H042 Starting the conversation: voluntary stopping of eating and drinking in Huntington’s disease

<h3>Background</h3> Although Voluntary Stopping of Eating and Drinking (VSED) was first described in the medical literature in 1987, VSED in Huntington’s disease (HD) has not been discussed. Defined as ‘an action by a competent, capacitated person, who voluntarily and deliberately chooses to stop eating and drinking with the primary intention of hastening death…’, its ethical, legal, and social acceptability are not uniformly agreed-upon. <h3>Case histories</h3> The cases of three patients who chose VSED will be presented. Two were female, two were married and lived at home during the event, all were in their 50s and had had symptomatic HD for about 10 years but were still ambulatory and able to speak intelligibly. One stopped eating and drinking, one stopped eating but continued to drink fluids, and one simply stated a plan to eat/drink specific small amounts of food. The time to death ranged from 2 weeks to over a year. <h3>Conclusions</h3> Variants of VSED were selected by a small number of midstage HD patients as a means to hasten death. Physicians involved with VSED patients need to understand relevant local laws, the potential complexities of the process, and to be comfortable with their own opinions about it. Consultation with colleagues in psychiatry, palliative care, hospice, and/or ethics is recommended. Demographic features of HD patients choosing VSED differ in important ways from the more ‘typical’ cancer or chronically ill patient.

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Published
2024-09-01
DOI
https://doi.org/10.1136/jnnp-2024-ehdn.272
Primary Topic
Genetic Neurodegenerative Diseases
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article
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article

H042 Starting the conversation: voluntary stopping of eating and drinking in Huntington’s disease

MARTHA A. NANCE
Genetic Neurodegenerative Diseases
article

H042 Starting the conversation: voluntary stopping of eating and drinking in Huntington’s disease

MARTHA A. NANCE
article en

Abstract

<h3>Background</h3> Although Voluntary Stopping of Eating and Drinking (VSED) was first described in the medical literature in 1987, VSED in Huntington’s disease (HD) has not been discussed. Defined as ‘an action by a competent, capacitated person, who voluntarily and deliberately chooses to stop eating and drinking with the primary intention of hastening death…’, its ethical, legal, and social acceptability are not uniformly agreed-upon. <h3>Case histories</h3> The cases of three patients who chose VSED will be presented. Two were female, two were married and lived at home during the event, all were in their 50s and had had symptomatic HD for about 10 years but were still ambulatory and able to speak intelligibly. One stopped eating and drinking, one stopped eating but continued to drink fluids, and one simply stated a plan to eat/drink specific small amounts of food. The time to death ranged from 2 weeks to over a year. <h3>Conclusions</h3> Variants of VSED were selected by a small number of midstage HD patients as a means to hasten death. Physicians involved with VSED patients need to understand relevant local laws, the potential complexities of the process, and to be comfortable with their own opinions about it. Consultation with colleagues in psychiatry, palliative care, hospice, and/or ethics is recommended. Demographic features of HD patients choosing VSED differ in important ways from the more ‘typical’ cancer or chronically ill patient.

Hennepin County (US), Hennepin Healthcare Research Institute (US)
Zero hunger
Openalex Percentile: Top 85%
Genetic Neurodegenerative Diseases
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