Changing the Paradigm of Advance Directives to Avoid Prolonged Dementia

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.

This new paradigm for an advance directive – avoidance of prolonged dementia – seeks to accomplish the demise of persons who, without such a directive, would surely be medically sustained.  For a dignity-focused advance directive envisions hastening the demise of a demented person who may not perceptibly be suffering, who may be getting some rudimentary satisfaction from a debilitated life, and who may no longer recall the directive’s underlying preoccupation with a personal vision of intolerable indignity.  Can and should such an advance directive be implemented?

Some medico-legal commentators express moral compunctions about surrogates allowing an uncomprehending, ostensibly content individual to die.[ii]  These commentators focus on the experiential interests of the now-incompetent person.  For them, the demented person’s previous dignity-based concerns have been forgotten and are now irrelevant.  For them, a surrogate’s moral obligation is to prevent the “harm” of avoidable death for a non-suffering, demented patient – regardless of contrary advance instructions.

For me, these moral claims are both unconvincing and counter to the prevailing legal frameworks.  Overriding clear, considered advance instructions declining medical intervention at a point of self-defined intolerable indignity is itself a serious harm – even if the now-incompetent patient can no longer comprehend the violation of previous wishes.

American law and custom respect prospective autonomy (or precedent autonomy) in various contexts.  These contexts include the disposition of property via contract, irrevocable trust, or last will and testament, as well as organ and tissue donation and disposal of mortal remains.  And they include a prerogative of a competent person to shape the medical fate of their future demented persona according to personal values and visions of intolerable indignity.  (That is the central function of an advance directive).

I have argued elsewhere that prospective control of a later, helpless persona is not immoral.[iii]  While a later, demented self may have a very different character, personality, and memory set than a prior competent self, the 2 personas constitute a single person whose life narrative is unfolding in successive stages.  The demented persona has the same body, the same spouse, the same relatives, the same property, the same religion, and (I argue) the same principles as its competent predecessor.  The self-determination prerogative (dominion over the medical fate of a future persona) has, I contend, been earned by the competent person who nurtured and developed the body, character, relationships, and lifetime images associated with the later, incompetent persona.

American law upholds efforts of competent persons to control the medical fate of their subsequent incompetent personas.  Starting with Quinlan in 1976,[iv] landmark opinions have established a fundamental right of competent persons to reject (or accept) life-sustaining medical interventions.  This right is grounded in self-determination and bodily integrity and is anchored by various courts in the common law, state constitutional provisions, or the liberty clause of the 14th Amendment of the federal constitution.  Importantly, the same courts declare that a competent person’s right to control medical intervention is not lost by onset of incompetency.  If the now-incompetent patient has left clear instructions regarding post-competence medical handling, those instructions effectuate the patient’s right to control medical intervention.  The widely prevalent legal standard for surrogate medical decisionmaking – substituted judgment – dictates adherence to prior instructions and thus secures for an incompetent patient “the same panoply of rights and choices” as accorded to competent persons.[v]  Moreover, prevailing medical ethics also dictate upholding a now-incompetent patient’s prior treatment choices even in the face of a physician’s differing value judgment about remaining quality of life.[vi]

That an advance instruction withholding life-sustaining medical intervention from a helpless, non-suffering demented person is both lawful and moral does not mean that it will be readily implemented.  The medical treatment of an incompetent patient is in the hands of a designated agent (or other surrogate) along with attendant care providers.  For them, it cannot be easy to allow the preventable death of an individual who still derives some rudimentary satisfaction from life, even if that was the patient’s express wish.

It will take a resolute, committed agent or surrogate to secure implementation of the contemplated dignity-based instructions.  The declarant in an advance directive cannot rely on legal sanctions to enforce the advance instructions.  Courts are not likely to punish surrogate decision makers or care providers for failure to facilitate the death of a non-suffering patient who no longer recalls his or her dignity-based instructions.  The damage flowing from maintenance of life contra to prior instructions is not readily calculable in monetary terms.[vii]

Even without an efficient enforcement mechanism, a declarant can include advance directive provisions that enhance the prospects for implementation of dignity-grounded instructions.  The following is my own, revised advance directive geared to avoiding prolongation of life in a demented state that I deem intolerably undignified.  It invokes my common-law and constitutional prerogatives to shape my post-competence medical fate.[viii]  It includes provisions that should reinforce the resolve of my decision-making agent and should assist that agent in overcoming any resistance from care providers or others.

 

                                           My Revised Advance Directive

I have witnessed the ravages that Alzheimer’s disease and similar progressive dementias produce.  I wish to be allowed to die upon reaching a degree of permanent mental dysfunction that I deem to be intolerably demeaning.  For me, this means mental deterioration to a point when I can no longer read and understand written material such as a newspaper or financial records such as a checkbook.

This wish to hasten my post-competence demise is not based on prospective suffering or distress, but rather on my personal vision of intolerable indignity and degradation associated with cognitive dysfunction.  For me, it is critical to shape the post-mortem recollections of my loved ones and to preserve the lifetime image as a vital, critically thinking individual that I have strived to cultivate.  In addition, it is important to me to avoid being an emotional, physical, or financial burden on my family and friends, even if they would willingly assume such burdens.

I fully understand that my determination to avoid prolonged, progressive debilitation could prompt my demise even though I might appear content in my debilitated condition.  I am exercising my prerogatives of self-determination and bodily integrity to shape my lifetime narrative, including my dying process, in accord with my strong aversions to mental dysfunction and to dependence on others.

My determination not to prolong my life at the described point of debilitation includes rejection of any and all life-sustaining means.  This includes simplistic medical interventions such as antibiotics, blood transfusions, and antiarrythmics, as well as more complex interventions like CPR, mechanical ventilation, dialysis, and artificial nutrition and hydration.  Indeed, if my dementia or any other affliction has produced inability or unwillingness to feed myself – for example, because of swallowing difficulties, or other eating disorders, or just indifference to eating — I instruct that my caregivers refrain from hand feeding unless I appear receptive to eating and drinking (show signs of enjoyment or positive anticipation).  If I am indifferent or resistant to hand feeding, I do not want to be cajoled, harassed, or in any way impelled to eat or drink.

The only limitation on my advance rejection of life-sustaining medical intervention is adherence to humane treatment.  That is, I have no desire to subject my future incompetent persona to a torturous or agonizing dying process.  I presume that palliative steps — including medication for pain, anxiety, or agitation — will be taken to ease my dying process.

The question may arise as to whether I have had a change of mind and revoked my advance directive.  My wish is that no revocation be found unless I do so while still capable of a considered choice, including appreciation of all the major elements involved.  I urge my decision-making agents to avoid the temptation of manipulating my future, incompetent persona to contradict or alter my advance instructions.  And I direct that my original instructions be honored absent an aware, considered change of mind (as opposed to uncomprehending expressions by my demented persona).

 

 

 

[i] N. Cantor, Making Advance Directives Meaningful, 4 Psych., Public Policy & Law 629, 636 (1998).

 

[ii] R. Dresser, Toward a Humane Death with Dementia, 44:3 Hastings Cent. Rep. 38 (2014); R. Dresser, Pre-emptive suicide, precedent autonomy and preclinical Alzheimer’s disease, 40 J. Med. Ethics 550 (Aug. 2014); J.A. Robertson, Cruzan and the Constitutional Status of Nontreatment Decisions for Incompetent Patients, 25 Ga. L. Rev. 1139, 1159-62 (1991).

 

 [iii] N.L. Cantor, Is It Immoral for Me to Dictate an Accelerated Death for My Future Demented Self?  http:// blogs.law.harvard.edu/billofhealth/2015/12/02 ; N.L. Cantor, Prospective Autonomy: On the Limits of Shaping One’s Post-competence Medical Fate, 8 J. Contemp. Health L. & Policy 13, 29-33 (1992); B.A. Rich, Prospective Autonomy and Critical Interests: The Moral Authority of Advance Directives, 6 Cambridge Q. of H.C. Ethics 138 (1997).

 

[iv] 355 A.2d 647 (N.J. 1976)

Brophy v. N. Eng. Sinai Hospital, 497 N.E.2d 626, 634 (Mass. 1986).  [v]

 

vi AMA Principles of Medical Ethics, Current Opinions of the Council on Ethical and Judicial Affairs, Sections 5.2(e) & 5.3 (2016).

 

[vii] There are occasional damage suits or administrative proceedings brought against medical personnel and institutions for violating advance directives rejecting life support.  See T.M. Pope, Legal Briefing: New Penalties for Disregarding Advance Directives and DNR Orders, 28 J. Clin. Ethics 74 (Spring 2017).  Such proceedings offer encouraging signs for enforcing implementation of advance directives, but they do not yet constitute a strong impetus to honor advance directives.  This is so in part because some courts may insist that monetary damages, such as for pain and suffering or for costs of unwanted medical services, be set off against the presumed intrinsic value of extended human life.  See generally H. Fernandez Lynch, M. Mathes, & N.N. Sawicki, Compliance with Advance Directives: Wrongful Living and Tort Law Incentives, 29 J. Legal Med. 133-78 (2008).

 

Because my directive is grounded in common-law and constitutional rights, it is not constricted by [viii]

preconditions, such as a “terminal” condition, contained in some living will legislation.  Such living will statutes cannot override constitutional prerogatives and they generally do not purport to.  Most living will statutes contain a “savings” provision preserving the existing common-law and constitutional prerogatives that a patient has, including the prerogative to leave advance medical instructions.  See K.L. Cerminara & J.R. Kadis, Give Me Liberty to Choose (A Better) Death: Respecting Autonomy More Fully in Advance Directive Statutes, 10 J. Health L. & Policy 67, 70-73 (2016).

Can the Right to Stop Eating and Drinking be Exercised via a Surrogate Acting Pursuant to an Advance Instruction?

The right of a grievously stricken, competent patient to hasten death by ceasing eating and drinking is increasingly recognized. See T. Pope & L. Anderson, VSED, 17 Widener L.Rev. 363 (2012); Cantor, http://blogs.harvard.edu/billofhealth/2016/11/18/patients-right-to-stop-eating-and-drinking/   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?

As a person intent on avoiding being mired in deep dementia, I wish I could declare that the described post-competence SED tactic is legally sound.  But I can’t.  In the form it is currently recognized, the right to SED cannot readily be translated to the context of a moderately demented person.  Here’s why.

A competent stricken patient who hastens death by initiating SED is not simply invoking the well-established liberty right to reject life-sustaining medical intervention in order to let a natural affliction take its course.  Unusual suicidal overtones are present.  For example, an ALS patient who stops accepting food and drink is undertaking a deviant course (SED) that will precipitate death.  The proximate cause of death will be self-initiated dehydration rather than the underlying ALS disease process.  Common judicial willingness to overlook the suicidal overtones, and to accept a right to SED, hinges on 2 factors:  a) a patient’s contemporary judgment that the serious medical affliction entails such intolerable debilitation and/or suffering that death by dehydration is preferable; and b) the repulsive inhumanity of the prospective medical intervention.   (In the context of a stricken person determined to resist feeding, the contemplated medical solution — forced feeding — involves unwanted bodily invasions and physical or chemical restraints widely deemed inhumane).

Neither of these factors underpinning the right to SED is present once a patient is no longer mentally competent.  The stricken patient is no longer capable of deciding that the current deteriorated status is so intolerably undignified or distressing that death by dehydration is preferable.  And the contemplated medical intervention – hand feeding to a willing patient – entails no revolting indignity.  Without these elements, even with an advance instruction in hand, a surrogate decision maker who seeks to initiate SED for a moderately demented patient willingly accepting oral feeding is treading in euthanasia or assisted dying territory.  The legal tolerance for self-destruction implicit in acceptance of a “right” to SED might well not be extended to a now-demented patient.

All this does not mean that advance directives are inapplicable to post-competence matters of nutrition and hydration.  For when hand feeding becomes a form of medical intervention, a person’s prerogative of using prospective autonomy (advance instructions) to shape post-competence medical treatment does come into play.

This prospective control of medical intervention is not dependent on living will statutes with their typical constraints like a “terminal illness” requirement.  Long before widespread living will legislation, prominent courts recognized that a patient’s basic common law right to control medical measures extends to a post-competence stage so long as clear prior instructions exist.   State courts led the way in ruling that a person’s common-law and/or constitutional liberty to control medical choices does not vanish upon incompetence.  E.g., In re Browning, 568 So.2d 4 (Fla. 1990); In re Jobes, 529 A.2d 434, 451 (N.J. 1987).   The U.S. Supreme Court concurred in dictum in Cruzan.  This judicial recognition is reinforced in the many states that statutorily provide for advance appointment of health care agents with authority to make the same range of medical decisions as competent patients.  Such statutes commonly require the designated agent to implement the patient’s known wishes concerning post-competence medical care.

This “prospective autonomy” legal framework for post-competence cessation of nutrition is applicable where the relevant feeding techniques qualify as medical intervention.  For example, where dementia produces swallowing or digestive disorders necessitating ANH (by nasogastric tube or PEG tube), medical intervention is clearly in issue and the now-incompetent patient’s prior instructions should govern.

The harder question is whether hand feeding necessitated by common eating deficits accompanying progressive dementia qualifies as medical treatment.   Reduced nutritional intake can flow from cognitive decline (such as non-recognition of food or eating utensils) or physical deterioration (such as loss of mechanical skills for self-feeding).  From one perspective, hand feeding is then a therapeutic “medical” response to pathology associated with the degenerative affliction.  However, if the demented patient is still willing to eat and is accepting hand feeding, and eating assistance can be performed by non-medical personnel, such feeding might be classified as basic personal care rather than medical treatment.  (Whether basic personal care can be rejected by a binding advance instruction is an open issue).

Even if the presence of an eating disorder emanating from dementia qualifies manual feeding as medical intervention, implementation of an advance instruction rejecting hand feeding is fraught with hurdles – at least at stages of decline preceding advanced dementia.  Keep in mind the common profile of a moderately demented person.  Despite significant cognitive debilitation, that person is not perceptibly suffering and may ostensibly be deriving modest pleasures from life.  (E.g., listening to music).  That moderately demented person no longer recalls his or her once strong aversion to the perceived indignities of debilitation and dependency.  I.e., that person no longer remembers their previously expressed determination to reject hand feeding in order to hasten their post-competence demise.  In those circumstances, even a clear prior instruction to forgo all forms of nutrition and hydration faces complications or challenges in implementation.

The first complication relates to the nature of the dying process for the moderately demented person whose advance instruction rejects all nutrition, including hand feeding, at the stage of cognitive decline now at hand.  A competent person who undertakes SED needs a resolute will to overcome normal hunger and thirst pangs as well as to resist entreaties from people opposing the fasting plan.  That resolve must remain firm for 6 to 10 days until the fasting patient slips into coma; ingesting even small amounts of nutrition or hydration may substantially prolong the dying process.  A moderately demented person may lack the requisite motivation and determination, thus creating potential for a much more protracted and distressful dying process.  Such a person might be expecting and seeking food and drink and might be distressed by their absence.  Some caregivers might capitulate to sporadic entreaties and provide nutritional intake extending the dying process.

On the other hand, perhaps palliative interventions (sedation) can ease the confusion or agitation of the moderately demented patient.  And perhaps some demented patients will be unperturbed and indifferent to absence of nutrition.  In such instances, a placid death by dehydration might be available for the demented patient.  In short, the process of death by dehydration for an uncomprehending patient is uncharted territory.  A modicum of dignity in the dying process might, or might not, be available in the context of surrogate- initiated cessation of hand feeding.

Another potential obstacle to post-competence SED is caregivers’ reluctance to cooperate with a surrogate-initiated cessation of hand feeding.  Some physicians, nurses, or health care aides see provision of food and water by mouth as a symbolic gesture of caring for fellow humans that is demanded by the caregivers’ ethical or conscientious principles.  Such moral compunctions may also underlie institutional policies (in Catholic and some other elder-care facilities) opposed to withholding of hand feeding.  Professional and institutional reluctance to cooperate with non-feeding will be most intense where the moderately demented person is still engaged in positive interactions with their surroundings.  While the conscientious objections of some caregivers should not override a clearly expressed advance rejection of medical intervention, finding replacement caregivers may pose a significant practical obstacle to implementation of the advance instruction declining hand feeding.

A final challenge lies in interpreting the conduct of a demented patient who is now seeking or accepting hand feeding despite a prior instruction rejecting post-competence hand feeding.  A person who dictates an advance instruction is entitled to change their mind and revoke.  Does a demented patient’s acceptance of hand feeding or utterance of a verbal request for food and drink constitute an effective revocation of a prior instruction?

A counter perspective is that the demented, uncomprehending patient is acting by reflex rather than by volition or is being manipulated by surrounding people exploiting the suggestibility of the now-incompetent patient.  The legal reality is that no established judicial standard exists for assessing cognitive capacity needed to revoke an advance instruction invoking a right to prospectively reject medical care.  Note that statutes speaking to living wills typically make advance directives revocable even by post-competence utterances.  These statutes don’t apply to prospective exercise of the basic common-law right to reject medical intervention.  But they still reflect a customary willingness to defer to contemporaneous life-extending expressions – even from mentally incapacitated persons.  And at least one court has ruled that a totally uncomprehending acceptance of spoon feeding is legally sufficient consent to hand feeding.  See Bentley v. Maplewood Seniors Care, 2014 BCSC 165 (Feb. 2014), affirmed 2015 BCCA 91 (British Columbia Ct. App. 2015).  (That case did not deal with a clear prior instruction rejecting hand feeding).

What, then, are the tentative conclusions regarding the legal status of advance instructions rejecting post-competence hand feeding?  One is that the recognized right of a competent, stricken patient to SED is not readily translatable to the context of a now-incompetent patient.  Another is that a legally sound theoretical framework exists for enforcing advance instructions to reject nutrition and hydration, including hand feeding, so long as the hand feeding can be classified as medical intervention necessitated by pathologies associated with progressive dementia.  Despite that sound legal framework, though, a variety of complications or hurdles exist in implementing an advance non-feeding instruction regarding a moderately demented patient (as opposed to a patient who has reached advanced dementia).

These complications or hurdles face any person whose aversion to the indignities of cognitive debilitation fuels a desire to hasten death once a significantly demented status has been reached.  That desire might prompt advance instructions to forgo even the most simplistic medical interventions such as antibiotics for any infection.  Such instructions encounter an instinctive human reluctance to hasten the death of a person who, while cognitively debilitated, is not suffering, derives some satisfaction from continued existence, and no longer recalls the dignity and life-image concerns that motivated a prior instruction to forgo even simplistic medical interventions.  That topic goes beyond provision of nutrition and hydration and deserves to be addressed further.  Stay tuned.

 

 

 

Honing the Emerging Right to Stop Eating and Drinking

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,[1] 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.

The main hangup in asserting a fundamental right to VSED is the spectre of suicide in the scenario.  Overtones of suicide exist if, for example, a gradually deteriorating ALS patient stops eating and drinking despite months or years of salvageable life.  A person in distress is initiating a deviant course of conduct (cessation of eating and drinking) with the intention of hastening death.  In contrast to a cancer patient rejecting chemotherapy who dies from metasteses, the proximate cause of death is self-initiated dehydration rather than the underlying pathology.  While suicide is no longer criminal, it is still widely disapproved.  State statutes punish assistance to suicide and even authorize physical intervention to frustrate attempts at suicide.  At first blush, it may seem incongruous to associate what appears to be a form of suicide with a fundamental liberty interest.  (The U.S. Supreme Court previously rejected the notion that physician-assisted dying might be deemed a fundamental aspect of constitutional liberty).

Keep in mind, though, that courts have often made fine distinctions and refused to apply the label or taint of suicide in the context of stricken patients managing medical responses to the patients’ natural afflictions.   Consider the case of Elizabeth Bouvia, a 28 year-old quadriplegic suffering from severe cerebral palsy and arthritis.  Because Ms. Bouvia could not retain solid foods, she was being spoon fed soft foods supplemented by artificial nutrition via a naso-gastric tube.  When Ms. Bouvia sought discontinuation of the feeding tube, the hospital sought judicial authorization to override her wishes and to maintain the artificial feeding.  The hospital contended that Ms. Bouvia could live another 15 or 20 years, so that her discontinuation would constitute impermissible suicide.  The California appellate court refused to label the disputed conduct as suicide despite the patient’s deviation from customary conduct and despite an intention to hasten death.  Rather, the court deemed Ms. Bouvia’s cessation of a life-preserving feeding tube to be within her fundamental liberty right, under state and federal constitutions, to control medical interventions.  The court upheld this medical patient’s entitlement to decide that her current or prospective quality of life was so dismal as to be personally intolerable.

Cases like Bouvia signal the likely judicial response to VSED.  In the context of stricken patients facing fatal or severe degenerative conditions, a patient’s considered choice to SED will be upheld despite the overtones of suicide discerned.  Two elements account for this permissive response to a patient’s rejection of nutrition and hydration.  The first is sympathy for the plight of a person whose affliction has rendered quality of life personally intolerable.  It is easy to empathize with the frustrations, burdens, and anxiety of people facing fatal or chronic degenerative disease.  The second element is judicial revulsion at the prospect of overcoming the patient’s will and restraining an afflicted and distressed person.  As in the case of tethering someone to an unwanted respirator or dialysis machine, forced feeding seems highly inhumane.  Where a fasting patient refuses to cooperate with hand feeding, intervention entails physical or chemical restraints particularly repulsive when directed to a seriously stricken, weakened patient.  The older and frailer the person terminally fasting, the more certain the court is to treat SED as protected rejection of medical intervention.

While the protected legal status of VSED is thus secure in the context of stricken patients, the status of SED is uncertain as to otherwise healthy individuals rejecting food, water, and ANH.  The context in which several state courts have considered the tension between a healthy person’s SED and suicide is that of hunger striking prisoners.

A variety of motives might prompt a prison inmate to launch a terminal fast.  A prisoner may be dispirited by the dismal prison lifestyle and prefer death.  A prisoner may be fasting in protest over dismal conditions with the hope of extracting changes in the challenged conditions.  A prisoner may be fasting as a protest over some perceived world injustice – thus making a symbolic statement to the world.  When a prisoner’s rejection of food and water poses a mortal danger, prison authorities seek to impose ANH and the affected prisoners commonly invoke their constitutional claim to bodily integrity and self-determination.

Courts in at least 6 states have confronted this clash between prisoners and prison officials over a prisoner’s asserted right to SED.  The judicial response has been varied.  In 3 states (Florida, Georgia, and California), courts endorsed the prisoner’s claim, viewing the rejection of tendered feeding tubes as tantamount to the recognized constitutional prerogative to reject life-sustaining medical intervention.  These courts focused on the bodily integrity of the prisoner rather than the officials’ asserted interest in preventing self-destruction.  In 3 other states (New York, New Hampshire, and Rhode Island), the courts ruled against the prisoners seeking to assert a constitutional right to SED.  These courts upheld prison authorities’ interests in maintaining prison routine and in preserving healthy lives of people assigned to state custody.  They saw a healthy prisoner’s fast more as unprotected suicide than as invocation of a fundamental liberty interest.

It shouldn’t matter much that the legal prerogative to stop eating and drinking might not be universally applied to healthy individuals interested in terminal fasting.  A relatively small number of people are so disconsolate over social or economic circumstances that they would seek to use SED to precipitate death by dehydration.  And some of those disconsolate individuals reside in states where their considered determination to terminally fast would be legally upheld (including Florida, Georgia, and California) or where forced feeding would be deemed too repulsive and inhumane to implement.  In any event, there should be more societal empathy, understanding, and concern for the far larger number of people facing fatal afflictions whose struggle to subsist has become intolerably burdensome.

The very good news is that law will uphold a right to SED in the context of persons stricken with fatal or serious degenerative maladies.  VSED thus becomes another tool in the pursuit of death with a modicum of dignity for people who determine that the struggle with a degenerative affliction has become intolerably exhausting or arduous.  And this SED prerogative is available under the currently prevailing legal framework without need for legislative intervention.  The challenge now is to promote awareness of this option and the modest measures needed for its implementation (assistance in mouth hygiene, lip moisture, and sedatives as needed).

[1] See N. Cantor, “On Hastening Death without Violating Legal or Moral Prohibitions,” 37 Loyola Chi. L. Rev. 407 (2005);  N.Cantor & G.Thomas, “The Legal Bounds of Physician Conduct Hastening Death,” 48 Buffalo L. Rev. 83, 95-110 (2000).  Other supportive  commentators include Thaddeus Pope, Timothy Quill, and Robert Truog.