Twin Cities program helps patients discuss end-of-life planning

An effort that pioneered in La Crosse, Wis., in the 1980s to get more people to prepare for the end of their lives has moved into the Twin Cities, serving as a model to create Minnesota's first large-scale program for end-of-life planning.

The Twin Cities program, called Honoring Choices Minnesota, is three years old and includes every health provider and health system in the metro area. It's the first, large metropolitan implementation of advanced care planning in the country.

At Minneapolis-based Allina Hospitals alone, the number of patients filling out advanced care directives has gone from 16 to 39 percent.

That's far short of what La Crosse experienced, but Sandy Schellinger, program development manager for Allina's advanced-care program, said it nonetheless shows the potential for huge improvement in the Twin Cities.

"The consumer is going to have to be an equal partner in their health care going forward," Schellinger said. "Up until today, sometimes it's based upon more of their physician saying 'Here's what you should have, here's what I'm going to give you. Do you want it or not?' And what advanced care planning does is it lays the foundation for more of a shared decision."

In La Crosse, Mary Gerke was a recent typical example of how the program works. The retired 57-year-old secretary lives in Tomah, Wisconsin, with her husband, but last month broke her leg while on a Florida vacation.

To complicate matters, she has a heart condition and she's diabetic.

She flew back to Wisconsin, had seven surgeries and spent 21 days at Gunderson Lutheran Hospital in La Crosse, where doctors watched an infection that developed on the wound.

Gerke recovered but the ordeal got her thinking about the treatment she'd like at the end of her life.

Before leaving the hospital, Gerke met for 20 minutes with Chaplain Phil Kenyon to think about how she wants to die someday.

Kenyon gave her an 11-page health care directive to take home and fill out, and at one point Gerke asked him who should make her health care decisions if she's too sick to do so herself.

"That's going to be your choice," Kenyon told her. "You know your husband, daughter. You know your best friends. I don't."

Gerke explained, "I've been through it dealing with my family members. That's why I ask, this close friend that loves you like a sister, is that person better off making that final decision for you?"

Never easy, these conversations nonetheless have become routine in La Crosse.

More than 90 percent of adults who die here have filled out a living will, more than in any other city in the country.

Since the late 1980s, Gunderson Lutheran has been making sure patients like Gerke have health care directives. The hospital has trained about 100 facilitators -- usually nurses, chaplains or social workers -- who help patients think through the tough questions. Churches, nursing homes and non-profits around the community started having them, too.

"Now it's the exception for a person to be in a crisis and we don't have some type of plan from that patient," said Bud Hammes, the medical ethicist who started the La Crosse program, called Respecting Choices.

Gunderson Lutheran landed in the center of the national debate over health care a couple years ago when it supported a failed proposal in Congress to pay hospitals for the time spent on these end-of-life discussions. Currently, Medicare doesn't reimburse hospitals for that.

Hammes says he's had to dispel claims that advanced care directives somehow lead to limiting care for patients. In La Crosse, the cost of end-of-life health care is significantly less than in other cities around the country. Hammes says that's because having an advanced care directive often means patients have thought about what they want and sometimes that means they want less care; other times it mean more.

"People in general don't want to go through a prolonged period of suffering from the treatment only to die a little bit later," Hammes said. "So there's a balance people want to strike between prolonging life and quality of life. And at a certain point, the treatment itself become a burden. It becomes the thing that inflicts suffering and it's no longer of value to people."

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