Trascrizione completa di 72. Part 2: Inpatient Psychiatric Care Exposed: The Polarizing Views for Reform w/ Dr. Morgan Shields

reform efforts would require taking money from community based services towards hospital care. Speaker B 00:03:04 Community based services. Speaker B 00:03:06 What are they? Speaker B 00:03:08 I was a bit confused and maybe you are as well. Speaker B 00:03:10 What does Dr. Speaker B 00:03:11 Shields mean when she says this? Speaker B 00:03:13 Is community based services simply outpatient psychiatric care, or is it something more? Speaker B 00:03:20 And if There is something more. Speaker B 00:03:22 What else is there? Speaker B 00:03:23 Was she saying that in order to reform inpatient services, we'd have to take money from those outpatient services? Speaker A 00:03:31 Yes, I. Speaker A 00:03:32 Outpatient mental health care, but also social support, social welfare services. Speaker A 00:03:38 What a lot of people might need extends beyond just clinical care and includes, you know, housing and other types of social supports, transportation, et cetera. Speaker A 00:03:49 And some people do need, you know, maybe even temp temporarily, not necessarily long term, but sometimes long term they need more intensive services to live a meaningful life in the community, which might look like a team of people coming out to a person's home and having more regular contact with them rather than just, you know, once a month therapy session. Speaker A 00:04:10 And so that takes investment and takes resources. Speaker A 00:04:13 So that's some of the history. Speaker A 00:04:15 The, you know, maybe the disability rights advocates, maybe back in the 1980s, were the ones putting pressure on our systems to improve accountability and conditions of institutional care. Speaker A 00:04:26 They are sort of dedicated towards other efforts at the moment. Speaker A 00:04:29 They are justified in that. Speaker A 00:04:31 It just means, though, that there is a consequence of that sort of vacuum of advocacy. Speaker A 00:04:36 And on the other side of the spectrum, there is a push for expanded inpatient services. Speaker A 00:04:41 And that is kind of a more complicated, I would say, contingency of folks. Speaker A 00:04:46 It's pretty diverse. Speaker A 00:04:47 I would describe it as including family who are feeling like they don't know what to do. Speaker A 00:04:55 They have a family member who is in crisis or constantly in crisis. Speaker A 00:05:00 And the only way to get them any sort of crisis care is if they are really in an extreme state and they're at imminent risk of hurting themselves or others. Speaker A 00:05:10 Among family members, there can be almost like a resentment that develops towards the rights that currently exist to protect patients or, or individuals from unnecessary institutionalization. Speaker A 00:05:22 Because sometimes it's seen as really getting in the way of being able to intervene, which might require using involuntary methods. Speaker A 00:05:31 You have to sort of allow your family member to decompensate to a certain point before there's any sort of intervention to, to seemingly help them. Speaker A 00:05:40 Then you also have other stakeholders which I would include, you know, CEOs of the. Speaker A 00:05:46 These for profits inpatient psychiatric facilities as being part of that contingency. Speaker A 00:05:51 And medical professionals and providers who are working on the front lines and who might have a view that is a bit constrained towards crisis. Speaker A 00:06:01 And so maybe what they see is in the emergency department, there's a lot of ed boarding. Speaker A 00:06:05 We have a lot of people who are coming and we cannot place them, and that must mean that we don't have enough beds. Speaker A 00:06:11 It's logical to think that the solution is to expand this service and create more beds. Speaker A 00:06:17 The situation is a bit more complicated than that for a lot of people who end up boarding in the emergency department. Speaker A 00:06:24 The people who are more likely to board tend to be the folks who might be, quote unquote sicker. Speaker A 00:06:30 They maybe were brought to the hospital by the police. Speaker A 00:06:34 Maybe they're viewed as being a risk of being dangerous or violent. Speaker A 00:06:38 There's characteristics about their disposition that might make a receiving hospital not want to accept them. Speaker A 00:06:44 It's not the case that there are just no beds. Speaker A 00:06:46 It's a bit more complicated. Speaker A 00:06:48 Are there organizations who want to accept that patient, given their risks and who their payer is and how much they're going to pay? Speaker A 00:06:55 Because it is a market based service in the United States. Speaker A 00:06:58 And so, you know, maybe unlike other areas where it's a single payer system and sort of mostly everyone goes to like the same type of hospital and it really is just a matter of beds or capacity. Speaker A 00:07:09 It is a bit more complicated in the United States in that regard. Speaker A 00:07:13 Thinking that just expanding inpatient services is going to solve all of our problems is pretty short sighted, not very creative, and obviously neglects the utility of these services. Speaker A 00:07:25 We don't know what is happening to people inside these institutions. Speaker A 00:07:29 Right? Speaker A 00:07:29 There's a lack of accountability and a lack of curiosity or an expectation for actual therapeutic benefit. Speaker A 00:07:36 So almost like it's just assumed that containing them and putting them into a hospital is going to provide necessary benefit. Speaker A 00:07:42 But we actually don't have evidence for that. Speaker A 00:07:45 And we do have evidence that there's a lot of harms being caused. Speaker A 00:07:48 That's the tension here is, well, wait a minute, what actually do we want patient services to be doing for individuals and are they achieving that goal? Speaker B 00:07:58 What really stands out to me Here is how Dr. Speaker B

00:08:01 Shields mentions that there is a lack of accountability when it comes to putting patients into a hospital. Speaker B 00:08:07 They think that simply by admitting someone that patients will automatically benefit. Speaker B 00:08:13 And in part one, she also mentions that the psychiatric hospital setting is almost like a black box. Speaker B 00:08:20 She says that we don't really even know what's happening within the walls of the hospital until patients speak up about their experiences after the fact. Speaker B 00:08:31 Dr. Speaker B 00:08:31 Shields has even conducted surveys in her research asking patients about their experiences. Speaker B 00:08:38 You can find those studies in the show notes. Speaker B 00:08:40 And we just spoke about how one reform ideology is to increase the number of beds in psych hospitals. Speaker B 00:10:00 But on the other end of the spectrum, there are people who want to get rid of psych hospitals altogether. Speaker B 00:10:06 And my question is really, where does this ideology come from? Speaker B 00:10:11 Why do they use the term abolition? Speaker B 00:10:14 And do these people think that we just completely get rid of crisis support for these patients altogether? Speaker A 00:10:21 Well, what I can also say just to, to be a bit more sympathetic towards that side, because I actually align in spirit more with that side. Speaker A 00:10:30 Some of this might be a difference in language and what we mean when we say things like abolition. Speaker A 00:10:36 In practice, there's been a push to deinstitutionalize. Speaker A 00:10:40 When I think there is diversity among those of us who want to see more humane, patient centered care, who do believe in patients rights and lean in spirit more towards those principles. Speaker A 00:10:53 There's diversity among us in the extent to which we actually think it's possible to sustain a society without inpatient psychiatric care. Speaker A 00:11:01 Folks who do advocate for that, they are not necessarily imagining a world where we have no crisis services at all. Speaker A 00:11:08 It's just a bit different. Speaker A 00:11:10 So as opposed to the standard hospital setting where it's sterile and directed by psychiatry in the United States, to be the director of an inpatient psychiatric hospital, you have to be a medical doctor, you have to have an md, so you have to be a psychiatrist. Speaker A 00:11:27 In most states, it's in state regulations what those requirements are. Speaker A 00:11:31 And in most states that is the requirement. Speaker A 00:11:34 And so it forecloses other sorts of mental health providers being able to lead these institutions like clinical psychologists or social worker or whatnot. Speaker A 00:11:43 And so it's a certain type of professional who has a certain orientation towards certain treatments like medication. Speaker A 00:11:50 And they have a certain ethos and a culture around power and authority over patients. Speaker

A 00:11:56 The folks who want to see abolition want to see alternatives to that. Speaker A 00:12:01 They want to see crisis services that perhaps are run by peers, people who have lived experience of mental health conditions, mental health services and crises, leading these services in a more homelike setting as opposed to a hospital. Speaker A 00:12:17 The thinking being that that's more therapeutic. Speaker A 00:12:19 These are called peer respites. Speaker A 00:12:21 There is some evidence that peer respites can be beneficial to patients. Speaker A 00:12:25 There's been some randomized control trials, even sort of comparing peer respite to inpatient psychiatric care. Speaker A 00:12:32 I mean limited randomized control trials that have demonstrated superior benefits of peer respites. Speaker A 00:12:39 There's challenges in doing this type of research, right? Speaker A 00:12:42 And there's challenges ethically and randomizing people to, to different types of crisis care, especially if they're at risk of hurting themselves or someone else. Speaker A 00:12:51 There are limits in what we learn through standard research designs. Speaker A 00:12:56 But all evidence points to peer respites or other alternatives as being worthwhile interventions to consider investing in and potentially Expanding. Speaker A 00:13:08 But you know, if it's expanding those services and scaling them up, there's obviously going to be a lot of implementation questions and how do you best sort of scale that up and you know, who are those best for and who might do better in a traditional hospital setting? Speaker A 00:13:25 There are always exceptions. Speaker A 00:13:26 It's not that folks want to see just a closure of hospitals and then absolutely no services for folks. Speaker A 00:13:32 They want to see a reimagined alternative to the hospital. Speaker B 00:13:36 I did a little research on peer respites because this is a new term for me and it might be a new term for you. Speaker B 00:13:43 According to the National Empowerment Center, a peer respite is a voluntary short term overnight program that provides community based, non clinical crisis support to help people find new understanding and ways to move forward. Speaker B 00:14:00 We apparently have them all over the United States and many even offer free stays for those in crisis for up to seven days. Speaker B 00:14:09 They are staffed and operated by people with psychiatric histories or people who have experienced trauma and or extreme states. Speaker B 00:14:19 I'll link this website in the show notes if you're curious about learning more as well. Speaker B 00:14:23 When it comes to inpatient psychiatric care, there are also two buckets of hospital settings. Speaker B 00:14:29 I know this is all really complex and confusing. Speaker B 00:14:34 There's the for profit and the nonprofit hospital setting. Speaker B 00:14:38 What I wanted to know was what does it mean for care when it comes to these two different types of facilities? Speaker B 00:14:45 Do they run any differently? Speaker B 00:14:47 Do patients get treated better in one facility or the other? Speaker B 00:14:52 You would assume not, right? Speaker A 00:14:54 So some people will tell you there's probably not much difference between a for profit or nonprofit. Speaker A 00:14:59 In practice. Speaker A 00:15:00 A lot of big nonprofit medical centers operate just like a for profit in terms of being very profit oriented. Speaker A 00:15:07 It's just that they reinvest those profits within their organization. Speaker A 00:15:11 It goes to salaries or a new building. Speaker A 00:15:13 It just doesn't go to shareholders or it's not held as profit by leadership per se, but certainly it can go to their salary. Speaker A 00:15:21 That is generally the case when it comes to general hospital care. Speaker A 00:15:26 When it comes to psychiatric care, however, and other types of medical settings such as nursing homes. Speaker A 00:15:32 But say that the theory and the evidence maybe is a bit different. Speaker A 00:15:35 So let me back up and say theoretically. Speaker A 00:15:39 Theoretically, if we're looking at this through an economics theory lens, healthcare has what we call lots of market failures in the United States. Speaker A 00:15:48 It's a market based service. Speaker A 00:15:50 You have these private enterprises and it's not just the government that's providing services. Speaker A 00:15:55 It's a market based service. Speaker A 00:15:56 But there are market failures, meaning that patients, first of all are not the ones who are usually paying for care. Speaker A 00:16:02 There's the insurance company as an intermediary. Speaker A 00:16:04 So that makes things complicated. Speaker A 00:16:06 Patients don't always have full information about care quality and they're not able to make decisions on where to go for care. Speaker A 00:16:13 It just means that the market doesn't provide natural consequences to providers for providing care that's poor quality. Speaker A 00:16:20 So there's not always a natural incentive for providers to make sure they're providing care that is high quality and meets patients preferences that is exaggerated when it comes to inpatient psychiatric care. Speaker A 00:16:33 Right, because there's even more constraints on shopping. Speaker A 00:16:36 There's the use of involuntary admissions, patients perceptions are totally discounted, et cetera. Speaker A 00:16:41 So it's even more severe when it comes to inpatient psychiatric care in conditions where you have these market failures. Speaker A 00:16:48 Theoretically, we expect that for profits will intentionally exploit those market failures to maximize profits. Speaker B 00:16:56 Okay, I want to say the sentence again. Speaker B 00:16:59 For profit hospital settings intentionally exploiting those market failures to maximize profits. Speaker B 00:17:07 That's a powerful

statement. Speaker B 00:17:09 And to understand it a bit more, let's actually rewind. Speaker B 00:17:13 Let's think about what actually constitutes a market failure in this context. Speaker A 00:17:19 What's called information asymmetry. Speaker A 00:17:21 So providers knowing more about the care quality that they're providing than patients, especially before they experience care. Speaker A 00:17:28 So that's a market failure because it means that the consumer is not able to take all of the information about the product and make an informed decision on whether or not they want to buy that product. Speaker A 00:17:41 And it means that providers have more power in that sense, that they have insight into the product they're providing, but that the consumers don't necessarily have that insight, especially before they end up as patients. Speaker A 00:17:54 And, and, and they may experience care, then they do have more insights, but their ability to use that information to change the behavior of their future selves or others is constrained because they don't have as much agency as you do. Speaker A 00:18:09 If you're, you're shopping for shoes where you can read reviews, see how people like you appreciated the shoe, or if the shoe gave them back pain, you can do all of your due diligence and then you make the decision if you want to buy that shoe or a different shoe. Speaker A 00:18:24 It's not the case with inpatient psych. Speaker A 00:18:26 You end up at an emergency department. Speaker A 00:18:28 You then are sent to a hospital that has a bed that is willing to receive you. Speaker A 00:18:33 You don't even know the name of the hospital. Speaker A 00:18:35 Sometimes it's not necessarily like they even ask you, is this the hospital you want to go to? Speaker A 00:18:41 It's we found you a bed, so now we're going to transport you to this place. Speaker A 00:18:46 We theoretically expect for profits to exploit those market failures, which is just to say to not be that motivated to care about care quality in the same way that they would if they had to really compete for business. Speaker A 00:19:04 They're not really competing on quality, you know, because there's not consequences. Speaker A 00:19:08 And so this might look like for profits not investing in staffing in the same way that they would if there were more clear financial consequences, because it's rational. Speaker A 00:19:22 If there's not any financial incentive for them to invest in their staffing, then why would they. Speaker A 00:19:27 It becomes a tougher business proposition to truly invest in the patient experience of a hospital if it's not clear how that's going to financially benefit them. Speaker A 00:19:38 And if they think that they're able to make a lot of profits by keeping all of their beds filled at maximum capacity, even if it means having two to four patients in a given room where there could be conflict between patients, risk of violence, that might generate a lot of revenue, there is risk of lawsuits and there is risk of staff turnover. Speaker A 00:19:58 So, but that's a calculation. Speaker A 00:20:00 But the calculations might end up being in favor of, let's just sort of keep these beds filled, let's see how low we can get away with having thin staffing. Speaker A 00:20:10 Let's use a lot of medications, right? Speaker A 00:20:12 Let's keep patients mostly sedated then also we don't have to worry too much about conflict and staffing. Speaker A 00:20:18 If everyone is sedated, you can see how that can lead to over medication and death and how that is in conflict with therapeutic evidence based models for violence prevention which are based in relationships and require the hard work of building trust with patients and being mindful of power imbalances. Speaker A 00:20:38 It's potentially a lot easier and cheaper to just make sure everyone's on a sedative. Speaker A 00:20:43 Theoretically, we should all be concerned that there's been a rise in for profit in private equity ownership of psychiatric hospitals. Speaker A 00:20:51 That that actually should just be our baseline. Speaker A 00:20:53 Our baseline should not be, I'm sure everything's okay, and, and until we're proven otherwise, we're just going to be very happy that now we, you know, we have more beds in our community. Speaker A 00:21:04 I think the assumption should be this is a setting with a lot of market failures. Speaker A 00:21:08 Another word is extreme vulnerability of individuals. Speaker A 00:21:13 And why is there so much for profit and private equity investment? Speaker A 00:21:18 How are they making their profits? Speaker A 00:21:20 Are they sacrificing care quality? Speaker A 00:21:23 The argument for it is that they're able to be more efficient. Speaker A 00:21:25 There's economies of scale. Speaker A 00:21:27 Maybe they're able to negotiate for higher reimbursement from providers because they are a more powerful organization. Speaker A 00:21:33 If they own most of the hospitals in a network, then perhaps they are able to negotiate for higher reimbursement. Speaker A 00:21:39 So I just want to sort of validate that. Speaker A 00:21:41 That could be a mechanism empirically. Speaker A 00:21:43 As a researcher, it is very hard to study a variation in care quality across psychiatric hospitals empirically. Speaker A 00:21:51 I'm a bit constrained in what I can say is the actual difference between the nonprofits and the for profits. Speaker A 00:21:57 I can say that nationally I've done some analyses looking at staffing. Speaker A 00:22:02 The for profits have lower staffing ratios than the nonprofits. Speaker A 00:22:07 That aligns with what we would expect. Speaker A 00:22:10 They also have lower staffing than the government owned hospitals. Speaker A 00:22:13 The same is true with private equity owned hospitals. Speaker A 00:22:16 They have lower staffing. Speaker A 00:22:17 I did some

research looking at complaints, regulatory complaints and use of restraint and seclusion in the state of Massachusetts. Speaker A 00:22:25 The for profits in that state also had higher rates of complaints and higher rates of use of restraint and seclusion, which also makes sense. Speaker A 00:22:33 But you can imagine, you know, a hypothesis being that maybe the for profits are actually targeting folks who have private insurance and who are maybe less complex. Speaker A 00:22:44 And there's evidence that at least the big corporate chains are making most of their profits from Medicaid. Speaker A 00:22:53 These are people who are poor. Speaker A 00:22:54 They are not making most of their profits from private insurance. Speaker A 00:22:58 If we're talking about residential substance use treatment facilities, the opposite is true. Speaker A 00:23:02 Residential substance use treatments seem to be targeting out of pocket pay and private pay. Speaker A 00:23:08 But with inpatient psych, they seem to be targeting Medicaid and poorer populations. Speaker A 00:23:13 If you are working with a disenfranchised population who may already have low expectations for care quality, you might be able to get away with providing poor quality care to a greater extent and with less scrutiny and less pushback than if you were providing care to folks who are more well off in their families. Speaker B 00:23:32 The takeaway that I hear from these differences in care quality between the nonprofit and the for profit hospital setting is that we can't simply assume that care facilities are doing the best for patients out there. Speaker B 00:23:47 But it's important to have advocates in our lives, whether it be our friends or family members. Speaker B 00:23:52 And it's important to have a support system that will ask the questions to get you to the best care possible instead of just blindly following the system. Speaker B 00:24:02 I do want to take a moment though, because if you're listening to this, it all might sound quite daunting. Speaker B 00:24:09 And I want you to know that I'm also learning right beside you. Speaker B 00:24:13 After I posted part one, someone bravely commented this on YouTube. Speaker B 00:24:18 Thank you so much for speaking out. Speaker B 00:24:20 Being an inpatient back in 2008 was the most traumatizing and harrowing experience of my life, changed my perspective of the healthcare system and only led me down a rabbit hole. Speaker B 00:24:32 For a long time, I was anti vax. Speaker B 00:24:34 And while I no longer hold those beliefs, I still stand by the fact that the psych ward broke me down and led to a fear of doctors that persists to this day. Speaker B 00:24:45 This is just one person's experience, but it's a powerful one, and it's one where it can completely change the way you view healthcare and the people operating within it. Speaker B 00:24:57 We want to trust our physicians, we want to trust the nurses, we want to trust

the system. Speaker B 00:25:02 But when you experience something like this, it's kind of difficult. Speaker B 00:25:06 What do we do first? Speaker B 00:25:07 And how can we serve this vulnerable patient population? Speaker B 00:25:11 I wanted to know simply what Dr. Speaker B 00:25:14 Shields is researching to learn more about this unique patient experience and what opportunities there are to improve care qualities. Speaker B 00:25:23 This is what she's currently working on. Speaker A 00:25:25 I'm finishing up publishing papers from an online survey that we did a couple of years ago, where data is lacking and it's almost impossible to go around and systematically recruit psychiatric patients in order to get at prevalence of experiences. Speaker A 00:25:44 We did an online survey, so we just recruited a convenience sample. Speaker A 00:25:48 We had about 800 responses. Speaker A 00:25:51 These are all people who had been hospitalized in an inpatient facility within the previous few years. Speaker A 00:25:57 And we gave them a measure of patient centered care. Speaker A 00:26:00 So this measure includes questions like, did you feel that you were involved in your care? Speaker A 00:26:08 Were you able to ask questions easily? Speaker A 00:26:11 Did you feel that you were respected and treated with dignity? Speaker A 00:26:15 We also measured what is called institutional betrayal, which is inversely associated with patient centered care. Speaker A 00:26:23 But institutional betrayal is a concept developed by Professor Freed, who is at a university in Oregon, and she's a clinical psychologist. Speaker A 00:26:31 And it's basically this concept that when a. Speaker A 00:26:35 When an individual is dependent upon an institution to protect them, and that institution fails to protect them or even causes harm to them, that the psychological impact can be profound, especially if there's no sort of attempts by the institution to apologize or to make amends with the individual. Speaker A 00:26:57 And so inpatient psychiatry is a setting where patients are very vulnerable and they are very dependent on the institution to protect them. Speaker A 00:27:05 So this concept, this institutional betrayal concept, seems to fit really nicely with the setting of inpatient psychiatry. Speaker A 00:27:12 We had a measure of institutional Betrayal. Speaker A 00:27:14 We also looked at COVID 19 mitigation strategies. Speaker A 00:27:18 That's its own paper that's been published. Speaker A 00:27:20 We were really interested in understanding the relationship between patient centered care, institutional betrayal and whether the patient reported that their hospitalization reduced or increased their trust in mental health care providers, reduced their willingness to engage in post discharge care, whether or not they had a 30 day follow up visit, post discharge, et cetera. Speaker A 00:27:44 We also looked at variation across ownership. Speaker A 00:27:47 We linked these data to secondary data on facility characteristics to see is it the case that patient centered care, if that's really the nucleus of care quality, is it the case that folks who had been hospitalized at a for profit had lower patient centered care and higher betrayal than folks hospitalized at a nonprofit? Speaker A 00:28:10 And basically what we find is very, it's intuitive, it's an alliance with theory. Speaker A 00:28:15 There's a strong relationship between their experience of patient centered care or institutional betrayal and all of those outcomes I mentioned. Speaker A 00:28:24 So trust and willingness to engage, 30 day follow up and patient centered care was lower at for profits and institutional betrayal was higher at for profits compared to nonprofits. Speaker A 00:28:37 So that provides some evidence beyond, you know, our existing measures of care quality are so limited. Speaker A 00:28:44 And so this was the first time we were able to demonstrate that there is a relationship between experiences of patient centered care and these outcomes and that these experiences differ between for profits and nonprofits. Speaker A 00:28:57 There is now empirical evidence for that. Speaker A 00:29:00 And then in the same survey we did ask people in a free response box, what are your suggestions for care improvement? Speaker A 00:29:06 A really simple question. Speaker A 00:29:08 And we had over 500 responses. Speaker A 00:29:10 So it's a lot of qualitative data to analyze. Speaker A 00:29:13 Most people did not actually write suggestions. Speaker A 00:29:17 If they did, it was anything, that's the opposite of what I experienced. Speaker A 00:29:22 And then they, they took it as an opportunity to share their story. Speaker A 00:29:25 Something that I have found in my research is that folks who have lived experience really want to be heard, they really want to share their experience. Speaker A 00:29:34 And they feel like there isn't an outlet to share their experience and to be believed and to be taken seriously. Speaker A 00:29:40 So I find them to be very engaged in our research projects. Speaker A 00:29:44 And with this particular question, we did have essays from participants where they were just describing that, you know, their experience in these narratives. Speaker A 00:29:54 And so we wrote a paper and published that this year. Speaker A 00:29:57 It's in the Journal of Patient Experience where we describe that text. Speaker A 00:30:02 And it was a tricky thing to try to frame since we were asking for suggestions for improvement. Speaker A 00:30:07 We kind of framed it as opportunities for quality improvement through the perspective of former patients. Speaker A 00:30:14 But it is, you know, what we might expect really investing and improving relationships within these facilities, respecting patients rights and autonomy, improving continuity of care and efficiency of systems, information sharing.

Speaker A 00:30:29 So actually answering patients questions and telling them what medications they are being given and a step beyond that is actually engaging in shared decision making with patients regarding medications. Speaker A 00:30:41 But a lot of folks I speak to and who we sort of interview in our research say, I have no idea what meds I was given and nobody told me what meds I was given. Speaker A 00:30:51 And so that's, that's at. Speaker A 00:30:52 That's a very low level. Speaker A 00:30:53 Like, so to actually get to shared decision making is. Speaker A 00:30:57 Is many steps above that is we have people who said, I just wish I knew. Speaker A 00:31:02 No one would answer my questions. Speaker A 00:31:04 This feeling of being treated like you're less than human, that you're a piece of trash. Speaker B 00:31:09 Can you imagine being treated like this or feeling like you're less than as a patient within the inpatient psychiatric setting? Speaker B 00:31:16 No one wants to feel this way. Speaker B 00:31:18 I wanted to know, is there a way that after gathering all of this research to provide recommendations to improve care quality? Speaker B 00:31:27 And if there is, who do you provide these recommendations to? Speaker B 00:31:31 Is there a dance you have to do to make sure you don't quote, unquote, upset someone who works in these types of facilities? Speaker B 00:31:39 How do you make someone listen or even simply have a conversation around it? Speaker A 00:31:44 I have not thought about sending out recommendations to individual inpatient providers. Speaker A 00:31:49 I have found that even having a conversation with inpatient clinical leadership, who are often psychiatrists, can be really tricky because they're on the front lines. Speaker A 00:32:04 I'm sort of an outsider. Speaker A 00:32:06 I don't really want to come across as though I'm telling them how to do their job. Speaker A 00:32:09 That triggers pretty extreme defensiveness. Speaker A 00:32:12 And they basically see people at their most extreme state. Speaker A 00:32:18 They don't always see the continuum of services or a person's life and what is possible. Speaker A 00:32:24 Unfortunately for folks working within these types of facilities for a long time, they have almost become institutionalized in their thinking. Speaker A 00:32:33 I find when I try to gently report back to people in leadership positions, there's extreme defensiveness. Speaker A 00:32:41 And I'm not someone who goes into these conversations and says, I think we should burn down all of the hospitals. Speaker A 00:32:49 I try really hard to be diplomatic and to validate that they have their own expertise that I don't have and that this can be a really hard job when people are in crisis. Speaker A 00:32:59 Now, working with people in crisis can be really hard and not always fun. Speaker A 00:33:03 And burnout is real. Speaker A 00:33:05 But for me, a group that I want to prioritize providing Feedback reports to are folks with lived experience. Speaker A 00:33:13 So my actual participants in my studies, following up with them and saying, here's what we found, let me know if you disagree with our conclusions. Speaker A 00:33:23 And reporting back to that community in different outlets. Speaker A 00:33:26 So the news sources that maybe folks in that community might be reading, sharing on social media and trying to have conversations with policymakers, they're sort of another audience and payers. Speaker B 00:33:38 It's not surprising to me that inpatient clinical leadership in these facilities would be defensive if they were to hear recommendations coming from an outsider OR researcher like Dr. Speaker B 00:33:48 Shields. Speaker B 00:33:49 She isn't working day and night within these settings, even though she was a patient at one point in her life. Speaker B 00:33:56 The remarkable thing that she's doing though is sharing her findings with participants and patients that she's interviewed. Speaker B 00:34:03 To me, this supports and validates these individuals to know that they simply weren't alone. Speaker B 00:34:09 And maybe these facts could even trigger greater grassroots organizations that can fight for change in the future. Speaker A 00:34:17 We do have in this country what is called P and A organizations. Speaker A 00:34:21 PNA stands for PAIMI and basically they protect patients rights. Speaker A 00:34:28 And PAIMI was created, I believe in around 1986 or so, maybe it was 1988, to protect people who were in institutional settings, people with serious mental illness, quote, unquote. Speaker A 00:34:40 And they are mandated to exist in every state and they have special authority to enter inpatient psychiatric hospitals and to obtain patient records and to observe what's going on. Speaker A 00:34:51 They oftentimes are legal firm firms. Speaker A 00:34:54 So like they are advocate through law. Speaker A 00:34:57 And I think that they are a very powerful mechanism that could be leveraged. Speaker A 00:35:02 They are on the ground, they because they have access to psychiatric hospitals and they hear from patients who've had their rights violated. Speaker A 00:35:10 And so I think that they are a potential powerful mechanism that we could leverage, we could think about funding them better. Speaker A 00:35:18 But that they have been the target by folks on the other side of the advocacy spectrum have targeted them and have tried to advocate for defunding them because the argument is they care about patients rights. Speaker A 00:35:31 We need to defund them because they're getting in the way of being able to intervene and use involuntary methods. Speaker A 00:35:38 So the polarized advocacy landscape actually has very real world implications that can be very messy, very unfortunate. Speaker A 00:35:46 But I did want to just give a shout out to the PNAS because I think that they're doing really

hard work and they, they technically are doing conditions work. Speaker A 00:35:54 Right. Speaker A 00:35:55 And so they, they are an exception. Speaker B 00:35:57 We're coming to the end of these conversations with Dr. Speaker B 00:35:59 Shields and she has given us a lot to think about for example, how people have very different views in terms of reforming inpatient care, from adding new beds to the view of deinstitutionalizing the system and seeking out other types of services. Speaker B 00:36:17 Instead we learned about peer respites and even how care quality could be quite different if you were admitted to a for profit versus non profit psychiatric setting. Speaker B 00:36:29 But most of all, I think these conversations further solidify the notion that these issues are so complexly nuanced in a way that necessitates that something should and must be done. Speaker B 00:36:43 The work that Dr. Speaker B 00:36:44 Shields is doing is without a doubt crucial, but we do need the backing of more grassroots organizations and people who want to speak out to continue to do the work. Speaker B 00:36:55 The last thing I wanted to ask Dr. Speaker B 00:36:57 Shields was really, what does she hope that people who have gone through an inpatient psych experience or even had family members who have personal experiences take away from these conversations? Speaker A 00:37:09 I would love for them to take away that if they have had negative experiences that they're not alone and that there are many people who believe them and who have also had very negative experiences and that that is not right and they did not deserve that at all. Speaker A 00:37:29 And that I hope they're able to meet other people who also have lived experience who can help validate that for and potentially even mental health professionals. Speaker A 00:37:40 I know of many mental health professionals, they tend to be social workers or clinical psychologists. Speaker A 00:37:46 But I also know psychiatrists who get this and who know and I know that sometimes you need that validation from a professional. Speaker A 00:37:54 And so my wish is for folks listening that they have that opportunity if they want it. Speaker A 00:38:01 But they're also valid in not wanting to engage in our healthcare system at all. Speaker A 00:38:06 I do, I just want to point that out. Speaker A 00:38:08 That is a valid reaction to a very unjust experience that one might have. Speaker A 00:38:14 And if you've had really fabulous experiences while inpatient, that is also valid. Speaker A 00:38:20 And for folks who have had extreme states psych like psychosis or mania, what's tricky here is this recognition that sometimes medication is needed and sometimes you do need some sort of intervention that potentially a little bit more forceful depending on where you're at with, with your, your thinking and your reality. Speaker A 00:38:43 And, and so I don't want anyone who's feeling like, well, but I really needed someone to intervene and I wasn't in my right mind to, to think that I'm invalidating that, that that is a reality. Speaker A 00:38:53 But just to say I think we can go about this in ways that are more humane and more humane for more people rather than there just being, you know, the exceptions like, oh, I once had a good experience or I know someone who had a good experience, it should be more of the norm and the exceptions really should be the negative experiences. Speaker A 00:39:13 But it seems that it is the inverse right now and that that's, you know, really not okay. Speaker B 00:39:18 I want to thank Dr. Speaker B 00:39:19 Shields for spending this valuable time to speak with us about her work, her passions, and her experiences. Speaker B 00:39:26 If you resonate with anything that was said in this episode or last week's episode, please please comment below. Speaker B 00:39:32 If you're watching or listening on YouTube or Spotify. Speaker B 00:39:36 If you're listening anywhere else, please feel free to email me@hatallobalhealthpursuit.com any questions, comments or even concerns are totally welcome. Speaker B 00:39:47 I'll link all the resources mentioned in the show. Speaker B 00:39:50 Notes this episode was researched, hosted, produced, edited all of the above by me. Speaker B 00:39:57 And I do want to give a big shout out to my coach, Anna Xavier of the Podcast Space for continuing to push me to create a show that is meaningful, educational and entertaining all at the same time. Speaker B 00:40:10 If you'd like to support the production of the podcast, there are a few ways to do it. Speaker B 00:40:15 As an independent podcaster, I would love to give you a shout out on the show. Speaker B 00:40:19 All you have to do is become a patron by donating as little as $3 a month. Speaker B 00:40:25 A big thank you to Ali, Mitra G and Ajay for donating to the podcast. Speaker B 00:40:31 If you'd like to be part of this list, you can donate by clicking the support link in the description below. Speaker B 00:40:37 Please follow this podcast wherever you're listening. Speaker B 00:40:39 Write me a review on Apple Podcast and rate me on Spotify and I'll see you next week.