"They Die with their Rights On” - Our Broken System of Emergency Psychiatry (Ep. 7)

Interview with Lynn Nanos, L.I.C.S.W. 

If you’ve ever wondered why our loved ones aren’t getting the help they need, Lynn writes about her side of the process in the book Breakdown: A Clinician's Experience in a Broken System of Emergency Psychiatry. 

Stories about her patients open our hearts, and she shares clear and valuable solutions to  help fix the problems. 

"They died with their rights on” - what’s wrong with that?

How do inpatient units discriminate against those who are most sick?

How can discrimination be curtailed or eliminated?

How common is it for you to evaluate people who are clearly sick enough to be in the hospital, but there aren’t enough markers to warrant hospitalization?

The law only cares about what is “imminent.” Why? 

Psychiatric involuntary transfer and hold laws

The revolving door of cycling in and out of hospitals and jails.

AOT - Assisted Outpatient Treatment

Peer specialists - do they go too far?

The antipsychiatry movement - harmful or helpful?

IMD exclusion

HIPAA

Transcript

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SPEAKER_01 0:01

Welcome to our podcast, Schizophrenia. Three moms in the trenches. From the place where schizophrenia and real life collide. East Coast, West Coast, Middle America. With Miriam Feltman, Mindy Gryling, and Randy Kay. Last episode we talked about conservatorship and how that affects our relationships with our sons and how to go about getting it. And today, we three moms are going to talk with this amazing clinician, Lynn Nanos. Now, if you've ever wondered why your loved one with schizophrenia maybe isn't getting the help they need, Lynn writes about her side of the process in the book Breakdown, a clinician's experience in a broken system of emergency psychiatry. One of the reviews comes from Pete Early, who's the author of Crazy, a Father Search Through America's Mental Health Madness. And Pete says that Lynn's dedication to helping throwaway patients trapped on a treadmill of hospitalizations, homelessness, and jails is heroic and inspiring. And there's a lot of other amazing reviews. And as for me, I just kept wishing she had been my son's clinician. Lynn peppers her book with stories of the clients that she obviously cares so much about. She's based in Massachusetts, and her book was published in 2018 and still being sold, making waves, making a difference. Lynn, welcome. Thank you so much for having me. I'm so happy to be here. It's a

3 Moms and sons in Brief

SPEAKER_01 1:33

pleasure. Now, before we begin, you don't really know us. So we three moms are just going to give you a brief introduction to who we are. I'm Randy. I have a son whose pseudonym is Ben. That's what I call him in the book. He is 38. He has paranoid schizophrenia, what I've been told is a really bad case of it. He's been hospitalized nine times and has gotten as successful as being full-time employed, but has kind of uh slid back down the chute to living in a residence home after a recent hospitalization and all that's cause of COVID. And my book is called Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope. Mimi?

SPEAKER_02 2:14

Hi there. My name's Mimi Miriam Feldman. I'm a painter and uh I guess a writer now. I wrote a book called He Came In With It, which is my particular story of our family and my son Nick, who is now 35 and has schizophrenia. And um that's who I am. And welcome. Really interested to hear what you have to say.

SPEAKER_03 2:42

Thank you. I'm uh Mindy, Mindy Gryling, and our son Jim has schizoaffective disorder. He's been sick for about 20 years, and his chemical, his substance abuse issues actually are a bigger problem for us now and for him than his mental illness because he's pretty stable with that. He's been committed seven times, and I can't begin to count the hospitalizations. So I'm really I was so thrilled to read your book and see that I'm not sure it was comforting or not, but it was affirming that you're just as frustrated as we family members when you're trying to help.

SPEAKER_00 3:25

Indeed.

SPEAKER_01 3:26

Yep, so that's us. And the phrase I kept highlighting, which I don't think you made it up, but it resonates throughout the book, is patients that you have treated. And by the way, you're um a licensed social

They died with their rights on

SPEAKER_01 3:40

worker, but you do a lot of the intake, and you obviously care so much about the people that you meet, and you keep telling stories about people who, quote, died with their rights on. And this strikes at the heart of everything we as moms have dealt with with our sons. And you talk about what needs to be changed in the mental health system, and boy, do we agree. So let me start with this. What inspired you to write this book? And and what was the target audience you had in mind when you wrote it?

SPEAKER_00 4:12

Well, I'm in my 13th year as a mobile emergency psychiatric social worker. And although most mobile cases have involved mentally high-functioning patients, I've been most invigorated from helping the most impaired patients, usually suffering from psychosis. I've noticed that they are grossly underserved in both the mental health and legal systems. And I dedicate breakdown to this population. Also, I had done a lot of mental health advocacy work on a national scale for years before beginning to work on breakdown. And I was very inspired by advocates' tragic stories. Their stories motivated me to become a better social worker and to begin writing breakdown. Also, certain clinical cases and high-profile tragedies were at the forefront of my memory because they were especially dramatic and shocking. And another reason is I increasingly realized that there's no opportunity to influence legislators to change the system in the clinical setting. So, my biggest goal in writing breakdown was to appeal for legislative reform because it's nearly impossible to change the system from within the trenches of clinical work. Very few people are aware of the population I help and what they struggle with. And to best serve the population, legislators should really know about the injustices that I've seen every day. The target audience that I had in mind is anyone who has a family member with severe mental illness or is a professional who helps people with serious mental illness would be interested in reading breakdown. My greatest hope when writing breakdown was that readers would give copies to their legislators. And I am so grateful that some of them actually did this.

SPEAKER_03 6:23

Thank you, Lynn. And I don't know if you know, but I am a former legislator. I was in the Minnesota House of Representatives for 20 years. And I would actually encourage you, if you have time, I know you're really busy from reading your book. I don't know when you would squeeze it in, but I would encourage you to visit your legislators as well. Families are listened to, especially if they're constituents, and so are professionals. Um, so uh I I urge you to also join the families in talking to two legislators. One question that I have is how when you wrote this book, did you decide to structure it so it would have the most impact?

SPEAKER_00 7:06

So it traces key events in the history of the system. It starts with factors that contributed to the mass closings of hospitals, then goes into the dramatic decline in inpatient lengths of stay, and then talks about the narrowing of civil commitment criteria. And the core of the book, uh, besides the many citations that are included, are the detailed case vignettes. The detailed case vignette demonstrate interactions between patients, their families, police officers, other mental health providers, as they navigate a path toward reducing and preventing danger. And I demonstrate how the system limits their ability to help as too many patients end up homeless, jailed, harming themselves, harming others, or even dead.

SPEAKER_03 8:13

One thing I was interested in your book, I'm not sure it's the same in every state. You're in Massachusetts, but uh for our listeners, could you describe exactly what your role is in the work that you do in the mental health system?

SPEAKER_00 8:30

Sure. As an LICSW, which is licensed independent clinical social worker, I have the ability to authorize involuntary transfers of clients to hospitals. And my most important role is to prevent or decrease danger. For instance, if someone is refusing to eat for days, losing weight because she believes that neighbors are poisoning her food, but doesn't believe she's ill and thus is not getting treatment, she needs to be treated on an inpatient unit. So a major role of mine is to determine whether patients qualify for inpatient. And when they do, I assure that they are transported to safety. And if they don't qualify for inpatient, I can give them self-help materials such as a listing of support groups, or I can refer them to outpatient treatment programs.

SPEAKER_03 9:32

And you mentioned that you're mobile. How does that work?

SPEAKER_00 9:36

Well, when patients with serious mental illness are not in jail or hospitalized, crisis can occur anywhere, anytime, in the middle of the night. The program I work for never closes. So there are social workers in the middle of the night working. Breakdown shows where clients can be evaluated to determine if they meet inpatient criteria. For instance, I see clients at homeless shelters, group residential programs, personal homes, police stations, holding cells of police stations, my office, doctor's offices. And I recall a case in which I interviewed the patient on a street sidewalk. Wow. And I also evaluate patients at hospital emergency rooms and inpatient medical units. So I've very thoroughly detailed the many, many places in which uh evaluations can take place.

SPEAKER_03 10:41

It's rather mind-boggling to see all the places in the book. So,

Lynn's Work as LICSW

SPEAKER_03 10:46

how did you get into this work in the first place? What drew you in?

SPEAKER_00 10:51

Well, I've always felt most comfortable working with the sickest of the sick, and have a lot of sympathy and empathy for their plight because I've increasingly noticed that they are the most neglected by treatment providers and the government. For instance, it's a lot easier for someone pretending that he is suicidal to get into an inpatient unit than for someone who is prone to violence because of psychosis. Breakdown discusses discrimination a lot. A lot of inpatient units, if not all, discriminate against the most challenging cases. And this motivates me to advocate for them. The fact that those who need the most help seem to be the most neglected is tragically ironic. And this motivates me to help them.

SPEAKER_03 11:43

Thank you. I've seen research that even when someone does get into the psych ward, they get less attention than the more functional patients, and that's happened to our son. I've seen that. So I really appreciate your focus.

SPEAKER_02 11:59

Yes. That's an issue that I talk about a lot. And I'm constantly saying, in terms of the monies in that are being spent in mental health, that they're they're in inverse proportion to the most money is going to the least sick people and the least money is going to the most sick people. And what you're saying certainly backs that up.

How do inpatient units discriminate against those who are most sick

SPEAKER_02 12:26

I'm wondering, in your experience, how how you've seen inpatient units, inpatient units discriminate against those who are most sick, anecdotally. Like what are some of the things that you've seen?

SPEAKER_00 12:39

So inpatient units discriminate by declining to admit patients who are the most violent, not wanting treatment, lacking health insurance, those who will likely present overly challenging barriers to discharge from inpatient, rendering longer lengths of stay. And the hospitals might prefer that patients who require restraints be discharged sooner than patients without restraints because the use of restraints burdens hospital resources. In other words, hospitals might discriminate against patients who are likely to require restraints. The burden is this: if a doctor orders restraints, the physical strength and mobility of additional staff members are required to enforce the order. Workers are expected to observe the restrained patient closely and continuously. There's the emotional burden of staff, verbal escalation techniques didn't work. They might have offered choices, set limits, provided empathy to no avail. After restraints have been removed, they process the incident by talking with the patient and amongst themselves. There are additional documentation requirements for staff. All these tasks take staff away from attending to other patients. And breakdown shows a study in which restrained patients spend more time hospitalized than non-restrained patients. And certain inpatient units claim having extremely low restraint rates, but it's likely they're not accepting the most challenging cases.

SPEAKER_02 14:27

You know, this just makes me so incensed. And I think, and I'm always doing these analogies, but I just wonder, people out there, imagine, imagine if you brought your loved one to the hospital who was in agony with stage four cancer. And you were told, oh God, this is just going to be so much work. I mean, we got to lift him out of the bed. He can't get out by himself, he can't go to the bathroom. Look, just get him out of here. We want to deal with these people with the hangnails and the skin knees. They're so much more fun and interesting to deal with. I mean, imagine the societal outrage we would hear. And this is what goes on every day with serious mental illness. It's it's beyond belief. I guess I'm preaching to the converted here, but I I'm wondering, Lynn, how do you think discrimination could be eliminated or even curtailed in some ways?

SPEAKER_00 15:30

Well, what you mentioned is very disturbing to me as well. And as a result of the combination of limited inpatient beds and this discrimination, patients can languish for weeks in hospital emergency rooms before placements become available. Breakdown recommends that inpatient units that discriminate be held accountable and face consequences. Emergency programs doing bed searches could report to the government, and units could be closed if discrimination is not resolved.

SPEAKER_01 16:12

Wow. This is one of the things I love about your book that you tell the stories, you lay out the issues, but you present solutions. I want to talk a little bit also about that moment of hospitalization.

there aren’t enough markers to warrant hospitalization

SPEAKER_01 16:25

How common is it for you? Because you're right there with the intake, to evaluate people who are really sick enough to be hospitalized, but there just aren't enough markers to say, yeah, put them in the hospital. How common is that?

SPEAKER_00 16:41

It's extremely common. It happens very regularly. Anyone who is completely psychotic obviously needs professional help, but someone can have a high level of psychosis with the ability to eat, sleep, clean herself, protect herself from basic harm, pay rent, along with not posing a risk of serious harm to anyone. This is the gray area where they need help, but it legally cannot be forced. The law doesn't care that psychosis will worsen and interfere with the ability to attend to basic needs in the eventual future, nor does the law care that someone might get killed due to delusion in the eventual future. The

The law only cares about what is imminent

SPEAKER_00 17:37

law only cares about what is imminent. In other words, what is immediate. If a patient has lost weight in the last couple of weeks because of the belief that aliens are poisoning his food and he plans on continuing to starve himself, I can authorize an involuntary hold because the risk of danger is imminent.

SPEAKER_03 17:58

So that's the beauty, I think, of this podcast is we come from different states, and um, we've actually passed a law in Minnesota this past year that cuts into that having to wait till they're so dangerous to themselves or others that people like yourself can intervene earlier than that, up to 90 days before they meet commitment stand statute standards. So maybe some other time we can separately talk about that, you and I, Lynn, because that would be a lot to advocate for in Massachusetts, or I think all states.

SPEAKER_01 18:34

It's just the removal of that word imminent or yeah.

SPEAKER_03 18:37

Well, only three states still have the word imminent in their civil commitment statute. So it's just very three are the only ones that are that archaic, but but we still have imminent, and that could mean still to some people two weeks out, like Lynn was talking about. So this early is called engagement for treatment and services, and it's voluntary on the part of the patient, but the families can call the county, and there has to be aggressive and assertive attempts to help the person early. And no longer can the families be told there's nothing we can do because of the law. But in Massachusetts, you're still, it sounds like, stuck with this sort of system where you can't intervene earlier. What are the psychiatric involuntary transfer and hold laws?

SPEAKER_00 19:28

Well, it's certainly overly restrictive in Massachusetts, and this results in only the sickest of the sick getting admitted to inpatient units. And breakdown uses Wisconsin as a model, and it compares

Civil Commitment - varies by state

SPEAKER_00 19:47

the civil commitment criteria of Wisconsin and Massachusetts. Massachusetts does little to prevent danger, whereas Wisconsin, at least at the time of publication, had the best involuntary hold law, probably still the case now, because the governments move quite slowly. At the time of publication, I found Wisconsin had the best involuntary hold law because it takes a preventative approach rather than requiring that danger be already in progress before treatment is invoked.

SPEAKER_03 20:24

And I would be willing to bet Wisconsin is still ahead of Minnesota because this law that I mentioned is a county option, and the counties, there's only two that are looking at opting in, but they haven't yet opted in. So all of this leads to what I think we see in every single state. And but from the perspective of you as a professional, could you tell us how you see the

The revolving Door of Psych Hospitals and Jails

SPEAKER_03 20:48

revolving door where people with serious mental illness cycle in and out of the hospitals and the jails? And I'm especially interested in this one because our son has cycled out in and out of jail a few times as well.

SPEAKER_00 21:02

So, as you mentioned, some states have overly restrictive involuntary hold laws, such as by demanding that the danger be imminent. And this contributes to patients rapidly cycling to and from both inpatient units and hospital emergency rooms, as well as to and from jails and prisons. Administrative pressure to reduce hospital emergency lengths of stay can result in premature discharges. Without proper treatment, symptoms worsen and readmission to emergency services is inevitable if they don't inflict serious injury on themselves, others, or get arrested first. While the inpatient lengths of stay have declined since deinstitutionalization, the readmission rates to inpatient units have increased. So we see the revolving door. Not just in emergency services, but also in the criminal justice system and patients coming in and out of inpatient units.

SPEAKER_02 22:10

You know, it's interesting. One of the things that I find that very few people are aware of is the AOT and how that can be used. I'm wondering if you could tell us a little bit about that and you know some of the tools that you think could be used to curtail this revolving door.

Anosognosia

SPEAKER_00 22:30

So approximately half of people with schizophrenia or bipolar lack awareness of their illness. This is called onasygnosia. And psychosis involves the most onasygnosia. This results in treatment non-adherence. Anosygnosia is the most common reason people don't adhere to treatment recommendations. And for people with psychosis, with anasygnosia, brain deterioration often occurs long before enough psychiatric treatment is obtained. Even after the treatment has been sought, it can be difficult or impossible to alleviate the damage already done.

AOT

SPEAKER_00 23:15

Breakdown makes a sound case in favor of assisted outpatient treatment, typically referred to as AOT. This is an evidence-based tool that's widely underutilized in the United States. AOT helps a subset of the population with serious mental illness who are not adhering to their recommended outpatient treatment plans. It usually involves court-ordered adherence to outpatient treatment plans. I have heard of some AOT programs that don't involve the court, but the court order is vastly preferred because of the black robe effect. The black robe effect is the tendency of people to adhere to the order of a judge because of the judge's power and authority. And all the evidence I've read shows uniformly that AOT reduces rates of homelessness, incarcerations, violence, poor self-care, and hospitalizations. All states and Washington, D.C. allow AOT except for Massachusetts, Maryland, and Connecticut, even though the 21st Century Cures Act of 2016 helped to normalize it and alleviate its controversy.

SPEAKER_01 24:42

And of course, I live in Connecticut and we don't have AOT. And you work in Massachusetts with no AOT. I've been involved in advocating for that. But again, we come to this like, well, they're people and they have rights, but you don't hear people saying that about someone with Alzheimer's. No, let them wander the streets. It's fine. They just have dementia. And I wonder where the disconnect is. I

Peer Specialists and Anti-Psychiatry

SPEAKER_01 25:06

want to move to another topic that is kind of controversial and is something that is especially controversial for this audience here of three moms, because our sons have schizoaffective or schizophrenia. And it's the peer specialist and the anti-psychiatry movement. And I liked, obviously, I liked your take on it. I put it in my review on my blog, but let's take them one at a time. So what is breakdown state about peer specialists? And I don't want to take anything away from anybody or anything that's currently working, but for the severely psychotic, what happens sometimes with peer specialists?

SPEAKER_00 25:46

Well, I've noticed in my advocacy that a lot of peer specialists seem to uphold anti-psychiatry, which is the belief that mental illness doesn't exist. And to be a peer specialist, one must only have experience with being diagnosed with mental illness or have been traumatized in some way or have experienced what they refer to as an extreme state. When I testified in favor of AOT at the Boston State House on July 17th, 2017, most of the opposition came from peer specialists who refer to themselves as survivors with lived experience. Now, not all peer specialists uphold anti-psychiatry. I'm sure there are many peer specialists out there who have helped psychotic people tremendously. But I believe there is a danger to allowing them to have too much power in the system. At the hearing, I was stunned at their arguments against AOT. Instead of identifying mental illness as pathology originating from the brain, they berated psychiatrists for labeling people with psychiatric diagnoses. Instead of referring to auditory hallucinations as being a sign of mental illness, they promoted the notion that hearing voices not there is simply an extreme state of altered reality. So they weren't willing to acknowledge that this is a mental illness. Instead of indicating that psychosis is brain-based or that no one knows the cause of schizophrenia, one person testified that she believed her trauma caused her psychosis. And finally, instead of pointing to the limitations of the Rogers authorization, which enables mental health professionals to forcibly administer antipsychotic medication, another person testified that the Rogers monitor is already forced outpatient.

SPEAKER_01 28:05

It's a hot topic, and thank you for your take on it. Look, I would like nothing more than for my son not to need medication. I think that would be great. I would love that. My experience shows me, and unfortunately, his experience doesn't show him because of anasygnosia that 24 hours without medication and he's incapable of working. And I'm not saying this is true for everybody, but for my son, 48 hours without it, he needs to go to the hospital. It is that quick. And do I wish he didn't need medication? Absolutely.

Mental Illness or Hidden Trauma?

SPEAKER_01 28:41

Many of us moms here have been told by people, well, what trauma did you inflict upon your son? That it would be so hidden deeply that it's taking the form of voices in his head, as if we did something wrong or there was trauma that we didn't pay any attention to, that is causing his voices to befriend him in this way. And what, you know, that would be nice too. I wish this were psychological and we could go to therapy and work it out, but it is a brain condition. And again, you're right, there are peer specialists, I'm sure, that are wonderful and do their job. But those who make it their business to try to get people off medication that really helps them can really get in the way. You wouldn't tell a diabetic to go off the insulin just because, you know, especially type one. So there are ways, and you say in the book that we may leave too much in the hands of people who are not qualified to prescribe or unprescribe medication. And as in Mindy's case, her son had a chiropractor who said, Go off the meds, take these supplements. And so it's not just pure specialists, but sometimes it's specialists that do it as well. So thank you for your take on that and a very fair take. Now, we've

IMD Exclusion

SPEAKER_01 29:59

talked about this before. We covered this in another episode, but we do hear a lot about the IMD exclusion. Can you briefly tell us why it should be repealed?

HIPAA solution

SPEAKER_00 30:10

IMD stands for Institutions for Mental Diseases. And the IMD exclusion is a law under the Social Security Administration. It prohibits the federal government from financially reimbursing Medicaid for inpatient psychiatric facilities with more than 16 beds for patients aged 21 and in certain circumstances 22 to 64 years old. It must be repealed because it is the main reason that inpatient psychiatric hospitals have eliminated so many beds. In fact, the number of inpatient beds in the United States has dropped by at least 96% since the 1950s, despite an increase in the population. In the 1950s, state hospitals provided respite and asylum for the mentally ill population. The states primarily funded these hospitals through taxes until the Medicaid program was created in 1965. The main motivation behind the IMD exclusion was to expand treatment outside of hospitals, but the lack of enough inpatient psychiatric beds has shifted the responsibility of housing and asylum of the mentally ill from state hospitals to our jails and prisons. So essentially, the IMD exclusion is federally sanctioned discrimination.

SPEAKER_01 31:41

Thank you. And we are actually running out of time. Can you mention a bit about HIPAA? But then if you can just so much. You've said so much that's so important. What would you say are the most important messages of breakdown? So a bit about HIPAA and the most important messages of breakdown.

SPEAKER_00 32:00

So I offer a solution to HIPAA getting in the way of good treatment from breakdown. Quote, when onasygnosia and psychosis render a patient unable to make sound judgments involving treatment recommendations and unable to sign any release of confidentiality document, it warrants an exception to the conventional procedure. If the clinical record already includes the name of a family member or friend, relationship to the patient, and the phone number or email address of the person, confidentiality law could allow for two psychiatrists to authorize an exception to confidentiality rules. The team would inform the patient of this override. This type of HIPAA authorization would enable the inpatient treatment team to have contact with the patient's closest family member or friend, which would enable safe discharge planning. Unquote. And in regards to the most important messages,

Final Messages

SPEAKER_00 33:13

the most common reason that approximately half of people with serious mental illness are unable to initiate treatment independently or adhere to treatment is on a signosia, which is again the lack of awareness of being ill. And it's a key factor contributing to the need for involuntary treatment. When schizophrenia goes untreated, the consequences can be deadly. I've detailed high-profile cases based on media reports and my interviews with family members in breakdown. These cases have involved people getting killed due to untreated mental illness. Now, this is bound to make many people uncomfortable for fear of stigmatizing mental illness by suggesting that people with mental illness are violent. Honestly, most people with mental illness are not violent, but a small subset of the population with untreated serious mental illness, especially involving psychosis, is more violent than the general population. Truth does not enhance stigma. I make a very strong case in favor of AOT. And another important message is that not coincidentally, Massachusetts has a very strong anti-psychiatry movement. And groups promoting the belief that mental illness doesn't exist are funded by the government and supported by the National Alliance on Mental Illness. And this is wrong, this is wrong.

SPEAKER_01 34:52

These are very, very important points. And we may get some comments and flack on it, but thank you for opening the conversation. We are out of time. I just want to thank you so much for being with us today for such a thoughtful interview, and especially for all your work with people like our sons. Your caring just comes through in the stories. And Mindy and Mimi, any last words before we show the book one more time? Thank you, Lynn. Thank you, thank you.

SPEAKER_02 35:24

Yeah, thank you. What we would do without the caregivers, I don't know.

SPEAKER_01 35:29

Yeah, you're amazing, and the book is wonderful. It is Breakdown, a clinician's experience in a broken system of emergency psychiatry. Thank you so much for joining us today. Thank you. Hey, thanks for joining us for this episode of Schizophrenia Three Moms in the Trenches with Randy Kay, Mindy Gryling, and Miriam Feldman. To get in touch with us or to learn more about our books, please visit our websites at MiriamHyfenfeldman.com, MindyGryling.com, or RandyK.com.