RECORDED Fri 06 Dec 2024
SUMMARY KEYWORDS: palliative care, complex health conditions, quality of life, end-of-life care, grief and loss, pediatric palliative care, family impact, school connection, mental health, social isolation, anticipatory grief, healthcare resources, community support, child-centered care, teacher resources
SPEAKERS: Megan Gilmour, Camilla Rowland
Megan Gilmour 00:00
This episode is proudly brought to you by the TPG Telecom Foundation dedicated to creating opportunities to improve the health, wellbeing and education of Australian communities in need. Hi, I’m Megan Gilmour, MissingSchool Co-founder and CEO, and this is Live & Learn. This is the podcast that unearths insights at the intersection of health and education, building a powerful alliance to keep kids with complex health conditions connected to school from anywhere. The podcast is recorded on Ngunnawal land, and we acknowledge and pay respect to the traditional owners of this land and the land on which you’re listening.
Megan Gilmour 00:48
Welcome to our weekly webcast, a place to zero in on the interplay between health and education and to amplify the voices of those supporting school students to navigate their educational journeys despite complex health challenges.
Today we have with us Camilla Rowland. Camilla has been the CEO of Palliative Care Australia (PCA). Since 2021 and brings over 30 years of experience in health and community services. She has held leadership, clinical and educational roles across palliative care and aged care and disability, as well as serving on boards and national committees.
An accredited grief and loss educator, Camilla has worked in both rural and metro palliative care and served as PCs National Program Manager in the early 2000s.
Welcome Camilla. We’re so excited to have you on Live & Learn.
Camilla Rowland 01:45
Thank you for having me on.
Megan Gilmour 01:47
So, Camilla, today we’re here to talk about supporting school connections for students with complex medical and mental health conditions. So, we’ll dive right into the first question.
Tell us how palliative care impacts kids and why it’s something every Australian needs to know and care about.
Camilla Rowland 02:07
So, let’s talk about, what does palliative care actually mean to start off with, because it’s one of those almost taboo topics that, you know, we’re starting to talk about in generations now, but older generations beyond baby boomers, are really reluctant to talk about end of life and terminal illness and life-limiting illnesses.
So palliative care is actually an international model of care which is holistic. It addresses the symptoms, the pain management, the social, emotional and spiritual care of a person who has an illness that is a terminal illness. So that covers illnesses such as some cancers, motor neurone disease, Alzheimer’s, and a whole range of other diseases that do become, or can become, life limiting.
In Australia, each day, we have 400 people who die each day from a life-limiting illness, or about 190,000 a year. And those are what we call expected deaths, and it means that somebody’s illness has progressed to a point where they’re no longer going to be cured.
They might be still treated for comfort purposes, to ensure that symptoms are under control. And then we have this service, not just delivered by specialist palliative care services, which is a specialty in medicine, but it’s also delivered by other specialists, like oncologists in cancer care, that might be one you’re most familiar with, or geriatricians in aged care, or GPs in everyday family care.
So if we talk about how it affects somebody, if we think about a child or a young person in the education system, not only does it affect them significantly if they have the life-limiting illness themselves, but it really affects them if their siblings are diagnosed and their prognosis, meaning the outcome is not going to be a great outcome, it will eventually lead to death. And also, if they have a parent or a grandparent that they’re close to and that they’re part of their family and network.
That can impact us on a daily basis, and any child or young person will be impacted on a daily basis. So, we can’t just think of it as end of life, the last few weeks of life, where that person’s actively dying and then dies, about the grief that comes with that. We need to think about that well in advance when the person gets that news that their illness is actually going to be life limiting.
The whole aim of palliative care is trying to give people quality of life experiences until they die. So, it’s, we say it’s living until you die. But of course, this is going to impact every child or young person differently depending on the context of their situation.
Megan Gilmour 04:54
That is certainly something every Australian needs to know and care about. And thank you for working in this area for so long. It’s specialised but also a very special part of a person’s life. And the distinction that you made there between potentially a child themselves being in that phase of their life, but also having somebody else in their life, in that situation, in that care. So, both of those will have some profound effects on school age children.
Many people probably assume things about palliative care. What’s the million-dollar question you get from parents or loved ones when their child is in palliative care?
Camilla Rowland 05:52
Will that person be in pain as they die? And people are worried about pain. People are worried about that whole experience of end of life, and regardless of your belief system, whatever that may be, people worry about that.
And in this day and age, we have such fantastic symptom control and pain management medications and treatments available that nobody should have to die in pain. Palliative care can be a bit of a post code lottery in Australia, which means it’s not always available everywhere. We are underfunded.
However, people can always access a level of supporting care through the health system to try and address those symptoms.
I guess the other thing that we commonly find is that not everybody in a family is on the same page about what’s happening to their loved one. So even the person themselves that has the illness may take away from their discussions with their doctors a particular perception of what they think is going to happen and what that will look like.
And you can have family members. You can have parents, siblings, all sitting in the same room listening to the same thing from a doctor, and they’ll all walk out of that waiting room or that consult room with a different idea of what was said, because it’s a highly distressing situation, and when people are distressed, they don’t always listen and hear everything that’s been said.
And it’s good to be able to talk to people who can help guide you through what actually was said and what does it actually mean, and then plan for what are the next steps?
Megan Gilmour 07:38
What’s the most important thing that you want them to know?
Camilla Rowland 07:41
The teachers?
Megan Gilmour 07:44
Well, the families, the people themselves in the palliative care.
Camilla Rowland 07:52
I think for families, it is to say that there are resources out there. We have the PediatricPalliativeCare.org.au website, which has a number of resources, including ones for teachers. Ronald McDonald House worked in collaboration with palliative care strategy to develop some fantastic resources for teachers. So, there are resources out there. There are doctors and other clinicians who you can talk to, who will help guide you through the process.
I think everybody’s context is different. So don’t assume that if you know a family who’s been through this, that your experience is going to be exactly the same, because you have a different dynamic in your family, you have a different financial situation, a different setup in the way your family communicates, and so everybody’s situation is very, very different.
If you’re a family that’s supporting another child and family at school, I think it is just to say to them things like, we’re so sorry that this has happened, you tell me how we can support you. Because people often need guidance on how they can support someone in that situation. How can we support you? What can we do? What can we – how can we be part of this along the journey? And not just as a one off, but sometimes that journey is a long time. It’s over months or years.
So, you know, being able to support in some way, however small is, is really brilliant in terms of being able to support a family that’s going through someone in their family with a life limiting illness,
Megan Gilmour 09:27
Such an important point, and I’m sure we’re going to drill into that a little bit more, because I know, and I suspect it’s true for many people, that we find it very difficult to know what to say and what the right thing to say and do is, and often that can lead to saying nothing or avoiding it. So, I’d love to pick that up later.
Camilla, if you’re willing to, would you tell us what brought you into the world of palliative care?
Camilla Rowland 09:59
It’s interesting because we often say, for those who’ve of us who’ve worked in the palliative care services that we fell into it by accident. It’s often not been in the past, top of people’s priorities in the health field, and it can be quite confronting for people.
And I really was working in another field in aged care, where I came across people who were palliative, and I was really attracted to working with people at that part of their life where they’re thinking about quality of life and dealing with what I call the nuts and bolts of life, cutting through peripheral things that perhaps are not as important. And what is it that’s so critical to people to give them quality of life?
And I found that fascinating, and I found it an incredibly rewarding area to be in, and I was really drawn to it, and I ended up becoming an educator in it, and a grief and loss educator as well. And of all the different fields I’ve worked in, it’s probably the one I’m most passionate about.
Megan Gilmour 11:06
Well, from us to you, thank you for the work that you do, and it’s such important and meaningful work, and thank goodness we have people like you in the community who will step into that space that many of us might find confronting, as you said.
Knowing all that you know, what’s your biggest hope for kids in palliative care, their families and loved ones when navigating this journey?
Camilla Rowland 11:37
A child with a life limiting illness is very different from a very elderly person who’s lived a long life. None of us ever want to think that our children might be struck down by a life limiting illness and finish life perhaps prematurely. And so, what I would say is when this happens, there will be shock, there will be high levels of distress and grief. Grief is not just about when someone dies, grief for the anticipation of losing somebody, and that life will alter as it is. And I think if it’s a child or a young person, we feel that there’s been a life that hasn’t yet been lived.
So, acknowledge and accept that this is going to be distressing, but you will survive it, and you will get through. But people often need a lot of support to be able to do that. And of course, not just the child or young person themselves that has a life limiting illness, but their siblings and their parents and their extended family.
So having someone to guide you through and pediatric palliative care services, which are mostly in cities, have people that can guide you through, but even your own GP or your practitioner where you live, that you might have had a connection with for a long time, is somebody who should be able to refer you to, or help you link in with services in your area.
So accept those supports, read up and access the resources that are available, and prepare yourself as much as possible with information about what services you might need, what you might need to consider in terms of family finances, how to support your other children, how to support your other family, and in turn, how they can best support you.
One of the things we often talk about, which is absolutely critical for all of this, is really open communication. You know, maybe 70 years ago, children didn’t go to funerals, or we didn’t tell children about somebody’s illness as it progressed, and they didn’t find out until that person died. That stopped decades ago.
You know, we now talk to children quite openly from the time they’re young, particularly with their access to social media, they are surrounded by understanding death a lot earlier than perhaps I was as a child, when social media didn’t exist.
So, explaining to them that somebody is very seriously ill, and we don’t know how this is going to end at some point is really important. But bear that in mind in the context of a very little, child that’s in early childhood education does not necessarily have the concept of aging and death. You know a child in middle school, in primary school, will start to develop that understanding about life and death, and of course, young people in high school completely understand what that means.
And it’s one level understanding intellectually. It’s another level when it affects you personally and it’s someone that you love as a child or a sibling, and so we need to be really sensitive to how does that young person interact, that child interact normally? Are they an open communicator? Are they the sort of person who normally expresses their feelings and talks very openly? Or are they a fairly quiet person who internalises things and allows people to be, and to express the way they’re most comfortable, I think, is really, really important throughout this.
Megan Gilmour 15:14
Huge point there. It’s personal, and everyone reacts and responds differently. And another important point that I’m picking up there too is that grief is not just after somebody dies, but it’s also the contemplation of it and the navigation through that process as well. And that there’re ways to create greater understanding of what’s going on and ease.
And you’ve pointed out there that there are evidence-based resources available, and sometimes even these can be incredibly supportive just to navigate and understand the experience, and that in many ways, while it is personal, it’s also a universal experience as well.
Camilla Rowland 16:07
We have videos. It’s not just the written word. I think people learn in different ways, as you know, in education, not everyone absorbs things from the written word. It’s about we have videos of families telling their story of what worked for them and what didn’t work for them and their experience, and that can be helpful.
You know, from one parent to another parent, from one young person to another young person, and starting to listen to those stories and getting ideas about what might work in your own context, is really important. As you talked about, we call it anticipatory grief, you know, starting to think about, how do we address that?
It’s really important to also understand that not everybody needs counseling. So, a lot of people will have the resources they need to support each other within their own families and their own networks. But when do we refer people to counseling? When we’re concerned that their ability to function on a day-to-day level is starting to be impaired?
So, you know by if by talking about it, and you get the sort of support you need from your network around you enables you to be able to function. You still can be very distressed, but you know function on a day-to-day basis, then you may not need counseling, but if you’re finding difficulty with functioning, that’s a good time to reach out also for counseling for a person of any age.
Megan Gilmour 17:40
What are some of the common and perhaps frustrating public misconceptions about palliative care and how have you seen this impact families, particularly of young children in an end-of-life scenario?
Camilla Rowland 17:56
I think the biggest misconception is that people think it’s only that last week of life, it’s as you’re dying. And look, that’s probably compounded by the fact that a lot of palliative care services only have enough funding to look after people for the last two or three months of life, and in some situations, only the last month of life.
But pediatric palliative care is a little bit different, because in the pediatric palliative care services located in mostly cities, they’re used to working with families for many months and for quite far ahead of when death is anticipated. And that’s often because the illness has got a longevity to it. You know, whether it’s cancer, whether it’s a developmental illness that’s arisen through congenital issues, often there’s an anticipation and that that could take on some months.
So those services are really geared up to looking after children and young people for long periods of time. It’s really only the adults in adult palliative care that we find, but it’s really often that last month to three months. But because of the movies and the way that the media portray palliative care, people often think, oh, it’s only when someone’s active, what we call actively dying, and that actively dying components often, you know, the last few days of life, and that’s when people think, ‘oh, we should call palliative care in now.’
But you would find that most families these days in Australia with a child with a life limiting illness will have accessed their doctors well in advance. We’ve got a great health system here in the sense of how we look after children and young people, and you know, they’re connected in well in advance.
I think sometimes people don’t want to know because it’s too confronting and it’s too distressing that they don’t want to access palliative care earlier, because they think they might die more quickly, which is, you know, which is a huge misconception, because that’s not the reality, but it’s just that if we don’t have to have it now, then, you know, we’ve got longer time.
Megan Gilmour 20:09
Yes, very interesting. It’s all those tricks that the mind plays on us. If you avoid it, you know, it might not happen, or it’ll be further away. And also, I hear that you have a language around this, which I’m finding really reassuring, and that difference between what you’ve said is active dying as different to understanding that there’s a life limiting illness, and that this, that death will occur because of that.
Just the difference between that and understanding how, what that means for palliative care is really important. And also, you mentioned there, what we can do, how we can engage with people in our life, in that situation, to ensure that we have that meaningful relationship, and not just leave everything till the end.
Camilla Rowland 21:28
Yes, don’t leave anything unsaid.
Megan Gilmour 21:30
Yes,
Camilla Rowland 21:31
There’s a couple of things I want to discuss here. One is about quality of life, and you’ve heard me mention that a few times, because the aim of palliative care is to enable people to have quality of life while they’re still living. So, what does that actually mean?
So, as adults, we often say, right, what’s on our bucket list? What are the things that are both on our bucket list, but things that happen in our day-to-day lives that enable us to be comfortable and have joy and have a good experience in life?
Children and young people haven’t often necessarily thought what gives them quality of life, because they’re still forming their ideas often about what gives them joy and what makes them happy. But I think we’d be surprised if we sat down with our kids and our young people and said to them, so you know, what is it each day? What is it each week? What is it longer term, that are things that you think make you happy in your life, and give you comfort, because happiness is different from comfort. So, what makes you happy? What gives you comfort? What gives you meaning to your life?
And sometimes we assume we know what that is. But when it comes down to asking that child or young person, it might be different, and it may not be that we can do all the things that are on that bucket list or on that big list. You know, if we’ve got brittle bones, it may not be good to go skydiving, you know, it’s actually doing things in the context of what is possible. But there is a lot that’s possible, and how do we do that, and how do we plan to make that happen in the time we have.
And I think if you said to people when they were young, I want you to think now about what are the things that are going to motivate you in life and give you quality of life for the rest of your life, people will live with no regrets. And that’s one of the things that it’s taught me. Don’t live with any regrets. Make sure that you experience those things in life that are important to you.
And I think most people who work in palliative care will say that, almost without exception, that every patient that they’ve worked with that’s had a life limiting diagnosis, at the end of the day for them, it’s about the quality of the relationships with the people they love. It doesn’t matter how many million squillions that they might have. Yes, that can make life easier and happier at times, but at the end of the day, it’s about the quality of the relationships.
Megan Gilmour 23:56
So important. And I pick up what you’re saying there about this work that you do, which has this body of evidence around it, including your own lived experience with it. You’re working with it, and all those observations and those themes in the observations, and the concept that we’re all heading there sooner or later, and if we think about quality of life, and we can think about that in the present moment, regardless of whether that’s a closer scenario or further out one, you know – there’s some unpredictability in that anyway – but to be able to understand what brings us joy and has meaning for us, to give us that quality of life and others, and understand what that means for others we will live better. Absolutely.
I think that’s such an important takeaway here and especially hearing you how you translate that into the experiences of children, and perhaps questions that we wouldn’t ask children because they’re things that you work out across time and so on but are absolutely available as conversations with children right now about what brings them joy or ease or comfort.
Camilla Rowland 25:24
Yes. You also asked me about another misconception. People think, you know, it’s basically from the movies that at the end that you all gather around the bed, and you say all the meaningful things that you’ve always meant to say, and then everybody is all, you know, happy as a result of those conversations. I mean, happy to the point where they’ve shared how they feel about each other.
There’s this expression that you die as you lived. And so, if you’ve been a person most of your life that’s quite self-contained and not expressive, then you’re likely to die like that as well. That’s not a bad thing. It just means that don’t leave the unsaid conversations to the end. You know, make sure that you reach out and say throughout that journey the things that you’ve been wanting to say, and share those things. Because, you know, it’s not always that you have that opportunity at the end to mend broken fences as well.
Megan Gilmour 26:21
Yes, super critical. And it also brings up feelings in me that sometimes we don’t say those things because we feel too vulnerable to say those things to the people that we love. Why? I don’t know why that is, but they almost feel like too big or, I don’t know what causes that, but it is a phenomenon.
Camilla Rowland 26:45
And I think every family is different. If a family is a very expressive family that tells each other they love each other all the time and tells each other what they think, then you know, it’s a very different scenario from a family that’s fairly quiet and doesn’t express themselves all the time.
Megan Gilmour 27:10
Yes,
Camilla Rowland 27:10
I think over the generations now, we’re finding that people express themselves more openly because subjects are less taboo. If we look at the evolution of discussion in families and what we talk about, you know, we pretty much talk about anything now. We talk about sex; we talk about mental health. You know, there’s not many subjects that are taboo.
And yes, people do talk about life and death, I think we’ve had two major milestones in our history, and that just in the last five years in Australia that has brought those conversations about death and dying much closer to home. One was COVID. So, with the advent of COVID, not only were families thrown together to live and work together much more closely, but most people were aware that COVID could be a life limiting illness.
You know, we have had literally 1000s and 1000s people die of COVID in Australia and so, you know, people’s mortality did come into discussion. The second thing was the introduction of voluntary assisted dying in almost every state and territory, we’ve got one territory left. And that has made people think about assisted dying, and what does that look like, and what does that mean, and how does that resonate with our values, or not resonate?
So those conversations are happening everywhere in the media, and they’re happening amongst young people, amongst adults. And those two incidences in our history that have enabled people to talk much more openly.
We do an annual, almost an annual, market piece of market research to say how, how much does the community really understand what palliative care is? And we are now at that point where over 90% of people in the community understand the term palliative care. But what’s deeply underneath it, in terms of the complexities of it, I’m not sure that people are completely across that, but most people know what the words palliative care mean.
So, you know, we couldn’t have said that 10-15, years ago. So, we do have a changing society where we’re really striking down that last taboo and saying yes actually, we are talking about death and dying, Youth suicide is now very prevalent, and people talking about that means that conversations about other aspects of death and dying, including palliative care, are more openly talked about as well.
Megan Gilmour 29:34
Yes, well, it’s certainly something that we’re all going to experience one way or another. So, 100%.
Let’s move on to children, more specifically. Camilla, how many Australian children and youth are living with, or in a palliative care situation, right now?
Camilla Rowland 30:00
Yeah, so right now it’s about 39,000 children in 2023 and we’re expecting that to increase to around 45,000 in 2033 so in 10 years’ time, or now nine years’ time. So that’s a significant number of our population, if you’re thinking about a population around 27 million people.
Megan Gilmour 30:22
Yes, and well, 4 million school children in Australia. So, it’s a big number, and you mentioned there’s an increase. Without going into too much detail, is that based on an increased population size?
Camilla Rowland 30:44
Yes
Megan Gilmour 30:44
Okay. I just wondered whether it was that or whether there were new illnesses.
Camilla Rowland 30:50
new illnesses, no
Megan Gilmour 30:50
Thanks for clarifying that.
I’m probably not going to use the right word here, but I’ll, just go with it. Is there a delayed diagnosis, if you like, in terms of the need for palliative care, or is this something that’s picked up earlier?
Camilla Rowland 31:20
That’s a really good question. We don’t yet have the data and the analysis to show when referral is happening for children and young people. So, I mean, we’d love to have some data sets that give us some really clear indication about when is that referral actually happening.
Because if you think about the different types of illnesses, and some of them are cancer and some of them are other illnesses, they’re all part of different health systems, you know, sub medical specialties, and therefore, we don’t often find out at what point they’ve been referred into palliative care.
So, we can’t really answer that, but we’d like to be able to answer that. You know, when is it actually happening? We’d like to think that palliative care is actually happening from the time that specialists are understanding that the illness can no longer be cured. But, you know, people come to that understanding at different points, even specialists do. It’s not an exact science.
Megan Gilmour 32:22
Yes. I appreciate that. Such an important thing to think about, though, isn’t it, especially given what you’re saying about the process and making that quality of life the best that it can be for the longest possible time.
What kind of complications do kids in palliative care face?
Camilla Rowland 32:50
Yes. So, I would say it’s not so much medical complications, but rather complications of access to family, to friends, that feeling of isolation, particularly if they’re in the hospital system for long periods of time. Being disconnected from the everyday life that they have been used to, that can definitely be a complication and can make kids and young people quite depressed when they’re disconnected.
Not knowing what’s going to happen, because there is an element of the unknown with many illnesses as to even if you know – you hear – that at some point you’re not going to be cured, quite often, you don’t know how long that’s going to be. So, it’s not knowing and that change that happens.
And I think for children and young people, just feeling miserable and feeling unwell, especially if it’s a very young child, they don’t, may not always have the right words to express what’s happening for them. So, to get an accurate understanding of how they’re feeling is not always clear.
If they’re in a rural area, and they’ve spent a long time living in rural areas and they have to travel, have to travel to the cities. That disconnection from their community, also from where they live in their home, can be huge, especially if they’ve had to come from a farm to a city. It’s a completely different way of life.
I think for kids from other cultures too. A lot of our hospitals are very western model medicine, and for kids that come from other culturally and linguistically diverse communities that can be really confronting when the environment is so different from the environment of their home, those are just some of the complications.
Megan Gilmour 34:44
Yes, so important to consider. And we’ve heard there social isolation. We’ve heard there mental health issues. We’ve heard disconnects from places and cultural meaning as well. And it leads me to another question, if you’re willing to answer, is there a certain age at which, in a palliative care situation where it is clear, that that information is shared with a young person?
Camilla Rowland 35:24
We would always say that if a child can understand about illness, if they’ve had other family members who have died, grandparents, great grandparents, who’ve died, and they understand what death means and deterioration means, then you’re able to have that conversation about the fact that they’re unwell.
Rather than telling them exactly when they’re unwell, sometimes saying, ‘How do you feel? What do you think is happening?’ Often, kids are quite perceptive. We used to talk about kids in that sort of seven to nine years of age being really astute about understanding about that death is final. You know that people become unwell, or they’re elderly, and then they go on to die. They understand that concept.
I think it’s a bit difficult for preschoolers, but in primary school, you get to that point where kids understand about, if not, you know intellectually, at least, that you know people do die, although it’s distressing that people do die, and if someone’s been unwell for a long time, if it’s a child who’s been unwell for a long time, I don’t know that I’d go with the approach of this is what is happening to you, unless they ask that question. I think it’s actually about teasing out the context. So, context is really important.
I often hear from pediatric palliative care workers that often kids know when things are deteriorating. They have a sense of when things are not going well. And asking those questions, such as, ‘where do you think things are at for you?’. You know, ‘what do you think is happening for you?’ and teasing out that conversation. And it has to be about the right timing and the right context that people are receptive to information and their mind is inquiring about it at that time.
Megan Gilmour 37:18
Yes, and I’ll just point people back to the resources, and we’ll give the information to get those resources. I know that there are people out there who know how to manage this and handle this, and that there’s evidence based resources and supports available to go through this, and that no one’s alone or needs to be alone in this so, thanks again for this work.
You mentioned this earlier, but let’s just pick it up here in a short form. How are siblings and peers of kids in palliative care impacted, and what should we be across?
Camilla Rowland 38:06
I mean, they’re impacted in the sense that these siblings are very close to them. You know their brother or sister is really unwell, and it’s distressing. Most siblings become distressed and upset when they see their sibling unwell.
And they want to be part of it. They don’t want to be shut out of the information. They want to know what’s going on. They want to know how they can help, how they can support, how they’re going to be part of it.
And I think for parents and carers, thinking about when and how you engage the siblings along the journey is really important, because you want to try and keep that family unit functioning together and supporting each other. So again, it’s about knowing when that timing is happening.
And of course, if someone is unwell, as opposed to, you know, understanding that they’re going to die at some point just when they’re unwell, everybody should be able to talk about when somebody’s unwell, whether it’s the flu, whether they’ve got cancer, whether they’ve got something else, you should be able to say, look, you know, ‘your sibling is unwell at the moment’, you know, ‘Johnny is unwell’, and you know, ‘we’re going to take him to hospital, he’s going to get treatment’, talking about what’s going to happen, what’s going to how this is going to impact the family. You know, ‘we might be away for a few weeks, down at the hospital,’ or, you know, ‘we might have to pop in each day’, you know, ‘would you like to come each day?’ What does this look like.
It can also be scary, because, you know, as adults, we’re used to change. We may not always like change, but we’re used to things changing in our lives as we go through all those different milestones. For kids, often that security of their world when they’re young is their family and their home. And when that looks like it’s going to be rocky, and we don’t know how that’s going to happen, setting in place things that provide some security is going to be very helpful.
And whether that means you stick to a particular routine, or you develop a routine that everyone’s going to be able to work with, or you talk about the fact that there’s going to be change, but this is what’s going to happen when there’s going to be change. We’re going to sit around the kitchen table and talk to each other about it, you know. Putting in place plans and making sure kids feel they’re loved, and they’re cared for, and they’re still very important in this whole scheme.
Megan Gilmour 40:23
Yes, thank you for that, and that scaffolding there that you’ve presented is important. So, it’s what’s happening now. It’s what might happen. It’s if this happens, then we’ll deal with it then, in this way, those sorts of things.
And over here at MissingSchool, we have supported children with school connection to a digital connection into their classroom in a palliative care situation. And we can absolutely attest to, based on our data, that it is not only supportive for the young person in the palliative care situation, but also for the peers in the classroom.
And we just sort of, you know, back to what we’ve talked about to do with creating meaning together and being able to share and say things and engage now, is going to be helpful in in a future where that person’s no longer here, and that includes children. It’s not just for adults, not just the world of adults, it’s children as well.
Camilla Rowland 41:40
And children can’t always find the right words, either especially little children and or any of us sometimes. And so sometimes kids will act out. And acting out can mean that they go really quiet. So, what is the acting out that’s different from their normal behavior? And for teachers to look out for that and go right, ‘what’s happening here?’, which I’m sure teachers do all the time, ‘what’s happening here for this child?’ And there might be days where they’re frustrated but they can’t find the right words or the right time to say those words, you know, so they’re acting out that that frustration or that distress,
Megan Gilmour 42:18
Yes, and thanks for pointing out that acting out is not only the things that seem like bad behavior, but the quiet, the going quiet, and all of that, because often it’s that acting out that is causing contention or conflict in a situation that’s focused on, rather than that sort of, I suppose, going quiet, and withdrawing. So, this is such an important point.
We talked about data, and you might not have an answer to this, but what’s the current population of school aged children in palliative care? And how accurate is this data, or is it tracked, for example?
Camilla Rowland 43:10
Yes. So, we’ve only got the data for between 0 and 21. We don’t have the data broken down into age groups within school groups. So that’s probably a difficulty. But given that school age – if you talk about early childhood, it’s sort of probably from 4 to 18. You could probably say that a significant proportion of that 39,500 we were talking about in 2023, a significant proportion of that population is actually school age.
Megan Gilmour 43:49
Yes, I think we all know the answer to this next question, that do kids in palliative care currently miss a lot of schools and why?
Camilla Rowland 44:07
Yes, so if we look particularly at what are the reasons that most children die from in Australia, it was thought to have been cancer, but there’s a significant amount of disability data where children have died from congenital illnesses and diseases that wasn’t initially captured.
So, I think we could say that often for children with disabilities, and I’m talking about congenital illnesses and developmental disabilities that are life limiting, they are in care, if not palliative care, they’re in care of some kind for most of their lives.
If we were talking about cancer, we would be able to say, often it’s not for, you know, often years. It’s probably less for less years. But I guess the question I’d ask is, is that really important to know? Because at the end of the day, each person’s experience is different, and it’s just as profound, whether it’s six months, one year or five years.
The only thing I would say is, when it goes on for years and years, the level of exhaustion for families and parents will have increased, because it’s year in year out, and that will often have a really significant impact on their ability to cope and their wellbeing.
That puts them at greater risk of mental health issues. Because they’re doing – if you think about Carers Australia and what they say about carers, you know, for carers who are in that caring role for long periods of time, they’re at risk, a much more significant risk of mental health conditions themselves.
Megan Gilmour 45:59
Yes, our data shows that around 90% of people who come to us to solve the missing school dilemma, or to put it another way, to maintain that connection in some way to school – you mentioned before, children becoming depressed when they’re removed from their social environments and their relationships that are important to them and their meaning making in their community. So, our data shows that around 90% of those carers trying to solve that problem are mothers.
Does this gender difference show up in your data in the palliative care setting?
Camilla Rowland 46:45
So, we know that the majority of carers are women, and we actually get that information from Carers Australia, and whether it’s with children or older people, majority of carers are women in Australia, and so we think about the impact on them as mothers.
That’s not to say that fathers are not equally as caring, but we’re still in a period of time in Australia where, you know, we have both men and women working, mums and dads working, but the women still take on the bulk of the caring role day to day for children without illnesses as well. So often it is the women who are looking after children when they’re unwell and needing to leave work in some situations.
Megan Gilmour 47:33
Yes, and I just attached that to what you said a little while ago about the impact on the carer. In this case, we’re talking about mostly women, and that the impact of that caring, if it’s compounded across years, particularly in a palliative care situation, can be profound in terms of the deterioration of wellbeing and impacts as well. And that’s always going to have impacts in terms of engagement with school or with schools for children in palliative care.
As I mentioned before, and I won’t go back into it now, but MissingSchool has provided telepresence to children in a palliative care situation for them to reconnect with their peers until end of life. And the data is quite compelling. It’s reported to have been beneficial for everyone.
And for us, it highlights what’s important to children, as you mentioned before, even in that place where they are, where their health, the way they feel, and that the way the illness is impacting on them even, that they still ask and want to be connected to school, says so much. So, I just leave that there for people to think about.
What are the critical times in a kid within palliative care’s school life? Would you say?
Camilla Rowland 49:20
I think that, and I’ve noticed we’re running out of time now too. But I think the critical times are connecting with the school and your teacher when you’re diagnosed. So that’s even before it’s palliative when you’ve when you’ve been diagnosed as serious illness. I think it’s really important that the teachers know the school knows, and your friends know.
And that’s at the time when the support really needs to start, and that care planning, so thinking about the planning, what’s the role of the school in that? What are the options and the possibilities for the children to remain interconnected with their friend, for the teachers to remain interconnected with that child or young person, so that they know they can continue their learning, which is just a normal part of routine and life, and then to think about the family, as progress happens or as change happens, keeping everyone in the loop around that in the school, so that they’re part of that continuum of care. It’s not just a one off ‘here’s the information, this is what’s happening. And now we’re at the end.’ It’s keeping that school as a community involved.
Megan Gilmour 50:39
Yes, true. So important. And I’ll just slip in there, the need to recognise vicarious trauma experienced by teachers in this situation as well. And I’m sure, as you’ve mentioned, that you do have resources for schools and teachers. So, another shout out to head over to your organisation and grab them.
We are at the end now, is there anything that we’ve missed or that you’d like to add to this question of school quality of life for kids in palliative care?
Camilla Rowland 51:16
I think that one of the things we can do in our communities, is ensure that teachers at schools, have opportunities to talk about this with their peers, with the principals and deputy principal to say, when we have children who are diagnosed and we hear that that’s going to be life limiting, what are what are the plans that we can put in place? What’s the system that we can put in place? And how do we support each other?
Because we get to know these kids, we form relationships with these kids, and you know, they’re part of our cohort, usually, often for at least a year. You know, how do we deal with this on a personal level as well?
Megan Gilmour 51:55
Yes, very important. So, we’re really wrapping teachers into the palliative care setting and situation here, not leaving them out. In fact, we’re talking about all people who have a connection to that person, to be able to have the opportunity to play their role in quality of life and to also get to have their input to what they want to say and what they want that person to know.
Camilla, what’s your call to action for palliative care in seven words or less?
Camilla Rowland 52:39
Seven words or less is really hard for me!
Megan Gilmour 52:42
We won’t hold you to it any I would say [laughter]
Camilla Rowland 52:44
I would say that we want to ensure that everybody has timely access to palliative care when they need it.
Megan Gilmour 52:52
Thank you. Thank you so much for this generous conversation and the work that you do. I found it a particularly supportive conversation for me personally, and I’m sure anybody who listens to this will find it supportive.
And so, we want to thank you, Camilla, but also shout out to Palliative Care Australia, and you can find them at www.PalliativeCare.org.au [https://palliativecare.org.au]. Go there. Give generously. Know that there’s resources there, there’s people to contact and people to provide this incredible support to help us all navigate life better.
Thank you for joining us today on Live & Learn Camilla.
Camilla Rowland 53:49
Thanks very much for having me. Thanks, Megan.
Megan Gilmour 53:51
Thanks everyone for tuning in. Help us turn up the volume so all kids are seen and heard. Follow along, like, share, comment, or leave us a review, because we love hearing from you. And if you want to donate, head to missing school.org.au, because every dollar makes a difference.
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