 On behalf of the McLean Center, I'm delighted to welcome you to today's seminar series on ethical issues and end-of-life care. Next Wednesday, Dr. Bill Meadow, Bill, raise your hand. We'll be speaking on the topic of predicting end-of-life. I now want to introduce our speaker today, Dr. Joel Frater. Joel is the A. Todd Davis Professor of Pediatrics and Professor of Medical Humanities and Bioethics at Northwestern's Feinberg School of Medicine. Joel is also the medical director of the Bridges Palliative Care Program at Lurie Children's Hospital. Dr. Frater received his MD from Tufts University, did his residency at Children's Hospital in Philadelphia, and was also a Robert Wood Johnson clinical scholar at the University of Pennsylvania. Joel's research spans a wide range of ethical issues, including innovation and research in pediatrics, transplantation, caring for children with disorders of sex development and gender identification, the allocation of health resources to services for children, and pediatric end-of-life care, especially in intensive care settings. Dr. Frater has written extensively about the ethics of withdrawing and withholding life-sustaining treatment, and he consults regularly on questions regarding life support for patients at the Lurie Children's Hospital. Joel has served on the Committee on Bioethics of the American Academy of Pediatrics, a committee that he chaired for four years, and on the Committee on Ethics of the American College of Obstetricians and Gynecology. Joel was elected to two terms on the board of the Society for Health and Human Values and is an elected fellow of the Hastings Center. In 2012, Dr. Frater received the American Academy of Pediatrics William G. Bartholome Award for Ethical Excellence, which recognizes people who have contributed greatly to public discussion of ethical issues in pediatric medicine. Today, Dr. Frater will speak on the topic you see behind me, end-of-life decisions in pediatrics, how they differ. Please join me in giving a warm welcome to Joel Frater. Thank you, Mark. Well, thank you very much for having me here. I should say at the outset that it was a bit of a struggle to put this talk together, largely because it wasn't clear to me, at least when I started, what the ethics focus ought to be. I hope I will come to that, but the first part of the talk, at least, is information about what pediatric palliative care is all about and to the extent that I understand it, which I think I do, how it differs from palliative and hospice care in adults. This is pretty informal from my perspective, maybe more formal for Mark's, I'm not sure, but if people have questions as I go along, I'm perfectly fine with your letting me know and we can stop and talk about it. The ritual disclosure slide, I don't have anything to disclose. So just to give people something of a perspective here, approximately two-and-a-half million individuals die in the United States every year, and of those, only 55,000 deaths are those up to 18 years. So you can see that we're already talking about a very restrictive, very small population of dying individuals compared to what's going on in adult medicine. Now if we were to compare this to what's going on in the developing world, it would look very different, but at least here and in Western Europe, the percentage of deaths that are taking place among those up to the age of 18 is really quite small. As a result of that, there's a very low density of dying children, even in places like Chicago, and as a result of that, there are very few expert providers. Now I would say in the 150-plus tertiary care academic medical centers with pediatric programs, probably 65 or 70, maybe a little bit more than that, have dedicated pediatric palliative care programs. A good portion of those are nurse or advanced practice nurse only run, so no dedicated pediatrician palliative care docs. And then as I hope you'll see in the next few slides, in the next part of the discussion, the pattern of death and the pattern of participation in palliative and hospice care in pediatrics is pretty different from that in adult medicine. So the first thing to know is even among those 55,000 or so dying children in the United States, about half of them, more than half of them actually, occur very quickly. So within the first 24 to 72 hours of presentation to hospital, these are in many cases traumatic deaths from accident and homicide and suicide, their neonatal deaths following premature birth or with major congenital anomalies of one sort or another, or catastrophic illness such as meningococcemia or something like that. And we can come back to this if anybody's interested, but it's not clear what if any role palliative care plays there. So the bulk of the activity of pediatric palliative care providers is focused on the 20 to 25,000. So again, not very many low density kids who are identified as needing palliative care over a much longer time. And we can talk about what the correct time is if anybody's interested. And of those non-acute deaths, most of them are due to the things listed here, cancer, congenital anomalies, neurodegenerative diseases, neuromuscular disease. So the demographics I think are pretty interesting as opposed to adult hospice care at least where 80% of the patients are cancer patients in pediatric palliative and hospice care. And by the way, we don't really make much of a distinction between palliative care and hospice in our world and I'll attempt to explain that a little more as we go along. Only between 30 and 40% of the patients are cancer patients. That's reflective of the percentage who are dying in any given year. So again, it looks different from the way it looks in adult medicine. And it's important to understand that in pediatric cancer, unlike adult medicine, 75, that's a rough number depends on which subgroup you're looking at, but 75% of those kids survive their cancer for at least five years without a major event. The oncologists like to talk about cure, I think that's not necessarily the best word to use because many of those cancer patients have a whole lot of problems that are with them for the rest of their lives, even if their cancer doesn't come back. And of course, the significant proportion of them, something like 15% to 20% are at risk for second cancers. This contrasts to what happens in adult medicine and depending on which disease you're talking about, what kind of cancer, overall the survival for more than five years is about 15%. So the bottom line here is that there's a wide diversity of diagnoses among the pediatric palliative care population and that's quite different at least from what adult hospice care looks like. Now some of the medicine's pretty different too. I think those of you who take care of adult patients will understand that many dying adults are dying of multi-organ involvement and have multi-organ system failure of some sort or another. That's generally not true for the patients that we take care of in pediatrics. So many dying children have healthy cardiovascular systems and it stays that way until the last hours or days of life. As a result of that and the fact that most of them again have healthy lungs, doing fairly simple things like providing blood products, whether that's platelets or red blood cells, on a regular basis or using relatively expensive but effective nutritional supplements, whether that's perennial nutrition or formulas of one sort or another, can provide a very good quality of life until again the final days or final hours. It's not unusual for us to take care of a kid who's actively playing and happy maybe with some pain issues that need to be addressed but that's part of what we do until the last couple of days of his or her life. That's pretty different from what it looks like in much of adult medicine. Now this issue of when you should enroll a patient in pediatric palliative care or hospice care is extremely controversial. I'm not going to say a lot about it other than that there are two camps in the world of pediatrics. One is that any child with a life-threatening illness, some would say that means not likely to survive into adulthood, others would say like in cystic fibrosis where the average longevity is 37, 38 years these days, that any patient with a life-threatening illness ought to be enrolled in a palliative care program. That turns out to be an enormous number depending on how you define it and most of us I would say think that that's not a good use of dedicated pediatric palliative care resources but there are a few of the well-established programs around the country such as the one in Milwaukee where they attempt to care for anybody with a chronic serious illness who might die as a result of that illness. Part of the issue for us is that we have very limited ability to predict between diagnosis and time of death what that time span is going to be like. Of course much of that is because of what I said in the beginning of this slide which is these kids often have healthy cardiopulmonary function until the last very little bit. So there aren't very many kids who are dying, it's not a good statistical base and much of the child is healthy despite a life-threatening disorder so we don't know how to predict. We'll say a little bit more about this in a minute. The other thing I want to say about this is a lot of what we do is technically more difficult or at the very least unfamiliar to people who care for dying adult patients which is why medical directors of hospices who are geriatricians or internists or oncologists or whatever their background might be really don't want anything to do with caring for children even if their organization is the only one in a limited geographic area that provides in-home end-of-life services. Whether that's got to do with the way we dose medicines or whatever it presents serious barriers and I would say that our team spends an awful lot of its time trying to identify hospice agencies throughout downstate Illinois and into Indiana and sometimes up into Wisconsin where we can get them to accept the care of a patient of ours who happens to live in one of those communities that's outside the collar counties of Chicago. So within Chicago or within the seven county area of Chicago there are 37 or 38 hospice agencies only two of them have dedicated pediatric programs journey care which is based in Barrington and Horizon Hospice which is based here in the city. Nobody else has a dedicated pediatric program on any given day the Horizon program has about 40 or 45 kids enrolled journey care which has a somewhat more expansive definition of who they'll care for than the Horizon folks do has a population on any given day of 110 to 120 children that they're caring for many of whom for that program are not actively dying. There are some important economic differences that it's important to think about. If you're an adult who qualifies for Medicare so that's a much broader group of patients than is true in pediatrics the only Medicare eligible children are those on the end stage renal disease program so it's for all practical purposes none of our patients but in order to enroll in hospice at least until recently there's some flexibility about this now you had to agree as you entered a hospice program that you were giving up curative treatment so no more radiation no more chemotherapy and in many cases no more blood products no more medications that might be used to sustain life such as constant infusions of inotropes that could effectively treat people in congestive heart failure and could be done at home those things as I said are getting a little bit easier to do within the Medicare hospice world but the philosophy of having to give up curative treatment is one that still dominates the adult hospice community. It's simply unacceptable in the world of pediatrics so forgoing chemotherapy and other disease-oriented treatment versus focus on just symptom management is just not something that parents and in many cases doctors will accept that's true of pediatric oncologists it's true of people like Bill in the world of neonatology but I think it's generally true in pediatrics it's much harder for people to agree to forgo continued attempts to at least support basic organ function if not continue to try to cure it's important I think to try to think about why that might be so other than the fact that in the developed world it's no longer acceptable for children to die before their parents as a general matter but the other thing that's really important is to appreciate that at least in two worlds the world of neonatology in the world of pediatric oncology over the last 50 years there's been phenomenal progress so the ability to support patients and get them through in fact getting to the point of extended survival in pediatric cancer so when I was a resident less than 15 percent of children with leukemia the most common cancer in pediatrics survived more than a year or two now we're up to at least in standard garden variety acute lymphocytic leukemia five-year survival is in the range of 90 to 95 percent very different from what it looks like in adult medicine and that's true in the world of the neonatal intensive care unit as well enormous progress in supporting patients and getting to the point of independence from ongoing medical treatment in many cases and long-term survival in the last few years part of the ACA we've seen a requirement in federal law for something that's called concurrent care what this means is that at least in programs that are supported by federal funds so for us that mostly means Medicaid that states are supposed to provide both palliative care and hospice care as well as continued payment for curative treatment I think you can readily imagine that there is an enormous variation state to state in how this is implemented if at all I know that in Illinois we have to go to Springfield literally or figuratively with each case and try to get the folks there in Medicaid to accept the fact that the doctors and the family have decided to continue chemotherapy for example as well as providing in-home palliative in some cases hospice therapy and just a word about the distinction palliative versus hospice largely a non-issue for us the only difference is really a payment issue so to the extent that one is enrolled in hospice the hospice agency assumes all of the economic responsibility for the patient's care all of the medications the visits from nurses social workers chaplains etc all of that comes out of a single daily payment as opposed to palliative care where there is some version of the continued fee for service medicine and that can be for the palliative care services along with the chemotherapy or the blood products or whatever it's obviously difficult once you move to the administrative designation of hospice to continue some very expensive things including home tpn which can cost anywhere from a thousand to fifteen hundred dollars a day or blood products which are also very expensive particularly for our cancer patients who get irradiated blood or otherwise selected but it's enormously expensive to do that so in fact there's a reluctance even when it seems obvious to clinicians that they transfer to hospice which buys you a little bit more in the way of ancillary services because it means it's going to have to come out of the hospice's pocket and I can tell you for certain that the two pediatric hospice programs that we work with are not making money they're losing money they're supported either by subsidy from the adult programs that they're associated with or by philanthropy or both in any case federal law is supposed to require states to pay for concurrent care but it's more theory I think than anything else at this point the law also ignores what are in my mind inexplicable differences in reimbursement between adult medicine and pediatrics I'll give you one example that I find absolutely inexcusable just because I happen to know about it it's not from the world of palliative care but if one of our interventional cardiologists does a complicated procedure that may take three four five hours in the cath lab he or she is paid between a half and a quarter or between a quarter and a half I guess it's a better way to put it of what an adult cardiologist would be paid to do a very similar procedure even though it may take many more hours to do it in a kid because it's technically more difficult to accomplish it the reimbursement for the pediatric practitioner is substantially below what it is for the adult medicine provider that happens to be true as well in the world of hospice care so it's not as dramatic a difference but the reimbursement for pediatric hospice services is less than the reimbursement for adult hospice services you can make of that what you want what's the reason they can get away with it I think you know there really is no justification children I mean you could argue in some larger sense that children's lives are valued less or whatever I think it's a historical accident it's continued and there's not a strong enough set of political forces to correct it that that's true but that's not really I mean it's historically true although that distinction was supposed to have disappeared with the institution at least part of the ACA but it doesn't explain why there should be differences between reimbursement for kids right so in any case part of the part of what we face as pediatric palliative care providers is that there just aren't very many of us I don't have a most recent count after the last certifying examination and by the way there's a single certification examination at hospice and palliative medicine that I took and fortunately passed but it's the same one that in turn as geriatricians obstetricians anesthesiologists etc take single exam 90% adult medicine so much of it was anybody's guess from my perspective there is not yet and I suspect it's going to be many years before there is a dedicated pediatric certifying examination there are fellowship programs I say here only 10 to 15 in the country I've been noticing in the last few days that there's been a mushrooming of programs so we're probably up to 25 or so but not very many so we're not churning them churning out pediatric palliative care providers for a variety of reasons and you know that just means that there aren't a lot of people who are at least trained and expert in providing palliative care now again in contrast to what goes on in adult medicine where many people have made the argument I think a good argument in adult medicine that training adult medicine providers whether it's internists who are primary care providers or general family doctors or or even gynecologists in end-of-life care and that's what the AMA based epic program is designed to do you can't really do that in pediatrics because training primary care pediatricians to care for dying kids is pretty much a waste of time the average primary care pediatrician has one death in his or her practice every seven years and most of those deaths as I said before are from acute kinds of things and so training those doctors to provide good end-of-life care might be a nice thing to do but they're not going to be able to maintain their skills and at least some of us would say that there are a specific set of skills and at least a sense of familiarity with much of what we do that needs to be kept up and it's just not possible to do that carlory to that is that most palliative care and hospice agencies that provide care in the home have no one trained to do specific pediatric care they may have among their group of nurses that are providing care to 80-year-olds somebody who spent some time as a pediatric nurse at some point but it was probably many years ago and because of this density issue low density they don't have opportunities to maintain their skills and you know some of that is again technical stuff like putting in IVs or drawing blood or whatever and some of it is just the comfort level dealing with dying children and the multiple psychological issues and their families and we'll get into that a little bit more so in most cities even in places that have a children's hospital of some sort there are not home pediatric hospice services to refer dying children to so there might be a children's hospital we were just recruiting somebody who's doing his pediatric palliative care training in Memphis there is a children's hospital there at Le Bonheur part of the university system and there's St. Jude's children's research mostly cancer hospital and they have lots of dying children but when these kids go home they have no place to send them where they can get expert in-home care by people who need who know how to care for children so I think everybody in the room either does or I hope will know that palliative care is an essentially interdisciplinary practice it's not just some doc in an office some place writing prescriptions for opioids it's a collective process that involves nurses social workers chaplains and in the case of pediatrics very often includes creative arts therapists like music therapists visual arts therapists pet therapies massage sometimes if we're lucky etc it's an essentially interdisciplinary practice and perhaps more so in pediatrics than in adult medicine that's arguable and I don't care to argue it but I think what's really important is that a very explicit part of the job for pediatric palliative care teams and home care teams is caring for everybody in that child's life so it's actually providing treatment in the case of siblings through the art therapists or the music therapists or in some cases the social workers as those kids are going through the death of a sibling it's not just you know walking into the home and saying hi and looking at a dressing or checking on someone's symptom needs it's explicit care of other family members and in some cases beyond the family extending into school systems and you know you can well imagine that in some school systems having a dying child in the classroom represents challenges for the other kids who are almost certainly going to know what's going on at least in some way at some time and for administrators particularly when there are things like do not resuscitate orders to be dealt with in many school systems have a great deal of difficulty with having a child in the school who has a do not resuscitate order so we have more patients than just the patient him or herself or a spouse and as a result of all that it costs more to do what we do than adult hospice and palliative care and I think we all should acknowledge that the emotional toll of caring for dying children does represent a psychological burden on the staff as well as on patients and family members and that it's not easy stuff to deal with the burnout rate is not insignificant and it is something that many of us spend a fair amount of time trying to address as I said before the developed world kids aren't supposed to die and in fact they don't as the two and a half million dying versus 55,000 children demonstrates so this is an ethics seminar so we're going to talk a little bit about ethics so what are the differences between ethical issues in pediatric versus adult palliative and hospice care well the obvious one is that most of the time we're not dealing with an autonomous patient and most of the time we don't have a track record about the patient's values and preferences that we can fall back on so we can't use substituted judgment when we're making decisions so we're using the decisions usually by parents or some cases other legally appointed representatives but it raises a bunch of issues the first is so at what point do we include the child as a decision maker you know I have to say in the small amount of experience I've had in the world of adult medicine this is an issue in adult medicine as well the extent to which one should include or not include it's a cultural issue it's an issue for older patients who may have compromised brain function so I don't think it's unique to pediatrics but it's pressing I think so if we have a teenager say 14 or 15 year old with cystic fibrosis who's got particularly bad disease isn't one of those who's going to make it middle 30s or 40 who's been to the ICU two three four times with respiratory failure and intubated uh many of those kids have some pretty strong feelings about whether they want to go back to the ICU whether they would want to be resuscitated and those feelings might differ significantly from the feelings of their parents and then we have to grapple with the differences between the legally authorized decision makers and the children so it raises a sort of general issue of when is a minor mature enough to make his or her own decision now I do need to say that modern neuro science is telling us more and more that making the clear bright line at age 18 is silly that something like psychological maturity executive function whatever terms you want to use probably isn't happening for most healthy adults until age 24 25 26 so middle 20s so we have a whole class of patients who are legally entitled to title to make decisions for themselves who probably aren't making very good decisions and what we should do with those folks I'm not sure I doubt we're going to change the politics of age 18 being the age of majority but I think this notion that 18 has some magical powers is something that we should all abandon so if we can't legally or otherwise use the patient's own values and preferences for decision making then what do we use as a standard I already said we can't use but substitute judgment because we don't have any way to do that so we're supposed to use this thing best interests of the child well if anybody in the room thinks they know what that means let me know I'll write it down I have no idea what it means I think it's a mantra that I hear pediatricians and pediatric nurses and social workers invoke all the time as if there were some sort of standardized definition of this and there was always agreement and the reality is there's often no agreement whatsoever about what constitutes the best interest of the child let me give you an example relevant at least a certain extent to what we've been talking about on a pediatric bioethics listserv that I look at and sometimes respond to and participate in there's a case that's been posted in the last several days about an adolescent with in stage liver disease who comes from a religious community that makes collective decisions about the uses of resources pays out of so they typically reject insurance pay out of pocket if you were from the community resources and the recommended medical treatment for this 15 year old or so is liver transplantation but both the community and the patient say sorry we're going to forgo this we understand that this might provide many years of extended life and even a good quality of life but all things considered we don't think it's worth it and the question is you know should a kid of this age be entitled to reject life-saving treatment of that sort now peter correct me if I'm wrong I assume you've seen this discussion online I was actually pretty surprised to see general agreement among at least those brave enough to contribute that the institution shouldn't go to court and that this decision should be honored by this young patient and the community I think if that had come up 10 years ago we would have had a very different response and I think what's really interesting to me is the success of liver transplantation in particular and the quality of life following liver transplantation is a lot better now than it was 10 15 years ago so it's hard to make the argument from that point of view in any case I'm only trying to say that who it is that decides and on what basis and even what we mean by the term best interest of the child seems entirely up in the air to me and every time somebody invokes this notion of best interest as if it were clear what it means I cringe so whose call should it be unclear and then I think a part of this conundrum about best interest is that if you take it seriously if you take it literally at least in the way it was described by the folks from Yale 30 40 years ago who wrote most about it when they first did you can only focus on the interest of the child the interest of other family members the economic interest of the family all sorts of other things shouldn't count shouldn't count that's an ethical imperative from that perspective I think that's not how families work those other interests must count but many people have a very narrow view of what best interests of the child mean and don't want to take into account a more expansive notion of the child in the family which is after all how most kids live not all but most so there are some important symbolic differences in the care of dying children versus the care of dying adults the most obvious one is if you're dealing with an 80 year old with colon cancer disseminated colon cancer many people feel perfectly comfortable invoking some notion of this individual has lived a full life and it doesn't have quite the same emotional impact as dealing with say a seven year old with a disseminated neuroblastoma there's no full life to look back on there is in fact at age seven normally a full life to look forward to so when you can't do that that has a very different kind of psychological and social impact on people and I think this is most poignant in the world of continuing life through the means of medically provided or artificially provided fluids and nutrition clearly many of us those of us who have been parents in particular have very strong positive feelings associated with feeding our children babies in particular young children who can't get food for themselves etc that's part of what we do as parents as caregivers and we're hard-wired to think of that in a positive way so much so that the thought of not doing that is really hard for lots of people it's particularly hard for parents but I think it's also very hard for many doctors nurses and others and it seems to me to be independent of the means by which the food and fluids are given so logically one might argue and one certainly sees this with regard to adult patients that if the patient refuses to to take nutrition or fluids orally that's fine that's some sort of decision there may be discussions that are somewhat controversial about the adequacy of the decision that is a decision-making capacity but nobody gets bent out of shape these days except perhaps in certain religious communities about not feeding adults who make a conscious decision to stop eating and drinking that's not true in our world and it's particularly not true in the world of babies so in the new natal intensive care unit at least in our institution bill you could tell us about yours the decision not to do ng feeding or intravenous feeding in a baby is always fraught it is always difficult even when everybody agrees that the best thing for this child would be to die having that accomplished at least in part through the withholding of fluids and nutrition is an exceptionally difficult thing to pull off part of this I think is because again going back to what I said earlier these kids have healthy cardiovascular system healthy lungs and it often takes a long time for them to die up to two to three weeks and as they're dying you can see the effects of dehydration and poor nutrition they literally shrivel up and that's extremely difficult to watch it's very hard for parents it's very hard for bedside nurses it's easier for the attending physician to walk away but it's very hard to watch and I have seen any number of situations where people have embarked on that pathway and when we're 10 days into it or two weeks into it and we can't say when this is likely to end everybody starts to get extremely uncomfortable so I think this is an exceptionally hard thing to do in pediatrics and in particular in the nursery we do have some persistent myths about children and treating children including dying children it's astonishing to me that these things persist and I have to say they persist strongly in the medical community including the pediatrics community these include the fact that children especially babies excuse me are less sensitive to or don't remember pain there's an enormous body of literature at this point that says even premature infants who are in the neonatal intensive care unit who have their heels pricked day in day out over and over again for weeks and months have a very different response to pain when they're four years old or five years old than those who did not have that experience they may not remember it in a conscious sense but it's now wired into their brains babies I assure you feel pain anybody who's ever been to a ritual circumcision of a little boy knows that babies feel pain so how it is that this myth persists is beyond me but it's still there similar myths exist with regard to response to opioid so people out there still believe that kids are more likely to experience respiratory depression from ordinary doses of opioid than adults there may be an argument that this is true in babies under 34 weeks gestation it's simply not true beyond that but I cannot tell you how many times in a week I encounter from some nurse or some resident and unfortunately many parents oh no we don't want you to use an opioid on our dying child because you're going to make the child stop breathing it it's a real persistent problem there's another myth out there that somehow kids become more addicted more easily addicted to opioids than adults as no basis in fact in the seven years we've had a pediatric palliative care program in our institution and believe me we use buckets of opioids we've had one kid who has developed a substance abuse problem that's a pretty good track record it's very rare and I think there's a fair amount of data out there that suggests that consistent aggressive pain management leads to much less psychological dependence than inadequate pain treatment now I want to be careful here I'm not talking about physical dependence any patient who's been on an opioid regularly for five to seven days develops dependence and needs to be tapered off those drugs that's clearly not the same thing as addiction kids who have their pain managed appropriately are no more likely to develop addiction than anybody else so all of this stuff as far as I'm concerned is nonsense but it takes up an awful lot of our time dealing with family members often grandparents who are terrified of the use of opioids as well as unfortunately doctors and nurses who want to know better so there are also some myths out there about various aspects of decision making the most persistent one I think among pediatric physicians is that parents can't bear the burden of making decisions at the end of life for their children and therefore we need to spare them from that experience I have to say there is no empirical support for this notion I think it's a wish that operates at a number of different levels but any work that anybody has done on this question at least in the last 20 years including work that we've done in a variety of settings has made it clear that parents absolutely want to be intimately involved in these decisions somewhere between 20 and 30 percent of the parents that we interviewed said they wanted to be the only ones making the decisions they didn't even want to hear any input from doctors or nurses so they don't run from it now let me be clear it doesn't mean there isn't an occasional parent who says I can't do this or I won't do this of course there are some parents like that but by and large parents want to be involved in decisions so there's really no support for claims of a heavy guilt burden to the extent that families don't want to be involved I'm not saying that they don't feel guilty because it's the universal experience of parents that they have some element of guilt about what's happening to their child but that's different from willingness to take a share in the decision making about the child most families seem to prefer some notion of shared decision making with the clinicians and as I said before some children with life-threatening illnesses also want a role I think there's a great deal of variability here I think there's a population of chronically ill kids with life-threatening disorders who have been for a variety of complicated reasons that we don't understand very well infantilize psychologically by their experience but there's also another group of kids who are mature beyond their years and who understand what's going on even as young as 14 and 15 and want very much to be participants so it's important to make an assessment of the patient I think this is probably true and adult medicine as well about the extent to which the patient wants to be involved parents don't by and large have a choice if they are the legal decision makers we have a hard time if they say they don't want to be involved in the decision that doesn't go down well in our world and I think one of the biggest arguments for not leaving children out of the discussion is and we've learned this from various interviews with kids that almost always they know what's going on especially if they're in the hospital a lot so they understand what the issues are but they often don't feel entitled to talk about it because they feel that talking about it is only going to upset their parents and they don't want to do that they want to protect their parents from what they know is already an enormous emotional burden so leaving the kids out further isolates the kids and from my point of view probably isolates family members as well so as a general rule our practice is even when we run into opposition to families is try very hard not to yield to parents requests that we don't discuss what's going on with the patient now obviously it depends on the patient right if a child with serious neurologic and intellectual incapacity then that's one thing if it's a clearly very immature kid or a very anxious kid there may be other things to think about but it's a general rule even for relatively young children by which I mean four and five year old they need to be included in some way so what about the business of where children ought to die well we don't really have a lot of data what we know is that if you take two comp more or less comparable institutions so lorry children's hospital where something like 75 percent of our cancer patients die at home parent preference and compare it to children's hospital philadelphia where 55 percent of the parents of kids with cancer say they want the child to die in the hospital how do we explain that fairly dramatic difference I don't think we have great data about this some of it probably has to do with population differences between the folks that our friends at chop care for versus our population but but honestly we don't know this is cultural it's religious it's got to do with ethnics ethnic preferences etc but there's a lot of variation if you ask dying adults most of them will tell you that they want to die at home and that's our experience with parents of dying children but clearly it's not it's not universal a piece of this might be although I'm a little skeptical of this the fact that there are not inpatient hospice facilities that kids can take advantage of in most places there certainly are almost no pediatric specific inpatient hospices in the united states as opposed to canada as opposed to england how much that contributes I don't know I do think that for many patients that we care for who are sick for years and years before they enter a dying phase they form very strong bonds with their clinicians both the doctors that are caring for them and the nurses in the hospital etc and they don't want to go someplace else for the last days or even weeks they want to continue those relationships shunting them off to an inpatient hospice is easily seen by them as abandonment so I think that plays a very big role in this occasionally we will have parents tell us that they don't want the child to die at home because they don't want the other children especially younger children to be exposed to whatever that means to the dead body or whatever and of course we honor that it is however our experience that that doesn't turn out to be a problem for most families most families figure out how to deal with that just the word about assisted dying and euthanasia so even in the united states in the few states where physician assisted suicide is legal minors are specifically excluded you could argue that at least for mature minors that's unfair but it is the way it is uh you know much of the fear among adults who at least worry about having access to physician assisted suicide has to do with uncontrolled symptoms my contention in general is that palliative care physicians are almost always able to control symptoms now admittedly that may be at the expense of consciousness so in order to keep my patient pain free under certain circumstances I may have to render the patient unconscious and some some individuals don't want that they'd rather die than be maintained in that state even if it's only for a few days in any case the option isn't available to us although I have been asked by older adolescents at times if I would provide a prescription and I have to say no there are a few places in the world where euthanasia is legal in practice the Netherlands being the best understood pediatric euthanasia there I have to say remains somewhat controversial even in the Netherlands but certainly controversial in the rest of the developed world having spent some time talking to some of the pediatricians and neonatologists in the Netherlands who practice this way they have a different conception of euthanasia than we do and most of what they're talking about is what we would call withholding or withdrawing life-supporting technology but they do do what we would call active euthanasia from time to time they have a different take on it in any case it's not legal here I've certainly heard both parents and clinicians say can't we do x and the answer is I'm sorry we can't that would not be acceptable from the point of view of putting the clinicians and the institution at risk just a word about research ethics it has been the case until very recently that a lot of IRBs have a lot of trouble with doing research on dying children I think we and others have demonstrated that that's a wrong-headed view and I think that's true for two reasons first of all the science of pediatric palliative and hospice care is way behind adult medical care we've got a lot to learn and if we're really going to make progress in improving the care we need to do systematic investigation of one sort or another but the other thing and I think this is the most persuasive from a moral perspective at some level is everybody who's done this kind of research who has almost all of us have gone back and asked the parents what it was like to participate in this research have not only said this is really important you should continue doing this work but we felt better as a result of taking part in the in these studies so it is experienced as therapeutic for a substantial number of families and the fact or the worry that we're going to just upset people I think is a myth that IRB shouldn't worry about anymore one pet peeve or dnr orders and pulse orders so these are things that apply by and large to out of hospital experience I don't know what you folks do here at Comer but we don't make parents sign anything when there's an in hospital do not attempt resuscitation order most children's hospitals don't do this even though our lawyers would like us to do this so we don't go to them with a piece of paper when we agree that we're not going to attempt the resuscitation but when they leave the hospital to go home for hospice care in the home we make them do that so the state form requires a parent or legally authorized representative to sign and we have certainly had a handful of cases in the last five to seven years where parents say I can't do it I don't want my kid resuscitated but I simply can't put my signature on that piece of paper it's an important psychological barrier and the post movement has not dealt with this at all so those are the things that I intended to say I have some cases that are exemplary but I think I'll stop there and I'm happy to entertain any questions just one simple clarification I'm your number of 55 000 deaths for people under age 18 does that include preemies and neonates yes it does thanks again Joel your great clinician and a thought leader and all this so I really appreciate it apropos of both that and the question about the Amish community do you think that pediatric on palliative care especially but maybe all of palliative care could learn something from those communities that are experiencing death more often I'm not saying that the Amish are but they're within a tradition that's kind of ties back to that and in as you pointed out several times in our culture in society we just don't have as much experience with it I mean would there be value in training in countries that are experiencing more or learning from the ways they handle it what are your thoughts on that I think there's certainly is value in it I worry that discussions like this would simply see these communities as marginalized and not very important and have a hard time taking away general conclusions from discussions of that sort I don't think it's impossible but I think we tend to think of them as other and it would be hard to overcome that I think you touched briefly about why more palliative training for the general pediatrician probably wouldn't be that useful what about more formalized training for the pediatric specialties that are going to encounter this most often so the oncologist I'm a pediatric cardiologist I certainly think that among my colleagues you know we certainly have more deaths than one every seven years and more formal training I think people think they're trained in it because we see a lot of death but more formalized training I'm curious what you think about that I'm all for it I think in our institution there's an attempt to have some fellowship training about this it works most effectively and most frequently in the pediatric intensive care unit some people seem to think that a lecture a year is somehow going to provide all of the education that fellows need I think that's silly like other kinds of learning in the world of pediatric subspecialty it seems to me that one learns best through a combination of observation and mentoring and among other things I would say that that's an argument for early palliative care consultation and involvement of palliative care teams so that we can work together with families have discussions together with families about goals of care about symptom management and that that should absolutely include subspecialty fellows just another point of just point of information I'm adult medicine doctor and the last time I looked regarding this disparity that came up halfway through your talk in terms of how much how pediatric specialists are reimbursed compared to adult the last time I looked at the general of the 10 major specialties I can't speak for hospital based pediatricians but the office based pediatrician it was the lowest paid specialty of all the identified specialties you know across the board you know you may know that better than I but I'm just adding that in no argument