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Week of 10.9.09

Transcript: Life Panel? Death Panel?

BRANCACCIO: Many of the folks out there who have, shall we say, considerable life experience, say they are worried that healthcare reform might mean rationing or cut backs in care. Well, we wanted to drill down on exactly what "end of life" care means. Senior Correspondent Maria Hinojosa went to see a hospital in Wisconsin that has been at the center of the debate in Washington over so called "death panels." What she found may surprise you. Brian Epstein produced our report.

HINOJOSA: On this sunny, fall day 56 year old Sue Hessel is on a mission here in La Crosse, Wisconsin...to raise money for breast cancer research...it's a cause that matters a lot to her—three months ago Sue was diagnosed with breast cancer. Walking she says keeps her spirits up. And Sue has managed to hold on to her sense of humor, too—even when talking to her doctor.

SUE: What she said was, "Because of your ethnicity we think we need to go a step further and do a breast MRI." And I go, "My ethnicity?" And she goes, "Didn't you know that Ashkenazi Jewish women were at higher risk for breast cancer?" At which point I go, "I'll convert."

HINOJOSA: Today Sue and her husband Dick are having a meeting with Nurse Linda Briggs at Gundersen Lutheran Hospital. It's called an end of life planning session. They'll be talking about what to do if Sue finds herself near death.

LINDA BRIGGS: I work with patients, especially who have serious illnesses like yours, Sue's, or patients with chronic illnesses who may have complications from their illness —that could leave you unable to make your own health care decisions. I'm gonna start with what you understand about your cancer.

SUE: First of all, I wish I didn't have it.

LINDA BRIGGS: Yeah.

SUE: But—it's Stage 3A. So—and that's because I had node involvement. I have six nodes involvement. But they still tell me it's treatable. And hopefully, you know, I'm gonna be around for a long time and we won't need this for a long, long time.

LINDA BRIGGS: Absolutely, absolutely.

SUE: That's the goal.

LINDA BRIGGS: Absolutely. But if we don't plan for some of those events, people get themselves into these kinds of situations.

HINOJOSA: We were granted extraordinary access to conversations like this one, that some people are now calling "death panels." The controversy started with a small provision in the house health care bill that would ensure doctors are paid for having these kinds of conversations. Opponents of health care reform went after the provision. They began to accuse the government of intruding into people's private decisions about medical care.

SENATOR CHARLES GRASSLEY, IOWA TOWN HALL EVENT: "We should not have a government program that determines who's gonna pull the plug on grandma."

HINOJOSA: They argued that the goal of these conversations was to deny care to the sick and elderly...all to cut down on health care costs. We came here to Gundersen Lutheran hospital in La Crosse, Wisconsin to meet a soft spoken medical ethicist named Bud Hammes...his program is at the center of the debate.

BUD HAMMES: Some people would say they are about death, and people don't want to talk about death...

HINOJOSA: Talking and thinking about death, and the best way to approach it is what Bud Hammes does for a living. Beginning twenty years ago he created one of the first comprehensive programs in the country for end of life planning. And now he wants to set the record straight.

When you hear these words, "death panel" that have now become part of the lexicon, what goes on for you?

BUD HAMMES: Sadness. Sadness because that distortion has created fear for I think no good reason.

HINOJOSA: Hammes says his program is not about denying care; it's about empowering individuals to make choices about their own medical treatment. What Hammes is asking is for people to think about their quality of life near the end of their life. For example, if you are in a vegetative state, would you want extraordinary measures taken to keep you alive?

BUD HAMMES: Our technology and our medical treatments can do wonderful and amazing things for people, but at some point, the good that they do won't be enough compared to the harm and the suffering that they will inflict. At some point in each of our lives, that balance of doing good and harm will be such that the harm is higher.

HINOJOSA: It was back in the mid 1980s when Hammes first saw this with patients who were on dialysis due to kidney failure. These patients had suffered complications that caused severe neurological damage, leaving them with little quality of life. The dilemma for the patients' families was whether to continue treatment and keep their loved ones alive or to stop and let them die. Talking to the patient's families, Hammes said the same question always came up.

BUD HAMMES: If your mother could know what you know, and if your mother now could decide for herself, she can't, but if she could, what would she tell us? And they would look at me and say, "We don't know." And they ultimately would say, "If we only knew." And so as I looked at this from an ethical and a human point of view, I thought, what a terrible place for a family to be. Because whatever decision they make, they will always wonder, did we do the right thing?

HINOJOSA: Hammes believed that what was missing was the patients' voice. So he set out to change that by asking people when they were still healthy about how they might feel when they got sick. He calls this end of life planning program Respecting Choices. The program encourages patients to have more extensive discussions, like the one Sue Hessel is having, when they are facing serious illnesses.

SUE: First of all, I do have to say I don't wonder, "Why me?" I wonder, I just "Why not me," because I don't think anybody has the right to say it shouldn't be him or her. It just, you know, we're not all that good that we should think that we can avoid something. But—oh, it's true, don't you think?

HINOJOSA: Over the two hour long conversation we witnessed many emotions...the hardest moment was Sue and Dick delving into their past and the sad story of their oldest son. Matt was 8 years old, dying from Leukemia, when they made the decision to take him off of life support.

DICK: I think what I learned was that when you don't have a choice, you find strength.

LINDA BRIGGS: Well, I can't help but think about how what you're going through is clearly making you remember that very painful time in your life, you guys, yeah, yeah.

HINOJOSA: Dick realizes that there is a chance he might have to make that same decision for his wife one day. That's why they are documenting her wishes by creating a living will. At one point during the session, Nurse Linda Briggs asks a series of hypothetical questions...

LINDA BRIGGS: If you have a serious complication from your cancer or treatment for your cancer, and you were facing a prolonged hospital stay requiring on-going medical interventions and your chance of living through the complication was low, and by low we mean five out of 100 patients would live. I'm just gonna stop there and—and ask you to tell me in your own words what that situation means to you, what it says.

SUE: Well, it sounds like a condi—I'm not likely to survive, obviously. And it sounds like—prolonged misery, potentially. I do wonder how we get five out of 100 patients.

LINDA BRIGGS: Five out of 100 is the general number that's given for low.

SUE: Is it—okay.

LINDA BRIGGS: Now, that may or may not be low to you.

DICK: I would—I would take that chance. Personally, for me—

SUE: Would you?

DICK: Sure.

LINDA BRIGGS: Uh-huh. To—to continue?

DICK: Yup.

LINDA BRIGGS: To continue.

HINOJOSA: While Nurse Briggs isn't looking for any definitive answers today, the scenario illustrates just how tricky it is to make life and death decisions based on probabilities of what might happen.

SUE: I agree with you, I think I'd probably more in the unsure at this point. Because unsure is to say, "Let's—let's see how it—how it—how it—"

DICK: I mean, is this—a chance to return consciousness, or is this going to be—in a coma?

SUE: Right.

LINDA BRIGGS: Exactly.

SUE: Right.

HINOJOSA: Nurse Briggs points out that she is asking ambiguous questions because that's what these scenarios usually are—ambiguous—-still, Sue tells us later that she finds the conversation not only important, but necessary.

So you think that Americans should be talking a lot more publicly about death?

SUE: Yes. I do. But it's not—it's—it's not like everybody needs to talk about it and doom and gloom all the time. What we're really talking about is feeling comfortable when you need to talk about it so that you can live your life well as long as you have it.

HINOJOSA: So when you hear these terms being thrown about—

SUE: Death panel?

HINOJOSA: —about meeting—yeah, death panel. About the meeting that you just had?

SUE: It drives me crazy because I see it—this only doing good. I see it as an opportunity to prevent some pain in the future. And it is so helpful. And I just—it just bothers me so much that anyone would misrepresent something that is so positive and so good. It's really—it's a life panel. It's a life panel about how you want to live your life. It's certainly not a death panel.

HINOJOSA: Sue's husband Dick is a reporter and has been covering health care reform for the La Crosse Tribune, the local newspaper in town. He says his wife's illness gives him a unique perspective on the debate that has engrossed the country.

DICK: I wonder the people who are just opposed to everything. I wonder what they would be thinking if they were going through something like this.

HINOJOSA: And it's all happening for you in the middle of this national debate about health care reform?

DICK: Uh-huh. Yeah. Which gives me a—which gives me—an unusual perspective. I know was it feels like and I know these people talking about death panels and—and socialism and all of that, it's all fear.

HINOJOSA: Fear that the government could use end of life planning sessions to ration care and deny elderly and sick patients treatment in order to save money.
But Bud Hammes says the discussions aren't about money, they're about people making their own decisions about life and death.

BUD HAMMES: People don't want to die hooked up to machines, suffering from the technology that was supposed to help them. People are actually quite reasonable about their own care.

HINOJOSA: And people are going to say, well, it sounds then like you have doctors and nurses, et cetera, saying to people, well, you know, maybe you don't want to spend all that extra money on all that extra care and have all those extra tubes, et cetera. And you know that people are suddenly saying, oh my gosh, now they want to take me off of all of this excellent medical care that is possible.

BUD HAMMES: There are people who say, "Keep going." And as long as we know that that is truly what they want, then we should do that. So this isn't an issue about focusing on denying care or focusing on saving money. I would defend a system in which we know what the patient wants, even if that's for more treatment. The purpose is to help people make good choices for themselves that reflect their values and goals so we don't do too much and we don't do too little.

HINOJOSA: But it turns out administrators at Gundersen Lutheran say the Respecting Choices program is saving money. In La Crosse about 90 percent of patients have documented end of life plans when they die. Here Medicare spending on hospital care in the last two years of life is 17,000 dollars per person. Compare that to 39,000 in the city of McAllen, Texas. Why? Well at Gundersen Lutheran, many patients who go through the respecting choices program are choosing to spend less time in the hospital. CEO Jeff Thompson says that's great for patients but bad for the hospital's bottom line.

JEFF THOMPSON: In the current fee-for-service system that is a bad business model. But, remember, our business is to serve the well being of the community. We are a 501C3 not-for-profit. Our job is to improve the health of the community.

HINOJOSA: And sometimes to improve the health of the community, you need to go in to the community. This doctor is making a house call. Dr. Gerlyn Brasic is a Palliative Care Specialist. Many of the patients she sees have terminal illnesses, so she focuses on relieving pain and suffering rather than trying to cure the disease. Today she's driving out into the Wisconsin countryside to visit Hollie Coleman, a 77-year-old man suffering from terminal liver cancer, lung cancer, and a progressive heart disease.

DR. GERYLN BRASIC: Hollie and I have—had some discussions about his wishes. And so—I know that—he's coming to a point where he's wanting less aggressive care. And that's the situation where I find it very important to have those wishes documented and in the patient's home.

HINOJOSA: Dr. Brasic knows Hollie well. She treated his wife, Erna, who died of emphysema last year. Now she is managing Hollie's diseases and his day to day pain as it get worse.

HOLLIE COLEMAN: Yeah, I love Doctor Brasic and I don't care who knows it. And her husband will probably hear this.

HINOJOSA: Hollie was an army platoon sergeant in both the Korean and Vietnam wars and served five tours of duty. He believes his cancer is from exposure to the chemical weapon Agent Orange.

HOLLIE COLEMAN: When we were out there in—in the jungle, and they'd be spraying with—with Agent Orange, which—which will kill the jungle—it—it'd be drippin' off of trees just like it rained. And—it's very dangerous stuff, very dangerous stuff. And it—cause cancer. It'll cause it quick, too.

HINOJOSA: The purpose for this visit is to document Hollie's wishes in case he becomes ill at home and not in the hospital where his treatment decisions are already written up.

DR. GERLYN BRASIC: if you get sick here at home, and the—the ambulance gets called the question is would you want them to try to do CPR or shock your heart?

HOLLIE COLEMAN: No.

DR. GERLYN BRASIC: Or put in a breathing tube?

HOLLIE COLEMAN: No.

DR. GERLYN BRASIC: Okay. And so I can tell them on this form that you don't want those things.

HOLLIE COLEMAN: I don't want that. Because that—

DR. GERLYN BRASIC: Okay.

HOLLIE COLEMAN: To me, that's just suffering, you know?

DR. GERLYN BRASIC: Okay.

HOLLIE COLEMAN: And I don't—I don't want that.

DR. GERLYN BRASIC: So if you're already gone, we're gonna respect that and let you go.

HOLLIE COLEMAN: Yeah, yeah. You know, if I have no pulse, no heartbeat, I'm not breathing—I'm done.

HINOJOSA: Hollie goes on to explain that if he has little or no chance of recovering and having a good quality of life, then he wants no extraordinary efforts made to keep him alive.

HOLLIE COLEMAN: If you—if it cannot be cured, and you determine that it cannot be cured, and—and—the second opinion, it cannot be cured, then I say forget it. Lemme go. You know, I—I want my wishes carried out. This is—this is my life, my body. And—I wanna be able to make the decisions about it.

DR. GERLYN BRASIC: And I would tell you, Hollie, that, from my experience, the vast majority of people feel exactly like you do

HINOJOSA: Hollie has also explained his wishes to his daughter, Pam, who moved back to La Crosse to take care of her ailing parents two years ago. She loves her dad...and she worries about him.

PAM BENSON: My first greeting every morning is, "Good morning, Dad, have you taken your pills yet?" And there are times when I think he lies to me...

HOLLIE COLEMAN: She said, "Dad, I wanna tell you sumpin' you're not gonna like." And I said, "Well, what is it?" You know? "You didn't take your pills this morning. And I'm gonna tell Dr. Brasic you didn't take your pill. And she'll put you back in the hospital." "Well, I'll try to take 'em from now on."

HINOJOSA: Pam was initially surprised that her father was willing to confront his own death.

PAM BENSON: Dad never was gonna talk about dying, making plans for a will, making, you know, sure he's got enough insurance because he's invincible. He's not gonna die. He served in two wars. He was shot. He was—there was no way he was gonna die.

HINOJOSA: But when you actually just sit down and talk about it, Pam says, it doesn't seem so scary anymore. And, she says, it's comforting to know that when the time comes she'll be following her father's wishes.

PAM BENSON: I look at my dad and of course I don't want to lose him. But with the care that he's able to get through Gundersen, it takes the pressure off of me because I'm not, you know, the lone bobber out there grasping at straws trying to make decisions.

HINOJOSA: Bud Hammes believes so strongly in helping people like Pam and Hollie that he's made it his mission to train every resident in internal medicine at the hospital in end of life counseling. And now Hammes is taking his program around the world to Singapore and Australia and, with Nurse Briggs, to a suburb of Minneapolis...a hospital here wants help in starting a pilot program. But when hospitals find out that there is no Medicare reimbursement for the many hours doctors spend having these conversations—- Hammes says it's a hard sell.

BUD HAMMES: Doctors get paid for treatments, for interventions, for diagnoses. I think they should also get paid for conversations. Conversations that actually help people make better decisions about what's good for themselves.

HINOJOSA: Gundersen Lutheran has been an advocate for end of life care at the national level. They even lobbied congress for it, and last fall one of their hospital administrators testified on Capitol Hill in front of the Senate Special Committee on Aging. So Hammes was pleased when the provision to pay for these conversations was added into the House bill. But after the uproar over death panels, White House officials signaled they might drop it all together.

Do you think Americans are really prepared philosophically to go to where you want to take them?

BUD HAMMES: I don't know. I really don't. The kinds of changes that are being proposed are, I think, in many minds enormous. And we may have to take change at a slower pace.

HINOJOSA: It may take more time for the rest of the United States to embrace these conversations, but Sue Hessel believes that we need to be more out in the open about these issues...she is even writing about it on her blog.

SUE: I think writing about it, talking about it and reaching out to people and having them reach out to me has really helped me a lot.

HINOJOSA: So your perspective right now is you're gonna fight to live?

SUE: Oh yeah. Oh yeah.

HINOJOSA: Hard?

SUE: Oh yeah. I mean I—you know, I—throw the kitchen sink at me. I just—I—I wanna be here to see future grandchildren. I mean I wanna be around because life is too much fun not to be around.

HINOJOSA: And as for Hollie Coleman...he's realistic about his prognosis...so he's gonna live it up while he still can.

HOLLIE COLEMAN: I know that with my cancer I'm not going to live all that much longer. But I figure that while I'm alive, while I'm able to do it, while I'm in shape to do it. Well, I'm just have fun and that's why I bought this little car —to have fun.

PAM BENSON: When I see him driving up in his little sports car and—he's living his life knowing that there aren't going to be the overall surprises at the end. There's gonna be difficult times, we're not stupid. but when it gets to that point, we'll have a plan.

BRANCACCIO: Alright, so...we are thinking the best time to plan for the end of your life is while you are still living it. And one the main instruments of such planning is the living will. On our website you can find more information about living wills, how your state regulates them and some precautions to watch out for. Before you get your affairs in order, get the facts. PBS.org is the place to start.
And that's it for NOW. From New York, I'm David Brancaccio. We'll see you next week.

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