 Nice to see so many people here. Let's unpack the chairs so that people can sit along the wall. I don't even need this one actually. I'm Christine Mitchell. I'm the Executive Director of the Center for Bioweapons. This is Bob Prue, coming in with the Faculty Director and the number of our fellows along with others here. I want to introduce to you Paul McClain, whom I have known for more years than I'm counting. Who wrote the book that we're going to be talking about today, Bloodlines, and he will tell you about that. I want to tell you that in addition to his background as a sports writer for the LA Daily News, he, after he married Jody, who is also here, and they had a child that some of you have read about, became a stay-at-home dad and also continues to be, as you know, a writer. In addition, he, the way I got to know him, is that he became a member of Harvard's Community Ethics Committee, which is a group that Carol Powers and others who were interested in bringing the public voice into bioethical issues that people in hospitals are facing, put together. And so he has served both on the board of community voices in mathematics and on that Community Ethics Committee and has been the chief writer for the Med Ethics and Me blog that Community Voices in Medical Ethics, that Paul does, or mostly does. He just told me that he was in recently to record for WBUR, a reading that he did based on a piece he wrote for Cognizanti about... Hoth, whom you see here, is the dog that he will tell you more about. I also, lastly, before I turn this over to Paul, just want to say that Martha Montello, who is on our faculty and teaches the narrative ethics course in the graduate program and directs the writing support program for our master's students, had planned to be here and unfortunately she lives... That's not unfortunate that she lives in Kansas, but they are getting slammed with a snowstorm that meant she had to leave earlier today than she had originally planned to go. And so I'm going to try and channel Martha a little bit and as we get to have a conversation about this book and the work that stories like this do in addressing ethical questions. So Paul's going to start and then we'll, for about half an hour or so, and then we have a little less than an hour for conversation about bloodlines and about the kind of book that bloodlines is. Thank you. Thank you. Thank you, Christine. And feel free to... I brought a couple of copies you can pass around and people can have a look and get a sense of what it is I'll be talking about. So I was very, as you can imagine, I don't do this very often. I was very nervous this morning and I was trying to get, okay, how am I going to like stay in my skin today before this thing? And so I did something that I used to do most weeks when I was in the fellowship here every Friday morning and I would... So I listened to this podcast of the show On Being and it was timely this week because it was this interview with this 90-year-old, what is his name? David Steindl Rast. And he's this 90-year-old Catholic turned Buddhist monk and he was all talking about gratitude. And this guy could parse it out. It was like gratitude as distinct from gratefulness, as distinct from thankfulness, and I could not begin to sort it out like the way he did. And yet my story is if it's about anything, it's about gratitude because it's about, you know, having my daughter's life saved. So, and anytime I'm in the presence of physicians and nurses and people who work in medical care, it's like that's the first thing I want to remember to say is thanks. So with that, and I'll try not to read completely and try to be a little more present, but I get lost if I don't have it written down, so bear with me. And I will explain the dog to you later, but as I'm kind of having this emerging new career that I'm creating for myself, I'm doing a lot of social media. And since cute animals are kind of the heart and soul of social media, I figured I could start cheaply by introducing you to my dog that way. So, I'm not going to name everybody who's here, but I do want to take note that the graphic artist who created my book cover is here, Kristen. She told my whole story in a page. She told the whole story in a page, so she's a lot more succinct than I am. My wife, Jodi, is also here, along with other family and friends who know this story very well. There were participants in it. Hey, Patrick. And in part, my story is an appreciation of the sustaining power of family and community in a very difficult time. Pediatric medicine often struggles to understand the interests of the patient separate from the family, and it's not so easily done. Autonomy becomes like a fiction we cling to. So, the title of my book is Bloodlines. It begins in Scotland in 2005 when I was boring my daughter with reminders that this is where her people are from. And all the while, her real bloodline, the one that was keeping her alive and well, was disappearing, and it took a stranger's bloodline to save her, and it did. So, amid my awe and wonder and gratitude, I became obsessed with this fact. My daughter was cured of an illness that would have killed me as a child. There was no cure, and then over the course of my lifetime, there was, and that's extraordinary. But how did that happen? Even after writing this book, I still ask that. How did that happen? So, it's a real honor to be invited to speak here in this room, especially. A lot of great discussions took place in this room. When I was in the bioethics fellowship, most of the lectures were in here, and I more than once heard that an issue seemed less about ethics than it was about communication. And I don't accept the distinction. Good communication is the foundation of good ethics, but it's time-consuming. Good communication just takes time, and doctors never have that. That's one thing they just don't have anymore. So, this is what makes health literacy so important, and informed consent so difficult to achieve. But I'm not a clinician, and I have no history as a medical or social science lecturer or educator. I'm a writer with a story, so this will be a little different from the usual in this room. And I'm especially grateful for the opportunity to connect my story with bioethics, the conscience, I think, of medicine. So I'll begin with two bookends. There he is. One is from my childhood. Engineer Bill taught me to drink milk. He had a TV show with a regular bit called Green Light, Red Light. When light was green, you drank your milk. When it was red, you stopped. If you gulped, you lost. If you drank at the wrong time, you lost. You won if you stopped when you were supposed to and proceeded when you were supposed to. So with milk as a metaphor, Engineer Bill could be an ethicist. So the other bookend. Last summer, around the time, last summer, around the time my year in the fellowship was ending, Harvard psychologist Stephen Pinker wrote a column in the Boston Globe, memorable for a phrase directed at bioethics. Get out of the way. In other words, no red light. So Stephen Pinker is my other bookend. So there's no one thing in my, there is no one thing in my daughter's illness and cure that inspired my interest in bioethics. But when Engineer Bill was on the air in the 1950s, if you were a kid with severe aplastic anemia, you died. No exceptions. And though Pinker might call this wooly thinking, it's useful to me to remember that while kids like me were learning when to stop and when to go, the Tuskegee syphilis experiments on African American men were in their third decade and would continue into the 1970s without a red light. But my story is not about Pinker or Tuskegee, but instead a consideration of one real experience of scientific progress in clinical medicine and amusing about social conscience. By the time Stephen Pinker declared a green light, aplastic anemia had become treatable and often curable, even for patients with no donor match. I think Pinker assumes research is more capable of self-policing than I do. And yet he's onto something with get out of the way. Knowing when is the challenge. So this is a, this photo is a few, a couple months or two, a couple months probably after the transplant. And we're at the, we're looking up at the climbing mountain at the REI in Seattle. And my daughter who would, would ultimately climb that mountain. She, she was kind of envisioning, boy, am I going to be able to do that some point? So I, I love that photo. So a little, oh, that is me. Yes. You're shocked. I've never seen you from that angle somehow. Is this a good thing or is this a, is this a, okay. That's Jay. Yeah, yes, yes, yes, that's my, yeah, that's Jay. So a little background. I left my career in newspapers to become a stay at home dad when my daughter was three. No regrets. One of the best things I ever did. I went from working 60 hour weeks in a stressful business to being a full-time parent. That was a privilege. But when the illness nearly killed her it also stripped it bare any illusions that I could protect her. I had to rely on others and I did. Trust had so much to do with that. So I guess it's no mystery that I would emerge from the ethics fellowship as a communitarian with a healthy respect for the idea of autonomous choice but a healthier respect for its limitations. I'm now the father of a young adult who as a child was cured of aplastic anemia by bone marrow transplant. She's my only child. And writing a book about that cure I came to understand in a very different way, a very personal way, the science that allowed it to happen. Some of that science might get a red light today and maybe deserve it. My question is, how long can you wait for benefit to outweigh harm? In other words, how do you consider harm to one patient with benefit for another 50 years apart? I'd suggest there's no justifying this without considering the common good and the powerful motivation to treat suffering and cure disease through advancing science and understanding. My daughter's cure would not have been possible without a high regard for the common good and the future patient. For almost a decade, I've completed a lengthy questionnaire from the Seattle Cancer Care Alliance about my daughter and her health. I completed the last one earlier this year. My daughter is 18 now and it becomes her responsibility. The questionnaire always is accompanied by quotes from transplant survivors. Some are pure gratitude. Others are mixed. Still others of the wish I knew then what I know now variety. For the latter, chronic graft versus host disease is an unexpected burden. Not all of the quotes are from survivors. Some are from family, grateful or grieving. And though the quotes specifically concern stem cell transplant, I shared some of them with the Community Ethics Committee when we were studying listing criteria for organ transplant. The quotes informed the committee's report to Children's Hospital and the Harvard Ethics Leadership because they were helpful in understanding the emotional aftermath of transplant. There's really no reliable way to predict the outcome of transplant or to prepare a hopeful patient or family. Patients want the cure and tend not to think about the aftermath. We were very lucky. Post-transplant for us was better than we expected. Not as good as it is now. A lot better than it was before. That's my simple understanding of research progress. Weighing harm in the short term with benefits in the long term is more art than science. And it requires of patients and research participants that altruism carry significant weight among ethical values. Not long after the transplant, before my daughter was released from Seattle Children's Hospital, my wife commented on the surprising absence of graft-versus-host disease in even a minor way. And the physician's assistant, a guy named Dow, smiled and said, that's why transplant docs love aplastic anemia. That might have been the first time someone said that. We were in the midst of something extraordinary. So I'm... As Christine mentioned, I used to be a sports writer. It's going back quite a few years. But last year, after the Patriots beat Seattle in the Super Bowl, I wrote a love letter to Seattle that the Seattle Times published. And in elderly... I'm not going to revisit that story. But there was an elderly woman in Seattle who read the story, found my number and called me. So bear with me a moment. Both of you can all hear this. Oh, and thank you for being here. I've got an anemia. We have two boys who haven't been able to much. Each different family was given a 50-40-20 to... get a solution for the problem. I... I'll have to call you back if I'm going to call you for a sleeping state. And I'd really like to talk to you if that's what you're saying. Okay, thank you. That was in the 50s? Yeah. So I never met... Could everybody hear that sort of? I mean, it's not a great quality. So I never met this woman. She didn't leave her name or number. And I never... And she never called back. All I have is this recording, which I play today for two reasons. One is personal. The essential thing I want as a writer is a reaction for one person but for several years, working with the Community Ethics Committee, I've studied profound quandaries in clinical medicine. We rarely stray far from end-of-life issues. More recently, I've been drawn to research ethics again as a community member through volunteer work with the Research Subject Advocacy Board at Harvard Catalyst and now as a co-investigator on a pending study. The study is part of what is known as the Obamacare Initiative that seeks to determine what's most important to patients involving them throughout the process. And in a way, the multidisciplinary nature of bioethics has expanded or is expanding to include the patient family and community perspective. And I think this is a good thing. I'd be interested to hear your thoughts. So here's the second reason I wanted to play this recording. A half-century earlier, this woman was me showing up at the hospital desperate and pleading for some kind and skilled stranger to do something to save her child. That happened to both of us. But there was nothing to do for her sons. It was the 1950s and her sons died from aplastic anemia. She didn't say that specifically on the message, but that's what happened. A half-century later, my daughter was cured. And in a way, her plea to doctors to do something. And that essentially is what my book Bloodlines is about. So Edward Pellegrino is someone I'd like to read more of. Maybe some of the fellows and master's students have read him already. He taught his medical students three questions. What can be wrong? What can be done? And what ought to be done? That's a simple and useful checklist. I think about the woman from Seattle who lost two sons and myself, whose daughter was saved, do something, we plead. Her sons died. My daughter was cured. In a half-century's time, it became possible to do something. Getting there was a long, slow process. In that time, scientists came to understand tissue typing. The blood supply, deadly for some as recently as in the 1980s, improved. New drugs bolstered immune response. The immune suppressant, cyclosporin, was developed and gave doctors a tool to control graft versus host disease. If I ever do a new edition of Bloodlines, I'll give a lot more attention to that miracle drug. I'm a member of the Ethics Advisory Committee at Children's Hospital. And it seems like every month I sit in at the meeting and I'm overwhelmed by stories of children and their families in horrible circumstances, the impossible choices. And the doctors and nurses of children seeking clarity on the Pellegrino question, what ought to be done? In thinking about the scientific process of getting from children dying in the 1950s to children cured in the 21st century, I have two more questions. How long is ethical memory? And how forgiving? These are moral questions, maybe a little wooly as Steven Pinker might say. I don't really expect answers, but it might be worth discussing. My daughter's cure owes debts to human victims of mustard gas in World War I and to human victims of the atom bomb. Those horrific events on a massive scale were hardly intended as research and yet lessons learned and questions inspired contributed in crucial ways to my daughter's cure. Which means my daughter, alive and well in 2016, benefited from harms to others suffered years earlier. As do many treatments and cures. And forgive my oversimplifying, but the impetus for looking at chemo and radiation in that way came from the Seattle woman and her two sons dead from aplastic anemia. They would have been about my age now. She probably said more or less the same thing as another mother more recently at the International Summit on Human Gene Editing. This woman had also lost a child as something that may become curable. Needless to say, she's not a fan of a ban or a moratorium on gene editing. Just frickin' do it, she said. Just frickin' do it. At this point, I ought to be clear about something. I feel no ambivalence about the moral goodness of my daughter's cure. And I absolutely understand just frickin' do it. I probably said something pretty close to that myself. And yet how does a person of conscience come to terms with what is essentially a collateral benefit of harm done decades before? I've developed a great tolerance for ambiguity. As a coping mechanism, it may be the best I can do. But I've also developed a strong belief in research oversight. So forgive the darkness of this photo. I hope you can see it. This dark photo from the New York Times is of a woman in rural China extracting from pig intestines what will become the anticoagulant heparin. Heparin was vital to my daughter's cure. She became expert at injecting it. We had a tray and a checklist, latex gloves, saline solution, heparin flush, two or three sanitary wipes to meticulously clean the tip and cap of her Hickman line. That photo still gives me a chill. And I think the woman, I link the woman directly to a continuum of which my daughter's cure is part. Pigs and their intestines contributed to my daughter's cure through intentional authentic research. Also bears and their bile. Immune suppressing serum from horses and pigs. I owe a lot to pigs. Even more to mice. Everything to beagles. Beagles are the last step before the clinical trials. From this curative menagerie, I can't forget the medical scientists. One of them was Eloise Giblett. More on her in a moment. My daughter is now a high school senior. She was seven when she was diagnosed with severe aplastic anemia. The most frightening of her symptoms was that she couldn't stop bleeding. All of a sudden, for no reason we ever determined, she lost her immune system and any ability to restore it. But 80 transfusions later, most of them just down the street at Boston Children's Hospital, she got a new immune system. Her marrow donor was a 20-something med student who is now a practicing pediatrician. We're Facebook friends. There she is with my daughter. One morning in spring 2006, she traveled from Columbia, South Carolina to Wake Forest, had her marrow harvested through her hip. All she knew about my daughter was girl, eight years old, aplastic anemia. The bag was placed in a cooler and put on a FedEx plane to Seattle. The guy who brought it from the airport looked like he could have been delivering pizza. A little before midnight, it was hooked up by a nurse to a pole besides my daughter's bed and began to drip into her through the Hickman line that was invented by a scientist approaching retirement when we were in Seattle. That it was possible to use a stranger's marrow to restore my daughter's marrow was astounding to me. It still is. The reason I even know Eloise Giblitt's name is from seeing her obituary in 2009 and learning she was a hematologist who did early science crucial to bone marrow transplantation. She worked with transplant pioneer Donald Thomas, a name I knew. I saw his portrait every time we stepped off the elevator on the fifth floor at the Seattle Cancer Care Alliance. He became like a saint in stained glass. Donald Thomas was a Harvard medical grad. Let me get back to you. There he is. He was a Harvard medical grad from Texas, whose first lab was in the original Jimmy Fund building. He spent a lot of time with Sidney Farber on the Leukemia Award at the Brigham. What a grim place that was. Frightened children in a lot of pain. Little to offer other than compassion and maybe a bag of blood. A lot of crying and a lot of dying. The sort of place where a parent like me might be found pleading with the doctor to do something. The sort of place that would cause a doctor to try just about anything to stop a family's suffering and find a cure. Medicine and research were part and parcel then. Donald Thomas cared for the first child to go into remission with Leukemia. At the Brigham, one long block from here, he cared for the first kidney transplant, patient of his colleague Joseph Murray. In 1990, the two of them won the Nobel Prize for medicine. Another lab at the Brigham got Thomas interested in growth factors. In fall 2005, a shot of growth factors failed to get a response from my daughter's dead marrow. Eight months later, another shot of growth factors is what kick-started her new marrow and got us out of the hospital. So Donald Thomas moved his lab from here to Cooperstown where he studied radiations effect on beagles at Bassett Hospital. For the record, Bassett was named for a philanthropist, not a hound. Then in the 60s, Thomas moved to Seattle where decades later, my daughter got a second chance. Not long ago, I met a retired pediatrician at a Center for Bioethics event. He was curious about my family's experience. He said he'd been a neighbor of Sydney Farber and Newton. When I told him we had left Boston to have the transplant done in Seattle, he walked away in mid-sentence. I had offended him. I didn't have a chance to explain how collaborative Boston and Seattle were. And it was a remarkable collaboration. It still is. So why would my family leave the extraordinary resources of Boston children's and Dana Farber about a mile from our home for Seattle? The long answer is in bloodlines. The short answer is so we could participate in a phase III clinical trial specific to severe aplastic anemia that would use significantly less toxic means to prepare my daughter for her numero. Boston was on deck to join this multi-center study but wasn't ready to begin when we needed it. It might sound grandiose to say my daughter's treatment came in the midst of a paradigm shift, but it definitely came amid a reimagining of the standard of care for aplastic anemia and at a time when studies of disease involving stem cells became out of date almost in real time. Our daughter's emotional well-being was a big concern for my wife and I and that favored not leaving Boston where we had family and extended support community. Many of them are here today. My wife and I believed our daughter's life might be saved in either place but in balancing benefit and harm we became convinced that less toxic conditioning might save more of her life. Before getting on the plane west we agreed that our decision was the right one and we accepted that we might be wrong. So far, so good. Our daughter is cured, healthy and about to leave for college. Back to Eloise Giblett. The Elo Antigen is named for her. She's among that generation of medical scientists for whom antigen came to mean something. Elo and her colleagues figured out tissue typing and the role that it plays in a body's acceptance of a stranger's marrow. Transplant had only worked with identical twins before tissue typing began to be understood. Mice and beagles bred for the purpose were crucial to figuring this out. My daughter participated in a phase three study to find the minimal amount of the chemo-drug cyclophosphamide necessary for conditioning but we'd really gone to Seattle to keep the total body irradiation low. In retrospect, our decision was very much a weighing of benefit and harm within our family. There was plenty of each whether we left for Seattle or stayed in Boston. It was ultimately an informed guess, a leap of faith really. The bioethicists debate the distinction between clinical care and research and whether the distinction is still worth making. They were essentially one and the same in the early days of bone marrow transplantation and to some degree it was ethicists who made the distinction important in the response to abuses such as Tuskegee. By the time of my daughter's transplant, medicine and research were cautiously coming back together in the uneasy alliance known as translational science. Now here we are hearing what ought to be done is for bioethics to get out of the way of countless cures just waiting to be found. I'm all for better and faster cures but I think Stephen Pinker assumes too much of a place for potential abuses in research and maybe he takes trust for granted. That's a mistake of privilege. A year or so ago I watched a webcast of the Institute of Medicine Workshop on informed consent and health literacy. A physician from UC San Francisco named Alicia Fernandez said something remarkable. She said most of her medical students did not know about the Tuskegee syphilis experiments. That stunned me. You can become a doctor and not know about Tuskegee. Then Dr. Fernandez added, but my patients know about Tuskegee. Her patients know. So that disconnect between physicians and patients is what makes this a good time I think for the bioethics dialogue to engage the patient, family and extended community which is as necessary as it is problematic. Some of us being card-carrying woolly thinkers. I'm one of the five community members of the Children's Hospital Ethics Advisory Committee and it's impressive how children's invites and welcomes perspectives from outside the institution. It's a very good model. Also intriguing to me is the Patient-Centered Outcomes Research Initiative. I'm really just getting started and work on this. I don't know a lot about it, but I'm eager to begin working earnest on it in the spring. In my daughter's care, I don't distinguish the Phase III clinical trial from standard treatment. In my mind, they are essentially one and the same, one being an improvement on the other. But it matters to me to remember that the field of bioethics itself emerged during the era in which bone marrow transplant was developed. Donald Thomas was putting his Seattle team together when Henry Beecher, the Harvard anesthesiologist, wrote what's considered the single most influential paper ever written about experimentation involving human subjects. There were no institutional review boards in the early years of transplant science. No presidential commission, no Belmont report, mostly philosophical debates over semantics. Balancing benefit and harm was done mainly by physicians. We know from events that led to the first president's commission that oversight was sorely lacking. There was no bioethics to get out of the way. But back to Dr. Giblett. After I read her obituary and learned of her connection to Donald Thomas' Nobel Prize-winning work on bone marrow transplantation, I emailed a hematologist friend in Seattle to ask if he had known her. He had, and he sent me the email address of her lone survivor. So I wrote a short note and said who I was and that my daughter had been cured of bone marrow transplant. And I said thanks. She wrote back, thanks for your email. Thanks for your email. Elo used to tell me when she first worked on research around the possibility of bone marrow transplants, people would pick at the hutch and say they were experimenting on and killing children. Seeing the other great scientists at the hutch persevered. And I'm proud that she was my aunt. I grew up going to the blood center with her on Saturdays and watching her work. She was an amazing woman. That also stunned me. The idea that a woman directly connected to my daughter's cure had been considered a baby killer by some. But into the mid-1960s, transplant results were such painful failures that even Thomas stopped trying. The only early transplants that worked involved perfectly matched siblings. Typing for the human leukocyte antigen was not understood. But by 1967, when Thomas resumed his clinical work in Seattle, he had made important advances with his Cooperstown dogs. He had identified genetic markers on white blood cells, markers of histocompatibility that permitted close matching of donor and recipient. And he observed consistently successful graphs among his beagles. According to Jerome Groupman, prominent scientists were harsh critics of Donald Thomas. Even as he began assembling his clinical and research team in Seattle, Groupman says that what made Thomas unique was his persistence. So at this point, I probably don't need to say I'm a little bit obsessed with the scientific development of knowledge that made it possible for my daughter to be cured of a disease when I was her age. And that did kill that Seattle woman's sons. And I'm not quite sure what to make of the fact people directly responsible for creating the cure were considered baby killers by some. Were they all cranks? Were they right? I'm pretty sure the Seattle woman was not among them. So, back to the cute animal photos. So this is my dog, Hutch. We named her after the place it developed the cure, which is also the place she spent her first three years, known by four numbers stamped inside her ear. She was mostly beagle with a little basset. She died last year of cancer, but we had eight good years with her. The digits in her ear grew quite faint over time. She was a research animal. Indeed, she received almost the identical transplant conditioning protocol as my daughter. Then Hutch got her own stem cells back. And about six months later, came home with us. One afternoon, Hutch jumped up on the window seat that she wasn't supposed to be on and rested her head on a Jimmy fund hat. I let her get away with that so I could take this picture. I let her get away with a lot. Watching my dog grow up watching my daughter grow up with that dog was like seeing a miracle alongside a metaphor. At the dog park, people would say, oh, she's a rescue. And I'd say, no, no, no, I'm the rescue. Now, at meetings of the Ethics Advisory Committee at Children's Hospital, every time a case comes up concerning parents and physicians at odds over the best interests of a child, I'm yanked back to our decision to leave Boston for Seattle. I'd like to think I've contributed something by writing this book, but in truth, my daughter could probably have an experience and has her own appreciation of what took place to save her life. She did not need my book to do that. I needed to write it just to make some sense of an experience that as much magical realism as science to me, but I did not need to publish it and I waited until my daughter was older and it felt okay or more okay than not. Another balance of benefit and harm. In truth, whether or not to publish would make me the most ethically loaded question in my story. Thank you. I'll get that. Thank you, Paul. As you can see, he's a very, very thoughtful writer and speaker. If Martha were here, she would tell you that this is a pathography that is a memoir that describes, is the experience of a patient or a person connected to a patient of their illness. How many of you have read the book? And Paul has sort of started us down the path of answering one of the questions that Martha would have asked. That is, what does this story do for the writer? There are actually books written about this. One of the most important is a book by Arthur Frank called The Wounded Storyteller. But there are a number of others. Another question though is to ask, what does this story do for the reader? Because Paul didn't write this just for his own therapy. He wrote this because he had a purpose in sharing the story. And your purpose in reading it and his purpose in writing it might not match, but it might be interesting to explore that. So I guess by way of following up on this question about what moral stories or pathographies do for people who write them, and the questions that Paul started to pose at the end of his talk about the ethical considerations in writing about a family member. Those of you who read the book know that he worried about this from the beginning and took care not to write things he and Jody put on care page, for example, that J didn't want on there. And also took that into account as he wrote bloodlines. That's one of the questions that Martha talks about in reviewing a couple of books about pathographies. And so I put a copy of that article up here for any of you who want to pick it up. So in the meantime, let's see if we can start off this conversation from the question of what work does this pathography do for the reader? Those of you who have read it, what did you learn by if you want to start somewhere else, you may. Lynn? Well, in such an eloquent way showed both how much context matters because time, I mean you gave the structure within a time continuum but also severity continuum and a person, a character continuum. So it allowed for in a way the sensitivity that there are so many perspectives each one changed by the other person or the time frame and that there is the patience, the families, the communities and the healthcare team and at any one given moment in time there's usually discrepancy whether it's an ethical discrepancy or medical scientific discrepancy and to me that was very profound the way you sort of interwoven all the characters and time things. And describe the discrepancy between people giving you advice and how hard it is for families to hear. It's so different to look back on that retrospectively than in the moment I mean it's such chaos in the moment, what are you even saying you're learning language it's crazy. So it's very in fact it's interesting to come back and revisit the story I wrote several years ago now because I'm just I'm a different person things have totally changed and my perspective on the story is different I'd write a different book now but your description of the new normal was pretty interesting I don't know how many of you have had children in the hospital but that really rang true to me where everything is turned around and suddenly you have to cope with the love of your world that you never expected and the language is new and the people are new I remember we even asked a question I don't remember it was Jody or I but something just really awful happened and one of us asked the nurse is this normal it was like hello that was just that's the way the mind was working possibilities those of you in the front speak up the book made it real made it a very it brought to life what it's like to be a parent terrified for their child you also read in an awful lot of information about the people who's work in science labs and medical labs and the animals that contribute their lives and their well-being to that had in the run up to the fact that your daughter was able to survive a lethal, a formerly lethal disease and in your presentation today you really sharpened that question about how many people and how many animals and how much tension the researchers absorb in order to get, not always to the good outcome of a successful treatment I remember, I'm sure Bob remembers the days of children who were having bone marrow transplants and who had graft versus host disease and were miserable and more than half of them died and I remember the nurses in the ICU developing this quasi-therapy for them that enabled a child to pick a nurse who would have to drink the bowel prep that they had to drink every day as a way of getting through drinking that stuff and a lot of children who would have died but still he has asked this question even today about how much is it justifiable to do in the hope of getting to a good ending which this turned out to be but that's why I've saved that phone message for the longest time, I love that phone I've tried actually to track her down with not any success but that just takes me back to that kind of scenario the parent is the one who's saying do something, it's like figure this out you know, damn figure this out, this is awful and so there's almost an aspect of ownership that I think the patient, the family has to take on about this, what are you asking us to do what are you justifying and those of you in research ethics this blurring of what's the word I want level three research or the clinical trials clinical trials and treatment should we blur those lines more or less I think it highlights the value and the importance of informed consent and that it's not a document it's not something you sign and get over with it's really a process of communication and as you say beautifully communication is difficult and I think that those of us who are in this field feel compelled to make that informed consent document even though it's just one of the components of the informed consent process the in layman's language my sort of metric is always he wouldn't understand this he's a business he's a bright guy and if he wouldn't understand it then it's wrong I think there's also something about engaging families with the understanding that they're oftentimes they're trying to in the heat of the moment they're trying to give you the answer that you want to hear so they're not really informed consent is I think you can sometimes be on the planet and you're still not going to be understood with certain people because they're just you know it's just too much to absorb so I'm not sure what to do with that but so Bob you want to follow up on that? no that's okay one of the things that struck me in listening to you Paul was the interplay between emotional detachment and emotional engagement particularly when I was seeing some of those comments about the researchers you know I think whether you're doing research or doing critical care with critically ill patients there's maybe a few people that are able to keep those in balance but I think most of us are oscillating between the two and that for much of our day or maybe you know much of our lives there's an emotional detachment to do the work which is then at times I think maybe in private times balanced with emotional engagement but I wonder when you know somebody looks at a woman like that and says you know a baby killer you know you can look like you're being pretty cruel in the moment and that you know you can look like you don't care and of course people do but it's a way of engaging with the world that enables one to keep moving forward from day to day and I wondered maybe what your experience was in terms of working with the clinicians and the researchers that you did about how they managed those sort of two ways of being in their work God the whole range and Joe you can feel free to step in here if you'd like because you experienced it as much as me and I was actually thinking of an example of we had this attending who took care of Gerald the whole way through she was wonderful and she's very compassionate very very knowledgeable we respected her and everything but I remember we had a healing service at our church the church was a big part of what supported us and I remember we had the healing service we had lots of neighbors and friends and family and after the service we were telling Jennifer about it and she said oh why didn't you invite me and I was like oh I did that separation thing like just what you're talking about she was compassionate wonderful but I wonder about these systems and how they're kept so separate that I didn't think of her as somebody to fold into my church to be of course embarrassed that we didn't invite her but it says something about the separation and how tricky that is it's interesting you mention that because just at the consortium a week ago or so Michael Balboni was talking about like those numbers almost like 90% of physicians and nurses can't engage the patient or family on issues of this nature or or don't so there's a wall there that doesn't I think from both directions maybe because clearly Dr. Wangbo never said don't get into that with me but we didn't get into that with her you also had the experience that those of you who haven't read the book might not fully be wondering about some clinicians who were very open with you about the difference between what was offered at Dana Faber Cancer Institute in Boston Children's and what was possible at Seattle Children's and I don't know what the political costs might be for someone who does that but I think it's not always routine for clinicians to draw families in to a consideration and it's partly because you already had family members doing some of that research and work and gave you a standing place from which to ask questions about other ways of doing bone marrow transplants and so my question is about how you developed a relationship that enabled your caregivers to share with you information that usually only insiders know about when we were in the process when we were trying to get to the point where we knew it was going to be a bone marrow transplant was necessary and we were in Boston and starting to gather that information I think there was kind of a protective area where among the farber physicians there's only so far they would go in terms of saying what else is out there so there was a certain and some people negotiated that better than others some didn't negotiate it well at all and others said you know you really need to we don't recommend you go anywhere else but you need to kind of know what else is being done because there's a whole range of approaches going on right now we believe in this one and here's why but so there were people who could physicians who could kind of go there and at least kind of dance along that kind of tricky political line and there were others who just would be very defensive about it very very defensive about it but stepping once what was remarkable was you know Jody's stepmother Lucy and Jody really engaged this early on getting a phone and exchanging information with people but it was really striking to me over time how I could get somebody you know the head of transplant at Duke the head of transplant at Oakland Children's on the phone they can give me a lot of time and they didn't know me and they didn't know enough the diagnosis and everything you know they knew A-plastic anemia it needs transplant the way they would engage questions and help was really extraordinary so once you it was like almost but you had to cross that sort of political wall of kind of what's if it's okay to go there or not you know does that make sense? it does and I don't think that's a common experience I think it has at least partly our own abilities to connect with people in a way that enabled them and we were really coming from a place of privilege too I mean we had a lot of resources of all kinds people to ask knew the questions to ask knew where to go with the questions and so I mean if I had been a single parent dealing with this it would have been a very very different story things would have been taken care of here my daughter would probably have had her life saved a more toxic treatment and maybe would have never known there was anything different sorry I haven't read your book yet but I just had a question you don't have to apologize there's a lot of you but to go back to the Martha Montella question by the way of Christina the reader versus the writer and what the story does I was wondering if your daughter has read the book how what was her reception to your reflection on her illness and where was their reconciliation, where were the discrepancies and how did she receive it overall boy that's a great question and I'll recruit Jody on this one too but it's been a process I wrote this book a few years ago the first draft of it and she knew I was doing this and we'd talk about it Jody, deal with it too much I was doing this for my own purposes and she didn't the thing that my wife and I give my wife a lot of credit for this is creating an environment when my daughter was really really sick that kind of normalized it in a way so she never had the experience of feeling like she'd been yanked out of her life and things would get back to normal some time but right now is awful I think and this was really my wife's doing creating an environment of where this is my life now until the next one comes so and as a result this time is kind of a blip on the timeline for my daughter this doesn't define her life the way it does my wife and I so I think we were successful in that regard so we don't actually my daughter and I don't talk about the book a lot we come back and forth through it over time in fact I didn't give her a copy I gave her own copy it has a totally different title maybe two years ago and I know she's read some of it she's never told me I've read all of it but she said last week she had an assignment for an English class so she asked me if she could interview me and I didn't know what it was about and I said sure so she sets up her iPad and records this interview she starts asking me a series of questions about why I wrote the book and I went into it and she sat there then like three days later she performed in her English class as me talking about why I wrote the book so I didn't see it I didn't see it and I don't think it was recorded so I just know it happened so I don't even know what to make of that but oh yeah absolutely to sit there with her and be interviewed with her by her about this it was great it was an amazing conversation it was a work in progress she processes things by doing so I think psychologist I can't help myself I mean I think part of the way she was processing you doing this writing a book is by doing it herself in a way she had a choice she didn't have to interview Paul and that reminds me of when she was younger and she was sick and she was seven and one of the ways she dealt with it is we amassed this whole box of medical supplies without needles and right after a blood transfusion or an IV or a poke she would go and do it okay Lucy, grandma, Christy let me have your arm we're going to do this now she was repeating and reworking it so I think that is one way that she dealt with it so there was less left over for her to process switches just like what Paul said it's really more of a flip in her life you know who knows she's only 18 what she really wrestled with it was recently whether she should make it an essay in her college application and she did and then she tore it up and then she was convinced that she ought to again and so she did so she actually wrote an extraordinary essay once in a family when I was 18 I was not writing like that I did read the book Paul hi Christine hi as a nurse educator I read the book and I was waiting for nursing waiting for nurses and my memory of this now it's a couple of years ago that I read the book was that some of your favorite nurses had a grit about them of let's get this done kind of forward thinking and cared for both parents as well as child which I thought was interesting I've got a couple of copies of your book a year ago I was training a graduate student oh used to be hemorrhagic children that's great I've got a great book for you to read Paul is a student of my grad student who seemed a little locked down and cautious and I thought Paul's book we'll talk about it we'll talk about how she's doing with people that she's seeing now whose big problem is strep throat or something and she came back I don't know why I couldn't keep up doing it I don't know where I could have gone to grab what I needed as a safety net for myself and to me that's important to hear as someone involved in nurse education or people who are here in medical education to try to figure that out with your best people on the floor who's watching out for them and how do you keep them knowing so she had left because the work in Emonk was yeah it just got to her even in this era listen there's always going to be another health problem that we have at Concord but you know it was just that Bermat thing and I think it's something that we have what did you think the book would do for its readers you know I never thought that way about the book this was a very very indulgent book I wrote it for me I edited it down to its current length just to make it a more readable book for others but in fact I wasn't sure I was I self published the book at one point just because you know it's like my daughter doesn't need to go through this again or have this whole thing relived or in this way but it was some friends who had read it and they saw value so they you know I became convinced that there was something there but for me to say I don't know maybe it just feels too self-serving but it's for me to answer that is I wanted to replay it and so I could kind of make some sense of it because you know like I said the story is as much magical realism as it is science you know I mean sitting there that night I mean it was Easter week in 2006 like eleven thirty at night on the transplant ward in Seattle and you know in comes this pizza delivery guy he comes from the south you know in a cooler and the doctor is transplant physician is barely even there he's there and he's paying attention it's all about the nurses the nurses are taking care of the whole thing and they hook it up and there's this bag of stem cells that they hook up to my daughter and those things you know when I think of transplant I think of surgery you know and it's like oh here's this we're going to take this liver from here they hang it up and these things just go inside and they know where to go and it's like wow what's up with that and so it's I don't even know how to explain that it's just extraordinary so that sort of thing is what I wanted to try to look at with the book and kind of go what the hell just happened you know my daughter's still here it's like what is this so I'm writing to Paul was that helpful to both be able to capture that affective experience but in addition to that get some distance yes yes and kind of the it was helpful to write it and it was helpful to edit it a number of times myself and move things around and cut things and yeah it was very helpful just psychologically you know I mean it was therapy for me in so many ways I mean I didn't want to this kind of experience you know it's almost like you have a choice of a parent it's like you can kind of look at it clearly and try to find a way forward or you can just become neurotic as a parent and whatever it's like I love this quote from that I used it in my book the film Finding Nemo you know where it was like the Marlon is the father and he's like Albert Brooks totally neurotic you know he's lost his kid and he can't find him and he's sitting around and Ellen DeGeneres is Dory and she's like total dits you know and they're going around looking at the kids and Marlon says you know if I find him I'll never let anything happen to him ever again and Dory says well that wouldn't be much fun for the little guy it's like oh okay you know that has stayed with me you know it's like I could be very much lost in this so writing this story really helped me to just kind of let her allow her to just live her life and not be defined by what took place here you were the person who had to say no over and over again I assume you did too but she was immune to pass and it was absolutely critical to have someone that was going to cause her a problem to come near her so you could have been very protective yeah and it was I mean it's not like I'm saying you know but I've hung onto some of it I guess I hope but you know this was a boy in the bubble story except there's no bubble anymore and it's kind of how do you act and you know when everything's contagious and everything and even yourself put you at risk so speaking of that you experienced a difference in cultures between Boston Children's and all the masks and the Purell and the so forth and Seattle Children's where before Geraldine had begun to trust this new environment and these new healthcare providers were really different about how protected she was supposed to be from all these germy people right and here and we really became we experienced this when we were out patients but still coming to the cat CR I can't even remember what that stands for but for you know for blood work and infusions and whatnot and we'd have to run through the lobby you know with her mask on here it was all about protecting her with the mask and Purell and everything from others and we got to Seattle and you can wear a mask if you want if it makes you feel more comfortable but only do it if you got a cold because we don't want you to infect the others so it was the total reverse and that was I'm not sure which is the better way but it was just strange what that was was something I did not know before is how different things are done from here to here to Seattle to New York to Boston it's like total different approaches you know you kind of think that medicine is medicine they all do it the same way and some do it better than others but it's just all the same but that's just not true and that's kind of a that was an eye opener I'm not sure it should be any different I'm glad that Seattle was sort of pushing the envelope in a way and kind of doing this they called me a transplant they did more patients so they knew more about aplastic anemia which is a very rare disease thank goodness it was a place that really specialized in that you know hey Charlotte hey Paul I too read your book and loved it and I hope that regimes the fact that I had to get here late so forgive me if you've already addressed this question but I'd love to ask if you haven't one of the fascinating parts of the book was the relationship between the stem cell donor and your family and this is somebody who identified herself invited you to your medical school graduation contributed to the bloodline scene and you do wonderful things about that relationship I wondered if you know as you look back and as it's been more years relating or not relating to that person if you would reflect on the importance of knowing the person or not the possible pitfalls you know and anything else about that relationship that you would share yeah well I love knowing her and I'll let Jody address this too or do you want to I mean I love knowing this woman we don't see much of her we are connected on Facebook and she's a quilter so I see a very prolific quilter she's making all the time photos of them so I don't know and I know the year or more where we didn't know her who she was who were very very curious but to know what it would be like not to know her I'm not sure I could reflect on that but I love knowing that there was this person who did not know anything about us there was this 8 year old boss didn't even know who we were in Boston there was this 8 year old with aplastic anemia who needed transplant and that was enough for this person to say okay I'll go let them shove a needle in my hip and take marrow and sure it's like wow that's like extraordinary I remember not knowing not knowing why we had to wait a year for bone marrow registry and you're not supposed to identify yourself for a year I didn't understand that and now I get it because I was putting myself in her shoes that if the first transplant had not worked we would be hopeful you know looking to her like can we have another and how that would put her in a horrible position and you know just the ethics of all it didn't dawn on me until much later so you know the anonymity was frustrating she sent us a card when Jay was on the transplant and it had all the identifying information blocked out and we looked like Paul was saying we're trying to figure out who is this person and she did the same thing I sent her a card with like some museum of modern art and she's like oh they must be from New York you know like she's trying to figure out who we were but I'm glad that you know it all worked out obviously but I'm also glad that it was anonymous so if it didn't you know she wouldn't have felt pressured so you know we started a little with gratitude so I wanted to connect that and then what Bob mentioned before about engagement and disengagement and then adding a little component about compartmentalization and the importance of that as well that you know part of what you do as a parent and I should say as someone that's a long friend that my daughter's woven in the book so it's on a couple levels but so the you know as a parent what you get you through oftentimes when you're in that circle is trying to think about not wanting to join the group that doesn't survive that you're engaged with the group that is looking desperately for what he is going to survive and what that's about and so you work hard on that and I think one of the gifts and you have to get through that you have to be able to kind of be able to put things on the shelf regularly so you're not fully disengaged but you can take it down at any time and then you think about it think about your book what I'm very grateful for with your book is that it is a connection between the personal world of the parents and families and the professional world and that it bridges that that oftentimes books are geared either towards just the parents and the families or they're geared just towards the professions and yours really bridges that and I think that's really to me that was the gift that you brought to me thank you we work through a lot of this together so I want to pick up on the you I'm sorry I wanted to pick up on the pinker quote and the sort of willful amnesia that he asks us I think one of the wonderful things about the book is the fairly distressing history of transplant medicine is told in a really depth way you don't realize you've eaten all that broccoli I'm sorry at the end of the book but I'm interested in this idea of you know in the school at the time when the Tuskegee information was actually just breaking and there was a large faction that said you should never even know about this this was so shameful and horribly done it needs to be suppressed it's Voldemort it needs to disappear and or you know the idea that in my profession of child virology the names of doctors who discovered things if they were Nazi fellow travelers have been expunged they were to be passed into the outer darkness I don't understand that but I think that it gets you to the point I mean just in your reflection of pinker sort of saying well we're trustworthy and if we forget all the stories of untrustworthiness we sound great but you did a very good job I think of this tension between the costs and the benefits and the difficulty and the messiness of the story you know I think you will know but you get you know I think you need to have eyes wide open on this you know what was I going to say kind of lost my train here you know if you don't have that history you're also robbed of the opportunity you're grateful for the sacrifices that were made on the path from the children who didn't survive their bone marrow transplants to the dogs who gave their lives and others and you know you started at a point of expanding your gratitude for J survival to include the people who didn't survive and the animals who were sacrificed to get to the point of her survival and if you don't have that information and you don't have that history you're left with is a gratitude that your child survived but not a recognition what it took to get and I think the thing that rubs me funny with what Pinker said is that trust is so important to this whole process I mean we just allowed things to take place with our daughter just trusting this system and they'd be explained to us but we just had this okay if anything this may not work but if anything is going to work this physician these nurses they're going to make it work but there was just this real trust and that's a privilege I think a real profound privilege and not everybody has that and especially if you're on the other end of a if your memory is of Tuskegee and other times how are you supposed to buy into that you know how are you supposed to give your trust to the system even though you need it desperately you know so it's I just wanted to say on that issue my daughter was born with a lot of things wrong with her heart which was not picked up right away so she came in as an emergency and then she was going to have surgery at two weeks for about four or five different things and the night before the surgery my husband asked the doctor what are the statistics on the surgery and he said being honest he said there aren't any we've never done all of these things at once and you know talk about trust I mean what could we do we could either say wait stop you know but then he said but what we've learned is that over the years we've learned that the best chance of survival is to make that heart as close to what it should be as we can as early as we can it's really worth doing this and we think it'll work but I felt like he gave us the whole picture as best as he could it was a very humanizing moment for you know this surgeon to be to us he was and it was important and we were so grateful to him thank you thanks to others others aren't so you know anyone who's gone through the events that you have especially somebody who's written about them I'm sure it gets asked by other people for your advice or let me tell you my story and then they look to you expectantly what insights can you give me how do you think about that when you talk to others what part of your story can be helpful to others obviously it's been helpful to a lot of us but where do you set boundaries around how you share personal advice or insights with others that's a great question because I actually had a conversation two months ago with the young guy at Children's come to town for aplastic anemia needing a transplant and going through some of the issues and was Dr. Wainbow said you might talk to these people and so I did I'm not sure I told him anything that was helpful I think that listening to him was helpful and you know I don't remember what he's there was a couple of things he said that I responded to that I can't even remember to tell you here but more than that I heard what he was going through and kind of shared in that and I think that was more important than anything I told him and in fact I think I probably could have been hurtful to talk when we were through that ten years ago this is what happened put the fear of God in the poor guy so I didn't want to stop on his hope and I didn't want to give him false hope but listening I think was the best thing I could do there well this isn't increasing new strategy and sometimes ethics consults recommend it that the team might consider families who are facing difficult medical ethical choices talking with other family members who've been through it and you sort of point to exactly the pitfalls of you know what does a family member being asked to do that say to someone who's facing a choice where their child's life and well-being is at state and you know we've talked about so do you introduce them only to the ones who had surgery that went well you know a bone marrow transplant that work do you give them one of each do you you know I think you probably need to have a sense of who that person is you're handing off to them you know because I mean if you can help a person in that situation with anything it's sort of do it to get them comfortable with the uncertainty and the ambiguity of it and you can do everything right and your kid can die or you can things can go a lot of things went wrong in my daughter's treatment and she survives you'd think nothing ever happened so there's like but sitting with that kind of ambiguity isn't easy but I think maybe talking to someone and listening to them maybe you can make some progress with that but there's no magic thing to say to somebody in a situation like that you know I mean remember our minister came by the church one time came by the the hospital 7 West and it was like I don't need this conversation I just don't need this conversation right now you know and he knew enough to turn out and go away but but you know there's nothing in the world he could have said but don't say if it's a parent you know who's going to tell you your kid's gone to a better place don't cut that person off right away Well you and Steve kind of had each other we did but there are I don't know if there have been conversations in the ethics committee while Paul has been on it about that kind of recommendation but ethics consult teams do agonize a little bit sometimes about this particularly around advanced healthcare center cases but some others too and it is an end of one or if you give them the names or you introduce them to more than one parent it's still only a couple and you know it's hard to tell how beneficial they are Is it going to do more harm than good? Yeah We've left it vague at times at Columbia of saying particularly in the creative setting saying there's so much uncertainty where as healthcare providers as uncertain as you are and you recognize and your attention because of that you may want to speak to families not going on the internet but actually speaking of families who have been in similar situations and I don't recall us ever saying here's a person to speak with for that very reason because you just have no idea regardless of what the end result is of success or not the process that they went through they're all different You could just comment on them and then turn to something from our ethics committee that Paul just contributed to in a big way based on this look but quickly on that question I feel that if you look at like the shared decision making projects coming out of Dartmouth and other places when they do have they have people on videos talking about their experience and they try to have someone who chose this side and is happy about it and one who isn't so happy someone who took the other alternative and is happy and is not happy who can figure you you want to vet your people and you want to balance it I don't know how feasible that is in a separate hospital setting but it's worth I think your question is really important because people can have a huge influence and Paul was more modest about the influence he was having he was listening more than talking but yeah it's an important question what I wanted to mention is a little bit earlier I think it was your question Christine John with Paul the issue of people at Children's Hospital telling him about what was going on in Seattle even though that wasn't being offered at children's or recommended and we were just in our last ethics community meeting talking about whether there's actually an obligation for clinicians to inform people even if you're then going to say we don't offer it here's why we're not recommending it but a reputable place is doing this and in fact and it turned out children's was close to beginning to offer it is there perhaps an ethical obligation to inform and I would say David would agree our committee felt pretty strongly that there was an obligation in a situation like that similar to the argument that Chris Puder makes in that great paper where he talks about the difference between informing a patient offering the treatment and recommending the treatment from among the great options that you're offering but I think Paul's story really illustrated for people the importance of that right that's so interesting and is there a way what Children's Hospitals Ethics Committee thinks informs all the clinicians on the front line who are making decisions about enrolling families in phase 3 trials and considering alternative treatments know about your sense of their obligation so my sense of that my closest friend in medical school is from Oklahoma and he said you know when we need to change the direction of the stampede we don't stand in front of it and yell stop cows did you all hear that no sorry my closest friend in medical school was from Oklahoma and he said you know back home David when we have a stampede we don't stand in front of it and yell stop cows you just get next to it and you just kind of lean and if you do that long enough they turn I think that's our model that's awesome along the land there's the Department of Public Health has regulatory changes that are going into effect actually really shortly that will require it will require all clinicians for all of us to be to talk with patients about all of their options if they are facing anything that is a life threatening illness this includes chronic illnesses it includes the criteria basically if you would not be surprised if the person were to not survive during the next year you're then obligated to give alternatives to whatever care you are offering including palliative care and hospice all the various ways so it's a big question to me how it gets operationalized you know that's in that's going in I had one other thought on Beck and Bob's question one of the more for me it might have been the most important conversation in the whole process was with Akiko Shimamura early on and where she she was explaining just kind of what we were facing and the kind of the the disease was idiopathic they never did know what caused it which was I could not wrap my head around that but she just eloquently explained you know there's a lot that I know and then there's a lot that I don't know but I know it's there and then there's this other pile there's like all this unknown unknown and I'd rather remember Akiko saying Donald Rumsfeld I think but it was really an important kind of just to hear that you know all of it she did not know and it was like okay we're kind of in this adventure together then I guess I think another ethical dilemma is your insurance will cover this not that we're not in that other state and that must be very difficult or someone who's a scientist and a surgeon well it is unfortunately 2 o'clock I really want to thank you Paul thank you in a way what you are doing is a little bit like what could perhaps be called translation bioethics in the sense that we spend a lot of time and the students will attest to this for the foundations course the academic and theoretical components of bioethics that you must grasp in order to be prepared to do the kind of work that you will eventually be doing but it is very easy to lose track of your feelings and your perceptions and the sense of being the parent or the patient or the family member and in a way you have by bloodlines and the work that you're doing with the community ethics committee and catalysts serving in a way that bridging so that people see it's not all about the enlightenment and theoretical bioethics and philosophy alone but it's also about those moral intuitions and the human behavior of grappling with what life hands us about which we each have to make choices and some of them with very very high stakes so we want to thank you I guess I have the answer to the question why did you write the book, well this so thanks thank you