Transcript

WRITTEN, PRODUCED & DIRECTED BY
Miri Navasky & Karen O'Connor

Nov. 23, 2010

ANNOUNCER: Tonight on FRONTLINE, an intimate journey to the edge of life.

JUDITH NELSON, M.D., Medical Intensive Care Unit: Nobody wants to die. And nobody wants to die badly.

ANNOUNCER: Into the heart of modern medicine.

DAVID MULLER, M.D., Dean of Medical Education, Mount Sinai: There's almost always something else that we can do to put off the inevitable.

ANNOUNCER: Where patients, families and doctors face the hardest decisions.

KEREN OSMAN, M.D., Bone Marrow Transplant Unit: If you're tired and you don't want us to do this anymore, that's OK with me.

ANNOUNCER: The moments of hope.

BARBARA MANN, M.D., Medical Intensive Care Unit: People surprise us all the time. Patients that we didn't think could breathe do breathe.

JEROME GROOPMAN, M.D., Professor of Medicine, Harvard University: Patients with severe illness will go with you to the edge.

ANNOUNCER: The will to fight.

ALBERT ALBERTI: We'll make it through this. Have to.

DEBORAH ALBERTI, Albert's Wife: Why give up? What's that going to do?

ANNOUNCER: And the courage to let go.

ADRIANA MALONE, M.D., Bone Marrow Transplant Unit: I think doing nothing is a very important consideration. It really depends on what you want.

ANNOUNCER: Tonight on FRONTLINE, Facing Death.

NARRATOR: In the Intensive Care Unit at Mount Sinai Hospital in New York City, a family gathers. Gendolina Lara-Morillo has been kept alive on a ventilator for the last five days.

SCOTT LORIN, M.D., Medical Intensive Care Unit: She's not doing well. She's dying. Very difficult. We know.

NARRATOR: With every major organ failing from end stage liver disease, her family is now faced with taking her off life support.

Dr. LORIN: We have a decision to make. One of the decisions is whether we should take the tube from the mouth and take it out. Does he have thoughts about that? OK, so let me prepare you for what may happen.

Dr. SCOTT LORIN: The ICU is at the apex of life and death.

We give a little bit of a dose of the sedative to make sure she feels no pain.

We have a tremendous amount of technology that prolong life. But ultimately, we can't overcome the patient's illness in most cases. They have cancer. They have kidney disease. They have end stage liver disease. They have these diseases that are life-shortening.

After we remove the tube —

Now, if you look at the history of critical care, the idea of an intensive care unit was for you to come there with a life-threatening illness and respond to the treatment and get better. Unfortunately, what has happened is that Americans are now coming to ICUs to die.

OK, we're going to take it out, OK?

NARRATOR: Today, more Americans die in hospitals than anywhere else, often after prolonged illness and many medical interventions.

DAVID MULLER, M.D., Dean of Medical Education, Mount Sinai: What modern medicine is capable of doing is almost what 20 years ago was considered science fiction. Essentially, you can support pretty much every body system for years because you can keep their lungs breathing and keep their heart beating, keep their blood pressure up and keep their blood flowing. That suspended animation state goes on forever. So the decisions at the end of life have become much more complicated for everyone involved.

NARRATOR: As health care costs continue to escalate, there is growing concern over the billions of dollars that Americans now spend each year on end of life care.

JEROME GROOPMAN, M.D., Professor of Medicine, Harvard University: There's a tremendous pressure now to reduce care to numbers, as though there's an algorithm for every decision. When you look at, you know, Medicare data on expenditures at end of life and what is very glibly termed "waste" — you know, 30 percent of all care is waste. That's the new mantra. It's very hard to know what that means. And it's very hard to bring that out of Washington and into a hospital and at the bedside, with a single individual facing death.

NURSE: Hi. Can you squeeze my hand? I'm going to put your head down —

NARRATOR: Robert Bernadini is 47 years old. He had a massive stroke two years ago and has been living in a nursing home. His cost of care is covered by Medicaid.

JULIA ROMERO, Robert's Wife: He was here two months ago, also with pneumonia. He got better, they sent him back to the nursing home, and came back in Tuesday. And since then, he's been on the machine.

NARRATOR: When Robert came into the hospital with pneumonia, he had a cardiac arrest and was resuscitated. He has now been on a ventilator in the intensive care unit for over a week.

JULIA ROMERO: The first two days, he was listening to me because he would — I would tell him, "Bobby, if you hear me, touch my hand," and he would. But now I don't know what it is. It's not happening like that anymore.

Dr. SCOTT LORIN: Nearly 95 percent of our patients cannot communicate, because of either their underlying illness or because of the heavy sedation we're providing. So what happens is, is that most of the care and interventions are discussed with the health care decision-maker, who may be a family member or a health care proxy.

In a perfect world, the patient designates a health care proxy and has a discussion about what their preferences would be at the end of life. But many of the patients who end up in the intensive care unit, those discussions have never happened, and this causes a tremendous amount of burden for everybody because they now have to make life and death decisions for someone else.

So we know that he has these underlying problems, right? So he has his emphysema, and we know he had a stroke, and his underlying HIV, as well. From the standpoint of his brain, it's unclear whether he's had long-term damage from the cardiac arrest, but it does appear that he's waking up. The bigger problem I think right now is his lungs. If we're unable to safely get him off the artificial respirator, remove the tube safely, then the next step is what we call a tracheotomy.

JULIA ROMERO: What is it? This? [points to her neck]

Dr. SCOTT LORIN: Right. Right. But there's a tremendous amount of pain and suffering that can go along with that, as well. It will certainly prolong his life. The question is, will it improve it?

JULIA ROMERO: I don't know what to do about this. Should I just let him keep living in this condition? I don't know. I don't want him to suffer anymore. I mean, I'm suffering, and I know he is also. And I can't handle this no more. But I just hope that I make the right choice. I don't know. I don't know. I really don't know.

JUDITH NELSON, M.D., Medical Intensive Care Unit: These are decisions about whether people are going to be alive or not alive, and if they are alive, if they are going to be living with dependence on life supports or not or in a quality of life that may or may not be acceptable to them. The risk is that somebody ends up in a position that they absolutely do not want to be in, and they are very vulnerable and voiceless and cannot extricate themselves from that position.

So she is very, very wasted, you know, very poor nutritional status. She's had multiple amputations of her digits from her underlying disease.

NARRATOR: Diana Reid is 31 years old and has scleroderma, a progressive disease that causes the skin to tighten and major organs to shut down.

Dr. JUDITH NELSON: You've got a patient who's in shock.

NARRATOR: When she first came to the ICU two weeks ago, she was in respiratory distress and had to be intubated. Although Diana told doctors that she did not want to be permanently dependent on machines, her family is not ready to take her off the ventilator.

Dr. JUDITH NELSON: Now let's address the family situation because we did meet with them yesterday and they're coming back in today, and we have some difficult issues that we've got to address with them. What we're doing is giving her every form of support that we can for all of her organs. She's getting maximum support from the respirator. She's getting medication to keep her blood pressure up. Her kidneys really haven't been working.

There are clinical situations where the odds are so overwhelming that someone can survive the hospitalization in a condition that they would find acceptable, then using this technology to support the physiology of the patient doesn't make sense. And yet for almost everybody involved, it feels much more difficult to stop something that's already been started.

FAMILY MEMBER: Right now, I want to keep her the way she is, on the respirator.

Dr. JUDITH NELSON: You want her on the respirator? OK.

NARRATOR: Marthe Laureville is 86 years old and has dementia. She has been intubated for two weeks. And now her daughters — Nadege, a nurse, and Sherley, a physician — have to decide whether to remove her from the ventilator.

NADEGE VIRUET, R.N., Marthe's Daughter: She loves life. She's the one that always say, "Oh, I call 911 right away." And even though she was not acknowledging anyone, we did know she was — she knows the surrounding. She lift up those two fingers and showed. Of course we applaud, we were so happy about it. I myself would not want to put Mom through a trach. And I'm not sure, at this point, what benefit is that. Will that prolong the life that she's right now for one month or two months? And although it is something that will be missed greatly, but to me, if it gets to that, it's something I would accept because of compassion for her. My sister, on the other hand, have a different opinion.

SHERLEY SCHWARTZ, M.D., Marthe's Daughter: I don't want to be the one to say DNR and to be responsible for her death before her time. I want to make sure that the help was provided and she gets it. I would not stop her from breathing. I would help. I will maintain her until the last minute. I mean, who am- who am I? Who are you-

NADEGE VIRUET: That's correct.

SHERLEY SCHWARTZ: We cannot decide. I want to see one day at a time, and take it.

NADEGE VIRUET: There are four of us. We will take a vote, including the grandchildren, and see what we come out to. And whatever comes out, that's what we're going to abide by.

NARRATOR: The Laureville family is meeting with doctors to discuss taking their mother off the respirator.

PHYSICIAN: We've come to a crossroads as to — with regards to a decision. People can't stay on a ventilator with tube for a long time, given the possibility of infections, and other, you know, problems that may arise. If it's successful, we remove the tube, she's able to breathe on her own. The question is, if we remove the tube and she does not breathe on her own, what should we do?

NADEGE VIRUET: First of all, I want to know, if she needs to be reintubated again, can she be placed the same way back orally? And if so, how long? Or does she have to have a trach, an actual surgical trach?

BARBARA MANN, M.D., Medical Intensive Care Unit: OK, so I think it's important to realize that what got her intubated is that she aspirated. Not on food likely, but just her own secretions. And that's a part of that natural history of dementia. So that will happen again. So if we take the tube out, it's highly likely that at some point, it's going to have to go back in. If we do that, we're going to be exactly where we are right now again.

SHERLEY SCHWARTZ: I would go for the trach, and that's what I think mother would have wanted irrespective.

PHYSICIAN: And the quality of life?

SHERLEY SCHWARTZ: The quality of life, the arguments will be the same because we know that, you know, that Alzheimer's is progressing. You know, we don't know if she's better tomorrow or she's not improving. But you know, we don't know exactly how long she's actually going to survive. Are we betting on how many days, how many months, how many weeks. You know, we don't know.

Dr. BARBARA MANN: You never really want to impose your own personal morals or beliefs on a family. But I mean, the truth is, I thought that probably the most humane thing to do would be to take the tube out and to see if she could breathe, and if she couldn't, then to just make sure she was comfortable. But that's my own personal bias.

NARRATOR: The family voted two to one that if the extubation failed, they would do the tracheotomy.

[medical team]

— OK. OK. Exhale. Exhale.

— Cough. Sit her up a little bit.

— Tous, tous. D'accord.

— Very good. She's breathing.

— Respiration 18. Heart rate 104. Oxygenation 95 to 96 percent.

— Ms. Laureville, hi. Voila. Good! We'd like you to breathe, OK?

Dr. BARBARA MANN: People surprise us all the time. Patients that we didn't think could breathe do breathe, and people we didn't think would get off life support do get off life support. So every time, it's scary because you are afraid that maybe you're guiding someone to stop treatment when maybe that's premature. So it's a very, very fine line.

JEROME GROOPMAN, M.D., Professor of Medicine, Harvard University: For every disease, there's always a tail end of the curve. There's a group of people who defy expectations. We don't know what will happen for any individual. We can look at probabilities and chances. But the way progress is made, the way advances occur requires going to the very edge and pushing very hard. Many times in science we fail, but that is what often drives medicine forward and leads to discovery.

NARRATOR: Here in the bone marrow transplant unit, a team of oncologists treats people with blood cancer who a generation ago would have died. But now a bone marrow transplant gives them a chance of survival.

KEREN OSMAN, M.D., Bone Marrow Transplant Unit: We are an extraordinarily aggressive group of physicians. We couldn't do what we do if we weren't very aggressive. We can endure some level of suffering among our patients because we believe that while we do make them suffer, that there is a greater good at the end of it, that they will come out the other side. And we've seen it enough times that we hold it as a belief.

NARRATOR: A bone marrow transplant is one of the most drastic therapies in oncology. And it's expensive. The cost of a transplant alone can be close to $250,000.

EILEEN SCIGLIANO, M.D., Bone Marrow Transplant Unit: Stem cell transplantation is viewed as the final strategy that has the potential to cure diseases that are otherwise incurable. We're using super-lethal doses of radiation. We're talking about radiation that patients were exposed to nearly with the A-bomb. And they get sick enough so that they can die from infection or bleeding or other organ toxicities. The mortality from transplant can be 25, 30 percent from the treatment.

On the other hand, we're dealing with diseases which will otherwise be fatal. So that's a struggle we have all the time, you know, trying to weigh the potential risk of death from the procedure and the risk of death from the disease.

NARRATOR: When Albert Alberti, 53, was first diagnosed two years ago with MDS, a type of leukemia, he was given only months to live. Married with three young children, he knew a bone marrow transplant was his only hope for a cure.

CELIA GROSSKREUTZ, M.D., Bone Marrow Transplant Unit: So Albert —

ALBERT ALBERTI: Yes.

Dr. CELIA GROSSKREUTZ: How's the skin doing? How's the rash doing?

ALBERT ALBERTI: Not good.

Dr. CELIA GROSSKREUTZ: Is it more itchy compared with last week?

ALBERT ALBERTI: Yes.

Dr. CELIA GROSSKREUTZ: Yeah, the skin is very, very red.

NARRATOR: Albert had one transplant, but it failed, and then he had another. Both were covered by his insurance. But with each one, he's had terrible complications, including pneumonia and a stroke.

ALBERT ALBERTI: When the first transplant didn't work, we went to the second one, and I still stayed positive. But then when I had the stroke, that sort of broke me. And I always felt myself as a pretty tough guy, but my emotions lately have been — so it's — it's — it's — it wears at you, these diseases. I had my appendix out once. And it was a week. I was back to normal. Broke my arm, six weeks and back to normal. It's 11 months, and they have no answers.

Dr. CELIA GROSSKREUTZ: We are just still debating about what to give you. We don't want to harm you, we want to help you. We are still looking for donors for you.

ALBERT ALBERTI: If I have another stem cell transplant, I would have to get stronger and heavier, right? Because the chemo treatment would —

Dr. CELIA GROSSKREUTZ: The stronger you are, the better it will be for you, so —

ALBERT ALBERTI: OK.

Hopefully, we'll find another donor and I can go through another transplant. And this one will be successful and I can get back to my normal life. That's — that's my goal.

DEBORAH ALBERTI, Albert's Wife: He's got to take every step possible. You know, it's — it's tough. But you know, why give up? What's that going to do?

CELIA GROSSKREUTZ, M.D., Bone Marrow Transplant Unit: Some patients want to know, "What are my chances of surviving?" But even when the numbers are low, they still go for it because the option of living is worth it. It's very difficult for me to say to a patient, "I don't think you have any treatment opportunity." I never said that to any patient. Never. I think I can't humanly say that to a patient. I always say, you know, "Well, we can do this or the other," even if it's in a palliative way. But I offer. I always say there is something to do.

[www.pbs.org: The conversations with the doctors]

NARRATOR: For nearly 9 months, John Moloney has been in the hospital with one complication after another. But now there is a chance to go home.

DEBBIE MOLONEY, John's Wife: This has been crazy. He has been hospitalized since January. It's October now. I'm watching the seasons go. I opened my pool. I closed my pool. He never even saw it. He hasn't stopped fighting in — two years now it's been. Two years, and he's just, "Keep going, keep going. I'm going to do this, and we're going to have time, and we're going to do things, and I'm going to get better." And that's still his mantra. That's still what he's saying.

NARRATOR: John Moloney, a corrections officer, was 55 when he was first diagnosed with multiple myeloma. He's tried every available treatment, including two bone marrow transplants, but his myeloma keeps coming back.

DEBBIE MOLONEY: It's hard to watch. You know, John was 6 foot 3, 250 pounds. He's, like, 150 pounds now. You know, it's very hard to see him like this. Sometimes when I come into the hospital, I'm almost gasping, you know, like, "Wow!" And I told John, I said "No more cancer treatment, no more chemo. I can't see you be any more debilitated." But then you talk and you say, "OK, let's try something mild" because doing nothing — it's scary to do nothing because what if — I don't want him to die, you know? So you feel like you want to do something.

JOHN MOLONEY: I'm ready.

KEREN OSMAN, M.D., Bone Marrow Transplant Unit: Can you believe it?

JOHN MOLONEY: I can get out of here, right?

Dr. KEREN OSMAN: Well, apparently, you did the stairs.

JOHN MOLONEY: I did the stairs. Pretty good, too.

NARRATOR: Although doctors believe they can no longer control his myeloma, John doesn't want to stop treatment, so they've agreed to send him home on a mild chemotherapy.

Dr. KEREN OSMAN: I still think you're not strong enough to get big-time chemo in the hospital. And let's face it, you've been here for so long, it's time to leave for a little while.

JOHN MOLONEY: Yeah, it's very time to leave.

Dr. KEREN OSMAN: But I think we've accomplished the goal that we tried to accomplish, to get you on some oral chemotherapy, to get you strong enough to go home, to keep things stable. And I think, you know, the goal was to go home, so —

JOHN MOLONEY: Definitely go home. Great.

Dr. KEREN OSMAN: OK, have a wonderful weekend.

JOHN MOLONEY: All right. Great. Thanks a lot.

Dr. KEREN OSMAN: See you Monday, OK.

DEBBIE MOLONEY: All right, John, you're back home for a while.

JOHN MOLONEY: No, no. It's back home.

DEBBIE MOLONEY: For good. For good.

KEREN OSMAN, M.D., Bone Marrow Transplant Unit: Some physicians can keep giving treatment, and some find it unacceptable. And that is, I think, where the art and science of medicine mix. The lines are blurred. And they're also different for different physicians.

Sometimes there are patients for whom I think about them and I wish we'd stopped earlier because I think they suffered unnecessarily, but in the moment, in the heat of that moment, maybe I didn't realize it at that time. Sometimes there are forces outside of the patient and myself that are the patient's family, other physicians. And so sorting that out can be very, very tricky in those moments. And each situation is slightly different.

NURSE: [to Dr. Osman] The significant other came and said this morning that he told her he was tired and he wanted to be a DNR. He still wanted everything done, but —

NARRATOR: A patient's girlfriend has just told doctors that he wants to sign a do not resuscitate order, a DNR. Norman Smellie has been in the hospital for two months suffering from life-threatening complications of his transplant.

Dr. KEREN OSMAN: Tell me what's happening. Are you having pain in your belly?

NORMAN SMELLIE: Yeah. Scared.

Dr. KEREN OSMAN: You're scared of what? What are you scared of?

NORMAN SMELLIE: [unintelligible]

NURSE: I don't want to do it if you're scared.

Dr. KEREN OSMAN: Norm, we don't have to do it. There's nothing wrong with the catheter. It's working.

NARRATOR: Although he's always told Dr. Osman that he wants everything done to stay alive, he's now starting to refuse treatments and she needs to know if he's changed his mind.

Dr. KEREN OSMAN: Let me ask you something. Rita said that you'd been thinking a little bit about if you ever needed a vent, what would you do, or what you would want us to do. And have you thought about that more and do you want to tell me something about that?

NURSE: If something should happen and you were to have trouble breathing, do you want to be put on a respirator to help you breathe?

NORMAN SMELLIE: [nods]

NURSE: You do? Is that a yes?

NORMAN SMELLIE: Yeah.

NURSE: OK. All right.

Dr. KEREN OSMAN: That's what you always did express to me, but I want to make sure that hasn't changed. Listen, I want to say something that you should think about today, but you don't have to say anything about it now. I just want to say it to you, OK? If you're tired and you don't want us to do this anymore, that's OK with me. But you've got to let me know. I don't want to put you through procedures that you don't want to go through, but I don't want to not do the things that are right in terms of trying to help you to get better. OK, Norm.

This is what I told him. I told him if he doesn't want to do it anymore that —

NARRATOR: Norman's girlfriend, Kyimar, has been with him 24 hours a day for the past two months.

Dr. KEREN OSMAN: I'm trying to read from his face —

NARRATOR: But she is not his health care proxy.

Dr. KEREN OSMAN: I want to respect what he wants.

KYIMAR THEIN, Norman's Girlfriend: But he wants to sign DNR.

Dr. KEREN OSMAN: He didn't say that just now. We asked him.

KYIMAR THEIN: He said it to me.

Dr. KEREN OSMAN: I believe you that he said it to you. I think he —

KYIMAR THEIN: And then I told —

Dr. KEREN OSMAN: This is what I think is — I think it's kind of going — I think he's — everything is yes, no, yes, no. I ask, Who is the health care proxy? Phyllis. If you can stop breathing, do you want us to put you on a vent? Yes.

KYIMAR THEIN: Oh, he said it?

Dr. KEREN OSMAN: But I think one minute this way, one minute that way.

KYIMAR THIEN: I know him, what he want. I'm not the official health care proxy, but let me tell you, I don't want to see him suffering, you know, people poking him and everything. Nowadays, he doesn't want to be bothered. You know, "Let me go. Let me go." It's not one time he said it, so you know, he's tired.

NARRATOR: It's the next morning, and overnight, Norman got worse. His liver began to fail. So doctors called in his sister, Phyllis, who is his health care proxy.

PHYLLIS HUNTE, Norman's Sister and Health Care Proxy: A month ago, we discussed the health care proxy and he said to me, "I want everything." That's it. He said, "I want everything." He's a young man. "And you want everything?" I said, "OK, Norman, those are your wishes. I will do it." He knows his illness. He knows. So if he says he wants everything to stay alive, that's what I'm going to do.

NARRATOR: Although Kyimar [sp?] still believes he wants to stop treatment, Dr. Osman and Norman's sister decided to send him to the intensive care unit to see if he could be stabilized.

Dr. KEREN OSMAN: Sometimes it's not completely clear what's reversible, what isn't, will they rally from this moment from this infection. You can count all the things that are moving against them, but that doesn't necessarily mean that the prognosis is dismal. Sometimes those things can still — and it only takes a little bit sometimes to put them over the edge into — back into the living. But in those wee hours of the night when you think about the patients and "Am I doing the right thing?" and so on, I think there are a lot of question marks that come up. And sometimes you fight to the bitter end and you still lose.

[www.pbs.org: Medicine's new complexities]

DAVID MULLER, M.D., Dean of Medical Education, Mount Sinai: The degree of uncertainty you have to deal with now as the doctor is — it's hard to describe how much greater it is than it ever was before because there's so much innovation and because of how rapidly it evolves. There's almost always something else that we can do to put off the inevitable — another course of chemotherapy, a little bit more radiation. What if we got one more CAT scan? What if we explored this person's belly one more time? There's always the nagging concern in the back of your mind, "Have I really left no stone unturned?"

Dr. JEROME GROOPMAN: In the context of bone marrow transplant, it's even more uncertain because this is a field of medicine that has advanced so much, where new treatments and new interventions can change outcome so that now many, many lives are saved. But you cannot escape the reality that too often, that success is not the case and you risk amplifying suffering.

ADRIANA MALONE, M.D., Bone Marrow Transplant Unit: Hi. Hey, what happened?

NURSE: Sorry you're back.

ALBERT ALBERTI: Around 7:00 o'clock last night, I was feeling very unstable. My balance was off. And I put my children to bed early —

NARRATOR: Three weeks after his clinic visit, Albert Alberti was back in the hospital.

ALBERT ALBERTI: And I just fell off the toilet bowl, slow motion. I couldn't stop myself.

Dr. ADRIANA MALONE: Are you having any headache today?

ALBERT ALBERTI: No.

Dr. ADRIANA MALONE: Any change in your vision?

ALBERT ALBERTI: No.

Dr. ADRIANA MALONE: Can you try and stand up?

ADRIANA MALONE, M.D., Bone Marrow Transplant Unit: Mr. Alberti was in a really horrible position because not only had the first transplant failed, but his underlying disease has had recurred. And he was so debilitated that the reality of him being strong enough to withstand the rigors of another transplant was minuscule.

All right, so this is what we'll do. I'll go look at the CAT scan and then we'll speak with the neurologist.

One thing that makes our patients different from other patient populations is by the time that we transplant them first time, second time, they've been through so much that at that point, stopping therapy is not even within the mindset of the majority of our patients. Stopping treatment almost means that we acknowledge that death is near.

ALBERT ALBERTI: We'll make it through this. Have to.

NARRATOR: John Moloney is also back in the hospital. Home for only a week, he was brought back in on an emergency admission.

Dr. ADRIANA MALONE: Hi. How are you? You definitely are a lot better than yesterday.

JOHN MOLONEY: I didn't even know what day it was today when I woke up. And on Monday, I was in good shape. We started out the door, and I'm telling you, it's like somebody shot me.

DEBBIE, John's Wife: That was Friday.

I kind of wish we didn't do that second stem cell transplant, but he doesn't. He said, "I had to take the chance. I had to." You know, so we have different feelings on that. You know, I think everything went downhill from that. The chemo that he had prior to the stem cell transplant, even though he lived, he survived, he hasn't walked since.

Dr. ADRIANA MALONE: I do think that the disease is getting worse. So we need to think about where to go from here. You know, knowing that you've had many, many therapies for your myeloma, including two transplants, and now when we make a decision, we need to think very carefully because many therapies that we give you may affect your quality of life or may even shorten your life.

So things to think about would be, you know, to go home with a lot of support, with home hospice, would be a possibility, or not. Or if John wants to try further therapy, then we can try to tweak this regimen that you've received. But I'm not sure it will really help.

DEBBIE MOLONEY: But if you're saying to do therapy is not going to help — so why not just do nothing? Would it still stay the same?

Dr. ADRIANA MALONE: I think doing nothing is a very is a very important consideration. It really depends on what you want.

JOHN MOLONEY: All right. We'll talk.

Dr. ADRIANA MALONE: All, right, John. I'm going to be back to check on you a little bit later, OK? All right. All right. Debbie, I'll be back later, OK?

DEBBIE MOLONEY: You can't keep bombing your body, John. You can't. That's the bottom line.

JOHN MOLONEY: Bomb me. I'd rather be like that than dead.

JUDITH NELSON, M.D., Medical Intensive Care Unit: Nobody wants to die. Nobody wants to die. And at the same time, nobody wants to die badly. And that is my job. My job is to try to prevent people from dying, if there's a possible way to do it that will preserve a quality of life that's acceptable to them, but if they can't go on, to try to make the death a good death.

Were you here during the night? OK, good morning, Norman. We're going to just listen to your chest and do a few other things on the exam, and we'll try very hard not to hurt you in any way. Can you just open your eyes up a little bit for me and look all the way up?

NARRATOR: It's been two days since Norman Smellie was brought to the ICU from the bone marrow transplant unit, and he has continued to get worse.

Dr. JUDITH NELSON: All right, don't push too hard because he's got pains in his thigh.

NARRATOR: So Dr. Nelson wants to meet with Norman's family and Dr. Osman to discuss his prognosis.

KEREN OSMAN, M.D., Bone Marrow Transplant Unit: He has a lot of medical problems, as you know, and he doesn't have terrific counts. He got grade 4 graft-versus-host disease of the bowel, which I have yet to see somebody recover from and live through. He also has CMV. So he has a lot, a lot of problems.

You know, I had many conversations with Norman myself about his prognosis and what would happen and what he wanted. But I think you can have a lot of conversations about these things, but I think when the moments come, I don't think that anybody can be completely prepared for what it's really all about.

[www: Misconceptions about end of life]

PHYSICIAN: So you know he had the biopsy the other night.

PHYSICIAN: It looks like that is the GVHD.

PHYLLIS HUNTE, Norman's Sister and Health Care Proxy: But I have a question. And I would like a straight answer. Is my brother dying? I think I need a straight answer.

Dr. JUDITH NELSON: What do you think, Phyllis? What do you think?

PHYLLIS HUNTE: Wait. Wait.

Dr. JUDITH NELSON: I mean, I think we can say what we think. But what is your gut feeling about it?

PHYLLIS HUNTE: My gut feeling is that there's not going to be a positive outcome here.

Dr. KEREN OSMAN: Right. Right.

PHYLLIS HUNTE: OK? Because I don't see Norman walking out of this hospital.

Dr. JUDITH NELSON: I think you're right, Phyllis. I think he's dying. And we have trouble picturing him leaving the hospital also. I think he has too many problems, based on what Dr. Osman is telling me and what we've observed in the ICU, and they're all playing against each other in a very bad way.

KYIMAR THEIN, Norman's Girlfriend: He's been telling me he doesn't want anything.

Dr. KEREN OSMAN: But remember when I asked him upstairs.

KYIMAR THEIN: Yes, he doesn't want anything since he was upstairs.

PHYLLIS HUNTE: Unfortunately for me, when I come, he never says any of those things to me. I just don't want him to die in pain!

Dr. JUDITH NELSON: He's not going to be in pain. He is not going to be in pain.

The uncertainty is the most disturbing part of the decision-making. And the availability of the therapies has created this fiction that we can orchestrate this one way or the other, when the truth of it is that, for all of this magnificent technology, the underlying illness and the medical condition of the patient are far and away the most important factors in determining the outcome. But it feels like, when you have the technology available, that your decisions to use or not use it are like the decisions to allow life or not allow life. And that's not a position that any of us wants to be in.

NARRATOR: After meeting with doctors in the ICU, Norman's family decided to sign a DNR and focus exclusively on comfort care.

KEREN OSMAN, M.D., Bone Marrow Transplant Unit: When there's no chance that things are going to get better, then I think the only hope you can offer is for that good death, whatever that is, and for allowing some comfort and some acceptance of the situation. But you know, I don't know. I think that the concept of a good death probably matters more to those who are around the one who is dying because they hold that memory in their mind. But I don't know that the person who's going through it — who knows?

[www.pbs.org: Watch this program on line]

DEBBIE MOLONEY, John's Wife: He won't say that he's going to die from this. You know, as crazy as that sounds, he still won't say it. I think he thinks if he says that, he's giving in. He's giving in to the cancer. He's giving in and he's saying, "There's a possibility I might die," and John won't say that. I don't know, maybe I'm terrified now. I think this week has changed me because I think I really believed that he was going to get stronger, and I really didn't think this was going to happen. So I think now I'm scared.

JOHN MOLONEY: Hey, girl.

Dr. KEREN OSMAN: How are you? You're still bleeding a lot?

JOHN MOLONEY: Oh, I was [unintelligible]

NARRATOR: Its been one week since John stopped chemotherapy, and now he's bleeding internally. Earlier in the day, doctors asked if he wanted life-sustaining measures to keep him alive or if he wanted to sign a Do Not Resuscitate order.

Dr. KEREN OSMAN: So you spoke with Dr. Isola today?

JOHN MOLONEY: Yeah.

Dr. KEREN OSMAN: What did he say?

JOHN MOLONEY: We'll go on a course of treatment. And then we'll go on, make a choice, and we'll see what happens. And I'll put a tube in so I don't — what?

DEBBIE MOLONEY: John, you're not understanding, honey. You're not understanding. You're not understanding what he's saying to you. He's saying if you ever go into distress again, you have a choice to say, "Yes, do everything you can, I want to live on life support," or, "No, I've had enough." Dr. Isola is telling you that it's not going to help. It's not going to make you better at that point. If he thought it would, he would do it. But at that point, it's just sustaining your life. And that's the choice you have to make.

JOHN MOLONEY: Oh, all right. That's what I wanted to talk to you about.

DEBBIE MOLONEY: Right, right. OK? And the other thing is, to get the blood under control — that's what Dr. Osman was just talking to you about.

JOHN MOLONEY: OK.

Dr. KEREN OSMAN: But I don't know — that's why I raise it because I'm not sure that you're going to be able to get back home again. I think we could do everything to get you back home. But then what might happen is that the bleeding might start again because we're not really doing anything to definitively fix that bleeding because we really just can't anymore.

JOHN MOLONEY: Right.

DEBBIE MOLONEY: We'll talk about things. It's a lot to take in today. It's a lot of stuff that has been said that John's not prepared to hear.

Dr. KEREN OSMAN: That's OK. That's OK. Take your time.

JOHN MOLONEY: I'm prepared to hear anything. I told you.

DEBBIE MOLONEY: I know.

JOHN MOLONEY: I ain't going anywhere.

Dr. KEREN OSMAN: Do you have, like, flexibility to take a little bit of time?

DEBBIE MOLONEY: I don't know. I'd have to —

Dr. KEREN OSMAN: Do you need me to call your boss?

DEBBIE MOLONEY: Like how much time?

Dr. KEREN OSMAN: A couple of weeks.

DEBBIE MOLONEY: And you're saying that's when it's at the end.

Dr. KEREN OSMAN: Yeah. So you have your time with him and he has time with you and you both can be at home.

DEBBIE MOLONEY: I hope!

NARRATOR: John never did sign a DNR, but he did agree to go to hospice. One day later, he would die.

Dr. KEREN OSMAN: Norman, hi.

NARRATOR: Two days after his family decided to stop aggressive treatment, Norman Smellie would die from complications of his transplant.

Dr. KEREN OSMAN: I'm not sure that the transplant prolonged his life, but I'm not sure that he would have lived much longer without it. He died a much more difficult death after the transplant than he would have died had he not chosen that. And I'm not sure that we added to his quality of life at all. So of course, there's some guilt. We did that to him. Now, what — and so that's — that's a — that's — yeah. I didn't want that for him.

DEBORAH ALBERTI, Albert's Wife: What's my name?

ALBERT ALBERTI: Beefsta.

DEBORAH ALBERTI: What's my name?

ALBERT ALBERTI: Beefseeda.

DEBORAH ALBERTI: My name.

ALBERT ALBERTI: Day coin Benicia.

DEBORAH ALBERTI: No, me, Debbie.

NARRATOR: A few days after being readmitted to the hospital, Albert Alberti had a massive stroke. One week later, he would die.

JEROME GROOPMAN, M.D., Professor of Medicine, Harvard University: Patients with severe illness will go with you to the edge, even for that small chance that they'll beat the odds and they'll be the one who will emerge. Often they're not, but sometimes they are. And we should be very careful that we don't label as futile or meaningless some treatment or some attempt to push the envelope because otherwise, we will stand in place.

NARRATOR: Only one day after Marthe Laureville surprised everyone by being able to breathe on her own, she had to have a tracheotomy. She has now been living on a ventilator for over a year.

JUDITH NELSON, M.D., Medical Intensive Care Unit : At any given time, 100,000 people are chronically critically ill, on ventilators, all over the country. It's estimated that the cost of caring for these people is in the $20 billion to $25 billion range annually. And these are the broken survivors of intensive care. And the better intensive care gets, the more of these broken survivors we have.

DAVID MULLER, M.D., Dean of Medical Education, Mount Sinai: What we've done in medicine, by offering more and more and being more and more aggressive, is to create this sort of culture of expectation that when you come, you're coming to get something more. It's really in this country, maybe alone in the world, that we allow our doctors to continue to practice in that way, and we allow our patients to continue to have that expectation.

There's no question that the technology has saved, in a meaningful way, hundreds of thousands, if not millions of lives. But with those advances and all of that progress comes an ultimate tradeoff. And the toll is sometimes devastating on the patients themselves, on their family, their loved ones, and on the health care system.

Facing Death

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posted november 23, 2010

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