October 1980 II/2
PROXY CONSENT: DECIDING FOR OTHERS
Four recent, well-publicized and highly controverted legal decisions determining medical treatment (Quinlan, Saikewicz, Spring and Fox) are concerned with the notion of proxy consent. These cases provide an occasion to review the ethical norms for this form of consent and to comment briefly upon the aforementioned decisions.
Whenever possible, informed consent on the part of the subject is ethically and legally necessary for every medical treatment and research project. Sometimes, however, the subject is not able to give consent. For example, an aged person in a coma, a two-month old child, or a fetus in the womb cannot perform the rational act necessary for informed consent even though he or she may require some medical treatment. In such cases, another person is called upon to offer consent: this is called proxy or vicarious consent.
Though proxy consent is often identified with informed consent, the two are quite different. Proxy consent is not a subspecies of informed consent, rather it is a substitute for informed consent and is sought when acquiring informed consent is impossible. For the ethical and legal use of proxy consent, two conditions must be present: (1) the patient or research subject cannot offer informed consent; (2) the person offering the consent ought to determine what the incompetent person would have decided were he or she able to make the ethical decision. This second condition is difficult to ascertain and may be subject to dispute.
Hence, decisions of proxy consent should be made in view of the good of the individual patient, not for the higher good of society, nor for a class good, because this would amount to manipulation of the person. When deciding upon the treatment for a comatose person dying of cancer, for example, the proxy must seek to determine what the patient would decide if able to make the decision. What would benefit people other than the patient should not be considered unless it can be assumed reasonably that this would have been the consideration of the person who is the patient. Hence parents of a newborn child with serious birth anomalies may not say, "Let the baby die, he will be a burden to us." Rather, they must make a decision which is in accord with the good of the child, weighing especially the fact that in most cases we judge life to be a gift worth preserving, even if living may involve working with handicaps or infirmities. Because some parents abuse their rights to decide for their children, there is a trend to question the rights of parents to make proxy judgments, insisting upon a better system of checks and balances than exists presently.
Because of the nature of a proxy judgment, the person given the right to make such a judgment for another should be one who knows the person well and who has a loving concern for the well-being of the person for whom the judgment is made. Usually, then, the person who is presumed to have a legal and ethical right to make a proxy judgment is the parent, spouse, or next of kin of the person who is incapacitated or incompetent. However, others, such as, physicians and ethical or spiritual counselors should be consulted.
The presumption that a parent, spouse or relative will judge rightly is especially strong because of the bond of love which unites them to the patient. But of course this is not an absolute presumption. It may yield to a contrary fact. Thus, if the person who has the right to make this decision decides something which does not seem to be in accord with the good of the patient, other responsible people may challenge the decision of the proxy and even bring the matter before the civil authority. Physicians, nurses, and hospital administrators who determine with good reason that the proxy is not acting in accord with the best interests of the patient have the ethical, and sometimes legal obligation, to intervene and ask the court to limit or abrogate the rights of the parent or relative by appointing another person to act as proxy. The aforementioned legal decisions are examples of the court intervening in the treatment of a patient in this manner. Unfortunately, in the Saikewicz, Spring and Fox decisions, the courts determined that only the legal authority can act as .proxy for removing life-sustaining equipment in life or death situations. These decisions arrogate to public authority matters that belong in the private and personal domain and show a general lack of trust for loved ones to interpret the wishes of a comatose, and in these cases, dying person.
These decisions were reached because the courts based their thinking upon the notion that preserving life is an absolute good and thus the courts "have no choice but to intervene and examine each case on an individual patient by patient basis" (Fox). While preserving life is a highly valued good, and while in cases of doubt the proxy should decide in favor of prolonging life, it is clear that in some circumstances the proxy may determine ethically to allow a person to die. For example, when prolonging life would not serve any human purpose or would impose an intolerable burden upon the patient, the decision to withhold or remove life-supporting means may be made so long as normal care due a sick person is maintained. Thus it seems a more nuanced ethical evaluation would have kept all of these cases out of court in the first place. Be that as it may, the usurpation by the courts of ethical decision making can be viewed only with great alarm.
Kevin O'Rourke, OP
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