By Norman L. Cantor
The scourge of Alzheimer’s is daunting. For me, the specter of being mired in progressively degenerative dementia is an intolerably degrading prospect. One avoidance tactic — suicide while still competent — risks a premature demise while still enjoying a tolerable lifestyle.
The question arises whether an alternative tactic — an advance directive declining all life-sustaining intervention once a certain point of debilitation is reached — might be preferable as a device to avert a prolonged, unwanted limbo.
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. Continue reading
by Norman L. Cantor
In the early days of living wills — the 1970’s and 1980’s – a major objective was to avoid being maintained on burdensome medical machinery in a highly debilitated status at the end stage of a fatal affliction. The contemporaneous legislation endorsing advance directives was typically geared to “terminal illness” (meaning likely death within 6 months). The distasteful specter was a moribund patient tethered to burdensome interventions like a respirator or a dialysis machine despite an unavoidable, looming demise. A common short-form living will rejected life support that “only prolongs the dying process” for a patient in “a terminal condition.”[i]
Another specter was being medically sustained in an utterly dismal quality of life – such as permanent unconsciousness without awareness or interaction with one’s environment. The contemporaneous legislation explicitly authorized advance directives seeking to avoid medical maintenance in a permanently vegetative state. And several landmark cases authorizing surrogate end-of-life determinations involved permanently unconscious patients. See Quinlan (N.J. 1976); Brophy, (Mass. 1986); Browning (Fla. 1990); Schiavo (Fla. 2005).
With the increasing prevalence of Alzheimer’s disease and similar degenerative dementias, the focus of advance directives has changed for some people. The primary specter is neither an unavoidable looming demise nor the insensate limbo of permanent unconsciousness. Rather, the emerging concern is protracted maintenance during progressively increasing cognitive dysfunction and helplessness. For some, being mired in a demented state is an intolerably degrading prospect well before the advanced stage when the person no longer recognizes loved ones and is totally uncomprehending.
For people like me who see even moderate dementia as an intolerably demeaning status staining their life image, their advance directive may seek to facilitate death by declining even simplistic medical interventions like antibiotics. Our hope is that death will soon ensue when an infection is left untreated or when artificial nutrition and hydration is withheld in the face of an eating disorder. Continue reading
by Norman L. Cantor
The right of a grievously stricken, competent patient to hasten death by ceasing eating and drinking is increasingly recognized. In the typical scenario, a person afflicted with a serious degenerative disease reaches a point where the immediate or prospective ordeal has become personally intolerable. The stricken person decides to shorten the ordeal by stopping eating and drinking, precipitating death by dehydration within 14 days. The dying process is not too arduous so long as there is a modicum of palliative care available – emotional support, lip and mouth care, and provision of a sedative if patient agitation or disorientation ensues.
A further question is whether a person can dictate a similar fatal course for his or her post-competence self by advance instruction to an agent. The instruction would be that — once a pre-defined point of dementia has been reached — either no food or drink should be offered to the incompetent patient or no manual assistance should be provided where the patient is not self-feeding. This post-competence SED tactic appeals to persons who view the prospective demented status as intolerably demeaning and wish to hasten their demise upon reaching that state. The legal claim would be that if a competent patient has a right to SED, the right ought to subsist post-competence when exercised by clear advance instruction. According to this claim, just as an advance instruction to reject a respirator would be upheld as an exercise of prospective autonomy, so an instruction for cessation of nutrition should be respected.
A person who undertakes responsibility for a demented person normally has a fiduciary duty to promote the well-being, comfort, and dignity of the ward. A guardian who forgoes available care measures such as shelter, warmth, hygiene, and food is chargeable with unlawful neglect. Provision of food and assistance in eating are normally part of that fiduciary obligation. A legal exemption might apply, though, if the guardian – in discontinuing hand feeding pursuant to an advance instruction — is simply respecting the right of the ward to exercise prospective autonomy. The question becomes: Is the acknowledged right to SED exercisable by means of an advance instruction? Continue reading
by Norman L. Cantor
In 1976, the N.J. Supreme Court issued a remarkably insightful ruling regarding the legal status of a permanently unconscious patient. In re Quinlan served as a judicial beacon guiding development of death & dying jurisprudence. Its impact is reminiscent of the judicial role played by Brown v. Board of Education in public education.
To appreciate the wondrous nature of Quinlan, recall the setting and background of the case. In 1975, a 22 year-old woman, Karen Ann Quinlan, was lying unconscious in a N.J. hospital following 2 anoxic episodes caused by toxic ingestions. She was sustained by a mechanical respirator and a naso-gastric tube. The diagnosis was PVS (permanent vegetative state) and the prognosis was that the patient would inevitably die within a year without regaining consciousness. Ms. Quinlan’s devoted parents reluctantly concluded that their daughter would not want to be maintained in her dismal, hopeless condition. Their priest and spiritual advisor told them that Catholic doctrine would permit withdrawal of “extraordinary” medical intervention such as the respirator. But when the parents asked the attending neurologist, Dr. Morse, to withdraw Karen’s respirator, he refused. He contended that professional medical standards precluded that course. The hospital concurred. Facing this resistance, Ms. Quinlan’s father turned to the N.J. chancery court seeking formal appointment as his daughter’s guardian with explicit authorization to direct withdrawal of the respirator.
A variety of interested parties responded to Mr. Quinlan’s chancery petition and they all opposed it. The county prosecutor asserted that pulling the respirator plug would constitute homicide and the state attorney general concurred. The attending physicians and the hospital contended that pulling the plug would violate their professional responsibilities to the patient. And a special guardian ad litem appointed to represent Karen Ann Quinlan insisted that it was in the helpless patient’s best interests to have her life prolonged. The lower court denied the father’s petition and Mr. Quinlan appealed.
On appeal, the N.J. Supreme Court in 1976 faced the unenviable task of shaping legal policy toward medical conduct likely to precipitate the death of a helpless patient. This was largely uncharted legal territory with no definitive precedents in state or federal courts. Common sense said that it can’t be a legal mandate to keep pumping fluids and gases into moribund patients until the last possible breath. Yet a chorus of naysayers proclaimed that pulling the respirator plug on Ms. Quinlan would be unlawful homicide, or a breach of professional medical responsibility to preserve patients’ lives, or a violation of a guardian’s fiduciary obligation to act in a ward’s best interests. And even if some circumstances might warrant removal of life-preserving medical interventions, hard questions existed about who is entitled to be the decision maker and what test or criteria govern such surrogate decision making.
by Norman L. Cantor
I am obsessed with avoiding severe dementia. As a person who has always valued intellectual function, the prospect of lingering in a dysfunctional cognitive state is distasteful — an intolerable indignity. For me, such mental debilitation soils the remembrances to be left with my survivors and undermines the life narrative as a vibrant, thinking, and articulate figure that I assiduously cultivated. (Burdening others is also a distasteful prospect, but it is the vision of intolerable indignity that drives my planning of how to respond to a diagnosis of progressive dementia such as Alzheimers).
My initial plan was to engineer my own demise while still competent to do so. My sketch of methodologies and my preferred course (stopping eating and drinking) appear at: http://blogs.law.harvard.edu/billofhealth/2015/04/16/my-plan-to-avoid-the-ravages-of-extreme-dementia/. The obvious hazard in that plan is cutting short a still vibrant and satisfactory existence.
An alternative strategy would be to allow myself to decline into incompetency, but beforehand to dictate, in an advance directive, rejection of future life-sustaining medical interventions. This strategy would probably work as applied to serious maladies such as kidney disease, lethal cancer, or congestive heart failure. The disturbing issue then becomes timing. The onset of such serious maladies is fortuitous and years of lingering in dementia might precede my demise.
A further alternative would be to seek to accelerate my post-competence demise by declining not only major medical interventions such as mechanical respirators or dialysis, but also more simplistic items like antibiotics, antiarrhythmics, and artificial nutrition and hydration. My envisioned scenario is that infection would occur early (via urinary tract, skin, or pneumonia) and that this condition, left untreated, would precipitate my death. (My advance instructions would allow palliative but not curative measures.)