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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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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Racial disparities, including decreased hospice utilization, lower quality symptom management, and poor-quality end-of-life care have been well documented in Black Americans. Improving health equity and access to high-quality serious illness care is a national palliative care (PC) priority. Accomplishing these goals requires clinician reflection, engagement, and large-scale change in clinical practice and health-related policies. In this article, we provide an overview of key concepts that underpin racism in health care, discuss common serious illness disparities in Black Americans, and propose steps to promote the delivery of antiracist PC.