Sunday, December 29, 2019

4am Rant

Gads, I don't even know where to start.  A young person living in my home (my eldest's fiance) has just spend something like 17 hours in an ED hallway, 12 of them waiting for an inpatient or observation bed. They've been suffering from seizures of unknown origin (though possibly related to their not-quite-fully diagnosed or treated hyper-mobility disorder).  A neuro-consult from that facility was impossible to get w/o an order or referral, which apparently wasn't provided when they left another ED six days ago when they were first seen for these episodes.  And so they scheduled an urgent visit with their primary care, and had another seizure during that visit, which prompted an ambulance ride to the ED attached to the hospital they need a consult with.

Evaluation took about four hours, not bad considering prior experiences, and a decision to admit for observation, appropriate testing, et cetera was made.  But no beds are available in that unit.  Nor in the ED.  After three promised beds had been given to others (I won't argue others don't need them more, I will argue that the process is broken when it causes three broken promises), and the planned test is now scheduled 23 hours from now (at 4am in the morning), it was time for me to make a phone call.  The ED nurse had the gall to complain about the "inappropriateness of my calling" in front of my eldest and the patient.  I made a very polite call and requested to speak to the patient's attending.  If there was inappropriateness, it was on behalf of the arguably overworked nurse.

I made the call because we want to understand the risk of simply going home at this stage, and the chances of getting a bed in the next eight hours.  At this stage, the psychological health of their patient is in the toilet, the hospital cannot keep up with their med regimen, or treat pain, causing further distress.  The noise, blaring music, and bright lights make it impossible to sleep.

The need for a workup is sufficiently serious to make it worth a 24-hour wait in a hallway.  Six days of seizures is five too many.  But the other impacts on the patient's health given the conditions, lack of care and ongoing delays are sufficiently concerning to make it necessary to make a decision about the right way to achieve appropriate diagnosis (we have yet to even know what to do about treatment).  Think about that, how would you feel about having seizures that leave you unable to move for hours afterwards (NOT too-tired, rather, UNABLE to move, the limbs simply don't work, don't respond to stimulus, the nerves aren't working).  Day after day?  And have to wait for diagnosis...

Being sick through the holidays sucks. I have great respect for the medical professionals who work through the holidays.  But I also understand who most often gets stuck with those shifts.  And as a patient (or the patient's advocate), it's no damn fun at all.

What would you do in this situation?