End-of-life conversations: Embrace the responsibility [PODCAST]

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“For physicians who lack experience in end-of-life counseling, the process can be daunting at the beginning. However, they can be confident that once they have obtained the proper training, preparation, and experience, these conversations will be among the most fulfilling of their careers. By regarding end-of-life planning as a shared responsibility, physicians can become more well-rounded professionally and help patients conquer their most profound fears.

It’s time to start the conversation.”

Caroline DeFilippo is an internal medicine physician.

She shares her story and discusses her KevinMD article, “End-of-life conversations: Why physicians should embrace the responsibility.”

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Hosted by Kevin Pho, MD, The Podcast by KevinMD shares the stories of the many who intersect with our health care system but are rarely heard from.

Transcript

Kevin Pho: Hi, and welcome to the show, where we share the stories of the many who intersect with our health care system but are rarely heard from. My name is Kevin Pho, founder and editor of KevinMD. Today on the show, we have Caroline DeFilippo. She is an internal medicine physician, and she wrote the KevinMD article “End-of-life conversations: Why physicians should embrace the responsibility.” Caroline, welcome to the show.

Caroline DeFilippo: Thank you, really happy to be here today, and thanks for picking up this topic. It’s an important one we should be talking about.

Kevin Pho: And we’ll get into your article in a little bit, but first off, can you share your story and journey to where you are today?

Caroline DeFilippo: Like so many other people, my journey is not simple. I don’t think any of us really wind up in these fields with an easy or straightforward journey. I’m one of those people who wound up with an interest in population health, public health, and medicine, and so I’ve always sort of looked at how you can do both together. When I wound up in medical school, I actually did my master’s in public health at the same time, with a strong interest in primary care, because I knew primary care was the mechanism by which we can really affect not only the individuals behind that exam room door, but also think about chronic disease, end-of-life care, and disparities in care.

So I sort of took my training, which happened to be at Mount Sinai, which is a palliative mecca, and learned all these principles of both individual, one-on-one patient care and population health care together. Since finishing my training, for the last decade or so, I’ve been working in private practices, trying to put together this blended model where you can both teach primary care providers how to think about those patients and how to think more broadly about managing their populations well. This transition occurred during the time when value-based medicine became real and became palpable. So I am an internist who lives in this world of direct patient care, but who also lives in this world of how we affect and help our public health more generally, and have mechanisms to do it.

It all connects to palliative medicine, because when I’m in there with a patient who is really an end-stage demented patient who’s in and out of nursing homes, suddenly it becomes so obvious to say our system isn’t working right. How do we not realize all these opportunities where we could have redirected this patient’s care, treated them differently? When you look at a patient with an advanced cancer diagnosis, you know what the end of the story is, and we all predicted it, but their path there was not as smooth as it could have been. It suddenly became really clear to me that we have so many opportunities in how we deal with end-of-life care, how we manage advance care planning, and how it’s such a shared responsibility. So that’s really what prompted me to get interested in this. I’ve had all these different, varied backgrounds that came together, and I realized we have a huge opportunity in this outpatient setting to do better.

Kevin Pho: So from your unique lens as a primary care physician with direct patient care, and also that broader population health lens, share some of the biggest challenges. Why can’t we get both of those closer together?

Caroline DeFilippo: Because our goals aren’t aligned. It’s really quite simple. As long as we live in worlds where hospitals are looking to move patients through the hospital system relatively quickly, with or without a communicating EMR to the outpatient system, we’re all going to be working with different goals. There are so many different barriers in place. Some of it is systems, and I think those are not new stories or new concepts to anybody listening to this podcast.

But a lot of it’s about shared communication. I can’t tell you how many times I have had challenging conversations with patients. Perhaps there is a DNR form filled out, there’s a health care proxy, there’s a whole living will, massive discussions, and they wind up in an emergency room and nobody knows about those conversations. The patient’s vulnerable, the patient’s scared, the patient perhaps is nonverbal now, and the loved ones who weren’t present don’t realize all the work we had put in place. So there are communication challenges among health care providers, but even among families.

And the third layer is that it’s a hard conversation. Nobody’s really excited to talk about these difficult things, but the reality is this comes up every day. Every day, we have so many missed opportunities around these concepts, and you just scratch your head and say, “We can do better.” It’s harder to do this well than it is to just perpetuate the patient going back in the hospital, going back in the nursing home. It actually takes effort to stop. I call it this proverbial ball that’s rolling down a hill, and it just snowballs, right? And it actually takes effort to say, “Hang on. Is this what we really want to do? Can we just all take a pause, regroup, understand where we are, and figure out what directions best align with the patient’s needs?” Actually, not surprisingly, that often aligns with low-cost care as well. Good-quality, low-cost care: They’re often one and the same. But it takes work to do it well.

Kevin Pho: All right, let’s transition now into the KevinMD article that you wrote. This was back in November. It’s titled “End-of-life conversations: Why physicians should embrace the responsibility.” Now, for those who didn’t read the article, can you just walk my audience through it and share the story of why you decided to write it?

Caroline DeFilippo: Yeah. This article came out in part triggered by the COVID pandemic. We saw so many patients who were struggling, who didn’t have plans in place, and suddenly it was this crisis for all these patients. We had no idea how to handle it, and we had no idea what their wishes were, and they were sick and they were suffering, and we wanted to figure out the best ways to meet their needs. And what it stemmed was this really big discussion. I come from an outpatient world, and I live in an outpatient world, and so many of us have not had the opportunity to have these conversations with our patients.

So this article is really a call to action to say it’s not as hard as you think. It’s actually very achievable. Our patients are eager to talk about these issues. They’re actually looking to us, and in COVID more than ever, to say, “Hey, what are you thinking? Are you worried, or are you scared? What matters to you?” Patients want our doctors to do a great job at making a diagnosis, finding that rare disease, and managing it well, but they also want us to talk to them. They want us to know them. They want us to understand what’s important to them. At times, those feel like two very different paths, because they require two very different types of skills from us, but they can be done together.

So I think this article is to say: Be that awesome academic clinician, know all the nuances, but also know your patients and know who they are. Know what makes them tick, with respect specifically to their end-of-life planning, because it’s really going to make a difference in providing excellent care for them. So the goal of the article is to say anybody can own this process, all of us should own this process, and there are specific tools that can help you through it.

And the biggest takeaway for me personally related to all this is that it’s actually incredibly satisfying. We think about burnout, we think about physicians feeling undervalued, mistreated, misused, whatever words you want to use out there. But suddenly you connect with the patient around an issue like this, and the reason for this calling, the reason why I get up early, why I’m there on weekends, it all becomes crystal clear. Talk about service: This is the ultimate feeling of service, and changing a patient’s trajectory in their life is incredibly meaningful.

Kevin Pho: Now, one of the things you mentioned earlier is missed opportunities when it comes to end-of-life discussions and advance directives. So from your experience and what you’ve seen, what are the most common missed opportunities that physicians encounter when it comes to end-of-life discussions?

Caroline DeFilippo: Our gut as a clinician is incredibly powerful, and I think so often we can all say, “I know this isn’t going well,” but a lot of times we suppress the gut. We look for more data, we look for the next scan, whatever it is, and we just keep going on that road, that path that we know we’re trained to do well. I think the biggest missed opportunity is: Listen to your gut. If you know there’s something that’s not going well with this patient, hear that, and then take that step to do something with it.

So it’s not as simple to say, “I’m worried Mrs. Jones might not be here next year. Things don’t look good.” What are you going to do about it? Raise the conversation. Mrs. Jones isn’t prepared to hear it. Figure out who her next of kin is, who is the appropriate person who she would want to have that conversation with. We can help plan for these circumstances, and we can do that in a positive way.

I think there’s such a big misconception that these are negative conversations to happen, that the patients will be depressed, feeling like their doc wants them to die. Far from it. These can actually be some of the happiest, most uplifting conversations, when I say, “I’m with you. We are going to do everything we can to keep you well, but I want to have a plan B in case things don’t go the way we feel they might, and I want to make sure we’re aligned on that plan B.” And suddenly, the relief. Their shoulders drop. They say, “Thank God. I’ve been worried about it too. I’ve been reading. I know pancreatic cancer isn’t good, and it’s on my mind. I had a friend, a sister,” whomever. And suddenly you get that connection and say, “OK, so here’s plan A, and here’s plan B. Let’s make sure we’ve got both of them in place.”

So I think the missed opportunity is taking action based on that sixth sense that we’ve all honed as clinicians, and doing more than just what seems easy to do. It’s going to be hard, and it’s going to take time, but you can bill for it, it’s satisfying, and your patients, oh my goodness, you will get so much gratitude, both personally and professionally, from it.

Kevin Pho: Now, that’s a great tip in terms of putting a little bit more of a positive slant on the conversation. What are some other actionable tips that are not immediately obvious to a lot of physicians when it comes to initiating or going through these end-of-life conversations?

Caroline DeFilippo: So, a simple one, very palpable: I work in an outpatient setting, and you can bill for it. I hate to talk about billing, but we have to, right? These are billable conversations.

In the telehealth world we live in, they are fantastic to be done via telehealth. Nothing replicates the face-to-face experience with the patient, but I’ve got to tell you, for this type of conversation, especially with a patient you already have a relationship with, I actually find sometimes they go better with telehealth. They’re in their home, they’re comfortable, they have as many or as few people present as they want, and you get a sense of what their home is like. I mean, I’ve had telehealth end-of-life conversations with patients with their cats present, because that was important to them, and I feel like that is a more powerful conversation and discussion. So number one, bill for it. Number two, use the technology we have, because it can actually get us reaching further into our patients’ lives, particularly our sort of chronically, critically ill, homebound patients. We can now be a part of their care in a much more meaningful way.

Kevin Pho: And what about physicians who aren’t in primary care, specialists, proceduralists? What’s their role in terms of advance directives and the end-of-life conversation?

Caroline DeFilippo: Great question. I’m going to answer as an internist, right, which is to say everybody’s got a role here, and we can hear the feedback of others on that. But the reality is we all have a role. It’s a shared responsibility, and I think each of us brings to this discussion what we are comfortable bringing to it. But if you don’t open the door to the discussion, even if it’s to say, “I’m worried about you. I see you’ve been in the hospital a lot. Have you talked anymore about this? What are you worried about?” Opening the door to the conversation. You may not be comfortable, you may not be willing to go through all the nuances and the details of these conversations, but start it. Give the patient permission to start it.

Another important take-home in the article is that it takes a village. These are not conversations that occur at one time, by one provider alone. It’s actually a shared responsibility across the specialties, but across the health care profession: nurses, social workers, chaplains. There are so many people who are part of a valuable conversation. Bring them in. Use your resources. They look to us as physicians to be sort of the start of that process, to give them permission to open up, but you can start it and then pass it along among your peers. So developing a really strong team to support you is key, and what we’ve been doing here at CareMount is developing sort of an outpatient team to help manage this, so it doesn’t feel like it’s one individual’s responsibility alone.

And documenting it. The more you document it, the more everybody knows. So that ER example I brought up earlier: Look, there may be documentation, but if there’s no documentation, forget it. First, you’ve got to find it, but second, you’ve got to write it. So those two things are critical.

Kevin Pho: We’re talking to Caroline DeFilippo. She is an internal medicine physician, and she wrote the KevinMD article “End-of-life conversations: Why physicians should embrace the responsibility.” Caroline, can you walk us through an example of how you would approach an end-of-life conversation, say in a primary care setting, say for the first time that a patient needs to discuss advance directives? What are some typical phrases that you use? I know that you gave an example earlier in terms of how to put a more positive slant on it, but what are some other phrases that you use to initiate that conversation?

Caroline DeFilippo: For me, I look at a couple of certain key types of visits where these conversations, in my opinion, flow naturally. Transitions of care is the biggest one. Patients just came out of a hospitalization or a rehab stay. Clearly, something happened, whatever the “it” may be. Short of acute appendicitis, most of these other chronic hospitalization reasons should warrant a discussion about what’s going on, what happened, and why they’re doing well or not doing well relative to the hospitalization events. So I take that as an opportunity. I look at them and say, “You OK? Tell me about what happened. Use your own words. How does that make you feel?”

Now, those sound like very open-ended conversations, and with the wrong patient, you can sit there and say, “Oh my gosh, 15 minutes later, I haven’t even gotten to my first question in the visit.” You can ask these questions in a guided way, and know your audience, who you’re asking them to. For some patients, you start with that open-ended question. For other patients, you ask a very tailored question, to say, “I’m worried about what happened in the hospital with regard to this portion of your disease. What do you think?” Saying “I’m worried,” acknowledging your concerns, is actually really important, and once again, it starts that process in the patient, saying, “Well, my doc’s worried. If she’s worried, maybe I should be worried,” right? So that opens the door.

The second key tip is asking permission. So you say, “I’m worried. Is it OK if we talk about this a little bit more? Because I’d like to understand how you’re feeling about this, but I want to make sure you’re comfortable with this today. Is that all right?” It’s very interesting, because you’ll get some people absolutely open, opening you into the conversation. Other people say, “No, I don’t want to talk about it, but you know what, I’ll let you talk to my sister,” or, “Let’s do another conversation another time.”

And the third part of it that to me is really important is being direct, but not overmedicalizing the information you share with patients. So often we go into the nuances of test results, scans, growth trajectories, all this stuff. Keep it simple: “I’m worried you’re not doing well. I’m worried this is as strong as you’ll be, and that in the future, you may become weaker and need more help at home. Can we talk about that? I’m worried time is limited, and I want to make sure I have plans in place to best support your needs, whatever those may be. Can we talk more about what’s important?” And those pauses, I just did it there. Pausing, letting a patient have an emotional reaction, really key. So those are some sort of quick tips on how to get started.

Kevin Pho: Wonderful. And my final question: What’s your take-home message that you want to leave with the KevinMD audience?

Caroline DeFilippo: Please start talking to patients about this. They are eager, and they’re looking to us for permission to talk about their wishes. It’s different than how we are initially trained, which is go through the facts, go through the history, the assessment, the plan. Talk to them as people. They are all people. This is not just a disease we’re treating. This is a human being who happens to have a disease.

And by having these advance care planning conversations, and by having them early, you will see your patients in an incredibly different light. I am confident you will provide better care for them, but more importantly, we as a society will do a better job in owning up to this, what we owe to our patients, which is to give them an appropriate death that best meets their needs, whatever those may be. And so I think the time is right. COVID’s shone a light on the importance of doing these conversations, having them early, but also showing that it’s all of our responsibility. And so, as physicians, my take-home message is to start. Start, build a team, get the resources you need, but start. This is an imperative for all of us.

Kevin Pho: Well, thank you so much for sharing your time and insight, and thanks again for being on the show.

Caroline DeFilippo: Thank you.

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