 My name is Samir Vorum and in the final year of my pediatric residency here at the University of Chicago I'd like to thank Dr. Bob Dom for giving me this opportunity as our director of pediatric Grand Rounds to welcome all of you today Thursdays between 12 and 1 p.m. in Billings Auditorium is traditionally a time for pediatric Grand Rounds a Discussion on the latest innovations of the care and treatment of children Today the Department of Pediatrics in collaboration with our co-sponsors and partners the McLean Center for Clinical Medical Ethics the University of Chicago Institute of Politics and the Bucksbaum Institute for Clinical Excellence has a unique opportunity to provide you with a talk by one of the world's leading voices in the current and future course of health and medicine Today I'd like to welcome all faculty staff students and members of the Chicago community on a talk about being mortal medicine and what matters in the end our Distinguished speaker will be introduced today by our own distinguished professor of medicine and surgery executive director of the Bucksbaum Institute for Clinical Excellence and Director of the McLean Center for Clinical Ethics Mark Siegler. Thank you and welcome Samir, thank you so much On behalf of the Department of Pediatrics, I want to thank Samir and Bob Dom standing up And also the Institute of Politics Steve Edwards is here with us today at the Bucksbaum Institute for Clinical Excellence Mrs. K. Bucksbaum is able to join us and the McLean Center for Clinical Medical Ethics. I welcome you all to today's lecture It's a pleasure for me to introduce our speaker Dr. Rital Gawande Dr. Gawande did his undergraduate work at Stanford and then attended Oxford University as a Rhodes scholar He received both his medical degree and his master's in public health from Harvard Dr. Gawande is a search and writer and public health researcher He practices general and endocrine surgery at Brigham and women's Hospital in Boston He's a professor of surgery the Harvard Medical School and a professor of health policy in the Harvard School of Public Health Since 1998 Dr. Gawande has been a staff writer for the New Yorker magazine He has written three best-selling books Complications second book better and most recent book before this one the checklist Manifesto Dr. Gawande has won two national magazine awards a MacArthur Fellowship and has been named one of the world's hundred most influential thinkers but by both Thai magazine and the journal foreign policy Dr. Gawande is widely known as an expert on reducing error improving safety and increasing efficiency in modern surgery and medicine Dr. Gawande has now turned his focus to end-of-life issues I especially enjoyed his recollections from his medical student days of reading the death of Ivan Illich recounted in the new book I told Dr. Gawande. We are still teaching that great novella to our students Today, Dr. Gawande will speak about his book being mortal Medicine and what matters in the end. Please join me in giving a warm welcome to Dr. Atel Gawande Thank you all for coming. Thank you for coming from so many different places We scavenged a pediatric grand rounds and brought people in from the Institute of Politics and and all over and I'm really grateful for all of you Who would make time in your day to talk about a hard subject? You know part of what drove me to take on this particular subject was the sense I had as we went as I went along through my training and through Residency and also as I was writing about some of these experiences that I wasn't very good at dealing with problems of mortality I opened the book by saying I learned about a lot in medical school Mortality wasn't one of them. I think our perspective on it and you know to the extent I I had some perception about what Mortality might entail it came actually in a seminar where we confronted the death of island Ivan Illich But for the most part, I think we saw our jobs as learning how to fix people. That's what I was excited about That's why I ultimately loved surgery this idea that you could go into an operating room Take care of a problem and leave and have made somebody better for it. It made you feel tremendously competent we didn't feel terribly competent when we couldn't fix people however and What I found in practice was that I often had people who Had many problems we couldn't fix There were Patients who were terminally ill there were people with chronic illness that just weren't getting better There were people with aging and frailty that were just They were continuing to progress onward whatever I might have to offer and I didn't find I was especially good at dealing with these situations any Clinician ends up finding the family come to you for advice and those were especially in the moments that I found very hard In my second book better. I wrote about a pediatric case involving a family member my wife's cousin Name Callie was 12 years old and she developed a Hodgkin's lymphoma With a large mass that grown in her chest and she received successful treatment at a place just like this with radiation and chemotherapy Making the disease go away But a few months later it didn't turn out to be successful after all that the cancer came back and grew back Even bigger than it had started Hodgkin's lymphoma is highly Curable for a large percentage of kids But when it comes back The prognosis is much worse They tried one round of chemotherapy then another round she had complications She ended up in the hospital for a few months chest tubes in both sides catheter to drain fluid from her belly In the hospital day in day out getting therapies and her father and mother called Trying to figure out what they should do They had been told that now What they could consider at this point was an experimental therapy with a bone marrow transplant and high-dose chemotherapy That you know there wasn't much information about whether it would do good or not and would involve a pretty tough course for Callie and They wanted to know whether that was something they should do or should not do and since the doctor she was speaking to Gave them plenty of information the risks the benefits the pros the cons But couldn't offer guidance All they could say is so what do you want to do? They called me up And I didn't have Anything better to offer Then what heard their doctors had said you know The only thing I could say to them was it was okay If you decided not to go for it Decided to take her home they sort of said thanks and They were left on their own with this decision this most heartbreaking of decisions and A week later to send it around a note to the family that they were taking Callie home And about two weeks after that it was a couple days after Easter. They said that She'd died I Had puzzled over the years about whether there was any way to think and do better in these circumstances I'm a cancer surgeon. I ought to know how to walk my way through these decisions more effectively and And what I decided to do was start going around and talking to people who made it their expertise to do this I Ended up in addition to interviewing a couple hundred patients and family members about their experiences with aging and frailty and serious illness also following scores of different kinds of clinicians Palliative care physicians geriatricians ICU doctors oncologists nursing home workers hospice aids and out of that came a picture of you know, possibly a different way of Thinking about what our task is in that moment And so then I got another call Not unlike that one Again, I wasn't the doctor. It was the daughter my daughter the hunters Piano teacher and her husband calling Martin her husband said pegs in the hospital again Peg Batchelder was a neighbor. She was in her early sixties and I knew she had had a cancer before She'd explained it to me. It was a rare pelvic sarcoma Involving the muscle of her pelvis this soft tissue cancer that doesn't arise very often, but it's an aggressive cancer she underwent and Radical operation that removed a third of her pelvis and replaced it with metal then underwent chemotherapy and radiation she had multiple complications Put her in the hospital for many weeks at one point along the way She lost all of her students and her teaching Was her year in hell? She said But she came through it Her prognosis was good. There was no evidence of disease. She resumed teaching. She was a very popular Teacher she had this lovely gentle way about her while being a stickler for you know practicing and getting it done my daughter happily joined up with teaching after her treatment was over and And for three years Peg did great But then she developed a leukemia like malignancy that was a side effect of her chemotherapy Milo dysplastic syndrome and With MDS she needed to undergo a new kind of chemotherapy She insisted that she still be able to keep teaching and so she did she taught all the way through her treatment Sometimes we get a call that Hunter's lesson needed to be moved to this date or that date because of her appointments But but that's the way it went until for a couple straight weeks her appointments were completely canceled and That was when Martin called. He was calling from the hospital room where she was he put her on speakerphone and She had this very quiet voice Long pauses between sentences and what she explained was that the treatment she was receiving Wasn't working anymore Her blood counts continued to fall as they do with Leukemia like malignancy with the falling blood counts. She began to develop fevers and an infection The infection led to they're wanting to do a CT scan to see where the source might be The CT scan showed her original cancer had come back in her pelvis and spread through her liver And now she was asking me the same question that Callie's father had asked me What should she do? What strikes me is that this is the question that is the source of a national debate What do we all think she should do? should she Push for whatever Opportunity there might be You know, there was no conventional chemotherapy. I asked her what were the doctors saying that she could do and they said she said not much They were giving her blood transfusions They were giving her Steroids for the tumor fevers pain medication But they said there was no conventional chemotherapy option And so what she was trying to think through is does she push for an experimental therapy? Should she push for you know, there's got to be something that you can do and there's always something we can do There's always something that we can offer So should she try for that? Or should she as they offered? Sign up for hospice and give up They said we can keep you comfortable and that option made her angry Speak just be comfortable before now what? struck me was that meeting with the Hospice workers meeting with the different kinds of people who Took care of folks along the way That they had certain lessons that I had not appreciated had not understood and one of the fundamental ones was that We have failed to recognize in medicine in society That people have priorities besides just living longer that they have certain Ames and goals For example For some people it's really important that we not sacrifice their cognitive capabilities in the course of care Or that they want to be home More than they want to be in the hospital For other people that you know, they might be willing to go through it all Whatever we might throw at them in order to get to a wedding six months from now Or that they just want to be able to walk their dog And that's really important to them My father was diagnosed in the course of researching this book with a brain tumor in his brain stem and in his spinal cord and We didn't know when But we knew it would progress to cause him to become quadriplegic and then die It was not a curable tumor very slow-growing It raised all kinds of questions You know took about four years to take his life So when he was diagnosed was he dying were there aims he could pursue along the way Even though it was not curable and How do we fit in the kinds of options that he had in front of him surgery? Radiation therapy nine different chemotherapy options all with sort of unclear With with a set of known risks and unclear benefits Though there were definitely some that you know were held that that could be held out before us what the people who are really good at these conversations helped elicit and helped me understand is that That understanding people's priorities can help guide what you're actually fighting for And that's where the second lesson came in Which is that The evidence indicates and there's a very technically complex trials to show this That the most effective and reliable way to find out what people's priorities are is to ask and We don't ask less than a third of patients For example in one study of seven different cancer centers Less than a third of patients who were stage four on Average in that study they turned out to have only four months to live on average Only third ended up having a conversation with their physicians about their priorities and goals For the end of their life Or for if their health began to worsen And that group had strikingly different results They were much less likely to die in the hospital less likely to die in the ICU They were more likely to stop Aggressive therapy chemotherapy and other kinds of treatment sooner They enrolled in hospice earlier. They had less suffering at the end of life Their family members six months after were less likely to have PTSD symptoms and depressive symptoms and then the fascinating thing is follow-on studies have since shown That the patients did not live shorter In fact in the best-done trial with stage four lung cancer patients those who had early palliative care discussions lived longer by 25% and That possibility that what we were doing out of inability to have these conversations effectively and know what words to use was that we were failing to Make decisions that actually served the ultimate priorities and goals that people have Because we simply couldn't have the conversations and couldn't Identify what those aims might be Now part of the difficulty in my mind was all right, so then what what am I supposed to talk about? What is this conversation? So I would ask these folks What Had a checklist For what I'm supposed to do in my office next week when this comes up. What would be on your checklist? And they said Cobbled together, you know, they actually do kind of have a framework in their minds Number one is that you should be able to have a conversation where you are talking less than 50% of the time So I tried that I went to my clinic I sat in front of the patients and I realized I talked 90% of the time. I had lots of facts and figures information pros and cons about different options Just like Cali's parents were offered Here are the options. Here's the details. Here's all the information. What do you want to do? When what people are looking for is guidance But you can't offer guidance if you don't understand something about who you're talking to and you can't talk less than 50% of the time If you don't ask questions And what they were really good at I realized what the palliative care doctors and others were really good at is they made a Science of the conversation or at least a skill of the conversation. They treated that conversation with kind of exacting technical breakdown and Sense of learning and practice that I was bringing to how I do an operation So on their checklist that they suggested was some of the questions that they'd learned to use along the way So one was What do you understand your condition or your health to be at this point in time? What are your fears and your worries for the future? What are your goals if your health worsens what kinds of outcomes are unacceptable to you and from that You suddenly understood what they were willing to sacrifice and what they were not willing to sacrifice What what you were trying to save them for what kind of life was worth living to them and Then you can make those options come to be but they needed you to help make them come to be and help guide them along the way So this time when I got this call I Tried it. I tried asking those questions Not everybody is able to answer them, but Peg did I Said So what's your understanding now of your health condition? and she said I'm going to die She said it flat out There's much nothing more that they seem to be able to do She said it with anger in her voice. I Said what are your goals then if you feel time is short And she said I I don't I don't have any I can think of I said well then what Are your fears? What are your worries for the future? And she gave me a litany She said she feared facing more pain Suffering the humiliation of losing even more of her bodily control. She'd become incontinent for the last two weeks She'd been in in bed and pain Unable to really move Just immobilized She said she feared dying in the hospital. She'd just been there for days Getting worse and worse and worse now the other thing I discovered in walking around with different folks Visiting with hospice workers is that they didn't see their role as helping people give up You know, I had this image of hospice. I'd never actually seen hospice. So My image was of a black hooded nurse with an IV morphine drip And instead you know one nurse that I spoke to Said the way she saw her job was not to let nature take its course She said she saw her job as doing the opposite of what medicine does Medicine sacrifices your time and quality of life now For the sake of possible time in the future But when people find that their possible time is fading and their quality of life is just getting worse She felt her role was use medical capabilities to give people their best possible day now And so I said to Peg that what hospice is might be about Not trying to give up but trying to fight for something different than just time That she might fight instead for just having a good day Seemed like it'd been a while since she'd had a good day She said yes Yes, it has So I said would that be worth Fighting for would that be worth hoping for just one good day Thought about it a couple days later Martin her husband had persuaded her that that might be the best goal and she went home on hospice I Had to break the news to my daughter Hunter 13 years old a hard conversation to have with her too I said she wasn't going to be able to have piano lessons anymore with Peg And we said she was dying She was struck really low. She said she wanted to see Peg I said I didn't think that was going to be possible But a couple days later Peg Called her called us up herself and she said if we were willing and upon her wanted to She would like to teach her again Even though she was on hospice. I mean this was amazing to me Neither she nor I could have conceived at such an even notion could be possible but when she went home on hospice she met the hospice nurse her name was Debra and Debra Worked to have a conversation that just said, you know, let me understand a little bit about what is most important to you right now in your life and Let's work to try to make that possible. Well, what was most important to her at that time was just She was miserable. She was suffering and she wanted the suffering to stop And so they worked on that They brought a hospital bed down to the first floor So that she didn't have to climb stairs and try to navigate it just to use a bathroom Put a portable commode at the side of the bed worked out ways to have a routine for bathing and dressing and then they Tinkered with her medications for pain considerably increased her morphine dose Much higher than she'd been on Added a drug called gabapentin And then they discovered that they gave her Ritalin that helped combat the stupor that she experienced on this and as her anxieties Plunged because her challenges came under control She began to lift her sights I think somebody in the position that she was in in the hospital two weeks in pain and continent With nothing left to offer except a life of being comfortable might have chosen death with dignity assisted death And not known anything more might have been possible But once she lifted her sights her husband Martin said to me She came to a clear view of how she wanted to live the rest of her days She was going to be at home and she was going to teach Now that took planning and medical expertise to make it possible The team had to learn how to calibrate her meds to give her just enough morphine That the timing would allow her to be under full pain control when the lesson came But not so groggy that you would have slurred speech and freak the kids out and they found that sweet spot Martin said that she was more alive running up to a lesson and for the days after then he'd seen her in a long time She'd had no children Her students Filled that place for her and she still had some things that she wanted them to know before she went She wanted to give them her goodbyes and some parting advice the When I saw her I Realized that medicine had forgotten how vital Such matters can be to people when we approach life's end we're dealing with Constrictions in the quality of our life People want to still participate in the world They have a role they want to share memories They want to pass on wisdoms and keepsakes. They want to connect with loved ones They want to make some last contributions to the world and That role many people argue is among life's most important One of the people who I think has best articulated some of these ideas was Lynn is Lynn de Manuel Who is among your faculty and what she points out is that having this ability to Make these kinds of contributions is an essential part of how life achieves meaning And we've not had a view in medicine of what might be important in life We think of a good life as being a healthy life But what happens when you can't be healthy? We have to have a view of what a good life is and a good life is one where you're able to express your priorities One where you have certain things that you live for that are larger than just yourself Everybody has these There you may live for your children You may live for your country You may live for certain ideals. You may live for God Peg live for her students and Somebody Somebody understood that My daughter had Well, she lived for six full weeks and my mother and my daughter Hunter had lessons for four of those weeks And then there were two final concerts one the last recital of Her the children that she taught and then also a concert bringing together former students from all over the country to play for her the Music was played in her living room. Her students played Brahms and Dvorak Chopin and Beethoven for her And then a week after the last concert she fell into delirium and Then a few days after that died peacefully in her own bed But for me my final remembrance of Peg Was from near the end of the children's recital, which was a few weeks before that After the children had all played she took the kids aside one by one to give them a Personal gift and a few words and I saw her when Hunter got her turn to come up She gave Hunter a book of music that she'd picked out for her that she wanted her to learn and to keep And then she put her arm around her and gave her one more gift You're special She said to her Now is something that she wanted all of her children to understand I think these are the possibilities that we have missed out on by having such a narrow viewpoint of what a life worth living is There's more than just a healthy life We take it for granted that of course my job is to keep people healthy Of course our system is about keeping people healthy But then we have no view of what happens when they're not healthy About what happens when they have to make sacrifices In the course of care along the way But I think we have a glimpse through many of these other professions of a medicine that begins to embrace the idea that our job Is it really well-being? And that's bigger than health It's tied to the purposes people have in helping them achieve them I think peg was just one example where what I began to emerge with was a feeling of actually being competent and Finding that some of my most satisfying medical experiences and Family experiences have come from knowing what to do even when we couldn't fix the problem So for that, I think many of you I know are here who've contributed to that knowledge Helped many of us learn and have fought for a change that might make a medicine that is Makes life worth living our aim ultimately is not a good death Our aim is as good a life as possible all the way to the very end Thank you Thank you very much for a wonderful presentation and the floor is open for questions or discussion points That was a wonderful talk that you gave. Thanks so much. I guess I understand your point about Caring for patients and end of life is really an art form in medicine and I'm wondering if you see any alternative such as using big data analytics to predict Death of patients and if that can drive the type of care that you provide to them or it might be more of a You know certain people fit into certain categories, but if that's a good approach considering the Expensive costs of end-of-life care the way that it goes in some places It's a great question you know, it's I'm talking about very human Connections and relationships making a difference. So how could data make any kind of a difference? And I think there's a couple things along the way that we found and I don't end up writing it in the book But we're trying to implement some of these ideas at the Dana-Farber Cancer Institute Where we've been able to enroll the clinicians of the entire Institute in a research trial We got 80% participation of the clinicians and it involves a few elements Number one they agreed to be randomized and half of them got training in being able to take this kind of five questions approach to Their patients that's a distinct shift You know, we've evolved from the paternalistic doctor doctor knows best doesn't tell you your options May not even tell you your prognosis and your diagnosis because hey, you know, I don't want to worry. You're pretty little ahead about it To one where in the 70s and 80s we rebelled against the idea that the doctor didn't tell you what they were doing and why they were doing it And what we moved to was the informative doctor that gave you An understanding of all your options and all your information And one key element where we still don't have nearly a use of sufficient data is to personalize The information about your condition to have much more information that you can bring to bear on discussing prognosis with patients Now the trouble with the informative doctor is that that's not sufficient, however that the discussion of a more accurate prognosis Doesn't get you past the idea that you're simply giving lots and lots of options for no guidance along the way And moving into the counselor role is a critical component So in this trial what we're attempting to do is teach people how to take that counselor role Even very senior clinicians who feel they know how to do this very very well We give them a two and a half hour training. We have them talk Give bad news and work their way through a decision with a patient actor Using it going the way they usually do and then trying it using the questions approach And finding we're getting enormous support 90% feeling that their skills improved by the end of it and the net result is that The next step along the way is that they agree to then let us Come through the data to identify the patient's most at risk of dying in the next six months Now we have a data-based approach that certain diagnoses can be at high risk or kind of constellation of conditions And we can predict which patients are high risk It also turns out to be equally powerful simply ask the doctors. Who would you be surprised? If who would you actually be who would you not be surprised to find out that they died in the next year? If you're not going to be you don't know that they're going to die But if you wouldn't be surprised those should be people you have a conversation with So using the data approach and using that other approach we have made the second component which is That we notify them when those patients come to clinic Kind of asterisk national name that these people should have a conversation They don't have their health care proxy don't have that information and we find just two triggers by email Are sufficient to get 90% to have the conversation and now we're tracking the outcomes For 400 patients and we'll see how that goes But the clinicians and the patients are having more of these conversations and we'll see whether that makes a difference And I think some of those mechanisms can be the way to do it. Hi. Thank you very much Like you. I did not get any training in end-of-life care in medical school either Mona Kanna. I live here in Chicago So as you move through airports now on your book tour I'm wondering if you had the opportunity to see the October 27th issue of don't quote me It's either us or people It it made me stop and look at it because the cover is I choose the right to die is a woman She's I think 24 Maynard 20 right lives in Oregon 29 and she wants she's gonna die in the next two or three weeks before her milestone birthday She can do this because she's in Oregon and do this intractable brain tumor And that's why she doesn't want to live anymore or go through any more treatments What do you think of that possibility becoming available throughout the United States not just Oregon a Couple of things and I've complicated views on this so Brittany Maynard has announced, you know She has an advanced glioblastoma terminal progressive brain cancer and she fears that Not inappropriately that the suffering she will go through leave her no other options That people won't be there for her and so she has said on November 1st. She's going to take her life Is Harold Pollack here? Harold there he is in the back Harold is here at the University of Chicago and his writing on this case actually is probably the most Influential in the way that I think about it Number one I Do think that people who have unbearable suffering deserve the Right to be able to hasten their own death if that unbearable suffering is unavoidable That and I think we've shown that you can develop systems that can safely identify the patients who are most Genuinely terminally ill with that kind of unbearable suffering and not simply depressed and committing suicide The only 1% or less of the population in Washington, Oregon choose those options when they die And what's interesting is only half of them end up using the prescription It's enough relief just to know the option is there if the bear at the suffering becomes unbearable Now that said I think the second thing though is that Every patient who chooses that way is a sign of our health system failure But we've failed to generate solutions to address suffering This debate is unfolding not just in the United States So in the Netherlands was the first place to bring this in and it's about 4% of the population choosing this pathway out and That's really disturbing to me You know the Netherlands was the first to develop euthanasia But the they were one of the last to bring hospice and palliative care in in Europe in India this debate is unfolding and You are in a place where they don't give narcotics very often to people with terminal cancer So imagine you're in unbearable pain and all you can get is a Tylenol And someone says well we can give you assisted death a Lot of people would choose that If there's nothing you were doing for their suffering But that is a system failure and while we should give the right to relieve your suffering because the system has failed you the system has failed you and We should not consider that the end at the beginning of it And we have to assist with living and with being able to make it possible to not suffer at the end but in fact to Perhaps even have moments like pegs where you can Express your priorities the goals and things you're willing to sacrifice for and enable you to be able to do that to the extent Hi, thank you. There was a wonderful talk I'm a general internist and pediatrician here And I have lots of older patients with diabetes and other chronic illnesses And it strikes me that some of the same questions are very relevant for you know Especially people over 50. We're all terminal and you know as we care for people with chronic illnesses To what extent are those same questions relevant and useful in that setting? So it's I think they're hugely relevant and I didn't expect that when I was investigating the book But once you realize we're not asking people about their priorities and end of life You realize that people have priorities besides just living longer throughout their lives And that when those abilities begin to become constrained by chronic illness or by frailty that those goals Need to be known by the people helping them try to live as well And it's infected I think that lack that absence is infected many of our institutions for the care of people dealing with disability or frailty If you go to and then so my book ends up being two-thirds about not even end of life at all I'd talk about the development of the nursing home industry and how these are places that above all sell themselves on the idea that you're going to be safe They were created really as a way to empty hospital beds with people who weren't getting better And the idea was that they'd go to these places to be nursed back to health Never quite acknowledging that that wasn't going to happen And so these are places that you know think a lot about your safety You have to take your medicines on time. You have to you can't have alcohol You know you can't have a drink when you go in to these places you If you're at the slightest risk of falling you're put into a wheelchair and Not a lot of thinking about what your goals might be. This is why people hate going into these places No one is working to make you stay connected to your friends Or to continue to take care of the dog that you love Oh, no dog allowed can't even bring your own furniture And I described some places that are pioneering Approaches that ask these questions as part of care. I think it could be part of Chronic illness it can be part of how we redesign places to become very very different and very interesting Thanks a lot. I appreciate your talk My name is Dan Bronner. I'm in geriatrics and at the ethics center here and To say that what you're saying is is not exactly brand-new is you know, right? Yeah, but you know, I think part of the issue I specialize in you know, not brand-new like No, but the checklist was only what a century old, but you say brilliantly I Think part of the issue here. I mean I could speak to a lot of things you said I think part of the problem with the conversation and checklist as you probably saw was that Really a checklist may get in the way of conversation right because it sort of directs it and it doesn't allow the person who you're talking to You know, it can't predict the latitude that you'll need I think the the interesting thing about end-of-life care for me now is the way And I think Deb spoke to this a little bit is the way it sort of shift things shift so dramatically at that moment That we finally admit it becomes so obvious. We have nothing left to give you now Let's talk about your goals Whereas I think as that pointed out, you know There's lots of instances before people are about to die that we don't have that much to offer You know, but we still offer it and it's this sort of default model of medicine I call it the cardiac arrest paradigm because I think it really started in the 60s with the default Application of CPR and I think that sort of engendered a way of dealing with people in which we give them the options Whether or not we think it's going to help them or not because this is the list of options that we've been told to offer And I think you know to really improve medical care at this time I think what we need to do is drastically, you know, move beyond that paradigm. I Couldn't agree more. I think though that the the question and the where people become alarmed is when you move beyond that Paradigm, what are you moving beyond that paradigm for what it what becomes the goal? And if the goal is we're going to save some more money That's death panels and that frightens people to death obviously, but the goal Absolutely, but I think the thing that I learned from hanging out with a geriatrician for example in my hospital was that It's reframing what we're fighting for that we're not fighting for More time regardless of the consequences Fighting for the kind of life that you want to live for within the constraints that you face Yes, if we can lift those constraints away great, but let's not sacrifice what you're alive For in the first place and so I was struck meeting with the geriatrician is he saw a new patient in her early 80s And for the first time that was I was my first time in the clinic And I was thinking through how I would have looked at this woman who had a new lung nodule had high blood pressure that Still was not entirely in control had Complained around about back pain and my thoughts where we either should be attacking the back pain Where we should be attacking that lung nodule that might be the biggest threat to her because she was very mentally intact living independently at home And what the geriatrician did was spend an inordinate amount of time looking at her feet And then step back and said the biggest threat to your life and the way of life you have Because she said the most important thing to her was being able to be independent in that apartment In that apartment she had gardening and taking care of her dog and listen to the Red Sox every night during baseball season The biggest goal was to keep that preserved and what he saw was that she had the three major risk factors for a fall in the next six months She was on five or more medications She had foot problems that he discovered and she had some weakness issues in being able to get up from a chair Now I didn't know those risk factors. We don't teach those generally to anybody and Then you add in that he could prevent those from happening That he could take action and fight for that time she had even though he wasn't fighting for longer life He was fighting for better life and a year later when I saw her She'd been having falls at home prior to that appointment and after a sequence of things that he did She had no more falls the rest of the year and was still living independently on her own in that place And that that's that kind of victory helps people understand What it is that you do and your colleagues do and making it possible to pursue goals and use our capabilities Not blindly with no idea of what a good life is but exactly to what people see is a good life for them So before I hand the microphone to the next question ask her I'd like to know if you have any experience with parents of children who are dying and Maybe talk a little bit about that since it's pediatric Grand Rounds. Yeah. Well, the only thing I'd say is that So I don't Take care of pediatric pediatric care myself But it's been the this incredible movement of per pediatric palliative care that is blossoming out of the field of palliative care Palliative care really started about people with terminal cancer and Balfour Mount at McGill in the 1960s But in the last 20 years has become this incredible movement around Recognizing that some of the people who said that in fact the people who often suffer the most at the end Are those the younger that the younger the patient the more we inflict out of a out of a feeling that it's giving up to acknowledge what's happening and I think there's been this blossoming of this pediatric palliative care community including people here that have been able to Bring these same skills to bear. These are still the same skills and questions that you end up asking the parents And I wish I'd also asked Cali who at 12 years old could tell us exactly what she feared And what she worried about and what her hopes might be if her health wasn't was not going to do any better Hi, I'm an internist in the pediatrician and I really Appreciate the talk that you or the point that you made about listening and Asking what people's priorities are and I think the one side sometimes that gets lost Is that some people's Life issues are still very unknown and unpredictable and courses can be very variable And so the one thing I still find lacking even doing everything that you said is the practitioner that gives somebody hope And so I don't want hope to be lost in all of this and I don't mean false hope I mean real hope and I do think sometimes that gets overlooked especially Among practitioners that maybe deal with a lot of end-of-life issues No, it's a it's a It's a struggle that I find, you know, I'm a surgeon. So I go in with great optimism With everybody and they're looking for that optimism and confidence from me that What we're aiming for will be the whole lottery ticket that we will have cured the problem and finding the language and the words that to encapsulate the idea that We have uncertainty and it's possible that really great things can happen but they were also prepared for the possibility that it doesn't and that we're That at no point are we giving up on them That we're simply trying to work out. What are we fighting for with each step along the way? One of the things that's cleared that I learned from these kinds of folks is that we're this is a This is not about getting patients to come to an epiphany This is about a process in a series of discussions because people's views change as time goes on What you will tolerate what you will be willing to accept can can shift as you have experiences of some of these things and as you find that there's More joys and possibilities within narrow constraints that then you sometimes expect there to be and so we have to make room not Only for these to be conversations we have at all But to be able to revisit them as conditions change And then we have to add in the picture of the family because 70% of the time people come to the end with somebody else needing to make the decisions and Being able to understand what people's own views of a good life are are really important what I found is that Forward moving this way is that it becomes less about hope because it becomes much more about what do you hope for? What kind of life are you living for? What is the reason that you're here and when you're talking about somebody who has a chronic illness like she was talking about or Just needing to go through you know a difficult operation that I've every reason to think they're going to make it through But I still want to know as I'm going through it, you know, what's important to you And I think those are Capabilities that that's part of the art that we're in need of recultivating you've been very eloquent about Sharing the time and the relationship aspect of Medicine that's involved in this process and there are many systems variables that really interfere with that and one of the things in Practicing with children with disability are Issues of trust and issues of abandonment and there are families who have had Very negative experiences that really have sabotaged their trust because the Communication has less been ideal and at the same time they need the supports Are there any suggestions that you have so that it's The family's fear of abandonment isn't exacerbated in these situations My sense of it and This is my sort of sense from talking to all of these different kinds of patients Is that the abandon that most feel is that when things aren't working the way that the doctors had hoped You know invariably you try step one and you try step two and then when it's not working That's when we tend to pull away and offer less and less and feel less comfortable that we know what we're really fighting for And so I think the striking thing to me is that I felt that I am able to offer Some competence and capability Even when those moments come because we've identified what we are in fact fighting for even if it means that sometimes I'm recommending we not do the operation that I suggest but I tell the story of Patient of mine who had a malignant ovarian cancer that had caused a bowel obstruction and When we understood what her priorities might be, you know, one is I've gone in often on these cases and just Tried to find a way to Reopen the bowel bypassed give them a colostomy something to allow them to eat again And people will be absolutely willing to eat rather than just die but Very often I just make matters worse. They have leaking stool. We have fistulae It's it's a mess And what this patient helped me understand was yes, we're gonna go to the operating room I want that chance to eat But I don't want you taking risky chances that would leave me in the hospital In the course of doing so and so when I got in and I found the bowel caked with tumor I understood exactly where she drew the line and so when I didn't When I didn't end up being able to bypass and just put in tubes and let her Have relief of nausea, but she passed away a couple weeks later But she didn't feel abandoned That we that we were still recognizing what she was fighting for even if it couldn't be More time and I think that's the trick along the way the abandonment comes when The doctor tends to walk away feeling I've got nothing more to offer and we generally do Well, thank you so much dr. Gewande for a fantastic talk The Department of Pediatrics would also like to thank our great sponsors dr. Siegler the Bucks bomb Institute in the McLean Center David Axelrod Steve Edwards here at the Institute of Politics for giving us this opportunity for such a wonderful talk