An in depth discussion on the complexities and individual considerations of involuntary treatment with renowned mental health law expert Professor Elyn Saks. Take-aways from this episode could provide a framework to ensuring maximum compassion and better access to care for those with serious mental illness.
An in depth discussion on the complexities and individual considerations of involuntary treatment with renowned mental health law expert Professor Elyn Saks. Take-aways from this episode could provide a framework to ensuring maximum compassion and better access to care for those with serious mental illness.
Greetings and Thanks for including chat chats in your day. Chat chats as a podcast series devoted to powerful discussions in mental health. My name is Todd crooks, and I'm executive director of Chad's Legacy Project, a Washington state based mental health advocacy nonprofit focused on education and innovation within the mental health system. I'll start this our second episode by saying Chad chat is not just intended as mere discussion with my guests, we're going to try and identify roadmaps to success. What does success mean? It means clear improvement in the access and effectiveness of mental health care. So here we go. Today's topic is complicated. It's controversial for a long time. It's been void of innovation. It's the subject of involuntary treatment. involuntary treatment is that which is provided without the consent of the patient, including and despite refusal of that treatment on its face, it seems fairly authoritarian void of civil rights and lacks provider patient partnership, the kind of partnership that's needed in this kind of care to properly aid in the treatment outcome. It can appear to be a shortcut to care that which bypasses the complicated dialogue with a potential patient in creating cooperation and acknowledgement of need for help and trust of that care path. That said, we need to explore how complicated this really is. The brain is just an organ like any others in the body like the heart, kidneys, lungs, etc. but also happens to be the most complex computer on the planet equipped to not only compute but learn abstractly conceptualize and foster Ray of emotion unlike any man made computer to date, well in mental illness, several additional complex things are at play. First, the insidious stigma of mental illness and that built in stigma and through lack of understanding of mental illness. Oftentimes we grow up feeling like we are in some way broken or too weak to think ourselves out of a mental illness, which of course, is not the case. But there's also the complexity of Anna's agnosia Anna signo. She is a symptom of severe mental illness experienced by some that impair a person's ability to even understand and perceive his or her own illness. About 50% of individuals with schizophrenia and 40% with bipolar disorder have symptoms of Anna signo Xia it's also seen in Alzheimer's disease. So as we talk about this today, it's important to understand that Anna signo ship is not a mindset, it's a physiological condition. There's a growing body of evidence of anatomical damage in the part of the brain involved with self reflection. Why is this a big deal? Here's some data for you. According to Nami, USA, in 2018 36% of US adults never received treatment for an existing mental illness that they had. And even higher in that year, age six to 17 never received treatment. 30% of our incarcerated adults in state and federal prisons suffer from a serious mental illness even more frightening for the future. Over 70% of youth within the juvenile justice system nationally have a diagnosed mental illness. serious mental illness causes over 193 billion in lost earnings per year in the United States. 90% of suicides have an underlying mental illness, suicides, the second leading cause of death in people aged 10 to 34. Currently, we could talk numbers for hours, but it's a vices to say that mental illness is responsible for lost productivity, decreased physical health conditions and quality of life. Not only do these things contribute to a shortened lifespan, but are responsible for unacceptable and preventable suicide rates that affect especially youth, in tragic ways today, and I can tell you, my wife and I live with that every day. With the complexity of this issue, there will always be instances of denial of clear need for care during apparent crisis. And we want to be a compassionate people. But how do you define compassion in this case, who decides and when our guest today is uniquely qualified to help shape that conversation and the debate that has gone on for decades. She's the Oren B. Evans, distinguished professor of law professor of psychology and psychiatry and the Behavioral Sciences at the USC Gould School of Law, director of the sacs Institute for mental health law policy and ethics. She's also the Adjunct Professor of Psychiatry at the University of California San Diego School of Medicine and faculty at the new center for psychoanalysis her alma mater include Vanderbilt, Yale, and Oxford. She is Professor Ellen sacks. Professor Sachs has lived with schizophrenia since her young adult life. her memoir, the center cannot hold my journey through madness describes her struggles with schizophrenia, and her managing to craft a highly successful life for herself in the face of a dire prognosis. She's won numerous honors, including a 2009 MacArthur Fellowship, and I can think of no better way to bring her into this conversation by first sharing her closing line from her TED Talk filmed in 2012. That to date has had well over 4 million views.
Professor Elyn Saks :Recently, a friend posed a question if there were a pill I could take that would instantly cure me would I take it? The power, Reiner marry real key was offered psychoanalysis he declined saying don't take my Devil's away because my angels may flee to my psychosis on the other hand as a waking nightmare, which my devils are so terrifying that all my angels have already flooded. So what I take the pill in an instant. That said, I don't wish to be seen as regretting the life I could have had if I had not been mentally ill, nor am I asking anyone for their pity. But I rather wish to say is that the humanity we all share is more important than the mental illness we may not. But those of us who suffer with mental illness want is what everybody wants, in the words of Sigmund Freud to work into love. Thank you.
Todd Crooks :Professor Sachs. It's it's a true honor to have you join us today. Thank you so much for your time, and I'm really looking forward to our our discussion.
Professor Elyn Saks :Thank you, Todd. I really appreciate the invitation to come speak, and please call me Ellen.
Todd Crooks :Will do. Thank you. Okay. So let's get into this. I'd like to think that any mental A healthy individual instinctively aspires to compassion for their fellow human being. And there's a debate raging on the definition of compassion. We see a subset of homeless populations debilitated by mental illnesses subset of the incarcerated that were placed in jail as a result of unchecked mental illness. And even families that suffer for loved ones that are clearly struggling but refuse the assistance that they they clearly need. Can you speak to the concept of compassion? And who determines the bar in cases of obstacles like self stigma and Anna signo Xia
Professor Elyn Saks :okay. It's a really excellent question kind of one of the one of the big questions. When I think of compassion, I think of two things. One is feeling for people's struggles and helping them get care. That's one thing helping them get care are in opposition to their preferences is another thing, it still may be compassionate. To do that, on the other side, you might think of compassion as part of treating people with dignity and respect, and supporting, you know, supporting their autonomy unless they're like incapable of making decisions to protect themselves. So it's kind of a two edged sword, I think.
Todd Crooks :So in the case of somebody who is truly resisting any care, whether it is that they have that stigma that they grew up with, it's getting in the way from them accepting the fact that they need care. The I guess the age old question is, is it more compassionate, to have them be in charge of their own care in spite of that denial, or is it more compassionate to administer care, at least initially, until it's deemed that they're stabilized? I don't quite know the best way to phrase
Professor Elyn Saks :Yeah, I'd like to talk a little bit about what you mentioned earlier is self stigma. I think so. I think stigma is horrible. In this context. The worst thing about it is that the tourists people from getting care and people shouldn't have to suffer, but they will if they don't. If you don't take care to sickness problematic, people have self stigma. So Glenn Close the actress, her sister's bipolar, her nephew, Schizoaffective. And she did a public service announcement of people walking around Grand Central Station with T shirts that schizophrenia serves them with bipolar, etc. And she gave me a T shirt that said schizophrenia. And the first thought I had was, well, I don't really wear t shirts to work during the week, but I do wear them on weekends. And then I thought, do I really want to wear a T shirt that advertises I have schizophrenia? And then I thought I've also had cancer and people wear armbands and pins and T shirts, with pride in solidarity and without shame. And that's the way it should be with men. Almost, but we're we're definitely not there yet. Unfortunately, I think one of the best ways to decrease stigma, I think the studies show people coming to see mental illnesses, brain disorders doesn't much stigma but putting a human face on does. So to the extent that people can come forward and tell their stories without, you know, risk or danger to their, you know, careers or their relationships or whatever, I think that's a really good thing to do. And as negotiators kind of an interesting thing, my understanding that with schizophrenia 50% of people have that which leads them to not accept that they have an illness or understand that they had an illness. And some people say that well, that's a reason to involuntarily treat them. But my thought is you don't you know, you can say to someone, I know I hear you saying you don't have an illness. Let's just put that to the side. But you've been complaining about sleeplessness and jitteriness, and these pills can help help with that. Why not give it a try? might work with some people. I tried that with a serious bipolar friend and he was just curious. So it's interesting.
Todd Crooks :And one of the things that they they tried In fact, there, it's been in place since 2003. In Washington State is what they called a mental health Advanced Directive. It was an opportunity for somebody to well, they were at least able to identify that yes, even if they say they don't want care that they really do much like an advanced directive for somebody with other things. But the challenge was first responders and providers didn't give it the time of day because when they've got somebody standing right in front of them who can apparently carry on a conversation, they defer to that rather than this piece of paper, and I know that you are beginning to undertake what down there, you're calling a psychiatric Advanced Directive. And I was wondering if you could speak a little bit to that.
Professor Elyn Saks :Yeah, yeah, I think psychiatric advance directives are really important. A long time ago, Dr. Alan stone from Law School made famous the idea of the thank you theory of civil commitment. So people are going to be putting the hospital against their will. But by the end of this day, they're going to be grateful that they were there. And I just think of psychiatric advanced directives, especially following Of course, hospitalization is just putting back to the test if you're really thankful, what what do you want to happen going forward? And it's really important because again, it fosters autonomy, you're deciding what should be done and it also fosters well being because you're going to you're going to be getting care. One question is, you know, how on earth are Peters gonna know about that anyway, and one thing we've suggested or we're thinking about are like bracelets like how, you know, your license says you're an organ donor, you wear a bracelet that says, you know, if I should become text quickly, l here's where I want to go and what kind of treatment I want to want and who I want to be informed and stuff like that. And I think that could be really helpful when we actually hire I have a colleague I'm working with on our study in Texas who is writing those psychiatric advanced directors, she works at a legal services organization, and we're going to be studying, you know, how how that works and how it affects people. One concern is that, you know, just may not be observed. I remember being in an intake setting for physical illness and the intake person asked if I had an advanced directive, and I said yes, and she didn't ask what was in it or where it was, or anything like that. So it's sort of like pretty pointless if people don't honor it. But on the theory that people sort of know themselves best and care about themselves most when the person is in a good state of mind saying what they want, I think that's incredibly, incredibly important. And I am I am studying supported decision making, which we can discuss if you want in poor medical centers and then supported decision making and psychiatric Advanced Directives in two or three counties in Calvin yet. So we're looking forward to seeing the results we're going to look at, you know, who people choose as their supporters and their satisfaction with the decision making process, and downstream effects on quality of life, like, more independent working and more independent living and less hospitalization and things like that. So stay tuned. We're just, you know, we're just getting started in the last month or two, but we're going to hoping that we can get some, you know, useful information.
Todd Crooks :Yeah. Void of any kind of workable, Advanced Directive, is there such a thing as a compassionate, involuntary psychiatric hold? What do you think that would look like?
Professor Elyn Saks :I mean, I think that's, you know, what we want is that when we in voluntarily hold someone, it's as a result of compassion. I can think of many examples where we're being the camp ally uses, you know, if you say, you know, gosh, I really wish I could take this medication. It's helped me in the past, I'd really liked it to use it, but a voice is telling me that if I do, it'll cause a nuclear explosion. I would say that person lacks capacity to make the decision would have wanted the medication of competent and that we should, we should administer over overheard objections, I think there are cases where we should give involuntary care both for the sake of the person and also as you say, if someone's dangerous to other people, that's, that's important as well. Although it's interesting that we don't confine people who are dangerous to others who don't have mental illnesses. And as you know, you know, people with mental illness get a bad rap or network very dangerous and in fact, yeah, exactly not the case we're much more likely to be victimized right and to victimize anyone
Todd Crooks :know when it comes to stigma and, and a signature are tough obstacles to overcome for a provider, when the initial contact and trust are so critical, and there's a growing provider service In Washington state called the certified peer counselor that seems to have real problems. There's a lot to show that appear counselors, as I'm sure you know, can be real effective in developing that initial trust with someone in crisis. Have you observed that in California, might you see a peer counselor being part of inpatient care or initial contact in the emergency department or even perhaps, as upstream as the initial contact in the field?
Professor Elyn Saks :I actually think it's a great idea to have certified peer counselors or you call that also a pure Bridger. Right. And it could be at the initial contact, it could be in the ER, it could be over time. I think nobody understands someone suffering with psychosis as well as another person who suffered so you feel sort of more understood and empowered. I also think it's also true with cancer, which I've had I go to a cancer support group, and I listened to people who have much more serious illnesses. In mine, we leading lives of dignity and well being. And it's sort of inspirational, it sort of gives me a lot of strength and a lot of motivation. I think the same thing could happen if a peer to peer approaches you. And I think, you know, it has been used in different places. I don't know how widespread and I think it's supposed to have, you know, decent, decent effectiveness, and it's obviously very good for the PR advisor or peer counselor as well. So I'm, you know, very much in support of that.
Todd Crooks :Going back to the psychiatric advanced directives, I think, everybody, everybody loves a good acronym. And in this case, I think it's called the pad.
Professor Elyn Saks :Right?
Todd Crooks :Is there a need to hold a document opportunity like this as a national document? Or do you think it's more appropriate for each state to have their own pad or mental health Advanced Directive Within each state, are they unique to states?
Professor Elyn Saks :So it's a kind of issue that's considered a statewide issue apart from federal constitutional issue. So this would be a statewide initiative that said, in a lot of state law concepts, we have model laws that are put forward by the bar association or the American Association of law schools, or whoever's putting it together. So that, you know, each jurisdiction can kind of look at what kind of model is and then modify it for their own purposes or, you know, use it wholesale, and that's very common with a lot of issues like that, like this. And I think, you know, input from both state and federal kind of bodies would be a good thing.
Todd Crooks :There's no question that that in this particular subject, you're, you're absolutely a national leader in this. Do you see any other individuals or organizations that you regard as leader in this area this need to do better for those who who need help.
Professor Elyn Saks :Why thank you for the kind words. There are organizations, I think that are in this space trying to help out like the Babylon Center for Mental Health in Washington DC although it has a national reach and mental health advocacy services here in LA. I'm on both of their boards mha s we do special ed and benefits and you know, all sorts of different things. And I think they do a really, really good job. So, you know, there are organizations like that. And then there have been people who've been very important in this space, including Kara's Mirek, who was consumer with schizophrenia who worked for I guess it was Samson and the government on stigma she's really amazing. Carrie Cheney, who wrote a book called manic she's a mental she's a bipolar lawyer. And now writer, she's written a couple of other books. She's done some really good work. Patrick Kennedy, of course, I don't think he's written any books, but he's a, he's come forward as someone with bipolar and I think substance abuse and he, you know, has put an important face on, on mental illness. People lost Sadat a couple of years ago, a really big advocate psychologist named Fred freeze. He had schizophrenia. He actually coined the phrase, please stop using the N word when you refer to patients with mental health challenges. In other words, not. I don't know, it's kind of clever.
Todd Crooks :I just have a couple more questions and perhaps they're the most important first, I want to ask you, what would you like family members and peers to understand about the idea of compassion and support for a loved one that insists they're fine even though from the outside looking in, they seem very much not to be
Professor Elyn Saks :Thank you. One thing I would say is that the thing that most dominates many people with mental health challenges is fear. We're afraid we're afraid for our safety, we're afraid for other people. So that's, that's an important thing to understand. And as a family member, if someone is saying psychotic things, you get one end, you could say, Oh, that's just not how could you believe that? At the other end of the spectrum, you could say, oh, gosh, that's really scary. Let's put up cameras and alarms all over our apartments so we don't get broken into and kill. And then in the middle, it's kind of like, gosh, I hear what you're saying. You're really really scared. We'll take care of this together. You know, let's rely on each other it's going to be okay. I love you. So there you know, there are different things as a as a parent or as a clinician that you can do when someone is presenting you with you know, Frank delusions.
Todd Crooks :I hear you saying that both ends of The spectrum carry a lot of judgment. And then when you find that, that center ground, it's free of judgment and maybe received a lot better.
Professor Elyn Saks :I never thought of that. But that's exactly right. really gotten what I just said is,
Todd Crooks :well, turning that to a different population. What would you tell providers? If you had a roomful of psychiatrists and psychologists? What would you tell providers?
Professor Elyn Saks :I think, you know, you want to treat people with dignity and respect and as human beings whose decisions are important, I think you have a as a lawyer does a counseling obligation. You don't want to tell people what you think is going on and what you think they need, but you want to try to support them in making their decisions. I went 10 years trying to get off medication. And in the end, when I got on a continuously my life got a lot better. But I still, I wish I had been smarter sooner, but I am glad that I wasn't forced that I was allowed to come to the decision or my own way in my own time. Obviously, if you have the patience by end, it's much more you know, sustaining or continuous kind of situation to be in that if you are forcing them. And once you stop using force have no incentive not to go back if they're committed, they do. So I think that's, that's really important too. And I suggested a study to some people, including Dr. Steve martyr at UCLA, about, you know, one group of people, being people who get on meds right away, are very committed here. And at the other end, they're totally opposed, never get on them are always trying to get off and in the middle, or people who were in that last group who kind of tip over to wanting beds, that's the middle group. I think we want to try to study ways we can get people to want care, rather than wait more ways to force them to get care, because if they want it, it's going to be more sustainable and effective.
Todd Crooks :It seems to me like you're describing a slightly larger business. bit of time on the providers part to listen and develop a relationship before you try to move immediately to that care path.
Professor Elyn Saks :Exactly, exactly. You want the person to feel understood, you want the person to feel connected with the person to feel trust. A lot of a lot of the issues are resource issues. So sometimes I'll give a talk and, you know, a person in the audience, a clinician will say, you know, I can see my patient, you know, once every three months for 15 minutes, you see a doctor every day of the week, how on earth is my patient supposed to do as well as you? And I'm like, you're totally, you're totally correct. You know, I know I have a lot of resources and a lot of advantages. And I feel some survivor's guilt, but I'm not going to give it back. But we really need to step up. In fact, Steve martyr at UCLA, and I did a study with some others on high functioning schizophrenia. So people were doctors and lawyers and PhDs and full time teachers and CEOs of knowledge. Prophets, I want to ask the one who's a internationally known schizophrenia expert. You know, what do you think leads to people being high functioning and our sense professional, managerial, technical, whatever? I don't know. Well, I think the real question is how many could be if we devoted appropriate resources? I thought he was exactly right about that. We just need to step up and get people care. And I really sincerely believe that if we do give people good care, and work with them, it may take a while they're going to, in the end, be able to live up to their kind of pre illness potential.
Todd Crooks :In summation, Elyn, what do we have to do to make things better our topic is involuntary treatment. And we certainly don't have that figured out in Washington State. I know you're working real hard on the pad, and works just starting there in California, which indicates that there's work to be done in California too.
Professor Elyn Saks :Absolutely.
Todd Crooks :Can you put in a box for me three things that need to be fixed and what you would try to do to make that happen.
Professor Elyn Saks :The three things would be providing more resources, figuring out ways to use less force, and doing programs to diminish stigma. Those are I think that three of the three kind of big ticket items in this in this place. Okay. And we have a long way to go on all of them. But I think there's interest I think there's the Well, I think there's more conversation about mental health. I sometimes have wondered whether with the virus, that it's going to give people more understanding of sort of fear and depression and anxiety. Because, you know, many people are facing that kind of challenge for the first time. You know, my, you know, I run this institute and I have students apply every year to be part of it. And, you know, over the last 10 years, the first nine years, I I would say like 85% self disclose, and having mental almost or having a close family member or friend. And the first nine years, only one person ever self disclose when we went around the room to say why we were interested in this area, because kind of stunning for law students who are all about dignity and liberty and things like that. This past year, eight out of the 10 students self disclose, including one woman who said I have never before said this out loud outside my family, I have bipolar one. And you know, it's not a study, it's not scientific and maybe it's just chance but it's kind of interesting that that that that more more students are willing. And in fact, just this last year to the students have formed a group called law students for better health on their, their faculty supervisor or advisor to maybe things are getting better, maybe
Todd Crooks :now and I can't tell you how appreciative I am of your time and your graciousness, and I really, really appreciate your work. And we'll we'll hopefully, chart a course with this discussion. Yes, thank you. Okay. It may seem like there's a lot to unpack here. But I'm gonna take a minute to do that before we finished today. Because if we can understand what needs to be done, then we don't have to talk about it anymore, and we can get stuff done. So I asked Professor Sachs to provide three things she thought needed to be done. The first thing she said was more resources. And the first thing that comes to mind when you talk about resources is Oh, we have a shortage of psychologists and a shortage of psychiatrists. And, yes, we do. That's always going to be the case if we're relying on those particular professionals to fix all of the problems in the mental health system. But what I would argue is And what came out of this conversation is, there are other resources that we can use to fill those gaps. So we talked a lot about certified peer counselors, people with lived experience could connect with somebody who was in the midst of crisis in ways that a different kind of provider could not. Those peer counselors represent an incredible opportunity and it is multi layered. Because the opportunity to develop trust with someone that's in the midst of crisis is almost impossible, unless you can provide true empathy. Remember, we're dealing with the brain, we're not dealing with a liver or lung, we're dealing with an organ that has much more complexity and requires trust in order to accept a particular care paths that they may feel they don't need appear can break through those barriers of trust and show that in spite of the stigma somebody may already have about themselves, that there is an opportunity to get better. The other layer to this that we have to acknowledge is the fact that peer counselors do represent an extremely cost effective addition to this care path. When you look at the data around improved outcomes, when you involve a peer counselor, it's pretty undeniable that that kind of cost savings and that kind of resource addition is what private payers or insurance companies are looking for in order to create a more robust reimbursement system. If insurance companies were able to see an improvement in outcomes with a very cost effective method that could be a complete game changer. So to address resources, probably the best way to do that right now short of creating All kinds of incentives for people to become psychologists and psychiatrists beyond what incentives are already in place now is to embrace this peer counselor workforce and develop it and make this part of the standard care path. We have to embrace Advanced Directives in psychiatric instances. We do it for physical health, we have to do it for behavioral health too. Because if we are going to confront involuntary treatment as an issue, we have to be able to give the individual the choice as to whether or not that happens. It's not always going to be possible, but it is an incredible tool to address that question of compassion and know that in a state of lucidity, an individual would want this number two on Professor Sachs list was less force. Of course there are always going to be cases especially with Anna signo Xia where an individual just cannot recognize it. They need help. And in those cases, it's widely understood that involuntary treatment, at least for the first onset is going to always be a component that we have to wrestle with. But one thing that we have to understand when we're trying to reduce the force that is needed to provide help is that these discussions are much more complex than somebody that has inflammation and a knee. with mental illness. You've got to be able to invest that time it takes to really work through the nuances of what that patient might be experiencing. To reduce force in an involuntary situation. We've got to invest the time to try to reach that individual that seems unreachable and it requires training. It requires patience and it requires that investment of time. Number three on Professor Sachs's list stigma reduction. There are two facets to stigma reduction. Education is absolutely the key to stigma reduction. Because of the crisis we face in America with youth suicides. It must begin with mental health literacy in schools. There's plenty of indication out there now that if you teach a mental health literacy curriculum in schools, you can effectively eliminate stigma on a generational level. That's part of it. We as a community need to promote and participate in awareness programs and training, much like we did when we got really good at training our communities and CPR. There are several great programs out now Nami has a wonderful program called ending the silence and there's a national program called Mental Health First Aid that goes a long way not just toward awareness, but in providing tools to aid somebody Buddy that's in the midst of crisis, if we commit to improving ourselves, in turn, will improve our communities. And there you have it, our marching orders. People have talked about it for years. But there are fixes. We've identified them. Let's get to work. Let's make things better. So thank you again for listening to Chad chats. I hope you found this engaging. We'll be back with other big topics and more big guests. And hopefully, we'll identify some things that we can do like this episode. Thank you again to Professor Ellen sacks, who provided so much insight today. Thank you to you to what I assume will be working in helping us get these things done. This is for you, buddy. We'll chat again Transcribed by https://otter.ai