This post is a little different than usual, but I thought it would be interesting to write about.
About 10 years ago, I stepped into the role of medical director at DYF. The camp (where I spend a lot of time every summer) was started in 1938 for children with type 1 diabetes. Only 17 years after the discovery of insulin, the idea of taking children with type 1 diabetes into the wilderness was revolutionary. Most children spent their summers in the hospital. The women physicians who started the organization were trailblazers. Since 1938, there have been three medical directors (including me). To say I felt apprehensive stepping into the role would be an understatement. My predecessor was in the role for decades, a mentor to me, constantly innovating, and seemed larger than life. I had significant concerns I could live up to her. When I started in the role, my overriding concern was that I’d screw it up.
I figured that the best way not to screw it up was to try to understand intellectually what made camp work in the first place. What was it that made camp feel special—not just for me, but for generations of campers, families, and staff? In my fear of failing, I looked for something to hold onto—something solid to guide me. I thought that if I could put a name to The Bearskin Magic, I could avoid doing harm. So I asked, listened, and thought about it. What emerged wasn’t a formula, but a set of themes—three elements that seemed to sit at the center of what made camp feel like home.
Camp is special because it is a place where people grow in their knowledge of diabetes. It is a place where people find community around living with an isolating chronic condition. And it is a place where resiliency, the ability to get through difficult times and navigate adversity, expands. I started calling these three things– knowledge, community, resiliency– the three legged stool. As I talked with people about them, I came to believe that they are core not just to camp, but to managing chronic illness more broadly. Whether talking about addiction, rheumatoid arthritis, or HIV, it’s difficult (maybe impossible) to manage chronic illness long-term without each leg of the stool. I give a talk on the three-legged stool pretty often—still waiting on my TED invitation, but I’m ready when they are.
I’ve thought about the three-legged stool—knowledge, community, resiliency—as essential to managing chronic illness for years. It’s something I’ve taken out of the camp context, and woven into the rest of my work in the clinic. But I hadn’t seen camp itself as a model of care until this summer. That idea came into focus when we hosted a group from Partners in Health, a global health organization I deeply admire. One of the visiting nurses, from Rwanda, had just run their first camp for kids with diabetes and rheumatic heart disease. They were here to learn how we structure family programming. The Partners in Health folks remarked, “Camp is such a great model of care.”
I’ve been thinking about that phrase now for weeks. Model of care. In medicine and public health, we often have clear data about what helps people live happier, healthier lives, and what is generally not so helpful. For example, colon cancer screening is one of the best, most studied interventions we have. Colonoscopy reduces the risk of developing colon cancer from 1.22% to 0.84%, and reduces the risk of colon cancer death from 0.3% to 0.15% over 10 years. This translates to somewhere between 4-28 colon cancer deaths averted per 1000 adults screened over a lifetime. We spent extraordinary amounts of time, effort, and money making sure we get people screened (the actual method is less important than getting screened). This is absolutely what we should be doing. There are reams of data showing that it works. Some people have a dramatically different life course because of screening, and the extra time to spend with loved ones is something I celebrate.
We also have large data sets showing that social isolation is associated with a 33% increased risk of mortality, and that strong social relationships improve survival by 50%. Put a different way, if our goal is trying to help people live long, disease free lives, being socially connected is likely orders of magnitude more important than getting screened for colon cancer. But the way we deliver care– the model of care under which we operate– does not reflect this reality.
This story repeats itself over and over. We tend to focus less on the things that matter more, and put more attention on things that matter less. I am not disparaging modern medicine. I’d far rather manage diabetes today than 50 years ago. I’m definitely getting screened for colon cancer. Rather, I wonder how to put the things that matter, for example– social connection, physical activity, and healthy diet– at the center of our model of care. Of the top 10 factors that drive overall mortality, three (tobacco use, alcohol use, and opiate abuse) are functionally about coping with distress, and a fourth (stress management/psychological resilience) is just the mirror image of substance use.
If the goal is to really move the needle on the big drivers of health and illness, what would a model of care look like that dramatically impacts the things that matter? There have been trendy studies looking at physicians writing “prescriptions” for fruits and vegetables. While the idea is laudable, it is hardly the kind of transformative restructuring that is warranted given the magnitude of the challenge. A model that makes a big impact, that makes people take notice, is something else. It might look a lot like camp (though we’d probably want to improve the sleep situation).
Most of what drives our health arises from our social context. How active we are, what we eat, what chemicals we consume, how much we sleep and move our bodies are largely functions of our society and our social context. Our healthcare system is charged with promoting our health, but it often does not feel that way. In most of the world, medical problems are socialized. In America, social problems are medicalized. We bring social issues into a medical system, but the operating system of that model is poorly equipped to treat them.
I teach a meditation class because I see that as part of a better model of care. I work first on building relationships, and second on medical problems because I see that as part of a better model of care. I run a subscription-based private practice because it’s the only way I’ve found to try and create a better model of care. But in spite of this, I can’t help but think that I’m only scratching the surface in terms of the type and depth of change that’s needed. Camp demonstrates that a wholesale re-think of the models of care we operate under is possible– that a better way is possible. I continue to be a part of camp because I see how deeply transformative it is in people’s lives. But as much as I love camp, I also recognize that it is not for everyone, so it’s not the only innovation we need. The point is not to make all care look like camp (though that’d be cool). The point is more radical re-thinks.
Any ideas?
Cheers,
Doc