What's Next for Palliative Care?

Interviewer: Peggy, that’s a hard act to follow. Can you sing?

Peggy Maguire: That was unbelievable. It was so amazing. I’m really choked up.

I was thinking about what I wanted to tell you about the Cambia Health Foundation, and I think she just demonstrated what we’re all about.

We’ve talked a lot about universal truths today. One of them is that every person matters.

Whether you’re a Black woman with cancer, a white woman with a brain tumor, 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.

The next thing is that every moment matters.

Every single moment we’re on this planet is important, and none of us knows how long we’ll be here. Tomorrow is not promised, but we all want to make the most of the time we have.

We have invested so heavily in palliative care because we believe it helps people recognize the beauty in every moment.

It’s about what matters to people, rather than what’s the matter with them.

We see people as whole human beings, not as vessels of disease.

I’ve been so honored to be part of this work and this movement. I can’t tell you how moved I am to see a person living with serious illness and thriving with serious illness.

Interviewer: This investment in palliative care sounds completely natural in this room. We’re all thinking, “Of course.”

But it was actually a huge risk when you first made it about a decade ago. People weren’t funding this area. There was a lot of political fear around “death panels” and questions about whether this would appear self-serving.

You had people around you who were worried about it, and you went forward anyway.

What gave you that courage? Was there a backlash?

Peggy Maguire: What gave us the courage was personal experience.

When we founded the Cambia Health Foundation, we talked about which areas of healthcare needed transformation.

We’re part of a larger company, Cambia Health Solutions, and we exist to advance Cambia’s cause of serving as a catalyst for transforming healthcare, making it more person-focused and economically sustainable.

When we created the foundation, we didn’t want it to be something off to the side, something that simply made us feel good about what we were doing on the business side.

We wanted it to be purposeful, strategic, and directly connected to healthcare transformation.

So we began thinking about which areas of healthcare mattered most and what needed to change.

For me, it was personal. My father was diagnosed with lung cancer at age 48. He was diagnosed in October and died in January after brutal treatment that devastated his body and deeply affected the quality of life for our entire family.

Our CEO, who was also a founding member of the foundation’s board, had a mother who experienced pressure near the end of her life to undergo unwanted diagnostic testing.

She had made peace with the fact that she was dying. She was a very spiritual woman, and she declined a test.

One of the hospitalists said to her, “Don’t you care about your children?”

It was that kind of guilt.

Another one of our leaders had lost a child to leukemia.

All of those interactions with the healthcare system were broken.

They weren’t person-focused. They weren’t helping people navigate every aspect of serious illness or seeing them as whole people.

We looked at palliative care, which was a relatively new medical specialty at the time, and thought it should be a model for the entire healthcare system.

Palliative care begins with understanding a person’s goals and what matters to them. Then it develops a treatment plan that addresses the whole person and their family.

The great misconception is that it means giving up.

In fact, it honors life. It keeps the spirit up. It addresses the social and emotional dimensions of serious illness.

We believed that was worth investing in. Anything that can ease the journey of people and families through serious illness is worth supporting.

Interviewer: I think it’s a great example of how those of us with some power and privilege sometimes overestimate the personal risk of doing things differently.

Philanthropically, you were such a leader, and I really admire that.

Now you’ve been joined by 20 or 30 other foundations and individual philanthropists who are saying, “They did it. We can do it too.”

What does the philanthropic field look like now? Where are the gaps? There may be people in this audience who are interested in becoming involved.

What opportunities excite you?

Peggy Maguire: When we entered this work, we did have detractors.

People said, “You’re crazy to invest in this. People will question your motives. They’ll think you’re trying to withhold care.”

For us, it was never about that.

When people asked about the return on investment, our CEO put that entire discussion to rest.

He said, “This is not about a return on investment. It’s a return on humanity.”

We always knew that we were acting out of love, while the detractors and naysayers were acting out of fear.

As we moved forward with a clear sense of purpose, we didn’t experience much backlash. Really, we didn’t experience any.

We’ve now been joined by 20 or 30 other foundations, and we’ve made so many friends along the way, including many people in this wonderful audience.

Our lives and our work have been enriched by those relationships.

I think the next step for us and for the field is developing a common language.

A lot of people are still confused about palliative care. They equate it with hospice and giving up.

We want to normalize the conversation. We want people working in the field and people living with serious illness to use the same language.

People with serious illness should know what to ask for and feel empowered to demand the kind of care they want for themselves and their families.

You’re going to see us drive collaboration around language and consumer awareness. Many other foundations are interested in this work, and we look forward to partnering with them.

We also 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 a relationship with a caregiver.

This is all about relationships, whether it’s the relationship between a doctor and patient, among members of an interdisciplinary palliative care team, or between a caregiver and a family.

We need to recognize, promote, celebrate, and support those relationships as caregivers navigate the system.

Interviewer: When we do that campaign to rebrand it, I feel like we could build the entire campaign around, “I don’t receive it in the name of Jesus.”

I was thinking, “See me, not my disease,” but hers is a lot better.

It’s also interesting because, at last night’s film screening, Dr. BJ Miller and I were talking about his suspicion of language. That’s going to be a thread throughout the day. We’ll continue talking about language after lunch.

What are you finding that helps demystify palliative care?

Should we throw out the term and completely reframe the language, or is it a matter of educating people?

Peggy Maguire: I think we should describe what it is and what it provides.

A doctor or another member of the interdisciplinary team will talk with you about what matters to you. They will be clear about your choices and work with you to manage the pain and symptoms of serious illness.

They will include your family in the treatment plan and support you as you heal from the disease, or if you don’t.

When you describe the services included in palliative care, everyone wants them.

We should make it about living well and living life to the fullest until you take your last breath, just as the previous speaker shared with us.

That’s really what palliative care is.

Someone once told me, “You need to hire a marketing firm and rebrand it.”

And I’m serious. They’re right.

We’re on the cusp of a major rebranding effort that can help drive the social movement.

Interviewer: That’s great. Those who are interested should get in touch with us.

For the people in the audience who want to be part of this growing movement of philanthropists putting their money behind these efforts, what should they think about as they begin that journey?

Peggy Maguire: Make it personal.

Remember that all of us will be patients at some point. All of us will be caregivers. All of us will have our own journeys and experiences.

Think about creating the kind of healthcare system you would want for yourself and your family.

Healthcare is personal to all of us, and we need to keep that at the forefront.

It isn’t some big, amorphous system or payment model.

The questions are: What do you want, and how do you want to be treated?