Why This Wisconsin City Is The Best Place To Dieby Joseph Shapiro
November 16, 2009
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http://www.npr.org/templates/player/mediaPlayer.html?action=1&t=1&islist=false&id=120346411&m=120470614Sandra 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.
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?
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.
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."
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.
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.
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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S C (SMichael)
S C (SMichael) wrote:
I am glad this article touched on funeral music; a very important and fun aspect of death planning! Anyone can create their own "Last Playlist" and share it with friends and family at
http://www.songsatmyfuneral.tumblr.com.
Monday, November 16, 2009 7:09:37 PM
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mutant buzzard (mutant)
mutant buzzard (mutant) wrote:
Lets coin a better phrase than "death pannels" for the buracrats who will be deciding who is worthey of obamacare, how about "mercy pannles"? Just because some uncaring bean counter on a pannel will be deciding that we can't aford to pay for life saving care of some old gezer that is no longer of value to liberals, well its just not fair to call them "death pannels".
Monday, November 16, 2009 6:55:40 PM
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michael reed (hogman)
michael reed (hogman) wrote:
Oh, and we obviously are all too stupid to find this information and care without a mandate from the federal government? Is that your point here, or what? (BTW, pretty much every street corner has a Hospice, every church a counselor and every doctor a set of information and referrals... all available without 1,994 pages of instructions). This information or level of care is rare? No, it's just a great way for NPR to promote Obamacare to the ignorant.
Monday, November 16, 2009 6:52:08 PM
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Anthony Waters (Watersisland)
Anthony Waters (Watersisland) wrote:
A very comprehensive and well connected story. Kudos to the LaCrosse WI hosp. for having the courage and sense to implement such a plan, and to the writer Joe Shapiro for presenting it to us in such understandable terms.
While I have always believed that only God should decide when I pass on, I also believe it's agonizing to self,and families and a terrible waste of resources to postpone the inevitible. If I can recover to the extent of being able to learn and grow some more, I want the best of care. If all I am is a burden for others to have arrange their lives around, and a cash cow for additional medical procedures, then there is no purpose to my remaining on earth. Who shall decide? I shall decide. Only I will know when I believe MY life is complete. For the WI hosp. to initiate the topic, I beleive it helps make the issue easier for the patient to address, and also gets one to start evaluating when life is no longer capable of producing any desirable results.
Monday, November 16, 2009 6:36:16 PM
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m fellion (michael1)
m fellion (michael1) wrote:
If one nurse is doing it in this hospital how does the cost suddenly become millions? If we pay each nurse 60,000 a year plus benefits of 20,000 millions is a lot of nurses and hangers on. One nurse could visit every patient in this hospital in two days tops. Somebody is spreading a lot of costs onto this program and calling it good medicine. In any case end of life directives can help relatives decide what to do when we arrive at the time to die.
Monday, November 16, 2009 6:29:28 PM
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Joe Jones (JJJ2)
Joe Jones (JJJ2) wrote:
"A good place to die" is where the dier decides. It's not up to you.
My partner of 20 years wanted to die in our bed. I'm glad it didn't work out that way, looking back. I'm not sure I could stand it. But inpatient hospice was an immeasurable gift.
Monday, November 16, 2009 5:21:49 PM
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James Wescott (Wescott)
James Wescott (Wescott) wrote:
This is a great plan. Hooray for Wisconsin. Too many people get sick suddenly and wind up on a ventilator for the rest of their lives. But how long is that? Two days or 10 years? Too many people have lost their homes, property and children's inheritance to gigantic hospital bills.
Sarah Palin and the ultra Right Wing tried to vilify this process as a death panel -- I hope people realize how stupid that was.
Monday, November 16, 2009 5:16:50 PM
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R D Harmony (homebuilding)
R D Harmony (homebuilding) wrote:
Sounds good.
Now where is that 12 page form -- for all of us?
I want to complete a copy for myself, my family, my doctor, and for my safe deposit box
Monday, November 16, 2009 5:01:56 PM
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republican shmepublican (pc_myass)
republican shmepublican (pc_myass) wrote:
It's pathetic how deeply attached to catch phrases some Americans have become. "Death panels' is just one. No intelligent, mature understanding about the fact that everyone dies! To those who bring a decent, dignified approach to this 'taboo' subject, I say, "You are ahead of your time, and pioneers! By bringing these sane and important questions into the open, you do us all an indispensable service. I applaud and salute you!"
Monday, November 16, 2009 4:46:42 PM
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Will kimbrough (willvis)
Will kimbrough (willvis) wrote:
My death paneling would be a dark oak veneer, with glossy finish. Like an old fashioned gentlemen's club. Classy.
Monday, November 16, 2009 4:44:53 PM
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