Eric: Welcome to the GeriPal podcast. This is Eric Widera.
Alex: This is Alex Smith.
Eric: And Alex, we’ve got a couple of people in our live studio audience and a very special guest with us today.
Alex: We do.
Eric: Should we start off with the live studio audience?
Alex: Let’s start with the live studio audience.
Eric: Would you guys mind introducing yourselves?
Emily: My name is Emily Taplin. I’m a social worker with a palliative care team here at the VA.
Anne Kelly: And I’m Anne Kelly, also a palliative social worker here at the VA.
Eric: And Alex, who is our special guest with us?
Alex: Terrific. This year … This year? This podcast we have Arden O’Donnell who’s a licensed clinical social worker, palliative care social worker at the Brigham and Women’s hospital in Boston. Welcome to the GeriPal podcast Arden.
Arden: Thank you so much. Happy to be here.
Eric: I sense a theme. We’ve got a couple of social workers in this audience. But before we actually talk about why everybody’s here and the article that you published Arden, maybe we always start off with a request from our guest as far as a song for Alex to sing. Do you have one for Alex?
Arden: I do. I chose, I’m originally from Texas so I thought I might as well go with the country theme and I chose the song “Live Like You Were Dying” by Tim McGraw. Actually because that it reminds me of one of the patients that was in this study.
Alex: I’m just going to do the chorus to start and more at the end. [Singing]
Arden: Wow. That was great.
Alex: That’s great. We don’t get enough country requests. I love a little country.
Eric: We’re going to be talking about your article that was published in JAMA Cardiology titled “Social Worker Aided Palliative Care Intervention in High Risk Patients with Heart Failure.” A link to the article will be published on the GeriPal website for audience members who want to read it. Maybe before we talk about the actual article, what got you interested in palliative care for heart failure, heart failure patients in general?
Arden: Well, I was the social worker on the consult service at Brigham and Women’s hospital and was for about just over five years. During that time, we originally had started doing most of the work in oncology. As I was there, my predecessor and coworker, Phil Higgins, who is also a social worker had started making inroads into cardiology. I think we know that cardiology was a little slow to take up palliative care.
We began getting these consults and it turned out that many times both teams sort of weren’t sure what they were wanting and there ended up being a lot of requests for social work only consults. My team, my clinical team was sort of saying I don’t know what to do over there. What am I going to do? I think they were very focused on helping the symptoms and the truth is in cardiology, a lot of the symptoms are a result of the heart failure. The cardiologists feel confident in being able to really have conversations, I mean be able to help with the symptoms. So, what they really were hoping for was help to sort of begin these conversations around what did the patients want, their goals and wishes. It seemed like a really good fit for social work. As I got closer and closer to that team and spent more time over there, then I really felt like that it was worth thinking about the role of the social worker as a leader on the cardiology team and as a big part of it.
Alex: Just to reiterate, it sounds like the palliative care team was comprised of many different folks. They had physicians, maybe nurses, social workers and the heart failure folks felt like they were doing fine managing the symptoms. They wanted primarily conversations around goals of care and conveying prognostic information. Does that sound right?
Arden: Yes. And in complex situations there certainly were patients that had complex symptoms or complex needs around advanced care planning or thoughts that there certainly were situations that they needed a doctor or a nurse practitioner with those skills but many times the facilitated conversations in understanding those where it was and the clinical work of social work was what they really were leaning on the most.
Eric: That sounds like what you did in this trial is really a social work led palliative care intervention in these heart failure patients. Can you briefly describe kind of what you did in this randomized control trial?
Arden: Sure. What we were trying to do is really trying to think about is there a model that we can use that would be more cost effective? Are there new models that will work in different populations? The reason why we named it swap was sort of like saying could we swap out a social worker for what has been traditionally the randomized control trial setup of a palliative care intervention done very well but in many of the beginning trials, there was a doctor, a nurse, a chaplain, maybe there was a social worker, most of the time there wasn’t a dedicated social worker. And, it was this entire team that did the intervention. We were sort of looking at this saying what do we do? How do we embed a social worker? Could we possibly embed a social worker that’s trained in palliative care to facilitate some of these conversations.
Basically, what we did was the patients were consented within the hospital. They answered a series of questionnaires and then when they were discharged two weeks later, they had a visit with a palliative care trained social worker who had a goals of care conversation based on the serious illness checklist project, the six questions put out by Susan Block and Atul Gawande which is very incorporated into the Brigham and had these conversations with the patient and either in that visit or the next visit, the social worker wrote up the conversation had, passed it to the cardiology team and then helped make sure that conversation got conveyed, usually through a joint visit with the palliative care social worker, go in with the doctor, the cardiologist and the patient and sort of reiterate the goals of care and so then looked at that and the effect of that. There were some really great results from that.
Eric: Before we get into the results, just to breakdown what actually happened. You had a high risk population of patients who were hospitalized and had to meet certain additional risk, what’s the right word?
Anne Kelly: Factors.
Eric: Risk factors, thank you very much. Including prior hospitalization last year, age greater than 80, chronic kidney disease, low blood pressure, low serum sodium, cardiogenic shock or serious non cardiovascular illness like advanced cancer, COPD. They were discharged. Then they followed up with either a palliative care social worker, was that prior to discharge or was that after discharge?
Arden: A social worker, either the inpatient social worker or myself provided the consent but we just gave an overview of the study and there were randomized after that. So they did have contact with someone but the first real conversation that happened in many cases was at discharge in the outpatient clinic.
Emily: Arden, in that follow up meeting on an outpatient basis, what were the six questions that you asked?
Arden: What I did was that we followed the Serious Illness Conversation Guide and it starts out by just asking the patient sort of understanding their preferences so what’s your understanding of where you are with your illness now, you know that’s sort of the typical question that’s asked to patients. The one that I really focused on in that was how much information about what lies ahead would you like to know.
I did this a lot in sort of saying as your healthcare provider, as your social worker, what kind of information do you want? Do you like a lot, do you like a little? That began this conversation and I really framed it as a healthcare provider, we need to know what is important to you and I need to make sure that it’s documented in this chart. Not only do I want your doctor to see it but I want you to really know this.
Then the second question is actually around sharing prognosis. I think that in this particular guide, this is what they really feel like is the linchpin of sharing prognosis. And I think that’s a problem for social workers because pretty clearly we’re not going to share prognosis directly. That’s not our job, we’re not going to. But what I will say is I was able to begin a conversation about prognosis. I could say something like I know you were just hospitalized. It looks like you’ve been hospitalized three times this last year. What does that mean to you? Or they’ll say or how many times were you hospitalized in the year before? They’ll say well just once but now it seems like I’m going more and I’ll say gosh, that seems like that maybe you’re getting sicker. Do you feel like you’re getting sicker?
Although I didn’t have to have, I wasn’t breaking bad news and as a social worker, I’m not taking away hope, I’m just offering a question around sort of a softball of a prognostic question. Then, I sort of explored key topics around their fears and worries. What are their worries about their future health? What are the fears? What gives you strength when you think about this illness. You’re gathering some of the goals and the things that are important to them. Then you can build it on and say if you got sicker, have you ever thought about how much you would be willing to go through or have you talked to your family about what you would want if you got sicker?
Depending on what the patient said, we went from there. But what I would say is in most cases, these patients were saying things like I would want to know everything. I would want to be able to have a conversation with my doctor. I haven’t had a conversation with my doctor or I would want my family to know. I sort of feel like that each of those questions, they were sort of falling into, it was really what do you understand, how much information do you want to know, sharing a little bit of the prognosis and then asking what their important goals were, what their fears and worries were, what strengths when they think about the future beginning conversations about are there any limitations that you wouldn’t want if you got sicker? How much are you willing to go through and then how much does your family know? Would you like us to have a conversation if you had a conversation with this, would this be important about this, would it be important to have your family there.
Anne Kelly: It’s really interesting to think about how to engage in these conversations within a social worker’s scope of practice. I’m curious, when you explored patients’ understanding of prognosis in those interviews, what did you discover?
Arden: What I will tell you is that in our initial questionnaire and I think that this is a piece about this study that’s important and an interesting piece is in our initial questionnaire packet we did the typical depression, anxiety symptom management. We had five questions that were patient’s preferences and one of those questions was how long do you believe you’re likely to live from now. They had to circle what they thought. One was it went from like less than six months, six months to a year, one to three years, five to ten years, ten to twenty years, longer than twenty years. That was one question that we asked. And then we asked them have you ever talked to your physician about how long you were likely to live. Would you want to, yes or no, would you want to. If you have, were you happy and if you haven’t, would you want to. Then we changed the surprise question and asked it to the patients. We said if your doctors were concerned that you were likely to die in the next year, would you want them to tell you. And the answer was they could circle yes, no, or I’m not sure.
What I will tell you is, even though I didn’t expect this questionnaire to become a little bit of an intervention in and of itself, I think it did because many times as I dug into these questions, I was able to refer back to this. I was able to say the surprise question like around prognosis, what do you understand if your doctor thought he wouldn’t be surprised if you died in the next year, would you want your doctor to say that. They said oh yeah, you asked that on the questionnaire.
I wasn’t asking it out of the blue. I want to be honest about that. It had been on this questionnaire but that’s where we really got into that conversation around prognosis because many times they would say yes I would want them to talk and of course they would, they’re my doctor. Of course, they would tell me that. What I thought is as a social worker, that is probably not true. You actually probably have to ask that directly if you want that answer. Doctors don’t like prognosticating so we understand that but that was a really interesting one. That really got to the key of some of the prognostic questions.
Alex: That’s terrific.
Eric: To the point of doctors don’t like prognosticating, was it half of patients the cardiologist didn’t have a discussion about prognosis with their patients despite 40% were dead at six months?
Arden: Yeah. That was the piece that I think is the most interesting. I will tell you, on that first questionnaire when we asked them how long they thought they had to live, 82% thought they had a lifespan greater than five years and 40% of them, we had a 40% death rate and that was within three months. The death rate within a year was about 65%.
Arden: That’s just a huge, huge discrepancy of where they thought they were versus what they were and in 67% of the patient population, the doctors checked off I would not be surprised if this patient died in the next year. We asked the doctors the surprise question also. They were hitting at they thought 67% of this they wouldn’t have been surprised and that’s about how many we lost in a year.
Emily: I just have a clarifying question about the process. Was the questionnaire something that you filled out together with the patient in this visit or were they filling it out beforehand and they sort of had their answers as a guide as you entered the interview. How did that work?
Arden: They filled it out beforehand. Many times I didn’t necessarily look at their answers, it was just the fact that it was asked so when I said it, they responded like it was on that questionnaire. I didn’t have their questionnaire in front of me but I was able to say I know you filled out the questionnaire because everyone filled out the questionnaire. And some people wrote I don’t know, I don’t care. I let them revisit what they thought but I didn’t have the questionnaire with me. I did have the additional leverage that I knew that question had already been asked.
Alex: Ok so Arden, you talked about the intervention, it looks like you randomized 50 people, split approximately evenly between the usual care and the intervention and then you looked at outcomes at six months. Tell us what you found?
Arden: What we found was that at six months, 65% of the patients had any documentation that was documentation of their goals of care in the medical chart. It was 65% in the intervention group and 33% in the control group. What I will say is that for each patient that the social worker saw in the intervention group, there was a full documentation of their goals of care but we didn’t count that. So 100% of the patients who the social workers spoke to had something in the chart. But we were really looking at non study staff. Did the conversation I had that was either emailed to them or placed in the chart subsequently influence another conversation that was documented by a clinical like the cardiologist or the nurse practitioner. In 65% of the cases, that was the case. Maybe this changes the conversation and in 33% of the control group.
Alex: Hold on. Let me just clarify that part. As part of the intervention, you documented the advanced care planning and then emailed that to the clinical team, the heart failure clinical team taking care of the patient. Is that correct?
Alex: Got it. The intervention sounds like almost has three components so far. There’s a questionnaire which almost serves as a prompt list. There’s the visits, an average of the two by the palliative care social worker, and then there’s an emailing of information about that visit to the heart failure team.
Arden: It was the summary, I would have, the social worker would have documented the answers to the serious illness checklist in the chart and then I would also email that to the team to ensure that they read it.
Alex: Got it. Great. Okay. Go ahead. You were going to talk about the other outcomes.
Arden: Then, 58% when we looked at MOLSTs comfort care forms or discharge to hospice there was a difference, 58% of the patients actually had that that were in the intervention group in comparison to 20% that were in the control group. I think that the most significant one especially when I think about social workers in general was this improved prognostic alignment. What we found was when we looked at the questions that we asked at the beginning of how long do you think you had to live and those patients circled one of those categories, we asked that again at the end of the study. What we found was that 94% of the patients within the intervention group moved at least one category toward what was a more realistic prediction of their prognosis as opposed to 26% in the control group.
Alex: That is fascinating. That is absolutely fascinating particularly since you just told us that as a social worker, you didn’t feel like it was your role to disclose a prognostic estimate. You sort of asked questions around it but didn’t directly offer prognostic information to these patients. Is that right?
Alex: So what happened here? How did their prognostic understanding come to greater alignment with clinical understanding?
Arden: I think that’s the piece and we always think about, and maybe the social workers that are there in the studio can also speak to this, but I always have this question, as a palliative care social worker, what is our value added? Every team loves us. Everyone can say they love us but we don’t really have this idea of what do we do. I really feel like social workers help patients deepen their understanding of their illness and their prognosis. And there are lots of ways that we do that.
We can witness conversations, we can repeat back to patients what doctors have said versus what patients hear, we can ask questions about it. But what I feel like is that they were able to have a conversation with me. I was able to ask some curiosity questions, delve into it, and then when I saw a place where there was a massive disconnect such as I think I have ten years to live and my doctor thinks I have less than one, I say to the doctor they think they have ten years to live and you’re telling me you’re not surprised if they die in the next year. I was able to say, can we have a conversation about this.
I was able to prepare the patient for the joint meeting with the doctor and then I was able to summarize and say, hi, Dr. Desai, Mr. Jones here really wants to understand his prognosis. He has been saying he really wants to get all the information possible. He feels like that he may have another ten years to live but really would want to know if you didn’t think that was the case. Then the cardiologist can say, actually, you’ve been doing well in the last whatever, how ever months, but, you’ve been getting sicker so what are the things that are important? I can say, well it sounds like he really wants to go see his family if he only had a short time left. Then the doctor can say well, I think that would be a really great thing to do this summer.
Then there’s, I think that even if the doctors weren’t saying I think you have days to weeks or weeks to months, this prognostic conversation sort of was really rooted in their goals and values and what was important to them so they were able to really understand I have a shorter time than I thought I did. For me, I feel like as a social worker then they can plan, then they can do the things they want to do. Then they can make those decisions, then their family can be prepared.
Emily: I’m really curious when you shared this information with the other providers on the team, your non-social work colleagues, what was the feedback you got from them around their perceptions of the conversations you were having with patients and their role in being able to follow up on those conversations?
Arden: I got such positive feedback and lots and lots of thank you so much. Not from everyone ok, not from every single person but thank you so much for having this conversation. I didn’t know this. This will help me be able to have a better conversation or Arden, do you think you can come in with me for this conversation. I don’t know if I can just refer to your conversation. I’d rather you basically wind up the conversation and just ask me a question and I can do it. As they started to trust me, they realized I wasn’t pushing any agenda. I just thought it was really important. I’m a huge advocate and I feel like it’s really important for us to understand what our patients want and try to achieve that as much as we can, medically.
Eric: I think it’s fascinating this intervention sounds like it’s very much focused on the invitation to have these discussions about prognosis, what it all means. I think it serves as a nice contrast because there was another randomized control trial for palliative care in the ICU for chronically critically ill patients. To that, there was very little invitation to discuss prognosis and what everything means. It was a really negative study with actually potentially increased PTSD in the patients or actually the surrogates that were studied. I wonder in this study, were there any side effects or negative effects of having these really hard discussions?
Arden: That’s a good question. I will say that I did not see negative side effects. I’ll mention one in a minute but what I will say is that I actually didn’t see negative side effects. One thing is after the conversation, I had an evaluation that was like how hard was this conversation, one to ten on a Likert scale. What I will tell you is that when I handed those to patients, most of those patients said what conversation? I said, well the one we just had. They said that’s your job, that’s not an intervention. It was like the conversation I had, they wouldn’t even judge. They refused to say it was an intervention because they felt so much that this conversation we had was about finding out what they wanted and putting it in their medical records and that was our job as clinicians to do.
Eric: As a side note too, I just learned from our last week’s podcast, that when we say intervention, we think of medical tests and things like that.
Eric: When we talk to patients about what they think, they think it’s like a intervention around substance abuse. You see those TV shows like intervention. It’s just like the wording that we use too often…
Arden: Exactly. The six questions I ask, that because I had done it so much seemed like a conversation and flowed through, didn’t seem like anything other than a normal social work assessment to them, which is great and gives us a lot of hope to do it but it really felt like, it felt like it was positive and people always said positive things.
The one situation that I will say that I found that as a social worker I worried about was there were several situations where we had a patient who thought they were going to live greater than five years and we had the conversation. They said no I want to know, I definitely would want my doctor to tell me. And so I would say okay, we can we meet together and I’ll help, I can make sure this conversation happens or we can do this. Do you want to bring your wife or family in and they’d say absolutely not. I wouldn’t. I don’t. I’m going to do with my doc alone because I didn’t, I may have given them some warning shots that they were sicker. I didn’t say this is going to be a conversation where they’re going to tell you something about your prognosis because again, there is a piece around that. Then at the next visit, if the patient was sitting there, and the patient said I think I have more than five years to live and the doctor said actually you’ve been getting sicker I’m concerned it may be less than that, it may be one to two years, I think you need to do that. That patient was holding information that they now think they have one to two years and their family thinks they have five years. Then the patient was in the situation where they were going to have to go back and tell their family. That was the one situation that I thought there could be a negative effect because we didn’t insist on the family member going there. I think that this would be a different situation if our patients weren’t as sick as they were.
Alex: Yet you also found no difference in depression, anxiety, spirituality or quality of life scores. There was no improvement but there was no drop either.
Arden: Yeah. We checked very carefully for that. We didn’t. It was just one of those anecdotal things that I thought if there was something here about this, that may be one thing that we should consider.
Alex: Right. This intervention is going to take time to refine, scale up, test in other settings, and yet I think it’s really interesting we can draw some implications from this already, potentially, in terms of this is a novel palliative care intervention. It’s not just a social worker led intervention, it’s basically a social worker intervention with some other components. You’ve got the prompt, you had the email to the docs that put some information in the clinical record. It sounds like you were actually involved in some of these conversations about prognosis and follow up goals of care at subsequent meetings.
Eric: Did you ever get the rest of the palliative care team involved in any of the intervention patients?
Arden: Yes. I was going to actually say that. That was actually a very important piece that I don’t want to lose here. But what I will say is that I did have obviously a cardiologist and also a palliative care doctor, Kristen Schaffer who I would meet with once a month. And, was always available to me if something came up that I felt like was complicated or over my head or that we needed some real palliative care support or if the cardiologist said I think this patient really needs a full palliative care consult, usually because of symptoms. And of the 25, 26 patients that were in the intervention group, I ran by many of the cases with Dr. Schaffer but I got her to be involved in three separate cases. One was a situation where the patient had dementia, early stage dementia and there were some concerns around capacity and I really wasn’t sure about even the documentation of these conversations and the decision making of this patient. So that felt complicated.
There was another situation where the patient had really, really specific desires around their MOLST, like I want to be resuscitated but not intubated, I want to have this but not that. And both I and the nurse practitioner who was working with this patient didn’t feel comfortable filling out the MOLST in such a way that the patient wanted it, so the palliative care team got involved in that situation. Another one was around some acute symptom management that came up during our conversation that the team felt like the palliative care team could be involved.
I had the support of that team and that’s an essential piece of it. I certainly don’t think the social workers can do this alone but I do think that especially in early palliative care, these conversations are iterative and if the social worker can be embedded in the clinic and can start having these conversations that seem normal and just start gathering information along the way, that it makes a lot of these conversations much easier later and saves time for the nurse practitioners and the doctors in the end for sure and maybe money, we don’t know about that, but maybe money.
Eric: Let me ask you this. Let’s say I’m working in a medical center that does palliative care consult, both outpatient and inpatient, but were not yet embedded and integrated in a heart failure clinic. Can you give me three things that we can do to get involved in the heart failure clinic and potentially do something like what you just did in this trial?
Arden: I think the question is and every hospital is set up differently around social work and what the social work role is. I will say that I played a really clinical role here. I was really doing a lot of these or me and the other social worker that was involved we were really doing these. But many times these heart failure clinics want a social worker. If you could have a palliative care trained social worker who had those skill sets and were willing to be able to have this conversation and also, do the other social work responsibilities that that clinic has defined as social work and what they want to do, maybe some care coordination, maybe some resource things. I think that’s the place.
I mean social workers are less expensive to be honest than embedding a nurse practitioner that does palliative care. But you can also do other things. I think this idea of embedding a palliative care clinician, whether it’s a social worker or NP or social worker with support into it seems like it’s cost effective. I just think the next steps are sort of saying what are we, I think money speaks. I think you have to do some more stuff on that piece.
Alex: This is terrific. I want to turn it to Anne and Emily here for a second. There was a lot of head nodding when you were talking about the role of palliative care social workers. I’d like to give them the chance to say their perspective on the role of palliative care social workers and whether they could see themselves in this kind of role leading an intervention for patients with heart failure.
Anne Kelly: I really appreciate a lot of Arden’s insights and comments around the leadership role that social workers can play within a palliative care team and in helping patients who are facing serious illness. I think what she’s also describing is having a shared understanding across disciplines and across the medical center culture and really recognizing and empowering social workers to play this role and really gain those leadership responsibilities in that way.
Emily: Yeah. I appreciate how much invitation and consent was involved in this process which it seems like led to a lot of trust between the social worker doing the intervention and the patient and really opened up the conversation in a way in which it could be truly patient centered. And just the fact that you got such positive feedback from the heart failure team, I wish we could spread that message across the land, getting that kind of feedback from the clinical team.
Arden: That was I feel like for me it was also, it was humbling and I was really appreciated. You walk in, you’re not sure, you’re doing this intervention. Nobody wants to talk about death, we all get this. Being a palliative care social worker as well as probably a palliative care doc, you’re not someone people usually want to see walking toward their patient.
I just feel like that after the first couple sessions and after going in, they were requesting, they were asking. And I got a lot of statements like thank goodness you were there, that was such an easier conversation because you were there. I think some of it has to do with what you said, interdisciplinary teamwork. I think all of us know that we’re better together in the vast majority of cases. If one person can’t say something, then the other one, but if I had spoken to the patient before and the patient trusted me, then I was able to ask questions and help navigate this and if the doc didn’t know where to go, I was also able to make some of those bridges. I really felt very very appreciated by the team and I would have loved to stay.
Eric: Are you still doing it?
Arden: I currently am getting my PhD so I can continue this work and so the work that I’m doing right now is in the emergency department. I didn’t stay in the heart failure clinic just because I had to go to school.
Eric: Is there a palliative care social worker in the heart failure clinic?
Arden: They are just now hiring a palliative care social worker. I think because of this study, the Brigham has funded us to embed a palliative care social worker in the heart failure clinic as well as in I think it’s renal.
Alex: Great. Terrific. So do you work with Kei Ouchi in the ED?
Arden: I know him but I don’t work with him directly. I heard his thing. I just do some of the social work. I just sort of work there, I’m sort of on call. I don’t get to really, I don’t have a 40-hour job there because I’m going to school. It’s more part-time. I don’t get to work with him yet, but someday.
Alex: I hope you continue with this work. This is terrific. Like you said, I hope somebody takes this up if not you and takes the next step.
Arden: I hope so too. I think what you said was true. This was a very small study because 40% of our patients died the final sample was clearly small. It’s hard to get a lot of power from that kind of a study. I don’t think we would have, when we set this criteria that you laid out at the beginning, we were hoping to have patients who had a prognosis of one to two years, we never would have set an intervention for a six month intervention that we thought 40% of the people would have died. We just didn’t anticipate that at all. I don’t know if these criteria could have been opened up a little bit more or because no one had done this, we got the sickest patients, I’m not exactly sure why that happened. But I do think it’s worth getting social workers trained, embedding them, seeing if these kinds of results are replicable. I think they should be though.
Eric: I think so too. Definitely hope so and I just want to say thank you very much for joining us for this podcast.
Alex: Thank you so much Arden.
Eric: It was great having you on but maybe before we end, Alex can give us a little bit more of that song.
Alex: Thank you also to our in studio guests. I love the social work theme for this week. [Singing]
Eric: That was a great palliative care song right there. Again, thank you Arden and thank you for all our listeners for joining us this week. We look forward to talking to you next week. Goodbye.
Alex: Bye everyone.