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With Eyes Open

Episode Two: Difficult Decisions

Air Date: September 11, 2000

Introduction to With Eyes Open

BILL MOYERS, HOST, ON OUR OWN TERMS: You’ve just met doctors, patients and families who’ve learned to do something most of us find profoundly difficult, talk openly about dying. Such honesty is critical if we’re to live out our last days according to our own light. But many people are baffled just trying to begin such a conversation. So in the next half-hour Ray Suarez hosts With Eyes Open, an opportunity to begin how to learn how to begin these crucial discussions.

Introduction to Difficult Decisions

RAY SUAREZ, HOST: Good evening. I'm Ray Suarez. It comes up again in poll after poll, people are afraid of dying in pain, hooked up to machines. But in order for people to live out their last days in peace, they need to talk with their doctors and loved ones in advance. These are conversations few families have. Everyday in hospitals across the country, families who've never discussed this possibility now face the most searing of choices: would my loved one want to live like this or are we simply dragging out death? Tonight you'll meet two families who've been confronted with these harsh choices. And you'll also meet a group of doctors and educators who were not involved in these cases but they will help us all understand how to think about our own wishes for end of life care. Let's start now with the Suen family. Their beloved, 76 year-old, uncle was in good health then suddenly he suffered a massive, debilitating stroke.

The Suen Family

DIANA SUEN: [to bedridden patient] C'mon, Suk-Suk, you gotta wake up. We’re waiting for you.

By the time he got to the hospital, he still reacted, he was still able to hold up two the fingers, when they asked him to, but then he fell into moaning, and then he fell into a coma and at that point, that was it.

LESLIE DUBBIN, ICU NURSE: He’s the perfect example of what patients who end up, they’re neither here nor there. They’re not brain-dead, but then again they’re not functional. He has no awareness at all and the likelihood of him ever regaining any functionality is nil.

RAY SUAREZ: The Suen family now must decide: do they send their uncle to a nursing home or stop all medical treatment and allow their uncle to die? Which is the path their uncle wanted? He never said.

DIANA SUEN: He’s our elder and we’re Chinese, you don’t talk about someone passing away. It’s just something you don’t do. It goes against all cultural mores as far as we're concerned.

CLAUDIA SUEN: Just to bring it up would have been disrespectful. We’re being put in the position of playing god. And we’re all hoping, I’m sure of this, that God would take over and say, here’s a heart attack, then we cannot be responsible for his termination.

RAY SUAREZ: Unable to decide, the Suen family, along with their father, discovers Medicare will cover 100 days in a nursing home. For now, a reprieve.

RON SUEN: I'm giving myself a hundred days and I’m waiting for a sign. I’ve been watching this 76 year old man who was in terrible shape go into the hospital with skin falling off and he was just in miserable shape. He’s gotten hydrated, he’s gotten fed. He’s gotten rested. He’s looked younger than he has in the many years that I’ve known him. I’ve been watching his body heal. So I’m going to state where he is a patient in the process of healing until a point in which I can determine that he is a person in the process of dying and we're just keeping him alive.

Panel Discussion

RAY SUAREZ: Let me start first with you, Diana, because so many articles and advice columns and TV reports say have the conversation but as we just saw, you took that possibility off the table from the start. Had you tried?

DIANA SUEN: Actually, we never talked about it. We'd get together with our uncle for family gatherings and in the middle of a family party or gathering you don't say what would you like us to do if something were to happen.

RAY SUAREZ: And this wasn’t the kind of thing that he talked about either, Ron?

RON SUEN: No, the possibility was always there in the back of our heads I believe. We saw him getting older and more frail but no, we'd never brought it up.

RAY SUAREZ: Dr. Steven Pantilat, you're an intensive care unit physician. Often, I'm going to guess, the first time you ever meet a family is in this really extreme situation. When someone is close to death. You're not meeting them in a normal situation. Yet you have to help them. It's tough.

STEVEN PANTILAT, M.D., UNIVERSITY CALIFORNIA SAN FRANCISCO: It's very challenging and more and more we're in situations in which we don't know the patient before hand and we don't know the family before hand, which makes communication all that much more important.

RAY SUAREZ: So you're the one who's asking questions to begin with rather than giving answers?

STEVEN PANTILAT: Yes, you really need to know who is that person in the bed that you're trying to help and what's important to that person, what are their values, what is their vision of what's a good quality of life and I can't know that unless I ask.

RAY SUAREZ: Dr. LaVera Crawley, you're a bio-ethicist. This is the kind of thing that you talk about and work with everyday. Should we know that in some groups, in some cultures, it's more likely that decision making is going to revert to the family because there is not that idea of personal autonomy and personal decision making about one's own future?

LAVERA CRAWLEY, M.D., STANFORD UNIVERSITY BIOETHICS CENTER: We should know in general about the communities we serve. I think that it's important to know that not every community adheres to American values of individualism, that every family is going to be different. And that certain cultures tend to use, instead of an individual as the unit, that it's the family is the one unit. And then we should ask the individual family, what are your values? Where are you in that continuum?

RAY SUAREZ: And in the meanwhile Ron and Diana, you're making decisions by the seat of your pants. You haven't had time to have this nice, friendly panel conversation before being faced with your uncle in intensive care.

DIANA SUEN: I think so many people think that when I go I'm going to go fast. I know that I hadn't thought about it, really, until then. I looked at it more in terms of, you get sick; you get well. If you don't get well, you die. And there was no time in there.

RAY SUAREZ: Kathy Glasmire, you're part of a coalition that helps people have these conversations. What should we know about how families are handling this now and where you'd like to see them get to?

KATHY GLASMIRE, ADVANCE CARE PLANNING HEALTH EDUCATOR: I think the ideal really is that we would like to make the talking about death and dying a much more natural conversation. So that it's not a matter of saying, in the middle of the family party, let's have this serious end of life discussion. What would you want, Dad, if something were to happen to you? And I think a couple ways that we can do that is just paying attention to what's happening in the world around us. The popular culture and media is full of stories that deal with this. Everything from a movie that might be out to the latest one-hour drama on some program like ER. They cover these kinds of issues. They're wonderful opportunities to raise that kind of conversation in your family. Did you watch that program last night? What did you think about the way this family handled that? The more that we become comfortable with it, the more our families become comfortable with it.

RAY SUAREZ: It seems no matter how hard we try to envision the future, these advanced conversations the panel's been talking about having don't always cover every situation. In our next family, Linda Bermann, a frail 75 year-old woman, has had a major heart operation. She's not recovering well and is in the intensive care unit tethered to machines on full life support. A producer with a home video camera followed one of Linda's daughters as she grappled with how far to go with medical intervention.

The Bermann Family

RAY SUAREZ: Before her surgery, Linda Bermann had been very clear about her wishes. She did not want to be kept alive if there was no hope. But what if there was some hope?

KAREN BERMANN: I wish that when they had said to us, recovery can be very difficult, we had said, well exactly what does a difficult recovery consist of? In the worst case scenario, what do you mean by a difficult recovery? Because in our worst case scenario, we didn't picture this.

RAY SUAREZ: Karen worries that by going along with the doctors and agreeing to full life support, she is violating her mother's wishes. But the doctors see something different: a patient, very much alive, receiving the full benefit of modern medicine.

OSCAR SCHERER, M.D., CRITICAL CARE SPECIALIST: She can still survive this and there's nothing that says she can't.

KAREN BERMANN: When I'm in a death frame of mind, she looks like a person who is dying. When I'm in a more optimistic frame of mind, like I am today, she looks like a person who is, in the doctor's language, very, very sick.

LOUIS WU, M.D., FAMILY PHYSICIAN: The conflict that you're feeling right now is that the facts say one thing and your gut is telling you something else and that's always tough.

KAREN BERMANN: Now we're in the bowels of western medicine.

LOUIS WU: I'd say if she started waking up and she started talking to you, you'd change your whole attitude about all of this.

Panel Discussion

RAY SUAREZ: And Karen Bermann is with us now. You had done part of what we'd been saying all along is a good idea to do. What happened?

KAREN BERMANN: We thought we had done everything. It wasn't just part of it. My mother introduced me to the concept of a living will. So it was not only formally, in terms of filling out all the advance directives, but also in talking with us very openly about how she felt about death and letting us know prior to the surgery she went in for, that she was resolved about the possibility of death.

RAY SUAREZ: So there she is, post-op. You've got the documents. What happened?

KAREN BERMANN: If you go back and read the living will. We read it over and over, and the living will clearly said that unless she was in extreme pain, which she didn't appear to be or had no hope of recovery. And the doctor said to us, your mother didn't want life support if she had a terminal diagnosis and she does not have a terminal diagnosis.

RAY SUAREZ: But our ethicist is coming to the rescue, riding over the hill. Dr. Crawley?

LAVERA CRAWLEY: You can't ever second guess a decision that's made in a situation like that, particularly if you're wanting to compare it to a decision that was made under completely different circumstances, when you can be rational.

RAY SUAREZ: But aren't these documents meant to do exactly that? In our rational peaceful moments, protect ourselves from our future irrational and emotional decision making?

LAVERA CRAWLEY: I think that's one of the illusions of these documents: that they will cover everything.

RAY SUAREZ: Kathy Glasmire.

KATHY GLASMIRE: I'm thinking too that the fallacy of the document is okay, we filled it out and it's all done and we're all set is that of course if they do. Even for people who think that through, they do tend to focus on a procedure or a treatment, rather than on what's the goal at the other side of the treatment. It sounds like you had a very clear understanding of what your mother's wishes were in this case. Is my mother going to come home to me in the relatively same state as she left? If that's the case we'll do about anything to bring her to that. But what's the other side look like, and that's what those documents don't address.

RAY SUAREZ: Dr. Pantilat, we spent the beginning of this program bemoaning those families that don't have those conversations and advising them to do certain things so they be ready. The Bermanns were ready and then found out they weren't ready.

STEVEN PANTILAT: Right. This is a very common scenario, that we see people who have had conversations like this and they can't hit all the eventualities. Nobody can anticipate exactly what's going to happen. And yet there is a real important role still for these conversations but focused really on, again what's important to me. What quality of life would be acceptable to me?

RAY SUAREZ: I'm wondering if, part of our problem isn't, that our society hasn't caught up with our machines yet. We usually think of life and death as a fairly binary thing. You're either dead or you're alive. And now we've got situations where you're 35% alive and 65% dead or 62% alive and 38% dead and the ethics...

KAREN BERMANN: And you also don't know which direction, you don't know if you're moving towards, is he healing or is he dying and we were in that situation as well. We didn't know really in which direction, in which direction things are moving.

RAY SUAREZ: I can understand why one of your uncle's family said, oh, a heart attack might get us off the hook on this one. He's there in intensive care. It won't be our call.

DIANA SUEN: One thing that was hard, it's like my brother was saying, as he was cared for in the hospital they did a very good job of caring for him physically. So we actually did see him appear to physically get a little healthier, skin tone and things like this. But then at the same time, I wanted to know, okay, if his body lives, where is his mind, where is his brain, where is the damage? On one hand he's looking good, on the other hand if he can't function then what have we got? So to me that was still a loss of my uncle.

RAY SUAREZ: At that juncture, let's return to the ICU. What final decisions did these two families make?

The Suen and Bermann Family's Difficult Decisions

RAY SUAREZ: Linda Bermann has been in the ICU nearly two weeks and has shown only the smallest improvements. Her daughter still wrestles with honoring her wishes.

KAREN BERMANN: We've been searching wildly for information like this or that or the other piece of information is either going to save us. It's either going to save her or it's gonna sink her. And there's some piece of information we can hold on to. I think we've squeezed out all the information we can get that's really relevant.

RAY SUAREZ: On day sixteen in the ICU, the doctors tell Karen her mother still faces weeks in the hospital and months of rehabilitation.

KAREN BERMANN: She's not moving her body. I pick up her hand and she does not have the strength to move her hand: that's the kind of rehabilitation we're talking about. Does not have the strength to move her hand. My mother was a dancer, I don't think at 75, she wants to have to start learning how to use her hand again.

RAY SUAREZ: On day seventeen, a decision.

KAREN BERMANN: We did our best and now we have reached a point where we know that to continue to struggle against her death is in a clear violation of her view of life and death.

RAY SUAREZ: Although the doctors still wish to keep going, Karen and her family withdraw medical treatment. Linda Bermann dies in a few hours.

RAYMOND SUEN: They have done their very best here.

RAY SUAREZ: Mr. Suen has been in nursing home care nearly 100 days. His family visits often. But there's been no miraculous recovery.

RAYMOND SUEN: At nighttime, daytime, any minute, some call might come, something going to happen to my brother. Every time there's a phone call, you jump. So it's been a long grind.

DIANA SUEN: It's like, every physical part of him is falling apart. Then, we are playing God, and I can't go along with that too far.

RON SUEN: I stood in the room, I had to stop and look inside and say, how much longer can I let this go on? I was ready at that point.

RAY SUAREZ: The family decides to withdraw all medical treatment. Mr. Suen dies in a few days.

Panel Discussion

RAY SUAREZ: Ron and Diana Suen, there was that three months of breathing space, time to think. Did it make it harder or easier?

DIANA SUEN: I had felt actually earlier probably than the others that he had left us. I felt that he was physically there but there was something that I just couldn't feel there any more.

RON SUEN: I felt the need to push to the full hundred days and I came to my conclusion just shortly before that. And then I remember standing there in front of him saying I'm really sorry but I don't think you'd want to live like this and at that point, that's when I called my father up and said it's time.

RAY SUAREZ: Karen Bermann, was there an evolution in your case that you can even now explain? That you can see certain points that you reached?

KAREN BERMANN: Yes and no. For one thing there was a kind of a flip flopping between being hopeful and pessimistic, hopeful and pessimistic. What really made the break through was when we started to have images, pictures and stories of what it was going to be like for her after. There was that point at which they explained that rehab meant that she was going to have to learn how to go to the toilet again. Rehab meant she was going to have to learn to brush her teeth again. Once I started to have those concrete images of what it meant, then I could say no, she doesn't want that.

RAY SUAREZ: Doctor, I guess you don't do families any favor if you pull punches but one of the most common post ICU family complaints is how harsh doctors can be when they describe these very conditions. How do you walk that fine line?

STEVEN PANTILAT: Obviously it's very important to be honest about what the recovery is going to look like because people will make different decisions based on what they know. We're the ones who have experience there and we need to provide that information in as real terms as possible without white washing it and without making it seem overly grim. These are decisions that unfold over many conversations, many days, maybe many weeks.

KAREN BERMANN: I want to say that we took my mother off life support against the wishes of the doctors. It was the only reason we were hanging on to this notion of recovery was not because of our own inability to let go, but it was because the doctors were really relentlessly telling us that she was not dying. We really were saying to the doctors, listen, it's okay. She's 75, and she's come to the end of her life. Death is not a medical emergency. Can't you get on board with us?

RAY SUAREZ: Doctor, maybe some advice for members of your own profession?

STEVEN PANTILAT: There certainly is a bias toward wanting to save lives and that's a good bias. We should be trying to do that. But we're also trying to recognize more and more that we have another role, which is to recognize that at some point all of us will die. The challenge is to know when what we need to help with is helping someone achieve the kind of death they wanted and to know when our role really is to help let go.

RAY SUAREZ: After the decision was made to withdraw care and your mother, your uncle died, did you have to keep yourself from looking back over that decision? Was there any guilt?

DIANA SUEN: I can't say that I did. I felt that the time had passed and if there was any guilt I think it was more that maybe we let it go too long but I think it was okay. Like I said, I felt that the time was for the family.

RAY SUAREZ: Karen?

KAREN BERMANN: For a while I felt what I thought of then as guilt, which was the constant turning over and over was it was the right thing, was it the right thing? But looking back on it, I think it was just a matter of being overwhelmed by the responsibility.

STEVEN PANTILAT: I think that's why these conversations are so helpful, because they can in many ways relieve that burden. Because it is a big burden to take on, to be asked to make a decision for someone else, truly a life and death decision. I often will ask families if your father or mother could sit up now and talk to us, what would she tell us about what's happening to her? What would she say to us? Often hearing that person's voice makes it very obvious and helps to relieve some of that burden.

KAREN BERMANN: Something that was helpful for us and may be helpful for others is we did arrive at a kind of criteria or image. As I said earlier, which is that we had to know that our mother would be able to pull her shopping cart to the grocery store in six months. That was what we held onto. Was she going to be pulling the shopping cart to the grocery store or not?

LAVERA CRAWLEY: I'd like to actually come back to this quality of life, which we just about got to earlier. When you're on the physician's side of it or the medical side of it, you're wanting to define quality by things that are functional and medical. But when you look across the spectrum of American society, cultural differences will say that quality is not always going to be measured by function. So being in a vegetative state will still have quality for some people, because the family, the loved one is still there.

RAY SUAREZ: I want to get some final thoughts from members of the panel. But, but especially Kathy from you. Because we've heard how the medical directives can sometimes not fulfil their families wishes for them. So maybe some advice on what people can do to make sure that this is a useful exercise for them.

KATHY GLASMIRE: I think that basically, what we really are trying to focus on, is not so much the document as the conversations that need to accompany it. Again we're looking for ways to encourage conversations, in faith communities, in senior centers, in community organizations, in families. And we've developed some materials to help do that. So that when people find themselves in the situations that we've heard today, that they hopefully are not overburdened by the guilt, the huge decision that lies before them, but says, we've had these conversations over the past ten years. We are comfortable with this decision and we can be advocates for our loved one in this setting.

RAY SUAREZ: Ron and Diana Suen, what do you know now that might help others who are about to start this same process?

DIANA SUEN: I'll give that one to you.

RON SUEN: I know that to voice these issues ahead of time is very important, as I think we hear now. I myself will be creating an advance directive with some room for the family to be involved in the process.

RAY SUAREZ: Karen?

KAREN BERMANN: I want to say that you asked about guilt before and I want to say that the sensation of guilt or whether you call it the terrible burden of responsibility that we've experienced, I think it's part of the territory. And I wouldn't undo it for the world. I would do it again a hundred times. The fact that we had the advance directives and the conversations and everything appeared to be in place, the fact that it didn't keep us from a struggle, it was still a hundred times better than it would have been had we not had those things.

RAY SUAREZ: Thanks Karen and thanks to the rest of the panel for your insights and your guidance. We've learned tonight how critically important these advance conversations can be. I'm Ray Suarez. Thanks for watching and good night.

 

To learn more about starting a family conversation, living wills, and the laws in your state, call the Partnership for Caring, 1-800-989-9455.

Major funding is provided by The James Irvine Foundation with additional support from the Wallace Alexander Gerbode Foundation.

©2000 KQED, Inc.


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