The conversation: When talking about death means talking about life

Dr. Anthony Back remembers precisely the moment he resolved to help fellow doctors learn to talk with their patients—and each other—about dying.

He was a young oncology fellow doing hospital rounds with a group of doctors in training when they came to an empty bed. The attending physician asked a resident what happened to the patient who had been there the day before.

“Oh, she died last night,” the resident said dismissively, then walked on, rounding the corner out of sight.

The group fell silent. Although her death was unexpected, no one wanted to talk about it.

“I thought, wow, this is really awkward,” Back recalled. “That’s how I got interested in the whole issue.”

Twenty-five years later, Back, a medical oncologist who specializes in gastrointestinal cancers and a professor at the University of Washington and Fred Hutchinson Cancer Research Center, has become a sought-after expert on these very conversations. The coauthor of "Mastering Communication with Seriously Ill Patients: Balancing Honesty with Empathy and Hope," he teaches classes and workshops in Seattle and across the country. He recently co-founded a nonprofit group and website, Vitaltalk.org, with free guides to such topics as establishing rapport, responding to emotion and conducting a family conference.  

“There is this huge need for doctors and nurses to know how to do this, but there’s not very much training available,” said Back, 55. “It’s not really about charisma, it’s about having a set of skills—a set of learnable, transferable skills that we should be teaching doctors everywhere.”

 That is also the belief of independent filmmakers Michael Bernhagen and Terry Kaldusdal, who have featured Back in a documentary,  “Consider the Conversation 2: Stories About Cure, Relief and Comfort.” The film, their second on the topic of doctor-patient communication, airs in Seattle on KCTS-TV at 3 p.m. Sunday and on PBS stations across the country.

Back recently sat down to talk about what he’s learned about communicating hard news from his research, talks with ethicists and communications specialists and his experience with his own patients.

FRED HUTCH: Talking about dying is difficult for most people. Do you think it’s more difficult for doctors?

BACK: With cancer doctors, most of the time the doctor and the patient have been together for a while. Very often, patients have benefited from treatment, they’ve gotten some more time, they’ve had some tumor shrinkage. Then for the doctor to have to say, “Well, the treatment has stopped working, there isn’t another treatment that’s really worth trying,” that’s a really hard thing for most doctors. It’s not why they went into oncology. They went into oncology to give people the longshot chance.

Then the other issue is that there are a number of patients who feel so strongly that they’re going to beat the odds that they don’t want to talk about it. Most doctors aren’t trying to make patients acknowledge that they’re dying, but they want them to be a little bit prepared. And patients sometimes say, “Well, gee, it sounds like you’re giving up on me, it sounds like you’re trying to destroy my hope.” And that’s hard for doctors.

FRED HUTCH: So do doctors avoid this by not talking about it?

BACK: I think the more common thing is doctors tell the patients the prognosis with little patient preparation. They give them lots of statistics, and patients often feel overwhelmed by that. Doctors don’t have a sense of how to handle a patient’s reaction or how to prepare the patient to have this kind of a talk.

People used to think that we just needed to be clear with patients about what the odds are of a treatment when no data shows that it will help, but it turns out that’s really not the issue. When people are saying, “You’ve got to do anything you can for me,” it’s really out of emotion, not out of rational thinking. I don’t mean that they’re irrational, but they’re not thinking about the scientific evidence here, they’re just upset and sad. Understanding that there is this emotional subtext to all these conversations really changes your ability to get people to a place where they can talk about it.

FRED HUTCH: How do you acknowledge those emotions? How do you get people to that place?

BACK: Part of it is actually paying really close attention to things people talk about and what they care about. Very often, patients who don’t necessarily want to talk about the statistics will talk about what are the important things that they want to do. They will talk about the important people they want to see. They will talk about a trip they want to take or how they want to spend their time. Paying attention to that is really important because that’s how you can talk to people about how they want to spend their time and help them make decisions that match those values.

We often fall into the trap of thinking it’s just about the survival rates. But you know, when people are nearing the end of a cancer journey, it’s actually not all about the survival rates. It’s about what do you do with the time that you have.

FRED HUTCH: Can you tell me about some of the conversations you’ve had?

I have a patient who’s gone back and forth to the Midwest six times because he’s a bird watcher and he likes to go see the warblers. I love that he comes to talk to me about that. And we use it as a barometer of how he’s doing.

I have another patient who paints. She said, “When I paint, I don’t feel sick.” So I ask her about her painting because that’s a barometer of how she’s doing. My appreciation and paying attention to those things also signals that I think those things are important.

FRED HUTCH:  So the conversation isn’t always directly about dying.

BACK: Very often, the most important part of the conversation is not about dying, it’s actually about what’s important now. Then, as a doctor, I can figure out how I can help you do the most of that.

A lot of people don’t want to talk about dying per se. They know life is limited. They know things are bad. They know they don’t have much time left. But a lot of people don’t want to talk about that explicitly. I think that’s just normal human behavior.

FRED HUTCH:  What’s brilliant about this is you’ve found a way to talk about dying without making them talk about it.  

BACK: We talk about all the things we can do to make sure that you have time at home with your family. All the things we could do to make sure you can do a little more painting. All the things we could do to make sure you can go to Cannon Beach one more time. All the ways that people can be pro-active with the time they have and make memories with their families, when time is uncertain.

FRED HUTCH: Is there interest from other doctors in learning how to do this?

BACK: Actually there is. There’s starting to be a tipping point in what’s happening in palliative care. Doctors in training are telling us that they need to know how to do this. And what the health systems are finding out is that they can have better quality for the same costs or less if they have good palliative care. Communication about making treatment decisions is one of the core pieces of palliative care.

FRED HUTCH:  What do you do when the patient and the family aren’t on the same page in terms of whether to continue treatment?

BACK: A really common thing is when the patient wants to know a limited amount and the family wants to know way more. The family is going, “How am I going to do this?” And so, you know, we solve that by asking patients if it’s OK to talk with the family in more detail, and then I have a talk [privately] with their family.  

It just happened. I have a patient who’s really sick. Her husband is kind of an engineer guy. He wants to know all the details. And she’s not that kind of a person. So I said, “If it’s OK with you, I’ll give him all the numbers he wants, offline. I just want to make sure he feels prepared. His job is to take care of you and if you want to know these numbers later, you call me and I’ll talk to you about them.” I don’t want to make it the family member’s job to tell the patient. But I want to make sure that they have what they need.

FRED HUTCH: What about when the patient is more accepting of the prognosis than the family, and it’s the family who wants you to do more treatment?

BACK: Families sometimes feel that’s their job. Their job is to never give up. Part of [addressing this] is just recognizing that they’re being a good mother, a good father, a good daughter, and that they know that we see that they’re doing their job.

FRED HUTCH: You make it clear that there isn’t just one conversation. You’ve talked about how important it is for doctors to “bear witness to the end,” to not just have a hard conversation but actually say good-bye to their patients.

BACK:  Doctors often think, “Gee, if I’m not prescribing more cancer treatment, then there’s nothing for me to do.”  But what we’ve learned from studies and follow-up interviews over time is that patients really feel it if they don’t see the doctor again. A whole bunch of patients said [that after] they went to their last chemo visit, they never saw the oncologist again. They went to hospice, and they felt abandoned.

Part of that is clinicians don’t know what to say. They feel really awkward about it. But the whole saying goodbye thing is not so much about saying “I’m not going to see you again.” We teach people it’s more about appreciating what you enjoyed about that person.  Appreciating how much work they’ve done being a patient, because it’s a lot of work to be a patient.  Those kinds of appreciations are things that are easy to share.

FRED HUTCH: The subtitle of the PBS documentary is “Stories About Cure, Relief, Comfort.”  Do we sometimes forget about the last two?

BACK:  They just don’t get as much air time. I wish that what we offered people could be broader. The importance of a documentary like this is that it models for people that these conversations are very possible with their families and their doctors. Acknowledging where you are in your illness doesn’t mean you’re giving up. It won’t destroy you and it won’t destroy your family, and in fact a lot of good things come out of it. People don’t realize that because it’s so scary at first. Even though they’re awkward, a lot of good things come out of them.

FRED HUTCH: How has your work affected how you think about your own life and death?

BACK: It’s been a profound influence. I found that i needed to make sense of my own spirituality, and figuring this out led me to become a Zen practitioner about 15 years ago. Zen offers a method for learning to live in the face of massive uncertainty, imperfection, and unfinishedness (i.e. the human condition) — probably it’s not for everyone but i have found it to be a well of compassion, love, and spontaneity. 

FRED HUTCH: What advice would you have for patients who want to have this kind of talk, but find that their doctor is not responsive?

BACK: Living gracefully with cancer is a matter of surrounding yourself with people who can support you with medical expertise, wisdom, openness and love. You will probably not find all of these things in one person, whether they are a medical professional or not. Try bringing someone else to your doctor’s visit. Pick someone who can represent you -- your questions, fears, hopes --and who can set their own stuff aside temporarily. (So this might not be the person who you’re closest to in the world -- they have too much at stake.) Tell this person you are bringing that their job is to suss out what the doctor really thinks, and to help you figure out what your options are, and how you can do the most of what you love in the time you’ve got. 

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