The Problem with Autonomy
An overemphasis on patient autonomy results in patients feeling abandoned and physicians feeling frustrated.
By Charles E. Gessert, M.D., M.P.H.
“… For many health professionals in the United States the concept of respect for autonomy has come to be the principle that trumps all other principles.” 1
—Mark Kuczewski, Ph.D.
Director, Neiswanger Institute for Bioethics and Health Policy, Loyola University
Some members of my aging generation of physicians feel rather wistful about the “good old days.” In the doctor’s lounge, or at a retirement dinner, one hears that the practice of medicine is not what it used to be, implying, clearly, that it is worse or less fun today than it once was. This wistfulness, or even bitterness, is often dismissed—especially by those outside of medicine—as sour grapes. However, there is more to the story. The statement recently overheard “If I were in college today, I would think twice before going into medicine” suggests that something of value has been misplaced, and that it would be well worth the trouble to recover it.
The practice of medicine has been affected by changes in technology, economics, epidemiology, and demographics. Everything is different: the tools we use, how we are paid, even the types of conditions we treat and the age of our patients. However, to me, the most intriguing changes have been in the way that physicians and patients relate to each other. Over the past 50 years, the physician-patient relationship has been transformed from one characterized by strong medical paternalism to one that now reflects strong patient autonomy.2
The term “autonomy” literally means self-rule.3 In practice, the principle requires respect for the decision-making capacity of competent adults. Respect for self-determination is deeply rooted in American history and imagination. We are “… a culture that celebrates the individual.”4 The rise of autonomy in bioethics is quite recent. Until the 1960s, medical ethics, as the field was then called, was largely “internal to medicine—those values, norms, and rules intrinsic to the actual practice of health care.”5 Physicians dealt with their codes of conduct and professional etiquette internally, as a family matter of sorts. During the last half of the 20th century, however, many traditional aspects of authority in our society were questioned, as manifested in the civil rights, feminist, and anti-war movements. The practice of medicine was affected as well. The discourse on medical morality that previously had been held within the profession gave way to a new way of thinking in which the ethical values of society at large—
including the rights of the individual—were applied to the practice of medicine.
The Clinical Application of Autonomy
Respect for patient autonomy is now fully integrated into the practice of medicine. In the clinic, the patient’s right to accept or refuse medical care changes the balance of power in the physician-patient relationship and engages the patient more fully in ownership of care plans. Shared decision-making has become the norm, and it is viewed by the patient and the physician as essential for honoring the individual and his or her dignity.
Autonomy rights make sense and are easiest to defend and implement in the context of the well-informed adult of sound mind.6 But we are routinely confronted with patients whose competence (legal status) or capacity (current ability) may be in question because they are minors, are imprisoned, have a cognitive impairment, are mentally ill, or are intoxicated. We sometimes suspend or abridge autonomy for such patients; but rarely do we put it aside in favor of another ethical principle—beneficence, nonmaleficence, or justice. Instead, we stretch and extend autonomy.
The most familiar tool for extending autonomy is the advance directive. A living will allows a person who is of sound mind to exercise autonomy over the care he will receive should he become unable to communicate his wishes. We also extend autonomy by empowering others to speak on our behalf when we cannot. This may be done formally, through a durable power of attorney, or informally, when we ask family and others to serve as our voice when we cannot speak for ourselves. We are still invoking autonomy in principle, as care is to be guided by our wishes. We just seek someone else to speak for us. In ethical terms, we seek a substituted judgment, which requires specific, personal knowledge of the individual and his or her wishes.
Autonomy at the End of Life
In end-of-life care, the extension of autonomy has been promoted vigorously, but with mixed results. To be sure, deference to the wishes of the patient and his or her family is a valuable starting point for all end-of-life care. However, it is reasonable to question the role of autonomy when continued aggressive care will not lead to recovery, but only prolong dying. Death teaches us that some things cannot be controlled. As the end of life approaches, the domains over which the patient or family can exercise control diminish to the vanishing point. It is reasonable to ask whether it is even possible for a human being to exercise autonomy in any meaningful way when nearing death.1 The approach of death signals that the other principles of medical ethics—beneficence, nonmaleficence, and justice—may be needed, and that perhaps they should even trump autonomy.
Autonomy at the end of life is not universally valued by patients and families. University of Michigan law professor Carl Schneider, who has written extensively on bioethics, begins his book The Practice of Autonomy by stating “my point of departure is the substantial number of patients who seem reluctant to make their own medical decisions.”6 A review of North American and European end-of-life practices concluded that “some findings cast doubts about the real amount of autonomy desired by patient and surrogates, even in North America.”7 Our findings from Minnesota focus groups suggest that families strive to avoid feeling that they might be responsible, in some way, for the impending death of their loved one.8 In this context, an appeal to autonomy may actually be a disservice to the peace of mind and well-being of the family.
Ethics consultations frequently involve an elderly patient with cognitive impairment and a poor prognosis, a care team that has tried everything, and a family that is unwilling to let go. Many such consults arise from the assumption—by families, clinicians, or both—that decisions must be made. In truth, in many end-of-life situations, we primarily are witnesses to an unfolding clinical story. As clinicians, we may turn to the family for a decision to withhold or withdraw aggressive medical care. This approach is consistent with respect for patient autonomy, but it may set the stage for conflict. The word “decision” implies that there are options for handling the clinical situation, perhaps more than actually exist. Asking for a decision may give the family the uncomfortable and erroneous feeling that something they choose to do may cause the death of their loved one. Our choice of words is important. When we suggest that someone “talk it over” with the rest of the family, we may be implying that a consensus is needed for a decision (this is autonomy at work). Instead, it may be preferable to suggest that they take a little time “to inform” the rest of the family.
Autonomy versus the Physician
Today, we have “a patient-centered medical ethics that emphasizes autonomy rights over professional obligations of beneficence when they conflict.”3 The rise of autonomy has brought “unprecedented challenges to [medical professional] authority.”3 A worst-case scenario illustrates the point. When patients insist on decision-making authority, it is tempting to defer to them. However, the “it’s your decision” approach can be a form of abandoning the patient. The physician may feel that without full authority to make decisions, he or she should not assume responsibility for outcomes. The physician may dispense with some of the soul-searching about the right course of action, thinking that the patient will decide what he wants, anyway. Such reasoning—stemming from our strong reliance on patient autonomy—may have taken some of the joy out of the practice of medicine. Carl Schneider spoke for the frustrated physician when he wrote: “If you don’t trust us doctors, if you think we have been paternalists, make your own decisions and don’t come bothering us with them. We’ll see how well you do on your own.”6
When physicians bore more of the responsibility for decisions, they also had more opportunities to practice beneficence. They could—and did—shift some of the burden of making difficult decisions onto their own shoulders when they were responsible for deciding when to tell a patient of a fatal diagnosis, when to withdraw ineffective care, and when to announce the approach of death. Perhaps the medicine that they practiced was more of an art than it is today.
A New Balance
Critiques of autonomy should not be taken as suggestions to do away with it. Instead, we should seek principles to complement it, especially when autonomy falters or is inapplicable.
The problems with autonomy are principally those of overuse, especially attempts to extend rights to those who are not adults of sound mind. Many of the ethics cases that have inspired national debates—Schiavo, Quinlan, Cruzan, Wanglie—have involved surrogate decision-makers and extended autonomy. Those cases have puzzled our European colleagues, as surrogacy and substituted judgment are not as widely used in Europe as they are in the United States.7 The European approach to decision-making for incompetent patients has been described as paternalistic.7 It is useful to look beyond that politically loaded term and to consider the concept of beneficence. Simply stated, we need to regain the sense that medicine is a profession that, at its core, is devoted to helping others.
The most articulate spokesman for promoting beneficence in the practice of medicine is Edmund Pellegrino, M.D., professor emeritus of medical ethics at Georgetown University. In For the Patient’s Good: The Restoration of Beneficence in Health Care, he reviews both paternalism and autonomy as guiding principles in medical ethics, and concludes that the older, more universal principle of beneficence should be restored to prominence. The danger of the efforts to vanquish paternalism may be that we “…may discard the most important value of medicine—acting for the good of the patient.”9 Pellegrino envisions beneficence as complementing autonomy, rather than competing with it, and he sees the practice of medicine as enriched by the partnership.
Pellegrino takes us from a contractual model of the physician-patient relationship based primarily on respect for patient autonomy to a more nuanced fiduciary model. “A fiduciary model … is based on the ethic of virtue rather than an ethic of rules.”9 Recently, he further articulated his vision for “medical morality,” emphasizing that professional ethics is more than a set of rules: it is the recognition of a relationship based on “the patient’s good.”10 Pelligrino’s vision provides ample room for the restoration of beneficence in the practice of medicine.
In 1990, Paul Bearman, M.D., then director of urgent care at Park Nicollet Medical Center, remarked on changes in medical practice, noting, “There is a feeling that you could just replace one physician with another, and that’s unfortunate.”11 I agree. The physician-patient relationship, based solely on respect for autonomy, is incomplete. The practice of beneficence is what connects physicians and patients in a more personal way.
When all is said and done, the problem with autonomy is that it has been too successful. It has eclipsed other important ethical principles that are needed in the practice of medicine, especially at the end of life. It has come to be regarded as the only ethical tool available, and accordingly has been called into service even when it is ill-suited to the job. For me, the joy of medical practice lies in the daily challenge of balancing respect for patients’ autonomy with that for beneficence, nonmaleficence, and justice. This may be the art of medicine after all. MM
Charles Gessert is a senior research scientist at the SMDC Health System in Duluth.
1. Kuczewski MG, Polansky R, eds. Bioethics: Ancient Themes in Contemporary Issues. Cambridge, MA: MIT Press; 2000.
2. Schneiderman LJ, Jecker NS, Jonsen AR. Medical futility: response to critiques. Ann Intern Med. 1996;125(8):669-74.
3. Beauchamp TL, Childress JF. Principles of Biomedical Ethics. Third ed. New York: Oxford University Press; 1989.
4. Dubler N, Nimmons D. Ethics on Call: A Medical Ethicist Shows How to Take Charge of Life-and-Death Choices. New York: Harmony Books; 1992.
5. ten Have H. Principlism: A Western European Appraisal. In: DuBose ER, Hamel R, O’Connell LJ, eds. A Matter of Principles? Ferment in U. S. Bioethics. Valley Forge, PA: Trinity Press International; 1994:101-20.
6. Schneider CE. The Practice of Autonomy: Patients, Doctors, and Medical Decisions. New York: Oxford University Press; 1998.
7. Moselli NM, Debernardi F, Piovano F. Forgoing life-sustaining treatments: differences and similarities between North America and Europe. Acta Anaesthesiol Scand. 2006;50(10):1177-86.
8. Elliott BA, Gessert CE, Peden-McAlpine C. Decision making on behalf of elders with advanced cognitive impairment: family transitions. Alz Dis Assoc Disord. 2007;21(1):49-54.
9. Pellegrino ED, Thomasma DC. For the Patient’s Good: The Restoration of Beneficence in Health Care. New York: Oxford University Press; 1988.
10. Pellegrino ED. Toward a reconstruction of medical morality. Am J Bioeth. 2006;6(2):65-71.
11. Kolata G. Wariness is replacing trust between healer and patient. New York Times. February 20, 1990: A1.