University of Maryland, Baltimore



Charm City Colloquium “Ticket”Dena S Davis, Lehigh UniversityTITLE: Why advance directives won’t help you avoid Alzheimer’sSome Alzheimer’s facts. Nearly 6 million Americans currently have Alzheimer’s Disease (AD). By 2050, we expect that number to rise to 14 million. More than 15 million Americans provide billions of hours of unpaid care every year, to people with AD or other dementias. The average time between diagnosis and death is eight years.A significant segment of Americans would prefer to have shorter lives without dementia than longer lives that include dementia. There seem to be two ways to accomplish this desire: first, one may hope to die before getting dementia, or, second, to accept that one may get dementia, but hope that one’s life after the onset of dementia is as short as possible. How does our current patchwork of laws governing advance directives and medical aid in dying aid us in carrying out these desires? I believe they aid hardly at all, and that therefore a reasonable response to fear of impending dementia is suicide. In fact, if one is a reasonably healthy person with a family history of longevity who strongly desires to avoid a long period of dementia, preemptive suicide may be the only practical strategy.Caveat: Advance directives may well be helpful in shortening the very last stage of AD (AD is usually thought of as having seven stages, not counting the preclinical stage). The final stage is characterized by inability to speak or communicate, inability to walk or feed oneself. This stage lasts an average of two and a half years. At the end of this stage, when a person shows no interest in food or is unable to swallow, a directive might well be helpful in avoiding, e.g., the use of a feeding tube (which has been shown not to prolong life in any case). However, when we investigate why people fear dementia, and would prefer to die rather than experience it, we see the same themes:People wish to conserve resources for family or charitable projects;People fear loss of dignity (e.g., incontinence);People don’t want to burden family members with their care (a realistic concern, as caring for people with dementia can break up marriages, disrupt careers, and lead to old age impoverishment for people [mostly women] who drop out of the work force to care for family members)People fear loss of independence and autonomy (e.g. having to live in a nursing home);People fear loss of self –this is a disease that “sucks out one’s soul”Therefore, if one considers the full course of Alzheimer’s Disease, one readily sees that these interests are defeated long before people reach the final stage. Thus, directives that would “kick in” only at the final stage, really do not address people’s concerns about AD.Therefore, we need to think about strategies that avoid not only the final stages, but the middle stages as well, i.e., any stage in which a person is no longer able to function independently. One strategy would be to end one’s life at the earliest diagnosis of AD, trusting that one still had the executive function and operational memory to carry out one’s plan (while likely having to hide one’s intentions from others). However, many people would prefer not to lose good years in which they could still enjoy their families, live somewhat independently, pursue their hobbies, etc. “Just like Cinderella, everyone wants to wait until the last possible moment before they leave the party - until five to midnight.” People whose primary goal is to avoid moderate or severe dementia would, of course, be best off in a legal regime which allowed euthanasia for dementia on the basis of an advance directive, a direction in which Belgium may be moving. But that is impossible to imagine in the United States.Therefore, a possible compromise might be for people to forgo suicide at the first sign of dementia, and to gamble instead on a strong advance directive to have their lives end at the earliest possible moment after certain criteria have been reached (e.g., no longer recognizing family members). If one could rely on such a directive, one might be willing to prolong one’s life. Sadly, that is not a solution, for the following reasons: An advance directive can only direct one’s proxy to withhold an intervention (e.g., antibiotics for pneumonia) but not to affirmatively hasten one’s death. Some people live for many years with a healthy body but a deteriorating brain, so the directive is not helpful.The problem of precedent autonomy. Imagine the following scenarios:Scenario AMs. Snyder is 90 years old, diagnosed with Alzheimer’s Disease, and has lived in a nursing home for the last five years. She had been a journalist, and could often be seen on television news, as she reported from some of the world’s most dangerous “hot spots.” Ms. Snyder fought to stay in her home as long as possible, but as her dementia progressed, her nephew Larry intervened and arranged the nursing home placement. Before dementia struck, Ms. Snyder had written a detailed advance directive, naming Larry as her proxy. She stated clearly that if she were ever to become cognitively compromised or unable to live independently, she wanted her death to occur as soon as possible. She gave examples, such as not receiving antibiotics should she contract pneumonia.Ms. Snyder took some months to adjust to the nursing home, but she eventually settled in quite well. She is not in pain, and enjoys the food. She likes the staff, and often smiles at them and strokes their arms. She especially enjoys the music sessions, where she claps in time. One day Larry showed her a clip of herself on television, and she showed no recognition that that intrepid reporter was her younger self.Now Ms. Snyder has come down with pneumonia. Larry reminds the staff that, by the terms of her directive, she should be given no antibiotics, comfort care only. He feels a bit uncomfortable about this, because he appreciates that her current life is quite a pleasant one, but he is sustained in his course of action by his decades of memories of his fiercely independent aunt, and by the promises he made when he agreed to be her proxy. The nursing staff and caregivers are outraged by Larry’s refusal. They have no experience of the independent, younger Ms. Snyder, but they do have five years’ experience of this pleasant woman, clearly enjoying her life and making personal connections. Were Larry refusing a burdensome therapy they would understand, but a simple antibiotic? They are sure that the present Ms. Snyder would prefer to go on living, and that their professional and moral duty is to support her health. When a temporary physician takes over the night shift, they simply tell him that Ms. Snyder has symptoms of pneumonia, and request that he order an antibiotic. Ms. Snyder recovers, and lives two more years until dying of a stroke. Scenario B:In a 2018 essay in The Hastings Center Report, Norman Cantor describes his deep aversion to the possibility of prolonged dementia, and reproduces a portion of his advance directive that he believes will guard against this possibility. In addition to refusing all medical intervention to prolong his life should he become demented, he also addresses food and liquids. “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. . . . I do not want to be cajoled, harassed, or in any way impelled to eat or drink. If I appear receptive to eating and drinking (show signs of enjoyment or positive anticipation), so that I would be agitated or upset by non-feeding, I authorize sedation to relieve that upset. . . .” In other words, Professor Cantor is asking his partner and caregivers to refuse him food even if he “shows signs of enjoyment,” sedating him if necessary so that he does not continue to ask for the chocolate ice cream.Scenarios like these have been discussed at great length in the bioethics literature. Rebecca Dresser and John Robertson argue that we should pay less attention to “what the patient would have wanted were she still competent to tell us,” and more attention to the interests of the patient as she currently is. Dresser would give Ms. Snyder the antibiotic, because Ms. Snyder is enjoying her life and therefore has interests in continuing to live. She would also probably insist on feeding Professor Cantor, as long as he was enjoying his food. Scholars such as Dena Davis, Ronald Dworkin, Bonnie Steinbock, and Nancy Rhoden have argued against this view and in favor of precedent autonomy, on various philosophical grounds. I will not revisit these philosophical arguments here. Suffice it to say that as long as the law and the ethics of precedent autonomy are unsettled, one could not allow oneself to slide into dementia with any confidence that one’s wishes would be followed. The problem of caregivers’ moral distress. Moral distress occurs when a person knows the course of action she believes she ought to take, but is constrained from doing the right thing—or forced to do the wrong thing—by legal, institutional, financial or other obstacles. Moral distress can cause acute discomfort, leading to burnout, lack of job satisfaction, physical symptoms, and even PTSD. Just as it is prima facie wrong to cause physical distress to others, it is prima facie wrong to cause moral distress. After all, moral distress stems from the sufferer’s sincere desire to do the right thing. Avoiding moral distress is an important ethical goal, not only because we should always attempt to avoid suffering, but because it seems especially wrong to inflict suffering based on the other person’s conscience. Caregivers who have known only the demented Ms. Snyder or Prof. Cantor, and who see that they are enjoying their lives or asking for the chocolate ice cream, are likely to experience extreme moral distress when directed to cease feeding or withhold antibiotics. Their jobs, after all, their professional responsibilities, are to care for patients and to support their well-being in the here and now. Caregiver moral distress not only presents ethical problems to those who write the directives but it also presents practical problems: can we expect that caregivers will override their moral distress (and societal pressure) to obey our advance directives when we are no longer “present” to fight for ourselves? I suspect not.Thus it appears that, in the present legal regime in America, only pre-emptive suicide can confidently allow us to avoid a prolonged decline with dementia. ................
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