Sharon Meadlow [00:00:05] Hi everyone. Welcome to the October WH&Y webinar. We've unfortunately encountered a couple of technical difficulties and our host Philippa Collin hasn't been able to get in, so I'm jumping in. I'm Sharon Medlow. I'm the Research Translation Coordinator for WH&Y and I'm really excited to be welcoming Ursula today. Before I do that, I'd like to acknowledge our funding partners at our partner universities across Australia. I'd also like to acknowledge the traditional owners of country throughout Australia and recognise their continuing connection to land, waters and culture. We pay our respects to their elders past, present and emerging. And today I'm joining from Dharug land. It would be great to see what lands you're all joining from so put that over there in the chat. We'd really love everybody to come and check out our community of practice. We just launched this section of the website fairly recently and you can find our past and upcoming webinars there and also a huge library of resources. A little bit of housekeeping.  Your microphone and video are turned off. But we really would love it if you just put something in the chat, say hello, let us know where you're coming from. And that's also the place where you can enter your questions and Ursula will answer those questions after the presentation. 
 
Dr Ursula Sansom-Daly [00:01:33] So here's Ursula, very, very excited to have Ursula on today. She's a Cancer Institute, New South Wales Early Career Fellow, Senior Research Fellow and Deputy Head Behavioral Sciences Unit at UNSW. This is the largest psychological research group in child and adolescent cancer in Australasia. Ursula is also the clinical psychologist for the Sydney Youth Cancer Service, which is a leading team in the treatment and clinical care for adolescents and young adults with cancer. Ursula's focus is on applying evidence- based psychological models and methods to understand and address the mental health implications of cancer among adolescents and young adults with cancer. So welcome, Ursula, and we're really looking forward to hearing what you have to say. 
 
Dr Ursula Sansom-Daly [00:02:22] Thank you so much. I'm thrilled to be joining you all. And I'm excited to see as well that we have some international people listening in from Norway and Myanmar. That is so exciting. So thank you for coming online. I am Ursula and I'm going to be talking about how we can do better at difficult discussions with young people with serious illnesses today. And this has been an emerging research area and also a clinical passion of mine for the last few years. And I also want to briefly pause to show my respects and acknowledge the Gadigal peoples of the Eora nation who are the traditional custodians of the land I'm dialing in from and extend my respects to elders, past and present, on which this meeting takes place and from the many traditional lands that we're dialing in from. 
 
Dr Ursula Sansom-Daly [00:03:13]  I also want to acknowledge that what I'm going to be sharing today things that I've learned from and gathered wisdom from many amazing collaborators and mentors and clinician researchers in the field who I've been fortunate to learn from and be influenced by and even collaborate with some of them. And hopefully some of these names and faces may be familiar to some of you, but just some amazing people working in this space as well, so I want to tip my hat very heartly to all of those people. 
 
Dr Ursula Sansom-Daly [00:03:47]  Today the focus is going to be thinking about developmental considerations on having difficult conversations. And in preparing this talk, there are so many difficult conversations that we can think of. But I've focused today on the sort of difficult conversations that can be important and relevant when it's not clear that a young person's illness is curable or it's not clear how treatment's going to go. So we're kind of going in the terrain of some of those palliative care conversations, but fully acknowledging in the world of adolescent medicine and adolescent health, there are so many different kinds of tricky conversations that can be important. Hopefully some of what we talk about today will still have broader relevance across those different topic areas as well. 
 
Dr Ursula Sansom-Daly [00:04:32]  I'm going to be focusing particularly on some of the implications for clinical practice from the research and being a clinician researcher myself, that's something I feel very strongly about that whenever we're doing research, we need to be looking at how we can bring that into clinical practice as effectively and as rapidly as possible whilst following evidence-based practice to the extent that we can. 
 
Dr Ursula Sansom-Daly [00:04:57] And I want to introduce you to some new and emerging tools today as well that can help support some of these conversations and think about what next and what we still need to do in this important area. I wanted to mention a couple of caveats at the start. So my focus is on adolescents and young adults and so that’s what  the research and the data that I'll present on today primarily focuses on. I have some data on parents as well and we always need to be thinking in the context of the family unit as well. But I would say at the moment the research has mainly focused on adolescents and young adults. The other thing that I want to mention is that a lot of the data that I'll present today has more focused on the medical side of communication in the health system. But as I'll talk about later, it's really vital that we have the whole multidisciplinary team involved in these sorts of conversations. And I'll talk a bit more later about how that could look and how that could happen. But I'd say some of the research to date has tended to focus more on some of the conversations that can be led by our medical colleagues, which is a really important part of it, too.  
 
Dr Ursula Sansom-Daly [00:06:13] Everyone here already knows without me going over it really that adolescents and young adults are a special group. And we know that for a young person getting any kind of serious illness, particularly one that could be life altering or life threatening in nature, is you could think about this as being developmentally incongruent. So what do I mean by that? Essentially that it's not part of the typical life script of a 16 year old or a 25 year old. Most of them are walking along in their daily lives, going to school and hanging out with their friends. Most of them aren't expecting to suddenly be diagnosed with a really serious illness. So what that means is that it's kind of at odds with what they would be expecting to encounter in their lives. It's quite rare, relatively speaking. And it also means that they are unlikely to have many friends at the outset who have been through a similar thing. So unlike someone in the later years of life, 70s, 80s, 90s, by that time of life, it's quite common that you might know or might have observed other close friends and family who've been through serious illness experiences. Young people don't so much, have that life script and that kind of framework to understand it and fall back on. 
 
Dr Ursula Sansom-Daly [00:07:28] We also know from the psychological perspective that the adolescent and young adult years are already the peak time of the age for the onset of mental health disorders to emerge. So cancer and illness aside, the teen age and the young adult years are the typical time when we would most see people's anxiety, depression and those sorts of things first emerge. And so that means that we need to just bear in mind how the illness experience interacts with that and how it layers on top of that in thinking about our psychological care and support of young people. It doesn't take away from their resilience, but it just is a factor that we need to think about. 
 
Dr Ursula Sansom-Daly [00:08:10] And from a systemic perspective, we know that adolescents and young adults do straddle the pediatric and adult health systems in Australia and many or most places in the world, really. So here at Sydney Youth Cancer Service, that position involves me being across the children's hospital and the adult hospital next door to be able to look after those young people. And the practical impact of that is that we have young people dispersed across different settings and in any one given setting they can be a minority, so there isn't necessarily a huge or critical mass of them. And what that can also mean is that in any one given setting, they may not necessarily be the kind of primary focus or the primary population that the health care teams are focused on caring for. So that an adult oncologist may not see that many 20 something year olds compared to the number of 40, 50, 60, 70 year olds that they treat. And likewise in the children's hospital, the teenagers are just a portion or a fraction of the broader child population. So that has implications for when we're thinking about how prepared, how ready, how skilled, how confident health professionals feel in taking care of young people. And when we come to the pointy end of care, when things are tricky and when discussions are harder, that can sometimes be where those challenges emerge, where it's, you know, maybe challenges in not knowing or not feeling confident about the best ways to provide that age-appropriate care. 
 
Dr Ursula Sansom-Daly [00:09:43] This is a quote that I often come back to, and it's by David Frye, who's a palliative care physician in Canada, I believe, and he's written before that for the seriously ill adolescent or even the dying adolescent, for them, adolescence is a paradox of emerging capabilities and diminishing possibilities. So it's that juxtaposition or that kind of duality of adolescence being on the one hand, a  time of enormous opportunity and flourishing and growth and looking to the future and planning your future life lives. And at the same time, the ways in which illness and serious illness can close some of those doors and windows temporarily and for some longer term. And so I think thinking about this from a developmental perspective, we need to situate ourselves in that place that adolescents would normally be very much future focused and planning their futures. 
 
Dr Ursula Sansom-Daly [00:10:40]  I put this picture up because I think it's worth reminding ourselves about how much of a foreign land the health care system can feel like for adolescents and young adults, especially. For example, I work in cancer, and if a cancer experience may have been the first time that they've been diagnosed with something quite serious, quite life threatening, it might be the first time they set foot in a hospital. And unfortunately, we know that some parts of our adult hospital still look a little bit like this. Some waiting rooms, young people are going to be, you know, less than half the age of the next youngest person in the room with them in the adult system. And so let's think about what's the experience of that for the young person, how isolated they might feel, how well prepared they feel to navigate that new terrain, to speak the foreign language that the doctors and the nurses seem to be speaking. What's the impact going to be on their stress response? And all of that is a really important context for us to be thinking about when we meet with young people and approach them to talk about any aspects of their care. 
 
Dr Ursula Sansom-Daly [00:11:47]  I think, you know, by now there's also a lot of research to show that there are multi-layered impacts for young people going through serious illness. And so we can start by thinking about the developmental impact of getting a serious illness at that time of life, at the time of life when they are going to school, planning for uni, getting jobs, developing romantic relationships, all those sorts of critical things. And then there's the layer of distress that can come on by for example, something like cancer being layered on top of that, how that halts life progression to those life milestones and life events, how that alters their sense of self and their sense of identity, their feelings about their body, their trust in their body. And then there's the health system piece like I was talking about before. So this foreign land that they find themselves in and the foreign land where unfortunately there can sometimes still be instances where young people can seem to fall through the cracks. And obviously in Australia and more  recent years, in the past decade, we've had, for example, the development of the youth cancer services, and that's kind of where I work, and that's mirrored developments in the rest of the world as well, where there's been this increasing attention on adolescents and young adults, and how do we provide them with youth friendly, age appropriate care. But still, we know that many young people live far away from hospitals where there might be a youth cancer service and so there are likely still some young people who do fall through the cracks and may not be necessarily receiving this age appropriate care. And we know that's the case overseas as well. 
 
Dr Ursula Sansom-Daly  [00:13:25] So let's dive in and think a bit more about having some of these difficult conversations with young people with serious illnesses. And we know some things already about what young people want, if it's the case that it's not clear whether their illness might be curable or how they're going to respond to treatment. Research over many years has already indicated that most adolescents are aware of more than their parents suspect. There was this seminal study by Myra Bluebond-Langner back in the '80s. And I think those of us who are clinicians are kind of aware that young people are pretty cluey as well. So that idea that you kind of you can try, but you can't hide much from young people, they're pretty switched on. And we also know from a number of studies that young people are actually quite capable of complex decision making as well. And that's perhaps something that increasingly with youth friendly cancer care and youth friendly health services, we may be giving young people more of that credit to be more empowered to actively take part in health decisions. But it's really important that we do give them that opportunity, given that they are quite capable of it or participating to a degree when they want to. 
 
Dr Ursula Sansom-Daly [00:14:38] Studies have shown that almost all adolescents and young adults, or AYAs, say that participating in advance care planning, so that's conversations about medical treatment, medical choices, and goals of care would be helpful. And I'm not sure whether that's a finding that necessarily everyone would expect. And we're going to keep diving into that. This pilot study, again, this was done almost  a decade ago now, and they developed a structured advance care planning guide for adolescents with cancer. And they asked them in this pilot what it was like for them to go through that guide. And 24% of the young people said, yeah, it was sad to have conversations, early conversations about the possibility of poor outcomes, the fact that their cancer might not be cured, but 71% said the conversations were worthwhile and 91% said they were helpful. And so I think that we can often feel quite worried or scared, perhaps even about this idea that we might make people sad or might make them upset. And I think this is just one study to show that some young people may feel sad and they may also find it worthwhile and helpful. And I think another point for us to consider is that maybe it's quite understandable that talking about some of this stuff is sad. It is sad getting cancer when you're 16 or 21 anyway. So I think it's important to be able to hold those two things in mind. 
 
Dr Ursula Sansom-Daly [00:16:08] I just saw a question on the chat there, I can answer that really quite quickly. Youth cancer services in Australia, that's 15 to 25 year olds, but the age ranges are  defined a little bit differently overseas.  
 
Dr Ursula Sansom-Daly [00:16:20]  What do we know about what parents want, and so many of you in adolescent services are also providing a lot of support for parents. And again, generally parents want more information than we may possibly realise or assume. These researchers have done some fantastic longitudinal studies where they've looked at what kinds of prognostic information parents have wanted over time. So prognostic information related to the likelihood the treatment will be successful, the likelihood that a young person may respond well or be cured. And so in this large study, 382 parents of children and adolescents, the vast majority of them wanted as much data on prognostic discussions as possible, both at diagnosis and up to 12 months later. So those preferences persisted. Interestingly, and this is a really useful table, I think, you can see here they looked at these preferences over time at diagnosis, at four months and again at 12 months, and they got to choose: I prefer not to hear a lot of details;I want to hear details in certain situations; or I want to hear as many details as possible in all situations. And you can see that at all timepoints it was a vast majority that wanted as many details as possible in all situations, and they looked further in their analysis to see what predicted wanting more information, and interestingly they showed that a young person having a poorer prognosis actually predicted the parents wanting more information at 12 months, not less. So it goes against the idea that bad news or things looking not great that a parent might be wanting to kind of not hear it and kind of bury their head in the sand. In this study, it was not the case. And what they were able to show is that the degree or the extent of earlier prognostic discussions was the best predictor of parents' satisfaction with care at 12 months. How detailed and how much context they were provided in those early discussions was really important. And so I think that what that tells us is a couple of things, that those sort of day one or first week, first fortnight just diagnosis and staging discussions there, they're very important. They obviously leave a mark in an ongoing way, but they're also not enough. And so parents continue to want more information over time, which makes sense because cancer, like any illness, is quite dynamic and long term. 
 
Dr Ursula Sansom-Daly [00:18:59] So, why do we need difficult discussions? We haven't addressed that point yet, but why would I be bothering to talk about this in the first place across a number of studies? We know now that not talking about these conversations can lead to some poor outcomes for adolescents and young adults themselves that can lead to them having poor anxiety or worse anxiety, pain that's potentially not managed as well as it could be, not dying where they wish to. Now that one is an interesting one because I think in the literature we actually don't have much solid data to indicate strongly where adolescents and young adults typically prefer to die. And of course, all of these things are very individual anyway. Anecdotally, certainly we know that some adolescents would prefer to die at home, as would some adults, and we've also had the case in our clinical practice that we have some young people who form really strong, long standing bonds with their youth cancer service, and it's actually been their preference to die in hospital. But regardless, if we don't have the conversations, we can't know what their preference is. And if we don't know their preferences, we can't actually plan and put things in place in enough time to make sure that that happens. So they do remain at risk of not dying where they wish to or they would prefer to, and there's a risk of them dying in a state of emotional isolation. So really just the sense of, you know, them not feeling like people knew where they were and what they were feeling and thinking about everything. 
 
Dr Ursula Sansom-Daly [00:20:31] There is also some data to show that parents can be at risk of regret later on. So when the adolescent is older and when the adolescent has known what was going on, that parents can be concerned and have regrets if they haven't been able to have those conversations with them. And again, I think we need more data, but I think we could be concerned that if parents are left with these kind of concerns and regrets, that maybe we're going to be placing them at greater risk for things like complicated grief, or prolonged grief later on for them not having been able to have those conversations. 
 
Dr Ursula Sansom-Daly [00:21:12]  I've talked about adolescent preferences and parent preferences, and I think it's really important to note that they can be quite different, that parent perspectives and adolescent perspectives are not necessarily the same. And this is why it's really important that we can't just use one like a parent's perspective or decision as a proxy for the other. And so this paper is a really excellent read, it was out in 2020, and they did a beautiful study looking at the congruence between adolescents with cancer and their families regarding a whole number of different things that relate to their values, their goals and their beliefs around end of life care. I actually just want to quote the paper directly because I think it's quite powerful. "Family members' understanding of their adolescents' beliefs about the best time to bring up end of life decisions was poor. 86% of adolescents wanted early timing, say before getting sick, while healthy, when first diagnosed, when first sick from a life threatening illness or all of the above, but only 39% of families knew this.", So 86% wanted it and only 39% of families knew it." So I think that kind of highlights why it is really important that we're hearing adolescent voices and young adult voices directly from themselves, that we're not kind of trying to infer or guess or get a hunch from mum and dad, but we actually find the ways to make space to hear the adolescents voice for themselves. 
 
Dr Ursula Sansom-Daly [00:22:40] And I've talked about some of the risks of what happens if we don't have these conversations. But I think it's also really important to think about what are the potential gains for having these conversations as well. And I know that a lot of people hear this kind of talk and feel it's quite doom and gloom, in a sense, there is some kind of, you know, stuff that can feel a bit more confronting in some senses. But having these conversations is the thing that enables us to help young people live their lives the way they want to. Whether that life course is going to be months away, weeks away, years away. This paper here is a beautiful qualitative study exploring young people's experiences and perspectives on what makes life meaningful for them. And we have to remember our adolescent and young adult patients are living their lives until the day that they're not. And so we've got all our different roles and all of our different professions in the hospital. But at the core of that, we think back to the start where I was talking about adolescents and young adults, and  this is a really burgeoning life stage where they should be doing so many different things and want to be doing so many different things? We need to put our health care priorities and kind of considerations in the context of how we can be helping young people to live their lives as best as possible and in the ways they want to, up until the day they die, whenever that is. So I think there's a lot to gain in terms of helping support young people to live well through having these conversations. And we can't help facilitate those choices around quality of life and how they spend their time and how we care for their symptoms if we don't know. 
 
Dr Ursula Sansom-Daly [00:24:32] So what do we know about what's actually happening? And this is data from the States and also from Australia. And we know that probably a lot of the time the conversations are happening too close to death and not well documented and they don't occur spontaneously. And this is one of the things I suppose as health professionals and perhaps early career health professionals particularly who may not have as much experience with this, can be quite anxious about the idea of bringing it up. But we know that parents and families aren't going to do that for us. So without intervention some studies have reported it might occur spontaneously in 3% or less of families who it would be relevant for. So families and young people are really looking to us to open that door for them. And I think in terms of thinking about the power dynamics in the health care system, I think it is still often the case, even in the best kind of shared decision making or patient centred models, there is still that power dynamic where parents, families and young people are often taking their cues from the team about the direction of things, about what's important for us to be talking about today, what's not relevant for us to be talking about today. So we really need to bear that in mind. 
 
Dr Ursula Sansom-Daly [00:25:43]  Some thoughts about what all this means for clinical practice. I think one of the big things for us to think about with this communication is that there's sort of almost two parts to be conscious of. There's the content, the what of what we want to talk about, and then there's also the process, how we go about it. And so I think oftentimes health professionals can be quite concerned about what they're going to say and how they're going to say it. And so I suppose that's a little bit of the content. You know, do I bring this up? Do I bring up that? Do I talk to them about pain medication, do I introduce them to palliative care? And then there's all this stuff around the process. How do we do it? When do we do it? Who's leading that conversation? What words are they using? How do you set up the consultation? How do you invite along? Do you give them forewarning? All of those sorts of things. And we reviewed the literature recently because we just didn't feel like there was an awful lot around to help guide that from the clinical practice side of things. And we tried to look at what the implications were for the content of what you say and also the process, how you say it. And we developed this model looking at tying together all the different aspects of what I've been talking about, the developmental stage of where adolescents are at, their cognitive, social and emotional capabilities and capacities, medical components of their care, existential elements of palliative care and end of life care, psychosocial considerations, family and the ethical considerations around decision making and end of life care. And in this model, we really looked at the evidence for each of these things and how this informs these three concepts. So the timing of when you have these conversations, the content of what you talk about, and facilitation. So who's raising the conversation? Who's opening the conversation, who's supporting that conversation and thinking around the developmental piece and the psychosocial piece, particularly in terms of what goes into youth friendly care. And I'm happy to share the paper with anyone who's interested. But one of the things that came up quite strongly from the evidence is that it's likely not any one profession's job to be having these conversations or to be facilitating these conversations. And in actual fact, from a relational and developmental perspective, in terms of youth friendly care, we know that it's likely to be the most important, that the young person be able to have these conversations with whichever member of the health care team they have the greatest bond or rapport with. And for some young people, that may be a clinical nurse, a consultant or care coordinator, it could be their doctor, it could be their psychologist, it could be a range of different people. We need to think about centering around what that young person needs and what's going to be most helpful for them. 
 
Dr Ursula Sansom-Daly[00:28:39] And then in terms of timing and content facilitation, we're going to talk about this a bit more. But I think all of the best thinkers on this topic, I would say currently the leaders and the global leaders in doing this research, I think would say that it's not a one-time conversation and it's actually a kind of a dynamic process that happens over time. And so it's to do with some of that early seed planting and the early ways that even from diagnosis, not that we're launching straight into talking about death and dying or anything like that at diagnosis. But one of the ways is that at diagnosis we can be starting to plant some of those seeds that are going to mean that from a relationship building perspective, that we are laying the foundations for having some of the trickier conversations later on. 
 
[Dr Ursula Sansom-Daly [00:29:29] This is a really excellent paper that I can highly recommend for anyone, it’s by Abby Rosenberg, Joanne Wolfe, Lori Wiener, Maureen Lyon and Chris Feudtner, they're all pretty much giants in the field of this work. And, you know, they talk about in this paper some of the challenges and opportunities with having these conversations with terminally ill adolescents and how you actually do that. And again, with this idea of seed planting, they talk about what are the ways that you can flag for a young person from the very early meetings that you have with them, that this is a relationship in which I'm going to be honest with you and I need to be and I'm going to have the conversations with you when I think there's something important for you to consider. And so they kind of suggest that early on you can even say something like, you know, something you should know about me is that I'll always be straightforward and tell you the truth as best I know it. And that's really all you need to say early on. And then later on you've planted that seed and you can say, remember how I when I told you how I always be straightforward and tell you the truth? Well, now I'm afraid I have some difficult news. So you've planted that seed and you've come back to it, and it's all of these things that we can do that help give young people an anchor and help give them a sense of certainty and security amidst all of the uncertainty that serious illness involves. 
 
Dr Ursula Sansom-Daly [00:30:50] This is another really lovely paper led by Lori Wiener and Sima Zadeh.  Lori Wiener,  I'll talk a bit more about her in a minute, but she's led a lot of really important work developing this Voicing My CHOICES  tool and in this paper they again give some really helpful language about how you can introduce a tool like this, a communication guide. And so they say, “ Well, although we're hoping that this next treatment or medicine will be helpful. Many people your age have told us that they find it helpful to have a say about what they would want or not want if treatment doesn't go as expected. In fact, people your age helped create a guide so they could put down on paper the things that are important to them”. And of course, like all of these things, everyone has their own clinical style and approach. but I think it's always helpful to get a sense of possible language that you can use. It's about opening doors. And I think, you know, the one thing that I think comes up repeatedly is that we may need to open the doors many times and in different ways. And we also need to be really listening carefully when young people or families may kind of nudge at the door as well and want us to open it. And I think that sometimes we're talking about a lot of different things at the same time and balancing a lot of considerations at the same time. 
 
Dr Ursula Sansom-Daly [00:32:11] This is a concept from psychology that I really love in thinking about this, the idea of dialectics, the idea that two things that seem exactly opposite can be true at the same time. One of the things that people often have concerns about having these conversations is that if we talk about the potential that treatment might not work, then we're going to take away all their hope. Like it's two completely opposite things that are completely incompatible. And I would think that actually we need to be able to talk about the two things as parallel tracks almost. You know, we can talk about what happens if treatment doesn't work and we can also still hope for the best. So I think these are really helpful things for us to be thinking about. 
 
Dr Ursula Sansom-Daly [00:32:57] There are some great questions there and that I might come back to a bit later on, if that's okay. I want to talk about some tools now, and I'm going to come back to the idea of support and disagreement as well. 
 
Dr Ursula Sansom-Daly [00:33:11] This is that Voicing My CHOICES tool that I mentioned, this is Lori Wiener who I had the pleasure of interning with and working with when I was a Ph.D. student. She's at the National Cancer Institute in the States. And so many, many years ago, she co-designed this communication guide for adolescents and young adults, and it's not a cancer specific tool, she originally designed it with adolescents with cancer and HIV, and she's since studied it in cancer, HIV and cystic fibrosis. And this is a communication guide designed for and by AYAs, and it's really an advance care planning guide designed to be a communication tool to scaffold many of these important conversations. It  has a range of different sections about how I want to be comforted in terms of symptom management and also things to do with legacy. So if I were to die, how I'd want to share my belongings or how I'd want to be remembered. And they've recently studied this in quite a large study across a number of sites in the States, this was published in last year in 2021, and in this study they really aimed to look at the perceived helpfulness of this communication guide and to determine whether engaging in advance care planning, using the Voicing My CHOICES  tool reduced anxiety, increased acceptance of illness, and improved communication about advance care planning with either family or health care providers. And they looked at 18 to 39 year olds, like I said they have a slightly different age range to us with cancer and chronic illness. And they looked at things like communication, end of life anxiety, acceptance of illness, social support. And what they did is they used an interview protocol and they looked at young people's perspectives pre and post the interviews. And then they also followed up with family and health providers as well. They included 129 participants, which is a pretty nice sample size, and they found that 50% had not previously discussed their wishes or preferences for end of life care with a family member. But 47% of those did share their Voicing My CHOICES pages at follow up, 77% of the young people had not previously discussed their wishes or preferences with their health care professional at baseline, and only six shared what they wrote in The Voicing My CHOICES at follow up. Some quotes were: “'I haven't had an opportunity to have this conversation yet.” “ I think they should raise it with me, not the other way around”, which interestingly suggests that doing the tool in itself is probably not enough necessarily to facilitate that communication with the wider team. They found no significant differences in perceived social support or acceptance of illness, but they did find that anxiety around end of life planning decreased significantly between baseline and then doing the tool and then  follow up. So anxiety actually about end of life improved and over 90% reported the VMC tool to be helpful and suggested some changes. 
 
Dr Ursula Sansom-Daly [00:36:15] I think this anxiety finding is particularly helpful because a lot of the time if colleagues or health professionals are concerned about having these conversations, it can be a concern that we're going to really destroy their hope or make them devastated or that they'll fall apart. And just to flag that we've also been looking at this tool in Australia across a number of sites where we decided that this tool was great and it needed a bit of a local adaptation. So over the past couple of years we've been undertaking a multi perspective evaluation of the tool to then tailor it for an Australian version and then pilot it. And in this paper here, we describe some of that process and I suppose, just to say, we do kind of speak the same language English as they do in the US, but looking at the original tool, it really wasn't quite fit for purpose for an Australian clinical context or certainly language that just doesn't fit culturally for us. And also perhaps in terms of our healthcare system which is quite different. So for example, there were items to do with whether you'd want to be able to hire and fire people in your medical team. There was also other language issues. So through two rounds of interviews we adapted the content and the language involved in the tool, for example, the spiritual section became more of a spiritual and cultural section, which was more inclusive and more appropriate in the Australian context. 
 
Dr Ursula Sansom-Daly [00:37:51]  And we also got their thoughts on the graphic design of the tool. And so this was in the second stage of interviews with 17 young people, just over half of them were female. And here are some of the quotes. This young person said: “The picture on the cover just really reminds me of the clinical clinic room that has like false nature imagery trying to be comforting but ultimately very unnatural.”  This person said: "I don't know how well I'd respond to it. I probably wouldn't think much of it." "I think it's ugly. Yeah. Kind of makes me feel like I'm looking at a pamphlet in a medical centre. I don't think it's appealing to any age, but I do like the idea of water and clouds and sky, just maybe not the reeds and things." This person said: "I mean, I think the kind of nature based motif is lovely. I think maybe changing the font, it just seems a bit dated." This person said:, "I do like the dragonflies and that kind of thing because I know that dragonflies are really symbolic for some people." So what we took away from this is that firstly, unsurprisingly, young people have some very strong opinions and unsurprisingly we got about a million different opinions. But the consistent message was that the graphic design of the tool could benefit from a bit of an updating, and making it a bit, not so much modern, but just updating it and changing it a little bit. So we did some work in partnership with Care Queensland, and we were able to redesign the look of the tool as well as just be a little bit like not hit you over the head with Australiana, but just be a little bit more local in flavour. And this is what the tool looks like now, and it's got some new sections in it as well that are different to the American tool. And these were sections that came from young people's suggestions that we were interviewing. So stuff you need to know about me to give me the best care possible, my bucket list, there's that, there's new sections there, these are just adaptations of the original tool. This is a new section here, how I would  like my online presence to be managed, what do young people do about all kinds of social media stuff and where that goes after they die and prompts if they wanted to be able to write letters to anyone. And so we're really thrilled that we're currently piloting this new version of the tool at the moment at the Sydney Children's Hospital, Prince of Wales Hospital, Queensland Children's and Princess Alexandra and potentially some more sites to come on board as well. So that's really exciting because I think we're now at the stage of getting more data to support the impact and the safety and feasibility and acceptability of the tool in practice with young people currently on treatment for cancer. 
 
Dr Ursula Sansom-Daly [00:40:39] Where to in the future? I think one of the things to highlight is that it is actually a standard of care in oncology that young people be able to access palliative care to reduce suffering throughout the disease process, regardless of disease status and when necessary, that they should be able to receive developmentally appropriate end of life care. So that's actually a recommended standard of care based on a lot of evidence. And so we need to think about when do health professionals need to be able to regularly, consistently and effectively implement that standard across all the different settings that we work in. And one of the studies that I've been really excited to lead most recently has been this global AYA Accord funded work, which we have undertaken through COVID, but using a global survey to really understand what kind of training or support does the AYA clinical workforce need to feel confident, capable and skilled to be able to deliver this work. We're just in that analysis stage of that data, so I'm hoping to be able to get that out soon. But I think what we're hoping to do is really drill down on the particular skill sets that health professionals are feeling they need the most support around and how they would most want and be able to access training to do that. 
 
Dr Ursula Sansom-Daly [00:42:14] And I think the other thing that I'm particularly passionate about is making sure that we can continue to break down silos in delivering this care. We know from the data that often these conversations are brought up too late and sometimes they're only raised once the palliative care team is introduced. But we also know that palliative care is often not introduced until much later in the treatment trajectory as well. So I think it would be really great for us to think about new and innovative ways that we can be just harnessing the skillsets and the different complementary skill sets of everyone in the multidisciplinary team. I'm obviously a clinical psychologist, so that's the hat and the perspective that I wear. Recently, I was part of this group really advocating for the unique role that psychologists can bring to this sort of work, considering that it is so relational in nature. By that I mean that it just really needs to be built on the foundation of a really strong rapport and of a really excellent working clinical relationship. I think there are skills that psychosocial staff can contribute, but also to contribute to help support colleagues. There's a lot of things, a lot of different disciplines can contribute and I think that in the healthcare system, we still don't always do the best job of breaking down those silos so that different disciplines can be working together and supporting one another and sharing how this work happens. 
 
[Dr Ursula Sansom-Daly [00:43:36]  I think that this is work that is only going to become more important as well, because while, you know, we're very fortunate in Australia we have fantastic health care and the vast majority of young people diagnosed with cancer are fortunately going to survive these days, it's something around 88% on average across diagnoses. However, we also know that there is an increasing group who fall into this gray zone, who might have a poor prognosis but might have many opportunities to have their illness managed or held at bay through a range of different kinds of new treatments and experimental treatments, as well as precision and immunotherapies. And so I think the increasing complexity of what that medical treatment looks like means that I think we all need to be really adept at thinking about how do we support people, to cure them in the best way possible, how do we support people to engage with their lives if a cure is going to be on the horizon, and also, if it's not, and how do we help them live their best lives in the meantime for whatever that trajectory looks like? 
 
Dr Ursula Sansom-Daly [00:44:41] I'm going to finish up there in terms of the content of what I want to talk about.  I can see really excellent questions in the chat, which I'm happy to dive into now. And I guess I just want to really thank you all for dialing in. And there's my email and my Twitter handle. I'm really happy for anyone to reach out directly or share any of the papers that I've mentioned. I also just want to really acknowledge my funding sources. Cancer Institute New South Wales in particular, and the AYA Global Accord who funded some of that work that I spoke about. Thank you. 
 
Philippa Collin [00:45:16] Hi, Ursula, this is Pip Collin. I feel like your ghost host. I'm sorry that I had technology problems at the beginning, but I did actually manage to catch the very first sentence that you started off with, and it's been fantastic to sit here and hear your presentation. Thank you so much. And congratulations on the work. I think it's very important to hear about the research that sits behind this, but also the very practical tools that you're developing with young people. And I couldn't help thinking as I sat here that this seems like a great example to me of where very careful research and co-design with young people could actually be setting the standard for best practice, not just for young people, but actually for all people, which I think is maybe where you started to end, but in any case, thank you very much. We only have about 10 minutes for some questions. I might dive straight into those, if that's okay. We've got a few here and I might start with one from Aija which I think kind of goes to the last part of the discussion where you talk about the role of professionals and I guess taking up and implementing the model and using some of the resources and the approach that you're advocating for. "Are you looking at or is there already work around how early career clinicians can be supported to have these conversations?" 
 
Dr Ursula Sansom-Daly [00:46:52]  I think that's actually where I want to take that Global Accord work next, if I can, because the short answer is that I don't think we currently know what early career clinicians need the most in terms of doing this work, there's plenty of data to say that they probably do need more support and skills or training or supports to feel more confident and capable. I think that many professionals have fantastic skill sets, but it's actually the support to know how you're applying your training and skill set in particular situations. And I do think that there is something uniquely tricky for early career clinicians about treating a young person who may not be that different in age to you, who may be dying. And similar tricky things can also come up maybe for older people who might have kids who are the same age as the young person who might be dying. So there are tricky things, you know, across the board. Currently I think it's probably quite ad hoc and quite random how early career clinicians are supported. And that's certainly where I'd like to see that Global Accord work go next. In that survey, we've asked what exact skill sets and kind of skill processes that you want extra support with and what kind of training could you and would you access and use? And we're going to use that to feed into hopefully then getting some funding to develop some training and support because I think it's really important to think about. 
 
Philippa Collin [00:48:27] It certainly seems like the kind of thing you'd want to increasingly embed in clinician training right across that spectrum of professionals that are working in interdisciplinary teams. So Sharon asks, I guess a slightly different but related question in terms of the role of parents: "What happens when parents and adolescents disagree either about having the conversations in the ways that you're promoting or indeed where there are disagreements that come through those conversations themselves about treatment or planning." 
 
Dr Ursula Sansom-Daly [00:49:23] Such a tricky area. I think what I would say is if we're talking about a younger adolescent, like a 15 or 16 year old where the parents are still very involved in treatment decision making and things like that. I think that it's important that health professionals talk to the parents,  I think sometimes they can use the research to help  guide a conversation, hearing first what the parent's concerns are and then also saying we know from a lot of research that this can be the sort of benefits or the opportunities if we do have these conversations. And some of those leaders in the field that I mentioned throughout today, they talk about a couple of words that can be really helpful. And one of them is, I wonder. And another one of them is I worry. So I wonder what might happen if we were to ask Sally about this. I wonder what she might think. I wonder what that would be like, just to hypothetically think about it. And then, I worry. And if we use I worry, then that's when we can share, so hearing the parents’ concerns and what their reservations are, and then you can say, I worry what it would be like if Sally joined these conversations and talked about that. And, I worry that if we keep this from her, then there might come a point where she actually wishes that she was part of the conversation, or we might be preventing her from being able to say her preferences or things like that. So I worry and I wonder have been talked about as really useful words that you can use just to plant seeds. But I guess that's just trying the best that we can to advocate for the young person's voice being in the room. And I know that at our centre we certainly try to have adolescents in the room as much as possible. But it is a tricky thing. Likewise,  Sharon's question is also sort of verging on the terrain of like when they disagree about treatment decisions and things like that, and that's really challenging as well. The Voicing My CHOICES tool can be really helpful to elicit preferences and to have an external resource to guide some of those conversations. And there's also another really excellent tool developed by colleagues of mine called the Delta Tool, which supports young people and health professionals and parents to make decisions around early phase clinical trials in that triangular way and helps sort out their preferences, in terms of how that plays out. 
 
Dr Ursula Sansom-Daly [00:52:10]  Is it okay if I just jump in because I can see there's  a question about conversations with brothers and sisters and then there's a really important question about hope. I would say the conversations about brothers and sisters, that probably depends a little bit on the family and the family system and how that family works. But the idea with say the Voicing My CHOICES tool, is that it's really up to the young person who they'd like to include in any of those different sections of the tool, and that might be sections that they really do want to share with the brother or sister. In our service. Unfortunately, we don't always have the capacity to directly meet with all of the siblings, but it's really important that they can be included. And I think that community organisations, places like Canteen for instance, can often do some really great work with supporting brothers and sisters. But I think it's always worth asking that question of the young person and the parents as well, are there other people that you want to be involved in this conversation. Would you like us to be involved in any way to help broker that or help make that happen? They may not want us at all, but they might actually find it helpful to have a joint family session so you can explain stuff that they don't feel able to explain. 
 
Dr Ursula Sansom-Daly [00:53:30] And Alexander's question about hope is really excellent and I think gets to the nub of why a lot of the time people don't want to have these conversations. And I would say to that, I think it depends on what you're hoping for. And there are many, many things that we can hope for. And I agree that sometimes it seems like our medical colleagues can be afraid that talking about palliative care will destroy the will to go through treatment. And I would also say that the data is increasingly showing that that's actually an unfounded fear. Like Lori Wiener's study before showed that if anything, anxiety went down after doing the tool. I think often what we can do by talking about the conversations is actually just give people a bit more of a sense of certainty and control amidst all of the uncertainty. And I think that the leaders in this field talking about palliative care communication would say that there are many different ways that hope can look, hope for a cure is just one type of hope that we can hope for. And so I think it's not about destroying hope, but sometimes it's about kind of tapping into what that hope is and what it looks like. And we might need to be supporting young people and families over time to think about what else they might be hoping for if it's the case that it's looking less likely that their hope for a cure might be a realistic hope. We're all human, and anyone who's a parent, I'm sure, is probably never going to drop that hope of hoping that their child's going to be cured or any young person is probably going to have in their heart of hearts that 1% that's still hoping to be cured. And that's a really human thing. But we can have a diversity of hopes. And so I think that with our medical colleagues specifically, I think the challenge is the tools they have are  medical treatment tools. And I think sometimes they may not feel comfortable to know what else they can do that feels useful and meaningful besides the pursuit of that medical hope. But, yes, it's an important thing. But that's where I come back to that idea of the dialectics that I introduced, you know, the stones balanced on both sides, because I think you can have a hope for cure and you can have hope for other things and you can be planning for different eventualities. It's tricky. 
 
Philippa Collin [00:55:57] I think that point that you raise about ultimately that a sense of agency and a sense of being respected, being involved in the process and what that means in terms of young people's sense of self and the impacts on their mental health is borne out in so much research, in so many areas related to adolescent and youth and health. And so it's no surprise really that it's reflected in your research as well, it's so important to reinforce. I think it might also be an empowering insight for parents and professionals as well, who may be feeling a little uncertain about taking up and opening up these conversations, as you suggest, but certainly very powerful. 
 
Philippa Collin [00:56:53] I have one final question, if that's okay. I think we've got two minutes to go,  it goes back to the questions that have already been asked. It's one thing to support and encourage people to have conversations and to listen to what people have to say. But we know that it can be very challenging for some adults and professionals who are used to certain ways of doing things and work within institutions that are very much organised around adult ways of acting in the world, to act differently and to take action on young people's views. Have you come across anything in your research that helps us to unlock some of the challenges that adults and other health professionals might face in actually acting on young people's perspectives or wishes when they might challenge some of the orthodox ways of doing things, particularly in a youth setting? 
 
Dr Ursula Sansom-Daly [00:57:57] That's a meaty question. I think the short answer is that I think that that's exactly the kind of thing that I'm currently grappling with and the sort of thing that I would hope to influence next. Developing the Australian Voicing My CHOICES tool, we're really excited about that and we feel confident that it's a really helpful and useful tool. But we know that it's not enough to develop resources and drop them out and kind of hope that it's going to change everything. We know it doesn't work that way. Because the healthcare system is a really complex, multilayered, beast, and so I think that's really where the next steps of where things need to go, and how do we break down those silos.  I was really privileged to be part of a paper that Lori Wiener led in 2014, thinking about how we better train oncologists in AYA palliative care stuff. And there were some really interesting models that I think we could consider, and I'd be really interested in thinking about how do we harness interdisciplinary training and communication and dialog so how do  we talk more with our multidisciplinary colleagues about these sorts of things when we're trapped in our silos, but I think that's where we need to go next, once we have a sense of what training people need, we then need to look at what does that look like in the system So, I don’t think I have good answer to that yet, I'm afraid. 
 
Philippa Collin [00:59:33] No, that's great, Ursula. And I hope that we all continue to hear your updates as you continue to do this work. I think that systems change piece is the big question. You're obviously grappling with it. We've run the clock down completely. Thank you so very much for being our presenter today, and please stay in touch.