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09/16/2017

The unbefriended and their doctors

There is a rapidly growing class of uniquely vulnerable patients showing up on our hospital doorsteps. Referred to as the unbefriended, or more prosaically as the unrepresented, these are patients who have no capacity to make medical decisions themselves, have no advance directives, and have no family or friends or anybody else on the face of the earth to speak for them. It is as if they dropped out of the sky, and we cannot find anyone with enough of a human connection to them to help us know what they think or desire.

There is great tragedy in reaching a point in life where there is seemingly nobody who knows you or cares about you. The tragedy is often felt keenly by those who provide medical care to such patients. If a patient cannot make decisions for themselves, and if they have no advance directive, and if there is nobody who knows them to make surrogate judgments regarding their care, we default to the “best interest” standard for making decisions: What course of action is in the best interest of this patient? Which leads to the next question, Who decides what is in the patient’s best interest? One can defer to the courts and pursue legal guardianship. However, in my state at least, such a process is neither timely nor inexpensive, and the chances are slim that a public guardian with an already impossible caseload will take the time to get to know the particulars of a patient’s condition in order to make a reasoned decision.

If not a legal guardian, then it is the care team that must decide: in particular, the burden falls to the attending physician. In any situation, it can be difficult to do things to patients without their explicit consent. In situations where withdrawing life-sustaining treatment is on the table, it becomes especially difficult. Even in cases where it is clear that withdrawing life-sustaining treatment is in the patient’s best interest — when the burdens of treatments far outweigh any potential benefit, when the treatments don’t actually treat anything — a thoughtful, well-meaning physician might torture herself with doubts: Are we doing this because the patient is seen as a burden to the system? Are we taking a step down a slippery slope?

Nobody should feel as though they have to make such a decision alone. Other care team members can contribute to the decision-making process, of course. Ethics committees can help to support the physician on an ad hoc basis. But the scope of this problem will only grow as the population ages. In order to protect these extremely vulnerable patients, resources should be made available to provide easily-accessible, compassionate, wise third-party decision-makers who will protect both patient and physician. In a few places accommodations have been made on an individual hospital or county-wide basis. However it is done, action should be taken to ensure that these, perhaps some of the most vulnerable patients outside of the womb, are treated within the medical milieu as people with worth and dignity, and that those taking care of them are not carrying momentous decision-making burdens alone.

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