‘In Dialogue’ Episode 21: Providing Compassionate and Equitable Care to Unhoused Patients

Introduction
CPSO presents ‘In Dialogue’, the podcast series where we speak to health system experts on issues related to medical regulation, the delivery of quality care, physician wellness, and initiatives to address bias and discrimination in health care.

Dr. Saroo Sharda (SS):
Hi, everyone. Thank you for joining us In Dialogue. I am so honored to host this very important episode on providing safe, compassionate care to unhoused and precariously housed patients. We have very special guests today: family physician and addictions medicine specialist, Dr. Claire Bodkin; and community outreach worker, Marcie McIlveen. Both Claire and Marcie work to provide safe opioid supply and support to people who are living with addictions and substance use in addition to challenges with housing and shelter.

Before we begin, I just want to make a note and emphasize that the subject matter of this episode may be challenging for some listeners, especially if you or someone you know have previously experienced mental health challenges or addictions. We’d like to let you know that help is available for those who may need it and we’ll be including some information and support resources on our episode page. If you do need to use those, please do and pass them along if you know someone else who is struggling.

So Claire, Marcie, I’m going to start with asking a little bit about your work at the Support and Safer Supply program, the SASS program in Hamilton, Ontario. Can you tell us a little bit about the work that you do there and the kind of folks that you’re working with and some of the challenges that they might be facing?

Marcie McIlveen (MM):
I’ve been with HAMSMaRT [Hamilton Social Medicine Response Team] Keeping Six for three years. I’m program director now. I come to this work as a person with lived experience of trauma created by the hospital and health care system. I’m someone who has poly substance use disorder and has experienced homelessness and precarious housing. The reason I share that I’ve gone through this stuff is it allows me to approach this work in a way that if I hadn’t experienced that, I think I would approach differently.

I get to walk with people. I think a big part of what I do and what we try to do is not have predefined goals and outcomes for folks and we just meet people where they are in a way that allows them to be there and walk in the direction they want to, as opposed to meet people where they are, and take them somewhere else. We spend time with them. We get to know them. We build relationships and community. I think a big thing that helps in regards to health care in general, and in my experience, is having a community, as opposed to just having a place or an office or a doctor you see once in a while, but you don’t really connect with or have that relationship with. For example, today, we had clinic and we have food and we have like employees and we employ patients and we have patients that volunteer and we have other community members to come in and they like cook food together and they eat together and see their doctor as they’re like eating and hanging out with their friends. And prior to that, like we worked with our patients and community members that maybe don’t come to clinic, but come to our other programs and work with them in developing what they need. Write a report that outlines what they need and we’re able to do that because we’ve built trust. We also have like outreach programming that we do on Sundays. We have art programming that we’re part of. We do peer training, which is coming up very soon, where we do peer support training for patients and other community members that access services and that leads to like some people end up with job contracts. Other people just want to do peer training to look at their own stuff and figure out how to be a better support to the people around them and to support themselves.

SS: I was so struck, Marcie, by everything you said actually, but particularly when you were talking about how do we walk with people to get them where they think they want to go versus having predefined goals. And as a physician, that is not necessarily something that we are taught to do. It almost feels, in some ways, diametrically opposed to the traditional biomedical model. Like we have to know the answer and somehow we must be right.

And I think what you said about the lived experience of trauma from hospital and the health care system is something that we don’t necessarily appreciate as physicians, and yet it is a very real phenomenon, particularly for folks who are dealing with all kinds of different struggles, who are marginalized for lots of different reasons. This idea of walking with and not having a predefined goal – was that an important concept, personally, for you, in recovering from some of that trauma and doing some of that healing?

MM: I ended up in the mental health system at a young age. I started using substances around the same time and started with opiates. Around that time, we did some art therapy stuff that the doctors then analyzed. I thought I was just drawing pictures. They didn’t tell me someone was gonna look at it, but everybody came to me with interventions. I’m now in college and I’m learning methods of intervention and I get frustrated because they always came with interventions. Because what worked for somebody somewhere is definitely going to work for me. I’ve been formed under the Mental Health Act over 50 times in my life and I’ve gone to residential treatment 15 times in my life because it was always going to work. One thing I do appreciate, that I don’t actually say often to like the physicians and people in my life is that as painful as some of it was, it kept me alive when I couldn’t.

What’s central for the work I do, and the only way I’d be able to work in any form of health care is if we did it in a way that allowed people to make their own path. I think there’s a huge difference between providing intervention and providing involvement. That allowed me to like actually look at myself. A psychiatrist said to me, “How about you take responsibility?” It sounded harsh, but it’s what I needed to do and no one gave me the opportunity to take responsibility because they always put me in a hospital or put me somewhere until I was well enough to be somewhere else. I’m hoping future generations of health care allows people the chance to like take ownership and speak up for themselves and are heard. I think we just need to listen instead of direct.

SS: Thanks so much, Marcie. Claire, do you want to say a little bit about your work with SASS?

Dr. Claire Bodkin (CB):
Initially there was one doctor who had a clinic and worked with people who use drugs, a lot of whom had tried opioid agonist treatment (OAT) without it working for them. Because our drug supply is illegal and unregulated, people were getting more and more sick and so he finally was like, “Okay, I gotta try something else.” Some physicians in other parts of the province started prescribing what they were calling ‘safer supply.’ In Ontario, that means prescribing usually Dilaudid, eight milligram tablets for people to take in hopes that they are able to reduce how much they rely on the illicit drug supply. He started doing that shortly before the COVID-19 pandemic. His clinic shut down because of the pandemic precautions.

At the same time, Keeping Six, which is the Hamilton Harm Reduction Action League, were running a drop in program and were told the building shut down. That worked for those of us that had a home to stay in. We could stay home. We could access our health care providers through the phone or the internet, but people who are deprived of housing, people who are living outside, they did not have that luxury and if anything, we’ve seen over the course of the last few years, how many people were pushed into homelessness and housing deprivation. The groups started to do some outreach together, initially like three times a week to visit patients and people in encampments and shelters and other places. That sort of forged this really wonderful relationship between Keeping Six and HAMSMaRT and is also when we were able to hire Marcie, initially, as the outreach coordinator. She came on as a part-time, 12-week contract like three and a half years ago now.

Between Keeping Six and Marcie and Tim collectively, we said, “Okay, we would really like to expand the safe supply prescribing that we’re offering.” We started the clinic in January of 2022. After three months, we were fortunate to get some funding that expanded Support and Safer Supply Clinic. Since then, we’ve been able to grow the program. It includes clinics with two physicians working five half day clinics a week plus drop in, street outreach, peer support training – all of the wraparound things that we’re able to support people with in terms of building community and feeling a sense of care in their community.

SS: Amazing and congratulations on the grant and getting funding because we all know that that can be a real uphill battle. Can you both talk a little bit more about how being precariously housed or deprived of housing affects people’s ability to get the care and treatment they need?

MM: I don’t speak for everybody that’s precariously housed or unhoused or deprived of housing. I just want to be clear on that like everybody’s barriers, challenges and experiences are different. I know from some of the folks I work with, and in my own journey, the barriers sometimes start or end with how they’re received. So if someone has a medical appointment and they miss it or they show up late or they don’t phone and the first thing they’re asked is like, “Why didn’t you come last week?” Or “Why did you miss appointment?” Or “Why have you missed this appointment with a specialist like a few times?” Sometimes you’re just not gonna go back because instead of like, “Why did you miss it?” I think we need to start with like, “Thank you for being here today.” Let’s start with, “Thanks for showing up.” If you asked my family doctor, I’m probably one of the worst people for like scheduling appointments, not cancelling and not showing up and I sometimes still do that today.

And also when you have to choose between leaving your stuff and risk theft, vandalism from housed and unhoused folks…There was one situation anecdotally I can share – a patient that was having surgery and while they were in hospital, all their belongings were thrown out by the city – after the city was informed they were having surgery. So it’s like what do you choose and what are your priorities? Someone’s health should be a priority; however, like your priority is eating, your priority is having a space to exist. You can go to all the appointments in the world and have the greatest health, if you have nowhere to exist, what does your health matter?

But the biggest barriers are how we’re treated when we do show up and lack of resources. That’s why I love that we have drop in. On Thursdays, we have like takeout meals, like bagged lunches and stuff. And we have ways to connect, and we have an on-call number that people can call or they can get someone else to call for them. There’s like different agencies and people that help support patients to call because not everybody has a phone. We give out cell phones. I’m not asking every single doctor that hears this to like start buying cell phones and food for your patients, but understand that they need stuff. I know when people go to emergency like…I had a disagreement with a nurse because they didn’t want to get someone a sandwich. I’m just like, “They’re hungry.” I get like maybe they need to have a procedure that they shouldn’t eat, but if you don’t feed them, they’re gonna leave.

SS: I actually think these anecdotal experiences are so important and powerful for us to hear about because it really underscores the gravity of the things that you’re trying to weigh. If I leave, my stuff might not be there when I get back. That is a pretty stark choice that folks are having to make and I think as health care professionals remembering that is actually really important. Thanks for sharing that.
What about from your perspective on the health care provider side, Claire?

CB: The first thing that I am always reminded of is that often as health care providers, we are so downstream from a) where things started and b) where like things need to be repaired. We know that in Hamilton, for example, where we work, that about 24% of the people that are deprived of housing in Hamilton are Indigenous and that is because of colonization, people being forcibly displaced from their land and then all of the ways in which colonization has acted to separate people from their families, through residential schools and the Sixties’ Scoop and CAS [Children’s Aid Society]. We need to be repairing the harms of colonization so that we don’t end up in this place where we have so many people that are deprived of housing, that are struggling with trauma.

We also are working within a constrained system. We have a limited number of appointments. We know in Ontario, there’s no OHIP coverage for people that don’t have a valid OHIP card or insurance. There’s a shortage of affordable and supportive housing. It’s obviously hardest for the person and the communities experiencing it, but it is also hard as a physician to know that like the thing that would be most helpful for this person who, say has chronic wounds that aren’t healing, would be like food security, nutrition and a safe place to live. My doxycycline prescription is not really going to solve all of these bigger systemic issues that have come to bear on this person. So I think that’s one thing that’s helpful for physicians to remind themselves of and to learn about how those systems and structures are shaping the health of the people in front of them.

In terms of other barriers – how are people received. Some people that I see as patients would rather die than go to the emergency room or be admitted to hospital and that’s because people are treated really terribly if they look like they’re deprived of housing or they are people who use drugs or they have something on their chart about that that gets flagged to whoever’s seeing them as they come in. I think the fragmentation of care. We see people with complex medical needs. So for example, if I see somebody who has endocarditis and they need to see infectious disease, a cardiologist, a cardiac surgeon and somebody for their substance use disorder and all four of those appointments are on different days, and they’re deprived of housing, like that’s just an absolutely untenable ask. We really need to be thinking about how we can provide one-stop shop integrated care to people. The reliance on technology – we use regular texting in our program for on-call line and a 1-800 number, even though it’s less secure because that’s not accessible to people. We need to offer options that actually are accessible and work for them, along with explaining the risks of those options. I could keep going on about the barriers – not having universal dental care, not having universal PharmaCare, the below social assistant rates, but those are some of the salient ones that come to mind.

SS: You both talked about the importance of how someone is received when they do show up and the assumptions and the stigma that still exist, whether it’s written on the chart or whether it’s implicitly embedded somewhere in our unconsciousness or our consciousness. What do you think has contributed to those assumptions and those stigmas around folks who are deprived of housing, who are using substances? I think some of how folks are received is deeply rooted in the assumptions that we’re making about that person, based on very little information that we actually know about them.

MM: I was an aggressive patient due to a mirage of reasons: past trauma, past history, just being a system child or teenager, being a person deprived of housing at a young age…but that never goes away. I think I was like a year into my like wellness journey and I went to the hospital for physical pain. The triage nurse called security because on my chart, it said I was like this combative person. At the time, I was, I think 90, probably 92 pounds, living in a halfway house and I just wanted relief for the pain that I felt from a fall. And I, I just took off. Because that stuff follows you. And it’s how we chart and it’s the language we use, like ‘non-compliant patient,’ ‘drug seeking.’ Like, I think when we look at what people see as drug seeking behaviour – and I’m not saying it never exists – but I think people are solution seeking. And for them in the moment, the solution is the substance. And we forget that.

I think like a lot of times, we forget that people use substances for euphoria and other people use as a solution to like some other bigger thing they can’t maybe name. We’re afraid of what we don’t know. We’re sometimes unable or unwilling or unsure of how to get to know it. There’s no textbook that’s going to describe stuff. You can know me and you can know my story, but that doesn’t mean you know the person beside me’s story.

I think, with substance use, stigma and fear, it’s because we’re only told the bad things. We don’t see the humanity of people that use substances. We don’t get to know who they are as a person because we’re shocked by what they’re choosing. The relief they choose is different than the relief another person chooses. We try to combat that is like we have a student interest group at McMaster with the med school, but they come out on outreach. They bake cookies and they get to know people. When you see someone that’s deprived of housing in an emergency room, don’t assume that they’re just there to get warm. They actually probably have a medical need and sometimes warmth is a medical need. I think being outside freezing is bad for your health.

Although I’m not cool with how people are treated in the health care system or how I was treated, I totally at the same time understand fear and ignorance. I also understand if you’re affected by someone’s mental health or someone’s substance use in your family or friends. Normally, people go one or two ways: either love develops or empathy and compassion for people that use drugs or they get really angry about it.

SS: I think we have a responsibility as health care providers to approach with compassion and respect and I really appreciate, Marcie, what you said about dehumanization because it makes me think about what Claire was talking about earlier about colonization and the intersectionality of so many of these issues. All of that was an exercise in dehumanization, similar to what you’re describing in some of your interactions and I think we sometimes forget about the importance of the words that are written down and the gravity that the chart can hold. As health care professionals, we have control over the language that we use and the way that we come back to humanizing others and ourselves. Do you want to add anything to that, Claire?

CB: There was an interesting study and they essentially did a chart review and looked at if stigmatizing language was used in a chart versus less stigmatizing and more neutral language with respect to somebody who used drugs and how that correlated with being offered and initiated an opioid agonist treatment. The patients who had lower levels of stigmatizing language and higher levels of neutral language had higher rates of being on opioid agonist treatment or like having that initiated in the hospital and part of that may be that if you have a provider that has that knowledge, they will be able to prescribe the OAT and use language that’s more respectful and less stigmatizing. I find it a useful research paper because it highlights that these are things that have direct consequences on patients actually receiving the standard of care that they’re entitled to in our health care system.

SS: I know which paper you’re talking about, Claire, and I think there’s been similar studies looking at when patients are described along racial categories, and some work around sickle cell patients in crisis, who are most often Black, and how quickly they get their analgesia and some work around stigmatizing versus non-stigmatizing language, including the language of being drug seeking that you mentioned, Marcie. I wanted to talk about another study that you were involved in, Claire. I think it was a Hamilton-based study, where you found that the average age of a person who died in precarious housing conditions last year was 38 and in contrast, the city’s average life expectancy is 81. Is that something that we’re seeing across most major cities? We’ve probably talked about why that may be, but anything else that you might want to add, in terms of why there is such a sharp contrast and what more we really should be doing?

CB: We’re thinking of it under the category of quality improvement, but an ongoing project to track the deaths of people while they’re deprived of housing in Hamilton. So every six months, we release updated data because I think you start with documenting it so that then you can move on to understanding the causal pathways and the why so that you can move on to implementing the solutions. As we are fond of saying in research, correlation is not causation. It is a complex relationship, so it’s not that homelessness causes premature deaths – at least not alone – but that all of these different things that come to bear on people who are deprived of housing and also come to bear on people’s health and illness.

We know that about 20% of people who are deprived of housing identify as LGBTQ and that homophobia and transphobia contributes to people either being kicked out of housing or not able to obtain housing. So all of these things come to bear on making people homeless. I am not aware of any other group that has that marked difference that cuts your life expectancy in half and we see a few things. One is that people have pretty high levels of contact with the emergency department in the 30 days before they die. So that potentially represents a missed opportunity for – I know, Marcie, you said you hate ‘intervention’ – but for connecting with people and offering them something different than what’s ahead of them otherwise. Another thing is that there are a lot of overdose deaths. What are we doing about the unregulated drug supply? And how are we, given the unregulated and toxic drug supply, providing places for people to use where somebody can be there to respond and intervene? There’s lots of trauma, injury and assaults that also we’re seeing because people don’t have a safe place to go.

All of this to say that I don’t think there’s one thing that we can do, but I think that even though it doesn’t provide enough proof for it to be a causal association, I think just using our common sense can tell us that being unhoused is bad for your life expectancy. What our data is showing is just how bad it is and to understand that people, in fact, do need housing in order to be healthy, but also just in order to live. You need protection from the elements. You need places where you cannot have to use drugs, furtively, alone, quickly. You need to have the ability to have a home and form connections, relationships, a sense of belonging and a community, or not having all of those things contributes to a shorter life expectancy for people. That project is ongoing. We just released our fourth set of data. As of right now, we plan to look at that indefinitely and we’re thinking about ways of expanding our community reporting tool.

SS: I want to thank you both so much, not just for spending time with us today and sharing your expertise, but just for the really important work that you do every day. I really hope that we get to be in conversation with you again. Thank you so much.

CB: Thank you so much for having us. It’s really lovely to be able to chat.

MM: Thank you so much.

Conclusion
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