Why the “End of Life Talk” is so important

Clip You’re listening to a Frequency Podcast Network production in association with CityNews.

Jordan 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 Heath-Rawlings. This is The Big Story. André 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.

André Picard Good morning.

Jordan 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?

André Picard I think when people start thinking about this, which they don’t do often enough, I have to say in passing, they say, 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.

Jordan What is the reality? Do we know roughly what percentage of Canadians get something close to that dying at home with caregivers around them?

André Picard It’s a very tiny minority. We know about 15% of people die at home. Most people die in hospitals, in Canada, unfortunately, 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.

Jordan 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?

André Picard I think there are 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 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 contact the hospice, etc. And this takes work. And then the third one is, again, when people do decide to die at home, they are 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 the hospital and again, that’s almost the worst case scenario, is that it’s ending up at the last minute in a hospital, because then you really are in the ER or in the ICU, and that’s not a good death.

Jordan 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, near that end of life stage, but who are saying, you got a promise, never put me in a home, 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?

André Picard I think they understand it partially. It is really a desire 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 miss. They 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 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 do 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 in 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.

Jordan 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 from an elder relative or parent.

André Picard Yeah. So generally it’s really difficult physical and mental labour, 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, et cetera. 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 difficult stuff and we shouldn’t sugarcoat it. People have to be ready for this. And the reality is, that most people do this caregiving. They do it lovingly and willingly, but they’re very often not prepared. And it’s totally demoralizing and exhausting. And we often drive caregivers to an early grave with the demands we place on them.

Jordan Are there resources available for caregivers in Canada? Maybe not training as you just described, but help.

André Picard There are all kinds of help, but you have to be able to find it, and 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 to 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 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.

Jordan When we did that episode on MAID, 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, and 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.

André Picard Well, what’s possible now is you can have advanced directives. They’re called 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 end of life, so not to be kept alive artificially, 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 that’s being debated now. Should you be able to have advanced directives for MAID, for assisted death and are 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 MAID 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, to use a crude term? And I think legally that’s very difficult. This exists in some countries, but it’s used 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 these images that people have, I want to just go and not suffer. But the reality is also we have to realize that having Alzheimer’s is not necessarily the worst thing in the world. You can have a good life. We catastrophize it a little too much. I talk 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 this 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.

Jordan What do you think of all the comments and questions about please don’t put me in a home, put me out on an ice flow, let me elect for MAID in advance? What is the fact that these are such big questions say about what people who are getting older view as the state of our elder care system?

André Picard Well, I think they speak to this really baked-in ageism that we have in our society, that their elders are not valued. We fear being declined. We really fear death. There are 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 process of life. 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 to that is not to have everyone have MAID it’s, 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, work with people at end of life, and it’s quite beautiful. You can have a good death in many cases. And let’s not forget most deaths, you know, there are 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 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.

Jordan 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?

André Picard Yeah, of course, it’s possible 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 or Finland they have much better end-of-life care, much better care for 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 reflect. 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. They’re dying, but they’re living the best possible life until the end.

Jordan When you say it’s the 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?

André Picard Well, it’s actually a whole series of very small things. It’s having lights that take 25 seconds to cross the street instead of ten so elders can still get around. It’s having decent public transit that lowers so people can get on without tripping. It’s making sure that people in the neighbourhood shovel the walk of older people who are incapable of doing it anymore. People end up in care homes in Canada for the most banal and ridiculous reasons 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, I mentioned they’re nice, they’re home. Like, they have 20 beds, not 200 like in Canada. But they always pair them with a school or a daycare center. So little kids are over playing 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, they love their mums, they love their grandmothers. But we don’t reflect that in public policy. We believe it individually, but we have to make that leap and believe it collectively.

Jordan Who has the power to start us on that leap? 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 government see it. How do you start something like that?

André Picard Yeah. In Canada, I guess we can’t have any discussion about health care without talking about 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. During COVID we’ve had to date 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 are 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. We 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 egg thing, I’m not sure where you start to change with the change of attitude or with the change of policy.

Jordan André, 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 has studied this and had these conversations at length with children who are being asked by an aging parent right now to either promise you’ll never send me to a home or help me get a medical assistant death if I start to lose my mind? What would you tell them?

André Picard I’ll tell them, to have these frank, difficult conversations while your parents are still healthy, while 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 going to get MAID. It’s not that simple. MAID is a really important issue. I think its important people have that choice and that ability. But the reality is, very few people are going to opt for MAID for a whole bunch of reasons. So plan financially, emotionally, practically, and you can have a good life and a good death if you plan ahead.

Jordan Thanks again, André, and thanks for all your work speaking up for Canada’s elderly community.

André Picard Thank you for caring about this issue too.

Jordan André 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. For the second time in the four-year history of this show, we are launching a listener survey. We want to know what you think of the show, what you like about it, what you don’t like, what topics we should cover, more or less, if you want merch, if you want to buy a hat, all sorts of other things. We do, in fact, have some merchandise to give away to people who fill in the survey. So if you would like to help us out, head to our website. You should know what it is by now. It’s thebigstorypodcast.ca. And you can add slash survey to that address, or you can just click on the survey button at the top of the page. It’ll take you no more than five or ten minutes to fill out. You can enter your email address and we will randomly draw some of our listeners to win some tote bags. Even if you don’t want a tote bag, take a second and fill out the survey. Even if you want to criticize me, in fact, that’s what I’m looking for. All feedback, very welcome. You can find this podcast wherever you get your podcasts. You can ask your smart speaker for it by saying, play The Big Story podcast and please do. If you’re not going to fill out the survey, at least rate and review us. That is the least you can do for this free show we keep giving you. Thanks for listening. I’m Jordan Heath-Rawlings. We’ll talk tomorrow. Back to top of page