A critique of family members as proxy decisionmakers without legal limits.

Abstract

The empowerment of family members in the decision-making process of an incompetent patient's treatment is a growing trend in the medical, legal, and ethical studies communities. While the involvement of family members in such decisionmaking may be helpful and appear quite natural, the potential for violations of the incompetent patient's rights exists. The possibility of a violation stems from factors such as the emotional turmoil facing the family, the family's lack of sufficient information, the family members' inability to separate their interests from those of the patient, the possibility of a weak or nonexistent familial bond, and the family's conflicting financial interests. The following discussion presents the rights of patients with severe disabilities and asserts that these rights should be protected in the mechanisms for making medical care decisions. It offers a critique of the position that families be accorded proxy decision-making rights without guidelines and sets forth appropriate guidelines to protect the rights of persons with disabilities where families are allowed to make such decisions. Persons with a Disability Have Legally Protectable interests In the debate over who should make medical treatment decisions for persons with a severe disability, the voice of other persons with disabilities is not given sufficient hearing. Those unfamiliar with the experience of living with a disability have often found it easier to accept the notion of death for persons with a disability than life with a disability. The lead author has often found himself in court and on friend of the court legal briefs representing people with disabilities and organizations made up of people with disabilities. These people and organizations believe that persons with disabilities have a life worth living. Organizations such as the Association for Retarded Citizens of the United States (ARC/US), The Association of Persons with Severe Disabilities (TASH), and the United Handicapped Federation have adopted strong formal positions opposing the withdrawal of nutrition and hydration from persons who have severe disabilities but who are not terminally ill and not in uncontrollable pain, and for whom the food and water provides a physical benefit.(1) These disability rights organizations have taken this strong position based on two propositions. First, persons with a disability are entitled to the equal protection of the laws for their basic needs and have their own rights and interests that are entitled to be protected under the law. Second, these disability rights organizations and persons with disabilities object to the devaluation of the lives of persons with disabilities. To them, the question is not the goodness of the decisionmaker, but the goodness of the decision concerning care for persons with disabilities. What is paramount is not who decides but what is decided and the justifications for the decision. In making decisions, the rights and interests of the person with a disability must be safeguarded. Three such interests hay. e been recognized by courts: (1) an interest in personal autonomy, (2) an interest in bodily integrity, and (3) an interest in life. Persons with a Disability Have Interests in Both Personal Autonomy and Bodily Integrity All persons have protected individual interests in both personal autonomy and bodily integrity. The interest in personal autonomy is an interest attaching to each individual person. It is the personal liberty of each individual to decide what actions are best for him- or herself.(2) John Stuart Mill, the ubiquitously cited(3) philosophical champion of autonomy, argued for maximum personal autonomy for all persons, limited only where such personal autonomy would cause harm to others.(4) In the United States, where the Constitution guarantees the maximum liberty possible for each individual consistent with the protection of society and other individuals, personal autonomy, ar liberty, constitutes a powerful interest. …