Palliative Care in Huntington Disease: Personal Reflections and a Review of the Literature

Tarolli, Christopher G.; Chesire, Amy; Biglan, Kevin

doi:10.7916/d88057c7

Cited by 9 publications

(1 citation statement)

References 54 publications

(55 reference statements)

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“…36 As palliative care expands to include more neurodegenerative illnesses (MSA, PSP, CBS, Huntington's disease, and others), disease-specific tools may improve referrals to palliative care, as well as identify specific symptoms that can benefit from palliative care. [37][38][39][40][41][42] The palliative care workforce varies throughout the world. Even in the well-resourced United States, many palliative care programs struggle to manage cancer patient volumes.…”

Section: Discussionmentioning

confidence: 99%

Access and Attitudes Toward Palliative Care Among Movement Disorders Clinicians

et al. 2021

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Background Neuropalliative care is an emerging field for those with neurodegenerative illnesses, but access to neuropalliative care remains limited. Objective We sought to determine Movement Disorder Society (MDS) members' attitudes and access to palliative care. Methods A quantitative and qualitative survey instrument was developed by the MDS Palliative Care Task Force and e‐mailed to all members for completion. Descriptive statistics and qualitative analysis were triangulated. Results Of 6442 members contacted, 652 completed the survey. Completed surveys indicating country of the respondent overwhelmingly represented middle‐ and high‐income countries. Government‐funded homecare was available to 54% of respondents based on patient need, 25% limited access, and 21% during hospitalization or an acute defined event. Eighty‐nine percent worked in multidisciplinary teams. The majority endorsed trigger‐based referrals to palliative care (75.5%), while 24.5% indicated any time after diagnosis was appropriate. Although 66% referred patients to palliative care, 34% did not refer patients. Barriers were identified by 68% of respondents, the most significant being available workforce, financial support for palliative care, and perceived knowledge of palliative care physicians specific to movement disorders. Of 499 respondents indicating their training in palliative care or desire to learn these skills, 55% indicated a desire to gain more skills. Conclusions The majority of MDS member respondents endorsed a role for palliative care in movement disorders. Many members have palliative training or collaborate with palliative care physicians. Although significant barriers exist to access palliative care, the desire to gain more skills and education on palliative care is an opportunity for professional development within the MDS. © 2021 International Parkinson and Movement Disorder Society

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Section: Discussionmentioning

confidence: 99%

Access and Attitudes Toward Palliative Care Among Movement Disorders Clinicians

et al. 2021

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Primary Palliative Care in Huntington's Disease

Harrison

Morrissey

Dalrymple

et al. 2022

Movement Disord Clin Pract

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Background Palliative care practices, including communication about patient‐centered goals of care and advance care planning (ACP), have the potential to enhance care throughout the course of Huntington's disease (HD) and related disorders. The goal of our project was to develop a pilot program that integrates primary palliative care practices with interdisciplinary care for HD. Objectives (1) To train HD team members to facilitate goals of care and ACP conversations at all stages of HD; (2) To create materials for care planning in HD focused on patient‐centered goals of care and health‐related quality of life; and (3) To modify clinic workflow to include goals of care and ACP discussions. Methods We defined planning domains to expand care planning beyond end‐of‐life concerns. We created a patient and family guide to advance care planning in HD. We conducted VitalTalk communications training with the HD team. We modified the interdisciplinary clinic workflow to include ACP and developed an EMR template for documentation. Results After communication training, more team members felt well prepared to discuss serious news (12.5% to 50%) and manage difficult conversations (25% to 62.5%). The proportion of clinic visits including advance care planning discussions increased from 12.5% to 30.6% during the pilot phase. Conclusions Provision of primary palliative care for HD in an interdisciplinary clinic is feasible. Integration of palliative care practices into HD specialty care requires additional training and modification of clinic operations.

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