Who Should Decide for Cognitively Impaired Patient: Ethicist

This transcript has been edited for clarity. Hi. I’m Art Caplan. I'm at the Section on Medical Ethics at NYU Grossman School of Medicine, New York City. Dealing with adult patients who have lost their cognitive capacity so that they're not competent anymore is one of the toughest areas for bioethics. Let me illustrate with a case briefly.A65-year-old female who had already suffered two falls and a hip fracture experienced a sudden, severe stroke. Prior to that stroke, she had told her family very informally, sometimes during casual discussions at meals or when watching a medical TV show that brought up the topic of cognitive loss in adults, that she didn't want to have anything to do with nursing homes or feeding tubes under any circumstances. She didn't want that. When she got to the hospital, the family was told that, given her situation, they needed to put in a feeding tube in order to avoid her aspirating and harming herself. She was likely headed toward a nursing home placement. When all this happened, she had no formal advanced directive. She didn't have anything in writing about picking a decision maker, but the family, all there, did agree that she had said those things about not wanting nursing home care or a feeding tube. The issue comes up for this woman who can't any longer express her wishes and desires as to what should happen. In a situation like this, the first thing I think about is who should be making decisions when somebody has clearly lost capacity to voice their values as they see them when in the hospital. A surrogate decision maker has to be appointed. I don't mean a group or a family; I mean a single person who everyone will say ultimately is going to make the call when they get input from other family members, friends, the physicians, and whoever they want to get input from.Indeed, many states have laws about who should become the surrogate decision maker exactly in this kind of situation. Often they go spouse, parent, and then sibling. That's the order that nearly all the states have for who would be picked as the surrogate decision maker. Let me say that it's possible to disqualify someone as a surrogate decision maker if you think that they have perhaps not the best interest of the person in mind or they have a conflict of interest financially. Maybe they're not competent themselves to have known the person well enough or whatever. Generally speaking, I'm going to say spouses, when they exist, take precedent and maybe even people who are in spouse-like roles, such as a gay couple or a common-law marriage, over others.What I would be looking at is who can we get. If there's disagreement about who that should be, I would ask the healthcare treating professionals to try and make their decision and then take it to an ethics committee, all of which exist at nursing homes and hospitals, and ask them to vet and then verify the selection of a surrogate. We do need someone to make decisions, not only about immediate care, but as I'll say in a minute, things that may happen down the road. What happens if, in this case, she says she doesn't want anything? It could be that the doctors are thinking, and I think some of them did for this case, that she might show more recovery than the bad stroke might indicate that she would suffer. In other words, maybe it's not as bad as they think. In this situation, I think a healthcare team is justified in not following the surrogates request to stop, if that's what they felt ought to happen because of what she had said before — because they may think, in her best interest, perhaps she would do okay on a feeding tube and a nursing home placement and then start to show some recovery. That leads to the crucial point that I want to make. What I found in my experience is once you've got a decision maker, and once you get concurrence between them and the healthcare team about what to do, even if the surrogate decision maker wants to stop or not allow things to happen, one thing that the healthcare team can and should do is offer what I'll call a limited trial.See how she does for a short period on a feeding tube. See how she does for a short period on a feeding tube in a nursing home. If there isn't progress after, let's say a month or 2 months, say to the surrogate decision maker and the family, then if there's no progress, we will revisit and as needed, stop or withdraw.What sometimes is missed is that the fight goes, either we do this and it goes on forever or until she dies, or we don't do it, and that's it. I think there is a third path when there is more optimism about recovery. That is, try it, agree upon an endpoint, agree upon a time at which you will revisit the decision, and promise that you will, as a healthcare team and healthcare professional, follow what is indicated after that period of time has passed in terms of whether there's been progress or recovery or not. I’m Art Caplan, at the Division of Medical Ethics at NYU Grossman School of Medicine. Thanks for watching.