Context:

The “end-of-life” refers to a prolonged, difficult period for patients and caregivers. Nine-tenths of Medicare-insured elderly live with a serious, chronic condition before death. Due to our aging population, Americans will increasingly face such challenges.

Objectives:

Focusing on the outcomes patient and family satisfaction; pain, dyspnea, depression and anxiety and behavioral problems in dementia; continuity; caregiving burden other than bereavement; and advance care planning, we conducted a systematic review to evaluate the following: 1) The scope of the end-of-life population. 2) Outcome variables that are valid indicators of the quality of the end-of-life experience for the dying person and surviving loved ones. 3) Patient, family, and healthcare system associated with better or worse outcomes at end-of-life. 4) Processes and interventions associated with improved or worsened outcomes. 5) Future research directions for improving end-of-life care.

Data Sources:

MEDLINE®, Database of Reviews of Effects (DARE), the National Consensus Project for Quality Palliative Care, Toolkit of Instruments to Measure End-of-life Care (TIME), and citations recommended by an international expert panel.

Study Selection:

We focused on studies in the Western literature related to adult patient or caregiver end-of-life outcomes published between 1990 and April 2004, excluding studies of chemotherapy, radiotherapy, and similar technical care.

Data Extraction:

We identified a total of 24,423 citations from all sources; 5,216 went on to abstract review, of which 911 articles were considered for detailed review including 95 systematic reviews, 134 intervention, and 682 observational studies.

Data Synthesis:

Evidence is strongest in cancer, reflecting the degree to which palliative care has been integrated into oncology practice. Studies demonstrate strong associations between satisfaction and communication, pain control, practical support, and enhanced caregiving. We identified high-quality measures of quality of life, satisfaction, quality of care, and symptoms. Strong evidence undergirds cancer pain and depression treatment, and small studies suggest that opioids benefit dyspnea. Caregiving studies demonstrated inconsistent effects and focused on dementia. Strong evidence supports interventions to improve continuity in cancer and congestive heart failure (CHF), although CHF studies lack generalizability and palliative outcomes. Inconsistent evidence supports advance care planning, although studies often measure utilization rather than patient and family-centered outcomes.

Conclusions:

We identified a number of priorities including a need to (1) characterize the implications of alternative definitions of the “end-of-life”; (2) test measures in diverse settings and populations; (3) in studies of satisfaction, emphasize specific process, especially those less-studied (e.g., non-pain symptoms, spiritual support, and continuity); (4) address methodological challenges in measurement; (5) conduct studies of the epidemiology and clinical significance of symptoms in non-cancer conditions; (6) conduct larger studies of interventions for dyspnea; (7) conduct studies of short- as well as long-term treatment of depression; (8) conduct studies of caregiving in populations other than cancer and dementia; (9) evaluate economic and social dimensions of caregiving; (10) in continuity research, emphasize common settings (e.g., ambulatory care) and studies of nursing home-hospital continuity and involving multiple providers; and (11) in studies of continuity in CHF, incorporate palliative domains and ensure that studies are generalizable to the sickest patients.

Contents

• Preface
• 1. Introduction
  • Background and Context
  • Framework for the Systematic Review
  • Summary
• 2. Methods
  • Task Order Questions
  • Overview
  • Technical Expert Panel—Scope and Approach to the Report
  • Analytic Framework
  • Evidence Sources and Searches
  • Title Screening, Abstract Review, and Selection of Individual Studies
  • Procedures to Reduce Bias, Enhance Consistency, and Check Accuracy
  • Summarizing the Evidence (Key Questions 1–3)
  • Review of Articles Relevant to the Scope of “End of Life”
• 3. Results
  • Results of the Literature Search
  • A. Key Question 1a. What individual outcome measures are most strongly associated with overall satisfaction with end-of-life care?
  • B. Key Question 1b. What is the reliability and validity of specific instruments for measuring quality of life or quality of care at end of life?
  • Literature Review of Measures
  • Multidimensional Measures: Quality of Life, Quality of Care and Satisfaction
  • Measures Related to Other Specific Domains
  • C. Key Questions 2 and 3
  • 2. What patient, family, and healthcare system factors are associated with better or worse outcomes at end of life?
  • 3. What processes and interventions are associated with improved or worsened outcomes?
  • Pain
  • Dyspnea
  • Depression and Anxiety
  • Behavioral Issues in Dementia
  • Observational Studies and Symptoms
  • D. Key Questions 2 and 3
  • 2. What patient, family, and healthcare system factors are associated with better or worse outcomes at end of life?
  • 3. What processes and interventions are associated with improved or worsened outcomes?
  • Systematic Reviews and Caregiver Burden
  • Additional Interventional Studies and Caregiver Burden
  • Observational Studies and Caregiver Burden
  • E. Key Question 2 and 3
  • 2. What patient, family, and healthcare system factors are associated with better or worse outcomes at end of life?
  • 3. What processes and interventions are associated with improved or worsened outcomes?
  • Introduction
  • Additional Interventional Studies and Continuity
  • Specific populations
  • Additional Interventional Studies and Continuity in CHF
  • F. Key Questions 2 and 3
  • 2. What patient, family, and healthcare system factors are associated with better or worse outcomes at end of life?
  • 3. What processes and interventions are associated with improved or worsened outcomes?
  • G. Summary regarding outcome variations among populations (by patient, family, and health system characteristics)
  • H. Summary regarding the effectiveness of interventions
  • Pain, Depression and Anxiety, and Behavioral Symptoms in Dementia
• 4. Research Recommendations
  • Overview
  • Limitations
  • Definition of the “End-of-Life” Population Needed
• Reference List
• Appendixes
  • Appendix A. The Scope of the “End of Life”
  • Appendix B. Search Strategies
  • Appendix C. Health Canada Reports
  • Appendix D
  • Appendix E. Intervention Studies Evidence Tables
  • Appendix F. TEP and Peer Reviewers
  • Appendix G. Cambridge Ballot
  • Appendix H
  • Appendix I. Bibliography of Excluded Abstracts
  • Appendix J. Bibliography of Excluded Articles
  • Appendix K. REVIEWER COMMENTS
  • Appendix L. Observational Studies Evidence Tables
  • Appendix M. Included Studies

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Reviewer: Ronda Hughes, PhD, MHS, RN. Programmer/Analyst: Lara Hilton, BA. Database Manager: Shannon Rhodes, MFA. Research Assistant: Hsien Seow, BS. Staff Assistant: Cony Rolón, BA.

Prepared for: Agency for Healthcare Research and Quality, U.S. Department of Health and Human Services.¹ Contract No. 290-02-0003. Prepared by: Southern California Evidence-Based Practice Center, RAND Corporation, Santa Monica, CA.

Suggested citation:

Lorenz K, Lynn J, Morton SC, Dy S, Mularski R, Shugarman L, Sun V, Wilkinson A, Maglione M, Shekelle PG. End-of-Life Care and Outcomes. 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-E004-2. Rockville, MD: Agency for Healthcare Research and Quality. December 2004.

This report may be used, in whole or in part, as the basis for development of clinical practice guidelines and other quality enhancement tools, or a basis for reimbursement and coverage policies. AHRQ or U.S. Department of Health and Human Services endorsement of such derivative products may not be stated or implied.

AHRQ is the lead Federal agency charged with supporting research designed to improve the quality of health care, reduce its cost, address patient safety and medical errors, and broaden access to essential services. AHRQ sponsors and conducts research that provides evidence-based information on health care outcomes; quality; and cost, use, and access. The information helps health care decisionmakers—patients and clinicians, health system leaders, and policymakers—make more informed decisions and improve the quality of health care services.

The authors of this report are responsible for its content. Statements in the report should not be construed as endorsement by the Agency for Healthcare Research and Quality or the U.S. Department of Health and Human Services of a particular drug, device, test, treatment, or other clinical service.

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