Interview Keren Osman, M.D.

Keren Osman, M.D.

She is an oncologist and hematologist with the Bone Marrow Transplant Unit at the Mount Sinai Medical Center, and is also an assistant professor at the Mount Sinai School of Medicine. This is the edited transcript of interviews conducted on Nov. 21, 2009, and March 7, 2010.

When and why did you become a doctor?

... There are so many different reasons. I think probably the real reason that I became a doctor is because I grew up in a home where I had a sick father. ... I met his doctors, and I think I was very influenced by them and kind of thought that they were heroes. I also think that I was very scared as a child about why my father was so sick, and probably I wanted to have some control over that knowledge. Then as I matured and became older, I wanted to do something in which I could help people. ... There's no denying, I think, that the truth is that when you choose a profession like me, you're probably also interested in doing something in the society that has some meaning in society. ...

[You've] said the patients are interesting to you. What do you mean?

Well, the patients are kind of like -- they're heroes. They put up with so much. When I look at them and what they're willing to endure, I have enormous admiration for them. ... Ultimately it becomes a very intimate relationship, because what they're facing is much more challenging than a hypertension or the average kind of problem, so you have to rise to that level of expectation. ...

By the time a patient has come for a bone marrow transplant, have they exhausted other options? Are you their last option, generally?

... It depends. Sometimes patients come because we are their last option, because they've tried other chemotherapies which should have cured their disease but didn't. … But sometimes transplant is the best first option, because they have a disease for which the best cure is when you do transplant early. Then they're meeting us in a different situation. …

Explain what a bone marrow transplant is, in simple terms.

This is the way I explain to the patients. In really simple terms, a bone marrow transplant is not really necessarily a transplant the way you think of a heart transplant or a liver transplant, where you take out a sick organ and you put in a healthy organ. It is, in a way, like that, especially if the problem is that in your bone marrow, which is the factory that produces your blood cells, there is a problem, and that problem is that the bone marrow is producing leukemia or producing lymphoma cells or producing multiple myeloma cells. ...

“People always talk about doctors taking away hope. But I don't really know what that means, because sometimes there really is no more hope.”

A bone marrow transplant, when we talk about an allogeneic bone marrow transplant, … that's when you give chemotherapy and try to really replace the patient's marrow, which is their blood-forming organs as well as their immune system, with the stem cells or bone marrow and immune cells from the donor. And the way that we achieve that is really just by giving chemotherapy -- not necessarily high-dose chemotherapy -- and maybe some radiation, and maybe some medication to suppress the immune system. Then we infuse the marrow from the donor into the blood, and magically, the stem cells from the donor, kind of like homing pigeons, know to go through the blood, set up shop in the marrow, and begin to make normal, healthy blood cells and immune cells. ...

The idea is to replace your immune system, because your immune system has somehow become tolerant of your cancer, so your immune system doesn't recognize your cancer cells as abnormal anymore. Now we want the donor cells to recognize your cancer cells as abnormal. ... The benefit of getting an allogeneic stem cell transplant is what we call graft-versus-leukemia effect, or graft-versus-tumor effect, in that the immune system can recognize your tumor cells as abnormal and eliminate them. ...

It does sound magical.

I know. It does sound magical. (Laughs.) But it's not magic. ...

Is it considered cutting-edge? Years ago, would these patients have died?

Stem cell transplantation has been around for sometime. I think the very first experience ever with stem cell transplantation was probably in the late '50s, and that was of course done in mice. And soon thereafter, there was some experiment with identical twins where one had leukemia, and she got sublethal irradiation and then got the stem cells from her identical twin, and she was able to remain in remission for some period of time, although she did end up dying. That was the proof of principle that something like this could work.

The ability to collect peripheral blood stem cells and the development of the technology of stem cell transplantation really happened in the '80s. So in the history of medicine, it is rather new, and it is changing so much. It's been around 30 years, and even in the last 10 years, just in the period since I graduated from my fellowship training, there have been so many advances in terms of what kinds of patients we can transplant. ...

Does it complicate the decisions around who should get transplants?

Yes. Now that it's easier to do transplants, it does complicate the decision, not only because we have a wider variety of patients who can be transplanted; we also have a wider variety of sources of bone marrow stem cells. ... So it certainly increased the possibilities, but it also increases the complications, and that's because there are a lot of things that we're still learning. And just because somebody is able to get a transplant doesn't always mean that that's the right decision for them.

How do you figure that out?

... I don't know that I could answer that simply. Sometimes the decision is that when a transplant is a possibility but not the best option, that's sometimes because there is no better option. Then I think that there can be some dissent within the medical community about whether a transplant is really the right thing to do at that time. Sometimes it's an experimental treatment for that disease or hasn't been proved well in that disease because it's too new a treatment for that disease, and so the case series -- the published information on that -- is very small.

Then it's a complicated and very big question that we discuss among ourselves: Is this patient really eligible for a transplant? Will they survive? Will they do well? Will the transplant really help them, or will it make them more sick? Is there something else we could offer them? And if there really is nothing else, then the decision is very complicated, both for us and then for the patient as well.

Sometimes the patients come with a preconceived notion. They were referred for transplant by another physician, and then they come demanding transplant, wanting a transplant. And we, of course, are influenced by that. That's something that they want, so can we do that for them? Do they understand what all the risks are? Do they understand how sick they might get or the fact that it may not help them at all? And those are conversations that we need to have with each other and sometimes with our colleagues outside of the institution, and sometimes with the patient several times over, to make sure that they understand that it is something that is not guaranteed to work but that we're willing to try with them, as long as they understand what the risks are. ...

What do patients generally want to know?

... There are patients who don't want to know anything. They just want to know that you're going to do everything you can to make them better. They're not interested in asking too many questions. Maybe they're terrified. Maybe they feel that you're going to speak in medical jargon and they're not going to understand what you have to tell them anyway. Or maybe they can't process all that, and they'd rather the decision be left in your hands, which is, I think, OK.

Then there are patients who want to know everything down to the dosage of chemotherapy and how many hours each infusion is going to be. ...

How much they want to know changes throughout the treatment. Sometimes patients want to know everything in the beginning, and as they get ill, they want to know less; and sometimes the other way around. Sometimes it's so new and so difficult to process that they don't ask a lot in the beginning, and then once they become more comfortable, then they will ask more. I think we have an obligation to tell patients, at least to have them understand what it is that is our concern and what it is that we're trying to do for them.

They can't comprehend what the risks will mean. How do you inform patients without terrorizing them? It's theoretical, except for second transplants.

... We have an obligation to make sure that our patients understand what the risks are. It's not easy to talk about everything, because not everything is going to happen, so that is terrifying to hear all of that. Probably if I heard everything, I'd run out of the room and say, "No, thank you."

I think we have to tell them as much as we can to make sure that they understand the really high-risk portions and explain that we don't think all of it will happen. We will work very hard to make sure that that won't happen, but there are some things that we'll not be able to prevent. ...

Often patients will ask: "Well, what if it doesn't work? What if the transplant doesn't work?" So when they ask me that, I ask usually: "What do you mean, 'not work'? Do you mean that the cancer will come back, or do you mean 'doesn't work' like you never engraft?" And then it's time to answer the questions in a much more specific way, to that patient's particular situation. ...

Do people express being afraid? Do they ask, "Am I going to die?"

No. No. No. Nobody asks that. Sometimes we tell them that it could happen. ... I can't remember the last time a patient asked me whether they were going to die. I'm sure it goes through everybody's mind, but to specifically ask that in that way, I can't remember the last time somebody asked me that. I have gotten to the point with patients where they feel that they're dying, and then they tell me also, in a very indirect way, "I feel that my body is rotting around me"; "I feel that I can't do this anymore"; or, "I feel like I'm on my way to the grave," or "I'm on my way to the other side." But very rarely have I heard the words from a patient's mouth, "I'm going to die," or, "Am I going to die?," or, "I'm scared of death." The word is, like, taboo.

What do you make of that?

I've thought about that a lot. ... I don't know for sure. I can't answer for the patients. But I think maybe sometimes saying the word makes patients feel like that will become a reality. ... But I think everybody does that. People don't like to say "death." They say "passed away." They say "gone to a better place." ...

How often does a potential patient say no to treatment?

Very rarely do patients say no to treatment. It has happened that patients say: "I don't want to do that. That sounds too scary." ...

But most people grab the chance if it's offered?

Most people grab the chance. Most people would like any chance they can have to keep going, even understanding how risky it is. ...

Chances change from first to second transplant? What happens?

So if the first transplant doesn't work, occasionally it's possible to get a second transplant. That's almost never a good situation, but it's not an impossible situation. That is one in which the decision has to be even more carefully considered. How did the patient fare in the first transplant? What was the length of time until the relapse? And what kind of donor do we have for the second transplant? And often in that situation, that is the patient's really, truly last hope. ...

But most people will go for it?

Many people will go for it. Some people won't. When they decide that they want a second transplant, they're still hoping for a cure. As small as that chance is, they still hope that they can be that small percent. ...

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 as 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 cruicial. [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.

What guides you when you're in it? What are your points of reference? You have to do that as a doctor.

... In those moments, a lot of what guides you are, of course, the standards of care, what are appropriate standards of care. You look to your colleagues; you know the literature. You know what will work, what won't work.

But the moments of saying, "That's enough," or, "We've reached a point where we're really not going to be able to go back, and it's clear to me that the patient is dying," those are very hard to say exactly. But you're guided by your experience, by what you know, what you've seen many, many, many, many times over. ...

Can you predict for whom [a transplant] will be a success?

We can predict reasonably well in the young patients and in patients [who] fall into the category where it's well recommended. For the others, we can't predict how well it's going to go. ...

In many cases, is it really a cure? They get their life back?

Right.

And that's different from remission?

Remission just means that the disease isn't there. Cure is something that's like taboo to say among some oncologists. People don't like to say that, "cure," because it's hard to say, to be sure that it really will never come back. But the longer you are out from transplant with the disease not coming back, the more likely it is that it's not going to. ... It's the best chance at cure. ...

What's considered old for a transplant? What's age-inappropriate for a transplant?

The literature on transplant tends to be published up until the age of 70. There's very little published over the age of 70, which isn't to say that there aren't patients who are over 70 who don't get transplants, but the literature tends to be up until that age. The reason is not because of the age only, but because of the number of possible what we call comorbidities, other illnesses that can happen to patients by that time, which is that they develop high blood pressure, that they will have had a heart attack by then.

So sometimes over-the-age-of-70 patients are in excellent, excellent health. And while they're biologically 70, they are much healthier than their colleague who may be 10 years younger than them. In those cases, you have to consider the individual. ...

How do you figure out what a patient wants and what a spouse may want?

I think it's pretty clear that as a physician, your obligation is to the patient first more than to the family members, the spouses, the children. So I try as hard as I can to really understand what the patient wants, especially if there seems to be a conflict. Sometimes my job is actually to kind of reinterpret what the patient is saying for the family member and say, "Hey, this is what so-and-so is saying, and I think that that's OK," or that that's not OK, or whatever it is.

It doesn't really happen that often that they're very diametrically opposed. There may be subtleties that are somewhat different, and then that's very difficult for me to tease out. And I'm not even sure that it's appropriate for me to get involved in those situations. If there are little subtle differences, if the general idea is the same -- you both want the person to not suffer or not have a hard time or get better -- then that's something that I can get onboard with.

Little things can sometimes happen that are complicated. That is, let's say the patient is in a lot of pain, and the family doesn't want them to get the pain medication because it makes them sleep all the time, so they ask the nurse not to give the pain medication. Then it becomes a little bit more complicated, and then our job is to explain, "This is a lot of pain, and we don't want the patient to have a lot of pain."

Sometimes the patients don't want to take the pain medication because they don't want the family members to be disappointed that they're sleeping all the time. And then sometimes our job is to say, "It's OK," and explain how pain medication works, because maybe the first couple of days that you take it, you sleep all the time, but eventually you become tolerant of that side effect.

So [it's our job to] just to kind of educate [them] a little bit about some things that even the society has some preconceived notions about -- antidepressants, pain medications, whatever it is. ...

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 are people for whom that's the truth. And so I know that death is a 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 OK, 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 is also the relief. The part that's hardest for me is the suffering.

I think the part that's the hardest to watch is when patients are really suffering, and when the families are really suffering, when patients are in pain, when they're enduring really difficult situations and all parts of their body are hurting them or not functioning, when they lose function, when they can't get out of bed, when they can't walk, when psychically they begin to break down because they're just so miserable about what's happening to them and what's happened to their life. That part for me is very, very difficult. ...

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.

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 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. ...

John Moloney [a patient with multiple myeloma who has received two bone marrow transplants] didn't want to hear a word about death. What do you do [in situations like] that?

It's funny. He said to [his wife], "I'm going to be all right, Debbie." So we had to laugh. So in those cases, we don't talk about it that way. If that's not what they want to hear, if that's not how they can function with it, if they don't want to discuss that, I don't push it. I know that even if they don't want to talk about it, they know what's happening. They're living in their bodies. So why? ...

Why ... didn't John want to sign a "Do Not Resuscitate" order [DNR]?

I don't know. He didn't want anybody else to make the decisions for him. He didn't want to give up control. ... He couldn't bring himself to talk about that in that way anymore. ...

It's irrelevant anyway, because he's going to die, whether you intubate him or you don't intubate him. He's going to die. So then the question of how he dies exactly is really more on [his wife] Debbie than on him. He will suffer being on the machine, but she will suffer 10 times more, and he's going to die no matter what. ...

Often the conversations about DNR come very late. Why is that?

I don't really know the answer to that. Maybe the answer is because a bone marrow transplant is, in the same way like a big open heart surgery in that way, ... an attempt to save life and an attempt to cure the disease. So it seems like to have the conversation about DNR in the moment that you're talking about a major lifesaving intervention seems anathema, although it really isn't. But in order to be able to do that, to have the two conversations at the same time, requires a lot of flipping around around cognitive dissonance. ...

To add the DNR conversation early on adds another layer of complexity to something that the patients have a very, very hard time understanding already. What's going to happen? How sick am I going to get? What's going to be? Will you do everything to try to save my life? ...

And it's difficult for the patients to imagine that far in advance what's going to happen, just like it's difficult for me or you to imagine that far in advance how we would feel. Yes, if I was in a car accident, of course I would want you to put me on a respirator and do everything you could do to save my life. But if I had a terminal illness -- what does terminal illness actually mean? And how terminal is terminal? And what can you bounce back from, and what can't you? ...

The last scene with you and John Moloney, what happened after that meeting?

... I don't actually know what happened. I mean, I know that he went to the hospice. I know that he didn't want to be DNR, but his wife felt really strongly that she didn't think he should be put on a respirator, and the hospice was having kind of a funny issue about that. They didn't want to take him in the ambulance if he wasn't DNR, because they were afraid if he [would need] to be intubated in the ambulance. So I just told Debbie: "Debbie, even if they come close to his face with the tube, you don't have to let them put it in. That's OK." She understood that. Then he went there, and I think within 24 or 48 hours he died. I don't know after that what happened.

What would have happened to him without the transplant?

Oh, he would have died a long time before. He didn't die of complications related to the transplant. ... He died of relapsed myeloma. So I think in some ways the transplant prolonged his life. Now, some people may ask: What kind of quality of life did he have? But he did get to go home. He spent some time with his daughters, and he always retained his humor, so I have to believe that he really enjoyed those extra months that he got. And for somebody like John Moloney, it probably is true that he had to reach that point in order to really be able to die, because I don't think he would have been happy giving up, having not tried anything and everything. ...

[Norman Smellie] was near death many times and came back. It happens in your work all the time. ... Doesn't that make it even harder to know [what to do]?

It's extraordinarily difficult to know. And then there are those -- I hate to almost use this word -- but those miraculous recoveries, where you really almost have given up hope yourself, as the doctor, and then you see the patient turn around. And that's a fantastic moment. ...

So when you have those in your head, 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, and it only takes a little bit sometimes to put them over the edge back into the living. ...

What was going on with [Norman's girlfriend] Jima and his sister [Phyllis]? What issues were you trying to sort through in that last crisis?

I had many conversations with Norman myself, so I knew him very, very well. He and I had many conversations, just the two of us, about his prognosis and what would happen and what he wanted, so I felt pretty comfortable that I knew what he wanted. But when he started to get very ill, I could feel that he was getting very tired, and I could feel that he was losing some will to fight. That's when I felt I wasn't sure whether it was OK to let him give up or whether I should try to really push him to fight. Wasn't totally sure what was the right thing to do.

And Jima was with him at every office visit and every day in the hospital, so I knew that she was very intimately connected to what he wanted and was listening to him in the moments even when he was afraid to talk to me or to anybody else in the medical staff. So I trusted very much what she said.

But the complicating thing was that he had assigned his sister as the health care proxy. And his sister loved him very much also. That was the house that he went [to] when he first went home from the hospital, and she cooked for him, and she took care of him. And she wanted very, very badly to do what she thought was right for him and what she thought he would want. So she was in a bit of a pickle because she wanted to do what he asked her to do. I think on some levels, she also believed that Jima was saying the truth, that Norm was getting tired and kept saying, "Let's go to the grave," and "I'm finished with this." Yet she had never heard Norm tell her that he wouldn't want to be on a respirator. In fact, he told her very explicitly that he would, when she was alone with him when he got very ill, and I called her in, and I said, "You need to talk to him," he told her everything. And that's what he told her. I wasn't in the room, but I believe that that's what he told her.

So she was in a conflict between what she thought might be best for him and what she thought he wanted her to do. And that was a very, very tough situation, because what you want for the patient and what the patient wants for themselves don't always meet. And he got so confused that it was impossible to readdress that with him. ...

Even that day, he said he wanted everything, but not the tube.

I know. But then he was so confused, I couldn't really be sure that he could tell me anything that I could believe. And that's when [Phyllis] had to sort of take action. And there was a lot of pressure on her. ...

At one point you had to go in and out and ask. You felt it was almost getting cruel.

That's right, because that's a lot of pressure for Norman. He was going through enough, and to keep badgering him about it when he couldn't give an answer, because his mind wasn't clearly there. And who knows why it wasn't clearly there -- whether it wasn't clearly there because his liver was so sick that he was confused; whether he was getting a lot of pain medication; whether he simply could not make the decision anymore? And at that point it was cruel to keep badgering him about it. It wasn't going to change anything except how we felt about it, and that wasn't fair. That's at least how I felt. I couldn't do that to him anymore. ...

What happened after the family meeting in the MICU [medical intensive care unit]?

So after that family meeting with [Dr.] Judy Nelson, the family decided not to pursue any further aggressive measures with Norman. At that point I think they didn't want him to be in the ICU anymore if they weren't going to do intensive care. So he was transferred to a regular floor, to a room where his family could be with him. And then I guess shortly thereafter he died, probably about maybe 12 or 24 hours after he was transferred to a regular room, surrounded by his sister and Jima and the other members of his family. ...

Your experience with Norman Smellie's death and Dr. Nelson's, they're completely different experiences.

And that is why she was so much better able to do what she did than I would have been able to do it, because she had that clarity and the distance to be able to kind of put it all together, whereas I was so involved with his family and so involved with him. I wish I had that clarity, but I simply didn't at that moment. And that's just because I'm human. I'm not a machine. Or maybe I'm making an excuse for myself, and I wish I could have done that. But I simply didn't have it in me at that moment.

So in a way, it was kind of great that she was able to summarize it in the way that she did, because it helped him, helped his family a lot, and sort of took some of the burden off of them. And I guess, if you want to talk about a concept of a good death, at least everybody was able to come to the same place together. So her perspective and her being not in it for years with him sort of helped in that way. ...

If he hadn't had a transplant?

I don't know the answer with Norman, because he died of graft-versus-host disease [GVHD]. He had a terrible leukemia which had evolved from myelodysplastic syndrome. So I'm not sure that the transplant prolonged his life, but I'm not sure that he would have lived much longer without it. ...

We fixate on these documents [like DNR and health care proxy]. Is it an illusion of control over what we're so powerless to control?

I don't know if that's what it is. There's something about the documents, of course, that has to do with the law. We don't have euthanasia in this country, and we don't believe that doctors are allowed to make those decisions for patients, so we ask the patients to make the decisions themselves. That's OK.

But part of the reason that we have those documents is because of those legal things, so that when there are situations that are conflictual like that, you have a document that says this is what the patient wanted, or this is what the health care proxy wanted. But the verbal part of that -- in other words, that the patient doesn't have to sign, and that the family doesn't have to sign; that you can just say that you heard them and that you spoke to them about it -- saves them that layer of paper.

So I always use the verbal one because I don't want to make them feel that they signed a paper about something that's so difficult to talk about.

And the refusal to sign it may indeed be about an illusion of control. But the papers are probably a little bit also about the fear of control or the fear of the reality. So [doctors] say: "We are not in control of that. You are in control of that." We recuse ourselves of that control. We are afraid of having that control. And the truth is that we're not really in control of it, are we?

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 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 then they get an infection. So what's the right thing to do? And so 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.

How did the trajectory of Norman's death change by not being intubated? ... If he had been intubated, how would it have changed his death? Or would it have?

Well, it would have prolonged the process of dying for Norman. That's probably what it would have done. It wouldn't have changed the fact that he was going to die. He would have died over a much longer period of time, unrecognizable almost to his family and attached to a lot of sophisticated machines. So that's probably how it would have changed. His family was quite accepting of the fact that that was going to happen. ...

[Was his death] painful for you? Do you feel guilty, responsible?

Of course. We recommended the transplant to Norman. We knew it was his only chance to be possibly cured of the myelodysplastic syndrome. He responded to one medication, but he was no longer responding to any other medications. In his case, the transplant really was a last resort. He could have gone another way and said, "Well, I wouldn't have the transplant, and I'll just get transfusions and supportive care."

So 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 he died better or that we added to his quality of life at all. So of course there's some guilt. We did that to him. I didn't want that for him. ...

He was a nurse?

He was a PA, a physician's assistant.

So he knew more about the risks than others?

I'm not sure that he really knew more, because he didn't really work in transplant. And also I think they go through some kind of suspension of disbelief. Do you know what I mean? When it's you or your family member, you think, well, those terrible things won't happen to me. You have to believe that. Otherwise you can't go through it. ...

Yes, I was able to have very high-level, intelligent conversations with him about it, but I don't know how self-reflective he was about all that. ...

There is a romanticized almost myth of a good death. What difference does it really make, or to whom?

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. So there are things that make you feel that the person died in a comfortable way, and then you hold that memory. But I don't know that the person who's going through it -- who knows?

Are you surprised [by] what people will endure in order to live?

No, I'm not surprised at all. I'm a daughter of immigrants and a granddaughter of Holocaust survivors, and having heard those stories my entire life, what people will do to survive is unbelievable. You couldn't make it up. So in the face of war, in the face of starvation, that my grandfather told stories that he would lie on the dead bodies to keep warm in Russia during the war, that the nurses were stealing the medicines from the hospitals in Poland during the war to take to their own families, what people will do in extreme situations to survive, you can tell incredible stories.

And so what our patients endure in a relatively kind setting, with support, with the thought in their mind that they will get over this, that they will get to the other side, just like people who walk through the desert for days as refugees believe that they will get to that other side -- I am not surprised at all by what people are willing to endure and how much they're willing to go through. ...

Moving from doing everything to save your patients to the point where there are no more options must not be easy.

I think we are an extraordinarily aggressive group of physicians [in the transplant unit]. 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. ...

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. But sometimes you fight to the bitter end and you still lose. ...

... Where is the line between offering comfort and not being misleading? It's tricky.

It's interesting, because people always talk about doctors taking away hope. But I don't really know what that means, because sometimes there really is no more hope, unless you're talking about hope for something else. But sometimes the best thing you can do is to help the patient and the family accept the reality of what's happening and not to offer hope, because what is the hope for at that point? ...

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 that's the difference between being in the situation and being out of it, because sometimes when you're not in it, you have a little bit more clarity about what's happening. ...

How do you figure out what your patient needs up against your own needs?

You don't ever know. I don't think you know. Just like with your husband or your mother, you don't really know what's yours and what's theirs. You go based on some kind of intuition, I guess. I think you have to work really hard to make sure that whatever it is that you need isn't taking precedence over what they need, because you're really there for them. They're not there for you.

How do you know you're not convincing yourself that they're doing well and that treatment will be fine?

Well, I don't know. That's some kind of epistemological question: ... How do I know what I know? But you have to look at the hard data. You have to be extremely firm with yourself about the reality. And you have to be kind of almost on the brink of paranoid. You always have to worry that you're missing something that's bad. You can never just sit there and be complacent and say, "Oh, he looks well so he must be well." You're always looking at the numbers. You're always measuring all these things behind the scenes that maybe the patient doesn't even realize that you're measuring. ...

And I can tell you, for example, with John Moloney, that day when he had the high calcium and he had to come in to the emergency room, that day, he just was not feeling right. There was nothing specific -- was just not right. And it went through my mind that day: There's something about him that's not right. I wonder if I should just put him in the hospital, because I knew. I knew, knew, deep inside me, that there was something wrong. But there was no evidence for putting him in the hospital at that moment, so I decided not to, because I didn't want him to spend another night in the hospital [if] he didn't need to be in the hospital. And wouldn't you know, he was hypercalcemic that night, and he had to come to the emergency room. ...

But sometimes it's something as subtle as that, as just not being right. And how scary and ridiculous is that? You can never really say to the patients, "If you just don't feel right," because when do they ever feel right, especially after transplant? They never feel right. So it's instinct, and sometimes you're wrong and sometimes you're right, and you have to be very careful about that. And you really beat yourself up a lot when you're wrong. ...

Do you feel a tension in your work with the concern over health care dollars? ... Outcomes versus investment. ... Costs of treatment. Bone marrow transplants, I assume, are very expensive. ... Do you ever think about that? Is it worth the investment? ...

The answer to that question is multilayered. One answer to it is, I don't give a damn about what anything costs. I don't concern myself with that in the least. I don't know what things cost, and on one level, I believe that that shouldn't be how I choose medicines or treatments for my patients. Whether it costs $5 or $50,000, whichever one I believe is best, and if the best one is the $5 one or the best one is the $50,000 one, I don't care -- on one level.

I think it's problematic when doctors begin to practice medicine based on [financial concerns], because then there become all kinds of layers of justifications, which are slightly worrisome to me in terms of, if your job is to make sure that you choose the best thing for your patient in that moment, and that's what the patient is asking you to do, you shouldn't have also in your mind money as a consideration.

However, I do live in this world and not in some fake bubble, so of course it concerns me that those things cost a lot of money. I don't really know who's paying for those things, but it bothers me that we have a system in which somebody can have several bone marrow transplants or several liver transplants, and yet there are children who can't be immunized, or there isn't enough shelter to house people, or there aren't effective ways to get preventive care to people who need it; that there's major disparities in the way care is delivered among races; and that people who have money get more and get better care than people who don't have money; and people who are black or obese or don't speak the language don't get good care. ...

But is that directly tied to the cost of a bone marrow transplant? I'm not completely sure. ... I never want to practice my medicine based on "This is too expensive for my patient," because I believe that what makes it expensive may be the profit of the drug companies. I think it's much more complex than that, and I don't think my role should be to save money for the hospital or the government or something like that, because there are many things that people spend money on that I don't think they should be spending money on. So I can't really function that way. ....

[There is a lot of debate about all of the money spent on fruitless treatments at the end of life? Talk about that.]

... You can stand there ... and say it's ridiculous to spend $20,000 on somebody's medication, but it's not ridiculous to give a $5 billion bonus to somebody on [Wall Street]. Money is a big problem. But equitable distribution of money is a much bigger problem than health care, much bigger. Enormous. ...

Cost of care doesn’t answer the complicated human issues that you face every day. ...

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. ...

Have your conversations with patients about death changed over time? Did you begin where you are now?

... I think my conversations with patients have evolved, also because over time I've become more comfortable accepting that concept. And I think maybe that's part of getting older; maybe that's part of being in this job for a longer time. It used to make me more upset, viscerally more upset, so that when the patients would do badly, I would do badly. I would get so sad and I would get so bent out of shape that I couldn't sort of handle it myself. So I think I have matured in that way. ...

Talk about death in America, ... our expectations of medicine, your thoughts?

... I think that Americans have a lot of trouble with death. It's not easily accepted as part of life here like it may be in some other places. You can see the evidence of that in [why] the Terri Schiavo story became so huge, and of course all the discussion surrounding abortion, and what is the definition of life and what is death, and then all this stuff on television about how to eat these antioxidants or eat those low-fat foods, or this prolongs your life; fiber prolongs your life; fiber shortens your life; antioxidants prolong your life.

There's an obsession in American culture with youth, and that has to be something about death, doesn't it? And there are all these extreme shows on television, Trauma, 911, and reality TV about doctors and about saving lives and going to the brink of death and coming back and miracles. And so there's a lot of miraculous or magical thinking about death.

I think we are a culture that has a lot of trouble accepting the fact that that is part of life. It's interesting, because it's sort of speaking out of two sides of our mouth. On one hand we want to talk about controlling health care costs, but on the other hand, nobody really wants to face death or talk about it. And that's a problem. Until we are able to talk about that in a real way, then these struggles will continue, and the piles of paper that we've spoken about will continue to pile up. ...

Most Americans say they want to die at home, ... but the vast majority of us will die in a hospital, many in an ICU. What drives that?

I think what drives it is, on all sides, the inability to really talk about when the end is coming and what people really want. ... Medicine can do many things, but of course it has its limits. We all need to be able to accept that, both us physicians and the patients. I think that the reason that people end up on machines is sort of everybody's fault really, because patients can't say what they really want, but doctors also have a hard time saying, "This is really what it's going to be like if we keep going this way." They get bogged down in the minutiae of the pacemaker or the other medication or the antibiotic. ...

Did you ever tell Norm Smellie that he was dying?

I never told him that he was dying. I told him that if he was tired it was OK to stop, which was about as close as I got. If he'd had enough, we didn't have to do any more. But I never told him he was dying. I tried to understand whether he thought he was dying, and I tried to let him have that moment where he could release himself from the obligation of fighting if he didn't want to keep fighting. ...

I don't know that I ever would have told him. I don't know that that's my place to tell him that, unless he was to ask me. And even then, I'm not sure that I would have been able to say yes. ...

I do remember a patient who looked deep into my eyes and said, "Doctor, I want to die." And my heart broke in a thousand pieces. I couldn't take it. I had to leave her room. ... That was a very terrible moment, because at that moment, all the things we just spoke about, about guilt and "I did that to her; we gave her the transplant; we made her suffer so much." ... But that's only happened once in my life. But that was a very, very difficult moment. ...

Do you think it matters that you didn't?

For Norman, I don't think it matters that I never told him. Maybe in another patient I could have imagined that it would matter, but not for him. ... I don't think so, but maybe I comfort myself with that thought. I don't think so.

For John Moloney?

I could never have told him that. He would have hit me if he had the strength. And I would have deserved it. He never wanted me to say that to him, ever. He didn't even want his wife to say it to him. ...

Do these conversations [about the end of life] help? ...

You know, the value of the conversation at the end of life is the same as the value of the conversation any other time in life. It's just to feel that there are other people there with you. I don't really know that it has more or less value than any other conversation that you ever have, the conversations you have in bed with your husband in the middle of the night when you're worried about your child's cough, or the conversation that you have when you're so happy about something and you're rehashing a beautiful vacation.

It's that fact that we're all humans and we're in it together, and one of the ways that we connect to each other is by having conversation. ... They don't have any more metaphysical importance than any other conversation that we have, but to really symbolize that just because you're dying doesn't mean the doctor isn't there with you anymore, and doesn't mean that you're alone, because we as humans never want to be alone. So I think that that's what they do. They just keep reaffirming to all of us that we're here together. ... In fact, the conversation is really probably just a symbol of the fact that we're alive. ...

When there is no more treatment to offer, what is that for you and the patient?

I guess there are many ways to define when there's nothing more to do. There's always something that you can do, but you get to the point of nothing more to do, I think, when the "something more" is more harmful than helpful. Usually I take my cue from the patient when that happens. As an example, let's say the leukemia has come back despite, let's say, even two transplants and other treatments. At that point the conversation has to be: "You know, the leukemia is back, and there really are no more treatments that are likely going to work to control the disease or to get rid of the disease. We may be able to control it for a small period of time, but at this point, the side effects of the medication may be worse than just living with this disease. And they may not even prolong your life, because the side effects may actually cause low blood counts or other problems that may actually hasten death." Then the moment comes to really shift the focus, and that really depends on the patient, where they are. Are they in the hospital? Are they at home? What it is they want? Most patients by that time kind of know. It's never a shock. It's just a question of kind of working on how it is that they want those last days to weeks to be.

When you're in treating mode, the shift from treating to saying "enough" --

I think moving from treatments to no more treatments is a very difficult transition for everybody. It's difficult for the patient; it's difficult for the family; it's difficult for the doctor, because the doctor is used to offering treatments, and that's kind of how we're trained, and that's also what we want to be doing. So usually it's clear to us several days before we discuss it with the patient. ...

But just because you're not offering chemotherapy or anti-cancer therapy anymore doesn't mean that you're not offering treatment. You're offering treatment of pain; you're offering treatment of suffering. You can offer all kinds of other treatments to help the patient. They're just maybe not aimed at the disease, but they're aimed at all the other things that are going on. So I think that those are important. ...

But partly the pain of the turn is that everyone knows that something is ending and death is near. It's a dramatic and significant turn.

When we decide to give no more chemotherapy is usually a very big moment, and sometimes patients are not willing to even accept that moment. So often, if that's the case, then they usually die a more difficult death because they're not willing to accept that that's happened.

But planning for that end, if the patient is able to do that, tends to make it a little bit more peaceful for them and makes the family able to accept what's happening. But it's not always possible. ...

It's hard for patients to make that turn when they have defied the odds themselves. ...

Twenty times before. ... I think patients and families, when the patient has been through something very difficult and has come through, and then they're in another very critical moment, it's impossible to believe that it won't be OK, that they won't make it through. And very often families ... say: "He's very strong. Do you remember six years ago, when he had double pneumonia and he was in the ICU and intubated? Look at him now." And they're not really wrong, except that if that's happened three, four times, with each time that it happens, it takes them down a notch, and they're a little bit sicker or a little more debilitated. ... How much can their body really endure? ...

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posted november 10, 2010; updated on november 11, 2010 and november 15, 2010

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