All Things Considered

Why This Wisconsin City Is The Best Place To Die

By Joseph Shapiro

Published November 16, 2009 4:00 PM

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Sandra Colbert sits propped up in a hospital bed at Gundersen Lutheran Hospital in La Crosse, Wis., connected by tubes to oxygen and IV fluids. Doctors have told her she didn't have a heart attack. But it sure felt that way when she collapsed at the gym a few hours earlier. "It felt like my heart exploded," she says, then adds. "I thought I was going to die."

She's not going to die, the doctor reassured her. But now nurses are asking her to think about dying. Or, more specifically, they've asked her to fill out a living will.

Hauser says he doesn't want to go on dialysis "to be tied to a stupid machine for 15 hours a week." But, because of advanced conversations with his doctor, he's prepared to be able to go on dialysis if he changes his mind.(Joseph Shapiro / NPR)

It might seem almost rude to ask a woman who just a few hours ago had reason to fear she was about to die — but who now knows she's OK — to think about how she does want to die some day. Yet it's a routine question in this Midwestern city on the Mississippi River.

The specially trained nurse, in this case a woman named Laura Wiedman, will spend more than an hour with Colbert — and her husband Jim — and help them both think through the treatment they'd want at the end of life.

Respecting Choices

Wiedman takes out a 12-page document and goes through the questions: Who do you want to make health care decisions for you if you can't make your own? If you reach a point where it is reasonably certain you will not recover your ability to interact meaningfully with friends and family, do you want tube feedings, IV hydration, a respirator, CPR and antibiotics?

Bud Hammes, the medical ethicist who started Respecting Choices, says "We believe that our patients deserve to have an opportunity at least to have these conversations."(Joseph Shapiro/NPR)

These are complicated questions. It's something that the Colberts — like most adults in this country — have put off. But after Sandra's scare today, and Jim's hospitalization with a head injury this summer after he fell off an electric bicycle, it's something they both know they need to do.

Sandra cries when she writes down that she wants each of her grandkids to speak at her funeral. But there's more laughter than tears. Sandra says she wants Pink Floyd's "Put Another Brick in the Wall" and Ricky Martin's "Livin' la Vida Loca" played at her funeral. Jim jokes that he'll write down in his advance directive which of his daughters really was his favorite — a family joke among the girls.

The Colberts complete the directives and the nurse summons witnesses to watch them sign. Then Wiedman enters them in the health system's computers.

Now, anytime a doctor in this large health system pulls up their records, their wishes for end-of-life care will be prominently displayed.

The result of all this attention is that nearly all adults who die in La Crosse, 96 percent of them, die with a completed advance directive. That's by far the highest rate in the country.

But it's expensive to spend time with patients filling out living wills. Medicare doesn't reimburse for the time the hospital's nurses, chaplains and social workers do this. Bud Hammes, the medical ethicist who started the program, called Respecting Choices, says it costs the hospital system millions of dollars a year. "We just build it into the overhead of the organization. We believe it's part of good patient care. We believe that our patients deserve to have an opportunity at least to have these conversations."

And that's how La Crosse unexpectedly got in the middle of the national debate over health care and the so-called "death panels."

A New Standard Of Care

There's a proposal — it's in the health bill passed by the House of Representatives — that would pay for the kind of periodic and continued end-of-life discussions with patients that are routine in La Crosse. Gundersen Lutheran is pushing for it.

Hammes says claims that government-run panels would pressure sick people to die are bizarre exaggerations — and that the experience of this Wisconsin city proves it. "These are conversations that we have with our patients. They're not done in a secret room," Hammes says. "These are open conversations involving family members, pastors, attorneys. It's part of our community fabric now, it's part of how we deliver care."

One result of the way that care is delivered: At Gundersen Lutheran, less is spent on patients in the last two years of life than any other place in the country.

Choosing In Advance

The Dartmouth Atlas of Health Care documents the vast difference in health care costs from one place in the country to another. At Gundersen Lutheran, the cost of care for someone in the last two years of life is about $18,000. The national average is close to $26,000. At one hospital in New York City, it's more than $75,000.

"When people see the low cost in La Crosse, there are assumptions about rationing care, about denying care, about limiting — that we limit care for our patients," says Hammes. But it's not that dying people in La Crosse are denied care, he says. It's that they've thought out their wishes in advance, so they get exactly the care they want. And often that means avoiding excessive and unwanted care.

When Hammes came to Gundersen Lutheran Health System as a clinical ethicist, he often found himself called in to help families who had suddenly found themselves in the middle of a health crisis. "When I asked these family members, 'what would your Dad want,' 'what would your Mom want,' 'what did they say to you previously?' The response was the same again and again and the response was, 'If I only knew.'"

Hammes realized the shortcoming of the common practice of handing patients a living will. People didn't fill them out. They gave up trying to figure out confusing issues like whether to withdraw a feeding tube — and when.

So Gundersen Lutheran started training its staff — as well as ministers, lawyers and others in the community — to help people understand — and make — those choices.

Hammes says the point is to help people make informed choices. Decisions made on the spur of the moment, in crisis, can lead to costly and unwanted care. If a patient's wishes aren't clear, the default choice of doctors and family is often to provide high levels of care — even when it's something unhelpful.

But sometimes, getting a patient to think through choices can mean the patient decides he or she does want the most expensive care.

The Option To Change Your Mind

Joe Hauser, who used to run a TV repair shop, recently found out his kidneys are failing. His doctor told him he's going to need dialysis, soon.

"I don't want to go on dialysis," he says, one recent morning as he takes his medicines with a glass of water at his kitchen table in the nearby town of Onalaska. "I don't want to be tied to a stupid machine for 15 hours a week. My main thing is I don't want to be a burden on anybody. I figure I'd love to live to be 150 as long as I can do stuff myself without depending on somebody else to do it for me. But once I get to I can't do nothing, I'd just as soon croak."

Joe's wife, Janice, sits next to him and shakes her head. She wants her husband to go on dialysis.

"Maybe I shouldn't say that," says Janice, "but I'm being optimistic about it anyway."

"See, good old Ma," says Joe. "She would like to keep me around here as long as possible."

"Well he's right," his wife says with an affectionate laugh. "Who else would put my eye drops in?"

So with some prodding from Janice, Joe recently talked to a nurse at Gundersen Lutheran about what it means to go on dialysis. Joe worried that once he started on dialysis, he wouldn't be able to stop. That's not how it works, said co-director Linda Briggs, a nurse in the Respecting Choices program.

Then Briggs invited Joe and Janice to visit the dialysis center and to drop in on a support group meeting, so they can talk to other patients.

Joe hasn't taken up the nurse on that. He says he still doesn't want dialysis.

But then there's a surprise. He extends his left arm across the kitchen table. He wants to show what he calls his "buzzer." It's a spot at his wrist where you can feel the vibration from an artery and a vein that a surgeon has joined together.

It turns out that Joe Hauser's decided to be ready, if he changes his mind. And if he decides he wants dialysis, then the needle of the dialysis machine can slip right in to that spot — the fistula — that the surgeon has prepared at his wrist.

And that gets to the point of why doctors and patients keep talking about end-of-life care in La Crosse: because choices are complicated. Because people's feelings change about the treatment they want. And the best way to handle that is to know all your options, well in advance of a health care crisis.

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MELISSA BLOCK, host:

In the city of La Crosse, Wisconsin, nearly every adult has created a plan for end-of-life care. It's the sort of idea that got twisted over the summer into angry talk of death panels. At issue then, it was a provision in health care legislation to pay for end-of-life counseling. And that provision is included in the House bill, which passed earlier this month.

NPR's Joseph Shapiro recently visited La Crosse to find out why it's often mentioned as a model for good end-of-life care that keeps costs down.

JOSEPH SHAPIRO: Sandra Colbert(ph) is in a hospital bed with plastic tubes feeding her oxygen and IV fluids. Sandra, 67 and a retired nurse, explains that today started as just another ordinary day.

Ms. SANDRA COLBERT: I had gone over to the Y this morning. I go over there Monday through Friday to do water aerobics and do some laps. And I had just unlocked my locker when it felt like my heart exploded.

SHAPIRO: Someone called an ambulance.

Ms. COLBERT: Oh, the pain was just horrendous. It was scary. I thought I was going to die there.

SHAPIRO: And she ended up in this room at Gundersen Lutheran Hospital in La Crosse. Doctors, a little while ago, told her it wasnt a heart attack, but they want to keep her overnight for observation. She's not going to die. Still, nurses are asking her to think about dying. Or more specifically, if she wants to fill out a living will.

Ms. LAURA WIEDMAN (Registered Nurse, Gundersen Lutheran Hospital): Hi, Sandra. My name is Laura Wiedman, and Im a nurse here at Gundersen Lutheran. And I understand that you're interested in completing an advance care document.

Ms. COLBERT: Yes.

SHAPIRO: It might seem almost rude to ask a woman who just a few hours ago had reason to fear she was about to die, but who now knows she's okay, to think about how she does want to die some day. Yet it's a routine question in this Midwestern city on the Mississippi River from a nurse like Laura Wiedman.

Ms. WIEDMAN: So what you're saying then, again, are two choices: Yes, my agent has the authority to have a feeding tube or IV hydration withheld or withdrawn

Ms. COLBERT: Yeah.

Ms. WIEDMAN: ...subject to the limitations. Okay.

Ms. COLBERT: Yeah.

SHAPIRO: They're complicated questions. The specially trained nurse will spend more than an hour with Colbert and her husband, Jim, and help them both think through the treatment they'd want at the end of life.

Sandra cries when she writes down that she wants each of her grandkids to speak at her funeral. But there's more laughter than tears.

Ms. COLBERT: And I would like to have, at the end of the ceremony, "Put Another Brick in the Wall." So

Ms. WIEDMAN: Pink Floyd?

Ms. COLBERT: You bet.

Ms. WIEDMAN: All right.

SHAPIRO: Sandra and Jim fill out the directives and sign them in front of witnesses. Then the nurse enters them in the health system's computers. Now, anytime a doctor in this large health system pulls up their records, their wishes for end-of-life care will be prominently displayed.

The result of all this attention is that nearly 100 percent of adults who die in La Crosse, 96 percent of them die with a completed advance directive. That's by far the highest rate in the country. And at Gundersen Lutheran, less is spent on patients in the last two years of life than any other place in the country.

Bud Hammes is the medical ethicist who started the program, it's called Respecting Choices.

Dr. BUD HAMMES (Medical Ethicist, Respecting Choices): When people see the low costs in La Crosse, you know, their assumptions about rationing care, about denying care, about limiting that we limit care for our patients.

SHAPIRO: Hammes says it's not that dying people in La Crosse are denied care, it's that they thought out their wishes in advance so they get exactly the care they want. And often, that means avoiding excessive and unwanted care.

Dr. HAMMES: In our community, I can say that these are choices, informed choices made by patients and their families about what they perceive and what they understand to be good care for themselves.

SHAPIRO: When Hammes came to Gundersen Lutheran Health System as a clinical ethicist, he often found himself called in to help families who'd suddenly found themselves in the middle of a health crisis.

Dr. HAMMES: When I asked these family members, what would your dad want? What would your mom want? What did they say to you previously? The response was the same again and again. And the response was, if I only knew.

SHAPIRO: Hammes realized the shortcoming of the common practice of handing patients a living will: People didnt fill them out. They gave up trying to figure out confusing issues like whether to withdraw a feeding tube and when. So Gundersen Lutheran started training its nurses, chaplains and social workers, as well as ministers, lawyers and others in the community to help people understand and make those choices.

All this is expensive. Medicare doesnt reimburse for nurses' time to do this. Hammes says it costs the hospital system millions of dollars a year.

Mr. HAMMES: We just build it into the overhead of the organization. We believe it's part of good patient care. We believe that our patients deserve to have an opportunity, at least, to have these conversations.

SHAPIRO: And that's how La Crosse unexpectedly got in the middle of the national debate over health care and the so-called death panels. There's a proposal that's in the health bill passed by the House of Representatives that would pay for the kind of periodic and continued end-of-life discussions with patients that are routine in La Crosse. Gundersen Lutheran is pushing for it.

Hammes says the claims that there would be government-run panels pressuring sick people to die are bizarre exaggerations and that the experience of this Wisconsin city proves that.

Mr.�HAMMES: These are conversations that we have with our patients. They're not done in a secret room. These are open conversations involving family members, pastors, attorneys. It's part of our community fabric now. It's part of how we deliver care.

Mr.�JOE HAUSER(ph): I think I'd take some pills to do stuff and then other pills to stop it.

(Soundbite of laughter)

SHAPIRO: Eighty-year-old Joe Hauser sits at his kitchen table and takes his morning medicines.

Mr.�HAUSER: There. All my rat poison is taken for the day, well, for a few hours anyway.

SHAPIRO: Hauser, who used to run a TV repair shop, recently found out his kidneys are failing. His doctor told him he's going to need dialysis soon.

Mr.�HAUSER: Well, yeah, I don't want to go on dialysis. I don't want to be tied to a stupid machine for 15 hours a week. My main thing is I don't want to be a burden on anybody. I figure I'd love to live to be 150 as long as I can do stuff myself without depending on somebody else to do it for me. But once I get to I can't do nothing, I'd just as soon croak.

SHAPIRO: Joe's wife, Janice(ph), shakes her head. She wants her husband to go on dialysis.

Ms.�JANICE HAUSER: Maybe I shouldn't say that, but I'm being optimistic about it anyway.

Mr.�HAUSER: See, good old Ma. She would like to keep me around here as long as possible.

Ms.�HAUSER: Well, he's right.

(Soundbite of laughter)

Ms.�HAUSER: Who else would put my eye drops in?

(Soundbite of laughter)

SHAPIRO: So with some prodding from Janice, Joe recently talked to a nurse at Gundersen Lutheran about what it means to go on dialysis. Joe worried that once he started on dialysis, he wouldn't be able to stop. The nurse in the Respecting Choices program told him that's not so. Then the nurse invited Joe and Janice to visit the dialysis center and to drop in on a support group meeting so they can talk to other patients.

Joe hasn't taken up the nurse on that. He says he still doesn't want dialysis, but then there's a surprise. He extends his left arm across the kitchen table.

Mr.�HAUSER: Now, see, if you was a girl, I'd say, hey, you want to feel my buzzer?

SHAPIRO: What Hauser calls his buzzer is a spot at his wrist. You can feel the vibration from an artery and a vein that a surgeon has joined together. It's called a fistula.

Ms.�HAUSER: It's interesting to feel it, a vein and an artery.

Mr.�HAUSER: It's in preparation for dialysis.

SHAPIRO: It turns out that Joe Hauser's decided to be ready if he changes his mind. If he decides he wants dialysis, then the needle of the dialysis machine can slip right into that spot the surgeon has prepared at his wrist.

And that gets to the point why doctors and patients keep talking about end-of-life care in La Crosse: because choices are complicated, because people's feelings change about the treatment they want, and the best way to handle that is to know all your options well in advance of a health care crisis.

Joseph Shapiro, NPR News.

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You are listening to ALL THINGS CONSIDERED from NPR News. Transcript provided by NPR, Copyright National Public Radio.

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