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The Challenges Of Moving Into Long-Term Care With Dr. Tamara Sussman
Original Article from: McMaster Institute of Health Equity
Cynthia, what are we talking about?
Following on our conversation from the last episode regarding older adults and homelessness, readers, if you haven’t read it, go back and read it. It’s awesome but you don’t need to read it before reading this episode. We’re going to be talking again about aging and homelessness, but also another hot topic these days, long-term care.
That brings us to our guest Tamara Sussman. She is an Associate Professor in the School of Social Work at McGill University. It’s the Montreal site lead for the Aging In the Right Place research project, which Sarah Canham is leading. Her research focuses on how health services and systems impact older adults and their family members.
Tamara Sussman, welcome to the program.
Thanks for having me.
Tamara, we’re going to talk a little bit about relocation and older adults. Can you tell us first what does that means and move a little bit into what factors make relocation work well for older adults?
The area of relocation that I’ve been specifically focused on in my research has been relocating within the public system to long-term care or what many people still know as nursing homes. Relocation refers to moving from one place of residence and/or one arm of the healthcare system into long-term care. That’s relocation from my standpoint or the relocation scope that I’m talking about. There have been quite a few studies done internationally on the factors that support a good move or a good relocation into long-term care or even a supported care environment that offers a little bit more health supports.
Those things tend to be that there has been involvement in the decision-making process by the older person and their families. If they have families or families of choice that a proactive decision has been made and that there has been some time for the move to happen. We are looking at the space you’re moving into and figuring out the things you’d like to move into that space. On the day of moving, a designated person welcomes you into a facility and becomes your contact person. Through the adjustment process, there’s some flexibility around maybe if you still can afford to hang on to a place that you’re coming from, going back and forth to move in slowly. Being able to bring your things because some places are very regulatory about what you’re allowed to bring in because of health and safety regulations and giving people time to personalize a space. It’s choice, involvement, control and personalization that are key to good relocations and foster better adjustment.
That’s the ideal. How does it work in practice when somebody needs to move into long-term care? How does that vary for different groups of people?
For those who are moving through the public system and more and more these days, because that system is so rigid, that is people who don’t have the financial means to go out and find a place that is ideal for themselves and pay for whatever they need in terms of services. What typically happens is whether you’re in the community or in a hospital, which about 40% to 50% of our relocations to long-term care happen from hospitals. You are given a list of potential choices and strongly encouraged and/or in some cases, forced, particularly from the hospital, to at least choose one place that has a reasonable waiting time so that you don’t block a bed in a hospital, for example. It’s usually done in a crisis, so that proactive thinking and time to process and look around hasn’t happened.
Even from the community, most relocations are crisis-oriented. The move itself ends up being, you get a call when a place is available. You’re given 24 hours to decide whether you’re actually going to take that place or not and another 48 to 72 hours to move into. If you refuse to take place, you are taken off the list for about six months before you can get back on that list. It’s a very punitive approach and it confounds. There is a difference between I’m deciding to apply to move and I’m deciding to move. Most people you start out, you decide to apply to move, but when you get that phone call, you’re being asked to decide to move and to move into the place that there’s a spot for you. It’s a very loaded experience with very little time.
Can I ask for a quick follow-up on that? When you said it’s something that tends to be happening in crisis when someone’s in the hospital, I can only imagine. I don’t know if you’ve done any work on this, what the experience like for the family or the chosen family of someone who’s in this position who is trying to spend time with their loved one, who’s recovering in hospital and then getting a call? “Will you take this place? Will you take this bed in this long-term care facility and having to jump into action?” I imagined feeling very torn between spending time with your loved one who’s recovering and traipsing around what could be a pretty big geographic area looking at different qualities of long-term care phases.
Let me just backtrack. I realized I was talking about two things. The crisis relocation happens both at home and from long-term care. Even at home these days, most decisions are made in a crisis and the relocations happen very quickly. In a hospital, often it’s not the families who get the call. The people at the hospital would get a call and say, “There’s a bed. Tell your patient there’s a bed.” You go and tell the family, “There’s a spot. You’re moving tomorrow.” It’s usually not even presented as a choice because it’s not really. What a lot of hospitals do is they say, “If you don’t take it, then we’re going to have to either start charging you long-term care rates to be here. We can’t keep you anymore,” and all sorts of forced pressures, but you are right.
Families are running around looking at these places that they have to look at immediately just to feel like they have some sense of control as to where their relative might be going. It’s disheartening. I have one paper and the title I used for it came from a quote from a participant relocating from a hospital called I Didn’t Even Make My Bed. They were describing how they had a crisis at home. They didn’t make their bed because they were rushed to hospital and never went home again. That is a common experience of relocation.
When you describe being bumped off the waiting list for six months, is that specific to one province or is that across provinces?
Timeframes might vary, but it tends to be that all provinces have adopted two bad ideas. One of them is punishing people for not choosing the place that they’re offered first. The second is some form of a policy of the first available bed offer when you’re in a hospital, you have to take or you’re expected to take the first available bed that’s offered to you. It’s usually called the first available “appropriate bed” which should mean that it’s a space that a person could imagine themselves living. That it’s within a neighborhood that feels somewhat related to a neighborhood they want to live in or it’s culturally fitting to a person’s needs, but the appropriate gets lost and it becomes a first available bed.
What does a more appropriate response look like? You’ve got, from the hospital’s perspective, a problem of people in a bed that don’t need that level of care right now. Those are highly needed beds to provide acute care. What would an alternate solution look like that would allow people to make those choices without clogging the hospital system?
If we had a lot more available housing options for people with health needs, whether that comes from a more amplified home care service or more moderate levels of housing that can manage someone who’s semi-independent but not completely independent, there wouldn’t be so much pressure to move people into the nursing home system. There would be a basket of other options, but unfortunately, and this is particularly true for Ontario, some province has had a few more options. If you’re someone who would have trouble preparing meals, would need little reminders to take your medications, have limited family support and have no means or limited means to pay for services, which are rather expensive. You could end up relocating to long-term care with far fewer needs than you should have to be there. Part of the problem is the lack of alternatives.
Can you expand on what you mean by amplified home care?
As it stands and as you know, health is provincial. We have a basket of services in different provinces and to boot, our healthcare act doesn’t cover nursing home or home care. Everybody can do what they want to do. For the most part, most provinces have created increasingly stringent caps on available services for home care. The most heavy individual, unless their final stages end of life, which might kick in a bit more enhanced care, would get no more than two hours a day of service, seven days a week. At whatever time a homemaker is available to come in, not necessarily the time that a person might need it to happen.
That means that if you’re having trouble getting up and out of bed and getting going for the day, getting dressed or it’s quite difficult for you to get to the bathroom without a little bit of help or your space isn’t conducive, you have to walk a lot, or you have to do stairs to get to the bathroom. You’re going to have a lot of trouble managing at home unless your family is running around doing much of the invisible things that allow you to stay at home. That is one problem.
The other problem is, let’s say if you took away needing to get meals, needing to clean your house and manage your property. You could manage living in a congregate situation where you could even from your room, get down to a dining hall and have meals with people. Maybe there’s a driver available to take you to medical appointments and it is structurally set up that you can manage with a walker. That’s not that much care. That kind of play is in some provinces only exists if you have money to pay for it. A retirement home is what we call it in Ontario, which means that somebody may have that limited level of needs, who is not living in a house that is set up for aging could end up in long-term care, well before a counterpart who actually has the means to pay for the care that they need.
I want to pick up on this idea of people without the means to pay for private services because you do have a relatively recent paper on homelessness and relocation for long-term care. I know homelessness isn’t necessarily your area of expertise, but you have looked at people without the means to pay for private services or private retirement residences. Can you talk a little bit more about how our long-term care home is meeting or not meeting the needs of individuals coming from experiences of poverty or homelessness?
The added card of homelessness, which is what I focused on that paper you referred to, is that people don’t even have space from which to receive home care. A lot of the shelter system isn’t even set up for the very minimal things that somebody might need to function in there. Those individuals have the added complexity of poverty and a lack of space to get a little bit of care, they end up in long-term care. Even people who are living in poverty might at least at first have a space that a homemaker can come into and provide a little bit of care. For the most part, when you think about how much this stuff costs, you’re talking about $25, $30 an hour for some agency-approved, trained individual to come into your home. It doesn’t take very much for people to begin to have difficulty with affordability for that kind of service.
You talked a little bit about what wasn’t working across all provinces, but you mentioned what wasn’t working specifically in Ontario. I’d be curious to hear how that is working either on the home care front or on the alternate possibilities front in some other provinces. Where are pieces of this going? Maybe not right, but better, shall we say.
I don’t know every single province’s resource, but I can speak to both British Columbia and Quebec, who have been tagged into their relocation system a more intermediate level of care. In BC, this is called assisted living and in Quebec, it’s an intermediate resource. When a care home manager has a discussion with an individual about relocation and the potential for moving somewhere with a bit more support, there are places at a lower level in other provinces that are also publicly regulated in terms of cost in terms of service provision that a person can select from. That means that they’re going to a place that is a little bit more appropriate for their needs, but choice and time for moving are still problems in those systems.
There’s one element that you’ve been saying over and over again and I think is the takeaway to summarize here is that where people end up in long-term care homes sooner than they need to be. Homeless people end up in long-term care homes sooner than poor people. Did I get that right?
You got that right.
What does that mean for those individuals and what does that mean for our system?
For the individuals, many people are already quite hesitant about moving into long-term care. It’s seen as the last stop. That your last stop came considerably sooner than the average person is already very difficult to adjust and that you’re surrounded by people who are a lot more frail than you can be incredibly isolating. The worst kind of relocation is a relocation where someone was forced to go there without any proactive choice and decision-making. For somebody who was nowhere near recognizing that, “I’m starting to get more frail. Maybe it’s not going to work out for me to be here for long,” who’s been going through that process because they’d been going on a slow decline in their health. For somebody who didn’t go through that process, they end up in long-term care going, “How did I get here? What happened? Why am I here? Why am I amongst all of these individuals who are significantly sicker than I am?”
We talked a little bit about the individual’s reaction there. What does it mean for our system of elder care that we have people who are in long-term care sooner than they need to be?
It doesn’t sound very efficient. I don’t like to use the word efficient because I feel that efficiency has been driving all of our decisions about relocation and that has created a situation where bodies are moved into beds for efficiency’s sake, versus people being moved into homes and spaces. I hate to even engage in that form of a discussion, but if you’re going to go there and you care about efficiency, let’s say it doesn’t sound very efficient to put somebody in an expensive institution that they don’t need.
But as I said, efficiency in and of itself should not be the only driving force to the way we are thinking about relocations and thinking about older person’s needs. I think ethics of care, being a caring society, is an important philosophy. If we took that philosophy, who would accept that it’s okay to say to somebody, “Here’s a list. You don’t even have time to view these places. Tick off three. You’re going to get a phone call. We don’t know when. When you do, you better say you’re ready to go because if you don’t, sorry for you, but we’re taking you off of this list for six months.” Who would accept that?
If you had the relevant policymakers in front of you right now and they asked you to pick three changes that would make the most impact, what changes would you choose?
Absolutely and unequivocally, I think we need to start looking at more creative housing models at the intermediate level that is publicly funded that give people at a semi-autonomous level of functioning who have limited means and some choices. I would also say that making people move in 24 hours or make decisions in 24 hours and move in 72 is unnecessarily punitive. It’s not outrageous to tell somebody they have a few more days to make a decision and to give someone a week to move into long-term care.
Part of the reason for that issue is that long-term care homes only get paid for bed occupancy, so they’re very unmotivated to give people time to move in and have a bed remain. If there were funding cushioned to allow for a time of relocation, there wouldn’t be the need for this form of pressure. Third and I don’t know if this is a quick fix, but I certainly would like to know from them what an ideal move looks like. I’d like them to parallel that with what happens in relocation and see that probably not one thing they said happens in reality when you need to relocate to a public long-term care home system.
That’s a nice way of asking us to put our guiding principles in front of us and say, “Does the system we’ve built make sense?”
I think just the language of relocation makes it something different than what policy decision-making age is doing. We move, they relocate. I move posts or even like my parents may downsize, but these people are relocating. There’s a degree of separation and its variance there and expectations, which I think when you said, “It’s not about people moving to homes, but bodies moving to beds.”
It’s actually interesting. You picked up on that because I use the word relocation to even be slightly more progressive. When you go into the practice world, the word that’s still being used is placement. People are being placed somewhere, which I do believe, unfortunately, is true to what happens. It’s a pretty sad statement on the way we view relocation.
It tells you who the actor is in the system. It’s not the person who’s moving. I am at the end of my list of questions. Did you have another one you wanted to spin off?
I don’t think so. I missed a bit there, so I’m not sure what was covered, but is there anything that you want me to add, Tamara?
We talked a lot about relocation and we talked a lot about what happens at the frontend with the move. Part of it also is what happens once the move has happened. Some of the challenges around long-term care being more of an institutionalized place for bodies have also to do with a lot of philosophies that drive care within long-term care. Many of them are about risk management. Decisions are being made about what people can and can’t do based on risk. From, “Sorry, I know you really like your bed, but you can’t have it here because it’s not safe. You might want that dresser, but there’s not enough space for you to maneuver between the dresser and the bed. Sorry, you can’t have that.” “I know that you like to get yourself up and dressed, but you’re at risk of falling. Sorry, you can’t do that anymore.” You lose a lot of control. There’s not a lot of flexibility. The idea of minimizing risk is far from what happens or what drives decisions in long-term care and that also makes the adjustment to the relocation on the other side so much harder than it needs to be. It’s a harm reduction approach instead of a risk management approach.
Can you talk about how this applies to people who are dealing with like substance use? For someone who wants to be able to have a drink to excess, what happens if you’re an older adult experiencing alcoholism and you need long-term care?
None of us in this call have ever had a drink before and would ever want to have a drink when we grow older.
We don’t know about alcoholics who have their own homes and live in them.
If this is where I think some of the more alternate wet shelters or harm reduction housing projects in the area of homelessness have something that long-term care could learn about, which is if you have somebody who drinks excessively, how do you minimize risk to themselves and somebody else? Rather than trying and forcing abstinence on them or in many cases, what will happen? Remember, an older homeless person who is using substances is often they’re at a less frail stage.
They might leave with a friend for the evening to go out while someone might no longer allow them to leave the premises when we know that staying connected with the outside world helps you adjust. Being shamed, being talked about and potentially being told that this place cannot manage you. You are not complying and you get kicked out of the only place that you actually can reside in because your care needs are so high is another reality that happens. In a way, for a homeless person who might also have a substance abuse issue or a mental health issue, the exclusion that they’ve been living with their whole lives gets played out once again in long-term care. Where the bad resident, the resident that makes trouble, the resident that shouldn’t be there in the first place.
I think in your study, you found a couple of examples of where it worked a little bit better. What elements contributed to that?
I think it’s philosophy really of harm reduction. A philosophy of a place that allows someone to go off if they don’t come home for 42 hours, normally you’d lose your bed in long-term care. You can’t leave for more than 24 hour period without serious permissions, but let them back and you don’t make a big deal out of it. You make things safer for an individual. You still allow yourself to see them as a person who has certain habits that you might not necessarily understand but who’s still very deserving of being there. It’s about a philosophy of personhood and appreciation for people as adults making choices and not being necessarily punished for them and flexible rules around leaving.
One of the things I really liked about your paper at first, when I started reading it, I thought maybe I wasn’t going to like that. It was that you spoke with the people, the administrators who are helping people get into long-term care. Because relocating is this rushed experience and you think of these advantages. I had always had this preconceived notion of administrators with horns and a tail but the humanity and the amount of care that this handful of people anyhow, really were putting into finding the right place for the people that they had to find homes for.
Having arguments or pushing boundaries of what was acceptable or allowed, according to policy. The humanity of those people come through in the paper was enlightening as well, because you see how their hands are tied and the amount of labor that goes in. It would be easier for them to help push along someone into the first available bed but they were trying hard to do their job with integrity and to find people real homes and not just beds.
I’d say that the card that they all shared similarly because they certainly didn’t all have the same level of training around homelessness and aging was a person-centered philosophy to their work, which purportedly is a guiding principle in long-term care. I don’t know where it went when we think about relocation, but if you Google the different value statements of publicly funded long-term care homes and the Ministry of Health and Long-Term Care, you’re going to see person-centeredness everywhere.
How do you rectify that disconnect if it’s supposedly in policy, but we’re not seeing it there in practice? What are leavers available to change that?
If individuals on the ground who were trying to enact person-centered care were invited to tables with policymakers, who are creating the policies supposedly to support that in the funding packages. I think some of those gaps would be identified. Even the small things that I mentioned like if you give us a little bit of a cushion when somebody moves in, we can let them move in in a few days and not lose the resources that we critically need, but also be a little bit more person-centered inhumane. If a person is missing for 24 hours and 72 hours, and we also don’t lose our funding for that, then maybe we can be more flexible. These are the reasons why people might be exiting and entering long-term care. I feel that if everybody who had their different vantage points could sit around a table and unpack how one implements this, we’d be a lot further along.
It sounds like if efficiency, like you, said, we don’t want to go there, but if we do go there. If efficiency has taken not at the not, we have to a microscope, but more like of a telescope. We look at the whole system of people moving in from not in long-term care whatever their situation may be and into long-term care and staying there and having that long-term experience. It would be more efficient to have the relocation process go more smoothly to extend home care what’s available in-home care at the frontend that the long term and that doing this again in a few months isn’t going to happen because that’s not efficient. It’s not efficient to have to keep doing this for people and to keep ending up dealing with police and social workers in hospitals because there’s some ruckus that’s to end them up back into the system because they weren’t able to stay in the long-term care situation that they had been flopped into previously. It seems like efficiency isn’t being looked at for the long haul. It’s a narrow bottom line, I guess.
I think Robbie said this, efficiency from whose standpoint. Are we just looking at the efficiency of the system of the health system? Are we looking at all of the different partners and thinking about efficiency more broadly? Are we just looking at cost in terms of health dollars to paid workers, or are we looking at cost of people taking time off work or the hours that they spend running around caring for relatives? It is also about our vantage point. The really important message is we’re very systems-driven decision-makers and we have very systems-driven policies for relocation.
I think that this is great. If there’s nothing else that you want to add. There are so many excellent statements.
That sounded like a good punchline to close on. Thank you so much, Tamara. It was great having this conversation. I appreciate your insight and the research that you’ve done on this. I’m glad to be able to center those questions. I said the policy doesn’t meet practice, but you framed it a little bit better by identifying policies that prevent the practice from being in line with the values that are stated. It’s, “Values don’t meet practice and policies in the way.” I think your ability to surface those specific policies can help build some of those bridges you talked about.
Thank you for the opportunity to talk about something I’m very passionate about. I know that my plan unless things changed severely is to save enough money so that I can opt-out of the public system and relocate the way I want to, which is a pretty sad thing for a social worker to say, but that’s where we’re at right now.
Robbie, that was a punch in the gut to close the interview.
That was a searing indictment.
We’ve heard all pandemic-long that long-term care was in dire straits but when you dig under the surface a little, you start to see why. These are problems that go back much longer than March 20, 20.
I didn’t know much about the details and certainly not about the admissions process but she brought us a few interesting solutions. Some relatively low-cost solutions could be trialed and tested. She talked about increasing the time for an individual to choose what unit they’re going into and that would require funding the empty beds. It does increase some friction. It does have some costs, but maybe it makes a difference. She talked about expanding the suite of allowed home care services so that perhaps someone can access services before they start to degrade and prevent some of that degradation. This is the thing where you can try all this. You can say, “We’re going to try this out in one place and not in another and see if it works and measure the outcomes.”
If anybody out there reading wants to try this out, please get in touch. We have a network of researchers who would absolutely love to run this evaluation for you and see if we can use some evidence to make a better world.
School of Social Work at McGill University
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