NP Notes: Educating the Schizophrenia Care Team (SCZ Episode 5)

Craig Chepke, MD, DFAPA: Hello and welcome to the Great Exchanges in Schizophrenia. I'm your host, Craig Chepke. I'm the Medical Director of Excel Psychiatric Associates in Huntersville, North Carolina, and also the Scientific Director of Psych Congress. Joining me today is my friend and colleague, Amber Hoberg. Amber, please tell us a little bit about yourself.  

Amber Hoberg, MSN, APRN, PMHNP-BC: Well, thank you so much and I'm so excited to be here today. My name is Amber Hoberg. I am a psychiatric mental health nurse practitioner. I am from the San Antonio, Texas area. I have my own outpatient practice with Morningstar Family Medicine, and then I also work inpatient for Baptist Health System.  

Craig Chepke, MD: Yeah, so, Amber, those are the hats you currently wear. I haven't known you for years. You've worn a lot of hats. You've worked with a lot of patients with serious mental illness, and I want to talk about the schizophrenia care team today. But, before that, let's just flesh out a little bit more. What do you see as the needs of people living with schizophrenia having?  

Amber Hoberg, MSN, APRN, PMHNP-BC: Well, I take care of a lot of patients with schizophrenia. About 80% of my patients that actually are in my practice do have schizophrenia, and I deal with this on a regular basis in my practice. And so a lot of times what I see, it's sometimes more than just medication management that I often see that these individuals need. A lot of times they need counseling, they need help with housing. A lot of them are living with family. Family get very burnt out when it comes to taking care of these individuals. So I work a lot with trying to find group homes or different places for my patients to live. So I have a lot of people in the community that help me deal with that and kind of go through making sure that we're able to get patients into different kinds of housing situations, working with counseling situations for my patients, getting family support.  

The whole goal for patients with schizophrenia is to be able to keep their family involved in their life. And so I often have to try early on to get support for the family. Trying to explain what schizophrenia is that these individuals sometimes don't always stick and stay on their medications. And so often I'm trying to educate family members, finding other families within the community by using NAMI or different types of services in order to try to help get families to understand what these patients are going through on a daily basis. So often what I find is it's this multifactorial approach that has to happen for these patients to feel supported.  

Craig Chepke, MD: Absolutely. So yeah, they are going to need medication treatment for one, but it doesn't just stop there. They may need psychotherapy. They definitely need support, whether it's family, friends, or potentially may come from another setting, like a group home, but they need to have some sort of, ideally, stability in their living situation as well is a lot of what I'm hearing from you. So with those needs and those are needs, basic human needs really, and that's one thing that I always think we need to think about is that people with schizophrenia are just that, people, and they have very similar basic human needs that all of us have for caring and support and kindness and that we need to foster and nourish those as well. So with that being said, that's a great list of the overall overarching needs, but who are the potential individual team members of a broader interdisciplinary schizophrenia team? In an ideal world, which obviously we don't live in, not everyone has access to everything, but if you could name your own all-star team to people living with schizophrenia, who would be on your team?  

Amber Hoberg, MSN, APRN, PMHNP-BC: Well, I think first and foremost, they need a case manager, somebody that's there to direct the care, so somebody that's going to be working with them on a daily basis or a weekly basis. I have some patients that are very ill. They go in and out of the hospital a lot, so they tend to have sometimes daily or every-other-day touchpoints, where I have other patients that might be a little more stabilized in their schizophrenia. And with that, sometimes it's every couple of weeks to once-a-month touch points as well. But always a case manager, somebody there to direct their care, of course, a psychiatric nurse practitioner or a psychiatrist there to really manage the needs of the patients. Looking at positive symptoms, negative, any of these other symptoms that these patients are having. Are their medications working for them? Are they taking them on a consistent basis?  

Do we need to have other ways of administering the medications to them is also very important as well. I know some people think that schizophrenic patients, that doing therapy with them sometimes is not always able to be able to do that with the patient, but I have found that a lot of my patients do like having a therapist involved. They get to talk with them about what they want in life. And often, what I find, is I want the patient's symptoms to get better, but the patients want simple things, like I would just like to have some friendships in the community.  

Craig Chepke, MD: Exactly.  

Amber Hoberg, MSN, APRN, PMHNP-BC: I would like to be able to volunteer or have a small job or somewhere I can feel kind of useful. And so having a therapist kind of help them navigate through and meet those goals is very important as well. Like I said, family support. I want the families to be involved. Having that family support is super, super important because they create that support system for patients when they don't have that available to them. And so I always try right up front to get families involved in different types of arenas, looking at NAMI, going and putting them in touch with other families that have experienced schizophrenia or have a loved one living with schizophrenia, putting them in touch with other kinds of resources or support systems to help get them to understand about schizophrenia and kind of the trials and tribulations that come with taking care of an individual that has schizophrenia as well. A lot of my schizophrenic patients are also on long-acting injectables, so I find the nurse who administers this is very important as well. 

Getting them on the same team as us because we need to all be speaking the same language about what this long-acting injectable is going to do for them. I also work out in the rural communities as well, and so often sometimes I'm the one going out there and administering these injections or having to partner with a pharmacy out there that actually will these to the patients as well. So just making sure we're all kind of speaking the same language. We're all making sure that the patient is surrounded and everybody is there to take care of these individuals as much as possible. And believe it or not, sometimes even working with the insurance companies, I mean, I know that sounds really funny, but a lot of times I work with insurance companies to try to see what other resources are out there that are available for patients that maybe they don't always know that they have here. I live in Texas, in our Medicaid system, we're able to help them find some housing, some areas that help get them their basic needs, their ADLs kind of met, and insurance sometimes will pay for those things. So, I work a lot with the insurance companies as well and getting the families and getting the patients kind of comfortable with navigating through how might they be able to get the things that they need on a daily basis.  

Craig Chepke, MD: And some of those last couple points you made, I feel so strongly about. You mentioned case managers often that can be social workers or they could be separate individuals, case manager and social worker. But to me, social workers are so important to mental health outcomes. When I met the best social worker in the world, I literally married her to make sure she'd always be by my side fighting for our patients together. And that's a genuinely true story, but I can't tell you how many times we've had people with schizophrenia who clearly qualify for Medicaid or food stamps, but they're not receiving those benefits because the system is so complex and they don't know how to navigate it or know that, think that they would qualify or that it's an option. And so I love that approach of advocating for them with the system, whether it's insurance system, whether it's private or government-based to make sure that they're receiving all the benefits they're entitled to. And so that's absolutely critical because there has to be a way to pay for all these wraparound services. So great points. Great all-star team. I'd add one, at least one member, well, I can think of two, actually. So one would be a primary care provider.  

Amber Hoberg, MSN, APRN, PMHNP-BC: Oh, Absolutely. 

Craig Chepke, MD: Yeah. I mean people with schizophrenia have generally a raft of physical comorbidities. And while suicide rates are unbelievably high in schizophrenia, they're really dwarfed by the cardiovascular death, early cardiovascular death, 10, 15, 20, maybe even more years earlier than the average population. And I'd say peer support is another great member of the team that if it's available to help, and especially if it's someone a peer who is on an LAI, that's, wow, jackpot there because they can let them know that, hey, it's not what you're thinking at first glance and here's why I like it. That's a great resource if it's available. But I really love, and I want to circle back on when you used the phrase a couple of times and I really like it, make sure we're all speaking the same language. So talk to me more about collaboration, the importance of it and how you ensure that in the teams that you work within.  

Amber Hoberg, MSN, APRN, PMHNP-BC: I think within the last 15 years working with patients with schizophrenia, I have found that if I dictate to my patients what to take, they often aren't going to do that. I mean, I have had patients literally come in my office, I tell them, okay, you're going to take this medication and then they walk out the door and they throw it away and they never come back to see me. And so a lot of times I was wondering why was I losing these patients? What was going on that was causing them not to come back and see me? And it's a lot of times because they want to be involved in their own care. And so I have learned collaboration is utmost importance, especially with patients with schizophrenia. They have to learn to trust you, especially if they're having paranoia or they're hearing voices that are telling them, oh, that person you may not want to trust.  

You're going to have to learn how to navigate through with these patients to get them to trust you and to actually see you as an ally and not as somebody that's like their enemy. And a lot of times, let's face it, these patients with schizophrenia, a lot of times they've been in the system a long time. It was good and bad in every system. And so sometimes they may see you as the person who, oh, well I've seen somebody like you before and I don't really care for that person, so you might be just like them. So it's really kind of dispelling the myths that we're all not the same, that we're all here and that my job is to collaborate with them and to work with them to get them on something that they're going to stick and stay on and then get them to where they can meet their goals, whatever that is that they're wanting to meet.  

Because I know if I meet my patient's goals, often what I find is I'm going to meet my goals as well. So, if my goals are, I want the hallucinations and the paranoia to go away: If I help them meet their goals, which is maybe just something as simple as, “I'd like to not have to live with my family. Maybe I want to go live in a group home where I can live with patients just like me.” So it takes a journey to try to follow to get them to that point. So it's talking to them about things like, okay, how are we going to get there? And part of that is going to include getting on medications that are going to help manage this. A lot of times that's also going to take them having to help pick a medication that they're going to stick and stay on that they're going to be able to tolerate or not have adverse reactions that maybe would make them want to stop their medication.  

So as we work on this journey to get them where they want to be, I often meet my goals as well just because it takes all of that to get them to be able to live in a place where they want to be independent or around other people that are just like them. So collaboration for me is super important. I have learned that you're much more successful when you have these individuals that when you'll work with the patient versus dictating to them what they should do or what they should take, you often will lose patients and they often won't do what you're asking them to do if you don't let them have what I call skin in the game, which means that they have that piece that they're bringing to the table in order to make sure we're doing all the right things for their care.  

Craig Chepke, MD: Yeah, and I hear so many things from you that tell me why you're so successful in your work with these individuals. Because you said earlier, why do we think the people schizophrenia can't benefit from therapy? If we just tell them what to do, the old paternalistic model of healthcare, that's not going to work, and really breaking down those barriers. I haven't known you for so long, you have such a huge heart and I think that really shines through. But what about the rest of the care team? How do you interface with them? I mean, you're busy, you see so many patients, there are such a need. How do you make time to collaborate with other treatment team members?  

Amber Hoberg, MSN, APRN, PMHNP-BC: So, for me, we have weekly touchpoints where actually I meet as a team with my care arena. Most of the patients that I take care of that have schizophrenia, they live in a group home setting. Well, they're often managed by a larger corporation. And so I often do have weekly touchpoints with these different lists of behavior analysts. I'm meeting with the peer support person, we're meeting with the primary care, we're all working together as a team on what are we trying to accomplish of what is going on with these patients. So we literally spend hours once a week talking about every single patient that has schizophrenia or any kind of chronic mental illness that actually is requiring any kind of larger support we meet to make sure that each one of us is heard. We all know kind of what each one of us is doing.  

I hear what they're doing as well as what I'm doing. And so it helps us all kind of get on the same page so that we can wrap our arms around that patient to make it a little bit better versus everybody doing what I call the siloed approach, which I often feel doesn’t work. It's when one person is doing this over here and the other person is doing this, and we're not able to come together and communicate. Sometimes that can make it a little difficult. We're trying to wrap those services around that patient. But when it's siloed and the providers or the specialists are not talking, it kind of also can make it a little more disconnected for the patient. We also often invite the patients into these care meetings as well, and any family member that wants to be involved to kind of let them know where we are, what we're trying to approach this week, what this is looking like.  

We also have the case manager in my particular setting, it's a social worker and they tend to meet with these patients, what goals have we met? Where are we going from here? So they're constantly pushing the buck with the patient to try to get them to a place where we're meeting those goals and then coming up with new goals along the way as well. So for me, we meet together as a team approach, and I do this once a week. We do it virtually because we're all in different locations, and so we come together that way. I also have a group home that's out in the rural markets, which that one's a little more difficult because everybody's coming from different areas. So a lot of times we communicate through email. So we'll have one thread email, we'll be able to talk about what's going on, what we're going to do, and kind of where each of us is working in regards to what we're doing with those particular patients. So I think as long as you kind of work together in that collaborative model, everybody's coming together to talk about what that team setting is looking like and what we're all doing. I think you're going to be a lot more successful than doing that more siloed approach where nobody's really talking,  

Craig Chepke, MD: Right? So you have a standing meeting every week that you discuss everyone on your panel with schizophrenia. But even for clinicians who work in slightly different settings, I think it's important to carve out that time and schedule it because everyone is so busy. If you just say, oh, well, I'll touch base with the therapist sometime and I'll touch base with the primary care one day. What if tomorrow never comes? So we need to carve out the time for it and be regimented about it, I think is a main message. So unfortunately, we're out of time for this episode, but I really appreciate your insights on this, Amber, and thank you very much for joining us.  

Amber Hoberg, MSN, APRN, PMHNP-BC: Well, thank you. Thank you for having me here. I have really enjoyed this and look forward to many more.  

Craig Chepke, MD: And thanks to everyone tuning into the Great Exchanges and Schizophrenia podcast.