Journal of palliative medicine
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As background for a National Institutes of Health State of the Science Conference on End-of-Life-Care, we performed a systematic review of end-of-life care and outcomes. The systematic review was intended to evaluate the evidence in the field from the perspective of concerns important to patients, caregivers, and the health care system. ⋯ The review identified 24,423 total citations, of which 911 comprised the final set used for the evidence report. This very large, diverse body of literature reflects the tremendous growth of the field of end-of-life care over the last decade.
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This paper reviews quantitative evaluations of the efficacy of intervention programs designed to reduce the pain and suffering associated with bereavement. After identifying the psychological and physical health impacts of bereavement and outlining the prevalence of detrimental outcomes, we conclude that a minority of bereaved persons experience severe and sometimes lasting consequences, whereas the majority manage to overcome their grief across the course of time. We detail criteria for establishing the efficacy of bereavement intervention and examine the impact of intervention according to these stringent criteria. ⋯ Intervention soon after bereavement may interfere with "natural" grieving processes. Intervention is more effective for those with more complicated forms of grief. Finally, a research agenda is outlined that includes the use of rigorous design and methodological principles in both intervention programs themselves and in studies evaluating their efficacy; systematic investigation of "risk factors"; and comparison of relative effectiveness of different intervention programs (i.e., what works for whom).
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Informal family caregivers provide care in a variety of situations, including care for patients receiving active curative treatment for cancer and other life-threatening diseases, for Alzheimer's patients over the long trajectory of their disease, and for hospice patients who are near the end of life. Especially at the end of life, these caregivers are essential because they provide needed help with activities of daily living, medications, eating, transportation, and emotional support, as well as communicating with health care professionals about the patients' condition. As health care increasingly moves out of acute care settings and into homes, the role of the caregiver becomes more critical and the burden becomes heavier. ⋯ In addition, issues exist in adapting such interventions to work with culturally diverse populations. Sadly, there appears to be a limited number of investigators doing this important work. More research is needed to provide complete evidence on which to base practice and policy decisions.
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The field of palliative care in the United States developed in response to a public health crisis--namely, poor quality of life for patients with serious illness and their families--and most palliative care research to date has been appropriately focused on identifying patient and family needs and identifying gaps in the current health care system and in the education of our health care professionals. Research has also begun to develop and evaluate new interventions and systems to address these care gaps. Preliminary studies suggest modest benefits of an array of programs designed to deliver palliative care services. ⋯ Unfortunately, the validity and reliability of these findings are limited by important methodological weaknesses including small sample sizes, poorly described and nongeneralizable interventions, diverse and nonstandardized outcome measures, and poor study designs (i.e., lack of appropriate control groups, nonblinded designs). Comprehensive and rigorous research is needed to evaluate the effect of well-delineated and generalizable palliative care structures and processes on important clinical and use outcomes. Large multisite studies that have adequate power to detect meaningful differences in clinical and use outcomes, and that use well-defined and generalizable structures and evidence-based care processes, well-defined uniform outcome measures, and analyses that link the outcomes of interest to individual components of the interventions, are needed to guide further development of the field.
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End-of-life studies are likely to have missing data because sicker persons are less likely to provide information and because measurements cannot be made after death. Ignoring missing data may result in data that are too favorable, because the sickest persons are effectively dropped from the analysis. In a comparison of two groups, the group with the most deaths and missing data will tend to have the most favorable data, which is not desirable. ⋯ With and without the imputed data, there was never a significant difference between the treatment and control groups, but in two nonrandomized comparisons the method of handling the missing data made a substantive difference. These sensitivity analyses suggest that the main results were not sensitive to the death and missing data, but that some secondary analyses were sensitive to these problems. Similar approaches should be considered in other end-of-life studies.