Jane Philpott on COVID’S front lines felt helpless before — in famine-struck niger.
Former mp a front-line worker at participation house
The texts started at 7: 30 a. m. on Easter Sunday. They were from an old friend. “Shelley really needs your help,” the first one said. “Can she call you?” Dr. Jane Philpott had other plans that morning. They involved chocolate and eggs and acting as the Easter Bunny. But by 8: 30 she was on the phone. And by 9 a.m. she was getting dressed. “As you may know, I’m kind of between jobs,” said Philpott, a medical doctor and Canada’s former minister of health. “I said, ‘ You know what? I can drop everything else and I can come.’”
What Philpott saw that morning at Participation House in Markham, Ont., a home for adults with severe mental, physical and developmental disabilities, shook her like little else has in her long medical career. The only thing she could compare it to, through tears, was a famine she witnessed in Niger. “(It was) just the sense of people who, through no fault of their own, people who were highly vulnerable and dependent on caregivers, were plagued with this infection,” she said.
Forty of the 42 residents at Participation House have tested positive for COVID-19. Six have died. On the day Philpott arrived, the centre was down to just 10 staffers from a full cohort of more than 100. “It was sort of in this survival phase. It was in survival mode,” she said. “I saw people who were really worried amongst the staff. I saw residents who were really worried. You could see it in their eyes.”
Philpott has been working fulltime at Participation House ever since. She has nothing but praise for the staff there, for their dedication, for their professionalism, for the trauma they’ve absorbed and packaged away. But she still doesn’t think the wider public knows enough, or maybe cares enough, about the residents, not just at Participation House, but at centres like it all over the country. “I think Canadians would be shocked to realize how many facilities like this exist in their neighbourhoods,” she said.
The impact of COVID-19 on long- term care homes for the elderly has been horrific and well-documented. There is more and more coverage now of the dangers the disease poses in other congregate settings, such as prisons and shelters. But homes for disabled adults, as they so often are, largely have been left out of the conversation. “They’re places that society doesn’t pay a lot of attention to, either wilfully or because no one’s raised it to their attention,” Philpott said.
This week, Philpott spoke to the National Post, along with Shelley Brillinger, the executive director of Participation House, about what they’ve seen in the past month, what the residents and the staff have endured, and what they need now.
Their comments have been edited for space, grammar and clarity.
Philpott: Participation House is a beautiful place where 42 adults with pretty serious intellectual, physical and developmental disabilities have made their home. Some of them have lived here for 20, 30, 40 years, and they require very high amounts of care. And unfortunately when the infection gets into a place like this, it can spread fairly easily. It was hugely challenging in the early days just because so many staff had to go home. It was a great challenge to be able to quickly recruit almost an entirely new staff to provide the ongoing care these residents need.
Brillinger: Just simply on its face, people probably liken us to long- term care when they hear that we’re a group home. But our residents have some of the highest needs in society. Out of our entire population, 42 individuals, we only have four residents that can walk. Everyone else is in a full lift. They require full bathing. In another group home, you may have someone who could stand outside the door and coach them. That’s not the level of care we provide. They can’t feed themselves. They’re literally waiting with the food in front of them for someone to put it in their mouths. So when we were faced with a lack of staffing in those early days, it was a true panic because each person requires such a high level of one-toone personal care.
Philpott: When things reached their peak, Shelley was down to about 10 people trying to care for 40 sick residents. It was a very frightening time for everyone. The residents knew that things had turned upside down overnight. Suddenly the people were who were caring for them were all wearing frightening- looking outfits. They were being cared for by strangers who didn’t understand them, who didn’t know their specific food preferences or the ways they like to get comfortable. So that was very destabilizing. The people who work here, that have worked here for 20 or 30 years, know these residents like their own family. But those were the staff that got sent home. It was a very fragile environment.
Brillinger: Many of the residents understand when something’s off or something’s not right or people are dressed looking like they’ve come from outer space with shields on their faces and masks on. There is no one here that it’s been lost on. And some are able to verbalize and some are able to say, “When will this be over? When will this be over?” Because they’re in their rooms, on their own, in isolation. They’ve been in their rooms for weeks and it’s just very disorienting.
Philpott: I’ve worked in some really, really, hard places. I often think now about … sorry … I’m going to ... ( she paused and began to speak through tears). I think probably one of the hardest places I ever worked was the Republic of Niger. In 2005, I went to Niger when there was a very severe food shortage and famine. And there were toddlers that were dying. And I would watch little babies die in front of me from hunger. And I would say this would be comparably as difficult in terms of just the sense of people who, through no fault of their own, people who were highly vulnerable and dependent on caregivers, were plagued with this infection. And the look of fear in the eyes of some of the residents — they knew they were sick and they knew they were dependent.
I was worried about them and I knew that the staff here was very worried about them. But there was a sense of helplessness because there’s no cure for COVID. We could give people oxygen and we could get their fever under control. But you really felt like your tools for helping people survive this were very limited.
Brillinger: I think for a lot of our staff, especially those that have been here day and night, there’s a lot of boxing of emotions right now. We just say we’ll put that in a box and we’ll deal with it later. And one of our nurses said to me the other night, “Shelley, there’s so many boxes.” And I said, ‘I know.
Philpott: It’s going to be really hard for them when they open those boxes. Shelley showed me a picture Monday morning of the binders, the charts essentially, of the residents who have died. And it’s a pretty high stack now. They’ve sort of been set aside because nobody will be writing in them any more. And, you sort of wonder, how many more charts will be added to that pile? And those are people’s lives. One of the gentlemen who died had been here for 40 years. This was his home for 40 years. The grief that the staff who know these people will go through, the trauma of losing so many of their loved ones in so short a period of time, it will go on for the rest of their lives.
One of the gentlemen who died
had been here for 40 years.
Brillinger: People have said to me, “Shelley, I imagine this is what war does to a person.” And, it sounds extreme, but it’s really not.
Philpott: What we need now is stability. We’re still in outbreak. But we’re hoping things are going to stabilize in the coming days and that a couple of weeks from now we’ll be to able to lift the outbreak precautions and get the place back to where the residents can come out of their rooms, can move around, can go outdoors and see the sunshine and get some fresh air again.
Brillinger: To be honest, at this point, it feels like a calling. I think Jane probably feels the same way. It’s not up for negotiation. The only way out is through. I think there’s sunshine coming. We just have to have faith that we’ll get to the other side.