Focus: Adults in the Room - Lost Patients Live: First-Person Stories from Seattle's Mental Health Crisis

Episode Date: June 26, 2024

Lost Patients compares the system for treating mental illness in America to an elaborate house, where every room, hallway and staircase was designed independently by a different architect. So what is it like to be shuttled from room to room? What sorts of tradeoffs are doctors working within this system forced to make every day? And what might it look like to design care around the needs of patients?KUOW and the Seattle Times convened a forum at the Seattle Public Library to hear perspectives and answer questions. Featured guests included: Laura Van Tosh, patient advocate and founder and convener of Mental Health Policy Roundtable Carolynn Ponzoha, patient advocate and content creator who goes by @psychotic.in.seattle on TikTok Timothy Jolliff, acting senior director of clinical programs at the Downtown Emergency Service Center in Seattle Dr. Paul Borghesani, associate professor in the Department of Psychiatry and Behavioral Sciences at the University of Washington School of Medicine You can find resources for people with mental illness and related stories from The Seattle Times and KUOW here: https://www.seattletimes.com/component/lost-patients-podcast/https://www.kuow.org/podcasts/lost-patientsSee omnystudio.com/listener for privacy information.

Looking for a great place to stay for that big trip. Maybe you just want to find that right restaurant in downtown Seattle. More and more people are turning to social media for these answers. But is that affecting the experiences we're actually having? I'm Dyer-Oxley and on the next episode of Meet Me Here, I'm chatting with travel expert Rick Steves and two Seattle girls to help navigate a world where everyone can be an online expert. Listen to Meet Me Here on the K-U-O-W app or wherever you get your podcast.

Hey, this is Will James. In the weeks since the last episode of Lost Patients came out, we've gotten hundreds of messages from across the country from listeners who live with serious mental illness or have family members who do or work with patients who do. And a lot of these messages say the same thing, that the problems captured in the series feel achingly familiar, that they live these realities. and they want to know, what do we do now? How do we fix psychiatric care for people with serious mental illness? Well, last month, in May 2024, we had a chance to dig into some of these questions

at a live event by KOWW Public Radio and the Seattle Times. It was at the Seattle Public Library right in the heart of downtown Seattle, where many of these failures are very visible. It was a conversation between us, the reporters who made the series, plus some experts, people who live with serious mental illness or work in that field. And what we're about to share with you is a recording of that live event. In this conversation, we dig deeper into some of the ideas in lost patients, like the role of involuntary commitment and the relationship between drug use and mental illness. We reflect on making the series and explain why we told this story the way we did. We answer some really insightful and sometimes challenging questions from listeners,

and we look to the future and try to glimpse how mental health care might change. This feels like a tiny sliver of what has been and will be a much longer and broader conversation. And we wanted to let you in on it. So here's that recording, edited for length and clarity. The evening was moderated by my colleague at KUOW, Libby Dankman. From KUOW and the Seattle Times, welcome to the Lost Patients Live Show. I'm Libby Dankman. Our first conversation involves KUW's Will James, host and reporter of the podcast, Lost

Patients, Sydney Brownstone, and Investors. reporter for the Seattle Times and host and reporter of lost patients and Esme Jimenez, a reporter for lost patients and now a senior reporter at the Boston Globe. Thank you, everybody, for being here. And thanks for the work on the show. I want to start with you, Sydney. Your reporting was sort of the impetus for this whole project. Like, you were wandering around Northern State Hospital. You stumbled on the cemetery that turned into a great story in the Seattle Times. And then you continued reporting on the history of mental health care for the show. As we are trying to wrap our minds around how to fix today's problems with the mental health safety net, why is it important to understand the past?

Thank you, Libby, for asking, and thank you all for showing up. This is really incredible to see so many people on such a lovely day, and it just speaks to your passion and, yeah, dedication. So why is history important? It's because as a reporter, as a homelessness reporter, you can't help, but be slammed in the face all the time by these old concepts that keep popping up over and over again. For example, a couple of years ago, I was reporting on a string of deaths in the King County Jail, and several of the deaths involve people with serious mental illness, and also suicide is the most common cause of death in our jails in Washington State and nationwide. So several of these deaths were suicides.

The thing about suicides in jail is that most of them are totally preventable. And I had stumbled across this issue in the King County Jail where if we had just tweaked the design of the beds a little bit, it would prevent some of the suicides I was seeing. But I brought this issue to local politicians, and there wasn't a sense of urgency about it. And I remember being on the phone with one politician in particular, and it being a really, really tense conversation, the type of conversation that ends where a politician hangs up on you and says, good day. And I kind of fell into a deep depression after that. I was just wandering around the house going, why does no one care about this? Why does no one care about this?

And I called up suicidologists to ask. And I spoke up to this one suicidologist. And I said, this problem is preventable. Why is it happening? Why do politicians not care? And he just very off the cuff said, well, it's a eugenics mindset. And a light bulb went off in my head. A eugenics mindset.

So many of the issues that I'm covering right now as breaking news, the world unfolding as it happens, actually have their roots in very old ideas about who is productive and who is unproductive, whose life is valuable and whose life is not. And that's why I was really grateful to do this podcast because I felt like we could kind of peel back the story a little bit and talk about our observations as journalists who see this immense amounts of suffering and also this immense kind of callousness on a daily basis. Esmi Jimenez, you spent a lot of time with Heidi Orand, who struggled with the decision at Western State Hospital

to discharge her son, Adam. And Adam's story ends tragically with an overdose on a sidewalk in Seattle. Your conversations with Heidi are incredibly raw. How do you think about approaching that situation and how to have an effective exchange and help her share the way that you did. I try to do a few things. One, I've always been very curious about trauma-informed reporting, which I think has become something that more reporters are mindful of,

which is just doing a lot of media literacy up front, telling people like, here's what's on background, here's what off the record. Here's what it means to have your story on the front page or in a podcast. Just anything that I can get to kind of get a sense of where is this person at, are they in a place where they can share their story? But with Heidi specifically, I was just trying to be very mindful of at any point, if you don't want to talk about this, at any point, if you want to stop, let's get some water, let's take a break, and then let's start talking about it again. So we just had multiple conversations over many, many months. And then I always would ask, you know, do you have any questions for me? Is there anything that you're curious about? And we would have conversations. around how Adam's going to be portrayed because that was very important, right? Honoring his death, being mindful that this is a really heavy story.

And here it's, you know, a couple episodes, but for her, that's the rest of her life. Not your kid. For politicians, right, we go after that and we ask questions. It's fine of the hang up. For other people, no. Like everything that they need from us, whatever we can do to make them feel safe and comfortable. That's the most important thing.

Yeah. Will, as a listener, and I'm hearing what eventually happens with Adam, that he's dropped off in front of the homeless shelter in downtown Seattle. We don't even know if he ever actually went into the shelter. I feel a lot of outrage. And I found myself, as a listener, looking for somebody to blame. Like, that was my immediate reaction because I was shocked at what had happened to Adam. I think this project in another group of journalists' hands might have become more of a blame game

and might have become more of a finger-pointing situation. How did you try to focus on accountability, but without it turning into a blame game? Yeah, if we wanted to find a bad guy in Adam's story and hold that person up as the reason Adam died, we absolutely could have told the story that way. And we did include Heidi, Adam's mother, does to an extent think that there's a bad guy,

and she expressed that in the episode. But I didn't want to give us a scapegoat because I think this is bigger than any one person. And if you hold up a bad guy or one law that is the problem, the reason that all of this is breaking down, it creates a temptation to say, oh, if we fire this person or if we change this law, then it's all going to be better. But it lets the rest of us off the hook. because we are all part of this. It's not one bad guy. The people who work within this mental health system are often trying their best

within a structure that limits how effective they can be, a structure that predates them ever working in this field. And that structure was created over decades, and generations by people like us declaring our priorities when we go to the voting booth, when we talk to politicians. And I didn't want to distract us from that. I wanted Heidi's last words in that episode

that we all failed at him to be the words that rang the loudest and the longest in our minds. That's not to let anyone off the hook, but I think it's more important to see this as a structural issue and not something that we can sort of tweak our way out of. Sydney, you explored the history of de-institutionalization, the shuddering of large mental hospitals in the U.S. and the promise of community care that never materialized.

And at a high level, this has really been a massive shifting of responsibility from the state to local counties and municipalities without sufficient accompanying funds. These are decisions that policymakers, politicians have made over the years and promises really that were broken over the years. Did anything that you explored about the history of this issue shed light on how we can have different political conversations today? Well, I think, you know, it was as slow realization as I was working on this story, what factors were most important in deciding to close Northern State?

You know, as you're reporting, you spend a lot of time just kind of pouring over material, and I spent a lot of time in the state archives, and it's really in the writing of the story where I started to put the pieces together. And one theme that kept popping up over and over and over again was cost.

Cost, cost, cost, cost, cost. In the decisions to close Northern State, patients and, you know, what happened to them, their welfare, not really on the agenda as much as how much money are we going to save. And I realized that that wasn't just a theme in the closure of Northern State. That was a theme repeated throughout the history of mental health care and also homelessness. I mean, the very first man who was homeless on Seattle Shores, who, Esmeans written about, I have written about, his fate was determined by how much he was costing the territorial government of Washington State. And so I think that even when you have good

intentions to fix the system, to make things more humane, the more you are focused on how much can we get away with paying the least, it's going to produce human suffering in the end. And I know that there is a pragmatic argument that says, well, you know, money doesn't just grow on trees. These or our tax dollars, we have to spend them wisely. And I think that's a fair argument, too, but I think our default for so long has been, how do we shortchange this? And what would happen if instead we had the imagination

and the capacity to approach it, not from what's the least amount we can pay for this, but what would actually effectively serve the people who need help the most? What if we started there rather than starting from the place of austerity? Will, I wanted to tackle some criticism of the show. Your second episode focuses on the issue of involuntary commitment and how Kathleen, a mom, is navigating how difficult it is to get her son Vinny into treatment against his will.

We also hear how ITA court works and the history of how the modern law came to be. But in this episode, we do not hear the voice of anyone who has been held against their wishes. We do later in the series, but not in this episode. How did you think about structuring the show, this episode, and how it fits into the overall context and the voices that we hear? Yeah, involuntary commitment in the mental health advocacy and policy world is like the most divisive and partisan and complicated issue. There are really dug in political camps here.

You have a patience rights movement that is very much against involuntary commitment. in any form in some manifestations. And then you have sort of like a family rights movement on the other end that is pushing really hard for more involuntary commitment, make it easier. And that's been covered and reported on a lot. And so I didn't want to turn this episode into like this two sides thing,

where it's like, patients say this and parents say that because we've heard that story a million times. What I wanted to do with this episode an involuntary commitment was start with a familiar story of a mom and a stepdad trying to get a son committed and the difficulty that they experience and perceive, but then subvert it in a different way, which is, okay, instead of making this like a two-sides thing, what if we start there and then get to the point of, well, why is this even an issue at all? why do families and patients have to wait until someone is at their absolute lowest point before any of these systems really kick in?

Why are we even debating this? So I guess in the end, I kind of just wanted to take it in a different direction. And also, you know, I'm cognizant of that this is not a news story. This is a six-part documentary. And we are starting at a certain point, and then with each episode, we are layering more ideas on top of what people have heard before and reframing the prior episodes.

And I always knew that by the end in the last episode, we were going to get to a point where the patients and the people with lived experience of mental illness reframing everything that we heard before. And I just kind of wanted to build to that slowly over the course of the series rather than just putting it all out front. Yeah.

We have been collecting your questions for Q&A here at the end of this panel, and then we're going to have another chance for questions at the end of the whole program. So if we don't get to your questions right now, we'll try to get to them at the end of the show. Okay, so this question says, as a police officer,

I struggle with how I can best have. help with change. How do you guys see law enforcement's role in a better, more productive system? In our society, when every other layer of our social structure fails, it comes down to essentially a criminal justice issue. That is where we are comfortable dumping the problems that we don't want to deal with anywhere else. In law enforcement, it is incredibly difficult. We have all covered stories of people in mental health crisis who are killed in interactions with law enforcement.

And when somebody dies in police custody or being shot by a police officer, it is often, not always, but often somebody who's in psychosis or a mental health crisis, those situations are incredibly dangerous. I think in a better society, we would have fewer people hitting that absolute bottom level where they are on the streets, where they have decompensated to the point that they are fully in psychosis. And this problem wouldn't fall on the criminal justice system. That should be the goal.

It is helpful to ask as a police officer, how can I help? But I think the real conversation is, how do we make this not a criminal justice problem anymore? How do we make this a health care problem? Yeah. But the fact that this is a police officer and an audience who feels like this is what they need to ask is, it's indicative of how we have allowed this problem to fall on the criminal justice system too much. But I want to come back to it as well. I think it's an excellent question.

Next question says, do you see any? examples of community health systems that are working in America or elsewhere. As me? There are some programs that actually are incredibly effective. There's a Sotaria, which is a model that's called like a living room model. The idea is that people with mental illness can live together and support each other through psychosis, through crisis episodes. I would highly suggest the episode for invisibilia called The Problem with the Solution.

I talk about this episode all the time with friends. I think it's really well done. And it essentially looks at what it would be like to have a community effort where people talking to themselves is normalized, where people can ask for help without shame, where people are treated as people who are worthy of dignity and they just have an illness. The thing that I always harp on is if someone told me they had diabetes, I would never dismiss them and think about them as failing in some way. One of the things that broke my heart about talking to Heidi was even after some of these episodes, she's still. had neighbors and family members who would say like, well, what did you expect, you know? What did you think was going to happen? And the truth is we all have people like that in our families, in our communities, and shifting that cultural paradigm. That's huge. I don't know how to do that.

But we do have some positive community models that are out there. It's just about scaling them and normalizing them, in my opinion. Sydney, before we go, any positive models of things that you've seen in your reporting or treatment, the kind of programs that work, we only have about minute left, but leave us with something that makes you optimistic. Well, I think about the last episode, and I think about what Carolyn and Lou Middleton say. So Lou's path to healing was not by banishing his voices and not listening to them. It was actually through hearing them and understanding more about where they came from and kind of befriending them in a way. And Carolyn talks about being symptomatic, but being symptomatic as like not a reason to, you know,

be exiled from society? What if there were just help for people when they were symptomatic to go to the grocery store? I am not as much of a subject matter expert as me is or Will is at this point, but I would say that idea that being symptomatic is not something to revile, it is not something to banish, it is something to invite in and to understand and befriend. I think one of the biggest things that I'm excited about that makes me hopeful is opening ourselves up to a wider range of behavior that we can see as acceptable as normal. And I think one of the biggest things I've learned from the podcast is that this is not an us versus them thing. There's no sane and insane. There's not mentally well and mentally ill. It's a spectrum. And I think it would behoove people who are

sane or neurotypical to look at experiences in our lives when we have a, been in altered states in periods of high distress and see that it's not so different from what we call clinical psychosis. And what if we were to have a conversation as a community about those experiences rather than putting people into buckets of, oh, that's that kind of person and this is not that kind of person. So I am hopeful about that kind of cultural change that Asmi was talking about. We're going to bring our journalists back up later at the end of the show for more Q&A. But for now, Sydney Brownstone is an investigative reporter at the Seattle Times and host and reporter of lost patients. Asmi Jimenez is a reporter for lost patients and now a senior reporter at the

Boston Globe. And KU.W is Will James. He's sticking around with me, but he's the host and reporter of lost patients. Thank you all for the conversation. This is the lost patients live show. I'm Libby Dankman here with Will James, and we're continuing our conversation about treatment for severe mental illness that was sparked by the KU in Seattle Times podcast, Lost Patients. Today, our focus is on what works in mental health treatment and how those lessons might help us build something better. Our next panelists have lived some version of the reality described in the podcast. They have lived through psychosis. They have spent time homeless. They have been institutionalized against their will. And they have made their way to their own version of recovery. And both of our panelists

have emerged from those experiences wanting to educate people about what all of this is like. and what works and what doesn't. Laura Van Tosh is a patient advocate and the founder and convener of Mental Health Policy Roundtable, a professional knowledge exchange program. And Carolyn Penzoa is a patient advocate and TikToker who goes by Psychotic in Seattle on TikTok. Welcome, Carolyn and Laura. Thank you so much for being here. So both of you at some point in your stories started to notice things that were

wrong with the care that you were receiving, things that were not working or maybe even causing you harm. What was a moment when you started to realize that the way the system was treating you wasn't working? Carolyn, can you begin? My first experience as an adult, I struggled a lot. I had my first psychotic episode, and after that hospitalization, I just couldn't get it together in school. I was expelled. I was not mentally well. and I was put into an adolescent treatment program, but I was 18, and I said, no, I'm an adult. I can make my own legal decisions,

and they said, no, actually, you can't. So I still don't know how that works, but I had that, like, legal will taken from me, and I don't know that the treatment programs I was in actually did very much good. I left treatment worse than when I came in, and I was in treatment for a year, and I don't feel that a system designed to guide adolescence into adulthood

is meant to deter them in that way. And so it felt like a lost year. Laura, with your interactions with the system, what was a moment or moments when you started to feel this just isn't working and maybe this is actually doing harm? Yeah. Well, first of all, we're sisters in the struggle, okay? I was actually 17 when I first entered the system, as they call it, against my will and voluntarily committed, and in the adolescent services system.

But I didn't know a lot then. Later, what I realized when I was homeless, that I knew in order for me to get out of that situation, and I was homeless when I was 19, and then institutionalized at Western State Hospital, was that it would be up to me. to decide whether or not I was going to get out of the situation that I was in, and that I would get out of it alive. And so I sort of felt that I was in a race to live, and that in order to do

that, I needed to make my own decisions about treatment and services. I made a lot of missteps when I was institutionalized at Western State Hospital, where I was in a seclusion room for a very long time. But I realized that I needed to be the one to get myself

out. And so I figured out how I would one get out of the seclusion room. And that was starting to follow some of the rules, but it was also starting to assert myself as a patient saying, no, I'm not going to take that medication because it makes me feel terrible. And things like that that made me kind of lay the framework for me to get out and continue with my life. You know, I will say that we don't allow people to kind of take those steps in their recovery journey when they're institutionalized. And I wish that we have to create a systems that would allow people to do more of that because I would have been out of the system a lot sooner than I was. Carolyn, I want to ask you a question.

You're a storyteller. You go on TikTok and you go on YouTube and you go on Instagram and you have become really adept at communicating the reality of psychosis in a way that other people can understand it. I've benefited a lot from your work. If you could play editor of the podcast, if you could change something about lost patients or add something to lost patients, what would you change if you could change anything?

I would have liked to have heard Adam's point of view. Sorry, I would have liked to have heard Adam's point of view because I know people like him. And I literally have a friend whose daughter has been discharged from Western State Hospital into homelessness multiple times. And I really would have liked to have heard what he had to say because he seemed like a great guy. Yeah.

I cried during that episode too. Actually, if I couldn't answer that. Same question. Yeah, Laura, please. Play editor. Well, I really think what was missing was anything about patients' rights as it pertains to the organization that we do rely on and should rely on called disability rights of why. They were not mentioned. There was nothing, you know, I'm sorry, but I picked up on that. He asked, Laura. He asked, he's asking for feedback. It's a good edit. I was surprised, actually,

that there wasn't that side, but they are really there to, you know, ring the bell around making sure that that our services are patient-oriented and that people's rights aren't being violated. And that whole area really was just not addressed. And I think is really important because it did beg the question, we know what's wrong, who's doing something about it. And that would have been maybe not the entire answer, but it's certainly a part of the answer. Laura, you've built a career in advocacy around mental health policy. What's something happening in Washington State right now that gives you optimism about the future? Because I entered the system to through an emergency room.

Really, that's where it started when I was 17. I was restrained face down. Fourpoint, which is very dangerous. I really would look at how we're engaging people in the system to begin with, and I am very optimistic about the crisis care center levy that we have here in Seattle. I helped get signatures for that levy. I was really excited about being engaged in the election process for that bill. And now we're waiting for the implementation plan to be approved through the county council process.

And that will help shift our system once implementation begins so that we can welcome people to get help rather than, you know, chase people down hallways. Can I ask a question about crisis care, though? How do we make sure that crisis care does not just become another stop in the churn? You go somewhere, you get stabilized, and then you get released, and then you end up back at square one, and you're in this sort of cycle of crisis, you know? It's still temporary. It's going to have to be different. That's what the point of this is. We're talking about really changing the system and inverting the process that we can actually address issues early on and not have things to sort of fan out that way.

But I really think if we can address things early on that we're not going to see long-term institutionalization. I'd like this to really keep people from being admitted and not on the doorstep of Western State Hospital where there happens to be no room anyhow. So then we have people going to jail. So I'm just really banking on this system, changing the way we look at crises

and actually having them be positive stories instead of nightmares. Carolyn, you've kind of become a spokesperson on TikTok for issues involving serious mental illness. Your account, Psychotic in Seattle, has tens of thousands of followers, and you're often in the position of explaining psychosis to people who have never experienced it,

don't have a connection to it. How do you think the system, mental health care, could improve if more providers understood the experience of psychosis better? Communicating with a person in psychosis is severely underrated. People don't understand there are effective ways to communicate with a person. And I don't think a lot of people ask, how do I talk to them? Like, how do I talk to them effectively? People will talk to people in psychosis the way they would talk to anyone.

And you have to be very careful because if you say a metaphor, it's literal. They're actually going to believe that. So, you know, I would be in situations where I would be having delusions kind of like imposed upon me by nurses and other people because they weren't aware of what they were doing. They weren't aware of how to communicate with a person in that state. And another thing I would say is that there's such a violent image of psychosis. it's made out to be this huge stigmatizing thing when in fact the people experiencing it are more afraid than anyone. And I myself am pretty harmless because I'm too afraid to move.

And the restraints, the seclusion, all of the things that I've been through could be avoided if there were de-escalation techniques or if anyone were to just sit and talk with me and you get this person who's scared. and when they look scared, it looks scary, and you just jump to, oh, they're going to hurt me, I have to restrain them. You're not thinking, oh, they're afraid. That's why they're pacing back and forth.

You kind of have to put yourself inside their mind, which can be hard to do if you're not really aware of what is going on. And that leads me to my next question, which is about forced treatment. So much of our debate about how mental health treatment happens right now revolves around involuntary care. when and how somebody can be committed to a hospital. Both of you have been through that. Both of you have told us about how these hospitalizations have at times stabilized you during a crisis, but you've also both told us that expanding involuntary treatment is not a solution to the mental health crisis. Laura, first to you, help us understand how you think of involuntary treatment as somebody who has gone through it. its role in care. I just think that forced treatment is really just not the avenue that will help promote recovery. It added much more fear and anxiety for me when it did happen to me.

It's also one of the most expensive kinds of interactions that we have with people. Commitment can just create costs on all different ends, including the person themselves. I want to ask Carolyn, what would. a world in which involuntary commitment wasn't necessary look like? I would love to see something that is like community-based. One thing I really like that Laura had said in an interview is that in the community is the best place to recover because I know that's been the most beneficial for me and I know we're getting there. I know we have places. For instance, in my community, we've had a few different types of services that are like centers where you can go. We had one called the Reach

center where you could take classes and you could do job skills. And I actually went there a lot while I was symptomatic. I would go and I would draw and I would be completely psychotic and no one treated me any different. We have the recovery cafe now where they have meals, they have groups, they have meetings. And I'm on the other side now where I'm not symptomatic, but I see people come in who are symptomatic and they're treated with respect and they're not othered and they're treated as equals because that's the kind of community like the recovery community in my area is very tight knit and i just love that like i just wish we had these integrated services that with like the job training and the classes and the groups and all that support and i would love to see more things

like that that brings up something you talked about in the podcast that really i learned a lot from how connection and isolation can factor into the experience of psychosis and recovery. I don't know, that just sort of like opened up a whole new way of thinking for me. I wonder if you could talk a little bit more about that. How do isolation and being connected to other people affect your symptoms or how well you recover? For me personally, when I'm by myself, going through my episodes, it's way worse than if someone is with me. I may be afraid of a person, but in an hour, I may not. And so it helps to have that hour later when there's someone safe with me.

The symptoms are less negative, I feel. Like a lot of my delusions tend to be violent. And when my sister actually moved in with me to take care of me, we would watch shows and she would just treat me like her sister, right? She didn't treat me like I was psychotic. She treated me like her sister. And when scary things would come up, she would just be very kind. And she'd be like, no, no, those aren't demons, you know. And it helped a lot to have someone reassuring me, to offer emotional support, just companionship in any way. It seems to heighten the positive experience and lessen the negative experience. Thank you both so much. And I'm so appreciative of your perspectives, of you being here.

Thank you to Carolyn Ponsoa, a patient advocate and TikToker who goes by Psychotic in Seattle. Laura Van Tosh is a patient advocate and the founder and convener of Mental Health Policy Roundtable, a professional knowledge exchange program. Wonderful conversation,

and I'm grateful for both of you. Thank you. Thank you. You're listening to the Lost Patients Live show from KUOW and the Seattle Times. I'm Libby Dankman, here with Will James, journalist and host

the Lost Patients Podcast. We're talking about how our system works today for severely mentally ill people in Washington State and where things are headed in the mental health care space. And joining us next is Tim Jolliffe, acting senior director of clinical programs for the Downtown Emergency Service Center in Seattle. Hey, Tim. And Dr. Paul Borgesani, an associate professor in the Department of Psychiatry and Behavioral Science in the University of Washington School of Medicine.

Thank you to both of our providers for being here. Dr. Borgizani, let's start with you. You know, lost patients compares our mental health care system to a disjointed kind of house where things were designed by a different architect and each room was kind of built separately. None of the architects talked to one another. And a lot of mental health professionals

have reached out to the team here and said that that resonated with us. that description. How do you feel about that metaphor and how does it manifest in your work? Well, first off. You don't have to agree with the metaphor, by the way. You can disagree with it. I completely agree with the metaphor. I think it's very appropriate. I would defer to someone who has much bigger thing myself, who's Tom Ensel, who's written a book. He's a former director of NIH, and he says that it's not a broken system. We simply don't have a system. And so the way I see this on a day-end kind of day-out experience is that our ability to find the people who know the patient well

and can help the patient are hard to reach. So at night, I work in the emergency room at Harborview. I actually worked last night. And so when we're there and a patient comes in, there's an on-call case manager who probably doesn't know the individual very well. family or friends, if they are available, often are not available, being that if there are any connections, we can't. And so I am in kind of a situation with the patient trying to make a decision for them, and I hardly know them. And there's no one out there who knows them either, and I'm forced to make that decision quickly. And it feels like we should have a greater connection with outpatient providers and services such that I could rely on them to help me make a good decision for this patient. on what would help them kind of regain stability.

The second thing is I have to admit, I also work on the inpatient units at Harborview, and we do tragically discharge people to a shelter and do homelessness. On the other side of this, I do like to point out it does allow us to treat more other people in the sense that if we have our length of stays very long, we can't provide the care to folks who actually do need it.

Yeah. And so it's very difficult, decision from a clinical perspective holding people in the hospital versus making room for others to come in and get treated. We have 66 inpatient beds at Harborview. We can't admit anymore. They are full at 100% capacity about 299 days a year. About 50 days a year, there might be one bed available overnight. So we run completely at capacity. And so we are often just stuck knowing that we have to move folks along so we can treat others and help others. I want to ask you both a question. As a journalist writing about this issue, people want to know about drugs. It is one of the most common questions

and pieces of feedback that I get. I want to know how you think about this issue because it is such a puzzle. Having schizophrenia can make you want to use substances. Some substances can straight up cause psychosis, being homeless can make you want to use substances and schizophrenia can make you it's like this puzzle. I guess I'll start with you, Tim. Are you able to draw clear lines in your work between substance use and non-substance related mental illness? And how do you just think about how these things interact? How does that play into your work? One of the things that we saw particularly during the pandemic with not just the increase in the acuity that I'm sure a lot of folks here witnessed, but just, you know, increase in use and just what that presented in terms

of the additional barrier that I was presenting the team with and trying to help again stabilize this person with the combination of the increased use resulting in increased psychosis, and then for some of our folks also experiencing homelessness, like the combination of all three of those things just really made it more challenging. And it also just kind of prolonged like the start of stabilization for them. So just adding more barriers that we don't need. How does that manifest in the emergency room? Let me answer the more general question, which is just, I think that I like to avoid

the idea that it's either drugs or mental illness. I'm always talking that about it as being both. And the way I like to frame this is whether it be alcohol, cannabis, or even something like methamphetamine, we all probably know people who use them safely. And so one of the first questions patients ask is, why can't I? My friend uses cannabis every day, and they're doing great. And I have to answer that question that, well, perhaps you are more sensitive or because you're talking to me, unfortunately, you have clearly established that you're not able to handle. this drug. So I'm always talking about it as an interaction of the two. There are some lucky individuals in society that can take a lot of substances, even those who are not rock stars. They

can do that and be safe, but most cannot. And so we have to kind of help people understand that just because they're a friend or they know someone who can, can't necessarily do that. So I always try to say it is it's not an either or, it's both. And because you're experiencing psychosis or mania or your depression with cannabis, because you're experiencing that, you really should start limiting that substance because it's probably contributing to your dysphoria. Thank you. Tim, as a care provider to this population, you're interacting with people with serious mental illness.

You also bear witness to this broader conversation. We're having it right now. You see it in the media, in campaigns, you know, politics, whatever, where people are discussing the issue that you have intimate, not. of what are some of the biggest gaps between what you see every day and what the conversation is like in the general society? What I see or what I wish the kind of the larger, like, community was honest about is, you know, quality care costs money and the investment that is needed because the need is so great. Everyone needs to have a common shared goal around

what needs to happen, what needs to be achieved, what needs to be solved. And it's not cheap. And that level of investment is what is needed to push the needle forward and to kind of turn the tide on things. Dr. Borgazani, same question. What's the biggest misconception or delta between what you see in the emergency room and what you hear when you tune into radio or watch television or whatever? If you have time for that, I don't know, you seem busy. the biggest thing that, it's a little thing, but I often hear when someone is in crisis, followed up is, and they stop their medication, as if their crisis is solely about a medication.

And we all know that lots of people continue their medications and go into crisis, and we've heard certainly that medications can almost probably contribute to crises sometimes. And so I would like to change that discourse. It's not that everyone, would be great if they were on medications. Boy, figuring that out is really difficult. And I do a lot of teaching with residents and medical students on that as there is not a one-to-one. If you're experiencing

this, you should take that. That does not exist in psychiatry. And so we have to be very careful of that mentality. And if someone's in crisis, we need to understand the crisis. Yeah. But I think people think there is a pill for everything. I mean, isn't that the way that we talk about medicine in so many ways? or as you say, when they go, you know, into a psychotic episode, they must be off their meds. You know, that's how we talk about it. We certainly heard that a lot, I think, in the 80s and 90s, that it was framed that antipsychotics were like insulin for the brain. There was very prominent psychopharmacologists who are now very much criticized for that sort

of statement. And I think what's happened since the turn of the century is we've recognized that these medications, although very helpful at certain times, also have not just side effects, but they don't have as much efficacy as we thought they did. And so we have to be very mindful and thoughtful in prescribing them. I would say that the best provider that you can ever find, of course, is the one that sticks with you and keeps talking to you and keeps seeing you. Not that expert that you can pay several hundred dollars to a thousand dollars to see. No, find someone who's going to see you all the time and work with you to choose the right medications, that sort of thing.

When you hear from folks like Carolyn and Laura are, lived experience, panelists here who have been through parts of the system. What's your reaction? I mean, how far away are we from having the kinds of resources where we could get to this better place that we've just sort of envisioned with them, where involuntary care is not necessary? How far away is that? Dr. Borgizani? Well, I think you framed the question correctly, which is how far away. It's not something that could ever change just by a policy now, because we have a system that unfortunately prevents people

for getting treatment prior to getting to the point where they, you mentioned the word, enosum, the inability to know that they have a disease. And unfortunately, we have a system now that has lots of folks who get to the point of being decompensated where involuntary treatment is necessary. And if we just stopped it now, we'd be doing a disservice to a lot of people.

that, like you said, though, could take time to change. So we have to think about small steps in order to think that, to get people involved in treatment, think about the treatment spaces, think about the purpose and the connections we can make in treatment, and eventually you could get to a point where we really kind of limit that involuntary treatment. And I hope we would, and I would add that right now we're reviewing our restraints policies at Harborview, and our mission statement is to have no restraints. and this is something that, wow, how do we ever do that? And I'm not sure how to do that yet.

That's what the committee is doing, but that's the goal. The goal is to really fundamentally change things. Yeah. Tim. Yeah. I think the real creation and implementation of post-crisis as an intervention, you know, there's a lot of effort and work on the crisis side of the clinical continuum, and then on the other side, you know, there's the traditional kind of outpatient side.

But there's efficacy of, you know, the post-crisis and transitional part of the continuum as well. And I think, yeah, just more investment and enhancement of that body of work. Because, you know, as people are moving through the continuum, you know, people obviously come back. But, you know, that's where the true stabilization, my opinion, occurs. So folks don't need to reenter a crisis. That's Tim Jolliffe, acting senior director of clinical programs for the downtown emergency service center. in Seattle. You also heard from Dr. Paul Borgazani, an associate professor in the Department of Psychiatry and Behavioral Sciences at the University of Washington School of Medicine. Thank you to

our providers for being here and sharing your perspectives. All right, let's get to Q&A, folks. So, you know, I wanted to bring back the question that we had in our first panel with the journalists, and I wanted to throw this to our providers and to our folks with lived experience. And that was the question from the police officer in the audience who asked, about how they could be a part of positive change. Carolyn, Dr. Borgizani, Tim, Laura, any comments on that? How, as a police officer, they're looking for ways to be part of change. I mean, I feel a lot of, like, there's the start of that collaboration

and kind of coordination with SPD and other agencies just to kind of get at, you know, the number of 911 calls that are going to, let's say, a certain PSH site, you know, getting the team together to really comb through, you know, like, what are the reasons for these calls, like the frequency, and then developing a joint plan. There's also the engagement with co-response teams, the mental health teams that are going out with SPD on crisis calls and opening the door of communication and collaboration, because, you know, we're seeing the same people. There's already that system and process kind of going. I think just to keep those doors of communication open and the willingness to remain partners.

This person writes and it says, what can I do to facilitate improvements in care for vulnerable communities as a psychiatric nurse practitioner? Besides just doing my job, I mean, you know, dollar donations, community engagement, volunteering, does anybody have a reflection on how can you, this is another question related, just asking about what can be done to support or improve, the mental health care in our communities as a person. Laura, do you have any feelings about that or ideas on that? Well, I would really start listening to people's stories. And I think one kind of slight irritant that I sense sometimes is that we're looking for a

quick fix. And there's a lot of impatience around in hearing that question in a way. I'm already doing all of this. What else can we do to make this real? And I think we need to really recognize that, I mean, I just turned 63 two days ago. Right. But my story started at 17. That's a long time.

And I had another episode about a year and a half ago. And I never thought that I would actually have another episode. And I've had three or four since the age of 17. And I always thought that's it. I've been there, done that. no more involuntary treatment and I'm on the road, but it turned out that things happened again.

And still, every day I wake up, I feel like I've got my recovery. I look up and I know there's some fighting stigma because I woke up and got out of bed when most people think that we're useless, basically. So I think people need

to recognize that this is a time oriented illness. This isn't a quick drive-through, unfortunately. And I do sense, sometimes especially among the politicians, that we need, you know, supportive housing, and we need the services. Well, the services aren't necessarily going to be enough. The housing certainly is going to be a key. So, you know, I would recommend to the RN or whomever raise that question to, you know, take it easy, kind of, you know, recognize that there are people's lives at stakes

here. And it's not just my story, but my mother has a story as well. She's still with And if she were here tonight, she couldn't make it. But she tends to really want to see that things are going to be settled and over and done with, and you'll be okay. But the fact is that's not the nature of this particular illness. Yeah. You guys, we had a ton of really wonderful questions tonight. We also had a really, I think, powerful conversation that pushed things forward in some ways, but also, you know, we're running up against time here.

And this is not going to be the book that we're writing here. This is just one chapter in the conversation that lost patients has started. So thank you everybody for being here and thank you to the team. Will James, host and reporter of the podcast, Lost Patience. Sydney Brownstone, investigative reporter at the Seattle Times and host and reporter of Lost Patients. Esme Jimenez, a reporter for Lost Patience and now a senior reporter at the Boston Globe. Thank you also to Laura Van Tosh, Carolyn Ponzoa, Tim Jolliffe, and Doher.

Dr. Paul Borgazani. Thanks, everybody. That was a recording of a live event held on May 9, 24, at the Seattle Public Library. We edited it for length and clarity. Lost Patience is a production of KUOW Public Radio and the Seattle Times in partnership with the NPR Network. Thank you to everyone who made this event possible, including host Libby Dankman, producers Sarah Leibovitz and Hans Twight, event manager Charlotte Duren, and editors Liz Jones and Diana Samuels. I'm Will James. Thanks for listening. Soundside brings you beyond the headlines with news and conversation rooted in the Pacific Northwest.

I'm Libby Dankman. Every week I sit down with local journalists for SoundSides front page, where we give you a shortcut to understanding the latest news and cultural moments and how they affect us here in the the Puget Sound region. It's all here on Sound Side, on the radio or streaming Monday through Thursday at noon and 8 p.m. on KUOW, on the KUOW app or wherever you get your podcasts.