Episode 521: The Town That Loves Death : Planet Money On today's episode, we'll take you to a place where dying has become acceptable dinner conversation. A place that also happens to have the lowest healthcare spending of any region in the country.
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Episode 521: The Town That Loves Death

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Episode 521: The Town That Loves Death

Episode 521: The Town That Loves Death

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NOEL KING, HOST:

Hey, guys. It's Noel here. Today's episode is a rerun. It was originally reported by Chana Joffe-Walt back in 2014, and we have an update for you at the end. OK, here goes.

(SOUNDBITE OF ARCHIVED BROADCAST)

CHANA JOFFE-WALT, HOST:

Betty and George are planners, Betty especially. Years ago, Betty looked around and identified George Phillips as someone she would probably marry in the future. He was a truck mechanic, same background, sense of humor. So Betty made a plan, and four years later, George Phillips quite happily became Betty's husband.

George and Betty planned to shovel the snow on Saturday, to call Betty's brother on Tuesday - after 6 but before 8 o'clock - to finish the 1,000-piece puzzle on the card table immediately after Betty has finished organizing the pieces into piles by color. And Betty has a plan for her death.

BETTY PHILLIPS: Oh, I have, yes, a long time ago. Yeah. I even made my funeral arrangements.

JOFFE-WALT: It's all written up in some paperwork filed in her home with duplicates at the hospital. The papers, called an advanced directive, spell out exactly how Betty would like to die - no machines, no feeding tubes, no CPR - and what she'd like to have happen afterwards. Betty's not sick, she just wants everyone to know what she'd like to have happen. George has one, too.

GEORGE PHILLIPS: Oh, yes. Yep. Yeah. I fixed one up in 2004, yeah.

B PHILLIPS: It's a very good idea.

G PHILLIPS: And we don't want to be kept alive just to be a vegetable. You know, she feels about like I do. Neither one of us want chemotherapy.

JOFFE-WALT: Do you guys have cancer? Why were you talking about chemo?

G PHILLIPS: No, but...

B PHILLIPS: No. We don't...

G PHILLIPS: ...In case we do, you know.

JOFFE-WALT: Like I said, planners. Betty and George live in La Crosse, Wis. It's a town of 50,000 people on the Mississippi River, right next to Iowa and Minnesota. And it shares a lot in common with other towns that size in America, except for one thing. A lot of people in this town have planned for their death. They have written down instructions of what they do and don't want to have happen at the end of their lives. And this is not just planners like Betty and George, not just people in their 80s - 96 percent of the people who die in La Crosse have planned for their death. That is an astounding number.

Across the country, about 30 percent of adults have done some sort of end-of-life planning. And even if you look at severely ill people, it's only about half. Ninety-six percent here, which means you can go to any random block in this town and stand a pretty good chance of talking to someone who has considered how he or she would like to die. Like, just across the street from Betty's house, Al and Jean, they made plans for the end of their lives years ago. Next door, Sondra LeGrand tells me she and her husband, they've made most of the medical decisions. But they've been going back and forth lately about the burial question.

SONDRA LEGRAND: He wanted to have his body in the ground. And then he said, well, maybe I want to be cremated. So we both were thinking of cremation inside the mausoleum there. And then we both decided, no, maybe we'll just be buried in the ground in the urns, you know, after being cremated.

JOFFE-WALT: And that's where they left it when they filled out the paperwork. But Sondra says cheerily, we can always change it. These kind of plans are common enough that it's when someone does not do it, that's when you notice. In the course of our conversation, Sondra mentions the Ericksons. Other people on the block mentioned the Ericksons to me, too. The Ericksons have not filled out their advanced directives. And Sondra LeGrand told me she's been on them about it.

(SOUNDBITE OF KNOCKING)

JOFFE-WALT: Katherine Erickson was putting away her yoga mat when I showed up on her doorstep. She and her husband Randy were chatting with their daughter about her homework. And I kind of awkwardly mentioned that they have a rap on the block for neglecting to make end-of-life plans. They both laughed and said, oh, yeah, the LeGrandes have been nagging us about that for a while.

RANDY ERICKSON: Well, we're having dinner with the LeGrandes tomorrow, and maybe we should bring over our forms and have them witness.

(LAUGHTER)

KATHERINE ERICKSON: They will definitely ask us again about it, I'm sure.

JOFFE-WALT: Their sparkly-eyed teenager Annie says, it's OK. We've talked about all that stuff before. I know what to do.

ANNIE ERICKSON: I know for sure if my mom is ever stuck in a coma that - and there's no hope for her, that she just wants me to pull the plug and probably my dad, too. So (laughter)...

JOFFE-WALT: Is she right?

ERICKSON: Yes.

ERICKSON: Yeah.

JOFFE-WALT: I feel like the teenager talking to Annie, and actually, everyone in La Crosse. Asking strangers questions about death makes me uncomfortable because I'm from the America where talking about death is like talking about sex - you don't do it, at least not a lot and definitely not on some random Wednesday evening with your parents. But Annie happens to be from this one tiny pocket of America that just does death differently. This conversation, by the way, in the Erickson household, it just kept going. Everyone in this house is perfectly healthy, but they seem to kind of get into talking about this stuff. Annie starts detailing her plans for her dad's funeral.

ERICKSON: Well, for my dad, I do have a song in mind already...

(LAUGHTER)

ERICKSON: ...Which is kind of strange, I know. But it's Bruce Springsteen's "Terry's Song."

JOFFE-WALT: Why have you thought - why have you already picked one out for your dad?

ERICKSON: I don't know.

ERICKSON: It's a good funeral song. You know, it's a...

ERICKSON: Yeah.

ERICKSON: ...I mean, and the funny thing is it's like a hidden track on one of his CDs.

JOFFE-WALT: I feel like you're totally missing the point of this question.

(LAUGHTER)

JOFFE-WALT: I'm not evaluating...

ERICKSON: Once you get him talking about music, he's done.

ERICKSON: Yup.

JOFFE-WALT: I'm not assessing the value of the song as a funeral song. Why have you, at 17, imagined your dad's - the song that you'll sing at your dad's funeral?

ERICKSON: I'm not actually sure how it's become such a comfortable conversation (laughter).

JOFFE-WALT: How, indeed, did this become such a comfortable conversation in La Crosse, Wis.?

Hello, and welcome to PLANET MONEY. I'm Chana Joffe-Walt. And on today's show, we are going to answer that question with the story of the one place in America that is at ease with mortality. And we're also going to talk about how being comfortable with mortality can save a lot of money.

(SOUNDBITE OF DANIEL O'DONNELL-SMITH, JONATHAN PHILIP DIX AND VANCE WESTLAKE SONG, "SEE THE FUTURE")

JOFFE-WALT: La Crosse, Wis., used to be like everywhere in America, awkward and fearful about death. Couples did not go back and forth about cremation versus burial at the dinner table like they were talking about which movie to see. Neighbors didn't gossip about the one family on the block that had not planned for its demise.

The people of La Crosse discuss death right now because one guy decided the town needed to be talking about it because if they were not talking about it, he was the one who ended up having to do it - have these awkward, painful conversations with everyone. This guy's name is Bud Hammes. He works at the local hospital as a medical ethicist, which basically means Bud was the guy who would get called when someone's dad had a stroke and was being kept alive on machines. Bud would sit down with the family and try to help them figure out what to do next. And every time, he says, the discussion was excruciating.

BUD HAMMES: Well, you could see it, you know, on the face, the anguish. Like, oh - I mean, you could just - in the comments that they would made, you know, how - what do you think Mom would want? I don't know. Did Dad ever say anything to you? I don't know what to do here. And that's why I was called in to help these families at least sort this out as best as they can.

The moral distress that these families were suffering was palpable. You could feel it in the room. And that - no matter what they decided, they would never have any clarity about whether they made the right decision.

JOFFE-WALT: The thing that was especially maddening to Bud about these conversations was that they were entirely predictable. Most of the time, the conversation would be about a patient who had been sick for years, who had been coming to the hospital over and over again, sometimes multiple times a week.

HAMMES: I found it distressing that we were taking care of patients and not giving them any opportunity to have a voice in their care should they become incapacitated.

JOFFE-WALT: Take the dialysis center at Gunderson Health Systems, where Bud worked, the hospital. There were 60 people in the dialysis center. Only two of the 60 had living wills or advanced directives that specified if they wanted to be kept alive on machines. And for the people in the dialysis center, this was likely to be a real question, potentially in the near future.

So that's where Bud started, in the dialysis center. He started with the nurses. He gave them all training on how to ask every person to complete an advanced directive - how to sit with patients and go through questions like, if I have a stroke, do I want to go on a ventilator or not? If I can't do this or that, do I want to stay on dialysis? So the nurses all got trained, and then a month went by. Not a single nurse asked a single patient. It was just too scary. So Bud asked one brave nurse to be the first, to be the model for all the other nurses and show everybody this was not going to be a big deal, the patient would be open to it. And Bud watched what happened.

HAMMES: So the nurse assigned to this responsibility approached the patient, and the patient started to cry. And her response was, I don't think I'm ready to have this conversation. So the nurse did the right thing and said, well, that's fine. If you change your mind, let us know and then we can have the conversation.

JOFFE-WALT: It didn't seem like a success at that moment. But eventually, the patient did come back to the nurse and said she was ready. And other nurses started to be ready too. They started asking patients. And actually, the other hospital in La Crosse asked Bud to come and work with the nurses there to train people how to talk about end-of-life care. Verona Lockman, a nurse in the general surgery unit at Gunderson, the hospital where Bud works, she told me she had to practice saying the words to herself, over and over again, before she could finally approach a real-life patient. And then she did.

VERONA LOCKMAN: And one of the surgeons came up afterwards and said, I don't want you talking about advanced care plan with my patients before they have surgery. It's like they're going to die, and I don't want them thinking they're - it was nothing like that. But a lot of people struggled with that.

JOFFE-WALT: That, of course, is the whole point. It's difficult to talk about. So the more you talk about it, the more routine the question is, the more comfortable it is to be asked. And in La Crosse, you were asked again and again and again.

UNIDENTIFIED WOMAN: So Debbie (ph), you're going to have surgery. And what are you going to have done?

DEBBIE THURSTON: Hysterectomy.

UNIDENTIFIED WOMAN: Yep, that's what we have here, too. And who's your doctor?

THURSTON: Stephens.

UNIDENTIFIED WOMAN: Dr. Stephens. OK.

JOFFE-WALT: Debbie Thurston (ph) is in her 30s with red hair, a red face, red sweatshirt. She's not sick, but she will be asked if she wants to fill out an advanced directive here, during her pre-op.

UNIDENTIFIED WOMAN: So have you ever done anything like a living will?

THURSTON: No, I haven't.

UNIDENTIFIED WOMAN: No? OK.

JOFFE-WALT: Debbie says she's not interested right now. Tomorrow, if she becomes interested, she'll have another opportunity. She'll be asked again when she comes in for her surgery. Debbie actually tells me the last time she had a procedure at the hospital, someone left the paperwork by her bedside.

THURSTON: Every time I come to the hospital, they ask me (laughter). I just haven't done it.

JOFFE-WALT: And what do you think when they ask you about it every time?

THURSTON: That it's a good thing - I just don't - I like to think I'm young and I'm going to need it (laughter).

JOFFE-WALT: Even though Debbie is saying no right now, she will almost certainly fill out the paperwork before she dies, which, hopefully, will be many years from now. But if you think about it, 96 percent of the people who die here have one. Imagine how many more times Debbie will be asked. All that nagging eventually leads to follow-through. In La Crosse, even if it takes you until you are actually confronting a life-ending illness to take a look at these questions, it won't be the first time you're considering them. It won't be the first time you're thinking about all the choices you have to make about the way you want to die.

GLENN MUEHLENKAMP: Make yourself at home.

JOFFE-WALT: OK.

G MUEHLENKAMP: Beautiful morning, isn't it?

JOFFE-WALT: Yeah, it's gorgeous.

G MUEHLENKAMP: Cool out there, though, I bet you.

JOFFE-WALT: Glenn Muehlenkamp is a cheery, 81-year-old farmer sitting on his favorite recliner at home, and he's dying. Glenn's prostate cancer has spread to his bones. He's in hospice. A nurse from the hospital, Laura Wiedman, is here to help him fill out his advanced directive. Glenn's wife Jenny is flitting about showing Laura, the nurse, pictures of every one of her 27 grandkids. And Laura, the nurse, masterfully guides Jenny to a chair next to Glenn to have a conversation Jenny clearly does not want to have.

LAURA WIEDMAN: You know, when people have a chronic illness like you have, sometimes complications can occur. There could be a point where you might not be able to speak for yourself.

JOFFE-WALT: Jenny, Glenn's wife, is sitting on the edge of her chair, rocking back and forth. Her head is turned sideways, away from Glenn and Laura. Her eyes are locked on a window. And Laura, the nurse, is mostly talking to Glenn. But it's by design that his wife is here, too. It's impossible for her to cover all the scenarios under which Glenn may die, so the more specifics she can get from Glenn for his wife, Jenny, to hear him say, the better.

So Laura, the nurse, starts ticking through some options listed on a stack of paper. She starts, OK, if your cancer spreads and you reach a point where the treatments will extend your life by a few months and the side effects are pretty serious...

WIEDMAN: Would you want them to continue to do all of that, or would you say no, stop?

G MUEHLENKAMP: Stop.

WIEDMAN: OK. If you had a serious complication from your cancer but you'd probably live through the complication, you would probably not walk again or you might not be able to talk again, what would you choose them to do? Continue to do everything they possibly can for you or would you say no, stop?

G MUEHLENKAMP: I'd say no, stop.

JOFFE-WALT: Glenn's wife Jenny's eyes are still locked on the window. She's still rocking, but she has started silently weeping. Laura, the nurse, puts a hand on Jenny's knee but forges ahead.

OK. Same scenario, she says. You'd survive, but you'd never know who you are.

WIEDMAN: Would you want them to continue to do everything for you, or would you want them to stop?

G MUEHLENKAMP: Stop. Because I've seen that where they're just there.

WIEDMAN: They're just there.

G MUEHLENKAMP: Yeah.

G MUEHLENKAMP: And that's not for you?

G MUEHLENKAMP: No, no.

WIEDMAN: OK.

JOFFE-WALT: Jenny, Glenn's wife, actually gets up and walks away at this point. Glenn doesn't stop her and neither does the nurse, Laura.

Have you had enough of this conversation?

JENNY MUEHLENKAMP: (Laughter) I just had to get up and see what was going on.

JOFFE-WALT: Jenny looks around, kind of aimlessly surveying the house. And then she mumbles.

J MUEHLENKAMP: It's a big house to keep up.

JOFFE-WALT: In the other room, the nurse and Glenn finish up the plan for the rest of Glenn's life - no machines, no feeding tubes, no ventilator, no CPR.

Stop, stop, stop, stop. There are few places where you'd find this kind of conversation happening regularly. And the conversations actually help explain this other salient fact about La Crosse, something I haven't mentioned yet but is also very unusual. La Crosse, Wis., spends less on health care than any other place in the country. That comes from a group of researchers at Dartmouth College. They study the huge variation in health care spending between what Miami spends versus Grand Junction, Colo. Miami's at the top. La Crosse, Wis., is at the very bottom of the list. Of the 306 regions in the Dartmouth data, La Crosse spends less on each person on Medicare than anywhere else in America. That's not only because of these conversations about death, but it's a big part of why. One-quarter of health care spending is on the last year of life. And planning for death saves money because most people are like Glenn. When asked ahead of time about their dying days and how they want things to go down, they say stop, stop, stop, stop. Here's Jeff Thompson, the CEO of Gundersen Health System, the hospital where Bud Hammes works.

JEFF THOMPSON: It turns out that if you allow patients to choose and direct their care and that you share that information with their families, then, often, they choose a course that is much less expensive than if people just had to guess.

JOFFE-WALT: Bud Hammes and Jeff Thompson are panicked that I am going to make it sound like this is why La Crosse has its advanced care program. So let me clearly say here it is not. In fact, if you're Jeff running a hospital, this doesn't make any sense. Hospitals get paid for doing things. There's a billing code for a hysterectomy, for a hip replacement. There's a billing code for aspirin. There's no billing code for advanced care planning.

How do you pay for that program here?

THOMPSON: Well, I really can't answer that because that is not a good sign of a CEO because, of course, we lose money on this program. This program makes no economic sense for anyone taking care of Medicare patients on a fee-for-service basis.

JOFFE-WALT: So Jeff can't bill for it. It does save money to do this kind of planning, but it saves Medicare money. It saves insurance companies money, not Jeff. One-quarter of health care spending is on the last year of life. That spending - that goes to hospitals and doctors.

THOMPSON: For us, we spend money on a program that ultimately will decrease our revenue stream.

JOFFE-WALT: That robs you of money later.

THOMPSON: Right, right. But it's clearly the right thing to do.

JOFFE-WALT: That is a lot of money, though, that you're leaving on the table.

THOMPSON: Yes, you are right.

JOFFE-WALT: Jeff says they do it because it's the right thing to do for patients. And frankly, he tells me, I wasn't here at Gundersen when they started doing advanced care planning. But if I tried to take it away now, he says, the community would revolt. This is just how we do things. Still, you can see why most hospital CEOs may find a program they'd have to run for free, that would almost assuredly reduce one of the hospital's largest revenue streams - you could see why they might find that unattractive.

But still, there must be someone in Washington who would try to push through an idea that is relatively simple to implement and proven to save money - right? This is the thing Congress and president after president has tried to do, reduce health care spending. You'd think there'd be someone who would want to make this happen - right? Well, there was. You might remember in 2009 the phrase death panels was in the news a lot. That year, Gundersen, the La Crosse hospital helped write something for the health reform bill that would pay people for doing advance care planning with patients, and this is what happened.

(SOUNDBITE OF TV SHOW, "HANNITY")

SARAH PALIN: Bureaucrats who will ration care if the bill goes through as Obama wants it to go through.

JOFFE-WALT: Governor Sarah Palin warned that the government was going to start rationing care and was going to decide who could get care and who could not. It was wildfire.

(SOUNDBITE OF TV SHOW, "FOX AND FRIENDS")

BRIAN KILMEADE: Are seniors going to be in front of a death panel?

(SOUNDBITE OF TV SHOW, "ANDERSON COOPER 360")

ANDERSON COOPER: Pulling the plug on grandma or denying her care.

(SOUNDBITE OF ARCHIVED RECORDING)

UNIDENTIFIED MAN: Sarah Palin has rocked them with that one because she's dead right. They are death panels.

JOFFE-WALT: It's weird. The fact that end-of-life planning could save money, you'd think that would have popularized the approach in a country where a sixth of the economy is health care spending. But in 2009, it was actually probably why it did not become more widespread. It was a bug not a feature. Health care reform passed without the death panels that were not really death panels, whatever death panels actually means. But the law did include financial rewards for hospitals or physician practices that could figure out how to reduce spending on their own.

So a lot of them are naturally turning to La Crosse, trying to figure out what they're doing. And they're reaching out to Bud Hammes to ask him, how do we get people to plan for death?

HAMMES: We can hardly handle the calls coming in.

JOFFE-WALT: Bud told me, when he first started this in La Crosse in the 1990s in the dialysis center, he'd thought it'd take a year, maybe, to get it set up and started in the region and then maybe a few more years for it to spread throughout the country. Twenty years later, Bud is putting off retirement because he's pretty sure this is the moment. This is when it's finally going to happen.

(SOUNDBITE OF CHIELI MINUCCI AND EMANUEL KALLINS', "MABEL AND ME")

KING: It's Noel here again. Two big things in this story have stayed the same, and one has changed. As Chana said, about a quarter of all Medicare spending happens in the last year of a person's life. That figure hasn't budged and neither has Bud. He is still not retired yet.

HAMMES: No, this change will keep me working at least for a few more years. When I'm able to make this transition from one home to another, as it were, and we have in place the next group of leaders, I'll be happy to step down.

KING: The transition he's talking about? That is the big change. The end-of-life planning program looks like it may have finally expanded beyond La Crosse.

HAMMES: The program is going to move to a national coalition called the Coalition to Transform Advanced Care. And so we think this is going to be a better home for us because it will really tie us in to a national platform.

KING: Bud says it's even spreading worldwide. The EU is funding a study called the Action Trial that'll test a version of the La Crosse program in six countries, including Germany and the Netherlands.

That's our show for today. We always love to hear what you guys think. You can email us at planetmonet@npr.org or get in touch on Facebook or Twitter. This episode was originally produced by Phia Bennin. Today's episode was produced by Rhaina Cohen - thanks, Rhaina.

Also, you can take PLANET MONEY and all of your favorite NPR shows with you on your commute or while making dinner with NPR One. It's an app for your phone, kind of like the Pandora of public radio. Whenever you want to listen, NPR One is full of news, local stories and podcasts, including PLANET MONEY. Find it on your app store, NPR One.

I'm Noel King. Thanks for listening.

(SOUNDBITE OF CHIELI MINUCCI AND EMANUEL KALLINS', "MABEL AND ME")

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