SHATTERING THE NEUTRAL SURROGATE MYTH IN END-OF-LIFE DECISIONMAKING: TERRI SCHIAVO AND HER FAMILY
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File: 04.Shepherd Article Created on: 7/1/2005 10:15 AM Last Printed: 9/30/2005 5:06 AM
SHATTERING THE NEUTRAL SURROGATE MYTH IN
END-OF-LIFE DECISIONMAKING: TERRI SCHIAVO AND
HER FAMILY
LOIS SHEPHERD∗
As the law of end-of-life decisionmaking has evolved from
1 2 3
Quinlan in 1976 to Cruzan in 1990 and now to Schiavo, the pa-
tient’s right to self-determination has triumphed over other values
that might guide our ethical and legal thinking in this area. Today,
the clear legal consensus is that a competent individual has, by vir-
tue of his moral right to self-determination, a common law and
constitutional right to refuse life-sustaining medical treatment.4
The right to refuse life-sustaining treatment applies as well to those
who were once competent individuals but have lost their capacity to
make treatment decisions.5
Yet the question of how to effectuate this latter right of the in-
competent person continues to vex us. Since the incompetent per-
son can no longer form and communicate an opinion about medi-
cal treatment, we have to look elsewhere for direction about how to
respect her right to self-determination. We place a certain amount
of faith in and devote substantial resources to promoting the living
will—a written legal declaration by a competent individual that
specifies what she would wish regarding medical treatment were
she to become incompetent. But people seldom use living wills,
∗
D’Alemberte Professor of Law, Florida State University College of Law. My
thanks to the Cumberland Law School, Samford University, for hosting the bio-
ethics symposium at which I presented this paper, to David Smolin for organizing
the symposium, to the FSU College of Law for continuing research support, and to
Amie Rice for her valuable research assistance.
1
In re Quinlan, 355 A.2d 647 (N.J. 1976) (permitting the disconnection of the
mechanical ventilator supporting the life of Karen Quinlan, a woman in a persis-
tent vegetative state, at the request of her father).
2
Cruzan v. Dir., Mo. Dep’t of Health, 497 U.S. 261 (1990) (upholding Missouri’s
law requiring clear and convincing evidence of wishes of woman in persistent
vegetative state before allowing withdrawal of nutrition and hydration).
3
A detailed chronology of the Schiavo controversy from the time of Terri’s col-
lapse in 1990 to December 2003 is included in the report of Jay Wolfson, the
guardian ad litem to Terri Schiavo appointed in October 2003. That report is
available at http://www.myflorida.com/myflorida/governorsoffice/review_year/
docs/wolfson.pdf or http://abstract appeal.com/schiavo/WolfsonReport.pdf.
[hereinafter “Guardian Ad Litem Report”].
4
ALAN MEISEL & KATHY L. CERMINARA, THE RIGHT TO DIE: THE LAW OF END-OF-LIFE
DECISIONMAKING, §§ 2.02, 2.06 (3d ed. 2004) (reviewing applicable case law).
5
Id. § 2.05.File: 04.Shepherd Article Created on: 7/1/2005 10:15 AM Last Printed: 9/30/2005 5:06 AM
576 CUMBERLAND LAW REVIEW [Vol. 35:3
and when they do, the living wills often fail to address situations
6
that actually come to pass. This means that our method or process
for determining what should be done for the incompetent patient
is to rely on the judgments of others—usually family members.7
Why? Should we? And if we should, do we do so only in the name
of patient self-determination, or are there other reasons to include
family members?
The Schiavo case offers an opportunity to examine the role of
the family in surrogate decisionmaking and, in particular, our ex-
pectation that in making treatment decisions, the surrogate should
consider no desires other than those of the patient and no interests
other than those of the patient. The law generally expects the sur-
rogate to speak for the patient only as the patient would have spo-
ken. As the Florida Supreme Court has written in the earlier case
of In re Guardianship of Browning: “One does not exercise another’s
right of self-determination . . . by making a decision which the
state, the family, or public opinion would prefer. The surrogate
decisionmaker must be confident that he or she can and is voicing
the patient’s decision.”8 The surrogate decisionmaker very specifi-
cally is not to allow his or her own interests to affect the judgment
about whether treatment should be pursued or discontinued. He
or she is to be neutral.
6
The percentage of adults in the United States completing advance directives
(which include both living wills and durable powers of attorney for health care),
range from four to twenty percent. See Kenneth E. Rosenfeld, M.D., et al., End-of-
Life Decision Making: A Qualitative Study of Elderly Individuals, 15 J. GEN. INTERNAL
MED., Sept. 2000, at 620 (citing JAMES M. HOEFLER, MANAGING DEATH (Westview
Press 1997)). See also Angela Fagerlin & Carl E. Schneider, Enough: The Failure of
the Living Will, HASTINGS CTR. REPORT, Mar.-Apr. 2004, at 30 (providing a recent
and thorough critique of living wills); Muriel R. Gillick, M.D., Advance Care Plan-
ning, 350 N. ENGL. J. MED. 1470-1471 (2004) (placing the figure at fifteen to twenty
percent).
7
Meisel & Cerminara explain that most states have adopted surrogate decision-
making statutes for the purpose of making clear
what is at least implicit in the case law: that the customary medical pro-
fessional practice of using family members to make decisions for patients
who lack decision-making capacity and who lack advance directives is le-
gally valid, and that ordinarily judicial proceedings need not be initiated
for the appointment of a guardian.
MEISEL & CERMINARA, supra note 4, § 8.01.
8
568 So. 2d 4, 13 (Fla. 1990) (emphasis in original). In one of the appellate
court reviews in the Schiavo case, the court wrote that the case “is about Theresa
Schiavo’s right to make her own decision, independent of her parents and inde-
pendent of her husband.” In re Guardianship of Schiavo, 851 So. 2d 182, 186 (Fla.
Dist. Ct. App. 2003) (known as Schiavo IV).File: 04.Shepherd Article Created on: 7/1/2005 10:15 AM Last Printed: 9/30/2005 5:06 AM
2005] SHATTERING THE NEUTRAL SURROGATE MYTH 577
But family members will not generally be, nor should we ex-
pect them to be, the entirely neutral surrogate decisionmakers that
the law in Florida and elsewhere insists upon. Family members
have their own interests in the treatment decisions of their close
relatives that consciously or unconsciously must play a role in their
expression of the patient’s wishes or the patient’s interests. Yet
rather than reject wholesale the method of looking to the family
for surrogate decisionmaking because that method will often fail to
remain unwaveringly true to the value of patient self-
determination, I suggest that we broaden our view as to what values
might properly be weighed in a treatment decision for an incompe-
tent patient. More specifically, the fact that family members have
interests does not necessarily disqualify them as proper surrogates
but may mean that there is some room for recognition and ac-
commodation of those family interests.
The Schiavo controversy is the starting point for this analysis
because it shatters the myth of the neutral surrogate decision-
maker. The designation of who would be surrogate in the Schiavo
case has been a focal point of dissension and controversy. Different
family members who wanted the legal authority to make decisions
for Terri Schiavo would have pursued different treatment op-
tions—with results as opposed as life and death. Had the case not
come before the courts, Michael Schiavo, Terri’s husband, would
have had Terri’s feeding tube removed long before it finally was;
Terri’s parents, Mary and Robert Schindler, if either had been
named surrogate in Michael’s stead, would have continued feeding
her indefinitely.9
9
Either Michael or one of Terri’s parents could have qualified as the surrogate
for Terri, but Michael had priority as her spouse. The surrogate decisionmaking
statute in Florida provides for the following people to serve as surrogate (called
the “proxy”) in the priority listed:
(a) The judicially appointed guardian of the patient or the guardian ad-
vocate of the person having a developmental disability as defined in s.
393.063, who has been authorized to consent to medical treatment, if
such guardian has previously been appointed; however, this paragraph
shall not be construed to require such appointment before a treatment
decision can be made under this subsection;
(b) The patient’s spouse;
(c) An adult child of the patient, or if the patient has more than one
adult child, a majority of the adult children who are reasonably available
for consultation;
(d) A parent of the patient;File: 04.Shepherd Article Created on: 7/1/2005 10:15 AM Last Printed: 9/30/2005 5:06 AM
578 CUMBERLAND LAW REVIEW [Vol. 35:3
Recognizing, as the Schiavo case highlights, that who among
family members “speaks for the patient” can determine the course
of treatment or non-treatment for a patient, it is then necessary to
consider whether we should abandon the method of family surro-
gate decisionmaking altogether. Is this the best method for deter-
mining patient preferences? For promoting patient interests? If
not, can the family’s involvement be justified on other grounds?
How much leeway might properly be given to family interests, and
what limits should circumscribe them?
I. FAMILY MEMBERS AS A SOURCE OF INFORMATION ABOUT PATIENT
PREFERENCES
If satisfying patient self-determination is the primary value to
be protected in the treatment decisions made for the incompetent
patient, then we must seriously question the method of looking to a
designated family member to speak as the patient’s surrogate, as
most state surrogate statutes provide.10 Although family involve-
ment in surrogate decisionmaking is justified primarily as a means
of ensuring that a patient’s own preferences will prevail in treat-
(e) The adult sibling of the patient or, if the patient has more than one
sibling, a majority of the adult siblings who are reasonably available for
consultation;
(f) An adult relative of the patient who has exhibited special care and
concern for the patient and who has maintained regular contact with the
patient and who is familiar with the patient’s activities, health, and reli-
gious or moral beliefs; or
(g) A close friend of the patient;
(h) A clinical social worker licensed pursuant to chapter 491, or who is a
graduate of a court-approved guardianship program. Such a proxy must
be selected by the provider’s bioethics committee and must not be em-
ployed by the provider. If the provider does not have a bioethics com-
mittee, then such a proxy may be chosen through an arrangement with
the bioethics committee of another provider. The proxy will be notified
that, upon request, the provider shall make available a second physician,
not involved in the patient's care to assist the proxy in evaluating treat-
ment. Decisions to withhold or withdraw life-prolonging procedures will
be reviewed by the facility’s bioethics committee. Documentation of ef-
forts to locate proxies from prior classes must be recorded in the patient
record.
FLA. STAT. ANN. § 765.401(1)(a)-(h) (West 2005).
10
See JANET L. DOLGIN & LOIS SHEPHERD, BIOETHICS AND THE LAW 743-49 (2005)
(providing a summary of state statutes and case law regarding surrogate decision-
making).File: 04.Shepherd Article Created on: 7/1/2005 10:15 AM Last Printed: 9/30/2005 5:06 AM
2005] SHATTERING THE NEUTRAL SURROGATE MYTH 579
ment decisions,11 family members may not be the best source for
information about a patient’s preferences. Studies have shown that
they usually cannot predict any more accurately than a stranger
what a close relative might choose in terms of treatment or
nontreatment upon the occurrence of various disease or disability
scenarios.12
The risk that a family surrogate might get it wrong appears
heightened by the fact that usually only one family member is cho-
sen for this purpose. Further, this choice is based on a statutory list
prioritizing potential surrogates by their relationship to the patient
(e.g., spouse comes before parents) rather than an individualized
assessment of who would be most likely to know about the patient’s
preferences. And while different family members may have impor-
tant information to contribute to the surrogate’s knowledge about
a patient’s preferences, there is no systematic mechanism or re-
quirement for gathering such information prior to the surrogate’s
making a decision about treatment.
But even with the most conscientious family member surrogate
who engages in extensive investigation to uncover evidence of pa-
tient preferences, such patient preferences may simply be indeter-
minate. While the law assumes that there is an objective answer to
the question, “What would the patient want?,” there is good reason
to believe that in many instances what the patient would want can-
not be determined with any confidence. As one judge has ex-
plained: “[T]he inquiry at issue is not factual. It is an attempt to
predict a choice that cannot be made.”13 These are often hard
choices involving valuations of continued life, the tolerability of
various degrees of disease, pain, disability, and dependence, fur-
ther complicated by possibilities (though remote) of some degree
of recovery. Hard choices for the patient create even harder
choices for the surrogate.
Finally, unless treatment decisions are challenged by health
care providers or other family members, there is typically no review
11
President’s Comm’n for the Study of Ethical Problems in Medicine and Medical
and Behavioral Research, Deciding to Forego Life-Sustaining Treatment: Ethical, Medi-
cal, and Legal Issues in Treatment Decisions, at 126-28 (1983).
12
Rosenfeld, supra note 6, at 620 (citing several studies). See also Fagerlin &
Schneider, supra note 6, at 36 (“Across . . . studies, approximately 70 percent of
the predictions were correct—not inspiring success for life and death decisions”);
William E. Haley et al., Family Issues in End-of-Life Decision Making and End-of-Life
Care, 46 AM. BEHAVIORAL SCIENTIST 284, 284-98 (2002) (citing and discussing sev-
eral studies).
13
Mack v. Mack, 618 A.2d 744, 771 (Md. 1993) (Chasanow, J., concurring in part
and dissenting in part).File: 04.Shepherd Article Created on: 7/1/2005 10:15 AM Last Printed: 9/30/2005 5:06 AM
580 CUMBERLAND LAW REVIEW [Vol. 35:3
of a surrogate’s decision and no inquiry of the extent to which he
has consulted his own interests, even unconsciously, in determining
the treatment choices for the patient. This appears especially so
when treatment is continued rather than forgone.14
These weaknesses in the reliability of family members to up-
hold the patient’s own preferences about continuing or withdraw-
ing treatment—namely, that patient preferences may be unknown
or indeterminate or overshadowed by family members’ interests—
are evident in the controversy surrounding Terri Schiavo. The
Florida courts, after extensive hearings on the matter, determined
that clear and convincing evidence existed that Terri Schiavo would
not wish to continue to be artificially fed and hydrated in a persis-
tent vegetative state. Yet the evidence that Michael Schiavo intro-
duced to support this conclusion was neither very specific nor very
abundant. It consisted mainly of recollected conversations and
convictions about her values.15 He may well have believed, very
strongly in fact, that Terri would not have wished to continue living
14
Florida’s statute strongly embraces a presumption in favor of life so that a surro-
gate may forgo life-sustaining treatment only if there is clear and convincing evi-
dence that discontinuation of such treatment would be what the patient would
have wanted or in the absence of such information, that discontinuation of treat-
ment would be in her best interests. FLA. STAT. ANN. § 765.401(3) (West 2005).
This heightened evidentiary standard for treatment withdrawal means that deci-
sions to continue treatment are accorded more deference than those to discon-
tinue treatment.
15
According to the Guardian Ad Litem Report, this evidence consisted of conversa-
tions that Michael Schiavo, his brother, and his brother’s wife reported having
with Terri “at or proximate to funerals of close family members who had been on
artificial life support.” Guardian Ad Litem Report, supra note 3, at 15. It should be
noted that Florida law is generally more liberal with respect to its standard for
surrogate decisionmaking regarding end-of-life treatment decisions than some
other states. Some states have required evidence that the patient had actual views
on the subject prior to incompetency, rather than allowing the surrogate to take
account of all relevant knowledge of the patient’s life, values, and personality, in
addition to statements made by the patient, in order to determine what the patient
would choose now, if he or should could form and communicate a choice. That
Florida adopts the latter view of what some courts have called “substituted judg-
ment” is evident in the Florida appellate court’s affirmance of the guardianship
court’s ruling that “clear and convincing evidence at the time of trial supported a
determination that Mrs. Schiavo would have chosen in February 2000 to withdraw
the life-prolonging procedures.” In re Guardianship of Schiavo, 800 So. 2d 640,
642 (Fla. Dist. Ct. App. 2001) (known as Schiavo III). See Norman L. Cantor, Dis-
carding Substituted Judgment and Best Interests: Toward a Constructive Preference Stan-
dard for Dying, Previously Competent Patients Without Advance Instructions, 48 RUTGERS
L. REV. 1193 (1996) (explaining the different approaches that have emerged with
respect to substituted judgment in this context). See also Mack, 618 A.2d 744 (pro-
viding an example of a state’s requiring evidence that the patient had views on the
subject prior to incompetency).File: 04.Shepherd Article Created on: 7/1/2005 10:15 AM Last Printed: 9/30/2005 5:06 AM
2005] SHATTERING THE NEUTRAL SURROGATE MYTH 581
in a persistent vegetative state. The court also must have believed—
with a high degree of confidence in that belief—that Terri would
prefer to die. There was nevertheless very little direct evidence on
this point, and we must wonder whether to obtain the degree of
certainty necessary to meet the clear and convincing standard of
evidence, some degree of projection by the surrogate and court
took place—projecting onto Terri their own convictions that life in
a persistent vegetative state would, after over a decade, no longer
be desirable and perhaps not even tolerable,16 or projecting on her
the similar conviction held by most American adults, eighty to
ninety percent of whom by some studies, would refuse feeding and
hydration in such a condition.17
I question whether anyone really knows what Terri Schiavo
would have wanted. The direct evidence about Terri’s spoken pref-
erences was sparse. Terri’s parents were strongly convinced that
Terri would want to continue living. I should note that if we might
understand Michael Schiavo and the court as possibly projecting
onto Terri Schiavo their own views of vegetative existence, the
Schindlers’ evidence of Terri’s preferences is even more unsat-
isfactory. Near the end of their battle to keep Terri alive, they ar-
gued that she would want continued artificial nutrition and hydra-
tion because the Pope of the Roman Catholic Church had recently
issued a statement that society has a duty to continue such treat-
16
The approach and language of the appellate court’s affirmance of the initial
decision to withdraw nutrition and hydration suggests some amount of sympathy
with the substance of the decision. Rather than focusing on particular testimony
that had been offered in support of Terri’s desire to withdraw treatment, the court
writes:
In the final analysis, the difficult question that faced the trial court was
whether Theresa Marie Schindler Schiavo, not after a few weeks in a
coma, but after ten years in a persistent vegetative state that has robbed
her of most of her cerebrum and all but the most instinctive of neuro-
logical functions, with no hope of a medical cure but with sufficient
money and strength of body to live indefinitely, would choose to con-
tinue the constant nursing care and the supporting tubes in hopes that a
miracle would somehow recreate her missing brain tissue, or whether she
would wish to permit a natural death process to take its course and for
her family members and loved ones to be free to continue their lives. Af-
ter due consideration, we conclude that the trial judge had clear and
convincing evidence to answer this question as he did.
In re Guardianship of Schiavo, 780 So. 2d 176, 180 (Fla. Dist. Ct. App. 2001)
(known as Schiavo I).
17
Brennan’s dissent in the Cruzan case cites a Colorado University Graduate
School of Public Affairs study in which eighty-five percent of those people ques-
tioned answered that they would not want a feeding tube if they became perma-
nently unconscious. See Cruzan, 497 U.S. at 312 n.11 (Brennan, J., dissenting).File: 04.Shepherd Article Created on: 7/1/2005 10:15 AM Last Printed: 9/30/2005 5:06 AM
582 CUMBERLAND LAW REVIEW [Vol. 35:3
18
ment as a form of basic care. To draw such a conclusion would
have required giving great weight to the Schindlers’ interpretation
of Terri’s religious beliefs and, more particularly, her specific dedi-
cation to papal directives. Moreover, it would have required leap-
ing over obvious logical trouble spots. For one, Terri’s views on
this matter could not have been influenced by this particular state-
ment because it was issued just last year19 and according to a
number of scholars, represents a divergence from the past positions
of the Catholic Church.20 Secondly, the fact that the Pope declared
that society has a duty to feed individuals in a persistent vegetative
state does not necessarily translate into a duty on the part of the
individual to accept such feeding. In making their arguments, the
Schindlers appeared to be grasping at straws to produce any solid
evidence of Terri’s preferences in favor of continued feeding. The
credibility of this evidence suffered even more in light of other tes-
timony by Schindler family members suggesting that Terri’s prefer-
ences weren’t foremost in their minds anyway. When asked about
their views regarding treatment under various hypothetical scenar-
ios, Schindler family members, according to a guardian ad litem’s
report, “stated that even if Theresa had told them of her intention
to have artificial nutrition withdrawn, they would not do it.”21
If Terri’s preferences were truly being honored during her in-
competency, which family member served as surrogate should not
have mattered. But of course it did matter, which is why the
Schindlers fought for over eight years to remove Michael Schiavo as
Terri Schiavo’s guardian. Under the law of Florida, either Michael
Schiavo, as spouse, or the Schindlers, as parents, could have been
the surrogate decisionmaker in this case (although Michael had
priority). If the treatment decision had been made outside the
purview of judicial review, as the vast majority of such decisions are,
then the law would have permitted and sanctioned two very differ-
ent decisions regarding treatment—one resulting in death and the
18
See Appellants’ Initial Brief, In re Guardianship of Schiavo, No. 2D04-4755, 2004
WL 3044727 (Fla. Dist. Ct. App., Nov. 22, 2004), available at http://www.terrisfight.
org (supporting appeal of trial court’s dismissal of the Schindlers’ motion for
relief from judgment on these grounds).
19
The Schindlers’ response to this argument was that whatever her decision was
before the Pope spoke, Terri would decide, after the Pope’s pronouncement, to
continue the provision of nutrition and hydration, and that this later decision is
what mattered.
20
See generally Leonard Jack Nelson, III, Catholic Bioethics and the Case of Terri
Schiavo, 35 CUMB. L. REV. 543 (2005) (discussing various positions among Catholic
scholars regarding the provision of medically assisted hydration and nutrition to
patients in a persistent vegetative state).
21
Guardian Ad Litem Report, supra note 3, at 16.File: 04.Shepherd Article Created on: 7/1/2005 10:15 AM Last Printed: 9/30/2005 5:06 AM
2005] SHATTERING THE NEUTRAL SURROGATE MYTH 583
other in life—in the name of Terri’s right to self-determination. If
the Schindlers had not protested, Michael Schiavo would have had
the feeding tube removed long ago; on the other hand, if he had
stepped aside and allowed Mary or Robert Schindler to be Terri’s
surrogate, the feeding tube would likely have remained in place for
twenty years or more. In either case, we would be justified in a cer-
tain lack of confidence that Terri’s preferences were satisfied.
II. OTHER JUSTIFICATIONS FOR FAMILY DECISIONMAKING: A BROAD
UNDERSTANDING OF PATIENT AUTONOMY AND SOME RESPECT FOR
FAMILY MEMBERS’ OWN INTERESTS
Rather than reject family surrogates outright because of these
weaknesses, we may do better to recognize a broader, more tolerant
understanding of patient self-determination. The implicit defini-
tion of self-determination in much of the law of end-of-life deci-
sionmaking is a narrow one. Under such a narrow understanding
of self-determination, the surrogate’s duty is to consider what the
patient would want if the patient were thinking only of herself out-
side of the context of the relationships she has with family and oth-
ers. This narrow understanding is suggested by the language of
many state statutes governing surrogacy decisionmaking as well as
court decisions that have considered the standard for determining
patient preferences. We might call this a selfish understanding of
self determination—not to suggest that it is morally suspect, but to
emphasize that only the self—the patient’s self—is to be consid-
ered. By contrast, we might think of the broader understanding of
self-determination not as unselfish but as contextualized—
recognizing the network of caring relationships in which patients
are often, we wish always, embedded.
This broader understanding of patient self-determination is
justified by the reality of patients’ lives and in turn justifies our de-
cision in the ordinary case to defer to the patient’s family for at
least two reasons. First, whether family members are more apt to
“get it right” with respect to predicting patient preferences (a
doubtful proposition, as we have seen), people generally want fam-
ily members to make these decisions. Most Americans believe that
family members should make end-of-life treatment decisions for
their close relatives.22 Joanne Lynn, a doctor with many years of
22
See Matter of Jobes, 529 A.2d 434, 446 & n.11 (N.J. 1987) (reporting on surveys);
Stephen C. Hines et al., Dialysis Patients’ Preferences for Family-Based Advance Care
Planning, 130 ANNALS OF INTERNAL MED. 825, 825-28 (1999); D.M. High, All in the
Family: Extended Autonomy and Expectations in Surrogate Health Care Decision-making,
28 THE GERONTOLOGIST 46, 46-51 (1988).File: 04.Shepherd Article Created on: 7/1/2005 10:15 AM Last Printed: 9/30/2005 5:06 AM
584 CUMBERLAND LAW REVIEW [Vol. 35:3
clinical expertise in caring for dying patients, writes that in her
practice, patients have often chosen not to specify in advance what
they wished regarding treatment, deferring instead to their rela-
tives, and when “challenged with the possibility that the next of kin
might decide in a way that was not what the patient would have
chosen, the patient would kindly calm [Lynn’s] concern with the
observation that such an error would not be very important.”23 In
some substantial way, then, a patient’s self-determination may be
furthered by deferring to a close family member to make treatment
decisions—even if the family member who acts as surrogate is mis-
taken about what the patient would want. In fact, the low rate at
which living wills are executed despite the resources that have been
poured into promoting them may mean that for many people, their
true preference is not to try to specify in advance what they would
want but to defer to their next of kin’s choice regarding the issue.
A second reason to include the family in decisionmaking for
the patient, even though family members may not be knowledge-
able of patient preferences and may not, in fact, be objective about
the matter, is that the patient would want the family member to
take his or her and, indeed, other family members’ interests into
consideration in making treatment decisions for the patient. This
justification, then, is also grounded in the patient’s right to self-
determination. On the surface, however, it may appear exactly
counter to self-determination because it admits the interests of
others. Yet, it is easy to imagine that many individuals would wish
their loved ones’ own interests to be considered in the decision,
even in some instances more than their own self-regarding prefer-
ences. Speaking from personal example, even if I would prefer the
withdrawal of artificial nutrition and hydration if in a persistent
vegetative state, in the event my surrogate (my husband) thought it
best for my minor children that nutrition and hydration be contin-
ued for some period of time in order for them to adjust, then I
would wish him to continue it, being guided primarily by concern
for our children’s well-being. This strikes me as neither unusual
nor unique. Some courts, in fact, in evaluating evidence of the pa-
tient’s desires have included a consideration of the impact of the
decision on the patient’s family just as the patient would have him-
self.24
23
Joanne Lynn, Why I Don’t Have a Living Will, 19 LAW, MED. & HEALTH CARE 101,
101-04, (1991).
24
See Brophy v. New England Sinai Hosp., Inc., 497 N.E.2d 626, 631-32 (Mass.
1986) (approving judge’s consideration of evidence regarding Brophy’s judgmentFile: 04.Shepherd Article Created on: 7/1/2005 10:15 AM Last Printed: 9/30/2005 5:06 AM
2005] SHATTERING THE NEUTRAL SURROGATE MYTH 585
We might also justify giving wide berth to family deci-
sionmaking for another reason, one that is not in furtherance of
patient self-determination but that instead understands and ac-
knowledges that family members have interests of their own that
might well deserve protection.25 Family members are not merely
conduits of patient preferences. They are people, too. They have
their own preferences. In many of these instances, their suffering
exceeds that of the patient’s as they, with all their faculties intact,
experience fully the loss of their spouse’s companionship, the grief
of their parent’s decline, the uncertainty in their own minds about
the morality of the choices they are asked to make.
While as a general rule family surrogate preferences should
not override patient preferences, they should not be entirely ig-
nored either.26 I submit that we need to allow some accommoda-
tion of those family interests within our legal processes. The extent
to which we allow that accommodation to skew decisions that might
otherwise be made is an open question.
To illustrate more concretely these latter justifications for fam-
ily surrogates—that is, a broader notion of patient self-
determination and an appreciation of some degree of family mem-
bers’ own interests, I turn now briefly to another recent Florida
case.
In the fall of 2004, the doctors of Hanford Pinette, a seventy-
three-year-old man, certified that he was in a terminal condition.27
He was suffering from chronic failures of his respiratory, circula-
tory, and renal systems. In 1998, he had signed a living will that,
according to news reports, directed that life-sustaining treatment
that included the impact on his family). See also the passage quoted from Schiavo I,
supra note 16.
25
See Kathleen M. Boozang, An Intimate Passing: Restoring the Role of Family and
Religion in Dying. 58 U. PITT. L. REV. 549 (1997) (arguing for legal changes to
respect the family’s interests in end-of-life decisions). Professor Boozang’s pro-
posal calls for deference to family decisionmaking without the restraints of a “sub-
stituted judgment” or “best interest” rubric and with particular respect for the
family’s religious beliefs. See also Nancy K Rhoden, Litigating Life and Death, 102
HARV. L. REV. 375 (1988) (proposing legal presumption in favor of the choice of a
close family member).
26
Contra Mack v. Mack, 618 A.2d 744, 760 (Md. 1993) (rejecting judicial adoption
of a “best interest” standard advocated by patient’s surrogate that “enlarges the
concept of best interest beyond the needs of the ward to include consideration of
the emotional and financial impact on, and desires of, [the patient’s] family and
of the burden on the limited resources of society”).
27
The facts of this case are gleaned from newspaper reports. See Mike Branom,
Judge Upholds Living Will, TALLAHASSEE DEMOCRAT, Nov. 24, 2004, at 6B; Anthony
Colarossi & Melissa Harris, Living-Will Questions Persist; A Lake Case Causes Some to
Wonder If Their Wishes Will Be Followed, ORLANDO SENTINEL, Nov. 25, 2004, at B1.File: 04.Shepherd Article Created on: 7/1/2005 10:15 AM Last Printed: 9/30/2005 5:06 AM
586 CUMBERLAND LAW REVIEW [Vol. 35:3
be withheld in these circumstances. His wife of fifty-three years was
distraught. Her husband had named her his health care surrogate,
yet she was in disagreement with the doctors about the state of her
husband’s condition and the application of his living will. She said
that he still enjoyed watching sports on television with other family
members and that he was responsive. She insisted that he would
not yet want to die. When the matter ended up in court upon the
petition of hospital administrators, the circuit court interpreted the
living will as applying to the circumstances at hand and ordered the
discontinuation of life-sustaining treatment. The picture published
in the Tallahassee Democrat to go along with the story showed an
elderly woman who was supported by her attorney as she expressed
her grief in the courtroom.
While immediate responses to the Pinette case varied, they
were on the whole generally positive.28 The living will had tri-
umphed. After years of reports that people do not execute living
wills in high percentages, that they are difficult to apply, that they
are routinely ignored—here was a case in which a living will had
been written, it seemed fairly straightforward to apply, and hospital
officials and health care providers, rather than ignoring the living
will, were insisting that it be followed. For those who have champi-
oned the living will as an instrument for effectuating choice and
control in the dying process, for honoring patient self-
determination, the case was a success and the judge was to be ap-
plauded for his courage in giving effect to a person’s living will in
the face of disagreement from his health care proxy. A president
of a local hospice urged that the lesson to be learned from the con-
troversy was that family members may not make the best health
care proxies because of their emotional involvement.29
My view of the case is more guarded. Are we certain that this
legal outcome is what Mr. Pinette wanted? Even from a pro-
patient-self-determination perspective, we can make an argument
for not rushing to implement the living will. We might ask, “Would
the husband really mind so much if his wife insisted on a bit more
time?” If he were subjected to pain during this extra time when his
apparent wishes to die were not respected, then we should be more
hesitant to extend his life by extraordinary means, but if he is not
in pain, then it does not seem unimaginable to say that it could well
be what he would want. The evidence of his long-standing relation-
ship with his wife, the evidence of her continuing devotion to him,
the fact that he named her as health care proxy, may suggest as
28
See Colarossi & Harris, supra note 27, at B1.
29
Id.File: 04.Shepherd Article Created on: 7/1/2005 10:15 AM Last Printed: 9/30/2005 5:06 AM
2005] SHATTERING THE NEUTRAL SURROGATE MYTH 587
much (perhaps even more) about what he would have wanted as
the clumsy legal mechanism of a likely vague and indeterminate
document that he executed in a state of relatively good health. In
fact, if an individual writing a living will would have known that a
beloved family member would need a little extra time, he may well
have placed a provision to that effect in his living will, if he had
considered it. Perhaps we should add a new “check the box” to
living wills—a provision such as, “If my family needs a little extra
time, it’s okay to prolong my dying process by artificial means—but
be mindful of the pain.”
Moreover, the fact that he executed both a living will and a
health care power of attorney may suggest that he did so as further
protection of his wife’s decisionmaking power rather than as a limi-
tation upon it. We have all heard stories of families not being per-
mitted to end life support when they thought best, stories as
prominent as the Cruzans’ and others that are known to us
through friends and family. It seems reasonable that Mr. Pinette
may have wished, as at least one aim in writing a living will, to pro-
vide Ms. Pinette with the documentation needed to support her
decisions. If she determined that it was “best” that life support be
withdrawn, then she would have less difficulty doing so with a
properly executed living will. Ironically, then, he may have exe-
cuted the living will to allow his wife to avoid a controversial legal
battle if she determined that it was appropriate to withdraw life-
sustaining treatment; instead, she became embroiled in a legal bat-
tle because of it.
Additionally, it is not uncommon for those who advise patients
to execute a living will to describe it as a gift that they can give their
loved ones. Instead of leaving it to family members to agonize over
treatment options, to make life or death determinations, to try to
discern what the patient would have wanted, the living will theo-
retically relieves family members of difficult choices because the
patient has taken responsibility for them. If we saw Mr. Pinette as
less of a staunch individualist trying to control the detailed circum-
stances of his death and as more of a protective husband who
wished to relieve his wife of burdensome tasks, then we might see
the living will in a different light and might be less inclined to pit it
against his wife in litigation that almost looks like Mr. Pinette versus
Ms. Pinette.
Finally, putting aside patient self-determination, narrowly or
broadly understood, where, I ask, is our sympathetic response to
the wishes of a wife of fifty-three years to continue life in the com-
pany of her husband? A wife of many years was having severe diffi-
culty accepting the demise and inevitable death of her husband—File: 04.Shepherd Article Created on: 7/1/2005 10:15 AM Last Printed: 9/30/2005 5:06 AM
588 CUMBERLAND LAW REVIEW [Vol. 35:3
an understandable emotional response for which we should have
much sympathy. Is no accommodation of her interests permitted?
Some delay, I submit, should be acceptable. In other words, I
am not too terribly bothered by the fact that a now incompetent,
terminally ill individual may live a few days, maybe even a few weeks
or months, longer than we think he would have preferred if that
extra time is of value to family members.30 This position may be
quite scandalous in the current heyday of patient autonomy, but I
think it is both realistic and mindful of our responsibilities to other
people in addition to the patient.
The assumption in the law has been and continues to be that
family involvement in end-of-life decisionmaking is merely part of
the process—a means of determining the patient’s wishes or her
best interests. But the reality is that family involvement goes
deeper than that and probably should. How to navigate that fur-
ther involvement, how to recognize and respect family members’
own interests in a patient’s continued life or hastened death, and
yet to limit the effect of those interests so that they do not over-
come the patient’s own interests and preferences is a challenge we
have yet to adequately address. Here are some preliminary
thoughts.
Reasonable accommodation of family interests and a broad
understanding of patient self-determination in the context of a pa-
tient with close relationships with family, would likely support the
following:
a. Some amount of delay in order to allow family members
to understand the patient’s condition and to accept it.
b. Some deference to the surrogate, whether appointed by
the patient or designated by statute, in interpreting a liv-
ing will, when one has been executed by a patient.
c. Respectful communication of clear and consistent
information about the patient’s condition and prognosis.31
This includes the provision of opportunity for the family
members to convey to the physicians and other providers
30
In this case, it appears that Ms. Pinette was given some amount of time to be-
come adjusted to her husband’s condition. Whether it was enough time, I do not
think we can judge without more information about the particulars. We do know
according to news accounts that doctors had treated Mr. Pinette for several
months with, according to the doctors, no change in his condition except for the
worse and with no significant responsiveness.
31
An accommodation that should likely extend, in the judgment of health care
professionals and in consultation with the surrogate, to close family members in
addition to the statutorily designated surrogate.File: 04.Shepherd Article Created on: 7/1/2005 10:15 AM Last Printed: 9/30/2005 5:06 AM
2005] SHATTERING THE NEUTRAL SURROGATE MYTH 589
information about what they have observed of the pa-
tient’s condition, responsiveness, etc.
d. Sympathy, consolation, and care.32
These considerations appear appropriate even in the presence
of a living will that appears to speak definitively regarding the
treatment decision that the patient would make. In the absence of
such a living will, when we must determine what should be done by
asking the patient’s surrogate, I add the following:
e. Deference to the surrogate’s decision regarding the pur-
suit or withdrawal of life-sustaining treatment as long as
that decision does not appear improperly motivated, such
as by personal greed, and as long as the decision is within
certain parameters of known or discernible patient pref-
erences, patient interests, and other socially adopted
norms, about which more later.
f. An opportunity for family members who are not the des-
ignated surrogate to contest the decision of the surrogate
and obtain judicial review.
III. THE SCHIAVO CASE
The latter two “rules” above—deference to the surrogate’s de-
cisions, and an opportunity for family members to contest those
decisions—are indeed generally (though not entirely) reflective of
the law in Florida and were for the most part appropriately applied
in the case of Terri Schiavo. Michael Schiavo’s decision to termi-
nate nutrition and hydration was ultimately adopted in the form of
a court order. While deference to the surrogate is not actually the
law “in the books” when surrogates seek to withdraw life-sustaining
treatment (since to do so they must meet a high evidentiary stan-
dard that treatment withdrawal would be the patient’s wish), never-
theless the law “in action” appears to have given adequate defer-
ence to Michael’s decision in the form of the court’s willingness to
believe his assessment of Terri’s preferences. With respect to the
second “rule,” that of participation by other family members,
Terri’s parents had ample opportunity—more than ample oppor-
tunity—to make their case for a different decision. They simply
were unable to convince the court that Michael was improperly
32
For some ideas on how care might become an institutional priority that is meas-
ured and reported, see Mark A. Hall, A Corporate Ethic of ‘Care’ in Health Care, 3
SEATTLE J. FOR SOC. JUST. 417, 422-423 (2004) (noting, among other things, that
“mechanisms of accreditation, standards for tax exemption, conditions for partici-
pating in Medicare, and direct regulation of hospitals and health insurers would
all amplify and steer the market in a more socially conscious direction”).File: 04.Shepherd Article Created on: 7/1/2005 10:15 AM Last Printed: 9/30/2005 5:06 AM
590 CUMBERLAND LAW REVIEW [Vol. 35:3
motivated in making his decision or that his decision was counter
33
to Terri’s preferences.
The Schindlers and others charged, however, that Michael
Schiavo’s own self-interest improperly influenced the decision to
withdraw treatment and that inadequate attention and respect were
paid to the preferences and interests of Terri Schiavo. For exam-
ple, in Governor Jeb Bush’s petition for certiorari to the United
States Supreme Court for review of the constitutionality of Terri’s
Law (a petition that was denied), he argued that Terri Schiavo’s
federal due process rights were violated when the guardian ordered
the withholding of nutrition and hydration because she did not
have a disinterested guardian to advocate for her interests.34
Throughout the Governor’s involvement in the case, his office
charged that Michael Schiavo should not have been allowed to
speak for Terri since he stood to gain financially upon her death as
heir to the remainder of the medical malpractice that he had ob-
tained on her behalf.35 Likewise, the Schindlers, in one of their
later rounds of legal maneuvering, petitioned for review of the
court’s order to remove tube feeding on the grounds that Terri
should have been represented by her own lawyer.36 These argu-
ments are unconvincing for a number of reasons.
The Florida appellate court, when confronted early on with
the charge that Michael Schiavo was an improper surrogate be-
cause of his financial interests in Terri Schiavo’s death, countered
in two ways. First, the court noted that surrogates will generally
have financial interests that are bound up with the decision to con-
33
While there is a provision in Florida law to allow an interested party, such as a
family member, to challenge the decisions of a health care proxy through a court
proceeding, Michael Schiavo pre-empted any such challenge by the Schindlers by
himself seeking court approval of his decision. In fact, he avoided taking on the
role of decisionmaker on the issue—asking the court instead to step in, hear the
relevant evidence, and make the decision itself.
34
See Petition for a Writ of Certiorari, Bush v. Schiavo, No. 04-757, 2004 WL
2790640 (U.S. Dec. 1, 2004), cert. denied, 125 S. Ct. 1086 (2005).
35
See, e.g., On the Record with Greta Van Susteren (FOX News television broadcast,
Jan. 9, 2004) (Ken Connor, attorney for Governor Jeb Bush, stating, “The testi-
mony that’s been offered by the husband, who has a stake in her death and who
stands to gain financially and otherwise by her death, is uncorroborated.”), partial
transcript available at http://www.foxnews.com.
It is important to note that while the court acknowledged that Michael Schiavo
might have financial interests in Terri’s death, and the Schindlers in Terri’s life,
the court did not ascribe such motives to either side. Rather, it did not see any
evidence that financial interests were motivating the parties in their opposing
quests to determine Terri’s fate. See Schiavo I, 780 So. 2d at 178.
36
See In re Guardianship of Schiavo, No. 2D05-968, 2005 WL 600377 (Fla. Dist. Ct.
App. Mar. 16, 2005).File: 04.Shepherd Article Created on: 7/1/2005 10:15 AM Last Printed: 9/30/2005 5:06 AM
2005] SHATTERING THE NEUTRAL SURROGATE MYTH 591
tinue or discontinue feeding—the people who are either desig-
nated as surrogates by the patient, or who are designated by statute,
are often people who stand to inherit a portion of the estate of the
patient.37 Second, the court pointed out that the Schindlers could
also be understood as having a financial interest in the decision
whether to continue to feed Terri. If they were able, through legal
maneuvering, to keep Terri alive long enough so that Michael
Schiavo would seek a divorce in order to continue his own life with
perhaps a new wife, then they would stand to inherit from Terri’s
estate. They would, accordingly, have a financial interest in keep-
ing her alive until Michael divorced her, at which time they could
authorize the withdrawal of life-sustaining treatment.38
Unless there is evidence that financial interests are actually
improperly motivating a surrogate to make a decision about treat-
ment withdrawal, we usually do not let the mere possibility of fi-
nancial gain to disqualify a surrogate. Our view of the patient’s
interest in or preference for family decisionmaking speaks against
such easy disqualification. Moreover, as we have seen, financial
interests are not the only personal interests of family members that
may affect their assertion of patient preferences. Some family
members may be interested in not having memories of the patient
marred by seeing him or her in a debilitated state for a prolonged
period of time. They may project onto the patient their own views
about the patient’s current “undignified” state. Other family
members may have interests in keeping the patient alive simply
because they are unable to let the patient go, to accept the loss of a
loved one. Still others may be influenced to keep a patient alive by
their religious views about the sanctity of life and a perception of
their own duties not to be involved in the hastening of anyone’s
death.
The family surrogate is not neutral, it is true, but neutrality is
not the primary value that family surrogate decisionmaking pro-
motes—rather, it is a concept of the patient within a family, where
37
Schiavo I, 780 So. 2d at 178.
38
Id. The court also pointed out that Michael Schiavo had requested the court to
act as surrogate decisionmaker, and thus he was not, in actuality, the one to make
the decision to disconnect life-support. Id. While this appears to be technically
true, it does not seem to be of much import. Even if Michael Schiavo had insisted
that he were acting as the surrogate, the Schindlers, as interested parties, would be
able to challenge his decision. In any case, a court would review the evidence to
determine if there were clear and convincing evidence of Terri Schiavo’s wishes.
Governor Bush, however, in his Petition for Writ of Certiorari to the United States
Supreme Court, makes much of the trial court’s assumption of the role of surro-
gate, arguing that the court could not be both advocate and judge. Petition for a
Writ of Certiorari, Bush v. Schiavo, No. 04-757, 2004 WL 2790640.File: 04.Shepherd Article Created on: 7/1/2005 10:15 AM Last Printed: 9/30/2005 5:06 AM
592 CUMBERLAND LAW REVIEW [Vol. 35:3
patient as individual, patient as family member, and even family
member as interested party, are all to some extent valued. While
the family surrogate is not—cannot be—neutral, to the extent the
surrogate might be improperly motivated by greed (of which there
was no evidence here), or the surrogate is making decisions outside
of the legal norms that the state of Florida has adopted (here, pa-
tient preferences, patient interests, and a presumption in favor of
life), there are, and were in the Schiavo case, checks on the surro-
gate’s discretion.
The Schindlers’ real complaint appears to have been about the
legal norm of permitting withdrawal of nutrition and hydration in
any circumstances, not specifically about Michael Schiavo’s or the
court’s procedures for determining in this instance whether the
legal criteria were satisfied for the withdrawal. Yes, they did claim
that Terri Schiavo was not in a persistent vegetative state (one of
the three conditions under Florida statutory law in which artificially
provided nutrition and hydration may be withdrawn).39 And, yes,
they also claimed that Michael Schiavo was dishonest in his render-
ing of conversations with Terri about her wishes regarding continu-
ing life in a severely compromised position. They claimed that
Terri’s religious beliefs would have directed her to continue living
in her current condition and that if the Catholic Church changed
its position with regard to these matters during her long period of
unconsciousness, she too would have changed her position in con-
formity with the Church’s. Their arguments reached every imagin-
able crevice in the legal architecture of end-of-life decisionmaking.
But statements that they made clearly indicated that even if they
had believed that Terri was in a persistent vegetative state and that
she had in fact indicated that she would not want to live in such
circumstances, they still would have fought and would have fought
vigorously the removal of her feeding tube. At the heart of their
complaint was not disagreement with the method of family surro-
gacy per se—they would have been more than happy to operate as
surrogates themselves under these rules—but disagreement with
the principle that artificial nutrition and hydration could be with-
drawn from anyone, especially their daughter.40 And that is simply
39
FLA. STAT. ANN. §§ 765.401, 765.305 (West 2005).
40
The Schindlers and their supporters repeatedly charged that Michael Schiavo
and the courts made decisions to “starve” Terri to death. Following the passage of
Terri’s Law, a new bill was introduced in the Florida legislature that would have
made it more difficult for a surrogate to withdraw a patient’s artificial nutrition
and hydration. See Starvation and Dehydration of Persons with Disabilities Preven-
tion Act, S.B. 692 (Fla. 2004). The proposed statute was not passed. For an analy-
sis of the bill, see Lois Shepherd, Changing the Rules on Withdrawing Nutrition andFile: 04.Shepherd Article Created on: 7/1/2005 10:15 AM Last Printed: 9/30/2005 5:06 AM
2005] SHATTERING THE NEUTRAL SURROGATE MYTH 593
a different issue from the decisionmaking process itself.
We might quell concerns about lack of neutrality in the
Schiavo case by pointing to the years of litigation and reams of
findings of fact and conclusions of law, but that does not answer
whether in the ordinary case we might have more concern. As
pointed out earlier, without judicial process, which is not required,
the “accident” of who is named surrogate can determine the fate
(life or death) of individuals whose treatment decisions are subject
to these surrogate statutes. How bothered should we be by the fact
that Michael Schiavo and the Schindlers could each have qualified
as surrogate and would have pursued drastically different courses of
action in Terri’s treatment? If we should grant significant defer-
ence to the decisions of surrogates, as I have argued, then inconsis-
tencies such as this will occur.
In the case of a patient who has less than six months to live, I
would say that this inconsistency is something we should be satis-
fied with. The alternatives—judicial review in every case or some
kind of required joint family decision—do not seem appealing,
carrying their own deficiencies such as unwanted delay, heightened
conflict, loss of privacy, and the intrusion of cold, impersonal proc-
esses in a time of private sorrow. In any event, when dealing with
such a patient, the consequences of contrary surrogate positions
(i.e., one plausible surrogate says to vigorously pursue treatment
and another to withdraw it) will be relatively short-lived. The pa-
tient, unfortunately, is expected to die soon anyway, and thus the
consequences of a mistaken decision (under current norms, a mis-
take about patient preferences or interests) will be limited.
But in the case of the person who is permanently unconscious
and who may—because of the assignment of surrogate status to one
family member over another, either live for thirty years or die next
week—real cause for concern exists. In such a case, judicial review
of a surrogate’s decision should be in order even without challenge
from another family member or health care provider. A surro-
gate’s mistaken understanding of the patient’s preferences can
mean a difference of decades of life.
Personally, I am more concerned here with the consequences
of a mistaken decision in favor of continued life than one in favor
of death. The consequences of ignoring the preferences of a per-
manently unconscious individual to forgo life-sustaining treatment
makes the person vulnerable to abuse by others, even if that person
cannot experience it. The current slant of Florida law, which
Hydration: From “Terri’s Law” to the “Starvation and Dehydration” Bill, FLA. BAR PUB.
INT. L. SEC. REP., April 2004, at 1.You can also read
