A legal and moral analysis of medical decision making on behalf of those with such severe cognitive impairments that they cannot exercise self-determination. In this book, Norman Cantor analyzes the legal and moral status of people with profound mental disabilities—those with extreme cognitive impairments that prevent their exercise of medical self-determination. He proposes a legal and moral framework for surrogate medical decision making on their behalf. The issues Cantor explores will be of interest to professionals in law, medicine, psychology, philosophy, and ethics, as well as to parents, guardians, and health care providers who face perplexing issues in the context of surrogate medical decision making. The profoundly mentally disabled are thought by some moral philosophers to lack the minimum cognitive ability for personhood. Countering this position, Cantor advances both theoretical and practical arguments for according them full legal and moral status. He also argues that the concept of intrinsic human dignity should have an integral role in shaping the bounds of surrogate decision making. Thus, he claims, while profoundly mentally disabled persons are not entitled to make their own medical decisions, respect for intrinsic human dignity dictates their right to have a conscientious surrogate make medical decisions on their behalf. Cantor discusses the criteria that bind such surrogates. He asserts, contrary to popular wisdom, that the best interests of the disabled person are not always the determinative standard: the interests of family or others can sometimes be considered. Surrogates may even, consistent with the intrinsic human dignity standard, sometimes authorize tissue donation or participation in nontherapeutic medical research by profoundly disabled persons. Intrinsic human dignity limits the occasions for such decisions and dictates close attention to the preferences and feelings of the profoundly disabled persons themselves. Cantor also analyzes the underlying philosophical rationale that makes these decision-making criteria consistent with law and morals.
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.
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 (perhaps even a certainty) 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.
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