By Warren Wolfe
Soon after he joined the staff at Gundersen Lutheran Hospital in La Crosse, ethicist Bud Hammes concluded that too many patients were dying the wrong way.
“Instead of spending their final days and weeks in relative comfort, surrounded by family and friends, they were exhausted, in pain or sometimes in a drugged stupor,” said Hammes, who holds the unusual title of director of medical humanities.
“It was care nobody wanted,” he added, “and nobody knew how to stop it — not patients, not families and not the doctors.”
As a result, Hammes launched an experiment called Respecting Choices that has transformed medical care at the end of life in this Wisconsin border city of 51,000.
Today, 96 percent of the hospital’s patients — 10 times the national average — have thought about, and written down, specific instructions for end-of-life care.
Now two decades old, the La Crosse program has become an international model for end-of-life medical planning and is about to debut on a much larger stage — the Twin Cities.
“We’ve had living wills and advanced directives in various forms over the years,” said Sue Schettle, CEO of the Twin Cities Medical Society, the professional association for local doctors, which is coordinating the Minnesota campaign. “We’ve made progress in the past, but this feels very different — more like a community conversation.”
Working with the Citizens League, Twin Cities Public Television and several Minnesota insurers, the doctors’ group will roll out a two-year campaign of broadcasts, community meetings and other events in an effort to change the way people in the Twin Cities think about and plan for medical care in their final months.
On a recent day at Gundersen, Aggie Tippery, 82, changed her care preferences while working through a Respecting Choices document with a counselor.
“You know, I’m kind of used to being in charge of myself,” said Tippery, who lives in Hokah, Minn., across the Mississippi River from La Crosse. “I don’t want to give up control just because my body starts giving out — especially then.”
Conversations like that happen every day at Gundersen and its 40 clinics in Wisconsin, Iowa and Minnesota.
But they also come up in area coffee shops, law offices, churches, beauty parlors and family gatherings.
“Really, this is as much about how we’ll live at the end of life as about the kind of care we want when we’re dying,” said La Crosse attorney Maureen Kinney, who incorporates that discussion into her practice.
“We don’t always talk about death around here,” she said, “but it’s become more or less a normal conversation.”
Fine-tuning care choices
Respecting Choices works with patients in three stages: General medical decisions while they are still healthy, perhaps at middle age; updated specific choices as they develop chronic diseases; and finally a Provider Order for Life Sustaining Treatment (POLST), a formal document signed by their doctor, when it’s clear that death could come in the next year or so.
As patients develop more complex conditions, their end-of-life care options often become more complex. Doctors, nurses and trained counselors then help patients explore the impact of various treatments — chemotherapy, CPR, antibiotics, heart surgery, dialysis or other weapons against disease.
At its heart, Hammes said, Respecting Choices “is a process, a series of conversations over years” with family, health professionals and maybe a trained counselor.
While it is not designed to reduce health care spending or steer patients away from aggressive treatment, experts say that having better-informed consumers could have the effect of reducing unwanted or unnecessary care. At Gundersen, for example, the cost of caring for a patient during the last six months of life is one-third below the national average — $12,500 vs. $18,200.
“This is not a ‘death panel’ kind of thing,” Hammes said, referring to fears that such conversations are designed to hasten death of expensive patients.
“You may want less invasive care at the end of life. Many people do,” he said. “But some want to get everything that might help — for religious, or family or other reasons. And that’s fine.”
Still, Hammes figures that while the program costs the hospital several million dollars a year in staff time, it also saves the hospital some — he’s not sure how much — by reducing costs of unwanted care.
‘This feels very different’
Already, 16 Twin Cities area hospitals and clinics have begun pilot programs to use the tool, called Honoring Choices Minnesota. With some room for local variation, the new program follows Gundersen’s protocols. That includes making sure that the patient’s Honoring Choices documents are entered in their electronic health records so that they can be consulted instantaneously — which can be critical in emergency situations.
Rival health providers and insurers in the Twin Cities also are collaborating to introduce the program throughout the community — and to ensure that patients’ plans are followed by doctors, hospitals, nursing homes, ambulance crews and other health professionals.
Like the La Crosse program, Honoring Choices goes beyond simply filling out a form. It focuses on choosing an advocate to speak for the patient if necessary, and fine-tuning end-of-life decisions as the patient’s health changes.
Allina Hospitals and Clinics, with more than 800,000 patients, was the first to start an Honoring Choices pilot program, in 2008. Now it has been implemented system-wide.
One result: About 38 percent of Allina hospital patients older than 65 have an end-of-life document on record, more than double the figure in 2007.
“Families and patients say they’re highly satisfied with the experience, even though some said they first thought talking about death would be too sad,” said Sandra Schellinger, a nurse practitioner who helped implement the program at Allina.
“The topic can seem daunting,” she added. “But the results typically bring great satisfaction — and ultimately better care at the end of life.”
On Monday evening, Philip Friest, 82, spent two hours with an Allina counselor and his two children at his Burnsville apartment creating a new advanced care directive to replace the one he did years ago in his attorney’s office.
“I feel better,” said the retired accounting professor from the University of Minnesota-Duluth. “We talked about things we’ve never talked about before — medical decisions, but really quality of life decisions. I trust my kids to do the right thing, but now they know what I think the right thing is.”
Consultation, and surprise
Aggie Tippery was certain she knew what choices she would want for end-of-life care. It was an exercise she’d been through before — first with her husband, who died two years ago, then filling out her own advance directive.
But with her health growing more fragile, it was time to enter the second phase of planning for the care she may want at the end of life.
With her son, Jim, beside her, Tippery sat down one afternoon in a Gundersen conference room with counselor Rita Erlandson.
The result surprised her.
She was clear on most of her choices: No CPR. No dialysis. A nursing home if necessary. And at first, she was ready to have doctors use machines to keep her going even if she no longer could communicate with people.
“Wait! Is that what they call brain dead?” she asked. “Oh, no. I guess I hadn’t worked that one out yet. If my brain is already checking out, let my body check out, too.”
Doctors, too, have noticed changes.
“We’re trained to fight to the death over a patient’s disease, and sometimes that’s not what the patient wants,” said Dr. Ben Waldro, who was just coming off the night shift at Gundersen’s emergency center.
“When the ambulance comes screaming up here after your heart attack or stroke or accident, I absolutely want to know your instructions for me. Nine times out of 10, I can punch that up on the computer immediately,” he said. “That makes me a better doc.”
The Rev. Mark Jolivette has seen a change in the way many of his parishioners at Our Savior’s Lutheran Church in La Crosse are prepared for dying.
“Talking about death and dying is not easy for most people, but it’s important,” he said. “Talking and planning can help dispel the demons we sometimes create. We don’t hide from death quite as much anymore.”