George J. Annas, J.D., M.P.H. For the first time in the history
of the United States, Congress met in a special emergency session
on Sunday, March 20, to pass legislation aimed at the medical
care of one patient — Terri Schiavo. President George W.
Bush encouraged the legislation and flew back to Washington, D.C.,
from his vacation in Crawford, Texas, so that he could be on hand
to sign it immediately. In a statement issued three days earlier,
he said: "The case of Terri Schiavo raises complex issues.
. . . Those who live at the mercy of others deserve our special
care and concern. It should be our goal as a nation to build a
culture of life, where all Americans are valued, welcomed, and
protected — and that culture of life must extend to individuals
with disabilities."1
The "culture of life" is a not-terribly-subtle reference
to the antiabortion movement in the United States, which received
significant encouragement in last year's presidential election.
The movement may now view itself as strong enough to generate
new laws to prevent human embryos from being created for research
and to require that incompetent patients be kept alive with artificially
delivered fluids and nutrition.
How did the U.S. Congress conclude that it was appropriate to
attempt to reopen a case that had finally been concluded after
more than seven years of litigation involving almost 20 judges?
Has the country's culture changed so dramatically as to require
a fundamental change in the law? Or do patients who cannot continue
to live without artificially delivered fluids and nutrition pose
previously unrecognized or novel questions of law and ethics?
The case of Terri Schiavo, a Florida woman who was in a persistent
vegetative state and who died on March 31, was being played out
as a public spectacle and a tragedy for her and her husband, Michael
Schiavo. Mr. Schiavo's private feud with his wife's parents over
the continued use of a feeding tube was taken to the media, the
courts, the Florida legislature, Florida Governor Jeb Bush, the
U.S. Congress, and President Bush. Since Ms. Schiavo was in a
medical and legal situation almost identical to those of two of
the most well-known patients in medical jurisprudence, Karen Ann
Quinlan and Nancy Cruzan, there must be something about cases
like theirs that defies simple solutions, whether medical or legal.
In this sense, the case of Terri Schiavo provides an opportunity
to examine issues that most lawyers, bioethicists, and physicians
believed were well settled — if not since the 1976 New Jersey
Supreme Court decision in the case of Karen Quinlan, then at least
since the 1990 U.S. Supreme Court decision in the case of Nancy
Cruzan. Before reviewing Terri Schiavo's case, it is well worth
reviewing the legal background information that was ignored by
Congress and the president.
The Case of Karen Quinlan
In 1976, the case of Karen Quinlan made international headlines
when her parents sought the assistance of a judge to discontinue
the use of a ventilator in their daughter, who was in a persistent
vegetative state.2 Ms. Quinlan's physicians had refused her parents'
request to remove the ventilator because, they said, they feared
that they might be held civilly or even criminally liable for
her death. The New Jersey Supreme Court ruled that competent persons
have a right to refuse life-sustaining treatment and that this
right should not be lost when a person becomes incompetent. Since
the court believed that the physicians were unwilling to withdraw
the ventilator because of the fear of legal liability, not precepts
of medical ethics, it devised a mechanism to grant the physicians
prospective legal immunity for taking this action. Specifically,
the New Jersey Supreme Court ruled that after a prognosis, confirmed
by a hospital ethics committee, that there is "no reasonable
possibility of a patient returning to a cognitive, sapient state,"
life-sustaining treatment can be removed and no one involved,
including the physicians, can be held civilly or criminally responsible
for the death.
The publicity surrounding the Quinlan case motivated two independent
developments: it encouraged states to enact "living will"
legislation that provided legal immunity to physicians who honored
patients' written "advance directives" specifying how
they would want to be treated if they ever became incompetent;
and it encouraged hospitals to establish ethics committees that
could attempt to resolve similar treatment disputes without going
to court.
The Case of Nancy Cruzan
Although Quinlan was widely followed, the New Jersey Supreme Court
could make law only for New Jersey. When the U.S. Supreme Court
decided the case of Nancy Cruzan in 1990, it made constitutional
law for the entire country. Nancy Cruzan was a young woman in
a persistent vegetative state caused by an accident; she was in
physical circumstances essentially identical to those of Karen
Quinlan, except that she was not dependent on a ventilator but
rather, like Terri Schiavo, required only tube feeding to continue
to live.3 The Missouri Supreme Court had ruled that the tube feeding
could be discontinued on the basis of Nancy's right of self-determination,
but that only Nancy herself should be able to make this decision.
Since she could not do so, tube feeding could be stopped only
if those speaking for her, including her parents, could produce
"clear and convincing" evidence that she would refuse
tube feeding if she could speak for herself.
The U.S. Supreme Court, in a five-to-four decision, agreed,
saying that the state of Missouri had the authority to adopt this
high standard of evidence (although no state was required to do
so) because of the finality of a decision to terminate treatment.
In the words of the chief justice, Missouri was entitled to "err
on the side of life." Six of the nine justices explicitly
found that no legal distinction could be made between artificially
delivered fluids and nutrition and other medical interventions,
such as ventilator support; none of the other three justices found
a constitutionally relevant distinction. This issue is not controversial
as a matter of constitutional law: Americans have (and have always
had) the legal right to refuse any medical intervention, including
artificially delivered fluids and nutrition.
Supreme Court Justice Sandra Day O'Connor, in a concurring opinion
(her vote decided the case), recognized that young people (such
as Karen Quinlan, Nancy Cruzan, and now Terri Schiavo —
all of whom were in their 20s at the time of their catastrophic
injuries) do not generally put explicit treatment instructions
in writing. She suggested that had Cruzan simply said something
like "if I'm not able to make medical treatment decisions
myself, I want my mother to make them," such a statement
should be a constitutionally protected delegation of the authority
to decide about her treatment. O'Connor's opinion was the reason
that the Cruzan case energized a movement — encouraging
people to use the appropriate documents, such as health care proxy
forms or assignments of durable power of attorney, to designate
someone (usually called a health care proxy, or simply an agent)
to make decisions for them if they are unable to make them themselves.
All states authorize this delegation, and most states explicitly
grant decision-making authority to a close relative — almost
always to the spouse first — if the patient has not made
a designation. Such laws are all to the good.
The Schiavo Case in the Courts
Terri Schiavo had a cardiac arrest, perhaps because of a potassium
imbalance, in 1990 (the year Cruzan was decided), when she was
27 years old. Until her death in 2005, she had lived in a persistent
vegetative state in nursing homes, with constant care, being nourished
and hydrated through tubes. In 1998, Michael Schiavo petitioned
the court to decide whether to discontinue the tube feeding. Unlike
Quinlan and Cruzan, however, the Schiavo case involved a family
dispute: Ms. Schiavo's parents objected. A judge found that there
was clear and convincing evidence that Terri Schiavo was in a
permanent or persistent vegetative state and that, if she could
make her own decision, she would choose to discontinue life-prolonging
procedures. An appeals court affirmed the first judge's decision,
and the Florida Supreme Court declined to review it.
Schiavo's parents returned to court, claiming that they had
newly discovered evidence. After an additional appeal, the parents
were permitted to challenge the original court findings on the
basis of new evidence related to a new treatment that they believed
might restore cognitive function. Five physicians were asked to
examine Ms. Schiavo — two chosen by the husband, two by
the parents, and one by the court. On the basis of their examinations
and conclusions, the trial judge was persuaded by the three experts
who agreed that Schiavo was in a persistent vegetative state.
The appeals court affirmed the original decision of the trial
court judge
Despite the irrefutable evidence that [Schiavo's] cerebral cortex
has sustained irreparable injuries, we understand why a parent
who had raised and nurtured a child from conception would hold
out hope that some level of cognitive function remained. If Mrs.
Schiavo were our own daughter, we could not hold to such faith.
But in the end this case is not about the aspirations that loving
parents have for their children. It is about Theresa Schiavo's
right to make her own decision, independent of her parents and
independent of her husband. . . . It may be unfortunate that when
families cannot agree, the best forum we can offer for this private,
personal decision is a public courtroom and the best decision-maker
we can provide is a judge with no prior knowledge of the ward,
but the law currently provides no better solution that adequately
protects the interests of promoting the value of life.
The Supreme Court of Florida again refused to hear an appeal.
Subsequently, the parents, with the vocal and organized support
of conservative religious organizations, went to the state legislature
seeking legislation requiring the reinsertion of Ms. Schiavo's
feeding tube, which had been removed on the basis of the court
decisions. The legislature passed a new law (2003-418), often
referred to as "Terri's Law," which gave Governor Jeb
Bush the authority to order the feeding tube reinserted, and he
did so. The law applied only to a patient who met the following
criteria on October 15, 2003 — in other words, only to Terri
Schiavo:
(a) That patient has no written advance directive;
(b) The court has found that patient to be in a persistent vegetative
state;
(c) That patient has had nutrition and hydration withheld; and
(d) A member of that patient's family has challenged the withholding
of nutrition and hydration.
The constitutionality of this law was immediately challenged.
In the fall of 2004, the Florida Supreme Court ruled that the
law was unconstitutional because it violates the separation of
powers — the division of the government into three branches
(executive, legislative, and judicial), each with its own powers
and responsibilities.8 The doctrine states simply that no branch
may encroach on the powers of another, and no branch may delegate
to another branch its constitutionally assigned power. Specifically,
the court held that for the legislature to pass a law that permits
the executive to "interfere with the final judicial determination
in a case" is "without question an invasion of the authority
of the judicial branch." In addition, the court found the
law unconstitutional for an independent reason, because it "delegates
legislative power to the governor" by giving the governor
"unbridled discretion" to make a decision about a citizen's
constitutional rights. In the court's words:
If the Legislature with the assent of the Governor can do what
was attempted here, the judicial branch would be subordinated
to the final directive of the other branches. Also subordinated
would be the rights of individuals, including the well established
privacy right to self determination. . . . Vested rights could
be stripped away based on popular clamor.
In January 2005, the U.S. Supreme Court refused to hear an appeal
brought by Governor Bush. Thereafter, the trial court judge ordered
that the feeding tube be removed in 30 days (at 1 p.m., Friday,
March 18) unless a higher court again intervened. The presiding
judge, George W. Greer of the Pinellas County Circuit Court, was
thereafter picketed and threatened with death; he has had to be
accompanied by armed guards at all times.
Ms. Schiavo's parents, again with the aid of a variety of religious
fundamentalist and "right to life" organizations, sought
review in the appeals courts, a new statute in the state legislature,
and finally, congressional intervention. Both the trial judge
and the appeals courts refused to reopen the case on the basis
of claims of new evidence (including the 2004 statement from Pope
John Paul II regarding fluids and nutrition) or the failure to
appoint an independent lawyer for her at the original hearing.
In Florida, the state legislature considered, and the House passed,
new legislation aimed at restoring the feeding tube, but the Florida
Senate — recognizing, I think, that this new legislation
would be unconstitutional for the same reason as the previous
legislation was — ultimately refused to approve the bill.
Thereupon, an event unique in American politics occurred: after
more than a week of discussion, and after formally declaring their
Easter recess without action, Congress reconvened two days after
the feeding tube was removed to consider emergency legislation
designed to apply only to Terri Schiavo.
Congress at the Bedside
Under rules that permitted a few senators to act if no senator
objected, the U.S. Senate adopted a bill entitled "For the
relief of the parents of Theresa Marie Schiavo" on March
20, 2005. The House, a majority of whose members had to be present
to vote, debated the same measure from 9 p.m. to midnight on the
same day and passed it by a four-to-one margin shortly after midnight
on March 21. The President then signed it into law. In substance,
the new law provides that "the U.S. District Court for the
Middle District of Florida shall have jurisdiction" to hear
a suit "for the alleged violation of any right of Theresa
Marie Schiavo under the Constitution or laws of the United States
relating to the withholding or withdrawal of food, fluids, or
medical treatment necessary to sustain her life." The parents
"have standing" to bring the lawsuit (the federal court
had previously refused to hear the case on the basis that the
parents had no standing to bring it), and the court is instructed
to "determine de novo any claim of a violation of any right
of Theresa Marie Schiavo . . . notwithstanding any prior State
court determination . . ." — that is, to pretend that
no court has made any prior ruling in the case. The act is to
provide no "precedent with respect to future legislation."
The brief debate on this bill in the House of Representatives
(there were no hearings in either chamber and no debate at all
in the U.S. Senate) was notable primarily for its uninformed and
frenzied rhetoric. It was covered live on television by C-SPAN.
The primary sponsor of the measure, Congressman Thomas DeLay (R-Tex.),
for example, asserted that "She's not a vegetable, just handicapped
like many millions of people walking around today. This has nothing
to do with politics, and it's disgusting for people to say that
it does." Others echoed the sentiments of Senate majority
leader and physician Bill Frist (R-Tenn.), who said that immediate
action was imperative because "Terri Schiavo is being denied
lifesaving fluids and nutrition as we speak."
Other physician-members of the House chimed in. Congressman
Dave Weldon (R-Fla.) remarked that, on the basis of his 16 years
of medical practice, he was able to conclude that Terri Schiavo
is "not in a persistent vegetative state." Congressman
Phil Gingrey (R-Ga.) agreed, saying "she's very much alive."
Another physician, Congressman Joe Schwarz (R-Mich.), who was
a head and neck surgeon for 27 years, opined that "she does
have some cognitive ability" and asked, "How many other
patients are there with feeding tubes? Should they be removed
too?" Another physician-congressman, Tom Price (R-Ga.), thought
the law was reasonable because there was "no living will
in place" and the family and experts disagreed. The only
physician who was troubled by Congress's public diagnosis and
treatment of Terri Schiavo was James McDermott (D-Wash.), who
chided his physician-colleagues for the poor medical practice
of making a diagnosis without examining the patient.
Although he deferred to the medical expertise of his congressional
colleagues with M.D. degrees, Congressman Barney Frank (D-Mass.)
pointed out that the chamber was not filled with physicians. Frank
said of the March 20 proceedings: "We're not doctors, we
just play them on C-SPAN." The mantras of the debate were
that in a life-or-death decision, we should err on the "side
of life," that action should be taken to "prevent death
by starvation" and ensure the "right to life,"
and that Congress should "protect the rights of disabled
people."
The following day, U.S. District Court Judge James D. Whittemore
issued a careful opinion denying the request of the parents for
a temporary restraining order that would require the reinsertion
of the feeding tube. The judge concluded that the parents had
failed to demonstrate "a substantial likelihood of success
on the merits" of the case — a prerequisite for a temporary
restraining order. Specifically, Judge Whittemore found that,
as to the various due-process claims made, the case had been "exhaustively
litigated"; that, throughout, all parties had been "represented
by able counsel"; and that it was not clear how having an
additional lawyer "appointed by the court [for Ms. Schiavo]
would have reduced the risk of erroneous rulings." As to
the allegation that the patient's First Amendment rights to practice
her religion had been violated by the state, the court held that
there were no state actions involved at all, "because neither
Defendant Schiavo nor Defendant Hospice are state actors."
Whittemore's decision was reasonable and consistent with settled
law, and was, not suprisingly, upheld on appeal. The case of Terri
Schiavo resulted in no changes in the law, nor were any good arguments
made that legal changes were necessary. The religious right and
congressional Republicans may nonetheless attempt to use this
decision to their advantage. Despite the fact that Congress itself
sent the case to federal court for determination, some Republicans
have already begun to cite the ruling as yet another example of
"legislating" by the courts. For they liken the action
permitted — the withdrawal of a feeding tube — to
unfavored activities, such as abortion and same-sex marriage,
that courts have allowed to occur. All three activities, they
argue, represent attacks on the "culture of life" and
necessitate that the President appoint federal court judges who
value life over liberty.
Proxy Decision Makers, Persistent Vegetative States, and Death.
A vast majority of Americans would not want to be maintained in
a persistent vegetative state by means of a feeding tube, like
Terri Schiavo and Nancy Cruzan. The intense publicity generated
by this case will cause many to discuss this issue with their
families and, I hope, to sign an advance directive. Such a directive,
in the form of a living will or the designation of a health care
proxy, would prevent court involvement in virtually all cases
— although it might not have solved the problem in the Schiavo
case, because the family members disagreed about Terri Schiavo's
medical condition and the acceptability of removing the tube in
any circumstances.
Despite the impression that may have been created by these three
cases, and especially by the grandstanding in Congress, conflicts
involving medical decision making for incompetent patients near
the end of life are no longer primarily legal in nature, if they
ever were. The law has been remarkably stable since Quinlan (which
itself restated existing law): competent adults have the right
to refuse any medical treatment, including life-sustaining treatment
(which includes artificially delivered fluids and nutrition).
Incompetent adults retain an interest in self-determination. Competent
adults can execute an advance directive stating their wishes and
designate a person to act on their behalf, and physicians can
honor these wishes. Physicians and health care agents should make
treatment decisions consistent with what they believe the patient
would want (the subjective standard). If the patient's desires
cannot be ascertained, then treatment decisions should be based
on the patient's best interests (what a reasonable person would
most likely want in the same circumstances). This has, I believe,
always been the law in the United States.
Of course, legal forms or formalities cannot solve nonlegal
problems. Decision making near the end of life is difficult and
can exacerbate unresolved family feuds that then are played out
at the patient's bedside and even in the media. Nonetheless, it
is reasonable and responsible for all persons to designate health
care agents to make treatment decisions for them when they are
unable to make their own. After this recent congressional intervention,
it also makes sense to specifically state one's wishes with respect
to artificial fluids and hydration — and that one wants
no politicians, even physician-politicians, involved in the process.
Most Americans will agree with a resolution that was overwhelmingly
adopted by the California Medical Association on the same day
that Congress passed the Schiavo law: "Resolved: That the
California Medical Association expresses its outrage at Congress'
interference with these medical decisions."
If there is disagreement between the physician and the family,
or among family members, the involvement of outside experts, including
consultants, ethics committees, risk managers, lawyers, and even
courts, may become inevitable — at least if the patient
survives long enough to permit such involvement. It is the long-lasting
nature of the persistent vegetative state that results in its
persistence in the courtrooms of the United States. There is (and
should be) no special law regarding the refusal of treatment that
is tailored to specific diseases or prognoses, and the persistent
vegetative state is no exception. Nor do feeding tubes have rights:
people do. "Erring on the side of life" in this context
often results in violating a person's body and human dignity in
a way few would want for themselves. In such situations, erring
on the side of liberty — specifically, the patient's right
to decide on treatment — is more consistent with American
values and our constitutional traditions. As the Massachusetts
Supreme Judicial Court said in a 1977 case that raised the same
legal question: "The constitutional right to privacy, as
we conceive it, is an expression of the sanctity of individual
free choice and self-determination as fundamental constituents
of life. The value of life as so perceived is lessened not by
a decision to refuse treatment, but by the failure to allow a
competent human being the right of choice."
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