Today, seven years after my mother's death, I still ask myself, How is it possible that we never talked about it? My mom and I talked about everything. I once described her as a person who would talk about my problems until I was bored with them. Yet we never talked about how she wanted to live at the end of her life. It always felt too soon... until it was too late.
I'd felt alone in this, but I was clearly not. Everyone I spoke to later had a story - a story of a "good" death or a particularly hard death among people they loved. There was the wife whose husband died in intensive care, the daughter whose dad had final and futile rounds of chemo, and my favorite, the mother who had died her own way, in hospice, eating peanut butter and jelly sandwiches, talking peacefully about her life to the end.
In these stories, the difference between a good death and a hard death often rested on whether people's wishes had been expressed and respected. The sense of guilt, uncertainty - even depression - among survivors often hinged on if they knew how their loved ones wanted to live at the end of life. I began to believe that we could - and should - make this experience easier and more humane for the people we love and for ourselves.
One story led to another, and finally a small group of us who had experienced the loss of a loved one founded The Conversation Project (theconversationproject.org), a campaign to change the cultural reluctance to discuss end-of-life issues, so that everyone will have honest conversations about their preferences when it comes to end-of-life care. Our goal is that these talks take place at the kitchen table before there is a medical crisis.
Today, surveys show that too many people are dying in ways they would not have chosen. Some 70% of people say they want to die at home, yet 70% die in hospitals and institutions. A majority of people say it's extremely important to make sure their family isn't burdened by hard decisions, yet a majority haven't shared their wishes. Parents and adult children often engage in a conspiracy of silence to "protect" each other from the reality of dying.
But I'm pleased to say that thousands have downloaded and used the Conversation Starter Kit. They've brought it to their book clubs, family gatherings, and church groups, and have told us the talks they began were not grim and frightening at all, but among the richest and most intimate of their lives. In my own family, too, I've had deep, emotional talks with my 94-year-old uncle about his wishes and with my 45-year-old daughter about mine, talks that have left us closer and more prepared.
By Ellen Goodman