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Ep. 126 - LiveWell Talk On.. Palliative Care (Dr. James Bell)

episode 126

Ep. 126 - LiveWell Talk On...Palliative Care

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Host: Dr. Dustin Arnold, chief medical officer, UnityPoint Health - St. Luke's Hospital

Guest: Dr. James Bellmedical director, St. Luke's Palliative Care

Dr. Arnold:
This is LiveWell Talk on palliative care. I'm Dr. Dustin Arnold, chief medical officer at UnityPoint Health - St. Luke's Hospital. Joining me today is Dr. James Bell, medical director of St. Luke's Palliative Care to discuss what palliative care is, the service they provide, and more. Dr. Bell, welcome to your first podcast.

Dr. Bell:
Thank you very much. I appreciate you inviting me.

Dr. Arnold:
Or at least the first time you've been on this podcast. Have you done other podcasts?

Dr. Bell:
I'm probably a podcast neophyte. We do things here and there, kind of in the multimedia area. But I can't remember if I've been on a podcast before.

Dr. Arnold:
Okay. One of my daughters was asked one time, do you listen your dad's podcast? She said, well, half of them. And they're like, wow, half of them. And she goes, well, half of one of them. You know, so no respect at home. You know, I wanted to talk about palliative care. I think that it's a really, not exploded, but expanded in the last 10 years. I think in my opinion, I think it is even become more important with the, and it kind of grew at the same time as hospitalist programs. Because you're taking that primary care physician that's known the patient for a long time out of the care plan, but could you give me how you would define palliative care?

Dr. Bell:
Sure. There's a couple interesting things that you said there and kind of historically sort of a pathway to where we are now. Palliative care, if I were to kind of describe this simply to people, is you think of cardiology as heart care. You think of pulmonology as lung care and you think of palliative care as quality of life care. So the reason that palliative care really exists is because as you very well pointed out, things are different now than they were a generation ago. Things that bring the end of life potentially into view for people are more complicated. And they're different than they were when you and I trained in medical school. People then died fairly suddenly of heart attacks or diseases that we really couldn't fix, or bad strokes, or cancer that just ended a life. And now we've really managed a lot of those things very well. But what we have is a situation where a huge number of patients, a big segment of our population, is living with a lot of chronic and potentially serious medical illnesses. So we take care of people who have cancer and they're actively fighting that and have heart disease, and there's a lot of things that they can do about that. And they maybe have bad lungs and they're under very aggressive treatment for that. A lot of patients who are struggling with cognitive issues like dementia, and maybe even on top of all of those other things. And so what that brings into view is a complicated situation, where decisions that you're making about healthcare are very challenging and we don't, haven't historically tended to do a very good job of thinking about those things in a quality of life filter. So that's what we do in palliative care.

Our focus, like a cardiologist has a heart catheterization, our procedure is a family meeting. And so we sit and talk with patients and their families, typically in the hospital when we meet them for an hour, about the choices that are in front of them and thinking about things in a quality of life way. Not that there's a right or wrong answer, but about what those choices might look like. So a lot of people are afraid that when we come in, we're the big gloomy black cloud and that we're here to make them give up, or that we're here to be negative or shorten their time. It's not about that at all. Many of our patients in palliative care live years and years and years, and fight disease and do very well and they're comfortable and they're living a good way in the last part of their lives. So it's really more thinking about how to live with the possibility that things could bring the end of life into view. So I hope that makes sense.

Dr. Arnold:
I hadn't ever looked at it that way, but that's a great perspective to take. Because when I started medical school, 50% of heart disease presented as sudden death, and if you had LV dysfunction or congestive heart failure, you're going to be dead within 10 years. And that, I mean, that has changed dramatically for the better. But now you have patients with chronic illnesses, chronic conditions, that can be kind of indolent in their decline, but a decline nonetheless. I know that was a great description. Now, you talked about quality of life and it's easy for one to understand that my quality might be different than somebody else's. How do you navigate that?

Dr. Bell:
Yup. Great question. So again, I think that's where some of the sort of specialization and training and palliative care comes into play because it's really, and this isn't rocket science, but we really don't all do a good job of listening well and understanding well. And so sometimes it's the right way to ask a question. Sometimes it's literally, which is really hard for a doctor, to just be quiet and understand what people are thinking. So again, when we think about things in a quality of life sort of a way, we all come with our own sort of ideas and our own preconceived notions about what's right, and what is good quality, and what is maybe our best sort of idea. And sometimes we do need to give that. And again, that's something that we tend to kind of shrink back from at times. And especially again, in this sort of highly intensive intervention oriented medical system, where we just do things to people because we can. Sometimes it's easier to do something than it is to sit down and talk for a while about whether that's the right thing to do. So getting to that place where you can really connect with people in that quality of life conversation and let them be really the driver, can sometimes be very, very challenging. Sometimes it's not, but sometimes it can be.

Dr. Arnold:
You know, when people ask me: well, what's wrong with the healthcare system in the United States? I always say, well, the problem is we do really great things and we're all showing up to work everyday thinking if we do more of what we do, things will be better. And that's not necessarily the case. They do really great things with prostate cancer. That doesn't mean we do it to everyone. And because you know, a directive we all carry close to our heart is patient autonomy. Everybody's different. And that's what makes the job fun though, too. I mean, if everybody was the same, it really wouldn't be that much fun. Sometimes they call it, haven't heard this in long time, but hospice, confusing that with palliative care. Tell me the difference between hospice and palliative care.

Dr. Bell:
So one of the things you said early on again, that I'll key off of is sort of, so how did, where did palliative care come from and how did we get where we are? Hospice came into being in America in around 1981 or 1982, that was when they created the hospice Medicare benefit. And here in the United States, that really is a box that is bound by two rules. One rule is, we think that with the natural course of an illness, that somebody is in the last six months of their life. And the second rule is that their goal is no longer to try to do things purely to live longer, but it is to be comfortable. So if a patient fulfills those two criteria, then they can have hospice care. That's an entitlement. It's something that Medicare pays for all of the people and the medicine and the equipment for good end of life care. What we unfortunately did there is not only put people inside that box, but keep a lot of people outside that box. Because when you're thinking about just doing that, it's very difficult to have that conversation that we were talking about, about quality of life when there are things that you conceivably could do, but in order to have hospice, you have to let go of. So in around 2000 or 2001, some people from the Robert Wood Johnson foundation actually came up with the concept of getting outside of that box and saying, hey, how about if we took care of people in a different sort of a way with concepts and philosophy that was maybe a little bit more consistent with comfort focused care, or care that is dealing with that quality of life centerpiece. But not make them give up chemotherapy, not make them decide that they couldn't do something to make their heartbeat longer. And at the same time, make sure that they're comfortable. So that's where palliative care came from. And at St. Luke's, we started our program. I went to a meeting in 2001 about that. And then we started our program in 2005, and it's grown steadily ever since then. You said one more thing that I kind of want to, before it's out of my head, to pass along. That is, so I'm a family doctor by training and I spent 21 years in full-time family practice in Marion. And sometimes I tell people in the hospital when I meet them for palliative care, that I'm kind of the stealth family doctor in the hospital, because it really is thinking about things that way. And 80% of palliative care frankly, can, and probably shouldn't be done by a good family doctor who has that skillset. So it's like a lot of other things in medicine, your family doctor can do about 80% of what needs to be done. And as I said before, this isn't rocket science, but it is sometimes very challenging to put together that idea of good generalist, primary family doctor care in this incredibly complicated hospital setting.

Dr. Arnold:
Well, I think maybe we can start calling you ninja doctor.

Dr. Bell:
You can call me whatever you want. I answer to, I've been called a lot worse than that already today.

Dr. Arnold:
Oh, okay. Well that's, and it's only two o'clock in the afternoon.

Dr. Bell:
That's right.

Dr. Arnold:
You know, that's interesting how you describe it because, you know, you said 2005 and the hospital's program started in the spring of 2006, and then you started to have primary care physicians, family practice specifically, but also internal medicine, stop coming to the hospital over time. And so you lose that continuity, and I've always found that the palliative care service, one of the best things that happens, because I work as a hospitalist, is the continuity. You see your patients, they come back. And so there's a common, you know, it's nice to whether someone says, no, they're not usually this confused. And it just, it really does add to the treatment plan. And it's so easy to get lost in the trees in the forest these days, there's so much going on. And it really is an additive. Now, it's a board certification, correct? And there are fellowship opportunities. And I know that you're prior to that era, but tell us about that.

Dr. Bell:
Yeah. So palliative care and hospice together combined are actually the newest specialty under the AVMS, the American Board of Medical Specialties that there is. You have to be board certified with a parent board. And I think there are 11 or 12. So there's more parent boards for palliative medicine than there are any other sub specialty. But you can be a general surgeon or a pediatrician, or even a, you know, emergency room doctor, anesthesiologist. The bulk of palliative care certified, board certified, doctors are family medicine or general internal medicine or internal medicine sub-specialties. So they actually again, sort of, birthing out of hospice when palliative medicine came into its own, they developed their own sub specialties certification examination in the late 1990s and up until the early 2000s. And I got that board certification. But then, I think it was in 2004 or so, the AVMS took palliative medicine said, now you're going to be a bonafide subspecialty. And then there was a grandfathering period where you could be board certified in palliative medicine without doing a fellowship, if you had certain experience and then pass the exam. And now you have to do a fellowship to actually have board certification for palliative medicine. It's a one-year fellowship. And we were actually part of the fellowship that was out of the University of Iowa for a number of years because they didn't have a board certified hospice, or a Medicare certified hospice in Iowa city, but now they do. And interestingly again, for historical purposes only, Mason City Iowa had the very first community-based palliative care fellowship in the country. And they did a good job up there.

Dr. Arnold:
Oh really? That's always been a very strong family practice residency. Really, they're kind of, they're in that situation where they're just far enough away from everything. They have a pretty solid medical community. I've always thought. I've got friends that practice up there. You mentioned grandfathering, how many grandkids do you have now?

Dr. Bell:
Ten, thank you for asking.

Dr. Arnold:
I thought it was double digits. Four daughters, right?

Dr. Bell:
I have four daughters.

Dr. Arnold:
Two daughters was plenty for me. How can a patient, if I'm admitted the hospital, I'm a patient and can I request palliative care?

Dr. Bell:
We get more patient requests for palliative care with increasing awareness of it and people who have experienced it. We still, just on the basis of etiquette, require a physician referral or consultation. So that's both inpatient and outpatient. I don't think we really talked about that very much yet. So that connectivity and continuity that you mentioned, we, when it's appropriate follow patients outside the hospital. Our outpatient census right now is around 190. Brook Sternberg, our nurse practitioner and Renee Grummer-Miller, our social worker are the foundation of our outpatient program. About half of those 190 patients are people with stage four cancer. So they pretty much live a lot of their day at the PCI oncology office. But to get back to answer your question, we do require a consult from a physician. So if a patient wants palliative care, they just need to ask one of their doctors, preferably their primary care doctor, or if it's in the hospital somebody.

Dr. Arnold:
Yeah. Well, and I think, I think the medical staff has evolved to being receptive of it. It wasn't always that way. And with a lot of things, change is not always welcomed. You can resist change and become less relevant or you can change with the times so to speak. Well, one last question we always ask our guests, why did you choose palliative care? Why did you make that transition from a very successful practice in Marion with Dr. Hodge to palliative care?

Dr. Bell:
So I'm asked that question periodically, and what I usually say is that it found me, I didn't find it. My very first clinical experience in medical school, and I won't name the year, but it was 1980. I went to Haiti to spend a month in a home for the dying, with no intention of necessarily that becoming a driver for me of the kind of care that I would provide. But those life experiences, both clinically and personally really again, sort of led me to honestly, a love of taking good care of people in the last part of their life. And again, if you look at American medicine, it's not something that we've done very well. It's not, it's not gloomy big black cloud, lightning strikes medical care. It's actually floating the boat higher and kind of raising the bar and the standard of how to take good care of people in the last part of their life. So I did that through medical school and residency, and then became the hospice medical director for St. Luke's from 1989 until 2018. So I did that for almost 30 years. And then again, as I sort of described for you, palliative care was sort of born out of that. And I moved along and I loved every minute of my family medicine practice, I would do every single day of it again. And in 2007, as you remember, I was also in the medical staff leadership track here, it became really clear to me that there were not enough hours in the day for me to keep doing full-time family medicine and the burgeoning sort of palliative care practice and hospice at that point in time. So I actually approached St Luke's with kind of a proposal and a plan. And the hospital was extremely gracious, kind of in helping and allowing us to create that. So we really did sort of create something that wasn't here before. And I am humbled and at the same time, you know, proud that we were able to do that. And it's been the hard work of a lot of people. But that's sort of how my universe got to where it is right now.

Dr. Arnold:
Yeah. I think credit to Mary Ann Osborn for having the vision, not only with palliative care, but also with hospitalist programs, to see on the horizon and have confidence in those human needs that we could actually fulfill that vision.

Dr. Bell:
You with the hospitalist team. And I mean, so what a legacy and what a truly necessary thing it is. I mean, now people, you know, nobody could live without hospitalist medicine, and I kind of hear the same thing about palliative care.

Dr. Arnold:
I think they have been two parallel processes. Well, Dr. Bell, thank you so much. This is great information. Always fun to talk to a colleague. Once again, this Dr. James Bell, medical director of St. Luke's Palliative Care. For more information, visit UnityPoint.org/palliative care. Thank you for listening to LiveWell Talk On. If you enjoyed this episode, don't forget to subscribe. And if you want to spread the word, please give us a five-star review and tell your family, friends, neighbors, strangers about our podcast. We're available on Apple Podcast, Spotify, Pandora, or wherever you get your podcasts. Until next time, be well.