With National Healthcare Decisions Day on April 16, 2018, it’s important for families to feel empowered around advance care planning. You don’t have to be seriously ill to begin the conversation with the people who care about you; talking about your goals and wishes takes the guesswork and guilt away from anyone acting on your behalf.
Joining us in this episode of HealthChangers is Ellen Goodman, the co-founder of The Conversation Project, which is dedicated to helping people talk about their wishes for end-of-life care. The Conversation Project began in 2010 when Ellen Goodman and a group of colleagues and concerned media, clergy, and medical professionals gathered to share stories of “good deaths” and “bad deaths” within their own circle of loved ones. It was their stories that started a social change around the kitchen table, not in the intensive care unit—with the people they love before it was too late.
Leslie Constans: Welcome to the HealthChangers Podcast presented by Cambia Health Solutions, where we share real stories of health care transformation from those experiencing it and those helping to make health care more personalized. I'm your host, Leslie.
April 16th is National Healthcare Decisions Day. It's a day intended to educate people about advance care planning and to empower them to talk with loved ones about their wishes for end of life care. Starting this kind of conversation may feel tricky or uncomfortable, but my guests today on the podcast say these talks can bring peace of mind for everyone involved. I'm really excited to welcome Ellen Goodman. She's a former syndicated columnist and the founder and director of The Conversation Project. Welcome, Ellen.
Ellen Goodman: Thank you.
Peggy Maguire: Well thanks for this opportunity.
LC: Ellen, I'd love to just start with you and ask if you can share the story or your experience in starting The Conversation Project.
“I knew that social change often happens when people tell their stories.”
EG: The reason that I started The Conversation Project grew out of my experience with my mom. My mother and I were very close. We used to talk about everything. I once described her as somebody who would listen to your problems until you were bored with them. But the one thing that we had never talked about was how she wanted to live at the end of life, the health care she wanted, the treatment she wanted, the treatment she didn't want. And toward the end of her life, she had dementia and she could really no longer say what she wanted for lunch, let alone what she wanted for health care. All those decisions fell to me. And I was stunned. I was blindsided. I had no idea that I would be making those kinds of decisions. And often in the course of treatment, I wished I could hear her voice in my ear. I wished that I had had these conversations with her about what mattered to her.
And when she died, I began to do what women often do, talk to other people and lo and behold, so many of us have had the same experience. Experience of good deaths and hard deaths. So many had stories to tell. And to me, it was fascinating in many ways, because as somebody who had covered social change, I knew that social change often happens when people tell their stories. You know, the women's movement, the civil rights movement, the gay rights movement, you know. People felt alone with their stories for a long time. It was only when they shared those stories that change happened. And I felt that way, that this change, this incredibly powerful, personal, and often painful experience would only change as we began to share our stories and as we began to talk to each other.
LC: That's a powerful story in and of itself. So, do you see The Conversation Project as a platform for sharing those stories and having those conversations?
EG: Well we started by sharing our stories and I remember the first meeting that we had, we had a small group of people because we had said, "Come, surely we can make this better." And the group of us who were media and clergy and medical people sat around a table and we each took off our professional hats and told the stories of our loss. And then we did say, "How are we going to make this better?" And some of it was through storytelling. Some of it was through creating, some of the tools that we created a conversation starter kit that was for people, not for doctors. We realized that what we needed to do was to get people to the kitchen table to talk to the people that they loved and that was critical. And we understood deeply the kind of taboos this had. You have to remember, The Conversation Project started right at the height of death panels. I know Peggy, you remember death panels.
EG: The very idea that if a doctor talked to you about how you wanted to live at the end of your life was somehow a death panel became a real national threat. And we said, "We can turn that around. That's not fair. It's not true." The kindest thing that we can do at the end of life is to make sure that the people we love have the death that they would choose. Live toward the end of their lives in the way that they would choose.
“71% of them were not familiar with the term palliative care or what person-focused care meant.”
LC: Peggy, I'd like to ask you, what attracted the Cambia Health Foundation to the work of The Conversation Project?
PM: First, Ellen, you know her passion for this. Her track record as a journalist and her commitment to social change, both of writing about it and then pursuing it. Secondly, you know, we shared Ellen's view that health care is incredibly personal and that culturally we need to be sharing stories and we need to be talking about health care in a very personal real way as opposed to an institutional focus. I think in terms of our commitment to social change, we really like the simplicity of Ellen's message and the consumer orientation.
You know the basic premise of The Conversation Project is that everyone's wishes will be expressed and respected. And one of the ways I think a foundation like ours can influence social change is to fund research that uncovers consumer attitudes and consumer needs. And you know during those death panel conversations we did partner with The National Journal to do a consumer survey of 1,000 Americans. It was a little bit after the political rancor had died down.
But we surveyed 1,000 adults about their understanding and their wishes. And you know 71% of the people that were surveyed said to us that it was more important to enhance the quality of life for seriously ill patients than to extend life by any means. 71% of them were not familiar with the term palliative care or what person-focused care meant. But after learning that palliative care is an extra layer of support that supports individuals and their families when they're going through serious illness, 97% of the people surveyed thought that it was important and that more conversation would help them understand their choices.
So as a result of that research we were looking at ways to increase consumer awareness about palliative care and the benefits of palliative care and really to put consumers in the driver seat of their own health care experience. I mean the timing was incredibly fortuitous that we found Ellen at a time when we were looking to invest in consumer awareness campaigns. Ellen has talked about to me the double helix of change that you really have to create real change you have to insight culture change so you're imposing change from the outside into the health care system. But you also have to be focused on changing from the inside out.
We had already been investing in changes on the health care delivery side. We funded a number of hospital-based palliative care programs in our region and our signature Sojourns program to invest in emerging palliative care leaders to develop a future palliative care workforce. The Conversation Project is a perfect compliment to this double helix approach.
"You know what…it’s not just a medical experience. It's a human experience."
EG: I'm just going to jump in because it was fortuitous for you Peggy, really fortuitous for us because not that many people got it. I mean, we're in the culture change business, as you say. And the model that we always used for how the medical culture changes, has been the birthing model. Which was, you know a generation or two ago now, when you had ... It wasn't doctors who said, "Oh, please come into the quote birthing room. Let's have the baby in the bathtub. Bring your husband. Bring your camera." It was not doctors who said this, I assure you. It was people who said, "You know what, giving birth is not just a medical experience. It's a human experience." And we wanted to say that, "You know what, dying is not just a medical experience. It's a human experience."
LC: Ellen, it's been five years since you founded The Conversation Project. What have you learned?
EG: I'd say the beauty of this and we recently had a convening, Peggy, that you supported and you were there. And the people in the room, we now have a huge field operation and the cream of that field operation came in the room. And to me what was so wonderful, here we are in the midst of a political turmoil. A hard-political time where people are questioning whether you can make change. And all of the people in this room are creating change. And they're feeling like they are empowered to make life better for the people that they care about, whether it's their family or their patients or their community members. And that was so energizing for me and for all of them, that feeling that, "You know what, we can make something happen." And we are making something happen in terms of how many more people are having these conversations with the people they love. That we're breaking through some of the taboos against talking about death and dying. All of those things are really critical, particularly in a time when people often feel that they are powerless.
So that was just on a very kind of personal level that's been very meaningful to me. And then, you know, some of the other ... Just to see some of your successes is always lovely and I think we've had a ... Well, everybody, there are so many people who worked and are working in this field but we've had this capacity to help everybody, to give them some tools and some energy and some leadership and that has also been very rewarding. And we do some stuff that's just plain fun. Fun is not the word that you would ordinarily associate with the end of life care. But we have a media strategy that includes doing videos that are energizing and provocative and edgy. And we have our other toolkits that have been really highly adopted and we now have about 400 different groups in about 46 states who we help to do the work on the ground that they are doing to make this cultural change.
“...It's important to have a conversation at the kitchen table when you're not in crisis. It's about relationship building and quality of life."
PM: Yeah, It's really amazing. You know, one of the things I love about The Conversation Project is this idea that it's important to have a conversation at the kitchen table when you're not in crisis when you're not facing a medical emergency. So that you really are prepared when you do get into that state or someone you love or are caring for is in that state of a health crisis or emergency, that you know beforehand that you are serving them to the best of your ability because you've had the conversation at the kitchen table instead of in the ICU. And I think, on a personal level I think that's very powerful. I know my husband and his family downloaded the conversation starter kit and actually, at a Thanksgiving, the Friday after Thanksgiving holiday, we all sat down and went through it. And I think it changed the course of his life.
And I don't think it's bad to use the word fun, because I think all of this is aimed at increasing the quality of life for people who are living with a serious illness until they take their last breath. And I think fun should be part of it. It's about relationship building and quality of life.
LC: I had a question for both of you. I have you here on the podcast because of National Healthcare Decisions Day. I know each of you has taken part in The Conversation Project workshops and Peggy, you talked about going through it with your family. Can you share some stories of what you've heard from people who have gone through this process? Basically, I'm thinking people who haven't had these types of conversation might be curious to hear what happens when you actually sit down and talk.
EG: We hear stories from people who have been in either at events or just at dinner or at holidays and have heard stories from people they know and from complete strangers coming up to them and saying, "You know, if I hadn't had that conversation, I would not have known what to do. And it would have made all the difference." And it particularly makes all the difference to survivors, because we know that when people have not had the conversation the survivors are more guilty and more depressed and a lot less certain about whether they've done the right thing. And I think in some ways those personal stories are what sustains the work and makes us think about what we can do next to reach more people.
LC: Yeah, I think as we started out this conversation talking about how personal health care is, every person you talk to has a story. Every person has either been a caregiver or has been cared for or will be cared for in the future. You know, all of us will live until we take our last breath and the idea is to be able to define what quality means to you, even if you're living with serious illness. And as Ellen said if you are caring for a seriously ill individual, whether it be a parent or a spouse or a child, it is so much easier on the caregiver to have had a conversation where they fully understand what the person they're caring for wishes as opposed to trying to figure it out at the moment. Right, so I think this is really about the ability to have conversations in advance of an emergency, I like to think of it as a gift that families give each other.
EG: And I think families think of it that way.
EG: They think of it as a gift. You know, a lot of people say that they're reluctant to have these conversations, or it's too soon, or something else. And yet when they have them, they almost universally report feeling at ease, feeling closer and that these are some of the most intimate conversations they've had, just as Peggy was talking about her husband's family, and I think that is true. You know, because of being in The Conversation Project, I've had many more of those conversations with my own closest circle of friends and family. They're trusting conversations, too. That really matters when you're facing a crisis, to have someone you can trust to really tell what you're thinking about and what you're worried about and what you're afraid of. That is just critical.
“We're [creating] a health care system that is more focused on what matters to people, rather than what's the matter with them.”
LC: When you think back over the last five years, are there some accomplishments that you're particularly proud of?
EG: Well, I suppose I never thought a million people would have used our conversation starter kit when we began. So that's a pretty big number and it's growing all the time. And I don't know that I thought we would have all these communities. We developed a community strategy because we're a small team and we knew we couldn't run a national campaign all on our own, out of our own little office. And after we launched The Conversation Project, to our surprise, we started hearing from all these other people, "Can you bring The Conversation Project to us?" And we said, "Well, what can we do? We can't do that. What can we do?" And we decided to bring The Conversation Project to people where they work, where they live, and where they pray. And we created this community strategy where all these communities can call in and we connect and we, with your help, created this kind of how to guide for communities that wanted to bring the conversation to their own people.
PM: Well, for me, it's just been such an honor working with you and supporting this work and seeing how it has grown in unexpected and unanticipated ways. You know, it always goes back to that bottom line of, we're empowering consumers to take charge of their own health and we're trying to create a health care system that is more focused on what matters to people, rather than what's the matter with them.
LC: Well, with Healthcare Decisions Day coming up on April 16th, what would each of you recommend to our listeners that they can do to take that first step?
PM: Well, first if you haven't gone out to see The Conversation Project's website, go out and look at that website. It is incredible. They have a lot ... You can download the conversation starter kit for free, in multiple languages. And also, there are a number of other resources that are on the website that I think people would find helpful.
LC: How about you Ellen?
EG: I was going say make a commitment to talk to people you're close to. It doesn't have to be that day, but to write to somebody. You know we have all kinds of ways of starting these conversations, including the one that seems to work well for adult children and their parents. They're elderly parents often don't want to worry their adult children. Adult children don't want to suggest to their elderly parents that they might ever die. And we have found, for example, saying to your parents, "You know mom, I need your help." And that puts the parent in the parent role, but also, it's a rare parent who can say, "No, no, no, I'm not going help you. So, to say, "I need your help. I may have to make decisions for you and I need to know what it is that you want." Or to start a conversation to think of ways to start the conversation, use National Healthcare Decision Day to think of ways to start the conversation. Like, you know to say, "Do you remember what happened to Aunt Susie. How do you feel about that? What should we do?"
And then also, I think critically to take the action of choosing someone who will make decisions for you if you can't make them for yourself. And have a conversation with that person. Whether it's a member of your family or a member of your congregation, whoever it is. To find someone who can make decisions for you and share your wishes with that person.
LC: Great advice. Peggy and Ellen, thank you so much again for joining us today on the podcast to share the importance of having that conversation with your family and the people you are close to. It's been a really valuable conversation, I hope others will join and take a look at The Conversation Project website and all the resources available to them. Ellen, we really appreciate your time. Thanks for joining us.
EG: It was a pleasure.
PM: Yeah, thank you, Ellen. It's been a great partnership, and we really appreciate your taking time for this conversation today.
LC: And thank you, Peggy, also for helping moderate today.
PM: Thank you.
LC: Thanks for listening to this episode of Health Changers. You can find more information on all of our episodes at cambiahealth.com. You can also follow us on Twitter @cambia. Please subscribe to HealthChangers on iTunes or Stitcher and leave a review. Thanks for listening.