Hello and welcome. I'm Dr. John Torres, the Director of Digital Psychiatry at Beth Israel Deaconess Medical Center and technology expert for SMI Advisor. I'm pleased that you've joined us today for SMI Advisor's webinar entitled Strategies for Engaging Individuals and Families in Complicated Treatment Decisions. SMI Advisor, also known as the Clinical Support System for Serious Mental Illness, is an APA and SAMHSA initiative devoted to helping clinicians implement evidence-based care for those living with serious mental illness. Working with experts from across the SMI clinician community, our interdisciplinary effort has been designed to help you get answers you need to care for your patients. The moment you've all been waiting for, so I'm happy and proud to introduce you to our faculty for today's webinar, Dr. Ken Duckworth. Dr. Duckworth serves in many roles, including Medical Director for NAMI, the National Alliance of Mental Illness. He's a double board certified in adolescent and child psychiatry. He also has completed a forensic fellowship. Dr. Duckworth is currently the Assistant Clinical Professor at Harvard University Medical School, and he has served as a board member for the American Association of Community Psychiatrists. Dr. Duckworth has held clinical and leadership positions in community mental health, school psychiatry, and now also works as a Medical Director for Behavioral Health at Blue Cross and Blue Shield of Massachusetts. Prior to joining NAMI in 2003, Dr. Duckworth served as Acting Commissioner of Mental Health and the Medical Director for the Department of Mental Health of Massachusetts, as well as the Psychiatrist on the Program of Assertive and Community Treatment, or PACT, and Medical Director for the Massachusetts Mental Health Center. Dr. Duckworth attended University of Michigan, where he graduated with honors, and Temple University School of Medicine. He won the Patient Advocacy Award from the APA and is a designated fellow in the American Psychiatric Association. He's a wonderful teacher and mentor, someone I've worked with before. So, Dr. Duckworth, thank you so much for joining today's webinar, and I'm happy to say, please take it away. John, thank you for that kind and complete introduction. John appears to have read my entire CV. So, I want to thank you for that. There was something I did in fourth grade that I think you may have omitted, John. So, it's a privilege to be here. I want to thank you. This is a conversation I've been working on my entire life. My father, who is the most loving and wonderful person you could imagine, had very bad bipolar disorder. And from about the age of eight on, I begin to ask the question, how do I work with dad to get to better outcomes? This led me to the field of psychiatry. My family had no mental health or medical people in it. We were a bunch of salesmen and seamstresses, it turns out, if you look back in the family history. So, I'd probably be teaching in a remote college on Churchill, but for the opportunity that I was given by having a wonderful father with a terrible mental health vulnerability. So, throughout my entire life, I actually became a psychiatrist to better understand these questions. How do you work with somebody who's vulnerable? How do you see it from his perspective? The National Alliance on Mental Illness is a remarkable organization. And I'm going to tell you a little bit about NAMI in the context of this course, because my experience is the more engaged families are, the more engaged the individuals living with the conditions are, the better chance we have of getting good outcomes. So, I have no financial relationships with commercial interests or conflict of interest to report. I've worked for NAMI for 15 years now, and I've worked at Blue Cross liberalizing mental health and addiction benefits there for close to a decade. And I'm happy to take questions about that piece of the equation, which I consider an important piece of trying to improve conversations among people with illness. When health plans put unnecessary or gratuitous barriers in the way of care, it can get in the way. So, one of the things I've really worked on in that part-time role is to advance services for people with mental health and substance use disorder conditions. I won't be talking about that, but I wanted to mention it in case you had an interest in that. So, let's take a look at what we've put together for your learning objectives. On completion of this activity, participants will be able to define shared decision-making and informed consent, which are two well-related ideas. Interestingly, they have an interesting history that I'm going to talk with you a little bit about. I want to tell you about NAMI's signature programs and the randomized controlled trials that support the fact that they work. I've had so many people over the years tell me I wish I had known about NAMI sooner. I've had people say to me, NAMI has saved my marriage. If I had known about NAMI, I don't think my daughter would have killed herself. I just want to emphasize NAMI has 650 chapters across America. All these programs are free. People like me figure out how to get other people to support them. This runs the gamut from Starbucks that is supporting our frontline wellness initiative for workers. We do take money from the pharmaceutical industry to support programs like Family to Family. This is all fully disclosed. I have no relationship with anybody in the industry. NAMI just received a four star, which is the highest rating from Charity Navigator. We're also going to explore the risks and benefits of some concrete different treatment options. This will include the psychotherapies, some medications, and brain stimulation. These are all things as a practicing psychiatrist on an assertive community treatment team. In my five years of volunteering at the prevention and recovery of early psychosis program in Boston, I have found these conversations to be interesting, important, and compelling. I wanted to just share you some of my perspective on this. Those are your three learning objectives. Let's talk about shared decision-making. Shared decision-making was invented for the field of medicine. As you may know, the history of American medicine has paternalistic roots. It was very common in 1960 for doctors not to tell their patients that they had cancer. The concept of informed consent and the shared decision-making that travels with it is that it came pretty clear within just a few years. This was a switch that flipped from physician knows all, patient doesn't even get to know their diagnosis, to a more honest assessment of you have cancer, there are treatment options that you can be offered. The old school model in medical care was very paternalistic. The provider decides that you need surgery or chemotherapy or radiation. The more modern approach to this is much more, here's the diagnosis that the cells have shown on your pathology slide. I think the best path is for you to undergo chemotherapy, but there are alternative routes that you might take. This is a crucial distinction and it's just a little over 50 years ago that the entire medical community got on board with this. It's been a little slower in mental health. The reluctance to give people a diagnosis of schizophrenia would be an example. The history of not wanting to share a diagnosis of borderline personality disorder. The idea would be the profession knows more of the patient, but you don't share even the diagnosis. Now, one of the things that's harder in our line of work is diagnosis evolves. Many people who present with major depression, a whole subset of them will turn out to have bipolar disorder. It can be frustrating for the patient to know that their diagnosis has changed, but I saw this even in my own training, that there was a reluctance to tell a person that they had borderline personality disorder or schizophrenia, which is a good example of non-shared decision-making. This would be as if you withheld from a person that they in fact had leukemia. I found with some of my patients over the years that people who find that they have borderline personality disorder as a diagnosis frequently feel relief. Wait, there's a name for this? Wait, you're telling me there's a psychotherapy treatment that was successful in a randomized controlled trial to reduce the outcome of suicide? I'm continuously battling with suicidal impulses. I think it's a very interesting history. I trained in the 80s and 90s. I now have a little gray hair. Again, I think we've moved ahead. I'd be interested in your experience in the chat for those of you who are younger than I am, the next generation of caregivers, how this has evolved in your training. Dartmouth School of Medicine was the first to really take on decision aid tools and resources on the model of shared decision-making. You begin with the actual information. You have acute lymphocytic leukemia. The ALL has a serious diagnosis. Here's the treatment approach. Here are the side effects. Here are the alternatives that you could try, which might be radiation. It might be a bone marrow transplant, but we're not going to get a bone marrow transplant because you need to go through chemotherapy first. That's shared decision-making. Same thing. You appear to have a diagnosis called schizophrenia. I'm going to be with you, riding alongside of you while you go through this journey. I want you to know there are multiple treatments, medication. Science has advanced on this. I also want to make sure you don't feel alone because this illness can be isolating because there are negative social attitudes. I want to tell you about clubhouses, resources, and the National Alliance on Mental Illness, which whatever town you're in in America, as long as it has some people in it, you will find a NAMI resource for people. Shared decision-making would be, I think you'd likely benefit to some extent from a medication trial. There are side effects with this medicine. Do you want to proceed? We'll talk about people who don't know that they're ill and so-called anosognosia, lack of insight, lack of awareness. This is an 800 course as opposed to a 101 course. I'll discuss that briefly down the road. That's the brief history of shared decision-making. Medicine fully gets it now, I believe. I think mental health has gotten it for the most part, but because our diagnoses are more subjective and as you know, are structured in a reliability model. The DSM-5 makes it so that a social worker in Ann Arbor and a psychologist in San Mateo will come up with the same diagnosis. But as Tom Insel, my friend and the former director of the National Institute of Mental Health says, they're reliable, but are they valid? This is why many people experience changes in their diagnosis. I think this gets our shared decision-making off to a more complex start. I think it's just important to recognize that it's a little harder when you don't have a blood test. You don't have 120 over 80. It's a blood pressure that you can point to and say, here's your blood pressure. This blood pressure is now treated when your blood pressure was 150 over 100. You had high blood pressure. We've given you this compound. You seem to have minimal side effects. Are we good to go? Patient says we're good to go. Diagnosis, options, intervention, results. It's a little harder in mental health, but the principles are extremely important. I'm going to try to go to the next slide. The Dartmouth Center for Shared Decision- Making was the first center in the United States dedicated to encouraging doctors and patients to make decisions together. Services include provision of patient decision aids, decision support counseling, facilitation of advanced care planning discussions. This is sort of end of life questions. Very interesting to me that we still struggle in our society. Many people die in hospitals and most people report they want to die alone, at home with family. They want to die at home, surrounded by loved ones. Obviously, this has all been complicated by COVID. Obviously, the pandemic has changed many people's experience. I've been consulted by a lot of patients who are experiencing very difficult grief because they aren't with people. In the medical field, advanced care planning remains a core challenge for shared decision making. They have patient support, core volunteers who help patients think about and organize their questions and concern in preparation for an appointment with a medical writer. That is to say they know this decision matters to you. I think they're there to help you make sure you get your questions answered and organized. Dartmouth is not engaged actively in mental health discussions, but I view this as a cornerstone for the idea for how mental health practitioners and their clients, patients, consumers, peers, pick your language for your context, come to decisions together. Shared decision making. This slide is kind of a way to represent motivational interviewing. You're trying to work the problem of what the mental health provider sees, what the person in recovery sees, how their peers are influencing their decision making, and how the family sees things. Now, not everybody stays in the middle, but of course, as much time as you can say, we're working on a problem that you can see and I, the provider, can see. It's quite valuable to advance the shared decision making concept. A bonus is if the family peer support is also aligned with the decision. This, of course, is why our work can be so challenging because oftentimes the individual in recovery may not give permission to speak to the family and the family may see these decisions quite differently than the individual. So again, the shared decision making is between the mental health provider and the person with the illness process. As much engagement with the family as possible is valuable. As I mentioned in my introduction, I volunteered at the early psychosis program in Jamaica Plain, the Beth Israel Deaconess Hospital in Massachusetts Mental Health Center. As you know, America has had a transformation in the first episode of psychosis. When I trained, everybody was treated as if they had stage four cancer. You were given antipsychotics, sent to a clubhouse, and if you were lucky, and I mean lucky, you got a trial of CLOSEP. This transformation occurred at NAMI in the field of psychiatry, and this was led by the National Institute of Mental Health, Dr. Robert Heintzen, who won NAMI's Distinguished Service Award two years ago, and multiple individuals, Mitri Keshevan from the Massachusetts Mental Health Center, Pat McGrory, who led this effort in Australia before it came to America. One of the things I really took away from my Thursday afternoons at this clinic for five years is the earlier you get to a person, they're experiencing distress about their symptoms. This opens up the conversation, and they want their family involved. So if they, for instance, have paranoia, they're usually troubled about it as opposed to only believing it to be true. And so when you get to a person who's 19 years old, who's developed paranoia in college, their family is engaged in the coordinated specialty care model, they are frequently very open to this. So I've been impressed at how that public health framework, which the NIMH has been a national hero of, there are now 300 programs of first episodic psychosis everywhere in America, and there's a map on the NAMI website that you can go to. I had a person contact me, they're in Vermont, their daughter had the elements of an early psychosis, went to the treatment locator, there's a program 20 minutes from them in Burlington, Vermont. I had a family friend who had a person in their life in their early 20s develop what looked like the onset of a psychosis. It turns out the PrEP program in San Francisco was 50 paces from their home, and they didn't know it. I want to emphasize shared decision-making really comes in great when it's very early in the course. It's important later, but the opportunity is profound in the early stages of an illness. So shared decision-making requires informed consent. So just as the case of leukemia, you know, when I'm meeting with somebody who has, say for this case, bipolar disorder, you know, there are risks and benefits to every treatment. And Tom Gutile, one of my mentors in my forensic residency fellowship, really emphasized this idea of risks and benefits, goods and harms, that you really should lay these out. And for the risks, Tom was big on the most common and the most serious side effects. So Tom, for lithium, would say, for example, the most common side effects is you might find a tremor and you might find yourself going to the bathroom a little more often. Most serious side effects over years to decades would mean kidney damage. And this is why we're going to go with the lowest effective dose that keeps your episodes under control and why we're gonna be checking blood work. Now, bipolar disorder is a particularly interesting challenge because my father taught me very early in life that some people enjoy the experience of building up to a full manic episode. My dad was a salesman and the basement had a trophy about every third year. And the year after the trophy, he would spend about six months at Northville State Hospital. Well, I didn't put this all together until I was in medical school. And I realized that while he was hypomanic, he didn't want treatment. He was funnier, more interesting, more charming, more engaging. So obviously, as a 17-year-old boy, I wasn't gonna do the risks and benefits of lithium. I didn't know anything about this, right? I was a kid. But on the times that we engaged with providers, which was rare, there was no NAMI. There was no provider education to the family that was meaningful. My dad did get the message after a full episode that he would get out of the hospital and return to his life. He had a nice family, a happy family, and he was a fabulous dad. I think he missed his family. And so he would take the medicine because the benefits, this is the second point, of lithium would help him return to his life. Now, optimally, you wanna have a person who's having fewer episodes over time. And I think my dad had flashes of anosognosia, lack of insight, and then he had moments when he got it. Alternatives to lithium, of course, exist. And this is part of the conversation. If you found that that medicine wasn't effective or you could not tolerate the side effects or you had problems with your kidney or thyroid, you might look at alternative medicines. And this is the whole idea that you look at the challenges before you, as if you're both on a bus stop. This is Les Havens' model. Les Havens was a fabulous psychiatrist, first at Mass Mental Health Center and then at Cambridge. And he used to say, the best way to talk to a patient is as if you're both on a bus stop, looking out at the problems together. And I liked that very much. And I found, as a father of three girls, that my best conversations with them were often when I was driving, and I wasn't staring at them, but rather we were both looking off at the hopeful ice cream we were going to get if I had my way, or to visit a friend if they had their way. But this idea that you're alongside a person, looking at the challenges before you, as opposed to you being in a position of power and authority. Now, I appreciate this takes time, and I wanna acknowledge that. It takes time to do this work. I think it's really important for clinicians to have the time to do this work. The concept of capacity. As you know, mental health practitioners, social workers, psychiatrists, forensic psychiatrists, psychologists, we don't do competence. Competence is a legal term determined by a judge, and the rules may be different state by state. We're seeing with the vaccine rollout, the states are coming to very different conclusions about how they might organize priorities. I do wanna mention there was a paper in JAMA Psychiatry that showed people with schizophrenia have the highest death rate of any medical condition. This paper came out on January 27th in JAMA Psychiatry. And if any of you are in a state which is now adding medical diagnoses to the list of conditions that you can be qualified for a vaccine, I'm working the problem in Massachusetts, and I've been in touch with my NAMI colleagues, and I'm asking them to advocate for this. As an example, in Massachusetts, asthma was added a day or two after they came out with the first guidelines. That was advocacy. It's completely legitimate that people with moderate to severe asthma should be prioritized, but as schizophrenia has the single worst death rate of any medical condition, second only to being over 75 years of age, it's important to advocate for that. So that's something I just want you to meditate on as you're in different states all across the country. These people may not have the capacity and mental wherewithal to advocate for themselves in some cases. Some peer leaders with schizophrenia are fantastic at advocating for themselves, and they can talk about their experience and do a great job, and this is largely how we got mental health parity, is people with lived experiences and mental illnesses talked openly about their challenges. So capacity is, do they appreciate the situation? Can they understand the risks and benefits? Do they know there's alternatives, and can they make a choice? Those are the essence of capacity, and that's a clinical determination, and when you give somebody a course of DBT therapy or a course of lithium or recommend transcranial magnetic stimulation, which I'll talk about down the road, and they agree to it and you review the risks, the benefits, and the alternatives, you are essentially saying that you think they have the capacity to make these decisions. You think a person does not have the capacity to make these decisions. Each state defines capacity a little differently. As you've known from our recent election and from the vaccine rollout, we're very much a state-driven medical system in so many ways. You all probably have your licenses in one state or another, and while there are efforts being done by professional societies to have licenses travel across states, it's still challenging if you want to try to do this work. This explains the success of some companies that are trying to do multi-state teletherapy and telemedicine, right? Because getting a license in another state is a thing. The same thing applies in the definition of competence. Who can make decisions? This also happens in competence to stand trial, which is if a person with a mental health condition commits a crime, different states have different standards. And in my forensic training, I was very impressed that different states have very different standards for what is the competency to stand trial. That is to say, do you know there's a lawyer? Do you appreciate the lawyers working for you? Do you understand there's another side? Do you know the charges? Those aren't universal across the country. Same is true with criminal responsibility. If something very bad happens, initiated by a person with a serious mental illness, how Kansas defines it will be different than how Michigan defines it. These are state-by-state interpretations, sometimes informed by the Supreme Court, but typically not. HIPAA, FERPA, and 42 CFR are all information sharing and information protecting concepts. As you know, HIPAA is a lot, about privacy and sharing information. What's interesting is my read on this, this is to the great frustration of families, is when a person gives permission to talk to a family, that permission is actually allowed in an ongoing way. You don't have to ask every single time. Now, if they say, you can't talk to my family, well, then you have to stop, but you don't need to do this every single time. In our healthcare and mental healthcare system, families frequently feel cut out of the conversation. FERPA, as you know, is the Family Educational Rights and Privacy Act. It's a federal law that protects the privacy of student education records. So anybody who gets federal funds applies to this. So again, this becomes complicated when a student has a mental health vulnerability in a college. That's probably a special specific talk. 42 CFR are the regulations that prohibit information sharing for people with substance use disorder. The rules were once so tight that even health plans couldn't share with a treatment facility that the same patient had been at a different facility four weeks ago. Those requirements have been slightly lessened. All right, I'm gonna tell you a little bit about how to take families and increase their capacity. Both understand the rules, the law, and most importantly, how to engage with the person in their life, how to develop self-care, how to work together as a family. These are three programs I want to share with you. These are all free programs, and they all have a randomized controlled trial, in some cases, two actually, which I'll discuss. NAMI Basics is a program invented by the lead of research at the National Alliance on Mental Illness. Her name is Terri Brister, and Dr. Brister made a decision that families who have kids and adolescents with emotional challenges, emotional disturbance, serious emotional disturbance, or behavioral challenges of any kind, this is transdiagnostic, could have an educational program to help them think about this, to give them resources, and then also how to take care of themselves. NAMI programs are based on the airplane model of put the oxygen on yourself first so you can do a better job for the children in your lives. NAMI Basics is available online. So people can do this, and the numbers have gone up very substantially in the pandemic. You can do this program, which is seven hours, seven modules of several hours each. It's been demonstrated to be effective in self-care for parents, empowerment for parents, and in improving the communication. There's another randomized control trial that's in press, but I don't think I'm allowed to discuss that because it hasn't been formally released. NAMI Family to Family was invented by a psychologist who had a family experience with a loved one with schizophrenia. NAMI Family to Family is actually a work of genius, that has been given to more than half a million Americans. People, when I tell people I work for NAMI, most people say, I don't know what NAMI is. However, the one in 10 people who do know cannot believe that I work for NAMI because NAMI saved their marriage. Specifically, Family to Family saved their marriage. Family to Family was originally designed as a 12-week course by Dr. Joyce Berland, a psychologist and remarkable person. And it basically used to be held in synagogue basements or Lutheran churches or in community centers in the before times. That is to say, Family to Family was the idea taught by people who had been through the course. So they too had a family member with a serious mental illness. A lot of the teaching is about the science, what we know about serious mental health conditions, also about self-care, problem solving, how to take care of yourself to better take care of your family member. NAMI Family to Family is the flagship program. It was the first of its kind. And while multifamily groups developed by Bill McFarland have a great evidence base, and I am all for them, Family to Family has been able to reach many more people in that these programs are sign up and go for free. Some of this programming is online. This has been a challenge during the pandemic. NAMI Homefront has also demonstrated improvements in knowledge and coping skills and decreases in psychological distress or caregiving for families of veterans who are returning from war theaters. NAMI Homefront is also fully online. So NAMI Basics, I'm just gonna go through this a little bit. The study was led by Barbara Burns and Dr. Kimberly Hoekwood. Those are big names in child mental health and in evidence-based care. And this shows you the outcome. Families do better when they take NAMI Basics. The University of Texas at Austin is using a randomized controlled trial, again, led by leading thinkers in the child mental health space. This program is free. You can do this anytime you want. And our numbers are way up during the pandemic. And I'm grateful that you've attended this because you might be able to help somebody. This is typically for people who were under 18 in terms of understanding this resource. NAMI Family to Family is a class for families, significant others, and families by choice, aka friends or loved ones, who are engaged in learning how to support a person in their life with a serious mental health condition. Dr. Lisa Dixon, who is now at Columbia University, but worked with NAMI Baltimore and NAMI Maryland to do the first study, and her colleague, Dr. Alicia Luxtad at the University of Maryland, found that family members who completed the program demonstrated improvements in coping skills, problem-solving skills, and feelings of empowerment. How on earth do you do a randomized controlled trial of a psychoeducation program? Well, the answer is demand exceeds supply. And so Dr. Dixon and Dr. Luxtad followed people on their self-rated coping, problem-solving, feelings of empowerment for people on the wait list versus people who engaged in the program. The first paper came out in Psych Services in 2011, I think is considered a classic in the family psychoeducation space. Dr. Alicia Luxtad did a follow-up study that showed that nine months later, all the things still stuck. So, you know, a lot of medication trials show effectiveness at six weeks, and then we learn about their side effects later. What's cool about family-to-family is it works. It works in a randomized controlled trial, which is the highest level of science that you can do, and it sticks nine months later. NAMI Homefront is an education program for families, caregivers, and friends of military service members and veterans with mental health conditions. The program is rooted in the family-to-family model and can be delivered in person or online. So what's important about these programs, NAMI Basics and NAMI Homefront are online and ready to go. So if you have somebody who is a friend, a caregiver of a military service member, this is a great resource. The study that was led by Morgan Hazelden and our friend and colleague, Dr. Lisa Dixon, who I mentioned did the research on family-to-family, that both in-person and online versions of NAMI Homefront are effective in proving participants' knowledge and coping skills, as well as reducing the psychological distress of the company's caregiving. This was a study done in 2019. You probably know from the Center for Disease Control survey of mental health that was released in August 2020 that 42% of Americans report clinically significant mental health symptoms. One of the groups that had the most challenge was unpaid caregivers reported very high rates of mental health conditions. So these programs, Basics, Family-to-Family, NAMI Homefront, increase the game of the family in these educational conversations. They can understand risks and benefits. Because they know how to take care of themselves, they're better prepared to support the person that they love. Let's talk about some treatment options. Let's talk about some adventures I've had in this space. I'm going to discuss these large categories of psychotherapy, medications, and brain stimulation and how I might approach them. Knowing that you have developed your own style and your own way of connecting with people, I'm simply going to discuss kind of what I've come across in this space of informed consent, shared decision-making in these areas. It's cognitive behavior therapy. Now, patients want to know, are you a cognitive behavioral therapist? And as you all know, there is no certification, board certification, or way to demonstrate that you have cognitive behavior therapy. So this is among the most common questions I'm asked by NAMI. Well, I know somebody is a cognitive behavior therapist. Now, many therapists feel that they have training in cognitive behavior therapy, and I'm all for that. I think the key is to share how much experience you have with this model. If a person is looking for a time-limited, randomized, controlled, trial-proven intervention for anxiety, for depression, for exposure response prevention, for OCD. I think it's beneficial both from a relationship point of view and from an informed consent point of view to let them know that you trained with Aaron Beck at the University of Pennsylvania, that you have, you know, done a lot of work in this field and many people say they integrate this into their clinical work, which is fine, but you just need to let people know that because I think it's a fair question if they're looking for something specific for you to be transparent about your experience. So you support the person using their language, so whatever that may be, if they call it panic even though it's not truly panic, you explain one time, I don't consider this true panic, but we're gonna go with that because that seems to be the word that means something to you. Know your own thoughts and feelings is the goal of cognitive behavior therapy and the idea that you're going to be examining critically your thoughts in cognitive behavior therapy and it's a helpful framework to lay this out for people. The idea is your automatic negative thoughts can get the best of you as they can get the best of everyone. One of things we're going to be doing is challenging your automatic negative thoughts. Turkington and Kingdon from England invented cognitive behavior therapy for psychosis. I had them fly to the NAMI convention about three years ago. They were absolutely fantastic in laying out how they help a person critically evaluate their voices. He gave the example of a patient who said, I'm a terrible person and I should die because the voices have instructed me so. This is I think Turkington said that. Kingdon then role plays the patient. Now what we found through the conversation is the clinician said, what's actually the evidence that you're a terrible person and you should die? What's the worst things you've ever done? Which is a conversation point that I might not have asked, but I learned in the CBT measure. The example given from a true story was, I sold a comic book when I was in school. That's all you've got for being a terrible person. Well the voices say I'm terrible. So cognitive behavior therapy critically examines the thoughts or hallucinations and places them in a perspective. Dr. Kate Hardy of Stanford is a national hero on trying to promote cognitive behavior therapy for psychosis. I think it's just really valuable to have someone trying to promote a model that we know works from England. If you get a chance to see Turkington and Kingdon at any APA presentation, I highly recommend it. They are brilliant. They're funny. They have a kind of Monty Python style, but they convey information. They were one of the highest rated speakers I've ever had at a NAMI convention. They talked me a lot about CBT. They also work with the families and the idea is that the family learns this shared language. Well that's your automatic negative thoughts again. For the person who's really worrying, as you know, one CBT technique is I want you to spend two blocks of time during the day and have a designated worry session. I want you to do that and the family can reinforce that, but we're not going to worry about this all day. Something that's unlikely to happen. We're not going to worry about it all day. We're going to make sure that we designate worry times. So this way families can support people in both learning the language of critically examining thoughts and so the person will feel that they are joined by the people who love them. Dialectical behavior therapy is similarly a very important intervention to talk about. Let's just see about this slide here. I have a little slide malfunction. Dialectical behavior therapy, as you know, was invented by Marshall Linehan. Marshall Linehan won the NAMI Research Award about five years ago for the brilliance of integrating radical acceptance and devotion to change. The dialectic, if you will, of two different sides of oneself. When I refer somebody for dialectical behavior therapy, I share with them that their diagnosis, whether it's of traumatic dysregulation or borderline personality disorder, is a hopeful diagnosis. That there are treatments that have been well shown to work and the informed consent or shared decision-making part is, this is hard work and I want you to know you'll be doing homework. You'll be going to groups. The therapist will ask you to commit to staying alive for a year. You have to rehearse coping strategies. You have to over and over learn to attend to the biological dysregulation. Dr. Linehan has suggested that borderline personality disorder be renamed dysregulation disorder, which I think is actually would be an upgrade because it defines the actual problem. That's radical acceptance. You have a dysregulation problem. You're devoted to change, but you must accept the dysregulation that will come in future states. I also share with people that finding a DBT therapist is difficult. One of Marsha Linehan's greatest concerns in life, she shared with me after her work of genius in developing this and studying it, and she's a rigorous researcher. She really takes the time to do the work. She says, you know, who is a DBT therapist? So she created a website behavioraltech.org. It's my favorite resource because I tell people about a potentially life-saving therapy, how hard they're going to have to work, and then of course I get alongside them, Les Haven style, as we together try to find them a DBT therapist. So again, this is if they want to do the work, if they want to engage in a process which is likely to help them develop alternative coping strategies. It's a lot of work. It's really a lot of work. DBT is the psychotherapy intervention par excellence for borderline personality disorder. There are other models, and I don't dismiss them, but I think this is an important and valuable one. Can the individual and the family learn the language to support and promote recovery, right? So, you know, the words dysregulation, coping, tools. Are you going through your toolkit? Are you going through your coping strategies? When I was involved as the state medical director in an effort to reduce restraint among children and adolescents in private hospitals, I found this very valuable to learn the language of the person who is dysregulated. A lot of adolescents in psychiatric hospitals are quite dysregulated, and we were able to reduce restraints by 70%. We wrote a paper in the Journal of Child and Adolescent Psychiatry, Janice Lebel, L-E-B-L, is the first author. This is in 2003, way back in the day. The idea was learn the shared language of what stimulates and what calms a person that the nurses, the families, and the patients all learn. One of the things about restraint is it's extremely paternalistic. I'm not a fan of restraints, but it also doesn't teach anyone anything. So again, it represents kind of the sine qua non of inpatient paternalism. I'm not sure restraint can be eliminated, but I think it can be dramatically reduced if people learn the shared language, both the family, the therapist, and most importantly, the patient, so that the patient uses coping skills, which are rooted in DBT. We're not doing DBT at all these hospitals, but the principles of knowing what upsets you, what calms you, rehearsing is really valuable. So DBT is a lot for people to take on, and it may well save their lives. If you can find a clinician, this is the conversation that I have with people. It's hard work. It's going to take a lot for you. There's very good evidence that you may come out a much happier person. Close the peen. Close the peen, as you know, is an underutilized antipsychotic, which to me, it's still remarkable to me that the NAMI conventions, every year, except for last year when we had a virtual convention, someone comes up to me and gives me the close the peen hug. What is the close the peen hug, you might ask? Why would anybody hug a psychiatrist? We're not even supposed to touch patients. Well, these aren't my patients, right? NAMI is a mission. NAMI is a whole life of trying to help people, and I mentioned close the peen in virtually every talk I give. As you know, close the peen has an FDA approval for treatment-resistant psychosis, which means if you failed two meds, close the peen is the only of many antipsychotics, as that indication. It's the only antipsychotic which has been shown to reduce the outcome of suicide in people with schizophrenia and schizoaffective disorder, which is typically a big concern for family members and often for the individual who doesn't like the feeling of feeling out of control. Risks and benefit conversations, if a person has in fact failed two real trials of medications, adequate dose and adequate duration, I really have this conversation. I frame this as psychiatric chemotherapy, and the reason I do is for people who have cancer, as I once had, I was given the most intensive and difficult treatment in order to preserve my life. I agreed to said treatment, I got sick as hell, and here I am 32 years later giving you this little talk, and so chemotherapy made a big difference for me. Now, schizophrenia, schizoaffective disorder, the person's unlikely to be able to rid their lives of clozapine, but a whole subset of people find a dramatic improvement in their symptoms and in their experience of living. Now, I can't predict who it is, and I share with them, I have no idea if this is going to help you. There's a lot of research going on in genetics in the brain. The truth is we don't. So weight gain, the risk of flash diabetes, myocarditis, there are actual risks with clozapine which are real, and I don't undersell them. Like psychiatric chemotherapy, you're going to have the equivalent of hair loss and vomiting, and you're going to feel like heck in many cases. However, the evidence is quite clear that this is better than all the other antipsychotics, and I'm honest, we don't know why. So the individual and the family look out for things like drooling, like portion control, because if your sense of satiety has been removed by clozapine, you will simply keep eating, and that's important not to do. And so I'm a big fan of clozapine. There's very good evidence this is grossly underutilized. It is more work for the psychiatrist. I freely admit that. There's a REM system. It involves a pharmacist. You have to get a white count in order to do it. The agranulocytosis appears to be worse in the first six months. I've only had two patients in my career that I had to stop clozapine because of a low white count, and that is a heartbreaking situation because the re-challenge on clozapine can't really happen, and that medicine helped both of those patients, and you're left with this very humbling reality that you were left with the next best tools, but you actually gave them the chemotherapy, and the chemotherapy worked. So ketamine and esketamine is a great story of the National Institute of Mental Health. As our moderator, can we jump through the next slide just we have a quick time for question-answers? Oh, sorry. Ketamine, as you know, is a horse anesthetic that has been shown to be helpful for depression. Esketamine is the mirror version of ketamine that has been shown to be helpful in treatment-resistant depression. You have to do insurance advocacy. Some of these medicines are expensive. Long-acting injectables is the same conversation. If you're not complying with treatment, you're not adhering to treatment. Let's talk about ways to keep you out of the hospital. This is something to consider. Interesting that in Europe, LAIs are more acceptable than in America. In ECT, I would like to mention this because it has been life-saving to some patients. I do lay out the fact that it's not what Jack Nicholson went through, and there are real side effects. People report memory problems with ECT. I think it's important not to undersell them. I think it's just important to be honest. TMS, repetitive transmitting magnetic stimulation, has very few side effects or memory. I got a treatment of TMS, which is a different story because I wanted to learn what it was like for the individual. It feels like a bee sting on your scalp. I was impressed that when I talked to the techs at the RTMS clinic at Beth Israel Deaconess, they reported that the waiting rooms were full. The patients always come back. Of course, at my mental health center, the no-show rate was quite substantial. I'm going to list what I've already said. It's right there. Now I'm going to turn back to John to engage in questions. I'm sorry I went on a little long, but obviously this is a topic of interest to me. Thank you for your patience with me. It's so much wonderful information. We'll just jump to our download app slide. I wonder if we can bring the slides back. Perfect, this one. Before we shift to question and answer, I want to take a moment and let you know that the SMI Advisor app is accessible from your mobile device. You can use the SMI Advisor app to access resources, education, and upcoming events. You can complete mental health operating scales and even submit questions to our SMI Advisor experts. You can download the app now at smiadvisor.org. If you have any questions, you can add them to the chat as well. We're going to do only one quick question. There's other ones we'll follow up afterwards. Dr. Duckworth, if someone's listening and wants to connect family members or patients or people who've experienced a NAMI, what is the best way to connect to NAMI? Is it a local chapter? Is it a website? Thank you for asking that question. I love that question. Go to NAMI.org and then it'll say, you know, where are you looking? You write in Louisville, Kentucky, and it turns out there's a NAMI Louisville. Then it's a fantastic organization. So the national website is one way, but also virtually every state, almost every state, has a state NAMI. So if here in Massachusetts, I would email NAMIMath, right? There are remarkable organizations in every state. I want to thank you for that because your patients are going to benefit from this free resource where they don't feel alone, but are rather joined by thousands of other people grappling with the same challenges. So and then if people are asking to follow up on something you've said, I know you put your, the PDF is here, what is the best way that people can recap and learn about all this information? Well, if you want, you can email me. My name is Ken and I work for NAMI and I'm Ken at NAMI.org. Now I will ask you to be patient with me, because as you might imagine, because I'm free to give out my email address, I attract emails. But I will do my best to get back to you. That's one idea. Look at the Dartmouth information on shared decision-making, while it's not mental health specific, and check out the SMI Advisor and APA Crisis Planning app. It's very interesting. Psychiatric Advanced Directives do not have a legal standing in every state, but if you check out the SMI SAMHSA APA Crisis Plan app, which is available on the Apple Store, you just go right into where you get your podcasts or words with friends or whatever it is you do, and you write in, my mental health crisis, it'll come right up. This is how people can do a Psychiatric Advanced Directive, how they can say what they want and care when their future ill state. It's a great resource. So Dartmouth, the APA and SAMHSA app on crisis planning, and if those aren't enough, send me an email and I'll do my best to get back to you with your patience. And I'm gonna have one super quick question. You kind of talked about the Turking video. How do you spell that name so people can look up and kind of find those? Turkington, T-U-R-K-I-N-G-D-O-N. Turkington and a different man named Kingdon, K-I-N-G-D-O-N. And they're both Brits. They both have established cognitive behavior therapy for psychosis as a benefit in the National Health Service. And Kate Hardy at Stanford is a champion of this in America. So take a look at Kate's work at Stanford. But Turkington and Kingdon are absolutely brilliant. I went to an APA meeting solely to see them because I was so impressed with them. And I invited them to come to NAMI. And they flew across the pond and were absolutely brilliant and engaging. If you ever get a chance to see their work, you learn so much from them. And I'm sorry to say America has been slow to bring cognitive behavior therapy for psychosis to the fore. That's perfect information. So we'll jump to the next slide on consults. So I know we couldn't answer all questions. Do you have any follow-up questions on this topic or any related to evidence-based care for SMI? Our clinical experts are available now for online consultations. Any mental health clinician can submit a question or receive a response from one of our SMI experts. These consultations are free and confidential. SMI Advisor is really just one of many SMSA initiatives that are designed to help clinicians implement evidence-based care. We encourage you to explore the resources available on the Mental Health Addiction Prevention TTCs, as well as the National Center for Excellence of Eating Disorders and Suicide Prevention Resource Center. These initiatives cover a broad range of topics from school-based mental health through the opiate epidemic. Thank you for joining us. Thank you to our guest, Dr. Duckworth, for teaching us so much. And thank you to everyone for tuning in. Until next time. I just want to say thank you for the work you're doing on behalf of people with serious mental illness. There's so much need and we're all so grateful for what you're doing. Thank you. No, thank you. And clearly for all our listeners, too, in this profession, I think we're all working towards the same goal. So thank you to everyone.

Dr. Ken Duckworth

NAMI

shared decision-making

CBT

DBT

Clozapine

ketamine

ECT

TMS

treatment process