Some 20 years ago, before I knew I’d have medical troubles of any length, my college job was working for a medical ethicist who was a physician with a grant to study informed consent.
Now, years later, as I have worked my way through institutional resistance to how I may come to be disabled and generally dismissed as a patient, I come to find that much of the skepticism my mother had as a crunchy hippie is now functionally being proved a quarter century on. These uncomfortable trends drives skepticism in even the most informed minds. And most patients can only ever be expert on their symptoms.
This comes at the end of a crisis of communication about the value of public health and personal responsibility in a community. Many people did not feel that they were given adequate consent and no longer trust anything said by doctors. Would most medical professionals agree they had informed consent? I think most argue they were. I agree.
Now of course we’re all desperately trying to prevent harms here and patients more than ever feel that, as they don’t trust what’s coming to them because we’ve not effectively decoupled population-level information from the individual human behind a given case. Is that informed consent? Yeah as best we can do it.
Now how does research play into all this? I also happen to have the misfortune of having working on the early years of on one of the worst medical misinformation spreaders in all of healthcare. I say this lovingly: it is Gwyneth Paltrow.
Now if you root around Twitter, you will find commentary about how the supplements hawked on Goop and the supplements hawked on various right-wing sites are functionally identical. But she got a lot right because she is a rich well connected white woman with money. So again who is informed and to what degree?
Unfortunately some of the things that are sold as treatments or supplements they sell are real and have proven out. We’re working our way through the science on our gut biome, infection and its links to preventable autoimmune diseases, and any number of other previously heretical paths.
But we’ve really not transformed the way we process our information on what we know and what is actually considered best practices. The gap is very wide. Like a chasm. I am way outside the norms because I fucked myself up believing I wouldn’t be a statistic as it mostly worked for most women.
So I live with issues. But do I think that people have a right to experiment with what we think might be snake oil? Absolutely. Everyone calculates their own risk. Heck Sarno is just one giant placebo doctor on letting go.
We know that some of the avenues of exploration will prove to be placebo effect if they work. And we still somewhat trust things that are actually going to cause harm aren’t really making it into the popular press and mass consumption unless there’s some evidence. I sort of believe that to be true.
More people should feel that they have the right, if they have informed themselves over a period of time as patients, to work around the system if they make no progress despite best efforts and years of work.
There’s just a lot to balance on being informed about your conditions and your capacity to manage your own health that is up to you. I think that generally speaking the paternalistic attitude has not produced superior outcomes.
And the quality of care I get as someone who can pay for health care anywhere in the world, it is galling to me that the gap between what we know and how far we can go in practice is so wide.
So let the guy advertise the doggy cancer vaccine because at least it’s teaching people that we have solutions to more than they know. They can judge risk reward and be a little bit strange. Humans are humans.
You get to decide it based on your own understanding of your own life and you get what you get. I was disabled by my own misjudgment of informed consent on treatments recommended by a COO of a major company who paid to have as a perk to her workforce. Egg freezing was an approved elective procedure that everyone was on board with ten years ago.
I was informed. I consented. I got it wrong. Now let me see if I can fix it in my own manner of choosing. And I won’t trust mere authority next time. Neither celebrity nor pharmaceutical company is to be trusted.
