Primary Care: #6 Emerging Adults with Mental Illness

The views and opinions presented in this podcast and publication are solely my responsibility and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors, or Methodology Committee. Danny van Leeuwen (Health Hats)

The Show

Proem

According to the World Health Organization (WHO)

Globally, one in seven 10-19-year-olds experiences a mental disorder, accounting for 13% of the global burden of disease in this age group.
Depression, anxiety, and behavioral disorders are among the leading causes of illness and disability among adolescents.
Suicide is the fourth leading cause of death among 15–29-year-olds.
The consequences of failing to address adolescent mental health conditions extend to adulthood, impairing both physical and mental health and limiting opportunities to lead fulfilling lives as adults.

Most mental health concerns, especially for emerging adults, first present in primary care, placing them in a critical role for addressing these concerns.

I’m delighted to speak with Dr. Bonnie Engelbart, primary care physician, in this sixth episode in my series on Emerging Adults with Mental Illness.

Podcast intro

Welcome to Health Hats, the Podcast. I’m Danny van Leeuwen, a two-legged cisgender old white man of privilege who knows a little bit about a lot of healthcare and a lot about very little. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all of this.

Health is fragile.

Health Hats: Bonnie. So good to see you. Thanks for joining me. I love that we can do this. So that everybody knows, we’re friends, and I’m taking advantage of our friendship to mine your experience and skills. For a long time, I’ve been interested in young adults and healthcare for young adults. I did a series about young adults transitioning from pediatric medical care to adult medical care a few years ago. And that was fascinating. It’s so different. And when I worked at Boston Children’s, the adolescent community was very outspoken, and I learned a lot just by sitting back and listening to them. So anyway, why don’t we start when you first realized that health was fragile?

Bonnie Engelbart: The first time it was apparent to me was during my last year of medical school. I spent two months in Swaziland, a small country in the middle of South Africa—an impoverished country with minimal healthcare resources. I went there with a few other medical students, some residents, and a physician supervising us. But as medical students, we were thrown in and put in charge of things that it would never be given to medical students in the United States. I oversaw the men’s medical ward in the hospital for the two months that I was there. And the medical conditions we were seeing were things you wouldn’t see in the United States, like an enormous number of people with Malaria. They were estimated possibly as high as 20-25% of the population was HIV positive then. We were seeing people with end-stage HIV in the hospital.

Health Hats: You were in charge?

Bonnie Engelbart: I was in charge. We cared for many people with injuries from car accidents and unsafe working conditions. These things wouldn’t happen as frequently in the United States because we had better preventative care for infectious diseases. We had more rules around driver’s licenses and traffic control, and we had OSHA to regulate working conditions. So, I think that was the first time I was aware of the fragility of life.

Primary care practice at Cambridge Health Alliance

Health Hats: Please tell us briefly about your practice.

Bonnie Engelbart: I work for Cambridge Health Alliance, an organization with two hospitals in the Boston area and several primary care clinics based in the community. I am the medical director for one of those primary care centers in Everett, a city of about 50,000 people just outside Boston. It’s essentially an immigrant community. And I’m a family doctor, so I see people from birth through death. I do the full spectrum of ages.

Screening for mental illness

Health Hats: When you think about the young adults in your practice, what do you see that you’re thinking, oh goodness, there might be mental illness here?

Bonnie Engelbart: Unlike a pediatrician, I see patients as they progress from being children to adults. They don’t leave my care. Nor do they initiate my care during that transition from childhood to adulthood. They can stay with me. I see them as they go through that transition. And for all ages, we’re doing mental health developmental and screeners. It’s once a year. It’s not at every visit. But we have a standard screening form for teenagers called the PSC, which includes questions about depression, anxiety, attention problems substance use.

The PSC-17 Pediatric System Checklist is a brief questionnaire that helps identify and assess changes in emotional and behavioral problems in children.

Bonnie Engelbart: When kids turn 18, we transition to a form called the AWQ, Cambridge Health Alliance Adult Wellbeing Scale, which screens for depression, anxiety, and substance use.

The referral maze

Health Hats: So, you’re dealing with mental health, emotional health, and physical health. In our system of fragmentation as a family doc, you’re dealing with all of it. But then you end up referring people out when you start feeling like this is a little more than you can handle. When that ends up being mental anxiety, depression, harm, whatever. How do you decide it’s time? Is it more than I can do?

Bonnie Engelbart: As a family doctor, much of our care is around mental health and depression, and anxiety. Those are conditions that I would be managing, and I wouldn’t refer out. Certainly not as an initial step. I think the times when I would refer out would be if I’ve prescribed a medicine and I’ve been adjusting medications and trying different things, and the things I’m trying are not working. Obviously, if someone is suicidal, I will send them to the hospital. For people with severe depressive symptoms, I often will try to refer them, but the reality is that there aren’t adequate resources. And so even with people with a significant illness, I often carry that care for months before they can access mental healthcare. For things that are a little more complex, bipolar or schizophrenia, schizo-effective, or something like that, we do have eConsults, so I can take a history, do my best to ask all the appropriate questions, and then share that chart with a psychiatrist electronically. They’ll review the history I’ve collected, and within a week, they’ll get back to me with medication recommendations.

Health Hats: Is that within Cambridge Health? That’s a nice feature.

Bonnie Engelbart: It’s a very nice feature. It doesn’t give me help in the moment. There’s no way for me to page a psychiatrist or get help right then when I see the patient. So, there is always this delay. Which generally is okay. But some patients really are in quite a lot of distress. They’re not suicidal, so sending them to the hospital is inappropriate. But you also would like to do something that day and can’t.

Team building

Health Hats: If access to resources is limited, and then it seems like you have to pull in, then any resources you can, and you’re blessed to have this e-consult resource. But then there are resources of the family, the school, the peers your staff. How do you try to assemble a team, so it’s somewhat adequate?

Bonnie Engelbart: I think that pulling together a team is tricky. Technically, the care they’re getting is confidential for someone who has turned 18. And unless they give me permission to involve the parents, I’m not allowed to. And for some young adults who want their parents involved and then I would call them or ask them to come to a visit. But for some of these patients, I would say most don’t want their parents involved, right? And so that part of the team is not there. In terms of involving teachers, it’s rarely the case. There may be communication with a guidance counselor at school. But even that can be very tricky. Consent must be in writing. We must fax the consent to the school. Faxing is unreliable. And then, you just have to make time to reach out to the school and hope that the person you’re contacting is available. There ends up being a lot of phone chases and missed connections with the schools.

Toll on staff

Health Hats: It must take a toll on you, your colleagues, and your staff that resources are so limited.

Bonnie Engelbart: It does. It definitely does. It feels very heavy. It feels like you’re not doing enough. Yeah. It’s a tough spot to be in.

The burden of stigma, lack of resources, barriers to continuity

Health Hats: If somebody has diabetes or they have a more acceptable issue. I don’t know how to talk about this stuff. We’re not a society that embraces mental illness. Because our resources are so limited, there’s stigma attached to it. It would seem then that you’re dealing with you don’t have the resources, or sometimes you do. Still, the continuity of care across those resources, being the family practitioner, is there a particular challenge even when you successfully find resources to maintain continuity of care with young adults with mental illness?

Bonnie Engelbart: I think there can be. I mean, if someone has a complex mental illness and they’re fortunate enough to be well connected with a therapist and a psychiatrist, I’m not keeping up with the minute-to-minute details of what’s going on with their mental health. The therapy notes are often kept private, even if that care is within my organization. I can’t read them. Psychiatry notes I could read, but they’re not automatically sent to me. And I will only become aware of the latest details if the psychiatrist reaches out to me or the patient reaches out to me, and that causes me to look at their chart. And then, of course, if their mental health care is outside of our organization that’s even less private practice or in a community mental health center, I wouldn’t have any information from them.

Need more bodies

Health Hats: What would you want to see if you could wave your magic wand? Or what would you want to have, or what could help this?

Bonnie Engelbart: Really, we need more bodies. We need more therapists. We need more psychiatrists. We need more case managers who could help with referrals or be the go-between between the primary care doctor and the mental health providers. The go-between, between the primary care doctors in the schools or whatever other agencies are involved. I think that would be tremendously helpful.

Health Hats: Does your organization like have unfilled positions or support positions? Yes.

Bonnie Engelbart: Okay. Yeah. Many positions for therapists and psychiatrists are unfilled. Also, unfilled positions called care partners.

Care partners

Health Hats: Like peer support?

Bonnie Engelbart: Kind of peer support. They can do some coaching around, like self-care or some relaxation exercises. Sleep hygiene. Sometimes they can have some behavioral activation encouraging patients to exercise or spend time with friends or self-care that helps with mood. Currently, we have a mental healthcare partner for adults. But the child role has been unfilled for several months. We just found out that someone was hired for that role. It’ll be a while before that person starts, is trained, and is fully up and running.

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Complex time

Health Hats: Wow. What should we be talking about in this area that we haven’t? What do you think people should know from the primary care point of view about young adult mental health and mental illness?

Bonnie Engelbart: It is a complex time.

Health Hats: Being a young adult?

Bonnie Engelbart: Being a young adult. Oh yeah, and right. Technically they’re adults when they’re 18, but that doesn’t mean they know how to navigate the healthcare system. There’s a lot of growing up that still has to happen. And they’re suddenly on their own in managing this complex condition and trying to access resources. Or healthcare providers if it’s a problem. It’s a very vulnerable time. Yeah. And so I think that’s the area that feels the most problematic or particular for this group of patients.

Changes over the past twenty years

Health Hats: How long have you been practicing?

Bonnie Engelbart: I finished residency 20 years ago.

Health Hats: Okay. So how do you think what you’re seeing with young adults? Is changing over those 20 years.

Bonnie Engelbart: That’s a tough question. And I think it comes up far more often, not just because we’re screening more, and I believe there is less stigma around. Okay. It’s almost more normalized. And so great that they’re bringing it up and asking for help, but there isn’t enough help. Yeah. And it falls on the primary care doctor because there aren’t enough mental health resources.

Health Hats: It feels helpless.

Bonnie Engelbart: Yeah. I’ve learned much about medication management in the past 20 years, but I am not a therapist. I’ll never be a therapist. I’ll never be a substitute for a therapist. That’s a crucial part of treatment for people. And it’s very hard to access. There just are not enough therapists.

Self-medication

Health Hats: Do you think that young adults who suffer and not getting treatment go the self-medication route more often, and then you have to deal with that? That there are substance issues on top of it.

Bonnie Engelbart: Yeah, I think it’s true. It’s true for all ages. Yeah. That people self-medicate. But it makes sense that a teen or someone in their early twenties would think less about the consequences of alcohol or daily marijuana use. Or they might dabble in opiates and quickly discover that they’re addicted. So yeah, I think it is a coping mechanism for people not accessing mental healthcare.

Questions for emerging adults

Health Hats: I’m almost done, but I’m working on a series about young adults and mental illness. And I am recruiting some people who have recently been young adults and talking to them about their experiences. Yeah. I want to ground this in lived experience. What do you think I should ask that would help you?

Bonnie Engelbart: I’d be curious to hear how comfortable it is for them to share these concerns with their primary care doctor. I’d be curious to hear if they did bring up concerns with their primary care doctor and how well it was handled. But they didn’t ask the right questions. And so, they didn’t know. I’d be curious to know if many young adults wish their primary care doctor had asked them more or discovered this about them?

Questions for administrators

Health Hats: I’m scheduling with some people who administer young adult mental health programs. So that’s the providers that there aren’t enough of. Yeah. What should I ask them?

Bonnie Engelbart. I know many agencies are trying to hire and can’t fill positions. But I do think about the model of mental healthcare and that there are inefficiencies in it. I think many traditional psychiatrists will see a patient every month. And that’s a visit that probably goes to a new patient. And maybe that’s that, probably not necessary for someone who’s pretty stable. I’d be curious to hear if the agencies are looking for ways to care for more patients. Are they trying to innovate? Expand what they can do or the number of people they can reach.

The burden of cost to families

Health Hats: That’s an interesting one. Doing it differently. Let’s just accept that we don’t have enough bodies. And so more bodies, in a way, is a policy thing. You know how to get people in school. How to pay for school. How to pay people more. Yes. So that they want to do the work.

Bonnie Engelbart: Not just do that work in private practice, but do it for Cambridge Health Alliance or the community mental health center. Yeah. I’m taking care of people who maybe have private insurance. The thing with private insurance is it frequently doesn’t cover the full cost of mental health visits. It’ll cover a percentage. Yeah. Or a specific limit, and then you’re as the patient, you’re left to cover the rest of the cost, and if you’re living paycheck to paycheck, you can’t do that. I’ve had some teens and college student-age kids who are still on their parent’s insurance and haven’t been able to seek the mental health care they need because of copays and deductibles and their parents’ plan. It was too expensive. And to see a therapist every week or two, they just, their families can’t afford that.

Culture and language

Bonnie Engelbart: 65% of the patients in my office don’t speak English as a first language. Oh, my goodness. They would greatly prefer to have a therapist they can talk to directly for standard medical visits; they often will use interpreters and can do that for therapy. But I think it disrupts the process. It’s a very intimate conversation to have had a go-between. I feel can be disruptive.

Health Hats: It’s like a whole other permutation of trust. Suppose there’s this third person in the room who’s translating. Oh, my goodness.

Bonnie Engelbart: So that’s a significant problem in, in terms of patients accessing care. And then culturally, depending on which country patients are from, how they were raised, and their beliefs around mental health, some teens and young adults might have parents who don’t believe in mental health care, or they don’t believe that mental health problems exist. And so, their parents won’t allow them to engage in that care. And the minute they turn 18, they will engage in that care. Because now they’re in charge. Yeah, that’s a whole other issue that I see.

Health Hats: Bonnie, thank you so much. You’re welcome.

Reflection

In this sobering conversation, Dr. Bonnie describes the systems of referral, consultation, and stretching resources created by Cambridge Health Alliance in the face of scarcity of resources. As she says, there are not enough bodies. We see thoughtfulness, frustration, and caring as we peel back and explore layers. I’m taken by the diversity of culture, language, and geography affecting CHA’s solutions. Does each health system across the country strive to create hyper-local band-aid solutions? Could a national policy approach exist to serve emerging adults and their primary care docs for the entire country, or can we nationally support hyper-local strategies? What a messy stew! Want to know more? I suggest the National Alliance of Mental Health: Kids, Teens, and Young Adults, the White House Fact Sheet: Improving Access and Care for Youth Mental Health and Substance Abuse Conditions, and the American Academy of Family Practice (AAFP) article, Managing Behavioral Health Issues in Primary Care: Six Five-Minute Tools. Links in the show notes.

Next, you’ll read/hear/watch a 30-second clip from our next and seventh episode in the series, Emergency Medicine: We’re Not Trained for This.

Next #7 Emergency medicine: We’re not trained for this.

Joel Hudgins: I think we struggle when you turn the ER into more of an inpatient facility and keep behavioral or mental health patients in crisis in the emergency room for weeks. We’re just not great at that, and we’re getting better. But the reality is we’re not docs that train for that. The nurses in the ER did not come with the idea that we’re going to round on behavioral health patients every day. We’re going to do therapy. We’re going to titrate medications. All this stuff is a little bit, not over our heads, but I think it is new to us.

Podcast Outro

I host, write, edit, engineer, and produce Health Hats, the Podcast. Kayla Nelson provides website and social media consultation and manages dissemination. Joey van Leeuwen supplies musical support, especially for the podcast intro and outro. I play bari sax on some episodes alone or with the Lechuga Fresca Latin Band. I’m grateful to you, who have the most critical roles as listeners, readers, and watchers. See the show notes, previous podcasts, and other resources through my website, www.health-hats.com, and YouTube channel. Please subscribe and contribute. If you like it, share it. See you around the block.

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Primary Care: #6 Emerging Adults with Mental Illness

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