Clinical Guide > HIV Treatment > Palliative Care

# Palliative Care and HIV

January 2011

### Chapter Contents

      - Background 
      - Palliative Care in the Era of Antiretroviral Therapy
      - S: SubjectiveO: ObjectiveA/P: Assessment and PlanPatient EducationReferencesTable 1. Common Symptoms in Patients with AIDS and Possible Disease-Specific and Palliative InterventionsBackground 
Palliative care is not curative care, but is supportive, symptom-oriented care. It may be needed at any point in the course of disease progression to relieve patients' suffering and promote quality of life. Palliative care is important for patients with any medical condition, even if they are not actively in hospice. It may be used in conjunction with disease-specific care or as the sole approach to care. Palliative care includes the following: 	
- Management of symptoms (e.g., fatigue, pain)
- Treatment of adverse effects (e.g., nausea, vomiting)
- Psychosocial support (e.g., depression, advance care planning)
- End-of-life care

The U.S. Health Resources and Services Administration (HRSA) HIV/AIDS Bureau Working Group on Palliative Care in HIV has provided the following working definition of palliative care:

Palliative care is patient- and family-centered care. It optimizes quality of life by active anticipation, prevention, and treatment of suffering. It emphasizes use of an interdisciplinary team approach throughout the continuum of illness, placing critical importance on the building of respectful and trusting relationships. Palliative care addresses physical, intellectual, emotional, social, and spiritual needs. It facilitates patient autonomy, access to information, and choice.

(Excerpted from: *HRSA Working Group on HIV and Palliative Care Palliative and Supportive Care*. HRSA Care ACTION, July 2000)

Palliative care for patients with HIV infection comprises a continuum of treatment consisting of therapy directed at AIDS-related illnesses (e.g., infection or malignancy) and treatments focused on providing comfort and symptom control throughout the lifespan. This care may involve multidimensional and multidisciplinary services, including HIV medicine, nursing, pharmacy, social work, complementary or alternative medicine, and physical therapy.
Palliative Care in the Era of Antiretroviral Therapy
With advances in HIV-specific therapy and care, HIV infection is no longer a rapidly fatal illness. Instead, patients who are able to tolerate antiretroviral therapy (ART) often experience a manageable, chronic illness.

The death rate from AIDS, however, continues to be significant: approximately 14,000 per year in the United States. In many parts of the world, patients still are not able to obtain specific treatments for HIV or for opportunistic illnesses, and supportive or palliative care may be the primary mode of care available to patients with advanced AIDS. Regardless of access to disease-specific treatment, people living with HIV continue to experience symptoms from HIV disease and its comorbid conditions, and those taking ART may experience adverse effects. Integrating palliative care and disease-specific care is important for treating patients with HIV in order to promote quality of life and relieve suffering.
S: Subjective
The patient with advanced HIV disease complains of one or more of the following: 
- Agitation
- Anorexia
- Chronic pain
- Constipation
- Cough
- Decubitus ulcers or pressure sores
- Delirium
- Dementia
- Depression
- Diarrhea
- Dry mouth
- Dry skin
- Dyspnea
- Fatigue
- Fever
- Hiccups
- Increased secretions ("death rattle")
- Nausea
- Pruritus
- Sleep disturbance
- Sweats
- Vomiting
- Weakness
- Weight loss
O: Objective
Conduct a complete symptom-directed physical examination.

To evaluate pain, please refer to chapter *Pain Syndrome and Peripheral Neuropathy*.
A/P: Assessment and PlanTreatment
Common symptoms of persons with late-stage HIV infection and their possible causes are listed in Table 1. Also included are disease-specific treatments and palliative interventions. Depending on the situation, either or both of these types of treatments may be appropriate. Consider the patient's disease stage and symptom burden, the risks and benefits of therapies, and the patient's wishes.

When assessing each of the patient's symptoms, include the psychiatric review of symptoms (depression, anxiety, psychosis), and consider the following aspects of each symptom: 
- Onset, progression, frequency, severity
- Degree of distress and impact on function
- Aggravating and alleviating factors
- Previous treatments and their efficacy
- What the patient believes is causing the symptom
- Coping strategies and supports
- The patient's personal goals of care with this particular symptom

**Practitioners should note that some of the palliative treatments may have substantial long-term adverse effects and should be used to alleviate symptoms only in late-stage or dying patients.**
Table 1. Common Symptoms in Patients with AIDS and Possible Disease-Specific and Palliative InterventionsSymptomPossible Causes Disease-Specific or Curative Treatment Palliative Treatment 
Abbreviations: ART = antiretroviral therapy; CNS = central nervous system; GERD = gastroesophageal reflux disease; NMDA = Nmethyl- D-aspartate; NSAID = nonsteroidal antiinflammatory drug; SNRI = serotonin norepinephrine reuptake inhibitor; SSRI = selective serotonin reuptake inhibitor

Adapted from Selwyn PA, Rivard M. *Palliative care for AIDS: Challenges and opportunities in the era of highly active anti-retroviral therapy*. Innovations in End-of-Life Care. 2002;4(3).
CONSTITUTIONALFatigue, weakness- AIDS
- Opportunistic infection
- Anemia
- Hypoandrogenism
- ART
- Treat specific infections
- Erythropoietin, transfusion
- Testosterone/androgens in men with concomitant hypogonadism; for women, androgens are investigational and not approved by the U.S. Food and Drug Administration for this use
- Psychostimulants: give in the morning; also useful as treatment for depression and sedation owing to opioids; avoid in patients with anxiety and agitation (methylphenidate, dextroamphetamine, modafinil; pemoline is not first-line because of hepatotoxicity risk)
- Corticosteroids (prednisone, dexamethasone)
Weight loss/anorexia- HIV
- Malignancy
- ART
- Specific treatment of malignancy
- Nutritional support
- Testosterone/androgens in men with hypogonadism (see above)
- Oxandrolone for 2-4 weeks courses; an anabolic steroid that may be a useful adjunct, can help increase lean body mass but also has virilizing effects
- Megestrol acetate can improve appetite and fatigue but has not been shown to improve nutritional status; possible adverse effects include deep vein thrombosis, glucose intolerance, and hypoandrogenism in men
- Dronabinol is a cannabinol derivative that helps increase appetite but over the long term (≥12 months) does not significantly increase weight
- Recombinant human growth hormone can improve lean body mass, but is associated with significant side effects (headache, edema, myalgias) and is expensive; consider for patients with severe wasting if no other therapies are effective
- Corticosteroids can help increase appetite in the short term but not increase weight, and the duration of effect is short-lived
Fevers, sweats- Disseminated  Mycobacterium avium  complex and other infections
- HIV lymphoma, and other malignancies
- Specific treatment of opportunistic infection or malignancy
- ART
- Acetaminophen
- NSAIDs (ibuprofen, naproxen, indomethacin)
- Anticholinergics can be useful for sweats (hyoscyamine, glycopyrrolate)
- H2-antagonists can be useful for sweats (ranitidine, famotidine; dose at least 12 hours apart from atazanavir; note that cimetidine should be avoided in patients taking fosamprenavir or delavirdine because of drug interactions)
PAINNociceptive, somatic, visceral- Opportunistic infections
- HIV-related malignancies, nonspecific
- Specific treatment of disease entities
- See chapter  Pain Syndrome and Peripheral Neuropathy  for detailed treatment options
- Refer to the World Health Organization (WHO) analgesic ladder: NSAIDs and opioids
- Corticosteroids can be useful for treating inflammatory-mediated pain, often as an adjunct to opioids (may worsen some conditions)
- Benzodiazepines or muscle relaxants for muscle spasms (clonazepam, diazepam, baclofen)
- Nonpharmacologic therapies (e.g., massage, physical therapy)
Neuropathic- HIV-related peripheral neuropathy
- Cytomegalovirus
- Varicella zoster virus
- Medications (e.g., stavudine, isoniazid, vincristine)
- ART
- Discontinue offending medication
- Change antiretroviral or other regimen
- See chapter  Pain Syndrome and Peripheral Neuropathy  for detailed treatment options
- Refer to the WHO analgesic ladder: NSAIDs and opioids
- Neuropathic pain medications:    - Tricyclics (nortriptyline, imipramine)
  - Anticonvulsants (gabapentin, pregabalin, lamotrigine)
  - Benzodiazepines can be useful adjuncts (clonazepam, diazepam, baclofen)
- Corticosteroids can be useful for treating inflammatory-mediated pain, often as an adjunct to opioids (may worsen some conditions)
- Acupuncture
GASTROINTESTINALNausea, vomiting- Antiretroviral medications
- Esophageal candidiasis
- Cytomegalovirus
- Specific treatment of disease entities
- Change antiretroviral regimen
- Dopamine antagonists (prochlorperazine, haloperidol)
- Prokinetic agents (metoclopramide)
- Antihistamines (diphenhydramine, promethazine, meclizine)
- Anticholinergics (hyoscyamine, scopolamine)
- Serotonin antagonists (granisetron, ondansetron, dolasetron)
- Somatostatin analogues in patients with bowel obstruction, to reduce gut motility; can be used with anticholinergics (octreotide)
- Benzodiazepines (lorazepam)
- Marijuana, dronabinol can help increase appetite
Diarrhea- Mycobacterium avium  complex
- Cryptosporidiosis
- Cytomegalovirus
- Microsporidiosis
- Other intestinal infections
- Malabsorption
- Medications (e.g., protease inhibitors)
- Specific treatment of disease entities
- Discontinue offending medication
- Bismuth, methylcellulose
- Psyllium
- Kaolin
- Diphenoxylate + atropine
- Loperamide
- Calcium carbonate
- Ferrous sulfate
- Tincture of opium for severe chronic diarrhea unresponsive to other therapies
- Octreotide for profuse, refractory watery diarrhea; expensive and needs subcutaneous administration
Constipation- Dehydration
- Malignancy
- Anticholinergic medications
- Opioids
- Reduced activity
- Hydration
- Radiation and chemotherapy
- Medication adjustment
- Activity/diet modification
- Prophylaxis for patients taking opioids with docusate + senna
- Peristalsis-stimulating agents:    - Anthracenes (senna)
  - Polyphenolics (bisacodyl)
  - Softening agents:      - Surfactant laxatives (docusate)
    - Bulk-forming agents (bran, methylcellulose)
    - Osmotic laxatives (lactulose, sorbitol)
    - Saline laxatives (magnesium hydroxide)
RESPIRATORYDyspnea- Pneumocystis jiroveci  pneumonia
- Bacterial pneumonia
- Anemia
- Pleural effusion, mass, or obstruction
- Decreased respiratory muscle function
- Specific treatment of disease entities
- Erythropoietin, transfusion
- Drainage, radiation, or surgery
- Use of fan, open windows
- Relaxation techniques, massage, guided imagery
- Oxygen supplement titrated to comfort, if the patient is hypoxic
- Bronchodilators (albuterol, ipratropium, inhaled steroids) if there is bronchospasm
- Opioids, particularly morphine, to decrease sense of air hunger and respiratory rate
- Benzodiazepines (e.g., lorazepam) to reduce the anxiety that often accompanies dyspnea
Cough- Pneumocystis jiroveci  pneumonia
- Bacterial pneumonia
- Tuberculosis
- Acid reflux
- Postnasal drip
- Specific treatment of disease entities
- Cough suppressants (dextromethorphan, codeine, hydrocodone, morphine, aerosolized lidocaine)
- Bronchodilators (albuterol, ipratropium, inhaled steroids) if there is bronchospasm
- H2-blockers or proton-pump inhibitors (ranitidine, omeprazole) if there is acid reflux (caution: possible interactions with atazanavir)
- Decongestants (pseudoephedrine, phenylephrine, steroid nasal sprays) for postnasal drip
Increased secretions ("death rattle")- Fluid shifts
- Ineffective cough
- Sepsis
- Pneumonia
- Antibiotics as indicated
- Atropine, hyoscyamine, transdermal scopolamine, glycopyrrolate
- Fluid restriction, discontinue intravenous fluids
Hiccups- Aerophagia (swallowing air)
- Candida  and other causes of esophagitis including GERD
- Vagus and phrenic nerve irritation
- CNS mass lesions
- Uremia
- Alcohol intoxication
- Anesthesia
- Treatment of underlying etiology (e.g., antifungals for  Candida  esophagitis, acid reducers for GERD)
- Metoclopramide can promote gastric emptying
- Chlorpromazine (antipsychotic) can reduce the CNS response, start at low dosage to reduce the risk of dystonia and drowsiness
- Baclofen can reduce the CNS response
DERMATOLOGICDry skin- Dehydration
- End-stage renal disease
- End-stage liver disease
- Malnutrition medications (e.g., indinavir)
- Hydration
- Dialysis
- Nutritional support
- Discontinue offending medication
- Avoid soaps, most of which dry the skin further
- Emollients with or without salicylates
- Emollients with urea (e.g., Ultra Mide 25)
- Emollients with lactate (e.g., Lac-Hydrin)
- Lubricating ointments or creams (e.g., petrolatum, Eucerin)
Pruritus- Fungal infection
- End-stage renal disease
- End-stage liver disease
- Dehydration; dry skin
- Eosinophilic folliculitis
- Opioid side effect
- Antifungal agents (e.g., itraconazole for eosinophilic folliculitis)
- Dialysis
- Hydration
- Topical corticosteroids
- Avoid soaps and hot baths/showers
- Warm compresses
- Treatments for dry skin, as above
- Topical agents (menthol, phenol [e.g., Sarna lotion], calamine, doxepin, capsaicin)
- Antihistamines (hydroxyzine, doxepin, diphenhydramine)
- Corticosteroids (topical or systemic)
- Opioid antagonists (naloxone, naltrexone) can be useful for treating uremic and biliary-associated pruritus
- Antidepressants
- Anxiolytics
- Thalidomide in intractable pruritus, but beware of side effects, including neuropathy
Decubitus ulcers, Pressure sores- Poor nutrition
- Decreased mobility, prolonged bed rest
- Increase mobility
- Enhance nutrition
- Prevention (nutrition, mobility, skin integrity
- Wound protection (semipermeable film, hydrocolloid dressing)
- Debridement (normal saline, enzymatic agents, alginates)
NEUROPSYCHIATRICDelirium/agitation- Electrolyte imbalances, glucose abnormalities
- Dehydration
- Hypoxia
- Toxoplasmosis
- Cryptococcal meningitis
- CNS masses and metastases
- Sepsis
- Medication adverse effects (e.g., benzodiazepines, opioids, efavirenz, corticosteroids)
- Intoxication or withdrawal
- Correct imbalances
- Hydration
- Oxygen supplementation
- Specific treatment of disease entities
- Discontinue offending medications
- Neuroleptics (haloperidol, risperidone, chlorpromazine) to induce sedation in severe agitation
- Benzodiazepines (e.g., lorazepam, diazepam, midazolam) in the "terminal restlessness" of the last few days of life to relieve myoclonus, seizures, restlessness (Note: in some patients, these may have adverse effects)
Dementia- HIV-associated dementia
- Other dementia (e.g., Alzheimer dementia, Parkinson dementia, multi-infarct dementia)
- ART
- Psychostimulants (methylphenidate)
- Memantine (NMDA antagonist) has been used in patients with Alzheimer dementia but has unclear benefit for patients with HIV-associated dementia
- Low-dose neuroleptics (haloperidol, chlorpromazine) can be useful in psychotic delirium
Depression- Chronic illness
- Reactive depression, major depression
- Antidepressants
- Antidepressants are useful when the patient has a life expectancy of several months or more: SSRIs, SNRIs, mirtazapine (useful in lowest dosages for insomnia), bupropion, (though beware of lowering the seizure threshold); note that tricyclic antidepressants are not considered first- or second-line therapy owing to side effects though they may be useful for treating refractory melancholic or delusional depression (see chapter  Depression  for further information, including dosages)
- Psychostimulants are useful for patients who have urgent, severe depression or are weeks from death (methylphenidate, pemoline, dextroamphetamine, modafinil)
Advance Care Planning
Advance care planning involves planning for future medical care. Two main documents are produced: 
- Advance directive (living will)
- Health care proxy (a person to speak for the patient or make decisions if the patient is too sick to do so)

The clinician should initiate these conversations and make referrals to helpful resources.
Patient Education- Discuss advance care planning with patients, and the option of hospice care, if appropriate.
- Provide patients and their family members with detailed information so that they understand the illness and associated treatments.
- Instruct patients to discuss their pain or other bothersome symptoms with their health care providers.
- Encourage patients to talk with their health care providers if they are feeling anxious, depressed, or fearful.
- Discuss with patients what their death might be like. Some patients may feel relieved to be able to talk openly about their last days. Assure them that their pain will be controlled and that their health care providers will be there to help them.
References- American Academy of HIV Medicine.  Palliative Care . In:  The HIV Medicine Self-Directed Study Guide  (2003 ed.). Los Angeles: American Academy of HIV Medicine; 2003.
- American Academy of HIV Medicine. Palliative Care and End-of-Life Support. In: AAHIVM Fundamentals of HIV Medicine (2007 ed.). Washington: American Academy of HIV Medicine; 2007.
- National Hospice Organization.  Guidelines for Determining Prognosis for Selected Non-Cancer Diagnoses . Alexandria, VA: National Hospice Organization; 1996.
- O'Neill JF, McKinney M.  Care for the Caregiver . In: O'Neill JF, Selwyn PA, Schietinger H, eds.  The Clinical Guide to Supportive and Palliative Care for HIV/AIDS . Rockville, MD: Health Resources and Services Administration; 2003.
- Selwyn PA, Rivard M.  Palliative care for AIDS: challenges and opportunities in the era of highly active anti-retroviral therapy . J Palliat Med. 2003 Jun;6(3):475-87.
- University of Washington Center for Palliative Care Education.  Module 1: Overview of HIV/AIDS Palliative Care .
- U.S. Health Resources and Services Administration.  A Guide to Primary Care of People with HIV/AIDS, 2004 Edition . Rockville, MD: Health Resources and Services Administration; 2004;123-131.
- Weinreb NJ, Kinzbrunner BM, Clark M.  Pain Management . In: Kinzbrunner BM, Weinreb NJ, Policzer JS, eds.  20 Common Problems: End-of-life Care . New York: McGraw Hill Medical Publishing Division; 2002;91-145.
- World Health Organization.  Cancer Pain Relief and Palliative Care, Report of a WHO Expert Committee . Geneva: World Health Organization; 1990.