What are the biggest challenges in talking to patients about their mortality?

The biggest challenges in talking to patients about their mortality are time, especially if the patient has not thought about their mortality before, and concern that, in bringing up the topic of mortality, the patient would think that their doctor was “giving up.” So making sure that they don’t draw the wrong conclusion takes significant discussion. A talk of 20 or 30 minutes is a lot to add in the middle of making rounds at the hospital, or in the middle of a busy clinic morning. And you certainly don’t want to bring it up as an afterthought, “Oh, by the way, what do you want us to do if your heart stops?” So time is a huge challenge.

I have watched an evolution over time of the willingness to discuss death with patients.

In medical school, what is the approach to teaching students how to talk about mortality and end-of-life issues with patients?

In medical school over 30 years ago, I don’t recall any instruction about discussing mortality. When I was an intern, some people would be admitted to the hospital to die. They weren’t able to be cared for at home, and you expected them to die within a few days. They would come in because they needed pain control, or the family just couldn’t handle their illness. While it was acknowledged that the patient was expected to die, we did not officially say to not resuscitate them. Instead, they had a little mark on their charts that all the nurses knew meant a “slow-code.” If the patient’s heart or breathing stopped, a code was called, we went through the motions of doing something, then called off the code. It was a show of “Hey, we’re not giving up,” but we also didn’t want to look like we were torturing the patient needlessly. It was ridiculous. By the end of my residency we had official do not resuscitate (DNR) orders. Now, after an appropriate discussion, you can write an order to “do not intubate, do not resuscitate,” meaning we’re not going to take those next steps that would send someone to the ICU, because the patient does not want that or understands that it would be futile, and wants to die with dignity.

I have watched an evolution over time of the willingness to discuss death with patients. It has become more the norm to discuss it. Later in my career, I didn’t feel that patients were as alarmed when I brought it up as they were in the beginning of my career.

How can we increase dialogues around mortality with doctors and patients?

Over time it has to become more acceptable for both doctors and patients to discuss death and end-of-life issues and desires. Many people are glad to have that conversation. A number of times a patient has said to me, “I don’t want to be like Uncle Joe.” They had watched a relative in the ICU go through multiple days of multiple interventions and die anyway. They felt as if they were just tortured for the last days or weeks of their lives and they didn’t want to die that way. And some people would be able to recognize that and say, no, I’m not going to do aggressive things for no benefit. But other people weren’t able to translate it into decision-making; they just knew they didn’t want to end up like that, and it wasn’t always clear to them how you avoided it, which is why more discussion is essential. Some people do understand, but they want everything done under every circumstance. I had one elderly patient who said, “Life is sweet,” anytime I brought up mortality or end-of-life issues. That was always her response regardless of the circumstances. So some people fight forever just for life itself. And as long as they fully understand all the consequences, that is their choice to make.

Do you see wanting to live no matter what as stemming from fear of death, or more a denial that death will happen to them?

I think it’s a continuum. For some people it’s fear, for others it’s maybe that they don’t think it’s going to happen for a while, so they’re procrastinating. And other people are like the patient who said, “Life is sweet,” meaning, they put being alive over anything else. And I can’t really say that it is fear or denial, it’s just wanting to live. Another patient said, “I believe in miracles.” So that’s their belief. If their belief is that miracles can happen, who am I to try to change their belief? Now, I can educate them. I can say to them, “We know from experience that people in your situation are extremely unlikely to come through this type of illness.” But they want to go with the tiny chance that their experience will be different. And we have to respect that.

Medicine has evolved in huge ways, but it’s slow, especially when it’s something with resistance to it, like discussions of mortality.

What is one tangible step people can take to confront denial and have a better end to their lives?

I always pushed patients to have advance directives that at least name somebody who can make decisions for them in the event that they cannot make decisions themselves. I would tell them to make sure this person knows how you feel about treatment and what you want, because you’re turning over decisions to them. I also stressed that that person is not making the decision for you, they’re making the decision that they think you would make. And that takes some of the burden off that person in that moment. It’s really important to have those conversations ahead of time.

It would be nice if there was a push to discuss and fill out advance directives the same way there is a push for people to get cancer screening, and then document the discussion. Medicine has evolved in huge ways, but it’s slow, especially when it’s something with resistance to it, like discussions of mortality. It’s slow to be accepted, but good progress has been made.