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Vicki Jackson on Building the Evidence Base for Palliative Care

Tremendous amount of exciting new data coming out of one of our nation's oldest palliative care services: Massachusetts General Hospital (MGH) just celebrated a 20 year anniversary.  Please see the links below to recent articles and posts, including new studies about early palliative care in bone marrow transplant and early stage GI cancers coming out of MGH.

In today's podcast we interview Vicki Jackson, chief of the palliative care service at Massachusetts General Hospital, the service that provided the palliative care intervention in these trials.  Vicki is known as one of the best palliative care providers in the world.  She also happens to be refreshingly plain spoken.

We talk about many topics, including: how palliative care in bone marrow transplant and GI malignancies is unique, palliative care "pearls" in these populations, what it's like going into a "new" territory for palliative care, and what's next at MGH.

Links to articles and blog posts mentioned:

GeriPal post: How to Incorporate the Results of a New Trial of Palliative Care in Lung and GI Cancers

Effects of Early Integrated Palliative Care in Patients with Lung and GI Cancers: A Randomized Controlled Trial, Temel and colleagues

GeriPal post: Palliative Care is Standard of Care for Stem Cell Transplants

Effect of Inpatient Palliative Care on Quality of Life 2 Weeks After Hematopoietic Stem Cell Transplant, El-Jawahri and colleagues

by: Alex Smith, @AlexSmithMD

GeriPal Podcasts can be found on:

Transcript of the podcast:

Eric: Welcome to the GeriPal Podcast. This is Eric Widera.

Alex: This is Alex Smith.

Eric: Today Alex, we have yet another special guest with us.

Alex: We have Vicki Jackson who is chief of the palliative care division at Massachusetts General Hospital. I had the pleasure of training under Vicki during my palliative care fellowship. She was the fellowship director at that time.

Welcome to the GeriPal Podcast, Vicki.

Vicki: Thank you gentlemen. I'm glad to be here.

Eric: At the start of every podcast, we ask our guests to recommend a song that Alex should play. Do you have a song for Alex?

Vicki: I've been into Iron & Wine and there's a song that I really love. I don't know if you know this one, Alex, but it's called Naked as We Came.

Alex: I learned Naked as We Came. Learned may be a strong word. I learned how to fake Naked as We Came over the last 24 hours.

Vicki: Perfect.

Alex: We will see what happens here. This is a beautiful song, and the words are like poetry, and it's appropriate for palliative care.

Alex plays “Naked as We Came” by Iron and Wine.

Alex: Well, something like that.

Vicki: Samuel Beam would be proud, Alex. He'd be proud.

Eric: Why'd you choose that song?

Vicki: I don't know. I started the indie folk kind of thing and I think that song is really beautiful. It speaks to me about the work that we do, and then also about ... I don't know. How we live life and the impermanence of things and ... I don't know. It just works for me.

Alex: Vicki, transitioning to reason we have you on the podcast today. We wanted to hear about what it's like to be the head, the chief of the palliative care division at a hospital that's involved in so many of these groundbreaking randomized control trial studies.

Recently, and we'll have links to these articles in the podcast as well as Eric's posts about them, you were involved in two major randomized control trials. One; about bone marrow transplant, palliative care and bone marrow transplant. The second was about palliative care for lung and GI malignancies, I believe, early palliative care for advanced malignancies.

I guess the first question off the bat is what's it like going into these areas where palliative care has traditionally not been a part of care, whether ... For whatever reasons. Whether they're not welcome. Whether we're not open to working with them, or whatever. Particularly, with transplant, where there has been such hesitation to involve palliative care early on.

Vicki: Yeah, I think doing these studies overall my experience here is ... I was thinking about this this morning. Part of it is that it's not only amazing work with the patients, but with the oncologist, both the doctors and the nurse practitioners and the nurses, it feels really - especially in solid tumor - a very collaborative relationship and collegial where we're really all on the same page. Part of the pieces, even though it's hard work, we feel that we're doing this and that we're doing a good job for patients, but we're also being engaged and being able to be helpful to our colleagues as well as to patients.

I would say our work ... Our outpatient clinic and palliative care started 15 years ago now. We've had a lot of experience in the solid tumor space. In the transplant world, they certainly referred to us, but the patients who they referred were more likely to be patients with chronic GVH and symptoms in that space. We got experience following patients with them for years.

I would say in the bone marrow transplant space, they would refer when patients were really at a place where they were actively dying and had symptoms that they had a hard time controlling. How this really came to be, and part of what I think we've seen as a major driver of culture change has been really doing the research. Part of this was ... The first study was really understanding what is the symptom profile look like in patients with bone marrow transplant. A lot of the oncologist said, "These patients are fine. They do fine." We found that their symptoms were so severe that sometimes they couldn't fill out the scales that we were really using to measure their symptom burden.

I think showing them what symptoms their patients had, they were really motivated to want to have us engage to try to help with that. The first study we were very mindful culturally was only looking at symptoms. This is not about symptom management. This is not about advanced care planning, or prognostic awareness, or decision making. This is really about symptom management. I would say it's been something where I always say that when we start these relationships with new areas, it's like building a relationship from the ground up. And how do they have these conversations? What did they use to manage symptoms? They can learn from us.

I feel like it's been something where it's this process overtime, but we have really ... It's all in the relationship and us really coming together that we're all trying to do the right thing for patients. The study we're doing right now that we just enrolled our first patient this week is the LEAP study, which is earlier upstream in patients who are just coming in for induction chemotherapy for either relapsed AML or newly diagnosed AML and then setting ... We're really trying to do more communication work and helping with illness understanding and prognostic awareness. Part of what we had to do with them is meet with them and say, "Hey, we're going to support the patients to get through this treatment, but we want them to have a frame and a way to talk about this, because not everybody gets cured."

Alex: Yeah, it does. Eric's got a question, but I have an observation. There's an interesting parallel here between ... We often build our bridges in relationships with patients around symptoms and build that relationship up so that we can have conversations about the more difficult stuff later on. You're saying there's a similar relationship with our referring providers, particularly in new areas like bone marrow transplant, where you first develop relationship around treating their patients with symptoms and then, later, able to move on the goals of care discussions, which are kind of touchy.

Vicki: Oh, absolutely. I think the other thing that we've learned over ... Our palliative care division here just had its 20th anniversary this last month, and I think the number one thing I've learned about how we build relationships in new content areas is you need to start out with something where you all have common ground. A triggered consultation in the heart failure space needs to be with patients who it is a no brainer for them that these patients should see palliative care.

What happens overtime is they see the value. We do a lot of joint visits with our referring provider so they can see what we do and we can learn from them. You see them gradually overtime say, "Well, could you help me with this patient? I know it's not part of the triggered protocol, but that would really be helpful," or, "I had a hard time with this goals of care conversation. Could we do that part together?" I always say it's the stitches and the tapestry and building that relationship and then it expands in a somewhat organic way overtime.

Eric: I think the fastening part for me is you just published two recent studies, one on stem cells transplants, another on GI lung cancers. The GI lung cancer study, there was a lot of crossover as far people in the control usual care group getting palliative care. However, in the stem cell transplant paper, there's really no crossover if I'm remembering correctly. Which it sounds like while you present a data about their symptoms, even during the study, that was not convincing enough to the oncologist that palliative care should be included, should be involved earlier on. Has that changed since the release of the study?

Vicki: I would say what really has changed ... We are much more integrated now on our bone marrow transplant floor. That is absolutely true. Part of it is that the nurses really are interested that we treat symptoms in a way that's different and they felt ... they're more likely to do that.

I'd say the other thing that was really interesting is after we started hanging out with the bone marrow transplant docs and on the leukemia floor, one of the leukemia docs came to me and said, "Would you do a communication training for us?" Another one asked if I would shadow that person seeing patients, because they wanted to improve their skillset.

I think this is so far away from their usual care, that they didn't think about it, and they didn't really believe necessarily that having us involved until we did the study was going to mean that things were going to be better, and they didn't have experienced. They didn't trust that I wasn't going to be a Debbie Downer with these patients and say, "No. There's no way you're going to be cured," when the chance of cure can be 20% to 30% in some of these patients, and that is very real. I think there needed to be ... The proof was in the pudding that they would see that were cheerleaders for these patients and when they didn't achieve remission or they had a relapse, we were there to be in the deep end of the poor with them.

I don't think just giving somebody data is enough, and we know that that's true for multiple studies. It's not enough, and it's about building the relationship, I think, in terms of that kind of integration.

Alex: A question about ... Many of our audience are practicing clinicians. If they wanted to go into the transplant space, is there a particular symptom or symptom pearl that you ... A particular treatment that you found effective or symptom that they should attend to in order to start building that relationship?

Vicki: Yeah, it's a great question. I would say the two things that we did very differently than the way the transplant teams were managing the symptoms, one was really aggressive nausea treatment with the idea of round the clock anticipatory dosing for nausea in those days where we know that the nausea is going to be severe with opportunities for breakthrough antiemetics, I think we use much more Haldol. They did not use Haldol having the Ondansetron or whatever other med of that class scheduled.

The other thing is really mucositis. They would be much less likely, at least here in our population, to use a PCA for those days when the mucositis was really severe. I think their fear was they weren't going to be able to get the patient off the PCA soon enough. In this, they just realized the patients were able to be more engaged, more functional and that there was no problem titrating off the PCA at the appropriate time when the mucositis have resolved.

Eric: One thing that has been coming up a lot in the same time that your stem cell transplant paper was published, there was a meta analysis on palliative care in general about the effectiveness. It made me think, what would the community, the palliative care community's reaction be to your study, the stem cell study, if it was negative? Would we have said, "Oh, you know what? That's not palliative care, 'cause all they did was address symptoms and all the other components of what we do in palliative care was not a focus of this study." It did sound like you had some leeway to address it if you wanted to, but it wasn't the primary goal of the intervention.

Vicki: I get that. I would say though that we started out dealing with symptoms, but a lot of what we did ... One of the pieces of that work that I'm most proud of is the fact that the rates of PTSD were so much lower patients who were in the intervention group. We did a lot of work helping them understand what to expect with their symptoms, how to best cope with that, how to make sense of - how to deal with the anxiety around whether they're going to -what that bone marrow biopsy is going to show. All of those things.

There were certainly a psychosocial component. There was a not an advanced care planning component. There was only a helping patients cultivate their illness understanding and prognostic awareness when patients really got sicker. Unlike in the solid tumor in all of our work, all of those domains are really part of the intervention from the very beginning. In this patient population, when they are sick, it's not the idea that I would be walking in there and saying, "What's going to happen if you're not in that 30%?” If they didn't bring it up, it just wasn't appropriate.

It was not only ... We focused primarily on symptoms, but we did a lot of referral to psychosocial clinicians. We did a lot of help with coping and adopting and managing going through that whole process and helping them compartmentalize a lot of the concerns that they had about what was going to happen with the treatment.

Alex: Briefly, as we're coming to the end here, any pearls or thoughts for people wanting to move into early GI, early palliative care for GI malignancies?

Vicki: I think the take home from that paper, guys, is really that we need to be very careful with assuming that the intervention we use in one cancer population is going to make sense in the same timeframe for another cancer population.

I think what was very interesting about that, if you looked at the quality of life curves, the depression anxiety curves, they were very distinct between those two groups. My sense is I really do believe if we had been following the GI cancer patients 24, 36 weeks out, that those curves would be distinct. I think part of what happens in GI cancers is that they are so symptomatic and, often, when they respond to chemotherapy really improves things. I think the current first line chemotherapy for patients with pancreatic cancer can be really effective, and we have to understand what are the big things that I really talk about when people are trying integrate a co-management model in oncology is you have know your oncology. You have to know what first line chemotherapy looks like in this patient population. You have to understand and know how these patients run off the rails, they get biliary obstructions, they get gastric outlet obstructions. You have to know all of that medicine and oncology incredibly well to be able to interface.

I do think it's humbling from a research perspective that I very much worry about studies where it's all-comers with metastatic disease and all different kinds of treatment, because I think it's really ... It's hard to interpret that data.

Eric: Do we need a palliative care study for every disease, every type of cancer, heart failure, COPD, ALS, Alzheimer's versus Parkinson's, dementia?

Vicki: Yeah, I do think that we should not assume that we lump in and our intervention is going to be the same in all these patient populations, because their illness trajectory is different. I think we saw that very clearly in this followup early intervention study.

We try really hard here when we're moving into a new area to have the first study be to really understand what the illness trajectory looks like for these patients so we can adapt our interventions and think about them differently.

Eric: I got another question then. Especially as new novel cancer targeted therapies are coming up that it's really game changers in, let's say, lung cancer and what it looks like. What does that mean for palliative care? What does it mean for past studies done on these patients?

Vicki: It absolutely changes the landscape. I think that there are ways in which ... MGH really sees themselves at the forefront of targeted therapies in immunotherapies, in melanoma, in lung cancer, so we deal with this all the time. There are ways in which these patients who have targetable mutations behave much more in terms of their illness trajectory and their illness understanding and prognostic awareness to an AML patient. A patient who has got a 30% chance of cure, there are ways that these patients have a long term survival that is really real.

We have to know that and understand it, and if the oncologist says, "Vic, I've got a new targeted therapy that I think is going to work for this patient." I think about that very differently than them starting a 5th line chemotherapy on a patient with lunch cancer, where I think the likelihood is benefit is very small.

The other thing that I really have to say I'm quite concerned about, with both the immunotherapy and the targeted therapies, is that I feel that what we're seeing in practice is patients have a terrific quality of life, much better than before for a long period of time. I am quite worried that that last six months of people's lives can be worse. Part of it is, is what we're seeing here is a horrible bony disease burden. There's a way in which this must be a sanctuary site in some patients and these medications are not effective. We have had pain doing much more lidocaine, ketamine, and we've done culdotomies more than we have before for patients who have no visceral disease. They're not going to die anytime soon, but they have such a horrible symptom burden. It is harder to prognosticate. We've got to really understand what our oncologist think can happen and how these drugs can be helpful. It's absolutely change, at least, the way our team thinks about symptom management, because it can be much harder than it was before.

Eric: It also sounds like we need a little bit more research what the end of life looks like for these individuals.

Vicki: Exactly. I keep pushing our groups here to really try to help us articulate it because, clearly, there's a referral bias for me. I'm going to be seeing only the patients – you know, I'm going to be having a larger population of patients on targeted therapies who have horrible symptoms to control.

I will say there feels like a very qualitative difference that we all notice in terms of acuity. Also, I think the patients coping in illness understanding, because when you've been taking a pill everyday for six years and then you fall off the rails and you really go off the cliff as a patient, it's a very different place how we need to intervene and how we've helped them in those six years before things really get tough.

Eric: Right. Vicky, we really want to say thank you for joining us on our podcast and for your time and expertise.

Alex: Yeah. Sad we didn't get a chance to talk about BJ, palliative care rockstar, your quotes about him in the New York Times, which just so captured Vicky Jackson as well as capturing BJ. I couldn't say those things you said.

Vicki: I know. I don't know that I should have said those things I said, but it is what it is. Yes.

Alex: No, those are great. We loved it.

Vicki: It was a pleasure to talk with you guys and I'm happy to come back any old time.

Eric: Alex, do you want to end this off with another verse?

Alex: Sure thing.

Alex plays “Naked as We Came” by Iron and Wine.

Transcript edited by: Sean Lang-Brown


Michael said…
It is an everchanging landscape for people with cancer and all of us that wish to be of service. Whether oncology or palliative care is your specialty, we are all called to learn and collaborate with renewed mutual curiosity. Thank you Vicki, Eric, and Alex for shining a light.

The Iron and Wine selection sends me to my favorite, "Such Great Heights"! I'll let you all decide if it is relevant to the conversation: