When making treatment decisions for incapacitated patients, the wishes of family members are “generally respected as a key element of decision making,” despite professional guidelines that recommend putting the patient's wishes first, results of an interview-based study show.
The U.S. courts and professional organizations such as the American Medical Association have advocated putting the patient's wishes first, but this autonomy-based approach is limited by the lack of advance directives or living wills for most patients. And even patient-chosen surrogates have been shown to be inadequate at predicting what patients would want, according to Dr. Alexia M. Torke of the Indiana University Center for Aging Research, the Regenstrief Institute Inc., and the Fairbanks Center for Medical Ethics, Indianapolis, and her colleagues (J. Clin. Ethics 2008;19:110–9).
“The findings suggest that physicians' decision-making framework was broader and more complex than previously thought,” they said.
Using semistructured, in-depth interviews, the investigators sought to determine how physicians make care decisions about adult inpatients who lack decision-making capacity.
The researchers interviewed 21 physicians from a Midwestern academic medical center, of whom 13 were men and 15 were white. Six were interns, eight were residents, one was a fellow, and six were attendings. Of these, 20 had made a major medical decision for an incapacitated patient within the previous month.
Each interview consisted of open-ended questions and was audiotaped and transcribed. The transcripts were analyzed by two of the study researchers to identify the major themes, and these themes were explored further in subsequent interviews.
The three major themes regarding physician decision making for such patients were: patient-centered ethical guidelines, or the patient's wishes and best interest; surrogate-centered ethical guide- lines, or the wishes and interests of the decision-making surrogates for the patient (usually family members); and issues of knowledge and authority for both the physician and surrogates.
In the absence of an advance directive or living will, physicians sometimes try to ascertain what the patient would want by asking family members about the patient's values and any relevant previous statements, Dr. Torke and her colleagues said. Physicians also took into account their own assessment of the patient's pain and suffering and quality of life when deciding the course of care, they said.
But in addition to the patient's wishes and best interest, physicians also considered the surrogates' wishes and interests, such as religious preferences and the burden on the family. Although “physicians generally said that surrogates' needs were less important than patient-centered concerns,” surrogates' concerns were more influential in the real-world setting than in theory, the authors found. Physicians “struggled when the concerns of family members appeared to conflict with concerns centered on patients,” but they tended to give a surrogate's wishes more weight when they believed that the surrogate had a high level of caring and goodwill for the patient, according to the researchers.
And though “direct conflict between the wishes and needs of family members and those of patients” is perhaps the “most vexing” scenario for physicians, they recognize that families are not always capable of fulfilling a patient's wishes–for example, family members may feel that accommodating a patient who wants to die at home will be too much of a burden.
The third major theme in the interviews, knowledge and authority, included physicians' knowledge of appropriate clinical care and the established standard of care. Physicians “often appealed to clinical considerations to guide their decisions” and “often justified choices that had an ethical dimension using only such clinical considerations,” Dr. Torke and her colleagues said. Several interviewees said they had attempted to guide a surrogate toward what they believed to be the correct decision according to their clinical judgment.
Dr. Jeffrey Nichols, a geriatric medicine specialist in New York City, said the study is a valuable addition to the ethical literature. “[It] raises concerns as to how physicians should balance competing interests and needs for patients who lack capacity when simple notions of patient autonomy may be difficult to apply,” he said.
The study was limited by the inclusion of a single medical center, the possibility that physicians are not aware of their underlying motivations, and the inability to determine the relative importance of each component of the decision-making process.
“Future guidelines for surrogate decision making should take account of actual clinical practices, and should be expanded to explicitly address these additional considerations,” the researchers concluded.