Why do so few medical trainees want to work with complex kids?

Photo of Jacob Trossman, 16, who has Pelizaeus-Merzbacher disease. You can read about Jacob and his family on his mother Marcy White's blog Cure PMD.

By Louise Kinross

Earlier this month JAMA Pediatrics ran a Viewpoint about why it’s hard to attract medical trainees to care for children and adults with neurological impairment. These are children with complex medical needs that stem from conditions like cerebral palsy or traumatic brain injury, or elderly patients with Alzheimer’s or other types of dementia.

Dr. Jay Berry, a hospitalist who works with children with medical complexity at Boston Children’s Hospital, and his wife Dr. Sarah Berry, who cares for elderly nursing home residents through Beth Israel Deaconess Medical Center, suggest a number of reasons clinicians may have an implicit bias against these populations: neurological impairment isn't curable or diagnostically interesting, it requires an enormous amount of time, and many specialists, to treat, and insurers in the U.S. do not reimburse well for it.

BLOOM wondered if there was a more basic bias against people with cognitive disability at play, even though not all children with medical complexity have intellectual disability. We interviewed Dr. Jay Berry.

BLOOM: Can you describe your work?

Dr. Jay Berry: Our group has primary care for about 3,500 kids. Most of my clinical work is as a hospitalist, so I primarily care for kids when they’re inpatients. I also run a perioperative program where we work with the surgeons and anesthesiologists to prepare kids from our complex care program for high-risk surgeries such as spinal fusion, and follow the kids after surgery in hospital. Research grants fund 100 per cent of my time, and I spend about 20 to 30 per cent of my time caring for kids.

BLOOM: Why did you choose this field?

Dr. Jay Berry: I had a pivotal moment as a med student when I was rotating through a pediatric pulmonology rotation at a children’s hospital. I thought I was going to learn how to take care of kids with cystic fibrosis and congenital brain malformations. But most of the kids we saw were children with neurologic impairment who had had big orthopedic surgeries and were taking a long time to heal.

I asked about that: ‘Why do we have all of these kids?’ And I was told: ‘Sometimes these kids fall through the cracks. The orthopedic surgeons are thinking about hips, and the neurologists are thinking about seizure management, but pulmonologists want to see how everything fits together in the context of a child’s neurologic impairment. We want to wrap our heads around the entire child, to best help them.’ That was compelling to me.

BLOOM: How do you describe severe neurological impairment?

Dr. Jay Berry: Whatever is going on in the neurological system is severe enough that it’s affecting major functions such as walking, talking, breathing, digesting food, using hands and sometimes thinking. It interferes with their quality of life and being able to do what they want to do.

BLOOM: Do the children you see speak, or have a different way of communicating?

Dr. Jay Berry: Some children have fantastic expressive speech and others use augmentative communication devices or other ways to assist their speech. We also have children whose parents are amazing at picking up on the nuanced way the children communicate through eye movement and blinking and facial expression.

BLOOM: So some of the children are cognitively intact?

Dr. Jay Berry: Yes. We could have a child who is trached and vented due to neuromuscular impairment who is cognitively normal. One of the reasons we wrote the piece, for providers who aren’t familiar with this work, is because every kid is different really. We misjudge these kids when we lump them all together.

BLOOM: You say in your piece that there’s a miniscule number of doctors trained to work with these kids. How do their families find care?

Dr. Jay Berry: Unfortunately, the system isn’t proactive enough to have an intake system across the country where if I have a kid with neurological impairment in rural Alabama, we tell the family ‘We need to get you plugged in with these local guys.’ It’s often word of mouth and parents talking to parents. What happens most, which is not ideal, is families that are diligent say ‘I’m not going to stop till I find a provider who will care for my child,’ and eventually they find folks with experience. But it’s very haphazard.

BLOOM: So the ideal is to have a doctor who follows and coordinates the big-picture care of a child, but when families don’t have that, they may be going from specialist to specialist?

Dr. Jay Berry: Absolutely. I would hypothesize that maybe even the majority of families have that experience. If you’ve never had someone who's thinking of the entire picture and making sure all of the providers work in a concerted effort, you don’t know what you’re missing.

BLOOM: You suggest people aren’t attracted to this work for a variety of reasons, including that there isn’t a cure.

Dr. Jay Berry. I think so. We need a shift of mindset. It’s part of the human personality to want to be problem-solvers. There’s a sense of: ‘I can find a problem in five minutes. If it’s an appendix, I can take out your appendix. I’m done.’ With chronic disease it will never go away. What we need is another type of problem solver who says ‘We may not be able to solve this problem, but I can work with you on it, even if that takes decades, and help you, and I’m not going away just because we can’t fully tackle what’s happening with your body.’

It’s the ‘long-term-ness’ of this relationship that allows you to be more knowledgeable and a better clinician for the child. You keep learning more as time goes on. This holds true even for inpatients. Most of my work is taking care of kids when they’re hospitalized. But these kids are hospitalized so frequently I could see the same child four to five times a year. Having that memory and that experience—of last time we tried this, and it didn’t work—that continuity, is important.

BLOOM: You note in your piece that clinicians may not work with kids with medical complexity because they don’t find them diagnostically stimulating. What disease is?

Dr. Jay Berry: In pediatric training, it would be a rare, acute disease, like Kawasaki disease. It presents in an interesting way. The symptoms come together, but are subdued at first, and you have to recognize them. When you do, and the diagnosis is made, you know exactly what to do, and the disease is gone.

BLOOM: Is it something about it being rare that makes it interesting?

Dr. Jay Berry: Yes. A lot of pediatricians are drawn to pediatric disease because in the adult world you’re dealing with a lot of high-blood pressure and diabetes, and children tend to have more rare things that can pop up, and you have to have your radar on all the time. But if you have a new infant that joins a practice after being in the NICU due to a hypoxic event at birth, they go on to have cerebral palsy. There’s a sense of ‘I know what happened, they have CP, that’s never going to change.’

BLOOM: Why is treating kids with medical complexity not well reimbursed by insurers?

Dr. Jay Berry: Our U.S. health system is still based largely on a fee-for-service model. You’re incentivized to see large numbers of children in an outpatient clinic, as fast as you can. Reimbursement from private and government payers tends to be less for children than adults. As outpatient pediatricians, we struggle with paying the electricity bill and keeping enough revenue generated from payments to keep our nursing staff. I could see six kids over the next hour with ear infections, or I could see one child with CP who is coming in with respiratory distress, who will take me an hour, or even longer, to try to figure out what is going on. But I won’t be reimbursed the same for seeing the kid with CP.

BLOOM: In your article you mentioned discriminatory events towards children with medical complexity in the U.S. Were you speaking about cuts to Medicaid?

Dr. Jay Berry: No. We were thinking about disparities in health care, and in life, based on race and ethnicity.

BLOOM: So sometimes families can’t access the care they need based on race?

Dr. Jay Berry: Yes, we do see that, which is really troubling. There’s a lot of emotionally charged thinking here around race and ethnicity. If you throw the interaction of race in with neurological impairment—those kids may be the most vulnerable to not receiving the care they need.

BLOOM: Because they have two biases against them?

Dr. Jay Berry: We have areas of the U.S. where outpatient pediatric practices will not accept any patient using government insurance. They will not enroll any of these children in their practice. You may be a child that has CP and needs a lot of ongoing care, and it’s a double whammy.

BLOOM: Separate from some of the other disincentives to working with children with medical complexity, is there a more basic bias against working with people with mental disability?

Dr. Jay Berry: I think you’re spot on. That gets back to our earlier discussion about out how some people lump all children with CP together, and make judgments before assessing what cognitive capacity they have. Or they may be thinking—‘they’re in a wheelchair, and it will take forever to get them into my office, or I can’t get them on the table to examine them.’ Or ‘it’s going to be hard to assess what’s wrong if they can’t communicate, if they can't tell me.’ All of these things make people apprehensive to care for these kids.

BLOOM: Do they ever have discussions in medical school about why people want to go into different fields? I think if someone listed off the concerns you just did, which are really prejudices, some students would start objecting.

Dr. Jay Berry: There’s so much curriculum to cover in medical school. So much of medical school and residency is acute care, and trying to wrap your head around the treatment for an acute condition. If you upfront said to students: ‘Let’s discuss why you have an affinity to work with certain kinds of patients.’ And then after hearing what they said, asked ‘Is it okay to have those perceptions? Are they accurate?’ I think some would say ‘I’ve never thought about it that way, and I don’t want to practise medicine that way.’

There has to be some kind of wrap around to challenge trainees to think about being comprehensive in caring for kids with complex needs—to think about all of the child’s health needs and how to be a team leader with health providers.

BLOOM: How are relationships with your patients different from those doctors have in acute care?

Dr. Jay Berry: Over time, they become so much richer and deeper than on the acute-care side. However, there’s a ‘high’ you feel on the acute side, an instant gratification when you can help someone really quickly. It’s very attractive.

Over the long-term with a family with a child with neurological impairment, it’s inevitable that some not so positive things will happen—either physically, or the health system will let them down, or I will let them down.

We try to be proactive about that, to have conversations with families where we mention some of the things that might happen. Even though the families obviously aren’t happy when they do, they tell us ‘We respect you for being transparent, and telling us this was a possibility.’ That takes our relationship to another level.

Treating acute differences is kind of like having an incredible first date, and having a long-term relationship with a family with a child with neurological impairment is more like having a marriage.

BLOOM: You said in your piece that clinical research about complex kids is lacking. What’s an example?

Dr. Jay Berry: If we look at the perioperative care we’re doing here, where we have the structure of having a person who is in charge, and managing the care for these complex kids, does that make a difference, and can we quantify that difference? That entire body of literature is almost non-existent.

BLOOM: So you mean make a difference in family satisfaction or patient outcomes?

Dr. Jay Berry. There is some literature to support that. But having the funding support to be able to do health-system type interventions, the methodology to conduct these studies is very tricky. It would be difficult to randomize children with scoliosis with whether they got a spinal fusion or not. You can’t double blind people to that, and ethically it wouldn’t fly. But when we look at the decision to undergo major spinal surgery for kids with scoliosis, we don’t know what happens to the kids whose families decided not to do that. Something as basic as that we don’t have.

BLOOM: Why is it not as attractive to fund this kind of research?

Dr. Jay Berry: From a funding standpoint, it’s not as attractive to say ‘We’ll invest $50 million to really advance decision-making for spinal fusion with kids with scoliosis,’ as it is to say ‘We’ll invest in basic science research to discover a gene that will prevent scoliosis.' It’s easier to migrate towards the sexier things.

The health care costs for children are miniscule compared to adult patients, so kids are already kind of at the side of health care. And now we’re talking about a small population with neurological impairment who need a nuanced surgery—they’re not on the radar.

BLOOM: We interviewed Dr. Eyal Cohen at SickKids about his study using a Danish registry that showed mothers of children born with major anomalies had a 27 per cent increased risk of death when compared with mothers of children born healthy. How well do we support parents of children with medical complexity?

Dr. Jay Berry: Not well. I think we struggle so much just to find the time to take care of the kid's physical health, and if we get that okay, we’re hopefully addressing the child’s mental and emotional wellbeing. And then, if there’s time left over, we think about the parents.

What we’re seeing here with Eyal is so much unfortunate loss of employment, financial struggles, marital discord. There are so many huge things the families are facing, in large part because we tend to throw so much back on the parents.

BLOOM: Our families have a lot of problems with getting home-care nursing, so often they don’t have enough night nursing hours or the nurse cancels and there’s no backup. So at a practical level, if parents aren't getting any sleep for days and days, it’s hard to be able to function, let alone be happy. But I guess what you’re saying is that you have a hard enough time supporting all of the needs of the children.

Dr. Jay Berry: Not supporting the parents it is an atrocity. You’re totally right. It’s just bandwidth, and if I find a parent who’s struggling, what can I do to help them? It’s really challenging to help them solve their problems, and get their lives in shape. It’s ridiculously difficult.

We do find our palliative care team can be very effective in helping families navigate through that space, and we work a lot with them to get that going.