Why It Matters
" . . . [T]he COVID era has put a spotlight on the need for people of all ages and health profiles to think about the kind of care they might want if something unexpected were to occur."
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10 Years of Crucial Conversations Through the End of Life

By Kate DeBartolo | Thursday, April 7, 2022
Years of Crucial Conversations Through the End of Life Photo by taylor hernandez | Unsplash

As Senior Project Director for The Conversation Project (TCP), I often have the privilege of talking with people about some of the most pivotal moments of their lives. TCP is a public engagement initiative of the Institute for Healthcare Improvement (IHI). Our goal is to help everyone talk about their wishes for care through the end of life so those wishes can be understood and respected.

I once met a woman in Orlando, for example, who came up to me in tears during a lunch break in a Conversation Starter Guide session. Our team had been explaining how TCP aims to support a cultural shift towards normalizing talking about what matters most to each of us right now in our lives and in our health care, but also if something unexpected occurs in the future.

Visibly moved by the discussion, this woman said, “After listening to you, I realized that I owed my father a tremendous apology.” She shared his long list of health conditions and said, “My father had a rough night last night, and he wouldn’t go to the hospital.” She described how she and her family changed his mind.

“My siblings and I laid it on so thick,” she told me. “We called. We texted. We showed up at the house. We guilt tripped him about his grandchildren needing him.” She added ruefully, “Now I’m realizing he’s been trying to tell us what he wants, and nobody is listening.” By the time she had come up to speak with me, she had already texted her siblings. “We’re going to meet tonight,” she told me. “We’re going to have a better conversation this time.”

How It Started

TCP was founded 10 years ago by Pulitzer Prize-winning columnist, Ellen Goodman, after the death of her mother. Despite having a close relationship in which they talked about a wide range of topics and issues, Ellen was surprised by how unprepared she had been to make decisions on her mom’s behalf at the end of her life. She realized they had not had the kinds of discussions that could have helped them both.

When Ellen shared what happened with a group of friends, she was struck by the common denominator she noticed for those whose family members and close friends had a “good death” compared to those who had a “hard death.” No one’s experience was perfect, and they were all grieving, but it seemed to her that those who had experienced a good death had talked with those they trusted about what they wanted at the end of their lives. Those who witnessed a harder death shared a more complicated, complex grief over not having known the person’s wishes or because of family strife due to receiving mixed messages about their family members’ wishes. Ellen brought the idea of helping people to have these kinds of discussions to IHI. That is what started The Conversation Project.

How It’s Going

Much has changed in the decade since The Conversation Project was founded. For example, the COVID era has put a spotlight on the need for people of all ages and health profiles to think about the kind of care they might want if something unexpected were to occur. So many people, especially over the last couple of years, have suddenly faced situations in which they could not speak for themselves or had no time to tell those they trusted about the kind of care they wanted.

In the last 10 years, there has generally been less resistance to end-of-life discussions. There is much less talk about “death panels,” and there is more bipartisan support for issues related to serious illness and access to palliative and hospice care. Also, since Medicare Current Procedural Terminology (CPT) codes were approved in 2016, there has been increased use of CPT codes to reimburse clinicians for time spent on advance care planning. But we know there is room for improvement, particularly regarding equity.

There has also been a shift from focusing on traditional media to incorporating social media and social media influencers into efforts to reach the public. Some people are moved to action by seeing a news story from a nationally recognized source. Others are drawn to personal accounts from friends, family, and people we’ve grown attached to on the internet. We can feel deep affinity with a blogger we’ve followed for years who describes caring for an ill family member or someone on Instagram who talks about their experience with grief. We are not only listening to health care experts, but also context experts with lived experience to which we can relate.

TCP is working to shift the cultural norms toward more open discussion and acceptance of advance care planning and to provide tangible resources to support those conversations. In the last 10 years, it has been great to see people taking the initiative to spread these discussions in their communities. In addition to talking with those they trust about what matters most and identifying a health care decision-maker, more people are engaging their sphere of influence. Folks are talking to their friends or asking clergy members to share it with their faith communities. Financial planners are sharing TCP resources with their clients. This work is moving much further upstream to help people before a crisis.

We are also seeing much younger people engage in discussions about health care decision-making and what matters most to them. For example, it would be easy to assume that the people coming to the TCP website are older, but over the last few years, we have seen more than half of the visitors are under 45. High school, college, and health professions students are taking more classes and hosting more student-led sessions about the importance of these conversations. I believe that all these shifts over the last 10 years are contributing to real culture change.

Hopes for the Next 10 Years

I remember talking with someone from a health system in Memphis who said, “We’ve got 10,000 hospital employees in this city. If we can each have the conversation ourselves and normalize this, we can be the snowball that helps our community realize that talking about what matters to us now and at the end of life is an acceptable thing to talk about.” I hope more of these conversations  spread into community settings in the next 10 years of The Conversation Project.

I also look forward to learning more about the cultural nuances of these conversations. The TCP team has seen that cultural humility and curiosity have been key to recognizing both the uniqueness and universality of different beliefs and rituals. We have always said there is no single way to have these discussions.

I hope that people will continue to adapt TCP resources to their personal situation. And, while we do have all our tools available in English (including an audio guide), Spanish, and Chinese, we recognize that language translations alone are not enough. For example, a health system in California helped us understand that training interpreters to have conversations that might reference end-of-life is crucial. They had done a lot of work to train their clinicians to feel more comfortable bringing up conversations about what matters most. They had not, however, considered that 40 percent of their patient population did not speak English as a first language. The interpreters sometimes found these conversations overwhelming. They noted that it was difficult to provide word-for-word translation and requested specialized training to be better prepared. It will be great to see more of that in the coming years.

A hospital chaplain recently shared that they coordinated an event with 60 different faith leaders from 20 different faith groups to discuss preaching about the importance of end-of-life conversations and incorporating TCP resources (like the Conversation Starter Guide) into their pastoral care. They not only wanted to learn how to weave these discussions into their work, but also to understand these issues across denominations. We offer a lot of community-created resources for faith leaders and are excited about the adaptations folks have made to fit their communities.

Have you had these important conversations? Is there someone whose health care wishes you wish you knew? Do the trusted people in your life know yours? To learn more, download the Conversation Starter Guide or follow @convoproject on Twitter, Instagram, or Facebook.

Kate DeBartolo is an IHI Senior Project Director.

You may also be interested in:

The Conversation Project Resources for Health Care Professionals

What Matters to Me: A Workbook for People with Serious Illness

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