The arguments surrounding Terri Schiavo will live on in statehouse
debate and new laws if an emerging coalition of disability rights
activists and right-to-lifers succeed in turning the national agony
over her case into a re-examination of when and how our lives come to
So far, only a few legislators in a handful of states have sought
significant changes to their laws, which define the fundamental
elements at stake - how a person can set limits on their medical
care, who gets to decide what their wishes are, what evidence is
needed to prove it.
None have yet become law and the chances for most, if not all, are
slim this year, with some legislatures finished and many far along in
their work for this session. But both Republicans and Democrats say
the arguments aren't going away.
The debate is an effort to strike a new balance between one stance
that argues that medical care and morality mean life must be pursued
in nearly all cases, and another stance, crafted over decades of
changing views about death, that some may choose to end drastically
damaged lives that depend on artificial means.
``I really wanted to make sure we gave a default for life and not for
death,'' said Kansas state Rep. Mary Pilcher-Cook, a Republican who
helped revive a measure that would give courts a greater chance to
review decisions to end life-sustaining care, lessening the role of
guardians or doctors. ``Our most vulnerable citizens are in fact in
the most danger of losing their life without any recourse.''
She was joined in her effort by disability activists, many aligned
with liberal causes, and Democrats in the state House. The measure
stalled in the Kansas Senate, however, as the session ended for the
year last Friday.
``We don't want to get into the politics of the right or the left or
whomever,'' said Michael Donnelly at the Disability Rights Center of
Kansas. ``This isn't about politics, this is about how we value or
don't value the lives people with disabilities have.''
His group had been working for years to revisit the issue, and came
together with several conservative legislators to move the bill
forward. Elsewhere, the National Right to Life Committee has produced
model legislation and is working with legislators in several states.
Legislation has also been introduced in Alabama, Hawaii, Louisiana,
Minnesota and South Dakota. The Louisiana bill is called the ``Human
Dignity Act''; Alabama's is the ``Starvation and Dehydration
Many measures predate recent weeks of attention to Schiavo, though
some drew their inspiration directly from the agonized public debate
over the 41-year-old woman's death - like one in Missouri introduced
last Thursday, the day Schiavo died.
``I was gripped by what I was watching and couldn't believe the state
of Florida would let this woman die in this manner,'' said GOP state
Rep. Cynthia Davis. Her bill would bar anyone from directing that
artificially supplied food and water be withheld or withdrawn without
a specific written directive from the patient.
There's also a slew of legislation around living wills and other end-
of-life issues that wouldn't further the aims of this emerging group -
like a Nevada measure that would let a guardian end life-sustaining
measures even if it's against a patient's known wishes, as long as
it's in their best interests.
The views of medical care and ending life have shifted over the past
30 years as the country grappled with brain-damaged or coma-bound
patients whose families said they shouldn't be forced to live a life
they wouldn't want, starting with Karen Ann Quinlan in 1975, then to
Nancy Cruzan in 1990 and now to Schiavo.
Critics say the medical community and society have gone too far.
``When original advance directives were created, nobody contemplated
that hospitals would refuse to treat ... It was usually just the
opposite, doctors refusing to pull the feeding tube,'' said Burke
Balch, director of the National Right to Life Committee's medical
Now, he says, the presumption in the hospitals, the courts and in too
much state legislation, is to go ahead and pull life-sustaining
treatment when there is not enough evidence that the patient wanted
Doctors and bioethicists say that overwhelmingly, safeguards exist in
hospitals and in courts to ensure that patients' and families' wishes
and best interests are protected.
``Are they going to go out and undo all the hard work that people
have done to make sure they can die without having to go to court?''
said Dr. Jean Teno, associate director at Brown University's
Gerontology and Health Care Research Center.
Most decisions, unlike the portrayal of critics, are made by doctors
and families working together, she said. ``My sense is that this
approach is working.''
Political agendas are hard to discount, as congressional leaders
raise dire warnings against judges in Florida and Washington over
their Schiavo decisions. That meshes with GOP efforts to put more
conservatives in the judiciary.
But political stereotypes fell, too, with traditionally liberal
leaders like Iowa Sen. Tom Harkin, the Rev. Jesse Jackson and Ralph
Nader supporting Terri Schiavo's parents efforts to keep their
Advocates vow that the questions of civil rights and morality are
going to win out.
``If there's any doubt, than life trumps death,'' said Donnelly, in
Kansas. ``I'm a quadriplegic, been that way for 28 years. I would
hate for somebody else to decide my life is not worth living.''
Monday April 4, 2005 1:16 AM By ROBERT TANNER AP National Writer