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. H. Russell Searight and Jennifer Gafford in "Cultural Diversity at the End of Life: Issues and Guidelines for Family Physicians" (American Family Physician, vol. 71, no. 3, February, 2005, http://www.aafp.org/afp/20050201.515.pdf) note that the concept of patient autonomy is not easily applied to members of some racial or ethnic groups. Searight and Gafford explained the three basic dimensions in end-of-life treatment that vary culturally: communication of bad news, locus of decision making, and attitudes toward advance directives and end-of-life care.

Members of some ethnic groups, such as many Africans and Japanese, soften bad news by using terms that do not overtly state that a person has a potentially terminal condition. For example, the term "growth" or "blood disease" may be used rather than telling a person they have a cancerous tumor or leukemia. That idea is taken one step further in many Hispanic, Chinese, and Pakistani communities in which the terminally ill are generally protected from knowledge of their condition. Many reasons exist for this type of behavior, such as viewing the discussion of serious illness and death as disrespectful or impolite, not wanting to cause anxiety or eliminate hope in the patient, or believing that speaking about a condition makes it real. Many people of Asian and European cultures believe that it is cruel to inform a patient of a terminal diagnosis.

The phrase "locus of decision making" refers to those making the end-of-life decisions: the physician, the family, and/or the patient. The locus of decision-making varies among cultures. The North American cultural norm is individual decision for one's own medical care. Koreans and Mexican Americans often approach end-of-life decision making differently, abiding by a collective decision process in which relatives make treatment choices for a family member without that person's input. Eastern Europeans and Russians often look to the physician as the expert in end-of-life decision-making. In Asian, Indian, and Pakistani cultures, physicians and family members may share decision making.

An advance directive (often called a living will) is a written statement that explains a person's wishes about end-of-life medical care. Completion of advance directives varies among cultures. For example, Searight and Gafford noted that approximately 40% of elderly Caucasians have completed advance directives, while only 16% of elderly African-Americans have done the same.

Polly Mazanec and Mary Kay Tyler note in "Cultural Considerations in End-of-Life Care: How Ethnicity, Age, and Spirituality Affect Decisions When Death Is Imminent" (Home Healthcare Nurse, vol. 22, no. 5, May 2004) that there are many differences among African-Americans, Chinese Americans, Filipino Americans, and Hispanic or Latino Americans regarding the role of the family at the end of life, preferences for the environment of the dying person, and preparation of the body after death. Mazanec and Tyler suggest that often a lack of attention to such cultural needs in end-of-life care can be a predominant factor in a person's experience of dying.

Due to differences among cultures regarding various facets of end-of-life decision making and preparedness, it appears important for physicians to realize patient autonomy is far from a universally held ideal. There are differences of opinion not only among ethnic groups but also within each ethnic group, such as differences with age. 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.