There is a flood of papers being published on new ways to diagnose Alzheimer disease before it is symptomatic, involving a combination of invasive tests , and pen and paper tests. This changes the landscape with respect to genetic tests for risk of AD, making rational suicide a much more feasible option. Before the availability of these presymptomatic tests, even someone with a high risk of developing AD could not know if and when the disease was approaching. One could lose (...) years of good life by committing suicide too soon, or risk waiting until it was too late and dementia had already sapped one of the ability to form and carry out a plan. One can now put together what one knows about one's risk, with continuing surveillance via these clinical tests, and have a good strategy for planning one's suicide before one becomes demented. This has implications for how these genetic and clinical tests are marketed and deployed, and the language one uses to speak about them. The phrase ‘there is nothing one can do’ is insulting and disrespectful of the planned suicide option, as is the language of the Risk Evaluation and Education for Alzheimer's Disease studies and others that conclude that it is ‘safe’ to tell subjects their risk status for AD. Further, the argument put forward by some researchers that presymptomatic testing should remain within research protocols, and the results not shared with subjects until such time as treatments become available, disrespects the autonomy of people at high risk who consider suicide an option. (shrink)

Developing a reasonable approach to the medical care of older people with dementia will be essential in the coming decades. Physicians are the locus of decision making for persons with dementia. It is the responsibility of the physician to assure that the surrogate understands the nature and trajectory of the disease and then to elicit the desired goal of care. Physicians need to ascertain whether any advance directives are available, and if so, whether they apply to the situation of advanced (...) dementia. Finally, physicians should help surrogates understand how the goals of care are best translated into practice. When the goal is comfort, this is achieved by assuring dignity, minimizing suffering, and promoting caring. In general, comfort should be the default goal of care, best implemented through palliative care or hospice. (shrink)

Volume 20, Issue 8, August 2020, Page 78-79.

This essay explores three issues in respect for autonomy that pose unfinished business for the concept. By this, I mean that the dialogue over them is ongoing and essentially unresolved. These are: whether we ought to respect persons or their autonomous choices; the role of relational autonomy; and whether nonhuman animals can be autonomous. In attending to this particular set of unfinished business, I highlight some critical moral work left aside by the concept of respect for autonomy as understood in (...) Beauchamp and Childress’ Principles of Biomedical Ethics. Specifically, while significant pragmatic traction is gained by the authors’ focus on autonomous choice, carving such a focus out from the broader questions of moral respect and the autonomy of the person leaves aside a number of questions that we might have thought a view about respect for autonomy in biomedicine ought to answer. These include: How should physicians respond when autonomous patients make decisions that appear nonautonomous? What is the impact of the view that autonomy is “relational” for cross-cultural differences in how autonomy is respected? If chimpanzees can be autonomous, what does that mean for how they should be treated? (shrink)

As medical technology becomes more sophisticate the ability to manipulate nature and manage disease forces the dilemma of when can becomes ought. Indeed, most bioethical discourse is framed in terms of balancing the values and interests and the benefits and burdens that inform principled decisions about how, when, and whether interventions should occur. Yet, despite advances in science and technology, one caregiver mandate remains as constant and compelling as it was for the earliest shaman—the relief of pain. Even when cure (...) is impossible, the physician's duty of care includes palliation. Moreover, the centrality of this obligation is both unquestioned and universal, transcending time and cultural boundaries.Although universally acknowledged, pain is a complex phenomenon for both the patient and the caregiver, influenced as much by personal values and cultural traditions as by physiological injury and disease. (shrink)

In this article, I argue that lawmakers must abandon their previous reluctance to engage with questions of personal identity (PI). While frequently seen as an esoteric subject, of limited interest outside of academic philosophy departments, I attempt to show that, in fact, assumptions about PI—and its durability in the face of certain psychological or genetic changes—underpin many current legal rules. This is most perhaps obviously exemplified with regard to reproductive technologies. Yet the Parfitian challenge to identify a victim of ‘bad’ (...) reproductive choices has been largely overlooked in framing legislative responses to such technologies. Furthermore, I argue, it is not only with regard to emerging technologies that questionable assumptions about PI play a role; legal responses to questions about the attribution of criminal responsibility, and about the treatment of demented or brain-injured people, necessitate a frank engagement with such questions. It may be, however, that a multi-faceted approach to PI, which takes account of genetic, psychological and social factors—will prove a better fit for the myriad needs of the legal system than any sort of ‘unified theory of identity’. (shrink)

In this issue, Paul Menzel and M. Colette Chandler‐Cramer propose a novel advance directive. Besides giving competent people the opportunity to refuse future life‐prolonging medical interventions, they say, advance directives should give people the opportunity to refuse ordinary food and water if they later experience severe dementia.This proposal is both appealing and unsettling. It is appealing because it offers some relief to people seeking to avoid the prolonged decline and extreme incapacity they have witnessed in relatives and friends with advanced (...) dementia. But does it sufficiently protect patients? Menzel and Chandler‐Cramer want to empower competent persons to impose potential discomfort and distress on a later self who cannot understand the reasons for that choice. In this situation, the price of respecting autonomy is paid by a frail incapacitated patient who has no idea why food and water are no longer offered to her. (shrink)