Ok you consented. But were you informed?

Healthcare is very good at documenting agreement. Understanding appears to be optional.

If I have to sign an “informed consent” form, I should probably be informed.

Fourteen pages of legal language on an iPad five minutes before a procedure doesn’t count.

There is a strangely common ritual in healthcare where you arrive for something that has been booked for weeks, sometimes months, and only after you have checked in, changed clothes, handed over your health and financial information, answered the same list of embarrassing questions multiple times, and mentally committed yourself to whatever is about to happen, someone hands you a screen.

“Just read through this and sign at the bottom.”

The document is enormous.

You’re anxious.

You start scrolling.

You spot the usual suspects that appear frequently in these forms ironically with zero insight into how likely it is they will happen to you as a result of whatever it is you are agreeing to. Bleeding, infection, stuff you can’t pronounce. Death.

But you’ve got no real framework to evaluate the scary shit you’re reading. Isn’t that what your doctor is supposed to help you figure out?

Paging Dr. House. Or literally anyone.

Next comes several paragraphs written in a dialect that appears to have been developed jointly by 19th century English bloodletters and corporate lawyers with no hope of informing anyone of anything.

Then there are the acknowledgements confirming that everything has been explained to you, statements confirming that you understand the risks, statements confirming that you had an opportunity to ask questions, and somewhere at the bottom, a little white rectangle just waiting for your finger.

Meanwhile, the nurse is standing next to you, usually annoyed, always in a hurry, waiting for the iPad back.

So you sign.

Congratulations. You have been informed.

Well, at least according to your paperwork you have.

The official idea of informed consent is of course, pretty sensible. The American Medical Association describes it as a process where communication between a doctor and patient leads to the patient agreeing to a particular intervention. The patient should receive information about what is being done, why it is being recommended, the risks and expected benefits, the alternatives available, and what happens if they choose to do nothing.

As much as I hate to agree with the AMA on anything, that sounds like a great description of informed consent to me.

The iPad signature is supposed to document that process — even when the process never actually occurs.

Somewhere along the way, the requirement for an honest dialogue has disappeared. The document has become the process. And unless you are lucky enough to receive treatment from a clinician who thinks your judgement matters as much as theirs, you aren’t going to get a fair chance to decide anything objectively.

Because once the paperwork becomes the process, it gets much easier to treat patient agreement as the goal instead of patient understanding. And understanding matters because the patient, not the clinician, is the person who ultimately has to decide and live with that decision.

Despite the “my body my choice” rhetoric, true medical freedom is rare. Clinicians who believe you have the right to accept or reject treatments as you see fit are also increasingly rare. In a world led by principles of paternalism and “trust the science,” it’s easy to overlook the nuisance of informed consent and bodily autonomy because, after all, doesn’t your doctor know best?

One of the things proven during the Covid pandemic is that the medical industrial complex is happy to skim on the “informed” part of the consent process.

Coercion is acceptable. Bullying is acceptable. Compliance is the goal.

And it’s easy to see how this happens. When you start from the assumption that patients cannot be trusted to make their own decisions, paternalism waltzes in easily. And once patients became little more than conduits for moving money through the system, their preferences mattered even less. If your treatment plan follows the recommendation of your professional organization or the CDC, then the informing and the consent are really more of a formality.

But a few crazies like me still think the distinction between consent and informed consent matters quite a lot.

Especially when the thing being authorized involves cutting you open, putting you under anesthesia, injecting a mix of genetic material, toxins and who-knows-what-else into your or your kid’s body, removing part of your body, or doing almost anything else that would get a stranger arrested if you had not agreed to it.

Timing matters too.

When and how a decision occurs changes how meaningful a decision can be. Consider the position you are in when the consent form usually appears.

Sometimes it’s an emergency – sure. But more often, you have known about the procedure for months.

Maybe you’ve taken time off work to be there. Maybe your partner drove you. Sometimes you have been fasting since midnight. You already paid. You have been thinking about the procedure for weeks. Or my favorite, you are sitting inside the surgical center wearing one of those gowns that somehow leaves your ass exposed regardless of how carefully you tie it.

Or perhaps it’s a routine office visit where the nurse pops in and tells you they are recommending a medication, injection, or vaccine you didn’t expect. But you’re there now, so you might as well get it.

Sometimes the pressure is subtle. Sometimes it isn’t. Often it has very little to do with helping you understand the medical decision in front of you.

You wouldn’t want a visit from CPS would you? Do you want your kid to kill their grandmother?

Consent is assumed.

Because the machinery has started moving.

Then someone hands you a document with a complete list of risks that sounds very different from everything you remember your doctor telling you.

After all, didn’t he say:

• this pill is “as safe as Tylenol.” We prescribe it every day.

• the anesthesia is low-risk, and you’ll be home by dinner.

• the procedure is necessary. No big deal. Something we do every day.

• the shot is totally “safe and effective.” Wouldn’t be FDA-approved if it wasn’t.

And after all, you don’t want to end up dead or hurt your child, your mom, or your grandmother.

Don’t you want to do the right thing?

Just. Sign. The. Form.

Technically, you can still say no. But psychologically, saying no has now become a much bigger lift than it would have been two days earlier while sitting on your couch or 2 months earlier in the doctor’s office if you were actually being given a real choice.

Is this how we would organize care if we wanted patients to consider their options?

It seems like how we’d organize it if the goal were to make agreement to whatever we say the path of least resistance.

Even federal guidance for research consent recognizes this problem. HHS says people should have sufficient opportunity to consider whether they want to participate, information should be given in language they can understand, and a signed form by itself does not constitute an adequate informed consent process.

A signed form does not constitute an adequate consent process.

So why does the signature receive so much more operational attention than the understanding behind it? And why are we pretending that checking the box means we did the job?

The real test of informed consent is not when the patient agrees with you. It’s when they don’t.

I’ve had many many conversations with patients at the bedside where I had a strong opinion about what I wanted the patient to choose.

A woman who declined the rabies vaccine after a bite from a wild animal. A nasty kidney infection where the patient declined IV antibiotics I thought he needed. Parents who insisted on giving their 5 year old Tamiflu to manage their anxiety putting him at risk.

Each of these cases I had a bias.

• Take the rabies vaccine

• Use the IV antibiotics

• Don’t give your kid Tamiflu just because they technically meet guidelines.

But it’s not about me, is it? My job is to explain what I believed the consequences of each option were, including doing nothing, answer the patient’s questions, make my recommendation clearly, and then let the patient choose. Which brings me back to the paperwork.

I understand why the paperwork exists. Medicine involves risk. Doctors and hospitals need records showing what was discussed. Memories are unreliable, disputes happen, and there needs to be some evidence that a patient agreed to treatment.

Keep the form, I guess.

I would just like the “informed” part to receive the same engineering effort as the “consent” part.

What I would actually want to know

I do not need fourteen pages simplified into a cartoon with smiling organs.

I can handle serious information. Most patients can.

What patients need is not less information. It’s more and better information. Give me the information that has potential to change decisions. The good the bad and the ugly of all sides.

Tell me what you are planning to do, what outcome you expect, the meaningful risks, how often those risks happen when useful estimates exist, the realistic alternatives, and what happens if I wait or choose to do nothing.

Tell me the risk of doing nothing. Tell me if there are alternatives. Tell me why this particular route is the one that you are recommending over others.

Acknowledge that while you may know more about the medicine, I know more about my values, my priorities, my tolerance for risk, and the life I have to live with the outcome.

Then give me enough time to think about it.

The importance of a risk also depends heavily on the person sitting in front of you. A complication affecting fine motor control has different implications for a concert pianist than it does for someone whose career depends very little on their hands. Medical ethics literature has made this point for years. Information becomes useful when it helps the actual patient make a decision according to their own circumstances.

That requires a conversation, not a form.

It can still be short.

“Here’s what we’re doing. Here are the main risks I want you to understand. Here are your other reasonable options. Here’s what I recommend and why. What questions do you have?”

Five minutes of that would probably inform me more than twenty minutes of silently scrolling through clauses written to survive a lawsuit.

Better still, send the material before the procedure.

If my appointment is on Friday, give me the information on Monday. Let me read it at home, Google the words I do not understand, talk to my partner, write down questions, and arrive knowing what I am agreeing to.

The document can contain all fourteen pages if fourteen pages are legally necessary. Put a plain-English page at the front explaining the information a normal person actually needs to make the decision.

Then, on Friday, ask me whether anything was unclear.

Healthcare already sends appointment reminders, fasting instructions, payment links, parking directions, intake questionnaires and automated texts telling me to arrive seventeen minutes early.

Surely we can also squeeze the actual decision somewhere into that sequence.

Did you understand it?

There is an easy way to find out whether somebody understood something. Could they explain it back to you?

If I am about to undergo a procedure and I can tell you roughly what is going to happen, why we are doing it, what the meaningful risks are, and what my alternatives were, you have pretty good evidence that information actually entered my brain.

If I immediately forget what I signed because I was speed-scrolling a document while a nurse hovered beside me, and a clinician wasn’t there to answer my questions anyway, the signature proves something much narrower.

It proves that my finger touched the screen.

This matters because informed consent comes from a very important idea. You own your body.

A doctor can recommend what they believe is best, and sometimes their recommendation will be extremely strong, but the final decision belongs to the person who has to live inside those consequences.

Even the AMA describes informed consent as fundamental in both medical ethics and law, and centers the patient’s ability to receive information, ask questions, and make a considered decision about their care. The Joint Commission similarly describes informed consent as a communication process and links patient understanding with safer, more engaged care.

That principle deserves a better user experience.

Emergencies are different, of course. If somebody arrives unconscious and will die without immediate treatment, nobody should stand around searching for the iPad. Medical ethics has long recognized exceptions where urgent care has to proceed before normal consent can happen. (Although I’d personally argue most emergencies exist outside of that bucket)

Most scheduled procedures have no such excuse.

We knew the appointment was coming.

We had the patient’s email address.

We had their phone number.

We had plenty of time.

And somehow the most important information still arrived at the moment when they were least likely to absorb it. Unlikely to question.

I would actually like to read my informed consent form. I’d like to use it as a tool to understand my options more thoroughly. Ask my doctor the questions that matter to me.

This is not complicated.

Assume I have the right to make decisions with my own body. Send it to me early. Write the important parts like a human being. Give me the numbers when the numbers are useful. Tell me what my other options are. Give me somewhere to ask questions without feeling like I am delaying an operating room full of people.

Treat me like the person making the decision, not the person whose signature you need.

Then, once I understand what I am agreeing to, hand me the iPad.

I’ll happily sign it.