How physicians can prepare for end of-life conversations with patients

Drew Boxler
Drew Boxler

Editor of Physicians Practice

,
Caroline DeFilippo, MD, MPH, FACP

Associate Medical Director and Internist, CareMount Medical 

This week on Perspectives, Dr. Caroline DeFilippo, MD, MPH, FACP of CareMount Medical in New York, explains how physicians can grow more comfortable with these conversations and when they should consider having them with their patients.

Physicians Practice®: One of the most important conversations that a provider can have with a patient regards end-of-life plans. As you'll hear from today's guest, Dr. Caroline DeFilippo, most providers—most people in general—are reasonably not prepared for these conversations.

To begin to have more effective end-of-life conversations, it will help to have a better understanding of how these conversations differ form those you routinely have with patients.

Dr. Caroline DeFilippo: So I think the big differences with end of life conversations are that they're not necessarily a conversation where the physician is in the driver's seat in terms of prescribing or sharing information about a patient's illness, as much as it's actually the opposite. In that the physician is asking guiding questions, and trying to understand how the patient feels learning about his or her wishes. But really, we're doing more of the listening than the talking. And that's a big shift for us, physicians and providers who are used to a very fast paced and sort of having a certain amount of control and rhythm to how those visits go. And that's one of the many things that makes these conversations hard to do and a natural barrier for us to wanting to start them.

Physicians Practice®: Though most may be unfamiliar or even uncomfortable with such conversations, Dr. DeFilippo says these conversations are some of her most rewarding.

DeFilippo: I think what's really different, unlike the traditional medicine, we're talking about in terms of us prescribing how to manage an illness or treat hypertension, or a broken bone, for example, is that we're learning from the patients. And it's some of the most challenging circumstances you could ever be faced with in terms of the patients are scared, they're vulnerable, they're nearing the end of their lives. And here you are serving as a guide, and a partner with them. And if I think about why most people I know who are in medicine chose to go into medicine, it was to be there to help patients. And this is one of the most tangible ways in which you can feel that you're helping a patient, it's the most satisfying, raw exposure of emotions. And I would argue in many ways, so obviously, we're doing this for the patient's benefit, but it also is for the providers benefit. It, you know, renews our faith and why we do our jobs, it restores sort of that heart of medicine and the art, both the heart and art of medicine, which many times can feel a little bit lost in the day to day grind, that we're often practicing with it.

Physician's Practice®: So now that you know how these conversations differ, what exactly does end-of-life planning look like?

Here's what Dr. DeFilippo had to say...

DeFilippo: End-of-life planning can take on many, many different definitions. And I think that's one of the key things I want to bring up today. It's not just about shelling out a health care proxy, it's not about completing a Do Not Resuscitate order. I think a bit more broadly, it's about planning for what's ahead. And it may include many different things. It's an umbrella of options. So it's first introducing the concept to the patient and meeting them where they are, and then navigating with them over the course of ideally, many conversations over many years with them the various needs that they will have. And so it may just be saying, you know, as you're getting older, you're a very high functioning older individual. But we know at some point, you may not be able to meet your care needs, living independently as you aren't, for example, 95 years old, let's talk about what that might look like what options we have in place for you. Or God forbid, you did have a fall on you needed to be in a hospital for a period of time, how would we manage that? So sometimes it's this very hypothetical, 'what if' conversation, and other times it's incredibly grounded with we know you have a diagnosis, and we know there's a timeframe of progression. And we know these are issues that are going to arise such as frequent rehospitalizations. For a patient with advanced lung disease, let's talk about what would be the reason she would feel comfortable going to the hospital. And when there might be situations where you'd say, I no longer wish to go to the hospital. But unless we really present the patient with very specific scenarios, I think it's hard for most people to bring that up on their own. That's not a natural proclivity, we have to say, let's talk about my mortality and talk about how that might look and feel no, people aren't raising their hand begging to talk about it. So we as the physicians owe it to the patients to say, we've seen this enough times to know how this might go. And I want to have a plan. In case it goes this way. And I want to have a plan in case it goes the other way.

Physicians Practice®: The best time to starting engaging with end-of-life conversations with patients, Dr. DeFilippo says is early! Early, early, early...

DeFilippo: Early, early, early. I can't say that enough. I was just reading an article where someone was actually sort of lamenting this move towards primary palliative care and saying, "Are we supposed to start talking to people at birth about their end of life plan?" No. Okay. So when I say early, I don't mean that early. But what I mean is the earlier the better. So we've got 90 million Americans living with some sort of chronic serious illness. Every one of those 90 million Americans should be having some conversation about what might be coming. So even if it's that they have diabetes, that's been difficult to control. We know that leads to complications and some of those complications can really shorten their lifespan. That's the time to just start talking about that. And what are your thoughts? How do you feel? What are your supports? Do you have any documents in place? Do you want to learn about them? You don't want to start these conversations after the crisis has occurred. And unfortunately, that's the way we tend to structure this in our healthcare system. We wait till they're in the hospital, we wait till the critical event has occurred. And suddenly someone, oftentimes the patient, says, "This is not what I want, how did I get here? How did we go from treatment to treatment to treatment, and I don't want this for my life." And I will tell you, it's a very hard ball, if you will, if you're thinking about this as a momentum with a rolling ball, it's a hardball to stop. So once you've kind of committed to a certain treatment course, it can be very difficult to back off and say, "Actually, that's not really what I want at this time." It almost takes more work to stop it, once it started. So I would argue the earlier you start at least introducing the idea gently probing inquiring making it a safe space to talk about these concepts, the better you and your patients are served. So as events occur, you can put them into the right context based on what the patient has shared with you.

Physicians Practice®: Up next, Dr. DeFilippo shares some personal examples of end-of-life conversations and planning she has engaged in with a couple of her patients.

DeFilippo: Absolutely, yeah. So pre COVID, we had actually started an initiative at CareMount, where I work in trying to get patients to chat more about their end of life wishes long before a crisis had occurred. And through our trainings, we had a series of guided questionnaires, we would take our patients through just understanding what their wishes and their goals are.

One patient comes to mind who was an older gentleman who had multiple medical problems, but nothing urgent or pressing. But he had clearly expressed that should he become ill he did not want any advanced medical therapies applied to them, it was really important to him that he died in peace with his family without machines and interventions. The COVID pandemic arrived a couple of weeks later, in our area in New York, and unfortunately, this patient became ill with COVID. And he found himself in the hospital, in a situation where mechanical ventilation was being offered to him. And both he and his wife were able to draw on this conversation that had occurred in an outpatient setting during a calm, non crisis moment to say this is not consistent with his wishes. And it was difficult for the family members who were not present during that conversation to understand how he came to that conclusion, why it was reached. And their feeling was, of course, we'll do more and we want to, you know, give him as much as we can. But it was because they had that conversation that they can draw on this and had clarity to say, No, the easy thing sometimes is to do more and to keep escalating care. And it often is harder to stop and just maintain care or de-escalate, even if that's so clearly what the patient wanted. So you know, that conversation really resonated with our care team to say, you got to talk before the crisis arrives. And it sometimes makes it much easier to manage the crisis.

The second example that comes to mind is actually shows the other side of it. And this was another older gentleman, this gentleman in his late 90s, who was living independently until he had a hip fracture. And he wound up in a rehab facility with a variety of complications that occurred and basically wasn't doing well. And the family was torn with quesitons like "What do we do? Do we push them back to do more? Do we give him a transfusion? Do we treat his infection?" And ultimately, with a lot of challenging discussions, they wound up bringing the patient home, very happy, who died peacefully a couple of days later.

In hindsight, the family realized the patient had always been trying to tell them that he didn't want to do anymore. But he didn't feel he had the voice. He didn't want to let them down. He didn't want to disappoint them by saying I'm ready. And if only they could have had those conversations in that non emergent situation, they might have been able to avoid some of those challenging moments that occurred in those last few weeks of his life. And so I think, you know, both of these highlight sort of expected outcomes, things that you say you knew this was going to be hard on the patient hard on the family. But the difference of having had a conversation up front, and having shared it with multiple family members, really changes the trajectory of end of life care for people in a very dramatic way.

Physicians Practice®: If you're looking to gain more preparatory experience with end-of-life conversations, Dr. DeFilippo shares where to look for resources.

DeFilippo: Yeah, so there are a bunch of resources that are available to support physicians. The first thing I'm going to say though, is this is a skill. Like any other skill we were trained in, in medical school and residency, we need to look at this as a tool we can practice we can get better at. So for some people, this is a tool that's very easy and natural, and they don't need that much help with it; but for others, it can be quite challenging. And so I think the key here is for all of us, regardless of our natural proclivity to seek more engagement, think of it as a CME opportunity. It may be that you go to a variety of websites of which the Center for Advancement of Palliative Care has a number of different resources online, there are many, many podcasts available out there. And you can look at this from a variety of different angles.

So you can think about this as how do I improve my communication skills? So how do I become more comfortable just with talking about this, you can look at this from what are the local documents and legal restrictions ramifications that are available in my region? So I should know what forms to complete and you're talking more to social workers or case managers to help you.

Or you could look at this from a symptom management perspective and say, I actually want to become more competent with managing end of life pain, or end of life comfort, and I want to make sure I have the skills to do that. Each one of those domains is a skill set in and of itself. And each one of those domains has many, many resources available.

So I think the first step here is just acknowledging what it is you want to learn more about, and then investing in those resources that are out there. Some of these are free, some of them are quite small amounts of fees. But what you will find is there's an abundance of information there. A lot of the palliative care providers that exist in the community are aware of the fact that they can only meet the needs of a certain small segment of our population. So I mentioned that 90 million patients, that's going to double in the next 25 years as our baby boomers age. So we know we're looking at 100 and 80 million patients who are going to have palliative needs over the next 25 years. There's no way we have enough providers to meet those needs. So we all need to develop more skills to be able to support them better.