Mar 31, 2017

Interview Transcript

Interviewer: The importance of having end-of-life care conversations with your patients, that's next on The Scope.

Announcer: These are the conversations happening inside healthcare that are going to transform healthcare. "The Health Care Insider" is on The Scope.

Interviewer: As a physician, it can be a very difficult conversation to have with a patient, but it could really make a difference in the quality of the last days of their life. I'm talking about end-of-life conversations. Dr. Anna Beck is Director of Supportive Oncology and Survivorship at Huntsman Cancer Institute. Welcome. So it can be a really tough conversation for doctors to have with patients. Why is that?

Dr. Beck: There are so many reasons. I think, first and foremost, what most physicians say is, "I hate to have this conversation because I feel like I'm taking away hope from my patient." And, in reality, you're not. You're actually . . . if you can do the conversation well, you give that patient and their caregiver a safe space to talk about some of the fears that they are confronting when they really are at the end of their disease trajectory. And learning how to do that, how to create that safe space and how to have these conversations without causing distress to both yourself and your patients, that's a skill that can be learned.

Interviewer: Yeah. I think you're right. That's a skill that you not necessarily are born with. You might go into that situation thinking, "Ha, I'm just not equipped for this."

Dr. Beck: Right.

Interviewer: And probably you're not.

Dr. Beck: Right. Right.

Interviewer: Because a lot of physicians didn't get it right. What are the advantages? Why is it really important that physicians kind of get over this barrier and have those conversations?

Dr. Beck: Patients deserve to have the best end-of-life care they can possibly have. And most patients will not want to have an end-of-life that occurs in the intensive care unit with various tubes in their arms or in their throats or that they can't talk. If you talk with most patients, the end-of-life that people prefer to have is at home or in a comfortable environment with their symptoms well managed, their family members and their caregivers well supported and a very peaceful experience, where they can have closure with family and friends. That's what most people envision when they talk about their end-of-life. Very few people really want to have it occur in the intensive care unit.

Interviewer: It seems to me that it really comes down to this whole conversation. What are the patient's goals of the care that they are to receive? And I think I don't know. As an outsider and a layperson, it seems like a lot of times we assume those goals are to prolong the life as long as possible.

Dr. Beck: Correct.

Interviewer: And maybe that's not exactly the best goal of care. Beyond what we're talking about here, it's an interesting question for all aspects of healthcare. So you mentioned a little bit of what a lot of patient's goals are. Can you go into that a little bit more in-depth?

Dr. Beck: Yeah. That actually is a really good question. I think, as physicians, we tend to assume that everybody's goal is to have life-prolonging therapy. But that's not always the case. And you'll never know unless you actually ask your patients what their goals are and what their hopes are. So that's the whole point of trying to teach the conversation and how to have this conversation is to explore exactly what it is that your patient and their caregivers are hoping for.

In addition to having a peaceful passing and having symptoms well managed, a lot of times patients want to have freedom from side effects of therapy that's no longer helping them. They want to have more support for their family at home. They don't want to financially devastate their family by, you know, continuing to endorse therapy that's not helping them, that may be financially prohibitive. So if you don't ask and you don't learn how to create a safe place where everybody can talk about these worries and fears and hopes and goals, you'll never understand exactly what it is that they're looking for.

Interviewer: I'd imagine it would be difficult for a physician as to when to bring this up. Like at what point in the trajectory of the patient would you bring that up? And that's what I kind of like to talk about for this next little section, is maybe some nuts and bolts tips for physicians like when to talk about it, how to initiate the conversation. So when?

Dr. Beck: Another great question. I personally have a few kinds of triggers in my mind. So I'm an oncologist by trade. If I have a patient who has been diagnosed with an incurable stage of their illness, so a Stage IV disease or recurring cancers, that's a trigger for me to do it. Any time their disease progresses or there is a change in their treatment, I think that's a reason to do it.

Another personal trigger is if a patient has unplanned hospitalization for side effects or disease progression, that's another reason to think about having the conversation. This is a conversation that should be had multiple times throughout the patient's disease trajectory, not just when you think the end is at hand. This should be had frequently and often and with as many family members present in the room as possible.

Interviewer: It's beginning to occur to me that we're framing it as the end-of-life care conversation, but maybe that's not the best way for the physician to approach it. Maybe the best way for the physician to approach it is, "Let's have a conversation about what your goals are."

Dr. Beck: Goals of your therapy.

Interviewer: The goals of your therapy. What is it that you would like to do? Is it to live as long as possible? Is it to enjoy the best quality of life and if there is some pain, there is some pain?

Dr. Beck: Exactly.

Interviewer: Yeah. And everybody is going to be a little different. Give me some other ideas of how you might be able to frame that conversation or some words to use.

Dr. Beck: I tend to follow the Serious Illness Conversation Guide, which is a guide that was actually promoted by Ariadne Labs and Atul Gawande. I think most people are familiar with Atul Gawande's book "Being Mortal." When Atul Gawande was confronted with a serious illness in his father and he was exposed to the palliative care world, he became very impressed of the fact that there's a lot of things that palliative care docs do that are not very well documented.

Atul, being a checklist kind of guy, he helped work with the palliative care docs at Dana-Farber and Harvard and developed an actual checklist of questions that are designed to help promote these conversations and make that safe space so that patients and their caregivers can actually feel comfortable talking about something that can be difficult to talk about.

So, for example, the cornerstone of the conversation begins with an understanding of a patient's prognosis. People have different goals at different points in their disease trajectory. I've had patients who have goals of, you know, creating scrapbooks and being there for when their family members return from a mission. But once they understand that their prognosis may be weeks to months, they have a completely different set of goals.

Another example would be therapy. I've had some patients who say, "Well, if I really only have weeks to months left to live and this course of treatment isn't going to prolong that or make me feel any better, I don't really want to do that."

So understanding prognosis is a key point. There are other things. So what are the things that you worry about? What are the things that you're fearful about? A lot of times patients will say, "I'm worried about making my family destitute because all these healthcare costs are going up. I worry about how my wife is going to cope when I'm not around. I worry about how my husband and my kids are going to relate to each other after I'm gone."

Another question I think gets a lot of traction is, what are the things that make your life worth living? So if people say, "Oh, the things that make my life worth living are being able to go to my grandson's lacrosse games or traveling to Moab," and yet they are on treatments that require them to be in the infusion center every week for several hours a week, it's like these things are very congruent. And unless you ask and say, "Okay, so if your treatments aren't helping you achieve the goals or the things that make your life worth living, is this really something that you want to continue to do?"

Interviewer: Another challenge is you've got a lot of people involved in this decision. I mean, ultimately, I guess, the patient probably should be the center of it, but you've got the patient's families who would have different agendas. You've got, you know, caregivers. There's a statistic that you had provided with me when advanced cancer patients were at end-of-life, surrogate decision makers and more likely to choose more aggressive treatments. So that really highlights the importance of getting everybody on the same page. How does a physician do that?

Dr. Beck: I always take advantage of the fact that as patients get more frail, they generally have another family member in the room with them and I actually prefer that. And when I have these conversations, it's a little bit amusing, but also a little bit regretful. When we talk about patient's fears or hopes or goals and then I say things like, "Well, based on what you've told me, I would make these sorts of recommendations about how we should proceed at this point." And then my next question is, "How much does your family member know about your hopes and goals and fears?" And the patient always says, "Oh, they know everything." And the family member's over there going, "I did not know any of this."

Interviewer: That's probably a lot more common than you would think. There is a saying in communication that if something can go wrong while communicating it will.

Dr. Beck: Yes. Yes.

Interviewer: Yeah.

Dr. Beck: I like to tell the story when I am talking to providers about the importance of getting family members involved in these conversations, my own personal story is that when my mother was at her end-of-life and she was actually in a coma and, you know, not able to participate in any decisions. And I remember commenting to my younger brother, "You know, I think it's a good thing that mom wanted to be cremated. It's the dead of winter now. We can have a much nicer ceremony when spring breaks." And my younger brother said, "She's not going to be cremated."

And I said, "Well, that's what she's always wanted. She said that for years." And he said, "Not to me, she didn't. She's not going to be cremated." And we eventually sorted it all out. But my mother never thought that she needed to communicate her wishes to everybody in the family. She just chose to confide in me. And then it became my job to become her spokesperson and her advocate with the remainder of the family.

It was an uncomfortable position to be in, and I don't think that patients ever want to put their surrogate in that position. So as long as these conversations are documented and brought up frequently and shared amongst every family member that may have an opinion, then that surrogate's decision is so much easier.

Interviewer: So there probably are a lot of other barriers that would keep physicians from doing this, whether it's stigmas and society. In your instance, you know, beating cancer is always the end goal, right?

Dr. Beck: Right.

Interviewer: You've got to win the war against cancer. But at the end of it, it sounds like that regardless of any reason a physician can come up with to not have the conversation, they really need to figure out, "How do I get past that to have the conversation?"

Dr. Beck: Yeah. I think there are two components to that. Number one, I think, physicians feel that if they bring up this conversation that they're taking away hope.

Interviewer: Yeah.

Dr. Beck: But, in reality, you're actually providing hope because when patients say, "Yeah, I'm not ready to give up. I still want to be alive," then say, "You know, what is it that you're living for?" "Well, I'm living for the return of my grandson from his mission. I am living so that I can spend more time with my family." So those are the things that you now will focus on rather than giving them therapy that's not helping them achieve those goals. So that's how I address the hope issue. And actually, you wind up providing them with so much more hope when you focus on the things that they truly are hopeful for.

The second part of that is teaching providers how to have these conversations. I mean they are sensitive and they can be challenging and they are usually emotion-laden. But that doesn't mean that they turn out bad or that patients wind up being resentful or angry or caregivers. In fact, the evidence is quite the opposite. If you can do these conversations with skill and compassion, patients appreciate them, as do caregivers, and people don't walk away feeling like they have had hope taken away from them.

Interviewer: First tip for a physician that's not used to doing this to get past that first time?

Dr. Beck: Yeah, practice.

Interviewer: Just do it.

Dr. Beck: It does feel awkward. Any skill that you take on is going to feel awkward. I mean think about the last time you picked up a new skill, skiing or trying a new recipe or playing the piano. I mean, you feel awkward doing it initially. But if you can make a commitment to trying it, to working with maybe colleagues and practicing with colleagues, work with communication skills, training experts so that you learn these skills and it doesn't take a lot of time and then practicing it.

You'll find that you become very skilled and the conversations actually become, well, I liken it to a hammer. If you've got a hammer, everything looks like it's got a nail, you know. Once you've got a skill, you can find all sorts of ways to continue to keep this conversation alive within your practice.

Announcer: Be a part of the conversation that transforms healthcare. Leave a comment and tell us what you're thinking. The Health Care Insider is a production of, University of Utah Health Sciences Radio.

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