Almost all jurisdictions where physician-assisted death is legal require that the requesting individual be competent to make medical decisions at time of assistance. The requirement of contemporary competence is intended to ensure that PAD is limited to people who really want to die and have the cognitive ability to make a final choice of such enormous import. Along with terminal illness, defined as prognosis of death within six months, contemporary competence is regarded as an important safeguard against mistake and abuse, (...) arguably the strongest objections to legalizing PAD.The insistence on contemporary competence is problematic. It means that someone who has dementia is ruled out as a candidate for PAD, even if she is terminally ill and suffering terrible and unrelievable pain. It also rules out individuals with strong and unwavering desires not to end their life in dementia. (shrink)

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)

In pursuit of the dream that patients' exercise of autonomy could extend beyond their span of competence, living wills have passed from controversy to conventional wisdom, to widely promoted policy. But the policy has not produced results, and should be abandoned.

Some people will confront Alzheimer's with a measure of resignation, a determination to struggle against the progressive debilitation and to extract whatever comforts and benefits they can from their remaining existence. They are entitled to pursue that resolute path. For other people, like myself, protracted maintenance during progressive cognitive dysfunction and helplessness is an intolerably degrading prospect. The critical question for those of us seeking to avoid protracted dementia is how best to accomplish that objective.One strategy is to engineer one's (...) own death while still mentally competent to do so (even in the stage of mild dementia). If I were to use a preemptive strategy in the face of a dementia diagnosis, I would probably choose to stop eating and drinking, a process known as voluntarily stopping eating and drinking. An alternative tactic for avoiding prolonged dementia would be to allow oneself to decline into moderate dementia—thus losing capacity to perform self‐deliverance or even to make serious medical decisions—but before getting to that point to provide advance instructions rejecting prospective life‐sustaining medical interventions. These advance instructions would authorize palliative but not curative measures. My current personal instructions define the point of intolerable cognitive decline triggering medical nonintervention as “mental deterioration to a point when I can no longer read and understand written material such as a newspaper or financial records such as a checkbook.” These instructions dictate allowing my demise at a point of moderate dementia when I may not be perceptibly suffering, when I may still be getting some rudimentary satisfaction from my debilitated life, and when I no longer recall the preoccupation with personally intolerable indignity that motivated my instructions. Can I expect that my advance instructions will be implemented in those circumstances? Is it lawful, and is it moral for a surrogate decision‐maker and associated caregivers to allow an uncomprehending, ostensibly content but demented individual to die? My analysis herein contends that it is not only lawful and moral but also legally required to implement clear, considered advance instructions even at a stage of moderate dementia. (shrink)

Ever since the 1960s, when medical science became capable of prolonging the dying process beyond bounds that many patients would find acceptable, people have sought “death with dignity,” or “a natural death,” or “a good death.” Once debilitation from a fatal affliction has reached a personally intolerable point, dying patients have sought to control the manner and timing of death via diverse techniques. Some sought the disconnection of life-sustaining medical interventions, such as respirators and dialysis machines. Beyond freedom from unwelcome (...) interventions, some patients intent on avoiding suffering sought access to pain relief medication—even in dosages posing some risk of hastening death. Other dying patients sought access to deep sedation, even knowing that they would never emerge from the resultant unconsciousness. Still other patients voluntarily refused to eat or drink or to accept artificial nutrition and hydration. (shrink)