Blog | Thursday, September 24, 2020

Behind the mask assessing risk in COVID-19: playing risk

It's an earnest game, judging what risks are serious, which trivial, and how to balance them through daily life. Over the past decade or two I have changed how I understand risk (and how I discuss it with my patients). COVID-19 makes a correct approach to risk all the more fraught. Correct, however, is not to be determined by a set of axes, but a breadth of view. Follow along.

For a long time I was absorbed by the topic of risk communication. What is your risk of developing a certain sort of cancer during your lifetime? There is the deadly dull (and inaccurate) monologue of the doctor to patient, presenting one number as if it's the Torah from Mount Sinai (you have six months to live goes the joke, and even today, the horrible experience of some people in their provider's office). More accurate is a spectrum of risk, an estimate which encompasses a range of probabilities. Getting people to understand that is not easy, I mean doctors and patients, because difficulty with understanding numeric information is common among both. There are a wealth of strategies, people doing good work in this area.

Neighboring the topic of risk communication comes a consideration of how people process risks, cognitively and emotionally. Yes, presentation matters, but certain risks loom larger than others; errors of omission can be more significant in our eyes than those of commission. Even if you are presented a spectrum of risks in a way which you should understand, your brain might consider them differently than how the presenter intends. “Cognitive bias” is the watchword of behavioral psychologists, and economists, who believe that nudges—incentives—are necessary to guide us towards a less errant view of our own self interests.

There is so much wrong with this approach, to be honest, and I've only come to realize it after a decade of patient care in nested systems which deny patient individuality even as they grindingly reproduce systemic oppression. The idea of “homo economicus,” that perfect rational being who processes risks and benefits, responding just according to the correct market signals, is not just depressing, and indefensible in the ideal, but doesn't conform to empirical reality either. (Even economists recognize this.) Further, people are different. Understanding how each individual undergoes life in a different way is part and parcel of understanding that individual-level risk is also insufficient: we need to understand how systems, cultures, and regimes of control modify the distribution of risk across groups.

I have come to this realization through my disabled patients, and learning from disabled activists (mostly on Twitter). Imagining risks as additive or multiplicative compared to a “normal” baseline ignores that the baseline is malleable, heterogeneous, outside of individual control, and bent by gravitational fields of economic and social priorities.

The social theory of disability (which comes in many flavors) proposes that society needs to be set up for the benefit of people, not the other way around. Similarly, with regard to COVID-19 (and chronic COVID-19), physicians, and all who care for others, need to alter the pattern in which we demand from the chronically ill that they somehow up-titrate their resilience, toggle to less pain, and generally MANAGE BETTER, by decreasing their risk. “Wear masks, wash your hands, stay inside,” unless you can't, or you don't have the water, or you have to work.

How can we alter these patterns? I don't have a fully worked-out theory, but I imagine someone has plumbed the depths of the soil to find where the roots of ableism and of capitalism derive from a single trunk of productivity. Making more for the sake of more underlies many expectations that undermine the chronically ill and those with less. Thinking that those “over there” are somehow more abnormal (or more normal) than we are limits the possibilities of solidarity.

The solution is not to divorce ourselves from the realms of political and social affairs, adopting a moralist quietism that all will be well if we think positive, but to provide sufficient support for all, realizing that individual risk-balancing differs because of how our landscape has been structured over time.

Chronic COVID-19 will cause much chronic disability, and society needs to fit that. We need to realize that before we again adopt a patient-blaming and symptom-minimizing approach.

Zackary Berger, MD, ACP Member, is a primary care doctor and general internist in the Division of General Internal Medicine at Johns Hopkins. His research interests include doctor-patient communication, bioethics, and systematic reviews. He is also a poet, journalist and translator in Yiddish and English. This post originally appeared at his blog.