Journal of palliative medicine
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Withdrawal of life-sustaining therapies is a common occurrence in the intensive care unit (ICU) setting and also occurs in other hospital settings, long-term care facilities, and even at home. Many studies have documented dramatic geographic variations in the prevalence of withdrawal of life-sustaining therapies, and some evidence suggests this variation may be driven more by physician attitudes and biases than by factors such as patient preferences or cultural differences. A number of studies of interventions in the ICU setting have provided some evidence that withdrawal of life-sustaining therapies is a process of care that can be improved. ⋯ Emerging research suggests more direct outcome measures may be useful, including family satisfaction with care and assessments of the quality of dying. Despite these relative limitations, these studies provide convincing evidence that withdrawal of life-sustaining therapy is a process of care that presents opportunities for quality improvement and that interventions are successful at improving this care. Further research is needed to identify and test the most appropriate and responsive outcome measures and to identify the most effective and cost-effective interventions.
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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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Advancing the science of end-of-life care requires a foundation of clear domains and variables to guide research and clinical practice. Palliative care and hospice programs have grown rapidly in recent years in response to an increasing proportion of the population living with chronic, debilitating, and life-threatening illness. ⋯ This paper reviews and compares several models that have proposed domains of end-of-life care and then applies the domains of the NCP Clinical Practice Guidelines as a framework to identify potential outcome variables for research. Having definitions and concepts shared by scientists in end-of-life care can advance the science and provide an evidence base for practice to improve quality care.
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In recent years, medical and allied health publications have begun to address various topics on spirituality. Scholars have posited numerous definitions of spirituality and wrestled with the notion of spiritual pain and suffering. Researchers have examined the relationship between spirituality and health and explored, among other topics, patients' perceptions of their spiritual needs, particularly at the end of life. ⋯ Researchers should also frame these issues from both faith-based and secular perspectives, differing professional viewpoints, and in diverse cultural settings. In addition, longitudinal studies will enable patients' changing experiences and needs to be assessed over time. Research addressing spiritual dimensions of personhood offers an opportunity to expand the horizons of contemporary palliative care, thereby decreasing suffering and enhancing the quality of time remaining to those who are nearing death.
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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.