Eric 00:00
Welcome to the GeriPal podcast. This is Eric Widera.
Alex 00:03
This is Alex Smith.
Eric 00:04
And Alex, who do we have on the podcast today?
Alex 00:06
We are delighted to welcome Laura Shoemaker, who is a palliative care doc at the Cleveland Clinic and primarily practices outpatient palliative care in the cancer center. Laura Shoemaker, welcome to the GeriPal Podcast.
Laura S. 00:18
It’s really glad to be here.
Alex 00:19
And we’re delighted to welcome back Laura Petrillo, who’s been on several times. She’s a palliative care doc and researcher at Massachusetts General Hospital and Harvard Medical School. Laura Petrillo, welcome back to the GeriPal Podcast.
Laura P. 00:34
Thrilled to be here. Great to see you guys.
Eric 00:36
And we’ve got an interesting topic, maybe a little bit of debate about survivorship. Should palliative care be in the survivorship business game?
Alex 00:47
The answer is clear.
Eric 00:49
Will it be clear?
Alex 00:50
I don’t know. [laughter]
Eric 00:51
All right.
Alex 00:51
The Lauras will help us.
Eric 00:52
The Lauras will help. Laura Shoemaker, I think you have the song request. What song did you choose?
Laura S. 00:59
I Will Survive by Gloria Gaynor.
Eric 01:03
Now, do I have to ask why you chose. Like, is there a deep spiritual or connection why you chose the song otherwise, other than the clearly linking to survivorship?
Laura S. 01:14
Well, it was the only song title I could think of that had the word survivor in it or survive in it. And who wouldn’t love to hear the two of you take a stab?
Eric 01:25
The one of us. The one of you.
Alex 01:28
It’s too bad Laura Petrillo is not here. I do remember a time. Eric, do you remember the time we did that podcast about CPR? How should we talk about CPR? And Laura Petrillo was singing. What was the song?
Laura P. 01:43
I don’t know if I remember which song, but I do remember singing with you.
Alex 01:46
Yeah, yeah. It’s the one that you do the CPR to. Okay, here we go. A little bit of I will say.
Laura P. 01:52
That one bites the dust. Probably not that one.
Eric 01:54
Another one. That’s the song.
Alex 01:55
It was the one from that. That Grease. Okay, here we go.
Alex 02:02
(singing)
Eric 03:24
That was wonderful.
Alex 03:25
That was such a fun song. That’s a great one.
Laura P. 03:29
It is a great song.
Alex 03:30
Thank you, Laura.
Eric 03:32
So, Alex, I always love podcasts where we talk about something maybe a little bit debatable. I’m sure it’s contentious. You brought this up as a podcast for me. Why did this come up?
Alex 03:45
This came up because I was in Cleveland Clinic doing grand rounds. I was there and at University Hospitals, had a great visit. Great day in Cleveland. And after the grand rounds, I had the opportunity to meet with the palliative care clinicians and the fellows, and I said, what do you want to talk about? What’s an important issue? What should we do a podcast about? And Laura Shoemaker said, I want to talk about survivorship. And you told a story about why that’s. And if you could share that story with our listeners by way of starting out, that’d be great.
Laura S. 04:14
I did, Alex. I said, you know, well, I don’t really know, but there’s this thing I’ve been thinking about, and I’m wondering if others are thinking about it for, I don’t know, six to 12 months ago, I was sitting in a Cancer Institute leadership meeting, and we’re running through the topics of the agenda, and survivorship came up, and, you know, I’m politely listening to others. And one of the leaders in the room said, well, I don’t know. That’s Laura’s area of expertise. What are you going to do, Laura?
Alex 04:43
And you thought, wait, it what?
Laura S. 04:47
I laughed out loud because I was a bit shocked. You know, kind of looked over my left and my right shoulder and. And I. I said something to the effect of, wait a second, I thought I was Dr. Death, and now I’m, you know, Dr.
Laura P. 05:01
Survivor.
Eric 05:02
How amazing of a cultural shift was that? Like, only people at the end of life now. Oh, yeah, like you have from birth till death, right?
Laura S. 05:13
Like, what are we doing? Right. And then I’ve been in this field for almost 20 years, and I think, how many other people have been in a specialty within the medical field that has such dramatic change going on in who we are and what we do. So that’s why I brought it up to Alex.
Eric 05:32
Fascinating. Laura, what’s your story? How did you get interested in this topic of survivorship?
Laura P. 05:37
Well, as you know, I’m a researcher, and my. I started out being interested in prognostic communication, and I work now in a cancer center, in the cancer center at mgh, where the early palliative care trials happened. And we’re still early palliative care trials are on. And I was seeing a lot of patients who were receiving novel therapies, targeted therapy, and immunotherapy, and just realizing that they were having a really different experience of advanced cancer than what even I had learned in residency and fellowship, that just things were changing, like, minute by minute.
And I was curious to learn about how people were talking about what to expect after a diagnosis of advanced cancer, how clinicians were counseling patients, how patients were understanding their prognosis and making decisions. But then I started talking to patients, and I talked to patients about what they wanted, and some of them wanted help with prognosis and prognostic understanding, but a lot of them wanted help with how do I live well in this new kind of area that I’m in, in this new kind of liminal space where I have a life limiting illness, and yet I feel like I can get back to myself and my normal roles. And there’s something different certainly here, but I’m trying to figure out how to live.
And that really resonated with what we often talk about in palliative care, is helping people not just die well, but live well. And so I started to think about how that those concepts, the things that people were asking for, healthy lifestyle behaviors, coping, support, like thinking about the future, really, and like a future not after cancer, but just sort of with cancer, but with cancer for a while longer than we think about in the advanced cancer space usually. It made me start thinking, and I.
Alex 07:22
Think there’s a spectrum in the field about what the goal of palliative care is. And as the law both Laur just articulated, there are those in the field who feel like what we do is primarily help people think about death, be prepared for death, and help them through that dying process. And there are other people in palliative care who feel like, no, we focus on helping people live each day as good as it can be. That’s our focus on living well as long as possible, living as well as you can for as long as you can. And I think that tension is actually healthy for the field because both aspects.
Eric 08:01
Are Important do you feel like that’s an older tension? How many people do you think, due to palliative care are thinking like, we, we mainly focus on helping people die or.
Alex 08:12
I think quite a few, particularly in the hospice end of the spectrum, particularly some people who, yeah, maybe like go into it, more Buddhist influence. What do you think?
Laura S. 08:22
Yeah, take it, Petrillo.
Laura P. 08:24
I was going to say, I think referring clinicians attitudes definitely still see us as end of life clinicians and end of life experts. And so that’s a challenge when, like everything that you see is a nail. Are you a hammer? Like, we just. In the hospital particularly, you know, we’re seeing patients close to the end of life and early palliative care, as much as it is the gold standard and guideline recommended, there just simply aren’t early palliative care clinics nor the capacity for people to be seen from the time of diagnosis. So we end up seeing people when they’re in crisis, when they’re closer to the end of life. And so just the reality of who we’re referred is dictating our practice not to say that once they’re with us, we don’t want them to live as well as possible.
Laura S. 09:04
And I think that’s where the irony came from as well, because of the not only confusion within our field, but the confusion of patients and families who are the consumers of palliative care and the referral sources. Part of the thing that shocked me most in that meeting was this is a cancer researcher who thinks of me as the survivorship expert. And I’m so used to the opposite misconception.
Alex 09:28
Right, right. You’re the Dr. Death Conception.
Laura S. 09:32
Maybe it’s all just misconception.
Eric 09:34
I got a question on that because it’s interesting because we were talking a little bit palliative care and like a little bit about, like, confusion around, like, what does palliative care mean? What does it do? What is serious illness like? You know, we’re trying to improve quality of life for people with serious illness. What does serious illness mean? But when I think of survivorship, I’m even more confused. What the heck, like, what was that cancer researcher thinking about when they said survivorship?
Laura S. 10:02
Do you have an idea about NCI’s definition of survivorship? Which has changed, go figure. Since I.
Eric 10:09
What’s the definition of survivorship?
Laura S. 10:12
So the NCI definition of a cancer survivor is anyone with a history of cancer from the time of diagnosis until the end of their life.
Alex 10:22
So just to say that again, from the time of diagnosis.
Eric 10:26
Oh, so this is an Easy debate. So every oncology clinic is a survivorship clinic by definition then, right? Like at the time of diagnosis.
Laura P. 10:37
So I felt a real strong need to clarify terminology because I haven’t mentioned this yet, but I’m actually the task group chair of the National Lung Cancer Roundtable. Survivorship Task group as a palliative care.
Eric 10:48
Okay, okay.
Laura P. 10:50
Survivorship role. And at the beginning, when we convened this task group a couple of years ago, I co lead it with Jill Feldman, who’s a patient advocate, just extraordinary person. I felt like everybody who had been assembled didn’t necessarily know what survivorship meant either. And so we kind of came to consensus in our group. And I also did a kind of a deep dive on where, like, the history of this and where it had come from. And what I came to determine was that survivorship, like the concept of survivorship, is that idea of being a cancer survivor. So anyone. From diagnosis to death, but all the aspects of, like, living the state of being of somebody living with cancer, that is apart from the treating the tumor aspect of it.
And so when patients talk about survivorship, they want attention to all of those pieces of their life that aren’t necessarily being attended to in their medical care. And then I became a little bit of a stickler about using the word survivorship care when we’re talking about the clinical care delivered much in the same way you would distinguish childhood and pediatrics. So you don’t talk about. When people are talking about survivorship, they want to talk about that state of being. But when they’re talking about survivorship care, it’s really that medical care that’s delivered to survivors and that has really specific meaning to people and actually is very regionally variable. And so we can go into what survivorship care has historically looked like.
Alex 12:12
Yeah, let’s do that.
Eric 12:13
I’m going to step back because I’m still confused. So if everybody who’s been diagnosed with cancer, everybody who sees an oncologist, everybody who gets like a basal cell carcinoma, the skin gets it lopped off as a cancer survivor, then it seems like we’ve expanded the definition to be this huge thing where everybody. And then if you. Beyond cancer, everybody, the dementia survivor, high blood pressure survivor like you, you can think about this for every disease, because palliative care is not just cancer. Like, is there. Is there a role for expanding it to everybody?
Alex 12:50
Or like, if everything is survivorship, then nothing is.
Eric 12:52
Nothing is survivorship.
Alex 12:54
Yeah.
Laura S. 12:55
And I’m not a researcher, and I certainly don’t. I’ll just. I’m glad to have the opportunity to say I don’t consider myself a survivorship expert. I am a practicing palliative clinician though, who takes care of a lot of people with cancer and people with cancer care a lot about how we name them and what we call them. And they’re even telling us they’re getting tired of our language about their cancer journey because we don’t like the word battle or war. Right. So I think we do a lot of naming of people in their experiences and I think we’re seeing the inherent challenge in putting names on things that are really unique person centered experiences.
Laura P. 13:39
Yeah.
Eric 13:40
And that’s interesting because I actually read some research around this where there is a. It’s a somewhat polarizing term to be not survivorship, but cancer survivor. That term is like, some people are okay with it, some people really don’t like it because it conveys either that they’re done with like all of the cancer stuff, like, but they’re still worried about it, or that it’s too fluffy, optimistic, like, oh, they’re a survivor. Yay, you’re a good person survivor.
Laura S. 14:10
When you ring the bell and who gets to ring the bell?
Eric 14:14
What about the patients in my hospice? If I walk to them and say, hey, by the way, I learned today you’re a cancer survivor, they’ll look at me probably really strangely.
Laura P. 14:24
I do find it weird to use in that context, but it is, I think that part of the goal of naming everyone as a survivor was to say there are models of quality survivorship care. And there’s models, but quality care for survivors. And it encompasses all of these different aspects of holistic medical care. And so I think part of including everybody in the definition of survivors say that everyone deserves that holistic type of care, whether it’s delivered in a survivorship clinic or not. And we can talk for a second about what survivorship clinics look like.
Eric 14:54
Who, like, who is eligible for a survivorship clinic and yeah, what does it actually look like?
Laura P. 15:00
And in the context of that role as a survivorship task group chair, we’re actually conducting a national survey right now about survivorship care. But there has been some work on this already. So survivorship clinics sort of grew out of the need to continue to do cancer surveillance for people after they’d finished definitive therapy for cancer. And a lot of them are sort of led by passionate leaders who are just driving this, like the holistic aspect of it. So as people transition out of kind of say breast cancer, early stage breast cancer treatment, there became a focus on kind of packaging them up to hand back to primary care to say, what was the treatment that you received? What is the surveillance you’re going to need?
And maybe continuing to see people for some period of time. And it is very regionally variable. There are some cancer centers that continue to kind of own their cancer survivorship care to make sure that there is timely follow up and that people are sort of plugged back in. So often it would come about as. As kind of an embedded app within an oncology group who would take an interest and hold a clinic a half day, a week and kind of continue to see people longitudinally.
And they recognized that people were coming to them with late and long term effects of their cancer treatment, ongoing symptoms, and ways that their identity and aspects of their psychosocial experience had changed. And they were attending to those too. And so it kind of grew kind of organically, but variably. I mean, there’s, I mean, we can get into all the parallels with palliative care, but there are a lot of parallels in terms of you’ve seen one survivorship clinic, you’ve seen one survivorship clinic.
Eric 16:34
But. But it sounds like the eligibility for this is more of the colloquial term of like, what is cancer survivor, which is somebody who has. Is in cure or long term remission from their cancer. And we’re going to think about what’s this kind of next phase when they’re not getting active treatment anymore because they’re in long term remission or they’re cured.
Alex 16:55
And I would guess that most doctors and maybe most patients, when they hear the term cancer survivor, that’s what they think of. They don’t think of the person who’s just been diagnosed with stage four lung cancer or the person who’s in the hospice unit dying of stage four lung cancer. As a cancer survivor, is that fair to say? Does that ring true to you too?
Laura S. 17:17
That certainly rings true to me. Just as a practicing physician, I was a generalist for a couple years before internist, before I became a palliative care doctor. So I mean, that’s kind of what comes to mind, I think too. Survivor historically meant to me a condition, regardless of what you call it, where cancers in the rearview mirror.
However, as somebody who takes care of people at all stages of cancer, even those who have technically qualified for the word cure or are in partial or full, short or long term remissions, for many of them who are still living with the physical and emotional burdens of their cancer experience and the things we have done to them to Put them in that state of remission. Cancer is very much not in the rearview mirror and it’s a part of their ongoing daily experience and likely future experience.
Laura P. 18:13
I agree.
Eric 18:13
That was really well said.
Alex 18:14
Yeah, it’s not so black and white. Yeah, there’s nuance here. Laura Petrillo.
Laura P. 18:18
Well, I was just going to add that I think that the whole kind of advent of newer therapies has led to the point where people with incurable cancer are starting to be drawn to the moniker. And I think that where the whole idea of having advanced cancer survivorship sort of came from was people were trying to think about a kind of analogous population of patients with metastatic cancer who had achieved stability. That that idea of kind of achieving stability and needing ongoing care for cancer related complications was sort of where the advanced cancer survivorship idea came.
But it has definitely, I think, taken on more than that, like more meaning than to that. Than that to people, to encompass the idea of any type of, you know, this kind of holistic care is, you know, the survivorship care. And so in the metastatic space, it grew because of the new therapies that are helping people live longer.
Eric 19:14
So you’re saying are there now survivorship clinics where it’s not kind of the older school rear view mirror, but it’s survivorship clinics for people with advanced cancer who are just living longer years with this, or is this something that we were thinking about in the future?
Laura P. 19:35
Both. So I think that the example I have locally here. So one of my colleagues, Riley Fadden, is a melanoma NP and she’s an expert in immunotherapy complications. And she started a clinic specifically for people with metastatic melanoma who have graduated, who have done their immunotherapy, but are now in a stable position. And so I think there are places that have developed things like that. There’s also the idea of general survivorship clinics that serve early stage survivors and that would traditionally kind of turn away patients with advanced cancer because it gets complicated.
In a support group. If you have people who have early stage cancer and then you have some people with, you know, advanced cancer and who are dying of their disease. But then slowly, people with advanced cancer have been sort of trickling into those groups because they want some of the types of things that are being offered to patients with a history of early stage cancer, like, you know, physical activity, nutrition, kind of thinking for the long term, like thinking about how can I be as healthy as possible because I plan to be here.
Laura S. 20:35
LAURA I think we see jumps between Perhaps what I’ll call a traditional survivorship clinic, where in the part of the process of the clinic is to check the boxes for, say, the commission on cancer, so that you can say, yes, I have a survivorship clinic, and it meets the criteria that I need to meet so that I can have this accreditation, because we’ve staffed those in lots of different ways, and patients come in and say, yes, I’m up to date on my mammograms and this, that, and the other, and I’m established with a primary care doctor, and I still have my neuropathy, and I can’t play golf or, you know, I’m feeling rotten.
And sometimes the people who are staffing our survivorship clinic don’t have the expertise. So they think, who can really help this person with ongoing physical or emotional suffering? Let’s send them to the palliative care clinic, and boom, now you’ve got an embedded survivorship population in a palliative care clinic because they’re not actively getting treatment for cancer, but they have the burdens of cancer and want to improve their quality of life.
Alex 21:43
This is a great point. Is this an okay time to do the debate? Can we do it now? Okay, here’s what we’re gonna do. We are all gonna make the case. We’re gonna start by making the case that palliative care should own survivorship, that palliative care is extremely well suited to meeting the needs of survivors. And for this purpose, we are going to have a flexible definition of survivorship. Or should we say people, we should have some agreement about what survivorship is.
Eric 22:14
Do we use the.
Alex 22:16
Do we want to use the NCI definition or the colloquial definition?
Laura P. 22:20
Oh, I think we should definitely use the current NCI definition.
Alex 22:23
Okay, we’ll use the current NCI definition. Okay, so we’re going to start off by that. Palliative care should own this, and everybody’s gonna argue completely in favor, as strong as they can, and then we’re gonna argue the opposite, as strong as we can, and then we’ll see what we really think. How does that sound?
Eric 22:39
Yeah.
Alex 22:39
Okay, who wants to go first? As palliative care should own this. All right. Laura Shoemaker.
Laura S. 22:45
Palliative care should own this. Who better than us? Who with better expertise than palliative care clinicians to assess all of the domains of suffering? Physical, spiritual, social, emotional. And who else has the interdisciplinary team already a part of their infrastructure to attend to these complex domains of suffering?
Alex 23:08
So you said, as you said before, like this, there are so many parallels here, like we have the skills, we have the, you know, people may develop pain from the cancer or from the treatment for the cancer. They may have psychosocial scars from the experience of the cancer and they’re very much living with it. Their family may be impacted, they may have social pain. And we have the multidisciplinary team expertise to meet the needs of these patients. Is that what I’m hearing, Laura?
Laura S. 23:35
Right. That’s the mission of palliative care, right? To reduce suffering for patients and families impacted by serious illness.
Alex 23:41
That’s good, that’s a strong argument. Laura Petrillo, what can you add?
Laura P. 23:45
So in addition to reducing suffering, I think the emphasis that we’ve talked about, about living well, that we do that very well and that is something that we focus on. You can reach for the palliative care, early palliative care guidelines and say that all patients with advanced cancer at least should be seeing palliative care. And so the patients already have, there’s already a strong evidence base for patients to be seeing us. And with the transformed experience, I would argue that there are at minimum primary survivorship skills that absolutely all palliative care clinicians should have to care for patients.
Laura S. 24:23
In this new era.
Laura P. 24:25
And so if we were to make an argument for hanging a shingle to have survivorship care, I would argue that it’s under a broader umbrella to acknowledge what cancer care is now, to acknowledge that there things are on a continuum that people who might have had been diagnosed with a disease that’s incurable during the time that they are living with cancer, there might come along a therapy that makes it so that they can live with cancer for a long time.
So this, this has to be something that is part of our skills to be able to provide survivorship care. And would it make sense to blend with and have the care be along a spectrum of providing surveillance in certain places, providing palliation in certain places, and being holistic, person centered care that helps people live well with our mission.
Alex 25:11
So this is great. I’m just going to do the palliative care thing and we’re reflective listening here. So I’m hearing that this is inescapable, that palliative care, because the treatments now have shifted such that, you know, patients who were once, you know, core patients who palliative care had to see because the guidelines said that we should see them, because the evidence base is there. Patients who have advanced lung cancer, for example, some of these patients are now living much longer, they’re in remission for longer periods. Of time.
And we should still see. We need to see these patients because it’s that gray area, and you never know when one of your patients is gonna be in there. And that’s a specific skill set. And some of those skills are the same as palliative care, but some of them are actually distinct, and we need to learn those skills in order to provide outstanding care for the patients that we’re seeing today. Is that fair? Okay, Eric, what do you got to add?
Eric 26:06
I’m gonna say if the definition is everybody who is diagnosed with cancer is a cancer survivor, and this survivorship is. This is what we do. We currently are doing it. And I would argue, I’m bringing from what I’m hearing from Laura, that we should have these additional skills. It’s okay if you focus on a subset, people with advanced cancer that are maybe undergoing treatment, maybe failing, not failing treatment, because they don’t fail treatment, that our treatment is failing them. That is your subset of cancer survivorship. If we adopt that definition, it’s currently what we do, so we should be better at it.
Alex 26:37
Okay, so we’re already doing it. Like, if. If everybody was diagnosed with cancer is a survivor. We are seeing them already. Yeah. It’s inescapable.
Eric 26:48
And then we should do that for every other disease.
Alex 26:50
Okay. And we should do that for other diseases, too. Oh, boy.
Eric 26:53
It’s not just cancer.
Alex 26:55
We’re not reducing to the absurd yet.
Eric 26:56
No, no, no, no.
Alex 26:57
We’re still on the pro. Okay. We should.
Eric 27:01
I think there’s important skills that we need to learn.
Alex 27:04
All right, I’ll add that we develop strong relationships with our patients. And even if you think about survivorship as the colloquial definition, you know, people who are long, who are in remission, have experiences where they’re, you know, maybe cured, maybe not, or they go for years without recurrence. We have such strong relationships with these patients. We should be the ones to continue to care for them, because so much of care is relationship dependent. And one of our core principles in palliative care is non abandonment. Let’s not abandon these survivors as they are transitioning to a different phase in their cancer experience. All right, all right, let’s see. Listeners, let us know if you’re convinced.
Eric 27:59
Oh, we got the other side.
Alex 28:00
Okay. Now we’ll talk about the other side. All right, who wants to take the argument that palliative care?
Eric 28:06
I suggest we do reverse order because I want to hear Petrillo last.
Alex 28:09
You do?
Eric 28:10
Yeah.
Alex 28:10
Why don’t you give our guests first.
Eric 28:11
No, no, no, no. Because she’s gonna rah, rah, rah. Oh, actually, it’s up to you. Do you want to go first or last on this one?
Laura P. 28:19
Either way is fine with me. Yeah.
Eric 28:20
All right. Go ahead, Petrillo. Why should you got to argue the opposite?
Laura P. 28:25
Well, I want to just first note that just because we’re seeing survivors doesn’t mean we’re providing survivorship care. Survivorship care has a particular set of domains that are important to acknowledge and that have grown. And I want to acknowledge Larsen Nekhludoff’s work in this for developing a framework of what quality survivorship care is. And I think that there are part of what traditional survivorship care has done for patients with early stage cancer is actually help people transition to a longer term, more sustainable program of care with primary care or giving patients themselves the tools.
And so I wonder if a way to think about our role would be when we are seeing patients for whom survivorship care is applicable. We have the tools and we also are part of teams that provide survivorship care. But to say that we are going to hang a shingle and become experts in survivorship care in addition to everything else that we do.
Eric 29:21
And let me just be clear. So what you’re saying is while the patients we see may be defined as cancer survivors, even if they’re dying in hospice, we are not providing survivorship care because that is a certain set of competencies and things that we should be doing. Am I getting that right?
Laura P. 29:41
Yeah. But I do think that it needs to be rewritten. I think there are ways that all of that, our work needs to be rewritten and that survivorship care needs to be rewritten and evolve along with how treatments and critically how patients experience are evolving. And one fascinating aspect of this that we haven’t touched on at all yet is opioid prescribing. Huge part of what we do, huge part of patients experience living with cancer related pain and how cancer pain ebbs and flows. And we, I mean, I think there’s the, you know, simultaneous opioid crisis that we’re dealing with and the shift in how people have been dealing with chronic pain and opioids. And so part of this living longer with advanced cancer and, you know, having manageable, like longitudinal, longevity focused approach to care is responsibly prescribing opioids. So I think that’s a huge part of our responsibility.
Eric 30:31
So what’s your con then?
Alex 30:33
Right now we’re arguing as strong as you can, that palliative care should not own this. And I Think there’s an opioid prescribing reason there. I’m not sure if that’s where you’re going.
Laura P. 30:42
Yeah, yeah, no, no, I mean, I mean the obvious one is just that there’s not enough of us. There’s not enough of us already to manage all of the patients who are suffering with all the different serious illnesses. There’s not enough of us for all the people with cancer. There’s not enough of us for all the people with all the serious illnesses. So there’s a clear shortage. There’s a clear shortage in just staffing. There’s insufficient reimbursement. There’s all kinds of aspects that why we are not necessarily equipped to be able to manage this deluge of new patients that we would have upon us if we were to own every single patient with cancers. Survivors of care.
Alex 31:21
Great workforce issues. Tremendous workforce issues. Yes. Several great articles about this.
Eric 31:28
Shoemaker.
Laura S. 31:29
Yeah, so Petrillo took my primary argument, which is it’s not possible, it’s not practical. You know, as a former boss said to me, I don’t know, five, 10 years ago, what am I going to do, Shoemaker? Hire palliative care doctors forever? Right? You guys can’t do everything. So I’ll shift the argument just a little bit from the practice practical impossible to the. And caring for people is a medical community responsibility and we can’t be outsourced for all of these integral person centered needs that patients demand, you know, generally from their healthcare providers. I’ll take advanced care planning as, as an, as an example.
Right. Oh, you’re really good at advanced care planning, so why don’t you do all the advanced care planning? Well, can’t you ask a patient about their care goals and preferences and have them designate who they’d like to be their surrogate decision maker when they can’t write? So I mean, I think there are specialty and primary pieces here and perhaps that’s a way forward within the constraints of what’s practical and possible and to of course leverage expertise is to liken it to advance care planning. And you know where we differentiate advanced care planning from a serious illness conversation, for example.
Alex 32:51
Yeah.
Eric 32:52
So my con is because I heard the definition of palliative care earlier was for people with a serious illness if they no longer have a serious illness because they’re cured. Sounds like by definition, do they need to see a specialist in palliative care anymore if it’s no longer a serious illness, but there is a specialty that I feel like is really a much malign Specialty nowadays that is perfectly set up for this. And it’s especially called primary care.
Alex 33:25
I’ve heard of that.
Eric 33:26
Doctors who are really good at thinking about preventative therapy, nutrition surveillance, cancer screening, working with the oncologist screening, but surveillance screening. So maybe we should puts those resources into primary care. Yeah, that’s my con.
Alex 33:42
Yeah, that’s good. Okay, here’s mine. You didn’t go into palliative care for this, did you? Like, you just did it, right? Most of us didn’t. We went into palliative care to care for people who are seriously ill, many of whom were dying. Right. Like, that’s kind of like a core reason why we went into palliative care. And so much as some people may say prognosis shouldn’t be a part of it, it’s a part of it. Like, it’s a part of why we do this. It’s part of why our mission, right. To help people live well throughout their lives, including the very end of their life when they’re experiencing serious illness. And this feels disconnected when we get to the long term survivors from the mission of palliative care and why we went into it in the first place. And that dilutes us and that dilutes who we are. I worry about that dilution, and that’s my argument against.
Laura P. 34:38
Okay, so I wasn’t in debate club, but I’m just going to point out a couple of things.
Alex 34:41
Okay.
Laura P. 34:42
You chose a sort of straw man situation by using all patients with cancer and saying that we are now going to attend to all.
Eric 34:48
But that’s the definition.
Alex 34:49
That’s the definition.
Laura P. 34:51
But what I would say is that what people, what I’m hearing more calls for within the oncology community and from patients is for palliative care to be more present. Maybe not even. Nobody’s asking actually for palliative care. Palliative care is asking ourselves if we should be here. But I think people are calling for advanced cancer survivorship. I think they’re calling for people who are in this liminal space. And there’s a lot of them.
Eric 35:13
So they have a serious illness, they’re dealing with the serious illness, but they’re not dying right now from that serious illness. And that feels like we’re not using prognosis, but kind of like what Diane Meyer talks about, like he needs based palliative care, not prognosis based palliative care.
Laura P. 35:32
Right. And so I do think that there’s a lot of gray where patients who come to us appropriately because of the ways that, you know, where the guideline indicated be there or they have things that they need help with to live as well as possible. And should our care continue to be focused in the way that it always has been, I mean, I’d argue very strongly no.
Eric 35:53
Yeah. And Shoemaker, it sounds like your clinic is kind of like that right now. Right. Like you’re seeing people who are in this space.
Laura S. 36:03
Well, I see people who need me. And I mean, if a colleague refers a patient, I say, thanks for thinking of me. How can I help? And if I have the expertise to help that patient who’s sitting in front of me, I’m not going to tell them they don’t qualify for my clinic. The other thing I will say, just I don’t want to take us backwards, but I was in debate club and I am going to point out, I am going to point out to what something that Eric said about primary care and preventive care. I learned from the amazing Tori Fields just yesterday about Hawaii, the first state in our 50 states to have a palliative care benefit. And guess where it’s classified under preventive care.
Alex 36:47
Under preventive care.
Laura S. 36:49
So put Tori and that topic on a future. Jerry.
Eric 36:52
Tori Fields, we’re going to have you on board.
Laura S. 36:54
It’s fascinating. And she does such a great job of explaining how it got there and when you reduce unnecessary suffering and when you reduce inappropriate healthcare utilization. Right. Like, what about that isn’t preventive? So anyway, sorry, I couldn’t let that one go, Eric.
Alex 37:15
Oh, this is good.
Eric 37:16
Can I ask about your clinic then, too? Because this is the other, you know, the other big debate is like chronic pain. Are we a chronic pain clinic or do we do chronic pain and people have to have serious illness because we don’t have all the resources for a chronic pain clinic. Dedicated pain psychologists. Dedicated. So how do you think about this with like, do you have a nutritionist? Do you have all these other team members who are not just good at palliative care, but good at survivorship and.
Laura S. 37:47
Yeah, this is so interesting. So, yes, kind of. So in the cancer center at Cleveland Clinic, I oversee the department of palliative and supportive care. And under that umbrella is palliative medicine, psycho oncology, cancer social work, and integrative oncology. So, yes, I am deeply connected in a comprehensive, what I hope is going to someday be a comprehensive of supportive care for patients and families living with cancer.
The other thing I’ll say is I have a really great team member who came to me a couple weeks ago wanting to start a…what did he call it? I don’t think he used the word survivorship clinic, but basically patients who are physiologically dependent on opioids. And how can we get a grant to support a pain psychologist to bring them into the palliative clinic? And when we have our monthly opioid management review committee, we do have a pain psychiatrist and psychologists as a part of that interprofessional team to help guide the palliative specialists in these very complex cases.
So this is real. I mean, this is everyday stuff. And you know, you have like, on one side, I’ll say, like the anesthesia pain doctors, you know, you ask them for help and some of them help and others say, hey, Laura, if you don’t know how to take off the plane, don’t ask me to land it. And then I have a lovely oncology colleague who says, laura, we got the patient hooked on opioids during their cancer treatment. We can’t abandon them. I don’t have the expertise to do this. Please help me. Right, so we’re stuck with some pretty good expertise.
Eric 39:36
Yeah.
Alex 39:37
Yeah.
Eric 39:37
Okay, Petrillo, I got a question for you because this is going to be a research question, because I can think about a lot of research that we have great research in people with advanced cancer who have a limited life expectancy where palliative care has shown to be really beneficial. I can think of one study of stem cell transplant patients where they’re getting curative intent therapy, where there was benefit at least with some aspects, including depression, anxiety, quality of life. Do we need any more research in this area or is this full bore we should be doing survivorship? Or do we need to show that palliative care can add value to this survivorship of place?
Laura P. 40:24
Well, taking a step back, I think that the survivorship research space is as messy as the palliative care research space is in some ways. So there are not great. I think there hasn’t been strong convergence around what would be good outcomes to study in survivorship care.
Alex 40:42
Yeah, good question.
Laura P. 40:44
And I do think that advanced directives were mentioned earlier, but I think about advanced directives being analogous to the survivorship care plan because the field sort of coalesced around the survivorship care plan being the thing that was easy to measure for survivorship care, like putting on paper what somebody had been through and what their plan was going to be moving forward. And so people use that as a measure. Were people getting good survivorship care? Was there adherence to survivorship care plans? Did that improve, you know, clinical outcomes? And it really didn’t change things for People. And so there’s been a movement away from survivorship care plans.
You can kind of see where I’m going with the analogy to advanced directives, because they’re easy to measure. Did you complete an advanced directive? Does that have a later impact on the care that someone receives? So I would say that it’s not clear to me, at least at this moment in time, what is the optimal measure of whether survivorship care is beneficial. And I actually, to go back all the way, bring it all the way back to our argument for making it about palliative care. Quality of life might be the outcome, in which case we’re back in our wheelhouse, because from a patient perspective, that’s what people want help with. Right.
Laura S. 41:50
Yeah.
Eric 41:51
All right, Lightning question. You had a magic wand. What would you do right now, given that we know limitations of palliative care, limitations on the training of palliative care providers, like all of this stuff, the pros and cons that we talked about, what would you use that magic wand right now on with survivorship and cancer survivors? Shoemaker.
Laura S. 42:17
I would make survivorship around really addressing all the domains of suffering. Yeah. I think it’s what Laura Petrillo said at the beginning. There’s survivorship checking boxes, and there’s survivorship helping people live as well as possible. And I would want survivorship to truly be that. And whatever we do moving forward has to be about making people’s lives better.
Alex 42:42
Yeah.
Laura P. 42:44
Now a little bit. And actually say I’d use my magic wand to drop all the bullshit around terminology that we use to prevent us from just providing good care to patients. Like, why do we have to get in our silos? Why do we have to decide what we call? I mean, I understand and appreciate that we come from different places of training and we have certain expertise, but at the end of the day, to a patient, what they want is to be cared for, have all the aspects of their lives that have been affected by an illness be attended to.
And it’s up to us. I mean, it’s kind of our problem to figure out what we call ourselves, how we train ourselves, and who the specialists are to get there. But in my perfect world, with a magic wand, I would, you know, have a workforce that’s adequate to attend to all of those needs that patients have, whatever we choose to call ourselves.
Alex 43:29
That’s great. Can I answer?
Eric 43:31
Yeah.
Alex 43:31
Alex, you know, when I started studying palliative care in the emergency department, this is a long time ago now, maybe 20 years ago, I asked these emergency medicine people how do you feel if somebody would. A DNR or a hospice comes in the emergency department, they said, I didn’t. I don’t know how to take care of them. Like, I can’t do what I’m trained to do. ABCs. This is not why I went into emergency medicine, you know, and that’s changed dramatically over the last 20 years.
And now I think most of the palliative care fellows who matched at UCSF next year are emergency medicine trained. Like there has been a change in the field. Emergency medicine is adapting in the same way palliative care is shifting and has already shifted tremendously from being the brink of death consult service to being much more upstream. And this is pushing us in a new direction. That is really interesting. And we will adapt as well.
Eric 44:23
And my magic wand is I want to hear Alex play I will survive.
Speaker 5 44:28
At first I was afraid, I was petrified Kept thinking I could never live without you by my side but then I spent so many nights thinking how you did me wrong And I grew strong I learned how to get along and so you’re back from outer space I just walked in to find you here with that sad look upon your face I should have changed that stupid lock I should have made you leave your key If I had known just for one second you’d be back to bother me Go on now go walk out the door Just turn around now Cause you’re not welcome anymore Weren’t you the one who tried to hurt me with goodbye? Did you think I’d crumble? Did you think I’d lay down and die? Oh, no, not I I will survive as long as I know how to love I’ll know I’ll stay alive I’ve got all my life to live I’ve got all my love to give and I’ll survive I will survive hey. Hey.
Laura P. 45:50
Fantastic.
Laura S. 45:51
Well, it’s so funny.
Laura P. 45:52
I thought that you probably had already done that one, you know, So I was like, you know, not. It wasn’t on my request list. And then I was saying to Alex, I guess it kind of checks out that the palliative care podcast has never done I Will Survive on your podcast. That just fits right in with what we’ve been talking about. Here we are in a place saying I will survive on a palliative care pod.
Alex 46:09
This is a perfect choice. Laura Shoemaker.
Eric 46:12
Well, Laura and Laura, thank you for being on this podcast.
Laura P. 46:16
Thanks so much.
Laura S. 46:17
It’s a pleasure.
Eric 46:18
Thanks for the invitation and thank you to all of our listeners, whether your name, Laura or not, for listening and supporting the GeriPal Podcast.
