Living with a serious illness (part one): A palliative approach to care

Transcript

Transcript

Megan Beahan: Welcome to Healthy Canadians, your space for nuanced conversations and expert insights into the health topics that matter to us all. I'm your host, Megan Beahan, and I'm joined by Alex Newman, co-host and producer.

Alex Newman: Hey Megan. How are you doing?

Megan: Good thanks. How are you?

Alex: Good. So, I've got a bit of a dark spoiler alert for you. We're all going to die... but not like today or anything!

Megan: Well, the good news is, I consider myself to be a death enthusiast.

Alex: Okay, maybe you want to explain that for our listeners a little bit! What do you mean?

Megan: I care a lot about end-of-life care and advanced care planning, and I'm also just really interested in how thinking about death impacts the way we live.

Alex: Okay, that's interesting, and this is kind of the perfect episode too. So today we're doing part one of a two-part series on palliative care and advanced care planning. So today we're kind of looking at it from 30,000 feet and we're going to try to define some terms around what is palliative care, what to expect if you're going through that phase of your life, where you might need it - serious illness or end-of-life care. And then in part two, we're going to talk more about the importance of planning ahead, having those tough conversations, thinking about what you might want when you're facing a serious illness or end-of-life.

Megan: And we're super lucky to have guests who are working in palliative care in Canada and are really passionate about the topic as advocates. We have Dr. Sammy Winemaker and Dr. Hsien Seow.

Alex: Also podcast hosts with The Waiting Room Revolution.

Megan: Lucky us!

Alex: So just a bit of housekeeping before we get started. Although Healthy Canadians is produced by Health Canada and the Public Health agency of Canada, what we discuss won't always reflect the official positions or policies of the Government of Canada. But that's okay. These are conversations, not news releases.

Megan: Okay, let's talk about palliative care!

Alex: Let's do it!

[Music]

Megan: Hello Sammy and Hsien. Thank you so much for joining today us on Healthy Canadians. I am going to admit that I am gonna have a bit of a fan girl moment right now if I may. I am just so enthusiastic about this topic of palliative care, and part of it is that I think you do such important work, and the other part is, I think you are great communicators. Fan of your podcast as well. So, thank you so much for being here.

Dr. Samantha Winemaker: Thank you. We're so excited to be on your podcast.

Dr. Hsien Seow: Thanks for having us.

Megan: So I would love to know, what is the Sammy and Hsien origin story? How did you meet? How did your work connect? Could you tell us a little bit about that?

Dr. Seow: Yeah, for sure. I am a palliative care researcher at McMaster University, and I spent my career doing research on trying to make the system better. How to make things more efficient. How to do education for clinicians. And we have both been doing, trying to change the system from within, and I think it's really important work. It's hard work because changing behavior is hard. Changing systems is hard. But many really great, well-intentioned providers and partners working on this. But the needle was not moving fast enough. And so, Sammy and I really got together because we were both really frustrated with how slowly things were going. Although in the right direction, but still very challenging.

Dr. Winemaker: He says frustrating. I say angry. [Laughter] We were angry. We kept seeing the same type of problematic scenarios at the end-of-life, over and over, and over again. Hsien in his research and myself in my clinical world. We also found ourselves, after years of being good acquaintances, on the same committee that was a regional committee responsible for looking at the delivery of palliative care. Hsien was the chair and I was one of the regional clinical leads. And we found ourselves having the meeting after the meeting, every meeting, where we would say: "Why can't things change? Why is everything so difficult? Why do we have to sell this so hard, this type of care?” And so, the more we had the meetings after the meetings, those turned into coffee meetings, and cappuccino meetings, and espresso meetings, and Hsien and I just fused, I think, ideas one day over coffee and it was really our light bulb moment.

Megan: Cool.

Dr. Seow: Yeah, and can I, if you want to hear the story behind the light bulb moment...

Megan: I definitely want to hear the light bulb moment story!

Dr. Seow: Yeah, I mean the truth is Sammy, I didn't drink coffee until I met Sammy! So, we had so many meetings that I...

Dr. Winemaker: Big mistake, big mistake!

Dr. Seow: Because now we're unstoppable, now I have too many cups! But what Sammy was helping me do a project about education. It was a national grant. We were doing education of clinicians - primary care clinician teams - trying to show them how to do a palliative approach to care. And that's what Sammy's really great at, because she works in people's homes. She talks in plain language with patients and families every day, and just, you know, just does it without, you know, all these labels. And so, we were trying to show other primary care providers how to do that. And the light bulb came up when she said: “Hsien, if we do it for all the primary care providers, we're still missing the most important group, which are patients and families”. And we realized right there that all the education and years, and all the programs, were really focused on providers, but there wasn't as much on educating the public. And patients and families are so thirsty for this knowledge, and so receptive, but we hadn't really thought of how all our materials and strategies would be applied there. And so that got us on a whole new chapter of our work which looked at how do we translate this thing called palliative care for everyday citizens, particularly patients and families facing a serious illness.

Megan: That's a great story. I think palliative care, and we'll jump into it a moment about, like, what is palliative care, and what does it look like. But when you were talking, it just kind of reminded me that, you know, palliative care is one of those things that, like, there's a whole team involved, right, and you have people and family that are involved in a healthcare scenario that is somewhat a little bit unique, right? Like I don't need to be as informed maybe going to the dentist. Maybe I do, maybe...

Alex: It’s good to be informed about the dentist too! I think too, though, a lot of people think about it as kind of an exclusively end-of-life thing, and kind of narrowly I think, and maybe there's something you can speak to about that, like looking at it from more, I guess, of a holistic kind of view, or like a broader sense of palliative care.

Dr. Winemaker: One of the greatest challenges I think over my 20-year career has been the definition or the perception of palliative care. It is thrown around as a word in so many different ways as a service as a specialty as a weird point in time and a label as a philosophy synonymous with hospice synonymous with end-of-life care and so it's no wonder that people are confused about what is palliative care, oh and I forgot to say it's also an approach and a philosophy of care don't know if I said that anyway, so it's no wonder people are confused because when people talk about it we don't know what the person speaking the word is intending and the person hearing the word is interpreting and so we can have these filters in between that start us off on the wrong foot so palliative care it at its core is a philosophy of care it is an approach to care for people with a progressive potentially life-limiting illness and it's meant to be adopted by every health care provider as a mandatory skill that is integrated into just the natural way they provide good person-centered care to people from the beginning of a diagnosis right until the end never really having to label anyone palliative just knowing that as their illness ebbs and flows that the health care provider can also ebb and flow and direct and engage the care in the most appropriate way for the place where the patients at in their illness Journey so that all sounds very complicated but is this beautiful magical care that honors a whole person holistic care focusing on quality of life whatever that means to the patient and  acknowledges mortality over time.

Megan: And would you say that's sort of like the future of palliative care which is really a palliative approach?

Dr. Winemaker: Yes, right, yeah you caught me, Megan. It is the ideal way we all speak and understand palliative care but in today's health care system that's not the interpretation of palliative care. It's usually end-of-life care. It signals a certain type of service and specialty team, like the one that I'm on in the community, and oftentimes it's used as a label, like you're “palliative” now. You weren't yesterday, but today you are. Or it's spoken about when there's this perception that there's nothing more we can do for you, so you know, we have to move you on to the grim reaper team.

[Laughter]

Megan: You know what Alex said about that sort of narrow focus or narrow idea of what people think... I think especially if you haven't gone through some sort of palliative experience with a loved one, you might be imagining, like, a very specific bedside end-of-life sort of scenario. Maybe you could give us a couple of examples of a palliative approach that you see, sort of like day-to-day, and how that's a bit different than maybe what we would instinctively imagine.

Dr. Winemaker: Yeah, I mean, referrals come to me late in the game so, admittedly, I wish I could give you stories from the beginning that I've been deeply involved in. But this is the problem: I'm usually enlisted late, when people typically have months left to live. And when I trained, I thought that I was going to be an expert symptomatologist, that I was going - and yes I have those skills - but the truth is, when I find myself in people's homes, that might be the reason why I've been invited to the home for, let's say, a pain crisis, or nausea, or insomnia, and I'm invited because of symptoms. But when I get there, whether I meet the patient and family in the kitchen, the living room, the bedroom - wherever I meet them - when we unpack the physical symptoms, it isn't a surprise when we find that underneath what's driving and amplifying the symptoms is really fear and anxiety and the mystery of feeling lost and unrecognizable. That people feel scared and unmoored and out of control, and so, to be honest, that's what I specialize in. All of those things. So, a lot of what I do is information sharing and asking people how much do you understand about your illness? Where you've come from in your illness. Where you're at now, and does your mind ever wander into the future? And how much do you understand about from here forward? And we talk, and talk, and talk about all of that. I always ask people: Is it okay if I speak openly and frankly about your situation? And most of the time people say: Are you kidding? Of course, what do you mean? Have people not been speaking openly and frankly this whole time, and suddenly you are? And that's not the intention, but people do want to be invited into knowing more about their illness, and that's a lot of what I do.

Dr. Seow: Yeah and that's really, you know, what Sammy's describing, you know, what she does in the home, you know, every single day is, you know, the light bulb is recognizing that those conversations don't need to be reserved only by a Sammy Winemaker or a palliative care specialist near the end-of-life. This idea of being invited to talk about what are you hoping for? What do we need to plan for? Or making decisions that represent you. Those are things that people wish that they could do right from the beginning of a diagnosis. And so the myths about palliative care, that it is a thing that, you know, only specialists can do. People with extra training when, yes, there are obviously expertise that, you know, a person with palliative care training has. But all health care providers are able to talk about the natural history of different conditions, that it's only symptom management. But you can hear how there's a lot of information about planning ahead and bringing forth, seeing the whole person care and what's important to them and their family. And that it's not only an end-of-life, like this beautiful whole person care should be something that people get right from - that can get right from the beginning of a life-changing diagnosis and that's what we're really trying to do is this idea of early palliative approach to care. What are the things that providers can do - the system can do? But what can patients and families do to get that care? Whether you want to use the “p word” or not.

Megan: Yes, and we're going to get into, like, what can you do, and how can you can be part of a team in a moment. But I think for someone who's not working in a health care system. I think people would feel surprised to hear that, it's surprising to hear that there, you know, that direct open communication wouldn't have happened, or that someone's in an end-of-life scenario and it feels like conversations are maybe even happening a bit too late. Why does that happen, and why isn't it easier or more open?

Dr. Winemaker: Well, there's multiple layers there. I think, you know, if we peel back the layers, really underneath is: We're all human, and as humans we tend to be: "death denying”. Okay so that's the first layer. And then let's leap forward to, you know, the training of health care providers, and the fact that there are still major gaps in our training because of this “death denying, I can fix everything, there's a treatment for all”, you know, if you don't cure something, you're failing. This is the kind of health care culture we are living in, so, you know, we get, you know, in medical school you all have to do a rotation in obstetrics. All of us have to deliver a certain number of babies or you can't graduate. But there is no mandatory curriculum across Canada and for many of the medical schools in the US as well and other countries, mandatory curriculum in palliative care. Yet every single doctor and nurse is likely to have to care for someone with a life-changing, progressive illness, so when people graduate, they graduate thinking they don't do “it” - palliative care - because they weren't trained to do “it”. And “it”- palliative care - is done by a specialist. And so these are some of the some of the reasons. But it's not intentional that health care providers neglect to have open honest, truthful, realistic conversations. They just get very busy in the acute day-to-day weeds or trees of the illness. You know, action-oriented things like ordering tests and interventions, and interpreting the results of those things, and sharing that information quite readily with patients and families. But what they're not doing is sharing the meaning behind it. What is the meaning behind the fact that you found that in my blood work or that CAT scan? And how do I connect that with the big picture of my illness? So, they're busy doing lots of good, amazing work but there's this big chunk missing.

Dr. Seow: Yeah, and connected to that, in another way of saying, you know, all of what Sammy is saying is that dying has become very medicalized and we have lost the social, community aspects of this natural part of life, that we, you know, medicine has done some amazing things to expand our life expectancy, but it can't prolong it forever. But it has become hidden in hospitals where it used to be in homes, and I think because of that people are scared to - it's the thing we hear the most actually - people are scared to entertain the idea of what does it look like if this treatment doesn't work? Because we hear about, oh some new medicine and some new treatment, and that is great, but what would it look like when/if that doesn't work? And they're scared to entertain that idea, so they stay on this road of hope. Hoping for the best. They can fight it. They're going to beat it. You’ve got to stay positive. And they miss the idea that as humans, that you can hope for the best and plan for the rest. These two things can coexist and in fact, by having realistic information to hope for and plan for, it actually can expand hope. Hope can evolve and be stronger, but it needs to be grounded in truthful information. And so, I think the main reason that we're so scared to talk about it is because we're scared that if we think about what that might look like, we're giving up on the idea that we want to live.

Alex: It's a, yeah, it's a scary thing to think about for me for sure. But I had the experience once of being in the room when someone passed away. And it wasn't anything like I thought it was going to be. It was completely - like we build it up in our heads of being this monumental thing that happens, and usually the feeling of like a sudden or traumatic thing. But it's a lot - as I saw it anyways in that experience - it was slower. It was calmer. It was emotional, certainly, but it wasn't traumatic. It was, it was way different than I thought it would be, and that kind of changed my thinking a little bit around it. I think, too, it made it a bit easier for me to talk to people about it, like my parents who are aging and stuff as well...

Megan: Yeah for sure. And I think, like, when we met, when I introduced myself to you, I called myself a death enthusiast, which is, I think, throws people off. It's a weird thing to say.

Alex: That's what you mean by it!

Megan: I'm not enthusiastic about dying. Actually, it's quite the opposite. And thinking about my own death, you know, motivates me to, like, live a fuller life right, and I love the concept you, Sammy and Hsien, use. This concept of mortality awareness. Could you talk a little bit about that? That kind of talks about, like, the practical side, and the hopeful side. What does that mean?

Dr. Winemaker: Yeah, well, I mean, when I think of mortality awareness, it's nothing dramatic. I wouldn't say it's equal to being a death enthusiast.

Megan: Would you say that's like another level of like yeah...

Dr. Winemaker: Yeah, I think a death enthusiast is something completely, you know, up there! [Laughter] But having mortality awareness is really just: sometime at some point in your life that you became more cognizant of the fact that the human experience begins and it ends. Just like all other animals. There's not an animal that lives forever. And that can be a lesson you learn in your kindergarten class when the first goldfish, classroom goldfish, dies and the teacher bravely, you know, explains what happened to Goldie instead of rushing out on lunch hour and getting another goldfish and replacing Goldie with another Goldie and nothing ever happened. And, you know, and as the years go by, you just seeing your grandparents get older, and how your family deals with the overtness of, you know, Grandpa's gone now and Grandma's gone too. Maybe other people passing in your life or movies or on TV. Whatever it is. Mortality awareness is about the normal life cycle, and you don't think about it every day of your life consciously. It is in the subconscious. And it can be - for me it is - I would say I have a very high mortality awareness. But I don't walk around smelling the flowers like I'm going die one day and that is so on the forefront of my mind. I think I'll blow a wad of money. It's just that I feel a certain amount of peace in my life and, you know, I hope that I treasure every chapter of my life and it won't surprise me when one day I either get much older or I get some kind of illness that's not curable and that will be the illness that signals a very normal physiologic process that starts usually a long time before death happens. I don't want to die right now, and I'm not ready to die right now. I'd be pissed! [Laughter] but I know I will one day and that's that. It's nothing more dramatic than that.

Dr. Seow: I mean a lot of this idea of mortality awareness comes from, like, public health palliative care movement which is an international organization and in countries all over the world, but they've started things like, you know, we have health literacy, so they've had death literacy. And it is just this idea of helping people talk about it and be aware of their own mortality but normalizing ordinary dying, normalizing conversations that this is the natural cycle is important because it has ripple effects across all society, all ages. You know how we work, our workplace policies, how communities grieve, the supports we have in place, really... I mean, a lot of this idea of death literacy and a compassionate community is connected to this idea of how we want to support each other through death, dying, grief and loss.

Alex: Yeah, it's really interesting, too. I think like there's an element of it, too, where we accumulate these biases and thoughts about our conceptions about death and things that serious throughout our lives, and they kind of buildup. And I'm thinking about it. You mentioned people talking about it to kindergarteners. And my son's three and a half, and he's so matter of fact about it. The other day he just said to me: "Daddy, are you going to die one day?” He's getting curious about death. And I said” “Well, yeah. Hopefully not for a long time, but yes, one day. And he just said. point blank: “Am I going to get a new Daddy?” And I was like” “Well that's up to your mom but...”

Megan: Has he had a goldfish die yet?

Alex: Yeah, no he hasn't, and I mean it's very innocent, right. But it kind of makes me reflect on my own biases, and, like, how I've conceptualized it my whole life. And that contributes so much, I think, to how we talk about it. So, like, it's really important, I think, to talk to kids and younger people about it in a way that's open and not stigmatizing, I guess.

Megan: Absolutely, and I think, like, once you've had a family member that's close to you pass away – die. I'll say die. I'm not a big fan of using the word pass away. I think things can feel, you know, even more real, I guess. Or maybe there's a heightened sense of mortality awareness. I'm wondering if you can talk a little bit about, like, as a caregiver to a loved one, or a parent. What can that person's role be as part of, like, a palliative team? And I know that can vary hugely, but maybe you could give us an idea or some examples.

Dr. Seow: So I think the best way to think about this is actually the person with the illness, the patient and their family, their inner crew - whether it's a chosen family or blood related family - they are the team, and your health care providers are a part of your team. Because that's really personalized care. Where you're at the center and the people that you're interacting with are trying to figure out how to support you. How I think we should think about it - and the family has a critical role because they are on this journey too, right. In palliative care, the philosophy we think of the patient and the quote unquote family as one unit. They have the different experiences. But we need to think of how this illness impacts everyone. You know, so they have a critical role in understanding: What is this illness? What does it mean? What is the big picture of this illness? What are the stages, and things we need to prepare for, and what are the things they need to do, or not want to do, in those stages? And being as open and honest about that, so that they can make plans. Whether you're able to do those things, great. And if you're not, who can we get to fill that in? Do we have to put them in a home? Do we have to get some support, or hire people, or get community involvement? So they have a critical role in exactly the same way as the patient, because they really are living a parallel illness journey. And, in fact, they will have grief and bereavement after, and so they have a longer Journey.

Dr. Winemaker: The other important part of the family as the care team is that really when you look at it, they are the ones who help the person with the illness have a bespoke or customized illness experience. So when you are wrapped around by your family or your chosen family, they are the ones that ensure that what happens along the illness is nipped and tucked, and like I said, customized to who you are as a unique individual. Without family, and if the person takes a more backseat or passive role in their health care journey and lets the system - the health care system - just sort of blow them around wherever they want, that person at the end and throughout is going to feel depersonalized, more robotic, and begin to not recognize exactly who they are now with this illness. So that layer of family is critically important if you want to remain and come out the end feeling like you recognize yourself even though you have an illness that you might not be able to change.

Megan: And I think, like, what I'm hearing is clear communication is really important, and then also the family's playing a big role as a patient advocate, too, right?

Alex: And it really emphasizes the need to talk about it because, I mean, there's things I don't know about what my own parents would want, I think, if they have a serious illness or are at end-of-life.

Megan: Yeah, let's talk about it practically. Like, where's the best place to start to have that conversation, and when, right?

Dr. Winemaker: Right now. Let's do it!

[Laughter]

Voiceover: To be continued in part two.

[Music]

Megan: Thanks for tuning in to Healthy Canadians. If you're watching on YouTube, click the Like button and subscribe to stay up to date on all future episodes. Find us wherever you get your podcasts and leave us a review if you like what you heard. For more information on health topics that matter to you, visit canada.ca/health.

[Music]

Learn more

• Palliative care: Overview
• Palliative care can help improve quality of life
• Fact sheet: What to do when facing a serious illness: 3 sets of questions to ask your health care team
• The Waiting Room Revolution
• Canadian Directory of Hospice Palliative Care Services
• Infographic: Explore the full spectrum of palliative care
• Caregiving and palliative care resource list
• Advance care planning in Canada

Visit our Healthy Canadians podcast video gallery to browse through previous episodes.