S5 - Episode 3 - Advanced Care Planning in Paediatrics - [Guest: Dr Daniel Dorevitch]

[Music] Hi, I'm Nim and this is a Spring Full of Medicine, topping up your pediatric knowledge once been full at a time. This is episode three of three with Dr. Dan Doravitch. In part one, we talk about the importance of communication and how to get better at it, and then in part two, we discuss all things pediatric palliative care. So if you're interested in those, check them out. In this episode though, we'll be talking about pediatric advanced care planning. We'll look at how to broach the topic, what exactly it entails, how does it differ from older or adult advanced care planning, and how to do it in pediatrics. So it's a high-yield episode and I hope you learn just as much as I did while talking to Dr. Dan. Let's go. Thanks for having me back here, Nim. It's lovely to be here. I guess I thought we would start maybe this episode with a case study, and this is a case dash. It's not a real case, but it's certainly one that reflects some of the things that I've been like enough to learn from some fantastic teachers in pall care services both in Victoria and Queensland, and takes you through some of the complexities that are involved in advanced care planning for complex pediatrics. So I'm going to throw you a case and we'll call this child Ravi. This is a three-year-old boy. Ravi was referred to the pediatric services originally with global developmental delay. He was found to have profound motor delays that were evolving and eventually met the genetics and the neurology teams as part of this workup. He was diagnosed eventually with juvenile baton's disease, which is a progressive neurodegenerative disorder. He eventually continued. He had progression of his symptoms with auremota and respiratory and neurological dysfunction with lots of myoclonic jerking, particularly. And let's say he had progressive introduction of pharmacological agents like Gava Pintin, Clonazepam, Clonardine, and slowly but surely over the course of a year, these were all uptight to manage his clinical situation. Forward thinking with this family works quite challenging and they'd say things like we pray for him constantly, we can't believe this is happening to us and then there might be silence in the clinic room when we were seeing him. And I guess I wonder to you, what do you think if this child came in to hospital acutely unwell with that kind of story? Where does your mind go? So I guess my mind is sort of thinking about a few things, some acute, some sort of forward planning and thinking ahead of what situation or issues may come up with time. So acutely I'm thinking well trying to get an idea of what his current functioning and what is quite a great baseline would be and then how significant this deterioration it is acutely. And then also what sort of care the family wants in an acute deterioration sort of situation. So more kind of what we say sealing of care but also their preferences on how things are done so if they want to be able to support well what is that kind of extended to? What are their preferences for IVX? So that's that sort of thing. And then moving on from there thinking ahead not knowing if he's a situation something that he'll come back from or something that he's a progressive worsening of his disease. What sort of things we need to be thinking about ahead of times the family aren't in a significantly distressed state when things emerge they can be a bit more preemptive and expect the unexpected so it doesn't come as a surprise and a last minute effort to make decisions. Absolutely I think if you hit the nail on the head it's really tricky to make decisions about putting drips in or not starting respiratory support or not going to ICU or not. Those things are really hard to do in the heat of a moment when you've got a sick child in front of you. They're hard for you as a clinician and they're really hard for a loving parent. And so the key often as much as we are able is to try and plan out for those kind of situations in advance. And that is what we call advanced care planning and that's what we're talking about today. I know that you've got a lot of listeners who don't exclusively work in pediatrics or who might be doing a bit of pediatric and adult work or who are hoping to get into pediatrics long term but still working in the adult world. And so I think clarifying a bit around advanced care planning and it's differences between the adult and pediatric world is really helpful so we might start there if that's okay. And the first thing I would do there is to distinguish between two turns. One of which is advanced care planning and the other of which which will be very familiar to some listeners is advanced care directive or an advanced health directive depending on the state that you're in. Which is something we hear a lot about when we work in adult medicine and I know as a resident adult care that's a term we always use and something we all try to like make and create with the patient. Absolutely. But ultimately those things are very different and I'll tell you why. An advanced health directive or an advanced care directive is a static document. It's a legally binding expression of values and treatment preferences made by an autonomous adult which is to be enacted by health practitioners who are caring for that person in the event that that person no longer has decision-making capacity. So it's a decision made and written down and kind of notarized at a particular time which represents a person's views at one time for their own health care in the future if they can't make decisions for themselves. And that's really important in the world of adult medicine where autonomy is really crucial. That's a really important idea so that you can give your clinicians a sense of what you might want if you can't decide for yourself. Advanced care planning is a little bit different in that it is a process and of course that's an umbrella term like under the umbrella of advanced care planning you can write an advanced health directive. But advanced care planning is a process of discussions between family, a patient and health care providers about their preferences for care, treatment and their goals in the context of the patient's current and anticipated future health. Of course it's not a legally binding document it's in what we call in positive care and iterative process like it has multiple iterations so it's layered and it evolves over time depending on the situation and the clinical needs of the patient. So to go into a little bit more about the difference between adult advanced health directives and pediatric advanced care planning just think to yourself an advanced health directive is made by a currently competent adult who is making decisions for themselves and not necessarily having a medical decision maker that's been legally appointed. They're envisaging a process in the future a time where they've lost competence and they're deciding what their goals and values are and of course it is time sensitive and need to be done before the adult competence is lost and then the job of a proxy in that situation is to make decisions in accordance with that now no longer competent adult wishes I guess. Pediatric advanced care planning of course is very different so in pediatrics you have a child who never is considered legally competent in terms of their decision making and is always perceived to be medically vulnerable in that sense so they have a legal, a legally recognized decision maker already in place that's their parental guardian and of course they are also envisaging foreseen or predicted major medical events that are likely to need addressing. It's a decision making process about what might be in the child's best interests and for that we use we can use kind of ethical frameworks like the zone of parental discretion and thinking about best interests of the child but of course it's less time sensitive although it's helpful to plan ahead in the event that a someone a child is critically unwell they still have that decision making surrogate in their parents or guardian there to make those decisions like we were saying before of course it is better if those decisions are planned in advance but they don't have to be decided in a binding and certainly not a legally binding way. When you're comparing adult to pediatric advanced care planning of course the adult world is very much about respect for patient autonomy that's one of the highest priorities and certainly something that I've encountered when working in adult palliative care this year but parental autonomy is not absolute it's not quite the same as patient autonomy and I mentioned the zone of parental discretion before that's an ethical model where we think about whether a parent's decision for their child's care constitutes hub or is in the best interests of the child or somewhere in the middle where you or I might not make the decision for a child but it is still a reasonable decision made in a reasonable way by the exactly and so that's considered being in the zone of parental discretion and so that all of that kind of comes into this a little bit ultimately in terms of the goals of advanced care planning from an adult perspective and advanced health directive is to preserve autonomy for a time where their ability to make decisions may be lost whereas in pediatric advanced care planning we're thinking about aligning care with family values wherever possible so it's not just about one person it's about how this child fits within the unit of their family we're trying to ensure that the patient and family understand the medical reasoning behind the decisions where aiming to allow thinking and discussion to occur ahead of a crisis point and although of course that is the same in adult events care planning and it also might be something that can help to avoid interventions that subject this child to an undignified death, prolonging suffering or create an additional source of distress for grieving parents. So now that we understand what advanced care planning is and how that differs from adults and kids and how that differs more importantly from advanced health directives, it seems at least conceptually so obvious to make one to plan ahead and it's kind of easier said than done. So when the benefits of it are so clear why don't we do it as often what stops us? Such a good question and certainly in palliative care we try and encourage this often but I think we find that there are both parent and clinician factors that stop advanced care planning from progressing as we might like it to. From a parent perspective of course you have to remember that this is not the same situation as the child of a 95 year old who's lived a good life in inverted commas and is more accepting of their demise. These are the parents of a child who shouldn't be going through something like this. This is an unfilp perceived to be an unfair unnatural tragic situation and so parents often don't want to engage in thinking ahead because it's acknowledging a tragedy that they can see on the horizon but absolutely don't want to engage with on an emotional level as you could imagine. So often there are parental factors around distress and anxiety and the emotions that come with thinking about what might be coming next. They may have expectations that don't meet the expectations of their clinicians or hope in fact that things will get better and often like I said there's a lack of readiness to have that discussion but I think as much as their parent factors there are often clinician factors. It's the trusted long-term specialist clinicians be there general pediatricians or specialists all long beloved and connected nurses that aren't sure when is the time to start thinking about advanced care planning and so they don't necessarily do it. It's hard for a clinician emotionally to say hey maybe we should be thinking about these kind of things because they're on the horizon. They are concerned often and we hear this that clinicians are concerned about taking away hope from families by engaging in advanced care planning. They themselves clinicians have uncertainty about prognosis it's hard to know what direction this is going to go and what time frame and therefore is it cruel to be having these conversations if if the prognosis is uncertain and just not knowing the right time to broach it how and when and often not having the skills or the communication experience or confidence in your ability to engage in advanced care planning and I hasten to add that that is not a universal experience. So many brilliant clinicians do this absolutely phenomenally and they're like more do it brilliantly than do it but some absolutely feel less confident in those skills and sometimes I think building on from that idea because certainly when I reflect on cases I've seen you have a lot of trepidation in one side to kind of change the direction of care and it feels kind of you don't want to fail a patient and first of condition you so much of our training so much of our learning is about fixing things and so that sort of change in trajectory or angling can be the hard one to suggest but also sometimes and often you notice this when you're not on the front line or you're not in amongst it is there can be so much happening so much acute care happening whether it's you know the ICU medications all that sort of stuff and it's just such a flurry and that someone kind of that's a bit more behind going actually what is the point of all of this should we be thinking about something else rather than fogging a dead horse for a lack of a better sort of say yeah what's the bigger picture I think you're absolutely right and the other thing I would add to that it is interesting to hear you talk about failing patients and also to talk about changing directions because I think absolutely there is a time there comes a time where at some point there is no longer any disease directed therapy that is going to be in the child's best interest and we take a we kind of shift gears to what we call best supportive care thinking more about comfort cares but the key with advanced care planning is actually it starts a lot earlier it's not about shifting gears and as we'll talk about later it's actually about understanding the gears and understanding what a family wants how they take how they work as a unit and what is important to them and you build on that to get to a point where you can then have discussions around directions of care from there we'll talk about that a little bit more later on so Dan we've talked a bit about what patient and clinician perspectives are and I guess the things that we've noticed as well when we have been involved in cases that have been complex and involved advanced care planning but what does the evidence out there say what does a research have to say about this space? I think it was really interesting that you mentioned failure before and I touched on this earlier but I think there was a great study it's old now I was done in 1998 but there was a survey of pediatric trainees and pediatricians at tertiary center in the US and that survey showed that 73% of physicians sometimes viewed the death of a patient as a personal failure and 90% of them expressed an iterate added support in dealing with death and dying and of course I'd like to hope that that 90% number is now lower in the 25 years also that's passed since then I do think and interacting with specialists and pediatricians it seems that many of you death of a patient as a personal failure and carry that with them and that's born out in the evidence from a parental perspective there was one study that showed nearly half of parents had thought about withdrawal of ICU treatment before the option was raised by the pediatrician so parents are thinking about this stuff even if they're not talking about it or not being given the space to talk about it and and there was a Swedish survey that was done of parents of children who died with cancer and of 258 parents who didn't talk with the child about death 27% of them regretted it or more and more likely to have regrets if they felt the child was aware and of the 147 that had talked with their child about dying not one of them regretted doing so so from there's some interesting evidence around from a parental perspective when we know from a child perspective that survey again of children with cancer in their kind of primary to high school years the majority of children wanted to know their chance of a cure 95% of children want to know if they're terminally ill 28% of children wanted to know and have the opportunity to discuss things with their doctor that they didn't want their parents to know about and this just shows us that children desire input into their decision making and it ties back to some of the stuff we spoke about in our earlier podcast together children know they understand oh they know so much more than you think they know and they have more opinions and you think that they would exactly right and so I think we can see from a clinician perspective from a parent perspective from a child perspective advanced care planning is really important to connect clinicians and families and to give everyone a chance to talk about where they think and worry that things are heading so now that we know about advanced care planning and pediatric the thing that can be challenging is what is the doing like on the ground when you have a case and you think we need to start having these discussions what are the steps what are the tools how do we go about discussing this with families and getting a really patient-centered plan in place it's a fantastic question I think the key here and what I always teach people is it's easy to think of advanced care planning as writing an advanced and acute resuscitation plan when things are really pear-shaped and that is not the whole entity of advanced care planning I often think about advanced care planning within the framework that I was taught in Victoria the Victorian pediatric power-dative care team and others developed a brilliant what's called the thinking ahead policy which is an approach to the advanced care planning process and it provides some triggers for advanced care planning in pediatrics it gives a framework a series of conversations and suggested questions and goals of key documentation styles it's got a discussion guide a companion policy document and an app as well and it's really well set out the other fantastic resource is is colloquially known as the green book which is a pediatric palliative care set you can come as a book but you can also get as a free PDF online and that's been developed by palliative care Australia and has been through a number of different additions as well so really some really fantastic resources available we touched on research before and and Sid Vermeurie is a palliative care clinician Victoria who's also done some fantastic research into the complexity that goes into advanced care planning and the shared decision making from a clinician perspective But your question is a good one. How do we actually do it? The first part of that process, I think, is to step back and to think about where in their phase of life limiting illness is this child up to and then to appropriately engage in the advanced care planning phase that matches where they are. And we generally break it up into three phases. The first step one is living with a life limiting illness. So diagnosis of life limiting illness and living with that process. The second step, step two, is when that child is in a current or potential future deterioration phase where things are changing. And step three is closer and will end at life. And each of those points has a very different approach to the advanced care planning, kind of mechanism that you would use over time. If you get the chance to do all three in that like a really nice iterative way, ideally with one trusted clinician, that's really amazing. But of course, if that's not available, sorry, you're not able to and you have to step in at any different point, then understanding where you are in that phase of illness model is really useful. So Dan, if we start with step one or phase one, where a person has been diagnosed with a life limiting illness, what happens there more specifically? So I guess the purpose of advanced care planning at that phase is really to build a solid foundation for future decision making and to help a family think about what is important to them. And this can of course be done by any doctors, nurses, trusted clinicians. But say in this situation, let's use our example of a general pediatrician who is working through this kind of process, often to start within a clinic environment. And this is the opportunity that you have to ask some questions that are really open-ended, really broad, really exploratory to get a sense of what this patient's life is like, what they mean to their family and how they fit, and what is their understanding of where things are up to and where things are going. So the kind of questions you might ask, "Tell me about Ravi, or what's your understanding of Ravi's illness?" or, given this, what's most important to you? What are your hopes? What are your fears? A really good question that I love is, "What keeps you up at night?" It was a fantastic question, I know, from one of my Victorian colleagues. And also finding out about them as a family, where do they get their strength? How do you or your child find your strength, given all of this? What do they enjoy? What do they love out of their play? What kind of things give them the best quality of life? And when you think about the future, what is most important? What are your hopes and your goals? That's some really helpful questions and types of questions there that you often you want to know the answers to, but you don't know how to approach them. So giving us those very discrete examples, I think, is very, very helpful, so thank you. And I think we're so tempted to, like, we see a patient in general, pedagogy clinic, we're so tempted to plot their growth, talk about their development, talk about their nutritional status, and like, make a plan for our next appointment, plus or minus nutritional bloods that we don't think, like, let's get into what this child's life is like, and what does it mean? Now if we move on to step two, this is when the child has a current or potential imminent deterioration. Tell us a bit about what is involved here and who and how do we go about it? Absolutely. So I think here is a really important opportunity to do what we often call pushing the boat out, like giving a little nudge to see where things land and where our family is up to, given that we can see that things are changing, and we want to know whether the family shares that understanding, whether they're in a different kind of cognitive state. Often, again, it doesn't have to be done by a doctor, but often it's doctors, nurses, trusted clinicians who can explore those family values and priorities and hopes, but also understand where they're up to, given that things are changing. And sometimes this is a reflective face, like questions like, I can see that things are changing, what do you think? Or it seems like we're seeing you in hospital more often. How do you feel? What do you think? And of course, the point is always to support this family, but it's also to help them start thinking about future scenarios and future decisions that might be important. Often it's important when there's risk of deterioration to ask yourself, would I be surprised if this child died within a year? And that's a really good trigger for a referral to palliative care. If you think this child might die within a year, then linking to your local palliative care team can be really helpful. And if the answer is no, I wouldn't be surprised also thinking more about exploring this phase two section and also moving into phase three. In terms of how you do that, in this section two part, you're exploring the family's understanding. Again, you might be describing possible scenarios. So I wonder what you would think if Robbie becomes sick again. Last time he went to ICU, seemed like a pretty unpleasant experience. What do you think about that? What happens if he has another episode of X? And based on those scenarios, you're exploring their values, their hopes and their fears. A really good question that unlocks a lot of answers from families is often, if time was shorter than we hoped, what would be most important to you? And exploring thoughts around where they might like to be in the event of deterioration or even the event of death. So would you want to be at home? Would you want to be at hospital? Might you want to be in a pediatric hospice environment? Are there any things that you particularly want to avoid? Are there things that you're really worried about or anything that you might want to do? And some great questions, again, this comes from the thinking ahead framework, but some great questions that you can ask, explore the struggle that parents go through of what it is to be a good parent. For example, many parents tell me how they feel caught in a dilemma. On the one hand, they want to give their child every chance to survive. And on the other hand, they don't want the child to suffer. I was wondering if you might feel that way as well. And you can see how that question normalises both ends of the spectrum and just gives them the opportunity to tell you what they think. Similarly, using hypotheticals can be really helpful. For example, I really hope that this intervention is successful. But if there were ever to come a time when Ravi was deteriorating despite all of our efforts, have you had any thoughts about how you might want that time to be, for example, where you might want to be? And of course, a classic in palliative care is the head and the heart concept. So many parents tell me that in their head they understand how sick their child is, but their heart tells them not to let go. Is that something that you're feeling? And that's a beautiful question to just normalise a hypothesis that you might have about where they're up to. And this section, of course, step two, this section is harder and it's braver. And it takes time. Big time. Absolutely. I often frame these kind of questions flag, the kind of questions that I'm going to ask. So, Nim, I'm going to ask you a brave question if I can. Is that alright? And then they sort of not worrydly you. And then you're able to ask them the questions. Because I think being really gentle is so key. And asking hard, brave questions is important, but you have to do it in a way that is caring and gentle in a situation that you know is devastating for them. And also, I think it's important when you ask those questions to give people the time they need to get to the answer. Whether that's days, weeks, it depends on case to case. And the answer to those questions can be very different the first time you ask it versus the next time you've asked it. And that's okay, everyone's human and they take time to go on that journey. Absolutely. That's something that I definitely have learnt over time is it's okay to ask questions again, it's okay to broat a topic again. And I would say tell the parents that you're going to do that. So, sometimes, so firstly you've just described that iterative process that I was talking about, that layered multiple iterations process that's exactly what we think about, advanced care planning. But secondly, tell the parents that, say, this is a hard conversation, we can come back to it another time, or last time you mentioned X, Y and Z, I wonder if we can take that a little bit further. Or you say these conversations are layered and they change over time. And it's okay for you to change your mind because we're going to keep having these conversations as many times as you might want. And I'm here with you all the way along as that gets harder if it does. Like showing that you are there partnering with them, that you are being brave with them, and that you're working together to think ahead about how you might manage this really difficult situation together. Just gives them a sense that you really, you're in the boat with them. Now we're up to step three, which is when we're coming up to the end of life. Can you tell us a bit about the who, what, where, and how of step three. So, as you mentioned, this is coming towards the more pointy end of things, either there's current or future real potential for you. for active occuted duration or if the child is actively dying. And ironically you're asking me to tell you about it, but I think this is really the part that particularly junior doctors are more familiar with. This is their right up to the occult resuscitation plan, what's kind of inverted commas ceilings of care, although we hate that term because there is no ceiling of care, there is only ceilings of medical intervention, the care is all way through and beyond the child's death. But in terms of who and when and what, of course the one we've touched on already, the who is more senior medical staff, so this is something that always leads a more senior clinician to be involved with, it should never be an internal or junior resident's job to do and document on their own. And the purpose of this phase is to document the agreed goals of care and decisions about specific interventions, and particularly to us is to new clinicians that might be involved in the child's care and prevent unnecessary repetition of difficult conversations. That's exactly as you're aware of, that's documenting thoughts around the more intense interventions like CPR or intubation, it's thinking around levels of respiratory therapy that may or may not be appropriate. It's numbers or clinicians involved in intravenous attempts, it's locations of care, by which I mean intensive care or ward based or aiming for home and all of those get documented in the child's medical notes. Of course every state has a slightly different way of documenting them, so I won't go to this specifics, but needless to say it is a formally documented set of preferences for care in the eventual acute deterioration. So now that we've learnt a lot about advanced care planning, if we circle back to Ravi's case, how's he going now? So since he was diagnosed with baton disease, he had a number of admissions to ICU with aspiration pneumonia, often needing intubation for several days, and clearly things were getting worse with more frequent admissions. His family brought him into ED, but this time when you meet him, his dad quietly says to you, I hope they don't have to take him to ICU again. So what does your mind go when you hear that? It tells me that they've moved on from there, kind of where they were sitting on the journey of his disease, as well as their ideas about thinking ahead and thinking for their future. And although it's very sad that it's clearly deteriorating, it's an opportunity for us as clinicians to now support the family and really help them into the kind of new phase. Of caring for Ravi. Their thoughts around his care have been shifted by his experience, and we have to give him and them credit for that as time goes on as we do with any child and family. I guess the thing to think about here, of course, is we've in the example of Ravi that we've been using, he's a three year old with a neurodegenerative disorder who's not going to be vocally expressing thoughts about his own care. And consider for a second the example of a 14 year old with a osteosarcoma who is in a completely different situation. They're a complete, they may be neurotypical. They've had a year's worth of challenging diagnosis and treatment to get to this point or maybe more, but they have strong opinions about their own cares and thoughts and kind of where they might want to go. And so some of this requires what we might call shuttle diplomacy, which is where you, as a clinician, are operating between different players in this space. So that might be the child and the parent and another clinician perhaps to support that process and bridging those gaps, giving spaces for both the child and the caregiver to feel heard and respected and allowing each party the opportunity to know each other's perspective. And it really aims to mitigate the risk of missed opportunities and regret about things that weren't told to each other. So getting a sense of how you can assist people who might not be talking to each other about their fears, how you can bridge those gaps is a really important part of our landscape planning. And with that, it's up to a recap. So Dan, we've talked about a lot of things today. We've talked about what advanced care planning is, how that differs in adults to kids. We've talked about how to broach the topic of advanced care planning with families as well with other clinicians and what may hinder both parties from talking about advanced care planning. We've also been introduced to a framework that I will link in the show notes with three key steps. One being what to do and what to discuss when a diagnosis of a laugh limiting illness has been made. The second step being when there's current or real potential for deterioration. And then the third step being when end of life is more imminent or closer by. And I think I would just close with a beautiful metaphor that I learned when I was training in Victoria. One of the clinicians there shared that she likens our role in advanced care planning and supporting these families going through this journey as being like being in a little boat with them. Imagine yourself in a little row boat. Sometimes these families need a captain of the ship. They need you to take charge and tell them where things are going. Sometimes they need someone to like bail water out when it feels like the boat is sinking. Sometimes they need you to like hold an or and row with them and be with them on that journey as equal partners. And sometimes they just need you to sort of stand there with your hand on their shoulder, reassuring them that you're there and you're next to them. And I think nothing could summarise our role in advanced care planning better and more beautifully. And that's been this week's episode of The Spring Full of Medicine. Thank you so much for joining us. If you like what you heard, please subscribe and tell a friend. For the visual learners of us out there, head over to our Instagram page at www.sprinful.ov.medicine for a quick summary of today's episode, along with some other great educational content. If you'd like to get in touch, have a suggestion for a future episode or have heard something that you think needs a correction, please email us on www.sprinfulofmedicine.com at gmail.com. It's been a pleasure to have you up here at the Aschignolid, one spring full of time. I can't wait for you to join us on our next episode. But until then, bye! [Music]