August 4, 2020
In May 2018, the Vanier Institute published Family Perspectives: Death and Dying in Canada1 by Katherine Arnup, PhD, which examined the evolution of death and dying across generations, the desires and realities of families surrounding death and dying, the role of families in end-of-life care and its impact on family well-being.
With the current conversation surrounding COVID-19 and post-pandemic context, we joined in conversation with Dr. Arnup to hear her reflections on some of the themes explored in the 2018 report, and on the impact of the pandemic on conversations surrounding death and dying in Canada.
Tell us about how you feel COVID-19 has impacted the conversation and attitudes on death and dying among families and policymakers in Canada.
Death is in many ways in the public eye more now than it was prior to COVID-19, and has been from the get-go, once the virus became a presence in the world, because a number of countries experienced a large number of deaths before it really hit here. People were very aware that something major was happening in terms of death.
In Canada, we’ve had daily deaths, casualties and case counts being reported, much like in wartime. There’s been war imagery accompanying this in many ways, but certainly in my lifetime, I’ve never seen anything like this – it’s almost unavoidable. If you visit the CBC website, the first thing you see is the current counts, which makes you very aware of how many people have died. You can’t really get away from it, with these constant reminders. There’s a sense that we’re “at war” with a virus. Especially at the beginning, there was a sense that it could be anywhere, people nearby could be carrying it, and you could get it and it could kill you. A lot of fear – fear of the virus and a fear of dying.
One of the themes in Family Perspectives: Death and Dying in Canada is that people’s fear of death and dying deters families from having important conversations about it. Do you think the pandemic has forced people to think about death in a more in-depth way, or have anxieties and fears caused more avoidance of the conversation on death and dying?
I think it’s the latter. In my report, I was talking about a kind of acceptance of death and planning for death. But since there are many unknowns around COVID, which has struck so many people throughout the world, it’s different from anything any of us have experienced.
I think one of the biggest ways that COVID-19 and death have been front and centre throughout the pandemic is around seniors and their families. It’s quite true that the virus poses a greater risk for seniors than for anyone else, although certainly other factors make people vulnerable as well. However, seniors, and particularly people in their 80s and 90s and people with comorbidities, are likely to have a bad result and perhaps die as a result of contracting the coronavirus.
That’s especially been the case in long-term care facilities. In Ontario, the long-term care facility in Bobcaygeon was one of the first ones that the public really became aware of, where they had many deaths in a short period of time. Overall in Canada, the most recent data on this showed that 81% of the deaths in Canada were in long-term care, compared with the average of 42% in developed countries in the OECD.2 The numbers are much higher in Canada, so dramatic that the military was called in for assistance in Ontario and Quebec, which also fits with the military and war metaphors. They reported incredibly appalling conditions in those long-term care homes.3
I think a lot about long-term care homes now in a way that I didn’t before. I believe that I was just like most Canadians in that I didn’t think about them, beyond saying “I hope I never end up there,” and I think that’s very typical of Canadians. Maybe true for people in other countries, but I can say it for Canadians and that fits in with some of the things I’ve written about in the 2018 report and elsewhere: we want to live forever, but we want to be healthy, strong and independent – those are huge values for us.
Living in long-term care is something we really don’t want to think about, so most of us haven’t looked at the conditions there – many of which existed before the pandemic. That is, often four people to a room, staff working at several homes, understaffing, staff being very busy rushing from patient to patient and then going to another home. A lot of those things were happening already, and they created the conditions for the pandemic to grab hold and decimate long-term care populations.
I think those who have family in long-term care homes have had a huge wake-up call. They probably knew something about the conditions, and some of them were active caregivers in those homes – that is, going and caring for their loved ones – while some people virtually never visited. My aunt was in a long-term care home in a small town not that far from Bobcaygeon. I visited her when she was dying, and was actually really impressed with that home. She had her own room and you could tell that the staff cared for their patients, for their residents. I don’t think everything negative that we’ve seen is the case for all long term-care by any means. But we mostly just haven’t thought about it.
Pat Armstrong, a major scholar of health care in Canada, has been involved in a 10-year study of long-term care homes.4 She and her team remind people that though we don’t want to think about them, any of us could end up in long-term care almost in the blink of an eye: a major accident or a stroke, a fall that means we can’t care for ourselves, a diagnosis of dementia. Any of those things could mean that I end up in a long-term care home. I don’t want to, like most people, but we always think it’s going to be somebody else and not us. I think that the crisis has made us aware that it can be anyone – our mothers, our fathers, our sisters, ourselves. With change – and only one changed circumstance has to happen – we could be there as well. It’s a reminder that we all need to be fighting to change those institutions and how people die.
I was looking at the list of desires and assumptions discussed in the report, two of which stood out as I read the military report: we want to die at home and we want to die with dignity. It’s very clear that there was no dignity in the way that people were dying in long-term care homes. Indeed, there was no dignity in how they were being cared for, because of the conditions there. It’s also clear that people are there in those facilities because families can’t take care of them. It’s not that families don’t care. It’s that their own lives and the demands of their lives, and the lack of home care, means that they can’t care long-term for a family member who’s got dementia and maybe is acting out, or a family member who really needs 24/7 care.
Many Canadians also assume that they can get all the home care they and their families need. The pandemic has meant that many people had to cancel the home care that was coming in, especially at the beginning, because they were afraid to get COVID from their home care provider. Home care providers, by their very nature, are usually working in several homes. So, they’re potentially carrying the virus to many homes. It’s meant that not only is there not enough home care generally, but in the case of COVID, people were also hesitant to have those carers coming into their homes.
Like the pre-existing challenges in many long-term care homes, we’ve seen certain vulnerabilities and inequities amplified within the pandemic. Do you find any hope in how the conditions of long-term care are now being brought to greater public awareness?
With long-term care homes, I feel a need to speak out about it, and to press governments to make changes that could have a huge impact, such as federal standards, or for senior care to be included in the Canada Health Act so that it becomes a shared responsibility across governments.
I think families have really mobilized and have seen the shortcomings and some of the reasons why the conditions are so bad. This is partly due to the for-profit homes, which have higher deaths, but also a lack of inspections and of enforcement of what exists in the law. In bringing it to the public attention as it has, in being such a tragedy, I think that there is hope for improvement, and I hope that many more people are now aware that it could be them, that it could be their families.
People who have children with severe disabilities who are living in congregate care are also facing similar issues of not being able to have family with them, as they still aren’t able to go into those homes. I do see a lot more discussion now around families as caregivers, having them recognized as caregivers and not just as visitors, as they’re being talked about. It’s an issue that the Vanier Institute has raised, I’ve done work with the Change Foundation, and there are other organizations that have made progress on that. So, I feel positive and see hope there for a recognition of the role of caregivers and their importance in the health and well-being of those who are cared for.
There has been increased opportunity to talk about advanced care directives. Even if people aren’t necessarily having those conversations, I think that if they’re faced with a family member getting COVID, it will spur the realization that we don’t always know what our family member wants. Even though the conversation around death hasn’t come on to the table in the best way, I think it provides openings for those of us who have been promoting the importance of advanced care. It provides an avenue for discussion, to be able to say to people that this is a realistic concern. We just never know when something will happen, and something will happen. We need to know what each other wants. Our children need to know what we want – I think the pandemic opens the door to that.
I’m writing and have been making videos, and I will be encouraging people in one of my next ones to talk to their family members (if they haven’t already) about what they want and about making advanced care directives, because it’s really important. Family members having to say “I just don’t know what Mom would want” is a mistake that doesn’t have to happen.
I feel optimistic about these things, and optimism in the face of a pandemic is in short supply. I’m optimistic around that sense that we’re all in this together, which we began this pandemic with. Our Prime Minister stressed this idea every day in his talks, and other people did as well. I think there has been significant pulling together around a sense of community and caring for one another. I’ve experienced this in my own neighbourhood – people who never normally talked to one another are checking in. When you go for a walk, people ask how you are doing and it’s genuine. I think that’s a strangely positive thing that is a result of the pandemic. I hope that it lasts, that people are doing things for elderly neighbours and that they’re more aware of who might be in need of help on their street. Anything that increases a sense of community I think is a great thing.
You touch on this point in your video “Expanding Our ‘Bubbles,’”5 on feeling reassured in many ways by this sentiment that we’re all in this together, though you also note that it has become increasingly apparent that we’re not all in the same boat. We might all be in it together, but the way we’re experiencing it varies greatly, whether it’s higher risk among seniors and other groups.6 Could you elaborate?
When you look at the breakdown of the areas that are still COVID hotspots, it’s where there are people living in poverty, people of colour, people who are working high-risk jobs in health care and in the service sector, and people living in large numbers together because they might not be able to afford anything else. Significant outbreaks among migrant workers employed in agricultural work and workers in food processing plants also demonstrate the impact of inequalities in our society on people’s vulnerability in the pandemic.
Another important way in which people haven’t been in it all together has been in families’ inability to have funerals, wakes, services or celebrations of life during the pandemic. I think this is having a huge impact on those who aren’t able to mark the death of a loved one with friends and family. There have been many families who couldn’t have a service of any kind, who couldn’t hug, who couldn’t get together beyond small groups. I just wonder what happens to that grief.
Many of those people who died, died alone. People in long-term care facilities and in hospitals have died alone. None of us wants that to happen. None of us wants it to happen to the people we love, and we don’t want to have it happen to us. It is an important tenet of hospice palliative care: let no one die alone. That this has been happening on a huge scale for the families left behind, it means enormous grief and guilt, feeling that “I couldn’t be there for Mom” or “I couldn’t be there with Mom when she was dying.” That’s heartbreaking. I don’t know what people do with that; you kind of have to push it down. I think about how all the obituaries say, “When it’s possible, we’ll have a service.” It’s hard for me to imagine all those services and where they’ll happen and whether that will provide the closure and support that people need. I certainly haven’t seen anything like that in my lifetime.
What gives you hope going forward?
I think about these questions: What do we want when we die? But also, what do we want as we grow older? What do we need to support us in that? How are we dealing, in general, with aging and dementia? What do we hope for? How can we create places that are very different from long-term care homes? How can we make that happen?
Katherine Arnup, PhD, is a writer, speaker and life coach specializing in transitions, and a retired Carleton University professor. Author of Family Perspectives: Death and Dying in Canada (and several books, including “I Don’t Have Time for This!”: A Compassionate Guide to Caring for Your Parents and Yourself and Education for Motherhood, she has pioneered studies on family experiences and provided unique insights into family life throughout her career.
Gaby Novoa is responsible for Communications at the Vanier Institute of the Family.
This interview has been edited for length, flow and clarity.
- Katherine Arnup, PhD, Family Perspectives: Death and Dying in Canada, The Vanier Institute of the Family (May 2018).
- Canadian Institute for Health Information, “Pandemic Experience in the Long-Term Care Sector: How Does Canada Compare with Other Countries?” CIHI (June 25, 2020). Link: https://bit.ly/3hGl4bc.
- Canadian Armed Forces, “Op LASER – JTFC Observations in Long Term Care Facilities in Ontario,” CAF (May 20, 2020). Link: https://bit.ly/2CJPnit.
- Pat Armstrong is a Distinguished Research Professor in Sociology at York University and a Fellow of the Royal Society of Canada. Link: https://bit.ly/3g3XSDn.
- Katherine Arnup, “Expanding Our ‘Bubbles,’” (YouTube). Link: https://bit.ly/2X15sqE.
- In Family Perspectives: Death and Dying in Canada, Arnup writes that experiences of death and dying are affected by factors of gender, race, class, ethnicity, geography, marginalized status, ability, sexual and gender identity, marital status and Indigenous, First Nation, Inuit and Métis status.