 My name is Peter Angelos. I am one of the other associate directors here at the Ethics Center, and it's my pleasure to welcome you to the afternoon part of the program. Mark has reminded me to remind you that there is a family party at the DKAM second floor at 6 o'clock after the session's end today. So if any of you don't know where DKAM is, DKAM, of course, is the Dutch Eswa Center for Advanced Medicine. And if you don't know where that is, just ask someone and we'll direct you there. So this afternoon, we've got a number of excellent speakers to address the topic, what are the goals and what are the limits of palliative care? And the biggest challenge for me is to try to keep us running on time, because Mark has said that that's my job. So I'm not sure I'm going to succeed, but I'm going to ask if everybody would try to keep your remarks on time. And I am going to go ahead and introduce briefly each of the speakers so that they can then come right up in succession. And then at the end, we'll have time for some questions and hopefully even answers. So the common theme for the speakers this afternoon is that they are all graduates of the Ethics Fellowship here, with the exception of Dan Sulmezzi, who we're going to let him talk anyway. So let me just introduce him. Oh, he didn't go to Princeton either. That's right, so. So our speakers in order of their appearance, Lori Lickholm, who is the Sydney G. Page, junior MD Professor of Bioethics and Humanities at Virginia Commonwealth University. She's also a faculty member associated with the Project on Death in America and is the Fellowship Program Director for Hospice and Palliative Care Medicine Fellowship at VCU School of Medicine. Second, Far Kerland, who is Associate Professor of Medicine in internal medicine here at the University of Chicago and a faculty member of the McLean Center and is co-director of the Center for Medicine and Religion. Third will be Susan Toll, who is the Cornelia Hayes Stevens Chair and Director of the Center for Ethics and Health Care at Oregon Health Sciences University. She's also a professor of medicine in the Division of General Internal Medicine and Geriatrics at OHSU. Fourth, Batting Cleanup, to use the same analogy, is Sabi Fedson. Sabi is the Associate Professor of Medicine in the Division of Cardiology here at the University of Chicago and is also a faculty member of the McLean Center. And last but not least, Dan Sulnazi, who has already been up at the podium, but many of you know came to the university just recently in July of 2009. He has a joint appointment as professor in the Medical School and also in the Divinity School, which is very unique. Dan has recently been named as to the Presidential Commission for the Study of Bioethical Issues. And in 2009, received the Pellegrino Medal by Samford University. The same year, he received an honorary degree from New York Medical College. And Dan's written many books and articles, and most of us know him well. So without further ado, Laurie. Well, good afternoon, everybody. So I am gonna, my presentation is postcards from Palliative Care. And I thought it would help to start things off and get people thinking about palliative care. And I'm from a very clinical program. We do a lot of research and clinical work, as well as education. It's a pretty prototypical program for an academic medical center that has had a pretty old palliative care program. R has started around 1985 and we started a unit in the year 2000. And this is, I think, quite typical of what, here we go, of what happens to a lot of, has happened to a lot of centers that started on the early side, where they just started with a really small group of people and a few beds and maybe did 200, 300, 400 admissions a year. And now ours has grown quite big to doing about 500 missions, still to 11 beds, and 1500 inpatient consults. And we have a lot more doctors and nurses. We even have a bone marrow transplant doc who's palliative care boarded. And now we have four fellows in our fellowship program. And I wanted to sort of give you an idea of some of the great things that are happening in palliative care from both a theoretical and philosophical and ethical standpoint and also a little bit practical stuff as well. And the first thing I wanted to talk about is my, the thing that's closest to me and that's education. And it's just amazing that just over the course of 10 years the fellowship program in Hospice and Palliative Medicine has been accredited and accepted by the ACGME. There are over 75 fellowship programs all over the country. For nursing, there is a huge push to educate nurses in palliative care from nurses of every stripe with this fantastic LNIC program. Epic, which is the education of physicians on end of life care, started with the AMA about 10 years ago and just focused on physicians in general. And now there's Epic O for Epic Oncology, there's Epic E for Epic Emergency. And so education in palliative care has just gone crazy and it's really exciting. The next thing that I think is really important is thinking about where palliative care is going. And politically and practically speaking, palliative care really started way over here and actually nobody even really called it palliative care that much. It was called end of life care. And that's become really not a great way to describe palliative care. And the lexicon has sort of moved into improving quality of life for people with serious illness. So people don't really say end of life care is much anymore because it's probably because of death panels and things like that. And it's really preferred that the end of life care part is subdued a little bit. And I have really an argument about that with myself, with a lot of other people because I think we still have to talk about end of life and we still have to say that that's what we do. But that's what the lexicon is. So it really started down at the end here, downstream and it moving upstream has been really important. And so it's much more all-encompassing. And so now we say we can give palliative care any time it isn't just for end of life anymore. It is for any time in a person's life when they have a serious illness, when they have symptoms to alleviate, when they have to have difficult conversations and discussions and goals to clarify. And even thinking about this study of patients who were early, say breast cancer patients who were getting treatment and may never even step inside the inside of a hospital but they were having very serious symptoms that interrupted their lives. And palliative care could step in and do a lot of symptom management to help people get back to work, get back on their feet, all kinds of things. So moving upstream from this death and bereavement and all the way up into the curative care area is really important to the growth of palliative care. I wanna show you how much palliative care programs have grown and hopefully this hyperlink will work. This is from the Capsi website, the Centers for the Advancement of Palliative Care. And this is a little map that you can pull up and see how well your state rates. And I think this is, oops, this is Illinois, which gets a C. Now a C means that it's not a B or an A. And it means that if you are in some parts of Illinois, you don't have very good access to palliative care. So if I go to say Dr. Tolstate over here, it gets a B. And then there's a few like Vermont that get an A. So I just wanted to show you that, but you can see that all over the country that palliative care is really taking hold and it's really exciting. And there's actually, I'll show you the top 10 because I think I'm okay on time. So I mean, Vermont is so tiny. It's not really fair. But you can see that these are the ones, the top 10 that got the A's and B's. So we still have a ways to go. Another important area is palliative care in the emergency department for so many reasons. And the analogy is sort of this, like the preventive medicine paradigm. While others are busy pulling bodies from the river, someone has to go upstream to stop people from falling in. To the extent that palliative care is currently busy rescuing hospitalized patients from under-treated symptoms and inappropriate treatment, someone needs to go upstream to the emergency department to change systems of care to ensure better care right from the beginning. And I think that's a really exciting place for palliative care to be. And we're seeing increasing acceptance. There's several journal articles this year that came out about the emergency department and palliative care. It's really interesting because often when we're called down from the palliative care unit to see a patient, we meet the people from the ICU seeing the same patient. And clarification of goals discussion happens right there. And often there is a huge decision point between a patient going all the way to palliative care or all the way to the ICU. And those are really important goals of care conversations. And we're now getting more fellows from the emergency medicine residency programs. We've had two so far in our program. They're learning a lot more pain and symptom management and often able to send patients home when before they had to admit them. And everyone knows about the throughput problem in the emergency departments and how everything gets blocked up. So that's a really important place for palliative care to be. And I'm just gonna say a few words about pain and symptom management. I know this is an ethics discussion but always alleviating pain and symptoms is the charge of everyone in medicine. And I just wanna say that there's a body of palliative care research growing and we're working more and more with all these wonderful subspecialties such as ortho and radiation oncology and interventional radiology and anesthesia who are really representing themselves as palliative orthopedists and interventional radiologists. And it's really exciting and the things that we're doing aren't just turning the morphine up and down but they're exciting cutting edge types of treatment to help people with pain and symptom management. And I'm just gonna run through these. All kinds of blocks including, this is our old stand by the celiac plexus block for pancreatic cancer pain but we're using blocks of all kinds and putting our heads together with the interventional anesthesiologists and radiologists to figure out how best to treat somebody's pain with a block. Same thing with implanted pumps, intrathecal pumps using all kinds of different medications that we have never used before that are really working well to get to that sort of five to seven percent of patients who you just can't get to with just intravenous opioids. The draining peg tube is a wonderful answer to the problem of somebody who's got especially cancer that's just blocking their whole abdominal cavity. And even though they're not able to really take food in for nutrition they're able to enjoy food and then they're able to drain it from the gastrostomy tube. Nebulized fentanyl for dyspnea works very well. This is one of those upstream treatments. Magnesium for hot flashes, fantastic. Methyl naltrexone for opioid induced constipation. And this is a new one, it's called the scrambler. It's a new technology out of Italy and it actually is placed electrodes near where the pain is and it somehow scrambles the nerve impulses and blocks the impulses from getting to the brain. We know that if you get a palliative care consultation you will get symptoms improved very, very quickly and this was demonstrated first at Mount Sinai on a thousand patients and this is over the course of about three to four days from the initial evaluation to final evaluation we just see these pain, nausea and dyspnea just fall and that's when you get someone who's only looking at the symptoms and not looking at how to treat the infection and how to discharge the patient and all those other things but is just focusing on the patient's symptoms. And then we repeated the study at VCU and saw the same thing. Difficult discussions and hope. We've done a study, I know it's only on 27 people but it's beginning to look like with other studies that have been done that if we give people really good prognostic information even though it's not very happy prognostic information patients with stage four cancer and tell them what their response rate really is going to be to that third line chemotherapy and what their survival time really is going to be that it doesn't take away their hope. Everybody's always afraid that they're gonna take away their hope by telling them these difficult things and this is a study where we did show people with stage four cancer these charts and we went over them with them and showed them what their likelihood of survival would be and some other things, what their response rates would be, et cetera. And then we did the hope, the Hearth Hope Index study with them and we found that the values really didn't change much before and after the educational intervention. And Holly Prigerson in another study found that patients who had a discussion about death were not more anxious or depressed and had less aggressive end of life care. So I think we're really, a lot of knowledge is accumulating about really feeling like you can sit down with a patient and talk with them and not take away their hope because I think people are really afraid to do that and I can tell you among my oncology colleagues, several people say, I just can't do that part. It just makes me feel too uncomfortable and I'm just sure I'm taking away their hope. Two studies came out this past, or two articles came out this past year that I think were really, really important to palliative care. The first one was in the New England Journal, the randomized clinical trial of usual oncology care versus usual oncology plus concurrent palliative care. And that was done in patients with late-stage lung cancer. And they found that in 151 patients with non-small cell lung cancer, stage four, that the ones who got palliative care along with usual care, they lived three months longer. That was really exciting, but they also had much better quality of life, which was I think really the take-all point. But the live longer part was interesting too. And then the other article that came out that if you haven't read it, I would encourage everybody to read it was this article that was in The New Yorker by Atul Gawande called Letting Go and it was written from his viewpoint as a surgeon and he was one of those people who cannot talk to people about their dying. And he talks a lot about that and he also talks about sort of the state of end of life in this country and he tells some really compelling stories about patients. And I just wish everybody would read it. I think it will really educate both the lay public and also a lot of the medical providers about what palliative care really is and I think it was really good. And then finally, ethics and humanism. I know everybody sees this melding of ethics committees with palliative care and we see family meetings, the fellows always say that that's their procedure, that bone marrow is the oncologist's procedure but the palliative care fellows think of family meetings as a procedure and people are getting better at it because we're teaching more people how to really talk with patients and their families. Goals of care discussions are clearly more refined and they're taught to everyone and I know we're gonna hear about adoption of the post, the post, the most, all those different acronyms for that very important process. And pediatric palliative care is finally starting to see the light of day because I think that that has really been kept tamped down. People are really, if they're afraid to talk to adults about dying and talk with adults and talk about adults dying, they're even more afraid of the kids. And we've recently gotten involved in donation after cardiac death as being the people who start to finish with the family and the patient. When they go into the procedure and then if the patient doesn't die within the 90 minutes that the Institute of Medicine sort of proscribed, then the patients come to palliative care with us and we know the family and I think it makes it a little bit easier. I think the biggest challenge is to talk about the relevance of limiting aggressive supportive medical care both in terms of wasted dollars and potential or actual harm without crossing the line into being nothing but agents of rationing either at the policy level or at the bedside or being perceived as such. When this was reported back in 2004 and palliative care was seen as in some ways a way to save money because you were getting patients out of the ICU more quickly or they weren't going to the ICU more quickly there's really an uproar about that and everybody said well is palliative care is that all it is? Is just another way to save money and I think that is some of the ways that brought about this whole death panel thinking and so we have to be really careful to say that palliative care is right and it's correct and it's the right thing to do because it's the right thing to do not just to save money but it really does save money as well. The high hanging fruit are still out there for me it just kills me because the oncologists are often the people that don't believe in palliative care or they say oh I know how to do that I know how to do palliative care. Media, politics, death panels, big challenges palliative care like I said is not just end of life it's not hospice and it is what they say palliative care is to improve quality of life for serious illness and that sort of party line. So I just want to say to do good work get a lot of rest and stay warm. Thank you. I'm struck, Laurie, that we are at the University of Chicago in 2010 right about where you were in your 2000 in terms of the size and capacities of our palliative care so it's encouraging in a way we have a lot of we have people and models to follow and building out that capacity. I am a palliatrician and by clinical practice and some of the cautions that Laurie mentioned toward the end have continued to trouble me in my experience within the world of palliative care and it is a world as most sectors like this are that has its own kind of sort of ethos and it seems to me that one of the tensions that is stated explicitly in the title to this panel is what is it we're really trying to do? What are our goals here and what if any are the limits of those goals and I think that there are real dangers for the field not only in being perceived as a group who are agents of institutions or the state to save money which is obviously a temptation but also that we can I think slip sometimes toward the hubris and the pretense of thinking that we are as a group able to kind of master and make not so bad this thing death. We can make it natural, we can make it comfortable, we can make it dignified, we can make it good and then it won't be such a threat that it's been to people who have not kind of come to that understanding and that we are in other words I think always have the tension of moving from those who seek to relieve difficult symptoms of pain, disney and on and on to those who are trying to relieve as the philosopher Gerald McKinney put it to relieve the human condition and one of the places that's really that I think the focal point of ongoing dispute or concern in this area is the question of what we're after and what our limits are when we sedate patients. Last year at this conference, this was my title slide, my talk and I got to do what I love to do at the conference which is actually try to reason about how we ought to practice. That is what I love to do but it's not my day job. My day job is to actually measure what physicians think they ought to do with their practice and what they say they do in their practice. But the talk had been stimulated by a paper written by Quill and Tim Quill and Bernie Lowe, Dan Brock and Alan Miesel in which they argued that we need to think of we need to clarify our terminology and recognize that what they call palliative sedation to unconsciousness is a part of standard palliative care. It should be recognized as part of standard palliative care and treated as such and they distinguished helpfully I think between proportionate palliative sedation which is the uncontroversial practice that's been affirmed by virtually all moral traditions and certainly all major communities in the United States and then this palliative sedation unconsciousness and just to review that briefly with proportionate palliative sedation the intended effect of the sedation is to relieve refractory and distressing symptoms in a way that is proportionate to those symptoms. So you have as much sedation as you need to relieve those. The unintended effect is that you recognize there's a decreased level of consciousness often and that it may hasten death but the dosing against proportionate to the severity of the symptoms, the amount needed to control the symptoms and the overall clinical condition. So it would be different if a person's dying of stage four cancer versus they have a terrible bone fracture but we want them to get better expect them to get better. Palliative sedation unconsciousness differs in these respects. The intended effect explicitly is to make the person unconscious. And so the unconsciousness is a direct and intended means toward the end of relieving suffering. It is often and it's described in their paper that sometimes the consciousness itself is the source of the suffering and so making them unconscious is the way to relieve it. The unintended effect whether it's intended or intended it depends on who's arguing for this is whether we're in hastening death and then the dosing is titrated again to induce deep sedation. Quill summarized by saying the obligation of clinicians who care for seriously ill patients at the end of life to address intractable suffering requires that they become informed about available options and that they be as responsive as possible without violating fundamental ethical principles. And that seems to me right. And of course the questions within it are well what are those fundamental ethical principles and what would be the sorts of sedating practices that would violate those principles? Or those as we heard about this morning with respect to Stephen Toolman's work those substantive concerns that might be violated in the way we go about sedating patients. So with that in as a background I decided with colleagues here particularly John Yoon who I know is in the audience in my colleague Ken Rosinski to do a national study as we've done with other areas of US physicians to see what they think about these two dimensions of sedation and what they have themselves done in caring for patients who they sedate. Now we were interested, as some of you know I'm particularly interested in my research in the religion associated variations in doctors practices and their clinically relevant opinions. And recently actually this summer paper was published in the British medical, was it a British medical journal? Or was it, hey I can't remember where it was published. By Clive Seal the title of which is the role of doctors religious faith and ethnicity in taking ethically controversial decisions during the end of life care. To summarize what they've found in a study of roughly 3,000 United Kingdom physicians in which they've asked them to report on the care of their last patient who had died is that non-religious physicians, that's their category, were more likely to have given continuous deep sedation until death to have made decisions they expected or intended to hasten the end of life and to have discussed these decisions with prospective or eligible patients. And what was interesting also was that in this study palliative care physicians were far less likely to have said they expected or intended to hasten death, 10% versus 33%, although they were not different in their reports of how frequently they had given continuous deep sedation until death. Now in our study we surveyed 2,000 U.S. physicians aged 65 or less from a range of different specialties. We excluded many, many specialties that we did not think would be directly caring for people who were dying. But some of those that we included and I won't get into the sampling frame but there's some oversampling here of palliative care and so on. Like critical care, hospice and palliative medicine, we surveyed the kind of basic primary care docs, internal medicine, family medicine, general practice and then the subspecialties that take care of a lot of patients who are very ill like geriatric medicine and medical oncology. We did three mailings. The analysis I'm gonna show you now is provisional. We just did it this week after two mailings. Our third mailing is in the field as we speak. So this reflects responses from 1,046 physicians. And we included multiple measures regarding sedation of those who are dying. So here are some of our findings. Again, these are really basic findings that reflect the practices of the US physician population. We had this vignette which said KD is a 62 year old woman dying at home from metastatic lung cancer. Her pain has been treated with high dose long-acting narcotics. Her dyspnea has been treated with a combination of oxygen, narcotics and intermittent nebulizer treatments. KD tells her physician that her pain and dyspnea are well controlled but she is distressed at the constant thought of her impending death. She says, I know I'm gonna die. I just cannot tolerate lying here thinking about it day after day. KD asked her physician to sedate her to unconsciousness until she dies. Then we asked physicians in your judgment how appropriate would it be in this case for KD's physician to sedate her to unconsciousness until she dies. And 28% of US physicians thought that would be appropriate. We had this statement. To what extent do you agree or disagree with the following statements? One of which was doctors should sometimes treat the psychological and spiritual suffering of terminally ill patients by sedating the patient to unconsciousness. The shorthand for this is usually within the field is existential suffering. We found in piloting these items that seemed to induce more confusion than clarity. So this was intended to try to capture that dimension. And we see that 34% of doctors, 6% agree strongly, 28% agree somewhat with this. The rest disagree. Another statement was unconsciousness is an acceptable side effect of palliative sedation but should not be directly intended. You may remember one of the distinctions with palliative sedation unconsciousness is that you aim at unconsciousness itself. So we asked people whether they thought that this item is sort of more consistent with proportionate palliative sedation where you expect it but you do not intend it and 84% of doctors agree that you should expect it. You may expect it but you should not directly intend it. Now interestingly, none of these three items was significantly associated in our preliminary analysis was significantly associated with the religious characteristics of physicians or with how many patients they've taken care of in the last year who have died. We have not looked at palliative care physicians specifically compared to others but we did find a few items in which there were significant differences by religious characteristics and I'm gonna present two of those. So we asked in the past 12 months have you ever sedated a patient with the specific intention of making the patient unconscious until they die? And 13% of physicians said yes, 87% no. If you look at that same item, this is the bar graphs are the percentage of doctors saying yes to that item stratified by doctors religious affiliations. You notice a couple of things. This is a highly significant pattern and that is that those with no affiliation or with an other religious affiliation to be the most likely to have sedated someone unconsciousness in that way. And then you see these very low numbers for Hindu and Muslim physicians. Now because we've done a special form of oversampling so we have quite a few practitioners who are Hindu and Muslim. I can't remember the exact number but roughly 60 or 70 in this analysis of each. And that reflects an earlier study we did where we found that physicians who are either of an Asian ethnicity or Hindu or Muslim, which those were lumped together in that time because we were looking at Asian immigrants from South Asia, particularly in Eastern Asia, were less likely to endorse sedating and dying patient to unconsciousness. We also did this just by the very rough religious religiosity measure of how often people attend religious services and among those who never attend, 21% have specifically intended to make the patient unconscious until they die compared to 10% among those who attend twice a month or more. And then we looked at by the number of patients, looked at these differences by the number of patients who had died, breaking them down into turtiles. So this is the lowest third of doctors. The lowest third of doctors in terms of the numbers of the patients they've taken care of who died, the middle third and the highest third. And you see a pretty striking difference, not terribly surprising, but those who take care of more patients are more likely to have done this. The second item was sometimes intentionally hastening a patient's death is the right thing for a doctor to do. Again, the question, as I noted it, with palliative sedation to unconsciousness is that at least the quill and others have argued in some places that the intention in Dan Brock, that the intention is to hasten death and that that's not a bad thing. We found in our sample that 41% of, 11% agree strongly and 30% agree somewhat that that is sometimes the right thing to do. And then we look at that by affiliation and you see again, Hindu and Muslim being much less likely than those with no affiliation or an other religious affiliation to agree with that along with evangelical, Protestant Christians. We look at it by religiosity, you seem a similar pattern, those who never attend religious services much more likely than those who attend twice a month or more to agree that that's acceptable or is the right thing to do. And interestingly, we see no difference with this item with respect to how many patients you've taken care of who have died. So what do we make of this? I want to say first of all, I've just finished a paper with a colleague on Hume's is-ought distinction and the way it's kind of come down through the past couple of centuries. So I'm sensitive to the reality that you can't move in any kind of easy way from what we see here to what we ought to do. So I think all we can say is that majorities of physicians at this point in time do not believe physicians should treat psychological and spiritual suffering of patients with sedation to unconsciousness. Do not believe unconsciousness should be directly intended as a part of palliative sedation. And do not believe doctors should intentionally hasten patients' death. And the great majority have not administered palliative sedation to unconsciousness in the past year. I think in that respect, palliative sedation to unconsciousness is not yet a standard of care and any of the usual senses in which we think of standard of care. And endorsing palliative sedation to unconsciousness is associated with having no religious affiliation, never attending religious services, which reflects the similar association patterns in the United Kingdom. And that practicing palliative sedation to unconsciousness is likewise associated with these, but also associated with having care for more patients who die. I think that's it. Thank you. You guys have no idea what's happening. And to say that it isn't about just the learning we do here, Mark comes and helps many of us advance our programs and do things in a very special way. And on Monday, despite having a conference this week, he came out and helped us in Oregon. And I'd like to make you an honored member of our leadership team, as to continue to mentor, advise, encourage and wish us well. Thank you Mark. Thank you. What I'd like to do now is talk about where we have come this past year with regard to the Physician Orders for Life Sustaining Treatment Program. We published a piece in JAGS in July that is the largest study done about post a three state study in Oregon, Wisconsin, and West Virginia. The West Virginia PI being Woody Moss, a former fellow here at the University of Chicago. The Pulse program does not make me any wealthier. But that has become ever so much more important. The sources of our funding for the program obviously came under increased scrutiny as everyone wondered who is benefiting from potential cost savings. I had never realized until the stir about cost savings arose how incredibly important the purity of the roots of the Pulse program and the fact that I do not benefit more or less, nor does anyone who founded this program from whether you say you want everything done or whether you would like to set limits or a mixture of both. And certainly all of you are more than aware of some of the unfortunate headlines that have occurred in the past year since our last conference about offing grandma and any kind of advanced care planning was the intent to save money, particularly for the federal government in health care reform. Certainly the talk of death panels was shall we say unattractive. It has led all of us to think even more about the language we use as we think about talking about advanced care planning and particularly the Pulse paradigm. Pulse is designed to honor the freedom, a word I'm using more often, of persons with advanced illness or frailty to have or to limit treatment across settings of care. We find, for example, the word choice doesn't work quite as well as the word freedom. This is what Pulse looks like in states across the United States. Bright Pink are programs that are fully endorsed, meaning they have all elements including EMS fully functional and have been approved by the National Pulse Task Force as endorsed programs that are now mentoring others. We expect two more next month to be endorsed Idaho and Colorado. And then others are developing programs. They have coalitions. They are working. They might have a pilot in a region. They might be working with a group of long-term care facilities, but they are not fully integrated and do not yet need all of the elements or they haven't turned in the paperwork to be approved. Idaho would have been approved a long time ago. Effectiveness, that's gonna be the primary focus of today. What data do we have that the Pulse program works? This was the first study of effectiveness. It was a study using data from one year, prospectively eight nursing homes and looking at people who had orders on Pulse in our first pilot for do not resuscitate and comfort measures only, knowing that this frail long-term nursing home population had a death rate of about one third per year, about 30% per year. And lots of hospitalizations. And at the end of one year, what we found was that not a single person got CPR, ICU care or ventilator support. They expected one third died. And of those, only 5% died in an acute care hospital. So something about the Pulse program was influencing location of death, which it should. The comfort measures only is transfer only if comfort measures fail. So a transfer should not have been occurring unless the symptoms could not be managed on site. The study will focus on today as the one that was published in JAGS in July of this year. It involves 90 nursing facilities, 30 in each of the three states. Susan Hickman is the principal investigator of this study. And the study was deliberately designed to sample Pulse using and non-using facilities. We called every nursing home in each of these states and quantified on a Likert scale the degree to which they used Pulse. None, a little, half and half, most, nearly all. We took the middle through them out and we matched low and high using nursing homes in equal numbers. So that we would have what we call traditional practices and Pulse, we then matched urban and rural and then we oversampled minority nursing homes. There are a lot of sampling methods, but deliberately to as equally as we could match Pulse and non-Pulse using nursing homes. This is the full title and all of the authors. And as I said, Woody Moss is one of the authors, but Hans coordinated the activity in the Wisconsin. One of the things, we had 2000 pieces of data on each of these people. One of the reasons we had so much data is we measured everything possible for comfort in the last seven days of life. We also sampled half living and half deceased in each nursing home. And so it was either the final week that you were still alive and part of the study and living or the final week of life. But we converted everything to oral morphine units and we tried to ask the question, is there an unintended consequence of having a Pulse for them? Do you get less symptom management? Is there fallout? Pulse is not a comfort care order sheet. There would be no good reason to believe you would necessarily get more aggressive treatment for comfort, but many have suggested that if you have a do not resuscitate order, perhaps you are neglected in some way. Something that had never been studied and we thought we're studying. Bottom line is there was absolutely no difference in the two things we measured, attention to pain and dyspnea, which was a relief for the investigators. The power of Pulse is not in section A. Section A is CPR or no CPR. But this is a frail long-term care population for whom the performance of CPR is relatively ineffective. The national rate for you collapse outside this building and we resuscitate you in 20 cities is 8% of successful resuscitations. It is nowhere near that in this frail nursing home population. In one study in 1999, half of nursing homes by policy did not even perform CPR. So we are arguing that for a long-term care population, section A is not where the action is. That if you're gonna influence care at the end of life, the issues are all in section B. Are you going to transfer to the hospital? If you transfer to the hospital, are you going to send someone to the ICU? And the first thing we wanted to know is if you wrote full treatment on a Pulse, then you should go to the hospital and have those treatments at the same rate as someone who didn't have a Pulse form. Because you said you wanted full treatment. The bottom line is it was statistically the same. And it's about 25% in a 60-day period of time. It's not a healthy group. Have an emergency room visit or hospitalization or other life sustaining treatments. But most of them are hospitalizations and ED visits. So having the Pulse alone did not reduce your rate of hospitalization. The workhorse of Pulse to section B, that's where the power is, that's what influences what happens with regard to life sustaining treatments. And the impact is profound. We have never made any cost projections about savings with regard to Pulse, and we intend to continue that pathway for some time to come, but it wouldn't take economists long to take this figure and turn it into many billions of dollars. There is a 67% reduction in that 60-day period of time from those who marked comfort measures only to those who marked full treatment in life sustaining treatments, primarily hospitalizations and emergency room visits. This is a quantification. If you changed your Pulse form during the 60 days, we threw you out of the sample, not quite knowing how to match everything up in the 60-day period of time if you had two different sets of wishes. So the numbers don't match the first slide because we had to remove some people from the sample. Traditional practices means you didn't have a Pulse form. If you had a DNR order, we grouped you as that. And of all of those in the traditional practices, only 13% had any other orders beyond resuscitation, like do not hospitalize or no tube feeding. In the Pulse group, this is the number who had orders. This is remember a long-term, stable long-term care population. And notice that the smallest group, it's 12%, wanted full treatment. That if you talk to frail elders and their surrogates, most of them don't say send me to the ICU. They say don't send me to the ICU. The most frequent thing is send me back to the hospital and fix the easy things. But there is a very significant statistical difference between the group that is full treatment and the group that is comfort measures only. This figure surprised us though. It was really larger than we would have expected because in traditional practices, asking the questions that are in section B are not asked most of the time. Do you want to go back to the hospital? And if you do, do you want to go to intensive care? Would you want to be on a ventilator? But when offered that opportunity, 88% chose one of those two. So that is a dramatic difference from traditional practices is that those categories are chosen. They are what people in long-term care want. And more information is available at the polls.org website about this data, about other studies about polls, about educational materials, videos, other things. And I'm happy to answer further questions in the question and answer. When I first started addressing this topic, I actually presented similar data at the International Society of Portland Lung transplant meeting that was held here in Chicago in April. And I felt kind of like I was the grim reaper in a group of transplant doctors. And I think end of life and palliative care or however you want to phrase it when we talk about transplantation is something that we don't like to talk about very much. And as I sort of reponder this over the last few weeks, I feel schizophrenic in my attitude towards end of life care. But to start with a couple of definitions, palliative care is to cloak or to conceal. And as a heart failure cardiologist, which I am, I would argue that much of what I do is palliative care. When I give someone a diuretic, I certainly not gonna make them live longer, but I will make them feel better. So I think as people have said before me, palliative care is not just about the end of life, it is about making people feel better. So much of what I do every day is to make people feel better. But this is just how people think about palliative care as distinct from hospice, which I think is as everyone here knows a very important distinction. But I came across this definition of transplantation, which was also from the mid 1800s, which I think was a very interesting thought piece to read aloud is that it is a pretended method of curing disease by making them pass from one person to another. So in transplantation, we are pretending to cure things. And I think if you think about that with transplant and long-term transplant, I think it's important to remember that we are pretending to cure people. So transplantation and ethics, I think most people think about the common things which are in the literature, organ procurement allocation donation after cardiac death, brain death, criteria, living donation, retransplantation, justice, utility. I know the next session is gonna talk about racial disparities in organ allocation and transplantation. I think what's important and what's missing are end-of-life discussions, the ethics of end-of-life discussions or palliative care transplant, multi-organ transplantation, something we do a tremendous amount of here at the University of Chicago, whether or not it's acceptable to use social criteria and psychosocial aspects of people to say that they are not a suitable transplant candidate. These are not discussed in the ethics or the transplant ethic literature. What I can say is that when it comes to palliative care and organ transplantation, there are very, very few data. And those that are out there are predominantly survey-based data of patients. They are not of healthcare providers or not of physicians. They're, most of them from Canada. They're very well done, but they are but a very small group of practitioners. And I looked mostly at the thoracic organs, so we're talking heart and lung organ transplantations and not, for example, kidney transplants. And I think in some ways there's a distinction between heart and lung and, for example, kidney because a heart and lung transplant are life-saving transplants. Kidney transplant is a life-extending or a quality of life transplant but is not necessarily a life-saving transplant. So something to keep in mind. Now, when I wanna talk or think about palliative care with organ transplantation or heart and lung transplantation, I really wanna distinguish it from the long-term transplant recipient as opposed to the short-term. I think in the immediate post-operative, post-transplant period, issues of end-of-life and palliative care are very, very different. So what I want you to start thinking about is what is presented here, which is the fact that if you survive the first year after transplantation with a lung, 50% of you are gonna be alive at seven and a half years, and if you got a heart, 50% of you are gonna be alive at 13 years. So what has happened as we have gotten better in our immunosuppression and our management of the medical issues with transplantation is that our patients have now become patients with chronic diseases. They are surviving. This is a wonderful thing, but we have taken someone who had a very acute illness and now making them a long-term survivor with chronic illnesses. They are living longer and they are dying. We cannot look at death and say, thank you, I got my organ transplant. I'm not gonna see you again. I'm gonna see you at some point. And we are seeing our patients die. 10 to 20% are dying from malignancies. These are non-skin cancer malignancies. About 16 to 18% are dying of graft failure. So in the case of a lung transplant, they are dying of COPD. In the case of a heart transplant, they're dying of heart failure. About 9% have encegenital disease-requiring hemodialysis. Allograft esculopathy, specific with the heart transplant population, 14%, bronchiolitis, again, chronic rejection in the lung, 20%, they're dying of infections. These are all chronic diseases as our patients are surviving. They have hypertension, menal insufficiency, diabetes. What this graph shows you is, specifically with hearts, how well patients are doing. And the numbers may be hard to read, but the red are people who are functioning at 100% of their functional status after a heart transplant. And the yellow is 90%. The light or the dark green, I'm sorry, is 80%. So we are talking about a group of people who are 90% are functioning at 80% or greater of their functional status after their transplant. These are functional people with chronic diseases who then become ill again. And so I think that with talking about palliative care in organ transplantation, we have plenty of time to prepare for it. And we have historically done a very bad job of doing it. We have patients who recover from the acute illness and they now have a period of normalcy with other chronic diseases. So I think that it is imperative for us as healthcare providers of these patients to realize that we have plenty of time and the fact that we have not is really our fault in our healthcare delivery and is not one of time. We have 13 years to talk about end of life with our heart transplant patients. But what I think, as I said before, we have to think about the long term, not the short term. And chronic disease management for our patients. So with the transplant patients, it's end-stage renal disease and it's the primary organ disease that we manifest itself. And so as there is very little in the transplant population, I wanted to look at and see what we could learn from other patient populations with these chronic diseases to see what the patients and what the healthcare providers might say about palliative care. So end-stage renal, about 10% of thoracic organ transplant patients will require hemodiathesis at some point. And in two studies that were recently published looking at patient preference about end-of-life or palliative care discussion, patients uniformly valued discussions. What is important is that they expected their physicians to be the one to initiate the discussion about end-of-life and palliative care decisions. They did not expect to be the ones to have to bring it up. And again, a Canadian study, 90% of patients on hemodiathesis had had no discussion with their patients about end-of-life decision making. Which is phenomenal because we know that patients who have end-stage renal disease in and of themselves have a fourfold increased risk of cardiovascular mortality. 50% of them die from cardiovascular diseases, stroke or MIs, and they have a 50% likelihood of having heart failure. Just to give you an idea, there are 28 million people in this country who are end-stage renal disease. So it's a huge population. 90% of the people in Canada who were serving had never had a discussion about end-of-life care. The impediments to us as a field helping with end-of-life care in our heart failure patients is that patients with heart failure don't understand their disease prognosis. We have a whole month, October was breast cancer awareness month. We get a week for heart failure. It's the week that's around Valentine's Day every year in February is heart failure awareness month. And now most people probably didn't know we had a heart failure awareness month. And I think we need to have a celebrity with heart failure come up and try and improve awareness of heart failure because it is more morbid than most cancers. And it is more prevalent than most cancer. It is the leading cause of hospitalizations for the over 65 in this country. And people don't realize that when they have a diagnosis of heart failure that they have a morbid disease. They have cognitive deficits that impair their ability to understand their prognosis, to understand what you're telling them and to care for themselves. They're very big deficits in self-caring in heart failure. That being said, there was a very nice study done in Canada looking at heart failure population and they tend to sort of group out into two groups. Those who would want to have fewer symptoms and less time, so the time trade off and those who would prefer to have longer life. And with respect to oncology patients, they've discovered that heart failure patients would actually, a greater proportion of them, 55 to 65% would actually prefer to have a shorter amount of time with fewer symptoms. So when addressed, heart failure patients are able to express that they would like palliative care options that might make them feel better. We actually, Jim Kirkpatrick I know is here. He leaded this study we did here a few years ago along with Carol Guger, looking at our heart failure population or advanced rectives in cardiology. Just trying to compare cardiology to oncology. And these are comparing CCU patients and those admitted to oncology unit here at the U of C and just advanced directives and who had them. So up on the top left, these are patients in the CCU and what's outlined in green are those patients who have heart failure. So heart failure 20 to 30% mortality for all comers if you're class three or four. So these patients who are in the ICU probably looking at realistically speaking 40% one year mortality we expected. Very few of them had living wills or advanced directives. These are people who have VT or cardiac arrest. These are people who have already died and they're in the ICU and still we have done as a cardiologist a very bad job of talking with them about advanced directives and living wills and these are transplant patients. So I could say these I have done a very bad job because these are my patients. What was interesting is that when compared to oncology patients who did not have advanced directives cardiology patients wanted to have information more than the cancer patients did. So 83% of those cardiology patients in the ICU who did not have advanced directives wanted to have a discussion compared with only 18% of cancer patients who did not have advanced directives. So clearly it is not the patients who are saying I don't wanna talk to you about this. And I think this is a surprising finding that so many of our cardiology patients are willing to have this discussion. So what are I think the barriers for us? I think as a transplant physician I could say part of the barrier is that we have sort of plucked our patients from death and we have said no we're not gonna have our patient and we have given them a second lease on life and many of them have faced death earlier and have come to some resolution but then we transplant them and we say we have a reprieve. And I think part of what are as a society and as a group of physicians what we have a problem with is saying at what point do we say fine we've gotten you through that one but now we have to talk about the fact that ultimately yes you're going to have to face your mortality again. I think where this is in heart failure and heart transplantation we're being pushed a little faster than lung transplantation is with mechanical circulatory support and I know Denzel Maisie has published some study recently about when to turn off vats or how to turn off mechanical circulatory support which is very much end of life planning because you turn off the machine and essentially we are allowing the underlying disease to take over and you will be dead within either minutes, seconds, hours of turning off these devices. So I think we are being pushed in the heart failure world to address these issues. The Heart Rhythm Society which is the Society of Electrophysiologists put out a position statement earlier this summer where they actually now are advocating a durable power of medical, medical durable power, durable power of attorney and a device advanced directive specifically to deal with issues of when do I turn off my defibrillator or not. So I think all of these in heart failure we're getting better. The question is when do we transfer it over to our transplant population and when is it appropriate to talk about? Are we gonna take away all the hope we've given our patients to say we've transplanted you, you're doing great a year after you transplant, 50% of you are gonna be live at 13 years, 50% of you aren't so let's stop talking about it now. So when do you talk about it at listening? Someone's on a balloon pump in an ICU you wanna talk about okay well now five years from now when you've had your transplant we're gonna have to have, that doesn't seem to be the best time. So do you talk about it at the first year? Do you talk about the second year? Do you talk about it once you start having the recurrent problems? There's no, there's no sense either from patients or from physicians about when the appropriate timing is so that's actually something that we are beginning to start working on here and we've got the Society for Heart Lung Transplant who's willing to help us at least put out a survey to try and get a sense from the leaders in the field about when is the best time as physicians we feel would be to talk about it. Patients clearly wanna talk about it. I think we are in Chicago and you know early vote often is our saying for voting. I think it's the same with end of life and palliative care and transplant. We have to talk early talk often. The question is how early is too early when should we start? Thank you. I thought I'd say a brief word in favor of principles because I'm gonna be talking about one. They've taken a little bit of a bashing here today. I actually don't think that there's an essential tension that you either have to have cold, unfeeling, deductive principles or you can have casuistry and somebody who's sensitive to the particulars of the case that in fact both can be used and ought to be used and if we learned a lesson from Dr. House one of those is that we do wanna actually distinguish at some point between right and wrong and that principles can be helpful in attempting to do that and one like the rule of double effect actually arises out of a casuistic tradition. So I'm gonna try to talk to you a little bit about it and hopefully bring everybody up to speed. Talk about how to use the rule of double effect and how not to use it. And I'll start with one example of how not to use it. It's Mae West's version. She says whenever I face one of those difficult choices between two evils, I always pick the one I haven't tried. That's not the rule of double effect I will present to you today. It's this. Again, it'll be a mouthful but we'll go over it several times. It's the sense that if you've got one action that has two effects, the action isn't intrinsically wrong. One effect of this one foreseeable effect is bad, the other is good. One foresees the bad but only intends the good. The bad is not the means by which the good is accomplished and you've got a proportionate reason for acting and then you can go ahead and do that even if you're really worried about your causal responsibility for the bad thing that will happen at the end of that action or that may happen as a result of that action. Some common applications. It's not just in bioethics. We think about it in terms of morphine at the end of life but it's used in just war theory, for instance, in distinguishing between strategic bombing versus terror bombing. Do you aim at the noncombatants or are you aiming at the armaments factory with the possibility that you might do damage to civilians? So the application is wider than medicine. It's not just something in medicine. Where does it come from? Well, a lot of people have offered that it comes from Aquinas' defense of the moral permissibility of killing and self-defense. I think the discussion probably starts there. My own view is that actually if Aquinas started the discussion on the rule of double effect with this defense then he actually got it wrong but he started a good principle out of that. Later scholastic philosophers are the ones who really developed it. Aquinas never used the term. I think it makes a lot of common sense to those of us who are clinicians. I wanna suggest in a few minutes that it's really the basic structure mentally of any clinician who is anticipating the possibility of a side effect. The way we think clinically in many ways is always infused with double effect reasoning. And it's not something that while it got its start with perhaps with Aquinas, that's limited simply to moral theology. There are a lot of contemporary philosophers who make some use of it. Elizabeth Anscombe, Philip of Foot, Bratman, Quinn, Donaghan, even Nagel make some use of this principle. So it's not as if, again, it's something that is exclusively used by theologians. Now, I just wanna suggest that the concept of a side effect really is inexplicable unless you're using something like double effect reasoning. So we have these two general principles that we're often invoking in medicine and in medical ethics, but really in medicine in general, that we want to do good for our patients and we don't want to harm them. But we all know that a lot of what we do results in some harm to patients. So if you're going to remove an appendix, your aim is to remove the gangrenous appendix. You anticipate the possibility that the patient will have postoperative pain. You wanna minimize that. It's not your aim. You recognize the possibility that the patient may have a keloid afterwards. Again, it's not your aim, but it's something that you're willing to take on as a foreseeable unintended consequence of what you're doing. Bone marrow transplants is not just surgery, right? So we wanna cure the leukemia, but pain, infection, bleeding, et cetera, are all possible side effects of that that we foresee, but I think in most cases do not intend. Now we'll go back to this rule. I wanna give you some examples of where it gets used, and I think used appropriately, and where not. So we'll take the classic example of the use of morphine in patients who are dying toward the end of their lives, where people who are opposed to euthanasia may worry that they would, in fact, hasten the death of this person and then hesitate to use that drug for treating the person. And part of what the rule of double effect does is to assure that person that they can, in fact, use that drug and remain conscientiously opposed to euthanasia. So morphine has at least two bad, two good effects. One is to relieve pain, another would be to relieve dyspnea. It has multiple harmful effects. It can certainly give people a paritis, but the one that people worry about mostly is that it might depress their aspirations and therefore hasten death. And it's not intrinsically wrong to use morphine. It's one of those things I would probably take with me to the desert island, along with the cephalosporin du jour. One effect that we foresee, and the one that worries most people in this case, is that you might depress the respiratory drive of somebody, let's say that they already have some depressed respiration. They've got COPD, lung cancer, and a pleural effusion gets a little dicey as to whether or not you aren't, in fact, hastening the death of that person. But you are only, if you're using it conscientiously, intending the good and using a dose of the drug that's appropriate for relieving the pain of that person. It is not necessary that the patient stop breathing in order for morphine to relieve their pain, so the bad is not the cause of the good effect. And certainly in most cases at the end of life, any good physician will recognize that the goal of treating the pain of that person in such a circumstance is a good enough reason to run the risk of potentially hastening that person's death. That's the standard case. It's certainly true that in most cases it's over-emphasized, there's actually a wider therapeutic window for morphine than a lot of people give recognition. You probably don't, in most cases, need to invoke it, but if that's a worry, and particularly when in some cases it might be a very real worry, the rule of double effect says you can go ahead and do that. Now let's think about a way in which it can be abused, and one of the ways that I often use is that of Jack Kevorkian's attorney, Jeffrey Feiger. I don't usually watch much television at all. Court TV is certainly nothing I watch with any regularity, except when Jeffrey Feiger was defending Jack Kevorkian and saying, my client, Dr. Kevorkian, does not intend by using carbon monoxide to kill these patients. He only intends to relieve their suffering using the tried and true rule of double effect, which all doctors subscribe to. Just in case you're in the jury the next time this comes up, you won't be bambo... I wanna make sure none of you are bamboozled the way Feiger was able to bamboozle the jury and get Kevorkian off the hook in those cases. He eventually was, as you know, convicted, but not for these cases. So let's say that a grant for the moment that carbon monoxide has two effects, one of which would be to relieve the patient's suffering. The other obviously is to kill the patient, right? Let's even grant that it's not intrinsically wrong, although I think you might have a hard time doing that. Why would be, as physicians, be giving patients carbon monoxide? I don't have a typically good reason. Let's even grant that Kevorkian was sufficiently confused in his own mind that he really did only foresee the possibility that the patient would die, but he really didn't intend that. He only intended to relieve their suffering. How does carbon monoxide relieve the suffering of a patient? By killing them, right? So even if you wanna grant the first five of those conditions, the last one would preclude it from being operative in that case, all right? So that's a way in which the principle or rule of double effect can be used, a way in which it can be abused. Wanna talk a little bit more carefully though about when we use the rule of double effect. And this, I think, gets insufficient attention, that you use it typically in forced choice situations when all other means have been exhausted. You're not going to take on something like this unless where you're risking something that you think is morally wrong, unless you've done that, and you're not going to, maybe I'll skip this for the moment now, it doesn't involve intervening agents. It can't be somebody others action that's involved as the person who's doing the bad. So the cartoon here says, before we try assisted suicide Mrs. Rose, let's give the aspirin a chance, right? This is the sense that you don't use double effect unless you're forced to and you've exhausted other means. And then actually it's going back, I didn't know that Far was gonna talk as much as he did about the theory, but this will harken back to his talk, that there are really two types of practices that are sometimes under the label that I don't like called terminal sedation. One that I call palliative sedation in the imminently dying that's I think analogous to the proportionate palliative sedation of quill at all. And then what I like, which is actually, I think more honest about the other practice which I call sedation to death, I also guess I like the acronym that goes along with that STD. But palliative sedation in the imminently dying, I think is justifiable as an application of the rule of double effect. You must use in this case an appropriate agent for an appropriate symptom. Your intention will be the relief of that symptom. The unconsciousness of the patient is a foreseen but unintended side effect. If you're thinking about proportionate reasons at all, then you in fact have this structure. You're trying to use the dose that's required in order to relieve the symptom without causing unconsciousness. So if you grant proportionate reasoning at all, you're granting the fact that you're not aiming at making the person unconscious but trying to relieve the symptom, intending not to do that, foreseeing the possibility they might be unconscious. And I think, and although Lynn and I had some discussions about this, the patient has to be close to death. So an example for this, I think would be adding a benzodiazepine for myoclonus for someone who's been on chronic high dose opioids. So they're continuously twitching, they're still in pain. You need to increase the opioid dose in order to relieve the patient's pain but in order to also relieve this symptom of myoclonus, the treatment of choice for that would be a benzodiazepine. You combine that with the patient's preexisting opioid infusion and you've got a pretty high risk that the patient is going to be sedated doing that. It's not intrinsically wrong to use opioids. It's indicated for myoclonus. The aim is to use a dose sufficient to end that symptom for the patient and you'd be happy if you were able to do it without making the patient unconscious. Which again, I think is something we ought not generally be aiming at. There are, Ira Bayak says, opportunities for growth at the end of life and obliterating someone's consciousness is not typically something we aim at anywhere else in medicine as a permanent thing that we're gonna do for somebody. We may do it as a bridge to somewhere, temporarily, for instance during surgery but we're not typically aiming at making people unconscious for the rest of their lives and if that's not true anywhere else in medicine, why should it be true at the end of life? We do, for somebody who has this myoclonus have, I think, a proportionate reason for acting and after that we would withhold other therapies and justify it on the grounds that they are more disproportionately burdensome than beneficial for the patient. Things like ventilators, feeding tubes, et cetera. Acidation to death, which is my name for what is being proposed. The patient need not, under its proponents, be close to death. So the person could in fact be fairly early in a diagnosis of Alzheimer's disease, let's say, and say that I don't, I feel that the burden of living for the next few years, fearing that I will lose my mind is enough to make me want to be sedated. The cause of the suffering need not be a medical symptom, right? It could just be consciousness itself that's causing this. The fact that I am still alive. Hurry up and get this over with, doc. I'm fearful of death, I'm lonely, I'm anxious. I don't find those listed in the PDR as indications for general anesthesia. The aim for these people, who I think honestly want to treat suffering, but I think I would worry about overextending the way in which medicine goes about doing that pharmacologically, is to sedate the patient to relieve those symptoms and then to keep the patient sedated until death. I think it is in fact then euthanasia. One sedates first without feeding and it ultimately leads to death and the aim is to render the person permanently unconscious until they are dead. I think we're running out of time so I'll just close there, skip to that and just sort of say, obviously there are critiques of the rule of double effect. Again, we don't have a lot of time. I'm sure you'll raise them in spades for me during the question and answer. I think I've tried to suggest to you that it's not purely a religious dogma and that's just I think a prejudicial claim that's made sometimes in the literature. If you believe that only the results count and it doesn't matter how you get there, then you don't need the rule of double effect. This is not for people who are utilitarians and in end of life care it's not for people who already have made a judgment in favor of euthanasia or assisted suicides. It's for those of us who are opposed to that. Some people will say it's too complicated to think through all this. Well, topoisomerase is a pretty complicated too and I don't see medical students having a good excuse. Well, it's too complicated for me. Therefore, I don't have to answer that question on the biochemistry exam, right? We need to, if biochemistry is complicated, ethics is more complicated and we ought to be careful about that. And people say it's sophisticated. I can talk to you about the way in which modern philosophy of mind distinguishes between belief, desire and intention and that those are, and it's very important for us to do that as well. So I wanna say that the rule of double effect is a sensible and a practical principle that the use of morphine under the rule of double effect is not euthanasia, that palliative sedation in the imminently dying, as I've described it, is not euthanasia, but we've gotta be careful if we're gonna use the rule of double effect that we use it wisely. And to my view, that doesn't mean that we would be sedating our patients to death and doing some things that I think are part of the, and parcel of what medicine has been since the Middle Ages with those, the goals of that aphorism to cure sometimes, to relieve often, and to comfort always. Thank you. So if I could ask people if you have a question to try to keep it focused, and if I could ask the panelists to do the same. So, yes. You've described the extent to which physician practices are based on the religious care business, and a variety of demand to be, trying to go with the money's act, you've chosen, intentionally, demand to make higher studies and the literature suggests that there will be differences in the tracking of religious differences. So that, this is one of, I think this is a very dull question for people that's out here in the care of their time in general. And so, we wanted to ask questions quite to the point of that issue. Listening to the discussions about money to care, in a heart failure under palliative care, our patients are actually more costly, and that we will, we do use ion drugs, people will go to the coronary care unit, which I think is different from the traditional idea of an intensive care unit, because it's not necessarily there for intubation, mechanical ventilation, but often for the administration of drugs, such as no one interviewed me, which we know will hasten your death, but will make you feel better. So I think heart failure especially is one of those parts where palliative care is actually a very aggressive form of care often. And so I appreciate your comment on that. And then just with respect to terminal delirium, it's a very complicated condition, there are lots of alternatives to be used. They are in the first one, we're trying to electrics. Then I think there are even other cases in which sometimes actually hydration can help people in those circumstances as well. I think that all of those things ought to be the ways we would typically treat some alternative. I guess I would have to say that there's no one better. And I hope, and saying that probably pretty naively, but that's sort of how I roll. But I think it's, what? I said I trusted my training, at least we audience. Yeah, and I think that that's one of the things that is so beautiful about palliative care and being an ethics consultant for so long, and finally being able to go and have a talk with a goes of care discussion with a family and a patient. And actually having an alternative, a real alternative, we're gonna have you go to palliative care instead of there being, okay, you either stay in the ICU or, and you just stop. And now it's either stay in the ICU and beyond all these machines, et cetera. Or we have this wonderful alternative where you'll continue to be really comfortable and will be aggressive about your comfort. And so I feel like it's absolutely the best sort of combination. So Dan, and then Far. Let me say at first that what you're observing I think is very, very common. When you see our experience in New York, once we started ramping up our palliative care service, the ethics consults dropped in half because these things were being addressed upstream and most of us family would do them. But let me just take a little bit of a difference to say that I think you may be right, there may be some cases in which it would be good to separate the roles. So one thing that happened while I was in New York, there was a physician who was apparently bad enough to be among all the house staff saying, who's this guy, he's an ethicist, he's calling an ethics consult on his own patients. What is this? You know, hematologists, oncologists, I wouldn't do that if it's my problem with my patient. But I think that the process of ethics consultation typically involves, at least as we had conceived it, more voices than just one. It's often a good thing even if you're involved in the care of a patient to sort of ask somebody else to come in from the outside and help give a little bit more clarification. So I think that there can be times in which a good clinician will recognize the distinction in roles and refer. I was just, this picks up somewhat of what Dan said. It seems to me that one cautionary note is that although it's very, we're clinical, we're doing clinical evidence and the ethical disputes are about care of people who are dying, and it makes sense for the clinicians who care for people who are dying, to be doing the analysis in that sense until it fits. Mike, I think it could be done very well. The cautionary note that seems to me is that we know that already there's a tendency in many institutions for the out-of-care consultation to be called to help the family get on the way to where they're dying and not using ethical resources. And I don't think it is in our institution that the clinical evidence consultation hasn't been brought in that way. I think there's just the difficulty of caution against being drawn in as we're all together here and all of us together here. Now, I just don't like to be modest like hope, you know. We're all together here. The ethicist, the power of care, the office, to get you toward what we all know is the best way, which is to have a nice, dignified, comfortable, smooth death. And anyway, that would be the cause. And in our institution, we have both a very strong powers of care team and a strong ethicist consult service. But one of the things the ethicist consult service offers is the ability to look at something that's actually a systems problem, move it to the institutional ethicist committee. For example, we're a transplant center, many patients with advanced blood disease who are coming here to the police visit us. And sometimes we're losing a lot of blood products that has been all of the blood products in the city. That's a really big problem. And to be able to deal with that in a way that means to set some policies which in the end, at four years of blood in a person with a certain level of advanced blood disease is a mandatory consult to try to care now, but set up by the ethicist, institutional ethicist committee, that it is not to see the patients or to make all the techniques that are talking to each other about pharmacists. But it brought in a way to go even farther and deal with things that might have been a current problem that evidence was really looking at the resource allocations and analysis resources where that's a couple that might be quite different than what we're talking about. So I apologize for others who may have other questions but we really do have to take a break. Before we do, Mark was gonna say something. Thank you. He can, since he is Mark. No, no, it's the head of it. It's the head of it. Thank you. It was 25 years ago that I wrote that institutional ethics committees should be replaced over time by much more targeted and focused groups of consultants, groups who knew their own discipline better than any committee could possibly note the subject. In fact, the example I gave back then was for an institution that ran five or six different transplant programs, kidney, liver, heart, lung, and so on, that it might be the case that the ethical issue is so distinct and discreet among those different transplant programs to imagine that the local group who did heart failure or who did liver transplant with their doctors and nurses and social workers and therapists might be called about for those questions. I have a feeling that what was posted in September in palliative care may be a major specification of that kind of evolution, that the field has evolved and changed in 25 years, such that palliative care people now have a body of information, expertise, clinically experienced patients, such that rather than an institutional ethics committee, they're the ones who ought to be doing it. Similarly, the heart failure patients, Sobi and her group have worked out systems of care. I never thought that palliative care and cardiology and stage heart failure would be more expensive than ordinary care, but I listened and I learned that we may actually see some of these things involved in a group within an institution who are really sadistic, maybe psychiatrists on decisional capacity, near-nail groups who work with issues that are much smaller than those of us in adult medicine, it may be that palliative care is leading the way in that direction. Now what the relationship should be seems to me is still to be worked out between the specialists and the generals. I mean essentially what we're creating here is a subspecialty division within clinical ethics in a way for specialty that's never been certified nationally to now have a whole series of subspecialties evolving from it. But I think this is something to keep in mind and watch going forward. I think it's gonna be very interesting. So we're gonna take a very short break and let me thank our panelists for excellent presentations. Thank you.