We Should Stop Calling People Non-Compliant

I'm going to say something that may make some people in healthcare uncomfortable.

I hate the word "non-compliant."

I've hated it for a long time.

I've heard it used to describe people who didn't take their medications the way they were instructed.

People who didn't follow a treatment plan.

People who didn't show up for appointments.

People who continued doing something their healthcare professional had told them to stop doing.

And somewhere along the way, we started treating "non-compliant" like it was a description of the person.

He's non-compliant.

She's a non-compliant diabetic.

She's been non-compliant with treatment.

But here's my problem:

Non-compliant with what?

And more importantly, why is compliance the expectation in the first place?

Healthcare is not supposed to run your life

A healthcare professional can tell you that taking a medication is recommended.

They can explain what the medication does.

They can tell you what could happen if you don't take it.

They can offer alternatives.

They can answer your questions.

They can tell you, "If this were my decision, here's what I would be concerned about."

But at the end of that conversation, you still get to make the decision.

Because it's your life.

Your body.

Your circumstances.

Your priorities.

Your risk tolerance.

Your choice.

You don't become obligated to follow a healthcare professional's recommendation simply because they have more medical knowledge than you do.

Expertise matters enormously.

But expertise does not equal ownership.

What if we called it something else?

Imagine someone has diabetes and their healthcare professional recommends a particular treatment plan.

The person decides they don't want to follow part of it.

Maybe they've thought about it.

Maybe they haven't.

Maybe they're worried about side effects.

Maybe the treatment doesn't fit their life.

Maybe they can't afford it.

Maybe they're overwhelmed.

Maybe they simply don't want to do it.

Healthcare can—and should—explore those reasons.

But instead of documenting:

"Patient is non-compliant with treatment."

What if we documented what actually happened?

"Person declined recommended treatment."

"Person reports they are not taking the medication."

"Person prefers a different approach."

"Person understands the potential risks and does not wish to proceed."

Those statements tell us something useful.

"Non-compliant" tells us that someone didn't do what we wanted them to do.

Those are not the same thing.

And yes, sometimes people make choices we don't agree with

This is the part where I want to be very clear.

I'm not saying every healthcare decision is a good decision.

I'm not saying every recommendation from a healthcare professional should be ignored.

I'm not saying people always have complete information when they make choices.

Sometimes people make decisions that healthcare professionals strongly disagree with.

Sometimes those decisions carry significant risk.

That's exactly why good healthcare professionals should educate, explain, and have honest conversations about those risks.

But education is not control.

A recommendation is not a command.

And disagreement is not non-compliance.

The label can follow someone

This is where the word becomes more than just a word.

If one healthcare professional documents that someone is "non-compliant," that label can become part of how other healthcare professionals see that person.

The next person reads the chart.

Non-compliant.

And now there's a story about this person before anyone has actually talked to them.

Maybe they're difficult.

Maybe they don't listen.

Maybe they won't follow instructions.

Maybe they're going to be a problem.

And suddenly, a person's healthcare history isn't just telling the story of what happened.

It's telling a story about who they are.

That's where I think we need to be careful.

Because a person who declined one treatment is not necessarily a person who doesn't care about their health.

A person who missed appointments isn't necessarily irresponsible.

A person who doesn't take a medication isn't necessarily difficult.

There may be a story behind the choice.

And we should probably hear it before we label the person.

People are allowed to make choices we wouldn't make

This may be the most uncomfortable part.

People are allowed to make healthcare decisions that their healthcare professionals don't agree with.

They are allowed to say no.

They are allowed to change their minds.

They are allowed to ask for another opinion.

They are allowed to prioritize something differently.

They are allowed to decide that a particular treatment isn't right for them.

And yes, they are allowed to make choices that healthcare professionals believe are unwise.

Our job isn't to make every person make the decision we would make.

Our job is to make sure they have the information they need to make an informed decision.

There is a difference.

Maybe the question should be: "What happened?"

Instead of asking:

"Why is this person non-compliant?"

Maybe we should ask:

"What got in the way?"

Or:

"What did they decide?"

Or:

"What don't they understand?"

Or:

"What matters most to them?"

Or sometimes, simply:

"They've decided not to do this. How can we support them from here?"

Those questions leave room for the person to be a person.

Not a good patient.

Not a bad patient.

Not compliant.

Not non-compliant.

Just a person making decisions about their own life.

Healthcare can advise. It shouldn't own the decision.

I don't think we need less expertise in healthcare.

I think we need a better understanding of what expertise is for.

Healthcare professionals have knowledge that most don't have.

That knowledge should be used to educate, guide, warn, answer questions, and help understand our options. But once the information has been provided, the decision still belongs to the person living with the consequences.

Maybe it's time to retire the idea that people are supposed to be "compliant" with their healthcare.

People aren't supposed to be compliant.

They're supposed to be informed.

They're supposed to be heard.

They're supposed to understand their options.

And then they're allowed to make their own choices.

Even when we wouldn't make the same ones.