COMMENTARY

When Patients Refuse Lifesaving Care

Andrew N. Wilner, MD; Ronald W. Pies, MD

Disclosures

June 09, 2017

Exaggerated Autonomy

Dr Wilner: The bills for the hospital continue to mount as the patient receives specialty care in the infectious disease clinic and is hospitalized periodically. Because of the patient's complications of AIDS, he has become debilitated and completely dependent on his family for activities of daily living. His fear that his family will reject him has actually increased the family's care burden owing to his complications of AIDS. The family will soon most likely suffer his death as well.

Dr Pies: What is the foundation of the concept of patient autonomy? In part, as attorney Carol Stamatakis notes[4]:

The right to refuse medical treatment is rooted in the common-law right to informed consent, the liberty interest under the due process clause of the fourteenth amendment, the state constitution and state laws governing the care and treatment of incompetent adults. Courts have relied on these sources of authority in defining a patient's right to refuse treatment.

Of course, the right to refuse medical treatment is only a subdivision within the broad territory of "autonomy"—a term that is itself subject to parsing and subdividing. Indeed, as Stamatakis notes, "The right to informed consent evolved from notions of personal autonomy rooted in the common law."[4]

But the concept of the patient's autonomy requires some amplification. "Autonomy" is generally defined as "the ability to function in an independent fashion." But in the medical-ethical realm, it would be a mistake to suppose that autonomy means simply, "The patient can do whatever he or she wants, and has the right to demand or refuse any treatment he or she wants"—no matter how irrational, self-injurious, or scientifically insupportable the patient's preference.

In the context of medical ethics, the concept of rational autonomy is usually invoked. That is[5]:

The right to informed consent evolved from notions of personal autonomy rooted in the common law.

In health care decisions, our respect for the autonomy of the patient would, in common parlance, imply that the patient has the capacity to act intentionally, with understanding, and without controlling influences that would mitigate against a free and voluntary act. This principle is the basis for the practice of "informed consent" in the physician/patient transaction regarding health care.

Moreover—and here I am really addressing your fourth question—the principle of autonomy is always balanced against, and is sometimes in conflict with, the three other core principles of medical ethics: beneficence, nonmalfeasance, and justice. Very briefly, these entail (1) a duty to be of a benefit to the patient; (2) avoiding intentionally causing harm or injury to the patient, either through acts of commission or omission; and (3) a fair distribution of goods and services, thus "giving to each that which is his due." As McCormick[5] points out, "...we must balance the demands of these principles by determining which carries more weight in the particular case." And, as your case vignette demonstrates, this is often a complex and difficult determination.

[P]hysicians have sometimes been relegated to the role of 'providers'—essentially, administrative agents taxed with carrying out the wishes of the 'consumer.'

In recent years, the principle of autonomy, in my estimation, has been disproportionately elevated by the "consumer movement" and its often vociferous insistence on "consumer rights." Concomitant with this trend, physicians have sometimes been relegated to the role of "providers"—essentially, administrative agents taxed with carrying out the wishes of the "consumer."[6] This trend, in my view, has diminished the importance of the other three principles of medical ethics, particularly those of benevolence and nonmalfeasance—sometimes to the detriment of the patient's care.

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