End-of-life directives that La Crosse health facilities began crafting nearly three decades ago continue to vault around the globe in an $8.5 million study for six European Union nations.
The study will be modeled on Respecting Choices, a Gundersen Medical Foundation program that evolved from a La Crosse health systems’ task force in the 1990s.
The program helps patients and families decide in advance the extent of care, such as nutrition and hydration and pain management, they want near life’s end, when it might prolong suffering and increase expenses without health benefits.
The EU study will involve 1,200 advance-stage cancer patients in England, the Netherlands, Belgium, Italy, Denmark and Slovenia, said Bud Hammes, director of Respecting Choices.
“By my estimation, it is the biggest such study in the world,” Hammes said.
“In health care, most of the glory goes to technical and chemical intervention,” as opposed to the communication that is the linchpin of Respecting Choices, he said.
The Choices program goes back to a Gundersen pilot study of 66 dialysis patients in 1986-88, Hammes said.
Because of its success in pinpointing care choices, the leaders of the four medical institutions in La Crosse at the time — Gundersen Clinic, Lutheran Hospital, Franciscan Healthcare and Skemp Clinic — created a task force to create a joint program.
Thus was born the La Crosse Medical Centers Task Force on Advance Directives, which Hammes co-chairs with Nickijo Hager, mission vice president of Mayo Health System-Franciscan Healthcare.
“They asked for 50 percent of the adult population to have advance planning before facing end-of-life decisions,” Hager said.
A 1995 study found that 85 percent of the 540 people who died in La Crosse County had an advance directive, and a 2007 study found that 90 percent of 400 who died had one.
Now, the rate is 96 percent, Hammes said.
“One of the greatest things we all enjoy about modern medicine is what it can do to treat illness at the end of life,” Hammes said. “At some point, that becomes ineffective or burdensome, and the patient says, ‘I don’t want to continue treatment.’”
If families haven’t discussed that possibility, “they are no better than strangers at making the decisions,” he said.
The discussion must go beyond the family, Hager said, to include the doctor and a spiritual adviser.
“That is important because people want to make sure the directives are aligned with their faith traditions,” she said.
“End-of-life decisions are very difficult for family members, period,” she said. “It brings comfort to know that they’re doing what Mom or Dad wanted.”
Otherwise, family members are just guessing, she and Hammes said.
“It can cause severe moral distress. Families can have post-traumatic stress. When families are forced to make the decision, research shows they will question months later whether they have killed Mom or Dad,” he said.
“In no way does it deny anyone good care. We want them to plan in a way to get care that will help them, but also plan in a way to prevent treatment that wouldn’t help,” he said.
Collaboration between Gundersen and Mayo-Franciscan have made the local program a success, Hammes and Hager agreed.
“We’ve focused on the greater needs of the community instead of being competitive,” said Hager, who said such directives must be in a patient’s medical records so hospital officials have access in case of an emergency.
The La Crosse success brought national and international attention to the program, to which Gundersen now has proprietary rights under an agreement with Mayo-Franciscan.
“Gundersen was intent on taking it to a broader level,” Hammes said.
Gundersen has licensed the program not only to other health care systems in the United States but also in countries such as Australia, Singapore and Germany, said Hammes, who declined to reveal financial details of the licensing.
The Australian version, titled Respecting Patient Choices, recently received $15 million from the federal government to make it the national standard of care, Hammes said.
Wisconsin and Minnesota also have programs based on Respecting Choices — titled Honoring Choices — aiming to become statewide standards.
For the EU study, a European team will visit Gundersen in May to learn the program, after which it will be translated into five other languages, Hammes said. Gundersen officials also will travel to Europe to help with the study.
“One question that is always asked is, ‘OK, it is working in La Crosse, which is rural and white, but will it work here?’ Well, it also works in Singapore, which is urban and not white,” Hammes said.
“It not only is transferable, but it also speaks to the commonness of the shared human experience on this issue, regardless of race, religion or color,” he said.