Ellen Goodman described the painful experience and difficult decisions she had to make when dealing with the death of her mother in a recent New York Times opinion piece, “How to Talk About Dying.” She said she felt unprepared to make the decisions she was asked to make when her 92-year old mother could no longer decide for herself. Goodman mistakenly believed that the doctors would handle everything and would tell her what needed to be done. But she has since realized that healthcare providers are just as likely to be uncomfortable and untrained on these types of conversations.
Motivated to do something to help those who will face this situation (and we all will), the former Boston Globe columnist decided to create The Conversation Project, an initiative to help people talk about their wishes for end-of-life care. The purpose of the project is to help alleviate an all-too-common scenario: “Too many people are dying in a way they wouldn’t choose, and too many of their loved ones are left feeling bereaved, guilty, and uncertain.” The Conversation Project is a nonprofit organization and has partnered with the Institute for Healthcare Improvement, a not-for-profit organization dedicated to improving healthcare throughout the world.
The Conversation Project website has some astounding statistics among surveyed Americans that reflect the need to start the conversation on dying:
- 90% say it’s important to have end of life discussions with loved ones, but only 27% actually have had that conversation.
- 80% say that they would want to talk with their doctor about end-of-life care if they were seriously ill, but only 7% have done it.
- 82% say it’s important to put their wishes in writing, but only 23% have done that.
- 60% think it’s extremely important that their families aren’t burdened with difficult end-of-life decisions, but 56% have not told anyone their end-of-life wishes.
The statistics from The Conversation Project’s 2013 survey prove that too many people aren’t talking with their loved ones about these issues. The website offers a Conversation Starter Kit with downloadable forms and information. Some examples of the type of questions the project asks are to rank on a scale from 1 to 5: “I want to live as long as possible, no matter what” to “Quality of life is more important to me than quantity.” Proof of the project’s growing success is that almost 200,000 visitors to the website have already downloaded the kit.
By encouraging families to start early having the end-of-life conversation before there is a health crisis, Goodman is hoping to help others have an easier time than what she had, making healthcare decisions for their loved ones. “We believe that the place for this to begin is at the kitchen table–not in the intensive care unit–with the people we love, before it’s too late,” she explains.
Recommended Reading: The New York Times’ The End series features essays by people who work in fields dealing with death and dying. Some topics include medicine, ethics and religion, as well as personal essays by those who have experienced the death of a loved one.