Episode Summary
In this episode of Palliative Talks, Kath Murray and Nadine Persaud explore what it means to truly integrate a palliative approach in long-term care. They discuss the importance of small, meaningful gestures, the power of silence, and reframing questions to restore dignity and purpose for residents. Nadine emphasizes that palliative care is a collective, team-based effort—one that values every role, from PSWs to housekeeping. Through powerful stories, including pandemic-era innovations in grief support, she illustrates how psychosocial care and interdisciplinary collaboration can transform end-of-life experiences into moments of connection, meaning, and humanity.
Episode Guest
Dr. Nadine Persaud is currently the Executive Director of the Kensington Hospice, the Senior Director Client Services at the Kensington Gardens, and the Interim Executive Director at The Second Mile Club of Toronto. She is also the Regional Clinical Co-lead for Palliative Care at Ontario Health. Dr. Persaud is also an Assistant Professor at the University of Toronto through the Department of Family and Community Medicine. She has been working in the hospice palliative care field for the past 18 years. She sits on the Accreditation review panel for Hospice Palliative Care Ontario and on the Operations Committee of GIPPEC (Global Institute of Psychosocial Palliative and End-of-Life Care. She is also a member of the North York Health Partners Integrated Palliative and Supportive Care Committee.
Dr. Persaud received her Bachelor of Social Work and minor in Psychology at Toronto Metropolitan University, a Master of Social Work at York University, and her PhD in Palliative Care at Lancaster University in England. She also holds a certificate in Organizational Leadership from Harvard Business School. Her research interests include the importance of making palliative care equitable and accessible to individuals who are structurally vulnerable, maximizing supports that are available to healthcare providers working in the field, and the supports that are available to adolescents and young adults living with advanced cancer at the end of life.
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Transcript
00:00:10 (Kath Murray): Hello, Nadine. Good to be with you today.
00:00:13 (Nadine Persaud): It’s wonderful to be with you, too.
00:00:15, (Kath): I’m going to start by introducing you, and then we will get into some discussion about some great things around integrating a palliative approach. Doctor Nadine Persaud is the executive director of Kensington Hospice and the senior director, client services at Kensington Gardens Long Term Care. She has been working in the hospice palliative care field for the past 18 years, and is the regional clinical co-lead for palliative care at Ontario Health. Doctor Persaud is an assistant professor at the University of Toronto through the Department of Family and Community Medicine, sits on the Accreditation Review Panel for Hospice Palliative Care Ontario, and on the Operations Committee of the Global Institute of Psychosocial Palliative and End of Life Care. Nadine is also a member of the North York Health Partners Integrated Palliative and Supportive Care Committee.
And I think that I love this piece about you so much in terms of your foundation, that you have a master’s in social work. And for me as a nurse, there’s a couple things I absolutely love, and one of them is working with personal support workers and another one is working with social workers. I can’t get much better than- than that in terms of, if you’ve only got two people you can take in your pocket, those are the two I want to take. And I was around when you got your PhD in palliative care a few years ago, and that was exciting to celebrate. Nadine’s research interests include making palliative care equitable and accessible to individuals who are structurally vulnerable, maximizing supports for health care providers working in the field, and supports for adolescents and young adults living with advanced cancer at the end of life. My name is Kath Murray. I’m a hospice palliative care nurse, educator and author, and co-founder of Life and Death Matters. And it is great to be with Nadine today and some of the things that- that are so incredible about you are the things that you have accomplished at an organizational level. It’s amazing what you have made happen.
00:02:19 (Nadine): Thank you so much. That means a lot. Thank you. Especially coming from you.
00:02:23 (Kath): Well congratulations. And, as much as I would love to talk about some of that, today we are going to go from an organizational level right down to front row seat in- in person centred care. So, let’s talk about a palliative approach to care. And in particular I want to start with a question for you. How do you define a palliative approach to care?
00:02:49 (Nadine): Yeah it’s such a- it’s such a beautiful question. And I think that when I think of palliative care, I think of care that is equitable, care that is holistic, and care that is truly person centred. I think of care that’s integrated from the moment of diagnosis, and where we focus on what matters most to the person. Where we focus not just on the medical, but on the spiritual, on the psychosocial, on what meaning means, and what life means, and which living truly means. I think when I think of palliative care, I just think of quality of life, and how to maximize that quality of life for people living with life limiting illness.
00:03:24 (Kath): How does that get integrated in different settings? Now, I know that one of your settings that you have worked so hard to bring a palliative approach to is long term care. So let’s focus on- on Kensington Gardens. And how do you see integrating a palliative approach to care there? What are the stories and the things you’ve seen?
00:03:46 (Nadine): I think, you know, what’s so important is that years ago, when people were moving into long term care, people were coming in and asking for a parking spot. People were coming in much well, or they were much earlier in the trajectory of illness. It was very much more like a retirement home if you think of long term care many, many years ago. And as time has progressed, long term care has evolved to becoming really clinical settings with people who are much sicker, much frailer, with much shorter trajectory of illness. So we know that the average length of stay in long term care is about 18 to 22 months. And if you think about that, that’s a short amount of time. So when we think of long term care, so many people think, “oh, you do palliative care in long term care?” And I think the pandemic really highlighted the gaps of palliative care within long term care. Which, we all knew, but doesn’t make a lot of sense because so many people die every year in long term care, or so many people die in hospital rooms coming from long term care. So I think one of the most important settings is if we’re going to call long term care home, we have to integrate palliative care into the homes of long term care.
We all have to talk about advanced care planning in palliative care because quote status is something that we all talk about. And that’s the moment when you have the ability to really start the conversations about integrated palliative care earlier on. So when we talk about early integration we often think of that surprise question. If someone were to die within a year or less than a year, would you be surprised? Well, the surprise is that people live 18 to 22 months in long term care. So no, we would never be surprised. So why don’t we talk about early integration of palliative care? So I think what’s most important is integrating palliative care as soon as somebody moves into long term care. The amount of families that I support that when we say, “and your loved one will die here,” their shoulders go down. Because when you think of homes where the waitlists are 4 to 5 years and they’re like, “oh, so we don’t have to find a place after.” It’s such a relief knowing that we can provide palliative care within this setting, so people can be here with the people that they know, in the setting that they know. You know, you integrate a palliative care approach by finding champions within your home that can really be those palliative care champions and champion the work.
So, starting from physicians, to nurses, to PSWs, to social workers, to housekeepers, everybody can play an active role in integrating palliative care earlier on in the trajectory of illness. And I think what’s really important is involving the resident and their family members, or their chosen family, into the development of their care plan. If we can develop palliative care into their care plan, it ensures that they die where they want to die, whether it’s at the home. Some people always want to die in an emergency room, or in an in a hospital setting, and that’s okay too, as long as somebody chooses the place they want to die in. So, families come in really anxious after moving into long term care. And, you know, we also have a hospice next door. And I remember during the pandemic, the staff said “so many people are dying here.” -Because, you know, there was Covid outbreaks and- “so many people are dying. But we don’t do that here. That happens at the hospice next door.” And it’s like, no. People die here. Just not as quickly as we were seeing people die within those years. We’ve created that hospice as a place that people go to places to get palliative care, not knowing that we can integrate it earlier on wherever the person may be. So I think that when we think of the nontraditional settings of where we provide palliative care, whether it’s a long term care home, or a shelter, or on the street.
00:07:14 (Kath): What great thoughts. And I- it makes me want to go in a whole bunch of different areas. But one really practical question is for you and your team. How did you learn to put the d-word on the table? How did you develop that skill?
00:07:27 (Nadine): It’s really hard still to put that- that word on the table. And I think when, you know, I started a lot with not using euphemisms. So every single time I see a euphemism like passed away, I right away edit it out to died. And now people know that they’re like, oh, but it sounds so harsh. And I’m like, but it’s not harsh. We have to normalize the word death if we’re going to celebrate life. And you know, when I started, at Kensington, we were everybody would get an email that said Mr. Smith expired at 10 p.m. or whatever. So then everybody would know, right? And I was like, we don’t expire. We’re not milk. That’s not like- So I started this thing where every time somebody dies, we write a short eulogy for them, and that goes out every day. And I’ve been at Kensington now for almost 12 years, and that goes out. And I started writing those. And for me, it was therapeutic to be able to write about somebody at a stage in life when we got to know them. And that is that tradition is continued on now, and now somebody else has taken that over and does that. But what it does, is it just ensures that we could talk about death, and we could talk about life, and we could talk about living. So I eliminate euphemisms. So now people know, they don’t say, you know, passed away or whatever it is. We call it what it is. And we sit with the discomfort of knowing why it’s causing discomfort. So often I’ll say, “so why is it causing discomfort?” “Why is it uncomfortable to say death?” “And why is it uncomfortable to say- to say dying?” And some people always sit in that discomfort and that’s fine. But it’s- we can’t project our discomfort onto others and not normalize death in a way that’s meaningful, if we keep avoiding the word.
00:09:07 (Kath): I like the idea that we need to get comfortable with being uncomfortable. And then, sometimes, as we get more comfortable with being uncomfortable, we get more comfortable.
00:09:17 (Nadine): Yeah, exactly. And it’s interesting because it’s like your self-reflective process where you’re like, wow, I used to- I started out not being able to say, you know, death and dying like 18 years ago. And now I cringe every time I see somebody avoiding saying it. So your comfort level changes when you’re able to turn inwardly and say, “where is this coming from? And how can I change to be able to really support what I advocate for every day?”
00:09:40 (Kath): You just mentioned just a minute ago about if somebody wants to die in emerg, you know, that’s- that’s okay. But we need to they die and emerg because we know they want that- that’s where they want to be. Can you talk to me about kind of the bigger picture about why dying at home is often the preferred?
00:10:02 (Nadine): Yeah, I think right off the bat would say because death is not a medical event. And hospitals are built for medical events. You know, they’re built for really serious illness, acute illnesses where people need to get the help that they need because they can’t get it anywhere else. And we’ve medicalized death to the point where people think you have to die in a hospital. And I think that’s the first thing that I would say is death is not a medical event. It is a normal part of life, where we can provide the care we need outside of the traditional settings, where we usually see people die. And I think if you look at the majority of Canadians, majority of Canadians say, I want to die at home. And we started redefining what home means, because home doesn’t actually sometimes mean their house. It can mean a hospice. It can mean a shelter can mean on the streets, on a bench that they’ve looked at forever. So how do we even define home, when we say we want to die at home? We want to die at home with the right care, with the right level of supports, with the right expertise, where our families are not experiencing burnout. So there’s much more to it than saying, I want to die at home. There’s so many pieces that have to get together to ensure that that dying experience is one of meaning, purpose, choice, dignity, compassion, and control, which often isn’t really possible because as we know, we have a fragmented system where we need to do better in the way we provide palliative care in the nontraditional settings. In people’s homes, in long term care. So the aim is to die at home. But the aim is for us as providers to figure out, and system leaders and everything else, to figure out: How do we make dying at home meaningful so that people aren’t suffering? Because often, you know, I once had a patient say to me, “Nadine, I have it easy. All I have to do is die. My family has to live. They have to grieve, and they have to mourn.” That’s the part we have to remember that after that loved one dies, their family, their chosen family, multiple people have to figure out how do I move forward without this person in my life? And if that journey of death was one of angst and was one of suffering, and whatever it may be, it takes away from why the dying at home experience is so special.
00:12:07 (Kath): Nadine, one of the stories I. I love that you shared a while back was about a celebration of life that occurred before someone died. Can you share that story?
00:12:19 (Nadine): Yeah, we had somebody who was- I think she was like over 100, and she said that “I don’t want everybody to celebrate me when I’m no longer there, and I can’t hear what they’re going to say about me. I want to be alive so everybody can, can say what they want to say, and I can be there.” And we facilitated this celebration of life with her there. And we’ve done this a couple of times, actually and this one was the first one that I had supported, and it was one of the most meaningful experiences of my life. Because often, you know, my- my sister’s mother in law died last week, and we were at the funeral on Monday, and it was such a meaningful event where so many people were sharing stories and talking about memories. And I thought she was in hospice. And I said to all the family members, “say what you’re going to say at the funeral to her now so she can hear these things.” And that’s what they were doing. One by one, they were going in the room and saying all the things they ever wanted to say to her, because that pivotal experience in my career shaped the way we should care for people while they are alive. How beautiful is it that when somebody is at the end of their life, they can hear all of these beautiful things that people always want to say? And the family members and the friends can be like, “I got to say that. And that person got to hear it.” So for us, we all just sat there, and like, to see the meaning, and the emotion, and grief just transform into this beautiful oasis of purpose was such a beautiful moment for all of us.
00:13:47 (Kath): Lovely, lovely. Tell me about legacy work. What have you learned about legacy work?
00:13:53 (Nadine): I’ve learned that it’s very important, and I’ve learned that you have to define what legacy work means. Legacy work doesn’t have to happen when we want it to happen. It has to happen when the person is ready for it to happen. And the way we define legacy is so different for so many of us. But my- my lesson there was people have to do things when they’re ready. And legacy is such a gift. It’s a gift that we leave for the people behind. And it’s a gift that we leave for ourselves to be remembered. So I think it’s so important that we take those moments to say “legacy work is important, but let the person decide when they’re ready to do that.” We had somebody at the long term care home who just wanted to play music for her family and play it when she was alive. And that was important to flip the switch and say, “don’t play it when they’ve when I’ve died, let’s invite them for a concert.” So having people define legacy and what they want it to look like is important.
00:14:44 (Kath): So when you refer to legacy work, you’re referring to anything from leaving songs, stories, letters, stories of your life, messages, photo collage, any of those things.
00:15:01 (Nadine): Yeah. And it may even be like spiritual practices that their loved one says, “I want you to continue doing this for me, this was important for me.” I think it’s- it could be tangible things. It could be non tangible things. It’s what maintains that person’s memory when they’re gone. So, for some people it’s eating pizza on their birthday because that’s what they loved. And that’s what you would do on every day, whether it’s Mother’s Day, Father’s Day, their birthday. That’s what maintains that legacy. So asking them, “how do we remember you?” “How do you want to be remembered?” I think is the way you just start the conversations about legacy.
00:15:33 (Kath): Lovely, lovely. Introducing a palliative approach earlier could make things easier, could make things more difficult. In what ways do you see it making things easier, or more difficult.
00:15:53 (Nadine): Yeah, I think, you know, for the- when you’re living it, it makes it difficult. Because, that means you’re accepting the mortality of what the reality is, and you’re accepting the fact that you are dying. And I think that’s what makes it difficult is the permanency of death and grief. But what makes it easier is being able to know that you’re talking about the conversations that will make you live better until you die. And I think you’re able to really be more intentional with what you do, and how you spend your time. Because if we’re if we don’t talk about integrating palliative care earlier on, people often go into crisis. And in long term care, people will go into an emergency room or at their home, they may just end up in a place they never wanted to be because we’re in crisis mode. So when we talk about palliative care, we say, how early can we do this? People don’t know these things. So it’s our job as health care workers to always think about how we integrate it earlier on. It’s harder to accept, but it makes it easier when we think about the grief process and how we do things as a team. It opens up conversations about grief. It supports the role of non-regulated health care workers like PSWs, who spend the most time at the bedside, who know the patients the best, and are able to give so many nuggets of- “They love this music to be played at all times. Make sure you do it.” Things that we would miss. So when we open those conversations earlier and expand past the care team that we often speak to, we’re able to provide better care and there are better health outcomes.
00:17:30 (Kath): So on the one hand, you started by saying it’s harder because you talk about- you’re talking about death. And then you went on to say it’s easier, because you’re talking about death. So that two sided piece.
00:17:42 (Nadine): It’s exactly that. And I think the- the heart changes. The same way hope changes. Yeah. So in any trajectory of illness, hope continuously changes, and hope evolves. Right? People diagnosed with illness think, “okay, I’ll get a cure and I’ll get better.” And that hope continues to change with, “I’m not going to get better, but I’m good. I can still be able to golf,” or, “I’m not going to be able to golf, but am I still going to be able to spend time with friends and families and conversate?” So the same way hope changes, the same way our comfort level changes as death comes near, hopefully we learn that you know we have to accept this. And how do we kind of move towards the meaning and purpose of what this is all about?
00:18:20 (Kath): In long term care, time is of the essence and, in many ways, especially given rules and regulations. And that- that long term care though, is we’re trying to create a home we’re also- we can also feel very task oriented. When you think of little things that make a big difference, what do you think of?
00:18:45 (Nadine): And that’s such an important question, because I think we can only think of the little things that make a difference in long term care, because everybody has a task, and everybody’s doing something little to fulfill the bigger needs of the person they care for. And the regulations are so many regulations, but I don’t think regulations are an excuse for not being able to provide excellent care. I think regulations tell us this is what we have to do, and we decide how we do it well. One of the biggest challenges in long term care is the fact that, you know, people are under staffed and overworked. And people become so task oriented that we lose the essence of what we’re truly trying to do, because that’s what we do, right? We just focus on the task because we have to get everything done. And the little things that make a big difference is just saying to a resident, instead of saying, “how are you today?” I mean, often people will be like, “how am I today? I’m stuck in a bed and I can’t go outside like I can’t. I’m not who I was.” Switching the conversation to say something like, “what is important to you today?” “How can I help you today?” But it gives somebody back that sense of control, meaning, and purpose that’s often lost in the generic, “how are you today?” Asking them, “what’s important?”
“What can I do for you today?”
00:20:01 (Kath): And today. Not just what “can I do for you?” But, “what can I do for you today?” Or, “what can I do for you right now?”
00:20:06 (Nadine): Exactly. Yeah. And I think it’s like it’s a moment-
00:20:08 (Kath): Beautiful.
00:20:09 (Nadine): -puts you in that moment. I think, you know, small things we look at, like just adjusting someone’s pillow offering someone their favourite snack, or just sitting in silence, and not saying anything at all. The power of silence is so beautiful. But as humans, we are so uncomfortable with silence. Like now. I’ve realized that no, you don’t have to speak every time you’re with somebody. So the words listen and silent, have the same letters in them, and I don’t think it’s by accident.
00:20:33 (Kath): Ah! Say that again.
00:20:35 (Nadine): The words listen and silent, have the same letters in them, and I think it’s on purpose. Because, sometimes we just have to sit and be silent and listen and have nothing else to say, no feedback to give and just hear what people have to say. And we see so much meaning and purpose in sitting at someone’s bedside and maintaining that silence, for them to just feel seen and heard in a way that’s very different from just filling it with the weather, or how someone is, you know, or traffic, such meaningless conversations. When silence is so powerful and it’s a small thing that we can do to hold space for reflection, for suffering, for grief, for purpose, and meaning.
00:21:15 (Kath): Well, so when you’re silent, you give the other person the power to decide when talking begins.
00:21:21 (Nadine): Exactly.
00:21:22 (Kath): And when people have little power over so many things. So we have talked about integrating a palliative approach, ideas for that, about how it makes- how integrating a palliative approach and using the “D- Word,” talking about death can make it harder and easier all at once. We’ve talked about time being the essence. So Nadine, I think of team- palliative care as being a team sport. And you have done an incredible job of cultivating palliative care teams. And I wonder if you can talk about some of the things that you’ve done to help strengthen teams and some practical suggestions you have. Yeah. And I wonder on the word sport, because I often think, you know, with a sports team there’s winning and losing, and I don’t think anybody loses in palliative care. I think it’s a way we redefine winning. And I think- I definitely think it is a team approach to care. And we often miss that. And we need to like, rebrand our mindset that it’s not just a nursing initiative, it’s not just a doctor initiative. It is an interdisciplinary team that comes together and really works well together. Because if we often think of a team sport, they’re all playing the same team, the same game. But when we think about palliative care, everybody’s role is different. And I guess with sports, everybody’s role is different, because I’m not a sports person, but you have different, I don’t know, positions. And you come together and you create this beautiful team. That’s what makes palliative care so beautiful and unique In that we bring that team approach to it, which is so different from many other disciplines. We value nurses, PSW’s, music therapists, housekeeping. I’ve seen housekeeping hold space for such existential conversations that don’t happen with leadership administration. It happens with the people that are so personal and intimate to them in such a way that’s so beautiful. And I think that’s the beauty of palliative care. You know, the first thing we did was we don’t call our nursing stations nursing stations anymore. We call them team stations, because that’s what it is. It’s everybody should feel welcome. Now every PSW comes to rounds. They spend the most time at the bedside. So it’s reshifting and rebranding the way we think about how we approach palliative care, and recognizing that everybody plays a role, and everybody’s role is meaningful, no matter how long it is and how short it is. And I think just thinking about how do we create space where everybody feels as if they’re contributing to something larger than themselves.
00:23:50 (Kath): So I have talked about- about just the value of social workers, counsellors on the team and being able to have access, and I want to come back to that. But in so doing, I have neglected to mention other members of the team. And I appreciate that you have talked about the importance of- of all members of the team. And thank you. Thank you for that. Sometimes people are working in settings where they don’t have- or they may not even know that there’s a social worker. And yet, most long term care homes do have someone. How do people reach out to a team that they may not even know exists? How do they find out about those team members?
00:24:40 (Nadine): I think that the psychosocial support that we need is often the thing that people often say, “oh, I’m fine, I don’t need that. I’m coping well.” We had done a study years ago on the quality of death and dying, and we had found that managing pain and symptom is really good, like physical pain. But where the lacking was was around existential distress, total pain, the suffering that people experience that is nonphysical, emotional, mental, spiritual. And when we think about grief and we think about how important it is to acknowledge grief, we have to involve social workers in those conversations. It takes me to the pandemic, where people weren’t able to visit, and part of the biggest- we’re talking about teams, right? Family members are a part of that team. So when you tell your your family member, you can’t come in and visit because we’re not allowed to have visitors because of the pandemic. How did we impact people’s grief and their grief experience? And, you know, I just remember we were in the midst of a horrible outbreak and, nobody could come in and and I was like, “we have to do better.” Because, people weren’t able to see their loved ones. And it just so happened that, like, the door to the dining room was the only part of the campus that we can access through the street level. And I had an iPad on the outside, and there was an iPad on the inside, and that’s how people were saying goodbye to their loved ones. And those are the ways social workers think and creative ways of how do we acknowledge grief, because we know that that’s what’s going to impact everybody after. And I remember the first one I did as like a test. Let’s try this out. It was freezing cold outside. I’m like holding, actually was my phone, in my hand is shaking. And their whole family had come and they this man had he didn’t speak for like many, many days. And they brought his big golden retriever and they held it up to the, to the door. And they said, “dad, look who came to visit.” And then they said the name of the dog. And he opened his eyes and he said, “I knew you would come.” And, you know, in a horrible time of not being able to touch, have human touch and connection, we were able to reinvent what grief could look like and what care could look like. And that family still talks about how meaningful that moment was. For me, it was so hard. We’re all wearing masks. We’re like crying. And here is this beautiful moment with their dog. And actually, one of our recreation staff sat at the bedside holding an iPad for over two hours so that the family could see him take his last breath and that’s the beauty of all of the interdisciplinary team. That’s the beauty of allied health. That’s the beauty of psychosocial care. That’s the beauty of acknowledging total pain. Not just the physical, but the emotional, the mental, the spiritual, the grief that we’re all going to experience. Because grief is a part of life, whether it’s through death or any loss. But that’s what psychosocial care does. It grounds us in a way of saying, let’s acknowledge this and find meaning and purpose.
Despite all the noise.
00:27:39 (Kath): We’ve had some touching moments in this podcast series, and, I- I think that’s the moment that I’ve reached for the Kleenex- the Kleenex. The story of the beautiful golden retriever. Now, I think that lots of people have good psychosocial skills and lots of different team members. And it’s not to diminish that. But sometimes when we are struggling in a situation when we cannot figure what’s going on, sometimes we’re not figuring it because we’re lacking, an expertise. And I think that’s one of the times to call for social workers. So when I think of “who do you call? Ghostbusters?” No, you call social work. And and I’ve just seen phenomenal things over the years that social workers have helped guide us through. I think one of the things that I’ve loved so much about being a hospice palliative care nurse is being a member of a team and being valued, and that my voice as a nurse, my assessment as a nurse being valued and what a privilege that is. And to be able to work on a team where we can also access physicians, where we can access volunteers, there such a gift there. Thank you for talking about team. And though I love the the phrase a team sport, I totally agree with you that this isn’t just something about winning and losing. And so maybe I have to drop that that phrase for exactly that reason, though I did think it sounded kind of fun.
00:29:20 (Nadine): I actually thought it sounded fun too. You know, you said it, and I’m like, you know, I’m talking so much of the dichotomy between, you know, palliative care and death and like the negativity that people have. And I’m like, maybe it’s, you know, sometimes the language that we use, it’s our it’s it’s so meaningful. But if we are as being like self-reflective, I’m like, maybe I wonder because people often think of palliative care is losing. They often think I’ve lost. It’s the end of the game. Failure. We train health care workers to be heroes. We train health care workers to cure people, to make people better. And a lot of my advocacy is on flipping the switch on what the hero means, because as health care workers, when you’re not that hero, that’s when you experience failure, burnout, moral distress. So how do we switch the narrative around, you know, winning and losing, where often people see palliative care as the end game, they see hospice care is the end game. There’s no more winning. We’ve lost the battle. And we put all those- using those- metaphors on people. “Winning the battle.” “Fighting the great fight.” You know, all these these war, metaphors we used to explain people, you know, who are living with cancer and people that have, you know, survived cancer. But it’s like the opposite of that is losing. And you often see the Grim Reaper in this, like, hood, wearing all black. And it’s like, often like, you know, you walk into a hospice. We see death and dying every day. And people often say, “we hear you guys laughing all the time.” And it’s like, that’s what we do. Meaning and purpose. There’s not just people who are- The Grim Reaper is walking around every day, you know, and it’s a misconception and it’s switching that. It’s a huge mind shift.
00:30:48 (Kath): It is. It is. So, that- it is time for us to have a culture shift in palliative care and in integrating a palliative approach and within that, you have done a marvellous job of joining and melding geriatric, excellent geriatric care, excellence and dementia care, with excellence in palliative care. Way to go to you and your team. And I appreciate your comments made earlier about identifying palliative care champions and how wonderful that is. You’ve mentioned when we’ve talked about some of the resources that you’ve, that you found really helpful. Do you want to just, finish with some of those that, that you’ve been able to tap into?
00:31:39 (Nadine): Yeah, I think, you know, we’ve developed a specialist palliative care team, which consists of, like myself, palliative care physicians. And we work alongside the care team, to provide specialist palliative care with the, with building capacity at the bedside, having people, the staff and the team members be able to really work through providing palliative care that’s meaningful. I mean, SPA LTC is another program in- in Toronto that’s been really successful. And I think, you know, really looking at how do we identify what the priorities are within our home to figure out what’s important. And we know palliative care is important. And how do we train more people. And it’s not just about providing education because turnover is so high in long term care. And then by the time you train people leave and you have more people. So if we expect education to be the only tool, that’s why we keep ending up with not doing as well as we can. So it’s about really changing the culture, making palliative care everybody’s business. Regardless of who you are, it’s all of our job to ensure that people live and die well. And I think that when we’re able to make it everybody’s business, people take on ownership of wanting to be part of that. So I think it’s shifting and it’s really finding the resources. It’s amplifying education in a way that it’s not just, you know, watching a course, or taking a course. It’s how do we ensure that everybody is speaking the same language, singing from the same songbook and really talking about early integration. Separating the difference between hospice care and palliative care, which is often so, intermixed and used interchangeably. But we know they’re very different. So just even starting with, how do we talk about language, where is the resources that really talk about language and how we talk about grief? Nobody really talks about grief. So how do we talk about grief? How do we talk about death? How do we support healthcare workers who see grief at a level that is so different from anybody else? And we don’t talk about the grief that we experience as health care workers enough. And we often think about, you know, how do we oh, you know, let’s talk about employee wellness. It’s more than ice cream trucks. It’s more than appreciation of staff events. We really want to talk abou how we support health care workers. We have to talk about how we give them the tools and the resources they need to make- move through whatever it is they’re experiencing in their own grief. It’s up to us to find meaning and purpose in what we do, to find moments for self-reflection and to identify those small victories. My hour and a half commute is where I identify my small victories, and that’s what sustains me. So my biggest takeaway is take time to identify those small victories. Take time to turn inward. Take time to change euphemisms, change culture and acknowledge death is part of life and really celebrate every single moment. It’s an honour for us to walk the journey of grief with the people that we care for. It’s an honour to sit at the bedside and not have the answers to life’s greatest questions. But how meaningful is it that we get to appreciate the small things in life? Because we get to sit with people at the most powerful time in life. Death. So I think it’s a time for a shift. It’s a time for us to really celebrate what we’ve done, and look forward to the future of what will be. Because, we are in our palliative care era right now. Everybody’s talking about palliative care. Nobody was when I started 18 years ago, but everybody’s talking about palliative care now, and I’m so excited for the future to see what will hold and how we transform the way we acknowledge death and life as one.
00:35:00 (Kath): Nadine, thank you.
00:35:02 (Nadine): Thank you for having me.
00:35:04 (Kath): What a sweet time. What a lovely time to be with you. And as I- as I think about how we educate, or how we mentor, I think about the incredible thing it is when we call someone in to ask for their help and instead of having them go into a room on their own, that we go in with them and we get to watch them. And, how we would all love to, I think, join you on a visit and be a fly on the wall.
00:35:36 (Nadine): Thank you so much. I love spending time with you. So, thank you.
00:35:41 (Kath): Thank you. This podcast is part of the Hospice Palliative Care Ontario’s Education programming. Please visit the HPCO.ca website for further- further resources, courses, webinars, etc. and please join us for further episodes of Palliative Talks, a palliative care podcast. Thank you.
