Who Should Palliative Care See? Diane Meier, Bob Arnold, and Justin Sanders

Eric 00:13

Welcome to the GeriPal Podcast. This is Eric Widera.

Alex 00:17

This is Alex Smith.

Eric 00:18

Alex, I’m a little intimidated by the guests on our podcast today.

Alex 00:23

What a lineup. We are delighted to welcome back 3 returning guests today. First, we have Justin Sanders, who’s a palliative care doc and researcher. And Director of Palliative Care at McGill University in Quebec. Justin, welcome back to the GeriPal Podcast.

Justin 00:37

Thank you so much for having me.

Alex 00:39

And we’re so thrilled to welcome back Diane Meier, who’s a palliative care doc and geriatrician, founder of the Center to Advance Palliative Care, or CAPC, and is now Director Emerita of CAPC. And Diane practices at Mount Sinai in New York City. Diane, welcome back to GeriPal.

Diane 00:58

It’s great to be here.

Alex 01:00

And we’re delighted to welcome Bob Arnold, who is a palliative care doctor and co-founder of VitalTalk. And Bob is also at Mount Sinai in New York. Welcome back to GeriPal, Bob.

Bob 01:11

Thanks. It’s great to be here.

Eric 01:13

So our listeners may be wondering why include 3 eminent leaders in palliative care in one podcast. And that’s because we’re going to be tackling one of the big questions in palliative care. Which patients should see a palliative care specialist?

Alex 01:28

Mm-hmm.

Eric 01:28

We’ve had a lot of podcasts on specific disease type palliative care, liver disease palliative care, renal disease palliative care. We’ve done podcasts on palliative care and opioid use disorder, palliative care in survivorship model. People who don’t even have anymore a life-limiting condition or advanced illness or serious illness. And the question is, Is there any risk for, you know, diffusing palliative care to all of these different patient populations versus risks keeping ourselves too narrow? And that’s what we’re going to be talking about today. But before we tackle that heavy, heavy subject, Diane, I think you have a song request for Alex.

Diane 02:08

I do have a song request and it’s Stand By Me by Tracy Chapman, one of my favorite all-time singer-songwriters.

Eric 02:18

And why for this podcast?

Diane 02:19

Yeah, I think when you hear the song, you’ll know why, but it opens, uh, when the night is dark and the moon is the only light I see, I won’t be afraid just as long as you stand by me.

Alex 02:31

Yeah. Beautiful song.

Diane 02:33

It’s not subtle.

Speaker 6 02:35

Not subtle. Not subtle.

Alex 02:37

Yeah. First written by Benny King based on a traditional song and then recorded by a number of artists. including John Lennon and Tracy Chapman more recently. She performed it at one of David Letterman’s last shows, and I think I saw her perform it a few times in the ’90s. Just a beautiful rendition. I will give it my own spin here. And for those of you who are listening to the audio only, my younger son, Wren, recorded upright bass, snap, a finger snap, and the triangle. Backing parts to this song, so enjoy.

Alex 03:28

(singing)

Eric 05:03

That was wonderful. Great song selection. Yeah.

Diane 05:06

Thank you, Alex. That was lovely.

Alex 05:08

Thank you, Diane.

Eric 05:09

All right. You know, before we tackle the big subject of who do we think should be seeing palliative care specialists now, maybe we can go down kind of history lane a little bit and just think about what we’ve seen in our time as palliative care specialists. Has there been any evolution of who we have seen over time. And then I’m going to start off with you, you know, thinking back to when you actually helped create this field to now, like what, what have you seen as far as the evolution?

Diane 05:45

Well, to my unending and great satisfaction, palliative care is not only about brink of death care. And that is a huge shift that occurred in the last 20 years. When we started out, um, we were viewed as synonymous with hospice, just without the payment, um, just without the resources that help patients and families at home. And I would come onto a floor on Mount Sinai Hospital and I would hear people whispering, here comes Dr. Death. Um, didn’t make me feel very welcome.

Eric 06:20

Mm-hmm.

Diane 06:21

And over time, and it took a generation, took over 20 years. including exposure of succeeding generations of medical students and residents.

Alex 06:31

Yeah.

Diane 06:32

To understand that palliative care teams can help patients with challenges, whether physical or existential or emotional, at any stage of illness, and increasingly call on us for help when their patients are struggling. Um, and that’s a huge positive. The downside, which is the reason for this podcast, is that we’re overwhelmed. With referrals of people who may live a decade or longer, as well as people who are nearing the end of life and going through what that involves.

And as a consequence, the field is looking for ways to limit eligibility for specialty palliative care consultation. And sadly, many of the younger generation think adding prognosis as a criterion would be helpful. And that causes me a great deal of distress. And I think it’s really shortsighted. So, um, and it’s going to take us right back to where we were, where we get called only when somebody is chain Stokes respirations.

Eric 07:43

That, thank you for that evolution. We will get to some of these questions around prognosis, but maybe we can hear from the others. Bob, how about from you? What’s that evolution looked like for you?

Bob 07:55

So when I got in palliative care through HIV, because I was an HIV doctor, when we started our consult service, it was basically me and one other person, and we saw everybody. We intentionally saw patients with chronic pain because the health system sucked and no one else would do it. And if they called us, We would see them. I think the difference has been, because I don’t mind seeing them, I’m a general internist at heart, and so it all felt okay to me.

I think as we became a field with people who came from a fellowship that was a 1-year fellowship that had a very specific training about very specific groups of patients, I think they were quite dysphoric. Because I was willing to see everybody and we were training our other people who asked for consults to ask them to see patients that weren’t the patients they were trained on, that didn’t have the skills that they needed to do a good job. And so as a group, we had to limit who we would see so that we told a consistent story.

Eric 09:09

Yeah.

Bob 09:09

I think that the downside is that the health system hasn’t stood up and done the job that it needs to do to take care of patients who fall through the cracks. I would argue that we should help the health system do what medicine should do, as opposed to having specialty palliative care take care of everyone, particularly given we have a 1-year fellowship training. We just can’t train people in the skills that they need.

Speaker 6 09:40

Hmm.

Alex 09:41

Okay.

Eric 09:42

Big opening argument so far. Yeah. Justin, how about from your standpoint?

Justin 09:46

Well, so I’m, you know, I’m a little bit earlier in my career and really had the opportunity to benefit from—

Bob 09:52

Oh, really? You have to pull the youth card, right?

Justin 09:57

Well, what I was going to say was that I’ve had the opportunity to benefit from all the work that Diane and Bob did to really lay the groundwork in the field. And where I trained in New York, uh, there was a lot of palliative care happening as I was a family medicine resident in, um, in New York City. And, you know, was benefiting from a lot of the, um, work that Diane had done locally. Um, and palliative care was very integrated into the setting in which I practiced.

And then later on working at a cancer center in Boston, you know, most of the work I was doing was with patients with cancer, although I saw the expansion at that time to, um, to specialist-aligned palliative care services and the growth of those. In those hospitals. When I came to Canada, I was very much contending with this brink of death care perception among both patients and clinicians. So we haven’t fully dispensed with that in either in the US or in Canada or elsewhere.

Bob 10:53

Hmm.

Justin 10:54

But I was, I was sort of constantly pushing to open the doors and what I’ve really struggled with, as I know many of my colleagues have across North America and elsewhere, is really running into the limits of that. So I have nephrologists and pulmonologists and cardiologists asking me for specialist palliative care. And I have said yes. And I’m really struggling to provide it because we haven’t actually, we’re really struggling to build our workforce in a way, even in the home, you know, in the historic home of palliative care at McGill, to really be able to provide the services that we want to be able to provide.

And so for me, I think when I think about the question of who should see palliative care, you know, the benefit of all the work we’ve done to train and develop different types of palliative care specialists in spiritual care and pharmacy, in nursing, is that the question is more like which palliative care specialist should they see, right? And when, not, not if. And so I think that’s the, that’s how I would sort of reframe the question now.

Eric 11:53

That’s fascinating. Another great point we can talk about. And I think all 3 of these just remind me of like, The evolution of our field, those definitions are not concrete. They don’t just stay what they are. And even from our service here in San Francisco, where me and Alex work, is I remember starting in this field and our time from consult to death stayed so stagnant at 21 days. I just remember that number, 21 days, 21 days, 21 days.

Bob 12:25

Didn’t matter.

Eric 12:26

how much teaching education we did. You know what changed it is that we opened up a palliative care clinic. So we just started seeing different patients and now it’s like a year and a half to 2 years time from consult to death for our entire service. Like, it just reminds me of how the field has changed, how we evolved, how new things like creating outpatient clinics, which are not new anymore.

Alex 12:48

Mm-hmm.

Eric 12:49

Changed also our definition of who we see. And also to Bob’s point, We also then have to train our trainees, like our palliative care trainees, how to do outpatient palliative care too. So given the evolution of definitions, maybe I can turn to the CAPC definition, Diane, right? So the CAPC definition is for people living with a serious illness. And like you said before, it’s needs-based. It’s not prognosis-based. Any age, any stage of a serious illness. I think one of the things I get caught up with is, okay, then what’s a serious illness?

Bob 13:24

Yeah.

Alex 13:24

What’s a serious illness? Amy Kelly has done some work on this, as you all know, and we’ll have to have Amy Kelly on the podcast actually, Eric. Yeah. ‘Cause I think we’ll have an opportunity to do that coming up. In her most cited article about trying to define the denominator of what is serious illness, Amy Kelly writes, conceptually, serious illness in quotes is a health condition that carries a high risk of mortality. So there’s that prognosis piece, and either negatively impacts a person’s daily function or quality of life, or excessively strains their caregivers.

Eric 14:02

How do y’all feel about that?

Diane 14:04

It’s a very inclusive definition and it is a patient and family-centered definition as opposed to a, we don’t, we don’t have enough people to do this definition. So it starts in the right place. So that, that I would say the challenge is not defining the population at risk or the population in need. They’re all around us. The challenge is how do we meet those needs? And we cannot meet those needs solely through specialist-level palliative care because there just will never be enough of us.

Bob 14:36

Well, let me—

Diane 14:37

It’s on us to figure out how to identify and meet those needs. in much more rational resource application than trying to apply specialist palliative care to every person. And we haven’t done enough of that as a field.

Justin 14:54

So one thing that, that makes me think about, Diane, that I’m struggling with myself here is we know that healthcare needs to change for the next 20 years because we have this oncoming tsunami of 80-year-olds. And with them is going to come a huge burden of serious illness. And including illnesses that we still don’t know in palliative care what to do with, like dementia, I think. And I have said the same things about, we will never have enough palliative care specialists.

And I also wonder what it would look like if we had a whole-of-government approach to transforming healthcare to meet the needs of our older adults and those with serious illness, because maybe we might, if we had a sense that if we worked in a sensible system or sensible systems, maybe we could think. That maybe we shouldn’t train so many of one kind of specialist and really lean into training a whole cohort, an enormous cohort of specialists that can help us meet those needs. I don’t know how that gets done, but it’s something that I’m actively thinking about here in Canada, how we work with the government to say we need to train more palliative care specialists, even if they’re not all doctors.

Eric 16:03

I love having all 3 of you on because you get this huge big sky approach in thinking about it.

Bob 16:09

But like, well, so I want to go ahead, Bob. I wanted to say, first of all, I agree with Amy’s definition. And the first part is a high risk of mortality, right? Isn’t that the—

Eric 16:22

Yeah, that was a prognosis part.

Bob 16:24

So I agree with that. I think often what happens for palliative care services We get asked to see patients. I mean, the question is how you define high, but we get asked to see patients who everyone agrees are likely to live 10 to 15 years. So they don’t have a high risk of mortality. They clearly meet her other criteria. And the question is, should specialty palliative care own patients who don’t have a high risk? That’s very different from the point that Justin and Diane made, which is the healthcare system should definitely own those patients.

Alex 17:08

Yeah.

Bob 17:09

And I think that if a specialty palliative care service says to patients, you’re not sick enough to be part of, you know, you don’t meet the first criteria, that doesn’t mean that we shouldn’t feed to our healthcare administrators every patient that we don’t see who they need to build systems so that they can be seen.

Diane 17:33

Okay. Let’s accept that they’re not going to, Bob, because they don’t see a financial incentive to do it. And until they, until they’re paid through value-based payment, they will not have a financial incentive to do it. So let’s assume that’s not going to happen very soon. And let’s assume that we, as experts in the field of how to make life worth living, when you also have a serious illness, have a responsibility to help build out a system that can recognize and respond to those patients without calling specialty palliative care?

Bob 18:11

So I think it would be great for us to do that. On the other hand, if our administrators aren’t going to fund it or build it, I think we’re then rolling a rock up a hill. Because people will say, well, you should do it, and yet they don’t meet the criteria of serious illness that we’ve all agreed is the best criteria. Do I think it’s a humongous problem? I think it’s a problem because those patients are suffering greatly.

There are phenotypes of who those patients are, that they’re not just suffering from physical illnesses, they often have serious psychological illnesses. They often have addiction definitions or addiction-lite definitions. They often have extraordinarily complicated social determinants of health.

Alex 19:06

Yeah.

Bob 19:06

And the question is, we can say we should help others build it, but in our current health system, others have no interest in building it. ‘Cause it’s complicated and loses them monies. I don’t have a solution for this. I just think that if we try to be the savior for everyone, one is, we’re not trained, and two is it will keep us from what I think our core mission is. I think we all agree that the system should do something for those patients.

Eric 19:43

What do you think our core mission is, Bob? How would you define it?

Bob 19:47

Our core mission is to take care of patients with serious illness, meeting that definition, and their caregivers.

Diane 19:55

So just let me ask you, what prognosis will you allow high risk of death to include? Because really, if someone might live 10 years, but they have terrible functional impairment and really bad quality of life and all kinds of risks from treatment, Are they excluded?

Diane 20:15

I mean, I’m really, I’m asking you, where do you draw the line?

Bob 20:18

I think reasonable people can disagree where you draw the line. And yet, for example, a lady who saw with Ehlers-Danlos syndrome, who has horrible pain all over, who has long COVID. who’s 28, clearly doesn’t meet the definition of serious illness via Amy’s criteria. It doesn’t mean that she’s not suffering. I agree she’s suffering. I just think if we really want to use the term serious illness, it can’t be that the patient thinks they have a serious illness.

Alex 21:03

Hmm. Justin. Jump in here. What do you think?

Justin 21:05

Well, I’ve just run into this problem a lot because when I came to this institution where I am now, I was, I was really sort of preaching the gospel of early palliative care to as many people as we could, could take. And then I got all, started getting all these calls from people saying, hey, will you see this patient? And, you know, by, I think by the second part of the serious illness definition, they clear so many people qualify, right? And so, and by the first part, it’s a little bit less clear.

And, you know, one example we have here, which I think more and more American physicians will face, is with medical aid in dying, whereas people with chronic pain have access to medical aid in dying, which, you know, has a high risk of death. By, you know, it’s given by choice, but they’re suffering a lot and their caregivers are suffering. And they said to me, well, you know, you said this is the definition of serious illness. Can you see this patient? And my colleagues, you know, I was at risk of driving my colleagues crazy because by expanding the definition, they’re already feeling stretched.

And then when someone calls them, I think what would have been really helpful. So I really agree with the definition. I also feel, as has been indicated, it’s not that there is a lot of room for subjectivity. And that leaves us in a bind because we can’t both We can’t do both with a limited workforce. We can’t say this is what we’re going to do. Now, the hospices in where I am, um, you know, not unlike in the US where they say sort of 6 months, a lot of them say 3 months. That’s our, that’s our cutoff for the hospices.

Alex 22:36

Yeah.

Justin 22:37

Which is not a fit. It’s a place. So they say 3 months and 3 months or less, you know, and sometimes there are people who we can’t say, someone might say between 3 and 6 months and they need, they need care. So we kind of say, okay, well, we think they’re at less than 3 months. We do make these choices. We make these cutoffs. And I agree. Like, I don’t know.

I don’t know how we, uh, you know, the surprise question, do we think this patient might be, might die within the next 12 months? That seems to have some utility in my mind as identifying these patients who are at high risk of death. But I don’t know if the next phase is to get more specific about what we mean about these more subjective ideas that are in this definition.

Alex 23:15

Yeah.

Eric 23:16

I guess one question that just makes me think, the ones that we struggle with most Are people with like multimorbidity and chronic pain, people with multimorbidity and opioid use disorder. And there’s this like, should they go to addiction medicine? Should they go to palliative care? I do wonder. I just think about where we are as a field. We are not addiction medicine specialists. We’re not honestly, I think chronic pain specialists. Our team isn’t even set up for chronic pain.

We don’t have a chronic pain psychologist, which I think is mandatory for Chronic pain, working closely with physical therapists. Like, how do we think about these areas of colliding, maybe not colliding fields, where our Venn diagrams with addiction medicine and with chronic pain kind of overlap? And who do we take and who do we don’t?

Justin 24:05

Just chronic pain is a really interesting example. I have a, I’ve had a lot of experience now with these requests to see patients who are thinking about dying because of their chronic pain. Or, you know, choosing medical aid in dying. Uh, my experience has been that they go into chronic pain clinics, and I know this is not true everywhere, and they just feel pulled apart in some way. They feel like they see the doctor, they see the psychologist, and they’re sort of stretched into their body and their mind and seen separately for those things.

And what I feel is different about what we do is it’s much more holistic and trying, I’ve always loved the idea that in palliative care, we’re trying to put people back together in some way. And so I do think that there’s, there are ways in which we have overlap with certain groups of patients, but we do things very differently. in a way that I think is much appreciated by patients. Um, and yet we can’t, we sometimes we just have to say we’re not, we’re not going to be able to see them. And even though we know that they’re suffering as a result.

Alex 24:55

And part of this is a result of the specific policies in Canada around eligibility for medical aid in dying. Is that right? Where they come to palliative care clinicians for—

Justin 25:05

Well, they weren’t before, but they, but they became a question when I was saying we should see people who have a serious illness and they’re saying, well, these people have a serious illness.

Eric 25:13

By their choice.

Bob 25:14

So, you know, Eric, I think that part of the problem here is the way we have in the healthcare system both sold palliative care to clinicians who do it and the training that you get.

Eric 25:30

Yeah.

Bob 25:31

If it was a 3 or 4-year training program, like cardiology, like oncology or cardiology, Or like in the UK where it is a longer training program. Where then people could get trained in PM&R, right? And really trained in psychological treatments for chronic pain and suffering. I would feel more comfortable with an expansion of the Venn diagram because I would say people are trained for this. They can do a good job Hmm. I think in a system where you get 1 year of training and the sort of general view, and I agree with Diane, it shouldn’t be just dying, quote, dying patients. It should be people who have a serious risk of mortality.

You know, I don’t know, 1 year, 2 years, 3 years. You can make a number. Reasonable people can disagree. I think programs can flex based on their capacity on the number. But there’s some number, I think, to then take people, train them for a year in that group of patients, they’re not going to be comfortable. We’re not going to do a good job. And those patients will overwhelm the general number of patients that we see.

Alex 26:54

So, Bob, you mentioned this idea that training is too short to meet this need. Do you think training should be longer?

Bob 27:04

So I’ve thought training should be longer from the very beginning. I think historically we got 1 year because there was a pragmatic decision about what they thought the federal government and the ABIM and, uh, the American Board of Family Medicine would go for.

Diane 27:24

Well, it was also, there was precedent for geriatrics.

Bob 27:27

Yeah, with, right, with geriatrics. I think it was—

Diane 27:30

And for us.

Bob 27:31

It was a mistake.

Diane 27:32

Yeah.

Bob 27:33

I think one year of training where people are beginning to look for a job 3 months into their training, even for the serious illness patients, they don’t have enough PM&R or psychology or psychiatry or caregiving support.

Eric 27:51

So let me ask you this. I could imagine though, so we are still struggling with the amount of palliative care trained physicians and other providers. I can imagine that number that goes into fellowship will decrease if you increase it to 2 years or 3 years.

Alex 28:05

Yeah. Yeah. You may end up with fewer trainees.

Eric 28:07

Which means you have fewer people to do a broader scope now, because now we’re getting them trained on how to do BMNR and addiction medicine and chronic pain.

Bob 28:16

Mm-hmm.

Eric 28:17

Like, right?

Diane 28:17

So, we could do tiered fellowships like we’re doing now at Sinai. People can do a year of geri and a year of palliative medicine. They can do HEMO/ONC and a year of palliative medicine, we could create second and third year training that is much more comprehensive. And what we’ve seen, and it’s anecdotal, is that once people get into the training, they want more.

Eric 28:40

Yeah.

Diane 28:41

They actually choose to stay for more training because they realize how much they need to learn. But I guess my view on this is I would ask us to focus on where we ought to be in 10 years. Instead of where we are today, Thursday, because the field developed because we focused on where we need to be in 10 years. How do we scale? How do we grow? How, what argument do we make? And I would argue that at some point, hopefully in my lifetime, we are going to abandon fee-for-service. We are going to be forced to work on a global capitated budget, population-level care. That at that point, what we do will be invaluable to every aspect of the system, and we will get paid for doing it.

And there will be money that will enable things. I don’t know if you guys have had Rami Sedhom on the podcast. She wrote this great paper called Precision Palliative Care as a Pragmatic Solution for Care Delivery. And basically her argument is we need to routinely, comprehensively assess people independent of prognosis for their needs. And it should occur through patient-reported outcomes. People answer questions on their phones, should go into the EHR. It should spit out what the patient’s predominant needs are and make a direct referral to getting those needs met. So it wouldn’t even have to involve the oncologist just thinking of it, right? It would just happen.

Eric 30:17

So is this more of palliative care as population health?

Diane 30:20

It is palliative care as population health. It involves screening and identification of risk and then targeting those patients with the appropriate resources. This might be specialty palliative care, but might not be.

Eric 30:33

This does remind me though, like thinking about 10 years from now, because I think we’re actually seeing it now. Alex and I got an upfront seat to it here, hearing some about these community palliative care programs, these startups that are doing palliative care where the palliative care specialist is actually not seeing patients. They’re at the top of the hierarchy.

Diane 30:53

Right.

Eric 30:54

Managing RNs, you know, untrained people who are calling patients about advanced care planning. And the palliative care provider is overseeing probably thousands of patients, but really not knowing Much about that.

Diane 31:10

Well, if there were any quality standards that had teeth, I would feel comfortable about that. Unfortunately, there aren’t. The only standard is, do you save the insurer money?

Eric 31:19

Yeah.

Diane 31:19

Um, and for, for that to become much more widespread, it would have to be accompanied by accountability and measurement of quality and mortality and all those things. But I think those are feasible solutions. And I think as a field, we should be advocating for that really hard, um, with disease-specific organizations, with state-level Medicaid programs, with the Hill in DC. We have to have a vision that we want government to work towards. We have to articulate it and make the case and advocate for it.

Eric 31:58

And then your blue sky 10-year thing. The population that a palliative care specialist, which going back to the main question, is seeing is what again?

Diane 32:08

It’s much smaller. It’s the people whose needs cannot be met by a well-trained social worker, a well-trained chaplain, a well-trained nurse who has symptom management training, is backed up by a physician on the phone. Most patients’ needs can be met that way. We’re just not organized to do it.

Bob 32:28

So, you know, at the beginning, Diane said that I was unrealistic, unpractical to assume that hospitals would build programs to take care of patients who didn’t have serious illness who were suffering. I wasn’t talking about them doing it now. I think Diane’s view of the pie in the sky is a great one. I think that Then what we’re really doing is palliative care will have transformed medicine, and the medicine will have embedded within it at its core, a focus on function and patient-reported symptoms. I think that would be great.

It doesn’t answer the question for what a specialist in palliative care should do between now and then. And one could argue that us helping the system take the sort of excess worries away by taking care of all these different patients on an individual level works against the change that Diane wants to see in the world, and that I think would be great to see in 10 years.

Justin 33:45

So I think one question that we’re sort of talking around is like, what does a palliative care specialist do? And, you know, I related to Bob’s question about, or Bob’s perspective on, you know, how long we need to train people. I mean, I’m both a physician and a man, so probably overestimate my own ability for both of those reasons. But, you know, I had a year of fellowship training. I had some additional, you know, research training and did a lot of work in communication skills training and things like that. But like, The people that I worked with, who I trained with and who trained for a year came out of that fellowship as really great physicians.

They probably went into it as good physicians, but they came out really good physicians. And I think if we think about like, you know, learning is a sort of knowledge, attitude, and skills, what we’re talking about when we add time for more, maybe more PM&R, more, you know, addiction medicine, whatever it is, more psychology. We’re talking about additional skills, but I think a huge part of what we do is about the attitude that we bring to this work. And I think that when you look at the what’s in the syringe studies, They show that a huge part of what we do is help people prepare and cope for the future. And I don’t know how much more additional addiction medicine training I would need to help do that.

Certainly, if I’m being asked to see more people that have more complexity and are likely to live longer and that have a lot of the social complexity that Bob described, that certainly leads our colleagues to ask for help from us because of the level of suffering that is there. Yes, it might be helpful to have some of those additional skills, but I think we really have to think about what is it that a palliative care specialist brings? Now that we have a broader sort of bouquet of palliative care specialists, you know, I completely agree with Diane that, that, um, I love this idea of precision palliative care and it’s been written about in different forms. Like there was that great JCO article from a few years ago that talked about this.

Like maybe, maybe the person with serious illness, maybe their biggest source of distress is spiritual distress. Like, and them coming to me, like, I’d like to believe that I can help them in some way by being connected, by, by by building a relationship with them in ways that build connection and that have a spiritual impact. But like the spiritual care person can do that. Now, the risk is, is that part of the benefit I derive from my work, part of the meaning I derive from my work is building these relationships with people over time.

And so when we, when we think about how we atomize our own work to be met by different people with different specialties, we’re in some ways undermining some of the thing that brings people to this work in the first place, which is meeting people where they are in a time of serious illness, building relationships with them as their social world sort of fall apart and helping them, you know, realize, you know, experience this sort of integrity and wholeness that Balfour Mount talked about as healing. Like, how do we, these are some of the things we have to reconcile, I think, when we’re, when we’re thinking about this.

Diane 36:30

But it takes all kinds, Justin. I mean, there’s some of us who really want to focus on system change and scaling and Reaching need at a much higher level than we’re doing now. And there are others of us who gain our satisfaction from one-to-one interaction with patients. And, you know, it takes all kinds and we need all of those skills in our field. I do think the audience would benefit from looking at the research on patient-reported outcomes. There’s a recent paper by Ethan Bosch. Um, that basically shows consistent in study after study improvement in quality of life, improvement in physical function, reduced utilization, all the things that matter both to patients and families and to payers, right?

So there’s good data on it. It just hasn’t been implemented. And then there’s the paper that I just mentioned by, that was in JCO by Rami Seddon that is a vision for what we should be building. And then the third thing that’s happening is that CAHPS has begun a standard setting process for community-based palliative care that will enable us to get paid by Medicaid, by other insurers, by private insurers, by value-based organizations like ACOs, because they’re not going to pay for something they don’t know what it is and what we’re providing, and the NCP is way too ambitious. So it’s something much more concise and practical. The goal is for that to become the criterion for getting payment.

Eric 38:11

And just for our listeners, NCP, the, so the, the 8 domains of palliative care with a full interprofessional team.

Alex 38:19

The National Consensus Project, NCP.

Diane 38:23

For quality palliative care. Yeah.

Bob 38:25

I also want to point out that while I think that patient-reported outcomes are a fabulous thing, most of the data regarding them, my understanding, is in oncology.

Diane 38:38

Yep.

Bob 38:38

And it is unclear that the kinds of patients that Justin is getting called on, or patients with chronic pain and the patients that Eric described, That you can just transfer it wholeheartedly. It will require changes, and my guess is much more help with social determinants of health and psychological inputs. And we have to study what its impact will be, and it would require a much different and robust health system.

Diane 39:15

Yeah.

Bob 39:16

I just want to point out that we are so far from there. I can’t get medicine residents To do, to just ask about functional status. Yeah. For seriously ill patients.

Eric 39:29

Well, it was also fascinating because we’ve had podcasts on, does palliative care work in renal disease? But palliative care, not just in cancer, but now we’re like GI cancers versus liquid cancers versus lung cancer. So there’s this, from a research perspective, we keep It almost feels like we are trying to figure out which area, which field, which patient population do we actually add most help with? But I’m also hearing that we should be helping everyone. Like, where does this all fall into?

Alex 40:00

Yeah, maybe we can talk about some specific edge cases and I’d love it if you have some edge cases that you’d like to discuss. I’ll mention a few. You can feel free to comment on any, all of these, or have your own. Survivorship. Right. So these are patients who have had cancer and have now… the cancer has been cured and they may have lingering effects of the chemotherapy, the treatments themselves, or the medications that were used to treat some of the symptoms.

We had a podcast with Laura Petrillo and Laura Shoemaker about this that got a lot of buzz and attention. You know, should palliative care be in the survivorship business? I’ll give you another one, and that is sickle cell disease. You know, sickle cell disease causes tremendous symptoms, enormous amount of pain. There are now some treatments that are potentially curative, right, for sickle cell disease. We had a podcast with Craig Blinderman, Stephanie Kaiser, and Eberechi Nwagouanyang about this.

Eric 40:59

Let’s start off with the first one, survivorship. Where do you fall? Where do you all fall? And does palliative care, is that our population?

Alex 41:06

No, I see everyone’s shaking their head no.

Eric 41:08

No, no, no, no, no.

Bob 41:10

Wait a second.

Eric 41:10

Wait a second.

Bob 41:11

First, I think we’ll do a bad job because we are inclined to use drugs that have side effects and we’ve, we transfer their use from one population to another, not knowing that the risks and benefits are different. It doesn’t mean that we shouldn’t help a group of clinicians from what we’ve learned in taking care of seriously ill patients. to develop survivorship clinics? The answer is we should clearly do that, and we shouldn’t own them. Because I will tell you that if you run a supportive oncology program and you take, you take on survivorship, you will be full of survivorship for 3 or 4 very long-lasting cancers, and you will never get to see the patients for whom we have, I think, particular expertise.

Alex 42:01

Justin?

Justin 42:02

I agree with that completely.

Alex 42:03

Diane?

Diane 42:07

Yeah. Agree.

Alex 42:07

Agree. All right. How about sickle cell palliative care and sickle cell? Or do you feel like you want to learn more before you— yeah.

Justin 42:15

Well, I, uh, I mean, I really appreciate, appreciated Eberucci’s really amazing commentary in the New England Journal about this. Um, I remember training as a family resident, family medicine resident in the Bronx. And we would, we always had 2 or 3 patients with sickle cell disease on our floor. And they would come in and they would use hundreds, they would go from 0 to hundreds of milligrams of morphine equivalent a day. And then they would stay for a week or 2, and then they would go home on next to nothing.

And in the meantime, before they got to us, they would experience so much judgment and so much stigma around their use of opioids. And I think where palliative care has value is that we don’t necessarily have traffic in that stigma. And so, um, and so I think that there’s, you know, in some ways it’s great that we can be involved in their care. I remember when I almost, uh, went to work for Bob many years ago, he, we talked about the possibility of starting up a sickle cell clinic with palliative care.

And so I would think that if we have, if you have the resources to do that, that’s great. Um, if not, I don’t have the resources for that. And yet, like with the survivorship, I would love to work with the hematologists who are treating these people to to understand what best practices from our field can help them best take care of those patients.

Bob 43:34

It kills my liberal heart because these are patients who are often disvalued by the health system.

Diane 43:43

Often.

Bob 43:44

And have complex issues. And so that makes me say, oh yeah, we should do it. And yet I would say that all sickle cell patients, I would say no. That can they have serious illness because of the complications of sickle cell? Then I would say yes.

Diane 44:02

Yeah.

Bob 44:03

I just think that our job should be to catalyze a group of hematologists who can do the work. We shouldn’t do it. And in fact, I would argue by us doing it for them, we so easily let them off the hook. from having to do it. It’s a mistake, I think.

Alex 44:25

Diane, anything you’d add before we move to the next one?

Diane 44:28

I mean, the, the, the hematology associations have put out guidance and best practices on management of sickle cell pain crisis. So if you’re a hematologist and you’re not following those guidelines, you’re not practicing appropriately. And I think that’s just what we want. We want each field to step up and take responsibility. for the misery in their disease group. And hematology at Mount Sinai, at least, has done that.

Alex 44:58

Let’s move to a more geriatrics, palliative care overlap kind of question. How about a person with mild cognitive impairment who has trouble managing finances and multiple other chronic conditions like diabetes, some mild COPD, some mild heart failure, hypertension, arthritis?

Eric 45:18

How about that?

Justin 45:18

This is going to be like 60% of the population in about a decade.

Alex 45:22

Yeah. Yeah. Right. They’re 90 years old.

Eric 45:25

It is the population that these community palliative care programs are targeting.

Alex 45:28

Yeah. How about that? Diane, we’ll start with you. Geriatrician, palliative care doc.

Diane 45:32

Well, certainly they should see a primary care geriatrician if such people existed. Um, but yes, I mean, that’s the person trained for that constellation of complexity. And uncertainty and increasing functional impairment and cognitive impairment. Palliative care teams are really not appropriately structured for that. Um, although we do see patients who have that plus cancer, plus end-stage heart failure, end-stage renal disease, et cetera, um, where the geriatric skills are really critical. to delivering good quality palliative care?

Again, once we have value-based payment, when that’s real, there will be all the evidence-based programs that are out there will be deployed because they are successful at keeping people out of the hospital. And so it’s a lot of this is driven by the payment system and recognizing that and fighting for a more rational one. Should be part of our professional responsibility.

Alex 46:43

Bob or Justin, anything you’d want to add there about the boundaries of geriatric palliative care?

Bob 46:47

I would say as a primary care doctor and trained in a primary care residency, I would say you shouldn’t be an internal medicine doctor if you can’t take care of these patients and you don’t have systems built in your clinic to take care of these patients, because these are a high percentage of the patients you’re going to be seeing. And if we’re relying on geriatrics, which is, if you look at the most recent matches, is not growing and never will have the volume. Again, geriatricians need to be a catalyst in the same way, but this is a primary care internal medicine problem.

Justin 47:29

I agree with that. I think the much harder case, and we still don’t know what to do with patients with advanced dementia in palliative care. And I think this is a huge issue for us. I think there are some people who are advocating for us to be involved in the patients with advanced dementia who have a, you know, a life, who have an illness from which they could die at some point, who have suffering, who have caregivers that suffer. I don’t think we have a skillset that helps us know as palliative care physicians what it is that we can do for patients with dementia.

And this is going to be a huge share of the burden of serious illness. in the next 2 decades. So I think we have to learn. We started a whole lecture series for our McGill, uh, Palliative Care National Grand Rounds series to put in a plug, um, to, to discuss this. And we had Sean Morrison come, uh, speak with us about this recently, gave a great lecture if people want to see. But I don’t think we know what we’re doing. I don’t think we know what we’re doing with what will be one of the most prevalent serious illnesses in the next 20 years.

Diane 48:28

And, and with a very high risk of mortality, I might add.

Bob 48:32

Yeah. Yeah.

Eric 48:33

That, that, that patient Alex just described fits the bill for a serious illness, like high risk of mortality.

Alex 48:38

Oh, no. 90, mild cognitive impairment, hypertension, arthritis.

Justin 48:41

Did you say heart failure?

Alex 48:43

Mild heart failure. Mild COPD. Yeah. Mild.

Bob 48:47

Yeah.

Alex 48:48

Yeah.

Justin 48:48

Just normal, basically.

Alex 48:50

Right. Your average 90-year-old.

Bob 48:53

Yeah. Yeah.

Eric 48:54

Well, I think we’ve actually answered the question fully and it’s clear as mud. Who should see a valve care specialist?

Speaker 6 49:01

And it’s okay.

Alex 49:01

Reasonable people were Agree. Some people believe that prognosis should not be a part of the definition of serious illness.

Justin 49:08

I’m actually surprised that there was some agreement.

Bob 49:11

Yeah.

Alex 49:11

I think there’s a strong argument to be made there too that didn’t come out as much today, but I think, you know, if we’d ask Ken Kavinsky, he would probably argue that position. So a lot more to be discussed and thought about here. Yeah.

Bob 49:24

And I just want to point out where we all agreed. We all agreed that the health system needs to not depend on specialty palliative care to solve all its problems, that specialty palliative care doctors have an obligation to serve as catalysts to help other clinicians take care of these patients who are suffering and their caregivers are suffering. Diane would argue that we have a requirement to work in the political sphere as public health. catalysts. I think that’s a reasonable position. And that as programs build over time, they may change in their views. ‘Cause some of it is you’re going to see some of these patients, not because I would argue they’re specialty palliative care patients, but politically they help you build your program.

Eric 50:15

Yeah.

Bob 50:15

And we didn’t talk about that at all.

Eric 50:17

And I just want to say one other thing that I think was really amazing. Like, this is truly a problem of our own creation, right?

Alex 50:23

Yeah.

Eric 50:23

We started off with death squads, you know, seeing people at the very end of life. Actually, I was just called that last week. That’s why the squad came in. And now we’re being asked to see people who have decades left to live.

Alex 50:38

Sometimes. Yeah.

Eric 50:39

So truly, in some ways, a good problem to have as we think about the future of our field. I think we just need to stand by each other.

Bob 50:47

There you go.

Eric 50:48

As we figure this one out, Alex.

Alex 51:06

(singing)

Eric 52:41

Diane, Bob, Justin, thanks for being on this podcast with us.

Justin 52:44

Thank you so much for having us.

Diane 52:45

Thanks for having us.

Eric 52:47

I love the podcast where we just do really hard, yeah, hard questions, subjects and questions.

Alex 52:52

Yeah.

Eric 52:52

And thank you to all of our listeners for your continued support.

This episode is not CME eligible.

For more info on the CME credit, go to https://geripal.org/cme/