Ann. N.Y. Acad. Sci. ISSN 0077-8923

A N N A L S O F T H E N E W Y O R K A C A D E M Y O F SC I E N C E S Issue: Rethinking Mortality: Exploring the Boundaries between Life and Death

Prolonging life: legal, ethical, and social dilemmas Steve Paulson,1 Christopher P. Comfort,2 Barbara Coombs Lee,3 Sam Shemie,4 and Mildred Z. Solomon5 1 Wisconsin Public Radio, Madison, Wisconsin. 2 Calvary Hospital, New York, New York. 3 Compassion & Choices, Denver, Colorado. 4 McGill University, Montreal, Ontario, Canada. 5 The Hastings Center, Garrison, New York

The ability of modern medicine to prolong life has raised a variety of difficult legal, ethical, and social issues on which reasonable minds can differ. Among these are the morality of euthanasia in cases of deep coma or irreversible injury, as well as the Dead Donor Rule with respect to organ harvesting and transplants. As science continues to refine and develop lifesaving technologies, questions remain as to how much medical effort and financial resources should be expended to prolong the lives of patients suspended between life and death. At what point should death be considered irreversible? What criteria should be used to determine when to withhold or withdraw life-prolonging treatments in cases of severe brain damage and terminal illness? To explore these complex dilemmas, Steve Paulson, executive producer and host of To the Best of Our Knowledge, moderated a discussion panel. Pediatrician Sam Shemie, hospice medical director Christopher P. Comfort, bioethicist Mildred Z. Solomon, and attorney Barbara Coombs Lee examined the underlying assumptions and considerations that ultimately shape individual and societal decisions surrounding these issues. The following is an edited transcript of the discussion that occurred November 12, 2013, 7:00–8:30 PM, at the New York Academy of Sciences in New York City. Keywords: resuscitation; end of life; organ donation; death; physician-assisted dying

Steve Paulson: It’s great to be back and it’s wonderful to see all of you on this very cold New York evening; I’m so glad all of you could come out here and join us. Last month, we kicked off our series, “Rethinking Mortality: Exploring the Boundaries between Life and Death,” with a fascinating discussion on the science of resuscitation, and I am quite sure that we are in for another special evening. Tonight we will be talking about the legal, ethical, and social dimensions of end-of-life care, from do-not-resuscitate orders to organ donation protocol, physician-assisted dying, guidelines for withdrawing life-sustaining procedures, the cost of end-of-life care, and doctor–patient relationships. To be honest, this subject is so big and so complicated that we cannot possibly cover all the issues that might come up, but we’re going to try. And we have a terrific panel to help us sort out these questions. Let me introduce our speakers. Christopher Comfort is the medical director of Calvary Hospital, which coordinates and facilitates clinical services for palliative and end-of-life care. Chris is board certified in internal medicine and geriatrics and is a member of the faculty of the Albert Einstein College of Medicine. His research interests include advanced directives, spirituality, and palliative care. Barbara Coombs Lee is president of Compassion & Choices, a nonprofit organization dedicated to expanding and protecting the rights of the terminally ill. She practiced as a nurse and physician assistant for 25 years before beginning a career in law and health policy. As a private attorney, as Counsel to the Oregon State Senate, and as Chief Petitioner for Oregon’s Death with Dignity Act, Barbara has championed individual choice and empowerment in health care. Sam Shemie is a professor of pediatrics at McGill University, the medical director of the Extracorporeal Life Support program at the Montreal Children’s Hospital, and the Bertram Loeb Chair in Organ and Tissue Donation at the University of Ottowa. Sam’s area of specialty is organ replacement during critical illness; he’s been involved in developing guidelines for organ and tissue donation and transplantation in Canada. Mildred Solomon is president and chief executive officer of the Hastings Center, a bioethics institute that analyzes the ethical issues in medicine, health care, life sciences research, and the environment. Millie is also clinical professor of anesthesia at Harvard Medical School, where she doi: 10.1111/nyas.12476 C 2014 New York Academy of Sciences. Ann. N.Y. Acad. Sci. 1330 (2014) 19–39 

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directs the school’s fellowship in medical ethics. She has done both research and policy work and has trained bioethicists from around the world. Welcome, all of you. Paulson: Millie, let me start with you. Why is end-of-life care such a hot issue now? Mildred Z. Solomon: We are dying in ways that the human species has never died before. In a relatively short period of time—a few decades, about 50 or 60 years—the way in which humans die has been transformed. We used to die from acute infectious diseases or injuries and in ways over which we had very little control. But modern medicine has changed that, and now, in the developed world, in particular, we are living longer, but it’s a Faustian deal. We’re living longer but with progressively long chronic illnesses that progress and during which we become more frail. And the kinds of technologies that have enabled us to live longer also present very difficult choices about how best to use them; they’ve been called “halfway technologies,” because they can’t always restore us to where we’d like to be, but they can keep us going. So this raises all kinds of questions about how to use these technologies so that we benefit from them in all the ways we want to—and they certainly do bring us enormous benefit; but it also requires careful reflection about when burdens may outweigh the benefits. Paulson: We have all these technologies at our disposal now that keep people alive longer than ever before, so there’s obviously an ethical dimension here. For example, should people in horrible conditions stay alive? Is this also a financial issue? Solomon: Things exist at the individual/family and societal levels. As a society, we’ve had to come up with a sort of framework to guide us about what’s ethically and legally permissible, and that’s something that has evolved over about 25 years. The Hastings Center has been involved in creating that framework; there have been many court cases, so we’ve had a societal framework for doing this. But then it has to get played out at the family level. In the United States, we’ve given enormous discretion to individuals to make life/death decisions; we believe that people should be self-determining and should have the opportunity to make choices. But in the aggregate, all of the ways in which the system has been built—and all that choice that individuals have—hasn’t really been designed in ways that necessarily consider the common good. That’s where the financial picture may come in. We have designed a healthcare system that is mainly focused on providing highly technical, highly specialized care to patients without any guidance about how to make the best use of that care, and we’ve put much less emphasis on lower tech care. Yet more high-touch, labor-intensive care might actually be better for all of us in the long run and may even have an impact on cost. We haven’t designed that system yet. So there’s interplay between the freedoms to make our own destinies and to design a system that is in the best interests of everyone by taking costs into account. Paulson: Chris, let me turn to you. You are on the front lines of palliative care. What do you see as some of the most difficult issues that you have to deal with, and that you see others needing to deal with? Christopher P. Comfort: One of the issues germane to death and dying and the idea that we’ve got an armamentarium or the ability to impact death and dying one way or the other has to do with promises made. And I wonder if many of the technologies that we have end up seeming like promises to patients and families that an inevitable event is not going to occur. Paulson: Do you mean the promise or the hope that there will be a cure down the line? Comfort: No, different than that. Let’s consider, for example, the panel discussion here last month on resuscitation, where you introduced the idea of new technologies that, in fact, make resuscitation successful

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and you can restore individuals to have time with their loved ones when you didn’t expect them to survive. But here in New York City, if you look at success rates of resuscitation for on-the-street collapse, the rate is about 1.8%. If you look at resuscitation in a hospital setting, even in a tertiary center, resuscitation rates probably peak at about 30% for the entire population as a whole. I take care of cancer patients who are at the end stages of their illness, and if one looks at success rates of resuscitation in that population in a hospital setting, it’s less than 5%. So when we talk about something like resuscitation, or new chemotherapeutic interventions, or new technologies for surgical interventions, it’s very important for us as a medical community to be clear about what it is that we’re offering and then looking at those success rates and translating that information for both patients and families so that what we’re offering are not promises of success that are unrealistic and not borne out by the actual evidence of what these interventions have to offer patients and families—and then have the tough discussions about what the benefits or risks are of these interventions. At end of life, the way I always look at it is that you have one chance to influence living—I’ve had a hard time understanding a good death. It’s easy for me to understand what living is like before someone dies, and it’s so important during that period of time to make sure we’re meticulous and very careful about not only the choices we offer, but also the information that we give out because it is such an important sacred time for the patient and family. Paulson: You used the phrase a good death—I think we should unpack that idea. Sam, let me bring you into this discussion. What is your idea of a good death? What makes a good death? Sam Shemie: One that you’re not there for, perhaps . . . [audience laughter] I want to first give a bit of context. I’m a scientist, an interventionist, and a technologist; I work in an intensive care unit and run a team that deploys heart–lung machines to sustain life. I would like to draw our attention to the following distinction. There is a big difference in end-of-life issues between chronic terminal care/terminal illnesses and acute catastrophic illnesses in previously healthy people. Everybody would agree that acute catastrophic illnesses in previously healthy people should be treated with everything possible to reverse the life-threatening situation. This is very different than the chronic terminal phase of an illness in which a decision has to be made about what will be provided and what will be withheld. And we know that in our society—I’m from Canada and it’s equivalent to the United States—the vast majority of all deaths in society currently are preceded by a decision to withhold or not provide a treatment. In the vast majority of those cases, it is by reasonable discussion among reasonable people that reasonable decisions are made. There are a number of exceptional cases where conflicts between healthcare providers and families and individuals get inflamed in the media and exaggerate the severity of the issue. But in most cases, when you speak to families and people towards the end of life after chronic illnesses, and as long as you’re honest and have a trustful communication with that family, the correct decisions are being made. So what is a good death? A good death is as pain free, suffering free, and well informed as possible in order to make that decision, and when you ask people, they want to make sure they’re not a burden to their family and that their affairs are in order; that’s certainly what is found in surveys of the public in our country. Paulson: Barbara, let me bring you into this discussion. You have worked with patients who have had these long chronic illnesses and who are terminally ill. What’s your definition of a good death? Barbara Coombs Lee: A good death is one that honors the life that’s been lived, and that depends on a person’s values and beliefs. If you think of a life like a play, where the play was fantastic and meaningful, the acting was terrific, the characters were compelling, the meaning was persuasive, it was deeply moving, and then in the last act, nothing really culminated; there was no real pinnacle or catharsis at the end, or it was a devastating experience and everyone in the theater left with posttraumatic stress syndrome—that’s not a good play. A good play, like a good death, is one that is of a consistency and the ending of it an honor. I often say that death is not something to run from because it is inevitable; we cannot run from it. But it C 2014 New York Academy of Sciences. Ann. N.Y. Acad. Sci. 1330 (2014) 19–39 

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is something to be worked toward. We can all live our lives every day and that’s really what it’s about; it’s about sucking all the sweetness out of life every minute and every bit of meaning out of our lives, so that when death becomes imminent, it doesn’t seem premature—it doesn’t seem as though we haven’t lived. So I would say a good death is one that seems appropriate and right, like the life has been lived and the meaning has been had—the death honors that. Paulson: I’m guessing that all of you would agree with that definition, but it’s not as simple as that. And I guess the question is, why is it that death, almost by definition, is going to be difficult in many situations? Why are there so many cases where it would seem that people live longer than they should or that, in some cases, family members feel like more extreme measures were not taken? Why do we have these kinds of problems? Chris? Comfort: There are a couple of issues that we’ve seen that help us define the practicalities or the specifics of what we think of as a good death, the definition of which I don’t even pretend to know. The first question that I would ask relates to the location of death. We train medical people at Calvary, and we typically take care of cancer patients who have been ill for long periods of time. The first question we’ll ask them is, “Where would you like to die?” Universally everyone will prefer to die at home. And then I’ll look at my latest statistics here in New York City to see that for 15,000 cancer deaths in New York City, there are 2,700 deaths at Calvary, 3,000 deaths at home, and 9,000 deaths in hospitals in New York City. And I’m confused; it’s a chronic illness, it’s anticipated. The decline, in fact, is fairly demonstrable, yet the site of death for someone, who according to polls, says where they would like to spend their last days ends up being different than what they say before that time. Paulson: Why aren’t there more people who actually do die at home then? Solomon: It’s one of those perfect problems because there are many different converging reasons. One is the way our healthcare system is built; these cancer patients have seen specialists and have been treated by an oncologist, but also we tend to slice up and segment the way in which we provide care here. Our whole system is designed as a set of specialist encounters without anybody really taking patients under the wing and helping them understand their situation, navigate the system, and think about their own goals of care. There’s strong empirical evidence that physicians collude in this too, in that when they do have a sense of a dire prognosis, they don’t share it very early. Paulson: So you’re saying there are certain critical discussions that need to happen . . . Solomon: . . . that don’t happen . . . Paulson: . . . between physician and patient, or perhaps between physician and family, and things are just not being discussed. Solomon: For example, there was a study of women with metastatic breast cancer; 85% of them had discussed their situation with their family and friends and said they wished they had had a conversation with their doctor—and only 19% of them had. So something’s not happening in the exchange that’s really honestly framing what the situation is. Paulson: Why not? Why aren’t doctors having those conversations? Solomon: Certainly oncologists tell us, and we’ve done some studies on this, that they feel that there’s a concern about reframing people’s hope or dashing people’s hope.

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Paulson: So the idea is that you don’t want to tell people that it looks like they have 6 weeks to live? Solomon: And you don’t want to be the one to tell them—both. And we’re here to talk about meaning, and one of the big takeaways for me is that people can take meaning out of their situation if they understand it and there’s somebody there to accompany them and hope can be reframed. It can be hope for the sorts of things that Barbara was talking about, for life closure, to deal with the regrets that I might have about my relationships in my family, to say farewell, to tell my kids what I want them to know—my words of wisdom for the next generation. We don’t create a space for that kind of meaning to occur if we are only looking at the technical aspects of our care. And we don’t have any structures in our healthcare system to have that kind of honesty and breadth of that kind of conversation—nor do we have anyone to travel with as we go through this trajectory. Shemie: In defense of doctors [laughter], I feel compelled . . . Solomon: I set you up! Shemie: You did, thank you! When you film interviews between physicians or nurses and families during periods of crisis, or when giving bad news, there’s a big difference between what is told to the family and what they hear. There are certain words that shut people’s minds off—words like cancer. “Once he said that, I didn’t hear anything else that he said.” The reality is that communication is a two-way process. It’s true that when you survey families, they say that they wish their physicians had told them this. But when you survey providers, they’ll say that they talked about it, but the patients didn’t receive it. So in defense of communication from healthcare providers, we know that when we talk to families, the reason that we repeat things frequently in different meetings is because it is difficult to take everything in, and the style of communication impacts profoundly what families hear and are able to process. It’s true that different providers, depending on the technology of the wording, may or may not be good communicators. I think Chris is an excellent communicator! Comfort: Sam is exactly right. We have the rule of five: you say it the first time and you assume nothing was heard; you say it the second time and maybe something was heard. By the time you get to the fourth or fifth time, you know that what you’ve said hopefully has been appreciated, and then you can use the techniques of repeating back what families tell you. More important is the idea of incorporating difficult discussions about prognosis—going to the idea of how to reframe hope—into discussions of the reality, and how that would influence or change the person’s planning? I always say that when I get lung cancer and it reaches my brain, somebody tell me because I’m going to take my beach chair and I’m going down to Key West, because I’ve decided how I want to spend my time. But for me to make that decision, somebody has to tell me what the prognosis is. Solomon: That’s right. Comfort: Then it becomes important, because it’s not just cancer, but also when I get my class IV heart failure, you have to tell me the same thing, because my prognosis is the same as lung cancer reaching my brain. If I were going to take my beach chair to Key West if I had lung cancer, wouldn’t I take my beach chair if I had congestive heart failure? Paulson: Is it the obligation of the physician to be as honest as possible in terms of delineating what the prognosis is? Comfort: It’s important for the discussion to occur, and the way that we start that discussion is to ask. So it’s important to position yourselves in discussions with patients and families, not that the agenda is C 2014 New York Academy of Sciences. Ann. N.Y. Acad. Sci. 1330 (2014) 19–39 

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information giving, but the first agenda is to understand where the patient and family are and what their level of understanding is. With patients with chronic illnesses who really adapt very well to the limitations that they have, it’s fascinating that they are usually fairly accurate in telling you what their experience has been and where they are in their understanding of the disease process. When you frame it that way, then it’s a discussion about what they already know, or it is a gentle correction to their misunderstanding of how they feel. Paulson: Barbara, do you want to jump in here? Lee: The reason these discussions are so difficult on both sides is because there is this societal acquiescence to the myth that death is optional and never appropriate. If there’s any option other than death, that’s the appropriate option; death is never appropriate. That’s just not the truth. Sometimes a gentle, peaceful closure is the appropriate thing to happen. Once that’s out on the table, people can start talking about how to make this anticipatory and gentle, and when it’s time to take out the beach chair. Then all kinds of wonderful things can happen in terms of closure, comfort, and life meaning. But it can’t happen when you’re not allowed to acknowledge that the time has come—that death is appropriate now. Shemie: I agree with Barbara, but there are two factors that influence that decision. One is that there are many situations where doctors and healthcare providers are certain about the prognosis, but there are many situations where that certainty is not as clear and that uncertainty makes those decisions a little bit more difficult and confounded. The second thing is that the public perception of the capacity of health care and technology to prolong life or to save life is disproportionately exaggerated from the truth. Chris was quoting cardiac arrest survival rates that are true, but there was a study a number of years ago in the New England Journal of Medicine that looked at the way television shows give information to the public about cardiac arrest survival. They surveyed a number of TV shows at the time, including Chicago Hope and ER, and the survival rate from cardiac arrest stated on those shows was 70%. So the idea versus a less than—what did you quote there, Chris? Solomon: 1.8%. Paulson: 1.8% of out-of-hospital cardiac arrests? So you can understand why the public has these perceptions. And when we market—if I can say that—contributions to research and to what we do, whether it’s transplant or cancer care, there is a disconnect between actual prospects for recovery and survival versus what the public perceives. And then you juxtapose that to prognostic uncertainty in situations and technological capacity, and it’s fairly predictable why we have these discussions. Lee: If I could say a word on language, just very quickly. Physicians and the medical establishment bring it on themselves a little bit, even when they talk about resuscitation. Do you want resuscitation? Well, who would say No? Of course I want resuscitation! Why not say “attempted” resuscitation? Because an attempted resuscitation is all that can be offered, and 9 times out of 10—99 out of 100—that attempt will be unsuccessful. Solomon: I would go further because this is a good example of how we’ve designed the system to undermine our ability to really be clear about situations. With regard to do-not-resuscitate orders, the major way in which we do this is that you will get cardiopulmonary resuscitation; that’s the default, whether or not it’s likely to be beneficial to you. Paulson: What if the patient or the family has signed the do-not-resuscitate papers?

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Solomon: But they have—the default is that it’s going to be offered unless you say that you don’t want to do it. We could actually design a system in which that was reversed for certain patients—those where there’s not the prognostic uncertainty but where there is imminent dying. We could encourage clinicians to go to the patients and disclose that they’re not recommending cardiopulmonary resuscitation. Lee: Attempted cardiopulmonary resuscitation! Solomon: Yes, exactly! “To attempt this,” because they want to protect you from the burdens of it. Paulson: But isn’t one of the challenges here that you’re cutting against the grain of what doctors have been trained to do, which is to save life? Solomon: And cutting across the grain of American culture, which sees solutions in technology rather than in relationships and some of the other nontech ways we could design the social supports that people need. So we go first to a technological fix; that seems to be deeply engrained in our culture, and then we train our doctors that way. Shemie: But you want to live in a culture that has an attitude where technological fixes are important because the science and technology of health care has advanced profoundly to the benefit of many people for many years. We’re talking about the appropriate utility of those interventions when there is no prospect for recovery. But having said that again, in North America, the vast majority of deaths are preceded by a decision to stop or not provide treatment, including CPR and DNRs. These are discussions that occur every day and are—again, in the majority of cases—reasonable decisions made by reasonable people. But we have all been at the bedside with families who refuse to accept what you say and insist on the deployment of those interventions, either CPR or continuing life support interventions. And you’re right—CPR is very different than surgery, so a surgeon can unilaterally say, “I’m not going to offer this surgery to you because I think it’s not in your interests.” There is no recourse for that family other than to get a second opinion. But cardiopulmonary resuscitation is different; the default is to provide it because we don’t want to make mistakes of not providing it in situations where it can help people. Lee: It’s so interesting to hear physicians talk about the compelling train of aggressive, burdensome treatment that leaves the station because the family is pushing it. Families overwhelmingly will say, “No, we thought that was the only option. We thought this is all that the physician offered; the physician didn’t talk with us about palliative care,” and indeed that has been borne out. There was a study in the intensive care units of a number of hospitals that recorded family consultations of patients who had already been in the ICU for over 2 weeks and who had terrible scores that indicated they were overwhelmingly likely to die during the hospitalization; 70% of them actually did die during the hospitalization. They found that whether or not the physician talked about a palliative care option was completely unrelated to the diagnosis, the prognosis, the APACHE score, which is an ICU survival score, or the age of the patient; it was related to only one variable, and that was whether the physician believed that was the choice that the family or the patient should make. But there’s no right or wrong answer to the palliative option at the end of, for example, a cancer course. It has to do with the values and beliefs of the patient and their family members. Paulson: Just so I understand what you’re saying, you’re saying that there are many cases where the family has made it clear that they do not want these life-sustaining measures taken? Lee: No, I’m saying there are many cases where the family doesn’t know that’s even an option; they don’t know to raise their hand and say, “Is there a comfort option here? Could we be talking about comfort care for Grandpa who’s 95 and dying of heart failure?” C 2014 New York Academy of Sciences. Ann. N.Y. Acad. Sci. 1330 (2014) 19–39 

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Solomon: This is unspoken, but a lot of the goals that occur in these conversations, the ones that aren’t managed by expert palliative care physicians, the ones that are just a sequence of specialist conversations in hallways, are often to get the patient to discharge. Shemie: When I go to the hospital and I’m sick, I want to be discharged as soon as possible! So that’s okay with me! [laughter] Solomon: Yes; well, it’s not okay with me if it means that I may be going to be having brain damage from what I’m going to be agreeing to, or I’m going to get a tracheotomy and a PEG, and then be sent to the nursing home without having a conversation about what happens when I’m discharged. So one of the takeaways I would hope for people here is, if you’re in a situation where you have a loved one, where it is a very dire situation or you suspect it might be, put a little pressure on one’s clinicians and ask, “What’s the likely trajectory of the illness after they leave the hospital? Where do you think these choices are going to? What path am I going to be set down if I go this way versus if I go that way?” And give your clinicians a chance to acknowledge their own uncertainty about it and say, “It’s okay, Doc, if you don’t really know what the diagnosis is, but can you help me think through what these different trajectories are likely to be?” That might affect what you decide to do while you are there. Shemie: Again, in defense, I want to elaborate because it really depends on where the phase of your care is through the healthcare system. If you’re dealing with your surgeon, your surgeon is more likely to recommend surgery because that’s what they do. But in terms of intensive care life support and whether or not it should be started, continued, or stopped, the reality right now centers on families’ insisting on continuing and clinicians’ trying to stop. Historically it was true that it was doctors’ pushing the treatments, but that’s not what’s happening in any modern intensive care unit. If you look at studies anywhere—United States, Canada, Europe—what you said is absolutely true and that is what you want to be able to do is to make a decision in the interest of that patient based on patient factors—how sick they are, what their values are, what their prognosis is. But what you said is true—the characteristics of the physicians influence the decisions or the recommendations that are being made, and that depends on age, specialty, geography, and religion. There was a large study in Europe comparing northern and southern European countries based on the religion and characteristics of the physician making the recommendation for stopping treatment before death. The message was if you want no treatment in the intensive care unit, you have to find a Jewish physician from northern Europe, and if you want everything done to you before death, you’ve got to find a Greek Orthodox physician from southern Europe. It’s true that physician characteristics clearly influence the recommendations, and regarding how to distinguish those two in terms of public information and discussing with your providers, make sure you understand the perspectives of the person giving you the advice. Lee: Or insist on a comprehensive disclosure. That actually is the law in the state of New York, which is one of two states in the union that have disclosure laws that say that when a patient is terminally ill, the physician has a legal duty to reveal the whole compendium of treatment options. You shouldn’t have to press for a palliative care option. It should be laid out in front of you because it’s not the doctor’s decision; it really is your decision, and if you’re the surrogate decision maker, it is your decision. It’s not the physician’s to make. Paulson: Chris? Comfort: This is an interesting point because New York does have what’s called the Palliative Care Information Act, passed a couple of years ago, which says exactly that—if the prognosis is thought to be less than 6 months, it is the obligation of the physicians—and it’s interesting because it is not just the attending

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physician, but any doctor who deals with that patient during that stay in the hospital or nursing home—to have a discussion of offering resources of palliative care. We’ve been playing a trick on oncologists now for about 10 years; we have an application for an end-of-life facility with a length of stay of 26 days with cancer patients, and we ask the oncologists to predict the survival of their patients. It’s fascinating because we take care of cancer patients from the finest programs in the world, and so we look at the patients and divide the patient survival into quartiles; then we try to match the quartile that the patient survives with the prediction that the oncologist made. In fact, typically the oncologist is never right. So the question I have for you is, Does the oncologist underestimate or overestimate survival? Lee: Overestimates. Comfort: In fact, typically they will overestimate, and overestimates last year were about 250%, so a 6-week survival was 2 weeks, and 6 days was 2 days. It’s fascinating; we had 12 physicians who have worked for an average of 18 years with us who do only end-of-life work—that’s their specialty, it’s their business—and so we did the same thing with them. How long is this patient going to live? We looked at their predictions and matched them up to patient quartiles. They never got it right. Did they overestimate or underestimate? They overestimated by 150%. What we’ve come to learn is that it is a tricky business to take a look at an individual patient and have an idea of what a prognosis is. We’ve come to understand that most of our predictions of prognosis have almost nothing to do with looking at the patient. It’s fitting the patient into population data of survival, which makes it then very difficult because now you’re talking about having discussions about prognoses in very difficult situations. Take cancer, for example; the decline is significant and fairly predictable—obvious to the patient because of how the patient feels and usually obvious to the family. But when you take another fatal illness, heart failure, it looks like this: you’re good, you’re bad, you get to the ER, you get some Lasix, you’re good, you’re bad, you have 3 days, you’re good, you just don’t show up the next time—80% of the deaths in heart failure are sudden death. How do I have a discussion with a patient and family about a poor prognosis? Solomon: That one’s hard. Comfort: When I can’t identify the time of death because the method or the cause of death is unpredictable, I still have that obligation to give the knowledge of poor prognosis so that the patient and family has the opportunity to make the decisions they want to make. Paulson: I want to jump in here because we have so much to talk about still and we haven’t even touched on some of the issues that we have to talk about—physician-assisted suicide, for example. Barbara, I know you don’t like that phrase; you prefer physician-assisted dying. Now, legally, this is allowed in only three states in the United States. Lee: Right. Well, it’s an inaccurate phrase because suicide does not describe that rational end-of-life decision that patients are making. Under the laws where aid in dying is legal, specifically it is not suicide, and it doesn’t qualify as suicide in insurance policies. But beyond that, suicide is an irrational act; it has to do with mental illness. It’s not a medical practice. So to label aid in dying a medical practice with the terminology of a crime is kind of like saying, “Surgery, you might call it surgery, but I prefer to call it mutilation, and that’s a felony.” You wouldn’t call surgery mutilation or stabbing; that’s a crime. But there is a medical practice of surgery, and so that’s what we would call it; we would call it surgery. It’s the same thing with suicide, in that assisting a suicide is and should be a crime; you shouldn’t be goading or influencing suicidal people into self-destructive behavior. But people who are not about self-destruction but are actually about preservation of the integrity of the coherence of the story of their lives, and who do not want to slip into the final degradation of delirium, unconsciousness, uncontrolled pain, or some other thing that is abhorrent to them and that would qualify to them as a violation of everything that they stand for—that’s not suicide. C 2014 New York Academy of Sciences. Ann. N.Y. Acad. Sci. 1330 (2014) 19–39 

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Paulson: Can you give me a concrete example of this in the state where you come from, Oregon? What is allowed there in what you describe as physician-assisted dying that would not be allowed in most states? Lee: Recognized and granted specific immunities in Oregon, Washington, Vermont, and Montana are that a patient who is eligible, mentally competent, and terminally ill, can ask their physician for a prescription for medication that, if they were to take it, would cause a relatively rapid and peaceful death. Obtaining that medication, as it turns out, we know from 20 years of experience in Oregon, is the pivotal event that transforms the quality of life; people feel empowered; they feel relieved of anxiety about how they will die, how horrific it might be for them, and how traumatizing it might be for their family if they want to die at home. As it turns out, 30 to 50% of people who do go through all of those processes to become eligible to receive the medication don’t take it. They die with the medication under their pillow or in the refrigerator; they say that was the important thing—that they achieved control, they achieved comfort, peace of mind, and they go on to die of their illness usually in hospice care with palliative support. Paulson: Millie, I know this is an issue that you work on as well. What’s your take on this? Solomon: Obviously there are strong differences of opinion; we haven’t reached a consensus across the country—only in four states right now. There is a move that we can see and it’s going to come up in other states soon. But we know from Oregon that at the end of the day, aid in dying or legalizing assisted suicide is only of interest to a small number of people. It may be that as a community we decide we want to legalize this on a broader scale, but it’s not going to fix the way in which we care for people throughout our society. It’s going to be relieving for the people for whom it’s relieving, but that’s going to be a small percentage. What we have to do is think about how we’re going to redesign our entire system of care—to care for this huge aging population that we’ve got, most of whom are not going to turn to this as their remedy. We have a societal obligation to redesign the system so people are not terrified—that if they don’t have this medicine in their fridge that they’re going to die alone or in pain. This is not an acceptable alternative; it’s an obligation we have to redesign the system for the majority of people. Lee: I would say that in Oregon, one in six patients begins the conversation with their family. They know that they’re dying; they’re starting to plan for a peaceful death, and they have the conversation with their family. “Would you support me? I’m interested in this death with dignity thing”—that’s a lot of people, one in six. And the ability to take the taboo away from the conversation, putting, as we said, the appropriateness of the time of dying on the table, is an enormous benefit. The Death with Dignity Act does that. Solomon: Those aren’t the statistics I’ve seen, so I’m curious about who the denominator there is! Lee: This is from Linda Ganzini and Susan Tolle: one in six has a conversation with their family, 1 in 50 has the conversation with their doctor, and 1 in 500 takes the medication and dies that way. But it’s not just about the 1 in 500; the 1 in 500, you’re right, is a very small number. But 1 in 6—that’s a large number. Paulson: I’m guessing we’re going to come back to this issue maybe in the Q&A session! I do want to make sure we talk about organ donation, which is Sam’s specialty and which we haven’t even touched on in any detail. There is a reigning protocol called the Dead Donor Rule. Do you want to explain how this works? Shemie: It’s basically there as a moral and, in some jurisdictions, a legal obligation to make sure that you don’t harm a living patient by removing their organs or killing them, that somebody has to be dead before you remove their organs to benefit somebody else. Paulson: It makes sense, right? 28

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Shemie: It certainly does to me! [laughter] Paulson: Now does that inhibit the maximum use of organs that are made available for transplantation? Shemie: If you look at the inverted pyramid of everybody who is likely to die versus everybody who’s dead, you would say as somebody on the transplant side of things whose interest it is to provide transplants to people who are on the waiting list, who have a high risk of dying on the waiting list, if you’re going to inevitably die, why isn’t that okay to donate? If you’re going to inevitably die and you said you wanted to donate organs, why can’t we take organs before you’re actually dead? I personally have a big problem with that; that is a large gray area of practice. We’re talking about uncertainty of prognosis that we already have in the dying phase in terminal illnesses, and for me, the Dead Donor Rule is sacrosanct; it is the foundation of professional and public trust that we are going to try to save your life when we can; it’s only when you are dead, not maybe dying, that we will approach you to donate organs. The organ donation and transplant system will fail if there is no public trust; it is based on benevolence of people and the willingness to help, and so I am a strong believer in the Dead Donor Rule. The discussions that are out there are more of an academic debate than they are a real policy or practice debate. Paulson: But isn’t there a question about how we define death? What is the moment of death? Is it the death of the brain? Is that the determining factor? Shemie: I’m currently, in fact, working with the World Health Organization to develop international guidelines for death, and there is an evolution in what we understand, I believe. Historically, when this issue of brain death, or what is the irreversible and complete cessation of all functions of the brain, started in the late 1960s, it was very controversial; it was this new thing and was a result of advances in transplantation but more a result of advances of all these life-support technologies that keep bodies alive but can’t help change illness. But as time has gone on and technologies have continued to advance, it all is kind of converging into one singular definition of death; this is my own personal opinion, not a policy opinion. In the United States, there are two determinations of death: it’s either after your heart stops or after your brain stops. But we are converging with this advance in technology to center it on the brain. Everything that we are is related to the functioning of the brain, and when your brain completely stops working and will not resume functioning, that is effectively death, whether or not your body is supported by organ-support technologies. You arrive there because you have a brain injury that destroys your brain, or, in fact, you arrive there because your heart stops and no longer delivers oxygen and circulation to your brain—those are the two paths to go there. So, yes, it’s all about the brain. Solomon: There is a debate in the scholarly literature on the Dead Donor Rule, but no matter how that comes out, I don’t think it’s going to make a big difference in terms of the number of organs that are available. There is another distinction that people should know about, and that can actually be another resource for families who want to contribute. Most of the donations now of people who have died—and I’m not talking about living kidney donors, but among the deceased—are from those who have died by brain death criteria. But increasingly, we are opening the opportunity for families to decide to donate for people for whom there has been a decision to withdraw life support, and so you would say that that’s donation after a circulatory determination of death. They are not brain dead—they might progress to brain death, eventually—a family decision has been made to withdraw treatment and then after that, the family can be approached about donation. Right now, it’s a small percentage of the organs that are received that way, but that is growing. Many hospitals around the country have created policies for donation after circulatory determination of death, and as families become more aware of it, this is something that you can actually ask about. It’s directly tied to your comment [looking toward Shemie]; a very large percentage of deaths do occur as a result of a conscious decision. And if the timing is a conscious decision, it can create the C 2014 New York Academy of Sciences. Ann. N.Y. Acad. Sci. 1330 (2014) 19–39 

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opportunity to make the next decision that once we’re withdrawing care, we’re allowing the person to die, and we’d like their organs to be useful. That’s a new trend. Shemie: Yes, it’s a complicated issue; in fact, in the United Kingdom, almost 50% of their donors are donors in this way. There’s no question the potential benefit for transplantation is substantial. But it does raise the issue of this intersection of decisions to stop treatment, or decisions to assist dying, and how they may in the future intersect with the question of whether you can donate organs under those circumstances? Clearly, people with metastatic cancer are not eligible to donate, but certain people with terminal illnesses that are not cancer related certainly are. The next future discussion that’s not really out there yet is whether you can be a donor of your organs before you agree to either stop treatment and die, or receive a treatment to die as a living donor before you die, or take your organs as you’re dying. Those future discussions are going to inflame and confound the situation a lot more, and we’ll need a lot of sober thinking around it. Paulson: In a minute, I want to go to our audience, but before I do that, I want to ask each of you a question: If there is one policy or protocol change you could suggest, in terms of end-of-life care, what would it be? What’s the one thing that you care passionately about that we could do better? Chris? Comfort: We can do better with the foundation of moving end-of-life discussions to the generalist level rather than a specialist level. I’m not a specialist in palliative care, although everybody says I am. The discussions of prognosis are fundamental to what goes on between physicians and the patients they take care of—such as the patient with a great prognosis after a myocardial infarction at a young age from single vessel disease, to the discussion of a poor prognosis in someone who has metastatic cancer where you can anticipate that even with aggressive interventions at palliation with chemotherapy, the result is going to be death. Not that the discussion of prognosis has to be a bad discussion, but physicians and caregivers should start to look at all of their discussions about the care that goes on with their patients in terms of understanding prognosis, because it’s so fundamental to the way we set goals of care with patients and families about what we’re going to do as we move forward. Paulson: Barbara, what would you like to see changed? Lee: I’d like to see the attitude change so family members, the surrogate decision makers, in a time of crisis have the wherewithal and feel empowered enough to ask whether it’s time to talk about a comfort option? “Your dad, 93 years old, just fell, hit his head, and is bleeding into his brain; the prognosis is very poor; we want to put him on a ventilator and transfer him to the ICU; is that okay?” If a family is empowered to ask, “Is it time to talk about a comfort option? Is it time to talk about planning a peaceful death?”—so that a 93-year-old doesn’t board the train of aggressive therapy and have the train leave the station and then pretty soon he’s in an ICU and it’s 10 days later. Paulson: Millie, what would you like to see? Solomon: I would like to revisit a piece of the Affordable Care Act legislation that came out in the summer of 2009. It intended to reimburse physicians for the kind of conversation that Chris is advocating as part of their professional services. It came out for reasons that were inappropriate, in my view, and it would be a single policy change at the national level that could change the behavior at the local level. Paulson: Sam? Shemie: We didn’t get into this too much, and that is the issue of resources and the ability to sustain what we do. I love technology, I believe in science, and I believe in a singular dedication to advancing science because it does benefit. But there is massive cost, and if you look at the cost of end-of-life care in the 30

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terminal months of the person’s life in the United States or Canada, it is a huge proportion of the healthcare budget. We can’t, at the bedside as a clinician, make resource allocation decisions when we’re faced with a patient or a family; our default is to save life and provide that option. However, there needs to be, I believe, a real reflective discussion about what the financial capacity is to sustain this in our societies, given the demographics of the population and the exaggerated problems that we’re going to be talking about as people age further. There needs to be an honest discussion about the cost and what is worthwhile and what can be done versus what should be done. Paulson: Okay. It is time to hear from the audience. Audience member 1: When you talked about donors and when permission can be granted for someone to decide to become a donor, it didn’t come up that other cultures encourage people or basically have a default—where you are a donor in Europe. In China, where they have a terrible shortage, it’s because they have a belief in the body and how it should be treated. What is it about Western culture and North America that prevents people from donating—the opt-out option as opposed to the opt-in option? Is it surmountable, and is it our difference in perception that could change the way we define ourselves as donors? Shemie: What you’re talking about are countries like France and Spain that have presumed consent—it is presumed you’re going to be a donor unless you opt out. North America is different now; when we survey our public in Canada, it’s almost split 50/50 in terms of public opinion about whether presumed consent is consistent with Canadian values. But I would tell you that, in general, personal autonomy is a much greater value in North America than in the cultures that you’ve mentioned. That personal autonomy would go against any government-driven initiative to remove that autonomy. Certainly politicians in a superficial response, when they’re faced with the donation crisis and the insufficient number of organs, will suggest moving toward presumed consent? They’re going to try it in Wales after the rest of the United Kingdom decided not to pursue that. What we know, though, is that, before that policy change, investment in the donation system—personnel, public awareness, consent registries—in many countries has been very successful in increasing donation rates that compete with European countries. Paulson: Can you back up for a moment and explain how presumed consent works? Would the family or the person have to say, “No, you cannot harvest or donate these organs”? Shemie: The policy is you’re a donor unless you indicate otherwise. There are some countries who actually allow you to register your desire not to become a donor, but Spain doesn’t do that; Spain has the highest donor rate in the world. What they say they do is that regardless of the presumed consent legislation and the opting out, they provide the option to families to opt out; they always get some form of consent. However, presumed consent effectively reflects the societal perspective on the issue. Presumed consent means your society supports it in general. So they’ll say it’s not a significant factor; I believe it is. We’ve surveyed in our research group different countries with different consent laws; donation rates vary profoundly. In general, presumed consent countries have higher donation rates, but there are countries without presumed consent, informed consent, opting in, that have very high donation rates. You could look at Philadelphia as one of the world leaders in a country that doesn’t have presumed consent. So there are other ways to do it, but you tell me whether the public would embrace that in New York. Audience member 1: No. Shemie: I don’t think so either! Mildred: Right. The Institute of Medicine did a study on this several years ago, and their report said that they thought it was a very ethical framework, but one that the American public wasn’t ready for. We’ve C 2014 New York Academy of Sciences. Ann. N.Y. Acad. Sci. 1330 (2014) 19–39 

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mentioned autonomy; another factor is a lack of trust that we have in our institutions. We have a lack of trust in our government and in each other. And we don’t have the same sense of solidarity; we don’t even have the word solidarity, which is a framework and a principle that is invoked and is felt in many European countries. So it’s the other side of the autonomy debate. There’s still autonomy in presumed consent because you could say No; the individual is honored by being able to opt out. Paulson: What’s the fear? Is the fear that people will be declared dead and their organs will be harvested before they actually are dead? Shemie: Well, let me give you an example. Singapore went ahead and they had a low donor rate. They invoked a presumed consent, but they didn’t give a societal option, an easy societal option to say No. They didn’t say, “Okay, we’re doing this but if you don’t want to do it, register here.” They just made it a policy. What clinicians in the intensive care units were finding was that a patient was dying or going to die very shortly, and then the families were being informed that this patient was going to be a donor because they hadn’t indicated that they didn’t want to; families were then negotiating with ICU doctors to determine how they could get out of this because they didn’t want to do this. So there is the balance between trust of your governmental policy and fair balance to the societally beneficial goal of trying to provide transplantable organs. I want to make clear that I’m on the other side of the line; I’m on the dying/deceased donation side of the line, not on the transplant side. Audience member 2: I’m wondering if one of the pathways to change might be in clarifying in the public domain what palliative care, as I understand it to be, really is. I think it’s conflated in the public’s mind and also with physicians as being end-of-life care rather than quality-of-life care no matter what your serious diagnosis is—and that means relief of suffering, and physical, psychosocial, spiritual, patient-, and family-centered care, both within hospitals and at home. Palliative care should be introduced upstream; it’s supposed to run alongside conventional treatment, whether it’s curative or not; but once again, as a country, we don’t reimburse cognitive treatments and that kind of therapy where it’s time spent with the family, where it’s understanding their values, beliefs, and cultural sensitivities. Too often even doctors think of palliative care as strictly end-of-life care, when, if introduced earlier, the end-of-life conversations would be so much easier to have. Comfort: Yes, you’re exactly right. It’s fascinating to see how palliative care grew, and it grew really alongside of a relatively robust hospice presence in the United States. So the concept of hospice was a nonmedical one; since it was really started by nurses, it ended up being a home-based nonmedical service for end-of-life care. Palliative care is what I consider to be the medical industry’s response to hospice, but it is in the hospital. So we have relatively robust services now in palliative care that are hospital based but very little in terms of outpatient palliative care that most programs are able to actually muster in terms of disease programs. Even from a systems perspective, there’s a little bit of confusion not just on the part of physicians; there’s a bit of confusion on the part of palliative care about what it really is. But clearly in studies that look at introducing palliative care to lung cancer patients at the time of diagnosis, such as a study done in Boston, an increased survival was found in the population who got regular treatment plus palliative care compared to the group that got palliative care. I read that and asked, What is it that we do that increases survival for months in that population? I’m really not sure what it is, but it certainly says that we personally as palliative care experts have to come to a better understanding of what the services are that we are offering, where we offer them, when during the course of the illness we offer them, and what the real components are that make a difference in taking care of patients and families? Lee: I would say one cautionary thing; what I worry about is that the retreat of palliative care from an end-of-life context plays into death denial. If carried to an extreme where we never do talk about the 32

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patient’s dying, we never do share a short prognosis, and we’re just talking about having this palliative care option, we will rob people of the notice they need that it is time to put an end-of-life plan in order. Comfort: And that’s why for me, as I said, the one thing that I’m interested in having in every conversation is the prognosis conversation because it grounds me in terms of where I’m going, and it allows me the opportunity to be very frank and honest with patients and families about what’s ahead. Shemie: I think you need to rebrand, Chris! Palliative care has this image in people’s minds that we’re giving up and you’re going to die. I agree with the question from the audience, that, in fact, it’s a lot more than that, and it’s not just about relief of suffering before death; it’s relief of suffering during the process of treatment that may have a bad outcome. So you need to rebrand; you need a social marketer! Solomon: Yes! Lee: Branding as hope! You’re not going to die! We’re just going to make you feel comfortable! Shemie: You might die, but we’re going to make it comfortable for you! Audience member 3: What can be done about the very expensive cost of end-of-life care? Solomon: Steve, you talked about cost in the very first question, and we haven’t really grabbed a hold of it; thank you for bringing us back there, and this question brings us squarely there. One of the things that are driving cost in our healthcare system is that new technologies are being introduced without being properly vetted to consider their effectiveness and cost effectiveness; our Congress has even said that we’re not to even look at it. And even the Patient-Centered Outcomes Research Institute, which will be doing excellent research, is not funding data collection on cost. Paulson: Can I push you on this for a moment? Suppose we were to acknowledge what this end-of-life care really does cost. We look at the numbers and say that to sustain this person for another 2 months is going to cost this much. What changes? If we actually take that information in, what would be changed in terms of how doctors actually care for their patients? Solomon: We might decide that extremely expensive chemotherapeutic agents that bring only very marginal benefits that may extend life a couple of months are not worth it. Some institutions are actually making those decisions on their own because we’ve failed to do it as a community. That’s one example where we might decide that it just really isn’t worth it to have . . . Lee: . . . less than a 50% chance. Solomon: Or way less. Lee: Or a 20% chance of prolonging life for a month. Solomon: A tiny amount of time. Comfort: Some of that data actually are already available. It was interesting that we had done some work on the use of growth factors, such as erythropoietin, and those that keep the blood count up in end-stage cancer patients. It was very common to have these kinds of drugs used in the late stages of cancer treatments or the life of the cancer patient. Joanne Lynn, who did the support study, which is a seminal study published in 1995 about end-of-life interventions, is looking at Medicare claims; she called me and said, “I’m looking C 2014 New York Academy of Sciences. Ann. N.Y. Acad. Sci. 1330 (2014) 19–39 

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at the use of growth factors in cancer patients, and it’s indicated post-chemotherapy, but I’m never seeing it given during chemotherapy; I’m seeing the charges sent to Medicare 6 months after chemotherapy, which in most of these patients’ life spans was late in the disease course.” I had commented to her that we had looked at the experience of using erythropoietin or EPO and we couldn’t show a benefit in these patients. It’s an ungodly expensive intervention. Now, nobody does that anymore because the FDA came out with an advisory that the use of EPO decreases survival in solid tumors, and so no one gives growth factors in this situation. But we haven’t gotten used to, especially in end-of-life care, critically looking at the interventions that we give to see if there is a benefit. If there is a benefit, can we justify the clinical use of the medication for the patient’s benefit? And I haven’t even gotten into the cost issue yet. So it’s out there and it is searchable, it’s understandable, but it requires a tremendous amount of interest to collect the information and start looking. Lee: One of the projects that we’ve undertaken is building a coalition to battle unwanted medical treatment, treatment that is clearly in violation of a person’s wishes. If they had been alert and had been able to get an informed opinion about what it entailed, they would not have consented to it, and their advanced directive clearly documents that. Yet, their advanced directive was violated—charges added up; sometimes those charges are many hundreds of thousands of dollars. Currently, the Centers for Medicare and Medicaid Services doesn’t even ask if this treatment comports with the patient’s advanced directive. If we could just put that kind of screen in place, would the patient have consented to it? Did the patient in fact try to refuse treatment such as this in advance and that attempt to refuse failed? Was this unnecessary, unwanted, and never should have happened? It could be what Medicare calls a “never event”; they’re not going to reimburse for it. Paulson: We’re starting to run short of time, so I want to ask Millie if she has a quick comment here? Solomon: I want to say that I don’t think it’s a good idea to leave the room and think that end-of-life care is the major reason for our healthcare costs’ escalating. It’s a significant part, but most people in the room may have heard the statistic that about 27% of Medicare costs are due to the last year of life treatments. But that has been a steady statistic—27%, for a long, long time, even while the growth of healthcare costs has continued to go up. So there’s a difference there, and it doesn’t have to do with our end-of-life care. We know that palliative care studies show that there’s the potential for survival; there is also the potential for cost savings, so it’s a part of the picture. But we have escalating healthcare costs for a lot of other reasons, and one of them is the introduction of these technologies without any comparative effectiveness studies. The other reason is our fee-for-service system in which we are rewarding and paying by piecemeal—basically piecework. The more procedures we do, the more a healthcare organization’s revenues come in. So that’s also shifting; we’re going to be designing things that have capitated payment reforms, but as long as we have a fee-for-service system, there’s an incentive to do more things. Audience member 4: I was fascinated by the distinction that I heard Barbara draw earlier between the apparent support for physician-assisted death in the cases of terminal illness as opposed to the disdain for suicide in the case of mental illness and some other situations. I’m curious if the other panelists could comment on some of the social, ethical, and potentially legal implications of drawing that line between when physician-assisted death or suicide, which I’m personally in support of, would be appropriate versus when it may not be appropriate. Barbara, you’re a big supporter of it; you were drawing those distinctions there. Solomon: It’s not appropriate when people are clinically depressed, for example. There are mechanisms to ensure that the person who is requesting aid in dying does not have clinical depression. It would, in my

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view, be malpractice to begin to proceed down that line unless somebody really tried to figure out whether that was going on. So that’s one difference. Paulson: Can you actually draw that line, though? To someone who is terminally ill, you’re going to say, “Oh, sorry, you’re clinically depressed so you can’t end your life?” Lee: You can draw the distinction, and it’s a clear distinction between situational depression that is a reaction of sadness—I’m sad, I’m losing everything, I’m losing my life. Sadness would be appropriate. That’s not pathological. You can draw the distinction between that and clinical depression that is a mental illness that impairs judgment. So you can be sad that you’re dying, you can be experiencing appropriate grief, but not have impaired judgment, and that’s a relatively easy distinction to draw. Comfort: I’m fairly confused about the whole issue, only from the experience of taking care of patients in a very particular phase of illness. In my experience with patients who are terminal patients—and I’ll define those as patients who probably have 6 to 8 weeks to live—a very high percentage of those patients have profound cognitive impairment, and a very high percentage of those patients are delirious, which means that the time for that person to have had discussions about care wishes and a cognitive discussion about prognosis is long gone. Regarding the idea of someone having the capacity to make a decision about aiding in death, most of the patients that I run up against and am taking care of are walking through a very difficult journey and really have lost the capacity, in my mind, to enter into that decision. This is a really complex issue about when we talk about this physician-aided death. When in the course of a patient’s existence would this occur? We would be shocked to find out that we’d be talking about decisions that patients are making with an estimated survival of months before they’re going to die. For me, it’s a very difficult situation when I recognize that the typical patient with these illnesses, which are chronic illnesses that lead to a predictable death, often has a very, very difficult time with cognition and problems of delirium. Solomon: The other thing we haven’t talked about is the huge population of people with Alzheimer’s that we’re going to have as we’re aging. They’re not candidates for aid in dying either because you have to have the capacity to make this decision. Only capacitated people can be candidates for this. That’s part of the reason I was saying I don’t think it’s going to be the major solution for us; we’re going to have millions of people with dementia, and, again, we haven’t talked very much about how we build long-term care facilities that can support the needs that our aging population’s going to have. We’ve talked so much tonight about the acute care setting, but building the social supports for the frail and demented, our parents and ourselves, in the community is going to be a huge challenge. Audience member 5: As technology advances, do you think it’ll be possible to loan organs? [laughter] Lee: To loan organs? Shemie: That’s a great question. There are things that are being done right now; the University of Toronto, for instance, has a very aggressive and innovative lung transplant program. Normally, a program relies on the urgency of somebody who has died and wants to become a donor, and they need to remove the organs quickly and transplant them quickly—there are a number of things that happen to organs that make it hard for them to be used or to work, and therefore they’re discarded if they can’t be used. The lung transplant program at the University of Toronto instead does something called ex vivo lung perfusion: they take the organ out and simulate conditions as if the organ was in the body, meaning it is provided circulation of blood and oxygen, and it is given treatments to repair the function of the organ in a laboratory for 24 hours prior to transplanting it. So the idea of repairing organs and resuscitating organs outside of the body is a big source of potential to improve the availability of organs. The other big question is whether we will ever get to the point where organs can actually be grown in a laboratory? Right now, we can grow simple C 2014 New York Academy of Sciences. Ann. N.Y. Acad. Sci. 1330 (2014) 19–39 

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organs—something like a bladder or just a container—but there are fascinating experiments in animals where—and it’s a little bit complicated—you can use the structure of an organ and repopulate it with stem cells that basically recreate the organ. That future is promising. But can you rephrase your question again, because I’m not sure I even answered it! Audience member 5: If there’s an 80-year-old man and he doesn’t have long to live but I know I have long to live and he needs a heart transplant, if they could put me into stasis for a certain amount of time until the man dies and they just give him . . . Shemie: . . . And then you take it back! Audience member 5: Right. [laughter] Shemie: I don’t want you to sign that consent form! [laughter] I’m just telling you now, I can’t explain it, but don’t sign the consent form! It’s a great question, but the answer is No. Audience member 6: I’m going to end on the note where we began and talk about patient–physician communication. If we step back—and we’re now talking about the physicians—I’d like to hear what you think about how we should train our interns, our residents, and our medical students so as to change the culture and help with this dialogue. Solomon: That’s a great question. Comfort: Maybe the way to start—and this is very specific to the work that I do, so I don’t want to answer outside of that—is by humbling ourselves as physicians, at least in the work that we do, to understand that the greatest benefit that we do is witness. It’s not treating, it’s not a medication, it’s not an intervention—we witness. It’s amazing to me to watch patients as they near the end and as they’re dying. Rather than reaching out to the ones that are closest to them like family to tell their story, and to have someone around who can observe and witness the significance of not only the events that have happened, but what has gone on before, it ends up often, if the physician is open to it, to be the physician—a total stranger. And it’s a humbling experience to realize that I can’t say everything’s going to be all right, because it’s not going to be. And I can’t make promises that I can’t keep, but the promise I can keep is to sit and to listen and to experience that, and then I can bring all the rest of my armamentarium with me. If I’ve started with witness, then I’ve begun to truly know who I’m taking care of. And I can personalize that experience so that the whole way that I do things no longer is at a distance—it no longer is separated from them, but I walk alongside them. That changes not only the way you communicate, but it changes the decisions that physicians make. Lee: I don’t think physician education is the answer at all. We had a 10-year period from the time the SUPPORT study came out to 2005, when Robert Wood Johnson, Open Society Institute, Grantmakers in Health spent about $350 million on physician education, and it still is tremendously lacking. We don’t actually have any measurable improvement in patient–physician communication for all of that. Physicians and the medical community are reactive; they’re not proactive. And what they react to is changing expectations in the environment of their patients. If you talk with physicians who have had this transformational experience and they’re now good communicators, it’s because of something they learned from their patients. It’s like the natural birthing movement: it’s not because obstetricians decided they were going to change the way they practiced deliveries—that they were going to create home-like environments that were, for example, very family centered, much more natural, with less anesthesia. No, it wasn’t that at all. It was because women said, we are tired of this high technology, of this depersonalization of what is a natural life process. We want to reclaim birthing. And they did it in such a way that the medical 36

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establishment responded, and now we have providers competing on the basis of how home like, how family centered, an environment for birthing they can provide. It’s going to be the same thing for deathing. Paulson: Deathing! I just learned a new word here! Lee: We have to change the expectations of the people and pull the medical community because you can’t push them. You’ll have to pull them because society expects a more natural, more home-like, familycentered, patient-centered dying experience—that’s what we demand. Paulson: Millie? Solomon: Following on that, what are the things that patients and families can do to encourage that kind of response in clinicians? Partly it’s giving the clinicians permission to share their uncertainty—to say, “Look, I realize we might not be clear about the prognosis.” We can then say, “I want you to lay out all of what you’re thinking; I’m not expecting you to tell me black and white answers.” Many clinicians don’t know they have that permission, and patients and families can actually give it. Along that same line, there’s not just uncertainty but an attempt to help me understand what might happen after I leave here. There are a lot of things that we can do as patients to encourage the sort of conversation that we’ve been talking about, and that speaks to the comment that we heard earlier about contemporary issues, where families are often demanding things and the doctors do not really know how to handle this—leading to a conflict about that. That’s another thing that the public can take hold of and say—that more technology is not necessarily in your loved one’s best interest. How can we be more sophisticated in our understanding of how we take great benefit from the amazing advances in science and technology that are breathtaking, that we want to be doing, and minimize some of the burdens that come with that? That’s going to have to be a voice that comes from the public and that creates more trust in that clinical encounter. Paulson: And, Sam, you get the last word. Shemie: I’m an intensive care doctor who works in the Children’s Hospital, and families of children who are sick and might die aren’t ready for deathing. So it’s a little bit different. But I can tell you in my experience, people who manage death regularly, intensive care doctors and palliative care doctors, develop very good communication skills in managing families and trying to address where they’re at in their communications. But the reality is that the vast majority of doctors in the healthcare system do not have experience in managing death and dying, and so to expect them to have communication skills in this area is naive; it’s not going to happen. And so what I hear throughout all of this discussion is that, currently, end-of-life care services are inadequate in society, either in the hospital or at home, and investment in end-of-life care services for those families who require it perhaps is one of the things that we need to do. Communication comes from experience, and if you don’t talk to families with dying patients, you don’t develop it—so don’t expect it. Don’t expect it from your cardiac surgeon; don’t expect it from your brain surgeon. What you want from them are good hands and good decision making. Paulson: We have many more questions, but no more time. Thank you so much to the panelists.

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Commentary Christopher P. Comfort Calvary Hospital, New York, New York I must admit I was a bit taken aback. You see, the evening seemed to have been almost magical. The venue was majestic, with the stage situated to look out over the Manhattan skyline, lit up in a glorious light that bathed the plate glass vista in an almost soothing glow. The panelists were larger than life, each accomplished in a particular field, full of insightful information and able to communicate convincingly about a variety of subjects appropriate for the evening. The moderator was friendly, provocative, and delving in a collegial way. The topic, Prolonging Life: Legal, Ethical, and Social Dilemmas, seemed broad yet manageable. What an opportunity, I thought, to bring us to a consensus regarding a difficult topic, exploring all sides of the experience of living and dying for patients, families, caregivers, medical professionals, and interested ancillary participants. Upon rereading the transcript of the evening’s discussions, I was encouraged by the camaraderie of the experts, the ebb and flow of discussion that was friendly, almost conciliatory: recognizing, discussing, and incorporating distinct opinions and positions into an agreeable whole. And then the discussions ensued. Day after day I heard the comments of those who were present for the event or saw the evening through the miracle of YouTube days to weeks later, reacting to what they had seen and heard. “You know,” she remarked, “I do not know why anyone talked of giving up. I have two relatives, both doctors, both elderly, who had serious illness. They did not give up and they recovered; they even went back to work. Why did you all talk of giving up?” “How could any of you know what anyone would think of death. All of that was so personal and individual. Everyone goes through that kind of stuff in their own very personal way,” commented a middle-aged man with thinning hair and wire-framed spectacles. “Assisted suicide—horrendous. Why would any of you even talk about such a thing,” asked one of the pastoral care providers at work. “Medicine has progressed with amazing strides that have positively affected thousands of very sick patients. You made it out to be a profession of us who fail,” I was rebuked by one of my very esteemed and prominent mentors. It seemed that, instead of coming to a consensus regarding the topic of the evening, we had merely identified and polarized a number of thoughts, opinions, beliefs, and fears that had existed long before we had taken the stage. So I had to read the transcript of the evening again, to see if I could come to recognize any consensus or harmony in the discussion of the evening. And slowly, ever so slowly, there emerged a framework for building a commonality among not only the speakers, but also among those who have experienced the issues of prolonging life and facing death. What emerged was a list of common tenets—the foundation of an agreement between parties that looked like this:

1. We will all face death. Death is as inevitable as birth. The event will come to us all, although we are unaware of when and how. As birth leads to living, living leads to death. But before death comes the dying, that process, sometimes short and sometimes longer, that leads up to the final event that ends our appreciation of existence. But dying comes with a history of living, with a perspective of the process and event that is dependent upon that which preceded it. As modern medicine has progressed, we have come to recognize illness as a story, and a chronic story as well. Chronic illness may last weeks, months, and even years. Chronic illness is the story of deterioration, both physical and mental, whether the illness is identified with the name heart disease, heart failure, emphysema, diabetes, kidney failure, stroke, cancer, or any other common diagnosis we recognize as terminal. So dying is a story of that deterioration and what effect that has on us as sufferers and our loved ones as interested observers. 38

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2. We would prefer not to be dying. While the event of death is an intellectual construct (since how will we know once we have experienced it), the process of dying is real, experiential, and reflected upon until the end. Most of us would prefer not to have to go through the long, drawn-out process of deteriorating that leads to death. So promises of interventions and treatments that will “cure” or at least delay our experience will be welcome and even temporarily therapeutic. 3. If we cannot avoid the process, most of us would prefer not to have to fully experience the negative (uncomfortable, painful, or fearful) aspects along the way. So talk of mitigation and palliation will always have a place in our wishes for care and be described as treatments of chronic and incurable illnesses. 4. We never want to lose hope. But what is hope when talked of in the presence of dying? Perhaps hope is the continued belief that one is loved, valued, or treasured by those around us, so that the journey of dying is a journey we never have to take alone. These tenets of the journey of dying would be a guide for caregivers, medical and lay alike, in our attempts to care for and treat dying patients. We would always search for ways to delay the deterioration associated with dying with “cures” and “cares” for the chronic conditions that define the process. This means significant discussions of diagnosis, prognosis, and honest appraisals of benefits of all interventions and treatments. When that deterioration cannot be delayed, we would offer care that addresses the symptoms, that assures effective pain management, and that masks the uncomfortable experiences of the journey. When in the trajectory of a chronic illness those discussions should take place, at what degree of debility such conversations are understandable and meaningful for patients and families, and careful attention to avoiding “promises made” for interventions and treatments are issues still prevalent in providing palliative care for patients. When the end draws near we firmly resolve to be present, even until the end, so that we always witness, never abandon, and remain steadfastly to provide the human touch that is hope. This is a promise made by all of us around a dying patient: family, friends, caregivers, professionals, as we all pause in hushed respect to witness the event as sacred as birth, the event we term death.

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Prolonging life: legal, ethical, and social dilemmas.

The ability of modern medicine to prolong life has raised a variety of difficult legal, ethical, and social issues on which reasonable minds can diffe...
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