks and lotions. Hydrophobic barrier cream

petroleum jelly or dymethicone- or silicone-containing creams ca

recurrence of the problem. One therapy often used for uncomplic

a compound made of 15 g of nystatin cream, 15 g of 2.5% hyd

pounded in a zinc oxide base. Zinc oxide helps to dry the area

colonization, and the steroid reduces inflammation.

Miliaria and Grover’s Disease

Miliaria and Grover’s disease are the more common heat-related 

patients. Miliaria, or “prickly heat” is a transient condition usually se

summer months and it is related to obstruction of eccrine sweat gland 

was originally described as a transient vesiculopapular eruption occur

50 years old. Chronic forms are not uncommon.

Clinical Presentation

Miliaria cristalina presents with small, clear superficial vesicl

with increased perspiration and inadequate ventilation from tig

Miliaria rubra, or prickly heat, is a very pruritic papulovesicular 

burning or tingling sensation. It is common in the flexural fossae 

Grover’s disease is generally limited to the trunk and presents 

3 mm papules and vesicles. There is usually mild pruritus. Grov

with increased temperature and sweating.

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month course of isotretinoin or PUVA.

Decubitus Ulcers

The bedridden patient in any hospital or hospice environment is at 

skin breakdown. This represents a significant risk in this immunolog

tion because open wounds, chronic diarrhea, and warm, moist environ

for superinfection. The diagnosis and treatment of decubitus ulcers 

rately. (See Chapter 25: Prevention of Skin Breakdown.)

CONCLUSION

■ A careful history and a comprehensive physical examination with rev

tions, medical history, and exposures are all essential to making a rap

potential dermatologic conditions that may arise in the A

immunocompromised patient, it is essential that topical steroids not b

without accurate diagnosis. When in doubt, a simple biopsy and referr

save the patient critical time spent on topical therapies that, through t

only prolong patient suffering.

Chpt 09 1-17-03.p65 1201
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1. Uthayakumar S, Nandwani R, Drinkwater T, Nayagam AT, Darley CR. The prevale

HIV infection and its relationship to the degree of immunosuppression. Br J De

2. Rosatelli JB, Machado A, Roselino AM. Dermatoses among Brazilian HIV-positiv

the evolutionary phases of AIDS. Int J Dermatol 36:729-34, 1997.

3. Munoz-Perez MA, Rodriguez-Pichardo A, Colmenero MA. Dermatological finding

lymphocyte counts in a prospective 3 year study of 1161 patients with human im

predominantly acquired through intravenous drug use. Br J Dermatol 139:33-9, 

4. Majors MJ, Cockerell CJ, Cruz PD Jr. Pruritus in HIV-infected individuals: an alg

review of selected pruritic eruptions. Unpublished data.

5. Sadick NS, McNutt NS, Kaplan MH. Papulosquamous dermatoses of AIDS. J Am 

22:1270-7, 1990.

6. Kaplan MH, Sadick N, McNutt NS, et al. Dermatologic findings and manifestatio

ciency syndrome (AIDS). J Am Acad Dermatol 16:485-506, 1987.

7. Cronin TA, Resnik BI, Elgart G, Kerdel FA. Recalcitrant giant molluscum contag

J Am Acad Dermatol 35:266-7, 1996.

8. Elmets CA. Management of common superficial fungal infections in patients wit

31:S61-3,1994.

9. Vazquez JA. Options for the management of mucosal candidiasis in patients with 

Pharmacotherapy 19:76-87, 1999.

10. Stevens DA. Management of systemic manifestations of fungal disease in patien

Dermatol 31:S64-7, 1994.

11. Meinking TL, Taplin D, Hermida JL, Pardo R, Kerdel FA. The treatment of scabi

N Engl J Med 333:26-30, 1995.

12. Martin JN, Osmond DH. Kaposi’s sarcoma-associated herpesvirus and sexual tra

Curr Opin Oncol 11:508-15,1999.

13. Ensoli B, Barillari G, Salahuddin SZ, et al. Tat protein of HIV-1 stimulates growt

Kaposi’s sarcoma lesions of AIDS patients. Nature 344:84-6, 1990.

14. Mesri EA. Inflammatory reactivation and angiogenicity of Kaposi’s sarcoma-asso

missing link in the pathogenesis of acquired immunodeficiency syndrome-assoc

Blood 93:4031-3, 1999.

15. Dezube BJ. New therapies for the treatment of AIDS-related Kaposi sarcoma. Cu

16. Ledergerber B, Telenti A, Egger M. Risk of HIV-related Kaposi’s sarcoma and no

potent antiretroviral therapy: prospective cohort study. Br Med J 319:23-4, 1999

17. Mitsuyasu R, Groopman J, Volberding P. Cutaneous reactions to trimethoprim-su

with AIDS and Kaposi’s sarcoma. N Engl J Med 308:1535-6, 1983.

18. De Raeve L, Song M, Van Maldergem L. Adverse cutaneous drug reactions in AID

119:521-3, 1988.

19. Sanwo M, Nwadiuko R, Beall G. Use of intravenous immunoglobulin in the treatm

drug reactions in patients with AIDS. J Allergy Clin Immunol 98: 1112-5, 1996.

20. Beall G., Sanwo M., Hussain H. Drug reactions and desensitization in AIDS. Imm

17:319-37, 1997.

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COLOR PLATE 9-3. Nummular eczema

Credit: Ciro R Martins, MD

COLOR PLATE 9-2. Eczema craquele with icthyosis

Credit: Ciro R Martins, MD

COLOR PLATE 9-1. Prurigo nodules

Credit: Ciro R Martins, MD

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COLOR PLATE 9-5. Psoriasis

Credit: Ciro R Martins, MD

COLOR PLATE 9-6. Peri-anal herpes simplex virus

Credit: Ciro R Martins, MD

COLOR PLATE 9-4. Atopic dermatitis

Credit: Ciro R Martins, MD

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COLOR PLATE 9-8. Tinea corporis

Credit: Ciro R Martins, MD

COLOR PLATE 9-9. Crusted scabies

Credit: Ciro R Martins, MD

COLOR PLATE 9-7. Molluscum

Credit: Ciro R Martins, MD

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COLOR PLATE 9-10. Diffuse Kaposi’s Sarcoma

Credit: Ciro R Martins, MD

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Marshall Forstein, MD

INTRODUCTION

■ There are significant direct consequences to the invasion of HIV into 

may present as neurological, neuropsychiatric, and /or psychiatric syn

addition, as the immune system deteriorates, myriad secondary physi

problems can cause additional disturbances of brain function. These pr

and require rapid evaluation and intervention or they may be chroni

often present along with physical complaints. Particularly during pall

attention to disturbances of brain function improves quality of life and 

honor patient wishes about limits of care.

Early involvement of mental health clinicians, particularly psychiatris

differential diagnosis of presenting neuropsychiatric and psychiatric sym

whenever possible. The assessment and treatment of neuropsychiatric 

to both the overall well-being of the patient and to the efficacy of other 

palliative care. In addition to the enormous psychological burden of pr

of physical function, even subtle and subclinical changes in brain fu

affect both quality of life and the ability for a person to participate in 

care. This, in turn, has impacts on family members, loved ones, provide

tive care team itself. (See Chapter 20: Care for the Caregiver.)

Changes in a patient’s mental state, either acute or chronic, throughou

tion must be evaluated using a comprehensive conceptual framework t

medical and psychiatric disorders, as well as those arising from HIV (s

Table 10-1: Differential Diagnosis of Acute and Chronic Me

 through the Course of HIV Infection

• The direct effect of HIV itself on brain tissue and function

(primary HIV neuropsychiatric syndromes)

• The consequences of immune deficiency in the central nerv

opportunistic infections, neoplasms, vasculitis

• The impact of systemic illness on brain function

• Endocrine or metabolic disturbances which affect brain fun

• Effects of antiretrovirals and other medical and psychiatric 

brain function

• Pre-existing (to HIV) neurological and psychiatric disorders

• Neurological and psychiatric disorders that arise after HIV i

• Persistent or intermittent substance use or withdrawal state

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Table 10-3.

Table 10-2: Causes of Change in Central Nervous System (

Type of Manifestation Condition

Acute HIV-1 infection • Viral meningitis

• Ascending polyneuropath

• Encephalitis

Chronic HIV-1 infection • Subclinical cognitive-mot

• Minor cognitive motor dis

• HIV-1 associated dementi

OPPORTUNISTIC INFECTIONS

Viral • Herpes simplex encephal

• Cytomegalovirus encepha

• Progressive multifocal leu

Fungal • Cryptococcal meningitis

Protozoal • Toxoplasma cerebritis

Other • Mycobacterium tuberculo

• Neurosyphilis

Neoplastic disease • Primary CNS lymphoma

• Metastatic disease

• Kaposi’s sarcoma

Systemic/metabolic disorders • Pneumonia ➝ hypoxia

• Anemia ➝ hypoxia, depre

• Addison’s disease

• Thyroid disease

• Hypogonadism

TOXIC DISORDERS

Prescribed • Antiretrovirals

• Antimicrobials

• Antineoplastic agents

• Psychiatric agents

• Anabolic steroids

Non-prescribed • Substances of abuse

• Withdrawal states

• Herbal remedies

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others that might give a clue to the particular problem?

• Are presenting symptoms accompanied by fever? pain? othe

autonomic dysfunction?

• Are there any focal neurological signs or symptoms?

• Have any new medications been started recently, including a

psychiatric medications?

• Is there evidence of substance use by a complete toxic scree

rather than the patient’s own report?

• Are there pre-existing psychiatric symptoms?

Since a patient may be unable to give a complete or accurate history, fa

asked about any unusual behavior or sudden changes in the person’s m

in the patient’s typical behavior or engagement must be evaluated ur

ious patients often come to attention because they are obviously distur

be paid, however, to the withdrawn and quiet patient.

Changes in personality, level of activity or interest in others may sig

bance. Some changes are the direct effect of brain dysfunction, while 

acute psychological distress of a systemic problem. For example, the a

feet due to neuropathy might affect cognition and behavior because of 

that the person is dying. On the other hand, the presence of transvers

ated with HIV-related cognitive impairment.

The first step is to make an accurate diagnosis of one or more disorders t

clinical presentation. The most common psychiatric diagnoses are depr

ders, anxiety disorders, and the neuropsychiatric disorders resulting fro

vous system. Table 10-4 presents a format to use to conduct a complete 

Table 10-4: The Mental Status Exam in Primary Practice

History of psychiatric disorders in patie

Number of psychiatric hospitalizations

History of outpatient mental health tre

History of psychotropic medications use

members (note those deemed effective

History of suicidal ideation or violence 

History of education and performance i

History of occupational functioning; cur

Family/other support

Legal history

Risk behavior history

Elements of the

Complete Psychiatric

History

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NEUROPSYCHIATRIC DISORDERS

■ It is important to remember the following points:

• The spectrum of neurological/neuropsychiatric manifestatio

degree of immunosuppression.

• Psychiatric disorders may pre-exist or result from HIV or bot

• Co-morbidity is the rule, not the exception—multiple patho

CNS often co-exist.

• Few symptoms are pathognomonic.

Behavior: sits quietly, paces, impul

• Attitude: irritable, belligerent, coop

• Speech: slow, rapid, soft, loud, slurr

minimal

Assessment of Insight and Judgment 

• How does the patient understand w

• Does the person attempt to reduce 

• Current use of drugs and medicatio

adherence if on antivirals

• How able is the person to follow thr

Assessment of Mood

• Does the patient feel sad or depres

• Does the patient express any ability 

• Is the patient anxious or irritable?

• Is the patient withdrawn and witho

Assessment of Suicidality

Assessment of Thoughts

A positive response to any of these ques

referral to a psychiatrist.

• Have you ever felt that your though

by another person or that others co

• Do you think that people are out to 

might be a plot against you?

• Do you hear voices, or see or smell 

• Do you ever think that the radio or 

private message from somewhere e

• Have you heard voices tell you to hu

The mental status

examination is done

by observation and

by questioning the

patient.

Chpt 10 1-17-03.p65 1210
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specific cognitive deficits may be assessed most accurately by neurop

real impact on patients is related to their functional status. Changes in 

ity, mood or behavior may be subtle or overt and can be dramatic. Ev

impairments may affect the ability to work and psychological coping.2,

In the untreated adult, HIV-related neuropsychiatric disorders are mo

late-stage illness. The neuropsychiatric syndromes (due to HIV itself in 

(HAD), minor cognitive-motor disorder (MCMD), and subclinical cogn

In all cases, the diagnosis of primary HIV cognitive-motor disorder mu

of exclusion. It has been argued that focusing on minor cognitive-mot

important a focus of treatment than overt dementia because it is more 

Figure 10-1: The Course of Untreated HIV Infection in Adul

Clinical Neuropsychiatric Syndromes

While most primary brain impairment in adults occurs late in the co

possible to rule this out when patients present early with changes in m

10-1.)

Source: Southeast AIDS Training and Education Center. Atlanta, GA: Emory University. 1997.

Available at www.seatec.emory.edu/SEATEC/resources/MEDICAL/spectrum.gif.

Chpt 10 1-17-03.p65 1211
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priate stages. For adults the impact is a loss of function whereas in ch

thrive or achieve some function altogether.

HIV Dementia

There is now evidence that the presence and severity of HIV deme

levels of HIV production in the CNS, as well as with macrophage activ

peripheral blood may not reflect the level of brain vRNA nor the degree 

tion.7-13

HIV dementia is classified as a subcortical dementia and manifests as 

triad of progressive cognitive decline, motor dysfunction, and behavio

symptoms include slowed information processing, cognitive and psycho

lems with verbal memory and new learning. Later on, evidence of diffic

tioning appears, along with visual and spatial difficulties, and apraxia

may look similar to the global cortical dementias. (See Table 10-5.)

Table 10-5: Clinical Signs and Symptoms of HIV-Associated 

Type of Impairment Manifestations

Cognitive • Impaired concentration and a

• Impaired verbal memory (e.g

• Mental slowing

• Difficulty with calculations/ab

• Impairment of visuospatial m

• Lack of visuomotor coordinat

(e.g. eye movement abnormal

• Difficulty with complex task s

LATE:

• Global cognitive impairment

• Mutism

Motor • Unsteady gait or ataxia

• Loss of balance

• Slowed fine motor speed (not

in non-dominant hand)

• Tremors

• Change in handwriting

• Hyperactive DTRs

• Weakness

LATE:

• Seizures

• Decorticate posturing

• Myoclonus

• Spastic weakness

• Frontal release signs

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• Hallucinations

• Delusions

Affective • Apathy, loss of interest in frie

• Irritability

• Mania

Neuropsychiatric Disorders in Adults

Adults typically present with complaints of difficulty with short term 

ing attention and finding words, and feeling slowed down in though

difficulty is a common symptom, other psychiatric disorders and prio

ruled out. (See Table 10-6).

Table 10-6: Differential Diagnosis of Early HIV Dementia in 

• Anxiety

• Depression

• Medication side effects

• Metabolic encephalopathy

• Drug-drug interactions (especially with protease inhibitors)

• Alcohol and other recreational drugs

HIV-infected patients may have mild neuropsychological impairment th

for any specific disorder. It is important to recognize that this may be the 

disease and should be followed closely. In doing so, clinicians must c

such as head trauma, epilepsy, learning disorders, aging, low intellectu

substance use. Deficits due to HIV would be evident as decline from p

HIV infection, thus requiring monitoring of impairment over time. Cogn

conditions would not necessarily be expected to progress if the underly

or in remission, whereas impairment due to HIV would be expected to 

Dementia

While prior estimates of dementia had been reported at 20% to 25% of i

is now thought that the cumulative prevalence of dementia has been r

result of multidrug antiretrovitral therapy.3

 This figure may rise as d

and adherence falls over time. This may be due to the relatively poor pen

into the CNS, leading to incomplete viral suppression, resistance and 

eral blood with drug resistant strains of virus. The blood brain barri

sanctuary for HIV in the CNS, making it impossible to achieve comple

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Criterion Description

1. Acquired abnormality in Cognitive decline verified 

at least two of the following status examination. When 

cognitive abilities (present be obtained from an infor

for more than or equal should be supplemented 

to one month): testing. The cognitive dy

Attention/concentration impairment of work or in 

Speed of processing with impairment not attr

Abstraction/reasoning to severe systemic illness

Visuospatial skills

Memory learning

Speech/language

2. At least one of the following:

Acquired abnormality in motor Abnormality verified by p

function or performance. neuropsychological tests, 

Decline in motivation or emotional Change characterized by 

control or change in social behavior. apathy, inertia, irritability

new-onset impaired judgm

socially inappropriate beh

3. Absence of clouding of consciousness

during a period long enough to

establish the presence of criterion 1.

4. Exclusion of another etiology by Alternate possible etiolog

history, physical, and psychiatric central nervous system op

examination and appropriate or malignancy, psychiatri

laboratory and radiologic tests. depressive disorders), act

acute or chronic substanc

Source: American Academy of Neurology AIDS Task Force. Nomenclature and research case definiti

of human immunodeficiency virus type 1 (HIV-1) infection: report of a working group of the America

Force. Neurology 41:778-85, 1991.

Table 10-8: Risk Factors for HIV Dementia

• High plasma HIV RNA (may not correlate in significant % of 

• Low CD4 count

• Anemia

• Low body mass index

• Older age

• Intravenous drug use

• Constitutional symptoms prior to diagnosis of AIDS

• Co-morbidity with chronic encephalopathy or vacuolar myel

Chpt 10 1-17-03.p65 1214
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tia and MCMD because the latter is a less severe disorder and does no

full dementia. This information may ameliorate a patient’s fear of a co

Table 10-9: Defined Criteria for HIV-Associated Minor Cogn

Probable Diagnosis

(must meet all four criteria)*

1. Acquired cognitive/motor/behavioral abnormalities verif

reliable history and by neuropsychological tests

2. Mild impairment of work or activities of daily living

3. Does not meet criteria for HIV dementia or HIV myelopa

4. No other etiology present

* A possible diagnosis of minor cognitive-motor disorder can be given if criteria 1, 2 and 3 are pr

etiology is present and the cause of criterion 1 is not certain, or (2) the etiology of criterion 1 

incomplete evaluation.

Source: American Academy of Neurology AIDS Task Force. Nomenclature and research case definiti

of human immunodeficiency virus type 1 (HIV-1) infection: report of a working group of the America

Force. Neurology 41:778-85, 1991.

Subclinical Neurocognitive Impairment

The impact of HIV in the CNS may show up in neurocognitive testing 

cant or consistent clinical complaints, signs or symptoms. A patient m

lem with memory, for instance, which might show up on testing but do

ability to function in his or her work or home life. Since such neurocogn

evidence of cognitive deficits in patients without HIV as well, the long-t

findings are not yet clear. Whether such patients are more likely to prog

their viral loads increase and immune systems decline needs to be det

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occupying lesion, e.g., CN

toxoplasmosis, progressiv

• Sensory changes, which m

neuropathy

• Ataxia or changes in gait, 

myelopathy

Laboratory analyses • CBC with differential

• Serum chemistries

• Arterial blood gas in patie

• VDRL, fluorescent trepon

• B12, folate

MRI • To rule out space-occupyi

lymphoma)

Lumbar puncture • To rule out acute infectio

meningitis)

Neuropsychological testing • AIDS dementia rating sca

• Finger-tapping test

• Trail-making test

Source: Adapted from Bialer PA, Wallack JJ, McDaniel JS. Human immunodeficiency virus and 

Medical Patient. Stoudmire A, Fogel BS, Greenberg DB, eds. New York: Oxford University Press, 8

Additional elements may also be necessary for a comprehensive eva

acute change of mental state in a person known to be abusing drugs wo

screening. Likewise, lumbar puncture and imaging studies may help co

as shown in Table 10-11. It must be remembered that co-morbidity is c

occur rapidly, often requiring repeated examinations over time.

Table 10-11: Findings Indicative of HIV-Associated Dement

Cerebral Spinal Fluid (CSF) Findin

• Negative bacterial, fungal, viral cultures

• Negative cryptococcal antigen

• Negative VDRL

• Negative cytology

• Mild lymphocytic pleocystosis in 25%

• Increased proteins in 55%

• Elevated b2 microglobulin> 3.8mg/dl

• Elevated neopterin, sTNFa

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Dementia and minor cognitive motor disorder are always diagnoses o

disease, particularly when CD4 counts are below 200, there are many di

with similar clinical signs, as shown in Table 10-12.18 Table 10-13 illus

characteristics of progressive multifocal leukoencephalopathy and HI

Laboratory and imaging findings are necessary for accurate dia

intervention.

Table 10-12: Major CNS Manifestations of HIV Infection

CD4 

Diagnosis Cells/μl Symptoms Signs 

BRAIN

Neurosyphilis Any

Cryptococcus <200

neoformans

meningitis

HIV-associated <200

dementia (occasionally

higher)

Toxoplasma <200

encephalitis

Headache

Memory loss

Visual disturbances

Dementia

Stroke

Meningeal or

myelopathic signs

Cranial nerve pals

Headache

Neck stiffness

Memory loss

Lethargy

Confusion

Fever

Meningeal signs

Cranial nerve

palsies

Memory loss

Gait disorder

Behavioral change

Dementia

Spasticity

Psychosis

Headache

Confusion

Lethargy

Seizures

Focal weakness

Dementia

Ataxia

Hemiparesis

Aphasia

Visual field loss

Chpt 10 1-17-03.p65 1217
218 U.S. Department of Health and Human Services • Health Resources and Services Administ

yp

PML <200

 (occasionally

higher)

CMV <50

encephalitis

SPINAL CORD

Vacuolar <200

myelopathy

CMV: cytomegalovirus; CSF: cerebrospinal fluid; CT: computed tomography; EBV: Epstein Barr virus

body; MRI: magnetic resonance imaging; PCR: polymerase chain reaction; PET: positron emission 

evoked potentials; SPECT: single photon emission computed tomography; VDRL: venereal disease r

Source: Simpson, DM. Update on neurological complications of HIV (Monograph). Bristol-Meyers 

Simpson DM, Tagliati M. Neurological manifestations of HIV infection. Ann Intern Med 121:769-85

in Ann Intern Med 122:317, 1995.]

Weakness

Aphasia

Visual loss

Focal weakness

Gait disorder

Hemiparesis

Ataxia

Aphasia

Visual field loss

Progressive

confusion

Apathy

Weakness

Dementia

Cranial

neuropathies

Spasticity

Retinitis

Gait dysfunction

Lower extremity

weakness and

stiffness

Urinary dysfunction

Impotence

Spastic paraparesi

Hyperreflexia

Babinski sign

Sensory

abnormalities

Headache

Confusion

Lethargy

Dementia

Hemiparesis

Aphasia

Memory loss

Seizures

Weakness

Chpt 10 1-17-03.p65 1218
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

Clinical

Dementia Prominent Less common

Progression Usually slow (months) Variable

Focal neurologic

findings Less common Characteristic

Radiographic

Subcortical involvement Common Characteristic

MRI/T-1 weighted image Isointense Hypointense

MRI/T-2 weighted image Bilateral symmetrical Asymmetric, mul

hyperintensity hyperintensity

Enhancement No Faint and periph

Infratentorial lesions Uncommon Often (> 30%)

CSF

JCV DNA PCR positive Negative Positive

Source: Adapted from Berger JR, Gallo BV, Concha M. In Berger JR, Levy RM, eds. AIDS and the Ne

Lippincott-Raven Publishers, 1997.

Neuropsychiatric Disorders in Children

CNS deficits in children may be due to the direct impact of HIV; 

insults; or, other environmental problems.20,21 The terms HIV-associate

opathy or HIV encephalopathy, rather than dementia, are used to desi

of HIV on developing neural tissue. Because there are other syndromes

tion, prematurity and maternal drug use, that can present with simila

assessment is necessary to make diagnoses of HIV encephalopathy in 

Three profiles have been described in HIV-positive children: those with

tion, those with compromise of the CNS, and those with encephalopa

encephalopathy is generally observed in the context of immunosupp

other markers of immunologic functioning do not correlate with the de

ment.24

Cognitive deficits in children with compromise of the CNS tend to be m

in children with encephalopathy. Children infected perinatally who exp

immunodeficiency may show pronounced developmental problems. Pro

changes cause impaired brain growth, including motor dysfunction, im

opment, dysprosody, flattened affect, and apathy, as well as abnormal de

HIV-infected children may have impairments in intelligence and lan

expressive language more impaired than receptive. Many HIV-positive 

demic performance, exacerbated by frequent absences due to medica

deficits are common and may correlate with progression of disease.25

Chpt 10 1-17-03.p65 1219
220 U.S. Department of Health and Human Services • Health Resources and Services Administ

improve cognitive motor impairment associated with HIV, only high dos

proven to be clinically significant.26 Table 10-14 shows the relative pene

into the cerebrospinal fluid.27-30

Table 10-14: CSF/Plasma Ratio of Antiretrovirals by Percen

Non-Nucleoside

Nucleoside Analogs RT Inhibitors Pro

Zidovudine 60% Nevirapine 45% Indin

Stavudine 40% Delavirdine 2% Saqui

Abacavir 40% Efavirenz 1% Riton

Didanosine 20% Nelfinavir <5%

Zalcitabine 15% Amprenavir <5%

Lamivudine 10%

Source: Adapted from Brew BJ, Brown SJ, Catalan J, et al. Safety and efficacy of abacavir in AIDS d

XIIth International Conference of AIDS. Geneva, Switzerland (Abstract), 1998; Monteforte A, Musicco 

study of didanosine compassionate use in advanced HIV infection. Eur J Microb Infect Dis 16:135-4

et al. Dideoxycytidine alone and in an alternating schedule with zidovudine in children with symp

virus infection. J Pediatr 117:799-808, 1990; and Thomas SA, Segal MB. The transport of the 

deoxythymidine (D4T), across the blood brain and blood-cerebrospinal fluid barriers. Br J Pharm

The nucleoside reverse transcriptase inhibitors, zidovudine (AZT), stav

(3TC) and abacavir most readily penetrate the blood brain barrier (B

verse transcriptase inhibitors nevarapine and efavirenz may reach inh

the CSF.31 Protease inhibitors are of particular concern as indinavir is t

viral inhibitory concentrations of >95%.32 Currently there are no publ

penetration of newer antiretrovirals such as lopinavir or tenofovir. M

shown that there may not be a correspondence between antiretroviral 

level of HIV activity in the brain. So far, the best predictor of mainta

seems to be decreasing peripheral viral load as much as possible.

The incidence of cognitive impairment has decreased since the 

antiretroviral therapies (HAART), but may be on the rise because of i

sion and increasing viral resistance. Since other AIDS-defining diagnos

era of multidrug therapy, dementia constitutes a higher percentage of 

Immune modulation using calcium channel blockers (e.g., nimodipine

of Tumor Necrosis Factor Alpha (TNFa) (e.g., pentoxifylline), and alpha i

have been studied. There are, however, no clear guidelines to their u

this time.

Psychostimulants, such as methylphenidate, dextroamphetamine, and 

been found to be clinically effective in enhancing attention and execu

information for these drugs appears in Table 10-15. Modafinil, which h

colepsy, has been clinically useful in some HIV patients with fatigu

sleepiness, although there is limited information as to its effect on cog

Chpt 10 1-17-03.p65 1220
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

Some patients respond to one type of stimulant better than 

long-acting preparations are useful in prolonging the effect 

less frequent dosing.

• Clinically, very few drug-drug interactions are seen, and side 

stimulants are usually mild and easily managed.

• Although the following are common dosing patterns, signific

have been used, particularly in patients with pain syndrome

Drug Dosing Commen

Methylphenidate Short-acting

(Ritalin, Concerta, Metadate) 10 to 80mg/day acting (SR): 

Amphetamine: 5 to 60mg Short-acting

dextroamphetamine acting (span

(Dexedrine, Dextrostat;

Dexedrine spansules)

Amphetamine: 10 to 40mg q 6 to 8 hour

combination amphetamine

(Adderall; Adderall XR)

Pemoline (Cylert)* 18.5mg to 148mg Dose 1qd or 

* Concerns about pemoline-induced liver failure necessitate frequent blood tests to evaluate liv

patients with co-morbid HIV and hepatitis C.

Dopaminergic agonists have improved neuropsychological performanc

studies of carbidopa, L-dopa, and selegiline, a monoamine oxidase ty

gested some preliminary benefit. The use of donzepil and tacrine to in

mission may also prove to be of value, but to date there are no studies 

Correction of nutritional deficits in cobalamin (vitamin B12 ) and pyri

boost a patient’s cognitive function and general well-being. Other nutr

may prove to be useful include omega-3-fatty acids, folate, s-adenosylm

The routine workup for a change in mental state should include vitam

Supportive and cognitive-behavioral psychotherapies are effective in ad

eties and fears about progressive cognitive decline. Associated with e

phase of illness, end of life issues always arise, and providers can offer 

antiretrovirals and psychostimulants to maximize cognitive capacity a

Chpt 10 1-17-03.p65 1221
222 U.S. Department of Health and Human Services • Health Resources and Services Administ

to medications, metabolic disturbances, or acute infections. Agitatio

such as hallucinations or paranoia can best be treated with risperidon

oral route of administration is not possible, IV haloperidol (.25 to 1mg) 

helpful in controlling agitation and psychotic features.

Treatment of Cognitive Disorders in Children

There are limited studies of AZT and ddI showing improvement in chil

for the most part, these medications are well tolerated.40,41,42 While ps

been systematically studied in children and adolescents with HIV, ther

rience with them in treating attention deficit disorders in children an

Delirium and the Impact of Medications on Central Nervo

Delirium in the HIV-infected patient can result from acute primary H

consequences of infections, metabolic derangement, medications, and 

cation or withdrawal, and is more likely in the setting of advanced illn

Hypoxemia due to pneumocystis carinii pneumonia may cause an acut

as can uremia secondary to HIV nephropathy or elevated ammonia leve

Table 10-16 lists common side effects of medications used in the care of 

that also must be considered.45

Intoxication or withdrawal from either prescribed or non-prescribed m

out. There can be multiple causes of acute changes in mental status. 

does not improve with treatment for an obvious potential cause, the 

other co-morbid conditions.

Chpt 10 1-17-03.p65 1222
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

confusion, hy

thought inser

Amphotericin B Cryptococcosis Delirium, per

diplopia

b-Lactam antibiotics Infections Confusion, pa

mania, coma

Co-trimoxazole Pneumocystis carinii pneumonia Depression, l

apathy

Cycloserine Tuberculosis Psychosis, so

confusion, tr

seizure, dysa

Didanosine HIV Nervousness

seizures, inso

neuropathy

Efavirenz HIV Nightmares, 

Foscarnet Cytomegalovirus Paresthesias

irritability, h

Interferon-a Kaposi’s sarcoma Depression, w

myalgias, con

Isoniazid Tuberculosis Depression, a

paranoia, im

Lamivudine HIV Insomnia, ma

Methotrexate Lymphoma Encephalopa

Pentamidine Pneumocystis carinii pneumonia Confusion, an

hallucination

Procarbazine Lymphoma Mania, loss o

nightmares, 

Quinolones Infection Psychosis, de

insomnia, de

Stavudine HIV Headache, as

confusion, de

excitability, a

morning awa

Sulfonamides Infection Psychosis, de

depression, h

Thiabendazole Strongyloidiasis Hallucination

Vinblastine Kaposi’s sarcoma Depression, l

Vincristine Kaposi’s sarcoma Hallucination

sensory loss

Zalcitabine HIV Headaches, c

concentratio

depression, s

neuropathy

Zidovudine HIV Headache, m

insomnia, un

restlessness, 

auditory hall

Source: Adapted from Grant I, Atkinson JH Jr. Neuropsychiatric aspects of HIV infection and AI

Kaplan and Sadock’s Comprehensive Textbook of Psychiatry. Philadelphia: Lippincott Williams & 

Chpt 10 1-17-03.p65 1223
224 U.S. Department of Health and Human Services • Health Resources and Services Administ

effects of HIV.46, 47, 48, 49

Table 10-17: Common Clinical Misperceptions Regarding P

Psychiatric Issue/ Clinical Rememb

Disorder Misperceptions Ask Abou

Major depression

Bipolar mood disorder

Psychosis

Delirium

Sexual abuse/assault

history

Anxiety, panic,

agoraphobia

Domestic violence

Suicidal ideation

“Anyone would be

depressed or grieving,”

forgetting biologic

depression

“Depressed mood must

mean depression,”

forgetting bipolar

symptoms

“The patient seems

normal,” forgetting

hallucinations and

paranoia

“The patient is clearly

schizophrenic or

psychotic,” forgetting acute

medical etiologies

“Too personal; may

embarrass or offend”

“Must be drug-seeking;”

“Anyone would be anxious”

“Seems like a nice person”

“May plant the thought in

their mind, provoke it”

Vegetative sy

awakening, d

appetite dist

more than sa

Hypomanic/m

(history of ra

hyperactivity

grandiose pl

Psychotic sym

hear your na

and no one i

ringing?” “E

talking abou

street?”

Distractibilit

dysarthric sp

sustain, focu

misperceptio

muttering

“Were you ev

abused in ch

an adult?” D

Panic sympto

tachycardia 

impairment 

crowded plac

“Is there any

in the past w

unsafe?”

“Have you ev

killing yours

the means?”

Source: Kobayashi J. Psychiatric Issues. In Anderson JR, ed. Guide to Clinical Care of Women w

Department of Health and Human Services, Health Resources and Services Administration, HIV/AI

Chpt 10 1-17-03.p65 1224
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

emotional reaction to a particular situation. Table 10-17 lists some co

this regard.

Mood Disorders

Mood disorders are associated with substance use, impaired quality 

suicide, poor adherence to antiretroviral regimens and increased ri

multiple sexual partners and drug use that transmit HIV.51

Depression

Studies show that depressive disorders are very common but underdia

in HIV infection.52,53 Depressive symptoms increase over the course 

after the onset of AIDS. These increases are not necessarily associate

Depression must be differentiated from many other conditions comm

sented in Table 10-18. Major depression is never a “normal” response to 

must be approached with the same rigor as any other medical illness.

Patients often feel that they are depressed for good reason, or that th

because they are sick. Providers must understand and make clear that 

medical illness that responds well to both psychotherapy and medicat

such as fatigue, trouble sleeping, decreased appetite or sexual drive

also symptoms of HIV-related cognitive disorders. Symptoms of anhed

ness and loss of hope may be helpful in distinguishing depression from 

Depression at the End of Life

Even at the end of life, depression is a disorder that requires treatme

considered a normal response to illness or dying. Patients who are not 

talk about the sadness of leaving others behind, of dying, or of fear of 

patients near the end of life will likely have flattened affect or an inab

ately to loved ones, or might be withdrawn and mute. When in 

psychostimulants may be very helpful in reducing the depression, and i

tion even in the last weeks of life. In the agitated or anxious patient very 

(.25 to 1mg) or olanzapine (1.25 to 5mg) may be a helpful treatment.

Providers must distinguish between depression and grief. While sadnes

conditions, grief is a normal reaction to loss or impending loss. Fur

differently across cultures. Anticipating the loss of function and quality 

ing an impending death, can appear to observers like depression. Grief

panied by powerful and profound affective states and crying, while se

more like an emotional paralysis, with patients often unable to mobil

hopelessness.

Chpt 10 1-17-03.p65 1225
226 U.S. Department of Health and Human Services • Health Resources and Services Administ

Affective Disorders in Children and Adolescents

Rates of psychiatric disorders among HIV-positive children and adoles

lar to those among adults. One study showed 85% had at least one Axis I 

history of psychiatric contact prior to their HIV diagnosis. Among ado

depression according to one study,54 and 25% had major depressive d

distress in another.55 Children and adolescents come to the attentio

internalizing disorders (depression and anxiety) than externalizing d

ioral disorders).56

Dementia

Delirium

Medication-induced,

substance-induced mood

disorders

Less concern with cognitive decline; more 

respond with laughter; worse at night; spe

deficits; CT scan often abnormal

Fluctuating mental status with altered lev

distractibility; inability to focus or sustain 

speech; agitation; medical etiology

Onset with use of: steroids, anticholinerg

anticonvulsants, antiparkinsonians, beta-

sympathomimetrics; azidothymidine, stav

urine toxicology screen; medication histor

TSH, thyroid-stimulating hormone; VDRL/RPR, nontreponemal serolo

Source: Kobayashi J. Psychiatric issues. In Anderson JR, ed. Guide to Clinical Care of Women w

Department of Health and Human Services, Health Resources and Services Administration, HIV/AI

Grief

Adjustment disorder with

depressed mood

Organic mood disorder

mood in a mixed bipolar state)

Onset associated with the loss; responsive 

environment with less sadness or enjoyme

over time; preoccupation with deceased; “

related to deceased such as seeing, being 

rare suicidal intent although reunion fant

Sadness is rarely as profound; little anhed

symptoms; identifiable precipitant; respon

change; suicidal ideation and intent may 

Identifiable agent linked by time; less anh

ness; test for specific medical conditions 

or RPR, CNS evaluation; no family history

Chpt 10 1-17-03.p65 1226
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

hopelessness over the future, fear of themselves or their infected paren

to participate with their peers as “normal” children due to physical or 

Mania

As with depression, rates of mania increase as HIV disease progresses

with early HIV experience a manic episode. Since this is only slightly hi

in the general population, this may reflect the increased risk for infecti

sexuality, poor judgment and/or substance use that are associated wi

ever, as HIV progresses to AIDS, 4 to 8% may have a manic episode.5

advanced disease can be associated with cognitive changes or HIV dem

AIDS-related mania can differ clinically from the true mania of bipolar 

ity, rather than true grandiose euphoria, is the core symptom.60 Com

include the following:

• Decreased sleep, increased activity

• Increased talkativeness, pressured speech

• Evidence of racing thoughts

• Attention to unimportant or irrelevant activities

• Grandiosity or inflated sense of self

• Hallucinations or delusions

• Increased goal-oriented activity

• Psychomotor agitation

• Excessive spending, or sexual activity without good judgmen

The clinical presentation of mania requires emergency psychiatric int

psychotic symptoms are present and judgment is impaired.

Prescribed and illicit use of androgenic and/or anabolic steroids can ca

or hypomania and should be ruled out in the work-up of this symptom. G

have also been associated with increased rates of mania.

Treatment of Mood Disorders

Treatment of mood disorders must be tailored to the individual pati

stances. Although antidepressant medications are commonly prescrib

tive care providers, referral to a psychiatrist should be made when 

significant side effects or does not respond to the psychopharmacolo

cally depressed patients with HIV have been shown to benefit from a 

and from medications to alleviate depressive symptoms.61 Additional st

some types of psychotherapy and medications together may be more 

pression than either one alone.62 Additionally, management of psychot

debilitated, fragile AIDS patient may be difficult and warrant speciali

Chpt 10 1-17-03.p65 1227
228 U.S. Department of Health and Human Services • Health Resources and Services Administ

May also be useful in PTSD Venlafaxine (Effexor XR): 37

Citalopram (Celexa): 10 to 4

Escitalopram (Lexapro): 5 to 

Sertraline (Zoloft): 25 to 200

Fluoxetine (Prozac): 10 to 80

Paroxetine (Paxil): 10 to 50m

Mirtazapine (Remeron): 15 t

Nefazodone (Serzone): 50 to 

HIV-related depression/ fatigue Methylphenidate (Ritalin, M

(with or without MCMD) 10 to 80mg/day; short-acting q 

acting (SR) q 8 to 12 hours

Dextroamphetamine (Dextro

Dexedrine spansules): 5 to 60

q 4 to 6 hours, long-acting (sp

Combination amphetamine (

10 to 40mg/day; Adderall q 6 t

Adderall XR qd

Pemoline (Cylert): 18.5mg to 

dose 1qd or bid ****

Bipolar disorder Lithium carbonate (Lithobid

1800mg, titrated by blood leve

Valproic acid (Depakote): 50

blood levels (50 to 100mg/mL

Gabapentin: 600 to 3000mg/b

and titrate)

Topiramate: 25 to 100 mg/bid

Lamotrigine: 25 to 100mg/bid

Psychotic symptoms Risperidone (Risperdal): 0.5 

(may be useful for agitation Olanzapine (Zyprexa): 2.5 to 

associated with dementia/delirium) Quetiapine (Seroquel): 25 to 

Panic attacks and Imipramine (Tofranil): 25 to 

Obsessive-Compulsive Disorder Sertraline (Zoloft): 25 to 200

Paroxetine (Paxil): 10 to 40m

Fluoxetine (Prozac): 10 to 80

Fluvoxamine (Luvox): 25 to 

Lorazepam (Ativan): 0.5 to 6m

Clonazepam (Klonopin): .05 t

Chpt 10 1-17-03.p65 1228
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

Venlafaxine (Effexor XR ): 37

Insomnia Zolpidem (Ambien): 5 to 10m

Zaleplon (Sonota): 5 to 10mg

Temezepam (Restoril): 15 to 

Trazadone (Desyrel): 25 to 30

Lorazepam (Ativan): 0.5 to 2m

Clonazepam (Klonopin): 0.5 

Alcohol dependence Disulfiram (Antabuse): 250 t

Alcohol withdrawal Clorazepate (Tranxene): 15 t

Opiate dependence Methadone: 60 to 120+mg qd 

Opiate withdrawal Methadone: 5 to 20mg in divi

tapered by 5mg/day***

Clonidine: 0.3mg in three div

increase to 2 mg/day in divide

Table 10-19 provides information about antidepressants commonly u

depression. Older antidepressants such as tricyclics may be effective a

however, they may exacerbate both cognitive impairment and gastroint

result of their anticholinergic activity. Selective Serotonin Reuptake I

fective antidepressants but are often problematic because of sexual si

pressants such as buproprion and venlafaxine are very effective, wit

tions. Bupropion (more activating) and nefazodone (more sedati

Nefazodone must be used cautiously with patients on protease inhibitor

which may raise blood levels 4 to 8 times. Mirtazapine is a sedating an

with antiretroviral medications, and may also stimulate appetite and 

cently approved SSRI, Escitalopram, is reported to have fewer side of 

tion with other drugs metabolized by the P450 cytochrome enzymes, an

of action. So far there are no studies of its use in people with HIV.

Antidepressants should be started at low doses and gradually increas

sufficient doses of medication to achieve a therapeutic level. Raising do

Abbreviations: SSRI-selective serotonin reuptake inhibitors; PTSD-post-traumatic stress disorder

* Must be used with caution in patients on protease inhibitors.

** Use with caution in later-stage illness.

*** Some anti-HIV medications increase levels of methadone, others decrease (see chart on medic

**** Concerns about pemoline-induced liver failure necessitate frequent blood tests to evaluate liv

patients with co-morbid HIV and hepatitis C.

Adapted from Kobayashi J, Psychiatric issues. In Anderson, JR, ed. Guide to Clinical Care of Wom

U.S. Department of Health and Human Services, Health Resources and Services Administration, HI

Chpt 10 1-17-03.p65 1229
230 U.S. Department of Health and Human Services • Health Resources and Services Administ

Because they can present with similar symptoms (poor concentratio

fatigue and/or mental slowing), depression and other mood disorder

from MCMD or HAD. Psychostimulants are well tolerated in the medi

treat symptoms of both depression and cognitive impairment. As depr

pairment often co-exist in advanced HIV, psychostimulants may be use

with an antidepressant.63 Mood may improve significantly in the hypo

female) with correction of the underlying androgen deficiency.64

People with HIV may be particularly sensitive to side effects of antide

low doses and anticipating side effects for the patient increases his or 

medication. It is important to allow a reasonable period of time to 

particular medication and dose.

Psychological support is very important in adherence to antidepressant

Some clinical suggestions in this regard are as follows:

• Start low and go slowly in dosing psychiatric medications. In

according to the half-life and time-to-reach-steady-state to a

therapeutic levels.

• Anticipate side effects, and suggest that most of the time th

subside in time.

• Encourage patient to call health care provider four to five da

medication to report how well it is being tolerated, and wha

are present.

• Dose sedating antidepressants one to two hours before sleep 

initiate sleep. Taking medications right at bedtime does not 

to be absorbed and to reach peak sedating levels.

Treatment for mood disorders in children and adolescents also includ

tions and a variety of psychological and psychosocial interventions. Me

ders in children and adolescents with HIV have not been well studied

used clinically. Individual, group and family therapy are effective in t

HIV in adolescents, such as future goals, intimacy issues and self este

disease, preparation for disability and death may require intensive, mult

Suicide Evaluation

Suicidal ideation must always be taken seriously. Table 10-20 contai

evaluating suicide risk. Attempts increase under the influence of psyc

alcohol and in the midst of a delirium or psychosis.65

Chpt 10 1-17-03.p65 1230
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

It is important to ask specific and direct questions such as the followi

• How are you feeling today?

• Has it ever become so (painful, frustrating, difficult, frighten

thought about giving up? About ending your life? Would you 

doing so? Under what circumstances have you considered th

• Do you currently have any thoughts or plans to hurt yourself

When a patient admits to suicidal ideation, inquire about whether he 

a specific plan to carry it out. Ask about the consequences of doing so

in the patient’s life. Assess whether there is an intent to die, even if th

very lethal to the provider, for example, the patient says he or she wil

not be biologically lethal, but psychologically is intended to end life.

Providers are often reluctant to ask about suicidal ideation. Asking 

ideas in people who do not have those thoughts to begin with. Whe

suicidal ideation, it acknowledges the amount of pain and suffering t

and often feels supportive and caring to the patient. It is also importan

idea of suicide may provide to some a sense of ultimate control when it 

the mind, body, or environment is slipping away. It would be unusua

ences the shock of a new diagnosis of HIV, cancer or loss of function t

life is worth living and under what circumstances. Simply being able t

having ultimate control, and deciding if that is even a possibility, may 

stood and more in control of their lives. Suicidal ideation may also b

depression, undertreated pain, or other co-morbid conditions.

• Previous suicide attempts*

• Depressed mood, mood disorders*

• Family history of suicide or mood disorders*

• Schizophrenia, psychosis (not necessarily command ha

• Organic mental syndromes*

• Intoxication with alcohol*, other substances

• Recent major loss, particularly through suicide

• Preoccupation with death

• Fantasies of reunion through death

• Homicidal rage

• Caucasian race*

*These factors have been documented as risk factors for suicide.

Source: Kobayashi J. Psychiatric Issues. In Anderson JR, ed. Guide to Clinical Care of Women w

Department of Health and Human Services, Health Resources and Services Administration, HIV/AI

Chpt 10 1-17-03.p65 1231
232 U.S. Department of Health and Human Services • Health Resources and Services Administ

patients range up to 40%. However, there is no clear association betwe

ety and HIV status or stage of disease. Diagnosis of anxiety is important 

capacity of the patient to take in information, plan ahead, or adhere t

Health care providers must rule out biological causes—presented in 

symptoms. Once biological causes have been ruled out, it is importan

disorder correctly in order to determine the treatment.

Table 10-21: Differential Diagnosis of Anxiety

Medical causes of anxiety Hypoxia due to respiratory inf

Hypoglycemia

CNS lesions

Hyperthyroidism

Pheochromocytoma

Adrenal insufficiency

Medications

• Antiretrovirals

• Antidepressants

• Psychostimulants (methy

dextroamphetamine)

• Neuroleptics (haloperido

chlorpromazine)

• Antituberculous (isoniazi

• Antihypertensives (reserp

• Sympathomimetics (ephe

phenylephrine, phenylpro

pseudoephedrine)

• Steroids (prescribed for h

for body-building)

• Nicotinic acid

• Thyroid medications

• Theophylline/ aminophyll

• Cold or sinus medications 

Acute withdrawal from substa

Excessive caffeine (coffee, te

Herbal compounds (gingko, g

ephedra, guarana)

Cognitive impairment with an

fear of losing one’s mind

Chpt 10 1-17-03.p65 1232
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Stigmatization

Housing concerns

Child care, permanency place

Disease unpredictability

Loss of control over bodily fun

dependency

Death of another person with 

Fear of death and dying due t

medical status

Generalized Anxiety Disorder (GAD)

Generalized anxiety disorder (GAD) is diagnosed when another specifi

be found and the person suffers from persistent and significant anxie

GAD may or may not be associated with specific life events. Many patie

ing with GAD prior to the diagnosis of their HIV disease, but devel

disabling anxiety disorder as they enter treatment. Likewise, chronic 

mask GAD when they initiate sobriety as a result of being diagnosed wi

with anxiety must always be considered in the differential diagnosis o

Panic Disorder

Panic symptoms can be terrifying to the person and can, in severe 

situations, lead to suicidal ideation and attempts. Many patients are w

lar, neurological, or respiratory disorders before a diagnosis of panic dis

evaluation should rule out alcohol withdrawal, cocaine or other stim

caffeine, arrhythmia, hyperthyroidism, asthma, pneumonia, or the u

that include ephedra, gingko, ginseng, ma huang, or guarana. Signs 

disorder are described in Table 10-22.

Table 10-22: Panic Disorder

Panic Disorder Diagnosed by the following

(1) recurrent panic attacks (

(2) at least one of the attacks 

one month or more of one or m

• Persistent concern about 

attacks

• Worry about the implicati

consequences (i.e. losing 

attack, “going crazy”); or

• A significant change in be

attacks

Chpt 10 1-17-03.p65 1233
234 U.S. Department of Health and Human Services • Health Resources and Services Administ

within 10 minutes:

• Palpitations, pounding he

heart rate

• Sweating

• Trembling or shaking

• Sensations of shortness o

• Feeling of choking

• Chest pain or discomfort

• Nausea or abdominal dist

• Feeling dizzy, unsteady, li

• Derealization (feeling of 

depersonalization (being 

• Fear of losing control or g

• Fear of dying

• Parasthesias (numbness 

• Chills or hot flashes

Agoraphobia includes the following:

• Anxiety about being in pl

which escape might be di

embarrassing) or in whic

available in the event of h

situationally predisposed 

like symptoms. Agorapho

involve characteristic clu

include being outside the 

crowd or standing in line

traveling in a bus, train o

• The patient avoids the sit

restricted) or else endure

anxiety about having a pa

symptoms, or requires th

companion.

• The anxiety or phobic avo

accounted for by another 

Obsessive-Compulsive Disorder (OCD)

About 2% of the general population have a lifetime prevalence of OCD 

current and intrusive thoughts (obsessions) and/or behaviors (comp

duce the obsessional thinking. People with HIV may obsess about CD

effects of medications, physical symptoms, weight loss or change in b

sions may lead to requests for repeated tests, or intense concerns abou

physical signs.

Chpt 10 1-17-03.p65 1234
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

reactions to medications can precipitate an increase in PTSD symptoms. 

with increased risk-taking behavior, depression, self-imposed isolation

towards others, including medical personnel, leading to disrupted care an

with providers and poor adherence to medication regimens and clinical 

Treatment Considerations

As with most psychiatric disorders, the treatment of anxiety disorder

both pharmacotherapy (see Table 10-19) and psychotherapy. For short

toms of anxiety, benzodiazepines (BZs) may be used until psychotherap

re-establish coping mechanisms or the patient can learn behavioral tec

toms. Benzodiazepines that are particularly useful in HIV are lor

temezepam, as they have short half-lives, hence less accumulation an

be important drug interactions between these agents and some antiretr

is best avoided because of its very short half-life, and may interact wit

Benzodiazopines are often the only immediately effective medications 

may help engage a person in treatment. Benzodiazepines should, how

substance abusers, because of the risk of dose escalation, dependence a

with a history of substance abuse, BZs must be used cautiously, with c

frequent and limited prescriptions, and attention to the risk of rela

clinical suggestions for prescribing medications that have potential to 

Table 10-23: Clinical Management of Medications with Pote

Establish a written contract regarding how medications will be us

what circumstances medications may be withheld or withdrawn.

• Prescriptions will be written initially for one week (or less if 

with refills as needed.

• Only one provider will write prescriptions (or a designee wh

• Pills that are lost or stolen will not be replaced.

• Toxic screens may be performed spontaneously.

• Medications will not be prescribed if the patient is high.

• Medications must not be shared or sold to others.

• Patient must be in some active relapse prevention or recove

Psychological counseling or group therapy to address use of controll

mandated as part of the management of patients with substance abu

anyone concerned about using controlled substances as part of his or 

Chpt 10 1-17-03.p65 1235
236 U.S. Department of Health and Human Services • Health Resources and Services Administ

to continue the medication. All of the SSRIs as well can cause significan

tinal side effects sufficient to cause patients to be non-adherent. Antic

and starting with lower than typical doses may help alleviate these pro

to accommodate more easily to the medications.

Adding buproprion to a regimen of other antidepressants to help count

may enhance adherence. However, buproprion alone is not usually su

and is stimulating, so caution must be used in adding it into the regi

Using long-acting (SR) formulations, and simply anticipating the pote

comfort patients enough for them to try tolerating the medications. Bu

for GAD but requires several weeks of bid-tid dosing to be effective.

Medications which are most effective in treatment of OCD include 

fluvoxamine, sertraline, and fluoxetine. These are typically required in 

depression. Anafronil, strongly anticholinergic, is effective for OCD but 

person with HIV.

The SSRIs and some mood stabilizers may be useful for diminishing the 

associated with PTSD.

Cognitive behavioral therapy may be particularly useful in addressing 

thinking, irrational thinking, and maladaptive behavior. Specific tech

ticular anxiety syndromes, short-term psychoeducational groups, indi

ing therapy groups all may be useful in reducing anxiety symptoms.

Anxiety Disorders in Children and Adolescents

Anxiety symptoms and disorders occur more frequently in HIV-positiv

dren.68,69 Anxiety in children may focus on life span, how they contrac

cerns. Ruminations about death may be excessive and disabling. Physi

shortness of breath, gastrointestinal symptoms, or neurological proble

concerns. The extent to which psychological functioning is affected v

and developmental stage of the child.

As in adults, treatment includes anti-anxiety medication and psychot

are used for long-term anxiety and BZs for short-term, situation anxi

use deep breathing exercises, progressive muscle relaxation and gui

symptoms and provide some sense of mastery to children feeling out o

and bodily functions.

Chpt 10 1-17-03.p65 1236
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Conduct disorders and substance abuse are common among HIV-posi

ment must be specialized to reduce psychiatric morbidity and decrea

behaviors. (See Chapter 11: Substance Use Problems.)

Sleep Disorders

Sleep disorders are common and distressing, and exacerbate other s

HIV such as fatigue, cognitive impairment, memory loss, decreased w

ished coping capacity, and reduced social interaction.72,73 Sleep distur

poor adherence, failure to engage in treatment, relapse of substance u

medicate, poor impulse control and impaired judgment. Treating sleep 

HIV is not only helpful to the patient in terms of reducing fatigue, but 

ment alliance.

In HIV, sleep disturbance is marked by shorter total sleep time, lon

reduced sleep efficiency, more frequent awakenings and more time sp

sleep deprivation becomes more significant as illness progresses and 

cline.

Sleep pathology has been associated with growth hormone dysregulat

sociated with advanced disease, may be related to elevated levels of TN

nosis of sleep disturbance appears in Table 10-24.

Table 10-24: Differential Diagnosis of Sleep Disorders in HIV

• Primary insomnia

• Primary hypersomnia

• Narcolepsy

• Circadian rhythm disturbance

• Parasomnias

• Major depressive disorder

• Generalized anxiety disorder

• Adjustment disorder with anxious mood

• Mania

• Delirium

• Alcohol/substance abuse

• Caffeine

• Acute stress of hospitalization or bereavement

• Pain

Chpt 10 1-17-03.p65 1237
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ppg p

• Small bedtime snack

• Relaxation training, sound machine or tapes

• Psychotherapy for stress

• Treatment of underlying psychiatric disorder

• Treatment of pain

Providers often fear overmedicating sleep disorders. Although habitua

tions occurs often, the potential for addiction is rare. Pharmacologic 

turbance are discussed in detail in Table 10-25.

Table 10-25: Pharmacologic Agents Used for Sleep Disturb

Agent Dosing Side Effects 

Temezepam 15 to 30mg at Amnestic effect Hab

(Restoril) hs 30 min. Add

before sleep Half

Add

Lorazepam .5 to 2mg at hs Amnestic effect Add

(Ativan) 30 min. before Habituation common Add

sleep

Zolpidem 5 to 10mg at Rarely causes sleepwalking Sho

(Ambien) hs 15 to 30 Amnestic effect possible No a

min. before Pre

sleep Safe 

Add

Zaleplon 5 to 10mg at Rapid onset, very short Very 

(Sonata) hs 15 to 30 May not increase May 

half-life min. before sleep time mid

sleep hou

slee

No s

Trazodone 25 to 400mg at Sedation in AM Rar

(Desyrel) hs, may need Ant

1 to 2 hrs prior Hel

to sleep to slee

reach peak No h

effect

Nefazodone 10 to 150mg Sedation Cau

(Serzone) at hs inhi

(esp

No s

Chpt 10 1-17-03.p65 1238
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

(Pamelor) blocking Bloo

Use

Doxepin 10 to 50mg Sedation May 

(Sinequan) at hs Anticholinergic alpha asym

blocking Use

Confusion in medically ill

Amitriptyline 10 to 100mg Sedation May 

(Elavil) Anticholinergic alpha asym

blocking Use

Confusion in medically ill

Antihistamines 10 to 50mg Sedation in AM May 

(hydroxyzine, at hs Anticholinergic effects anx

diphenhydramine) Confusion in medically ill init

Not 

long

Substance Use Disorders

Substance use disorders complicate the psychiatric diagnosis and 

tients with HIV. (See Chapter 11: Substance Use Problems.) Patients 

HIV, psychiatric disorder, and substance use are at increased risk for 

adherence to medical treatments and increased psychological distr

morbidity and mortality.

Substance-using patients, including those receiving methadone mainte

have high rates of prior psychiatric morbidity and suicidal ideation.76 

abuse and psychiatric disorders should be routine.

Psychiatric Treatment of HIV-Positive Substance Users

The diagnosis and treatment of drug users with HIV is complicated 

ropsychiatric disturbance. Acute and chronic effects of alcohol and sub

done, head trauma, and HIV itself can each and in combination cause 

impairments. Problems secondary to past trauma or substance use ca

current use and HIV neurocognitive effects by serial assessments. Past 

abuse would not continue to cause increasing CNS impairment. Cur

infection, or HIV related cognitive impairment would continue to show 

over time.

There are few studies to show the safety or efficacy of pharmacological 

disorders in substance-using patients with HIV. Safety, abuse potentia

must all be considered when prescribing medications for cognitive 

Likewise, the capacity for adherence to antiretrovirals often impacts 

continue anti-HIV medications.

Chpt 10 1-17-03.p65 1239
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the substance abuse or psychiatric disorder independently or in seque

to be effective in stabilizing patients with co-morbidity. Harm reductio

nence programs are not working, may offer an opportunity to keep p

ment.

The use of antidepressants and anti-anxiety agents in substance-using 

with difficulty. Substance users are usually impatient for a response to 

preferring the rapid onset of action of BZs rather than buspirone or a

may be delayed or diminished by current substance use. Efforts shoul

HIV-positive substance user in both drug treatment and psychiatric ca

tients with untreated psychiatric disorders may be less able to enro

treatment program.

The treatment of substance abuse in patients with HIV is often more c

infected substance users. Concerns about illness, depressed mood, ho

ideation often impede progress in drug abuse treatment, requiring a h

Inpatient detoxification may be necessary for medically ill HIV-positive 

drawal from substances may precipitate relapse with serious potent

medical stabilization and detoxification, treatment is geared to main

the incidence of relapses. Cognitive impairments and psychiatric distr

within a few weeks of detoxification.

Retention in substance abuse programs may be enhanced by early tre

chiatric disorders, which may be precipitants for relapse. Methadone m

essary for some opioid abusers to stay clean long enough to engage in 

done must be monitored carefully, with increases and decreases in d

with medications occur. Nevirapine and rifampin may increase the el

requiring increased dosing to avoid opioid withdrawal. Methadone itse

centrations of ddI, d4T, and AZT. Table 10-26 presents relevant medicati

done must be maintained even when additional narcotics must be used 

maintenance provides for many patients a stablization of the narcoti

more consistent HIV and psychiatric care.

In addition to intensive outpatient treatment, adjunctive pharmacol

disulfuram for alcohol dependence and naltrexone for opioid and alcoh

patients manage cravings and enhance participation in 12-Step and d

Disulfuram is given in doses of 250 to 500mg per day, and naltrexo

disulfuram is an aversive drug, creating intense nausea and vomitin

naltrexone requires abstinence from opioids for seven to 10 days prior 

avoid precipitating an acute opioid abstinence syndrome.79 It is partic

that naltrexone must not be used in patients who are treated with nar

control. Clonidine has also been used to treat the effects of opioid wit

Chpt 10 1-17-03.p65 1240
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p

Clomipremine Methadone Fluvoxamine(+

Clozapine Mirtazapine

Fluvoxamine Zolpidem

2C9 Ritonavir* (+

Fluoxetine Fluoxetine (+) 

Paroxetine 

2D6 Ritonavir* Ecstacy (MDMA) Ritonavir* (+

Nelfinavir* Olanzapine Indinavir* (+

Indinavir* Paroxetine Cocaine (+++

Amphetamines Perphenazine Fluoxetine (++

Clozapine Risperidone Methadone

Codeine Sertindole Paroxetine (+

Fluvoxamine TCAs Perphenazine

Mirtazapine Thioridazine Sertindole

Venlafaxine Sertraline (++

3A family Amprenavir* Clomipremine Amprenavir* 

Ritonavir* Clonazepam Indinavir* (+

Nelfinavir* Diazepam Nelfinavir* (+

Saquinavir* Imipremine Ritonavir* (+

Indinavir* Midaazolam Saquinavir* (

Nevirapine† Nefazodone Efavirenz† 

Alprazolam Pirnozide Fluvoxamine (

Buspirone Sildenafil Nefazodone (+

Carbamazepine Trazodone Sertindole

Citalopram Triazolam Thioridazine

TCAs=tricyclic antidepressants.

*Protease inhibitor

†

Non-nucleoside-analogue reverse transcriptase inhibitor

Notes: Antiretroviral drugs are in italics, +, ++, and +++ represent relative inhibitory potential.

Source: Gillenwater DR, McDaniel JS. Rational psyhcopharmacology for patients with HIV infection 

1: 28-34, 2001. Reproduced by permission.

Chpt 10 1-17-03.p65 1241
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Cognitive changes associated with chronic psychotic illness may confo

related cognitive impairment, especially during the acute phase of psyc

must understand their own preconceived notions about psychiatric p

acute phase of a psychotic or manic illness it may be difficult for patien

engage in their treatment, the same patients may become quite able 

antiretroviral regimens. Patients who have been adherent to their psyc

likely to adhere to antiretroviral treatments as well.

Antiretroviral medications, however, should never be started in the acu

mood disorder. Every patient should be offered the same opportunity t

the medications work, why adherence is so crucial, and why taking p

important to help minimize an adherence failure. A low threshold fo

tion will minimize the impact of medication lapses and reduce the cha

monitoring of medication side effects, strategies to enhance adherenc

drug treatment programs may be required to provide the best medic

serious co-morbid disorders. A case management approach with an in

dressing medical, psychiatric and substance use can be helpful.

Patients who have suffered from a serious mental illness may express 

about HIV. Periods of hopelessness and feelings of contamination an

come prominent and require intensive psychiatric intervention. Suic

Delusions about the nature of HIV infection, sexual anxieties, and paran

cate the treatment relationship. Reducing psychosis and enhancing c

portant goals of treatment.

Psychopharmacologic treatment is effective in treating psychosis in th

Patients with manic psychosis showed more improvement tha

schizophreniform psychosis, and positive symptoms responded more re

toms. Anti-anxiety agents, antidepressants and mood stabilizers can 

agents. Two case reports suggested that catatonia responded to loraze

Personality Disorders

It is important for providers to recognize serious character patholo

the treatment of HIV. Compared to uninfected patients, those with H

personality disorders in the range of 19% to 37%.84 Borderline and histr

be the most common.85,86 Those personality disorders found among pe

ated with increased rates of psychiatric symptoms, injection drug use, 

tive coping mechanisms.87,88

Essentially, character pathology is syntonic to the individual but prob

him or her. The most serious character disorders in terms of complicat

Chpt 10 1-17-03.p65 1242
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tency and intractability of the behavior regardless of the external env

may exhibit some traits that seem to be components of their basic pe

only under extreme duress. Patients with cognitive impairment who a

trouble completing automatic tasks, patients in pain, and patients int

from either substances of abuse or prescribed medications are particul

problematic behavior which usually resolves when the underlying pr

dressed. Social stressors that often complicate treatment relationshi

or unstable living situations, unstable support systems, rejection from 

relapsing criminal or drug related behaviors.

A provider’s reactions to a patient’s character pathology may include 

doning or withdrawing care, impulses to limit access to the provider, or 

with the patient. These emotional reactions to a patient should alert t

hood that the patient may have a difficult character disorder.

While each type of character disorder has particular defense mechani

(the inability to acknowledge or believe something; e.g., “I can’t infec

don’t have HIV”), projection (putting onto others what one is feeling or 

hate me”), and splitting (telling different things to different providers 

ing each provider or getting one provider to believe that another is b

incompetent). Lying, or confabulating, to acquire, for example, incre

common. The fear of abandonment often provokes in the patient an 

unwillingness to admit any improvement for fear the provider may w

level of involvement. Projective identification (feeling what a patien

providers to think something is wrong with themselves, instead of ide

projection onto them by a patient.

People with character disorders are also vulnerable to psychotic, moo

and have rates of substance abuse at least comparable to the gener

often may find that granting requests made by such patients provokes 

Errors in treatment can follow from either withholding appropriate tre

a request in order to end more quickly an encounter with the patient.

Communication with Other Providers in Personality Disor

Unless there is constant communication among members of the palliat

splitting will wreak havoc on the team’s effectiveness. When a patient 

member of the team to another member (reporting what was said o

imperative. The provider should never rely on the patient to convey in

While no specific psychotherapeutic technique has been shown to 

personality disorders in HIV, some clinical guidelines may be helpfu

psychiatric syndromes may be present along with personality disorde

appropriately.

Chpt 10 1-17-03.p65 1243
244 U.S. Department of Health and Human Services • Health Resources and Services Administ

Establish and identify the treatment team and have the pati

for free and unrestricted communication among ALL provid

same system and outside (e.g., methadone treatment progra

managers, housing authority staff).

• Establish concrete treatment goals that are reasonable and 

ated at specified time intervals.

• If at all possible, establish an agreement regarding pain man

the need for pain treatment actually begins. Write a pain ma

contract with rules spelled out regarding refills, how doses w

and increased, which meds will and will not be used.

• Set limits on refilling prescriptions, identify which provider 

for which medications, and who will be covering when the p

is away. Also set limits on how and when patients should acc

care provider vs. their mental health provider, person on cal

services.

• Establish rules of behavior for the clinic’s entire patient pop

what behavior will not be tolerated and enforce the rules fai

individual variation. Have the limits for behavior clearly spe

approved by a consumer advisory board or patient constitue

• When a patient is admitted to the hospital for medical care 

establish contact with the treatment staff to discuss rules re

setting, making goals clear and responding to patient reques

• Provide a space for clinicians to share feelings and thoughts 

patients. Knowing that one is not alone in having trouble wi

patient can be comforting and prevent acting out on the par

HIV-Associated Syndromes with Psychiatric Implications

Several HIV-associated syndromes such as wasting, fatigue, sexual d

psychiatric implications. As with sleep disturbance, treating complain

patients and that affect cognitive functioning will increase patient ad

build a therapeutic alliance between patient and provider. Pain and fa

where in this guide. (See Chapter 4: Pain and Chapter 5: Constitution

Wasting syndrome and sexual dysfunction are often associated with imp

of being defective, and body dysmorphia. These feelings can lead to o

behaviors. Testosterone replacement may be beneficial in these settin

may improve libido, it may not address all sexual dysfunctions. Unde

Chpt 10 1-17-03.p65 1244
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

eties, and couples therapy may enhance both sexual function and adap

function.89

PSYCHOLOGICAL AND PSYCHOSOCIAL ISSUES

■ Even with the advent of multidrug therapy, the future of most peop

Living with such a tremendous burden of unpredictability often affects 

tain emotional stability and retain control over their lives. Many issu

course of HIV infection. Each change in medical status, every blood tes

nition of a new change in mental or physical function can create enorm

individual and the people in his or her life.90

Primary care providers are increasingly faced with complex medical a

portance of mental health and practical support to help patients meet 

be overstated. All too often, medical providers do not see the need f

understand the contributions that mental health clinicians can make 

may convey that bias unwittingly to patients. Early involvement of m

treatment of the HIV- infected patient allows the development of a rela

crises from becoming disruptive to the care of the patient or the medi

Table 10-28 lists some of the most important issues facing people ove

infection. Two of the most emotionally difficult issues for many patient

ment for minor children, and creating advance directives.

Chpt 10 1-17-03.p65 1245
246 U.S. Department of Health and Human Services • Health Resources and Services Administ

ever, it is best to begin discussing all of these issues early in care.

Early in HIV Diagnosis

• Adjusting to new diagnosis of HIV seroconversion: acute vs. c

tional responses (fear of imminent death, guilt of infecting o

tion of existing psychiatric conditions, acute suicidal ideatio

• Disclosure to others; informing intimate contacts, partners a

• Adapting safer sexual and drug using behaviors

• Accessing appropriate HIV medical and psychiatric care

• Assessing substance use and need for detox, treatment, met

maintanence

• Accommodating to medical evaluation and assessment of lev

of illness (lab results, etc.)

• Establishment of health care proxy; defining those involved 

patient

Middle Phase

• Accommodating work and family needs to physical and emot

illness

• Dealing with learning about the nature of the illness and the 

treatments

• Adherence issues

• Decisions about working, going on disability, back-to-work is

productive

• Maintaining relationships and managing normal developmen

context of the uncertainty of the progression of illness

• Dealing with untoward effects of illness and/or treatment; e

side effects, lipodystrophy syndrome and body image, fatigue 

Later Phase

• Permanency planning issues

• Advance directives

• Existential issues; e.g., the meaning of one’s life, hope versu

concerns and death anxiety, “rational suicide”

• Decisions about withdrawing care at the end of life

• Preparations for death

Chpt 10 1-17-03.p65 1246
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

Particularly in cases where there are difficult family relationships, m

lent about having to place their children with family members they don

their children.

Providers can support parents with HIV by acknowledging that perm

ning is a very painful process that takes time and continued reflectio

often involves wavering back and forth from one decision to another. H

lish a working relationship with a mental health provider before perm

must be addressed can make it easier for them to deal with such powe

do arise. For patients, trying to establish a strong, trusting relationship 

in during a crisis is very difficult. With a relationship built early in 

parent, a skilled mental health clinician can raise issues of permanen

acute fears and denial set in when a medical crisis occurs.

Another difficult issue for HIV-infected people is the establishment of 

Chapter 18: Legal and Financial Issues.) Psychologically this requires 

edge that life is finite and death may be imminent. Again, a relations

provider can provide a safe place for the patient to explore fears of dyi

a patient to think about the quality of life near the end of life is bes

ongoing relationships with both a primary provider and a mental hea

gether to explain the medical details and the emotional component

process.

Chpt 10 1-17-03.p65 1247
248 U.S. Department of Health and Human Services • Health Resources and Services Administ

1. Wilkie FL, Goodkin K, Eisdorfer C, et al. Mild cognitive impairment and risk of m

J Neuropsychiatry Clin Neurosci 10:125-32, 1998.

2. Heaton RK, et al. Neuropsychological impairment in human immunodeficiency 

for employment. Psychosomatic Medicine 56:8-17, 1994.

3. Grant I, Heaton RK, Elllis RO, et al. Neurocognitive complications in HIV. Prese

International Conference on AIDS. Geneva, Switzerland (Abstract), 1998.

4. Goodkin K, Baldewicz TT, Wilkie FL, Tyll MD. Cognitive-motor impairment and 

Psychiatric Annals 31:37-44, 2001a.

5. Goodkin K, Baldewicz TT, Wilkie FL, Tyll MD, Shapshak P. HIV-1 infection of the 

approach to its neurophysiology and therapeutic prospects. Psychiatric Annals 

6. Haas DW, Spearman P, Johnson B, et al. Discordant HIV-1 RNA decay in CSF ver

initiation of antiretroviral therapy: a prospective ultra-intensive CSF sampling s

Retroviruses and Opportunistic Infections, Chicago (Abstract 405), 1999.

7. Childs EA, Lyles RH, Selnes OA, et al. Plasma viral load and CD4 lymphocytes p

dementia and sensory neuropathy. Neurology 52:607-13, 1999.

8. Cunningham P, Smith D, Satchell C, Cooper DA, Brew BJ. Evidence for indepen

inhibitor (RTI) resistance patterns in cerebrospinal fluid (CSF) compartment. 

Geneva, Switzerland (Abstract 32284), June 28-July 3, 1998.

9. Inkina N, Price RW, Barbour J, et al. HIV-1 compartmentalization and discordan

plasma. 6th Conference on Retroviruses and Opportunistic Infections, Chicago (

10. McArthur JC, McClernon DR, Cronin MF, et al. Relationship between human im

associated dementia and viral load in cerebrospinal fluid and brain. Ann Neuro 

11. McClernon DR, Lanier R, Feaser P, et al. HIV in the brain: RNA levels and patte

Neurology 57:1396-401, 2001.

12. Swindells S, Zheng J, Gendelman HE. HIV-associated dementia: new insights in

therapeutic interventions. AIDS Patient Care STDS 3:153-63, 1999.

13. Zink WE, Zheng J, Persidsky Y, Pouekotva L, Gendelman HE. The neuropathoge

FEMS Immunol Med Microbiol 26:233-41, 1999.

14. Masliah E, Ge N, Mucke L. Pathogenesis of HIV-1-associated neurodegeneration

67, 1996.

15. Simpson DM. Human immunodeficiency virus-associated dementia: review of pa

treatment studies of zidovudine therapy. Clin Infect Dis 29:19-34, 1999.

16. American Academy of Neurology AIDS Task Force. Nomenclature and research 

neurological manifestations of human immunodeficiency virus type 1 (HIV-1) in

group of the American Academy of Neurology AIDS Task Force. Neurology 41:7

17. Bialer PA, Wallack JJ, McDaniel JS. Human immunodeficiency virus and AIDS. 

Greenberg DB, eds. Psychiatric Care of the Medical Patient. New York: Oxford 

18. Simpson DM, Tagliati M. Neurological manifestations of HIV infection. Ann Int

[Published erratum appears in 122:317, 1995.]

19. Berger JR, Gallo BV, Concha M. In Berger JR, Levy RM, eds. AIDS and the Nerv

Philadelphia: Lippincott-Raven Publishers, 1997.

Chpt 10 1-17-03.p65 1248
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

Gendelman H, Lipton S, Epstein L, Swindells S, eds. Neurological and Neurops

HIV-1 Infection. Philadelphia: Chapman and Hall, 1998.

23. Wolters PL, Brouwers P. Neurodevelopmental function and assessment of childr

In Zeichner S, Read J, eds. Handbook of Pediatric HIV Care. Philadelphia: Lip

Williams, 1999.

24. Pavlakis SG, Frank Y, Nocyze M, et al. Acquired immunodeficiency syndrome an

system. Adv Pediatr 41:427-51, 1994.

25. Frank EG, Foley GM, Kuchuk A. Cognitive functioning in school age children wi

virus. Percept Mot Skills 85:267-72, 1997.

26. Sidtis JJ, Gatsonis C, Price RW, et al. Zidovudine treatment of the AIDS dement

placebo-controlled clinical trial. AIDS Clinical Trials Group. Ann Neurol 33:343

27. Brew BJ, Brown SJ, Catalan J, et al. Safety and efficacy of abacavir in AIDS dem

at the XIIth International Conference of AIDS. Geneva, Switzerland (Abstract), 1

28. Monteforte A, Musicco M, Galli M, et al. Italian multicenter study of didanosine 

advanced HIV infection. Eur J Microb Infect Dis 16:135-42, 1997.

29. Pizzo PA, Butler K, Balis F, et al. Dideoxycytidine alone and in an alternating sc

children with symptomatic human immunodeficiency virus infection. J Pediatr 

30. Thomas SA, Segal MB. The transport of the anti-HIV drug, 2',3'-didehydro-3'-deo

the blood brain and blood-cerebrospinal fluid barriers. Br J Pharmacol 125:49-

31. Enting RH, et al. Antiretroviral Drugs and the Central Nervous System. AIDS 1

32. Martin C, Sonnerborg A, Svensson JO, Stahle L. Indinavir-based treatment of H

efficacy in the central nervous system. AIDS 13:1227-32, 1999.

33. Fernandez F, Adams F, Levy JK, et al. Cognitive impairment due to AIDS-related 

psychostimulants. Psychosomatics 29:38-46, 1988.

34. Holmes VF, Fernandez F, Levy, JK. Psychostimulant response in AIDS-related co

J Clin Psychiatry 50:5-8, 1989.

35. Kieburtz KD, Epstein LG, Gelbard HA, Greenamyre JT. Excitotoxicity and dopam

in the acquired immunodeficiency syndrome dementia complex: therapeutic im

Arch Neurol 48:1281-84, 1991.

36. Dana Consortium on the Therapy of HIV Dementia and Related Cognitive Disord

blind, placebo-controlled trial of deprenyl and thioctic acid in human immunod

cognitive impairment. Neurology 50:645-51, 1998.

37. Baldeqwicz T, Goodkin K, Feaster DJ, et al. Plasma pyridoxine deficiency is rela

psychological distress in recently bereaved homosexual men. Psychosom Med 6

38. Herzlich BC, Schiano TD. Reversal of apparent AIDS dementia complex followin

with vitamin B12. J Intern Med 233:495-7,1993.

39. Shor-Posner G, Morgan R, Wilkie F, Eisdorfer C, Baum MK. Plasma cobalamin le

processing speed in a longitudinal study of HIV-1 disease. Arch Neurol 52:195-8

40. Wolters P, Brouwers P, Moss HA, Pizzo PA. Adaptive behavior of children with sy

before and after zidovudine therapy. J Pediatr Psychol. 19:47-61, 1994.

41. McKinney RE Jr, Johnson GM, Stanley K, et al. A randomized study of combined 

versus didanosine monotherapy in children with symptomatic therapy-naive HIV

133:500-8, 1997.

Chpt 10 1-17-03.p65 1249
250 U.S. Department of Health and Human Services • Health Resources and Services Administ

45. Grant I, Atkinson JH Jr. Neuropsychiric aspects of HIV infection and AIDS. In S

Kaplan and Sadock’s Comprehensive Textbook of Psychiatry. Philadelphia: Li

1999.

46. Atkinson JH Jr., Grant I, Kennedy CJ, et al. Prevalence of psychiatric disorders 

human immunodeficiency virus: a controlled study. Arch Gen Psychiatry 45:859

47. Brown GR, Rundell JR, McManis SE, et al. Prevalence of psychiatric disorders i

infection. Psychosom Med 54:588-601, 1992.

48. McDaniel JS, Fowlie E, Summerville MB, Farber EW, Cohen-Cole SA. An assess

morbidity and functioning in HIV disease. Gen Hosp Psychiatry 17:346-52, 1995

49. Lyketsos CG, Hutton H, Fishman M, Schwartz J, Treisman GJ. Psychiatric morb

primary care clinic. AIDS 10:1033-9, 1996.

50. Mayne TJ, Vittinghoff E, Chesney MA, Barrett DC, Coates TJ. Depressive affect 

bisexual men infected with HIV. Arch Intern Med 156:2233-8, 1996.

51. Singh N, Squier C, Sivek C, et al. Determinants of compliance with antiretrovira

immunodeficiency virus: prospective assessment with implications for enhancin

8:261-9, 1996.

52. Rabkin JG. Prevalence of psychiatric disorders in HIV illness. International Re

1996.

53. Lyketsos CG, Hanson AL, Fishman M, McHugh PR, Treisman GJ. Screening for p

medical outpatient clinic for HIV infection: the need for a psychiatric presence. 

13, 1994.

54. Pao M, Lyon M, D’Angelo LD, et al. Psychiatric diagnoses in adolescents seropo

immunodeficiency virus. Arch Pediatr Adolesc Med 154:240-4, 2000.

55. Havens JF, Mellins CA, Ryan S. Mental health treatment for children and famili

In Wicks L, ed. Psychotherapy and AIDS. Washington, DC: Taylor and Francis, 

56. Brown LK, Lescano CM, Lourie KJ. Children and adolescents with HIV infection

31: 61-68, 2001.

57. Remafedi G. The University of Minnesota Youth and AIDS Projects’ Adolescent 

a model to link HIV-seropositive youth with care. J of Adolesc Health. 23 (S2):1

58. Lyketsos CG, Hanson AL, Fishman M, et al. Manic syndrome early and late in th

Am J Psychiatry 150:326-7, 1993.

59. Mijch AM, Judd FK, Lyketsos CG, Ellen S, Cockram A. Secondary mania in patie

antiretrovirals protective? J Neuropsychiatry Clin Neurosci 11:475-80, 1999.

60. Lyketsos CG, Schwartz J, Fishman M, Treisman GJ. AIDS mania. J Neuropsychi

1997.

61. Markowitz JC, Kocsis JH, Fishman B, et al. Treatment of depressive symptoms i

virus positive patients. Arch Gen Psychiatry 55:452-7, 1998.

62. Cournos F, Forstein M, eds. What Mental Health Practitioners Need to Know A

San Francisco: Jossey-Bass, 2000.

63. Wagner GJ, Rabkin JG, Rabkin R. Dextroamphetamine as a treatment for depre

patients: a pilot study. J Psychosom Res 42:407-11, 1997.

64. Rabkin JG, Ferrando SJ, Wagner GJ, Rabkin R. DHEA treatment for HIV+ patie

androgenic and anabolic parameters. Psychoneuroendocrinology 25:53-68, 200

Chpt 10 1-17-03.p65 1250
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

University of California, San Francisco, AIDS Health Project Guide to Counse

Bass, 1998.

68. Bussing R, Burket RC. Anxiety and intrafamilial stress in children with hemoph

J Am Acad Child Adolesc Psychiatry 32:562-7, 1993.

69. Havens JF, Whitaker AH, Feldman JF, Ehrhardt AA. Psychiatric morbidity in sch

congenital human immunodeficiency virus infection: a pilot study. J Dev Behav 

70. Wolters PL, Brouwers P, Perez LA. Pediatric HIV infection. In Brown RT, ed. Co

Illness in Children. New York: Guilford Press, 1999.

71. Cesena M, Lee DO, Cebollero AM, Steingard RJ. Case study: behavioral symptom

encephalopathy successfully treated with clonidine. J Am Acad Child Adolesc P

72. Norman SE, Chediak AD, Kiel M, Cohn MA. Sleep disturbance in HIV-infected h

81, 1990.

73. Norman SE, Chediak AD, Freeman C, et al. Sleep disturbances in men with asym

immunodeficiency (HIV) infection. Sleep 15:150-5, 1992.

74. Darko DF, McCutchan JA, Kripke DF, Gillin JC, Golshan S. Fatigue, sleep distur

of progression of HIV infection. Am J of Psychiatry 149:514-20, 1992.

75. Darko DF, Mitler MM, Miller JC. Growth hormone, fatigue, poor sleep, and disab

Neuroendocrinology 67:317-24, 1998.

76. Batki SL, et al. Psychiatric disorders, drug use, and medical status in 84 intrave

disease. American Journal on Addictions 5:249-58, 1996.

77. Wegner N, Gifford A, Liu H, et al. Patient characteristics and attitudes associate

adherence. Presented at the 6th Conference on Retroviruses and Opportunistic 

(Abstract), January 31-February 4, 1999.

78. Gillenwater DR, McDaniel JS. Rational psychpharmacology for patients with HI

Psychiatric Annals 31:28-34, 2001.

79. Ferrando SJ. Substance abuse and HIV infection. Psychiatric Annals 31:57-62, 

80. Cournos F, McKinnon K. HIV seroprevalence among people with severe mental 

a critical review. Clini Psychol Rev 17:259-69, 1997.

81. Susser E, Colson P, Jandorf L, et al. HIV infection among young adults with psyc

Am J of Psychiatry 154:864-6, 1997.

82. Sewell DD, Jeste DV, McAdams LA, et al. (HNRC Group). Neuroleptic treatmen

Neuropsychopharmacolgy 10:2223-9, 1994.

83. Scamvougeras A, Rosebush PI. AIDS-related psychosis with catatonia respondin

J Clin Psychiatry 53:414-5, 1992.

84. Golding M, Perkins DO. Personality disorders in HIV infection. Int Rev Psychia

85. Jacobsberg L, Frances A, Perry S. Axis II diagnoses among volunteers for HIV te

Am J Psychiatry 152:1222-4, 1995.

86. Perkins DO, Davidson EJ, Leserman J, Liao D, Evans DL. Personality disorder i

a controlled study with implications for clinical care. Am J Psychiatry 150:309-

87. Grinspoon S, Corcoran C, Askari H, et al. Effects of androgen administration in 

syndrome: a randomized, double-blind, placebo-controlled trial. Ann Intern Me

88. Rabkin JG, Rabkin R, Wagner GJ. Testosterone treatment of clinical hypogonad

with HIV/AIDS. Int J STD AIDS 8:537-45, 1997.

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Joseph F ONeill, MD, MPH, and Peter A Selwyn, MD, 

INTRODUCTION

■ It is axiomatic in palliative care that suffering occurs in physical, e

spiritual domains and that each of these domains has an impact on 

though in many ways these domains are more complicated in patients w

ries, the approach to palliative care for the substance user is fundamen

other patient. Given the importance that substance use plays in the HI

important that care providers explore, understand and address these c

can often become frustrated with and alienated from substance-usin

destructive behaviors and care providers’ own negative attitudes can 

success. However, by attending to the specific clinical issues pertaini

integrating these into a palliative care treatment plan, providers can 

challenging population.

If a patient has a history of or is currently using alcohol or illicit dr

know. These issues should be, therefore, part of every history taken b

care team and can be readily addressed in the routine primary care enc

It is a mistake to raise issues of substance use only with patients who 

certain stereotypes. Care should be taken, however, to ensure that th

bers are not made to feel judged or guilty during these discussions.

Table 11-1: Screening for and Diagnosis of Substance Abus

History of Substance Abuse

Substances used Opioids (heroin, prescription 

Stimulants (cocaine, prescrip

Alcohol (beer, wine, spirits, n

Sedative-hypnotics (benzodia

Tobacco (cigarettes, chewing 

Other (marijuana, hallucinog

Routes of administration Injection (intravenous, subcu

Intranasal

Inhaled

Oral

Pattern of use Amount

Frequency

Duration

Most recent use

Needle-sharing or shooting ga

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The CAGE questionnaire is one helpful method of eliciting importan

alcohol use (see Table 11-2).3

Table 11-2: The CAGE Questionnaire

C: Have you ever felt you ought to Cut down on drinking?

A: Have people Annoyed you by criticizing your drinking?

G: Have you ever felt bad or Guilty about your drinking?

E: Have you ever had a drink first thing in the morning to 

your nerves or get rid of a hangover (Eye-opener)?

Source: Ewing, JA. Detecting alcoholism: the CAGE questionnaire. JAMA 252:1904-7, 1984.

It is often easiest to include questions regarding drug use among ques

and alcohol use in a straightforward, matter-of-fact manner. Physical 

tions can also be helpful. Track marks, evidence of soft tissue infection

liver function abnormalities, tremor, or asterixis can support a dia

Treatment outcome

Complications of Substance Abus

Medical Needle-induced: viral, bacteri

infections; peripheral vascula

Drug-induced: overdose, with

complications (nephropathy d

ischemia due to cocaine; gast

and neurologic disease due to 

Other: tuberculosis, sexually t

Social Unemployment

Family disruption

Legal problems

Homelessness

Physical Examination

Signs of injection drug use Recent: “tracks,” cellulitis, ab

Past: “track” or abscess scars

Evidence of medical complications

Laboratory Tests

Toxicologic screening of urine E.g.: opioids, cocaine, benzod

hallucinogins, alcohol

Screening for medical complications E.g.: hepatitis B, C serologies

abnormalities

Source: O’Connor PG, Selwyn PA, Schottenfeld RS. Medical care for injection-drug users with hum

N Engl J Med 331:450-9, 1994.

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route of administration, frequency of use, and medical complications

ance and dependence should be understood (see below). If a patient h

treatment, the palliative care team should know the approach that wa

the patient’s drug use. In these circumstances, the palliative care tea

pert in treating addictions.

GENERAL MEDICAL CARE

■ While this chapter does not attempt to review the myriad medical co

use and HIV, it is important that the palliative care provider be aware o

he or she may face and be prepared to seek consultation when necess

Substance users can be at higher risk for diseases besides HIV/AIDS. 

are transmitted parenterally, as are bacteria causing endocarditis, soft t

infections. Tuberculosis and sexually transmitted diseases are more co

and must be ruled out. Chronic lung disease associated with exposu

“cut” cocaine and heroin and chronic liver disease associated with alc

of palliative care medically complex.

Active drug users are at risk for withdrawal (from opiates, alcohol, bar

epines), which can be a life-threatening emergency. Cocaine, partic

smoked, can cause cardiac arrhythmias, hypertension, hyperpyrexia, r

bral or coronary artery vasospasm. Substances that suppress conscious

induce coma and death. Opiates, in addition, can cause non-cardiogen

PAIN

■ Pain is often poorly managed in the substance-abusing patient or in 

of substance use.5 This can be because pain is not recognized as su

manipulation or “drug-seeking;” because unique predispositions to pa

because of ignorance of basic principles of addiction and/or pain mana

appropriately, providers need a systematic and thoughtful approach.

Substance Use and Pain

It must first be understood and accepted that a history of substan

someone from having real pain. In many cases, in fact, substance use 

to experience physical pain (secondary to trauma, chronic venous insuf

holic or nutritional neuropathies, etc.) or to have pain that is difficult 

reasons. Patients who have developed tolerance to opiates may requir

cations considerably higher than non-tolerant patients, and this may m

comfortable. Additionally, it has been shown that some substance users 

may have a lower pain threshold than others.6

 Finally, the profound e

even spiritual complications of substance use contribute to pain sym

dressed to manage pain successfully.

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limits, develop a written contract and move on. Such a contract shoul

• The total amount of medication is specified that will be pres

period of time (with the provider dispensing only small amo

to limit the possibility of abuse)

• Only one person will write and one pharmacy will fill prescr

controlled substances

• Refills will not be given for “lost” or “stolen” prescriptions

• Random toxicology screenings will be part of the treatment 

• Forgery of prescriptions or other serious violations of the law 

criminal prosecution of the patient

While these efforts can be very effective in helping to prevent manipu

scribed narcotics, abuse can sometimes still occur. It is important for p

types of behaviors suggestive of abuse, in order to be able to prevent an

(Table 11-3).5

Table 11-3: Spectrum of Aberrant Drug-Related Behaviors 

during Treatment with Narcotic Analgesics

More Suggestive of Drug Abuse Less Suggestiv

• Reports of ‘lost’ or ‘stolen’ prescriptions

• Selling prescription drugs

• Prescription forgery

• Stealing drugs from others

• Injecting oral formulations

• Obtaining prescription drugs

from nonmedical sources

• Concurrent abuse of alcohol or

illicit drugs

• Repeated dose escalations or similar

noncompliance despite multiple

warnings

• Repeated visits to other clinicians or

emergency rooms without informing

the prescriber

• Drug-related deterioration in function

at work, in the family, or socially

• Repeated resistance to changes in

therapy despite evidence of adverse

drug effects

• Aggressive compla

need for more dru

• Drug-hoarding du

reduced symptom

• Requesting specif

• Openly acquiring 

other medical sou

• Occasional unsan

or other noncomp

• Unapproved use o

another symptom

• Reporting psychic 

by the clinician

• Resistance to a ch

associated with to

• Intense expressio

recurrent sympto

Source: Passik SD, Portenoy RK. Substance abuse issues in palliative care. In Berger A, ed. Prin

Oncology. Philadelphia: Lippincott-Raven Publishers, 1998.

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undertreated than white patients.7

 It has also been shown that phar

neighborhoods may not stock narcotic medications and thus make a

more difficult.8

 As will be discussed below, substance-using patients of

negative interactions with the health care system. Provider prejudic

palliative care of an HIV-infected patient, can inflict further damage 

trust and healing are most needed.

Pharmacologic Properties and Physiologic Impact of Sub

Providers must know what substance(s) the patient is using, the ph

and the physiologic impact. A patient with a chronic addiction to al

physiologic response to a given dose of an opiate than someone who 

heroin. Similarly, someone with alcohol-related peripheral nerve dama

related neuropathy more severely than a cocaine user.

Care must be taken to precisely describe the patient’s use of the subst

5 provide definitions of commonly used terms in this regard. 5, 9, 10, 11 P

allows clear communication among all members of the palliative care t

specialists) and forms the basis of an explicit clinical rationale for 

treatment decisions.

Table 11-4: Definitions of Substance Dependence and Abu

Substance Dependence:

A maladaptive pattern of substance abuse, leading to clinically signif

tress, as manifested by three or more of the following, occurring at any 

month period:

Tolerance, as defined by either of the following:

• A need for markedly increased amounts of substance to achie

desired effects, or

• Markedly diminished effect with continued use of the same

amount of the substance.

Withdrawal, as manifested by either of the following:

• The characteristic withdrawal syndrome for the substance, or

• The same (or closely related) substance is taken to relieve or 

symptoms.

The substance is often taken in larger amounts or over a longer period 

There is a persistent desire or unsuccessful effort to cut down or con

A great deal of time is spent in activities necessary to obtain the su

substance, or recover from its effects

• (e.g., visiting multiple doctors or driving long distances, chain 

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physical or psychological problem that is likely to have been caused 

the substance

• (e.g., current cocaine use despite recognition of cocaine-indu

continued drinking despite recognition that an ulcer was mad

consumption).

Substance Abuse:

A maladaptive pattern of substance abuse, leading to clinically signifi

distress, as manifested by one (or more) of the following, occurring w

period:

Recurrent substance use resulting in a failure to fulfill major role o

school, or home:

• repeated absences or poor work performance related to subst

• substance abuse-related absence, suspension,

• expulsions from school, or

• neglect of children or household.

Recurrent substance use in situations in which it is physically h

• driving an automobile, or

• operating a machine when impaired by substance use.

Recurrent substance-related legal problems, such as arrests for sub

disorderly conduct.

Continued substance use despite having persistent or recurrent soc

interpersonal problems caused or exacerbated by the effects of the 

• (e.g., arguments with spouse about consequences of intoxicat

physical fights).

The symptoms have never met the criteria for substance dependen

this class of substance.

Sources: Passik SD, Portenoy RK. Substance abuse issues in palliative care. In Berger AM, Portenoy 

and Practice of Supportive Oncology, 1st ed. Philadelphia: Lippincott-Raven Publishers, 1998; 

Diagnostic and Statistical Manual for Mental Disorders, 4th ed. Washington, DC: American Psych

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It is characterized by behavio

more of the following:

• impaired control over dru

• compulsive use;

• continued use despite ha

• craving.

Most consistent with related 

cal dependence and the DSM-

dependence.

Physical dependence A state of adaptation that is m

class-specific withdrawal synd

produced by abrupt cessation

decreasing blood level of the 

tion of an antagonist.

Tolerance A state of adaptation in which 

induces changes that result in 

more of the drug’s effects ove

Pseudo-addiction Syndrome of behavioral symp

seen with psychological depen

overwhelming and compulsive 

acquisition and use of opioid 

Unlike true psychological dep

addiction is an iatrogenic syn

undermedication of pain.

Symptoms and aberrant beha

is effectively controlled.

Sources: American Academy of Pain Medicine, American Pain Society and American Society of Ad

tions Related to the Use of Opioids for the Treatment of Pain. Public policy statement, 2001. 

Weissman DE, Hadox DJ. Opioid pseudoaddiction – an iatrogenic syndrome. Pain 36:363-6, 1989.

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Table 11-6: Treating Pain in Methadone-Maintained Patients

Methadone used as daily maintenance therapy for opioid addiction h

gesic effects. It is legal and permissible to prescribe opioid anal

dicted patients for the treatment of pain if these opioids are clinic

scribed with appropriate documentation and precautions to prev

done-maintained patients receiving opioid analgesics, these opioi

addition to the daily maintenance dose of methadone.

Due to opioid tolerance, it is generally necessary to use higher and m

opioid analgesics in methadone-maintained patients compared with 

Methadone is an excellent opioid analgesic agent when used to trea

dosing) but due to possible therapeutic confusion, miscommunicat

sues, it is preferable to use another opioid when this class of analgesi

done-maintained patients.

In inpatients or homebound patients with chronic severe pain, in th

nal illness, patients’ entire opioid analgesic dose plus the daily me

dose may be converted into a continuous subcutaneous or intravenous 

methadone or another opioid as clinically indicated.

Source: Selwyn PA. Pain management in substance users. In Manual for Primary Care Provider

Abusers. New York: New York Academy of Medicine, in press.

The baseline methadone dose should never be assumed to be sufficie

more, increasing a patient’s daily methadone dosage for purposes of t

drawbacks, as follows:

• It can greatly confuse psychosocial aspects of addiction trea

• It will be ineffective as a means of pain control (methadone 

pain is dosed q 6 to 8 hrs, and when used for addiction treat

qd; patients already on methadone maintenance would need 

higher additional doses of methadone to achieve any analge

• It can potentially expose the palliative care team to legal co

difficulties as it is illegal to prescribe methadone for addicti

outside of a licensed methadone maintenance program

Near the end of life, inpatient or homebound patients on methadone m

from a less rigid approach. A total daily opiate dose (e.g., morphine, 

given via continuous intravenous or subcutaneous infusion pump.

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associated symptoms and signs; impact on life and psychology; and effec

the provider can determine whether the pain is of nociceptive or neu

tinction is important as it can have treatment implications. Nociceptive 

lation of afferent receptors and can cause myriad painful sensations

matic (involving skin, muscle, bone and soft tissue) or visceral; mild to 

derives from damaged or otherwise compromised nerves and tends to 

bing, burning, electric shock-like pain, or discomfort that is caused b

the skin (allodynia).

As is true in any patient, effective pain management in the substanc

multiple modalities and usually requires contributions from all memb

team. The pharmacological approach is best guided by the World Hea

three-tiered ladder–starting with non-narcotic analgesics (step one); 

ics (step two); and finally moving to strong opioids (step three). (See 

Pain.) Adjuvant analgesics can be added at any step (e.g., for neuropat

to be aware, however, that in a patient who has developed tolerance to 

(step three) may be needed sooner, at greater frequency, and at higher 

wise be expected. It is better for the primary care provider to work and 

or two drugs in each class (doses, pharmacokinetics, conversions, side 

than to have only a superficial knowledge of all of them. As a general ru

level treatment to the maximum before advancing to the next level. 

severe pain, therapy can rightly begin at step two.

While taking reports of pain seriously, providers should also act to m

abuse. This often means opting for the alternative that is least temptin

use of a stronger, more readily abused drug for mild to moderate pain 

able that is less likely to be abused. For example, codeine is weaker, 

constipating, and of lower “street value” than oxycodone, morphine, or h

this is not a firm rule, long-acting drugs tend to be less likely to be a

ones, and certain formulations (e.g., the transdermal fentanyl patch) m

than others (e.g., brand-name oxycodone pills, which have a higher “s

oxycodone).

As noted above, the concepts of tolerance and dependence are very im

treating pain in substance users. (See Tables 11-4 and 11-5.) Because o

have higher narcotic requirements than patients who are opioid-naïv

will have to be prescribed at higher dosages and more frequen

counterintuitive to providers who are reluctant to prescribe opioids to 

opioid abuse. However, unless the provider accounts for the patient’s 

treatment will be guaranteed to fail. Moreover, a common scenario w

providers may interpret patients’ requests for higher doses or early pr

of drug-seeking, thus confirming their prejudices about manipulative b

ers, when in fact this patient response is entirely predictable based 

opioid medications.

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When switching between opioids and analgesics clinicians must be f

between different drugs in order to maintain a constant level of analge

(See Chapter 4: Pain.) As cross-tolerance between opioids is not alway

initial dose of a new opioid should be about half of the calculated dose 

for side effects. Rapid scale-up of the medication can follow.

Meperidine (which has long-acting metabolites) and mixed agonis

can precipitate withdrawal such as pentazocine and butorphanol sho

Providers should also be careful when prescribing narcotic combinat

tially hepatotoxic agents like acetaminophen (e.g., fixed-combinatio

plus acetaminophen). In many cases, the dose-ceiling for these drug

nophen (for which the daily dose should not exceed 4 gm/day and in s

and not the opioid itself. This is particularly true in a drug-using pop

at high risk for hepatitis.

Neuropathic pain also can be pharmacologically managed using the WH

agement, however, often involves more aggressive use of adjuvant treat

known to act on the central nervous system: anti-depressants, anti-

(See Chapter 4: Pain.)

Route of administration of opiates is also an important issue in this p

whose substance use is in remission may strongly object to administr

needle and be much more comfortable with oral or transdermal prep

when there is concern that medications may be sold on the street (

household members), long-acting, transdermal, and generic formulatio

misuse can still occur with all of these options. Indwelling catheters po

that they can be, and are, misused by some patients. In these cases, 

pump may be a better option.

Physicians often fear that they are being manipulated to over-prescrib

Alternatively, they may be concerned that they will create or re-estab

are no easy answers to these dilemmas. Both are real dangers. How

formed by a solid understanding of the precise nature of the patient’s s

above, the chances of such bad outcomes are lessened.

That said, the fear of over-prescribing should not prevent effective pa

teaching on treatment of appendicitis holds that:

Accuracy of preoperative diagnosis should be about 85%. I

considerably less, some unnecessary operations are proba

done, and a more rigorous pre-operative differential diag

order. On the other hand, an accuracy consistently greate

percent should also cause concern, since this may mean t

patients with atypical but bona fide acute appendicitis ar

“observed” when they should have prompt surgical interv

Chpt 11 1-17-03.p65 1262
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Symptoms other than pain are managed much the same in the substan

other groups. It should be remembered, however, that pain (physical, 

and will exacerbate suffering associated with a variety of symptoms. 

appropriately managed in the substance user, it is less likely that oth

either.

PSYCHOLOGICAL, SPIRITUAL, AND SOCIAL CONCER

■ Substance users typically have histories of negative interactions with 

and providers. The palliative care provider may, therefore, find himse

mistrustful or even hostile patient requiring considerable effort, time

coming this barrier can be especially rewarding, particularly if it mean

meet his or her death in an environment of trust and respect.

Alcohol aside, substance use is an illegal activity. Discovery or admiss

ries with it fear of criminal prosecution, loss of children, dissolution of 

employment, and other social sanctions. The clinician should anticipat

mind a reasonable plan of action should they be raised. At times, the p

team must have legal advice to ensure that the patient’s interests are 

Substance users often live in chaotic social situations that make home 

tions with a street value are stolen; violence is common (women living 

use are at increased risk for physical and sexual abuse);14 reliable prim

cult to identify; and providing security to members of the care team can 

cases institution-based care may be sought earlier than would otherwis

There are high rates of psychiatric co-morbidity in the substance using 

presenting with active substance use should therefore have a psychiatr

ter 10: Psychiatric Problems). Even when substance use is in remiss

member that HIV/AIDS is in and of itself a stressor, that stages of c

especially difficult from a psychological point of view, and that there i

such times.

Spiritual concerns among substance users are as varied and univer

people. (See Chapter 13: Spiritual Care.) There are, however, some ad

Many former substance users rely upon deeply held religious convicti

It is critical that these beliefs be understood and respected by the pa

example, a patient is a member of Alcoholics or Narcotics Anonymou

include the patient’s sponsor as a member of the care team. Active u

may have experienced repeated rejection from religious institution

comfortable dealing with spiritual concerns in other ways. Many p

from religious institutions of their youth desire, as their health dete

is important, therefore, that the palliative care team maintain a high 

openness in this regard.

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their reports of pain will not be taken seriously, that they will be dism

manipulative, or that they will generally be treated with hostility and 

framework often guarantees even before an encounter begins that it wil

ability to overcome this negative framework can be critically import

comes and provider satisfaction. Especially for patients at the end of l

pathy, understanding, and healing occur frequently, and provide contin

stance use need not disqualify patients from receiving effective care.

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1. Saunders C. The Management of Terminal Illness. London: Edward Arnold, 19

2. O’Connor PG, Selwyn PA, Schottenfeld RS. Medical care for injection-drug users 

ciency virus. N Engl J Med 331:450-9, 1994.

3. Ewing JA. Detecting alcoholism: the CAGE questionnaire. JAMA 252:1904-7, 19

4. O’Connor PG, Samet JH, Stein MD. Management of hospitalized intravenous dru

Am J Med 96:551-8, 1994.

5. Passik SD, Portenoy RK. Substance abuse issues in palliative care. In Berger A

DE, eds. Principles and Practice of Supportive Oncology, 1st ed. Philadelphia: 

1998.

6. Compton P, Charuvastra VC, Kintaudi K, Ling W. Pain responses in methadone-m

J Pain Symptom Manage 20:237-45, 2000.

7. Todd KH, Samaroo N, Hoffman JR. Ethnicity as a risk factor for inadequate eme

JAMA 269:1537-9, 1993.

8. Morrison RS, Wallenstein S, Natale DK, Semzel, RS, Uang LL “We don’t carry th

predominately nonwhite neighborhoods to stock opioid analgesics. N Engl J Me

9. American Psychiatric Association. Diagnostic and Statistical Manual of Menta

Washington, DC: American Psychiatric Association, 1994.

10. American Academy of Pain Medicine, American Pain Society and American Soc

(ASAM). Definitions Related to the Use of Opioids for the Treatment of Pain. P

Available at http://www.asam.org

11. Weissman DE, Hadox DJ. Opioid pseudoaddiction – an iatrogenic syndrome. Pa

12. Selwyn PA. Pain management in substance users. In Manual for Primary Care 

Caring for Substance Abusers. New York: New York Academy of Medicine, in pr

13. Storer E. Diseases of the appendix. In Schwartz SI, ed. Principles of Surgery, 

Hill, 1984.

14. Weissman G, Brown VB. Drug using women and HIV: access to care and treatme

Jemmott LD, eds. Women and AIDS: Coping and Care. New York: Plenum Pre

Chpt 11 1-17-03.p65 1265
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Nancy Hutton, MD, and James M Oleske, MD, MP

INTRODUCTION

■ All HIV clinicians, whether they care for adults or children, need 

issues and needs of children and adolescents in order to provide palli

providers must have the knowledge and skills to provide palliative care to 

the disease trajectory. They must also be cognizant of the palliative c

family members in a child’s life. Providers for adults with HIV must 

children and adolescents in the lives of their adult patients, especiall

tive care and care at the end of life.

This chapter first describes the developmental continuum of childr

then addresses pain and symptom management. Finally a range of iss

children with advanced disease is discussed, including prognostica

decisionmaking and communication including disclosure of HIV status

children including permanency planning.

HIV Is a Family Disease

HIV is a family disease in every sense. In pediatric HIV infection, the

generations of the family infected: mothers (and often fathers) and ch

caring for sick children as their own disease progresses. Families livin

several people with HIV, increasing the disease’s impact on each ind

tially. When multiple adult siblings are infected, substantial caregiv

aging parents. If those adult children have children themselves, car

sick mothers and sick children often falls to grandparents or other eld

Children and Adolescents Infected with HIV

Young people with HIV/AIDS require high quality care throughout 

disease, including high quality palliative care. The advent of highly act

nation therapies (HAART) has not made palliative care obsolete. In 

goals. As symptom management is an important component of pallia

symptoms associated with antiretroviral therapy should be an integral 

management in a newly diagnosed patient.

HAART has not cured HIV. A cohort of children has survived into ado

and dual therapies. These young people, now in their mid-teen years 

care, are grappling with the failure of medical treatment to stem the pro

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from the multiple deaths of parents and other treasured adults, the los

are beginning to escalate again. The needs of children and adolescent

protection, nurturing, discipline, and mentoring in order to grow into i

dren also need support in anticipating and preparing for loss and in 

reavement.

DEVELOPMENTAL CONTINUUM

■ The single characteristic that makes children stand apart from adu

and development. Because the changes are so large and so rapid durin

any engagement with children and adolescents, whether infected or af

sense of where a child is on his/her developmental trajectory. Health 

understand a child or adolescent’s level of development in order to off

For purposes of description, four streams of development will be prese

• Physical growth and physiological maturation

• Motor skills development

• Cognitive maturation

• Social and emotional maturation

Some streams may have greater relevance than others to certain situa

must always remember that all four streams are intertwined into the u

individual child or adolescent.

Physical Growth and Physiological Maturation

Childhood and adolescence are periods of rapid physical growth. Ne

weight in the first year of life. By the age of 15, an adolescent will weigh 

or she weighed as a ten year old. Appetite, diet, and caloric intak

as a child grows. Clothing and shoes become too small before they a

requires close supervision and protection by nurturing adults with th

growing child.

Growth, Size and HIV Infection

Growth failure is a common complication of HIV infection. Short st

lead to teasing by peers and inappropriate treatment by adults who t

younger child.

Clearly “one size” cannot “fit all.” For children with special health car

be available in appropriate sizes. Blood pressure cuffs, wheelchairs, b

a range of sizes.

Using safe and familiar items creatively is desirable. For instance, chi

tired to walk around or go outside may enjoy rides in a wagon filled wi

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(Table 12-1).

Common pediatric medicines such as antibiotics have been studied for 

mal dosing in even the youngest patients. Often, children require and to

than adults. However, many medications that are used to manage sym

have not been formally tested in children.

Table 12-1: Example Illustrating the Need for Flexible Dosi

Range of Doses for a Common Antibiotic Pres

during Childhood and Adolescence

Age Weight Dose Calculation Do

2 months 5 kg or 11 lb 50 mg/kg/day 

3 years 15 kg or 33 lb 50 mg/kg/day 

9 years 30 kg or 66 lb 50 mg/kg/day 

14 years 50 kg or 110 lb (equiv to 15-30 mg/kg/day) 

Adult 70 kg or 154 lb (equiv to 10-20 mg/kg/day) 

Medication formulations must provide flexible doses in a form that 

Liquid formulations offer the most flexible dose titration and are the 

flavor and odor are tolerable. Sustained release preparations can re

number of doses, but must be available in multiple strengths in orde

children or adolescents. Transdermal patches, an ideal delivery system

limited number of drugs and in adult dose ranges.

Motor Skills Development

Human infants are completely dependent on adult caregivers for 

activities until they develop into independent people responsible for t

tor skills are the first developmental milestones we see, as infants lear

and climb. Fine motor skills include using hands to accomplish increas

as grasping, carrying, self-feeding, and gaining voluntary control ove

(chewing, swallowing, bowel and bladder control).

Motor skills influence the extent to which children can cooperate with 

or care for others. They are markers of independence and usually gre

sometimes assume that physical skills predict cognitive or emotional 

lead adults to expect children to shoulder burdens that are not appropr

emotional level of development.

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and progressive illness.

Cognitive Maturation

A child’s developing ability to think is reflected in his or her ability 

ten and spoken language, and in the ability to solve problems. Expre

the vocalizations, body motions, or writings that a child will use to att

others. Primitive skills will communicate comfort or discomfort (smili

advances, expressions become more intricate and refined, becoming r

sentences, then paragraphs and conversations. With patients who ar

ascertain their experience of physical symptoms or psychological loss 

to express these ideas in ways we can understand.

Receptive language skills include a child’s ability to hear and underst

see and read the written word. All these skills are necessary for childr

adults) to participate effectively in decisionmaking. These skills dev

matures. Young children understand events concretely while adolescen

abstractly. Our explanations of what is going to happen and why, or of 

can only be shared to the extent that a child has the receptive skills an

comprehend what is being communicated and its implications.

Social and Emotional Maturation

A child’s social interaction begins with parents and other daily ca

year, infants begin to distinguish self from others, and familiar others 

gin to remember people even when the people are not physically pre

year, children begin parallel play and later become truly interactive in 

tion with peers becomes important throughout the school years, and 

tance as adolescents become more independent from adults. Table 12-2 

health care providers to use in working with children and adolescen

social development.

A personal or family illness will interfere with the normal progression 

process. Missing school and other opportunities for age-appropriate 

regression of this component of development.

Emotionally, a child’s experience of loss (self, family, friends) will var

developmental age. The same loss may be re-experienced in new way

child’s development.

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Need physical and emotion

Adults should give very sim

Object permanence develo

Toddlers (1-2 years) Are learning words

May have temper tantrums

Adults should give simple e

Adults should be clear, con

Adults should prepare todd

procedures just beforehand

Adults should be efficient a

Preschoolers (3-4 years) Have simple conversations

Can play with others

Have concerns about body 

Show magical thinking

Adults should provide conc

what is happening and why

Children (5-11 years) Are curious about own bod

Spontaneous questions are 

to tell children the truth

Learn to read

Begin to understand cause 

Offering children choices i

their sense of control

Early Adolescents (12-14 years) Puberty is a period of rapid 

emotional, and social chan

Want to be treated like adu

Struggle with their own vul

vs. invulnerability

Need direct positive adult s

Peer relationships are very 

Late Adolescents (15-18 years) Are abstract, existential th

Can accept active responsi

Can be active in health car

participation in research

Still need adult structure a

May be shouldering adult r

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the quality of living through HIV-specific therapies and other support

pies.

Symptom Management

This section explores the range of physical symptoms experienced 

cents with HIV/AIDS, management options for these symptoms, and s

implementing effective management. Conscious use of this framework 

diagnosis will help to facilitate the transitions in care that must occur 

The range of symptoms experienced by children and adolescents is s

with HIV/AIDS. Some symptoms are caused by the underlying disea

and some are caused by the procedures and treatments that are use

(Table 12-3).

Table 12-3: Causes of Symptoms in HIV/AIDS Patients

Symptom

Causes

Disease Procedure 

Pain ■ ■

Nausea ■ 

Anorexia ■ 

Vomiting ■ 

Diarrhea ■ 

Constipation ■ 

Fatigue ■ 

Fever ■

Dyspnea ■

Cough ■

Bleeding ■

Seizures ■

Anxiety ■■ 

Fear ■■ 

Depression ■

Sleep disturbance ■■ 

Skin lesions ■■ 

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The clinician’s first obligation is to prevent the pain and symptoms 

and treatment provided to patients. This means being conscious of th

preemptively to prevent or control them. The most common procedur

pain due to needle sticks (injections, phlebotomy, intravenous access, lu

cream (eutectic mixture of local anesthetics) is readily available and e

indications. A barrier to its use is a provider perception that there is 

work. Usually the lack of time for application of EMLA is a result of pr

pate the need for EMLA at the beginning of a clinical encounter. So

apply EMLA at home prior to traveling to a clinical appointment; aga

providers anticipate the predictable need for topical pain relief and s

ahead of time to implement a strategy for prevention.

Anticipatory fear and anxiety are common procedure-associated sympto

as in adults. With children, preparation for procedures using medica

reducing fear, improving a sense of mastery and control, and thereby 

cooperation with procedures. Child life specialists are trained profess

opmentally appropriate psychologic preparation and can provide dir

throughout the procedure. Techniques include the use of dolls, med

child can touch and manipulate, pictures and books, and role-playing 

role of the health care professional. Distraction, imagery, relaxation, 

techniques used during procedures to complement analgesia and prep

Many medications have the potential to cause side effects. HAART re

prits, causing nausea, vomiting, diarrhea, headache, dysphoria, or pare

ing therapy early in the course of HIV disease may feel well until startin

sick. For children with progressive disease, medicines may add or obsc

possible, providers should minimize treatment-associated symptoms 

scribing, patient preparation, and medical management.

Assessing Symptoms

The first step is to determine whether a patient is experiencing a

which? Each symptom must be assessed regarding the following facto

• Onset

• Severity

• Duration

• The presence of precipitating, aggravating, and relieving fac

While this assessment can be challenging with adult patients, it can see

Direct observation of the child and the report of a parenting adult are 

pediatric assessment. In preverbal children, behavioral observation of 

drawn or depressed affect, tense body position or facial grimacing, a

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discomfort, so a child’s denial of a symptom that seems likely to be p

context as well. For instance, a therapeutic trial of analgesia is somet

out how much pain is contributing to the patient’s current condition.

Pain Assessment

Pain comes in many forms. Remarkably, patients may not report pai

whether it is present. Pain is an important symptom for alerting pr

require further investigation and treatment. Pain is also a problem in 

tient and requires specific management, regardless of its underlying e

Pain assessment logically begins with location. Providers should ask, “W

other pains do you have?” A list of all the pains helps the provider 

assessment.

Possible pains in children and adolescents include the following:

• Headache

• Stomach Ache or Abdominal Pain

• Chest Pain

• Back Pain

• Ear Ache, Sore Throat, Mouth Pain, or Tooth Pain

• Extremity Pain

Knowing when a child has multiple pains helps the provider addres

appropriate modalities and allows specific reassessment to assure the p

to each intervention.

The severity or intensity of the pain can be assessed using the behavi

scale, or the 1-10 scale. (See Figures 4-2 to 4-5 in Chapter 4: Pain.) 

providers to determine when a patient’s pain is getting worse and wh

viding relief.

The character of the pain may be more difficult to elicit. Some child

descriptors that suggest an etiology of the pain, such as aching versus 

many children will simply say it hurts. Some can describe onset and f

only be able to tell the provider if the pain is present now and whether 

Colicky pain may require adult observation of the exacerbation/remiss

Physical Examination and Verbal Questioning

of Children to Assess Symptoms

Physical examination begins with the careful observation of the patien

movements, and level of arousal/interaction. This phase of the exam 

with children. Children become frightened and start crying even in ant

may cause them further pain. Once a child reaches this state, it is near

nate areas of tenderness or to complete an adequate exam.

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thing hurts, so that further hurt can be minimized, helps include the ch

promotes cooperation and improved feedback about symptoms.

Neuropathic pains may have associated motor and sensory changes. Se

hyperesthetic areas that cannot tolerate even light touch. The pain o

may feel deep and aching but not be made worse by direct palpation in 

The assessment of symptoms other than pain in children is less well s

observation by parents and health care professionals and the subjectiv

Behavioral observations can make us suspicious that a child is experien

not indicate specifically which symptom. For this, providers need the c

the child’s capacity to provide this feedback is limited by his or her de

proxies may not provide an accurate assessment. In addition, we have f

sures, inhibiting our ability to detect changes in severity over time o

improvements in response to specific interventions. Sometimes the 

mine the presence or absence of a symptom. (See Table 12-4).

Table 12-4: Sources of Information about Symptoms in Chi

Symptom Presence 

Pain O, R 

Vomiting O, R 

Nausea R 

Diarrhea O, R 

Constipation O, R 

Fatigue O, R 

Anxiety O, R 

Depression O, R 

Skin lesions O, R 

Anorexia O, R 

Insomnia O, R 

Dyspnea O, R 

Fever O, R 

Cough O, R 

Bleeding O, R 

Seizures O 

O = Direct observation by caregiver or health professional; R = Patien

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activity, disturbed sleep, or fussy behavior.

As discussed above, behavioral observations regarding changes in app

mood do not necessarily indicate the presence of a specific sympto

nausea could cause the same spectrum of behaviors; identifying the c

sary for effective symptom management.

Providers need to ask older children directly about their symptoms, in 

caregivers for their observations. Children may not recognize or accu

scriptors. Nonetheless, their reports are critical pieces of symptom ass

cult to describe or explain. Constipation may be missed because child

their bowel movements. Fatigue may be misinterpreted by adults as la

depression can cause behaviors that adults could label as oppositional 

exploring their underlying etiology.

Treating Symptoms

An effective symptom management plan will include both pharmaco

logic modalities. Pharmacologic treatment of infants, children, and a

lenges uncommon in adult medicine. The safety and efficacy of many co

not been established in the youngest age groups. Similarly, pharmacok

intervals are unavailable for many drugs. This is particularly true for p

two periods of rapid physical growth and maturation: infancy and pub

extrapolate information from adult studies, using promising medicatio

and “guesstimating” doses. However, adult medications may not be a

that young children can swallow or doses that young children can take

tration may be frightening or painful.

Pain

Managing pain involves identifying and treating any reversible cause

responsive to antibiotic therapy). Specific pain management should com

pies until the underlying problem is resolved and no longer causing pai

in advanced disease, will elude clear delineation of etiology or be due 

there is no effective therapy. In these circumstances, specific pain ma

nent therapy. (See Chapter 4: Pain.)

Within the field of pediatrics, we have experience with non-pharmaco

distraction, relaxation, and breathing techniques for procedure-asso

providers treating children and adolescents need to expand and refin

niques for chronic and complex pain syndromes.

Providers also need to be comfortable with the use of analgesics (Table 

medicines in our armamentarium will go a long way toward relieving p

ing their mechanisms of action, dosing options, and potential for syner

and toxicities reduces the barrier of provider ignorance and discomfo

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Acetaminophen 10-15 mg/kg/dose q 4-6 hours Drop

Syru

Chew

Table

Ibuprofen 5-10 mg/kg/dose q 6-8 hours Drop

Syru

Chew

Table

400m

Oxycodone 0.2 mg/kg/dose q 3-4 hrs Solut

Table

Morphine 0.15-0.3 mg/kg/dose q 4 hrs Solut

5ml, 

Table

Nausea and Vomiting

Provide frequent sips & small meals. If possible, discontinue offending 

patient with antiemetics (Table 12-6).

Table 12-6: Antiemetics for Nausea and Vomiting in Childre

Basic antiemetics Dose For

Metoclopramide 0.1-0.2 mg/kg/dose q 6 hours Solut

Syru

Table

Prochlorperazine 0.1-0.2 mg/kg/dose q 6 hours Syru

Supp

25mg

Table

Diarrhea and Constipation

Dietary fiber helps control both conditions. Laxatives should be prescr

vent painful constipation. Skin care is very important when diarrhea o

skin integrity. (See Chapter 7: Gastrointestinal Symptoms.)

Source: Adapted from World Health Organization. Cancer Pain and Palliative Care in Children. G

1998.

Source: Adapted from World Health Organization. Cancer Pain and Palliative Care in Children. G

1998.

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pain, nausea, vomiting, or diarrhea. (See Chapter 5: Constitutional Sy

Fatigue and Sleep Disturbance

Promote sleep through adequate symptom control, a peaceful and co

and orders not to awaken the child unless he or she is taking around-th

Move as quickly as possible to long-acting agents. Offer quiet activitie

play, walk outdoors, and remain awake during the day to promote s

medication (methylphenidate 0.1-0.5 mg/kg/dose) can be prescribed t

the day.1

 (See Chapter 5: Constitutional Symptoms.)

Skin Care

Bathing, moisturizing, and massage all promote skin integrity and p

Cushion the child’s pressure points and change his or her position fre

sure sores. (See Chapter 25: Prevention of Skin Breakdown.)

Dyspnea

Several strategies exist to help relieve the sensation of shortness of br

gen, nebulized saline or bronchodilators, opioids (systemic or nebuliz

sistance with ambulation. (See Chapter 6: Pulmonary Symptoms.)

Anxiety and Depression

The value to a patient of another human presence should not be undere

patient to use both verbal and non-verbal avenues for expression. Anxiol

have important roles in relieving these symptoms. Drug interactions ar

inhibitors and NNRTIs so the choice of agent will depend on the child’s o

Lorazepam (0.02-0.04mg/kg/dose q 4-6 hours)1

 can generally be used con

inhibitors. However, midazolam is contraindicated. (See Chapter 10: P

CARING FOR CHILDREN WITH ADVANCED DISEASE

Prognostication: How Do We Know When the End of Life 

Accurate prognostication requires knowledge about disease trajecto

variation, and the potential impact of therapeutic interventions. Altho

ultimately a fatal disease, there are wide ranges of severity and surviva

adolescent age groups. Declining CD4 counts and clinical complicati

disease.

In the era prior to HAART, we were able to predict moderately well wh

ing the end of life. Children experienced recurrent hospitalizations wit

tions and end organ disease. Their recoveries with each exacerbation 

Chpt 12 1-17-03.p65 1278
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Children and adolescents are very resilient. They tolerate many therap

They recover more quickly and completely from injury or surgical in

times prove our predictions wrong and recover from complications we 

On the other hand, children and adolescents sometimes die suddenly

tempts at resuscitation.

Health professionals sometimes have difficulty acknowledging how poo

We generally err on the side of optimism, thinking that our patients 

than they actually do. Our need to feel that we have “done everythin

magnified when working with young people who have only begun their 

optimism feels hopeful and positive, it must not blind us from the w

excellent palliative and end of life care.

Role of Antiretroviral Therapy in End-of-Life Care

The role of antiretroviral therapy in palliative and end-of-life care is 

advent of protease inhibitor combination therapies caused the same d

ments in children that were observed in adults with HIV/AIDS. And in 

are seeing the same disappointments when HAART does not achieve 

sion.

However, laboratory values do not tell the whole story. We see immunol

ent absence of virologic control. We see clinical improvement in the 

improvement. Clearly these changes translate into improved quality 

patients with HIV/AIDS. When highly active combination therapies fail 

well or cause intolerable pill burden or side effects, they should be dis

regimens can be considered if they offer some slowing of disease pr

burden. These regimens would not be considered if decisions were ba

treatment history and genotypic analysis. But in palliative care, we ha

the patient first and offer care that is helpful, even if it is not “standard

Withholding or Withdrawing Life-Sustaining Therapies

A broad range of invasive, high technology therapies are used in p

functions while a child recovers from injury, surgery, or treatable illne

artificial ventilation play an important role in supporting children wi

crises. However, the use of such therapies should not be automatic, ju

routinely withheld. The likelihood of benefit must be considered and b

and burdens of the intervention. This balance will shift over the co

trajectory.

The values and beliefs of the child and family regarding life, illness, suff

foundation for their consideration of our medical information and re

and health care providers alike need to know that they have done every

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Providing Care: Who and Where?

Most care for children and adolescents occurs in the home. Home i

fort where family members come together to love and care for the ch

pediatric home care and hospice care are based on this foundation. 

provide in-home assessment and training, permitting parents and ot

provide even highly technical and specialized care outside the hospita

Accessing home care or hospice services is sometimes difficult depend

insurance and health status. Many insurance plans require patients to b

home care services. Yet the health care provider’s goal of keeping childr

in a developmentally appropriate way may clash with traditional defi

Advocating that services should be rendered and reimbursed based on n

setting is consistent with pediatric principles of care.

Unfortunately the AIDS epidemic has disproportionately hit vulnerab

meet this pediatric ideal. Some children live with parents who also h

ease, with resulting weakness, confusion, repeated hospitalizations, an

be serial caregivers both short and long term, causing discontinuity in 

medical care. Some children live in substandard housing, some withou

of these conditions is a contraindication to home care if there are c

available to provide care for the child. Palliative care is generally “low 

on “high touch.” As long as the child is warm, dry, safe, and comforta

care can be addressed.

In situations where there is no reliable adult and no safe place to live

dential and inpatient alternatives. These are in particularly short supp

almost no pediatric hospices in the United States. Adult hospices are 

pediatric inpatients.

Home hospice services vary in their capacity and readiness to provide 

At a minimum, they need pediatric training and backup to provide ped

We should look for opportunities for partnership between communit

and children’s hospitals or other pediatric specialty and tertiary care faci

to care for these children and adolescents.

Health Care Decisions

Collaboration with the Family

Making good decisions depends on the collaboration of the patient, 

providers. Each person brings unique information and perspective to th

along the disease trajectory. Identifying these key individuals and prep

effectively is a critical component of palliative care.

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• Implications for the patient’s daily routine and level of comf

• Any restriction of activities

• The “downside” of each option such as side effects, need for 

hospitalization

• The alternatives, including “doing nothing”

One way to think about this process is to imagine standing at a fork in 

which pathway to take. What is the destination? Do all paths lead to th

nations? What good or bad things might be encountered along the way

and flat or steep and rocky? What if there is an unanticipated problem

the way, you get a flat tire, the weather turns cold and wet? Can you 

point of no return? What is unknown?

Providers must have specific knowledge of treatments for specific pro

swer questions including the following:

• Which medicines can be used to treat this problem?

• What are the dose, route and schedule?

• What are the side effects and interactions?

• Can this problem be treated at home? As an outpatient? As a

• How long will the treatment last?

• How likely is it to work?

• How will you know if it worked?

• Will the problem recur?

• What will happen if no medicine is given?

These are considerations for each treatment we offer throughout the 

ease. Practicing conscious consideration of all the relevant issues fro

lays a strong foundation for open consideration of all issues at advanced 

choices are made may change over time as the patient’s disease pro

Health Care Decisionmaking: Case Example.)

It is critical for the treatment team to discuss all the options and co

presenting information to a patient and family. Hearing conflicting and 

causes distress and confusion for patients and families. As HIV disea

more body systems and therefore more specialists. The burden for org

tiple specialists and making coherent recommendations falls to the 

vider. This burden should not be shouldered by the patient and family

The process of decisionmaking is collaborative. Health care providers ne

option they think is the best for this particular patient at this particul

some patients and families will disagree and choose another option, an

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Table 12-7: Health Care Decisionmaking: Case Example

Situation Mary is a three-year-old with advance

central line infection. She has candida 

diarrhea, neurodevelopmental delay, and 

to previous difficulty with peripheral and 

her line is currently her only venous 

antibiotics and parenteral nutrition. H

lower than usual and the house staff are 

to the ICU for pressor support.

What are the options? 1. Transfer to the ICU for full support

2. Maintain current level of care

3. Arrange home hospice care

Analysis Any of these options might reasonably b

sis and parent-provider collaboration a

Option 1 provides the best chance of f

sepsis. But it has its own bur

transfer to a new unit, discon

care personnel, an increase

procedures, and a risk of comp

is not guaranteed.

Option 2 allows her to remain in a fami

but may not effectively treat he

Option 3 provides the opportunity for 

to shift the focus of care to bei

family for the precious time s

Including Children in Decisions

The ethical tenet of autonomy supports the inclusion of even young chil

ing their health care. There is a strong tradition within the field of pe

dren of all ages in a developmentally appropriate way about what is 

often excellent sources of information for how they are feeling and w

tolerate. They are better able to cope with treatments and procedures 

ported for these interventions.

The legal age of majority varies from State to State and with the clinica

allow minors to seek care for certain conditions, such as sexually tran

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participate in their care planning. Just as with physical and emotional 

oping ability to understand, ask questions, consider future implicatio

yes/no switch. Hence it is unnatural to assume that a 15-year-old has 

care is best for her or him, just as it is unnatural to assume that an 18-

the support of family or friends when considering life-threatening issu

Disclosure of HIV Diagnosis to Infected Children and Ado

It is assumed in our western culture that adult patients with life-thre

been informed of their diagnosis and treatment options, and offered so

true for children and adolescents. Well-meaning adults often try to “pr

the truth. They believe that sharing this information will take away th

live. However, decades of experience in the field of pediatrics support 

Children with cancer diagnoses, the most commonly studied, are better p

if they receive developmentally appropriate information about what is h

and why. Providing developmentally appropriate choices and control ove

a child’s ability to cooperate and make choices that best enhance his 

Only the patient himself or herself can say what is most important, wh

This truth holds, regardless of the age of the patient. If we approach a

viduals and communicate in the most effective and appropriate way f

better opportunities for all patients to participate meaningfully in the

With young HIV/AIDS patients, anticipating questions early in the dise

mation to be shared in stages of increasing complexity and detail (se

above). For most children, information about whether they need blood 

hospital, or how many medicines they have to take, is most critical. 

cussed in great detail without disclosing the name of the diagnosis

advances, more detailed information about what blood tests are or 

comes appropriate. Ultimately, describing and naming the child’s heal

or her to become a partner in care.

The fear of telling is primarily an adult fear. We fear the reaction we 

questions we cannot face answering. We fear our own emotional react

project that onto the child. We fear that the secret will be shared wit

force us to face the truth when we would rather brush it aside for a

should not be held captive to our fears. Information and inclusion n

child’s interest and ability to be involved. Information should not be w

not be forced.

There are natural opportunities to disclose information to a child. Th

obvious one. This is the time when health professional and parent are 

makes sense that the person who owns the diagnosis should learn abo

time of diagnosis can be fraught with so much emotion among the adul

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office more often than their friends do. It is critical at these times t

including partial truths only if that is all that the adult can provide at 

is better to say, “You need to ask Dr. Smith about that” than to lie to a 

know they can trust the adults in their lives, and this need increases as ch

Another natural opportunity to discuss a diagnosis occurs when therap

cially when they are becoming significantly more complex. Children 

about why this change is occurring. It is respectful to answer this quest

mentally appropriate way. These natural opportunities are far prefer

HIV or AIDS diagnosis to times of crisis, such as hospitalization or adm

onset of sexual activity.

Sometimes providers encounter parents or guardians who refuse to te

the children enter mid-adolescence. This is clearly beyond the rang

protectiveness and requires active intervention by a health care team 

to the adolescent. Awareness of his or her diagnosis is a prerequisite f

adolescent in decisions about his or her care at the end of life.

Including Guardians in Decisions

Guardianship is where many child and adolescent patients are left i

serial caretakers and the current caretaker may lack a sense of the ch

ues. The guardianship may not be clear or well documented. The guard

agency rather than an individual adult with an investment in the well

Providers should take practical steps to determine who should partic

regarding an infected child or adolescent’s health care, based upon 

questions:

• How old is the child?

• What is his or her ability to understand the issues at hand?

• With whom does he or she live? Who is the responsible adult

Is there a responsible adult at all? Is the role shared, or doe

among family members?)

• Is a parent still living. If so, does she or he have parental rig

parent been involved in the child’s life?

• Is the adult with whom the child lives a relative? Has that pe

been granted guardianship? The health care provider should 

copy of the court order.

• Is the child in foster care? Living with a family? Long-term? 

Usually a foster parent at best has limited guardianship for p

enrolling the child in school and seeking routine medical ca

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have the competence and capacity to make health care deci

with advanced HIV disease experience complications that di

capacity, such as dementia (memory loss, confusion). Many 

raised by grandparents or other senior family members. The

now be facing their own health concerns, which may include 

Supportive Care for Children Affected by HIV/AIDS

AIDS is a family disease. More than any other, this disease tears at 

able families, causing illness and death within and across generation

family members, whether infected with HIV or not, are deeply affected 

others. Grandparents may continue to care for surviving grandchildren 

emotional needs, even while they are themselves aging and encounter

lems. As the elder caregiving generation dies, the children left behind 

of losses. (See Chapter 16: Grief and Bereavement and Chapter 20: Ca

One of the most heart-wrenching situations is a dying mother who cann

ing children will be safe, loved, and cared for. Permanency planning is 

difficult responsibility for parents with life-limiting conditions. Care 

age and support parents to honestly consider the possibility that they 

die. There are concrete steps that parents can take to plan for their ch

guardianship (see Chapter 18: Legal and Financial Issues) was created 

epidemic to enable HIV-infected parents to identify another trusted 

children in the event of temporary or permanent disability or at the ti

living in States with these statutes, this process facilitates seamless tra

to care for children at a time of crisis. When planning has not been done

in foster care. Siblings may be separated. Placements may change repe

losses can be catastrophic for children who have just lost a parent.

Legacy building can occur when families acknowledge the possibility th

Parents can write letters or leave videotapes for their young children to 

are older. Hand molds can be made, regardless of the age of the dying 

sakes for those who survive him or her. Photographs, artwork and poe

cache of memories. Creating these legacies can be directly benefici

dying and are enormously valuable to those whom he or she leaves beh

Communication

Clear and effective communication is a mandatory component of pa

gral to excellent care that commenting on it seems to state the obvious

able distress and anger on the part of patients, families, and care pr

ineffective or nonexistent communication. (See Chapter 21: Patient-Cl

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• Different views of a patient’s health status

• Different views of the options for treatment and care

• Different levels of skill in communication

• A lack of unified or continuous information systems

The benefits of effective team communication among providers includ

• Greater efficiency

• Greater satisfaction

• Reduced errors

• More complete assessment of the patient

• More coordinated treatment

• Improved discharge planning

Important communication occurs within family units. In optimal sit

relationships among family members are clear and supportive of provi

child patient. Unfortunately, there are families in which relationships a

erupting into arguments at the child’s bedside. In other families, th

family communication and involvement may be almost invisible to the 

about a family’s communication, and supporting ongoing communica

facilitate the best assessment and plan for care for all concerned.

Communication with the child patient is discussed earlier in this chap

The child is the patient and deserves to be the center of attention. A

information, and supporting the child’s inclusion and involvement in 

should be tailored to the child’s developmental and physical capacity 

munication between the health care team and the child-family team t

for success.

Impact on Pediatric Health Care Providers

This chapter is not complete without acknowledging the deep commi

care professionals to promoting the best care for children and adolesce

by HIV/AIDS. This work is as deeply rewarding as it is remarkably diffi

the best palliative and end of life care, we must know and understand 

which we work.

Death remains the exception in the practice of pediatrics. Just as it is 

predecease their patients, so it is unnatural for our child patients to 

now increasing, providers receive little training in how to care for child

dying. This often leaves us feeling incompetent to provide the expert c

deserve.

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tion administration? Do we recommend, or insist on, a child being remo

because her failure to assure medication adherence is medical negle

change depending on where the child is on his or her disease and treat

enough enough, despite sub-optimal social circumstances? How can we 

feel we have “done everything” we should to control our patient’s HIV, a

wherewithal to provide palliative and end-of-life care? We must continue 

to define a path to walk with our patients and their families.

REFERENCES

1. World Health Organization. Cancer Pain and Palliative Care in Children. Gen

Organization, 1998.

2. Bartlett JG, Gallant JE. 2000-2001 Medical Management of HIV Infection. Balt

University, Division of Infectious Diseases, 2000.

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288 U.S. Department of Health and Human Services • Health Resources and Services Administ

Armstrong-Dailey A, Goltzer SZ, eds. Hospice Care for Children. New York: Oxford U

Christ GH. Healing Children’s Grief. New York: Oxford University Press, 2000.

Goldman A, ed. Care of the Dying Child. Oxford: Oxford University Press, 1994.

McCue K, Bonn R. How to Help Children Through a Parent’s Serious Illness. New Yo

Milch RA, Freeman A, Clark E. Palliative Pain and Symptom Management for Child

Alexandria: Children’s Hospice International, 1985.

Siberry GK, Iannone R, eds. The Harriet Lane Handbook, 15th ed. St. Louis: Mosby, 2

Yaster M, Krane EJ, Kaplan RF, Cote CJ, Lappe DG, eds. Pediatric Pain Managemen

St. Louis: Mosby-Year Book, 1997.

World Health Organization. Cancer Pain and Palliative Care in Children. Geneva: W

1998.

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Christina M Puchalski, MD, and Rev. Carlos Sandoval

INTRODUCTION

■ Illness is a major life event that can cause people to question thems

their meaning in life. It disrupts their careers, their family life, and th

selves; three aspects of life that Freud said were essential to a healthy 

people to suffer deeply. Victor Frankl noted when writing about con

that survival itself might depend on seeking and finding meaning:

Man is not destroyed by suffering; he is destroyed

by suffering without meaning.1

Palliative care has long recognized that, in addition to physical and 

patients with advanced illness will suffer existential distress as well. Ex

ably the least understood source of suffering in patients with advanced 

questions regarding the meaning of life, the fear of death, and the rea

separated from their loved ones.2

 These issues take on greater importa

of the stigma and judgment that still accompany people living with th

In our own clinical experience, we have found that people cope with 

meaning in it. Spirituality plays a critical role, because the relationship w

or concept can give meaning and purpose to people’s lives, to their joys 

A number of surveys and studies demonstrate the importance of consi

health care of patients and document the relationship between patien

lives and their experiences of illness and disease.3, 4 These findings ar

the delivery of palliative care.5, 6 From the very early years of the mo

spiritual aspects of health, illness, and suffering have been emphasize

Several studies support the relevance of spirituality in the care of seri

A 1997 Gallup survey showed that people overwhelmingly want their s

when they are close to death. In its preface, George H. Gallup, Jr., 

message that emerges from this study is that the American people wan

the spiritual dimensions in dying.”7

 Other studies have found spiritu

factor in coping with pain, in dying, and in bereavement.8, 9 Patients w

found comfort from their spiritual beliefs were, for example, more satis

happier, and had diminished pain compared with those without spiritu

Pain Society survey found that prayer was the second most common met

after oral pain medications, and the most common non-drug method o

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pg g

• If life to this point has been meaningful 12

In HIV, patients struggle with existential crises as do other patients w

ever, the social stigma of the illness may affect how patients view the

those patients who are religious. In a study of patients with HIV, th

active had less fear of death and less guilt about their illness. Fear 

among the 26% of religious patients in this study who felt their illness 

God. Fear of death diminished among patients who had regular spiritua

that God was central to their lives.13

WHAT IS SPIRITUALITY?

■ In a study of spirituality among the terminally ill, Reed asserted, “

terms of personal views and behaviors that express a sense of relate

dimension or to something greater than self.”14 Another, more clinical

Spirituality is recognized as a factor that contributes to h

many persons. The concept of spirituality is found in all 

societies. It is expressed in an individual’s search for ulti

meaning through participation in religion and/or belief i

family, naturalism, rationalism, humanism, and the arts

factors can influence how patients and health care profes

perceive health and illness and how they interact with on

How people find meaning and purpose in life and in the midst of sufferi

spirituality takes, its active practice can help patients cope with the un

instill hope, bring comfort and support from others, and bring resol

cerns, particularly the fear of death. It is important that the palliativ

honors all approaches to existential concerns. This requires open-mind

ity, and a willingness to learn from the life experiences of others.

For many, these existential questions are mainly expressed in a form

deity, the theology of the religion, the concept of an afterlife, and the ri

religion used to express those beliefs. Many religions have a rich tra

giving meaning to the cause of suffering and in restructuring sufferin

ence. Addressing the role of religion in medicine in the first decade of 

Osler wrote:

Nothing in life is more wonderful than faith, the one grea

force which we can neither weigh in the balance nor test i

crucible. Intangible as the ether, ineluctable as gravitatio

radium of the moral and mental spheres, mysterious, ind

known only by its effects, faith pours out an unfailing str

energy while abating nor jot nor tittle of its potency.16

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ing more I can do for you” comes out of that medical “fixer” model. In 

do for our patients, and it is also our obligation as physicians “to cont

even when disease-specific therapy is no longer available or desired.”

care becomes so critical. It allows us to care for our patients even whe

The basis, then, of spiritual care is compassion—being present to ou

their suffering. By being present and caring for our patients, we conn

als. That interconnectedness at the level of our humanity helps to p

to our patients. By discussing issues of suffering, spiritual values, a

tients, we provide them the opportunity to find a sense of resolutio

ness; we help them heal. At its core, palliative care recognizes that 

when cure or recovery is impossible. Although illness may disrupt a 

offer a person the opportunity to see life in a different way. Many 

terminal illness talk of seeing a richness and fullness in life that the

Some people find new priorities in their life and new appreciation for 

they never noticed before.

In dying, for example, healing or restoration of wholeness may be mani

set of meaningful experiences while very ill and a peaceful death. In ch

be experienced as the acceptance of limitations.18 A person may look to 

his or her suffering, and, when the medical system fails to do so, begin t

for meaning, purpose, and understanding. It is the combination of bot

care and good spiritual care that can provide the best chance for heali

SPIRITUAL CARE

■ It is important to include a spiritual assessment or history as pa

assessment of a patient. Doing so enables the provider to assess spirit

mobilize appropriate spiritual care, and enhance overall caregiving. 

been included in coursework on spirituality and medicine19 and is perfo

clinicians in the U.S.

The acronym FICA—for faith and belief, importance, community, and 

helpful for structuring an interview regarding a patient’s spiritual view

format providers can use for a FICA interview.

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“Do you have spiritual beliefs that help you cope with 

If the patient responds “no,” the physician might ask, “What gives 

I Importance and Influence

“What importance does your faith or belief have in yo

“Have your beliefs influenced you in how you handle 

“Do you have specific beliefs that might influence your health 

C Community

“Are you a part of a spiritual or religious community? Is this of sup

“Is there a group of people you really love or who are impo

Communities such as churches, temples, and mosques c

strong support systems for some patients.

A Address/Action in Care

“How should the healthcare provider address these issues in y

Referral to chaplains, clergy and other spiritual care p

Source: Reprinted with permission of Christina M. Puchalski, MD. Copyright 1996.

Providers can obtain more information about spiritual assessment an

Washington Institute for Spirituality and Health (GWish), 2300 K Stre

ington, D.C. 20037, (202) 994-0971; www.gwish.org.

A compassionate spiritual assessment helps to integrate spiritual co

plans. Clinicians should strive to discuss these concerns in a respe

rected by the patient. Providers should always respect patients’ priv

spirituality and religion and must be vigilant to avoid imposing thei

can encourage religious and spiritual practices with their patients i

ready part of the patient’s belief system. However, a nonreligious pati

engage in worship any more than a highly religious patient should b

church attendance.20, 21

Patients may ask health care providers to pray with them. It is appropr

silence or a prayer. Not respecting such a request may leave the patient 

ment. If the provider feels conflicted about praying with patients, he o

quietly as the patient prays in his or her own tradition.

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counseling, yoga, religious ritual and prayer.

Appropriate referrals to chaplains and other pastoral care providers 

healthcare practice as are referrals to other specialists. It has been 

with patients about spiritual matters should be initiated solely by chap

that healthcare providers can use spiritual histories as a screening to

that a patient’s beliefs play in his or her health and illness. Some pa

cated ethical and spiritual issues. Providers need not feel that they mu

most physicians are not trained to deal with complex spiritual crises 

and other spiritual caregivers are, and often work with physicians in t

It is important that healthcare providers be aware of their own value

particularly toward their own mortality. A spiritual perspective on care 

cian-patient relationship is ultimately a relationship between two hu

personal mortality enables a provider to better understand and empath

is facing, to better handle the stress of working with seriously ill and d

deeper and more meaningful connections with the patient.

PASTORAL CARE

The Role of the Chaplain

In recent years the chaplain has become an increasingly important m

team. Traditionally, the role of the chaplain has been to administer to th

and rites particular to the patient’s religion. Today the role of a chapla

The chaplain can act as an extension of the patient’s personal and com

as well as be a source of spiritual support for the patient. When the 

presence in a healthcare setting, the opportunity exists to provide sup

William Hulme, a Christian minister and author, defines pastoral care 

Pastoral care is a supportive ministry to people and thos

who are experiencing the familiar trials that characteriz

such as illness, surgery, incapacitation, death and bereav

It is the spiritual aspect of human nature that raises questions abou

purpose, questions for which medicine and science have no answers

unique language in which symbolism, story, and ritual are often involve

tise in this form of communication and are often best able to answer s

Some of these questions and concerns might be stated in the language 

the patient might invoke God, and in this instance statements of faith w

the questions. At other times, questions dealing with the purpose of 

appropriately answered in existential terms. The chaplain can deal wit

how the world works, spirituality, and what we consider the essence o

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practitioner before making a referral—not all religious practitioners 

autonomy and respecting divergent points of view. A chaplain certified 

cation (CPE) is a good referral. CPE-certified chaplains have been tra

tual issues presented in a clinical setting. Chaplains are not necessar

can be, but all CPE-certified chaplains know how to work with patient

or spiritual beliefs. These chaplains can also work with atheists and a

More information about chaplains can be obtained from the following 

• National Association of Catholic Chaplains, 3501 South Lake 

07473, Milwaukee, WI 53235-0900, www.nacc.org

• Association of Professional Chaplains, 1701 E. Woodfield Roa

Schaumburg, IL 60173, www.professionalchaplains.org

Dying patients have no control in the progress of their illness, and enab

in the relationship is especially important.23

Pastoral Care Models

Health practitioners working in hospitals and other institutions sho

els of pastoral care. There are basically two approaches: denomination

denominational model, the chaplain of a specific religious denominat

patients of his or her faith or denomination. Though this is the more p

model, a disadvantage is that it is logistically difficult for the chaplain 

treatment team. In the one-for-all model, a chaplain is designated to o

in the clinical setting, becoming part of the treatment team and provi

patients and staff on the assigned unit. The disadvantage of the one

chaplain may not be able to meet the specific needs of all denomination

tions provide a mixture of these two systems as a way of offering a conti

and meeting specific denominational needs.23

Religious Counseling

For patients who are not religious, there are many nontraditional f

sion that the pastoral care provider can offer or that the patient may alr

help the patient have a sense of meaning and connectedness with th

include the practice of meditation or guided imagery, journaling and t

poetry, and other creative arts such as music and gardening.

For religious patients, one of the services that chaplains can provide 

This is defined as the explicit interaction between the chaplain and 

patient and family members. It consists of four main tasks: assessment

intellectual faith support, and interpretation.23

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primarily involved in making sure we get by. The patient’s perceptio

suffering, and death can be significantly influenced by these beliefs.

If the patient is not religious, it is important to find out about other s

tices. In either case, religious or spiritual, what may ultimately give a pa

and purpose may be within the context of the particular identified b

context. Patients may talk of career, relationships, pets, or other aspec

tions to a community, religious or otherwise, may be important to p

should, therefore, enable the chaplain to ascertain the parts of the pa

are supportive, as well as those that may hinder the patient’s coping 

hospice setting, there are CPE-certified chaplains who know how to fa

nection with patients’ religious communities.

Emotional Faith Support

The chaplain’s role also includes supporting the patient’s faith system as i

it, and helping the patient deal with the emotions related to issues of 

tries to reinforce the positive aspects of the faith system by accepting 

also by clarifying them. A patient who is having doubts in his or her fai

he or she is in needs to be reassured that these doubts are normal and 

need to feel that there is hope, if not for physical healing, then certain

not be abandoned, will be able to bear their sufferings, and will always 

their caregivers and the community.

In summary, emotional faith support is not intended to change the pat

help the patient maximize the support it provides.24

Intellectual Faith Support

Intellectual faith support involves changing the patient’s faith system 

tive aspects rather than simply supporting it. This is a cognitive proce

tient and the chaplain work together to change parts of the patient

agree are not helpful.

Interpretation

The final part of the religious counseling is the interpretive function 

volves representing the faith issues and systems of patients to the staff

cation can be achieved and proper medical care can be administered

respecting the traditions and beliefs of the patients. The medical staf

tion on certain religious beliefs and customs that are foreign to them

Jehovah’s Witnesses about receiving blood, or the beliefs of Santería, a

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RELIGIOUS AND CULTURAL RITUALS

■ Every faith or cultural tradition is rich with practices and rituals th

the believer, particularly in moments of crisis. The most common religi

patients have set times in the day when they pray and are helped by 

cluded in their care plans so that the ritual is facilitated.

It is entirely appropriate (and should be encouraged) to invite care

pray with their patients to do so, if the patients agree to it. Prayers n

can be a single thought or a wish that the patient and caregiver hav

may be a simple blessing or simply the silent presence of the care

articulates the prayer.

Along with prayer, the reading of texts sacred of the patient’s spiritual 

support. This too should be included in the care plans so that the patie

this reading. When a patient is too infirm to read texts on his or her ow

read to the patient from the selected texts.

Both prayer and reading serve as effective methods of relaxation. The

that patients may find comfort in from their own cultures, and some fa

rituals they have created themselves.

Other rituals can be provided either by the chaplain or by the patie

leader. It is important that there be good communication between cha

patient’s community in order to help the patient remain connected wit

Religious and cultural beliefs may impact practical decisions as well. F

an important aspect of a patient’s religious observances. Many hosp

meet these special dietary needs as long as the patient’s health is not 

gions recommend that articles of clothing be worn in the hospital or o

bodies of the deceased once death occurs. Chaplains are good resource

tion, as is a resource booklet prepared by The University of Virginia H

Whatever form it takes, the active practice of spirituality can bring 

concerns, particularly the fear of death.

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All care providers (doctors, nurses, chaplains, social workers, therapist

ties) can participate in the spiritual dimension of a patient’s life. Each 

deal with spiritual issues in a different way. The interdisciplinary mod

includes spiritual support is intended to ensure that patients receive th

nity for healing possible in a compassionate, caring health care system

Chpt 13 1-17-03.p65 1297
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1. Frankl VE. Man’s Search for Meaning. New York: Simon and Schuster, 1984.

2. Doyle D. Have we looked beyond the physical and psychosocial? J Pain Sympt

3. Levin JS, Schiller PL. Is there a religious factor in health? J Relig Health 26:9-

4. Levin JS, Larson DB, Puchalski CM. Religion and spirituality in medicine: resea

JAMA 278:792-3, 1997.

5. Puchalski CM. Spirituality and end of life care. In Berger AM, Portenoy RK, We

Principles and Practice of Palliative Care and Supportive Oncology, 2nd ed. Ph

Williams & Wilkins, 2002.

6. Cohen SR, Mount BM, et al. Quality of life measurement in end of life care. Pal

7. The George H. Gallup International Institute. Spiritual beliefs and the dying pro

survey. Conducted for the Nathan Cummings Foundation and the Fetzer Institu

http://www.ncf.org/reports/rpt_fetzer_contents.html. Accessed 20 Dec 1996.

8. Cook JA, Wimberly DW. If I should die before I wake: religious commitment and 

child. J Sci Study Relig 22:222-38, 1983.

9. Roberts JA, et al. Factors influencing views of patients with gynecologic cancer 

Am J Obstet Gynecol 176:166-72, 1997.

10. Yates JW, Chalmer BJ, St James P, et al. Religion in patients with advanced can

Med Pediatr Oncol 9:121-8, 1981.

11. McNeill, JA, et al. Assessing clinical outcomes: Patient satisfaction with pain ma

J Pain Symptom Manage 16:29-40, 1998.

12. Cohen SR, Mount BM, Strobel MG, Bui F. The McGill Quality of Life Questionna

of life appropriate for people with advanced disease. A preliminary study of vali

Palliat Med 9:207-19, 1995.

13. Kaldijian LC, et al. End-of-life decisions in HIV patients: the role of spiritual be

14. Reed PG. Spirituality and well-being in terminally ill hospitalized adults. Res N

15. Association of American Medical Colleges. Report III, Contemporary issues in m

medicine. Medical School Objectives Project (MSOP). Washington, DC: Associ

Colleges, 1999, pp. 25-26. Available at www.aamc.org/meded/msop/report3

16. Osler W. The faith that heals. Br Med J 1:1470-2, 1910.

17. Association of American Medical Colleges. Report I, Learning objectives for me

guidelines for medical schools. Medical School Objectives Project (MSOP). Wa

Association of Medical Colleges, 1998. Available at www.aamc.org/meded/msop/

18. Puchalski CM. Touching the spirit: the essence of healing. Spiritual Life 45:15

19. Puchalski CM, Romer AL. Taking a spiritual history allows clinicians to understa

J Palliat Med 3:129-37, 2000.

20. Post SG, Puchalski CM, Larson DB. Physicians and patient spirituality: profess

competency, and ethics. Ann Intern Med 132:578-83, 2000.

21. Lo B, Ruston D, Kates LW, et al. Discussing religious and spiritual issues at the 

for physicians. JAMA 287:749-54, 2002.

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U.S. Department of Health and Human Services • Health Resources and Services Administration • H

25. Fitchett, G, Handzo G. Spiritual assessment, screening, and intervention. In: Ji

Psycho-oncology. New York: Oxford University Press, 1998.

26. University of Virginia Health Science Center. Religious Beliefs and Practices Af

Charlottesville, Virginia: Department of Chaplaincy Services and Pastoral Educ

Chpt 13 1-17-03.p65 1299
Chpt 13 1-17-03.p65 1

300
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

Rev Carlos Sandoval, MD

INTRODUCTION

■ What is culture? Culture refers to learned patterns of behaviors, bel

individuals in a particular social group. It provides human beings with 

framework for understanding experience.1

 When we refer to culture 

usually think about a group of people with similar ethnic background, l

values, and life views.

Culture and nationality, however, are not synonymous. The United State

try made up of individuals from many countries and traditions, each w

many years we have viewed this country as the great “melting pot” of 

vision is being rejected.2

 The truth is that the U.S. is a multicultural or 

up of members of different ethnic, racial, religious or social groups, liv

aspects of the dominant U.S. culture, but maintaining their own value

Since culture provides individuals with a framework for understanding 

importance to consider culture in the medical setting. Each cultural 

about health, illness, and health care practices.3

 These views affect ho

illnesses and their symptoms, including pain; identify and select medic

prescribed care.4, 5, 6

In his acclaimed book, How We Die, S.B. Nuland said

There has never been a disease so devastating as AIDS. 

ence has never before confronted a microbe that destr

cells of the immune system whose job it is to coordina

resistance to it.7

As the HIV epidemic enters its third decade, rates of infection contin

world and in certain minority communities in the U.S. While HIV has o

the leading cause of death for persons between 25 and 44 in the U.S.,8

 th

parts of the developing world, particularly sub-Saharan Africa. In the U

ing a disease of minorities, particularly African Americans and Hispan

Considering the impact of culture is very important in managing HIV di

the epidemic, a diagnosis of HIV infection or AIDS is universally fear

HIV are well known and they are usually associated with increasing deb

the disease progresses. In addition, HIV often has psychosocial cons

and can lead to subtle or overt discrimination, abandonment by family a

ment and other negative consequences. In spite of the advances in med

Chpt 14 1-17-03.p65 1301
302 U.S. Department of Health and Human Services • Health Resources and Services Administ

the scope of this chapter to cover all or even any culture in the U.S

focusing on Hispanic and African American cultures is, rather, to incre

important aspects of these cultures as well as to exemplify the impor

ables can play in the delivery of palliative care.

HISPANIC CULTURAL VALUES AND HIV DISEASE

■ In 1990, the Census Bureau reported that there were about 22 millio

the U.S., comprising about 9% of the total population. In the subsequ

population grew an estimated 58% to represent about 31 million of the 

panics will soon surpass African Americans as the largest minority gro

The first point that must be considered when referring to Hispanics is 

convenience for a cultural group with a common cultural heritage stem

nization of the Americas.9

 Hispanics can be of any racial group (e.g., in

groid, Asian, Caucasian, or of multiple racial ancestry). Hispanics in

each with important social and cultural differences. The major Hispani

States traditionally have been Mexican Americans, Puerto Ricans an

dramatic increase in Hispanics observed in the 2000 census was fueled 

from Central and South America.

There are some differences among Hispanic subgroups, related to count

racial/ethnic makeup, different histories of immigration to this coun

Puerto Rico, the population’s experience with colonization.10 However

common language, religion, traditional family structure, and several c

Incidentally, Brazilians, a product of Portugal’s colonization in the Ame

and are therefore not Hispanic; however, they too are emigrating to the U

and share many family values and cultural, racial, and religious charac

In addition to differences in subgroups, Hispanics in the U.S. also diffe

acculturation or assimilation into mainstream culture. Language use 

of these differences. For instance, while many Hispanics in the United 

degree to which they speak either Spanish or English varies conside

virtually no English in recent immigrants and many of the elderly, to f

turated Hispanics, to very limited Spanish in second and third generat

terns are observed across different Hispanic cultures.

One value shared by most Hispanics is their religion. Although indivi

and church participation varies, the majority of Hispanics are Christia

Catholic.11 However, many Hispanics practice other religious beliefs tha

into their Christianity, such as forms of ancestor worship with rituals dati

times in Central American Indians. Many Caribbean Hispanics practic

of Catholicism and the Yoruba religion brought to Cuba by African sla

spiritual beliefs include views on dying and death. For example, it is c

Chpt 14 1-17-03.p65 1302
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

role the family plays is the concept of familismo, emphasis of the fami

individual.

In addition to language, religion and family, there are five more cultur

Hispanic culture. These are the following:

• Personalismo:

Trust building over time based on the display of mutual resp

• Jerarquismo:

Respect for hierarchy.

• Presentismo:

Emphasis on the present, not the past or the future.15

• Espiritismo:

Belief in good and evil spirits that can affect health and wel

• Fatalismo:

The belief that fate determines life outcomes, including hea

basically unbeatable.16

An example of the importance of understanding the interaction betwe

HIV disease is the impact of cultural values upon beliefs and norms aro

is an important issue because the majority of HIV and AIDS cases amon

have sex with men.17 Rafael Diaz, in his book Latino Gay Men and HI

tural barriers or competing factors that will have a direct impact on g

men with HIV/AIDS. Among them we have familismo, poverty, and ra

leads Hispanics to care and support family members, it can become a 

tion and abandonment, if homosexuality is perceived as immoral or s

the marginalization caused by poverty and racism will lead Hispanics to 

erlessness, and this, coupled with fatalism, will prevent many from se

care.

End-of-Life Care Preferences

How do Hispanic values, beliefs and practices influence end-of-lif

search is limited, we will review the following: patient autonomy, adv

longing treatments, and the role of hospice. It must be noted, however, 

end of life issues in general, not specifically related to HIV/AIDS. The 

illness cannot be overlooked, and would have a direct impact on some 

Patient Autonomy

In a study in Los Angeles comparing Mexican, Korean, African, and 

several issues relating to patient autonomy, researchers found that Me

cans were less likely to believe that a patient should be told about a ter

Chpt 14 1-17-03.p65 1303
304 U.S. Department of Health and Human Services • Health Resources and Services Administ

comes were more likely to favor truth-telling about the diagnosis.19 In 

exploring general medical treatment decisions with a random sample 

elders in San Antonio, Talamantes and Gomez found that 46% of the el

to make these decisions, 24% would prefer to make their own decision

the decision with their families. When asked whether it bothered them 

lies about these issues, 84% said that it did not.20

Advance Directives

The aforementioned Los Angeles study on patient autonomy among M

and European Americans also compared knowledge on completion of 

found that while Mexican and European Americans were significantly m

Korean and African Americans on advance directives, only 22% of the M

ally possessed advance directives, in comparison to 40% of the Europe

found that the Mexican Americans who had advance directives were m

than the ones who did not.21 Three years earlier, at the University of M

Davis, Wright, and Marcial had conducted a multicultural study exa

ethnicity on attitudes toward advance directives, life-prolonging trea

Regarding advance directives, the researchers found that Hispanic Am

ing of Cuban heritage, were less knowledgeable than African and non-H

regarding living wills.22

Life-Prolonging Treatments

When it came to the issue of life-prolonging treatments at the end of 

that Hispanic and African Americans were more likely than non-Hispan

ing their doctors to keep them alive regardless of how ill they were (42% 

tively). Furthermore, only 59% of Hispanics and 63% of African Amer

prolonging treatment, compared to 89% of non-Hispanic whites.22 This 

due partly to the Bible commandment “Thou shalt not kill;” a religious C

withdrawing or withholding treatment as an infraction of this comman

Hospice

A few studies have suggested that Hispanics are low users of hospice s

to unfamiliarity with hospice, insurance coverage issues, language bar

ences with or distrust of the health care system.23 In addition, Wallace 

that the low utilization of hospice among Hispanics may be due to ph

that is, a physician might not refer Hispanic patients to hospice becau

providing care themselves and believe that hospice might be unnecess

priate.24

Chpt 14 1-17-03.p65 1304
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

the family, social, and religious values associated with Hispanic culture

to speak Spanish will help providers display respect and build trust.10

Second, the provider should include family members in discussions w

palliative care. Needless to say, there may be situations in which the p

have the family included, and this, of course, should be respected.15

Finally, it is important to have open and clear communication with the 

deference and respect to the provider due to jerarquismo may lead 

withhold information or hesitate to communicate honestly. The provide

the patient understands the treatment being offered, and whether he 

the treatment plan.25 This is particularly important when it comes to e

and advance directives, as research indicates that there are several 

discussions on these topics.22, 23, 19 Jerarquismo may lead the patient a

istic expectations as to what conventional treatment can offer. The fa

miracle cure for the terminally ill patient, and thus may refuse to cons

ment options. Further, perceived conflicts between the patient’s reli

withholding of treatment may be addressed and clarified by includ

decisionmaking.

The role of community education cannot be overstated, particularly 

degree of marginalization many Hispanics face due to language, rac

nomic barriers, including legal status. Education should be provided d

team because of the value placed on personalismo, and the target aud

entire community: patients, families, and community leaders, including 

share with the Hispanic community not only general information about 

mation about end-of-life issues, palliative care and the role of hospic

enhanced by identifying members of the community living with HIV/A

els to share their own experiences with the illness. The provider shou

alone for education, since the language used in many brochures may b

of many Hispanics, may only exist in English, or may be poorly transla

Chpt 14 1-17-03.p65 1305
306 U.S. Department of Health and Human Services • Health Resources and Services Administ

Source: Adapted from references 15 and 27.

Emphasis on the well-being of

the family over the individual

Patient isolation due to

family homophobia

Trust-building over time,

based on the display

of mutual respect

Respect for authority

Patient and families may

have unrealistic treatment

expectations

Emphasis on the present, not

on the past or the future

Belief in good and evil spirits

that can affect health and

well-being

Fate determines life

outcomes, including health,

and is unbeatable

Include 

health 

discuss

Learn a

and the

Persona

commu

Check w

withhol

out of d

Patient 

end-of-l

advanc

Patient

healers 

instead 

Patient

to seek 

Familismo

Personalismo

Jerarquismo

Presentismo

Espiritismo

Fatalismo

Chpt 14 1-17-03.p65 1306
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

population even before this country’s independence from England. So

other places in the Americas, particularly the West Indies. More rec

influx of immigrants from the African continent. To one degree or ano

share a legacy of slavery, segregation, and discrimination, and like mos

ence a high degree of unemployment and overall poverty.28

These challenges are reflected in a lower life expectancy and highe

Americans. In a 1996 CDC report, the 1993 age-adjusted death rates for 

higher than those for the Caucasian population for all causes of death c

the 10 leading causes of death. Life expectancy for African American 

than that for Caucasian males; this difference is attributed to higher d

heart disease, cancer, HIV/AIDS and perinatal conditions.29 The life 

American females was 5.8 years less than that for Caucasian females fo

while African Americans only represent 13% of the American populati

portion of annual AIDS cases reported among African Americans exce

The CDC HIV/AIDS Surveillance Report for 2000 reported 13,218 new 

American males, versus 11,466 in non-Hispanic Caucasians and 6,285 

African American Core Values

Despite a long history of adversity, African Americans have remained 

by the importance they place on family, which they view as an exten

community,30 and a series of core values described by Sudarkasa as th

follows:

• Respect:

The respect of others from parents and relatives to elders

or leaders in the community.

• Responsibility:

Being accountable for self and for those less fortunate in on

own extended family and even one’s community.

• Reciprocity:

Giving back to family and community in return for what

has been given to one (mutual assistance).

• Restraint:

Giving due consideration to the family or community/group

when making decisions.

• Reverence:

Deep awe and respect firstly toward God, toward ancestors,

and toward many things in nature.

Chpt 14 1-17-03.p65 1307
308 U.S. Department of Health and Human Services • Health Resources and Services Administ

matter to rest between two parties.

The Role of Religion

Religion is another core value among African Americans, just as it 

torically, the church has been the center of the African American co

single most important institution advocating improvements in health, 

welfare:32

As the center for the extended family, reinforcing the sen

self-esteem within the culture, the church offers opportu

whole family’s development.33

While the majority of African Americans are Protestant Christians, 

Baptist, some are Roman Catholic.34 Certain African American subgroup

from Haiti, have beliefs in voodoo, hexes, curses, which will also have 

care views and practices. The history of deportation from the Africa

oppression in the new world, coupled with their Christian heritage, ha

can Americans view end of life decisions. Many believe in the God of t

powerful and fighting God, who liberated the Hebrews from the oppress

who liberated African Americans from slavery. From this comes the no

thus the belief that God’s power can conquer all and that miraculous 

when all hope seems lost.35 The notion of divine intervention and res

tients to oppose continuing aggressive medical treatment, in order to 

done.36

End-of-Life Care Preferences

How does the African American experience influence end-of-life car

findings indicate that African Americans are less likely than other gr

providers, communicate treatment preferences, complete advance direc

draw life-prolonging treatments in the face of futility.

Issues of Trust

The long history of past and even current discrimination has led Afric

distrust in the institutions established by the dominant Caucasian soci

tutions that provide health care. This institutional distrust is not with

are several studies which document minorities’ lack of access to avail

have suggested that certain procedures such as coronary bypass ope

plants have been performed less frequently on African Americans th

cans.37 A study documented lower survival rates in African Americans 

the second most common cause of death among African Americans, an

Chpt 14 1-17-03.p65 1308
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

treatment to 400 poor African American sharecroppers, is a reminder o

feel they cannot trust the health care system. In fact, one recent study 

males sampled door-to-door showed that 27% believed that HIV/AIDS 

spiracy against black people.41

Discriminatory practices also extend to pain management. In studies in 

such as emergency rooms42, 43 and cancer centers,44, 45 pain severit

underestimated and effective analgesia less likely to be prescribed 

and Hispanics than for Caucasian Americans. These and other studies 

bias on the part of medical care providers. Thus the distrust demonstra

is warranted, as subtle discrimination continues.46 In addition, the 

the medical care received by minorities is less than optimal, wh

American distrust of health care institutions and has affected how 

end of life care.

Communication of Treatment Preferences

The same distrust appears to have inhibited many African Americans fr

cating end of life decisions. In a study of communication of treatment 

AIDS patients, researchers found that Caucasian patients were twice a

can patients to have discussed their treatment preferences with their 

coincidentally, the study also found that African Americans were half a

prefer a treatment approach that focused on pain relief as opposed to e

about proposed palliative treatments may deter African American pa

communication with health care providers. Without adequate commu

family inadvertently give the decisionmaking power to the health care 

a form of “paternalism by permission”48 and decreases patient autonom

Advance Directives

A retrospective chart review of 1,193 frail elderly in South Carolina fo

cans were less likely than Caucasians or Hispanics to have completed a

in another study African Americans were less likely than Caucasian

durable power of attorney for health care.50 While reasons for this are 

medical care in general is of primary importance. If an advance direc

longing therapies is seen by African Americans as yet another way o

adequate health care, then they might be more inclined not to comple

Along with the decreased use of advance directives among African A

hospice services when compared to Caucasians. This is partially due to 

of education regarding hospice care.52

Chpt 14 1-17-03.p65 1309
310 U.S. Department of Health and Human Services • Health Resources and Services Administ

tion for fear that it might result in neglect or being allowed to die pre

In a study comparing attitudes toward life-prolonging treatments amo

eral medicine clinic, only 63% of African Americans approved of stopp

ments, compared to 89% of Caucasians. Furthermore, 35% of Caucasian

assisted suicide, compared with only 16% of African Americans.22 Fina

1993 study found that African Americans were more likely than the gen

life-prolonging treatments, even in the face of a poor outcome.22

Interventions

In view of the long history of discrimination to which African Americ

over the years, the single most important intervention that must be mad

trust and reliability. This ongoing process will require open and con

between the health care provider and the African American commu

more African American health care providers, preferably members of 

help overcome distrust of institutions by the African American comm

better lines of communication between the community and the health 

munity-based organizations should be developed to identify and addres

concerns of local African American communities.

One such organization is the Harlem Palliative Care Network in New 

objectives are as follows:

• To increase access to palliative care services for patients an

families residing in Central and East Harlem who are facing 

life-threatening illness

• To overcome cultural and environmental barriers among min

in receiving timely intervention

• To enhance the continuity and coordination of care through 

tion of community-based and institutional services

• To improve the quality of life for Harlem patients through be

symptom management

• To provide support services to meet the emotional and spirit

patients and their families54

Since research has shown that many African Americans lack knowle

and hospice programs,55 education is of prime importance. Physician

education because many lack knowledge of the broad range of palli

particularly pain management. For this there are resources for up-to-d

care, such as Education for Physicians in End of Life Care (EPEC), ht

Chpt 14 1-17-03.p65 1310
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

AIDS, such as drug abuse, sexual promiscuity and homosexuality, as we

cans overcome the perception that palliative care treatment modalitie

care.56 The church can provide not only spiritual support, but also, 

through its various lay organizations.

Finally, whenever possible, recognition should be made of the role A

members play in the treatment, care, and support of patients living w

family and the core values that bind it together that African Americ

strength and support they need to face end-of-life issues.

CONCLUSION

■ While health care providers treating persons with HIV/AIDS cann

every cultural issue related to medicine, they can become more sensitiv

plays in how people access and experience palliative care services. Re

ture and being familiar with the core values of a cultural group will no

barriers to treatment, but also optimize patient care, particularly end

Chpt 14 1-17-03.p65 1311
312 U.S. Department of Health and Human Services • Health Resources and Services Administ

1. Marshall P. Cultural influences on perceived quality of life. Semin Oncol Nurs 

2. Locke DC. Increasing Multicultural Understanding: A Comprehensive Model

Sage, 1998.

3. Kleinman A, Eisenberg L, Good B. Culture, illness and care. Clinical lessons fro

and cross-cultural research. Ann Intern Med 88:251-8, 1978.

4. Zborowski M. People in Pain. San Francisco: Jossey-Bass, 1969.

5. Chrisman NJ. The health-seeking process: an approach to the natural history o

Psychiatry 1:351-77, 1977.

6. Wood PR, Zeltzer LK, Cox AD. Communicating with adolescents from culturally 

a model based on Mexican-American adolescents in South Texas. Semin Adoles

7. Nuland SB. How We Die: Reflections on Life’s Final Chapter. New York: Vintag

8. Russel S. AIDS death rates fall among adults 25 to 44. San Francisco Chronicl

9. Amaro H. Considerations for prevention of HIV infection among Hispanic wome

Psych Women Q 12:420-43, 1988.

10. Talamantes MA, Gomez C, Braun K. Advance directives and end of life care: the 

In Braun KL, Pietsch JH, Blanchette PL, eds. Cultural Issues in End of Life De

Newbury Park, CA: Sage Publications, 2000, p. 84.

11. McCready WC. Culture and Religion. In Cafferty PSJ, McCready WC, eds. Hisp

A New Social Agenda. New Brunswick, NJ: Transaction Publishers, 1994.

12. Sandoval M. Santeria: Afrocuban concepts of disease and its treatment in Miam

Psychiatry 8:52-63, 1977.

13. Rael R, Koete AO. El ciclo de la vida y muerte: an analysis of death and dying in 

In Applewhite SR, ed. Hispanic Elderly in Transition: Theory, Research, Policy

Westport, CT: Greenwood, 1988.

14. Bastida E. Reexamining assumptions about extended familism: older Puerto Ri

perspective. In Sotomayor M, Curiel H, eds. Hispanic Elderly: A Cultural Sign

Edinburg, TX: Pan American University Press, 1988.

15. Cuellar JB. Hispanic American aging: geriatric education curriculum developm

professionals. In Harper MS, ed. Minority Aging: Essential Curricula Conten

Allied Health Professions. Washington, DC: Dept. of Health and Human Service

(Publication # [HRS] P-DV-90-4).

16. Ferriss S. Fatalismo: a health threat for Latinos. San Francisco Examiner, Jan

17. CDC. HIV/AIDS Surveillance Report. Atlanta GA: U.S. Department of Health an

18. Diaz RM. Latino Gay Men and HIV: Culture, Sexuality and Risk Behavior. Ne

19. Blackhall LJ, Murphy DT, Frank G, Michel V, Azen S. Ethnicity and attitudes tow

JAMA 10:820-5, 1995.

20. Talamantes MA, Gomez C. Knowledge and use of advance health directives by M

Paper presented at the annual meeting of the Gerontological Society of America

November, 1996.

Chpt 14 1-17-03.p65 1312
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1988.

24. Wallace SP, Lew-Ting C. Getting by at home: community-based long-term care o

West J Med 157:337-44, 1992.

25. Spinetta J. Measurement of family function, communication and cultural effect

26. Talamantes, MA. Community education on advance health care directives. Pa

meeting of the American Society on Aging, Chicago, IL, March, 1993.

27. Perkins HS, Supik JD, Hazuda HP. Autopsy decisions: the possibility of conflicti

J Clin Ethics 4:142-54, 1993.

28. Mouton CP. Cultural and religious issues for African Americans. In Braun KL, P

Cultural Issues in End of Life Decision Making. Newbury Park, CA: Sage Publ

29. Gardner P, Hudson BL. Advance report of final mortality statistics, 1993. Month

44(7 Suppl). Hyattsville, MD: National Center for Health Statistics, 1996.

30. McGoldrick M, Hines P, Lee E, Preto NG. Mourning rituals: how culture shapes 

Network Nov-Dec:29-36, 1986.

31. Sudarkasa N. African and Afro-American family structure. In Colle JB, ed. Ant

New York: Collier Macmillan, 1988.

32. Poole TG. Black families and the black church: a sociohistorical perspective. I

eds. Black families. Interdisciplinary Perspectives. Somerset, NJ: Transactio

33. Butler JP. Of kindred minds: the ties that bind. In Orlandi MA, ed. Cultural C

A Guide for Alcohol and Drug Abuse Prevention Practicioners Working with E

Rockville, MD: U.S. Dept. of Health and Human Services, 1992.

34. Ellison CG, Sherkat SE. Patterns of religious mobility among African Americans

35. Lincoln CE, Mayima LH. The African American Church in the African America

Duke University Press, 1991.

36. Mouton CP, Johnson MS, Cole, DR. Ethical considerations in African American 

11:113-29, 1995.

37. Council on Ethical and Judicial Affairs. African American-Caucasian disparities 

263:2344-6, 1990.

38. Bach PB, Cramer LD, Warren JL, Begg CB. Racial differences in the treatment 

N Engl J Med 341:1198-205, 1999.

39. Greenwald HP, Polissar NL, Borgatta EF, McCorkle R, Goodman G. Social factor

early-stage non-small cell lung cancer. Am J Pub Health 88:1681-4, 1998.

40. Lincoln CE. Race, Religion, and the Continuing American Dilemma. New Yor

41. Klonoff EC, Landrine H. Do blacks believe that HIV/AIDS is a government consp

Prev Med 28:451-7, 1999.

42. Todd KH. Pain assessment and ethnicity. Ann Emerg Med 27:421-3, 1996.

43. Todd KH, Samaroo N, Hoffman JR. Ethnicity as a risk factor for inadequate eme

JAMA 269:1537-9, 1993.

44. Anderson KO, Mendoza TR, Valero V, et al. Minority cancer patients and their p

attitudes and practice. Cancer 88:1929-38, 2000.

Chpt 14 1-17-03.p65 1313
314 U.S. Department of Health and Human Services • Health Resources and Services Administ

48. Cross AW, Churchill LR. Ethical and cultural dimensions of informed consent: a 

Ann Intern Med 96:110-3, 1982.

49. Eleazer GP, Hornung CA, Egbert CB, et al. The relationship between ethnicity a

frail older population. J Am Geriatr Soc 44:938-43, 1996.

50. Rubin SM, Strull WM, Fialkow MF, Weiss SJ, Lo B. Increasing the completion of 

attorney for health care: a randomized controlled trial. JAMA 271:209-11, 1973

51. Kjellstand CM, Logan GM. Racial, sexual and age inequalities in chronic dialysi

52. Gordon AK. Deterrents to access and service for African Americans and Hispan

benefit, healthcare utilization, and cultural barriers. In Infield DL, Gordon AK, 

Hospice Care and Cultural Diversity. Binghamton, NY: Haworth, 1995.

53. Young EW, Jex SA. The patient self-determination act: potential ethical quanda

Cambridge Quarterly of Health Care Ethics 2:107-15, 1992.

54. Payne R, Payne TR, Heller KS. The Harlem Palliative Care Network: an intervie

and Terrie Reid Payne, MA. Innovations in End of Life Care 3(5), 2001. On-lin

www.edc.org/lastacts

55. Reese DJ, Ahern RE, Nair S, O’Faire JD, Warren CE. Hospice access and use by 

addressing cultural and institutional barriers through participatory action resea

1999.

56. Strachan-Terrel T. Teaching religion, sexuality, and HIV/AIDS in African Americ

12:724 (Abstract 34192), 1998.

Chpt 14 1-17-03.p65 1314
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

Carla S Alexander, MD, and Helen Schietinger, MA, A

INTRODUCTION

■ People who are young or old, homeless, new immigrants, incarce

from jail or prison may have needs that differentiate them from othe

AIDS. Clinicians should recognize that these needs may prevent suc

routine clinical pathways for palliative care. Individuals within each 

external barriers to being in care. Recruiting and maintaining them i

contact and often involves outreach. Otherwise, patients may fall out of 

pain, and without support.

Young gay men and young heterosexual women, as well as people over 

unique issues that may limit their access to palliative care. Even grea

tered by people who are homeless, those who have immigrated from o

illegally, and individuals who are incarcerated or recently have been re

People with substance abuse problems, who also experience barrier

elsewhere in this guide. (See Chapter 11: Substance Use Problems.)

A need common to all these individuals is assurance that their healthc

and accept their particular circumstances. Establishing a trusting rela

before they will accept care. The following recommended intervention

the vulnerable groups discussed in this chapter and can be crucial i

promoting the individual’s engagement with care:

• Establish a personal connection with the individual during t

• Arrange for the person to meet with a case manager, social w

outreach worker during the initial visit.

• Obtain contact information for at least two people close to t

so that if she or he does not return, follow-up can occur.

• Arrange to be in contact with the person the day following th

at least by phone if not by return visit.

Providing palliative care to special populations has an additional level of 

who are marginalized from society and already underserved by the 

become mistrustful of “the system” or have difficulty understanding 

much less the highly technical aspects of highly active antiretroviral t

who belong to marginalized groups may perceive palliative care as seco

are being offered instead of aggressive acute medical care. Palliative ca

an individual’s empowered choice. The importance of gaining the trus

populations becomes even more apparent when this dimension is add

Chpt 15 1-17-03.p65 1315
316 U.S. Department of Health and Human Services • Health Resources and Services Administ

Adolescents feel omnipotent and immortal, have not completely int

cause and effect, and may mistrust adults in authority. A common a

diagnosis of HIV, which is often given by an adult, is to reject the diagn

ing the issue is avoiding the illness. For young gay and bisexual men, f

tation being revealed because of a diagnosis of HIV might also prevent 

Chapter 12: The Care of Children and Adolescents.)

Young mothers tend to allow their babies’ care to take precedence ove

denial that they might die, young mothers may avoid planning for t

children. (See Chapter 18: Legal and Financial Issues for discussion o

The following interventions may promote adolescents’ acceptance of c

• Offer to assist them with making decisions about disclosure 

parents, children and other family members.

• Arrange for peer support by other teens living with HIV if po

link them with other teens via the Internet.

• Begin discussions with adolescent mothers about who will c

children; bring in other team members and agencies to assis

permanency planning.

Other services that can facilitate a teen mother accepting care for h

skill classes, respite care, family support and homemaker services.1

 Re

about permanency planning are the National Pediatric and Famil

(www.pedhivaids.org) and The Family Center (www.thefamilycenter.o

Older People

Senior citizens may not seek care because they fear the stigma of 

cause they may be dealing with other health problems. The initial dis

might confirm their fears that “nothing more can be done for them.” If 

care at a private physician’s office, they may feel uncomfortable in a c

gay men, who may have lived a “closeted” lifestyle, sharing their sexua

care providers may make them uncomfortable. For example, an older g

fortable receiving palliative care at home because he doesn’t want his p

with his partner.

For people with HIV who are older, the following interventions may be 

• Encourage them to contact the National Association on HIV 

(NAHOF), an organization for both consumers and providers 

newsletter (www.hivoverfifty.org/).

• For patients who resist receiving palliative care services from 

associated hospice agency, consider having their primary ca

provide the palliative care with consultation from a palliativ

agency when needed.

Chpt 15 1-17-03.p65 1316
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

■ A good definition of homelessness is not having a stable residence 

homeless applies equally to a person who has a temporary hotel room p

indigents, a person sleeping in a shelter or in a car, and a person who 

because she or he cannot afford to pay rent. People who are homeless 

nomic, ethnic and demographic characteristics as the general populatio

ing because of their economic situation.2

 However, a high proportion o

street corners in cities and towns across the U.S. suffer from mental 

dency problems, or both.

In some cities, mobile vans or walk-in clinics bring services to the mo

homeless, but in most cities the people must come to the services inste

their health problems are quite severe before going to emergency r

care, which is by definition continuous and involves an ongoing relati

vider and patient, may not be a familiar process.

Providing palliative care to people who are homeless is difficult becau

cal, economic and social problems they already face and because of th

they have the same emotional and spiritual needs as others and can 

type of supportive care throughout the trajectory of their illness.

Medical Care

To provide palliative care to people who are homeless, the clinicia

number of practical matters. The interventions suggested at the begi

essential. Having social workers, case managers, outreach workers an

on the team facilitates these interventions and increases the possib

people to services that can meet their basic survival needs. The followin

help to improve treatment outcomes:

• Relax the clinic structure for people who are homeless.

Individuals who are homeless may be unable to keep appoin

exceptions for certain people, seeing them on a drop-in basi

frequent, shorter visits. Offer incentives such as food vouche

for appointments to increase their motivation to obtain heal

regular basis rather than only when emergencies occur.

• Assess all new patients for homelessness.

When assessing new patients, assume that they might be ho

temporary quarters. Ask whether they go home to the same 

and whether they have a permanent address where they can 

• Consider prescribing small amounts of medication.

Ascertain whether they will be able to keep their medication

shelters or group homes will set out residents’ pills each day

may need to be provided in smaller quantities than usual to 

Chpt 15 1-17-03.p65 1317
318 U.S. Department of Health and Human Services • Health Resources and Services Administ

facilities (e.g., indinavir). All of these practical consideratio

very challenging for homeless patients, with a predictable ad

adherence, should help inform decisions about choosing spe

regimens.

• Monitor closely and frequently.

Be especially concerned about adequate nutrition, appropri

wound care, and the need for personal care. Be ready to hos

people more frequently than other people living with HIV fo

as malnutrition, exposure and wound infection.

• Link with food programs.

Linking homeless individuals with food programs is an impo

In addition, obtaining food or food vouchers to provide to pe

appointments can increase their attendance.

• Link with housing programs.

Clearly, arranging for housing facilitates more effective palli

homeless. Even if the person rejects housing, anticipate the 

protected environment in the future, such as a long-term ca

work slowly towards that goal.

• Be honest and frank.

Be willing to be honest with people who are homeless. Make 

them to mental health and/or substance abuse services if th

appears to warrant such assistance. If they are engaging in s

behaviors, explain how these behaviors are shortening their 

knowledgeable member of your team discuss the merits of h

with both the patient and other staff members.

• Educate about the expected course of disease.

Patients may feel that seeking care is useless if they believe 

Discussing the stage of their illness allows them to begin to 

their own situation. Offer simple, concrete suggestions abou

Sometimes physical deterioration and chronic pain, or the s

prospect of death, can be turning points that motivate peopl

changes. A person might for the first time accept pastoral co

substance abuse treatment, or housing in a hospice facility.

• Discuss advance directives (a medical term not often unde

outside the medical system).

After forming trusting relationships, it will be possible to ask 

if they have thought about what might happen to them at th

clinicians tend not to ask about this, perhaps assuming that 

have limited capacity. However, this denies individuals the o

address the issues of how they want to live and to die. This i

Chpt 15 1-17-03.p65 1318
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

Biological Family

Homeless people frequently have been estranged from their families o

and children. However, when they are dying, they may want to re-es

their families and attempt to mend fences. Clinicians should always as

sons would like to have their family members contacted when it is cl

pected to get better. Although some health care providers may feel unc

not think to ask, resuming contact with family members may be an 

individual’s closure. If a palliative care team is in place, any team mem

patient can ask the initial question and bring in others to share res

through on the patient’s wishes.

It is important to remember that reconciliation can be time-consuming

less person need support, but family members who are contacted may 

estrangement and may need support as they re-establish relationship

dying individual.

Shelter Staff as Surrogate Family

For many people who are homeless, the staff of shelters and other s

support systems. These may be the most consistent, nonjudgmental p

the ones from whom they want comfort when they are dying. It is theref

who should be contacted and included in an individual’s care team. I

service agency staff may need a support group or other bereavement se

their involvement in a single individual’s care, or because they are exp

as numerous clients with HIV become sick and die. The stress and distr

more for people who are homeless and dying can take a terrible toll on 

in community-based agencies. (see Chapter 20: Care for the Caregiver

Other Homeless People

Some people who are homeless have close relationships with other h

have become their families and may become dying person’s caregivers i

this reason clinicians should respect and support close personal relati

alert to potential abuse, such as a “friend” taking the patient’s pain medi

Incarcerated Family and Loved Ones

For homeless people who recently have been released from jail or pris

ships may be with people who are still incarcerated. This may be an un

passionate release” for the dying. Other homeless people may have cl

are in jail or prison. Resolving this isolation is difficult, because the p

prisoners to visit family members on the outside, much less loved ones 

when those people are dying.

Chpt 15 1-17-03.p65 1319
320 U.S. Department of Health and Human Services • Health Resources and Services Administ

higher power. Addressing the spiritual aspects of palliative care is as i

less as with other people.

Clinicians should inquire about the religious background and current s

who are homeless. Sometimes this is the first step toward bringing 

palliative care team, such as pastoral counselors or clergy. Asking t

demonstrates personal interest in patients, but gives them permission 

their lives.

PEOPLE WHO ARE NEW IMMIGRANTS

■ Immigrants come to the U.S. and to other countries from all over t

countries where the spread of HIV/AIDS has been exacerbated by pove

ing in social dislocation and economic disruption; for example, Guat

and Rwanda. Some come seeking safe asylum, while others seek educa

portunities. They all hope for a better life for themselves and their 

already have become infected with HIV.

People living with HIV who have immigrated to the U.S. from other cou

and legal issues that restrict their ability to access and accept pall

issues may include language barriers and differences between their c

mainstream culture upon which the American health care system is 

relate to whether or not they are in the country legally and, if they are, 

endangers their legal status and thus their access to benefits. An ad

whether their visas allow them choices regarding whether to stay in th

to die. Such issues are also relevant for immigrants in other countries

Unless palliative care providers are sensitive to immigrant clients’ cult

identify legal barriers to their clients’ accessing care, they risk losing c

leaving them outside any system of care. The clinician’s first intervent

be immigrants should include assuring them that their relationship w

health care agency is completely confidential. Only then will it be po

individual’s situation and provide referrals to agencies that can provide 

and legal assistance. As with all special populations, obtaining conta

members or close friends is important so that follow-up can take place

Cultural Issues

Immigrants may face many of the cultural issues common to minori

Chapter 14: Culture and Care.) In addition, however, their status as im

some of the issues they face, as opposed to people who have lived in t

time.

Chpt 15 1-17-03.p65 1320
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

cult for them to sort out the complexities of the system upon which the

Family Support

In many traditional cultures, strong extended family networks provide 

become chronically or terminally ill. When individuals, or even nucle

other country, they leave these family networks behind and are left wi

cial and emotional support systems that would normally be available. 

are isolated at a time when they most need family help. Moreover, in ma

privacy is valued, the concept of volunteers becoming involved in per

unacceptable.

Burial

The issue of burial is complicated for people who come from other c

buried in their native soil. Advance planning can help facilitate this, i

specific questions: When a person becomes terminally ill, does he or sh

die to ensure burial there? If a person dies here and the family are avail

to follow their religious and cultural practices in how the body is han

can the body be sent back to their native country? If the cost is pro

available from local agencies that might be used? If there are no fa

arrange for the body to be buried locally? What resources will pay fo

after the body has been sent to the morgue, what are the options?

Africans and African Americans

In recent decades, many people from Africa, the continent most rav

come to the U.S. to study and work. It thus comes as no surprise that s

are HIV positive. Moreover, some immigrants living with HIV come to th

alized countries to obtain up-to-date treatment for their illness. Africa

with African American culture; in many cases, they may be better educ

can patients at the clinics where they receive care. They might feel unc

care providers were to treat them as if they were African American.

Legal Issues

The legal issues confronting immigrants living with HIV may involve 

legal right to remain in a country, but their ability to take advantage o

entitlements available for citizens (see Chapter 18: Legal and Financial 

laws passed in 1996 created much more stringent regulations for immig

referrals to agencies that provide immigration counseling or to experien

so they can learn about their legal options and the services that might 

Chpt 15 1-17-03.p65 1321
322 U.S. Department of Health and Human Services • Health Resources and Services Administ

and Naturalization Service (INS) because of their positive HIV status

citizens talk to an immigration law expert before speaking to the INS. I

that health care providers be able to assure their clients that everyt

everything in their medical records, will be kept confidential and not 

Public Benefits

The U.S. Personal Responsibility and Work Opportunity Reconcilia

created the welfare-to-work program, TANF, described in Chapter 18

sues) established new and complex eligibility rules for public benefits f

law also made several categories of previously eligible legal immigrant

eral public benefits. The illegal immigration reform bill established c

termining the admissibility of immigrants and heightened immigrant

benefits, even legitimately using Medicaid, could jeopardize their abilit

nent residents or U.S. citizens. A recent study determined that immi

apply for Medicaid, even if they are eligible, or to access primary care 

Barriers such as poverty, language differences, and lack of transporta

culties for immigrants in accessing public benefits.4

Legal Resources

Although local resources are absolutely necessary for individuals n

following national resources may be useful for clients in the U.S., as 

tempting to understand their clients’ problems:

• The National Immigration Project of the National Lawyers G

updated version of HIV and Immigrants: A Manual for AID

Providers, funded and distributed by the San Francisco AID

manual provides a comprehensive and detailed presentation 

available free of charge from the San Francisco AIDS Found

426182, San Francisco, CA 94142; phone (415) 487-3080, fax 

www.sfaf.org/policy/immigration/appendix_c.html.

• For referrals to local immigration advocates or for a legal tra

designed for immigration practitioners, contact The Nationa

Project of the National Lawyers Guild at (617) 227-9727 or n

The project lacks the resources to assist individual clients b

advice and information to AIDS service providers.

• To receive an update on public benefits and the rights of non

by the INS, you can e-mail the above-mentioned National Im

at nip@igc.apc.org. Include the following information: name

address, city, state, zip code, telephone, fax and e-mail addr

Chpt 15 1-17-03.p65 1322
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

clients and to create partnerships with AIDS service provide

2105 or contact irsa@irsa-uscr.org

PEOPLE WHO ARE INCARCERATED OR NEWLY RELE

Background

More than two million people are currently incarcerated in jails and 

can Americans and Hispanics constitute an overwhelming 75% of all ne

estimated 8,900 inmates had AIDS and 35,000 to 40,000 inmates were li

ing a prevalence of infection and disease five times higher than that o

The HIV rate among inmates is disproportionately high for racial and 

are as high as 11.3% and 11.1% among Hispanic and African America

compared to 3.7% among white inmates.5

 The proportion of inmates 

region as well as by institution.

As the management of HIV has improved with antiretroviral therapy, H

as well as terminal illness; in either case, palliative care is an importa

ing palliative care within correctional institutions poses unique cha

security in jails and prisons determines how medical care is provided 

tive care, with the goals of preventing further deterioration and maxim

fort and function rather than curing disease, is less readily adapted th

to the rigid hierarchical structure and culture of a corrections environ

security reasons it may be appropriate for most inmates to be transp

putting a dying inmate in shackles would be unnecessary and unreaso

standpoint, corrections protocols may require such treatment.

In 1976 the U.S. Supreme Court ruled that prison and jail inmates ha

while incarcerated.7

 However, palliative care is difficult to provide beh

meets both the individual’s need for symptom relief and the institutio

control.

By definition, compassionate care requires deviation from the correc

are segregation, stigmatization, and punishment. Dying inmates need 

tion, expanded visiting hours with family and clergy, access to special 

routine restrictions.8

Jails and prisons differ in both structure and motivation in terms of h

care to inmates. Jails are temporary quarters for persons who have bee

ing trial, and turnover is generally fairly rapid. Therefore, with nona

cost-shifting can occur; if a medical problem is not immediately addre

discharged without the jail having expended resources. Prisons, on th

nent quarters to which people are sentenced for long periods of time

Chpt 15 1-17-03.p65 1323
324 U.S. Department of Health and Human Services • Health Resources and Services Administ

Palliative Care in Correctional Institutions: Unique Issues

Whether a patient is in jail or prison, certain issues affecting pallia

• Patient autonomy.

If patients are to provide true informed consent for palliativ

also be assured of continued access to curative care. Medica

combined with prisoner wishes and values will determine th

of curative and palliative interventions. Palliative care shoul

curative care plans.

• Confidentiality.

Protecting an inmate’s medical confidentiality is difficult ev

medical records is restricted to medical staff. Correctional s

other inmates, who observe an inmate being taken for speci

taking certain medications, can figure out his or her diagnos

corrections officers may be involved in discussions with med

patient care for security reasons. Correctional staff should r

training in safeguarding medical information. In some instit

required to sign agreements regarding the protection of con

information.

• Medical advocacy and negotiation.

The clinician should be the advocate for the individual inma

and pursuing a palliative care plan. However, the plan must 

corrections staff, who may not be willing to support the plan

• Pain management.

Providing access to appropriate analgesic medication is perh

problematic area for clinicians providing palliative care with

• Advance directives.

The issue of advance directives is extremely delicate in pena

self-determination is by definition abridged. Care providers 

that a patient’s decisions are voluntary and uncoerced regar

withholding of life-sustaining treatment. Health care proxy a

setting up conflicts of authority in a correctional institution 

are family members or friends.

• Compassionate release.

Compassionate release is the release of a terminally ill inma

community so that she or he can die in an appropriate settin

ate care. Although the process of review for compassionate r

many institutions, it is often so time-consuming that most in

prison before release is approved. 9

Chpt 15 1-17-03.p65 1324
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

• Clustering.

Instituting hospice programs may provide the specific servic

inmates who are chronically and terminally ill, but it also cr

Clustering inmates requires that many of them be moved fro

in which they have been housed. This separates them from o

they may have formed close bonds. If a state has only one ho

patient/inmate may be taken to an institution very far from f

friends in his or her community, further isolating the patien

he or she most needs the support and comfort of loved ones.

• Discharge planning.

The boundary between correctional health care systems and 

systems that inmates re-enter upon discharge into the comm

Because it is impossible to make pre-release application for 

Medicaid, inmates experience a hiatus in medical coverage 

incarceration and their return to the community. Programs 

facilitate discharge planning for soon-to-be-released inmate

work is labor-intensive and linkages are difficult to establish

Standards of Care

HRSA has funded the development of standards of care for palliative 

tutions by the American Public Health Association (APHA), the Nationa

tional Health Care (NCCHC), and Guiding Responsive Action for Correction

Copies of the APHA standards are available from the APHA publication

APHA. The GRACE Project standards can be obtained by phone, (703) 3

www.graceprojects.org. The GRACE Project, part of the non-profit agen

also has other resources for end of life care for incarcerated or recently r

HIV/AIDS. These include a handbook for caregivers and managers, a bro

in prisons or jails, articles, and a videotape for training institutional staf

Clinical Pathway for the Recently Released Inmate

The transition from a correctional facility to the community often 

continuity of health care. A red flag should immediately go up when a p

released from jail or prison presents for care, with the following conce

• The person may have been discharged from the facility beca

in advanced disease.

• If the person has been prescribed antiretroviral medications

have only a few days’ supply or none at all.

• The person may have no one in the community for support a

no resources or place to stay.

Chpt 15 1-17-03.p65 1325
326 U.S. Department of Health and Human Services • Health Resources and Services Administ

Obtain a baseline assessment and lab work immediately.

• Connection with social services staff.

Arrange for the person to meet with a case manager or socia

this visit, and establish contact with an outreach worker. Ex

need to apply for a range of entitlements and services, espec

housing.

• Reconnection with family.

Identify at least one family member and begin the process o

• Continued personal contact.

Make a plan for how to maintain contact. Do not expect the 

two weeks for a follow-up visit; agree to have a next-day conv

Linking Recently Released People with Community Care

The U.S. Health Resources and Services Administration HIV/AIDS B

cial Projects of National Significance is collaborating with the Centers 

Prevention on an initiative to develop models to enhance prevention an

cerated people at risk for HIV or living with HIV.12 Two key component

that link inmates to community services are discharge planning wh

prison or jail, and case management either inside the institution or o

For HIV-positive prisoners in the San Francisco County Jails, for examp

arranges to have a case manager meet individuals at the gate when th

vides them with up to three months’ housing in a single-room occup

them with social and medical services in the community. This immedia

lent example of an intervention for the clinical pathway described ab

individuals in the early stages of HIV disease may benefit from such int

advanced HIV disease are in even more critical need of the continuity o

tions afford. Unfortunately, these models are not the norm at correctio

Chpt 15 1-17-03.p65 1326
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

1. Burr CK, Lewis SY. Making the Invisible Visible: Services for Families Living w

Their Affected Children. National Pediatric and Family HIV Resource Center, Ju

www.pedhivaids.org.

2. Song JY. HIV/AIDS and Homelessness: Recommendations for Clinical Practice 

TN: National Health Care for the Homeless Council, Inc., 2000. Available at ww

3. National Immigration Project. HIV and Immigrants: A Manual for AIDS Servi

San Francisco AIDS Foundation, 1997. Available at www.sfaf.org/policy/immigra

4. Maloy KA, Darnell J, Nolan L, Kenney KA, Cyprien S. Effects of the 1996 Welfare 

Laws on the Ability and Willingness of Immigrants to Access Medicaid and He

Washington DC: Center for Health Services Research and Policy, George Washin

Center, May 2000. Available at www.gwhealthpolicy.org.

5. Special Projects of National Significance Report on New 1999-2000 Initiatives: U

CARE Act Grantees. Rockville, MD: Health Resources and Services Administra

6. American Public Health Association Standards for Palliative Care, Pain and Sym

Washington DC: American Public Health Association (in press).

7. Estelle v Gamble, 429 U.S. 97.

8. Dubler NN. The collision of confinement and care: End-of-life care in prisons a

J Law Med Ethics 26:149-56, 1998.

9. Beck, JA. Compassionate release from New York State prisons: Why are so few 

J Law Med Ethics 27:216-33, 1999.

10. The GRACE Project. End-of-Life Care in Corrections: A Handbook for Caregive

Alexandria, VA: Volunteers of America, 2001. Available at www.graceprojects.or

11. The GRACE Project. Standards of Practice for End-of-Life Care in Correctional S

Volunteers of America, 2000. Available at www.graceprojects.org.

12. Special Projects of National Significance: 2002 Report on Thirteen Initiatives. R

HIV/AIDS Bureau, Health Resources and Services Administration, 2002.

Chpt 15 1-17-03.p65 1327
Chpt 15 1-17-03.p65 1

328
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

“Can it be in a world so full and busy that the loss of o

makes a void in any heart so wide and deep that not

width and depth of vast eternity can fill it up?”

C

■ Most of us answer “yes” to Dickens’ question. The experience of a de

one of profound sadness and loss. The multidimensional responses to 

grief process. This process is often complicated when the death is AID

one individual can be as devastating as Dickens’ question presuppo

people experience multiple significant deaths, as most bereaved in 

There are unique challenges and needs in the bereavement process for 

related deaths. This chapter will explore the nature and process of gr

tions for use by the palliative care team in helping the bereaved cope w

a changed life, and be open to personal growth and transformation.

THE LANGUAGE OF GRIEF

Grief is the normal, dynamic process that occurs in response to any t

encompasses physical, emotional, cognitive, spiritual, and social res

highly individualized, depending on the person’s perception of the lo

context and concurrent stressors.1

Mourning is often used interchangeably with grief, but mourning more 

public expression of grief. This public expression (perhaps crying or wa

ily relate to the significance of the loss; it is usually related to cultural 

encourages social support for the mourner.2

Bereavement is the state of having suffered a loss. This incorporates th

which the bereaved learns to live with the loss. The root of the word 

robbed of something valuable.2

Complicated mourning arises from an interrupted or obstructed gri

this term to refer to potentially harmful outcomes, from somatic discom

distress, and even the possibility of death, when grief is unaccommodat

that can lead to complicated mourning; many of these factors apply to 

Elizabeth A Keene Reder, MA

Chpt 16 1-17-03.p65 1329
330 U.S. Department of Health and Human Services • Health Resources and Services Administ

grieving after the death.4

 Rando delineates these responses from po

that the term anticipatory grief is misleading because “anticipatory

whereas in actuality people are dealing with past and present losses a

Anticipatory grief includes changing assumptions, adapting to role ch

for staying separate from, yet involved with, the patient, and experien

depression, and anxiety.6

 The patient and caregivers have the oppor

pending loss gradually over time. Often the people involved must ch

about the way the world works and what their future will hold. State

thought...” or questions like, “What will I do?”and “How will I liv

process.

Patients and caregivers also struggle with secondary losses: loss of 

ment, relationships, meaning, and the future. As the disease progresse

intensify. Facing these losses can be overwhelming for all involved.7

One benefit of this process is the opportunity for people to complete unfi

practical, emotional, or spiritual. The opportunity to get affairs in or

prepare for final arrangements, reconcile with loved ones, express gr

can be meaningful for the patient and the caregiver.6

If the illness is prolonged, the period of anticipatory grief may beco

caring for the person with AIDS may emotionally withdraw too soon 

lence about the length of the illness and caregiving responsibilities. Th

guilt during the illness and during bereavement.8

Another complicating factor is that often the caregivers are HIV positiv

their own physical health issues, the threat of personal loss and facin

very real.8

There have been conflicting studies as to whether the opportunity to 

impacts the bereavement process by lessening the length of bereaveme

of grief.9

 Worden notes that grief is multidimensional and it would be to

a time to prepare for the death of a loved one correlates positively w

ment period.8

However, the palliative care team should be aware of the process an

emerge during anticipatory grief because the responses may have an 

the emotional status of the person with AIDS.8

 Brown notes that suff

death over the entire illness trajectory.4

Chpt 16 1-17-03.p65 1330
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

,

aspects of coping with stress and grief)

• Enabling people to complete unfinished business

• Encouraging people to live fully and enjoy life whenever and 

can10

As people face their death, they want to know that they will be remem

had meaning. Engaging patients and caregivers in life review and m

interventions in coping with anticipatory grief.11 Zulli suggests religiou

of photography and/or videos, and journeys (one last trip to a favori

tools.12

FACTORS THAT AFFECT THE GRIEF PROCESS

■ Several factors affect the length and intensity of the grief process. T

the bereaved move through the grief process. For those dealing with AI

of the factors experienced indicate significant risks and often comp

leading to potentially dangerous health outcomes.

The Nature of the Relationship between the Deceased an

This is a crucial factor during the grief process. Generally the great

deceased and the bereaved, the greater the grief experienced. The typ

partner, sibling) does not necessarily indicate the intensity of grief; eve

However, the death of a child is usually always considered a high risk for 

If there was an ambivalent or codependent relationship, this can also 

cess, as the bereaved may face intensified emotional responses.8

For those dealing with AIDS-related deaths, another complicating fac

tionship may be disenfranchised, or not socially recognized as a valid 

grieve.13 These disenfranchised relationships can include the death of 

friend or co-worker. Additionally, young children, the elderly, and the d

are often considered unable to comprehend the loss, therefore unable 

able to create a bond is able to grieve when that bond is threatened or 

Often these disenfranchised grievers need additional support due to 

enced during their loss and yet are denied even general sympathy fro

cluded from the postdeath rituals, denying them an opportunity to sa

one and limiting the social support at a crucial time.8

The Manner of Death

The perception of preventability of the death is a crucial factor that 

process. For those grieving deaths from early in the AIDS pandemic, th

did not live long enough to benefit from new treatments is difficult to r

Chpt 16 1-17-03.p65 1331
332 U.S. Department of Health and Human Services • Health Resources and Services Administ

death from AIDS is now met with disbelief rather than as an anticipa

longed illness often means the entire family structure is changed in ord

People may have to rearrange work schedules or not work at all; they m

caregivers and/or financial support. These stressors on the family sys

the grief process.2

 As treatment advances, health care professionals m

patory grief and bereavement period are affected by closer bonds that h

of patients who are living longer.7

Symptoms and side effects of the disease may also affect the grief proc

symptoms that correlate positively with complicated grief: disfigurem

tation.11 The challenge of coping with these symptoms can create amb

detachment from the patient. People with AIDS are at risk for both sy

Unfortunately, an AIDS-related death is still a disenfranchised death 

with deaths from homicide, suicide, and drugs). Patients sometimes c

ily members or friends of their diagnosis and AIDS is often not ment

funerals. The social stigma associated with AIDS-related deaths can 

responses.14

The time of death experience is an individualized factor. Some may ex

if they were not able to be present at time of death; some may exper

depending on their perception of the dying experience.

Social Variables

A key indicator in how the bereaved will cope is the availability a

system. The support system may include family, friends, coworkers, n

munities, pets, and professional support. Many families come to re

health care team during the patient’s illness; in fact, due to the disen

death, other typical sources of support may be lacking. Once the patien

care team is no longer regularly involved, the family is coping with not 

one, but the loss of their main support as well. Reinforcing or feeding 

bereaved at the lack of family and community support only further dis

tial sources of future support. Rather, encourage and strengthen conne

and the community.

Cultural and religious beliefs and practices may provide comfort for th

intensify grief responses. Regardless of cultural and ethnic backgro

plays a significant role in how the beliefs inform the bereaved’s copin

Culture and Care.) Familiarity with the beliefs and practices of othe

groups will provide a general framework for the palliative care team.15 Cu

be considered before judging a person’s grief style as “abnormal” or “p

typing grief responses of an individual based on a cultural group can 

sive.16 It is best to ask the individual person how their beliefs and pra

grief process.

Chpt 16 1-17-03.p65 1332
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Doka and Zucker are exploring different styles of grief and define a con

from highly intuitive (process, feeling-oriented) to highly instrumental 

Identifying styles on the grief continuum will have implications for gri

a highly instrumental griever who is focused on cognitive responses a

plishing tasks may not find a bereavement support group that encour

ings particularly helpful.17

Some communities are coping with a disproportionate number of AIDS

lead to bereavement overload, when the bereaved experience a series 

unaccommodated grief that may lead to unhealthy physical, emotional, 

In addition to experiencing the deaths of many loved ones and friend

experience other losses. These losses may include loss of their commu

purpose, loss of privacy, loss of role in society. Coping with bereaveme

losses increases the risk of a complicated grief process.2

Other stressors that can complicate the grief process are mental health 

issues and problems with physical health. If the bereaved survivor is a

she may be experiencing normal physical grief reactions that can mir

example, a typical physical grief response is weight loss, yet a sympto

common cognitive response to grief is the inability to concentrate and 

symptom of dementia.19 It would be important to refer the bereaved 

evaluation in these circumstances.

Substance abuse issues can complicate the grief process in several way

ence guilt related to participating in activities that increase the risk 

Corless notes that, “In the gay community, bereavement tends to occu

same generation. In communities where injecting drug use is high, m

erations of a family are dying of the same disease.” 20 Unfortunately, ma

when parents, and even other siblings, die from AIDS. In other situati

are used as coping mechanisms during bereavement and this often le

because these methods of coping mask the actual grief responses and 

ties for the bereaved to deal fully with their grief issues.

Again, it is important to note that grief itself is not pathological but the 

interfere with, or complicate, the grief process. Various terms that h

structed grief: “morbid, atypical, pathological, neurotic, unresolved

abnormal, deviant, or dysfunctional.” 2

 The inconsistency of terms m

ing and treating grief that has been complicated.2

 (See Chapter 10: Ps

Chpt 16 1-17-03.p65 1333
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Recent grief theorists have built on Bowlby’s work (see Table 16-1)

among each theory, but most include an initial phase of shock or numb

zation and a process of reorganization.

These traditional models have been challenged in recent years. One is

to describe the grief process; this term implies a passive reaction to lo

moving through grief is an active process.5

 Some believe that traditiona

on emotional responses to loss and de-emphasize cognitive responses

that in these models the aim of the grief process is for resolution, or a 

state of being. Rando encourages the term accommodation rather than 

completion.

2

 Accommodation implies an active process of adapting to f

rather than a linear process with a final endpoint. Recent models o

grief as a dynamic process around which certain themes can be dis

growth and transformation emerge as possible outcomes.23

Traditional bereavement models usually describe grief that results f

related grief experiences of multiple loss and bereavement overload 

works.1

The work of William Worden is used to illustrate the grief process in th

mourning” are a way to understand the grief process more fully.8

 T

intentionally to emphasize that dealing with the responses to grief t

work.” Worden acknowledges that the tasks do not have to follow a 

people can work on more than one task at a time.

TASK I:

ACCEPT THE REALITY OF THE LOSS

The first task of grieving is to acknowledge and accept the reality th

will not return. This task can take time, as the bereaved often exper

ness, shock and disbelief even if the death was expected.

8 The bereav

riod of searching or yearning for their loved one. Some people report 

loved one when they arrive at home, or attempt to contact them by calli

telephone before remembering that the person is gone. Many people 

ing their old routine, such as setting the table for two people even th

has died. The bereaved may even refer to their deceased loved one in 

the present and past tense together in the same conversation. These 

ing to accomplish the first task: accepting the reality of the loss.

Traditional rituals such as funerals or memorial services can help peo

This public method of saying good-bye helps people confront the finalit

first visit to the cemetery reinforces the finality of the loss as well.

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Table 16-1: Contemporary Theories of the Grieving Process Bowlby (1961): Phases of Grief Numbing Searching/yearning Disorganization/despair Reorganization/new life Parkes (1974): Phases of Grief Disbelief Searching/yearning Isolation/loneliness Mitigation Reinvestment/new identity Worden (1982): Tasks of Grief Accept the reality of the loss Experience the pain of grief Adjust to life without the deceased Withdraw emotional energy and reinvest in life Rando (1983): Grief Processes Recognize the loss React to the separation Recollect/re-experience the deceased Relinquish old attachments Readjustment Reinvestment Sander

Phase

S

Awarene

With

He

Re

Sources: References 6, 8, and 35.

Chpt 16 1-17-03.p65 1335
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EXPERIENCE THE PAIN OF GRIEF

The second task of mourning is for the bereaved to allow the pain of g

expression. The pain of grief includes physical, emotional, behavioral

social responses to the loss (see Table 16-2). This task is crucial becaus

or does not, acknowledge the pain of grief in some way, these respons

selves in unhealthy ways.8

Coping with the pain of grief will be unique to every individual. Thes

themes that occur during bereavement; not every person will experien

People do experience actual physical responses to a loss. Although 

physical health of the bereaved is at risk after a loss, many of the sym

cians during bereavement are normal, expected responses to grief, not 

lead to inappropriate use of health care services.25

As noted earlier, in AIDS-related deaths, often the survivors may be HIV 

both normal physical responses to loss, as well as symptoms of AIDS19 

evaluation is warranted.

Emotionally, people tend to experience a wide range of feelings. The 

ness usually subside after a few weeks or months and thoughts and feel

along begin to surface. Many bereaved report significant emotional r

the loss as the reality is fully absorbed:“I thought everything was fine 

are worse.” While some people need to express their feelings and talk a

others do not experience grief emotionally as their primary response a

to process their feelings. Some may even experience dissonance if pa

enced but are unable to be expressed: “I may appear normal on the o

I’m screaming.” 11

Sleep disturbances and appetite changes are the most common beha

ioral responses may vary due to cultural and gender factors,8

 but most c

an acceptable response to death.16 The bereaved should be wary of th

alcohol, tobacco, and tranquilizers.25

Recent grief theories are emphasizing the cognitive responses to loss

mary way some people experience grief (the “instrumental griever” 17)

report a fear of “going crazy;” education and normalization of the grief p

this fear.

Spiritual responses to loss are also highly individual. Even those who 

religious belief system may not be comforted by their beliefs. One of t

spiritual response to loss is the ability to make meaning from the expe

An aspect of grief that is often ignored is the social response to loss. 

people may be coping with social isolation due to stigmatization.1

 Nei

portance of the social unit in his work on using constructivism to facil

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Table 16-2: Common Reactions to Grief Physical • Dizziness • Breathlessness • Hollowness in the stomach • Tightness in the throat/chest • Dry mouth • Changes in energy level • Loss of sexual desire Emotional • Numbness • Yearning • Sadness • Anger • Guilt • Anxiety • Loneliness • Relief Behavioral • Indecisiveness • Sleep disturbance • Changes in appetite • Absent-minded • Social withdrawal • Crying • Sighing • Searching • Increased use of alcohol, tobacco or tranquilizers Cognitive • Disbelief • Confusion • Sense of “going crazy” • Preoccupation with the deceased • Sense of presence Spiritual • Search for meaning • Loss of faith • Comfort from faith • Changes in relation- ship with God • Alienation 

• Passi• Hype• With• Unpr

swin

Chpt 16 1-17-03.p65 1337
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after several months of dealing with the loss. It may include adjustin

single parent, getting a job, learning to manage finances, or taking o

those dealing with HIV, it can also mean needing to find other caregiv

Some bereavement support groups use the image of Janus, the Roma

returns, beginnings and endings, as a symbol for their group. This two-f

forward and backward, is an appropriate symbol for this task as the 

looking back to acknowledge what has been lost and beginning to lo

possible in their lives.

Part of adjusting to the loss is facing all the significant “firsts” that 

bereavement. Coping with the first holiday, birthday, or anniversary w

trigger a temporary upsurge of grief.2

 Grief responses can be trigger

such as holidays or anniversaries, linear precipitants that are one-tim

experiences or age (i.e., not being present at an important function), an

tants, including reminder-inspired reactions (“we always used to...”) 

tions.2

 An upsurge of grief may include a return of physical symptom

sponses, changes in social behavior, and spiritual distress. These tem

distinguished from complicated grief, and should not be misdiagnosed a

TASK IV:

REINVESTING ENERGY FROM THE DECEASED INTO 

The fourth task of mourning refers to the ability to transfer the emo

the relationship with the deceased into new, healthy approaches to l

that the deceased is now “forgotten” or that the bereaved has “obtain

task refers to the bereaved’s ability to establish a new connection wit

can transform their new life. Browning explains this concept as “sayin

out saying good-bye to the loved one.” 28

Reinvesting the emotional energy into new life may include a variety 

tures such as considering the deceased’s perspective in a difficult situ

with a picture of the deceased are examples of this reinvestment. Ot

outward in sociopolitical actions such as working for justice, fundraisin

for the deceased.

Signs that a person is learning to accommodate their grief include:

• A return to good health (or their health status before the dea

• Acknowledgment of the reality of the loss

• Redefined identity

• Emergence of new skills or roles

Chpt 16 1-17-03.p65 1338
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Those who grieve the death of a loved one never truly get over” the 

accomplish the tasks of grieving, the pain of the loss is still present 

tense and more manageable.

UNIQUE ASPECTS FOR CHILDREN

■ As noted earlier, children are often disenfranchised grievers beca

“too young” to understand what has happened. This is compounded w

related deaths, another type of disenfranchised grief. The age, intellec

opmental stages, and circumstances of the loss will all affect the chil

notes that initially children often experience shock and disbelief, then 

ologic responses to adults: fatigue, changes in sleep patterns, appet

tightness in the throat.29 They also tend to experience a wide variety o

responses. One unique aspect of children’s grief is regressive behav

nurse, sleep with a parent, use baby talk, suck their thumb even though 

such behavior for a while). Wolfelt attributes this to a desire to return 

the child felt protected and secure.29 He also describes the phenomen

their grief “in bits and pieces”—crying or calling out for the loved on

play within minutes. This coping mechanism works well for the child b

family to understand.

Often children will “act out” in an attempt to get attention. Even if a ch

hend the loss, she can respond to the changes in the emotional status 

Developmentally, children must come to understand that death is fina

unpredictable, and universal. They must also perceive the concept of n

with causality.29 Table 16-3 illustrates children’s developmental stage

suggested interventions.

Children dealing with AIDS-related deaths may be coping with the dea

bers or have HIV themselves. They are at risk for complicated grief 

disenfranchised nature of their grief experience. (See Chapter 12: T

Adolescents.)

SUPPORT FOR THE BEREAVED

■ The palliative care team can provide support to the bereaved by 

sharing memories of the deceased, normalizing grief responses, and enco

To do so, the palliative care team should be familiar with the dynamic

be able to identify healthy and unhealthy coping behaviors.

Immediately after the death, it is important to reach out to the bereave

and give permission to grieve. In AIDS-related deaths there may be con

cal and chosen families. The palliative care team should appreciate 

families, without taking sides or judging their actions.2

Chpt 16 1-17-03.p65 1339
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Table 16-3: Children’s Developmental Stages of Grief Age 0–3 years 3–5 years 6–9 years Thoughts • Loved one will return • Loved one is just away • Wonder if loved one can return • Deceased can still function • Their actions or words caused death Feelings • Confused • Anxious • Fearful of separation • Sad or angry • Confused • Anxious • Fearful of separation • Sad or angry 

Actions • Cry • Exhibit clinging behavior • Exhibit regressive behavior • Cry • Temper tantrum • Nightmares • Exhibit regressive behavior • Exhibit clinging behavior • Cry • Temper tantrum • Nightmares • Exhibit regressive behavior 

Interventions • Hold the child • Offer words of reassuranc

in a calm tone of voice • Provide extra attention • Offer reassurance calmly, about the “right words” • Provide extra attention • Tell the truth; give only apinformation • Reassure the child they w

ibl

f

th

d

th 

Chpt 16 1-17-03.p65 1340
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• Provide extra attention • Tell the truth; give only a

information • Reassure the child they wresponsible for the death • Encourage physical or artexpression of grief • Maintain structure, limit

• Seek community and sch• Maintain structure, limit• Encourage physical or art

expression of grief • Exhibit aggressive or impulsive behavior • Engage in risky or dangerous behavior • Decline in grades • Difficulty concentrating • Exhibit aggressive or impulsive behavior • Engage in risky or dangerous behavior • Decline in grades • Difficulty concentrating • Sad • Confused • Anxious • Withdrawn • Lonely • Guilty • Sad • Confused • Anxious • Withdrawn • Lonely • Guilty • Understand finality and irreversibility of death • Their actions or words caused the death • Understand finality, irreversibil- ity, nonfunctionality of death • Their actions or words caused the death 9–12 years 12–18 years Table 16-3: Children’s Developmental Stages of Grief (continued) Age Thoughts Feelings Actions Interventions

Chpt 16 1-17-03.p65 1341
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do find it helpful to meet with the physician or members of the health c

of a loved one to review the course of treatment or ask questions abo

bereaved need reassurance and affirmation that they did everything po

one and they did not hasten the death of their loved one (perhaps by 

dose” of medicine or providing inadequate care). Malacrida reporte

satisfied with the information provided about the cause of their loved 

that the communication and information provided to the bereaved by 

may also influence their bereavement recovery.31

Some people may not need, or want, further contact with the palliativ

painful reminder of the illness and death, especially if they have not a

loss. Take cues from the bereaved before assuming they wish to rema

Educating about the grief process and normalizing appropriate grief re

of the stress and anxiety experienced by the bereaved as they face 

mourning—experiencing the pain of grief. Often the image used to des

that of a “roller coaster ride.” This image highlights that those mov

necessarily feel better and stronger each day but experience “ups and 

turns” that are normal for the ride. The bereaved need to learn wh

tional, spiritual, cognitive, and social responses they can expect, but a

ence and express their own process.

• Reassure them that it is normal to experience upsurges of gr

significant days or events such as birthdays, anniversaries, a

well as some upsurges that will occur at random.

• Educate them that anticipation of the significant day is usua

day itself.

• Encourage them to divert the energy from worrying about th

into making plans for how to spend the day.

• Remind them that the grief journey takes as long as it takes

frame for grief.

Tables 16-4a and 16-4b suggest techniques for supporting the bereaved 

Good self-care is a significant part of learning to adjust to the loss (Wo

the bereaved the grief affects their entire person: physically, emotiona

tually. Encourage physical exercise (as appropriate), proper diet, and p

spiritual responses to their losses and accompany them as they search 

they are not looking for external answers; they need to find their own 

live with the questions. Help them develop the creative aspect of the

them to keep journals or incorporate art and music techniques as part 

grief.32 Strengthen their support systems and be aware of the commun

Nord notes that “social support, community involvement, and fosterin

useful” in learning to accommodate a loss.33

Chpt 16 1-17-03.p65 1342
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how the bereaved feel.

People do not “get ove

learn to manage it and 

Many bereaved equate 

forgetting their loved o

Though meant as reass

perceived by the berea

“shut down” their grief

This can offend nonrel

religious people may n

Avoid clichés.

The idea of replacing t

to the bereaved.

This puts the effort on 

people experience dec

bereavement, they are 

The length of time a pe

to the bereaved; their 

that loved one.

“You’ll get over this in time.”

“Don’t cry.”

“It was God’s will.” Or “God knows best.”

“You can have another child.” Or “You’ll find

someone else.”

“If you need anything, call me.”

“You should be glad s/he didn’t suffer more.”

At various points along the grief journey, it may be appropriate to encou

Hart states that rituals can provide therapeutic expressions that symb

ity, and healing.34 Therapeutic bereavement rituals are usually rituals 

ity.2

 Rituals of transition may relate to the separation of the loss or the 

life without the loved one. These symbolic actions may include writin

and then perhaps burning them, taking off a ring or melting it into anot

putting away photographs of the deceased. Transition rituals may be 

Worden’s Tasks I and II. Rituals of continuity may be related to the t

with the deceased as a new type of connection is established.2

 These 

to the grave, mentioning the deceased’s name during a prayer, or creat

quilt, and may be most effective during Tasks III and IV.

The elements of a ritual include the people involved, the symbols to b

and the characteristics of the ritual. The ritual, like the grief process, 

and must be created for the individual. It will arise from the circumstan

the beliefs of the bereaved.2

(See next page for Table 16-4b.)

Chpt 16 1-17-03.p65 1343
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Acknowledges the pain 

experiencing and affir

Gives permission for ex

offers reassurance of s

Bereaved often fear th

loved one. It does not 

the name of the decea

happened.

Validates the importan

loved one. Offers reas

will not be forgotten.

Allows for individualiz

Encourages the bereav

Normalizes grief respo

individualized respons

“I don’t know how you feel but I do care about

you.” “I’m sorry that you are hurting.” “I can’t

imagine what you are going through right now.”

“Go ahead and cry. It’s okay. I’m here for you.”

Refer to the deceased by name.

Share specific stories that you remember about

the deceased.

Use open-ended questions: “How has losing

your partner to AIDS affected you?”

Use superlative phrases in questions:

 “What has been the worst part for you?”

 “What has been most helpful?”

Use third-person statements to initiate

the conversation:

“Some people tell me that coping with

loneliness is the most difficult thing for

them. What has it been like for you?”

or

“Many people tell me they find it difficult

to concentrate. What has your experience

been?”

Sources: References 1, 24, and 35.

It is possible to experience personal growth and positive transformati

cess. Trends indicate that people who are able to create meaning in t

connectedness with life, and are flexible in coping with change are lik

formed by their grief.26 Neimeyer builds his grief model on construct

mans need to find meaning and organize their lives around basic assum

can be a time to explore this more deeply.27

The health care team can help facilitate this process, recognizing tha

develops as people move through the grief process and should not be ex

grief response. Three questions can be raised to help the bereaved wo

process: 35

• What do you want to bring from your old life into your new li

Chpt 16 1-17-03.p65 1344
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• Giving the bereaved permission to grieve in ways that work 

• Normalizing responses to grief

• Educating about the grief process and what to expect, espec

first year

• Encouraging good self-care

• Referring for appropriate medical evaluation

• Encouraging use of creative techniques such as keeping a jou

• Encouraging use of ritual

• Exploring spiritual responses, especially the search for mean

• Strengthening and encouraging use of a support system

• Affirming efforts to re-engage in life

• Helping the bereaved recognize opportunities for personal g

transformation

In reaching out to the bereaved, the palliative care team may experi

grief and loss. This is a normal response; the important thing is to confro

so that one can be fully present to the bereaved in their time of need. 

cry with, or in front of, the bereaved as long as they do not have to 

palliative care team. Health care professionals have a responsibility t

work in order to be present to others who are grieving. Good self-c

healthy, appropriate coping mechanisms are essential. (See Chapter 20

It is also important for the palliative care team to maintain a therapeu

ing out to the bereaved. Remember:

• No one can take away the pain of grief.

• Don’t let a sense of helplessness prevent outreach to the ber

• Recognize the value of “being present” to the bereaved.

• Develop empathetic listening skills.2

In dealing with AIDS-related deaths, there are further challenges for 

Mallinson notes that in addition to addressing grief issues, health car

address the concurrent stressors: substance abuse, mental health i

homophobia, racism, and stigmatization, and advocate for accessible 

resources.1

CONCLUSION

■ Palliative care is a holistic approach to medicine that does not en

tient. Caring for the bereaved is a responsibility and a privilege. In A

bereaved face significant issues that can complicate their grief proc

incorporate a holistic approach to grief and loss can facilitate the ber

bly improving the bereaved person’s ability to function, reducing some 

and providing an opportunity for transformation.1

Chpt 16 1-17-03.p65 1345
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1. Mallinson RK. Grief work of HIV-positive persons and their survivors. Nurs Clin 

2. Rando T. Treatment of Complicated Mourning. Champaign, IL: Research Pres

3. Lindemann E. Symptomatology and management of acute grief. Am J Psychiatr

4. Brown MA, Powell-Cope G. Themes of loss and dying in caring for a family memb

Res Nurs Health 16:179-91, 1993.

5. Rando T. Living and learning the reality of one’s dying: traumatic stress and cog

anticipatory grief. In Doka KJ, ed. Living With Grief: When Illness Is Prolonge

Taylor and Francis, 33-50, 1997.

6. Rando T. Grief, Dying and Death: Clinical Interventions for Caregivers. Cham

Research Press Company, 1984.

7. Demmer C. Dealing with AIDS-related loss and grief in a time of treatment adva

Am J Hosp Palliative Care 18:35-41, 2001.

8. Worden JW. Grief Counseling and Grief Therapy: A Handbook for the Mental H

New York: Springer Publishing Company, 1991.

9. Hogan NS, Greenfield DB, Schmidt LA. Development and validation of the Hoga

Death Studies 25:1-32, 2001.

10. Rando T, ed. Loss and Anticipatory Grief. Lexington, MA: Lexington Books, 19

11. Doka KJ. When illness is prolonged: implications for grief. In Doka KJ, ed. Liv

When Illness Is Prolonged. Bristol, PA: Taylor and Francis, 5-15, 1997.

12. Zulli AP, Weeks OD. Healing rituals: pathways to wholeness during prolonged il

In Doka KJ, ed. Living With Grief: When Illness Is Prolonged. Bristol, PA: Tay

177-92, 1997.

13. Doka KJ. Disenfranchised Grief: Recognizing Hidden Sorrows. Lexington, MA

14. Mallinson RK. Addressing AIDS-related grief and multiple losses. The Hopkins 

15. Barrett RK, Heller KS. Death and dying in the black experience: an interview w

Innovations in End-of-Life Care 3: 2001, www.edc.org/lastacts.

16. Dowd SB, Poole VL, Davidhizar R, Giger JN. Death, dying and grief in a transcul

of the Giger and Davidhizar assessment model. Hosp J 13:33-47, 1998.

17. Doka KJ, Zucker R. Understanding the instrumental griever: an interview with K

Healing Newsletter. Summer 2000.

18. Kastenbaum R. Death and bereavement in later life. In Kutscher AH, ed. Death 

Springfield, IL: Charles C Thomas, 1969.

19. Bigelow G, Hollinger J. Grief and AIDS: surviving catastrophic multiple loss. Ho

20. Corless IB. Modulated mourning: the grief and mourning of those affected by H

Living With Grief: When Illness Is Prolonged. Bristol, PA: Taylor and Francis, 1

21. Bowlby J. Attachment and Loss: Attachment. Vol. I. New York: Basic, 1969.

22. Worman, B, Silver RC. The myths of coping with loss. J Consult Clin Psychol. 5

23. Neimeyer RA. Lessons of Loss: A Guide to Coping. New York: McGraw-Hill, 19

24. Stroebe MS, Hansson RO, Stroebe W, Schut H. Introduction: concepts and issue

on bereavement. In: Stroebe MS, Hansson O, Stroebe W, Schut H, eds. Handbo

Consequences, Coping and Care. Washington, DC: American Psychological Ass

Chpt 16 1-17-03.p65 1346
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28. Browning D. Saying goodbye, saying hello: a grief sojourn. Innovations in End-

www.edc.org/lastacts.

29. Wolfelt A. Helping Children Cope with Grief. Muncie, Ind: Accelerated Develo

30. Malacrida R, Bettelini CM, Degrate A, et al. Reasons for dissatisfaction: a surve

intensive care patients who died. Crit Care Med 26: 1187-93, 1998.

31. Main J. Improving management of bereavement in general practice based on a s

subjects in a single general practice. Br J Gen Pract 50: 863-6, 2000.

32. Showalter SE. Walking with grief: the trail of tears in a world of AIDS. Am J Ho

14: 68-74, 1997.

33. Nord D. Issues and implications in the counseling of survivors of multiple AIDS-

Death Studies 20:389-413, 1996.

34. Van de Hart O. Rituals in Psychotherapy: Transitions and Continuity. New Yo

35. Sanders C. Grief: The Mourning After. New York: Wiley, 1989.

36. Felber M. What to say to someone who is grieving. Health A-Z Web Site. www.hea

Accessed September 25, 2001.

Chpt 16 1-17-03.p65 1347
Chpt 16 1-17-03.p65 1

348
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

This chapter presents some of the important ethical issues that aris

and will pay particular attention to how these issues bear on the trea

with AIDS. This chapter is not intended to be either comprehensive 

however, provide a systematic approach to the ethics of palliative me

the ethical principles appropriate for this field in the theoretical idea

It will show how these ideals and principles can be applied to resolve 

patients living with HIV/AIDS.

THEORETICAL IDEALS

■ Like other fields of medicine, palliative medicine is informed by 

guide clinical decisions. Two of these ideals are discussed in this secti

patient dignity and the ideal of promoting patient well-being. Clarity re

is essential in properly framing and addressing some of the most troub

in the palliative care context.

The ideal of honoring patient dignity is sometimes identified with the ne

autonomy. Patients in need of palliative care, like other patients, have 

treatment they would like to receive. The need to respect these desi

clinical duties, some negative and some positive. Negative duties inclu

unwanted treatment on the patient. For example, if a competent patie

therapy, physicians must not administer it, even if they believe that it 

patient alive. Positive duties include the duty to assist patients in 

formed about the treatment options open to them. It also includes the 

thinking about the medical treatment they would like to receive shou

tated. This is normally accomplished by encouraging the patient to fill 

or to appoint a surrogate decisionmaker. (See Chapter 18: Legal and 

respect to patients living with HIV/AIDS, obtaining an advance direc

challenges. Fear of social and family stigmatization can make these pat

in end-of-life planning with their physicians. For example, some patie

their diagnosis a secret from their family members. Physicians must be 

They should discuss these concerns of stigmatization with their patien

process. They should encourage their patients to consider appointin

proxy and to inform the health care proxy of their underlying HIV/AI

page 358).

Respecting patient autonomy is an important part of honoring patien

only part. Clinicians should not simply defer to the autonomous desire

ever these desires may be. This is obvious in cases where patients as

tiate interventions that are clearly medically inappropriate. If a patie

cian to administer treatment that the physician believes would set back 

Lynn A Jansen, RN, PhD, Barbara E Johnston, MD and Daniel P Sulm

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the physician not to comply with his or her patient’s requests.3

This point is easily misunderstood. It is often said, for example, tha

inviolable. Regardless of one’s religious views, these expressions refe

beings as beings that command respect. Physicians, as well as others

ately to this value. Consider, for example, the case of a patient living wi

to participate in an experimental study with no known benefit and wit

cian might reasonably refuse to enter the patient into the study, even if 

enrolled, because the physician believes that to do so would be to fa

dignity. Of course, it will require ethical judgment to decide how, and 

defer to the desires of his or her patients. The point here is that honor

exhausted by the need to respect patient autonomy.

The second theoretical ideal of palliative medicine is to promote the 

the end of life. Patient well-being is promoted by advancing the patie

are these interests? It is useful to divide patient interests into two bro

1) phenomenological interests (those that directly relate to the actu

tient) and 2) nonphenomenological interests (those that do not solely 

rience of the patient). The first category refers to the interests tha

comfortable. A primary objective of palliative medicine is to provid

suffering that often are present at the end of life. Although in large me

are personal and subjective, good palliative care attempts to identify a

to take just one example, patients in need of pain relief are asked to ran

0 to 10. Doing so provides guidance to clinicians who seek to restore th

To further the phenomenological interests of their patients at the end 

providers must respond appropriately to pain. They must also, howev

The terms pain and suffering are related but are not synonymous. 

definition, pain is an unpleasant sensory and emotional experience a

potential tissue damage.4

 By contrast, suffering is a broader condition—

but is not limited to it. An important dimension of suffering concerns t

cal consequences that result from the perceived sense of damage to one

patients often suffer as a result of reflecting on their condition. Illnes

pain and deterioration in a patient’s physical condition. The patient m

consequences of this for his or her life and sense of who they are. T

further suffering.

ASSESSING PAIN

■ Pain is reasonably well understood. As several writers in this volum

(see Chapter 2: Overview of Clinical Issues and Chapter 4: Pain), ther

for clinicians to assess pain and standard interventions for relieving it

matter. It is an ill-defined, controversial, and poorly understood exper

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return to it when we discuss the practice of terminal sedation, below.

Much of palliative medicine is focused on the phenomenological intere

of life. But the nonphenomenological interests of these patients shou

are interests that are not well characterized in terms of maintaining 

patient’s interest in having his privacy respected or in remaining alert e

controlled are examples of such nonphenomenological interests. The

cause recent studies suggest that it is easy for clinicians to overlook th

ests seriously often requires clinicians to engage in active deliberation 

their treatment options.

The two theoretical ideals of palliative medicine that have been discus

ing the dignity of the patient and the ideal of promoting the patient’

times come into conflict. Not everything that furthers the interests o

with honoring him as a being worthy of respect. Determining how to 

these potential conflicts forms an important part of the ethics of palli

MEDIATING PRINCIPLES

■ The theoretical ideals of palliative medicine guide clinicians 

interventions and treatment options are appropriate for their patients

ideals cannot resolve the ethical problems that arise in the palliative care 

require recourse to ethical or mediating principles. The term mediat

intercede between the theoretical ideals discussed above and the c

encounter.

There are several important ethical principles that are relevant to t

medicine. This chapter will discuss three of them: 1) the Principle of 

of Double Effect, and 3) the Principle of Proportionality. Each of th

discussed in the medical ethics literature. 9–15 However, they have not b

cally in the context of palliative medicine and in the treatment of patie

Before discussing these principles a few words of caution are in orde

ciples that we shall discuss are not the only ethical principles relevan

Given the space constraints of this chapter, we cannot present an exhau

principles. However, the three principles that we will discuss are very 

standing of them should provide an understanding of how ethical prin

concrete cases in palliative medicine. Second, some of the principles t

in particular the rule of double effect—are controversial. We shall, 

reader when we advance claims that not all medical ethicists would 

provide references to alternative points of view.

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own understanding of his condition and the values that may o

its treatment. This dialogue should be critical and deliberative. 

on the recognition that patients often do not have fully formed v

often make mistakes in thinking about how their values transl

treatment decisions.

This principle relies on a particular model of shared decisionmaking. 

principle more fully, we must say a few words about shared decisionm

decisionmaking depicts medical decision making as a collaborative proce

of labor between physician and patient.8–11 In this process, the role of the 

her training, knowledge, and experience to provide facts to the patient a

sis and prognosis if alternative treatments (or the alternative of no tre

contrast, the patient’s role is to bring his or her values and preferences t

of these alternatives. In this way, shared decisionmaking enjoins patien

with their physicians in reaching decisions about treatment goals and o

Shared decisionmaking is particularly important in palliative medicin

mented that good patient care at the end of life closely correlates with 

cians to engage in discussions with their patients about prognosis an

directives, when to forgo specific treatment or diagnostic interventi

family support.1, 7 Applied to these specific areas, the model of shared 

clinicians honor the dignity of their patients and promote their well-b

This is true in two respects. First, in many areas of palliative medicine

of clinical discretion in decisions about which interventions are app

tients. For example, there is no uniform appropriate response a physici

patients regarding when to forgo medical interventions, how to best i

tive, or the most appropriate method for relieving end of life sufferin

search indicates that patients with AIDS have a wide variety of needs 

Accordingly, the correct or most appropriate response to these issues 

the physician has engaged in a process of careful questioning design

goals and expectations about the dying process. Indeed, with respect to 

of patient care will depend largely on the skill of the clinician in reach

the patient’s values and needs and coaxing them into clarity.1, 7, 16, 19

Second, the preparation and approach to death involves patients in a s

experiences. The health care provider, in contrast, will probably hav

dying patients and be much more familiar with the dying process than 

The fact that every patient dies only once and every death is a new 

special justification for shared decisionmaking between the clinician 

tive care context. Through shared decisionmaking the clinician can pr

by realistically describing to the patient what he or she can expect 

Although the clinician may not be able to predict with certainty when 

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is necessary to identify and correct these mistaken beliefs.

The extent to which shared decisionmaking serves the ideals of hono

promoting patient well-being turns, in part, on how the role of the phy

decisionmaking process. On this matter, there are competing unders

gue, for example, that physicians should provide their patients with a

then simply let the patients decide for themselves which course of tre

taken. Against this, we believe that physicians—at least physicians 

should adopt a more “deliberative” stance with their patients. This me

reflective and critical dialogue with their patients about how the pat

ences bear on the treatment options available to them. The point of s

to help patients come to reasoned decisions about the treatment optio

It is important to understand that the principle of deliberation does no

rect, modify, or change their patients’ values. Rather, it asks health care p

role in stimulating patients to deliberate about their values in a reasone

ner. The goal of this is to improve the understanding of both the physic

One objection to deliberative decisionmaking might be that it seems 

hence clinically inappropriate. For those who specialize in deliverin

care to patients living with HIV/AIDS, however, these demands need no

AIDS clinicians as a matter of course already establish long-term rel

tients living with HIV/AIDS, providing both the physician and patien

engage in effective deliberation about the future palliative care needs 

The fact that there is no uniquely correct treatment option for many si

further underscores the importance of deliberation in this context. D

and preferences of the patients, a regimen that is good for one patient 

another, even though both have the same underlying HIV/AIDS diagno

instances, to determine the correct regimen for a particular patient, t

engage the patient in deliberative decisionmaking.11 For these reas

exists for holding that the principle of deliberation should be a funda

guiding palliative care.

The Rule of Double Effect

Deliberative decisionmaking helps clinicians honor patient dignity a

being through a process of reasoned dialogue that identifies, clarifie

helps their patients to modify their preferences for care at the end o

itself, the principle of deliberation is insufficient for ethically appropri

the principle of deliberation enjoins clinicians to discuss their patie

spect to end-of-life care, it offers no guidance on the type of ends or 

permissibly advance. Nor does it speak to the issue of when it is per

refuse to comply with the desires of their patients that emerge in the 

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deliberative process.

One such principle that has special relevance in the palliative care set

effect. This rule has a long history in moral philosophy and in medical 

medicine, it is most frequently invoked by health care professionals to exp

between administering high-dose pain medication to a patient and eu

means to treating his suffering.12, 13, 23 According to the rule of double effec

between these two acts rests on the important distinction between a

unintended side effect of a clinical intervention. In the instance of adm

medication to relieve suffering, the intended effect is pain relief, and th

may be the hastening of death due to respiratory depression. By con

euthanasia, the intended effect is the death of the patient as a means to 

Despite widespread acceptance of this rule among members of the m

clinicians remain unsure of how to apply the distinction.23 Indeed, rese

certainty in this regard results in inadequate control of distressing pain 

ill patients.23, 24 Because the distinction between an intended act and a

is crucial to understanding the rule, it will be helpful to begin by cons

tion, one that is not controversial and one that is not related to medic

Consider the difference between the strategic bomber and the terro

gaged in a war and both drop bombs that result in the deaths of innocen

strategic bomber, unlike the terror bomber, does not intend to kill an

bombs a munitions factory, and although he is aware that doing so wi

killing innocent civilians, he does not intend to kill them. The terror bo

tionally kills the innocent civilians as a means of weakening the res

widely believed that the action of the terror bomber is morally worse t

bomber. The rule of double effect explains why this is the case.

In medicine, physicians rely on the distinction between an intended e

side effect all the time. For example, when a physician treats strept

penicillin, he or she foresees the possibility that the patient may devel

tion and die.13 It is clear, however, that the intent is not to kill the patien

of the patient in this kind of case would be an unintended side effect 

Not every medical ethicist believes that the principle of double effect i

practice as is stressed here.15 For example, it has been claimed that th

weakened because the intentions of clinicians are inherently ambiguou

case it is most often clear both to clinicians and to others what their in

it is not clear what their intentions are, morally reflective clinicians 

clarify them.

We have said that the rule of double effect rests on a distinction betwee

an unintended side effect of an action. Although it has been formulat

full statement of the rule reads as follows:

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The statement on the rule of double effect notes four conditions th

returning to the example of the physician prescribing penicillin for st

The physician is intending to bring about a good effect: the destructio

coccal pharyngitis. This action is not itself immoral. Indeed, it is an a

physician would undertake in these circumstances. It therefore sati

physician also does not intend the bad effect, although he may fores

realizes that there is some chance that the penicillin will kill the pa

this possible bad effect is no part of his intention to act. His action ther

(2) and (3) as well. The only remaining issue, then, is whether the phy

done for a proportionately grave reason. This means that if the inte

intervention is significant and if the foreseeable bad effect is eithe

unlikely to occur, then the intervention will count as one undertaken fo

reason. Because the possibility that a patient will die from penicillin is ve

intervention in this example satisfies condition (4).

The same analysis can be applied to distinguish aggressive pain mana

(see Case 2 on page 359 and Case 3 on page 361). Administering high-d

both a possible good and a possible bad effect. The possible good e

patient’s suffering. The possible bad effect is that the intervention 

death. If a physician were to administer the medication with the int

possible good effect, then his action would not be in itself immoral. It 

(1) and (2). If the patient’s suffering were sufficiently intense, and if 

appropriately managed by pharmacological interventions (see discuss

ciple of proportionality on page 356), then the physician’s intervention 

a proportionately grave reason and would therefore satisfy condition (

dition (3). Unlike euthanasia, aggressive pain management does no

possible good effect by means of the possible bad effect of the interven

pain management does not kill the patient as a means to relieving 

administers medication to relieve his suffering that may have the fores

effect of hastening his death.

 The rule of double effect is ethically important in care of the terminall

the previous section it was stressed that one of the theoretical ideals o

honor the dignity of the patient. We claimed that this means that patient

that commands respect. This status, in turn, grounds limits on how p

their illness or disease. The rule of double effect adds content to this requ

that physicians must never intend bad effects when treating their patie

intending to make one’s patients dead. This point has particular relev

terminal sedation and its implications for the proper treatment of pa

living with AIDS, at the end of life. When this rule of double effect is pro

can be made that make clear the difference between physician-assisted 

appropriate treatment of intractable pain (which risks hastening death

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it can and should be considered on its own terms. So understood, w

principle of proportionality.

This principle is very important to palliative medicine. A number of 

this principle in their explorations of when, and under what conditions

to relieve terminal suffering may justifiably override his or her obliga

According to Timothy Quill, Bernard Lo, and Dan Brock, for example, th

ality requires that the risk of causing harm bear a direct relationship 

diacy of the patient’s situation and expected benefit of the interventi

proposed the following formulation of the proportionality principle f

use of vigorous pharmacological measures in the palliative care settin

[T]he greater the patient’s suffering, the greater risk the phy

potentially contributing to the patient’s death, so long as the pa

and accepts the risk.25

This formulation of the principle, however, does not specify what typ

justifies a physician’s use of pharmacological interventions to treat suff

physicians to sum up the total amount or intensity of the suffering thei

ing. In this formulation all terminal suffering is on equal footing an

requirements of proportionality.

This principle of proportionality can be extended and refined by con

ideal of promoting patient well-being and distinguishing between dif

suffering and the different sorts of therapeutic interventions they may 

patient living with HIV/AIDS who is nearing the end of life may experie

from his terminal condition as well as suffering that results from his o

dition. Suppose, for example, that this patient blames himself for his il

great inner turmoil. The resulting psychosocial suffering may be as 

intense than, the pain and suffering caused by his underlying physiolo

be a mistake, however, simply to sum up his suffering as if it were a

suffering that this patient experiences—what we have referred to her

ing—is not appropriately managed by aggressive pharmacological 

thoughts are symptoms of major depression, the patient’s psychosocial 

aged by appropriate psychological or spiritual counseling.

This point is important for all patients in need of palliative care, but it h

applied to patients living with HIV/AIDS. Recent studies suggest that 

tients living with HIV/AIDS who desire euthanasia or assisted suicide 

than the need to avoid pain.6, 26 Depression, hopelessness, psychologica

by stigmatizing events related to their HIV status, and loss of communit

key factors contributing to the suffering of these patients.26 These for

are not appropriately managed by high-dose narcotics.14, 27 This stro

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A physicians therapeutic response to terminal suffering is j

foreseeably hastens the patient’s death, if and only if (1) the mea

properly correspond to the intensity of the patient’s suffering

implemented are appropriate for the type of suffering the patie

and (3) the patient understands and accepts the risks associated w

Clearly, the word “appropriate” in the second clause of this principle 

understood in light of the interest the patient may have in being res

condition permits) to a state of psychosocial well-being. As has been s

way in which this interest can be ignored is when physicians prescrib

treat psychosocial suffering. Such interventions are effective in the 

suffering, but they are inappropriate in that the restorative interests o

set back.

The requirement that the therapeutic measure be appropriate to the 

tient is experiencing calls for discrimination on the part of the physic

ing. In particular, it enjoins the physician to attempt to distinguish betw

ing that is caused by the underlying physiological condition of the p

forms of suffering.5, 14, 27, 28

Additionally this modified principle of proportionality requires physici

its of their medical authority. Physicians can fulfill their duty to reliev

ing by relying solely on pharmacological measures, but these measur

sponses to other forms of terminal suffering that are likely to be exper

with HIV/AIDS. With respect to psychosocial suffering, patients may n

as counseling or spiritual support.5, 14, 28, 29 Some physicians are skilled 

ventions, but many are not. For those who are not, they best fulfill their 

kind of terminal suffering by involving other members of the palliative 

the patient.

The modified principle of proportionality therefore differs significantl

lation of the principle of proportionality introduced at the beginning o

a more precise response to the specific types of ethical dilemmas surr

ing that clinicians are likely to encounter in the palliative care conte

mas surrounding the use of terminal sedation and other measures tha

cal interventions. Different types of suffering at the end of life may call 

interventions. Thus, to comply with this reformulated principle of pr

treating patients living with HIV/AIDS must develop skill in working as 

ciplinary team as well as in diagnosing, and appropriately attending 

suffering present at the end of life. The training clinicians should recei

cal skills is addressed in detail in other chapters of this guide.

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Case 1: AIDS, Patient Confidentiality, and Surrogate 

Mr. A is 62 years old, is HIV positive, and has hepatitis C cirrhosi

insufficiency. He has been on antiretroviral therapy since his di

has attended clinic appointments regularly and he has stated th

anyone in his family to know that he is HIV seropositive. End-of-l

not documented in the record of these visits and Mr. A did not ass

of attorney for health care nor did he write a living will. After be

hospital, Mr. A was eventually transferred to the intensive care 

diagnosis of acute respiratory failure and anoxic encephalopath

failed attempts at extubation, the medical team requested that 

throat (ENT) team evaluate the patient for tracheostomy. At 

meeting was held. In attendance were the patient’s wife and 

patient’s wife was the court-appointed surrogate decisionmake

consented to the tracheostomy. Given Mr. A’s previously express

HIV status confidential, the ICU physicians felt an obligation n

information to Mr. A’s wife. The ENT surgeons, however, objected 

give informed consent to the tracheostomy unless she were inform

HIV status. They believed that Mr. A had active AIDS, and was n

tive, and that his surrogate decisionmaker needed to know this

was called.30

The central ethical question raised by this case is how physicians can 

est in keeping his HIV status confidential when it conflicts with his sur

information about his condition. The patient’s interest in confident

nonphenomenological interest. Respecting this interest serves the p

remains true even when the patient has become incapacitated. The su

informed, however, is also an important right that serves both the pa

well-being. Finally, this case underscores the importance of the princip

palliative care of patients living with HIV/AIDS.

There is no clear consensus as to how this case should be resolved. Som

knowledge that Mr. A is HIV positive is reasonably thought to be relev

sions the surrogate decisionmaker must make, then this information 

surrogate.30 Physicians have an ethical, and in many states a legal, d

gates have complete and accurate information on which to base their d

not defeated by the patient’s interest in confidentiality. The patient’s in

while certainly important, is not absolute. It can be overridden for a n

example, health care providers are required to report certain sexually 

public health authorities to allow for contact tracing.12 Additionally, m

utes grant the surrogate the right to access the patient’s medical re

clude that if people with HIV/AIDS do not wish to have their condition 

Chpt 17 1-17-03.p65 1358
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to stigmatize those who have AIDS, the presumption in favor of patien

cially strong in this kind of case.34, 35

The intent of this case is not to resolve the ethical dilemma but to demo

decisionmaking could have prevented it. It is clear that physicians a

strategies to avoid this kind of situation. The principle of deliberati

approach. The fundamental mistake in Mr. A’s case was made prior to 

tated. His physician should have discussed with him early on the p

confidentiality. He should have helped Mr. A understand that if he bec

his surrogate decisionmaker would need to be fully informed about hi

mind, Mr. A and his physician could have discussed possible options fo

in not disclosing his HIV status. Empirical data suggest that virtually 

disclose their diagnosis to at least one nonphysician.36 It is very likely, t

person who knew about his HIV status that Mr. A could have ap

decisionmaker. Alternatively, Mr. A could have written an advance di

surrogate, but explicitly limited the surrogate’s right to have full infor

End-of-life decisionmaking is never easy for either the health care prov

is especially true for physicians caring for patients who are HIV pos

disease is becoming increasingly chronic in nature, physicians may be 

these discussions until late in the course of the patient’s illness.30 Moreo

to allow the health care surrogacy laws that many States have enacted 

tute for more deliberative discussions about durable powers of attorne

ever, given the importance of the interests involved, health care surro

stitute for deliberative discussion between physicians and patients. To 

illustrated by Mr. A’s case, physicians should adhere to the principle o

cally, they should take an active role in initiating discussions about adv

is the best strategy for respecting both the rights of patients and the d

Case 2: AIDS, End-of-Life Suffering, and Terminal S

Mr. B is a 38-year-old patient who was first identified as HIV positi

B’s condition has deteriorated over time and he has been admitt

contracting pneumonia. Although his pain can be managed, Mr. 

near death. He is not clinically anxious or depressed, and a con

asserts that he retains decisionmaking capacity. Mr. B fears w

impending loss of control over his life and becoming a burden 

repeatedly asks his physician to induce a barbiturate coma, and 

cial hydration or nutrition. After a prolonged consent discussion, h

to do so. Mr. B dies 14 days later.

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physician in this case administered terminal or palliative sedation.14, 

question for palliative care physicians who treat patients living with H

such a practice is justified and can be distinguished from physician-as

Some may hold that because he respects the desires of his patient, t

acted correctly. However, as we have argued above, to honor the digni

must do more than respect their autonomy. Recourse to the rule of d

can assist the physician in thinking about what is morally permitted in 

It might be held that in administering terminal sedation Mr. B’s phy

with the rule of double effect in that he did not intend to hasten M

wanted to relieve his terminal suffering. This is a misapplication of the 

is clear from the description of the case that even if the physician’s 

relieve Mr. B’s suffering, he intends to hasten his death as a means to th

however, the rule of double effect holds that one should never inte

intervention whether as an end itself or as a means to an end. This rem

B’s physician intends his death as a means for bringing about an impor

relief of suffering). If the rule of double effect is a valid rule, and the 

euthanasia, then this intervention, even though motivated by good will, i

It has been noted above that the rule of double effect is controversia

ethicists deny its validity. A further analysis of this case is therefore wa

morally significant features. This case also raises the principle of prop

From the description of the case, we know that Mr. B does not suffer fr

cal pain but from his fear of losing control of his life and becoming a b

kind of suffering is significant and can often be intense. The applic

principle of proportionality discussed (and rejected) above holds th

whether terminal sedation would be ethically appropriate for a pati

amount or intensity of his suffering should be quantified and weighed 

shortening his life. If we do this, it may then be reasonable to conclud

sufficiently grave to warrant terminal sedation.

However, a refined principle of proportionality—one that discriminate

of pain and suffering—would lead to a different conclusion. Mr. B expe

suffering. Some of these, such as the dyspnea that results from his A

are appropriately managed by opioids. Other kinds of suffering , howev

managed in this way. For example, the psychosocial suffering that resu

control of his life is best managed by psychological and spiritual cou

restore Mr. B to a state of psychosocial health.14, 27, 28

Restoration of psychosocial health is a central goal of palliative care r

illness. Patients confront many important issues in their approach to 

face death? Should they pray or not? How should they say goodbye 

members? Do they have outstanding concerns that have not been add

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vention to sedate Mr. B into oblivion.

Importantly, it does not follow from this that terminal sedation—or as 

the sedation of the imminently dying—is never justified.37 There are 

hastening the death of the patient plausibly can be considered a moral

of treating pain and suffering that is both unresponsive to standard p

propriately managed by other interventions.13 Many physicians, fearf

pating in euthanasia, have become reluctant to prescribe high-dose opi

rule of double effect and the principle of proportionality are importa

because they explain how physicians can conscientiously use potent dr

patients while maintaining a commitment to the value of human life.

Case 3: The Principle of Proportionality

and the Rule of Double Effect

Mr. C is a 30-year-old man with end-stage osteogenic sarcoma. 

possible after years of struggle with surgery, radiation, and chem

hands, he has required increasing doses of morphine for pain reli

now developed very bothersome myoclonus as a side effect of pr

opioids. He is bed-bound, dyspneic, and near death. Standard do

ants and benzodiazepines have not controlled the myoclonus an

pain treatments, his pain is increasing and responds only to increas

exacerbating his myoclonus. He is groggy, but alert. After a pro

cussion with him and his family about the risk of complete sedati

who herself has principled objections to physician-assisted suicid

nasia—prescribes increasing doses of benzodiazepines until the 

trolled. The dose required to do so precipitates a coma. Mr. C d

In this case the patient suffers from intractable pain that is caused by 

ological condition. His physician has attempted to manage his pain b

but these have all failed. Mr. C is not experiencing any significant psy

issue before his physician, then, is whether the need to respond to his 

and myoclonus might justify administering high doses of sedating medic

effect permits sedation in this case. Mr. C’s physician has a duty to trea

and the myoclonus that treatment has precipitated. In discharging th

construe an appropriate intervention (such as high doses of diazepam

C’s death to be an unintended side effect of the intervention. Thus, if 

proportionately grave reason—and from the description of the case it a

C’s physician can permissibly administer the sedating medication. Sh

while consistently maintaining her principled opposition to physician

tive euthanasia.

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been discussed. Although certainly not definitive, the discussion of th

the theoretical ideals of palliative medicine inform certain fundamental 

in turn provide guidance in clinical cases.

These cases and the principles they illustrate are not the only ones 

palliative medicine. We have not discussed a number of issues that rais

lems for palliative care physicians, such as issues that surround decis

hold medical interventions. To be sure, the principles that we have disc

relevant to these issues. For example, according to the rule of double e

not withhold food and fluids from his patient as a means to hasten the p

less, she could withhold or withdraw feeding tube treatment from a pa

dition had made him unable to eat if the treatment were disproportiona

this would forseeably (but unintentionally) shorten the lifespan of t

attempted to provide a full discussion of these issues here.

The cases that we have discussed in detail, however, are particularly i

sons. Studies indicate that ineffective communication between physi

tients is a major cause of inappropriate care for dying patients.6 Likew

rule of double effect has been cited as a key factor in the inadequa

symptoms in terminally ill patients.23 And—for HIV and AIDS patients 

of patient confidentiality remains a vital one as physicians struggle 

promote the well-being of their patients as they approach death.38, 39 

these pressing issues, a good understanding of the considerations dis

essential if health care providers are to respond adequately to the di

they now confront, and will continue to confront, in treating AIDS pat

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1. Manfredi PL, Morrison RS, Morris J, Goldhirsch SL, Carter JM, Meier DE. Pallia

how do they impact the care of hospitalized patients? J Pain Symptom Manage 

2. Doyle D, Hanks G, MacDonald N, eds. Oxford Textbook of Palliative Medicine. N

Press, 1998.

3. Velleman D. A right to self-termination? Ethics 109:606-28, 1999.

4. Chapman RC, Garvin J. Suffering: the contributions of persistent pain. Lancet 3

5. Cassell E. The Nature of Suffering and the Goals of Medicine. New York: Oxford 

6. Emanuel EJ. What is the great benefit of legalizing euthanasia or physician-assi

Ethics 109:629-43, 1999.

7. A controlled trial to improve care for seriously ill hospitalized patients. The stu

and preference outcome and risks of treatments (SUPPORT). The SUPPORT pri

JAMA 274:1591-8, 1995.

8. Brock D. Life and Death: Philosophical Essays in Biomedical Ethics. Cambridg

Press, 1995.

9. Emanuel L, Emanuel EJ. Four models of the doctor-patient relationship. JAMA 

10. Kuczewiski M. Reconceiving the family: the process of consent in medical decis

Center Report 26:30-37, 1996.

11. Jansen LA. Deliberative decision making and the treatment of pain. J Pain Sym

12. Beauchamp TL, Childress JF. The Principles of Biomedical Ethics, 4th ed. New Y

1994.

13. Sulmasy DP, Pellegrino ED. The rule of double effect: clearing up the double talk

50, 1999.

14. Jansen LA, Sulmasy DP. Sedation, alimentation, hydration and equivocation: car

at the end of life. Ann Intern Med. 136; 11:845-9, 2002.

15. Quill TE, Dresser R, Brock DW. The rule of double effect: a critique of its role in 

decision making. N Engl J Med 337:1768-71, 1997.

16. Sherman DW, Ouellette S. Physicians reflect on their lived experiences in long-t

J Palliative Med 3:275-86, 2000.

17. Ward A, Goldberg N, Miller-McCauley V, et al. Patient-related barriers to the ma

Pain 52:319-24, 1993.

18. Steinbrook R, Lo B, Moulton J, Saika G, Hollander H, Volberding PA. Preference

with AIDS for life-sustaining treatment. N Engl J Med 325: 457-60, 1986.

19. Wilson IB. End of life care in HIV disease: let’s talk. J Gen Intern Med 12:784-6, 

20. Kohut N, Sam M, O’Rourke K, MacFadden DK, Salit I, Singer PA. Stability of trea

although most preferences do not change, most people change some of their pre

J Clin Ethics 8:124-35, 1997.

21. Jones W, Rimer B, Kinman J. Cancer patient’s knowledge and beliefs regarding 

implications for educational programs. Patient Educ Couns 5:155-64, 1984.

22. Bratman ME. Intentions, Plans and Practical Reason. Cambridge: Harvard Un

23. Meier D, Morrison S, Cassel CK. Improving palliative care. Ann Intern Med 127: 

Chpt 17 1-17-03.p65 1363
364 U.S. Department of Health and Human Services • Health Resources and Services Administ

suicide in people with HIV-1 or AIDS: a qualitative study. Lancet 358:362-7, 2001

27. Hallenbeck JL. Terminal sedation: ethical implications in different situations. J 

3:313-20, 2000.

28. Jacobsen PB, Breitbart W. Psychosocial aspects of palliative care. Cancer Contr

29. Byock I. Dying Well: The Prospect for Growth at the End of Life. New York: Rive

30. Jansen LA, Ross LF. Patient confidentiality and the surrogate’s right to know. J 

28:137-43, 2000.

31. Lieberson AD. Advance Medical Directives, Cumulative Supplement. B. Rich, A

The Next Generation. Eagan, MN: West Group Publishing, 1999.

32. Siegler M. Confidentiality in medicine: a decrepit concept. N Engl J Med 302:1

33. Singer PA. Disease-specific advance directives. Lancet 344:594-6, 1994.

34. Stein MD, Stein JH. Disclosure of HIV status. AIDS Patient Care STDS 13:265-7, 

35. Bayer, R. Public health policy and the AIDS epidemic: an end to HIV-exceptiona

324:1500-4, 1991.

36. Mansergh G, Marks G, Simoni JM. Self-disclosure of HIV infection among men w

time since sero-positive diagnosis and symptom status. AIDS 9:639-44, 1995.

37. Cherney NI, Portenoy RK. Sedation in the management of refractory symptoms

evaluation and treatment. J Palliative Care 10:31-8, 1994.

38. Goldstein-Whetten, K, Nguyen TQ, Sugarman J. So much for keeping secrets: the 

of considering patients’ perspectives on maintaining confidentiality. AIDS Care 

39. Petchey R, Farnsworth W, Heron T. The maintenance of confidentiality in prima

a survey of policies and procedures. AIDS Care 3:251-6, 2001.

Chpt 17 1-17-03.p65 1364
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

INTRODUCTION

■ Twenty years of living with AIDS has underscored the importance of car

of fronts. One lesson learned is the necessity of addressing legal and fina

comprehensively as possible. This is crucial to maximizing the ability of 

access financial and health care resources, maintain control over thei

loved ones. At the advent of the AIDS crisis, too many people died witho

around legal and financial issues. Two decades of battling a disease concen

within marginalized communities has made clear the importance of using 

tools available, and fighting to expand the available legal and financial op

so that people living with HIV can enjoy the autonomy and sense of se

entitled. The goal of this chapter is to provide information about the leg

tools available to people with advanced terminal HIV disease, although i

these tools are equally relevant for those individuals in the earlier stage

Fortunately, today there are many legal and financial planning options t

with HIV in the United States with the power to make critical decisio

care, finances, dependent children, and end of life options. Expanded 

other government-funded programs provides health care access to peop

requiring an AIDS diagnosis. Newly created government and private 

many people living with HIV access to much-needed financial support. R

guardianship laws in several States make it possible for a parent to ap

children during periods of incapacity without forcing her to surrender 

prematurely. Court cases in many States have legitimized living wills, all

of artificial life support when an individual has clearly expressed such 

drafted and properly executed wills provide people living with HIV with 

the disposition of their assets and personal belongings upon death.

For people living with HIV, estate and financial planning is central to 

personal decisionmaking and financial resources. Delaying important 

results in the wishes of the person living with HIV being thwarted. For 

that a standby or temporary guardian may be needed to care for child

the legal process necessary to appoint one could eventually result in 

guardian other than the one the parent intended. Even worse, children 

custody. Similarly, when a person living with HIV fails to execute a heal

best friend as her agent, it is likely that her health care providers will turn 

relatives to make important medical decisions on her behalf. When 

leaves employment and fails to exercise her rights to continued group 

the Consolidated Omnibus Budget Reconciliation Act of 1986, or COB

cost-effective and comprehensive health care coverage may be lost. 

with HIV lets a disability insurance policy lapse because of her inabi

when in fact the policy contained a premium waiver for disabled peop

hardships may ensue.

Robert Greenwald, JD, and Nima Eshghi, JD

Chpt 18 1-17-03.p65 1365
366 U.S. Department of Health and Human Services • Health Resources and Services Administ

PART 1.

ACCESSING INCOME AND HEALTH CARE SUPPORT 

Federal and State governments and the private insurance industry offer a 

designed to ensure that disabled individuals, including those living w

financial resources and health care and treatment programs. These p

to people living with HIV, particularly those who find themselves wit

basic necessities, such as food, shelter, and clothing, let alone meet t

with the care and treatment of a debilitating illness such as HIV.

A. INCOME SUPPORT

1. Federal Social Security Programs

The Federal Social Security Administration (SSA) provides two 

programs for disabled individuals: Social Security Disability Insurance (

Security Income (SSI). Both programs provide financial support on a m

individuals. Individuals living with HIV may be eligible for one of thes

In order to be eligible for either SSI or SSDI a range of rules apply. For bo

must be permanently and totally disabled. The SSA defines disability as a 

(physical or mental) that prevents or is expected to prevent an individ

substantial gainful activity for 12 or more consecutive months, or will r

diagnosis will often qualify an individual as disabled. The additional eligibil

are discussed in detail below. More information on these programs is a

SSA at 1 (800) 772-1213 or on the SSA web site at www.ssa.gov.

■ Social Security Disability Insurance (SSDI or SSD)

SSDI, often shortened to SSD, is a governmental disability insuranc

to the eligibility requirement that an individual must be permanent

as defined by the SSA, successful applicants must have a lawful im

have a sufficient work history. Since SSDI is a federal insurance pr

based program an individual’s income or assets generally do not effec

benefit payments.

The SSDI program pays a monthly benefit to disabled individuals wi

sufficient Social Security contributions through payroll deductions o

premiums (under the Federal Insurance Contribution Act, or FICA). Wh

contributions depends upon an individual’s age at the time she or he 

• Those 31 years of age or older must have paid sufficient taxes fo

40 3-month periods or “quarters.”

• Those between the ages of 24 and 30 must have paid sufficient t

the quarters between their 24th birthday and the time of disabi

Chpt 18 1-17-03.p65 1366
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

Monthly SSDI benefit levels vary greatly depending upon Social S

age at the onset of disability and date of disability. A monthly bene

the dependent spouse or children of an SSDI recipient.

There is a 5-month waiting period for SSDI. Monthly disability p

start of the 6th month after the onset of disability. Upon applying 

may be entitled to past due benefits if the SSA determines that t

disabled prior to application. Past due benefits are limited to up t

Receiving past due SSDI benefits can have an adverse impact on a

Medicaid eligibility since both SSI and Medicaid are need-based 

asset limits for eligibility. In such circumstances, consulting wit

attorney is advised as steps can be taken to maximize a person’s 

assets and remain eligible for need-based programs.

After a disabled person has received SSDI for 24 months, she is au

Medicare coverage. The total Medicare waiting period for an SSDI r

given the 5-month waiting period for SSDI benefits to begin. Depend

status, an individual may also be eligible for Medicaid.

■ Supplemental Security Income (SSI)

SSI is a need-based program that provides monthly benefits to individ

blind, or over 65 years old and who have limited income and asse

determined to be eligible for SSI, an individual with HIV is entitled 

until death or until the individual is no longer disabled.

For an individual living with HIV, in addition to the requirem

permanently and totally disabled as defined by the SSA, there are 

immigration status rules, and income and asset restrictions.

In general, in order to be eligible to receive SSI payments an ind

citizen, a noncitizen who was receiving SSI on 8/22/96, or a lawfu

who entered the U.S. before 8/22/96.

An individual cannot have more than $2000 in assets, excluding a h

resides there), and a car (if it is regularly used for transportation to m

If an individual is married and living with a spouse the asset limi

limit is $5,000 for a disabled child living with two parents.

Strict income limits also apply. To be eligible for SSI an individual

income” must be less than her SSI benefit level. Countable incom

SSI benefit level will result in ineligibility for SSI for each month i

received. Not every dollar received or earned by a disabled individua

In general, countable income includes unearned income (i.e., in

and the value of in-kind gifts and services, minus a $20 set-aside. I

Chpt 18 1-17-03.p65 1367
368 U.S. Department of Health and Human Services • Health Resources and Services Administ

income - $20 set aside = $30 deducted from his original $530 S

• Jane is a disabled single individual eligible to receive $530 per 

She has started a small home business and earns $245 per mo

$450 in SSI. ($245 in earned income - $20 set-aside - $65 earne

$160. One-half of the $160 =$80 of countable income. The orig

– $80 of countable earned income = $450.)

A base SSI monthly benefit amount is set by the SSA, and State g

option to increase that amount through a State supplement. Ni

State supplementary SSI payments increasing the total SSI bene

benefits therefore vary from State to State. Benefit levels also dep

arrangements. For example, an individual who lives in someone 

receive SSI at a lower level than an individual who lives alone. SSI 

of payment if an individual’s living arrangements change. The Feder

for SSI is $530 for a single individual, and $398 for a member of a 

live in another person’s household.

Only the disabled person may receive SSI. There are no benefits av

dependent children of a disabled person, unless they are also disa

one or more parents may, however, entitle the remaining family m

form of government assistance. (See discussion of TANF below.) It 

individuals apply for SSI as soon as possible since there are no ret

In many States, recipients of SSI are automatically eligible for Medicai

recipient must independently apply for Medicaid. In those States, M

generally successful as most States use the same criteria for determini

the SSA uses for SSI eligibility.

2. Temporary Assistance to Needy Families (TANF)

TANF is an income assistance program funded and regulated by bo

governments. The program provides cash and automatic medical assis

they can provide basic necessities for their children. Because TANF 

welfare departments, eligibility, calculation of benefits, work requir

vary from State to State.

Generally, TANF provides assistance to eligible families consisting of a 

more minor children. Most States also provide assistance to families 

one parent is disabled or unemployed, or income is below a given leve

lives with a relative who is not a parent, and pregnant women. Nearly 

children, exclusive of any parent or guardian, to qualify for assistance

Families are eligible for cash assistance if their income is below the est

States also take assets, excluding the family home, into consideration

Chpt 18 1-17-03.p65 1368
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

disability varies from State to State, although in many States it is an 

than the SSI disability standard in that it only requires incapacity r

parent’s ability to work for at least 30 days.

TANF was created in 1996, to replace Aid to Families with Dependent 

the Personal Responsibility and Work Opportunities Act of 1996 (ofte

reform). Families eligible for TANF may also be eligible for Food Stam

Children (WIC), School Breakfast and Lunch, Fuel Assistance and oth

low-income persons.

3. Other State-Run Income Support Programs

Many States provide need-based income support programs to indivi

reasons are ineligible for SSI or TANF. These programs are wholly funde

eligibility rules and program benefits vary from State to State. Several 

that provide income support to individuals, including those living with 

SSI or TANF disability requirements. In some States, citizenship 

requirements are more flexible. In general, information on the program

is available through the State welfare office and/or community-based 

4. Private Disability Insurance

Private disability insurance is designed to replace income lost as a re

that prevents an individual from working. The insurance coverage is ge

(up to 2 years) or long-term (up to age 65 or for life). For those who 

insurance policy, upon disability, the policy will generally pay a monthl

a percentage of an individual’s predisability earnings or to a maximum 

Coverage terms vary greatly as private disability insurance companies ha

in setting the parameters of coverage. Policies include varying defin

policies consider a person disabled if she is unable to perform the m

job, others consider a person disabled only if she is unable to do any job

qualification periods. Some policies require that an individual be dis

receiving benefits, others preclude coverage for the first year of disabili

disability premium waivers that waive the payment of premiums after a 

and receiving benefits for a specific period of time. (It is extremely 

whether such a provision exists. Many individuals let their policies 

because they could not afford the payments when in fact premiums cou

coverage remaining in place.) To determine the exact terms and cond

it is often necessary to obtain a copy of the policy and have it reviewed 

Disability insurance policies are generally obtained three ways: em

programs, and individual programs. Employer programs are the most com

insurance policies provided through an individual’s employment. T

Chpt 18 1-17-03.p65 1369
370 U.S. Department of Health and Human Services • Health Resources and Services Administ

under the group plan if she was qualified for the coverage at the tim

Coverage will in part depend upon whether or not the policy contain

application take place within a specified timeframe after the onset of 

Group programs are disability insurance policies provided through vario

fraternal, and other affiliation groups. Individual policies are purchased 

In most cases, an individual will know if she purchased a group or individ

tends to pay her own premiums and receives statements under these p

5. Life Insurance: Accelerated Benefits and Viatication

While life insurance polices are generally designed to provide incom

of a deceased life insurance policy holder, they can also provide much-n

a person living with HIV. Many life insurance policies include an accel

that allows a terminally ill person with HIV to obtain a portion of the 

that would normally be reserved for the surviving beneficiaries. The r

the surviving beneficiaries upon the terminally ill person’s death. In 

benefits provisions, the definition of terminally ill is defined strictly 

1 year or less.

In addition, private viatical settlement companies are often willing to pu

of a person living with HIV and pay a percentage of the value of the poli

constitutes terminal illness is more flexible in viatication, but it is im

person’s life expectancy is greater than 2 years the proceeds received w

tax purposes. With viatication, the policyholder sells the policy to the via

and upon the policyholder’s death all of the life insurance proceeds are di

An individual considering either an accelerated benefit or viatication 

attorney or benefits expert. The viatical settlement industry, in particu

and the transaction requires oversight to ensure that a person living with 

terms of sale.

B. HEALTH CARE ACCESS SUPPORT

1. Medicare

Medicare is government health insurance covering people over 65, th

Since it is a Federally administered program, Medicare rules are co

country.

Medicare coverage consists of two parts: Part A (which is free) cove

skilled nursing care, and hospice care; and Part B (which is optional 

premium) covers doctor’s services, outpatient hospital services, and o

an individual elects Part B coverage a monthly premium is deducted 

although some States have a program for people living with HIV that co

neither Part A nor Part B covers outpatient pharmaceutical drugs.

Chpt 18 1-17-03.p65 1370
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

■ Medicare Hospice Benefit

The Medicare program also offers a hospice benefit for those wh

with a life expectancy of 6 months or less. The hospice benefit pro

services, all of which concentrate on improving an individual’s q

possible during the end stages of a terminal illness. The Medicar

four categories of care: 1) routine home care, 2) continuous hom

respite care, and 4) general inpatient palliative care related to term

benefit includes services provided by a broad range of caregive

nurses, therapists, home health aides, clergy, social workers, and 

the purchase or rental of any durable medical equipment necessary 

in the home. In addition, the program covers the costs of service

Medicare such as outpatient drugs, respite care, custodial care

care in the home during medical emergencies. The Medicare h

covers all these programs and services in full. The amount of care 

needs of the individual and the resources of the hospice–Medic

minimum limits on the amount of care provided. There may b

respite care or prescription drugs. The Medicare hospice benefi

treatment of terminal conditions for individuals who have elected h

does, however, pay for curative treatment for unrelated conditions, 

from an accident or a fall.

In order to qualify for the Medicare hospice benefit, individuals 

program requirements. They must 1) have Medicare Part A, 2) be c

physician and the medical director of a Medicare-certified hosp

terminal illness with a life expectancy of 6 months or less if the 

course, and 3) consent in writing to choosing palliative care ra

Despite these requirements, it is important to note that patients 

severely deteriorated physical condition or in an irreversible m

choose hospice. Choosing hospice earlier in the process, as long a

are met, often results in greater comfort and satisfaction for ind

chronic, terminal condition. Moreover, a patient’s decision to pu

than curative care is not final. Any individual who has chose

curative treatment under the traditional Medicare program at 

from the hospice program.

Hospice care is divided into the following benefit periods: two 90

an unlimited number of 60-day periods. These benefit periods m

or at separate intervals. Regardless of how an individual’s per

timed, she must be certified as terminally ill with a life expectan

the beginning of each period by the medical director of the hospice

to withdraw from hospice during a benefit period, then any rema

Chpt 18 1-17-03.p65 1371
372 U.S. Department of Health and Human Services • Health Resources and Services Administ

Medicare-certified hospices may be located by contacting the S

the discharge planning office of a hospital, or the National Me

MEDICARE. Information about hospice care is also available from 

of America at (202) 546-4759 or the National Hospice Organizati

2. Medicaid

Medicaid is government health insurance funded jointly by the Feder

and administered by State government. Under State administration, S

regarding who is covered by the program and what services are provi

greatly from State to State.

All States must provide the following Federally mandated Medicaid se

services, outpatient hospital services, laboratory and x-ray services

services, physician’s services, early and periodic screening, diagnosis 

family planning services and supplies.

Federally optional Medicaid services include the following: prescribed 

home health care services; nursing home services and intermediate care 

medical goods; private day nursing services; clinical services; podiatry; 

occupational and speech therapy; optometrists; and hearing aids.

In general, Medicaid’s resource or asset limitations are similar to th

eligible for Medicaid an individual cannot have more than $2000 in ass

the individual resides there), a car (valued at $4,500 or higher if 

transportation to medical appointments), and a few other exceptions. (U

there are strict ineligibility rules regarding the transferring of assets 

Medicaid eligibility. A transfer of assets to meet Medicaid’s resourc

prolonged period of ineligibility and thus should never be attempted wit

guidance.)

There is no income limitation for Medicaid eligibility. However, if a

income exceeds the SSI level, most States will consider this surplus in

equivalent value of medical expenses.

Historically, the path to Medicaid eligibility for disabled individuals 

eligibility. More recently, States, with the cooperation of the Federal C

Medicaid Services, have implemented health care access expansions 

States, pre-disabled persons with HIV are now eligible for Medicaid. In 

restrictions have been eased, allowing those with greater resources ac

Since the rules regarding access to Medicaid and the range of servic

from State to State it is important to contact the State Medicaid office to d

of the program in your State and to obtain assistance with the applica

Chpt 18 1-17-03.p65 1372
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

polices offered can differ widely in terms of cost and coverage. Priva

offer a broad range of plans so the particular terms will depend upon 

Many health insurance policies include benefits limits, including spec

a maximum benefit for the policy as a whole. Others include copayme

“out-of-pocket” expenses that an individual is responsible for paying. S

choose any doctor, whereas others restrict access to health care prof

with the plan.

Understanding the specific health insurance terms under any individua

questions can be answered by customer service staff provided by th

through the human resources department of an employer who provides 

An in-depth analysis of the terms of a policy often requires obtaining 

review by an attorney or benefits expert.

Finally, many States operate programs that pay the private health insura

living with HIV. It is, therefore, always important to see if such a “buy-in” 

individual decides to terminate her private health insurance. The spe

from State to State, but some cover individuals receiving and/or eligib

disability insurance, Medicaid, and Medicare. For many people living w

represent an opportunity to maintain their preferred choice of health ca

4. The Consolidated Budget Reconciliation Act of 1985 (C

COBRA is a Federal law that requires employers who sponsor a gr

their employees and/or their dependents to remain covered under t

leave employment or are no longer qualified for coverage under the p

continued coverage is available to employees who were covered under t

work hours, leave their employment, or are terminated for reasons othe

This continuation of coverage is also available to the spouse and/or d

employee if they were covered under the plan. This coverage is very im

to group health insurance is generally cost-effective and provides a b

than those typically found in individual policies.

For many disabled individuals leaving employment, COBRA offers the 

comprehensive health insurance available. This is true despite the 

generally required to pay the premiums or costs of this private g

(As discussed above, in the private insurance section, many States have 

these costs.)

In the context of HIV, whether paid for through a government prog

COBRA offers much-needed insurance coverage to those ineligible for 

program. For those eligible for Medicare through SSDI, COBRA can pro

29-month Medicare waiting period. (See SSDI discussion on page 366 

waiting period.)

Chpt 18 1-17-03.p65 1373
374 U.S. Department of Health and Human Services • Health Resources and Services Administ

COBRA coverage must be elected by the later of 60 days after leaving 

days of receiving notice of COBRA rights by the employer. Employer

provide written notice of COBRA rights within 45 days after a person l

The length of COBRA coverage depends upon several factors. In gener

for 18 months. For those determined to be disabled by the Social Sec

SSI or SSDI purposes, at any time within the initial 18-month period, 

months. In general, COBRA coverage is 36 months in the event of the dea

for the loss of dependent child status under the plan, for divorce o

covered employee, or when the covered employee becomes eligible for 

5. State-Run Health Care and Treatment Programs

Many States support health care programs for individuals living wit

means of accessing treatment. Through a combination of Federal and 

the Ryan White Comprehensive AIDS Resources Emergency (CARE) A

programs that provide early intervention health care and access to med

are administered by States and, therefore, the services provided vary 

the programs in your State is available through the State health depart

based AIDS organizations.

PART 2.

LEGAL OPTIONS FOR MAXIMIZING CONTROL OVER

DECISIONMAKING DURING PERIODS OF INCAPACIT

Several important legal tools are available to people living with HIV 

maintaining control over important personal, financial, and health-re

care proxies, living wills (also known as directives to physicians), 

declarations as to remains all provide an individual living with HIV 

clearly express her wishes with respect to crucial personal matters. 

living with HIV to appoint a trusted friend or family member to carry 

behalf. A critical point regarding each of these legal options is that non

the individual’s own judgment or curtails her decisionmaking capacit

competent and able to act on her own behalf. All of the documents a

revocable, so a person can change her mind about any decisions at 

revoke the document any person previously appointed should be notifie

and the original document should be destroyed.

1. Health Care Proxy

A health care proxy is a written instrument in which an individual le

to another person (referred to as “the agent”) to make certain health

Chpt 18 1-17-03.p65 1374
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

these decisions when the individual who appointed her is either unab

communicate, those decisions herself. Indeed, a good health care proxy s

directing that physicians and other health care providers make every 

with and solicit a response from the patient first, before relying on 

patient’s behalf. Of course, the patient may also choose to direct her 

consult with or defer to the health care agent even during times wh

communicate but finds it difficult or stressful to do so. What is critical 

the choice to include the agent remains firmly with the patient, so lon

competent and able to communicate.

In the absence of a properly executed health care proxy, decisionma

health-related matters generally defaults to a person’s “next of kin,” 

closest adult biological family member that can be found. The adva

proxy is that it vests control in a trusted individual specifically cho

increasing the likelihood that the patient’s wishes regarding health

honored. A person living with HIV is free to choose any competent adu

care proxy. One can also name two co-agents in the health care p

responsibility for decisionmaking. A person naming two agents is advis

of the two agents to work together and to consider naming one whose d

the event of a disagreement. It is not advisable for a person to appoi

provider as a health care proxy. The primary purpose of the appointm

with a strong personal relationship to the person living with HIV, who ca

to make difficult health care decisions.

An additional advantage of a health care proxy is that it can be specific

person’s preferences, beliefs, and instructions regarding health-relate

benefit of giving a person living with HIV an opportunity to clearly com

the health care agent before a health-related crisis occurs. Such com

patient living with HIV and her health care proxy is crucial, because th

is to make health care decisions that accurately reflect the preferences 

and not the proxy’s own preferences.

In most States, the health care proxy is authorized by statute and tha

mechanical requirements that must be met in order for the document to 

requirements include the number of witnesses that must be presen

document, the minimum age of the appointed agent, and the signature 

the appointment in one or more places on the document itself. It is 

health care proxy document be notarized, regardless of whether 

requirement under a particular State’s health care proxy law. Notariz

level of legitimacy to a document that may protect against future challen

or health care providers.

Chpt 18 1-17-03.p65 1375
376 U.S. Department of Health and Human Services • Health Resources and Services Administ

individual’s intent not to be kept alive by artificial means. A living wi

patient elects to forego other life prolonging treatments, such as artificia

via IV, antibiotics, and in, some cases, blood transfusions. Exception

when explaining these options and their effects to a terminally ill patie

precisely represents the patient’s intent with respect to these life-prolo

People living with HIV who are opposed to being placed on prolonged 

occurrence of brain death or a terminal diagnosis are advised to execut

communicates their opposition. In the absence of a living will evidencing 

can find themselves both ethically and legally bound to do everything t

alive – even if the person is clinically brain dead and being kept alive sol

life support measures. By the same token, many physicians, particula

working with people with HIV, are familiar with and generally respectfu

by those who choose to execute living wills. It is a good idea for an indiv

to be aware of the existence of a living will when one has been prepar

Bear in mind that some hospitals with particular religious affiliations m

a patient’s expressed wishes even if a living will has been prepared and 

staff. In some cases, particularly where there is no law or statute auth

living will, the religious institution that participates in setting hospit

staff not to recognize living wills. Thus, people living with HIV who 

being placed on prolonged life support should consider where they receiv

the religious affiliation of their provider is likely to affect that provider

honor the living will.

Laws in this sensitive area vary widely from State to State, and, in 

statutory authority for living wills. There have been, however, many impo

a person’s right to be taken off artificial life support and those case

honoring a person’s desire to terminate life support when it can be pr

clearly expressed in advance. Still, it is advisable to work with someon

your particular state when preparing and executing a living will.

State-specific forms for living wills and for health care proxy (assign

health care) can be downloaded free from the web site of Partners

Partnership for Caring on the web at www.partnershipforcaring.org/H

by phone at 1-800-989-9455. Five Wishes is a document that helps p

want to be treated if they are seriously ill and unable to speak for them

be ordered for $5.00 from Aging With Dignity, P.O. Box 1661, Tall

www.agingwithdignity.org or 1-888-594-7437.

Chpt 18 1-17-03.p65 1376
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

document can grant broad authority to the agent, allowing the agent to 

control over the principal’s financial and legal matters. Or, the authori

and specific, such as allowing the agent to sell the principal’s home an

particular purpose designated by the principal. A power of attorney tha

more useful for someone who anticipates a long period of hospitalizati

needs an agent who can access bank accounts, pay bills, pick up chec

other daily financial matters as they arise. In either case, the agent h

known as “the fiduciary duty,” not to abuse the assets of the princip

benefit.

As with the health care proxy, the absence of a properly executed pow

interfere with the ability of a person living with HIV to make her ow

trusts to handle her financial and legal matters. It should be noted, tho

is incapacitated, a court may appoint a guardian or conservator for tha

on a petition filed by a family member) who is different from and whos

over the power of attorney. Still, in many cases, the durable power 

economic affairs of the principal through periods of incapacity or abse

The authority granted to the agent by the power of attorney docum

principal’s death. The authority under the power of attorney dies with the 

the principal has a valid will, power transfers to the executor (also kno

“personal representative”), who then assumes responsibility (with judic

with financial matters, paying debts, and distributing assets in acc

provisions.

4. Declaration as to Remains

The declaration as to remains is a document that, in essence, allows 

to plan her own funeral and decide what will happen with her body 

expressing choices and preferences regarding burial, cremation, fun

services, and other arrangements, a person living with HIV can ensure th

out and can also avoid potential controversies between biological family m

or close friends. Because it is a less familiar document to most people

or a health care proxy, it is a good idea for a person who executes a dec

make the existence of the document known to the person or persons wh

out the wishes and plans specified within it.

Unfortunately, in some States, there is no statutory authority or law au

a declaration as to remains and, in others, the law states that a person

become the possession of the person’s “next of kin,” a legally defined r

Chpt 18 1-17-03.p65 1377
378 U.S. Department of Health and Human Services • Health Resources and Services Administ

funeral and decide what will happen with her body upon death despite 

laws; 2) it provides clear direction to loved ones regarding an indivi

wishes; and 3) if a controversy does emerge, either between “next of 

close friends, or within biological families as is also often the case, the pr

as to remains may be persuasive in resolving the dispute.

PART 3.

INSURING PROPER DISTRIBUTION OF FINANCIAL

ASSETS, PROPERTY, AND PERSONAL BELONGINGS

Comprehensive estate planning is the only way to insure that the finan

and personal belongings of a person living with HIV are distributed 

wishes. The advantage of estate planning is that, using conventional t

bank accounts, and life insurance policies, an individual living with 

assets to anyone she chooses,*

 and thus she can protect and provide fo

there is no biological or marital relationship. Without an estate plan 

deceased individual are distributed in strict accordance with State in

specify who inherits, and in what order, and which do so in a manner tha

and biological relatives as proper heirs.

Despite the obvious advantage of estate planning, it is often difficult to 

with HIV of the need to make a will or of the importance of financial an

would ultimately provide for a smoother transfer of assets. There ar

planning, including the natural resistance to thinking about one’s dea

myth that estate planning is only necessary for people who are wealth

assets available to distribute to loved ones. A person of limited means m

an estate plan is unnecessary because she does not have anything th

want or value. In reality, however, this is almost never the case. Irresp

most people living with HIV will have personal belongings that carry 

those who are left behind. Over the years, there have been far too man

families, or between family members and life partners or friends, over i

value such as diaries and other personal writings, photographs, books 

specifically designates who is to receive such items, or, a plan that inclu

items away during one’s lifetime, can guard against future heartache a

* There are a limited number of exceptions to the general rule that a person may distribute asse

states, a person may not use her will to disinherit a spouse. The specific laws vary from stat

granted in these cases is the “elective share.” Elective share statutes provide that a specific 

made available to the disinherited spouse. In addition, several states have statutes that protect 

were unintentionally disinherited. Finally, some states have statutes that limit a person’s ability 

is survived by a spouse, parent, or children. Nonetheless, the presence of these statutes does 

money, property, or other personal belongings to other loved ones, such as a friend or life pa

amount available to others by virtue of providing a mandatory share of the estate to spouses, pa

Chpt 18 1-17-03.p65 1378
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

documents.

1. Probate versus nonprobate assets

When a person dies, some of the property they leave behind will be “p

“nonprobate.” “Probate” is the legal term for the process whereby prop

a will is accounted for, gathered, and then distributed to the persons n

was no valid will the probate assets will be distributed under the in

specified under the State laws where the person living with HIV was 

assets are those assets that pass automatically to a chosen beneficiary 

nonprobate assets include life insurance policies with named benefic

for” bank accounts, and trusts created outside of a will.

There are many advantages to nonprobate assets. Because they pass o

not subject to the probate process, loved ones do not have to endure a 

access the assets that have been left to them. In addition, the distribu

is much more difficult to challenge than the terms of a will. Whereas w

courts and subject to challenge and scrutiny, nonprobate assets pass to t

quickly and quietly, without the need for a public accounting. Also, asse

of an estate can become subject to the claims of creditors. Creditors h

of debt to the attention of the court where the estate has been pro

advisable for persons living with AIDS to examine their assets and det

and should be moved into the “nonprobate” category.

■ Bank Accounts

Bank accounts are an excellent example of the type of asset that ca

the nonprobate category. If a person has a bank account with on

contents of that bank account will automatically become subjec

death. There are two primary options available for turning a 

nonprobate asset: a joint account, or an in trust for account. 

account that lists two account holders on the same account. Both 

full and equal access to the funds in the account. If one co-holder b

the other has easy access to the funds. If one co-holder dies, th

become the property of the surviving account holder. Probate is a

very limited circumstances, creditors cannot get access to the fu

the decedent. The downside of a joint account is that joint co-holder

access to the funds at all times and thus, if one co-holder wanted t

all the money at any time and leave nothing for the other account 

An in trust for account avoids the problem of two people having f

funds in the present. Instead, an in trust for bank account allow

beneficiary who will receive the proceeds from the account u

Chpt 18 1-17-03.p65 1379
380 U.S. Department of Health and Human Services • Health Resources and Services Administ

■ Life Insurance and Pension Plans

Proceeds of life insurance and pension plans that pay out to a nam

person’s death are nonprobate assets. The key here is to make s

has been named. Most plans and policies will allow the policyhold

one beneficiary. For example, a person living with HIV might des

and her two children as the beneficiaries of her life insurance pol

allow the policyholder to specify the shares allotted to each be

spouse and 25% each to two children). An important part of estate p

checking to make sure that the company holding the policy has th

regarding intended beneficiaries. If there are no beneficiaries nam

named predeceases the policyholder, the ability to control who rec

lost. Without a beneficiary named, many benefit plans will autom

proceeds to the policyholder’s next of kin, or distribute the proceed

estate to be accounted for and distributed along with the other pr

■ Forms of Real Property Ownership

If a person living with HIV owns real property with another pers

examine the deed to determine the form of ownership. There are two 

co-ownership that avoid probate and allow the property to pass 

survivor upon death of the co-owner. The first form of co-owners

entirety” and is only available to legally married couples. Property 

the entirety is often the best possible option for married couples b

avoid probate and allow the property to automatically pass to the s

also avoids taxation upon the death of one spouse (that is, the s

taxed on the inheritance because she already owned the “entirety

For unmarried partners and other co-owners who prefer automatic p

to the other co-owner upon death, the best available tool is owning 

rights of survivorship.” Under this form of ownership, the title to the 

passes to the survivor upon the death of the joint owner. Property t

the right of survivorship allows the surviving owner to sell the proper

seeking court approval in probate after the co-owner’s death. In 

property does not bear the risk of a challenge that accompanies 

Thus, joint ownership with rights of survivorship is an excellent e

It is critically important to be aware that if two unmarried peopl

together and the deed does not specifically refer to rights of surv

common will be presumed. With a tenancy in common, the co-own

property upon the death of the other owner. This may be an appropr

for co-owners who do not intend to have the other co-owner inherit 

who might prefer that their half of the property be distributed to o

members in accordance with the terms of their will.

Chpt 18 1-17-03.p65 1380
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

trust. The person with control over the distribution of the assets 

trustee. The person living with HIV who created the trust may ma

name herself as the trustee, and name herself as the sole beneficia

This will give her complete control over the assets within the tru

This type of revocable living trust is often the best way for a per

maintain control of her assets during her lifetime and ensure th

assets upon her death. As long as there is a successor trustee and a 

or beneficiaries named in the trust, the successor trustee can tran

or assets to the named beneficiaries without any probate court 

death of the person who created the trust.

In order to be a valid legal document, the individual creating the 

have it notarized. The document does not have to be witnessed or rec

familiar with estate planning can assist a person living with HIV i

2. Wills

A will is a central component of any estate plan. It is a legal docume

leave any portion of her estate, and any specific possessions, to any other 

Despite the emphasis placed on removing assets from probate, there will 

held by the individual that cannot practically be held as joint prope

When a person dies without a valid will, all of her probate property pa

the intestacy laws of her state. Because intestacy laws universally favo

do not recognize unmarried partners, close friends, or other people 

want to inherit all or part of her estate, a valid will is crucial.

In most States, there are very few formal requirements for drafting and 

general, a will must sufficiently describe an individual’s possessions and 

them. The will must be signed and dated by the person and then by tw

beneficiaries under the will. Despite the fact that executing a will is re

absent emergency situations, individuals should not attempt to exe

assistance of an attorney.

3. Homesteading

Many States have homestead laws that allow homeowners to protec

from creditors. Filing a petition for homestead exemption (literally, a 

property from access to creditors) can be an important part of estate a

people living with HIV, particularly those who are worried about high 

Filing early is strongly advised, as many States only exempt debts incur

homestead petition. The extent of the homestead exemption varies fr

filing requirements, so it is a good idea to consult with an attorney in th

Chpt 18 1-17-03.p65 1381
382 U.S. Department of Health and Human Services • Health Resources and Services Administ

attorneys and/or debt counselors can provide many services to assist p

addressing their debt issues.

Under many State fair debt collection laws, notification of representa

creditors from further collection efforts aimed directly at debtors. In e

can often eliminate threatening letters and phone calls.

Next, an assessment of the persons debts and the potential for at leas

be evaluated. While many debts can easily be forgiven, through a d

through the courts, some types of debt are very difficult to discharge. 

student loans and Federal, State and local tax debts is quite difficu

where the creditor owns an interest in the property held by the credit

home mortgages, will generally result in loss of the secured property. 

other hand, are generally easily dischargeable.

With this in mind several courses of action can be taken. Many disabled 

those who are not earning income, who have limited assets and who 

based public benefits (i.e., SSI, TANF), are effectively “judgment proof.” 

creditors and informing them of this situation will result in a disabi

forgiveness of the debt. In other cases, when a person’s assets or inco

a creditor refuses to forgive the debt, personal bankruptcy may be the 

An attorney can assist a person living with HIV in negotiating with cre

bankruptcy petition. The filing fee for a personal bankruptcy petition i

$200, and ironically it is one of the filing fees that the court will no

through a bankruptcy court proceeding, a bankruptcy court judge will 

disabled person living with HIV. Most bankruptcy judges, however, wi

the filing fee in periodic installments upon request.

PART 4.

PERMANENCY PLANNING:

SECURING THE FUTURE OF AFFECTED CHILDREN

There may be no more sensitive issue for parents living with HIV than h

of their minor children. No parent wants to contemplate a time when she 

to care for her children. Indeed, parents living with HIV often resist p

their children because it is overwhelming to think about someone el

and also because of a lack of information about parent-friendly planni

In addition, some parents living with HIV may have minor children wh

children also have HIV, the permanency planning must take into ac

proposed guardian(s) to meet each child’s specialized medical, social

Chpt 18 1-17-03.p65 1382
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

1. Standby Guardianship Proxy Laws

In States where it is available, the standby guardianship proxy law 

tool for parents living with HIV. Under the standby guardianship law

have minor children in their care can legally arrange for someone to s

children during periods of incapacity, without giving up their own par

States have enacted standby guardianship proxy laws.§ Parents livin

with an attorney in their State to see whether standby guardianship is 

Standby guardianship allows a parent or legal guardian to designate an a

child during periods of incapacity without forcing the parent to give up cu

her parental rights. As such, it is a particularly useful tool for parents liv

times, require long hospitalizations or find themselves unable to care f

anticipate recovering enough to resume parental responsibilities. The 

standby guardian typically involves filing a petition with the appropriat

probate court) along with supporting documentation. In most States, th

signature of the parent(s) or legal guardian(s) as well as the signature o

appointed the standby guardian proxy for the child(ren). If the child i

assent is required. The court may also inquire into the fitness of the pr

proxy, by examining her criminal history or looking into any prior involvem

overseeing the welfare of children. If there is another legal parent, other 

seeking to appoint the proxy, that parent must be notified. If the other p

child and objects to the appointment of the proxy, the court is unlikel

guardianship petition. It should also be noted that, in some States, stan

available to parents or legal guardians who are suffering from a chronic

In those States, the petition for standby guardianship must present eviden

that may interfere with a parent’s caretaking duties.

Once the standby guardian proxy is approved by a court, the proxy’s aut

role begins upon the death of the parent, the consent of the parent, or t

to care for the child as certified by a health care provider. There is n

once one of these triggering events occurs. Once effective, the prox

behalf for the period of time specified in the statute. Here again, law

State to State. Some States allow the standby guardian proxy to act in t

90 days (for example, Massachusetts), while others allow for a greater 

(for example, New Jersey). If the parent’s incapacity to care for the c

statutory period, or if the parent dies, the standby guardian proxy mu

petition for permanent guardianship of the child now in her care.

§ States that have standby guardianship proxy laws are Arkansas, California, Colorado, Connectic

sachusetts, Minnesota, Nebraska, New Jersey, North Carolina, Pennsylvania, Virginia, West Vir

working to introduce and insure passage of standby guardianship legislation in many of the sta

Chpt 18 1-17-03.p65 1383
384 U.S. Department of Health and Human Services • Health Resources and Services Administ

can no longer care for her children, or anticipates that she will soon be 

permanently, one advantage of initiating the permanent guardianship 

still living is that she can participate in the court proceedings and let th

for selecting a particular person as the guardian. This level of involveme

process is important in that it allows the parent living with HIV to ma

over the future of her children. Once the permanent guardianship is e

longer has to worry about who will care for her child if she dies.

The process for appointing a permanent guardian is similar to the stand

in that they both require the filing of a petition with supporting docume

a judge, and notice to, or assent of, the other living parent where 

investigate the proposed guardian’s background, including criminal his

with child welfare authorities. Some judges might scrutinize the fitness 

more carefully than they would in a standby guardianship proceeding b

nature of the appointment. Once the permanent guardianship is a

authority to make decisions and care for the child is effective immed

child turns 18 years old.

Children above a certain age must also consent to the appointment, and 

older children must appear in court and consent orally or whether a 

suffice. States also vary as to the age at which the minor’s consent is re

age and above is typical, but some States require a minor’s consent be

3. Transfers of Custody/Modification of Custody Orders

Modifying existing custody orders to transfer physical or legal custo

planning tool available only to those parents whose children’s custodi

prior determination by a court. When a married couple with children 

approves the divorce agreement – or that hears the case in the event 

also enters a judgment, called an “order,” regarding custody of the 

arrangement is then fixed by law and can only be changed by another 

There are many variations of custody arrangements. One of the more c

for two parents to have “joint” or “shared” legal custody with physical 

parent. This means that both parents have equal parental status, right

the eyes of the law, but the children live with the parent who has physi

to as the “custodial parent.” In such an arrangement, the parent wit

the “noncustodial parent” will typically have visitation on a regular b

children maintain a good relationship with the noncustodial parent, an

parent has expressed a willingness to care for the children in his home sh

a custodial parent living with AIDS who becomes unable to care for he

modify the custody order to transfer physical custody to the other p

require that a motion to modify the prior custody order contain an expl

Chpt 18 1-17-03.p65 1384
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

children. Even if a parent living with AIDS has successfully appointed a 

and that proxy has physical custody of the children at the time of the p

specifies who the parent wishes to have permanent custody of her 

important for a number of reasons. First and foremost, some parents m

guardian who is different from the standby guardian proxy. For examp

close friend and neighbor to serve as the standby guardian proxy, s

continue to attend the same schools and programs during any pe

hospitalized or incapacitated. Such an arrangement also facilitates th

parenting” envisioned by the standby guardianship laws, as the disab

and able to communicate her parenting preferences and concerns to th

The same parent, however, may have an entirely different wish for h

event of her death. Upon her death, she may express a desire that th

close relative, perhaps an aunt or a grandparent, who lives farther away

make sure that her will clearly expresses this desire.

Although there is no requirement that a person disclose the conten

before death, it is wise to consider a frank discussion with a proposed 

Certainly, it is best if a person who is in line to become the permanent 

children is aware of the situation beforehand. Moreover, if the parent a

her testamentary guardian from a relative, it is a good idea to prepare th

for the possibility of such a challenge in advance.

It is very important to note that naming someone in the will as a testa

dispositive of the issue. The question of who will become a child’s perm

death of a custodial parent must be finally determined by a probate or 

State where the child resides. The person who is named as the testam

file a petition seeking permanent guardianship and attach the relevant 

will to the petition as evidence of the parent’s intent for the child(ren). 

strates an ability and willingness to care for the child, and meets the St

cally the petitioner must be of a minimum age and not possess a cri

indicate the inability to responsibly care for a minor), she will be app

permanent guardian.

It may be the case, however, that other interested family members will p

permanent guardianship, even though they were not named as guard

overwhelming majority of states, when parents are deceased, the 

grandparents as the nearest living relatives or “next of kin” and will tak

from a grandparent seeking permanent guardianship even if the petition

named as the testamentary guardian by the deceased parent. For adva

parent living with HIV should work with an attorney to prepare affidav

choice of guardian if she is concerned that her children’s grandparents, o

that have standing, will seek guardianship despite her clearly expressed 

Chpt 18 1-17-03.p65 1385
386 U.S. Department of Health and Human Services • Health Resources and Services Administ

In discussing financial and legal planning issues, it is important to be

considerably from State to State. Although many of the legal plannin

are available to people residing in every U.S. State, requirements for ut

to vary. Also, court cases interpreting those laws may lead to diff

conclusions in different States. For these reasons, it is strongly recomm

with HIV consult with an attorney in the State where they reside if the

will, appoint a health care proxy for themselves or a standby guardian f

any of the other legal steps suggested in this chapter. Similarly, entitleme

are administered differently from State to State, and it is advisable to 

State familiar with these programs.

Chpt 18 1-17-03.p65 1386
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

Kathleen M Foley MD, Felicity Aulino, and Jan Stjernsward, M

OVERVIEW

“Nothing would have a greater impact on the care of p

advanced incurable disease than instituting the knowl

now to improve their quality of life.”

J

■ Over 60 million men, women and children have been infected with H

22 million people have died of AIDS. AIDS is now the primary cause of 

tion efforts initially dominated the public health agenda as the most 

ducing morbidity and mortality. Currently, however, attention to the 

ment is increasing, allowing for the integration of these approaches int

and priorities.2, 3, 4, 5

There is an urgent need to extend the benefits of disease-specific ther

HIV/AIDS in developing countries. This includes antiretroviral therap

laxis and treatment of opportunistic infections. Increased availability 

not only have a positive impact on survival; such treatment should als

tive care goals of pain and symptom management and improved qual

specific therapies in HIV/AIDS should have desirable effects on, and go 

tional care for, the palliation of suffering. As efforts to provide HIV

source-poor countries continue, there remains a critical need to provi

large numbers of HIV-infected persons in these countries who may o

anti-retroviral and other new therapies.

Palliative care is crucial in every care setting, rich or poor, for it is a 

centers on improving quality of life for patients and their families. I

attention on the need to integrate palliative care into national governm

address the pandemic in resource-poor settings, which includes many 

low-income areas in some industrialized countries.

Chpt 19 1-17-03.p65 1387
388 U.S. Department of Health and Human Services • Health Resources and Services Administ

curative treatment. Control of pain, of other symptoms, and of 

cial and spiritual problems is paramount. The goal of palliative 

ment of the best possible quality of life for patients and their f

pects of palliative care are applicable earlier in the course of 

junction with [other] treatment. Palliative care:

• Affirms life and regards dying as a normal process

• Neither hastens nor postpones death

• Provides relief from pain and other distressing symptoms

• Integrates the psychological and spiritual aspects of patien

• Offers a support system to help patients live as actively as p

• Offers a support system to help the family cope during the p

in their own bereavement

WHO recently updated this definition to reflect the full scope of palliati

approach which improves quality of life of patients and their familie

illness through the prevention and relief of suffering by means of 

impeccable assessment and treatment of pain and other problems, ph

spiritual.”7

In this chapter, the term “palliative care” refers to a philosophy of care 

symptom control, and supportive therapies for adult and child patient

Both WHO and the Joint United Nations Programme on AIDS (UNAID

an Essential Activity for Care and Support.”8 These two UN agencies 

International Development (USAID), the development agency of the U

ize palliative care as a fully integrated component of a care system t

quality of life by ensuring symptom control and supportive therapies c

with disease-specific therapies. The provision of palliative care is also 

framework of integrated community- and home-based care.

Palliative Care Services in Industrialized and Developing 

Palliative care services need to be integrated and balanced with o

dress the needs of patients and their families. Symptom control and 

necessary throughout a patient’s illness, although the proportion of pa

ies with the patients’ trajectory of illness and the setting in which th

ample, in developing countries, where many patients with cancer an

treatment when they are already in a far advanced stage of disease, p

major form of therapy provided to control a patient’s symptoms, suppo

address their psychological, cultural and existential distress, and ser

vention. In settings with early diagnosis where disease-specific therap

tive care services will support such therapies, increasing as needed alo

For many people with HIV/AIDS, the lack of available disease-specific 

Chpt 19 1-17-03.p65 1388
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

Model 3: Proposed Allocation of Healthcare Resources in Develo

In this model of care, a greater proportion of healthcare resources 

care as patients typically present with advanced disease and diseas

often not available or appropriate.

Model 2: Proposed Allocation of Healthcare Resources in Develo

In this model of care, a portion of healthcare resources is devoted to p

care beginning at initial diagnosis. The proportion of resources for p

as disease progresses and/or as needed.

Source: Adapted from World Health Organization. Cancer Pain Relief and Palliative 

No. 804. Geneva: WHO, 1990.

Model 1: Former Allocation of Healthcare Resources

In this model of care, all available resources are used exclusively for 

treatment, regardless of efficacy or concurrent needs, limiting patie

therapy to the last days of life.

Chpt 19 1-17-03.p65 1389
390 U.S. Department of Health and Human Services • Health Resources and Services Administ

disease-specific therapies as an either/or phenomenon. The more mode

ate approach is to view active disease-specific therapies and palliative ca

in which patient needs and available resources determine the prioritiza

care strategies. Attention must also be given to how the available resou

uted to the largest population in a cost-effective and efficient system of 

Barriers to Implementing Palliative Care in Resource-Poo

Numerous reports have outlined the major barriers in resource-poo

ing the key elements of HIV/AIDS care and support.9, 10 These barriers r

tions posed by scarce monetary, nutritional, and human resources to t

AIDS care in national health budgets. Medical, religious, gender, soc

also exist—including the social- and self-stigmatization of HIV/AIDS—

practices that impede the implementation of prevention and care poli

People with HIV/AIDS often suffer significant psychosocial distress re

of serious life-threatening illness at an early age, social ostracism asso

and the common and concurrent organic mental disorders caused by 

also suffer significant physical distress due to complications of oppo

tumors, which may include major symptoms such as pain, nausea and 

nia, anxiety, depression, and delirium.11 In addition, major environmen

tors may add barriers to providing HIV/AIDS care and treatment; fo

living with HIV/AIDS in the developing world reside in rural areas far 

resources.

An estimated 50% to 60% of people with HIV/AIDS worldwide have no 

fessionals to address their medical needs. In Uganda, for instance, 88

more than 10 kilometers from any kind of health facility, and many of th

personnel and the most basic medical supplies and medications.12 This 

occurs in a setting where many people are also deprived of the most 

water, housing, and income.

WHO and UNAIDS have summarized major barriers to implementing 

HIV/AIDS care and support: 8

• Low priority of financial support to the health sector nationally 

• Low priority of HIV care within national health budgets

• Globalization policies that prohibit a strong emphasis on HIV c

• Lack of investments in building infrastructure

• Serious managerial weaknesses at all levels of the health secto

• Insufficient remuneration and support for care professionals

• Loss of staff due to high HIV-related mortality and morbidity

Chpt 19 1-17-03.p65 1390
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

g g pp

HIV/AIDS

A NATIONAL PUBLIC HEALTH APPROACH TO PALLIAT

■ Although it is far beyond the scope of this chapter to address ways o

ers, we can offer some models for providing palliative care in developin

appear to be overwhelming odds, several model programs suggest that 

be provided and that palliative care services can readily be instituted 

however, a national strategy is needed to implement these models effe

WHO endorses a national program strategy that requires an initial th

proving palliative care.4

 The foundation measures for this public heal

1. Governmental policy: adoption of a national palliative care poli

2. Education: training of healthcare professionals and the public

3. Drug availability: assuring availability of drugs for pain control 

symptom management

Figure 19-2 provides a schematic representation of this three-pronged 

cussed in the following sections. All three of these foundation measure

along with committed leadership, to achieve an effective national pro

Figure 19-2: Foundation Measures Necessary for an Effect

Source: Adapted from Stjernsward J, Pampallona S. Palliative medicine—a global p

GWC, MacDonald N, eds. Oxford Textbook of Palliative Medicine, 2nd ed. Oxford: Oxfo

Chpt 19 1-17-03.p65 1391
392 U.S. Department of Health and Human Services • Health Resources and Services Administ

care offers the most rational and effective means of improving the qual

number of patients and families, even where resources are severely lim

STEP 1:

GOVERNMENTAL POLICY

Adoption of a National Palliative Care Policy

Establishment of a national policy for palliative care is the best wa

dards, funding, and accessibility of adequate care for the greatest num

lies. A national policy serves as the official recognition of a commitme

can play a major role in facilitating the availability of essential drugs, 

educational initiatives for healthcare professionals and the public alik

Numerous governments have already adopted a national palliative care 

lia, Canada, Spain, Uganda and the United Kingdom. 4

A national policy should set priorities that address access to palliative c

settings, including hospitals, clinics, and home-based care. Palliative c

in both urban centers and rural areas as an integral part of the esse

services that people can expect. These palliative care services should 

ported by healthcare professionals. Government budgets should approp

for essential drugs and provide medications and services ranging from 

counseling programs.

A number of resources exist to aid the development of a national healt

Cancer Control Programs: Policies and Managerial Guidelines can b

development of specific policies, as well as national palliative care a

general.15

To integrate palliative care into a national healthcare policy, governme

• Palliative care programs are incorporated into their existing he

• Healthcare workers are adequately trained in palliative care 

AIDS-related pain

• National health policies are revised so that equitable support is 

including home-based palliative care

• Hospitals are able to offer appropriate back-up and support for 

• Both opioid and nonopioid analgesics, particularly morphine fo

are available

Establishment of a national program, in which national healthcare p

clude the following activities: 15

• Identification and consideration of the capacities of existing he

Chpt 19 1-17-03.p65 1392
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

• Identification of resources

• Development of a communication strategy

• Preparation of a draft national plan

• Drawing up a budget for palliative care

• Organization of a national conference

• Changing legislation if needed

• Launching the program with workshops

The functions of an established national program to provide palliative 

• Recommend legislative action

• Recommend priorities for the investment of additional resourc

• Encourage the systematic development and coordination of s

activities to ensure the best use of available resources for the w

• Forecast future trends and coordinate the strategic developme

health systems such as quality assurance systems, and training 

professionals

• Develop and support palliative care programs for smaller popula

within the area it covers

• Coordinate the work of all agencies that can contribute to palli

UNAIDS has developed a four-guide series for the strategic planning p

sponse to HIV/AIDS, including situation analysis, response analysis, st

and resource mobilization.16 The Canadian Palliative Care Associatio

on Standardized Principles and Practice of Palliative Care present

committees to follow in developing palliative care standards; it is a 

process, with sample goals, objectives, essential steps, accompanying 

and desirable outcomes (see also http://www.cpca.net).17

Integrated Community- and Home-based Care Policy

In order to make services sustainable, the national policy should all

based care as well as to in-patient palliative care services and outpatient 

national HIV/AIDS palliative care programs that focus attention on int

home-based care are seen as the most efficient and cost-effective approa

Throughout Africa, model programs are demonstrating the beneficia

community- and home-based care for people with HIV/AIDS.18 For e

Hospice in KwaZulu-Natal, South Africa, developed an integrated ca

tients with HIV/AIDS are referred to teams of nurses and trained co

care for them in their own homes.19 The program has halved average 

hospital, and extended care provided at home costs less than a 2-day s

Chpt 19 1-17-03.p65 1393
394 U.S. Department of Health and Human Services • Health Resources and Services Administ

care to the formal care system of hospitals and clinics, empowering co

with the burden of disease as well as to decrease incidence and sti

community-based home care model is depicted in Figure 19-3.

Figure 19-3: An Introduction to the Integrated Community-Bas

(Hospice Association of South Africa)

Source: HASA. An Introduction to the Integrated Community-Based Home Care Mo

tion of South Africa, 2001. Videotape produced by ASI, email: magweni@kindsley.co.z

from the South Coast Hospice, South Africa.

Hospice Uganda promotes similar work through its government-supp

hospice program, providing home care and serving as a resource cen

healthcare professional training, public education, and advocacy for h

Chpt 19 1-17-03.p65 1394
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

Training Healthcare Workers

Education of healthcare professionals is crucial for the disseminatio

existing palliative care knowledge. Training programs should exist fo

dents, practicing physicians, nurses, pharmacists, social workers, pa

home-care workers, and rural health workers. Successful experiences 

cate that palliative care education can be incorporated into existing he

programs.23, 24, 25 Distance learning and certification programs deve

healthcare workers will further increase education coverage. Educatio

the situation in which they are performing their activities.

Training in palliative care focuses on six major skill sets:

1. Communication

2. Decisionmaking

3. Management of complications of treatment and the disease

4. Symptom control

5. Psychosocial care of patient and family

6. Care of the dying

WHO recommends that multi-dimensional education include at least a 

three important areas:6

1. Attitudes, beliefs and values:

• The philosophy and ethics of palliative care

• Personal attitudes towards HIV/AIDS, pain, dying, death, and b

• Illness as a complex state with physical, psychological, social,

and spiritual dimensions

• Multi-professional team-work

• The family as the unit of care

2. Knowledge base:

• Principles of effective communication

• Pathophysiology of the common symptoms of advanced disease

• Assessment and management of pain and other symptoms

• Psychological and spiritual needs of seriously ill and dying pat

• Treatment of emotional and spiritual distress

• Psychological needs of the family and other key people

Chpt 19 1-17-03.p65 1395
396 U.S. Department of Health and Human Services • Health Resources and Services Administ

pp

• Goal-setting in physical, psychological, social and spiritual dim

• Development of a family care plan

• Monitoring of pain and symptom management

Various programs in resource-poor settings for the training of health

illustrated how the above-mentioned program components can be impl

a model program for medical student training with a Diploma in Pa

University of Cape Town. With no palliative medicine journals, minimal 

graduate training, and very few palliative care physicians in the count

ning to develop a standardized knowledge base within a group of educ

also trains professional nurses in palliative care at nine campuses in S

The Mildmay Centre for AIDS palliative care in Uganda provides specia

care and rehabilitation, using a train-the-trainer approach to dissemin

losophy of symptom control throughout sub-Saharan Africa.11, 26, 27

Educating Family and Volunteer Caregivers

In developing countries, empowerment of family members and volun

liative caregivers may be the most realistic approach for meaningfu

rural areas. Experts emphasize that home care should not become a ve

ery at home: it should rather “encompass personal care, personal ser

ship, and applied medical care,” as reflected in education and trainin

caregivers is available through hospices and other care-giving bodie

South Africa, for example, runs intensive trainings for community volun

professional teams to provide care in home-based settings.

Educating Traditional Healers

In developing countries, traditional healers are a potential professi

semination of palliative care knowledge. Government-sponsored educa

sought to increase coverage areas of effective palliative care and symp

Mozambique, Zimbabwe, Uganda, and South Africa. For example, in K

rica, the AIDS Foundation’s collaboration with traditional healers resu

lum to increase the impact of AIDS prevention, education and manage

Resources for Education

WHO’s Cancer and Palliative Care Unit developed a series of mon

principles and practice of palliative care for both child and adult canc

adapted for National AIDS Programs. These include publications on c

lines for opioid availability, symptom relief in terminal illness, and pa

all suitable for professional education in palliative care for HIV/AIDS.

Chpt 19 1-17-03.p65 1396
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

• The Oxford Textbook of Palliative Medicine is a useful compre

book with chapters devoted to AIDS and various cultural settin

• A Canadian training module is available, devoted exclusively to 

disease.33

• The International Association for the Study of Pain published 

professional education in pain.34

• Guides for the use of analgesics also exist and should be widely 

Pediatric clinicians. In the arena of pediatric palliative care educatio

tric and Family HIV Resource Center (NPHRC), a non-profit education

educating professionals who care for children and families 

(www.pedhivaids.org).39 NPHRC’s François-Xavier Bagnoud Internatio

ing Program has trained nearly 120 doctors, nurses, social workers, and 

sionals from around the world in the care of children with HIV/AIDS (

Nurses and midwives. Training resources are available specifically 

that are particularly useful in resource-poor settings.

• The International Society of Nurses in Cancer Care has a core c

nursing care.41

• A train-the-trainer course similar to EPEC for nurses, End of Lif

Consortium (ELNEC) Project, consists of nine content modules 

(www.aacn.nche.edu/elnec).42

• WHO created a series of 13 fact sheets for nurses and midwives

on palliative care—with general key issues, challenges and de

care-provision issues (see www.who.in/HIV_AIDS/Nursesmidw

WHO encourages programs to disseminate these documents, ad

or adapting the information to fit specific contexts.

Public Education

Palliative care education needs to be made available at the family, 

levels. Patients, families and caregivers need good information regard

control, options for care and how care can be provided. Community an

lators and other community members, as well as government officials, 

need information about the essential components of palliative care 

provided to allow them to be effective supporters and advocates of pa

community and national levels.

There is a major need for public education campaigns to facilitate com

ness of the nature of HIV disease and to provide them with information an

care options when disease-specific therapies are unavailable or no l

Chpt 19 1-17-03.p65 1397
398 U.S. Department of Health and Human Services • Health Resources and Services Administ

• There is no need for patients to suffer prolonged and intolera

tressing symptoms.

• Treatments exist that can relieve pain and many other symptom

• Drug therapy is vital to pain management.

• Drugs for pain relief can be taken indefinitely without losing th

• Psychological dependence (“addiction”) does not occur when 

relieve pain.

• The medical use of morphine does not lead to abuse.

Public palliative care education need not be AIDS-specific. It must be 

sensitive manner that is accessible to every segment of the population. 

effective in promoting awareness of palliative care issues, as can reso

community participation in care. Where illiteracy precludes written edu

and theater are possible dissemination options. In settings where wr

cally unavailable and radio is a common method of communicating 

campaigns would be appropriate. “Scribes” or literate members of vo

participate in education efforts.12 All arenas of public education shou

ation to stigma reduction. Distance learning and certificate programs 

in the community can further advance education efforts.

STEP 3:

A NATIONAL POLICY FOR DRUG AVAILABILITY

A national palliative care strategy should include basic directive

necessary legislation and the administration process for drugs essent

ment of people with HIV/AIDS. To provide appropriate symptom contro

a national palliative care program must include policy measures regar

range of drugs to effectively address and control opportunistic infecti

toms that patients with HIV/AIDS report, including pain, nausea and 

agitation, insomnia, fatigue, depression and anxiety. Such national po

that address the importation and distribution of needed supplies, and a

priate amount of drugs to be imported and distributed.

Particular attention should be given to pain management. Numerous s

than 80% of HIV/AIDS patients with advanced illness have significant 

both under-assessed and under-treated. In a recent study in Uganda, 

that pain was the first major source of distress for both cancer and 

relatives.20 An excellent resource for the necessary legislative and ad

pain medications is the Guide To Opioid Availability, published in the 

Pain Relief.

30 This document can help governments focus attention o

policy for drug availability for palliative care drugs, particularly opioid

Chpt 19 1-17-03.p65 1398
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

tions in that country. This assures that decisions regarding resource 

medical needs of the majority of the population.)

Other chapters in this book describe a wide range of drug regimens fo

patients with HIV/AIDS.28 These drugs, preferably in their generic form 

be incorporated into Essential Drug Lists. Essential Drug Lists should 

for patients’ palliative care needs, such as non-opioids, opioids, and 

Table 19-1: Basic Drug List for HIV/AIDS Palliative Care

Analgesics Basic Drugs 

Nonopioid analgesics

(mild pain)

Opioid analgesics

(mild-to-moderate pain)

Opioid analgesics

(moderate-to-severe pain)

Opioid antagonists

-Acetylsalicylic Acid (ASA)

-Paracetamol

-Ibuprofen

-Indomethacin

-Codeine

-Morphine

-Naloxone

-Cho

 tris

-Difl

-Nap

-Dic

-Cel

-Rof

-Dih

-Hyd

-Oxy

-Tra

-Hyd

-Oxy

-Fen

-Met

-Bup

-Pet

-Nal

Adjuvant Drugs for

Analgesia and

Symptom Control Basic Drugs 

-Met

-Ond

-Bra

-Bis

-Dan

-Sor

-Prochlorperazine

-Senna

-Sodium docusate

-Mineral oil

-Lactulose

-Magnesium hydroxide

Antiemetics

Laxatives

Chpt 19 1-17-03.p65 1399
400 U.S. Department of Health and Human Services • Health Resources and Services Administ

based on the WHO three-step analgesic ladder. A model Essential Dru

can be easily adapted for patients with HIV/AIDS but should also includ

the treatment of opportunistic infections and their serious side e

neuroleptics and anti-convulsants, as illustrated in Table 19-1.

National drug policy should address the handling of medications. A mo

Uganda’s Guidelines for Handling Class A Drugs.

44 WHO has suggest

for guidelines that regulate health professionals who dispense opioid 

1. Legal authority. Physicians, nurses and pharmacists should be 

prescribe, dispense and administer opioids to patients in accord

2. Accountability. They must dispense opioids for medical purpo

held responsible in law if they dispense them for non-medical p

3. Prescriptions. A prescription for opioids should contain at leas

information:

• Patient’s name and address

• Date of issue

• Drug name, dosage strength and form, quantity prescribed

• Directions for use

• Physician’s name and business address

• Physician’s signature

-Par

 of 

-Im

-Par

-Val

-Me

-Pem

-Pre

-Clo

-Loperamide

-Diphenoxylate HCI/

 atropine sulfate

-Amitriptyline

-Gabapentin

-Carbamazepine

-Hydroxyzine

-Chlorpromazine

-Haloperidol

-Methylphenidate

-Dexamethasone

-Prednisone

-Diazepam

-Lorazepam

-Midazolam

(See treatment chapters)

Antidiarrheal agents

Antidepressants

(adjuvant analgesics)

Anticonvulsants

(adjuvant analgesics)

Antihistamines

Antipsychotics

Psychostimulants

Corticosteroids

Benzodiazapines

Antibiotics and

Antivirals

for prophylaxis

Chpt 19 1-17-03.p65 1400
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

6. Dependence. Physical dependence, which may develop when op

chronic pain, should not be confused with psychological depen

Financing must be secured for essential drugs. In Latin America, th

tion” Initiative is using a strategy of partnership among neighboring c

powerful advocates for cheaper medications, particularly AIDS drugs. 

a revolving fund for financing essential drugs, with countries joining to

and maintain commitment to buy and distribute them. In India, the pr

diate-release morphine has aided the distribution and affordability of 

cooperation of the pharmaceutical industry is needed to spread this p

Drug availability must include medications appropriate for pain reli

regardless of the availability of other types of treatment. Access to pa

always be essential, whether or not people have had access to other the

1997, the UNAIDS HIV Drug Access Initiative (DAI) was developed to 

resource-poor areas. Until 1999, DAI focused exclusively on ART, but 

other means of treatment—including palliative care (see www.unaids

MODEL INITIATIVES TO ADVANCE PALLIATIVE CARE

IN RESOURCE-POOR SETTINGS

Palliative Care in Uganda

The Ugandan Ministry of Health included palliative care as an inte

Clinical Care in its National Health Sector Strategic Plan 2000/01–20

tails the palliative care component of the Ministry of Health’s mand

care. Palliative care is in the core budget of the minimum healthcare p

implementation and verification. Uganda has an essential drug prog

restrictive drug laws now allows for trained palliative care nurses to p

oral morphine in home-based settings.

The program has developed a broad public education policy for AIDS t

education in palliative care at all healthcare levels. The government su

as a resource and training center for community- and home-based 

NGOs, including The AIDS Support Organization (TASO), provide coun

services, further increasing the reach of palliative care in underserved 

ship for Home-Based Care in Rural Areas and the Mildmay Center for 

in Kampala have been cited in UNAIDS’ Best Practice Collection.27

The Enhancing Care Initiative

The Enhancing Care Initiative is a collaborative effort of the Harv

AIDS Care Teams in Brazil, Puerto Rico, Senegal, South Africa and Th

initiative is to implement continuity of care programs in 10 care areas. T

approaches with HIV counseling and testing, basic medical care servic

Chpt 19 1-17-03.p65 1401
402 U.S. Department of Health and Human Services • Health Resources and Services Administ

care with care for the dying and care for caregivers. All 10 care areas 

sional educational programs. Each team has developed a unique ap

needs, working to integrate a comprehensive AIDS care program into eve

system, including communities and families (Available at www.eci.har

WHO: A Community Health Approach to Palliative Care fo

and Cancer Patients in Five African Countries

WHO is developing a Community Health Approach to Palliative C

Patients in five African countries (See Table 19-3 for prevalency rat

tries).51 The program is unique in combining policy advocacy for both A

within a national healthcare program. Each participating country is a

grate palliative care initiatives into their national health policies. The p

are to foster national policies in palliative care, provide public and p

Source: Reprinted with permission from Ministry of Health, Republic of Uganda. National Sector S

Accessibility of

palliative care

for chronically

and terminally

ill persons

increased

1. Proportion of

patients

receiving

palliative care

2. Number of

health

providers

trained in

palliative care

1. Field visits,

feedback from

communities,

district and

health facility

reports

2. Training reports,

performance

appraisal reports

1. Carry ou

provide

2. Provide 

care at 

3. Integra

curricul

4. Provide 

districts

Table 19-3: Countries Involved in the WHO Community Hea

to Palliative Care for HIV and Cancer Patients i

Life Exectancy

Country Population at Birth Cancer 

Adu

Millions (years) 1999 Incidence Mortality prevale

2000 rate 

Ethiopia 62.9 42.4 64,657 39,920 10.6

Tanzania 35.1 45.0 33,409 21,002 8.0

Uganda 23.3 42.1 17,058 10,504 8.3

Zimbabwe 12.6 40.4 13,030 8,648 25.0

Botswana 1.5 39.4 1,168 810 35.

Source: World Health Organization. A Community Health Approach to Palliative Care for HIV and 

Document, November 2001.

Chpt 19 1-17-03.p65 1402
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

The United States

The Ryan White Comprehensive AIDS Resources Emergency (CARE

of the US government funding healthcare and support services—inc

and hospice care—for underserved and resource-poor populations af

1999, the Health Resources and Services Administration (HRSA) awa

cally for palliative care through the Special Projects of National Signif

this legislation.54

As part of its development assistance, the U.S. government advocates p

Leadership and Investment for Fighting an Epidemic (LIFE) Initiative 

sion of palliative care in community-based treatment of HIV/AIDS and 

along with the innovative use of ART and TB prevention and care. US

Health and Human Services (HHS), and the Department of Defense 

million initiative by funding care and treatment improvements, primar

ity and infrastructure development in 13 target countries in Africa an

The United Kingdom

The National Health Service (NHS) of the UK supports hospice and 

services, including professional educational programs. This is an evolvi

working to provide better access to care and the development of care p

various diseases who can benefit from palliative care. Patients with A

range of other chronic illnesses are currently included in government-

programs. The program provides a seamless continuum of care from 

services to community- and home-based hospice programs.56, 57

RECOMMENDATIONS

■ Based on experience to date, the following recommendations may b

tive care in resource-poor settings.6

1. Governments should establish national policies and programs f

care.

2. Governments should ensure that HIV/AIDS-related pain relief a

grams are incorporated into their existing healthcare systems

care are neither necessary nor desirable.

3. Governments should ensure that healthcare workers (physician

or other professional groups appropriate to local needs) are 

palliative care and pain relief.

4. Governments should review their national health policies to 

support is provided for programs of palliative care in the home

Chpt 19 1-17-03.p65 1403
404 U.S. Department of Health and Human Services • Health Resources and Services Administ

support.

7. Governments should ensure the availability of both opioid and 

Further, they should make realistic determinations of their opi

ensure that annual estimates submitted to the International Na

reflect actual needs.

8. Governments should ensure that their drug legislation makes 

following:

• Regular review, with the aim of permitting importation, m

ing, stocking, dispensing and administration of opioids for 

• Legally empowering physicians, nurses, pharmacists and, w

categories of healthcare workers to prescribe, stock, disp

opioids

• Review of the controls governing opioid use, with a view to 

drugs are available in the necessary quantities for legitima

Chpt 19 1-17-03.p65 1404
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

1. United National General Assembly Special Session (UNGASS). Review of the pro

immunodeficiency virus/acquired immunodeficiency syndrome in all its aspects

General Assembly on HIV/AIDS: Report of the Secretary-General, 16 February 2

Available at www.un.org/ga/aids. Accessed May, 2002.

2. Barnett R, Whiteside A, Desmond C. The Social and Economic Impact of HIV/AI

A Review of Studies and Lessons. UNAIDS Draft, 30/05/00.

3. Osborne, CM HIV/AIDS in resource-poor settings: comprehensive care across a 

AIDS 10 (suppl 3):S61-7, 1996.

4. Stjernsward J, Pampallona S. Palliative medicine—a global perspective. In Doy

N, eds. Oxford Textbook of Palliative Medicine, 2nd ed. Oxford: Oxford Universi

5. Palliative care in the age of HIV/AIDS: Papers and recommendations from a US/

Royal Society of Medicine 94(9):427-98, 2001.

6. World Health Organization. Cancer Pain Relief and Palliative Care. Geneva: WH

7. Sepulveda C, personal correspondence, 2002.

8. World Health Organization/UNAIDS. Key Elements in HIV/AIDS Care and Supp

8 September 2000. Available from www.unaids.org/publications. Accessed Febru

9. Lurie P, Hintzen P, Lowe RA. Socioeconomic obstacles to HIV prevention and tre

countries: the roles of the International Monetary Fund and the World Bank. AID

10. Collins J, Rau B. AIDS in the Context of Development. UNRISD Programme on 

Development, Paper no. 4, December 2000. Available from www.unrisd.org. Acce

11. UNAIDS. AIDS: Palliative Care Technical Update. Geneva: UNAIDS, 2000.

12. UNAIDS Case Study. Caring for Caregivers. Geneva: UNAIDS, 2000.

13. Jones TT. Who Cares? AIDS Review 2001. South Africa: University of Pretoria, 20

14. Marais H. To the Edge: AIDS Review 2000. South Africa: University of Pretoria, 

15. World Health Organization. National Cancer Control Programmes: Policies and 

Geneva: WHO, 1995.

16. UNAIDS. Guide to the Strategic Planning Process for National Response to HIV

Available from www.unaids.org/publications/. Accessed February 2002.

17. Ferris FD, Cummings I, eds. Palliative Care: Towards Standardized Principles 

The Canadian Palliative Care Association, 1995. See also www.cpca.net. Accesse

18. Hardman M. Models of community-based HIV care. Southern African Journal o

19. Campbell L. Audit of Referral of AIDS Patients from Hospital to an Integrated C

Programme in Kwazulu-Natal, South Africa. The Southern African Journal of H

December 2001.

20. Diana Fund. Palliative Care Initiative. The Diana, Princess of Wales, Memorial 

Information, 2001.

21. HASA. An Introduction to the Integrated Community-Based Home Care Model 

Hospice Association of South Africa, 2001. Produced by ASI, email: magweni@k

22. Department of Health South Africa. South Coast Hospice’s Community Based H

HIV/AIDS and STD Directorate. Pretoria, South Africa: Department of Health, 1

Chpt 19 1-17-03.p65 1405
406 U.S. Department of Health and Human Services • Health Resources and Services Administ

26. Easterbrook P, Meadway J. The changing epidemiology of HIV infection: new cha

care. Journal of the Royal Society of Medicine 94(9):442-8, 2001.

27. UNAIDS. Summary Booklet of Best Practices Issue 2. Geneva: UNAIDS, 2000.

28. World Health Organization. Symptom Relief in Terminal Illness. Geneva: WHO, 

29. World Health Organization. Cancer Pain Relief and Palliative Care in Children

Monograph. Geneva: WHO, 1998.

30. World Health Organization. Guide to Opioid Availability. Annex to Cancer Pain R

Geneva: WHO, 1996.

31. American Medical Association. Education of Physicians in End-of-Life Care (E

Available from www.epec.net, May 2002.

32. Doyle D, Hanks GWC, MacDonald N, Eds. Oxford Textbook of Palliative Medicin

Oxford University Press, 1998.

33. Ferris FD, Flannery JS, McNeal HB, Morissette MR, Cameron R, Bally GA, eds. A 

the Care of Persons with HIV Disease, Module 4: Palliative Care. Toronto, Onta

and Casey House Hospice, 1995.

34. Fields HL, Ed. Task Force on Professional Education in Pain: Core Curriculum 

in Pain. Seattle, WA: International Association for the Study of Pain Publication

35. American Pain Society. Principles of Analgesic Use in the Treatment of Acute P

Pain: A Concise Guide to Medical Practice. Washington, D.C.: American Pain S

36. Librach LS. The Pain Manual, Canadian Cancer Society. Montreal: Pegasus He

37. Ligue Suisse Contre le Cancer. Vivre avec le Cancer, sans Douleur. Geneva: Ligu

1990 (Also Available in German and Italian).

38. Weissman DE, Burchman SL, Dinndorf PA, Dahl JL. Handbook for Cancer Pain 

Madison, WI: Wisconsin Cancer Pain Initiative, 1988.

39. National Pediatric and Family HIV Resource Center (NPHRC). www.pedhivaids

2002.

40. François-Xavier Bagnoud International Pediatric HIV Training Program. www.fx

Accessed December, 2002.

41. International Society of Nurses in Cancer Care. A core curriculum for a post bas

care. Palliative Medicine 4:261-70, 1990.

42. International Society of Nurses in Cancer Care. End-of-Life Nursing Education 

Project, Available from www.aacn.nche.edu/elnec, January 2002.

43. World Health Organization. 13 Fact Sheets, Available from www.who.in/HIV_AI

index.html. Accessed January 2002.

44. Ministry of Health, Republic of Uganda. Guidelines for Handling Class A Drugs

45. Stjernsward J, personal correspondence.

46. UNAIDS HIV Drug Access Initiative (DAI). www.unaids.org/. Accessed January 

47. Ministry of Health, Republic of Uganda. National Health Policy. Uganda, Septem

48. Ministry of Health, Republic of Uganda. National Sector Strategic Plan 2000/01

49. Merriman A. Hospice Uganda - A model palliative care initiative in Africa: an in

Merriman. Palliative Care for People Living with HIV/AIDS, a special edition of 

Care 4(3), May-June 2002. Available from: www2.edc.org/lastacts/intlpersp.asp

Chpt 19 1-17-03.p65 1406
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

53. The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act. Availa

Accessed January 2002.

54. O’Neill J, Marconi K. Underserved Populations, Resource Poor Settings, and HIV

Projects. Palliative Care for People Living with HIV/AIDS, a special edition of In

Care 4(3), May-June 2002. Available from: www2.edc.org/lastacts/intlpersp.asp

55. USAID Leadership and Investment for Fighting an Epidemic (LIFE) Initiative. 

www.synergyaids.com/sho/1383 and www.usaid.gov. Accessed April 2002.

56. Finlay I. UK strategies for palliative care. Journal of the Royal Society of Medic

57. NHS. The HNS Cancer Plan: a Plan for Investment, a Plan for Reform. Leeds: N

Chpt 19 1-17-03.p65 1407
Chpt 19 1-17-03.p65 1

408
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

INTRODUCTION

■ Major advances in highly active antiretroviral therapy (HAART) h

the nature and duration of HIV/AIDS caregiving in the United States. 

not yet discovered a drug combination that can completely eradicate t

regimens are helping many HIV-positive individuals live longer and enj

Marked declines in rates of opportunistic infections and deaths have b

can be managed as a chronic disease.

The populations that require HIV management also are changing. G

positive Americans are poor, marginalized, and uninsured or publicly ins

and Latinos now represent the majority of new AIDS cases and peopl

United States.2

 Women and youth are experiencing rapid rates of in

HIV incidence remains high among men who have sex with men (M

users, with young African American MSM experiencing particul

infections.3, 4

The changing demographics of the HIV epidemic, along with the growi

care, have created major challenges for the health professionals w

palliative care and the informal caregivers who provide emotional a

relatives and friends living with the disease. Although an estimated 

living with HIV infection are aware of their serostatus, only one-third are 

care.5, 6 For those who are in care, decisions must be made on whe

therapy, which drug combinations to use, and how to manage viral res

toxicities. Therapeutic regimens often must be adapted to meet the need

and patients with comorbidities, such as mental illness and chemical 

As treatment options have expanded, so have the stresses experien

prolongation of the disease course, uncertainty about overall prognos

pattern of repeated exacerbations and remissions in later stages of HIV 

the emotional and physical demands of caregiving. In-home caregive

asked to help patients manage sizable pill burdens, frequent and comp

and therapy-related side effects. Many of these caregivers face the a

inadequate housing, and lack of knowledge about available resource

HIV-positive. These developments underscore the importance of reco

needs of HIV/AIDS caregivers over the long term—both for their bene

of people in their care.

This chapter discusses the challenges of providing HIV/AIDS care and w

manage stress and maintain quality of life. The first section describes 

of HIV/AIDS caregiving. The next two sections examine the burdens a

and factors that contribute to burnout. The last two sections discuss 

Joseph F ONeill, MD, MPH, and Martha M McKinney

Chpt 20 1-17-03.p65 1409
410 U.S. Department of Health and Human Services • Health Resources and Services Administ

OVERVIEW OF HIV/AIDS CAREGIVING

■ Two types of caregivers provide clinical care and supportive serv

AIDS. Formal caregivers include health professionals, behavioral heal

workers who are trained and compensated for their caregiving activi

teers and spiritual counselors associated with AIDS service organizatio

hospice programs also fall in this definitional category. Informal car

spouses/partners, and friends who provide in-home care – usually on 

caregivers vary in the types of tasks performed, the amount of time de

living arrangements (i.e., same or separate household).

Prevalence of Informal Caregiving

More than 54 million people – 27% of the adult U.S. population – serv

for people with chronic illnesses or disabilities between August 1999 an

six percent of these caregivers were female, and 37 percent lived in th

care recipient. As compared to the total U.S. population, informal careg

have annual household incomes of less than $30,000 (43% vs. 35%).

No current data are available on the proportion of U.S. adults providin

with HIV/AIDS. However, telephone interviews conducted with a pr

adults between June 1990 and February 1991 found that three perc

percent of central-city residents were caring for HIV-positive relatives o

percent of these caregivers were female, and 22 percent were people o

were under age 40 (74%) and heterosexual (90%). Thirty percent h

comes of $20,000 or less.

Findings from the HIV Cost and Services Utilization Study (HCSUS), a n

sample of U.S. adults receiving medical care for HIV disease, indicate 

home nursing and supportive services during early 1996.9

 AIDS-diagnos

more likely to use home care services than people in earlier stages of d

the home care users with AIDS, 42 percent used unpaid (informal) ca

paid (formal) care only, and 23 percent used both types of care. The 

unpaid care were family members other than a spouse or partner (

While most AIDS-diagnosed individuals relied upon relatives and friend

tasks and personal care, 22 percent received in-home nursing services 

therapy, parenteral nutrition) from informal caregivers.

Economic Value of Informal Caregiving

Two studies offer important insights on the economic value of infor

study10 estimated the national economic value of all informal care provid

illnesses or disabilities during 1997. Using a midrange estimate of car

million), a national average of 17.9 hours per week spent on informal ca

Chpt 20 1-17-03.p65 1410
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

companionship) and 19 hours per week on housework. Based on th

services, the researchers estimated the annual per capita value of inform

Roles of Informal Caregivers

Informal caregivers perform a variety of roles that help people w

treatment regimens, avoid unnecessary hospital admissions, reduce relia

remain at home longer, and maintain quality of life. Traditionally, fam

as the primary caregivers for seriously ill individuals. Because HIV ca

social networks, many HIV-positive individuals have redefined family bou

friends, and other “chosen kin.” 12, 13

Findings from a 1997 national survey indicate that the typical care

20 hours per week to caregiving tasks.14 These tasks may include:

• Emotional support (e.g., comforting, empathizing, and providi

• Help with activities of daily living (e.g., feeding, bathing, dre

toileting)

• Help with instrumental activities of daily living (e.g., cleanin

running errands, providing transportation)

• Management of financial and legal matters

• Health care advocacy (e.g., linking the care recipient with fo

services, communicating with health professionals)

• Nursing care (e.g., dispensing medications and monitoring u

injections, inserting catheters)

Although informal caregivers increasingly are being asked to administe

age epidural catheters and home infusions, and provide wound care, re

examined their contributions to palliative care. Informal caregivers ca

in identifying and managing symptoms and side effects, yet most are th

little or no training.15

BURDENS AND REWARDS OF CAREGIVING

■ Psychologists use the term “caregiver burden” to describe the physi

and social problems associated with caregiving.16 Burden can be asses

or subjective impact. Objective burden assesses the extent to which 

routines and social relationships and negatively affects resources.17, 18 

changes in household routines, missed days of work, family frictions, 

loss of income, and/or reduced energy. Subjective burden assesses th

of and reactions to caregiving demands.17, 19 Caregivers with high lev

may report “feeling trapped,” “feeling nervous or depressed about 

the care recipient,” or “resenting caregiving tasks” even when th

relatively low.

Chpt 20 1-17-03.p65 1411
412 U.S. Department of Health and Human Services • Health Resources and Services Administ

caregiver and care recipient attempt to resolve issues of autonomy an

context of an increasingly asymmetrical relationship.22 Progressive enlar

role over the course of illness may require further adjustments in fam

mitments.23

The physical demands of informal caregiving also contribute to burden. 

the relatives and friends providing in-home care often are “on call” 

working this 24-hour shift, caregivers may be required to perform mult

flicting roles.25 Those who have never cared for a seriously ill person 

skills, often under extremely stressful circumstances. They must also f

plex medication schedules while meeting their own home and work ob

added burden of caring for entire families infected/affected by HIV dis

The emotional issues surrounding caregiving are a third source of burd

prevalent among people under age 40, the caregivers also tend to be 

non-normative experience of caring for someone with a terminal illness 

stress for these young adults.8

 For people of all ages, HIV/AIDS caregivi

strain of dealing with an unpredictable and currently incurable diseas

burdened by fears of contracting HIV even when they know there is 

Those who are already infected may worry that no one will be around to 

become ill.24 Adjusting to disease progression can be especially difficul

experienced multiple losses and the attenuation of social support netw

The financial impact of caregiving can be a major source of burden. Ma

economic hardships when a key wage earner is forced to reduce work 

ployment to care for a sick partner or relative.28 As bills accumulate

needs may go unmet. The loss of income also makes it difficult for ca

resources, such as home health and respite care, that could make their 

A final source of burden is the stigma surrounding HIV disease. Com

positive individuals because of their disease or the mode of transmiss

relatives and friends who provide care.28, 29 Rather than face stigmatiza

to conceal their caregiving activities by withdrawing from social rela

acknowledge their caregiving status may find it difficult to obtain supp

networks.8, 22

HIV-positive parents face additional challenges that increase their se

challenges include arranging for guardianship of the children, balancin

“healthy” family members, and helping their children cope with the 

crimination.25 If a child is HIV-positive, the mother’s guilt about tran

overwhelming.32 HIV-positive parents also may have unmet needs for 

ample, in one multi-city study, only 30 percent of the HIV-positive mother

Chpt 20 1-17-03.p65 1412
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

Many of the burdens experienced by formal and informal caregive

ample, fear of exposure is a major source of stress for some health p

caregivers may experience a lack of support from their families and pro

to concerns about contagion or “stigma by association.” 25, 37 They also 

caregiver’s emotional distress about not being able to “cure” the disea

The unpredictable course of HIV disease and the wide range of pote

create significant burden, particularly for clinicians with limited HIV m

While attempting to control chronic symptoms and conditions, clinicia

to treat episodes of acute illness and therapy-related side effects. Add

include repeated exposure to the death of young patients, ethical di

time to counsel and support informal caregivers.38, 39 Formal caregivers 

workplace-related stressors, such as work overload, unrealistic expe

accomplished, lack of decisionmaking autonomy, communication pro

and inadequate medical resources and referral arrangements.35, 40, 41

Consequences of Caregiver Burden

Caring for an individual with a chronic disease, such as HIV/AIDS, le

for self-care. The multiple tasks performed by caregivers may cause th

exercise, socialization, and sleep.42 One study of women caring for peo

tal disabilities found that caregivers with high levels of subjective burd

balanced diets, exercise, and participate in stress management and 

ties.18 Another study of women caring for HIV-positive relatives and f

two-thirds had experienced at least one chronic physical symptom.27 

caring for family members with HIV/AIDS documented high levels of p

and affective disorders.43

Caregiver burden often produces high levels of chronic stress. The 

distinguishes between two types of stress.20, 44 Primary stressors arise 

caregiving. These stressors may result from caregiving demands (i.e., 

caregiving activities), role overload, and/or the sense of being coerced 

ary stressors are influenced by the caregiving role but arise outside 

caregiving may adversely affect outside employment, exacerbate family 

social contacts.

Caregivers under stress exhibit a wide range of signs and symptoms (T

which caregivers experience these symptoms depends on their pers

health and energy levels, and coping skills.42 Additional factors affectin

stress include the severity of the care recipient’s illness, the duratio

accessibility of social support and financial resources.20, 27, 45

Chpt 20 1-17-03.p65 1413
414 U.S. Department of Health and Human Services • Health Resources and Services Administ

Rewards of Caregiving

Although studies of caregiving tend to focus on the “burden” of car

rewards. When asked about the positive aspects of providing HIV/AIDS 

cite opportunities to:

• Bring mission and purpose to one’s life25, 46

• Develop empathy and self-knowledge12, 37

• Gain a sense of personal effectiveness by demonstrating com

very difficult circumstances 25, 37

• Experience the positive feelings associated with loving, carin

needed24, 37

One study suggests that helping caregivers define the meaningful an

roles and become more attuned to “brief human moments” that cre

enhance both physical and psychological well-being. 24

 Change in eating patterns Loss of selfconfidence W

and self-esteem a

• Diarrhea • Loss of interest in and • L

commitment to work n

• Elevated blood pressure • Feelings of inadequacy, • D

helplessness, and guilt a

• Fatigue • Feelings of restlessness • I

o

• Gastrointestinal problems • Depression • T

• Headaches • Sense of being over- • I

whelmed or overloaded o

• Insomnia • Mood swings • D

a

• Muscle tension • Sense of failure • I

p

• Weight loss • Anxiety about the future • R

Chpt 20 1-17-03.p65 1414
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

Psychologists define burnout in terms of three components: 

depersonalization, and reduced personal accomplishment.47 Emotion

the basic stress dimension of burnout. This condition is characteri

emotionally overextended and lacking enough energy to face another 

represents the interpersonal dimension of burnout. Feeling drained an

develops an emotional buffer of detached concern and interacts with 

callous manner. Reduced personal accomplishment represents the self

burnout. This dimension is characterized by a growing sense of inadeq

self-imposed verdict of failure.

Factors Contributing to Caregiver Burnout

The literature on caregiving suggests that both individual a

increase the risk of burnout (Table 20-2). Empirical research suggest

are more strongly predictive of burnout than individual character

experiencing work overload and interpersonal conflict over an exte

particularly vulnerable to burnout.47

Table 20-2: Factors Contributing to Caregiver Burnout

Individual Situational

• Age (younger caregivers more

subject to burnout)

• High expectations of oneself

and others

• High levels of commitment,

dedication, and idealism

• The need to work hard

• The need to prove oneself

• Strong goal orientation

• Difficulty saying no

• Difficulty delegating

responsibility to others

• Propensity toward self-sacrifice

• Tendency to be a “giver” rather

than a “receiver”

• Role ambiguity (i.e

what the caregiver 

• Conflict between ro

• Work overload

• Job tension

• Interpersonal confl

family members, co

• Inadequate prepara

• Insufficient resourc

of caregiving

• Inadequate social s

• Lack of recognition 

functions performe

• Workplace-related f

work targets, lack o

autonomy, inadequa

arrangements)

Sources: References 25, 35, 48, 49. Sources: References 28, 47, 4

Chpt 20 1-17-03.p65 1415
416 U.S. Department of Health and Human Services • Health Resources and Services Administ

psychological, and behavioral problems listed in Table 20-1. Because b

caregivers tend to keep working until the downward spiral goes t

performance and well-being become unacceptably high.47

Care recipients suffer when burnout leads to lower-quality care. Ca

emotional exhaustion often become less sensitive to the care recipie

This “compassion fatigue” increases the likelihood that the care rec

treated in a detached, mechanical fashion; or even subjected to me

Burnout symptoms, such as decreased judgmental ability and difficulty 

it more difficult for caregivers to competently perform clinical roles. 

care recipients may be at increased risk for disrupted care or placem

facility.50, 52

The health care system is negatively affected when burnout depletes t

caregivers and creates a need for continual training of replacements. B

who remain in the system may require greater commitments of resour

mental health care.10 The health care system incurs additional costs w

members become too exhausted to provide in-home care and responsibil

providers.

PREVENTING AND MANAGING BURNOUT IN INFORM

■ Health professionals historically have been trained to focus o

relationship, with little attention to the needs of the informal caregiv

models encourage health professionals to develop “partnerships” with 

include periodic assessment of the caregiver and the patient.53 By a

levels of stress in informal caregivers, health professionals can more effec

to meet their needs.

Assessing Caregiver Burden

Some informal caregivers accompany HIV-positive patients to medic

be easily identified. If a patient’s sources of emotional and practical su

question should be asked when taking the family and social history. O

are identified, their level of perceived burden and the presence of aff

depression and anxiety, should be assessed.52 The availability, accessib

of social support resources also should be evaluated.32 Because caregiver 

over time, particularly among caregivers with the fewest personal and m

professionals should periodically reassess each caregiver’s problems a

The early detection of caregiver burden conserves resources by preven

visits for psychosomatic complaints.54 In many cases, health profession

of burden by asking just a few questions. Parks and Novielli offer the 

Chpt 20 1-17-03.p65 1416
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

yy py

time for yourself?

• Do you have any outside help?

• What do you do to relieve your stress and tension?

Information on caregiver stress and burden also can be obtained 

questionnaires. For example, the American Medical Association ha

self-assessment questionnaire for use in physician offices.53 This 

16 yes/no items and 2 global scale items designed to measure indices o

distress. Health professionals can use the caregiver’s total score or score

to assess the need for medical or counseling interventions and to 

community resources.

Counseling Caregivers

Information gained from the systematic assessment of caregive

professionals in a stronger position to help informal caregivers cope wit

be set aside during each medical appointment to discuss what is happ

and to give them a chance to express their feelings.32 In addition to serv

clinicians may be able to offer practical suggestions for eliminating or b

They also can help caregivers recognize and build on aspects of thei

physical, psychological, and social well-being.55

Caregivers of HIV-positive children require comprehensive assessme

and social support.32 One study of parents, relatives, and friends 

children31 identified six psychosocial needs:

1. Need to Maintain Physical Integrity

(i.e., desire to be knowledgeable about the modes of HIV tran

protecting the infected child from opportunistic infections)

2. Need to Learn

(i.e., desire to know the different roles of the health professionals w

to receive information on new HIV/AIDS treatments, to have th

honestly, and to learn how to deal with stress)

3. Need to Act According to a Set of Beliefs and Values

(i.e., desire to have health professionals respect them for doing wh

4. Need to Communicate

(i.e., desire to be kept informed on the condition of the child and t

feelings. Desire for greater support from their informal social n

5. Need to Feel Worthwhile and Useful

(i.e., desire to be supported by health professionals throughout th

Chpt 20 1-17-03.p65 1417
418 U.S. Department of Health and Human Services • Health Resources and Services Administ

spiritual counselors can help caregivers find comfort and peace even 

religious or philosophical belief systems.56 Caregivers with affective d

burden should be referred to mental health professionals for assessme

Health professionals sometimes overlook the importance of extend

bereavement period.57 If the relatives and friends providing care had 

the care recipient, grief may extend for two or more years after death.58 

can help caregivers mourn appropriately, cope with the changes resu

plan for the future. (See Chapter 16: Grief and Bereavement.)

Strategies for Counteracting Burnout and Promoting Self

The literature on caregiving describes a wide variety of strategies for 

burnout. Most of these strategies focus on ways of managing the ca

than on eliminating or reducing stressors in the caregiving environment

to reevaluate caregiving demands and resources, clarify values and pri

strategies that match the nature of the stressors. Anecdotal reports 

suggest that many of these strategies are effective; however, relative

conducted to assess actual outcomes.47 Six approaches to counteractin

self-care receive frequent mention in the literature:

1. Use Problem-Focused Strategies to Cope with Stress.

Research suggests that caregivers who use problem-focused strateg

situations are less likely to experience burnout than those wh

strategies.16, 41, 60 Problem-focused strategies include gathering inf

taking direct action. Emotion-focused strategies include efforts to e

emotional outbursts, and self-accusation. Health professionals of

caregivers’ risk for burnout by asking hypothetical questions about 

example, an emotion-focused response to the question, “When som

your partner’s care, how would you react?,” may signal a need for 

counseling.

Specific examples of problem-focused approaches to stress can help 

more active, engaged forms of coping. Books and web sites for care

suggestions: (See Table 20-3 for additional web sites.)

• Educate yourself about your care recipient’s condition. Try t

resource on HIV/AIDS and/or caregiving each week. Understan

and caregiving issues will make it easier to deal with day-to-day 

• Ask questions. When accompanying the care recipient to a me

be afraid to ask questions or to admit that you don’t understand 

sional is saying.61 Use a journal to note changes in the care recip

can confidently discuss these concerns during medical appointm

Chpt 20 1-17-03.p65 1418
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

• If your coping strategies are not working, seek professional 

counselor may be able to help you better understand your feelin

new ways of managing stress.48

2. Change Caregiving Patterns.

Informal caregivers sometimes get so involved with their work that 

and burn out quickly.28 This situation can be avoided by helpi

realistic goals based on an honest assessment of what they can and c

established, caregiving patterns can be changed by:

• Breaking down tasks into small acts of care64

• Learning how to adjust the pace of caregiving 65

• Asking others to help with caregiving tasks 61–63, 66

• Encouraging the care recipient to help with tasks and continue

self-care as long as possible 21

Caregivers with high levels of subjective burden should be remin

them to be perfect. A “level of care prescription” from the physicia

a better balance between caregiving responsibilities and their own ph

needs. One guide for caregivers offers the following advice:

Let go. No one person can do it all. Acknowledge that as a hum

just like everyone else. Allow others to help you; delegate re

asking for help and saying no once in awhile. Lower your ex

that things might not get done perfectly. . . . Prioritize tasks an

time.48

3. Adopt Relaxation Techniques.

Many caregivers use relaxation techniques to manage stress and 

techniques should fit with the individual caregiver’s interests, tim

caregivers may wish to learn yoga or tai chi, while others may prefe

music, or soak in a warm bath. Armstrong describes a visualiza

caregivers close their eyes and imagine a scene of beauty and tra

project themselves. She also suggests reserving ten minutes each d

The idea is to consolidate all worries into this period and then to set 

day. Additional relaxation techniques recommended by caregiv

deep-breathing exercises, massage therapy, gardening, exercising, 

with friends.

Chpt 20 1-17-03.p65 1419
420 U.S. Department of Health and Human Services • Health Resources and Services Administ

and provide a needed outlet for pent-up emotions. These progra

workouts, but significant health benefits also can be gained from just 

each day. One study of informal caregivers of HIV-positive m

that maintaining a regular exercise regimen, along with a spiritual f

coping strategy.67

Some caregivers react to stress by engaging in unhealthful behaviors s

and drug misuse. While these chemicals may provide a “quick fix

likely to increase anxiety and health problems – particularly amon

eating or sleeping properly. Caregivers should be informed of the 

behaviors and encouraged to participate in counseling and/or treatme

and complementary therapies, such as acupuncture, aromatherapy, a

also may help to relieve stress.

5. Maintain a Life outside the Caregiving Role.

Caregivers often respond to stress by becoming over-involved with 

constant demands of the job may cause caregivers to neglect friends

that once gave them pleasure. Health professionals should enco

regular breaks and to keep up with their interests and hobbies as b

caregivers, outside employment may provide relief from everyday ten

need to get away for a few hours. Health professionals can help ca

self-renewal process by linking them with social support resources

6. Build a Support Network.

Although U.S. cultural norms emphasize self-sufficiency,68 em

that caregivers with higher levels of social support are less likely 

outcomes.69 Social resources can provide emotional comfort and p

social isolation; and offer humor, recognition, and encouragement.47 T

source of new information and insights.59

Social support resources should be explored if the caregiver’s answe

suggest a need for outside assistance. Formal sources of social sup

• AIDS service organizations (provide supportive services su

programs, case management, emergency financial suppor

assistance, nutritional counseling, and transportation assistan

• Home health agencies (provide skilled nursing care, homem

services, and rehabilitation services)

• Home-delivered meal programs

• Hospice programs (provide in-home or residential palliative and 

for patients in the terminal stages of illness)

• Respite care programs (provide short-term, temporary nonmed

disabilities and chronic or terminal illnesses)

Chpt 20 1-17-03.p65 1420
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

needs and available resources.

Respite programs are provided by a variety of organizations, in

centers, hospitals, home health agencies, nursing homes, local 

schools, and faith communities. In some localities, the families o

illnesses have formed respite care exchange programs.65

The ARCH National Respite Network and Resource Center opera

service (http://www.chtop.com/locator.htm) to help caregivers 

providers in their states and communities. Contact information also 

AIDS service organizations, health departments, and United Way 

Studies of the impact of respite care have documented signifi

caregivers’ emotional well-being and perceived ability to cope, but 

short-lived without repeated use.42 Many family caregivers who cou

services never request this help because of fears that they w

responsibilities, that something will go wrong during the stay

longer feel needed if the temporary caregiver performs well.68 P

children may be particularly reluctant to use respite services bec

stigma associated with the mode of transmission.32 Discussions wit

and families who have used respite care may help informal c

these obstacles.

Informal sources of social support include:

• Family members, other relatives, and friends

• Other caregivers who are willing to rotate caregiving responsib

• Faith communities

• Caregiver support groups

Caregiver Support Groups

Support groups bring caregivers together to share feelings an

learn from one another. In contrast to group therapy, their purp

participants’ behaviors but to enhance decision-making capacity and 

Research suggests that support groups can significantly reduce care

they cannot substitute for professional counseling or therapy whe

needed. 42

One of the major benefits of support groups is to provide an o

cannot be expressed in the home.48 Support groups also provide 

• Become better informed about HIV/AIDS, new treatments

and community resources

• Share problems and brainstorm solutions

• Establish social contacts

• Lessen the sense of stigma associated with HIV care

• Obtain recognition for caregiving efforts

• Arrange respite care exchanges with other caregivers

To take advantage of these opportunities, the relatives and f

individuals must be willing to divulge their caregiving status – some

difficult to do in small, closely knit communities. They also must f

support group meetings, locate someone who can provide care 

make arrangements for transportation. Telephone support groups 

caregivers who wish to maintain anonymity or who cannot attend 

Chpt 20 1-17-03.p65 1421
422 U.S. Department of Health and Human Services • Health Resources and Services Administ

• Modes of HIV transmission

• Effects and side effects of medications

• Drug-taking schedules and strategies for improving adheren

• Basic information on nutrition

• Symptoms and problems to expect as the disease progresses

Informal caregivers also may benefit from instruction on infection co

management, and simple nursing techniques (e.g., administering injectio

ulcers).

As new treatments are discovered and standards of care change, info

receive ongoing education. Topics should be introduced slowly, over a

individuals under stress can process only small amounts of information 

extent possible, these topics should be explained in nonmedical terms

for caregivers to ask questions. The use of educationally and linguist

and written materials may help reinforce key concepts.

PREVENTING AND MANAGING BURNOUT IN FORMA

■ Counteracting burnout among formal caregivers requires a two-pro

tion to helping individual caregivers develop more effective coping strate

target policies and practices in the workplace that create or exacerbate s

can benefit from coping effectiveness training, but these techniques w

tive if the work environment is not supportive.47

Situational strategies attempt to reduce the incidence of burnout by 

worksite stressors. These strategies promote engagement with work 

involvement, and a sense of self-efficacy) by:

• Establishing clear job descriptions and good referral mecha

• Setting realistic work targets

• Restructuring jobs to make workloads more manageable

• Providing training on HIV management, new approaches to 

management, and effective ways of communicating with p

members

• Offering on-site health promotion programs

• Encouraging staff to participate in policy decisions that affe

• Providing regular time off and appropriate rewards

• Scheduling regular memorial services for staff wishing to re

lost patients

Conflict among formal caregivers can be prevented, or at least manage

forums for case discussion.40 Although these sessions reduce the time av

Chpt 20 1-17-03.p65 1422
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

CONCLUSION

■ Over the past decade, improved antiretroviral regimens, concerns ab

care, and consumer preferences have shifted HIV care from hospitals 

based settings.9, 71 This shift has placed heavy demands on the family an

individuals, many of whom have very little knowledge of HIV manageme

Formal caregivers also are faced with intense pressures as they struggle 

changing standards of HIV care.

Because informal caregivers experience varying types of burdens and h

financial resources and social support, strategies for counteracting bur

care must be tailored to their individual needs. Many of the strateg

caregiving literature assume that caregivers are middle-income, fa

surrounded by family and friends who are willing to help. As HIV con

and marginalized communities, new or modified approaches may be n

manage stress and maintain good physical and mental health. Thes

require family-centered case management and integrated primary ca

services for patients and caregivers.

Strategies for counteracting burnout among formal caregivers must 

and situational factors. Formal caregivers may be able to change the 

with stressors by developing a better understanding of their persona

strategies. However, their efforts will be only partially effective if negat

in the workplace remain unchanged. Finding ways to enhance the w

ultimately prove more effective in preventing burnout than teaching c

stress.

Advances in HIV antiretroviral therapy are changing but not necessarily 

of caregiving. Although HIV-positive individuals are living longer, many 

related side effects that require monitoring and management in the 

assessing the causes and levels of stress in informal caregivers, healt

education and counseling that is more responsive to individual needs.

Chpt 20 1-17-03.p65 1423
424 U.S. Department of Health and Human Services • Health Resources and Services Administ

Major Features Caregiver.com CaregiverZone Caregiving.com Empoweri

& Resources www.caregiver.com www.caregiverzone.com www.caregiving.com www.car

Table 20-3: Helpful Web Sites for Caregivers Web site focus All diseases/age groups Elder care Elder care All diseas

Online articles and/or recommended readings !! !Bulletin board !! !Chat room ! Conferences and workshops

!

Expert consultationon caregiver issues ! !Newsletter !! !($)Other publications Magazine ($) Caregivers Handbook ($)Support groups

!

Other resources

Online store*

Resource locator service Educational packets ($) Journal exe

by city/state; online store healing circ

$ indicates a charge for the resource/service

Chpt 20 1-17-03.p65 1424
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

Web site focus Alzheimer’s disease and All diseases/age groups Grief support for all All diseases/age groups All dis

other cognitive disorders (Membership fee) diseases/age groups but sp

Online articles and/or recommended readings ! !!Bulletin board ! ! Chat room

!

(HIV-specific)

Conferences and workshops ! 

(New Jersey only) 

Expert consultationon caregiver issues

!

Newsletter ! !!Other publications Reports on HIV/AIDS Resource

family caregiving Directory ($)

Support groups

! Caregivers are matched E-mail support group for

for one-on-one family/friends of

support PLWH ($)

Major Features Family Caregiver Friends’ Health He

& Resources Alliance Connection GriefNet HealingWell.com Exch

www.caregiver.org www.48friend.com www.rivendell.org www.healingwell.com ww

Table 20-3: Helpful Web Sites for Caregivers (continued)

Chpt 20 1-17-03.p65 1425
426 U.S. Department of Health and Human Services • Health Resources and Services Administ

National Family Major Features Caregivers Association Queernet WebofCare.com Well Spou

& Resources www.nfcacares.org www.queernet.org www.webofcare.com www.we

Table 20-3: Helpful Web Sites for Caregivers (continued) Web site focus All diseases/age groups Gay, lesbian, bisexual, All diseases/age groups All diseas

and transgendered people (Memb

 Online articles and/or recommended readings ! ! Bulletin board

!

 Chat room !  Conferences and workshops Expert consultation ! ! Mentors 

 on caregiver issues new  Newsletter ! !

 Other publications

! Coping with Mainstay

Caregiver Worries ($) Spouse of the 

 Support groups On-line support group for Grief support groups Nation

HIV/AIDS caregivers of supp

Other resources Caregiver kits; Help with caregiving Lette

Chpt 20 1-17-03.p65 1426
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

1. O’Neill JF, Marconi K, Surapruik A, Blum N. Improving HIV/AIDS services throu

perspective. J Urban Health 77(2): 244-54, 2000.

2. Kaiser Family Foundation. The HIV/AIDS epidemic in the United States. June 2

Foundation Web Site. www.kff.org/content/2001/3029/USFactSheet.pdf. Access

3. CDC. HIV and AIDS - United States, 1981-2000. MMWR 50(21): 430-34, 2001.

4. McFarland W, Katz MH, Stoyanoff SR, et al. HIV incidence among young men wh

U.S. cities, 1994-2000. MMWR 50(21): 440-44, 2001.

5. Bozzette SA, Berry SH, Duan N, et al. The care of HIV-infected adults in the Uni

339(26): 1897-1904, 1998.

6. CDC. CDC guidelines for national human immunodeficiency virus case surveilla

human immunodeficiency virus infection and acquired immunodeficiency syndr

1999.

7. National Family Caregivers Association. 54 million Americans involved in family 

the previously reported figure. 13 October 2000. National Family Caregivers We

Accessed March 21, 2001.

8. Turner HA, Catania JA, Gagnon J. The prevalence of informal caregiving to pers

States: caregiver characteristics and their implications. Soc Sci Med 38(11): 15

9. London AS, Fleishman JA, Goldman DP, McCaffrey DF, Bozzette SA, Leibowitz A

home care services among people with HIV infection in the USA. AIDS Care 13(

10. Arno PS, Levine C, Memmott MM. The economic value of informal caregiving. H

11. Ward D, Brown M.A. Labor and cost in AIDS family caregiving. West J Nurs Res 

12. Carlisle C. The search for meaning in HIV and AIDS: The carers’ experience. Qu

2000.

13. Irving G, Bor R. Psychological distress among gay men supporting a lover or par

AIDS Care 7(5): 605-17, 1995.

14. Caldwell AM. Taking time out for the rest of your life. Quest 6(3): 1-6, 1999. Av

http://www.mdausa.org:80/publications/Quest/q63respite.html. Accessed March 

15. Glajchen M, Fraidin L. Caring for the caregivers. StopPain.Org at Beth Israel M

2(3): 1-4, 2001. Available at http://www.stoppain.org. Accessed March 26, 2001.

16. Pakenham KL, Dadds MR. Carers’ burden and adjustment to HIV. AIDS Care 7

17. Dwyer JW, Lee GR, Jankowski TB. Reciprocity, elder satisfaction, and caregiver 

exchange of aid in the family caregiving relationship. J Marriage Fam 56(1): 3

18. Sisk RJ. Caregiver burden and health promotion. Int J Nurs Stud 37(1): 37-43, 

19. Stull DE, Kosloski K, Kercher K. Caregiver burden and generic well-being: oppo

The Gerontologist 34(1): 88-94, 1994.

20. Pearlin LI, Aneshensel CS, LeBlanc AJ. The forms and mechanisms of stress pr

the case of AIDS caregivers. J Health Soc Behav 38(3): 223-36, 1997.

21. Brown MA, Powell-Cope, GM. Caring for a Loved One with AIDS: the Experien

and Friends. Seattle: University of Washington Press, 1992.

Chpt 20 1-17-03.p65 1427
428 U.S. Department of Health and Human Services • Health Resources and Services Administ

25. Hendrick J. The impact of HIV on caregivers. 19 June 2000. Canadian Psycholo

www.cpa.ca/phase/caregivers.pdf. Accessed March 28, 2001.

26. Folkman S, Chesney MA, Christopher-Richards A. Stress and coping in caregivi

Psychiatr Clin North Am 17(1): 35-53, 1994.

27. Wight RG, LeBlanc AJ, Aneshensel C. AIDS caregiving and health among midlif

Health Psychol 17(2): 130-7, 1998.

28. Armstrong S. Caring for Carers: Managing Stress in Those Who Care for Peopl

Geneva, Switzerland: UNAIDS, 2000. Available at: http://whqLibdoc.who.int/hq

Accessed March 21, 2001.

29. Wilder TL. Caring for the caregiver. Survival News March: 1-3, 2000. Available 

asp/mar00/caregiver.html. Accessed March 30, 2001.

30. Bor R. The family and HIV/AIDS. AIDS Care 2(4): 409-12, 1990.

31. Reidy M, Taggart ME. Psychosocial needs expressed by the natural caregivers o

AIDS Care 3(3): 331-43, 1991.

32. Hughes CB, Caliandro G. Effects of social support, stress, and level of illness on 

AIDS. J Pediatr Nurs 11(6): 347-57, 1996.

33. Schable B, Diaz T, Chu SY, Caldwell MB, Conti L, Alston OM, et al. Who are the 

children born to HIV-infected mothers? Results from a multistate surveillance p

511-5, 1995.

34. Mellins CA, Ehrhardt AA. Families affected by pediatric acquired immunodefic

stress and coping. J Dev Behav Pediatr 15(3): S54-60, 1994.

35. Bellani ML, Fulani F. Burnout and related factors among HIV/AIDS health care 

207-21, 1996.

36. Gueritault-Chalvin V, Demi A, Peterson JL, Kalichman SC. Work-related stress a

AIDS caregivers: test of a coping model with nurses providing AIDS care. AIDS 

37. Guinan JJ, McCallum LW, Painter L, Dykes J, Gold J. Stressors and rewards of b

support volunteer: a scale for use by care-givers for people with AIDS. AIDS Ca

38. Brewington JG. The AIDS epidemic: caring for caregivers. Nurs Admin Q 18(2

39. Slone M, Stephany T. Stressors of hospice home care nurses caring for AIDS pat

Am J Hosp Palliat Care 12(1): 32-6, 1995.

40. Block SD. Helping the clinician cope with death in the ICU. In: Randall CJ, Rub

Death in the ICU: The Transition from Cure to Comfort. New York: Oxford Unive

41. Kalichman SC, Gueritault-Chalvin V, Demi A. Sources of occupational stress an

nurses working in AIDS care. J Assoc Nurses AIDS Care 11(3): 31-7, 2000.

42. Turnbull JM, Turnbull SK, Kirk CC. Alleviating the stress of caring for patients w

Clin Rev Fall: 49-53, 1999. Available at http://primarycare.medscape.com/SMA/

archive/1999/toc-fall.html. Accessed March 30, 2001.

43. Land H, Hudson SM. Stress and well-being among Latina family AIDS caregiver

esteem. National Conference on Women and HIV, Pasadena, California (Abst 10

44. LeBlanc, AJ, London A, Aneshensel CS. The physical costs of AIDS caregiving. So

45. Oberst MT, Thomas SE, Gass KA, Ward SE. Caregiving demands and appraisal of 

caregivers. Cancer Nurs 12(4): 209-15, 1989.

Chpt 20 1-17-03.p65 1428
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

49. Oktay JS. Burnout in hospital social workers who work with AIDS patients. Soc 

50. Ross MW, Greenfield SA, Bennett L. Predictors of dropout and burnout in AIDS 

study. AIDS Care 11(6): 723-31, 1999.

51. van Servellen G, Leake B. Emotional exhaustion and distress among nurses: Ho

specific factors? JANAC 5(2): 11-19, 1994.

52. Parks SM, Novielli KD. A practical guide to caring for caregivers. Am Fam Phy

53. American Medical Association. Caregiver health. 2001. American Medical Asso

www.ama-assn.org/ama/pub/category/4642.html. Accessed July 2, 2001.

54. O’Brien J. Caring for caregivers. Am Fam Physician 62(12): 2584 & 2587, 2000

55. Canam C, Acorn S. Quality of life for family caregivers of people with chronic he

Rehabil Nurs 24(5): 192-96, 1999.

56. Field MJ, Cassel CK, eds. Approaching Death: Improving Care at the End of L

National Academy Press, 1997.

57. UNAIDS. AIDS: palliative care. UNAIDS Technical Update, October 2000. UNA

http://unaids.org/publications/documents/care/general/JC-PalliCare-TU-E.pdf. A

58. Alexander C. Palliative and end-of-life care. In Anderson JR, ed. A Guide to th

with HIV, 1st ed. Rockville, MD: HIV/AIDS Bureau, Health Resources and Servi

pp 349-82, 2001. Available at: http://hab.hrsa.gov/publications/womencare.htm

59. Driedger SM, Cox D. Burnout in nurses who care for PWAs: the impact of social s

5: 197-203, 1991.

60. Billings DW, Folkman S, Acree M, Moskowitz JT. Coping and physical health dur

positive and negative affect. J Pers Soc Psychol 79(1): 131-42, 2000.

61. Web of Care. Caring for the caregiver. 1999. Web of Care, Inc. Web Site. www.w

March 14, 2001.

62. Brown D. The Caregiving Years: Six Stages to a MeaningfulExperience. Park 

Company, 2000. Available at: http://www.caregiving.com. Accessed February 14

63. Houts PS, ed. Home Care Guide for HIV and AIDS: For Family and Friends G

Philadelphia: American College of Physicians, 1997.

64. Novick PK. Self-care for caregivers. Conscious Choice November: 1-5, 1996. Av

www.consciouschoice.com/issues/cc096/caregivers.html. Accessed April 1, 2001

65. Benton D. How to deal with the stress of caregiving with Donna Benton and Sha

June: 1-5, 2000. Available at: http://mywebmd.com/content/article/1700.50582. 

66. Creason B. Taking care of the caregiver. 2001. About Alzheimer’s Disease Web 

alzheimers.about.com/health/alzheimers/library/weekly/aa041600a.htm. Access

67. Baker S, Sudit M, Litwak E. Caregiver burden and coping strategies used by info

women living with HIV/AIDS. ABNF J 9(3): 56-60, 1998.

68. Carson N. Respite: time out for caregivers. Take Care. 10(1): 1 & 6-8, 2001.

69. Turner HA, Pearlin LI, Mullan JT. Sources and determinants of social support fo

AIDS. J Health Soc Behav 39(2): 137-51, 1998.

70. Sommers T, Shields L. Women Take Care: The Consequences of Caregiving in T

FL: Triad Publishing Company, 1987.

71. Wrubel J, Folkman S. What informal caregivers actually do: The caregiving skil

AIDS. AIDS Care 9(6): 691-706, 1997.

Chpt 20 1-17-03.p65 1429
Chpt 20 1-17-03.p65 1

430
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

WHY PATIENT-CLINICIAN COMMUNICATION

ABOUT PALLIATIVE CARE IS IMPORTANT IN HIV DISE

■ Patients with chronic and terminal diseases like AIDS, cancer, and 

disease frequently do not talk with their clinicians about the kind of ca

their lives.1-4 Randomized controlled trials of interventions to im

communication about end-of-life care have included use of advance 

interventions with patients and/or physicians,6, 7 and the provision of p

patients and physicians,6

 but have not been successful in improving co

of-life care. The reasons these trials have been unable to improve comm

clear, but part of the reason is likely the complexity and difficulty 

palliative care and particularly about dying and death.

Advances in the treatment of HIV infection have been dramatic and unp

improvements in survival and quality of life.8, 9 The new antiretrovira

not successful for all patients; many patients find themselves facing a 

same time that many others are having favorable responses to antiret

and clinicians have described death from AIDS as changing from fat

AIDS to tragedy during the era of highly active antiretroviral therapy.10 

patient dying of AIDS has become more similar to caring for patient

diseases and some clinicians report that these changes have made it ha

about dying and end-of-life care.10

Similar to the data on patients with other chronic diseases, most pati

discussed with their primary care clinicians the kind of care they wan

survey completed in 1985 of patients with HIV infection, although 73

sustaining treatment with their physicians, only one-third of patients r

a discussion.11 In a study of 1031 persons with AIDS published in 19

directives, but only 11% had talked with their provider about advance di

in a U.S. probability sample of 2864 patients representing 231,400 adul

50% of patients reported having some discussion about end-of-life car

36% of patients reported having an advance directive.1

 Although th

increasing over time, still at least half of patients with HIV infection or 

end-of-life care with their primary care provider and two-thirds have 

directives. Furthermore, many of these studies document important diff

of patients who discuss end-of-life care with their primary care clinicia

factor, race, and ethnicity. Gay men are more likely to have been couns

a prior directive than injection drug users 1, 12 and whites are more like

of-life care than blacks and Hispanics.1, 2 Furthermore, even when clinic

end-of-life care, injection drug users report lower quality of commun

care than gay or bisexual men.13 Therefore, many patients with HI

J Randall Curtis, MD, MPH

Chpt 21 1-17-03.p65 1431
432 U.S. Department of Health and Human Services • Health Resources and Services Administ

Several surveys of HIV-infected individuals have examined patient prefe

treatment, and understanding these preferences may help clinicians di

their patients. Singer and colleagues showed that of 101 patients with H

would want mechanical ventilation and CPR in the event of an acute pote

Mouton and colleagues showed that patient treatment preferences wer

ethnicity in that whites were twice as likely to prefer a treatment a

relieving pain as opposed to extending life and that this association persis

for education, income and HIV risk behavior.16 Wenger and colleagu

would prefer life-extending care or care focused on comfort and found 

that they would definitely prefer to extend life, almost 25% stated they w

focus on relieving discomfort even if it meant not living as long.1

 W

clinicians to be aware of these results, there is such diversity of prefe

HIV infection as to make patient-clinician communication of utmost i

COMMUNICATING WITH PATIENTS AND

SIGNIFICANT OTHERS ABOUT PALLIATIVE CARE

■ A number of review articles and books provide clinicians with advice a

with patients and their significant others concerning the delivery of ba

medicine.21 Although these reviews provide valuable insights, they ten

of bad news. Communication about end-of-life care with patients su

threatening illness such as HIV infection or AIDS includes a spectrum 

prognosis, treatment options, goals of therapy, values, and treatment p

caring for patients with chronic and life-threatening diseases need to l

of-life care with their patients.

In the acute care settings, these conversations may concern patients in

in these discussions because of the severity of their illness, and often clin

with family members and friends of the patient.23-25 The acute care se

complicated, confusing, and even discordant data that can be ove

significant others and make them more dependent on the health care 

decisionmaking.26 For example, a critically ill patient may have improve

while showing deterioration in several others. There are also more like

about the appropriate treatment among hospital team members, consu

providers as well as the significant others.26 Finally, patients with HIV i

risk of having estranged family members who are unaware of their HIV 

treatment preferences. Injection drug users commonly have fractur

poor social support that can also complicate these discussions. Theref

in these settings and caring for patients with HIV infection must be s

with patients, extended family members, and significant others in the 

Chpt 21 1-17-03.p65 1432
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

Chapter 18: Legal and Financial Issues.) A logical extension of this a

directives could diminish the need for clinicians to discuss end-of-lif

their significant others. However, numerous studies have suggested th

not significantly affect the aggressiveness or costs of subsequent car

end-of-life decisionmaking in hospital settings.31-33 These studies have 

advance directives.34-36 However, despite a general disillusionment w

can play an important role in some circumstances. For example, patie

surrogate decisionmaker to be a same-sex partner or friend rather th

should complete a durable power of attorney for health care. Howe

clinicians inform patients that completion of the document is only the 

also discuss their values and their treatment preferences with this pers

evidence shows that the most important factor associated with wh

infection have an advance directive is whether their primary care provid

directives with them.1

 These data suggest that providers play an imp

advance directive completion.

Advance care planning, defined more broadly as an ongoing discussion a

decisionmakers, and providers, may be a more effective means of allow

followed if they become too ill to speak for themselves. Although to 

demonstrating the effectiveness of advance care planning, such commu

part of good quality medical care. Advance care planning incorporate

involves having the communication discussed in this chapter.

CURRENT QUALITY OF COMMUNICATION ABOUT PA

■ There are limited data examining the quality of communication a

patients with HIV infection or AIDS. One study assessing the quality of 

that patients are relatively satisfied with this communication, 13 but th

patients’ low expectations. Furthermore, in this study 25% of patient

clinicians did not agree about whether they had discussed end-of-life ca

of communication may be limited.

Previous researchers have assessed the quality of patient-clinician com

hospitalized patients about “Do Not Resuscitate” orders.37 These studie

comings in the communication skills of clinicians, noting that physicia

talking and missed important opportunities to allow patients to discu

and goals of therapy. These investigators also showed that the majorit

that they did a good job discussing “Do Not Resuscitate” orders, but 

training about how to hold these types of discussions with patients.38 

these same investigators examined communication between prima

outpatients about advance directives.39, 40 In this study, investigators ag

Chpt 21 1-17-03.p65 1433
434 U.S. Department of Health and Human Services • Health Resources and Services Administ

data suggest that the quality of patient-clinician communication abou

and unlikely to improve under our current system of health care deliver

These studies challenge us to develop better ways to teach end-of-life 

clinicians in training and in practice.26

THE ROLE OF THE PATIENT’S SIGNIFICANT

OTHERS IN COMMUNICATION ABOUT PALLIATIVE CA

■ The western ethical principle of patient autonomy dictates that pa

in decisions about their medical care and that communication abou

occur with the patient. However, it is important to recognize that many 

significant others to be directly involved in discussions and even decis

fact, when patients are asked for their preference in a circumstanc

communicate and where their advance directives differed from what th

done, most patients stated they would rather that the wishes of their 

This study shows the importance of involving patients’ significa

decisionmaking. The importance of including the patients’ significa

more important when patients are from cultures that focus on the fam

unit. Clinicians working with patients from cultures that focus decis

unit must develop the skills and expertise in communicating with t

Chapter 14: Culture and Care.)

If a patient can no longer communicate his or her wishes for medical 

decisionmaker is usually identified in a hierarchical fashion. First p

individual named in a durable power of attorney for health care and the

most States and countries, the family members primarily responsible f

order, legal spouse, parent, adult children, and siblings. If there is mo

a given level in the hierarchy, such as occurs in the family with several 

countries require that the decision be based on group consensus. Alth

a legal decisionmaker, in most cases the actual decisionmaking proc

conferences and individual meetings with all individuals who have str

Decisionmaking is usually facilitated if all interested individuals are invo

THE ROLE OF THE HEALTH CARE TEAM

IN COMMUNICATION ABOUT PALLIATIVE CARE

■ The health care team is made up of a number of health care profession

nurses, social workers, and others. Different team members may play 

settings. It is important that all team members who are directly inv

with patients and their significant others be aware of all communicati

Consensus within the team is an important step in the process of 

withholding or withdrawing life-sustaining therapy regardless of w

intensive care unit, hospital ward, or outpatient setting. Of the few leg

Chpt 21 1-17-03.p65 1434
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

care settings.44-46 Significant others rate the nurses’ skill at this com

most important clinical skills of nurses.47-50 In a meta-analysis of studi

significant others who have a loved one in intensive care, 8 of the 10 n

communication with clinicians, and the majority of these communica

addressed by the nurses.47 In the outpatient setting, nurses, nurse prac

assistants also may play an important role. However, there are data t

not better at communication about end-of-life care than physicians 51 and

setting nurse practitioners and physicians’ assistant may actually not d

communication about end-of-life.13 Consequently, it is likely that nur

and physicians’ assistants could also benefit from efforts to imp

communication.

In acute care settings, social workers often play an important role in id

significant others, coordinating and scheduling family conferences, an

significant others during the hospital stay. This is a very important ro

care and in communicating with patients’ significant others. The pers

be aware of the medical prognosis and plans and be an active part of 

the outpatient setting, social workers may be the ones primarily respo

discussions with patients and consequently need to develop the same s

communication.

THE ROLE OF CULTURE AND ETHNICITY

IN COMMUNICATION ABOUT PALLIATIVE CARE

■ Culture and ethnicity are important factors to consider in patient-c

and cross-cultural dynamics may be especially important in discussing p

with HIV infection. Black and Hispanic persons, women, and in

disproportionately affected by HIV infection52 and are at increased risk f

medical care.53, 54 They are also less likely to communicate with their 

about end-of-life care than white homosexual or bisexual men with A

they represent important populations to target for improvements in the q

If this is to be done, it will be important to identify the barriers to c

these patient groups and individuals. Nonwhite patients with AIDS 

that they don’t like to talk about end-of-life care and are more likely to 

death could bring death closer than white patients with AIDS.56 Simil

and women with high-risk sexual partners are also more likely to worry 

death it could bring death closer.56 Clinicians should be aware of the 

may exist for patients from different cultures and be open to discussi

with patients.56, 57

Chpt 21 1-17-03.p65 1435
436 U.S. Department of Health and Human Services • Health Resources and Services Administ

or their significant others. Patients and significant others may be just 

withdrawing life-sustaining treatments while clinicians are feeling in

providing care they believe is no longer indicated. Alternatively, the 

others may be considering withdrawal of life-sustaining treatments we

team. The team members may also vary in the timing with which they b

therapy should be withheld or withdrawn. In the acute care setting, n

conclusion earlier than physicians, which can lead to extreme frustra

and interdisciplinary conflict for physicians and nurses.

A potential solution to this difficulty is to begin discussions with the he

and significant others early in the course of a chronic illness. Howev

care these discussions may focus on prognosis, goals of therapy, and 

attitudes toward medical therapy. These early discussions may foresh

subsequent discussions about transitioning to palliative care goals 

withholding life-sustaining treatments. These discussions can also be 

patients and their significant others know that palliative care and end-

topics that the clinician is willing to discuss.

HOW TO TALK ABOUT PALLIATIVE CARE

■ Because discussing palliative care with patients and their significa

part of providing high quality care for patients with life-threatening di

should be approached with the same care and planning that are given to 

procedures. For example, 1) time and thought should be put into the p

to holding this discussion, 2) the location of the discussion should be 

preliminary discussion should be held with the patient about who sho

will be covered during the discussion, and 4) what is likely to happen af

be anticipated. These four issues address the processes that ideally sho

and after the discussion. Table 21-1 outlines some of the steps t

communication about palliative care and these are described in more 

 Table 21-1: Components of a Discussion About End-of-Life 

I. Making Preparations before a Discussion about 

• Review previous knowledge of the patient and/or their s

• Review previous knowledge of the patient’s attitudes an

• Review your knowledge of the disease – prognosis, treat

• Examine your own personal feelings, attitudes, biases, a

• Plan the specifics of location and setting: choose a quie

• Have advance discussion with the patient or family about 

Chpt 21 1-17-03.p65 1436
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

y p

• Find out what the patient or significant other understan

• Find out how much the patient or significant other want

• Be aware that some patients do not want to discuss end

• Discuss prognosis frankly in a way that is meaningful to 

• Do not discourage all hope

• Avoid temptation to give too much medical detail

• Make it clear that withholding life-sustaining treatment 

caring

• Use repetition to show that you understand what th

significant other is saying

• Acknowledge strong emotions and use reflection to enc

their significant others to talk about these emotions

• Tolerate silence

III. Issues That May Be of Special Importance f

Some Patients with HIV/AIDS

• If patients have strong treatment preferences, discuss 

advance directive

• Consider durable power of attorney and importance of ha

treatment preferences, goals, values with that person

• Discuss cultural or religious views, attitudes, and prefer

• Consider discussing preferences regarding place of dea

regarding burial or cremation

IV. Finishing a Discussion of End-of-Life Care

• Achieve common understanding of the disease and treat

• Make a recommendation about treatment

• Ask if there are any questions

• Ensure basic follow-up plan and make sure the patient 

others know how to reach you for questions

Chpt 21 1-17-03.p65 1437
438 U.S. Department of Health and Human Services • Health Resources and Services Administ

Clinicians should identify gaps in their knowledge by systematically re

and seek out the information they need before they find themselves in a 

or their significant others. Clinicians should also be aware of the 

occurred with other team members and of the plans for care establish

other care provider responsible for the patient’s care.

It is also important for clinicians to review what they know about the 

and social support network including their relationships with one anoth

illness, treatment, and death, and their prior reactions to information 

If, for example, there are significant others who have had strong em

news, it may be helpful to mobilize the aid of a family member, friend, 

a social worker or chaplain, who can support them through and after 

clinician.

Finally, it is useful for clinicians to consider their own feelings of grie

holding a discussion about palliative care with patients or significa

especially important when the clinician has known the patient or sign

time, when the clinician and patient or significant other have been t

when the clinician has some feelings of inadequacy about the patient’

Acknowledging these feelings explicitly can help the clinician avoid p

feelings or biases onto the patient or the significant others. In addi

feelings of guilt or inadequacy can lead him or her to avoid the patient 

avoid talking with them about death. Reviewing these feelings by oneself 

can be the first step to becoming more comfortable discussing dying an

significant other.60, 61

An additional step in preparing for an end-of-life discussion is to plan w

take place and who will be there. Ideally, these discussions should t

private room where there is some assurance that people, phones, or pag

discussion. It should be a room that is comfortable for all the part

medical machinery or other distractions such as medical diagrams. All 

at the same level around a table or chairs in a circle. It is best to avoid 

behind a desk with the patient and significant others in front of the 

participate in the discussion but is too ill to leave their hospital bed, e

make the room comfortable for everyone present.

Before the scheduled conference about palliative care, the clinician

others should discuss who should be present for the conference. In add

make certain that all appropriate members of the staff are consulted ab

be present, including the medical staff, nursing staff, chaplains, and 

involved with the patient or significant others. Ideally, someone shou

scheduling the conference at a time when as many as possible can be p

to suggest that patients and their significant others write down a

beforehand to be sure their questions are answered.

Chpt 21 1-17-03.p65 1438
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

either on the staff or in the patient’s life.

Introducing the issue of palliative or end-of-life care can be a crucial a

discussions. Often, by the time these discussions occur, everyone i

discussion will focus on how to help the patient transition to palliative 

in comfort and with dignity. But sometimes patients or their signif

aware that this is a part of the clinician’s agenda. In those situations, t

the patient or significant others as comfortable as possible talking ab

these latter situations, it may be helpful to frame the discussion b

discussions that are held with all patients with HIV infection or, if app

Not everyone present will have the same level of understanding of the 

it is often helpful to first find out what the patient and significant o

patient’s situation. This can be a useful way for the clinician to determin

can be given, the level of detail that will be understood, and the amou

that can be used. It can also be useful in some settings to ask the pat

how much they want to hear on this day as a way to gauge how much i

give. Clinicians should avoid unnecessary technical jargon and should 

technical jargon rather than saying words like “dying” or “death.” C

cautious about using medical detail to cover the uncomfortable mes

prognosis. However, some patients will be very familiar with technic

sophisticated explanations of their condition. Therefore, it is importa

knowledge and desire for information.

During these discussions, it is important to discuss prognosis in an hone

to patients and their significant others. For example, the term “med

meaningful to most people. In discussing prognosis, clinicians should 

degree of uncertainty in the prognosis. Finally, it is important to pro

about the prognosis without completely discouraging hope from those 

would like to maintain their hope. This can be a difficult balancing ac

part of the art of holding these discussions. There are several specific 

allow patients or their significant others to maintain their hope in the 

First, the clinician can allow the patient or significant other some ti

prognosis. In the acute care setting, sometimes this can take days; in th

can take weeks, months, or even years. Regardless of how much time 

to patients or significant others if they are allowed to make this tran

Second, the clinician can help the patient or significant other redir

them from a hope for recovery to hope for other things such as qualit

remains, some quality time together, achieving a particular goal, or a co

pain or discomfort and with as much dignity and meaning as possible.

Chpt 21 1-17-03.p65 1439
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greatly facilitate decisions about palliative care. This does not mea

convince the patient or significant other of the clinicians’ views, but r

of the differences and work toward compromise.

It is extremely important in a discussion about palliative care that 

significant others understand that if the decision is made to withhold 

treatment, the clinicians themselves are not withdrawing from carin

this may seem obvious to some clinicians, it should be stated explicitly 

to avoid any misunderstanding.

After discussing prognosis and treatment options and the patient’s or s

understanding, it is important to spend some time exploring and listen

or significant others’ reactions to what was discussed. Clinicians should 

and significant others will react to their perception of what was said an

in the way the clinician expects. There are several useful techniques t

explore patients’ or significant others’ reactions. First, it can be helpfu

or significant others have said as a way to show that the clinician has 

clinician’s understanding. This can be particularly useful when the cli

significant other have different views of what is happening or what sho

important to acknowledge emotions that come up in these discussions

anger, anxiety, guilt, or sadness, it is useful for the clinician to acknowle

that allows the person with the emotion to talk about their feelings. 

emotions, it can be useful for the clinician to use reflection to show em

discussion about the emotion. For example, a clinician can say “it seem

angry about the care you have received, can you tell me why that is?” 

can show empathy for a patient and allow that patient to talk abou

another technique clinicians can use in these discussions is to tolerate 

is after what seems like a long silence that patients or significant othe

difficult question or express a difficult emotion.

Important Issues in Discussions About Palliative

and End-of-Life Care in HIV/AIDS

There are some unique features about HIV/AIDS that warrant addit

demographics of the HIV epidemic requires that clinicians caring for t

and experience in discussing palliative care with young patients, in cros

and with patients who do not have intact social support systems. If clin

tion of patients from a specific culture, ethnicity, or religion, it beho

some of the cross-cultural issues that may arise around palliative car

those patients. It is also important not to assume that a patients’ ra

necessarily defines their attitudes toward death or the disclosure of pr

addition, it may not be possible for clinicians to be aware of the cultu

death for all cultures from which their patients may come. Therefore

Chpt 21 1-17-03.p65 1440
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tance for patients with AIDS who may be more likely to wish to have 

friend make decisions for them if they are unable rather than have this 

of their legal next of kin.

Table 21- 2: Exploring Cultural Beliefs in Discussing Palliat

1. What do you think might be going on? What do you call t

2. What do you think has caused the problem?

3. What do you think will happen with this illness?

4. What do you fear most with this illness?

Source: Adapted from Kleinman A, Eisenberg L, Good B. Culture, illness and care: Clinical less

cultural resreach. Ann Intern Med 88:251-8, 1978.

Second, the dramatic improvements in survival due to advances in an

the 1990’s requires clinicians to address palliative care with patients w

diverse experiences of the AIDS epidemic. Some patients may have co

nal disease only to respond to anti-retroviral therapy and come to belie

cured or controlled and then have to readdress the terminal nature 

patients may have always viewed HIV/AIDS as a curable or controlla

disillusionment with the medical system if their disease progresses or m

lapses in adherence with their treatments. Some patients may have fr

responding well to anti-retroviral therapy at the same time that their ow

is failing them. These variations may each require different approache

cian caring for these patients. Many patients will benefit from open an

about their concerns and worries.

Finally, many patients with HIV/AIDS have a history of drug addiction a

them great concern regarding the adequacy of pain assessment and mana

the end-of-life.66 A drug addiction history may complicate pain managem

in general patients should be reassured that their history of drug addi

equate treatment of pain and other symptoms during the terminal ph

Chapter 11: Substance Use Problems.)

Finishing a Discussion about Palliative and End-of-Life C

Before finishing a discussion about end-of-life care, there are seve

should make. First, it is important that clinicians make recommendatio

With the increasing emphasis on patient autonomy and surrogate decis

a tendency for some clinicians to describe the treatment options to a pa

but to then feel like they should not make a recommendation. On the 

that clinicians offer their expertise to patients and their significant ot

their expertise is making a recommendation.62 This is especially impo

Chpt 21 1-17-03.p65 1441
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uncomfortable questions to surface.

Finally, before completing a discussion about end-of-life care, clinicians 

is an adequate follow-up plan. This often means a plan for when the cli

patient or significant other again and a way for the patient or signifi

clinician if questions arise before the next meeting.

UNDERSTANDING OUR OWN DISCOMFORT DISCUSS

■ Discomfort discussing death is universal. This is not a problem uniq

social workers, or other health care providers, but has its roots in our 

and death. Medical schools and nursing schools have only recently beg

to help patients and families through the dying process and still do so 

medical textbooks have had scant information about end-of-life care.42 

is not surprising that many clinicians have difficulty talking with their p

palliative or end-of-life care. Furthermore, the medical culture is on

save lives, and for many clinicians discussing dying and death is ev

technologic, aggressive care era. To compound this difficulty, clinic

patient’s death will reflect poorly on their skills as a clinician and rep

part to save or extend the patient’s life.

It is important for clinicians to recognize the difficulty they have discu

clinicians acknowledge this difficulty, they can work to minimize som

that such discomfort can cause. For example, discomfort discussing de

to give mixed messages about a patient’s prognosis or to use euphemism

may even cause clinicians to avoid speaking with a patient or their signif

this discomfort and being willing to confront it is the first step in over

effective communication about dying and death with patients and 

Resources exist to help clinicians address these issues.60, 61

CONCLUSION

■ Discussing palliative care, dying, and death with patients and thei

extremely important part of providing good quality care for patien

threatening disease such as HIV infection or AIDS. While there is l

guide clinicians in determining the right time or the most effec

conversations, there is a developing experience and an increasing em

important part of the care we provide and an important part of trainin

other clinical skills, providing sensitive and effective communication abo

training and practice as well as planning and preparation. While diffe

varying approaches and should change their approaches to match th

their families, this chapter reviews some of the fundamental componen

care and end-of-life care that should be part of the care of most patie

threatening illnesses.

Chpt 21 1-17-03.p65 1442
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1. Wenger NS, Kanouse DE, Collins RL, et al. End-of-life discussions and preferenc

JAMA, 285:2880-7, 2001.

2. Haas JS, Weissman JS, Cleary PD, et al. Discussion of preferences for life-sustain

AIDS. Arch Intern Med, 153:1241-8, 1991.

3. Virmani J, Schneiderman LJ, Kaplan RM. Relationship of advance directives to 

communication. Arch Intern Med, 154:909-13, 1994.

4. Heffner JE, Fahy B, Hilling L, Barbieri C. Attitudes regarding advance directives 

pulmonary rehabilitation. Am J Respiratory Critical Care Med, 154:1735-40, 19

5. Schneiderman LJ, Kronick R, Kaplan RM, Anderson JP, Langer RD. Effects of of

medical treatment and costs. Ann Intern Med, 117:599-606, 1992.

6. The SUPPORT Principal Investigators. A controlled trial to improve care for seri

the study to understand prognoses and preferences for outcomes and risks of tre

JAMA, 274:1591-8, 1996.

7. Danis M, Southerland LI, Garrett JM, et al. A prospective study of advance direc

N Engl J Med, 324:882-8, 1991.

8. Carpenter CCJ, Fischl MA, Hammer SM, et al. Antiretroviral therapy for HIV inf

an international panel. JAMA, 276:146-54, 1996.

9. Palella FJ, Delaney KM, Moorman AC, et al. Declining morbidity and mortality a

human immunodeficiency virus infection. N Engl J Med, 338:853-60, 1998.

10. Selwyn PA, Arnold R. From fate to tragedy: the changing meanings of life, death

Ann Intern Med, 129:899-902, 1998.

11. Steinbrook R, Lo B, Moulton J, et al. Preferences of homosexual men with AIDS 

N Engl J Med, 314:457-60, 1986.

12. Teno J, Fleishman J, Borck DW, Mor V. The use of formal prior directives among 

diseases. J Gen Intern Med, 5:490-4, 1990.

13. Curtis JR, Patrick DL, Caldwell E, Greenlee H, Collier AC. The quality of patient

about end-of-life care: a study of patients with AIDS and their primary care clini

14. Teno JM, Mor V, Fleisman J. Preferences of HIV-infected patients for aggressive 

(letter). N Engl J Med, 324:1140, 1991.

15. Singer PA, Thiel EC, Flanagan W, Naylor CD. The HIV-specific advance directive

12:729-35, 1997.

16. Mouton C, Teno JM, Mor V, Piette J. Communication of preferences for care amo

virus-infected patients. Arch Family Med, 6:342-7, 1997.

17. Campbell ML. Breaking bad news to patients. JAMA, 271:1052, 1994.

18. Buckman R. Breaking bad news: why is it still so difficult? Br Med J, 288:1697-9

19. Buckman R. How to Break Bad News. Baltimore: Johns Hopkins University Pres

20. Quill TE, Townsend P. Bad news: delivery, dialogue, and dilemmas. Arch Intern M

21. Lo B, Quill T, Tulsky JA, for the ACP-ASIM End-of-Life Care Consensus Panel. Di

patients. Ann Intern Med, 130:744-9, 1999.

Chpt 21 1-17-03.p65 1443
444 U.S. Department of Health and Human Services • Health Resources and Services Administ

N Engl J Med, 322:309-15, 1990.

25. Prendergast TJ, Luce JM. Increasing incidence of withholding and withdrawal o

critically ill. Am J Respir Crit Care Med, 155:15-20, 1997.

26. Danis M, Federman D, Fins JJ, et al. Incorporating palliative care into critical c

challenges, and opportunities. Crit Care Med, 27:2005-13, 1999.

27. Singer PA, Siegler M. Advancing the cause of advance directives. Arch Intern Me

28. Emanuel LL, Emanuel EJ. The medical directive. JAMA, 261:3288-93, 1989.

29. Emanuel LL, Barry MJ, Stoeckle JD, Ettelson LM, Emanuel EJ. Advance directiv

for greater use. N Engl J Med, 324:889-95, 1991.

30. Danis M, Mutran E, Garrett JM. A prospective study of the impact of patient pre

treatment and hospital cost. Crit Care Med, 24:1811-17, 1996.

31. Teno JM, Lynn J, Connors AFJ, et al. The illusion of end-of-life savings with adva

J Am Geriatric Soc, 45:513-18, 1997.

32. Teno JM, Lynn J, Wegner N, et al. Advance directives for seriously ill hospitalize

the Patient Self-Determination Act and the SUPPORT Intervention. J Am Geria

33. Teno JM, Licks S, Lynn J, et al. Do advance directives provide instructions that d

J Am Geriatric Soc, 45:508-12, 1997.

34. Block JA. Living wills are overrated. Chest, 104:1645-6, 1993.

35. Dresser R. Confronting the “near irrelevance” of advance directives. J Clin Ethi

36. Tonelli MR. Pulling the plug on living wills: a critical analysis of advance directi

37. Tulsky JA, Chesney MA, Lo B. How do medical residents discuss resuscitation w

J Gen Intern Med, 10:436-42, 1995.

38. Tulsky JA, Chesney MA, Lo B. See one, do one, teach one? House staff experienc

do-not-resuscitate orders. Arch Intern Med, 156:1285-9, 1996.

39. Tulsky JA, Fischer GS, Rose MR, Arnold RM. Opening the black box: how do phy

advance directives? Ann Intern Med, 129:441-9, 1998.

40. Fischer GS, Tulsky JA, Rose MR, Siminoff LA, Arnold RM. Patient knowledge an

treatment preferences after discussion of advance directives. J Gen Intern Med

41. Hofmann JC, Wenger NS, Davis RB, et al. Patients’ preferences for communicati

about end-of-life decisions. Ann Intern Med, 127:1-12, 1997.

42. Rabow MW, McPhee SJ, Fair JM, Hardie GE. A failing grade for end-of-life conte

What is to be done? J Palliative Med, 2:153-5, 1999.

43. Swigart V, Lidz C, Butterworth V, Arnold R. Letting go: family willingness to forg

Heart Lung, 25:483-94, 1996.

44. Jamerson PA, Scheibmeir M, Bott MJ, Crighton F, Hinton RH, Cobb AK. The exp

relative in the intensive care unit. Heart Lung, 25:467-74, 1996.

45. McClement SE, Desgner LF. Expert nursing behaviors in care of the dying adult 

Heart Lung, 24:408-19, 1995.

46. Hampe SO. Needs of the grieving spouse in a hospital setting. Nursing Res, 24:1

47. Hickey M. What are the needs of families of critically ill patients? A review of th

Heart Lung, 19:401-15, 1990.

Chpt 21 1-17-03.p65 1444
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51. Maguire PA, Faulkner A. Helping cancer patients disclose their concerns. Eur J 

52. Centers for Disease Control and Prevention. Update: Trends in AIDS incidence, 

United States, 1996. MMWR, 46:165-73, 1997.

53. Bastian L, Bennett CL, Adams J, Waskin H, Divine G, Edlin BR. Differences betw

HIV-related Pneumocystis carinii pneumonia: experience from 3,070 cases in N

J Acquired Immune Deficiency Syndrome, 6:617-23, 1993.

54. Horner RD, Bennett CL, Achenbach C, et al. Predictors of resource utilization fo

Pneumocystis carinii pneumonia (PCP): a summary of effects from the multi-c

care. J Acquired Immune Deficiency Syndrome Human Retrovirol, 12:379-85, 

55. Teno JM, Lynn J, Phillips RS, et al. Do formal advance directives affect resuscita

of resources for seriously ill patients? J Clin Ethics, 5:23-30, 1994.

56. Curtis JR, Patrick DL, Caldwell E, Collier AC. Why don’t patients with AIDS and 

end-of-life care? Barriers to communication for patients with AIDS and their pri

Arch Intern Med, 160:1597-601, 2000.

57. Curtis JR, Patrick DL. Barriers to communication about end-of-life care in AIDS 

12:736-41, 1997.

58. Asch DA. The role of critical care nurses in euthanasia and assisted suicide. N E

59. Asch DA, Shea JA, Jedrziewski MK, Bosk CL. The limits of suffering: critical car

care at the end of life. Social Sci Med, 45:1661-8, 1997.

60. Viles L. Death and the practitioner. Respiratory Care, 45:1513-24, 2000.

61. Block SD. Helping the clinician cope with death in the ICU. In Curtis JR, Ruben

Death in the Intensive Care Unit: The Transition from Cure to Comfort. New Yo

Press, 2000.

62. Quill TE, Brody H. Physician recommendations and patient autonomy: finding a 

power and patient choice. Ann Intern Med, 25:763-9, 1996.

63. Billings JA, Block S. Palliative care in undergraduate medical education: status 

JAMA, 278:733-8, 1997.

64. Kleinman A, Eisenberg L, Good B. Culture, illness, and care: clinical lessons fro

cross-cultural research. Ann Intern Med, 88:251-8, 1978.

65. Back AL, Curtis JR. Communicating bad news. Western J Med 2002, in press.

65. Curtis JR, Wenrich MD, Carline JD, Shannon SE, Ambrozy DM, Ramsey PG. Pati

physicians’ skill at end-of-life care: Differences between patients with COPD, ca

in press.

Chpt 21 1-17-03.p65 1445
Chpt 21 1-17-03.p65 1

446
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INTRODUCTION

■ The focus of this chapter is planning for and facilitating the transitio

tive care, with emphasis on the initiation of either home-based suppor

care. The interdisciplinary team approach is described. Strategies for p

and staff education and support will be identified and institutional issue

provision of effective palliative care are explored.

The primary goals of palliative care are to maximize the patient’s sen

relationships with loved ones and limit care burdens.1,2,3 The importan

ate services in the successful delivery of palliative care to the chronical

with HIV cannot be overestimated. Knowledge of community resource

sistance programs, housing, personal finance, disability benefits, tran

of durable medical equipment, case management, food and shelter and 

essential for helping the patient and family deal with the social sequ

and death.

HIV is not just another terminal illness. If the same “too young” person p

life-threatening diagnosis of leukemia, health care teams would probab

for support. In contrast, people with HIV often choose to keep their di

as fear and discrimination exist, agencies may be reluctant to accep

AIDS. Stigma associated with HIV and, hence, disclosure of HIV status c

problems complicating care.

THE INTERDISCIPLINARY TEAM

■ Palliative care, by definition, is provided by an interdisciplinary tea

physician, nurse (including nurse practitioners and nurses), social w

lain, and other professionals, includes the patient, family, caregivers a

portant to the patient. The interdisciplinary team is a group of indiv

with a common purpose for the greater good of the patient with advanc

family.5

 The goal of the interdisciplinary team is to provide the patient 

work of emotional, physical, spiritual, and social support during the ti

In the United States, the nurse, social worker or case manager often h

bility for the practical issues discussed in this chapter. It is importan

viduals involved in the care of a person with advanced HIV disease be a

be prepared to take the necessary steps to address patient and family n

ing the transition to palliative care.

While each member of the team has particular expertise, all share re

enabling, support, truthfulness, and mediation such that crises are pr

Harlee S Kutzen, MN, ACRN

Chpt 22 1-17-03.p65 1447
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family. Interdisciplinary team members should include the combined eff

practitioners who offer confidential, nondiscriminatory, nonjudgmenta

care. Each individual has particular expertise and training and is resp

sions and contributions within the area of their experience and knowl

The following sections describe the various roles and functions of HIV 

plinary team members.

Patient and Family Caregivers

The primary member of the interdisciplinary team is the person liv

his or her family. Patients and their caregivers need to be active pa

implementing the plan of care in order for the other members of th

understand the complex care of families affected by HIV, their advance

family caregiver concerns regarding approaching death, and HIV-spec

Far too often, health care teams see themselves as the “providers” and 

simply the “recipients” of their care. Advanced HIV disease care plann

alized in this manner: patients, family members and the interdisciplin

address care planning and support on a mutual, interactive and fluid b

Medical Providers

Medical providers include physicians, residents, interns, fellows, 

physician’s assistants. Responsibilities of these team members includ

• Diagnosis

• Prognosis

• Symptom prevention

• Design of treatment plan

• Education and communication with staff, patient, and famil

and response to treatment.

Medical providers’ decisions should be sensitive to cues of advancing 

unrelated to lab test values and diagnostic procedures. Consulting phy

to primary medical providers, and should work as part of the team, no

Specialists may include psychiatrists, ophthalmologists, neurologists, 

oncologists, gynecologists, orthopedists, or providers of any other spec

Nurses

Nurses include staff nurses, nurse practitioners, and clinical specia

case management, palliative care, mental health, and home and com

responsibilities include assessment of patients’ physical and mental ca

Chpt 22 1-17-03.p65 1448
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the effects of advancing HIV disease. This includes attention to some 

intimate aspects of physical care: pain and symptom assessment an

care such as bathing, control of odor, care of pressure areas, mouth 

care, as well as patient and family education on anticipated care need

patient’s and family’s level of knowledge of disease, symptom manage

ability to differentiate emergencies from normally anticipated events

changes in patient status and emergencies.

As patient advocates, nurses help ensure, in collaboration with social 

of the patient are met, enabling the dying person and the family to 

decisions.

Clinical Liaison Nurses

Clinical liaison nurses promote up-to-date communication between 

tient setting and those in the inpatient unit, particularly for patients 

require home-based care services. Generally, the nurse’s role is to sup

current censuses of active patients receiving home care and hospic

responsibilities may include the following:

• Monitoring for timely response from home care and hospice 

patient care coordination

• Tracking home care and hospice agency paperwork and med

make sure the medical provider has access to the most curre

• Making sure the agency has appropriate medical signatures

A clinical liaison nurse’s activities also may include daily contact with h

sors and field staff regarding changes in patient status, streamlining o

fication of minor orders, and facilitation of urgent appointments. Bec

change quickly, the liaison nurse provides troubleshooting for equipme

vice approvals with HIV/AIDS programs, and contact of care provider

nary team members on the complex issues at home for each patien

clinical liaison nurses in support of the continuum of palliative care.

Social Workers

The goal of social work in palliative care is to help the patient and fam

and social problems of illness, disability, and impending death, and 

building and support. Social workers assess many important areas of n

family, and help the family develop realistic plans for the present as 

strengths and challenges of each family unit are assessed and refe

resources.

Chpt 22 1-17-03.p65 1449
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organizations that may be willing to provide assistance for the patient 

Social workers also assess cultural and sociocultural factors unique t

such as use of folk medicine or alternative healing practices in the hom

and desire to care for the patient in a specific setting. The family c

accept a death at home and therefore not even the best hospice and 

support in the home will foster a peaceful death at home. In these circ

emergency room or during a return admission to the hospital may be 

considers the “best death possible.”

Social workers can be particularly helpful when there is dysfunction w

substance and alcohol abuse are increasingly common within HIV car

sist with screening for use and abuse, assessment of desire and need fo

and gaining access to such services.

One of the most important roles of social workers is advocacy on behalf 

Social workers promote continuity of care transitions between hospita

residential placement, making referrals to experienced home care an

arranging for durable medical equipment and supplies. Often social w

naming the actual needs of the patient and family.

Nutritionist

Nutritionists and dieticians work with patients in all stages of H

needed as a patient’s condition begins to deteriorate. Nutritional intak

emotional issues for family members and interdisciplinary teams. Bot

trition increase as HIV disease progresses. Changes in body composit

tion, digestion, tolerance of food, and side effects from therapies contri

of life for persons living with advanced HIV disease. Even when patie

nutritional knowledge, resources, and support, they may be unable to 

cians can assist with early detection of factors related to impaired nutr

erate physical decline. Integration of anabolic therapies, nutritional sup

lants, and nutritional counseling are important for comprehensive HIV 

In advanced stages of HIV disease, reduced intake may not be a primary 

Identification of the point when the nutritional interventions are fail

tient, family, and interdisciplinary team members. Nutritional goals are 

cally ill and terminally ill patient. Registered dieticians can discuss bo

related to the prediction of the end-of-life. They are trained to unders

social factors, monitor the effects of HIV on body composition and the 

metabolism, and address the role of changes in body shape in end-of

tients and families. Complex nutritional concerns are mediated by ac

erty, dementia, homelessness, adolescent motherhood, and complex m

tritionists can be valuable in discussions of the pros and cons of end-of

tion options.

Chpt 22 1-17-03.p65 1450
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evaluate and consult complex care situations.

Chaplains

Chaplains are available to assist the patient and his or her family in 

of illness in their lives as well as their fears, desires, and unfinished 

chaplains include being a nonjudgmental resource for referrals for ad

port as desired by patient and family. Sympathetic chaplains are skil

meet patients and families without judgment. They are key team me

complex fears, stigma, chronic pain, symptoms and losses related to 

special presence with a focus and a stimulus for airing questions of me

present for patients and families with advanced disease. Issues of guil

of meaninglessness, and the need to be listened to are important conc

ily. Ideally chaplains offer a spiritual presence, not religious. Becau

disciplines of the palliative care interdisciplinary team have many con

tasks, chaplains are able to visit without any task agenda and follow th

family on a deep and existential level. Facilitating life review, dealing w

for what has brought love and meaning, naming life closure tasks, an

ahead are important responsibilities of this role.

Physical Therapists

Physical therapists provide physical assessment, education for pati

resources to enable patients to transfer safely, stabilize gait, and be mo

need for durable medical equipment. As patients are living longer wit

living with neuromuscular deficits for longer periods of time. Home s

are ongoing goals for the patient and family. In the palliative care se

therapy goal may be to maximize patients’ changing and often dimini

rather than to improve function.

Community Case Manager

The community case manager collects information about physical an

ing and patients’ social environments, develops care plans based on ho

tion and availability of resources, and links patients and families to co

cial assistance, and medical and social services. In addition, a commu

tors patients on an ongoing basis, holds case conferences with other m

team to evaluate the appropriateness of linked services for patient and 

cates to reduce barriers to services or generate needed services for in

Chpt 22 1-17-03.p65 1451
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illness. There is, however, often a time in the course of care when 

curative to palliative care is made. In the U.S., because of the peculia

tive care services, most often this involves a transition from traditiona

care. Traditionally, palliative care was ‘saved’ for hospice care. With th

antiretroviral therapy (HAART), new theories of resistance, and re-sen

categories of patients can be considered equally eligible for palliative 

ease-specific care. Integrating palliative care, clinical, social, and s

promotes quality of life and realistic life planning.

Discussions with patients and families about palliative and hospice car

the most experienced providers. Provider communication issues are dis

ter 21. Some providers find it useful to keep in mind a sequence of fa

lead into a discussion of palliative care, first blending discussion of d

with palliative care, moving toward exclusive focus on palliative care, 

ing hospice care (see Table 22-1). It is also helpful to give patients and 

hospice that explains how the care addresses their stated wishes and c

“hospice” is used, to reduce risk of rejection (see Table 22-2).

Planning for the transition into palliative care must begin with an und

and family’s desires, expectations, and understanding of the patient’s ill

believe that hospice care means giving up all medications and getting re

often a mistake to jump directly into a discussion of hospice per se beca

unfamiliar with contemporary hospice approaches may attach negative 

If the health care provider begins a conversation about hospice care or p

learning the patient’s perception of his or her status, there is a great chan

such care. It is important that providers assess immediate needs and p

patient and family rather than assume that a problem that is obvious to t

ate concern to the recipients of care.10 The most important goal of inter

facilitate discussion so that the patient and family’s responses are as ho

sible. (See Chapter 21: Patient-Clinician Communication.)

Advanced End-of-Life Planning Discussions

Each member of the interdisciplinary team must be able to initia

care, end-of-life care, and hospice services. Understanding the patient 

on their current and future needs and desires will help guide this plann

The following questions provide a guide for initiating a discussion abo

periences, desires and planning.

Begin by sitting close to the patient (preferably at eye level). Explain 

has been living with HIV for some time and that you would like to learn m

is doing. Explain that understanding more about his or her needs will 

Chpt 22 1-17-03.p65 1452
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What has your medical team told you about your condition? Wh

tion mean to you?

This question is essential to assessing the accuracy of the patient an

of the current medical status and prognostic factors. Often a patient m

getting worse, or not getting better, but that the medical team is telling 

is going to get stronger. If the patient responds with little emotion or sim

team’s words, ask, What is your body telling you about how you a

prompts a more introspective response that is always revealing of inne

Question 2

Tell me about your good days...What are you able to do on those 

The response to this question is equally revealing. The responses o

will let you know what gives them pleasure. By hearing about unique 

meaning, the team can learn whether and what pleasure activities are 

and family. It is also a way for them to face the realities of how long it 

had several of “those” good days in a week. Such information helps pro

speed of loss of strength and other changes.

Question 3

When is the last time you had a day like that in the past two mon

This assesses the degree of changes in physical strength, independe

most recent holiday is often a period of time that stands out memorab

recall where they were, what they wore and ate, and how they felt at t

Because shortened prognosis is often connected to increasing weakn

and family to answer this question aloud helps them state in their ow

ways things may be different now. This begins the patient and family’s 

disclosure about important changes in current energy and needs in t

enhances realistic planning.

Question 4

Have you had any bad days lately? What makes them bad?

Health care providers so often are concerned with a patient’s viral 

cations, and weight stability that we forget to ask the patient what defi

Listening carefully to the patient’s response, we learn about not only 

priority concerns but under-managed symptoms impairing the patien

may have been unaware of before. Patient and family responses also 

which the family may need outside assistance, such as on-call nursing 

respite assistance.

Chpt 22 1-17-03.p65 1453
454 U.S. Department of Health and Human Services • Health Resources and Services Administ

they will use up their personal favors too soon. Give the patient a

fantasize about what kinds of things may be helpful.

Question 6

If your condition worsens, do you wish to go back to the hospita

Traditionally, we tell patients, “If you get worse, go to the Emergen

there is an acute infection or event that will respond well to emergenc

son with advanced HIV who has been hospitalized a number of times m

ered not wanting to come back to the hospital. The patient’s response t

to guide home-based care options such as referring the patient to ho

patient who is sure he or she wants to return to the hospital is a better 

where the on-call service is designed for emergency intervention.

Question 7

What are your most meaningful goals at this time in your life? I

can do to help you achieve them?

Adults and children all have meaningful life goals. Some people ar

their goals, others have barely whispered them to their closest confida

understanding of the patient’s goals, team members learn how to p

supports. For example, a woman who needs to complete guardiansh

children may benefit from the support of blood transfusions for tempo

person who has settled his or her affairs might not consider it a benef

Question 8

In the event of your death, is there anyone or anything that you 

When people think of the possibility of their own deaths, sometime

think of the needs of others rather than themselves. This pertains to 

loved ones as well as cherished pets, plants, or any other living things t

hospitalization, long-term placement or death. A hospital stay can pro

custody or referral information. Sometimes, discussing these concern

tients to express their anticipatory grief for meaningful aspects of the

know that these will be cared for. Discussing such worries can facilitat

hospice services so that their loved ones can benefit from the social wo

ment follow-up.

Question 9

Have you ever heard of a medical power of attorney or a health c

Assignment of a health care proxy to make medical decisions on the

safeguard for patients to know that their end-of-life wishes will be h

select a person who knows and understands their personal desires fo

that will affect the direction of their care. Providers should inform bo

Chpt 22 1-17-03.p65 1454
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

A living will demonstrates a clear and deliberate desire not to have 

natural limits, and most frequently denotes withholding invasive life-su

true copy of this document should be placed in the patient’s chart in th

tial facility, extended care, and home-based care settings. Patients sho

their state honors this document as a legal determinant of care plann

that can be overruled by their primary provider.

Question 11

 Are you having any chronic pain or distressing symptoms?

At an advanced stage of any disease, chronic symptoms not only se

vancing illness and provide a negative distraction from enjoying the lim

able, but also become internalized as an intense task of spiritual copin

for a person to relish quality time with loved ones or complete impor

constantly struggling with nausea, pain, diarrhea, itching, or other unc

patient whose symptoms have been very difficult to control may benefit 

tom management of the hospice team, and such information can be sta

hospice care.

Question 12

What can we do to make your life more comfortable / manageab

Listening to the patient and family’s responses, repeating back thei

know that you have heard them provide powerful validation for patients 

reasonable requests have been stated. It is most important to respond to 

as possible. A response may be as simple as letting the patient go home 

with family and completing future tests on an outpatient basis. Or, 

arranging for minor age visitors to visit their loved one in a room with 

Table 22-1: Initiating Advanced Disease Planning Discussio

1. What has your medical team told you about your condition? W

information mean to you?

2. Tell me about your good days. What are you able to do on thos

3. When is the last time you had a day like that in the past two m

4. Have you had any bad days lately? What makes them bad?

5. What kind of assistance do you need on these bad days?

6. If your condition worsens, do you want to go back to the hospi

7. What are your most meaningful goals at this time in your life? 

can do to help you achieve them?

8. In the event of your death, is there anyone or anything that yo

Chpt 22 1-17-03.p65 1455
456 U.S. Department of Health and Human Services • Health Resources and Services Administ

11. Are you having chronic pain or other distressing symptoms?

12. What can we do to make your life more comfortable/managea

Only after these questions have been asked and answered is it time to e

options for advanced disease care. From the content of this prompted 

ners should have learned about the patient and family’s concerns abou

approaching death, the presence of distressing symptoms, and after-h

tening to the patient and family recall the frequency of good days ver

gression to death can also be estimated. Any ambivalence about return

the patient’s condition worsens should also have been clarified. Finally

own words, their personal examples of concerns, and their identifica

guide the wording to be used in explaining palliative care, hospice, h

care planning.

Table 22-2: Sample Explanation of Hospice

Knowing that you wish to stay home and not return to the hosp

to refer you and your family to a program of care designed speci

and families in your condition, with your exact same desires

designed especially for people who are living with advanced il

home, and may need after-hour, on-call assistance to stay comf

Nurses are available 24 hours a day for support and guidance

ists, knowing how to help individuals and families be as comfor

as possible at home. This service offers a nurse who is an expert 

tom management, and knows how to prevent symptoms from ge

The nurse will help educate you and your family on what to 

Sometimes learning what is natural and expected can be very 

They also have a social worker who specializes in care of people w

with HIV for a long time. They provide support and referrals to com

as you need and desire. Home health aides are also trained to wo

weakness and advanced disease. They can assist with bathing, c

ens and other personal care several times a week if you desire. All 

are designed to support your comfort and confidence at home. A

include spiritual support, volunteer help, and bereavement supp

This special program is called hospice. We believe this progra

your needs at this time. If your needs change, and you no longe

support, you may be discharged. If you receive services, and yo

the type of care you want, you may be discharged at any time.

Sometimes, patients and families refuse hospice care at the time it 

frustrating for the referrers because they may want the patient to b

Chpt 22 1-17-03.p65 1456
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

that if hospice care does not feel right for them, they can go back to 

remind patients and family that HIV is an unpredictable disease, and th

hospice care is best to meet their needs, but if in the future they get st

need or wish the hospice’s services, they may be discharged. Giving pa

permission to think of hospice as a specialized care for their current 

care needs provides great relief since they may have only known hosp

you die,” and with HIV that is not always true. A gentle personalized ex

care option can often improve acceptance of such services. Care provi

acceptance of hospice is not the absolute goal of care planning. Assur

of viable care options that match their values, resources, and desires r

HOSPITAL DISCHARGE PLANNING

■ The decision to formally engage home care and hospice care service

course of a hospitalization. Although eligibility for palliative care can b

stage in the spectrum of HIV disease, HIV-related inpatient hospital a

one of the clinical markers of advancing disease. Prior to each hosp

developed chronic disabling symptoms or new onset symptoms that 

disease. Increasing fatigue, changing social support, and complex ho

quire reassessment during each hospital stay. Comprehensive discharg

task for promoting the continuum of care. Integration of HIV palliative 

postponed until patients are in the most terminal phase of life.

Elements of comprehensive discharge planning from the hospital se

assessment, education, support, and community referrals. Some of the

understanding the patient and family’s adjustment to illness; understa

nature of HIV; sensitivity for the patient witnessing other patients’ dec

infected partners; sudden acute, life threatening illnesses; fear of the u

others; and uncontrolled pain or other symptoms. Interdisciplinary pa

tion of patients and caregivers on important aspects of the patient’s c

tory, prognosis and direct care are predictors of improved patient and 

Patients’ resources may have drastically changed since their most re

The patient may no longer be able to care for himself and live independ

experienced a loss of housing, income, insurance benefits, and/or fa

awaiting the patient’s discharge may need increased assistance at hom

is why it is important to make a comprehensive assessment of new need

the plan of care prior to discharge. The revised discharge plan must be 

tient primary care providers and case managers so that they can reass

needs once the patient is home.

Families need to understand the seriousness of advancing disease and 

ited life span for their loved one. One of the major discharge planning 

that it is not always clear when someone is dying. Sometimes, even if 

Chpt 22 1-17-03.p65 1457
458 U.S. Department of Health and Human Services • Health Resources and Services Administ

as possible. Evenings and holidays are inappropriate times to discharge 

care unless thorough arrangements have been made regarding access 

equipment, supplies and agency personnel. Referrals to home nursin

vices should be made with much advance notice because it may requi

all services for inpatient teaching and home equipment.

ASSESSMENT FOR HOME CARE

■ One of the most important practical questions facing the patient 

team is inpatient staff, outpatient staff, or both) is “Can this patient 

home?” An assessment of the physical and emotional condition of th

understand what needs must be met. This is most often the responsib

physician. However, a comprehensive assessment for home care must 

approach in addressing several important issues (see Table 22-3):

• The patient’s mental capacity to make decisions

• The patient’s physical capacity to carry out activities of daily 

participate in care

• The caregiver capacity to provide support in the home

Table 22-3: Assessment of the Home Environment

1. Who in the home can assume primary responsibility as caregi

2. What is the patient’s level of ability in activities of daily living

3. Are family members or caregiver able to read and understand 

4. What is the family and patient’s understanding of, and adjustm

5. What is the potential impact of disclosure by the patient of H

members and other people?

6. Are there physical and mental health issues among other fam

caregivers? (i.e., Is this patient’s partner or spouse also HIV-in

drugs or alcohol, or physically or psychologically unable to me

will be placed upon him/her?)

7. Are medications, especially pain medications, safe from theft 

the home?

8. Do the family and caregiver have the capacity to maintain a s

environment?

9. Will the patient be able to access outpatient care from home? 

family be able to obtain medications and supplies at home?

Chpt 22 1-17-03.p65 1458
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

12. Is durable medical equipment such as hospital bed, commode 

oxygen needed in the home, and should they be in place prior 

13. Is the home setting appropriate for the patient’s stage of illne

(See also Table 22-5.)

14. What are the financial resources of the patient and family, an

resources changed dramatically since prior hospitalizations?

15. Have legal issues such as guardianship, living wills, health car

addressed and are they current? (See Chapter 18: Legal and F

16. What care options are there for children during illness and af

parent?

Having someone in the role of primary care provider in the home is ne

and assistance as well as to coordinate care with the home care or ho

and deal with changing aspects of patient care. Ideally, the primary ca

enough physically and mentally to provide personal care, food prepar

errand running, and household management, as well as be the primar

providers.

Additional considerations arise when planning for home care for infant

palliative care; see Table 22-4.

Table 22-4: Considerations in Planning Home Care for a Ch

1. Parents may lose social support from other parents of hospita

their child is discharged.

2. Parents may experience significant guilt for transmission of t

child.

3. When parents are infected themselves, questions of guardians

financial planning are more difficult.

4. Parenting skills may need to be refined. Often, for example, p

anticipatory grief need help in learning how to discipline thei

5 There is reduced cost of care at home.

6 Pain is the most common symptom across the spectrum of pe

7 There are forms of suffering other than pain in the dying child 

uncontrolled physical symptoms, guilt for making loved ones s

sicker, and lack of ability to mirror the activities of healthy pe

8 Care of the dying young is often complex and requires an inte

approach to care.6

Chpt 22 1-17-03.p65 1459
460 U.S. Department of Health and Human Services • Health Resources and Services Administ

Table 22-5: Persons for Whom Home Care May Be Inappro

1. Persons with diarrhea who are housed in single-room occupan

private bathroom or running water in the room.

2. Persons with significant weight loss living in places lacking co

storage facilities.

3. Persons requiring intravenous therapy who have neither a tel

refrigeration.

4. Persons who are non-ambulatory patients but live in building

broken elevators.

5. Persons living in high crime buildings or in homes where over

trafficking takes place in the presence of home care staff.13

6. Persons living in housing that is unstable, transient, or a “dou

7. Persons with previously stable housing that is jeopardized by 

disclosure of HIV status.

8. Persons living in homes in which confused or intoxicated indi

to weapons.

If family members have unrealistic expectations of the course of the 

that the patient should not be discharged from the hospital until their 

versely, the patient, family members and caregivers may be reluctant t

home from the hospital at all. Often this is due to specific fears that 

transition planning process (see Table 22-6). Some of these fears are re

rated with education and support.

Table 22-6: Common Caregiver Fears

1. That the health of the family or caregiver will suffer.

2. That the patient will be readmitted to the hospital and thereb

perception of the family’s ability to provide care.

3. That a crisis will occur at home when no trained professional 

4. That incontinence, sickness, or confusion will cause embarra

5. That the patient will be left out of discussions/decisions regar

6. That the loved one will die at home.

7. That the illness will have negative impact on the family, espec

patient’s desire to see them may be particularly strong at this 

8. That a diagnosis of HIV/AIDS will be disclosed to others.

Chpt 22 1-17-03.p65 1460
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

vided in the home. However, there are times when a patient’s need for s

the capacity of his or her home. The patient may live alone and not hav

may be overwhelmed; some people may not have a home to go to; and, s

may be difficult or impossible for providers to access.

The best outcomes in home-based care are attained when care is prov

others. Even under the best of circumstances, a caregiver needs a solid 

call on when needed. Although some families manage to mobilize last-m

the end-of-life is not a good time to make new personal connections or 

these instances, professional staff should plan for and assume an even 

In North America, one of the primary goals of palliative care is to sup

comfort of their own homes, and palliative care practitioners hold d

“gold standard.”16 However, there are many issues to consider in disc

consider the physical dependent care needs, and whether or not th

desire a home death. The physical and emotional devastation of adv

extraordinary demands upon families and our health care system in 

level of service required to support end-of-life care at home.17

Home Care

Home care is primarily rehabilitation focused. Skilled nurses provid

ited visits in the home, to monitor, instruct in care, and perform speci

under the direction of the primary physician (activities might include cha

and administering intravenous treatments, monitoring medication a

blood and specimens for laboratory analysis). Home health aides are 

with bathing and personal care (generally two-hour intervals several 

therapists are is available for gait training, instructing strengthening e

fer instruction to patient and caregiver. Social workers may be availa

assessment and referral for community services, benefits, financial ass

patient to extended care or residential assisted living.

It is important that families, patients, and providers have some crite

hospice agency. One of the greatest predictors of successful care is exp

need to know that the chosen agency can address anticipated, pred

disease, and will have knowledgeable responses to the unpredictable 

caregivers should know the number of years an agency has been in op

agency’s license, the agency’s membership in the state’s home care or h

accreditations held by the agency.

Chpt 22 1-17-03.p65 1461
462 U.S. Department of Health and Human Services • Health Resources and Services Administ

Hospice teamwork assists the patient and family to design a personali

gression. This plan will address preventing anticipated symptoms, clar

death, and related concerns. The focus on symptom control, educatio

the patient and his or her significant others as self-reliant and comfort

as they plan for approaching death. Care includes skilled nursing (pr

care (by home health aides), social work services, volunteer support, p

ment support for one year after the patient expires. Comprehensive s

design. Assessment of and support for physical, emotional, social, fin

pects of the patient and family’s lives are the priority concerns and fo

Traditionally, only clients who were no longer interested in measures t

eligible for this program. The unique challenges in predicting prognos

ment with advancing HIV disease have pressured some changes in the d

care. Specifically, the severity, complexity, and unpredictable trajectory o

the distinction between what was previously understood as curative ca

ered supportive palliative care.18,19,20 At one time, patients were asked 

medications, IVs, hospitalizations, diagnostic tests, and hopes for reco

responding unexpectedly to starting and withdrawing of aggressive ant

longed disease soliloquies, changing prognoses, and new hopes, hospi

to include more blended care.

Medicare Skilled Nursing Benefit versus Hospice Medica

For patients who have Medicare or Medicaid in States with the Medicaid 

hospice can be very complicated. (See Chapter 18: Legal and Financial 

tion about these sources of care financing.) Terminally ill Medicare or 

choose the Skilled Nursing benefit or the Hospice Medicare Benefit. 

Medicare Benefit, the patient designates the hospice to assume the fi

all care related to the terminal illness. This obligation provides all the 

care as well as durable medical equipment, palliative medications, r

nursing care if needed.

There continues to be ongoing debate regarding the hospice agency

expensive viral suppressive therapies. Although many of these therapi

relief, their cost would exhaust more than the per diem rate of hospic

Ideally, every hospice could benefit from dual licensure as a home ca

An agency licensed for both home care and hospice has more flexibility 

for patients who are continuing to blend palliative care and support with f

This allows the hospice to bill as home care skilled intermittent visits 

home health aides, as well as other therapies as ordered. Social services can 

number of visits allowed. Additional visits will not be billable, unless 

sources of funding such as end-of-life care within Ryan White CARE Act 

Chpt 22 1-17-03.p65 1462
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

2. The patient is on expandedaccess medications, has chronic dis

experiencing end-of-life distress (patient or family), impaired qu

advanced HIV, and/or a life-limiting AIDS-related condition such 

current/resistant opportunistic infections, co-infections with oth

tions such as Hepatitis C, and/or end-stage organ failure.

3. The patient has become tired of years of complex medication and 

failing strategies, and wants a simpler and higher quality of life.

4. The patient is living with advanced disease and the after-hour cal

can be met in the outpatient setting. This may be for symptom 

The patient who has come repeatedly to the emergency room m

home assessment, education, and support that the hospice offer

gency services to address anticipated changes.

Alternative Placements

When patients do not have a home to return to, or the necessary 

transfer to a residential facility can be a welcome option. Sometimes t

not a safe place for the patient to live alone. There are several alterna

Depending on the available resources in each healthcare provider’s r

pendent living residential facilities may be available. Skilled nursing h

facilities may also be available depending on the patient’s location, 

benefit coverage.

Residential Care

Residential housing designed for people with HIV is often a welcome al

ized care facilities. A variety of housing models have developed over t

HIV. Although there are several common types of residential models, 

evaluate support resources available to the patient in each type of ho

Scattered-site apartment programs for individuals and HIV-infected 

many locations throughout the U.S. These residences are best suited fo

still able to maintain a high level of independent functioning.21

Long-term Care

The most common reasons patients are admitted to long-term care 

of medical therapy; prevention of unnecessary hospitalizations w

available; continuous care needs including dementia-related cognitiv

ability; terminal care when home settings are not available;22 and, inst

ment bias since long-term care is less expensive than acute inpatient 

Chpt 22 1-17-03.p65 1463
464 U.S. Department of Health and Human Services • Health Resources and Services Administ

resident days with this coverage because it is the most lucrative for t

This may offer patients more care therapies such as hydrating IVs, pa

physical therapy.

The skilled nursing facility, the subacute long-term care option, was de

atric populations, to serve patients who required skilled nursing care b

acute hospitalization.24 Skilled nursing care may be more accessible fo

need of physically supportive care. The increasing chronicity of HIV d

peutic agents and neuropsychiatric co-morbidities will most probably in

term care. This level of care may be increasingly important not only in 

length of stays but in creating a bridge to community-based residentia

chronic disease phase of the AIDS epidemic.24

Child and Adolescent Care

Children and/or adolescents who require a transitional phase of stabili

from the hospital have intensive medical, familial, and social needs. (S

of Children and Adolescents.) Chronic care for pediatric AIDS patien

orientation within each treatment phase of care including long-term 

facilities. An overarching problem is that the U.S. lacks a national care 

and adolescents needing such care.24

Helpful Placement Strategies

Interdisciplinary team social workers will generally be the best resour

A well-informed social worker will know about admission criteria and p

thorough assessment of the patient’s social history should reveal any in

ence housing placement, such as how well the patient handles confli

grief. Equally important, providers should be knowledgeable about the 

tions, mental health, substance use, and anti-social behaviors such as co

relations, public masturbation, stealing, or personality disorders caus

ting and chaos.25

Regular providers of HIV care would greatly benefit from visits to the

about the physical settings and support services. Recent consumers o

vices can also be reliable informants.

Encourage the family to visit potential settings and determine which fa

in terms of location, attitude of care providers and culture sensitivity.

PLANNING FOR DYING

■ Planning for death and dying is an important part of caring for the H

or her family. Conversations on this topic can be particularly challen

stance of the issues that must be addressed as well as the difficulties 

Chpt 22 1-17-03.p65 1464
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

or in an institutional setting? Who does he or she want as a health c

patient want to act as guardian for his or her children? Who will care f

want to be with them at the end-of-life? One of the greatest losses hum

of-life is the loss of autonomy. When it is possible, therefore, to give a 

seemingly trivial matters, it is important to do so.

Developing a realistic understanding of the possible ways in which dy

the likelihood of families making choices consistent with their stated 

viders can support families by assisting them in visualizing the dying an

broad ways that are meaningful to the patient.26

It is particularly important that family members have a clear understa

to do, whom they can call, and where they can turn when death is imm

not clearly understood, caregivers may yield to the impulse to call an 

patient to an emergency room. This risk is increased if home health aid

sionals do not clearly know the patient’s wishes. It is, therefore, a g

written summary of the patient’s desires, along with copies of pertine

prominent place near the bedside (see Table 22-7).

Caregivers should be encouraged to discuss with their doctors and n

signs they can expect and what to do when these occur. A clear plan o

symptoms and signs should be developed in consultation with the int

ahead of the time it may be needed. It is most helpful to make sure tha

manage these symptoms are handy and that a list of all medications is k

an easy-to-access list of important phone numbers (doctor, hospice, nur

should be maintained so that, in the event of clinical deterioration, co

Table 22-7: Important Documents to Keep Updated and Re

1. Living will

2. Durable power of attorney or health proxy documents

3. A simple, clear statement of what the patient desires to be do

emergency or crisis (i.e., do or do not call 911)

4. Important phone numbers (friends, family, clergy, doctor, nu

care agency)

5. Vital statistics (full name, date of birth, Social Security numb

name, place of birth)

6. Health insurance and other financial documents

7. Other important documents such as tutorship papers, bank an

safety deposit information

8. Burial policies

Chpt 22 1-17-03.p65 1465
466 U.S. Department of Health and Human Services • Health Resources and Services Administ

expectations, preparing them for anticipated physical changes, and supp

(See Chapter 20: Care for the Caregiver.)

Ideally, the education of caregivers should begin during clinic or hospital 

assumes full-time responsibility for care. The education of caregivers an

include establishing and agreeing on the overall goals of care, the like

the role caregivers play in end-of-life care. Families need to know gene

symptom management. This includes learning to take symptoms serio

the patient expresses discomfort, being knowledgeable of treatment op

whether interventions have provided relief. Family members also nee

themselves appropriately and knowing what sorts of situations requi

health care provider (see Table 22-8).

A patient with advancing HIV can experience numerous symptoms re

medications, HIV-related infections and conditions, and pre-existing c

sociated with advanced HIV disease include, but are not limited to, th

• Symptoms associated with acute retroviral syndrome

• Oral changes

• Neuromuscular and neurological changes

• Pain in multiple sites from different sources

• Increasing fatigue

• Fevers and night sweats

• Changes in sleep patterns including insomnia

• Anorexia and involuntary weight loss

• Diarrhea

• Skin changes including rashes, itching and edema (see Chap

of Skin Breakdown)

• Shortness of breath, cough and congestion

General symptom control at the end-of-life should focus on comfort issu

breathing, dyspnea, and restlessness.29

Chpt 22 1-17-03.p65 1466
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

mediately if this change in condition was not

anticipated.

Depending on the patient’s desires, many of

these symptoms can be managed comfortably

at home.

If a family is terribly frightened by these

changes, they may choose emergency or 911

assistance.

• Falling

• Seizures

• Fainting

• Mental status cha

loss and personal

associated with d

creased supervisio

as soon as a chang

• Difficulty swallow

• Difficulty with uri

• Severe or acute ne

• Chest pain

• Bleeding (rectum

blood, blood in urin

liver disease condi

bleeding)

Urgent conditions indicating need for prompt

reassessment by home-based care, hospice or

clinic staff within 24 hours

Most of these symptoms can be comfortably

managed at home with adjustments to medication or treatment plan.

If travel to clinic setting for re-evaluation is

without undue strain, patients may desire to

go to clinic setting for assessment.

• Diarrhea (five tim

five days)

• Persistent headac

over-the-counter m

• Fever over 101° fo

• Dizziness

• Uncontrolled chro

• Visual changes (i

floating spots, loss 

• Persistent cough

• Nausea and vomit

• Rashes and skin c

Non-urgent conditions that require follow-up

attention by the primary care provider but can

wait more than 24 hours (Note: family should

call clinic and arrange follow-up appointment

within the next two weeks)

• Uncontrolled weig

anticipated with d

advanced disease

• Persistent insomn

• Any other symptom

client

Chpt 22 1-17-03.p65 1467
468 U.S. Department of Health and Human Services • Health Resources and Services Administ

important component of successful discharge planning. Increased car

dressing anticipated symptoms can ease caregiver burden and incre

both the patient and the caregiver.

As someone approaches the living-dying phase, families acquire additi

reorganize the family in order to overcome role strain.30 This include

the household/family leadership order. For example, the caregiver mu

life as well as become the patient’s bill-payer, personal shopper, and ch

as the patient’s primary social contact and health care coordinator, a

practiced or comfortable role for the caregiver. All the while, family ca

the imminent separation from the dying person, and possibly their ow

Most importantly, caregivers need to maintain a sense of competen

cannot be rescued from feeling helpless in the quest to keep a loved on

them in feeling that what they can do is helpful and meaningful.12 This 

tance with developing meaningful tasks and integrating palliative ca

needs advance, and referring patients and families to hospice care (se

Table 22-9: Important Comfort Strategies to Teach Lay Care

Lay caregivers must be as confident and as competent as possible with 

gies, because in the home setting they will be alone with the patient t

These end-of-life-related comfort strategies should be demonstrated f

stood by lay caregivers before they take on their care responsibilities:

Give pain and other symptom control medications

Caregivers must be instructed in proper administration and dosing 

tom management medications at scheduled times to keep their lov

possible. Caregivers should also be instructed in administering rescu

between long-acting medications.

When current regimens are not meeting the needs of ongoing com

should notify their home or hospice nurse to arrange changes in d

promote patient comfort at all times.

Caregivers should be informed of the benefits of regular dosing; h

should dispel caretakers’ myths or concerns about addiction, tolera

medications that could inhibit their interest in or ability to adhere 

Keep clean and dry

Keeping bed linens, pillows, and clothing dry and clean helps pro

and dignity as well as preventing decubitus ulcers. Freshening linen

light perfume can enhance the olfactory and tactile sense of cleanl

Chpt 22 1-17-03.p65 1468
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receiving bath care will enhance the patients dignity and emotiona

Care for mouth and lips

When weak or short of breath, patients will breathe through their 

relaxed and open. Because this tends to dry out the oral mucosa an

brush the patient’s teeth and/or rinse their mouth and rub a cool mo

and apply moisturizer to their lips regularly.

Moisten dry eyes

When the body weakens, eyelids become more relaxed and people w

open and rarely blink. This is very drying and sensitive to eye tissue

Caregivers should be instructed to avoid directing the breeze of fans

ing toward the patient’s open eyes. Application of 2 to 4 drops of ar

two hours will add gentle comfort.

Reposition and turn

As disease advances and bodies weaken, it becomes more difficult 

turn themselves. Caregivers can be taught to use a draw sheet fo

repositioning.

Monitor bowel movements

Even though individuals may eat little as they get closer to the end-o

to remember that bodies continue to make waste. Keeping track o

movements and notifying the visiting nurse if a patient has not had 

least 3 days is important for the person’s overall comfort.

We must remember that the intimate memories of direct caregiving by 

everlasting for the survivors. Informing family caregivers of the natu

comfort strategies will improve caregivers’ satisfaction with their assi

responsibility for caregiver instruction is shared throughout all settin

APPROACHING DEATH

■ Certain active signs and symptoms of approaching death may be see

and hours prior to a natural and expected death. (See Chapter 24: Me

Life.) Specifically, pulmonary aspects of the dying process call for care

patient’s distress and discomfort. (See Chapter 6: Pulmonary Sympt

know that the natural changes as their loved one gets sicker and appro

the following:

• Reduced intake and interest in food and fluids

• Decreased interest and attention

Chpt 22 1-17-03.p65 1469
470 U.S. Department of Health and Human Services • Health Resources and Services Administ

• An energy surge

Reduced Intake and Interest in Food and Fluids

Caregivers should be taught not to force food or drink into the patie

guilt to manipulate the patient into eating or drinking. Small chips of ic

refreshing so long as the patient can swallow without difficulty. If the 

small frequent feedings of desired foods and fluids may be more manag

large meals. The team nutritionist can be very helpful in teaching tech

comfort, nutritional quality, and feeding assistance with swallowing c

families and caregivers need to know that these changes do not cau

occurs medical attention is required.

Decreased Interest and Attention

As the body weakens, a person’s involvement with other people, pets

ests may decrease. Individuals may lose interest in favorite activities o

They may want to be alone or with just one person at a time or ask th

usual. Caregivers need to be reminded that the patient is easily tired 

hard for caregivers when they feel shut out, they can be helped to und

from life is a natural part of preparation for death.

Reduced Strength and Ability to Move

Families and caregivers need to know that it is natural for a pati

require increasing amounts of rest to perform even simple tasks. It is 

supervise all of the patient’s activities to promote safety.

Changing Sleep and Rest Patterns

As an individual gets closer to the end-of-life, it is normal for day an

to reverse. Rest is important for everyone. If the patient is unable to 

pain should be assessed and health care providers should be notified. W

patients may sleep with their eyes and mouth open and appear unrespo

understand that this is expected and that, at these times, their role sho

to “being with.” This means that families should sit or rest near the

hands, apply lotion to their skin, soothe their faces with a warm mo

converse as the patient would expect them to do.

Most importantly, caregivers should not attempt to awaken the patien

loudly to them. They should reintroduce themselves to the patient upon 

asking “do you know who I am?” Loved ones experience great pain whe

and patients may withdraw from interactions if they fear they are cau

responds less, families should continue to speak directly and norma

patient can hear them, as hearing is the last of the senses to be lost.

Chpt 22 1-17-03.p65 1470
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or resting area with pads will prevent frequent linen changes and soil

gloves when handling soiled clothing and linens, and washing hands wi

and after personal care, should be demonstrated and instructed. Care 

the patient clean and comfortable. The home care or hospice nurse sho

cleanliness, universal body fluid precautions, skin care, and monitorin

Described “Supernatural” Experiences

It is common for many people who are getting closer to dying to 

feeling that they have been in contact with people who have died befor

riences are described as “So and so came to see me” or “I just saw so 

may not seem believable to many people, they feel very real to the pe

For people who have significant anxiety about their approaching death

they may express feeling less frightened. Often people are reported 

feeling calmer with less emotional strain or struggle after describing t

Energy Surge

It is very common for caregivers to witness a predictable, significan

restlessness at the very end-of-life. This may occur after a period of ext

sleeping, then suddenly the patient becomes VERY alert. The patient 

or sit upright in a chair, when they have not done so for days or weeks. 

their clothes off and on when they normally were quite modest. The

naked at the end of the bed. Agitated “picking” at their clothes, bed line

a sign of this stage. Other times the patient may request specific food, a

when they have not eaten more than a spoonful of anything for days.

Often this surge of energy confuses and sometimes frightens the indiv

tient. When not educated about the possibility of it occurring, loved 

surge of energy as renewed strength and an answer to prayers for rec

families to be educated about this possibility, because it is a potential s

within the next 24 hours.

PEOPLE WITH SPECIAL NEEDS

Women

The greatest percentage of HIV-infected women are mothers of youn

of ten years. Often women learn of their HIV infection during their pre

they immediately have pregnancy needs as well as needs regarding the

of HIV transmission to their unborn child, risk reduction education, an

other children being HIV-infected.

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472 U.S. Department of Health and Human Services • Health Resources and Services Administ

may push her own physical, emotional and spiritual limits for the sake o

taining her primary parental role.

Her own impending death critically affects a woman’s caregiver role

children behind, she may be leaving them in the custody of a sick 

parent, or deciding to separate them among family members. She may e

sense of responsibility, fear of rejection, guilt about transmission of 

guilt about leaving her family at a young age. There often may be great 

needs have increased.

The needs for women to have supportive housing and to be able to li

long as possible are increasing. When women are unable to handle th

unlimited visitation by their children needs to be assured. Fear of los

dren frequently causes women to delay acceptance of hospice service

stages of life. (See A Clinical Guide to the Care of Women with HI

women.)

Children

Children continue to be born infected or to contract HIV at early ag

Care of Children and Adolescents.) Children at the end-of-life have sp

ning care across the spectrum of inpatient and outpatient services, a 

family at home helps determine suitability of the home setting as w

family to participate in care.10 Before discharging a child to home, he

assess the family’s understanding of HIV infection and the child’s illnes

the invidivuals in the family who are aware of the diagnosis. Also, pla

home needs of uninfected siblings including privacy, attention, role c

grief.

Surrogate caregivers are needed for infected children when their paren

already has died. Whenever possible, family surrogates are ideal careg

malize the child’s life to the greatest degree, facilitate visits of their p

help the child keep fond memories of parent(s). However, extended fa

sume such child care responsibilities, because of problems such as livi

unfit housing, or caring for other dependents or relatives.

Often the medical staff has come to accept the child’s impending dea

favor heroic lifesaving measures. Conversely, families may accept imp

medical team. When families and health care providers are in conflict 

child in advanced stages of HIV, it can help to consult a facilitator who 

the patient’s care, to help family and team reach a consensus.10

For children with advancing HIV, the goals of case management are 

hospital stays, prevent future hospitalizations, promote alternative re

Chpt 22 1-17-03.p65 1472
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Family-oriented case management is the optimal support. This includ

ventions for the entire family as a unit. Family case management, sim

agement, includes the multifaceted layers of practical assistance with s

and social adjustments, and crisis intervention.

Rural Families

Families living with advanced HIV disease in rural communities h

cluding geographic isolation and added caregiving responsibilities. W

point of disability, the entire family structure feels the strain of increa

sources that are taken for granted in urban settings are scarce in ru

caregivers as well as patients and their families are often isolated from 

help care for themselves.32

The barriers to advanced and palliative HIV care in rural communitie

clude the following:

• Scarce home health and hospice agencies, with fewer staff t

agencies to provide home health, social work or respite serv

• Scarce resources resulting in fragmentation of care

• Lack of professional emergency assistance due to geographi

• Shortage of mental health professionals

• Long distances to medical facilities such as clinics, hospital

homes

• Lack of health care professionals with advanced HIV care ex

• Fewer HIV-related services

• Community social stigma toward those living with HIV

• Home care and hospice agency reluctance to become known 

provider, fearing loss of other clients, staff, or community fu

• Lack of transportation to needed services such as food, case 

counseling, group support, day care and respite services 33

• Family financial strain due to limited work resources or land

income

Poor rural families can live with extraordinarily limited resources. S

homes without running water, telephones, electricity, indoor plumbing

Homes may have dirt floors or be overcrowded single-room houses or s

tive for severe weather conditions. Incest, substance abuse and alcoho

stressors in remote communities. Cultural sensitivity must be develop

Chpt 22 1-17-03.p65 1473
474 U.S. Department of Health and Human Services • Health Resources and Services Administ

vices of the local hospice and the HIV agencies. The more remote the a

of disclosure within the surrounding community. Even if only one pers

the stigma can remain with that family long after that person’s death. 

confidentiality of their clients with the utmost vigilance for these reas

Families living in remote rural areas often grieve in isolation. It is imp

to refer the family to hospice care (prior to their family member’s dea

bereavement support.

Strategies to improve access to HIV palliative care in rural areas inclu

• Develop a community assessment of local resources and a n

through the closest university.

• Advocate for increased services to meet the unique needs of 

communities. For example: Arrange respite care or voluntee

“care for the caregiver” activities, using church groups or se

centers.

• Educate family members and caregivers on the basics of HIV

and advanced care needs and respect for confidentiality.34

• Develop regionally specific cultural orientation for care prov

familiar with subcultural traditions.

• Develop strategic rural care plans with other experienced ru

Urban Poor

Similar to the rural poor, individuals and families living in urban 

extreme situations of despair. Common stressors include small living spa

and lack privacy, including lacking individual sleeping space. Many f

phone, electricity, running water, and shelter from extreme climate co

Crime is a daily occurrence in impoverished urban communities. Theft 

vehicles, furniture, entertainment items, and food can occur at any tim

lies often fear that flying bullets or stabbing will take their lives bef

advance. For many people, HIV is not “the” significant concern unti

ability to survive within these poor conditions.

Determination of suitable housing is difficult for many very poor famil

fact that they have a roof over their heads, running water, and intermi

great improvement over previous conditions. It is critical to remember 

had their children removed from their homes due to determinations o

ents with advancing HIV, holding onto their home with their childr

priority. At the same time it is also the responsibility of the palliative ca

tive services if there is a concern about abuse or neglect of any famil

Chpt 22 1-17-03.p65 1474
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tients identified to have TB need to be linked with appropriate surveil

members of their households tested or evaluated.

We need also to be mindful of further barriers to care that exist for the i

such as the following:

• Transportation may be limited in areas of high crime.

• Only a limited number of home-based care agencies may ser

home setting, and agencies may need protective services to 

care providers on every visit.

• After-hour call services may be limited to phone assistance, 

safer areas may receive a home visit at any time.

SUMMARY

■ Patients and families need reassurance that their interdisciplinary 

ested in their quality of life, not quantity of life without quality. We m

quality of life as being free of distressing symptoms, and offer patient

independent in their lives and care as possible. With comprehensive 

mote patients’ ability to achieve meaningful goals and take care of pers

end of their lives.

Deliberate, informed, and conscientious practical actions should be 

the interdisciplinary team role and function, hospital discharge plan

assessment, and home care and hospice planning. These components a

ing a continuum of care and support for people with HIV and their fam

Chpt 22 1-17-03.p65 1475
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1. Martin DK, Thiel EC, Singer PA. A new model of advance care planning: Observ

Arch Intern Med 159:86-92, 1999.

2. Miles SH, Koepp R, Weber EP. Advance end-of-life treatment planning. Arch In

3. Singer P, Martin D, Lavery J, et al. Reconceptualizing advance care planning fro

Archives of Internal Medicine 158: 879-84, 1998.

4. Babcock JH. Discharge planning in acute care. In Aronstein DM, Thompson BJ

A Practitioner’s Guide. New York: Harrington Parker Press, 89-100, 1998.

5. Cummings SM. Adequacy of discharge plans and rehospitalization among hospit

Health Soc Work, 24:249-59, 1999.

6. Belasco JB, Danz P, Drill A, Schmid W, Burkey E. Supportive Care: Palliative ca

and young adults – Mode of care, interventions and cost of care: A retrospective 

J Palliat Care 16:39-46, 2000.

7. Institute of Medicine. Introduction, guiding principles. In Field MJ, Cassel CK, e

Improving Care at End of Life. Washington, DC: National Academy Press, 22-3, 

8. Newsham G, Sherman DW. Palliative care: Pain and symptom management in pe

Nurs Clin North America 34:131-45, 1999.

9. Thompson BJ. Case management in AIDS service setting. In Aronstein DM, Th

HIV and Social Work: A Practitioner’s Guide. New York: Harrington Parker Pre

10. Boland M, Rothpletz-Puglia P, Oleske J. Infants and children: HIV disease care 

Flaskerud T, eds. HIV/AIDS: A Guide to Primary Care Management, 4th ed. Ph

65-97, 1999.

11. Bull MT, Hansen HE, Gross CR. Predictors of elder and family caregiver satisfac

J Cardiovasc Nurs 14:76-87, 2000.

12. Rose A. Back to the future: Survival uncertainty and hope. In Aronstein DM, Th

HIV and Social Work: A Practitioner’s Guide. New York: Harrington Parker Pre

13. Schmidt J, Crespo-Fierro M. Community based and long term care. In Unquarsk

HIV/AIDS: A Guide to Primary Care Management, 4th ed. Philadelphia: W.B. Sa

14. Doyle D. Domiciliary palliative care. In Doyle D, Hanks GWC, McDonald N, eds

Palliative Medicine, 2nd ed. Oxford: Oxford University Press, 957-73, 1998.

15. Prichard RS, Fisher ES, Teno JM, et al. Influences of patient preferences and lo

characteristics on the place of death. JAGS, 46:1242-50, 1998.

16. Fields D, James N. Where and how people die. In Clark D, ed. The Future of Pa

and Practice. Philadelphia: Open Press, 6-29, 1993.

17. Stajduhar K, Davies B. Death at home: Challenges for families and directions fo

14:8-14, 1998.

18. Alexander C. Palliative and end-of-life care. In Anderson J, ed. A Guide to the 

with HIV, U.S. Department of Health & Human Services, Health Resources & Se

343-76, 2000.

19. Foley FJ, Flannery J, Graydon D, Flintoft G, Cook D. AIDS palliative care—chal

paradigm. J Palliat Care 11:19-22, 1995.

Chpt 22 1-17-03.p65 1476
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23. Zeran J, Stearns S, Hanson L. Access to palliative care and hospice in nursing h

2000.

24. Ruch LM. Long-term pediatric care in the managed care environment. Nurs M

25. Austin JS, Smith M. Housing for people with HIV. In Aronstein DM, Thompson 

Work: A Practitioner’s Guide. New York: Harrington Parker Press, 509-23, 1998

26. Bern-Klug M, Gessert C, Forbes S. The need to revise assumptions about end-of

work practice. Health Soc Work 26:38-48, 2001.

27. Sherman D. Palliative care. In Kurton C, Talotta D, Zwolski K, eds. The Handb

St. Louis, Missouri: Mosby Yearbook Inc., 173-91, 2001.

28. Kemp C. Acquired immunodeficiency syndrome. In Terminal Illness: A Guide t

Philadelphia: T.B. Lippincott, 261-80, 1995.

29. Lichter L. Home care in the last days of terminal illness: Relief of physical symp

Consultant 7:8-14, 2000.

30. Stewart BM. End-of-life family decision-making from disclosure of HIV through 

Sch Inq Nurs Pract 8:321-52, 1994.

31. Fabius, R. The fundamentals of pediatric patient and disease management. Pedi

27:215-23, 1998.

32. Cuellar N, Butts JB. Caregiver distress: What nurses in rural settings can do to 

Nurs Forum 34:24-30, 1999.

33. Heckman TG, Somlai AM, Peters J, Walker J. Barriers to care among persons liv

and rural areas. AIDS Care 10:365-75, 1998.

34. McCloskey J, Bulechek G. Nursing Interventions Classification (NIC). St. Lou

Mosby Yearbook, Inc., 1996.

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Chpt 22 1-17-03.p65 1

478
U.S. Department of Health and Human Services • Health Resources and Services Administration 

Frederick J Meyers, MD, and John F Linder, MSW, L

INTRODUCTION

■ Well-informed patients can optimize their quality of life through partne

in clinical decisionmaking. This collaborative process is particularly im

advanced AIDS and their families. This chapter assists the clinician in 

balance between disease-directed therapy and comfort-centered care 

advanced disease.

Specific clinical events, presented in Table 23-1, should, at a minimum, pro

of the goals of care, and may trigger a shift in emphasis from cure or disea

tion. Acknowledging and discussing with the patient these transitions in 

implications is integral to quality patient care. Failure to do so adversely af

and often leads to hopelessness, depression and amplification of physica

These discussions with patients are extremely important interventions a

communication skills. (See Chapter 21: Patient-Clinician Communicatio

QUALITY-OF-LIFE-BASED DECISIONMAKING FOR

PATIENTS WITH ADVANCED AIDS

■ Many patients receiving highly active antiretroviral therapy (HAART

provement in their clinical condition. Others are not as fortunate. Some 

(usually neurologic, cognitive and/or motor) and live at a level of consider

ity.1, 2, 3 Others experience persistent treatment toxicities that make rem

or impossible. Moreover, even for those who do experience improvements 

not necessarily an improved quality of life in areas other than depression.

burden of treatment may begin to outweigh its benefits. New therapies inc

longer, but often with diminished physical or cognitive capacity and onerou

toms.3, 4 This is particularly true with second-line and salvage therapy. 

longer in this diminished state is less desirable than a shorter life.

Providers must, therefore, elicit the patient’s view on the key physical, medic

elements that define a good quality life, the life worth living. Providers mus

patients’ perspectives may differ sharply from their own, and understand t

herent in these differences. (See Chapter 20: Care for the Caregiver and Ch

Sentinel Events Triggering Discussion

About the Advanced AIDS State

The occurrence of the events presented in Table 23-1 often indicates 

foreseeable future and should cause the provider to explicitly review prog

perspective and expectations with the patient and family.

Chapter 23 1-17-03.p65 1479
480 U.S. Department of Health and Human Services • Health Resources and Services Adm

Relative and Absolute Antiviral Drug Resistance

Antiviral drug resistance is more likely in patients with CD4 less than 20

adherent to the initial drug regimen, and in patients on second and thir

In a group of 70 protease naïve patients with advanced AIDS started on HA

rate was 40% and mortality rate was 16% in three months. Brechtl’s stud

associated with nonadherence and, while depression and weight improve

of life did not.1

Freedberg developed a statistical model of AIDS survival which showed si

overall survival and quality-adjusted years of life with adherent HAART th

relatively short survival for patients with advanced AIDS. A graphic repres

cal patients is shown in Figure 23-1. Estimated survivals are shown in Ta

Relative and absolute antiviral drug resistance to HAART, 

investigational trials

• Poor adherence to HAART

• Progressive cachexia not secondary to HAART lipodystrophy

• AIDS-related malignancy including CNS malignancy and vis

• Progressive multifocal leukoencephalopathy

• Advanced liver disease

• Intensive care hospitalization / mechanical ventilation / Pn

pneumonia

• Drug-resistant TB

Table 23-2: Survival with and without HAART

Survival without S

CD4 cells/mm3 Therapy (yr) 

50 1.39 

200 3.33 

500 7.05 

Source: Freedberg KA, et al. The cost effectiveness of combination antiretroviral thera

N Engl J Med, 344:824-31, 2001. Copyrighted © 2001 Massachusetts Medical Society. Al

with permission.

Chapter 23 1-17-03.p65 1480
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Source: Freedberg KA, et al. The cost effectiveness of combination antiretroviral therapy 

344:824-31, 2001. Copyright © 2001 Massachusetts Medical Society. All rights reserved. 

Chapter 23 1-17-03.p65 1481
482 U.S. Department of Health and Human Services • Health Resources and Services Adm

Second Line, Salvage, and Investigational Therapy

There are data in a study by Durant, et al., suggesting that second line th

guided by genotype testing, is valuable in increasing longevity.7 Indeed, fo

pression on second line therapy may last for years. This same study, how

substantial number of patients progressed despite therapy or were intol

Clinical Trial Group (ACTG) study of response to second line treatment fu

ond line treatment is a marker for advanced disease.8

 Institution of se

therefore prompt recognition that, while another remission is possible, 

immediate and is probably inevitable.9

 Thus, conversations about the e

palliative care are indicated when second line therapy is considered or in

relevant as patients undertake third and fourth line therapy after multipl

The outlook for patients on salvage therapy or those participating in clinic

tion of all conventional regimens is very poor. Initiation—indeed, cons

investigational therapy under these circumstances carries with it the im

goals and burdens of treatment with patients and to explore the benefits 

liative care. These discussions may inform decisions about stopping or decli

therapy or prophylaxis against or suppression of opportunistic infections, 

goals of treatment and the perceived effects of continued disease-directe

• Clinical Ethics and Practice in Salvage and Investigat

The decision to continue second line, salvage or investigational therap

psychological implications which can complicate discussions about p

rected care.

Although cancer and AIDS differ in many ways, the experience with canc

cian-investigators.

Patients who enter investigational cancer trials participate in part beca

such as disease and functional criteria. Many advanced stage cancer pat

to participate in cancer clinical trials are highly motivated and feel that 

best course for them. Patients are also influenced by their physician

altruism.10, 11, 12

These patients often expect a response to therapy, a reduction in sympto

creased quality communication with their physician.11 They equate therap

quality of life and do not consider any other options or quality of life ram

therefore, is not a consciously considered option for many patients with 

enrolled in cancer clinical trials, and is not consistently offered. Canc

clinical trials overestimate their survival, making these patients more lik

extending therapy over palliative care.13

Chapter 23 1-17-03.p65 1482
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Furthermore, systemic barriers obstruct palliative care program partic

Impediments dissuade programs from informing prospective patients, th

The added regulatory barrier that de facto prevents patients receiving dise

even being referred for hospice care15 exacerbates dissonance between di

tive approaches. Non-viable financial requirements argue against simulta

mental to clinical research, to informed consent, and to best patient ca

programs are required to absorb costs associated with disease-directed t

the cost of treating patients’ side effects from investigational therapy.

Consequently, when investigational therapy is completed, patients are o

patient and loved ones have little opportunity to address end-of-life tas

patient and family have focused often on the disease-directed therapies 

life issues and palliative care.16

The perceived dissonance between the goals of disease-directed therapy a

patient and physician reluctance to discuss concurrent application of bo

and palliative care. For the patient with advanced AIDS, participation in 

be a barrier to effective symptom management or intensive emotional sup

quality of life should not preclude clinical trials participation.

Adherence

Another sentinel event that appropriately triggers a patient/provider rea

treatment is non-adherence to therapy. Current HAART regimens are c

tinely expected to ingest between 6 and 20 pills a day, often on bid or t

significant dietary restrictions.

Patients experiencing virologic and clinical failure despite protease inh

into two categories: those treated over an extended period of time with 

agents, and those whose adherence to a HAART regimen is inadequate to 

Adherence research in other diseases with significantly less demanding r

levels of fully adherent behavior as low as seven percent.17, 18 Furthermore

with different long-term medication regimens for different illnesses in 

converge to approximately 50%.”19

However, it should be noted that adherence rates vary greatly depending 

ology. Moreover, adherence distribution curves are often U-shaped (not bel

close to one third of patients are highly adherent, roughly one third are f

and the remainder fall in the 20%-to-80%-adherent range. This renders m

mately 50%” figure cited above.

Adherence rates with chronic conditions also decline over time when re

80% rate of adherence, often adequate though not ideal in managing oth

for effective HAART.20, 21 Several investigators have demonstrated a preci

pression with each 5% to 10% decrement in adherence.5, 22-25

Chapter 23 1-17-03.p65 1483
484 U.S. Department of Health and Human Services • Health Resources and Services Adm

experienced, beliefs about treatment, access to care, venue of treatme

medications and others.5, 26, 27 Several of these factors, while intuitively a

lesser adherence, do not bear out empirically. Furthermore, physician 

ence success or failure is demonstrably poor.

Current or prior substance use, poverty, illiteracy and alcohol or drug add

to predict poor adherence, are not in fact, significantly associated with a

concluded in a 2000 study, “not adhering to treatment regimes is so widesp

of sociodemographic variables is reliably predictive of patients’ not fol

Depression and active alcohol abuse are the only two factors consistent

deleterious effect on adherence. Scrutiny of most other characteristics yi

argues convincingly for approaching the issue of adherence with care an

basis. Several strategies to improve adherence have been studied and ca

setting.24, 26, 29, 30

Cachexia

AIDS-associated cachexia syndrome reflects the uncontrolled inflamma

virus.31 Oversecretion of inflammatory cytokines produces pathologic c

catabolism and weight loss. Pharmacologic appetite stimulants can lea

enhance the patient’s sense of well-being, but survival time is not length

In advanced AIDS, symptoms of hunger and thirst are reduced or absent

and even dysgeusia (“food tastes bad”). Caregivers frequently respond b

times in concert with physicians, advocating for enteral or intravenous a

mental feedings are toxic, do not prolong life and are not consistent with 

lines or high quality of life. Some reasons not to artificially feed a patien

presented in Table 23-3.34

Table 23-3: Arguments against Artificial Feeding in Advanced A

• Does not increase survival

• Promotes suffering due to aspiration, diarrhea and abdominal p

• Can be withheld, as can hydration, according to U.S. Supreme 

• Is inconsistent with some religious and secular values

• Distracts family from issues of emotional support, completion 

other end-of-life tasks

Source: Gillick MR. Rethinking the role of tube feeding in patients with advanced dementia. 

Eating is often equated to fundamental caregiving, and offers opportuniti

sharing. Health care providers can help caregivers and patients identify a

as life review, storytelling, family outings, cards and games, reading. Time 

Chapter 23 1-17-03.p65 1484
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Several cancers are now AIDS-defining illnesses including Kaposi’s sarc

lymphoma, and invasive cervical carcinoma in women. The diagnosis an

nancies are identical to diagnosis and staging in the HIV-negative patien

is worse.

• Kaposi’s Sarcoma

Dermatological KS often responds well to treatment, whereas visceral KS

tract, is not curable. Although some patients may obtain short-term control 

chemotherapy such as a doxorubicin-containing regimen, in general pall

Absent regulatory and financial barriers, addressed in Chapter 18: Lega

patients with incurable KS should be referred to hospice.

• Non-Hodgkins Lymphoma (NHL)

The incidence of NHL is estimated at up to 2% per year in HIV-infected pa

years in AIDS patients. In the HIV-positive patient, NHL is always high 

always disseminated (Stage III or IV), and presents as either systemic, C

Diagnosis of CNS lymphoma should prompt hospice referral as average sur

Radiation does not prolong survival and provides minimal palliation. Syst

treated with modified regimens with an average survival of eight mont

however, and certainly at relapse, patients should be referred to hospice o

benefit from intensive palliative care.35

Progressive Multifocal Leukoencephalopathy (PML)

Progressive multifocal leukoencephalopathy (PML) is thought to be cause

virus, a human papovavirus. The sudden deterioration of intellectual and 

heralds a median survival of 2 to 4 months. Recent trials have demonstra

novel interventions.36, 37 While clinical investigation should continue, and 

have opted to use empiric cidofovir even though this is of unproven effica

need for intensified palliative care.

Anecdotally, a number of patients described as presenting with PML hav

proved scans and significantly improved longevity following the initiatio

tients with PML who do not experience immune reconstitution with antire

limited life expectancy.

Advanced Liver Disease

Advanced liver disease due to viral hepatitis is becoming a leading cause of 

with HIV. While treatment guidelines for the management of HIV-infected 

hepatitis B and/or C continue to advance, not even the emerging new trea

preventing mortality for patients with advanced cirrhosis and liver failur

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This revised scoring system has been utilized to stratify patients for liver t

recently been recognized in many centers as a feasible option for peop

system may also prove useful in determining which patients deserve a grea

or hospice care. In fact, any individual with a high MELD score and on th

is also a candidate for hospice.39 If the patient receives a liver, then th

revoked. Most patients awaiting transplantation, however, will not receive 

benefit greatly from aggressive palliative care.

Large hepatocellular carcinoma is an additional complication of chronic 

indication for palliative or hospice care.

Intensive Care Unit / Mechanical Ventilation / PCP

Merely being in an intensive care unit is an indication for palliative c

sis.40, 41 AIDS is no exception. Effective palliative care can be provide

training.41 Pneumocystis carinii pneumonia is still the most common A

Acute respiratory failure occurs in 5% to 30% of patients. Intubated AIDS 

rience mortality approaching 50%.44

The attitude of patients with advanced AIDS toward mechanical ventilat

reported.45 Eighty-seven percent of 57 patients responded that withholdin

in the setting of “futility” was acceptable. Therefore, while mechanica

appropriate for the patient with the initial diagnosis of AIDS and PCP, t

AIDS and drug resistant virus may be quite comfortable discussing alternat

ventilation.

Thus palliative care and even an end-of-life style of support for the patient a

stances should be considered routinely and provided aggressively.

QUALITY OF LIFE IN ADVANCED AIDS

■ A study has demonstrated that while asymptomatic patients with HIV 

equivalent to the U.S. general population, patients with symptomatic AIDS 

patients with other chronic illness (gastro-esophageal reflux disease (

depression, diabetes) and those with advanced AIDS scored similar to pat

disease (ESRD).46 One difference worth noting is that all three groups of pe

scored lower on the Emotional Well-Being Scale than all comparison chr

patients with primary depression.

Symptom Management and Quality of Life

Patients with advanced HIV disease often face a vexing array of symptom

loss, pain of various origins and presentations, headaches, neuropathies, d

of breath, confusion, loss of memory, AIDS-related dementia, and others

result of therapy. Many of the drugs used in HAART can cause substantial s

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Emotional and Interpersonal Quality of Life

Some patients will ask their physicians for help in hastening death. Whe

tive for the physician to understand why such a request is being made an

(Table 23-4).47 For some patients the desire to hasten death can be reduced 

management. Others may need treatment for depression, anxiety or oth

Interest in quickening death is often a response to factors that are degrad

life and can be mitigated. The quality of communication between physic

mount importance. (See Chapter 21: Patient-Clinician Communication an

the Transition to Home-Based and Hospice Care.)

Table 23-4: Reasons Given for Patient Requests for Assistan

1. Future loss of control

2. Being a burden

3. Being dependent on others for some or all personal care

4. Loss of dignity

5. Being restricted to bed > 50% of the time

6. Experiencing severe depression or depressed mood

7. Experiencing severe suffering

8. Experiencing severe physical discomfort other than pain

9. Experiencing severe pain

10. Worries about medical costs

Source: Back AL, Wallace JI, Starks HE, Pearlman RA. Physician-assisted suicide and euthan

275:919–25, 1996.

Ongoing communication between clinician and patient yields benefits be

for assistance with dying. Patients who have regular conversations with th

ity of life and preferences for care are more likely to complete advance me

physicians are more likely to know their patients’ relative preferences reg

tom relief, and prolongation of life.3

Table 23-5 offers some examples of questions intended to deepen the dial

and his or her health care providers.48 These questions focus on particul

social and spiritual arenas.

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Meaning of illness How have you made sense of why this is h

What do you think is ahead?

Coping style How have you coped with hard times in th

What have been the major challenges you 

confronted in your life?

Social support network Who are the important people in your life 

depend and in whom do you confide abou

How are the important people in your life 

Stressors What are the biggest stressors you are dea

Do you have concerns about pain or other 

suffering? Do you have concerns about yo

emotional coping?

Spiritual resources What role does faith or spirituality play in 

it taken in facing difficult times in the pas

Psychiatric vulnerability Have you experienced periods of significa

drug, or alcohol use or other difficulties in 

What kinds of treatment have you had and 

helpful?

Economic circumstances How much of a concern are financial issu

Patient-physician How do you want me, as your physician, to 

relationship situation? How can we best work togethe

Source: Block SD. Psychological considerations, growth, and transcendence at the end of life. 

285:2898–905, 2001.

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patient who is seemingly at death’s door to regain function and health wh

in many circumstances because of hospice’s intense, home-based interv

provement, the patient no longer meets hospice criteria, and so begins a 

tion, deterioration, readmission to hospice (often following hospitalizatio

graduation. This paradigm is highly suggestive of a salutary relationship b

focus coupled with individualized care by hospice’s highly-skilled team 

periods of enhanced quality and perhaps quantity of life.

Medicare regulations can make it difficult or impossible to provide concu

services. Because the hospice benefit includes expenditures for medicatio

diem reimbursement, HAART can quickly bankrupt a hospice program. Th

ered along with the risks and benefits of HAART when contemplating re

CONCLUSION

■ Patients with advanced AIDS benefit from competent and conscientiou

tions. Routine discussions with the patient and regular reassessment of 

treatment enhance high quality care and well informed treatment cho

sentinel occurrences as triggers for additional discussion and reassessme

Delivering disease-directed therapies and palliative care simultaneously, 

disease biology unfolds, and attending to patient choice, comfort and qu

stones and the future of excellent care for patients with advanced AIDS.

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1. Brechtl JR, et al. The use of highly active antiretroviral therapy (HAART) in patie

HIV infection: Impact on medical, palliative care, and quality of life outcomes. J P

21:41–51, 2001.

2. Rosenberg T. Patent laws are malleable. Patients are educable. Drug companies ar

crisis is solvable. Look at Brazil. New York Times Magazine, January 28, 2001.

3. Wenger NS, et al. End-of-life discussions and preferences among persons with HIV. 

4. Steinbrook R. Providing antiretroviral therapy for HIV infection. N Engl J Med 34

5. Paterson DL, et al. Adherence to protease inhibitor therapy and outcomes in patie

Ann Intern Med 133:21–30, 2000.

6. Freedberg KA, et al. The cost effectiveness of combination antiretroviral therapy 

344:824–31, 2001.

7. Durant J, et al. Drug-resistance genotyping in HIV-1 therapy: the VIRADAPT rando

Lancet 353:2195–9, 1999.

8. Albrecht MA, et al. Nelfinavir, efavirenz, or both after the failure of nucleoside tre

N Engl J Med 345:398–407, 2001.

9. Montaner JSG, Mellors JW. Antiretroviral therapy for previously treated patients. N 

10. Daugherty CK. Impact of therapeutic research on informed consent and the ethics 

oncology perspective. J Clin Oncol 17:1601–17, 1999.

11. Jenkins V, Fallowfield L. Reasons for accepting or declining to participate in rando

therapy. Br J Cancer 82:1783–8, 2000.

12. Yoder LH, et al. Expectations and experiences of patients with cancer participatin

Oncol Nurs Forum. 24:891–6, 1997.

13. Weeks JC, et al. Relationship between cancer patients’ predictions of prognosis an

JAMA 279:1709–14, 1998.

14. Emanuel EJ, Patterson WB. Ethics of randomized clinical trials [comments]. J Cl

15. Lynn J. Perspectives on care at the close of life. Serving patients who may die soon 

the role of hospice and other services. JAMA 285: 925–32, 2001.

16. Schroeder SA. The legacy of SUPPORT. Study to Understand Prognoses and Prefer

of Treatments [editorial; comment]. Ann Intern Med 131: 780–2, 1999.

17. Gerber KE, Nehemkis AM. Compliance: The Dilemma of the Chronically Ill. New 

18. Cerkoney KA, Hart LK. The relationship between the health belief model and com

diabetes mellitus. Diabetes Care 3:594–8, 1980.

19. Haynes RB, Taylor DW, Sackett DL. Compliance in Health Care. Baltimore: John

1979.

20. Proctor VE, Tesfa A, Tompkins DC. Barriers to adherence to highly active antiretro

people living with HIV/AIDS. AIDS Patient Care STDS 13:535–44, 1999.

21. Wu AW. Adherence and health care utilization in HIV/AIDS: rational or rationalizi

3, 2000.

22. Sorensen JL, et al. Medication adherence strategies for drug abusers with HIV/AID

1998.

Chapter 23 1-17-03.p65 1490
U.S. Department of Health and Human Services • Health Resources and Services Administration 

J Gen Intern Med 15:84858, 2000.

27. Kemppainen JK, et al. HAART adherence in culturally diverse patients with HIV/AI

from a Veterans Administration Hospital in northern California. AIDS Patient Ca

28. Laurence J. Adhering to antiretroviral therapies. AIDS Patient Care STDS 15:10

29. Katzenstein DA, et al. HIV therapeutics: confronting adherence. J Assoc Nurses A

30. Wolfe GS. The case manager’s role in adherence. J Assoc Nurses AIDS Care 8 Sup

31. Baronzio G, et al. Proinflammatory and regulatory cytokine levels in AIDS cachex

32. Flynn NM, et al. Megestrol for AIDS-related anorexia—Response. Ann Intern Med 

33. Vonroenn JH, et al. Megestrol acetate in patients with AIDS-related cachexia. An

34. Gillick MR. Rethinking the role of tube feeding in patients with advanced dement

2000.

35. Little RF, Y.R., Wilson WH, Systemic chemotherapy for HIV-associated lymphoma in 

antiretroviral therapy. Curr Opin Oncol 12:438-44, 2000.

36. Greenlee JE. Progressive multifocal leukoencephalopathy. Progress made and less

338:1378–80, 1998.

37. Hall CD, et al. Failure of cytarabine in progressive multifocal leukoencephalopathy 

immunodeficiency virus. N Engl J Med 338:1345–51, 1998.

38. Kamath PS, et al. A model to predict survival in patients with end-stage liver disea

2001.

39. Meyers FJ. Letter to the editor. N Engl J Med 340:860-1, 2002.

40. Faber-Langendoen K, et al. Dying patients in the intensive care unit: Forgoing tre

Ann Intern Med 133:886–93, 2000.

41. Danis M, et al. Incorporating palliative care into critical care education: Principles

Crit Care Med 27:2005–13, 1999.

42. Benfield TL, et al. Prognostic markers of short-term mortality in AIDS-associated P

pneumonia. Chest 119:844–51, 2001.

43. Forrest DM, et al. The incidence and spectrum of AIDS-defining illnesses in person

drugs. Clin Infect Dis 27:1379–85, 1998.

44. Forrest DM, et al. Validation of the modified multisystem organ failure score as a pr

with AIDS-related Pneumocystis carinii pneumonia and respiratory failure. Ches

45. Curtis JR, Patrick DL, Caldwell ES, Collier AC. The attitudes of patients with advan

medical futility rationale in decisions to forgo mechanical ventilation. Arch Intern 

46. Hays RD, et al. Health-related quality of life in patients with human immunodeficie

United States: results from the HIV Cost and Services Utilization Study. Am J Med 

47. Back AL, Wallace JI, Starks HE, Pearlman RA. Physician-assisted suicide and eutha

JAMA 275:919–25, 1996.

48. Block SD. Psychological considerations, growth, and transcendence at the end of 

JAMA 285:2898–905, 2001.

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U.S. Department of Health and Human Services • Health Resources and Services Administration 

Carla S Alexander, MD, Anthony Back, MD and Margaret Perr

INTRODUCTION

■ This chapter discusses medical care at the end-of-life, and is organi

follows:

• Dying in the Era of HAART

• Preparing Patients and Families for Imminent Death

• Clinical Management of Imminently Dying Patients

• After-Death Care

DYING IN THE ERA OF HAART

Trajectory of Dying

In the early days of the HIV epidemic, hospice referrals tended to follo

tory. A patient’s clinical decline was most often marked by multiple hospita

wasting and weight loss, desire to stop restorative therapies, and/or fatigu

cope with activities of daily living and problem-solving. Now, depen

comorbidities and ability to adhere to combination therapies, there are mu

stage HIV disease. Patients with active illicit substance use who are unab

for example, may have the course of illness complicated by recurrent ski

sodes of endocarditis, and lack of medical follow-up resulting in antibiotic 

sepsis. These patients may also experience infections such as mycobac

(MAC), cryptococcal meningitis and pneumocystis carinii pneumonia (PC

other patients, newer treatments may prolong survival time without much 

cause of death has shifted from opportunistic infections to end-stage orga

complications found with any chronic disease.

Prognostic Indicators

Prognostication based upon a combination of signs and symptoms is c

most appropriate clinical management strategy to alleviate suffering in pe

In the U.S., for hospice programs to accept reimbursement from Medic

prognosis of six months or less if the disease were to run its normal cour

chronic therapies and introduce other treatments that might have been av

of illness, such as steroids, must be based upon a reasonable assessment o

ancy and goals.

Prognostication of time until death in HIV/AIDS is difficult. This is particu

because their basic cardiovascular health can sustain life longer than is p

with the same symptoms. Physicians tend to make overoptimistic progno

larly if they have had a long relationship with the patient.1,2 Prior to the u

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starting therapy with a CD4 cell count lower than 200 cells/mm3 were thr

than those treated earlier in their course. The crude mortality rate for patie

early in their trajectory (after 1997) is 6.7% at 28 months, much different fro

epidemic.7

 Viral load as a prognostic factor does not seem as important w

to treatment. Previous studies may simply reflect that these patients were n

rescue a failing immune system.

Table 24-1: Factors Associated with Shortened Life Expectan

Symptom or Sign Comment

CD4 persistently low Advanced disease: < 

Viral burden remains > 100,000 copies/ml

despite combination therapy

Functional Status < 50 Spending > 50% of d

(Karnofsky Performance Status)

Failure of optimized therapy e.g., multi-drug resis

Desire to forego more therapy May occur after mult

Significant wasting Loss of > 30% lean b

Progressive hepatitis C despite therapy Hepatic failure; drug 

Progressive multifocal Progressive depende

leukoencephalopathy (PML)

Unresponsive Kaposi’s sarcoma involving Progression despite 

an organ

End-stage organ disease Renal, hepatic, or ca

Persistent diarrhea > 1 mo. No response to treatm

Unresponsive lymphoma/ other malignancy Progression despite 

Desire of patient for death Acknowledgment by 

of poor prognosis

Adapted from Moore 8, NHO 9

Despite the development of multiple resistant strains, patients who are 

seem to be living longer. Providers caring for people with long treatmen

frustrated with the lack of drug choices, but good supportive care can allow 

next therapy is released. Liver failure, malignancies, and cardiovascular e

patients with advanced disease; providers now need to be familiar with 

managing these problems.

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with the criteria for initiating HAART in treatment-eligible patients. HA

future-oriented therapy, since the results are not expected in the short te

longer-term survival. This may confuse decisionmaking related to end-of

fore, it is important for clinicians to work closely with patients through the 

that now surrounds HIV treatment in late-stage disease.

These issues have made end-stage HIV/AIDS more similar to other chroni

be pursued regarding what “end-stage” actually looks like to document the 

symptom management that can be useful. Without concrete knowledge, it 

support patients near the end-of-life and providers run the risk of again no

stage. Early recognition is absolutely critical for the kind of planning a

before death.

Setting Reasonable Goals and Maintaining Hope

Patients and providers in the era of HAART may be lulled into thinkin

cured, without noting the larger picture that HIV/AIDS remains a fatal ill

lost there is danger of reacting to every decline as something that can an

person becomes acutely ill, curative interventions such as ventilatory sup

are appropriate. But for those who are in poor nutritional condition or wh

renal disease, what initially presents as a curable illness may turn into s

The provider must recognize how fear of death impacts management dec

by provider). For some cultures it is imperative to continue what may even 

(See Chapter 14: Culture and Care). Although it is difficult and time-cons

conversations with loved ones about a realistic interpretation of the clini

part of medical management as writing orders for intravenous fluids.

A patient’s family may be friends, other residents of a shelter, or even hea

talked with patients and their support persons at a less emotional time ce

cess for health care providers, but confronting a possible death is not easy 

attend it have been anticipated. Another complication, particularly in hom

populations, is underlying mental illness which requires additional com

effort. (See Chapter 21: Patient-Clinician Communication and Chapter 1

In the face of even the bleakest situation it is important to not insinuate t

to be done. The patient and family should, at these times, be helped to red

is an intangible quality that allows us to overlook current discomforts to ac

As people near the end-of-life they turn from ‘doing’ to ‘being’ and may e

positive feeling for family, self, or others.10

When people are known to be dying, goals can be adjusted to fit the time they 

new goal may be to live until an anniversary such as a birthday (within weeks

could mean celebrating that event sooner to include the dying person (for e

party this week rather than trying to make it to the next month). Nature, poe

new meaning and can sustain one near the end-of-life as long as symptom

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family member understanding of the clinical situation. (See Chapter 21: P

nication and Chapter 22: Facilitating the Transition to Home-Based an

patients and family members for their assessment of the clinical situatio

a discussion about care for imminent death. Straightforward, open-ended q

as “What are your biggest concerns now?” In addition, it is often useful 

following important domains:11

• Optimizing physical comfort

• Maintaining a sense of continuity with one’s self

• Maintaining and enhancing relationships

• Making meaning of one’s life and death

• Achieving a sense of control

• Confronting and preparing for death

Table 24-2 offers useful questions to help health care providers discuss th

and their family members.

Table 24-2: Useful Questions for Exploring Patient and/or Fam

Domain Question

Physical comfort Tell me about your pain. Can you rate 

How much do you suffer from physical 

shortness of breath, fatigue, or bowel p

Continuity with one’s self What makes life most worth living for 

If you were to die sooner rather than l

undone?

Maintaining and enhancing How are your family (or loved ones) h

relationships Have you had a chance to tell your fam

they are important to you?

Making meaning What kind of legacy do you want to lea

of life and death What would allow you to feel that goin

a purpose?

Do you have spiritual beliefs that are i

with this illness?

Achieving a sense of control How would you like your death to go?

Confronting and preparing How much are you thinking about dyi

for death What are you thinking about it?

Neglect of problems in these domains can lead to depression and difficulty 

for both the patient and family members. The empirical demonstration of 

attention to these domains is just beginning.12

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• Physical symptoms, such as pain or dyspnea

• Psychological issues, such as depression or anxiety

• Social issues, such as family coping

• Practical logistics, including expected place of death

• Spiritual or existential issues, such as chaplain support or sense 

• Special goals for life closure, such as family quarrels to resolve

It is important to understand how patients and family members balance q

life. Patients and family members should be informed that a peaceful de

with medical care that is not intrusive. Family members should further und

ment in care is critical and that there are specific roles that they may pl

medication administration; helping a patient with leaving a legacy; orches

helping with goodbye telephone calls; or, simply being present).

Table 24-3 presents information to help health care providers address som

for family members of imminently dying patients.

Table 24-3: Common Family Concerns for Family Members of

 Imminently Dying Patients

Concern Fact

Dying will be painful. Most pain can be controlled to a de

finds acceptable with noninvasive 

Everything possible must Some invasive treatments aimed at 

be done. as CPR, are painful and ineffective 

patients.

Do Not Resuscitate orders will DNR orders can actually allow med

mean that medical care will be focus on issues that are more impor

limited in important ways. including legacy-building and time 

important people.

More medical care will be Spending one’s last hours at home 

available in the hospital than importance for many patients, and 

at home. for dying patients can be handled a

tions arise, hospitalization or place

facility may be possible.

End-of-life care with home Contact with important clinicians 

hospice will mean losing phone calls. Home hospice is direct

contact with primary HIV physician; it does not mean that the

clinicians.

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Encouraging Life Closure

Making sense of a life is not something that a clinician can do for a p

facilitate or encourage life review activities for patients and their fam

include the following:

• Telling and sharing stories—events that were important, fun

storytelling can be audiotaped or videotaped for a more perma

• Deciding what to do with one’s things—giving a favorite sweater 

stamp collection to a nephew.

• Planning the patient’s memorial service—music, readings, peo

one to preside over the service, whether to have a religious servi

service.

Some clinicians use a mnemonic of five important conversations to comp

These five items themselves lack the context and richness of a life, but they a

ers of the kinds of issues that patients may want to talk about with importan

• “Thank you”

• “I forgive you”

• “Please forgive me”

• “I love you”

• “Goodbye”

Finally, most patients recognize some transcendent dimension to life, an

sues can be critical near death. It is helpful to remember that spirituality 

tuality refers to an individual’s relationship with the transcendent, wher

liefs, practices, and language that characterize a community searching f

in a particular way. Even though many patients will feel alienated from par

yet have a spirituality that can help them make sense of their life and t

clinicians and chaplains with experience in end-of-life care can be parti

available.

CLINICAL MANAGEMENT OF IMMINENTLY DYING PAT

Clinical Recognition of Imminent Death

It is important that the family and patient understand normal landmark

overcome common misperceptions regarding imminent death. One such m

that lack of appetite and diminished oral intake are causing profound di

nutrition are required. The normal dying process includes the following 

• Loss of appetite

• Decreased oral fluid intake, and decreased thirst

• Increasing weakness and/or fatigue

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• Noisy breathing as pharyngeal muscles relax

In particular, neurologic dysfunction can sometimes result in terminal de

a mounting syndrome of confusion, hallucinations, delirium, myoclonic j

death. Recognized early, this can be treated with neuroleptics such as h

azine. For more information see Chapter 10: Psychiatric Problems.

When death occurs, the clinical signs include the following:

• Absence of heartbeat and respirations

• Fixed pupils

• Skin color turns to a waxen pallor and extremities may darken

• Body temperature drops

• Muscles and sphincters relax, sometimes resulting in release 

Preparation, which can involve the family, should include the following:

• Creating a peaceful environment to the patient’s liking

• Preparing instructions about whom to call (usually not 911) w

• Taking time to witness what is happening

• Creating or using rituals that can help mark the occasion in a 

When death occurs, families should be encouraged to take whatever time 

happened, and say their goodbyes. There is no need to rush the body to a 

families want to stay with the body for a period of time after death.

Symptom Management in the Last Hours of Life

Certain symptoms, some of which are covered elsewhere in this book, 

the very end-of-life. Table 24-4 presents common symptoms and ways to m

tients more comfortable in their last hours of life.

Considering Withdrawal of Nutrition and Hydration

In every culture, giving nourishment is seen as an act of caring as well 

health. As a person approaches death, eating and drinking become more 

adequate strength to chew and to maintain an upright position. The palli

other ways for the family to offer support and care without forcing a dyi

substance than they can handle. As the energy requirements diminish, f

may cause more difficulty than withholding liquids might.

Excess fluid tends to localize in the pharynx causing a gurgling sound or 

be distressing to families. Fluids also accumulate in the lungs, the abdom

extremities. As the activity level of the patient decreases, this excess fluid 

patient, making oral intake of fluids less crucial.

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The American Academy of Hospice and Palliative Medicine (AAHPM), t

tion for physicians and other direct care providers in the field of palliativ

ment on the Use of Nutrition and Hydration which recognizes dying as a 

nizes that clinical judgement and skill are necessary to determine when 

hydration and nutrition might be appropriate. The statement reads, in pa

Hydration and nutrition are traditionally considered useful a

components of good medical care. They are provided with the 

of benefiting the patient. However, when a person is approach

provision of artificial hydration and nutrition is potentially 

provide little or no benefit to the patient and at times may ma

dying more uncomfortable for both patient and family. For th

AAHPM believes that the withholding of artificial hydration a

the end-of-life may be appropriate and beneficial medical car

Ventilator Withdrawal for Intubated Patients

In instances like fatal pneumocystis carinii pneumonia, mechan

withdrawn in order to discontinue futile and invasive medical treatment. (

Symptoms.) These decisions are complex and involve ethical principles of w

treatments that are well established.14,15 (See Chapter 17: Ethical Issues.) I

that clinicians establish with the family and, if possible, the patient, tha

Loss of thirst Explain normal dying process; intraven

increase secretions, edema, and discomf

Dry mouth Moisten oral mucosa with baking soda m

salt, 1 teaspoon baking soda, 1 quart tep

saliva. Coat lips with petroleum jelly.

Pain Watch for delirium or muscular fascicula

metabolite accumulation as renal func

interval may need to be decreased just be

Myoclonic jerks Benzodiazepines, such as lorazepam 1-2 

1 ml water and administered to oral mu

dosing.

Delirium Haloperidol 0.5-2.0 mg IV, SQ, or rec

10-25 mg q6 is more sedating; both may n

Loss of ability Stop oral intake to prevent aspiration; sc

to swallow 1-3 transdermal patches as frequently as 

glycopyrrolate 0.2 mg sq, will reduce saliv

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ventilation is withdrawn.

A protocol developed by experienced critical care physicians appears in 

Table 24-5: Protocol for Ventilator Withdrawal at End of Life

Step Specific Actions

Prepare the family and Hear concerns, address fears, establ

patient (if conscious) explain procedure so they are prepare

the patient’s bedside if they wish.

Appropriate setting and Provide privacy to the greatest degr

monitoring setting. Turn off all monitors. Remo

associated machinery if possible w

comfort. Liberalize visitation as much 

Ensure adequate sedation Establish continuous infusions of ana

medications; provide wide latitude in 

who have experience in evaluating su

cannot talk.

Reduce inspired oxygen to This should be done in steps, with ad

21% (air) that any dyspnea or air hunger is 

morphine infusion; if the infusion is 

should be given to rapidly establish th

Remove positive end Air hunger must be relieved before pro

expiratory pressure (PEEP)

Set ventilator to IMV or This provides another period to estab

PS level to fully meet before proceeding.

patient’s ventilatory needs

Observe and modify This process may take 15 to 30 minut

sedatives while gradually be present, but should be warned of the 

reducing IMV rate or PS increases in agitation or respiratory r

level to 5 titrated. Ventilator alarms must be d

triggered by terminal hypoventilation

Extubate or leave on Offer the family the possibility of priva

humidified air by T-piece if feasible, or support from any staff 

have present. Rituals devised by the f

clergy may have an important role.

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institutions in the U.S., most surveys show that most people prefer death 

Every attempt should be made to allow the person to die where they feel m

a clinical setting, being able to be with the person who is dying is very c

members. Every attempt should be made to remove unnecessary monito

readers, intravenous lines, cardiac monitors, and even ventilators when 

above for removing ventilatory support.

Those in attendance may appreciate a pastoral care provider who can le

may want to sing and to wait for the ‘spirit’ to leave the room. Ritual clean

other cultural practices should be encouraged. Even after the family has g

removed, it is advisable to leave a silk or plastic flower on the bed to al

opportunity to say goodbye and to grieve this death before they must go 

patient. Creating a memorial section in the intensive care unit or a bu

workers permission to gain closure, especially when they are in an area 

deaths. (See Chapter 20: Care for the Caregiver.)

Memorial Rituals

The AIDS Quilt is a visible remembrance of the lives of individuals who 

serves as a permanent record of lives lost to HIV/AIDS. The making of 

concrete way for loved ones and family to resolve their own grief. Scrapboo

other creative efforts can also help those who mourn to express these fee

or other family members who want a tangible means of remembering the d

of remembrance include planting a tree, building a shrine, or placing a t

Syndrome of Multiple Losses

Mourning one death is complex and can extend for months or years. (

Bereavement.) During the AIDS epidemic, many gay men have suffered 

friends, minority mothers may have lost several children, and inner-cit

loved ones to violence and disease.16 When there are multiple losses to grie

the individual does not have adequate time to complete the usual berea

develop a protective response that may cause them to shut down emotio

experience significant feelings of either a positive or negative nature.17,18,

like a post-traumatic stress disorder and usually requires professional help 

ter 10: Psychiatric Problems.)

Chapter 24 1-17-03.p65 1502
U.S. Department of Health and Human Services • Health Resources and Services Administration 

1. Christakis NA, Lamont EB. Extent and determinants of error in doctors’ prognoses 

prospective cohort study. BMJ 320:469-72, 2000.

2. Glare P and Virik K. Independent prospective validation of the PaP score in termin

hospital-based palliative medicine consultation service. J Pain Symptom Manage 

3. National Hospice Organization. Standards and Accreditation Committee: Medical G

Medical Guidelines for Determining Prognosis in Selected Non-Cancer Diseas

National Hospice Organization, 1997.

4. Chen R, Westfall A, Cloud G, et al. Long-term survival after initiation of antiretrov

Retroviruses and Opportunistic Infections. Chicago, IL (Abstract 341) February 4-

5. Sterling TR, Chaisson RE, Bartlett JG, Moore RD. CD4 lymphocyte level is better th

determining when to initiate HAART. 8th Conference on Retroviruses and Opportu

(Abstract 519) February 4-8, 2001.

6. Kaplan J, Hanson D, Karon J, et al. Late initiation of antiretroviral therapy (at CD

cells/ml) is associated with increased risk of death. 8th Conference on Retroviruses 

Chicago, IL (Abstract 520) February 4-8, 2001.

7. Hogg RS, Yip B, Chan KJ, et al. Rates of disease progression by baseline CD4 cell co

initiating triple-drug therapy. JAMA 286:2568-77, 2001.

8. Moore J, et al. Severe adverse life events and depressive symptoms among women w

in four cities in the United States of America. AIDS 13:2459-68, 1999.

9. National Hospice Organization. Standards and Accreditation Committee: Medical G

Medical Guidelines for Determining Prognosis in Selected Non-Cancer Disease

Hospice Organization, 1996.

10. Herth K. Fostering hope in terminally ill people. J Adv Nurs 15:1250-9, 1990.

11. Singer PA, Martin DK, Kelner M. Quality End-of-Life Care: Patients’ Perspectives. J

12. Teno JM, Clarridge B, Casey V, Edgman-Levitan S, Fowler J. Validation of Toolkit Af

Member Interview. J Pain Symptom Manage 22:752-8, 2001.

13. Statement on the Use of Nutrition and Hydration. American Academy of Hospice an

November 16, 2001. Available at http://www.aahpm.org.

14. Rubenfeld GD, Crawford SW. Principles and Practice of Withdrawing Life-Sustaini

Managing Death in the Intensive Care Unit: the Transition from Cure to Comfo

eds. New York: Oxford University Press, 2001.

15. Brody H, Campbell ML, Faber-Langendoen K, Ogle KS. Withdrawing Intensive Life-

Recommendations for Compassionate Clinical Management. N Engl J Med 336:652

16. Cody WK. Lived experience of grieving persons living with HIV who have used injec

J Assoc Nurs AIDS Care 11:82-92, 2000.

17. Cherney PM, Verhey MP. Grief among gay men associated with multiple losses from 

Death Studies 20:115-32, 1996.

18. Mallinson RK. Grief work of HIV-positive persons and their survivors. In Nurs Clin 

19. Sikkema KJ, Kalichman SC, Hoffmann R et al. Coping strategies and emotional we

men and women experiencing AIDS-related bereavement. AIDS Care 12:613-24, 20

Chapter 24 1-17-03.p65 1503
Chapter 24 1-17-03.p65 1

504
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

■ Maintenance of skin integrity in people with HIV poses a number of 

practitioners and caregivers. Because of the nature of HIV, it can be d

to heal open wounds or ulcers once they appear. It is for this reason t

closely with patients and their caregivers in instructing them in prin

clinician should teach symptomatic relief of some of the more commo

address basic assessment of skin so that the caregiver can report p

occur. Vigilant caregivers in the home are the patient’s best defense ag

plications of pressure or decubitus ulcer formation. (See Tables 25-1 

While assessing and treating skin disorders is clinically important thro

infection, the challenges of maintaining skin integrity are greatest fo

disease. Prevention and treatment of late-stage dermatologic complic

of comprehensive palliative care for patients with HIV disease, and c

means of involvement and empowerment for family caregivers in the 

with AIDS.

Because there are many dermatologic conditions associated with H

patient have a thorough medical evaluation for diagnosis and treatmen

once they occur (see Chapter 9: Dermatologic Problems). Equally imp

sessment of the individual to determine not only the presence of any 

mine the patient’s risk for skin breakdown at any time during the con

Jean Tuthill RN, MSN, CWOCN and Suzanne R Garnier RN, B

Table 25-1: Guidelines for Caregiver Teaching Related to Sk

• Inspect skin every day for any pink or reddened areas and report imm

to physician or nurse.

• Avoid massage over bony prominences.

• Minimize skin exposure to urine or feces from incontinence, or persp

• Avoid rubbing skin with washcloth or towel when bathing and drying

• Cleanse skin at time of soiling and at regular intervals.

• Use gentle cleansers such as Dove or Neutrogena.

• Avoid deodorant soap.

• Avoid hot water.

• Turn patient frequently. (Every 1-2 hours in bed. Reposition when in 

• Use pull sheets to move or reposition patient in bed. Do not drag pat

across bed to reposition.

• Maintain adequate dietary intake of protein, calories, and fluids,

avoiding caffeine and alcohol.

Chpt 25 1-17-03.p65 1505
506 U.S. Department of Health and Human Services • Health Resources and Services Administ

• Avoid hot water

• Use gentle cleansers (Dove, Cetaphil,

Eucerin, Neutrogena); avoid deodorant soap

• Minimize friction during cleansing and

drying (avoid washcloth, pat skin dry)

• Apply water-soluble lotion and emollient

after bath while the skin is still damp; apply

again at bedtime (Aquaphor ointment,

Aveeno lotion, Eucerin cream or lotion,

Moisturel cream or lotion)

• If above lotions are ineffective, use lactic

acid, urea, or sodium lactate moisturizers

(Amlactin 12%, Lac-Hydrin 10%)

• Refrigerate topical creams and ointments

• Encourage fluid intake, avoid or discourage

alcohol and caffeine

• Avoid restrictive or nonabsorbent clothing

• Keep fingernails short and smooth or wear

cotton gloves

• Wash hands frequently

• Use fragrance-free products vs.

unscented agents

• Avoid lanolin-based creams or ointments

• Prevents vasodilatio

itching

• Prevents removal of 

deodorant soap deh

• Prevents mechanic

• Adds or helps to ret

• Adds or helps to ret

• Refrigeration produ

which has an antipr

• Maintains hydration 

• Guards against mec

• Guards against brea

scratching

• Prevents contamina

• Unscented products 

masking which elic

50% of patients 1

• Produces a high rat

Once assessment is completed and risk is determined, implementing 

teaching caregivers is an essential component of the overall nursing c

DETERMINING RISK OF BREAKDOWN

■ To determine risk of skin breakdown, a thorough nursing history 

includes a history of any dermatologic conditions. A validated, relia

should be used to determine risk of breakdown based on mobility, nutri

degree to which skin is exposed to moisture (incontinence, diaphore

such as shear and friction in the bedbound individual. Visual inspectio

determine presence of lesions, ulcers, or rashes. Dry, flaky, and/or i

noted.

Full-body skin checks should be an integral part of the initial exam an

a regular basis for all individuals who are deemed to be at risk, howev

Chpt 25 1-17-03.p65 1506
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

Table 25-3: Stages of Pressure Ulcers Defined

Stage I A nonblanchable area of erythema, which does not resolve a

pressure relief. In dark-skinned individuals this may presen

skin, warmth, edema, induration or hardness. The skin is al

stage I pressure ulcer.

Stage II Partial-thickness skin loss involving epidermis, dermis, or b

superficial with a pale pink wound bed and serous (never se

drainage. May present as an abrasion or blister.

Stage III Full-thickness skin loss involving damage to or necrosis of s

Wound bed is beefy pink but may have some necrotic tissue

undermining of peri-wound skin or tunneling. Drainage may 

Underlying support structures are not visible.

Stage IV Full-thickness tissue loss with extensive destruction, tissue 

muscle, bone or supporting structures. Support structures a

capsule, bone, fascia, muscle).

Pressure ulcers must be staged accurately for documentation, reimbursem

issues. Pressure ulcers are never downstaged: a stage IV ulcer does not b

does not become a stage I, etc. as it heals. It would be classified as a 

epithelializing stage IV or finally a healed stage IV.

Pressure ulcers cannot be accurately staged until the deepest viable tiss

covered with eschar or necrotic tissue cannot be staged until they are debrided

as “full-thickness pressure ulcer unable to stage secondary to the presence 

■ Perhaps the most common manifestation of HIV-related skin disorde

skin. A host of dermatologic as well as systemic illnesses contribute t

essential that these skin disorders be evaluated and diagnosed by app

nel. Table 25-2 provides a list of nursing measures that can provide sym

appropriate medical regimen has been instituted.

PRESSURE ULCERS

■ One of the most common, yet often overlooked threats to skin integ

or immunocompromised patient is that of pressure ulcer or decubitus 

sure ulcers are commonly seen as long-term complications of compl

however, these ulcers can occur in relatively short periods of time in in

ill. See Color Plates 25-1 through 25-5 for the four stages of pressure u

pressure ulcer staging can be found in Table 25-3.

Several tools are available to health care practitioners that are relia

tools, referred to as the Braden scale or the Norton scale, measure 

status and assign a score that correlates with risk for breakdown.2

 A sa

can be seen in Table 25-4 with a sample decision tree in Figure 25-1. 

teaching on skin care can be found in Table 25-1.

Chpt 25 1-17-03.p65 1507
508 U.S. Department of Health and Human Services • Health Resources and Services Administ

2. Very limited: Responds only to painful stimuli. Cannot communicate discomfort except by moaning or restlessness OR has a sensory impairment which limits the ability to feel pain or discomfort over 1⁄2 of body 2. Very moist: Skin is often, but not always, moist. Linen must be changed at least once a shift. 2. Chairfast: Ability to walk severely limited or non-existent. Cannot bear own weight and/or must be assisted into chair or wheelchair. 2. Very limited: Makes occasional slight 

h

i

b

d

t

it

4. No impairment: Responds to verbal commands, has no sensory deficit which would limit ability to feel or voice pain or discomfort. 4. Rarely moist: Skin is usually dry, linen only requires changing at routine intervals. 4. Walks frequently: Walks outside the room at least twice a day and inside room at least once every 2 hours during waking hours. 4. No limitations: Makes major and frequent 

h

i

iti

ith

t 

Table 25-4: Braden Risk Assessment Tool 3. Slightly limited: Responds to verbal commands, but cannot always communi- cate discomfort or need to be turned OR has some sensory impairment, which limits ability to feel pain or discomfort in 1 or 2 extremities. 3. Occasionally moist: Skin is occasionally moist, requiring an extra linen change approximately once a day. 3. Walks occasionally: Walks occasionally during day, but for very short distances, with or without assistance. Spends majority of each shift in bed or chair. 3. Slightly limited: Makes frequent, though slight 

h

g

i

b

d

t

it

1. Completely limited: Unresponsive (does not moan, flinch, or grasp) to painful stimuli, due to diminished level of consciousness or sedation OR limited ability to feel pain over most body surface 1. Constantly moist: Skin is kept moist almost constantly by perspiration, urine, etc. Dampness is detected every time patient is moved or turned. 1. Bedfast: Confined to bed. 1. Completely immobile: Does not make even slight 

h

g

i

b

d

t

it

Sensory Perception Ability to respond meaningfully to pressure-related discomfort Moisture Degree to which skin is exposed to moisture Activity Degree of physical activity Mobility Ability to change and control bod

Chpt 25 1-17-03.p65 1508
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

4. Excellent: Eats most of every meal. Never refuses a meal. Usually eats a total of 4 or more servings of meat and dairy products. Occasionally eats between meals. Does not require supplementation. 2. Probably inadequate: Rarely eats a complete meal and generally eats only about 1⁄2 of any food offered. Protein intake includes only 3 servings of meat or dairy products per day. Occa- sionally will take a dietary supplement OR receives less than optimum amount of liquid diet or tube feeding. 2. Potential problem: Moves feebly or requires minimum assistance. During a move skin probably slides to some extent against sheets, chair, restraints, or other devices. Maintains relatively good position in chair or bed most of the time, but occasionally slides down. 3. Adequate: Eats over half of most meals. Eats a total of 4 servings of protein (meat, dairy products) each day. Occasionally will refuse a meal, but will usually take a supplement if offered OR is on a tube feeding or TPN regimen which probably meets most of nutritional needs. 3. No apparent problem: Moves in bed and in chair independently and has sufficient muscle strength to lift up completely during move. Maintains good position in bed or chair at all times. 1. Very poor: Never eats a complete meal. Rarely eats more than 1/3 of any food offered. Eats 2 servings or less of protein (meat or dairy products) per day. Takes fluids poorly. Does not take a liquid dietary supplement OR is NPO and/or maintained on clear liquids or IV’s for more than 5 days. 1. Problem: Requires moderate to maximum assistance in moving. Complete lifting without sliding against sheets is impossible. Frequently slides down in bed or chair, requiring frequent repositioning with maximum assistance. Spasticity, contractures or agitation lead to almost constant friction. Nutrition Usual food intake pattern Friction and Shear 

TOTAL SCORE Table 25-4: Braden Risk Assessment Tool (continued)

Chpt 25 1-17-03.p65 1509
510 U.S. Department of Health and Human Services • Health Resources and Services Administ

Figure 25-1: Decision Tree for Skin Care Interventions

Chpt 25 1-17-03.p65 1510
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

One commonly misdiagnosed condition is herpes simplex ulcer infect

herpes. Because of their location these ulcers can be mistaken for stage 

Although continued unrelieved pressure to the lesions will certainly 

tion regardless of etiology, treatment of herpes must include pharmac

cause medication is critical to healing it is of paramount importance 

treat herpes. (See Chapter 9: Dermatologic Problems.) To distingui

pressure ulcers, clinicians should remember that with herpes, there is 

lesion and these lesions are usually distributed bilaterally. Also, herpe

than pressure ulcers of similar depth, and aggressive pain managemen

Chapter 4: Pain.) Finally, herpes ulcers will not respond to convention

ulcers.

CONCLUSION

■ Skin care for people with HIV is a critical component of palliative c

factors contributing to these sometimes debilitating skin disorders it 

skin care as a team. Physicians, nurses, patients, and caregivers must 

vide medical management as well as symptomatic relief.

Chpt 25 1-17-03.p65 1511
512 U.S. Department of Health and Human Services • Health Resources and Services Administ

1. Krasner D, Rodheaver G, Sibbald G. Chronic Wound Care: A Clinical Source Bo

Professionals, 3rd ed. Wayne, Penn: HMP Publications, 2001.

2. Clinical Practice Guideline No. 3: Pressure Ulcer in Adults: Prediction and P

Agency for Health Care Policy and Research, U.S. Dept. of Health and Human Se

Chpt 25 1-17-03.p65 1512
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

COLOR PLATE 25-1. Stage I decubitus ulcer on greater trac

Credit: Hollister Incorporated. Permission to use and/or reproduce this copyrighted material has bee

Hollister Incorporated.

COLOR PLATE 25-2. Stage II decubitus ulcer on ischeal

tuberosity (buttock)

Credit: Hollister Incorporated. Permission to use and/or reproduce this copyrighted material has bee

Hollister Incorporated.

COLOR PLATE 25-3. Stage III decubitus ulcer

Credit: Hollister Incorporated. Permission to use and/or reproduce this copyrighted material has bee

Hollister Incorporated.
514 U.S. Department of Health and Human Services • Health Resources and Services Administ

COLOR PLATE 25-4. Stage III decubitus ulcer with necrosis o

Credit: Hollister Incorporated. Permission to use and/or reproduce this copyrighted material has be

Hollister Incorporated.

COLOR PLATE 25-5. Stage IV decubitus ulcers on ischeal tub

and sacrum

Credit: Hollister Incorporated. Permission to use and/or reproduce this copyrighted material has be

Hollister Incorporated.
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

INTRODUCTION

■ This chapter is designed to give providers the information they nee

may need during the course of treatment and care. The resources are 

sive but not exhaustive. These resources will provide links and inform

resources. For example, State- or region-specific resources are not 

through the national web organizations and web sites.

The first section of the chapter is an outline of resources organized alp

Once a resource is listed, it is not listed under subsequent topics. T

sites, publications, and organizations.

The outline is followed by a table that lists web sites alphabetically. I

the subheadings, which reflect the target audience and primary conte

Outline Topics 

I. General Palliative Care 

II. Hospice 

III. Care for the Caregiver 

IV. Cancer/Cancer Pain 

V. Pediatric 

VI. Clinician Education 

VII. Professional Associations 

VIII. Psychosocial Care 

IX. HIV/AIDS Clinical Care 

X. General HIV/AIDS Consumer Resources 

XI. Cultural Competency 

XII. Policy/Advocacy 

XIII. International Focus 

XIV. Complementary and Alternative Therapies 

Magda BariniGarcía, MD, MPH, and Demia L Sundra

Chpt 26 1-17-03.p65 1515
516 U.S. Department of Health and Human Services • Health Resources and Services Administ

with recommendations for future directions.

• Published by National Academy Press: 1997, ISBN: 0-309-06372

• Report can be reached at: www.nap.edu/catalog/5801.html and 

ordered through National Academy Press at www.nap.edu; or 

1-888-624-8373 or 202-334-3313

Building an Institutional Commitment to Pain Management: 

Manual for Improvement. An excellent compilation of resource ma

tional support of pain management; all of the sample resource tools ar

• Available from Wisconsin Cancer Pain Initiative, 3675 Medical 

of Wisconsin Medical School, 1300 University Avenue, Madison

• Phone: 608-262-0278; Fax: 608-265-4014; Email: aacpi@aacpi.or

The Center to Advance Palliative Care: Provides information for ad

policymakers, and other professionals on developing palliative care p

other health organizations. The site also has resources for provider ed

• www.capcmssm.org/index.cgi

A Comprehensive Guide for the Care of Persons with HIV Diseas

Care, FD Ferris, JS Flannery, HB McNeal, MR Morissette, R Cameron

• Mount Sinai Hospital and Casey House Hospice, Toronto, Canad

ISBN 0-662-22924-X

The End-of-Life: Exploring Death in America, National Public Radi

is offered on topics such as grief and bereavement, funeral arrangemen

medicine, and doctors dealing with death. Internet sites, a bibliogra

other “readings” are available as resources.

• www.npr.org/programs/death/index.html

• Audio cassettes are available by calling 1-877-NPR-TEXT (677-8

Five Wishes: Five Wishes is a comprehensive living will that addres

emotional and spiritual as well as medical wishes. It is unique among 

health agent forms in posing a range of important questions. The c

Steps, helps the caregivers/family talk with the patient and the doctor

• Can be ordered for $5.00 from Aging with Dignity,

P.O. Box 1661, Tallahassee FL 32302-1661

• www.agingwithdignity.org

• Phone: 1-888-594-7437

Chpt 26 1-17-03.p65 1516
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

• Phone: 703-341-5000

• www.graceprojects.org

Guidelines for Determining Prognosis for Selected Non-Cancer D

pice Organization.

• Alexandria, FA: National Hospice Organization, 1996.

The Growth House, Inc.: Extensive resources available on living with l

and on care in death and dying. Topics on the site include HIV/AID

hospice and home care, pain management, and children dealing with 

• www.growthhouse.org/

• HIV/AIDS general resources: www.growthhouse.org/hivlinks.ht

• Phone: 415-255-9045; e-mail: info@growthhouse.org

Handbook for Mortals: Guidance for People Facing Serious Illnes

Joan Harrold, MD, and the Center to Improve Care of the Dying, Georg

• Published by Oxford University Press: 1999, ISBN 0195116623

Improving Care for the End-of-Life: A Sourcebook for Health Car

cians, Joanne Lynn, MD, Janice Lynch Schuster, Andrea Kabcenell, R

• Published by Oxford University Press: 2000, ISBN 0195116615

International Association for Hospice and Palliative Care: IAHPC a

opment, quality, and access to hospice and palliative care around t

available through an on-line newsletter, Internet links, bookshop, even

fact sheets, and an ethical issues page.

• www.hospicecare.com/

• Fax: 713-339-9041; E-mail: sitemngr@hospicecare.com

Joint Commission on Accreditation of Healthcare Organizations: 

dards for accreditation of healthcare organizations.

• www.jcaho.org/standard/pm_hap.html

Last Acts: A Robert Wood Johnson Foundation funded campaign. T

increase the quality of end-of-life care, stating that their goals are to b

out in the open and help individuals and organizations pursue better w

Through the site, one can access an electronic newsletter, a booksho

sources.

• www.lastacts.org/

Chpt 26 1-17-03.p65 1517
518 U.S. Department of Health and Human Services • Health Resources and Services Administ

The National Hospice and Palliative Care Organization: The orga

round improving care at the end-of-life and increasing access to pal

Their stated goal is to profoundly enhance the quality of life for peop

their loved ones. Consumer brochures on hospice care, professional e

hospice locator, hospice and palliative care statistics, and other reso

web site.

• www.nhpco.org/

• Find a Hospice Program (hospice locator by State or hospice n

www.nhpco.org/directory/

• Consumer Brochures (click on National Hospice Foundation fr

- Hospice Care: A Consumer’s Guide to Selecting a Hospice P

www.hospiceinfo.org/public/articles/index.cfm?cat=3

- Communicating Your End-of-Life Wishes: www.hospiceinfo

public/articles/index.cfm?cat=6

- Hospice Care and Medicare Hospice Benefit: www.hospicei

public/articles/index.cfm?cat=7

• Phone: 703-516-4928; Fax: 703-525-5762; E-mail: info@nhpco.or

On Our Own Terms: Moyers on Dying: Bill Moyers hosted this four-p

Broadcasting System. The series covered major issues on death and 

such as choices at the end-of-life, the role of palliative care, and issue

end-of-life care. The web site offers resources on end-of-life tools, finan

clinical care, and psychosocial issues.

• www.pbs.org/wnet/onourownterms/

• Video tapes of the series may be ordered by calling

Films of the Humanities at 1-800-257-5126

The Oxford Textbook of Palliative Medicine, Derek Doyle, Geoffrey 

Editors.

• Published by Oxford University Press, 2nd Edition: 1999, ISBN: 0

Palliative Care for People with AIDS, Ruth Sims and Veronica Moss

• Singular Publishing, 2nd edition: 1995, ISBN 1565933591

Partnership for Caring, Inc.: This non-profit organization partners in

tions to increase the quality of death and dying in the U.S. The organi

legal information, resource guides, advance directives information, and 

• www.partnershipforcaring.org/HomePage/

• Phone: 202-296-8071; Fax:202-296-8352; E-mail pfc@partnershi

• Information Hotline for end-of-life issues: 800-989-9455 (option 

Chpt 26 1-17-03.p65 1518
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

• Phone: 406-243-6601; Fax: 406-243-6633; E-mail: excell@selway

Symptom Management Algorithms: A Handbook for Palliative Ca

Linda Wrede-Seaman, MD.

• Published by Intellicard, 2nd edition: 1999, ISBN: 188841107

• Decision algorithms for assessment and management of pai

and common symptoms in terminal illness

Symptom Relief in Terminal Care, Gary A. Johnson, MD.

• Includes a chapter on symptom management in HIV.

• The last edition (4th) of this book is out of print. A new editio

Contact Sonoma County Academic Foundation for Excellence I

be notified of when the new book will be in print, members.ao

707-527-6223; E-mail: scafem@aol.com, mailing address: 3324 

Rosa, CA 95404

Toolkit of Instruments to Measure Care at the End-of-Life: This sit

bibliography of instruments to measure the quality of care and quality 

and their families.” The toolkit works on measuring the needs of pa

patient-focused, family-centered survey instruments.

• www.chcr.brown.edu/pcoc/toolkit.htm

UNAIDS Technical Update: AIDS Palliative Care, Oct. 2000: Part of 

rials, this 16-page report covers of all aspects of palliative care in HIV. 

tive care, discusses issues specific to HIV in palliative care, reviews wha

are necessary for people living with HIV/AIDS, and makes recommen

palliative care. Includes some successful models from around the wor

• Report can be downloaded in PDF format at: www.unaids.org/

publications/documents/care/general/JC-PalliCare-TU-E.pdf

• Or order by Phone: +41 22 791 4651; e-mail: unaids@unaids.or

to UNAIDS Information Centre, 20 Avenue Appia, 1211 Geneva 

II. HOSPICE

Hospice Foundation of America: HFA is a “nonprofit organization th

and works to educate professionals and the families they serve in issu

terminal illness, loss and bereavement.” Resources offered on the si

newsletter, hospice locator, brochures, books, and videos.

• www.hospicefoundation.org/

• Phone: 800-854-3402; Fax: 202-638-5312; Office hours are 10:00 

• National hospice locator service is offered on the site and by ca

Chpt 26 1-17-03.p65 1519
520 U.S. Department of Health and Human Services • Health Resources and Services Administ

• E-mail: comments@hospicenet.org

Medicaid/Medicare Hospice Services: This site describes coverage an

pice through Medicaid.

• www.hhs.gov/medicaid/services/hospice.asp

National Prison Hospice Association: NPHA promotes excellence in 

ers who are approaching death. The stated purpose of NPHA is to assist 

professionals in their continuing efforts to develop high quality pati

management programs. The organization offer resources, a newslette

• www.npha.org/index.html

• Phone: 303-544-5923; Fax: 303-444-2824; E-mail: npha@npha.or

III. CARE FOR THE CAREGIVER

See Chapter 20 on Care for the Caregiver for a 

detailed description of caregiver web sites

The ARCH National Respite Network and Resource Center: The mi

is “to support service providers and families through training, technic

and research.” The center offers technical assistance, factsheets, and 

• www.chtop.com/arch/index.htm

• Respite Care for Children with HIV-related Symptoms factshee

www.chtop.com/archfs5.htm

• National Respite Locator Service: www.chtop.com/locator.htm

or call 800-773-5433

Caregiver.com: An informational and support web site for all disease

• www.caregiver.com

Caregiver Health: This American Medical Association site was “desig

and caregivers with information and tools for assessing caregiver hea

tional resources to assist in reducing the risks of caregiving.” It include

ment questionnaire offered in English and Spanish

• www.ama-assn.org/ama/pub/category/4642.html

Caregiving.com: An informational and support web site for caregivers 

tional packets.

• www.caregiving.com

Chpt 26 1-17-03.p65 1520
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

infections, and providing care and emotional support.

• www.hivatis.org/caring/

Empowering Caregivers: A web site for all diseases and age groups with a

• www.care-givers.com

Family Caregiver Alliance: This nonprofit organization addresses the 

ing long-term home care. The site offers fact sheets in English, Span

information, an online support group, and other resources for caregive

• www.caregiver.org

Friends’ Health Connection: A web site for all diseases and age group

matched for one-on-one support. (Membership fee)

• www.48friend.com

HealingWell.com: A web site for all diseases and age groups with an HI

resource directory.

• www.healingwell.com

Health Care Exchange Initiative: This web site, which specializes in 

tation on caregiver issues and organizes intercity AIDS caregiver exch

• www.hcei.org

National Family Caregivers Association: This web site for all diseases 

a newsletter, caregiver kits, and a resource locator service.

• www.nfcacares.org

Queernet.com: This web site for gay, lesbian, bisexual, and transge

online support group for HIV/AIDS caregivers.

• www.queernet.org

WebofCare.com: This informational and support web site for all disea

newsletter, and grief support groups.

• www.webofcare.com

Well Spouse Foundation: This organization for all diseases and age g

new caregivers, a national network of support groups, a newsletter, a

robins.”

• www.wellspouse.org

Chpt 26 1-17-03.p65 1521
522 U.S. Department of Health and Human Services • Health Resources and Services Administ

geg.

• www.acponline.org/public/h_care/index.html

Cancer Net: This extensive site, supported by the National Cancer Inst

and clinician resources on topics such as pain management and hospi

• www.cancernet.gov/

• Cancer Information Service, 1-800-4-CANCER (422-6237), Mond

a.m. to 4:30 p.m.; TTY: 1-800-332-8615.

National Comprehensive Cancer Network, Cancer Pain Treatment 

This guide was created in partnership with the American Cancer Soci

general public on how the major cancer centers in the US treat pain.

• www.nccn.org/patient_guidelines/pain_cancer/pain/1_introdu

• Call the NCCN at 1-888-909-NCCN or the ACS at 1-800-ACS-2345 

WHO Cancer Pain Relief, 2nd edition (1996): This publication provid

pain relief, and includes information on how pain medications are ava

• Report can be reached at www.who.int/ncd/cancer/publication

cancer_pain_relief.html

• To order a copy, check your nearest sales agent at: www.who.in

or WHO Headquarters, WHO, Marketing and Dissemination,

CH-1211 Geneva 27, Switzerland,

• Phone: +41 22 791 24 76; Fax: +41 22 791 48 57; E-mail: public

V. PEDIATRIC

A Death in the Family: Orphans of the HIV Epidemic. Carol Lev

information, call the United Hospital Fund’s Publication Program at (

them at 350 5th Avenue, 23rd Floor, New York, NY 10118.

American Academy for Pediatrics Policy Statement on Palliative 

statement was issued in August 2000, and “presents an integrated mod

care for children living with a life-threatening or terminal condition

barriers in pediatric palliative care, and makes recommendations for 

• www.aap.org/policy/re0007.html

• Journal reference: Committee on Bioethics and Committee on 

tive Care for Children. Pediatrics, 106: 351-7, 2000.

Chpt 26 1-17-03.p65 1522
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

velop an initiative in children’s hospice, called the Program for 

Children and their Families (PACC), to develop demonstration p

models of children’s hospice care that encourage the continuum 

common obstacles in quality of children’s hospice care. www.ch

• Toll Free Phone: 800-2-4-CHILD; Phone: 703-684-0330; Fax: (

chiorg@aol.com

• Note that PACC is trademarked

Elizabeth Glaser Pediatric AIDS Foundation: This non-profit organiz

ing research and programs in the care and prevention of HIV/AIDS in ch

grant, award, and fellowship applications, and other resources are ava

• www.pedaids.org/index.html

• Phone: 888-499-HOPE (4673); E-mail: info@pedAIDS.org

The Family Center: The Family Center works to create a more secur

children whose parents have life-threatening illness by providing com

cial services, education and research. Numerous books and materials 

• Phone: 212-766-4522

• www.thefamilycenter.org

The François-Xavier Bagnoud Center (FXB) at the University of 

New Jersey: FXB Center provides a model for the care of mother-to-c

ease. The program’s mission is to “deliver care that is community-base

focused, comprehensive and coordinated.” The program also conduc

training to health care providers.

• www.fxbcenter.org/

KIDSAID: This web site is a place for children who are experiencing 

picture, poems, etc. There are resources on the site for children and 

web site, GriefNet runs the site.

• www.kidsaid.com/

• kidsaid@griefnet.org

National Pediatric and Family HIV Resource Center: This center is 

of Medicine and Dentistry of New Jersey and is a resource for health a

sionals who serve children, adolescents, and families with HIV/AIDS

training and technical assistance, patient materials, and other resour

• www.pedhivaids.org/

Chpt 26 1-17-03.p65 1523
524 U.S. Department of Health and Human Services • Health Resources and Services Administ

WHO Cancer Pain Relief and Palliative Care in Children (1998): T

hensive approach to palliative care, this guide reviews pain manageme

social, spiritual, and psychological issues in palliative care. The book 

health care provider education, and policies and legislation related to 

• Report can be reached at www.who.int/ncd/cancer/p

ca_pain_relief_pall_care_in_children.html

• To order a copy, check your nearest sales agent at: www.who.in

or

WHO Headquarters, WHO, Marketing and Dissemination, CH-12

Switzerland,

• Phone: +41 22 791 24 76; Fax: +41 22 791 48 57; E-mail: public

VI. CLINICIAN EDUCATION

Education for Physicians on End-of-Life Care: Supported through 

Foundation grant, EPEC.net “is designed to educate all physicians on t

petencies required to provide quality end-of-life care.” The site educ

training curriculum, speakers list, resource guide, and electronic mail

• www.epec.net/

End-of-Life Nursing Education Consortium (ELNEC) Project: This 

the American Association of Colleges of Nursing and funded by a Rober

tion grant. The project goals are to both “develop a core of expert n

coordinate national nursing education efforts in end-of-life care.” A ni

available, along with a list of nurse educators, publications on nursing 

on-line newsletter.

• www.aacn.nche.edu/elnec/

• Phone: 202-463-6930, ext. 240

• End-of Life Care, a series of six 1-hour videotapes, offering contin

Produced by the American Association of Colleges of Nursing, th

Nursing Research, and the Association of Academic Health Cen

may be ordered at www.centernet-tv.com/net/endoflife.html or 

agement Television at 202-662-7285, ext. 5.

End-of-Life Physician Education Resource Center: EPERC is fund

Johnson Foundation, and is hosted by the Medical College of Wisconsi

to high quality information, conferences and educational materials on 

tional materials may be submitted for review, and a discussion board i

• www.eperc.mcw.edu/

• Phone: 414-456-4353; E-mail: eperc@mcw.edu

Chpt 26 1-17-03.p65 1524
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

• Phone: 415-561-6720; Fax: 415-561-6740; E-mail: info@iasusa.or

World Health Organisation: A fact sheet on palliative care can be do

website.

• www.who.int/hiv/topics/palliative/palliativecare/en/

VII. PROFESSIONAL ASSOCIATIONS

American Academy of Hospice and Palliative Medicine: AAHPM is a 

organization that provides education and clinical practice standards, p

with professional development of its members, and advocates for pub

bership organization, but most areas on the web site are available t

quarterly newsletter is provided with membership.

• www.aahpm.org/

• Phone: 847-375-4712; Fax: 877-734-8671; E-mail: aahpm@aahpm

• Self-training modules for physicians in palliative care, or UNIP

fered for these modules. Topics include pain management, ethic

HIV care, and pediatrics. www.aahpm.org/unipac’s.htm. Mod

through Kendall/Hunt Customer Service, Kendall/Hunt Publi

Westmark Drive, P.O. Box 1840, Dubuque, Iowa 52004-1840; w

Phone: 1-800-228-0810 (US) or 1-319-589-1000 (International); Fa

or 1-319-589-1046 (International)

American Academy of Pain Medicine: AAPM promotes quality of ca

through research, education, and advocacy. Career opportunities, CME

are available on the site.

• www.painmed.org/

• Phone: 847-375-4731; Fax: 847-375-6331; E-mail: aapm@amctec

American Board of Hospice and Palliative Medicine: ABHPM suppo

care for patients with advanced, progressive illness by offering a certi

and palliative medicine for physicians. ABHPM also has a newsletter a

on-line.

• www.abhpm.org/

• Phone: 301-439-8001; E-mail: mail@abhpm.org

American Psychiatric Association AIDS Resource Center: The Cen

training, resources, information, policies, and a network of clinical 

health dimensions of HIV/AIDS.”

• www.psych.org/aids/

Chpt 26 1-17-03.p65 1525
526 U.S. Department of Health and Human Services • Health Resources and Services Administ

order@appi.org; Internet: www.appi.org

The Association of Nurses in AIDS Care: ANAC states that it is a non

ing organization committed to fostering the professional development 

delivery of health care to persons infected or affected by HIV. In addit

health, welfare, and rights of all HIV infected persons. ANAC offers a ce

AIDS nurses and an annual conference. With membership, one receive

nal of ANAC along with other benefits.

• www.anacnet.org/

• Toll Free Number: 800-260-6780 or Phone: 330-762-5739

• Fax: 330-762-5813

• Email: anac@anacnet.org

Hospice and Palliative Nurses Association: The HPNA provides inf

promotes specializing and furthering professional development in pal

and facilitates the exchange of ideas in the field. This is a membership 

• www.hpna.org/

• National Board for Certification of Hospice and Palliative Nurs

certification exam for nurses wishing to specialize in hospice a

nursing. www.hpna.org/NBCHPN/

• Phone: 412-361-2470; Fax: 412-361-2425; E-mail: hpna@hpna.or

International Association of Physicians in AIDS Care: This compreh

cal management updates, conference coverage, provider resources an

tion. The organization also has a publication, International Associatio

Care Monthly.

• www.iapac.org/index.html

• iapac@iapac.org

• Phone: 312-795-4930

• Fax: 312-795-4938

International Association for the Study of Pain

• www.iasp-pain.org

• Email: iaspadmin@juno.com; Phone: 206-547-6409; Fax: 206-54

Physician Assistant AIDS Network: This not-for-profit organization 

continuing medical education, and symposia for PAs working in HIV/AI

are a newsletter, conference information, HIV/AIDS treatment inform

board.

• www.paan.org/index.htm

Chpt 26 1-17-03.p65 1526
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

American Psychological Association Office on AIDS: This office pro

ing, and technical assistance on various topics in HIV/AIDS and psyc

include coping, mental health services, public policy, graduate educat

• www.apa.org/pi/aids/homepage.html

• publicinterest@apa.org or Phone: 202-336-6042

Bereavement: A Magazine of Hope and Healing: This magazine is ava

by mail with a paid subscription. The magazine offers stories, poem

reaved persons, as well as articles from professionals from the field of 

tionally, the web site offers online support groups and memorials, a

topics such as bereavement in the workplace, anticipatory grief, and i

• www.bereavementmag.com/

• Phone: 888-60-4HOPE (4673); E-mail: grief@bereavementmag.

Coping with Grief, San Francisco AIDS Foundation: This informatio

to those dealing with loss and bereavement. It discusses the process o

• www.sfaf.org/aboutaids/grief.html

Dying Well: Provides resources and referrals to organizations to em

threatening illness and their families to live fully.

• www.dyingwell.org

• Missoula-Vitas Quality of Life Index: www.dyingwell.org/MVQOL

• Related book: Dying Well: The Prospect for Growth at the End-o

published by Putnam/Riverhead.

GriefNet: GriefNet is a web site that offers persons dealing with grief, 

groups and resources.

• www.rivendell.org/

Mental Health Care for People Living with or Affected with HIV/A

Substance Abuse and Mental Health Services Administration (SAM

• www.mentalhealth.org/cmhs/HIVAIDS/mhcarehiv.htm.

Mini Mental State Examination (MMSE): One of the most frequent

cal tests in the clinical evaluation of mental status changes.

• The full instrument is available from Psychological Assessment 

at 1-800-331-8378.

Chpt 26 1-17-03.p65 1527
528 U.S. Department of Health and Human Services • Health Resources and Services Administ

• Phone: 800-729-6686, TDD 800-487-4889

Recovering from the Loss of a Loved One to AIDS: Help for Surv

and Lovers Who Grieve, Katherine Fair Donnelly.

• Fawcett Books, 1995 (out of print), ISBN: 0595168604

IX. HIV/AIDS CLINICAL CARE

Aegis: A comprehensive web site of HIV information and resources. T

and treatment information, as well as a large searchable database for 

on topics such as palliative care, legal issues, and hospice. A very g

information from the mainstream press, professional journals, governm

lative sources.

• www.aegis.com/

A Guide to the Clinical Care of Women with HIV, Jean R Anderson, 

• Health Resources and Services Administration, 2001 edition

• Available online at www.hab.hrsa.gov/ , then click on the link fo

Or order by e-mail: womencare@hrsa.gov; by fax to the attention 

443-0791; or write to: Womencare, Parklawn Building, Room 11A-

Rockville, Maryland 20857, USA

AIDS info: This web site provides all the DHHS HIV treatment guidelin

become available.

• www.aidsinfo.nih.gov/

HIVDent: This site promotes high quality oral health care services to 

AIDS. It include information on the oral manifestations of HIV/AID

photographs. Educational materials are available for providers and peo

• www.hivdent.org/

HIV InSite: From the University of California San Francisco, this comp

information on the medical aspects of HIV/AIDS, prevention, policy, 

The AIDS Knowledge Base is a manual on HIV/AIDS treatment.

• www.hivinsite.ucsf.edu/InSite

HRSA HIV/AIDS Bureau: The web site of the Federal agency that adm

CARE Act funding (Health Resources and Services Administration, or 

links to palliative care information on this site. Additionally, the site h

care and HIV/AIDS drugs, grant applications, and resources.

• www.hab.hrsa.gov/

Chpt 26 1-17-03.p65 1528
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

• www.ask.hrsa.gov for an information distribution center,

or call 1-888-ASK-HRSA (275-4772)

Johns Hopkins AIDS Service: A comprehensive web site of HIV inf

including publications, medical education, provider and consumer int

ing answers to questions, and resources and information on managed 

vention, and treatment.

• www.hopkins-aids.edu/

• Click on publications for the manual Medical Management of H

MD, or call 800-787-1254 to order the manual.

• Click on publications for the newsletter Hopkins HIV Report, or 

HIV Report, PO Box 5252, Baltimore, MD 21224, Attn: Distributi

tion of the newsletter.

Medscape HIV/AIDS Page: Offers HIV/AIDS resources in CME, clinic

agement, conference coverage.

• www.medscape.com/Home/Topics/AIDS/AIDS.html

• Antiretroviral Reference Guide: This guide contains information 

mary tables, drug-drug combinations, antiretroviral resistance m

antiretroviral drug interactions, and TB medication/antiretrov

It can be viewed as an HTML file, downloaded in Adobe Acro

loaded for Palm Pilot. This file can be found under the “Clinic

the web site above or at www.medscape.com/Medscape/HIV/Tr

tu01/eng/pnt-eng.tu01.html

National HIV/AIDS Clinician Consultation Center: This service is 

California San Francisco with the AIDS Education and Training Cent

Technical assistance is included on the site along with the help lines 

tions listed below.

• www.ucsf.edu/hivcntr/

• Clinician Warmline for clinical consultations: 1-800-933-3413,

6:00 a.m.-5:00 p.m., Mon.-Fri.

• Post-exposure Prophylaxis (PEP) Hotline: 1-888-448-4911,

24 hours a day, 7 days a week

NIAID Database for Anti-HIV Compounds: This comprehensive dat

on anti-HIV drugs, including viral life cycle, chemical structures, resista

• www.niaid.nih.gov/daids/dtpdb/

University of Liverpool Drug Interactions Web site: This web site off

active information about drug interactions.

• www.hiv-druginteractions.org

Chpt 26 1-17-03.p65 1529
530 U.S. Department of Health and Human Services • Health Resources and Services Administ

• Quality of Life information on alternative therapies, psychosoc

financial and legal issues, fatigue, workplace issues. www.theb

National AIDS Hotline: A service sponsored by the Centers for Disease 

for general questions about HIV and AIDS.

• Phone: 1-800-342-2437, Spanish 1-800-344-7432, TDD 1-800-243

National Association of People with AIDS: NAPWA “advocates on b

with HIV and AIDS in order to end the pandemic and the human suffer

The organization offers publications, programs, education, and resour

HIV and AIDS.

• www.napwa.org/

• Phone: 202-898-0414; Fax: 202-898-0435; E-mail: napwa@napwa

Project Inform: A national project targeting consumers with up-to-dat

strategies for adherence, and other tools for people living with HIV.

• www.projinf.org/

• National HIV/AIDS Treatment Hotline: 1-800-822-7422 (toll-free 

or 415-558-9051 (in the San Francisco Bay Area or internationa

Monday–Friday, 9 a.m. - 5 p.m. and Saturday, 10 a.m. - 4 p.m. (P

XI. CULTURAL COMPETENCY

Assuring Cultural Competence in Health Care: Recommendations 

and an Outcomes-Focused Research Agenda: This project makes r

tional standards for culturally and linguistically appropriate services i

Office of Minority Health in the Department of Health and Human S

Spanish.

• www.omhrc.gov/clas/

Cultural Competence: A Journey: This publication is sponsored throu

and Services Administration’s Bureau of Primary Health Care. It describ

competency and the stories and experiences of several community prog

• Reprints may be ordered through www.ask.hrsa.gov or by callin

house at 1-888-ASK-HRSA (275-4772) or e-mail ask@hrsa.gov

Diversity Rx: Promotes cultural competency in health care for minori

cally diverse communities. The site discusses political, medical, legal, 

cultural competency, and offers an electronic newsletter, a Medical I

and References Guide, and a Multicultural Health Best Practices repo

• www.diversityrx.org

• rcchc@aol.com

Chpt 26 1-17-03.p65 1530
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

• Palliative care informational brochure (geared towards consumer

one languages: www.pallcare.asn.au/difflang.htm

• Phone: +61 8 8291 4137; Fax: +61 8 8291 4122; E-mail: pcare@

National Center for Cultural Competence: NCCC aims to increase th

programs to design, implement, and evaluate culturally competent ser

provides training and technical assistance, and exchanges and disse

cultural competence. It is sponsored by Georgetown University and H

• www.gucdc.georgetown.edu/nccc/

• Phone: 1-800-788-2066 or 202-687-5387; Fax: 202-687-8899;TDD 

cultural@georgetown.edu

XII. POLICY/ADVOCACY

Americans for Better Care for the Dying: Their stated goals are to 

reform, 2) explore new methods and systems for delivering care, an

through evidence-based understanding. Information on policy, news u

resources are available.

• www.abcd-caring.org/

• Phone: 202-895-9485; Fax: 202-895-9484, E-mail: info@abcd-car

Project on Death in America: The mission of this organization is to “u

the culture and experience of dying and bereavement through initiati

ship, the humanities, and the arts, and to foster innovations in the 

education, professional education, and public policy.” Information on 

and policy is available on the site.

• www.soros.org/death/

• Phone: 212-548-0150; E-mail: pdia@sorosny.org

XIII. INTERNATIONAL FOCUS

Association François-Xavier Bagnoud: AFXB is an international or

research, programs, and field work in areas such as palliative care, c

Africa, humanitarian rights, and pediatric HIV/AIDS care. The work i

services, research, and training.

• www.fxb.org/palliative/index.html

• Phone: (Switzerland) +41-217-961-302; (US) 617-432-3511, E-m

Chpt 26 1-17-03.p65 1531
532 U.S. Department of Health and Human Services • Health Resources and Services Administ

CDC Global AIDS Program Technical Strategies – Palliative Care: 

CDC that offers a strategic plan on implementing global AIDS strate

cusses some best practices and global models of palliative care in HIV

• www.cdc.gov/nchstp/od/gap/strategies/4_3_palliative_care.htm

Crossing Borders: Migration, Ethnicity and AIDS: Mary Haour-Kn

Editors.

• Bristol, PA: Taylor & Francis Inc, 1996.

• ISBN: 0 7484 03779, 07484 03787 pbk

The Enhancing Care Initiative ECI is a collaborative effort of the Har

AIDS Care Teams in Brazil, Puerto Rico, Senegal, South Africa and Th

initiative is to implement continuity of care programs that provide c

include prevention approaches with HIV counseling and testing, bas

and community-based care with care for the dying and care for caregi

• www.eci.harvard.edu

Global Health Council: The mission is “to mobilize effective action b

policies and resources, building networks and alliances among those w

and communicating innovative ideas, knowledge and best practices in 

their major health topics is HIV/AIDS. Global news updates, newsle

change are some of what is offered on the web site.

• www.globalhealth.org/

• E-mail: ghc@globalhealth.org

• For information on HIV/AIDS and advocacy, contact the Washin

1701 K Street, NW, Suite 600, Washington, DC, 20006-1503. Pho

Fax 202-833-0075

An Introduction to the Integrated Community-Based Home Care M

tape. Hospice Association of South Africa, 2001.

• Produced by ASI, email: magweni@kindsley.co.za

Hospice Uganda: This hospice is a model hospice under the Hospice A

initiated to promote the development of hospice in African countrie

palliative medicine services. Hospice Uganda has been offering servi

cancer and AIDS since 1993. In addition to the provision of comprehe

vices, Hospice Uganda provides education in palliative medicine, and 

of hospice in other African countries.

• www.hospice-africa.merseyside.org/hospice.html

Chpt 26 1-17-03.p65 1532
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

gration Project of the National Lawyers Guild, this manual provides a 

tailed presentation of issues related to immigrants and HIV. The ma

charge from the San Francisco AIDS Foundation, P.O. Box 426182, San 

• Phone: 415-487-3080; Fax: 415-487-3089.

• www.sfaf.org/policy/immigration/appendix_c.html

The Immigration and Refugee Services of America (IRSA) Medical 

gram: This program provides technical assistance to organizations th

with special health care needs. In the current phase of the program, 

tional and community based resettlement agencies to enhance organ

vide care for HIV-positive clients and to create partnerships with AID

• Phone: 202-797-2105

• Email: irsa@irsa-uscr.org

King’s College Department of Palliative Care and Policy/St. Christo

in London, England, this program provides a model for integrated pall

going research and evaluation of palliative care services takes place at 

education and training of professionals.

• www.kcl.ac.uk/kis/schools/kcsmd/palliative/top.htm

• Phone: +44 0 20 7346 3995; Fax: +44 0 20 7346 3864

• There is also a Hospice Information Service offered through St. C

A newsletter, fact sheets, and an international hospice locato

through the HIS.

• www.hospiceinformation.co.uk/, or Phone: + 44 0 20 8778 925

9345; E-mail: info@his2.freeserve.co.uk

Mildmay International Centre in Uganda: This centre near Kampala, 

bines a clinical outpatient service with a study centre to train and dev

care and management.” Description of the clinical services and trainin

the web site.

• www.mildmay.org.uk/UgandaCentre.html

• Phone: + 44 1702 394450; Fax: + 44 1702 394454; E-mail: mild

National Immigration Project of the National Lawyers Guild: Provi

migration advocates and a legal training packet designed for immigrat

as advice and information to AIDS service providers.

• Phone: 617-227-9727

• Email: nip@igc.apc.org

Chpt 26 1-17-03.p65 1533
534 U.S. Department of Health and Human Services • Health Resources and Services Administ

DC 20005; Phone: 202-842-2939; Fax: 202-842-7646; www.synger

XIV. COMPLEMENTARY AND ALTERNATIVE THERA

Bastyr University: Bastyr offers academic training and research in the 

Their offerings include fields such as nutrition, acupuncture, and herb

sity has an AIDS Research Center which is funded under grants from 

Allergy and Infectious Diseases (NIAID) and the National Center for C

native Medicine (NCCAM).

• www.bastyr.edu/

• click on “Research Institute” for information on their AID

www.bastyruniversity.org/research/buarc/

• Phone: 425-823-1300; Fax: 425-823-6222

National Center for Complementary and Alternative Therapies: Th

tional Institutes for Health, studies complementary and alternative h

research. They also provide training for researchers and disseminate in

mentary and alternative medicines.

• www.nccam.nih.gov/

• Phone: 1-888-644-6226 or 301-231-7537, ext. 5 (outside the U.S.)

Fax: 301-495-4957

Chpt 26 1-17-03.p65 1534
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

Web site/Address:

Primary Audience*

Pain Management /

Assessment

Symptom Management

Spiritual/Psychosocial

Needs

Provider Education

Patient/Provider

Communication

Hospice

Respite

Ethics

Grief and Bereavement

International/Global

Perspective

Cancer-specific

HIV/AIDS Information

Internet Sites on Palliative Care and Related Topics

Magda Barini-Garcia, MD, MPH and Demia Sundra, MPH

Aegis Pt, Pr,www.aegis.com/ GpAIDS info Prwww.aidsinfo.nih.gov/American Academy of Hospice and Palliative Medicine Prwww.aahpm.org/American Academy of Pain Medicine Prwww.painmed.org/American Board of Hospice and Palliative Medicine Prwww.abhpm.org/

Chpt 26 1-17-03.p65 1535
536 U.S. Department of Health and Human Services • Health Resources and Services Administ

Web site/Address: 

American Psychological Association Office on AIDS Pr www.apa.org/pi/aids/homepage.htmlAmericans for Better Care for the Dying Adwww.abcd-caring.org/The ARCH National Respite Network and Resource Center Pr, Pt, www.chtop.com/archbroc.htm Cr Association Francois-Xavier Bagnoud Pr, Pt, www.fxb.org/palliative/index.html GpThe Association of Nurses in AIDS Care Prwww.anacnet.org/

Primary Audience*

Pain Management

Assessment

Symptom Management

Spiritual/Psychosocial

Needs

Provider Education

Patient/Provider

Communication

Hospice

Respite

Ethics

Grief and Bereavement

International/Global

Perspective

Cancer-specific

HIV/AIDS Information

/

Internet Sites on Palliative Care and Related Topics

Continued

Chpt 26 1-17-03.p65 1536
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

Web site/Address:

The Body Pt 

www.thebody.com Cancer Net through NCI Pt, Pr, www.cancernet.gov/ Gp,CrCaregiver.com Crwww.caregiver.comCaregiving.com Cr www.caregiving.comCaregiver Health Pr, Crwww.ama-assn.org/ama/pub/category/4642.html

Primary Audience*

Pain Management

Assessment

Symptom Management

Spiritual/Psychosocial

Needs

Provider Education

Patient/Provider

Communication

Hospice

Respite

Ethics

Grief and Bereavement

International/Global

Perspective

Cancer-specific

HIV/AIDS Information

Internet Sites on Palliative Care and Related Topics

Continued

Chpt 26 1-17-03.p65 1537
538 U.S. Department of Health and Human Services • Health Resources and Services Administ

Web site/Address: 

CDC Global AIDS Program Technical Strategies - Palliative Care Ad,www.cdc.gov/nchstp/od/gap/strategies/4_3_palliative_care.htm RThe Center to Advance Palliative Care Pr,www.capcmssm.org/index.cgi AdChildren’s Hospice International Pt, Pr, www.chionline.org/ Ad, FdCoping with Grief, San Francisco AIDS Foundation Gpwww.sfaf.org/aboutaids/grief.htmlDiversity Rx Pr, Gp, www.diversityrx.org Ad

Primary Audience*

Pain Management /

Assessment

Symptom Management

Spiritual/Psychosocial

Needs

Provider Education

Patient/Provider

Communication

Hospice

Respite

Ethics

Grief and Bereavement

International/Global

Perspective

Cancer-specific

HIV/AIDS Information

/

Internet Sites on Palliative Care and Related Topics

Continued

Chpt 26 1-17-03.p65 1538
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

Web site/Address:

Elizabeth Glaser Pediatric AIDS Foundation Ad, Fd, 

www.pedaids.org/index.html R, GpEmpowering Caregivers Crwww.care-givers.comEnd-of-Life Nursing Education Consortium (ELNEC) Project Pwww.aacn.nche.edu/elnec/End of Life Physician Education Resource Center Prwww.eperc.mcw.edu/The Family Caregiver Alliance Cr, Adwww.caregiver.org

Primary Audience*

Pain Management /

Assessment

Symptom Management

Spiritual/Psychosocial

Needs

Provider Education

Patient/Provider

Communication

Hospice

Respite

Ethics

Grief and Bereavement

International/Global

Perspective

Cancer-specific

HIV/AIDS Information

Internet Sites on Palliative Care and Related Topics

Continued

Chpt 26 1-17-03.p65 1539
540 U.S. Department of Health and Human Services • Health Resources and Services Administ

Web site/Address: 

The François-Xavier Bagnoud Center Pr, Pt www.fxbcenter.org/Friends’ Health Connection Crwww.48friend.comGlobal Health Council Ad, Gpwww.globalhealth.org/ Fd, PrGriefnet Gpwww.rivendell.org/The Growth House, Inc. Pt, Pr www.growthhouse.org/ Gp, Cr

Primary Audience*

Pain Management /

Assessment

Symptom Management

Spiritual/Psychosocial

Needs

Provider Education

Patient/Provider

Communication

Hospice

Respite

Ethics

Grief and Bereavement

International/Global

Perspective

Cancer-specific

HIV/AIDS Information

/

Internet Sites on Palliative Care and Related Topics

Continued

Chpt 26 1-17-03.p65 1540
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

Web site/Address:

HealingWell.com Cr

www.healingwell.comHIV and Immigrants: A Manual for AIDS Service Providers Pt, Pr www.sfaf.org/policy/immigration/appendix_c.htmlHIVDent Pr, Pt www.hivdent.org/HIVInSite Pr, Pt, www.hivinsite.ucsf.edu Gp, Ad Hospice and Palliative Nurses Association Prwww.hpna.org/

Primary Audience*

Pain Management /

Assessment

Symptom Management

Spiritual/Psychosocial

Needs

Provider Education

Patient/Provider

Communication

Hospice

Respite

Ethics

Grief and Bereavement

International/Global

Perspective

Cancer-specific

HIV/AIDS Information

Internet Sites on Palliative Care and Related Topics

Continued

Chpt 26 1-17-03.p65 1541
542 U.S. Department of Health and Human Services • Health Resources and Services Administ

Web site/Address: 

HRSA HIV/AIDS Bureau Gp, Pr, www.hab.hrsa.gov/ Pt, Fd International AIDS Society-USA Prwww.iasusa.org/International Association for Hospice and Palliative Care Pr, Pt www.hospicecare.com/International Association for the Study of Pain Prwww.iasp-pain.orgInternational Association of Physicians in AIDS Care Prwww.iapac.org/index.html

Primary Audience*

Pain Management /

Assessment

Symptom Management

Spiritual/Psychosocial

Needs

Provider Education

Patient/Provider

Communication

Hospice

Respite

Ethics

Grief and Bereavement

International/Global

Perspective

Cancer-specific

HIV/AIDS Information

/

Internet Sites on Palliative Care and Related Topics

Continued

Chpt 26 1-17-03.p65 1542
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

Web site/Address:

KIDSAID Pt 

www.kidsaid.com/Last Acts Pt, Pr, www.lastacts.org/ Ad Medicaid/Medicare Hospice Services Gpwww.hcfa.gov/medicaid/Itc2.htm Pt, PrMedscape HIV/AIDS Page Pr www.medscape.com/Home/Topics/AIDS/AIDS.html Mental Health Care for PLWHA: A Practical Guide Pt, Prwww.mentalhealth.org/cmhs/HIV AIDS/mhcarehiv.htm Cr

Primary Audience*

Pain Management /

Assessment

Symptom Management

Spiritual/Psychosocial

Needs

Provider Education

Patient/Provider

Communication

Hospice

Respite

Ethics

Grief and Bereavement

International/Global

Perspective

Cancer-specific

HIV/AIDS Information

Internet Sites on Palliative Care and Related Topics

Continued

Chpt 26 1-17-03.p65 1543
544 U.S. Department of Health and Human Services • Health Resources and Services Administ

Web site/Address: 

National Center for Complementary and Alternative Therapies Pr, Pt,www.nccam.nih.gov/ R, FdNational Center for Cultural Competence Pr, www.gucdc.georgetown.edu/nccc/ AdNational Clearinghouse for Alcohol and Drug Information Gp www.health.org/Nat. Comp. Cancer Network, Pain Treatment Guidelines for Patients Gpwww.nccn.orgNational Family Caregivers Association Crwww.nfca.org

Primary Audience*

Pain Management

Assessment

Symptom Management

Spiritual/Psychosocial

Needs

Provider Education

Patient/Provider

Communication

Hospice

Respite

Ethics

Grief and Bereavement

International/Global

Perspective

Cancer-specific

HIV/AIDS Information

/

Internet Sites on Palliative Care and Related Topics

Continued

Chpt 26 1-17-03.p65 1544
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

Web site/Address:

National Pediatric and Family HIV Resource Center Pr, Pt 

www.pedhivaids.org/National Prison Hospice Association Pr, Pt, www.npha.org/index.html Gp, AdNIAID Database for Anti-HIV Compounds Prwww.niaid.nih.gov/daids/dtpdb/The Orphan Project Pr, Ad www.aidsinfonyc.org/orphan/On Our Own Terms; Bill Moyers on Dying Pt, Gp www.pbs.org/wnet/onourownterms/

Primary Audience*

Pain Management

Assessment

Symptom Management

Spiritual/Psychosocial

Needs

Provider Education

Patient/Provider

Communication

Hospice

Respite

Ethics

Grief and Bereavement

International/Global

Perspective

Cancer-specific

HIV/AIDS Information

Internet Sites on Palliative Care and Related Topics

Continued

Chpt 26 1-17-03.p65 1545
546 U.S. Department of Health and Human Services • Health Resources and Services Administ

Web site/Address: 

Partnership for Caring, Inc. Gp, www.partnershipforcaring.org/HomePage/ Pt, AdPhysician Assistant AIDS Network Prwww.paan.org/index.htmProject Inform Ptwww.projinf.org/Project on Death in America Ad,www.soros.org/death/ FdPromoting Excellence in End-of-Life Care R, Ad, www.promotingexcellence.org/ Fd, Pr 

Primary Audience*

Pain Management

Assessment

Symptom Management

Spiritual/Psychosocial

Needs

Provider Education

Patient/Provider

Communication

Hospice

Respite

Ethics

Grief and Bereavement

International/Global

Perspective

Cancer-specific

HIV/AIDS Information

/

Internet Sites on Palliative Care and Related Topics

Continued

Chpt 26 1-17-03.p65 1546
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

Web site/Address:

Symptom Research: Methods and Opportunities Pr, R

www.symptomresearch.orgToolkit of Instruments to Measure End-of-Life Care Pr, Rwww.chcr.brown.edu/pcoc/toolkit.htmUNAIDS Pr, R,www.unaids.org/ AdUniversity of Liverpool Drug Interactions Website Prwww.hiv-druginteractions.orgWell Spouse Foundation Crwww.wellspouse.org

Primary Audience*

Pain Management

Assessment

Symptom Management

Spiritual/Psychosocial

Needs

Provider Education

Patient/Provider

Communication

Hospice

Respite

Ethics

Grief and Bereavement

International/Global

Perspective

Cancer-specific

HIV/AIDS Information

Internet Sites on Palliative Care and Related Topics

Continued

Chpt 26 1-17-03.p65 1547
Chpt 26 1-17-03.p65 1

548
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

INTRODUCTION

■ Patients receiving palliative care for HIV disease have the potential 

actions, given the complex drug regimens used to treat both early a

disease. It is estimated that at any point, up to 50% of patients in pa

recipients of highly active antiretroviral therapy (HAART) which ofte

hibitors (PIs) along with other antiretroviral agents, namely the nucleos

inhibitors (NRTIs, or nukes) and the non-nucleoside reverse transcrip

or non-nukes). All protease inhibitors as well as all currently available 

by the cytochrome P450 (CYP) isoenzymes and are therefore expected 

number and variety of drug-drug interactions.

As providers attempt to palliate advancing HIV disease, they may n

tients—along with antiretroviral agents—medications for pain; insom

fatigue/weakness; GI disturbances including nausea, vomiting, diarrhea

and reflux esophagitis; dyspnea; pruritis; fever; anxiety/depression; co

host of other symptoms. All of these medications may need to be admin

other co-morbid conditions such as hepatitis; PI-associated c

hypertriglyceridemia, hyperglycemia, lipodystrophies and HIV-associ

the opportunistic infections that are the hallmark of advanced HIV di

ther surprising that drug-drug as well as drug-disease interactions beco

ations as patients advance into palliative care, nor that optimizing th

can become exceedingly complex and overwhelming.

Providers who care for people with HIV/AIDS must constantly keep 

ments in antiretroviral drug treatment. The HIV/AIDS treatment guid

dated and the most current guidelines can be found at the AIDS inf

Department of Health and Human Services, at:

www.aidsinfo.nih.gov/

Justina Edmunds-Ogbuokiri, PharmD, FASCP

Chpt 27 1-17-03.p65 1549
550 U.S. Department of Health and Human Services • Health Resources and Services Administ

follows:

• Table 27-1: Effects of food on antiretroviral agents ..............

• Table 27-2: Common inducers of cytochrome P450 enzyme 

• Table 27-3: Common inhibitors of cytochrome P450 enzyme 

• Table 27-4: Common substrates of 3A4 and 2D6 isoenzymes 

• Table 27-5: Results of drug interaction studies in the prese

of ritonavir, the most potent CYP-450-modifying protease in

• Table 27-6a: Medications known to prolong QTC interval....

• Table 27-6b: Clinical monitoring for drugs that may prolong 

• Table 27-7: HIV-related drugs with overlapping toxicities ...

• Table 27-8: Drug interactions with anti-PCP agents .............

• Table 27-9: Comorbid conditions associated with substance 

• Table 27-10: Side effects of ecstasy (MDMA) that may be ex

when used with conventional drugs with similar side effect

• Table 27-11: Metabolic pathways of frequently abused drug

potentially affected by HIV-1 protease inhibitors .................

• Table 27-12: Summary of significant drug-drug interactions

in palliative care of HIV disease .............................................

• Table 27-13: Common red flag medications often

used in palliative care of HIV disease ....................................

• Table 27-14: Advice to patients: red flag medications

(A sheet to photocopy and discuss with patients)................

PHARMACOKINETIC PRINCIPLES

■ Application of basic pharmacokinetic principles can be useful for 

relevant drug-drug interactions in the management of advanced HIV 

cally, there are two broad classes of drug interactions:

• Pharmacokinetic interactions

• Pharmacodynamic interactions

Interactions are described as pharmacokinetic when the action of on

concentration of another drug by altering any of the following process

sorption, Distribution, Metabolism and Excretion (the LADME syste

the study of the processes of drug action through these various proces

Chpt 27 1-17-03.p65 1550
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

indinavir (Crixivan). Since fluconazole (Diflucan) is readily absorbe

pH, it is often the azole of choice when an azole antifungal is indica

several opportunistic infections.

Pharmacodynamic interactions are those interactions that may alte

sponse expected from use of the drugs, by altering the efficacy and of

The interaction could be synergistic and mostly positive (e.g., the p

sponse seen when zidovudine is combined with lamivudine). Converse

and mostly negative (e.g., the additive bone marrow suppression caused 

and ganciclovir; nephrotoxicity caused by combining cidofovir (Visti

(Fungizone); or the neuropathy caused by stavudine (Zerit) combined 

Videx-EC).

DRUG-DISEASE INTERACTIONS

■ Drug interactions can arise as a result of changes due to HIV diseas

HIV disease advance in their illness, oral absorption of foods and dru

due to changes in gastric pH that accompany HIV enteropathy, a synd

effect of advanced HIV disease on the gastrointestinal (GI) system. D

mon in HIV disease and may result from a variety of causes: GI disturba

of several of the most commonly used antiretroviral agents; presence o

tic organisms; and bacterial, protozoal and viral infections that tend to 

disease advances and the immune system weakens. The occurrence o

frequent and poorly controlled, as in patients with cryptosporidiosis—

tion of all drugs because of the decreased transit time and may cause 

efficacious. This will lead subsequently to less than optimal clinical 

instance may predispose the patient to subtherapeutic drug levels th

gence of resistant strains of the virus in patients still taking antiretrov

People with HIV in palliative care are more likely to be susceptible to ad

in the early stages of HIV disease. For example, patients in palliative ca

allergic reactions to sulfonamides and other drugs. Another physiologic

ing HIV disease is malabsorption, which is the hallmark of enteropa

patient to changes in body weight that often reflect changes in the vo

tion of both fat and muscle tissue. This in turn may affect the efficacy o

efficacy, for example, the agents used in the treatment of tuberculo

avium complex (MAC). Also frequently reported at this stage of illnes

albumin, which in turn may alter the efficacy of drugs such as phen

management of patients with toxoplasmosis or sulfamethoxazole when 

and in the prophylaxis of patients with pneumocystis carinii pneumo

Other changes also occur in drug metabolism with advancing disease

due to HIV-related biliary disease or to hepatitis—frequently a conc

population, especially patients who were injection drug users (IDUs

Chpt 27 1-17-03.p65 1551
552 U.S. Department of Health and Human Services • Health Resources and Services Administ

and cidofovir, antifungal agents such as amphotericin B, and antibac

aminoglycosides.

Changes in immune status that may affect drug responses to antimy

(such as the tuberculostatics) or management of opportunistic infec

frequently been reported in patients with advanced disease. As a gen

creased incidence of drug toxicity as well as drug sensitivity in patients 

with use of the neuroleptics (chlorpromazine and prochlorperazine)— 

decrease from usually recommended doses in order to avoid toxicity.

Signs of Drug-Drug Interaction in a Patient with HIV Dise

As a general rule, patients experiencing exaggerated toxicities on us

or manifesting treatment failure in the absence of factors such as resis

compliance may be suffering from an unidentified drug-drug interactio

patient’s medication profile is necessary in order to monitor for such 

cians should become familiar with the agents most often associated w

interactions and with the measures to circumvent these interactions w

Regimens with enzyme inducers such as rifampin or enzyme inhibitors 

be noted and checked against a list of other agents metabolized by thos

(see Table 27-14, Advice to Patients: Red Flag Medications, at the end 

nately, the majority of drug-drug interactions are minor in nature and 

changes to the patient’s drug regimen. However, the minority of drug 

clinically important can offset treatment goals and outcomes in pat

unaddressed, leading to patients receiving suboptimal levels of vario

ments failing, often due to emergence of drug-resistant strains of the v

Drug-Food Interactions of Clinical Significance

It is well established that the presence or absence of food or certa

cantly affect the bioavailability of a number of medications. A variety 

changes in pH, formation of unabsorbable cation complexes, increase

interference with gut metabolism as well as a decrease in the motility 

Table 27-1 lists some of the more common food-drug interactions with 

Chpt 27 1-17-03.p65 1552
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

Interactions Involving Azole Antifungals, Didanosine and 

Interactions of significance with azole antifungals, didanosine and o

ate HIV-related disorders are presented in this section, along with stra

interactions. For more detailed guidance, consult the most recent packa

and the various drugs.

Ketaconazole (Nizoral) and itraconazole (Sporonox) with gastric ac

crease in gastric pH (due to agents such as antacids, H2

 antagonists, pro

non-enteric-coated formulations of didanosine) impairs absorption of 

sorption is optimal when gastric pH is low. When prescribed together, did

must be taken two hours apart or an alternative antifungal agent shou

Abacavir (Ziagen)

Nevirapine (Viramune)

Delavirdine (Rescriptor)

Saquinavir HGC Has no foo

(hard gel capsule) taken with 

Amprenavir (Agenerase) Can be tak

regard to m

should be a

Antiretroviral agents Saquinavir soft gel capsule Levels incr

whose blood levels are (Fortovase) with food. 

increased by the large meal

presence of food Ritonavir (Norvir) Levels incr

Take with f

this may im

Nelfinavir (Viracept) Levels incr

Take with m

Tenofovir (Viread) Optimal ab

in the pres

Antiretroviral agents Didanosine (ddI, Videx) Take on an 

whose blood levels stomach a 

are decreased by food before or t

Levels dec

taken with 

Indinavir (Crixivan) Levels dec

Take 1 hou

meals; may 

a low fat m

Source: Adapted from Guidelines for the Use of Antiretroviral Agents in HIV-Infected Adults and A

Department of Health and Human Services (DHHS) and the Henry J. Kaiser Family Foundation, Fe

the Web at www.hivatis.org

Chpt 27 1-17-03.p65 1553
554 U.S. Department of Health and Human Services • Health Resources and Services Administ

PIs and NNRTIs with azoles: As a general rule, use of ketoconazole wi

advised due to a large number of potentially significant drug-drug i

(Diflucan) is preferred. (See Tables 27-2 and 27-3.)

• Indinavir:

Levels are increased 68%; reduce indinavir dose to 600 mg q 8 h; 

three-fold, no dose change required.

• Ritonavir:

Levels are increased more than three-fold; use less than 200 mg 

• Amprenavir:

Levels are increased 31% and ketoconazole levels increased 44%

clear.

• Nelfinavir:

No dosage change.

• Nevirapine:

Levels are increased 15% to 30% and ketoconazole levels decreas

is not recommended.

• Efavirenz:

Interactions between ketoconazole and efavirenz have not been 

dations can be made at present.

Ketoconazole and other drugs: Rifampin decreases activity of both dru

of ketoconazole; terfenadine and cisapride (both now removed from 

tricular arrhythmias and concurrent use should be avoided.

Didanosine: Didanosine buffered formulations usually cause problem

cations whose absorption are pH-sensitive. Didanosine can decrease ab

ketoconazole, dapsone and delavirdine (Rescriptor) because of increas

decrease absorption of the quinolones and tetracyclines by chelation 

the calcium and magnesium ions contained in the buffer.

Oral fluoroquinolones: With oral fluoroquinolones, patients should 

emental minerals and heavy nutritional supplements; take fluoroquino

six hours after these items.

Chpt 27 1-17-03.p65 1554
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

sible for the metabolism of almost all clinically useful medications. T

designated as CYP1A2, CYP2A6, CYP2B6, CYP2C9, CYP2C19, CYP2D

Though they are somehow related and share many general features, e

strates for which it is specific and so metabolizes only specific drugs an

enzymes involved in drug metabolism are found not only in the liver, 

lungs, brain, small intestine and placenta.

Enzymes of the CYP450 system are responsible for the oxidative metab

ied number of compounds including, most importantly, the antiretroviral 

several drugs used in the management of opportunistic infections in 

many of the newer serotonin-specific reuptake inhibitors (SSRIs) and o

endogenous substances such as steroids and prostaglandins, environm

components. The primary role of the isoenzymes in drug metabolism is 

water-soluble and less fat-soluble, so that biliary excretion will take p

actions of these enzymes can affect the amount of active drug in the bod

changes can be positive, enhancing efficacy, or negative, enhancing tox

Role of the Cytochrome P450 3A4 (CYP3A4)

CYP3A is both the most abundant and clinically significant family 

zymes. The CYP3A consists of three major enzymes, CYP3A4 being the o

ciated with drug interactions. The most notable inducers o

glucocorticosteroids, rifampin, carbamazepine, phenobarbital, phe

efavirenz. Notable CYP3A4 inhibitors include erythromycin, clarithr

azithromycin), ketoconazole, verapamil, and grapefruit juice among o

Ritonavir (Norvir) is the most potent inhibitor of the CYP3A4 system w

other PIs and indeed to all other drugs, generally. Indinavir and nelfina

of inhibition while saquinavir and amprenavir appear to be the least 

Among the NNRTIs, delavirdine is a potent irreversible inhibitor of this 

the only drug that has been shown to affect levels of ritonavir, incre

Curve (AUC) by 60% in patients maintained on a regimen of ritonavir 

Recent studies have shown that both ritonavir and nelfinavir can ac

inhibitors. Though this feature is not completely understood, affinity 

two compounds bind with such high affinity that it becomes impossible 

to the enzyme; hence inhibiting access to the enzymes while inducing 

Drug Interactions with Ritonavir and

Other Substrates of the CYP3A4 System

In relation to CYP3A4, there are a number of clinically significan

with which providers must become conversant. For the past several 

the powerful inhibitor of enzymes of the cytochrome P450 system, has 

of other PIs, mostly saquinavir (Fortovase), indinavir (Crixivan) and a

Chpt 27 1-17-03.p65 1555
556 U.S. Department of Health and Human Services • Health Resources and Services Administ

studies so far completed indicate that the profile of drug-drug interactio

be avoided for ritonavir are mostly the same for the combination o

(Kaletra).1

There have been reports of excessive drops in blood pressure following 

into the therapy of a hypertensive subject stabilized on a calcium c

verapamil. Other drugs to watch out for include the proarrhythmic ag

sive first-pass metabolism such as terfenadine, astemizole and cisap

HMG-C0A reductase inhibitors—drugs that are frequently pres

antiretroviral therapy who develop lipid abnormalities—as well as tr

often used to alleviate anxiety or to treat insomnia.

Drug-Drug Interactions between Psychotropics and Antire

Several of the medications used to treat mood and anxiety disord

cytochrome P450 enzyme system and as such are prone to interact wit

other drugs used for the treatment of opportunistic infections or the s

rological disorders that may accompany advancing HIV disease. Som

medications may be either substrates, inducers or inhibitors of this sa

receiving these medications concomitantly, the need for awareness a

garding drug-drug as well as drug-disease interactions of significance h

cently, these concerns, though not limited to people with HIV, have b

reports of sudden cardiac deaths due to unexpected ventricular ar

pointes) in patients on some antipsychotic medications, who were conc

of the newer antihistamines (terfenadine, astemizole), some of the n

newer antiarrhythmics (amiodarone, sotalol, fleicanide), some macro

some newer quinolones. The purpose of this section of the discussion 

issues associated with drug-drug interactions of clinical significance b

agents and drugs used in psychiatry.

Specific Interactions between Some Antidepressants,

Antipsychotics and Antiretroviral Agents

Why do interactions occur among some antidepressants, antipsychotic 

agents? Clinicians prescribing drugs for patients with HIV must be aw

tential for interactions that exists between some of the PIs (especially r

side antiretroviral agents (especially efavirenz) and psychotropic drugs

varying degrees of inhibition of the cytochrome P450 enzyme system re

oxidative metabolism that occurs in the liver. Ritonavir in particular i

inhibitors of the various P450 isoenzymes, especially CYP2D6 and CY

sible for metabolizing the benzodiazepines, some neuroleptics and bot

antidepressants.

Chpt 27 1-17-03.p65 1556
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

Table 27-2: Common Inducers of Cytochrome P450 Enzym

Enzyme Known Inducers

CYP3A4 Carbamazepine (Tegretol), rifampin (Rifadin), ph

(Dilantin), efavirenz (Sustiva), nevirapine (Viramu

rifapentine, troglitazone (Rezulin)

CYP1A2 Cigarette smoke, ritonavir (Norvir), omeprazole (P

smoked foods, cruciferous vegetables

CYP2C9 Carbamazepine (Tegretol), ethanol, phenytoin (Di

(Mycobutin), ritonavir (Norvir), rifampin (Rifadin

CYP2C19 Rifabutin (Mycobutin), rifampin (Rifadin)

CYP2D6 Pregnancy

CYP2E1 Ethanol, ritonavir (Norvir), isoniazid (INH)

Table 27-3: Common Inhibitors of Cytochrome P450 Enzym

Enzyme Known Inhibitors

CYP3A4 Ritonavir (Norvir), nelfinavir (Viracept), amprenav

indinavir (Crixivan), propoxyphene (Darvon), saqu

ketoconazole (Nizoral), itraconazole (Sporonox), e

juice, nefazodone (Serzone), fluvoxamine (Luvox)

diltiazem (Cardizem), verapamil (Calan), clarithro

omeprazole (Prilosec)

CYP1A2 Ciprofloxacin (Cipro), grepafloxacin (Raxar), fluvo

fluoxetine (Prozac), nefazodone (Serzone), enoxac

CYP2C9 Amiodarone (Cordarone), clopidrogel (Plavix), flu

fluvoxamine (Luvox), fluoxetine (Prozac), flucona

miconazole (Monistat), metronidazole (Flagyl), tr

sulfamethoxazole (Bactrim/Septra)

CYP2C19 Ticlopidine (Ticlid), fluvoxamine (Luvox), fluoxeti

CYP2D6 Ritonavir (Norvir),* sertraline (Zoloft), fluoxetine 

(Paxil), quinidine, thioridazine (Mellaril), cimetid

amiodarone (Cordarone), diphenhydramine (Bena

(Haldol), ticlopidine (Ticlid)

CYP2E1 Cimetidine (Tagamet), isoniazid (INH), watercres

* the only PI with CYP2D6 inhibitory activity

Chpt 27 1-17-03.p65 1557
558 U.S. Department of Health and Human Services • Health Resources and Services Administ

Macrolides SSRIs

Methadone Haloperidol

Risperidone Lovastatin (

Quinidine Simvastatin 

Sildenafil (Viagra) Atorvastatin 

Cerivastatin 

Fluvastatin 

Pravastatin 

Dosage Adjustments for the SSRIs

As a class, the SSRIs have varying inhibitory effects on CYP450 isoen

implications. Most of the research is still ongoing and interactions re

vidual SSRI and the P450 system may differ from one source to the ot

Serafem) and its metabolite appear to inhibit CYP2D6 and CYP3A4, w

CYP2D6. Fluvoxamine (Luvox) inhibits all of the major isoenzymes and 

a result of this, it appears to have the greatest propensity for drug-dr

cally and most probably clinically, as well. Despite its potent inhibition 

CYP2D6 isoenzyme, paroxetine (Paxil) may be regarded as the least pr

interaction potential from a clinical standpoint in comparison to 

fluvoxamine (Luvox).7

The SSRIs have a wide therapeutic window, without the danger of ov

the TCAs. Nonetheless, as a general rule with the SSRIs and TCAs, d

built up gradually; initial doses should be decreased 50% to 66% and 

until the desired response is obtained.8

SSRIs and nefazodone have been reported to increase serum levels of 

ticularly through inhibition of CYP3A4; the clinical significance of this i

clarification. Before starting ritonavir, doses of most neuroleptics shou

patients monitored closely; this is in anticipation of ritonavir-induced 

increase levels of such neuroleptics. The other protease inhibitor

saquinavir and amprenavir as well as the NNRTIs efavirenz, nevirapin

much fewer effects on psychotropic drugs but may also inhibit CYP3A

Pimozide (Orap) and triazolam (Halcion) are contraindicated with th

All SSRIs can cause additive serotonergic effects when combined with M

sibutramine, tryptophan, sumatriptin, nefazodone, venlaxafine, fenflur

tramadol and St. John’s wort.4

Chpt 27 1-17-03.p65 1558
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

leading to an increase or decrease of their therapeutic effect or cau

adverse effects. The other involves psychotropic agents that increase th

the efficacy of protease inhibitors. Most of the currently available, new

are substrates for cytochrome P450 enzyme system isoenzymes.

Substrates can simply be described as substances that are amenable to 

this cytochrome P450 enzyme system of the liver. A drug or chemical su

of three relationships to the CYP450 enzyme system; it can be a sub

inhibitor. Inhibitors of the CYP system are medications or chemical sub

remedies, which may cause a decrease in the volume of enzymes produ

ing the metabolism of such drugs and thereby increasing their levels.

This is the basis for the use of ritonavir as a PI enhancer in dual prote

for instance, and nefazodone are inhibitors of many CYP450 isoenzyme

administered concomitantly with other agents—such as the PIs

nonantiretroviral agents which may also be substrates, inducers or inhib

drug accumulation can occur, leading to potentially dangerous and s

toxicities. Inhibitors of the CYP450 enzymes such as the azole antifunga

itraconazole and to a much lesser extent fluconazole (hence making it 

disease) and erythromycin will cause a decrease in the clearance of s

(Celexa), terfenadine, midazolam (Versed), and triazolam (Halcion) (

the February 2001 DHHS Guidelines for Treatment of HIV in Adults and 

cardiac arrhythmias and sudden and unexplained deaths.

Chpt 27 1-17-03.p65 1559
560 U.S. Department of Health and Human Services • Health Resources and Services Administ

Bupropion (Wellbutrin) Increased risk of bupropion to

seizures. Avoid concomitant u

Clozapine (Clozaril) Increased risk of clozapine tox

agranulocytosis.

ECG changes and seizures.

Desipramine (Norpramin) 145% increase in desipramine 

adjustment needed, monitor m

Benzodiazepines Increased risk of prolonged se

depression.

Zolpidem (Ambien) Increased risk of prolonged se

depression.

Ethinyl estradiol 40% decrease in ethinyl estrad

(oral contraceptives) adjustment is needed, alterna

contraception advised.

Meperidine (Demerol) Increased risk of meperidine t

side effects, seizures and card

Nevirapine (Viramune) Efficacy of ritonavir may be de

Cisapride (Propulsid) Increased risk of torsades des 

Drug has recently been remov

because of this.

Rifabutin (Mycobutin) Ritonavir increases the risk of 

hematological toxicity by decr

Rifabutin, a potent inducer of 

metabolism of ritonavir and by 

efficacy.

Didanosine (Videx) Ritonavir causes a 13% decrea

didanosine, however no dosage 

Piroxicam (Feldene) Increased risk of piroxicam to

Saquinavir (Fortovase, Invirase) Twenty- to thirty-fold increase 

to boost levels of saquinavir, re

and reduce pill burden.

Sulfamethoxazole (Bactrim) 20% decrease in sulfamethoxa

lead to a decrease in allergic r

and hematological side effects

good fluid intake and be monit

Clarithromycin (Biaxin) 77% increase in clarithromycin 

reduction is needed for patien

function. For patients with cle

decrease dose by 50%; for pati

<30ml/min, decrease dose by 

Astemizole Increased risk of astemizole to

Chpt 27 1-17-03.p65 1560
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

Psychotropics Tricyclic antidepressants, cita

lithium, pimozide, thioridazin

ziprasidone

Table 27-6b: Clinical Monitoring for Drugs That May Prolon

Tips for Counseling Patients

• Immediately report tachycardia, lightheadedness, palpitations, vom

• Avoid use of street drugs, substances of abuse, or excessive use of 

trist before taking any prescription or over-the-counter drugs.

• Baseline and periodic screening should be done for serum potassi

sium (Mg+), and electrocardiogram (ECG).

Interactions between HAART Drugs and

Other Drugs Used by Patients with Advancing HIV Diseas

Clinicians should become familiar with these interactions of clini

antiretroviral drugs and ancillary drugs needed to manage the many co

HIV disease. Providers should avoid drug combinations likely to resu

interactions. Table 27-5 provides a detailed list of the drug interaction s

ritonavir, the most potent CYP-modifying protease inhibitor, while Tab

clinical monitoring highlights and counseling tips for patients using dr

QTC interval.

Drug Interactions Involving Amprenavir (Agenerase) and 

One capsule of amprenavir (Agenerase) contains 109 international 

The daily dose of eight capsules of amprenavir, taken twice daily which 

been established as the minimum toxic dose (MTD); this is the sma

found to be harmful when taken over a period of time. The manufacture

in the package insert that people taking amprenavir should not take a

doses of vitamin E can create problems because vitamin E is a blood t

problems with other blood thinners such as warfarin (Coumadin), vita

One woman on long-term warfarin experienced intracranial bleedin

starting amprenavir. People taking low-dose aspirin daily to prevent 

people on herbal blood thinners like ginger, garlic, feverfew, ginseng a

also be careful with the extra vitamin E in amprenavir. Symptoms of vit

ordinarily rare) include spontaneous nosebleeds, cuts that will not s

acquired easily.9

Chpt 27 1-17-03.p65 1561
562 U.S. Department of Health and Human Services • Health Resources and Services Administ

Table 27-7: HIV-related Drugs with Overlapping Toxicities*

Drugs that cause Cidofovir

bone marrow suppression Cancer chemotherapy

Dapsone

Flucytosine

Ganciclovir

Hydroxyurea

Interferon-a

Pentamidine

Pyrimethamine

Ribavirin

Sulfadiazine

Trimethoprim-sulfamethoxaz

Trimetrexate (high doses)

Zidovadine

Drugs that cause nephrotoxicity Adefovir ( now removed from 

Aminoglycosides

Amphotericin

Foscarnet

Indinavir

Pentamidine

Drugs that cause pancreatitis Cotrimoxazole**

Didanosine

Ethanol

Lamivudine (in children)

Pentamidine

Valproic acid

Drugs that cause hepatotoxicity Delavirdine

Efavirenz

Fluconazole

Isoniazid

dation reactions. Tables 27-6a and 27-6b (above) offer clinical monitor

baseline counseling tips for patients receiving such drugs.

Table 27-7 highlights HIV-related drugs with overlapping toxicities. Ta

most significant drug interactions with agents used in the treatment 

pneumonia,10 the most common opportunistic infection at the point of 

patients with HIV disease.

Chpt 27 1-17-03.p65 1562
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

* Concomitant administration of agents not recommended; if unavoidable, close clinical monitorin

** Cotrimoxazole causes a 40% increase in the plasma concentrations of lamivudine and so may in

headaches, myalgia and neutropenia. Monitor closely upon concomitant use.

Rifabutin

Rifampin

Drugs that cause rash Amprenavir

with or without pruritis Abacavir

Cotrimoxazole

Dapsone

NNRTIs

Drugs that cause diarrhea Clindamycin

Didanosine

Lopinavir/ritonavir

Nelfinavir

Ritonavir

Saquinvir

Drugs that cause ocular toxicity Cidofovir

Ethambutol

Isoniazid (optic neuritis and 

Lamivudine (uveitis in childr

Rifabutin

Drugs to avoid in patients Single-ingredient Drugs

with peripheral neuropathy Didanosine

Nitrofurantoin (oral)

Nitrofurantoin macrocrystal 

Nitrofurantoin sodium inject

Stavudine

Zalcitabine

Multiple-ingredient Drugs

Didanosine/calcium carbona

Didanosine/magnesium salt/

Nitrofurantoin/hexylresorcin

Nitrofurantoin/nitrofurantoin 

Nitrofurantoin/pyridoxine HC

Nitrofurantoin/tetracaine (or

Sulfadiazine/nitrofurantoin (

Sulfadiazine/nitrofurantoin/p

Sulfamethizole/nitrofurantoi

Chpt 27 1-17-03.p65 1563
564 U.S. Department of Health and Human Services • Health Resources and Services Administ

Fever

Dapsone Rash

Nausea/vomiting

Anemia

Methemoglobinemia

Neutropenia

Thrombocytopenia

Transaminase elevation

Pentamidine Nephrotoxicity

Hyperglycemia

Transaminase elevation

Hyperkalemia

Neutropenia

Thrombocytopenia

Pancreatitis

Potentially life-threatening

ventricular arrhythmias

Primaquine Hemolysis

(especially in G6PD-deficiency)

Fever

Rash

Methemoglobinemia

Transaminase elevation

Clindamycin Diarrhea

Nausea/vomiting

Pseudomembraneous colitis

Rash

Fever

Transaminase elevation

Trimethoprim- Skin

sulfamethoxazole Erythema multiforme

(Stevens-Johnson syndrome, rare)

Generalized skin eruptions

Epidermal necrolysis

Exfoliative dermatitis

Photosensitivity

Urticaria

Pruritus

Other

Nausea/vomiting

Transaminase elevation

Neutropenia

Thrombocytopenia

Fever

Increase

and daps

both the 

effects of 

creases 

while did

tion of da

ure of dap

Foscarne

of nephro

hypoglyc

hypocalc

that caus

pancreat

didanosin

Opiates a

worsen d

antidiarr

absorptio

Patient n

Increase

patients 

levels of 

phenytoi

Source: Adapted from multiple sources, primarily Pharmacist’s Drug Handbook 2001. Bethesda

Systems Pharmacists, 2001.

Chpt 27 1-17-03.p65 1564
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

ently one of the most potent inhibitors known; it also induces CYP1A

sponsible for the metabolism of theophylline and caffeine. Other notab

are rifampin, rifabutin, phenytoin, phenobarbital, carbamazepine, nelfi

and nevirapine. Both ritonavir and nevirapine are autoinducers which 

duce enzymes that hasten their own metabolism as well. As a result 

these agents suggest that treatment be initiated with doses that are slo

first two weeks of treatment (always consult the manufacturers’ most r

additional information, updated drug-drug interactions listings and ot

Selected Enzyme Inhibitors of the CYP System

Table 27-3 lists agents that are inhibitors of the CYP system, whi

greater detail.

As a potent inhibitor of CYP3A both in vitro and in vivo, ritonavir si

area under the curve (or, serum concentrations) of drugs that are elim

this enzyme system, especially the other protease inhibitors such 

amprenavir and lopinavir. These increases range from 77% to twenty-fo

tute the basis for the boosted PI regimens that have been shown to incr

many instances are able to improve efficacy of salvage regimens in adv

Administering reduced dosages of both PIs reduces pill burden and im

food and hydration requirements as well as the incidence of crystall

significantly reduced. By the same mechanism, enzyme inhibition caus

clarithromycin, ketoconazole and rifabutin to be greatly increased, le

icities and adverse events; concomitant administration of these age

avoided.

Other Ritonavir Drug-Drug Interactions of Clinical Signific

Since ritonavir is also an inducer of several other metabolizing en

glucoronyl transferase and possibly CYP2C9 and CYP2C19, the magni

tions is difficult to predict especially for drugs metabolized by multiple 

that have a low intrinsic clearance by CYP3A, such as methadone. Enz

ognized in the 1940s, occurs when hepatic blood flow is increased o

CYP450 enzymes is stimulated. In early animal models of enzyme indu

found to increase liver weight in a dose-dependent manner. Liver bio

taking anticonvulsants on a chronic basis showed up to a 52% increa

induction is influenced by age and liver disease. As a general rule, sub

of age tend to have decreased capacity for enzyme induction, as shown 

induction of drug metabolism in such elderly, compared to younger sub

to polycyclic aromatic hydrocarbons in cigarette smoke.3

Chpt 27 1-17-03.p65 1565
566 U.S. Department of Health and Human Services • Health Resources and Services Administ

prescription medications, 18.4% reported concurrent use of at least on

dose vitamin. In another study, 61.5% of patients who used convention

close use of other remedies to their health care provider.11

Anecdotal experience from questions asked of people with HIV at ou

suggests that the use of such remedies is reasonably high among this p

patients advance in their illness and shift into palliative care. In a surv

remedies in the U.K., 26% of patients would consult their general p

adverse reaction associated with a conventional over-the-counter medi

reaction from an herbal remedy. It seems that most patients still do 

remedies as medications.

Another reason patients may not disclose their use of herbal remedi

cause severe adverse effects, is that patients are afraid of censure.12 Hea

fore ask patients about their use of herbs in a relaxed manner that is no

shown in several studies that disapproval will ensure that patients con

future. Such patients should be involved in a partnership in which p

information is available about the herbal product, including the lack 

interactions and the need for open communication on both sides abou

edies. All such formulations, the reasons for their use, dosages, brand a

be documented in patient charts and updated from time to time.

Interactions with St. John’s Wort

This commonly used, over-the-counter antidepressant herbal prod

P450 3A enzymes and as a result has been shown in several studies 

levels of all of the protease inhibitors and, most probably also, the NNR

the market. In one study, indinavir trough levels decreased 81% when 

St. John’s wort.13 The DHHS guidelines of February 2002 recommend th

taken by patients on PI antiretroviral medications.1

An increased risk of serotonin syndrome has also been reported in pa

wort with certain SSRIs, namely trazodone (Desyrel), paroxetine (P

and nefazodone (Serzone).4,14

Reports also have been made of decreased serum concentrations of dru

phylline, cyclosporine and phenprocoumon when combined with St. Joh

time, many reports of herb-drug interactions are sketchy and lack 

studies to substantiate them; nonetheless, health care providers shoul

need always to form a partnership in the use of these remedies and if p

sary herbal and unproven remedies that can lead to undesirable drug-

Chpt 27 1-17-03.p65 1566
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

benzodiazepines, smokers generally required larger doses of benzodiaz

tive and/or anxiolytic effect.15

Rifampin is one of the most powerful inducers of the cytochrome P450 

impair the efficacy of some benzodiazepines based on this activity. Wh

rifampin to ten healthy volunteers in a double-blind cross-over study, th

decreased 96% while the hypnotic effects were nonexistent in all ten 

with triazolam and rifampin gave similar results, with markedly decre

in the presence of rifampin based on standardized psychomotor tests.

It is also well known that rifampin, like benzodiazepines, increases t

many opioids and may induce withdrawal symptoms in patients.16

Drug Interactions of Clinical Significance Involving Warfar

The anticoagulant effects of warfarin, as measured by increases in 

been reported to be increased two-fold by the presence of fluconazole 

by ketoconazole (Nizoral). Clearances of both isomers of warfarin were 

fluconazole as low as 100mg/day for seven days.17

Numerous other reports tend to substantiate the effects of erythro

hypoprothrombinemic effects of warfarin when given in combinatio

prothrombin time were reported after seven days but there have been 

complications.The clinical relevance of this interaction depends on a n

age of patient, concurrent drug therapy, rate of clearance of warfarin an

metabolism to other non-inhibited pathways. This interaction has 

azithromycin; as with erythromycin, caution is advised with clarithromyc

Omeprazole, another drug commonly used by patients for palliative c

inhibit the metabolism for warfarin, an interaction that is most likely m

interaction is usually observed after several days of taking omeprazole

not necessarily abate upon discontinuation of the agent. Lansoprazol

to have this interaction and offers a comparable alternative treatment

As a general rule, patients with clotting disorders, those awaiting surgic

on anticoagulant therapy should be cautioned against the use of herb

ginseng (Pannax species), Devil’s claw (Harpagophytum procumb

mittiorhiza), ginkgo (Ginkgo biloba), Don quai (Angelica sinensi).11 

continuing with these medications along with their herbal remedies, th

be more closely monitored. Since most of these herbs interfere with 

the coagulation cascade, they will neither affect prothrombin time, part

nor the international normalized ration (INR). It is also worthy to not

substances contain anticoagulant substances, patients on warfarin sh

measure, have their INRs measured within seven days of starting any 

Chpt 27 1-17-03.p65 1567
568 U.S. Department of Health and Human Services • Health Resources and Services Administ

(destruction of skeletal muscle, leading to renal failure) and myopat

drug interactions occur with the statins when these agents, all of wh

CYP450 enzyme system and so are amenable to the action of these enz

other drugs that cause muscle damage or drugs that interact to give 

plasma levels resulting from inhibition of statin metabolism.

Numerous interactions between statins metabolized by CYP3A and s

including the protease inhibitors, the azole antifungals, grapefruit juic

pecially lovastatin) have been reported.4

 DHHS guidelines specifically 

nations of protease inhibitors and simvastatin (Zocor) and lovastatin (M

(Lescol) and atorvastatin (Lipitor) as alternatives that must be used 

such as gemfibrizol may cause myopathy when used alone and also in c

the statins, with the exception of fluvastatin (Lescol). An increased in

been reported when niacin is combined with lovastatin but not with f

simvastatin.19

Despite the increased risk of adverse events, providers are sometime

statin therapy in order to ward off serious cardiovascular sequalae. In 

tients should be counseled to report immediately any signs or sympto

muscle pain, calf tenderness or muscle weakness.

Significant Induction Interactions: Estrogens and Corticos

Estrogens and corticosteroids are substrates to the cytochrome P45

remain susceptible to the action of these enzymes and can be changed 

or by substances that act as inducers or inhibitors on CYP450 enzymes. 

as nelfinavir or ritonavir, which can act both as inducers and inhibito

system, have been shown to increase the degradation of ethinyl estradi

oral contraceptive pills.20 Women with HIV taking these PIs should rece

tive contraceptive methods in order to ensure full protection.

As a result of the recent decreases in the estrogen and progestin conc

ceptives, reports of unintended pregnancies and episodes of breakthro

on the rise.16 Reports of clinically significant drug interactions second

have implicated phenobarbital, phenytoin, carbamazepine, ethosu

rifampin.21,22,23,24 Such reports have not been made for gabapentin, lam

valproate. When such interactions are suspected, a higher dose oral c

50 mg ethinyl estradiol, medroxyprogesterone or a non-hormonal alter

ception is usually recommended.

Corticosteroids, which often remain the mainstay of management of d

liative care of advanced HIV infection, have their clearances increase

the estrogens by the same agents, when administered concomitantly

roids for chronic diseases should be monitored for exacerbation of sym

and the necessary dosage adjustments made.24

Chpt 27 1-17-03.p65 1568
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

standing substance use will suffer from comorbid conditions that will 

response to the therapies offered to them at all stages of their HIV dise

that the abuse of psychoactive substances not only causes a significant 

often is associated with other medical problems and comorbid conditi

9.25 For example, excessive alcohol intake places a patient at risk for va

conditions including peripheral neuropathy and pancreatitis, cirrhosi

chiatric disorders. Any of these events and conditions can exacerbate t

the severity of drug-drug and drug-disease interactions, especially as H

patients begin to receive palliative care.

Table 27-9: Comorbid Conditions Associated with Substanc

• Poor nutrition/wasting

• Liver disease

• Endocarditis

• Tuberculosis

• Cutaneous abscesses

• Pneumonia

• Slowed mentation and cognitive dysfunction

• HIV/STDs

• Cellulitis and septic emboli

• Hepatitis (A,B, C, D and G)

Source: Adapted from Anderson JR, ed. A Guide to the Clinical Care of Women with HIV. Rockvi

and Human Services, Health Resources and Services Administration (HRSA), 2001.

Most Commonly Used Illicit Substances and

Their Interaction with Antiretroviral Agents

Recent reports in the literature have brought more attention to the 

tions, including deaths, that occurred when protease inhibitors were co

such as ecstasy (MDMA) and GHB (gamma hydroxy butyrate).26

Although PIs have dramatically improved the prognosis for many peop

associated with numerous adverse effects including increases in seru

lipodystrophy, hepatitis, nephrolithiasis and a large variety of GI side ef

drug interactions previously discussed, protease inhibitors can cause s

and interactions when administered in combination with other substanc

whose metabolism may be altered as a result of the inhibitory effect

chrome P450 enzyme system.

Chpt 27 1-17-03.p65 1569
570 U.S. Department of Health and Human Services • Health Resources and Services Administ

Cocaine has been reported to increase the speed at which HIV replicat

the protease inhibitors with marijuana increases levels of tetrahydroca

Because combination of methamphetamine with ritonavir (Norvir) c

potency of ritonavir, two-fold or three-fold, the likelihood of overdose w

increased. Concomitant use of ketamine in the presence of the proteas

titis. Ritonavir decreases plasma levels of heroin by 50%.

The potency of methadone is decreased in the presence of ritonavir, 

nevirapine (Viramune), while methadone increases the potency of rito

was demonstrated to reduce plasma methadone levels and to precipit

patients who were maintained on methadone for narcotics addiction.28 

reported decreases in the amount of stavudine (Zerit) and didanosin

the digestive tract into the bloodstream in the presence of methado

highlights of the side effects that may be exacerbated by the use of ecs

street drug recently associated with fatal drug interactions when adm

with ritonavir.29

Table 27-10: Side Effects of Ecstasy (MDMA) That May Be 

When Used with Conventional Drugs with Sim

• Bradycardia

• Decreased libido

• Drowsiness

• Dysphoria

• Euphoria

• Faintness

• Headache

• Insomnia

• Nausea and vomiting

• Pruritus

• Rash

• Respiratory depression

• Physical and psychological dependence

• Urinary retention

• Visual disturbances

Sources: Adapted from multiple sources, mainly Pham JV, Puzantian T. Ecstasy: Dangers and controv

5, 2001.

Chpt 27 1-17-03.p65 1570
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

for over-sedation and initial dosages should be decreased by 50%. Patie

are at risk of toxicity if they concomitantly take these agents, and shoul

ately.30 Table 27-11 lists metabolic pathways of frequently abused drug

co-administration with the protease inhibitors.26

Table 27-11: Metabolic Pathways of Frequently Abused Dru

Affected by HIV-1 Protease Inhibitors

Drug Metabolic Pathwa

(P450 Isoenzyme)

Opiates

Methadone, alfentanyl, fentanyl Cytochrome P450 (CYP3A

Meperidine Cytochrome P450 (CYP3A

Codeine, hydrocodone, oxycodone Cytochrome P450 (CYP2D

Heroin, morphine, hydromorphone Glucoronidation?

Propoxyphene (Darvon) Cytochrome P450 (CYP2D

Benzodiazepines

Diazepam (Valium) Cytochrome P450 (CYP3A

Alprazolam, clorazepate, estazolam,

flurazepam, midazolam, triazolam Cytochrome P450 (CYP3A

Other drugs prone to abuse

Marijuana, dronabinol, zolpidem Cytochrome P450 (CYP3A

Sildenafil (Viagra)* Cytochrome P450 (CYP3A

Cocaine** Hydrolysis by plasma cho

* AUC of slidenafil (Viagra) is increased twofold to elevenfold in the presence of all protease inhibito

in a 48-hour period.

** Cocaine increases the speed at which HIV-1 virus replicates and so worsens overall prognosis by abo

therapy. Metabolism of cocaine should not be affected by protease inhibitors.

Source: Adapted from Harrington RD, Woodward JA, Hooton TM, Horn JR. Life-threatening int

inhibitors and the illicit drugs MDMA and y-hydroxybutarate. Arch Intern Med 139:2221-4, 1999.

Chpt 27 1-17-03.p65 1571
572 U.S. Department of Health and Human Services • Health Resources and Services Administ

pg 

tients before prescribing. With the increasing complexity of HIV thera

interactions for patients in both active and palliative care is exceed

providers must be committed to constantly monitoring their patients a

minimize and/or circumvent harmful drug-drug interactions.

With more than 30 new medications approved by the FDA each year f

armamentarium, the recognition and management of drug interaction

challenge. While some pharmacokinetic and pharmacodynamic inter

and clinically useful, many have the potential to be detrimental or to e

ing toxicities and/or therapeutic failures. Providers must, therefore, b

fundamental issues involved in drug-drug interactions, especially with th

usually the drugs in the patient’s regimen that are enzyme inducers or 

therapeutic index, or have specific absorption requirements—as well a

that require close patient monitoring and avoidance of certain groups 

It is equally important that patients become active partners in their 

understand that many potential drug-drug interactions can be circumv

ers are made aware of all the medications and herbal remedies a pa

may want to photocopy Table 27-14, Advice to Patients: Red Flag Me

with patients receiving active and/or palliative care therapies for HIV 

Chpt 27 1-17-03.p65 1572
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

Ritonavir Indinavir 

(Norvir) (Crixivan) 

CARDIOVASCLUAR

Beta Blockers

Antiarrhythmics

Ca ++ Channel

Blockers

Antihyperlipidemics

GASTROINTESTINAL

Cisapride

RESPIRATORY

Astemizole and

terfenadine

Theophylline

↑ plasma conc. of

metoprolol &

timolol

↑ plasma conc. of

amiodarone &

quinidine

Serious arrhythmias

with propafenone

↑ plasma conc. of

ecainide, mexilente,

flecainide, &

systemic lidocaine

↑ plasma conc. of

nifedipine

(Significant ↑ over

all Ca ++ Channel

Blockers)

Significant ↑ in

levels of simvastatin

& lovastatin

↑ in plasma conc.

∴results in serious

or life-threatening

arrhythmias

(No longer on

market)

↑ in plasma conc.

∴results in serious

or life-threatening

arrhythmias

↓ in plasma conc. of

theophylline

↑ plasma conc. of

amiodarone &

quinidine

Significant ↑ in

levels of simvastat

& lovastatin

↑ in plasma conc.

∴results in seriou

or life-threatening

arrhythmias

(No longer on

market)

↑ in plasma conc.

∴results in seriou

or life-threatening

arrhythmias

Chpt 27 1-17-03.p65 1573
574 U.S. Department of Health and Human Services • Health Resources and Services Administ

CENTRAL NERVOUS SYSTEM

Antipsychotics

Antidepressants

Benzodiazepines

↑ plasma conc. of

pimozide

↑ plasma conc. of

buproprion,

nefazodone, SSRIs,

& tricyclics

↑ plasma conc. of

diazepam &

flurazepam

↑↓ metabolism of

alprazolam

Extreme sedation &

respiratory

depression with

clorazepate,

estazolam &

zolpidem

Prolong sedation of

midazolam &

triazolam due to

narrow therapeutic

index

↓ plasma conc. of

these drugs and

monitor blood levels

to assure therapeutic goals

↑ plasma conc.

∴results in serious

toxicities such as

respiratory

depression, or

tachycardia

↓ plasma conc. of

these drugs

Prolong sedation o

midazolam &

triazolam due to

narrow therapeuti

index

ANTIEPILEPTIC AND NEUROLEPTIC AGENTS

Carbamazepine,

phenytoin, &

phenobarbital*

Clozapine

Divalproex and

lamotrigine

(Norvir) (Crixivan) 

Chpt 27 1-17-03.p65 1574
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

Clonazepam, perphenazine,

risperidone, and

thioridazine

↑ plasma conc. of

these drugs

↑ in plasma conc.

∴results in seriou

or life-threatening

arrhythmias

↑ plasma conc. du

to a ↓ in its

metabolism

Significantly ↑ the

plasma conc. of

rifabutin

↓ clearance of

rifabutin

Rifampin ↓ plasm

conc. of PIs

↑ plasma conc. of

PIs

*Inducers such as phenytoin, phenobarbital, and carbamazepines can

cause a reduction in plasma conc. of PIs

↑ plasma conc. of

Piroxicam

↑ plasma conc. of

meperidine,

propoxyphene,

fentanyl, &

tramadol ∴↓ dose

↑ in plasma conc.

∴results in serious

or life-threatening

arrhythmias

↑ plasma conc. due

to a ↓ in its

metabolism

↓ plasma conc. due

to displacement

from PPB and ↑ in

its metabolism

Rifampin ↓ plasma

conc. of PIs

Significantly ↑ the

plasma conc. of

rifabutin

Rifampin ↓ plasma

conc. of PIs

↑ plasma conc. of

PIs

ANALGESICS

NSAIDS

Opiates

Ergotamines

Methadone

OTHER MEDICATIONS

Rifampin and rifabutin

Ketoconazole and

itraconazole

(Norvir) (Crixivan) 

Chpt 27 1-17-03.p65 1575
576 U.S. Department of Health and Human Services • Health Resources and Services Administ

Antabuse Causes an intense

flushing &

abdominal pain due

to alcohol in ART

Causes an antabuselike effect with

metronidazole when

given with alcohol

↓ plasma conc. of

ethinyl estradiol

Significantly ↑

plasma conc. of

drug due to a ↓ in

its clearance ∴

results in ↑ effect

Significantly ↑

plasma conc. of

drug due to a ↓ in

its clearance ∴

results in ↑ effects

Oral Contraceptives ↓ plasma conc. of

ethinyl estradiol

Sildenafil (Viagra)

HERBAL REMEDIES

Causes severe

gastrointestinal

toxicity

↓ plasma conc. of

PIs by more than

50%

St. John’s Wort*

*This herbal product with PIs will increase the risk of viral resistance

Garlic

ILLEGAL DRUGS

Ecstasy Slows down the

liver enzymes that

break down the

drug ∴ becomes 5-

10 times stronger

Most dangerous

interaction

Avoid in patients with family or persona

or anxiety disorders because the drug da

neurons.

Marijuana Protease inhibitors increase the levels o

ingredient) ∴ smaller doses may have a 

(Norvir) (Crixivan) 

Chpt 27 1-17-03.p65 1576
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

Heroin ↓ plasma conc. of by

50% ∴ ↓ risk of

overdose

Causes “chemical

hepatitis”

↑ levels in the blood

by 20%-30%

Strengthens or

weakens the effects

of ritalin

No known

interactions

No known

interactions

Ketamine (Special K)

LSD

Amphetamines

Cocaine Doubles the speed at which the virus rep

progression of the disease

DISEASE STATES

and Medications PROTEASE INHIBIT

Agenerase 

(Amprenavir) 

CARDIOVASCULAR

Antiarrhythmias

Ca++ Channel

Blockers

Anithyperlipidemics

↑ plasma conc. of amiodarone

& quinidine

↑ plasma conc. of lidocaine

↑ plasma conc. of nifedipine

(Significant ↑ over all

Ca++ Channel Blockers)

Significant ↑ in levels of

simvastatin & lovastatin

↑ in plasma conc. ∴ results in

serious or life-threatening

arrhythmias

(No longer on market)

↑ in plasma conc. ∴ results in

serious or life-threatening

arrhythmias

Cisapride

GASTROINTESTINAL

Astemizole and

terfenadine

RESPIRATORY

↑ in pla

serious 

arrhyth

(No lon

↑ in pla

serious 

arrhyth

(Norvir) (Crixivan) 

Disease States

and Medications Protease Inhibi

Chpt 27 1-17-03.p65 1577
578 U.S. Department of Health and Human Services • Health Resources and Services Administ

(Amprenavir) 

CENTRAL NERVOUS SYSTEM

↑ plasma conc. of tricyclics

↑ plasma conc. of alprazolam,

diazepam, & flurazepam

Prolong sedation of midazolam

& triazolam due to narrow

therapeutic index

Antidepressants

Benzodiazepines

↑ in plasma conc. ∴ results in

serious or life-threatening

arrhythmias

↓ in its metabolism ∴↑ in

plasma conc.

Rifampin ↓ plasma conc. of

PIs

Significantly ↑ the plasma

conc. of rifabutin

↓ clearance of rifabutin

↑ plasma conc. of PIs

Significantly ↑ plasma conc.

of drug due to a ↓ in its

clearance ∴ results in ↑

effects

*Inducers such as phenytoin, phenobarbital, and carbamazepines can 

plasma conc. of PIs

ANALGESICS

Ergotamines

Methadone

OTHER MEDICATIONS

Rifampin and rifabutin

↑ in pla

serious 

arrhyth

↓ in its 

plasma 

Rifabut

plasma 

70%-80%

↑ plasm

Slidena

eleven-f

starting 

Prolong 

& triazo

therape

Ketoconazole and

itraconazole

Sildenafil (Viagra)

ILLEGAL DRUGS

Ecstasy Avoid in patients with family or persona

or anxiety disorders because the drug da

neurons.

Chpt 27 1-17-03.p65 1578
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

(Amprenavir) 

PIs increase the levels of THC (active in

∴ smaller doses may have a greater effe

No known interactions No know

Doubles the speed at which the virus rep

∴ increases the progression of the disea

Marijuana

LSD

Cocaine

Disease States Non-nucleoside R

and Medications Transcriptase Inh

Delavirdine Efavirenz 

(Rescriptor) (Sustiva) 

CARDIOVASCULAR

Antiarrhythmias ↑ plasma conc. of

amiodarone &

quinidine

↑ plasma conc. of

nifedipine

Significant ↑ in

levels of simvastatin

& lovastatin

Ca++ Channel

Blockers

Anithyperlipidemics

Cisapride

GASTROINTESTINAL

Antacids, Proton Pump

Inhibitors and H2

Antagonists

Astemizole and

terfenadine

RESPIRATORY

↑ in plasma conc. ∴

results in serious or

life-threatening

arrhythmias

(No longer on

market)

Cause an alteration

in the pH of the

stomach ∴ may

delay or reduce the

absorption of ART

↑ in plasma conc.

∴ results in serious

or life-threatening

arrhythmias

Chpt 27 1-17-03.p65 1579
580 U.S. Department of Health and Human Services • Health Resources and Services Administ

(Rescriptor) (Sustiva) 

CENTRAL NERVOUS SYSTEM

Prolong sedation of

midazolam &

triazolam due to

narrow therapeutic

index

Prolong sedation o

midazolam &

triazolam due to

narrow therapeuti

index

Antiepileptic and

Neuroleptic Agents

↓ plasma conc. of

phenytoin &

phenobarbital ∴

results in ineffectiveness of the drugs

↑ in plasma conc.

∴results in seriou

or life-threatening

arrhythmias

↑ in plasma conc.

∴results in serious

or life-threatening

arrhythmias

Can cause

peripheral ischemia

ANALGESICS

Ergotamines

OTHER MEDICATIONS

Clarithromycin

Methadone Causes a methadone withdrawal

effect ∴↑ amt. of

drug needed to ge

the desired effect

↓ plasma conc. of

the drug

Rifampin and rifabutin

↑ plasma conc. of

ethinyl estradiol b

37%

Rifampin ↓ plasma

conc. of ART

Significantly ↑ the

plasma conc. of

Rifabutin

Oral Contraceptives

Benzodiazepines

Chpt 27 1-17-03.p65 1580
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

(Rescriptor) (Sustiva) 

Significantly ↑

plasma conc. of

drug due to a ↓ in

its clearance ∴

results in ↑ effect

Significantly ↑

plasma conc. of

drug due to a ↓ in

its clearance ∴

results in ↑ effects

Sildenafil (Viagra)

↑ risk for toxicity

with etoposide &

paclitaxel

Less dangerous

effects

Chemotherapy Agents

ILLEGAL DRUGS

Ecstasy

Cocaine

Most dangerous

effects due to the

break down of the

drug

Avoid in patients with family or personal 

or anxiety disorders because the drug da

neurons.

Doubles the speed at which the virus rep

∴ increases the progression of the disea

No known

interactions

LSD No known

interactions

DISEASE STATES NUCLEOSIDE REVE

and Medications TRANSCRIPTASE INHI

Zidovudine Didanosine 

(Retrovir) (Videx) 

↑ the absorption o

ART

GASTROINTESTINAL

Antacids, Proton Pump

Inhibitors and H2

Antagonists

CENTRAL NERVOUS SYSTEM

Antipsychotics 

Disease States Nucleoside Rev

and Medications Transcriptase Inh

Chpt 27 1-17-03.p65 1581
582 U.S. Department of Health and Human Services • Health Resources and Services Administ

No known

interactions

↑ risk of

pancreatitis

(Retrovir) (Videx) 

Avoid in patients with family or persona

or anxiety disorders because the drug da

neurons.

ILLEGAL DRUGS

Ecstasy

Alcohol

Cocaine

LSD No known

interactions

Avoid in patients with family or persona

or anxiety disorders because the drug da

neurons.

Interactions 

Cardiovascular Simvastatin, lovastatin, Pravast

cerivastatin, atorvastatin

Gastrointestinal Cimetidine Famoti

Respiratory Astemizole, terfenadine, Loratid

cetirizine, nasal steriods

CNS Alprazolam, diazepam, Temaze

flurazepam, midazolam,

triazolam

Analgesics Meperidine, propoxyphene, Hydrom

fentanyl, tramadol

Antimycobacterial Clarithromycin Azithro

Oral Contraceptive Ethinyl estradiol Ethinyl 

Alternative Agents

Chpt 27 1-17-03.p65 1582
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

(Sporonox)

Macrolides Erythromycin, clarithromycin (Biaxin)

HIV medications Ritonavir (Norvir), ritonavir + lopinavir 

(Crixivan), nelfinavir (Viracept), saquin

Invirase), amprenavir (Agenerase), del

efavirenz (Sustiva)

Others Cimetidine (Tagamet), amiodarone (Co

CYP450 Enzyme Inducers

Anticonvulsants Phenobarbital, phenytoin (Dilantin), ca

Rifamycins Rifabutin (Mycobutin), rifampin (Rifad

HIV medications Nelfinavir (Viracept), nevirapine (Viram

(Norvir), efavirenz (Sustiva)

Drugs with Narrow Therapeutic Ind

Antiarrhythmics Fleicanide (Tambocor), encainide (Enk

Ergot alkaloids Ergotamine tartrate (Cafergot, others)

Others Digoxin (Lanoxin), oral contraceptives

(Coumadin)

Drugs with Specific Absorption Require

Azole antifungals Itraconazole (Sporonox), ketoconazole 

Fluoroquinolones Levofloxacin (Levaquin), ciprofloxacin 

(Penetrex), moxifloxacin (Avelox), norf

ofloxacin (Floxin), trovafloxacin (Trova

HIV medications Didanosine (Videx), ritonavir (Norvir), 

saquinavir (Fortovase, Invirase)

Other medications MAO inhibitors, cyclosporine (Neoral, S

alendronate (Fosamax)

Chpt 27 1-17-03.p65 1583
584 U.S. Department of Health and Human Services • Health Resources and Services Administ

Always carry a standard list of these as you go for your cli

Remember to mention to your providers any new or unusual 

ments, over-the-counter remedies, or vitamins you may be ta

necessary, take a description of such products along with yo

visits or on refill visits to your pharmacy.

• Fill all of your prescriptions at the same pharmacy, as much 

This way, your pharmacist has access to your entire medic

or she will be better able to resolve any problems that may o

medications are added to your regimen or if you change your 

• Share ALL information about your health care regimen with 

and pharmacist.

Be frank with your health care providers. Keep them info

actions as stopping a drug regimen on your own, taking med

friend, or using street drugs, even if you feel they may not ap

drug interactions which can arise that can harm your therap

circumvented by your provider’s knowledge and intervention

• Whenever you anticipate changing your health care routine, 

with your provider, especially if you are taking one of the red 

Ask your pharmacist if any of your medications belong to 

so, always consult your provider or pharmacist before makin

your usual health routine, including your intake of vitamins, 

herbal remedies, and antacids. Though all of the red flag me

highly efficacious, they are prone to significant drug-drug in

must be administered under close monitoring by an experie

Consider wearing a “Medic-Alert” bracelet especially when t

as abacavir (Ziagen), in case of an emergency.

Chpt 27 1-17-03.p65 1584
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

1. Guidelines for the Use of Antiretroviral Agents in HIV-Infected Adults and Adol

Department of Health and Human Services (DHHS) and the Henry J. Kaiser Fa

2002. Available on the web at www.hivatis.org

2. CDC. MMWR 48[RR-10]:47, 1999.

3. Gerber JG. Drug interaction issues in multidrug therapy of HIV infection. The 

(electronic journal) 4, 1999.

4. Graham AS. Drug interactions: moderate to severe interactions with widely pr

The RX Consultant 10:1-8, 2001.

5. Morse GD, Shelton MJ, Hewitt RG, et al. Ritonavir pharmacokinetics (PK) dur

delavirdine (DLV). Abstract 343. Presented at 5th Conference on Retroviruses 

Chicago, IL, Feb. 1-5, 1998.

6. Cohen PT, Sande MA, Volberding PA. The AIDS Knowledge Base: A Textbook of 

University of California, San Francisco and the San Francisco General Hosp

Lippincott, Williams and Wilkins, 1999.

7. Hiemke C, Hartter S. Pharmacokinetics of selective serotonin reuptake inhibi

85:11-28, 2000.

8. Sewell DD, Jeste DV, McAdams LA, et al. Neuroleptic treatment of HIV-associa

Neuropsychopharmacology 10:223-9, 1994.

9. Heck, 2000.

10. Pharmacist’s Drug Handbook 2001. Bethesda, MD: American Society of Healt

11. Pugh-Berman A. Review: Herb-drug interactions. Lancet 355:134-8, 2000.

12. Doucet J, Chassagne P, Trivalle C, et al. Drug-drug interactions related to hosp

adults: a prospective study of 1000 patients. J Am Geriatr Soc 44: 944-8, 1996.

13. Piscitelli SC, Gallicano KD. Drug therapy: Interactions among drugs for HIV an

N Engl J Med 344:984-96, 2001.

14. Demott K. St. John’s wort tied to serotonin syndrome. Clin Psychiatry News 1

15. Schein et al.

16. Michalets EL. Update: Clinically significant cytochrome P450 drug interaction

18:84-112, 1998.

17. Wells PS, Holbrook AM, Crowther NR, et al.. Interactions of warfarin with drugs 

121: 676-83, 1994.

18. Anderson T. Omeprazole drug interaction studies. Clin Pharmacokinet 21:195

19. Corsini A, Bellosta S, Baetta R, et al. New insights into the pharmacodynamic 

properties of statins. Pharmacol Ther 84:413-28, 1999.

20. Kerr B, Yuen G, et al. Overview of in vitro and in vivo drug interaction studies 

HIV-1 protease inhibitor. In Proceedings of the 4th Conference on Retroviruses 

(Abstract). Washington, DC, Jan. 24, 1997.

21. Venkatesan K. Pharmacokinetic drug interactions with rifampicin. Clin Pharm

22. Bolt HM. Interactions between clinically used drugs and oral contraceptives. E

102(suppl):35-8, 1994.

Chpt 27 1-17-03.p65 1585
586 U.S. Department of Health and Human Services • Health Resources and Services Administ

inhibitors and the illicit drugs MDMA and yhydroxybutarate. Arch Intern Med 

27. Flexner C. HIV protease inhibitors. N Engl J Med 338:1281-92, 1998.

28. Altice F, Cooney E, Friedland G. Nevirapine-induced methadone withdrawal: i

treatment of opiate dependent HIV-infected patients (Abstract). In Proceedin

Retroviruses and Opportunistic Infections. Chicago, IL, Feb. 2, 1999.

29. CDC. Multistate outbreak of poisonings associated with illicit use of gamma hy

New York and Texas, 1995-1996. MMWR 46:281-3, 1997.

30. Maurer PM, Bartkowski RR. Drug interactions of clinical significance with opi

Drug Saf 8:30-48, 1993.

Chpt 27 1-17-03.p65 1586
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

abdominal pain, 89

abscesses, oral, 169

absorption, of medications, 551

abuse, of patients, 416

acceptance, 334–335

accommodation, 338–339

addiction, 259

adherence

homeless persons, 318

influences, 483–484

substance users, 240

adjustment, 338

adjustment disorder, 226

adolescents. see also children

special concerns, 316

advance care, 24–25

advance directives

African Americans, 309

communication about, 433

described, 376

difficulty addressing, 247

discussion about, 455

Hispanic attitudes, 304

homeless persons, 318–319

prisoners, 324

advanced care, 54

advocacy, 531

affective disorders, 226–227

affective impairment, 213

African Americans, 307–311

Africans, 321

agents. see durable power of attorney; proxies

agitation, 109

agoraphobia, 224, 234

AIDS

epidemiology, 5–7

illness trajectory, 7, 8

provider’s role, 31–32

statistics, 5, 6

therapy dilemmas, 25

treatment models, 11

airway compression, 146

alcohol dependence/ withdrawal, 229

alternative therapies, information resources, 534

anal pain, 90

angioedema, 199

angular chelitis

described, 170

drug treatment, 168

image, 173

anorexia, 278

anticipation, 330–331

anxiety

in children, 278

differential diagnosis, 232–233

manifestations, 232–233

misperceptions, 224

anxiety disorders

common medications, 229

manifestations, 232–235

treatment, 235–236

aphthous stomatitis

described, 170–17

drug treatment, 16

image, 174

appetite, 278, 470

arthritis, 94

arthropathies, 94

assault history, 224

assets

distribution plannin

durable power of a

Medicaid limitation

SSI tests, 367

asteatotic eczema, 183

atopic dermatitis, 184, 2

atrophic candidiasis, 17

autonomy

and African Americ

of children, 280–28

confidentiality case 

ethical base, 349

Hispanics, 303–30

prisoners, 324

sedation case stud

spiritual care, 294

B

bank accounts, 379–38

bankruptcy, 382

barriers to care, in deve

behavioral disorders, 23

behavioral impairment, 

beneficiaries, 380

bereavement. see also 

of caregivers, 418

defined, 329

provider role, 31

bilevel positive airway p

biliary tract, 89

bipolar mood disorder, 

blacks. see African Ame

Blessed Orientation-Me

(BOMC), 7

blisters, 199

bone marrow suppress

bowel movements, 469

Braden Risk Assessme

breakthrough pain, 106

breathing, as relaxation 

breathlessness, vocabu

Brief Pain Inventory, 69

bronchospasm, 146, 15

burial, 321, 377–378

burnout

contributing factors

described, 415–41

prevention, formal 

prevention, informa

Index.p65 1587
588 U.S. Department of Health and Human Services • Health Resources and Services Administ

pg, 

pseudomembranous candidiasis, 173

of skin, in bed-ridden patients, 199–200

of skin, presentation, 193

treatment options, 169–170

canker sores. see aphthous stomatitis

caregivers

burdens, 411–413

burnout, described, 415–416

care team role, 447–451

comforting strategies, 468–469

common fears, 460

formal, burnout management, 422–423

informal, burnout management, 416–422

informal, overview, 410–411

responsibilities, 409

rewards, 414

support, information resources, 520–521

supporting information, 466

caries, 168, 169, 173

case managers, 451

cellulitis, 188, 189

central nervous system, 208, 223

cerebral spinal fluid (CSF), 216, 220

cerebrovascular events, 90

chaplains, 293–294, 451

chest pain, 90

children

affective disorders, 226–227

analgesics, 277

anorexia, 278

anxiety, 278

anxiety disorders, 236

care decisions, 278–285

cognitive impairment treatment, 222

constipation, 277

depression, 278

development, and grief, 340–341

development continuum, 268–271

diarrhea, 277

dosage adjustment, 269, 269, 276

dyspnea, 278

as family members, 268

fatigue, 278

grief in, 339

HIV+ concerns, 267

home care planning, 459

interaction guide, 271

nausea and vomiting, 277

neuropsychiatric disorders, 219

pain, 88

pain assessment instruments, 72, 74

pain management, 276

pediatric education resources, 397

pediatric information resources, 522–524

permanency planning, 247, 285, 382–385

prognostication, 278–279

skin care, 278

special needs, 472–473

supportive care, 285

symptom assessment, 57, 273–276

symptom assessment scale, 66–67

colitis, 158

encephalitis, CNS 

esophageal infecti

COBRA insurance, 373

cognitive development, 

cognitive impairment

Blessed Orientatio

Test (B

HIV dementia, 212

Mini Mental State 

subclinical present

symptom assessm

comfort, 455, 468–469

communication

advanced AIDS pa

with African Ameri

with bereaved, 342

about caregivers, 4

with children, 283–

children’s care, 28

cultural barriers, 3

cultural concerns, 

current state, 433–

documentation, 46

in families, 286

about herbal reme

homeless persons

importance, 431–4

last wishes, 465

about palliative ca

patient’s beliefs, 29

shared decisionma

with significant oth

about spirituality, 2

about surrogates, 

with surrogates, 35

team-oriented, 434

through proxies, 37

community education, 3

Community Health App

402, 402–4

compassionate release

compliance. see adhere

complications contingen

condyloma accuminata

confidentiality, 324, 358

confusion, vocabulary, 4

congestive heart failure

conservators. see guard

consistency of care, 42

constipation

in children, 277

opioids, 109

treatment options, 

contact dermatitis, 200

control, 231, 273

coping strategies, 418–

cough, 150, 152–153

counseling, 294–296, 4

creditors, 382

crime, 474

cryptococcosis, 193, 19

Index.p65 1588
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

overview, 301–302

palliative care discussions, 440–441, 441

rural poor, 473–474

symptom assessment difficulties, 57

custody, of children, 384–385. see also guardians

cytochrome P450 enzyme system

CYP3A4, 555

inducers, 241, 557, 565

inhibitors, 241, 557, 565

overview, 555

psychotropics interactions, 556–559

ritonavir interactions, 560

substrates, 241, 558, 559

cytokines

pruritis, 180

D

death

approaching signs, 469–471

discomfort with, 442

imminence, 498–499

planning for, 464–465

preparing for, 496, 496–498, 497

prognostication, 493–495, 494

provider perspective, 27–28

signs of, 499

death rattle, 143–145

debts, 382

decisionmaking

for children, 280–283, 282

legal options, 374–378

shared process, 352–353

dehydration

diarrhea patients, 159

expectoration, 143

in terminal patients, 137–138

deliberation principle

case study, 358–359

discussion, 352–353

limitations, 353–354

delirium

causes, 222

vs. depression, 226

at end of life, 499, 500

misperceptions, 224

opioids, 109

symptom assessment difficulties, 56

dementia

causes, 213–214

clinical findings, 216–217

CNS manifestations, 217

criteria, 214

vs. depression, 226

differential diagnosis, 213

late stage treatment, 222

presentation, 211–213, 212

vs. progressive multifocal leukoencephalopathy (PML), 219

risk factor, 214

demodex infestation, 186–188

presentation, 193

treatment, 194

developing countries

barriers to care, 39

care models, 401–

drug availability, 39

education efforts, 3

policy, 392–394

recommendations 

diagnosis

disclosure to child

vs. symptoms, 39–

diarrhea

in children, 277

drug causes, 563

medication absorp

treatment options, 

dieticians, 450

dignity, 349–350, 469

disability insurance, 366

discharge planning, 457

disenfranchisement, 33

disseminated mycobact

(MAC), 129

distraction, 116

distress, 45, 56

diversion, 261

domestic violence, 224

double effect rule

case study, 359–3

discussion, 353–3

explained, 139

drug eruptions, 197–19

drug resistance, 480–4

drug toxicity, 16

dry mouth

caries, 169

at end of life, 500

in terminal patients

durable power of attorn

dying. see death

dysphagia, 162

dyspnea

causes, 146–147

in children, 278

treatment options, 

E

ecthyma, 188

eczema craquele, 183, 

eczemas, 183–185

Edmonton Symptom As

64–65, 77–

education, of caregivers

elderly, special concern

emotional expression, 3

emotional health, 412, 4

emotions

emotional skills, 270

employment, 369–370, 

Index.p65 1589
590 U.S. Department of Health and Human Services • Health Resources and Services Administ

ethics, 350

Hispanic preferences, 303–304

patient control, 142

prognostic markers, 29–30

sentinel events, 479–486, 480

endotracheal tubes, 140

energy surges, 471

Enhancing Care Initiative, 401–402

enteropathy, 551

enzyme induction, 565

erysipelas, 188

erythematous candidiasis, 170

erythrasma, 199–200

erythroderma, 199

esophagus

disorders management, 162–164

esophagitis, 89

pain syndromes, 89

espiritismo, 303, 306

estate planning, 378–382

ethics

case studies, 358–364

ideals, 349–350

principles, 351–357

religious conflict, 376

salvage-investigational therapy, 482–483

euthanasia, 355, 356–357

exanthematous pustulosis, 199

expectoration, 143

extubation, 140

eye care, 469

F

FACES pain scale, 72, 99

faith. see spiritual care

families

children’s health care decisions, 280–282, 282

communication, 286

education, in developing countries, 396

feelings about death, 450

Hispanic, 303

of homeless persons, 319

immigrants’, 321

multiple infections, 267

parents as caregivers, 412–413

patient’s death, 496, 496–498, 497

provider role, 28

SSI eligibility, 368

TANF program, 368–369

familismo, 303, 306

family history, 52

fans, 148, 149

fatalismo, 303, 306

fatigue

assessment instruments, 63–64

in children, 278

differential diagnosis, 40

at end of life, 500

interventions, 124–125, 128–129

fluid intake

diarrhea patients, 

in terminal patients

withdrawal, 499–5

folliculitis, 186–188

food

drug interactions, 5

homeless persons

foster care, 284–285

Freedburg’s model (of H

friends, 319

funerals, 377–378

fungal infections, 192–1

G

gastrointestinal system

NSAID side effects

opioid side effects

pain syndromes, 8

generalized anxiety diso

goals

of care, 54

discussions, 454

at end of life, 495

grief

anticipation, 330–3

bereaved support, 

vs. depression, 22

influences, 331–33

information resour

provider role, 28, 3

reactions, 337, 342

in rural families, 47

support vocabulary

tasks of, 334–339

theories, 335

vocabulary, 329

Grover’s disease, 200–

growth (physical), 268

guardians

assignment, 285

court appointment

as decision maker

permanent status, 

on standby, 383

guilt

during long illness

mother’s, 472

therapeutic failure, 

H

hair follicles, 180

headaches, 91

healers, traditional, 396

hemoptysis, 152–153

hepatic function, 106

hepatotoxicity

antifungals, 194

HIV-related drugs, 

pemoline, 113

testosterone analo

Index.p65 1590
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

herpes zoster, 93

herpetic whitlow, 190

hiccups, 151

Hispanics, 302–305, 306

histoplasmosis, 193

history, 48–54

HIV

care decision examples, 19

clinical care information resources, 528–529

CNS function, 208

CNS manifestations, 217–218

common symptoms, 14, 15, 38–39

consumer information resources, 530

course of infection, 211

disease trajectory, 493

history components, 49

international focus resources, 531–534

palliative care role, 1–2, 7–12

psychiatric implications, 244–245

resource allocation models, 389

treatment goals, 7–9

treatment in psychiatric populations, 242

treatment paradigms, 9–12, 10

HIV-associated dementia (HAD). see dementia

HIV-gingivitis, 172

HIV-periodontitis, 172

HIV wasting syndrome, 123, 124, 126

home care

assessment, 458–459, 458–460

for children, 280

in developing countries, 393–394, 394

features, 461

homeless persons, 317–320

homesteading, 381

homosexuality, 303, 316–317

hope, 439, 495

hospice

advanced AIDS patients, 488

for children, 280

discussion about, 452

features, 462

Hispanic attitudes, 304

information resources, 519–520

Medicare benefits, 371–372

patient explanation, 456

prisoners, 324

HRSA (Health Resources Services Administration), 1

human herpes virus 8, 197

human papilloma virus, 191, 192

hydration, 499–500

hypersensitivity syndrome, 199

hypoxemia, 136–137, 222

I

image, 173

immigrants. see also Hispanics

information resources, 533

special concerns, 320–323

immune-mediated neuropathies, 93

Medicare, 370–372

Medicare part B, 3

Medigap, 371

private disability, 3

private health cove

Social Security Dis

state programs, 37

intensive care, 486

Internet sites

alphabetic list, 535

caregiver informati

intertrigo

in bed-ridden patie

vs. genital herpes, 

presentation, 193

inverse psoriasis, 200

investigational therapies

itching. see pruritis

J

jails. see prisoners

JCAHO pain standards

jerarquismo, 303, 305, 

K

Kaposi’s sarcoma

image, 206

oral, 172, 175

presenting sympto

of skin, 196–197

visceral, 485

kidneys, NSAID toxicity

KOH prep, 194

L

language

development proce

immigrants’ concer

symptom assessm

symptoms descrip

Latinos. see Hispanics

legacies, 285

legal issues

of immigrants, 321

overview, 365

lichen simplex chronicu

life expectancy, 494

life insurance, 370, 380

life review, 498

limitations, recognizing, 

linear gingival erythema

liver disease, 485–486

living wills. see advance 

long term care, 463

lupus-like syndrome, 19

lymphoma, 135, 218

Index.p65 1591
592 U.S. Department of Health and Human Services • Health Resources and Services Administ

access for homeless persons, 317

availability in developing countries, 398–401

children, dosage adjustment, 269, 269, 276

Memorial Pain Assessment Card (MPAC), 63, 68,

100

Memorial Symptom Assessment Scale (MSAS),

65, 80

memories, preserving, 285, 331, 498

meningitis, 217

mental states

assessment, 208–209

change assessment, 209

differential diagnosis, 207

evaluation, 216, 216–217

exam, 209–210

miliaria, 200–201

minors. see children

molluscum contagiosum, 190–191, 192, 205

mothers, 316

motor impairment, 212

motor skills development, 269–270

mourning, 329. see also grief

movement, near death, 470

MRI (magnetic resonance imaging), 217

multiple loss

bereavement, 333

characteristics, 502

provider role, 28

myelopathy, 218

myoclonus

at end of life, 500

myopathy, 94

myositis, 94–95

N

nausea

in children, 277

treatment options, 160–162

necrotizing ulcerative periodontitis, 168, 172, 175

neoplastic disease, 208

nephrotoxicity, 106, 562

neurological pain syndromes, 90–94

neuropathic pain, 262, 275

neuropathies, 91–92, 92, 94

neuropsychiatric disorders

children, 219

overview, 210–212, 213

treatment protocols, 220–222

neurosyphilis, 217

non-Hodgkin’s lymphoma (NHL), 172, 175, 485

noncardiac chest pain, 151

nummular eczema, 184, 203

nurses, 435, 448–449. see also clinicians

nutrition withdrawal, 499–500

nutritional deficiency, 221

nutritional intake, 123

nutritional neuropathies, 93

nutritionists, 450

, , 

oral hairy leukoplakia, 1

organic mood disorder, 

oropharynx, pain, 89

oxygenation, 145

P

pain

causes in AIDS, 12

classification, 85, 8

iatrogenic, 273

nature, in AIDS pa

syndromes, 86–87

under-treatment, 3

vocabulary, 43

pain assessment

in children, 72, 74

concerns, 95–97

ethics, 350–351

measurement instr

Memorial Pain Ass

pain management

adjuvant drugs, 10

in African America

barriers, 116–117, 

brief inventory, 69–

caregiver’s instruct

in children, 276

children, analgesic

children, assessme

in developing coun

EMLA cream, 273

at end of life, 500

ethics, 355

JCAHO standards

medication availab

methadone-mainta

multimodal concep

non-drug therapies

non-opioids, 104–

opioids, 106–109

overview, 95–104

pharmacologic ove

prayer, 289

precepts, 12–13

prisoners, 324

in substance users

palliative care

and clinical trials, 4

communication ab

core elements, 18

defined, 1, 9

ethical principles, 

information resour

intervention examp

prognostic uncerta

resources in devel

389

role in treatment, 2

WHO definition, 38

Index.p65 1592
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

pastoral care, 293–296

patches (transdermal), 108, 127

pension plans, 380

perinatal infection, 219

periodontal disease, 168, 172

peripheral neuropathy, 563

permanency placement, 247, 285, 382–385

personal belongings, distribution, 378

personalismo, 303, 306

personality disorders, 242–243, 244

pH, gastric, 553–554

pharmacists, 451

pharmacodynamic interactions, 551

pharmacokinetic interactions, 550–551

physical therapists, 451

physicians. see providers

pityriasis rosea, 184

play, 273

pleural effusions, 146, 148

pleurodesis, 148

Pneumocystis carinii pneumonia (PCP)

current history, 136

drug interactions, 564

dyspnea cause, 146

at end of life (should be only partly italic), 486

presenting symptoms, 135

pneumonia (bacterial), 135, 146

policy, in developing countries, 392–394

polymyositis, 95

poor, special needs, 474

post traumatic stress disorder (PTSD), 235

postherpetic neuralgia, 190

prayer. see spiritual care

predominantly sensory neuropathy (PSN) of AIDS,

93

premiums, 369

premiums, insurance, 373

presentismo, 303, 306

pressure ulcers, 507, 507

priests. see chaplains

prisoners, 319, 323–326

probate, 379

prognostic markers, 26, 29–30

prognostication, 278–279

progressive multifocal leukoencephalopathy (PML)

CNS manifestations, 218

vs. dementia (HAD), 219

at end of life, 485

proportionality principle, 356–357, 361

protozoal infections, 208

providers

care team roles, 447–451

children, care sites, 280

communication barriers, professional, 286

communication skills, 433–434, 435

conflict with patients, 9

education, in developing countries, 395–396

education information resources, 524–525

education resources, 397

grieving, 332

palliative care discussions, 438–442

guardians, 383

health care, 374–3

prurigo nodularis, 180, 

pruritis

assessment, 181

associated conditio

diagnosis, 180–18

presentation, 179

skin care, 507

treatment options, 

pseudo-addiction, 259

pseudomembranous ca

psoriasis

image, 204

pain cause, 94

treatment options, 

psoriatic arthritis, 94

psychiatric disorders

anxiety disorders, 

conduct disorders, 

HIV-associated sy

HIV treatment com

misperceptions, 22

mood disorders, 2

overview, 224–225

personality disorde

sleep disorders, 23

substance use, 23

suicide evaluation, 

psychiatric evaluation, 2

psychosis, 224

psychosocial care

assessment quest

of caregivers, 417–

in developing coun

information resour

psychosocial issues

burden, patient as

coping strategies, 

family history, 52

patient expectation

vs. physical sufferi

public perception, 

restoration of healt

timing, 246

public benefits, 322

public health, national i

pulmonary disease, 135

pulmonary embolism, 1

pulmonary secretions, 1

Q

QTC prolongation, 561, 

quality of life

advanced AIDS pa

spiritual health, 29

symptom assessm

Index.p65 1593
594 U.S. Department of Health and Human Services • Health Resources and Services Administ

breathing exercises, 116

caregivers, 419

of children, 273

religion. see spiritual care

remains, declaration as to, 377–378

residential care, 463

resource allocation, 388–390, 389

respiratory depression, 109, 138

respiratory depression treatment, 154

respite care, 421

rheumatological pain syndromes, 94

ringworm. see tinea corporis

rituals

after death, 502

grieving, 343

spiritual health, 296

at time of death, 502

rural patients, 473–474

S

safety, 459

saliva, artificial, 169

salvage therapy, 482

scabies, 195–196, 205

sclerosing cholangitis, 89

seborrheic dermatitis, 185, 200

second line therapy, 482

sedation

airway sedation anxiety, 153–154

case study, 359–362

ethics, 355

opioids, 109

for respiratory distress, 141–142

ventilator discontinuation, 140

sexual abuse, 224

sexual dysfunction, 244–245

shelters, 317, 319

side effects, double effect rule, 354

significant others, 432, 434, 454

signs

vs. symptoms, 39

symptoms monitoring, 65

skilled nursing facilities, 464

skin care

in bed-ridden patients, 200

breakdown risk, 506–507

caregiver’s instruction, 468

in children, 278

decision tree, 510

guidelines, 505

interventions, 506

risk assessment, 508–509

skin health

assessment concerns, 177

bed-ridden patients, 198–201

common epidemiology, 178

sleep, 470

sleep disorders, 237, 237

smoking, 567

spiritual care. see also 

African Americans

aspects, 291–293

assessment quest

of caregivers, 418

grieving, 332, 336

Hispanics, 302–30

historytaking, 53

of homeless perso

imminent death, 49

overview, 289–290

substance users, 2

terminal illness, 29

spirituality, defined, 290

sputum (bloody), 152–1

stigmatization

of caregivers, 412

ethical concerns, 3

grieving, 332

in rural areas, 474

stomatitis, 89

stress

on caregivers, 413

management strat

signs of, 414

substance use

aberrant behavior, 

bereavement, 333

caregiver stress, 4

comorbid condition

vs. depression, 22

drug diversion, 26

palliative care disc

response to treatm

risk assessment, 2

screening, 253–25

symptom assessm

vocabulary, 257–2

substance use disorder

psychiatric treatme

substance users

pain management

psychological, spir

263–2

suffering, 350, 356–357

suicidal ideation, 224

suicide. see also eutha

evaluation, 230–23

risk factor, 231

supernatural experience

Supplemental Security 

support systems, 332, 4

surrogates, 358–359

survivorship, rights of, 3

swallowing difficulty, 16

sweats, 125, 129

symptom assessment

challenges, 45–48

in children, 273–27

clinical considerati

considerations, 61

Index.p65 1594
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

symptom management

advanced AIDS patients, 486–487

assessment principles, 39–45

in children, 272–273

end of life, 499, 500

monitoring, 56

precepts, 13–17

prioritizing, 55

subjective assessment, 43–44

treatment goals, 37

symptoms

vs. bereavement, 334

cause, 272

children, assessment in, 274–276, 275

discussion about, 455

etiology assessment, 55

independence of signs, 41

referral to provider, 467

vs. signs, 39

vocabulary choices, 42–43

systems review, 51

T

taste, 169, 170

Temporary Assistance to Needy Families (TANF),

368–369

tenancy by the entirety, 380

terminal illness

insurance definition, 370

Medicare hospice benefits, 371

spiritual care, 290–291

spiritual needs, 289

thoracentesis, 148

thrombocytopenia, 106

thrush, 193, 194

tinea corporis, 184, 205

tinea infections

in bed-ridden patients, 199–200

diagnosis, 193–194

presentation, 193

treatment, 194

tolerance, 259, 261

torsades des pointes. see QTC prolongation

toxic epidermal necrolysis, 198

toxic neuropathies, 93

traditional healers, 396

transformation, 344–345

trust, 256, 308–309

trusts, 381

tuberculosis

dyspnea cause, 146

presenting symptoms, 135

risks of, 475

g, , 

United Kingdom, 403

United States, 403

V

varicella zoster virus

described, 190

treatment options, 

vasculitis, 199

ventilation

discontinuation in 

at end of life, 486, 

use in terminal pat

viatication, 370

viral infections

central nervous sy

of skin, classified, 

of skin, treatment o

volunteers, 396

vomiting, 160–162, 277

W

waiting periods, 367, 37

warts, 191, 192

websites

alphabetic list, 535

caregiver informati

WHO analgesic ladder, 

wills. see also advance 

described, 381

estate planning, 37

guardians for child

women

androgen administ

emotional needs, 4

pain, 88

X

xerosis, 183

Z

zoster ophthalmicus, 19

Index.p65 1595
596 U.S. Department of Health and Human Services • Health Resources and Services Administ

abacavir (Ziagen)

drug interactions, 581–582

rash cause, 563

SCF penetration, 220

acetaminophen, 125, 130

acyclovir

neuropsychiatric side effects, 223

oral herpes simplex, 168

VCV treatment, 192

adefovir, 562

adjuvant analgesics, treatment guidelines, 109–114

Agenerase. see amprenavir

alclometasone, 182

alfentanyl, 571

alprazolam, 110, 571

alternative therapies, information resources, 534

Ambien. see zolpidem

aminoglycosides, 562

amitriptyline (Elavil)

pain management, 110, 111, 112

sleep aid, 239

amoxicillin, 189

amphetamines, 228, 577

amphotericin

histoplasmosis, 195

nephrotoxicity, 562

amphotericin B

cryptococcosis, 195

neuropsychiatric side effects, 223

ampicillin, 189

amprenavir (Agenerase)

drug interactions, 577–579

ketoconazole interaction, 554

rash cause, 563

SCF penetration, 220

vitamin E interaction, 561

analgesics

adjustments, 109–114

anti-HIV drugs, 114

for children, 277

drug interactions, 114

WHO ladder, 95, 96

antacids, 579, 581

antiarrhythmics

NNRTI interaction, 579

PI interactions, 577

protease inhibitors interactions, 573

QTC prolongation, 561

antibiotics

QTC prolongation, 561

in terminal patients, 137

anticholinergics, 125, 163

anticoagulants

cumulative effect, 561

pain management, 110

warfarin, 567

anticonvulsants, 113, 400

antidepressants

anxiety treatment, 236

basic drug list, 400

characteristics, 229

pain management, 

PI interactions, 574

in substance users

antidiarrheals, 400

antiemetics, 161, 399

antiepileptics, 580

antifungals

alternative agents, 

Candida esophagit

dermatophytes, 19

drug interactions, 5

oral candidiasis, 17

antihistamines

alternative agents, 

atopic dermatitis, 1

basic drug list, 400

eczema, 183, 184

expectoration, 143

pain management, 

pruritis, 182

sleep aid, 239

vomiting relief, 162

antimotility agents, 159

antipsychotics

basic drug list, 400

NRTI interaction, 5

PI interactions, 574

antipyretics, 125

antiretroviral therapy

children, end of life

food, effects of, 553

use in psychiatric p

psychotropics inter

antivirals, 171

anxiolytics, 582

appetite stimulants, 124

aspirin, 105

astemizole

NNRTI interactions

PI interactions, 573

ritonavir interaction

atavoquone, 564

Ativan. see lorazepam

atropine, 144, 145

azithromycin, 189

azole antifungals, 553–

AZT. see zidovudine

B

baclofen

hiccup treatment, 1

pain management, 

Bactrim. see sulfametho

benzodiazepines

airway obstruction 

anxiety treatment, 

basic drug list, 400

inhibition, 567

interaction with sm

NNRTI interaction, 

Index.p65 1596
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

betamethasone, 182

bisacodyl, 160

blood thinners. see anticoagulants

bronchodilators, 149, 150

bupropion (Wellbutrin)

anxiety adjustment, 236

depression, 228

ritonavir interaction, 560

buspirone, 229

butyrophenones

pain management, 110

vomiting relief, 161, 163

C

calcium channel blockers, interactions, 573, 577,

579

cannabinoids, 162, 163

capsaicin, 114

carbamazepine, 110, 113, 574

casanthranol, 160

cefadroxil, 189

cephalexin, 189

chemotherapy

bone marrow suppression, 562

NNRTI interaction, 581

chlorhexidine gluconate, 168

chlorpromazine, 152

choline magnesium trisalicylate, 105, 125, 130

cidofovir, 562

cimetidine, 104, 125, 130

cisapride, 573, 577, 579

citalopram, 228

clarithromycin

cellulitis, 189

NNRTI interaction, 580

ritonavir interaction, 560

clindamycin, 563, 564

clobetasol, 182

clomiprimine, 110

clonazepam

anxiety, 229

insomnia, 229

pain management, 110

panic/OCD, 228

PI interactions, 575

clonidine, 229

clorazepate (Tranxene), 229, 571

clotrimazole, 168, 194

cocaine

HIV replication, 570

NNRTI interaction, 581

NRTI interaction, 582

PI interactions, 571, 577, 579

codeine

cough relief, 150, 151

mild pain dosing, 105

PI interactions, 571

cognitive behavioral therapy, 236

complementary and alternative therapies, 534

basic drug list, 400

drug interactions, 5

dyspnea, 149

eczema, 184

fatigue, 125, 129

fever, 125

MAC patients, 129

pain management, 

pruritis, 182, 182

cotrimoxazole

neuropsychiatric si

pancreatitis cause, 

rash cause, 563

crixivan, 573–577

cryotherapy, 92

cyclizine, 163

cycloserine, 223

Cylert. see pemoline

D

dapsone

bone marrow supp

drug interactions, 5

rash cause, 563

Darvon. see propoxyph

ddC. see zalcitabine

ddI. see didanosine

delavirdine (Rescriptor)

drug interactions, 5

hepatotoxicity, 562

SCF penetration, 2

Demerol. see meperidin

desipramine (Norprami

pain management, 

ritonavir interaction

sleep aid, 239

desonide, 182

desoximetasone, 182

Desyrel. see trazodone

dexamethasone

appetite stimulation

fever, 125, 130

MAC patients, 129

pain management, 

vomiting relief, 163

dextroamphetamine

cognitive impairme

depression treatme

fatigue, 125

pain management, 

diazepam (Valium)

hemoptysis anxiety

PI interactions, 571

sedation dosing, 14

diclozacillin, 189

didanosine (Videx, ddI)

diarrhea cause, 56

drug interactions, 5

interactions, 554

neuropsychiatric si

Index.p65 1597
598 U.S. Department of Health and Human Services • Health Resources and Services Administ

vomiting relief, 163

diphenoxylate/atropine, 159

disulfuram (Antabuse), 229, 240, 576

docusate, 160

dolasetron, 163

doxepine (Sinequan), 110, 239

dronabinol

appetite stimulation, 124, 127

PI interactions, 571

vomiting relief, 163

drug interactions

with disease states, 551–552

overview, 549–550

d4T. see stavudine

Duragesic. see fentanyl

E

ecstasy (MDMA)

NNRTI interactions, 581

NRTI interactions, 582

PI interactions, 576, 578

side effects, 570

efavirenz (Sustiva)

drug interactions, 579–581

hepatotoxicity, 562

ketoconazole interaction, 554

neuropsychiatric side effects, 223

SCF penetration, 220

Elavil. see amitriptyline

EMLA cream, 273

ergotamines, interactions, 575, 578, 580

erythromycin, 187, 189

erythropoietin, 128

escitalopram, 228

estazolam, 571

estrogens, 568

ethinyl estradiol, 560, 568

F

Feldene. see piroxicam

fentanyl (Duragesic)

dyspnea relief, 150

moderate pain dosing, 107

PI interactions, 571

transdermal administration, 108

fiber, 160

fluconazole

Candida esophagitis, 164

cryptococcosis, 195

hepatotoxicity, 562

oral candidiasis, 168

flucytosine, 562

fluocinonide (Lidex), 168, 182

fluoroquinolones, 554, 583

fluoxetine (Prozac)

fortovase, 577–579

foscarnet, 223, 562

G

gabapentin

bipolar disorder tre

pain management, 

ganciclovir, 562

garlic, 576

glucocorticoids, 163

glycopyrrolate, 125, 130

granisetron, 163

growth hormone, 128

guaifenesin, 144

H

H2-receptor antagonist

alternative agents, 

NNRTI interaction, 

NRTI interaction, 5

vomiting relief, 162

HAART

effecting survival, 4

life expectancy, 49

Halcion. see triazolam

halobetasol, 182

haloperidol

hiccup treatment, 1

late stage dementi

pain management, 

vomiting relief, 163

herbal remedies

blood thinners, 567

drug interactions, 5

heroin, 571, 577

Hivid. see zalcitabine

HMG-CoA reductase in

drug interactions, 5

hydrocodone

cough relief, 150, 1

PI interactions, 571

hydrocortisone, 182, 20

hydromorphone, 107, 5

hydroxyurea, 562

hydroxyzine

pain management, 

sleep aid, 239

vomiting relief, 163

hyoscyamine, 125, 130

I

ibuprofen, 105, 125

imipramine, 110, 228

immunoglobin, 198

indinavir

Index.p65 1598
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

itraconazole (Sporanox)

gastric pH, 553–554

PI interactions, 575, 578

ivermectin, 196

K

Kaletra. see lopinavir; ritonavir

ketamine (special K), 577

ketoconazole (Nizoral)

absorption, 194

drug interactions, 554

folliculitis, 187

gastric pH, 553–554

hepatotoxicity, 562

PI interactions, 575, 578

seborrheic dermatitis, 185

L

lactulose, 160

lamivudine (3TC)

neuropsychiatric side effects, 223

pancreatitis cause, 562

SCF penetration, 220

lamotrigine, 228

laxatives, 160, 399

levorphanol, 107

Lidex. see fluocinonide

lidocaine, 151, 151

lindane, 196

liposomal anthracyclines, 197

lithium carbonate, 228

local anesthetics, 110, 114

loperamide, 159

lopinavir (Kaletra), 563

lorazepam

anxiety, 229

depression, in children, 278

dyspnea, 149, 150

hemoptysis, 153

insomnia, 229

late stage dementia, 222

panic/OCD, 228

sedation dosing, 141, 141

sleep aid, 238

vomiting relief, 163

lorazepam (Ativan), 238

LSD, interactions

NNRTIs, 581

NRTIs, 582

PIs, 577, 579

Luvox. see fluvoxamine

megestrol acetate

appetite, in children

appetite stimulation

side effects, 126

meperidine (Demerol)

moderate pain dos

PI interactions, 571

ritonavir interaction

in substance users

methadone

antiretroviral intera

maintenance progr

moderate pain dos

NNRTI interaction, 

opiate dependence

opiate withdrawal, 

pain management, 

PI interactions, 571

methotrexate, 223

methotrimeprazine, 110

methylphenidate

cognitive impairme

depression treatme

fatigue, in children, 

fatigue treatment, 1

pain management, 

metoclopramide, 152, 1

metronidazole, 187

mexiletine, 110, 114

midazolam

cautions, in childre

hemoptysis, 153

hiccups, 152

PI interactions, 571

sedation dosing, 14

mirtazapine, 228

misoprostol, 104

modafinil, 110, 113, 220

mometasone, 182

morphine

cough relief, 150–1

dyspnea treatment

moderate pain dos

PI interactions, 571

morphine equivalents, 1

mupirocin, 189

Mycobutin. see rifabutin

N

N-acetylcysteine, 143, 

naloxone, 154

naltrexone, 240

narcotic analgesics, 25

narrow-therapeutic-inde

nefazodone

depression, 228

pain management, 

sleep aid, 238

Index.p65 1599
600 U.S. Department of Health and Human Services • Health Resources and Services Administ

hepatotoxicity, 562

ketoconazole interaction, 554

ritonavir interaction, 560

SCF penetration, 220

nitrofurantoin, 563

Nizoral. see ketoconazole

NNRTIs (non-nucleoside reverse transcriptase

inhibitors)

hepatotoxicity, 562

rash cause, 563

non-opioid analgesics, 104–106, 399

Norpramin. see desipramine

nortriptyline (Pamelor)

pain management, 110

sleep aid, 239

Norvir. see ritonavir

NSAIDs (nonsteroidal anti-inflammatory drugs)

fever reduction, 130

protease inhibitors interactions, 575

renal toxicity, 106

treatment guidelines, 104–106

nystatin, 200

O

octreotide, 159

olanzapine, 225, 228

olanzapine (Clozaril), 560, 574

omeprazole, 104, 567

ondansetron, 163

opiates, 571

opioid analgesics

administration in substance users, 262

airway obstruction anxiety, 153

alternative agents, 582

and antidepressants, 112

basic drug list, 399

classes, 108

constipation cause, 109

diarrhea treatment, 159

dyspnea relief, 148

noncardiac chest pain, 151

protease inhibitors interactions, 571, 575

regulation, WHO guidelines, 400–401

routes of administration, 108

side effects, 109

SSRI interaction, 559

in terminal patients, 138–139

treatment guidelines, 106–109

Orap. see pimozide

oromethazine, 163

oxandrolone, 128

oxycodone

mild pain dosing, 105

moderate pain dosing, 107

PI interactions, 571

oxygen therapy, 136–137, 148, 149

p

paregoric

diarrhea treatment

paroxetine (Paxil)

CYP450 inhibition, 

depression, 228

pain management, 

panic/OCD, 228

pemoline (Cylert)

cognitive impairme

depression, 228

fatigue, 125, 129

pain management, 

penicillin G, 189

penicillin G-benzathine, 

penicillin V, 189

penicillin VK (potassium

pentamidine

bone marrow supp

drug interactions, 5

nephrotoxicity, 562

neuropsychiatric si

pancreatitis cause, 

pentobarbital, 141, 142

permethrin, 196

perphenazine, 575

phenobarbital

PI interactions, 574

sedation dosing, 14

phenothiazines, 110, 16

phenytoin, 110, 574

pimozide (Orap), 110, 5

piroxicam (Feldene), 56

PIs. see protease inhib

prednisone, 124, 127

primaquine, 564

procabazine, 223

prochlorperazine, 163

promethazine, 163

propoxyphene (Darvon)

protease inhibitors

hepatotoxicity, 562

ritonavir boost, 555

SCF penetration, 2

protease inhibitors (inte

abused drugs, 571

antidepressants, 5

illicit drugs, 569–57

opioid analgesics, 

statins, 568

proton pump inhibitors

NNRTI interaction, 

NRTI interaction, 5

vomiting relief, 162

Prozac. see fluoxetine

psychostimulants

fatigue treatment, 1

neuropsychiatric di

pain management, 

Index.p65 1600
U.S. Department of Health and Human Services • Health Resources and Services Administration • H

quetiapine, 228

quinolones, 223

R

ranitidine, 104

red flag medications, 583–584

Rescriptor. see delavirdine

Restoril. see temazepam

Retrovir. see zidovudine

ribavirin, 562

rifabutin (Mycobutin)

hepatotoxicity, 562

NNRTI interaction, 580

PI interactions, 575, 578

ritonavir interaction, 560

rifampin

benzodiazapines, 567

hepatotoxicity, 562

ketoconazole interaction, 554

NNRTI interaction, 580

PI interactions, 575, 578

risperidone

depression, 225

PI interactions, 575

psychosis treatment, 228

ritonavir (Norvir)

CYP inhibition, 565

CYP3A4 inhibitor, 555

diarrhea cause, 563

drug interactions, 114, 555–556, 565, 573–

577

ketoconazole interaction, 554

and marijuana, 570

SCF penetration, 220

rofecoxib, 125, 130

S

salicylates, 104

salicylic acid, 196

saliva, artificial, 169

saquinavir

diarrhea cause, 563

drug interactions, 577–579

ritonavir interaction, 560

SCF penetration, 220

scopolamine

pulmonary secretions, 144, 145

sweats treatment, 130

vomiting relief, 163

senna, 160

serotonin antagonists, 161, 163

sertraline

depression, 228

pain management, 110

panic/OCD, 228

sildenafil (Viagra), interactions

NNRTIs, 581

PIs, 571, 576, 578

anxiety, 236

drug interactions, 5

pain management, 

St. John’s wort, interact

statins

alternative agents, 

drug interactions, 5

NNRTI interaction, 

PI interactions, 573

stavudine (Zerit, d4T)

neuropsychiatric si

pancreatitis cause, 

and peripheral neu

SCF penetration, 2

steroids, 171

substituted benzamides

sulfadiazine, 562

sulfamethoxazole (Bact

sulfonamides, 223

Sustiva. see efavirenz

T

tacrolimus, 185

3TC. see lamivudine

temazepam (Restoril), 2

testosterone

HIV wasting treatm

sexual dysfunction 

testosterone analogues

thalidomide, 182

theophylline, 573

thiabendazole, 223

thioridazine, 575

tincture of opium. see p

topiramate, 228

trazodone (Desyrel)

insomnia treatmen

pain management, 

sleep aid, 238

triamcinolone, 182

triazolam (Halcion), 559

tricyclic antidepressants 

trimethoprim-sulfametho

trimetrexate, 562

U

urea, 196

V

valacyclovir, 192

Valium. see diazepam

valproate, 110

valproic acid

bipolar disorder tre

hiccup treatment, 1

pancreatitis cause, 

Index.p65 1601
602 U.S. Department of Health and Human Services • Health Resources and Services Administ

Viramune. see nevirapine

W

warfarin, 567

Wellbutrin. see bupropion

Z

zalcitabine (Hivid, ddC)

esophagitis cause, 89

neuropsychiatric side effects, 223

pancreatitis cause, 89

and peripheral neuropathy, 563

SCF penetration, 220

stomatitis cause, 89

zaleplon (Sonata), 229, 238

Zerit. see stavudine

Ziagen. see abacavir

zidovudine (AZT, Retrovir)

bone marrow suppression, 562

drug interactions, 581–582

esophagitis cause, 89

neuropsychiatric side effects, 223

SCF penetration, 220

zolpidem (Ambien)

insomnia, 229

PI interactions, 571

ritonavir interaction, 560

sleep aid, 238

Index.p65 1602
FrontMatter.p65 2 1/28/03, 10:27 AM


	
 



 


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Part I:

Introduction

Part II:

Management of

Advanced HIV

Disease

Part III:

Psychosocial,

Cultural,

& Ethical

Issues

Part IV:

Care at the

End of Life

Part V:

References for

 the Clinician

U. S. Department of Health and Human Services Health Resources and Services Administration • 

TofC.p65 2 1/28/03, 10:25 AM