Ellen Goodman is one of our most wise and most widely read columnists. She's a Pulitzer Prize winner and was the first to open up the Op-Ed pages to women's voices. In 2010 she founded The Conversation Project to help people initiate conversations about dying with their loved ones, and to encourage people to talk with their loved ones about their end-of-life wishes.
TARA MOHR: You've talked about how you are working on creating social change around our end of life conversations with the work you are doing now. What's your sense of how social change happens, and how has that informed The Conversation Project?
ELLEN: Probably the most powerful engine of change is when people discover what they already know. If that sounds paradoxical, it's not really. It's when suddenly it becomes clear what [you] have known at some level; it's what you've long known was screwed up. You learn it again. It's articulated [and shared] in different ways.
My generation went through a lot -- we were the change agents of our culture with the women's movement. There was the Civil Rights movement. There was the gay rights movement. Now, we're facing what you could only think of as the longevity revolution. We are living longer lives. That's the good news. Along with all the exhortations -- like 50 is the new 40 -- there is the reality that 50 is the new caregiver of the 75 year olds; 60 is the new caregiver of the 85 year old.
Along with technological and medical changes that have allowed us to live longer, this revolution has also meant that end-of-life now comes with a series of decisions that have to be made by you and the people you love. Sometimes the decisions need to be made by you for the people you love. For a long time people were holding the stories of this inside their own hearts.
There are a huge number of stories of people who have been through hard deaths or good deaths. At some level, the difference between those good deaths and those hard deaths is whether people have shared their wishes for their end of life and whether those wishes were respected.
We founded The Conversation Project on the basis of storytelling. We want to make it easier for everybody going through this from now on, because we know that if there is one thing that everybody in this wide, diverse and sometimes contentious world shares, it's their mortality. That is something that all of us will go through with the people we love and then ultimately with ourselves.
TARA: What was the seed of inspiration for this project for you?
ELLEN: For me it was a story. It was [the] story of my mother's death and the long period preceding her death, when my mother was no longer able to decide for herself what she wanted for lunch let alone what she wanted for healthcare. I was faced with a huge number of cascading decisions to be made; I felt totally blindsided and unprepared. Nobody said I would have to make these decisions for my mother. Yet, it became clear that I was the designated daughter. When my mother died, I began to talk to other people, which is what do women do. We form a group.
I formed a group with men and women -- some medical people, some clergy, some media people, social workers. The first thing that our small group did when we came together was to take off our professional hats and talk and tell our stories. That was a very powerful beginning. Gradually, from there, we moved to create a national campaign, a public engagement campaign to help make it easier for all Americans to have their wishes expressed and respected.
TARA: I'm really fascinated by [the idea] of professional hats and returning to stories. Women [can] get so stuck in thinking that they need to have a lot of deep, formal expertise or degrees in order to make change, when in fact their most powerful ideas are coming much more from their [own] experience.
ELLEN: I think that's right. I think in this case people assumed that end-of-life choices were enhanced at the medical profession and that in fact doctors would begin those conversations at least, but often make those choices. In fact that medical professionals are often reluctant and uneasy having these conversations.
We've discovered that for example in Massachusetts only 17 percent of people have had end-of-life conversations with their doctors and in California only 7 percent. We also know that people are not dying in the way they would choose. 70 percent of people say in surveys that they would like to die at home surrounded by their loved ones but 70 percent of people are dying in hospitals and institutions.
Dying at home isn't necessarily about a geographic location. It's an idea. It's a sense of comfort surrounded by people who care about you. We said, "Yes this change has to come from the outside in. You are the expert on you. You are the expert on your family. You know what happened to your parents, to your siblings and that you have to bring this change into the system."
The model is similar to how women changed birth a generation ago. The doctors weren't the ones that said, "Oh, yes please. Bring the video camera into the birthing room. Let's have babies in a bathtub. Don't put your feet in the stirrup. Let's have a warm and engaging lovely event." It was basically parents, especially women, who said, "This is what's right. The experience that I had giving birth shouldn't be that way." They're the ones who changed the system from the outside in.
We think the same thing is happening with the end-of-life experience.
TARA: Many women would look at your bio and think, "She hasn't had any issues playing big!" Do you struggle with self-doubt? Do you struggle with a voice of "Who do you think you are?"
ELLEN: Show me somebody who doesn't have self-doubt and I'll show you somebody who's faking it -- serious repression or either narcissism or something. There's probably some sort of a disease for people who don't have self-doubt. Everybody does -- particularly if you're trying to express and articulate issues of the time...
TARA: What advice would you give to a woman who has the sense that she's playing small and who wants to play bigger?
ELLEN: I often think of Eleanor Roosevelt's wonderful line of "Everyday do something you fear." You want an example of somebody who went from playing small to playing big! She was a woman who was very shy and fearful. Teach yourself by taking risks. Always say, "What's the worst thing that can happen? If I speak up for myself, what's the worst thing that can happen?" A lot of what life is about is speaking up for yourself. You're only going to ostracize the people you don't want to play with anyway.
TARA: I call this going for the gasp -- doing the things that actually make you gasp a little like, to get your adrenaline flowing.
ELLEN: Short of burlesque. Short of posing something on Facebook that you will regret the rest of your life.
TARA: Yes -- not any gasp but the gasp that furthers your own playing big in the world.
ELLEN: Exactly. Something that matters to you. I moved from observing social change to trying to enact social change through The Conversation Project really because I thought, "What matters?"
What mattered to me was that people's end-of-life wishes would be expressed and respected. We can have a much more humane way of dying than we do right now.
On our website, we have a starter kit, a guide, that makes it easy for people to have the conversation with their loved ones.
A lot of people think, oh my God, they're not going to want to hear this. We give a lot of ways to start the conversation in a way that people can listen. We know from the experiences people share that these conversations are some of the richest ones that people in the family have ever had. They have been tremendously rewarding.
TARA: Thank you Ellen so much for joining us and for sharing your wisdom and for spreading the word about the conversation project and for bringing that into the world.
ELLEN: Thank you Tara for doing this. I appreciate it very much. You are doing great work in the world.
This was Part 2 of my chat with Pullitzer prize-winning columnist Ellen Goodman. You can read Part 1 here.
To learn more about The Conversation Project, click here.
Tara Sophia Mohr is an expert on women's wellbeing and leadership. A coach, writer and teacher, she is the creator of the global Playing Big leadership program for women. Visit here to get Tara's free guide, the 10 Rules for Brilliant Women Workbook.
When an ill person brings up subjects that make you feel uncomfortable, it's natural to want to squelch the discussion or rapidly change the subject. However, it's very important to listen unselfishly and avoid responding with, for example: "Let's not get into that right now. Can't we discuss something more pleasant?" or "Do you really think it's helpful to dwell on this topic?"
Whether the patient asks a spiritual or theological question that catches you off guard or she wants to know about the side effects of a medication, it helps to learn how to be noncommittal without seeming evasive. You don't want her to think that you don't care or that you're hiding something, and you definitely don't want to offer misinformation that might do more harm than good.
Even for people who weren't very spiritual or religious throughout most of their lives, it's natural to experience spiritual anxiety during a serious illness. And it's also natural for this anxiety to lead to questions that caregivers might find difficult or even overwhelming. If your loved one asks, for instance, 'What's next? Will prayer help? Why did God let this happen to me?' it's best to call in a qualified cleric.
Just as most of us are not comfortable with chronic illness, we are also not comfortable with crying. When tears appear, we tend to whip out a tissue and murmur something along the lines of, "It's okay. Don't cry." From now on, continue to pass the tissue when your ill loved one starts to tear up, but don't pressure him to stop sobbing. Tears are a natural emotional release for emotions ranging from anger to sadness to fear, and can be very therapeutic.
When your loved one is uncomfortable, upset, or worried, you might be tempted to utter platitudes like, "Everything will be okay," "I know how you feel," "God has given you a long life," or "It's God's will." While we hope that these phrases will be a quick fix to problems we'd rather not deal with, the truth is that they're trite and meaningless. What's more, sugarcoating reality doesn't fool most people, and it certainly doesn't spark positive change.
Anger is a natural human emotion, and it's important to recognize that chronically ill people have a lot to potentially feel upset about. Understandably, many patients are angry that they are so sick. Plus, their pain and energy levels might make them less patient or less able to handle stressful situations. Therefore, it's not unusual for caregivers to be on the receiving end when their loved one's fuse blows for any reason.
Understanding how and why an illness is getting worse and more painful is intellectual. But experiencing it is a very visceral and emotional thing. The patient needs for you to connect with him on a heart-to-heart, gut-to-gut level, not just a mental one.
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