PBS OnlineThirteen
Transcript of the Program

TIM RUSSERT (on camera): Hello, I'm Tim Russert, and welcome to the Fred Friendly Seminars.

In hospitals, doctors' offices and medical schools, there is one word that is rarely, if ever, heard -- the word "death." Most Americans -- even doctors -- don't like to hear or think about it, as if not breathing the monster's name will prevent its next visit.

But avoidance has its costs; and today what we fear most is not so much death itself as the modern medical nightmare: a death alone, in pain, tethered to expensive machines that merely prolong dying.

Our experiences with the death of loved ones has made us all wonder: isn't there a better way to die? Is dying in American more impersonal, painful and expensive than it needs to be? Should physician-assisted suicide be an option? Has medical technology made us think of dying as a failure rather than a natural part of life?

Now let us join our distinguished panelists as they wrestle with these profoundly personal questions that all of us must face before we die.

(voice-over): "Before I Die: Medical Care and Personal Choices."

Our moderator is Harvard Law Professor Arthur Miller.

ARTHUR: Panelists, I want to welcome you to Centerville. Centerville is a medium size community somewhere in the center of the United States, and a good deal of the life of Centerville is centered around a book store called "The Browser's Bookstore."

And in the course of our conversation, we're going to meet a number of people who hang out at Browser's Bookstore. The first person we're going to meet doesn't happen to be in the bookstore today. It's Cathleen Johnson. Cathleen Johnson is married, two lovely young children, but today, she's in the hospital. As a matter of fact, Dr. Nuland, she's with you. What's happened is that Cathleen has a primary care physician, and some time ago, the physician ordered a biopsy. And the biopsy revealed that there was some cancer. And that required surgery, and you've now looked at all the pathology reports and-- they are not too positive.

Indeed, they show locally advanced breast cancer -- cancer in the axillary lymph nodes, and Anna, you're Cathleen. You knew there was some cancer, but you certainly didn't know it was this serious. Dr. Nuland, talk to Cathleen.

DR. SHERWIN NULAND: Cathleen, we've got to talk about the results of your biopsy. It hasn't turned out the way I had hoped it would turn out. There is serious disease in it. It is malignant. In other words, it is cancerous. There are many things that we can do for this particular kind of cancer and for the stage at which it's at. But we have to face the other side of it too. We have to face the other possibility. That our treatment will not be successful.

Now, the important thing to realize in that situation is that if our treatment isn't successful, it's not as though it will fail next week or next month. It will fail a year or two down the line.

ANNA QUINDLEN: Well, Doctor, I-- I love the way you doctors talk. You're-- You're saying the treatment might fail in a year or a year and a half? I mean, are you, basically, saying to me, "You've got advanced breast cancer Cathleen and you're probably gonna die?" Is-- Is that really what you're saying? If you divest it of all of the euphemisms that you guys like to use?

DR. SHERWIN NULAND: My guess is that if this cancer proves to be nowhere beyond the lymph nodes, there's a very good chance that not only will you not die in this very short period of time you're probably worried about. But that you will survive without any significant problems for some period of years. Those are the things we have to focus on.

ARTHUR: Karen Stanley, appraise Dr. Nuland's discussion with Cathleen.

KAREN STANLEY: I see a woman who is scared silly with good reason and a very kind physician who is trying, inasmuch as is possible, to say hard things in a kind way.

ARTHUR: Are doctors very good at this?

KAREN STANLEY: No. It's very painful to give hard news, I think it is. And sometimes-- in our efforts-- to remove ourselves from the painful situation, we blurt it out, and then leave the room. The physician could've come in and said, "You have metastatic breast cancer. There's not much I can do. I'll send the oncologist in and be gone."

ARTHUR: Will Gaylin, why would doctors not be all Charlton Hestons at this?

DR. WILL GAYLIN: The typical surgeon is not necessarily trained, not trained, but also not by inclination or temperament, the kind of guy who is gonna like to be a cuddly-up and get into emotions. Most guys aren't. Most men aren't.

A typical surgeon is still a man today. And as I say, of all the physicians, he does less of it. He's really seeing bodies for the most part. He's in and out quick. Big bucks are at stake here. You've gotta brain surgeon or a breast surgeon and he goes in, he does his thing and he's superb at it. And I don't know and with the economy of medicine going the way it is, you really want an HMO that's gonna spend time-- spend money for his time there and even if you did, so everything is in concert, in a sense, for this to be a bad scene, let alone the fact it's a failure. It just is failure, even though it isn't. Doctors don't like to see failures any more than anybody else does.

ARTHUR: Dr. Fegan, how do you react?

DR. CLAUDIA FEGAN: It's painful. Physicians who do it poorly are physicians who have not had to come to grip with their own mortality, who don't ha-- who are not comfortable with death and dying.

And they often will extricate themselves. They'll give a diagnosis and leave the room quickly. The important thing here is that most patients after you say the word cancer, don't hear anything else. And-- And to go on and talk about the other information which he gave, which was very good information, is gone. She won't remember that tomorrow.

DR. SHERWIN NULAND: Well, let me tell you something you haven't taken, perhaps, into consideration. I don't know this woman. We are about to begin a long journey together. The journey may end with her death. I know nothing about her spiritual values. I know very little about her family.

Even if she has a primary physician, the way we work in America, is that from here on in, I am responsible for this woman. So I have to create for her two things, optimism and the sense, which I think I didn't do very well, that I will be with her throughout the process, that--

ARTHUR: And you think it's appropriate that the primary care physician has sorta handed her off to you and you can deliver this news, even though you, yourself say you don't know her.

DR. SHERWIN NULAND: I don't know what's appropriate. This whole thing is so irrational. Cancer is irrational, the setting in which we treat it is irrational. It was pointed out a moment ago the mu-- the moment that word appears in the vocabulary of the two people talking, bingo, the rest of the conversation is shut off and it's been my experience that it's sometimes shut off just before that word. Remember what we're talking about. We are talking about the prime instinct of living, human things. To stay alive. And someone has just said, "You may not stay alive." And everything shuts off.

ARTHUR: Let me-- Let me move the clock a bit. --Cathleen has a radical mastectomy, radiation, chemotherapy. She comes out of it all beautifully. It's-- It's miraculous. For about a year. And then a reversal sets in. And, if anything, she's worse and she's going through chemotherapy again. Dr. Payne, now you-- you do this, but it's not working. You reach the point where you are confident, bad word, I suppose, it's not worth it. It's just not worth it. Tell her.

DR. RICHARD PAYNE: Cathleen, we've-- you've had several courses of chemotherapy. You are really not much better. You've-- been getting sick. You're not feeling well. We have objective evidence that-- the cancer really hasn't responded. I would recommend that-- you not have any further chemotherapy. And that, at this point, we really-- emphasize-- treating pain and other symptoms.

ARTHUR: Now, by nature, you are a fighter. Indeed, the whole family wears buttons and the buttons say, "Failure is not an option." Now, Art Caplan is your brother. You two have a conversation with Dr. Payne.

ART CAPLAN: You tell 'em, sis.

ANNA QUINDLEN: Well, Dr. Payne, this conversation reminds me of the conversation I had with Dr. Nuland when I first came out of surgery. What -- emphasizing other aspects, do you, basically, mean you're giving up on me?

DR. RICHARD PAYNE: No. At this point, the best possible treatment is not to-- persist with more chemotherapy, but really to-- to persist in-- in treating your symptoms.

ANNA QUINDLEN: Well, let me tell you what I want to persist in. I have a 14-year-old daughter. I wanna make sure I'm at her high school graduation. You tell me how I can do that.

DR. RICHARD PAYNE: It--unfortunately, --I'm not certain that I can guarantee that. --I would very much like to--, but-- your cancer hasn't really responded to the treatments that we've-- provided. There are other possible experimental treatments that-- could be tried.

ART CAPLAN: That's what we wanna hear about, Doc.

ANNA QUINDLEN: That's--

ART CAPLAN: What-- What are you talkin' about? I've read, actually, you know, in the supermarket, recently, about an experimental treatment, something having to do with lasers, I think it was.

DR. RICHARD PAYNE: The issue here is whether-- it is in your best interest to pursue these experimental treatments which are experimental because we don't know if they work.

ART CAPLAN: Of course it's in her best interest, if that's all she's got.

DR. RICHARD PAYNE: Because the treatments may make you sicker without really treating your cancer.

ART CAPLAN: Doctor, I-- I just have to tell you somethin' about my sister. For as long as we've been a family, she has been a fighter. She is not a person to give up. We wanna take this anyplace, anywhere.

ANNA QUINDLEN: Wait a minute. But what I think he's tryin' to tell me is I can be a real mother to my kids for a certain period of time, or I can be an invalid mother to my children for a longer period of time-

ART CAPLAN: Sis, don't even talk that way. Don't even talk that way.

ANNA QUINDLEN: If I take--. Well, that's what he-- that's what he's saying. Wait, wait, wait. Who's cancer is this anyhow? This is what the doctor is saying to me. And I've gotta make a decision whether I wanna really be there for them or be there in a haze.

ART CAPLAN: You-- You know what Mom and Pop said, though. We fight. We're a family of fighters.

DR. RICHARD PAYNE: And we will continue to fight. And we will continue to fight to give you the best possible-- life you can have--

ARTHUR: Doctor, is it her decision or your decision?

DR. RICHARD PAYNE: --It is her decision. --Hopefully, with me, informing her of-- her options and alternatives.

ARTHUR: Deep down inside, are you giving up on her?

DR. RICHARD PAYNE: No.

ARTHUR: You're sure?

DR. RICHARD PAYNE: In fact--

ARTHUR: She keeps asking you that.

DR. RICHARD PAYNE: No, I'm trying to--

ART CAPLAN: Sounds that way to me.

DR. RICHARD PAYNE: No, I'm--

ANNA QUINDLEN: Me too.

DR. RICHARD PAYNE: No, I'm trying to make an-- a-- have a discussion to inform you that--we have no effective treatments for your disease.

ARTHUR: How does somebody in Doctor Payne's position know what is best to say?

DR. IRA BYOCK: I think Dick was starting to do it very nicely, but you really have to stop giving information and listen to where the patients at, where this illness fits in their life at the present time. I have to say, sometimes-- the-- the wish to make people better and save their lives is so strong that we continue to persist with really futile life prolonging measures way beyond where any reasonable person would say to go.

ARTHUR: But I'll ask you what I asked our Cathleen. Isn't that her decision?

DR. IRA BYOCK: It absolutely is.

ARTHUR: Isn't it convenient for you to turn off and walk away?

DR. IRA BYOCK: No, it's convenient -- no, because it hurts to do that.

DR. CLAUDIA FEGAN: It's easier-- to offer --another choice or another treatment than to tell a patient that there is nothing new or reasonable to offer. I mean, there's always another treatment that can be offered. And the courage or the guts come when you say, "There really isn't anything-- more to offer." And most physicians are too afraid to do that.

DR. WILL GAYLIN: There are certain things that don't want to be heard. Cathleen didn't want to hear from Dr. Payne that it was at the end of the line for her and this treatment. Now I have to admit that he didn't want to say what really was going on. When he said "I didn't give up on Cathleen." I don't know what he's talking about. He gave up on his treatment. He may have meant "I didn't give up on her as a person, but even if he'd said it perfectly, and even if all of us were just perfect at saying things, you're talking about death. You're talking about the, the -- the ugly relative at the -- at the wedding. No one wants him there.

ARTHUR: Doctor, does there come a point where you've got to say to Cathleen, "Your managed care simply won't fund this any longer."

DR. RICHARD PAYNE: I hope not. I am hopefully continuing to advocate for your best possible care. And-- fighting the hassles of-- dealing with the managed care organizations to do that.

ANNA QUINDLEN: Well, doctor, the thing is, I-- I really wanna die in the hospital. I wanna insulate my family as much as possible, and I wanna make sure that my managed care organization will let me do that.

DR. RICHARD PAYNE: Unfortunately -- that may not be your ultimate decision. Although I will try to support that. But-- I-- and the bottom line here is that I don't have ultimate control of the place of -- of where you die..

DR. CLAUDIA FEGAN: Despite what he may want to offer her, the-- managed care organization will put limits, will ask, "Is there another environment --a less expensive environment, where this care can be provided?"

ARTHUR: Well, let's assume that the managed care organization actually has not withdrawn support. But, Doctor, it has a pilot program that it's-- it's testing and-- and our Cathleen may fit, is very simple if a patient in Cathleen's condition, is willing to forego all aggressive treatment, which, at this point looks fairly hopeless.

The managed care organization will make a sizeable lump sum payment to the patient. And you know she is worried about the kids and their college education. Do you tell her about this?

DR. RICHARD PAYNE: I'd probably tell her, because I'd like to think I'm honest. --But I'm very uncomfortable telling her.

ARTHUR: Why?

DR. RICHARD PAYNE: --Because we've now introduced-- in a very --a-- a real way, a whole financial-- issue, which-- I hope won't cloud my and your best medical decision.

ARTHUR: Do you-- think there's something ethically wrong with this offer?

ART CAPLAN: Well, "ethically wrong" might be a-- somewhat weak description. Encouraging them to swap couple final days of life, maybe for the big reward. --It's all right, --maybe in Atlantic City. Doesn't seem to be so hot as an offer for a coerced, dying person at Centerville.

No patient should be asked by anybody to swap the final days of their life to win a monetary prize by the company that's supposed to be, with its folded hands, big rocks, Snoopy, lookin' out for her interest.

ARTHUR: Don't you think if this is America --

DR. JOANNE LYNN: It's much harder than that. It's much more difficult. We do this all the time, as a country. This is exactly the deal we put in front of people who face impoverishment with serious, chronic illness, in Medicare and Medicaid. You can choose a course of care which will see to it that you do not live a long time, and thereby leave your spouse with something to live on. Or you can spend down to impoverishment and eke out the last. And, oh, we'll all support that. We'll pay all the bills. But, incidentally, you will be left with the spouse having the house, the car, and $3,000. And, you know, to think that that is a different deal than she's being proposed is somehow to sanitize our public behavior.

ARTHUR: You hear about this. You're a patient. What's your reaction?

ANNA QUINDLEN: I want the money. I want the money. I have two children. I have two--

ARTHUR: There's a genetic problem in this family.

ANNA QUINDLEN: I have two children who have to go to college someday. I have already realized, slowly but surely, that I am not only not gonna be there when they go to college, I am not gonna be there when they go to high school. I am tired of any kind of treatment, much less aggressive treatment.

ART CAPLAN: Sis, don't give up.

ANNA QUINDLEN: There are two words I have gotten so tired of hearing throughout this entire process, from my doctors, from my rabbi, from my minister, from my friends. And now from you. I understand. None of you understand. None of you understand what it's like to be me now, and don't say it. And you don't understand. And I need this money for my kids. And I'm gonna take this money for my kids. I'm at the end of my rope.

ARTHUR: Nancy? Problem here or not?

NANCY DUBLER: Patients have the right to die according to the rules that they've set for themselves. It's so hard for our system to stop making moral judgments about the behaviors of patients when they're dying. We're supposed to die without losing our ability to meet everyone else's expectations.

But the patient is facing her own death, and she wants to do it in a way that comports with her values. And her values as a Mom are, that she worries about her children first. So for the most exalted of reasons, which is we don't like managed care companies and what they're doing and they're bad, they're evil, we'll take away her ability to choose.

One more time, when she will be assaulted by our values. Not permitted to act according to her own.

ARTHUR: Finally, Cathleen and the family acknowledge that she's going to die. And the only thing the family says is for heaven's sake, you've got to alleviate pain and suffering at this point.

Now, one night, when the basic doctors and the basic nurses are off, Cathleen's pain increases and increases and increases. And the night nurse says, "We have to give her more dosage." The only one else present is a resident.

He's just out of medical school. He's never seen Cathleen before. He looks at the charts, and is horrified at the amount of the dosage that's been given, let alone the prospect of giving more. Now, I'm gonna ask you to role play, Dr. Payne. You're that resident. The experienced night nurse is saying, "Up that dosage."

DR. RICHARD PAYNE: Well, every text book I read never told me to give a dose this high. And she may be dying, but I don't wanna kill her tonight. So--

ARTHUR: Why not?

DR. RICHARD PAYNE: I don't know her. I'm the covering resident.

KAREN STANLEY: I know. I do.

DR. RICHARD PAYNE: I don't know her and you're asking me to write the order.

KAREN STANLEY: I absolutely am. And I'm gonna keep asking you until we can get this solved. What I'm asking you is nothing. This is almost a spit in the ocean. But we ha-- listen -- listen up here. We have an ethical obligation to rele-- listen. Please look at me. I've been here.

DR. RICHARD PAYNE: Yes ma'am.

KAREN STANLEY: We have an ethical obligation to relieve her pain. If you feel that you can't help me with this, then you need to direct me to someone who can. Because we have to get her this medication. We cannot-- I am telling you, we cannot let her lay here and suffer like this. Would you want this for yourself?

DR. RICHARD PAYNE: No, I wouldn't. But I don't wanna-- I don't know her, and I don't want to be the person--

KAREN STANLEY: I know her.

DR. RICHARD PAYNE: -- to cause her death tonight.

ARTHUR: What are you worried about? That you'll be sued if you give her the dose and she dies?

DR. RICHARD PAYNE: Yes.

ARTHUR: So you're gutless.

KAREN STANLEY: That sums it up.

ART CAPLAN He's inexperienced.

DR. RICHARD PAYNE: That's one way to put it.

ARTHUR: Are you worried about your license?

DR. RICHARD PAYNE: Yes, I'm very worried about my license. Because I-- I think that there's this medical board, and there are these bureaucrats in my state capital who are looking at how I prescribe these medications. And-- if I'm reckless in my prescription of these medications, so they say, I might lose my license.

ARTHUR: What do you think? Are these apprehensions real?

DR. JOANNE LYNN: Well, he's-- he's terribly misinformed. Poorly educated. He luckily has run up against a nurse who's got some spine and some knowledge. And probably, she's going to see to it that someone up the chain of command overrules him, if he doesn't-- learn a lot real quick.

If he can stand there next to-- or sit next to a patient who is writhing in pain and moaning, and walk out and do nothing, he-- he deserves to lose his license, among other things.

This oughta' count the same as an obstetric emergency. It oughta' count the same as a patient bleeding out in the OR. I mean, just-- this is a terrible emergency. It ought to be treated as an emergency. And the institution has to be supportive of that.

DR. IRA BYOCK: But if she dies on his watch, he's gonna have to explain this. It's the nightmare of-- of a resident, to end up with the professors-- scrutinizing what you did in the middle of the night.

ARTHUR: Is he simply unique? The world's most insensitive--

DR. CLAUDIA FEGAN: All physicians, regardless of their experience, are afraid of making a mistake. And the problem is with his let-- you know, his-- where he is in his training, he has more to fear.

ARTHUR: While this debate is going on, Cathleen's been in pain, but suddenly, her heart stops. And our resident does exactly what he has been trained to do. He goes directly to her bed and brings her back from death.

DR. RICHARD PAYNE: Yes sir.

ARTHUR: You have saved her life.

FEMALE VOICE: Ugh, oh yes.

ARTHUR: Of course-- you did not notice that on her chart at the nurse's station, it said "do not resuscitate."

ART CAPLAN: I think the only reason he got her resuscitated was that I was up in the bathroom or someplace. If she has no family and no one to protect her, and no one to squeak the wheel for her, then she's in trouble.

NANCY DUBLER: But listen to what we've all just done. We've said, unless there's a courageous nurse, unless you've got a brother there--

NANCY DUBLER: Unless you've got someone to advocate for you in the system, you're gonna have a lousy, painful death.

DR. JOANNE LYNN: The fear isn't that of-- of having a wrong headed resuscitation at the end. It's all the stuff that went before. The risk of not having elegant pain management, or not being cared for with elegance and grace, or not having a meaningful experience, I mean who's talked to her about videotaping what she wants to say to her daughter at graduation? Who's talked to her about where she wants to be buried, and what she wants to be said at the funeral? How she wants the funeral to run. How she wants her children to remember her. Does she have a chance to write letters? Those things are what we utterly are blind about.

ARTHUR: This is what happens. She's been resuscitated, perhaps improperly. Unfortunately, in the two or three hours before her death, she was in terrible pain. Now brother, how do you react to that? Your sister is now dead.

ART CAPLAN: I gotta sit down. I knew this was gonna come, but-- I gotta think about this for a minute. And having thought about it for a minute, I'm gonna get these creeps. I've never trusted them from day one. I don't believe that they did everything they could have for my sister.

ARTHUR: Anna, if you could speak to us from whatever cloud you are currently inhabiting about the way you died, what would you say?

ANNA QUINDLEN: That I don't know from beginning to end whether it could have been any better. I don't know whether anything that any of you said to me could have made any difference, really, once I heard those first words and knew intuitively what I knew by the looks on your faces and-- and the euphemisms you used.

And that I don't know whether it's possible to be dignified, when your body is breaking down on you. And I don't know whether it's possible to manage the pain in the way you want.

Maybe we fool ourselves that there-- somewhere out there in the ether, there's a way to do it to make it right, when in fact, there isn't one.

ARTHUR: Dr. Byock, le-- look at this. She dies alone, in excruciating pain, getting treatment she doesn't want and doesn't need. Are Americans dying that way?

DR. IRA BYOCK: Unfortunately, I think they are. Too many of them are. It's an absolute national tragedy. It's a national crisis. It's a national shame. We-- should heed this as a call to action, to-- to make it different.

ARTHUR: So much of this discussion, because of the age in which we live, was Cathleen seeking technology and medicine as a way of easing this process. Have we lost spirituality, Reverend?

REVEREND RODRIGUEZ: In the process we have lost it. It may give a lot of answers that will prevent all this pain and extended suffering that goes along the family. I think that in this particular case the dynamics of spirituality and healing are the miracle that we lost in the conversation. It has to deal with her-- her own sense of living. The way you live at the end will say something about the way you die.

ARTHUR: Rabbi?

RABBI LAMM: We are lacking the spirituality which teaches us not pain control but suffering control.

REV. RODRIGUEZ: Amen.

RABBI LAMM: I think we have gone a long way to pain control. We haven't budged on suffering control. Part of the suffering control has been done by hospice, the only institution that has done it.

And in hospice we can get people who talk about oral histories, about giving back power, about learning the meaning of life, about connecting with God. If you can recognize that your pain is part of a larger picture, that there is a meaning to suffering, then dying would not be quite the horrific moment that it is.

ARTHUR: Joanne, you were at Centerville General that night, and you have vowed that this really shouldn't happen. That your patients should plan all of these issues regarding death. Now, you've got a new patient today. His name is Alan Russo.

Alan Russo and his wife were frequently seen at Browser's Bookstore. They were always in the travel section. Alan is 65 and she's 61. They've just come back from their second honeymoon. They went to the Galapagos and they rode giant turtles and they're fit as a fiddle.

He's in your office and you have spread all sorts of pamphlets out about advanced directives. What do you say to Alan?

DR. JOANNE LYNN: What I really want to know from Alan is whether there- whether I am correct in-- in my assumption that if he were ever too sick to speak for himself that I should rely on his wife. And then I want him to give me a little bit of advice at that point about what kinds of things he thinks about as he faces growing old. But let him get a few things on the table. And then just say, you know, "as you get older I'm going to keep bringing this up, each time we see one another.

ARTHUR: You're Alan Russo and you're sitting there. And here's this pamphlet on advanced directives. Do you read it?

ART CAPLAN: Nah. Got any travel brochures?

ARTHUR: Why don't you read it?

ART CAPLAN: It's got nothing to do with me. I'm interested in living my life. I'm not interested in talking about death. I'm vigorous. I like to travel. I've got things to do. Give me it when I need it.

ARTHUR: Well, there's nothing else to read there.

ART CAPLAN: Oh--

ARTHUR: You start-- what's in there?

ART CAPLAN: All right, I'll browse it.

ARTHUR: Do you understand it?

ART CAPLAN: Well--

ARTHUR: Are you trying to understand it?

ART CAPLAN: I've heard about it, but I'm-- I'm not worried. My wife is here, my relatives are here. They'll take care of it.

ARTHUR: Claudia, what do you do with him?

DR. CLAUDIA FEGAN: We all die at some point in our lives, and we should have a say about it when we're well and it's not a threat and that we can have some thoughts about how we would like that to happen.

ARTHUR: Have you ever looked at that thing?

DR. CLAUDIA FEGAN: We have it-- yes.

ARTHUR: I mean, it's filled with all sorts of stuff. CPR-

DR. CLAUDIA FEGAN: You know, it--

ARTHUR: Ventilators.

DR. CLAUDIA FEGAN: No, there-

ARTHUR: Hydration, nutrition.

DR. CLAUDIA FEGAN: The very--

ARTHUR: Terminal. I mean--

DR. CLAUDIA FEGAN: The easiest thing to do--

ARTHUR: Must have been written by a lawyer.

DR. CLAUDIA FEGAN: For sure. For sure, they're in charge.

ARTHUR: You're very persuasive. You wear him out. Over time you wear him out. And what he tells you is "look, I never want to get on those damn machines with all those tubes." And eventually you get him to sign an advanced directive.

Now, for six years, the Russos continue like two kids, traveling the world, having a wonderful time. Then one autumn morning when Alan is out back chopping wood, after which he puts on his roller blades and off he goes. He has a terrible stroke. And they bring him in to Centerville General, they immediately put him on life-support, and, indeed, looking at his face he-- he does this with a very grateful expression. What good's the advanced directive?

DR. CLAUDIA FEGAN: Well, I mean, anyone who's short of breath or can't breathe is relieved when they finally get oxygen. Not being able to breathe is the most agonizing--

ARTHUR: And-- and--

DR. CLAUDIA FEGAN: --experience that someone can have.

ARTHUR: And if, at the moment of putting the device in, he says "help, help, help."

DR. CLAUDIA FEGAN: There are all kinds of ways to give help. You could medicate him in a way that his not being able to breathe will not be as uncomfortable.

ARTHUR: "Help, help, help, help. Not ready."

He told his wife and-- one-- at least one of his children "I never want to be on those machines." That's what he told his wife.

DR. JOANNE LYNN: 100 percent of people say "Oh no, I didn't mean that. I only meant if I was going to live on it for all the rest of my days, if I was going to be in terrible condition, if I was dying anyway." I say "Oh, so now we're more clear. You don't want to have this just dragged out on machinery."

ARTHUR: So this is very Talmudic, huh?

DR. JOANNE LYNN: Ah, very--

ARTHUR: You have to look at the footnotes.

DR. JOANNE LYNN: --much so. Very much so. Yep.

ARTHUR: And the interpretations. What does a lawyer say about-- about these documents?

NANCY DUBLER: Unfortunately many of the documents that people sign don't mean what they think they mean, and they don't reflect what patient wants. The patient means "if I'm not able to recognize family and loved ones, I'm not able to make decisions, and not able to get better."

But unfortunately documents come in to hospitals at all times of the day, and most often at night, that have these absolute statements and present tremendous problems for physicians, and even more so for hospital administrators. And a confused hospital administrator is a dangerous person.

ARTHUR: He is still functioning. He can communicate. And he appoints his daughter Antonia as his medical surrogate. That's you.

As of this morning he's lost the ability to communicate. He's totally unresponsive. You think dad really would not want to be on this machine, that this is what he meant clearly when he said six years ago "I don't want to be on machines."

You are another daughter, Kathy. You are four-months pregnant. Your position is that when you walk into his hospital room he seems to light up a little bit. And it's your conviction that dad definitely would want to see his first grandchild.

Will, you're a brother. You're not sure whether he's there or not. Your feeling is it isn't ethical to withdraw him from the machine. What do you say, Antonia? You have a document. The document makes you the surrogate. It is legal, binding, you've got the authority. What do you want to do?

ANNA QUINDLEN: Guys, if he said to me once he said to me 100 times "I don't want to be on those machines." I look at him on those machines, I know that this is what he was fearing all those years. Doctor, I want the respirator off. That's all there is to it.

KATHY SLAUGHTER: Now, wait a minute. I go in there and I talk to daddy, and I put his hand on my belly. And I see him, I see his face change. I know he's in there. You're killing him if you do that.

ANNA QUINDLEN: I--just--

KATHY SLAUGHTER: He'll get better.

ANNA QUINDLEN: Wait. Who's the person to decide, daddy or you?

KATHY SLAUGHTER: He's my dad, too.

ANNA QUINDLEN: Yeah, but, he made this decision for himself. He designated me, he told me so many times that he didn't want to be on the machines. Who are we to take the choice away from him when he can't speak at this moment.

DR. WILL GAYLIN: I've heard you girls squabble all your lives. And it's always about daddy did this and daddy did this and who's daddy's favorite one. Maybe Daddy didn't want to be on the machine, but he is now. Don't we have some religious conviction, some sense that while he's there -- to not put him on may have been correct, but should we really pull the plug? Can you live with that? Isn't that murder? Isn't that something that in a sense offends everything that daddy taught us? He taught us to go to church, to believe in God. This was God's will, I guess, to have him on the-- I just don't understand you girls. You really want to pull that plug?

KATHY SLAUGHTER: No.

ANNA QUINDLEN: This machine has nothing to do with God's will. This is the doctors will. When we take him off the machine then we'll find out what God's will is.

KATHY SLAUGHTER: Well, God gave the doctors the sense to invent the machines to put him on there. I know he's in there.

ARTHUR: Wait, wait.

KATHY SLAUGHTER: And I believe that daddy's getting better.

ARTHUR: Wait, I am still your mother. I am still your mother, and you may have the document daddy signed because daddy didn't want to burden me with that. I-- I-- I just don't know. I just-- I think we need a little help. Connie, is he there?

CONNIE HOLDEN: Well, I think the question to be asked is, is this how he's always going to be? Yes, there might be a little cognition there. But if he's going to be like this, unconscious for months and months and forever, is this how he would want to be? And would he want to be kept alive in this condition?

ARTHUR: Reverend. You've always talked to the family about spirituality. Does he still have it?

REV. RODRIGUEZ: While he's breathing?

ARTHUR: Yes.

REV. RODRIGUEZ: He still have it.

ARTHUR: What's a mother to do, Rabbi?

RABBI LAMM: I think morally we are not permitted to pull the plug. The man has life, the man may come out of his coma, as so many do. And who are we to act God?

ARTHUR: Are we back--

RABBI LAMM: I think you can withold it.

ARTHUR: Are we back in the miracle business?

RABBI LAMM: No, not a miracle business. But people do come out of comas.

ARTHUR: What do you want to do?

ANNA QUINDLEN: Somebody asked me if my father's breathing. My father isn't breathing. A machine is breathing. A machine is inflating and deflating his lungs. You could-- you could do this to a person probably an hour or two after they were dead. This is exactly what he feared, living in this condition. I-- I want-- I want this machine stopped. He's being tortured.

DR. WILL GAYLIN: You know, you've convinced me. I think you're right. I don't think it's God that's keeping him alive. I think it's modern technology, the machinery. You're right.

KATHY SLAUGHTER: His heart is beating. He is still there. He responds to me. Maybe he didn't like you, maybe that's why he doesn't respond to you. He responds to me. He knows I need him. And I need him and I want him here.

ARTHUR: Dr. Byock --

KATHY SLAUGHTER: And you're killing him.

ARTHUR: Let's assume that Toni -- despite the dissents from within the family she has the legal authority, and she says "here's my surrogacy. I want you to unplug my father right now."

DR. IRA BYOCK: My answer is I-- I will support your surrogacy and do what you ask for, but not this moment. ARTHUR: Here's the piece of paper. Unplug him.

DR. IRA BYOCK: I'm not a mechanic here, I'm a physician. And I-- and my focus is not only on the-- the-- the heart and the lungs and-- and these-- the dials on these machines, it's in acknowledging the human experience that's taking place here. This is a critical experience for your family. Probably the most important thing that's ever happened in your family since your birth and your brother and sister's birth. I have to have a sense that all peoples' values and their stake in this -- because they have a stake in this, too -- are being heard here.

ARTHUR: Let's suppose a doctor agrees to do it. You think that's a decision that should come up to the ethics committee or hospital council?

NANCY DUBLER: No, I don't think this should go to the ethics committee. I think that the doctor should respond to this spokesperson for the patient, and should set a plan. Maybe not this moment, but in 48 hours I will make one more attempt to talk with your family, because I don't want them to suffer, but then I will do it. Because in fact it's what your father wanted and you're his representative. And, yes, I will plan to do that. Give me 48 hours to work it out.

ARTHUR: Well, fortunately, in the midst of the 48 hours, Kathy has an unbelievably vivid dream. And Dad comes to her in the dream and says, "I'd like to be released from my earthly body." That instantly brings uniformity and the machinery is withdrawn.

Let's now meet someone else from Browser's bookstore. It's Paul. Paul always used to be reading books on patients' rights. He has AIDS. You think he's got about six months to go. He says, "The only way I am going to have any sort of death with dignity is with assisted suicide."

DR. SHERWIN NULAND: First let me say that patients with AIDS who ask for assisted suicide are in a totally different category than any other patient that does because it turns out that in this particular disease, there is the highest frequency of people asking for assisted suicide. They have seen people die with AIDS dementia, which means they really have no idea of who they are or where they are for weeks or months before the die.

They have seen people die blind because of the so-called retinitis that effects the inner aspect of the eye. They have seen people die with infections and sores all over their bodies. They have seen people wasted into 70 pound wraiths. That's not the kind of thing that you can see without, when the diagnosis comes, thinking seriously of suicide.

ARTHUR: Ira, you've known me for some time. This is what I saw with my friend. Now, what do you have to offer me, as an alternative?

DR. IRA BYOCK: I can offer you the best that I have in my mind and my heart and a-- a team of people who-- care about you, not just as a person with the disease, but as a human being.

ARTHUR: Connie?

CONNIE HOLDEN: My sense, Paul, is that what you and some of the other people in your community have experienced is-- is death without the kind of support that you need. And that's the thing that we can offer you, is people to be with you, so that you're not alone.

And I think pain is a narrow part of the experience and suffering, -- It's physical, It's emotional, it's spiritual. It can even be financial. And hospice teams are prepared to look at all parts of the suffering, not just the physical.

ARTHUR: You know, I'm-- I'm very interested, very impressed by you. So, I'm not going to assume assisted suicide at this point. But, Doctor, I want to hold that back as an option. And I'd like your commitment that if the time comes when that option is the one I choose, you'll help me.

DR. IRA BYOCK: I'll do everything in my power to make certain that you are not in pain and not treated in an undignified fashion. The one thing that I won't do, is act with the intention of killing you. It's just not part of my job description, Paul. It's not part of what-- what I do.

ARTHUR: Doctor, it's not me, anymore. When it reaches that point, it's not me.

DR. IRA BYOCK: You're not who you are. You're absolutely right. But you know what? There are relationships there that still can grow in the midst of-- of this process.

ARTHUR: But isn't it my choice? Isn't it my choice?

ARTHUR: Connie, would you help me?

CONNIE HOLDEN: What I would help Paul do is find someone who was comfortable helping Paul. --In-- in all due respect to this doctor who can't, there are some physicians who can and I think it might be a great mental comfort to Paul to know that there would be somebody out there who would assist him, --if that's what he finally decides to do.

ARTHUR: Karen, would you help?

KAREN STANLEY: For a patient to ask that question of one of us, I think requires a phenomenal amount of courage. But walk with me through the situation for a minute, if you will. A friend and a colleague, has leukemia. I'm with her when the disease recurs. She says to me, "I'm gonna die, aren't I?" And I say, "Yes, I think so."

Ultimately, she chooses no further treatment because it's relatively futile anyway as this particular kind of leukemia goes. And an emergency arises. Significant amount of pain suddenly and one of the things that I have promised her is that I will never abandon her. It's very clear that this is-- close to the end of her life.

And I'm sitting in-- on the bed, holding her. And she says, very clearly, "Would you please give me a shot so I can just go to sleep. I don't have enough courage to do this any more." At that time-- I felt that I was the one who didn't have any courage. Here I was in the face of this-- what seemed, at the time, to be a very reasonable request. And I felt cowardly and ashamed.

And, you know, if-- if I were in that position, I mean I-- for myself, I would want a trusted friend there, that I could ask to help me and they would just do it.

DR. WILL GAYLIN: And that-- that's the real dilemma. That-- That-- on the one hand, we wanna protect the physician's role so that he not be a death dealer. On the other hand, for my wife, I would do it. For my daughter, I would do it. She had a friend. All of us sitting at this table, by dint of our profession or our sociology, have at least some hope that somehow or other, someone will do it, whether they will just give us the information or actually do the injection. That's the true doctor's dilemma or-- or medical dilemma of dying.

ART CAPLAN: You know your wife well enough. You know your sister well enough. You have the relationships and the bonds and the understanding. As an institutional policy? As a law? As a practice for the profession? I don't think the system is up to it. If I dare call it a system, this mishmash that we have with some people offered hospice and Paul being led down the road with options. And other people homeless, uninsured, dying in the street, IV drug abusers. Where's the conversation there?

ANNA QUINDLEN: But we put it under this entire rubric called "assisted suicide." There's a qualitative difference between filing something into someone's IV line that's gonna stop their heart in a matter of minutes, and writing someone like Paul a prescription, just writing them a prescription which they can fill if they want to. Over and over again, I hear that people find solace not in taking the pills from that prescription but in owning that prescription. Because this discussion about assisted suicide is not about wanting to die. Again, it's about wanting a sense of control, a sense that-- that somehow you get to make the decision and not you.

ARTHUR: We've had this conversation and it's revealed a lot of shortcomings in dying in this country. What is it that we have to do?

NANCY DUBLER: I think we have to make death acceptable. We have to tame it. We have to educate patients that doctors can sometimes cure and sometimes only comfort. We have to make hospitals acknowledge that patients come there for treatment and cure, and they come there for death. We have to set in place institutional supports, so that it doesn't take the extraordinary courage of one nurse or doctor to bring comfort to a patient.

RABBI LAMM: The way to ameliorate the sting of death is to be able to control the suffering by teaching people how to live with meaning and therefore, how to die with meaning. How to understand that death is not the ugly specter that we have painted it, that we're afraid of. And I think that Rabbis and priests and ministers have not done their job, virtually nobody speaks from a pulpit about dying and about death. And I think that now we have to do it.

ARTHUR: Dr. Payne, hospitals, doctors, medical schools.

DR. RICHARD PAYNE: Medical schools need to become more enlightened, and need to understand that people in fact die from medical illness. You read medical textbooks. It appears as if no one ever dies from a medical illness.

DR. IRA BYOCK: Dying is more than a set of medical problems to be solved. Dying is part of living and it's part of the life of every individual, every family, and every community. I would submit that the real solution to this problem is not medical, it's cultural. We have to reclaim the end of our life within a healthy vision of-- of human life that extends from birth through the dying process and even through beyond to bereavement.

ARTHUR: Before we leave Centerville, let's take a last look. Paul, although it's clear he will die, is working as best he can in Hospice. Will, as we're leaving Centerville, the last person you see is Paul. What do you say to Paul?

DR. WILL GAYLIN: Well, I guess I would not talk to him about death with dignity. I would not try to make logic out of this. I would not try to make sense out of it, in many ways, we are part of that culture that is trying to make sense out of everything.

Death is a sting. It may be a part of life, but it's the part of life most of us don't embrace. There will be pain at the end, we'll all try to share it with you if we can, but the idea of demystifying death. How can you demystify death? I mean, death is the ultimate mystery. We're the animal that's forced to suffer with the knowledge of our death. The only one. And if you're blessed-- with a kind of religious faith, which I'm not and Paul isn't either, we just have to hope that those relationships we formed, the things we'd done, the memories that are left, form a different kind of immortality that-- will go on beyond us.

ARTHUR: Anna, in your incarnation as Cathleen, you may be seeing Paul again. But what do you say to him as we leave Centerville?

ANNA QUINDLEN: In all of my incarnations, I would say the same thing to him. I would give him a copy of a prayer that I have. "God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference."

ARTHUR: Well, we have now reached the end of our journey. I want to thank each and every member of the panel for accompanying me on it. Thank you.

Home Page

PBS        THIRTEEN