Sunday, May 20, 2012

far away

Power tends to corrupt.

-- Lord Acton

Cursed is the ground.

-- Genesis 3:17

A long time ago, in a hospice far far away that doesn't exist any more, I sat in a super-heated atmosphere listening to an official of the state board of health.  We had been through an ugly patch with the board of health, who had made it very clear that they could shut us down if we didn't prove in forty days (interesting, those biblical overtones) that we had fixed certain problems.

These deficiencies of the long ago far away hospice were not of a kind that would raise your blood pressure, reader.  We had not stolen money for crackpot investments, or abused our patients, or shorted the sheets, or worn funny hats to a funeral, or prescribed the wrong medicines.  No one accused us of theft or maleficence.  Our sins were procedural.  But we had been within forty days of being shut down for them.

In hospice, an interdisciplinary team delivers specialist-level palliative medical care.  There are many openings in this legal definition that invite an inspector's probing.  To the regulatory mind, it means we must prove not only that we take care of our people, but that the clinician of each discipline is executing a specific plan for that care, and that our plans are undertaken at all times in collaboration with all the other disciplines, because if we do not collaborate then we are not inter-disciplinary.  (Every time a clinician writes the word "collaborate" in a clinical note, a hospice manager gets her wings.)

We must therefore meet in certain groupings at certain times and talk about certain subjects in a certain order, and we must record those conversations in a certain language on certain forms by certain deadlines.  This all takes a certain amount of time which, we grumble, would be better spent taking care of our people.  But there are agents whose operating assumption is that we are thieves, and we have to defend our virtue and our mission from them.

I was sitting, long ago and far away, around the table with a medical director, nurses, social workers and our supervisors.  There was fear in the room, and there was madness.  This was the interdisciplinary team.  The eyes of the clinicians were weary and shifty.  The eyes of the supervisors had glazed over.  The forty days were now past, we had not been shut down and we were on the road to forgiveness, but the regulators had smelt our fear, and had come back with more suggestions.

This is what the regulator said that morning.  The pattern of our visits was not regular or specific enough.  Each of us had to choose a specific schedule of visits for each patient and stick to the schedule.  If I said I would visit a client twice a month, I had to be appear every two weeks by the calendar, at intervals of neither more nor less than fourteen days.  If I chose the weekly schedule, I had to visit on the same day of the week each time.  If I chose the monthly schedule, my visits had to be twenty-eight days apart precisely (certainly not on the same date each month because, given the occurrence of weekends and the variation in the lengths of months, that would produce irregularities).  No kidding, that is what she said.  Nurses and social workers were to observe similar rigors, according to their different caseloads.  Anything else was non-compliant.  Anything else could get us shut down.

In the silence that followed her leaving, I wish I had said something like this:

"The instructions you've just heard are impossible and toxic.  We cannot do this and we ought not to.  It would be malpractice.  So we must be creative.  We must appease this person's anxieties while protecting ourselves and our clients from her fancies."

Sometime it's a chaplain's job to say that kind of thing.

The whims of regulators are as real as tumors, and as necessary to address; but we can't let whims define the mission.  Sick people's needs don't go by the calendar.  Death doesn't follow doctor's orders or state regulations.

What was said to us ought not to have been said.  Spoken to people who had been through what we had been through, these words were harmful.  There was a drunkenness here, a Speaking While Intoxicated with power of the state.  But how did it come to this?  What had we done to deserve it?

A friend of mine who is an airline pilot says that every dial and display in the cockpit is a monument to some catastrophe.  In the same way, every regulation is a monument to some moral outrage, some theft or perversion of care, some harm done by malice or incompetence.  But whose maleficence, whose incompetence are we paying for?

Not ours, we say.  I'm not abandoning or abusing patients, stealing money or selling pharmaceuticals for profit.  I'm one of the good guys.  I'm not part of the problem.  I'm part of the answer to the problem.  Why must I pay the price?  And why must my clients pay the price of my distraction?

The great sad truth is that we don't have to deserve it, but we'll pay the price anyway.  The ground is already cursed, because someone did terrible things somewhere sometime, and we're all of us potential sinners, if not in our own eyes then in the eyes of others, and we must endure the suspicion of those others in order to win their provisional and imperfect trust.  We dream of working in the freedom of our honesty and virtue, doing what seems best in the moment when it seems best to do it, knowing that we mean well and have some skill to do good, sometimes making mistakes but subject to correction.  But that is a dream of paradise, lost long before the age of $646 toilet seats and of lawyers who chase ambulances and of bishops who protect pederast priests and of banks who grow too big to fail by lying about the value of assets.  So a chaplain or doctor -- or for that matter a banker -- who thinks they can work without regulation is a moral idiot.

I suppose that's what generations of theologians are driving at when they say the words "original sin."  You can't just do good, because that option was lost long ago.  All you can do is the best you can do, deformed as it is by ancient wrong, unassuageable suspicion and institutions created to disarm it.  That's all you have to justify yourself with, and sometimes it doesn't seem like much.

That far away, long ago hospice did not die right away.  It lingered on for a few years, mortally demoralized, but never really recovered from the shock, or from hasty systemic changes demanded by state power.  The wisest course, it seems, is not to let the powers get angry with you in the first place.

You can't recruit hospice clinicians by showing them the forms they'll fill out.  You must attract them by showing them the people they will serve.  We mad folks do the work in faith that our benevolence, diligence and compassion are the client's best protection.  Regulators do their work in faith that regulations are the best protection.  The two faiths are not equivalent, and there will never really be peace between ministry and regulation.  That's why those who rise to management of this impossible abyss deserve our compassion: there's no way to do what they must do.  Yeshua said that we should render unto Caesar what is Caesar's and unto God what is God's, but what if Caesar and God claim both sides of the coin?  The only hope is a sort of finesse -- well, let's call it creativity.


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