NP Notes: Shared Decision-Making in Schizophrenia Care (SCZ Episode 6)

Craig Chepke, MD, DFAPA: Hello and welcome to the Great Exchanges in Schizophrenia. My name's Craig Chepke. I'm a psychiatrist in private practice at Excel Psychiatric Associates in Huntersville, North Carolina, and the Scientific Director of Psych Congress. And joining me today is my friend and colleague, Amber Hoberg. Amber, tell us a little bit about yourself.  

Amber Hoberg, MSN, APRN, PMHNP-BC: Well, thank you so much. My name is Amber Hoberg. I am a psychiatric mental health nurse practitioner. I am from the San Antonio, Texas area. I have an outpatient practice that services rural markets, group homes as well here in San Antonio, as well as I work inpatient for Baptist Healthcare System.  

Craig Chepke, MD, DFAPA: You wear a lot of hats in all of them. I think it's really important to be able to connect with the people that you're working with. So I want to discuss shared decision-making today. Define shared decision-making for the audience please.  

Amber Hoberg, MSN, APRN, PMHNP-BC: So, for me, shared decision-making is not where you're making the decisions for the patients. It's where you're getting the patients involved in their care and making sure that their needs, their wants, their goals, the things that they're wanting out of their care are heard. A lot of times this can be a process. It's not something that's always done in one appointment. This takes, I have found, I have seen a lot of my patients for eight years and sometimes it was something that we do all the time trying to get the patients involved, meet their goals, meet their needs, because often when you meet their needs, you're going to meet the goals that you're looking for in your practice as well. So, for me, shared decision-making is utmost importance in my practice.  

Craig Chepke, MD, DFAPA: Well, that sounds really complicated, Amber. How do you manage that?  

Amber Hoberg, MSN, APRN, PMHNP-BC: Well, it can be a little bit difficult because sometimes when I'm first seeing a patient, sometimes they're a little closed off. So often sometimes I even spend the first visit just talking about the patient. What are their interests? What are their things that they enjoy? Trying to find light commonalities. ‘Oh, you like that kind of music? Well, I like that kind of music too.’ Just opening that line of communication, which is so important. Shared decision-making does take really good communication. You have to make sure that you're communicating well, but that you also have active listening, where you're listening to the patient, summarizing back to them the things that they're telling you: Am I hearing you correctly? And making sure that they feel heard and that they feel valued during the appointment. And so it can be a little difficult, but once you really kind of start utilizing this, it almost becomes second nature.  

I often will bring the patients in and like I said, my first appointment may just be sharing about commonalities. And then the second appointment, maybe I'll start getting into what are their goals, what are their wants when it comes to treating their condition or what kind of things are they looking for? Sometimes, like I said, they may be living with parents and they want to go live on their own. They want to live in a group home or maybe they're living in a group home, but their goal is eventually I want to move into an independent kind of apartment setting….You know, wanting to hear that and wanting to help the patient every step of the way to meet that goal as much as possible. Sometimes those goals can happen very quickly. Sometimes it may take three, four years to get them to that goal that we're trying to meet. But it's always at every single appointment that I see my patients, it's how are we moving towards getting to that goal and not having slide backs, not having setbacks in regards to that. So I find that it becomes second nature once you start really implementing it and doing that in your practice.  

Craig Chepke, MD, DFAPA: I really agree with that. And actually I’ve sometimes, when I've tried to describe shared decision-making to people, I say something along the lines of, it's not something that you do, it's just someone that you are, that you're curious about them, genuinely curious about their life and what they want out of life, and that you view yourself in an equal footing with them that just because you might have the education and the medical license or what have you, then that doesn't make you any better or superior to them, that we're sharing this experience together. And so I think those are some key aspects to it. What are some of the benefits do you think that come about because of shared decision-making in schizophrenia?  

Amber Hoberg, MSN, APRN, PMHNP-BC: I feel like my patients do better. They're more willing to take their medications. When I have patients that get to be involved in picking what kind of medication they're taking, I give my patients choices. I'm like, okay, you've come in, we don't like what you're currently on. Here's some choices. And then I give them what I call the good, the bad, the ugly. What are the good aspects? What are the things we need to monitor for some of those adverse reactions? And then what are some of the things, because I try to align with my patients, I try to compromise with them because I tell them all the time, what are your wants and medications? Well, I try to meet those as much as possible, but sometimes I find I'm not always able to meet every single one of them. But at least I could try to compromise with them as much as possible.  

And when I kind of explain this to patients and I'm like, okay, now you have a choice. Out of all these choices that I gave you, which one sounds best to you? And I always tell them, if this one doesn't work, well, we have the other two that we discussed to go back over if this doesn't work. So really getting the patient to pick. A lot of times what I find is non-compliance becomes less of an issue. They take the medication, they're like, oh my gosh, I was part of this. I am going to keep taking it until the next appointment so that then I can talk about it with Amber and we can try to figure out where we go next. So often I find non-compliance becomes less of an issue when they start to become involved. Also, when they become involved, they're more excited to come to the appointments.  

So missing appointments becomes a lot less frequent because they're like, ‘Hey, Amber's just an equal with me. We sit down and we talk, we align with what my goals are, we align with what I'm looking for in life.’ And so often when you have that, they're more excited to come to the appointments. They're less apt to miss an appointment just because they're getting heard and they're getting their needs met every time that I meet with them. So I find that there's just a lot of benefits. Also, if the patient allows, family sometimes comes to these appointments, and so sometimes we can work through challenges that are going on. Maybe there's a challenge that's happening between the family and the patient. How can we work through that? Or maybe the family's not aligning with the same goals that the patient's aligning with, so how can we all get on the same page to move in the same direction? So sometimes if these patients allow, we can bring families and we can bring other support people in to try to continue down that road of getting them to where they want to be. So, there's so many benefits with shared decision-making.  

Craig Chepke, MD, DFAPA: I totally agree with you. I've encountered the same exact thing. I think so as well that no one wants to be told, do what I say because I say so, not my kids, not the people that I work with. And if they are, as he said, having a hand in the choice of the treatments, well, it's only common sense that they would be more likely to actually follow-through with that. So, let's talk about some of the challenges of shared decision-making, though. One that you kind of alluded to is that you've got to compromise. That might not be your first choice that they decide to go with. Talk about that a little bit.  

Amber Hoberg, MSN, APRN, PMHNP-BC: Yes, there are some challenges because sometimes they want a medication to be perfect. Well, not every medication is going to align always with what they're looking for. So sometimes I'm like, okay, what are your top two where I'm going to have to try to align a medication that maybe is still not in the wheelhouse of what they're wanting to be, but it's better than other choices that I could make that may not align with what they're wanting. So sometimes I still get patients that'll say, well, I don't want to really take any of them because it's not aligning with what I want. So it's really trying to partner with the patient and try to explain to them that this whole process is trying to compromise. I'm going to compromise with you to try to meet your needs, but you're going to have to compromise with me a little bit to try to make sure that we can get you on a medication that you're going to stick and stay on. So sometimes I do find challenges that often sometimes they don't like the choices that I'm presenting to them. Or maybe one of the goals that they're trying to meet, it may compromise their health or it may not be good for them.  

And so really trying to get them to reshape that or rethink about that or trying to explain to them, this is not really beneficial because this eventually is what could happen down the line. So I often have some patients that will come in with these unrealistic goals or they’re goals that are going to actually set them back and not really help them move forward with treating their condition.  

Craig Chepke, MD, DFAPA: What are some examples of that you've encountered?  

Amber Hoberg, MSN, APRN, PMHNP-BC: One of the examples that I had was I had a patient who he wanted to go move to a different country, and I kind of explained to him like, well, that is okay. People that have schizophrenia, they need a stabilizing support system. And if you move overseas, your family, I mean, his family was very, very involved.  

And it was like, you're going to really lose that because now, I mean they can call you of course, but you can just tell them what they want to hear and they don't really know what's going on over there. I also explained when you move to different countries, different countries handle mental health in a different way. And so the support we're trying to align with you here may not be what's available in other countries or other places that you're wanting to live. So for him, he just wasn't in a place at that point in time where I felt like we could meet that goal. I kind of told him, let's work with a smaller goal, which we were able to identify, but it kind of started out with this goal that I was like, oh, I don't know that we're going to really be able to align with that right now.  

So I have had some challenges in that manner. I've also had other challenges where families and patients don't align. Families want something totally different than what the patient wants, and sometimes that creates some friction or some problems in their situation. So often I find having these family meetings where we bring them in and make sure that families understand when you're doing shared decision-making: Yes, I'm trying to hear the family, but my goal is to align with the patient and try to make sure I'm trying to meet the patient's goals as much as possible. So, I have had some times where I've been in my practice and there's been some arguments going on between what family wants and what the patient wants, and trying to get them on the same page sometimes can be often a little challenging as well.  

Craig Chepke, MD, DFAPA: Yeah. I want to circle back and underline something that you said. It really stuck out to me as a great idea that sometimes you ask them to pick their top two choices and then you can talk more about those. That's a great choice. If you present a number of options, what if they pick the one that you think is just the absolute worst? And then you don't want to overrule them and say, well, no, don't pick that one. But if they can pick two, the odds that are going to pick the two “worst” ones is a lot less. So at least one of those…and then you say, well, yeah, those are two great choices. I mean, of those two, here's the pros and cons of those, and maybe they'll shift over to the one that is more along the lines of what you thought would be great. So it's a great way of not getting boxed in on your side. So I think that's really savvy.  

Amber Hoberg, MSN, APRN, PMHNP-BC: Well, and also when I'm talking about adverse events too—because sometimes they want a perfect medicine, and we all know all medications have side effects—and so sometimes they're looking for this perfect medication that no medicine is going to actually achieve. So you can also use your top two as far as like, okay, if you had to pick out of these five things you told me you didn't want and why you didn't want to take a medicine, what would be the top two that you don't want? So then maybe I can try to align with that a little bit more than trying to align with all five of these that may be impossible also to find a treatment that might meet that person’s needs. 

Craig Chepke, MD, DFAPA: Exactly.  

Amber Hoberg, MSN, APRN, PMHNP-BC: So, you can do it in both ways when they're trying to tell you what they don't want and why they may quit taking a medication: Well what are your top ones that would make you really quit taking them? But what are the ones that you would kind of maybe be okay with if we had that in medication? And also on the treatment side, what are your top two choices? What two are you thinking about? And then really elaborating a little bit further as a provider, making sure they understand all the ins and outs of both options. And often what I find is that they often pick the one I probably would've picked the first time just based on what we talk about and how we navigate through that. So, it kind of works on both sides when you're trying to make decisions.  

Craig Chepke, MD, DFAPA: So, let me throw another challenge your way that I've run into on a number of occasions. You're doing shared decision-making, and then the person says to you, you've given the options and ask, okay, which one would you like to go with? ‘Well, you're the expert. That's why I'm coming to you: You pick.’ What do you do then, Amber?  

Amber Hoberg, MSN, APRN, PMHNP-BC: So I hear that often, and sometimes when they put it back in my realm, I let them know, well, I can help you make that decision, but I really want them to really help me shape their treatment. So what I'll often tell them, because I also sometimes will hear, ‘Well, if I was your child, what would you pick for me?’ kind of thing as well. And so often I say, well, look, I am my own person and you are your own person. So I want to try to go together. And I often will tell them, well, these are the top two—you know, if I'm giving them three options—well these are two that I would choose, but both of them are good options. So let's go through each one and maybe talking about this will help you determine which one you think might be better. But sometimes I'll tell them, if you really want me to pick a medicine, I'll be happy to help you pick a medication. But I tell them, I don't like to dictate your care.  

I also don't like you to—for me to have to pick that medication for you and then what happens if you really don't like it? And then you're like, ‘Well, I'm not going to go back to see her because she picked that horrible medication for me.’ So I often say, I like your input because I want to make sure whatever I pick and whatever you pick, that you're going to be taking it and that you're going to be successful when you leave the appointment. So a lot of times I try to reshape that in a way of, sure, I'd be happy to pick one for you, but you may not be exactly happy with the choice that's made. And so let's go a little bit more through these. Sometimes I feel like they ask you that question because they're not real sure about what you're presenting to them.  

So then I'm like, okay, let's take three off of the, let's talk about the two that I would kind of pick for you and let's go over each one in detail. And then often I find then the patient's able to kind of say, ‘Oh, well, it seems like this one might be a little bit better, so I think maybe we should start with that one.’ Then I'm like, great. So I'll give them two choices. I may, I would pick for them and then kind give them a little bit more so maybe they can narrow it down. Sometimes giving them too many choices can be overwhelming.  

Craig Chepke, MD, DFAPA: Exactly. I think many of your comments hit the nail exactly on the head with how I think about it, is that they may not have understood any of them, and so it's just like, well, then you pick. Or it might be that they just feel overwhelmed, and what if they make the wrong choice? And so I love that, that you say, well, I could pick one for you. And then you go on to put the ball back in their court and using that same type of, well, let's say we're down to two, and then that puts the ball back in their court and they don't feel like you're just like, well, no, I'm not going to pick, you pick. I'm not going to pick, you pick. I'm sharing this decision with you, you pick. Nobody wants that. So I think the key that I'm picking out from you is that in all these decisions, it's that you just roll with it, that you continue to supplement the information that they have, and eventually, almost always their own choice is going to bubble to the top. You have to just make sure that you're on the same page and they're on the same level with you every step along the way. This has been a great conversation, Amber. Thank you so much for joining me today.  

Amber Hoberg, MSN, APRN, PMHNP-BC: Well, thank you so much. I appreciate it.  

Craig Chepke, MD, DFAPA: Thanks to our audience for tuning into the Great Exchanges in Schizophrenia.