Health Law and Ethics Essay

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n engl j med

352;16

www.nejm.org april

21, 2005

1630

P E R S P E C T I V E

verse populations and less inclusive health care pro-
grams, cautioned Joanne Lynn, a senior research-
er with the RAND Corporation and director of the
Washington Home Center for Palliative Care Stud-
ies in Washington, D.C. “There isn’t a huge demand
for assisted suicide in good care systems, but there
could be a huge demand in much less adequate care
systems,” Lynn said.

Psychiatrist Linda Ganzini of Oregon Health and
Sciences University agrees that her state’s high-
quality system of palliative care is the factor most
responsible for keeping the number of assisted-sui-

cide cases low. “Your safety net is your end-of-life
care and your hospice care,” she said. “It’s not the
safeguards that you build into the law.”

1.

Colburn D. Why am I not dead? The Oregonian. March 4,
2005:A01.

2.

Tolle SW, Tilden VR, Drach LL, Fromme EK, Perrin NA, Hedberg
K. Characteristics and proportion of dying Oregonians who person-
ally consider physician-assisted suicide. J Clin Ethics 2004;15:111-8.

3.

Ganzini L, Nelson HD, Lee MA, Kraemer DF, Schmidt TA,
Delorit MA. Oregon physicians’ attitudes about and experiences
with end-of-life care since passage of the Oregon Death with Dig-
nity Act. JAMA 2001;285:2363-9.

4.

House of Lords Select Committee on the Assisted Dying for
the Terminally Ill Bill. Volume I: Report. HL Paper 86-I.

The story of Terri Schiavo should be disturbing to
all of us. How can it be that medicine, ethics, law,
and family could work so poorly together in meet-
ing the needs of this woman who was left in a per-
sistent vegetative state after having a cardiac ar-
rest? Ms. Schiavo had been sustained by artificial
hydration and nutrition through a feeding tube
for 15 years, and her husband, Michael Schiavo, was
locked in a very public legal struggle with her par-
ents and siblings about whether such treatment
should be continued or stopped. Distortion by inter-
est groups, media hyperbole, and manipulative use
of videotape characterized this case and demon-
strate what can happen when a patient becomes
more a precedent-setting symbol than a unique hu-
man being.

Let us begin with some medical facts. On Feb-
ruary 25, 1990, Terri Schiavo had a cardiac arrest,
triggered by extreme hypokalemia brought on by an
eating disorder. As a result, severe hypoxic–ische-
mic encephalopathy developed, and during the sub-
sequent months, she exhibited no evidence of high-
er cortical function. Computed tomographic scans
of her brain eventually showed severe atrophy of

her cerebral hemispheres, and her electroenceph-
alograms were flat, indicating no functional activ-
ity of the cerebral cortex. Her neurologic examina-
tions were indicative of a persistent vegetative state,
which includes periods of wakefulness alternating
with sleep, some reflexive responses to light and
noise, and some basic gag and swallowing respons-
es, but no signs of emotion, willful activity, or cog-
nition.

1

There is no evidence that Ms. Schiavo was
suffering, since the usual definition of this term re-
quires conscious awareness that is impossible in
the absence of cortical activity. There have been only
a few reported cases in which minimal cognitive and
motor functions were restored three months or
more after the diagnosis of a persistent vegetative
state due to hypoxic–ischemic encephalopathy; in
none of these cases was there the sort of objective
evidence of severe cortical damage that was present
in this case, nor was the period of disability so long.

2

Having viewed some of the highly edited video-
taped material of Terri Schiavo and having seen
other patients in a persistent vegetative state, I am
not surprised that family members and others un-
familiar with this condition would interpret some
of her apparent alertness and movement as mean-
ingful. In 2002, the Florida trial court judge con-
ducted six days of evidentiary hearings on Ms.
Schiavo’s condition, including evaluations by four
neurologists, one radiologist, and her attending

Terri Schiavo — A Tragedy Compounded

Timothy E. Quill, M.D.

Related article, page 1710

Dr. Quill is a professor of medicine, psychiatry, and medi-
cal humanities and the director of the Center for Palliative
Care and Clinical Ethics at the University of Rochester
Medical Center, Rochester, N.Y.

Physician-Assisted Suicide — Oregon and Beyond

An interview with
Dr. Quill can be
heard at www.
nejm.org.

The New England Journal of Medicine
Downloaded from nejm.org at CUNY – College of Staten Island on March 19, 2020. For personal use only. No other uses without permission.

Copyright © 2005 Massachusetts Medical Society. All rights reserved.

n engl j med

352;16

www.nejm.org april

21, 2005

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P E R S P E C T I V E

physician. The two neurologists selected by Michael
Schiavo, a court-appointed “neutral” neurologist,
and Ms. Schiavo’s attending physician all agreed
that her condition met the criteria for a persistent
vegetative state. The neurologist and the radiolo-
gist chosen by the patient’s parents and siblings,
the Schindler family, disagreed and suggested that
Ms. Schiavo’s condition might improve with un-
proven therapies such as hyperbaric oxygen or vaso-
dilators — but had no objective data to support
their assertions. The trial court judge ruled that the
diagnosis of a persistent vegetative state met the le-
gal standard of “clear and convincing” evidence,
and this decision was reviewed and upheld by the
Florida Second District Court of Appeal. Subsequent
appeals to the Florida Supreme Court and the U.S.
Supreme Court were denied a hearing.

So what was known about Terri Schiavo’s wish-
es and values? Since she unfortunately left no writ-
ten advance directive, the next step would be to
meet with her closest family members and try to un-
derstand what she would have wanted under these
medical circumstances if she could have spoken
for herself, drawing on the principle of “substi-
tuted judgment.” Some families unite around this
question, especially when there is a shared vision
of the patient’s views and values. Other families un-
ravel, their crisis aggravated by genuine differences
of opinion about the proper course of action or pre-
existing fault lines arising from long-standing fam-
ily dynamics.

Here Ms. Schiavo’s story gets more complex.
Michael Schiavo was made her legal guardian under
Florida law, which designates the spouse as the de-
cision maker above other family members if a pa-
tient becomes irreversibly incapacitated and has not
designated a health care proxy. After three years of
trying traditional and experimental therapies, Mr.
Schiavo accepted the neurologists’ diagnosis of an
irreversible persistent vegetative state. He believed
that his wife would not want to be kept alive indefi-
nitely in her condition, recalling prior statements
that she had made, such as “I don’t want to be kept
alive on a machine.” The Schindler family, however,
did not accept the diagnosis of a persistent vegeta-
tive state, believing instead that Ms. Schiavo’s con-
dition could improve with additional rehabilitative
treatment.

The relationship between Mr. Schiavo and the
Schindler family began breaking down in 1993,
around the time that a malpractice lawsuit revolv-
ing around the events that led to Ms. Schiavo’s car-

diac arrest was settled. In 1994, Mr. Schiavo attempt-
ed to refuse treatment for an infection his wife had,
and her parents took legal action to require treat-
ment. Thus began wide-ranging, acrimonious legal
and public-opinion battles that eventually involved
multiple special-interest groups who saw this case
as a

cause célèbre

for their particular issue. Michael
Schiavo was criticized for being motivated by fi-
nancial greed, and his loyalty to his wife was ques-
tioned because he now lives with another woman,
with whom he has two children. The Schindlers
were criticized for not accepting the painful reali-
ty of their daughter’s condition and for expressing
their own wishes and values rather than hers.

The right of competent patients to refuse un-
wanted medical treatment, including artificial hy-
dration and nutrition, is a settled ethical and legal
issue in this country — based on the right to bodily
integrity. In the Nancy Cruzan case, the Supreme
Court affirmed that surrogate decision makers have
this right when a patient is incapacitated, but it said
that states could set their own standards of evi-
dence about patients’ own wishes.

3

Although both
the Schiavo and Cruzan cases involved the potential
withdrawal of a feeding tube from a patient in a per-
sistent vegetative state, the family was united in be-
lieving that Nancy Cruzan would not want to be kept
alive in such a state indefinitely. Their challenge, un-
der Missouri law, was to prove to the court in a clear
and convincing manner that this would have been
Nancy Cruzan’s own wish. The Schiavo case raises
much more challenging questions about how to de-
fine family and how to proceed if members of the
immediate family are not in agreement.

The relevant Florida statute requires “clear and
convincing evidence that the decision would have
been the one the patient would have chosen had the
patient been competent or, if there is no indication
of what the patient would have chosen, that the de-
cision is in the patient’s best interest.” Since there
is no societal consensus about whether a feeding
tube is in the “best interest” of a patient in a persis-
tent vegetative state, the main legal question to be
addressed was that of Terri Schiavo’s wishes. In
2001, the trial court judge ruled that clear and con-
vincing evidence showed that Ms. Schiavo would
have chosen not to receive life-prolonging treat-
ment under the circumstances that then applied.
This ruling was also affirmed by the Florida ap-
peals court and denied a hearing by the Florida Su-
preme Court. When Terri Schiavo’s feeding tube
was removed for the second time, in 2003, the

Terri Schiavo — A Tragedy Compounded
The New England Journal of Medicine
Downloaded from nejm.org at CUNY – College of Staten Island on March 19, 2020. For personal use only. No other uses without permission.
Copyright © 2005 Massachusetts Medical Society. All rights reserved.

n engl j med

352;16

www.nejm.org april

21, 2005

1633

P E R S P E C T I V E

Florida legislature created “Terri’s Law” to override
the court decision, and the tube was again reinsert-
ed. This law was subsequently ruled an unconsti-
tutional violation of the separation of powers.

On March 18, 2005, Ms. Schiavo’s feeding tube
was removed for a third time. The U.S. Congress
then passed an “emergency measure” that was
signed by the President in an effort both to force
federal courts to review Ms. Schiavo’s case and to
create a legal mandate to have her feeding tube re-
inserted yet again. The U.S. District Court in Flori-
da denied the emergency request to reinsert the
feeding tube, and this decision was upheld on ap-
peal. Multiple subsequent legal appeals were de-
nied, and Ms. Schiavo died on March 31, 2005, 13
days after the feeding tube was removed.

This sad saga reinforces my personal belief that
the courts — though their involvement is some-
times necessary — are the last place one wants to
be when working through these complex dilemmas.
Although I did not examine her, from the data I
reviewed, I have no doubt that Terri Schiavo was in
a persistent vegetative state and that her cognitive
and neurologic functions were unfortunately not
going to improve. Her life could have been further
prolonged with artificial hydration and nutrition,
and there is some solace in knowing that she was
not consciously suffering. I also believe that both
her husband and her family, while seeing the situ-
ation in radically different ways, were trying to do
what was right for her. Her family and the public
should be reassured and educated that dying in this
way can be a natural, humane process (humans died
in this way for thousands of years before the ad-
vent of feeding tubes).

4

In considering such profound decisions, the cen-

tral issue is not what family members would want
for themselves or what they want for their incapac-
itated loved one, but rather what the patient would
want for himself or herself. The New Jersey Supreme
Court that decided the case of Karen Ann Quinlan
got the question of substituted judgment right: If
the patient could wake up for 15 minutes and un-
derstand his or her condition fully, and then had to
return to it, what would he or she tell you to do? If
the data about the patient’s wishes are not clear,
then in the absence of public policy or family con-
sensus, we should err on the side of continued treat-
ment even in cases of a persistent vegetative state
in which there is no hope of recovery. But if the
evidence is clear, as the courts found in the case of
Terri Schiavo, then enforcing life-prolonging treat-
ment against what is agreed to be the patient’s will is
both unethical and illegal.

Let us hope that future courts and legislative
bodies put aside all the special interests and dis-
tractions and listen carefully to the patient’s voice
as expressed through family members and close
friends. This voice is what counts the most, and in
the Terri Schiavo case, it was largely drowned out
by a very loud, self-interested public debate.

This article has been modified from the version that was pub-
lished at www.nejm.org on March 22, 2005.

1.

Jennett B. The vegetative state: medical facts, ethical and legal
dilemmas. New York: Cambridge University Press, 2002.

2.

The Multi-Society Task Force on PVS. Medical aspects of the
persistent vegetative state. N Engl J Med 1994;330:1499-508,
1572-9. [Erratum, N Engl J Med 1995;333:130.]

3.

Gostin LO. Life and death choices after Cruzan. Law Med
Health Care 1991;19:9-12.

4.

Ganzini L, Goy ER, Miller LL, Harvath TA, Jackson A, Delorit MA.
Nurses’ experiences with hospice patients who refuse food and flu-
ids to hasten death. N Engl J Med 2003;349:359-65.

In January 2005, the government of India enacted a
new rule that allows foreign pharmaceutical com-
panies and other interested parties to conduct tri-

als of new drugs in India at the same time that trials
of the same phase are being conducted in other
countries. This new rule supersedes a directive of
India’s Drugs and Cosmetics Rules that required a
“phase lag” between India and the rest of the world.
According to the old rule, if a phase 3 study had
been completed elsewhere, only a phase 2 study was
permitted in India. Even under the new rule, phase 1

Terri Schiavo — A Tragedy Compounded

Dr. Nundy is a consultant in the Department of Surgical
Gastroenterology, Sir Ganga Ram Hospital, and Dr. Gul-
hati is the editor of the

Monthly Index of Medical Special-
ties

— both in New Delhi, India.

A New Colonialism? — Conducting Clinical Trials in India

Samiran Nundy, M.Chir., and Chandra M. Gulhati, M.D., D.T.M.&H.

The New England Journal of Medicine
Downloaded from nejm.org at CUNY – College of Staten Island on March 19, 2020. For personal use only. No other uses without permission.
Copyright © 2005 Massachusetts Medical Society. All rights reserved.

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