COMMENTARY

Having the Talk That Doctors and Patients Dread: End-of-Life Care

Arthur L. Caplan, PhD

Disclosures

April 26, 2016

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I'm Art Caplan from the Division of Medical Ethics at the New York University Langone Medical Center.

Let's talk about something that nobody likes to talk about: getting into discussions with patients about their deaths. I imagine that there are a couple of subjects that might be harder to discuss, but none come to mind right now. A patient's death is at the top of the list of things that I do not like to talk about. Before you email me and say, "Well, I do it," trust me that there are lots of doctors who just do not want to go down this road.

Recently, reimbursement was enacted for physicians to discuss end-of-life care with their patients. Money is supposed to be paid out of the Affordable Care Act (ACA) to help encourage doctors to have these discussions with their patients, which is great. When the ACA was first being debated, you may remember, there was a lot of discussion about death panels and rationing. The idea of having such discussions with your doctor went away as a result, but now the door has reopened. Although limited reimbursement is now being offered, this alone is clearly not enough to address the issue. The question, then, is, what should one do?

The first thing to keep in mind is that your patient may not want to talk about this any more than you do. It's a tough topic and very difficult to get into. It's also important to realize that even if you are not dealing in palliative care, you should be having this discussion. I would guess that the gynecologist is the doctor that young women probably see most often between the ages of 15 and 40. That may be a possible setting for these discussions about dying to first take place. You can ask them what would happen if they were unable to express their wishes, and if they have had this conversation with their family members so that they know what the patient might want.

This is a topic for everybody. It's not something to push off over to end-of-life care specialists. You need to start to figure out what openings are available to get the discussion going. You might point out a news story about someone fighting about a death, or when a celebrity has passed on but left behind instructions. That may be the opening to say, "It's interesting that this celebrity did this. Have you done something like that?" Or you can say, "I know it's a difficult subject, but do you know your parents' wishes or your husband's wishes?" That may be an opportunity to discuss with them what their own wishes are.

Some doctors may fear getting into religious or spiritual issues for which they have no training and may not know what to say. I have no particular training in those areas either, but I do know enough to tell them that these are topics they should raise with their priest, rabbi, or minister. You can point them toward online resources that you have looked at prior, which might be helpful to them.

However, I don't think the involvement of money is going to be enough to change practice. What we need are new ways to support doctors, giving them a template for how to broach the topic, ensuring that they are unafraid to send people elsewhere if they have questions that they are not sure they can answer. Not everyone feels certain of what to say about what happens in the hereafter, which is fine. Depending on the patient, though, there are different places you can direct them to for references or other ways to support their efforts to find out more.

The most important thing we can do about death-and-dying conversations is to say that they are open-ended. They don't have to be about what patients don't want but instead can be about what they do want. Patients need to have some sense of whether they are the type of person who wants aggressive intervention or wants people to back off if they are in a situation where recovery is unlikely.

Patients do not need to get into every detail of what interventions they do and do not want but instead can simply have a general idea. As their doctors, we can ask them to do two things: Pick someone to be their decision-maker and have a conversation with that person to determine whether the patient trusts their values in a situation where the patient cannot speak; and second, we can encourage patients to have a discussion with their family about what their wishes are.

You do not have to cover everything in the short amount of time during an office visit. Instead, the most important thing you can do is set patients up to designate a decision-maker to control their care, particularly if they have a life-threatening illness or disease. Also, you can encourage them to talk about these things with their family, because those are the people who will be coming in to the office if your patient gets seriously ill.

This is not an easy subject, and it's not one that is going to get solved by throwing some reimbursement out there. Maybe if we can understand that we do not have to have all the answers, but that we can direct people toward resources—including their family and friends—it will be easier on everyone who has to have this very difficult conversation.

Thanks for watching.

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