THE ULTIMATE RIGHT
IS DOING WHAT'S RIGHT
Journal of Healing – Nov. 5, 2003
By Mary Koch
As someone who every day mixes a variety of concoctions and pushes them through my
husband’s feeding tube, I’ve been more than just a little interested in the
so-called "Florida Feeding Tube" case.
The struggle over Terri Schiavo ran its course through the courts, finally landing in
the political arena with the accompanying media frenzy. Gov. Jeb Bush and the Florida
Legislature overruled the courts – at least for now – and a feeding tube was
reinserted in the 39-year-old woman who has been diagnosed as vegetative for 13 years.
Mrs. Schiavo will be kept alive while her family continues to squabble in the courts, her
husband pitted against her parents in a life-and-death argument.
My husband’s circumstances and Terri Schiavo’s differ significantly. She is
diagnosed as in a "persistent vegetative state" and cannot speak for herself.
John is diagnosed as "locked in." Even though he is paralyzed and unable to
speak, he can make and, with eye blinks, communicate his own decisions.
He has had to decide several times over the past 10 years: life with technological
assistance or almost-certain death without? He had prepared no advance directives before
his stroke. If he had, I’m pretty sure he would have specified no extraordinary
life-saving measures. Yet, when the stroke hit, when the doctor told me John would be
asked whether he wanted the life-saving technology, I knew to the core of my soul that the
answer would be yes.
* * *
A FEW YEARS later John had become very ill, too sick even to give his eye-blink
yes or no answer. The emergency room crew wanted to know whether to intubate, which meant
keeping keep him alive with mechanical respiration. It was up to me this time, an awful,
awe-filled decision. Intubation is a crushing invasion of the body and, in many
people’s eyes, worse than death. I said yes and made myself watch the procedure.
A few days later, it was time to determine if John could breathe on his own. He had
recovered sufficiently to "speak" for himself. If he could not breathe, he was
asked, would he want to go back on the ventilator permanently. No, he said.
The ventilator was scheduled to be turned off later in the day. As we waited, an inner
voice told me to check with John again. Indeed, he had changed his mind. He would take
life, even on the ventilator – which, as it happened, was removed successfully.
* * *
MUCH AS WE might try to prepare for life and death decisions, they are of and in
the moment. Much as we might file living wills and advance directives neatly into a desk
drawer, the moment of decision isn’t always so tidy.
I sat once with a friend who was dying but who could prolong her life indefinitely with
a ventilator. She had much to live for – grandchildren she wanted to watch grow. But
no, she said quietly, with calm courage. It was a sacred moment in her life and mine.
That’s why, I believe, end-of-life issues do not belong in civil courts, which are
so often uncivil. Nor do they belong in the circus atmosphere of politics with its narrow
debates over rights: right to life, right to choose, right to assisted suicide, and –
dearest of all to many – the right to be left alone.
A medical study in 1994 found that up to 35,000 Americans are in a persistent
vegetative state at any given time. That means some 35,000 families – unlike Terri
Schiavo’s – are quietly going through a painful, heart-searing process,
searching for that most important right of all: the right decision.
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