Objective: We present two patients with atypical parkinsonism who chose to die by voluntarily stopping eating and drinking (VSED) to highlight the unique support and care needs associated with VSED and considerations for neurology teams.

Background: VSED is a choice to forgo food and liquids as a means of hastening death. VSED differs from medical assistance in dying (MAID) in the process itself and in that VSED is legal in all 50 states. However, many healthcare clinicians are not familiar with VSED and can struggle to know whether and how to support patients and families through the decision[1]. While there is a growing body of literature demonstrating the benefits of a palliative approach for neurodegenerative disease, particularly movement disorders, information on VSED and this patient population is extremely limited[2].

Method: We describe Mr. J, a 77-year-old man with a clinical diagnosis of corticobasal degeneration (CBD), who suffered from gait instability and executive dysfunction. He pursued VSED as he felt it would give him “death with dignity.” Our second case is a woman, Ms. B, who was diagnosed with multiple system atrophy (MSA) at the age of 58 and died at the age of 60. She had autonomic dysfunction, generalized weakness and postural instability, and chose VSED when she felt that her neurologist could no longer help with her worsening symptoms.

Results: Clinical descriptions of the cases; logistical, emotional and ethical considerations; and quotes are provided, illustrating the decision-making process faced by the patients, their care partners, and movement disorders clinical social worker. In both cases, the patients and families expressed wanting to have a sense of control over the death given their neurodegenerative condition as well as spoke highly of hospice’s support during the process. The patients and families took it upon themselves to research VSED, without direct assistance or involvement of their neurology team or other providers.

Conclusion: People impacted by Parkinson’s and atypical parkinsonism often raise fears and questions around prognosis and options for advanced disease state and end-of-life care. To support self-determination and wishes for quality of life in advance care planning with patients and families, there is a need for more information on VSED in movement disorders to better prepare neurology teams should this topic arise in the clinic setting.

References: [1] Quill TE, Ganzini L, Truog RD, Pope TM. Voluntarily Stopping Eating and Drinking Among Patients With Serious Advanced Illness—Clinical, Ethical, and Legal Aspects. JAMA Intern Med. 2018;178(1):123–127. doi:10.1001/jamainternmed.2017.6307 [2] Sokol LL, Young MJ, Paparian J, Kluger BM, Lum HD, Besbris J, Kramer NM, Lang AE, Espay AJ, Dubaz OM, Miyasaki JM, Matlock DD, Simuni T, Cerf M. Advance care planning in Parkinson’s disease: ethical challenges and future directions. NPJ Parkinsons Dis. 2019 Nov 22;5:24. doi: 10.1038/s41531-019-0098-0. PMID: 31799376; PMCID: PMC6874532.

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