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鈥檛 have a heart attack. But it sure felt that way when she collapsed at the gym a few hours earlier. 鈥淚t felt like my heart exploded,鈥 she says, then adds. 鈥淚 thought I was going to die.鈥
She鈥檚 not going to die, the doctor reassured her. But now nurses are asking her to think about dying. Or, more specifically, they鈥檝e asked her to fill out a living will.
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It might seem almost rude to ask a woman who just a few hours ago had reason to fear she was about to die 鈥 but who now knows she鈥檚 OK 鈥 to think about how she does want to die some day. Yet it鈥檚 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 鈥 and her husband Jim 鈥 and help them both think through the treatment they鈥檇 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鈥檛 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?
These are complicated questions. It鈥檚 something that the Colberts 鈥 like most adults in this country 鈥 have put off. But after Sandra鈥檚 scare today, and Jim鈥檚 hospitalization with a head injury this summer after he fell off an electric bicycle, it鈥檚 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鈥檚 more laughter than tears. Sandra says she wants Pink Floyd鈥檚 鈥淧ut Another Brick in the Wall鈥 and Ricky Martin鈥檚 鈥淟ivin鈥 la Vida Loca鈥 played at her funeral. Jim jokes that he鈥檒l write down in his advance directive which of his daughters really was his favorite 鈥 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鈥檚 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鈥檚 by far the highest rate in the country.聽
But it鈥檚 expensive to spend time with patients filling out living wills. Medicare doesn鈥檛 reimburse for the time the hospital鈥檚 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. 鈥淲e just build it into the overhead of the organization. We believe it鈥檚 part of good patient care. We believe that our patients deserve to have an opportunity at least to have these conversations.鈥
And that鈥檚 how La Crosse unexpectedly got in the middle of the national debate over health care and the so-called 鈥渄eath panels.鈥
A New Standard Of Care
There鈥檚 a proposal 鈥 it鈥檚 in the health bill passed by the House of Representatives 鈥 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 鈥 and that the experience of this Wisconsin city proves it. 鈥淭hese are conversations that we have with our patients. They鈥檙e not done in a secret room,鈥 Hammes says. 鈥淭hese are open conversations involving family members, pastors, attorneys. It鈥檚 part of our community fabric now, it鈥檚 part of how we deliver care.鈥
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鈥檚 more than $75,000.
鈥淲hen people see the low cost in La Crosse, there are assumptions about rationing care, about denying care, about limiting 鈥 that we limit care for our patients,鈥 says Hammes. But it鈥檚 not that dying people in La Crosse are denied care, he says. It鈥檚 that they鈥檝e 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. 鈥淲hen I asked these family members, 鈥榳hat would your Dad want,鈥 鈥榳hat would your Mom want,鈥 鈥榳hat did they say to you previously?鈥 The response was the same again and again and the response was, 鈥業f I only knew.鈥欌
Hammes realized the shortcoming of the common practice of handing patients a living will. People didn鈥檛 fill them out. They gave up trying to figure out confusing issues like whether to withdraw a feeding tube 鈥 and when.
So Gundersen Lutheran started training its staff 鈥 as well as ministers, lawyers and others in the community 鈥 to help people understand 鈥 and make 鈥 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鈥檚 wishes aren鈥檛 clear, the default choice of doctors and family is often to provide high levels of care 鈥 even when it鈥檚 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鈥檚 going to need dialysis, soon.
鈥淚 don鈥檛 want to go on dialysis,鈥 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. 鈥淚 don鈥檛 want to be tied to a stupid machine for 15 hours a week. My main thing is I don鈥檛 want to be a burden on anybody. I figure I鈥檇 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鈥檛 do nothing, I鈥檇 just as soon croak.鈥
Joe鈥檚 wife, Janice, sits next to him and shakes her head. She wants her husband to go on dialysis.
鈥淢aybe I shouldn鈥檛 say that,鈥 says Janice, 鈥渂ut I鈥檓 being optimistic about it anyway.鈥
鈥淪ee, good old Ma,鈥 says Joe. 鈥淪he would like to keep me around here as long as possible.鈥
鈥淲ell he鈥檚 right,鈥 his wife says with an affectionate laugh. 鈥淲ho else would put my eye drops in?鈥
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鈥檛 be able to stop. That鈥檚 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鈥檛 taken up the nurse on that. He says he still doesn鈥檛 want dialysis.
But then there鈥檚 a surprise. He extends his left arm across the kitchen table. He wants to show what he calls his 鈥渂uzzer.鈥 It鈥檚 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鈥檚 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 鈥 the fistula 鈥 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鈥檚 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.