NIH CLINICAL CENTER GRAND ROUNDS
Episode 2010-05
Time: 58:51
Recorded February 3, 2010
Ethics Rounds
Navigating Mismatches in Patient Preference and Staff Expertise
John Lantos, MD
Director, Children's Mercy Bioethics Center
Children's Mercy Hospital, Kansas City, Missouri
ANNOUNCER: Discussing Outstanding Science of the Past, Present and Future - this is NIH Clinical Center Grand Rounds.
(Music establishes, goes under VO)
ANNOUNCER: Greetings and welcome to NIH Clinical Center Grand Rounds, recorded February 3, 2010. Today, we have a special "Ethics Grand Rounds" presentation on the topic, "Navigating Mismatches in Patient Preference and Staff Expertise." Our speaker is Dr. John Lantos, Director of the Children's Mercy Bioethics Center at Children's Mercy Hospital in Kansas City. We take you now to the Lipsett Ampitheater at the NIH Clinical Center in Bethesda, Maryland, where Dr. David Wendler, head of the Unit on Vulnerable Populations at the NIH Clinical Center Department of Bioethics is introducing today's speaker.
WENDLER: Welcome everybody to a nicely chilled, Lipsett Amphitheater. We are anticipating whether we should have everybody do about 20 jumping jacks before we get started. Hopefully the topic will be of sufficient interest to generate enough warmth.
I'm Dave Wendler from the Department of Bioethics. This is Ethics Grand Rounds which we do 4-5 times every year. Basically as a lot of people know there is an ethics consult service in the Clinical Center available to anybody in the clinical center 24-hours a day and the cases we presented at the ethics grand rounds were cases that came to the consult service and ones that I thought are particularly interesting or particularly important issues.
So just a couple of things as background, one, the last one of the spring will be May 19.
So typically we are the first Wednesday of the month. This is a rare exception. So for people to keep track, may 19 will be the last one of the spring. As a reminder, these are real cases, based on real cases that came to us in the consult service. However, for confidentiality purposes, we mask them, changing locations, ages and dates and things. It's a real case but we changed some of it for confidentiality purposes. The thing is to remind people it's an interesting case. It's important but the purpose of presenting here, this isn't supposed to be a post mortem conference. The goal isn't to figure out what to do, it's rather to use this case as a jumping off starting point for the more general issues that I think is an interesting and important one. And so I'll give you a quick sense for what strikes me as the interesting issue here. We'll see how that goes with the discussion. But if you look at over the last 20 years, a lot of literature in bioethics, much of it focuses rightly of course on the interests of clinical care patients and in clinical research on subjects. You get the interests of patients, the interest of subjects.
How to make sure they benefit and minimize risks for them. And you could imagine a world in which -- maybe we could we could a discussion later whether this is better or Not -- how about if you just imagined a world in which robots took care of the interests of subjects and patients so they just delivered care that was just maximizing the good for the patients and the subjects. Maybe in some ways that would be a better world but it's not the world we live in and in this one we have clinicians who are people, and some might be both clinicians and a person. The fact about being a person at least has the theoretical possibility of introducing interests, concerns, rights, obligations, which aren't necessarily focused on the patient but that trace to the fact that the individual providing care is themselves a person who might have interests or claims that sometimes might not completely be consistent with the patient. So this is the question that I think is raised by this case in a certain way and hope you'll see how it's related and I think it's an issue that there is very little work that has been done in the ethics literature on this issue, which is why I wanted to bring it to everybody's attention today.
So I'm just going to give one example of the kind of cases I think raise this issue. A couple of years ago, the ethics committee had a case of a patient who had widely metastatic cancer who is very sick, and everybody agreed who was taking care of him, he had very little time left to live. The question came about whether or not this person should be DNR, whether or not if arrested he should be resuscitated. The patient adamantly wanted to be resuscitated even though he had bony metastasis throughout his chest and giving him chest compressions would more likely hurt them than help him. But the patient still wanted it. Some said to themselves, if this is what the patient wants and he understands the risks, we should do it. Others said no, this patient is putting us in a position where if we have to resuscitate him and have to do chest compressions and have to pound on his chest, we may break his ribs and puncture his lung and we might be the agents that end up killing him. And we shouldn't be in a position where we are having to provide that sort of care for somebody where it probably isn't going to do any good any way. So the question was whether or not it makes sense for the clinicians to be concerned about how this patient – essentially death comes about and them not wanting to be an agent of it.
So, for another example, hopefully maybe we can come back to this discussion, it's not clear how this is connected. To see another case like that. We have Anne Marie Matlock, a nurse manager on 5, who has been at the clinical center for about 10 years and was involved in this case and as I say in the past, we couldn't do ethics grand rounds if we didn't have the willingness and courage of clinicians to come up here and present their cases in front of a really big audience. So thank you for coming.
[APPLAUSE]
MATLOCK: Good afternoon. I was the nurse manager on the medical floor that on behalf of the team, we called the ethics consult for discussion on this particular patient. We're going to go through some background on the patients, some is factual, some is not, again to sort of hide the patient's identity. And then afterwards, if you have any questions or something that we didn't cover, I'll be glad to assist and you as well, two of his primary nurse that is cared for him for over a decade are in the audience. So we'll rely on their support and help if I forget something factual.
This particular patient is a 28-year-old man, he lives locally, and does have a very supportive family. He is college educated and during his last inpatient admission, he was working towards his graduate degree. He was diagnosed as a young child with an inborn immune deficiency. Over the course of his life, he spent accumulatively several years in the hospital treating various infections. He was in a natural history study here at the NIH clinical center for many years and was very well-known to many of the nursing staff, as well as interdisciplinary team. He received clinically indicated treatment, primarily antibiotics and antifungals to treat his infections and was followed for over 15 years at the clinical center. On February 22, 2009, he was admitted for another suspected infection. He was treated on the medical unit for about two weeks with antibiotic and antifungal therapy and on March 9, he was transferred to the intensive care unit because he had a deteriorating stat us that included respiratory distress. He spent 52 days in the intensive care unit on this particular admission. After his condition improved, he did transfer back to the medical unit. He continued with his antibiotic and antifungal treatment while on the medical unit. In May, though, his condition began to worsen again. By the end of May, he had another severe infection despite all the therapies we could provide for him.
The team explained to him that he was likely to develop respiratory distress and possibly need intubation so they talked to him about transferring back to the ICU. He adamantly didn't want to be transferred back to the ICU. However, he didn't not wish to invoke a resuscitate order. So we explained the high likelihood of needing to be resuscitated and intubated and he would need to require that again. He was intubated in his 52 day stay as well. We further let him know that if he needed to be resuscitated on the medical unit, we would have to call a code. The code team would have to come and then he would need to be transferred to the ICU. He continued to decline interdisciplinary recommendation for transfer back to the ICU. The team was concerned that the higher level of observation was needed given his worsening condition, meaning they wanted him to go back to the ICU because it wasn't routinely provided on the medical unit. The nursing staff was changed to provide care with a higher level of acuity. The patient understood that the ICU staff were the experts in providing this kind of treatment and he would require mechanical ventilation, and we would not be able to give that to him on the medical unit. The patient's family as well understood his situation and they preferred he be transferred to the ICU. They did feel the ultimate decision was up to the patient. Despite numerous discussions with the patient and the family, they did support the patient's decision to decline the transfer back to the ICU. That the time, we called in a bioethics consult. We wanted them to discuss the case with us and we wanted to be able to respect the patient's wishes at the same time and be able to provide him the level of care that he needed. The bioethics team determined that the patient was clearly competent to make decisions regarding his care. The patient explained he was very uncomfortable in the ICU, felt more comfortable on the medical unit and he had developed a really good relationship with the nursing staff there. The patient again declined to evoke a do not resuscitate order. We talked to him about several options that we could consider if he did transfer to the ICU, such as having a medical nurse go to the unit and provide care for him every day. But despite all those options we offered, he continued to decline the transfer back to the ICU. So what we did on the unit was we had a modified approach to make sure the patient was safe and that the staff was competent and able to care for the patient. We made sure the patient was close to the nurse's station. We had the patient's mother stay in the room with him. We provided one-on-one nursing care. And we made sure that we communicated back to the ICU team we had a patient that would possibly need to be intubated in the next couple of hours.
Questions that come up in caring for this type of patient – how do we balance the patient's preference to remain on the medical unit with the team's concern that the level of patient care requirements is not aligned with the level of usual care provided by the staff? Is it acceptable to encourage a patient to return to the ICU? Is it acceptable to keep the patient on the medical unit as long as he understands and accepts the risks? Can we force a patient to transfer to the ICU if he refuses to complete a DNR?
I want to point out something that underlies a critical point for those who do bioethics consults. When I first meet somebody and i tell them we do bioconsultation, they assume that that involves cases where somebody is doing something that is really bad or somebody is doing something that is clearly unethical and we are supposed to go in and try to tell them to stop doing bad things and I always respond, we are not bosses or mothers. Everybody has a boss. Most people have a mother. Those are the people who are supposed to tell you to stop doing bad things. We get involved in cases when like this case, everybody is trying to do the right thing. Everybody is working really hard and this is a really hard question about the right thing to do with this guy and basically a question about whether or not it's appropriate for him to stay and us to accept staying on the floor when he is going to get the best care the nurse can give him but he won't be treated by the people who are experts in the kind of care he needs.
I think it's an important question and again, it's one that arises in the context of which everybody is trying to do the right thing. We have somebody to talk to us about that but before we get to that, I just want to stop and see if there are any factual questions for Anne Marie before we let her go. Is there anything about the facts of the case we didn't describe that would be helpful for you?
As a reminder, we stream this on to the web, so if you have a question, if you can get to one of the aisle mics, that allows us to get picked up and for people to hear watching on line. If you can do that, it's better. If not, give me a chance and we'll repeat the question before we get the answer.
QUESTION: Just a quick question. I may have missed something. How clearly was the patient told that if he stayed on the unit despite everybody's best intentions, he would die there if he didn't get care in the ICU?
MATLOCK: As the nurse manager I wasn't in the room during all of those discussions. I don't know whether or not any of the nursing staff that are here were in there. They did make it very clear to him that the path he was heading on with his respiratory distress would most likely mean he would need to be intubated. He had been intubated before. They explained about the breathing tube and explained if he had been in the ICU or had transferred to the ICU, they could do that very smoothly as that is something they would normally do. I don't know that they basically said to him that he would have a chance-- if your question is correct, of dying on the unit per se, but they let him know there would be a delay in normal treatment because you have to call the code team and get the intubation to happen. But I'm not sure of the exact conversation.
So I was involved in this case. I don't think anybody was absolutely certain that he was going to die on the unit. But everybody felt confident the risks to him were higher if he stayed on the unit despite all the best efforts of the team. And that he understood very clearly. That was explained to him many times. He understood it and basically he was willing to accept those risks because he really didn't want to go back to the unit.
Carol, do you have anything to add?
CAROL: I had a conversation with him discussing just that because I tried very hard for a couple of days to get him to go to the unit and he did understand quite clearly that if he did not go, it was his best chance at survival to go, and he still refused.
QUESTION: I have a few questions. I think -- did he understand that and agree that once you got intubated, if he got intubated, he would have to go to the ICU? And approved by code, I'll go?
MATLOCK: He understood that mechanical ventilation was not something that could be provided on the unit. So he was told if he did become intubated he would go to the ICU and that he understands.
Thanks.
QUESTION: Was he receiving any treatment in addition to the monitoring that we just don't do on the floor? Any drips or anything like that?
MATLOCK: No. He wasn't.
QUESTION: Mostly monitoring and maybe oxygen?
MATLOCK: He was on at that point in time, on 100% breather. So there were not a whole lot of options.
QUESTION: Was there discussion of what impact his staying on the medical unit would have on the other patients on the medical unit?
MATLOCK: No. In terms of the care requirements being taken away from other patients who are -- no, we were able to get the support for that patient while maintaining nursing care support for the rest of the patients.
QUESTION: Can you elaborate on his specific adversion to the ICU? Why didn't he want to go there?
MATLOCK: The last time he was there he spent 52 days in the ICU and had several courses of treatment that weren't particularly nice for him and I think he remembered a lot of what happened, which sometimes in the ICU, you don't remember a lot. And he just adamantly did not want to go back to the intensive care unit and I don't know -- carol, was there anything else specifically -- .
Part was basically the ICU not really psychosis, but the fact you don't get a lot of sleep because of treatment, care and the lights always being on and the other part was, there are no windows in our ICU, and his master's degree was in forestry and he liked to look out a window.
Two more quick questions.
QUESTION: What about a psychiatry consult? If he is refusing treatment, you can call him suicidal and -- what were the psychiatric meds he was taking? Especially if he was having psychosis that was induced by treatments.
MATLOCK: My sense, and I think the sense of everybody who took care of him was that this guy was really clear. He really understood what was going on and just to clarify, as far as I remember the case, as far as I'm involved, there wasn't any treatment he was refusing. He basically wanted all the treatments that they could provide him to keep him alive. What he didn't want was to be in a particular place. He didn't want to be in an intensive care unit. So what he said was, give me everything and do everything you can for me consistent with keeping me out of the ICU.
QUESTION: But isn't that refusing treatment? Because the nurse was saying that he could not be treated on the ward -- by the way, even if it's just to cover your ass kind of thing, I don't know why they wouldn't be a psych. evaluation.
MATLOCK: Maybe we'll leave that to john about whether this consultation is refusing treatment or not, and how you respond to it.
Good question. Thank you very much. To help us answer some of the -- or think about some of these questions, John Lantos say pediatrician who spent about 20 years at the university of Chicago and just over the last 4 months, decided he needed a new challenge in life and has moved to Kansas city to start up – I think from scratch, a bioethics program at children's mercy hospital. When I started thinking about this case, I was thinking that it was an interesting issue. But it hasn't been covered very much. So I was trying to think of somebody who was an interesting and insightful person in bioethics and it turned out that john was our first draft pick and we got lucky enough to land him.
LANTOS: Well thank you very much. It's great to be here. I don't have slides. So you can turn up the lights. We could have had to give this case a name, we could call it the Barltebly the scrivener case, after the famous Melville short story where a man places himself in an office and whenever they try to get him to move, simply says, I would prefer not to. Without any reasons. It's always interesting in an ethics case to think about how the story is presented. The aspects of the story that are problematised, and the ways in which the ethics issues are framed. The way we frame the questions determines the universal possible answers. It's hard to give answers to questions that have not been asked and it's hard to give the right answers to the wrong questions.
For a while, our ethics consult service in Chicago would fill out forms in the first two blanks would be what is the ethics question the team asked and the second would be, what do you think the real problem is? The answers were often not the same.
It was interesting in this case that we first learned of AL -- are those the initials? He lives locally and has a supportive family. One that is presumably and as we found out very involved in his care. One could stop right there. Sometimes the best way to discuss ethics case systems to stop after the first slide. One could stop right there and ask how these facts alone might influence what might follow since he lives close, we can assume he knows the clinicians very well and that they know him. Since his family is involved, we can guess that they might somehow become important. Remember, the first rule of story telling or playwrighting is that if there is a gun on stage in act 1, someone will get killed in act 3. [LAUGHTER] Family could turn out to be the pivotal swing vote. Will they side with him and against us, or with us and against him?
For another thing that we know about all ethics cases, especially the ones that make their way to the ethics grand rounds is, there will be conflicts. This occurs just as certainly in the New England journal or a case reporting, the most nocuous beginnings lead to the most horrific endings. The man's whose chief complaint is a cough, always ends up with cancer. But the poor college student who goes on vacation to Mexico will always end up with a gruesome paracytic infection. And a close family will always have to choose sides.
We next learn that al has a complex chronic disease, an immunodeficiency leading to countless hospitalizations. None have killed him yet. We don't learn whether these treatments have led to any permanent physical or cognitive impairments although we know he is smart in completing a college degree. We don't hear at this point, as the case was presented, what he thinks about his illness, or what he knows about his prognosis. Has he already outlived his life expectancy? The current consult was called on a recent hospitalization that we must assume is typical of his countless hospitalizations. It did lead to transfer to the ICU where he stayed for months and then was transferred back to the floor. Did he question that transfer back to the floor? Was he perhaps transferred too soon? Has he been transferred back in this way many times in the past? Do his bounces back and forth between the ICU and the floor lead to a lack of trust in the caregivers? How does he tell the story of his illness and how does this episode fit into the narrative that he has developed for himself?
There is always more to know when we do ethics consults. We want novels and we end up getting sonnets or sometimes just a haiku. At the point where the conflict arises, the patient insists he doesn't want to go back to the ICU under any circumstances. I loved the question; the real reason was because it didn't have a window. I feel that way about my office sometimes. So I understand that. But he also did not want to forego life support, particularly intubation, CPR and mechanical ventilation, and we can assume that long sensitive discussions ensued with staff and with the patient's family and we will assume that they were conducted expertly, that further discussion would not help. And that after exploration of all the possibilities, the patient who we will assume was competent and non-mental healthy ill, otherwise it's a less understanding case, wants ICU care in a non-ICU care by professionals who are not well-trained in providing such care on a ward that is not equipped to provide such care, that he understands that this is non-optimal and he and his caring families are perfectly willing to accept the consequences of their choice for sub optimal care. Well, even though he doesn't have a mental illness, that is just crazy. But, not presumably naive. After all, al is smart, sophisticated and must have known not just the consequences of what he was asking for, but exactly how bizarre what he was asking for really was. So, then the questions that are asked as the case was presented and that I will focus on, although try to end up by tying them all together in a slightly different way, are partly specifically about the patient.
The first question is, or the second one, but the first one, is it acceptable to encourage the patient to return to the ICU, even to strongly encourage him? The answer to that is so clearly yes that one must wonder, to paraphrase Barney Frank, what planet the person who would ask that must live on. The answer to that question of course is the planet of bioethics, or the strain of bioethics that sees patient autonomy as such a fragile flower it must not be threatened by the slightest hint of disrespect that might be implied by questioning any decision no matter how bizarre a person might make. And that's a view of autonomy. That is consistent with absolutely nothing in classical philosophy and absolutely nothing in traditional medical ethics. Emanuel Kant would not have understood that view of autonomy. Instead his view is only autonomy when it is subservient to reasons of discussion of options and attempts to convince the patient of the rationality of his choices and that going back to the ICU would be better and not only permissible for Kant but would be obligatory. John Stewart mill, another great philosopher of liberty and autonomy would have a similar view. We achieve liberty by the free exchange of ideas in trying to persuade one another of the superiority of one view of the world over another. That's the essence of liberty for mill. In this case the leading philosophers of autonomy and traditional medical ethics with its focus on the patient's best interest, would give the same answer, of course you try to encourage the patient to go back to the ICU in an unashamed way, unashamed to be acting paternalistically. Traditional medical ethics would go further and coerce the patient to go back to the ICU. And that in today's world would be going too far. But trying to convince him? I mean, give me a break. If you haven't already tried as hard as you could to convince him, there wouldn't have been an ethics consult here. So to ask that now is one of the questions for the consult is a little bit like what flight attendants do. It is you have to have your seatbelts buckled to push away from the gate and then they show you how to do it.
[LAUGHTER]
But the questions that are asked aren't just about this particular patient. Others are asked in a more general language of generalizability that is so common among philosophers. Is it acceptable to provide care in which one is nonexpert when experts are available, provided the patient requests it? That is, can someone ask you to do something outside your range of expertise? As a generalizable question, this one seems a bit coy. The answer has to be yes and no. Depending on the circumstances of the general pediatrician, I treat many patients for many things for which there are experts available who know much more than I do and who therefore might do a better job. I take care of kids with asthma or cerebral palsy or seizure disorders and if patients request a consult from a specialist, I usually accede although sometimes I try to talk them out of it. I'm often working at or just beyond the limits of my expertise. The question is not whether or not one is an expert as if that is a dichotomous category, but whether one is expert enough. And that gets a little more complicated. If a patient asks me to do their brain surgery or open heart surgery, I would not do it. Even if the patient understood that I was incompetent, asked me to do it any way and insisted they would not hold me responsible for bad outcomes. I would say, no, no. That lies too far outside of my range of expertise.
So the question in this case is whether keeping a patient on a ventilator on a floor is more like a general pediatrician treating asthma or a general pediatrician doing open heart surgery. The answer is not completely straightforward. It depends in part on just how sick or unstable the patient is. After all, ventilators can be used in wildly different circumstances. We send patients home on ventilators sometimes. And expect them to be able to take care of themselves. We even send little children home on ventilators and expect their parents to learn how to provide the care that we don't allow trained RNS to provide on a hospital floor situated down the hall from an ICU. So we have to ask whether these rules about where a patient can get certain treatments in the hospital are based on actual assessments of expertise or safety or competence or whether they are as is so often the case in hospitals, merely bureaucratic and administrative rules set up for the convenience of staff or dictated by the billing requirements of hospitals or some other non-patient oriented set of considerations. Or perhaps the regulations make sense as general guidelines but don't necessarily apply to a specific outlier case. Imagine for example, this patient had chronic respiratory failure and was ventilator dependent. Imagine further his loving and caring family learned his ventilator care in order to take him home and that they were able to provide good care at home and imagine than they then said they would be willing to provide similar care while he was in the hospital and that since they could do it at home, they could do it on a non-ICU ward at the NIH. It would seem a little odd for the NIH to respond that the RNS who work there do not have and cannot attain the expertise to provide similar care, that the NIH was unwilling to bend the rules to allow the family to provide such care. This would start to seem less like a safety issue or less like an issue of expertise, or an issue of autonomy run amuck. And it would seem like a simple power struggle. So our hospital makes the rules. Now that doesn't seem to be the case as this one played out. It seemed that this patient if he needed a ventilator would need many other therapies as well. But the general rule of whether patients can demand exceptions to hospital policies it seems is closer to the heart of the ethics issues that this case is raising than the specific decision.
And finally, should clinicians, should as far as nurses be asked to provide such care, that is care that they think outside their area of expertise, this also can be divided up into a couple of possible questions. One is, should the hospital administration force clinicians to provide such care and the answer to that would almost surely be no, assuming facts about expertise and the scope of services are correct. The more interesting question might be whether hospital administration should ever permit clinicians who are willing to provide such care to do so even though this means bending hospital rules, and this is a tougher one from a pure ethics perspective. That is assuming there is such a thing as a pure ethicist, my answer would be, yes, why not? It falls into the realm of alternative therapy, or terminal sedation or other things that not everybody wants to do but some people are willing to do. People who may not wish to participate, don't have to. Others may be willing and it won't do any harm and might do people some good. At least psychosocial good if not best medical good. And as long as the therapy in question is legal, why not? Why not encourage pluralism, diversity, the blooming of thousands of autonomous flowers on both sides of the doctor/patient accommodation. From the perspective of organizational ethics, I think the answer would be different and there I think at least in the some cases, we would have to say even as clinicians were willing to, we might not want to allow them.
So this touches on the question of whether providing such care would detract from the care of other patients on the floor. In fact, were we willing to start tailoring care to every patient's idiosyncratic preciouses and needs, imagine the chaos that would follow with patients. They would want to start having babies in the rooms, having dialysis in their cars, surgery in the clinics. We might have a responsibility to set limits and standards based on safety and efficacy dictating which treatments should be provided where and which exceptions should challenge those rules and if it would lead to transaction costs in determining which particular exceptions were appropriate that would inevitably end up taking time and energy away from our primary mission, and probably equally inevitably lead to playing favorites for our favorite patients for whom we would be willing to perhaps allow more variation in standards. In other words, administrators or clinicians acting as administrators are permitted to be paternalistic in ways that clinicians acting as clinicians are not. The case then highlights one of the important features of patient autonomy as it has developed in a peculiar world of American bioethics clinical practice and health law. We respect patient autonomy but only for a carefully prescribed and thoroughly paternalistically defined set of choices, that is, patients are granted autonomy to choose among offerings on the menu, but have no input into what goes on the menu. These limitations on what goes on the menu are made by state licensing laws, which practitioners can seek by the FDA, hospital administrators and insurance companies, by quality improvement programs, by IRBS, and by many other entities and organizations.
Thus, patient autonomy is a little like the autonomy of the driver of a bobsled at the Olympics. They have to go down the track. They can decide how fast or slow to go but they can't decide to leave the track. Or like drivers in a bumper car rinks in an amusement park. They can drive anywhere they want and crash into anywhere they want but the rink is designed so they can't hurt themselves. Looked at this in way, the case is about the ways we developed to respect certain exercises of autonomy, but constrain the range of available choices. So should we ventilate on the floor? Should we allow him to dictate his care to that degree? I don't think so. I think these sorts of paternalism are entirely appropriate. I think we have the right, even the obligation to act paternalistically in the service of other important goals, such as efficiency, fairness, and cost effectiveness. But not in this case in the service of the beneficence, the traditional goal of paternalism. That is what we are doing is not, I think, in this case, what is best for the patient, because only the patient can decide what is best for him. And it seems like what he is really asking for in this case is to have his life prolonged as long as it possibly can be and as long as he has a view out the window of the trees that he loves. We're not doing what is best for him or what he wants by refusing to ventilate him on the floor or by transferring him to the ICU. But he may not be doing what is best for himself either. And he knows it. And that is his right. Even though it may be difficult or painful or even tragic to watch him exercise it. This is the conflict that he and his family need to work out. His family, I think, would probably convince him if they decided to and if they are as close as we were led to believe at the beginning of this case, and if they tried really hard in ways that we probably could not. And it is ultimately their story. We need to remember how much we are sometimes just bits in the dramas of our patient's lives. And deaths. Thank you.
[APPLAUSE]
We'll give everybody a second for the end of that story to sink in before we start a new one. Marion?
QUESTION: Thank you. That was a terrific discussion. But I want to ask about the one point you made in describing AL as crazy. The choice as crazy. And I think that there were a couple of things I would say that in a person who has spent over half their life institutionalized because of a chronic disease that really distort their ability to do the sorts of things that you and I could do, I think that some of us may view his choice as irrational but this is a person who might expect he is going to have to spend another two months in the ICU, which from his perspective sounds like an imprisoning kind of experience. And I'm not sure that he is making necessarily an irrational choice. He may be very torn about the desire to save his life and the desire to have a quality of life that is simply not really possible in a person with an immunodeficiency syndrome. I really think that we ought not also to dismiss the fact that many ICUs these days are designed with in does because of this same concern. So I think raising the question about there are ways in which institutions can accommodate the needs for quality of life in very severely chronically old people, ought to be put on the table as we think about how to respond.
LANTOS: Thank you. I think I agree with everything you just said. When I had written this up, I didn't know about the window issue. So the window issue is an interesting twist on this. But I guess what I meant by crazy was, an internally inconsistent set of choices. That is, if he said enough is enough, I have been chronically ill for this long time, I know that the only way to stay alive is by getting ICU-type therapies and I know ICU-type therapies have to be done and I don't want it anymore. I'm ready for palliative care. Then I think we wouldn't have had an ethics consult. If he said I want to go back to the ICU, maybe if it had windows, we wouldn't have had a council. But to say I want these things I know you can't do here, and I want them anyway knowing they can't be done well. It seems that's what I meant by -- a little crazy.
QUESTION: So I was wondering if you could take a minute and comment as a pediatrician, on the transition of chronically ill individuals where the chronic illness starts in childhood and making that transition into adulthood. We see a lot of chronically ill persons and at age 28, I certainly seen people behave like 12-year-olds. And I was wondering what your thoughts were vis-a-vis that,vis-a-vis the relationship with these very special nurses and whether or not there might have been either an artificial, intentional or unintentional delay in the maturity and of the development of rational thinking and abstract thinking.
LANTOS: Great question. Worth at least a session all by itself. And there had has been a lot of work on transition to adulthood and kids, particularly those kids who never used to survive to adulthood. So maybe not so much at the NIH. I don't think how things are organized here but in the real world, usually what happens is people transition completely from one whole set of caregivers to another and one whole set of bureaucracies to another. So everything changes and people fall through the cracks in major ways. Pediatricians, we spoil our patients. I think they are much more accommodating to things like child life. I mean, we think people who are sad to be in the hospital that is something we need to take care of. Which doesn't seem to be the case in most adult wards that I know. So that may be part of what is going on. The other piece is people with complex chronic illnesses often don't develop the sort of autonomy they usually do because they are not allowed to by caregivers who protect them or want to protect them when the bad choices are made. So all of that could have been going on here. None of that is what was presented as the case. There would be much more to say if we wanted to.
QUESTION: I understand the team's concern with the fact that the patient, by staying on the floor was going to get sub optimal care, and in your response to the previous question, you said that you could make better sense of the story when the patient said I give up, I don't want care. And I don't understand why we see those as the only option – that I'm for all the care in the world, or zero care as the only option. Rather, I think that it's quite possible and quite rational to say, you know what? I want sub optimal care, I'm happy with less because there are other things I want to get as well. And as a matter of fact, it seems to me there are many other cases in which people are very comfortable with the fact that they are getting sub optimal care because they decide to preserve some habits or practice that is they value. To give an example, there are a number of cases in which there is medicine that works only if you supplement that with a particular diet. People know that. Well, if they don't do the diet, they will not get all the benefits. And we don't think they are irrational because they say, it might not work as great, I'm going to take the medicine, I'm not going to do the diet. But I value eating a, b & c. So we don't say that the only rationale choice is you either do the medicine and commit yourself to the diet and satisfy the other things you value, or you say you know what, I'm not going to take the medicine at all—do you see my point?
LANTOS: I do. And again, please don't go away thinking that I'm saying patients can never choose trade offs between what doctors might say would be the optimum regimen and what is the best compromise for them based on values other than maximal prolongation of life for disease cure rates. I was trying to say just the opposite. That most of the time we ought to accommodate all sorts of trade offs between our ideas of optimum and patient values. The question I think that this case raises is what are the limits to that? And I think there are limits. So, and I tried to highlight that with my silly aside about a patient asking me to do open heart surgery. I mean if he had said, I want open heart surgery and I want it done in my room because the OR doesn't have windows. That would seem to be a sort of accommodation that would push us beyond what is appropriate and we would have to say, I understand your values and I understand your preferences, if they even make sense to me and we're not going to do it. The question of where to draw that line between sort of bending our standards to accommodate patient preferences and something that seems so crazy that we are not going to go that far is what this case is about.
QUESTION: So at the beginning of your presentation, you pointed out that the story that you see, the narrative that occurs, is often everything. And before I go further, I recommend that everyone in this room revisits Kurosawa's "Rashoman" so you can understand how different views can come up with different ways of understanding what is going on. In this case, it's important to understand that the patient was not asking to be intubated nor ventilated in the room. His view of life was that when you go to the ICU, they inevitably do some very uncomfortable things to you. And I would have to say that my experience is that the entire ICU medical experience is always different. You go there, tubes get put in your arms you didn't have before, you have many more blood draws, many more needles going on. People do many more times they come into your room. You never get any sleep. And so, even if he was not intubated in the ICU, and my understanding of the events at the time was not that the patient was going to be sent to the ICU to immediately get intubated, but was going to be sent there because the consensus of everything, physicians, nurses, was that he was very soon going to need to be intubated. But that event was not predictable. It wasn't 100%. And in some ways, one could paint this picture the same as someone who has a large aortic aneurysm and needs it fixed.
And any day may blow that aneurysm and may decide, you know what? I might die on that surgery table. I'm going wait. And everybody keeps saying, but you're eventually going to die. Your likelihood of living another year is very little. So what also matters – and what we didn't hear was whether he eventually needed intubation in that setting or whether he made it through. In that sense, the patient is also sometimes a judge of where he is going and what is going to happen. And I think what that needs to be brought into this as well. Often these things are judgment calls. And sometimes the patient can have better judgment about whether they are going to go or not in the near future. From his point of view, one more day on the floor was better than one more day in the ICU. And the event and he realized that he might have a bigger challenge of -- chance of dying. He was putting a lot more burden on the nursing staff but was so unhappy at the prospect of being poked, prodded and kept up all night in the ICU that he wanted to see how far he could push it before he had to go. So it wasn't, I don't want to ever go to the ICU or I want to be intubated on the floor or ventilated on the floor. But rather, I think I can get away with another day or two before I have to go to that ICU. And let's let the event decide rather than the physicians decide.
LANTOS: Thank you. And maybe we could debate whether that's the right way to do it. I think hearing the patient's version of the story, and it sounds like you were there and knew it, is crucial. On the aortic aneurysm, it's not quite at the artistic level but do you remember seeing the story of the great heart surgeon who had an aneurysm. It was written up in the New York time 3-4 years ago. You could google it. And he said, I'll just wait. I think it will get better. So being a fully informed patient, the one who invented the surgery, doesn't necessarily lead to better decisions.
[LAUGHTER]
QUESTION: This is following a little bit on what the previous person said. I was wondering a little because I hadn't heard so much about this possibility of a mind body connection. It was the thought of going to the ICU not having windows, possibly having very invasive treatments could impact his health in such a negative degree he might need more medical treatment. So it might make sense for the event to arise. I was wondering why a focus on logic and not necessarily on values or possibly this focus of the impact of mind and body work because we know that sometimes things like depression can increase heart disease and things like that. What are the considerations there?
LANTOS: Great point. I mean, what we consider optimum treatment is obviously not always optimum. And so that would be a whole other narrative angle at least. If that was his reasoning or story. Then that would have to be approached from a whole different level. How sure are we he will need the ICU. How sure are we he will need to be intubated. Will it be more likely if he is depressed and could he be making a decision that is the best medical decision as well as the best emotional one? Our last question.
QUESTION: I think patients are entitled to ask anything they wish. But we are not obliged to deliver everything. Nor are we equipped. And I think this case, clearly depicts this paradigm and how to bring these two things together. Also, sometimes patients are very rational but they have one thing that is crazy as we do. Therefore this patient clearly was behaving very rational. Nobody wants to go to the ICU. But he knew he was going to go and he was fighting as I stated before, to delay the inevitable, to the last potential minute. And this is very clear. And finally, going back to other issues, I think that this is in parallel thinking with the presentation to these people that ride motorcycle and do not want to use the helmet, but when they get into the hospital they want everybody to take care of them. They want freedom to the left, but they don't want freedom to the right. Or they want us to apply our knowledge et cetera without considering that they didn't do their part.
LANTOS: My favorite are neurosurgeon whose ride motorcycles without helmets. [LAUGHTER] and I have known a couple. Oncologists who chain-smoke as well. Anybody who did want to go to the ICU, that's the person you need a psyche on.
Nobody wants to go there. Balancing what the goals of going are with the patient's goals, preferences and values, I think it's where sort of tension arises.
One more.
QUESTION: Quick response my experience of the ICU here is it is not one-size-fits-all. And what we haven't heard is why the problem in the ICU and what is their view of how he might be handled when he went there?
WENDLER: The sequel. Alright, joining me in thanking John and Anne Marie.
[APPLAUSE]
ANNOUNCER: You've been listening to NIH Clinical Center Grand Rounds recorded February 3, 2010. Today, we had a special "Ethics Grand Rounds" presentation on the topic, "Navigating Mismatches in Patient Preference and Staff Expertise." Our speaker was Dr. John Lantos, Director of the Children's Mercy Bioethics Center at Children's Mercy Hospital in Kansas City. You can see a closed-captioned videocast of this lecture by logging onto http://videocast.nih.gov -- click the "Past Events" link -- or by clicking the "View Videocast" link on the podcast homepage at www.cc.nih.gov/podcast. The NIH CLINICAL CENTER GRAND ROUNDS podcast is a presentation of the NIH Clinical Center, Office of Communications, Patient Recruitment and Public Liaison. For more information about clinical research going on every day at the NIH Clinical Center, log on to http://clinicalcenter.nih.gov. From America's Clinical Research Hospital, this has been NIH CLINICAL CENTER GRAND ROUNDS. In Bethesda, Maryland, I'm Bill Schmalfeldt at the National Institutes of Health, an agency of the United States Department of Health and Human Services.
