How to Start a Conversation About Dying — An Interview with Kate DeBartolo, Director of the Conversation Project
Kate DeBartolo is the Director of the Conversation Project, an initiative of the Institute for Healthcare Improvement (IHI). We spoke over the phone early this year.
Can you tell me about your personal journey to focusing on dying and end-of-life care?
I’ve worked at IHI (Institute for Healthcare Improvement) for 12 years, facilitating large scale adoption of best-practices in a clinical setting, so I had already dealt with a variety of healthcare topics before coming to the Conversation Project. Now I’ve been doing this six years, and I love the topic. I’m drawn not only for the experience of the person who dies, but how to live in those final years and how to support the bereaved.
There are also so many fabulous nurses and others working in this field. Addressing our mortality. They are such kind people.
Tell me about the Conversation Project, how it started, and what its mission is.
The Conversation Project was founded by Ellen Goodman, a Pulitzer-Prize winning columnist, who was the caregiver for her mother, who was unable to speak for herself in the final years, and who had never discussed her wishes for end-of-life care. All the decisions fell to Ellen.
After her mother’s death, Ellen got together with her peers, her colleagues in the media, along with healthcare and religious leaders, and learned that, unfortunately, her experience was not unique. In her conversations, she noted there were differences between what people called “good death” and “bad death,” and having conversations about end-of-life care was a common characteristic of the good deaths.
That’s when she came to IHI with this project. IHI is a nonprofit focused on how to improve health and health care worldwide. The Conversation Projects approaches things from two sides — we hope all wishes are expressed and respected.
So the patients have to say what matters most to them and the institution should respect what they say. Improvements depend on both parties.
We do not have a preference for a particular kind of care. But the idea is that we have these conversations, as Ellen says, around the kitchen table, not in the ICU. Doesn’t have to be the kitchen table, and maybe we should have called it the Conversations Project because it’s usually a series of conversations. We help people start them wherever they are.
We provide starter kits to help people get ready for the conversation. There are questions to help clarify what you want at the end of your life, and identifying who you want to talk to and when and where would be most conducive.
One way to break the ice is a simple statement: “I need your help with something.” Or, “I just answered some questions about what matters most to me at the end of life, and I want you to see my answers.” The important thing is to get started. Ellen also says, “it’s always too soon, until it’s too late.”
I signed up for your email list this morning and got an introductory email with a link to your starter kit. One thing that struck me was that 92 percent of people feel like having this end-of-life conversation is important but only 32 percent have it. Why do you think that is? How do we make that number higher?
The good news is that number has shifted. Not long ago, it was 27 percent. We’re talking about adults, over 18. So that means 12 million more Americans are having that conversations than a few years ago.
Why do you think so many are not having that conversation? To an outsider, it seems like there’s so much more going on with this end-of-life movement than there used to, but it also seems like it’s invisible to the mainstream society.
There are a variety of reason. One is they don’t want to offend people. Or they have other things that are more pressing. They may imagine it’s something they have to get an estate attorney to deal with.
There’s a growing movement, but there are also reasons that it’s now more acceptable than it’s been.
Remember the death panel framing from the 2008/2009 debate about the Affordable Care Act? That was in reference to policies that would allow Medicare to reimburse clinicians for conversations with patients about their wishes for care at the end of life.
Those conversations are covered by Medicare now, with bipartisan support. The popular culture is spreading the word — best-selling books like Being Mortal and When Breath Becomes Air. The short films Extremis and End Game were nominated for Oscars.
Baby boomers are seeing what is happening with their parents and they have opinions on whether they do or don’t want similar care for themselves. Keep in mind, too, that it’s only in the past few decades that we’ve had the technology to allow us to make many of these decisions. We aren’t well-versed in these conversations, because we didn’t used to have much say in the type of care we would receive.
I’m very much a supporter of your approach, and getting people to talk about death. But is there evidence to support that?
Absolutely there is. Now more than 50 percent of people who have these conversations report feelings of release and comfort. And it’s not just the person dying who benefits, but their loved ones too. Depression rates are lower after the loss of a loved one if they’ve had the conversation.
We do note that this topic historically resonated more with higher income, higher educated individuals, and we’re working to not further that divide.
How are you doing that?
One way we’re addressing that is to be sure that our team is representative of the audience we’re aiming to reach.
There’s been this progression from doing thing to, for, and now with. It used to be medical professionals did things to patients, then it shifted to for patients. Now we’re trying to make it with patients.
We now say here’s what I’m doing with you, not for you.
We’re also having conversations with the disabled community to make sure we’re getting it right for them.
I watched the video of Ellen Goodman talking about the genesis of the Conversation Project and how the experts you brought in said you needed to get outside the medical community into the broader culture and change the norm from not talking about the end of life to talking about it. How are you doing that?
For us, there are three approaches. One is building awareness with the public through traditional media, social media, podcasts, and so on. We keep trying to make our project more visible.
Second is we provide content and tools about related issues, like dealing with dementia. We have various questions to help figure out what people want. Like, on a scale of 1 to 5, are you concerned about too much health care, or too little care?
Third is we reach people where they live, work, and pray. We bring it to local libraries. We connect with regional leaders who can translate it to their area. We do a lot of work with religious congregations. And we do a lot of training. People learn from other people, then share it.
Another way is to not start with talking about death, but talk about what kind of life you want. How do you want to live your life as you approach the end? A lot of people understand the concept of health care proxy. If something unexpected happens to you, who’s going to speak for you? Do they know you want? Do you know what you want?
Sometimes it might be chocolate ice cream. One woman who was caring for dad, asked him what he wanted. He said as long I can watch college football and eat chocolate ice cream, I want to stick around.
(This ice cream and football quote, Kate said, should be attributed to its original source — Being Mortal, by Atul Gawande.)
—
Find out more at theconversationproject.org.
Recent Comments