ONE SMALL BOY ALONE IN THE HOSPITAL

• Tim Barrus: Health Care is More Than Surgery
• Chase had open heart surgery.
• I walked into his hospital room today, and the smell was explosive. Reeling, I had to leave the room, swallow, and go back again.
• I am at the moment sitting in my jeep outside a hospital supply store.
• In a minute, I will be going into the store to buy stuff so I can return to the hospital to bathe the kid.
• He smells really bad.
• And I am really pissed off.
• All the high tech surgery in the world, and they can’t keep the kid clean. Rather than even try to keep Chase clean, they would pump him full of antibiotics to prevent infection. This is health care in America. The fucking thing sucks.
• It would take too much time to clean him.
• And they won’t listen. After all, they’re the professionals. I am only an annoying, complaining bitch they’d rather not listen to.
• What smell.
• The one in his room. The one that is directly related to the infected bedsores he now has.
• They don’t give a fuck.
• Where is my sword.

Mary Scriver:  What I know

Now and then an individual personal case that no one would normally ever know about becomes a living -- and suffering -- illustration of universal forces that need to be confronted.  Here’s the thing:  Chase had open-heart surgery.  Now his health is endangered because he has not been washed and has developed bed sores.  They are infected.  Luckily, Tim has -- African-style -- personally bought supplies, washed the boy, and demanded better care.  Why should WE care?

PANDEMICS:  People were happy to hear soothing news about AIDS from the recent conference.  What is not grasped is that HIV-AIDS is not a “stand-alone” sort of affliction.  It is by definition an inability to defend oneself against the things the immune system is meant to resolve, the daily little problems of bad colds, fungus, skin problems, small traumas and large (broken bones), food poisoning and other environmental hazards.  It is a disease that comes from and confines the victims to a lifestyle ghetto that exposes them to TB, hepatitis, STD’s, malnutrition, injected drugs.  This forms a reservoir that not only overwhelms the individual but constantly leaks contagious diseases into the rest of the world.  This is especially insidious since “respectable” people are in the habit of visiting this reservoir for their secret needs, thereby becoming vectors to their own families.  This vector’s use of people trapped by stigma suggests the reason the reservoir is not really addressed and resolved -- it that the users WANT it and block remedies.

IATROGENIC MEDICINE:  Another thing not addressed publicly is the danger of the potent medicines used to treat HIV-AIDS.  The number of coronary incidents involving patients in their early teen years, otherwise functioning well and keeping their blood titers under control, is a clear signal that the meds are the problem.  Curing one affliction by imposing another is not acceptable medicine.

STIGMA:   When I did my hospital chaplaincy, I found that nurses ran the wards according to their own moral principles which tended to be conservative.  They were cheerfully responsive to people like their own relatives, especially old people, but they would not even let me visit a young woman with genital herpes though her cries of distress were heard in the hall.  Plainly they felt she deserved to suffer. They stigmatized her.  And they interpreted my services as excusing and rewarding.

But there is another problem with stigma:  our culture stimatizes those who do low-pay service work, especially cleaning, and exclude people from other countries who are not accustomed to that stigma.  What’s more, the hospital management, thinking little of the humanity of their low-pay workers, cuts positions while tightening up and expanding work loads.  The people who do the basic cleaning of rooms and patients are in this category of overloaded, underpaid workers and carry with them constant resentfulness and the need to punish someone else who is even less able to defend himself, like a boy with recent surgery.

INFECTIOUS HOSPITALS:  A great outcry has been raised about the explosion of MRSA and “flesh-eating” infections from hospitals, esp. those “out of the commercial loop” like VA and Indian Health Service hospitals.  It has been asserted over and over that simple conscientious use of soap and water is the best prevention.  We are constantly creating antibiotic resistant microbes.  They tell us we are short of jobs, that we are converting to a service economy, and yet paying for the simple service of bathing seems beyond us.  Again, this is not about one boy in hospital, because his care is directly DIRECTLY connected to the care we all get.  (You can believe that the management of that hospital works in nice clean offices where they don’t need to worry about getting their clothes dirty.)

COMMUNITY SCAPEGOATING:  Most of us, in high school, read Shirley Jackson’s chilling sci-fi story about stoning, scapegoating, “The Lottery”.  And yet the message doesn’t get home.  We are still scapegoating certain populations -- like street boys, sex workers, and the defiant who try to protect them.   We let them die, sacrifice them to the Gods of Greed we worship, let honor be gagged in the name of respectability.   We have the irrational belief that the neglect and suffering of one boy, unknown, in a mismanaged hospital somewhere else, has nothing to do with us, but let me assure you as a former hospital chaplain and as a former nursing home ward clerk, if that boy Tim bathed is neglected, the same forces are at work in your own hospital where your own neighborhood sons and nephews and students are sent.  And you. 

BIG MONEY:  Today’s hospitals are run for profit, the same as our prisons.  Sometimes it’s hard to see the difference.  Open heart surgery is a high-profit enterprise that means high salaries and high prestige for the surgeon or even for the surgical staff.  That doesn’t even count the cost of the machinery and supplies for such an operation.  

But ordinary bed care, which used to be supervised and done by nuns with centuries of tradition and clear religious rewards regardless of society, is just not there.  Even in the local rural nursing home, my neighbor quit her nurses’ aide position (which she needed) when she found a wheelchair encrusted with feces from a previous patient.  It had been put away without cleaning.   Management said it was helpless, though it had imposed a rigorous hand-washing workshop that even the clerks had to attend.  It was evidently just a check list item for insurance and evaluation.

On the one hand we have an almost phobic devotion to antibacterial wipes before touching the handles on a supermarket shopping cart.  On the other hand we let excrement soak into defenseless people’s beds.  It’s arguably more dangerous than drunk driving, smoking or guns -- but we never discuss it.  The difference is money.  There is no money in ordinary bed care.  We pretend it is isolated in the hospital, but it is not.

HOW TO TURN THE TIDE:  Involve surgeons.  They want good outcomes.  Honor low-pay, low-status workers when they do a good job.  Do not let hospitals and nursing homes to be closed and barricaded.  Go walk through, maybe as a citizen project.  Don’t forget to visit elders.  Phone calls won’t do.  They’ll tell you anything to get you off the line.  Take a camera.

In addition, for this boy, those men who survived the original waves of HIV-AIDS and learned to nurse by helping lovers to die -- few as the survivors are now -- need to step up.