“I’ve lived a wonderful life, but it must end sometime, and this is the right time for me. My decision is not about whether I’m going to die—we will all die sooner or later. My decision is about when and how. I don’t want to spoil the wonder of my life by dragging it out in decay… Help me find a way.”
—Virginia Eddy, courtesy of her son, Dr. David M. Eddy
A Controversial Choice
The quiet choice to die through the Voluntary Suspension of Eating and Drinking (VSED) is widely unheard of and rarely discussed. Many consider VSED a form of assisted suicide. To others, it is a sane and viable option at end of life to relieve inconsolable suffering.
The option of VSED carries few established guidelines. Hospices, continuing care facilities and end-of-life specialists struggle to develop and convey useful policies and procedures for VSED. Our health care system is reluctant to acknowledge VSED, let alone to develop and implement best practices.
The Confluence of Two Mighty Forces
The medical, ethical, and religious tension underlying VSED exists at the confluence of two mighty forces: the culmination of human suffering at end of life and the default setting of our modern healthcare system to prolong life at all costs.
What is an appropriate and compassionate response to someone considering VSED? What guidance would help navigate this polarized topic?
A Willful Decision and On-Going Debate
While little known to the general population, VSED is increasingly familiar to hospice patients. As end-of-life approaches, our need for food naturally diminishes. Distinct from this process, VSED is the willful choice of a determined patient.
It is “the action of a competent person who voluntarily and deliberately chooses to stop eating and drinking with the primary intention of hastening death because of the persistence of unacceptable suffering.” In essence VSED is death by fasting and while controversial, it is quietly gaining recognition and acceptance. My last Post, and next week’s as well, describes the process.
Who would choose VSED? Common denominators include unrelenting pain, a readiness to die, the desire to preserve control at the end of life, and the desire to die at home. A patient considering VSED needs to be resolute, well informed, and have the support of both their clinical team and an empathetic family or friend group.
An Individual Right… To Relieve Suffering
A growing number of clinicians, including the American Nurses Association, view the decision to hasten death in this manner as the ultimate individual right. It is a quiet choice of last resort.
VSED is legally and ethically permissible in all fifty states. It has been deemed consistent with a patient’s right to refuse or forego life sustaining treatments.
That said, it’s essential for the clinical team to determine that the patient considering VSED is not living with treatable depression.
Every clinician needs to decide how they’ll respond to a patient’s request to hasten death. Towards this end, medical societies and policymakers are being asked to establish clear institutional guidelines for VSED, and to promote critical and transparent discussion to inform both patients and healthcare professionals.
When asked, clinicians who value patient autonomy and shared decision making can include a description of VSED. Others who feel that VSED is morally or ethically wrong may transfer the care of such patients to colleagues who feel differently and could be of support.
Dr. Robert Macauley, ordained Episcopal minister, author and renowned Palliative Care ethicist writes:
“If the patient is resolute in proceeding with VSED, there is little that can—or should—be done to stop them. The palliative care clinician is better off respecting the decision and trusting that time will determine whether the patient is truly committed to VSED.”
A Dark Night of the Soul
In fact, many patients discuss giving up eating and drinking but choose otherwise. Just knowing that VSED exists and could be a viable exit strategy has seen many a patient through a dark night of the soul. For patients who choose to proceed with VSED and have merited their clinical team’s medical and psychosocial support, it is essential to stop ALL intake, once the fast has begun, including ice chips.
For steadfast patients, excellent oral care is paramount during the early stages of the fast when the patient is still awake and most likely thirsty. The frequent use of fresh oral swabs, lip balm, and rinsing of the mouth is encouraged to minimize discomfort. Be sure the patient spits out all fluids. As dehydration progresses, the patient will become sleepy and eventually slip into a coma leading to death. While keeping vigil, attentive physical care and pain management need to continue as death approaches.
What Would You Do?
If a patient’s Advance Directive instructs that they maintain the right to give up eating and drinking, yet the patient has lost decision-making capacity, their Agent still has the right and responsibility to advocate for this course of action on the patient’s behalf. In her practical guide, The Art of Dying Well, Katy Butler offers this cogent directive from her own Living Will:
“I wish to remove all barriers to a natural, peaceful, and timely death… If I’m eating, let me eat what I want, and don’t put me on “thickened liquids,” even if this increases my risk of pneumonia. Do not force or coax me to eat. Do not authorize a feeding tube for me, even on a trial basis. If one is inserted, please ask for its immediate removal.”
Noteworthy: VSED is increasingly utilized by a small percentage of hospice patients who have chosen Medical Aid in Dying (MAiD), but who for various reasons have not received final approval for their lethal prescriptions. Over 70 million adults live in the nine states (plus the District of Columbia) that have legalized MAiD.
Next Week: More on VSED
A Medical Advice Disclaimer
The content of this blog is for informational and educational purposes only. No aspect of its contents is intended to substitute for professional medical advice, consultation, diagnosis, or treatment. The author is a spiritual care provider, not a doctor. Always seek the advice of your physician or other qualified health care provider with questions you may have regarding a medical condition or treatment and before undertaking a new health care regimen. Never disregard professional medical advice or delay in seeking it based on something you have read here.
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Until next week, ‘Safe Journeys,
DSW