Authors' 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.

Authors' results and conclusions: 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.

Authors' recommendations: 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.

Authors' methods: Systematic review

Project Status: Completed

URL for project: http://www.ahrq.gov/clinic/tp/eoltp.htm

Year Published: 2004

English language abstract: An English language summary is available

Publication Type: Not Assigned

Country: United States

Organisation Name: Agency for Healthcare Research and Quality

Contact Address: Center for Outcomes and Evidence Technology Assessment Program, 540 Gaither Road, Rockville, MD 20850, USA. Tel: +1 301 427 1610; Fax: +1 301 427 1639;

Contact Name: martin.erlichman@ahrq.hhs.gov

Contact Email: martin.erlichman@ahrq.hhs.gov

Copyright: Agency for Healthcare Research and Quality (AHRQ)