The End of Life: Ethical Considerations - Patient Autonomy

According to the principle of patient autonomy, competent patients have the right to self-rule—to choose among medically recommended treatments and refuse any treatment they do not want. To be truly autonomous, they have to be told about the nature of their illness, prospects for recovery, the course of the illness, alternative treatments, and treatment consequences. After thoughtful consideration, a patient makes an informed choice and grants "informed consent" to treatment. Decisions about medical treatment may be influenced by the patient's psychological state, family history, culture, values, and religious beliefs.

Once informed by their physicians about their illnesses and medical options, patients also have the right to forego treatment. Former first lady Jacqueline Kennedy Onassis, after a difficult battle to arrest her non-Hodgkin's lymphoma, refused further treatment. When doctors told Ms. Onassis that the cancer had spread to her brain and liver and that there was nothing else they could do, she asked to go home. She signed a living will that forbade any heroic measures should the doctor diagnose her condition as hopeless. Once home, she received only palliative care (care to relieve symptoms rather than cure), lapsed into a coma, and died soon after, on May 19, 1994.

Not All Patients Want to Know

While patient autonomy is a fundamental aspect of medical ethics, not all patients want to know about their illnesses or to be involved in decisions about their terminal care. A study published in The Journal of the American Medical Association (Leslie J. Blackhall, et al., "Ethnicity and Attitudes toward Patient Autonomy," vol. 274, no. 10, September 13, 1995) found that the desire to know may not be equally shared by all ethnic groups in the United States.

The researchers surveyed 800 people 65 years and older, self-identified as belonging to four ethnic groups. They found that Korean Americans (47 percent) and Mexican Americans (65 percent) were less likely than European Americans (87 percent) and African Americans (88 percent) to approve of telling a patient the truth about a diagnosis of metastatic cancer (cancer that has spread to sites distant from the primary tumor and that is usually incurable).

Only about one-third of Korean Americans (35 percent) and about one-half of Mexican Americans (48 percent) thought the patient should be told a prognosis of terminal illness, compared with a larger percentage of African Americans (63 percent) and European Americans (69 percent). Korean Americans (28 percent) and Mexican Americans (41 percent) were also less likely to believe that a patient should make decisions concerning life support, compared with 60 percent of African Americans and 65 percent of European Americans.

The Korean American and Mexican American subjects in the study were more family-centered, with the family, rather than the patient, acting as decision maker. For these groups, patient autonomy was considered to be just another burden for patients already coping with serious illness. Surveys of Eastern European countries, as well as France, Spain, Greece, Japan, China, and Ethiopia, showed that doctors were more likely to inform families, rather than patients, about terminal illness.

The authors of the study believed it was important for physicians to realize that "the ideal of patient autonomy is far from universal." There are differences of opinion not only among ethnic groups but also within each ethnic group. For example, the subjects of this study were older adults. The authors speculated that younger people might have different feelings about these issues. They suggested that physicians keep in mind that, as with most issues, people bring their cultural values to bear on decisions about terminal care.

Health Care Proxies and Surrogate Decision Makers

When a patient is incompetent to make informed decisions about his or her medical treatment, a proxy or a surrogate must make the decision for that patient. Some patients, in anticipation of being in a position of incompetence, will execute a durable power of attorney for health care, designating a proxy. Most people choose family members or close friends who will make all medical decisions, including the withholding or withdrawal of life-sustaining treatments.

When a proxy has not been named in advance, health care providers usually involve family members in medical decisions. Most states have laws that govern surrogate decision making. Some states designate family members, by order of kinship, to assume the role of surrogates.