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IN WISCONSIN, A PIONEERING PROGRAM

Debate Over End-of-Life Care Began in Small Midwestern Town

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By Alec MacGillis
Washington Post Staff Writer
Friday, September 4, 2009

LA CROSSE, Wis. -- This city often shows up on "best places to live" lists, but residents say it is also a good place to die -- which is how it landed in the center of a controversy that almost derailed health-care reform this summer.

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The town's biggest hospital, Gundersen Lutheran, has long been a pioneer in ensuring that the care provided to patients in their final months complies with their wishes. More recently, it has taken the lead in seeking to have Medicare compensate physicians for advising patients on end-of-life planning.

The hospital got its wish this spring when House Democrats inserted that provision into their health-care reform bill -- only to see former Alaska governor Sarah Palin seize on it as she warned about "death panels" that would deny care to the elderly and the disabled. Despite widespread debunking, those warnings have led lawmakers to say they will drop the provision.

"It's really distressing," hospital official Bud Hammes said. "These things need to be addressed."

President Obama's health-care initiative was nearly consumed by the furor over that provision, and Republicans continue to argue that the legislation would ration care for the elderly. The debate has underscored how fraught the discussion is on end-of-life care in a country where an optimistic ethos places great faith in technology and often precludes frank contemplations of mortality. That tendency has a price tag: A quarter of Medicare costs -- totaling $100 billion a year -- are incurred in the final year of patients' lives, and 40 percent of that in the last month.

But the controversy has had most resonance where it arguably took root, in this town of 52,000 where nearly everyone of a certain age has an advance-care directive.

La Crosse became a pioneer in addressing end-of-life questions in the mid-1980s, after Hammes, a native of the city who has a doctorate in philosophy from Notre Dame, arrived at Gundersen as the director of medical humanities, charged with educating resident physicians about ethics. He noticed a "troubling pattern," he said, in which family members struggled to make medical decisions, such as whether to continue dialysis after a stroke.

"We'd turn to the family and say, 'We need your input. If your mother or father could speak now, what would they tell you?' And the family would say, 'If we only knew,' " said Hammes, 59. "I could see the distress. They were going to have to live with themselves, with the worry about making a mistake. This was unacceptable."

The hospital began urging families to plan while people are healthy. For those who want help writing a directive, a physician will discuss the powers and limits of medicine and explain to family members what it means if they agree to serve as the "health-care agent." They will also help people define the conditions under which they would no longer want treatment. Hammes said people often define this as "when I've reached a point where I don't know who I am or who I'm with, and don't have any hope of recovery."

The directives are power-of-attorney forms that protect physicians and family members against liability, and the hospital makes clear to its doctors that they are expected to follow them. Today, more than 90 percent of people in town have directives when they die, double the national average.

The reliance on directives has an impact on the type of care people receive: Gundersen patients spend 13.5 days on average in the hospital in their final two years of life, at an average cost of $18,000. That is in contrast with big-city hospitals such as the University of California at Los Angeles medical centers (31 days and $59,000), the University of Miami Hospital (39 days, $64,000) and New York University's Langone Medical Center (54 days, $66,000).

Those disparities are not explained just by the hospital's end-of-life philosophy. Under Medicare formulas, Gundersen and other Upper Midwest hospitals receive lower reimbursements. The high-spending hospitals argue that they are also dealing with a more diverse and costly patient base.


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