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End-of-Life Care & Outcomes

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November 2004

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Structured Abstract

Objectives: 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 health care 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.

Review Methods: We studied 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. We identified a total of 24,423 citations and reviewed 5,216 abstracts. Of these, 911 articles including 95 systematic reviews, 134 intervention, and 682 observational studies were reviewed in detail.

Results: Evidence is strongest in cancer, with palliative care integrated into oncology practice. Satisfaction is strongly associated with communication, pain control, practical support, and enhanced caregiving. We identified high-quality measures of quality of life, satisfaction, quality of care, and symptoms. Evidence supports treatment of cancer pain and depression, and small studies suggest that opioids benefit dyspnea. Effects focused on dementia are inconsistent. Evidence supports interventions to improve continuity in cancer and congestive heart failure (CHF).

Conclusions: We identified a number of priorities including a need to:

  • Characterize the implications of alternative definitions of the "end-of-life".
  • Test measures in diverse settings and populations.
  • Emphasize specific processes such as non-pain symptoms, spiritual support, and continuity.
  • Address methodological challenges in measurement.
  • Conduct studies on non-cancer conditions.
  • Conduct larger studies of interventions for dyspnea.
  • Conduct studies of short- and long-term treatment of depression.
  • Conduct studies of caregiving in populations with conditions other than cancer and dementia.
  • Evaluate economic and social dimensions of caregiving.
  • Emphasize common settings in studies of continuity involving multiple providers.
  • Incorporate palliative domains in studies of continuity in CHF, and ensure that studies are generalizable to the sickest patients.

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End-of-Life Care and Outcomes

Evidence-based Practice Center: Southern California Evidence-based Practice Center
Topic Nominators: National Institute of Nursing Research, National Cancer Institute, National Institute on Aging
Topic Funder: National Institutes of Health (NIH)

Current as of November 2004


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