For people with severe disabilities like me, you’re paradoxically only as independent (defined here as self-directing, in control of your own daily existence) as the people you’re depending on enable you to be.  As I wrote in my last post, if your caregivers are responsive and willing and able to support all your needs, your disability becomes a minor, almost social/cultural difference.  If you don’t have good supports, that same person may end up with repeated illness, lying helplessly on their back. This is why being in the hospital and repeatedly running head-first into “that’s not my job” can have such a tremendous impact. It really is one of the worst things ever about hospitalization.

“That’s not my job.” For me, these are four of the most hated words in the English language.  But hospitals, whether here in New York City or back in Alabama, seem to encourage them with their strict, stifling policies.

In the home, I had one nurse at a time, and she’d do everything I needed.  Simple.  I got used to that. Here, even charge nurse RNs aren’t allowed to change the humidifier water bag, even though it’s essentially identical to the IV bags they could hang in their sleep, because anything involving ventilation is the purview of Respiratory.  And since there are only two respiratory therapists for the North Campus, your lungs may dry out and form tumbleweeds before they get to it.  It’s all fun and games until a tumbleweed blocks someone’s airway.

Nurses don’t (usually) wash patients.  You’re dirty?  “You’ll have to wait until the aides are free.”  “Your ass will be washed in the order it was received. “

I’m allowed to eat lunch in my room, but anyone who needs assistance to eat (me) can’t eat in the cafeteria; it’s banned.  Because “what if something happens?”

You need a doctor’s order just to drink gingerale.

The aides can’t mouth suction (the simplest form of suctioning).  They’ll go try to get a nurse while you choke.

The staff can trim your fingernails, but not your toenails.  Only the official hospital podiatrist can do that.

They had allowed “med-surg technicians” (MSTs) to suction patients, change dressings and do tube feedings in addition to aide tasks. This worked well, with no problems, for over a decade.  But since January, the government has declared only nurses are allowed to do those things, which has meant less care for patients (hello, there’s a nursing shortage) and deeply exacerbated the madness over the division of labor, leading us straight to reductio ad absurdum.  The outcome (two grown women standing over me as I struggle, saying they can’t mouth suction and will have to get a nurse) is absurd, therefore the policy causing the outcome must be fundamentally absurd.  My girlfriend (who uses a powerchair) can do it for them, however, while they stand helplessly, paralyzed by their own rules and regulations (and once again, we’ve answered the “who’s more disabled?” question from my last post).  This is why I say I’ve not yet moved to New York City, I’ve moved to an alternate dimension that’s loosely connected to New York City on the outside.

Art by plognark.com

The motive for all this, ultimately, is LIABILITY.  They’re practicing “defensive medicine.”  If something happens, they can say, “respiratory tasks are only done by a certified respiratory therapist” or “only trained nurses are allowed to do X, Y and Z.”  But to accomplish this, they’ve created a tangled division of labor that stresses patients (“wait for a nurse” in an emergency probably creates more liability, not less).  There are so many ways they could make it better for patients, like letting nurses do routine respiratory things, freeing up the RTs for when they are really needed.   And for heaven’s sake, let the MSTs do what they have successfully done for years, because there really aren’t enough nurses to do it alone.

It’s definitely discouraging how far immorality can go in the name of  “policy” and “just following orders.”  The staff here are in an alternate dimension where it actually makes sense to let a patient suffer for “the letter of the law.”  Things that make no sense are blindly accepted.  Lewis Carroll-esque absurdity is unquestioned normalcy here.  And you’ll never convince them that they’re in a bizarre alternate reality.  New staff come in, and just accept that because it’s policy, it obviously must be in the best interests of patient safety.

I’ve suffered a lot in the name of “patient safety,” and yeah, sometimes I get angry.  There’s got to be a better way.

Nick

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