Journal of palliative medicine
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Context: Huntington's disease (HD) is a neurodegenerative disorder characterized by mid-life onset, cognitive decline, and behavioral disturbance. Objective: We conducted a review of the end-of-life (EOL) experience of HD patients and their families. Methods: We searched 5 electronic databases. ⋯ Clinicians drive EOL discussions. Views on physician-assisted death (PAD) and euthanasia varied widely. Conclusions: Research is needed to further assess the PC needs of HD patients and to provide care recommendations.
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Background: Scant research has examined the relationship between family characteristics and end-of-life (EOL) outcomes despite the importance of family at the EOL. Objectives: This study examined factors associated with the size and composition of family relationships on multiple EOL hospitalizations. Design: Retrospective analysis of the Utah Population Database, a statewide population database using linked administrative records. ⋯ Conclusions: First-degree family characteristics vary at the EOL. EOL care utilization may be influenced by family characteristics-in particular, presence of a spouse. Future studies should explore how the quality of family networks, as well as extended family, impacts other EOL characteristics such as hospice and palliative care use to better understand the EOL care experience.
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This is the seventh entry in the Psychological Elements of Palliative Care (PEPC) series. Previous articles have focused on the psychological elements of the care we provide patients and the relationships we build with our referring clinician colleagues. In this entry, we focus on how the PEPC also impact clinician well being. ⋯ Such spaces vary in their configuration, but all share the opportunity to self-reflect and to experience emotional validation, normalization, and reality testing from peers or mentors. In mental health training, clinical supervision is one common format for creating such a space. While this can be replicated in the palliative care setting, other strategies include integrating a psychological orientation into interdisciplinary team meetings, creating peer support or process groups, and creating small groups within teams for longitudinal self-reflection.
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Objectives: To identify factors associated with palliative care services being busier during Covid-19. Methods: Cross-sectional online survey of UK palliative care services (April to July 2020) (CovPall). Ethical approval was received from King's College London Research Ethics committee (LRS-19/20-18541). ⋯ Increased business was associated with homecare services (odds ratio [OR] 1.93, 95% confidence interval [CI] 1.15-3.25), nursing care at home (OR 3.24, 95% CI 1.70-6.19), publicly managed services (OR 2.20, 95% CI 1.11-4.34), Covid-19 cases (OR 1.01, 95% CI 1.00-1.01), and staff shortages (OR 2.71, 95% CI 1.64-4.48). Conclusion: Services providing community care, and publicly managed services, may have been better able to respond to escalating needs during Covid-19. This has potential implications for both service delivery and funding models.
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Background: Unfacilitated writing activities, such as expressive writing, have not shown benefit in people with advanced cancer, but facilitated writing activities have yet to be fully explored. Objectives: To assess the feasibility and acceptability of facilitated writing activities determined by a writing coach in people with advanced incurable cancer. Design: This is a single-arm pilot study. ⋯ The majority of patients wanted the whole intervention continued. Conclusions: A writing coach using facilitated writing activities was feasible and acceptable in patients with advanced incurable cancer, but further studies are needed to assess impact. Clinical Trial Registration Number NCT 025 75898.