I have long believed in patient centered care. This is the paradigm from which I delivered nursing care and the horizon on which I base my expectations for care and treatment as a receiver of care in the health system.
After 12 years accessing care in the same university health system I witnessed patient-centered care die while with my son at a leading cardiology center of care.
We arrive early.
The provider is late by 1 hour.
We wait patiently.
He enters hurried, and half-listening.
We ask questions.
He provide partial answers, never looking at my sons record or accessing his electronic chart.
We request more information.
He tells us my son needs a high risk invasive procedure.
We ask for more information.
He doesn't show us images or cardiac rhythm strips.
We ask for a time frame.
He tells us we will know in a week or two.
He rises from his chair telling us his assistant will be in with discharge instructions.
We wait for 30 minutes.
The assistant enters with a monitoring device.
We tell her that it is a device my son has already completed a study with recently.
The assistant tells us it is ordered and proceeds to abrade my sons chest with sandpaper, alcohol and attach it.
We ask if insurance pays twice for the same procedure.
The assistant tells us she doesn't know, we will need to call them.
We ask what the rationale is for doing the test twice.
The assistant tells us she doesn't know, but the doctor sometimes does it twice.
We ask her to double check.
The assistant leaves the room.
We wait.....
The assistant returns to tell us that the device was ordered for another patient. Not my son.
We stare at her.
The assistant tells my son to remove his shirt, and the red abraded area is weeping as she removes the monitor.
We ask how the mistake was made.
The assistant tells us the nurse wrote the order on the wrong patient chart.
We ask why the patient name wasn't validated and verified.
The assistant tells us this happens sometime, but hasn't happened in a while.
We ask if the nurse will come talk to us.
The assistant tells us no.
We ask what the next steps are.
The assistant tells us she doesn't know, and asks what the doctor told us.
We tell her my son will be scheduled for a high-risk procedure, and has bleeding risks.
The assistant tells us those are our next steps.
We ask her if there are any discharge instructions.
The assistant tells us, I don't think so.
We ask how we will know what to do next to get ready for the invasive procedure.
The assistant tells us, we can call next week and ask for information.
We ask what number we should call.
The assistant tells us, she doesn't know.
We ask if we can talk to the nurse.
The assistant leaves the room.
We wait for 30 minutes.
NO one comes, No one checks on us, No one provides us any further information.
We leave the patient room to find a staff person.
No one is anywhere to be found.
The hallway is empty, the staff spaces vacated, silent,
We are alone.
We leave the office to find someone in another pod
The scheduler is available.
We ask for our discharge papers and tell her what happened.
The scheduler prints out the discharge papers.
We read the discharge instructions and they say - Follow up.
No more, no less, no specificity, no information, no actual next steps.
We stand in the hallway, and I get frustrated and ask 'what the fuck is going on here?'
The scheduler doesn't know. She calls the manager.
The manager takes us to a patient room.
She knows what has happened, the staff have informed her.
But she asks us 'What happened?'
We tell her the short version of the story.
She says 'I know'
We tell her that our appointments typically end up this way.
Wrong information, no information or worse yet an error occurs.
She tells us that 'She understands that we are frustrated'
We tell her that the care system is broken.
She tells us it just our experience.
We tell her that it just can't be our experience.
We tell her it can't happen every time, but it does.
We tell her that her staff don't verify patient identity, and provide medical care in error.
She tells us it is 'unfortunate' and she 'hears our frustration'
We show her the discharge instructions that don't have any directions
She tells us it is 'not their practice to not include instructions' and 'this is not typical'
We tell her this is the second time it has happened to us
She tells us 'she hears our concern' and 'she is sorry'
We tell her that we don't feel like the care is reliable or safe
She tells us 'they are working to improve'
We tell her that we are concerned about surgical procedures being performed because staff are sloppy
She tells us 'she understands'
We tell her to ask the cardiologist to come talk to us
She tells us 'we will try to find him'
We tell her we will find another place for care
She tells us 'we know you are frustrated'
Health care today is neither patient-centered or coordinated.
