The Ethics of Euthanasia in Cases of Lost "Identity": Alzheimer's, Dementia, and Self-Direction
As the methods and practices of Western medicine become more powerful, more able to correct disease and more able to foresee disease even when it cannot be prevented or corrected, the ethical complications and implications of these capabilities become ever greater themselves. The ethics of genetic testing for disease, for example, or the assignation of percentages of risk to various factors for the development of specific diseases or disorders, present major problems for doctors and researchers, especially given the current volatility of the healthcare and insurance industries. There are also many ethical questions that have come increasingly to the foreground in recent decades concerning end-of-life issues, and the ability for individuals to make healthcare choices in these times.
End-of-life care issues are quite ethically complex even in the simplest of healthcare cases. Deciding to treat an illness aggressively might prolong life but greatly reduce the quality of life, and in many cases family members and individual patients themselves have differences of opinion on which course of treatment is better. More complex still are cases where terminal illness is known to progress to a painful and quality-of-life reducing end phase, when patients might desire medical assistance in taking their own life rather than in waiting to die more slowly and painfully. The question of whether or not patients have this right, or whether the medical community can ethically assist them, is a matter of great debate.
To complicate this issue still further, the concept of identity often comes into play in terminal illnesses that are cognitive or neurological in nature. In diseases like Alzheimer's, in which a deterioration of the brain causes loss of memory, often severe cognitive impairment, and a loss of the ability to care for oneself, self-directed and medically assisted death -- voluntary euthanasia, in other words -- may often seem preferable to individuals even before the illness has reached its truly terminal stages. "Identity" is not a concept that can be easily identified, and in fact will doubtless have a different meaning for every individual that uses the term. Respecting this sense of identity, however, and allowing individuals to choose when to die as an alternative for outliving their own sense of identity, might be the new ethical standard that should be kept by the medical community.
This paper examines several recent studies involving Alzheimer's and other forms of dementia in terms of their impact on an individual's sense of identity, and both the ethical and the medical implications of this loss of identity as a result of terminal and irreversible illness. There are, of course, widely different perspectives on this issue, and very different and opposing conclusions that have been reached by physicians, theorists, and lay individuals alike in regards to the idea of euthanasia generally and euthanasia as a response to forms of dementia and identity loss at the end stages of life. These varying perspectives and conclusions will be presented here not in the hopes of reaching a conclusion on this issue, but rather with the aim to outline current arguments and provide a clear avenue for further discussion.
Keeping the Self: Arguments in Favor of Euthanasia
The argument of whether or not it is acceptable for individuals to choose to die should they develop signs of dementia, especially before they even reach the dementia stage of their disease, is not simply an academic issue. There are already a number of patients who have left advance euthanasia instructions in anticipation of the their degradation into full-blown dementia and a loss of their sense of self (Lepelaire & Gastmandes 2010). Discussions with some patients who have left these instructions has provided a great degree of insight into the specific personal and ethical issues that are involved in the discussion making process in these circumstances (Lepelaire & Gastmandes 2010). Though these conversations do not provide a clear consensus or singular conclusion regarding the ethicality of euthanasia practices and advanced euthanasia directives in the face of impending dementia, the discussion cover a range of issues pertinent to the problem.
Most prominent in the decision to leave an advance euthanasia directive was the sense of self-direction, and the retention of the ability to make decisions for oneself (Lepelaire & Gastmandes 2010). Relaince on the advice of medical personnel was also instrumental in the decision making process of many individuals, though this advice was often indirect in terms of contemplating euthanasia (Lepelaire & Gastmandes 2010). Still, it is clear that professionals in the medical community have an ethical imperative to discuss such issues with their patients, regardless of how their conclusions regarding the issue.
Despite the fact that these advance euthanasia directives have existed in several countries for many years, notably in the Netherlands and Belgium, few if any studies have been conducted that take a broad view of these cases as a collective (Hertogh et al. 2007). The taboo nature of this discussion in many cultures and countries has prevented extensive research into the issue, and yet the medical and ethical urgency of the issue has not been diminished but is rather made even sharper due to this continued avoidance of the topic. Discussions between physicians and their patients in early stages of dementia or dementia-causing diseases regarding end-of-life issues are generally lacking in both quantity and quality, according to at least one study, and requests for euthanasia following an Alzheimer's or dementia diagnosis do not appear in high enough numbers among the general population when the findings of certain studies are extrapolated out (Hertogh et al. 2007). This suggests that people are not aware of the option, and though this is in part due to the continued controversy of the issue many physicians and ethicists feel that the choice ought to at least be presented to individuals, especially in situations where the practice has been legalized by national laws and is a part of established medical procedure (Hertogh et al. 2007).
Providing information regarding advanced euthanasia directives to patients is the only way to achieve an ethical decision in care, according to this argument (Hertogh et al. 2007). People must be given the opportunity to choose their own standard of ethics, and this cannot happen unless full information is provided by trusted medical advisors and professionals.
The pure ethics of the issue have recently come to the foreground of medical debates surrounding euthanasia in recent decades, but questions regarding the worth of happiness and the value of life are far from recent ethical considerations. Certain ethicists have employed concepts from ancient Greek philosophy to the modern issue of euthanasia, concluding that eudaimonia, or the concept of a "happy life" or happiness across one's life, is lost if there is a period of life prior to death that is so unbearable it leads to a request for death (Shaw 2009). The fact that some diseases progress to the point where death becomes desirable, that is, means that individuals suffering from these diseases in their end stages cannot possibly have a truly fulfilling and happy life, according to this philosophical stance (Shaw 2009).
This might at first seem to constitute an argument against the practice of euthanasia, but this theorist actually demonstrates that if the concept of eudemonia is accepted as he defines it, and is considered to be a worthy pursuit, than euthanasia must be allowed precisely in advance and pre-emptive directives in order to allow for death prior to the intolerability of a disease's final stages (Shaw 2009). Again, the decision must ultimately hinge upon personal choice, with the definition of dementia and the timing of the euthanasia dictated by the patient, without succumbing to nature's progression in death when liberal latitude is permitted to counter nature during the course of one's life (Shaw 2009). This argument is not, of course, accepted by everyone, but it is profoundly influential the logic of its argument regarding the timing of the euthanasia and the making of a directive.
Preserving the Sanctity of Life: Arguments Limiting the Practice of Euthanasia
In direct opposition to the argument presented by Shaw (2009), a certain Christian-based ethical perspective (though no single perspective could ever be considered the definitive "Christian" perspective) insists that life itself is an intrinsic good, and is arguably the intrinsic human good, such that the preservation of life at all costs is a moral and ethical imperative (Paterson 2003). In this view, there are no conditions that would make life so unbearable as to warrant the termination of that life, especially not by taking active steps towards death like euthanasia (Paterson 2003). As no circumstances could exist that would warrant death coming before nature (or God) would cause it to occur, euthanasia in any circumstance becomes automatically immoral and unethical and therefore it is certainly not something that needs to be discussed with patients under this framework (Paterson 2003).
The author of this article acknowledges that the argument is imperfect, and fails to take into account…