On this page I collect some key resources on VSED. Because of copyright limitations I cannot post many good resources. So, this page is materially underinclusive. But I am happy to help direct researchers to good sources and materials.
While MAID is not an exit option for dementia, VSED may be. Consequently, some academics and advocates have been working on analysis and tools to clarify this exit option. The most recent example is from End of Life Choices New York: the "Advanced Directive for Receiving Oral Foods and Fluids in Dementia."
In collaboration with attorneys, palliative care clinicians and others, End of Life Choices New York has developed an advance directive specifically designed for those with an early stage of Alzheimer's or another dementing disease, or for those with a significant family history of dementia and fears of developing such a disease in the near future. NPR and Kaiser Health News nicely covered the new advance directive. End of Life Washington developed a similar tool "My Instructions for Oral Feeding and Drinking."
4. Articles by Professor Pope
Whether, Whem and How to Honor Advance VSED Requests for End-Stage Dementia Patients, 19(1) AMERICAN JOURNAL OF BIOETHICS (forthcoming 2019).
Voluntarily Stopping Eating and Drinking Is Legal—and Ethical—for Terminally Ill Patients Looking to Hasten Death, ASCO POST (June 25, 2018).
Voluntarily Stopping Eating and Drinking: Clinical, Psychiatric, Ethical and Legal Aspects, 178 JAMA INTERNAL MEDICINE 123-127 (2018) (with Timothy Quill, Linda Ganzini, Bob Truog).
Voluntarily Stopping Eating and Drinking (VSED) to Hasten Death: May Clinicians Legally Support Patients to VSED? 15 BMC MEDICINE 187 (Oct. 2017).
Voluntarily Stopping Eating and Drinking, 6(2) NARRATIVE INQUIRY IN BIOETHICS 75-126 (2016) (symposium editor).
Prospective Autonomy and Dementia: Ulysses Contracts for VSED, 12(3) JOURNAL OF BIOETHICAL INQUIRY 389-394 (2015).
Legal Briefing: Voluntarily Stopping Eating and Drinking, 25(1) JOURNAL OF CLINICAL ETHICS 68-80 (2014) (with Amanda West).
Voluntarily Stopping Eating and Drinking: A Legal Treatment Option at the End of Life, 17(2) WIDENER LAW REVIEW 363-428 (2011) (with Lindsey Anderson).
Through keynote addresses and panel discussions by clinicians, lawyers, ethicists, religious leaders, institutional administrators, and experienced family members, participants engaged in a wide range of challenging medical, legal, ethical, and caregiving issues about VSED:
Clinical findings: comfort and distress, duration, palliative supplements
Who uses VSED, for what reasons, in what circumstances
Narrative cases and family experiences
Legal questions: common law standing, statutory and regulatory inhibitions, permissible involvement of caregivers
Ethical questions: status of VSED re ‘suicide'; comparison with physician aid-in-dying and refusal of medically delivered nutrition & hydration; assistance from proxy decision makers
Religious and cultural perspectives
Dementia care: decision capacity, role of proxies, VSED by advance directive
Hospice and palliative care: normative-cultural compatibility, use in non-terminal situations
Institutional contexts: nursing home practice, abuse regulations, pre-admission understandings