[Marxism] On Schiavo

[Andy <esquincle@xxxxxxxxxxx>]

Sorry to flog the dead subject and apologies for the length.

The New England Journal of Medicine will shortly publish two pieces on
the Schiavo case.  They are available (no need for password) in pdf
format at
http://content.nejm.org/early_release/index.shtml#3-22-05
I won't discuss these here, but mention them for interest in light of
the recent enlightening discussion.  Also these articles seem to be an
indication of how commonplace difficult end-of-life decisions have
become in modern medical practice --  and how state intervention in
these decisions remains utterly unwanted.

=====

A few years ago I was in training and on duty overnight.  I took a call
from a doctor at a small rural hospital who had a patient that he
believed had suffered an intra-abdominal catastrophe.  She had
hypotensive shock.  Would I please accept the patient in transfer,
since our hospital had surgeons and an ICU available (and his hospital
had neither)?

I accepted the patient and arranged for an urgent surgical evaluation
-- the surgical resident and I literally met the ambulance crew and saw
the patient on their stretcher in the intensive care unit.  The patient
clearly had an acute abdomen -- massively, tensely distended -- and she
was quickly rushed off to the OR.

This young African-American woman, then in her 40s, had cerebral palsy.
 Her developmental disability had proven too much for her family when
she was still very young and so she became a ward of the state.  She
was, when young, a patient at the infamous Willowbrook at the very time
when its inmates were the subject of human experimentation --
specifically they were injected with hepatitis, -- vulnerable human
beings intentionally made sick by American doctors as a method of
study.

(Horrors of Willowbrook (there were other horrors too) would lead to a
large discussion about human experimentation in American medicine,
reforms in the care of the mentally ill and developmentally disabled
and the creation of Institutional Review Boards to govern human
research.  They also helped make careers for Geraldo Rivera and
others.)

More recently, my patient had become a resident at a community-based
home, part of the "association for retarded children" network, where
she seemed to have a rather happy existence, requiring lots of care but
communicating in a rudimentary way with her devoted caregivers.  Her
biological family had also followed her through the years, and
continued to involve themselves in her life, increasingly so as she
aged.  Technically she remained a ward of the state.  This fact soon
grew hugely important.

In the operating room the patient was prepped and sedated.  A midline
incision was started.  Her peritoneal juices, under tremendous
pressure, hit the ceiling.  The surgeons quickly determined that she
had suffered an utter catastrophe:  her intestines, as a mass, were
black and dead -- from the ligament of Treitz to the splenic flexure.
The surgery lasted only minutes -- they closed their incision, as there
was nothing they could do.

In retrospect the patient likely developed peritonitis -- perhaps
related to her percutaneous feeding tube -- that had exploded, so
fulminant, so severe as to cause "peritoneal tamponade" -- pressure
inside the abdominal cavity much greater than arterial pressures to the
intestines, enought to choke off blood supply to nearly the entire
bowel.  The patient's condition was beyond critical.  She was terminal
-- no hope of recovery, no matter what.  Any further care would be best
deemed futile.

At this point the patient had become the surgeon's responsibility.  I
was no longer directly involved in her care (also I was a medicine
resident).  Yet I continued coming in each night, checking on her in
the intensive care unit.

The state had no provision for withdrawal of life support from its
wards -- all efforts, said the law, no matter what.  This "culture of
life" had come about ironically in part as a result of the Willowbrook
scandal.  The patient lingered on the ventilator.  The state's
appointed decision-maker for her demanded that the hospital "do
everything" to keep the patient alive -- knowingly against the
unanimous wishes of her family.

Nearly all hospitals have an ethics committee (also in part because of
the Willowbrook scandal) -- with a ground rule that anyone in the
institution may consult that committee.  I consulted it.

Naturally I asked if the ongoing intensive care treatment of this
patient was ethical (the committee said it wasn't) but I also asked
something like this -- what was the ethical and moral obligation of the
hospital to other patients under this state in light of this
circumstance?  The ethics committee said the law was wrong and should
be fought.  The hospital called its attorney and prepared to contest
the law.

The patient lingered for days.  Her massive organ necrosis drew flies.
She appeared utterly comatose and insensate, a small consolation.  Yet
her family gathered -- and suffered !!! -- oh their anguish!  -- layers
and layers and layers of cruel American indignities.  The judges
dragged their feet.  The patient died.

So much for individual efforts to reform the system.

=====

In recent days at work I have struggled at the bedside of a patient
with a particularly vicious ailment -- end-stage emphysema.  Like many
respiratory ailments, chronic obstructive pulmonary disease can so
cripple a body, yet the mind remains crisp.  Without mechanical
ventilation my patient will die.  She does not want life support.
Simple?  Not so, since, naturally, she does not want to die either.

Layer over this the (usual) profound abhorrence of nursing homes.  In
particular (if you've ever had the chance to visit one you can picture
it), this patient seems appalled at idea of the "chronic vent
facility."  She thinks she would rather die than live a day in such a
place.

She's thinking about all of this tonight.  So are her children.
Fortunately, if only this once, we have the luxury of a few more hours
for discussion.

But we don't have enough time, for this one woman, to build a new
system.

=====

The TV has blared 24/7, covering, plastering, the invasive treatments
and dying process and the fresh cadavers of Theresa Schiavo and now the
Pope.  The "great" thinkers, politicians and TV news producers love to
turn these into "wedge issues;"  as they run with the story they smell
the blood in the water -- our blood -- "on a roll."  Like the
sorcerer's apprentice they seize upon the chance to divide us against
ourselves, clobbering us with our own fears, and relishing the chance,
and feeling their own might.  (Their shrill pitch and clumsy hubris
betrays an especially imperial self-image.)  While the leaders of
American society fall all over themselves to hypocritically invoke the
"culture of life," and cone down upon a tragic solitary woman, to probe
and stir the murky depths of our fears, they must also do so blindly
and with a very long stick.

Of death and dying in America, there is much to fear.  Consider that
statistic that says that nearly 200,000 people die annually of medical
errors.  Consider the meltdown in healthcare -- and the righteous
mistrust of a medicsystem devoted to the profit motive.  Consider the
ICU deaths, intensive care stays longer than 10 days for a third or
more of those dying in hospital, with terrifying data to say that over
half of dying patients had moderate to severe pain at some point during
their last 3 days of life.  Consider that people would rather die than
experience for one day long term care (a nursing home) under
contemporary capitalism!  The objective and subjective data run deep
here and everybody knows it.  (Heretofore in human history such
"choices" did not exist -- kith and kin would shoulder the burden to
their maximum ability.)

Poke that with a stick, as the American leaders have just done, and
they might just invoke greater, not less, love and kindness.  Which is
the opposite of what they meant to do by invoking the "culture of
life."  No one looks to the present government as the solution anyway
-- why not undermined its stature even more?  As Americans rush this
week to fill out health care proxies and living wills -- an individual
means of protecting themselves against the state -- the idea dawns --
might they have conjured more human solidarity instead of more fear?

The contemporary death scene often arrives as yet another mean ambush,
an awkward and even absurd final coda to a long succession of days
richly and systematically shortchanged of human dignity.   Naturally
enough, human beings rise above it, finding each other despite their
bewildered grief.  That rising requires personal struggle, for this
cruel society begets cruel deaths that amount to another swindle,
momentarily redeemed by individual acts (ultimately beautiful
subversive acts) of human solidarity and love.  Yet the brutal system
rolls on.

I write as someone who has had the unusual privilege to have attended
many deaths (thanks to hospitals being the place where a third to half
(or more) of American deaths occur -- and with the hospice movement
still growing).  I have been humbled again and again by families and
individuals rising to the occasion, pulling together, finding their
humanity.  I have been appalled a few times at finding families sunk by
the occasion, devolving, fist-fighting, fractured apart.

On a good day America officially musters a mean-spirited, cowardly and
increasingly frail culture which quite lacks the capacity to catch
death's eye even for a moment.  You could call it the American "culture
of life."  It is a swift current to swim against, intellectually, this
culture of denial and viciousness and preventable suffering.  Yet we
all must take our turns as our parents, lovers, children, friends,
neighbors, coworkers, acquaintances, etc., meet their end -- we must
pass through the portals of the culture in which we live.  We know that
extraordinary personal efforts emerge in the face these hideous social
circumstances, yet officially speaking these profound personal acts
"wouldn't interest anybody, outside of a small circle of friends."

I overheard my three year-old talking with my five year old the other
day.  At one point in their conversation the younger one exclaimed "No!
 I am *not* going to die."  The older one responded with characteristic
emphasis:  "Yes you are.  We all die.  Because dying is part of life."
Out of the mouths of babes.

For those of us who have had a chance in life -- we will not forget
that great proportion of humanity's infants and children who suffer and
die daily of preventable causes under the keen eye of the "culture of
life" -- how we die depends greatly, if not entirely, upon how we have
lived.  Our individual lives grow despite being so distorted -- so
extirpated -- by the cruel minutiae of our social moment, our history
and our present.  So too our deaths.  Any serious consideration of
changing the reality of our present culture surrounding the end of life
conjures up the crying need for social change of revolutionary
proportions.  This society is failing us, cradle to grave.

Andy Coates

====

PS

"Then I realized a fundamental thing: For one to be a revolutionary
doctor or to be a revolutionary at all, there must first be a
revolution.  Isolated individual endeavor, for all its purity of
ideals, is of no use, and the desire to sacrifice an entire lifetime to
the noblest of ideals serves no purpose if one works alone, solitarily,
in some corner of America, fighting against adverse governments and
social conditions which prevent progress."  -- Che Guevara

http://www.monthlyreview.org/0105guevara.htm


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