Active and passive euthanasia in capitalist health care

Lou Paulsen wwchi at
Thu Dec 7 22:42:05 MST 2000

This is a really tough issue, and I am in a good position to see both sides.

As I work in healthcare, I have an opportunity to follow their
'establishment press' some.  The trend is really frightening to me.  Of
course it is all a matter of "following the money."  Under the old
"fee-for-service" plans, the financial incentive on the part of the
providers and suppliers was to provide as much healthcare as possible.  No,
don't let the patient die, use as many costly drugs and procedures as
possible, keep the patient alive as long as possible, and charge it all to
the patient's insurer.

Now, under capitation, everything is different.  For those who don't know
this term, it means that the provider which has contracted with the
insurer/managed care plan gets their money up front.  It is so much per
person.  The financial incentive is now to provide as little healthcare as
possible.  The best patient is the one who lives a long and healthy life,
paying his/her insurance premiums, and who then dies instantly without ever
visiting the doctor's office or spending a day in the hospital.  Coincident
with this shift in the financial regime, there is now a FLOOD of writing
about how important it is not to keep the patient alive unnecessarily, how
important it is not to give the patient and the relatives "false hope", how
providers have to address "end-of-life issues", be sure you have a living
will signed (this is a document giving your relatives the power to withhold
treatment on your behalf), establish "Do not resuscitate" orders and make
them stick, and so on.

Such matters are also the stuff of establishment
medical fiction (TV shows like "ER", for example).  The hero is the doctor
who helps the patient die.  The villain, or misguided person, is the
relative who keeps the patient alive.  It's a dramatic cultural shift in the
space of a few years.  Really, it is a shift from the pre-capitalist view of
human life (that there are unchanging moral duties toward life) to a very
market-oriented one (the choice to keep alive, or not to keep alive, is a
"free choice" like any other "choice" in this vast marketplace).

Now for the personal take!

Case 1: Alzheimer's disease!  This is my father.  He's 78.  He's in his
second assisted living center now, the one with a 'memory unit.'  He's very
confused and fearful now.  He's largely stopped eating, and his health has
turned downward.  My brother, who is on the scene and is the main
relative-in-charge, thinks he won't make it through the winter.  My brother
and I have talked about what to do about this: do we resuscitate, order tube
feeding, etc.  Fortunately we have clearly expressed wishes from him.  Over
many years of lucidity, his position was invariant: "If I start to lose my
mind, I don't want to go in any nursing home.  I don't want to live like
that.  I want you to take a shotgun and take me out in back of the house and
shoot me!  Just blow my brains out!"  We have ignored the letter of his
wishes, but we don't feel terribly guilty about agreeing not to force-feed
this confused, suffering, and terminally ill man.

On the other hand, are we disinterested parties?  Every month he lives costs
his estate $5000 or so.  It's a lot more than he makes from his Social
Security and pension.  There is property.  If he dies right away, we'll
inherit something.  Should we really be making the decision here?   If he
could be with his family all the time, he might be less paranoid and happier
and want to eat more.  But we can't be with him.  I'm 800 miles away.  My
brother has to work.  Before we tricked and harassed him into signing
himself into the assisted living center, my brother was driving himself
crazy being a one-man 24 hour care staff, trying to hide his guns, sabotage
his car, etc.  And he had no support in doing this from anyone else.  That's
the kind of system we live in.  It's a system where my father's illness is
transformed, by the kind of society we have, into a crushing burden upon
whatever family member chooses to accept responsibility, and the only way to
survive oneself is to evade the burden somehow.

Case 2.  Child with profound disabilities.  This is our nine-year-old son
Aaron.  He was born with an unpleasant metabolic disorder, genetically
based, called "OTC deficiency."  He has had a liver transplant to correct
this.  But unfortunately (as is characteristic with this fortunately rare
ailment), the initial buildup of ammonia in his blood between 3 and 10 days
of age, while they were diagnosing him and saving his life, caused serious
brain damage.  He has severe cerebral palsy.  He cannot speak, has very
rigid muscle tone, cannot walk, feed himself, or exert very much physical
control over his environment.  As to his intelligence, this is very hard to
say, because he is impaired in giving physical responses.  He can respond to
yes-or-no questions with hand signals that we have worked out.  Will he ever
be able to read?  It's hard to tell.  I went through an embarrassing stage
where I was convincing myself that he was doing all sorts of amazing things
a la "facilitated communication", before I looked more closer and realized
that I was doing it all myself.  (And I KNEW about the 'facilitated
communication' debacle before this too.  And I fooled myself anyway.)

There are plenty of people who have commiserated with us about the fact that
he is alive, and who are convinced that he would be better off dead because
he doesn't have much "quality of life."  We, on the other hand, love him
intensely, know his moods, know how much happiness he is capable of, and are
prepared to fight to the death to give him every chance of life.  In case
you don't know this, cerebral palsy pretty much customarily entails a host
of other medical conditions, treatments, operations, and so on.  Thus there
was a hip operation, he has a gastric button, he needed an operation on his
stomach because reflux was dissolving his lower esophagus, etc.  We think
that there is enough to Aaron's life to fight for it.  And of course we have
had to fight insurance companies, state agencies, etc.

Our attitude is contrary to the prevailing wisdom.  There is a whole lot of
stuff in the mainstream medical ethics literature about how some infants
with serious disorders should be allowed to die right away because it's not
"worth it" to keep them alive, they won't have sufficient quality of life,
they'll never be "productive citizens", they're a drain on society, etc.  In
the "E.R." episodes, the good parents are the ones who "love their children
enough to let them die."

Being the parent of a disabled child has put me more in touch with the
disability rights movement than I otherwise would be.  People should be
aware that groups like ADAPT are profoundly hostile to the movement to
encourage passive and active euthanasia.  They have done pickets of
Kervorkian and so on.  They argue that if society were ready to take on the
tasks of actually making life pleasant for people with serious disabilities
and illnesses, by providing in-home aides, assistive technology, etc., then
you would not have so many people who have concluded that life is too
miserable to live and/or that they are too much of a burden on their
families - there are undoubtedly people who are literally killing themselves
to spare their families a financial burden, and the prevailing capitalist
wisdom is to help them do this.

Case 3:  "locked-in syndrome."  This was my wife's mother.  She was an
80-year-old woman  with a history of circulatory disease; she had had bypass
surgery and a stroke, but was still somewhat active.  In August she had a
massive stroke in the brainstem.  The effect was to leave her conscious and
alert, but incapable of all voluntary movement except for eye blinking.
This is a permanent condition, but not necessarily terminal if you are kept
fed and hydrated.

If you want to read about this condition, there is a book called "The Diving
Bell and the Butterfly", which was written by Jean-Dominique Bauby, a French
editor who was hit with this in his 40's.  He dictated it to visitors using
an eye-blink code.  Well, this was a man who had been in good health.  My
mother-in-law, on the other hand, was a frail woman who had never completely
recovered from the earlier stroke.  In the days following her massive
stroke, she was initially comatose, then became more awake as the days
progressed.  But we never got to the stage of communicating with her by
code, really.  I don't know if she would have been capable of that.  But as
soon as the nature of the problem became apparent, my wife and her siblings
set to work to help her die.  They believed this was what she would want, as
she had previously expressed it.  They also believed that she DID want
'release', as she was lying there, currently aware of her situation.  (Which
is a slightly different thing.)  They also believed that her condition was
so terrible that nobody could possibly want to live like that.  Which is a
different thing yet, and more subject to dispute.  I put in a standing
request with my wife that if anything like this should happen to me, she
should not jump to conclusions.

They believed that she wanted to die, and they believed that it would be
"inhumane" to try to work with her and set up a communications scheme and
ask her directly.  The way to help her to die was to cut off her food and
water.  The hospital was quite willing to help in this.  At one point, a
doctor asked her - in a very compassionate way - if she would prefer to have
the tubes taken out and "just rest".  As it has been reported to me, she
gave a very clear yes-blink to this.

And after ten days without food or water, she actually did die.  This was in
a hospice unit.  She was given medication for pain, and we are given to
believe that she did not suffer much.

There are still some lingering conflicted feelings about all this.  This is
one of those stories whose meaning depends a lot on how you tell it, almost
on the "tone of voice" you use.  On the one hand, it is really a story about
how a woman's husband and children came together and helped to cut short her
suffering.  I don't believe that anyone, including the doctors, was acting
out of malice or self-interest or anything but love.  On the other hand,
someone can easily tell it in a more ironic way.  It really was a lot easier
for us all to have her die right then, rather than having to cope with the
crushing problems which having a living relative in such a condition would
pose.  None of the legal safeguards which are supposed to protect a person
from being starved to death by her relatives really came into play.  There
was consensus, or conspiracy, among the relatives, the hospital, the
doctors.  This was a Catholic hospital, by the way.  So if you are afraid
that Catholic hospitals are going to mercilessly keep you alive against your
will, in service to outworn dogmas, be assured that that is not the trend.
We had been worried that there would be trouble transferring her to a
hospice unit, since hospice units are for the terminally ill, and locked-in
syndrome is not a terminal illness, you can live a long time with it as long
as the water and nutrition are provided.  But the worries were groundless.
There were no objections.  Everyone moved the process along.

For what it's worth, I think the relatives probably had it right: I think
she probably did not want to live like that.  Of course if she HAD wanted to
live, that was too bad for her, because she really didn't have much choice
in the matter.  It's pretty horrible to think that she might have had second
thoughts after about two days without food, and might have wished to stick
around and try out the eye-blinking lifestyle and see how it worked, and
then make a more informed decision.  Well, I'd better not dwell on that.
And is it plausible that, at her age and in her vitiated condition, she was
really thinking that way?  I suppose not.

In any case, the social reality is that Medicare will pay for your hospice
bills while you die.  But if you decide that you actually want to live with
locked-in syndrome, it is much harder getting them to pay for aides, people
to take dictation from your eye-blinks, computers that can read your eye
blinks, people to attend to your needs for however many months or years you
will survive.

I guess this is sort of an extended personal meditation on the question of
"choice".  I am always distrustful of the word, because capitalism is
founded on the religion of "free choice", but these choices are always made
within a completely constricting framework which gives you a very bad set of
choices.  What is this "freedom"?  What causes people to make the "free
choices" that they do?   Yes, it is better to have choice than to have no
choice; better "bourgeois" individual choice than "feudal" inflexibility.
But how much of a choice are we really getting?   And who is really doing
the choosing?  We have to keep our critical perspective.

Lou Paulsen

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