Journal of palliative medicine
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Background: The key to high-quality care at the end of life is goal-concordant care, defined as care that is consistent with patient wishes. Objectives: To characterize decedent wishes for care at the end of life and to examine next of kin narratives of their loved ones' perceptions of whether wishes were honored. Design: Mortality follow-back survey and in-depth interviews. ⋯ Results: Approximately 10% of next of kin who reported on the survey that the decedent had specific wishes for medical care at the end of life also reported that the decedent received care that went against their wishes in the last month of life. The main theme of the in-depth interviews with next of kin who reported care that went against wishes was that discordant care was inconsistent with wishes for comfort-focused care and a lack of symptom palliation. Conclusions: Despite decades of work to improve quality of end-of-life care, poor pain and symptom management that result in lack of comfort remain the main reason that next of kin state wishes were not honored.
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Background: Individuals with cystic fibrosis (CF) experience symptoms affecting quality of life and may benefit from palliative care (PC). Objectives: To present results of content analysis from open-ended survey questions assessing knowledge and experiences with PC among CF stakeholders. Design, Setting, Subjects: Online surveys were sent to CF stakeholders through CF-specific listservs predominantly in the United States. ⋯ Some believed PC and lung transplant were mutually exclusive. Conclusion: Respondents felt PC is underutilized for CF, and that people with CF may miss out on the benefits of PC. Among stakeholders, respondents felt people with CF would benefit from access to primary and secondary PC services.
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Background: With support from the Radcliffe Institute for Advanced Study at Harvard University, we convened researchers representing palliative care, psychosocial oncology, spiritual care, oncology, and psychedelic-assisted therapies. We aimed to define priorities and envision an agenda for future research on psychedelic-assisted therapies in patients with serious illness. Over two days in January 2020, participants engaged in an iterative series of reflective exercises that elicited their attitude and perspectives on scientific opportunities for this research. ⋯ Additionally, participants suggested epistemological limitations of the medical model to understand the potential value and therapeutic use of psychedelics. Conclusions: Medicine and society are witnessing a resurgence of interest in the effects and applications of psychedelic-assisted therapies in a wide range of settings. This article suggests key opportunities for research in psychedelic-assisted therapies for those affected by serious illness.
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Background: Community-based residential settings (e.g., assisted living facilities and retirement communities), are increasing, where vulnerable older adults are living as they age and die. Despite prevalent serious illness, functional impairment, and dementia among residents, the mix and types of built-in services available are not known. Objective: To classify older adults in community-based residential settings by the types of services available and examine associations between service availability and hospice use and location of death. ⋯ Of the 51.8% of older adults residing in settings without clinical services, more than half died at home and fewer than half died with hospice. Conclusions: The majority of older adults who die in community-based residential settings do not have access to built-in clinical services. Palliative care training for staff in these settings may be warranted, given variable rates of hospice use and high rates of home death.
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Background: To allay uneasiness among clinicians and institutional review board members about pediatric palliative care research and to yield new knowledge relevant to study methods, documenting burdens and benefits of this research on children and their families is essential. Design: In a grounded theory study with three data points (T1, T2, and T3), we evaluated benefits and burdens of family caregiver participation at T3. English-speaking caregivers participating in palliative or end-of-life decisions for their child with incurable cancer or their seriously ill child in the intensive care unit participated. ⋯ Some acknowledged that answering the questions could evoke sad memories, but highlighted benefits for self and others. Attrition somewhat tempers the emphasis on benefits. Documenting perceived benefits and burdens in a standardized manner may accurately convey impact of study participation and yield new knowledge.