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.

Memo to Anti-Zionist Jews

(This post appeared on The Times of Israel blog platform on May 2, 2016)

If your anti-Zionism flows from a religious conviction that a Jewish state is a sacrilege if established before the coming of the messiah, read no further. I cannot alter your faith-based credo.

If your anti-Zionism flows from a conviction that the Jewish state of Israel is by its founding and nature a racist oppressor of Arabs, then I can try to dispel the “big lies” that have fueled that belief. Read on as I address the slogans and distortions that underlie efforts of anti-Zionists to demonize and delegitimize the state of Israel.

A fair definition of Zionism is a Jewish movement to reestablish sovereignty in part of the ancient Jewish homeland in Palestine in order to serve as a refuge for the multitude of Jews facing oppression in their foreign environs. In 1922, even before the Holocaust, the League of Nations acknowledged that centuries of inquisitions, mass expulsions, forced ghettoization, and pogroms warranted a Jewish refuge. Sparsely populated Palestine was an appropriate locus given the historical and ongoing connection of the Jewish people with that land.

Nothing in the Zionist vision entailed exploitation or expulsion of local Arab populations. The 1922 League of Nations mandate to Britain to manage the Palestine portion of the former Ottoman Empire endorsed Jews’ settlement in their ancient homeland but explicitly preserved the civil rights of existing non-Jewish communities. Israel’s 1948 declaration of independence pledged to develop the country for the benefit of all its inhabitants and to assure all inhabitants equal political and religious freedoms. The implementation of that vision is far from perfect, but it’s also far from the nefarious picture painted by anti-Zionist accusers.

The first anti-Zionist calumny is that Israel was founded as a colonialist enterprise intending to ethnically cleanse resident Arabs. A small Jewish presence remained in Palestine even after ancient diasporas. Starting in the 1860’s, more Jews migrated into sparsely populated Palestine (then a part of the Ottoman Turkish Empire) and purchased land for small, mostly agricultural enclaves. In the early 1900’s, those early Jewish settlers were joined by Russian migrants fleeing pogroms. In the 1930’s, German Jews fleeing Nazi persecution also sought refuge in Palestine. These 20th century Jewish migrants and refugees had equal legal and moral status with the many thousands of Arabs who were then migrating into Palestine from the surrounding Arab areas of Lebanon, Syria, and Egypt. During the early 20th century, both Jews and Arabs settled in Palestine and both ethnic groups revolted against the British mandatory rule that prevailed between 1922 and 1947.

In 1948, Israel agreed to a United Nations partition plan for Palestine under which Jewish residents would be sovereign over a small portion of original mandatory Palestine and Arabs would rule over another portion allotted to them by the U.N. (As noted, Israel agreed to equal rights for the Arab minority remaining under its sovereignty). Arabs rejected the partition and Arab armies from surrounding Arab countries promptly attacked the fledgling Jewish state vowing to drive the Jews into the sea. In the vast disruption prompted by the Arab-initiated war, several hundred thousand Arabs became refugees and hundreds of thousands of Jews were forced to leave their homes in North Africa and Arab countries. Hundreds of thousands of local Arabs chose not to flee in 1948 and they became the source of the 1.7 million Arabs who today are full citizens of Israel. Any notion of virulent Israeli colonialism is also belied by Israel’s relinquishment of the Sinai peninsula (via a 1979 peace treaty with Egypt), by its unilateral withdrawals from Gaza (2005) and south Lebanon (2000), and by prior offers to Yasser Arafat (Camp David 2000) and Mahmoud Abbas (2008) to relinquish over 90% of the West Bank.

The second anti-Zionist calumny is that Israel is an “apartheid” state. As a resident of Tel Aviv and a former law faculty member at Tel Aviv University, I am well situated to refute that malicious distortion. Israeli Arabs have full political rights and occupy 10 percent of the parliamentary seats. Arabs work in most sectors of the Israeli economy, including as lawyers, judges, physicians, nurses, pharmacists, and hi-tech engineers. Arabs constitute over 10 percent of university students. Arab shoppers regularly mingle with Jewish shoppers in malls and on public transportation. While there is considerable discrimination against Arabs in Israeli society that needs to be overcome, the current scene is far from apartheid.

The final anti-Zionist calumny is that Israel is engaged in a genocidal campaign against Palestinian Arabs in Gaza and in parts of the West Bank. As to Gaza, Israel in 2005 unilaterally withdrew settlers and armed forces from Gaza, hoping that the Gazans would exercise self-rule for self-benefit. Instead, Hamas violently seized control, ruthlessly suppressed all forms of freedom, and launched thousands of missiles wreaking havoc and trauma in Israel’s civilian border communities. In an effort to end the missile barrages, Israeli forces have invaded and bombed Gaza 3 times, inflicting heavy casualties.

There have been many civilian casualties in those Gaza invasions, as was the case in comparable allied operations in places like Afghanistan, Iraq, Kosovo, Libya, and Yemen. When belligerents like Hamas (or ISIS) use mosques, schools, and other civilian structures for weapon storage and launchings, these misused structures become possible targets. Israel adheres to international legal standards of proportionality in selecting targets and takes steps (like telephoning possible civilian occupants) to avoid excessive collateral damage. See http://www.youtube.com/watch?v=NX6vyT8RzMo&feature=player_embedded

Arab residents of parts of the West Bank are indeed subject to harsh Israeli control entailing serious limitations on travel, work access, and building. On occasion, either isolated soldiers or Jewish settlers exacerbate that harsh control via criminal acts of assault, vandalism, and even homicide. Such misdeeds are in no way part of Israeli policy and are subject to criminal punishment by Israeli authorities. Three Jewish terrorists were recently convicted for the vicious murder of a Palestinian teen in 2014. Two of them received life sentences. More Jewish extremists are now under indictment for criminal activities (including arson) directed against West Bank Arabs. An Israeli soldier who recently killed a disarmed Palestinian assailant is now facing homicide charges. All this refutes the notion that Israel is conducting a genocidal campaign toward Palestinians.

Many “liberal” Zionists are troubled by Israeli domination over more than 2 million Arab Palestinians in the West Bank and they therefore pursue a 2-state solution. People like Ari Shavit, Yair Lapid, Dennis Ross, and Alan Dershowitz are vocal critics of some of the Netanyahu government’s policies while still supporting Israel’s entitlement to secure borders and staunch defense of its citizens. These liberal Zionists recognize that Palestinian rejectionism toward prior peace offers and contemporary Palestinian incitement to violence against all Jews undermine the prospects of a peaceful resolution. These Zionist critics also recognize that anti-Zionism, the delegitimization of Israeli statehood, is counter-productive to the ultimate well being of both the Jewish and Arab populations of what was formerly mandatory Palestine. Any attempt to dismantle Israel would precipitate violent confrontation incalculably costly to all sides.

If you seek a just solution to the Israeli-Palestinian Arab conflict, I urge you to forego the counter-productive anti-Zionist position and to join the liberal Zionist ranks.

Ancient But Quaint Expressions

Over the course of 72 years, I’ve heard a multitude of colorful ways to express thoughts or describe phenomena. Too many of those choice expressions have already evaporated from my aging brain, but a modest number subsist. I think I owe it to posterity to record at least the most memorable and piquant examples. Posterity might well decide that it doesn’t need or want any reminder of these “classic” idioms, but at least I will have tried.

Keep in mind that my formative years for self-expression were the 1950’s and the 1960’s, so if you were born after 1970 your non-recognition of certain terms can be forgiven. Keep in mind also that we, the war-baby generation, were quite precocious as to profanity. As I look back at our lexicon of phrases, it’s quite amazing what crude and crass little suckers we were. If you’re averse to perpetuating profanity, keep this missive out of the hands of your impressionable grandchildren.

Some expressions never die. Just the other day I heard “Is the pope Catholic?” as a shorthand comment about an issue whose answer should be utterly self-evident. But that rhetorical question about the pope was a hackneyed phrase even 50 years ago. Some of us had a more colorful rejoinder to obviousness. We queried: “Do bears shit in the woods?” An even quainter expression that I’ve always favored is: “Does a hobby horse have a wooden asshole?”

As youngsters trying to cover up our various insecurities, we were adept at using crude and crass expressions to disparage or mock others around us. There was a vast array of put-downs for seemingly stupid statements. One common retort to perceived stupidity (dating from the 1960’s) was: “you don’t know diddilysquat” about that! The term “diddilysquat” was sometimes shortened to “squat,” as in “you don’t know squat about that.” Another derisive comment dating back to the 1950’s was: “you don’t know shit from shinola!” (Today, everyone wears running shoes, so you probably didn’t even know that shinola is shoe polish). Yet I always thought it was pretty evocative to tell a dolt encountered that he was so obtuse as to be unable to differentiate between excrement and dark shoe polish. The most evocative put-down, reserved for really outrageous ignorance, is: “you must be suffering from a cranial-rectal inversion.” What an elegant way to tell your unworthy adversary that their views are so distorted that their head must be lodged up their ass!

Our youthful crassness and vulgarity was not confined to mocking stupidity. Sometimes, the context was angry response to perceived provocation. We (meaning young males, as I never hung out with young females) had a vast repertoire of nasty rejoinders utilizing the words fuck or suck. “Fuck you” was a pallid starting point in our insult lexicon. Like George Carlin in one of his monologues, I marveled at the irony of telling an antagonist to go perform a pleasurable act. The hostile sexual imagery also provoked in me another wonderment. As many times as I heard “go fuck yourself,” it never failed to trigger wonder about the contortions entailed in accomplishing the prescribed action. A propos physical wonders, consider an angry command once directed at me to “go take a flying fuck in a donut.” Think about the intricate mechanics involved in penetrating the hole of an airborne donut! Along the same lines, I had a friend who referred to any disdained adversary as “needledick, the bug fucker.” (Male insecurity being as acute as it is, it was always provocative to mock the size of someone else’s member.)

Our youthful coarseness came out in other expressive contexts. In communicating the fact of a recent death, we were aware of social preferences for euphemisms like “passed away” or “entered into eternal rest.” Nonetheless, if reporting the death of a stranger or non-friend acquaintance, we resorted to more vivid expressions. Sometimes, we noted, as they did in cowboy movies, that decedent X had “bit the dust.” That colorful expression always seemed incongruous in an era in which most people died in bed or on paved surfaces rather than in dusty corrals. Perhaps our favorite death announcement was that X had “croaked.” That formulation would have been particularly apt if the decedent had died under conditions of respiratory distress like COPD, but our usage of “croaked” was not so confined. We also used the more stock term “kicked the bucket,” though I confess I never understood what bucket was involved. Back in the 1950’s, I heard the phrase “took a mort” to report a death. I liked the cosmopolitan element of injecting French into the pronouncement, but today the French usage would probably come across as pretentious rather than as a bon mot.

Callow, testosterone crazed youth that we were, we regularly fantasized about romantic conquest. Often we were smitten with some bedazzling female but totally incapable of transforming our adulation into an actual approach. We could, though, colorfully describe our yearning to our equally hapless colleagues. A yearning suitor would typically convey the intensity of his homage by stressing the level of sacrifice to which he was willing to go just to be received by the wondrous, intimidating female. For example, the suitor might say: “I would crawl a mile on my hands and knees” (sometimes adding snow or sand to the projected image) if “she” would just deign to receive me. This willingness to drag oneself a great distance was indeed a fitting expression of enamorment. But I once heard an even more evocative and convincing communication of homage and devotion. A besotted friend remarked: “I would stand in shit up to my neck just to watch one of her turds float by!” That, to me, represented the ultimate in self-sacrifice and dedication.

Did young women have comparable expressions regarding desired studs? Again, I wouldn’t know, as I didn’t hang out in those circles.

Don’t think that all was doom, gloom, hostility, and frustration in our youthful vocabulary. Occasionally, we found colorful ways to express great enjoyment. For example, we were sometimes “happy as a pig in shit.” As in: ‘I was happy as a pig in shit’ while writing this blog piece.

Whatever debt to posterity I might have had has now been paid. What are the chances that posterity will appreciate and utilize this assortment of piquant expressions? As we used to say in the face of overwhelming negative odds: “there’s not a snowball’s chance in hell.” Or “the chances are somewhere between zero and nil.” Or we might say: “there’s about as much chance of that as for a fart in a windstorm.” Given the crude tone of this collection, that last expression is particularly apt.

My Plan to Avoid the Ravages of Extreme Dementia

(This piece was first published on the blog of the Petrie-Flom Ethics Center at Harvard Law School in April 2015.)

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.

I am not alone in a strong concern with prospective indignity associated with mental decline. Ezekiel Emanuel, a noted physician and ethics commentator, has expressed a determination to avoid the diminished function of a person over age 75. For him, his survivors’ recollection of his persona as “feeble, ineffectual, even pathetic” (at age 75 and beyond) would represent degradation that would indelibly soil his lifetime image. My own vision of intolerable indignity is not grounded in advanced age or physical decay, but rather in sharp intellectual deterioration thwarting my understanding and interacting with my surroundings. I also feel distaste for becoming a physical burden on others via necessary assistance in mobility, bathing, dressing, eating, and toileting. But my vision of intolerable indignity relates mainly to intellectual dysfunction. I wish to avoid incapacity to process information to a degree that renders me incompetent to make major life decisions such as where to live and whether to receive life-sustaining medical intervention.

Not everyone shares my extreme revulsion toward an end-of-life period immersed in mental dysfunction. Some people are resigned to subsisting under Alzheimer’s ravages (if and when such dementia comes) and they focus on advance planning aimed at treating their future incompetent persona humanely and in line with their (the planners’) values and preferences. For example, a person while still competent can designate a trusted agent to make future decisions and can express preferences about certain choices like type of living arrangement. (E.g., a wish to remain in home-based care as long as possible or a wish for group living as opposed to burdening a loved one). This advance planning can speak not only to residential locus, but also to type, extent, and financing of future medical care. Compassion and Choices, an organization focused on death with dignity, offers a model directive for treatment (or non-treatment) of someone stricken with Alzheimer’s or other dementia.

My own preference, at least after a definitive diagnosis of Alzheimer’s is received, is never to reach the mentally debilitated stage when I am no longer in charge of my fate. Rather, I plan to engineer my self-deliverance (to use a euphemism for suicide as is appropriate to someone stricken with a fatal affliction accelerating their own demise) while still competent to do so. This will be my course as long as no reliable therapies are available.

My plan raises an exquisite timing dilemma. Like the vast majority of people, I have a powerful will to live and a capacity to adjust to changing circumstances, including deteriorating circumstances. In the early stages of dementia, I expect to retain both mental capacity to shape my own fate and sufficient intellectual satisfaction to warrant continued existence. At the same time, self-deliverance demands a firm mental resolve that may be eroded by increasing dementia. A hazard is that the drive to live will prevail to a point when the mental capacity no longer exists to carry out my preferred course of self-deliverance. (From that point on, I, like every mentally debilitated person, would be dependent on a surrogate decision maker’s adherence to instructions articulated while I was still mentally competent. I will explain more later about the post-competence fate of a person who slips into incompetency before executing a planned self-deliverance, but who has previously expressed a desire to avoid the extreme dysfunction of advanced Alzheimer’s.)

Timing is not the only dilemma that will face me as an early Alzheimer’s patient seeking to avoid the descent into advanced dementia. The means of self-arranged death poses a further difficulty. I am repulsed by the violent and often gruesome methods used to commit suicide – like guns, razors, and leaps from great heights. Such methods don’t fulfill my conception of a modicum of dignity in dying. And they entail not only significant failure rates, but also the hazard of leaving the person seeking to die lingering on in a worsened state.

Various right-to-die organizations suggest less taxing means of self-deliverance. The most common method is ingestion of a lethal drug leading to unconsciousness within minutes and death within hours. This requires selecting and accessing an effective barbiturate or opioid (as opposed to simply overdosing on sleeping pills and thus risking either waking up post-overdose or regurgitating the pills). The appropriate drugs are highly controlled substances usually available only by prescription. Most physicians won’t prescribe or furnish lethal substances that might generate regulatory inquiries about assisting suicide. Note that even in states that have legalized assisted suicide, the authorization to supply a lethal substance does not apply to an early-stage alzheimer’s patient; that patient doesn’t meet the criterion of terminal illness (death likely within 6 months) needed for authorized provision of a lethal substance. Reliance on internet or foreign suppliers of a lethal substance carries a risk of fraud and /or violations of legal regulations. Beyond the challenge of obtaining the lethal substance, additional hurdles loom. To avoid the complications occasionally associated with lethal drug ingestion (primarily vomiting), an anti-emetic may be a desirable precaution. Again, some medical guidance is appropriate. Perhaps I (or you) can find a physician friend or a retired medical person willing to offer clandestine guidance in obtaining and using an appropriate lethal drug. I haven’t yet lined up the requisite medical back-up for exit by poison and I am meanwhile weighing other options.

Another means of self-arranged death suggested by right-to-die advocates is called the helium method. A properly equipped patient who breathes in helium will lapse into unconsciousness within seconds and die within a half hour. The requisite equipment is not hard to obtain via hardware and party supply stores – a small tank of helium, a plastic hood (large roasting bag), and plastic tubing. The failure rate with a properly assembled helium hood is very low and instructive videos are readily available. Advocates acknowledge, though, that many people seeking self-deliverance are deterred from the helium method. I am one of them, having no confidence in my mechanical skills in arranging even the relatively simple helium apparatus in question. So while I don’t find the vision of a helium hood and a short period of gasping to be excessively distressful or undignified, I am unlikely to employ that methodology.

Another supposedly painless and reliable means of self-arranged death is called “ligature compression.” This involves applying and twisting a tourniquet to press the carotid arteries in one’s neck. This technique stops the flow of oxygenated blood to the brain and leads to fainting and death. I am not likely to be using ligature compression in my role as an early Alzheimer’s patient seeking to hasten death. I would again be worried about my mechanical skill in arranging and twisting the tourniquet in a fashion that maintains pressure on the carotids while avoiding the windpipe and associated choking.

So how will I accomplish my own demise if I reject the most commonly used and recommended methods of self-arranged death like drugs and helium? My current leaning, based on research and reflection, is to stop eating and drinking (SED). Strict cessation of nutrition and hydration will typically result in death within 10 to 14 days. The dehydration impacts brain function so that the person who stops eating and drinking will lapse into unconsciousness over the first 5 to 8 days. After several more days, the dehydration prompts death by cardiac malfunction and arrest.

While the SED process can theoretically be accomplished alone and requires only resolve to resist initial feelings of hunger and thirst, it makes great sense to enlist some help to provide palliative or comfort care during the process. Such palliative care greatly reduces any chance that SED will be a torturous process. I plan to employ a home health aide capable of performing tasks like keeping mouth and lips moist (to avoid cracked lips and to help overcome thirst), maintaining oral cleanliness (to avoid fungal infections), and administering sedation (to cope with delirium or agitation that sometimes occurs). This comfort care might also include analgesics or anti-emetics if there is any underlying condition that necessitates pain relief or nausea control.

For me, the cessation of eating and drinking offers a reasonably peaceful, painless, and dignified enough way to accelerate death. Any spectre of an agonizing death by starvation is dispelled by lots of anecdotal evidence in the context of degenerative disease patients facing protracted and distasteful dying processes who resorted to SED. These include advanced cancer patients as well as others stricken with ALS, Parkinson’s Disease, or M.S. Many fatally stricken medical patients have opted for SED to cut short a protracted and emotionally draining dying process that has become personally intolerable. That also would be my prerogative as a victim of Alzheimer’s.

Does SED constitute suicide and would my home health aides be vulnerable to charges of assisting suicide by cooperating with my death by dehydration? There is an overtone of
suicide present because a fasting patient is initiating a fatal course (death by dehydration) with the specific intent to die. Nonetheless, many legal and medical commentators view SED and its assistance as a perfectly legal course in the context of a competent person stricken with a fatal malady. Such a stricken patient is clearly entitled to forgo or detach any life-sustaining ventilation, dialysis, blood transfusions, or antibiotics; and the patient’s wish to die does not convert the acceleration of death to suicide. The stricken patient is legally permitted to manage medical intervention in order to control the timing of an unavoidable death.

A fatally stricken patient using SED is similarly invoking concepts of bodily integrity, self-determination, and dignity. That patient is resisting forced feeding or medically initiated nutrition and hydration in order to avoid or shorten an intolerable stage of a degenerative condition.

The commentators asserting that SED is a lawful variation of resistance to unwanted medical intervention cannot rely on any authoritative ruling by an upper level court because such courts have not addressed the issue. However, rulings by lower courts in the U.S., Canada, and Australia have upheld the prerogative of a patient invoking SED to resist any forced intervention. This legal support is a natural outcome, given sympathy with the plight of fatigued, fatally stricken patients and revulsion at the prospect of restraints to overcome a competent patient’s will and bodily integrity. A right-to-die organization like Compassion and Choices may be exaggerating slightly in asserting that SED is “well established by law,” but their claim of legality is still basically sound.

A more sobering claim sometimes made against SED is that it is an excessively undignified dying process. Critics point to the overall duration (up to 2 and 1/2 weeks), the erosion of mental clarity (delirium flowing from dehydration), and several days of unconscious lingering as dehumanizing and humiliating. SED, they claim, also imposes “a horrible vigil” on surrounding family watching the wasting or unconscious patient die. In lawsuits brought by dying patients challenging laws against assisted suicide, plaintiffs depict SED as a protracted ordeal for both patients and family.

I have read several anecdotal reports in which an SED dying process is described by observers as brutal. These negative accounts are usually explainable by absence of precautions such as sedatives for patient agitation or analgesics for preexisting pathologies afflicting the fasting patient. Sometimes, surrounding family members find the death watch to be hard and the patient can be distressed by this hardship imposed on loved ones.

My personal assessment is that SED is not an intolerably undignified, stressful, or prolonged process. That the process demands firm resolve on the part of the fasting individual seems appropriate to the fateful, somber circumstances. The dying person’s opportunity to reflect and retract is for me a positive aspect of the process. Mental disruption in the form of delirium or agitation can be managed with sedatives. A period of insensate lingering may not be ideal, but this is akin to the natural dying process that often occurs for end-stage medical patients. Patients dying of degenerative conditions like cancer or heart disease frequently lapse into coma as a form of natural anesthesia at the end stage. Several days of unconsciousness does not seem to me like an intolerable affront to dignity, as opposed to a permanently vegetative state or protracted coma in which unconsciousness continues for months or years.

The duration of an SED dying process over 10 to 14 days seems tough compared with the rapidity of ingestion of a fatal drug. Keep in mind, though, that even in jurisdictions that allow assisted suicide by prescription drugs, the process extends over weeks or months. There, procedural safeguards, including mandated periods for a patient’s medical examination, consultation, reflection, and reaffirmation, dictate that the process is a protracted one.

Of course a death watch can be traumatic for those surrounding the fasting patient and witnessing a loved one accelerating their own demise by rejecting food and drink. Final leave takings are by their nature hard. I will not expect attendance by anyone around me who finds the process too arduous. I will not even inform anyone who seems too delicate or vulnerable. I regret the prospect of emotional suffering for anyone who undertakes my death watch, but it doesn’t alter my resolve. For me, an important consolation is knowledge that through SED I will be sparing future caregivers years of burdensome and stressful watch over a highly debilitated persona (an advanced Alzheimer’s patient) who I refuse to become.

An important question is why “rush” to self-deliverance while still competent, thereby risking a premature demise while still enjoying life and with potential for additional satisfaction. Why not prepare advance instructions regarding a post-competence fate and then depend on a carefully chosen surrogate decision maker to ensure one’s demise well before reaching the depths of advanced Alzheimer’s? My first response is that I don’t want to subsist in a mentally deteriorated state (incompetent to make important decisions) even if that status might be described for some period as “pleasantly” deranged. Therefore, my Plan A is to self-deliver while still competent, at some stage of early Alzheimer’s. Another response is that reliance on surrogate decision making to accelerate my post-competence demise is a very uncertain and problematic path.

In theory, a designated health care agent can and should implement whatever advance health care instructions I lay out. So I can express in advance my distaste for subsistence in a demented state and dictate that no life-sustaining medical intervention should take place post-competency. My directive can explicitly reject not only mechanical intervention like a ventilator, but also simplistic medical steps like antibiotics for infections or artificial nutrition (an i.v.) for swallowing or digestive disorders. I am willing to assume that statutory constrictions in certain states’ health care decisions acts (limiting surrogate end-of-life medical decisions to “terminally ill” patients) would not pose an obstacle to implementation of my instructions for medical handling. Such statutes are not intended to constrict common-law prerogatives to shape one’s post-competence medical fate. Nonetheless, this course relying on advance instructions to a health care agent is not, for me, satisfactory. Multiple variables and hurdles stand in the way of surrogate rejection of life-extending medical intervention as an expeditious path to post-competence death.

For starters, the occurrence of potentially life-threatening disease or infection is largely fortuitous, a matter of happenstance. As Alzheimer’s runs its course, periodic infections may arise from conditions like incontinence, swallowing difficulties, immobility, and reduced immune response. But years could go by before an infection or some other potentially fatal malady sets in. As noted, I don’t wish to subsist as a mentally debilitated, incompetent person at all, let alone one lingering for years in that status.

Some people shaping their post-competence medical fate seek to overcome the happenstance of illness timing by instructing their health care agent to initiate a post-competence SED process – i.e., surrogate cessation of nutrition and hydration (the technique I plan to employ while still competent). A typical provision instructs future caregivers not to offer food or water or tube feeding to the now-incompetent patient once a designated stage of mental decline has been reached. The underlying theory seems to be that a competent person’s right to SED can be exercised post-competency by a surrogate decision maker who has been so instructed.

I have serious doubts that surrogate-initiated SED offers a viable technique for abbreviating a person’s unwanted, seriously demented existence. Recall that the exercise of SED (even by a competent person) requires a resolute will and back-up by a palliative caregiver capable of dealing with sedatives and analgesics. At a post-competency stage, the Alzheimer’s patient may well have forgotten her prior determination to avoid indignity and may well be experiencing modest satisfactions in life with no sense of degradation; she is not perceptibly suffering. Under such circumstances, the designated agent, surrounding family, and the attending palliative care provider may have serious compunctions about engineering SED and causing the ostensibly content individual to die from dehydration. Even if the now-incompetent patient previously dictated this course by explicit directive, caregivers tend to associate food and water with care and compassion and may well be uncomfortable implementing prior SED instructions for a helpless, ostensibly content person who has no recollection of her prior resolve. The now-incompetent patient may at this stage be willingly accepting food and may even request food or drink if that is withheld. Causing hunger or frustration to the hapless, uncomprehending patient by surrogate-initiated SED seems inhumane (though sedatives would be available as a palliative measure). And the patient’s current willingness to eat might be viewed as a de facto revocation of the advance directive to withhold food and drink. (Implementation of an SED advance directive would be even more problematic in the several states whose legislation appears to ban withdrawal of oral nutrition from incompetent patients or in cases when the patient is now located in a nursing home or institution that has conscientious objections to cessation of hand feeding).

My current thinking, then, is that in order to avoid years of intolerably undignified dementia, I will have to arrange my own death – probably by SED – while I still have the capacity to carry it out. Some people might deem this course an immoral deprivation of my prospective future persona’s potential for a modestly pleasurable existence in a demented status that might not be experienced as degrading and undignified. I have no qualms about the morality of my foreclosing a future demented life. As an adult, I have nurtured and developed a character and a life image. I have earned the prerogative of avoiding an intolerably undignified existence even if my future persona would not be palpably suffering in that condition. My life narrative belongs to me, not my hypothetical future persona.

Post-Election Reflections about Israel’s Center-Left

(This piece appeared in the Times of Israel opinion section on April 6, 2015)

Much of the commentary following Benjamin Netanyahu’s winning of 30 knesset seats (versus 22 predicted in pre-election polls) attributes the victory to “fear” on the part of Israeli voters. That fear is that the parties to the left of Netanyahu will give away the store if placed in charge of Israel’s fate. The underlying perception is that the left naively believes that only Israeli intransigence blocks permanent peace with the Palestinians. From the left’s supposed perspective, if Israel would only withdraw from most of Judea and Samaria and agree to Palestinian sovereignty there, all contending parties could grasp hands and sing Kumbaya.

If unilateral withdrawal from the West Bank were the Zionist Union’s (center-left) real position, public revulsion would be readily understandable. The great bulk of the Israeli public can’t reconcile unilateral withdrawal from territory with harsh historical facts. They don’t have to go back to Arab rejection of a 2-state solution in 1947-48 (with Arab states launching a war of destruction), or the founding of the PLO in 1964 (dedicated to violently reclaiming all of Palestine even before Israel occupied an inch of the West Bank), or the 1967 Arab rejection of negotiations to resolve the fate of the newly conquered West Bank. Israelis recall the Palestinian rejections of statehood offers in 2000 at Camp David and in 2008. And they have an indelible recollection of the unilateral withdrawal from Gaza in 2005. That withdrawal was grounded on an expectation that Gaza’s residents would utilize the opportunity to peacefully self govern and would be deterred by Israeli military might from launching hostilities. That Gaza withdrawal instead engendered a violent takeover by Hamas (an entity dedicated to the violent destruction of Israel), imposition of harsh Sharia law, and the launching into Israel of many thousands of missiles wreaking such havoc on southern Israel’s civilian life that 3 military incursions have been necessary to try and quell those destructive barrages. A similar withdrawal from a “security strip” in southern Lebanon entailed Hezbollah’s further inroads into Lebanon and emplacement of rockets and missiles threatening Israel’s northern population.

Given these past traumas, it is no wonder that Israelis fear that facile concessions and/or unilateral withdrawal from the West Bank (Judea and Samaria) would have similar dangerous repercussions. Only this time the missiles would be launched from very short distances from Israel’s population concentrations. Add to the fear factor the recent advances of Islamic fundamentalism in nearby Syria, Iraq, and the Sinai desert. Consider also hostile Iran’s footholds in Israel’s environs – through Hezbollah’s emplacements in Lebanon and in the Syrian Golan.

Benjamin Netanyahu did make a concerted effort in the recent election campaign to play to Israelis’ security fears. He proclaimed that there would never be a Palestinian state “on his watch” and that he would take further steps to prevent such a development by building more of a Jewish presence in East Jerusalem. He shrilly condemned “anyone who moves to establish a Palestinian state today” as simply providing a launching pad for further attacks on Israel; he accused the left of burying their heads in the sand. Netanyahu warned that Arab voters were streaming to the polls, an alarm not so much racist as an effort to present a frightening specter flowing from the United Arab List’s preoccupation with Palestinian affairs rather than the welfare of Israel and its Arab citizens.

The impact of Netanyahu’s scare tactics actually fell primarily on the right-leaning part of the voting spectrum. The last pre-election public opinion polls showed the Zionist Union with 26 knesset seats versus 22 for the Likud. The possibility that the Zionist Union might outvote the Likud triggered Netanyahu’s frantic warnings. Following this end-stage scare campaign, the Likud ended up with 30 seats. The likelihood is that Netanyahu’s shrill rhetoric influenced right-leaning voters from the Bayit Yehudi (Naftali Bennett’s party) and Yachad (Eli Ishai’s party). They were impelled to vote for Netanyahu to reinforce his chances to garner the largest electoral bloc and thereby get the first chance to form a new governing coalition. Both Bayit Yehudi and Yachad ended up with fewer seats than indicated in the pre-election surveys.

Some evidence supports the thesis that the fear factor indeed moved voters toward Netanyahu. The geographical distribution of election results shows that in areas most affected by missile barrages – places like Shderot and Ashdod – the Likud outpolled the Zionist Union by a ratio of four or five to one.

A major irony of Netanyahu’s claims about the left’s willingness to give away the store is that the Zionist Union’s actual positions were attuned to Israel’s security concerns. Its platform expressed readiness to renew negotiations toward a 2-state solution, but with careful regard for Israel’s security needs. The platform includes provisions on demilitarization of any future Palestinian state, on disarmament of Hamas and other radical movements, and on preclusion of weaponry from Hezbollah. The only “concession” to the Palestinian side was willingness to freeze settlement building outside the blocs likely to be retained by Israel in any future 2-state deal. In short, the platform attended to security concerns while recognizing the warnings of many former heads of intelligence services and former generals that the biggest long-term threat to Israel’s wellbeing lies in absence of permanent resolution of Palestinian grievances.

The Zionist Union’s election campaign focused on domestic economic issues rather than frictions with the Palestinians. The downplay of peace prospects was understandable, given the Israeli public’s incredulity about Palestinian desire for a peaceful 2-state resolution. That doubt is grounded on the Palestinian Authority’s heralded rapprochements with Hamas and its increasingly bellicose rhetoric toward Israel.

With 20/20 hindsight, perhaps the better election strategy would have been to confront head-on the issue of negotiations with the Palestinians. The Zionist Union might have recycled Ariel Sharon’s 2005 speech at the United Nations, where he said:
The right of the Jewish people to the Land of Israel does not mean disregarding the rights of others in the land. The Palestinians will always be our neighbors. * * * They are also entitled to freedom and to a national, sovereign existence in a state of their own. * * * It is possible to reach a fair compromise and coexistence in good neighborly relations between Jews and Arabs. * * * [However,] there will be no compromise on the right of Israel to exist as a Jewish state, with defensible borders in full security without threats and terror.
Of course, Sharon then slipped up when he unilaterally withdrew from Gaza without any security arrangements. He gave away the store in that instance.

It is the unenviable task of Isaac Herzog, Tzipi Livni, and like-minded people on the center-left to persuade Israeli voters (and the major world powers) that the vision of peaceful coexistence of Israel and a Palestinian state is not pie in the sky. The center-left’s task is to reassure that Israel’s extension of a peaceful hand toward negotiations would be circumscribed by constant awareness of Israel’s security needs – that it won’t give away the West Bank store. It must show that the real obstruction to a peaceful, 2-state resolution is Palestinian enmity and resistance to recognizing Israel’s right to subsist with security for its population.

Right now, the center-left’s task looks like mission impossible. Who in the Israeli electorate will be convinced about negotiations when daily reports arrive about Hamas’ continued missile rearmament, tunnel digging, and rededication to the goal of destroying Israel, all while the Palestinian Authority pursues hostile confrontation in international forums? To generate a negotiated end to Israeli domination over 2.5 million West Bank Arabs, the U.S., Europe, and all interested foreign powers will have to exert their influence on the Palestinians, as well as the Israelis, to undertake good-faith negotiations toward a 2-state solution. Without significant changes in tone on both sides, the long-term peace prospects look dismal.