Journal of palliative medicine
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A 1997 Institute of Medicine report cited growing public concern about the quality of care in the U. S. health care system for persons at the end of life. The National Institute of Nursing Research (NINR), the lead Institute at the National Institutes of Health for end-of-life research, has conducted a number of public forums to gather information and to assist in identifying research priorities. ⋯ In December 2004, NINR and the NIH Office of Medical Applications of Research, along with many co-sponsors, held an interdisciplinary State-of-the-Science Conference on Improving End-of-Life Care. The conference panel identified many gaps in our current state of knowledge and provided suggestions for future research directions. This supplement presents papers from a distinguished group of scientists with a wide range of backgrounds who participated in this state-of-the-science conference.
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Medical care of patients with life limiting illness remains fraught with serious deficiencies, including inadequate advance care planning, delayed hospice referral, and continued delivery of aggressive treatment that is overtly counter to patients' preferences. ⋯ We argue that these barriers must be overcome before deficiencies in end-of-life care can be fully ameliorated.
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Hospital-based interdisciplinary palliative care teams (PCTs) are increasingly being established to meet the growing demand for high quality care for patients with life-limiting illnesses in which the goal is comfort rather than cure. Two recent studies suggest that PCTs teams are highly effective in influencing care of patients within large academic medical centers. The current study examines whether the previously demonstrated success of palliative care teams within subspecialty academic health centers could be replicated in an urban Veterans Affairs medical center (VAMC). ⋯ Overall, most recommendations were implemented by the referring physicians. This finding is consistent with several prior studies demonstrating that PCTs in acute care can and do influence processes of care for hospitalized patients. Well-designed observational studies and randomized controlled trials of specific palliative care interventions and their effect on patient, family, and health care system outcomes are needed.
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Programs that provide palliative care to individuals with dementia, which is a progressive terminal illness, are likely to encounter different issues (e.g., management of problem behaviors, caregiver strain extending over years) from those typically addressed by hospice programs. Little research is available on palliative care for individuals with dementia who live in the community. ⋯ Findings suggest that effective palliative care programs for patients with dementia need to understand and address the various sources and types of caregiver strain; provide adequate support to caregivers for the management of problem behaviors; provide counseling to help cope with the emotional reactions to the cognitive and behavioral changes associated with dementia progression; facilitate communication with the health care team; and broker access to community and other resources for assistance with functional limitations. Further research examining changes in strain over time will provide useful insights on the delivery of care and services for patients with dementia and their families in a palliative care framework.