This post was written by a Family Medicine Doctor serving rural America. They have a Master's Degree in Bioethics and a medical degree.
They believe in you.
I want to talk about informed consent for a bit. You’ve probably heard of this idea. It’s a good one. It’s one of those ideas that wasn’t always there, but which came about by the work of good people as the arc of history bent toward justice- just like we hope it is supposed to.
Doctors used to be trusted implicitly. We could just do whatever we wanted. Y’all, we wouldn’t tell you that you had cancer if we thought it would upset you too much. We wouldn’t reveal all the risks of a procedure when we just wanted to cut people open and get famous or feel powerful. You see how this is all a little paternalistic and just no good? How it’s kind of abusive, to hide information and then invade people’s lives and bodies? This injustice became of particular interest in the mid-20th Century, once we discovered what the Nazis were up to with their experiments on human subjects. People were pretty pissed. People wanted to prevent that insanity happening anymore, in any form. The idea that the individual should have the final say on what happens to their body only became really important to medical science because we saw the worst-case scenario- where there was zero value placed on human autonomy. Informed Consent was written into the Nuremburg Code of research ethics, and it is a guiding bioethical principle that every doctor and patient should understand. Seems simple, but it’s not always. Here’s how it works:
First, the patient or subject needs to be informed about their options in very specific ways. They need to understand the diagnosis, they need to understand the tests, they need to consider the risks versus the benefits of various treatments, they need to understand what will happen if they do nothing, they need to consider what all this means in terms of their personal goals for their quality of life. Understanding all of this is simple enough when the patient is a fairly literate, sane adult. It’s less easy when the patient is a young child, or when they’re flying high on meth, or when they have dementia, or bleeding out, or when they’re unconscious, or, more upsettingly, when their doctor just doesn’t explain it very well or even at all. I won’t get into those specific scenarios, just realize that it’s not always black and white in terms of how well, or even if, a patient really understands the information needed to make a decision.
Then, given all the information, competent patients or their proxy decision-makers need to give permission for doctors or researchers to do stuff, or, alternatively, they need to specifically refuse certain treatments or tests. They need to decide for themselves. They need to make that decision based on their own values and priorities, not mine, not the prevailing social norms.
And there you have Bioethics 101: Informed Consent and Autonomy in a Nutshell. Personal choice matters and should be respected, but it only works when that person knows what they’re getting themselves into.
That’s where I come in, as a physician.
The best doctors are educators, first and foremost. I try very hard to make sure my patients understand the science and the ethics behind everything I do and everything I recommend to them. And if they decide they don’t want to take their insulin or they don’t want to get their mammogram or they refuse to quit smoking, I don’t argue with them saying that it’s a dumb idea (even if I think it’s really, really dumb). If it’s so important to their happiness that they ignore my advice, that’s fine, as long as they understand the consequences of their decision. If I’ve done my job as an educator, then I sleep just fine at night no matter what.
The relationship I have with my patients is obviously much narrower and more individualized than the relationship our government has with its citizens – the issues are fewer, the choices simpler, the evidence relatively clear, the consequences of any choice is limited to typically one person. I would argue that casting a vote requires just as much informed consent. And my fears are these: either those who voted for this administration didn’t know what they were doing and what it would cause, or, they knew exactly what would happen and they are happy about it because they do not care about vulnerable people in this country or abroad. They do not care about this planet, and they do not care about Science or empiric truth. Both of these scenarios scare the crap out of me. The latter, the “just an jerk” scenario, I guess, can’t be helped. But, friends, we can help to fight ignorance. We can do our very best to make knowledge more powerful than ignorance in the next election cycles.
This president played to the ignorance and the base emotions of many American citizens – those who voted for him, no matter why they voted for him, bought the snake-oil he was selling. “I am the miracle cure,” he steadfastly proclaimed, lacking little knowledge or evidence, and then he called bullshit on the many people who cited sources claiming otherwise. He was just up there crying “fake news!” at those who disagreed with him, and voters totally bought it. Nothing seemed to matter. Not the expertise or experience of his opponents or his critics, not the complicated nature of the problems and issues at stake, not the risky side effects, not the inevitable consequences.
He was a simple answer in crazy, scary times. I get it. I see it often. People want the miracle cure. People don’t want to face a tough decision, sift through information they may not understand, seek advice from experts and have that advice conflict with their ideas. People don’t stop to consider that sometimes the cure is worse than the disease. Informed consent doesn’t work when people are only considering or valuing limited information, or when they’re making decisions based only on emotions. Informed democracy can’t work, then, either.
This administration hasn’t yet engaged in Nazi-style human experiments, that we know of, I guess, but they don't seem to value autonomy and informed consent. For one, they seem pretty upset when the National Park Service tweets about climate change, so I can guess they’re going to be comfortable suppressing information they don’t like, information that doesn’t benefit them or their cronies, information that challenges their authority or risks someone voting for the other party. It’s not good.
They can see the evidence and decide they’re happier without it? NO to that. They don’t even want us to participate in the process of informed consent? NO to that. Any doctor who tells you what to think doesn’t care about you. Any government that does the same doesn’t care about you, either.
Because you cannot make an autonomous decision if you do not have the information available to you to make that decision.
Stay informed. Even if it’s hard, even if, sometimes, the information you find is upsetting or challenging. Try to inform others, and leave emotions out of it as much as you can. Ask an expert or two when you’re stuck. Read multiple sources, check facts as much as possible. Admit when you’re wrong, admit when you hear a perspective you hadn’t considered. Know that even science doesn’t have all the answers, but it’s still a pretty good method for trying to find objective truth, if you’re into that sort of thing. Listen to the hard scientists, the social scientists, the artists, the economists.
But I, for one, am entirely done listening to the businessmen, the charlatans, and the quacks.
Seeds for Action
Seeds for Action is a Philadelphia based cohort focused on taking the barriers out of social justice and activism and translating the emotions of the last election into accessable dire