Friday, November 13, 1998
Terminally ill should live life to fullest
MEDICINE: Love, caring key to mental well-being in our
fragmented society
By Eric Achtyes
Sixty-seven-year-old Joseph Saikewicz lies in a state hospital
in Massachusetts, dying from leukemia. Chemotherapy, the indicated
treatment, has a 30 to 40 percent chance of remission which could
last from two to 13 months.
This story, while familiar, is unique in that Joseph has been
severely retarded from birth, never possessing an IQ greater than
ten or a mental capacity higher than that of a child aged two years
and eight months. His family does not want to be involved in
decisions regarding his care, so a legal guardian has been
appointed by the courts.
The guardian decides that Mr. Saikewicz, who has lived in a
state-funded institution for over 40 years, would not benefit
sufficiently from this uncomfortable, expensive and perhaps
unhelpful form of treatment. The disease is allowed to run its
course, and Joseph Saikewicz is allowed to die.
Much has been said recently to advocate the right to choose
between life and death. Paternalistic attitudes have been
discredited and autonomy exalted. Though the state of Michigan
recently rejected a proposition that would make physician-assisted
suicide legal in the home of Dr. Jack Kevorkian, various other
states have already implemented such policies and our country is
just one or two court decisions away from legalizing passive
euthanasia. Active euthanasia, crypthanasia (putting someone to
death without their informed consent) and worse may soon
follow.
Since life is a necessary precondition for liberty and the
pursuit of happiness, it seems odd that our judicial system would
not actively seek to preserve this most basic of human rights.
At an even deeper level, I find it profoundly sad that any human
being would feel like such a burden that they would prefer death to
a life of dependency on others. It seems that the virtues of
discipline and unity in struggles have been so completely lost in
our society that today death is now legitimized as an "easy" way
out.
Salmon still struggle upstream to spawn, even though it would be
much less trouble to stay in the ocean. A fox will still gnaw off
its own paw to escape a hunter’s trap, even though it would be much
easier to lay down and die. The very nature of things around us
tells us that death is an enemy to be avoided at all costs!
So what has led our "enlightened" society to dictate that
certain lives are no longer worth living? While a rigorous inquiry
into the status of the nature of humankind is beyond the scope of
this letter, I do believe that our current problem could be
remedied in part if we could restore our ability to relate to one
another as members of a community of shared blessings and
trials.
There is no doubt that caring day in and day out for someone
with a severe disability is difficult and tiring.
Caregivers of extremely needy individuals require time to rest,
time for fun, and time away just like anyone else. Given this,
could we not propose the idea that, for one night every month,
those of us who are not full-time caregivers perform the labor of
these burdened individuals so that they could go and enjoy a night
out or a weekend away? Would it impose so much on my free time that
I would not be willing to help my fellow human beings cope with
their suffering?
In this new relationship, I would become more sensitive to the
needs of the full-time caregiver as well as to the disabled
individual. The disabled person would profit from more outside
contact and, by seeing her caregivers maintaining some of their
leisure time activities, would not feel as though she was as much
of a burden. A commitment to learn proper care techniques is all
that would be required of me.
A successful model of such a program was held at a campground
where I was employed as a lifeguard. The first week summer was
designated Special Needs Week. Families caring for patients with
disabilities ranging from mildly handicapped to severe retardation
were invited to come and camp. Good care for the special needs
campers was assured by pairing each camper with an adolescent
"buddy" who would spend the week with them, taking care of them and
allowing the parents time to relax.
These handicapped children and adults taught me lessons that I
could not have learned in any other way. They showed me the simple
joys of human experience devoid of all the complicating factors
present in my own life.
This program continues to be enormously successful, and although
it is sponsored by the Christian Reformed Church, there is no
reason why other programs like it could not be established around
the country to match caring citizens with needy caregivers. Such a
shared educational experience would serve to unite our society in
the effort to prolong life, rather than seeking to justify death as
a way out of a painful or difficult situation.
I realize that many of the patients over whom the present
right-to-die discussion is focused face terminal illnesses or
persistent vegetative states. Their conditions are far worse than
those of most of these campers. Nevertheless, I believe true value
can be found in the lives of even the most severe cases.
Philosophically speaking, I am unaware why certain lives, or any
other for that matter, should be worth anything. Value is something
we assign based upon comparisons. One car, one coin, one piece of
clothing is more rare, more complex, more whatever than another,
and so it is associated with higher value. But do these comparisons
have any meaning in the ultimate sense? Is a flower really more
valuable than a pebble just because it is alive or pretty?
The only way these comparisons can have any ultimate validity is
if there is a "best" thing from which to derive the other
comparisons, i.e. a platonic form, or perhaps a God. Alternatively,
one is left to manufacture meaning and value for one’s own life.
But this too is arbitrary and ultimately meaningless.
Mother Teresa saw the value in all human life as created in the
"image of God" and actually had the guts to live out those beliefs.
She teaches: "I will remember always the last time I visited
Venezuela in South America. A rich family had given the sisters
land to build a children’s home, so I went to thank them. And there
in the family I found their eldest child was terribly disabled. And
I asked the mother ‘What is the child’s name?’ The mother answered,
‘Professor of Love, because this child is teaching us the whole
time how to express love in action.’ There was a beautiful smile on
the mother’s face. Professor of Love they called their child, so
terribly disabled, so disfigured."
The gradual lessening of the worth attributed to human life is
not the result of our ability to artificially extend life further
than we could before, for that is a blessing. Rather, it is due to
the isolationism that plagues our society.
People, either voluntarily or involuntarily, spend more time
with their computer, car or dog than with those fellow human beings
who mean the most to them. We place the pursuit of unnecessary
material goods or the promotion of our careers over and above our
family and our friends. The words of St. Francis of Assisi jolt us
back to our senses. He reminds us that it is only "in giving that
we receive."
No, we have no need for Dr. Death. Rather we have a need for
each other.
The lessons of love and interdependence are ones that will not
die no matter how far the human race "evolves". There is Truth, and
when it is found, one must cling to it with all one’s might. I
realize this may sound like a piece of grandmother’s advice that
"intelligent" young people besmirkingly relegate to the proper
corner of old-fashionisms.
But I believe these lessons to be true, and I find it tragic
that the wisdom they contain seems to be growing ever more dim in
the neon enlightenment of 21st-century America.
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