Only as her mother lay dying did Ellen Goodman realize she'd never had a real end-of-life conversation with her. By then, it was too late. Her mother was suffering from dementia.
The Pulitzer-Prize-winning columnist wrote:
“The only conversation I had with my mother—and this is often true of people—is when she would see someone and say, ‘If I'm ever like that, pull the plug.’ But there was no plug to pull.
After all the years I'd written about these issues, I was still blindsided by the inevitable.
The last thing my mom would have wanted was to force me into such bewildering, painful uncertainty about her life and death. I realized only after her death how much easier it would have all been if I heard her voice in my ear as these decisions had to be made. If only we had talked about it.”
In 2010, Goodman and some colleagues—along with media, clergy, and medical professionals—gathered to share stories of the "good deaths" and "bad deaths" among their own loved ones.
Their exercise launched The Conversation Project, a movement meant to give families the tools to broach the difficult, emotional topic of end-of-life discussions.
Gap between what we say we want and what actually happens
The Conversation Project prompts us to think about having "the conversation" by citing these findings:
- 60 percent of people say making sure their families are not burdened with tough decisions is "extremely important," but 56 percent have not communicated their end-of-life wishes to their loved ones.
- 70 percent of people say they prefer to die at home, yet 70 percent die in nursing homes, hospitals or long-term care facilities.
- 80 percent of people say, if seriously ill, that they would want to talk with their doctor about end-of-life care, but only 7 percent report having had an end-of-life care discussion with their doctor.
- 82 percent say it's important to put their wishes in writing, while 23 percent have actually done so.
Medical technology increasingly results in tough and costly choices
While 70 percent of us would prefer to die at home, half of us die in hospitals, often wired to machinery in intensive care units. One-quarter of Medicare's budget is spent on treatment in the last year of life. Of that, 40 percent is spent in the last 30 days.
But an increasing number of people are opting for palliative care and a more natural death at home or in hospice.
A 2010 study in the New England Journal of Medicine reported that patients with newly diagnosed metastatic lung cancer who received palliative care with their cancer treatment suffered less depression, enjoyed better quality of life, and lived three months longer than those who received standard care alone.
But getting something other than conventional care probably won't happen unless patients have "the conversation" with doctors and family.
Starter kit for "the conversation"
The Conversation Project aims to help break the "conspiracy of silence" at the end of life: parents reluctant to worry their adult kids, and kids unable to discuss death with their parents.
The Project's website provides a step-by-step guide for planning and having the conversation with family. There's a separate guide for having the talk with doctors.
Both guides are excellent. I've had several talks with my kids, housemates, and doctors. I've been clear that quality of life is much more important to me than length of life. I've said I don't want treatments that would only prolong my life for a few months. Even so, I've printed out both Conversation Project guides and will use them to reinforce my end-of-life views with my families and doctors.