Volume 3, October 2003
www.psljournal.com/archives/newsedit/noah.cfm

 

Life, Death, and Politics: The Long Good-bye

 

Barbara A. Noah, J.D.^*

 

* Research 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.[1]  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.[2] 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.[3]

 

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 be–similarly situated.

 

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 treatment. 

 

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.