The Decibel - Where grief fits into Canada’s healthcare system

Episode Date: January 3, 2024

There is a universal – but uncomfortable – truth about grief: We will all experience it at some point in our lives. And with the scale of death we witnessed during the pandemic, grief is a lot more present in our lives.And yet, Canada doesn’t have a cohesive network of support for grief. The Canadian Grief Alliance recently received federal funding to look into this. Paul Adams is one of the co-chairs and is on the show to explain what a better system could look like.Questions? Comments? Ideas? Email us at [e-mail]

So Suzanne was, she was a foreign service officer. She was a Canadian diplomat. And she was, you know, she was a very hard worker. She was a pull-herself-up-by-her-bootstraps kind of person. This is Paul Adams telling us about his wife, Suzanne. She grew up speaking Hungarian at home, French on the streets, and English in school. So she was trilingual. She was a very thoughtful person. She was a very curious person. She loved swimming, she loved hiking, she loved cycling. We met on a Team Canada mission with the Prime Minister when

she was working as a diplomat and I was working as a journalist. Career was very important to her, but family was even more important, I think in part because she had not had a stable and happy family life as a child and she wanted her kids to have what she hadn't had. We were living in New Zealand where Suzanne was working at the Canadian embassy in Wellington. And she was at a conference at an island on the South Pacific. And she phoned me and said she had found a lump in her breast and asked me to make an appointment with our doctor. When she came back to the airport, she went straight to the doctors and from there to tests. And by the time I saw her, she had had a confirmed diagnosis of breast cancer. And about a year later, we returned to Canada. And it was not too long after that that she got the diagnosis that it was stage four.

In other words, that it was a terminal illness that she would die of. And she lived about 30 some months after that before she died, which is pretty typical for that diagnosis. You know, something that I do remember from that time was that in the last four or five months when it was clear that she was on a path and that she was not going to live that much longer, she had three things she wanted to do. She wanted to see Alex graduate from high school in June. She wanted to spend some time at the cottage and she wanted to make it to our wedding anniversary, which was in September. She did make Alex's graduation.

She was swimming that summer at the cottage until about six weeks before she died. And we had our anniversary dinner out at a restaurant in Ottawa exactly one week before she died. So she was able to do all of those things. After Suzanne's death, Paul and his family dealt with a lot of grief. Paul is now the co-chair of the Canadian Grief Alliance. The group recently got a million dollars from the federal government to help figure out how Canada can better deal with grief. So today, Paul is here to explain why grief can be different for everyone, how the pandemic may have changed the way we think about it,

and how we can better help people through some of the most challenging moments of their lives. I'm Mainika Raman-Wilms, and this is The Decibel from The Globe and Mail. Paul, it's so good to see you. Thank you for being here. Good to see you, too. We met, of course, a number of years ago at Carleton when you were my first, or one of my very first, journalism profs there. Right, right. And you were a great student. Thank you for saying that. Okay, so Paul, I think we should really just start off kind of basic today, really. How do you understand grief

and the different ways that it can manifest person to person? Well, I think that when I reflect on the experience that my wife, Suzanne, had, and then our kids, Sophia and Alex, had, and then my own experience. The thing that strikes me is that, and I've seen this with other people too, is that everyone has their own specific journey with regard to grief. Everyone has very particular things that are peculiar to them, and yet there are patterns. To me, part of the issue is this, is that there's one kind of socially sanctioned reaction to bereavement and deep loss, and that's sadness. In fact, most people who experience profound loss have many other dimensions to

their grief, and they can include anger. They can include regret. They can include guilt. People talk to me about feeling numb and maybe feeling guilty because they feel numb, that they should feel more sadness than they do, because that's the social expectation. So what I think I've learned about it is that it manifests very, very differently in different people. And yet there are patterns, there are commonalities, and that if you connect with others who have had this experience and are able to talk about it, that you begin to feel a little less isolated. And I think that if there's a single big problem with grief in our society, it's that people who are experiencing it often feel radically isolated. And that leads to other

problems, I guess. I mean, so it sounds like it is important to address, but I guess why do we need a special spotlight on grief specifically? Like, I guess, why isn't more awareness on mental health enough? You know, I think in a way, all the attention that we've put on mental health in recent years, certainly compared with when I was young, and the openness to it is a really good thing. And I think it's a product of that openness to mental health that we're now beginning to pay more attention to grief. But there's a big difference between what mental health as it's understood institutionally and what grief is. And, you know, grief is not a dysfunction. Grief is normal.

If you lose a parent, if you lose a child, if you lose your best friend, it can also happen that you lose a relationship or, you know, there can be other forms of loss that constitute grief. It's not always connected with death is what you're saying. That's right. That's right. But it would be a mental health issue if you didn't experience any grief when you lost your spouse or your child or, you know, somebody very close to you. And what we know about grief is that if it's unsupported, it can sometimes turn into a mental health issue. So it can turn into depression, anxiety and things. But many of the approaches we have to things like depression and anxiety are actually contraindicated for grief. If you are depressed or anxious, those are things that you want to get out of your life, right? Yeah. Grief is not something that you want to just push away. What you want to do is to find some way to digest, to metabolize that grief, to live

with it, and to carry on with your life. So to work through the grief instead of kind of finding other ways around it. That's right. And I think we have this kind of almost kind of a heroic culture where everybody's supposed to be strong and push through these things. And it's not something that most people who are experiencing profound grief can do. And I would say another feature of the grief experience, which is quite common with bereavement, is that the bereaved person, the person in grief, continues to be in that state for a long time and the people that are supporting them sort of fall away like after the funeral a month has gone by two months three months go by you know everybody goes back to their ordinary lives and it may be difficult for that person

who's grieving to talk about what they're going through. They may feel isolated and there's a kind of expectation. Okay, well, it's been a month, it's been six months, it's been a year. Particularly, it's been a year. Like, get over it. I guess I wonder, do you think the pandemic has, in a sense, made us maybe more comfortable with the idea of grief? One of the things that happened in the pandemic in that period when we were locked down at home and where people were locked into nursing homes and where people were dying and we were seeing on the television the scenes from our hospitals and the people on the ventilators and

all that sort of thing. We live in, I think, a death-denying society., like we tend not to want to face death and we don't want to face grief either. We couldn't turn away. You know, it was a terrible time for us all, but it was a time of reflection about suffering. I do think that it opened us up just the sheer scale and the fact that instead of being pushed away and silenced and disappeared, it was front and center. And I think that grief is a universal experience, but we spend a lot of our lives not opening up to it, not allowing ourselves to be exposed to it. In the circumstances of the pandemic, it was very difficult to do that, right? Like that you, you witnessed the grief of others, and it created a tunnel into your own grief, and people began to see it and share it.

And I think it is, you know, we've been more open about mental health. And I think this is an offshoot of this is that we're thinking more of our internal states and taking it seriously and not just pushing them away. And we have to do more of our internal states and taking it seriously and not just pushing them away. And we have to do more of that. We'll be right back. So let's talk about how we can maybe improve things then, Paul, because you're, of course, the co-chair of the Canadian Grief Alliance. So what exactly does that group do? Let's just start with that.

So we started at the beginning of the pandemic because we could see that there was going to be what we call the pandemic of grief that was going to be parallel with the COVID pandemic. Because we were seeing so many people dying of COVID. So we were seeing literally more deaths. So there's going to be more bereavement. But we were also seeing in the conditions of COVID, whatever you died of, families were cut off and loved ones were cut off from the normal rituals that connect us with our grief and help us deal with it. So we were concerned that Canada was not ready for that. And I think there's some indication now that we are beginning to see some signs of dysfunction, people who haven't been able to work through their grief as well as they might otherwise have.

And so we formed at the beginning to draw attention to this, that more Canadians are going to need this support than ever. And where is formed at the beginning to draw attention to this, that more Canadians are going to need this support than ever. And where is it going to come from? And we were looking for a national strategy and a large commitment of funding from the federal government. I think our requests or our demands on the system at that time were, you know, we scrawled them on the back of an envelope in a hurry to try to generate some interest and concern. We now have a million dollars from Health Canada, and we're going out and we're in a much more systematic way, looking at the system, talking to people providing grief services.

We've just done an opt-in survey, which I thought maybe a few hundred people would reply asking people who have suffered grief or loss to tell us about their experience. We've had thousands and thousands of people and we have been extending the period because, you know what, people want to talk about their grief, even if it's just clicking buttons on like how strongly they feel about this or how their experience was. Did that surprise you, Paul, to get such a huge response, like so many people responding to what you're asking? It did, and it shouldn't have. I should have known that people do have unmetabolized grief or grief that hasn't been fully expressed. And that some people would seize an opportunity to talk about this, even if only through the form of a survey. And I should

say that hundreds of those people who responded have also said, like, how can I help? How can I get involved? So I think there's an unexpressed need out there. And people have a desire to address that need, but they don't know how to do it. So we're hoping to fill that gap a little bit. And we're also, by the end of this two-year process that we're engaged in, hope to have a better understanding of what kind of policies could be put in place federally and provincially to support, you know, a network of grief services and also to improve the knowledge and understanding of the public about grief and how they can help themselves and how they can help the people around them. Well, so for someone like that, Paul, for someone who is grieving,

I guess, what supports do currently exist in Canada? You know, I've been involved with this Canadian Grief Alliance and we're now engaged in consultations, and we're talking to people across the country who are engaged in grief support. And what I've realized so far is that there is no system. There are lots of people doing good work, but they're not connected. It's not comprehensive. So you have, for example, some bereavement programs that run out of hospices. But of course, a lot of people who are bereaved have no connection with a hospice. You know, in my case, Suzanne did die in a hospice and there was no grief support that I know of that arose from there. There are groups in church basements.

There are organizations that may grow out of, you know, parents who have lost kids to cancer or people who have lost loved ones to suicide. So they're attending to very specific concerns. But people fall between the cracks. And where the cracks are differs from place to place. So in Saskatchewan, it may be there are services in Saskatoon and Regina, but not in the rural areas. In Toronto, there may be a support group if you've lost someone from suicide, but not if you've lost someone from a drug overdose, this kind of thing. So something we find in the consultations is that we may be talking to people who are involved in grief support in a province like, let's say, Nova Scotia. And you realize, oh, the person in Cape Breton doesn't know that person in Halifax.

And part of what we're trying to do is we're trying to connect people to create networks and to support those networks. We're building a website. We're going to try to draw on the resources from across the country so that, you know, right now, a researcher at Dalhousie and a practitioner on Vancouver Island don't have as much connection as they could. And I think we can all support each other in this field. To be clear, I don't think at the end of this, we have some national grief care program like PharmaCare or Medicare, because I think the way we want to address this is to use those community resources, to use the church basements, to use the hospices, to use the capacities of communities around the country who are trying to address it, but to link them up, to fill the gaps, to use the capacities of communities around the country who are trying to address it,

but to link them up, to fill the gaps, to support them, to give them the information, the training they need to help them do the best possible job. So it sounds like we're kind of at the exploration stage of figuring out how exactly to do this, but eventually this kind of a national strategy is what you're after here then. Yeah, well, we called for a national strategy at the beginning of the pandemic. I don't want to anticipate, like Health Canada has asked for a report from us about what we find and what we suggest for next steps. I don't want to anticipate that because as you say, we're about six months into a 24-month process. So I guess as the Canadian Grief Alliance is embarking on this work,

I guess we're talking about societal discomfort and getting more comfortable with these conversations. Is there a better model out there? Do other countries, other areas of the world do it in a way that we could maybe take inspiration from? Well, I think if you look to the United Kingdom and to Australia, they do have a national strategy. They do have, in Australia, there's a national program and phone-in lines comparable to health. Like a hotline, I guess?

Like a hotline, that sort of thing. There are websites with resources and so on, there's like there's been more kind of intentional approach to grief as an issue, as opposed to just sort of letting individual little groups here and there and individual institutions do what they do. And so we need to take a more holistic approach to this and sort of go, OK, who needs the help? Who needs it? Where? Who needs it? When? And how do we support it? How do we fund it? How do we resource it with people who know how to deal with it? So, I mean, this this obviously sounds like it is very important, Paul. But I guess I wonder, because one of the things we talk about on the show when we talk about health care across the country is that there are so many areas of of health care and in general that need help right now. We need money, access time, of all the priorities that are out there, I guess,

why is it necessary in particular to address grief? I think as a society, we have a concern with the suffering of our fellow Canadians, right? And we should properly do that. And I think that this is, in a sense, an extension of that concern concern but i think it's also important to understand that if grief isn't supported what can happen is that it turns into a real dysfunction in the longer term it can turn into depression it can turn into anxiety it can

turn into substance use and abuse you know it can turn into other kinds of social problems. It affects people's productivity on the job. So if you just want to deal, sort of address it from the point of view of like a spreadsheet, well, unsupported grief can lead to other issues that do cost the system, right? They not only cost the individual in terms of sustained suffering, but they cost the society in terms of having to support them in other ways,

including physical health, but also mental health. When Suzanne was dying, I had a 14 and an 18-year-old, or it started off a 10 and a 14-year-old. I think a lot of people can think about the worries they have about their teenagers. Right. And then you drop a bomb into the middle of that, like the loss of a parent. Well, you know, I'm glad to say that my kids have returned

to the trajectory of their lives. I suppose you'd say. They're back on track. But, you know, they could have gone off the rails, right? And then that's everybody's problem, right? So we're concerned about each other because we should be concerned about the suffering of others, but also because it can affect our other systems in our society. And, you know, I don't think we're looking for, like in financial terms, the kind of support that say pharmacare or dental care. But I do think that we could be doing more, that we could understand more and we could do this in a sort of a way that was economically sensible for the country. Paul, thank you so much for taking the time today. Well, thank you. That's it for today.

I'm Menaka Raman-Wilms. Our producers are Madeline White, Cheryl Sutherland, and Rachel Levy-McLaughlin. David Crosby edits the show. Adrian Chung is our senior producer, and Angela Pachenza is our executive editor. Thanks so much for listening, and I'll talk to you tomorrow.