Hello, and welcome. I'm Amy Cohen, a member of the Clinical Expert Team with SMI Advisor and an Associate Research Professor in UCLA's Department of Psychiatry and Biobehavioral Science. I'm pleased that you're joining us for today's SMI Advisor webinar, Psychiatric Advanced Direction, a compelling tool to support crisis care. 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 the answers you need to care for your patients. Today's webinar is hosted in collaboration with the Mental Health Technology Transfer Center Network. Funded by SAMHSA, the MHTTC network includes 10 regional centers, a National American Indian and Alaskan Native Center, a National Hispanic and Latino Center, and a Network Coordinating Office. Our collaborative network supports research development and dissemination, training and technical assistance, and workforce development for the mental health field. To connect with an MHTTC in your region, visit mhttcnetwork.org and click on Your MHTTC. And now I'd like to introduce you to the faculty for today's webinar, Phoebe Smith and Dr. Marvin Schwartz. Phoebe Smith is Director of Mental Health and Project Coordinator for the Crisis Navigation Project at Southern Regional AHEC. Previously, she worked for 21 years at the University of North Carolina at Chapel Hill in the Department of Psychiatry and the School for Social Work. Her clinical practice focused on persons living with psychotic disorders and included psychotherapy, family therapy, and clinical case management. She was the NASW North Carolina Social Worker of the Year in 2012 and won the Bryan Public Service Award in 2015. Dr. Marvin Schwartz is Professor and Head of the Division of Social and Community Psychiatry, Director of the Duke AHEC Program, and Director of the National Resource Center on Psychiatric Advance Directives. Dr. Schwartz has been extensively involved in research and policy issues related to the organization and care of mentally ill individuals at the state and national level. He is currently a co-investigator of studies of the effectiveness of drug courts, the effectiveness of gun laws in reducing gun-related deaths, law enforcement diversion programs, and implementation of psychiatric advance directives. He was a recipient of the 2011 American Public Health Association's Carl Taub Award, and the 2012 APA Senior Scholar Health Services Research Award for career contribution to mental health services research, and the 2015 Isaac Ray Award from the APA for career contribution to forensic psychiatry. Marvin and Bebe, thank you so much for leading today's webinar. Thank you. It's good to be here. Thank you. And this is Marvin. Marvin Schwartz, I have no disclosures to declare. And this is Bebe Smith, and I also have no conflicts of interest to declare. Okay. Well, why don't we get started? This is Marvin Schwartz, and welcome. We're really delighted to have you on this important topic. Our objectives here are to list the benefits of psychiatric advance directives. I may use the word PADS just to shorten it up. They're called various things. Summarize the origins and rationales for PADS, and discuss approaches to overcoming barriers to implementation of psychiatric advance directives. And Bebe will have a particular focus on that that I think will be illuminating. Let's jump in with a case to illustrate some of the issues so that it will be clear how these work and what the benefits are. So Ms. Jones is picked up by the police after she's found wandering in mute, wearing sandals and a T-shirt in cold weather. They transport her to a crisis facility. In the crisis facility's electronic records, there's an indication that she has a psychiatric advance directive. And it gives information about her history and medication preferences. She also has a healthcare power of attorney, and her sister is her healthcare agent. The psychiatrist examines Ms. Jones and finds that she's currently lacking capacity based on her inability to attend to his questions, and her statements do not seem to be related to reality. The psychiatrist documents in the medical record that Ms. Jones is currently incapacitated, and he then calls her sister who gives him further information about what Ms. Jones would want in terms of treatment. The sister comes into the crisis facility and signs paperwork allowing Ms. Jones to be admitted voluntarily to the hospital. Ms. Jones is much relieved by the presence of her sister, whom she trusts to speak for her and calmly agrees to the hospitalization. So let's get into what happened here. What are these psychiatric advance directives, and how did they help in this situation? So they are legal documents that allow persons with a sound mind to give future consent or to refuse psychiatric treatment. That piece, the specific instructions, are called advance instructions. The second piece is so-called healthcare power of attorney. All different things in different states, but that's a generic term for them, and that allows one to authorize another person to make future decisions about mental healthcare on behalf of the mentally ill person if they become incapacitated. So what are some of the benefits this has in this case? Well, as we saw, it authorized permission to consult with the family in the role of healthcare agent. So it gave explicit permission to call the sister and to speak with her. It authorized permission to speak with other providers. So it opened up the communication channels both with the family and outpatient providers. It provided a history and a crisis plan via the advance instruction. So one of the great advantages of these documents are that they sort of give a synopsis of one's medical history. So you can put down in there very key pieces of information that would be informative to providers, particularly if they don't have any records of past treatment. It authorizes the voluntary admission in this case by the healthcare agent. So instead of needing to be involuntarily committed because the patient was not able to consent, Mrs. Jones was not in a position to give competent consent, it permitted that admission to still be voluntary and thereby avoided involuntary admission. So what are the goals of advance directives? Well, they are to ensure patients are treated according to their wishes, even when they cannot speak for themselves. So even at times when they're incapacitated or very sick, it still gives voice to what they would like for treatment. And when unable to communicate coherently, provides a mechanism for exchange of clinical information, which is so vital in this case and many other cases, where clinicians, busy clinicians need to get up to speed in a hurry, and also permits a mechanism for consent or refusal of treatment. And then the other piece of this, it gives a real live person in the form of the healthcare agent to become a proxy decision maker and to speak for the patient. So we realize in advanced directives that there are situations that might come up that aren't covered by a written document. And so a very important part of the role of a healthcare agent is to fill in the gaps based on his or her understanding of the patient and the patient's preferences. So what are the legal origins? Where did these things come from? Well, they really go back to the 1990s and the now landmark Cruzanne versus the Director of the Missouri Department of Health Supreme Court decision. In that case, Nancy Cruzanne was in a persistent vegetative state and her parents wished to disconnect her from life support. The state and hospital weren't comfortable with their authority to do that. And so that case eventually went to the Supreme Court. The Supreme Court affirmed that, yes, a patient has a right to self-direction and to decline or accept treatment, but there needed to be some clear and convincing evidence of a patient's wishes to withdraw such life-sustaining medical treatment. And so in the Cruzanne decision, what the Supreme Court said is, we can do this. This is something that hospitals can do or providers can do, but there needs to be clear documentation of the prior wishes of the patient. As a result, Congress then acted very quickly and passed the Patient Self-Determination Act of 1991. That act directs hospitals and other healthcare facilities to implement medical advance directives and in effect end-of-life living wills and requires hospitals receiving federal funds, one to ask the patient if he or she has an advance directive on admission, document advance directives and follow them, and have written policies for implementing advance directives in the facilities. Mental health advocates seeing this development began to think about how to adapt advance directives for mental health purposes with the hopes of strengthening patient self-determination and reducing the use of involuntary commitment, both inpatient and out. So pads differ a little bit from end-of-life advance directives in that they are generally self-finding and the idea is there was a recognition that all too often patients, when they're very sick, aren't able to make good decisions and later have things done to them, such as involuntary treatment, that they would not have chosen had they had their, quote, wits about them. So the idea of the self-finding pad is that once a patient is deemed incapacitated, the patient cannot change his or her mind about the treatment preferences that were previously documented. So in the late 1990s, North Carolina, where Bibi and I are from, it was one of the states to pass a pad statute, eventually separating the provision of the advance instruction and the healthcare power into two separate pieces of statute. Since then, there has been great interest in pads across states and we now have 27 states that have passed pad legislation. That includes Nevada. So there was a survey that I and my colleagues conducted in 2004 with outpatients in facilities in these cities, Chicago, Durham, San Francisco, Tampa, and Worcester, Massachusetts, and we said, do you have, I'm sorry, do you have a mental health advance instruction or have you appointed a healthcare agent? We asked the consumers this, and roughly 4 to 13% said, yes, they had one. We then asked, if someone were to help you complete a psychiatric advance directive, when do you want one? And what you see is that roughly two-thirds to three-quarters of these patients said, yeah, if someone would help me, I really would like one. And that demonstrates that there's a big latent demand out there for psychiatric advance directives and that one of the key barriers is the fact that people need assistance and they don't have assistance readily available. So why is this important? Well, as we said, it allows families and proxies to speak directly with providers during a crisis. It allows families and proxies, so it's not always a family member, as you know, it could be a significant other, it could be a friend who a person appoints as a healthcare agent. So it allows these individuals to help make decisions during crises, which we think is very important because it's important to have someone who comes in and assists in the crisis and also can fill in the gaps and speak to the preferences of the person during the crisis. It supports patient autonomy and empowerment in mental health care because this allows the patient's preferences to be honored even when they can't represent themselves. And that's a key aspect of this is that it preserves and provides the continuity of care even when the patient's not in a position to speak for themselves. As a result, it may reduce involuntary treatment because consent is available and provisions to address the patient's needs are clearly documented. And as a result, may improve continuity of care because the history and key facts about the patient are available in the advanced instruction. So things like, should I get sick again? These are the medications I would want. These are the medications that have caused problems in the past that I wouldn't want. These are the hospitals I would like to be admitted to. These are the ones I would not. Things like that that are important pieces of information. They're also very important because psychiatric advanced directives are a condition of participation in Medicaid and Medicare for treatment facilities. We see that as documented in the federal code of regulations in that the CMS, the Center for Medicare and Medicaid Services, reminded providers who accept federal funds, which is just about all providers who accept Medicaid and Medicare, that they need to honor psychiatric advanced directives. What they reminded these facilities in this note was that psychiatric advanced directives are an important aspect of patient rights and that patients have a right to make decisions regarding, it says here on the right, his or her care and to formulate advanced directives. And that patients have a right to a family member or representative of his or her choice to be notified and to be present. So this was a very important message to facilities to say to them that these things are real, they need to be respected, and the fact that they come under the Patient Self-Determination Act. This year, in addition, CMS also made this a quality measure as part of discharge planning for facilities. So, as I said, there are two parts to advanced directives, to psychiatric advanced directives. There's the advanced instructions, and those are similar to living will, and they allow one to document wishes, consent, or refusal of future care. So these are, in effect, empty vessels whereby a person can specify whatever they would like someone to know about them prior to a crisis or prior to a period when they can't speak for themselves. And it can be specific consent or refusal of types of care, but it also can be just helpful information, such as things like, you know, if I get sick, these are the things that calm me or are helpful, these are the approaches that are most helpful, or even things that really don't have to do with consent or refusal of treatment such as, well, if I get sick, can you contact my family and make sure they take care of my kids or they, you know, come in and check my apartment? So things that may not have to do directly with care, psychiatric care, but may be very important to a person's well-being, those can be put in the record too. So these are, in effect, empty vessels where someone can fill in with things that are important. Now the other piece is this health care prof attorney, which appoints the health care proxy. So in this case, it appoints another person to make decisions during a crisis, and that person can be designated to have limited or broad powers. In North Carolina, you can have either or both. In some states, the process involves only one document. So this varies from state to state, but the structure is pretty consistent across states. So the instructional directive usually permits the individual to plan for, consent to, or refuse these things like hospital admission, medications, even electroconvulsive treatment or other treatments, and takes effect when the individual loses the ability to make decisions that is incapable. And you can make the advanced instruction, and this is the example from North Carolina, but it's very similar in most states, but you should check your state if you're interested in doing one or helping someone with it. So any individual of sound mind can make an advanced instruction, so you can't do it when you are incompetent or incapacitated. And then it has to be signed in the presence of two witnesses. They can't be relatives, they can't be a caretaker, they can't be someone operating a facility where a client's a patient. Then they need to be notarized and presented to the doctor or other mental health treatment provider. What is the obligation of the doctor or the staff when they receive an advanced directive? Well, they should make it part of the medical record. They should act in accordance with the directive when the patient's determined to be incapable, so during a period of incapacity, and they are permitted to notify other providers to follow the advanced instruction. So what does this term incapable mean? Well, this is specific to North Carolina, this definition, but the definition of incapacity or being incapable is similar across states. And in North Carolina, it states, in the opinion of a physician or eligible psychologist, the person currently lacks sufficient understanding or capacity to make and communicate mental health treatment decisions. So in common parlance, the person either just can't speak, can't speak coherently, or can't make coherent decisions. Some clinicians ask, well, do I always need to honor these things? What if the instructions don't seem to make sense? So North Carolina, at least, and I think most other states, give broad discretion to providers, preferential to providers, so that they don't feel they're being impinged upon by the instruction. So in North Carolina, the clinician can disregard the instructions if they're not consistent with generally accepted community practice standards. So, for example, if a patient requested a medication that was inappropriate, they wouldn't be required to follow that. When a treatment request is not feasible, so say a person requests to go to a hospital that's full, has no beds, then the provider would not need to follow it. Also, the clinician does not have to follow it when treatment requests would interfere with some type of an emergency, involuntary commitment, or conflicts with other laws. So the healthcare power of attorney, as we said, allows the person to appoint someone to speak for them when they're incapable, but not when they're incompetent there. That should say not when they're incompetent. When someone's incompetent, that's a judicial determination, and in that case, the person would have a guardian. It can be combined with an instructional directive, although there are different forms for this in North Carolina. And any adult, when of sound mind or when capable, may execute it. Next. A healthcare power of attorney, that role can be filled by any competent adult, 18 or older. It can't be someone who's providing care for the consumer. And we really advise that multiple individuals are named in it so that if the first person who's identified to be the healthcare agent isn't available, then someone else can step in to fill that function. So what powers does the healthcare power of attorney have? And this is, in some ways, kind of remarkable. It really, most states will say that that healthcare power of attorney, or the proxy or the healthcare agent, can make whatever treatment decisions the patient could make for themselves, if well, unless the patient has limited the authority of the healthcare power of attorney. So say the patient says, well, I want my mother to make all decisions if I'm incapacitated. But under no conditions would I want to go to this hospital. And so in doing that, they would limit the authority, he or she would be limiting the authority of the healthcare power of attorney to make that specific decision. And so they can make any other decision that isn't limited in the document. So I think we've made the case here that these are good things. These are things that we would want patients who are at risk of incapacity to have. So the question we struggle with and we try to address is, so why aren't these in the mainstream? Why doesn't everybody have one? Why don't we offer them to all patients? Well one reason is that I think the information about this just hasn't gotten out there, and not everyone's been sold on the benefit of PADS. One is I think a lack of focus advocacy for them because there's so many other advocacy issues out there that this one might escape people's attention. Some of the interest might be diluted in that only 27 states now have these specific laws, although the remaining states still allow you to write this kind of directive under the medical advance directive statutes. Some key barriers are advance directives are difficult to complete for some patients. They come across as legalistic, they can be confusing, there's a lot of thought that goes into it. And as a result, we think that many people need help in completing advance directives and that that help may not be forthcoming. In addition, health systems and providers need more guidance in putting PADS into practice. They need education, they need to put the assessment of capacity into routine practice. And so that's something we're trying to address in the project that Bibi's going to discuss, the crisis navigation project in North Carolina, which is an example of a community initiative in which we are trying to establish networks of community volunteers that can assist in completing advance directives. And now I'll turn it over to Bibi Smith, who's the director of this project to talk about how this is being conducted. Yeah, so I am working with the crisis navigation project in North Carolina. And this is a grant funded project that we were funded by the Duke Endowment, which is a foundation in North Carolina that funds a lot of healthcare initiatives. And it's a collaboration between Southern Regional AHEC, where I work, with Duke University, with Marvin and a research team there that's done quite a lot of research on how can we implement and kind of spread the word about psychiatric advance directives more broadly. And then NAMI North Carolina is also a key partner in this initiative. And that's just a screenshot of our website. If you want to go there, the address is just crisisnavigationproject.org. And that's got some resource information and more information about our project. We're based in, we're doing this project primarily in four counties in North Carolina, Mecklenburg County, where Charlotte, a major urban center is, Durham County, which is where Marvin and I both are in North Carolina and kind of university, Duke University is based in Durham. And then Cumberland County, where Fayetteville is, that's where Southern Regional AHEC is based and Wake County, which is where Raleigh is. So those are the main places that we're working, although we're doing some work kind of broadly across the state. And what we have done is kind of develop a number of different educational strategies. And one of the primary ones that we're doing is that we developed an educational blended learning course for people who were interested in learning how to help people facilitate psychiatric advance directives. And initially we were thinking that NAMI volunteers would be good to go through this training, but we've actually broadened our sort of target groups to include clinicians and peer support specialists, and then some community volunteers as well. So what we've developed and what we were recruiting people to go through the training for is a blended learning course. The first three hours is an online course that we've developed through our learning management system that people can sort of take on their own time. And then we follow that up with a skills workshop. So in this online course, people get introduced to the concepts behind advanced care planning and mental health, and they learn about psychiatric advance directives. They get some sort of meticulous instruction on what the particular legal forms are in North Carolina and how to help someone fill them out, and then some principles around crisis planning. And then we follow that up with a skills workshop. Again, this is a three-hour skills workshop. This is a group from Charlotte, North Carolina, that went through the training with us. And in the skills workshop, we actually give people kind of hands-on experience using the forms and doing mock facilitation. So that's what you're seeing here. And in this particular class, which was in Charlotte, we do have peer support specialists and clinicians who went through that round. And we've had some kind of remarkable community engagement with our initiative in Charlotte. We also kind of learned pretty early on that with the education we were doing that it wasn't simply enough to train facilitators and to people who could help people create the psychiatric advance directives. We also kind of learned that we needed to increase knowledge about PADS more generally with people who might be interested in them. So we've, in collaboration with our partners in Charlotte, we developed a workshop that is targeted to people who might want to create a psychiatric advance directive. And that provides some kind of general information and an overview of what they are, and then allows the person the opportunity to be matched with a trained facilitator so that if they want to create one, they can do that kind of in the moment. That's kind of an afternoon workshop. And then we have a notary public on site, and it kind of gets around some of the challenges with getting people to do the witnessing. So that's sort of one strategy that has seemed to work for us. We've also seen some clinicians, particularly outpatient psychotherapists, who have been interested in adding PADS facilitation into the work that they do with their clients. And again, a healthcare provider can help someone create one, they just can't do the witnessing and the laws here in North Carolina. So we're trying to do just sort of a broad level of all kinds of educational things. So Marvin and I go out and do, we've done overviews on psychiatric advance directives in each of the counties that we've worked in. We've done kind of introductory trainings for some hospitals and health systems for community groups and gone out and done conferences across North Carolina, done presentations on psychiatric advance directives, really trying to increase awareness and knowledge about them and also to increase interest and to kind of get some other people in the state kind of to be champions around using these tools. Some of the people that we found as our kind of greatest cheerleaders for this and champions have been peer support specialists, people with lived experience. We're also trying to figure out ways to sustain. So we're working on a grant-funded project. One of the challenges with grants is that they're time limited. So if we get some momentum going on this, how do we keep it going in the future? We developed a train-the-trainer for our facilitation training, and this is our first group of trainers who are ready to go out and train others in our PAD facilitation strategies. This group, I particularly love this photo because it represents, there's some clinicians in this group, there's some family members, and they're peer support specialists. And if you look closely back in the back, we do have one man who went through our train-the-trainer. So it's a nice picture of the community and kind of the diverse groups that are interested in promoting psychiatric advance directives. A lot of the peer support specialists that we've worked with really see how these can be used as a tool of empowerment for the person who lives with mental illness. And then our family members have also seen it as a way to be kind of clearly and instrumentally involved in their loved one's care. And particularly for family members who have that kind of good relationship where they are supporting their family member's wishes, that's an important kind of thing that makes families feel a little bit better about what would happen in a crisis. I do wanna give a shout-out to a couple of people in this photo. There's a NAMI person, Judy Reiner, who's been kind of our on-the-ground partner in Mecklenburg County and in Charlotte. Our project isn't successful without those kinds of people who are helping us spread the word. And then Shereen Carrico, she's got the cape on, the long hair, is a peer support specialist who's also been a great champion for our initiative. In March of 2018, Dr. Anita Everett, the current director of the Center for Mental Health Services at SAMHSA, called an expert panel meeting on psychiatric advance directives. Marvin and I attended that meeting along with my boss, Lalisa Hewitt-Robinson. And out of that meeting, she asked me to create a guide to psychiatric advance directives, which is available now as a national resource. We did use some of our experiences in Charlotte to inform this guide. And one of the things that I appreciated is that we were able to use some of the input from the people who worked with us. So just as an example, one of the people who was a partner in Charlotte had said this in the guide, The utilization of PADS puts power in the hands of its author, which is something that has often been elusive to the population that live with mental illness. It's empowering for a person to know that even during a psychiatric crisis, their wishes will be considered. I consider PADS to be an essential tool and encourage all clients with a history of psychiatric illness to have one in place as we strive to build a true recovery model for care. That was a quote from Marcus Boyd, who was a mental health counselor who works in a forensic setting in Mecklenburg County and is one of our partners in Charlotte. So that guide is available on the web through SAMHSA. You can see the link there on the slide. And I think this gets me to the end of my section. But I might turn that back over to our folks at the SMI Advisor.

Amy Cohen

SMI Advisor

Psychiatric Advanced Directions

Crisis care

Phoebe Smith

Marvin Schwartz

Psychiatric advance directives