Episode 7: Academic Suicide

Daniel Eison  00:01
This is Dan, 

Sarah Dabagh  00:02
and this is Sarah. 

Daniel Eison  00:04
And we'd like to welcome you to PediPal

Sarah Dabagh  00:06
and new podcast about all things pediatric palliative care.

Daniel Eison  00:09
The views in this podcast are ours alone and do not represent our respective organizations, and they do not constitute medical advice.

Sarah Dabagh  00:21
Welcome to our seventh episode, which we're going to be calling "Academic Suicide."

Daniel Eison  00:25
Which is kind of an odd name for an episode, but if you listen to the episode, I think you'll understand why we're calling it that. And you will also understand why this has been stuck in my head as long as we've been working on this episode. And with apologies to GeriPal, and also John Cougar Mellencamp, I can't stop singing: "Little ditty 'bout Chris and Joanne, two American kids... starting palliative care in the pediatrics land," I guess?

Sarah Dabagh  00:59
I hope it doesn't come across as too rehearsed because it was zero rehearsed, but...

Daniel Eison  01:03
Oh, I am sure that's not what anyone's thinking...

Sarah Dabagh  01:04
I think we're gonna jump straight into this episode.

Daniel Eison  01:07
Let's let's jump right in.

Joanne Wolfe  01:13
Hello, my name is Joanne Wolf, and I am a pediatric palliative care physician at Dana Farber Cancer Institute and Boston Children's Hospital. 

Chris Feudtner  01:21
Hello, I'm Chris Feudtner, and I work at the Children's Hospital of Philadelphia.

Sarah Dabagh  01:26
Thank you both so much for coming. In trying to think of the introduction to this episode, I find myself wanting to start with the sentence, "Our guests need no introduction." And I'm wondering how that feels, when that first started to feel that way, and if you get that a lot, or really just in pediatric palliative care communities?

Chris Feudtner  01:46
I think I've gotten it for the first time today. So thank you very much. And I am, to be honest, often caught off guard when people know of me through work I've done. I am largely oblivious to that, although at some level, I think I've come to understand that that's true. I also don't like introductions, I find them sort of awkward, so I'm happy when people sort of bypass them.

Joanne Wolfe  02:11
It's hard for me to say when I transitioned from being unknown to being known. It's hard also to just sort of name how broadly I'm known. I think it's particularly within the pediatric palliative care community. I find it awkward too and I also find it awkward, for example, to know whether or not I've met someone before. Because you do meet a lot of people in the field. And I think transitioning from when you knew everyone to when you barely know anyone, and it's both exciting and there's some loss, I guess, in terms of how the community has grown. I mean, most importantly, it's amazing to see that we are a larger, highly impactful community right now,

Sarah Dabagh  02:56
How did the two of you first get connected?

Chris Feudtner  02:58
So, Joanne reached out to me about 2004. I had been back at CHOP for a couple of years. She had published her landmark work in 2000. So I knew of her very clearly, but we hadn't met. And she emailed me that there was an opportunity to actually come and give a talk up in Boston. It was as though I was meeting somebody I already sort of knew.

Joanne Wolfe  03:24
And I reached out to Chris because his reputation preceded him as someone who was doing really transformational work as an investigator, someone who was really identifying the scope of the problem. And that's one of the things that I think Chris and I value tremendously, is asking empiric questions related to how we care for seriously ill children and trying to uncover better ways through science.

Chris Feudtner  03:52
There weren't many other people who were even doing this kind of work. So we got to know each other in part because there simply weren't a whole lot of other people to get to know. I'm sort of phrasing it in the negative. It's been lovely to work with Joanne and get to count her as a colleague and friend, but the way that times have changed is that there's just much more opportunity, and that does create more of a crowd. And that's both great and it has, as an introvert myself, it does have issues that come with it. But I wouldn't want to go back. I mean, that was a very... paucity time,

Joanne Wolfe  04:29
Because we were kind of lonely and isolated, it was nice to have like minded individuals in your circle of friends and colleagues. There's no question that there was a lot of pushback in it, for at least for me in my early career, about why I was focusing on this area of work. There were times when I was told that I was committing academic suicide through pursuing this area of research. In fact, one attending who was a few years ahead of me in pediatric oncology, he simply said that casually walking by me in the hallway, "What are you wasting your career on this? It will never be supported, it will never be funded." And so having folks like Chris in my life was incredibly important.

Chris Feudtner  05:18
Yeah, we should compare notes. I also was told I was committing academic suicide literally, like, quote unquote, three different times. You know, it started to get to be funny. Like, you know, the first time you hear it, you're sort of shocked and put off, and the second time, well, that actually is not how it has played out thus far, you know, and by the third time it starts to become-- there's something else going on here. I think, to dovetail on what Joanne just said, there are still opportunities for this. The field is opening up not closing down. While it may not be as wide open, there are still many niches within pediatric palliative care where you may feel that there are not that many people and you reach out to a colleague, because you feel a little bit-- as Joanne put it-- a little bit lonely. You get peer support, you get the collaborative juices of ideas, etc. And that's actually priceless. It's something to proactively go out and seek.

Joanne Wolfe  06:15
We started our Pediatric Palliative Care Research Network, coined by, I think, Justin Baker, as "Peppercorn," as a means of bringing community together and providing support to folks who are earlier in their career who were pursuing academic interests in pediatric palliative care, and may have gotten the same kind of pushback that we got early in our career. The idea of bringing a sense of community is really important. And it has always been important, I think, to both Chris and I,

Chris Feudtner  06:48
You know, just to go back to this whole academic suicide, for every one person who is very negative, I actually can also count my blessings. I've had two bosses: back in University of Washington, Fred Rivara, and at CHOP, Lou Bell, and neither of them knew anything about pediatric palliative care. I explained it, and they said, "That sounds really important. I have no idea specifically what you need to do or how to, you know, give you advice and counsel, other than I think that that's a good thing to pursue." And as, I think, our field grows, we're going to have both the internal-looking collaboration like Joanne and I have developed, and welcoming new people in and really making it inclusive for everybody who wants to say "I do pediatric palliative care." And there will also be this inclusivity that will help the field of realizing that there are many people who are not ever going to want to say "I do pediatric palliative care," who are very supportive of providing the best care we possibly can to the children and families in really dire circumstances. So we have two frontiers of thinking about how we grow the field.

Joanne Wolfe  08:02
I want to dovetail on what Chris said about early... I would call them "sponsors." And I think that that's a critical need for folks who are early on in their careers. The first person that comes to mind is Dr. David Nathan, who is this renowned pediatric hematologist, who was, well, the Division Chief of Heme/Onc at Boston Children's, and the Chair of Pediatrics at Boston Children's, and then the President of Dana Farber Cancer Institute, both adult and pediatrics. And despite his very basic science and translational focus, he was entirely supportive of my academic career focus. And having someone like that in your sort of back corner is incredibly important. And just in general, this notion of sponsorship from folks who may be following completely different career paths, but have a sense of being able to recognize your own strengths and talents and also the importance of your work. And someone like Dr. Nathan was there for me, which enabled me to kind of ignore all those folks who were the naysayers, or the laggards as I like to refer to them, early on in my career.

Sarah Dabagh  09:18
So I don't think any pediatric palliative care provider will ever stop explaining what pediatric palliative care is, on a regular basis, with patients. But I'm wondering when you felt like you had to stop explaining it to colleagues.

Joanne Wolfe  09:31
I had at some point after years, and I can't really name the exact time point but it could have been more than a decade of developing a program at Boston Children's and Dana Farber, an a-ha moment, where there was a complete transformation from sort of being perceived as the grim reapers to being welcomed on floor: oh my god, here comes PACT, is how we're known, or the Pediatric Advanced Care Team, and getting a lot of compliments for showing up and continuing to show up. I remember showing up on the floor in the early days, and we approached the room of a patient, and the nurse looked at us with deep fear and said to us, "Why are you going into this patient's room?! He's not dying!" Now, needless to say, there was a different patient with the same name on the floor that we were supposed to be entering into the room of, but that was the vision and the-- and the fear, honestly, the sort of visceral fear of us approaching a patient, because we were seen in the early days as a death-and-dying service. But I can't say that there was like a moment, but more you keep up with the steady drumbeat of showing up and doing your work as well as possible. And you know, and hoping that you're making a difference, and then seeing that you're making a difference. And suddenly, it's just this culture change or transformation within an institution. Now, that's not to say, again, that there aren't folks who may never value specialty palliative care, like they don't value specialty anything, right? They may not want to welcome a consultant into the care of their patient, feeling that they have ownership and expertise sufficient enough to be able to deliver the care of themselves.

Daniel Eison  11:27
Palliative Care, specifically, I guess, we'll say pediatric palliative care, did start out in this very sort of skeptical environment with people telling you, "Don't research this, don't practice this." How do you think the field's development has been affected by being born and raised in that kind of an environment? Do you think that the field has drawn in a certain kind of person to be a practitioner? Do you think that the research has gone in a particular direction because it came from, and to some extent still faces, that sort of skepticism and that need to evangelize?

Joanne Wolfe  12:06
I have lots of thoughts about what you just said. But Chris, you go first, this time.

Chris Feudtner  12:10
I'll take a slightly different approach to answering the question, because although I agree with everything Joanne said, including "show up and build trust," part of what I'm calling a little bit into question is whether that master narrative is exactly complete. As much as we have met with skepticism or naysayers, we've also had allies and enthusiasts, even in the earliest days. If you hear, you know, stages of falling in love with palliative care, it makes it sound very sequential and linear, like a Kubler Ross kind of sequence. But it's not actually how I think it played out. I think we have to be a little bit careful about so-called negativity bias, where we really remember the times when we get pushback, or people who were not welcoming of us. And we tend to forget, although we're very grateful for the times, where: "Oh, my, I'm so glad you're showing up. This is exactly what this family needs, what this patient needs." Where even the family, within a minute of explaining what we do, said, "Why don't we meet you a year ago?" And we've gotten that from day one. So it's always been a bit of a hit-and-miss type of scenario. There are times where things go remarkably well, and there are times when there's resistance. And I don't find that surprising. I think it would be more surprising if there was not some degree, intermittently, of resistance or controversy or a little bit of conflict. Because what palliative care ultimately is doing is helping people in really difficult situations. And I don't hold out hope that we'll ever get to the day where there is never some of this. We're all mortal. We're all afraid of being mortal. And lots of other thoughts that go through our minds and fears and anxieties we have are never going to be banned. That's actually what we have to work with. So I think part of the challenge that we face is not so much the overall negativity, but we are walking always into bad situations. Nobody wants to have a child with serious illness. No child wants to have a serious illness. So I think that what we really are up against and have been up against all along-- and it's gonna sound a little bit hokey-- but we're up against, as much as we try to avoid death and dying, we're up against death and dying. They are always going to be intimidating. And because of that, we have to be self-aware enough that that is likely to make us at times tired, have a little bit less internal reserve, and the negative encounters that we have during the day are likely to stick with us more. Which is why we may need things like gratitude practices, not just for self care, but for professional recentering. That overall, I have always, as a palliative care provider been more welcomed into the room than tossed out.

Joanne Wolfe  15:16
What's interesting is, you know, some of these conversations we're having, I'm hearing for the first time what Chris's experience was like. I feel like my career in this field has evolved, from the early days being focused on end-of-life care, to a much more longitudinal approach to supporting children with serious illness and their families. And that also has impacted how we're perceived as a field. So even in our early research, for example, in the very beginning, we used retrospective methods, and asked bereaved parents about the experience they had when their child was facing end of life, and learned from that that there was a lot of opportunity for improvement in communication, symptom management, advanced care planning... all the things that we know now. The early days were focused on end of life, in my experience, right? And so I can understand how the perception of what we were doing was somewhat around, you know, the grim reaper, as I mentioned. And then, as our expertise evolved, and our understanding of how we can be helpful came into play, we figured out that early integration would benefit these children and families and clinicians, no matter what the outcome.

Chris Feudtner  16:44
I think that the box that was drawn around us early on of really, if the patient is not actively dying, palliative care is not needed, or if the patient is not going to die within x period of time, that was very constraining, and also a lost opportunity for doing many things that can help with quality of life. So things have definitely changed. I think, Dan, the way that you had phrased the question is like, given the adversity of everything, who's likely to go into the field? I've yet to meet a person who is interested in palliative care, who doesn't-- and it's going to sound sort of silly-- but doesn't want to help. I think that they are drawn to see a situation that is very difficult, and they want to help. And that is not exactly the same set of motives that I see that draw people into other areas of medicine. They also want to help. I don't think that we should ever lay claim to being the people who have a stronghold on that. But they may be more fascinated with the physiology of a particular organ, or they like doing a certain type of care procedurally. I think that the common denominator of people I get to know in pediatric palliative care is that they were drawn to, when everybody left the room, they wanted to stick around and figure out how to help.

Joanne Wolfe  18:08
That, and serve as the calmest person in the room, holding the distress that everybody else exudes, perhaps. I remember one of our fellows who came to us after the first few weeks of training, he said, "I've never heard in my entire career," and he had had a career in intensive care before he came to us, "how much emphasis you put on diplomacy and politics." And I think I learned early on that we absolutely are diplomats in how we interact with children, families, and other clinicians. And if we're not careful in not being overly dogmatic about what we think is right or wrong, we can really close off opportunities to be involved in the care of these children and families. Having witnessed a lot of other folks try to start programs and see that they were not successful because they came in very heavy-handed about, "this is the way things should be done," we needed to take a different tact. I hope that, I guess, the early lessons that I experienced and my teammates experienced haven't created a culture of being timid in delivering pediatric palliative care, rather, being highly attentive and in-tune, to uncover ways in which to be most helpful.

Chris Feudtner  19:36
We can call it a number of different things: diplomacy, politics... it could also be simply called humility, and relational awareness, that we are stepping into a story, we're the newcomers. And typically even in the illness story, we're stepping in after there's been early attempts to diagnose the problem, to potentially treat the problem. We need to always be aware that there is momentum to it, people have invested in trying to go in a certain direction, there is obviously an awful lot of emotional commitment and feelings. So we need to figure out how to help people as the story is potentially changing under their feet. And they have to start to rewrite it. Or it's done that a while ago, but they have stuck with trying to tell the same story, and we are trying to help them realize that the way that they're telling that story is no longer working for them. Because if we go in there and try to say, "Hey, here's the story, I know it, I have certainty," one, we've committed the problem that we actually rail against, of not having the humility to realize the prognosis is never quite as crystal clear as people might think. We don't have the humility to realize that there are many different values in the world. And lastly, we don't have the humility to realize that we are the latest people on the scene. We're not the center of the story. 

Joanne Wolfe  21:06
I think that's exactly right. And perhaps that's a reflection of the evolution of even how we've labeled what we do, from diplomacy to humility and curiosity.

Sarah Dabagh  21:19
So you've both touched a little bit on the advent of training, right, and the advent of fellowship programs. And I'm hearing two shifts in that: one, which is the shift of people who came to the field and really had to find the field and create it for themselves. And then the advent of people who came from other specialties with experience, to now where there are more people, myself and Dan both included in this category, who went straight from training into palliative care, without stepping through other fields first, and I'm wondering how that shift has felt.

Chris Feudtner  21:55
it has been a shift, definitely, to think of it as a career path. As a general pediatrician, which is what I am, I never did a subspecialty fellowship. You can now have a path potentially mapped out in your mind where you're going to become a palliative care physician. And that was not something that I ever-- I mean, I sort of... that unfolded... it wasn't clear to me that that's actually how it was gonna play out. It was something I was doing, there was not a path I was following. So Sarah, it's a slight alteration of what you're describing. It's not simply "what is the background," although I do think that that alters the way that people experience the subsequent path that they follow. But it's even the notion that there is clearly a path, and it starts to become both facilitated, but potentially a little bit constraining. And when I talk to the fellows, part of what I'm encouraging them is, figure out where you're going to be a little bit of the rebel, you know? Where you're going to take an area that may seem either not that important or it's already been resolved, and you're going to open it up and push it forward. And not just by following the straight and narrow path.

Joanne Wolfe  23:10
I would say that we're continuing to train folks who choose to pursue a career in pediatric palliative care straight from residency, and folks who come to it after other specialty training, or intend to pursue other specialty training. And those are both amazing choices, right? A question that often comes up, for example, we see a lot of folks in pediatric hematology/oncology who consider whether or not to add a year of training pediatric palliative care. And my advice these days is that, because the number of slots for training is still relatively low, I don't think you should pursue added training unless you're going to actually practice as a pediatric palliative care physician. It's not enough to say you want to integrate those skills, in my opinion. As we sort of try-- you know, go through the highly-selective process of trying to recruit fellows to our program, it's not enough to say you want to bring those skills to your already specialty population. Rather, that you want to join the field as a specialist in Hospice and Palliative Medicine.

Chris Feudtner  24:24
If you're not going to make palliative care a very significant part of your practice, as palliative care, not just integrated into what you're already doing, I don't know why one would want to spend a year of one's life doing this. It doesn't need to be 100% in my mind, but if it's not going to be at least 30, 40, 50%, I would hit the pause button. Being a little bit more heretical, I do think that we will need, as a field, to think about alternative pathways to enable mid-career or post-specialty fellowship individuals to get some kind of certification, some alternative route to growing mastery and skills. And that that certification has to have real practical value for that individual. Our workforce issues are dramatically important in terms of not having enough people. And we need to figure out ways to solve that.

Daniel Eison  25:24
I'm curious, actually, now, as we're talking about this, you know, in a very palliative way, none of us have crystal balls, we cannot really prognosticate the future. But are there things that are happening now that you think are changing the conversation, and that in a decade or more people are going to look back and say, "That was a turning point. Palliative care is different now because of this thing that was happening in the early 2020s?" 

Chris Feudtner  25:50
My background is actually in History, so one of the things that I tend to think about are trends that are outside of human intention, but other things that are going on. And the big trend that we see in medicine, it's so obvious that we can miss it is technology. We've had a flurry of technologies in the last 30 years that have allowed life-prolongation, but without cure. And the population of children who thankfully are still with us, and maybe living very high-quality lives, but still have very significant serious illness, that population is growing. And I think that that growth is going to be a mandate to continue to figure out how to provide care for children who are living long-term with serious illness and not going to get better. And then the other big theme that I see is a growing awareness on the implications that this has for families, and for parents, and caregivers. I think in the 1990s, we started to see a growing awareness in a very different end-of-life spectrum in old age of Alzheimers, and the impact it was having on caregivers. Somehow the memo never got passed down that this is also happening to parents of children with very severe illness. I think some of the news coverage that is starting to come out about the nursing crisis in home nursing, and what families are enduring, for want of a better word, because of the lack of resources is another pivot point. So those are the two themes, circa 2021: technology and the impact it's having on families.

Joanne Wolfe  27:39
I couldn't agree more with Chris. I would like to see greater partnership at an institutional level, how palliative care integrates into the advancement of these technologies and the application of these technologies. The next phase of growth of our field, we have to be at the table at an institutional level. We can't simply be kind of programs, or even divisions, that are distinct and separate. Rather, our influence has to start much higher up and in partnership with scientific and technological advancement. So that as we apply these amazing opportunities for children and their families, there's a very holistic approach that addresses all the needs of the child and family, from the life-extension benefit and the quality of life, because we're not in full partnership yet. And that means that we do leave families languishing all too often in this sort of application of this technology.

Sarah Dabagh  28:52
I'm wondering how the advent of concurrent care has played into that. 

Chris Feudtner  28:57
I think we can all vouchsafe that concurrent care has really been very helpful for countless families, countless children, and that it did what we hoped it would do when we proposed it: That it would allow families not to have to confront a dilemma of picking this or that, and be able to say "Yes, and..." And by doing that, they could start to discover the added value that hospice, specifically, would offer them. Very hard, though, to think about this outside of the context of the unfolding debacle that is occurring with home nursing shortages and with difficulties obtaining the kinds of care, coverage for care... I think that the hospice in the US setting. where it's really hospice in the home setting, has to be understood as, what are the other options that are there? And I hope we don't lose concurrent care. I also hope that we can fix the home nursing crisis that we have now.

Joanne Wolfe  30:00
I do think the hospice benefit in general is something that hopefully will evolve. Yes, for certain types of situations it works. But for many, many folks, especially earlier adults, and middle aged adults, it just doesn't fit anymore. And so I think we need an evolution in that paradigm as well.

Chris Feudtner  30:23
Not only longitudinality has increased, but the complexity of the care has increased, and keeping pace with what the skill-level that is required from home nurses to provide that kind of care in a home setting is where we are falling behind. And concurrent care cannot handle that. Hospice care is not meant to be uber-complex medical care.

Joanne Wolfe  30:47
For almost all of our families, they hope that their child lives as long and as well as possible, every day. right? Now, I don't think that paradigm is true just for kids. I would like to think that if I-- and when I, because we all will get diagnosed with a serious illness-- I'm not going to want to just pack it in. I'm going to want to live as long as possible and as well as possible. And that kind of framework has to be embraced by our systems that care for our patients and their families. And that's why the hospice benefit doesn't work because we're, again, especially in the adult world, asking people to choose when folks have blended goals or integrated goals. And it's not an either-or.

Chris Feudtner  31:35
And if you go back in time in the 1980s, when the benefit was formulated, and the main recipients of the benefit were people with advanced cancer, and advanced cancer had absolutely no treatments, and it was relentlessly progressive... You can now live with advanced cancer, with all of your variety of therapies, for years. So again, technology has actually changed the nature of our lived reality. And we're not keeping pace with that fact.

Daniel Eison  32:07
To make explicit what I think you're both saying, and to connect it back to something we were saying before, to all you young palliative care practitioners who are out there listening to this episode-- I hope listening to this episode-- this is one of those frontiers. This is one of those areas where we need to do a lot more work. And as opposed to the field closing down, this needs to be opened up in a really big way.

Joanne Wolfe  32:31
Absolutely. And if anyone thinks that we have solved the problems of pediatric palliative care, and hence there's no need for going into the field, number one, or when you're in the field being complacent, you're wrong. I'm just going to name that. There is so much work to be done.

Chris Feudtner  32:48
If I were coming up now, as a newly-graduating resident, I would see tremendous opportunities in the field of pediatric palliative care to advance in very substantial ways what we are doing. From different types of diagnoses that we actually make, causes of pain, sources of suffering, all the way through to treatment, to thinking about organizational challenges, logistics, the whole nine yards. The field is begging for people to move the ball forward.

Sarah Dabagh  33:23
I think it's a very poignant, and I might even say optimistic, end to our episode.

Chris Feudtner  33:28
That's where we like to finish off, right?

Sarah Dabagh  33:31
Leave room for hope. 

Joanne Wolfe  33:32
Hope and opportunity.

Daniel Eison  33:37
I'm really glad we ended that conversation on such an upbeat and optimistic note.

Sarah Dabagh  33:42
Yeah, I think like Chris and Joanne mentioned about being the newest comers to the story when they go in, it was heartening, as you and me being newcomers to this story, to hear a little bit about how it all started. And I think one of my biggest take-homes is that as the field grows, the room is not getting more crowded, the room is getting bigger.

Daniel Eison  34:02
Well said. I don't think we have to say much else.

Sarah Dabagh  34:05
Thanks for listening. Our theme song is provided by Kevin McLeod. You can follow us on Twitter where our username is @Pedipal. You can find the notes for this podcast and all of our episodes on pedipal.org. If you'd like to submit thoughts, objections, or ideas for future episodes, please reach out via the email on our website. This has been PediPal. We'll see you next month. 

Sarah Dabagh  34:25
All right, great. Yeah, something in there. 

Daniel Eison  34:27
That was fine. Yeah. 

Sarah Dabagh  34:30
That Was Fine: A History of the PediPal Podcast.

Daniel Eison  34:36
PediPal: That was fine.™