What is the right decision and who should make it?
The doctors caring for the twins felt that, ethically, it was
incumbent on them to save the life of Jodie and carry out the surgery. Last week, the
London Court of Appeal agreed.
Commentary by ADAM TANOUS
Jodie and Mary, the cheery sounding and fictional names given to a
pair of conjoined twins belie the horrible circumstance of their lives. Their dilemma is
as real and grim as life gets.
Born in Manchester, England, on Aug. 8, the two girls entered the
world joined at the lower abdomen.
Mary was born without a functioning heart and lungs and so depends
entirely on Jodie. Mary has only what has been reported as a "primitive brain."
Doctors have determined that if the two are not surgically separated within a few months
both children will die. Jodie’s heart and lungs simply can’t carry the strain of
supporting both bodies. And, of course, with the surgery, Mary loses her source of
lifeblood and will certainly die.
The parents of the children, their names have not been released, are
from the Mediterranean island of Malta. When they discovered the state of their twins in
the womb, they went to England to get the best medical care possible. When they were
apprised of the options, the couple, devout Roman Catholics, decided to forgo the surgery
and "follow God’s will," even though it meant both children would die.
The doctors caring for the twins felt that, ethically, it was
incumbent on them to save the life of Jodie and carry out the surgery. Last week, the
London Court of Appeal agreed.
There really are two intertwined issues at hand here: what should be
the right decision and who should make that decision. There are no good solutions to this
one. I suppose if I had to choose, though, I would opt for the course that preserves life.
Opponents to the ruling argued that to preserve life one has to
intentionally kill another. The court saw it differently, saying that the surgery amounted
to "withdrawal of care," not intentional killing. In the same vein, I
wouldn’t call unplugging a respirator from a brain-dead family member murder. Mary is
not a viable person without the heart and lungs of Jodie. The cruel reality is that
Mary’s effective respirator, Jodie, cannot continue on in this role. One could even
go so far as say that Mary was killing Jodie, not intentionally, but in effect.
Unfortunately, we have to deal with relative moralities here; neither
course absolves one of guilt and uncertainty. Given that Mary is doomed in both
situations, allowing her to die seems less immoral than denying Jodie her very real chance
at life.
More to the point is that inaction—when one has the capability
and means to remedy a situation—should be considered, in effect, an action. It is the
same difficulty I would have with a Christian Scientist family that refused medical care
to a child dying an avoidable death. When it comes to withholding medical care, negligence
is as morally questionable as other more assertive actions.
To say that something is "God’s will" when a situation
is beyond all human remedy is understandable. Less defensible, I think, is to take that
inactive position when something can be done, especially if it is the case of a parent
deciding for a child. It seems that once these girls were born they were immediately
thrust into a conflict: between a right to life and the rights of parents to live by the
religion of their choosing.
Which gets us into very murky and inflammatory territory. At times, I
wonder if morality is not more fundamental than religion, that morality needs to exist
outside the prism of religion. Sometimes I find it hard to understand the practices of
some religions: those that withhold medical care from their children, those that deny
women basic human rights, those that mutilate female genitalia. There have to be some
standards for what is right and wrong, and they must cut across all religions. These
standards are basically reflected in our legal system, but sometimes they do not keep pace
with technological and social changes.
This case brings to the forefront another question that continues to
plague us—namely, where is the line between public and private interests? It is
always easier to say from a distance that doctors should have the right to save one of the
children, even if it is against the parents’ wishes. Notwithstanding, this kind of
position does have precedence. The legal system not only condones but requires doctors to
report parents of suspected child abuse victims to social service agencies. The state
intervenes in the case of drug addicted mothers who put their fetuses or born children at
risk.
We all have a natural aversion to any sort of outside body trying to
tell us how to live. But while we need to protect the rights of individual families to
choose their own paths, society also has an obligation to make sure every individual out
there, child or not, has access to the basic protections and opportunities that a country
offers.
All of these types of decisions take place on a slippery slope. The
easy decisions—the ones that fit into a tidy little box—have already been made.
What we face in the future are questions that are more complex and with further reaching
implications.
To say, however, that a given decision puts us on a slippery slope
and therefore shouldn’t be made is a non-argument. We are already there on the slope
and there we’ll remain. Furthermore, each ethical dilemma is unique. We can not
possibly extrapolate to other cases when it comes to questions of ethics.
While the case of Jodie and Mary is an awful one, it could be even
worse. That Mary is certain to die in both scenarios, to an extent, makes the decision
easier. Saving Jodie’s life is weighed against Mary’s certain death. What if
without the surgery Mary’s death were not certain? What if there were a 10 percent
chance she would survive? Or 20 percent? At what point does the possibility of her
survival tip the balance the other way?
There are an infinite number of ways our ethical and moral natures
can and will be challenged in the future. To see Mary and Jodie as freaks of nature and
irrelevant to the average citizen’s moral universe is to underestimate the complexity
of the world we are entering into.
