The Big Issues
Excerpts from FRONTLINE's conversations with doctors and family members who were part of this report.
Talking about Death
Barbara Mann, M.D. Mount Sinai Hospital, Medical Intensive Care Unit
It's really hard. I have a patient who's in his 40s who is dying of end-stage lung disease. And he's so young and so nice, and I'm so focused on getting him a transplant, and I've spent the last year trying to get him over to get a transplant. And it just occurred to me that I've never discussed it with him. And it's terrible. I mean, I see this all the time, the consequences of it.
But it's just human nature to want to fix things. And it's very uncomfortable, especially with someone who's sick. If someone's well, it's kind of easy to have the conversation. It's very hypothetical. But if someone's kind of sick, and it's actually a pretty good possibility, then it's much more difficult to say that they might die. ... It's just a hard conversation.
Should you take your lead from the patient, or should you be the lead?
I think it's our obligation to be the lead in that. I think people are really scared to talk about it, and it's uncomfortable, and everyone wants to focus on a good outcome, not a bad outcome. But I think it's our obligation to at least broach the subject, at least lay the groundwork, if not the patient to talk to you, for them to talk to their family members about it.
We talk about "a doctor" as if it's one person, but you're each so different.
It's really difficult for us, too, because we're coming at it with our own belief system, our own morals. It's difficult.
Keren Osman, M.D. Mount Sinai Hospital, Bone Marrow Transplant Unit
How direct are you with your patients in talking about death?
I always say, "You could die from the transplant." I always say that. It's important that patients understand that the transplant has within it the risk of death. Sometimes that's the first time that the word is said between us. But I always say it.
Sometimes patients ask me questions indirectly, and I feel that what they're asking me is whether they're dying or whether they're going to die. So sometimes I just say "Are you asking me if you're going to die?," or, "Are you asking me whether you're dying?" And I try to have that conversation if I feel that that's what they really want to be asking me.
When dealing with a patient who's nearing death, where it's no longer theoretical, how do you find your way with a patient who will have his or her own needs?
That's interesting because sometimes the patient's needs are different than the family's needs at that time. And sometimes the patient can hear it and the family can't, and sometimes the reverse is true, so that in those situations, I do have to take the cue. I hope I'm right about it. I try to be sensitive to what the family wants to talk about and what the patient wants to talk about. If I get the feeling that they can't talk about it, I don't push it, because there is a subtext and everybody knows what's happening, and there's no reason to overdo it, to be aggressive about it.
So I try to really spend a lot of time listening so that I can help them get where they need to go. And sometimes then the euphemisms are really useful, and then that's when you can say things like, "You know, I think that John is really very sick," or, "I think that we've gotten to the point where there's nothing more that we can do about this illness. But that doesn't mean that there aren't things we can't do for you and for him. We can control his pain. We can help him breathe more comfortably." And that's when we begin to shift the conversation.
And sometimes patients will ask, or the family will ask: "How will it happen? How will they die? I need to know what's going to happen." Well, I can't predict that, but sometimes I can help them have a sense of what might be the final event. But I don't know for sure.
[How does it feel] to have those conversations?
It feels awful. It feels awful because you know the pain that they're going through, because they love their family member, and you can feel that pain with them. It is terrible. But sometimes also it's such a relief for the family to be able to talk about it and to be able to make the plans. And it's awful in a lot of levels.
It's awful because the family is really devastated and sad, even if they've seen it coming for a long time. And it's awful for me because often I've known the patient for a long time, too, and I've gotten very attached to the patient and very attached to the family. And on some level it's also awful because we weren't able to cure them with the transplant. And that's a terrible feeling. I mean, even if you know that you can't, [that] doesn't mean that you don't want it to happen. Even the patient knows that the chances are small. It doesn't mean that you don't wish it were otherwise. And there's the sense of loss for the family, but there's a sense of loss for us too. ...
How often do you deal with death in your work?
We deal with death every single day. I don't say that every day somebody is dying or somebody dies, but it hangs over all the conversations every single day. There isn't a conversation in which it isn't a subtext, even if it isn't explicit, because the diseases are so grave that that is always in the back of somebody's mind. And of course because the treatments can be quite toxic, it's of course in the back of our minds, because we don't want to hasten death either. That's not our point. So I think we cope with death, on one level or another, several times a day, every day.
How do you manage that? What is your coping strategy?
I'm not afraid about death. I mean, I don't want the people who I love to disappear, but I guess you have to get to some point where you have an almost philosophical acceptance of it, which is what I was saying. It's universal. All of us will die. There's no question about it. And I don't think that when it comes to illness necessarily, death is unfair. I don't think that way about it. I don't think about it in the same way that I think about it when it comes to war. So I understand and I can accept that it happens. It will happen to me, and it will happen to those that I love, I'm sure. And I hope that it doesn't happen to my children before it happens to me, although I know that there're people for whom that's the truth. And so I know that death is part of life.
It's funny to be that accepting about it and yet fight against it all the time. But I think you have to be able to accept it, because if you can't accept it, you cannot do this work every day. You see it all the time. And if it's something that gets you at your core, that you find is unfair or not okay, then I don't think that you could keep going back day after day. And there are people who start doing this job and then they say, "There's too much death. I can't take it." Sometimes death also is the relief. The part that's hardest for me is the suffering.
Judith Nelson, M.D. Mount Sinai Hospital, Medical Intensive Care Unit
What happens in end-of-life conversations? What do you say to families?
[People] don't come to the ICU for the end of life. That's not why they come. They come there because they would die if they didn't come there, and the idea is that some extraordinary effort is going to get made so that they won't die. And yet many of them do. So the conversation in the ICU is a different one than the conversation with someone who is on a downhill course over a longer period of time, who has not come with the expectation of some miraculous technologic[al] intervention.
Having said all that, the conversations -- wherever they occur and in whatever context -- are always difficult. And people, whether they're coming to an ICU or not, often have very high expectations of what medicine can achieve, even if they have a long, chronic, difficult illness that is inexorably going downhill with a few spiky improvements in between. So we are having these conversations in the context of at least a possibility that the death might not occur. And that is the biggest challenge of all.
What I try to do is to make sure that people are alerted to the possibility of death so that this process of comprehending that possibility can be set in motion, hopefully enough in advance that the person has time to absorb it a little bit and process it.
Scott Lorin, M.D. Mount Sinai Hospital, Medical Intensive Care Unit
How direct are physicans when talking with patients and families about death?
In my experience, physicians rarely use the word "die" or "death." We do training sessions with the residents, and one of the things we teach them is to use the "D" word -- death. When it’s unclear what’s going to happen to the patient, we teach our residents to tell the families that the patient "may die," not to use terms like "may not survive the hospitalization," ... but actually the term death, because what we need to do is prepare the family what may be an eventuality.
When to Stop Treatment
David Muller, M.D. Dean of Medical Education, Mount Sinai School of Medicine
Uncertainty in medicine is greater now than ever before. Explain.
I think the hardest things for doctors today, in the context of what we've been discussing -- end-of-life decisions, goals of care, the family's expectations, the patient's expectations -- is the uncertainty of whether they're making the right decision. It's never easy to talk to a patient about death and dying, or to their family. It's much harder when you know that there's almost always something more out there that can be done: another course of chemotherapy, a little bit more radiation.
So when you have those tools at your beck and call, and some data sometimes and sometimes no data at all except for a patient who's hoping for sometimes more, or a family, it makes it harder to have that conversation, but it also is a nagging concern in the back of your mind. Have I really left no stone unturned? Have I really thought of every conceivable thing I could do? Have I asked every expert consultant in my group of peers whether there's anything else that I can do? It makes it very hard, not only intellectually but emotionally, to then have a conversation with a patient that sounds mostly like, "Let's talk about death and the end of life," because you know that there are more things out there, and yet at the same time they are not things that are going to provide a true extension of life in the way that the patient would like to lead their life.
And more complicated when many treatments themselves bring a patient to the brink of death? How much harder does that make it to know when it is the end?
That's an interesting question. I mean, the concept of a particular treatment being so aggressive or so harsh that it might bring someone to the brink of death, I think is not as much of a factor, only because when you think about the other variable we talked about before, which is, "Is the patient at a stage of their life when they can no longer benefit from things like this?" is, I think in my mind, much more important than how aggressive or dangerous the therapy is.
So that if you take someone who's 20 and has acute leukemia and is going to die, and you've got to look at them in the face and say, "Look, I've got a therapy, but it's very, very dangerous, and the percent of people who die from it is a high percent, 10 to 20 percent, which is very, very high," I think that's an easier discussion for doctors to have, and for many patients, an easier decision to make, because they've got a shot and they've got a long life ahead of them, and in a sense, the potential benefit is worth the risk.
If you have someone who's 70 or 80 or 90, and it's not just age that has to do with it; it's everything that we talked about that comes with it -- chronic illness, frailty, dependence in a lot of different ways -- and that person has leukemia, maybe not acute leukemia, maybe it's chronic, and they need to have an intervention that's very, very aggressive and might bring them to the brink of death, it's a different kind of discussion to have. But I don't think that it's about the therapy and how dangerous it is. I think it's about the context in which you have that discussion.
Knowing when enough is enough. You really don't know. The patient could be the tail end of the curve and could come back. Those complications are much more difficult.
Yes, absolutely. The uncertainty today is exactly because you don't know. You know intellectually. You've read the papers, and you know in general how patients do, and you can typically break them down into categories, and you have that sense. But it's never certain, ever. It's like the patient who comes to your office with chest pain. Well, you could send everyone with chest pain to the emergency room if you're a doctor, but it makes you a lousy doctor because half of them will have heartburn and another quarter of them will have some[thing] muscular, pulled something in their chest wall, and only a tiny percentage of those patients really need to have immediate attention and maybe an intervention. But the reality is, in a doctor's practice, sometimes they'll send someone home with chest pain who's really having angina, and you can't be entirely certain. And sometimes they'll send someone to the emergency room who just has some heartburn.
So all of medicine carries with it that uncertainty. I think that the tension around it gets ratcheted up when it's end-of-life care, or serious acute illness care on top of chronic illness, and the outcome may be death -- even if it's not a "dying" patient, but someone who could die, either from their illness or from the therapy. And you never ever really know. You know kind of what the odds are, you know what the relative risk is compared to other patients, but you really have no idea.
Scott Lorin, M.D. Mount Sinai Hospital, Medical Intensive Care Unit
The lines of prolonging life and prolonging death are blurred at this point. We have a tremendous amount of technology that prolong life. But ultimately, we can’t overcome the patient’s illness in most cases. If you look at patients who are in the intensive care unit, the majority have a life-limiting illness. They have cancer, whether it be metastatic cancer or something like leukemia. They have kidney disease. They have end-stage liver disease. They have these diseases that are life-shortening. So [what] we’re able to accomplish in the intensive care unit is to prolong life. ... But ultimately, these patients typically succumb from their underlying diseases. And therefore it gets completely blurred about what we’re trying to accomplish.
Celia Grosskreutz, M.D. Mount Sinai Hospital, Bone Marrow Transplant Unit
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, "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.
I don't know. When you go to a doctor and you are sick, you want to hear someone that can help you, not just say, "Just go and die." I think it's too cruel to hear that. Even if what you are telling them, in the back of their mind they understand that this is not [a] cure, but at least it's a treatment, it's something that can help them. I don't know. I cannot say the cruel words: "There is nothing else I can do for you." … Maybe there are some other physicians that they don't have problem with that. I think palliative care doctors are more trained for that and better trained for that, maybe. I think they have different type of approach and they are more realistic sometimes with patients. I certainly have many patients that don't have any other treatments, and we don't have anything to offer, but I can't say, "We don't have anything else." We just say, "Well, we will do this and the other to make you feel more comfortable, give you transfusion, we will give you this medication that will control the disease." But I can't say: "[Maybe] it's my problem." I should. But this is kind of personality things. I think patients come to you because they want to hear "Give me something." You know, "I need help. Give me something." So we try to offer some treatments to help them to feel better. …
I think they come to you because they want something. If not, they wouldn't come anymore. They would just say, "I'll just stay here, stay home and die home." They don't do that. I mean, if they come to your office, they know that you're a bone marrow transplanter and that you do all the aggressive treatments. If they come to you, it's because they want to hear something that you can offer.
Do patients ever ask you if they're dying?
Very rarely to [never]. Most people have a denial of their diseases. It's more common to be in denial of their progression of the disease or their refractory of the disease that they have, and they're in kind of denial because it's kind of a protective mechanism [that] people have. They don't want to accept that they are dying. It's well written that the denial process when you are close to die, the denial of your state of the disease is kind of normal reaction of the human being.
Eileen Scigliano, M.D. Mount Sinai Hospital Bone Marrow Transplant Unit
For me, the hardest part comes when patients have already had their transplant and are suffering from a serious complication and going into renal failure, or might need to be intubated. It's impossible for me to completely let go of any hope that the patient may get better. Nobody wants to give up. And sometimes it's obvious in an individual patient [when] they're clearly at the end. It's sometimes harder for me to see that, I think, than others around me. And more often than not, I feel like I'm the last one to come to the party and say, "This is really over for this patient. Let them go."
And I don't want my patients to suffer needlessly, but there's always something in me that feels like if we can get them through this, then maybe they'll turn around; and [will] be on dialysis [a] little while, they'll get intubated for a little while. I can be a little bit unrealistic. And that's not always good for my patient. It sounds like it might be a good thing never to give up hope, but sometimes it's not always the right thing to do, and so I struggle with that a lot, trying to be a little more realistic.
And I think sometimes, with these patients in particular, you become very close to your patients. Taking care of patients like this, you take care of them very intimately for a pretty long period of time. Not always years and years like internal medicine patients that you see over many, many years, but very intimately during a relatively short period of time. And you get to know them and their families, and you don't want to let them go. You kind of made a commitment to them. You're offering them this horrible treatment to try and cure them, and you just kind of want to push on until you've either cured them, gotten them out of the hospital, or other things have happened.
When treatment brings them to the brink of death, it must be more difficult to know when it's really time.
Right. With these therapies, they're going to get very, very sick. It's not always so clear and so obvious when they've crossed the point. You can never predict when a patient is going to die. We've had patients who've been intubated, and the mortality for a bone marrow transplant patient intubated, as the MICU people may tell you, is 100 percent or approaches 100 percent. But when we see those patients intubated, all I can see is the possibility that that patient may recover ... once their graft comes in, once the antibiotics kick in.
It's almost as if, once I've made the decision to transplant this patient, then I've made the decision to take this patient through their transplant and to continue to do everything. And it's very hard to know prospectively -- obviously retrospectively it's easier to know -- when really the patient has crossed the line and when their mortality is 100 percent. And also, you know, do you wait till 100 percent? Who knows the number? If a patient only has a 2 percent chance of surviving, is it worth it? What do you do? And we rely a lot on the patients and their families. But sometimes the patients are relying on us and can't make that decision and want guidance from us. That's very difficult. It's hard to know.
How difficult it is to stop. Part of you won't give up?
I think it's part of the nature of being a hematologist and a stem cell transplanter. ... You're doing something that has a great chance of harming the patient and is a potentially life-threatening procedure. So when they get really sick, yeah, we know that was going to happen. And so I think we're more willing to accept a higher degree of suffering and complications without saying, "This is the end," because we've seen this before, and sometimes we see patients recover from that. And often we're dealing with younger patients. And so I think we're more willing to accept patients being that sick, without saying, "It's enough," and giving up.
Medicine is always trying to push the envelope, to prolong survival, maybe at all costs. And I don't think that's always appropriate. Maybe this is paradoxical. I am a big fan of quality of life, as opposed to quantity. And I don't think that people should necessarily live as long as they can, simply because they can live as long as they can, if they are suffering. But this is a very particular situation, and when we have a patient who has a disease for which we are actively treating, ... to say we will continue treating this disease, I think that's different than just giving everybody every therapy that's available under any circumstances. I'm not saying that medicine should do that. I don't think that that's right. But once you've made that decision to treat the patient, rightly or wrongly, we continue to support him through that therapy that we initiated. ...
It's very easy to see in retrospect, when you know what the outcome is going to be, that maybe you should have stopped a week or a month [earlier], or never even offered this patient a second transplant. ... If he had gone to another institution, they may not have offered him a second transplant. But when you're in the actual throes of the situation and with the family and having these discussions day in and day out, and you know the patient intimately, it does become blurred. It's not such an easy decision to make, to say to his wife and to the patient: "It's enough. We're not going to do a second transplant, ... nothing is going to help you. We can relieve your suffering. We can make you feel better. But this is it. ... It's very difficult to say that. It becomes very difficult to say that to the patient.
Barbara Mann, M.D. Mount Sinai Hospital, Medical Intensive Care Unit
Did you have to offer reintubation? Was there any point where you, as a physician, could have said no?
No. We can't, as physicians, make that decision. I think in other states you may be able to, but I know that in New York, if a family wants you to intubate and wants you to resuscitate someone, you have to do so. It's not like other medical procedures, like dialysis or a transplant or a blood transfusion, where we can make that decision independent of a family. If a family wants you to intubate, you have to.
Was it painful to do something you didn't believe in?
I find it really hard. And emotionally, I think that's what I struggle with the most in terms of critical care. I mean, not too long ago last year, I had to put a huge dialysis line in a man without any sedation, because we were afraid he would need to be reintubated. And I really made him suffer, I think. And he died the next day. And I didn't want to do it, and I didn't think it was the right thing to do, but it was kind of the similar situation where the family wanted us to do everything. And now I'm stuck knowing that on this man's last day of life, I tortured him with big needles. You know? So I find it really hard.
How do you get through that?
It's hard. I try to leave work at work, but that's not always possible. I try to focus on the good outcomes, situations where I know we've done good by someone. And I try as much as possible to make sure that my patients don't suffer. But when they do, and when you know that you're the cause of it, it's really hard.
Was Mrs. [Marthe] Laureville an example of prolonging death, in your mind?
I think so. She is not doing many things on her own right now. Her heart is working. Her kidneys are working OK right now. But we're artificially feeding her, breathing for her. She doesn't really have much of a quality of life right now. So I think in a sense, yeah, we're prolonging her death rather than prolonging her life.
In your mind, would that be a bad death for her?
Again, it's hard for me to impose my own beliefs, but it's just human nature. I wouldn't want a death like that. Now I've said it on camera so it'll be on the record permanently. But I wouldn't want to die like that. I would so much rather die peacefully with my family around me, not hooked up to machines, than in a hospital or a nursing home somewhere, hooked up to a million machines, suffering.
Keren Osman, M.D. Mount Sinai Hospital, Bone Marrow Transplant Unit
How do you know … when the treatment itself brings the patient almost to the brink of death? Are those lines blurred?
Yes. The lines are blurred, and they're also different for different physicians. Some physicians can keep giving therapy, and some find it unacceptable. And that is, I think, where the art and science of medicine mix. Some of that really comes from something that is not what you learn in medical school but who you are a human being. And I think sometimes we stop treatment as physicians maybe because we suffer together with the patient. We can't stand seeing the suffering anymore. But also, I hope that we stop because we believe that it will not help, and more therapy will only hurt. That is the kind of philosophy by which I function. I don't want to hurt the patient anymore, especially if the chances of them getting better are slim to none.
But you're right. It's blurry; it's difficult to figure that out. 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. So sorting that out can be very, very tricky in those moments. And I think it's easy to say: So many dollars are spent at the end of life, and there are all these kind of policy statements. But as you know, I think it was Woody Allen who said, "Statistics are like a bikini. What they show is interesting, but what they hide is crucial." [So] I think there are these statements, and in general, we all can't really disagree with them. But when it comes to those individual moments, the questions are very, very, very difficult to answer. And each situation is slightly different.
Debbie Moloney Wife of bone marrow transplant patient John Moloney
He knows what he should do [regarding the "Do Not Resuscitate" decision]. And I don't know if he's willing to say it. That's what I think is so hard. I think he knows that he needs to say, "No, let me be. Let me be." And it's going to take him a few days to do that. But when we talked afterwards, he understands. I said, "God, we used to talk about this when my mom -- we were going through this every day." This was a big thing for us to even remove the breathing tube for my mother. We five kids and my dad had to make that decision. And it was tough. And we removed the breathing tube and she continued to live for two more years. So [John] knows. He was with me through that whole journey, how hard it is. So I think he just really has to think it through and say, "How much life? What quality do I want?" I said to him, " When you're laying there unconscious, is that the way you want the end of your life to be?" "OK, I'll think about it." That's what he said.
I don't want to force him. I don't want to see him like that. You know? And I don't have a right maybe to say that, but I don't want to see him like that. It's horrible. I saw my mom like that. You blow up; it's horrible.
He knows. I tell him, "Enough. I need some time with you. Even if it's just you laying in the bed, me sitting next to you, watching a show together, at least it's some time. I can't have you constantly so ill from the treatment." So he knows it's time to stop. And I think he realizes that. ...
But you know what? Maybe we can reverse what's happening right now, and get a couple more weeks of good quality time. That's what I'm looking forward to. And I don't think they're going to keep him here. They want to get him up strong and then bring him back home. I know that's their goal, to give us whatever time we can have. ... So I know he's not going to just lay here, lay here, lay here. Once they can get him stable, he'll come home.
What should doctors tell you about the time left?
I want the doctors to tell me if we're done. I want to know. If we don't think he's going to make it to Friday, I think I'd like to know that. I don't feel like anyone can really say, "You have three months." Can somebody really say that? "You have three months." How do they know? So maybe I don't want to hear that because maybe it's not three months. Maybe it's 12 months. ...
But I think when it comes to: "Will it be in a day or two? He's so bad," because then you really do prepare yourself. And I feel like I went through that the last time, when they told me he wasn't going to make it through the night. You start getting yourself ready for this. Family comes. It's a big deal. People want to say goodbye. So I think then you do want to know. But the three, six, 12: No. How can anybody know that? So don't even play games with me.
I don't know if [the bone marrow transplant doctors] treat John different than other patients, but I think this team of doctors knows how John is and they try to talk to him positively because they know that's how he wants to hear positiveness. And they don't dwell too much on the downside. So when we have those meetings like the Dr. [Adriana] Malone [a member of the Bone Marrow Transplant Unit] meeting, it's like a punch. It's a punch. And I know it's hard for them. I can see that when the doctors are telling us this stuff ... because they know that they are punching John. That's what they're doing. They're giving him a punch. They're knocking him back. And I know it's hard on them. I can see it. I know these people. It's been a year of a relationship with them. Each one of them, we've talked to and know, and they know us. We walk in there, everybody knows our name. I know how they feel about us, and I know how they are treading with John.
Sherley Schwartz Daughter of 86-year-old Marthe Laureville, who has dementia and is on a ventilator
For my mom ... I'll go for it to the last minute and do everything. And she trusts me more than anyone else. And she just put her heart, her life, everything in my hand, always. So how could I say "No," or decide not to put in the tracheal tube, not to treat her, if they have the possibility? They have the machines. They have everything. Help her out. I know that she's not going to live forever. We live and then the end is there. But [for] each person, death comes at a particular time, and I don't think we should hasten it and shorten it if we can help.
We suffer through life, and if she really wants [to not let go], I think she should go through it. And if there is a stage that, if we reach it, then I'll feel it. It's like a temperature. It's like you transmit the feeling of the person if the person cannot express it. I'll say, "OK, mama. You want to let go?" And then you let go. There is nothing else. We can't prolong it forever.
Nadege Viruet Daughter of 86-year-old Marthe Laureville, who has dementia and is on a ventilator
It’s going to be very hard to bring her back to her pre-hospitalization level, which was not the greatest, but she was able to sit and walk around and what have you. I don’t think this will happen even if she comes out of the hospital for a long time.
... But trying to sustain that life, if she does, that’s very good. I’m happy. I’ll be there to enjoy every minute of it with her. But if it changes, I feel that one should realize it had changed. I was for it when they said they were going to orally intubate her because … you have to give it a chance, to see if it will turn around. We were all for it. But if it changes to the worse and there is no more time to buy, I don’t know what you’re buying. And that’s where my opinion differs. ... I have a very soft heart. I love my mom very much. But it’s mercy. It’s humanity, to me.
Francisco Galarza Son of Blanca Galarza, a patient who might be extubated
There's a chance she can come back from this, but in her advanced age and all the other medical issues she's got going on, I have to deal with the fact I might be in a position to have to contribute to her passing away. I know I'll be able to make the right decision when it comes. I'm just going to have to deal with it after the fact.
... She had a kidney transplant in December. She was on dialysis for eight years. And for the last two, all I kept hearing is, "I can't do this anymore." "I don't want to do this anymore." She started becoming a little more aware and coming out of it Saturday morning. She had already had like three or four dialysis sessions while she was asleep. So I was trying to figure out a way to break it to her slowly, let her know that she is on dialysis and possibly on dialysis for the remainder. But my plan fell apart when the nurse -- was no fault of hers -- just came, and I did ask her to let me know when things are going on. She came and she said dialysis unit will be here in half hour. My mom doesn't speak too much English, but she's fully aware of the word dialysis. She's fully aware of "here in half hour." And that was immediately a concern for me, because here she is, waking up for the first time in quite a while, and the first look on her face is -- I don't want to say resignation, but she was looking sad. ...
But you'll do what she needs you to do?
Absolutely. Within reason, I might listen to what other people have to say, but at the end of the day I'm going to have to carry this the rest of my life. It'll be my decision.
The Cost Issue
Eileen Scigliano, M.D. Mount Sinai Hospital, Bone Marrow Transplant Unit
There's a national conversation about cost of care and futile treatments at the end of life. But it's much more complicated. Your view?
I think, because we're dealing with a very different population of patients, our view might be different because we're not dealing with elderly people. We're dealing with patients who have life-threatening, potentially-curable illnesses -- for which this treatment which can cause significant complications and prolonged hospitalizations and lots of hospital cost -- has a real potential benefit to save their lives and to prolong their lives in a meaningful way. And when we make these day-to-day decisions, we don't think about the cost of that procedure because we're weighing it against the cost of this patient's life, which is inestimable. So that doesn't really enter into our equation when we're making a decision about having a patient undergo a transplant.
We will have to struggle, for example, in this particular situation with the insurance companies if we were to try and get insurance approval for a second transplant. That would probably be a fight, because the statistics are not great. So that would be our only interface with the cost of it, having to deal with the insurance company and make an argument and make appeals for why this might be a benefit to this patient. We're transplanting relatively young patients who have, we think, a good chance of surviving. And the cost doesn't enter into it.
So in your mind, you're extending life, not prolonging death?
Right. We're trying to prolong their life. We're not just simply delaying their death. We're hoping to cure their diseases. They have the potential benefit of being cured and leading normal lives, not just delaying their death but really to lead normal lives.
And I guess again the real struggle is: How do you weigh what the chances of cure are? There's the potential for cure, but in that individual patient, is 50 percent chance? Is it a 20 percent? And who gets to decide what the value of that person's life is? Is it worth -- whatever "worth" means. And it has a monetary worth, because the procedure costs a lot of money and the hospitalization and so forth. I don't know how or who gets to decide that, or how what is the most appropriate way to decide that.
David Nierman, M.D. Mount Sinai Hospital, Queens, Chief Medical Officer and Vice-President, Medical Affairs
The new population of chronically critically ill?
There's a population of patients that in America are growing, that for the most part don't exist anywhere else on earth. There are very few other countries that either have the cultural belief system or the health care system or the finances to create these patients, but here in America we're doing a great job. And these are people that come to the intensive care unit, that as part of their illness, they require mechanical ventilation, and despite doing everything possible to improve them quickly, they do not improve; they don't die but they stay suspended in limbo. And after the next seven, 10, 14 days, they're still on a ventilator, and they need a tracheotomy done in order to continue to ventilate them. Those patients, we have labeled chronically critically ill. And that population of patients is growing.
It is the worst outcome, as far as I'm concerned, of critical illness. The best thing clearly is to improve quickly and to leave. Although terrible, the second best thing is to die but to die quickly. But the worst thing is to remain in this state of suspended animation, because that can go on for months to years. And what's so sad about it is that the better we get at practicing critical care, the more of these patients we are creating.
And it's growing as a direct result, paradoxically, of our ability to do a better job in the intensive care unit. Because 25 years ago or 30 years ago, all these patients would have died. But since we've gotten very good at all the other stuff we do they're not dying. But they're also not getting better. And they remain in this state of suspended animation for days and for weeks and for months and sometimes for years. And again, it's an American thing -- the result of the American health care system, the cultural belief system in America, and quite honestly, the ability of American health care to pay for it.
So in America we are spending hundreds of millions of dollars a year in taking care of this particular population of patients. And these are patients that have been in intensive care units; they were on ventilators; they still require mechanical ventilators. Most of them leave the intensive care unit and go to live either in the hospital somewhere else or out of hospital. They are still very ill. They're on the ventilator. Many require dialysis. And their quality of life and level of function is terrible. If you look at value as quality divided by cost, we spend a huge amount of money on these patients, yet the quality of what we're accomplishing is very suspect. And it really makes you wonder about the value of what we're doing. These patients, some of them do get better, but the vast majority do not. And if you're over 75 years old and you are trapped on a ventilator after an ICU stay, at one year, as far as we know, still the expected death rate is 100 percent.
So we spend a lot of money on these patients. Their survival and their outcomes is extremely poor. And it raises real philosophical questions about whether or not this is a wise thing to do.
Judith Nelson, M.D. Mount Sinai Hospital, Medical Intensive Care Unit
The broken survivor population is increasing. What are the consequences for society?
This is a serious national health problem. The estimates are that at any given time, 100,000 people are chronically critically ill, on ventilators, in various kinds of facilities -- respiratory care units; some of them stay in ICUs; long-term acute care hospitals -- all over the country. Most of them are older adults. And so there will be more and more as the population continues to age and as we continue to offer more aggressive treatments to older adults. It's estimated that the cost of caring for these people is in the $20 to $25 billion range, annually.
This is a most serious problem. And it is really interesting that it has not gotten a lot of attention. And it needs to get a lot more attention, both from policy makers but also from scientists, from clinicians in the intensive care units, who need to understand it very, very clearly and explain it to patients and families if that's appropriate. Our house staff need to be trained about it. We need to know where our people are going after we do what we do in the ICU. That's one of the most important ways that we can measure the value of what we're doing in the ICU.
Jerome Groopman, M.D. Professor of Medicine, Harvard University
I think there are many degrees of separation when you get at Medicare data on expenditures at end of life and so on, and what is very glibly termed waste -- "30 percent of all care is waste." That's the new mantra, which comes to some degree from the Dartmouth study [PDF], which I've read -- one of the few people who talks about it, outside of the health care economists and the experts, who's a clinician, who's looked at it. 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.
I think instead of having this rigid and assertive discourse, that it's a waste to treat people at this point in life and so on, we should really be encouraging conversation and interaction and a move towards a joint understanding of what are the goals of the person who's ill. How does his or her family and social setting fit into that; what does he understand or she understand about quality of life at that point? -- and having that kind of deep, intense and, frankly, ongoing conversation.
It's not like, OK, I want to do everything, so then you switch to everything; or I want nothing, and you switch to nothing, because there's a great deal of research that shows that people's preferences and thoughts at this point in life fluctuate a great deal and can vary if they're in terrible pain or depressed that day, and then if they're visited by a grandchild and there's a prospect that they might go home, they want to do more. It's not this static kind of situation. It's very dynamic. It's very personal. It's very intense.
I think we need to be cognizant about cost of care and so on, but not in a way that sacrifices true caring and bringing the person to a point where he or she can make a really considered and meaningful choice.
Keren Osman, M.D. Mount Sinai Hospital, Bone Marrow Transplant Unit
There's no question that there are enormous wastes of resources ... in many situations. But of course to say that you're spending the most money at the end of life, it's true you only know that once the life has ended. If the life continues, then is it worth it or isn't it? And there are many, many treatments which prolong life, which are extraordinarily expensive ... many, many very expensive treatments, many expensive medications. ... It costs a lot of money, for various reasons. ... But for each individual -- and America is quite an individualistic society -- those costs are irrelevant. It's their life, and it's the life of their loved ones, or of their child, or whatever it is. And so at that moment, the money is irrelevant in the conversation. It doesn't even enter the conversation in the room with the patient who thinks that their life is about to end, and who sees a glimmer of hope for a possible cure. How can you talk to them about that? I don't know. ...
Most Families Are Unprepared
Scott Lorin, M.D. Mount Sinai Hospital, Medical Intensive Care Unit
Why are patients making decisions rather than a physician?
Historically, physicians used to make these decisions. They used to decide arbitrarily, and the patient essentially did not have autonomy when it came to these decisions, particularly when it came to something such as CPR for a cardiac arrest. But over the last 20 years, the autonomy in making these decisions and this decision making has shifted to the individual patient. Now [it's] the patient who has the capacity, can make these decisions for themselves.
But the patients typically do not have capacity in the intensive care unit, and therefore the law puts the burden of decision-making on the health care proxy or the surrogate. We would like to think that this is shared decision making, but ultimately, at least in New York state, it's not really shared decision making. We're trying to make a decision that the patient would want, in a framework that the patient would want, but many times we don't know, in which case the burden is then put on the health care decision maker to guide us in these decisions.
Most family members are completely unprepared to make decisions. The single reason is they have no context. Since we do this every day, we have context and can get a sense of whether a patient's going to live or die in the intensive care unit. But for a family member who's never been in an intensive care unit before, it's very difficult for them to make decisions.
I think ultimately the overarching theme and emotion that's being felt is guilt. Ultimately, what they don't want to do is make the wrong decision, because if they make the wrong decision, there will be a guilty feeling for the rest of their lives, in which case, typically, they tend to keep prolonging life until the physician is able to tell them that we don't think the patient is going to survive the hospitalization. ...
As a critical care physician, I think as a physician in general, we’re forced to do things that we may not believe in. I have personally performed a tracheotomy on many, many patients who I know are going to die in the upcoming weeks or months or so. But ultimately, the decision doesn’t rest with me. It rests with the family. ...
When you graduate medical school, you say the Hippocratic Oath, primum non [nocere], which means "first do no harm." And you take that to your everyday practice. What we want to do is good for the patient, and avoid harm at all cost. But unfortunately in critical care, that’s impossible to do. With all the sophisticated technology, with all the procedures and interventions that we do, or despite our best intensions, we still may cause harm to the patient -- suffering, pain and ultimately negative consequences -- despite our best intentions there.
Judith Nelson, M.D. Mount Sinai Hospital, Medical Intensive Care Unit
I think that most families facing these decisions really aren't fully informed -- not that anybody is deliberately concealing information from them. But for one thing, people in a crisis situation, in an intensive care unit, a family, it's very hard for people to absorb information. They're very distressed. It's very hard to hear. You could talk at people and not get the message across and not get the information across, so you need to be very careful and skillful about how the information gets communicated. And you need to be very much aware of the emotional background of the people coming into the situation. There's a cognitive channel, and there's an emotional channel. And if you're only tuning into the cognitive channel, you're just missing everything that there is to be seen and heard on the emotional channel.
So I think you really need to be very sensitive and very measured and paced about delivering information. And I think if you do it that way, that over a period of time that varies from patient to patient, family to family, people can get a better sense of what the implications are at different decision points. I don't think that's happening yet most of the time.
So that, for example, somebody who is unable to come off a mechanical ventilator in the ICU, and gets a tracheotomy placed to move the connection of the ventilator to the neck, and then go on for further efforts to take them off the respirator, that at least half of the time are not going to succeed, the research shows that those people don't understand that moment and what it means in terms of the future. Those people believe that, for the most part, that having a tracheotomy is a good thing; that it means that the doctors are going to continue to try to take the patient off the ventilator. And what they don't understand is: That moment when the patient needs that tracheotomy because they haven't come off the ventilator is a very serious prognostic indicator for the future, meaning it tells us that we need to be very, very concerned about what the outcome of this patient is going to be. So that moment really needs to be captured in a extensive communication. And it's not that at that moment I expect or want a family to decide, "Let's not do the tracheotomy." It's just that I want them to know then that the risks are high, so that when, two to three weeks later, things are not going well, they will at least feel that they were alerted that things might not go well, as opposed to having expectations that were never modulated to be more realistic.
So I think we need to give people that information and the time to absorb the situation as it evolves. Otherwise, the expectations are just dashed in a moment. And that's when the anger and the guilt and the regret are so deep and so intense. And I think we can avoid that to a large extent in the intensive care unit, by anticipating the possible outcomes with the people who have to make the decisions with us. ...
Should families be deciding these things? Is it a well-intended policy gone wrong?
I think that, in trying to give patients and families a voice in their care, which they should have, we ended up saddling them with extraordinarily difficult decisions that burden them and cause them to struggle with decision making without information, when they're in an emotional crisis. And so I think we as clinicians need to accept our responsibility here. And we cannot escape by laying out a menu of options to people who are really not in a position to choose. We have to explain these things in a way. And there are certain decisions that are simply medical decisions, that relate to the burdens and benefits of therapy. And that's my professional responsibility. It's not up to anybody to make a decision that a treatment that is more harmful than is helpful should be given. That's not allowed. And so I have to look at every situation and take those responsibilities on myself, and to share the ones that are less clear, where we all need to weigh burdens and benefits, and to be sure that all the decisions are informed by the values and goals of this individual, and so to listen to those families. So I think we have burdened people with decision making that they experience as being very distressing at times.
And again, this is very variable. There's research about this. There's research about the variation in families' wishes to receive recommendations from physicians about medical decision making, about the extent to which they want to play a role in the decision-making, and of course there's great international variation in this. There are countries in which the doctors still, by and large, make all of the decisions. And we have the other extreme. And I think we need to find a better resolution of the competing concerns here: The concern to make sure that patients get to exercise their autonomy; and the concerns that patients and their families don't get burdened with medical decisions that they can't possibly be in a position to make, and that only cause them distress.
Keren Osman, M.D. Mount Sinai Hospital, Bone Marrow Transplant Unit
Do you think families are ever prepared to make those decisions?
No. 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, because [they] can't really imagine what the scenario is going to be.
And so that's what I was saying, that we all know that death is a certainty for all of us; but how is it going to happen? We don't know. So I think when you get very sick and you're in the hospital, and you're trying to get better, ... even in the ideal family where all these things have been discussed, you can't imagine every single scenario. ...
So I think there are so many interventions that medicine can offer, little things. I don't know if they really end up changing the eventual outcome. We can put in a pacemaker. We can add antibiotics. We can add a third antibiotic. We can add this medication; we can add that medication. And that's, I think, where it can get really fuzzy for families. Well, should I choose a pacemaker? Shouldn't I choose a pacemaker?
And when you're so distressed and so upset about your family member, how can you be asked to make a decision about that little thing, when what really all you want is [to] do everything you can to make them better? And what you really need is not a conversation about that small intervention, but you need a conversation about what the big picture is.
I think the problem is that sometimes, though, even people in medicine are not sure what the big picture is. That's where the confusion happens. Well, maybe the pacemaker will save her life, and maybe things will turn around. Somebody has a terrible stroke, and then the heart goes, and they get an infection. So what's the right thing to do? And do we know that they won't recover from the struggle? We know with some degree of statistical inference that the chances are this. So it's hard to say. I think those situations are very hard. They're hard on everybody.