Is a Diagnosis as Innocent as It Appears?

What happens when medicine names what is wrong with us—and we believe it?

A diagnosis can save your life.

It can also change it.

Sometimes before the treatment has even begun.

I have been thinking about diagnosis lately—not one diagnosis in particular, but the extraordinary authority contained in the act itself.

You walk into a room with symptoms.

You leave with a name.

Cancer. Depression. Dementia. Diabetes. Anxiety. An autoimmune disorder.

Before the diagnosis, there may have been pain, fatigue, forgetfulness, a tremor, a lump, or simply the persistent knowledge that something is not right.

Then somebody names it.

And somehow the naming changes things.

A diagnosis does not remain in the room where it is given. It follows the patient home.

This is not an argument against diagnosis. Diagnosis is fundamental to medicine. It can explain what has been frightening or mysterious, lead to treatment, provide access to specialists, and prevent further harm.

But diagnosis is not infallible either.

The National Academies has identified diagnostic error—including inaccurate and delayed diagnoses—as a serious patient-safety problem and concluded that most people are likely to experience at least one diagnostic error in their lifetime.

So perhaps we should be a little more comfortable asking: Are you sure?

Yet something about those three words can change the atmosphere in a doctor’s office.

Questioning a diagnosis can feel remarkably similar to questioning the doctor.

And those are not the same thing.

If uncertainty is already part of medicine, why should uncertainty expressed by the patient be regarded as troublesome?

Perhaps because diagnosis involves something other than knowledge.

It involves authority.

THE MIND ENTERS THE EXAMINATION ROOM TOO

There are people who believe deeply that the mind influences the body. You hear phrases like what you think about, you bring about. I would not take that so far as to suggest that people think themselves into serious illness or can simply think themselves out of it.

That becomes dangerous very quickly.

It turns illness into a failure of optimism.

But it would also be wrong to pretend that expectation has no effect at all.

Medicine has studied what is called the nocebo effect: negative expectations associated with a clinical encounter can contribute to negative symptoms and treatment experiences. In other words, what patients are told—and how they are told it—can matter.

So belief is not medicine.

But belief is not nothing either.

That makes me wonder about the psychological weight of diagnosis itself.

What happens when someone with considerable authority tells another human being: This is what is wrong with you. This is what will happen next. This condition is progressive. There is no cure.

The disease may have existed before the conversation.

But the knowledge of the disease begins there.

Then the diagnosis comes home.

It enters Google searches and family conversations.

It can enter the way someone interprets an ache, a forgotten word, or an ordinary bad day.

It may enter the way other people begin treating that person.

None of this means diagnosis creates disease.

It means human beings do not experience illness separately from meaning.

And words spoken with authority have meaning.

BUT WHO GAVE THE WHITE COAT ITS AUTHORITY?

This brings me to another question: Who are we trained to listen to?

We tend to speak of medical authority as though it simply emerges from education.

Medical school. Residency. Specialization. Degrees. Experience.

But human beings are not nearly that neutral.

We have also been taught what authority is supposed to look like.

The doctor has an image in our collective imagination.

And race complicates that image.

Research involving medical residents has documented patients questioning physicians’ credentials and ability, along with racialized and other biased behaviour directed at physicians. That matters.

Because apparently obtaining the education necessary to become a doctor does not necessarily guarantee that everyone will immediately see you as one.

Which means credentials alone do not manufacture authority.

Culture helps. Race helps. Gender helps. Expectation helps.

We carry an idea of who belongs inside the white coat before the doctor even opens their mouth.

Expertise is one thing. Being recognized as an expert is another.

And that raises an uncomfortable possibility:

Perhaps we do not simply listen to expertise. Perhaps we have also been trained to recognize expertise selectively.

NOW PUT THE BLACK PATIENT IN THE SAME ROOM

The question becomes stranger still when the person whose authority is being questioned is on one side of the room while another person’s credibility is being questioned on the other.

Research has repeatedly documented racial disparities in medical care.

One widely cited study found that some White medical students and residents endorsed false biological beliefs about differences between Black and White people, and that those beliefs were associated with racial bias in pain assessment and treatment recommendations.

Medicine has also had to reconsider clinical tools that incorporated race directly. Kidney-function equations, for example, once included an adjustment that could delay referral for specialist care for Black patients.

Even medical technology has not escaped scrutiny. Pulse oximeters have been shown to perform less accurately in Black patients, sometimes failing to detect low blood oxygen that is actually present.

So medicine and racism have made strange bedfellows.

Or perhaps not so strange.

Medicine did not develop somewhere outside society.

The people who built medical institutions lived inside societies already organized by ideas about race, intelligence, superiority, inferiority and human value.

Why would we imagine the white coat somehow emerged untouched?

LISTENING IS APPARENTLY STILL REVOLUTIONARY

And then there is something much simpler.

Listening.

The Agency for Healthcare Research and Quality reports research suggesting that patients are often interrupted within the first 11 to 18 seconds of beginning their diagnostic story.

Their response?

Teaching clinicians to let patients speak uninterrupted for just 60 seconds because listening can improve diagnostic safety.

Think about that.

We have machines that can see inside a human body.

We can examine cells. Sequence genes. Monitor electrical activity. Produce extraordinary images of organs while they remain inside us.

And one of the tools medicine still needs reminding to employ is: Let the person finish talking.

That becomes particularly important when some people already enter the medical encounter carrying less presumed credibility than others.

The Black doctor may encounter: Are you really the doctor?

The Black patient may encounter: Are you sure that’s what you’re experiencing?

And somewhere between those two questions sits the institution itself—still commanding enormous authority.

That is worth examining.

Sometimes the problem is not that the patient has nothing to say. It is that nobody has learned how to listen properly.

Perhaps my discomfort is not actually with diagnosis.

It is with certainty.

Certainty that does not leave room for the patient.

Certainty that cannot tolerate another opinion.

Certainty that forgets that diagnosis itself is a process.

A diagnosis can lead to the right treatment.

A diagnosis can also lead to unnecessary treatment, delayed treatment, or psychological distress when it is wrong.

Once a diagnosis enters a chart, it also becomes part of what the next clinician knows about you.

That does not make diagnosis sinister.

But neither does it make diagnosis innocent.

There is power in naming something.

There is even greater power when the person doing the naming belongs to an institution we have been taught to trust.

WHAT GOOD MEDICINE MIGHT LOOK LIKE

So perhaps the question should not be whether we trust medicine.

That feels too simple.

Perhaps the better questions are these:

Who are we trained to listen to? Who are we trained to doubt? Who is allowed to question whom? Whose description of their own body counts as knowledge? Who looks enough like an expert that we accept their authority before they have demonstrated it?

And what happens when the person sitting in the patient’s chair says: I hear you. But I want another opinion.

That should not be an act of rebellion.

It should be part of good medicine.

Because there is an enormous difference between respecting expertise and surrendering your right to question it.

And perhaps a diagnosis deserves the same thing every other powerful conclusion deserves:

A little curiosity.

Good medicine is not threatened by a question. It listens, it explains, and it leaves room for the patient to remain fully human.

SOURCES REFERENCED IN THIS PIECE

National Academies of Sciences, Engineering, and Medicine, Improving Diagnosis in Health Care — https://www.nationalacademies.org/projects/IOM-HCS-13-03/publication/21794

Research on the nocebo effect — https://pubmed.ncbi.nlm.nih.gov/21862825/

Agency for Healthcare Research and Quality, Engaging Patients to Improve Diagnostic Safety — https://www.ahrq.gov/diagnostic-safety/tools/engaging-patients-improve.html

Hoffman et al., racial bias in pain assessment and treatment recommendations — https://www.pnas.org/doi/10.1073/pnas.1516047113

Vyas, Eisenstein and Jones, Hidden in Plain Sight—Reconsidering the Use of Race Correction in Clinical Algorithms — https://www.nejm.org/doi/full/10.1056/NEJMms2004740

Sjoding et al., Racial Bias in Pulse Oximetry Measurement — https://www.nejm.org/doi/full/10.1056/NEJMc2029240