Dr. Christy Cummings - Hope, Communication & Shared Decision Making in the NICU

you you you you you you you you you you you you you you you you you you you you the you我不 you don't you not Thank you all for coming for today's surgery green rounds. We are super delighted to have one of our amazing 7 North neonatologist, Dr. Prissy Cummings here with us this morning. Many of you know her. She's taken such excellent care of many of our surgical patients in the NICU. Dr. Cummings received her MD from University of Rochester and she's trained in Pediatrics and Human Natalogy at Yale as well as ethics where she at Yale and also at Harvard Medical School completed the Bioethics Medical Ethics Program. For those of you who don't know her, she is one of our neonatologists at Boston Children's and also at the BI. She has a particular interest in medical ethics, communication, hope, ethics and so we look forward to her talk this morning which will be on hope, communication and shared decision making in the NICU. Thank you so much, Dr. Cummings, for sending this morning with us. Great. Thank you so much. I'm going to be walking around a little bit. Can you hear me? I don't have that actually, but hold on. Hello? Perfect. Great. Great. Great. So thank you so much for having me. I'm really, it's an honor to come back. I've spoken to a group maybe three years ago or so. So this is all new material and I was just laughing with Smala. There is one slide that is duplicative and so I'm guaranteeing that as the student audience you'll be able to point that out for me actually. Coffee onto that person who can point out that one slide that's a copy a few years ago. But really, I really thank you for listening and I want this to be interactive. So please ask questions along the way. So I have no conflicts of interest or financial disclosures, the contents on bias and evidence space as possible. There's not going to be any statistics in this particular talk. So please get ready. This is going to be a lot of fun. So silence yourself, phones or pages if you can. So although nothing that I'm going to present to you today relates to this, I am an NACHG funded with an RO1 now focusing on optimizing the prenatal content, prenatal consult and extreme pre maternity. But again, none of that will be presented today, potentially a future talk. So as Smala mentioned, my niche is in ethics in the NICU, focusing on all of these areas, my passion and I'll talk about some of these things today, but really focusing on communication and shared decision making. So I'll review to share decision making in the NICU. I know that with this audience that you're very familiar with the basics of shared decision making from informed parental permission for surgical procedures, all the way to complex decision making. So we'll review a little bit of that and then we'll delve down a little bit deeper into what I am calling shared decision making 2.0. And this really has to, this relates to an evolving phenomenon called a long shot therapy. And this was written up in a paper that I'll describe. And I think that it's really relevant to us as a quattenary referral center. So we'll talk about that. We'll recognize the importance of parental hope and decision making. We will review the historical futility debate. Yes, we will go there. And then we'll compare and contrast futility with fantasy and describe and to critique some proposed communication frameworks that I hope that you'll be able to take the best pearls up and incorporate them into your own practice. So as many of you know that over the past few decades in the United States at least, the decision making has swung all the way from paternalism decades ago where the providers, the physicians, made all the decisions independently and then swung all the way back to autonomy where providers were really just information tellers and really provided a statistical data dump to their patients and families. And the burden of the decision was entirely resting on them. And lately this is now the pendulum is swung back into the middle where we have this concept of shared decision making, particularly with families where we relate information, provide all reasonable options, the most current evidence as well as uncertainty. We also elicit families, preferences, values and incorporate that into recommendations to aid in the best decision for that personal individualized patient and family. And so this is the concept of shared decision making and it's well established and accepted as the pretty much the gold standard in pediatric. We know that people make decisions very differently than one another, but most of them tend to make decisions with their guts and their hearts. And this was shown in many studies and highlighted in this particular book thinking fast and slow. I don't know if any of you have read about its excellence. And people often make very informed, even higher level complex advanced decisions, often without much cognitive effort. And so the preference is not on all the statistics and the morbidity mortality data that we often present, but really boils down to gut emotions made with families. We also know that the way we present decisions to families can be affected by availability by us, so the relevant information that we have at hand and what we present to families can alter the way that they receive the information and also the way that they make decisions. This is also called a framing effect where a provider may unconsciously provide and frame the data as only the survival statistics. And that potentially can sway the results of the decision from the family. Conversely, a provider might only provide negative or mortality statistics. And even though both data are true, the way that this is framed can influence decision making. This has been shown to be true, for example, in counseling and extreme prematurity when survival data or conversely mortality data are only provided to families. So again, share decision making. This is where we provide all the reasonable, ethically permissible options. We talk about the risks, the alternative of not pursuing a particular therapy. We then really try to elicit family preferences, have them ask questions. What is it most meaningful for them, for families? What are they focusing on? What are their hopes? What are their goals? And then try to arrive in mutually agreeable decisions on the best interests of the child. John Matt has recently published in the New England Journal of Medicine a really nice framework that I think sums up shared decision making very well. What I like about his framework which I'll quickly go through is that he actually has some really concrete advice and tips, including phrases that you can incorporate into your own practice, whenever there's a decision to maybe. And just to point out again that if there's no decision that's to be made, for example, then this isn't relevant. So it has to be an ethically permissible decision option when you go down this path of shared decision making. If antibiotics are indicated, for example, for an infection, that's not really shared decision making. That's really a recommendation based on most current evidence available. So in prepping for a conversation with families, the first thing is preparation, right? Meeting with the parents, you need to make sure that you know the child's name and gender, get that right. Make sure you know there's social medical history, be mindful of the language that you use and we'll get back to this in a minute. The parents remember every word, every gesture, every expression. Be ready to actively listen. I think that's very important. Sometimes we're uncomfortable with silence. And we need to just take a moment to listen to the families and to be present. I think it's important also to, before difficult conversations with families or family needing is to recognize their own biases that might be present. Do you already think you know what might be best for this patient and this particularly family without actually having talked to this family and understanding where they're coming from and what their values are? Had you having racial religious cultural stereotypes about the family that might be preconceived or based on another family that you've had in the past? And then establish goals for the conversation. And it's not for you to come in with a built-in agenda already of what you want to achieve. It's really to ask the family and arrive a consensus about what they would like for this meeting as well. So two, proceeding on with the meeting. So, logistic and advocate. I think this is basic again, but creating a safe space, finding a quiet room. Some parents actually prefer to have conversations at the bedside. Some families prefer to have a quiet room. And we can obviously accommodate either, avoid interruptions, hand off your page or yourself on a possible to a colleague so you're not going to be interrupted during the conversation. And then basically, I want to introduce yourself and a role and know the baby's name, gender, et cetera. And this is, I think, the most important part of this framework and we'll come back to this. I really like how that it is a continuum. And so, I want to acknowledge it motions. And these are some really good examples of how to do this and put this into practice. Elicit parental hopes, fears, goals and values. Reflecting these backs to the family, summarizing them, to help them think through this. And then moving towards a shared decision. I think sometimes families don't even realize that there might be a decision to be taken, a decision to be had. And this has been shown for example, in the delivery room with resuscitation, extreme prematurity. Oftentimes, so many families leave the consultation and didn't realize that there was actually a decision to be made. And I think that's really unfortunate. So I think it's important to say, look, we face a decision here. Explain those ethically permissible options and then help them work through this. And I think going through this cycle is an example of how this can be a continuing conversation. And that decision may not be made at the end of that one particular meeting with a family. You might need to summarize the meeting and then say, I think if you need some time, if there's time to be allowed, if there's nothing urgent that has to be decided now, you can say I will come back with you. Maybe take a moment to think about this with your friends family. And we can have another discussion. These are some other phrases and words that actually this language has been used shown to be very helpful with families who are facing difficult decisions. A lot of these languages taken from the pediatric advanced care team here and the Patti of Care language and literature. Chris Futner is, I've also cited here from CHOP who's wonderful with this and has laid out some very nice examples and wording. But I can only imagine, yeah, I wish statements. I worry I'm concerned and then also for decision making many, when presenting options, many loving families would choose this. Similarly, many other loving families who might choose this and just to lay it out there so that families understand that choices you'd support either choice or how there are many choices there are. Some other language also from the PACT team is to hope for the best and prepare for the rest with some language examples there below. I'm just sharing that limiting interventions doesn't mean that you're limiting care. And I want to be cognizant of being careful with language here and saying when we're withdrawing care, whenever we're withdrawing care completely. And I would urge you to talk specifically about this and saying withdrawing life's technologies or withdrawing the ventilator or withdrawing medically administrative nutrition and hydration. I think that's important so families don't feel like they're abandoned if we do decide to proceed through comfort care. For continuity and support, the possibility of re-examining decisions and having other discussions that you're there for this family and that you're not going to abandon them. And the decision making is mentioned before which I really liked that figure before that shows that decision making is a process and that it may change and that's all right. So moving past the basics of shared decision making, I wanted to really talk about the focus for today is these concepts of long shot therapies. And so I think we're seeing this more in the NICU and I'm sure you're probably seeing this more in your own surgical practice where families of critically ill children have exhausted local treatment options and they're seeking these long shot therapies or treatments in ICU's around the country at these quatnering referral centers. And this is typically seen as a last resort. It can be described as Hail Mary for example where families are still hoping for some cure or some benefit. Do this, you know, these, this Hail Mary, I feel like many families feel like that they're doing their job as a good parent to exhaust all options and are advocating for their, for their child and other families again come to this with certain faith systems or value systems that really support pursuing every option. I don't know if anyone has seen or can think of any examples in your own practice of these long shot therapies. We certainly, I can list some in the NICU while you're thinking. For example, we have patients with congenital surfactant deficiency who come to us for consideration of transplants. And so that's one example also severe bronchopulmonary dysplasia who also really exhausted all local treatment options and are also coming to us for possible long transplant. That's one, those are two examples. Any examples in your own practice where you can think of? I'll give another example is resuscitation at 22 weeks and this has been a hot issue in unatology as well. But perhaps there's some surgical techniques or patients that you're caring for that seem to really be pushing the boundaries and that this might resonate with you. So think about that as we talk a little bit more. So these long shot therapies, so if it wasn't possible, we wouldn't be even pursuing these, right? So the potential benefit of pursuing a long shot therapy is there is some chance, maybe however small, there is some chance, some evidence that this actually might work. And so there could be some potential benefit through this long process that a child may actually be cured or achieved some clinical benefit. I think this does allow, if the event that this does not work, it does allow more time potentially for families to prepare for their child's death. There's the psychological benefit for families knowing that there's been all attempts made to save the child and this can be very impactful for families as they were for the child. So we've reflect on their duties as being a good parent and we're writing their narrative as they remember their child in the journey that they made. It's also the parental reassurance that providers didn't give up on intensive interventions without exploring all possibilities. And now we move into the potential harms. And so this is what some authors have described as moving into a clinically unachievable fantasy where we progress down this journey, we try to pursue this long shot therapy and it seems like it's actually not working. And so some authors have described this as a fantasy. We're going to get back to the language and the use of fantasy in a minute. But the potential harm is that it actually doesn't work. And that during that process there can be pain and suffering. This is, I put here with a caveat, we're pretty good at treating physical pain and suffering in the NICU and in other ICUs. And we should be able to mitigate that physical pain. However, there's another element of sort of existential pain and suffering and an element of dignity that I think is wrapped around this as well that that's another issue. I think during these journeys pursuing long shot therapies there's the potential for poor communication, misaligned expectations between the family and the medical team. And this can result obviously in moral distress from staff at all levels, from nursing with the bedside 24-7 to providers, different consults and teams. There also can be an element of inadvertent deception of the family. The family is still really thinking that this might work in the medical team seeking gosh, it looks like this isn't working. And then there's disconnect between the providers and the family. I think some of those authors have also raised the point about question and consent or informed parental permission. Really, if this is a long shot therapy, how much evidence is there really to support this? And are the parents really informed of these data and the risks and the potential for really this not to work? Also family anguish, inadequate preparation for the child staff, have the family, although they have a little bit more time, they're really thinking that this might work and then all of a sudden it doesn't. They can actually have the commerce effect of being ill prepared for their child staff. And then finally, there is a question of resource allocation that has come up while pursuing these long shot therapies, which we never really applied resource. I think that the bedside would try to really think about them, or really from an organizational level. So this is the article that came out about a year ago now in American Journal of Biothics that described this phenomenon in the ICUs mainly pick use and nick use across the country, where families are increasingly pursuing these long shot therapies that evolve into fantasy and what are our obligations as providers caring for these families. So American Journal of Ethics then asks for invited commentaries and so we'll get to that. And then we'll describe the four stages of the long shot care that the authors lay out. So stage one, as you can see, is the long shot hope. And so you have to really recognize that there's this long shot therapy, recognize that this is actually what you're dealing with. Stage two are the initial actions of pursuing that therapy, actually transferring to the Quatchenery Center, pursuing the therapy, initiating that therapy. Stage three is where you are at this threshold of when initial period of intent is no longer possible and stage four devolves into fantasy, what they label as fantasy where it's clinically unachievable now and then finally death. I think it is important to remember that at any of these stages, sometimes the medical team and the family can come together and recognize that this is no longer working and they can exit that pursuit and pursue palliative care. I mean palliative care is end of life care here, not palliative care as a support that really should be instituted throughout all four stages is an extra layer of support for families and for staff. So an example of this and again this is not a surgical example but one that you probably can relate to. Signed is a three month old 27 week triplet born in the NICU. He was the result of a highly desired IVF pregnancy after multiple attempts with surrogacy. Simon's triplet to brothers died of premature in the first few weeks of life and then eventually a few months old he was diagnosed with this infantile fibrosychroma very rare but it was extensive and so he was transferred to a co-coumationary ICU, a NICU for experimental chemotherapy. And so the authors, this is based on two story, the elements have been identified to provide protection and privacy for this family but the treatment then the authors describe how this evolves until a long shot clinically unachievable fantasy. And so they've taken this case and outlined the stages from one to four here with the long shot hope which is the pursuit of experimental chemotherapy followed by tumor section. They implement this in stage two then they see in stage two that they're approaching the thresholds that despite all their efforts they're not making for progress but however they continue with yet another fourth round of chemotherapy even after they realize they're not meeting their original goals. And so Simon ends up passing away. So I think the proposed framework actually I think that the authors have come up with I'll go into detail here I think is actually excellent and can be modified for use. I think there are some critiques that I have with it which are outlined but I think in general the communication framework can be used for some of these situations. So stage one I think we have to properly frame the care as low odds, long shot right at the out, long shot right at the outset. This can start really from the initial call oftentimes we get transport calls into the NICU and the discussion starts there before even actual transfer has occurred and this is a really good point really on to understand exactly what the request is for transfer to communicate with the team and even the family and consulting specialists as needed depending on the situation to really understand what the request is, what the goals of the family and the providers are and to really articulate that this might be a long shot therapy right from the very beginning. Also explaining that there's a high likelihood of failure or a curative treatment and then at this point too is crucial to lay out the clinical benchmarks indicating what might be seen as favorable or unfavorable clinical progress. I think this is key we often don't do this and families are kind of left in the dark about what might be a good progress forward or not and this is commonly done in other areas for example in research with clinical trials we have benchmarks criteria we also have stopping criteria and I think that in these situations the long shot therapy situations it's really helpful to identify those at the beginning and that way when you come down further along as you progress you can refer to those benchmarks concretely. I think again I really wanted to make sure that we introduced the palliative care component of the treatment plan concurrently with curative therapies and that's essential for all these families and first staff. Each two is to schedule regular family meetings to provide clinical updates review the goals of care. Some families actually say that they don't want to meet and that can be difficult for us and the queue this happens rarely but in those cases I would say go ahead and schedule regular team meetings so at least the team is on the same page. And then allow members to also on in a different setting away from families to voice their concerns and the morale distress and this can take the place for example we have perps rounds in the NICU we have M&M we have lots of different forums where or separate ad half meetings where if there's specific concern in the NICU we can have meetings of families a sort of team members can voice their concerns. Stage three is then communicate with families when the situation is approaching a line between low odds and no odds of success or curative therapy and you can now go back and reference your established benchmarks that you discussed earlier on so that families are not thrown off guard and that you can see we talked about this right in the beginning here's what we had hoped to see we're not seeing that we're seeing this instead and you can provide some concrete evidence. And then family stage four you can definitively inform families when a consensus emerged from the team that the original goals are no longer achievable and use those established benchmarks as I mentioned before to explain the current clinical picture discuss the family's goals of care and life of this new information something called regoling and impelative care language world and reinforce the concept of palliative care and the treatment now going forward. So this was article there was a lot of commentary that was generated after this article was published and many different groups were on the country reacted to this article some positive and some negative critiques and I think the framework itself was excellent I think some of the things that I'm going to outline before next will highlight some of the limitations of the framework. So there was commentaries about honesty and shared decision making when last ditch efforts fail making sense of the surreal. Some families some authors also disagreed with the term of the use fantasy communicating with pediatric families at the end of life is not a fantasy some other groups were more explicit and in their critiques. I however really did appreciate the effort made to describe this phenomenon and some way out of potential framework and I will go through some of those critiques now though too. So I think their critiques can be lumped into two different categories ethical and clinical and I think other authors brought some of these points up as well information that is adequately delivered to families there was an assumption that that it's always adequately understood and I think that's a false assumption. There's no mucleature I think fantasy was the wrong choice of word to use I think it really gets back into the whole quagmour of the futility debate that has been going on for decades in this country and I'll talk a little bit more about that. I think from the clinical side of one of the other arguments was that if parents truly get that long shot is now clinically unachievable fantasy they're going to stop pursuing it I think we've all seen cases with us just not the case. And then finally with the framework there could be the scenario where providers might disagree upon what sage you are and what consensus means and I think that's a valid concern as well for this framework. So first we're going to go through talking a little bit more about hope and how that separate from fantasy. We'll talk about how that fantasy is problematic in of itself and that fantasy and futility eventually will blur into a clinical practice and the importance of testing such proposed clinical frameworks prior to implementing them to a practice. So just a little bit about hope I think hope is in our human nature right it's really how we can make sense of illness tragedy in our lives and then the lives of our families and children and move forward and I think it's essential and many hospitals acknowledge this and support this and I think that's correct I think. For most families there is a lot of hope and hospitals can foster and nourish this. You can see this with many of the logos in their in slogans for example around the country some of these are slightly old slogans but I took them up the web. I think for the vast majority of families this is okay. I think however for many of the families that we see in the ICU the fear is that this can be a sense of false hope for example. Many hospitals have a wall of hope and are very eager to provide evidence of all of the good things that can happen and I think that for many again many families this is true many positive outcomes. The Cleveland Clinic also recognizes the importance of hope. This is I don't know if 100 people have seen this video the Cleveland Clinic empathy video it's an outstanding but the one that always tags at my heartstrings is the one about the woman holding her arms through the side porch hoping to hold her infant today and I think it's important to remember that. There are all these hopes and if we don't ask we might not know what each family's hopes are for that day or for that visit. I think at the center of this hope is this human elements and many of you know Dwayne across the street over at Beth Israel but incorporating the human element and recognizing this hope is important. We know that parents when they make decisions again as I mentioned it's mostly from the gut and the heart and parents feel a little abandoned if physicians don't recognize such hopes and compassion. They actually make decisions mostly based on religion, spirituality and hope and I think many providers feel that if we rely on hope we're somehow providing a false hope for families or not telling them the truth and we're not being transparent enough but I really do think that we can nurture families hopes while also acknowledging relevant facts and data about progress. Lots of people have written about hope and miracles in the ICU. I think again Chris Futner who I mentioned before has a wonderful article that's about 10 years old now on the breadth of hopes. He really I love this article talks about shifting from this monolithic vision of hope with a capital H to these multiple smaller hopes that families carry with them. How we can eliminate remaining hopes that families have when the situation does change, respects the breadth of hope that they have and avoid judging or labeling false hope and acknowledge and encourage the role of emotions in their decision making. So Chris Futner says judging such a hope is either realistic or false misses the point. Rather we as providers we should judge ourselves as clinicians by the degree to which we can help nurture our patient's collection of diverse hopes. I think this is really important to remember particularly when having a relationship with the family over the course of days, weeks or months in the ICU. Another article was written with the perspective of families incorporated in these parents, parents of children who are born extremely prematurely gave some advice for providers and they basically said this is one of their quotes related to hope. Do not take away the hope that we have. There is hope that we will be able to spend some time with our child. There is the hope that we can survive the death of our child with positive memories. Do not abandon us and instead tell us you'll be there whatever happens. Next, let's turn our focus towards the language and the use of the author's choice of fantasy, which I think is a problematic. I think the importance of language is essential to think about when talking about communication and counseling. Does anybody know who this is? Does anybody recognize this slide? This is the one slide I have shown you a couple of years ago. I couldn't resist. It's one of my favorites. This is Gustave Slobert, author of Madame Bovery. It's basically him as an author wielding his pen like a surgeon's scalpel. I think this is wonderful reminder that the words we have can carry so much importance to families and can have lasting impact. Long after scars, my heel, or not the words and the language that you use with families, they will remember for a lifetime and to remember the importance of language in your everyday conversations with families. I think this use of the word fantasy offers coined this term to describe this highly specific scenario, the long shot therapy. I think this is a positive, they describe this as a late person's terminology that can really be a precise meaning, namely that the goal of cure is now only wishful thinking it's unrealistic and it's make believe. I think that there are many words that we've used in medicine to describe this fantasy, false hopes, doing nothing futile and compatible with life. I think all of these, including this definition, this lacks empirical evidence that families will agree with this late person's definition that they've come up with. I think that it actually can promote the idea that miracles can do come true in medicine, such that we see in popular media all the time. I think there also can be alternative interpretations about the word fantasy, like it could be a classical, but think about that it actually could still come true like a miracle and it may actually not be the intended meaning that authors have. And then finally, I think it can also denote the fantastical, the supernatural, or even the divine. And so I think that the distinction between fantasy and futility might blur in practice. And I think the authors tried very hard to extricate themselves from the word futile, but in a sense we're supplanting fantasy and replacing it with that. So I wanted to get back to a little bit about futility since I think it's important to mention what is futility? What is futile? What does it mean for something to be futile? This is a bit of a loaded question. So in Latin, it actually means futilist, which means leaky. And this gets back to the description in Greek mythology where these Greek goddesses were condemned to eternal lifetime of pouring leaky vessels, trying to fill a one large vessel with leaky vessels. And so since it was futile, and that's why this is the derivative. Other definitions are pointless, ineffective, and people were producing any useful results and in essence achieving nothing. And you can actually say early references to futility in the corpus, the work of hapocrates, where quote says, whatever the illness is too strong for the available remedies, the physicians surely must not expect that it can be overcome by medicine. To attempt futile treatment is to display ignorance that is allied to madness. And so our very own Dr. Schuch over at the Center for Biothics and in the PICU has written a lot about futility even stemming from the 1990s describing how there's problems with the known creature and the use of this word. So he says futility is one of the newest additions to the lexicon of bioethics. Physicians, ethicists, and members of the media are increasingly concerned about patients and families who insist on receiving leisostating treatment that others judge to be futile. A clear understanding of futility has proved to be elusive, however. And then he goes on. And I think actually this is really important to remember that there is really this dichotomous version of futility in medicine where we have a purely physiologic definition of futility where it's a treatment that cannot possibly achieve the clinical goal for which it's undertaken. And I think a classic example of this is CPR for a dying patient. It's really not going to reverse the underlying dying process. It won't restore effective cardiac function. And so the other definition, really, that medicine had grasped onto is a treatment that clinicians seem to be inappropriate. So clinicians, not the family, but clinicians seem to be inappropriate or useless based on their own values and priorities. And I think that's where this notion of futility is written in by Bob Tug. In addition to futility, generally fails to provide this ethically coherent ground for limiting life-sustaining treatment, except in circumstances in which, as I just mentioned, there's this narrowly defined physiologic futility and that can be plausibly invoked. Futility has been conceptualized in this objective and the independent of the patient's or circuit's perspective, but differences in values, variable, probabilities of clinical outcomes under minute spaces. Furthermore, assertions of futility may camouflage judgments of comparative worth that are implicit in debates about the allocation of resource. And so Bob Tug summarizes and says, ensure that the problem with futility is that the promise of objectivity can rarely be fulfilled. The rapid advance of the language of futility into the jargon of biorethics should be followed by equally rapid retreat. And so this was in the 1990s, the early 90s, that this was written. And since then, futility has been replaced. And now the more accepted term is potentially inappropriate treatment, which is a mouthful, but it's essentially replaced futility in most clinical policies and guidelines. And even Boston Children says a guideline now that's in the process of being revised, again, describing steps to be taken when parents request a potentially inappropriate treatment. And this really stems from first defining, is this a treatment that can physiologically be achieved? Yes or no, if no, then it really could be deemed as futile, physiologically futile. Yes, it can be achieved. Then there's a whole other algorithm that has to be followed for providers, if they feel like they're being asked to provide treatment that's potentially inappropriate. Let's see. So distinguishing futility and fantasy. So in this communication framework proposal, the authors really tried to distance themselves from the language of futility and tried to argue that their term fantasy was completely different. And so I just wanted to highlight that in where I think that it actually blurs despite their best efforts. So they say that futility is provider-centric value judgments invoked when a provider has made a priori judgments that the intervention is useless or inappropriate based on the provider's own views. And that the agenda of the term futility really is to withhold or withdraw life-sister statements against parental objection. So I actually agree with all of that. Where I start to disagree is where they try to extricate themselves from futility by saying that fantasy, however, is related to family-centered concerns, invoked when providers have an ethical concern that families' goals are not achievable and that the family is not adequately informed of that impossibility. And the agenda, rather than being to withhold or withdraw life-sister seeing technologies against parental objection, their agenda really with using fantasy and again this framework is to empower families to make educated decisions about licensing technologies that conform to values and priorities. And to assist clinicians in effective communication and expectations with families. And again, I agree actually with all of that, just not in term fantasy. And so I do think this communication framework can achieve all of those things when applied in these difficult scenarios, these long shot scenarios, but without using the word fantasy. Again, I think that the word fantasy could be pitched onto this vernacular slide where we have gone from futile to potentially inappropriate treatment to fantasy. And if people were to adopt the word fantasy, what really hinders them from simply exchanging futile, the word futility and fantasy in clinical practice without acknowledging those subtle differences that the authors had carefully laid out. And so I do think it all relates back to perspective where providers might see one pursuit as fantasy, whereas families might see this as goal preserving. So moving on into the communication framework itself, I think it's real important to test frameworks prior to translation into medical education and even into clinical practice. I think this proposed communication framework as they have laid out actually could be quite helpful for us as providers of the NICU when we encounter these scenarios. One author, set of authors actually proposed this is a laminateable mock pocket card. This was what the S group and so I think they were being cheeky, but I still liked the pocket card because it did highlight some of the elements of communication that I think are important for us to remember. And then going back to John Lantos' shared decision making model, I think that along with the communication model that I just articulated as well as putting in the context with this shared decision making model, I think this can really help us in the NICU when we think about families who requested potentially long shot therapies. And so I think experience, this is a quote from Kant, experience without theories blind, the theory without experience is mere intellectual play. And so I think these proposed communication frameworks sound fantastic, but I do think that instead of just immediately putting them to clinical practice, we need to explore how they work, how they're received with families, and actually put them into pilot testing, medical education, didactic simulation. I think some of these folks that you know and love might be able to help with some of this, making sure that our trainees are familiar with such frameworks and are able to incorporate them into their own practice through simulation for example. We can even do some QI work with parents satisfaction, decision regret to make sure that we're doing the best that we can in having these difficult conversations with families and making sure that we constantly reevaluate our own approach and methods for the benefit of these families. So in summary, I think that shared decision making is imperative, particularly when we're encountering these new phenomenon of long shot therapies, we have to be mindful of our own biases and language while trying to elicit parental values and perspectives, present and observing these families, diverse collection of hopes, making sure that we always have clear expectations, referring back to the original benchmarks at the onset, at the beginning of the conversations that we can refer to throughout the process will really help clarify that, and then of course recognize our own limitations. I think these proposed communication frameworks and rubrics might be helpful, but with a couple of caveats that I mentioned, and again, the importance of assessing and testing frameworks prior to implementation to clinical practice. So that's it for now. I'm really happy to take questions and thoughts about any of what I've mentioned today. So thank you so much. Christie, thank you very much for this very thought provoking talk. You know one thing that occurred to me as you were speaking is you're quite right that this hospital is based on really pushing the boundaries of therapy and many of us do that. But that results as a doctor patient interaction between someone who is fervently involved in their own pushing of the boundaries and could even be a zealot in a sense. And you have this interesting interaction between a potential zealot and a family. How do we overcome that and how do we reach an equilibrium as to what really is possible? I think that's a great question. Thanks. That's a great question. We do see that in the inatology as well. For example, I'll go back to extreme prematurity as an example and pushing the boundaries of limited viability and resuscitation at 22 weeks, for example. Some say what's next 21 weeks? There's lots of debate around the country about what's best, what ought to be done rather than what can be done and pushing those boundaries. But I think it's up to each society organization group to really talk about that and recognize those and come to some agreement on consensus about policies and guidelines going forward. That's not been capable. It's not been achievable at the national level in terms of extreme prematurity. But for example, the AP recommends each institution coming up with their own guidelines. But I think I would say as a group coming to some agreement consensus about whatever proposed therapies to make sure that everyone's on the same page, at least within the institution is a good start. That's always, it can be a little bit of a slippery slope because everyone wants to push the next, the batteries, merging technology, for example, and achieve these results. And if we don't, how else are we, if it's a self fulfilling prophecy, if we don't, everyone will never know. But we need to actually also make sure that we record and research this and so that we're we know the available data to support, to support our continuing efforts. Thank you, Kirstie. One question I had is, have you noticed or is there any literature on what parents express their wishes or their goals are to different, quote, provider groups? Like do they express something different to the NICU, to the surgery team? Are we perceived as fixers and they don't want to, you know, do you have you seen anything different or do you think the goals are uniform between who are who ever speaking to them? That's a great question. I don't, to my knowledge, I don't know any literature on that, but that's a great question. We do see that anecdotally in practice, not just between specialties, but also between families. What they'll say to nurses in private conversation, private conversation and what they'll say during family meetings might differ between couples and that can actually be a problem. I don't know of any, when looking at that, but that's a great idea to try to take a deeper dive and look at that. Thank you so much.