The Most Important Conversation You’ll Ever Have – Ellen Goodman
Ellen Goodman and her mother talked about every subject under the sun, except one: how her mom wanted to live out the end of her life. From time to time, when somebody they knew ended up on a respirator, her mother would say, in a heartfelt but offhand way, "If I'm like that, pull the plug." But when the time came, it wasn't that simple. As her mother descended into dementia in her late 80s and began to suffer the debilitating symptoms of old age, Goodman, a Pulitzer Prize–winning syndicated columnist, was left to make decisions about her care—decisions that often left Goodman herself feeling uncertain, unprepared, blindsided.
Shortly after her mother passed away at 92, Goodman cofounded The Conversation Project, a campaign designed to encourage people to have honest discussions with their loved ones about how they want to spend their last days—so we can all face death with a little more wisdom and grace. We asked her for some guidance.
Q: You know from experience what it's like when you haven't had the conversation. How did you manage?
It was just plain hard. Every visit to the emergency room or the hospital came with a barrage of choices about whether my mom needed another test or treatment. Finally, one day toward the end, I remember being at work on deadline when a doctor called wanting to know: Should he treat my mother's pneumonia with an antibiotic? I tried to fathom the question: Was this a matter of life or death? Could I call back? Frankly, I felt alone, but of course I wasn't. There are at least 39.8 million Americans caring for someone over 65, according to the Bureau of Labor Statistics.
Q. At what point did The Conversation Project take shape?
In the last years of my mom's life, I started talking with other people I knew who had been through similar experiences. One friend was dismayed that her husband died in exactly the sort of ICU nightmare he'd always feared. Another talked about the last-ditch battle with her siblings, each one arguing bitterly about "what Mom would want" but none of them actually knowing. The difference between a good death and a difficult death seemed to be whether the dying person had shared his or her wishes. So a group of my friends and colleagues—about a dozen of us in medicine, media, and the clergy—decided to come together and try to get people talking about this subject.
Q. Why don't we talk about dying?
Elderly parents and adult children often enter into a conspiracy of silence. Parents don't want to worry their children. Children are reluctant to bring up a subject so intimate and fraught; some worry their parents will think they're expecting or waiting for them to die. We often comfort ourselves with the notion that doctors are "in charge" and will make the right decisions. And we all think it's too soon to speak of death. Until it's too late.
Q. When is the right time and place?
Well, it's never too soon. That's one thing I'm sure of. The first place for the talk is not the doctor's office and certainly not the emergency room. It's at the kitchen table long before a medical crisis. If you're the parent, begin by having the conversation in your head, because talking it out with yourself will make it easier to approach your children.
Ask yourself: What central experiences color my hopes and fears for the way my life will end? Am I afraid that I won't get enough care—or too much undesired care? Whom do I want to make decisions for me if I'm not able? Do I want that person to follow my instructions exactly or do what he or she thinks is best? If I'm dying, would I rather be at home or in a hospital?
Imagine you are seriously ill, and finish this sentence about living: I want to live as long as I am able to...
Now finish this sentence about your death: I want mine to be...
If you're the daughter or son, you might want to begin by asking for advice. You can say, truthfully, "I'm worried about what might happen if you're ill and I have to make decisions for you. Can you help me?"
Q. Any other tips for broaching the subject?
Whether you're sharing your wishes or need to hear from your parents, start by bringing up a memory, a statistic, an article—even this one. Try to remember that these are not Grim Reaper talks. They're not discussions about what's the matter with you. They are about what matters to you. How you want the end of your life to reflect the whole of it. As many people have told us, these conversations produce rich moments of emotional connection. They bring us closer together. What's more, people who have had them tend to choose less aggressive care and leave their survivors less regretful and depressed. What a gift!
Q. What will it take to normalize these talks?
It's not easy to change a cultural norm, but women have done it before. We're the ones who transformed birth in America. It wasn't doctors who got rid of stirrups and welcomed men into the delivery room—we did it. Once people only whispered the word cancer. Now we march for cures. Women have been major change agents over the last half century, and in our new role as eldercare givers we can do it again.
At Sound Options, we are seeing this story repeat itself over and over in a culture that is afraid to even approach the subject of death. However, meaningful and intentional conversation has the power to infuse the last several years of our lives with the values, hopes, and desires we have had throughout our lives. Our passionate hope is that we can help families approach this conversation with their loved ones.
Published on January 28, 2013.