In this week’s podcast we talk with Kieran Quinn, author of a systematic review and meta-analysis of palliative care for non-cancer illness, published in JAMA. We also talk with Krista Harrison, first author of an accompanying editorial.
JAMA editors cut out some of my favorite parts of Krista’s editorial, possibly because they were more like a blog post than a JAMA editorial. (I was senior author; go figure how it ended up reading like a blog post!) So here is the submitted introduction, unedited:
“As with many people’s best ideas, inspiration struck in the shower. Dr. Balfour Mount, a urologic-cancer surgeon at the Royal Victoria Hospital in Quebec, Canada, needed a name to differentiate a new hospital-based service he created for people with serious life-threatening illness from Dr. Cicely Saunders’ English hospice programs. Dr. Mount coined the term “palliative care” to connote the core goals of the service: to improve quality of life and to mitigate sources of distress. The field of palliative care was born. The year was 1975. Forty-five years later, palliative care retains its central focus on improving quality of life for people living with serious, life-limiting illnesses and their families by addressing physical and psychological symptoms, social and spiritual needs, and aligning patient and family values with available care options.”
In our podcast, we talk about the surprising finding in Keiran’s study that palliative care for noncancer illness was associated with a modest improvement in symptoms, reduced hospitalization and emergency department use, increased advance care planning but not improved quality of life. How can palliative care, since inception designed to improve quality of life, not improve quality of life?
Listen to the podcast to find out!
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Eric: Welcome to the Geripal Podcast. This is Eric Widera.
Alex: This is Alex Smith.
Eric: And Alex. I’m excited for today, who do we have on?
Alex: Today we have two very special guests from Canada. We have Kieran Quinn, who is a general internist, Palliative Care Physician, Health Services Researcher in Toronto. Welcome to the Geripal Podcast, Kieran.
Kieran: Thanks, Alex and Eric, really, really excited to be here. It’s not snowing in Canada yet, but we’re not far away.
Alex: And we have Krista Harrison returning to the podcast, who is a Palliative Care Researcher at UCSF, and wrote an editorial on the topic that we’re going to discuss today. Welcome back, Krista.
Krista: Thank you. Glad to be here.
Alex: I think last time you’re on the podcast, you sang Krista.
Krista: Yeah, I was pretty excited that you didn’t ask me to do that again today. [laughter]
Kieran: Please don’t ask me to sing that. [laughter]
Alex: We used to have a guest do music all the time. But that’s when we’re in person — it doesn’t work so well via zoom.
Eric: So the topic for today is going to be really talking about the theme of palliative care and those with chronic non cancer illnesses. This came out of a recent publication in JAMA that Kieran did with an editorial from Alex and Krista that’s attached to that. We’ll be talking all about those things, but before we do, we always go into a song request. You have a song request for Alex, Kieran.
Kieran: Absolutely. One of my favorite musicians of all time and personal heroes who sadly just died on September 11th, Freddy Toots Hibbert, so he’s the lead singer of a Jamaican reggae and ska band known as Toots and the Maytals, credited as one of the founders and creators of the term reggae from his song Do The Reggae.
Kieran: And I think that the themes in this song ring true to some of the challenges that we’re seeing with COVID across the world now, he talks about some inequities that he had in his life growing up in Jamaica in it. And I think we’re seeing some of those inequities being uncovered in healthcare during the COVID pandemic, but also just a fantastic tune.
Alex: Yeah, it is.
Eric: That was excellent, Alex.
Kieran: Right on. Thanks, Alex.
Eric: So going to the topic at hand. Let’s talk about palliative care for non cancer patients. How did you get interested in this topic, Kieran.
Kieran: Honestly, Eric, the first profound experience I had that really got me on this path of thinking about patients, the care of patients with serious illness, and it’s particularly non cancer illness, was one of my first nights on call as a resident, which was really years ago now. And there were no, I did it as a resident on call, and he came in with a pneumonia, but he had quite advanced dementia where, his suffering was palpable, he couldn’t recognize his family, he couldn’t get out of bed, he needed full care.
Kieran: So as a due diligent, first year resident, I did my thing and chose the right evidence based antibiotics and gave him what I thought was just the right amount of fluids. But something just wasn’t sitting right all night. The next morning when my staff attending came in, and we were rounding on the patient’s post call, I said to him, this doesn’t seem like the kind of care that I would want, and there’s just something about it that seems like it’s not like the kind of care that most people would want projecting that on to them. There’s got to be a different way that we can look after these types of people instead of this sort of conveyor belt in and out of hospital.
Kieran: And he said to me, there’s a lot of challenges with the healthcare system. But if it’s something you believe in and you want to try to change, then research is one way to do that. And so I set myself on that path. And I see it every day in the clinical practice as a general internist and palliative care physician, and read about it from great work. I like those people here today and others in this world of Palliative Care Research.
Eric: And then kind of the big picture. So there’s this issue of kind of lumping and splitting in palliative care. You can call anything in palliative care. And you can look at all these different diseases and just see how they’re going. And then kind of splitting potentially into different types of cancers, kind of we’ve talked before on podcasts, is there a difference between palliative care for colon cancer versus non colon cancers?
Eric: And in this case, why split between cancer and non cancer diagnoses? As you look through some of your research, including a recent BMJ article, and this JAMA article that you just published a month ago?
Kieran: Yeah, that’s a great question, Eric. And I think it’s not a clear cut delineation, I think it’s still somewhat controversial, whether these types of illness trajectories, as we think of them, whether it be cancer or various non cancer type illnesses are distinct, or can be sort of, share common palliative care needs.
Kieran: The one thing I think it’s important to understand conceptually, though, is that their trajectory of dying does appear to be different. So patients with non cancer illness can have these very dramatic de compensations of their disease. And there’s several patients with heart failure, for example, who I see where they come in in really bad shape, and we tell them this looks like it’s going to be the end for you.
Kieran: And now they kind of laugh in our face and say, you’ve said that six times before Dr. Quinn, I’m going to do it the same this time that I did the other few times, right. But that kind of trajectory makes it difficult for us as healthcare providers, and also the patients and caregivers, to know when to shift their philosophy of care to more of a comfort focused approach than one that’s focusing on survival.
Kieran: And I think, to me, that’s the biggest delineation between patients who have cancer, where the signposts can be quite obvious. But once you’ve stopped responding to your chemotherapy, the writing’s on the wall, that now it’s time to focus on, cherishing the time you’re left. Whereas in these other diseases, it’s not always so clear. And I think that creates some of the challenges and differences in care that we see.
Alex: And Krista, as a Palliative Care Researcher, where do you put the need for a study like this, a systematic review and meta analysis of non cancer, serious illness and palliative care in context?
Krista: Well, on the one hand, as a researcher, I always like to see us improving the evidence base, trying to figure out what have we studied rigorously through randomized control trials, and where there is still gaps. My background is in health policy and ethics. And so that framework often leads me to think about who is actually receiving care now, and who’s benefiting, and then who’s left out. And so that’s sort of what I’ve seen over the years that we, as the field started in cancer, and we saw that that was a beneficial framework for people with cancer.
Krista: But we have expanded to other different care domains, but each time we have to re accustom both the colleagues that we have in those fields and the patients with those particular diseases, that this is an approach to care that would benefit them, and just talking about the end-of-life doesn’t necessarily make it come faster.
Alex: And we should also mention that, oh, boy, Dio.. somebody help me.
Krista: Dio Kavalieratos.
Alex: Thank you. [laughter]
Kieran: It took me a long time…sorry, Dio…to get your name right. He knows that from our many conversations. [laughter]
Alex: Dio, apologies if you’re listening. Krista got it. Yes. Kieran knows it, Dio wrote the systematic review of palliative care for cancer. And so this is in some sense, a terrific follow on study, Dio’s study was also in JAMA.
Kieran: Yeah. Now, it wasn’t intentional extension of Dio’s study, he actually included trials of patients with non cancer illness in his review as well, but at that time, there just wasn’t the same evidence base that we have now. And so we found there was an opportunity to fill that gap, as Krista was talking about.
Alex: So, tell us what you did in some way that our largely clinical audience is going to understand. Because you did a tremendous amount of work here, you sifted through zillion titles, etc. What was the core thing that you were trying to uncover here in your systematic review and meta analysis?
Kieran: Right? Well, I’ll say that it came at the expense of time with my wife and my kids as a testament of just how much work this kind of endeavor can be. But it was fun, in some respects. We looked at just over 13,000 titles that were published, and ultimately boiled that down to 28 trials that looked at palliative care as an intervention in patients with non cancer illness.
Kieran: And most of those patients ended up having heart failure, or they were trials of sort of mixed diseases. But there were a couple in patients with COPD, and dementia as well. None in other important non cancer illnesses. And then ultimately, what we did is to try to synthesize that evidence. So to sort of take a high level view at it and say, what is palliative care compared to usual care able to achieve for these patients?
Kieran: And specifically, we looked at really patient centered outcomes. So things that are important to keep patients feeling better, having lower symptoms, shortness of breath, pain, things like that. And having a better quality of life. And there’s tools that researchers use to measure that.
Kieran: We also looked at their health care use. So that would be the emergency department use and the health and the hospital use, hospitalization. Because those are connected to poor quality of life as well. It’s kind of a chicken and egg phenomenon. But patients don’t want to spend a lot of time if they don’t have to in hospital, especially as they put in the life.
Kieran: And then the last thing that we looked at as far as an outcome measure was, advanced care planning. So that was a big push to try to have people have these discussions and serious illness conversations to plan for the future, to identify important decision makers for them. Think about the types of care that they want. And we wanted to test all of that to see if palliative care could help improve those outcomes.
Eric: I kind of like to think of it sometimes when looking at these studies, like what if palliative care was a drug? Let’s say a class of drugs. And when I’m looking at these articles, are we looking at the class of drugs? Or are we looking at a specific drug? What was the route? What was the dose? What was the frequency of palliative care?
Eric: And I get really confused a lot because there’s so much heterogeneity in what we’re calling primary care, for example, is this within the class of palliative care? Is this specialty palliative care? Is it primary palliative care? Well, how often was it given? The frequency? What kind of dose didn’t include? All the domains of palliative care, or just a couple domains of palliative care? And with route, was an inpatient, or outpatient? How did you handle that for this? Because you must have hit that wall of heterogeneity and what we call in palliative care, right?
Kieran: Oh, absolutely, Eric, I think it’s probably one of the most important points when you’re trying to think about what to do with this information. And I thought Krista and Alex did a really nice job of trying to highlight that in the accompanying editorial, because where we like to think of things and boil them down to a simple intervention like drug A versus a sugar pill, palliative care is not a single entity, right? It’s a complex intervention. And there’s so many elements to it, both in the personnel that make up a team. But like you said, Eric, the timing, the dose, how often people are being seen, where they’re being seen, what they’re being seen for.
Kieran: And it’s really difficult in a simplistic kind of way. So we did our best to try to be able to synthesize that and talk about that in the study. And there’s some statistical wizardry around trying to measure that heterogeneity. But in the end, I think it’s just fundamentally important to recognize that that exists.
Kieran: And it’s a first step into the realm of asking that question is, does palliative care work or not in patients with non cancer illness? And the next step is, if it works, now what’s the secret sauce that people like to talk about? How are we going to implement this, scale it, make it sustainable, figure out all the components? And that’s what I’m excited to step into in the next several years of my life.
Krista: So, Kieran, I wanted to ask you, how did you actually decide how big of a net to cast with regards to what you were terming palliative care interventions?
Kieran: That’s also a great question, Krista. And in some of the feedback we’ve gotten already is that perhaps we were too broad reaching, in our definition of what palliative care was, and something that I think appropriately brought up as well in the editorial. The tension right now, I think in North America, at least around design of palliative care programs is a lot of this discussion around specialty versus generalist palliative care, right?
Kieran: And the concept there to me is, are we trying to raise the ceiling or raise the floor? Right? So do we want to raise the floor and get as many providers as possible in the healthcare system to practice palliative care or have some palliative care skills within their toolkit? Or do we need to raise the ceiling and train as many palliative care specialists as we possibly can in the shortest amount of time to meet the needs of our aging, medically complex population?
Kieran: And because we felt like we were sort of at the, well, we’re not at the beginning, because it’s been around for a long time. But answering this question, we’re sort of in the early stages of it, we wanted to be broad, and try to get some signals as to whether there were differences in specialty versus generalist palliative care. But again, it opens the door for those future studies to help sort out those details.
Eric: And you used the NTP definition or domains of palliative care. So like eight big domains of palliative care, and to be included in the study, is that right? You have to meet two of those eight domains.
Kieran: That’s right, two.
Eric: Which was very similar, I believe, to Dio’s study too as far as.
Kieran: Exactly the same, actually, we want it to be consistent, as I said, as an extension of Dio’s study and model it.
Eric: And I’m always, the same thing with Dio’s study is how easy was it when you were looking at whether or not to include studies to incorporate those NCP guidelines and domains? For those listeners who haven’t seen the domains, we’ll have a link to it, it’s a free PDF that you can actually download. And I think that the fascinating thing is you have these eight broad domains, but then it goes into very specifics afterwards about what they mean with assessment and treatment options and follow up.
Kieran: I mean, I think that it’s a really helpful structural framework to think about palliative care, right, going back to your point about, it’s a drug, trying to think about it like a drug. It’s such a complex intervention. And I think that those domains really help break it down for people so they can understand some of the components of what is palliative care, what’s it trying to address.
Kieran: But it’s challenging when you’re looking at studies, and trying to assign what domains at each of those interventions are touching on, right. And a lot of it would come down to uncertainty at my level. So it’s important to working as a team, we had a team of experts on the paper. And so we would review those with everybody, we had two reviewers, myself, and Mohammed. And then we had a group of other experts where we would say, we’re just not sure if we think this meets this domain or not, what do you guys think? And then we’d kind of have a consensus from experts. And I think that’s probably the best way to approach it.
Kieran: The other challenge is that the older studies don’t have to report their trials in the same way. Thankfully, there’s been some great efforts into standardizing how we report trials now. But prior to the early 90s, some of those are just interesting discussions that require a little bit of inference to try to figure that out.
Alex: So this, your study, you included manuscripts that were in inpatient setting like hospital setting, outpatient setting, home based, clinic based, nursing home based, am I missing any settings there?
Kieran: No, that’s all of them.
Alex: And some of them that made it in, like one that we called out in our editorial that you also called out in your discussion. Is this like the Van Spall article, which was also in JAMA, I’m just going to read aloud what the intervention was here so our listeners can decide for themselves whether they think this is palliative care.
Alex: Hospitals were randomized to receive the intervention in which nurse led self care education, a structured hospital discharge summary, a family physician follow up appointment less than one week after discharge, and for high risk patients, structured nurse home visits and heart function clinics were provided to patients for usual care, which transitional care was left to the discretion of clinicians. As you can tell from that description, this is the effect of a patient centered transitional care services on clinical outcomes in patients hospitalized for heart failure. So it very much made it into the transition domain. Is that palliative care? What do you think Kieran? What do think Krista?
Kieran: Alex, it’s amazing that that is literally the exact same question that when we updated our search and Van Spall popped up, I said to the team, is this palliative care? It kind of sounds like it. But I could also easily be convinced to say it’s not really what intuitively we think of as palliative care.
Kieran: And I think that that’s one of the biggest challenges that we have right now in the field, is because we’re fighting to have palliative care expanded, because we know it helps people. We’re now getting lost in this forest of will, what exactly is palliative care, then when we’re moving it upstream for people, is it based on a diagnosis? Is it based on a prognosis? Is it based on a set of number of needs?
Kieran: And I think that that’s one of the biggest things I’ve learned from this study. And you guys nicely highlighted as well in the editorial that, I think there’s a real need to standardize that moving forward, and we really need to nail down some definitions, both from a research standpoint, but probably more importantly, to help our patients and providers understand what it is that we’re asking for.
Eric: Yeah, it always reminds me of the Carson article, that palliative care led meetings for chronically critically ill patients in the ICU, which was this large, but very negative study with some potential harms from the intervention. And everybody says, oh, that’s not a palliative care intervention, because it didn’t address all these other domains. Versus some articles that came out that were positive about palliative care that also didn’t address many other domains and didn’t include a full team. We latched on to say, “Oh, yeah, look, palliative care works.”
Alex: Are you saying we’re cherry picking?
Alex: We’re only pointing out the negative studies is not palliative care.
Eric: That’s what I worry about with studies like this is if you’re not going to include that study, Alex, that you mentioned, then you’re starting to cherry pick. You’re saying oh, no, that one’s definitely not palliative care, but these are, but when it comes to just looking at the MCP domains, if it’s within that structure.
Alex: And Eric, I think that kind of points out to exactly why we felt compelled to include it, right, is at the beginning, before you set out on this ridiculous journey, you set your criteria to say these are the things we’re going to include. These are the studies, this is the criteria, and I couldn’t make a compelling argument to say that they didn’t fit those criteria.
Alex: And whether you like it or not, and there’ll be lots of disagreement about whether Van Spall’s study should have been included in this meta analysis or not. We felt compelled that we needed to, because there was no reason to exclude it. Otherwise, we would be left as cherry pickers.
Eric: Can we talk about did palliative care work?
Kieran: Right. So we’ve talked a lot, we haven’t actually talked about what we found. I would say, on the whole, yes, palliative care works. So in general, we showed that it modestly reduced symptoms. And you can argue about whether that was clinically important or not. But there was a signal that it was reducing symptom burden in these patients. It lowered the rates that these patients went to the emergency department, and when went to the hospital. And it improved the number of patients who were engaging in advanced care planning, which was critically important.
Kieran: We were most surprised, though, by the fact that it did not appear to improve quality of life. And I think that’s probably what’s going to generate some of the most important questions as to why is that?
Eric: And, Krista, you had a nice setup in your editorial about this. How did you feel about the quality of life finding in particular?
Krista: Well, I think this is where we went back to pointing to the heterogeneity issue, that if you’ve got a lot of different settings, a lot of different diseases, and for some of those diseases, we have fewer tools to budge symptoms. We’ve spent a lot of time and effort trying to figure out ways to mitigate pain. But it’s harder to mitigate fatigue, for example, that all of those, the heterogeneity will reduce the likelihood that you see quality of life, seeing a major difference.
Krista: And another thing that we saw in the Twitter conversation, after both the paper and the editorial came out, is a number of people were pointing out, but I would say they were calling for improvements in our quality care measurement tools, quality of life measurement tools, rather.
Eric: How so? What needs improvement in them?
Krista: Well, the argument we were seeing is that they are not particularly sensitive or well designed for the particular diseases and issues at stake. But, Kieran, you were the one who had to figure out a way to synthesize this. So you say a little more about it.
Kieran: No, I mean, I think there’s a few different hypotheses you can put out there as to why this may not be. And certainly, the heterogeneity, right, that signal to noise ratio is probably one of the most compelling and unlikely reasons that that could have occurred. But DO in his study, and in ours, we certainly thought a lot about the fact that these tools, especially in non cancer populations, aren’t necessarily designed to measure or aren’t sensitive enough to measure changes in quality of life.
Kieran: So for example, the Kansas City Cardiomyopathy questionnaire, which is commonly used in patients with heart failure to measure heart failure related quality of life. And, in Rogers’ PAL-HF study showed some improvements there. But it’s derived in a population of patients that was in the Medic-2 Trial. And that’s a device trial for primary and secondary prevention of sudden cardiac death to do arrhythmias.
Kieran: Is that a palliative population? Right, I don’t know. I mean, again, it comes back to how you define things. But if you’re looking at a tool that’s measuring, that’s created in a population of patients who are at different stages, or maybe have different values and goals for their life, and then you try to take that hammer and put it on a screw, you’re using the wrong tool.
Kieran: And so I don’t know if that was a good analogy or not. The point is, we might be using the wrong tools, and they’re just not going to measure a difference because the tools don’t measure difference, not because that difference doesn’t necessarily exist.
Alex: Although we should point out, if you took that Van Spall article that we picked out, and didn’t quality of life improve?
Kieran: Yeah, it did. Except that in like the 30th page of the supplement where we look at publication bias, it turns out that all the prior trials, like there’s a heavy publication bias towards positive trials in quality of life. And, journals like to publish positive findings, thankfully, I think that’s changing a bit more now. So I still don’t know, because there was a heavy skew towards positive publication bias.
Eric: I was trying to cherry pick Alex.
Alex: I’m a true believer. I drank the Kool-Aid. It works. It’s what I do every day. I think my take is similar to Krista’s. As I was just coming off service the last two weeks, thinking about the patients I care for, and I asked my fellows, where do you think we do a better job? Do you think we do a better job caring for people with cancer or the people with non cancer? And they unequivocally were like, “Yes, cancer.”
Alex: We just have been doing it for longer, we have a better sense of what it is, we have better… Can’t treatment of cancer pain, we have decades of research on treatment of cancer pain, right? Versus dyspnea and heart failure, shortness of breath, and COPD, fatigue. Those fields are in their infancy. We have a long way to go. And many of the needs of people with say, dementia are, certainly they have symptoms, but many of their needs are things like assistance with daily care. Things that are often more within the geriatrics domain, than they are within the palliative care domain.
Kieran: And Alex, that makes me think about kind of two points there. So when you’re talking about patients with dementia, particularly advanced dementia, and trying to measure symptoms or quality of life, it’s not the person with dementia necessarily that’s reporting those symptoms or quality of life, right? You have like a surrogate caregiver or a nurse or a physician who’s sort of ascribing those outcomes to them.
Kieran: And again, are those tools accurate? I mean, there are some validated tools, sure, but that’s a different application than the patient themselves talking to them. And your point about cancer, like a lot of palliative care programs are seated within huge Cancer Centers and they’re designed for cancer. And so are we trying to take an already amazingly complex intervention that works for patients with cancer, and just trying to fit it on to patients with non cancer? I don’t know if we need a redesign and a rethink, or we just need a modification. But I think that there’s a lot of work to be done to sort that out.
Eric: Yeah, again, going towards that lumping and splitting article, after doing the study and seeing the results, do we need randomized trials for every disease? Even for like this study, there’s a huge difference between… There’s probably a bigger difference between dementia and let’s say, stroke, then stroke and cancer, or maybe, dementia and heart failure, and then heart failure and cancer?
Eric: Do we need specific randomized control trials for each one of these diagnoses? To say, does this type of palliative care intervention work? Or is it much more important to have that bigger picture approach?
Kieran: Well, I think, the easiest answer is to always say it’s both. But I think you start at the top of the funnel, and we work our way down. This is not the first or last study of palliative care interventions in non cancer illness. There’s a ton more that needs to come. And I think we need to start to focus on understanding those differences between diseases, between the care settings, between the different types of intervention, and the dose of that intervention, right. Each one of those in and of itself could be replicated 100 times over in different populations of patients. So we’re just at its infancy, I think.
Eric: And Krista, the end of your editorial, you say the review also underscores the need to fund develop and test interventions that provide relief of symptoms, interventions to improve quality of life and interventions for diseases, for which little or no randomized trial events currently exists. Where do you fall on to this lump or a splitter argument?
Krista: I am sorry to say I’m also a both, because on the one hand, I have some degree of drinking the Kool-Aid. And I think that hospice and palliative care can benefit the vast majority of people. And we are not there yet. And I know that if you are talking about getting policy support, if you’re talking about getting buy in, if you’re talking about even branding palliative care and getting people to say, “Oh, that’s what you’re giving me? I want that, that’s a good thing.”
Krista: Sometimes you need to make sure that they feel like you’re really helping them. With again, back to the issue of people with dementia and caregivers. Palliative Care says it cares for the whole family unit. But we get paid, the payment system, the policy system is around the patient provider relationship, which sort of leaves the caregiver out of the loop a bit. And that’s a really big problem with people with neurodegenerative illnesses, because they need a lot of care and support too, and the cost of caregivers can change over time.
Krista: And so that’s a case where I think adapting, having a two way street between the dementia experts and palliative care experts working together to continue to develop and adapt as some of your previous podcasts have focused on palliative care interventions for that particular disease, great randomized control trials of those interventions, that will help create buy in in the future, such that people really believe when you have a large trial of a very heterogeneous patient target population that they will really believe those outcomes worked for everyone.
Eric: And Kieran, you’re in Canada, of course you have universal health care. I’m assuming that in Canada, palliative care is already in its idealized form, and you don’t have the same sort of issues about payment not aligning with needs and all that crazy stuff.
Kieran: No, I wish I could say that that was the case. We live in a country where people self identify with an insurance system rather than some other way. And Canadians are so proud that we have universal health care system. It’s kind of a strange phenomenon. But it’s susceptible and vulnerable to many of the same challenges seen in other jurisdictions like the United States where it’s not necessarily universal.
Kieran: There are payment incentives, financial incentives for physicians to use and deliver palliative care. There’s all sorts of financial incentives and financial barriers. As Krista said, there’s no caregiver fee code for physicians to claim when they’re providing care and attention to the caregiver. And so that can be a barrier sometimes as well. So, I think that we have a different system, but many systems share the same problems, and a lot of that can be financially linked as well, unfortunately.
Eric: I got one last question because, Krista, I think for the first time, we mentioned hospice and palliative care. Where did hospice fit in to all of this? And how should it fit?
Kieran: So, in Canada, we don’t really have a robust hospice system, like you have in the U.S. Will sort of colloquially refer to the hospice economy, sort of pejoratively in Canada, when we’re talking about U.S. hospice system, because there’s such a different funding and economic model about how Hospice is funded in the U.S. In Canada, there are very few hospice facilities, and most of them, at least half of their budget will come from charity, which partially explains why there are so few.
Kieran: We do have specialized palliative care units, where they’re sort of a effectively a hospital that’s set up for palliative care exclusively, or a floor within a hospital for that purpose. But again, those are few and far between. We’re talking about in Ontario, a few thousand beds, dedicated to palliative care, compared to the hundreds of thousands of beds for acute care and surgical care, right.
Eric: And I’m guessing for your article, there were no randomized control trials of hospice versus non hospice for non cancer patients.
Kieran: No, that’s further down the funnel.
Eric: Krista, you’ve thought about this a lot, how do you think about that?
Krista: I struggle with the pre hospice palliative care definition we’ve created in the United States where you’ve got the service of palliative care that is sometimes before a referral to hospice, but often, no referral to hospice happens at all. But Palliative care is the umbrella term that Hospice is part of. And in the United States, it was a policy and regulatory decision that was perhaps motivated a little bit by efforts to minimize costs to Medicare, that maybe you need to have a six month prognosis to be eligible for the Medicare hospice benefit, and be willing to make some trade offs.
Krista: And that’s gotten increasingly complicated over time, as the treatments that we have, that have palliative benefit have expanded, which is great news. But it’s tricky when you’re working off per diem. On the other hand, the Medicare hospice benefit, which aims to provide kind of all inclusive 24/7 access to care, an interdisciplinary team is better than a fee for service model for the just supports physician, nurse practitioner, advanced practice provider without the rest of the interdisciplinary team.
Krista: So I know sometimes health systems struggle to provide the full interdisciplinary team for the pre hospice palliative care services.
Kieran: Yeah, we certainly see some of those challenges related to fee for service in Canada as well, despite a universal health care system that’s supposed to, be all encompassing.
Alex: And one key sub analysis that you included in, in your paper was a home based palliative care. And I wonder if you could say a little bit more about why you did that specific analysis and what you found?
Kieran: Great point and question, Alex. I think a lot of the evidence, at least the evidence showing benefit for palliative care whether that was a randomized trial or observational studies, there seems to be the largest benefit coming from home based palliative care. And you can measure that in many different ways.
Kieran: But if you ask patients where they want to receive their care, and ultimately where they want to die, if possible, most people will tell you they want to die at home. So I think that that kind of an approach is really trying to meet patients where they want, and they need their care to occur.
Kieran: So the reason that we included that in addition to looking at a specialized palliative care physician, or an interdisciplinary team, as part of these sub analysis, was to try to take it one step further from, does palliative care work? Yes or no, to start to raise some questions rather than giving the answers. And if it does work, what are some of the key components. And certainly those are not all of them, but those are some of the ones that we thought were most important, where there was enough evidence to try to examine that further in a research framework.
Alex: I wanted you… Go ahead, Krista.
Krista: I wondered why you chose to look at just the people in home settings as opposed to look at each of the different settings? Or is that something that you’re planning to do in the future?
Kieran: Great question. The answer to that is more of a practical one, in that, as you probably know, but for our listeners who maybe aren’t so familiar with, when you’re looking at testing all of these different theories, you need to have enough patience, or in this case, trials to be able to detect differences between the so called power of your study, right. And so, the more we test, the more we’re likely to find a false positive just by chance. And the more layers to that testing that we add on, the more studies we need to have to be able to measure a meaningful difference between them, statistically speaking.
Kieran: And so we just didn’t have that power with only 28 trials. And so we just had to restrict what we thought was the most important and had the most evidence for it to begin with.
Alex: And when you looked in that subgroup of studies that included home based palliative care as an intervention, what did you find?
Kieran: So we didn’t find any real benefit when it came to home based interventions as far as the outcomes that we’re looking at. But I think, I really want to caution people to sort of not interpret that as like, “Let’s give up on home care.” Right, the way that the statistical analysis are done is just to say that is home care? Does it have some signal that it benefits within this question that we’re asking, that kind of narrow question of palliative care and non cancer illness.
Kieran: And there’s even more reasons that we’ve already discussed today, that are often more statistically related as to why you might not find a difference or a benefit. So I would just say that there is a lot of evidence that lines up that says that home care really is beneficial. And I think, again, if we keep it in the back of our minds of why we’re doing this, is to meet patients where they want and when they want it. Home is still where the heart is, so to speak.
Alex: And how about when you looked at the subgroup of studies that include specialized palliative care?
Kieran: So in that sense, we actually looked at the presence of the physician as far as specialized palliative care, and DO has done some prior work to look at interventions and describing them as specialist versus non specialist. But in this case, one of the question-
Alex: As a physician trained in palliative care.
Kieran: That’s right. And we wanted to sort of inform the design because physicians are an expensive resource, and they take a long time to train. And so we wanted to try to get the question answered, or at least start to raise some future questions about, should these programs include physicians as part of this incredible interdisciplinary team? Or can we leave them out and focus on other providers who are equally good at delivering palliative care, like social workers, nurse practitioners, etc.
Kieran: But we did find, overall that there was often a benefit in all, or almost all of the outcomes when the presence of that Palliative Care Physician was there. So I think they have a skill set they bring to the table, in addition to the team that they all support each other in helping patients.
Alex: So as we’re moving towards wrapping up now, maybe each one of us can say, what is the key takeaway of this study for practicing clinicians, for health systems, for health policy, or for future research? Everything’s on the table. What is a one key takeaway, there are many key takeaway combs and implications of this study. Kieran, we’ll start with you, then we’ll go to Krista.
Kieran: All right. I think that the key takeaway for me is, let’s start on the, I’ll focus on the clinic on the provider side, that palliative care, I think should be viewed as an important part of a multi faceted approach to delivering what we would call high quality care to patients who are with serious illness.
Kieran: But I think that almost every intervention in medicine, including palliative care, it has its limits, and we shouldn’t be viewing this as a one size fits all solution. So I don’t think people should be thinking about like palliative care for all. And I think we need to think about its palliative care for who, when, and where.
Alex: That’s great. And Krista.
Krista: I think that was so nicely said, Kieran. I would add, and as they develop those interventions, they need to be tested really well. We need really high quality science if we want our next meta analysis to show the kinds of benefits that we instinctively think we should be seeing.
Alex: And didn’t you point out Krista that in order to get high quality science, you need funding for that science. And there are some institutes, right, at the NIH that have contributed very little to Palliative Care Research. And not coincidentally, they line up with several of the domains where we have very few studies, right, and stage renal disease, right.
Alex: Yeah, NIDDK. So little money. One take home for me… No, let’s go to Eric next, Eric, what’s your take home?
Eric: I think my take home is, I really love this. And I think for me, it really captures the, if somebody says palliative care does x, really taking a pause and saying, what do you mean by that? You’re kind of using that family meeting skill set that we have to explore more? Do they mean it for a specific patient population? What kind of healthcare intervention are they looking at? Does it especially as a primary? To really drill down, and I think we need to drill down into the field. What are we talking about when we say the word palliative care does something?
Alex: And for me, one other implication is that you didn’t specifically look at costs. But you did look at acute care service use, right? Hospitalizations, emergency department use, and these are really expensive components of care. And what you found is that a palliative care non cancer chronic illness, reduced emergency department visits, reduced hospitalizations, and the major growth of palliative care within the United States over the last two decades has been fueled, in part, in large part, in the inpatient setting within hospitals, because palliative care was shown to reduce hospital length of stay and most payment is tied to how long the patient is in the hospital, right? You get a lump sum of money for however long they’re in the hospital.
Alex: And your study, you found that palliative care reduce emergency department use reduced hospitalizations. And as we’re moving to health care systems, health care policies that take care of populations of patients, that incentivize taking care of populations. Those are two of the most expensive outlays for the health systems.
Alex: And so I’m hopeful that health systems will say, hey, this is really important here. We need to invest in palliative care for non cancer, serious illness in the ways that we’ve previously developed palliative care in the inpatient setting. And as you said, Kieran within cancer centers. Health systems, they do this because it saves money. But I think at the same time, it’s the right thing to do.
Kieran: I just wanted to add, Alex, costs is almost a dirty word in the palliative care world, right. It’s like never talk about money, but health care is paid for by the people of society who live within that jurisdiction, and it’s important. And palliative care is not trying to save costs. But guess what, if it’s a side effect of the drug, then palliative care for all in that case, right.
Kieran: It’s okay to save costs and improve care. And that’s kind of getting at that concept of value, which is probably a discussion for another day, but I think it’s important to say it’s okay, that it saves costs too.
Krista: That being said, I’d like to add that, I’d like to think of cost reduction as a process measure, because at some point, we’re going to stop reducing costs because we will have gotten palliative care for everyone, and it will still be a good model of care for people to get.
Kieran: I completely agree, Krista.
Eric: Well, Kieran and Krista, I want to thank you for joining us on this podcast.
Kieran: Thank you.
Eric: But before we close up, how about Alex, you want to give us a little bit more?
Eric: That was awesome, Alex.
Krista: Thanks Alex.
Kieran: Love that song. Well done Alex.
Eric: Kieran, a very big thank you for joining us again for this podcast.
Kieran: It was my honor to be on here. Thank you guys so much for inviting me.
Eric: And Krista It’s always good to have you on too.
Krista: It’s always a pleasure.
Eric: And to all of our listeners, thank you for supporting the Geripal Podcast. If you have a second, please share this podcast with three of your closest colleagues. And a very big thank you Archstone Foundation for your continued support. Goodnight everybody.