Don't Be Caught Dead
Welcome to Don’t Be Caught Dead - a podcast encouraging open conversations about dying and the death of a loved one. I’m your host, Catherine Ashton - Founder of Critical Info - and I’m helping to bring your stories of death back to life.
Because while you may not be ready to die, at least you can be prepared.
Don't Be Caught Dead
Embracing Life to the Fullest End with Camilla Rowland, CEO Palliative Care Australia
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Today, we're joined by Camilla Rowland, CEO of Palliative Care Australia, who brings decades of experience in transforming palliative care practices and perceptions.
In today's discussion, we delve deep into the holistic approach of palliative care—how it integrates into our healthcare system and what it means for individuals facing life-limiting conditions. Camilla sheds light on how embracing the realities of death can enhance the quality of life and why early conversations about end-of-life care are crucial.
Key Takeaways from This Episode:
- Understanding Palliative Care: Camilla provides insights into the essence of palliative care, which is not merely about managing the end of life but about enhancing the quality of the remaining life through comprehensive care that addresses physical, emotional, and spiritual needs.
- Breaking Taboos Around Death: We discuss the importance of normalising conversations about death, especially in a post-COVID world where awareness of mortality has heightened. It's about shifting perspectives from fear to acknowledgment and preparedness.
- The Importance of Advanced Care Planning: Learn why it’s critical to plan for the end of life, much like we plan for other major events. This planning includes understanding the trajectory of terminal illnesses, the potential impact of treatments, and ensuring that wishes regarding end-of-life care are respected.
Links and Resources:
- Palliative Care Australia Website: www.palliativecare.org.au
- Resources - Advance Care Planning Australia
- Episode Transcript: Full transcript available at www.dontbecaughtdead.com
Join us as we continue to bring the shadows of death into the light, encouraging everyone to talk openly about the end of life.
Remember; You may not be ready to die, but at least you can be prepared.
Take care,
Catherine
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Matters of life and death is really a phrase which captures where we're at in our society about thinking of not just about matters of life, but matters of death. So if we, if we think about death as being one of the last taboo topics, we want to break through that. You know, we now talk about mental health, we now talk about sex. We should be talking about death on an ongoing basis, particularly post COVID where people's mortality was very much front of mind. So let's, let's take that conversation forward as a society and say, we'll all die one day. Let's make it, if we can, a really great quality end of life experience. But, but more importantly, let's live until we die. Let's not go, I'm going to die in a year or two years of this particular diagnosis, and I'm only going to focus on the end. Let's make sure that we do our planning and think about what we can do about quality of life. What's on our bucket list? Who do we want to see? Who do we want to connect with? Because matters of life and death is really about saying to people, think ahead, start to plan, think about who you want to have around you, think about your relationships. Because I can tell you, if you talk to anyone who's ever worked in palliative care, they will always say to you that as people are preparing to die, they always say the most important thing to them is about the quality of their relationships with the people they love.
Catherine:Welcome to Don't Be Caught Dead, a podcast encouraging open conversations about dying and the death of a loved one. I'm your host, Catherine Ashton, founder of Critical Info. And I'm helping to bring your stories of death back to life. Because while you may not be ready to die, at least you can be prepared. Don't Be Caught Dead acknowledges the lands of the Kulin Nations and recognises their connection to land, sea and community. We pay our respects to their Elders, past, present and emerging, and extend that respect to all Aboriginal and Torres Strait Islander and First Nation peoples around the globe. Camilla Rowland is Chief Executive Officer of Palliative Care Australia. For over 30 years, she has worked in the Australian health and community service delivery and advocacy sectors in CEO, executive, clinical and education roles. Camilla has worked with agencies in national, state and local government. rural and metropolitan areas. She is passionate about quality of life issues and building community and sector capacity through a collaborative approach with partner organisations and governments. In 2023, Camilla was appointed as Adjunct Fellow at University of New South Wales. Her background fields are in palliative care, age care, disability services, drug and alcohol, child, youth, and family services, and mental health. She also has significant experience in industry workforce development and has managed registered training organizations. Camilla has been engaged on community sector and health sector boards and committee roles in rural, urban, regional, state and national organisations. This work has been with advocacy and sector capacity building organisations such as Playgroup Australia, Alzheimer's Australia, ACT, the National Complex Needs Alliance, Council of Social Services and Families ACT. Her board experience is supported by her qualifications as a graduate of the Australian Institute of Company of Directors. Camilla completed the Executive Masters of Business Administration in 2019 and was nominated for a Dean's Award. Her other qualifications are in social work, adult education, human resources, and executive leadership. Thank you for joining us, Camilla.
Camilla:Thank you. It sounds like I need to get a life. Thanks, Catherine. Really a pleasure to be part of it.
Catherine:No problems. Now, the vision for Palliative Care Australia is, as stated on your website, quality palliative care for all. What is palliative care?
Camilla:That, that is a really interesting question to many people in society because people don't often want to talk about it until they need it. So palliative care, in layman's terms, is really end of life care. It's that care that people It takes place, it's an international model of subacute care and it takes place from the time of diagnosis through to death and beyond death. So it's a mixture, it's a medical specialty and it's a mixture of pain relief, symptom control, working with people to meet their social and emotional needs and their spiritual needs. So it's very holistic as a subacute care model. Operates in most Western countries in the world and some, some developing countries as well. Uh, Australia and the Southern Hemisphere would be seen as one of the leaders in palliative care. And so it's a medical specialty that nurses, doctors, uh, social workers, allied health, uh, all work in and plus volunteers are very important part of palliative care as well. So really palliative care comes in and out of someone's journey as it's needed. So that is. the discipline of palliative care. How it's funded and delivered is a different question that I know we'll talk about.
Catherine:Fantastic. And at what point do people access palliative care services?
Camilla:So The model, the clinical model of palliative care says internationally that palliative care should start at the time of diagnosis, when it's known that the person's going to have a poor prognosis, or in the words that you were saying to me earlier, know that the condition will be terminal. The reason for that is you're introducing a group of people into someone's life, a team of people that will be there to support the person through various touch points in that journey. It doesn't mean that once you have palliative care, that you, it's there every day, you know, for the rest of your journey, which could be months or years for some people. It just means it comes in and out as required. And it's better to introduce that earlier on than say in the last few weeks or month of life. However, in Australia, currently, we have a bit of a postcode lottery. And that is that you can access palliative care, specialist palliative care in some areas and not other areas of Australia. So it's very funding dependent. Palliative care in Australia is co funded by the Commonwealth Government and the state governments. And so it will depend on how much is invested into each of those local health districts across all the different states and territories. The issue is that we know there isn't enough investment. We know that only 60 percent of people who have life limiting illnesses in Australia access palliative care. And that, that's a concern because you want to ensure that everybody can access end of life support, that nobody goes without having that support, particularly for pain management and symptom control. I often use the analogy is that you don't expect people to enter this world without care and support when you're giving birth. You shouldn't be expected to leave this world without that care and support. Having said all that, you have sort of two different groups of people that can deliver your palliative care. One is your specialist palliative care services, and they're often connected into government. Hospitals, and not for profit hospitals, and that can be delivered either in hospices, which are sort of like stand alone bricks and mortar, a place that's a combination of your home and a hospital environment, or you can go to palliative care beds in hospitals, or you can die at home. And I have to say, research shows the majority of people want to die at home. That's not always practical for people, because to die at home requires that you have a network of family or friends or people who are close to you around to support you, particularly in that last month of life where it's very intensive in terms of the care that you might need. So then that's specialist palliative care. And specialist palliative care generally gets involved where people have complexity and that they need quite a significant amount of symptom control and pain management. Then you've got other health specialties that deliver palliative care, like oncology, oncologists, um, um, dot GPs. GPs are absolutely integral in care of people who have, like, diagnosed with life limiting illnesses. And then you have lots of other health specialties as well that might become involved. So they, in this essence, are delivering part of that palliative care approach in that journey. Community nurses, a huge part of that. Death dwellers, can also be a part of that. Uh, so we need, really need to remember that it's not just specialist palliative care, it's also these other health sectors that are engaged in providing that end of life care.
Catherine:So it sounds like it's, it's quite a web and network that's actually involved in this, this palliative care model.
Camilla:Yeah, it's actually become more of a network and I would also add in aged care. So the aged care reforms have resulted in three major changes for the aged care sector going forward. The Aged Care Act has palliative care embedded in it, so anyone who delivers aged care, either in home or in an aged care facility, or what some people call a nursing home, they'll have be required to deliver palliative care. components of end of life care. In the aged care standards palliative care is now embedded and in the aged care funding instrument through My Aged Care, palliative care is also embedded in there. I think the challenge will be the implementation and is there sufficient funding to ensure that everybody who has a life limiting illness gets the level of support they need both in home and also clinical support. So in home care and clinical support together is what will enable people to die at home or die in other places of their choice.
Catherine:And that's the current state of play that we're even having challenges or you're from what I'm understanding you're saying is that we have challenges with funding, what our requirements are, and yet we know that the figures are forecasting an ageing population, and You know, I believe it's double,
Camilla:is it, is it not? Oh, absolutely. We're expecting, so CAPMG did a report in 2020, which projected that the figures of people requiring palliative care would double by 2050. And in fact, we know since then, particularly with the advent of COVID, That it wasn't people dying of COVID, it was people who didn't get diagnosed and treated with other life limiting illnesses. That in fact, the increase in the numbers of people with life limiting illness dying has increased far more dramatically than we thought it would since COVID. And so we are probably going to see those figures by 2035, 2040. So we're not, not far away, we're talking 10 to 15 years. And so we can't even meet the need now. What's that going to look like? by 2035. And it's interesting because well known commentators on health and economic needs. People like Bernard Salt have even, and who writes for the Australian and Financial Review, have even said recently, we have this tsunami of ageing coming upon us now. We're not even prepared for that as a nation. We haven't planned ahead. We knew this was coming. We haven't planned ahead sufficiently yet, uh, for all the baby boomers. Coming through, which is obviously a very large section of our population. And we know that internationally as well. There's an international conference in May in Singapore, which is going to address the aging crisis we have globally. And Australia is a very big part of that. And really, we need to go, how we, we need to think about how we actually going to plan for this future, not just deal, not have governments, just deal with the now, because we can't even meet the need now. So how are we going to deal with this in the next 10 years to plan for this huge increase in the number of people aging so that they're supported to be in community rather than continually being diverted across into hospitals, which is not only economically not viable, but it's socially not a great outcome either. People want to be in their communities and they want to be at home in the main.
Catherine:And obviously, there's also that rise of awareness in elder abuse as well, uh, that we've seen certainly being reported more regularly in newspapers of late. And what impact does those sort of figures have on, on those incidents of elder abuse? Is that likely to increase? Do you think?
Camilla:So the factors that go into elder abuse are not necessarily connected with palliative care directly, but we know that if carers don't get sufficient support, carer health is at risk of breaking down, mental health, physical health, and that is when The pressure goes on the extended family as well and how far people can cope and not cope is very contingent on how the person they're caring for is going as well and how much time is required to care for them. So let's be really honest and say, you know, really often in the last week to two weeks of life, people need, I mean the main significant amounts of time of care, 24 hour Care often. And so if you're going to tackle that as a family and care for someone at home, you also need other services to come in and support that. Other community, might not just be in home care like personal care and housework. It might be community transport. It might be people taking you to appointments, which could be community transport. It might be people providing that social outlet for you for quality of life. You know, coming to talk with you, sit with you, you know. engage you in things of enjoyment. So that's the patient, but also the carer. So we really need to be thinking ahead about what does this respite need that's going to emerge as well. So there's a whole range of service types that are going to be impacted for this tsunami of older people. And obviously by the time I'm old, I want to ensure as well that those services exist and they're embedded in our DNA and in the, in society. I feel like I might have gone off track from your question.
Catherine:No, no, no, that's,
Camilla:that's. So really it's impacts on the caring that put elder abuse at risk of increasing.
Catherine:And just going back to some of the things I'd like to ask, there's a few scenarios that have been presented to me in the last few weeks and months that I'd like your opinion on. One was that a woman, uh, that I had worked with previously, she has been diagnosed with bowel cancer, and it's terminal bowel cancer. Uh, and when I spoke to her, she had received the diagnosis, but she was still feeling very much, you know, like she was physically fit, uh, she just finished up work, uh, and she wasn't sort of what she traditionally thought would be palliative care. What sort of services are there for someone like her, who is sort of in that in between stage?
Camilla:Yeah, that's, that's a good question. That's a extremely variable response that I'll provide because it will depend on where she's living as to what's available in her area. So the first thing is about her diagnosis, and given that it's, uh, she's been told it's terminal, the best thing that we would say is actually reach out and talk to somebody now in a palliative care service about What might be available down the track in her area? Because it's good to start reaching out while you're feeling well enough to start reaching out and making those connections. Starting to think about what in home care is available in her area that as she starts to deteriorate or decline, what sort of cancer nursing? Is there available in her home, in her home area, what's available at a local hospital? What's a avail? Is there a hospice close by when she may need that towards the end?'cause most people now are only going to hospices for the last couple of weeks of life. Um, and really the principles would say you should be able to go in and out of hospices as required, including respite. If you need respite from your carer or your carer needs respite. So. It's starting to plan now. It's that advanced care planning. We're great advocates for advanced care planning, starting to think ahead. And she might have months, years, she might have weeks, but it doesn't even matter if it's years ahead. She should start thinking about what has she got in her area. What is, what is the available resources within her family and her extended family to support and her friendship network to support her as well. So it's thinking about all those aspects of your life where you may need support. And. Thinking about it ahead of time is going to be really helpful for you for when you'll get to that point where you start to feel unwell and you don't want to have to deal with a whole bunch of new people and new services at that point. You've already done that planning ahead. You, I would have hoped that either her GP or her oncologist would have said to her, it would be great for you to start planning ahead and thinking about what your advanced care plan will be, starting to connect into those services and perhaps I can even refer you to which is the service in your area that you can connect with.
Catherine:And just a point that you, I, you mentioned then, Camilla, was, um, respite for carers as well, so using hospice as a service that the, the, the, the client or the, the patient or the person with the, the life limiting illness can, can go into a hospice. And is that for the purpose not? because they might be unwell, but well, I'm assuming they would be unwell, but just to give the carer a break, is that also an option?
Camilla:Some hospices do provide respite and some don't. So she'd need to find out in her area what her local hospice does, but there's also in home respite that can be provided as well through. So if you're over 65 through My Aged Care, you'd be eligible. For respite, if you're under 65, so we've got a bit of a gap at the moment, if you're under 65 and you don't have a functional disability, you may not be eligible for the NDIS. And each state and territory has different levels of funds allocated into, um, They're into their CHSP funding, which is about the in home care funding for people who really need help at home who have illnesses. That may or may not be available in the state in which she lives, depending on how much they have funding available. So it's actually state governments who are responsible for that in home care support if you're under 65.
Catherine:And so given the fact that there might be variances in services available within your region, you mentioned the postcard postcode lottery previously, do you suggest that it's wise to perhaps try and ensure you have a strong support network of friends and family who can support you if you are diagnosed?
Camilla:Yeah, absolutely. It's very difficult if you're a person completely alone with no network. It's very difficult and sometimes that requires people to move to where their family or their friends are. I had a scenario last year where a good friend of mine was flying from where she lived into Adelaide. every month to provide respite for another friend who was caring for a single fellow with no family. He had no family, no close friends in Adelaide, and he was dying of cancer. And for those last six months of his life, he needed quite a lot of support. He had pancreatic cancer. And so she would fly in every month. for a number of days to provide her friend with respite. And so the fellow who died, it was really, really difficult because they couldn't get the level of support that he needed from the health services in Adelaide. And, and so it was left to friends to try and care for him as for as long as possible in home. I think in the end, he actually went into hospital for the last week or two of life. But, you know, it was just wonderful that my friend was able to keep flying into Adelaide every month and could afford to do that to give her other friend respite. So we hear of many cases, many cases, all the time anecdotally, where people are missing out on the level of care that they need in home. Both normal in home care, when I say normal, I mean personal care, you know, housework, all that sort of, you know, support in addition to specialist palliative care services because there's just not sufficient resources.
Catherine:And do we really know the actual figures? Do we have the data on, because I know there was another case where I spoke to a woman earlier this week who is caring for her father, uh, who is in a regional area in Victoria, and that's seven hours away from where she, she normally resides. Uh, and so do we really know how many people are actually in this scenario of leaving their normal place of residence, going and caring for a loved one? You know, the fact that someone was actually paying for airfares to fly to give someone else relief. Do we really know what the actual cost of this is?
Camilla:No, we don't. And that's not data we've collected. We, we believe we should be looking at, so we know the data of how many people die each year of life limiting illnesses. And we then know how many are receiving palliative care, accessing specialist palliative care. So we know that only 60%. are receiving palliative care. So where are the others going? We suspect that they're ending up in hospital and perhaps in aged care facilities, noting that not all aged care facilities provide palliative care. In fact, it's a very small percentage in Australia. Um, it's growing, but it's a small percentage in Australia that have palliative care embedded in their systems. So we, we, we know the number of people who are potentially missing out on palliative care right now, but we don't know how many carers are traveling. And. what the cost is, but we know in rural and remote areas that the situation is much more extreme than in the cities. There's still postcard lottery issues in the cities too, by the way, the capital cities, but, uh, in rural areas, often it's just the GP and community nurses, and there may be an outreach palliative care service in more populated rural regions, but often people are having to travel for their care, or it's left to local community. You know, to look after people. So the, the responsibility of family is pretty significant. And I guess that leads the question is, how much is the responsibility of family and how much is responsibility of the health system? And I don't have the answer to that, but I know that we're a nation where social justice is really important and everybody should be able to access that. the level of care that they need at end of life. So I don't think there's any question that that principle is really important. We don't expect people to die alone. We don't expect people to die in pain. We don't expect people to die with unmanaged symptoms. And yet we know that's happening.
Catherine:Given the challenges that you've outlined, what are the sort of questions that that people should ask to find that if they are diagnosed with a terminal illness, to find the care facility for them and their family, or even if they are by, by themselves. What sort of questions should they be asking?
Camilla:I think it's, I think it's a combination of two things. They're trying to find out what's located in the area, but they also need to advocate for themselves. So at Palliative Care Australia, we're constantly advocating for the investment that's needed to bring us up to standard in Australia of, of, access to quality care for all people that need it. So, I would say that the more people can advocate for what they need, if it's not available, advocate to their local federal members, their local state members, then we'll get push from the community to get more investment. Because death and dying is still a really taboo subject. And for many people, they don't want to think about it and talk about it till it affects them. It's very difficult to get broad community advocacy happening for change to have more investment in quality palliative care. So I make that point because when people are searching for what exists in their area, if they find that there isn't a palliative care service in the area, then they need to advocate. because there should be some level of palliative care that's available where they live in their rural areas or in their cities or their towns. So, you know, even if that's an outreach palliative care nurse or a visiting doctor that comes out, it may not be sufficient. Tell them to have a look. We have a national palliative care directory on our website. The states and territories Uh, bodies, so palliative care New South Wales, palliative care Victoria and all the ones around Australia. Also, uh, good to find out information about what exists in their area and trying to tap into that. So what exists in your area? If it doesn't exist, then advocate because there's not enough advocate advocacy going on from people in the community at this point.
Catherine:And given the fact that from my understanding in relation to perhaps sometimes when people get a diagnosis, there's perhaps very short period of time from diagnosis to actually needing palliative care services, uh, where they're, they're needing to be cared for. Do you suggest that it is probably advantageous for people to, you know, pay attention to what's in their area now before they even need it?
Camilla:Yeah, I think so. I think that there is. It's a concern that if you wait till that last month, that there may be waiting lists, there may be difficulties in accessing things as soon as you need them. So to prepare ahead is really important. And to think about where, where do I want my final months and days to be? Where do I want to live? Do I, do I want to be in a hospital? Do I want to be in a, Uh, at home. I know that in my own situation when one of my family members died during COVID, who was an older person, she was very concerned about going back home because she felt she wouldn't get the level of care needed in home because of where all the services were at during COVID in terms of lack of availability. So she ended up going into hospital and she was, she never left. She was there for six weeks until she died. And she had different services within the hospital providing her end of life care. Now that's not optimum either, because you don't find that all nurses and all doctors are trained in palliative care. So, you know, they would treat the condition to keep her comfortable but wouldn't necessarily have a great understanding about how to treat the symptoms. So that she had a comfortable end of life.
Catherine:And is that something that we should be perhaps introducing in the training of, of doctors and, uh, you know, other nurses at their graduate level?
Camilla:Yeah, so in, in undergraduate courses, there is an introduction to palliative care in medical degrees and in nursing degrees, but it's not enough. I guess. If you think about if you're a doctor or a nurse, you have a bombardment of different specialties you have to learn in your undergraduate degrees and think about. And if it's only one tiny part of the whole qualification, it really relies on when they're doing their professional development and postgrad. qualifications and there's lots of different programs that have been developed. The Australian government's funded a lot of those and they're excellent. You know, we've got end of life directions in aged care for aged care workers. We've got the PEPA program, which is the program of experience in palliative care, that Enables people to go into and work in a palliative palliative care team for doctors and nurses to get more training and understanding of what it's like to work in palliative care. We have reverse PEPA, which is where the PEPA trainers go into sites and train the staff on those sites as well. So, and there's lots of different postgraduate qualifications available, you know, that people can do if they have an interest in working in palliative care. Having said that. We do have an issue, like most of the health workforce, that we have an insufficient number of allied health nurses and doctors working in palliative care to meet the need now as well. So with that health workforce crisis, that Many of the peaks talk about is very real and it's just going to grow unless we have some, you know, greater investment in thinking about what are those skills needs, you know, things like not charging HECs for those qualifications, making sure that people are backfilled when they can go. Um, and do their training. I was talking to a, an MP last year who said to me that their husband was a GP in a rural area in Australia, and that every time they wanted to do professional development, they had to go to the capital city of their state. And that meant that they couldn't be backfilled in their local area. There was no money for backfilling. So they just didn't access the level of professional development that they would have liked. including palliative care, because they're unable to get away, because there's such a shortage of GPs in rural areas. And,
Catherine:and that might also give some insight to a scenario that, uh, was mentioned to me this week that, uh, a woman, the woman that had actually, you know, traveled seven, seven hours from her home to take care of her father. Uh, she was there when her father was diagnosed as being terminally ill. And that was, he has, has cancer. Uh, and that was an appointment with a neurologist, uh, and then a neurosurgeon was a second appointment. And then it was the third appointment that was the oncologist. And this, as you can imagine too, in a rural area, trying to get into these appointments, uh, was quite a period of time between each of these appointments and. She voiced frustration to me that, uh, she, her, she knew that her father was terminal, but she didn't believe that any of the neurosurgeon or the neurologist had actually mentioned that he was terminal to him directly. Have you heard of scenarios like that?
Camilla:Absolutely. So I think that There's a number of ways these scenarios unfold. One is that you have doctors, whether they be specialists or GPs or other, that give really clear communication. And so when the patient goes in, the person goes in and they might have a carer or other family members with them, everyone walks out of the room with a really clear understanding with where their illness is at. So that's great. But we hear more commonly scenarios still occurring where doctors might use jargon, that medical jargon, that they feel they've told the person in a medical way about what's happening and that person's gone, don't understand that, but okay, it sounds like everything's going along okay and then leaves. And then you have another scenario where they have explained to that person, but that person's in shock and they don't absorb everything. So if you think about, when you're given that sort of news, it can be highly distressing. And when I worked as a social worker in palliative care, I commonly found that when I spoke to the families and I said, to, you know, different family members and the patient. Tell me what your understanding is about where your illness is at and what the doctor said. In that room, you can commonly find that people had different understandings of what was said at that meeting. And so part of my job was to make sure everybody was on the same page and that they all understood that, you know, understood together and collectively where that person's situation was at. And then you do get doctors who don't give the information for. whatever reasons, either they're not confident that that person is now going to become terminal, as you said, one day. And so they're just holding back till they're absolutely sure, and that can be then too late in terms of providing that information. You know, I've never come across a doctor who doesn't care. I think people just have different abilities to communicate. And then on the flip side of that, people who are at the other side, who are the family and the patient, digest information in different ways. I actually had that happen in my own family when, um, my mother was diagnosed last year that we had a number of us who walked away from what we'd been told by nurses and doctors with a different understanding. It took a number of conversations for us to all be on the same page.
Catherine:So would you say that that's also a key thing, uh, perhaps that when you are, uh, attending a, a doctor's appointment, uh, and especially if it's a specialist appointment that you're waiting on a diagnosis, that you have someone go along with you just so there's someone to talk to, uh? Yeah,
Camilla:absolutely. And look, even simple things like either writing the questions down before you go in. and preparing yourself and going in and asking the questions of everything you want to know and then writing the answers or doing it if you're, if you're technologically, you know, experienced doing it on your phone or whatever. But being prepared because doctors are very busy people and often they give you, You know, allocations of 15 minute, half hour slots, you know, so everything happens in a bit of a rush quite often. So making sure you've got those questions with you and writing down the answers and clarifying. So you've said this, does it mean that? Is that what you're saying? You know, making sure you clarify if you're unsure rather than just going, all right, they've just said that. Okay, I'll just take that away and I'll Google it or whatever.
Catherine:Yeah. And you mentioned your role as a social worker. Is that one of the allied services that you could reach out to if you have been diagnosed with a terminal illness and you, you need support?
Camilla:So I think what's happened with funding, is I'm commonly hearing there's less and less allied health money. So, I know when we talk to palliative care social workers Australia, there's far fewer social workers in palliative care now than when I worked in palliative care 25 years ago. So, that leads us to think that there's much more investment happening into the nursing and the medical and less into allied health. So I was part of a specialist palliative care service and, you know, I'm still coming across social workers who were, who are part of specialist palliative care services, but quite commonly what I'm also hearing is that they have other roles in the hospitals, so they won't just be working with the palliative care service, they might be working with a whole range of other areas in the hospital. So I think that means there's a resourcing issue there as well.
Catherine:Is there like patient advocacy services that perhaps someone could use?
Camilla:So that again is a bit of a postcode lottery as to whether there's patient advocacy services available.
Catherine:Okay, okay, that's good to know. So it really does seem to me from our conversations that having a good network of support of friends and family, if you can, is really key if you're diagnosed with a terminal illness.
Camilla:Absolutely. And look, regardless of what specialist palliative care services are available or other palliative care services through GPs, you'd be amazed at the number of activities that you might need support with. As your, as your illness progresses, so just things like shopping, you know, getting to appointments, doing the washing, you know, uh, attending important events with family and friends, having someone there with you, uh, if you have equipment with you. You know, because you're now in a situation where you need either walkers or you need, you know, other sorts of equipment, a syringe driver with you or whatever that might be, having someone that can help support you at that time, those events. So it's really, like any other very serious illness, when you're unwell, you need a range of different supports to, to help you. Thinking about who is best placed to do that. We know that, It's from organizations like Aging Asia. We know that in different parts of the world and including Australia, that in previous generations, it would be the daughters primarily that would look after aging parents as they become palliative. But what we now know is that people in their 50s like myself are no longer providing Or can no longer take big periods of time out of work to care for older relatives as they're dying because we're all having to work full time to sustain. You know, our mortgages, our, our lifestyles, and we know that, you know, social benefits, Centrelink benefits are not sufficient for most people, particularly living in cities where rent is expensive, to be able to take time out of work and go on Centrelink benefits to care for someone. So, we, we have less and less people. errors available.
Catherine:And, um, I know that we have spoken in the past, Camilla, about, um, those people that are technologically savvy. There is a tool that you've been working on with La Trobe University and Andrea Grindod there. Can you tell me a little bit about that? Because that seems to be one of the key things about the, the tasks that you can get help with from someone who's not an allied service, but more family and friends.
Camilla:Absolutely. I mean, obviously Andrew's a good person to talk to about in more detail about the help app, but the help app has been developed with funding from the Wicking Trust and that app is going to be one that assists you to find out what networks you have in your area and how they can assist you. And it actually is almost like a, a walking tablet. of information that talks and helps you to think about what you might access where and when, and helps you to put those connections in into your specific community. And so, for example, say that you had a library that had a support group, you might say, oh, that support group for grief and loss, that might be really great for my carer. So, you know, if I have a family carer, so we might put that into the app, because that's something in my particular area that's really helpful. There might be something at my neighbourhood centre. Or there might be a community transport option for me as someone who's palliative, you know, because most community transports for people with disabilities or people who are older. So, you know, there may be flexible options in my area. So it really helps you gather, to gather all that information and have it in one place. And it also helps you to connect in with those people on that app, through that app.
Catherine:Fantastic. And that can just be downloaded on all of the usual app platforms, I'm assuming?
Camilla:Yeah, so I think it would be great if you were to be able to provide the information through your website on connecting through to the help app and Andrew's program.
Catherine:Fantastic. More than happy to do that. Now. Thank you. Bye. Palliative Care Australia has recently had a bit of a brand refresh, I noticed, uh, and there's a tagline now saying, Matters of Life and Death. Can you talk me through that phrase and what it personally means to you?
Camilla:Yeah, so the rebranding came through an evolutionary process. We developed the heart symbol. Which is based on an emoji, which is about care. That particular emoji is about care. It's not about romantic love. It's about care and it's a marigold color. And we trialed it last year during National Palliative Care Week. And we had such an incredible response. Uh, we'd captured pictures of federal MPs all wearing it in, in Senate and, uh, in the House of Representatives during sitting weeks. And. There was just an overwhelming response to it, that it really captured what people were thinking about in terms of people close to them. So, the, the heart is going to be our symbol for National Palliative Care Week, but we're also going to rebrand. Our palliative care Australia and most of our states and territories will also start to use that, that heart as well. Matters of life and death is really a phrase which captures where we're at in our society about thinking of not just about matters of life, but matters of death. So if we, if we think about death as being one of the last taboo topics, we want to break through that. You know, we now talk about mental health. We now talk about sex. We should be talking about death on an ongoing basis, particularly post COVID. where people's mortality was very much front of mind. So let's, let's take that conversation forward as a society and say we'll all die one day. You know, let's make it, if we can, a really great quality end of life experience. But, but more importantly, let's live until we die. Let's not go I'm going to die in a year or two years of this particular diagnosis and I'm only going to focus on the end. Let's make sure that we do our planning and think about what we can do about quality of life. What's on our bucket list? Who do we want to see? Who do we want to connect with? Because Matters of life and death is really about saying to people, think ahead, start to plan, think about who you want to have around you, think about your relationships, because I can tell you, if you talk to anyone who's ever worked in palliative care, they will always say to you that as people are preparing to die, they always say the most important thing to them is about the quality of their relationships with the people they love. And that is what the meaning of life is. is about. You might have other things that motivate you in life, whether it's your work and your career, whether it's your family, whether it's your footy team, whether it be rugby or AFL or soccer, whatever that might be, or nipple. But, you know, it's, it's, It's one of those things that give you a real quality of life. And let's, these are the matters of life and death. Let's talk about all those things. Let's, as a society, start to embrace those discussions and make sure at the same time, we have those clinical services that you might need at various points in your journey to support you. So this year, National Palliative Care Week, which is the 19th to the 25th of May, it's always about around the same time each year, we're going to take that matters of life and death. logo. And we're going to talk, really focus on the people at the heart of palliative care. We're going to have case studies and scenarios and people talking about their own experiences so that the broader community and the broader health workforce can see how palliative care actually is delivered and what's involved. We know from market research that most people in Australia know what the term palliative care means. They think of it, They think of it as equals end of life care, right, so it's a bit bigger than that but generally they know roughly what it means. What they don't know is what's involved and so this year our focus is going to be really delving into what can be involved in palliative care during National Palliative Care Week.
Catherine:And that's perhaps a good segue to ask, what have you done to prepare for your own death, Camilla?
Camilla:Well, do you know, my husband and I redid our wills last year, and we lost three parents in three years between us. And we really learned from a lot of their experiences about what worked and what didn't. We've had discussions within our own immediate family about what the sort of things we'd like to have in our funerals or we think would be, you know, a way to celebrate our lives. We've talked a lot about, and which is really important that, you know, the family's all on the same page. Uh, and, uh, I think although we don't have advanced care plans yet, we've definitely tackled the organ donation discussion. And so we're really clear in our family about who wants to donate their organs and who doesn't and which organs, etc. And I think we are, as a family, of course, I've worked in palliative care, you know, like, I've been involved in and out for decades. My family can't escape discussions about life limiting illnesses, preparing for death and dying. So we have lots of open discussions all the time. We've talked about where we'd want to die and what that might look like. And it's not all morbid. Sometimes they're very funny discussions. But in fact, with our children, who are now adults, it's actually also good for them to know what, what we would like. And to start to think in those years to come, you know, how would they support, what would that support us, what could that look like and what, what isn't going to be available, you know? So yeah, we've, we've had lots of discussions, but I commonly come across families of friends of mine who don't want to talk about it still. And I think, you know, we're, I'm part of an era of people that talks about things a lot more openly and I say to them, have those discussions. You know, what does that look like? It's really the, and the baby boomers should also be more open. They're a much more open generation. It's the older generation before then, after, before them, that really death and dying is extremely taboo. And look, there are some things about death and dying, which are. You know, if you die when you're older, that's often less sad because it's a life lived well. And it's, you'll always miss those people, but it's not as traumatic. Losing a child or a sibling when you're young can be really traumatic. And I don't want to ever underestimate the type of level of support that's needed in those situations.
Catherine:Uh, it's interesting that you mentioned that because I was just going to, to talk about that in July last year, uh, you released a report, or not a report, but the Pediatric Palliative Care National Action Plan in partnership with Pediatric Palliative Care Australia in New Zealand. I believe it was the first of the kind in Australia that was released. Can you talk me through the significance of that plan and the impact it'll have on, you know, people with life limiting illness and their families?
Camilla:Oh, look, I mean, it was just incredible. That was the result of three years of a project to work with clinical stakeholders, families, and some patients themselves, some young people, researchers. politicians, government departments at state levels and at Commonwealth level to talk about what this needs. Now, while it might be a relatively small group of somewhere between eight and ten thousand young people and children who die each year, it's really important that we connect all the services together for them at that point. So, it's got bipartisan support, so both the Liberals, the previous Liberal Health Minister initiated it, Greg Hunt, the development of it, but I'm really delighted that Mark Butler, in the current Labor government, has has also then rolled out another project of a series of activities that help support the implementation of that plan. And that plan is of course a big national strategic plan about how do we ensure that A& E or ED and hospitals, so accident and emergency EDs, connect in with um, paediatric wards, connect in with specialist areas such as oncology. And I say oncology because the majority of Children who die that are recognised in terms of capturing data about children with cancer, but also children with disabilities who have life limiting illnesses as well. How do we ensure the disability sector works with the health sector, works with all these different components of health to make sure that the journey for the child and young person and their family. is as positive and as smooth as it can be. And interestingly, one of the things we haven't mentioned is that palliative care goes beyond death. It's actually about grief and loss support also for the family post death. And so we need to ensure that we're providing those, those families with, with the options of getting that support. And there was a movie released last year called Live the Life You Please. And Simon Manwaring, who narrated that, who also talked about his own story. He's actually on our board now at Palliative Care Australia, but he talked about his own story of losing both his son and his wife, who both died within the space of a couple of years of each other. And Both had life limiting illnesses and how that affected his family and what worked and what didn't. So, those movies and those stories are really important to share about the importance of pediatric palliative care as well and how we need to have a focus on that. Because prior to the National Action Plan, there wasn't a national strategy and a national focus.
Catherine:That surprises me, given the numbers that you actually say, but it's good that it now has been brought to the floor, uh, and just on that, that, that film that you mentioned, it touches a little bit from memory, it touches a little bit on voluntary assisted dying as well, does it?
Camilla:I think it just mentions it, the focus is really palliative care, and voluntary assisted dying and palliative care are two very important programs, so they're not one and the same, but they need to align and, and where possible, work together. So, our position is that, Voluntary Assisted Dying is very much an individual's choice about whether they choose to, to go down the Voluntary Assisted Dying path or not. Palliative Care is a medical specialty. It is not Voluntary Assisted Dying. It's actually assisting a person to have comfort and quality care until the end of their natural life. Voluntary Assisted Dying is about people choosing to finish their life at a certain point. So therefore, the Voluntary Assisted Dying practitioners are involved in a different set. of medical procedures to make that happen. So every state and territory, it's not a national set of laws, it's a state and territory level responsibility and they all have different laws and rules around when people can engage in discussion about voluntary assisted dying, who they engage with. But what we also say is that people should have the choice of palliative care and they should be able to receive palliative care right up until they push that button, just to use an analogy, push the button for end of life. So it's not one or the other necessarily, it can be that they actually work. together, that the palliative care team can deliver that, you know, palliative care, end of life care, right up until that point, that their voluntary assisted dying practitioner goes forward with the implementation of that voluntary assisted dying plan. There are some palliative care practitioners who've also trained to become voluntary assisted dying practitioners, and that may increase over time, but we're very clear it's two very different medical processes.
Catherine:Thank you for clarifying that one for me, Camilla. Another question that I have is around, you mentioned the MyGov, uh, or My Aged Care, I believe. So, can you tell me, how does that, is that process as part of the assessments of what you need for home help? Like, talk me through that a little bit, and is that something that we should be looking at? Because I'm just sort of thinking, is that I had my mother who's 85 this year, uh, I had her sort of connect with her local council, uh, and get an assessment done. Is that what that process is?
Camilla:Uh, so different, different areas administer it in a different way. But My Aged Care is a Commonwealth. It's a national program, and so my Aged Care is that once you're over 65, if you have need for in-Home support, then you will get an assessment done. Now, your assessment will be done through My Aged Care assistor, uh, referrals. You can either self-refer, or it can be referred through a team geriatric. assessment unit. So there's a range of ways to get entry into My Aged Care, but essentially an assessment is done which looks at what your functionality is. And as your functionality changes, you might start with just very little need. You might just have housework, you know, once a fortnight or whatever it might be. But then as your illnesses may not be life limiting illness necessary, but as your illnesses progress, then you get reassessed to different levels. And in, Um, MyAgeCare, if you're palliative, you are upped to one of the highest levels. So you're level three, level four, you know, for MyAgeCare. And I think the in home care program, when that's reviewed this year, they'll be looking at a category for palliative care included in that. That's our understanding that that's the direction they're exploring at the moment.
Catherine:So, if, and just help me with my understanding here, so it is, is it advisable that, uh, if you are over the age of 65 that you, and you need support in the home, that you start that assessment process before you really need it, or,
Camilla:to get you sort of on that, on that path? That's a good question about really need. I think that it's. As you feel that you're unable to function doing certain activities, whether it's hanging out washing because you've got certain conditions in your shoulders or your back, whether it's, and that you don't have someone there to assist you. So I think that's the important thing, who's in the household, who's there to help you and care for you. So if you, If you can't hang out washing yourself, but your partner can, then you get your partner to do that. You wouldn't necessarily get home help to come in and do that. So it's about what are the gaps. in your household about what you need for support to remain in your own home. Because the, the purpose of My Aged Care is to enable people to remain in their own home, um, and have quality of life. So it's really fulfilling where that gap is. So as you're finding that your functional ability is changing, then that's when you need to start thinking about what sort of support you need. Interestingly, you know, anecdotally what we hear is that most older people don't tap into it to look. It really becomes a major issue for them, you know, and so people are not abusing or overusing the system. That's what we hear, that people are really just tapping in as they, they've probably already needed it for a while, but they've got to that point. Because if you think about it, you're allowing people into your home. That you don't really know, that you will eventually hopefully develop a relationship with, you know, they'll become, you'll have a regular cleaner or a regular personal care worker or whatever it is, rather than a rotating staff all the time. It's a big thing to allow other people into your home to do things that you know are to help you with a level of independence. But most people want to maintain their own independence as much as possible.
Catherine:It is a big step, isn't it? Because it is actually admitting that you need someone to, to actually help. And like you said, it's a very private personal space that perhaps someone else has never been into, except for perhaps, you know, your, your loved one who may have already passed and you're by yourself. So it is a quite a vulnerable thing to go through. So thanks for, thanks for clarifying that point, Camilla. I really appreciate it. Is there anything else that you feel that you'd like to share or perhaps provide advice on anyone who is either in palliative care or caring for someone with a life limiting illness regardless of what age?
Camilla:We haven't really touched a lot on the carers except to say about the level of responsibility and the level of care that might be needed. I think when you have someone, if you're a carer and you have someone in your family who's been diagnosed, to have really frank discussions with the specialist or the GP about, The level of care that's required, and think about whether you and your family or your friends can actually provide the level that's required, is something to really be thought through. Because you'll often hear people say, Oh, I want to die at home and I want all my care to be provided at home. And yes, my family will do that, but they haven't actually talked that through. And it's aspirational, I think, for people to want to die at home at the moment, because we hear that there's often not enough. in home care, unless you've got a, uh, a group of people helping you and from within your family or your friends, there isn't often, or they take time out from work, there often isn't enough support for people to die at home. And although they might say, my advanced care plan is I want to die at home, they haven't necessarily done all that planning and that discussion with people around them to make sure that's a practical reality. So in fact, we do have a lot of people who end up dying in hospitals. And the last thing you really want to do is die in an ambulance, either. And you know, all that ambulance ramping that we've often heard about is not necessarily, wasn't necessarily people with COVID, it was people who were older people that were becoming symptomatic and being transferred to hospital, calling ambulances and either being transferred by aged care facilities or being transferred from one of their carers. not cope with the symptoms that were happening. So really, our goal is to say, really plan ahead and think about what's going to work for you and your situation.
Catherine:And Camilla, would it be right in saying also, not just about how the illness will possibly provide them with symptoms and deteriorate perhaps their, their actions, but also should they be having very frank discussions about the impact of the medication. That people are on and how sometimes that can change behavior as well and short term memory loss and things like that. So would that be fair to say that they should have those discussions as well?
Camilla:Absolutely. So one of the things that can happen, and it's an absolute furphy that people who are palliative will become addicted to their pain meds. Okay. That's an absolute furphy. So I can bust that myth straight away. You know, the body will take in what it needs and expels what it doesn't need in particularly when you're palliative. So, you know. There's enormous amount of training that goes into doctors and nurses about titrations and levels of medications at different points. So the public can be rest assured that all the medications that they'll be trying out and using, because different, different strikes for different folks, is very carefully Uh, implemented, but they do need to be aware that with some illnesses, they may actually impact on brain functioning. Uh, they may get impact on other functioning of other limbs and parts of the body. Some medications may cause, uh, digestive system issues. And so, you know, there are the side effects as well. For some people, some people have no side effects, but some people have fight side effects. like constipation or the opposite. But to talk all that through and understand. But remembering it's not a linear journey necessarily. People can come, you know, many, many years ago in palliative care, people were diagnosed and if they couldn't be cured, then they went on this downhill slide. Now we know that people go up and down and up and down. and down and they might have periods of months where they feel really fantastic and they might have a period of time then where they don't feel great. So it's not like you go automatically from stable to unstable to deteriorating to terminal, which is sort of the four phases we talk about. They might go up and down through all those phases and it's really only that terminal phase that's likely to be set, which is that last sort of week of life. I guess the other thing is that when people are in that last week of life, hearing from clinicians about what's going to happen is really important because people's breathing changes. They may not want to eat in the last few weeks of life, but hydration might be important, but not eating food will be important, you know, won't be a problem. Their ability to concentrate. It's not necessarily the medication. So as your body deteriorates, your brain function also deteriorates. But yet we know through research that hearing is often one of the last faculties to go. So if someone appears unconscious, or they're semi conscious, you can still sit and talk to them. Because they can still hear you. So, you know, all those sorts of things are really important. So for people to ask those questions of their medical professionals and, and hear how, in fact, it might be, so they don't go into this unknown panic right at the end, when they see certain things happening, that it can be a really peaceful, comfortable. End of life. And that's really the part, one of the major aims of palliative care is not just quality of life that you live until you die, but that that dying phase is actually a really comfortable phase.
Catherine:Now, Camilla, I know you have a huge amount of resources on your website. Is there anything that we haven't mentioned that is of top of mind for you in the discussions that we've been having?
Camilla:Yeah, look, I think there's an enormous amount of resources on our website and on our members web which are all peak bodies in palliative care and look at those and read those. But I, I think it's always good to have conversations with people as well who've got expertise and experience and talk through your particular situation. Resources and tools are being updated all the time, uh, so that, you know, you can be rest assured that most things that you will find will be up to date. So yeah, look, definitely have a look, search for things if you can't find them, call.
Catherine:Fantastic. Um, is there anything else you'd like to add at all, Camilla? Uh,
Camilla:I think we've touched on most things and thank you for the opportunity, Catherine. It's, it's good to be able to talk about, you know, those, those questions that people often don't want to discuss and, and do it in a way that's going to be helpful, I hope.
Catherine:Thank you so much for your time, Camilla.
Camilla:That's a pleasure. Thanks, Catherine.
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