The home stretch, Part 4: How do we fix long-term care?

TVO.org speaks with University of Waterloo professor John Hirdes about immediate and long-term challenges — and why all involved in LTC should be vaccinated
By Matt Gurney - Published on Jul 22, 2021
John Hirdes is a professor at the School of Public Health Sciences at the University of Waterloo. (YouTube/University of Waterloo Faculty of Health)

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This is the fourth instalment in a multi-part series. Read Part 3 here; watch for Part 5 on Friday.

Sometime in the next few weeks, Ontario’s vaccination campaign will be essentially complete. It will not end, because there will be stragglers and new people aging into eligibility. But the main effort is only weeks away from completion. We will move into what military commanders would call the “mopping up” phase — the main fighting will be over, even if some skirmishes continue for some time.

This may not represent a final victory — we will need to remain vigilant against new variants that may defeat our vaccines. For now, at least, a return to something much more like normal is possible. Only time will tell what that new normal looks like, and that’s a topic for future analysis. The challenge (and opportunity) before us right now is different: What does this next phase look like? These coming weeks and months? What should we do right now, as we exit this long crisis?

In the coming days, TVO.org will present interviews with a variety of experts who were all asked some variation of this question: What happens next in your field, and what must we do immediately?

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Today: John Hirdes, a professor at the School of Public Health Sciences at the University of Waterloo and an expert in elder care.

Matt Gurney: Let’s look at the next few months. We have a long-term-care system that has been devastated by this pandemic. It is obviously not in good shape. What do we need to do immediately to start righting the ship? 

John Hirdes: Well, the first thing I would do is put an asterisk beside your comment. I’m not sure about the fall yet at this point. I’m not sure we’re out of this. The variants are very much a concern. Overall, the vaccination rate is a concern, even if all we deal with is the Delta variant, let alone if some new variant comes along because of low vaccination rates elsewhere. 

But if we think about long-term care specifically, it doesn’t take much to get to the conclusion that there might be a 10 per cent population in the system among residents where either they’re not vaccinated or the vaccine has not been effective. If we allow people to come into long-term-care homes without ensuring that everybody going in — staff, visitors, volunteers, family members — is fully vaccinated, there’s a good chance we could see hundreds of deaths again in the fall. I would dearly love to be out of this. But I remember last July talking to my students, saying, you know, I think we’re going to be back on campus in September, and life will be good, and we’ll get back to some semblance of normal. And then we had two more waves — bigger ones. So I think everybody’s kind of holding their breath. With 10 per cent of people in LTCs still vulnerable, just to estimate, that would mean 7,000 people in the system are at risk.

Gurney: So that’s the first urgent prioritization — maximum vaccination for as many people as possible, and not just the residents. What else should we be doing with that kind of urgency? 

Hirdes: I think we need to look very closely at how we mobilize clinical resources to help nursing homes in trouble. Have you read the transcripts of the Long-Term-Care Commission?

Gurney: At the time, yes. I wrote about it here. But I obviously won’t have the familiarity that you do.

Hirdes: Go to the CIHI [Canadian Institute for Health Information] testimony. I was part of that. We did what I think is really authoritative research. When homes start to spiral out of control with staff absenteeism, either due to illness or fear, that’s very bad. It causes outbreaks. It causes large infection rates; it causes large-scale mortality. And so figuring out how we can stabilize staff resources is important. 

But one of the other things that we found that others haven’t reported is that, when the medical director is on site less than a day a week, they had higher mortality and higher risk of severe outbreaks in those homes. So I think we actually need to urgently revisit the model of medical services being provided to long-term-care homes, because we’ve kind of gone down this path in the last decade where we thought about long-term-care homes as the person’s home. We need to put in place a social model where everybody feels respected, that we’re sort of centred on the quality of life. All that is true. 

But it does not come at the expense of medical care. We need both a high-quality-of-life environment and a solid environment for broadening access to medical care. Long-term-care has become a much more medically complex environment than it ever was. I’ve been doing research in this area for almost 35 years now. And it’s a radically transformed sector. We now have the most complicated folks in those settings receiving 75 per cent of their care from PSWs [personal support workers], who do not have a lot of clinical training. On a good day, that doesn’t meet patient needs. In a pandemic? It didn’t work. And to be clear, I feel terrible for the PSWs. I’m not blaming them. They aren’t trained. They were stuck there, and some of the medical directors weren’t even on site.

Gurney: My grandfather spent his final few months in a long-term-care home. He had a really complicated and nasty course of Alzheimer’s. He was violent — he was gentle and kind before, but the disease changed his personality as it progressed. He needed really intense care in a controlled environment, and we got him into an LTC that was co-located with a large hospital. Different building but same campus. His LTC was right across the parking lot from the hospital; there was a tunnel that connected it to the medical centre. That was obviously great. But a ton of nursing homes and LTCs are just standalone facilities, right? From the outside, they look like most other apartment buildings — on their own properties, with their own parking lots, in the middle of normal neighbourhoods.

Hirdes: Right. When you’re adjacent to a complex-continuing-care hospital or an acute hospital site, you can mobilize those medical resources urgently. But it’s these isolated homes that are in maybe a rural community or on their own where they don’t have a link to hospital. They can’t mobilize those clinical resources. And they didn’t have the option to say, “Okay, we can’t handle this person anymore, so let’s discharge him to the acute hospital,” because the acute hospitals weren’t taking them. The signal that went to homes very early on in the pandemic was, you’re going to have to manage this on your own — whereas, in Ontario, the outlet historically has been a fairly high rate of transfer into hospital, compared to other provinces in the country. 

Gurney: You mentioned before how to find personnel. And when things got bad, in Ontario and Quebec, we turned to the reserve of last resort. We called in the military and used troops. We needed to throw every available person in, and that’s what we resorted to. But since then, and I’ll defer to your understanding of this, Ontario has linked all the LTCs with local hospitals, right? That can make sense in a city, maybe, where you’ve got lots of hospitals. But you just mentioned isolated homes in rural communities. You could have a huge number of far-flung homes all under the supervision of one small regional medical centre. 

Hirdes: Yep. Yep, absolutely. It’s a real challenge to have that kind of geriatric-care expertise outside major urban centres. Something to watch is a CIHI indicator of the percentage of people currently in long-term care who could have been cared for in home care. It’s only about 9 per cent. Those are people that could have been cared for at home … if they had a family willing to do 40 hours of personal care a week. So the LTC homes don’t have a light care population to speak of anymore. It’s a much more challenging environment. And that’s only going to get more pronounced over time as people find ways to stay in the community longer. One of the things that I was disturbed about during the pandemic was the idea that we should just take our residents out of long-term care and take care of them in the community. With in-home care, you get about 1/7 of the funding that’s attached to somebody being in long-term-care, and the expectation is that family members do three-quarters of the work. 

Gurney: [snorts] Sorry, John. I shouldn’t laugh. But I’m trying to imagine us trying to hold down my violent grandfather as he tries to barge out of the house to go to work. He’d been retired for decades but didn’t remember. He’d want to leave, and if you tried to stop him, he’d hit you. And there was no pandemic to worry about then, so we could have gone over and helped my grandmother. Couldn’t do that during COVID.

Hirdes: It’s a huge burden that we place on families. It’s unfair. 

Gurney: Short of calling in the infantry again, where can we get large reserves of personnel with medical training?

Hirdes: Some of that has to come from an adjustment of the model of care right away. We did staff-time measurement studies several years ago, in complex-continuing-care hospitals and nursing homes. In a long-term-care home, 75 per cent of the nursing care comes from a personal support worker; in a complex-continuing-care hospital, it’s only about 10 per cent. That’s a radically different model of care. And, so, in these homes, particularly the ones that were in trouble, you might have had a bunch of hands who were highly stressed because of other staff not being there, with maybe one nurse there to try to deal with an outbreak. We just need to boost those nursing levels right away. That’s not something that can wait. And it’s not just to deal with the future pandemic; it’s to deal with the medical needs of the residents today. Because if your relative happens to end up in a nursing home, compared to a complex-continuing-care hospital, they’re going to get a lot less real nursing care. They’ll get personal care, but they will not get the nursing care they would in a complex-care hospital.

Gurney: I did a bad journalism thing recently. [laughs] I tweeted something I should have saved for an article. It was how I don’t think people realize how easily we could hire many thousands of nurses, drop them into the province, and not actually make a whole ton of difference. The needs are so widespread and so complicated that you would just absorb thousands of new hires, and that would only really catch the system up to its current obligations. You wouldn’t add new capacity. I don’t know if there’s an easy answer, but when we talk about staffing models and whatnot, is this going to be a matter of finding efficiencies? Of better coordinating the sharing of resources? Or are we talking about a pretty literal build-out of our human resources here?

Hirdes: I don’t think the understaffing issue in long-term care is an issue of inefficiencies. It’s a razor-thin environment in terms of the revenue and the staffing that are there. I see it as a real budgetary change of adding additional clinical resources. You know, if all we did was add one nurse to the 750 homes in the province, that’s not thousands, but that would make a meaningful difference in the quality of care in those homes. No question.

Gurney: Let’s flip the script here a bit and be cheerful. After a year and a half of this, what have we gotten right that we should keep up with afterward?

Hirdes: I think one of the things that’s gone well, and it’s going to be a surprising statement, is that, despite the widespread outbreak of the pandemic across the province, the severe outbreaks were actually limited to a small number of homes. It’s a tragedy that we had the number of deaths that occurred, but it actually could have been a lot, lot worse. 

When you look at the homes that had lots of mortality, it’s 10 or 20 homes. The number should have been zero! But compared to what it could have been, it could have been much more catastrophic. A whole bunch of homes did heroic things to manage the health of their residents even with intense community spread. There’s a number that gets used a lot that is, in fact, an incorrect number to focus on. It’s that 81 per cent of the deaths in the first wave were deaths in long-term care, but that number actually doesn’t have a lot of meaning — because it reflects the severity of the mortality in the general population as well. And you need to know what the denominator is: What’s the count of people that died?

So in New Zealand, they had 26 deaths overall, and I think 20 of the deaths were in long-term care. That percentage is about the same, but no one would describe New Zealand’s experience as a catastrophe. What you want to know is the rate of deaths per the population at risk. Canada is kind of in the middle of that pack. And that’s the more informative number to take a look at to understand the scope of the problem overall.

Gurney: So we’re talking about some big-picture stuff here. What can we do fast? Like, God forbid, if we’re about to get clobbered again in the fall, what could we do between now and then to get the long-term-care system firmed up?

Hirdes: After the first wave, we fixed up a bunch of problems around personal protective equipment and infection-control procedures. At the start of the pandemic, we had a provincial official say that nursing homes did not need PPE[unless they had an outbreak]. I tweeted about it as soon as it happened. Of all the sectors, that’s where we did need PPE! Now, I think the supply issues there are worked out. And I think the infection-control protocols have gotten much better than they were. I think we are going to need to manage the people coming into the homes. People are desperate to avoid lockdowns again, because of the psychosocial consequences for that. But we have to have a protocol in place that nobody gets into that home if they are not fully vaccinated. And in that I would include staff, which is a difficult position to take. It’s not something that people want to hear. But, you know, you’ve mentioned your late grandfather. Would you have wanted him cared for during this by someone without a vaccine?

Gurney: No.

Hirdes: Yeah. And then the same applies to volunteers. And to family members. We need to have that protection in place. There will be residents who, for whatever reason, do not get vaccinated or cannot be vaccinated. And they live there. It’s their home. They don’t have a choice. So the only choice is to protect them by ensuring everybody else is vaccinated. Either that, or we go back to a lockdown environment for the LTCs, which people want to avoid. The other thing that we need to do urgently, that might have flown under your radar, is making some changes in our information systems. In the first three months of the pandemic, I couldn’t find out where outbreaks were happening, how many residents were affected.43 I actually was speaking to media reporters who were doing cold calls to homes to get that answer. That should be part of a public-health reporting system. Vaccination rates for staff should also be publicly reported, in my view.

One of the other things that was a bit of a challenge was the nature of our clinical-information system that we have in nursing homes right now. For more than a decade, every nursing-home resident gets assessed at admission and every three months thereafter with a very comprehensive clinical tool that my research team created. It’s used across the country; there have been millions of these assessments done. So we’re actually in a data-rich environment to understand the clinical characteristics of those folks. 

But the problem is the way the IT system is set up, we can only access those data up to October 2020. New Brunswick has moved to a newer version of that, which means they can get data in almost real time. So if we want to understand who’s dying in long-term care, in New Brunswick, I can do that within a week of the data being gathered. In Ontario, I have to wait for six months. We’re actually ahead of the world — other countries look to what we’re doing as where they want to get to. The problem is, we’ve got the data, but we couldn’t mobilize the data in real time to understand what was going on at the clinical level. And so I’ve now got multiple grants to use those data to understand what happened in the pandemic. But I was desperate to do that in June of last year, and in New Brunswick, we were able to publish a paper on the impact of the lockdown in New Brunswick homes within a month or two.

TVO Explainer: How do Ontario seniors live?

Gurney: In an honest-to-God emergency, like, just for instance, a wave of a deadly pandemic that’s particularly lethal to the elderly and in congregate-care settings, the ability to analyze data that’s a week old and data that’s six months old … I can’t even think of how to describe that.

Hirdes: Yeah. Yeah. And, so, you know, all the systems are in place, CIHI nationally actually has a mechanism set up to do that: near real-time data reporting. We just need to get Ontario to move to that. And they’ve talked about it for the last 10 years, but it just hasn’t been done.

Gurney: Let’s lift our eyes a bit from the fall or even the next few months. Let’s look further ahead to years. What needs to happen?

Hirdes: Better clinical resources in the sector are critical. That by far was one of the biggest things that is a big-ticket item in terms of the cost to the system overall. There’s no getting around that. And it has to happen. The other things, like the improvements in the information system, there’s incremental improvement happening there. But the big unanswered question is how we’re going to find the money to boost the resources for clinical care.

At YourHealthSystem.cihi.ca, you can go to any nursing home in Ontario and pull out tons of information. You can get information about their resident composition, about their performance with respect to pressure ulcers, restraints, use of anti-psychotics, depression, behavioral issues, cognitive decline. And you can see how they compare with 1,500 organizations across the country. That puts us as leaders in the world, actually, on that side of things. We’ve already got the tools there; we just don’t really use them. Inspectors don’t really consult that as part of routine practice.

Gurney: In another interview, I asked Anthony Dale of the OHA if we just need to bite the bullet and build a bigger system. More hospitals. Is that what we need to do with the long-term-care system? Just make it much bigger?

Hirdes: There are competing trends that come into play. The first thing is, people don’t want to end their lives in nursing homes. You don’t need to do a survey. Nobody wants to do that. No one’s ultimate goal in life is to end up in the nursing home. People want to stay in the community as long as possible. We’re always trying to find ways to reduce unnecessary institutionalization rates. We’re getting pretty close to the point that there’s not a lot of unnecessary institutionalization happening, and that’s why that 9 per cent number I mentioned earlier matters. 

Gurney: If 9 per cent of people in LTC could be cared for in the community, flip that around: 91 per cent of people in LTC absolutely need to be there.

Hirdes: Exactly. That’s it. A big problem that we have is that we like the idea of people staying in the community and getting home care, but we radically underfunded home care. Most home-care plans get very little. They get dribs and drabs of PSW support but very little nursing support. There’s not good connectivity between home care and primary care. So that part of the system that could deal with some of the people in the community isn’t adequately resourced at all. And the PSWs in home care make less money than they do in a nursing home. So now nursing homes are cannibalizing home-care PSW resources. And then we have population growth. So even though we want the rate of institutionalization to go down, the sheer size of the population is getting bigger, and the sheer volume of people that are going to be in that situation where they need long-term care will go up.

We have other complications. There are more people that will end their lives living alone without a family to take care of them because they’re childless or because of marital separation or simply because their family is not geographically local. 

Gurney: Home care for the childless bachelor is going to be hard.

Hirdes: Right. Home care won’t work in that context. So, you know, we’re going to have pressures for more beds. All the research during the pandemic has shown we need to get rid of those horrible four-bedroom homes that are ancient, that don’t have adequate ventilation systems — they need to go and need to be replaced. We’ll have to replace beds before we add any. There is a lot of work to be done. And, in fact, if you think about it, from an economic point of view, it’s not a bad investment to sort of think about rebuilding those old crappy homes as an infrastructure investment that actually helps with the health of very vulnerable populations. It’s going to be a hell of a lot of work.

Gurney: John, that’s everything on my list, and more. Before we wrap up, anything you’d like to add?

Hirdes: Sure, just one thing. A contextual thing. I’m part of a 35-country research network that does research in long-term care. There’s no country that’s done it perfectly. But we have some real challenges. There are some things that we’ve done better than other countries and some things that are worse. Nobody’s got a magic solution out there that we can just adopt and fix the system overnight. It’s going to take a lot of effort to fix this. 

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

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