Martha Hayward of the Institute for Healthcare Improvement calls it "the most-prepared-for revolution ever" — that would be the one in which patients become more engaged in their own care, particularly at the end of life. The problem is, Hayward said during a recent IHI webcast, "nobody told the patients."
Now a variety of forces are converging to give Americans a gentle but much-needed kick in the pants. The goal: get us talking about how — deep breath — we would like to die. And, in the process, transform dying in this country.
That won't happen if left up to the health care system, asserts Ira Byock, M.D., director of palliative medicine at Dartmouth-Hitchcock Medical Center. The system's "unwavering focus on treatments for sustaining life" means providers too often ignore what's best for people with advanced illness when it comes to quality of life, he writes in The Best Care Possible: A Physician's Quest to Transform Care at the End of Life.
Individuals must "take back serious illness, dying and grief, making it our own," Byock said on the IHI webcast. That means receiving excellent medical care, yes, but it also means dying with as little pain as possible, where we want to, surrounded by people who care about us. It means embracing our personal values and engaging in whatever rituals and routines bring us comfort and peace of mind.
It won't be easy. "Americans are so death-defying, we've never seen it in our best interest to be cared for well or for our loved ones to be cared for well during this last phase of life," Byock said.
Perhaps, ironically, getting to a new way of dying will look a lot like what took place a couple of decades back at the other end of life's spectrum.
"A generation ago, Americans transformed birth," Ellen Goodman wrote in the January-February issue of the Harvard Business Review. "That didn't happen because doctors urged women out of stirrups; hospitals didn't put out the welcome mat for dads and their video cameras. No institution promoted soft lights and doulas. Instead, women (and Byock points out, men) recognized there was a better way and insisted on changing their own experience."
By now, most baby boomers, myself included, have helped care for a friend or family member who was dying, and know firsthand how flawed the experience was. We're eager for change.
Goodman believes the revolution will start with conversations that take place among loved ones around the kitchen table — conversations most of us have avoided until now. "We still engage in a conspiracy of silence," she wrote in HBR. "Parents are reluctant to worry their adult children; children are uncomfortable bringing up dying with their parents." But in our attempt to protect one another, we're ill-prepared when the time comes to make decisions that conform to our loved one's preferences about treatment, extreme measures, personal values and other aspects of end of life.
To kick-start the transformation, Goodman, a Pulitzer Prize-winning newspaper columnist, co-founded the Conversation Project. A group of caregivers, clergy, journalists and others came together to share stories about their experiences when loved ones were dying. They discussed the cascading number of medical decisions" they faced without having first found out what their loved ones would have wanted.
Now, in partnership with the IHI, the Conversation Project is spreading the word nationwide, beginning with a media campaign. First up: examples of conversation starters you and I can use to finally, once and for all, shatter the conspiracy of silence that surrounds the inevitable fact of dying. Life will end for each of us and for every person we care about. Let's do whatever we can to make sure we all leave this world as serenely as possible.
I'd love to hear your thoughts on how we as individuals and as health care professionals can help improve the way we, and our fellow citizens, die in this country. Email me at firstname.lastname@example.org.