COMMENTARY

Patients Hang on Your Every Word, Says Doc With New Heart

Arthur L. Caplan, PhD

Disclosures

April 09, 2019

This transcript has been edited for clarity.

Hi. I'm Art Caplan. I'm at the Division of Medical Ethics at the NYU Langone Health Center in New York City.

Not too long ago, I had the opportunity to conduct an interview with a friend of mine, Dr Robert Montgomery, who's head of the NYU Langone Transplant Institute. He moved to our institution from Johns Hopkins, where he had established an outstanding record of achievement as a transplant surgeon. I interviewed Dr Montgomery not because of what he had accomplished, but because of what he had gone through.

About 6 months ago, he underwent a heart transplant. The transplant was performed at NYU by one of the individuals he recruited to run the heart transplant program. I thought it would be fascinating to interview him for our medical students. I said to him, "You have performed many transplants. Now you've been through a transplant. Did it change your view of what it's like to receive medical care and to be in the role of patient?" And Dr Montgomery generously agreed to let me talk publicly about his case.

He told me that for some time he's had an underlying, probably genetic heart condition that has caused him literally to die because his heart stops; it had stopped probably a dozen times throughout his life. He's lost family members who have died because of this heart condition. And he felt very lucky that he had received a heart transplant.

Hearts are difficult to get for transplant. I asked whether he thought he got his new heart because of who he is, because of his background. He said no. He was in an experimental program, through which he took additional risk, and that gave him a higher likelihood of getting a heart. He had decided to accept a transplant from an individual who died and had had hepatitis C. He agreed to take that heart even with the possibility of infectious disease, and if he acquired hepatitis C from the donor organ, he would then take medicine to manage or cure the infection.

His heart came from a drug addict who overdosed and who definitely had hepatitis C. And so far, so good; he has not acquired hepatitis C. He felt very confident that today's medicines could keep the hepatitis in check. He has faced death many more times than I was aware of, so taking risks is not something that is unknown to him. But putting that decision aside, he told me two other things that are interesting and worth hearing by any doctor dealing with patients.

First, we need to try to teach patients how to be resilient. They go through so much, particularly with chronic illnesses, that it is vital for them to be able to adapt, rebound, adjust, and go forward in the face of pain, setbacks, and new information that changes old prognoses. He found that the value of resilience—being able to, if you will, go on even in a changing and even dangerous environment and against unknowns—was crucial in a way that he had not fully understood before he himself received the transplant. He said it's important to teach our children resilience; he believes it is an undervalued skill. He believes that we may want to try to work with our patients on resilience, to teach them how to be more resilient as they face the opportunity to get better through healthcare, with all of the challenges that many of our treatments pose.

Second, doctors must understand that patients hang on to every word they say. And what they say is going to make a difference to patients, even if the doctor thinks it's trivial. Even if it's as trivial as saying, "I'll be back in an hour." Patients wait; they expect you back in an hour. If you don't come back in an hour, they get bitterly disappointed even though it may have been a throwaway line. If someone says, "We'll call you with the results within 24 hours" and no one does, the patient feels betrayed. When things like that happened to Dr Montgomery, he felt that people were letting him down or they weren't taking his case seriously. So it is better not to overpromise or raise expectations. Be realistic.

It is also important to realize that sometimes what seems trivial and run-of-the-mill—that the test results will be back soon, or "I'll be back to see you tomorrow morning," or whatever—that is what patients really pay attention to. And they pay much more attention to those sorts of comments than to a lot of the technical information they are presented in terms of informed consent and so on.

So try to understand the importance of resilience. Try to figure out ways to help patients to be resilient, whether that means psychological help, spiritual help, or any kinds of tools and tricks that family members or friends may provide. Also, remember that sometimes it's the trivial and the small stuff that patients pay attention to the most. If you are going to promise someone that you will be back in an hour and you're not coming back in an hour, send them a text, get a message to them. Say, "I'm sorry, I got delayed. I'll see you soon." But don't let the small stuff pass.

I'm Art Caplan, from the Division of Medical Ethics at the NYU School of Medicine. Thanks for watching.

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