A long list of activities, highlighted in bright yellow chalk, beckons residents of Parkshore Senior Community in St. Louis Park. Brain games and French conversation, bingo and cribbage.
But the nearly 20 residents filing into the dining room of the tony high-rise have selected a different offering, titled “Conversations That Matter.”
It’s one conversation, really. The conversation about dying.
For the past year, a growing number of Parkshore residents — most in their 80s and 90s — have become pioneers of a movement to make it not just OK to talk about death, but to make it essential. They have been guided in this important work by three poignant questions:
“How do I want to live until I die?”
“What matters most to me?”
And, “How can I be sure my wishes are carried out?”
To help answer those questions, they’ve watched a documentary about the limits of modern medicine, held book clubs and asked candid questions of medical and legal experts regarding do-not-resuscitate (DNR) orders, CPR and feeding tubes.
They’ve also completed their own health care directives, which spell out what they do and do not want should they be unable to make the difficult decisions for themselves.
“There’s recognition that we need more conversations like this with the right people, about issues every one of us faces,” said Shelby Andress, 84, a founding member of the Parkshore guiding group. Her husband, Jim, died at 75 of Alzheimer’s disease. “No matter how good your plans are, and how much you’ve talked, it’s still complicated.”
There’s an urgency in their mission.
More than 46 million Americans are older than 65, and that number is predicted to grow to nearly 100 million by 2060. Many seniors will thrive for decades, but there’s a clear disconnect between those who say they want control over the end of their lives and those who are making it happen:
• About 80 percent of Americans think it’s a good idea to complete a health care directive, the document that spells out your wishes for medical care should you no longer be able to speak for yourself. Only 26 percent have done so.
• Ninety percent of adults say they would prefer to receive end-of-life care at home if they were terminally ill. Data from the Kaiser Family Foundation reveal that only one-third of patients do.
• One-third of American families, even those with health insurance, spend most or all of their life savings caring for their seriously ill loved one.
Doctors often are blamed for wanting to avoid distressing conversations, but the truth is we all are guilty. Nobody wants to have this conversation.
“Doctors historically have said, ‘I don’t want to bring it up until the patient brings it up,’ ” said Ed Holland, a retired United Methodist minister and Park Nicollet advance care planning volunteer, who speaks free of charge to community groups and organizations. “And the patient says, ‘I don’t want to bring it up until the doctor brings it up.’ So what do you suppose happens?”
Right. Nobody brings it up.
Yet Holland is seeing a dramatic shift in thinking — and doing — thanks in part to initiatives such as Honoring Choices, which has trained nearly 4,000 Minnesotans to talk about end-of-life issues, as well as journalist Ellen Goodman’s the Conversation Project, and Respecting Choices, a La Crosse, Wis., initiative on which Honoring Choices was modeled.
These programs, he said, “are empowering not just doctors, but a variety of health care professionals, patients and families, to initiate the difficult conversations that matter about being mortal.”
Another big change: National Health Care Decisions Day, a nationwide campaign to get this conversation started, ran for an entire week this year, ending April 22.
As reported last Sunday, Minnesotans can feel proud that our state has emerged as a national leader in the effort to talk about the last stage of life.
Holland calls the Parkshore group “a model for other facilities,” and they do, in fact, have their sights set on taking the curriculum they’ve developed to other senior facilities, as well as congregations.
Resident Sue Larson, 90, helped get the ball rolling.
After hearing Atul Gawande speak in St. Paul in 2015, she rushed out to buy the doctor’s bestselling book, “Being Mortal: Medicine and What Matters in the End.”
“It woke me up,” Larson said of the unflinching discourse on the limits of modern medicine in our waning days.
Larson, who worked for the late Gov. Elmer Andersen, the League of Women Voters and the American Association of University Women, has always been active. At Parkshore, she founded a poetry group after moving in two years ago. But she wanted to do something with greater impact. After hearing Gawande, she decided that that something would be talking candidly about death.
As a bonus, the effort would be a gift to her children.
“I don’t feel my children are rejecting the idea of my putting wishes in writing,” Larson said. “But they don’t want to be the chief person to carry it out. They can’t deal with the questions they must face around that, such as when do you extend life? That’s a hard one.”
David Litsey agreed. Widowed three years ago, the 88-year-old former schoolteacher said the fledgling group’s mission resonated with him.
He has assured his adult children that his plan is to “live life to the fullest until the very end,” he said. “But you need to know you’re free.”
Larson started by pulling together a small group to plot out a year of education and action. She brought in a member of Westwood Lutheran Church, who shared details of a congregation-wide initiative there.
Then, the group sponsored six screenings of the documentary “Being Mortal.” The first one attracted 20 Parkshore residents, the last more than twice that number.
Next, resident Joyce Pedersen hosted five one-hour book club discussions of “Being Mortal,” which revealed common concerns: How could they be sure their wishes would be followed? How should they bring up this difficult conversation with their adult children?
Later, Holland and Dawne Starkey, Park Nicollet’s advance care planning manager, guided Parkshore residents page by page through their own health care directives. They tackled choosing health care agents and wrestled with questions such as “If your heart or breathing stops, do you want CPR attempted?”
“Enough of the ethereal,” the 84-year-old Pedersen joked. “Now rubber hits the road.”
Crafting a directive, Holland told them, “is a gift that you give to your family and your medical providers.”
Holland acknowledged that the system isn’t perfect. Feeding tubes have been inserted, CPR performed on people who wouldn’t have wanted those life-continuing efforts. But he’s heard many positive stories, too.
His own parents had health care directives, and “we were able to follow through on those, and advocate in a way that we knew they would want,” he said.
Doing the right thing
Being part of Parkshore’s grass-roots movement “has been revitalizing” for Andress, a consultant for Search Institute for 35 years. After her once vigorous husband’s Alzheimer’s was diagnosed, the couple talked about death “as bluntly as if we were talking about what we were having for dinner.”
They even were asked by a television producer to make a DVD about their Alzheimer’s journey, titled “What Is It Like to Die?”
“It’s one of the hardest things for friends and relatives to accept,” said Jim, a biology teacher, speaking in the video. “There is so much emphasis today in medicine on keeping a person alive … on drawing a person through one more day.”
When Jim died, he was surrounded by family members who honored his wishes. There is powerful validation for Andress in seeing the Parkshore effort bring a once taboo topic into the light.
“There’s been a certain release from sometimes unexpressed anxieties,” Andress said, “so there’s more energy to live life with greater purpose.”
At least half of the community’s 240 residents have been touched in some way by the Parkshore outreach. Aside from crafting health care directives, many residents have attended gatherings or, as resident and retired doctor Stuart Hanson said, “started casual conversations on the topic over dinner. Maybe part of our work as elders is to help the younger generation learn how to die.”
The guiding group is gearing up for another year of talking about death. Someone suggested a wine and cheese event to stir up interest. Another suggested that “Conversations That Matter” packets be presented to all new residents at move-in time.
On May 1, the group will sponsor a session titled “Capacities and Limitations of Medical Care.” Two weeks later, a panel of residents will share their own experiences creating health care directives.
In June, Park Nicollet’s Dr. John Thomas will speak about hospice and palliative care. Late summer and early fall events will tackle directives, wills and ethical wills, even funeral planning.
Larson, who helped start the initiative, noted proudly that people stop her in the hallways now and on the elevator. They tell her: “You’re doing the right thing.”
Andress recently ran into Parkshore campus director Mike Metzler in the atrium.
“An awful lot of children of people who live here are very grateful to your group,” he told Andress, “because, finally, they are having the conversation.”
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