REVIEW
& OUTLOOK
'I Want to Live!'
What if you'd rather not exercise your
"right to die"?
Friday, March 25, 2005 12:01 a.m. EST
It seems like only yesterday that the case of Karen Ann Quinlan
inserted the words "right to die" into the vocabulary of every
American. As recently as this year, the notion that people have to fight for
this right resonated with many moviegoers as a compelling plot point in
"Million Dollar Baby." Yet in the three decades since Ms. Quinlan's
parents first battled the medical and legal systems for the right to have their
comatose daughter taken off life support, both the law and public opinion have shifted
dramatically.
When patients check into a hospital today, the 1990 Patient
Self-Determination Act mandates that they be given a document allowing them to
specify that they don't want to be kept alive under certain conditions. Indeed,
we've grown so accustomed to the normative idea that there are fates worse than
death that efforts by the parents of Terri Schiavo to keep their brain-damaged
daughter alive genuinely surprise many people.
But norms can turn on a dime, it seems. As political, legal and
medical debates swirl about Ms. Schiavo, a new thought is sinking into some
minds: What if something happens to me in a system no longer afraid to pull the
plug, in a society that now presumes I'd rather be dead?
"Where do you go to sign a living will saying you
want them to leave the tube in?" laments Slate columnist Mickey
Kaus on his Kausfiles blog. From Independent Women's Forum chairman Heather
Graham comes a similar plea: "This is terrifying. Far from living wills
being necessary to get us killed faster [as we keep being told], I am getting
one and officially telling everyone . . that whatever any guardian
might someday allege, I DO NOT want anyone to enable my death unless there is
zero hope, constant uncontrollable pain, and no one who cares enough to come
visit."
If only it were that simple. At Not Dead Yet, an organization of
disability activists, the question of how to make sure nobody hastens your
demise against your wishes has long been an urgent concern. Its Web site
asserts that "legalized medical killing is really about a deadly double
standard for people with severe disabilities, including both conditions that
are labeled terminal and those that are not."
The president of Not Dead Yet, Diane Coleman, says that her
organization has seen cases where, for instance, authorities overruled the
life-maintenance directive of a guardian appointed by the patient himself, or
compelled a conscious disabled person to die. That's as troubling to Ms.
Coleman, who now needs a respirator to help her breathe at night, as it is to
other members of the organization. Demonstrating in her wheelchair with a
"Feed Terri" sign in Florida this week, Eleanor Smith--a self-described
lesbian, liberal and agnostic--told Reuters: "At this point I would rather
have a right-wing Christian decide my fate than an ACLU member."
So here is where we have landed. By law, all the paralyzed
character on a ventilator in the assisted-suicide drama of "Million Dollar
Baby" really had to do was tell doctors to let her die. For those
inspired, instead, by the title of the 1958 movie "I Want To Live!"
the options are more clouded. Ms. Coleman suggests giving a durable power of
attorney to a trusted person and making sure that he or she knows exactly what
your wishes are. Then hope that the system obeys them.