First,
do no harm.
The doctors
at Great Ormond Street Hospital would do well to remember this essential principle
of bioethics before they pull the life support of Charlie Gard.
Charlie
is an eleven-month-old patient at GOSH who suffers from a rare inherited
disease called infantile onset encephalomyopathic mitochondrial DNA depletion
syndrome, otherwise known as MDDS. This disease leads to progressive muscle
weakness, brain damage, and breathing difficulties. Charlie is unable to
breathe without a ventilator, and he is fed through a tube.
After
analyzing Charlie’s condition, GOSH advised that continued treatment would do
nothing to help him, and his life support should be removed. But Charlie’s
parents, Chris Gard and Connie Yates, wanted Charlie to undergo an experimental
therapy called nucleoside which would give Charlie a chance at survival. They
found a doctor in the United States who was willing to administer the
treatment. They started a crowdfunding page and raised all £1.3m necessary to
pay for all expenses.
All
the administrators at GOSH had to do was release Charlie Gard.
Instead,
the parents found themselves embroiled in a legal battle in the Family Division
of the High Court in London, where GOSH requested Mr. Justice Francis to rule
that Charlie’s life support treatment should end without his release. After
hearing the case, Mr. Justice Francis sided with GOSH administrators.
Two
days later, three Court of Appeal judges rejected the parents’ appeal.
The
battle moved to the Supreme Court, where judges once again ruled against
Charlie’s release. Charlie’s mother had to be led from the court by lawyers
after breaking down entirely.
After
they nearly pulled Charlie’s life support two weeks ago, the case was re-opened
after a professor of neurology from the US (who remains anonymous for legal
reasons) cited new information pointing to a 10% chance of success from the
therapy.
Every day now, the
battle rages on. Just this morning there was another hearing to determine
little Charlie’s fate.
Think about that
sentence for a moment. Consider its meaning. “There was another hearing to
determine little Charlie’s fate.”
In a civilized
society, courts and judges should not
determine the life or death of children.
It shouldn’t
matter what the “new evidence” is. It shouldn’t matter what the High and Mighty
Court of Life and Death rules. It shouldn’t matter whether Mr. Justice Francis
believes that Charlie has a 5% chance or a 10% chance or a 100% chance at a
normal life.
Charlie’s parents
found an experimental therapy, found a doctor who was willing to administer the
treatment, self-funded every component of the hospital transition, asked nothing
at all from the administrators at Great Ormond Street Hospital, except that they release the child.
Dear God, this
shouldn’t be a question. We shouldn’t have to argue about this.
First, do no
harm.
No, little
Charlie Gard is not normal. He will never be normal. His life will never, can
never, be easy. But when did ease
become the absolute standard for life? When did a healthy body and a
fully-functioning brain become the prerequisites for dignity and worth?
And even if you
reject all of this, there remains the fact that there is no real evidence that
Charlie is suffering. Charlie’s parents don’t believe that he is. No scientific
data says conclusively that he is.
To be clear,
there is a grey area here. It would
not be immoral for Charlie’s parents to decide that the experimental therapy is
unlikely to succeed, and allow the hospital to take Charlie off life support.
There is no moral obligation for a family to continue extraordinary care in an
instance where the patient is unlikely to survive—and no one pretends that
Charlie has more than the slightest chance at survival.
The hospital has
no obligation to continue providing life support. But no one is asking them to
continue providing life support. All that Chris and Connie want is for them to
release the child (which, incidentally, requires the hospital to take Charlie off
their life support, which is precisely what they wanted to do).
“The doctors know
best,” the masses cry.
But what is “best”?
What if the doctors decide that denying care to the mentally ill is best? What
happens when the doctors feel that terminating children with down syndrome is
best? Do we really want to live in a world where “best” is determined by an
elite few?
First, do no
harm.
Removing the life
support of a terminally ill and deteriorating individual is tragic, but it is
not inherently “harm.” But this case presents a new form of “harm” which the
medical community must reject—the harm that comes with denying basic rights to
a patient’s parents.
Will the therapy
succeed? It isn’t likely.
But Charlie’s
parents should not be kept from the treatment by the brute force of the state.
After all, Charlie’s
parents are not forcing anyone to do anything. They have demanded nothing of
GOSH. They have demanded nothing of the state. They have raised the money
themselves. All that they ask is for Charlie to be released back into their
care.
But day after
day, that request is denied them. Instead, a death panel is determining whether
or not Charlie Gard should live or die.
This case will
set a precedent, not just for the UK, but for the rest of the (supposedly) free
world. Who holds the power of life and death? Who gets to determine whether or
not you or your child has a chance at life?
In its initial
decision, the court stated that its goal was to allow Charlie to “die with
dignity.” But what is this culture of death that we have we created in which a
life with pain cannot be a life with dignity?
To Great Ormond
Street Hospital, to the courts of the United Kingom, to those testifying in
those courts, we beg you: Live with dignity. Let Charlie live too.
But first, do no
harm.
