The judicial decision to allow mechanical life support to be removed from the British infant, Charlie Gard, has been roundly condemned by some sources. The infant’s distraught mother lamented that the parents had been allowed “no control” over their child’s life and death. Demonstrators, calling themselves “Charlie’s army,” assembled near the courthouse crying “shame” at the court’s failure to sustain a preservable human life. Conservative commentators condemned the “unwarranted” governmental interference with parents’ child-rearing prerogatives. They wondered why the parents weren’t permitted to transport the infant, at their own expense, from London to New York to try an experimental medication being offered by a Columbia physician. Another conservative source accused the National Health Service of taking Charlie prisoner, contending that the British health service feared being shown up by American free enterprise medicine if Charlie were treated in New York.
Charlie Gard was born on August 4, 2016, suffering from a rare genetic disease called mitochondrial DNA depletion syndrome (MDDS). MDDS seriously affected Charlie’s brain and muscles, leaving him without ability to hear, see, cry, move his arms or legs, or breathe without a mechanical ventilator. On October 11, 2016, Charlie was admitted to Great Ormond Street Hospital (GOSH) where he was continuously treated until just before his death in a hospice in July 2017.
In early January 2017, the GOSH clinicians had been willing to import and administer an experimental drug (nucleoside powder) touted by a N.Y. physician, Dr. Michio Hirano. Nucleoside treatment had been used by Dr. Hirano for a different mitochondrial mutation (TK2), not MDDS. However, before nucleoside treatment could be initiated, Charlie experienced brain seizures causing even more brain damage – leaving no signs of upper brain activity necessary for responsiveness and interaction with an environment. GOSH’s staff then concluded that there was no meaningful chance that nucleoside treatment could help Charlie. In February 2017, GOSH applied for a judicial order declaring that withdrawal of the ventilator would be in Charlie’s best interests (to shorten the pain and suffering that Charlie was probably experiencing) and therefore would be lawful. Continue reading →
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 →
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 →
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 →
A stricken medical patient has a well-established right to reject life-extending medical interventions. A person afflicted with pulmonary disease is entitled to reject a respirator, a person with kidney dysfunction can reject dialysis, and a person with a swallowing disorder can reject artificial nutrition and hydration (ANH). State and federal courts uniformly invoke competent patients’ interests in self-determination and bodily integrity to uphold a patient’s prerogative to shape their own medical course. The patient’s right extends not just to intrusive machinery, but also to simplistic, non-burdensome medical intrusions like an I.V. tube or a blood transfusion.
Some patients facing fatal or seriously degenerative conditions seek to hasten their demise by voluntarily stopping eating and drinking (VSED) before the stage of decline when they are dependent on life-sustaining medical intervention. They see SED as a way to shorten their ordeal by precipitating death by dehydration within 14 days while receiving mild palliative intervention to foreclose distress before slipping into a terminal coma. The SED process entails days of lingering incapacity and is a distasteful prospect for some patients. But it is regarded by other patients as a relatively quick, peaceful, and humane way of ending a mortal struggle now deemed to be intolerably arduous.
Numerous medico-legal commentators, myself included, have asserted that a stricken patient has “a right” to VSED. These commentators associate a patient’s decision to cease nutrition and hydration with the established constitutional right to reject life-sustaining medical intervention. They note that the fasting person is invoking bodily integrity – precluding any feeding spoon from penetrating their mouth or nutritional tube from being inserted into their body – as well as autonomy in shaping a response to a serious affliction. They also observe that the proffered succor (in the form of forced feeding or artificial nutrition) demands medically skilled intervention generally subject to a competent patient’s control.
The formal legal authority is thin. Commentators point to several lower court decisions where judges refused to authorize medical override of a fasting patient. No high level judicial body has spoken to the precise issue. Continue reading →
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.
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).
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.)
France recently confronted its version of America’s 2005 Schiavo case (in which the Florida Supreme Court upheld a spouse’s determination to end life support to a permanently unconscious patient despite the patient’s parents’ objections). In 2014, France’s Conseil d’Etat ruled that artificial nutrition and hydration (ANH) could be withdrawn from a permanently vegetative patient based on oral statements that the patient had made, while competent, indicating unwillingness to be medically sustained in such a condition. The patient’s objecting parents then sought a declaration from the European Court of Human Rights (ECHR) that such termination of life support would violate the European Convention on Human Rights. On June 5, 2015, the ECHR rejected the objecting parents’ contention, finding that France’s approach met human rights standards both in the process and the criteria followed by medical personnel in deciding to end life support. Lambert v. France, #46043/14 (ECHR 2015).
Vincent Lambert, then 32 years old, was grievously injured in a 2008 traffic accident. He suffered massive brain trauma and was hospitalized for the next 7 years at Reims University Hospital. His precise medical status was initially uncertain. In July 2011, a medical evaluation found him to be “minimally conscious plus.” Over the next year and a half, he underwent 87 speech therapy sessions which failed to establish any code of communication between Mr. Lambert and his surroundings. In early 2013, the attending physician, Dr. Kariger, initiated a process to review Mr. Lambert’s condition and to determine whether the ANH sustaining Mr. Lambert should be withdrawn.
The process that followed was extensive. During 2013, Dr. Kariger consulted with 6 physicians concerning the patient’s mental status and held 2 family meetings at which Mr. Lambert’s wife, Rachel, his parents, and 8 siblings were present. In January 2014, Dr. Kariger announced his determination to end artificial nutrition and reduce hydration. Dr. Kariger’s written report explained that Mr. Lambert had become permanently unaware of his environment and, according to accounts of Mr. Lambert’s prior oral expressions, he would not wish to be medically sustained in such a debilitated condition. Five of the six medical consultants agreed, as did the patient’s wife and 6 of his 8 siblings.
Guest Post by Norman L. Cantor Professor of Law and Justice Nathan L. Jacobs Scholar Emeritus Rutgers School of Law – Newark
The first signs of my friend Gertie’s descent into dementia were mild — confusion about days of the week and memory loss about recent events. These were troubling but understandable phenomena in my then 84 year-old friend. Aging inevitably entails some cognitive decline. Over time, though, her symptoms of mental deterioration worsened — disinterest in pursuits like reading and listening to music that had once occupied and entertained her, forgetting not just long-time friends, but even her devoted husband who had died years earlier, and obsessive repetition of certain thoughts and phrases. Now 89, Gertie barely recognizes the devoted caregivers around her. She cannot recall her distant or recent past, she no longer knows who or where she is. Gertie remains physically tenacious, with no life-threatening maladies. While dependent on assistance for dressing, eating, ambulating, bathing, and toileting, Gertie may continue in her mentally detached and dysfunctional limbo for years more.
I am determined to avoid Gertie’s fate. So I am now contemplating how to respond if and when I am diagnosed with early Alzheimer’s. My prime object is to avoid the precipitous mental deterioration accompanying advanced Alzheimer’s or similar dementia. My aversion is not based on prospective emotional distress and suffering. While some people in sharp mental decline may experience anxiety, frustration, embarrassment, confusion, or agitation, some, like Gertie, seem placid and indifferent to their debilitation. My aversion is grounded rather in my abhorrence of reduced mental function to a degree I deem intolerably demeaning. Such a status is unacceptable to me whether or not I would experience distress in a future demented state.
Keep in mind that I spent my work career as an academic. My personal satisfaction and self-image have flowed largely from intellectual functions like observation, reflection, and analysis. Inability to understand and process information is, for me, an intolerably undignified status. This preoccupation with future mental dysfunction reflects unwillingness to soil the lifetime image to be left with my survivors. I care mightily about posthumous recollections of my personality and I seek to shape my life trajectory (including a dying process) in a way that preserves a modicum of dignity. Continue reading →