Journal of palliative medicine
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Improvements in end-of-life care will require an active program of research, and this research will need to involve patients in hospice. However, it is not known whether hospices are prepared to participate in research, nor is it known what barriers may prevent hospices from becoming involved in research. ⋯ Of 88 hospices identified, 17 (19%) reported that they had participated in research in the past year. Hospices that participated in research were more likely to be urban, affiliated with an academic institution, and were more likely to have an inpatient unit. Hospices cited several barriers to research participation, including time commitments, staffing resources, ethical concerns, and burdens to patients and families. The most important concern was lack of staffing resources. Hospices indicated that they would be most willing to support research regarding pain management and timing of referral to hospice.
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To elucidate which types of palliative sedation therapy are preferred by the Japanese general population, what factors influence these preferences, and how the general population thinks clinicians should inform patients about sedation therapy. ⋯ The Japanese general population preferred intermittent deep or mild sedation to continuous deep sedation in alleviation of intractable and refractory distress. Many required explicit information about the serious consequences of sedation and wanted physicians to respect their wishes. We recommend that clinicians recognize the importance of both symptom alleviation and maintenance of intellectual activities, and to facilitate direct patient involvement in the decision-making process.