Book Review: Phyllis Shacter’s “Choosing to Die” (A Story of Death by Voluntarily Stopping Eating and Drinking)

For some people, being mired in progressively degenerative dementia is an intolerably distasteful prospect.  Precipitous mental deterioration would, for them, indelibly soil the lifetime image to be left with survivors and would pose a repugnant physical and emotional burden upon caregivers.  They know that lingering in an utterly dysfunctional cognitive state can continue for many years.

One tactic to avoid prolonged dementia, after initial diagnosis, is to take steps to end one’s existence while still competent.  And one lawful method of self-arranged death is by voluntarily stopping eating and drinking (VSED).  Strict cessation of nutrition and hydration will typically precipitate death by dehydration within 10 to 14 days.  The patient will likely lapse into delirium or confusion after a number of days and remain semi-conscious or unconscious for the duration.

The VSED route is derided by some sources as a repulsive ordeal both for the patient and surrounding caregivers.  The detractors portray the process as both torturous and excessively undignified.  They envision death “by starvation” as entailing unavoidable suffering.  They perceive offensive indignity in the accompanying erosion of mental clarity (delirium) and in days of semi-conscious or unconscious lingering.  This liminal period is deemed demeaning to the patient and “a horrible vigil” for surrounding family watching the wasting patient die.

Phyllis Shacter, in her short book “Choosing to Die,” goes a long way toward dispelling this derogatory portrayal of VSED.   Choosing to Die (hereinafter CTD) is the chronicle of Phyllis’ husband Alan’s struggle, decline, and demise from the point when he is diagnosed with Alzheimer’s to the point a year and a half later when he expires.  Alan dies 9 and ½ days after voluntarily initiating the SED process.  Phyllis herself serves as devoted confidante, advisor, organizer, caregiver, agent, supporter, and advocate throughout the entire period.   Her graphic depiction of the process is illuminating from several perspectives.

Most importantly, CTD refutes the notion that VSED and death by dehydration must be a torturous or inhumane ordeal.  Phyllis recounts the sense of relief and peace that occupies her husband once he determines to use VSED as a means to preclude years of languishing in a drastically debilitated status.  She details the careful preparations made to avoid a painful or demeaning dying process.  These included hiring of health aides (for cleaning and repositioning the patient) and equipping them with palliative medications (analgesics, sedatives) and devices (moisturizers, suppositories and diapers) to keep the patient comfortable.  Regular consultation with a sympathetic physician ensured that palliative medications were available and appropriately used.

CTD, particularly through a daily log kept by a nursing aide, chronicles Phyllis’ husband’s experiences and transitions during the VSED process – from a placid and coherent t.v. watcher, to a delirious but sedated patient, to a  comatose figure on the edge of death.  The book does not hide the rigors and hurdles that may accompany a VSED process.  These include the anguishing deliberation about if and when to initiate the process, the screening of aides who have compunctions about the chosen course, coping with family members who oppose the course, and dealing with moments of confusion and agitation that may grip the patient.  In Phyllis’ case, she, as resolute agent for her husband, had to demonstrate to an investigator from the state adult protective services that the process was entirely voluntary and untainted by abuse or neglect.

As Dr. Timothy Quill remarks in his foreword to the book: VSED “is not a journey for the faint of heart.”  But CTD does a considerable service in documenting how the VSED option need not entail the demeaning ravages depicted by its detractors.  VSED offers one plausible strategy for those stricken with progressive dementia yet intent on avoiding years of helpless languishing in a highly debilitated state.  A terminal period of days in a stuporous condition may not be an ideal end-of-life scenario, but with proper palliation the VSED route provides a modicum of dignity sufficient for many people.  Based on her personal exposure, Phyllis Shacter is now dedicated to promoting knowledge about VSED as an end-of-life option.

I am still wrestling with an alternative option — allowing one’s mildly demented self to slip into incompetence, but beforehand leaving explicit instructions rejecting all prospective life-preserving medical interventions once a designated level of dementia has been reached. See https://blogs.harvard.edu/billofhealth/2017/04/20/changing-the-paradigm-of-advance-directives/ . The object of such advance instructions is to permit the stricken person’s early demise (probably from infection absent antibiotics) before enduring prolonged dementia.  That advance directive strategy appears subject to several uncertainties, most notably the willingness of surrogate decisionmakers and caregivers to permit the death of a non-suffering person who no longer recalls his or her strong aversion to the demented state at hand.  See https://blogs.law.harvard.edu/billofhealth/2015/12/02/is-it-immoral-for-me-to-dictate-an-accelerated-death-for-my-future-demented-self/.  Nonetheless, that strategy might emerge as a reasonable option for a person confronting a diagnosis of progressive dementia.