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
Death, Diversity, and Inclusion in Care with Tonina Gucciardo-Masci and Nikolaus Rittinghausen
We'd love to hear from you. Send us a text :-)
How do we ensure that every individual, regardless of their cultural or spiritual background, receives dignified and inclusive care at the end of their life? Today, we tackle this vital question with two incredible guests who are championing change in aged and palliative care.
In this episode, I sit down with Tonina Gucciardo-Masci, Community Engagement Manager at Palliative Care Victoria, and Nikolaus Rittinghausen, Manager at the Centre for Cultural Diversity in Ageing. Both are working tirelessly to ensure that aged and palliative care services in Australia are culturally inclusive and respectful of each person’s individual needs.
Tonina shares her experience collaborating with multicultural and multifaith communities to promote equitable access to palliative care, dispelling myths and advocating for care over cure. Meanwhile, Nikki dives into the innovative strategies his organisation employs to make aged care more inclusive, from diversity mentoring to practical tools like communication cards available in over 70 languages.
Together, we explore the challenges of adapting systems designed for a "one-size-fits-all" approach, the importance of culturally appropriate food and spiritual practices, and the role of open conversations in breaking down taboos around death. This episode is a call to action to put inclusion at the heart of care.
What We Discuss:
•What palliative care is and why it’s about quality of life, not just end-of-life.
•The importance of culturally inclusive care in aged and palliative care.
•How communication cards in 70+ languages are bridging language barriers in care.
•Challenges of integrating cultural and spiritual needs into care plans.
•Practical examples of inclusive practices in aged care, such as tailored menus and spiritual accommodations.
•How advanced care planning can ease the journey for families and individuals.
•Why conversations about death and dying need to happen earlier and more often.
Links and Resources Mentioned:
•Palliative Care Victoria
•Centre for Cultural Diversity in Ageing
•Download communication cards in multiple languages: Communication Cards
•Learn more about inclusive service standards and mentoring programs: Inclusive Service Standards
•Advanced care planning resources: Advance Care Planning Australia
Rememb
Are your affairs in order? Critical Info helps you organise essential documents in just 10 minutes a day. Sign up now for early access! → criticalinfo.com.au/critical-info-platform
Lost a loved one? Our guide walks you through the next steps, from the first hours to the months ahead. Download it here → criticalinfo.com.au/product/my-
Contact Catherine
Business Website: https://dontbecaughtdead.com.au
Facebook: https://www.facebook.com/profile.php?id=100094865491683
Instagram: https://www.instagram.com/critical_info_org/
LinkedIn Business Page: : https://www.linkedin.com/company/critical-info
LinkedIn Profile: https://www.linkedin.com/in/catherine-ashton-73254528/
Podcast Editor: https://www.livvimusic.com/
Music composer: Ania Reynolds - https://www.aniareynolds.com/
When we're dealing with people's different needs and individual preferences, we need systems that are a lot more flexible and deliberately set up to be able to be responsive because it's not a one size fits all. And you have to actually reflect on how are we systematically being inclusive. It doesn't happen by default. It has to be. It happened by design. That's why we put so much effort into developing resources like training and inclusive service standards to help organizations really embed those systematic approaches. I've had that personal experience myself when I had my mother in aged care and I asked, can we get an interpreter for her? And they looked at me blankly saying, where do you get one of those? How do we initiate any of that happening within the organisations? We've never had an interpreter in this organisation. We're like, Oh my God.
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 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. So today we have Tonina Gucciardo Maski, who is the Community Engagement Manager at Palliative Care Victoria. As a Community Engagement Manager at Palliative Care Victoria, Tonina is responsible for leading Palliative Care Victoria's diversity, inclusive and responsive initiatives. Her work involves collaborating with community leaders and organizations representing marginalized and vulnerable populations to promote palliative care services and improve access to end of life care. Tonina joined the team in 2023 and she brings with her over 30 years of experience working with multicultural, multi faith communities as a researcher, trainer and advocate. Thanks for being with us, Tonina. Thank you, Catherine. And then we have Nicholas Rittinghausen. Nicky is the Manager of the Centre for Cultural Diversity and Ageing. He has significant experience in project management, multicultural affairs, aged care, policy, advocacy, social cohesion and community engagement. He represents partners in Cultural Appropriate Care Alliance at the Department of Health and Aged Care's Diversity Consultative Committee. Thanks for being with us Nicky.
Nikolaus:Thank you very much Catherine for the invitation.
Catherine:Now Tonina I might start with you. Do you mind telling us a little bit about what your role entails?
Tonina:Sure. Thanks, Catherine. Again, thank you for, for inviting us. It's really exciting to be here with you. Uh, well, at Palliative Care Victoria, basically we, as you can imagine, as the peak body, we are about advocacy for palliative care services across the state. But a big part of my role is to engage with communities that also, all levels of community to really get the message out there about palliative care services, what palliative care is. And a big part of that, I must say, is also demystifying what it isn't. So, uh, I work very closely with different community organizations, networks to really just engage as well as we can, uh, with community at a whole lot of different levels. So, yeah, it's a great role and it really. brings together a lot of my experience working with multicultural, multi faith community over the years. PCB's had a really long history working with those communities over the years and I'm just enhancing that work and that legacy moving forward, so great.
Catherine:Lovely. And for those of us who aren't familiar with what palliative care is, if you could just explain in maybe a sentence or two what, what palliative care involves. Okay.
Tonina:So, well, palliative care is. is actually quite a lot of things. It's not, it's not um, it's not very narrow, it's actually quite wide. And it really is about giving people the best, I guess, the best death that we can have. A good quality death. It's about understanding that even at end of life, there's, It's important to have quality of life right to the end. And so in that respect, palliative care is about offering a whole suite of, um, services which are really holistic that looks at that person's needs at the centre of everything, um, in terms of their, their physical needs, their psychological needs, their, uh, spiritual needs and their cultural, et cetera. So it's really about trying to tap into what it is that, that each and every one of us needs at that time of our lives. But it's also about supporting the family and the people around that person. And it's, it's also understanding that it's not just about end of life. It's also about way before we get to that pointy end of things. It's about supporting people once they are diagnosed with a life limiting illness. And what we say is that you can tap in and out of palliative care, It's not about cure anymore, it's about care, but you can still be on a curative journey as long as, and still be receiving palliative care because there's that, that added factor, which is about caring for the person in that sort of entirety and quality of life. So yeah, it's, it's simple, but it's complex at the same time.
Catherine:Well, we'll, we'll try and unpack it a little bit as we, we move through, but I do like, and I hadn't heard it before, how you talk about curative and care. That's, that's a, an interesting way in which to put it, and it's a lovely way in which to think about it, is that, that palliative care is the care aspect. Um, and it runs alongside the curative approach, whatever that outcome may be. Um, which is, is really great to hear. So thank you for. for that sort of explanation. Now, Nicky, can you tell us about your role and, and what, what happens at the, uh, the Center for Cultural Diversity in Aging?
Nikolaus:Thank you very much, Catherine. It's really a pleasure to be here. So I'm the manager at the Center for Cultural Diversity in Aging or what's also known as Partners in Culturally Appropriate Care Victorian Program. So, we run the PCAC program in Victoria and we support aged care providers to be more inclusive, especially when supporting and working with seniors from multi culture, but also, as Sunita said before, we also talk about multi phase. So, we support aged care providers across Victoria in helping them to be more culturally inclusive. We have that in a number of ways. We have our diversity mentoring program, which we actually run across Victoria, but also with our partner organizations in New South Wales, ACT, and Western Australia, where we support organizations on a one on one basis that go through a program of four or five sessions. They do an assessment against our inclusive services at the beginning and then at the end. Thank you. And we support them to make organizational change, uh, in their aged care organization to help them support them to be more, to deliver more inclusive services. We also do our webinars. We have monthly webinars on different topics on culturally appropriate aged care. And we do a little bit of advocacy and projects here and there, but the main thing is to support aged care providers to help them to be more culturally inclusive.
Catherine:Fantastic. Thank you for, for that explanation. I think it'll just help frame the context in, in which we, we move forward with our conversations. So, how did you both meet? I think that, that Tonina, earlier on we were just mentioning that there's been a lot of crossover in, in your, your professional lives. Do you want to tell us a little bit about? Whoever would like to go first with the explanation on how you know each other. I'll give you
Tonina:that
Catherine:role, Nicky.
Nikolaus:Okay, thanks very much. So actually, we know each other for a long time. I think it's since 2013, what I can remember. And I met you first time at the, where I'm working now, at the Center for Cultural Diversity and Aging's conference. I think it was, maybe it was a year later, but So we, we know each other and we swapped roles as well. So I'm now at the center and I was at ECC when I met Tonina and then we swapped roles. And yeah, it's a long time. And Tonina has worked for many, many years. I don't know how many years you can tell us at the Center for Cultural Diversity and Aging. We have been for three years now.
Tonina:I was there for 12.
Nikolaus:12. Okay, there you go. So much more experience there. And I've been at ECC for more than seven years. So, so anyway, and we are in a similar, have been in a similar sector and collaborating and working with each other and we always knew what we were doing and in similar sort of field, but different organization, I would say. Yeah.
Tonina:Yeah. So we're good friends too, which is good.
Catherine:That's great. Because I, I think when I first met Nikki and I suggested the podcast, she's like, well, I think we should get Tonina on. Uh, so, so, uh, it's good to have you both on together and be able to walk us through this process. So, when we think of palliative and aged care services, how does cultural diversity play a role in those services?
Tonina:Um, well, I'm happy to have a go at that one. I guess it's, when you think about palliative care and aged care, it really is about understanding that. We, we need to take a holistic approach when we're dealing with, with any, any person, any family. So, really focusing in on what those people's individual needs are. And that marries really, really closely with with the expectations of palliative care, which is, as I said before, it's a really holistic approach and, and aged care as well. So it's actually really pivotal. It's the, the culturally inclusive approach and those, let's say the palliative approach and the approach to aged care. It's, there's an enormous synergy between them because you can't, you can't actually do palliative care and aged care properly if you don't have a culturally inclusive approach. That's, that's the bottom line. Nicky?
Nikolaus:I just want to add to that, if that's okay, that in Australia we have 36. 4 percent that were born overseas and the majority of them were born in mainly non English speaking or culturally and linguistically diverse countries. Communities or countries. So it's a quite a significant part of the population. So we're not a minority anymore.
Catherine:Yeah.
Nikolaus:Culturally diverse seniors and exactly what Tanina was saying. I think it's for any organization. It's important to have a culturally inclusive approach when working with seniors or or communities, diverse communities, because it's a very big proportion of our community. And we sometimes need to have specific strategies for that. But at the same time, as Sunil was saying, we need to have a holistic approach because everyone has a very, has very unique needs and, and preferences.
Catherine:And it's not like when you, um, It totally makes sense to me because who you are is who you are and you're made up from your, your place where you were born, your heritage, your spiritual beliefs. So it, it totally makes sense to me that it has to be incorporated as part of the process. So tell me what are some of the challenges that you encounter when trying to actually embed these, these practices into an organization?
Nikolaus:I just say one thing quickly, because sometimes when we talk about language, for example, I think it's not, not everyone would agree that language diversity or the right to express oneself in one's preferred language is actually human right, according to the UN Declaration of Human Rights from 1948, because it's, it's, it's not, we're not, I think we can improve a little bit in Australia becoming more multicultural, multilingual nation. We are multilingual, we are multicultural, but we're not. Embracing that as much as we could, if you compare it, for example, to other countries, I'm thinking about Europe, for example, other continents where multilingualism is more common. So I think being able to whatever it is to express one's culture, one's face, uh, one's, Everyone's language is really important. And I think sometimes we try and simplify things, which is important in a way for a provider to understand what are the real key things, aspects we need to focus on. But when we simplify too much, we have a, uh, a society where we are not responsive or inclusive of people's individual diversity and diversity characteristics.
Tonina:I'd also say that, unfortunately, these sorts of approaches, they don't happen by default because, unfortunately, our systems are set up as a bit of a one size fits all approach and, of course, when, when we're dealing with people's differences and different needs and individual preferences, we actually need systems that are a lot more flexible and And deliberately set up to be able to be responsive because it's not a one size fits all. We need to be able to, to look at the systems that we are developing and embedding in our service provision across the board, whether it's palliative care services, any health service, aged care service, and you have to actually reflect on how are our, how are we systematically being inclusive? It doesn't happen. by default. It has to happen by design. That's why we put so much effort into developing resources like training and resources like the inclusive service standards that, that we developed at the centre to help organisations really embed those systematic approaches. Because even, even if you just say, Oh, well, you should use interpreters when you, when you're using a You can't communicate with someone or someone can't communicate with you. It's all well and good to say, use interpreters, but if it's not part of the infrastructure of your organisation, it actually becomes impossible because as we know, those sorts of things never happen in, in an aged care service unless it's part of a policy framework, unless it's part of a procedural framework. And being, even just being able to do something as simple as organising an interpreter requires. those infrastructures within an organization. I've had that personal experience myself when I had my mother in, in aged care. And I asked, well, can we, can we maybe get an interpreter for her? And they looked at me blankly saying, well, we've interpreter. Where do you get one of those? Um, how do we, how do we initiate any of that happening within the organisations? We've never had an interpreter in this organisation. I'm like, Oh my God. So it's a lot to be said for that.
Catherine:Yeah. And, and look, I know from my own personal experience, when we were running programs at the Royal Botanic Gardens, we, we had to make sure that the budget was very specific when we wanted to provide relaxed performances. That's generally for people who are sensitive to loud noises or strobing lights. So we would, would make sure that we had a budget where we allowed to have a relaxed performance and a relaxed space. So it's making that conscious decision, isn't it, to, to make sure that you allocate the resources and the funding to allow for that access.
Tonina:Yeah. Yeah. And. I might say one of the things I've, I've often said is that what we tend to be seeing is that we're trying to retrofit that stuff into organizations, so it always seems as an add on instead of thinking about, well, what is our service offering and how do we make that inclusive from the get go and what, what resources and funding do we need to make that happen as opposed to we've set up all our systems and now, Oh, We have to retrofit everything into, to accommodate the needs of those people with neurodiverse people who need a quiet space or where we, where people who need a prayer room because they, we should allow for people to, to pray at work if they need to or whatever the issue is.
Catherine:Yeah, yeah. And tell me, so obviously that's a clear challenge that you're dealing with is the fact that you are trying to retrofit into organizations that have limited resources and infrastructure. So what are the some of the things, you had just mentioned to Nina earlier, that when you're working at the the Center for Cultural Diversity and Aging, that there was some guidelines, did you say? Or Yeah, I'll let Nicky talk about that, yeah.
Nikolaus:Thanks. Yeah, so, so we have at the Center for Cultural Diversity and Aging, we have the, the, the practice at Inclusive Service that were developed by Tunina Gucciadou Maski and Ljubica Petrov and Dale Park. And basic, and then we have Lisa Chibuza updated them later. They have the same, the same inclusive service standards. But basically, they are a guide to help an organization. Tonina was talking before across the systemic level of the organization, how to be more inclusive. And that goes across 16 performance measures that the organization can soon audit and planning tool assess themselves as well and look into how inclusive they are. And that's what we're doing with our diversity mentoring program clients. They go through an assessment at the beginning of the program, then the end to see how they have tracked. And it's just something I wanted to add as well to the conversation we were having. I think because sort of Tony and I, we sort of Tech teaming a little bit. I think it's also important to add that each organization is a different part. on their inclusion journey. And it's a journey because I don't think there's an, uh, necessarily start and ending point. It's just that organizing at different levels of inclusion, some organizer doing great work, that's part of their operations being inclusive. They do that across the organizations. And then there's other ones that are learning. There's some starting. There's maybe not even interpreter available. So I think it's also important to say that not every organization has the same capacity needs or, or, or knowledge. So that's why it's a journey. So anyone who wants to join the journey, organizing such as the PICA here in Victoria or program or the center, we try to help them in when it comes to supporting them to be more culturally inclusive and, and the people. The inclusive services is one of our key resources. We are, they're based on the current quality standards, but we want to update a new resource we haven't launched yet. So we'll not talk too much about, but it's basically a relaunch or different sort of resource based on the new strengths and. Aged care quality standards, because they're going to change as well, or have been changing.
Catherine:I was hoping I was going to get a scoop there, Nicky, but uh, obviously you're keeping your cards close to your chest on that one at the moment, so, but I suppose for me, what I liken it to when you're both talking is the fact that reconciliation action plans are something various stages with, uh, implementing or whether they've started or, and it seems very similar that organisations at the same space, maybe at the same sort of going through the same processes with that, that cultural inclusion as well. And, And what, because as you said, it's not really a, uh, a minority any longer. Is it, we're dealing with a significant proportion of the, the, um, population. And also we're dealing with an aging population. So the numbers will only increase over time. So when you think of, of best practices or what's available now that people can seek from your organizations, what. You mentioned the, the, the guidelines. What other things, Nicky, can people come to you, you've got your mentoring program, what other things if they're thinking about improving their, their inclusive practices?
Nikolaus:Yeah, I haven't actually mentioned our most popular resource, our communication cards. Donina is smiling because she was one of them to get up a little bit, so we developed them. We have them in now more than 70 languages available, so we're increasing them and always getting new languages. One of the recent additions was Tongan, and they're used across the world, actually, and we have very high hits, so I think. In the last, in the, in the period between January and June, we had around, I think just under 30, 000 hits for these ones across Australia and internationally. I don't know how that happens, but they're very popular. And then we have, we have different training options. We also want to do more training in regional areas. We have our webinars, we have our diversity mentoring program. We also have, which I'll talk a little bit later about, but we also have our cultural care plan, which is a resource to support an organization to look at what are some of the needs a senior or aged care client has. It comes to spirituality or food or care, care plan that need to be considered in terms of their language, culture, diversity, face diversity, that sort of thing. Uh, and also we have our practice guides, around 20 practice guides around different topics in culture appropriate care, which give us sort of a snapshot, two, three, four pages on a specific topic. So help some aged care provider to start looking at what are the basics they need to look at when it comes to, for example, culture appropriate food. culture appropriate dementia care, end of life care, some of the topics we are covering and give, give that initial understanding of what sort of, where organization can start from and improve in that space.
Catherine:And it seems like you've developed them in byte size, some of the resources to be in byte size. So it doesn't seem to be overwhelming. It seems that people can, can implement just the communication guides alone is a, is a step in the right direction. And can you perhaps explain to people what, what those communication guides entail?
Nikolaus:So the communication cards are basically a common, so helping a aged care staff and a client from diverse backgrounds to have a conversation or not conversation, but have a bit of an interaction on what are key issues when it comes to their care needs. For example, there, if you look at. There's a card, for example, where you can hold up, where you have a picture of food, for example, and you have the option for some kosher food, halal food, vegetarian food. So, or if you want the priest, there's a picture of the priest of the orthodox priest, for example, and then it's in that target language and in English as well. And some of them also have the pronunciation there as well. So people. Helps them a little bit how to actually pronounce that in, in the target language. So it's basically helping basic care needs through language interaction. It doesn't, it's not a, it's, it's not like replacing an interpreter or anything like that. But if you have something that you need on the day, on the spot, And it covers the main sort of personal care needs of an, of a person, uh, in, in more than 70 languages. And we also develop them into phrases. We have them into phrases as well, because people said we want to have them as, as phrases, because we want to have more, be able to say more things than just food or. Uh, showering or brushing teeth, whatever it is, so there's a bit more, more options as well. So, yeah, they're all available at our culturediversity. com. au website.
Catherine:That's fantastic because it is those, as you were saying earlier, Tonina, in your own personal experience, the challenges of, of finding an interpreter, when a lot of the conversations are those, those, those, those. Everyday conversations about personal care and and food and and so it's great that there is a resource I'm not surprised at all that they're blowing the numbers with with their downloads to be perfectly honest It's such a practical tool to to use and and I see them being just a great tool for everyday use, not even just in an aged care facility, but also we have other services that actually allied services, which actually work alongside the aged care community. And, and they're just such a great resource for people to be able to use. I think it's, it's beautiful.
Tonina:I've heard of people actually downloading them and putting them on little cards and Hanging them on people's walkers, like the significant ones. Because I think there's over, there's quite a few in the, in the group. So it's about, I can't remember how many they are, but there's a lot. So you can choose which ones you want to download. And yeah, and I've heard that, people actually have them close by, near people, so that they can use them all the time. So it's pretty extraordinary that we've been able to develop them so much from being a fairly simple idea many years ago, and now they've, you develop them even further. It's fantastic.
Catherine:Yeah, I think that's, that's absolutely brilliant. And what role does language play in palliative care and effective palliative care across all cultures? Well,
Tonina:look, I think we can't underestimate just how pivotal You know, languages, quite honestly, I mean, it is the main tool we use to communicate with one another. So, sure, a lot of communication is non verbal, but so much of it is verbal as well. And honestly, if we are not giving people the opportunity to express themselves in the language that they feel most at home with, most comfortable with, most au fait with, and quite frankly, comes naturally to them, then we're losing the battle, aren't we, in terms of actually engaging in serious communication with that person, actually giving that person the respect they need, the voice that they need to, to be given. to communicate effectively with you. So it's, it can't be underestimated how important it is that we allow for that opportunity. And we use all the resources we have at hand, whether it's working with an interpreter or getting access to resources, like we've just talked about, the communication cards or the many, many vast, resources that exist, um, that are in language. Know where to download the information in language for, for a family, for a person. It just, anything that can aid that knowledge and that, and that, that interaction is really important.
Catherine:And Tonina, I might just go back to you again because I'd, I'd ask the question of Nikki. In relation to what sort of tools do, do Palliative Care Victoria have that they can offer people to support them wanting to do best practice for cultural diversity and inclusion in their, in their workplaces?
Tonina:Well, look, the sector's really quite, quite well resourced in terms of the standards around this. The expectation is, in fact, one of the key elements of the palliative care standards for specialists and non specialists in that, in that sector. You know, who provide palliative care is caring for people's diverse needs. So, it's quite, it's a central pillar to the work that we do. And again, it's because it is such a holistic idea to, to, to develop, to deliver palliative care. So, that is very helpful. And I think the same can be said for aged care, where it's, it's embodied in the standards that this is. And we've got to learn how to do that really well. In terms of our work, you know, we, we support the sector with multilingual information. We have, um, a lot of resources on our website that can be downloaded directly, uh, in language. We actually have the pages on our website are in language as well. So people can click into, um, a page and it will. Talk to you in your language, um, so it's not just about downloading, um, a flyer, but also, yeah, we just do a lot of that engaging with the sector, with community, but also engaging with the sector about how to go about. you know, engaging with multicultural, multi faith communities. So we try and walk the talk. So if anybody, um, is interested in learning more about how we do that, you know, it's, it's about, um, it's about best practice and helping people navigate, like, Like Nicholas said, everyone is on a different journey. So we're really lucky here that we, we are, we have recognized how important it is to resource this area of work. It doesn't happen, as I said, by default, it has to happen by design and it has to be resourced well. And so I feel really very well supported in that. But, Other organizations may not have that same support. So, yeah, it's about sharing what we know. We often will report on the work that we're doing to, to help the sector build up their, their knowledge and their capacity in this space. And there's also so many resources out there. So, so many. It's not for lack of having access to resources that we, we struggle with this area of work, quite honestly.
Catherine:And we will actually have links to both of your websites, so people can actually find the resources that you're referring to as well. But something that, that I wonder, um, how do we do this well, and, and obviously Maggie Beer has been very instrumental in this in the last, uh, few months with her, uh, going into an aged care facility and talking about food and, and the thing that I think about when I think about my cultural heritage, which is, uh, very, uh, European in the, in the English version and then Austrian, German, somewhere there. I, I think about, for me, it's, I grew up with Yorkshire pudding and roast. Uh, and when I think about my nephew and his wife, she's Mauritian, so they cook the best lamb biryani ever. So how do you incorporate something as central as food? It's a curveball, sorry, I'm
Tonina:just sort of thinking,
Catherine:like how do we do that?
Nikolaus:Okay, I think one thing that's important to acknowledge, you said it in your question in a way that there's so many different food options. And for example, when we talk about the new Aged Care Quality Standards, there is one that specifically focuses on food. And actually the quality and safety commission actually said very clearly to us in one of our recent meetings, if someone has a requirement for specific food requirements, whether it's halal, whether it's kosher or Jane vegetarian, whatever it's, it's actual requirement. The organization has to provide that, full stop. That's great. Now, whether an organization does it or not, that's a whole other question, how actually that works with, you know, catering arrangements or cooking on site. But I want to give an example of one organization that does it really well, so I give a bit of a, uh, a thumbs up. There is Kalina Care, when we visited them, they have very tailored, they do a very tailored way of putting food in the very. Multicultural way on the, on their, on their menus. So they consult with the residents and they offer them two or three different dishes to have a cook on site. And they have cooked dishes that it's either, they have a founder as a Ukrainian aged care facility, but they're more and more multicultural. So they have usually something that's Ukrainian specific. And then there's two other, other dishes, multiculturalists. So they give people different options. And obviously food is very important for everyone, whether it's aged care or any, any individual. So I think that's something that. Some organizations obviously do that, try to get consumer feedback through residents, advisory committees, whatever it is, to make sure they hit the mark. But obviously it's not that easy because the textures, then the nutrients, all that stuff, there's also a bit of compliance involved. So it's something that I think some organizations, they need to improve a little bit. Or significantly, and there are some organizations who probably have it more in their DNA because they are, I guess, more specialized, or more, have put more resources into, into doing that.
Catherine:Something that was really good that, and it reminded me when you said the word texture is the fact that, that's, that's, It's so complex when that particular series was talking about food and wanting to change practices. Was there so many considerations when you're dealing with feeding a large group of people who are all unique with their needs? And I think that that's the, There seems to be the challenge with, I suppose, any sector, but I suppose as people age, they perhaps become more vulnerable or perhaps lose the ability to communicate as effectively as perhaps they once would have been. So yeah, it seems to be a very challenging space you're both working in.
Nikolaus:I just want to add to that, that for example, I met once a senior from an Indian background and she said that her husband went to one of the facilities and he really wanted to Rice and curry, but they could not deliver that in that facility for various reasons. So she brought the food in all the time. There's also issues within people bringing food, that sort of thing. But that was the only way that her husband would eat the food, because she would bring it every day.
Tonina:Yeah. Yeah. It's funny. I was on the board of a, an Italian facility for some years and the, the food was amazing. We had Italian chefs and all the rest of it. Very good quality food, but the biggest complaint always was about food. So, even though we, it was always a sticking point, there's always someone there who didn't think the lasagna was right or the, the whatever, it was just not quite like home. So, it's just always going to be a challenge, even in a, in a, in an ethno specific facility.
Catherine:Even when you're not, like when, when I was at the gardens, 13 years, feedback. It would always be about the food or the coffee. I
Tonina:think it's because it's something so tangible, isn't it? And it's a lot of stuff about cultural, culture and cultural inclusion is really intangible. Like it's just, but something like food, language, those are the hard things we can, we can focus in on. And if we can get some of those things right, I think it helps with the other stuff. There's, it's a bit like a domino effect.
Catherine:And how do we get things right when it comes to spiritual needs?
Tonina:Well, that's interesting because obviously the area that I'm working in, in palliative care, there's a lot of talk about spirituality as well. And I guess, It makes sense because when you are in this space, you are talking about things that are existential. It come, things come to a point, especially, uh, when you're questioning faith, life, all those things. They tend to converge at times like end of life. Funny that, but yeah, we, I think the, the most important thing there is again, to come back to having the, the right conversations at the right time with people, allowing for people to express what their needs are in terms of their spirituality and supporting that journey, however it needs to go. And so the religious, making sure we make allowance for religious practices, for preferences, for religious obligations at end of life, things like that. And just, Just being open to the fact that people have. Needs at that, at that time of life, they don't always agree in families either. Um, so navigating that, but really being open to those conversations and leading those conversations because sometimes people need the permission from the, the care team to, to say, are we allowed to? Blah, blah. Can we have blah, blah? It really needs to be a part of the, part of the whole.
Catherine:And it seems that with what you were saying, Nikki, about the wife that used to bring in the food for her husband, even when you were talking just then, Tonina, about spiritual needs and, and what that person individually needs. It seems to me that The earlier that we have the conversations with our loved ones about what they need and what's important to them seems to be the key to then tailor any care. Would that be fair to say?
Nikolaus:Yes, it would be fair to say with advanced care planning, the only thing is that a lot of people do it.
Catherine:Yeah. Because they
Nikolaus:think it's about, you know, they're sort of, it's people already wanting to plan, you know, are we thinking about of their deaths and they don't want to think about it. And I think most of us are like that. A lot of people are like that. But I think it also, even, even then, it needs that responsive, inclusive approach to explain that, to have that conversation with the community, to. But yeah, it's an interesting conversation and yeah, I remember there was a project that ECCB did on advanced care planning. There was a project report and everything. And that was some of the issues that were found that each community has a different way of approaching it needs that sort of tailored approach to the community because they would perceive things differently.
Tonina:Mm. Yeah. Yeah. And even within the same religious denomination, there are differences between each family, the way that they express that. So even if we know the, if we know generally that Catholics do this, this and this in terms of rituals and whatnot, but every family will express that. Express that, experience that in a, in a way that's totally unique. So it is about, yeah, just having, asking the right questions, I suppose. That's what we've basically come down to, isn't it, Nicky?
Nikolaus:And I think that's, that's another thing. I think having these conversations, because they're not easy conversations to have. And for example, I don't have an advanced care plan. I, I could have one, everyone, any age can have an advanced care plan. Yeah. It's something that. I think there's lots because if you, yeah, there's a lots involved when you develop. Something like that. A lot of emotions. Yeah. And yeah, it's a, it's a tricky thing, but we know that it would be good because for any, for a family member, your partner, whatever, it's so much easier if you have everything in place.
Catherine:And it seems to be when I, when I talk about having the conversations, it's interesting that you went straight to advanced care plans, Nicky. See, with me, when I think about end of life planning, I, I go back, who's going to take care of the pets? Where's the car keys? I go, I go back to the practical, but. application before that. So, for me, it's those conversations about the practical sort of mundane things before we even get into the, to the care that, is that where we should, should we be starting those conversations there, do you think, before we get into the advanced care planning?
Tonina:I think so, but they're not, not necessarily easy conversations, like we say, and we try and introduce those conversations gently in community. I mean, one of the things is that if we, we try and approach community about palliative care, there's a bit, there might be more resistance to having that conversation. But if we approach them in terms of saying, okay, advanced care planning, what's important to you? How do you, who's going to make decisions for you? All those sorts of more, you know, it's a different way into the conversation. And sometimes. Yeah. You know, even though what you just said, Nicky, is that it's hard to have advanced care planning conversations, it's even harder to have palliative care conversations. So we sometimes use the, the advanced care planning route. What's important to you, thinking about if something was to happen, blah, blah, blah, like you're suggesting, Catherine, um, is an easier conversation. And it's a step, a step into palliative care conversations. So, yeah, it's, but it's very challenging. Most families, like I think my situations with my folks, we never had the conversations. Weird things just happened and I was, I was just lucky that at one point it came to my mind that what my mother needed at the end, but it was not something that we had discussed. It just dawned on me, Oh my goodness, I better call a priest because, and then, and it was exactly what she needed, but I hadn't even, wasn't part of a plan. It was just like, Oh gosh, I think mum would want to play a priest right now. And yes, in fact, it was the best thing we could
Nikolaus:have done for her. Yeah.
Tonina:Yeah. So.
Nikolaus:I think the other thing is and I think that's why we have good you have your podcast Catherine is the The topic of death as a taboo and you're trying to get over that a little bit with your podcast because yeah, it's, it's a taboo topic in our society and for various reasons, we could go like deeper into that philosophical, theological, whatever you want to look at it from various perspectives, not another topic we people like to talk about, even in when we're approaching or thinking, Oh, how is that going to be? And because I also, I'm not an expert in end of life care, that's not our key sort of area. And there's other organizations like Tonina's and. Meaningful Aging Australia about spirituality and that sort of thing as well and spiritual association. It's something that it's, it's a topic that I think it's good that you bring to the forefront and actually have a conversation about it. And it's normal part of life is that when we, when we are born, we know we will one day die. It's impossible not to die. So I think it's, it's a good conversation to have. Even so it's a sensitive one and we have to be careful with exactly what Trinia was saying with her mother and most people and I think it's everyone don't people don't want to talk about it.
Catherine:And this is something that neither of you can probably answer, but you know, I, I do, I do wonder the, the role in spiritual leaders at initiating the conversations and taking the taboo out of the topic, whether that can be some sort of involvement, cultural leaders involved in that. Obviously, you know, if you work very closely with different cultural organizations within the community that have leaders in that space that obviously are acting. with the best intentions to support both of your missions. But yeah, whether there's a larger collective and involvement of spiritual leaders. So, um, how does culturally, what cultural diversity impact on someone's care plan?
Tonina:Hmm, that's quite a specific question, because care plans are very individualized, and sometimes I think the stuff about culture is a bit too esoteric to embody in a care plan, because I think Care plans can be quite clinical as well, as well as trying to embrace all the other stuff that's important for a person. But having said that, certainly in the palliative care space or end of life space, a care plan may need to be adapted to accommodate some of those things I was saying before around what What expectations there are, particularly at the very end of life around religious obligations or, I mean, I mean, quite honestly, there are people, there are religious groups that don't even allow for treatments. at end of life. It's just, they're a no go. So, there's your care plan. There is no care plan. It's let, let, uh, let. One example that I've spoken about before is, uh, with, uh, that happened, that I came across with the Islamic community, where we would, we, we came up through an information session we were running with an Islamic community group that was made up of and the conversation came up about them, having concerns that they've got certain rights and rituals and obligations at the end of life, that they're worried that when it comes to the crunch, they won't be able to do in the palliative care context and end of life context. So we talked about all that. And one of the women's husbands passed away. Not long after that session and was in palliative care and apparently she felt emboldened by the conversation to be able to speak with the care team at the time with the physician and the nurses around what they needed and the fact that they needed the their her husband to be more lucid for a time so that he could be involved in those prayers. So, uh, cause one of the issues was that quite often people are sedated quite heavily towards that end. So they were able to negotiate with the, with the physician to bring him to a certain level of, of lucidity so that he could participate in those rituals. And, and she, She was forever grateful for that opportunity to, to, to, to allow for that to happen and which may not have happened has she not been part of this conversation we've had just several weeks earlier in her little community group. So, so there, there's a care plan that's had to be. Modified to allow for that.
Catherine:That's fantastic. That's a great example, and I heard one a few months ago whereby It was very important from a spiritual perspective that this person when they were dying Felt like they wanted to have their their soul Their belief was that they wanted to have their soul Released and they felt the only way in which they could do that was through being outside Being outside wasn't open that wasn't a possibility and But it was just enough to have the window open. So having those conversations and like you were saying is that if you just have the conversation and there can be a solution and it can be very simple as opening a window or changing the medication and when that's timed. So that's, that's beautiful. Thank you. And So we've talked on from, uh, we've gone quite, quite a few different places, but one, one place that I'd like to, to talk about now is, is the training that you were mentioning earlier, Nicky, the mentoring program. It sounds like that sort of, uh, organizations identify a champion to come and do training with you and then bring it back to the organization. Is that what happens? Yeah.
Nikolaus:So basically organizations, the diversity mentoring program, they apply to be part of the program. Then we assess the applications and then we allocate who is, which are, because we have, we have a number of other organizations who will train which organization depending on what state or territory they're from. And then they go through programs where at the beginning they do an assessment, the cultural assessment through the, Inclusive service standards and they get four to five sessions around leadership and how leadership changed organizational change. And then at the end, we do another assessment and in terms of how they're faring against or assessing against the inclusive service standards. So that's basically a nutshell how that works. It's a fairly new program around two years, so it's still, in a way it's a pilot, not pilot, but we haven't, it's not across the whole country, I should say. And yeah, so that's what they get. They get a session for one hour where things are discussed, where they have opportunity to ask questions, to reflect a little bit as well, what, how they're going. So at the end of the day, we're also thinking at the moment of doing a little, having a bit more lighter touch to it, having more like conversation. So we're trying to take. away than a sort of fear from people that this is going to be very serious or they're having just the statistics or the facts is having just actually just having a conversation where they have that option if they want the presentation that's fine but if they want just having a conversation they can also have that so that's you know what's what will be happening what's happening actually it's organization who want to do it Because if they didn't want to do it, you know, we don't get them because they wouldn't apply. That's always a conversation. How do you get organizations that are not doing it? That's a whole other conversation to have because we're not necessarily reaching the ones that should do it, but because there's no compliance in aged care that you have to do that. So it's really optional or if there's a focus of the community or the organization, if they think that's good for their branding, their marketing to get more clients, whatever it is, that's, that's the reason why not everyone necessarily does it or doesn't want to do it because they say it's not like their focus. It's not what is what, what they're. Not necessarily in line with what they want to do. And, but at the same time, most organizations that would have some sort of diversity in terms of their seniors when it comes to aged care. But yeah, so that's just every organization has a different, I guess, focus. And that's why not everyone does training and there's other organizations training as well, like open does diversity training. There's LGBTIQ plus health. There's similar training, then there's the Rainbow Tick for organizations to apply for to demonstrate that they're delivering inclusive care for gender diverse people. So there's all sorts of different trainings, but yeah, one focuses more on cultural inclusion.
Catherine:And it seems to me from what you've both said, is it's very clear that if we need change to happen, it needs to be written at a state or federal level in the, the guidelines. So then it's. adhered to all the way down. Would that be fair to say?
Tonina:Yeah, and I think it's taken, look, years and years of advocacy over, over several decades really to, to get some of those, those pieces of the puzzle together in terms of the big, the big standards and, and the, the national. frameworks, and it's, they've been slow to come, but they've eventually, they're coming. And, and I think I can speak for the palliative care standards that I think are really, really do a good job of, of that. And I think the new age, well, the old age care standards are pretty good too. Like the second, the most recent, the ones before that were a little, a little less. inclusive, but the, the ones we're moving away from, uh, we're pretty, we're pretty good. And I think these new standards are even better. So there's an evolution. You can see the evolution around it. And this is an ever changing field, an ever changing, evolving conversation. And what we talked about 20 years ago has changed. Some of it hasn't. Unfortunately, we're still talking about food. And some of the basics. But anyway,
Catherine:sorry, that was me. No,
Tonina:no, no. But it's the same. It's what I'm saying is a lot of the basics are still the same, but
Catherine:yeah.
Tonina:But those frameworks I think are, are getting there are much closer to where we are hoping we need to be. Is that what you think too, Nikki?
Nikolaus:Yeah. I just wanna add to ex to additional what you're saying, just to have some complimentary things to say, is that I think Australia came out of Assimilationist policies just in the seventies, early seventies, and then. You know, multiculturalism was embraced, but even today we have people who are questioning for various reasons. They're questioning multiculturalism and us being a multicultural nation. I don't want to go into my too much detail to, but you probably know what, what I'm referring to. So I think there's sometimes there's a little bit of a concept of why do we need to do this? Because there's sometimes we have a less inclusive or even assimilationist mindset, which is a reality that we are living in. But with, in terms of the positives, what Tronino was saying is that the quality standards, especially standard, new standard one, is very much focused around the person's diverse needs. Also, for the first time after following the multicultural framework review, we have a multicultural aged care unit within the Department of Health and Aged Care that had never been there before. It just starting. So I don't know exactly yet what they are doing, but they are something that's something that we are looking to look out for. And then in terms of at a macro level, we had the diversity strategy in 2017. And that's likely, I think, going to be updated with the new standards with the new HK act kicking in. Obviously we were probably more in favor as the PCAG Alliance for more. specific, more targeted approach that's more responsive of, of culturally diversity. I don't know if that will happen, but I just want to say with a positive note, I don't, I'm not aware of the PICA program or something similar existing in any other country around the world. I think it's a very unique program so that the government clearly has an investment, a commitment to culture diversity in aged care, which is something that Probably most governments around the world are not investing that's that amount of resources and support as the Australian Department so I think government of health Department of Health and Aging I think that's something very positive and I'm always conscious of because if I look at other countries, I don't see anything similar coming out So I think we have that in Australia, which we can be very very happy about. I mean, I agree with, with everybody in the sector, there's more we can do, but actually having such a program is something that it gives us somewhere to start. And
Tonina:it's worth adding to that, Nicky, that it's not just the last few years that they've been funding this project. This project is, has been funded for about 30 years. So the one that Nicky is talking about. So it's been a long term commitment that has evolved over those years, but still is, is pretty impressive. When you look at it that way.
Catherine:That's a great way, I think, that both of you have just summed up from an organisational perspective and a policy perspective of where we have been and where we are going. I think that, obviously, that sounds very positive, the things that we see that have changed over periods of time, which is great to know. What do you recommend, and you've given some examples, Tonina, about what can the individual do? When they have someone in an aged care facility that they, a loved one that they care for or if that is the person going into aged care or palliative care setting, what is something that the individual can do or the family of the loved one can do?
Tonina:Look, there's just, there really is no excuse now for not knowing stuff, honestly. There is so much. out there. There are so many resources. There are so many people who've done the hard yards, who've done the research, who've been developing resources for decades. And really, if you, if you need information, it's at your fingertips now, quite honestly, on anything, as we know. The, there's translated materials about Pretty much everything. And there's a site called Health Translations in Victoria that's funded through the Centre for Culture, Ethnicity and Health. And every imaginable translation in the health sector is sitting on this website. So you can literally go there, jump on it and download what you need. And we'll link to that as well. Fantastic. And so I think there are webinars coming out of our ears. There's all sorts of opportunities to engage with peaks, with, with organisations in the sector, like the Centre for Cultural Diversity and Ageing, where even just as a starting point. imagine having a quick phone call with Nikki and, and where the options that are open to you. So I think it's really just about having the right intention and, and really wanting to learn because there's no lack of resources to tap into as far as I can see.
Nikolaus:I just want to add to that, that be the change you want to see in this world or in the aged care sector, wherever you are, because I think everyone. can make a change, whether it's a manager or a care worker or a family member, and we can all make a difference. So I think we need to start with us to actually help to improve the system. And if there's any questions or any worries, or you're maybe afraid of doing it, this organization can help you through like, for example, mentoring programs, diversity consultants, experts, peak bodies, who can make it happen. So don't be afraid because I know for some organ, it can be a little bit overwhelming, they don't know where to start and how to do it. But luckily we have that support in Australia that has specialized organizations that we still need because we're not in an ideal world yet to help with that support. And then on a family or personal level, I think anyone can make a difference. And what, what Tonina was saying before, we need to walk the talk. So how can we do that in our family, our community, in our organization, because it's always easier to say what other people need to do than what we all need to do.
Catherine:Yeah. Yeah. And, and the change can really start with us. And I think that's a beautiful way to, to end our conversation today. Thank you so much for joining us. Thanks for having us. It's been great. Thank you.
Nikolaus:Thank you for the opportunity.
Catherine:We hope you enjoyed today's episode of Don't Be Caught Dead, brought to you by Critical Info. If you liked the episode, learnt something new, or were touched by a story you heard, we'd love for you to let us know. Send us an email, even tell your friends. Subscribe so you don't miss out on new episodes. If you can spare a few moments, Please rate and review us as it helps other people to find the show. Are you dying to know more? Stay up to date with. Don't be caught dead by signing up to our newsletter and follow us on social media Head to Don't Be Caught dead.com for more information and loads of resources.