Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine

Transcription

Welcome to the Veritas Forum engaging university students and faculty in discussions about life's hardest questions and the relevance of Jesus Christ to all of life I really appreciate your having me here um, and, the thing that dipping them most looking forward to on tonight is actually the conversation more than more than anything else but accessory several conversations since i've been in here and halverson really fascinating questions and look forward to that problem allotted for eight hundred talk about tonight comes out of my own experience as a pediatric oncologist and i spent most of my career working on um... it can yanking out here a camera i guess that a lot uh... modulated everywhere moses electorate in armenian their re-used for neuroblastoma which is a childhood cancer and combining the immune their p's um... in the form of anybody's with cellular therapies because i was a very meritorious but it was a strand at saint jude children's church house that are for years in that context we had quite a few patients forty percent sometimes fifty percent depending on the category of patient has a role model of the things that i realize this how little i understood about suffering and about dime despite the fact that i had an enormous number of patients to her facing that so lot of what i'm gonna try to get out tonight has nothing to do with me being any particular expert there may be something wrong with them microphone because i'm not stood still just a little bit project i did um... but a lot of what i'm gonna try to talk about tonight by doesn't come out of any particular expertise becomes out of on experience and so aren't quite open to learning from your your own thoughts and opinions as we go a long hard so we'll see where it was sort of got her first thing on the i've noticed is that we had some real challenges in this country around madison and i'm going to going to talk about dr suffering and medicine we ought to take straight on and some of the problems that we have medicine in this country medium observations that are completely not based on the expertise whatsoever when the first things that we hear allot about and uh... political arena now headed to the very heart of any of the debates because of how important personal responsibility is to the upcoming presidential debate is remembered expenditures per capita that we pretend to medicare if you take this and projected house further past where we're at right now there's no prediction end of this curve really bending if you compare medicare with medicaid which targets the poor and children and with social security which is our other stating that that we've chosen as a society to put into place you see that be done says as the jury refuse we s stays relatively so that looks pretty doable and medicaid with a few tweaks seems to have a slow growth occur that is also relatively sustainable but if you look at the red at medicare you see that it's like this and it just keeps growing one question is why this is and the question is how did we get into a place we are spending so much money we had no idea how-to modulate invests and one of the questions the becomes very uncomfortable for many of us who women's medicine devoted to helping the suffering and helping vehicle and helping those who are facing dying when the uncomfortable questions when someone looks at us insists it was their ever beloved how much money important into medicine if i had to be a difficult questions when they're hoping in conversation we start to get out because their questions not only of justice that arrives in this but also questions around the dignity of life and what it is that we value as a society and what specifically sense i'm coming out of us are very specifically christian tradition whether or not this tradition has anything to say about it so how did we get here mandible little bit of a history but this guy's name francis bacon because i find him fascinating an incredibly important to my work as a position so francis bacon was essentially the inventor of the scientific method method and he was a little books that you are going on among others of where he talked about the scientific method for the most important things that princess picking date in relationship to medicine is to say we need to stop them talking about medicine overcoming us and start talking about taking the scientific method and learning how to gain mastery over nature and applying this mastery over nature to the well being of human beings there was this democratic nation but venerable very long history presentation called being over master by your disease and one of the hardest that physicians would bring to the bedside is to help people understand when their disease was at a point where they simply were not going to recover and this is tremendously important because knowing that i'm not going to recover knowing that i'm gonna die princeton university reckoning and doing whatever the work is that i need to be there for my diet and in francis bacon style there were a number of books out there around this topic called the ours maury and a which is the art sometime very intentional very deliberate attempt to understand how we approach the end of our life and what sorts of things we should be doing at the end of our life befriends as they can would have none of this he said the idea of being boomer mastered buyers ease means you simply have not learned to apply the scientific method adequately to gain power program ager so that you can stop dying from this disease and stop being never mastered by it one of the things that this lead to is tremendous growth and our ability to control infractions for example to develop he would there be four cancers and you all sorts of things that seem to truly help people differences they did was in a different place than we are today he lives against her religious background was himself a very religious man and when she could give a clear articulation appoint a proper human in is and when human flourishing properly looks like and he was convinced that in all cases the application the application of the scientific method to gaining mastery over nature would lead to benefit for human beings we don't necessarily share that sort of social cohesiveness in our understanding of what constitutes a human head where web property when flourishing is and those sorts of things that he did work against a different kind of background as it got better and better at this i mean you can follow the history of medicine it became more and more convenient as technologies dr work development and became more advance to pull the technologies into single locations into hospitals for the six would come to the hospitals and all these things would be available over time assessing the early part of the twentieth century with the production of this thing called the flux in a report the education of medical students against the scientific background became much more standardize and the idea that you go to the hospital are we ready all go to the hospital when u product from our sins or could be treated by scientifically grounded positions became the standard more and more dire we've got away from a traditional sort of relationship with families where this is a very little to offer but they would go into the house it gets into the family be understood their situation and they were able to be present with people says it got better and better with technology all sorts of things began to change so for example our physical exam became increasingly needed by instruments assess the server by things that we program measuring in the late eighteen hundreds they began to develop graphic instruments civic accord paul's record pondimin cannibals sort of way the reduction of breathing in the search dennis in eighteen ninety seven began to apply this new technology with x_-rays to being able to look at internal organs to be able to look at new mountaineers without ever touching the patients began extraneous either in the early nineteen hundreds began to develop electrocardiograms so that we could measure the electrical activity of the heart again in early nineteen hundred's clinical laboratories began to grow up they started to flourish he didn't even need to have the patient there you can have a sample of the blood of our pieces they're tissue and you could say the bad and the microscope where you could grow whatever the micro was that was making them second come to an understanding of their disease as you withdrew nineteen hundred's we began especially in the nineteen fifties increasingly to think of randomized controlled trials as the standard for advancing medical science and the idea here was too menendez me variables as possible so that we can come to conclusions that would be generalized ball any human person who share human biology but when you get to the individual level business fear is that how we get sick any physician can tell you about and it's one that causes a great deal of distress uh... for many families and it's one that caused a great deal of frustration when we begin to realize that the medical system that we've come to so much hope into can't make us better if you look at this for this is a way that i see a lot of my patients die and this happens in many different contacts that could happen cystic fibrosis if it happened uh... congestive heart failure can happen with cancer and happened with many different kinds of chronic potentially life on the illnesses with official go along and all have a crisis from their prices their health status and we were action we begin to intervene real talk a little cover they don't quite recovered to the same level that they were rack when they first walked into the house and they go along and they have another crisis the russians the hospital and we intervene they were covered but again not quite to the level that they were out before this happens repeatedly and overtime as it happens it against you develop increasing symptoms an increasing burden of suffering certainly increasing financial burden and a lot of other sorts of things that can impact the quality of her life so what's really happening here has the question that i have with each of these crises we grab ahold of that and we help them to get back to you whatever eyes close the baseline as possible towards the end of a person's life you begin to sense from them that they're feeling desperate because often they're feeling sicker and sicker gets harder and harder to get them back to any kind of quality of life it seems meaningful to them and yet to be read part too not intervene the big issue here of course chakravarty anticipated is dying murdoch you gotta be kidding you don and then be dead it's very powerful siad barre scary and this is a threshold of many people have not fought about so much time right and even as there is this become more frequent and become deeper and you don't recovered to the same level it's not an easy thing simply to begin to think about you're in debt and how you want a manager approached about sanofi reports from woody allen i don't know cheetah mortality through my work or achieve immortality did not die for many people this threshold is simply the most terrifying thing at all human comprehension precisely because it defies comprehension it's interesting to me is that in the past begins religious background there is very often a kind of terror of death there was a terror at don with not without realizing that death was a project there was a deep sense think which the work of confession and ever penzance and of reconciliation with the work that urgently needed to be done before dark and one of the serious things and magical is to simply slip into death in the middle of the night these days for our contemporary imagination which is very text-align individual productivity individual self when it is that i compost in the world one of the biggest fears that we associate with death is the possibility of oblivion now one question that often comes up in my mind as i think about how people are going to have navigate these waters is where diverse scene there many people who've never seen a person back i mentioned many people in this room have never seen somebody dot usually very common we sat dot com feasting many deaths in the community children very frequently times that i've spent in africa in places where we don't have the resources that we have in this country death is very common i've seen very commonly the death of children the death of part people from uh... diseases that in this country would be easily curable and the rural parts of all salvador or the person to america for example but here we don't see that very often we may not see a dead body and we do see that usually made out to look a lot the places that we do see death are and video games com hired vividly remember being obliterated into a cloud of pixel dust when i was playing pac man as a kid no one came mario who also gets the dime there is a game called modern warfare to that i've laid eyes on that has incredibly realistic forms of debt you can choose how to die ladies checkpoint you're back alive again that's a really interesting condos on what is the diet response so far every show he does there is actually a season where apparently they got bored with have died and they actually allowed into the eyes and able to houston leaves today who has a different kind of frailty then they brought came back frankly a fascinating little rock he had whether this is where he had began six years and they were feeding them and there was a lot of media hype of the top of the time and that the search sherry right before actually the day before i think i could be mistaken for the day before a jury sharper dot and this is an incredible uh... sort of national crisis in thinking about your shot her and you know with their comedy they got out and and way dissolving but uh... as i was walking through the uh... airport i was watching from television to television to television as i went from being treated before defiance b_-sixteen and all of them whitney houston courses on there replaces it being carried out to the death of our celebrities where we are shocked that they got and certainly michael jackson age fifty leaders have died from praful triggered enormous intrigue around the world there and kind of death is needed through the years through television comedy the directing counter with death row is something that we rarely actually and it's one of the reasons but it seems to me as a physician that we need a lot more thought about this and that's why i was personally very on the search in the middle of carter for wind there was paid bipartisan placed into health care reform that was considered relatively non-controversial and the provision this um... the provisional out remuneration to physicians to send time sitting down with patients and families talking about options when it looked like a patient was beginning to get sicker from their disease and perhaps moving in to see through there dot compared to seize and everyone about this is a great idea who's turned ensue on the rhetoric of death and once it turned into the rhetoric of death panels there was killed and there was no way to get it back there and the one attempt to get it back and uh... much later wind uh... healthcare college station is being revisited de panels came up again as a political ploy and it was again and so we already his doctors have enough trouble talking about death because we're scared to talk about it we don't know how to talk about it um... it's very painful to learn how to talk about it but do not have uh... yet to have this opportunity where we come close to having legislative support for that and that haven't taken away and the rhetoric of death and sold me a great deal how we approach death in this country it's one of the things i hope they were able to bring up in the course of conversation withdrew all of this through this discussion of a kind of advancing bacon the in medicine the sequestering of medicine in hospitals are denial of death in this country and our great challenges that we have with approaching the top of death are repeated interventions as we get sixty product on this one of the questions that come up to me bob that relates to the got part of this spring is the question what's happened to the patient stories for me one of the places where patients get tangled and technology is when decisions are made without regard for any other part of their story where their life or their view of the world what matters to them in my life for example as i think about my vulnerability on one of the reasons that i'm here tonight varchar swarm is that i do frame my experience of my body my experiences my mortality in terms of my faith as a christian but i also have to tell you that for a good part of my career when i had a patient who relapse after bone marrow transplant which generally means that you're gonna die the first thing that i would do before i would walk in the rain and talked with them about the relapse and about time is to go onto the computer and download every eligible ste clinical protocol that bombay might be able to roll on so that after i have delivered the news i didn't want to deliver which is that your cancer is back and you're probably going to die i could hold up three protocols and say it back we've got some things that we can do i can sign you up on these protocols we can get this done starting this afternoon i'm charts and maps despite the fact but i need that there was no way this medicine who's got a cure and that it was very likely in fact it was not going to have any effect at all because many of the protocols that would end up down waiting for someone at that stage of disease to be phase one protocols which are not asking questions about your foresees response as their primary question asking the question of toxicity how much of this medicine cannot put into a person before the side effects are so an acceptable but we can't go anymore and and immediately destroy before that methodists we start when we go into the clinical trial the people don't understand that about basement trials and yet covering the trials in to have something to protect me from the pain of the conversation and so on that out but that an experimental transplant on alley time by the way this is with her mother submission guided experimental transplant on alley for reports done which was area my research she had at the time of this picture compasses take and i believe two days before she realized she had struggled with neuroblastoma for eight years so at the point that i began to take care of her this is truly the last thing that we had to offer and it was fairly radical solution based on one case report from japan and several years before it's originally transplants and over the course of six months nearly every day i would walk up to her and gets a network and get to know her family she's beautiful brilliant holy re-used sassy twelve year old girl now watch the dot for six months there was one of the most painful experiences i've ever had in my life comment made me wonder whether or not are was made for this job i thought i was gonna be great i thought this was the perfect job for me actually began to question it but as i worked my way through this one of the things i began to realize that was causing the most difficult difficulty is that always so focus on medicine as part of this is a commune project on medicine as worried to primarily but not exclusively for secure without questions that's all i can think about was the biology of what was going on without you can respond to that biology and that's what i did for six months until she's just a bit came up to date came up to date came up to date came up because she talking his first of all this is your life some like you have sitting on a trial run and that is the kind of decisions you make matters that decisions that you make in the hospital in relationships illness reformer ability for your time actually makes sense in relationship to the rest of your story however that story a shapes but one of the things that is certain is that life is full uncertainty a modern struck that are modern age is enormous campaign against risks and uncertainty when i walk through their borders but i'm not putting at tv shows about whitney houston i'm listening to instructions they're being told me overhead about not picking up someone else's back and not doing this with strangers not doing that for a long time when i would walk through they would talk about security level being at level are injured exists this constant sense of of fluctuating the president four this security that we seem to think we walked in the future whether it's security from disease of security from terrorists are security from poverty but when you get sick your story is much more uh... than your that this is about much more than your illness and i don't know anyone who truly experiences illness and biological terms even though in the hospital the language that were missed number with its language of biology i've never met anyone who fully experiences illness in terms of biology the experience it in terms of relationships in terms of lost in terms of fear in terms of what happens to me when i die and because of that it seems to me and i know we've got to have a lot of pre med students in here because to me was just no for being preet soul one of the things that sort of come to you as a position is that we can truly understand the meaning of how someone decides these important things in on the suffering of dying if we don't know anything else about their full story and so i want to ask just quickly a question what is the story because it's a fair question so it's a story where we start with a story about the titanic here the parts of the story now i've got this from brian macdonald and this is really helped me a great deal this is how this is how do you tell a story uh... the part of the story this first once upon a time once upon a time is getting give you the background again stretch david said our fall out the rest of the story uh... matter it's going to be the background to help you understand the meaning of events that come about seven resume once upon a time once upon a time was a ship called the titanic it was one of the most technologically advanced ships in the history of shipbuilding paris set to go on for age and it's a great deal of celebration and music and journalism coverage second harvest and every day this is going to begin to tell you the pattern that's going to be broken by the next artist figures and every day the people on the ship eight wonderful food they play games they wondered at the stars and start they wondered at their wonderful show and one cup also allow but they are part of the story is the i wanna until one day ship ran into and iceberg and began to take on water and because of this was one of our laws in the era and because of this people began to plan strategies for speaking the ship safely began calling out for help and should continue just to check and because of this people became more scared people became are packed an hour to young people who had fallen in love helped each other trying to save each others lives until finally they ended up ship heading south floating on a piece of wood there was only large enough for one and so she climbed up on the way and he but his legs and body hang off the word pauling talked until finally he confirms and he died and he floated away and ever since that day she's kept this in your mind this memory streets your wife there's a part of the story so you're so i think about it as a doctor once upon a time once upon a time of the fifteen year old girl living with her mother a sister intent animals on a farm and every day she fed the animals she loves to sing in the choir she played the piano and scribbled notes for a book she wanted to write but what makes different animals have been and she looked at your arriving at her desk and our beloved room where they're stuffed animals hiccups until one day she began to have bruises spinner doctor center to the city medical center for tests petra dot shepard kenya stand because of this she started dumping the derby but the leukemia was slow to clear and because of this she says from linking that there be to another the hospital and because of this she stopped feeding the animals she couldn't sing in the choir shed new piano in the hospital and began to lose and music and she found a harder to write she's retired i'm afraid until finally became clear that her leukemia was not likely to be cure and need to build decisions need to be made so one of the questions that begins to come up in this situation is what his well being with life per child in a position like this weather problems is that the goal of medicine and of itself can't be the well-being of the child the scientific judgment that medicine actually has access the source of what constitutes well-being what constitutes the decision what constitutes value is rather the story of the child's life and what's ironic about medical treatment especially as we did have been recovered have been recovered debris recovered its occurrence occurrence of her is that the nears unity of a person's life can be program by medicine by all the procedures that are gone and make it harder and harder for that person to have any sense of what they want to do and what they ought to do the relationship to their own story while we procedures for the dying process and in my experience is often a place for deep questions of faith arrives this is often the question off in the place where we begin to ask important questions about our experience and wider the larger story that relates to and one of them interesting things is that for most of my patients the decisions to begin chemotherapy where the decisions to switch chemotherapy for the decisions to have radiation or the decisions to have surgery or someone or some other sort of church of intervention is always playing towards future life but when we get to a place where someone's not going to be cured we're no longer talking in terms of of there hope to be cured so that their life to be part of the ones that we're talking about and in their lives and it seems to me that if there's anyplace where the christian marisa has impact it's in your hoping someone on to understand the way in which their story even to directors approaching fits into larger narrative that guy is in control of and uh... this is the thing that shapes the part of the story figure is and ever since that day to remember she gets until finally it looks like a routine has not been beat you are what's the ever since that data look like seems to me that matters a great deal what we think this is part of the stories that look like now one-way to think about it is uh... to think about the ways in which you are going to be remembered in the minds of people have not yet dot and there is a great deal of death to that kind of sense of ongoing presence in the minds of others but there's another way think about it it seems to me if we're truly going to talk about the relevance of christianity to how experienced on this and suffering and death and that is to understand the reality of god's presence in these experiences adequate for you from this morning in korea tender who uh... whizzing outlets and then was an ratings broke concentration camp with her sister betsy and her sister betsy actually died and she said is there's not a pittance indeed the god's love is not be purcell it seems to me in a game here i'm speaking very much as a christian and that's important to know progress can be a part of our conversation after this receipts needed when the threshold is death that really matters what death actually is here's a quote from saint paul you know our our major is wasting away are any jews being renewed day by day for this site injury affliction is preparing us for an eternal weight of glory beyond all measure because we look not at what can be seen but what cannot be seen for what can be seen is temporary or cannot be seen as a child interest and a mother and trees are very intertwined it's a big difference to know that god is good verses actually knowing the businesses dot as a living reality this is something that can become profoundly imported at the end of life we were thinking about how we want to negotiate paradigm now and a little bit when we begin the conversation one of the things that are used in the race is a recent paper in the journal of the american medical association which has some surprising results and light of the way that christianity articulates the end of life and how we should approach the end of life but one last quote that i wanna leave you with from saint paul contacting despite powerful has to do with the relevance of the resurrection for how we view and what his exit pollsters i'm convinced that neither death your life angels the rulers for the stress and produces com nor powers nor height everything else in all creation will be able to separate us from the love of god in christ jesus our lord the sex is something that is a very powerful articulation a power christians at least think about the end of life and think about the power of god in the face of something as frightening as that but only had one more day that i'd take away from the christian tradition when i think about the way in which experience nonetheless and i'm grateful that because unless some run over by a bus from not playing falls out some of active duty at some point doctors and walk into the room to read we'll fix this and faces i frequently hear parents worry over detention between their genuine hope in god as a sovereign god and they're genuine senses here and isolation and anger abusing their child it seems to me that's the story of jesus is life death and resurrection has given us incredible freedom to all those things intention w what i mean by that we jesus was approaching the end of his life in the garden of destiny he great please let this cup pass from don't just happen he criticized the time father please but this cup pass contrary to their time please let this cup pass use it in a way and he was mailed to approx on the cross jesus said two things that's harrod's in my own experience become nearly traded matter for the kinds of tensions parents and family members who are losing someone who love have to hold together one of the things he said from the process this is the judge would be the next day so he said today he will be with me in paris the statement of really adorable coming from the lips of jesus but the same gives us on the same crops later on cried out my god my god widely perceived there seems to me that a tradition bacon will too price and hold those together today you'll be with me in paradise and my god my god might be for safely position he said that offers some very fruitful in size for those of us who are going to suffer and that are suffering even as we hold are going to laments the loss ever faced the last thing i want to throughout their as somebody who will be dead along with all of you off because everyone in this room is older than ours and she died so guarantees are off but the less you can do but believe it or life more need to do about its for athletes that this is a lesson that we can carry with us each and every day as we live our lives faithfully in response to gov as well for his leadership dot and there may be times when instead of understanding dot recently phil alone and for sega that's part of the journey the david here told we can't fix their senior year and i has not been bass first data star thinking about the fact that we got approaching death well and approaching it faithfully actually is a process that we do in the course of living because the tumor choose that will hold use that when you come to the end of your life our patience and courage and those are two things better develop from living life in a certain way attending to spread attending to it's doubtful but also attending to the fact that it does stopped and with that i'll stop also and we can get our conversation cities sykes and duties don't you it's hopeful you does mystery uh... back phase decision again easily resolved these games that's it use it's so when i think that it's a great question and i'll tell you categorically that's when i walked into the room with a family who'd is about to face things like this the only question that i begin with is who's in front of me what's their starting point where they act and wherever they wrapped that's where i began i don't preach i don't proselytize i don't converts i don't do any of that arm hyatt lives and for what their worldview is and that's where i began because this is their story i have no idea what direction this is going to go for them in terms of their story and it would be on utterly presumptuous of me to take over their story and to begin narrating at with my story and my view of what the world s and i take that to be bb re nearly absolute category of approach and so what i consider as long as i'm going to be using the language of story rather than merely the language biologists biology and we all know how to talk about that but when it comes to stories the stories i'm interested in is the story that their work and it requires time because frequently patients will know they look at when this is uh... there's across in my ring and there's a lot of times when patients will have will know me because i'd treat patients for years sometimes if you could you comment and you are a you have um... ko acute lymphoblastic leukemia for example if you're a girl you're going to be with me being treated for two and a half years if you're a boy who treat you for three years and after that i'm gonna follow you aren't role we fall into two years out until you're eighteen whichever is longer so we're going to know each other a long time and it's likely that my patients are going to something about my background what i'm interested in is where you starting with your story enrolling in there that fair and if you want to see please feel free to but that's how i bridget compliments s tags at yahoo has filed a common does committee wants the job sarah that yours the f_b_i_ let's share members disease it uh... just story islas dot lend explore beyond susan dot here's a couple of responses to that central courage um... i think a there's there's two kinds of on there's there's two kinds of ways that i would think about christopher strength is probably more obvious than the other way com many of the day uh... decisions that have to be made whether their decisions in the direction of treatment for the decisions in the direction of say what i value is this and i no longer want and now walking past a lot to be kind of intervention knowing that i'm walking into my house once and for all to dr that seems to me when kind of courage that is acreage to ask the question fits my life as i've lived it so far and then to do it instead of just being swept along by technological responses to changes in the house uh... which can also have the second kind of way that i think the courage manifests is and asking questions about the truth of things because phyllis and suffering and the potential for a dime is in veritable cauldron for testing for lindsey approaches to choose things that will not be the distance but also for finding improving wet really will go the distance and it seems to me that something's crumble in the cauldron and other things become stronger and certainly been the case in my own life com as ivp in fact onto periods of sustained it not in the middle of my hands up and the courage part is this that we need never be afraid of the truth of things no matter what the truth things is in the course of our exploration of what's true when we discover to things that conform to our hopes we should be willing to rejoice and when we discover chew things the conforms our fears we embrace them but that requires courage answers the second way in which i feel like in the middle of illness and in the middle of suffering in the middle of dying it's very easy to say oh you're off the hook you have to worry about all these normal human beings library over trooper morality or anything like that now in the cauldron that may be one of the places where you discover things that you would have never discovered elsewhere but some of the navy destroyer and if they feel like truth right thing to do is to be courageous embrace and even if they're pregnant and so that the second way in which i think courage options out as far as patients carers um... one of the most important parts about about patients is that our bodies are slow to respond and so most of the process is in our bodies are not on off switches they're slow to challenging difficult fein's at my hospital d'amato is at duke there's hope and usually it's you know not hope for someone who's going to have a compassionate presence while you die it's hoped that well you couldn't journey that hospital someone did it or maybe i'll get your hair in the middle of that in this things don't move quickly and it can become frustrating and scary and i think that uh... you know kind of patients towards our body is is uh... is limited by a lot of other ways that other people could could mention votes here seventies i see a lot of profanity burger solutions dr space stingy doctors now yours so jury sits beside eyes choice on-screen jeans patients did support juror in translation position you know his justice response yours just joined us i think actually cases very very often uh... i mean this is like a real a regular thing that i counter and begin i don't try to convince them to do anything because i don't view my role as arm persuading them to a certain view of what's valuable but what i do is two things no rain but well need three things actually number one is to acknowledge what's at stake how scary this is a why this is such a challenge why this is a difficult to back she bring that into the room because that's something that that you know older kids teenagers and parents have younger kids well hold in the background sometimes the second thing that i do is to make sure that in the course of talking about medical decisions we'd talk about the larger things which is what you value which you want your life to look like and that sort of thing you know so we make sure that we bring those things to be tabled the third thing that i do that is to uncovered the costs art that they may not think about that are associated with these interventions and sometimes uh... this can be incredibly helpful and you can actually draw crime studies uh... i'll give you an example uh... many of the studies that have been i mentioned that i've put patients on a phase one studies and in phase one stays you generally have to be present at the hospital you have to be present to get uh... multiple blood draws for pharmacokinetic studies you while will not have dr uh... trial lawyers subsequent uh... corollary medical things that happened covered by insurance because they very often won't cover experimental therapy since it was going to be uh... financial cost medicines themselves can have side effects that can impact the quality of your life and in can certainly see if you look at a meta-analysis of phase one trials what you find is that mom seven percent tumors will have some response to phase one trial but by response any in the tumor may go from here to hear it's not a cure doesn't necessarily prolong your life and so it's very important to understand you know what it is that you're signing up for and what the costs are and the reason that i have been value questions first is that the fact that someone who says you know what i really care about kids uh... like this girl being on my farm being around my animals being at my desk so that i could work on my book being with my pillows and i stuffed animals that is where i feel safe in if i'm not there i'm stuck in the hospital and miserable i hate my day i feel alone and i get woken up all night with vital signs from these well-meaning nurses i don't like it and so if there's something it comes out of the value discussion it seems incredibly important then i make sure that lease that the costs in terms of trunking that value is also brought to the table but it's not for the night to persuading them it through the night to making sure that we may make a decision they make a decision that's actually in light of the truth is that so that's where i try to act as a server not so much a persuader but somebody who's been here thousands hides i've seen a thousand patients do this we tell you what it looks like in the new decide if that's really bad that's not what i do leaky right here adhesion king access speaker har with sochti s seeing acts uh... elite he honest uh... and pc times and stop negativity foster monthly power casting dot worries back casket work too and savor so one thing is that they're they're definitely places in my life arrest and mute in front of suffering and just cry how else to do uh... it seems to me that before also some sort of satire and uh... i think about my ever since that day but as far as i know right now i'm still had me and every day just with a lot i live my life there in relationship to my death i think about my death every day on deliberately so sometimes vocalists to the irritation wildlife my kids who really get tired of me going on and off the scene so important to me and every morning when i wake up lesson time and prayer i spend time deliberately in a process of cracked it gratefulness for life and for a while as my days go by right now i'm in the pain accuser before and they said no no no that i could have easily dot from if i waited one more week together doctor uh... that informs the way they're accurate eyes my values one of the things i'm quite certain of is this that's i've got a bag of days everyday region crap alloted a have to spend it i can give you the hand and say hey look at you know that days on the line akin to the bank and save it have to spend it an interesting thing about this thing is that once i said it go off i've traded it for something and the other weird thing is that i don't know how many of the things i've got my back that's the trick and so when i'd trade my days uh... i wanna make sure that entry here for something that's worth one of my he recover bowl days not knowing how many more these things i have in the back it's on a daily basis even though the and ever since that day is something that occurs at the end of my life mile and a m might negotiation of value and of love and of relationship is dying in these kinds of terms an arm and so that's the image that i would use to say you know how how i live at uh... you know it's your question get if i didn't understand it and any ox dot he's for com suffering hia that's for me along with yeah because because it's an extremely important question and i'll say i don't bygones on i mean i bob there are a lot of it books this is the odyssey how is it that a guy that we were shot of love and soft as creator can show up in the middle of suffering not to do something about it i'm a doctor suffer that all right no i have great answers and a lot of my experience we've got it is not something where it's predicated on the first getting the answers right to make sure that this relationships and work out in maine going with the relationship too much more like falling in love and there's a lot of stuff that i don't understand but there are a lot of things that i experience in the course of growing in my relationship with god that leave me unable to resort to explanations that satisfied not ready time on p_r_i_ c and i know the great arguments i know they are really smart people like album plan to go who writes incredibly persuasive argument they don't satisfy any in the middle of suffering because what a child dies the only thing is really going to satisfy me as for the child not to dot i want the kid back and so rather then having explanation of god in the middle of suffering usually what i do is to take a hold of talk to us by the solace of lament and i just limit the loss and do it in the middle of uh... and i just told the contradiction to go what feels like a strain confusion can and that's the only way that i i i approach a i'd be happy to send you a list of books that i think are incredibly deadly email me yeah 'cause there's a lot of them barros somehow and again i'm just speaking out of my experience today would wear that now bright arm are provide an explanation that any parent has ever found satisfactory as they struggle to cancer that they don't abandon gone for the most part uh... they find a deep abiding comfort in the middle of confusion it is starch uses there that spoilt out uh... to broker a relic from i mean it broke i could not believe in god and it was not because i didn't want to believe in god but like i said what i was interested in is the truth of things by and not interested in comfort i don't want comfortable police two weeks and interested in what is true but the universe and in the middle of that particular experience i was in so much pain are still to this day don't entirely understand the dynamic output went on in there but one of the things that was fascinating to me is that i knew enough to continue my search i knew enough to remain open to the truth but i also knew enough to know that's uh... it would be if i were too uh... continue to grow with god and i would describe myself at that point has eight frightened agnostic because it's a disorienting to me to find myself i'm able to believe uh... it was an assertion there is no god it is pride and pain and i find myself unable to believe they continue to go to church of the civilian and we do the eucharist every sunday and uh... i continue to take the eucharist and and i had a frightening experience com as i would pray and i would take the eucharist i thought the far left wallace in that stage of worship and then i would walk back and i'll feel at the same began and this went on for some time now i never waivered from wanting to know the truth of things and again like like uh... the question about courage uh... that that was that was where i was i want true believes they were my true believes match my host all rejoice and where true believes match my fears i'll try to find the courage to embrace that and so i was interested in truth the process of need movin from that experience to kind of healing to a deeper understanding of what my work is as a physician and to a deeper understanding uh... god's relationship to us in the middle of suffering not in terms of propositions are explanations but in terms of presents is something that we take a long time to talk about and and uh... it's very important to me but it was a great deal of time to talk about but there was a process um... that was one of the most important things that's ever happened in my life value this is the last thing they are saying uh... there are many ways in which to god that i ceased to believe that is a guy that i still don't believe because they were aspects of god that i was hanging on to that were interrupting my ability too uh... pursue truth and they needed to go away and citizens in which it felt like he he is but what it actually was would actually turned out to be is for growth in my understanding of god and so the fearless best up believing and uh... was an image that probably needed to be i'm down anyway say that i could learn more about that now as i encounter things like that i no longer experiences in that way it was just say disorienting i did in the house to describe it and i wanted to say two things about what my experience was credit is well it's not from what i said to me and one of the main reasons in fact it's it's one of my it's one of the most meaningful things that i do i'd look forward to having the privilege of being present when people are struggling through this two very different experienced and then when i use and part of it is the car is that things that need be broken that were broken over this girl and her friend emma grace once they were broken put me in a position to grow into a new approach to being present one of the things that i learned is that part of my trauma and part of the reason that i have waited talking about death for sale on despite the fact that forty to fifty percent of my patients were back is dead highways brought up in our culture where the tools that we had our says all were the language of professionalism the language i've seen it bioethics about time even absence justice not much sense and uh... the notion of elders maintaining a proper distance so that we don't and it turns out to be able to rubbish the only way to do it is to learn what it is learn what love is and to learn how to be president and i'm sure you that there's a way to the loving the president without resorting to the language of distance or boundaries of professionalism or stand about effects and in my experience it's deeply rooted in love course tomorrow my view on love i mean this is this is part of my this is part of my prayer it actively becomes prayer before i walk into a room where i'm gonna do that because that's one of the things that i do now this dissension myself interpret there's a very different kind of experience in one of these days are better at articulating i just absorb bummbly tonight i can get it out by tom here and i A actually don't mind teaching professionalism and those sorts of things because the teacher motion on morons from hurting people but the problem is that it's just not enough it does it for me it didn't get the distance that he was doing the had played a role dr point um... but there's something much deeper than i think is well worth exploring but i think that this deep breathing that we explored does require you know a lot of contacts outside out biological language that we use this doctor's and way that were trained out there there's something missing train x s well searched its it's its he is splits wins it's space eyes or bounces well here first of all newton fiber dot pretty important noon five that what he was doing is actually uncovering um... interesting truth seems about god's creation and so knew it was a thorough going pius darlin whereas a reluctant um... agnostic and in the last of his writings um... you know he express real reservations about whether or not to write such a stark contrast between what his theory implied and what he had come to understand about the possibility unsigned really annoyed when people called him in eighty s uh... he said i do not want to be called an atheist i am not canadians now when he began to describe what he was it sounds very much a kind of a kind of a risk the chilean as a none of those three seem to me simply to fall you know categorically indicando on the side of a lot of scientists and therefore i don't believe dot there is anything you need about science is that as far as i can see there a lot of things that are developing that are pushing in the direction of potentially finding a divine creator a more satisfying account of what shows up then the accidental emergence of the universe from nothing soon fundamental things changed in the middle of the last century when it became clear from bell laboratories detection background cosmic radiation that's contrary to what we had thought for a long time universally getting mustachioed mightily resisted in the scientific community as having potentially religious over time and so uh... it seems to me that there are many ways in which uh... you know we could spend hours talking about uh... different aspects of science backed by no means uh... brington and the possibility of got buck coming out on three things in and they are starting this person's massive it's incredibly important so the first thing is dead problem it seems beary reasonable to ask the question what kind of thing just science inquire into and what kind of methodist science shoes science inquires into the reality physical work what a test that's what it's studies that does a incredibly well and as it were has more and more about the nature of the physical world miller's more and more about ways in which to impact the physical world to alter it to begin to use that for technology is the reason i'm here tonight because for a new lease principal works the airplane stayed up if you say i'm going to do fine the only with german knowledge as knowledge that's accessible this particular technique and then you use that technique and you don't find and knowledge different from what that technique is capable explorer anything else that there is no knowledge besides the knowledge that can be gain hideki access by your technique your logic has gone terribly wrong book icici began offer your eye to say that only this category of is getting counters knowledge then opry or i you excluded something that in principle is not accessible too you are married of investigation if it turned out for example that the motive investigation that's most likely to help you stumble upon god's prayer and you're not paying interest apprised of your fine dot i'm not saying that that's the case of just using that as sort of a simple logical example the last thing that i would say that over islam most of us who spent a lot of time in scientific disciplines and for me it's mostly biological disposable really interested in physics on have to listen to experts and other barriers of science and taken seriously but when i look at biological sciences for example it seems to me that for someone to say well given evolutionary absolutely camps believe in god is the sonics share given that looking at the same evolutionary data francis crick is making its stephen jay gould this after a few straight years but it's also the case that working at the data evolutionary biologists simon conway morris who is one of the top three evolutionary biologists in the world who teaches paleontology a cambridge university and who did absolutely groundbreaking work on the came the an explosion is an orthodox christian since new someone look at that physics married stierheim who's making ads who's ass well what was there before the big bang in his answer is in theory then you look at someone like john bowman who did astonishing work inquired physics nineteen seventies who taught mathematical physics at the university of bridge who's the president of queens college cambridge his name congrates it seems to me that paying attention to com people like that people like john lenox oxford mathematician who's a christian should at least you shouldn't be convinced that there are also i think i'm remorseful best-selling tells us in the world we are in a situation serve tertiary message you know of course not not at all the reason i point to these people is because these are top scientists who do not see a contradiction between their astonishing science and their fate with that shit is not the convention but at least to introduce a kind of humility into the discussion rather than a sort of a political arrogance about the relationship of science so that would be the only thing that i would introduce with with those folks but uh... redone and you may find yourself in even deeper waters because uh... they are amazing thinkers chapters art slackers it's workers seems like aligns him spirits years our house yes armies uh... long well i think that that's very good question i'll tell you i think we need to start i think that that the church has been largely absent for most of the conversations about health care reform and i think health care reform to be an issue not only about the body and about stewardship of the body and about the relationship of our own illness suffering and dying to the life death and resurrection of jesus but i think this also to be an issue of things like distributive justice and the church needs to get its act together as i would say the place to start is within communities of faith actually raising the issue and talking about it and making this an active being you know that's addressed an inside the church that's really where i would start uh... uh... because i think the into our communities of faith begin to have a more robust response this can be very difficult to know and then but i don't mean to like controlling the politics that's not what i mean i mean just being the church and knowing places that we think about these things uh... because many people in the church act axiom on side effect is business jenna study that shows that this is the last thing to say it shows that uh... if you look at the request for intensive care at the end of life and you ask religious people nonreligious people who would you guess embraces the most high-tech intervention at the end of life is the religious people there on saturday so i think that there is arnelle walked out a next time i come into our backing to church needs to get on the spec without okay i put a government for more information about the bill tush toward including additional recordings and a calendar upcoming events please visit our website at their tops dot org