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.


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