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.
Next: When is the right time and place?