Some People Live in the Notes
Some People Live in the Notes
Standardized systems need structured information.
Checkboxes, scores, task lists, categories, and measurable fields make it possible to organize care across large systems.
But some people cannot be safely understood through structured fields alone.
My son Alex is one of them.
A form can accurately say:
- total assistance
- ventilator support
- quadriplegia
- abnormal blood pressure
- respiratory equipment
- dependent for activities of daily living
All of that can be true.
And still miss the most important part.
Because Alex often lives in the notes.
The notes tell you what happens when he sits upright.
They tell you that heart rate and blood pressure may fall together.
They tell you that pain can trigger a very different physiologic response than someone might expect.
They tell you that a diaphragm pacer and ventilator are not interchangeable supports.
They tell you that an intervention that would be routine for another patient may affect him very differently.
They tell you what Alex feels before a monitor necessarily reflects the change.
Those relationships matter.
As I have been reviewing years of records from Rainbow Babies & Children’s Hospital, one thing has become increasingly clear:
The most important clinical work often happened when the team went beyond completing tasks and asked:
Why is this happening?
A blood pressure reading was not just a number.
It was interpreted alongside heart rate, position, symptoms, injury level, respiratory status, and Alex’s own report.
A respiratory setting was not just a setting.
It was evaluated in relation to diaphragm pacing, ventilation, secretion management, CO₂, and how Alex actually responded.
That is very different from simply completing more tasks.
You could make a checklist longer and longer:
Check blood pressure.
Check heart rate.
Suction.
Position.
Adjust equipment.
Document intake.
Give medication.
But a longer task list does not automatically create understanding.
And this is where another issue becomes important:
Notes are only useful if someone knows what they mean.
Two people can read the exact same note.
One sees:
“HR 58 while sitting upright.”
Another sees:
position + falling heart rate + blood pressure + symptoms + high cervical spinal cord injury + autonomic history + pattern over time.
Same information.
Different interpretation.
Different level of safety.
That is why competency cannot be reduced to whether someone is licensed or whether they can perform a task.
Competency also includes the ability to recognize patterns, understand context, connect information across systems, and know when the person in front of you does not fit the usual model.
This matters far beyond one person.
As healthcare and disability systems move toward increasingly standardized assessments, support levels, algorithms, and task-based documentation, we should be asking:
What happens to the people whose most important needs are not contained in a single box, but in the relationships between the boxes?
And if the answer is:
“Put the complex information in the notes,”
then another question immediately follows:
Who reads those notes, who understands them, and how does that information actually affect the decisions that matter?
Because documentation alone is not enough.
Information does not become clinical knowledge until someone understands what it means for the person.
And for some people, that understanding is not extra.
It is the care.
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