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

• Author: Bopp, James, Jr.

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.

The closely related interest in bodily integrity means that each person has the right to determine what will be done with his or her own physical body. As stated by the New York Court of Appeals: "Every human being of adult years and sound mind has a right to determine what shall be done with his own body; and a surgeon who performs an operation without his patient's consent commits an assault, for which he is liable in damages."(5) As expressed by the United States Supreme Court, "No right is held more sacred, or is more carefully guarded, by the common law, than the right of every individual to the possession and control of his own person, free from all restraint or interference of others, unless by clear and unquestionable authority of law."(6)

Flowing from the right to autonomy and the right to bodily integrity is the requirement that providers of medical services obtain the informed consent of the patient prior to any treatment, except in cases of emergency.(7) For informed consent to be binding, it must, of course, be given by a competent adult.(8)

Persons with disabilities have interests in autonomy and bodily integrity equally with other persons. These rights may not rightfully be violated. The exercise of personal autonomy and bodily integrity is something one must by definition do for oneself. Absent an individual's ability to make rational choices, he or she cannot exercise the right to autonomy and bodily integrity. In short, incompetent persons are not autonomous. A person incapable of choosing is not capable of choosing.(9)

However, incompetent persons retain these rights of autonomy and bodily integrity within themselves, even when they are incapable of exercising them. Since they are inherently personal rights, they cannot be exercised by another. Therefore, for someone to purport to make medical care decisions for a severely disabled, incompetent person which lead to that incompetent person's death is to deprive the incompetent person of his or her rights to autonomy and bodily in integrity. To choose death for someone without his or her consent is a clear invasion of bodily integrity. Moreover, choosing nontreatment leading to imminent death permanently divests an individual of any autonomy, for dead persons have no rights, and removes all hope of a return to cognition and the exercise of autonomy.

Ironically, those who believe that a right to autonomy and bodily integrity may be exercised by another seen to consistently assert that autonomy and bodily integrity mean only one thing for a severely disabled, incompetent person relying on others for medical care and food and water--a choice resulting in death for the incompetent person. Even with regard to patients who are truly capable of making autonomous decisions and asserting their bodily integrity, both the option of receiving beneficial medical treatment and the option of refusing such treatment must be considered equally real choices for true autonomy to exist. There is no true autonomy where only the choice for nontreatment is held to implement the autonomy right. The same must be true for the severely disabled, incompetent, medically dependent person.

This has special application where a decision is purportedly made for an incompetent person by another and the decision involves whether to continue food and water for an incompetent person. In such cases, even if autonomy and bodily integrity could rightfully be exercised for another, respect for the patient's interest in autonomy alone would require that both a decision to provide care and not to provide care be given equal value. In other words, respecting the patient's autonomy, i.e., his or her ability to make choices freely about his or her own sell, does not mean that food and water should be withdrawn.

This was not so in the case of Sue Ann Lawrance,(10) a person diagnosed to be in a so-called persistent vegetative state for whom withdrawal of nutrition and hydration was being considered in Indiana in 1991. In that case, the trial court characterized Ms. Lawrance's liberty interest in personal autonomy as "the right ... to be free from unwanted medical treatment...."(11)

However, true autonomy requires the exercise of a choice; "liberty" makes no sense if there are no choices available.(12) Thus, the exercise of Ms. Lawrance's autonomy was no more protected by a decision for nontreatment than it would have been by a decision to treat. Moreover, true autonomy and bodily integrity resided within her, were inherently not transferrable, and were clearly violated by a decision to terminate her existence.

In sum, assertion of a patient's autonomy and bodily integrity rights favors continuing treatment or provision of food and water, for to withdraw such treatment is to violate the patient's autonomy and bodily integrity. Moreover, any assertion of the rights to autonomy and bodily integrity must be considered in the light of the strong right to life described next and a long-established public policy of favoring life over death.

Persons with a Disability Have an Interest in Life

The fourteenth amendment to the Constitution of the United States mandates that no state may deprive a person of life without due process of law.(13) As the United States Supreme Court recently declared, "[i]t can not be disputed that the [fourteenth amendment's] Due Process Clause protects an interest in life[.]"(14)

This constitutional right to life protects a person from "actions legally characterized as homicide or assisted suicide"(15) as a result of some sort of state action or involvement or by state permission. The individual's right to life is a "fundamental" right, meaning that a state needs a "compelling interest" to justify violating the right in any way.(16)

This right to life is fundamental, of course, because to have life itself is the right to have rights. To remove one's right to life is to strip the individual of all other rights.(17)

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