By: Jim Taylor
Everyone has opinions about parental responsibilities,
human dignity, self-determination, and what it means to be human. But lofty
principles commonly run aground on the hard rock of individual instances.
Three years ago, at her
parents' request, surgeons at Seattle's Children's Hospital removed
six-year-old Ashley's uterus, appendix, and parts of her breasts, and put her
on heavy doses of estrogen, to prevent her from maturing into a woman.
Last October, the
doctors published their experience in the medical journal "Archives of
Pediatrics and Adolescent Medicine."
The subject instantly
topped Google's Health section, with 400 new articles and 1.6 million hits in
the first 48 hours.
Advocates for the
disabled protested that once again able-bodied persons had made decisions as if
the disabled were less than fully human.
Critics wondered how
involuntary removal of a child's reproductive organs fitted with the
physicians' oath to "do no harm."
Historians recalled the
eugenics movements of the 1930s, when provinces like
ASHLEY'S SITUATION
In response, Ashley's
parents published a web page, http://ashleytreatment.spaces.live.com/blog.
Ashley was born with
severe "static encephalopathy." Her brain and coordination will never
develop beyond a three-month-old level. Now nine, says
the web page, she "cannot keep her head up, roll or change her sleeping
position, hold a toy, or sit up by herself, let alone walk or talk. She is tube
fed and depends on her caregivers in every way."
Ashley is not an
inanimate blob, however. She responds to touch and to cuddling. She can gurgle
and coo and express pleasure. Her parents write, "We think she recognizes
us but can't be sure." She seems to like being among people, and "in
return she inspires abundant love in our hearts; she is such a blessing in our
life!"
The hospital's 40-member
ethics committee considered the parents' request and agreed that the treatment
was in Ashley's best interest.
Without treatment,
Ashley would probably mature into a 5' 6", 135-pound, large-breasted
woman. With treatment she will remain under 4' 5" and 75 pounds.
Keeping her smaller and
lighter makes her easier to lift, move, and bathe, easier to have her present
with other family members. Removing her reproductive organs eliminates her
menstrual cycle. How, after all, would you explain to a wailing three-month
infant that menstrual cramps are natural?
LOFTY PRINCIPLES
Some object that medical
procedures require a patient's informed consent. Theoretically, yes. Practically, no.
All parents make
decisions for their children. They decide what their children will eat and
wear. They authorize antibiotics or chemotherapy. They seek reconstructive
surgery for cleft palate or deformed limbs.
At both ends of life, in
fact, infants and elderly have decisions made for them. Adults who reject that
responsibility are charged with neglect.
George Dvorsky, a director of the Institute for Ethics and
Emerging Technologies, initially considered Ashley's treatment "bizarre
and even extreme. My own initial reaction was negative; any time I hear about
constraints (or what might even be considered mutilation) being deliberately
imposed upon someone my alarm bells go off."
Later, Dvorsky changed his mind. "If the concern has to do
with the girl's dignity being violated, then I have to protest that the girl
lacks the cognitive capacity to experience any sense of indignity. Nor do I
believe this is somehow demeaning or undignified to humanity in general.
"The treatment is
not what is grotesque here. Rather, it is the prospect of having a full-grown
and fertile woman endowed with the mind of a baby."
Another lofty-sounding
principle protests that stunting Ashley's growth "interferes with
nature."
In fact, every medical
procedure interferes with nature. Otherwise, we should simply let cancer run
its course. In Ashley's case, interference started when she was first put on a
feeding tube.
Other objections miss
the point entirely.
"We would never do
this to a normal six-year-old," said one talk-show interviewee. Well, duh!
The treatment, said one
another, denies Ashley "the opportunity of growing into a beautiful young
woman." Left alone, the best Ashley could be is a beautiful 135-pound
infant. But she would never know she's beautiful.
WHAT IS "HUMAN"?
In 1637, philosopher
Rene Descartes reasoned that the only proof of his existence was his awareness
of his own consciousness. "I think," he declared, "therefore I
am."
By his definition,
Ashley might not qualify as human. Is a three-month-old infant conscious of
being conscious?
I asked a group of
friends what it meant to be human. We agreed that it didn't depend on walking,
talking, or solving Sudoku puzzles.
"The ability to
receive and give love," suggested one man.
"A golden retriever
can do that," replied his wife.
A golden retriever also
has more reasoning power than Ashley. It's certainly more capable of looking
after itself. But no one protests about neutering a dog.
IN ANOTHER'S SHOES
Even
some supportive letters contained internal flaws in reasoning. "Unless you are living the experience. you have no clue what it is like to be the bedridden child
or their caregivers," said one letter.
"Exactly,"
said my wife Joan, thinking about our own experience with a son who died of
cystic fibrosis at the age of 21.
We cannot know what we
would do in their shoes, because we're not in their shoes.
But that truth also
implies that only a rapist, murderer, or embezzler can judge when rape, murder,
or fraud are wrong.
We can judge. Perhaps we
must judge. The alternative is to allow anyone to do anything to anyone else.
Which
leaves only motivation.
Did Ashley's parents
request her treatment for her sake, or for their own convenience?
Did Robert Latimer end
his daughter Tracy's life for her sake, or for his?
In another context, was
German theologian Dietrich Bonhoeffer right in
plotting to murder Hitler?
Black-and-white
distinctions don't work well in sepia-toned scenarios.
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Copyright © 2007 by Jim Taylor. Non-profit use in congregations and study
groups permitted; all other rights reserved.
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If you have comments or questions about Jim's column, write to him directly at jimt@quixotic.ca