A Conversation with Ellen Goodman

Posted on January 8, 2013 by

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Ellen Goodman is a Pulitzer Prize-winning writer and activist. After her mother’s death, Goodman, co-founded The Conversation Project—an organization “dedicated to helping people talk about their wishes for end-of-life care.”

The Conversation Project recently launched a campaign to give the Gift of Conversation, where you can print or email an invitation to start end-of-life talks with loved ones. Interview conducted by Robyn Jodlowski.

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When I was moving through The Conversation Project’s starter kit, I was struck by how gentle the language was and how that made the conversation seem so easy to have. How was that document developed?

I came together with a group of colleagues and friends—who are doctors, care providers, clergy, media—and we began telling our stories of “good deaths” and “bad deaths” within our own circle of loved ones.

We talked about being faced with a cascading and confusing number of medical decisions where our uncertainty about the wishes of our parents, spouses and friends was a challenge. Since then, we have begun collecting similar stories from others—old and young, sick and well, siblings and friends, parents and children. These stories make it clear that having a timely conversation about one’s preferences for care towards the end of life can be an important predictor of a “good death”—one that respects those personal wishes. From these discussions came the ideas that spurred how the starter kit should look, feel and the information it should contain.

We wanted the language to be more human than medical and we wanted it to feel as easy as possible because this can be an intimate and hard conversation. People who use the kit do find it simple, user-friendly, and tell us that they have had some of the best conversations with their loved ones of their whole lives.

Introducing end-of-life conversations seems particularly difficult, seeing as people often don’t like to think about dying. Can we change that attitude or do you think only certain people are receptive to starting these talks?

Considering the fact that 100 percent of us will die, we clearly will all face death at some point. Yet, we often act as if this is not the case. As if death, though natural and a part of life, is not natural at all. But we are seeing that Americans are much more ready to have these conversations than ever before.

The Conversation Project aims to create a cultural movement and our goal is to normalize talking about death and dying in a safe space. Using a public campaign and shared storytelling, The Conversation Project seeks to narrow the gap between people’s unexpressed wishes and what actually occurs at the end of life. We are helping to change the cultural norm from not talking about end of life wishes to talking about them.

We believe that change can begin outside of a medical setting (a view that is shared by care providers and policy makers who have repeatedly encouraged us to go directly to the public). After all, many care providers remain untrained and uncomfortable in having such dialogues. In one typical state, only 17 percent of all patients reported talking to their doctors about their preferences. We believe that the first place to have the conversation is at the kitchen table and yes, we do believe everyone is receptive to these talks.

Our hope with this campaign is that everyone should know what is meant by the question, “Have you had the conversation?”—and that the answer is, “Yes.”

What do you think doctors and other healthcare professionals can do to facilitate end-of-life conversations?

Well, I think we can help doctors and healthcare providers. They aren’t always trained or comfortable in having these conversations. We hope they will encourage people to go to our project’s website. We also hope that we can encourage doctors to receive these conversations. We hope that healthcare professionals can make themselves “Conversation Ready”; they can begin the way we did, by having the conversation themselves with their loved ones and co-workers. That makes it easier to start these discussions with patients. And we hope they will begin early, long before there’s a healthcare crisis and long, long before they are in the ICUs! A crisis is a terrible time to learn and puts a real burden on the doctors, and nurses and social workers.

Why do you think it takes being personally affected by end-of-life issues to get involved?

In our current culture, we operate in silence surrounding death. There is a saying by Jane Walmsey in Brit-think, Ameri-think that says “The French think death is inevitable. The English think it’s imminent. The Americans think it’s optional.” But when a death occurs, or a loved one is diagnosed with a terminal illness, we remember death is inevitable. When an experience like this occurs, it helps people get involved, because they have been there. At some point in life, everyone will experience the death of a loved one.

How did you know when you had enough distance from your mother’s death to write about it?

I think what happened to me is that I started talking with others. I guess I thought I was the only one but in those conversations I realized that everyone has a story, that huge numbers of us are holding those emotional stories in our hearts, and that we need to share them. Finding others and sharing those stories is the core of our campaign.

You’re involved in such a variety of issues—women’s rights, granny activism, end of life conversations. How are the concerns of these movements interconnected? 

In some ways, they are all about social change. I belong to the generation that has been through the civil rights movement, the women’s movement, and now we are faced with the longevity revolution and all the choices and decisions that come with it.

What advice would you give to caregivers and family members in a situation where The Conversation hasn’t happened?

My advice would be to tap sources like the starter kit to help organize thoughts. This does not have to be formal and you don’t have to have all the answers at once. In fact, the conversation should be a series of discussions over time that continues to evolve as life circumstances change. One way to start thinking about end-of-life choices is to just complete this sentence: “I want mine to be…” It’s simple but a good kick-start to the conversation. You can also share the sorts of stories and letters that are on our website as conversation starters.

Do you think having these discussions with loved ones mitigates the grieving process?

Yes, certainly. We know from research that when people have had the conversation their survivors are left less depressed, less guilty, and less uncertain that they’ve done the right thing. It doesn’t change loss but it does make things easier for the survivors.

How do you define a “good” death?

I think everyone probably has their own definition which is the point.  What we hope is that everyone will express their wishes and have them respected so that they die in the way they choose, a way that fits their life narrative and what matters to them.

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Robyn Jodlowski is an editorial assistant at Creative Nonfiction and a recent graduate from the University of Pittsburgh’s nonfiction MFA program. She tweets @RoJoOhNo.

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