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The Value of Minor Impairments Like Alzheimer’s Disease, or
Another Look at the Kevorkian Question and the American Answer

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A Little Life Lesson

I am eternally grateful
to the little lady about eighty
whose name I never knew
who taught me by her mere presence,
her persistence in life,
that we live our lives at least until we die
(perhaps beyond that).
I worked the night shift
at a convalescent hospital
as an orderly
in the days long before
"death with dignity,"
Kevorkian,
or even Karen Anne Quinlan.
No one wanted to go into "that room"
because it smelled so strongly.
In a crib in the middle of the room
lay the diminutive remains
of a petite woman
who had been comatose for some weeks.
They had abandoned
feeding or hydrating her,
gave her no medication or treatment,
just occasionally
moistened her lips with a bit of water
(but she could not respond
even reflexly
to swallow or to lick the drops).
Her limbs were wasted of muscle mass,
curled in flexion,
rigid,
cold,
black with gangrene;
but there was a hot axis
from her heart to her head,
pink and furiously pumping,
and her chest moved
shallowly but rapidly
in and out,
a little bellows
fanning the flames
of the oven
of her chest and neck and face.

Late at night,
after midnight,
after the patients slept,
I found myself sitting in that room
just to be in her presence.
As I sat quietly in the dark
I could feel
her determination to continue living
and I sat rapt in admiration
not only for who she had been
(for I realized she must have been a giant),
but for who she was at that moment,
clear and present to me,
my teacher of life
at its most basic level.
Not just her waning body
but her whole person
was with me in that little room.
The smell?
It evaporated in the radiance of her being there.

***

Repeatedly I have tried to clarify to you that when my memory is shaky nothing is reliable for me.  Let me try that again:  When I can’t rely on my silly old brain I lose every thing.  Every single thing disintegrates before me, is unreliable to me.  Everything.  Got it, now?

My grandmother taught me by living it.  She would lie down to sleep, but before she had fully settled down she sat up again unsure if she had locked the front door.  She got out of bed, went downstairs, checked the door, then returned to retire.  Of course when she lay down again she no longer remembered if she had locked the door, so as soon as her head hit the pillow she had again to arise, go downstairs to lock the door, but, of course on re-retiring she had to repeat her reasonable behavior ad infinitum, which rendered it unreasonable behavior simply because she couldn’t remember one simple thing.

She kept her pearls under the mattress for safety, so she kept her teeth with them.  (Similar, aren’t they, teeth and pearls?)  When she needed to eat I had to remind her her teeth were under the mattress.  She felt the need to check frequently (as often as every five minutes) to see her pearls were not gone.  Who knows who might have taken them at any moment?

She had always been my favorite cook, but now she could no longer cook at all.  She burned the water for her cup of instant Sanka because she could not get the timing down.  Not knowing if the door were locked had rendered her genuinely paranoid so that she was afraid to eat anything I cooked.  (It hurt my feelings because I am a good cook and her life-long friend, but there was no getting around her refusal to eat what I prepared.  How sweetly she declined, just not hungry at that moment, she said.  Because of the overarching fear, she was really convinced I would poison her.)  She survived on burned Sanka and halves of cheese sandwiches (one slice of bread, halved, one half piece of pre-sliced cheese, put together quickly enough she didn’t forget what she was doing).

Murphy’s Law applies to all situations, which is that the exception will come when you bet it won’t and if you wash your car it rains.  Then I ate breakfast at home only on Saturdays or Sundays and (prior to my awareness cholesterol would kill me) had a couple eggs and a couple strips of bacon.  My grandmother never kept kosher but she had never had the slightest morsel of pork or shrimp.  (Why are shrimp not kosher?  Because they haven’t a cloven hoof, perhaps?)

Rather than to criticize my consumption of pork she supported it.  My mother lived in the same part of town, came by any given day, did my grandmother’s marketing.  With every list she included a pound of bacon for my breakfasts.  One Saturday I found myself with three pounds of bacon, a few extra minutes and a creative urge, so I blanched at least a pound of it, mixed it with a pound of ground beef, green pepper, onion, seasoned it without subtlety and baked it up as a meat loaf.

I left it on a rack on the kitchen table to cool and went out for a while.  When I returned I saw a sizable slab carefully had been extracted.  I went up to my grandmother’s room where she sat in her vibrating recliner watching her remote control color television, satisfied, grinning with her full width of gums.

“That is a delicious meat loaf you made.”

“I don’t want to hurt your feelings, but I’ve got to tell you there was about a pound of bacon in there.”

“Naw.  Go on.  Don’t pull my leg.”

“No, it’s true.  I wouldn’t lie to you.”

“It’s a good meat loaf.  Make it again.  And don’t pull my leg.”

“Yes, Ma’am.”

A few years later, toting her, her chair and her television from one nursing home to another, she and I stopped for a hamburger.

“And you call yourself a doctor!  If you really cared you would give me barbiturates to kill myself.”

“From whom do you think I got such ethical principles?  You are my mentor, so blame yourself and eat your burger.”

We got to the nursing home early in the evening.  The aspect of sunset at a picture window elicited from her a lengthy recitation from Tennyson’s “Crossing the Bar.”  She still couldn’t find her teeth.

She was all kinds of powerful stuff through much of her life.  I remember especially her gradual dwindling, but dwindling though it may have been, it was not diminishment of personhood.  What I mean is even though less strong, less quick she was not less valid.  I have watched my grandmother and hundreds of others become dependent on grown children, nursing assistance, but they didn’t lose who they were even when comatose.

When I was a medical student I worked one summer as an orderly in a convalescent hospital.  The staff steered clear of one back corner room, so I looked in to see how come.  Comatose in a bed with side-rails was the curled emaciated and dehydrated body of a little old woman.  The atmosphere reeked from her gangrenous extremities and bedsores.  They could not feed her in those days (before intravenous hyperalimentation), just moistened her lips occasionally.  Late at night if the other patients were quiet and I had a little time I would go into that room to sit with her.  She neither spoke nor moved, but despite her cold black curled limbs the axis from her chest to her head kept pumping away like a heart-lung preparation might in a laboratory, a powerful engine day after day.  I did not know her name nor anything about her past, but as I sat in the dark beside her I became aware of her great strength and integrity in the present, each moment her heart pumping out a next pulsation, then a next.  When I allowed myself to be in her presence quietly I came to admire and thank her as my teacher of the underlying orderly persistence of life.  I didn’t have to look for or ask after her children, her grandchildren or her great-grandchildren (obedient student I, nosy for concrete historic details) for I knew already the strength with which she had engendered, nourished and taught them.  I was deeply blessed to have met her.

It is not my purpose here to reminisce nor unrealistically to lull you into believing there is nothing painful about disease and degeneration.  My purpose is simply to point out there are ways to be flexible in the face of change, and there are benefits to be taken as partial recompense for the costs of decay or injury.  My grandmother suffered Alzheimer’s disease and we all suffered with her.  I do not minimize the importance of the disease by alluding to it as a “minor impairment” but wish merely to emphasize that personal integrity, respectability and validity are not eradicated by any disease condition.

We tend to be quite phobic about impairments.  We wish we had aborted any imperfect fetus.  We are revolted and afraid of all sorts of handicaps as if they were contagious.  We fear the changes which come with age, as if we believed we should be immutable, perfect, immortal.  As usual, we want what we want rather than what is.

It is true that impairment is costly.  One simple function removed, say the capacity for recent or short-term memory, and suddenly a sane and intelligent person is rendered incompetent, paranoid and very depressed.  Crack one hip bone and an independent healthy person may become anambulatory, dependent, at risk of dying soon from the inertia of it all, deconditioning, impending pneumonia.

It is not necessary that impairment result in disaster.  I think it takes three things to protect against it:  avoiding abandonment from others, avoiding abandonment from self, and doing what is before us.  These are processes of willing (even joyful) acceptance of what is, assessment, purposeful action and cooperation, never condemnation and rejection.  We don’t have to give up living just because it seems difficult; if we are mortal we will die eventually despite our ongoing efforts.

We expect some sort of unreal perfection from each other, or at least that the other keep her or his imperfections to her or his self.  We don’t want to have to help anyone else, don’t want to be asked for anything inconvenient.  If we are asked to help we likely will clumsily, politely and haughtily decline.

We don’t want to become dependent ourselves, either.  It threatens sense of self, threatens our underlying American lie that we can do anything we put our minds to.  We cannot.  We cannot live perfect and we cannot live forever.  Perhaps the problem is as simple as the discrepancy between expecting perfection and accepting what really is.

Where did we get such ideas as the hidden expectation of perfection?  Where did we get the idea that it is intolerable to live in a reality in which we go along with what is beyond our power?  Do we really believe we can rule the weather, wrest wealth from the environment and all life about us, conquer disease and death?

Not everyone has always lived this way, perhaps almost no one before nineteenth century America.  (Sad to say, Waldo.)  We are so used to our own assumptions it is difficult for us to consider any alternative or to acknowledge our own rigidities.  What harm can come from inquiring?  Let’s try.

Perhaps the unifying assumption is that those who are imperfect should die.  That sounds extreme, so we don’t think that way out loud.  Instead we say those who are deficient should improve, become proficient.  The homeless should get jobs, the illiterate should learn to read, the potentially ill should prevent disease, the already ill should become well.  It is difficult to expect the victims of Alzheimer’s to get new brainpower from degenerating brains, so we expect them to dwindle and die.  It is difficult to expect those with amyotrophic lateral sclerosis or progressive multiple sclerosis to improve, so we are willing to send them to Kevorkian.

I choose to focus on the problem of hidden expectations, not on technical reversal of chronic progressive disease.  I believe the question of underlying expectations is prior to questions of technique or policy.  It is plausible to allow afflicted persons to choose to end their lives, but it is not necessary to promote either assisted suicide or its evil twin, a prolonged dying without comfort or dignity.  What we tend to overlook in arguments about euthanasia and abortion is the self-fulfilling effect of expectations.  Defining ‘quality of life’ or justifying life-ending actions depends on expectations which too often deny mortality and impairment as given conditions in every individual’s existence.

These arguments should center on and illuminate our understandings of freedom, but unless our underlying expectations are free to be scrutinized, argument will produce only noise and heat and dust and blood, not freedom.  The underlying assumptions we are reluctant to acknowledge are not so simple, that we expect to be free of impairment and pain, that it is acceptable to do away with those who seem dependent, that individually we are responsible to avoid becoming imperfect and if any of us becomes so we should do away with ourselves.  These add up to the simple denial that we are mortal and imperfect.

We are each perfectly who we are.  Our being is just as it is, characterized by an intermixture of growth and degeneration (as Aristotle noted); it is mainly our expectations which are troublesome, for they might be readjusted.  They lead to depression and frustration for most every one of us.  If we were more practiced at the acceptance of what is, rather than dwindling in inertia we would probably free much energy for growth and enjoyment.  This is the essential contribution of Sigmund Freud, no longer very popular, that to be well is to free energy from pathologic mechanisms of denial and repression in order to grow and work and love.

How does Freud shed light on Kevorkian?  How do we make use of their ideas and actions?  What are the underlying problems of expectations and self-fulfilling prophecies we encounter in policies of abortion, euthanasia (active and passive) and allocation of health care?  To what fruitful options have we been blinded?

The problem of killing is different from the problem of dying.  In some cases we propose to kill, but look for ways to call that killing not-killing.  Abortion is always killing, which is not the same as to say it is murder nor that it is bad.  Assisted suicide is tantamount to killing.  Perhaps rationing of health care also is killing, by extension (or refusal to extend).  We can’t know yet in this discussion what is good or bad.  First we must look for what is so, not how we shall judge it.  What we quickly see about each of these is that there are many factors, many outcomes and repercussions, not all of which we are able to comprehend in advance.

The key to one aspect of the dilemma is the Karen Anne Quinlan Principle.  She lay comatose on life supports and everyone was convinced she would never awaken, but if the plug were pulled (as we say) she would certainly die.  The suit was brought to the New Jersey court in order to assess whether her inevitable death would be considered murder, in order to protect caregivers and family from potential criminal charges.  It was decided it would not be murder, so with the ceremony of national press coverage the plug was pulled.  The unanticipated occurred--she did not die.  Karen Anne Quinlan lived comatose for several more years, which illustrates that when there is no killing the demise of the human individual depends on factors uncontrolled even by doctors and lawyers.  Karen Anne Quinlan showed it was between herself and God.

(The more recent hoopla over Terri Schiavo sheds light on the same dark recesses, that she seems to have been kept alive for years on the basis of the false hypothesis that she was somehow aware—a modern inverse variation of Edgar Allen Poe’s grotesque fantasy “The Facts in the Case of M. Valdemar”, or another favorite nineteenth century example, Oscar Wilde’s “The Picture of Dorian Gray”.  Another related principle I keep in mind in my medical practice I call “the Raskolnikov principle” [from Dostoyevsky’s Crime and Punishment], that it is not very easy to kill a little old lady for they are not at all so delicate as they may look.)

It is plausible that capital punishment can never be strictly within the law, but represents the breakdown of the legal system (as Robert Walker taught me), failure of rehabilitation and correction in that case in which we feel forced to execute a criminal.  That does not mean that such killing is always wrong.  Similarly, if our abilities are exhausted to nurture, support and heal the unfortunate unwanted unborn, the progressively ill or disabled, or if an individual sees herself or himself irretrievably deprived of what can be called life it may not be wrong to end it.  Also, it may not be right or necessary to do so.

When we are relieved of the delusion we righteously and reliably wield the power of life and death over ourselves and others, many clinical and political ethical dilemmas change shape dramatically.  If we acknowledge we are mortal, we cannot be responsible to stay alive forever or keep each other alive somehow.  If we see the power resides in the body and soul of the individual which we imperfectly understand, in powers of the real world beyond our control, then we will take a different attitude toward killing and dying.  (We likely will eschew killing, yet invest our energy in processes and relationships of dying as valid processes of life itself, with which we are familiar.)

One of the most obnoxious abuses of the truth of the individual life is when doctors say or are understood to say a person has only some limited time to live (“She has six months.”  “Well, now, you should be getting your affairs in order.”  “He just didn’t eat enough spinach.”)  Doctors don’t know enough to say that with authority, ever.  Usually it is their clumsy attempt to communicate what seems likely, to the patient and others who care, so their expectations and actions can be more realistic and effective.  Said slightly wrong, or heard that way, good intentions cause hellish agony for many.  We have no perfect knowledge or control over dying, so we must set aside the wishes which can interfere in living well our last days and hours.

To acknowledge mortality and impairment as ordinary and inevitable aspects of our lives (every single one, even your own) offers us relief from much guilt and worry.  It may be okay for a person to choose to die and okay for another to help him, but it is not necessary to agonize over such projects, for that person will, indeed, die.  It may be okay for a woman to exercise autonomy over her own body on the basis of rational arguments, irrational arguments, or no arguments whatsoever, but when we realize women have often terminated pregnancies in all times and places, or have actively or passively allowed dependent infants to die (as many species seem to do--thanks, Jane Goodall, for your brave research), we can give up pretending to decide for them and can use our energies to support them or their surviving children as fellow living beings.  The already-dead need no such active care.

Perceptions shift when we are willing to see new things.  Our world is like an ever-changing kaleidoscope which cannot be seen in truth unless we look anew each moment.  We cannot afford such syllogisms as: 

“Abortion is killing, killing is wrong, therefore abortion is wrong.”
“We can do anything we set our minds to, disease is undesirable, therefore we can and shall eradicate all disease.” 

We are welcome to see that acceptance and assistance of each individual is always within our reach, no matter what limitations we face in time, energy, knowledge or dollars; for it is the processes of sharing and cooperation which we have influence on, not the absolute judgment of what is good or bad, not the determination of future conditions and events, not power over life versus death.

The nature of moral decisions and actions changes when the nature of underlying assumptions changes.  When we give up the conceit that we can dictate the outcomes of our histories, and instead concentrate on acting with integrity in the flow of our lives and interactions, we find circumstances of facing death not comfortable but acceptable, and moral dilemmas give way to assurance life is in earnest, pretensions unnecessary.

The decision what to do comes from assessment of what will be good.  If we are not smart enough or strong enough to know all variables, predict all outcomes or force our wishes to materialize, we must find good not in intentions or outcomes but in the processes by which we live.  The point is to be the best we can, not to do the best we can.

Being our best is not to be perfect nor to enforce guarantees, but to be willing, open and brave in facing the realities of our present existences.  Flexibility and acceptance come from our acknowledgment we are not perfect, don’t know the good ahead of time with perfect mastery.  In other words, it is uncertainty which  supports freedom to change and grow.

We seek moral consensus, but fixed prescriptions for behavior will always lead us to expect conformity, a mirage of perfection we cannot grasp.  We cannot live predictably not because we are faulty but because it is not in our natures successfully to be rigid.  Our consensus should be in the authentically American valuing of individual responsibility and freedom.  We can trust each other to be the best we can, avoid superficial moral condemnation of each other’s behaviors.

If we are free to respond to the ever-changing current circumstance we will be more free to accept what is before us and also more free to try to change it if we feel we must.  If we are free to see we are always impaired and imperfect we will not be so anxious to kill ourselves and each other, or when we choose to do so we will understand we have taken our best shot at what seems at the moment our best action.  Freedom to grow and work and love lets us validate and accept, rather than justify, our decisions and actions.

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