The Current - Jane Darville reflects on making a difference for those who were dying

Episode Date: January 21, 2026

Jane Darville helped create the hospice Casey House and then went on to be its Executive Director.  She was there when Princess Diane visited and made sure that day was smooth for the residents and the royalty. Darville later ran Canuck Place, the children's hospice in Vancouver.  As she is honoured with the Order of Canada, Jane reflects on the achievements in her career.

All right, picture this as your childhood. You live in New York. Your dad is a famous jazz musician and you have your own TV show. That was the life of Nat and Alex Wolfe. They grew up starring in a show called The Naked Brothers Band. On Q with Tom Power, Nat and Alex Wolf will tell you how the fame they experienced wasn't always pretty and how they're reflecting on this unusual life for their new record. I'm Tali O'SLenger, guest hosting while Tom is away. You can hear that conversation with Nat and Alex Wolf on cue with Tom Power wherever you get your podcast. This is a CBC podcast. Hello, I'm Matt Galloway, and this is the current podcast. We have been spending some time at the beginning of this year, speaking with remarkable Canadians who are now recipients in this country's highest civilian honor, the order of Canada, and two of them join me today. First, we go back to the early 1980s. That was a time when most people knew little to nothing about AIDS.

For those who contracted the disease, it was often seen. as a death sentence. There was a lot of fear and stigma around it. Here in Canada, the late, great activist and journalist June Colwood brought together a group to create Casey House in Toronto. This was a hospice where people could live and die with dignity. My next guest was a founding board member for Casey House. It's executive director for four years. Jane Darville then went on to run Canuck Place, Vancouver's hospice for children. And now Jane Darville has been recognized with the Order of Canada. Jane, good morning. Good morning.

Congratulations. Thank you very much. What does it mean to you? This is the highest civilian honor in Canada. It is. It means a lot, actually. I never thought I would ever achieve an honor like this. But you never know.

A little kid from Eagle Place in Brantford, it can happen. It happens because of the work that you have done. And let's talk about that work. Describe what Casey House is. Well, originally, Casey House was a hospice for people with AIDS. At the time, it opened in 1988. I had been involved for a few years before that on the steering committee and the original board. And at that time, people were really afraid of AIDS.

Terrified. Terrified. And a lot of medical people were. You know, they didn't know really what was going on. There weren't a lot of medications to help. The people, as we called them residents, who came into the hospice, would die in the hospice within a short period of time because there was no treatment in it. AIDS ravaged the body. So it was difficult at first. People didn't want to support Casey House and the treatments were limited.

That subsequently changed, which is a good thing. So people are living longer. Casey House now says that it treats people with AIDS and those who are at threat of HIV AIDS, you know, vulnerable people out in the community. How did you get involved with it? I mentioned June Calwood. Yeah. I mean, anybody who knew her, she was a first person.

force. She was one of those people that if you started talking to her, there was a good chance at the end of the conversation that you would agree to do something. You didn't even know that you had agreed. You would agree to do something that she had suggested. Yeah. No, at the time, when I got involved on the steering committee, I was working for Metro Home Care and we had decided that we needed to help in whatever way we could to bring some of these patients out into the community, even though they needed massive help and care. The CEO of home care at the time said, you know, on my watch, we're going to do something. So, sort it out, Jane. So I had been asked or invited to go to a meeting of this group that we're thinking of a hospice for people with AIDS. Well, as you said, you know, you meet with June

and you're talking, you're in for the long game. You know, I mean, I thought I was going to one meeting. You know, three years later, I'm still going to meetings and I'm there at 10 o'clock at night. She was like that. She just assumed that you wanted to. to help if you were there. Now, why did you want to help? Well, I wanted to help because I knew some of the things that were going on. But, you know, I've never been afraid of anything. And I wasn't afraid of people with AIDS for whatever reason.

There were a lot of people who were at that time. Absolutely, there were. And it was a great need, which is why June got involved. You know, I just needed to do it. I just needed to do it. I wanted to, in whatever way, which was not really directly clinical, because that wasn't sort of me. I was more an administrator. But I wanted to know that what I did made a difference in someone's life, however short it would be.

What do you think you gave them? You know, I think my role as an administrator was keeping things calm so that the people who did the direct care could actually do the care. The staff were laser focused on the mission and what they were doing. Being on a board at that time of an organization that is supporting gay men dying from a disease that people didn't understand, some people didn't even acknowledge. What sort of heat did you face from members of the public? I mean, that was a tough time. It was a tough time. Actually, friends now say to me, you were really courageous, actually, you and the other people who got involved early.

I never thought of it as courage, but maybe in retrospect that is in fact the case. Yeah, no, we faced a lot of heat, particularly the first year that we were open. The stigma and the homophobia continued for quite a while. And it was very hard to raise money and in some cases even to get staff. But as time evolved, it became easier, I must say. It's never been easy. the current Casey House still has issues with, you know, stigma and phobia and anti-addiction and all that sort of stuff. But it got easier to raise money.

You know, the arts community stepped up because there were a lot of men in the arts community who were HIV positive. They were losing people. They were losing people every day. Absolutely. So they stepped up and helped a lot with the renovations to the old Casey House. So slowly it changed. but, you know, it still is there. A huge signpost of that change was in 1991, your executive director.

Princess Diana shows up the cases. Princess Diana showed up. People have seen these photos. Oh, I know. I remember. I am of the age in which I remember when that happened. But how did that happen and describe what you remember about that visit? That was a monumental moment.

It was a monumental moment. It was quite exciting to hear it, actually, that she would be coming because, you know, she was already starting to make a name for herself in the, AIDS world, there is a hospice in London called Lighthouse, and she would often go there. And we had somewhat developed a connection with Lighthouse. And so we had to figure out how to tell the residents, because first of all, you couldn't tell anyone until the itinerary was released by the palace. But one of the challenges was because a resident who might be there on Monday may not be there on Friday, we had to really gauge when we could tell people. I'll tell you,

there were some really sick men in there at that time. But they struggled to stay alive. They just struggled. And they did. I mentioned the photos. And the photos are remarkable because you see her, she sits down with the residents. But she also takes their hands. Takes her hand.

At a time when, as you said, people were afraid of those who were living with AIDS and afraid of those who worked with people who were living with AIDS. Oh, yeah, yeah. And, you know, she came in in her regular sort of, clothes, so to speak, nice clothes. You know, she didn't have any gloves on. She didn't ask for a gown or something. Nothing. And she went room by room, would sit on the bed, take their hand. And there was one particular resident who was so emaciated and had visible composies. And she just sat down. And, you know, she knew about AIDS. And she knew the medications that were available at

that time. She knew how that would make them feel. She knew the questions to ask. And in a couple of cases, it was older residents who had been married and had family and their daughters were there. It was really quite touching. And she obviously ended up staying a bit longer than planned. It was a really exciting day for everybody. And because it was so visible and she's so prominent, it did make a substantial change in how people thought about it. Absolutely. The conversation. Absolutely. Yeah. Yeah. That's just part of the work that you've done. I mean, that would be a career enough.

But then you go on to become the executive director of Canuck Place in Vancouver. Describe for people who don't know what is Canuck Place? Canuck Place is a hospice for children. And it was the first freestanding hospice for children in Canada for a long time. You said something earlier about how you're not afraid. Working in a hospice for children would be harrowing work. How did you approach that? Well, I mean, I guess it helped that I was an administrator for another hospice, albeit not children.

And I didn't know much about pediatric palliative care. I was in the adult world. And there were syndromes that these kids had genetic or otherwise that I had never heard of. But how did I approach it? I'll tell you, you just take every day at a time. And hospices, just by their nature, they're very intimate places to work. You know, you cannot avoid. what's going on with the patient or the resident or the family.

And particularly at Canuck Place, we had a big sort of dining room in the center where parents could, if they were there, come and have lunch and, you know, staff would be there having lunch. So, you know, if I went in to have lunch, you know, I could end up sitting with a parent. So, you know, it was front and center. And these parents were pretty traumatized. Yeah. What did you, I mean, I asked you what you thought you were able to give to the residence and their families at Casey House. What did you see as your role at Canuckas?

What was your purpose there? What were you able to give them? Well, my first purpose was to keep the place open because it was under a bit of stress. And again, I think the other purpose was keeping the place steady so people could go about either being with their child and staff could go about doing their work. You know, second to making sure that the children,

or if we're talking, Canuck Place, are taken care of and they feel safe there. Because there's a lot of tricky symptom management, actually, that went on with these kids. It wasn't like you were just sitting around holding their hands. But also just heartbreak. It's heartbreaking. And so families got to know each other. So everyone was heartbroken when someone died. But, you know, you needed to make sure you took care of staff.

And they needed to know that they could trust you and that they could rely on you. Absolutely. What about taking care of yourself? These are two jobs where you bring it home. You bring it home. How did you take care of yourself in doing that work? Well, sometimes it was hard. You know, there was no science to it.

I guess it was a bit harder when I was at Casey House because I lived alone. At Canuck Place, I had a partner husband. And he was incredibly supportive, so that helped. You just talk it out with friends sometimes and talk it out with the people that you work with. at Casey House for the first couple of years that I was there. We still had a social worker therapist who came in. It was sort of support the caregiver. She was great, Mary.

We didn't have that at Kinnock Place, but the team was pretty close. You know, we had social workers. There was a minister. So the staff was really helpful to each other. But no, it's hard, and you do take it home, and you have sleepless nights. Why do you think this is the work that has shaped your life? You know, I often think about that. You know, in health care, people are attracted to different components.

Some are attracted to neurology or kidney disease. I was always attracted to palliative care, even when I was a visiting nurse way back in the 70s. And I think part of that was due to the fact that, you know, my father died when I was very young. I was three. And that was probably, I don't know, some psychiatrists could say that was the beginning of it, right? It probably was the beginning of it.

And it wasn't that I always worked with a palliative care organization, but it was where I sort of fit. And I had thought when I left Casey House, I thought, well, I don't think I'll work, had another hospice, I don't know. But as it turned out, I did. And when I went in for my interview, I knew as soon as I walked through the doors of that hospice, I was going to to take that job if it was offered. Strange, eh? The choices you've made have made a huge difference in people's lives. I think so.

That's why you're being recognized. Congratulations on this. And thank you for what you've done. Thank you very much. Jane Darville is the former executive director of Casey House and Canuck Place and a newly appointed member of the Order of Canada. This has been the current podcast. You can hear our show Monday to Friday on CBC Radio 1 at 8.30 a.m. at all time zones. or you can also listen online at cbc.ca.ca.ca slash the current or on the CBC Listen app or wherever you get your podcasts.

My name is Matt Galloway. Thanks for listening. For more CBC podcasts, go to cbc.ca.ca slash podcasts.