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2023 Circle of Life Honorees: Leading the Way in Palliative and End-of-Life Care
The American Hospital Association is proud to be a major sponsor of the 2023 Circle of Life Award, which honors health care organizations that are demonstrating innovative palliative or end-of-life care to impact the patients, families and communities they serve. In this conversation, Martha Twaddle, M.D., Waud family medical director for palliative medicine & supportive care at Northwestern Medicine, talks to this year’s three honorees about what drives them to overcome the barriers in palliative care, and their ability to build trust and relationships during extremely difficult times.
- Apply for the 2024 Circle of Life Award - How do you know if your organization is ready to apply for a Circle of Life Award? An innovative palliative or end-of-life care provider that is measuring and evaluating the impact of its work on patients, family, and/or the community is ready to apply for a Circle of Life award. Honorees are emphasizing coordinated or integrated care delivery throughout all settings, engaging underserved populations, promoting palliative care in diverse populations using strategies for engaging communities, creating partnerships with other health care organizations and practitioners, and initiatives within long-term care facilities. Please contact circleoflife@aha.org with questions.
Transcript
Tom Haederle
As America's population ages, the value of palliative care and hospice services comes into sharper focus for many people. That's why the American Hospital Association is proud to be a major sponsor of the annual Circle of Life Awards, created to recognize better, more innovative and less expensive ways to treat seriously ill patients and provide the compassionate support and comfort they deserve.
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:Tom Haederle
This quiet corner of our health care system may draw less attention than some others, but the work it does and the difference it makes in patients and families lives is every bit as important.
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:Tom Haederle
with AHA Communications. The:
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:Tom Haederle
In this podcast, hosted by Dr. Martha Twaddle, the Waud Family medical director for Palliative Medicine & Supportive Care, Northwestern Medicine's North Region - this year's three honorees share what drives them to overcome the barriers that for far too long have prevented seriously ill patients from getting the most appropriate care.
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:Martha Twaddle, M.D.
It is a tremendous pleasure to be hosting the Circle of Life Awards podcast and to have these amazing individuals with me today. You know, when you first speak, if you would be so kind as to introduce yourself in the process of speaking, I think would be a warm intro into this. And so I'm Martha Twaddle. I’m the Waud Family medical director of hospice and palliative medicine.
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:Martha Twaddle, M.D.
Actually, that's what we call ourselves. Palliative medicine and supportive care at Northwestern North region and been there for a number of years. And I have the distinct pleasure of chairing the Circle of Life Committee for a number of years, and I get to be here with Michael Wargo, David Wu and Jeanette Boohene, and we're going to kick it off right away talking about why in heaven's name did you all apply for the award?
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:Martha Twaddle, M.D.
What prompted you to pursue the award and what did you learn? What was the process like for you? So David, maybe you could kick off.
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:David Wu, M.D.
Of course. I was going to jump right in anyway. So my name is Dr. David Wu and I lead the palliative program at Johns Hopkins Bayview. I'm an associate professor at the Johns Hopkins School of Medicine. So I think a lot in terms of story and one thing I learned through this process was it made me think about the summative story of our program over the last several years since I've led the program.
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:David Wu, M.D.
And we started very small, just as one doctor and a social worker and a half of a pharmacist. And I just it was wonderful to reflect on how we've grown to a robust team of ten and built an academic program and think through challenges that we overcame and what we've been able to accomplish in the last six and a half years or so.
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:David Wu, M.D.
So that was a really wonderful and rigorous process.
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:Martha Twaddle, M.D.
Would you say that in the process was your whole team there with you as you did that year, or was that something that you experienced or how did you do a review of where you've been?
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:David Wu, M.D.
Yeah. So going through the different rounds of the application I spearheaded writing up the written pieces with, of course, support from key members of our team. And then the site visit was very much a team effort as it needs to be. So we are pretty much all involved in planning and preparing and being part of the site visit and telling our stories together and I think through the process also it was really informative to learn.
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:David Wu, M.D.
So easy for us to say, hey, we're so innovative, we've thought of all these creative things, but it's a whole different thing to have national experts come and say, wow, what you're doing is really different and important. And so that's been incredibly affirming and inspiring.
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:Martha Twaddle, M.D.
How about you?
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:Jeanette Boohene, M.D.
So, hi, I'm Dr. Jeanette Boohene, and I'm the chief palliative care officer for Landmark Health, which was we were actually Prospero Health when we put in this application. I was the regional medical director at that time for seven states at Prospero Health. And since we have since unified with Landmark Health and Optum home and community care. And David and I spearheaded the work. As Prospero care were a startup.
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:Jeanette Boohene, M.D.
ame to my state of Arizona in:
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:Jeanette Boohene, M.D.
probably, the things that we had done. And at that stage we were in 26 states doing home based palliative care. So the model was new using value based care model and not fee for service and being able to actually have a true and citizenry team involvement, interprofessional team involvement and providing care to our patients at home. So that thought was, well, maybe we should share and see what others think.
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:Jeanette Boohene, M.D.
Again, doing that first step was really - we're going to try and see what comes of it. So then we got to part two, and that was the site visit. And being in 26 states, it was now, okay, where are we going to go for the site visits? And so we picked our head office, but we also picked a team with trying to figure out which team.
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:Jeanette Boohene, M.D.
So that was a difficult discussion or which team did we pick? Also had some community relationships with hospice agencies, so it actually brought us together, collaborating a lot better with our hospice partners. And then it validated really the work we had been doing. So it was a real good validation, it was a good morale booster and just also brought to light some of our gaps.
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:Jeanette Boohene, M.D.
Having scaled so fast...certain things that we may not have been as purposeful or even paid attention to. So it brought to light some of this. So it's been in that situation. It has helped us think through our next phase. But the morale has been a real morale booster and unification. It's doing this on this stage has really been a good thing for the bigger team.
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:Jeanette Boohene, M.D.
The whole organization. Yeah.
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:Martha Twaddle, M.D.
Mike, how about you?
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:Mike Wargo
nd a long time. We started in:
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:Mike Wargo
And through the years we've grown from a single focus in Saint Joseph County, Indiana, South Bend. Those are you might be listening, might know South Bend, the University of Notre Dame is there. Indiana University as a large regional campus there as well. And so for us, we began spreading our wings around other counties across north central Indiana.
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:Mike Wargo
we went through a process in:
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:Mike Wargo
And so we were starting up a new palliative care program at that time. We had just started the Center for Education Advance Care Planning as extension of our programs. We were involved with a number of different universities. We were just getting ready to take on Global Partners in Care, which is our international program. We've got about 80 partners all around the world, over 100 with various collaborators.
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:Mike Wargo
So we were at a point where it was probably a little early for us to be applying for the award because there was so much that was in a state of flux at that time. Fast forward a few years and we completed our campaign. We completed our Mishawaka, Indiana campus, which is a six acre campus adjacent to downtown Mishawaka, Indiana.
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:Mike Wargo
hin a couple of years back in:
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:Mike Wargo
She wrote the application in:
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:Mike Wargo
thank you very much for it. That's I think when people are going through that process of trying to determine whether or not they want to go through that process, I would encourage people to do it. It's much like accreditation at universities where you are forced to look at every single thing you do and how well you do it and someone is going to judge you and determine it
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:Mike Wargo
does that meet the standard? And I think it's like a report card in a way. And so that was a very valuable process for us to go through, and we're just grateful to have made it through to the other end.
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:Martha Twaddle, M.D.
You know, what I'm hearing is you all have used it as a tool and the deliberation or intentionality around what have we done? And like you said, Jeanette, where are the gaps? Yeah, I've heard of some programs over these years who've used it somewhat as a strategic planning tool. Where do we need to perhaps focus before we even think like you so beautifully stated that you want to think, When do I want to apply?
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:Martha Twaddle, M.D.
Right? And in the process of starting the application, you find, you know, I'm not really ready to move this through. Do you feel like when the awards actually came in the site visit, do you feel like it's shown the light on that which you were most proud of or did the award actually illuminate perhaps other aspects of what you're doing?
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:Martha Twaddle, M.D.
Anyone can jump in here is signal me with your fingers or whatever, as perhaps in the process you discovered new things that you were doing that you hadn't really recognized how wonderful they are.
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:Jeanette Boohene, M.D.
I would say it did shine light on the things that I think we're proud of, especially the transition that we were about to go through and have since gone through. And we just completed unification in June this year. But highlighting the things that we've been doing well and the things that we need to build on. So to your point, helping us even with our strategy as we go forward, but shining light on the fact that this is important work, that we know how to do this work.
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:Jeanette Boohene, M.D.
We have teams in place that are already doing this and then coming together with our Landmark colleagues, recognizing that this is work that we're going to build on. And because we need to. We're in a space, we're in a unique space I think for our program where we're in the home-based space, we're actually integrated into the model of care and actually emphasizing that we are part of the care model.
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:Jeanette Boohene, M.D.
So the long term goal care, but also behavioral health, palliative care, pharmacy outpatients, population means the whole continuum, the edge and care component. And so it's really the things that we were starting to build on as a small startup, which we now have leapfrogged into this space where we really have the potential to serve 200,000 patients in 36 states.
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:Jeanette Boohene, M.D.
And we should. And said this is the time to do it, and then we're in the space and half of the backing. We have Optum recognizing best in class teams, bringing them together, recognizing this is important work and this just, I think helps us say it is and we can do it. And hopefully in a couple of years be able to re reapply and show what we've done going forward with this building on what we've done.
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:Jeanette Boohene, M.D.
So I'm looking forward to that. It's good the next time we do this.
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:Martha Twaddle, M.D.
Keep using the
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:Jeanette Boohene, M.D.
tool, use the tool.
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:David Wu, M.D.
Yeah, Yeah, that's wonderful. Jeanette And I would say similar that for us. I think the process did highlight strengths, but also in some surprising ways. So the three ACT model is the narrative approach that goes to care conversation that we designed at Bayview. And I think it's a bit countercultural. There are other leading models that are very widespread, and so I've always wondered how well-accepted this innovation would be in a field where we already have some pretty widespread models.
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:David Wu, M.D.
So it's very affirming to have that recognized as something that was important to the field and important to be disseminated further. And for that we've published a series of papers, we've produced academic evidence. We have PICRA, which is our palliative interprofessional collaborative reaction research, which is a partnership that grew from the grass roots between me and a few really amazing Ph.D. researcher colleagues in the Hopkins School, the Schools of nursing and Public Health.
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:David Wu, M.D.
With that collaborative, we're working on multiple projects in that intersection of social justice and palliative care and really around the methodology of community co-design in everything we do. But we published the conceptual papers. We haven't gotten to the stage yet of actually publishing on our findings. So from an academic standpoint, that would be considered premature to start spreading the ideas, right?
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:David Wu, M.D.
But through this process, actually that was identified, recognized, highlighted as a very unique strength of our program, that we're built that partnership that's not only across institution, but with our community, where we're bringing the community in and empowering them in redesigning everything that we do. So to have that recognized at this relatively earlier stage, I think is a that was a powerful statement to me and very inspiring.
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:Martha Twaddle, M.D.
It's very energizing, isn't it?
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:David Wu, M.D.
Oh, yeah, definitely.
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:Martha Twaddle, M.D.
And then you can go and do the publication.
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:David Wu, M.D.
Yeah. And then we can actually finish these six projects and hopefully publish on them.
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:Martha Twaddle, M.D.
Yeah. How about you, Mark? Did you feel like the process of the award? You all are an amazing institution in northern Indiana. Do you feel like it's been something that you've been able to leverage for further benefit?
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:Mike Wargo
For us, I think we're talking about gaps and identifying gaps in service, and I think many of the things that we did through the years, it was purposeful, but at the same time they were independent of one another. And once we went through this entire process, we began to recognize the fact we built a continuum of care from the time of a diagnosis.
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:Mike Wargo
And I use dementia as an example. Persons diagnosed with dementia. Initially, we have caregiver support, we have adult day services we're able to provide. We also then can provide palliative care there onsite at Milton Village, although we have a offsite palliative care center as well. We do outpatient consultations, but we actually go there and then can bring those patients in again, being communicative with the patient's caregivers as we go through that and then ultimately as they move on to being eligible and appropriate for hospice care, being able to do that.
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:Mike Wargo
But the other thing we've done is we've got our caregiver education and anticipatory grief process that really is in place then as we go through to the end. And once that that patient passes away, we move on then and are able to provide those services through our life transition center and are able to follow those folks through their journey as they go through the bereavement process.
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:Mike Wargo
And so all of these things along the way...again, it is purposeful in the way that we were individually creating programs. But I don't know that we ever really thought about how one feeds to the next and feeds to the next until we really went through this process. And it's given us the opportunity to step back and look at where there might be gaps in some of this programmatic programmatic elements of that.
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:Mike Wargo
And it's whether it's a patient who is diagnosed with dementia, congestive heart failure or COPD, wherever they are, we have specialty programs to meet them at that at stage and work with them and their caregivers all the way through. And so it's been an awakening, I think, for us as we've gone through that. And I think that's been very beneficial.
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:Mike Wargo
But being a nonprofit, communitybased program that's been around for a long time, we have the benefit of a lot of people know who we are. We've cared for a lot of folks, but we still go back. As we were talking earlier today, the hospice is like Kleenex. People think it's just all the same thing. You're all part of this big mothership somewhere.
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:Mike Wargo
Right? And the reality of it is we all have individual programs, whether hospital based or they're community based, their home health, it's focused on palliative care. Our international program, we've learned so much from international programs, people in other countries know what palliative care means better than they do in the United States. So we've learned a lot through that, and I think that's helpful, and we're happy to help others as we go through that process.
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:Mike Wargo
I think I don't speak for my colleagues here, but I know we would welcome the opportunity to speak with people who are interested in trying to not replicate our models, but are interested in learning from that and how they can adapt that for their own environment.
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:Martha Twaddle, M.D.
Absolutely. And that actually is when you win this award, you are showing up, as you said so often, that we're going to share, right? We're not going to give you those things that are proprietary or whatever, but it's the opportunity to raise our votes. And this is how because so much needs to be done in this field. And so part of the award.
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:Martha Twaddle, M.D.
Have you thought about what you would like to see happen in the education process? I mean, if you could craft that or create that, what would you like to have as far as outreach?
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:David Wu, M.D.
You mean as a result of this? Well, yeah. I mean, so one thing is even today, the three of us have been talking.
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:Martha Twaddle, M.D.
Oh, that's so great.
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:Mike Wargo
About
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:David Wu, M.D.
creating a joint presentation.
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:Martha Twaddle, M.D.
Wonderful.
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:David Wu, M.D.
And charging $100 admission tickets.
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:Martha Twaddle, M.D.
Then subsidize their for.
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:David Wu, M.D.
The funding kind.
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:Martha Twaddle, M.D.
Of low. Maybe we want to really figure that out.
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:David Wu, M.D.
Yeah. And then next year will be 200.
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:Martha Twaddle, M.D.
Okay, there you go.
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:David Wu, M.D.
Wonderful. So amazing to meet both of you and to think already about the synergy that we can have and collaborate and present some of the lessons that we've learned and mistakes too. And I'm totally 100% agree with both Mike and Jeanette, and we would love to share ideas and have people visit and help other programs in whatever way we can and make other connections.
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:Martha Twaddle, M.D.
Getting the word out. Yeah.
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:Jeanette Boohene, M.D.
I mean, as a palliative care, we learned along the way a lot of us have been in this space for a long time. The way forward has been to share, to learn from each other. Yeah. And to avoid some of the pitfalls, the things that have been tried and tested and really don't expend the time doing that.
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:Jeanette Boohene, M.D.
So I think it comes naturally and immediately without prompting me. All three of us just agreed that there's a lots here.
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:Martha Twaddle, M.D.
Between there is the brain trust.
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:Jeanette Boohene, M.D.
Yes.
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:Martha Twaddle, M.D.
And for the exciting. Well and you all represent a different facet of the continuum in many, many ways. That's really exciting to even think about some sort of collaboration of even imagining cases or how this could work for programs. And I love what you say about the pitfalls, because one of the things I think is growing in the field is I don't really want people to earn their bruises and gashes by making the mistakes I made.
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:Martha Twaddle, M.D.
I'd rather they, to the degree that it's helpful suggest like to to consider there's another path that you might want to address. And it's also funny, the perspective of many years to the new ideas that aren't quite so new like, Well, we did that in '97 and this is what we found. And perhaps you want to build on that in a different way.
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:Martha Twaddle, M.D.
But there in the process, is there anything that shows up for you that you think to yourself, I wish that I'd known that what I have done this a little differently had I known, Is there anything that pops up in your mind?
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:Mike Wargo
It worked out okay for us. I think your I'm sure there are many things I would do differently, of course. But yeah, one of the things that I and this is not necessarily totally responsive to your question, but I do think that one of the things that I have learned and my colleagues and I talk about it frequently is that there's not a one size fits all solution.
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:Mike Wargo
There's just a lot of different things that people are doing. And guess what? None of it's new. Yeah, you're innovating off of other people's ideas. It's like, is there any such thing as an original song today? Who knows? But I do think that it's all been done before. It's just framed a little differently. Done a little differently for a different constituency, for a different audience with a different spin.
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:Mike Wargo
And the thing that I've learned is, and I learned this from my colleagues in sub-Saharan Africa in the work that we've done there through the years, is your approach has to be culturally appropriate, has to be appropriate for the audience, for the community, and you can't just force things to fit the way you think they should fit, and they need to evolve on their own.
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:Mike Wargo
But there's these seeds that I think can be planted along the way. I learned a lot today. I'd love to maybe go back and try to figure out how those things fit in our own program.
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:Jeanette Boohene, M.D.
I think going back to basics was one of the things that I actually learned. And as we unify it and I keep going back to much bigger teams now, but it's really just going back to basics because we take a lot of things for granted that we know how to do this, that there's a lot of things that we really can go back and just review and teach as we have our workforces expanding significantly and we have a changing workforce because of where we are right now.
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:Jeanette Boohene, M.D.
So I've had a few "aha" moments through this, just even looking at what we presented for the award, but also where we are and how are we going to use that work to inform going forward. Thinking about primary palliative care, because I really think primary palliative care needs to be in the water and I'm biased, but I really think that if we're going to touch patients and beyond, we really need to go back to the basics and do that primary palliative care principles and teach that and make sure that our colleagues across the board are all we're all doing that work.
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:Jeanette Boohene, M.D.
Yes. So that when our patients get to the stage where things are more complex, there is a much smoother transition to having advance care planning conversations and getting you advance directives should be all that seriously ill patients. That should be part and parcel of what our teams should be doing. And that's what we are teaching. And then recognizing that this is not a one and done.
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:Jeanette Boohene, M.D.
These are conversations that are ongoing.
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:Martha Twaddle, M.D.
This is relationships.
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:Jeanette Boohene, M.D.
Relationships and trust building. But still attending to all the complicated things, but making sure that you're actually addressing the basics and having these conversations. And as we do that, we're seeing our patients upstream. When we get to the more difficult stages, hopefully we will transition our patients much smoother. It will be a bumpy process. Yes. What we currently witness in our health care system.
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:Martha Twaddle, M.D.
You know, and I think that was audacious days when we would envision this as a subspecialty, announced that we were going to make this lofty goal. Charles Van Gundy. The reason Charles would always say with a twinkle was, remember that when you're a subspecialty, every medical student has to spend time with you. Really, the lofty goal of creating the subspecialty was to reintegrate whole person care back into medicine.
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:Martha Twaddle, M.D.
To correct Cartesian dualism was to bring body, mind and spirit truly and start off with who's the person and what do they love and who do they love and how do they like to make decisions and start in that place, rooted in that place. And it is exciting to see, as you said, the primary palliative care, to see those folks who have grown up in this era where more and more they have had some experience with palliative care, whether indirectly or directly rotated, worked with referred to.
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:Martha Twaddle, M.D.
And it's powerful because they even in small ways adjust their communication and such. And I it's very reassuring as I get older that perhaps the person at the bedside would say, tell me more. You know, the language is there are phraseology that we use. It's very, very exciting. And I think times like this, this award and what it represents gives us that opportunity to celebrate and reminds us how important it is to celebrate, to take the time to appreciate each other, to find new synergies, new opportunities, and then to carry it forward.
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:Martha Twaddle, M.D.
Super, super excited about it.
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:David Wu, M.D.
Yeah, absolutely. It's amazing to speak with you and hear your perspective of the field over decades. Even though you're a very young leader.
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:Martha Twaddle, M.D.
You're so kind.
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:David Wu, M.D.
And just reflecting on all the comments shared and how in many ways premiere point of care education is also a passion of mine, and we've been able to integrate the three model now in several Johns Hopkins training programs, and that's no small feat, but in many ways is what we're doing totally new? No. In many ways we're trying to find different path to get back to the basics of what doctors and nurses and other health care professionals have been writing and working in for decades, centuries even.
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:David Wu, M.D.
But it just goes to show just how the pull towards the technical just seems to be a constant pull. And in the beauty of head of care is - and this is where I think we can have the most impact on health care broadly - is we can be the conscience of the field and make sure that as many people in health care as possible are keeping the patient front and center, hearing their voice empowered and connecting with that patient and their family on the heart and soul level. That's where I think we can have the biggest impact on palliative care.
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:Jeanette Boohene, M.D.
And empower our patients to speak up. I think that's what we're going to see.
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:Martha Twaddle, M.D.
To be advocates.
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:Jeanette Boohene, M.D.
Yes. Yeah, I think it's for themselves. And listen.
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:Martha Twaddle, M.D.
Yeah, well, we're supposed to wrap and I am so grateful for this time to speak with you all. And I look forward to seeing how you celebrate. Send pictures, post them freely, and blessings in the work you do. Thanks.
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:Jeanette Boohene, M.D.
Thank you so much. It's been a privilege.
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:David Wu, M.D.
Yes.
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:Tom Haederle
For more information about the Circle of Life Award and to join our mailing list, please go to www.aha.org/circleoflife
