Friendless & Voiceless in Massachusetts

Secure in his chair on a Boston critical care ward, the middle-aged man was getting his hair cut. This meant nothing to him. To the best of a doctor’s ability to know such a thing, there was no meaning-making left for the man, since the heart attack that had rendered him “probably permanently unconscious.”

And yet the haircut meant something to the hospital staffer who provided it. Indeed, it meant everything. In particular, it meant someone in the worst of circumstances and alone in the world could find care at this hospital. Not just treatment, but care. And that’s good for morale.

What is not good for morale is continuing treatment that -- again, to the best of a doctor’s ability to know such a thing -- does a patient no good, and may do harm. For this patient, that transition loomed.

The man strapped into the chair, unable to sit upright on his own, is an immigrant from the Far East with no apparent family in this country. He has no insurance and little money. He clearly did not anticipate a catastrophic heart attack, and so put nothing in writing about his wishes for medical care. Neither had he designated someone to speak for him in such an event.

He is what is known as an unrepresented patient, or a patient without a surrogate decision-maker. Both terms sound coldly clinical and lawyerly to me. Neither sounds especially human.

I prefer another term sometimes used: unbefriended. This term strikes some colleagues on the Harvard Community Ethics Committee as overly judgmental, as though the patient were unworthy of friends. But to me unbefriended means he has no one who knows or cares enough to speak for him, and desperately needs someone. Friendless and voiceless is no way to be.

Autonomy is an important principle in medical ethics, but what is autonomy for a person no longer able to think or speak, and with no one to do that for him? What treatment is in his best interest -- Nothing? Everything? Till when? And who should decide? Should it matter that he has neither money nor insurance?

This man’s care, ongoing when it was presented during an ethics consortium at Harvard Medical School’s Countway Library, seemed more a quandary than a question of ethics. Indeed, ethical issues may relate more to the care team, and its morale when doing good or doing harm becomes especially muddled.

Hospitals, especially intensive or critical care wards, are seeing more of this type of patient, often homeless substance abusers who have scared off anyone who might once have cared for them. How does a hospital staff serve the best interests of a patient if they don’t know the first thing about that patient’s values, and have no easy way of finding out?

The man will never leave the hospital. Because he is uninsured, no rehab facility will take him. Till miracle or death, he is the hospital’s responsibility.

What this hospital staff knows is that the patient is “probably permanently unconscious,” but his heart is strong. He already survived emergency surgery to clear an airway obstruction.

With the patient’s mobile phone, social workers did remarkable detective work. They found someone in New York transient housing who knew the patient by name and, though unwilling or unable to step into the decision-making void, pointed them toward the estranged wife in the Far East. She spoke no English and was unwilling to decide for her ex-husband. The social workers discovered a son who knew nothing of his father. 

A sibling of the patient also was found, and through an interpreter, gave the hospital permission to perform a life-sustaining surgical procedure. It was hoped there might be time for the son to find the resources to travel to meet his father, which became a factor in considering the patient’s best interests.

When there is no surrogate decision-maker, hospitals in Massachusetts are left to decide what is in such a patient’s best interests or to request a court-appointed guardian. But the latter process is slow, often too slow to effectively help either the patient or those caring for him.

In such cases, appointed guardians in Massachusetts tend to “err on the side of life,” which is often the best way to err. But that can come to mean erring on the side of harm, and treatment that prolongs suffering.

Might it sometimes be unethical, and unacceptable, to err on the side of life?

That could be the essential question for the Community Ethics Committee as we study patients without surrogates, also known as the unrepresented, or as I prefer to think of them: the unbefriended.