What Ontario knew, Part 3: The long-term-care association

TVO.org speaks with Donna Duncan, CEO of the Ontario Long Term Care Association about stigma, critical staffing shortages — and what LTC should “look like, feel like, and be”
By Matt Gurney - Published on Jun 05, 2020
The Ontario Long Term Care Association represents nearly 70 per cent of Ontario's 630 LTC homes. (iStock/taikrixel)

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This is the third instalment in a series looking at what was known about the state of long-term care in Ontario prior to the pandemic. Read Part 2 here; watch for Part 4 tomorrow.

The COVID-19 pandemic has ravaged Ontario’s long-term-care homes. The majority of the province’s pandemic deaths have occurred in these institutions, where conditions became so dire the province was forced to call on the Canadian Armed Forces for desperately needed help. Those soldiers, in turn, observed conditions so appalling that a report was transmitted back to National Defence headquarters in Ottawa — a report so bleak that Premier Doug Ford has said reading it was the hardest moment of his time in office. The provincial government has pledged an independent commission to look into the LTC system; the provincial ombudsman has begun its own investigation. But Ontario’s LTC system has been extensively studied for years. The problems that made the pandemic so devastating had not been unknown. This week, TVO.org will catalogue just a few of the reports, papers, and other warnings regarding the state of our LTC system that were issued before the pandemic — and that we could have acted on. Today: Donna Duncan, CEO of the Ontario Long Term Care Association.

Matt Gurney: Donna, obviously, first, thanks for doing this. Second, I want to mention something right off the top that’s come out of every one of these interviews so far. You’re the third I’ve done. And both earlier interviews had some variation on this: I get in touch with an organization or an author because of a specific report or paper or presentation they’d done on challenges in our long-term-care system. And they immediately tell me, if you liked this one, you’ll like all these other ones we have, too. And I shouldn’t laugh about something that’s so serious. Literally life and death. But I found a report you guys had done, from 2018, about standards of care and staffing challenges, but then I clicked back through the tab on your website, and my God. There were so many reports. Dozens. And all reasonably recent.

Donna Duncan: The Registered Nurses’ Association of Ontario is actually compiling a list of all those reports. Doris Grinspun is working on that. [Editor’s note: Grinspun was interviewed for Part 2 of this series.] If you look at the patient ombudsman, there’s an inquiry there now. Endless auditors-general reports. I’m fairly new to the long-term-care sector. I spent the better part of 20 years in mental health. I was at the Centre for Addiction and Mental Health. And then I ran a children's mental-health agency, and I thought that the mental-health system was pretty intense.

But to come in and look at all the reports as I was taking on this role and bringing some fresh eyes to it, it’s daunting. Look at the condition of some of these buildings. Look at the people who are in these homes and the critical staffing shortages and the stigma around the staff. If we know what the problems are, how is there an inability to act?

When I was in the mental-health sector in 2016-17, I had the privilege of working with Dr. Jane Philpott during consultations for the renegotiation of the health accords with the provinces. Mental health and home care were front and centre and got earmarked as part of that process. No one thought about long-term care. But if you go back to the reports from our association, to the auditor general, the various inquests and reviews, the different consultations governments have done, in Ontario and elsewhere, it’s curious to me that anyone can suggest today we didn’t know what these issues were.

Gurney: I want to ask you something, a kind of blended personal/professional question. You said you were in mental-health services for about 20 years. And that’s also something that’s generally not well understood and has a lot of stigma. Now you’ve moved into long-term care, and you’re amazed at how little the issue is understood despite all the evidence. Why do you think that is such a blindspot? My family, we didn’t know anything about the system until my grandfather’s Alzheimer’s deteriorated to the point where he was having violent outbursts and we had to put him into LTC, and we had to learn the system on the fly. We knew so little about these facilities that we lived near to. Why? And I’m not asking you even as a policy matter here, but is this a moral failing? A societal one? Cultural?

Duncan: I think that’s a great question. I don’t know. And my dad had Alzheimer’s. And he passed away in long-term care. Our families have lived the same experience. And I’ll tell you, when my mom and I toured the nearby homes, we cried at every one. And the best part of that day was when we went to a funeral home to pre-plan the funeral arrangements. The funeral home was the high point. That was in 2003. It’s heartbreaking.

What really strikes me is that there are a lot of parallels between mental health and long-term care. And first and foremost is stigma. People feel guilty for putting their loved ones in long-term care. There's this tension in Ontario over what the long-term-care system is — is it the home, or is it the care model? You probably remember when George Smitherman was crying on the front page of the Toronto Star after some investigative pieces about alleged abuse in long-term care. There was a crackdown. So our model in Ontario is circa 2003, responding to issues in a number of homes at that time, and so it never got an opportunity to evolve within the context of the broader health-care system.

When you're building a hospital program, what should happen is you say, who's the patient — or, in our case, the residents — and what are their needs? What are the issues that we're going to treat, and what's the staffing model or what kind of equipment will we actually need to get the best possible outcomes? And then what are the desired outcomes? And then what does the physical space need to look like to deliver that? And what does the funding look like?

That’s how we should design it. But that’s not what we did. Essentially, what we have here is a model that's been squeezed out of the money we have and then overlaid with a very restrictive legislative framework that never contemplated change in scope of practice of nurses, for instance. It certainly didn't contemplate a pandemic and actually locked us in with a model designed for a time with a resident population that is actually very different than today. There was a rush to legislate. But there are different ways to embed accountability into a system.

Gurney: But none of that happened. And the system was struggling, and then the pandemic hit.

Duncan: We saw the danger in this right away. We were already so desperately short staff. And now we are down thousands — thousands of our workers are not coming in. And I don’t know if we’ll get them back.

Gurney: My first interview for this series was about the problem of violence against care workers in the system. My second interview was about how hard it is to care for the patents and how frustrated the staff are. And both of those things were before the infectious viral pandemic hit. I don’t know if they’ll come back either.

Duncan: Certainly, this past week, I've been getting emails from our members where they say they’re going to quit. There’s too much stress and stigma in this sector. What are we going to do? The military is going to leave in a couple of weeks. Staff we’ve had from hospitals helped, but the hospitals are ramping up, so they have to go back to their normal jobs. We have volunteers in some of these homes as well. How can we mobilize, quickly, to be ready for this?

And how do we make some urgent changes, now, to make it safer? A lot of our homes have four patients to a room. We’ve mapped out what that would mean if we said only two to a room. That takes 10,000 beds out of the system. And there are 36,000 people on waiting lists to get in. So we have to look for alternate accommodation even just to get us through the next few years while we rebuild. We’ll need new facilities, but it takes years to get a new building.

Gurney: Sorry to jump in here, but I want to ask you something about that. Obviously, in Ontario, we are terrible at building stuff. But let’s pretend, for the sake of argument, that we throw up some field hospitals or we convert buildings or we somehow pull off rapid construction of facilities that we can use for long-term care. What about the people? Human beings? Do we have enough slack in our system to dramatically expand if we had the budget? Or, if we don’t, could our colleges graduate enough to make up the difference, in, say, a year or two? Would we run out of nurses before we ran out of beds?

Duncan: We’d need to ask ourselves, what people do we need? What are the skills and competencies? What role would physicians play? What about nurses? What about nurse practitioners and personal-support workers?

During this crisis, we developed with Seneca College a job-matching platform. Also, with the authority of the special orders, we created a new role — a resident assistant or health assistant. They’re not as trained as a personal-support worker but can help with lots of things. They can push wheelchairs and help with screening. We need to step back and ask what a more holistic team is.

But, also, there are millions of people who don’t have jobs in Ontario today who had jobs two months ago. Entire sectors have imploded. And we can recruit some of the skills we need. People with hotel-industry experience can help us in the facilities. Food-service-industry workers or people who worked in the restaurant business — well, their employers are gone. But these people have food-handling skills. How do we train them to get them into long-term-care homes?

I was talking to colleagues in a hospital the other day, and I asked them, how long to train someone in infection control? How long to get them certified as a specialist who could work in long-term care? They said three months. So — June, July, August. We could have them ready by September. We could train an army of infection-prevention and -control specialists. We have 626 homes in Ontario. Let’s train a thousand new infection specialists for communities across the province. And we can do it by September. They could be supervised out of the local hospitals.

This is all about the art of the possible. We can’t be bogged down with “if” — we have to problem-solve for “how.” What virtual-care options can we use? We now have virtual nursing support available 24/7. Physicians are doing more telemedicine. We need more presence and to strengthen the role of our medical directors and develop our accountability. But I’m an optimist. I think we can do a lot, and we can do it quickly. We’ve had to pivot for a crisis, but let’s not slow down now to study everything. We have action plans for PPE, for staff, for rapid testing. We need enhanced medical oversight and infection control. But we can do this. With testing, oversight, and better partnerships with our hospitals, I think people will feel safe to come in again.

And then we have to make these places places where people want to work and live. Where they feel supported. Where families feel won’t feel terrible, either. We have to focus on safety — and not just for COVID-19.

Gurney: We’ve talked in very big-picture terms about the future. Let’s talk about three months ago. COVID had jumped from Wuhan to the Middle East to Europe. It was devastating northern Italy. And we knew it was in North America. What were you guys doing then?

Duncan: PPE. Personal protective equipment. We had seen already in China and Italy that they were running out. There was a global race to find some, but you know where it’s made?

Gurney: I do now. China.

Duncan: Wuhan, specifically.

Gurney: 2020 has not lacked irony.

Duncan: [laughs] That’s right. So our PPE supplies came from China. And they weren’t exporting. So it was a global race to get supplies of PPE. Hospitals were prioritized. I was very worried and quite terrified about what was going to happen if there was a hospital surge in Ontario.

I don’t know where we’d be if there had been, but we avoided that. The government was able to launch an action plan and redeploy hospital resources and other resources into long-term care in mid April. Knowing that we already had a staffing shortage, and so much fear, because our staff was watching the coverage of Spain and Italy … it was terrifying. They were terrified for their families too — worrying that they’d catch it at work and bring it home. When the first cases came into our long-term-care homes, quite honestly, overnight the fear and anxiety soared. We tried to keep this thing out, but then as soon as they first got a first positive case, 80 per cent of your staff could walk away. In the homes where the military went in, where it was most dire, 20 per cent of our staff were left. And they called for help, but, honestly, no help came until the military came in.

Gurney: Why didn’t it?

Duncan: Risk and fear. Even hospital staff wouldn’t go in. People were horrified and afraid. I can’t imagine the fear and trauma for the staff who stayed the whole time. There’s zero tolerance for abuse or neglect. But can you imagine being at work in a pandemic when 80 per cent of your colleagues won’t come in because they’re afraid? And you’re just trying to hold it all together. I can’t imagine.

Gurney: About the PPE. A lot of the issues here were known issues. That’s why we’re talking — looking at the reports and pointing out how much of this wasn’t just predictable, but predicted, known weaknesses. But PPE seems to have been off the radar because it wasn’t a problem until everyone needed it at once, everywhere in the world.

Duncan: Homes would have a pandemic supply and a supply for outbreaks. Part of the challenge in long-term care is that COVID hit when flu season had already started, so these homes had already been burning through their supply. That was a big disadvantage. And we have learned a lot about this virus since then. We’ve only been dealing with COVID since January. We have a whole new lexicon now, but guidance kept changing. Who should wear a mask? When? What kind of mask? It changed constantly. Now we have to do universal masking. Our testing protocols kept changing, too. Asymptomatic spread was something else — we were only looking for symptoms, and a very narrow set of symptoms, in February. And now, you know, the symptomatology is vast.

Gurney: So PPE. Staffing. Funding. The burden of bureaucratic oversight — forms for everything taking up valuable time that could be hands-on with residents. These are the issues that crop up time and again in the reports and also the interviews I’m doing. Is there anything else that you think needs to be in the mix?

Duncan: The long-term-care system is built like a tower of Jenga blocks. We keep pulling out pieces and then adding new stuff atop the existing structure. It’s not a surprise it ends up being precarious. Questions I'm getting from other reporters, and as governments are thinking about these things, are still along those lines: Do we need to add on another two hours of care? Do we need to add on this or that other thing? We have structural problems, and putting another piece on top of the tower as a Band-Aid is not going to fix it.

Let's shore things up today. We need to get through the next few years. But then we have to ask ourselves, who are our residents? What do they need? Instead of randomly putting hours of care around somebody, can we keep some of the pieces we’ve seen emerge where we're starting to get organic integration and organic enhancements around long-term care? Let’s start thinking about these pieces as part of the model of care. So that's the virtual support, the physician support, and, clearly, enhanced nursing is going to be a big part. We must really think about what the clinical needs are of the residents within the context of that whole.

And we need to have bigger questions, ultimately, around what long-term care is. We need a great sense of the destination. Put a stake in the ground and say, this is what it should look like, feel like, and be. And then look at the pieces we have now and start putting them together on a stable foundation to get to that better place.

Gurney: I’m going to do the annoying journalist thing — what is the destination? What should it look like, feel like, and be?

Duncan: I think as we go through the upcoming inquiries, we need to figure out how to adjust the culture of long-term care. We were able to adjust our culture when I worked in mental-health care. It took eight years, and it started with a vision and a strategy. We had to take our vision and tone and approach and embed it into the culture of the organization and how you engage your teams and support your team. We focused on quality improvements and better outcomes, so it's not about volumes. It's validating your staff, making it safe to make mistakes, and learning from the mistakes.

It's a whole different tone and approach. Currently, the way the legislation of licensing works in Ontario — which I find quite remarkable because I've been through lots of inspections under the Children’s Mental Health Act — but, if you look at inspection reports, you can only fail in long-term care. Everything is a failure. If you swap out pineapple for green Jello for dessert, you fail. You have failed to meet your dietary plan. If a nurse has a crisis happening and she's trying to respond and has to deal in the moment with a resident that needs immediate care, if she doesn't change the plan of care before responding to that emergency, she's failed. So that approach has to change. There's a big cultural element here that I think Justice Eileen Gilesse touched on in the Elizabeth Wettlaufer inquiry. But what will it take to get to that better culture?

When I first went to CAMH, we had old buildings. I have a relative in eastern Ontario with a mental illness, and she asked for referral, and I said no way. Absolutely not. I don’t want you here in these facilities. But look at the buildings now. Go into them today. The new buildings show respect. There’s sunshine. They’re lovely and modern, not cinder-block rooms. The look and feel of long-term care has to be very different from the 1970s feel we have now.

Gurney: I guess my last question is this: While we work on getting the system there, how is it today? How is morale? I don’t mean in the facilities. Obviously, there is fear and anger there. I mean among the administrators and the high-level professionals in the industry.

Duncan: It’s horrific. We saw this coming. We asked for help. But people didn’t listen. It took this, a pandemic, to get help. That’s tragic. The entire sector feels beaten down. We did before. And this has made it worse. That’s why some people stopped coming in. And everyone else is just trying to do what they can. But it’s hard.

This interview has been condensed and edited for length and clarity.

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