Humanist Perspectives: issue 153: Medical Practice and Personal Autonomy

Medical Practice & Personal Autonomy
by Carol Collier

illustration by Marian Bantjes

In his book, Confessions of a Medicine Man, physician-philosopher Alfred Tauber describes the attitude of, and deference to, his father, a doctor in the southern USA in the 1960s. The young Tauber often accompanied his father on house calls:

On the rare occasions I actually witnessed him examining a patient, I was struck by his commanding authority. He always dominated the interview. If his patients were well prepared and posed questions on his entry, he would summarily dismiss their complaint or shortly mumble a response. He was paternalistic, domineering, and at the same time, remote. There was always a certain distance maintained between him and his patients. The working-class men and women whom he served seemed to adore him… My father thought that his behaviour instilled confidence and, more important, respect.

The elder Dr Tauber is an example of the paternalism of his generation. More highly educated than most of their patients, looked up to in their communities, doctors had long-standing relationships with their patients and their families at both the personal and professional level and their instructions were usually obeyed without question. Dr Tauber would probably have resented being called paternalistic: he was, after all, simply doing what was best for his patients and, as their doctor, both he and his patients assumed that he knew what was best.

While most of us today have, at one time or another, encountered a paternalistic physician, few of us would regard such a person as a model of what we expect from a medical professional. Most of us have the capacity to understand a medical diagnosis and prognosis, have access to information via the Internet, have a good idea of what our options are — or should be — in a given situation, and feel we have a right to be given all the information that we need in order to make an informed choice about our treatment. In other words, we demand that our autonomy be respected.

autonomy: the first principle of biomedical ethics

Almost from its inception in the 1970s, the young discipline of biomedical ethics has been governed by four principles: autonomy, beneficence, non-malfeasance and justice. The principle of autonomy holds that a patient has the right to make his or her own decision regarding treatment — including the right to refuse treatment — without being coerced by medical staff or family members. The principle of beneficence, on the other hand, holds that physicians have a duty to do what they think is best for their patients, while the principle of non-malfeasance — sometimes included within the principle of beneficence — holds that they have a duty not to harm them. The principle of justice concerns the just distribution of medical resources as well as a requirement to treat patients equally (e.g., by not discriminating on the basis of gender, race or wealth).

The principle of autonomy often comes into conflict with the principle of beneficence as in the case of a patient who refuses treatment that a doctor believes is necessary for his or her health or even life. It can also come into conflict with the principle of justice, a situation that is evident in the Canadian debate over private clinics to serve those who can afford to pay. On the other hand, in cases where the imposition of high-tech treatment can cause more harm than good to a patient, autonomy aligns itself perfectly with the principle of non-malfeasance.

As an antidote to paternalism, as a fortress against over-treatment, and as an impediment to abuse in medical experimentation, the principle of autonomy is supported unequivocally by bioethicists, and has been upheld by the courts even when the refusal of treatment results in the death of the patient. However, other appeals to autonomy in support of demands for treatment that a doctor may consider frivolous, futile, or unethical receive less than unanimous support. It is one thing for a patient to refuse treatment that he or she considers futile or burdensome, or cannot accept for religious reasons (for example a Jehovah’s Witness refusing a blood transfusion); it is quite another to insist on a drug therapy that one has seen advertised on television, to demand IVF using a deceased person’s sperm, or to demand an operation to mould one’s foot into a form that will fit the latest shoe craze. Daniel Callahan, a well-known bioethicist, thinks that the principle of autonomy has been taken to extremes, playing a pre-emptive and exclusionary function in medicine, and that it should be restrained. For him, nothing is of greater importance than to regain “the moral commons in medicine,” something that he believes has been lost in the late twentieth-century shift to autonomy.

origins of the principle of autonomy

Three contemporary attitudes to autonomy can be traced to three different moral and political philosophies. The first attitude puts the emphasis on an individual’s capacity to make his or her own moral judgments: ‘I am an intelligent, free adult and I have a right to make my own decisions.’ This attitude can be traced to the moral philosophy of the eighteenth-century philosopher, Immanuel Kant. Kant’s moral philosophy also links his important notion of respect for persons to autonomy, holding that each individual must be respected as an end in itself and never treated only as a means to an end — an essential element of the principle of autonomy in bioethics.

The second attitude can be paraphrased as follows: ‘My action will not harm anyone else, therefore nobody has a right to refuse my request (or stop me from doing this).’ This belief can be traced to the political philosophy of the nineteenth-century philosopher John Stuart Mill and to what is often referred to as the harm principle. The third attitude is tinged with the notion of property rights coming out of the philosophy of the seventeenth-century philosopher, John Locke, and claims: ‘It’s my body and I will do what I want with it!’

In theory, the literature of bioethics tends to fall back on Kant’s moral philosophy as a justification for the principle of autonomy. In reality, however, the more popular and non-academic approach to a defence of autonomy seems to be a combination of the property rights of Locke and the harm principle of Mill.

Both Kant and Mill have something to teach us about autonomy and its usefulness in medicine, although what they actually had to say is sometimes barely recognisable in the popular attitudes expressed above. While space does not permit a detailed analysis of Kant’s moral philosophy, suffice it to say that determining what is right and wrong is a very demanding and difficult exercise that never involves simply knowing what one wants to do. It is always a question of what one must do. The notion of acting out of a sense of duty is primordial in Kant. Further, for Kant, actions are right or wrong in themselves and the consequences are not part of the moral equation. In other words, for a Kantian, the end never justifies the means.

Similarly, while Mill’s view of freedom does indicate that we should be free to act as we wish if we are not harming anyone else, his notion of autonomy, in fact, is more profound. It has two dimensions that are left out of a superficial reading of the harm principle: an absolute requirement to think for ourselves (as opposed to blindly following common opinion or even our own desires) and a requirement to assess the impact of our actions on others. Our desires and impulses must be strictly our own, the outgrowth of the development of character. As Mill puts it: “One whose desires and impulses are not his own, has no character, no more than a steam-engine has character.”

An autonomous choice, for Mill, is one that is the result of self-control and self-knowledge — a choice with which one can identify as an independent thinking person. It is also one that, following Mill’s utilitarian principle of the greatest good for the greatest number, takes into consideration the impact of the choice in question on everyone who could be affected by it. Few decisions in the medical field, no matter how personal, do not have an impact on others (health professionals, family, friends, society).

Thus, for both Kant and Mill, autonomy is a demanding principle, and neither philosopher can be used to justify an attitude of individual autonomy based solely on personal needs, desires or preferences. The exercise of autonomy is a right but, for both philosophers, it is also a responsibility. Ethicists such as Callahan believe that we have been stressing the right to autonomy without emphasising the responsibility that goes with every choice we make.

The third attitude to autonomy mentioned above, ‘It’s my body and I can do what I want with it,’ presupposes that one’s body is somehow separate from one’s ‘self’ — a view that can be traced back to the 17th century philosophy of René Descartes (“I think, therefore, I am”) and one that still influences Western medicine. The ‘my body as my property’ view sees the body first as an object, then as a commodity. In fact, much of the discourse surrounding the buying and selling of organs, tissues and reproductive materials is based on a vision of the body and its parts as commodities, raising serious metaphysical and moral questions that often go unasked even in bioethics. This view also reinforces a consumer model of medicine: the patient as consumer; the doctor as provider of a service.

limits to autonomy

Whatever the philosophical shortcomings of the prevailing attitudes, autonomy remains an important and valuable principle in bioethics. Too many people in the past were forced to undergo painful treatment, or treatment that would not make them well, against their wishes. The case of Dax Cowart is illustrative in this regard. In 1973, having suffered horrible burns as the result of a natural gas explosion, he was forced to undergo debilitating and extremely painful treatment in spite of his pleas to let him die. His mother thought the seriousness of his physical condition made him incompetent to make up his own mind; his doctor thought he was depressed and thus not competent to reject treatment. Cowart was treated for ten months against his will (“I was nothing but a hostage to the current state of medical technology”) and was left scarred and disfigured, blind, and without any fingers. He eventually recovered, went to law school, married and began to enjoy life. He even took up karate. He does not believe, however, that the end justified the means: “I still think it was wrong to force me to undergo what I had to, to be alive.”

This case would have a different ending today, and Dax Cowart would be the first to applaud court decisions that have acknowledged — and enforced — an individual’s right to refuse treatment, even if the refusal of treatment results in death. In spite of this recognition, it is important not to ignore the very real conflict between autonomy and beneficence in such cases and to have sympathy for the medical practitioners who must cease treating someone even though they believe the treatment is beneficial. It is, in fact, up to the patient to decide what is beneficial and what is not; if there is no hope of returning to a state of health or quality of life that he or she believes is necessary, it is the patient’s right to refuse treatment. In short, no one should be subjected to treatment against his or her will; this is the fundamental principle underlying the practice of informed consent.

Other situations, however, are not so straightforward. The principle of autonomy was upheld by the Supreme Court of Canada in the case of a glue-sniffing pregnant woman whose behaviour was threatening the health of her future child, a decision about which there is considerable debate. To force a pregnant woman into treatment, (or even, as in some cases in the USA, put her in jail) is to treat her as less than autonomous. On the other hand, while her right to act as she sees fit upholds her autonomy, it imposes a heavy cost on both the future child and on society — into whose care the child will probably fall. A Utilitarian would be inclined to sacrifice the autonomy of the woman to the greater good of the child and society. A Kantian would want to uphold her autonomy, but would have trouble with the woman’s glue sniffing as a breach of her duties toward herself. The Supreme Court opted for Kantian autonomy, without the Kantian conflict!

The glue-sniffing case falls under the rubric of maternal-fetal conflicts, and the number of such cases can only increase with increasing scientific evidence about the impact of maternal behavior on the developing fetus. Similarly, the expanding possibilities of fetal surgery raise questions about a woman’s right to refuse her consent to treatment of the fetus while it is still in her body. These situations force us to ask whether a pregnant woman has less autonomy than a non-pregnant woman — or a man. Many fear a positive response and recognize the danger of reverting to a perception of the pregnant woman as a mere vessel.

from refusing treatment to demanding treatment

The above examples concern conflicts surrounding a patient’s right to refuse treatment that a doctor thinks is necessary or beneficial. Other examples concern a patient’s right to demand treatment that the patient wants but that the doctor thinks is unnecessary, inappropriate or even harmful. For some, the principle of autonomy demands that the doctor give the desired treatment to a patient. For others, such a position represents an infringement on the doctor’s own autonomy — in this case his or her professional autonomy. If a patient is dying and the doctor knows that any further treatment is futile, but the family insists that the treatment continue, is the doctor under an obligation to provide it? Some ethicists would answer affirmatively; for others, the answer is unambiguously negative.

Some examples in this area are quite disturbing: one case involves a prisoner who wants to donate his heart (a rather bizarre form of suicide!); another, a father who wants to donate his second kidney to his child whose body has begun to reject the one he has already donated. There are even cases of people who want to have limbs amputated — a strange desire that, although rare, has a name — apotemnophilia — and, according to Carl Elliott in his book Better than Well, enough devotees on the Internet to support a minor industry! At least one surgeon has performed amputations on completely healthy people because they desired it; most surgeons, however, would refuse in accordance with the principle of non-malfeasance. These cases illustrate the third attitude to autonomy: my body is my property. As Elliott says, referring to the ‘wannabe’ amputees, “Their bodies belong to them, they tell me. The choice should be theirs.” But whether a case is extreme or more mundane, we must question whether a doctor — who is, after all, the one with the medical expertise — is simply there to do the patient’s bidding. Those who would say yes to this question have, in the view of ethicists such as Callahan, taken the notion of autonomy too far.

The whole area of reproductive autonomy is one where many thinkers believe that the notion of autonomy has been stretched beyond its ethical limits. In a way that is difficult to either explain or justify, a version of autonomy that holds that a woman may choose not to have a baby has been transformed into a version of autonomy that holds that a woman (or a couple) has a right to have a baby. In many cases, the process by which conception would take place raises serious questions about the long-term impact on the child born of such ‘unions’ (e.g., purchasing ‘designer’ ova via the Internet, using fetal eggs, or post-mortem eggs or sperm, or buying — or ‘adopting’ — the embryos of other couples). Adoption is strictly regulated in this country, and couples cannot adopt a child simply because they want to — the interests of the child are paramount here. Yet, with the many forms of baby-making that have become possible as a result of reproductive technologies, the interests of the child do not seem to be the main concern. Further, the harm principle should not be invoked in support of autonomy in many of these cases since it is difficult to show that the confused genetic and biological heritage of the children involved will not cause them long-term harm.

In fact, our right to autonomous choice is more myth than reality

Autonomy is a foundational principle of our liberal, individualistic society. But, just as some think that individualism in our society has been taken to unrealistic extremes, many ethicists believe that the principle of autonomy in bioethics has been stretched to its limits — and beyond. It is one of the ironies of our approach to autonomy that the more we become inter-dependent in our complex, urban world, the more we proclaim our independence! In fact, our right to autonomous choice is more myth than reality, no more so than when we are ill and unable to exercise it. All the same, it is an idea that is hard to give up and Callahan’s exhortation to diminish its importance in order to regain the moral commons in medicine may be just a dream — one that is beyond our individual and collective will. Ultimately, as technological possibilities outpace our medical resources, autonomy may be forced to cede to economics. From this perspective, the battle between autonomy and justice has barely begun.

Further Reading

Carol Collier is a former Public Servant who left the Public Service in 1995 to do a PhD in Philosophy at the University of Ottawa. She is now teaching philosophy at the University of Sudbury College of Laurentian University.

Illustrator Marian Bantjes is a freelance graphic designer and regular contributor to the design forum Speak Up. She lives on Bowen Island. www.quatrifolio.com