And I'm going to be introducing Dr. Joseph Finns from Cornell University. Dr. Finns is the E. William Davis Jr. physician and the Professor of Medical Ethics, Chief of the Division of Medical Ethics, Professor of Public Health of Medicine and Psychiatry at Walde Cornell Medical College. That doesn't fit on one line. He serves as New York Presbyterian at Walde Cornell Medical Center's Attending Physician and Director of Medical Ethics, as well as the Rockefeller University Hospital Senior Attending Physician. After graduating from Cornell Medical College, he completed residency in fellowship training in internal medicine at the New York Hospital Cornell Medical Center. He has pioneered the field of neuroethics and his research interests include palliative care, issues in ethics and policy and brain injury, disorders of consciousness, and research ethics in neurology and psychiatry. Among other positions and honors, he is currently President of the American Society for Bioethics and Humanities, a worried award recipient and former governor of the American College of Physicians, and a member of the Hastings Center Board of Trustees, where he chairs the Fellows Council and has served as an associate for medicine. Wow, that was back in the 80s and 90s? Yeah, in the day. Anyway, it is my distinct pleasure to introduce Dr. Finns in his talk today. He's going to be severe brain injury and organ donation, a call for temperance. Well, thank you very much. Thank you. Thank you. It's so good to see so many friends in the front row here. And especially good to see Dan Solmezzi from New York, and your gain was our loss. And we still miss him in so many venues that we shared together. And I'm really delighted to be here. And I know I heard that Mark was unable to be here, but I just want to extend my congratulations to him and to all of you for this 30th annual, 37th annual faculty series, which is kind of an amazing institution. And I call this slide afterthought because I'm kind of coming after your whole year and discussion. And Mark was in New York earlier in last year, and he said, you got to come and do this thing and talk about this. And I said, well, I don't really know anything about organ transplantation. I just kind of interested in brain injury and disorders of consciousness. And I've had some issues with transplantation. And he said, no, no, that would be perfect. That would be perfect. So I kind of feel like Daniel and the lion's down here a little bit. But I hope, and I look at Dan here for the biblical reference to make sure I get it right, that I get out of the pit OK and nobody kills me. I feel like Daniel unscathed because I was praying to the proper God. So in the spirit of open discourse and an idea of just kind of challenging some of your thoughts about transplantation, I'm going to try to talk about, Lenny and I were talking to this beforehand, this kind of complex web that brings an organ donation, brain injury, brain death, the right to die, and see how we've kind of gotten ourselves into a bit of a mess as the science has evolved.  And it would be impossible to come to Chicago into the Claim Center and have a talk that didn't have implications for clinical care and clinical ethics. So I'm going to dive right into it. So I'm going to bring us back to 1968, which is a time you probably have all talked about, and some of the confluences. You know, in 1968 we had the first heart transplant down in South Africa by Christian Bernard and the ad hoc committee at Harvard established the brain death criteria which had an instrumental purpose to allow for the retrieval of organs from people who were brain dead, and that was defined as irreversible cessation of whole brain function that is both the brainstem and the higher cortical functions. And this problem category was necessitated, necessitated, I should say, by the survival of people who otherwise would have died before there was ventilatory support in patients who did not have an intact brainstem. If you didn't have an intact brainstem, you wouldn't have autonomic drive to breathe, and you just die, a conventional cardiopulmonary death. But with ventilators, people like that could survive or survive in quotes. And this report was written by the famed bioethicist and anesthesiologist Henry K. Beecher at Harvard for whom the highest prize of the Hastings Center is named the Beecher Award. And the basic framework was not to have good organs go to waste. And here's what Dr. Beecher wrote in an article in the New England Journal at the same time in 1868 in which he is very utilitarian about the meaning of lost consciousness. If your consciousness is lost, in a sense, you're dead. You're dead to the point where your life has lost its meaning and we should be able to retrieve organs from what he called the person with a hopelessly damaged brain. And it was viewed as a trade-off. We either squander organs for life without consciousness or give them to some worthy soul who needs a transplant and not to retrieve organs would have, as he wrote, desperately radical results. The curable, the salvageable can thus be sacrificed to the hopelessly damaged and unconscious who consume the time and space and money better devoted to those who could be helped to pretend that no such alternative exists is nonsense what one gets the other is deprived of. Notwithstanding he ended a sentence with a preposition. The thought here is the editors in the room are going, we wouldn't accept that. The thought here is that it's a zero-sum game and by keeping these people alive we're letting these good organs go to waste. And what's interesting here is the emphasis on consciousness as that which really makes life life, makes for personhood and all these other things and it's such an important construct that when you lose consciousness, when that is lost, the traditional physician primary fiduciary obligation to the patient is so attenuated that we turn a patient into a donor, into an instrumental object for the retrieval of an organ. And yet it gets more complicated because there's another category where you can lose consciousness and we don't think of them as donors. But we also have a state that has also been historically devalued and that's the vegetative state and the vegetative state is a state in which the brainstem is intact but there's no higher cortical function. That's the simple definition. We'll come back to that as science evolved. So the other challenge is how consciousness and the vegetative state and the right to die all kind of came together in a confluence that has led to certain practices and certain biases, namely the using of people with severe brain injury as sources for organ harvest. So we all know this part of the story more or less I guess but bioethics since the 60s has really been predicated on evolution of a notion of self-determination and autonomy and it really evolved as a negative right to be left alone and in the Quinlan case that's Karen and Quinlan, the right to die. And the right to die in that case is a woman who had probably a drug overdose at a party in New Jersey and was left in the vegetative state and the judge used, legitimated that decision, the withdrawal of care because it was the ultimate in medical futility. Nothing would get better and he noted in his report in his opinion the loss of her cognitive sapien state. Now he asked Fred Plum to examine Karen and Quinlan as the court-appointed neurologist. Dr. Plum was, Dan and I had him as teachers at Cornell and Dr. Plum along with Brian Jeannette who was a neurosurgeon from Glasgow, Scotland who was originator of the Glasgow coma and Glasgow outcome scales wrote a paper in 1972 in the Lancet about the vegetative state or a syndrome without a name and they describe the vegetative state as a state of wakeful unresponsiveness. That's a parsimonious in a Pellegrino's sense, this is a double joke here, a Pellegrino's sense of just economy of phrase, right? Wakeful unresponsiveness.  So it's the arousal of the brainstem without the higher cortical function, okay? And Dr. Plum was asked by Judge Hughes to testify and here's a picture of Doc Fing because she was in the vegetative state and if you read the decision it almost looks at the vegetative state as if it was a terminal state like a cancer patient in pain dying of a terminal condition. But he does make that distinction and point to the importance of loss of the cognitive or sapient state.  She breathed, right? Because her brainstem was intact and suppose she hadn't breathed because she didn't have a trigger for respiration she'd probably then have had a consensus and apnea test to be brain dead and Dr. Plum once told me, he said, Joe, I knew that she would breathe when they took her off the ventilator and I said, you know, Dr. Plum was shorter than I but I looked up to him and I said, Dr. Plum, how did you know? He said, I took her off the ventilator as part of my neuro exam. And Hughes wouldn't believe it. Huh? And Hughes wouldn't believe it. Yeah, and he did that to make the distinction between the vegetative state and brain death. So I think the statute of limitations are over but I think as a professional, we talked about professionals in last year, he was asked by the court to do his exam and the only way for him to definitively know that she wasn't vegetative versus brain dead or that she wasn't brain dead versus vegetative was to do the apnea test. Now in the ensuing years since the Quinlan case which is 1976, you know, we've gotten very comfortable with the right to die and, you know, the vegetative state became the ultimate in medical futility. Nothing can or should be done. Injuries are immutable and I think we all kind of, those of us who grew up during this in the immediate aftermath of this era saw the vegetative brain as a kind of gelatinous gel. You all remember the, you know, those of us who read the autopsy report about Karen and Quinlan, she had hydrocephalus ex vacuo, you know, her venerals were expanded, the cortex had thin, the weight was half of the normal 1300 grams and that's our sort of image of the vegetative state and I recount some of this history in this book on palliative care that I wrote a few years ago and this notion of the vegetative state is just this ultimate medical futility held in cruzan and it even held in shiva with other pressures. But there's also been kind of on the quiet side, this is really my focus, a neglect syndrome for another population that's sort of been out of our gaze and how many of you guys know what I mean when I say neglect syndrome? If you have a parietal lobe lesion you just don't see half of your visual field but you don't know that you don't see them. So there's this population out there that exists that has always existed but we didn't know they were there until it was pointed out to us and we moved our head and we overcame our field cut and our field cut was for the advent and I apologize that word here may have other meanings for your conference next week of the minimally conscious state, okay? And this is a state that to the untrained eye is indistinguishable from the vegetative state but these people are conscious. They have attention, they have memory, they'll grasp for a ball, they'll say the occasional word but they do these behaviors episodically so if I was a family member and I saw my loved one doing this and I asked Dr. Salmezi to come back and verify that what I saw was real, Dr. Salmezi would come, the patient would not repeat it. That also too is the biology of the minimally conscious state and Dan would probably, you know, even with as well-intentioned good guy as he is, he'd say the family's having a hard time coming to grips with the fact that the situation here is really futile but the minimally conscious person is episodic, it's kind of like a flickering light bulb. The fact that it can flicker means that some circuit is intact versus a light bulb that just is totally not working but it doesn't flicker on command. So what has happened and over the years is we have begun in the, you know, the legacy of Fred Plum begun to work with this population and try to understand who and where they are and in that process I've come to the sense that we need a more prudential ethic that certainly has to be aware of this interplay between severe brain injury, the right to die and organ transplantation and be a little more cautious about who our candidates are and how we make these decisions because from my experience sometimes it's a little too expeditious and I think we need a more prudential ethic so I'm going to argue for that in the affirmative. The basis of my work is an IRB approved study of some 40 families that have come to Cornell and Rockefeller for a multimodal assessment of patients of their loved ones with disorders of consciousness they typically come for three or four days they get an FMRI, they get EEG, they get a PET scan and these are people who are in the vegetative or minimally conscious state and we're trying to figure out mechanisms of recovery we have a room at Rockefeller a control room at Rockefeller we monitor all their movement and their EEGs, our continuous EEGs and in addition to my role with that I also have done interviews with some 40 families learning about their experiences in the healthcare system and we have some 3,000 pages of transcripts and I wrote a book which I hope will come out at the end of this year called Rights Come to Mind, Brain Injury Ethics and the Struggle for Consciousness from Cambridge and that summarizes my findings and I have HIPAA coverage so I can use their names freely and some of the characters in the book are Terry and Anjali Wallace I'll tell you about him in a minute and Maggie Worthing who was a senior at Smith College when she had a brainstem stroke that bled up into her thalamus and her mother Nancy and I tell basically Maggie and Nancy's story and interspersed the other 40 families to fill it out and to a person and to a family and to a perspective of a race or ethnicity of rich or poor or black or white, Hispanic people encounter a disinterested healthcare system a kind of stereotypic trajectory of nihilism and neglect a really static view of brain injury once you're severely injured you're not going to get better not the dynamic brain that we've come to understand and through this scientific knowledge and for our purposes this prompts what I think to withhold or withdraw care and to donate organs Dan and I were both PDIA faculty scholars I think I have palliative care credibility and I think we've gotten a little too ideological about it we need to be more cautious about certainly as it relates to people with severe brain injury sometimes they get premature palliative care recommendations and they're often discharged while medically unstable so what I'd like to do now is kind of take you through some of this trajectory and hope to sort of flesh some of this out with some primary evidence so Lee Woodruff, who was the wife of Bob Woodruff the ABC News correspondent wrote a book about her husband's brain injury which was a blast injury and a shearing injury of his calvarium from an IED in Iraq and she talks about in an instant everything changes this immersion in new language and new nozology we know you have gallbladder it's infected, you have cancer, we understand that but you say to somebody your husband's in a vegetative state or your husband's in a coma or your husband's brain dead people have no idea what you're talking about and one of my interlocutors was a man who's a bond trader in Boston a smart guy and he said, look, let's face it it's a complicated area I know a lot about the bond market but I don't know much about the brain I mean he's overwhelmed by the phrases and this brand new bit of information I think the first point is this imposes an ethical obligation upon us to know what we're talking about and to use our power wisely and make sure people understand what the sequences are and what the diagnoses are because they're very vulnerable to this knowledge deficit and we also have to think, and I'll say a little bit later when we ask them for organ donations we have to be aware of the shock and trauma that they've just undergone because they may be exceedingly vulnerable at that moment so that and yet this is what we get in the literature from a doctor Vigix who runs the neuro ICU up at the Mayo Clinic in a paper called the Family Conference End of Life Guidelines at Work for Comatose Patients now coma we'll define just quickly is an eyes closed state of unresponsiveness the eyes open you're vegetative eyes closed state of unresponsiveness and it's a self-limited state of a week or two so these are recommendations that Dr. Vigix confidently shares in the official journal of the American Academy of Neurology the attending physician a patient with a devastating injury needs to come in terms of the futility of care families who are unconvinced they should have diminished expectations and that withdrawal of care or life support or abstaining from performing complex interventions is more commensurate with the neurologic status a very categorical statement and here's something that that came up in an interview that that I had and it's not the only one but it's the one that is perhaps the most graphic this is a man who was hit as a pedestrian and route to going to basic training to become a Marine in Philadelphia he was going to go to Iraq and the mother says and I actually had a neurologist tell me your son is basically just an organ donor now and I said when did that happen within the first 72 hours she said and he said well he doesn't have the reflexes of a frog I responded as you might in disbelief he doesn't have the reflexes of a frog yes of a frog he said you should really just consider him being an organ donor that's the best thing you can do for your son and the mother said I completely disagree with you I'm not making him an organ donor go back in there and do the best you can I think it's kind of a you know I don't you can't make this stuff up I have the tape I could play it for you it's true so how do we explain this how do we understand this I think a lot of it is the confluences of all the social backdrop we just talked about but I think it's also this I don't think it's the mal intent of the ER doc who's I don't think he's trying to be a bad guy but I think that most of us who don't work in this area in brain injury see the loss of consciousness as the end game of a disease process most DNR orders for example are written by surrogates when when the patient loses capacity or loses concious ability and it's usually the gig is up end stage oremia, end stage heart failure end stage cancer there's a loss of consciousness so the doctors drawn upon an analogy to their acute care experience see this loss of consciousness as if it were the end of the game when in fact and would be the usual prompt for a DNR discussion when in fact in brain injury the loss of consciousness could be the end of the game but it also could be getting a recovery and and it's also this notion that this state is not going to be transcended it's not going to change that this injury as bad as it is now it's not going to get better but for brain injury the first day is often the worst day and then there can be progress but this is not an old story this notion of the static brain or the dynamic brain it goes all the way back to a fight between Galen and Hippocrates and this is the cathedral ceiling in the Montreal neurologic institute designed by Wilder Penfield himself who was a neurologist neurosurgeon and a legendary he mapped the homunculus and legendary epilepsy surgeon and the Montreal neurologic institute was the model for the NINDS at the NIH and what you see here at Golgi cells early images of the brain in Egyptian hieroglyphics and in Greek you see around the circle there a statement by Galen in refutation of the Hippocratic aphorism that all brain injuries are invariably a fatal and a bad deal and Galen says but I have seen the injured brain healed and this is this tension between how we look at brain injury that I think we need to overcome because the brain is really far more dynamic than we've ever imagined now Dr. Plum this is an earlier picture of Dr. Plum just to show his intensity because we're not sure what he's going to do with this this hand but back in his in the mid-seventies I went through his archives I mean his archives from the mid-seventies went back through them a couple of years ago found this statement about the importance of discerning the vegetative state as a kind of a futility situation was to risk stratify other patients who might actually do better it wasn't all about futility it was also about utility and Fred wrote we've studied 100 patients within 24 hours what we can tell by their neurologic signs who will not recover above a vegetative level who will do well this leaves a middle group for whom more information is needed but we're presenting every effort to know their maximal potential and how to judge their early signs so he intuited that there were some patients who looked horrible at the beginning but who might actually have a different trajectory that there was going to be variants in outcome key variants, key point one point, you want to remember one thing from this talk traumatic brain injury people do better than anoxic brain injury if that's all I leave you with, that's enough okay, but here's the case that was kind of the paradigm shift it actually says paradigm shift okay, it was Terry Wallace have you ever heard of Terry Wallace? so Terry Wallace was a young man who had been in a car accident in 1984 when in 2003 he had been in a vegetative state and a coma had been described all sorts of ways but the operative diagnosis was the vegetative state and in July 2003 while he was in custodial care he woke up or started talking he said mom and then he said Pepsi and he developed greater fluency in his world Ronald Reagan was still president he was locked in 1984 he was like in this eternal present how do you like these religious I wrote a whole chapter on Augustine but imagine not knowing which version of yourself you are you know who you are but are you the 1984 version or some other version of yourself and the reality was that this is Terry here that if you go back as I did and look at his chart there were behaviors in the chart that suggested that he had been minimally conscious and not vegetative but the minimally conscious state did not exist till 2002 in the literature so he had a brain state that didn't yet exist so how could doctors diagnose him that way so the family said I thought he did this I thought he did that they told him don't worry about it vegetative is not going to get better they asked to be seen by a neurologist for 19 years it wasn't going to be covered they wanted to scan it wasn't paid for I've interviewed Mrs. Wallace at Great Wayne turns out actually in other papers since then that 30 to 40% of patients with a traumatic brain injury who were nursing homes who were diagnosed as vegetative were probably not that's a huge diagnostic error rate so and he developed contractures even as his brain started to get better at one point I was trying to get him rehabilitation through his congressman Marion Barry from Arkansas not the Washington DC mayor from the first congressional district and I called up their house and I was speaking to Mrs. Wallace I said what's his social security number for constituent services and she told me but I heard a voice in the background and I said Mrs. Wallace was that Terry who told you the phone number the social security number we thought he was wrong we looked it up he was right and he's continuing to improve he now knows the song bad boys, bad boys what you're going to do now that may not be an improvement actually but it's important because that song didn't exist when he got hurt but the most chilling part of his story was back in 1991 or two or something it's in the book I don't remember exactly when and Mrs. Wallace gets a call from the nursing home and they say you got to come in Terry's just not right now the nurses in this book are often intuiting and seeing things the doctors have been trained not to see but the nurses saw it said Terry's not right they're not into the rigid categories of what brain states are and this is 10 or 12 years before the minimally conscious state is a real category so she walks in and Terry isn't right he's like kind of like he's kind of like bug eyes and the patient can't be frightened that's not part of the category but what had happened his roommate, he was in a nursing home with an elderly man and his roommate had asphyxiated himself in the sheets from his dementia and he watched this man die now I don't know what Terry Felter thought and when he recovered more he doesn't remember this because the hippocampus and the memory areas and the brain are exquisitely sensitive to hypoxia and to trauma to that part of his life but he experienced something and it was only years later in retrospect that it became obvious that Terry had been minimally conscious throughout that period of time so here's the amazing thing a paper by Henning Boss my colleague, Nick Nicola Schiff who is my partner and neurologist partner this is a paper that was in the Journal of Clinical Investigation in 2006 using diffusion tensor imaging which is a kind of fMRI study that looks at the, it's a kind of tractography looking at individual fibers and I want you to focus on the red in the screen here and the red fibers are left to right lateral fibers and you see here just to give you a sense of how badly injured he is this should be his corpus callosum and it should go all the way back in red but only the front part is intact but what you see here his occipital lobe here and up here circled are a set of fibers that normally we don't have in our brains and then 18 months later they've disappeared and what you see down here is a new set of fibers in his cerebellum and this was described as axonal sprouting new connections between existing neurons after a long period of latency that may represent the rationale but we can't prove it of why he began to change but it shows a dynamic quality to a severely injured brain and what's fascinating to me is that never in the history of human common in the history of human biology has someone who's had this much injury survived this long to the point where a long period of latency might stimulate a developmental process for a regenerative wound and the axonal sprouting that you see here is the exact same sprouting that happens in the preemie brain, the child brain the adolescent brain as it sprouts and it prunes back so the last part of our brain that we connect as it were is a frontal cortex gives us the age and majority and maturity executive function and then it prunes back this would not happen just if you got hit on the head willy nilly but there's something about the latency and the change and yet this was on the front page of the New York Times and yet Terry Wallace is still not getting basic rehab there's a letter from Mary and Barry back to Mrs. Wallace saying I'm going to do everything I can to get him physical therapy another marker how this population has really been neglected and marginalized and put aside and makes them vulnerable to the organ retrieval issues that we've described to some extent so let me just kind of summarize to give you a kind of a framework of the categories here and we'll continue just to put the narrative into some kind of graphic brain injury bad enough to lose consciousness become brain dead whole brain dead or you can recover you then go into a coma and a coma is usually self limited and you can recover from a coma really quickly and you'll probably pass through these stages but you can do it very quickly and you can have complete recovery from a coma I could speak long enough and I could put you into an induced coma and you'd recover if the coma after the coma lasts for a week or two then there's recovery of the brainstem which is the isolated recovery of what leads to the vegetative state the arousal mechanism sleep wake cycle startle autonomic function etc the vegetative state is described as becoming persistent after a month and described as becoming permanent here three to twelve months after anoxic brain injury or twelve months after traumatic brain injury the problem is the abbreviation for pbs is the same for pbs so everybody's all over the place and there's a lot of confusion on that part now here's an important point between the three and twelve month distinction here are five vegetative brains I wrote about back in 2002 these are five patients who are vegetative and what you see here is metabolic activity blue being low, red being high and first of all it means that you can't make a diagnosis based on a picture right you need to know the context but you see here that in anoxic brain injury there's a more kind of global pervasive insult so these people declare themselves in three months as permanently vegetative whereas the traumatic folks take up to a year and then you look at this person and you say this person shouldn't be vegetative there's too much healthy cortex it kind of relates to what we were talking about here what happened here this person took out his thalamus through the herniation and the thalamus is the integrative functioning element of the brain that we communicate with the cortex from cortical phylamocortical tracts and the thalamus is to the brain what Hartfield airport is to delta airlines it's the hub if there's snow in Atlanta even if the planes are falling you can't make your connection and you can't get there from here and so that person who's in that first column has a lot of available cortex and we were talking about this a lot of available cortex but no integrative function so that is why we have the three to twelve month distinction now what typically happens people are in the hospital after traumatic brain injury three to four weeks they're still vegetative they haven't improved to the point of being sent to rehab and they're not making progress so they get sent to a nursing home and they are in fact in the vegetative state but then they have what I've described as a surreptitious recovery and they're in the minimally conscious state but they go unnoticed because those behaviors are kind of episodic intermittent and nobody knows what they are still and then the only time we realized that they were minimally conscious was when they emerge and start talking in retrospect they say well he must have been minimally conscious all along you look at the record and there's evidence that he probably was and that's the sort of typical story this is the criteria that were published in 2002 aspen trees there that I took with my own camera for your viewing pleasure and these are the criteria on the minimally conscious state now let's do a comparison between MCS and vegetative state and let's look at Terry Shiva versus Terry Wallace a tale of two teres oh no even I don't like that so she had anoxic brain injury she was permanently vegetative she was evaluated by some 22 different courts all of whom said she was vegetative she actually got deep brain stimulation in the early metronic trial how they got consent for that I don't really know she was wakeful unresponsive reflexive static state and disintegrated she did not have an integrated cortical function Terry on the other hand traumatic better prognosis minimally conscious Terry continues to improve and he's reintegrated but he had been vegetative and he graduated into the minimally conscious state and the perils of premature prognostication we talked before about this relationship to DNR is that 77% of anoxic comas result in death or PBS 50% of TBI comas as well but 50 will not die or be permanently vegetative and recent Acasone recently had a paper that 22% of people who have traumatic comas are above the minimally conscious state after their recovery so there's this role for what I've described and this is the stupor coma the fourth edition time-delimited prognostication and basically it's not making a global statement when you're out here in the Atlantic about where the hurricane is going to land but try to use milestones to understand where the patient is headed so if somebody is in a coma and they recover consciousness that's great but it's better to be in a coma and quickly become vegetative than to linger in a coma because it means it's a quick recovery of the brainstem so that would be a good prognostic sign and I would say to the family let's see how the comatose state goes and let's see how long it takes for them to get out of the comatose state but however if they're vegetative for a month that becomes a negative prognostic sign so the thing is you want to break the story up into little pieces instead of making kind of a global statement at the outset unless of course you're in the verge of herniation and they look more like they're brain dead and they're on the extremes of catastrophe so the idea here is error cone and time right here it could be all the way from here to here if you get closer your error is going to be negative a smaller so the point that I would say one of the key things is to exclude you know all MCS patients at a year from the bundle of people who have been called vegetative so we don't have a category error that's enduring but it gets even more complicated than that and it gets back to this notion of disintegration and integration and here are a couple of studies that were done that I think point this out Steven Lorries in Liège did a study of vegetative patients versus normal controls and demonstrated that if you inflict pain by compressing the nail bed the vegetative patient does not have an integrated pain network they light up the primary sensory area but they do not integrate the network okay that's in contrast to a study that was done at Cornell and I'm sorry that all the names have gotten cut off at the bottom Joy Hirsch Nico Schiff other colleagues they took this is a paper that happened right at the time that Terry Shivo was about to February 8th 2005 and what was done was they played family narratives you know remember when we were kids we went to the beach and mom and dad this and that there would be a motive you would read it to me and then we play it forwards and backwards so it was the same frequency spectrum and what happened was the minimally conscious patients when it was played forward lit up their language networks an integrated language network when it was played backwards they didn't graduate students were the normal controls a lot of people have criticized that but the graduate students lit up in both directions and were almost hyper acute in the reverse frame because they were trying to look for words and figure it out but I was quoted here in the Times that day and I said this study gave me goosebumps because it shows us the possibility of this profound isolation these people are there they've been there all along even though we've been treating them as if they're not but this distinguishes I think the disintegrated the lack of a network response in the vegetative say versus the network response in the MCS patients but it gets even more complicated upper left hand corner study Adrian Owen did which was in science in 2006 a patient who was clinically vegetative alright and they asked this patient to imagine herself walking through her house imagine herself pulling tennis and disaggregating two linguistically similar words language, motor and spatial networks were lit up just like a normal control and the question is what do you call these people and we decided we wrote a piece in the hasten report non-behavioral MCS because these people were responding but by classical criteria they were still vegetative at 11 months the same patient if you put a mirror to their side of their face would look at the mirror satisfying the behavioral criteria for MCS but you have a discordance between behaviors on the outside and what's going on in the inside which should give us all pause and then we have this paper which is Martin Monti's paper from the New England Journal of Medicine I think it was in 2011 where he took that same playing tennis and spatial navigation imagery and for one patient who until that point had been diagnosed as vegetative toggled those responses to yes and no so this became a neuro prosthetic through imaging that allowed somebody who heretofore had been classified as vegetative to communicate however if you read the paper very very carefully after your like fifth or sixth reading you realize that they went back and then they were able to find behavioral manifestations of this person being minimally conscious but the point is you know they probably wouldn't have looked so diligently had they not known that this person was to do it I should say that the best metric to identify these patients is not neuroimaging but what's called the coma recovery scale the CRS revised designed by Joe Giacino who also was the lead author in the MCS criteria and 30 of the 31 MCS patients were identified by bedside imaging as it were through a neuropsychological exam on multiple occasions that's another important point you got to do this on multiple occasions because you're going to get a false negative because the behaviors are episodic but for that one patient the imaging was you know was liberating you know it changed the game changer and it made us realize this person was indeed not vegetative and could communicate and then the question is what do you do you know like how do they communicate you know does he get a scanner in his bedroom how do you do that and then you think of the profound isolation the good news is that it's kind of like an expressive aphasia he can't hear you you know he's there you can talk to him but it makes you you know you have a lot of pause and it makes you have pause when you want to turn the vegetative state criteria into brain death so that you can do organ transplantation because you might have somebody who was actually conscious and alert and wake but no motor output now that's the science yet the reality is patients are discharged prematurely there's length of state pressures this notion of medical necessity which is a behavioral sort of manifestation of improvement if you don't improve don't manifest behavioral improvement we're not going to pay for your care to CMS regulation but the brain could be recovering the body's not recovering and so people get discharged prematurely and no one is immune to this even Bob Woodruff here's one woman of a patient one mother of a patient Dustin Manweller and I have the hip of coverage to say their names who is now communicating with us vis-a-vis a computer interface and was just at Cornell and Rockefeller was discharged prematurely from his hospital was central hyperthermia almost died had a fever of 106 and his mother brought him to the nearest nursing home to where he could visit her she could visit him and then she makes this kind of really like heart wrenching statement she says you know it was too early to send him out to a facility where there wasn't any monitoring and then she says just kind of heart wrenching way there was no way to know he was any kind of distressed and actually saw him because he's not going to yell out or anything like that totally dependent upon the good will and the vigilance of others and their vulnerability Bob Woodruff himself wasn't making progress they were going to send him out to a nursing home and Lee Woodruff said damn the doctors caution this is my husband somewhere inside that hurt and broken head he knew me he loved me too but was scared and confused if you're going to have brain injury you want Lee Woodruff to be your wife and then a few days later Bob Woodruff wakes up and says hey sweetie where have you been that's a question we have to ask for all of us and here's I think the most heart wrenching of stories someone we didn't get to say Don Herbert who was a fireman in Buffalo had an anoxic brain injury it seemed but in fact he was a fireman he got hit on the head by a beam but was being hyper oxygenated because fireman's mask was right in front of him so he was miscategorized initially he's talking and then he was injured on December 29th 1995 and he stops talking in the spring of 1996 and then in 2005 a physiatrist at the nursing home where he was at started giving him some psychostimulants and we really don't even know what it was and he starts talking right? we realize it's true we don't he starts talking and he had four kids he came from a Clanish Roman Catholic family up in Buffalo fireman and he had four boys and this little boy Nicky was his last little boy and Nicky was about four or five years old when his dad got hurt in this fire Linda Blake who's Don's wife gets a call from the nursing home again the nurses are just spectacular and say you've got to come here because Don is talking and she's in her car imagine getting a car call she's been calling around all the Mayo Medical Centers all these fancy places the last 10 years to get someone to care about her husband nobody wrote back so she's driving there but first she calls her son Nicholas who's now 13 her dad on the phone what do you mean call my dad my dad is he doesn't answer the phone he's in the nursing home he's a vegetative patient dad's talking call him up let's keep this link a thin threat this is what happens so Don Herbert is incredulous that now his teenage son his little Nicky is calling him he says this isn't Nicholas he's a baby he can't talk I can talk do you know how old I am he tells him I'm 13 and Don responds with a vernacular holy and it's interesting because during that whole day his personality is intact he has cortical blindness from the hypoxia that he did sustain from the visual cortex but he recognizes the voices of his fireman friends he remembers what's going on Linda asks her son how his father sounded and Nicky reminds her he says to his mom I don't know I can't remember ever hearing him speak before and it's like Joyce's Ulysses for 16 hours everything is going he remembers everything but he also knows who he is and he feels guilty he feels a father's grief and guilt and he feels like he's abandoned his family I've been gone such a long time we were hoping to get Don to enroll him in our studies but a few days after this happened when he was on 60 minutes and everything he fell he got pneumonia he eventually died but he's not alone there was Gary Dogarty the coma cop in the 80s in Nashville our own Terry Wallace Don Herbert and they're all suffering from this challenge that he was in the minimally conscious state during that period and these from LAMI have shown in the archives of physical medicine and rehabilitation that there's no correlation between how long you're in the MCS state and your likelihood of recovery the longer you're vegetative the less likely you are not to be vegetative because it's a very simple system but there's a multiplicity of connections in the minimally conscious brain and yet we can't predict and that's what we're trying to figure out at Rockefeller and at Cornell and this is the medical necessity argument that is predicated on the sense that we know how long you should be in the minimally conscious state it's an efficiency argument but we don't know what the denominator is we don't know what the time course is because we don't understand the biology and I wrote this piece in the archives of neurology last year and the punchline is brains were covered by biological standards not reimbursement criteria but that's how we pay for it let me just kind of quickly summarize one more important part of this this is not all observational but we're beginning to get some kind of therapeutic engagement again with all the dispensations for the therapeutic misconception here I won't go into all that but the idea is that we might be able to change the injured brain and we were looking at all these people at these long latencies they recover might we do something to improve their likelihood of recovery might there be untapped residual and integrative capacities could they be identified by imaging could they be accelerated and there has been a this is a paper that we wrote with Kathy Foley and Nico and I about an IOM meeting that we tried to get funded which didn't get funded but it was an initial meeting pharmacologic interventions the use of amandine has shown to accelerate recovery in disorders of conscious randomized clinical trial involving some 1100 people in New England Journal of Medicine in our own work with a patient in the minimally conscious state who got deep brain stimulation and stimulation of the intralaminar nucleus of the foundness again pointing to the centrality of the foundness as this kind of integrative function simply put this is a man who had been assaulted in New Jersey and was in the minimally conscious state his initial comas Glasgow comas scale was 3 which is as low as it can go without you being dead he transitioned to MCS about three months into it and he was re-admitted into our study four years after a very steady baseline and this study is a lecturing of itself and research methodology and the like but let me just summarize that it was a six-month double-blind crossover study these are the stimulators here they look like they're enormous like you're driving a truck into his brain this is a CAT scan and there's a lot of reflection off the electrodes so it's distortion he had increased cognitively mediated behaviors a man who could only communicate you know with his eyes finger he couldn't say any words after stimulation say six words at a time he could answer questions he could tell his mother he loved her he could go shopping with her and choose clothing and he could say the first 16 words of the Pledge of Allegiance he had improved limb control and he could also masticate and eat for the first time without a peg tube and in fact when the stimulator was sometimes turned off and he was being fed he would aspirate he needed that to maintain his level of arousal and it was first evidence that DBS could promote late recovery from severe TBI and this is in nature in 2007 for me as an ethicist whatever that means the most amazing moment was after we were done with the trial and we were doing stimulation parameters they had these two electrodes these two boxes in their chest like a Parkinson's patient and there were four electrons and you could change the frequency the size of the charge and it's very laborious and every time you change one thing you got to start from the beginning and do it again and it was a hot summer day and somebody said to the patient hey so and so do you want to continue and he said no and he stopped and originally we wrote the consent document for the project it was surrogate consent and all that and I said we have to put a codicell in that if the patient were to regain the ability to direct his or her own care we would then consent the patient this did not raise the level of consent or refusal but it raised the level of ascent and descent and for me it was the restoration of some degree of moral agency and agency ex machina which gave him the ability to be involved and to control his care and ultimately this is what it's all about for us it's all about and I'm going to stop here I've got another bunch of slides but what it's really all about is to give patients a voice and to bring them back online so that they can be part of a human community the Olmstead Decision and the Americans with Disabilities Act back in 99 and whatever it was and it maximally integrates people and maximally integrates patients with disabilities into society these patients have a two tier problem their problem is that people who do disabilities work they talk about not the disabled but people with disabilities they're still the disabled and part of this book's intent is to affirm their personhood so that they're covered by laws in the ADA because they've been treated in a scandalous manner but in fact if we recognize their personhood then we have to recognize that those protections they are entitled to and that I think is central to bringing them into community integrating them giving them communication which is clearly closely linked to community this was known by Pedro Almondo the brilliant Spanish Academy award winning filmmaker who in his film Abla Conea was mistranslated into Spanish from Spanish into English it's Abla Conea talk with her and the English is talk to her big difference the idea here is we talk with another we talk to a plant we talk to something that's vegetative and I think he was affirming the notion of personhood here let me close since this is all about organ donation but I hope this is let me just go to that slide because call for for temperance just to be thoughtful and respectful for these people not seeing them as instrumental means to someone else's ends but respecting their personhood I think we should prohibit hovering the families that I talked we talked about the organ donation people hovering around these beds of people who are a severe brain injury we should prohibit premature harvesting we should try to understand the types of coma that more likely lead to dire outcomes and people who should be acceptable for donation we should do better jobs of prognostication for families and have that inform the informed consent process we should also think about having a time out for for donation amidst the shock and grief that a brain injury engenders so that we're not capturing a vulnerable surrogate and it'd be great if we could delay it till after we got out of the coma toast phase to see how people naturally declare themselves unless they're catastrophically injured and we know it's going to be going in the other direction I think some of this would seem to delay or undermine the donative efforts but I think a little more transparency here would be good for a donative intent and it would be good for the beneficiaries of these organs to know that these gifts were received in an open and transparent way and for those of us who aren't working in the organ donation field there's a lot of contentious feelings between the OPOs and the docs and I think by making this little more transparent would be good. Also, I think we'd be more comfortable in heparanizing patients if we were to heparanize patients if we knew their prognosis was as grim as it really was and we weren't inadvertently heparanizing somebody who might actually recover again as I mentioned earlier 22% of people who have traumatic coma will recover above the level of MCS according to Risa Nakasone Richardson's work so that's a big number to make a mistake with and I think that again, Mark is here and I just want to again congratulate him not in absentia but in present form for this 37th iteration of this conference and for having a contrarian view in the mix it's sort of typical of your of your balanced view and why everybody has such great respect and admiration for what you've done here and in the field so I'll stop here and I thank you all for your attention, I'll be glad to take your questions Yes, thanks I'm Michael Miller, I'm Director of Transplant here sorry we didn't get a chance to meet before so let me just kind of summarize what I think you said roughly about 22% of the patients that we currently use as DCDs could recover No, okay No, I'm saying after cardiac death is they're dying for a reason and I'm just saying that looking at this population as a category a severe brain injury being pressured to withdraw care these people may have a prognostic possibilities but not all DCD patients fall into this category there are people who have other problems why they're being DCDs So what percentage of DCDs do you think could recover I don't know, I think it's an empirical question probably a question that no one's ever wanted to ask but I think Dan, do you know? Well, I guess I want to question this because to be a DCD you really have to be ventilated then a lot of the MCS have full brain cell function with a breathing on their own so I would actually think the percent of people were in MCS No, so we're not getting the MCS so before they get to the MCS they're in a coma state and they're ventilated and if we take them off the ventilator they're going to die we all know that but the question that I have that maybe we don't know the answer is that if we were so you've got a pathway severe brain injury not brain death coma, ventilated one pathway is proceed down a DCD pathway the other pathway is to say no, we're going to wait for a period of time whatever that period of time might be and how many of those I think we do know we do know some broad issues, we do know that traumatic do better than anoxics we also know that people who have therapeutic hypothermia are better than the hypoxics and so that's even more unclear because it's a newer intervention so my argument here is a simple one that families when I talk to surrogates they feel pressured, they feel put upon, they feel badgered and staff sometimes feel obliged to protect them from the earnest efforts of OPO's the other issue I think is there's a conflict of interest and how OPO's get paid and what their incentive is to do and I think that's another part of the story but I think part of it is I'm so glad I've gratified you're here is that for people like you who do what you do and thank god there are people like you who do what you do hear a story like this so that you can just add another facet to your reflective stance so that you appreciate the complexity of doing this and maybe the fact that it's not the best time if you could wait a little bit let the family adjust to the reality but I wrote a piece of the Haystain Report back in 2005 and I was a chair at Ethics Committee and it used to be a neurologist who said there's no hope for meaningful recovery we take that as the gospel as if it were true and now I kind of want to know how do you know that because we've seen people recover and it may not be a recovery that you or I would want but the issue is it should be part of the informed consent process so that people have the information to make that choice or surrogates have that information to make that choice themselves thanks Joe I certainly agree with you that we don't want to treat these patients as if they are brain dead that we want to have a setting in which they're not getting a lot of pressure or care if that's what the family wants or there's some reason to believe that's what the patient would have wanted or at least what's consistent with their values but I guess part of what has always struck me as odd is how distinguishing the minimally conscious state actually makes us think differently even in the early stage about good decisions to be made it seems to me maybe there are others in the room that I'd almost want to be in a permanent vegetative state than to be minimally conscious for 30 years able to partially appreciate the fact that they are partially appreciate pain partially appreciate the fact that I can't communicate with people on the hope that maybe they're going to be brain brain stem cells put into me and I'll recover 50 years from now there are two problems with that care guards said life is lived forward and it's understood backwards and what you're saying right now if you knew with certainty that you didn't want to be this way you would have to not see a neurologist or a neurosurgeon in the ER because we've dichotomized outcomes they're either miraculous or like on TV or they're catastrophic maybe as people are on a biological continuum so you have to no one ever wished for this and one of the things I was trying to write the book when I was writing the book which maybe you can't do in a talk it's like you don't want to be like proselytizing for the MCS state that's not what I'm I really wanted to be very careful in saying this is not a state that we any of us want but it may be a state that comes to us because of a form for recovery if you're not willing to accept this then you have to make different choices at the outset it's also true for funding because I think this is that choice may be it may be a DCD donor or a permanent state of state but that should be a frank open choice the other thing is the risk of projection so the patient can I tell you what I think is well I've ruined it for you I've ruined it for you so go ahead 800 people are not going to buy the book now so the patient I wondered by putting deep brain stimulation are we creating a state worse than death and I wrote about this back in 2000 and you can turn the stimulator off that's one thing and it's probably mostly reversible although there is some plasticity issues that we're learning about which are healthy so the person who got the deep brain stimulator I won't mention his name here but I had in the book a section where somebody made the argument that this is a fate worse than death and what Dan just did and I had okay but I'm just doing a summary like a kind of a shorthand and the mother of this patient tells me a story she said you know one day so and so was crying and she said to her son she said why are you crying and everybody I was waiting for he's now aware of how bad it is and it's a fate worse than death and he wished he had been a DCD donor and she says to me he says he was crying for Cory and I said who's Cory? and I've been talking to the mother now for hours and hours she said Cory's his brother who doesn't visit him and then it's got then there's like two levels that is he crying because he misses Cory or is he crying because Cory is so upset he can't see his brother this way so the notion is that there's more there there than we might think and and he was happy Gary Wallace again when he recovered turned you know I wrote this in a piece in Cambridge Quarterly a few years ago was at a family gathering turned to his mother spontaneously said mama life is good you know so I mean it's easy for us to think we don't want to be this way and none of us would want it no one of us would choose this but these are people who are already there and if we had no more emergency rooms and we had no more trauma the question still remains what do we do with these people and that's part of that's been my focus and I think the organ donation is kind of you know it's a sidebar to a bigger story but they wanted me to talk about organ transplantation and it really bothers the families yes sir if detail the study shows that if someone is following head injury, cardiac arrest and a stroke the pupils are dilated and fixed for three days that person dies with a chance of 100% now this is one side of the story the other side we know that if the person has severe head injury and everyone who has severe head injury or severe condition that I mentioned cardiac arrest you put them on respirator you're going to get occasionally condition that you so nicely reported now to try to find now what you are driving at or what your recommendation is at what stage clinically you are comfortable no one is comfortable but you are comfortable to stop the respirator and you say I have done enough to know and now I feel comfortable to stop this respirator great question this was a talk about diagnostic categories and I'm going to put it on its head now and say they only matter so much and we had a case where it turned out a woman had a hypoglycemic coma which is intermediate prognostically between trauma and hypoxia and the sisters in this case of the patient were really what's her diagnosis should be vegetative or minimally conscious how do you know what we did then we said look tell me about your sister and what was her story she had a substance abuse problem she had gotten her life together she was going to school she wanted to work in a bookstore or a library she loved books and then we said to the sister do you think she'll ever be able to do that I'm not sure what her brain state is going to be unconscious how much emergence but she's never going to be able to the goal of her life that she would have led was not attainable anymore and at that point the decision was made to withdraw care so the goals the goals of care is really what I think ultimately determines this but we have to be we can't gloss over the possibilities that there could be goals in some of these brain states that before we had to lump together it's all really bad you know and we have to disaggregate that I think when I feel that we have adequately and fully informed the surrogate decision maker of the information that they would need to make a good choice and again I'm more agnostic on the choice than I am on the importance of a good process and I think if you truly believe informed consent you've got to inform the surrogates and realize them in the short term before we have better tools and drugs and prosthetics we're going to give them more of a complex situation to make a choice in than for us to say it's just terrible let's just withdraw care because it's a kind of paternalism when this whole thing came out about you know the imaging studies you know the imaging studies you know Steve Miles on the MCW bioethics line you know trying to maintain the liberal right to die agenda which Dan and I were partisans together on Lou Dobbs for several nights you know letting Terry Shybo die you know they thought we would disagree but they were surprised when they didn't it was pretty funny so it's really about it's really about giving families the information they need to make an informed choice and refuse care so a scenario two scenarios actually I'll go with the first one so as a transplant surgeon I get called by the OPO about a potential DCD donor and I've learned everything that you said here plus other stuff and my sense is that this patient might have a reasonable chance of going into a minimally minimal state minimally conscious state what do I do well I always thought that the DCD criteria were really about whether or not they would die within an hour of their extubation right so there's nothing to do with MCS so physiologically so they are still in the coma state right but I've learned enough from you and others that there's good prognostic indications that he could get to the MCS so what I would do and your ethics committee colleagues could go along with you and have a conversation with the family I'm just the recipient potential recipient candidate's surgeon that they're calling me about a potential donor that they're going to go well let's say I'm just for the first scenario I'm going to go out and do the harvest I think that you have to be convinced by the moral agent in this sequence of transactions that the surrogates provided an adequate informed consent for DCD and I think it's reasonable if this was a state the patient wouldn't have wanted to be in and had an advance directive what state is that? we don't know the state yet well you're saying the hypothetical was that the minimally conscious or irrelevant thing that you're saying I think to the real case because I don't mean that disrespectfully I mean that what's happening is you want to trust as a transplant surgeon that the person that's prognosticating as the guiding physician is experienced and knows what they're talking about they're using the neuroanatomy and not just shooting from the hip and they're not making false claims now how do you have confidence with that? you can't because you're the transplant surgeon you really have nothing to do with the process and what we heard today and very nicely is the science of prognostication is still evolving but the art of prognostication still allows you to make wise choices the art of prognostication is saying that even if that's part of the conversation I can't think of a time where I have told someone that they're always going to be unconscious and never improve if proofment is the rule for all survivors of brain injury and the question is what does that spectrum look like at the front end before it starts to narrow down and if the best of all possibilities when handled appropriately with someone with experience is well beyond the worst nightmare of that patient such that they wouldn't want to survive those are the patients you're going to withdraw treatment on does it always happen correctly? no, that's the sad part does it happen by people who misguide people with wrong information? and I think time is really important here because it gets less complex as it evolves that may preclude viability of organs and things like that but I think the prognostic sensibility, the judgment needs to take precedence over the instrumentality of the organs but I think it's a lot harder to know at the beginning than a little further along and there's certain milestones as I mentioned that might give the neurologists and neurosurgeons additional information to give you better information now I do think and maybe I agree with everything you said but I might say that you were uncomfortable with the harvesting so you were the agent for the other patient and you didn't think it was koshered as it were I think you have the right to be a conscientious object or ask additional say I need to talk to the family or I just need to get more information before I'm comfortable about it even though it's not your primary task it can send it's important for you to feel comfortable so Jeff tries to repaint that very sharp line of the donor care team and the transplant team and I appreciate that on the other hand we as transplant surgeons always have to confirm some things that some neurologist or some care team has done in the case of brain dead we make sure that there are two brain dead notes and so just as we do that yes we do just as we do that I'm not sure where we get two brain death notes but I'm with you so we have it's part of our responsibility to ensure that that person is brain dead agreed and so similarly I would say that we have to be assured that the DCD scenario fulfills some criteria what that criteria is maybe it is the criteria that some team has decided that there and the family has decided that they don't want the patient in that state to have to confirm if that's the case then it makes our job much easier what I miscommunicated was the irrelevant part of my statement was that usually prognostication and withdrawal treatment isn't based on saying someone's never going to wake up and be minimally conscious that's not the conversation that should happen I'm sure it does in some places it's that even with awakening the extent of disability well beyond what the patient wanted if that's done correctly and that's what I meant is that the minimally conscious state even if you know someone has capacity to get there that should be part of the conversation with someone who's prognosticating appropriately should police for that on your end that's a very awkward thing because I bet you more than half the time at least it's not being done with lucid information and by the time they arrive it could already have happened and the family's gone well I mean I guess we have to figure out where the transplant surgeon's responsibility is for that proper information maybe it's zero we have to make sure that the information is properly presented to the family to get to that correct decision I don't know where it is this might be a case in these cases where the custody and the quality of the consent is important to be maintained it might be in certain cases when the ethics committee comes in and serves as a bridge between the clinical team, the caring team the harvesting team so the trust is there and you're able to demonstrate that what should have happened occurred but again I don't want to say that the one point I would do want to make is that one of the things that's implicit in a DCD story is a downward going trajectory and it's a degenerative process people often analogize these people to Alzheimer's patients because they could be at the same functional status but in fact these patients have an upward prognosis as you rightly say they're getting better they may not be getting good enough but they're getting better and DCD people are generally sicker and progressing and they would have died the decision was already made to withdraw care there's a first decision to withdraw care and then a secondary decision to donate so what I think is important and I think sometimes that gets conflated with our population where the issue is they should be a donor and therefore we should withdraw care versus let's withdraw care because the burden benefit ratio for the patient is not good based on his prior wishes or whatever the chronology is off and that can lead to distortions and coercion so then the potential second scenario would be I'm a transplant surgeon I have reason to believe that the quality of the consent was not good but I'm provided an organ should I care yes why my responsibility is to my recipient I have an organ in the bucket I think your responsibility is to the system it's like when you're defending a criminal you know they're guilty but they deserve their day because you're maintaining the justice system and I think ultimately it's about the public trust if you're maintaining the integrity of the chain of the custody of the organ and its consent and all that you're making it more likely the next person is going to step up and sign an organ donor card so I think your responsibility is to transcend the individual we're all public health officials I agree with you on the other hand my candidate dies it could have had that organ now I'm liable because I didn't transplant the patient well it's kind of we have different kinds perhaps that's why perhaps we need to perhaps why we need to get the ethics to any involved because they can fulfill some of those responsibilities for you and you do have a primary fiduciary responsibility to your patient back home but that doesn't negate your other responsibilities but if they're incompatible with each other then your primary responsibility is a doctor or an individual patient trumps but we have to make sure those other aspects of care are not lost in the transplant I'm pretty sure the family of the donor that I didn't take is not going to assume me whereas the family of the patient who died is probably going to assume me but I did want to say that I think it's important for the donors to feel that there's integrity in the process and I prefaced my comments that I agree with you but I'm just telling you that there's certainly a group of transplant surgeons who don't agree with me don't agree with you on that basis and would go transplanting that organ regardless so Laney keeps telling me that we're out of time so thank you very much thank you


conference, global conference. Thank you so much for coming here. So I'm here to welcome our educational manager, Margrethe Thyspen. Please come at the stage and she will tell you about the OEC conference. Thank you. Thank you so much. Right. Hello, everyone. It's a huge room for small me and not too many people. If you care to kind of go together here in the middle, it's fine. Anything. Or you can just do as you want to. Okay, so I'm Margrethe Thyspen from Norwegian digital learning arena. And I am here to talk a bit about our projects with SARME resources.  I do not belong to the SARME population of Norway. So I'm talking about SARME resources and SARME conditions without being SARME. And that makes me join a very long Norwegian tradition that I'm not very proud of. So I'm very conscious of it. And I just have to say that I hope during the presentation that I will be able to show you that this is about inclusion about empowerment and about capacity building. So it's not about me knowing what's best for the SARME population. So that's really important for me to say something about. And especially with the start we had this morning. So, okay. Just a few words about where we are in the world. You see the map of the world up in the corner there. And then there's Norway in green. And then the larger map, you can see the SARME, which is the name of the SARME country, which is the area that traditionally has been home to the SARME population of the Nordic countries. So there are four countries with the SARME traditionally with the SARME population. So that's Norway, Sweden, Finland and Russia. Of course these days SARME people live everywhere else as well. And there's, for instance, of course a huge population in Oslo, the capital of Norway holds a lot of SARME people. I'm just going to start with a few facts, not too much, but just a few facts about the history and the conditions for the SARME population in Norway. So we've got SARME parliaments in all the three Nordic countries. So there are some degree of self-government for the SARME population. Of course, especially when it comes to SARME matters, SARME culture, SARME traditional herding and other SARME issues. So we opened our SARME parliament in 1989 in Norway and then Sweden and Finland followed after that. This is the SARME flag, very beautiful flag for the whole of Sapmi. And as you can see on the slide here, there are a lot of languages in this small area. 10 or 11 depends on how you count. But in Norway, there are five languages and two of them are almost gone. So there are very few speakers of those languages. But there are three official languages, which is not the SARME, which is by far the largest one. And then it's Southern SARME and Lule SARME. And all three languages are in a crisis on the verge of extinction, but especially Southern SARME and Lule SARME, very small languages. But of course, there is a huge interest these days in revitalizing these languages and reclaiming them. SARME children and youth have the right to an education in SARME, also delivered in SARME. But laws and rights are not the same as practice all the time. So in areas where there are very few SARME pupils, it's hard to get the SARME education to fit into the schedule. And it's also a very large problem that there are a shortage of teachers in SARME and SARME speaking teachers. So very often it's something that they do after school hours or before school hours. Then they do their SARME lessons. So of course, that's not optimal at all. Okay. This year, in June, the Norwegian report on truth and reconciliation were presented to the Norwegian parliament, the 1st of June. And it's a huge report. And of course, it's a sad story about language loss, about traumas and shame of being SARME. So there was a very conscious policy of Norwegianization for years, especially in the 19th and 20th century, where children were forced to go to school and forced to learn Norwegian and denied practicing their own language at school and denied using it, also through breaks and so on. And a lot of these schools were boarding schools and they were not allowed to use the SARME language during, I think, yeah, that was my mic. Okay. So there is a lot of sad stories in this report and I don't want you to go too far into this because it's not but I'll just state them as facts that there are a very sad history here and a lot of wrongs to try to make right again. The language loss and the trauma and the shame continued long after Norwegian government had abandoned the rules or the laws of Norwegianization. It's a sad fact that when you change the laws, the practice still is ongoing out in the different counties and societies in Norway. So as far as into the 70s, 1970s, 80s, this was still still a practice, I'm afraid, even though the laws were abandoned decades before.  This led to a lot of parents deciding not to teach their children SARME because they thought that SARME children would have an easier life if they only knew Norwegian. So a lot of language was lost that way and these days there is a lot of trauma in not knowing your own language and a lot of interest of course in revitalizing and reclaiming your own language. There is a huge difference between some very small core areas in Finmark up north in Norway. They have kind of done better for themselves. They have been left alone more so there is a more vibrant and strong culture that has existed all through the period while in areas closer to Norwegian societies it has been very hard and the story is quite different there with very few people left speaking the language and feeling SARME and identifying as SARME. But it is changing these days in a more positive direction. Okay to the educational resources and this is the SARME parliament in Karashok very beautiful building. So the SARME parliament has got the responsibility of providing learning resources for SARME children and money there is a lot of money in the system there is money is not a problem but a problem is there are so few teachers SARME teachers and so few people being able to do to provide the material to make the material and provide it. There is a very small publishing industry SARME publishing industry and the SARME parliament wants to to take care of the publishing industry which is very understandable. So they want to give the work with providing resources to this small industry but there are too few people so there is things are kind of queuing projects are not being completed because of the lack of resources when it comes to people. So that is the problem when it comes to the counties of Norway I can go over to this picture then this is Norway with the different countries. They are responsible for providing the education for upper secondary and this is where my organization comes into the picture. So they have also got an responsibility for these for pupils 16 to 18. So in the northern most counties of Norway of course there will be SARME pupils 16 to 18 and then there is a responsibility in the counties for providing free learning material for them as well as Norwegian pupils in the same schools. So the counties and the SARME parliament then have some kind of joint responsibility here and that is why NDLA Norwegian Digital Learning Arena also can come into this equation and do some work on SARME resources if the counties want us to. I'm just going to say a few words speak a few words about the NDLA and the NDLA model just to show you why this is a good idea in my opinion how we can work with SARME resources. So we are a large OER repository we are owned and financed by the counties of Norway all counties are joined in making this effort except one county everyone else is joining in and so they provide money for us to make learning resources free open digital learning resources for upper secondary pupils in Norway and the way it works is that NDLA gets to borrow teachers from different schools all over Norway that come into NDLA and make the resources and then go back to their schools or they have a part-time job with us for a while and still stay at their school and make resources. So that means that if you are a SARME teacher working at the school in Finmark an upper secondary school that is owned by Finmark County you can come into NDLA and make resources SARME resources for us if that is the wish of the counties that we should make SARME resources. So it's a system where you both get learning resources and you also get teachers staying in their schools making the resources not leaving their work not leaving their school and that is of course an advantage in a situation where there are a few teachers few SARME teachers and it's also a way of getting new competency into schools how about how to make good learning resources we come into our environment and learn how to make good resources there you go back to your school with the skills and can share them with your colleagues so you kind of you can spend the same money twice both on the resources and on the competency that the teachers get. So the key word here is collaboration so it's a collaboration between the counties and between NDLA and the different schools on how to make learning resources so this is the main system that we work with but it also means that there's a joint board from the counties deciding what subjects and what resources we should make which I'll get back to a bit later. Okay so I've told you about the shared responsibility for the resources told you a bit about Norwegian digital learning arena and how it works and now I'm going to just tell you a bit about the small projects that we have been involved in concerning SARME resources the last few years. In these projects we function first and foremost as kind of a publisher an online publisher for the resources so the teachers on different schools that are involved in these projects they are more loosely connected to NDLA than what the ordinary teachers working for us are and I'll tell you how that works as well so they make the resources we publish so it's kind of collaboration there so the initiatives that we are working on has been made from the counties with the SARME population not from the joint board of NDLA so it's a bit on the side on what we do the main thing on what we do and we don't know if that will change hopefully it will change so it can be something that we do in our main workflow as a consequence of the truth and reconciliation report we could hope that that would help and make everyone see that this would be a joint responsibility for all of Norway not just the northernmost countries. Okay so I'm just going to talk a bit about these projects. So Southern SARME as a foreign language that is the oldest project that we have Southern SARME I told you it's on the verge of extinction so it's very few people speaking this language and very few people able to make resources however there is a center a language and cultural center called Aagege in Trøndelag in mid Norway and NDLA has been asked to collaborate with Aagege to make resources and publish them so money has been given from the SARME parliament to Aagege and they have a teacher's at an upper secondary school nearby who has come in and made the resources in Southern SARME so the reason why this is a foreign language project is of course because this is language is not they haven't been born with the language oops sorry they haven't been born with the language they they need to relearn their own language so it's a foreign language to them when they start school that is why it's a foreign language course and this has been a success and the authorities wants us to continue so actually we are going a bit out of our own area when it comes to ages and making more resources for younger children in Southern SARME as a foreign language as well so this is a bit special but it's because they have seen that the workflow the way this function will work now our resources I had just have to to say that one more time they are open online for everyone to access so of course that is also a big asset when it comes to subjects like this because grown-ups adults anyone who wants with an internet connection can access and learn Southern SARME from the resources if they want to any teacher teaching adults can use them any way they like then we've got a science subject project which is quite new it's been going on for two years I think and this is a collaboration between us and another most county in Norway and they have been giving means to a school in Tromsø and the teachers there have made resources in science SARME science and SARME science is a subject that you can take if you if you are a SARME it's the basic subjects in Norwegian schooling have their own SARME curriculum when it comes to science it's quite the same it's a few competency aims that are different from the Norwegians curriculum but most of it is the same this we are in the process of publishing this we have published almost half the the subject a lot of resources has been published but we see we have learned a lot from this project and we see a lot of challenges so one challenge is that we are a very professional provider of learning resources with a very professional system and our own editing platform so when teachers are supposed to publish for us and they're not quite in the system they have to spend time learning how to do all these things all these managing our systems learning to use the systems and it takes a lot of time for them that they they thought they could just come and and write resources make resources and everything would kind of magically fall into place but they have to learn the systems and they spend a lot of time on this so it's a much slower and more demanding work than they thought it would be so if they were closely connected to us they were kind of coming into our system as most teachers are it would be easier for them but then again there's time and there's money for the schools to manage this so this year we are not finished but this year the school could not put in more resources so now we are left with trying to to to complete this finding the means somewhere else and it's also been mostly a translation project and of course that's not quite good enough we need to provide some context but then you need to get photos and you need to get films and it's a very costly process so I think we will manage we'll take some time before we have a complete subject in science for some of the children but I think it holds even though it's not good enough with the translation I think I think it holds value anyway to be able to come to school and read a subject in your own language I think it holds value anyway but it's not it could hold more value just put it that way right the last project is starting up these days and it's northern Sami as a foreign language so it's very similar to southern Sami as a foreign language and it's also a collaboration with the tromps and fin mark kanche and there's teachers at another school called noor troms that will make these resources but again we see that there is not there is some money they've been giving money from the county but it's not enough to to make a complete subject we can see it already that there is too little money so we will in for now function more as advisors in how to make the resources and then we hopefully we will be able to get money and publish these resources in the future um the ideal thing would be with the Sami parliament giving the money to the county to make these resources but then they need to collaborate and I think that is quite new to them that they should collaborate the counties and the Sami parliament to make resources that isn't quite useful to them so so it's it's hard to navigate kind and talk to the right people and see if we can can get something going there but we're not giving up okay now I've got a slide on all the all the benefits of making OER and the NDLA model for the Sami resources and I'm not going to read the whole slide and you know a lot about OER here and I've already mentioned some of these but it's of course that the open resources and the CC licensing makes it easy to adapt to any situation that the teachers are in and I also talked about how this system allows the teachers to stay in their work as teachers which I think is hugely important when there is a teacher shortage as I told you about um also I told you about the competency that this gives this work gives the teachers so they can bring back to other colleagues and how to make good open resources and also of course the costs of open online publishing where you don't need to provide for so and so many pupils it will the cost stays the same compared to ordinary publishing because this is a problem for the for the publishing houses of Norway of course these these subjects are not they can't make money on these subjects so they need subsidies to make such subjects so but that is not a problem for us it's the same if there are a few people pupils or many pupils the same costs so the key here is capacity capacity building I think but this model allows capacity building in the communities in the areas making resources um learning how to make good resources staying at the schools and providing local contexts so the SARMI teachers will make the resources and we will just be kind of a publisher and a provider and a collaborator to make them good um okay but as I told you there are some challenges it's time assuming to get into our systems and and learn how to to navigate and there is also as I said a shortage of teachers um and there is a problem of funding and I said money is not an issue but there is money in the system but it's not in the right place the money is not kind of getting into to this kind of of uh making of OERs for now so would it be better to just to get just make an arena where SARMI teachers could upload their own material and and share it there we are going to make such an arena for teachers in no way to share and not kind of relying on our more costly model with the quality all the quality processes that we demand and that would make it hard for the teachers to kind of get into the system I'm not sure uh I think why shouldn't SARMI resources be of the same quality as the Norwegian resources are on our website um yeah um if my wish is that all counties goes into this and and allows money for it so that we can use our utilize our model to the fullest and we can have the teachers more closely into our organization while still staying at schools and and it will be easier for them to make the resources um so we could hope that that will happen and the SARMI parliament are not convinced we have meetings with them they are not convinced that we are the solution at all and they want to support the small SARMI publishing industry as I as I said and they have also got issues with our being digital all digital which they they're not sure if that's a good thing um yeah so that is also an issue so to finish off um what I've been trying to tell you about is that there is I think this model that we have where the teachers can stay at the school and make the resources and we can kind of provide our workflow our quality workflow and and and get it out there and it's open to everyone and it's CC license I think it's a good model for SARMI resources and there's a huge need of them um but there are some issues with I would say that the money is not in our kind of lane it's on in the SARMI parliament and it's also a question of all counties going all in and not just leaving it to the northern countries to take responsibility for for it I think so for now we have to kind of work with our our issues and and take the time it takes with little money and loose connections to these schools and these teachers um but we get something done and I think it's it's okay I think it's it's good that we can have these projects and and work with them but we I would like to do more I would like I would like us to do more um but we have our we have our challenges yeah that was it really so I would like like to get some feedback or some response or some advice or whatever you could talk to me during breaks if you like if you have if you have anything you would ask me or anything any advice for us it would be really really welcomed so I can't see this this is just the spotlights blind me miss I can't see you at all I feel like yeah yeah not like a teacher some kind of a pair in the spotlight is not where I usually are but can is there anybody who wants to say something or ask me something comment Connie there's nine calls to action for the truth and reconciliation here in Canada related to education there's 96 all together so there's many many parts but in that in those nine related to education they're quite specific about certain things to have happened and even this recent visit to Canada by the pope that was one of the calls to action was that you know the pope would come and apologize and and make a better relationship with indigenous peoples and I mean it's a very complicated thing but he did come and there was you know an apology so it's part of that working together in our present living with the past so do you have any calls to action and if so would those be a way for those other counties to perhaps recognize that they have responsibility to live up to those calls to action what is the case right now is that the report has been handed to the parliament and they are working with it now so and there's a lot of suggestions towards the end of the report or what could be done and what should be done so we just have to wait for to the parliament to decide if they're what will come into those type of actions so I hope hopefully we will have them because the report just mentions education of course and resources as well what we'll see a very sad thing that happened this year was also that the same day as the report was was handed over the part Norwegian parliament ratified a new educational law and the Sami population wanted the right to be learning material to be in that law but they wouldn't take it in and that was ratified the same day as the report was was handed into the parliament so very sad and of course it's it's something about or this will be very costly if we are going to do this if this is a law then we it's probably some kind of consideration that but it was it was a it's quite a paradox that day really so so I don't know hopefully it will change okay come and talk to me if you have something yeah some advice for me please thank you