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- 8 July, 2021 The Future of Elder Care in Canada
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July 8, 2021
The Empire Club of Canada Presents
The Future of Elder Care in Canada
Chairman: Kelly Jackson, President, The Empire Club of Canada; Associate Vice-President, Humber College
André Picard , Health Columnist, The Globe and Mail & Author
Linda Knight , CEO, CarePartners
Dr. Samir K. Sinha, Director of Geriatrics, Sinai Health System and University Health Network
Distinguished Guest Speaker
Michael McFaul, Partner, Board Member, & National Life Sciences and Healthcare Leader, Deloitte
It is a great honour for me to be here at the Empire Club of Canada today, which is arguably the most famous and historically relevant speaker’s podium to have ever existed in Canada. It has offered its podium to such international luminaries as Winston Churchill, Ronald Reagan, Audrey Hepburn, the Dalai Lama, Indira Gandhi, and closer to home, from Pierre Trudeau to Justin Trudeau. Literally generations of our great nation's leaders, alongside with those of the world's top international diplomats, heads of state, and business and thought leaders.
It is a real honour and distinct privilege to be invited to speak to the Empire Club of Canada, which has been welcoming international diplomats, leaders in business, and in science, and in politics. When they stand at that podium, they speak not only to the entire country, but they can speak to the entire world.
Welcome Address by Kelly Jackson, President, The Empire Club of Canada
Good afternoon fellow directors, past presidents, members, and guests. Welcome to the 118th season of the Empire Club of Canada. My name is Kelly Jackson. I am the President of the Board of Directors of the Empire Club of Canada, and Associate Vice-President at Humber College. I'm your host for today's virtual event, “The Future of Elder Care in Canada.”
I'd like to begin this afternoon with an acknowledgement that I'm hosting this event within the Traditional and Treaty Lands of the Mississaugas of the Credit, and the homelands of the Anishinaabe, the Haudenosaunee, and the Wyandot Peoples. I also want to recognize the enduring presence of all First Nations, Métis, and Inuit peoples. In acknowledging Traditional Territories, I do so from a place of understanding the privilege my ancestors and I have had in this country, since they first arrived here in the 1830’s. Delivering a land acknowledgement, for me, is always an important opportunity to reflect on our human connection, and our responsibility to care for the land. Today, I'm also reflecting on the stories of the land and the people who live on it, in particular, the experiences of Indigenous children who were forced to attend Residential Schools. And many of those individuals, stories, and experiences, remain untold, buried with them in the land. And many survivors who have tried to tell their stories were not believed. As we work towards reconciliation, how we listen and learn from each other is so important. We encourage everyone tuning in today to learn more about the Traditional Territory on which you work and live.
I now want to take a moment to recognize our sponsors, who generously support the Empire Club, and make these events possible, and complimentary, for our supporters to attend. Thank you to our lead sponsor, Deloitte, who you will be hearing from after today's discussion with some closing remarks from Michael McFaul, and thank you to our season sponsors, Waste Connections of Canada, and the Canadian Bankers Association. Last but not least, I also want to thank our event partners, BDC and LiveMeeting.ca, for webcasting today's events.
I just want to remind everyone participating today, that this is an interactive event. Those attending live are encouraged to engage with our speakers by taking advantage of the question box to the right of your screen. We have a lot of time for Q&A at the end of the discussion. We also invite you to share your thoughts on social media, using the hashtags which will be displayed on the screen throughout the event. And to those watching on demand at a later date, and to those tuning in on the podcast, welcome.
It is now my pleasure to call this virtual meeting to order. We are excited to bring you today's event on a topic that impacts all of us, whether today or in the future. What kind of healthcare and support do our elders need? And what do they want? With the baby boom generation recently beginning to hit retirement age, these are the kinds of questions that governments, healthcare practitioners, families, and businesses are contemplating. Cue the pandemic, and the state of long-term care, and options for eldercare became daily headline news, and a topic of conversation for all. Today, our panel picks up that conversation, by looking at what changes need to be made to our healthcare system, to improve the lives of Canada's elders. I will now do a brief introduction of our panelists before turning it over to them to get us right into it. It's my absolute pleasure to welcome André Picard, Linda Knight and Dr. Samir Sinha to Empire Clubs virtual stage. André Picard is a health columnist for The Globe and Mail, and author of Neglected No More: the Urgent Need to Improve the Lives of Canada's Elders. He will be moderating the discussion today, and he is joined by Linda Knight, CEO of CarePartners. Starting her career as a visiting registered nurse, Linda started a health homecare agency from her kitchen table in 1983. Initially servicing rural Huron County with two nurses, Linda grew CarePartners into an organization of almost 5000 nurses, personal support workers, and therapists, delivering nearly 6 million hours of service throughout Ontario. Joining André and Linda is Dr. Samir Sinha, Director of Geriatrics at Sinai Health System and the University Health Network in Toronto, an Associate Professor of Medicine at the University of Toronto, and the Director of Health Policy Research a Ryerson University's National Institute on ageing. A Rhodes Scholar, Samir is highly regarded as a clinician, and an international expert in the care of older adults. He was recently tapped to lead the development of new national long-term care standards for Canada. If you would like to learn more about any of our panelists today, you can find their full bios by scrolling down the video window on your screen. With that, I'd like to now turn it over to André.
Opening Remarks by André Picard, Health Columnist, The Globe and Mail & Author
Well thank you very much, Kelly, for that kind introduction. Looking forward to the panel, because, among other things, COVID-19 has really focused our attention on the inadequate care of elders in this country. COVID-19 ravaged long-term care homes in particular, we've had roughly 25,000 pandemic deaths in Canada, and about 17,000 of those happened in these congregate settings. So, elders were disproportionately affected to a very large degree. Now, out of this disaster, we've seen increasingly vocal calls for better care homes, but also for alternatives to mass institutionalisation. Homecare, supportive housing, more support for caregivers, and even changing what long-term care homes look like, have all been proposed as solutions; and we're going to talk about some of those today. You know, what is the future of eldercare in Canada? What should it look like, ideally? How can we make life better for people that we respect, our parents and our grandparents? And as you heard, we have two very insightful and experienced care providers here, to help us understand the problems, and mostly to help us understand the solutions. So, I'm going to kick off the discussion with some questions. As you heard, we welcome your questions, I'm going to get them as we go along, or multitask, and I'll try to incorporate your questions into the conversation. So, without further ado, let me turn to our experts. Linda, I thought I would start with you. We heard in your very short bio there that you have a lot of experience. You started out in this field quite a few years ago as a nurse, you worked for the Ministry, you became an entrepreneur. So I thought, with your historical perspective, you could start us off by helping us understand, where did things go so terribly wrong, that we got to this point where thousands of elders died, tens of thousands are on waitlists. Where did things go off the rails?
Linda Knight, CEO, CarePartners
Thanks, André. Well, first of all, you know, I have been in the sector for over 40 years, and it's been, you know, an interesting journey through various governments, and various approaches. And I, you know, we've got probably a bunch of binders on shelves of different groups that have tried to help the system for sure. I would say, you know, things managed fair really well, certainly from my perspective, we were able to get staff, probably PSW’s, we started to have a problem about four years ago that, all of a sudden, there was fewer and fewer PSW’s that are available. A lot of reasons for that. One of them is, you know, we haven't been able to keep up in homecare with some of the wages, so, some of some of the things that have happened to us, if a Costco comes into an area, we're constantly worried. We have PSW’s that, it's a very, it's a tough job; it's, you know, a lot of heavy lifting, it's a lot of, you know, sending odd hours. If I was to kind of list the things that have caused a shortage of PSW is in the sector, I would say it has to do with wages, the schedule, which is difficult, and I just wanted to talk a little bit about that. We've got, we cover both rural and urban, so we go from Thunder Bay to Windsor. And we've got some towns that only have four PSW’s, and so, we might need them in the morning, but then in the evening, again, we need them, but there's a slow part through the day and that's very difficult for them for employment, for consistency. So, turnover has been very, very high in the PSW world. Wages, schedule, what I hear from the PSW’s is, what we’re about is we want time with our patients. And anytime, you know, the system—which includes us—messes with that time, gives us less time with the patient, it makes it that it's not what we're in this industry or not what we're here for. So, that becomes difficult. They truly are the heroes in the home, and I call it a silent army. There's 60,000 people working in homecare right now, very quietly, we have no walls. And so, we just keep trying to deliver care in all sorts of circumstances. Some of the homes are not ideal, sometimes there's pets, sometimes there's, you know, there's a lot of challenges.
So, I would say the PSW shortage hit us about four or five years ago. But what also has come quickly behind that is the nursing shortage in homecare. And same thing, nursing in homecare is very, very challenging. I find nurses tend to really like it, it's a very much a one-to-one type of industry. they're the last generalists. But we'd lost pace with funding, with being able to pay them what they could make in a hospital. So, there's been unintended consequences, you know, just COVID, for example, we cover a rural area where we had 30 nurses, and when COVID hit, seven went to work for public health. And you know, that is a huge hit when you have 30 nurses, and then we're scrambling, so we're, you know, all the companies went to overtime. So, the challenge has just been the shortage that has hit us, and hit us hard. And you know, as I said, I've been in the sector for 40 years, and I've never seen such a shortage. And so, we definitely need to figure a solution, an HR solution.
Yeah, so I'm hearing pretty fundamental structural issues, staffing, funding policy choices, lack of time for people to care. So, there's a lot a lot of meat for us to discuss, to unravel in the next hour, so we'll do that. Samir, I wanted to turn to you, again, starting with a pretty fundamental policy question. You know, we see polls time and time again, saying that elders want to remain in the community, they want their independence, but everything in the system funnels them to these institutions. So, why isn't this a political priority to essentially do what people want to do; what's cheaper, what's better? Where's the disconnect there?
Dr. Samir K. Sinha, Director of Geriatrics, Sinai Health System and University Health Network
Yeah, it's one of these kind of real weird policy conundrums, because when I was tasked with developing Ontario senior strategy back in 2012, you know, I would do this party trick—that I would do in the room today if we were all together in one room—where I'd say, “please raise your hand if you aspire to end up in a long-term care home.” And of course, nobody would raise their hand, or somebody might mistakenly be scratching their head, and then they quickly lower their hand when they realized what the question was. Because, again, it's not disparaging our long-term care homes, and the people who work there, and the people who need to be there. We absolutely need to have a strong long-term care home system for those people who absolutely need that level of care, and they need a good level of care. But fundamentally, you know, if you ask any Ontarian—and especially during this pandemic, with the horrors that actually happened in our care homes—we now have seen shifts where 70% of older people, and 60% of Canadians in general, are now saying, through one of our NIA reports, one of our surveys, that they have now reconsidered whether they'd ever want to age in a long-term care or retirement home. There have been fundamental shifts, and we had another survey we did with the Canadian Medical Association back in February, where basically, 97% of older Canadians are saying that they would do everything humanly possible to remain in their own homes for as long as possible. So, this is not about 51% versus 49%, as you said. Time and time again, this is what people are saying they want, however, this is also what Linda's talking about, in terms of the care that we can provide in people's homes. Again, you don't have infrastructure costs associated with delivering homecare. People have their own homes, they have their own beds, that's where they want to be, and actually, you could be much more efficient in deploying care into people's homes without having to worry about the infrastructure costs, worries about infectious disease and other things.
So, I've always reminded people that when you look at how other countries have structured their publicly funded long-term care systems, for example, there's a much heavier emphasis around providing care for people in their homes for as long as possible, because it's far cheaper to do that, and it's actually the preference of people. So, I always remind people, this is the rare policy opportunity where what people actually want, is what's actually cheaper for taxpayers to deliver; it's a win-win-win. But I do think that there are always forces at play. You know, you always have some organizations, for example, that might have better ear of governments. I think politicians love to do ribbon cuttings, and they love to, you know, open a shiny new home with shiny new beds and say, “this is how we're solving the eldercare crisis; we're building this institution.” And I think, for a lot of people, I think they've just thought, well, that must be the right way. But I think people are realizing it's actually cheaper, and safer, to receive care in your own home, in many cases, and often more preferential for people as well. I think, slowly but surely, people are now coming to understand the opportunities here, and I think it's harder to ignore, especially on a policy lens, where we need to be heading, moving forward.
I want you to flesh out the money question a bit, because I'm sure a lot of audience members are surprised to hear it's cheaper. Because every discussion of homecare seems to begin with, “we'd love to do it, but it's too costly”. So, convince our audience that it actually is cheaper.
Dr. Samir K. Sinha
Yeah, so I wrote a policy paper on this. It’s actually one that I produced for the Premier's office and the Minister of Health and Long-Term Care right before the pandemic. And it was, really it was basically entitled, “Bringing Long-Term Care Home,” and it was really focusing on the Ontario situation, because if we think about it, right now, we currently have about 39,000 Ontarians who are on the long-term care waitlist, for example, so these are people waiting to get into a nursing home. And right now, our current government has come to power basically saying they plan to build 30,000 new beds, but we also have another 30,000, out of the existing 79,000 beds, that are built in 1972 design standards, and need to be rebuilt. And so, just if you do the math alone on what it would cost to rebuild 30,000 beds, and build 30,000 new beds, we're talking about between $12 to $16 billion; that's just to build the infrastructure there, right? So, when we talk about homecare, we don't—again, Linda is not factoring in infrastructure costs, for example, in terms of we need to build, you know, new HVAC systems, and we need to build new buildings. You know, generally people who are receiving homecare are lucky enough to have a home and a bed, and sometimes there might be equipment that needs to be done, but even that equipment can be recycled and reused, you know, in other ways. So, a) when you think about homecare versus long-term care, you think about the infrastructure costs—that's something we don't often talk about—but then we also talk about the cost of just providing care to someone who's in a long-term care home. And when you think about the facility costs that are associated, the construction, you then think about the operation aspects, the housekeeping, all of those other things, plus the care itself, you know, that starts adding up to about $200 a day. And there's a co-payment in Ontario, for example, where people are asked to contribute to their own costs, but we know one in three Ontarians can't even afford the co-payment that the Ministry would expect them to pay. So, often we're subsidising, you know, that industrial complex, if you will.
When you talk about home and community care, the province itself, the Ministry of Health, actually says, to provide a person who is eligible for long-term care homecare in their own homes, it's about $103 a day, about half the cost it costs the Ministry of Health and the Ministry of Long-Term Care to provide care for an Ontarian in a long-term care home. And that's by providing, you know, again, more care on average than the average homecare recipient will require, because some people only need a visit a few times a week, but we're talking about people who might need a few hours of care a day. And the Ministry, our own government, says it's about half the cost of providing care per person in long-term care home. So, the math doesn't lie; it's been there. I've written a wonderful thing where you can see everything all laid out there, so that you can—if number crunchers out there, don't believe me, it's all laid out there—but again, that's your fundamental question. So, if the math doesn't lie, and the people are saying this is clearly what they want, then why aren't we seeing a massive sea change to correct some of these issues that are making it hard for folks, like Linda and her colleagues, to deliver excellent high-quality homecare, which is what Ontarians overwhelmingly want?
Pretty convincing to me, so we'll see how the audience reacts that one in the questions. Now, you know, one of the things I hear a lot from families, one of the most frequent complaints, is they say, “the system is so complicated, it's so hard to just get the things that I want.” Why is it so complicated to provide elders with care? It seems pretty basic to figure out what they need, and to provide it. What's the hiccup there?
Um, well, you know, I think that all of the providers that are out there—and there are many of us that are trying to deliver care—we all have a contract with the community, Home and Community Services, which is the new name, it used to be the LHIN; and I will tell you, they've done an excellent job at trying to think outside the box deliver services in shifts. We're in a system that's just in time, basically, so we have no surge capacity. Like, if we don't send a PSW or a nurse out for a visit, or a therapist, then you know, we're not paid, they're not paid, and so we've got this kind of a model that is has basically absolutely no surge capacity. So, that that's a huge problem. Like, even when COVID first hit, many patients said, “I don't want anybody to come to the house,” and then we also added into that many PSW’s that had childcare issues, and they needed to stay home. So, all of a sudden, we had a huge dip in volume, it's just a difficult thing to manage, in terms of capacity. In terms of—very different in homecare, we don't have full shifts paid. Now, I will say, as I said, that the provincial government, and what used to be the LHIN, and Home and Community Care, are definitely trying to come up with new models to help us with that.
So basically, I'll tell you, in my world what would happen, it's six o'clock in the morning, and we were planning to send PSW’s out to a home, or nurses, and you know, 10 call in sick, say, for—and they're very legitimate, I'm not saying there's any problem—well, we scramble then, to try and find somebody who has some capacity to pick up that patient, so that we can deliver the care. So, it's a it's a challenge when we're delivering service to, you know, 60,000 homes all over the place, and trying to make sure, okay, somebody called in sick here, how are we going to, how are we going to get somebody there? So, and, you know, I will say we have created a bit of a system where we're doing the scheduling, there's an authorization through Home and Community Care. So, it's not a simple system to navigate, I do understand that. However, I do think we could do better with—you know, years ago, they had a program called the Frail Elderly Program, where the patients could be kept on as needed. So, you know, to your point Samir, sometimes the patients are coping very, very well, and they don't need it, but maybe instead of us discharging them from the program, we just hold them if they need, rather than have to go to emerge, rather than have to somehow, you know, access a congregate care setting, maybe they could just directly contact their homecare provider to have someone come out in an emergent, more of an urgent situation. Again, it all goes back to making sure we have enough staff to deliver on that. But you know, I would say I understand what the patients are saying in terms of the various, you know, hoops, I guess, that they have to go through.
And when you use terms like “just in time,” makes it sound very industrial, assembly line-type care, that's another complaint I hear. This is not person-centred, family-centred care; that’s what I'm hearing.
Well, we definitely want it to be. I think our funding model maybe needs to change because, you know, if we hire a PSW, and she doesn't have any work for three days, we're going to lose her very, very quickly; same thing with a nurse. So, you know, I think there's opportunities for us to improve that, that we sort of have guaranteed hours that we can provide service, and we can maybe recruit and retain the staff. So, I do think there's some potential there for that to get better.
QUESTION & ANSWER
And we already have a lot of good questions rolling in. So, I'm going to throw one of them right to you, Samir. It's about caregivers. Someone's noting, you know, we have these two care providers on the panel, we don't have a caregiver, who do the bulk of the work. What can we do to make their lives better, to ensure that they—because people you, know, my experience is most people can deliver this care lovingly and willingly, but they're just overwhelmed. How can how can we help them out?
Dr. Samir K. Sinha
Yeah, like we basically set up a system to fail, this is this is the problem that we're talking about here. A) it's quite mysterious as to kind of what services are out there, and what you can rely on; we don't have a clear social contract in Canada or in Ontario, saying that if you need supports, so you know, if you're a family caregiver wanting to provide support to a loved one at home, or if you're just an older person who might think that I need some support, or help, with everything from snow shovelling, to helping to take a bath, whatever that might be, we don't make it clear for people to be able to go to one point, to understand what is actually available in their area, how to access it. And the challenge is, when you think about seniors in Ontario, or care related to older people, it's divided between the Ministry of Seniors, which is the Ministry of Retirement Homes, and seniors, things to help, you know, keep age-friendly communities and things. You then have the Ministry of Nursing Homes or the Ministry of Long-Term Care, you then have the Ministry of Health, and then there's also the Ministry of Community and Social Services; so you have all of this siloed across different groups. And then you start thinking about, so how does anybody navigate what they want? Because, as Linda was just articulating, when it comes to homecare services, well, homecare will care navigate homecare, whatever is available in your area, but not community support services like day programs, Meals on Wheels, other things. So, all of a sudden, it really leaves older people and their family caregivers are real tough time to scramble.
When you actually look at the care that someone living at home is receiving, often upwards of 70% to 90% of the care that that person is receiving in their own homes, is coming from an unpaid family caregiver. They're often suffering in silence, they’re often, especially if you're caring for someone with dementia, it's not a two-to-three-hour task, it's basically a 24/7 experience, for example. And we do no favours by making sure that those individuals don't get extra hours of support available to them, not just for those tasks like bathing, but for giving them a break, or making sure that they're aware of new financial supports, like the Canada Caregiver Credit that actually exists for unpaid caregivers. We do a lot of disservice for them, and for the older folks.
So, the things that we're trying to do, that I've been emphasising since I wrote my report in 2012—which was the first time we started thinking about caregivers in a meaningful way—is saying, number one is, we need to actually create more community resources and programming to give caregivers a break; things like adult day programs, you know, kind of what we call daycare for an older person, for example, that gives that loved one a break, allows them to go to work, for example. Also, more hours of care that can be provided, so that that caregiver can take a break, or can at least not feel too overwhelmed with the task their loved one needs. And then third is making sure that we provide education and financial supports, because a lot of caregivers often just don't have some basic information that, “how do I manage with the person with dementia? I don't have professional training, but I want to do my best.” And then how do we make sure that, when the average family caregiver is spending about $3,500 of their own money every year to provide unpaid care for a loved one, be at a family member friend, how do we make sure that they have some of those financial supports? We’ve made progress, but most people don't even know about the Canada Caregiver Credit that we pushed through in 2017. And so, these are some of the challenges that make it even more complicated, when we're not even supporting the family caregivers beyond the 60,000 people working in our homecare sector today.
And just to give the audience some context , there’s about 7.8 million Canadians who provide care to a loved one; 780,000 of them provide more than 50 hours of care weekly—it's essentially a full-time, unpaid job. And, you know—we have to say out loud—predominantly women caring for older loved ones, and often they have children as well. So, that sandwich generation is really, really impacted by these lacks in our eldercare system.
Dr. Samir K. Sinha
And if I can just interrupt, the one extra fun fact here, André, that if anybody thinks that, “okay, fine, let's not rebuild our homecare system, but let's just rely on those family caregivers and that goodwill,” here's a fun fact: over the next 30 years, we're gonna have one third fewer available family caregivers to meet the needs of our ageing populations. So, that is not a clear source of care. We have to think about how we're going to manage that gap, with declining fertility rates, and other challenges as well.
Yeah, that is an interesting fact—I'm not sure I'd put it in the “fun” category, but we'll put it in the fact category. Now, Linda, a follow up question to the one, there's a lot of questions coming in about caregivers, and maybe you could help us out. A lot of people are interested in just the practical; what is available, where do you go to help get help? How do you navigate this system? Can you give people some tips, so where to where to go?
Well, you know, in Ontario, we have two systems. We have the family-funded system, and there are multiple providers of that service. We have tended to be public service contracts through the Home and Community Care Services Group. And so, calling them, what used to be the local LHIN, would be your a good start if you feel that you could use some additional services. I wanted to piggyback a little bit on to your comment around what the patients need, and I would be remiss to not commenting on palliative care. So, if you were to ask most people in Ontario, or in Canada, “who wants to die at home?” A very, very percentage of them would say that they would. The problem is—and my mom died at 56, so I was part of that, as my family—it's very, very hard. At the very end, you're awake all night, it's a tough go. And so, some of the programs that have been brought forward, and the Ministry has approved, it's been they've been very, very good is e-homecare, where we have specially trained E-PSW’s, that are paid a full shift, so the family can sleep. And so, it's been a huge success, the families say, “I feel like I have wings, because I got some sleep last night,” and then through the day visiting nurses come and go. So, there are innovative programs that are coming about. Now, one of the key factors that we found most successful is, we're paying that PSW whether the shift is needed or not; and all of a sudden, we can get them, we can keep them, we can hold them, they're highly skilled, you know, they can count on that income. So, there are some things that we are doing, and that would all be available, you know, depending on the region, through the community homecare services.
And as you speak of the PSW’s, I'm reminded of—there's a saying in the sector that, you know, the quality of care, the quality of the work environment reflects the quality of care. So, we have to treat the workers well, paying them for their shifts properly, etc. That's the only way we're gonna get decent care.
Yes, for sure. They are the true heroes, and I know many places have a Heroes in the Home Program, and it's been a one—it just felt really good, warms your heart to understand what they're doing every day. And I will say that we cannot underestimate the relationship between the PSW and the family, or the nurse and the therapist, and the family. Many of them are very close; they're allowed into their home as a guest, it's very intimate relationship. And so, that's a huge part of homecare for sure.
And Samir, another question is coming back, you noted in passing, you know, you're not too bad-mouthing long-term care homes, and someone is saying, well, how do you balance that if you have a loved one? How do you balance the desire to stay at home, but the dangers of isolation and loneliness? A lot of people do like the long-term care setting, because they do have people around them, they have activities, etc. How do you find that balance? And we saw again, we saw the impact of isolation during COVID, of course, as well. So, how do we find that balance?
Dr. Samir K. Sinha
Yeah, I think it's, again, I think we have to think about this as a continuum of care, right? So, we have to think about people who want to, you know, age well, and independent for as long as possible. So, there are many things that we can do, to help people stay healthy and independent in their communities. And this is even an aspect that we call preventative homecare, you know, things that we can do to support people so that they don't actually face frailty earlier on, and then become more isolated in their communities. And then you think about the things that we can do to support people in their own homes, and their communities, to stay connected. But there certainly are multiple times, when I'm working with a family, and I say, “this is now when we need to look at a long-term care home,” and it could be due to severe isolation or loneliness, it could be just due to the care needs are just overwhelming, too overwhelming for the family, and for what, you know, government supports can provide. So, I think that, you know, the danger that we have, or that we've developed in places like Ontario in particular, and around the country, too, is we have systems that are not thought of as a continuum, but rather piecemeal. And so, you know, to Linda's point, is that, why, you know, why do we not have the staffing, acute staffing issues: why aren't we hearing about this in hospitals, you know, versus why are we hearing a crisis is happening and in homecare, for example? Part of is because we're not thinking this of a continuum, and thinking about a nurse, is a nurse, is a nurse, a PSW is a PSW.
I have this line that basically is, the further you walk away from any hospital in Ontario, you know, the further you walk into the community, into a person's home, the lower your pay actually gets. So, there's a ladder. If you get an entry level job as a PSW, only like five or six years ago, it was $12 an hour. And this is often caring for people who are living with dementia, have significant physical limitations, and other supports. This is expert skilled work. This is work that I really deeply respect, because this is not easy work to be done. Yet, you know, now we have this kind of minimum wage, you know, set at $16 an hour—just so people understand these numbers, for folks—and this PSW wage increase right now, which the government in Ontario said, you know, “I love PSW’s, and I'm for it, and I'm going to make sure this happens.” And then the premier’s office walked back and said, you know, “our premier is committed to this idea, but not necessarily committed to making it happen just yet; but stay tuned.” You know, the challenge with this is that we're talking about paying people significantly less than they would make in a long-term care home, or even better in a hospital.
And just to give people an example of this, I have this incredible caregiver who has been working full-time, 24/7, with a couple that I've been caring for for years, with dementia. And I remember, it broke my heart a year ago when, after one of the couple had died, and he, you know, he's committed to staying and caring for the other one until she passes on, but he said, you know, Dr. Sinha—he waited till she left, you know, the daughter, and the patient had left the room—and then he held back and he said, “Dr. Sinha, I know that she's not going to live forever, but I'm hoping that, after she passes, you would help put a recommendation for me to get a job at your hospital as a cleaner.” Do you know how that breaks my heart, that this person’s aspiring—as an incredible personal support worker—to work as a cleaner. It just really gives you a sense about how we don't think of this as a continuum, and how we really need to think about, if we have things like wage parity, which has been done in other provinces, you don't have this thing where people are looking for different things. And then number two, you give stability of employment, you know, that dignity of respect and work for these jobs, and that would go a long way to stabilizing our homecare system. And then, allowing people to understand that we're making decisions, not based on a shortage of care that forces people to go into a long-term care home. Because right now we have over 50,000 Canadians on waitlist for long-term care homes, we have another 430,000 who reported having unmet homecare needs. You don't have to be a rocket science to say if we can't meet your needs in the home, you're going to force a disproportion of people to go prematurely into long-term care. So, that's where I always think of it as a continuum. And knowing that there are times when it's much more appropriate to have someone in a home, versus in their own home. But again, we're not really giving people and care providers and families the opportunities to really kind of manage things in the best way possible.
Yeah, and I like that you pointed out this is low paid work, it's not low skilled work. I think anyone who has ever tried to bathe a loved one with dementia, suddenly really appreciates PSW’s, just how difficult that work is. Now, Linda, I think we have a lot of people have recognized you have a lot of insight or knowledge, so they're asking some fairly technical questions, so I’ll throw them your way. Who exactly decides how much homecare you get, what's appropriate, the caps, how much respite care? Who makes all these really life-changing decisions, invisibly?
Well, the Home and Community Care Program, which is government-funded, they have a care co-ordinator that usually does the assessment and comes up with the plan. I will say, you know, it's a conversation. Sometimes, and I know that there's a movement afoot to kind of eliminate all these caps and that kind of thing, but it is something where, if we needed extra visits, we would talk to the care co-ordinator, and we'd ask if we could have more visits as needed. I will say, to pick up on your point, Samir, the last comment, we just recently hired somebody that came from the UK, and they were saying, you know, he was saying to me that we’re puzzled by this, because in the UK, a nurse that works in the community is more valued, because they have no one down the hall to ask, they're working independently, you know, they're having to make decisions without supervision, you know, and so there was a surprise that there's a difference here in Canada. And I would agree with you that these are highly, highly skilled, like we're talking nurses and therapists and at the top of their game, nurses that are running pain pumps, central lines, all of that. So, it is unfortunate, and I, you know, would hope that they would make a decision based on where they want to work, not what they're paid, right? And so, that’s what we have to fix, I think for sure.
And I'll throw another one your way, while I have you, Linda. Someone's asking, how did homecare cope with COVID-19? How did you do it safely; did you stop? What happened during COVID? We heard a lot about the long-term care homes, but nothing about homecare.
Well, I will say, to the credit of everyone that's delivering homecare, we survived, you know, the very best we could. We had a dip in our volume, which caused us a bit of a challenge. I remember someone from one of the hospitals saying it's 100 times safer to be at home, than it was in any other congregate setting; and I think the statistics bear that out, that people survived through COVID at home, Samir, with homecare, much safer than they were in a facility. So, staff have slowly been coming back, it's been a slow grind. We've have a very high vaccination rate, I think ours, the last one was at 80%, that was our target; we were getting, we’re almost there, or we're there. So, and the patients are very happily opening up, to, you know, now let's get back to some sort of normal. We did have a challenge, I will say, with there was a regulation that came in that you couldn't work in more than one facility, and we have some PSW’s that work for us, they also work for a long-term care facility, they had to choose. So, then, you know, if they went to the long-term care facility, we were short staffed, and so, we're still recovering from that, to try to get this to get stuff back. So, I will say, in general—and Samir, maybe you could comment on what you've found with your patients—but anyone that was receiving homecare, I think, has slowly been getting back to normal with in a very safe way.
Dr. Samir K. Sinha
Yeah, and just a few quick observations, I think it was quite fascinating to see that I think people were just utterly terrified at the beginning of this. So, what we really saw was, I had a number of patients who basically just cancelled their homecare services, they said, “I'm hunkering down, we're going to try and figure this out,” and of course, that created additional burden for family members. And some family members said, we’re okay with this, because I actually just lost my job, or I'm now working from home. So, it was a huge shift for this, and then it's just as Linda was saying, you then also had all these new positions in public health, in hospitals, vaccine clinics, so all of a sudden, people said, “wait a minute, hospitals are desperate to hire people and pay premium rates to work in the ICU; I'm just going to leave my role in homecare, and go and do that.” So, a huge amount of changes, but what we also saw, was a huge number of people—one of the things that I worked with the Ministry of Long-Term Care on was a regulation, back on March 24th of last year, that allowed people, families, to say, “if an offer of a bed comes up in a long-term care home, do I have to take it?” The system used to say that if your number came up, and you said no, you were struck off the list, and you'd start again. Now, people were given the opportunity to say, “I can hold off a little bit longer, and I want to stay at home.” And what I saw, is a huge number of patients of mine, and folks in our home-based primary care program, who were actually electing to stay out of their long-term care home opportunities for a lot longer, or even cancelled their applications And that actually made the complexity that was being seen in the home even greater for providers and families to be able to meet, but it was because they were doing it because they want to stay safer in their own homes, just given what we were seeing in long-term care. So, it's challenging.
And just to answer the other question there. How does how does homecare funding, you know, get allocated? Well, there is a standard assessment that anybody getting homecare or long-term care is actually done, these are what care co-ordinators will do. But then you have a funding postcode lottery, because in our 14 Old LHIN regions, for example, you had differential homecare budgets; it's not the same budget allocated per person in Ontario. So, you have some regions in Ontario that are funded 27% below the average, you have other regions that are funded 27% above the average. And then basically, you allocate that budget, you ration it based on what's available. So, I have, you know, you know, if you look in Toronto, in the in the neighbourhood of Etobicoke, for example, there is this intersection where there are four different regions that come and meet at that intersection, and the same client will get four different levels of service, based on what that regional budget actually looks like. So, there is not a standardized way across Ontario. There's a standard way of assessing, but that doesn't mean that there's a standard way of giving people the same amount of care, depending on where they live, and as Linda will say, it also depends on whether we even have the workers in the first place who can even fulfil those needs. So, there's a lot of fundamental system issues that need to be corrected, if we're actually going to have a real functioning and forward-looking homecare system in Ontario. And frankly, these are similar issues across the country as well.
And we have a big audience, and they seem to have a lot of questions, really practical questions. So, I want to throw this one to you, Samir, if I could. Someone's noting that, you know, these decisions that have to be made often happen in a time of crisis—you know, somebody has a fall, or a heart attack or whatever—-someone's asking, can you give some practical advice on how can a family be prepared for the crisis, which will almost invariably come, as someone gets older; how can you be prepared?
Dr. Samir K. Sinha
That's a great question, right? Because I think none of us really like to think about getting older, or those less glamorous things like the possibility of having a fall, or the or the possibility of actually needing care. And the good news is, most of us are going to live, you know, long periods of our older age, you know, kind of in relatively good health and independently. But we all have to think about, well, what happens if I get dementia, for example, what happens if I start having, you know, physical limitations that mean I need to be dependent on others, and most families just don't want to have that conversation. So, what I usually do is, when I have a new patient in my in my geriatrics practice, you know, I have these conversations; like, what do you want the future to look like? What's the game plan? What are we thinking about? Most of the time, family members will say, “well, I have a plot at the Mount Pleasant Cemetery,” and I’m like, I don't care about who gets what after you die, or what happens after you cross the finish line, or where you're gonna be buried or cremated, I want to know what the last 100 yards could look like. What would you want? Where would you want to receive that care? Do you have family members or friends who would step up and willing to provide?
And I always say—I think you wrote about this in your book—my magic formula when I diagnose a family with dementia, is I run this formula in my head basically saying, how much money do you personally have, and do you have a family? Because frankly, if you don't have money, and you don't have a family, and you're just relying on what government supports are, you're kind of living at that at the mercy of what the system can do. So, by actually thinking about things in the future, what do you want your care to look like, what is actually practical, what is reasonable? I think that's when people start having those important conversations that can allow them to say, “okay, this is what mom would want; this is what we're going to do with the resources.” And also, it's that opportunity to start looking around one's neighbourhood and saying, what does the homecare service provide; what does that look like? What are the local community agencies providing; what could that look like; how can I support that out? But I find most people don't actually think about the future—they don't want to, it's not a pleasant thing to think about—but I find I always say to my patients, you know, a great defence is a good offence. When we actually think this through, when we think about what the future could look like, it makes it much easier for me as the care provider, and the family, and frankly, my patients, to actually say, “right, we talked about this, this is where we enact stage two of this plan, and this is how we actually do that.” So, I think it really starts by having that conversation, getting to understand the resources that are might be available, what are the qualifying criteria, what that looks like. Because I think just having that understanding, or that reasoning in those conversations, allows people to not be acting purely in crisis mode, because when things go bad, they go bad really quickly. And frankly, it's just it's, you know, it's not a pleasant situation to be in, where people are then making decisions, as you said, in the state of crisis, as opposed to thinking proactively, and feeling much more certain about, we thought about this, okay, and this is what we're going to do now.
And in my book, I quote someone as saying, “the most important conversations we can have about ageing take place around the kitchen table,” just getting a sense of what you really want, and it's—I know, as a former family member, it's a tremendous burden to try and guess what your parents wanted; it's so much easier to just have them tell you. So, those are really important conversations. Linda, another tough practical question from our audience. They’re asking, at what point do you say, or do you know that people, homecare can't do it for you anymore, you have to go to a home? How do you know; and how do you have that tough conversation with a family who doesn't necessarily want to hear that?
Well, that's something that we really try to not have. Usually they end up going into probably into hospital, I would say, Samir, and then from there, they get placed. But I will say, you know, one corollary positive of COVID—I have a son that happens to be in real estate, and he said they've never had so many requests for a nanny suite. So, you know, homecare, if someone needs 24/7, homecare isn't going to be able to provide that. we just can't, you know, we don't have the staff. and then the costs become prohibitive. But if you've got a family that's willing to support, or have, you know, have mom or dad live with them, at night there's somebody there. And I think that's coming around, like I think Canada hasn't really been there, but other countries are. And I think that might be what we need to start looking at is how can we support, you know. Certainly, the area that I service, we have lots of Mennonite, or Amish, and it's very common in their culture, that that's what they do. And I think that's what we're going to have to start looking at as a society. How are we going to support the elderly at home with us? Because it's not been something we've been doing.
Yeah, I think it's a good reminder, what you're saying, that ageing in place, we talk about that. But it means a lot of things; it means changing, building rules, it means changing how we build cities, sidewalks being cleared—there's a lot of banal little things that decide people going into care homes that could be dealt with otherwise. And Samir, a similar question along those lines, you know, people are wondering, you feel terrible guilt when your loved one goes into a long-term care home, but sometimes it's necessary. So, how can you, how can a family decide, I have to do this now, even though I'm gonna have this crushing guilt?
Dr. Samir K. Sinha
Yeah, often I have these really difficult conversations with families, you know, and preferably, I would say, “I want to have this conversation with you in your own home, or in my office, and not in the emergency department, and not on an inpatient ward, when everything is really kind of falling apart.” And often, you know, again, that's that the idea of a good offence is a great defence. It's the idea that we started that narrative early on, what do you want care to look like? What would make sense? Because, you know, often—it was interesting, when we did a survey, you know, back in 2012, for the Ontario strategy, we actually surveyed thousands of caregivers and thousands of older adults, and it was fascinating to see a disconnect; a lot of older people who are frail were like, “yeah, things aren't going well, but you know, my partner is going to look after me, and my daughter is going to do this, and they're going to be able to do that.” And when you actually ask the caregiver, you know, what do they think, they're like, “yeah, what they think I can do is not what's humanly possible.” So, sometimes there's actually that disconnect. And so often, what I try and kind of—and I have these conversations all the time, where I have someone who says, “I want to stay at home, I want to die at home.” And I said, “well, let's look at the reality of this right now; you don't actually have any family members, you have a friend who lives in the apartment two doors down who's happy to check on you once a day, and government-funded homecare is going to give you a maximum of three hours a day—I might get four for you, but what do we do for the other 20 hours?” And this is where I'm that arbiter, where I say, “you know what, I know, this is what you want, I know this is what you value, and what we would all want, but the system isn't designed to do that; and unless you can find me a million dollars to actually fund what you want here privately, or the system is going to rapidly change overnight, it’s just unfortunately, not what we can do.”
And sometimes I have a different conversation, where I have family members who literally are killing themselves providing that 24/7 care, to the point where they're losing jobs because they can't concentrate at work anymore, they have to balance one or the other, or literally, they're getting sick and ill. And I'm actually worried more about the caregiver than I am the patient, because I feel, you know, the caregiver is going to be the patient, and then what's going to happen to their loved one? And so, often I will have these difficult conversations where I remind people that, “you know what, you can no longer be the daughter or son to your loved one, you're now basically a full time care aide on top of what homecare can provide; and it's going to kill you; and it's actually going to worsen the outcomes of your loved one as well.” And so, in some of these situations where we've really had frank, helpful conversations to say, what can we do and what makes sense, it's been amazing, where months after we transition their loved one to a long-term care home—I remember I had this one lovely woman who came and saw me and said, “you know what, we took your advice, we got mom into the home, which is just in the neighbourhood; I now can go to work every day, I know that she's receiving great care, and you know what? Every evening I go by, and I comb her hair, and we just have time, and I can now be her daughter once again—and I’m no longer stressed at the level I was, and my health is improving as well.” So, it's really about trying to understand the entire—like, I don't just have a patient, I have a family in a situation, and how do we manage it to think about the well-being of everybody involved? But these are really difficult and nuanced situations. I always say, if you have one older patient, you have one older patient, no family is exactly the same. Some of the themes are similar, but every situation is unique. And that's why that planning in advance. And having those conversations allows everybody to be in a more realistic note; to figure out what works well and what you can do, and what you can't do. And when you have to kind of make those decisions that, sometimes they're not necessary what you want, but it's the most practical way to move forward.
And I noticed, you know, you said you asked the question, “do you have a million dollars?” I just note, you're not exaggerating. I have a story in the book of someone who did spend more than a million dollars caring for a loved one with homecare. It adds up really quickly, long-term care can be anywhere $3000 to $15,000 a month. People don't think the financial cost of this and it's quite tremendous. So, Linda, another question for you. Someone's asking, you know, you talked about the importance of people in homecare, and that's essential. But what about technology? Are we making adequate use of technology, to make it easier for the workers, and for caregivers to care, and to keep people at home?
I would say another side benefit of COVID, if there's anything, is we are using more virtual visits, more teaching virtually, more training virtually. Our all our staff have all been provided with, you know, handhelds all across the sector, everyone has this kind of thing. So, I will say there has been some improvements for sure, both in terms of training, recruitment. It's a shift for all of us, because we're used to home visits, and we're not used to—well, we're not, even in this format here—you know, we're not used to a virtual visit, but we have been having some real success, especially around therapy, working with a virtual model. So, I think that definitely has opened the door in the future for—and, you know, particularly an area that we service, which is rural Ontario, you know, sometimes we're driving for two hours just to get to the home. And if we could do something virtually, I think it makes a huge difference in terms of capacity, and how many patients we can see for sure.
And can you give us some examples of technology? I've seen some fascinating things, like you can turn off your loved one’s stove remotely, if you're worried about them with dementia, you can monitor you can know if they are falling, etc. Are there other examples you can give us a practical technologies?
Sure, there’s medication management that you can make sure they're taking their pills on time, you can make sure they're doing their exercises properly, your training, just even checking in, like a lot of chronic disease management, you know, how are things going, keeping track of diabetes, and their blood sugars, that kind of thing. So, I do think there's a lot of positives that have come up come out of being forced to more virtual world for sure, for sure.
I see Kelly's coming on to give us the hook, but I want to ask you each one quick last question. Samir UMB, you used the expression how do you want to live your last 100 yards? So, I want to finish on a personal note. I want to ask each of you, experts in this field, how do you want to live out your last 100 yards? At home? In a long-term care home? Does it depend? Linda? What's your 100-yard dash at the end look like?
Well of course, I love homecare; to have someone as a come into your home is very, very special, and allows you to stay where you are. So, that's definitely where I would be, like the bulk of Canadians. But in order to do that as a sector, we need stability, and we need to do better, in terms of making sure that the rest of the system can trust that homecare is there for them, and the patients. So, we have a long way to go to try to get that confidence back, and I hope we can get there.
And Samir, hopefully it's many years away, but what's your last 100 yards gonna look like?
Dr. Samir K. Sinha
Yes, well, three years into being a geriatrician, a friend of mine, Lyndsay Green wrote this book, called The Perfect Home for a Long Life, and so I edited it, and as I edited it, I made a housing decision. I moved from a two-storey apartment to a one-storey apartment. It's got two bedrooms, one for my future personal support worker, and one for me, basically. It's above a lovely restaurant, which I hope to get my Meals on Wheels from, and I'm just trying to save up enough money, because I'm worried that, you know, 20 years, or 30 years, or 40 years from now, if I need homecare and the government's not there for me, then I'm going to fund my own care. And so, this is kind of how, like, honestly, like, I am thinking about my future, because I want to stay in my own home, I want to stay in my community, I love my neighbourhood. I want to be in charge of what I eat, and what I do. But I also appreciate, realistically, that sometimes that plan won't work out, but that's the plan I'm trying to strive for right now. And the funny last little thing was, I had to do a little renovation and the contractor was saying, “well, you want a door with, Dr. Sinha, that's 24 inches, that's the standard; why do you want 36 inches?” And I said, “look, when I'm 96 years old, and I want to go write an angry letter in response to André Picard’s latest article, I want my wheelchair or walker,”—which the international width, by the way, everyone, is 32 inches— “to fit through that doorway, so I can go sit at my computer and type away what I want.” So, it's again, thinking about what that future will look like, and how you can enable it.
Great. Well, I look forward to those angry letters in 20 or 30 years, hopefully I'll still be working, too. I thought this was a great way to end. Autonomy, respect, dignity, that's what everybody wants as they age, and that's what our system should be aiming for. So, thank you, Linda Knight and Dr. Samir Sinha. And I'll turn it back over to you, Kelly. Thanks.
Thank you so much, André. And thank you, also, Linda and Dr. Sinha. What a great conversation, so informative and revealing in lots of ways. And I do appreciate, André, as well, your ability to get so many of the questions coming from the audience. And it's, you know, I'm sure there are many more that were received, and we appreciate everybody's engagement. I would like to now introduce Michael McFaul. Michael is a Partner, Board Member, and National Life Sciences and Healthcare Leader at Deloitte. Deloitte is our lead event sponsor today, and he is going to deliver some closing remarks. Michael?
Note of Appreciation by Michael McFaul, Partner, Board Member, & National Life Sciences and Healthcare Leader at Deloitte
Thank you very much, Kelly. What a fascinating discussion. And in concluding the session, on behalf of Deloitte as the lead sponsor for today's event, I'd really like to say a big thank you to the Empire Club for hosting it to our two speakers, Linda and Dr. Samir, and also to André, as a facilitator and moderator for the event. Your insights were fantastic. I think the practical examples were excellent, and I take a lot away from today's discussion. The two things that I reflect on, I'm a designated caregiver for my 93-year-old mother, who's in long-term care, and my mother-in-law is in long-term care with pretty severe dementia. And the thing that stands out for me from this discussion, is just how important this pandemic has been, to underscore some of the challenges that we face in long-term care, and for seniors overall. And from a personal perspective, reflecting on where I'm at, we're selling our house, and building a bungalow, exactly, as Samir, you said, thinking about living on one floor. The doors that will be 34 to 36 inches wide, etc, etc, all for the same reasons. I'm still trying to figure out how to get a restaurant in my basement, but we'll sort that out at some point. Just before we go, and one last note. The Empire Club has kindly agreed to provide all registrants with a link to Deloitte’s latest paper, which is, “Making Canada the Best Place in the World to Age by 2030: A Senior Centric Strategy.” So, we look forward to sharing that with you, an email will come out, and it will have my contact information if you have any additional questions. So, again, many thank you, to everyone for taking part in today's event, and enjoy the rest of your day. Kelly, back to you.
Concluding Remarks by Kelly Jackson
Thank you so much, Michael, and thank you again to Deloitte for sponsoring the event today. Thanks again, once more, to Linda, André, and Dr. Sinha. Coming up next at the Empire Club of Canada, will be a panel discussion on “The Role of The Aviation Sector in Toronto's Economic Recovery.” That's happening next week, July 15th, at noon, Eastern Time. Registration is complimentary, and available empireclubofcanada.com. We hope you can join us for that discussion. Thank you again, and this meeting is now adjourned.