When my father was healthy, he used to jokingly say that he would throw himself off the Golden Gate Bridge when he got old and too sick to care for himself. But, years later, when he was dying of metastatic melanoma, he didn’t talk about how or where he wanted to die with me or my brother. And, even though I was in Medical School at the time and should have known better, I didn’t bring it up either.
Luckily, his wife, my wonderful step-mother Toni, took charge. With the help of one of her other step-daughters, a nurse, she provided my Dad with comfortable, round the clock care. He died at home surrounded by people he loved and who loved him. For my family, despite the ravages of an unforgiving illness, this was a “good death.”
We were lucky. Although polls show that most people say want to die at home, however, most end up dying in hospitals, nursing homes, and other institutions. Of course, there are times when it is unavoidable. But there are other times when it occurs because the wishes of the person dying were not known.
The Conversation Project
A new project, spearheaded by Ellen Goodman and colleagues in collaboration with the Institute for Healthcare Improvement (IHI) aims to change that. Called The Conversation Project, its goal is “to make it easier to initiate conversations about dying, and to encourage people to talk now and as often as necessary so that their wishes are known when the time comes.”
The Project’s cornerstone is a website that offers visitors a Conversation Starter Kit and asks people to submit their personal stories to be shared at The Conversation Project and via You Tube, Twitter, and Facebook. The idea is to hear other people’s stories about the deaths of friends and relatives. And, to tell your own– hopefully normalizing the experience and making future conversations easier to have.
The Project does not judge what is a “Good Death” and what is a bad one. And it does not advocate for any particular type of end-of-life approach. Rather it focuses on people telling their loved ones about their end of life preferences.
I had an opportunity to preview some of the stories that appear on the site that just went live today, August 13, 2012. Each one is different. One tells the story of a detail-oriented dad writing to his daughter about all of his end-of-life issues, ranging from exactly what and where his assets were to which hymns he wanted to be sung at his memorial and exactly who was to give his eulogy.
Another is about an 86 year old mother of six who was lucky enough to spend 75 years with the man she loved. After he died at the age of 88, she decided she did not want to live any longer. She was 86 and living in a rehab facility. She asked her daughters to take her for a chocolate milkshake after his memorial. And then “she simply stopped eating and drinking.”
One person wrote about being willing to let her 80-year-old mom die without aggressive medical intervention she knew her mom did not want – because her mom had talked to her about her wishes. But her sister, who had not had the conversation about end of life wishes with said, “I am not ready.” The aggressive interventions were instituted and the mother survived the hospitalization and is now living, “her worst nightmare” of physical incapacity in a nursing home.
One man described visiting his dad who was dying from an inoperable brain tumor in his room in a nursing home. Although often unresponsive, that morning, he woke up and motioned his son to come close, asking him if he was going to get better. The son told him he wasn’t. The dad then told him he did not want to continue in this way and asked his son to tell the doctors he had had enough. The son did as he was asked.
Have you had the Conversation yet?
After reading these stories, I realized that although my husband and I have had advance directives for years, we have not had “The Conversation.” And, outside of joking remarks, like my Dad did with me, our grown-up kids don’t really know how we want our end-of-life experience to be. We are all going to be together at Thanksgiving. One of the things that is going to be on the menu of our favorite holiday this year will be a family discussion of our end-of-life preferences.