Lisa Laliberte assumed that her family would be a model for handling a medical crisis with calm resolve. But in December, when her father had a heart attack followed by a pulmonary embolism, she realized that none of the kids knew what treatment, or lack thereof, Dad would want.
While her parents had entrusted each other to make decisions, “we never had that conversation as a family,” said Laliberte, communications manager for Minnesota Gastroenterology and a member of the Roseville City Council. “We hadn’t done what everybody advises you to do.”
With her father recovering, Laliberte is now practicing what she preached.
On Saturday, she moderated a seminar on health care directives, sponsored by Roseville’s Community Health Awareness Team. The seminar coincided with National Health Care Decisions Week, which until this year had been limited to one day.
“The only way to relieve the pressure and stress on our loved ones,” she said, “is to have these broader conversations as a family. A lot of things have become clearer for us.”
Clarity is coming your way, too. Live in Minnesota? Get ready to talk about dying in Minnesota.
The conversation nobody wants to have is getting harder to avoid, whether you live in a small town or urban center, and whether you’re 18 or 80. In a few short years, Minnesota has become the go-to state for facing end-of-life discussions — from weighing the pros and cons of CPR, to the (big) differences between a will and a “living will” (commonly called a health care directive), to what kind of legacy we hope to leave our children.
Among recent efforts:
• The Minnesota Legislature appropriated a one-time grant in 2016 of $250,000 to the Minnesota Department of Health to encourage individuals, families, caregivers and health care providers statewide to start talking about end-of-life choices.
• In Alexandria, Mora and Waconia, a pilot program has been launched that gives residents candid information about hospice. The goal is to allow people to have the power to choose how they want to live out their remaining days, said Jennifer Lundblad, president of Stratis Health, which is overseeing the program. Book club hosts, hairdressers and church leaders are being encouraged to start conversations “where people gather” about the benefits of hospice, she said.
• Fourth-year University of Minnesota Medical School students now attend mandatory two-hour sessions to learn about palliative and comfort care. In addition, U employees can earn points toward their wellness program by taking the Advance Care Directive Pledge.
• MPR’s Cathy Wurzer is leading an 18-month effort called the Convenings to encourage a statewide conversation on how we want to live and die. Working in collaboration with the Bruce Kramer Collaborative and several health and media partners, the outreach to six Minnesota communities, from Ely to Anoka, was spurred by the book “We Know How This Ends: Living While Dying,” by Wurzer and Kramer, a college dean who died of ALS at age 59.
• And it’s hard to find a senior center that isn’t tackling end-of-life issues. The Metropolitan Area Agency on Aging’s Senior LinkAge line outreach team, for example, did 19 health care directive presentations in 2016 alone, up from 12 in 2015.
“There has been an increase in demand,” said agency spokeswoman Rachel Von Ruden. (For the record, Von Ruden has completed her health care directive — and she’s 25. She’s working on her parents to do theirs.)
While approaches vary, the goal is the same: to minimize potentially crushing end-of-life costs, champion comfort care over futile medical interventions and, most important, create clarity around end-of-life desires too often left to interpretation by grieving — or fighting — family members who cannot agree on what Mom would have wanted.
Where to start
Of course, having an end-of-life discussion isn’t easy in the best of circumstances.
“Family members don’t want to convey a sense of hopelessness,” said Anne Denny, an Eagan-based health care consultant who works with individuals and couples to craft detailed health care directives. “Parents don’t want to upset adult children. Adult children don’t want to be seen as nudging parents toward the end of life by raising questions. And many patients aren’t ready to accept their impending passing.”
Nevertheless, in 2010 Denny launched a start-up to embrace acceptance of death. She designed a web-based health care directive tool that she licensed to Allina Health, wrote a book, launched an online course about end-of-life issues and regularly speaks in the Twin Cities area to churches, service groups and financial advisers.
“I want to help people prepare for these decisions so there will be less fear, less family implosion and a more peaceful passing,” said Denny, whose mother died of Alzheimer’s in 2012.
Most of her clients, she said, are in their 40s and 50s, and are “wise enough to see the potential impact on their loved ones. This is not just about you. Those who walk through this journey with you can feel confident they’re carrying on your wishes. They don’t have to carry turmoil for years: ‘Did we do enough?’ ”
Her 90-minute sessions take individuals and couples through an extensive list of questions, including those about artificial feeding if recovery is unlikely, organ donation, needs for emotional and spiritual care, even musical preferences as one lives out one’s final days. While her automated health care directive tools have been legally vetted, some clients opt to have their directives reviewed by an attorney.
Denny acknowledges that this is “very emotional work” for her clients, work that doesn’t come naturally to most. But to Denny, the only thing scarier than talking about death is not talking about it.
At a recent health care directive session, 71-year-old Don Wilson of Minneapolis showed the group the DNR/DNI (do not resuscitate/do not intubate) cards he downloaded off the internet and keeps in his wallet. He was moved to do so after a series of doctors refused to have an end-of-life talk with him.
Beth Bedell of St. Paul, 67, facing an inoperable brain tumor and a heart attack, asked one doctor about directives; he told her, “I don’t like to talk about those things.”
Others tell stories of ribs cracked and livers lacerated by CPR, a procedure that is far more assaultive and far less effective than television shows would have us believe. In the hospital, a person in a relatively healthy state has just a 22 percent chance of being brought back by CPR and doing well, according to the New England Journal of Medicine. In a nursing home, it’s 3 percent.
And, contrary to unfounded hysteria around “death panels,” normalizing end-of-life talks offers many advantages by giving us back control, freeing us to embrace productive lives and granting us more and better days with loved ones when we enter our final chapter.
The La Crosse model
Until about 1945, pretty much everybody died at home. Life expectancy at the time averaged 64 for men and 68 for women.
Soon, life expectancy climbed (it’s now 76 for men and 81 for women, according to the CDC) thanks to antibiotics such as penicillin, drugs to control blood pressure, artificial respirators, kidney transplants and other modern miracles.
“It’s been said humorously that the United States is the only society that thinks death is optional,” said Dr. Barry Baines, a family medicine physician and part of the Minnesota hospice movement for 25 years.
Because doctors receive little or no training in end-of-life conversations, the default option is often to keep offering additional treatment, even if there’s only a small chance of success.
“Advance directives are important,” Baines said. “But if a person and his or her family don’t understand the seriousness of their illness … if you think your advanced cancer is going to be cured, you receive treatment that is not what you might have chosen if you knew what was going on.”
He is quick to add that the objective is not “to ambush doctors. We want to support them. It’s all about the conversations. Once doctors get that ball rolling in the examining room … it’s always OK to talk about it.”
Twenty years ago, he participated in a national yearlong conference on end-of-life care, including how to assess and relieve suffering. He met a medical ethicist named Bernard “Bud” Hammes, who had developed an initiative at Gundersen Health System in La Crosse, Wis. Called Respecting Choices, the Wisconsin effort set out to understand what every single patient in its system wanted when healing was no longer an option.
Hammes chaired a task force whose goal was to change the way La Crosse, a city of approximately 55,000 people, dealt with death. Instead of avoiding it, they would face it head-on.
Today, an astounding 96 percent of Gundersen patients, age 18 and up, have some type of written care plan in their medical record when they die.
Hammes noted, importantly, that patients who want to keep trying aggressive treatments are supported in that decision, as are the wishes of those who desire less invasive care.
“And people can, and do, change their minds,” he said. “Our only goal is to make sure the patient and his or her family think out these issues clearly. Do we keep going, or stop? We just want to make sure it is an informed decision.”
Today, Respecting Choices is as fundamental to the life of La Crosse as its growing number of brewpubs.
“Every time I go to the doctor, they ask me if I’ve done my health care directive,” said La Crosse resident Jo Ellen Hartman. “Our 30-year-old daughter has done it, too. Pretty much everyone has.”
At home with death
Hammes came to the Twin Cities in 2009 to talk about the progress in La Crosse. Shortly afterward, the Twin Cities Medical Society Foundation gathered a coalition of representatives from all the major health systems in the Twin Cities to launch a three-year public engagement effort called Honoring Choices, modeled on the one in La Crosse.
Hammes’ team provided the curriculum and training. Over the next several years, nearly 4,000 Minnesota facilitators were trained in end-of-life issues, including doctors, social workers, nurses, parish nurses and family members, “anyone with an interest in helping people have these tough conversations,” said Sue Schettle, co-founder of Honoring Choices and CEO of the foundation.
By 2014, 32 percent of Minnesotans had completed a health care directive, compared with the national average of 26 percent. Perhaps even more impressive, 12 states, including Wisconsin, Florida, Washington and Massachusetts, are using the Honoring Choices initiative.
“We humbly say that we have had an impact,” said Honoring Choices Executive Director Karen Peterson, who’s working on a new statewide push to encourage employers to offer advance care planning as part of their health care benefits packages.
“When we started doing our public talks five or six years ago, people would say, ‘Advance care planning? What is that? Is that like writing a will?’ Now they tell us, ‘I’ve downloaded my health care directive and I have a question about page two.’ ”
Even with diligent planning, problems arise. Training doctors in ways to broach the topic with clarity, and urging medical systems to create protocols that link them, immediately, to documents, will go a long way to lessening potential heartache.
Advocates of living and dying well remain bullish that Minnesota will continue to be a leader.
Peterson looks ahead to a time, say, 10 years from now, when “every single hospital, clinic and senior facility is well versed in advance care planning, and every Minnesotan 18 and older has a directive in place. I’d like this conversation to be normalized and commonplace,” she said.
Hard to imagine? Peterson suggests that we look back to see how far we’ve come.
Thirty years ago, “a lot of people were squeamish about organ donation, and yet now it’s matter-of-fact. It’s talked about at drivers’ education and there are commercials on TV. We’d like advance care planning to be something that people just talk about, and that completing a directive is a regular part of becoming an adult.”