Palliative Care with Peggy McGuire

Cambia Health Foundation President Peggy Maguire talks the ins and outs of palliative care and what the rest healthcare could learn from it.
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You can find more about Peggy McGuire here.

Palliative Care with Peggy McGuire – Podcast Transcription

 

Peggy McGuire is the champion of many causes. Chief among them is palliative care, which we explore in this conversation we had at the 2018 End Well symposium, one of America’s leading death and dying conferences. 

Kelly MacLean: Welcome to the When You Die podcast. I’m Kelly MacLean. My guest today is Peggy McGuire. Peggy is the president of Cambia Health Solutions, a century-old organization dedicated to transforming health care. Cambia is a family of over twenty companies that work together to make the health care system more economically sustainable and efficient for individuals and their families. Their solutions empower more than seventy million Americans nation-wide. Peggy, can you tell us a little bit about Cambia?

Peggy McGuire: Sure. Cambia Health Solutions is a total health solutions company, located in Portland, Oregon. We have about five thousand employees and I think twenty-something companies in our family of companies. Our reason for being, why we exist, is to serve as a catalyst to transform healthcare, to make it more person-focused and economically sustainable. So Cambia rests on four pillars. First, is the Foundation, which I lead. Second, is our hundred-year legacy as a health insurance company. Third, is the consumer-experience platform that we’re building and that’s in beta testing right now. It will be launching in the market in 2019. And then the fourth one is a joint venture between Cambia and Blue Cross Blue Shield of North Carolina, where we’re jointly investing in solutions that will help people throughout their health care journey.

KM: That’s refreshing.

PM: Yes. You hate to give yourself a compliment, but I think we’re a pretty innovative company that starts from looking at the experience that people have with the health care system. We fundamentally have looked at places where the system is in need of change and of transformation, and clearly one of those areas is in helping guide families through serious illness care.

When we set up the Foundation back in 2007, we wanted to pick an area in health care that needed transformation. And based on personal experiences, we knew that this journey through serious illness and end of life was in need of transformation. And that’s where we really started investing philanthropically to change the culture of health care.

KM: I loved one of the doctors, the second one who spoke today, who came in like a warrior in the war against death, like it was his job to defeat death.

PM: Yes. That very much resonated with me. I’ve talked to so many people today, so forgive me if I’ve told you this before, but when I was 23 years old, my Dad was diagnosed with lung cancer, and it was the first time anyone in our family had ever been sick. You know, he was a pretty active guy, so it was a real shock to the family that he got sick. And so we fought the disease with everything we could. That was the language: “You’re going to fight it.” “He’s a fighter. He’s not giving up.”

KM: Right. Strong versus weak …

PM: Right, right.

KM: … kind of thing.

Palliative Care

PM: So he had chemo, he had radiation. By the time he was diagnosed, which was in October, he had a tumor in his lymph node, and he found out because he was at the golf course, and he had trouble swinging the golf club. So he went to the doctor to have a look at that, and there were tumors in a lymph node and in his lungs and in his brain. Obviously, it was pretty far along, but we didn’t know better. And no one suggested palliative care, no one suggested a different path.

KM: And there’s no education you get in school, or anywhere, to tell you that that exists.

PM: Right.

KM: Or that you have, you know …

PM: … options. Right.

KM: You don’t have to do exactly what the doctor thinks is best.

PM: Right, right. That was a while ago, and I think health care’s come a long way since then, but …

KM: … at the same time …

PM: … it hasn’t.

KM: There are people my age who have the same story about their dad, more or less.

PM: Yes, so that’s why we’ve made this investment through the Foundation: we’ve invested over $30,000,000 to advance the field of palliative care, because we think that it has the potential to change that experience for people with serious illness and for their families. It really is focused on the goals of care. What matters to people, and what are their goals, values and preferences? And then creating a treatment plan that helps them live well every day of their lives. I feel we’ve come a long way in health care, but there’s still a long way to go.

And I think a lot of it depends on enabling and empowering consumers to put pressure on the system. I think we’ve educated doctors (and we need to continue to educate them) to spend more time on things like communication skills and understanding that healing may not involve fighting the disease but healing the spirit. Consumers, people with serious illness and their caregivers, really have the opportunity to become educated and to make demands on the way they want to live and the way they want to die.

KM: What is the obstacle you’re facing with that and with people’s openness to palliative care to begin with?

PM: I think the biggest obstacle that I’m seeing is that people are unfamiliar with palliative care. They tend to equate it with hospice. Palliative care is really appropriate at any age and at any stage of a disease. It’s really that extra layer of support that helps people with serious illness live well.

KM: It’s become synonymous with just making you comfortable in your final days, but that’s not actually the definition of it.

PM: Right, right. That’s hospice.

KM: Yes.

PM: That’s what you’re talking about. You know, hospice is a specific Medicare benefit that requires a person to give up curative treatment and to have a doctor certify that they only have six months to live. That’s not palliative care. Palliative care is best provided at the time of diagnosis all the way through the journey with serious illness. I think it helps people deal with the diagnosis itself, right? To emotionally and spiritually respond to that kind of a diagnosis and then to live well with the serious illness. And they may recover.

KM: Does it even improve their chances?

PM: Yes.

KM: I always think that to have that kind of care might help them improve.

PM: There’s a major study that shows that people who receive palliative care actually live longer and experience less depression than people who do not receive palliative care.

KM: Amazing!

PM: Yeah, and the survivors suffer less grief and less depression as well.

KM: Do you remember where that study is from?

PM: One of the studies I’m referring to is the Temel study, but there’ve been a number of studies. I can send you some of their websites. I have that paper in my office.

KM: That would be great. It sounds like some people might refuse palliative care, because they see it as throwing in the towel, so to speak.

PM: I think that happens a lot. At the airport recently, I happened to talk to a dad whose daughter had been diagnosed with breast cancer. I was talking to him about my work in palliative care, and he said, “Oh, when they talked to my daughter about that, she said, ‘No, I’m not ready.’” And so it just shows there continues to be this misunderstanding about what it is.

KM: If that’s the case, I would think it must not be fully explained correctly.

PM: That’s right. And I think people talk about it in a number of different ways. The way that people have talked about it has changed over the years.

KM: Mm-hmm.

PM: So I think what we need is to get all of the people speaking the same language and pull together as many different organizations as we can and say, “What are the words that we want to use to describe this?” Somebody said, “Whoever turned squid into calamari should be hired.”

KM: Yes! [laughs]

PM: [laughs] To change …

KM: Brilliant.

PM: … palliative care …

KM: Yeah.

PM: … we need a major social marketing campaign.

KM: Because it’s actually just a word that maybe makes some people’s hackles go up.

PM: Right.

KM: Because they only …

PM: Right.

KM: … know it in reference to when grandma was in hospice or whatever.

PM: Right. Exactly.

KM: Interesting.

PM: Empathy is sometimes lacking in health care. I know that it leads to dissatisfaction for providers as well, because I think people go into medicine because they want to help, and they want to heal. And then they get into our broken system, and they have to see people in 15-minute increments. Empathy in health has been removed from health care, and it shouldn’t be. One of the most important, most personal things that we deal with is our health and well-being, but we have made it difficult for our healers to be empathetic in the way that we’ve set up payment systems, and so on.

KM: As well as their burn out, which one of the speakers was …

PM: Yes, yes.

KM: … just talking about.

PM: Because we’re asking them to do a lot, right?

KM: The doctor will make you feel like they don’t have time for you, and it’s also true that they don’t really have time for you …

PM: Right.

KM: … because that’s not the way they’ve been told to schedule.

PM: Yes. That second speaker really resonated with me because of my dad’s experience. And I have a brother-in-law who’s a doctor so also, because of his experience working with people and seeing them frequently. So palliative care returns empathy to health care.

KM: Yeah.

PM: And it really starts with that one-on-one conversation and the communication and the relationship between a doctor and a patient. Like a true relationship, where you talk about what matters to you as opposed to what’s the matter with you.

KM: Right.

PM: And then the patient feels heard and respected. And then the palliative care doctor helps to create a treatment plan that honors the patient’s wishes for their health and well-being. And I think that the lesson palliative care has to teach the rest of the health care system is to slow down, to listen, to be empathetic and to realize that you’re treating a person and not a disease.

KM: Yes.

PM: When we treat body parts, we lose sight of the fact that we’re treating real people.

KM: At seven months pregnant, it reminds me very much of the kind of care that I’ve received from doctors. And I had a really great doctor, but I just switched to midwifery care, and I’m really glad I did because they actually sit with me and talk for longer periods of time. They’re really curious about a previous injury I had, or the fact that I’m in grief.

PM: Right.

KM: Or whatever it might be.

PM: Right, right. Your whole person.

KM: Yes.

PM: Yes.

KM: They’re taking that into account, and that is a part of what they should be treating.

PM: Right, right.

KM: They’re getting a better idea of what they’re treating. So …

PM: Yes, yes.

KM: … just that shift …

PM: Yes.

KM: … seems like something similar would be helpful throughout our health care.

PM: And doesn’t it seem so obvious that that should be a part of our health care?

KM: Completely obvious.

PM: It seems so funny.

KM: And it probably was people’s first intention. It probably was that way in the beginning.

PM: Right.

KM: More of a hand-in-hand healer.

PM: Right.

KM: Establishing a relationship.

PM: Right.

KM: And it has just gotten so far from anything intuitive.

PM: And it’s funny: I don’t know if it’s in the way that we train doctors, but I’m sure there’s room to improve that, to help with communication skills, to help with thinking about the patient as a whole person, right?

KM: Completely, and also how they’re treated.

PM: Right.

KM: My ex is a doctor, and we were together when he was in medical school. I was really shocked to see what he went through …

PM: Yeah.

KM: … and how he was treated. And when you’re treated as if you’re so unimportant …

PM: Right, right.

KM: … then it kind of spreads out, I think, as well.

PM: Yes, it’s interesting. I’m a lawyer by training, but in my past life I was, I think, a really good creative writer. In law school they taught me to write like a lawyer and to think like a lawyer so I could construct really great arguments, as in, “How do you prove this point.” And I think I had to relearn some creativity after a long period of time, because you were rewarded for thinking a certain way.

KM: Right. So you have a Pavlovian reaction to it.

PM: Right, and that’s what the law firms are looking for. And I don’t know, because I’m not a doctor, but I imagine there’s a similar process for medical students. And then somebody wakes up mid-career and says, “Huh, what happened to empathy?”

KM: Yeah.

PM: “This isn’t why I went to med school.” Right? “I came to help people.” And that may cause suffering, even for physicians and healers.

KM: Right. That makes a lot of sense.

PM: Yeah.

KM: You spoke at the end of your presentation about envisioning a more sane, healthy, whatever you want to call it, health care system. I was wondering if you would share with us what that vision looks like to you?

PM: I think it’s a lot more consumer-driven. I think it’s not one-size-fits all, but it’s trying to figure out a way to personalize health care and make it relevant to people at different stages of their lives. Whether it’s birth or being a new mom, to being a mom with two kids, it’s being present at each major phase of someone’s life. But it’s also being there in a way that doesn’t imply, “We’re smarter than you. We’ll tell you what to do,” but more, “We will honor you through your life journey, and we will help you navigate this complex system.” It’s fundamentally respecting people as intelligent whole human beings, and personalizing care according to what’s important to them.

KM: What effect do you think that would have on the patient and society as a whole?

PM: I think there’d be a greater sense of well-being, greater satisfaction for consumers, for family care givers and, ultimately, for clinicians as well.

KM: Yes.

PM: So I think we need to return empathy to health care.

KM: That’s a beautiful vision – and mission.

PM: Yeah. [laughs]

KM: Well, I’ll wrap us up, but I also wanted to ask, for people who don’t really know much about palliative care, who is eligible for it and who is actually receiving it?

PM: Well, anyone with a life-limiting or serious illness, such as cancer, heart disease, COPD can receive it. It’s best provided alongside of curative care early on in the trajectory of a disease, so it can ease the burden through serious illness. Also, for people who have been injured, let’s say in a car accident, and who are suffering and trying to heal, palliative care helps them in that process as well. So the other thing I would say is that palliative care is not limited to older people or people who are actively dying. Children can receive palliative care. New moms can receive palliative care. There’s neonatal palliative care, and there’s pediatric palliative care, and it requires a different approach. Kids are not mini adults. Kids with serious illness are dealing with different issues, and their siblings are affected, and their whole families are affected. So people are eligible at any age, any stage of a serious diagnosis or injury, and that’s it. It’s not like hospice, where people are limited to receive it if they only have six months to live.

KM: And what does it look like? I’m sure it looks different in different cases, and all of these cases are so different from one another.

PM: Yes.

KM: But overall?

PM: I think fundamentally it’s specialized communication skills. Communicating in a way that understands the whole person and what’s important to that person. It’s helping them to understand the different choices that they make, so they have informed choices about their care. And then it’s relief of pain and it’s symptom management that’s the burden of serious illness. So it’s helping people with either the pain that’s brought about by their disease or the pain that’s caused by the treatment.

KM: Mm-hmm.

PM: As you know, chemotherapy makes people really sick, so palliative care will help ease those physical burdens of the treatment.

KM: That makes sense.

PM: Yes.

KM: Wonderful. Well, the last question I often like to ask people is that if you have one wish for your own death, what would that be?

PM: Well, I’m going to go back to Justin and his talk this morning. I want to be greeted at the end of my journey by the people that love me and the people that I’ve loved. That’s my one wish. Yes.

KM: Thank you so much.

PM: Thank you.

KM: This was great.

PM: Thanks for taking the time to talk with me.

KM: You, too.

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