Beyond Respect for Autonomy
Recent public debates on issues such as physician assisted suicide and control over genetic samples highlight the importance of autonomy in American life and in American medicine. We want control over how things go in our lives, and we don't want others to force us to act against our will. Yet respect for autonomy has its limits, and in the realm of medicine, these limits are in need of some careful examination.
Respect for autonomy is a fundamental ethical principle in Western medical ethics. It requires a commitment to ensure that a patient's choices are fully her own, and that she is not barred from exercising these authentic choices. Such commitments within medical decision-making are often seen as a corrective for preventing some of the morally unacceptable excesses of paternalistic behavior within the medical system in the past, when patients were not always even consulted about the appropriate course of action.
The current operationalization of respect for autonomy within medicine requires getting informed consent from patients for medical procedures. Informed consent requires: (1) that the patient be competent to make decisions; (2) that she be informed about the relevant facts and likely consequences of potential treatments, including no treatment; (3) that she understand that information; and (4) that her consent is voluntary (not coerced). A patient who meets these four conditions is considered autonomous and the presumption is that her choices should be adhered to. In many cases, it is not difficult to meet this moral obligation. Often, it is clear that a patient is fully autonomous. Conversely, some barriers to acting autonomously are easily identified and can be largely addressed. Perhaps someone is pressuring a patient to make a certain decision, in which case clinicians can attempt to ensure that the patient has opportunities to independently reflect on and express her own wishes. Or perhaps a lack of full understanding may come out in a thorough conversation with members of the medical team, who can then ensure that the patient gets additional opportunities to become informed. But we are concerned that even though thinking in terms of respecting autonomy can often produce morally desirable outcomes and insights, in other cases there may be problems.
Consider the informed consent requirement for decisional competency. The majority of adults have such competency in their normal lives. But many adults have cognitive impairments, perhaps only very mild ones, which may mean they cannot meet typical standards for competency. Moreover, many additional adults will fail to meet competency standards when they are faced with serious medical decisions, due to the cognitive burdens imposed by the symptoms of their illnesses, the side effects of treatments, and the very natural emotional and psychological stress they may experience. If a patient cannot meet the standards for informed consent, then she is considered to be non-autonomous (at least with respect to some specific medical decisions). Often her wishes will be disregarded, and instead her caregivers will attempt to do what they think is best for her, based typically on some sense of a 'reasonable person standard.'
Our concern is that such a patient may be seriously disrespected in these circumstances. Even someone who is not, strictly speaking, autonomous may care about what happens to her, and feel shattered when her preferences are ignored. Overriding her wishes in the name of providing her with a different benefit may come at a significant cost. Bioethicists tend to think of such paternalism as warranted in cases where individuals lack the decisional competency seen as necessary for autonomy. But paternalism that ignores a non-competent individual's preferences – particularly consistently and deeply held preferences – fails to offer a kind of respect that is perhaps more fundamental than a respect for autonomy.
Perhaps medical professionals should look beyond the duty of respect for autonomy, to a more general duty to respect persons, which requires treating subjects of a life as beings that matter, and may further require taking their preferences seriously. This does not mean that these patients' every wish should be endorsed and acted upon. But we believe the obligation to respect others goes far beyond simply respecting the fruits of their cognitive competency. Many clinicians are already struggling with the limits that a focus on respect for autonomy imposes. We think pushing beyond this moral principle and specifying the character of respect more broadly is one of the key tasks facing bioethics.
This article was written for the newsletter by Professor Sara Goering and Professor Ingra Schellenberg, both of whom are philosophy faculty with the Program on Values in Society at the University of Washington.