Helpful Tips for Critical End-of-Life Conversations


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.”

That was seven years ago. 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.

Source: Washington Post, columnist Ellen Goodman wants families to have end-of-life talks before a crisis hits.

Washington, DC, resident John Schappi blogs about aging, exercise, diet, pills, supplements, and his life with Parkinson’s disease and prostate cancer. Once upon a time, he was addicted to nicotine, alcohol and sex. These days, his passions include gardening, playing bridge, meditating, going to the theater and traveling.

Visit: Aging, Parkinson’s, and Me

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A good way is certainly to have someone else face the music for you, in that those subjects seem so difficult for people to broach. It is simply not for most people to sit with strangers and make plans for termination.
A close friend or spouse should do as they're generally well into the mind of their spouse way more than any professional.
Important discussion. If such a choice to stay at home is made, then how would the spouse/caregiver have enough physical support for 24 hour around the clock care for the patient which could probably occur almost constantly? Financially, that would prove to be unreasonable since the medicare/medical supplement insurance would not cover it?

My daughter has opted for palliative care, not hospice. At 32, she has survived brain cancer for 10 years and treatment for squamous cell carcinoma, and MDS that converted to AML last Fall. She went through BMT without defeating the Leukemia. She said no more chemo. She just wants to be comfortable and no longer poked and prodded. We are following her wishes.