Performing Medicine

"She needs you to do better," the paediatrician said, eyebrows raised in a sanctimonious arch. The young mother's mouth opened, but she said nothing as she held her baby girl. The doctor clicked her pen closed, leaving the clinic room. The mother, silent, stood still, enveloped in shame.

The woman had gone to seek help for her daughter's relentless cough. Recently, she had left an abusive man, become homeless and ended up living in a mold-infested apartment. The doctor had advised her to move, and to keep her child home from daycare to rest. Both of these suggestions were impossible, almost laughable, for this working mother living in poverty. She went for help, but was given advice she couldn't follow, served with a side of crushing judgement.

This is a fictional scene from the Netflix series Maid. But, unfortunately, it depicts the reality about how some of our most vulnerable patients are treated in our healthcare system.^1,2 We have all been that pen-clicking doctor.

As a community paediatrician, parents bring their children to me for a variety of issues. Whether it's ADHD, anxiety, aggression, obesity, or insomnia, the treatment plan almost always includes lifestyle changes.³ These recommendations are evidence-based, and very easy for me to endorse. However, the longer I practice, the more I wonder how possible, or impossible, my advice is for families to follow. What's more, I now consider more often how this might make my patients feel. How does this affect our relationship?

This fictional case is emblematic of what I routinely see in my office:

A single mother on social assistance sits in front of me covered in bruises from her autistic son's (let's call him Tom) incessant pinches and punches. Tom is old enough to be eligible for pre-primary but his mother doesn't feel comfortable having anyone else care for him. She worries he will hit the teacher and/or other children. She rarely takes him outside or to any play groups for the same reason. He screams when he is left with any other caregiver. Therefore, she never has a break. His only source of protein or iron is McDonald's chicken nuggets. Otherwise, he almost exclusively eats Goldfish crackers. Tom is chronically constipated and has overflow incontinence, which he sometimes smears on the walls of their apartment. He only sleeps if she is laying down next to him. Even with her there he wakes up every two hours. She sheepishly tells me that watching videos on his tablet is the only thing that calms him. This is how he falls asleep and the only way she gets a break in the day. She estimates that Tom has about six hours of screen time a day.

The evidence-based playbook for Tom is straightforward: sleep training, reduce screen time to under two hours daily, dietary diversification with protein and vegetables, and behavioural interventions for aggression.³

These recommendations aren't wrong. They are thoughtfully researched and neatly packaged into bullet point guidelines. They would help Tom.

They're also impossible.

When I give advice to a patient that they can't follow, I'm not helping. I'm performing medicine. The chart will say I made a plan: counselled on nutrition, sleep hygiene, and screen limits. Gold star! But what actually happened is I transferred my helplessness onto the mother as shame.

When I started my paediatric residency in the early 2000s, Canada was seeing its sharpest rise in childhood obesity. Almost every paediatric hospital across the country was trying to find ways to tackle this issue that seemed scarily out of control. There was a panic in the air. The news was reporting that this generation of children—for the first time in history—will have a lower life expectancy than their parents because of inactivity and obesity. As the doctors caring for children we felt a great responsibility to change this trajectory.

Many of my preceptors, who were kind, caring doctors, would tell us to show the growth charts to all of our patients who were in the obese category no matter why they were in our care. We emphasized where they were on the curve compared to where they should be. Then we would give a long list of lifestyle changes and rules to follow. No pop, no juice, no 'junk' food, exercise at least an hour a day, watch less TV, etc.

The interventions we were taught to push actually worked at a population level. A CMAJ study showed that between 2004 and 2013 childhood obesity decreased from 30.7% to 27.0%.⁴ However, the picture was much more complicated. That study didn't adjust for socioeconomic status. When researchers did look at income, they found that low-income children had nearly fivefold higher odds of obesity.⁵

We felt, and were told, we were negligent if we didn't take the childhood obesity epidemic seriously. But we weren't treating populations. We were treating individual children, many of whom lived in poverty. For them, the same advice that worked on average became another reminder of what they couldn't afford to change.

Fast forward about 15 years when I was the paediatrician in a pilot project for the treatment of obesity. The kids were all very different. Different ages, different cities, different abilities, etc. But other than their high BMIs the common denominator was poverty. The project was only six months, but I learned a lot during that time. The biggest lesson was that these families were trying much harder to be 'healthy' than almost anyone else. Certainly harder than me, whose kids have always been rail thin despite my lack of effort. The families were also knowledgeable about how to lose weight. I didn't need to tell them to eat more fruit and vegetables, to exercise more, and to decrease sedentary activities like screen time. They knew.

Tom's mother knows too. She knows screens overstimulated her son and that McDonald's nuggets aren't ideal nutrition. She knows that he needs to sleep independently. Telling her what to do won't help. She already knows, the problem is that it's not possible.

This is the fundamental disconnect: evidence-based medicine is built on population data, but practiced on individuals who may bear little resemblance to the average patient in those studies. The guidelines tell us what works on average.

The art of medicine is deciding when your patient is the exception.

Almost every physical and mental health related modifiable risk factor (obesity, smoking, physical activity, diet, alcohol consumption, stress) is associated with socioeconomic status (SES). We act as though SES is itself modifiable at the individual clinical level. For children in my office it is not.

So what should a physician do for patients like Tom? For children with obesity? For all the people not following the recommendations we have so carefully researched?

For some families, usually the high SES families with resources, reviewing evidence-based recommendations would be very valuable. However most of the families I see do not have those resources. Guidelines are written for families and patients with choices.

The paediatrician in Maid was following evidence-based guidelines. Mold is causing respiratory issues? Move to a home without mold. Easy as that. This is what the research says.

Instead of being the pen-clicker and giving Tom's mother my well-intentioned list of to-do's, I could ask her, "What is least bearable?"

"The hitting," she says, without hesitation.

Together, this is where we start. We discuss the options. There is a scarcity of resources for children on the spectrum, and we review what's available and what's not. What interventions she thinks she could do and what she knows she couldn't. We discuss medication. I listen more, lecture less.

At our follow up visit three months later, Tom's mother tells me it's better. He is still hitting, pinching, and punching her, but less. She has some strategies now. Tom still sleeps with his mother and eats nuggets and Goldfish and watches too much Youtube. But his mother seems lighter. She's talked to the school and will start sending him for a couple hours a day.

There will be many ups and downs in the years that I follow Tom. The wins will be small and the challenges will be constant. He may never eat a vegetable, but might love school. He will always spend too much time on his tablet, yet will eventually learn to sleep alone. His aggression will lessen, and then intensify again when he hits puberty. His mother will worry about how big and strong he is getting. Things won't be easy for her. But because of the way I listen, validate and give advice practical for her, she will know she isn't alone.