 It's a pleasure to welcome you to the fourth panel of this year's annual McLean Center Conference. This panel is entitled, End of Life Care. It is my honor to introduce this panel's moderator, Dr. Susan Toll. Dr. Susan Toll is a graduate of the Oregon Health and Science University. After graduating AOA from Oregon Health Science University, Susan completed her internal medicine residency at UC San Diego, where she also was chief resident. Later, she completed a fellowship in clinical medical ethics here at the University of Chicago. Susan founded and has directed the Oregon Health and Science University Center for Ethics in Healthcare since 1989, and has shepherded its growth into a now internationally recognized ethics center with programs such as the Portable Orders for Life Sustaining Treatment, the Pulse Program, and more recently, the Program in Compassionate Communication. That is, let me emphasize that Pulse, which is now active in 46 states, was developed by Dr. Toll in Oregon many years ago. Dr. Toll is a professor of medicine and holds the Cornelia Hayes Stevens Endowed Chair in Healthcare Ethics. Her awards include the 2014 McLean Center Prize in Clinical Medical Ethics and the Oregon Health Sciences University Esther Pol Lovejoy Leadership Alumni Award. Susan Toll also serves as the Chair of the Oregon Pulse Coalition. It is a delight to introduce you to the moderator of the fourth panel, Dr. Susan Toll. It's wonderful to be here. I miss you, Mark. I'd love to give you a hug in person. I'd love to see so many dear friends in person. It's an honor to be leading our panel on End of Life Care, our final panel for the day. Every one of our panelists is a graduate of the McLean Center, though we span three different decades in our time at the McLean Center. To begin my portion of the talk, I'd like to talk with you today about the fact that we've had lots and lots of data about how Pulse works, what some of the problems are, but it's really getting to be time to put that evidence even more into action. So I'll be talking about aligning Pulse orders with wishes and what can be done to put that evidence into action. Neither I nor the Oregon Pulse program accept gifts from healthcare industry sources, so I have no disclosures to make. I have five objectives today. The first very relevant to our title, with what is ordered on the Pulse form, do you receive those treatments? Are your wishes to set limits respected? How concordant are orders and care received? The second is what kinds of systems can we develop to assure that Pulse is found and honored? Pulse is a set of medical orders. The template for Pulse needs to be designed and refined and innovation needs to continue to occur as there's new medical science. Next, patient wishes for treatment often change as people get sicker. Pulse needs to be able to be revised and new Pulse forms and orders written over time. And last and our most challenging is that with success comes a little over enthusiasm and the problem of Pulse being used in people who are too healthy for a Pulse form and should have an advanced directive instead. Looking at our first objective, how well do Pulse orders match treatment wishes? The first study was done as Oregon launched the statewide use of Pulse in 1995. This is looking at eight nursing homes and prospectively looking at 150 people who had orders for DNR and comfort measures only and finding that not a single one of them received CPR and 5% ultimately died in the hospital. Now, some people should probably be dying in the hospital. It may not be possible to manage their comfort in their current setting of care. But this was quite different from the figures others were seeing for nursing home resident death in the hospital at the time. And began the national rollout of the Pulse program. I want to emphasize that there has never been a randomized, controlled study conducted about Pulse. There are lots of studies about associations and looking at different populations but there has never been a randomized controlled study. There has, however, been a recent systematic review. In this review by Kelly Varness and colleagues published in JAGS in September, a careful review of studies that were looking at treatment limits and concordance and how well wishes were respected. The study examined in the end 27,000 people and looked at the different comorbid conditions. Most of the people and most of the studies that qualified for this systematic review were from Oregon. Partly because we have the tremendous advantage of a statewide registry that's been in operation for over 11 years and because over half of people who die have a Pulse form at the time of death. The conclusion of this systematic review was that there is a moderate strength of evidence that treatment limits on Pulse may reduce the intensity of treatment among people with serious illness. That the associations we found in that early study from data in 1995 have borne up in other studies over time to show an association with both reduced in-hospital death and for reduced length of stay or admission to the intensive care unit for those who have set those limits on comfort measures only for the hospitalization on limited treatment for the time in the ICU. They also identified that there are times where the system is less than perfect and that there are difficulties at times locating Pulse forms or consulting them when they're available. Oregon is extremely fortunate to have a well-established, well-coordinated statewide registry system that is integrated inside the EMS system so that EMS in the field can consult the registry. Making it easier to find Pulse forms, but it doesn't mean everyone looks every time. Another huge advantage to being able to find Pulse forms and thus honor them is that when the electronic record system tags a Pulse form to the patient header with a yes-no tab so that if it says yes, you know you click it, you see the form almost instantly. Pulse is much more likely to be looked for if it's so easy to find. Another area where forms might not be found, might not be honored is if they are scanned into the electronic record system but it's done in a way that loads them incorrectly as date scanned instead of date signed. Therefore not making it clear immediately which form is the most recent. There are a significant number of people who have more than one Pulse form completed before they die. The next objective is to be sure that Pulse is recognized as medical orders and like any other medical orders, if information becomes known about what works, what doesn't the template needs to change. We have changed Oregon's Pulse template 13 times. In those changes we have removed sections that were less effective. At one point there was a section on antibiotics that has been removed and most recently in 2019 we removed this section on feeding tubes. There are new medical treatments. They need to be added to the form as things have changed over the past 30 years of the use of Pulse. So it's important not to put this medical form into statute or regulation because it makes it ever so much more difficult to change it. We also need to recognize that this is not one and done. That goals of care conversations need to occur as health status changes as other events occur or if patients now have different preferences. It is pretty common as people become more ill that they set more limits on treatment. It can go the other way but the predominant change in those forms coming into the registry every month is in the direction of setting more limits as one is closer to death. Like any other medical orders it needs to be able to be changed and to be changed quickly to avoid one set of orders to create new ones or in some cases a patient decides they don't wish to have a Pulse at all and to be able to avoid them. Oregon's biggest challenge is the success of our program. A little as good a lot as better is not right for Pulse. Pulse is intended for people with advanced illness and frailty. It is not intended for healthy 65-year-olds and yet what we began seeing after the registry went into effect and we could more accurately track patterns is that in looking at 444,000 Pulse forms submitted to the registry over an 11-year period of time that there was a substantial rise in the number of Pulse forms completed with orders for CPR and full treatment. And in examining that it raises questions about what encourages the overcompletion of Pulse form and where do we need to be cautious about whether people are ever feeling pressured to complete a Pulse form particularly when they're too healthy. One of the things we've learned in making vigorous efforts as that curve started to rise was that education is no match for incentives and that incentives don't need to be financial incentives or pay for performance incentives. They can just be counting or designing ways to make it too easy to complete a Pulse form when something else would have been more appropriate for the patient. We have learned that any kind of counting is a problem for an advanced care planning metric. I am concerned that the new HEDA standards that encourage an advanced care planning metric including encouraging an advanced care planning metric for anyone over age 81 may result in a spike in Pulse forms at age 81 whether or not the patient is Pulse-appropriated. If someone reaches the age of 81 and they're male pre-COVID, the lifespan was eight years more. If a female reaches the age of 81, the average lifespan is nine years. Many, perhaps most, 81-year-olds are actually not Pulse-appropriate. Will we short-circuit goals of care conversations if there is any kind of encouragement or pressure to count Pulse forms as a metric since it may be faster and easier to complete than an advanced directive or a longer documented conversation in the patient's medical record? We have found that a Medicare wellness annual visit template that includes a dropdown to Pulse as one of the options drives Pulse completion at age 65 and an increase in CPR orders in that patient population who were too healthy to have a Pulse form. We've also found that facility discharge orders if they have a dropdown to Pulse encourage the overuse of Pulse and people who are going for short-term rehab. Hip or knee replacement and two weeks to a facility should not result in a full code, full treatment Pulse form that lives on that was not a substantial goals of care conversation and simply being used as a code status form. And I am happy to share that we have built not only a new and much improved Pulse website to make education much more available and to share all of the quality and details of why each change was made in the Pulse form but we have also developed a new platform for the Oregon Pulse Registry and that platform allows much more detailed data every single month to go to each of the major submitters the larger health systems that look at things like what are their rates of CPR compared to the statewide average. What are their rates of what we call non-registry ready means there's something wrong with the Pulse form such that it can't be entered into the registry. The date signed isn't there or can't be read kind of problem and for those health systems that have converted to ePulse what percent of their forms are paper versus ePulse. This is a very helpful to continuous quality improvement and we've seen major improvements in health systems who can get access to this kind of data. Still submitted to the registry 70% of the forms are paper and about 30% rising a little bit every month are ePulse so we still have a hybrid system of paper and electronic and everything is entered such that it can come back in this way to individual submitters. I welcome your questions they should go in the chat function they won't be asked now and we'll take a look at what that looks like and welcome questions for our final panel in the chat function. It is now my pleasure to introduce our next panelist and one of the graduates of the McLean Center he is well known for his innovation and that is too humbly stated in this bio he was a fellow of the McLean Center and a graduate in 2008 Dr. Giuliano Testa is well known to this audience he has presented previously at McLean conferences he's a graduate of the University of Padova Medical School in Italy he completed general surgery residencies both at the University of Padova and at the University of Chicago and then a fellowship an abdominal organ transplant at Baylor Medical Center in Dallas, Texas in 1998 Dr. Testa moved to Germany to the University of Essen where he contributed to the start of adult to adult living donor liver transplant program in 2001 he was recruited with the title of associate professor of surgery and director of the liver transplant program at the University of Illinois at Chicago and in 2005 he moved to the University of Chicago as director of liver transplant and hepatobiliary surgery and rose to the brink of professor of surgery Dr. Testa was recruited by Baylor University Medical Center in 2011 to lead the living donor liver program and in 2017 he was promoted to the division chief and in 2019 chairman of the Simmons Transplant Institute Welcome Dr. Testa Thank you for the kind introduction and thank you to all the organizers of this wonderful conference specifically to Mark Siegler I noticed that after many opportunities I have to present this conference I kind of graduated out of the surgical ethics into a much broader audience I don't know what marks I'm going to get but from my presentation today I'm well known for getting in trouble with my presentation this is no difference and no different probably a little bit of high brows kind of high rising presentation but anyhow I'm going to talk about the ethics of organ procurement from DCD donors and why DCD is one of the questions and the definition of that somehow tied to this topic and choosing that I think is very important Why DCD? DCD is a method of obtaining organs for transplantation that is rising tremendously as you can see from these slides the number of programs in the United States utilizing DCD donors is increasing significantly, specifically in the past 10 years and only my program the number of DCD kidneys transplanted every year is rising to more than 60 this year and this is our organ bank in Texas, the Southwest Transplant Alliance practically 2 out of 10 or 3 out of 10 of the donors we do are DCD donors so it's really a very important source of organs for patients the fact of the matter is also that the yield that we have with these organs is now as efficient as one would imagine due to the fact that if the donor does not aspire within a lot of time the organs don't get procured and the donor is brought back to the room to finally aspire this didn't seem to be a big issue in the beginning so in 2000 the National Academies Press said seems not to be a big concern how we would declare or we would intend death in these donors reality is that not too long after we start to have a lot of voices raising concern about the way that DCD donors is performing in the United States and specifically regarding the fact that the donor is really dead there is a conflict of interest with the physicians that are involved in the donation process and the concept of premortar intervention which has become much important specifically this year when the Association of the College of Physicians in the United States put a very strong article out condemning or raising criticism regarding the dormant perfusion of trinence of the DCDs which practically involves intervention on the donor after the heart has stopped so at the base of this clearly that donor rule that was thought about many, many decades ago says that the donor has to be dead before we can procure the organs in the case of the DCD donor after cardiac death the death is the meaning of that in this case the definition is that the heart has stopped beating but clearly that's only the definition because in reality there are many problems at the start when the heart stops beating it needs to be irreversible and there is a question of whether even if the heart has stopped beating is the brain also dead? is there still brain fraction is still brain cells are alive or not? you could even see this under two different kind of death on one side we came to some form of more or less accepted by the great majority of people of brain death concept as the neurology defined that but then there is this death after cardiac security arrest and the question is are these donors really dead? well not yet the heart cannot auto resuscitate and the brain must also be dead so in conclusion you should have some time after the heart stops before you can declare the death of the individual and this time has been barring between 120 seconds to up to 10 minutes and there shouldn't be any intervention to restart the heart after the heart has stopped working but this is exactly what we're doing today with the new techniques for the city donors and the late Robert Beach saw this really well in 2003 when he probably had something very critical to say about the way the donor role was brought to our attention but besides this what I think it's important about what he said in 2003 is the fact that when the donor role was brought to our attention it was really at the down of the era of transplantation where transplantation was almost still experimental today we can't speak of transplantation in those terms today transplantation is almost a commodity which is accessible to hundreds of thousands of patients in the United States and in the world so if we look at the donor role was created for ethical and moral reason mainly there are many papers where they used the verb killing I really never really enjoyed it transplantation for many years I never thought I was going to kill any donor but the change also is the that is not an event a single event has become almost a process and there are behaviors that we establish once the that is pronounced and one of those is the organ procurement I like to see this in terms of when to think about that is the loss of integration between our somatic function our brain functions I think that's a very important concept for defining the death but I also want to bring about a little bit of a donor centric view everything that I've read about the donor role and about the definition of that is extremely intelligent written and mostly right according to your opinions about that but really there is very little about the autonomy of the donor and the consent form for the donor and also there is a lot that is spoken about the donor being used as a means to an end which I really never thought about in this otherwise I would probably not even be a transplant surgeon but in general we can see the donor as a person in full moral standing the moment that he has given consent for donation and then in general we can think that what is the pivotal moment that we start this person from being a person for whom we are withdrawing support to a person that becomes a donor and so when do we kind of intend this process of that having its pivotal moment is probably the moment we extubate the donor or the patient so in this room I assume we think that we're drawing care from a patient who doesn't want to live any longer because of a variety of reasons is an act of maleficence I think it's by the opposite since I said and yet we never thought that the physician who's helping this patient to really to end the suffering is committing some moral ethical or legal crime the even in the book that Lenny Ross and Robert Wisser wrote about defining death there is an interesting point about trying to define the moment in which somebody is considered death and in which we can start to initiate those that are defined as that behaviors and I think that in my opinion the moment we decide we're going to withdraw care the moment we pull that too is the moment in which we can start thinking about a new phase in the life of that donor of that patient and seeing him as a donor for whom we have two aims one is providing the best possible a transition and two the one of fulfilling the wishes that are the one of becoming a donor and in doing this we also are able to provide comfort and beneficence to 100,000 patients that are waiting for those organs so if the ethical driver to withdrawing support is to respect the decision and the will of the patient then I would say that maybe we can apply the same ethical framework for donation itself and we can see how we can join the desire of the donor to the need of the recipient clearly this is not in bed at least not looking at this under by the way of the very well known speaker of this conference when we say that anytime that we withdraw care we should provide adequate pain control we should avoid prolonging the debt process and we should really achieve a sense of give the patient the sense of control over their own debt which I think is a very important point all of this you can see under the donor point of view whereby the only way that we know that we give absolute control of pain is anesthesia, general anesthesia the the prolonging of that happens all the time in DCDs because DCD is the donor of the cardiac donor is extubated and then we had to wait until he or she dies while extubated and by not giving them the opposite of the donation we're not really giving them a sense of control over their own debt so what I said it can be seen under the patient for whom we withdrawing support but I dare to say that we can also make this goal of care seen for the patient for whom we withdrawing support as the goal of care for any patient who also wants to be a donor so we could join this in a continuum of care between the dying and fulfilling their wishes and the recipient so that they can receive the best care possible with a transplant so this is not only what the donors want but this is also what the family say and there is a very interesting article on American Journal of Transplantation where the comments and the feelings of the relatives of the donor who do not aspire and that brought back to their room to finally die those feelings as a waste, as an increased painful process prolonged agony and also they bring about this confusion about the debt process itself and we know regarding what we heard many times in this conference that we can define the moral debt but there is no really moral debt without biological debt biological debt is something that we can somehow specify when the integration between the body and the mind is really completed that debt is now probably an easy question to answer because there are so many opinions about that again Beach and Ross in their book say that you can define a whole brain debt you can define a hybrid brain debt you can have a somatic debt but there may be many different ways many people have many different opinions about how they want to define their own debt based on religious ideas, based on society or the part of what they belong to based on whatever credit they have what they suggest and I fully agree with that is that there is going to be a wise way of looking at this and giving a definition which is like the central definition of debt as would be a whole brain debt and then leave some form of a room outside the definition whereby we can fit some other feelings or opinions or ideas about that being this somatic debt given by the arrest of the heart or being the higher branch functional of the brain at the same time we probably should in 2021 start considering what the wishes of the patients are and how we can create a system whereby these wishes can be really fulfilled based on the values of these patients and based on their willingness to become donors and trying to provide a gift which is as good as it should be because the reality is because of the way that the donor of the cardiac back that is performed very often those organs are not as good as they could be and that is good to the ischemia time and there is a greater incidence of the leg function there is a chain of events that starts because we are procuring organs in following these rules that unfortunately is now bringing about the best outcomes for the recipient and kind of breaks the continuum of care that I would like to enhance by joining the wishes of the donor to the need of the recipient making sure that those wishes are fulfilled in the best way possible so the debt donor rule is in a certain way an important obstacle we can decide if we think that we cannot change it then we have to rethink the entire D.C.D. procurement because clearly some of the comments and criticisms that have been raised regarding D.C.D. have foundation so if we decide that that's the way then we have to live with it and we have to live with the idea that we are not procuring as many organs as we could and we are giving organs that are not as good as they could be because we stand by that rule on the other hand if we want to think that there is a different way, a different framework that we can apply to the debt donor rule then we may start probably to recognize that the donor rule had a great meaning and still has a meaning in when it was created but should be revisited regarding what the true patient wishes are when the specific patient decide to be a donor so my conclusion are fairly simple at the end of the day meaning that D.C.D. donation is extremely important for this country it's probably the best and readily available source of organs for transplantation as move from kidney transplantation to liver transplantation pancreas transplantation and now to heart and lungs but in a certain way is now utilized for the benefit of the 100,000 patients waiting for a transplant because we are anchored in a center way to a framework which was extremely important when it was created but should be revisited today about 50 years later I would say that a renewed ethical approach would be extremely important and beneficial it should be a donor-centric approach and it should be founded on a continuum of care from donor to recipient and so that is really I think a beginning of a conversation I'm not having an incredible idea how to put this in practice but it will be very very interested in participating in any conversation as to see donation of the cardiac diet under a different ethical identity today thank you for listening to me and I'm looking forward to the conversation that we're going to have afterwards thank you Mark again Dr. Tessa thank you for that fabulous presentation some questions are being entered in the chat box and welcome more our third panelist is one of the earliest fellows in the McLean fellowship program and each year I and many of you look forward to David Sheedemeyer bringing back a real human element to the presentations often with music and story he's a palliative care doctor in Oshkosh he provides specialized medical care to those living with serious illness he focuses on relief of symptoms he received his medical degree from the medical college of Wisconsin and has been in practice for a couple of decades it's wonderful to see you I wish it were in person David I look forward to your remarks thank you so much it's great to be here and it's great to be back in Chicago at least in my mind it's been my fate of late to watch my loved ones die of brain diseases my son died of a glioblastoma in 2017 my daughter-in-law died of a grade 3 glioma in 2019 and as I write this my father is in the dying process from Louis body dementia so I must turn my focus in clinical ethics to the issue of personal moral history of moral footsteps if you will as a serious brain disease evolves a person loses decision making by degree often it's infinitesimal my father now writes in his calendar in the wrong week a month ago it was just the wrong day my pharmacist son went from putting his own team azolamide in his daily pill container to not remembering if he took his dex an hour ago my brilliant daughter-in-law made ever smaller ever lower point value words in scrabble in palliative care and clinical ethics we rely on surrogates to use substituted judgment as a standard I tried to use that concept that a par of attorney for healthcare should try to imagine that for example grandpa would be able to hear and understand everything we're saying about his disease, his medical indications and he would be able to reason and express his preferences this really is grid one and grid two of the Seigler decision making system and this grid is of course reasonable and in fact admirable but to do this and this is the problem I would ask the granddaughter knowing your grandfather and the things he likes he doesn't like his interaction with the medical system what would he do if he could magically wake up and hear all of this right now be with us I was looking for a patient preference but I see now that this is the wrong question I should have been asking the granddaughter to trace his footsteps to arrive at the answer his footsteps show his preference he can't magically wake up and decide anything I should be asking her to look back over his long life the weaving trail of his footsteps with this family in his faith through his work I should ask how he navigated the medical system I should find out if his journey includes the willingness to fight through uncertainty or if it's at its end I should be asking how to let him die in his footsteps the question is of course relevant in all persons with critical illness but it's even more relevant perhaps in people with brain diseases if someone is dying of dementia what baseline states are we asking them to magically wake up to last year at this time five years ago ten years ago Dylan that is Bob Dylan as we would expect from a reluctant Nobel laureate he has it all right here all of these issues examine brilliantly in just one quiet little song from 1962 1963 the song because of its dark themes took on a special resonance during COVID-19 and during some of the worst hours of that of this that we're going through and some Dylan fans think that this is really an anthem for our times Dylan's next lines are there's been rumors of war and wars that have been the meaning of life has been lost in the wind and some people thinking that the end is close by instead of learning to live they're learning to die if we were to individualize this at the bedside we now think of the loss of hope for each individual patient each person who's been informed of their brain tumor of their Lewy body dementia of their metastatic sarcoma of their pancreatic cancer the meaning of life all that has been all that has been known all that has been done is lost in the wind the end is close by or is it instead of learning to live it is tempting even seemingly necessary for all of us to learn how to die but Dylan rejects this fixation on death and dying he begins his song with this chorus of hope he's asking us to sing with him somehow if given a terminal prognosis someone tells me that death is coming round as he puts it he will not carry himself down to die this line carry down to die is especially interesting to me because there's something about death that implies going to ground the ancient mounted barrows the stony tombs of the pharaohs even the frozen bodies of the sparrows all on the ground all all gone all dead death is coming round but Dylan seeks to drown out these medieval modal chance of death he sings he's staying almost completely on the one chord he says I don't know if I'm smart but I think I can see when someone is pulling the wool over me and if this war comes and death's all around let me die on this land for I die underground and I'm not trying to tell you how a song means poem means but it seems to me that Dylan is saying that the constant talk of despair is somehow an attempt to pull the wool over his eyes causing his vision to be blurred to lose focus to make a wrong decision in the direction of complete hopelessness even if the war does come and death is all around he still wants to die he still wants to die above ground on the land not below it he does not want in a sense to be buried alive he wants to be allowed to die naturally now I would like to digress here about doctors who mispronounce death mirrors meant to show the steam of living breath from down in the deep coffin bells with strings connected to the cold fingers in the caskets pacemakers which just keep on pacing the time I was learning to play the violin in an old and I was playing in an old cemetery near the folk festival and I saw the ground move as the supposedly dead people underground moved away from the sound of my scratchings on the fiddle etc. but I won't digress I will stay focused what I'm saying here is that I worry that surrogate decision makers are not doing what Dylan wants done for himself and what I think should be the standard for all health care powers of attorney we should be letting people die in their footsteps this is actually their patient preference in the secret decision-making system and I would submit that we're not doing this our job our only job as surrogates is to let people die in their footsteps let me repeat that all surrogates who are representing people who are adults and have a moral history adults who are not born disabled who have a track record all surrogates who represent them must trace back to their footsteps and make sure they're honoring where those footsteps were heading in a sense you need to follow the pulse the pulse trail read all the handwritten text on that power of attorney if possible better yet know what is the right thing to do based on prior moral knowledge I like this better than the magical thinking exercise of having grandpa wake up and get all this information and be able to reason to know everything be part of the family meeting some of this seems like it might be more obvious to families than it really is I'm not saying it's easy one of my favorite lines when I made ICU rounds as a part of care doc was I don't I don't think grandpa here in bed 12 I don't think he really wants to be on the ventilator today why is this grandpa on the ventilator today and then the intensivist was sheepish to come up and be sheepish and say he's actually not just a grandpa he's a great grandpa and now say poppycock to my clumsy attempt at finding substituted judgment in my imagination poppycock what was I thinking and what's the use of having a surrogate if they don't trace your footsteps back and figure out how you would want to die in your footsteps why is great grandpa even on the ventilator today I don't think he wants this do you really now Dillon goes on to sing of water flowers highways geographic locations and peace as he often does I will spare you all of this but he does end the song was saying that if we go back and find the joy of life we will be able to die in our footsteps it's the granddaughter's job to go back and remember grandpa before he was on the ventilator or being considered for the ventilator before he was in the hospital before he had Louis body dementia to remember what gave him joy to remember what direction he was headed all his life the times when she saw him walking and moving and talking at family parties at holidays at birthdays at funerals what would he want given his footsteps then do that brain diseases especially teach us that we can't ask surrogates to play imaginary games my son lost the ability to get out of bed and sit next to us at a family meeting and magically represent his wishes many months before he died but there were still so many decisions to be made but his footsteps could be traced clearly his path was clear and his spirit was strong in life may we remember that for most people at least for most of our adult patients there's a history of walking down the highway as Dylan puts it there are previous footsteps people make their own trail as best they can and it is our daily job surrogates clinical ethicists palliative care physicians all clinicians everywhere to find that trail to find that path and to follow those footsteps thank you so much Dr. Schiedemeier I always feel deeper in myself when I hear your reflective thinking and I think how often we may have worded inappropriately our guidance to families our next speaker on our panel graduated from the McLean Fellowship Program in 2020 Dr. Christos Lazaridis is a neuro intensivist who specializes in advanced monitoring of severe traumatic brain injury Dr. Lazaridis also is it heavily involved in neuro critical care ethics he is trained in both neurologic and general critical care he has co-authored over 70 peer reviewed publications and he has the courage to take on the title today death by neurologic criteria a construct in search of public justification thank you Dr. Toll for this very kind introduction and thank you to the organizers of the McLean Center for this conference so I so I'm going to talk about the title of my talk maybe a little bit presumptuous but and I'm not a philosopher so this attempt may be ill-conceived but I'll give it a try so just since we are towards the end of the day here my slide I don't see it advancing yeah so I want in one slide to summarize my approach my commitments and claims so the main premise of the talk is that defining death is really a political issue there are plausible standards and those are a somatic standard accompanied by circulatory criteria death by criteria death by neurologic criteria or whole brain or brainstem death and then finally higher brain death now the approach I will follow is based on the philosophy of and so since burdens of judgment apply which is a state of art within reasonable disagreement can be expected in terms of these standards such disagreements would not be resolved via the coercive powers of the state nevertheless the state must legislate which leads to a neutralist dilemma now the first implication here is that citizens should be allowed choice among plausible death definitions now in order to establish a default that is necessary for public health really reasons and other important reasons that I'm going to talk about we need to exit this dilemma and I'm going to offer a precautionary argument for that and then finally I'm going to argue that death by neurologic criteria is the normatively preferred default and I employ the heuristic of the original position or the veil of ignorance to attempt to offer public reasons in favor of DNC okay so what is that we try to define here and I like a lot this statement by Alexander Capron who said that at issue is not a biological understanding of cells and organ systems but rather a social formulation of humanhood through a formal declaration of the points at which life begins and ends society determines who is a full human being with rights and responsibilities the way I understand this is that no conceptualization of human death can claim universal validity since this is a question that cannot be settled solely on biologic scientific grounds rather it's a matter of normative preference is socially constructed and historically contingent that means that this situates the discussion of the definition of death in politics it's a political matter the question is how should a liberal state legislate death couple of principles one is legitimacy in imposing coercive rules stems from citizens being able to see reasons from their own perspectives to accept these rules defining death is necessary for medical purposes for example knowing when physicians are allowed to discontinue artificial support or remove organs or when a human body may be autopsied or buried but the definition of death and the determination of death is important for other reasons for example investigating murder or manslaughter when someone may be held accountable for wrongful death when the posthumous disposal of property may take place and when to change the surviving spouse's status to veto now these are decisions that will be supported and enforced by the state's coercive power and in their old sense should fall under questions of basic justice let's go to a classic traditional way of analyzing the definition and the determination of death a four fold conceptual scheme by Capron and Kass one we need to define and agree on a death concept and here we are talking about the philosophical definition of death for example the soul leading body or the end of personhood or the end of cessation of homeostasis or the organism two is general physiologic standards these are the empirical signs that satisfy the death concept three is operational criteria so what are the empirical signs that now satisfy the general physiologic standards and then finally we have clinical testing based on clinical guidelines now the current state of the law 24 detonation of death act the UDDA says the following that an individual has sustained either the reversible cessation of circulatory and respiratory functions or irreversible cessation of all functions of the entire brain in the brainstem is dead let's apply the UDDA let's apply the four fold analysis to the UDDA what is the death concept it is loss of biologic organismal integration what are the physiological standards it's either the reversible cessation of circulation and respiration or all functions of the entire brain including the stem what are the operational criteria asystole or coma plus brainstem reflexia and apnea and what are the tests these are clinical guidelines for determination of DNC and DCC accordingly so the question I want to pose is why should we accept the UDDA's commitment may we reasonably disagree in the Erologian sense and what does reasonable disagreement entail in terms of definitional choice so I would claim that there is very reasonable disagreement in terms of the death concept so the loss of biologic organismal integration only gets purchased if we assume that we human beings are organisms or animals an ontological position known as animalism which is a perfectly reasonable position however it's not the only reasonable position in fact I would refer you to Eric Olson's book about personal ontology where he lists seven or eight philosophically plausible views about human ontology even if we talk about general physiological standards and we endorse a biological organismal death concept then the appropriate physiological standard there should be the irreversible cessation of circulation and respiration I'm sorry the current standard is the irreversible cessation of circulation and respiration or all functions of the entire brain according to the UDDA however there is reasonable disagreement that this is an appropriate physiologic standard the actual physiological standard should be the irreversible cessation of the integrated functioning of the organism as a whole such that the organism no longer has the capacity to restore homeostasis and thereby resist entropy and I think I'm not saying that the current standard is right or wrong all I'm saying is that one can reasonably disagree with the idea that for example the whole brain is required or equals loss of organismal integration and the same actually the same critique can be applied to circulatory criteria what are the implications of reasonable disagreement one is that the state ought to refrain from imposing DMC DCC or even higher brain death and instead allow citizens to choose or set a default and allow opt out another implication is that the law as it currently stands the UDDA is unjustifiably coercing some citizens i.e. not justified by their own likes so here comes a precautionary argument that goes as follows premise one there is reasonable disagreement about whether a neurologic or a somatic standard and by neurologic I mean either DNC or higher brain or a somatic standard should be employed as the default definition premise two we should adhere to precautionary principle and acquiesce in the proposition that a neurologic or a somatic standard is valid in defining human and by valid I mean metaphysically valid Ergo whenever we argue in favor of one standard or the other or a death concept or the other we should assume that these standards may respectfully not be metaphysically valid for human death we are not thereby committed to accepting that such assumptions are true now in other words what this argument does is basically says that we do not need to affirm any given conception or standard as true only as the most reasonable available in light of our commitment to certain public political values this is sufficient to show why we ought to endorse the standard in question implication it might be possible to justify or prioritize DNC or DCC but only if one offers weighty reasons in favor without invoking validity or truth for that purpose in the last part of the talk I want to employ one method to do that and this is the veil of ignorance famous made famous by John Rawls now the original position is designed to be an impartial point of view the parties are deprived of all knowledge of their personal characteristics and their conceptions of the good they do know of certain fundamental interests they all have plus all kinds of general facts about persons and societies and then finally they are also aware of the circumstances of justice the fact there is moderate scarcity and limited altruism their interests are defined in terms of primary social goods but I also want to introduce another sale in primary good not specifically thought from Rawls that we have to consider bodily and mental health and integrity as necessary prerequisites to pursue any conception of the good so what the veil of ignorance does in the original position does is to put us in a place where we have to apply principles of decision theory now one rule of choice Rawls's favorite is Maximine we have to choose thinking about alternatives and choose the alternative whose worst outcome leaves us better off than the worst outcome worst outcome father alternatives now another option is by easy in decision theory or expected utility theory where one has to take into account the degree of uncertainty and factor it into one's utility function which is a preference ranking of outcomes and combine that with probability estimates of the various alternatives now remember that from the first implication that I started with that there should be choice or opt out the only rational strategy left here is maximizing expected utility and without belaboring the point we have to think about scarce resources and this is transplantable organs ICU beds and other resources that leads to a clear decision here the fact that death by neurologic criteria has an advantage in that sense makes it the normatively preferred default so let me take stock of what I've talked about so we started with three standards and corresponding criteria somatic and DCC whole brain or brainstem death by neurologic IDNC and then higher brain which I've not talked about and maybe if anyone is interested in the questions I can say why I do not think that it may be a plausible standard but it doesn't generate stable criteria at least in the current state of knowledge then we considered the neutralized dilemma that gave us choice or opt out as the first implication I offered then we entered the original position with a goal to argue for a preferred normative default which was to aim for a fair procedure and to simulate decision making under uncertainty after having secured opt out the only rational strategy the most rational strategy to follow is to maximize expected utility I argued that these considerations in conjunction provide us with most reason to choose death by neurologic criteria as the default definition and to complete my project in one slide I examine this choice by subjecting it to the test of public reason now public reason refers to later roles and he argues that public reason must be able to welcome a family of liberal conceptions of justice the essential normative conditions of a liberal conception being that one it specifies certain basic rights, liberties and opportunities number two assigns a special priority to these elements of a constitutional regime and three aims to provide citizens with a means to make effective use of their freedoms so the two claims I've made in this talk the first one was that choice or opt out should be allowed is in accordance or follows from the essential liberal conditions one and two and then finally favoring DNC or death by neurologic criteria as the default appeal to the requirement of agents for an adequate share of primary goods specifically the good of human health to effectively pursue their purposes whatever they may be and so favoring DNC follows essential condition three as it aims to provide citizens with a means to make effective use of their freedoms I even finished three minutes earlier so I hope at least in that sense there will be no complaints thank you very much I think we may have set a new standard at the end of the first day I do not believe the McLean conference has ever ended early or been ahead of schedule our final panelist today before our question and answer and we continue to welcome your questions in the chat function is Dr. Midsich he completed his fellowship at the McLean center in 2020 he is an assistant professor of medicine at the University of Chicago he is a gastroenterologist with a specialty interest in the management of inflammatory bowel disease and intestinal failure as a member of the nutrition support team at the University of Chicago Dr. Midsich participates and helps direct the care of patients requiring artificial nutrition support both enteral and parenteral his interest in the field of nutrition support includes identification of malnutrition and nutrition education he notes that the largest growing population of individuals utilizing parenteral nutrition on a national and international level our patients with active cancer and the outcomes related to the use of parenteral nutrition in this population are not well defined today Dan will present on the topic of parenteral nutrition in the setting of malignant bowel obstruction and present data from the University of Chicago thank you Dr. Toll and let me see if my slides come up here perfect and we'll start with the introduction so good afternoon or good evening at this point of the day and I'm going to try to stay on time so we don't go over on the first day of this I think symposium but my name is Dan Midsich and I'm an assistant professor of medicine and hepatology and nutrition at the University of Chicago I'd like to thank Dr. Siegler for the invitation to present here at the 33rd annual McLean Fellows Conference it is an honor for me to present at this conference on a topic that came early to me in my academic career more out of necessity than out of a true clinical interest however it really highlights for me the most important aspects of clinical care in an academic setting and that is that we are able to formulate questions and ultimately create solutions that we're seeing on a daily basis the topic that we are going to discuss today parental nutrition use in the setting of an advanced cancer I had a little exposure to four years ago when I joined the faculty while I came into the faculty with a strong grasp on parental nutrition use and the gastrointestinal disorders requiring parental nutrition or PN as we would say for short I had a little exposure to its use previously in the setting of cancer however coming to a world-class cancer center such as the one that we have here it should have not have been much of a surprise the managing parental nutrition in the setting of cancer would become a routine part of my practice now as an outline for the talk I always like to start with a strong grasp on the history of a subject sometimes I think it's actually important to look back into the history of a subject before we go and see what we're going to do in the future once we lay the historical groundwork and show various examples of how PN might be used in cancer I'll then introduce you to a common clinical scenario and that's something that we encounter on a weekly basis a malignant bowel obstruction although there's no gold standard criterion for the selection of patients in whom parental nutrition is most appropriate in the setting of cancer I'll finish the talk today discussing our approach here at the University of Chicago and some preliminary data that we have collected and ultimately questions that we'll continue to propose in the future now the development of parental nutrition really was a series of advancements dating back several hundred years however it was really since the early 1900s that we saw the greatest series of advancements that ultimately led to the development of parental nutrition first it was the use of sugar solutions administered intravenously and the diuretics that were required to allow the individuals to handle large volume loads administering proteins intravenously came about next and interestingly it was here at the University of Chicago that we had some of the first clinical uses of protein solutions in 1946 Dr. Brunswick from the Department of Surgery published on the use of intravenous solutions of gelatin which was prepared from pigskin and autoclave and used as a blood substitute in over 100 trauma patients with shock in the middle section in the mid 1960s Dr. Stanley Dudrick, a young surgeon at the University of Pennsylvania put together the series of advancements and published on the first use of parental nutrition in an animal model and subsequently in six adults with a range of gastrointestinal conditions precluding oral nutrition support the greatest achievement was then made with the use of parental nutrition in an infant born with small bowel atresia was ultimately kept alive in the hospital for over 200 days now this was described in the mid 1960s and it only took one year after the initial publication of parental nutrition that we have the first use of parental nutrition for cancer in the home setting Dr. Dudrick and colleagues in 1968 encountered a 36 year old female coming from a city 120 miles north of Philadelphia with metastatic ovarian cancer the hospital apparatus was set up for the patient and her family to administer PN in the home setting where she was ultimately built to survive for six months now this naturally led to the question on the use of parental nutrition as a concurrent therapy with chemotherapy for the management of cancer understanding the morbidity of malnutrition in this population several studies started to come out as early as the 1970s describing the use of parental nutrition in the hospital setting in conjunction with chemotherapy first at the University of Pennsylvania Schwartz and colleagues described 12 patients with wide metastatic disease that were otherwise considered to have risk factors for poor outcome with standard chemotherapy these patients were treated with the therapies at the time 5FU encyclophosphamide and among the 12 patients 7 had a weight increase 2 had a measurable reduction in their tumor size and all patients had an improvement in oral intake and pain 5 years later Dr. Federico Bajetti at the University of Milan described essentially a small randomized study on the use of low calorie solutions which were basically sugar infusions of 500 calories or hyperalimentation where the patient was receiving 40 to 50 calories per kilogram of body weight that we would think in excess of calories today in this small randomized study the majority of individuals given the high calorie parental supplementation gained weight or had an improvement in their albumin stores and this leads to the third box which for me is ultimately the gold standard in the study of nutrition support which is when you can make a case for enteral or parental nutrition demonstrating improvements in hard outcomes and this came to us from the University of Minnesota in 1987 where our RCT was performed providing parental nutrition or basic hydration for one week prior to and over the duration of a stem cell transplantation PN recipients demonstrated overall improvements in survival and disease free survival now since the 1970s and 1980s the fields of nutrition support and oncology have gone in somewhat opposite directions with respect to oncology treatments have become more directed more effective, less toxic and with respect to the delivery of parental nutrition there have not been as many groundbreaking changes we have fewer catheter related bloodstream infections today and less toxicity from the therapy primarily due to the use of lower calorie solutions and safer lipid emulsions but given the overall different trajectories we probably should have been envisioned that parental nutrition was not going to be a standard part of chemotherapy regimens for long a number of studies were published in the intervening years and by 2001 a landmark meta-analysis was published by the American Gastroenterological Association including over 4000 patients in 82 randomized controlled trials showing a net increase in infectious complications with parental nutrition in the setting of cancer this was really a nail in the coffin for the use of PN given advances in the management of cancer patients parental nutrition was no longer a novel therapy and clear improvements in outcomes were hard to come by if anything, if you ask most physicians or surgeons in practice today they would quote the most common outcome of the study which is that parental nutrition leads to infections and is dangerous now I had to change the title of this slide after talking to my mentor here Dr. Carol Samrat who remarked to me that the use of parental nutrition in the setting of cancer over the last several years reminds her of her time in training in the 1980s parental nutrition was commonly used in the setting of cancer we're reverting to more common use of parental nutrition despite the lack of strong data supporting the use of parental nutrition in the setting of cancer the incredible improvements in cancer therapies has led us to a resurgence in the use of PN in an attempt to save the most ill and dying patients as a gastroenterologist I like to revert to at least one clinical example and for me it comes from a phase 2 study of an immunotherapy for patients that have already failed two lines of chemotherapy for gastric cancer it does not take much experience in medicine to know that this carries an incredibly poor prognosis from the immunotherapy study in this case it was Pembalizumab 11 patients had an objective response rate most would argue that that is not great 1 in 10 but among the responders the minimum response was 8 months adding 8 additional months of survival all but in a small subset is really extraordinary and something that most patients would desire no this leads us to a little crossroads again which is when is it safe and appropriate to administer parental nutrition with chemotherapy I don't have an exact answer and by the end of this talk I'll try to provide the basic outline that we are using here however I think there are two main pathways to get to this answer the first is through the improved collection of clinical data the meta-analysis on parental nutrition came to us from 2001 and clearly updated literature is needed on this topic as the cancer therapy is improved and secondly we need to improve the training in nutrition support rather than hide it under the pharmacists and dieticians in the hospital patient setting we need to broaden exposure to nutrition support in medicine surgery and the various sub-specialties of training in order to familiarize physicians with its use, complications, management and ultimately to improve the discussion surrounding the use of parental nutrition with patients now let's enter the second part of the talk and describe a more common clinical scenario in general I'm going to avoid the topic of parental nutrition as an adjective chemotherapy and I'm not supporting its use and no data showing that patients can improve their functional status on parental nutrition in order to tolerate chemotherapy probably a more common clinical scenario is the development of a malignant bowel obstruction this is something that occurs in 3-15% of all cancers most often those cancers that have metastatic spread within the abdomen most commonly it will occur in ovarian colorector or appendiceal cancers in the miliary spread of disease throughout the abdomen causes essentially a lack of flow through the intestines vomiting weight loss and a complete inability to tolerate oral intake the pattern of spread is such that it also limits the possibility of a simple surgical resection or diversion in this setting parental nutrition use has been described and is in general associated with a survival ranging from 5 to 20 weeks limited data is available on overall patient experiences or the complications of therapy and a single study from Europe suggests at least a maintenance of the patient's quality of life now how can we determine which patients should be considered for PN use in the setting of a malignant bowel obstruction this can be a difficult challenge nutrition support at the end of life is fraught with symbolic and emotional feelings that may not necessarily be applicable to other forms of medical therapies families may believe that the nutrition and hydration enhances the effectiveness of medical therapy which in this case would be the chemotherapy and makes the patient feel better physically and mentally for patients nutrition is equated with survival and a transition from an artificial means of nutrition support to an artificial means of nutrition support is a transition in their care strategy from a curative intent to a failure of the standard medical therapies as physicians we then have a significant influence on both patients and their families regarding the role of artificial nutrition at the end of life it's been previously shown that physicians who do not participate in the care of terminally ill and dying patients are actually more likely to consider artificial hydration or artificial nutrition necessary and we frequently encounter this among trainees in the hospital when a technique or support is recommended or started is difficult to turn back therefore improving the knowledge of nutrition support to other disciplines in medicine will allow us to improve our conversations and recommendations to patients so what do we have done here at the University of Chicago we're largely led by one of our surgical oncologists Dr. Kieran Taraga we've gathered the various stakeholders in this discussion to include our nutrition support team oncologist surgical oncologist dietician support staff and palliative care have created a patient management pathway in order to streamline the patient care in the hospital now I'm not saying that this is a solution to all of our problems but at least it's brought together the major stakeholders in order to increase communication amongst ourselves and ultimately to help guide the patients in their decision making process together we help put out a consensus statement broadly on the management of parent meals surface malignancies and here we shared the latest research in order to guide the most appropriate therapies and actually we discussed the management of a malignant bowel obstruction and the use of parental nutrition largely supported by studies from Europe we broadly defined the appropriate use of PN to include individuals with an expected survival of two to three months and this comes to us from data from individuals undergoing hunger strikes where they expected duration of survival based on the expected duration of survival without adequate calorie intake we also focused on the favorable metrics of survival to include performance status and availability of standard chemotherapies and relative metrics such as age and ability to perform parental nutrition in the home setting as part of the analysis of this program we've collected historical data that we will use to compare over time and found what would be expected what would be expected which was a median survival of 142 days a 30 day survival of 58% 90 days survival of 38% and 188 days survival of 23% in this highly selected population finding an individual predictor of survival was rather hard and the only factor that seemed to pretend improved survival was appendiceal cancer the most striking feature however the study was the complications of the therapy and ultimately I hope that this will help us understand the patient experience better on average patients experience two readmissions and 29 days spent in the hospital which may not sound like a lot and when you factor that into 140 day overall survival this is one fifth of their remaining time alive and from the bottom table you can see the complications of a rather serious to include catheter related bloodstream infections and additional episodes of sepsis most often from introdominal sources of infection and the next slide there we go we hope to continue our data collection over the coming years and ultimately try to paint this patient experience in a little more detail from an understanding of the patient's quality of life ultimately to improve both our care coordination and the discussions with patients understanding the use of parental nutrition both from a medical standpoint and from the patient standpoint will allow us to increase our ability to perform shared decision making now for our last slide by no means am I trying to make this problem sound like it has a simple solution each case is incredibly unique and complex and I could give a number of patient examples that extend outside of the balance of the simple rules that we just provided today what this process has taught me is that predicting death is an incredibly difficult and a more than ball obstruction predicting complications can be just as fraught with error ultimately engaging with the patient earlier in the disease course and getting to know the patient before the initiation of parental nutrition for me comes with the best outcomes and in closing today I really just want to leave you with two minor points two little minor points there at the bottom of this slide and these are two references and two great articles that were published in the New England Journal of Medicine one from our moderator Dr. Toll now several years back and who should have the discussion about end of life decision making with the patient and for me it's really the person that has the most familiarity with the patient even if it's just at that time that can be the gastroenterologist, the oncologist, the family care provider what probably matters most is that the physician be there for the patient when they need them most and have a relationship with the patient and lastly would be a piece that I just came across published in the New England Journal last week from a primary care physician in Boston a fragmentation of hers that was just diagnosed with pancreatic cancer and she discusses the increased specialization and fragmentation of medicine what caught my eye in the piece was actually a quote from an economist here at the University of Chicago Dr. Kevin Murphy who was talking about the division of labor and in that quote he says the specialization and division of labor depends on the coordination costs the fragmentation of care particularly at the end of life is driving up our coordination costs and even through processes such as the ones that we are introducing here at the University of Chicago we can reduce these coordination costs and ultimately improve on the patient experience and with that I hope I was able to stay on time and I'll turn it back to Dr. Toll Thank you, I'd like to bring our panel together and have some interesting questions in the chat box and welcome everyone the question that received the most votes I'm going to ask Dr. Schiedemeyer to help me with that question is some hospital lawyers don't allow polls to be honored if the surrogate disagrees with it even if the patient wishes are clear to the physician how can we overcome this this sounds like a call for footsteps and I thought maybe you would take a swing at this Dr. Schiedemeyer Thanks that's it just seems to really follow what we were talking about which is if you know what your person would have wanted it should keep you awake at night to honor that so we have and I would actually I was fairly strong back when I was practicing to say to patients families who are not honoring their wishes it really says right here in this power of attorney in this post if you will it says right here they don't want this how do we square that with what we're doing I just think it's really we need to sometimes I would say maybe we need the secondary power of attorney to take over if you can't honor the wishes and once or twice I was able to get that so I do think they're not doing their job if they're not tracing those footsteps that's just they're doing the wrong thing maybe for the right reasons so I think it's our job to just insist that they stay on target so what would this as Mark always says in court I'm not sure if I'd be the last one standing you see who's the last one that stands after all the arguments I mean what's the use of having a power of attorney if you can't have it honored what's the point so very tough though isn't it what are your thoughts well fortunately this is infrequent sometimes there's a preliminary just panic and then further conversation and it's really out of shock or struggle getting bearings that's a very different situation than the person who stays committed to a different path the level of angst of the healthcare professionals is off the scale in these situations it is extremely high in the level of moral distress when there is documentation there's every reason to deeply believe that the individuals values are indeed correctly reflected in documentation and often perhaps conversations that further validate what's on a page those situations are fairly rare and I agree with you that in some of them were able to to say look what's here let's talk about why this seems so different from what you're saying and literally I love your language let's follow the footsteps of the person together and see why what you're saying is different once here more often than not that fixes the problem but usually when the lawyers get involved it's that very small number that can't seem to find the footsteps and that are not necessarily acting in behalf of the person that they're appointed to represent but instead charting their own path in a very different set of footsteps I want to be sure though that we realize why we have empowered surrogates so much because so often there are changes in orders near the end of life they reflect changes in health status and we do not want to lock on to something never to be able to change it as health conditions change and perhaps the person wishes to set more limits the tradeoff is that we have a couple of cases a year two or three where we're at loggerheads with the surrogates that we have therefore empowered as the price we pay for being able to continue to make changes near the end of life once in a great while the surrogate may need to go to court the surrogate may need to be replaced but in general those numbers are actually quite small when we spend the time to help the patients and families get on the bus with us thank you there's a question from Dr. DeAngelo's to Dr. Testa as a graduation requirement to be moved out of the surgical ethics panel I suspect there's a bit of mystery behind that I'm not sure I just noticed that it was the first time that I was not in the surgical ethics but as everybody knows in this crowd at least I'm a transplant surgeon and I like to raise issues that I have to do with my daily life the teaching I got at the McLean was very clear about the fact that you don't think of face value but you try to understand them and I'm now saying that the way I understand those things is the right way or the correct way or the only way but at least I was told to investigate thank you the next question is for Dr. Alzaridis and it is how do you test for loss of higher brain function I can see myself donating my cerebral once my cerebral hemispheres aren't engaged before my brainstem is gone thank you for this question I'm glad someone asked I don't think it's an easy question but all I'm going to say about higher brain death is that I think the greatest problem is the problem is not conceptual the problem is empirical and epistemological so to talk about higher breath definition it should be based so the physiological standard should be the irreversible loss for the capacity of consciousness and at this stage of knowledge and at this stage of technology the ability to detect that to be certain that the capacity for consciousness has been irreversibly lost is very much imperial in fact what used to be known as the vegetative state which for example would be exactly that patients who have lost cortical function but they have preserved brainstem function and they have been considered as irreversibly unconscious it turns out that a lot of these patients maybe 10 or 15% of patients who appear behaviorably I mean from behavioral criteria to being a vegetative state they do have covered consciousness so if you do functional MRI or you do advanced neurophysiology you will detect preserved at various degrees preserved consciousness also known as functionally locked in so the problem is not just to repeat not conceptual it's potentially a plausible standard however I don't think that we have the means to apply rigorous criteria that can identify that state of the capacity for consciousness and so the risk is that there is a great potential for mistake and so I do not think that this standard can generate stable criteria and if someone wants to go with higher brain I think the safest place to draw the line is death by neurologic criteria in their current form thank you the next question is for Dr. Mitzic it's hospice patients there's a significant variety of whether total parenteral nutrition can be continued by a hospice agency what do you think about total parenteral nutrition in hospice patients I mean it's completely variable and even here we've tried to kind of get a sense as to which hospice is potentially offered and which hospices don't personally I have some difficulty with administration of parenteral nutrition in the setting of a hospice because at the same time you're at times using very high concentrations of potassium and infusing it directly into the bloodstream by a central catheter performing parenteral nutrition without monitoring can be difficult now at the same time we have stable parenteral nutrition patients that get annual labs stable that they are and now that we see some of we have patients that have been on parenteral nutrition since the 80s early 90s they are reaching other conditions and potentially even dying from those so it's something I've gone back and forth with I don't know that I have an incredibly strong feeling on incredibly correct solution as to which way should go but was really never been compared particularly at the end of life is going to be high calorie versus low calorie solutions giving something I think even if it contains some dextrose primarily the electrolytes I think is definitely reasonable so at a minimum we at least try to continue with hydration in patients that cannot continue parenteral nutrition in the setting of hospice doing everything without monitoring I think can be difficult minimizing what we put into the parenteral nutrition to make it look more like hydration the next question is for Dr. Lazaridis and it's is fetal growth possible if the mother is dead by any criteria yes but by death by neurology criteria and there are reported cases in the literature where a pregnant woman has been declared dead by neurology criteria and pregnancy has been supported and continued with the goal of delivering the baby so the answer is yes and potentially I would venture to say that obviously you could support a pregnant patient with ECMO and sustain the circulation without native circulatory function and respiratory function and have the same outcome thank you there's a question about pulsed and the challenge of the healthy 65 year old and how different states are addressing that issue and basically the overused of pulsed or the incentives or for example having a requirement to have a pulsed form to be in a particular facility those kinds of challenges I'll dive into this question after I recruit support from Dr. Schiedemeier to ask if he has seen any problems in Wisconsin with the overused of pulsed and people who are too healthy Susan I'm sorry I can't I don't know the answer to that I don't know where we are with pulsed now and I will plead some ignorance from being retired so I don't know the answer to that but I do appreciate as a hopefully somewhat healthy 60 some year old 66 that if if there were incentives for me or for my doctor to complete a pulsed it would be I do think I would have different feelings now than in 10 years so really valid issue of the healthy 60ish person I don't know when it seems to me at least in patients when I've seen that people really do start to go downhill in their 80s and the physiologic reserve is just you know they just go downhill whether they think they do or not so I I don't so I don't know the answer to that but I would say the clock is ticking after your 65 after your 65 the clock is ticking well I think another way to flip the question is to say what good does it do to have a pulsed form when the only thing on it is full code full treatment and there are no other categories on the Oregon pulsed form so if you mark full code full treatment you get care that's any different than you would have gotten with no pulsed form at all and are we in some ways short circuiting a conversation that might need to happen over time in greater depth so that would be my biggest concern about completing pulsed forms early on for full code full treatment in people who are on the healthier side and not engaging in deeper conversations I don't I fail to see how this will benefit them in any kind of change in their care and may cause some challenges if their health status were to change and now we have a full code full treatment pulsed form if they haven't had in depth conversations with families we have seen a certain amount of anguish looking at this full code full treatment pulsed form the person has now had a massive stroke for example the situation has changed and there is a heavy load to be carried by families if there has not been a lot of advanced care planning about contingencies if a surrogate has not been legally appointed we have seen times where it appeared to increase the burden on surrogates so another and we are getting close to the end of our time a question not that one there have been several questions about muddying the line between life and death a donor close to death is not dead but could be an unwelcome new frontier in ethics perhaps a comment about that Dr. Lazaridis I think Dr. Testa should go first I think his talk was closer to that and I am too scared to answer first Dr. Testa please take this one on I am not sure if he should be unwelcome I really don't understand that concept I refute that concept actually because it goes against most of the things that you have been discussing about respecting wishes and I think we should reframe them if you ask me my wife knows that if tonight going home I am going to be hit by a car I am going to be in a status where I can be a donor after cardiac death I am going to go to the operating room I am going to put under anesthesia I am going to donate my organs so much that they will be as good as possible to whomever is going to receive my organs and I am not the only one with things like that so I refuse that this is unwelcome I will open a conversation about should be unwelcome and why we shouldn't do something that is good for hundreds of thousands of patients Thank you We are at the end of our time we have had a very vigorous panel I have appreciated all of the presentations today and