Voluntarily Stopping Eating and Drinking, and a Wife Who Calls It Suicide
Mr. T is 66 with limb-onset ALS diagnosed three years ago, now with dysarthria, hand weakness, and a forced vital capacity of 38% predicted; he uses nocturnal BiPAP. He is alert and oriented, scores 4 on the PHQ-9, and manages his own affairs. He tells you he intends to stop eating and drinking next month and wants the hospice team to "support me through it." His wife says, "That's suicide - I won't be part of it," while his daughter, an ICU nurse, supports him. He has a health care proxy naming his wife and a living will declining intubation, but nothing about voluntarily stopping eating and drinking (VSED). The ALS clinic asks whether hospice can accept him and what documentation is required. He has no pain, mild dyspnea on exertion, and no dysphagia yet.
1. What must you assess before accepting this as an informed, voluntary decision?
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Capacity, using the four-element standard: does he understand the diagnosis and prognosis; does he appreciate that stopping all oral intake will cause his death; can he reason about alternatives; and can he express a consistent choice? Document the assessment explicitly, and obtain a second clinical opinion or psychiatry input if there is any doubt.
Mood and treatable drivers. A PHQ-9 of 4 is reassuring but not sufficient - ask about hopelessness, anhedonia, and suicidal ideation directly, and ask whether he would feel differently if his dyspnea, insomnia, or fatigue were better controlled. Screen for untreated symptoms and for a sense of being a burden.
Voluntariness. Interview him alone. Ask what he would do if his symptoms improved, what he still hopes for, and whether anyone is pressuring him - including financial or caregiving pressure, or the opposite: feeling he must stay alive for his wife.
Informed consent about the process itself. He needs to know that he will stop all oral intake including medications; that thirst is manageable with mouth care; that he may become delirious and unable to reverse the decision; that death typically takes one to three weeks; and that he may change his mind at any point. Ask who he wants present.
Institutional and legal groundwork. Confirm your agency and state permit staff to provide comfort care during VSED, and identify an ethics consultant early - before the crisis, not during it.
2. Is VSED ethically and legally distinct from physician-assisted death, and can he be enrolled in hospice while pursuing it?
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Yes, they are distinct. VSED is the refusal of a medical intervention - nutrition and hydration - by a capacitated person. The right of a competent adult to refuse any treatment, including artificially provided food and fluids, is well established in U.S. law; it is not assisted suicide and not a crime in any state. Physician-assisted death involves a clinician prescribing a lethal medication at the patient's request and is lawful only in a minority of states under strict eligibility rules.
The distinction matters practically and morally. Your role is to respond to his decision and to provide comfort - mouth care, symptom management, presence - not to initiate, propose, or hasten the process. You do not offer VSED as an option to other patients. You also do not abandon him.
Hospice eligibility does not hinge on VSED. ALS with a forced vital capacity of 38% and progressive decline already supports a prognosis of six months or less. Document the terminal diagnosis and the goals of care.
Documentation should include: his own words describing the decision; the capacity assessment; the alternatives discussed and declined; the risks explained, including delirium; the family meeting; the ethics consultation; and a clear note that VSED is the patient's decision and that hospice is providing comfort care, not causing death.
If your agency declines to participate, the obligation is a warm handoff to an agency that will - not an abrupt discharge.
3. What do you say to his wife, and what safeguards does the plan require?
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Start with her, not with the law. Her statement is grief and moral distress, not obstruction. Name it: "It sounds as if this feels to you like he is killing himself, and that you would be helping." Then explore what she fears most - being blamed, being alone in the house, her faith, the judgment of relatives, or the memory of finding him.
Clarify the difference between letting the disease take its course with comfort care and actively ending his life, and state plainly that no one on the team will hasten his death.
Do not ask her to agree. Ask what she can do: be present, or not; manage mouth care, or let the daughter do it. Offer chaplaincy, social work, couples counseling, and her own therapist. Tell her she will be supported regardless of her choice.
Safeguards the plan needs:
- A documented backup decision-maker for when he loses capacity, since his wife's opposition makes her a conflicted proxy.
- An explicit discussion about what happens if he becomes delirious and asks for water - plan this in advance and write it down.
- Agreement that no one will call 911 or give food covertly, discussed openly rather than assumed.
- Anticipatory prescriptions for pain, dyspnea, agitation, and secretions, with mouth-care supplies at home.
- Ethics consultation and a clear escalation path.
- Early bereavement support for his wife, who is at elevated risk for complicated grief and for family rupture with her daughter.