Overview 

To evaluate progress in the field of end-of-life

care and clarify research priorities, the National

Institute of Nursing Research (NINR), with the

Agency for Healthcare Research and Quality

(AHRQ), commissioned this evidence report as

the basis for a State-of-the-Science Conference in

December 2004. The need for such an

assessment is clear. More than 75 percent of

Americans now live past age 65, and 83 percent

of Americans now die while covered by

Medicare.1 In 2000, the average life expectancy

for Americans was 80 years for women and 74

years for men, compared to just 49 years in

1900.2 By 2050, life expectancy for women and

men will likely increase to 84 and 80,

respectively.3 A century ago, death came to most

Americans suddenly. Today, many Americans live

their last years with a chronic health condition,

and about 40 million people, 15 percent of the

adult U.S. population, are limited in activities

from such a condition.4, 5 Population aging

patterns suggest that in the coming decades,

larger numbers of Americans will be coping with

serious impairments late in life. For the relatively

healthy, a care system focused on curing acute

intermittent illness is adequate. For persons living

with advanced, chronic disease, neither

prevention nor cure are ordinarily possible.

Instead, patients and families struggling with

serious illness have other concerns, including

managing pain and other symptoms, coordinating

care among multiple providers and settings,

ensuring that treatments reflect preferences and

balance benefits and harms as well as medical

appropriateness, achieving empathic

communication and care, fostering well-being

(including spiritual concerns), maintaining

function, and practically supporting family and

caregivers through illness and bereavement.

Reporting the Evidence

This report addresses the following key

questions:

1. What outcome variables are valid

indicators of the quality of the end-of-life

experience for the dying person and for

the surviving loved ones?

a. What individual outcome measures are

most strongly associated with overall

satisfaction with end-of-life care? 

b. What is the reliability and validity of

specific instruments for measuring

quality of life or quality of care at the

end-of-life?

2. What patient, family, and health care

system factors are associated with better

or worse outcomes at end of life? 

a. What individual patient factors (e.g., age,

gender, race/ethnicity, underlying illness,

education, etc.) are associated with better

or worse outcomes at end of life?

b. What family factors (e.g., relationship to

patient, race/ethnicity, etc.) are associated

with better or worse outcomes at end of

life, including both outcomes reported

by the family and how the family affects

outcomes experienced by the patient? 

c. What health care system factors (e.g., site

of care, type of provider, support services,

etc.) are associated with better or worse

outcomes?

Evidence Report/Technology Assessment

Number 110

End-of-Life Care and Outcomes

Summary

Authors: Lorenz K, Lynn J, Morton SC, Dy S, Mularski R, Shugarman L, 

Sun V, Wilkinson AM, Maglione M, Shekelle PG

Agency for Healthcare Research and Quality

Advancing Excellence in Health Care • www.ahrq.gov

Agency for Healthcare Research and Quality Evidence-Based

Practice
2

3. What processes and interventions are associated with

improved or worsened outcomes?

a. What is the effectiveness of specific healthcare

interventions for improving specific outcomes in

patients at the end of life? 

b. Does effectiveness of specific interventions vary among

different populations?

4. What are future research directions for improving endof-life care?

Methodology

A multidisciplinary Technical Expert Panel (TEP) was

formed to assist the Southern California Evidence-based

Practice Center with its review and to guide the evidence

report. The TEP included leading scientists and clinicians in

nursing, gerontology, and palliative medicine, and others with a

broad knowledge of relevant research and policy issues in both

the United States and Europe. Research reviewers included an

oncology nurse, an intensivist (a physician who specializes in

the care of critically ill patients), a general internist, palliative

care physicians, and gerontologists. 

The sponsors decided to focus only on adults and identified

as a priority the evaluation of interventions related to managing

symptoms, enhancing communication, enhancing spirituality,

withdrawing technology, facilitating family caregiving, and

enhancing grief resolution. A decision was also made to focus

on three clinical common, representative conditions. Thus, as

an organizing principle, our analysis deliberately highlighted

evidence that illuminated the end of life as lived with cancer,

chronic heart failure, or dementia. Cancer patients experience

a somewhat predictable decline and are often served by hospice

in their final weeks. In contrast, patients with organ system

failure (e.g., congestive heart failure [CHF], chronic obstructive

pulmonary disease [COPD]) may experience stable but

impaired function punctuated by unpredictable, severe illness

and rather sudden death6-8 and are rarely served by hospice. In

further contrast, patients with dementia have prolonged

declines and often reside in nursing homes.9, 10 

TEP members were asked to prioritize potential topics for

the report based on relative importance at the end of life,

relationship to patient experience, feasibility, relevance to care

and policy, the availability of recent reviews on the topic, ability

of the topic to illuminate differences in the strength of research

in important clinical areas of palliative care, and modifiability

in clinical practice and policy.

11 With the TEP’s assistance, we

decided to focus on the following topics: 

• Satisfaction with care.

• As patient-centered concerns, the symptoms of pain,

dyspnea, depression, anxiety, and behavioral symptoms

associated with dementia. 

• As family and caregiver concerns, caregiver burden

excluding bereavement.

• As health system concerns, continuity of care. 

• As a concern that requires coordinated action among

patients, caregivers, and the healthcare system, advance

care planning (ACP). 

Literature Search and Review

A comprehensive search of the medical literature was

conducted to identify studies addressing the key questions. Staff

reviewed relevant articles, compiled tables of study

characteristics and results, appraised the methodological quality

of the controlled trials, and summarized results. 

Sources for our review included MEDLINE®, the Cochrane

Database of Reviews of Abstracts of Effects (DARE), the

National Consensus Project for Quality Palliative Care, and

several recent systematic reviews from both Health Canada and

National Institute for Clinical Excellence (NICE), United

Kingdom. We also used the 2000 Toolkit of Instruments to

Measure End of Life Care (TIME). Additional studies were

identified primarily through searches by U.S. National Library

of Medicine (NLM) staff, complemented by RAND library

searches. The searches were limited to published articles in the

English language, appearing in journals between the years 1990

through 2004, involving human subjects, and did not include

individual case reports. NLM staff conducted the first search of

PubMed® in April 2004.

At the title screening stage, citations that clearly met the

following criteria were excluded: studies that enrolled only a

pediatric population (age 18 years and under); those that were

case studies with fewer than 30 cases; those that did not

consider palliative care; those that enrolled a non-Western

population or were published in a non-English journal; reviews

that were not systematic; clinical trials of chemotherapy,

radiotherapy, stent, laser, endoscopy, or surgery (unless effects

of the interventions were considered beyond effects on the

primary disease process); descriptions of ethical, legal, or

regulatory issues; descriptions of research processes; editorials,

histories, personal narratives, and other descriptive non-clinical

articles; articles about professional education (unless clinical or

patient outcomes described); articles about organ

transplantation or donation; articles that presented data only

from prior to the mid 1980s; and studies in which the

outcomes were lab or radiological tests or other physiological

indicators. Approved titles moved on to an abstract screening

phase. 
The Report

Studies that satisfied the inclusion criteria are summarized in

the evidence tables. The evidence tables provide detailed

information about the study design, patient characteristics,

inclusion and exclusion criteria, interventions evaluated, and

the outcomes. The study sample size offers a measure of the

weight of the evidence. Within the report, summaries of

systematic reviews and intervention studies appear in an

abbreviated form in tables, using summary measures of the

main outcomes. Narrative text summarizes the findings and

provides qualitative analysis in response to the key questions for

each topic area. 

Peer Review 

Nine peer reviewers and TEP members reviewed our report.

We compiled the comments and made appropriate changes to

the report.

Findings

Literature Review

Of the 21,745 titles identified through literature searches,

5,563 were considered to be of possible relevance and subject to

abstract review. The literature search of the DARE abstracts

identified 92 titles; 62 were considered potentially relevant to

our topic areas and proceeded to abstract review. Another 71

were added to the library of abstracts from the NICE

guidelines, the Health Canada reports, the Toolkit of

Instruments to Measure End of Life Care, and the files of our

content experts. After eliminating duplicates and considering

only citations for which an abstract was available, a total of

5,165 abstracts were reviewed.

Responses to Questions

Key Question 1a. What individual outcome measures are

most strongly associated with overall satisfaction with end-oflife care? 

Key Question 1b. What is the reliability and validity of

specific instruments for measuring quality of life or quality of

care at the end of life?

We identified 10 systematic reviews, 12 intervention studies,

and 17 observational studies on the subject of end-of-life care

and patient or caregiver satisfaction. The preponderance of the

interventional and observational literature supports the

effectiveness of palliative care for improving both patient and

caregiver satisfaction. Subjective measures of the end-of-life care

experience include both satisfaction and quality-of-care

measures, and these tools overlap significantly. Satisfaction or

quality-of-care instruments that assess focused aspects of endof-life care have been most useful in demonstrating the effects

of interventions. Nonspecific satisfaction instruments or studies

that use measures not specifically adapted for or developed for

palliative care settings have often demonstrated ceiling effects.

Possibly for that reason, effects of interventions on satisfaction

have been somewhat inconsistent. 

Measures of satisfaction that are more specific and strongly

related to explicit intervention aims or processes (e.g.,

communication, pain control, practical support and enhanced

caregiving) have demonstrated greater sensitivity to change and

support a process-outcome relationship among these variables.

The relationship of other processes or attributes of care (e.g.,

treatment of symptoms other than pain, spiritual support,

continuity and coordination of care) to satisfaction is less

evident in the literature, although such relationships are

supported qualitatively. The ability to demonstrate

relationships between these aspects of care and satisfaction may

be partially related to challenges in defining spiritual support as

an intervention and measuring spiritual support and continuity

of care.

With regard to measures, our review identified one highquality, widely recognized resource (Toolkit of Instruments to

Measure End of Life Care) available on the World Wide Web

at www.chcr.brown.edu/pcoc/bibliographies.htm that

systematically reviewed and compiled recommended

instruments for end-of-life research up to the year 2000. We

updated and superceded this review, identifying 48 new

measures to supplement the 35 existing recommended

measures within the Toolkit. Measure development is most

advanced for cancer populations or mixed populations that

consist largely of cancer patients. The largest number of

measures evaluated quality of life, quality of care, and

symptoms. The literature documents many measurement

challenges including proxy respondents, timing of interviews,

and cognitive thresholds. 

Key Question 2a: What individual patient factors are

associated with better or worse outcomes at the end of life?

Key Question 3a: What is the effectiveness of specific

healthcare interventions for improving specific outcomes in

patients at the end of life?

As our outcomes, we considered the specific symptoms of

pain, dyspnea, depression and anxiety, and behavioral effects of

dementia, as well as caregiver burden. We reviewed 27

systematic reviews or meta-analyses because they addressed

selected symptoms of a palliative care population. Of those 27,

we identified 12 that addressed the project questions and met

implicit quality criteria. Two of the reviews included here

focused specifically on a cancer population, one focused on

patients with COPD, three focused on patients with dementia,

and another six did not limit their reviews to only one disease

3
4

cohort. We also reviewed 18 intervention studies and 14

observational studies that fulfilled our criteria.

The evidence base supporting the effectiveness of

interventions for cancer pain is quite strong, but additional

descriptive information about the experience of pain at the end

of life for conditions other than cancer is needed. Studies of

opioid treatment to relieve cancer pain were among the

strongest in terms of study design. Few complementary and

alternative medicine (CAM) interventions had a beneficial

impact on pain relief; acupuncture and massage produced

short-term pain relief in cancer patients. Studies of nonpharmacologic interventions—both CAM and mainstream—

are small and of varied quality. None of the review studies and

only four of the intervention studies included non-cancer

patients; none of these studies focused on a single disease. 

Several small, promising studies support the beneficial effect

of opioids on dyspnea; one meta-analysis and three intervention

studies reported mostly beneficial results for cancer and

COPD. Relatively few studies have described the experience of

dyspnea, despite the fact that dyspnea is a characteristic

symptom of several important end-of-life conditions (e.g.,

advanced cancer, COPD, CHF). The evidence from the

reviews and individual intervention studies does not strongly

support a role for oxygen therapy in the management of

dyspnea in cancer patients. Exercise interventions may have a

beneficial effect on those with severe COPD and CHF but

have not been tested in cancer patients. In small, short-term

studies, acupuncture, acupressure, and relaxation therapy

showed some clinical benefit. 

Effective interventions have targeted the pharmacologic

treatment of depression in cancer, but relatively few studies

have evaluated short-acting drugs (e.g., non-Selective Serotonin

Reuptake Inhibitors [SSRIs]) or the treatment of depression in

non-cancer conditions. We identified one extensive review of

the intervention literature regarding depression treatment in

cancer patients. Of the seven interventions considered by this

review, five focused on cancer patients. The other review and

two intervention studies focused on other disease cohorts (one

study focused specifically on depression in CHF patients, the

other on mixed disease). SSRI’s have been shown to be effective

in treating depression in palliative care populations. Behavioral

and CAM interventions have demonstrated mixed results.

Given the potential survival time after a diagnosis of

dementia, it is not clear what proportion of the populations in

studies evaluating interventions for behavioral problems in

dementia are clearly near the end of life. The literature

addresses many symptoms including aggressive/disruptive

behavior, agitation, wandering, and mood lability. These

studies suggest that a variety of non-pharmacologic therapies

may be effective. Pharmaceutical interventions were the subject

of only a few studies we identified and produced mixed results.

Because the literature on dementia is beset by many

methodological limitations, it is difficult to make definitive

statements about the best treatment for these patients.

With regard to burdens of caregiving other than

bereavement, we identified eight systematic reviews and metaanalyses that were relevant to family or informal caregiving.

Three dealt with outcomes of caregivers for patients with

dementia or other chronic illness, while five dealt with cancer

patients or other life-threatening illnesses. We identified 13

additional studies assessing interventions and caregiver burden

and 18 observational studies. Of these, seven studies evaluated

the effect of caregiving interventions on terminally ill patients,

nine studies investigated the impact of two critical transitions

faced by many caregivers (nursing home placement or the

death of the care recipient, and only two studies examined the

needs of terminally ill non-cancer patients and their caregivers.

In general, a variety of interventions were studied for a broad

range of caregivers (e.g., spouses, adult children, others),

primarily caregivers to dementia patients.12, 13 Palliative care

caregiver interventions were studied mostly in terminal cancer

patient caregivers,14-17 usually as a supplement to clinical

palliative care services being provided to the terminally ill

patient. Most studies, whether on dementia or end-of-life

caregiver interventions, focused on caregiver burden (objective

and subjective burden) as the main outcome measure, but

outcomes also included psychological distress (stress,

depression), anxiety, coping skills, life satisfaction, health related

quality of life, satisfaction with services or care, morale, rate of

patient home death, rates of patient institutionalization, and

costs. 

Two kinds of interventions were used to address caregiver

burden: individual and group interventions. The interventions

included education, counseling, support groups, home health,

hospice, or palliative care services to caregivers, singly, or in

some combination. For the most part, intervention studies

have reported inconsistent results. Larger treatment effects have

been found for individual interventions, although group

interventions predominate in the literature. Multi-component

interventions and some respite services have shown positive

(though small) impacts on caregiver burden. The

inconsistencies in the literature may be attributable to the

differences in the caregiver outcome measurement, research

design, and analytical methods used. 

With regard to continuity of care, we identified 9 systematic

reviews that potentially dealt with the subject of continuity. We

identified an additional 20 intervention studies and 17 relevant

observational studies that met our criteria. A preponderance of

evidence from systematic reviews and interventions support the

efficacy of interventions to improve continuity of palliative
cancer care. In addition, we found some lower quality evidence

that palliative HIV care could improve continuity of care.

Interventions embody a variety of successful approaches

including aspects of management, informational, and

interpersonal continuity as well as comprehensive integrated

care such as palliative care services. We found evidence for the

effectiveness of interventions targeting care at multiple levels—

provider, patient, provider/patient interface, and multiple

settings but particularly home and hospital. Our review is

limited in that it identified no evidence related to improving

continuity across multiple sites of care. 

Although we identified many effective interventions for

improving continuity in CHF care, few of these explicitly

addressed or reported patient-centered palliative outcomes (e.g.,

improvement in dyspnea, greater advance care planning,

caregiving impact). However, interventions that improved

continuity (often measured as hospital re-admission) share

features of successful interventions in general, including longer

intervention periods, coordination among providers, and

regular, structured home assessment. Many CHF interventions

specifically excluded patients who were ‘terminally ill,’ limiting

their generalizability. Most interventions have targeted readmission to the hospital or other kinds of high cost care, but

interventions are needed to understand how to improve

continuity in other settings as well.

The usual practice of advance directives and advance care

planning is supported by little reliable scientific evidence of

efficacy in improving outcomes. Improved communication

and planning has some tendency toward improved patient and

family satisfaction, and certainly anecdotes and small series

point to patient and family frustration and disappointment

with seriously flawed communication. Nevertheless, high

quality research designs have not often been applied to these

questions and, when applied, have shown quite modest effects,

even upon increasing the rate of making decisions in advance.

Whether improved advance care planning actually improves the

experience for patients and their families has only thin and

equivocal evidence. 

Recommendations and Future Research

Our literature review identified a very large and diverse body

of literature reflecting the tremendous growth and importance

of the field of end-of-life care over the last decade. This review

of the scientific evidence underlying key parts of the field of

end-of-life care illuminates strengths of the field as well as

opportunities for research. We identified evidence supporting

the association of satisfaction and quality of care with pain

management, communication, practical support and enhanced

caregiving. The literature review identified evidence to support

the effectiveness of interventions to improve satisfaction;

ameliorate cancer pain, relieve depression in cancer, nonpharmacologic interventions for behavioral problems in

dementia, and foster continuity in cancer and CHF care.

Evidence is strongest in cancer reflecting the degree to which

palliative care has already been integrated into the research

agenda and clinical practice of oncology. 

We also identified several opportunities for future research to

strengthen the evidence base for end-of-life care. Our

recommendations are as follows:

1. Research would benefit from characterizing the

implications of alternative conceptual and operational

definitions of the “end of life,” particularly for important

conditions. Efforts to define populations with specific

symptoms, informational and caregiver needs, and risks of

discontinuity are needed.

2. Further measure development should emphasize testing

the highest quality measures in important settings (e.g.,

hospital, nursing home, hospice, and ambulatory care).

These measures need to be evaluated in diverse

populations (e.g., racial/ethnic groups, non-cancer

conditions). 

3. Studies evaluating satisfaction should use specific measures

that reflect processes of care, and studies should examine

the relationship of satisfaction to less studied processes

such as non-pain symptoms, spiritual support, and

continuity.

4. Methodological challenges in measurement require

focused research. Strengthened research infrastructure

including collaborative networks should be considered.

5. Symptoms have been relatively well-characterized in

cancer, but high-quality studies of the incidence and

epidemiology of pain and other symptoms, the

relationship among symptoms, and the clinical

significance of symptoms are needed in non-cancer

conditions.

6. Small, high-quality studies suggest the effectiveness of

interventions to alleviate dyspnea. Larger studies of

interventions to alleviate dyspnea in cancer and noncancer conditions are needed.

7. Studies that evaluate short- as well as long-term treatment

of depression in palliative care settings are needed.

8. Research supports the effectiveness of interventions for

cancer and dementia caregiving. High-quality studies in

other populations are needed. These studies need to pay

special attention to methodologic issues such as careful,

specific measurement of outcome variables. 

9. The economic and social dimensions of caregiving need

additional research.

5
6

10. Substantial evidence supports interventions to improve

continuity between home and hospital. Continuity

research needs to look at other settings in which most

patients are cared for, e.g., ambulatory care. Additional

study of nursing home-hospital continuity and studies

that incorporate multiple settings and providers are

needed. 

11. Studies of continuity in CHF and other conditions should

incorporate the palliative domains described above (e.g.,

physical and psychological symptoms, caregiver burden,

advance care planning) and need to be more generalizable

to the sickest patients. Such studies need to include

patients with multiple comorbidities.

12. Rigorous research in advance care planning is needed to

understand how to best achieve patient and family goals

(as opposed to evaluating resource allocation), and such

research needs to address fundamental processes of care

planning.

Availability of the Full Report

The full evidence report from which this summary was taken

was prepared for the Agency for Healthcare Research and

Quality (AHRQ) by the Southern California Evidence-based

Practice Center, under Contract No. 290-02-0003. It is

expected to be available in December 2004. At that time,

printed copies may be obtained free of charge from the AHRQ

Publications Clearinghouse by calling 800-358-9295.

Requesters should ask for Evidence Report/Technology

Assessment No. 110, End-of-Life Care and Outcomes. In

addition, Internet users will be able to access the report and this

summary online through AHRQ’s Web site at www.ahrq.gov.

Suggested Citation

Lorenz K, Lynn J, Morton SC, Dy S, Mularski R,

Shugarman L, Sun V, Wilkinson AM, Maglione M, Shekelle

PG. End-of-Life Care and Outcomes. Summary, Evidence

Report/Technology Assessment No. 110. (Prepared by the

Southern California Evidence-based Practice Center, under

Contract No. 290-02-0003.) AHRQ Publication 

No. 05-E004-1. Rockville, MD: Agency for Healthcare

Research and Quality. December 2004.

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www.ahrq.gov

AHRQ Pub. No. 05-E004-1

December 2004

ISSN 1530-440X