Conjectural Mixed Motives

AB is a seventy-four-year-old man with longstanding chronic kidney disease related to diabetes. Six months ago, his kidney disease progressed, and he began hemodialysis three times weekly. Since then, he has been hospitalized five times for various problems including cardiac arrhythmias, low blood pressure, fluid overload, and pneumonia.

One week ago, AB developed acute back pain; narcotics offered little relief. He was brought to the emergency room by his only son, FB, who is his primary caregiver. A scan revealed a bacterial abscess near his spine. In spite of appropriate antibiotics over three days, AB's mental state declined. He became disoriented and difficult to arouse.

FB begins asking the health care team if withdrawing dialysis is now appropriate. A multidisciplinary meeting is held with FB, members of the primary care team, and palliative care specialists. During it, FB describes his father's decline since initiating hemodialysis. AB previously enjoyed odd jobs and spent significant time with his grandchildren. After beginning dialysis and his subsequent hospitalizations, he became nearly bedbound, requiring twenty-four-hour-a-day care. He moved in with FB and now has little time for his grandchildren. FB even reports that his father had himself considered stopping dialysis; he planned to discuss this soon with his primary care physician.

FB has struggled with his role as primary caregiver. His father never wanted to be in a nursing home and FB respects this wish, but he has experienced difficulty with his employer, family stress, and fatigue—all of which are exacerbated by his father's occasional angry outbursts, refusals of care, and unwillingness to help.

During the meeting, the committee reviews AB's living will. Written twenty years ago, it appoints his now-deceased wife as his preferred medical decision-maker if he becomes incapacitated. It also states that, if his condition becomes irreversible, he does not want heroic measures or to artificially prolong his dying process. Instead, he would prefer to "die with dignity." Citing this and his father's progressive decline, FB asks for his father to stop dialysis and be transferred to hospice.

The health care team requests an ethics consultation: Does FB's caregiver burden undermine his legitimacy as surrogate decision-maker?

• Commentary
• Matthew DeCamp (bio)

The situation in which AB, FB, and the health care team find themselves is not uncommon. AB, as a result of his ongoing infection, is delirious and lacks decision-making capacity. His living will uses generalities like "heroic," "irreversible," and "artificial," all amenable to multiple interpretations and offering no clear guidance. His wife is deceased. Without other legally appointed decision-makers, responsibility falls to his next-of-kin, his only son.

FB assuredly feels internal discord. On the one hand, he is AB's medical decision-maker and ought to be able to make a substituted judgment—in other words, what AB "would have wanted." On the other hand, he is also AB's primary caregiver and will himself be impacted by whatever decision he makes. Tackling his apparent role conflict requires addressing both substituted judgment and caregiver burden, and more importantly, connecting the two.

Substituted judgment has significant though frequently overlooked limitations. Empirical research suggests that surrogates correctly predict patients' end-of-life treatment preferences only two-thirds of the time. Further complicating things, an individual's preferences regarding medical decisions often change over time. Patients report that they would rather have a family member provide input into their decisions instead of merely "substituting" his or her own judgment, and surrogates describe incorporating their own values—what they want versus what the patient would want—into decisions for others. These findings have motivated calls to replace substituted judgment altogether. Until viable alternatives exist, however, individuals like FB will be expected to make decisions, pure or not, on behalf of their loved ones.

The health care team's question involves not just FB's substituted judgment, but also the impact of caregiver burden on it. FB's experience here is again not uncommon. Families caring for loved ones pervade the United States. Caregiving is associated with physical, emotional, and financial woes: over half of full-time family caregivers experience fatigue or clinical...