 We're in a very Indiana University. This is from Michael Who really liked your talk and your intervention had a couple questions one is it seemed like in your study? you had to Get or talk to two thousand patients in order to get two hundred in your study now number one I wanted to know why those patients declined So many declined and then secondly Patients who did participate. Did you have any information about their knowledge or their prognosis? And did you have information on that and and maybe if they thought they had a great prognosis then they weren't anxious or Have any emotional responses? Well first of all There were two thousand people who were referred to the study Many of them actually weren't eligible after we looked at the entry criteria and So it wasn't quite two thousand in order to get to two hundred, but there are a variety of reasons people declined ranging from They they were just too busy. They weren't interested. They were too sick. The family member didn't want to bring them to appointments It was burdensome. I mean they're all sorts of reasons But it just sort of affirmed the challenges of doing this sort of thing. These were people who were quite ill and We were asking them to sit through several hours of an intervention as well as many phone calls We we contacted them every four to six weeks After the intervention until they die and just many people didn't want to do that So there are a host of reasons why they didn't Participate in terms of what did they know about their prognosis? We never told them their prognosis the physicians who referred them Were told that the entrance criteria would be you wouldn't be surprised if they died within the next two years That's sort of we loosely framed it, but the patients themselves may or may not have known that In fact, we did a small sub-study looking at patients awareness of their diagnosis and we compared What the patient said their diagnosis was with what the doctors said their diagnosis was with what the The pathologist said their diagnosis was and we found that they agreed maybe 85% of the time but there were we had patients who had brain tumors and we asked them to Do of cancer and they said no So there's people out there who are really unaware of their their medical condition But most of them did did know Next yes, please Abe Schwab I'm from Indian and Purdue's campus in Fort Wayne. It's a question actually about the surrogate decision-making there was a strong emphasis on Decisions that the surrogates could live with after the fact and I guess I was a little unclear I Was hoping I would have a nice tight articulation here. I'll try and say this as quickly as I can How how is the how are we approaching this we want the surrogates to make a decision that they can live with Because there's a number of reasons I would be concerned about that as a primary decision-making criteria One is it may undermine respect for patient one is it may lead to you know violation of non-maleficence But then also there's concerns about the surrogates ability to make a good judgment about what they'll be able to live with because we often Over-inflate how much something is going to affect us over the long term So this leads the question is this actually a moral criteria? We're using about what surrogates should be using to decide how they should decide for the person They're deciding for or is it something we're thinking of as a practical necessity in order to make surrogate decision-making work And it wasn't quite clear which way you were viewing it Okay So I guess I've been really influenced by work that's come out in the last few years about PTSD and PTSD symptoms in Surrogates who've made decisions for a loved one in the ICU and there's literature from France where they found that the Incidents of PTSD symptoms six months after someone had made end-of-life decisions for someone else in an ICU The travel I guess the incidence was about 82 percent of these people had PTSD symptoms There's another study from San Francisco Which found actually a diagnosis of PTSD which was about 30 percent of surrogates Who'd made decisions for a loved one in the ICU in light of that? I've been thinking about what are things that we can do during the decision-making process that might affect that down the Road and I think I've seen in my palliative care work where surrogates are pushed into making a decision right now and They may not have time to really think about which decision they're going to live with and their loved one's going to die Regardless, but they're not and if there's something we can do to prevent further morbidity That's sort of my take on it But I recognize that it's a little different because yes our primary duty is to our patient and Yet there are a lot of patients that We can't save and if we can't save them and they're comfortable then I think we do need to look at what the surrogates are saying a little bit I don't know if that answers your question What you're just describing about the PTSD and the burden of surrogate decision-making That's the entire focus of the new study that we're doing is to look at whether using our intervention can help Diminish the stress of surrogate decision-making by helping people to be more informed about what their loved ones would want as well as being more Confident in being able to make decisions obviously It's not going to get rid of all the stress of having a loved one die But at least it can help eliminate The stress that's associated with just not knowing what it is that they would want Lydia Dougdale Yale University. My question is for Dr. Fournier. Thank you very much for your talk I'm not a Pediatrician I'm an adult medicine doctor and I was interested in your definition of humanity in death and particularly I was interested in The time frame that you proposed after withdrawal of fluid and nutrition of three to five days as being a humane period of time to wait before Sedating the the baby to death and I was wondering I don't know if this is common practice In pediatrics, so maybe that's one question. I have but I'm also wondering in France if there has been a Conversation between the pediatricians and the adult medicine doctors in terms of what humanity means for an adult who's dying after withdrawal of artificial nutrition and hydration Thank you very much for your question Humanity and inhumanity are Terms that have been employed by the parents themselves and the families So it's not our own definition. It was interesting to to hear that they always Tell the same things under this this world Actually, we are conducting the same study in three other groups in France in adults group That are proposed to have withdrawal of artificial nutrition in duration, too in geriatrics in palliative care and in people with very heavy Neurological damage we didn't we haven't finished the study yet on these three groups, but we have a Feeling that it could be quite the same and We don't know exactly, but it could be a sort of Paradigmatic shema for illustrating all these for everyone which is interesting But I can't tell you at this point. I must come back next year to tell you Hi Eugene Boreza from McGill questions. Dr. Fernier as you know, but probably because of the language similarities We've had a small number of French-trained unitologists practicing in Quebec and a couple of cases I've been involved in the It seems like the neonatal community has judged those neonatologists as being very aggressive pro euthanasia Individuals in the particular cases they've been involved in when I speak to them However, it's interesting like on your slices not focusing on the act in my conversations with them They do not perceive themselves They don't frame it as pro euthanasia or pro aggressive They seem to be telling me that they see it as They come now to a culture which is where autonomy has run amok and they're trying to preserve what they think is a core Responsibility for beneficent paternalism is that resonated at all with your experience? Yes, it's exactly what I what we found. I'm okay with you Great, I yeah, I'm Bob Taylor from the Heisting University and I do I do palliative care and Lisa I wanted to Comment and maybe a question but Regarding the question of PTSD and living with decisions When I talk to patients and families and situations where the patient is probably going to be dying in the near future Not necessarily immediately and the patients are able to converse One of the questions I most commonly ask is what's most important to you and by far the most common answer is that my family's Okay, that they are you know not overly distressed by my death So that kind so I guess the point I'm making is that It's not just for the families. That's a way of caring for the patients is to make sure the family's okay Yeah, and there there is from a bunch of different sources literature where patients have talked about burdening their loved ones and concerns about that Died They died too quickly it seems inhumane if they survive What what what would keep you keep one from interpreting those finding is just what people want is the pretense Of not killing but they want to make sure that they just live In some way maybe I can summarize it is In fact what what's being advocated in the middle way a sort of still a form of slow Euthanasia because the intention is still to make the baby die more quickly Yeah, that is exactly the threshold on the first model Doctors and parents when they are okay with that are happy to let the baby You know maybe survive but in the two other models that means in the majority of cases they are all together favorable to a Hand of life project and that the baby die because they consider that at this point It is his best interest and if the best interest of the baby is to die So we have to assume it and to really do everything to Alleviate pain and put some comfort and be with good relationship, but not to let him having chance of surviving Okay, so it can be it can be called slow Euthanasia. Why not? Okay Well, I want all of you to join me in thanking our panel for a really excellent presentation