What Happens When the Person Falls Outside the Model?

What Happens When the Person Falls Outside the Model?

Friday, Alex and I did a 5K.

He rolled. I walked and jogged.

We had a blast, and we both had pretty decent finish times.

It was life. #LivingNotJustExisting

Just Alex and me participating in something we enjoy.

Later that night, Alex told me his heart rate felt like it was doing something strange.

He wasn’t in distress.

He wasn’t asking me to call 911.

He wasn’t asking to go to the hospital.

He simply knew something felt different and asked me to check the pulse oximeter.

So I put the finger clip on and turned it on the machine. 

His heart rate was bouncing all over the place.

We’ve experienced unusual autonomic responses before, so we watched and monitored things. 

We paid attention to how he felt and what his body was doing.

We considered what had happened that day.

He had completed a 5K. He had urinated somewhat more. Perhaps those things contributed. Perhaps they didn’t.

I don’t know.

And that is actually part of the point.

Not everything about a medically complex human body fits neatly into a known category.

Things settled.

Alex remained okay.

There was no reason to turn an unusual observation into an emergency simply because we couldn’t immediately explain it.

But neither would it have been appropriate to ignore it because it didn’t fit neatly into something we could name.

We observed.

We interpreted.

We monitored.

And we remained prepared to act if the situation changed.

That sounds simple.

But underneath it are more than two decades of learning Alex.

The task wasn’t “check heart rate”

A standardized care plan could easily capture the actions:

Check pulse oximeter.

Monitor heart rate.

Observe for symptoms.

Notify physician according to parameters.

Seek emergency assistance when indicated.

Those are tasks.

But the most important part of what happened that night wasn’t performing the task.

It was knowing what the information meant in the context of Alex.

Was this unusual?

Yes.

Was he distressed?

No.

Had we seen unusual autonomic behavior before?

Yes.

Was it escalating?

No.

Did it require continued attention?

Yes.

Could that answer have changed?

Absolutely.

That is something much harder to put on a task inventory.

Competency is not simply knowing how to perform the task. It is knowing how to understand the person while performing it.

And that distinction matters increasingly as people with extraordinary injuries, rare diagnoses and medical technologies live longer and live successfully in their communities.

Medicine is creating people our old models did not anticipate

This is a wonderful problem to have.

People are surviving injuries and conditions they once would not have survived.

Technology is allowing people to live at home who once would have remained in hospitals or institutions.

Diaphragm pacing is one example.

New therapies are emerging.

New combinations of technologies are becoming possible.

And people themselves are accumulating decades of knowledge about bodies and situations that may barely exist in medical literature or large datasets.

But our support systems still need to decide:

What category?

What assessment?

What service?

What provider?

What task?

What level?

What setting?

And I’ve begun wondering whether one of the gaps we’ve been identifying is larger than any single missing service.

What if the gap isn’t one missing program or one missing assessment category? What if the gap is the system’s limited ability to recognize and respond when an individual’s needs fall outside the models the system already knows how to administer?

That would explain a lot.

I’ve seen what happens when professionals recognize that limitation

Years ago, we experienced something at Rainbow Babies & Children’s Hospital that profoundly changed how I understood good medical care.

Alex was extraordinarily complex.

The team knew it.

But instead of pretending that expertise meant they automatically understood everything about him, they worked with us.

Dr. Lidsky and others were willing to ask questions.

What have you seen?

What works?

What doesn’t?

What do we need to know?

We all learned.

Years later, we experienced something similar with members of the OSU team.

Their professional expertise didn’t disappear because they listened to Alex and me.

Quite the opposite.

Their expertise allowed them to recognize when the person in front of them contained information their professional training did not.

That’s an extraordinarily important form of competence.

The safest professionals were not always the ones who entered Alex’s room believing they already understood him. They were often the ones confident enough to ask what they still needed to learn.

And I’ve experienced the opposite

We have also experienced environments where, with some important exceptions, the response to something unusual was very different.

Instead of:

“Help us understand what is happening with Alex.”

the approach too often felt like:

“This is what normally happens, so this must be what is happening with Alex.”

When the expected explanation didn’t fit, the tendency was not always to question the model.

Sometimes the person was pushed harder into it.

And in our experience, that became dangerous.

We learned very early that something being standard does not automatically make it safe for Alex.

Sometimes what routinely works for many people simply doesn’t work for him.

Sometimes it causes secondary problems.

Sometimes the difference is significant.

That history is why I pay so much attention today when systems talk about increasing standardization.

Standardization isn’t the enemy

Standards matter.

Protocols matter.

Licensing matters.

Assessment tools matter.

Task inventories matter.

Categories matter.

We could not operate large healthcare and support systems without them.

But they all have boundaries.

And human beings don’t always stay within those boundaries.

Standardization requires categories.
Categories require boundaries.
Human beings do not always stay within those boundaries.

When that happens, the system needs a mechanism that says:

This does not fit. Stop. Look closer.

Not:

Pick the closest box and keep going.

Because otherwise something subtle happens.

The system doesn’t recognize that it encountered an outlier. The outlier disappears into the data.

The same principle applies to professional licensing

A license establishes something important.

It tells us a person has met defined professional requirements.

But a license cannot possibly establish individualized competency with every diagnosis, technology, physiology or person that professional might encounter.

A nursing license does not automatically mean experience with every respiratory technology.

It does not automatically mean experience with rare autonomic responses.

It does not automatically mean experience with every spinal cord injury or any. 

And it certainly doesn’t mean the professional already understands this individual.

That isn’t an insult to professional licensing.

It’s recognizing what a license can—and cannot—tell us.

Qualification answers: “Are you permitted to do this work?”
Competency answers: “Can you safely do this work for this person?”

Those are different questions.

We cannot task-list our way out of medical progress

I recently learned that Ohio is continuing to add items to its nursing task inventory as new needs arise.

I understand the reasoning.

New technology appears—add the task.

New treatment appears—add the task.

New intervention appears—add the task.

But medicine will keep moving.

People will continue surviving.

Technology will continue evolving.

And new combinations of diagnoses, injuries, treatments and technologies will continue appearing.

Eventually we have to ask:

Is adding another task enough?

Because the complexity often isn’t contained within any single task.

It exists in the interaction among them.

Knowing how to operate a device isn’t necessarily the same as understanding how that device interacts with one particular person’s physiology.

Knowing how to obtain a heart rate isn’t the same as knowing what an unusual heart rate means for that person.

Knowing how to perform an intervention isn’t the same as knowing when, why, or whether that intervention is appropriate.

And sometimes the most competent response is:

I don’t know exactly why this is happening. Let’s watch carefully, use what we know about this person, and be ready to change course.

That is not failure.

That is judgment.

Perhaps this is what person-informed care really means

Person-informed care doesn’t reject professional knowledge.

It adds another source of knowledge to it.

The physician brings medical expertise.

The nurse brings nursing expertise.

The therapist brings therapeutic expertise.

The individual brings expertise developed from living in their own body every hour of every day.

And sometimes a family or long-term caregiver brings years or decades of observation about patterns that aren’t captured anywhere else.

The goal isn’t to decide whose knowledge wins.

It’s to put those sources of knowledge together.

That’s what the best teams we’ve encountered have done.

We all learned.

And Alex was safer because of it.

Outliers shouldn’t disappear

This matters far beyond Alex.

As medicine advances, there will increasingly be people living lives that previous systems, datasets and service models never anticipated.

Those people should not be treated as problems with the data.

They may actually be telling us something incredibly valuable:

The model needs to evolve.

So when an assessment doesn’t quite fit…

When the available box isn’t accurate…

When a task inventory doesn’t capture the necessary judgment…

When a licensed provider hasn’t encountered the technology…

When a person’s physiology doesn’t behave according to the expected pattern…

perhaps the answer shouldn’t always be to push harder toward standardization.

Sometimes the appropriate response is:

This does not fit. Stop. Look closer. Learn.

That’s what some of the best medical teams we’ve encountered were willing to do.

And it is something Alex and I learned to do ourselves.

Friday night, I didn’t have a box for what his heart was doing.

I didn’t need one.

I needed to know Alex.

I needed to listen to him.

I needed objective information.

I needed the history we have accumulated over many years.

I needed judgment.

And I needed to remain ready to respond if something changed.

Perhaps our systems need the ability to do the same.

Because progress will continue creating people who fall outside yesterday’s categories.

The question is whether our systems will try to make those people fit the old models—or allow those people to teach us how the models need to change.

#TheGoalIsLife
#PersonInformedCare
#ComplexCare
#HCBS
#DisabilityAdvocacy
#MedicalComplexity
#IndividualizedCompetency
#OneNuggetAtATime