I am obsessed with avoiding severe dementia. As a person who has always valued intellectual function, the prospect of lingering in a dysfunctional cognitive state is distasteful — an intolerable indignity. For me, such mental debilitation soils the remembrances to be left with my survivors and undermines the life narrative as a vibrant, thinking, and articulate figure that I assiduously cultivated. (Burdening others is also a distasteful prospect, but it is the vision of intolerable indignity that drives my planning of how to respond to a diagnosis of progressive dementia such as Alzheimers).
My initial plan was to engineer my own demise while still competent to do so. My sketch of methodologies and my preferred course (stopping eating and drinking) appear at: http://blogs.law.harvard.edu/billofhealth/2015/04/16/my-plan-to-avoid-the-ravages-of-extreme-dementia/. The obvious hazard in that plan is cutting short a still vibrant and satisfactory existence.
An alternative strategy would be to allow myself to decline into incompetency, but beforehand to dictate, in an advance directive, rejection of future life-sustaining medical interventions. This strategy would probably work as applied to serious maladies such as kidney disease, lethal cancer, or congestive heart failure. The disturbing issue then becomes timing. The onset of such serious maladies is fortuitous and years of lingering in dementia might precede my demise.
A further alternative would be to seek to accelerate my post-competence demise by declining not only major medical interventions such as mechanical respirators or dialysis, but also more simplistic items like antibiotics, antiarrhythmics, and artificial nutrition and hydration. My envisioned scenario is that infection would occur early (via urinary tract, skin, or pneumonia) and that this condition, left untreated, would precipitate my death. (My advance instructions would allow palliative but not curative measures.)
This effort to precipitate the early death of my future incompetent persona has austere implications. While some deeply demented patients experience considerable distress (anxiety, confusion, combativeness, or depression), others weather the mental decline in a calm, even-tempered fashion. My demented self might be in the latter category. And while I define a deeply demented status as intolerably undignified, my future persona may well have forgotten that driving principle and may be experiencing a placid existence that he ostensibly wishes to continue. In that scenario, my directive is seeking to engineer the death of an uncomprehending, non-suffering person who wants to live.
Can I expect my advance instructions to withhold simplistic medical means like antibiotics to be implemented? There are several practical hurdles in the way. Will my designated health care agent have the necessary dedication to carry out my unorthodox advance dictates? Will the health care personnel surrounding my future persona be willing to withhold basic care that they would normally administer as a matter of course? Won’t some of them have conscientious objections to carrying out my advance instructions? Won’t some of them invoke “professional norms” dictating continuing care even in the face of previously expressed patient rejection of care? These questions deserve serious inquiry, but there is little point in pursuing those inquiries if it is intrinsically immoral for a competent person (myself drafting an advance directive) to dictate the death of a debilitated future persona who is still getting some satisfaction from life and who no longer understands the dignity principles at stake. Hence this blog piece focusing on the morality of my proposed escape from dementia via advance rejection of even simplistic life-extending care.
One morality issue relates to the identity of the affected patient. A possible claim is that my future demented self (with little memory of my competent self) is a new and different person. To give my competent persona dominion over the value system and medical fate of a “different person” seems, at first blush, dubious. Only at first blush. While a demented self may have a very different character, personality, and memory set than a prior competent self, the medical course actually involves the same 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 would argue) the same principles as its competent predecessor. Not surprisingly, then, American law and culture commonly recognize a competent person’s dominion over a future persona. A prerogative to bind a future self’s fate is acknowledged in contracts, disposition of property, and trust law. (Not to mention testamentary dispositions.) Most importantly, precedent or prospective autonomy is widely upheld in the context of advance medical directives (hereinafter AD).
In virtually every state, legislation (relating to living wills and/or durable powers of attorney) authorizes a competent person to shape post-competence medical intervention in a fashion consistent with the person’s preferences regarding a worthwhile quality of life. Such legislation’s “specific purpose is to allow an earlier competent self to speak for a later incompetent self.” [B. Rich, 6 Cambridge Q. H.C. Ethics, at 140]. Relevant quality of life factors encompass diverse elements including physical or emotional suffering, intolerable indignity associated with physical or mental decline, burdensome bodily invasions, and burdens on surrounding family and caregivers. Such factors surely include the indignity associated with severe dementia, as signaled in the common statutory sensitivity to a permanently vegetative state.
Considerable case law at the state and federal levels also supports future-oriented autonomy for a person seeking to shape his or her post-competence medical fate. Courts started by recognizing the entitlement of a competent patient to invoke rights of self-determination and bodily integrity in order to reject even life-sustaining medical intervention. Courts proceeded to recognize a person’s prerogative to preserve prospective bodily integrity and self-determination by issuing considered instructions governing post-competence medical interventions. For example, in Cruzan in 1990 (a case involving medical handling of a permanently unconscious patient), the U.S. Supreme Court justices all assumed that if the patient, while competent, had clearly articulated her preferences for post-competence medical handling, those prior choices would be honored. State courts commonly view advance expressions as the appropriate means to project a now-incompetent patient’s autonomy rights into the post-competence setting. The prevailing substituted judgment approach charges surrogate decision makers with determining and implementing what the now-incompetent patient would have wanted – a task easily accomplished where the patient’s wishes have been spelled out in an AD. In short, the jurisprudence of death and dying refutes any notion that advance directives should not control the medical fate of a now-demented patient, even if that patient is in some sense a different person.
Rebecca Dresser makes a different moral argument against implementing an AD that would withhold life support from a non-suffering, apparently content demented patient. For her, it is unethical or immoral to harm a helpless patient who no longer remembers the values and principles that underlay the AD. The contemporaneous well being of the demented patient should prevail, she says, even against carefully considered prior choices to reject life-sustaining interventions at the juncture now reached. [Dresser, 81 Tex. L. Rev. at 1840, 1846].
A few commentators adopt a variation of Dresser’s position. They urge a balancing approach in determining whether to implement an AD’s apparent dictate to withhold life support from a demented patient. The now-demented patient’s current experiential interests – in some level of enjoyment of life – might then be deemed to outweigh the previously expressed aversion to continued life in the debilitated status now at hand. [Menzel, 58 N.Y. L. Sch. L Rev. at 341-44; Menzel & Steinbock, 41 J. L., Med. & Ethics at 495-96]. For these commentators, morality demands some accommodation to the well being of the demented patient.
I strenuously disagree that morality demands elevating a demented patient’s well being over prior AD instructions. Dresser’s position derogates the values and preferences expressed even in clear, considered AD’s. For her, the previously expressed dignity concerns are meaningless for a demented patient who has forgotten any dignity-based aversion to deep dementia. Contemporaneous well being, she asserts, is all that really matters for that patient.
I suggest that while a demented persona no longer recalls the values underlying the AD and cannot now be offended by breaches of value-based instructions, those considered instructions are still worthy of respect. As noted, the well established mechanism — an AD – is intended to enable a person to govern the medical handling of their future demented self. And the values and principles underlying advance instructions can certainly include factors beyond the patient’s contemporaneous well being.
There are multiple examples of personal values that might warrant an AD’s determination to override a demented self’s subsistence and even contentment in a demented state. One example is religious principle. Consider a dedicated Christian Scientist or a Jehovah’s Witness whose AD clearly rejects medical interventions violative of the patient’s religious precepts. Shouldn’t those precepts prevail even if the demented patient no longer recalls the underlying religious principles and is currently experiencing a placid, albeit mentally debilitated, existence? Notice also that law and practice would give meaningful consideration to a now-incompetent patient’s faith-based AD instructions to employ all available life-extending means even in the face of the patient’s deterioration to a permanently unconscious or other gravely debilitated state. That is, a patient’s vitalist philosophy, as expressed in an AD, might prevail even though inconsistent with the patient’s contemporaneous best interests. To offer a rough analogy regarding post-competence vitality of personal values: if a strong religious belief in marital fidelity had inspired an AD dictating no post-competence sexual liaisons, shouldn’t that value-based choice prevail against the now-incompetent, demented patient’s effort to establish a pleasing sexual relation with a non-marital party in a nursing home?
Another personal value that might prevail under an AD is altruism. An AD’s instruction not to initiate a life-extending procedure like dialysis might well be grounded on a desire to spare surrounding loved ones from physical, emotional, or economic burdens, or to avoid a financial drain depleting the assets to be left to survivors. An altruistically motivated advance rejection of dialysis ought to be respected, I would argue, even as applied to a demented patient still extracting some satisfaction from their debilitated existence.
An AD can also be upheld where it reflects the competent persona’s definition of an intolerably undignified level of mental function. For example, deference to the patient’s conception of indignity helps explain willingness to implement an AD rejecting medical preservation in a permanently unconscious state. Avoidance of a personally degraded status can be integral to a person’s life narrative and her effort to shape the image and remembrances left with survivors. At least where the competent drafter of an AD understood that their future persona might be contented in a deeply demented existence and still defined that demented status as intolerably undignified, the drafter’s preference for an accelerated death via withholding of medical intervention ought to be respected. That is exactly my posture in rejecting all life-extending medical intervention, even simplistic steps like antibiotics, in order to preclude lingering in a post-competence demented state.
The preceding argumentation establishes the morality of implementing advance instructions to forgo medical intervention for a now-demented patient who is ostensibly contented and who no longer recalls the personal values underlying the AD. The foundation for that moral framework is solid. A person, by nurturing and developing a body, character, and relationships has earned a prerogative to shape a life narrative – including the medical fate of a succeeding, incompetent persona.
To say that my preference for accelerating my post-competence demise is morally sustainable does not mean that my AD choices will be implemented in fact. As suggested earlier, there are potential hurdles in the compunctions, hesitations, and constraints of the people managing my post-competence medical care. Those people include my designated surrogate decision maker as well as the caregivers ultimately surrounding my post-competence self. Discussion of conscientious objections and professional constraints in implementing my rejection of antibiotics is still to come. Stay tuned to this channel!