I entered the windowless room in the basement of a Midwestern hospital and appeared before a government-sponsored "death panel."
Bud Hammes, the medical ethicist who started Respecting Choices.
Bud Hammes, the medical ethicist who started Respecting Choices. Joseph Shapiro/NPR
The woman in a pink coat over black slacks asked pointed questions about whether I'd want tube feedings or to be on a respirator.
OK, it wasn't really a "government death panel." You know from the flurry of controversy earlier this year that there's really no such thing.
But I did meet in that windowless room with Laura Kaufmann, a chaplain at Gundersen Lutheran Health System in La Crosse, Wisconsin. She's part of the Respecting Choices program and she helped me fill out an advance care directive.
This is routine practice in La Crosse. Nearly every adult in La Crosse—96 percent of them—dies with a completed advance directive, by far the highest rate in the country. But the Mississippi River city's success helped set off this summer's fears about government rationing of health care at the end of life. Listen to my report about advance directives there on Monday's All Things Considered.
Kaufmann and I sat around a small, round table. She came with an 11-page "power of attorney for health-care document." Over the next hour, she helped me think through questions like who I'd want to be my "health-care agent" who would understand my wishes at the end of life and who could make decisions for me if I were no longer capable.
She helped me with the question that asks "if I reach a point where it is reasonably certain that I will not recover my ability to interact meaningfully with myself, my family, friends, and environment," would I want to stop treatments to keep me alive. The form lists several: "tube feedings, IV hydration, respirator/ventilator, CPR, and antibiotics."
It quickly becomes clear that these are complicated decisions. What does that mean, to "interact meaningfully," I ask Kaufmann. As someone who covers aging, and in my own family, I've met many people with dementia who don't know what year it is, or can't follow a conversation anymore. They've lost a lot. Yet they can still find enjoyment in the visit from a friend.
And what about those treatments to continue or forgo? I've got questions about all of them. I tell Kaufmann of my friend, the late Ed Roberts. He was a post-polio quadriplegic who, I've argued in the past, became one of the most important civil rights figures of the last half of the 20th century. Ed used a respirator and an iron lung to breathe, but for him they were just other things that helped him lead his life, like his wheelchair. Or, as Ed would say, the way I depend on my glasses. I also thought of a friend who died of Lou Gehrig's Disease, and who, after lots of research, decided that he wouldn't go on a respirator, a grim milestone for someone with that disease.
So it helps to be able to ask these questions of Kaufmann, who's specially trained to consider them. Still, I can see why someone might distrust this kind of help. People have their own prejudices about what's proper care at the end of life—even a trained facilitator.
That's not a problem I see with Kaufmann. She explains that she's trained to listen to my thinking and how I describe my values and experiences. She's a good listener. The things she can't answer become our "homework". The next step (if I lived in La Crosse, instead of being a visitor) would be for her to find people who could talk to me in greater depth about my questions—a doctor, a medical ethicist, a nurse or some other expert.
Kaufmann says the point of the Respecting Choices is to get people thinking about the treatments they'd want at the end of life, but long before there's a health crisis. That's the key, she explains, to getting good care and getting your wishes followed.
She says what we're doing in this room needs to be just the first of continued discussions I have about my wishes—because they can change with time, experience or as I face a health crisis. "I would say it's important to revisit it every five years," she says. "Your health will change. Your won desires may change. What we want in our 40s is different than where we are in our 60s and then in our 80s."
La Crosse's near-universal use of advance directives came with an epiphany by Bud Hammes, the medical ethicist who started Respecting Choices in La Crosse. Hammes saw that it wasn't enough to hand patients a living will. They wouldn't fill them out. They give up trying to figure out these confusing issues. So Hammes got Gundersen Lutheran to train its chaplains like Kauffman, as well as nurses, social workers—and ministers, lawyers and others in the community—to help people understand and make those choices.
But all this costs money. Medicare doesn't reimburse Gundersen Lutheran for the time its nurses, chaplains and social workers spend on this. That's where Congress came in. Members included provisions in the health care bills to reimburse health systems for the kind of periodic and continued end-of-life discussions with patients that are routine in La Crosse. That's what set off the alarms about death panels and rationing of care at the end-of-life. The Senate took the provision out of its bills. But there's a version in the bill that was passed by the House of Representatives.