Navigating a complex health care system while living with a serious illness can be incredibly stressful for individuals and their families.
In this episode of HealthChangers, we listen to a fireside chat with Peggy Maguire, President of the Cambia Health Foundation, and author and commentator Courtney E. Martin, at the recent 2018 End Well Symposium. This powerful, one-day event brought together a diverse group of voices including actors, design, technology, policy, health care and activist communities, to explore and imagine how to live well during illness and near the end of life.
The podcast begins with an introduction and a powerful appeal by Dr. Shoshana Ungerleider, physician, speaker and founder of “End Well,” to create a cultural shift that supports new collaborations, systems, protocols, and fosters new and existing networks of support to make the end of life more human-centered for all.
Dr. Shoshana Ungerleider: I realized when I finished my internal medicine residency that I had a strong passion for palliative care education and found myself going to a bunch of conferences around the country throughout that first year. I realized that there is incredible work happening all over the country to change the conversation about serious illness, about palliative care, about hospice. But what I found was that it's mostly siloed, so doctors talk to other doctors, and hospice folks talk to other hospice people, insurers often speak to insurers, and the people in policy talk to other policymakers, and I didn't see a lot of them talking to patients and caregivers. All of these people would talk about the broken health care system which of course it is but the majority of what they could imagine doing to try to solve some of these problems was to fine tune or rearrange what we already have.
I realized that's because most of us inside the health care system and on the outside really have internalized the idea that the end of life is a medical issue, so we look for medical solutions. But I actually think that dying isn't a medical issue, it's a human issue. And so, I founded End Well a platform to invite more cross disciplinary problem solving to look at the policies, the perceptions, of health care and otherwise about how our structures whether it's the political structure, the familial structure, the social constructs can be improved to support a person's golden values at the end of life. The goal of End Well is to really break down some of these silos, to open up the conversation and forge new partnerships. Our team likes to say we're bringing the technical experts and the life experts into dialogue.
“Most of us inside the health care system and on the outside have internalized the idea that the end of life is a medical issue, so we look for medical solutions. But I think…it’s a human issue.”
Leslie Constans: I was able to attend the 2018 conference and it was so amazing to see the really multi-disciplinary view and the voices that were sharing so many different perspectives on solving and improving the experience for people with serious illness from architects, to film makers, to patients. It was really inspiring. I wanted to ask you how did the second year go from your perspective having just wrapped up the second End Well conference?
Everyone is Qualified to Engage in the Work of Improving the End of Life Experience
SU: In 2018 we grew the symposium attendance by 50% so we had over 600 people come from all over the world and several thousand were able to join over live stream. We were happy about that. We trended on Twitter for two years in a row. We have thousands who have joined the movement across all of our social media channels which is one of our big goals.
Overall, 2018 was a great year.
One of our core commitments actually was to make sure that our speakers represented a wide range of backgrounds. Fom someone like Alicia Garza who co-founded Black Lives Matter, to Alexis McGill Johnson from the Perception Institute talking about bias, to Bridgette Hempstead talking about her delays in diagnosis and treatment because of the color of her skin. I was really blown away by them, their stories. And I do think that it's incredibly important not only for us but other conferences and gatherings around the country to be making sure that diverse voices are being highlighted.
LC: Well, that leads me to my next question and that is about the fireside chat that happened at End Well between Peggy Maguire and Courtney Martin. Can you tell us a little bit about Peggy and Courtney and how did they get involved in End Well and what inspired you to pair them up?
SU: Well Peggy Maguire as you well know leads the Cambia Health Foundation and we knew that we wanted to have a conversation on stage about philanthropy and why this area is particularly important, and we honestly couldn't think of a more cutting-edge foundation than Cambia because of so many factors, from the Sojourns Scholar Leadership Program, to human-centered design and to venture capital. We asked Peggy if she'd be willing to have a conversation with Courtney Martin our fearless guide who hosted End Well the first year and then last year. And Courtney's really been involved since the beginning. She's a journalist, a speaker, she’s done TED talks and works for the Obama Foundation and has a bit of a background also in leveraging philanthropy and I think does a wonderful job of weaving together the complex and really at times nuanced pieces of the day especially because she's not a content expert in this space. We thought wouldn't it be interesting to have them in conversation together on stage and I think it was fantastic.
Health Care Shifts to More Innovative Consumer Centered Solutions
LC: We’re going to listen to this conversation in a moment. Maybe you can share what the key takeaways were from their chat? What did you leave with after listening to these two dynamic speakers?
SU: What Peggy had to say really stuck with me. She says in the beginning, "Tomorrow is not promised, every moment matters." And I think I believe this, and Peggy says this, “palliative care helps people realize the beauty in every moment.” And she talks about Cambia's commitment to furthering palliative care at every level and how the organization took a risk in funding this area of care back when it wasn't popular at all. I think for me the big takeaway is that doing what's right and not worrying about the political backlash is critical and I think that's what true leadership is all about and that's how you make lasting change. I think kudos to the Cambia Health Foundation for this.
LC: Awesome. Well, I want to wrap up and give you an opportunity to share what can we expect from next year's End Well?
SU: End Well 2019 is going to be even better. We have some amazing speakers lined up and the cool thing about this symposium is that we have such an interdisciplinary audience from designers, to entrepreneurs, to health care providers, to faith leaders, and lawyers, artists, and patients, and caregivers. We're creating even more experience for our attendees to allow them to really meet one another, to network, and participate in the day. We've listened to the incredible feedback that we've gotten from the last two years of attendees to make the day even more impactful. We're rolling out a bunch of updates over the next few months, so everybody should stay tuned at EndWellProject.org.
LC: Wonderful. Well, I can't wait to see what's in store. Thank you so much Shoshana for your time today. We're going to listen now to that fireside chat with Peggy Maguire and Courtney Martin. But really appreciate you taking a few minutes to share with us your vision for End Well, how it went this past year, and looking ahead to 2019.
SU: Thank you so much for having me.
[FIRESIDE CHAT BEGINS]
Peggy Maguire: Cambia’s talked a lot about universal truths and one of them is that every person matters. Whether you're a black woman with cancer, or a white woman with a brain tumor, or a caregiver suffering in silence, or a new baby coming into the world: every person matters. That's a fundamental tenet of what we believe. And the next thing is every moment matters, every single moment we're on this planet is important. And none of us know how long we'll be here.
We know tomorrow is not promised but we all want to make the most of the time that we have here. And we have invested in palliative care so heavily because we think that it helps people realize the beauty in every moment. It really is about what matters to people as opposed to what's the matter with them. We see people as whole people and not as vessels of disease. So, I've just been so honored to be a part of this work and a part of this movement and I can't tell you how choked up I am to see a person living with serious illness and thriving with serious illness.
Courtney Martin: It's so moving.
CM: This investment you talk about in palliative care sounds totally organic in this room, right? We all said, "Of course." It was a huge risk when you first did it about a decade ago. People were not funding in that area, there was a lot of political fear around death panels and what will people think. Is this going to seem self-serving? And you had your own folks around you who were worried about it and you guys went for it anyway.
“It really is about what matters to people as opposed to what's the matter with them.”
CM: What gave you that courage and was there a backlash?
PM: Two things. What gave us the courage was really a personal experience, I'll start there. When we founded the Cambia Health Foundation we talked about what were the areas in health care that needed transformation. As you said, we're part of a larger company, Cambia Health Solutions, and we exist to advance Cambia's cause of serving as a catalyst to transform health care, to make it more person-focused and economically sustainable. When we set up the foundation we didn't want it to be something that was off to the side, something that made us feel good about what we were doing on the business side, we wanted it to be purposeful, and strategic, and directly tied to health care transformation.
We set about thinking what areas in health care matter most and what needed to be transformed. My father was diagnosed with lung cancer at age 48 and he was diagnosed in October and he died in January after brutal treatment that left his body devastated and it really impacted the quality of life for our whole family.
Our CEO who is also a founding member of the foundation board, his mother had experienced some pressure at the end of her life to undergo unwanted diagnostic testing when she had made peace with the fact that she was dying. She was a very spiritual woman and she declined a test and one of the hospitalists said, "Don't you care about your children?" That kind of guilt feeling. And then, another one of our leaders had lost a child to leukemia and all of those interactions with the health care system were broken. They weren't person-focused, they weren't about helping people deal with all of the aspects of serious illness, of seeing people as whole people. So, we looked at palliative care, a relatively new medical specialty at the time, and thought it should be a model for the entire health care system.
CM: Yeah, you're in the right room for that one, yes.
Palliative Care Focuses on Improving Quality of Life for the Patient and Family
PM: Palliative care really starts with goals of care and understanding what matters to people and then developing a treatment plan that addresses the whole person and their family. It is, the big fallacy is that it's giving up, in fact it's really honoring life. It's keeping the spirit up, it's addressing all of the social aspects of serious illness and the emotional. We thought it was something worth investing in; anything that will really help ease the journey of people and families through serious illness.
CM: I think for me it's an example of those of us with some kind of power and privilege can sometimes over-estimate the risk to ourselves of doing things differently and it feels like philanthropically you're such a leader and I so admire that. Now you've been joined by about 20 or 30 other foundations and individual philanthropists and others who are like, "Alright they did it, we can do it too." What does the field philanthropically look like now? What are the gaps because I know there are a lot of people in this audience who may be interested in getting involved. What are the opportunities? What are you excited about?
PM: I will say when we got into the work we did have detractors, people who said, "You're crazy to invest in this work.” People will question your motives. People will think you're trying to withhold care. For us it was never about that. Our CEO again, he coined the phrase when people would ask us, "What's the ROI on this?” He put all of that discussion to rest and he said, "This is not about a return on investment, it's a return on humanity."
“Palliative care is not about giving up, in fact, it is honoring life.”
CM: Wow that's awesome.
PM: With that, I think we always knew that we were acting out of love and the detractors or the naysayers were acting out of fear. And I think we have, as we move forward with this work with that clear sense of purpose, we didn't experience as much backlash and really any backlash. We are joined now by 20 or 30 other foundations. We've made so many friends along the way including many people in this wonderful audience. Our lives and our work has been enriched by those associations. I think what's next for us and for the field is coming together, a set of common language. We know that a lot of people are still confused about what palliative care is. They tend to equate it with hospice and giving up. And we want to normalize the conversation. We want people in the field and people with serious illness to be using the same language so that people with serious illness know what to ask for and are as brave as the last speaker in demanding it and demanding the kind of care that they want for themselves and their family members.
I think you're going to see us try to drive collaboration around the use of language and consumer awareness. Many other foundations are interested in this work and we look forward to partnering with them. We want to focus on caregivers. I was so moved by Alex's talk about the vulnerability of being a patient and realizing that you're in relationship with the caregiver.
This is all about relationships whether it's the relationship between the doctor and the patient, the members of the interdisciplinary palliative care team, or the caregiver in the family. We need to recognize those relationships and really promote and celebrate them and support caregivers as they navigate through the system.
CM: Right. We want to rebrand palliative care to include all interconnected relationships.
It's also interesting because last night at the film screening [for Netflix’s “End Game”] we asked Dr. B.J. Miller if we were talking about his suspension of language which is going to be a thread throughout the day also. We're going to keep talking about language.
What do you think is helping to demystify the language around palliative care? Do you feel like we should be throwing the term out and trying to completely [change the language] or do you feel like it's a matter of educating people?
Consumer Awareness Within Palliative Care Served Best by Cross Disciplinary Collaboration
PM: I think we should say what it is, what it provides. So, if you were a patient, for example, and a doctor or a member of the interdisciplinary team is going to talk to you about what matters to you, is going to be really clear about your choices, and is going to work with you to manage the pain and symptoms of your serious illness, is going to include your family in the treatment plan, is going to support you as you heal from this disease or not. If you describe the services that are included in palliative care everyone wants them. It’s about really living well and living life to the fullest until you take your last breath just as you shared with us. I think that's really what palliative care is. I think someone once said to me, "We need to hire a marketing firm and rebrand it right."
CM: I think we do.
PM: We're on the cusp of a major rebranding effort that will drive the social movement.
CM: That's great. So, if you're interested in that obviously get in touch.
PM: Yes please.
CM: What are other things for those who are in the audience and thinking they want to be part of this growing movement of philanthropists in particular who are putting their money behind some of these efforts? What should they be thinking about as they start that journey?
PM: I think make it personal. Remember that all of us at some point will be patients, all of us will be care givers, all of us will have our own journey and experiences. And think about creating the kind of health care system for the world that you would want for yourself and for your family members. I think health care essentially is personal to all of us and we need to always keep that at the forefront. It's not some big system amorphous payment model, it's like what do you want and how do you want to be treated.
CM: Great, thank you so much Peggy. Let's give a big round of applause.
Links and Resources:
- HealthChangers on iTunes
- Episode direct download link
- HealthChangers podcast archive
- Dr. Shoshana Ungerleider
- End Well Foundation