Harpreet Kalsi-Smith · 54 min
When her mother died, Harpreet Kalsi-Smith didn't retreat from grief, she built an entire organisation to ensure no one, especially those from First Nations, migrant, and refugee communities, has to face the end of life without dignity, culture, and kindness.
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When Harpreet Kalsi-Smith's mother became ill, she stepped into a world she had never expected to navigate. Her mother's final months taught her something that would reshape her entire career: that how we die matters as much as how we live, and that kindness at the end of life can transform even the hardest moments. Shaped by her parents' migration from Kenya and their open-door values, Harpreet had spent 15 years working in community development, social justice, and health promotion with First Nations communities and Stolen Generation survivors. But it was her mother's palliative care that showed her the gap. She saw fragmented systems, clinical interactions that talked at rather than with families, and one physician who simply saw them. That moment of genuine kindness stayed with her.
Harpreet founded The Kindness Company to ensure that people approaching the end of life, especially those from First Nations, migrant, and refugee communities, do not face it alone. Her work rests on listening deeply: sitting with an uncle for 12 months until he was ready to plan, building trust before asking difficult questions, understanding that true person-centered care means some people need more time and more resources than others to reach the same level of access. She works with communities to create spaces for collective grief and healing through yarning circles, ritual, and presence rather than clinical intervention alone. She helps families understand what the dying process actually is, so they can redirect their care toward presence and connection rather than food and prolonged intervention. And she uses the stories residents share with her to advocate directly with government and health services for actual change.
At the heart of Harpreet's work is a simple belief: community can hold you through the end of life, and one small act of kindness a week, offered to someone in your neighbourhood, can transform their life.
⚠️ Content advisory: this episode discusses grief & loss, which some listeners may find distressing.
If you need support, you're not alone. Help is available: • Lifeline (24/7 crisis support): 13 11 14 · lifeline.org.au • GriefLine: 1300 845 745 · griefline.org.au
“communities heal in community.”
“those people deserve every ounce of dignity, power, and control and respect and kindness to at least have their wishes fulfilled at that time.”
“it was over 12 months later that I was at another community event and he came up to me and he said you come home today and you bring all those papers with you.”
The hero, today
Person-centered care means some people need more time, more resources, and more support than others to reach equitable access, not that everyone gets the same thing. Kindness in healthcare doesn't have to be soft, but it can be the difference between re-traumatizing someone and giving them tools to grieve in a healthy way. Communities heal through being witnessed by each other in shared ritual, story, and silence, not by being fixed by individual therapy alone. Families are less likely to experience conflict and confusion at end of life if they understand the dying process and have had frank conversations about what the person wants long before crisis hits. One small act of kindness a week, whether checking in on a lonely neighbor or dropping something on their doorstep, can have a transformational effect on someone's life and build natural community connection.
Yes. Harpreet Kalsi-Smith is a real person who shared their own story in their own words. Kintsugi Heroes is a not-for-profit that shares first-person stories of overcoming adversity, told with the person's consent.
Kintsugi Heroes, a registered Australian not-for-profit. Every story is shared with the hero's own consent and reviewed under Kintsugi Heroes' trauma-informed content standard before it goes public.
Person-centered care means some people need more time, more resources, and more support than others to reach equitable access, not that everyone gets the same thing.
Kindness in healthcare doesn't have to be soft, but it can be the difference between re-traumatizing someone and giving them tools to grieve in a healthy way.
Communities heal through being witnessed by each other in shared ritual, story, and silence, not by being fixed by individual therapy alone.
Families are less likely to experience conflict and confusion at end of life if they understand the dying process and have had frank conversations about what the person wants long before crisis hits.
Deborah Constance (Host) · 00:05
Welcome back to Kintsugi Heroes, helping people tell the stories they need to share so you can find the stories that you need to hear. Death is something we all face, yet so few of us feel truly prepared or supported when it comes. Harpreet Kelsey-Smith, founder of The Kindness Company, is changing that. Shaped by her own experience caring for her mother, Apreet works with First Nations, migrant, and refugee communities to ensure end-of-life care is compassionate, culturally grounded, and accessible to all. In this episode, Kintsugi Heroes' newest host, Deborah Constance, sits down with Apreet to explore how kindness and community can transform the way we grieve. And how we say goodbye.
Harpreet Kalsi-Smith (Guest) · 01:05
Hello everyone, my name is Deborah Constance and you are listening to an episode of Kintsugi Heroes. My guest today is Harpreet Kelsey-Smith, who founded The Kindness Company to strengthen support for people approaching the end of their life. A commitment shaped by her experience caring for her mother in her final months. Her work centres on community care, preparation, and dignified support at the end of life, with a strong focus on equity and inclusion. HAARP works alongside First Nations, migrant, and refugee communities to promote culturally grounded accessible end-of-life care. Harpreet, welcome to Kintsugi Heroes.
Deborah Constance (Host) · 02:04
Thank you, Deborah.
Harpreet Kalsi-Smith (Guest) · 02:05
Can you tell us a bit about your journey and what drew you to work in this area and with First Nation migrant and refugee communities?
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This conversation includes from kenya to brisbane, from red cross to community work, what equity actually means in healthcare, the uncle who took 12 months to be ready, one physician who actually saw them, the gaps that leave elders isolated and communities heal in community, not in offices.
Deborah Constance (Host) · 02:16
Yeah, sure. So I think, um, a lot of this stemmed from my own lived experience. So I migrated to Australia as a little toddler, as a 2.5-year-old, when my parents migrated from Kenya. And they reinforced to me when I was raised in Brisbane on the lands of the Yuggera and Turrbal people. And they're the lands that have nurtured me and kept me safe. And as I was growing, my parents were very socially minded and constantly reminded me of how lucky we are to live in a safe place, one where there's a lot of freedom and that we need to be grateful for that. And they were very open people. So our house was always full of friends and family. And, you know, if anyone needed a place to stay, they knew that they could come to our home. So that, I think, underpinned sort of the values that I was raised with. And that That led to me, even when I was at high school, volunteering for the Red Cross Settlement Program. So I remember being a teenager and volunteering my spare time to creating welcome packs for newly arrived refugees with basic necessities. And then that stemmed to what I ended up studying, which was community development. And international relations. And so while I was at university, I was fortunate to be able to volunteer internationally. So I went to East Timor when the intervention was on and spent a number of months there. And then after I graduated, I did an internship at the South Asian Human Rights Documentation Center in New Delhi. Which was an incredible experience, and then went on to do my master's in conflict resolution at the University of Bradford. And it was interesting because there were people and dear friends from all parts of the world who were studying and trying to find a way to create a more peaceful world. But I really missed home, and they all went to conflict zones and all these places, and I came home. And said, well, there's a lot of work to be done in our own backyard. And, and started working with non-governmental organizations that work with migrants and refugees. And then from that, I sort of fell into health promotion and ended up working for now over 15 years with First Nations communities and Stolen Generation survivors, which is a great privilege. And I've been shaped by elders and teachers that have guided me over many years. There's a great deal of wisdom, I think, with people who have been through suffering and times of difficulty, immense amounts of kindness and generosity of spirit and resilience. And I'm really grateful to be able to contribute to that. But I think at the heart of it, it's about my journey with standing with people as they reclaim their power and dignity, and especially at end of life. And end of life was not an area that had honestly crossed my mind, Deborah, at all. My work was in community development and social justice. And health promotion and, and I guess those proactive areas with a range of different parts of our community and society. But it wasn't until my mum fell ill that I was sort of thrust into this world of end-of-life support and end of life. And I think why, why I, I guess I dreamt up The Kindness Company and dedicate my time and energy and efforts in this area is because when I think about the people who have been through, you know, just incredible amounts of suffering and trauma and haven't had a safe place to grow up or haven't had the freedom to do the many things that probably you and I take for granted, then when it comes to times of end of life or serious illness, then I truly believe that those people deserve every ounce of dignity, power, and control, and respect, and kindness to at least have their wishes fulfilled at that time.
Harpreet Kalsi-Smith (Guest) · 07:12
Yes, thanks for sharing all of that, Harpreet. What, uh, what a varied and full life you have lived already so far. When we talk about equity and inclusion in health and end-of-life care, how has that shaped the way you practice and what you do? And what does it look like in your practice, or in practice for you?
Deborah Constance (Host) · 07:46
Yeah, you know, I think building on, I guess, you know, the social justice dream or theme that I've just held close to me. Equity is central to that, really. And when it comes to people, whether it's women or young people or anyone who's homeless or, you know, our Aboriginal and Torres Strait Islander brothers and sisters or there's— or people who are newly arrived refugees, there's different amounts of effort that need to be put in place to ensure that certain parts of our communities have equitable access to care. And I think the difficulty that I come across is that there's a lot of systems in place and people have the best intentions, but because we live in a world of a lot of bureaucracy and systems and processes, Even though when it comes to health or community development or anything really, you know, there's a lot of bantering around about, you know, the terms of person-centered care. But to— for there to be true person-centered care, it means that some people need more resources or they need more time or they need more support to get the same level of equitable care. And unfortunately, if we just move along the way that some of our systems and processes have been designed, you know, and I think it doesn't matter if we're looking at health, we're looking at housing, or we're looking at employment, the systems are very similar and they create barriers to access. And what I try and do is really advocate. So when we say person-centered, we mean person-centered. And that takes into account people's stories, their lived experience, their histories, their culture. You know, I don't know very many people in my circles who haven't been touched by trauma in some sort of way in their lifetime, whether that's environmental trauma or, you know, losing a parent or displacement or racism. Who knows? You know, but the world that we live in is difficult. At times for many. And if we're able to truly see a person and take just a few moments out to really see them and listen and say, well, what is your story? Who are you? And how best can we support you? Just having those spaces instead of trying to push people through systems and processes is what I see as really equitable care and equitable access to, to pull together the right, um, supports to wrap around people. Because they're there, Deborah, there's— they're there, they're there. It's just taking the time to, you know, connect them in different ways.
Harpreet Kalsi-Smith (Guest) · 10:50
Can you give an example of, uh, what support might look like, those connections? That you make with and for people?
Deborah Constance (Host) · 11:02
Yeah. So for example, I think, you know, when I look at the end of life space, you know, I've worked closely with Aboriginal elders and aunts and uncles and also with, you know, various multicultural community connectors that work with different migrant and refugee communities. And conversations about end-of-life care and planning are not always easy or straightforward. And I think with anybody, you know, really, no matter what your background is, it's quite sensitive. And so the first thing that, you know, I've learned is that there needs to be, you know, a really significant amount of time of trust building. To, to create relationships that are based on trust. And it's not just of taking or giving, um, it's not transactional, I guess. And so, um, with some of the Stolen Generation uncles that I, I work with, I remember the first time I held a yarning circle around talking about end of life and the importance of planning. And the reason this— I was invited in is because there wasn't conversations happening, and then there was different conflicts that would come up. And so, you know, I said, that's why it was important for us to meet, and it was a sensitive yarn, but it was important to do. And most of the uncles appreciated that, and they shared what their, their wishes were, and were able to record that to minimize any type of conflict in the future, and also to be able to follow their wishes. But there was one uncle that got quite cranky with me and he was just like, "Hap, why are we talking about this? We don't want to talk about it." And so I sat with him and I said, "I respect that." And I said, "But I'm here. If you ever need anything, I'm here when you're ready." And it was over 12 months later that I was at another community event and he came up to me and he said, you come home today and you bring all those papers with you. And that was 12 months later. Now, there's not many services that operate in the way that they will have a 12-month, we'll just sit with you and wait period until you're ready. Um, it, it's like this pressure to, to do things now and forth, almost not in a bad way, forced, but it's those time pressures that come with people's work. And so I think that's just a small example of the importance of listening, but also respecting where people are at, but then being ready to respond when they're ready, um, to, to really— and going to them. Like, I went to his home and sat with him and, you know, went through things. And it's a It's a very deep time for people to be filling out whether it's an Advance Care Directive or, you know, the Enduring Power of— the different forms in different states, guardianship. You know, there's a range of different things and to think about that time is difficult for people. But to sort of I would frame it as walking alongside, walking alongside. And again, that trust building, which is really critical. And similarly with some of the different multicultural community connectors that I've worked with and continue to work with, The first conversations were really trust-building with them and sitting with them. And with, you know, they all shared the complexities in their communities about talking about end of life. And that in some cultures, you just can't, you know, it's, it's, it's seen as bringing on death. But at the same time, they see how important it is, because if people aren't aware of what supports are available, or what their wishes are, there can be conflict and confusion and sort of navigating that with them, but then letting them sit in that and then building on it. So, you know, to build the capacity that they have because they're the ones that hold the trust within their communities.
Harpreet Kalsi-Smith (Guest) · 15:50
Compassion, kindness, and care are such an integral part of the work you do and of your company. How would you describe the role of kindness in end-of-life care?
Deborah Constance (Host) · 16:06
Yeah, it's a good question, Deborah. You know, I think when I was dreaming up, well, where do I want to put my energies and efforts? And I was speaking with my husband and he actually came up with it. And he's like, well, it sounds like this is what you're talking about. And I was like, well, I think you're right, you know. And the reason I think kindness is so critical at end-of-life care is because that's what stayed with me in my own mum's end-of-life journey. And so there was a lot of movement, a lot of talk, a lot of people talking at her or talking at us and not with, even though the intentions of many people in the health sector are very good. You know, this is not at all to, to poke holes at, you know, the dedicated people who support all of us across the country. But it's the pressures on the system that, you know, I think end up with carer fatigue, health worker fatigue, and, you know, clinicians that perhaps don't have the time that they need to have. To really sit with people. But there was one, um, one physician when my mom was in palliative care, um, a few days before she passed that came to see my dad, my brother, and me, my mom. And I honestly don't even remember how long he was in the room for, but he actually saw us. He saw my mom and he saw us and he gave my dad the biggest hug. And he just spoke from his heart and he said, none of this makes any sense. You know, we don't know how this has happened or why it's happened, but I'm really sorry. And I'm going to light a candle for your mum tonight. He was so kind to Deborah. And he was one of the only ones, you know, in a big system and a big journey. And so I think kindness doesn't have to essentially be soft, but it needs to be there. And it can be the difference between re-traumatizing someone, you know, or giving them the tools to actually, um, grieve in a healthy way or process things in a healthy way, whether that's a person with a life-limiting illness or it's their carers. And at end of life, you know, kindness becomes critical. It really slows us down, just like that story I shared with you. It slowed everyone down. It invites in presence and it allows people to really be seen in the fullness of whatever is happening for them. And we throw around words like kindness, but in these settings, it really can have a transformative effect on people's end-of-life journeys and how they move forward or how they accept you know, the hand that has sort of been dealt to them. And so I think it's really about creating safe spaces, you know, and offering what we do, which is deep rest sessions, you know, integrating healing modalities, honoring people's cultural needs, and really making room for, for grief. And people's humanity and witnessing that. Um, because I think in healthcare settings and other settings, we just— people get labeled as their diagnoses, you know, and they're much, much more than that. They're a person with history, with love, with legacy. They have a big story. And by being inquisitive and creating those small spaces that, you know, lead with a heart space or lead with kindness naturally creates a bit more oxygen and air to just sit back and, and sit with a person and listen. Then, yeah.
Harpreet Kalsi-Smith (Guest) · 20:25
And how do you find the crossover now that you On the, on the other end, now as a provider, how do you find the crossover with both government and non-government services?
Deborah Constance (Host) · 20:46
Look, I, I honestly think there's, there's so much goodwill, um, and there's incredible people working within the non-government space and within government as well. And I think the only way we can really care for each other well is by working together. There is no other way. But there needs to be a greater voice for community and for people to come together to be listened to. And so I spend a fair bit of my time advocating and connecting directly with community and to sort of elevate those stories. And at the Gold Coast, we're currently in the process of, of mapping different Gold Coast residents' end-of-life care journeys or their partners' end-of-life care journeys to really paint a picture of, well, what's working well and what's not, and also connecting services with healthcare providers and with clinicians, and then activating parts of our civil society where there's so many people that actually want to give back and they want to contribute to see, well, where are those gaps? And I think a lot of those gaps, uh, with people who are very lonely and isolated And I was sharing with, um, a friend recently that, you know, usually I think there's this perception that within First Nations communities and also with different multicultural communities, there's a natural network of extended family and the community is close and very strong. And in some places and spaces, that's still very true. But increasingly, I know of elders whether they're Aboriginal or Torres Strait Islander, or I met an Indian auntie a few months ago and she said that her kids don't check in on her. They don't have time, you know, because people are busy. And again, this is not about blaming anyone. Our lifestyle is increasingly busy. People are under a lot of pressure. There's a lot everyone's juggling, but it can't be this way. There has to be another way. You know, we can't forget our elders and not check in on them. And, you know, you've got new mums that are struggling with new babies and those natural networks of community and extended family, they're sort of sadly getting a bit more fragmented. And so part of the work that what we're trying to do is look at everyone and look at our assets in our neighborhoods and our communities and go, well, how can we work work to reconnect some of these. Um, and, and then if there's enough people and a bigger voice with community, if some of those systems and processes are not working, we can use our voice to advocate for them to be changed.
Harpreet Kalsi-Smith (Guest) · 23:56
Yes, yes, it is certainly a multi-layer impact that is required. From, from the family and rippling all the way out to a societal level.
Deborah Constance (Host) · 24:12
Yeah, it's really important. Um, you know, we all know that across the country we have an aging population. You know, we know that a lot of people are struggling just to make ends meet. Um, you know, with the new aged care— the Aged Care Act that's come in as well. There's going to be increased pressures on, on pensioners. And we can't be, you know, we can't live in a country where we don't take care of our, our people, no matter who they are. It's not what the Australia that I grew up in is about, you know. We're about supporting each other and helping each other and giving each other a hand, not asking pensioners who are struggling to co-contribute to be able to look up to their themselves, you know, that it just, it doesn't sit right. Um, and so I think there's, there's a really big road ahead, but part of that, and I think the things that, um, I'm really focused on and the work that we've been trying to do is creating spaces within our communities for people to come together to heal. And to grieve, um, and to share story and to create ritual together, um, and to create that space. Because whether we're getting older or we've lost a job or we've lost a loved one or there's been a huge climate emergency or a disaster, there's, there's grief and loss that touches all of us. It's not just at end of life. And if we don't create spaces to release that, then, you know, we become unwell.
Harpreet Kalsi-Smith (Guest) · 26:00
Yes. And this leads into, um, the next question that I was going to ask, which is around grief regulation and community healing. And you've just started to touch on this, and I would really like to hear more around the approaches or practices that you have seen or are, uh, developing or creating that help communities grieve and heal together?
Deborah Constance (Host) · 26:36
Yeah, look, this is a real passion area of mine, Deborah, and I think I've been so fortunate, um, to be invited to, to walk alongside, um, a number of Stolen Generation survivor communities for a number of years now. And even with the work that I've been doing with some communities that have arrived from different refugee backgrounds, what's really clear to me is that communities heal in community. You know, there is a really important role for, for formal, um, therapeutic interventions, whether that's counseling or psychologists or social workers. You know, they have a huge role, um, to play. So this isn't to undermine that, but it's to say alongside that, um, especially when there's been systems that have been set up in ways where the dominant culture um, I guess puts in place what healing looks like, which is going to see a psychologist or going to see a counsellor. That doesn't translate to all communities, and there's mistrust, but also there's strong practices in collective and ceremonial healing. So whether that's sitting in circle and yarning and bearing witness to somebody. Because I think beyond cultural background, most people that I've walked alongside want to be seen and witnessed. They don't need their pain to suddenly be taken away, but they need it to be seen. And that's what a lot of collective cultures do, you know, they sit together Some of them cry together, others sit in silence together, and someone will make a cup of tea. You know, there may be song and dance or some storytelling or shared rituals. But I think we have a tendency to want to overcook things and overplan things when in actual fact, sometimes the most powerful thing is just to sit next to someone and not say anything. You know, but just bear witness to what they're going through. One of the, the simple, I guess, initiatives that I've been implementing over a number of years now is a Tree of Grief and Strength. And it's just a LED light tree. It's a pretty birch red LED light tree that I'll just take to different places with me. I think everyone's like, here she comes with the tree again. But it just creates a public space where I invite anyone who wants to write down anything that they're holding that they want to let go of and any of their hopes for the future and collectively move their bodies and move their minds to put that somewhere else. Especially with grief, you know, that it's witnessed, that their person's name might be written down, something that they've been carrying. Um, and then that's done communally. And so I think it's a place— there's, there's simple rituals and processes like that that touch into, you know, our bodies on a cellular level, I guess, you know, where grief, loss, and resilience can sit together. And it can be, you know, really seen as part of the shared human experience. Because I really think healing happens when people are witnessed, you know, not when they're fixed, necessarily. And sound. So I do do sound meditation through found healing. And, you know, when people have experienced really deep grief or trauma, it affects us at a cellular level. And I think as much as talk therapy is very helpful and useful for some people, there's some things that just sit in our bodies that are difficult to give words to. And so when it comes to things like somatic practice practice, whether it's movement. Um, I, I found Integral Sound Healing incredibly powerful because I don't need to know people's stories and they don't need to tell it to me. But what I try and do is facilitate a peaceful space of deep rest for whoever that person is or that group is to get in touch with whatever they're carrying deep in them and create some space to let some of that go or transform. But that's all done through sound vibration. And, um, you know, I, I've, I've offered this to people from many different diverse backgrounds, and, um, and it's been quite, quite powerful. So I think there's all those different modalities that we can tap into to, to collectively and individually, um, create spaces to heal.
Harpreet Kalsi-Smith (Guest) · 32:20
Yes, sounds like you do have a lot that you offer to people.
Deborah Constance (Host) · 32:24
Yeah, I've collected a few little things, but I find them of benefit to myself as well, you know, like, and I think that was— that's part of the whole life journey I've taken, is around, um, lived experience, what I've seen, you know, what needs to change. But also, you know, with complementary therapies, whether it's Reiki or sound, um, and then those innate things that we all know deep in our bones, which is just sitting next to someone, you know, creating a offering a cup of tea or going for a walk. It's, it's part of our shared humanity, you know, as, as people.
Harpreet Kalsi-Smith (Guest) · 33:06
Yes, yes, those small acts of kindness.
Deborah Constance (Host) · 33:12
Exactly.
Harpreet Kalsi-Smith (Guest) · 33:13
Still play such a pivotal role. Yes, you're starting to talk to your personal reflection. In the work that you do. Um, and when you founded The Kindness Company, what vision did you have?
Deborah Constance (Host) · 33:34
So I— yeah, um, it was interesting, Deborah, because I, um, my family, we relocated to the Gold Coast, and I, I said to my husband, I need to do something. I'm not sure what it is, but I need to create something. And I connected with some colleagues and friends who are part of the collaborative that we created. And I said, look, I don't exactly know what this is, but I know that there's a gap and I know that there's a need for holistic care. Because with a lot of the advocacy and storytelling work that I do, when community members share with me, there's these fragmented systems of care. It's not always continuous care. And that creates a great deal of stress for people when they don't know what's happening or they don't understand what's happening or what the next steps are. And so I really created The Kindness Company with a collaborative of like-minded practitioners to support our communities to live well, age well, and die well, whatever that looks like for them, or die in a supported way because, well, you know, I don't even really like that word die well because what does that mean, you know, to someone, but in a supportive and kind way. And for this to be really guided by First Nations and Eastern understandings of life as a cycle of birth, life, death, and then spirit, whatever people believe, you know, whatever their beliefs are. Because I think part of the challenge that I've seen, and this is in community where when I try and facilitate conversations about end of life, you know, I always invite people in first, say, look, you know, can I meet with you? And we're going to have a sensitive conversation. Is that okay? And it might be a bit hard, but it's really important. And most people will say yes, okay, you can stop at any time. But there is this sentiment, and I think it's changing slowly, but that we live in a death-phobic society. So part of the challenge is that even with the people within our communities that are trying to have these conversations, I've heard many times, you know, someone who said, oh, I've tried to talk to Mum and Dad about it and they just said, no, you know what to do, you just do it. And so my advice to them is like, okay, so you fill up the paperwork and just leave it there, or just tell them what you're going to do. And very quickly they will raise their head up and say, I don't want that, or no. And so you can start that process that way rather than just leaving it. So there is that challenge of sort of supporting our communities to, to be more okay with having these conversations. And at the same time, you know, I guess from a health perspective, we live in a life-prolonging society where there's so many interventions done. And are all of them necessary? You know, have there been the right conversations had with people to actually respect what their wishes are? And, you know, from our entire healthcare journey and all the health professionals involved in that journey, they all need to be okay with also having conversations about not prolonging care. And very few of them are actually comfortable in doing that. And so I think there's, there's a fair bit of work that needs to be done, you know. And that's not necessarily, again, their fault. It's their training and the systems that they work in. But the outcome for, for a person cannot be the best outcome if those frank conversations that haven't been done and they can be done in a kind way.
Harpreet Kalsi-Smith (Guest) · 37:52
Yes. And you, you must see differences for families where a loved one is approaching end of life, where they have had this discussions before crisis hit, versus the families who are having to face this decision-making when there is a crisis, which has such a huge impact on decisions made. Um, yes, what, what stands out for you in those different scenarios?
Deborah Constance (Host) · 38:33
I think that, um, like, what's coming to my mind is, you know, a current person that I'm supporting, and she's a single mom and her son is, um, will be 18 next year, uh, and she has been given limited time. And we don't know what that is, could be 6 months, it could be 2 years, but she's accepted the time that she has and wants to live as fully as possible. With that time, which includes planning. And part of that planning for her is having a living wake and having a big celebration with the people that are most important to her. Legacy planning, so putting in things, play in place for her son, and, you know, recording her stories and her wishes and everything else. For him. And at the same time, you know, advocating, which is where I'm assisting her with really understanding if there is treatment that she's being offered, what is that for, and is it beneficial or not? Because her most important thing is living as fully as she can and as presently as she can with the time that she has. And so I think her courage and bravery in accepting where she is in life is incredible. You know, I think none of us know Deborah. I don't know what would happen. Like, none of us would know how we would respond, you know, if we're thrown into a situation. But it takes huge courage that I witnessed for her to share, but also have the courage to say, I want to plan this, and I want to, like, from woe to go to the— and she loved the idea of plan, you know, planning her funeral and surprises that we're both going to leave for people once she's gone, you know. Um, and that in itself will have a profound impact on the way that her son's bereavement journey goes, because she is— she's planning for that, to put in supports for, for what his life looks like without her, which is an incredibly difficult thing to do and brave thing to do. But the gifts that she will be able to leave once she's gone is, is quite incredible, you know. So there's, there's that example, um, you know, opposed to an another person that I supported who— and, and this man ended up in palliative care and dying in palliative care, and his family was not ready for that at all. And there was confusion. There wasn't understanding about, well, what the palliative care process is. And, you know, I think a really big gap I see is that people don't understand what the dying process is, like what is normal and what's not normal. And that's because we've largely outsourced death and dying. But if we're able to reclaim it, we can gently say, actually, no, it's normal that somebody doesn't want to eat because their body's busy right now, you know. And the best way it was explained to me, which made an enormous amount of sense, was if you think about a woman who's in labor, and you offer her a 3-course meal while she's in active labor, she's gonna get that plate and throw it across the room and say, you know, what are you doing? Because her body is very busy. And the same is for end of life. When we're preparing, our bodies are preparing for death, they're slowly shutting down, but they're very busy. And so food is not something people need, but it's very difficult for families to understand that. And so that's a little analogy that I try to use. And you see people sort of going, oh, okay, you know, um, but, and, and giving them other things to do because people want to do things to support, you know, so redirecting and going, well, do you want to, you know, massage their hands or feet or read them a story or, you know, talk to them or play their favorite song. So they're, they're still being of service and they're being supportive. So when people don't understand what that process is, it can cause a great deal of distress for them when they're witnessing that. And then it can also cause tension between families and caregivers because if there hasn't been a discussion about what someone's wishes are, whether there should be more interventions or less interventions, then that can cause conflict, which is really sad at end of life. You know, I think that's one thing we'd hope— we'll hope we can avoid for people is to actually offer them some peace.
Harpreet Kalsi-Smith (Guest) · 44:15
Yeah.
Deborah Constance (Host) · 44:18
And I guess, you know, at the core of all of this is that the work that I do and my colleagues do is really about advocating that people don't need to do this alone. You know, that community can help hold you, and kindness can transform even the hardest moments in life.
Harpreet Kalsi-Smith (Guest) · 44:38
Yes. Are you able to talk about that a bit more? Um, You did touch on it earlier, um, your role in advocacy. Um, yes, however, just bringing it back to what you've just said, advocacy and supporting communities today.
Deborah Constance (Host) · 44:59
Yeah, so I think it comes back to storytelling being very powerful, you know, Deborah. And so, um, I think over the years And I guess with my background before I moved into sort of working in end-of-life care, um, I, I was fortunate through my other work roles to understand the different levels of government, the different health settings across different states and territories. So the way that a public health network works opposed to a local health district opposed to a state government and a federal government, and, you know, these crisscrossing systems and processes and funding lines. But I, I was fortunate to have an understanding of that. And when it came to whether it was, you know, creating a new health plan or a strategic priority or whatever we were doing, or evaluation, central to that was community's voices and experiences. And so that's, I think, the work that I've done forever is really trying to listen deeply and then ask for permission to use people's stories to advocate for change or to design services that meet people's needs. And also build on natural supports within communities. And so with the work that I do in supporting people, whether it's the example that I shared with you of the, the person that I'm supporting currently, or it's with the work that the Gold Coast Public Health Network are committed to doing around creating a compassionate community for the Gold Coast, which means that I'm sitting with residents and mapping their stories about, well, what's worked, what's not worked, then all of that can be used to advocate for change. Um, and, and I think it resonates whether it's government or NGOs or service providers when we're able to sit down and go, no, this is a real person in our community. And it's not just one. Here's another resident and another resident, and this is what they've experienced. And there's a few similarities here. It's not just saying things aren't good enough. It's saying, look, this is what's worked well, but there's a number of gaps and they're consistent gaps, and what can we do to actually change these systems and processes, or how can we work better to make sure that this doesn't happen again?
Harpreet Kalsi-Smith (Guest) · 47:50
Yeah, yes, certainly. Um, and two words stand out for me that you used a little earlier, and that is to listen deeply. Ah, so powerful, so powerful.
Deborah Constance (Host) · 48:10
Yeah, I think it's really, really key. And then I think, I guess with my efforts and relationships that I've built with Aboriginal and Torres Strait Islander communities and with people from refugee backgrounds and migrants, you might have heard the word, Deborah, intersectionality being thrown around now and then, like it's the flavor of the month. But I think at the heart of it, the importance of talking about intersectionality is that it's about power and access. And so when we have members of our community that may be from a Stolen Generations survivor background, because I think there's a misconception across the country where they think many people in our society feel like the Stolen Generations happened a long time ago and there's no problem now. But the reality is that we have elders living amongst us who, who were ripped from their parents' arms, you know. And the, the multi-generational trauma that comes when a family is completely broken cannot be fixed very quickly, and it takes a great deal of time and support for the healing that needs to happen. To happen. And that's where there's additional barriers for parts of our communities and, you know, our neighbors and people all around us, because the structures that are in place and the lack of understanding of what people carry and what their experience has been, um, isn't always understood well. But if we're able to pause long enough and be inquisitive and kind enough, we can get a glimpse into what people's lives are like and respond with more compassion and a bit more time to go, how can we connect you, or how can we support you better? Yes.
Harpreet Kalsi-Smith (Guest) · 50:18
Well, Harpreet, as our time comes to an end for today, is there anything else you would like to share any parting words?
Deborah Constance (Host) · 50:29
You know, there's one thing that I've just been sharing this week with friends and people that I've met, and I'm like, imagine if all of us that are able to just had one person a week that we just checked in on, you know, and, and just, and, you know, someone maybe that's a bit lonely, or we know that might be a bit isolated, and it was just a phone call, or we just dropped something on their doorstep. Doesn't have to be a big thing, but just, you know, if, if we are able to activate to do one small act of kindness, like you said, Deborah, to someone that we know in our neighborhoods or communities that can do with that, it can have a transformational effect. And we, we build that, you know. I know, um, many years ago there was a woman who is a very good friend of mine now. We adopted her as a grandma after my, my mum passed away. And she, she's part of our family, but we didn't know each other. We just kind of met, and she didn't have a family in Sydney where we were living, so we became adopted. We just adopted each other. Do you know? And it meant that if my daughter was sick and had to go to school, she'd come and look after her. Or if she needed a hand, we'd go. So it doesn't need to be forced or these big things. There can be natural, natural connections. And I think I would just encourage everyone to, um, to do— to commit to doing something small. Do your end of life plans. Contact me if you need a template. I can send you a template. Yes, yes.
Harpreet Kalsi-Smith (Guest) · 52:22
Thank you, Harpreet. Thank you for sharing that. Um, and, uh, yes, and thank you for all the work that you are doing in this space of supporting people approaching end of life. Thank you.
Deborah Constance (Host) · 52:43
Thank you for inviting me, Deborah, being such a wonderful host.
Harpreet Kalsi-Smith (Guest) · 52:48
Thank you for being a wonderful guest. Yes. So, and thank you to all our listeners for listening to us today. And to all of you, take care. You've been listening to Kintsugi Heroes, and please do tune in and listen to the next episode when it's uploaded and recorded. Thank you very much, Harpreet.
Deborah Constance (Host) · 53:27
Thank you for listening to this episode of Kintsugi Heroes. Thank you to Colin Lilly for permission to use Broken as our theme music for this series. If you enjoyed this conversation, share the podcast with a friend and let us know by leaving a rating and review on Apple Podcasts, Spotify, or wherever you get your podcasts. If you'd like to support Kintsugi Heroes and the stories we share, head to kintsugiheroes.com.au and follow the instructions to make a tax-deductible donation. Thank you for listening, and we'll see you next time.
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