Who Speaks for the Patient?

Several years ago, there was this patient in the ICU. (Well, I suppose that could go without saying; but a story has to start somewhere.)

So, there was this patient. He had lived a hard life, with much of his adulthood (and probably much of his adolescence) spent addicted, enslaved to several different substances. In consequence, he had a number of different health problems. Now he had had a stroke. He had lived a hard life, and now it was coming to an end.

Or, at least it might have. This patient was, however, “unbefriended.” That’s the expression used in medical ethics discussions for the patient with no surrogate, no advocate. This patient was in one of those difficult cracks in our commitment to (almost worship of) the patient’s autonomy. He could not exercise his autonomy, and he had no one to exercise it for him.

Surrogacy is a corollary issue to autonomy. Autonomy is about the patient expressing his or her own wishes. We want to give care as best we can in conformity with the patient’s values. But, when the patient can’t express those wishes, we can be at a loss. So, we seek a person to act as surrogate for the patient. We hope the patient has an agent duly designated by a Durable Power of Attorney for Health Care. We expect the patient will have someone who fits into the various customary categories of “Next of Kin” (and, remarkably, those categories are more custom than regulation). But, here was a patient who, at first, seemed to have neither. What were we to do?

We had few options, and we didn’t really like those we had. We could seek a court-appointed guardian. However, court-appointed guardians had (and in many places still have) limited authority for health care decisions; and that did not include authority to discontinue care, even if futile. We could keep caring for him until he died despite our care. We thought that abusive of the patient, doing things to him that didn’t really benefit him; and we thought that abusive of another patient who could benefit from those procedures but wouldn’t receive them because he was receiving them. That would also, of course, be quite costly for the hospital. We could try to find some placement for him that Medicaid would provide, but we knew there were almost none that would take a patient with as many medical issues as he had.

With all that, it’s no surprise we were grateful when the patient had a visitor. The patient couldn’t respond enough to appreciate him, but we certainly could. He was a former friend, a person who had gone through rehab with the patient, and had lived with him for a while in a residential aftercare facility. When the patient had relapsed, the friend had stayed sober, and they had drifted apart. Still, he was someone who knew something about the patient.

In fact, he knew two things. First, he and the patient had in fact discussed health care, and had discussed how much extraordinary care each would be willing to accept. He had heard the patient say that he wouldn’t want to be maintained indefinitely if there were no hope. And second, he knew that the patient had a sister, and he knew what town she lived in. She and the patient had not spoken in a decade or more, largely due to the addiction. Still, we had someone to look for, and we were able to find her.

So, who should speak for this patient? Those of us providing care were not in a position to speak for him. We had no clue what he might want, and only our own opinions (informed, perhaps, but still opinions) about what harmed him and what served his best interest. We could seek a guardian, but that person would know no more than we did, and would have legally limited authority in deciding about the patient’s care. The real choice – at least, the choice that might meaningfully serve and represent the patient – was between the ex-friend who knew him, and the sister whose authority everyone could recognize. So, who should speak for the patient?

In preferring autonomy to other issues, and especially non-maleficence (“first, do no harm”) and beneficence (“act in the patient’s best interest”), we have found ourselves in this position. This case was not as bad as it could be: the truly unbefriended patient leaves us with even fewer options. Still, it represented a dilemma between knowledge of the patient’s wishes without authority, and legal and moral authority to carry out wishes unknown. And because our categories and priorities of “next of kin” are more customary than statutory, the same issues obtain, and can become complicated, in patients with large but conflicted families. Sometimes the child has been raised by grandma, but mother, estranged or struggling or addicted or some combination thereof, is still the immediate parent. Sometimes four adult children have four different opinions. I once cared for a patient visited by four women: his wife, his mother, his ex-wife, and his current girlfriend (the permutations of that were interesting!). Barring a clear Durable Power of Attorney for Health Care (and some people can manage to make even those unclear), we can struggle with the question: who is the best person to speak for the patient?

In this case, we were blessed, and so was the patient. The estranged sister was comfortable with the information provided by the exfriend. She approved – indeed, she virtually delegated her authority to – the decisions of this person who could speak to what the patient would actually walk. She had lost her brother long ago, but she was still prepared to respect his wishes; and she was able to accept the report of those wishes from this exfriend. The patient was given measures for comfort, and was allowed to die naturally (or at least as naturally as modern medicine would allow by this time).

We all work most comfortably when there is a clear statement from the patient established with clear authority to act. When that’s not clear – when the patient is unbefriended, or when there are too many friends and family and too little clear information – we wrestle with how best to serve the patient. We can talk about futility, and policies and laws on futile care can make some things easier. But our overarching moral principle in health care is respect for the person. And when we don’t really have a person, an interacting moral agent, whose wishes we know and so can respect, we still struggle with the central question: who speaks for the patient?