Making Medical Decisions for the Profoundly Mentally Disabled

Abstract

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.

Clarifying the best interests standard: the elaborative and enumerative strategies in public policy-making

“…However, the elaborative and enumerative strategies are nevertheless two distinct approaches which have been taken while clarifying the best interests standard. iii Specifically, their main difference lies in how they address the ‘inescapable perplexity, ambiguity, ignorance, uncertainty, and conflict’8 in weighing factors as varied as ‘physical and mental suffering, chances of recovery, the nature of the patients’ interactions with his or her environment, the potential for a regaining of function, and indignity’ (at 104) 9. As will become clearer later, this distinction is important once we consider the question of which strategy the state may viably adopt.…”

“…From his analyses of the values embedded (implicitly or explicitly) in the public sphere—including constitutional jurisprudence (at 118–119),9 and majority opinion (at 121–125)9—Cantor proposes that the idea of intrinsic human dignity should feature as the crucial consideration in best interests decisions. Intrinsic human dignity refers to the ‘basic respect to which every human being is entitled, regardless of cognitive capacity’, and serves as an ‘ultimate constraint’ on the ways we can treat each other.…”

“…Intrinsic human dignity refers to the ‘basic respect to which every human being is entitled, regardless of cognitive capacity’, and serves as an ‘ultimate constraint’ on the ways we can treat each other. An integral part of this consists in freedom from degrading treatment—applicable even where a patient may be incognisant or dying (at 30, 117) 9. According to Cantor, this dignity is violated in cases of permanent unconsciousness—in which the patient is unable to relate to and interact with others or the environment, nor experience any of the pleasures (and presumably pains) associated with human existence (at 122), and in which the patient is reduced to a ‘passive object of bodily invasions and manipulations’ (at 39) 8.…”

“…According to Cantor, this dignity is violated in cases of permanent unconsciousness—in which the patient is unable to relate to and interact with others or the environment, nor experience any of the pleasures (and presumably pains) associated with human existence (at 122), and in which the patient is reduced to a ‘passive object of bodily invasions and manipulations’ (at 39) 8. In this way, permanent unconsciousness stands out as one circumstance which is ‘so intrinsically demeaning that the dignity interest alone …would justify removal of life support’ (at 122, our emphasis) 9. This is the specific clarificatory pay-off: in this specific scenario, there is no indeterminacy.…”

“…Returning to the main course: suppose the state adopts Cantor's position viii that intrinsic human dignity is violated in permanent consciousness, and that the removal of life support from a permanently unconscious patient is mandatory (at 127) 9. In doing so, the state adopts an elaborative approach to human dignity, committing to one meaning of dignity which is then used to constrain other actions involving dignity.…”