Living with a serious illness (part two): Planning ahead and navigating tough conversations

Transcript

Transcript

[Healthy Canadians logo with pulse sound]

[Music]

Megan Beahen: 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 Beahen, and I'm joined by Alex Newman, co-host and producer.

Alex Newman: Hey Megan, how you doing?

Megan: Good, how are you?

Alex: Good. So, today we're doing part two of our two-part series on palliative care and advanced care planning. So, as you might have guessed by the order of those, today we're talking about advanced care planning. So, thinking ahead about what your wants and needs might be if you're facing serious illness or end of life, having those tough conversations with loved ones, and thinking things through early, you know, before you're facing a tough situation.

Megan: And we're joined again by Dr. Sammy Winemaker and Dr. Hsien Seow.

Alex: All right, so just a little 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: All right, let's talk about advanced care planning.

[Healthy Canadians logo with pulse sound]

[Music Stops]

Dr. Samantha Winemaker: If you- I remember trying to do this because I saw it done somewhere, you know, a bunch of healthcare professionals in the audience of some talk we were at and the person was doing a talk on advanced care planning and asked everyone in the audience, how many of you have... know who your, no, "how many of you have ever thought about your values and what you'd be willing to trade off, what's most important to you?" And you know, everyone put up their hand. Okay, fine. And then how many of you know who your proxy decision maker is or substitute decision maker, power of attorney? Half the people, you know, sat down. And then as the questions were asked...

[Laughter]

Dr. Winemaker: Very few healthcare providers were standing at the end, which just goes to show you that we do a really poor job at practicing what we preach in terms of really entertaining those conversations, but they're so important and should happen throughout life, even before you have any particular serious illness. When you watch a movie and something strikes you, you turn and speak to the person beside you about how that impacted you. What about that gelled with you or you grew antibodies with or, you know, so it's not- those conversations are not reserved for when you're in the middle of making a treatment. That's probably the worst time to start opening the dialogue. So, as early as possible.

Dr. Hsien Seow: Yeah, I think what, you know, our research and our conversations have shown is one of the best opportunities is to talk about what you would want, when it's happening to someone else.

Megan: That's good.

Dr. Seow: Or whether it's a movie, or, you know, you're going to a funeral of somebody, and then you can say, "Wow, would you have wanted that?" Or "What would you want if this is the situation? "And too often, we delay that when it when we think it's about us, but the best opening invitation is when it's in there's not so high stakes. And you can talk about, "Oh, that happened to, you know, so and so, what would you want? Is that what's interesting?" You know, "Would that be the choice you make?" And the reality is part of why this thing called advanced care planning is difficult to conceptualize. It has the same sort of issue as palliative care, people misunderstand it. I think they think that it is about a do not resuscitate form and a feeding tube form.

Megan: Yes.

Dr. Seow: You know, "Do you want to be on an iron lung?"

Megan: Yes.

Dr. Seow: But actually, advanced care planning is any kind of discussion that helps you understand who you are and what's important to you. So, anytime you're sharing that information about what you what you value, how you want to live your life with an illness, what you want, what you don't want. And then a small part of that is, "What are the decisions you want to make at end of life?" But really, the bigger ethos is what's important to you. And that is something that actually, I think people do want to talk about because once I understand that about you, that all the healthcare decisions and all the life decisions around that are connect to who you are as a person, and you know, how you want to be remembered or how you want to live as fully as you can for as long as you can.

Dr. Winemaker: I remember, my husband and I went to our lawyer to, I guess, update our will or whatever we were doing. And the lawyer wanted to do some extra stuff. So, he turned to my husband and said, "Okay, do you want to be resuscitated?" We were in our 40s. "Do you want a feeding tube? Do you want to be on a ventilator? Do you want..." and my husband quite easily said, "Nope, nope, nope, nope, nope, nope, nope, nope." And, you know, he didn't even have any condition. And so, I was sweating the whole time. He turned to me...

[Laughter]

Megan: You wanted to jump in so bad.

Dr. Winemaker: Yeah, I wanted to step in.

So, he turned to me and asked me the same questions. And I'm like, and I knew my husband was like, "Oh, please don't make this complicated". And, you know, I said, "Well, you know, honestly, it depends".

Megan: Right.

Dr. Winemaker: "Well, what about what about the machine?" It depends. "Oh, what about the feeding tube?" It depends. "What do you mean it depends?" Well, it would depend at the time what the situation was. And what's more important is that I tell you what I value and what I wouldn't be willing to trade off. Because then when I'm faced with any kind of healthcare decision in the future, it's not going to be whether or not I want a feeding tube or not, my husband will be able to say, whatever decision is, you know, on the table, "How is this going to impact the fact that it's most important for Sammy to be able to come home?" So, if a feeding tube allows her in this scenario to come home, or doesn't, then I would want it, or I wouldn't want it. So, you have to put these treatment decisions in context of the person's values, and it's the values that we want to get at.

Dr. Seow: I share something with my research hat on, because this has clarified this so clearly for me, and hopefully for people listening to, we think that an advanced care plan is actually an advanced directive, like we're making a decision for the future. But in fact, when that time comes, every medical decision, you need either the consent, and if you're not able to, your substitute decision maker.

So really, we should think about advanced care planning discussions as any conversation, you are either preparing for the future, a future decision, you're getting intel, like Sammy said, that's going to help you paint a picture to make the decision in the future, or you're making a decision right there and then. And if you're not sick, you're not making a decision right there and then. So, all you are doing is any conversation that is giving you intel to help you understand that person and what they may want if you're the substitute decision maker. So really, most of the time, these conversations are about preparing for the future.

Alex: Can that be about big things and small things too? Because I think we often think about how those are the big things, like the feeding tube...

Megan: Yeah.

Alex: Do not resuscitate, those are the things that come to mind. But I think it's also about like, "What do you want the room to look like? Who do you want to see in the weeks before?" Those kind of things.

Dr. Seow: To me, those are the big things, Alex.

[Laughter]

Dr. Seow: Those aren't the little things, "Who is important to you, who you love, what you want to be looking at, whether it's, the nature or trees or the water, or do you want to be in a hospital looking at the beeping lights?" Those are the big questions, actually.

Alex: Yeah.

Dr. Seow: It's not about these little medical decisions, which, you know, I'll have to make.

Dr. Winemaker: Okay, at the risk of being a contrarian, I would say that those are important discussions to have over life. But when it comes to advanced care planning, we really do stick to not the concrete things, but the values and beliefs and the things that are most important to you that can be contextualized later in life. Because, for example, if you say, "I really never want to be in a hospital." Well, Hsien, if you get in a car accident, you might want to be in a hospital. So, you can't- you don't want to set in stone things that in the future, if a decision needs to be made, that someone holds to them literally without putting them into the context at the time.

So, advanced care planning conversations are about wishes and values, beliefs, and what's most important to you. And they are drawn on in the future, when someone is needing to make a decision on your behalf, because you can't represent yourself. And those can be specific decisions at that time. But they remember all these things that you've told them in the past, your values, and then they can use them to help make a decision. So, they feel they're making a decision on your behalf, and not from their own bleeding heart.

But the other really important part of advanced care planning conversations, and the exercise of knowing who you are, and what's important to you, is that that alone helps you to come to the healthcare system, almost with a resume, or a terms of reference or a terms of engagement. So, if I know that it's really important to me to be able to communicate, then I'm going to make sure that I tell people that when I'm faced with a serious illness, that if this particular surgery will leave me without the ability to communicate, I've known my whole entire life, that this is really important to me. So, for me, it's a no-go. For someone else, the trade-off of being able to communicate might be okay for them, because they just value the length of life, or whatever it is. I'm rambling on now, but I think we get it.

Megan: No, that's great. I love the idea of taking these opportunities when they naturally come up to think about it as well. Those are opportunities to have conversations with someone, but it's also an opportunity for your own self to contemplate, right?

Dr. Winemaker: Right.

Megan: I feel it's a big ask to say to people listening, "I want you to prepare some time, put it aside with a journal, and meditate about, you know, what does your death look like?" Maybe that's for death enthusiasts.

Alex: It's an ongoing conversation.

Megan: But it's not for everybody. But yeah, having a conversation about it.

Alex: And it's got to be a years-long conversation.

Megan: Right.

Alex: I mean, it's a conversation that can change through different periods of your life, too, I would think, right? How I felt about death in my 20s is definitely different than how I feel now in my 40s.

Megan: Right. And you have to talk about it.

Dr. Winemaker: If we're a death-denying society and we can't even have decent mortality awareness, really, how do we expect people, when they're not ill at all, to start thinking about dying and death and being sick one day?

Megan: Right.

Dr. Winemaker: But what people can think about is, back to what Hsien was saying, "What's most important to you right now? What is something that you're not willing to give up about you? What defines you as a person? What do you want people to know about you?" People can answer these questions and contemplate those things easier than, "What do you want on your deathbed?".

[Laughter]

Megan: Yeah. What do you value? Not necessarily imagine your deathbed and what you need exactly in that moment.

Dr. Seow: Which means it's emphasizing the living part, not the dying part.

Megan: Yes.

Dr. Seow: And that's what I think people are drawn to, what we've found. And in many ways, why they're scared of this idea of palliative care. And so, what I hope they're hearing is, don't be scared of this philosophy of palliative care, because it's really the best way to get person-centered care, because it really emphasizes the living and what's important to you.

Megan: Maybe you could talk a little bit about the concept that we live, we die how we live. Did I say that right? We die how we live. You're the same person, right? You want the same stuff, same needs, same values, right?

Dr. Winemaker: That's right. I mean, what's that saying? Show me a boy and I'll give you the man. I think that's a saying, basically, by a certain age, we're pretty much- our personalities and coping mechanisms are pretty ingrained. And these traits don't typically change too much over time. So, you die as you live. If you have been someone who has been more introverted your entire life, you may not want, you know, later in life to be surrounded by all your neighbors coming in and out through a revolving door. It's just not your style. You die as you live. You know, conversely, if you're someone who talks it out all the time, you're a talk, talk, talk, talk, that's how you cope.

You know, when I failed a grade in school, I had to talk, talk, talk it out. Or when I, you know, got fired from a job, I had to talk. That was my coping mechanism. Talk, talk, talk it out. Well, guess what? In the future, when you're faced with a serious illness, you're going to need someone to talk, talk, talk, talk it out with. So, it's just this idea that don't be surprised your brother doesn't show up with the casserole. He never did. He didn't do those kinds of things.

[Laughter]

Dr. Winemaker: So, you know, you die as you live. Let's not be surprised by what we see in ourselves and in the people around us and get disappointed. Let's set reasonable expectations that we know ourselves and know each other so well that we won't set each other up for failure. I'm going to be a mess when I get to, you know, a scary point in my life. But once I talk, talk, talk, talk, talk it out and exhaust myself, I will land, and I will face things. That's the way I do it. But other people will do it differently. So, you know, I will remain me no matter what treatments are offered to me. And no matter how I decline over time, Sammy will remain Sammy for the most part.

Dr. Seow: Yeah. And I think why this concept of knowing yourself, know your style is so important is because oftentimes when people get diagnosed with an illness, they feel like they're losing their power, right? They can't control the illness. And so, you know, their life is now in some ways out of their control or how, you know, the length of their life may be. But what they do control is their understanding of who they are and how they're going to face it and those around them.

And in many ways, that knowledge is power because it will- you can start to anticipate if you sort of think ahead, "How is this going to play out?" You know, if the person is someone who is very indecisive, it's going to be very hard for them to make a treatment decision. So, they're going to need support. And you as the family, that will be your role. "How can we help them make a decision or they're just going to waver and sit on the fence?" And then meanwhile, you know, eight months have passed, and nodecision has been made. So, they're in limbo, for example. There's lots of these concepts of "How is this going to play out?" You know, if they don't, if they're the kind of people who are very private, well, this is probably how their illness is going to play out.

So, how do we respect that? And how can we support them but maintain their privacy? This is empowering information that's going to allow you to understand how your illness will play out, but what you can do to make it smoother and not get lost in this generic, you know, conveyor belt of a health care journey.

Dr. Winemaker: I almost clapped.

[Laughter]

Megan: That was so good. I want to pick up on a point that you said earlier, Sammy, and I think it also guides a lot of your work about, you know, "Why didn't anyone tell me sooner?" You know, Sammy, you've seen people in their homes, and people are maybe having these conversations a bit too late. I think that's kind of whatyou're trying to address, at least partly with your work. How do we get people to talk about it sooner? So, let's take Alex here. Alex is now motivated. He's thinking about advanced care planning, his mortality awareness just increased 100% even having this conversation. Where do you start? You know, is the best way to start is just having these informal conversations? Or are there tools or things or picking up the phone to call the lawyer? Like what's a practical way to start?

Dr. Winemaker: As a citizen?

Megan: Yeah, as someone.

Dr. Winemaker: Like Alex?

Megan: Yeah. A citizen like Alex.

Alex: "He's a model citizen".

Megan: Yeah. He's a model citizen.

Dr. Winemaker: Yeah, I mean, if you're starting to think about, you know, the normal life cycle, I would say, step one is to really think about, like we said already, "What floats your boat? Who am I? What's important to me?" And then you begin to invite people in your inner circle to talk about these things and begin to test it out with the people around you. You know, I've been thinking about something lately. I'm role modeling now.

Megan: I love it.

Dr. Winemaker: This is Alex. "I've been thinking about something lately...", he might say to his partner. "And I'd like to share what's on my mind. I just saw a movie, or I was just in this podcast recording with these two- three death enthusiasts..."

[Laughter]

Alex: You started a new term.

[Laughter]

Dr. Winemaker: Yeah, so I think it's it starts with just having informal discussions with your people. And then, you know, at the next opportunity, to begin to engage your healthcare system. So, if you are going to your family doctor or nurse practitioner, begin to bring yourself forward in those visits, and not just show up and just go with the flow. But you say, "You know, I've been doing a lot of thinking about life and, me. And I was wondering if you could chart somewhere in my chart, that I'm the kind of person who really wants to be spoken to very openly, and that I want to know as much information as possible, I prefer not to have things sugar coated, etc. So, you bring yourself forward in every healthcare, you know, opportunity. That's how it starts. I mean, are there tools? Sure. Our book, hope for the best plan for the rest.

Megan: Yes.

Dr. Winemaker: Seven keys to navigating a life changing diagnosis. So, that's one tool. Hsien, did you want to say something?

Dr. Seow: Yeah, I think, well, I was going to say for Alex, it would naturally come up, if you think about, you know, how he might care for his parents, or his grandparents...

Megan: Right.

Dr. Seow: If they're still around, and, or, you know, a neighbor that's, you know, that might need help. So, these things are- you might actually not need to consciously think about it, it might actually sort of be there already. "Do you have a plan if they're not well?" And not well can also mean, "Hey, they're getting slower, their memory is sort of fading, who's going to take care of them that now that they can't, you know, mow their own grass or shovel their snow". So, these are part of the natural aging process. They're very synonymous, how we age in place is also how we die well. But what we have found is the most motivating factor is once you get a diagnosis, when someone in your life gets a diagnosis, whatever that is. And the good news is most diagnoses, there's a lot of things, there is time, that's really our point. But at the moment of diagnosis, your life will change.

But use that time to not get sucked into the system to start planning and make take control and take charge. And using that time to start thinking about what resources are available in your local community. Is there a hospice society? Is there a disease organization and peer group support group? There's Canadian Virtual Hospice, there's the Canadian Hospice Palliative Care Association that have, you know, tools online, and websites, there are amazing community organizations that have navigators and volunteers, hospice volunteers everywhere across the country, are people who want to support people, not to help them die well, but to help them live well, and support them and their families.

So the sooner that people understand that their life is going to change, and their condition will change, that's when we can start preparing for what supports will I need not just getting beautiful care in the last days and weeks of life, but the whole time, which could be years, years and years for many people.

Dr. Winemaker: I would say for Alex also, I mean...

Alex: Getting lots of advice.

[Laughter]

Dr. Winemaker: Alex is the star, you know, when you become a parent, if you become a parent, it's also I think until your children become independent, in the back of your mind, there's always this looming, "Oh my goodness, what would happen if something happened to me as the parent". And you're constantly thinking, "Oh, we better take different flights, because what would happen if both of us were, you know, wiped out suddenly, and our kids have no..." So, I think that's another natural time where mortality awareness begins to percolate, because you feel very vulnerable, because you have children that you need to account for if something happened to you.

Alex: I'm currently there in my life. But I mean, it gets me thinking too about this symbiotic nature of the relationships. So, for me, mentioning having a child, that's a big motivator, probably the only motivating thing, honestly, that makes me think a lot about my own end of life, if it were to happen. And I think a big motivation is making it easier for them. So, I think that's part of why we got to have the conversations too, right? And I wonder, that's got to impact things like grief too, for family members, how you how you're managing your own experience, right? Maybe you could speak a bit to that.

Dr. Winemaker: Yeah. Well, I mean, the word grief sort of has a bad rep, I think the word palliative, like grief, who wants that?

Megan: I know, it sounds very dark and sad.

Dr. Winemaker: Yeah, doesn't it?

Megan: Yeah.

Dr. Winemaker: It sounds like the Grinch or something. But anyway, grief is actually an umbrella term. And it's really important and a very important construct that people go through when they're preparing for a loss. So, most people assume that grief happens at the point of death, and afterwards. And that's called bereavement. And it's a part of grieving. But grief, like hope, is a construct that begins and evolves over time when you have a serious illness.

So, when you get a diagnosis, you begin to grieve the loss of who you are as a healthy person, and the people around you begin to grieve that as well. And grieving is protective, because it begins to help you form a little bit of a steel shell around you to protect you for what's coming. So, for any anticipated loss that we're going to have in our life, we begin to acknowledge that we begin to grieve that that loss is coming, but that helps us to prepare for when it happens. And this is called anticipatory grief.

So, when people are in the know about what is going to happen along their serious illness journey, that there will be bus stops and milestones and tipping points, that they can begin to ready themselves for the next curveball. And that's anticipatory grief, so that when it does happen, for example, if I know one day, I'm not going to be able to swallow with this illness, that is going to freak me out, thinking about that, because I love eating. So, I will begin to contemplate what that's going to be like, I'm going to be upset about it, I'm going to be frustrated. But when I- as time goes on, I will begin to adjust to the idea of not being able to swallow and eat one day, so that when it comes, it's still not going to be a good experience.

But I have started contemplating it, the loss of my ability to swallow before that moment. And it's the same thing with dying, that when we have a serious illness, as Hsien said, most people don't up and die out of nowhere, like get struck by lightning, or in a car accident, they get a diagnosis that has a longer landing strip, whether it's months, or years, or a decade. And we can harness that period of time by understanding that time is limited.

And naturally, we begin to start grieving, same with our family. So, along the illness course, we are protecting ourselves and readying ourselves for losses, so that when the time comes, and death does come, we will be sad, there will be a moment of loss. And afterwards, we will be the bereaved and continue to grieve, but our grief will be softened, because it started a long time before. It's not a sudden ripping off of your heart, like sudden grief.

Alex: Well...

Megan: That was beautifully said. I love the practical nature, even of grief, right? And isn't grief just a representation of love, right? It's a loss and you've lost something that you loved, right? And so, something to be honored and respected as well, right?

Dr. Winemaker: Or you're anticipating the loss.

Megan: Right.

Dr. Winemaker: Yeah. And so, you begin to grieve the loss of something that was important to you.

Megan: And so, is that a big part of your clinical work? You said that when you treat patients, a lot of it is dealing with emotions. And so there are supports out there too, right, for people who are grieving?

Dr. Winemaker: Oh, yeah, there's lots of supports. I would say the first step is though, making sure that people have accurate information and realistic information so that they can start grieving and not be stuck in an unrealistic fantasy about where they're at in their life. So, step one is to align the mind and body, and everyone understand where things are at.

Okay, then the person begins to start grieving. And if they're struggling or if they want support through that, there's lots of support available through their family practice, through other healthcare providers, through the family practice. There's also, you know, faith groups, communities and churches and synagogues and even funeral homes and hospices offer grief counseling.

There's online counseling, there's private counseling, there's, you know, there's lots and lots of support around grief and tons of literature. The Canadian Virtual Hospice has lots of information on grief, different disease societies have information on grieving and bereavement as well. Hsien's waving, so I think he wants to contribute.

[Laughter]

Dr. Seow: Yeah, no, I think, especially with COVID and the grief has become a big issue and that the Canadian Grief Alliance, you know, has a whole bunch of organizations that contribute to this from all ages and all different diseases. So, and palliative care includes grief and bereavement, dying, loss, death and bereavement. So that's an important piece.

But I think, you know, coming back full circle to where we started our conversation, I think it is this idea, if you listen carefully, palliative care is not just something that's at the end of life and delivered by a specialist. It can- it ought to be something that all healthcare providers can provide, in the sense, at least the basics of it, because they all can talk about what is this disease for, what are the things you might be losing, what are the things you need, you can adjust for, prepare for. Those are things that all healthcare providers have knowledge about.

And these are things that all citizens, all patients and families can ask for, to get a palliative approach, even if it's not in a palliative care unit, or a hospice, or by a palliative care specialist, they can still be getting a palliative approach from everyone. And so, depending on where you are, there is access to good whole person care, because I know from our experience that has been the vast majority of healthcare providers chose this profession, because they want to help people. And they and they understand that, you know, sickness is a part of healthcare.

So, they want to see the person and do the right thing and patients and families can take a lead and talking about what's important to them, how they want information, how much they already know and want to know about the future. These kinds of clues, if you bring them forward, it helps you to get better care all throughout the whole journey.

Dr. Winemaker: Can I mention the flip side of losses?

Megan: You sure can.

Dr. Winemaker: Is that okay?

Megan: Of course.

Dr. Winemaker: Yeah. Because they're certainly very important, but you know, there are a lot of things that people gain in a serious illness as well, and during the dying phase of life. I was caring for a woman recently who said to me that she wants to live as long as possible and she's willing to take as many treatments as possible and trade off everything. And it's because she has, I will change the story a bit, three sons and she never in their entire life have expressed the love to her that they have expressed now that they know that she's in a more late stage of her illness. And you know, it's just one example of one some of the things that I see in my practice. Incredibly beautiful and important moments that wouldn't have happened.

Many people have said, "I've never felt so much love in my entire life. I am so great- feel such gratitude for...", you know, "... the Health Care System" sometimes they say or, "you know my neighbors or I'm so proud of myself because I didn't think I would be able to face this part of my illness and I feel like I'm role modeling something really important to the people around me. I feel a different strength now or I'm humbled by something".

You know, families... there are important moments even towards the very end of the vigil at the bedside of connection and relationship and renewing vows with each other as family members, a hand holding squeeze. There are beautiful important moments throughout a serious illness that get very little spotlight, not that we want an illness to go through these, but we shouldn't discount the fact that there's a lot of ironic beauty in doing the dance of a serious illness with other humans.

Alex: Well maybe that's a silver lining to advanced care planning as well is having those conversations...

Megan: Yeah.

Alex: Makes you appreciate it and think about it.

Megan: Sure, tell someone you love them.

Dr. Winemaker: Yeah.

Megan: Thank you for bringing that up, Sammy. That is why I'm a death enthusiast.

[Laughter]

Megan: One of the reasons why is because there are so many beautiful moments, and also, is it not a gift to be able to say goodbye? Or to be able to have a longer goodbye? Even if there are difficult moments? Isn't it so beautiful to have those opportunities as well?

Dr. Winemaker: I think you should be a dying enthusiast.

Megan: Okay, a dying...

Dr. Winemaker: Yeah, death is a moment.

Megan: Yes, thank you for that rebrand and we know that semantics and vocabulary, they really do matter in palliative care.

Alex: Although I will say your outfit is...

Megan: It is.

Alex: Says death enthusiast.

Megan: It says death enthusiast. I'm rebranding to a dying enthusiast, Hsien, do you want to add on to that?

Dr. Seow: No. I just think... I mean framing is so important we've learned that language and you know while we talk about what is positive care and the definitions, we just want people to know that yes you may not have a palliative care unit in your community or a palliative care specialist, but that doesn't mean you can't get a palliative approach...

Megan: Right.

Dr. Seow: To care from your family doctor, from the nurse, from the home care PSW...

Dr. Winemaker: Your family.

Megan: Right.

Dr. Seow: Your family, your community. You know, 95% of care is delivered by the family and community. Only 5% of your actual care is by the health system. I mean, we give too much power to the health care system to, you know, to lead the whole journey and the whole experience so, part of our work is, yes, understanding what a palliative approach is, but taking back that power so that for that 95% of the time, you're in control. You have choice of who you want to be involved, how you want them to be involved, to check in with your community, and be a part of your community because, you know, if you need you want them to be there for you, you may have to be there for other people too.

Megan: I love that.

Dr. Winemaker: I almost clapped again.

Megan: I know was getting ready.

Dr. Winemaker: Yeah, take back the power!

Megan: Yes. I want us to wrap on this positive and warm note. And I want to also just pick up on something you said earlier, I think it was Hsien who said it, the concept of a good death or dying well. What does that that look like? What do you see that- what does that look like for someone?

Dr. Winemaker: You know, I always say, "I think it's different for everyone". And I think at the core of that, your experience has matched who you are and that hopefully you're not one of the people that says, "I wish I had known. I wish I had done things differently. If only this, that, or the other thing". If you're not saying those things, I think maybe you're getting the experience that matches who you are and that really is individual.

Dr. Seow: Yeah, it's a great question Megan. I think dying well, the first thing that came up to me means living well, because you know how you live your life every day with purpose or without regret maybe, I don't know if that's a bit cliche, but it is about living well I think that's what a good death is it means a good life lived one that, you know, represents who you are and has a high dose of hope, but also planning and preparedness. So, not everybody wants to know every detail and plan for their death, but people often want to prepare for what's ahead and not feel overwhelmed and caught off guard and ungored. So, I think, yeah, a good death just means having the people that you love and living each day, you know, fulfilled really.

Dr. Winemaker: We should check in with Alex because we've talked a lot about Alex dying today...

Megan: I know.

Dr. Winemaker: And just see how he's doing.

Alex: I'm happy to be the model for it.

Megan: How do you feel at the end of this case study now? What's coming up for you Alex?

Alex: I feel a lot more prepared to have conversations.

Megan: Okay.

Alex: Because I think, and I hope our listeners feel that way too, that this has been very informative and I think it's only- I'm like a lot of frankly men my age, who kind of fit that stereotype of, you know, late 30s early 40s, "I don't want to think about that" and I'm guilty of that too.

Megan: Yeah.

Alex: But I think when we have the opportunity to have a conversation that's so positive around it, then you have an opportunity to change your own thinking too and maybe I'll start having more of those conversations.

Megan: Yes. Well said. And they can be positive, right? And you can sometimes laugh about it in between too, right?

Alex: Totally. Yeah, I think the fun conversation could be who you don't want there when my wife and our time come, we can get into some gossip.

Megan: Yeah, you bring that up at the dinner table tonight and then you let us know how that goes, okay?

Alex: Sounds good.

Megan: Awesome.

Dr. Seow: Yeah, what's important to you? What do you want to be remembered for? Or what is your purpose? You know, what brings you joy? These are these are things that I think are not as scary as, you know, "What do you want when you're..."

Megan: Right.

Dr. Seow: You know, "... in your final week".

Dr. Winemaker: But we shouldn't reduce it all down to, you know, forcing ourselves to talk about dying and death and what our good death is going to be like...

[Laughter]

Dr. Winemaker: Because I think the essence of what we're all saying is that learning from that stage of life allows us to live, you know, life differently so that when our time comes that we are going to be one of those people that's in the know...

Megan: Yes.

Dr. Winemaker: And in more control and feel more grounded, prepared and proactive and, you know, we're going to be respectfully assertive and activated in our own illness journey and decrease that power gap and don't let it anyone take it away from you. You be you.

Megan: Beautiful. I think we have at least one convert to the waiting room revolution.

[Laughter]

Alex: Yeah, sure.

Megan: Thank you.

Dr. Winemaker: Welcome to the revolution. We'd like to tell people it is a peaceful revolution. We don't want to get in trouble. No one's storming anywhere. It's a peaceful revolution.

Megan: I love it.

Dr. Seow: It's very Canadian.

Megan: It's a very Canadian peaceful revolution.

Dr. Winemaker: Yeah.

Megan: Amazing. Thank you so much for taking the time today, Sammy and Hsien. Truly it feels like an honor to have you as guests on the show and I'm walking away, you know, my heart warmed, and I also have more practical information. So, thank you again.

Dr. Winemaker: Oh, it's our pleasure Megan and Alex. We're so grateful to be invited into this podcast space with you guys and you're awesome.

Dr. Seow: Yeah, thanks for having us

[Healthy Canadians logo with pulse sound]

[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 podcast 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
• Advance Care Planning Canada
• My Grief
• Kids Grief
• Youth Grief
• Fact sheet: What to do when facing a serious illness: 3 sets of questions to ask your health care team

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