Chapter 10 — When the Patient Meets the Record

Decades of experience enter the modern health system, where observations, diagnoses, records and the patient's own account do not always describe the same reality.

The Person Who Arrives

When a patient walks into a hospital, the person entering the building is not the only thing that arrives.

A record often arrives too.

Sometimes the record gets there first.

It contains names.

It contains diagnoses.

It contains observations made by other people.

It contains interpretations.

It contains things copied from earlier records.

And it may contain statements whose origins have become difficult to trace.

By the time I began dealing intensively with the health system later in life, I had already spent decades discovering what could happen when a description of a person began travelling independently of the person being described.

The Record Is Useful

Medical records exist for good reasons.

A doctor cannot begin every consultation by reconstructing a patient's entire life.

Records allow information to move between clinicians.

They record investigations.

They preserve medication histories.

They allow one hospital to know something about what another hospital has already done.

The problem is not that records exist.

The problem begins when the distinction between an observation and an interpretation disappears.

What Was Seen?

I became increasingly interested in a very simple question:

What was actually observed?

That question is different from:

What did somebody conclude from it?

A patient can report pain.

A machine can record a measurement.

A clinician can observe movement.

An image can show anatomy.

Those are different kinds of information.

They may support one another.

They may also conflict.

What troubled me was discovering how easily an interpretation could become the thing later readers treated as the original observation.

A Sentence Can Travel

I had seen this before outside medicine.

A description could begin with one person.

Another person could repeat it.

A third could record it.

Years later somebody reading the record might reasonably assume that several independent people had reached the same conclusion.

But sometimes they were all repeating the same sentence.

The number of appearances did not necessarily tell me how many independent observations had occurred.

That became one of the reasons I began following the movement of information through my records.

The Patient Has a Record Too

I also kept records.

I wrote things down.

I retained correspondence.

I collected reports.

I began organising documents.

Later I built systems intended to help me find connections between them.

The Evidence Map grew partly from that need.

I was no longer satisfied with remembering that somebody had once said something.

I wanted to know:

Who said it?

When?

What source were they relying upon?

Did another record contradict it?

And what happened to the statement afterwards?

The Body in Front of Them

There was another difficulty.

Whatever existed in a record, there was still a body sitting or lying in front of the clinician.

That body could do things.

It could react to movement.

It could respond differently in different positions.

It could produce measurements.

Some effects could be reproduced.

For me, reproducibility became important.

If a particular movement repeatedly produced a particular response, I wanted that response observed rather than explained away before it had been examined.

Show Me

Perhaps this was another echo of the geologists.

A description of an anticline was useful.

Standing in front of one was different.

A diagram of an ancient mountain system was useful.

Walking across what remained of it was different.

In medicine I increasingly wanted the same distinction respected.

There was the theory.

And there was the thing that happened when I moved.

I did not expect every observation to prove my explanation correct.

I wanted the observation itself to survive long enough to be examined.

When Explanations Arrive Too Early

An explanation can be helpful.

It can also arrive too early.

Once a clinician believes an event has a particular cause, later information can be interpreted through that conclusion.

That is not peculiar to medicine.

People do it everywhere.

I do it too.

But in medicine the consequences can be substantial because the interpretation enters a record used by the next clinician.

Psychiatric Language

Psychiatric language became especially important in my records.

Words used to describe a person's mind have unusual power.

Once present, they can influence how apparently unrelated complaints are heard.

A physical report can become interpreted as belief.

Persistence can become fixation.

Disagreement can become evidence of the very condition being disputed.

That creates a difficult problem for a patient.

How does a person challenge a description without the challenge itself being incorporated into that description?

What I Was Trying to Correct

Over time I became involved in attempts to correct material in my medical records.

That work became much more complicated than simply saying:

This is wrong.

I needed to know where the statement originated.

I needed to know which records contained it.

I needed to distinguish an historical fact — that somebody had once made a diagnosis or description — from the proposition that the diagnosis itself was correct.

Those are not the same thing.

History Versus Endorsement

This distinction became fundamental.

A record can accurately state:

A clinician diagnosed X in a particular year.

That is an historical statement.

It is different from saying:

The patient has X.

One records that an event occurred in the medical system.

The other endorses the conclusion.

When those two things are blurred, old interpretations can become permanent characteristics of a person.

The Trouble With Being Complicated

I was not an uncomplicated patient.

I arrived with a long history.

I arrived with memories that were sometimes fragmented.

I arrived with questions about injuries from decades earlier.

I arrived with records produced by many different institutions.

I arrived knowing that some of those records contained things I disputed.

I also arrived with a strong desire to explain all of that.

That could itself create difficulty.

A complicated story takes time.

Modern clinical encounters often do not have much of it.

Recording

Eventually I became increasingly dependent on recordings, transcripts and written notes.

That was not because I wanted to turn every clinical encounter into a legal proceeding.

I had learned that my own recall could fail me.

I could leave an important conversation and later be uncertain about exactly what had been said.

A recording gave me something outside memory.

It allowed me to listen again.

It also allowed me to compare what I thought I had heard with what was actually said.

Memory Needs Assistance

For much of my life I had treated memory as though it were simply something a person possessed.

Later I came to understand my own memory very differently.

There were events I could recall with extraordinary clarity.

There were others that seemed inaccessible.

There were conversations that disappeared surprisingly quickly.

So I began building external memory.

Files.

Emails.

Recordings.

Timelines.

Notes.

Eventually databases.

Evidence Map

The Evidence Map was one attempt to bring those things together.

It was not intended merely as a collection of documents.

I wanted to see relationships.

A letter might refer to a medical report.

A medical report might repeat something from an earlier admission.

An email might show that I had challenged the statement at the time.

A later record might nevertheless reproduce it.

The information had a history of its own.

I wanted to be able to follow it.

The Hospital Is Not One Person

Another lesson was that a hospital should not be written about as though it were a single mind.

I encountered clinicians who listened carefully.

I encountered nurses who observed things that mattered.

I encountered people who went out of their way to help.

I also encountered people whose conclusions I strongly disputed.

Sometimes different departments within the same health service appeared to approach the same issue quite differently.

So when I write about a health system failing me, I need to resist the temptation to erase the people inside that system who did not.

Being Heard Is Not the Same as Being Agreed With

This distinction has also become important.

I do not require a clinician to agree with my explanation merely because I provide it.

I do want the explanation heard accurately.

I want the observations separated from the theories.

If a clinician reaches another conclusion after examining the evidence, that is part of medicine.

What becomes much harder is discovering that the thing being rejected is not actually the thing I said.

Religion Returned

There was another complication I had not expected.

Religion, which had occupied such a destructive place in my childhood, sometimes reappeared in settings where I was seeking health care.

For me that was not a neutral matter.

A religious reference that another person might regard as comforting could carry an entirely different meaning in my history.

I increasingly needed health care to remain health care.

I did not want religious interpretation introduced into clinical decisions or into conversations about my wellbeing.

That subject eventually became substantial enough to require its own record and, I suspect, its own chapter.

The Right to Say No

Health care also forced me to think increasingly about consent.

Consent is not simply a signature on a form.

It depends upon knowing what is proposed.

It depends upon being able to ask questions.

It includes the ability to refuse.

It also includes the ability to withdraw consent when circumstances change.

Those principles became increasingly important to me as my contact with the health system grew.

The Patient as a Participant

I did not want to be a passive object moving through a medical system.

I wanted to participate.

That meant asking questions.

It meant requesting records.

It meant comparing reports.

It meant sometimes disagreeing.

It meant acknowledging when a clinician knew something I did not.

And it meant expecting the same recognition when I knew something about my own history that the clinician could not know from a short consultation.

The Collision of Two Records

Eventually I came to think of some medical encounters as a collision between two records.

One was the institutional record.

The other was the record I carried.

The institutional record contained what health services had written about me.

My record contained what I remembered, what I had retained, what I had measured, what I had recorded and what I had learned from earlier documents.

Sometimes the two matched.

Sometimes they did not.

The interesting part was often the space between them.

Between the Layers Again

That brings me back to the problem with which this book began.

There is the event.

There is the memory of the event.

There is the record made at the time.

There is another person's interpretation.

There is what a later record says the earlier record meant.

And there is the person, decades later, trying to understand how all of those things fit together.

The answer is not always found by choosing one layer and throwing the others away.

Ten Chapters

When I began this experiment, I did not know what shape the first part of the book would take.

I have moved from medical records back into childhood.

I have travelled with geologists.

I have been underneath a Linotype.

I have woken in a Melbourne hospital and panicked because somebody said it was Thursday.

I have returned to Robert and the shooting.

I have followed Janette through an event in 1962 and into records made decades later.

I have revisited processes established to hear survivors.

I have remembered Patrick Smith.

I have crossed the Pacific to Canada.

And now I have returned to the patient sitting in front of a medical record.

That is enough for a first pass.

Now Read It Again

The next task is not simply to write Chapter Eleven.

It is to read these ten chapters again.

Some events currently occupying a few paragraphs may turn out to require chapters of their own.

Germaine is already one of them.

Herbie may be another.

The hospital glass may become another.

Parts of Canada may separate from one another.

The modern health history will almost certainly divide into several stories.

There are also hundreds of pages of earlier writing waiting to be examined.

Some will confirm what I have written.

Some may contradict it.

Some will remind me of things I have forgotten.

And some may show that what I now regard as one story was once several different stories.

A First Map

These ten chapters are therefore not the book.

They are a first map of it.

A map is useful partly because it shows where something is already known.

It is also useful because it reveals the blank spaces.

There are many blank spaces here.

I no longer regard that as a reason not to begin.

The blank spaces are part of what I am trying to understand.

For the moment, ten chapters are enough.

Now I can go back to the beginning and see what life appears between them.