Volume 3, October 2003
Life, Death, and Politics: The Long Good-bye
Barbara A. Noah, J.D.*
Associate & Lecturer, Health Law & Policy, University of Florida, Levin
College of Law; Adjunct Prof., University of Florida College of Medicine;
Member, Shands Hospital Ethics Advisory Committee.
It is well settled under Florida law that individuals
have a right to refuse life-sustaining medical treatment. As recognized in judicial decisions and by
statute, Florida’s law and its state constitution clearly support this right of
refusal, even in the absence of a written advance directive. The law is grounded in the ethical principle
of autonomy that allows patients to retain control over their bodies. This ethical and legal right of bodily
integrity does not disappear when patients become unable to express their
wishes. Instead, the law permits a proxy
decisionmaker to step in to articulate the desires of incapacitated patients.
Thirteen years ago, at the age of 26, Terri Schiavo
entered into a persistent vegetative state (PVS) after a heart attack deprived
her brain of oxygen for an extended period.
Since then, a tube providing artificial nutrition and hydration has
sustained her body. Because non-comatose
PVS patients experience waking and sleeping cycles, open their eyes, move their
limbs, and utter sounds, some people, including Terri’s parents, find it
difficult to accept that the patient lacks any capacity for thought or
conscious expression. Numerous medical experts
have confirmed that she will never recover any measurable brain function after
this passage of years. Notwithstanding
this expert opinion, her parents retain the hope that Terri will benefit from
unconventional efforts at rehabilitation.
For roughly the past decade, Terri’s husband, Michael
Schiavo, has been seeking permission from the Florida courts to have her
feeding tube removed so that she can die peacefully. Michael has based his request on Terri’s previously
expressed wishes, explaining that Terri would never have wanted to continue to
exist in a vegetative state. In a series
of judicial decisions, state and federal courts have repeatedly confirmed the
ethical and legal propriety of acceding to Michael’s request, concluding that
this evidence of Terri’s wishes is legally sufficient to support the removal of
the feeding tube.
Nevertheless, something has gone seriously amiss in this case. Terri’s parents have continuously and
vigorously protested Michael’s request to discontinue artificial feedings and
allow Terri to die, arguing that the evidence of Terri’s wishes is insufficient
and that its source is suspect.
Most recently, a Florida circuit broke the deadlock
between Michael Schiavo and Terri’s parents, ordering the tube removed, and on
October 15th the hospice providing Terri’s care complied with this order. Nearly a week later, the Florida legislature
took the extraordinary step of intervening in the case by enacting special
legislation that granted Governor Jeb Bush fifteen days in which to exercise
authority to “stay” the court’s decision.
Governor Bush immediately acted on that authority, ordering health care
providers to reinsert the tube so that Terri Schiavo’s could resume artificial
nutrition and hydration. The special
legislation calls for the appointment of a guardian ad litem to represent
Terri’s interests and to provide advice to the Governor about how to proceed,
but at this point it is inconceivable that the Governor would order the feeding
tube removed again. Thus, the ultimate
judgment about this issue rests with a non-judicial actor, and the
gubernatorial order is not, in fact, a “stay” at all, but amounts to a
permanent decision to overrule the court’s final order.
The special legislation represents an unwarranted and
irresponsible interference with an individual citizen’s right to make
autonomous medical decisions. At an
ethical level, the Governor’s intervention flies in the face of the now
well-settled right of individuals to refuse life-sustaining treatment. Rather than attempting to confirm Terri
Schiavo’s wishes in this situation, the state government has opted instead to
substitute its own judgment about what is right. Her husband’s attorney likens the state’s
actions to a kidnapping in the midst of the dying process–a monstrous meddling
with her right of bodily integrity.
The legislative action and the Governor’s blithe
decision to ignore the court order also raise significant constitutional
questions and will likely not survive appeal.
Numerous courts had confirmed Terri Schiavo’s right to refuse the
unwanted treatment, and the matter had been litigated to its conclusion,
culminating in a final order to cease the artificial life support. The legislature’s action applies
retroactively, changing the rules midstream after the parties had relied on a
previous set of rules to govern their conduct, in clear violation of the 14th
Amendment right to procedural due process.
This lack of notice creates an unfair surprise for the parties in the
case. In addition, because the
legislation targets a single individual, it offends the Equal Protection clause
of the Constitution, because there is no rational basis for distinguishing
Terri Schiavo’s case from all other individuals who are–or may in the future
Moreover, the legislation violates the constitutional
requirement of separation of powers–a legislature may not grant an executive
officer, such as the Governor, powers that are properly viewed as
judicial. The bill does precisely that,
by handing the Governor the authority to interfere with a final judicial
decision. The United States Supreme
Court has ruled, under separation of powers doctrine, that Congress may not
intrude upon judicial proceedings, no matter what the reason. It is quite clear that similar separation of
powers prohibitions apply in Florida, and elected officials take an oath to
abide by the state constitution.
Nevertheless, in the face of such constitutional objections, the Governor
has stated unabashedly that, although the legislature’s actions may have been
unconstitutional, “it was the right thing to do.”
One might also question the legislature’s true
motivations, in light of numerous pronouncements made during the pre-enactment
debate about the sanctity of life and the will of Floridians. More than a few commentators have observed
that the decision to intervene in the Schiavo case appeases vocal and
politically powerful religious groups who will wield tremendous clout in the coming
election year. The Governor has earned
high praise from Terri’s parents and various pro-life groups for his actions,
but others view his decision as one of political expedience cloaked in a mantle
of concern for Terri’s welfare.
Imagine instead a mirror image situation: Terri
Schiavo’s parents had prevailed in the courts, forcing the continuation of
artificial life support, notwithstanding her husband’s claim that she had
previously expressed wishes to refuse care under these circumstances. Not satisfied with this outcome, Terri Schiavo’s
husband somehow persuades the legislature to intervene and to grant the
Governor the authority to reverse the court’s conclusion and order the removal
of life support. The constitutional
objections to such a series of events remain the same. Even so, the very same groups that are
vocally applauding the legislative intervention in the Schiavo case would be
crying foul in the mirror image situation.
In any event, such a scenario is probably pure fantasy, even if the
Democratic Party controlled Tallahassee (though many would have said the same
of these recent events).
If allowed to stand, this model of legislative
intervention in individual medical decisions will have grave consequences for
patients and health care providers in Florida.
Although this particular bill was carefully tailored to address Terri
Schiavo’s circumstances, there is, for now, nothing to prevent the Florida
legislature from opting to use a similar mechanism to intervene in other sorts
of cases, such as disputes about abortion rights, organ and tissue donation, or
disputes among family members over appropriate medical treatment for a gravely
ill child. Patients, their families, and
their health care providers have had the rug pulled out from under them–these
recent events have placed the old assumptions about autonomous medical
decisionmaking seriously in doubt.
None of these arguments is meant to suggest that the
legislature lacks authority to act to rectify the more general problem of how
to settle disputes about end-of-life medical decisions. The legislature could, for instance, codify
its preference for erring on the side of continued treatment when family
members disagree about an incapacitated patient’s wishes by enacting a
non-retroactive statute that applies to all Floridians requiring a written
advance directive in these cases. Such a
requirement might be challenged as creating too substantial an obstacle to the
exercise of a patient’s right of self-determination, but that debate undoubtedly
would occur with more deliberation and openness than the recent series of
events has permitted.
In this case, it is unfortunate, though unsurprising,
that Terri never formalized her preferences in a written advance
directive. Few people in their
mid-twenties prepare for the possibility of sudden physical and mental
incapacity. Even had she done so,
however, her parents might very well refuse to believe that she could have
signed such a document and allege in court that it was forged (or verbally withdrawn)
even without any extrinsic evidence to support the charge. When the courts reject this contention, the
parents could march to the Governor, the legislature, and the media,
reiterating their allegations. If
successful in pursuing this extra‑legal appeal, it would amount to a de
facto amendment of state law, creating a situation where any patient’s relative
would have the power to veto a living will that directs the withdrawal of life‑sustaining
The Governor has requested that the court appoint an
independent guardian ad litem to represent Terri Schiavo’s interests. Although the clerk of the 6th Judicial
Circuit Court contacted me recently to ask whether I would be willing to be
considered for this role, I declined on the grounds that I already have formed
opinions about the case which would compromise my independence. Until a court rules on the constitutionality
of the Florida legislature’s actions, which even then might not settle matters
if the other branches wish again to defy the judiciary, Terri will continue to
lie in a vegetative state in a hospice bed in Pinellas County, Florida, her
feeding tube once again providing the nourishment needed to keep her body
alive. Fortunately–and this is the only
fortunate aspect of this recent series of events–she is unaware of the storm of
controversy surrounding her dying.
 See, e.g., In
re Guardianship of Browning, 568 So. 2d 4 (Fla. 1990) (ordering the removal
of a feeding tube from an incompetent patient based on her preferences as
expressed in a living will, and holding that an incompetent person’s guardian
or surrogate or proxy decisionmaker may exercise her
privacy-based right of refusal on her behalf, whether the patient’s wishes have
been expressed orally or in writing).
The Florida constitution, unlike the U.S. Constitution, also contains an
explicit provision guaranteeing citizens a right of privacy. See Constitution of the State of Florida,
Sect. 23 (“Every natural person has the right to be let alone and free from
governmental intrusion into the person’s private life except as otherwise
 See In re
Guardianship of Theresa Marie Schiavo, 851 So. 2d 182 (Fla. 2003).
 See Hugo Kugiya, “After
Fight, Tube’s Back; Comatose Woman Rehydrating,” Newsday, Oct. 23, 2003, at A6 (reporting
that Michael Schiavo’s attorney, George Felos,
“characterized the governor’s order as a sanctioned kidnaping”).
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