What if reframing palliative care as an early, community‑rooted approach could transform how Canadians navigate serious illness? In this episode Dr. Hsien Seow and Sheli O’Connor discuss how education, public engagement, and patient‑centered care can reduce stigma and ensure more compassionate support for patients and families.
What if reframing palliative care as an early, community‑rooted approach could transform how Canadians navigate serious illness? In this episode Dr. Hsien Seow and Sheli O’Connor discuss how education, public engagement, and patient‑centered care can reduce stigma and ensure more compassionate support for patients and families.
Dr. Hsien Seow is the Canada Research Chair in Palliative Care and Health System Innovation and a Professor in the Department of Oncology at McMaster University. He is an ICES scientist who publishes health care research focused on palliative care and serious illness. He is the cohost of the Waiting Room Revolution podcast, and author of the book, Hope for the Best, Plan for the Rest.
Sheli O’Connor’s more than 30‑year career in community‑based work has focused on educating, supporting, and empowering people to advocate for themselves within the health care system, including developing an elder abuse response network and strengthening supports for vulnerable older adults. She went on to lead a three‑year Advance Care Planning initiative and, as Director of Community Engagement for Hospice of Waterloo Region, worked to reduce stigma around dying, death, and grief through cross‑sector collaboration and public engagement. Most recently, she founded “Dying to Learn,” a consultation and project‑based business dedicated to building compassionate, community‑rooted approaches to palliative care. Guided by her conviction that “if it doesn’t happen in the community, it doesn’t happen,” Sheli focuses on building compassionate communities where people are supported where they live, work, pray, and play. She holds a Master of Social Work degree in Community Development and brings over three decades of experience collaborating with the public and community partners in creative, evidence-informed ways to strengthen collective understanding and confidence in caring for one another.
ICES Research you heard about
ICES | Timing of palliative care, end-of-life quality indicators, and health resource utilization
Misty Pratt
Hi everyone, and welcome back to In Our VoICES, the podcast that brings you the health data without the drama. I'm your host, Misty Pratt, and I'm one of the people working behind the scenes at ICES, a health research and data analytics institute in Toronto, Canada. Before we jump into our first episode of 2026 we have a quick update about the podcast, one that we think will make your listening experience even better. Until now, In Our VoICES has been released in seasons. It's given us the chance to explore topics in depth, and you've heard from experts and people with lived experience. But as our community grows and as we hear more from you about what you love, we've realized something- you want to hear from us more often and in a more consistent rhythm. And honestly, we want that too, so we're making a shift. Starting now, instead of releasing episodes in seasonal batches, In Our VoICES will be published monthly. This means a steady, reliable flow of data driven research and insights from our experts. No long waits between seasons, just meaningful conversations month after month that keep you connected to the work happening across our healthcare system. We're excited for this next chapter, and we hope you are too. Thank you for listening, for sharing and for being part of the In Our VoICES community.
Misty Pratt
Chronic illness and death are not topics that many people enjoy discussing. Getting the right support and receiving the care we prefer at the end of life can reduce suffering and ease the burden on our caregivers. Recent data shows that 58% of people who died in Canada received some form of palliative care, yet end of life care should be accessible to all people. Our guests today are Dr Hsien Seow and Sheli O'Connor. Dr Seow is one of our ICES scientists, as well as the Canada Research Chair in Palliative Care and Health System Innovation, and a professor in the Department of Oncology at McMaster University. He is also a very successful podcaster as host of the 'Waiting Room Revolution', and author of the book 'Hope for the Best, Plan for the Rest'. Sheli O'Connor holds a Master of Social Work degree in Community Development, and brings over three decades of experience collaborating with the public and community partners in creative evidence informed ways to strengthen collective understanding and confidence in caring for one another. Most recently, she established her own consulting business, Dying to Learn which strengthens the voice of individuals in their own healthcare journeys. Welcome Hsien and Sheli to In Our VoICES.
Hsien Seow
Thank you, Misty for having us, a pleasure.
Sheli O'Connor
Very excited to be here.
Misty Pratt
Yes, we're excited to have you and talk about this topic that no one wants to talk about sometimes. So Hsien, because we don't talk about dying, and often, I think, myself included, we're in denial that we're going to die, I think the average Canadian would not be able to explain how palliative care works in Canada. So can you give us a little rundown of how the system functions, especially here in Ontario?
Hsien Seow
I think you know, as much as you know, people associate palliative care with dying and death. I really think about palliative care is about living, living as fully as you can, and yeah, and being as present in your community and for yourself. But I think the place to start is the definition of palliative care. I think people think it's a service, but it's actually a philosophy. It's an approach to care that looks at the whole person and their family and really focuses on what's important to them and their quality of life, which would include things like managing your symptoms but also trying to reach your goals. So with that in mind, the system works in a different way, as you know, because palliative care is a specialty, and that means that there are, you know, say, doctors who get extra training in this specialty of palliative care, and that has led people to think, or sort of the practice to be, that you refer to a palliative care specialist at a certain point in time, and that's often closer to death,. And that is the challenge we face, because a palliative care approach is the responsibility or the skill of all healthcare providers. And in fact, I believe patients, families and communities have a role in helping each other in compassionate communities, etc. But you know, the traditional way that people think about when they get palliative care is when they see a palliative care specialist who might work in, say, a hospital or a cancer center in the supportive care unit, they could work in a hospice, which is a place where, you know, we know people die, or in, say, home care, there are home care, nurses and services that are specific for people who would benefit from a palliative approach, ie, they think they would die within six months or less. That's just how our system is set up. But the idea of a palliative care approach could be really from the diagnosis or at the beginning of a life changing illness. It's really another way of saying person centered or family centered care, the best care possible. And in a way, we kind of want that at every stage of our illness, not just say in our last six months of life. So I think there's confusion about the system because of the way we use the term, you know, we would use palliative as an adjective, like a palliative journey or a palliative diagnosis. But in fact, it's really a philosophy of care.
Misty Pratt
And so if it's a philosophy of care, where is the system falling short then if we're saying, okay, you know, we want all people who have been diagnosed with a chronic illness or a life limiting illness to receive or to be cared for within this philosophy, where are we falling short, then to get there?
Hsien Seow
Yeah, I wouldn't say it's falling short, but I would say that because, you know, our system is set up that when you need extra expertise you get sent to a specialist, that makes total sense. Our palliative care specialists, who've been nurse practitioners, social worker, they have extra training. They are extremely skilled at having very complex, delicate, tender conversations. However, these kinds of conversations happen all throughout an illness, and so I think where we have room for improvement is to infuse in all medical curriculum, not just doctors, but nursing and PSW, this idea of, I guess, person centered care. And this idea of, when you have serious, chronic progressive illness, which is a very high proportion of what a healthcare system serves, there are moments where we need to invite people to understand the big picture of the illness and that there's going to be changes. So I think the opportunities are for education at all levels, and I think we are challenged because we just don't have enough specialists with palliative care expertise to serve the need. And so actually, we did an ICES study where we actually looked at the number of palliative care specialists in the community, in family medicine, there's 13,000 family doctors in Ontario, and the number of family physicians who actually did palliative care billings, more than 10% of the time, was like 256.
Misty Pratt
Wow
Hsien Seow
256, in Ontario, and only half of those people were working full time. So, you know, some of the people are, you know, are have a part time clinic, or one day a week, that kind of thing. So if you really think about how rare, or how uncommon it is to meet someone with this expertise, and that is why, I don't want to say we're rationing it, but that's why we, we save the most complex cases for people with palliative care expertise. But actually, not everybody needs a specialist to manage these kinds of questions about- what's important to you? How can we support you in your home? How can you know we make sure your family knows what's happening? What I have found is 90% of the needs are informational, and only you know, 10% are sort of medical.
Misty Pratt
And I guess, you know, being offered those fixes or treatments, the main focus is on the medical side of things. So if I have a doctor who's focused on all of those things 90% of the time, and then we don't talk about the progression, or we don't talk about where things are going. Sheli, maybe I could bring you into the conversation, then I know we were chatting a bit before we started recording about your work and the fact that you weren't even aware that some of the services were available for the population that you worked with.
Sheli O'Connor
For sure, when I was doing my work in the healthcare system, I had no idea I was like everybody else, last three months of life, maybe you refer them for those services. But it's, it's quite an eye opening thing to see how much is there. In the 10 years of hospice, the number of times people have said to me at the end of the you know, when the person has come into the hospice, they are in the last stages of dying, and they'll say, "I wish we'd known about you sooner. I wish we could have done..." and we get healthcare people calling us on a Friday with a referral, and the person dies on the Monday. That's, it's just really sad that that's happening. So back to Hsien's point. We need to educate the public. The biggest gap I see is the knowledge piece. People don't know what they don't know, and so they go into these meetings with their doctors trying to get information or trying to understand what's happening. They're stressed, they're panicked. And we're also dealing with the population. Baby boomers- we want to be in control in our life and make our own decisions. So we get frustrated, we get angry. It just it's not a great setup, and it's not either or, it's together. The healthcare system and the community, we have to work together.
Misty Pratt
And so what have you seen in terms of people telling you what that feels like to get to the end and go "I wish somebody had told me all of this", like, what are the consequences of that for both the person dying and for their caregivers?
Sheli O'Connor
I would say guilt, regret, sadness and you can't fix it. You know, once it's done, it's done, and I think that that's so many families feel that they've let their their family, their their loved one down by not knowing this stuff sooner. The person themselves for not sharing, you know Hsien, talked about the how are we supposed to make the care centered on you if you don't tell us what it is that you need? And people are- I think you mentioned it. They're tender conversations, but we see them as scary, difficult, hard conversations, so we avoid them. In my work, I would say there is, for sure, an opportunity in the community. They want to know this, but they don't know what they don't know. So
Misty Pratt
I was just thinking that- they don't know what they don't know.
Sheli O'Connor
So we did an advanced care planning project for three years, and we, we looked at three sectors. We worked with, the healthcare system, community professionals, like estate planners, lawyers, whatever, and then the public. By far the public was the group that had the appetite had the interest. The healthcare system was so difficult. I think one of you mentioned it's so hard to create any kind of change in the system, and so it was really locked down, whereas the public, they were eager, and that's why Hsien's and Sammy's work is so exciting, because it's giving people what they need in terms of have a voice for themselves and to ask the questions that need to be asked from the beginning of their journey to the end.
Misty Pratt
And Hsien, I think you talked about that in the book, that you had that turning point of wondering, "is my research and what I do making a difference?" So I wondered if you could talk to us about that turning point for you and how then that led you down this path to work more with the public.
Hsien Seow
You know, I think it's the recognition that change can happen from the top down. And so a lot of the ICES research, and the colleagues that I work with at ICES, we're doing, like, policy research, right? We're doing evidence informed policy research, trying to look at, you know, home care utilization and ED avoidance and death in homes. You know, how can we support long term care? All of these things that I think are extremely important from a policy level, and that's really, in a way, top down. But what I think I realized partway through is it's, it's such a macro tool, and it takes a very long time to see those changes at the bedside. And what I was seeing, you know, in the cancer center that I, my office is in, is that, you know, patients, like what Sheli's saying in the community, saying "I wish I had known that sooner." And the real kicker for me is, you know, I spent my whole career doing palliative care research, showing the benefits of it, and in fact, the benefits of early palliative care. And when I would talk to patients and families, say you know, "we know palliative care is beneficial, here are all the studies," they would say, "no, thank you," because what they were hearing was, we're giving up on you sooner. You're taking away any chance of treatment. And we're very lucky in Canada that we are able to receive palliative care services at the same time as getting curative treatment. And in places like the US, you have to choose at some point you know one or the other, and you give up going to emergency department, et cetera. We can have both at the same time. And so really, there isn't a need to ration. We should be able to offer this concurrently at the moment of diagnosis of, say, an incurable cancer, which is what the guidelines say. And yet, that's not happening in practice. Half of Canadians get palliative care, and almost 40% of those people get it in the last, like 18 days. So we're getting it very, very late, this palliative care expertise. So all that led me to say, what could we do at the front lines? And I realized, just like all good research requires interdisciplinary lenses. It's really a communication, marketing, branding in a way, and we had to do qualitative research with patients, families and deconstruct what did we mean by a palliative care approach? It was even, you know, to this day, as I explain it, it's complicated, and if I couldn't explain it in you know, five words, we were going to lose the public, and we need public. So what we realized is we could deconstruct what we meant. What are the actions of an early palliative care approach? What does that actually mean? And we we narrowed it down to these seven keys, and that led us to sort of start this social movement, because, like, for example, one of the keys is called zooming out. What we're actually doing in palliative care is helping people see the big picture of their illness and understand the context of where they are and where they're going, and are they in the middle or late or end stage, and just what milestones to look for. We can do that for many, many, many diseases. Even if we don't know the timeline exactly for every person, we definitely know the storyline, and that information is very helpful. So again, empowering people. So, anyways, we started this, we call it a social movement, because it's really just information we're giving away and it belongs to the people. And I think a more active patient and family actually is a benefit to healthcare providers and the system, because now we can actually tailor care and make choices that fit them, but also not do things that are unnecessary or unwanted.
Sheli O'Connor
The whole passionate communities movement, and the kind of the 95% rule that Allan Kellehear has come up with about the fact that really, when you are ill you spend less than he says, 95% of your time you spend outside of the healthcare system. But I'm gonna say, okay, so you spend less than 10% of your time in front of your healthcare provider, you are with family, friends, neighbors, colleagues, and maybe, maybe not, maybe you're alone. That group needs to have the same information to be able to support people, and we haven't focused there, not enough. I'm not trying to discredit the healthcare system. It's complicated, but what I find is that trying to make that change, trying to introduce advanced care planning, could you have advanced care planning conversations with your patients? It's an awkward conversation kind of piece, so we have, that's why we need both. We need to be working with everybody.
Hsien Seow
Yeah, and another way of saying what, what I realized in the last 10 years was all the research and education that we have been targeting towards healthcare providers, you know there's tons of energy in healthcare provider education. We really don't spend very much time of thinking of patients and families and what information we have. So in a way, we had to take all our knowledge that we've been packaging for providers of what is an early palliative care approach. What is their role in it and making it digestible, acceptable to the public. And that's where this, the Waiting Room Revolution, came to and we are now finally at a point where we have linked it back to providers. And it is research, in a way, because I think we can research the impact of helping people to get information, their informational needs met early, and what are the long term impacts on patient reported outcomes, and how does that help the health system? I think it was so important to to recognize there are two parts of this. There's bottom up and middle out and not just top down. And I think if we want to see real change, and it, particularly change in how people experience living with a life changing illness, there's lots of opportunities.
Misty Pratt
It sounds like palliative care has a reputation issue that if I'm imagining as someone who's say, caring for a parent, and you know, things are getting worse, and I imagine, okay, palliative care is going to happen at the very end, when things we know for sure, there's nothing left to try. But if we can shift that a little bit and let people know it's so much more expansive than that. So Sheli, you know, you have spent years trying to shift this, this view of death and dying and grief, but also hope in life, right? So what do you see as the biggest barriers there to our understanding, to that reputation.
Sheli O'Connor
I think for sure the lack of knowledge. But I, as I said before, people don't know what they don't know. But I think the stigma associated with the term palliative is pervasive, and it's it's really a hard nut to crack. It really, we can get people into a room, we can get them talking, but get them doing anything, action wise, thats "nice to know but thank you very much. I don't need that yet." I don't, you know, read an article once that said palliative care is kind of like the umbrella, not the rain, and if we could introduce it and have it be part of normal like the normal conversations and care from the beginning, instead of it making it this thing at the end. It's my own personal thing. I really hate the word palliative, because I don't think it's a public, friendly term, and I don't think, people can't get their heads around it, so it's just stays negative in a lot of people's minds. So we really need- Hsien did a great job of describing it, and it really was about person centered care.
Misty Pratt
Yeah, it was really interesting to read the stories of people in the book, about the families putting sometimes that pressure on to fight harder, right? Like, especially when it comes to something like, let's say cancer, for example, there's this whole mythology of fighting cancer, that it's a war and a battle, and when we lose, we've it's almost a sense of like we haven't tried hard enough, or something like that. So it was really interesting to hear those stories that you know, sometimes it's not even coming from the patient themselves. It could be everyone around them rallying and wanting them to keep going and and sometimes the person inside is saying, "Well, I'm good to let go right now."
Hsien Seow
Yeah. I mean, in our book we, I think we used like the Alex Trebek quote, which people may be familiar, right? He's the old host of jeopardy, and he had stage four pancreatic cancer, and he was pretty public about his battle, but he wrote something on Twitter saying, sort of, you know, because I have so many fans praying for me, you know, I'm going to keep fighting, you know, and you could, in those, you know, that 140 characters you could see in his own mind, he understood there was changes, but he didn't want to let all the people praying for him down. And so I think that is, I kind of agree with Sheli like, you know, we say we want to meet people where we're at. We want to present evidence that's appropriate to them. And in this case, we're trying to offer a service that we know is beneficial. It saves the system money. It is better for families. It's better for patients, because they get the care they want, they feel better, they have less symptoms, and yet they don't want it. So there's a big mismatch here. And so even in our book, I guess we had to realize that we're not against the term palliative care. I'm a palliative care research chair, but when we go to the public, especially when we're meeting them early in an illness, or earlier in an illness, when there's a lot of uncertainty, people want to feel hope. That was our hardest challenge. Is to rethink of palliative care, how could we make it hopeful? And so we you know what we realized, we keep trying to teach people the definition of this term, but we should just use the language that they want. What they actually want is to have the best care possible. They want to have more choice and control. They want to be activated or or to know, and, you know, to be as informed as they can. That is what palliative care approach does. And so we had to come up with these metaphors. Our book has seven metaphors, these seven keys and palliative care is really walking two roads. It's helping people hope for the best and plan for the rest. And you know, it's so simple now when we say it, but it took us a long time to come up with that, because people often say, hope for the best and plan for the worst. I mean, you say that worst case, best case, people are like, "oh no, I don't want to hear the worst case." So they shut down. But when we said, hope for the best plan for the rest, the opportunity to engage in a discussion and invite them into a conversation opened up and then we could explore what that meant for them. Not everybody wants to go all the way to the end. They just want to plan for the next three steps, because we do want the same thing. We want to support them as best they can. They want to be as supported as they can, and they want to have as much choice and control. So there was alignment there. And so language really matters. No surprise. You know, in our research, we spent a lot of time thinking about our messaging for different audiences, and in this case, I think we should use the word dying and death and and palliative, but we don't have to do that right from the start, and it doesn't mean we can't offer or they can't engage in it in their own way, with different language and metaphors.
Misty Pratt
And out of those seven keys, was there one that really stands out to you, as I know they're all important, but is there one that you would say, "if you're going to do anything, do this first?"
Hsien Seow
Well, I think 'walk two roads' is really the beginning, because when you can walk two roads, what you're doing is hoping for the best and playing for rest. It was so important, it became the title of our book, and it opens the door for the possibility of talking about the future, because otherwise you're stuck in this unrealistic hope, the toxic positivity, you know, and it kind of prevents everyone else from thinking about the what ifs, but that is what palliative care is doing, is helping you navigate the uncertainty and as things change, even slowly, sometimes, you know, largely we have to adapt, and if we it's when we don't plan ahead, that's why advanced care planning, which Sheli has done many workshops, is so important.
Sheli O'Connor
I like the 'know your style' one, when I read the book, I sat down with my husband, and it was really, we really learned a lot about each other in terms of how we would handle our own healthcare journey and what we needed from the other person in order to be able to navigate together. It was, I mean, they're all great, but that one really struck me. Because you don't think about that stuff, you don't really have those conversations, and it's the same with advanced care planning. People know it's a good idea. You know oh yeah, they had to decide on substitute decision makers, but they don't want to have the conversations. They put them off and put them off and put them off. So you might have somebody who's going to be speak for you, but they have no idea what you want.
Misty Pratt
So what's the advice you would give to family members who are trying to broach that subject, the advanced care planning, trying to think, "oh, I need to, I need to bring this up." How do we do it?
Sheli O'Connor
What we've found is people get the first part. They understand the legal especially- baby boomers, worrying about, you know, all of their their situation. But they to do this, decide on a substitute decision maker doesn't seem to be the hard part. Once they understand that if they don't decide, the government will do it for them. So that's a very practical thing. They get that right away. But then we come to these conversations, which Hsien referred to as tender conversations. Well, most people see them as, oh, I have to- first of all, you have to think about what's important to you, which is values and whatever else, what brings quality to your life? Well, those are kind of heavy topics that people are busy with their lives that they don't get to. So that part has always been the challenge to try and get people to that next point, because we've gone back to people three months later, and they've they've done none of that conversation part.
Hsien Seow
I really wish we spent a lot of time saying now, since you're getting information and you're living this illness, let's get you all the information and invite as many people into understanding the big picture of your illness, who you are, what you want, while you can speak for yourself, so that we live you know, the majority of that time being who you are and being in charge of your journey. And if in your journey, there's a point where you aren't able to speak for yourself, and that doesn't happen for everyone, then you know they will, the people you've brought along will know, will have a better idea. They can use all that Intel of how you've lived your life and how you've role modeled how you want to walk that journey. I think that makes more sense for people. This is it's almost less about the other person. It's more about making it clear for you and everyone around you of how you want to walk this journey. That is, I think that's a game changer, in a way, for me, you know, it's what we've seen and yeah, and it's not talking about yeah, these specific situations. It's really about the whole, you know, yeah, the whole journey and what's important to you. That's what really drives- I think people are more willing to talk about things they care about, rather than what would you want happening in xx situation?
Misty Pratt
Yeah, values based. And Sheli. I just want to quote you here that you said, "if it doesn't happen in the community, it doesn't happen." So I would love your perspective. Okay, what, what then here should the community driven approach be to hospice or to palliative care?
Sheli O'Connor
We need to be focusing and funding things so that we can get the public involved. And we at hospice, we have, we created a volunteer team of we call them ambassadors, that go out and do presentations. And it's not not just that they're doing presentations, it's that they're bringing their own experiences to healers in the community, rather than some professional trying to tell them how things should be. So that has to happen in the community piece is really about the community needs to be part of this. Not having things done to them, but being part of what gets planned and with the system. And they can't do without the information, which brings us back to the education, but just looking for ways to engage in the community. So we've done a lot of things in addition to the education, the presentation stuff, but we we've had, we've involved the art world, and we've had art exhibits and people bringing in paintings and people who make urns and videos that people have created and paintings that people have created. Because if you can draw people in emotionally, rather than just giving them a PowerPoint and an opportunity to talk about what they're seeing, that then there is more momentum. And I, we did a session called "Know Now", where we had all of these different groups, spoken word artists, all kinds of artists. And there was a funeral planner in the group that had been on one of our steering committees, and he had always kind of said to me, no, we're not, we don't need to deal with that stuff, because that we deal with this part afterwards. And I ran into him as he was leaving the exhibit, and he was overwhelmed. He was going back to his office the next morning to meet with his staff, because the whole lens on how you look at dying and death had turned for him by being part of this on an emotional lens. So it was a real eye opener for us, too, to keep pushing. That's why I think the community is so important. It's key.
Misty Pratt
Yeah, so I'd love to hear how we then, how do we bridge to that? How do we, you know, take this incredible work that's happening in the community and bridge it with what the work that is happening at the health system level?
Hsien Seow
I think you know it's a challenge, right? Because you know that the challenge is, as a health system, we have to be stewards of our dollars. We have resources, and we need to be efficient with them. And in a way, you know, when we think of our healthcare workforce, they are, I hate to say it, but sort of widgets along this conveyor belt. And they are sort of, you know, they have to create outputs. And yet, when we think about healthcare, which is, you know, the most, one of our most important, treasured Canadian values, right? It's as Sheli saying, it's about community. It's about people. It's about seeing people as you know, what's important to them, and that includes the healthcare workforce too. Healthcare providers are humans too, who want to have job satisfaction and feel like their work is rewarding. And so there's a tension there between efficiency and outputs and doing the right thing, having the time to ask the questions, investing in, you know, the time to have these tender conversations, or at least letting them know these are important. And that is a guess, I think the partnership where community can fit in, because I'm not sure, you know, our surgeons are the people who should be having these more tender conversations. I think they need to say, these are, these are important questions that I want you to take this pamphlet home, or read this book or, or, you know, here's these handouts, and talk with your family first, and then come back and meet with our social worker, meet with our team, you know, etc. Or, let's talk about these three questions that are really important, because that's going to help me know what we do next with your surgery. So I think there is an opportunity, and I think the risk is if we don't recognize that our system is made up of people and how, we we are going to burn them out. I mean, they're already burnt out. There will be, you know, consequences of that, and we're seeing some of that, you know. And I do think some of the pressures on the system is because patients and families, they don't know what they don't know. If they could find ways to get this information, like, say, what is the big picture of my illness? Where am I at what could I do to prepare for what's ahead? They will not feel like it's such a crisis. They will already be ready. And yes, some of that means the recognition that a publicly funded health system cannot do it all, but at least tell me what I can get from it, and then I can make informed choices about what does that mean for us? But it's when we avoid talking about it, and then a crisis comes, and now we really are, we're in a bind. That is the challenge. We didn't have time to set up the things in place, whether it's getting in the supports in the home or the, you know, the ramp or the grab bars, etc, to prevent things that could have happened, or start getting a plan in place to be like, if this is what's going to look like, then maybe I would make a different choice and start to plan for that. I think they're connected. I mean, it's not, you know, I think there are real challenges about funding and wait times, etc, but there are things that can be done. And I think it when patients and families, and I keep saying, because I think it's when you get that a diagnosis that's life changing, that's when it's all very real before that, you know, you're healthy. We can think about, you know, what might happen. It's sort of, you know, a nice to know. But when you are living it, your life changes in an instant. Everyone says your worst nightmare comes true, etc. Everybody's changes and and often the whole family unit comes along, but everybody gets activated, you know? And so this is where we have an opportunity, is what we found for people, they're very ready. They are the most motivated to get the best information. That's why they're on Google. They want the most information, the best information, so they can be the most informed and have the most choice. As healthcare providers, we feel it's our job, and only our job, as the system to provide this information. But community is ready. The internet is ready, you know, like, and actually peer support these disease organizations, survivors, caregivers, family members. They're ready to support, and they've always been and so I think we just need to connect these two more and, and just recognize that there are a lot of informational needs. The informational needs part, I think is untapped. And, you know, we can move that ball a lot forward with very little resources. And yes, of course, more advanced technologies and treatments that's going to require, you know, a health system involved, but, but that isn't what actually most people want. You know, when they progress in their illness, they're like, we've done all we can medically, and now what I want is my family. I want support like that isn't what most people say is most important to them is to have, you know, the most time possible with the poorest quality of life. That's not often the case. It's really the opposite. People make choices of of if I had limited time, I would want family, nature, my pets, etc. So I think we we can lean into that. And as providers, we're so easy for us to be "well, there's another treatment we could try more." But we haven't stopped to say "is that, what are the trade offs? Is that really what you want? Is that going to get you what we want? And by the way, giving you all these treatments means you're going to have to come to the hospital three times a week in your last few months of life. Is that how you want to use your time?"
Sheli O'Connor
I totally agree with that. I think that the it's apparent it's you know you I think it works, system works better if you're asking the right questions of your doctor, rather than sitting there having him try and figure out what he needs to do and where he needs to put you. And yes, sir, yes, sir, and then being upset with them because it hasn't worked out. Whereas if we give them the right information and the questions, like you do with your books, then that gives a more effective system when you go into that doctor's office or when you go to see that healthcare worker, you're both on the same page. That's where we need to get.
Misty Pratt
So Hsien, you're just going back to we've, we've talked a lot about the systems level things that need to be done, but for ICES and the data we hold, what, what do we need to be doing?
Hsien Seow
Yeah, I mean, we have an amazing group of researchers who are looking at, you know, palliative care and and the system efficiency in long term care and pharmaceuticals and home care, home and community and primary care, family doctors, etc. So there's tons of research. And we have an incredible group of researchers in cancer and heart disease, etc. I think the opportunities are in, you know, collecting different kinds of data, patient reported outcomes or experience measures. You know, a lot of our indicators at end of life are about where people died, how much emergency department use they had, and could it be avoided. I think that's important. But I also think sometimes the best care possible for certain conditions is to go to hospital or the emergency department like that isn't what people say they want the most. What they want are or other things is to be with family, etc. So I think, I think there's an opportunity to maybe collect, maybe that's through primary health care records, maybe that's through certain. Surveys from Stats Can, etc. I think there's a huge opportunity to look at caregivers, family impact, including after death, the, you know, the impacts and grief and bereavement etc, which, you know, I think we can be done with with some of our data, but maybe it needs to be linked up with Stats Can and and tax records and stuff as an opportunity. But really, the other big opportunity is in some of our billing definitions, because a lot of our data, you know, we're only as good as our data, and a lot of the definitions of what is who's getting access to this is driven by, you know, whether they use some of these quote, unquote, palliative care billing codes. And for one thing, I mean, it's a very great place to start that we have these. We can use them. They're quite well used, but they do miss some of this because, you know, for example, family doctors in more rural areas, you know, they would say cradle to grave. This is a part of how they do medicine. And frankly, going sometimes their clinic is in a hospital. So when patients come to hospital, that is good medicine for them, but we aren't capturing that in our billing data, and so it would be great if we could- it doesn't have to be permanent, but it would be nice if we could. There's some innovative ways that we could do some surveying of what of what are the tasks you do? Like, are they having these tender conversations? Are they giving informational needs, or are they are they holding off? And that might help us understand where there are some opportunities. Because, for example, in that same study, 40% of family physicians never billed for palliative care ever in a year, meaning, I guess they weren't seeing anyone who died. I mean, that's just not, probably not possible. So, so there are opportunities there. I mean, that was several years ago, and so I think it would be nice to have a way that our data reflects this more modern definition of a palliative care approach. And it isn't just you know whether you use this billing code and if they were in their last three months of life. It would be nice if we could look at that, because I think there are opportunities in cardiology, nephrology, even in oncology, where we are waiting for this moment, where we should broach the subject of you know "this is progressing, what do we do now?" Where really we could have their patients and families say we I would love to have known that we could have walked that road earlier. And just think about the possibility, if this progresses, what would that look like, and what would we need to do to prepare now, because for many conditions that we know that will come one day. So anyway, that's some of the stuff we're doing with data. But I think all of this is to say that we do, you know, data research has a huge and administrative data has a huge role to play in telling the macro story. And I think a lot of what Sheli and I have been talking about is sort of the micro story of what's happening at the bedside and the opportunities there, and the two can work together because at the end of the day, when we activate patients and families to be more, you know, active in their journey and be in the front seat of their illness, they want the best information. When we're fortunate in Canada, they're looking for the most evidence, informed information, to go and make decisions together with the healthcare provider. So I think that's an opportunity.
Misty Pratt
Yes, we're always saying it's not just about the numbers, right? It's about the people behind the numbers and and the richest research we have is the type that's taking the numbers and also, as you said, that qualitative piece and looking at both together.
Sheli O'Connor
I agree with what Hsien's saying. I think people, yes, they want the knowledge, and in order to advocate, they want to know the research too. They want to know what people are finding out because they don't know themselves. I worked with a fellow who had he was a paramedic, and he had been very sick, and it wasn't until he came to Hsien's sessions and learned about the what you need, the seven keys, that he finally felt after he'd been apart of the healthcare system, he, you know, and he didn't know what to ask or what to talk about with his doctors to go back and get the kind of care that he wanted. So here's a guy who probably if, if there was research out there that, you know, he could grab on to, he or and had felt empowered to ask for it, it could have made a whole difference to the quality of his life as he went through the cancer.
Misty Pratt
Well, I sincerely hope today's episode is reaching a number of people out there who need to hear this information, and I appreciate you both being here. I hope we're doing our bit and changing changing the reputation of palliative care in Canada.
Hsien Seow
Thank you, Misty.
Sheli O'Connor
Yeah, thank you. It's very exciting to have the conversation.
Misty Pratt
Thank you both so much.
Misty Pratt
Thanks for joining me for this episode of In Our VoICES. Check out the show notes for links to research and any other information that we've referenced in this episode. A reminder that the opinions expressed in this podcast are not necessarily those of ICES. Please be sure to follow and rate us on your favorite podcast app. If you have feedback or questions about anything you've heard on In Our VoICES, please email us at communications@ices.on.ca and we will get back to you. All of us at ICES wish you strong data and good health.