Prognostication in Hospice and Palliative Care – A Podcast with Christian Sinclair

Eric: Welcome to the GeriPal Podcast. This is Eric Widera.

Alex: This is Alex Smith.

Eric: Alex, who is our guest today?

Alex: We have a hospice and palliative medicine visionary with us today joining us via Skype.

Eric: A visionary.

Alex: We have Christian Sinclair. Christian is a man who needs no introduction. He has many titles. Most recently, he was president of AAHPM. Christian, welcome to the GeriPal Podcast!

Christian: Ah, thanks for having me on, you guys. This is exciting. I’m glad to be here.

Eric: We start off every podcast with a request for a song. Do you have a request for Alex to sing?

Christian: I do. Casimir Pulaski Day by Sufjan Stevens. Not many people probably know this song, but it is very, very palliative in that it hits on topics of serious illness, spirituality … It’s just a great song, too.

Alex sings “Casimir Pulaski Day” by Sufjan Stevens.

Eric: So Christian, what was the title again and what’s the significance of this song?

Christian: Yeah, it’s Casimir Pulaski Day, which is a celebration in Chicago, maybe the whole state of Illinois. I’m not quite sure on that, but it is celebrating a Polish general who came and helped the United States in the Revolutionary War. But that doesn’t have so much to do with the song, except for Sufjan Stevens made a whole record about Illinois songs and that was one of them. It’s just a great song about how someone deals with illness of a friend. I find it so real in listening to the words of the song, and the end is so majestic. It’s sad but uplifting at the same time. It’s one I go back to a lot when I’m thinking about palliative care issues and maybe a tough day at work. I can listen to that and it helps me get to a better place about a day.

Alex: Yeah, it’s such beautiful lyrics. I love the specificity of this song. You can really imagine his relationship with his girlfriend and the trueness of it, the struggle with his spirituality. He says, “We went to Bible study, we put our hands all over your body and prayed but nothing happened.” Questioning. It’s just so real. It’s vivid.

Christian: Yes. It is.

Eric: At the end of this podcast, Alex, you can play a couple more verses.

Alex: At the end of the podcast. But the end will not be majestic and uplifting, I warn you. I don’t have a full choir to do that ending.

Christian: No big orchestra?

Eric: We can round up some of our team outside.

Christian: I would recommend, he did play this at Austin City Limits, and if you can find that online, it’s a pretty entertaining and a beautiful watch.

Eric: Well, we invited you on to talk a little bit something near and dear to Alex and my heart, which is prognostication.

Christian: Yes.

Eric: And thinking about prognostication, including how to think around hospice eligibility and other issues. Maybe before we dive into it, how did you first get interested in prognostication? Is it …

Christian: It’s been something that has lured me and vexed me and made me think about so many different things philosophically in life ever since I did my hospice and palliative medicine fellowship in Winston-Salem. Dick Stevenson, some of you may know, he was my fellowship director and he … I went to him one day. I was rounding at the inpatient hospice unit, and I just had a day where three or four family members in a row for different patients had come up to me and said, “How long is this going to be? How long do you think my loved one is going to live?” And, you know, this is a hospice house. We had pretty much … All of these were pretty open conversations about mortality and prognosis.

But I just found myself really struggling with: why did I get all these questions? How am I supposed to know? I’ve never really had the training. Yes, I’m interested in this and I’ve done some self-study of some research because I was interested in hospice and palliative medicine, but I really just struggled with the essence of the question. How are we supposed to know and why do people ask? He had a really great response when I said, “Why are they all asking me? I don’t know.” He said, “Why don’t you ask them why they’re asking you? Ask the families why they’re asking this question.”

It’s not something that I do routinely now, but as a learner, it helped me understand all the different reasons why people want to think about the future and what plans they need to make with their own lives, with their families, with their work lives, for their loved ones. So that question back to me, answering a question with a question, like, “Ask them why they want to know,” and it just got me thinking: how can we do better as clinicians? It’s always frustrated me whenever I hear anybody start to give a presentation about prognostication or any sort of end-of-life topic and they usually will say at some point, “Doctors are all horrible at prognosticating.”

That’s not necessarily true. It has this mysterious quality to it that I find very attractive, but I’m aspirational. I hope we can do better with it.

Alex: Let’s go back to the clinical … I love the starting with the clinical, because that’s so much of our audience, too, with the GeriPal podcast, as is your audience, too, I would assume, at Pallimed. Clinically, in your day-to-day practice, what sort of time frames are you talking about in terms of the patients that you’re seeing in your work?

Christian: I’m at the University of Kansas and I do primarily outpatients palliative care clinic in a cancer center, seeing patients with the BMT teams, patients with solid tumors, and when I do inpatient consults about 11 to 15 weeks out of the year, I am seeing patients from all different sorts of service lines: heart failure and neurology, trauma … So that can vary quite a bit, but the population that I’m most concentrated on right now has really been more of an outpatient upstream palliative care population that … I have patients that have an expected prognosis in the years range, and even some that are really in a survivorship mode with chronic graft versus host disease that prognosis isn’t really a big, huge question that we’re grappling with.

Alex: Yeah. Some of those folks in the out … It’s different from my clinical work, which is an inpatient consult service where prognosis is often more in the time frame of hours, days, months, years at the most. Some of these folks might live for years or decades these days, right? With cancer, some of the new treatments.

Christian: Yes. That’s where I think it is important for us to start to document pretty much in every note I write what I think the prognosis is. Even if I think it’s gonna be at least several years barring any major change in their health status, that helps inform how I’m gonna approach chronic opioids. If I think their prognosis is several years, I really need to take a different look at pain control options for them and have different conversations.

So for me, prognosis is probably more primary in my clinical decision-making than goals of care because understanding what the prognosis is helps actually drive the goals of care, which actually helps drive the plans. I know it’s pretty popular these days in palliative care to talk about goals of care drive the plan, but prognosis really, for me, comes before that.

Eric: When you walk into a patient’s room and you’re thinking about prognostication, which you can split up and tell … like, if I go to a fortune teller, there’s the foreseeing, so she’s gonna see what’s in my future and she’s gonna then foretell, tell me what’s in my future. How do you think about doing that? Let’s start with the foreseeing. How do you think about that part of prognostication?

Christian: For me, it starts way before I’m actually crossing that threshold into the room. When I’m doing my pre-charting, pre-consultative work, I’m starting to pull up different studies and I have smart phrases for lots of different diseases now. Basically, any time I encounter a new disease, I try and build a prognostics smart phrase that helps send me to different links and to different research studies. So I’m trying to really go in pretty informed.

In addition to doing my own background work and looking at the literature and the SEER database if I’m looking at cancer, is making sure I’m talking to the primary team, whoever consulted me, and getting an idea of what they think the prognosis is because if they differ greatly from what I think the prognosis is, then we need to have our own medical family meeting to figure out: are we on the same page or do we see things differently? What’s been amazing is, once I start documenting that, it drives a lot of conversations, too, when clinicians differ on what they think the prognosis is.

Eric: You mentioned the SEER database. Do you use any other tools to help you think about, let’s say, cancer prognosis or other types of … I’d say heart failure, or … Any other tools?

Christian: I struggle with some of the tools that are out there. I find that they don’t always apply to the population I have. I think your guys’ work with ePrognosis is a great example that there’s so many different options out there, you really need to make sure: does this reflect the patient I’m taking care of? I have not used tools like PiPs or the PAP score, those sort of thing. And even just straight up the palliative performance status as an indicator of prognosis. I use those as sort of rough guidelines, maybe, but I never in my documentation say because of those tools, I’m definitely saying this is the likely prognosis. I really always couch it in terms of, “This is my professional estimation.”

Alex: It sounds like the main thing that you rely on, then, is looking at the clinical studies. Are those primarily clinical trials, I would guess, for people-

Christian: Yeah.

Alex: Right? Something like that?

Christian: Yeah. Especially in cancer care, there’s new clinical trials that are coming out all the time that … I’ve learned to not be afraid to email the oncologists to say, “I have no clue what study you’re looking at that indicates that this therapy is indicated for this cancer. Can you point me to that?” I get to learn about it. I get to show the oncologists that I’m actually interested in what they’re doing and how they’re doing it, but then I get to see some of the survival curves and actually get to look at the patient population who this was tested in and say, “Does this really apply to the patient that I’m seeing, or do they have a different set of comorbidities that I need to factor into their prognosis?”

Alex: It seems like every day, there’s a new drug or treatment that ends in -mab or -ib.

Christian: Yes. Oh, absolutely.

Alex: And costs a bucket-load of money.

Christian: Yes.

Alex: Which hopefully, the insurance will pay for. I worry, though, that some of those patients for those studies are carefully selected by the drug companies to show improvement.

Christian: Right.

Alex: How do you factor in … because you mentioned before that key piece … so important, is: do the patients in this study reflect the patient in front of me?

Eric: And generally, functional status is actually really good in individuals who are enrolled in these trials versus some of the patients that we see, and definitely did not include any hospitalized patients the majority of times.

Christian: Right, right. I think that’s where having a good relationship with the clinicians you’re working with to say, “Hey, this is a study, but this patient’s ECOG functional status of three and these are my concerns. I’m really worried if they’re gonna have the same results as this patient or as the study.” That conversation allows the oncologist and I to get maybe to a better compromise for what we think a shared prognostic viewpoint of that patient is. There’s been plenty of times where an oncologist sheds light on something that I wasn’t necessarily aware of and I’m like, “Okay, I can see that a little bit differently now,” and it’s not just anecdotal … you know, “I had a patient who walked in and has lived 18 years because of this medicine” type stuff. It’s pulling on studies.

I really have come to appreciate how much oncologists really know the data that’s out there in their field. On one hand, it’s an appreciation for the people I get to work with, but on the other hand, it helps actually reinforce for me the need for palliative care. I want the oncologists being really focused on those studies and knowing that data about what weird new medicine helps what unique new cancer, and palliative care can play that role to handle quality of life issues.

Eric: How do you also think about, let’s say, other diseases that also may affect someone’s prognosis? Let’s say you have somebody with a stage two lung cancer but also has New York heart classification for heart failure with advanced COPD and a bad BODE score and … How do you incorporate all that information?

Christian: I try and figure out … I go back to the functional status as really the vital sign that matters to me, and really help that drive, and not just the functional status what it is now, but also that change over time. I think that’s a really key piece and there’s been some research out of Japan that has shown that change over time in functional status has been really helpful as a prognostic indicator, so … And then I make sure I document that in my notes.

There’s a great study by Eric Roland looking at palliative care consultations and how often they use evidence-based prognostication, and it was surprisingly low. I was really impressed that they published a single-site study, so basically looking at themselves and say, “Hey, we’re not really good at doing evidence-based prognosis.”

It’s probably pretty good for most palliative care teams to say, “I think this patient’s prognosis is in the weeks to months range.” That may feel very daring, almost, sometimes to write in the chart, but for us to actually write, “I think it’s in the weeks to months range because I’ve looked at their BODE score and I’ve looked at their NYHA classification, and per this study, it makes me think that their prognosis is this,” that takes a lot more effort, but I think it helps show our professional respect for prognostication and this isn’t just fortune-telling, this isn’t just a good clinical gut sense, but that we actually have a good knowledge and background to share this information as part of our clinical expertise.

Alex: It’s interesting. And yet, there is something to that eyeball test, isn’t there?

Christian: Absolutely.

Alex: There is something like, you know, you read about the patient, you put them into some index, you look at the studies, you say, “Okay, I think that this patient’s prognosis is X,” and then you go see them. You say, “Whoa.”

Eric: That just happened to me the other day. We got a consult regarding hospice eligibility on someone. I took a look at his chart. I thought, “Oh my God, this guy is … Why are they asking about hospice eligibility here?” Then when we actually walked into the room, my very first inclination was: “Oh my God, this man has days to live.” He died, like, the next morning, and that did not come out in the chart or …

Alex: So the chart suggested that he had longer than six months.

Eric: The chart looks like this guy had years.

Alex: Years.

Eric: But there was something to just that eyeball Gestalt test that just told you no. And it wasn’t in the labs. It wasn’t in the diagnoses. He had multiple diagnoses, but-

Christian: Was it in the exam saying his skin was warm, dry, and intact? That would’ve been helpful.

Eric: It was the A&O x 3 that was … It was actually just walk into the room and you realize, “Oh. I would not be surprised if this guy died in the next week.”

Alex: Yeah.

Christian: Right, and I think that’s where I would love to see our field study what is behind that, to really start to pick apart what that is, because I think a lot of it is functional status in that eyeball assessment. But it is … that first look is tremendous in prognostication.

Alex: You mentioned earlier that if somebody had a longer prognosis, you might rethink the way that you prescribed opioids for them. This is such a hot topic. We’re doing a podcast with Jessie Merlin at Pittsburgh about chronic pain and opioid prescribing and palliative care. But if you could … Are there any hard and fast rules or guidelines? Because this is so topical important to people listening.

Christian: Yeah. First, a shout-out to Jessie Merlin. She’s great. She was a really surprising go-getter at AHPM back when she was a resident. So if there’s any residents or med students listening to this and thinking about going to a conference or thinking about a career in this field, definitely go into something like the annual assembly for hospice and palliative medicine like Jessie did, is a great way to show you can make a difference in this field. We’re still pretty young and young leaders are coming from everywhere, so just want to put a plug-in for Jessie real quick.

Sorry, go back to that question.

Alex: Oh yeah, so back to the question about … You mentioned that you rethink the way that you’re gonna prescribe opioids for somebody who has a longer term prognosis. Do you have any hard and fast rules? We heard one of our fellows say maybe at one year they would really rethink things. If the prognosis is less than a year, then not so worried about the addiction issue, but … in longer-

Christian: Yeah. In our clinic, we have started doing opioid and addiction risk screening for … We’re trying to get to 100% and it’s harder than you think if you’ve never tried it. But we’re trying to do that screening and really individualize it for patients that are higher risk but maybe an even shorter prognosis, and really what they care about. We may be a lot more cognizant about opioid prescribing in them.

I don’t really have hard and fast rules about certain … once a certain prognosis is triggered that I am much more cautious. But it helps me to have that conversation. When I write down on my plan the prognosis is expected to be at least a year to several years, and then my next plan is what I’m doing about their pain, to tie those two things together to say, “Gosh, is this someone who I would expect to be on opioids at a high dose or a low dose a year from now? And what are we doing to help make sure that that isn’t really their only leg of the stool for their pain control?”

So it really prompts me and the clinicians that are part of our outpatient team to say, “Let’s have that conversation with the patient,” and say, “Do we expect that they’re going to be on opioids long term, and if so, what does that mean for their life?” I think prompting that conversation is really important and then individualizing the care from there.

Eric: All right. Equally challenging issue that many of us face on a near daily basis: hospice eligibility. Prognosis less than six months … I know you were a medical director and a head honcho of a large national hospice organization.

Christian: Yes.

Eric: Thoughts on hospice eligibility? How should we be thinking about it? Things that we should be doing differently or the same?

Christian: Oh dear, have we missed a wonderful opportunity to have a population-based study on prognostication. All we expect medical hospice directors to say, “Yes, I certify six months or less,” but what … I don’t know how to change this despite my visionary status, but to get us to say, “Hey, let’s actually write down some estimates of what we think that patient’s prognosis is.” I think we, in the 35 years of Medicare hospice benefit, we’ve missed a great opportunity to collect a lot of data points about more exact prognostication and figure out when we’re wrong, why we’re wrong or when we’re right, why we’re right.

That being said, since I can’t change what Medicare hospice is gonna do about being more accurate about prognostication, I think it’s important to look at the studies. In 1999, Fox did a study looking at the guidelines at the time, which are really essentially unchanged, and they used the support study data and they basically showed that the hospice guideline criteria for CHF lung disease and liver disease are not that accurate. In fact, when they applied them even pretty strictly, 50% of the patients were still alive two years out.

So we’ve kinda sat with the same criteria for a long time and not challenged ourselves. Now, I hope that doesn’t make any hospice people listening to this really afraid, like, “Oh, gosh, we’re getting beat up already.” That’s not what I want to make people think about at all, but I think we can do better.

Eric: Why do you think that is? I don’t know any other guide … Those guidelines were created, what, in late ’80s?

Christian: They were updated in the mid ’90s.

Eric: Mid ’90s.

Christian: By NHPCO.

Eric: Two decades ago they were last updated. I don’t know any other guideline that was last updated two decades ago that is currently used on a daily basis.

Christian: Right. Right, and is important for the care of so many different people at a critical time in their lives that-

Eric: But why is that? Why is there stagnation with these guidelines?

Christian: I’m not sure. NHPCO is the organization that originally created the guidelines, and with any guidelines, you don’t want it to become law, but what it has become with Medicare is, if you don’t meet those guidelines, we can claw back money and you-

Eric: Because technically, they’re guidelines, not criteria, right?

Christian: Right.

Eric: Nobody calls them criteria despite the fact that it should be a guide.

Christian: Exactly. I think part of the stagnation is probably due to … this is my own take. This is not anybody else’s take but Christian’s, but not wanting to poke the bear. Be careful. If you start messing with prognostic criteria, it could get worse and get more strict, and that means less people having access to the hospice benefit. And not necessarily is that good for hospice organizations in a business structure, but is that good for healthcare in general? I think that makes a lot of people really cautious.

Eric: Because that’s one of the methods that hospice directors have as far as giving leeway to prognosis, is loose guide points, right?

Christian: Right. Absolutely. Absolutely.

Eric: I guess the other way is a good narrative right? Can you describe what that is and what you do as a hospice medical director to certify someone?

Christian: Yes. When someone is brought onto hospice, the medical director has to review the medical records here from the nurse and the social worker and the team that has seen the patient. In many cases, the medical hospice director has not personally laid eyes or hands on the patient. They are taking a report, so they are trusting a lot of other evaluations of the patient and they have to compile all the evidence. They don’t get that walk-in-through-the-door first look at a patient to say, “Yep, I see why they’re eligible.” They have to really do it with that chart review, which can … not always tell the whole picture. That’s why I think the hospice nurse is really critical: because they’ve actually laid eyes on the patient and can really share unique details that aren’t always in the chart.

But really, it’s a good description of the underlying disease process, whatever it may be, and the functional status or limitations that are showing that pattern of decline over time. This really surprises most new hospice medical directors: you can’t write something … Let’s say someone comes on hospice, dies three days later before the hospice medical director ever gets a chance to write that certification that they’re terminally ill. You can’t just say, “Patient had colon cancer and died.” That’s actually not enough. Even though the patient clearly was eligible in the fact they died in three days, you have to still write a fairly detailed description of what were the processes and the medical findings that were present at admission that made that patient eligible.

Eric: One more question about hospice and eligibility. People who don’t have a single terminal condition, you have multi-morbidity, they’re doing poorly, they’re not meeting really strict guidelines, but they’re looking bad. As a palliative care clinician who is making a referral to hospice, what would be helpful from my side to actually have documented in the chart saying that this guy has less than six months to live or this-

Christian: Oh. Now that there’s no debility or failure to thrive category necessarily or guidelines that are okayed by the local coverage determinations of Medicare, I think something that all palliative care clinicians could do is make sure that when we’re referring someone to hospice that we’re teeing up the best clinical information in our estimate.

I can tell you as a hospice medical director, when I got a great note from a primary care physician or oncologist or a palliative care physician saying, “This is why I as an unaffiliated, independent, outside physician think they belong on hospice,” that was so helpful to me to say, “I can agree with this, obviously. All truthful stuff, but I can agree with this and I can put this in my note,” and I would be okay going to a Medicare audit to say, “I believe that this patient belongs on hospice,” and I could fight that, because I have an independent outside physician’s opinion.

So I think all palliative care physicians should do their hospice agencies that they refer to a great service and make sure they give a great clinical summary.

Eric: Just because they don’t meet guidelines doesn’t mean they’re not hospice eligible, are right?

Christian: Yeah, exactly. Exactly.

Alex: Would love to skip to talking about the other aspect of prognosis. We talked about the communication piece. We actually started there with asking the patient, “Why do you want to know? What does this mean to you?” I wonder if you have any other key phrases or questions or things you tell trainees to make sure you incorporate into the communication aspect of prognosis.

Christian: There’s a lot of great stuff written out there, but one of the things that I probably haven’t seen written about often is, once you get that permission to talk about prognosis and you share the prognosis and maybe even how you came to that finding, once that settles in and everyone’s had a chance to deal with that emotionally, I find asking the question of: “Did hearing that time frame surprise you?” It may sound a little bit cold or rote on this podcast, but I think in the clinical setting and with the right emotional valance and trust already built, that that question helps both patients and families recognize that they probably knew this themselves for a long time, but it may have been much harder to say it and address it out loud, and that they had probably been making plans or doing things recognizing that their prognosis was not that long, even though their words and some of their actions may have made it seem like, “Oh, we’re gonna live forever and nothing will ever make this disease worse. We’ll do great.”

So I find that question: “Did hearing any of that surprise you or upset you?” … and for the most part, like, 95% of patients say, “No, I think I knew that,” and they usually will share something after that that helps their family say, “I thought you didn’t know,” or the family says, “Well, we were trying to be strong for you,” and the patient says, “I was trying to be strong for you,” and all of a sudden you get a different connection that patients and families realize they were kind of hiding the truth from each other, even though they both knew it at the same time. So I find that that’s been an effective emotional touchstone for patients and families.

Eric: Any other tips or tricks that you have around prognostication?

Christian: I strongly believe in the permission-based aspect because oftentimes, you’ll have family say, “Oh …” They’ll be in the room with the patient and say, “How long do you think this will last, Doctor?” And I’ll make sure I turn to the patient and say, “Is that something you’ve been wondering about?” Same thing if the patient’s the one who asks that. I’ll kind of turn to the family because sometimes there’s a family member that’s like, “I’m not wanting to hear this at all.”

Now, I guess a new area for prognostication disclosure is the concept of open notes. I don’t … Do you guys have open notes?

Eric: We do.

Christian: If we’re good palliative care clinicians and we’re documenting evidence-based prognosis, we may be disclosing prognosis in a chart that someone’s reading on my chart, an epic or something like that, before we’ve even had a conversation.

For those who don’t know, open notes means your patients and families, if they have access to online patient portal, have the privilege and right to see the clinician’s notes unedited. I think that’s gonna be a new area for us to really think about, and I’ve had to start disclosing to patients.

Eric: Yeah?

Christian: To say, “Hey, that may be in my chart or there in my note.”

Eric: Yeah? Are you, big, bold letters, “Spoiler alert” written on your chart?

Christian: No. I should think about that. Yeah, spoiler alert.

Eric: Do not read before this line if you don’t want to hear a prognosis.

Christian: Do you want to hear how this is gonna end? No. There’s a big twist.

Eric: Well, Christian, thank you very much for talking with us.

Alex: Thank you so much, Christian.

Eric: Alex-

Christian: I love what you guys have done with the podcast. It’s fantastic, and I hear there are more podcasts to come from lots of different arenas, so everyone-

Eric: Ooh. The more folks doing podcasts, the better.

Christian: Yes.

Alex: The more, the merrier. We look forward to that. That’d be great.

Eric: Alex, you want to end us with a little bit of song?

Alex: Yeah, we’ll do a little bit more of this -minus the majestic ending.

Alex sings “Casimir Pulaski Day” by Sufjan Stevens.

transcript edited by: Sean Lang-Brown

by: Author’s First and Last Name goes at end of post