Why the "End of Life Talk" is so important

You're listening to a frequency podcast network production in association with City News. It's a hard conversation to have with an older loved one. It's hard to even think about. So naturally we want to keep it short. Which is why, when so many children or siblings or grandchildren ask, what should we do when you get older and you need help? The answer is quick and blunt. Just don't put me in an old folks home. Or I want to die in my own house, in my bed. Conversation over, usually. It's just too painful to push through that. But we have to. Because if we don't, Canada will never do a better job at caring for our elders. And we are about to have a ton of elders. Right now, long-term care facilities, those homes, where every older person doesn't want to end up, are this country's default solution to aging and end of life. So when mom says, "I want to die in my own house," we have to discuss, seriously discuss, how rare that is, and how or if it is possible. You don't want to have that conversation, neither do I. But if you haven't noticed, our long-term care facilities are getting more crowded. Conditions are getting worse. And at least in Ontario, people waiting in hospital for a bed in one can now be moved out of their care area. Which means that just don't put me in an old folks home could end up as an old folks home a few hours drive down the road. Unless we all start talking plainly and quickly. So here's how. I'm Jordan Heathrawlings. This is the big story. Andre Picard is a health reporter and a columnist at the Globe and Mail. He is also the author of Neglected No More, the urgent need to improve the lives of Canada's elders in the wake of a pandemic. Hello, Andre. Good morning. Maybe can you start by telling me about the conversation that you've had with elders about their old age and how they want to pass when it's time. What is the dream for most elderly Canadians? I think when people start thinking about this, which they don't do often enough, I have to say in passing, they say, "You know, I want to die at home, surrounded by family." They sort of have this Hollywood view of how life ends. You're just going to just pass away ever so slowly with a smile on your face. So people have this idealized view of how they want to die. And unfortunately, it's not the reality for most. What is the reality? Do we know roughly what percentage of Canadians get something close to that? You know, dying at home with caregivers around them? It's a very tiny minority. We know about 15% of people die at home. Most people die in hospital in Canada. Unfortunately, it was probably the worst place to die. Some have the good fortune to be in a hospice or to have palliative care at home. But that's a tiny minority and it really depends on where you live. I think we're going to get into the details in a few minutes. But what is keeping that number so low? Why aren't more Canadians able to have their final days, even if they go to a hospital at the very end? Have their final days at home? I think there's a couple of reasons. I always say almost every problem in healthcare is systemic. So it really is a systems problem. We have a system that's built around hospitals. It's a really hospital centric. So that's where people end up, almost by default. So there's that part, the structural part. And then there's the fact that we are a death denying society. We don't like to talk about this. So these decisions tend to get made at the last minute in crisis. And that's not how you have a good death. You have to plan for it. You have to think about it. You have to know contact the hospice, et cetera. This takes work. And then the third one is, again, when people do decide to die at home, they're often unprepared. So they're shocked by the reality of it, that it's not all wine and roses. They panic. People call 911. They end up in hospital. And again, that's almost the worst case scenario is that is ending up at the last minute in the hospital. Because then you really are in the ER or in the ICU. That's not a good death. The reason we wanted to talk to you, firstly because you wrote the book on this subject. But we did an episode on medical assistance in dying not too long ago. And our guest made the same point you just made that we don't talk about this stuff enough in advance. And we started talking about what kind of conversations we generally do have. And one thing that's come up repeatedly is parents, I know I've experienced this. I know a lot of people my age are experiencing this right now. Parents who are getting older, who are not yet thankfully, you know, near that end of life stage. But who are saying, you know, you got to promise, never put me in a home. You know, never, never send me away. Make this promise to me. And do you think that parents understand what they're asking when they ask their children to make that promise? I think they understand it partially. It is really a desire, you know, to not have a horrible death to be alone when you die. But I'm not sure they understand the burden that that place is on a loved one. This is a lot of work. It's a lot of effort. It's not a given. People don't just die peacefully from one moment to the next. It's a long process. It's exhausting in Canada. We have very little support for caregivers, even though there are a lot of them. About 7.8 million caregivers in Canada at any given time. But the by the time death comes around, people are totally and utterly exhausted. And it's not easy. So I think people have to have these conversations in much more detail, much more frankly. I say in my book, the single most important conversations we should be having are around the kitchen table. Just what happens when if you have a stroke or if you have dementia, what what you expect me to do. And here's what I can actually do. This is the reality. And people have to have that tough talk. And it's uncomfortable, but it's way better than the alternative. I can tell you from talking to many, many families. Suddenly your loved one has a stroke. Is it hospital? Has to go to long-term care home? Could die? That is a moment of total crisis and panic and it destroys families sometimes. Can you tell me more about the burden you're referring to? What kinds of things go into being an at-home caregiver in general? Because I know every person is different for an elder relative or parent. Yeah, so generally it's really difficult physical and mental labor. So toileting, feeding, bathing. These are all very difficult things. I am a big advocate for training. We send new parents to newborn training before they have a baby. They learn how to change diapers, etc. We should be doing this for adults. This is going to be the reality for most of us. We're going to have to learn how to change continents, pads on someone with dementia, how to bathe them, how do you lift someone frail out of a bath? That's really sophisticated stuff that you have to learn. The mental aspect, if you have a loved one with dementia, they may wander. They may stay up all night. They may be violent. They may be confused. This is really, really difficult stuff and we shouldn't sugarcoat it. People have to be ready for this. The reality is most people do this caregiving. They do it lovingly and willingly. But they're very often not prepared. It's totally demoralizing and exhausting. We often drive caregivers to an early grave with the demands we place on them. Are there resources available for caregivers in Canada? Maybe not training as you just described, but help. There's all kinds of help, but you have to be able to find it. That takes work. We don't make it easy to navigate our system. There actually are very good training programs, a lot of good charities. But the system is not designed to make it easy for caregivers. One of the biggest failings in our system is we don't have a lot of respite care. So respite care is essentially you're caring for someone at home full time. You just need a break for a few days or a week and they go into a long-term care home they get taken care of. And you just recharge. Without that, without respite care, a lot of people end up in long-term care homes prematurely because people at a certain point, they just say I can't do it anymore. Hospitals, if you ever visit hospital ERs, they will tell tales of what they call a. It's not a great term, but they call it granny dumping, where people just eventually just bring someone to the ER and they drive away and they say I can't do it anymore. And then they get placed in a home in a crisis situation. When we did that episode on MADE, one of the things that I was surprised by is we got a number of emails and DMs afterwards. From people who, as I mentioned, are having these conversations, I'm just going to read you quickly. One gentleman who wrote in, my grandmother had Alzheimer's. Her last five years were rough. My dad has told us that he doesn't want that type of ending. He actually points out to the island in the lake in the woods that he just wants us to release him to die if it goes that way. Obviously we're not going to do that, but is there any way you can set up now for lack of a better term, a kill switch in your will where you say, "If I get to x point and I can't respond and I cannot consent, I want a medically assisted death. I assume that's not possible, but since we're talking about these conversations, I wanted to ask you what is possible?" Well, what's possible now is you can have advanced directives. They're cold. You sign these, and again, you should do this well in advance when you're still healthy. Do you want to do not resuscitate order at the end of life, so not to be kept alive artificially? You know, so you can set out the terms and these are provided to the hospital. That's really essential. So you should have that. Now, the question, this is a big legal question being debated now. Should you be able to have advanced directives for made for assisted death? And currently in Canada, no, you can't do that, but this is an active discussion about expanding our law. Now, it's a very difficult, technical, legal, moral, ethical decision. How do you do this? Because I think one of the essential aspects of a made is the ability to back out to change your mind. So once you have dementia, you lose that ability. So do you give people someone who has your legal rights, takes care of you when you lose your faculties? Do they have the right to say, yeah, pull the plug, you know, to use a crude term? And I think legally, that's very difficult. So this exists in some countries, but it's used very, very rarely. The other thing I'll say is, you know, I hear these stories all the time, put me out on the lake, put me on an ice flow, all the these images that people have. I, you know, I want to just go and not suffer. But the reality is also we have to realize that, you know, having Alzheimer's is not necessarily the worst thing in the world, you can have a good life. We could testrify it a little too much. I talked to a lot of families that have a loved one with Alzheimer's, and they have wonderful moments with them. Different personalities. It's a different relationship. I saw this with both my parents. So I think it is notion that it's the end of the world. We have to dispense with that too. And all this comes through really detailed and serious conversations about what is life like with Alzheimer's. It's a very slow decline for many people. It can be a good life. And we shouldn't forget that. What do you think all the comments and questions about, you know, please don't put me in a home, put me out on a nice flow. Let me elect for made in advance. What is the fact that these are such big questions say about what people who are getting older view is the state of our elder care system? Well, I think they speak to this really baked in ageism that we have in our society that our elders are not valued. We fear being, you know, decline. We really fear death. There's a lot of societal issues wrapped up in this. So people shouldn't be as fearful as they are of dying. This is part of the the process of life. You know, we're born. We have our life and we die. And we should again, we should plan for that. And we should adapt our societies to that. So I think a lot of reasons people are fearful of long-term care homes is because they're horrible. And the answer that that is not to have everyone have made is to not have horrible homes. The reason people are fearful of death is they think it's going to be awful and grotesque. And it doesn't have to be. I've been to many palliative care facilities where with people at end of life in it, it's quite beautiful. You can have a good death in many cases. And let's not forget most deaths. You know, there's about four causes that account for almost all deaths in Canada, cancer, cardiovascular disease, COPD and diabetes. All of those have very predictable ways of of playing out. So we know when people are going to die, how they're going to die. All this can be planned for and we can minimize people's pain and suffering. And that's ultimately what we should be doing. Rather than looking for cop-outs like, oh, throw me out in the lake. Let's make life decent until the end. Is it possible to give more elderly Canadians their dream? Is it possible to provide the services that are needed to keep elders in their homes as they get towards death without turning their children into 24/7 caregivers left alone with this burden? Yeah, of course it's possible. You know, to say it isn't is a cop-out. Many countries do it much better than Canada. I think of the Nordic countries like Denmark, Finland. They have much better end of life care, much better care of elders. And it's a societal decision. So I think all this is doable, but we have to put our minds to it. I think the single biggest difference between us and say a country like Denmark is they don't spend more money, they don't have a magic cure to dementia, but they have a philosophy that says we value our elders and we want them to live in the community until it's no longer possible. So yes, long-term care homes are necessary for some people, but they should be the last resort. They shouldn't be the first reflex. So that's the problem in Canada. The problem in Canada is not that we have long-term care homes, is that we have way too many of them and we have people there who shouldn't be there. And when we have homes, they should actually look like homes. They shouldn't look like prisons. They shouldn't smell like urine. They should be nice places where people live out their final days. So if I visit a place in Copenhagen, that's what I see. I see a home where people are living. I know they're dying, but they're living the best possible life until the end. When you say it's a difference of philosophy in terms of keeping our elders in their homes as long as possible, what does that look like on the ground in places like Finland and Denmark? You've described the long-term care facilities, but what kinds of things happen to keep elders from going there in the first place? Well, it's actually a whole series of very small things. It's having lights that take 25 seconds across the street instead of 10, so elders can still get around. It's having decent public transit with the that lowers so people can get on without tripping. It's making sure that people in the neighborhood shovel the walk of older people who are incapable of doing it anymore. It's all these, you know, people end up in care homes in Canada for the most banal and ridiculous reasons, you know, that they can't do their own shopping. So there's a lot more, I think, just a collective attention to older people. And then when they do have homes, you know, I mentioned they're nice, they're home-like, they have 20 beds, not 200 like in Canada, but they also, they always pair them with a school or a daycare center. So little kids are overplaying with the elders every day. People with dementia talk to kids every day. It brings some life to them and it just says to them, you're part of society. And that's the philosophical part that I think we're not doing well. I think every Canadian with few exceptions, you know, they love their mums, they love their grandmother's, but we don't reflect that in public policy. We believe it individually, but we have to make that leap and believe it collectively. Who has the power to start us on that leap? You know, is this a federal issue? That's where maid comes from, provinces dictate healthcare policy. You're talking about sort of a sea change in the way all levels of governments see it. How do you start something like that? Yeah, you know, in Canada, I guess we can't have any discussion about healthcare without talking, but the constitution. But this isn't an issue of jurisdiction. It's an issue of, it's the public that has to demand this. That's at some point we have to say this is intolerable. You know, during COVID, we had what we've had today 21,000 people die of COVID in long-term care. I call it in my book, a massacre of neglect. Why is this tolerable? Why are we not talking about this every single day? Why is this not a ballot box issue? The only solution offered up is we're going to build more long-term care homes. So we're going to give people more of what they don't want. This to me is a perversity of public policy, but the problem eventually comes down to the public themselves. When they get into that ballot box and mark their vote, are they deciding based on the state of elder care? No, they're deciding on the price of gas or the economy. And the old people just get forgotten time and time again. And that's why politicians don't act. They don't feel any obligation to act. And I think it goes well beyond that. I think we actually focus too much on long-term care, which should be talking about the alternatives to long-term care. We should be talking about investing more in home care, supportive housing, all the stuff between the time you retire and you're relatively healthy and the end of life, which is maybe 25 years later. We've got to fix all that. We've got to make society more elder-friendly. We have to get the ageism out of our public policy. We have to not just say we respect our elders, but do it in legislation and do it in programs. So it's all kinds of little things have to happen for the philosophy to change. And it's a chicken and a thing. I'm not sure where you start. Do I change with the change of attitude or with the change of policy? Andre, thanks as always for your wisdom on this. The last thing I want to ask you about is on behalf of the people who did reach out to us after our medical assistance in dying episode. What would you say as somebody who's studied this and had these conversations at length to children who were being asked by an aging parent right now to either promise you'll never send me to a home or help me get medical assistance to death if I start to lose my mind? What would you tell them? I tell them, have these frank, difficult conversations while your parents are still healthy. Well, they still have their full faculties and be honest about it. Be honest about what you think you can do about what they should expect and don't just take this cop out while someday you're gonna get made. It's not that simple. You know, made is a really important issue. I think it's important people have that choice and that ability, but the reality is very few people are going to opt for made for a whole bunch of reasons. So plan, plan financially, emotionally, practically and you can have a good life and a good death if you plan ahead. - Thanks again, Andre, and thanks for all your work speaking up for Canada's elderly community. - Thank you for caring about this issue too. - Andre Picard of the Globe and Mail, if this conversation helped you, you really should check out his book, Neglected No More. That was the big story and I have an update for you. We could use your input. 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