Journal of palliative medicine
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The goal of good palliative care is to relieve suffering and to improve quality of life. However, it is clear that access to palliative care is inconsistent. ⋯ This paper discusses six ethical aspects of end-of-life research that investigators and clinicians should consider in designing and conducting palliative care research. These include: (1) whether a study is research or quality improvement; (2) the study's potential benefits to future patients; (3) the study's potential benefits to subjects; (4) the study's risks to subjects; (5) subjects' decision-making capacity; and (6) the voluntariness of subjects' choices to participate in research.
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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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Whether patient suffering is caused by physical symptoms, unwanted medical intervention, or spiritual crisis, the common pathway to relief is through a provider who is able to elicit these concerns and is equipped to help the patient and family address them. This paper reviews the current state of knowledge in communication at the end of life, organized according to a framework of information gathering, information giving, and relationship building; and then focuses on interventions to enhance communication among patients, providers, and families. Several observations emerge from the existing literature. ⋯ Finally, huge gaps remain in our current knowledge, particularly with regard to understanding the relationship between communication style and outcomes. These findings suggest several recommendations. We should create larger and more diverse datasets; improve upon the analysis of recorded communication data; increase our knowledge about patient preferences for information; establish a stronger link between specific communication behaviors and outcomes; and identify more efficient ways to teach providers communication skills.
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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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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.