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Shared Decision Making: Activation of Patient/Prov ...
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Hello and welcome. I'm Tristan Grindow, Deputy Medical Director and Director of Education for the American Psychiatric Association. I'm pleased that you are joining us for today's SMI Advisor webinar, Shared Decision Making, Activation of Patient Provider Teams. 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. Now, I'd like to introduce you to today's faculty, Patrick Hendry. Patrick is Vice President of Peer Advocacy Supports and Services for Mental Health America and is a core member of the Clinical Expert Team for SMI Advisor. He provides national advocacy and develops new services and trainings for peers within the behavioral health system. Patrick has worked as an advocate and initiator of peer-run services for 27 years in a variety of leadership roles, including former Director of NCSTAC, a consultant for the National Council for Behavioral Health, the University of South Florida, SAMHSA, NASMHPD, among many other agencies. Patrick, thank you for leading today's webinar. Thanks, Tristan. I'd like to thank everybody for attending. I'd like to say that I have nothing to disclose as far as conflicts of interest or other relationships. So, we're going to talk today about Shared Decision Making, and our objectives with this webinar are to kind of define a basic format for this practice, identify the core components of making effective Shared Decision Making teams, and then locate and utilize tools that are available for communication with an activation of patients towards self-management. Shared Decision Making is really at the intersection between evidence-based medicine and the Shared Decision Making process itself. Evidence-based medicine should begin and end with person-centered services, finding and appraising evidence and attempting a decision that allows the person receiving services values and circumstances. This can be difficult, and evidence-based medicine is frequently criticized as ignoring individuals' values and preferences. But Shared Decision Making is when the clinician and the individual receiving services work together to make health decisions, and it's a process of discussing choices and options and benefits and potential barriers or harms, considering the individual's values and preferences and their own circumstances. Without Shared Decision Making, evidence-based medicine can turn into evidence tyranny. I love that quote. And without Shared Decision Making, evidence may poorly translate into practice and improved outcomes. For Shared Decision Making to be as effective as possible, there must be discussion that includes basic research evidence, otherwise the decisions the person makes for themselves may not be based on reliable estimates of risk and benefits. It often takes great skill to gain the trust of people you serve, motivate them and follow through on treatment and keep them engaged until the correct treatment is found. So one tool that really has become very, very valuable in behavioral health, though it's not as widely used as we would like it to be, is the tool of Shared Decision Making. It's still, even though it's been around for 25 years, it's still not uncommon for clinical staff, particularly doctors, to think of it as kind of a fad, as something that's passing and may or may not be effective. So as a clinician, you rely on both your scientific knowledge and your people skills. Bringing the patient into the decision-making process was described as being a modern doctor as early as 1959. Doctors who exhibited a more modern approach towards having the patient involved in decision making about their own health care were also found to be more likely to adopt new clinical practices as they emerged. The doctor shouldn't be mystical. You know, many of us grew up in a time, you know, those of us who are not clinicians, where the doctor was considered to be the final authority. The doctor should consider the patient as an equal, as intelligent as himself, and give the patient a chance to help the doctor to try to figure out the problems that they're facing together. So it really does take a team. And from the point of view of the individual receiving the services, you and your doctor or other clinician that you're working with, deciding together to make the best choices for your care. As somebody receiving services from a mental health provider, you depend on them to treat your mental health condition. But many of us don't really realize that our provider or our psychiatrist or other clinician also depends on us to provide them with knowledge and our experience about our own condition and what works for us and what doesn't. So we know that when people work together as a team between the provider and the individual receiving services, the outcomes really pay off. For one thing, for the individual, it gives you a greater sense of control. And this is a major issue often for people being treated for mental illness, is feeling that they have no control in their life or in their treatment. It also gives you a strong commitment to follow through on treatment decisions because you've been a partner in making those decisions. You and your doctor or clinician are on the same team. So when you work together to find a treatment that's right for you, then you feel ownership of that treatment and you're far more likely to continue with it. So this is a benefit both to the individual in treatment, but it's also a benefit to the clinician because now you see that people are staying with their treatment, helping you make decisions as they go along. And by staying with the treatment and owning the treatment, self-managing with treatment, they're far more likely to have a better outcome in the long term. The principles behind shared decision making are really well known, but there's not been a lot of guidance about really how to approach it in a clinical practice. The key to the process is a positive trusting relationship. And when you think about that, that's frequently difficult to establish when you first begin to work with an individual with serious mental illness. So that first part of the relationship is really about getting to know each other, build trust, and then to begin to work together where information is shared and the individual is supported by the clinician as being an equal partner. The process is really three steps. The first part is informing the individual that they have choices. Typically people, particularly people who have been institutionalized or recently discharged from a hospitalization, feel that their choices are very limited. And if you ask them, for instance, what their goals might be, initially their goals might be to stay out of the hospital or to stay on their meds. It really helps when the treating clinician broadens their horizons and lets them know that there are other choices in the world available to them. And then they describe what those options are and they go through a real process of informing them about the options and the potential barriers. And then they begin a process of what we refer to as decision talk where the individual and the physician or clinician explores the possibilities and makes decisions about how they're going to proceed forward. So how does it work? As a process, it begins with mutual education. The individual meeting the physician for the first time, the clinician, maybe a therapist, maybe a practicing psychiatrist, informs the individual about their symptoms and complaints and other health conditions and their personal goals and preferences. And again, as I said before, sometimes that's a difficult process for an individual to succeed at early on in the decision-making process because, again, their goals may be relatively narrow. The doctor educates the individual on their diagnosis, the treatment options, and the barriers and benefits of each option. So it's a process that is informed by both parties to reach a decision-making place. So once you get into that process, exploration begins. And so this is where you begin to discuss the individual's reactions to the options that are being presented to them and any concerns that they might have. When they voice a concern or a question, the clinician provides additional information. They make recommendations based on the person's individual input. Finally, the clinician and the individual arrive at a mutually agreed-upon course of action, and then they begin to figure out the next steps to be taken. Decisions are based on what matters most and on informed preferences. And sometimes the clinical point of view and a person's informed preferences may not totally come together. And we have to understand that if a person does not agree with the decisions being made on their behalf, they're far less likely to continue on in that course of treatment. And so we really sometimes have to modify as clinicians. We have to modify our point of view and try and find creative solutions to problems that we're facing. So there's been a lot of research done over the years on shared decision-making. Shared decision-making exists throughout medicine. It's relatively new in behavioral health care. In 2013, there were over 580 publications with index references to the keywords of shared decision-making. And they show that there's knowledge gained by individuals receiving services, there's increased confidence in their decisions, and more active treatment by the individual, more active participation in the treatment. Actually, in a lot of situations, the individual ends up choosing a more conservative treatment option so they may stick with the original ideas that the clinician came up with. Because of their relationship that they've built, this trusting relationship, they may not feel that they are capable at that moment in time of making critical decisions without really being the guidance of somebody who brings the clinical knowledge. Research has also shown that decision-making tools, like pamphlets and videos, computerized tools and apps, reduce the proportion of people who are undecided about treatment, and they appear to have a positive effect on the patient-clinician communication process. Shared decision-making also allows the clinician to work with the person, but they also face several challenges that arise when they attempt person-centered care. Different situations call for different communication techniques and patient-centered approaches. When an individual feels ambivalent about making the choices, sometimes this is an opportunity to use the techniques of motivational interviewing in combination with shared decision-making. The basics of motivational interviewing are, of course, to facilitate fully informed, deeply thought out, and internally motivated choices. The question isn't, why is a person motivated to change? It's really, what is a person motivated towards? People go through a lot of different processes to bring about major change in their life, and it's very difficult for some people to feel that they're ready for change. The motivational interviewing process really enters in when a person is in a pre-contemplation stage. If we look at the stages of change, we can see that an individual may begin discussions with the clinician when they're just beginning to think that change may be needed, but they're really not sure about it. Through that discussion process, they think through why change might be necessary, how it might benefit them, what kind of barriers they might face, and they move into a preparation for decision-making stage where they really start to figure out, if I do change, what am I going to have to do, and is that degree of change worth it for me? So a typical condition for an individual might be that they've been on a medication for a long time, and they've had fairly good results for it, but they have had serious side effects that they face. So they begin a discussion. They're reluctant to take the chance that perhaps a new medication won't work as effectively, but at the same time, the side effects, which could be very serious weight gain or other kind of health problems that are brought about through the use of certain medications, or it could be a number of other things. It might be that they're tired or become inactive and sedentary in their actions. So they begin to talk through this process with their treating clinician, and when they finally decide that they're ready to make a change, then they have to take action, and that's where the process really begins. A person makes, starts the action. Now, creating major change in a person's life is just like it is for anybody in life. Sometimes we decide that we're going to make changes. For instance, most people at some point in their life say, my goal is to lose weight, and in order to lose weight, I'm going to have to not eat foods that I really like, or I'm going to have to become much more active, which is difficult for me, but it seems like I really need to do this. So they decide to do it. Frequently people drop out of that process, and so they begin the process over again. What's really necessary for that change is to understand what are the real goals that would motivate a person to take those chances. When you ask a person why do they want to lose weight, they may say, well, because I'll feel better about myself, and I might go out more, but what would be different if you go out more and see people? Well, I might make some friends, and right now I have no friends. So that might be their real motivation is to have friends, and when they reach that point where they understand it, this is where they begin to move into action and then finally into maintenance. If they fall out of the process, it's really just a sequence of starting over. So a clinician should be able to recognize situations where shared decision-making and motivational interviewing are most appropriate, and sometimes both methods are called for. Sometimes situations don't fit just in one box or the other, and medication issues are frequently a place where this happens. So an individual may, well, as I said before, they may like the effects of a medication and have made the decision to choose it, but the side effects are so severe that the individual gets stuck between choices. And this is where a combination of these two tools, helping the person find the true motivation to make change, and also let them know that these changes are something that they will make in partnership with the treating clinician. If we look at it really systematically at the barriers that people report in shared decision-making, and also what facilitates your decision-making, one of the emergent themes related to patient's knowledge and the power imbalance is probably the most important. Knowledge alone is not what drives an effective partnership. There has to be trust, but there also has to be a feeling of equality, because for most people, there's an innate power differential between a clinician and the person receiving services. Providing people with decision-making tools sometimes can help the process, but it still doesn't overcome that feeling of imbalance of power. Decision-making tools might come in a variety of different ways. So there might be brochures or multimedia sites, cards, and as I said before, apps and combinations of things. Sometimes they're something that the clinician can present to the individual during a clinical encounter, and they can work through together, or sometimes they might be something that's sufficient where the person can begin to utilize those tools independently. And this website here, and these slides will be available on the SMI Advisor website, but this site listed here is a place where you can find many tools that are utilized in shared decision-making, but there are many, many other tools available on the internet. So what would be the basis for the feelings of inequality of power? One is age, and another is ethnicity. Sometimes it's level of education. Sometimes it's the nature of their health condition, where a person may have difficulty in making decisions, and so they need extra time, or they need additional assistance in getting to the point where they can begin to do it. Sometimes it's just a matter of adjusting to a new diagnosis, because a lot of times when people are newly diagnosed, the advice towards treatment comes very rapidly, and the person hasn't really had the time necessary to take in all of the information, to understand how they feel about it, to get a perspective on how it's influencing their life, and prepare themselves to participate in a process like shared decision-making, where they work together to gain information, and then decide what their personal preferences are, and then the clinician tries to provide them with the kind of information they'll need to achieve their own identified goals. So some of the things that we can do to overcome these imbalances, the major thing is really open and frank discussion between the two people. And again, for people who are newly diagnosed, and frequently they're diagnosed during a hospitalization, or a crisis stay, short-term hospitalization, and so their life at that point is in turmoil, so building a trusting relationship may be a relatively slow process, but what it does take is an openness and a frank kind of discussion between the two people, and the treating physician or clinician really needs to try to meet the person where they are. And what that means is, if a person is in the middle of a crisis, then the first thing that might be needed to address is how do we stabilize the situation enough to where a person can begin to understand their own preferences, and begin to enter into making choices and making decisions. Key to the whole idea of equality in a treatment relationship is the idea of, one, no decision about me, without me. And this really goes back, it really goes back to the civil rights movement in South Africa with the beginning of, at apartheid, about deciding that people should not, the government should not be making decisions about individuals who had no say in their government, and so this no decision about me process began, but as civil rights began to move throughout the world and become more of a topic of conversation, different groups began to see that civil rights type decisions were important in all kinds of activities. So for instance, a civil rights movement for people with psychiatric diagnoses started in the late 60s as deinstitutionalization began and people began coming back into the community where there was a lack of services, but frequently people were also very damaged by the type of treatment or the type of way they had been treated during their hospitalization, and so they pulled back from treatment and they were angry, and this is when this feeling of nothing about me without me was used as a calling to bring people together so that they could try to build up a sense of power on their own. And by the 1980s, this process had begun and people began to partner with the treatment population to make these kinds of joint decisions. So reviews about shared decision making are coming fast now and we're beginning to see a lot of evidence about its effectiveness and whether or not people were able to reach that kind of feeling of equality in a clinical relationship. But the review of shared decision making of people with severe and serious psychiatric disorders shows that many people are finding it an acceptable practice to engage in and the results in improvement and increased knowledge about their diagnosis and also their increased feeling of involvement in the services that receive are really an important indicator to us that this is something that we need to pursue that has a place in any type of practice where we're working with people with serious mental illness who typically and traditionally have been considered not able to make decisions for themselves. And we find in the shared decision making process that even during periods of crisis, people are able to make some types of decisions and that's what we mean by meeting a person where they are. And so by allowing a person to make even the most basic decisions, for instance, a person might be in a crisis stage and they're trying to be stabilized and they're not at a point where they can start to begin to partner in treatment decisions, but they might be able to make a decision about whether or not they want to participate in a group or they might want to have a particular person as a visitor or they may want to not talk at a particular time. So those are the type of decisions a person might start with. And when they have that feeling of personal agency, that they have some degree of control over themselves and their life, then they become open more and more increasingly to partnering with perhaps the charge nurse or a technician on the unit when they're in a crisis stage to make increasingly difficult decisions. And at some point, they begin to be able to partner in the type of decisions that they're going to need to make to continue treatment once they leave that inpatient or crisis stabilization environment. The more engaged and involved in individual fields, the more likely they are to practice self-management. This is usually referred to activation of self-management. And we find that there's a number of different ways to activate self-management in people. One way is, again, through opening up to the shared decision-making process so that the person is brought in to a clinical and therapeutic relationship where they are given the ability to participate as an equal in discussing choices, discussing their own possible solutions, talking about what has worked or what hasn't worked for them previously, and what their goals are. And then the clinician is able to talk with them from the point of view of, I understand what you're telling me about your situation, your goals, your preferences, and here are the options that I think are available to you. This may be in terms of medications, it might be in terms of other types of therapy or even social supports. But again, as the person begins to be given this ability or this power over their own life, they begin to have ownership. And when people feel ownership, they're much more able to rebuild their life or as we would say, move into recovery in the context of living with serious mental health problems. A lot of factors contribute to poor decision quality. If we go to, if we look at a relationship, maybe a traditional relationship that is not involved in a shared decision-making process, a lot of times individuals are gonna make decisions that they don't completely understand. So they may be given a choice, but if they haven't been given the information that informs them to make a choice, as I say, an informed choice about further treatment, then they may be tending to make the wrong choices or choices that may be effective from a clinical point of view, but may not fit into their life and consequently they don't work. They may also feel less empowered. And when a person feels disenfranchised or less empowered in a treatment value, they're far less likely to ask the important questions that might be necessary. And one of the things in shared decision-making that can be very, very effective in starting that relationship is the idea of peer support prior to a person's appointment with their clinician. And the purpose of peer support at that point in that chain of actions is to help a person identify the things that they feel they want and need to discuss with their clinician. Many people find that when they go into that meeting with their doctor, and particularly when it's following a hospitalization, they go in and it's relatively short. It may be a med management type meeting. They may have had a lot of questions in mind, but as they get in there and they get in the presence of a clinician, frequently they forget the things that they wanted to bring up or they feel that there's not time or they feel that it's really inappropriate for them to try to put their ideas on the table. There's actually a system called Common Ground, which is available to mental health care provider agencies that allows the individual to, particularly these are set up frequently in waiting rooms in community mental health centers, where there's a computer station available to individuals and they can look up issues about their diagnosis or issues about treatment. And it allows them to fill out a form that they can take with them into the meeting and provide the clinician with a copy. And then they have a copy of themselves and now they can discuss these things. And this also kind of puts the clinician on notice that, okay, this is going to be a joint process that we're gonna work on together. Because without that kind of information, the physician or other clinician can have a real difficulty in understanding the individual's preferences. And consequently, when they don't understand the preference or they misunderstand the preference, it becomes even more difficult to build a trusting relationship between the provider and the individual receiving services. Self-management and decision-making is still pretty relatively new for people with psychiatric diagnoses, particularly when we're talking about people with a diagnosis that's considered to be a serious mental illness. And frequently, people with these diagnoses are treated different in social circumstances. They're treated differently by friends and family members in society at large. And they feel, because of this, that they are less important than other people who may be receiving services from the same clinician. A lot of really good work has been going on to move this way of approaching psychiatric services forward to where we finally arrive at a place where each person feels that they're empowered to make the decisions that are available to them at the point that they're at in their life. And so again, you don't immediately expect someone to decide which medication is best for them if they're still having trouble in ordering their thoughts so that they can begin to build that relationship with the doctor. So the first appointments when you start to treat somebody may be just a process, the first several, may be just a process of getting to know each other, the clinician getting to really understand what has gone on in a person's life, what has brought them to the point that they're at at this meeting, and then how do they really want to move forward, and what are their ultimate goals for a meaningful life for them? So we're really, because of this work that's been done and because of the fact that we're beginning to really have meaningful research into behavioral health and shared decision-making, we know that this is a really promising practice and that it's something that is highly recommended to increase the availability of the feeling of personhood and engagement, empowerment, and to move towards real self-management or activation.
Video Summary
The video transcript is a webinar on shared decision making in the context of serious mental illness (SMI). The webinar is led by Patrick Hendry, Vice President of Peer Advocacy Supports and Services for Mental Health America. Shared decision making is described as the process where clinicians and individuals receiving services work together to make health decisions, taking into account the individual's values, preferences, and circumstances. The webinar discusses the importance of shared decision making in improving outcomes for individuals with SMI and the challenges faced in implementing this practice. It emphasizes the need for trust, equality, and open communication between clinicians and individuals. The webinar also explores motivational interviewing techniques, decision-making tools, and the stages of change in the context of shared decision making. Research on shared decision making in behavioral healthcare is mentioned, showing its positive impact on knowledge, decision-making confidence, and treatment adherence. The webinar concludes with a discussion on overcoming power imbalances and promoting self-management through shared decision making. Overall, the webinar provides insights into the importance, benefits, and challenges of shared decision making in the context of serious mental illness.
Keywords
shared decision making
serious mental illness
Patrick Hendry
peer advocacy
health decisions
motivational interviewing
behavioral healthcare
Funding for SMI Adviser was made possible by Grant No. SM080818 from SAMHSA of the U.S. Department of Health and Human Services (HHS). The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement by, SAMHSA/HHS or the U.S. Government.
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