Books by Rutgers Faculty
Medical decision making on behalf of the mentally disabled
Archived article from Oct 24, 2005
By Carla Cantor
In 1971, Norman L. Cantor, professor of law and Justice Nathan L. Jacobs Scholar at the School of Law-Newark, became interested in a case in which a young woman, a Jehovah’s Witness, was severely injured and rendered unconscious in an auto accident. The woman desperately needed a blood transfusion, an action that would fly in the face of her articulated religious beliefs. The New Jersey Supreme Court ruled that the critical transfusion could be given even though it was against her wishes.
“I thought that the court was wrong to go against the patient’s clear beliefs and preferences,” says Cantor, whose ensuing article asserting a patient’s constitutional entitlement to decline life-sustaining medical treatment became one of the first published pieces on self-determination in end-of-life decision making. A few years later Cantor served as an informal adviser to counsel for the family of Karen Ann Quinlan, a young woman in a permanently unconscious state. The case became a milestone in right-to-die jurisprudence.
Those experiences prompted Cantor’s interest in the legal and ethical aspects of death and dying. He has explored the topic in law review and medical journal articles, as well as in two books – “Legal Frontiers of Death and Dying” (1987) and “Advance Directives and the Pursuit of Death with Dignity” (1993). He recently added a third book, “Making Medical Decisions for the Profoundly Mentally Disabled,” published by MIT Press (2005).
His latest book weaves together law, medicine and philosophy while exploring the legal and moral issues of people with lifelong cognitive impairments that prevent their exercise of self-determination. “While I felt I understood the decision-making principles for people whose earlier competency allowed them to form values and preferences, like Ms. Quinlan and more recently Ms. [Terri] Schiavo, I’ve always had questions about never-competent persons,” Cantor says.
Among other issues, the new book addresses: Who is entitled to act as a surrogate decision maker – a family member, close friend, judicially appointed guardian or a court? What standard should apply and, if the standard is “best interests,” how can this be measured and applied? What role does intrinsic human dignity play in surrogate decisionmaking?
Cantor argues in his book that profoundly mentally impaired patients have a 14th amendment right to have conscientious surrogates make important medical decisions. “While people with extreme cognitive impairments cannot be entitled to make their own decisions, respect for human dignity and persons’ well-being dictates their right to have a conscientious surrogate make decisions on their behalf,” he says. Normally, that means that a surrogate decision maker maximally extends the life of an incapacitated patient. Yet respect for the intrinsic human dignity of the incapacitated patient “sometimes dictates that the patient be allowed to die.”
Permanent unconsciousness provides his prime example.“The vast majority understand that it is demeaning and senseless to try to keep permanently unconscious persons alive at all cost,” Cantor writes. He adds that, for decades, data have indicated that 90 percent of people considering their own medical fates prefer death to the limbo of permanent unconsciousness.
Cantor further argues that even a so-called “best interests” of the patient standard does not necessarily compel surrogate adherence to the very best medical result. The interests of family or others can sometimes be considered in determining a patient’s medical fate. Surrogates may even, consistent with consideration of intrinsic human dignity, authorize some tissue donation or participation in some nontherapeutic medical research.
The political force that emerged in the Schiavo case in Florida – a right-to life ideology that would confine end-of-life decisions to situations in which the dying patient has given clear and convincing instructions – has pushed the debate about end-of-life care to the fore among legislators, health care providers and the lay public, Cantor says.
It would be “tragic” if this emerging legislative attention prompted an insistence on clear and convincing instructions as a prerequisite to any removal of life support, Cantor says. “This would weaken a never-competent patient’s prerogative to have a conscientious surrogate choose within a full range of medical options on behalf of the patient.”
– Carla Cantor is not related to the author.
Return to the Oct 24, 2005 issue
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