Does autonomy require informed and specific refusal of life-sustaining medical treatment?

• Author: Rouse, Fenella

Does Autonomy Require Informed and Specific Refusal of Life-Sustaining Medical Treatment?

The title of this article assumes that autonomy is desirable, hardly a controversial assumption in this century and this country. But the question to be addressed is not whether it is desirable, but whether it is a self-sufficient principle in the context of medical treatment, specifically in the decision to accept or refuse treatment that can extend lives. To answer that question we will have to look at the roots of the principle, how it has been applied to health care decisions, and whether it provides practical guidance in those matters. The moral adequacy of autonomy has been challenged in recent years,(1) but this article will address only its practical application. If it fails as a practical model, the question that remains is how these decisions should be made, given that they are made every day in every hospital in the country.(2)

Appelbaum, Lidz, and Meisel have described the concept of autonomy as referring to personal freedom of action or the right to do as one pleases, within certain restrictions.(3) They describe the central point of Kant's thoughts on this subject as "the freedom of the individual to pursue the dictates of a self-legislated ethical system."(4) In accord with Mill's view, they write: "Utility would be maximized as long as the individual knew what produced personal happiness and was allowed to act on that knowledge. If the maximization of such individual desires were seen as the main goal of human action, it followed that individuals should be permitted the maximum freedom to pursue this personal happiness, consistent with allowing others that same right."(5) In Kant's own words: "Act so as to treat man, in your own person as well as in that of anyone else, always as an end, never merely as a means."(6)

In American jurisprudence, autonomy is the guiding principle in two parallel streams of law, the constitutional right of privacy (most often described in Brandeis' words as the right to be "let alone"(7)) and the common law theory of self-determination. The law's definition of autonomy in early cases is that of a negative right - a right to be let alone, to have no state interference with one's legitimate private life, or at common law, the right to refuse to have operations performed. Cardozo's description of self-determination in medical matters has been cited so often that it has become a cliche. Nonetheless, it remains the seminal statement.

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.(8)

More recent cases have emphasized the personal nature of autonomous decisions, defining the concept, for instance, as "self law, the ability to decide an issue without reference to or responsibility to another."(9) The shift from doing nothing without permission to doing what the person would have wanted may reflect not so much a change in thinking as a change in response to new medical capabilities. As medical technology developed, more options became available. When Cardozo wrote, in 1914, the causes of death were quite different from those that are common now. Communicable diseases were prevalent the chronic degenerative disease was much less common.(10) Influenza and pneumonia were the leading causes of death in 1900. By 1976, heart disease, cancer, and cerebrovascular disease had taken over.(11) Lives can now be prolonged in a way that was inconceivable at the beginning of the century. Those facing death are now more likely to be aged and to be suffering from one or more ailments for which some potentially therapeutic treatment may exist.(12) Lives can often be saved, but rehabilitation is not, however, always possible. At least some of the extra years of the lives we have saved may be spent in a chronically debilitated, demented, or even an unconscious condition.(13) The issue now is not so much one of life or death, but of recognition that individuals differ in the degree and circumstances in which they wish to have their lives extended.

Informed consent, which is often described as the analytic forerunner of informed refusal, emerged in part in response to the increased complexity of care. At least in part, it is a reflection of the value our society places on a person's autonomy.(14) It has been described as the "primary vehicle by which a person could protect the integrity of his or her own body."(15)

The degree to which a patient's independent informed consent can ever be acquired has been the subject of much discussion.(16) The difficulties are obvious. Even if the person can properly understand the medical alternatives and their implications, not all physicians have the skills, time, or inclination necessary to communicate their choices.(17) Physicians strive for it, and hospitals have forms which purport to show that it has been given, but as others have pointed out, informed consent is invoked in courts only in retrospect, when an injury has been sustained and there has been an alleged failure to acquire informed consent.(18)

This article, however, is not about informed consent; it is about informed refusal. When the Karen Ann Quinlan(19) case reached the New Jersey Supreme Court in 1976, it alerted us all to the possibility that life could be prolonged in ways that were not previously possible. The case brought home to us the fact that death could now be kept at bay for many years, but that the person whose life was at issue might be permanently unconscious and therefore unable to be involved in decisions herself. Karen Ann Quinlan was not typical of the dying patient (because she was so young) but her case exemplified the implications of the new forms of life-sustaining technology. Almost no disease can be said any more to have a natural history.(20) In the vast majority of cases, we will be unconscious or otherwise unable to make or communicate our own wishes, and the precise moment of death will be chosen by someone else.

In the increasingly impersonal world of medical treatment, the likelihood is that the other person will be a member of a medical team who has never met us and will have no information about whether we would consent to or refuse the treatment that could extend our lives. Such a situation is clearly a direct challenge to our notions of independence. The patient who cannot currently provide informed consent is incapable of directing the treatment that would most comport with "the dictates of his own self-legislated ethical system." Lawmakers confronted with this situation and familiar with the doctrine of informed consent, reasoned that the necessary corollary of informed consent must be the right to refuse treatment. "The patient's ability to control his bodily integrity ... is significant only when one recognizes that this right also encompasses a right to informed refusal."(21)

Ironically, it could well be argued that if autonomy is the right to be let alone, there is no need for an informed refusal. A failure to acquire informed consent would simply, of necessity, mean that the patient be let alone and not be treated. But in our society, which does not value autonomy alone, such a result is rightly impermissible. To use another cliche: "No man is an island ... any man's death diminishes me, because I am involved in mankinde."(22) We value our ability to care for each other. We recognize in formal ways, for instance, the suspension of the requirement of informed consent in emergency situations, that treatment is sometimes properly given without consent. But many of us would argue also that medical treatment is a basic right that should be available to everyone. There is a difference, however, between making treatment available to those who want it and forcing it on those who may not have wanted it, simply because they cannot be said to have made an informed decision to refuse it.

The need for informed refusal does not spring from a respect for the right to be let alone - that would assume refusal in the absence of consent. It springs instead from a societal interest in enabling a person to pursue his or her own particular plan of life and from our contemporary health care system in which we are forced to accept the idea that treatment is sometimes provided when the patient would refuse it. What we are doing when we promote the idea of informed choice in medical treatment is striving to create a world in which the individual is allowed to act on the knowledge of what, for him or her, creates individual happiness.

Courts faced with the problem of how best to...