Daniell Ofri writes in Covid Vaccination, The Last Mile, that “The COVID vaccine engenders a unique obstinacy that seems to blot out conversation. We doctors and nurses are exhorted to listen to our hesitant patients and hear their concerns, but this is difficult to do when patients don’t even want to talk.”
Which begs the question: Is conversation with a doctor the right way for patients to become informed about their health risks? Since Warner Slack’s declaration of the patient’s right to decide, in the 1970s and perhaps even earlier, a prevailing answer has been YES. Clinician’s and patients are meant to collaborate in problem-solving and decision-making, in order to optimize health outcomes.
The practice of participatory medicine is based on such collaboration, but I wonder if it should be. My trusted advisor Merriam-Webster says that to collaborate is “to work jointly with others or together especially in an intellectual endeavor.” If it is nothing else, a conversation between a doctor and a patient is an intellectual endeavor. It’s a candid, probing, and nuanced negotiation that involves exchanging ideas and making agreements. Is either participant in that conversation normally qualified to have it?
By virtue of their training and experience, clinicians are purportedly qualified. Because of institutional, legal, and emotional constraints, they often are not. They typically don’t have the time or curiosity for intellectual endeavors with their patients. Their expertise is largely formed, not forming. They are doers rather than teachers, fixers rather than investigators. Probing the muddled mind of a patient is unlikely to improve outcomes, and may make them worse.
Patients on the other hand are dreadfully ignorant, untrained, inexperienced, opinionated, myopic; “obstinate” yes, but maybe a kinder way of putting that is self-determined. Many don’t like being told what to do; they don’t like the rigidity of a diagnosis or prognosis that’s been foisted on them out of nowhere; their default position is “I am different”; and they love being in control. And why not? Aren’t they customers in all healthcare transactions? Aren’t they paying, through taxes or an insurance premium or out-of-pocket, for services? Isn’t the customer always right?
When the customer is a patient, the customer is usually wrong. And that is as it should be. They don’t know science. They don’t know medicine. They don’t even know their own bodies and minds beyond what’s visible in a mirror. They are unqualified to collaborate with clinicians and, for different reasons already mentioned, clinicians are unqualified to collaborate with them.
Humaginarium has thought about this conundrum and come up with an elegant solution. At least a partial solution that gets some of those “obstinate” (untutored, unmotivated) patients to a point where they want to talk to experts like Dr. Ofri.
Our solution is health simulation, in which patients get to play doctor, and play scientist, and play patient, all in a fantasy world where nothing real is at stake. In our health simulation, players aren’t told what to do, they’re asked. Players aren’t told what they have, they’re nudged to find out. Players aren’t threatened with consequences of not squashing morbidity, they experience the consequences of their own decisions and failures to act fast enough. If they get sicker in the simulation, they can go back and try again. If they die in the simulation, they can wipe the slate clean and start over. Better luck next time. Practice makes perfect.
Our solution has roots in the playground, where kids like to play doctor. Our simulation is not for kids though; it’s for adults who have to cope with serious chronic illness in real life. That’s about two-thirds of everybody. Playing with serious health conditions in a digital sandbox, working out the determinants of one’s health, is the right way to acquire a constructive outlook. As in: “I’m beginning to understand what happens, in and around a person, when they’re sick like me; I can practice dealing with this in a video game simulation where it’s fun instead of scary; I can enjoy the feeling of being in control, at least in my imagination; I can take my fantasy of overcoming disease back to real life and see how it works there.”
When our simulation gets done with recalcitrant patients, the next time a doctor like Danielle Ofri offers to hear them talk, there is more likely to be a genuine, two-way conversation that looks a lot like intellectual endeavor. You know what I mean?