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9 Harv. Negot. L. Rev. 253
Harvard Negotiation Law Review
Spring 2004
Article
NEGOTIATING DEATH: ADR AND END OF LIFE DECISION-MAKING
I. Glenn Cohend1
Copyright (c) 2004 Harvard Negotiation Law Review; I. Glenn Cohen
I.
II.
III.
IV.
Introduction
Four Case Studies
The Assumption of Binary Resolution and the Shadow of Law
A. A Brief History of Death and Dying Judicial Decisions
B. The Massachusetts Experience
Towards an ADR Model
A. Two Threshold Objections
1. There is No Room for ADR
2. We Want Litigation
B. A Positive Argument for ADR in End of Life Decision-making
1. Court Adjudication is Too Slow
2. ADR Lowers Transaction Costs for Participants and May Reduce Lumping
3. ADR Accepts Rather Than Masks the Value-Laden Nature of the Inquiry
4. Autonomy and Self-Actualization for the Patient
5. Resolution of Legal and Ethical Issues are Insufficient When There is a Need for
Emotional Settlement
a) Powerful Losers in the Adjudicatory Model
b) Emotional Settlement as Value Added
6. Multiparty Issues
C. Objections and Reservations
1. Due Process
2. When is ADR Not Appropriate?
A Sketch of an ADR Model for End of Life Decision-making
A. Guiding Principles
B. The Model in Practice
Conclusion
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*254 Introduction
In 2003, the well-publicized case of Terry Schiavo captivated America and painted a chilling picture of end of life
decision-making at the beginning of the 21st century. Schiavo was found by her husband on the floor of her house before
dawn thirteen years earlier, her heart stopped. She has been in a persistent vegetative state ever since with no ability to
communicate.1 Unable to eat or drink, she has been sustained by a feeding tube and the subject of a protracted battle that has
wound its way through the courts.2 Her husband, Michael, wants the tube removed, and claims it is what Terry wanted. 3 Her
parents have steadfastly opposed any such action.4 It has taken over six years for the courts to resolve this end of life
decision-making dispute,5 but within six days of the removal of the feeding tube authorized by a Florida court order,
Governor Bush signed into law a bill that allowed him to order the feeding tube reinserted in this particular case.6 The law is
being challenged under both the federal and Florida constitutions, 7 and its legality will likely remain unresolved for some
time.
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But the lesson of the Schiavo case does not depend on the resolution the courts eventually arrive at; what the Schiavo case
teaches us is about process, something the ADR community has always viewed *255 as essential. The Schiavo case
demonstrates something bioethicists and other health care professionals have long known: the judicial system has repeatedly
failed as a process for resolving end of life treatment disputes involving incompetent or questionably competent patients. The
keys are to understand why litigation fails, and how ADR can meaningfully improve on the status quo.
This article suggests what such a possibility may look like. It argues that negotiation theory and ADR models are powerful
tools for the health care system to fashion better dispute resolution. It also analyzes some of the philosophical, social, and
legal problems related to implementing such a system. This article limits itself to a narrower focus: cessation or refusal of
treatment, though many of its conclusions may be applicable to cases of “active euthanasia” and “physician-assisted
suicide.”8
Part I develops four illustrative case studies that span many of the issues in end of life decision-making. Part II analyzes the
current *256 legal landscape and suggests that an assumption of total adjudicative or total private decision-making has
dominated the discourse. Part III interrogates the suitability of ADR for death and dying decision-making. Finally, Part IV
briefly sketches what an ADR solution might look like from a dispute design system point of view.
I. Four Case Studies
Mary C. Northern
Mary C. Northern, age 72, lived alone in a run-down shack with no relatives or friends able to care for or support her. She
was admitted to the Nashville General Hospital for gangrene of both feet. Her gangrene was probably due to frostbite.
When informed that amputation of both of her feet would be necessary to save her life, she adamantly denied that her feet
were infected. Ms. Northern believes that her feet are black from soot and that her feet will heal without surgery. She refuses
to even consider the possibility of surgery. She has no desire to die but rather believes that amputation is unnecessary and that
her doctors are lying to her. She is an articulate and communicative individual, who is not willing to accept the seriousness of
her condition or the consequences of not operating.
The hospital’s psychiatrist found Ms. Northern lucid, but believes she is suffering an acute psychotic episode concerning the
status of her feet. The doctor in charge of her case estimates the chance of the operation succeeding at fifty percent, but
realizes that even after a successful procedure, she would suffer severe mobility deficits and have a high likelihood of
post-operative psychosis due to the amputation. The probability of survival without amputation is five to ten percent. Ms.
Northern’s condition is critical, and she will be inoperable within the span of a few days time. When asked whether she
would prefer dying to losing her feet, Ms. Northern repeatedly denies that she could lose her feet. When pressed with the
question, she merely responds “possibly.”
What should be done?9
Baby Brisay
Dr. Natalie Brisay is a primary care physician in private practice in Chicago. She is eight and a half months pregnant, and
awakes to labor pains on a December evening. Her husband *257 Phillip grabs the blue suitcase they have prepared with her
belongings, and they travel the well-practiced route to the hospital.
After a thirteen-hour labor, more painful than the one she experienced with her previous two sons, Natalie gives birth to a
four and a half pound baby, whom the Brisays name Jessica.
A battery of routine neonate tests reveal that the child is suffering from Lesch-Nyhan syndrome. Infants with this disease
appear normal at birth, but at approximately six months begin a process of neurological and physiological deterioration
beginning with athetosis (involuntary writhing movements). The children suffer severe mental deficiency and a tendency
towards compulsive self-mutilation. This often requires placing the child’s elbows in splints, wrapping her hands in gauze,
and sometimes extracting all her teeth. Even more immobilizing restraints may be necessary if the child continually bangs her
head against inanimate objects. There is no known cure.
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Jessica also suffers from a duodenal atresia, a failure of the small intestine to properly form a patent opening, such that she
could not be fed. It could be corrected with a relatively simple surgical procedure, but without treatment the baby would
starve to death in a matter of days.
When asked to consent to surgery to remove the atresia, the Brisays ask for some time to consider the question. Several hours
later they refuse to give consent. The Brisays believe they would be incapable of giving Jessica the love and attention her
disorder required without depriving their other two children. The Brisays are aware that severely retarded children have
almost no chance of adoption, and believe that their only available alternative would be institutionalization in a state-run
facility.
The physicians at Chicago Memorial are markedly uncomfortable with the Brisay’s decision, knowing that they would need
to watch as Jessica slowly starved to death, which could take as long as twelve days, while they could do nothing more than
moisten her lips and throat to prevent suffering.
What should be done? Who should decide? 10
*258 Gina Pallone
Gina Pallone was diagnosed with Amyotrophic Lateral Sclerosis (ALS, also known as Lou Gehrig’s disease) and had steadily
declined for eight years. Before contracting the disease, she was a successful consultant. Now, at forty-two, paralysis has
spread through her entire body, leaving the once-active woman inert on a bed in the back ward of a large public hospital. Her
chest muscles are frozen, so she can only breathe on a ventilator. She is unable to chew or swallow and is nourished through
a gastostomy tube directly to her stomach. She has voluntary muscular control over only her eyelids. Her mind remains sharp.
A medical student devised a complex set of codes with Gina using a letter board. The first message she blinked was “thank
you.” The second, “I want to die.” After repeating this message to several physicians and her family consistently for six
weeks, the doctors had a difficult situation on their hands. Her mother could not accept that Gina wanted to die at such a
young age and claims that Gina is suffering from depression, although two clinical psychologists have evaluated her and
would not reach a diagnosis of clinical depression.
Gina’s mother has threatened to physically fight off any doctor who tries to remove Gina’s ventilator.
What should be done?11
Mrs. Smith
Mrs. Smith is an 85-year-old resident of a nursing home. For the past three years, her mental state has been steadily
deteriorating due to a series of strokes that have finally rendered her severely demented. She is now nonambulatory, cannot
sit up in bed, and is uncommunicative most of the time. In her rare bursts of speech, Mrs. Smith is incoherent and repetitive.
She shows no signs of recognizing or remembering her family or primary caregivers. Her nurse says she appears to
experience pleasure only when her hair is combed or her back rubbed.
She is transferred to a large public hospital for treatment of pneumonia. Although she has responded well to antibiotic
treatments, she begins to have problems swallowing food. When her calorie intake declines to critical levels, her doctors
recommend insertion of a nasogastric tube. Her two involved family members, a son and daughter, consent to the tube. When
they insert *259 the tube, however, Mrs. Smith continually pulls it out and has resisted its reinsertion.
Mrs. Smith did not leave behind a living will or otherwise indicate to family members her position on life-sustaining
treatment. Her son seems convinced that she would not want the nasogastric tube inserted and, if she could presently decide,
would prefer an earlier death to being indefinitely sustained in her present state. Her daughter is less sure, but feels that
because she has not been part of her mother’s life for so long (she moved to a different city twenty years ago), she is not
qualified to assess what her mother would have wanted.
What should be done? Who should decide? 12
While these cases pose “tragic choices,” such dilemmas of modern medicine are becoming increasingly typical in the modern
hospital.13 These case studies show how death and dying decision-making spans many age groups: infants, young adults, and
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most commonly the elderly. Some suffer from curable disorders; others have no such hope. Some will experience imminent
death if not treated; others will continue in their current condition indefinitely. Some are currently competent to decide their
course of treatment; others are of questionable competency (e.g., the unconscious, infants, and the severely retarded who
arguably have never been competent). Some have private insurance; others do not. Some are supported by families who have
interests and stakes in the decision; others are essentially alone. While merely illustrative, these four cases are meant to
capture the large spectrum of hard cases in end of life decision-making. Before we can discuss how we might better handle
such cases, let us examine how these cases have been decided historically.
*260 II. The Assumption of Binary Resolution and the Shadow of Law
This section seeks to review the most important legal holdings on death and dying to understand how, in an ADR framework,
the parties would be negotiating “in the shadow of law.”14 However, this section concludes that the shadow cast by law in
this area is rather weak. While active euthanasia and physician-assisted suicide are strictly limited by the criminal law, 15 the
positions that courts have taken in other end of life treatment decisions are much less absolute and sometimes uncertain. This
is not the usual sense in which the ADR framework, which involves parties bargaining to achieve better results than that
probable if the dispute is subject to legal resolution, operates. 16 The situation is more akin to cyberspace, as discussed by
Robert Bordone, where ADR truly operates to offer an alternative to the litigation dispute resolution forum. 17 Having said
that, the shadow of law is deeper in the end of life decision-making context than in cyberspace, both because there is more
law in the area to cast a shadow and because there are not the same enforcement difficulties stemming from personal
jurisdiction and the international nature of the disputes.18
Second, this section seeks to show an underlying assumption of binary resolution, with courts opting for full-on judicial
adjudication or abdication--leaving the resolution almost entirely in the hands of families and caregivers. Professor
Menkel-Meadow has made a more generalized critique of this assumption, arguing that “there may be more than just two
sides to every story. The binary nature of the adversary system and its particular methods and tactics often may *261 thwart
some of the essential goals of any legal system.”19 In particular, Menkel-Meadow’s critique of the adversarial system focuses
on situations (1) where “facts” are extremely value-laden and different people will interpret them differently;20 and (2) where
there are more than two parties and the parties cannot be lined up comfortably on “opposite sides of the ‘v’.”21 As I indicate
below, both of these qualities characterize end of life decision-making.
A. A Brief History of Death and Dying Judicial Decisions
Following the recognition of a new constitutional emphasis on patient autonomy and self-determination in Roe v. Wade in
1973, several litigants pressed for judicial recognition of the right to die or right to refuse treatment. 22 In 1976, the New
Jersey Supreme Court heard In the Matter of Karen Quinlan, and held that a patient in a persistent vegetative state has a
privacy right to terminate life-prolonging artificial respiration.23 As important, for our purpose, is that the court delegated the
decision to the family in consultation with the patient’s attending physician and the hospital ethics committee. 24
*262 Nine years later, the New Jersey Supreme Court ruled, In the Matter of Claire Conroy, that senile patients in a nursing
home could, under appropriate circumstances, withdraw treatment even when they had a life expectancy of a year. 25 Conroy
also rejected the distinction between refusals of “ordinary” and “extraordinary” treatment (such as respirators).26 This
decision was important since many hospitals had previously allowed withdrawal of extraordinary (or “heroic”) but not
ordinary treatment. The distinction has its origin in Roman Catholic casuistry, where it was used to determine whether refusal
of treatment was classified as the sin of suicide.27
However, applying this distinction to actual cases proved notoriously difficult. Moreover, advances in medical technology
rendered a treatment that would at one time have been considered “extraordinary,” now simply “ordinary.”28 In practice, the
distinction often masked a sub-distinction about the relationship of benefits to burdens of a particular treatment. 29 So tangled
has the distinction become that most prominent bioethicists now believe that “the *263 distinction between ‘ordinary’ and
‘extraordinary’ treatment is morally irrelevant and should be replaced by the distinction between optional and obligatory
treatment, as determined by the balance of benefits and burdens to the patient.”30
While classifying a particular treatment as “ordinary” or “extraordinary” was the type of question susceptible to judicial
resolution, in the sense that it was possible to construct laundry lists classifying possible treatments in general as
“extraordinary” or “ordinary,” the more context-sensitive inquiry into benefits and burdens to the patient becomes difficult to
resolve in the adjudicatory context. For instance, consider our case study of Gina Pallone. In the pre-Conroy era, the court
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would inquire whether use of a ventilator was considered “ordinary” or “extraordinary” treatment by the prevailing norms of
the medical community, and if it concluded the latter, it would give dispositive weight to Pallone’s refusal of treatment--we
are putting aside issues of her competency for the moment. 31 In the post-Conroy setting the court has to inquire whether the
benefits of the ventilator outweigh the burdens for Gina. It is much more difficult for even a well-briefed and conscientious
court to determine whether imminent death by asphyxiation, the result of removing the ventilator, is a “benefit” to an ALS
patient unable to assert any muscle control except over her eyelids and kept alive by mechanical respiration and a gastostomy
tube. How do judges make these determinations, and in what way are they more qualified than anyone else?
At least in Gina’s case, if she is found competent, the patient’s subjective expression of wishes can be considered. The
problem becomes more acute in a case like that of Mrs. Smith where the patient cannot competently express her wishes, has
not left an advanced directive, has a family divided on what she would have wanted, and displays highly ambiguous gestures
(i.e., does her pulling out of the nasogastric tube merely signal that she finds it uncomfortable or that she actually wants to
die?). Similarly, in Baby Brisay’s case, the patient has no expressed wishes, and the court is forced to decide whether death
by starvation is a “benefit” to a child whose future promises severe mental retardation and self-mutilation and whose parents
in a very real sense do not want her. In Mary Northern’s case, given the relatively low chance of survival without surgery
(five to ten percent as opposed to fifty percent with surgery) and the high *264 likelihood of post-operative psychosis, what
does the benefit to burden ratio suggest? How much weight on the scale should Mary Northern’s claim she would “possibly”
prefer losing her feet to surgery garner, given her beliefs that her feet are merely dirty?
This re-framing of the inquiry, usually termed “quality of life,” has spawned a vast amount of literature.32 It requires courts
to make an inquiry that is highly subjective, and difficult to defend on principled grounds, an essential element of liberal
legality.33 This article does not argue that the old “ordinary” versus “extraordinary” approach was more objective;34
however, it did mask the value-laden *265 nature of the inquiry in a way that the quality of life inquiry does not. In part, it
did this by moving the decision into the realm of medical technology and jargon. When determinations were made by the
combination of “expert” doctor and “expert” judge, the subjectivity of the inquiry was less obvious; in the quality of life
inquiry each of us are, in a sense, our own “experts” and no one can claim their opinion ought to be followed because of
superior expertise. To put it in its strongest form, the quality of life inquiry threatens to expose the emperor as truly naked,
suggesting that the Crits are correct in asserting that principled legality has run out and the courts are employing “open
morality” rather than “law’s morality.”35 This, however, begs the question of why courts have the authority or the
competence to make these decisions. Thus, Conroy illustrates one of the major problems of the adjudicatory model. For the
Crits, such critiques of formal adjudication are not unique to the death and dying context; these attacks could be made on any
doctrine of law. Without attempting to pass judgment on the Crit framework more generally, it is important to emphasize that
the death and dying context seems particularly problematic in this regard because of the lack of a critical mass of
well-established law to which later decisions have to conform,36 a lack of social consensus about the right time to die,
strongly held conscious and unconscious moral beliefs on the part of judges, and a sense that no person is a better “authority”
on the subject of death than any other.
The only U.S. Supreme Court decision weighing in on the issue37 is Cruzan v. Director, Missouri Department of Health,
where the *266 court upheld a Missouri statute prohibiting the withdrawal of treatment for an incompetent patient unless
there was clear and convincing evidence that it was what the patient would have wanted. 38 On the actual facts of Cruzan,
Cruzan’s statements to a housemate “that she would not want to live should she face life as a ‘vegetable,’ and other
observations to the same effect,”39 made a year before the accident that left Cruzan in a persistent vegetative state were held
insufficient to meet the clear and convincing evidence test applied by the Supreme Court of Missouri, because “the
observations did not deal in terms with withdrawal of medical treatment or of hydration and nutrition.”40 If Quinlan evinced a
strong preference for non-judicial informal decision-making, Cruzan’s emphasis on evidentiary standards shows a strong
preference for a formal adjudicatory model. It is important to note that Cruzan merely held that a state’s statutory choice to
use a substituted judgment test and apply a clear and convincing evidence burden of persuasion was constitutional; it did not
mandate the adoption of such a standard.41
While Cruzan may have clarified the constitutional limits on restricting the right to die, it did little to establish a workable
standard for courts to use. Bioethicist John D. Arras has argued that the clear and convincing evidence test is too easily
manipulated, in that an ardently “pro-life” state like Missouri can apply the test more like a beyond a reasonable doubt
standard.42 More importantly, Arras thinks:
*267 Scornfully dismissing Nancy’s authentic voice on the ground that it did not specifically name the treatments she wished
to forego and that it merely expressed an informal reaction to other people’s medical conditions, the Missouri Supreme Court
allowed its pro-life ideology to obscure entirely the undeniable “personal element” in her case. Other courts, including the
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probate court that eventually rendered the final judgment in this case, have reached very different conclusions on the basis of
nearly identical testimony.43
While he intends it to be an indictment of the Cruzan test, Arras’s critique might be seen as a more general concern over the
adjudicatory model’s application to death and dying cases. The problem is made more difficult when we realize that Cruzan
is in some senses an easy case. Cruzan, unlike our second case study of the severely retarded infant Baby Brisay, did at one
time have expressed wishes that a court could, however imperfectly, ascertain. Moreover, Cruzan was in a persistent
vegetative state where there was no question that she lacked decision-making capacity, but in cases like that of our first case
study of Mary Northern’s “questionable competence,” the legal problems become even more intractable.44 Arras has
proposed that:
[A]bsent a personally chosen surrogate [we should] lodge decision making authority squarely with the patient’s family or a
close personal friend . . . I propose that the surrogate should control decisions on life-sustaining treatments unless and until
others (e.g., hospital administrators, health care providers, other family members) can show that such decisions would pose a
clear threat either to the previous wishes or best interests of the patient. In other words, the present burden of proof should
*268 be reversed. Instead of imposing a strict presumption of treatment requiring families to prove that they have a uniquely
correct answer to the problem, we should rather presume that families and friends know best and require others to prove them
wrong.45
However, Arras’s model is still an “adjudicatory” model; it merely reverses the burden of proof. It still suggests that the
judicial forum is the best place for resolution of such disputes. Perhaps unintentionally, this results in de facto unilateral
control over the decision by the family, since hospitals rarely have the incentive to litigate against families even if they deem
it against the patient’s wishes or best interest. Thus, Arras’s rejection of the Cruzan model implicitly leads to the binary
approach to the problem: either allow full-on adjudication in court or leave it within the private sphere of family
decision-making.
B. The Massachusetts Experience
Massachusetts is perhaps the clearest example of this binary assumption, as evidenced by the landmark case of
Superintendent of Belchertown State School v. Saikewicz. 46 Saikewicz involved a severely retarded 67 year-old with an IQ
of ten and a mental age of approximately two years and eight months. 47 Saikewicz was diagnosed with fatal leukemia and, if
left untreated, would shortly die without discomfort. Chemotherapy would extend his life, but not cure the disease, and
impose severe side effects he did not comprehend.48 The probate court ruled that no treatment be administered, 49 and the
Massachusetts Supreme Judicial Court upheld the decision.50 More important than the substantive decision in Saikewicz was
the strong preference for judicial decision-making and the set-up of a complicated procedural system to make it possible. 51
*269 Commensurate with the powers of the Probate Court already described, the probate judge may, at any step in these
proceedings, avail himself or herself of the additional advice or knowledge of any person or group. We note here that many
health care institutions have developed medical ethics committees or panels to consider many of the issues touched on here.
Consideration of the findings and advice of such groups as well as the testimony of the attending physicians and other
medical experts ordinarily would be of great assistance to a probate judge faced with such a difficult decision. We believe it
desirable for a judge to consider such views wherever available and useful to the court. We do not believe, however, that this
option should be transformed by us into a required procedure. We take a dim view of any attempt to shift the ultimate
decision-making responsibility away from the duly established courts of proper jurisdiction to any committee, panel or group,
ad hoc or permanent. Thus, we reject the approach adopted by the New Jersey Supreme Court in the Quinlan case of
entrusting the decision whether to continue artificial life support to the patient’s guardian, family, attending doctors, and
hospital ‘ethics committee.‘52
In adopting a role of “consultation but not decision-making” for family and Ethics Committees while reserving the locus of
decision-making for the courts, the Saikewicz court explicitly challenges a key assumption of Quinlan:
One rationale for such a delegation was expressed by the lower court judge in the Quinlan case, and quoted by the New
Jersey Supreme Court: “The nature, extent and duration of care by societal standards is the responsibility of a physician. The
morality and conscience of our society places this responsibility in the hands of the physician. What justification is there to
remove it from the control of the medical profession and place it in the hands of the courts?” For its part, the New Jersey
Supreme Court concluded that “a practice of applying to a court to confirm such decisions would generally be inappropriate,
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not only because that would be a gratuitous encroachment upon the medical profession’s field of competence, but because it
would be impossibly cumbersome ...
[W]e do not view the judicial resolution of this most difficult and awesome question--whether potentially life-prolonging
treatment should be withheld from a person incapable of making his own decision--as constituting a “gratuitous
encroachment” on the domain of medical expertise. Rather, such questions of life *270 and death seem to us to require the
process of detached but passionate investigation and decision that forms the ideal on which the judicial branch of government
was created. Achieving this ideal is our responsibility and that of the lower court, and is not to be entrusted to any other
group purporting to represent the “morality and conscience of our society,” no matter how highly motivated or impressively
constituted.53
While the Saikewicz court adamantly supported formal adjudication, since 1977, Massachusetts’s commitment to this
framework has been severely eroded. “This approach, heralded by civil libertarians, soon became unworkable, and
Massachusetts now uses the court procedure only in the novel situations or when then the family is in conflict.”54
More recent decisions by lower courts continue to express ambivalence about the competence and propriety of the judicial
forum to make such decisions.55 There seems to be a “general level of malaise that many of the parties in the health care
setting seem to have with courts and more formal ways of dealing with termination of treatment issues.”56
What might lie beyond the assumption of a binary choice in resolution techniques? Are there choices between the formality
of full-on litigation and the laissez faire of leaving it to private decision making? Roberto Unger in discussing contract law
suggested the contrast between Venice and Belmont in The Merchant of Venice: Belmont represents the domain of love and
family; Venice is the realm of contract where the strictest bargain will be held by courts to the letter. Unger suggests that we
reside in Venice; nevertheless, our lives are *271 made bearable by the ability to periodically retreat to Belmont. 57 The
prevailing legal discourse on death and dying has bought into this dichotomy, but the rest of this article explores the
possibility of a resting place between Venice and Belmont.
III. Towards an ADR Model
At least one author, Diane Hoffmann, has suggested the use of an ADR framework in end of life decision-making,58 although
her proposal limits itself to mediation, not the full panoply of dispute system design tools. 59 Prior to discussing what such a
model might look like, it is necessary to defend the preference for ADR in this area. Before attempting to mount a more
positive defense of ADR in this area, I defend against two threshold objections to prove that an ADR approach is even
possible.
A. Two Threshold Objections
1. There is No Room for ADR While you can “Get to Yes” and “Value Create” all you want when structuring a
merger agreement, death and dying decision-making is different; there are only two possible outcomes (discontinue
treatment or do not) and the parties are diametrically opposed to one another--there is no place for ADR here.
A threshold concern about ADR models for death and dying, which I think underlies the assumption of binary resolution
discussed in Part II, is whether death and dying disputes are the kind amenable to compromise. “Where there is only a single
issue on the table and no real alternatives, there is a question of the suitability of mediation for the dispute.”60 In other words,
invigorating conceptions of negotiation theory like “expanding the pie” and “creating *272 value”61 seem hard to apply in
this context. Similar concerns have been articulated in the issue of custody over a child upon divorce, 62 but there, as here, the
apparent starkness of the dilemma turns out to be somewhat oversimplified. Yes, there is only one child who is indivisible,
but there is a continuum of arrangements of custody and visitation rights. 63 Likewise, death and dying dilemmas often give
an illusion of a binary choice: allow the patient to refuse treatment and die, or overrule the patient and let them live, which
seem ill-suited for negotiation.64 Beneath the surface, however, is a range of options between the two positions. 65
H. Peyton Young has provided the most sustained discussion of this problem, observing that “indivisibles pose a serious
stumbling block to negotiations, because they often mislead the claimants into thinking in zero-sum terms: if one gets the
object, the other does not.”66 Although Young offers two “indivisibles” superficially similar to our own case--the bioethical
example of deciding who ought to have priority over a single kidney for transplant 67 and the socio-personal dilemma of
deciding the custody of a child68--end of life decision-making is actually quite different. This becomes evident when one tries
to apply Young’s eight methods of division (physical division, lottery, rotation, common ownership, subtraction, sale,
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compensation, and unbundling attributes)69 to the end of life context. None of the eight methods seems to work. Why the
methods are so difficult to apply is a very interesting question.
One possible explanation for this difficulty is that, unlike the examples offered by Young of Jerusalem or determining who
should get *273 a kidney, the patient is a subject, not object, to be divided; in other words, Young’s strategies work only for
“property.” But, this distinction proves too much since children too are “subjects” not “objects,” yet Young’s methods
(especially rotation, common ownership, and unbundling of attributes) seem quite applicable to custody disputes. 70 One
might reply that custody disputes still involve rights to something--a child--(even though we ordinarily do not think of it that
way) rather than the rights of someone. Whether or not this is right, a more fundamental difficulty with applying Young’s
theory is his core assumption that:
When we say that a thing is indivisible, like Jerusalem or the atmosphere, we do not mean that it cannot be divided
physically. We mean that the object loses much of its value when divided. The solution is to divide the object notionally
rather than physically by creating various kinds of rights to its use.71
In the death and dying context, if we take the object to be the patient, we have the odd situation for Young of one party
deriving value from the object by destroying the object, the other by preventing its destruction. If the preceding sentence
seems awkward, it is because Young’s framework seems ill-suited to this problem. If we try to reframe it a bit more
metaphysically, suggesting that the object is something like a right to make a decision whether to discontinue medical
treatment of person x, then we have difficulty applying any of Young’s eight strategies to this right in a way that could satisfy
the parties. Rotating the right to make the decision will not work, since if the party seeking to end treatment exercises the
right during their rotation, there will be no further rotations. Common ownership is also unworkable, because it amounts to
giving the party who opposes discontinuing treatment a veto power, the very thing the party that wants to die is seeking to
avoid. Unbundling of attributes seems the most promising of the options, but it is not at all clear how this could be
accomplished here.
*274 Even if Young’s specific suggestions seem inapposite, his general approach does teach us something important: the
perception of goods as indivisible and negotiations as zero-sum tends to occlude the parties’ ability to explore alternative
solutions.72 In end of life decision-making, many intermediate options are never explored. In our case study of Gina Pallone,
who wants to die but whose mother is unwilling to have the ventilator removed, a compromise position might be to leave the
ventilator in but institute a “do not resuscitate” (DNR) order.73 In our case study of Mrs. Smith, who pulls out her nasogastric
tube, alternatives such as a purely gastric tube could be explored.74 With handicapped newborns like Baby Brisay, the extent
of the physical and mental handicap is not always ascertainable from the beginning.75 It would often be desirable for parties
to wait until a more certain prognosis is available before deciding whether to discontinue treatment completely; however, the
adjudicatory model pushes the parties to try and achieve final resolution of treatment of the atresia or no treatment. ADR
might lead the parties to several interim measures, such as a trial period on an artificial nutrition system, until the extent of
Baby Brisay’s impairment can be more adequately mapped. 76 Our case study of Mary Northern, however, suggests a
situation where the options really do seem quite binary. A principled defense of ADR does not need to deny the existence of
these hard cases, because the ADR process is superior to court adjudication even if its choice of outcomes does remain treat
or do not treat.
In these types of cases, an ADR framework, perhaps culminating in an advisory adjudication or mini-trial, might dissuade
one party *275 from pursuing litigation.77 Moreover, as will be discussed later, it can help to allow all the parties to feel
heard and lower the emotional intensity of the litigation process.78 It is interesting to note that the range of options increases
significantly in a regime allowing physician-assisted suicide. In the controversial “suicide contract”79 practiced in the
Netherlands and (illicitly) in the United States, a doctor will promise a patient who wants to die assistance in ending his/her
life if he/she tries a promising therapy or another round of chemotherapy. In the famous Canadian Supreme Court case of
Rodriguez v. British Columbia A.G., the petitioner, a woman with a young child who suffered from Multiple Sclerosis,
sought to invalidate Canada’s prohibition on physician-assisted suicide by arguing that the law forced her to terminate her life
long before she wanted to, because eventually she would deteriorate to the point where her physical condition would not
allow her to commit suicide without assistance.80 Her claim that the law unconstitutionally discriminated against the
handicapped failed.81
Many “disputes” in the death and dying context are really “misunderstandings,” in the sense that they are not real differences
in opinion or belief as to what the correct choice of treatment ought to be. 82 As one bioethicist, who adopts a meditative
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model, has observed:
[These] conflicts were often fueled by different perceptions of the medical facts, different understandings of the prognosis,
different interpretations of patient behavior (generally relating to whether the patient was experiencing pain and suffering)
and different personal value hierarchies. As we searched for ways to help patients, family members, and staff understand the
clashing cultures and discordant assumptions that animated their arguments, we realized that the substantive parts of our
interventions were more than outweighed by the process elements. *276 Searching for the right theoretical model steered us
to the frame and the techniques of mediation.83
In Terry Schiavo’s case, part of her parents’ opposition to the removal of the tube is their interpretation of certain medical
facts; Schiavo’s parents have recorded on video their daughter appearing to smile, grunt, and moan in response to her
mother’s voice as well as follow a balloon with her eye. 84 However, the medical consensus is that persons in a persistent
vegetative state often make such gestures involuntarily, and they are not a sign of cognitive functioning. 85 This
misunderstanding of medical facts, coupled with strong emotions such as Schiavo’s parents’ need to believe their daughter
can recover and their antipathy and suspicion of their son-in-law,86 has contributed to the escalation of the Schiavo dispute.
To the extent the ADR model, in contrast to the litigation model, promotes information sharing and openness to multiple
inferences from the data, it promises to reduce the incidence of disputes.
To summarize, ADR does have a role to play even in a dispute as seemingly positional as that of the death and dying context
because it may (1) help to resolve “misunderstandings” that the adjudicatory system tends to treat as full-blown “disputes,”
(2) identify intermediate options that satisfy both parties and remove the need for rights-oriented dispute resolution, (3) offer
a lower form of rights-oriented adjudication when a dispute must be decided, and (4) offer emotional resolution lacking in the
typical litigation process. These four benefits will not accrue in every case, but they are important enough and occur often
enough to justify implementation of an ADR program that retains litigation as a final step.
2. We Want Litigation While ADR may be appropriate in private rights disputes, end of life decision-making is exactly the
type of public rights area where we want judicial determination. To the extent ADR threatens to remove these disputes from
the courtroom, it is problematic.
*277 The debate between private rights and public rights models of adjudication is ubiquitous in legal scholarship. The
debate is perhaps most visible in theories of judicial review and standing requirements. A leading Federal Courts casebook
contrasts the private rights model of the courts’ role as dispute resolver, limiting jurisdiction by doctrines of jusiticability and
standing to cases in which “a defendant’s violation of a legal duty to the plaintiff has caused a distinct and palpable injury to
an economic or other legally protected interest,”87 as opposed to a more public rights model, which argues
that the judiciary should not be viewed as a mere settler of disputes, but rather as an institution with a distinctive capacity to
declare and explicate public values - norms that transcend individual controversies . . . [and] defends the exercise by courts of
broad remedial powers in cases challenging the operation of such public institutions as schools, prisons, and mental hospitals;
it argues that relief cannot and should not be limited to undoing particular violations, but should involve judges (and their
nominees) in the management and reshaping of those institutions. 88
Both these strands have legacies as old as Marbury v. Madison, and while the Supreme Court has always vocalized more
support for the private rights model, many of its decisions (Brown v. Board of Education most prominently) evince support
for the public rights model.89
This macro-debate reproduces itself in important ways in the question of whether ADR is desirable in the end of life
decision-making context. As Part II has illustrated, the Supreme Court has only spoken once on end of life decision-making
outside of the physician-assisted suicide context, and much of the existing states’ precedents are a muddle. Increased
acceptance of patients’ right to refuse treatment has been won via court challenges, and in a more ADR-oriented world there
might not have been a Quinlan or Cruzan decision in whose shadow ADR could take place.90 While ADR is usually
considered a cost-effective and appropriate way to resolve disputes between private parties, that is not true if what matters is
the imposition of societal norms. Litigation is sometimes needed for social change and *278 national catharsis. Ury and his
colleagues give the example of Brown v. Board of Education and suggest that although a negotiated settlement to the dispute
might have had the same immediate impact for the parties, the societal impact would have been much less important. 91 Judge
Harry Edwards has cautioned:
We must consider whether the disputes that will be resolved pursuant to an ADR system will involve significant public rights
and duties. In other words, we must determine whether ADR will result in an abandonment of our constitutional system in
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which the “rule of law” is created and principally enforced by legitimate branches of government and whether rights and
duties will be delimited by those the law seeks to regulate.92
Similarly, Professor Owen Fiss has observed:
The advocates of ADR are led to support such measures and to exalt the idea of settlement more generally because they view
adjudication as a process to resolve disputes. They act as though courts arose to resolve quarrels between neighbors who had
reached an impasse and turned to a stranger for help. Courts are seen as an institutionalization of the stranger and
adjudication is viewed as the process by which the stranger exercises power. The very fact that the neighbors have turned to
someone else to resolve their dispute signifies a breakdown in their social relations; the advocates of ADR acknowledge this,
but nonetheless hope that the neighbors will be able to reach agreement before the stranger renders judgment. Settlement is
that agreement.93 . . .
In my view, however, the purpose of adjudication should be understood in broader terms. Adjudication uses public resources,
and employs not strangers chosen by the parties but public officials chosen by a process in which the public participates.
These officials, like members of the legislative and executive branches, possess a power that has been defined and conferred
by public law, not by private agreement. Their job is not to maximize the ends of private parties, nor simply to secure the
peace, but to explicate and give force to the values embodied in authoritative texts such as the Constitution and statutes: to
interpret those values and to bring reality into accord with them. This duty is not discharged when the parties settle. 94
*279 Edwards views as part of the problem this article’s earlier suggestion that many disputes in the end of life context are
really misunderstandings:95
A subtle variation on this problem of private application of public standards is the acceptance by many ADR advocates of the
“broken-telephone” theory of dispute resolution that suggests that disputes are simply “failures to communicate” and will
therefore yield to “repair service by the expert ‘facilitator’. . .
This result is praiseworthy--mutual understanding and good feeling among disputants obviously facilitates intelligent dispute
resolution--but there are some disputes that cannot be resolved simply by mutual agreement and good faith. It is a fact of
political life that many disputes reflect sharply contrasting views about fundamental public values that can never be
eliminated by techniques that encourage disputants to “understand” each other. Indeed, many disputants understand their
opponents all too well. Those who view tobacco as an unacceptable health risk, for example, can never fully reconcile their
differences with the tobacco industry, and we should not assume otherwise. One essential function of law is to reflect the
public resolution of such irreconcilable differences; lawmakers are forced to choose among these differing visions of the
public good. A potential danger of ADR is that disputants who seek only understanding and reconciliation may treat as
irrelevant the choices made by our lawmakers and may, as a result, ignore public values reflected in rules of law.96
In this context, the Fiss/Edwards argument would be that end of life decision-making is at the core of public rights, and
acquiescence to ADR’s tendency to steer these disputes away from the court represents a judicial shirking of responsibility.
What might be said in response to this very strong criticism?
First, the type of ADR model this article proposes always retains recourse to the court at any time prior to resolution and
again when all ADR mechanisms have been exhausted. To use one of Edwards’ own distinctions, ADR becomes more of an
“adjunct” to traditional court dispute resolution, not an “alternative” system.97 The voluntary nature of participation greatly
distinguishes this proposal from the federal and state court annexed arbitration that is Edwards’ *280 main target.98 Edwards
supports ADR, noting that “there are some disputes in which community values--coupled with the rule of law--may be a rich
source of justice,” specifically mentioning “disputes between parents and schools about special education programs for
handicapped children” where what is at issue is the “appropriate education for a child, a matter best resolved by parents and
educators--not courts.”99 Education of children is a particularly compelling comparison, because Meyer v. Nebraska 100 and
Pierce v. Society of Sisters,101 the cases establishing a substantive due process right in choosing the education of one’s child
that has survived the repudiation of Lochner,102 undergird much of the Supreme Court’s jurisprudence on the right to die. 103
We might argue that appropriate end of life decision-making is likewise a matter best resolved by doctors, patients, and their
families, not courts.104 Consonant with what we have said before, Judge Edwards emphasizes that “the option of ultimate
resort to adjudication is essential. It is only because handicapped children have a statutory right to education that
parent-school mediation is successful.”105
A second response to the objection is to suggest that the status quo regime has not lived up to its promise, in that courts have
not filled the gaps in existing law enabling a robust public rights regime. 106 Quite the contrary, the Supreme Court has only
spoken *281 once on the issue and most lower courts have expressed strong reluctance to decide these issues.107 It is
conceivable that an ADR scheme might actually produce better public rights adjudication by courts, both by defining and
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culling the issues before litigation, and by involving “expert” decision-makers, including bioethicists, ethics committees, or
members of the community, depending on the form a particular ADR program takes, as advisors to the court. To be fair, it is
difficult to be sure that the empirical result will be better public rights adjudication, but the more important point is that for
whatever reason, courts have already shirked their public rights model duties regarding end of life decision-making, and
without ADR private decision-making with even less due process protection for the vulnerable patient will occupy the field.
Furthermore, ADR can offer some norm-articulation. In Gilmer v. Interestate/Johnson Lane Corp., a discharged employee
challenged an agreement to arbitrate Age Discrimination in Employment (“ADEA”) claims on the grounds that the arbitral
forum was inadequate to further the important social policies of the ADEA. 108 The court responded that although it was
different from a judicial forum, arbitration was no less adequate in “further[ing] broad social policies,” and noted the use of
arbitration in antitrust, securities, and RICO violations.109
A third response is that even if courts want to exercise their public rights functions, the very fact-based nature of these
disputes inhibits them from doing so. Think of the four case studies and the difficulty a court would have in articulating a rule
to cover more than two of them. Gross rules like “patients should never (or always) be able to discontinue treatment when
they want” are too simplistic and will generate results we think of as intuitively unfair. More precise *282 rules like
“competent patients should always be able to refuse treatment” or “parents should be able to discontinue treatment of a
severely retarded infant” are question-begging since they require further inquiries into what counts as competency and
“severely retarded” (Lesch-Nyhan? Tay-Sachs? Down’s Syndrome? Down’s Syndrome only below a certain IQ level? IQ of
70? 50? 30?). In this respect, the Supreme Court’s one flirtation with the public rights model, Cruzan, can be seen as a failure
if we consider the amount of confusion and uncertainty in which it has left lower courts.110 End of life court adjudications are
almost necessarily limited to their facts, and because any attempt to develop a principle-oriented body of precedent will be
very difficult, cases will often be decided as if they were matters of first impression. 111
Related to this is a doubt as to the ability of the adjudicatory model to offer consistency. While the adjudicatory model favors
consistency of process and predictability of cases, the ADR model recognizes that cases need to be decided in a contextual
way that might not be easily generalized to other cases. This might seem like a trade-off between two values that are
ubiquitous in private law, predictability versus flexibility, rules versus standards.112 However, there are good reasons to
doubt whether courts can deliver on their promise of predictable results in the death and dying context. Our earlier discussion
of Cruzan showed how subjective the application of the clear and convincing evidence test was to statements made by the
formerly competent Cruzan, with the probate court reversing itself when given only slightly more evidence.113 As we will
see shortly, application of a concept like competence is even more treacherous. It is exactly the uncertainty of the
adjudicative model that has caused many authors to advocate advance directives--including living wills, specifying treatment
or nontreatment in particular situations, and durable power of attorney, empowering a surrogate to decide for the
now-incompetent patient--as a way of enhancing patient autonomy by *283 achieving predictable results as to how an
incompetent patient will be treated.114 However, despite attempts by doctors to increase the use of advanced directives in the
last twenty-five years, a very small percentage of the American public have actually prepared one. 115 Although it is true that
some death and dying conflicts surround interpretation of an ambiguous advance directive, most of the cases result from the
absence of advance directives.116 Thus, the litigation route promises a high degree of uncertainty.
B. A Positive Argument for ADR in End of Life Decision-making
Nancy Dubler, a prominent ethicist has remarked:
Like most medical ethicists, I believe that the courts are not, by and large, the place for medical-care dilemmas to be settled.
They are impersonal and far removed from patients’ and families’ private values. With so many eyes watching they may
respond to personal and political interests other than the patients’. They are not geared to deal with the issues of medical care,
procedure, and prognosis, the subtleties of how life actually works in a hospital. For all these reasons, courts are not places to
entrust your most important health-care decisions if you can possibly avoid it.117
While on the whole, Dubler’s conclusions seem right, in justifying an ADR approach, it is helpful to flesh out and critically
scrutinize why an ADR approach may be better than an adjudicatory one in this *284 context. There are six principle benefits
to ADR: (1) its promise of speedier resolution, (2) its reduction in lumping, (3) its ability to confront the value-laden nature
of the decision, (4) its increasing of patient autonomy, (5) its ability to enable emotional resolution, and (6) its flexibility in
managing multiple parties.
1. Court Adjudication is Too Slow
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Court adjudication is often a long, drawn out process, involving multiple appeals. Often, death and dying decisions need to be
made in a much shorter period of time, and delay is de facto acceptance of one option. Consider, for example, the issue of
Mary Northern’s amputation. Surgery will only be possible inside a short window of time. Another example is Baby Brisay’s
duodenal atresia: if the condition is not corrected, she will starve to death in a matter of days. If the doctors do proceed with
the operation, any decision to discontinue her life has now been taken off the table, since most states criminalize
physician-assisted suicide and all criminalize involuntary active euthanasia.118 While a preliminary injunction in such
circumstances would be difficult, but not impossible, it is very difficult to think that the parties could achieve any finality in
judgment (i.e., exhaust appellate review) in such a short time frame. Therefore, one aspect of “fitting the form to the fuss” in
end of life decision-making is timely resolution. Depending on the system design, an ADR system seems better poised to
accomplish this, especially if its more formal stages utilize “in-house” players like the hospital’s ethics committee. This is
embodied in Principle 8 of the “Due Process Protocol for the Resolution of Health Care Disputes” drawn up by the Joint
National Commission on Health Care Alternative Dispute Resolution:
Principle 8: Reasonable Time Limits: ADR proceedings should occur within a reasonable time, and without undue delay. The
rules governing ADR should establish specific reasonable time periods for each step in the ADR process and, where
necessary, set forth default procedures in the event a party fails to participate in the process after reasonable notice. The
commission recommends the following general timeframes for resolving disputes: acute emergencies--24 hours;
emergencies--72 hours; non-emergencies 60 days.119
*285 That said, the advantage in expediting decisions in emergency cases will be muted by the built-in recourse to judicial
resolution that this article argues is essential for the model. Still, the flexibility of an ADR system that can skip steps in
emergency situations is a major advantage-- although possibly also a threat to due process.
2. ADR Lowers the Transaction Costs for Participants and May Reduce Lumping
ADR stands for “alternative dispute resolution,” and is usually thought of as being an alternative to the litigation route, but in
the end of life decision-making context there is reason to think the predominant dispute resolution mechanism is something
quite different: “lumping it.” Ury and his colleagues introduced this concept in the context of grievances by union members
in the mining industries:
Not all disputes end with a resolution. Often one or more parties simply decide to withdraw from the dispute. One party may
decide to “lump it,” dropping her claim or giving in to the other’s claim because she believes pursuing the dispute is not in
her interest, or because she concludes she does not have the power to resolve it to her satisfaction. . . . Lumping it may occur
in conjunction with particular dispute resolution procedures. Lumping it may also occur before a claim has been made, thus
forestalling a dispute.120
In this context, lumping may occur on both sides. In the face of strong family opposition to a patient’s end of life treatment,
the hospital has an incentive to back down and not open itself up to liability. Faced with the authority of doctors who speak in
jargon, and the uncertainty of the legal regime in the background, families have an incentive to lump it even when they
themselves believe a different course of action is advised. Exactly how much lumping occurs in this area? No empirical study
has been done, although the anecdotal accounts of knowledgeable academics and clinical bioethicists seem to suggest it is
significant.121 If lumping behavior really is significant *286 in the current regime, then even those who would ideally want
full adjudication might support ADR as a more realistic “next best thing.” High amounts of lumping are characteristic of a
system in distress.122 Typically, hospital ADR models do not charge the patients anything, so ADR may represent a lower
transaction cost method of pursuing one’s rights when litigation might be a deterrent. 123 The goal of dispute system design is
to sequence low-cost dispute resolution methods before high cost ones.124
It is reasonable to wonder how hospitals might fund such an ADR program. One promising answer comes from evidence that
hospitals that have instituted ADR for malpractice have found that the *287 program’s cost has actually reduced their bottom
line, saving the expense of trial in a number of cases.125
3. ADR Accepts Rather Than Masks the Value-Laden Nature of the Inquiry
A deep argument suggests that the disputes most likely to occur in end of life decision-making are not the kind that can be
decided “correctly” by an idealized adjudicatory model, in the sense that they are not law, fact, or fact applied to law, but
rather value-laden.126 Menkel-Meadow identifies disputes where the facts are inherently *288 value-laden as particularly ripe
for ADR rather than adjudicatory resolution.127 Although there is a strong strand of rights orientation in most ADR
frameworks, for instance Fisher and Ury’s focus on legitimacy and objective criteria in “Getting to Yes,”128 there is also a
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prominent strand recognizing that attempts at reconciling interests are sometimes more important than determining who is
“right.”129 For courts there is a need to maintain the “noble lie” that legal positions are correct or incorrect, but in end of life
decision-making, this fiction is particularly thin.
Nowhere is this more evident than in the issue of competency and consent. 130 A review of the literature suggests a multitude
of possible standards to determine whether a patient is competent to consent to treatment. 131 Even the most lax and simple
standard, whether the patient “manifests his consent” or “evidences a choice” poses problems.132 In our case study of Gina
Pallone, does her eye blinks to the effect of “I want to die” count as consent? In our case study of Mrs. Smith, does her
pulling out of the nasogastic tube constitute refusal of treatment? 133
The case for the adjudicatory model becomes even less compelling when we add in the complications of competency. Our
case study of Mary Northern faces this question head-on: is Mary Northern capable of refusing the amputation of her legs?
This article purposefully poses the question in terms of “capacity” and not “competence,” because the more modern
nomenclature of capacity recognizes that the inquiry is task-specific (e.g., you could have capacity to consent to *289 one
treatment but not another), not an all-or-nothing proposition like being competent or incompetent but rather admitting of
degrees, which may vary over time.134 Unfortunately, this nuance is sometimes lost on courts. “The law has traditionally
presumed that a person who is incompetent to manage his or her estate is also incompetent to vote, make medical decisions,
get married, and the like . . . Their global sweep, based on a total judgment of the person, has at times been carried too
far.”135
Here are some of the common standards for determining lack of capacity to consent to treatment, ordered from least to most
“demanding”:
• Inability to express or communicate a preference or choice.
• Inability to understand one’s situation and its consequences.
• Inability to understand relevant information.
• Inability to give a reason.
• Inability to give a rational reason (although some supporting reasons may be given).
• Inability to give risk/benefit related reasons (although some rational supporting reasons may be given).
• Inability to reach a reasonable decision (as judged, for example, by a reasonable person standard). 136
Even assuming a court had a principled way of choosing between these standards (say, the legislature mandated by statute
that one of the above was the test for capacity to refuse treatment in a jurisdiction), adding content to the tests is a daunting
task.137 This problem *290 becomes apparent when we return to our case study of Mary Northern: it is difficult to determine
which of the above standards she meets and fails. How can we argue about that using principled argument in the voice of
law? Perkins notes that despite the reliance on cognitive and other mental assessment tools, the mere presence of even a
severe mental disorder, such as Northern’s psychotic beliefs about her feet being merely dirty, does not automatically mean
incapacity to make medical decisions.138 How does one operationalize any of these standards, not merely as a global
assessment, but as an assessment specific to each and every possible task? 139 Many hospitals use dementia rating scales,
mental status exams, and other tests to determine time-and-place orientation, perseverance, memory, understanding, and
coherence.140 But:
Although empirical, a normative judgment underlies the empirical test. Each of the following ingredients involves normative
judgments.
i. Establishing the relevant abilities for (in)competence
ii. Fixing a threshold level of the abilities in item i
iii. Accepting an empirical test for item ii
For any test accepted under item iii, it is an empirical matter whether someone possesses the requisite level of abilities, but
this question can only be asked and answered if other criteria have already been fixed under items i and ii.141
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Likewise, as Kennedy has suggested:
The problem with the notion of capacity in [the more typical] setting is not that it’s positively wrong--just that it doesn’t help.
The strategy is to divide the decision into two parts, hoping that will make it easier than if the question whether to act is
treated as a single whole. First, we try to decide whether the other possesses a trait or quality called “ability to determine her
own best interests.” If she does, we accede to her wishes even if in that *291 particular case we are convinced that her action
is not in her best interests. If it were truly easier to decide the presence or absence of the quality of capacity than to decide on
balance whether we should intervene, treating that question all together, then capacity would be useful. But the question of
capacity is hopelessly intertwined with the question of what the other wants to do in this particular case.
First, there is no such “thing” as capacity, and there can be no such thing as its “absence” either. We ask the question of
capacity already oriented to the further question whether we will have to let the person do something injurious to herself.
There is no other reason to ask the question . . . [Better to have] frankly admitted at the beginning that it’s just a big mess,
with no principled way to find your way through.142
Competency determinations by courts become particularly problematic in the field of death and dying because they require
adjudication of “the rationality of suicide.” How should the court take into account high rates of depression among those with
life-threatening illness?143 Even if a patient shows signs of depression, as Gina in our case study arguably did, does that
mean their wishes should not be respected? There is a well-known finding of “depressive realism,” that depressed patients
have an assessment of the world out of step with non-depressives, but in fact the assessments of depressives may be more
accurate.144 Some psychiatrists caution that although the intention to end one’s life can be a symptom of mental illness, it can
also be rational response for severely ill patients.145 However, courts seem ill-suited to make these kinds of
determinations.146
*292 Even if we will not go as far as Kennedy, the difficulties in adjudicating decision-making competence are legion. It is
not clear courts are competent to make these kinds of combination medical, sociological, and moral decisions. But what
reason is there to think that an ADR approach will fare better? That is, even if we accept the negative thesis that adjudication
by courts of competency issues is highly problematic, is there a positive value added by the ADR approach?
One answer is that, relieved of the burden of coming to a principled/empirical decision of a moral issue, ADR can focus not
on a function of determining whether capacity exists but rather on an enabling function. Such an approach takes as its starting
point the notion that “[c]ompetence or incompetence is not simply an intrinsic feature of patients, but rather is determined, at
least partially, by social factors.”147 It is a social construct not only in the sense that society determines its criteria and
operationalizes its tests based on dominant moral and sociopolitical values, but also in the more important sense that “society
also has the power to provide or withhold particular means and opportunities that may be necessary to meet the standard(s) of
competence it sets.”148 Bioethicist Barbara Secker specifically argues that stereotypical views of women, and the increased
likelihood of poverty among elderly women, combine to render them much more likely to be deemed incompetent, when
really they lack the resources to make “good choices.”149 It is possible to “enable” competency in the sense that
improving conditions for decision-making involves reducing emotional pressure and improving the patient’s competence by
allowing him or her to make choices in areas where he or she already feels more confident. Having supportive family present
will be the norm in many ethnic groups and desirable for most people as a family presence will generally increase the
patient’s feelings of safety.150
Dubler tells the story of a 21-year-old patient named Debbie, suffering from lupus, who refused dialysis and blood
transfusion for a *293 related kidney disease on the grounds that she feared contracting AIDS from the transfusion,
notwithstanding the fact that foregoing care would likely end her (otherwise fairly healthy) life.151 Several members of the
team concluded from her decision that Debbie must be incompetent and discussed seeking a court order, until a second-year
intern spoke up:
He pointed out that Debbie was a generalized clinic patient with no private doctor. That meant no one care provider had
earned her trust, had connected with her sufficiently to help alleviate her fears. “Maybe the question isn’t her competence, but
ours.” He smiled. “Maybe we haven’t provided the right support.”
He was right. As so often happens, a refusal of care may reflect poor communication or lack of a trusting relationship rather
than a real desire to refuse. To frame this as an issue of capacity--where we would make an on-off decision about Debbie’s
ability to decide--was precisely the wrong step, the sort of thing that happens in hospitals all the time. These questions would
become the first steps in a process of ignoring her wishes and subjugating this strong-willed young woman.
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Seeing Debbie only as a case of “impaired” decisional capacity was to create a smoke screen that obscured what was really
happening--or more to the point, what wasn’t happening, no one had stepped in to create a strong doctor-patient bond.
Disempowering Debbie would have been the wrong thing for her and for her doctors. It could easily have broken her will and
undercut later attempts to engage her in the fight to conquer her disease. 152
Instead Debbie was assigned a consistent nurse and doctor team with whom she could establish a rapport, with the
understanding that if she still refused, the team would reconsider the situation. 153
4. Autonomy and Self-Actualization for the Patient
The need to empower patients goes further than merely competency determinations. Dying is an extremely difficult process.
That sentence sounds trite but belies a key assumption of the legal medical discourse on end of life decision-making: that
emotions are something to be “managed” in coming to a rights oriented adjudication, that they are merely “noise.” The
medicalization of death has a tendency to exacerbate this problem, alienating the person from both themselves *294 and their
social unit.154 There are many accounts of this phenomenon, but let us borrow just one narrative excerpted from Arthur W.
Frank’s, At The Will Of The Body, in a chapter entitled, “The Body as Territory and as Wonder.” It involves a patient who
undergoes a routine ultrasound:
After the ultrasound a physician said, “this will have to be investigated.” Hearing the phrase, I was both relieved and
offended. The relief was that someone was assuming part of the burden of worrying about what was happening to me. But I
was also offended by his language, which made my body into medicine’s field of investigation. “I” had become medicine’s
“this.” The physician did not even say, “We’ll have to find out what’s wrong with you,” which would have been a team of
real people (“we”) speaking to another person (“you”) . . .
I, my body, became the passive object of this necessity, the investigation. I could imagine how native people felt when
European explorers arrived on their shores, planted a flag, and claimed their land on behalf of a foreign monarch who would
bring civilization to the savages. To get medicine’s help, I had to cede the territory of my body to the investigation of doctors
who were as yet anonymous. I had to be colonized . . . [The patient is misdiagnosed with lymphoma, then correctly diagnosed
with seminoma].
This colonization only became worse. During chemotherapy a nurse, speaking to [another nurse named] Cathie, referred to
me as “the seminoma in 53” (my room number). By then the diagnosis was correct, but it had crowded out my name entirely.
The hospital had created its own version of my identity. I became the disease, the passive object of investigation and later of
treatment. Nameless, how could I be the person who experiences?
The ill person actively tries to make sense of what is happening in her body. She tries to maintain a relationship between
what is happening to her body and what is going on in the rest of her life. When a person becomes a patient, physicians take
over her body, and their understanding of the body separates it from the rest of her life . . .
What did I, as patient, want from physicians and the medical staff? I did not expect to become friends with them. In the
hospital I had such fleeting contact with so many specialists, and nurses appeared to rotate through shifts so rapidly, that
exchanging anything more than conventional pleasantries would *295 have been artificial. The relationship of patient to staff
is peculiar, unlike any other. We discussed intimate matters but this talk did not make us close. . . .
Relationships between patients and medical staff, whether physicians or nurses, involve people who are intimate with each
other but rarely become intimates of each other. For a truly intimate relationship people need a sharing of time, and personal
history and a recognition of each other’s differences. Medical intimacy categorizes rather than recognizes, and it is
one-sided.155
If developing a terminal illness provokes this feeling of helplessness and being made into a thing, legal regimes often
exacerbate it. Recall that Arras made this critique of the court’s handling of the Cruzan case. 156 While we would think that
the exercise of one’s rights via litigation should be self-actualizing, it perpetuates the colonization. The patient is again forced
to rely on a powerful expert, the lawyer, to give her control over her own body. In cases where competency is at issue, this
experience is even more alienating as the person becomes a thing to be assessed and decided upon.
By contrast, ADR can give patients an active role in the process as participants. As Dubler has suggested:
The fact that patients who are capable of making medical decisions are free to consent to or refuse care, or that the proxy of
an incapacitated patient is empowered to decide, is [sic] critical legal right that frame the process. But the fact that the
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outcome might be assumed or intuited at the outset does not abrogate the need for the process, or dictate the particular
configuration of any individual solution. Preexisting notions of appropriate outcome are only part of the final resolution
because of the massive ambiguity and uncertainty that surround many care situations and effectively preclude judgment
before some meditative intervention. In sum, the process of mediating or addressing conflict provides the opportunity for
staff, patient and family members to vent their fears, articulate their concerns and share their sorrows--all steps in reaching a
principled solution.157
This is part of a larger movement, sometimes called “therapeutic jurisprudence,” which originated in mental health law on the
psychological consequences of civil commitment hearings, effects of incompetent labeling, and standards used to evaluate a
juvenile’s *296 competence to stand criminal trial.158 Therapeutic jurisprudence views:
legal rules, legal procedures, and the roles of legal actors (such as lawyers and judges) [as] social forces that . . . often
produce therapeutic or antitherapeutic consequences. Therapeutic jurisprudence calls for the study of these consequences . . .
in order to identify them and to ascertain whether the law’s antitherapeutic effects can be reduced, and its therapeutic effects
enhanced, without subordinating due process and other justice values. 159
Earlier, this article suggested that ADR can have a therapeutic effect by enabling a patient, whom a court might otherwise
determine to be incompetent and stripped of any decision-making power, to be a participant, thereby recasting a disabling and
anti-therapeutic dispute resolution process into an enabling and therapeutic one. 160 Already some researchers are finding
empirical support for the health benefits of this approach. Lavery and his colleagues found that major determinants of the
desire for death and physician-assisted suicide in end stage HIV patients were the loss of self and the loss of community
support, particularly in the family unit.161 Suicide has often been connected to anxiety and depression connected to feelings
of helplessness, vulnerability, and dependency.162 To the extent that a declaration of incompetence given judicial imprimatur
via the adjudicatory model furthers this sense of powerlessness and is likely to strain family relations, adjudication may
exacerbate the causes of a patient’s desire to refuse life-saving treatment and prompt her to attempt suicide or otherwise
hasten her death.163
*297 5. Resolution of Legal and Ethical Issues are Insufficient When There is a Need for Emotional Settlement
This critique encompasses both a “value-added” component of ADR, the promise for emotional settlement, and a deficiency
of the adjudicatory model, lack of compliance with a legal mandate, and the threat of powerful losers.
a) Powerful Losers in the Adjudicatory Model
Although adjudication can produce an injunction that theoretically has all the coercive power of the judicial system
supporting it, in some contexts that may not be enough. Menkel-Meadow has developed this theme in her work:
In the civil arena, where I have focused my work, we must consider the cases that do not lend themselves easily to right or
wrong answers or to more binary solutions. Often, third-party-imposed solutions, such as those imposed by courts, do not
deal with causes underlying ongoing conflicts or disputes, especially if personal or relationship issues are at stake--this
includes commercial as well as civil rights matters. Third-party-imposed solutions, therefore, may not endure. The courts, to
their credit, have realized this, though not without a vast out-pouring of scholarship and criticism of the difficult road courts
take when they attempt to order more complex remedial measures. Most recently, courts have supervised other kinds of
dispute resolution, particularly in class action settlements of consumer and antitrust cases and mass torts. We must look for
ways to preserve limited funds so that they are fairly distributed to all deserving claimants as well as look for opportunities in
which people may desire things other than, or in addition to, monetary relief. Greater possibilities of remedy and more
creative “remedial” imaginations should thus affect the choices we make about what processes to use. Adversarialism may
greatly restrict what can be accomplished.164
*298 The concern about powerful losers is usually couched in terms of threats to an ongoing relationship and the cost to
future relationships,165 but this issue seems less of a problem in the end of life context, where at first glance, almost by
definition, there is no “future” relationship. That is not the case for two reasons: (1) The dispute will not be limited to a single
iteration in situations where the negotiated/mediated outcome is not to end treatment. Recall our second case study of the
Brisay parents and their severely retarded child. If the hospital pursues and attains a court order to require surgery to correct
the duodenal atresia, it is quite possible that other complications down the road will require further surgical interventions.
Because the first operation was the result of a rights-based adjudication as opposed to a more interest-based resolution, the
next dispute’s resolution risks being even more strained and will probably once again require recourse to a court. An even
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more dramatic example is Terry Schiavo’s case, where even after Flordia’s highest court denied review on the order allowing
removal of the feeding tube, Schiavo’s parents and certain special interest groups were able to push the Governor and the
legislator to pass legislation superseding the court’s order; 166 (2) Even in the context of a single-iteration encounter there is
reason to think that a court adjudication may suffer from noncompliance. 167 In our first case study of Mary Northern, it is
unlikely that even if the hospital received a court order allowing them to amputate her legs, they would be able to find a
doctor willing to do so against her protestations.168 Thus, satisfaction with the resolution of the dispute is not *299 only
desirable, but essential, and purely adjudicatory resolution does not always furnish it.
b) Emotional Settlement as Value-Added
Underlying almost every negotiation is a “Feelings Conversation,”169 all the more so when the subject is something as
personal as the end of your life or that of a loved one.170 The adjudicatory process attempts to frame feelings out of the
dispute:171 adjudication is an application of legal principles to facts, a combination of syllogistic and analogic reasoning. The
intentions of the parties matter in determining the culpability for murder or the existence of a breach of contract, but only in a
limited way, and normally what does not matter are the underlying emotions. 172 However, in some disputes, this approach
will be problematic.
The problem is that when feelings are at the heart of what’s going on, they are the business at hand and ignoring them is
nearly impossible. Framing the feelings out of the conversation *300 is likely to result in outcomes that are unsatisfying for
both people. The real problem is not dealt with, and further, emotions have an uncanny knack for finding their way back into
the conversation, usually in not very helpful ways.173
ADR presents an opportunity to do better.174 A leading book on difficult conversations urges disputants to engage in an
emotional two-step: identifying the emotions they are experiencing and negotiating with them.175 To give an example of how
this might work in practice, consider our case study of Gina Pallone. Part of the conflict arises from Gina’s expression of her
desire to end her life, and her mother’s obstinate refusal to accept that as legitimate, 176 since she instead suggests that her
daughter’s decision is the result of depression, despite the findings of two clinical psychologists to the contrary. An ADR
framework might begin by encouraging both parties to explore their “emotional footprint,” a list of the emotions they feel
easily and those that they find it much more difficult to feel. 177 Before becoming ill, Gina was a successful strong
professional woman, and her disease has immobilized her so much that she needs to rely on other people to breathe, eat, and
even speak. She is very likely coping with emotions such as “helplessness,” “vulnerability,” and “dependency,” emotions that
many of us have difficulty expressing. Her mother’s inability to accept Gina’s desire to die, and her dramatic threat to
physically oppose anyone who tries to remove Gina’s tubes, may reflect her feeling a fear of abandonment at the risk of her
daughter leaving her, sadness or injustice at the thought that a mother will outlive her child, and anger and disappointment at
her daughter’s refusal to fight. Gina’s mother may also feel ashamed at feeling these things regarding her daughter--“I am not
the one with ALS, unable to even breathe, and yet here I am blaming Gina”--so she may try to *301 repress these feelings.
This pattern of repression of “bad” or “inappropriate” emotions is common if ultimately self-defeating. As Douglas Stone and
his colleagues observe:
[An] assumption many of us incorporate into our footprint is the assumption that there are certain emotions “good people”
should never feel: good people don’t get angry at people they love, they don’t cry, they don’t fail, and they are never a
burden. If you are a good person, we’ve got good news: everyone feels anger, everyone experiences the urge to cry, everyone
fails, and everyone needs other people.
You won’t always be happy with what you’re feeling. For example, you assume you should feel sad at your brother’s funeral
but find instead that you feel only rage. You know you should be excited about finally getting your dream job, but instead
you’re unmotivated and weepy. Whether or not it makes sense, you are. And while it might be more pleasant to have only
good feelings toward your mother, there will be times when you feel irritated or resentful or ashamed. We all experience such
conflict, and it has nothing to do with whether or not we are a good person.
There are times when denying feelings serves a deeper psychological function: in the face of overwhelming anxiety, fear,
loss, or trauma, removing yourself from your feelings can help you cope with daily life . . . At the same time, the reality is
that unacknowledged feelings are going to have an effect on communication. All things being equal, it is better to strive
toward an understanding of your feelings . . . 178
Far from being peripheral to the dispute about whether Gina Pallone should be able to terminate her life support, these
emotions are the dispute. The adjudicatory model would focus on applying a standard of competency, 179 a standard to
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determine what counts as expressed communications, and perhaps a best interests analysis. It misses the possibility that all
parties agree that if ending treatment was what Gina really wanted, that would be the right course of action, but that the
conflict might involve questions such as whether Gina’s unexpressed emotions of helplessness and vulnerability are causing
her to attempt to end her life to achieve some control, and whether her mother’s unexpressed fears and anger are making her
unable to believe that this is “the real” Gina who wants to die. These *302 hidden emotions have a tendency to block out
other emotions;180 perhaps the anger and resentment Gina’s mother is feeling towards her is blocking the love and affection
they feel in the relationship--powerful tools to resolve their conflict.
After engaging in this first step of finding the emotions at play within the conflict, a second step is to “negotiate with your
emotions.” “What does it mean to negotiate with our feelings? Fundamentally, it involves a recognition that our feelings are
formed in response to our thoughts.”181 The first part of this is reexamining “our story”--how does the story we tell ourselves
give rise to how we are feeling, what is missing in our story, what elements of the other person’s story are we blind to? 182
Gina’s mother might recognize that an unexpressed part of her story is her fear that Gina is abandoning her, and that in order
to escape the cognitive dissonance of the conflict between “Gina is my loving daughter” and “Gina is the one who is willing
to abandon me,” she has attributed it to Gina’s depression, not to “the real Gina.”183 However, if she can recognize that she
has not heard the part of Gina’s story about hating feeling helpless and desiring to maintain her dignity, she will be better
able to reconcile Gina’s desire to die with the loving nature of their relationship. By taking a “learning stance,” both of them
can explore their assumptions about the other person’s intentions.184 A bioethical mediator can help make the “feelings
negotiation” go better by training/helping the parties to describe rather than vent their feelings, forefront their feelings when
they are a central part of the problem, encourage the parties to examine the full range of emotions they are feeling including
the one’s *303 under-expressed in the emotional footprint, and helping the parties to share emotions without attributing or
judging.185
Often, what participants want is to feel heard and acknowledged. 186 The adjudicative process can offer one form of
acknowledgement: parties to a dispute can testify and employ a lawyer to argue on their behalf. But, as a form of achieving
acknowledgement, this pales in comparison with what ADR can offer: it is one-way acknowledgement, not from the
opposing party whom one most wants to validate one’s feelings, but from an aloof third party who watches with a detached
observer’s eye. What the judicial forum offers is “vindication” not “acknowledgement.”187 In so doing, however, it does not
allow the parties to feel listened to by each other, so even if both parties feel acknowledged by the judge, it is two unilateral
systems of acknowledgment rather than a single reciprocal one.
More importantly, the very ideals of the legal system we discussed above 188--its ratio-centrism and its attempt to derive
results from application of precedential rules to novel fact situations--offers the wrong kind of acknowledgment. A judge may
tell the parties that, employing the legal standard of that state, Gina is not legally competent to make end of life decisions
(vindicating her mother), but he will never tell her mother that her feelings of abandonment were natural, that her guilt over
her desire to keep Gina around when she wanted to die is understandable, or that Gina’s desire to die has everything to do
with a need to retain her dignity and nothing to do with a lack of love for or rejection of her mother. This is not to say that
adjudication cannot be a cathartic experience; the whole point of the therapeutic jurisprudence model is that when rightly
organized, it can be such an experience, but adjudication has a hard time offering the parties a chance at emotional
reconciliation and cannot resolve the conflict in the “feelings conversation” by pronouncing like an all-seeing eye of heaven
“you were right.”
Even when adjudication can offer this deeper sense of acknowledgement, it comes at such a high cost, both monetarily and
personally, especially in terms of the significant damage recourse that litigation can wreak on an ongoing relationship. Even
when court *304 litigation is “successful,” it may leave the family unit in emotional upheaval. As the physician in a case at
Johns Hopkins Hospital with facts similar to our Baby Brisay case study observed:
I think one of the great difficulties, and I hope [this] will be part of the discussion relative to this child, is what happens in a
family where a court order is used as the means of correcting a congenital abnormality. Does that child ever really become an
accepted member of the family? And what about all of the feelings, particularly guilt and coercion feelings that the parents
must have following that type of extraordinary force that’s brought to bear upon them for making them accept a child that
they did not wish to have?189
We might also find elements of this emotion conversation in our other case studies. In Mrs. Smith’s case, there are probably
unresolved issues between her children as to their respective roles in her life. Her son may feel threatened by the reemergence
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of his sister, who has shirked her filial responsibilities but now presumptuously reemerges and expects to have an equal say
in the decision. Her daughter may feel guilty for her absence and illegitimate in asserting what she knows to be what her
mother wanted in the face of her brother’s strong feelings to the contrary.
Often overlooked in these disputes are the emotional needs and conflicts of the physician and other hospital staff. These
conflicts are truly protean: sometimes it is a conflict between doctor and patient, sometimes the configuration is doctor and
patient’s family versus patient, sometimes the conflict is between members of the health care team. Leonard Marcus, a
pioneer in bringing the negotiation framework to the health care setting has observed:
Placed together, cost, obsession, purpose, entanglement, and the pursuit of victory evoke strong emotions [in health care
workers]: anger, fear, joy, anxiety, pain, elation, and distress. These emotions of conflict assume an inertia of their own. ...
Passion is neither right nor wrong: it is simply there, and so it must be considered as you assess what is causing your conflict
to escalate and what might turn it toward resolution . . . The real cost of conflict is not merely our own legal bill, lost time, or
frazzled emotions. For the HMO, nursing department, or medical practice, the real costs of conflict are the combined losses
for each of the staff members: their time and morale, as well as the impact *305 that the dispute has on the quality of patient
care. For a community health project, the real price of infighting among coalition members is a loss of services and support
for the people they intend to help. For the patient, a breakdown in communication with caregivers results in increased
vulnerability and anxiety over interrupted care, and the negative impact that these emotions can have upon health status. 190
When the hospital in the Johns Hopkins case made the decision not to treat, the child was put in “a side room”:
When asked about medication to hasten the death, [one doctor] replied: “No one would ever do that. No one would ever think
about it because they feel uncomfortable about it . . . a lot of the way we handle these things has to do with our own anxieties
about death and our desires to be separated from that decision that we’re making.
The nursing staff who had to tend to the child showed some resentment at this. One nurse said she had great difficulty just in
entering the room and watching the child degenerate--she could “hardly bear to touch him.” Another nurse, however, said: “I
didn’t mind coming to work. Because like I would rock him. And I think that kind of helped me some--to be able to sit there
and hold him. And he was just a tiny little thing. He was really a very small baby. And he was cute. He had a cute little face
to him, and it was easy to love him, you know?” And when the baby died how did she feel?--“I was glad it was over. It was
an end for him.”191
Some of these emotions are the type of responses we would expect from the suffering and death of another. Beyond this
layer, though, is another layer of what we might call “professional emotions.” These emotions stem from the deep
ambivalence of the health professions on the subject of death. While modern medicine has moved away from Vitalism, the
view that the goal of medicine is to maintain life in any form at any cost, 192 what the norms of the profession permit or
require, are still very unclear. Most doctors would point to the Hippocratic Oath as strong authority for their reluctance to
assist a patient in death, but as bioethicist Christine Cassel has *306 pointed out, modern medicine has abandoned the
Hippocratic proscriptions against performing surgery, offering abortion, and even taking fees for teaching medicine.193 “It is
important not to undermine the fundamental importance of this life-and-death issue, but one should be clear that, just because
a statement is in the Hippocratic oath, it is not automatically a rule that we always have to follow. We should look instead to
the basis of this rule.”194 But the weakening of the prohibition and its Vitalist origins, even in a state that does not sanction
active euthanasia, has left doctors adrift in rapids of identity conflict.
Part of enabling doctors to better deal with the “feelings conversation” is to get them to acknowledge that they have a stake in
and also contribute to the conflict. In particular, doctors are susceptible to a vulnerable professional identity that Stone and
his colleagues call the “all-or-nothing Syndrome,” simple black and white thinking which leads us to defend our identities
either by denial of challenging information (the “all”), or exaggeration of our failing to meet the identity standard (the
“nothing”).195 The solution is to make doctors aware of the tension in their identity--the dual role of life-protector and (in end
of life decision-making) sometimes hastener of death.196 In the ADR model this article develops below, an ideal way to do
this is in involving doctors in drawing up the hospital’s ADR policy as part of Step 0, but it will also be the task of the
bioethical mediator to remind doctors of this tension in their identity. A second step is to help doctors “complexify” their
identity by adopting the “and stance.”197 The “and stance” attempts to direct us away from all-or-nothing thinking by
reminding us that we are not all or nothing, but all and nothing, that no one is ever “always” anything, rather we are complex
changing beings. In the case of doctors, it is the recognition that they are both healers and hasteners of death. Bioethicist
Edmund Pellegrino gives a nice example of a possible statement of the “and stance”:
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Medicine is a healing relationship. Its long term range goal is restoration or cultivation of health; its more proximate goal is
healing and helping a particular patient in a particular clinical *307 situation. Medicine restores health when it is possible,
and enables the patient to cope with disability when cure is not possible. The aims of medicine are positive, even when death
is inevitable. Healing can occur even when cure is impossible. The patient can become “whole” again if the health care
professional helps him to live with a disability, to face dying, and to live as human a life as circumstances will allow. 198
If the Hippocratic Oath is an all-or-nothing conception of the physician’s professional identity, Pellegrino offers us a
complexified identity. Note that even Pellegrino’s conception may not be complex enough, in that it seems to limit a doctor’s
ability to help a patient die to cases when cure is not possible. It is arguable whether patients like Gina Pallone or Baby
Brisay fit into this definition. Therefore, Pellegrino’s conception should not be understood as the model, but rather as an
example of a complexified professional identity. In fact, an ideal part of Step 0 in the ADR model developed below is to have
doctors come up with a complexified statement of their professional role in the end of life setting. Such statements will vary
somewhat from institution to institution, but the neutral coordinating “Step 0,” should push to make sure it is adequately
complexified.
An important implication of a complexified professional role, hopefully clarified by some sort of mission statement produced
at “Step 0,” is that it increases the sphere in which physician intervention is legitimate. If doctors often “lump” it for fear they
are overstepping their bounds, a complexified identity allows them to realize that they are not merely the treating physician
but intimately involved in end of life decision-making as real people with individual emotions, as ambassadors of their
profession (with professional role emotions), and sometimes as safeguards of a patient’s wishes or rights. These three
elements constitute a complex whole, and sometimes they will be at odds with one another, but it is only by recognizing that
all three are present and that the emotions they produce and the stake they give physicians in the outcome of a clinical case
are ‘legitimate,’ that a physician can succeed in end of life negotiation.
Having said that, mediation can also be emotionally taxing on health care professionals. Hoffmann suggests that:
the mediation process . . . involves a commitment of an emotional sort--a willingness to engage in what may be an
emotionally heated debate. This may be uncomfortable for some *308 physicians who wish to avoid conflict and prefer to
have someone else arrive at a solution for them or be their intermediary.
[Another] “threatening” aspect of mediation for physicians may be its “equalizing effect” on the parties. Some mediators, for
example, attempt to have all parties referred to by their first names. This would mean Dr. Smith, might be referred to as
simply “Bob” or “Jane,” stripping the doctor of his or her title of expertise and authority.199
Hoffmann, writing in 1994, anticipated a growing sea change in the practice of medicine. In part due to the pressures of
managed care in the United States,200 conflict resolution is becoming an increasingly important part of a doctor’s training.201
Doctor Leonard Marcus, and his book Renegotiating Health Care, have been particularly influential in this change. However,
medical schools are just beginning to come around to the importance of negotiation skill training. Managing the emotional
threats ADR processes pose to doctors will only be accomplished once broad-based negotiation training becomes possible.
Marcus’ book, which repackages traditional negotiation skill training in the health care setting and connects with doctors via
real-life case studies, should become required reading. What might be done beyond this is discussed in the next Part as “Step
2.”
6. Multiparty Issues
Traditionally, litigation occurs with two parties, each on one side of the “v.” While innovations like the interpleader and
joinder rules mitigate this a bit, standing doctrine and other procedural requirements push the other way, meaning that most
litigation is still one-on-one. ADR may allow a more multiparty approach.202 This is particularly important in death and
dying cases where the configuration of parties is complex and fluid. While Mr. and Mrs. Brisay may present a united front to
the doctors, it probably masks deep divisions *309 and differences. Likewise, Mrs. Smith, the two children, and the doctor
have coinciding interests, diverging but complementary interests, and diverging but conflicting interests. While the ADR
framework may do a better job of accommodating all of these partial overlaps, it also poses difficulties.
The multiparty negotiation literature has seen a recent burgeoning, particularly in discussions of sequencing in corporate and
international negotiations.203 However, much of this literature has a distinct focus on dealmaking and negotiation, while the
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problems in end of life decision-making have more to do with mediation, or perhaps a multi-party difficult conversation.
Perhaps a better fit is the work of Professor Lawrence Susskind and others on regulatory negotiation (“reg-neg”),204 from
which this Article borrows in its model design, especially its “Step 0.” Still, truly exploiting the possible advantages of ADR
in complex configurations of parties will probably have to await a more developed theory of multiparty mediation.
C. Objections and Reservations
Now that we have dealt with two threshold objections to ADR in the end of life decision-making context, and sketched a
positive case for ADR, it is time to consider lingering objections and reservations about when ADR is appropriate.
1. Due Process
ADR in this context poses significant risks: because an ADR model strips away due process protection, it threatens to bully
patients into forfeiting their rights in a way the adjudicatory model may not.205 This is especially likely in the health care
setting where high-powered experts could try to intimidate patients and their families by use of jargon.206 Doctor Eric J.
Cassell has noted that technology *310 widens this gap and cements power domination of the doctor over patients. 207 Many
authors have imagined a future where patients are coerced by their families, grossly or subtly, into choosing refusal of care to
save the living the burden.208 These fears are valid--evidence on the Dutch experience has suggested that, at least in a regime
authorizing physician-assisted suicide, such pressuring does occur.209 What response can this article offer?
The first is to recognize that the correct question is not whether ADR is protective of patients’ rights, but whether it is more
protective than the status quo. If “lumping” is a major part of the status quo,210 and doctors are currently wielding a lot of
unchecked decision-making power,211 then an ADR regime might still be desirable even if it is less due process protective
than a full adjudicatory regime.
Second, to mitigate this concern, the model this article develops offers ADR as a lower-cost step in a sequence that ultimately
includes recourse to an adjudicatory component.212
Third, while ADR always has the threat of undermining due process protections, it is a mistake to think rigorous legalism is
the only way to protect due process and that ADR cannot accommodate this concern. The Joint National Commission on
Health Care Alternative Dispute Resolution, which comprised representatives from the AMA, ABA, and AAA, has, for
instance, developed “A Due Process Protocol *311 for the Resolution of Health Care Disputes.”213 An ADR model should
consider building in these safeguards.
2. When is ADR Not Appropriate?
Because the model this article proposes below builds recourse to the courts as a final step after exhausting all of the more
interest-based processes, there is an argument that (if administered in a cost-efficient and timely manner) ADR is always
appropriate. However, I think there is at least one class of disputes where recourse to the model is futile: when disputes result
from doctors and patients being in substantial agreement but the health care provider fears criminal or civil liability if they
take action.214 To be sure, in some of these cases ADR may solve the problem: by allowing both parties to consult lawyers to
determine what the state of the law is and to provide assurances to the hospital that the patient’s family will not seek legal
recourse. However, given the murkiness and lack of development of legal standards in this area, there will be times when the
parties simply cannot determine whether the course of action will give rise to criminal and legal liability, and recourse to the
courts seems inevitable.215 In such cases, the parties can agree to seek declaratory relief if the prerequisites of standing and
ripeness are satisfied. A second related area where ADR does not seem appropriate is when the patient desires
physician-assisted suicide that is illegal in that state.
A final category involves cases where, after being sufficiently informed about the hospital’s ADR system and its costs and
benefits, the patient or the patient’s presumptive surrogate decision-maker refuses to participate.216 This is a more
controversial proposal, but *312 nonetheless is merited on several grounds. The first is a consideration of how close decisions
about death and dying are to one’s personal core. 217 It seems wrong to force parties to negotiate on a matter that is too
personal and private. The second stems from concerns over how efficacious ADR processes are when forced on parties.218
Third, given the importance of an ultimate access to litigation as a due process safeguard, mandatory ADR would essentially
constitute an “exhaustion” requirement that is at odds with the hope that ADR may offer a more time-sensitive way of
settling disputes in emergency *313 situations.219 This was the approach sanctioned by the Joint National Commission on
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Health Care Alternative Dispute Resolution, which comprised representatives from the AMA, ABA, and AAA in their “A
Due Process Protocol for the Resolution of Health Care Disputes,” which goes beyond just bioethical decision-making.220
Principle 3 of the Protocol is entitled “Knowing and Voluntary Agreement to Use ADR” and provides:
The agreement to use ADR should be knowing and voluntary. Consent to use an ADR process should not be a requirement
for receiving emergency care or treatment. In disputes involving patients, binding forms of dispute resolution should be used
only where the parties agree to do so after the dispute arises. 221
Requiring participants to voluntarily choose ADR processes was also the approach selected by Chicago’s
Rush-Presbyterian-St. Luke’s Medical Center in its path-breaking and very successful malpractice mediation program.222
The alternative approach would be to place mandatory arbitration clauses in the hospital’s agreement to assume care, but it is
not at all clear that courts would be willing to enforce these contracts because they would likely find them contracts of
adhesion--especially in the context of emergency admissions.223 That said, required ADR practices may be more appropriate
when the ADR practice veers towards the informal end of the spectrum; thus in the model developed below, forcing patients
and their families to go through Step 1 seems entirely innocuous, and Step 2 seems slightly more troubling but possibly still
on the acceptable line. It is forcing patients to undergo full-blown arbitration such as that in Step 3 which poses the most
problems.224
*314 IV. A Sketch of an ADR Model for End of Life Decision-making
The purpose of this Part is not to produce a clear and implementable model for ADR in end of life decision-making. Such a
model is highly dependent on the needs and resources of the particular community and hospital. Rather, this section will offer
a sketch of what such a model could look like. If most of this article has conceived the issue at a very high level of
abstraction, this section is meant to concretize the actual process of dispute system design and to highlight areas of further
research--to begin a conversation. The model at a glance:
Step 0: Develop ADR guidelines and system.
Step 1: Attempts by the doctor, patient, family constellation to resolve the issue themselves.
Step 2: Use of a bioethical mediator.
Step 3: Ethics Committee arbitration.
Step 4: Recourse to litigation.
A. Guiding Principles
In designing a model for alternative dispute resolution, several guiding principles come into play.
The first is Ury and his colleagues’ principle of sequencing interest-based methods of dispute resolution before rights-based
methods, leaving power-based methods as a last resort.225 Our four-stage model incorporates this by beginning with a low
cost, informal, interest-based model, moving successively to higher cost, more rights-based model of adjudication.
A second key principle is building in “loop backs,” an innovation of Ury and his colleagues to give avenues from turning
back to lower cost methods of dispute resolution at multiple points along a dispute’s trajectory. 226 Loop backs come in two
forms. First, those that assist in looping back from a rights-based to an interest-based method of dispute resolution, which
vary in formality and cost. These range *315 from information procedures (databases or other sources of information about
how similar disputes were handled in the courts) to advisory arbitration (nonbinding low-cost forms of arbitration that can
give parties an idea of how a court might decide the case) and mini-trials (here the parties are often represented by lawyers, a
trial-like procedure is pursued, supervised by a neutral such as a former judge, and it is watched by a high-level
representative of the hospital with authority to settle but who has not yet been involved in the dispute, with the neutral
capable of giving an advisory adjudication).227 A second category assists looping back from a power contest, including
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“cooling off” periods--specified periods of time where the disputants refrain from engaging in power contests--and the
intervention of third parties.228
Our model attempts to incorporate these loop backs as follows: Stage 3 can be viewed as a form of looping back from a more
rights-based adjudicatory resolution by using the Ethics Committee to arbitrate. Loop backs from power-based methods are
represented by third party intervention in the form of the bioethical mediator in Step 2, and the “cooling off” period that
implicitly pervades all the steps with an understanding that neither the hospital nor the patient will attempt to engage in a
power-based move.229
A third principle is to build in consultation and notification before ADR, and post-dispute feedback after it.230 The
consultation aspect is embodied in Step 0, which attempts to involve all the stakeholders in dispute system design and make
the process as consensual as possible. Soliciting feedback and adapting the model accordingly is an ongoing responsibility of
the person coordinating the system. Post-dispute debriefings should be held after each dispute, and the data aggregated and
used to discuss revisions to the model, at least once a year, by the stakeholders identified at Step 0 (and those stakeholders
who were not anticipated at the initial design point).
Perhaps the most salient piece of advice comes from dispute system design experts Contantino and Sickles Merchant:
*316 Effective design architects embrace the KISS principle (“keep it simple, stupid”). They make ADR simple to use, easy
to access, and readily available, with a minimum of delay. In order for disputants to actually choose ADR, it must be easier to
use than the current dispute resolution system. If ADR becomes too complicated to use or is too frustrating to access,
disputants will default to the status quo, the current dispute resolution mechanism (usually litigation or another rights-based
method), although in some instances the default mechanism may be for the disputants to walk away and not deal with the
conflict at all (which Ury, Brett, and Goldberg call “lumping it”).231
B. The Model in Practice
With these guiding principles in mind, this article will turn to some of the issues that emerge in the design. The model
proposed has five steps involved. The first step is called “Step 0” because it is part of the design architecture and precedes
any on the ground dispute.
Step 0: Develop ADR Guidelines and System232
The first task at this step is to decide who will take the lead on the dispute system design--an internal specialist or an external
consultant?233 While an internal specialist, for instance an assistant counsel for the hospital or the head of the bioethics unit,
enjoys the benefit of the trust of the parties, their enthusiasm for ADR often prompts them to push for too much change too
fast so that they forget the cardinal rule of introducing a change to a well-established system, “go slowly.”234 An external
consultant can bring the experience of previous system design work, the authority of the “paid expert,” and some objectivity
and experience to the subject matter, but the insiders might dismiss her as unfamiliar with the nuances of this design
problem.235 This seems particularly likely if the designer does not have an M.D. or sufficient hospital administration
experience. Ideally, a health care consulting firm might marry the best attributes of the two categories; alternatively, some
form of “buddy system” pairing the external consultant with an insider might be advisable.
*317 Second, there is a need to do an individualized organizational assessment. What is the hospital’s “culture of conflict?”
(How does it deal with conflict? Is conflict viewed as threatening? Is the hospital risk averse?) How do the system’s
“customers” (patients) and “suppliers” (doctors, HMOs) view the conflicts differently? How many disputes are there? What
is their common pattern? At what stage are they resolved? Is there a preference for interest-, power-, or rights-based
methods? Who chooses what method of dispute resolution to use? Who has the authority to settle disputes? Who thinks they
have that authority?236
Once an assessment is done and the hospital has decided how to proceed, a preliminary step will be to design an ADR plan
including criteria as to whether, when, and how to use ADR. This process ought to involve all stakeholders: doctors, patients,
families, risk management, legal counsel for the hospital, organizations supporting the right to die, organizations opposing it,
members of the community, religious groups, ADR experts, and others.
This is a heterogenous group of stakeholders, some are private, some are public, some are small, others large and
well-funded, and many hold diametrically opposed viewpoints. Developing the ADR policy with such a divergent and varied
group is a real challenge, but we might find some helpful proscriptions in the literature on regulatory negotiations
(“reg-neg”). Critics of reg-neg have argued that the process would be insufficiently inclusive because only a limited number
of parties could enter into a reg-neg before it became unwieldy.237 Therefore, the convener of the parties has the power to
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systematically rig outcomes by choosing certain stakeholders to the exclusion of others. 238 Second, they argued that a
consensus-based approach would favor the more powerful and better-financed groups who have access to money,
information, and technical expertise.239 The empirical literature has suggested that these are problems, but perhaps not as
serious as originally anticipated, and has found a high degree of satisfaction with reg-neg.240
Creative solutions might allow the hospital to better manage this tension, for instance having all stakeholders pay into a
common fund in proportion to their size for administrative and other assistance, but dole it out in such a way as to better
enable smaller groups to *318 participate. Having the hospital choose who gets to participate might be seen as partisan. A
better solution might employ a neutral to select the participants. In the reg-neg context, Susskind describes a procedure used
by EPA where the neutral constructs the “players list” out of three concentric circles. The first circle consists of clear
stakeholders, people who have a direct interest in the conflict. The second is made up of people who respond to a letter the
neutral sends out to groups the neutral thinks might have an interest. In the EPA reg-negs there were some pre-requisites: you
needed to attend all the time, follow the ground rules of procedure, come to DC for the meetings (but the administration paid
for their flight). The third circle shows up after the committee is chartered--the people sitting in the audience who say, “no
one is representing my interest.” If the neutral finds that interest not represented, they can be added to the table even if not
formally added to the charter.241 By analogy, in the end of life context, the first circle would be doctors, nurses, the hospital’s
legal counsel, bioethicists, patients, the families of patients who have refused treatment in the past, and probably some others.
The coordinating neutral would send letters to organizations like “Death with Dignity,” “The Hemlock Society,” “The
Society For Law, Life, and Religion,” local religious leaders, groups who have filed briefs as amici in end of life legal cases,
and others. The meetings could be open to the public and allow the neutral to add persons in the third circle.
Even supporters of the reg-neg model are skeptical about its feasibility when the parties hold diametrically opposed and
deeply ingrained moral beliefs,242 and there is a literature on the difficulties of implementing ADR with, for instance,
pro-choice and pro-life groups.243 One response to this is to recognize that such groups may be able to agree on process if not
substance, and here the goal is not to develop a hospital policy on end of life patients but rather to negotiate a process by
which such disputes will be resolved when they come up in the case of individual parties. This is not to say that this *319
more limited goal is not challenging--an entire paper could be written merely on how best to organize stakeholders--but it is
important not to conflate the difficulties of reaching agreement on what hospitals should do in end of life decision-making
with how hospitals should decide what to do.
Can we say anything about the content of the process? While the exact form these guidelines will take will depend on the
consensus of this particular community,244 some of this article’s earlier observations are helpful in forming some broad
suggestions. Clear areas where ADR is not appropriate include when the relief being sought is physician-assisted suicide.
Some but not all of the ADR mechanisms should be omitted in cases where doctors, patient, and family are substantially in
agreement as to a treatment course, and the issue is whether such a course is legally permissible; that is, when the question is
what can we do legally, not what should we do.245 In such cases seeking a declaratory action might be a low-cost approach.
Step 1: Attempts by the Doctor, Patient, and the Family Constellation to Resolve the Issue Themselves.
What can ADR add here? A major part of the answer is skill training and an environment supportive of conciliation. Much of
what we have said before about managing emotions is relevant here,246 as is the clarification of “professional emotions” on
the part of doctors.247 Negotiation training for doctors is a must, and Leonard Marcus’ book is a good start, but book-based
negotiation training can only go so far. Already the negotiation field is beginning to tailor training programs to health care
professionals by using narratives and cases developed by doctors for doctors. 248 The best forms of negotiation training
“combine presentation, demonstration, and discussion of appropriate techniques with simulation, exercises and *320
feedback.”249 Ideally a negotiation “coach” can observe initial real-life negotiations and offer encouragement and a
debriefing following.250 The presence of a “coach” in the intimate end of life decision-making environment may seem
somewhat alienating or difficult to coordinate, so videotaping initial dispute resolution attempts (with the permission of
patients and their families) might be a more workable method. However, such negotiation training is expensive. Until a
critical mass of doctors graduate from medical schools that have embraced the “doctor as negotiator” model, there is a real
resource allocation problem as to whom should get the training. Adopting a “triage” model, the first priority in allocating
training should be emergency physicians and bioethical staff since they are the ones most likely to encounter end of life
decision-making issues, and because due to the time pressures of their work, hospitals are less able to supplement their
skill-level with a “negotiation expert” in the moment. If a hospital is organized into care units, one idea would be to give one
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member of each “team” more advanced negotiation training. 251
More specifically, Constantino and Sickles Merchant identify five types of ADR training and education: marketing efforts
(convincing stakeholders to buy-in),252 awareness education (informing users what ADR is and what role it plays in the
organization),253 conflict management and communication training (generic training not geared towards a particular type of
ADR, “[r]ather, it is focused on increasing participants’ understanding and acceptance of conflict and on improving their
communication skills, including active listening and direct communication”),254 consumer/user training (focusing on what to
expect in the ADR proceeding, how to prepare for ADR, how to identify interests, options, etc.),255 and training of
third-party neutrals.256
*321 Each of these elements are present in our model. Marketing efforts are dealt with as part of Step 0. Awareness education
is both part of Step 0 (designing pamphlets, mission statements, contract language, letting patients know that the hospital uses
an ADR process for end of life decision-making) and Step 1 (making sure doctors, patients, and families know of the ADR
resources available and how to avail themselves of them in the event of a conflict). Ideally, conflict management and
communication training would be given to all health care workers having significant patient contact, and perhaps an even
wider circle to include those responsible for health care administration and insurance issues. Cost constraints probably mean
that such training will be conducted in group settings with less interactivity than is optimal. Consumer/user training should
combine both a skill-based component similar to that taught in many university negotiation programs and a more
domain-specific module about the particulars of this hospital’s ADR processes. As discussed above, this more intensive
training should be given to all emergency doctors, bioethicists, and perhaps to a designated member of each care “team” if
that is the way the hospital is organized. Training of third-party neutrals should be given to bioethicists and to other persons
who will act as bioethical mediators in Step 2 as well as all those who will engage in ethics committee (or other forms of)
arbitration in Step 3.
Step 2: Use of a Bioethical Mediator
In Nancy Dubler’s model, there is a “bioethical mediator” who is not a classical neutral in the sense that she is a member of
the hospital staff, but is somewhat more removed in the sense that she is not just a member of the care team.257 Rather than
hiding her institutional affiliation, the bioethical mediator is open about her role, and understands that her job is to try to
reach a solution about the plan of care with which all parties can be comfortable. 258 Dubler justifies the departure from the
classical neutral on the grounds that:
She possesses sufficient information about the hospital hierarchy and power structure, the medical and ethical issues, and the
cast of characters, to form working hypotheses to guide later phases of the process. She is aware of the disparities of power
that separate families and physicians, the intimidating nature of the setting (especially in ICU), the general confusion about
medical facts--so often, differential diagnosis actually means *322 “we don’t know”--and the vagaries of recovery that
demand supporting the patient or family in the discussions. 259
While Dubler seems largely correct, she seems to give short shrift to agency issues, 260 or at least the perception of
bias/affiliation.261 It seems a chaplain given bioethical training might be better suited for the role than a hospital staff
bioethicist.262 The chaplain has enough of an institutional connection to the hospital to gain familiarity with the hospital and
its staff and to accrue a sufficient amount of experience in mediating these disputes, but would not suffer the perception of
“insider” status. The perceived integrity of chaplains is very high, and to the extent part of the dispute requires engaging
emotional and spiritual issues surrounding death, the chaplain might be the ideal candidate. 263
*323 Perhaps the more important take-away is to have a range of persons capable of serving as bioethical mediators, some
secular, some religious, some more connected to the hospital and some less, and to leave the choice to the patient and his
family, because “when an organization makes a conscious choice to impose a particular type of ADR on certain stakeholders
or constituents, disputants are somewhat less resistant as long as they retain some control over the selection of a neutral.”264
Although theoretically we might worry that giving the patient/family choice of a neutral might cause resistance among
doctors, if the ADR program of the hospital is correctly implemented so that there is sufficient buy-in (including a broad
initial consultation with the staff and feedback), 265 and they are given enough opportunities to work with neutrals and to
evaluate them, the concerns of doctors over neutral choice can be met.
Many have expressed concerns over mediation when there is a large gulf in the relative power of the parties. 266 Reports
suggest that power imbalances favor the educated over the uneducated, 267 and whites over minorities.268 Given that doctors
are largely white and educated, power imbalances are already a problem, on top of which we add the fact that they are the
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“experts” able to command jargon and authority over the patients. While these concerns are very real, they do not seem so
overpowering as to make mediation a bad choice. What is needed is a mediator who is sensitive to these concerns and who is
able to re-balance the power differential. At the same time, these concerns might also support a preference for a non-insider.
More work needs to be done on this issue.
Once an appropriate bioethical mediator is selected, how does he or she work with the parties? This is a rich, highly
experiential process, but besides for some of the earlier suggestions on framing emotions back into the picture, exploring
intermediate options that at first seem invisible, and attempting to enable patients to make autonomous choices, what else can
be said about it in a more systematic way? Dubler’s own practice involved the creation of Bioethics Consultation Service in
the Montefiore Medical Center in the 1970s, consisting of two attorneys (one of whom was also a nurse) and one *324
philosopher who had been trained in dispute resolution and could be called in by the parties. 269 Dubler suggests that
bioethical mediation ought to have three phases.
In the assessment phase, the bioethical mediator helps to identify all the parties and their interests, and develop a common
understanding of the medical facts and options.270 For instance, consultants might be called in to finely tune a prognosis. 271
When coming into [a case], the [bioethical mediation] team asks: Who are the parties to this conflict? What are their
interests? Are those interests in conflict and, if so, how might the conflict be resolved or consensus forged? This formulation
grew out of the clinical finding that most of the events labeled “bioethical dilemmas” were really “conflicts” that pitted
members of the hospital team against each other, or members of the team against some or all of the patient/family
constellation.272
In the development phase, common areas of interest are mined, and areas of agreement and disagreement are mapped. 273
Who will make the decisions--the patient, a proxy, or an informal surrogate decision-maker--is determined.274 Legal and
ethical principles are discussed.275
In the resolution phase, the parties decide who has the authority to decide and what limits on that authority exist. 276 A
“principled solution” needs to be “articulated,” “discussed,” and “accepted,” always in the shadow of law and ethics.277
Step 3: Ethics Committee Arbitration278
Ethics committees have become ubiquitous parts of large hospitals. 279 Before discussing what changes would be necessary to
make *325 Ethics Committees effective arbitration bodies, it is important to understand what extant Ethics Committees
actually do.
Ethics Committees have memberships ranging from as few as three to as many as thirty persons. 280 They ordinarily have a
majority of physician members, and almost all include social workers and nurses, though some do not include ethicists or
persons trained in ethics.281 Many ethics committees include representatives of the “community” but this is often seen as a
token gesture since the community’s representative is often heavily outnumbered.282 Requests for committee review are most
often initiated by physicians, usually after a conflict develops with the patient, or less frequently when a conflict develops
with other health care workers over a patient’s care. 283
Once review is initiated it may proceed via review by the committee as a whole, a consult team made up of committee
members, or a single ethicist acting as consultant.284 They engage in a process of information-gathering, and they may invite
the parties either sequentially or en masse to attend a meeting. 285 The “information” gathered usually consists of the medical
facts, the views of various parties as to what should be done for the patient, and the relevant legal and administrative
information.286 After completing the information-gathering stage, Ethics Committees deliberate among themselves to arrive
at a recommendation:
Committees generally do not view themselves as arbitrators deciding who is “right” between adversarial parties but rather as
independent consulting bodies trying to arrive at the “best” solution to the problem after gathering all of the facts. In an effort
to arrive at a recommendation, typically the committee chair or consultation subcommittee chair facilitates a discussion about
the case...
Ethics committees for the most part have adopted a fairly legalistic or norm-centered approach to the cases that come to them.
In some cases the norms are definitive and provide a resolution of the issues. In other cases, the principles and precedents
may be in conflict. In these cases, the norms simply serve as guidelines or boundaries for the committee’s recommendation
and the *326 values of the committee members themselves as well as the committee’s dynamics and personalities may be
determinative of the committee’s recommendation. The committee members typically arrive at a recommendation by
reaching a consensus on the case. The resulting advice then usually reflects a combination of “expert” thinking on the issues
from a number of disciplines, consistent with relevant ethical and legal norms, as well as a democratic process where all
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those in attendance have a say in the outcome.
The committee’s recommendation is routinely conveyed to the health care provider involved in the case and, in some cases,
is included in the medical record. A few committees also provide a written response to the patient or the patient’s family
setting forth their recommendation and the reason for it. The committee’s recommendation is considered to be advisory only,
not binding, yet in most cases it is given considerable weight, especially by the health care provider. 287
This description is really a median description, a composite that captures most ethics committees, and it is important to
recognize that individual hospital practices vary a great deal. However, taking this description as average, it is clear there are
a number of changes necessary to use an Ethics Committee in a more ADR-focused process, which envisions a process more
like nonbinding advisory arbitration or mini-trial.
First, Ethics Committees give inadequate due process protection to patients. As Susan Wolf has suggested, they fail to
provide basic protections like “notice, an opportunity to be heard, a chance to confront those in opposition, receipt of a
written determination and a statement of reasons, and an opportunity to challenge that determination.”288 Because a major
contributor to emotional settlement is the ability to be heard, the informal information gathering process of the Ethics
Committee falls short. Second, the Committee does not always have authority to bind the hospital. Finally, its ability to act as
a loop back for a rights contest is inhibited by its lack of congruence with adjudication; its determination of who ought to
prevail is based on such a fuzzy amalgam of law, ethics and medicine; and its determinations take such an unofficial “yes/no”
form that the parties cannot use it as a predictor of their likelihood to prevail at litigation.
*327 Thus, as they currently stand, Ethics Committees seem ill-suited to serve the purposes of an ADR model. If they do not
seem to be right for the job, what incentive is there to try to “reform” them into more arbitration-appropriate bodies? This
article’s preference for the Ethics Committee as the body to do the more arbitration-oriented part of the model is partially a
desire to adapt ADR’s form to the fuss, and an attempt to sell ADR to hospital clients by showing how currently existing
practices can be reformed to enable ADR rather than requiring the daunting task of starting from scratch. However,
Hoffmann has observed that Ethics Committees “may be perceived not only as lacking neutrality or objectivity but [also] as
‘provider-focused.”’289 There is a great deal of variance among Ethics Committees; some look more like ADR institutions
while others seem more like expert decision-makers. Whether it is possible to reform an Ethics Committee into an “ADR
Ethics Committee” will depend a great deal on the formality of the current process.
In principle there is no reason why a separate body from the Ethics Committee couldn’t be the one to conduct the arbitration
process, either in Step 3 or as a step following Step 3. That is to say, though based on pragmatic concerns about increasing
buy-in for ADR and using a body that has developed some expertise in bioethical decisions, the preference for Ethics
Committee arbitration in the model is just that, a preference, and what really matters is providing an arbitration-like process
as a loop back from full-on rights-based adjudication via litigation.
What would an “ADR-oriented Ethics Committee” look like?
Membership: It could be large, although on any given dispute a panel of five members arbitrating the dispute is probably a
realistic maximum. Some form of rotation or selection off a list could be used to determine which members of a larger
committee actually sit.290 *328 While a physician and community representative might be helpful as constituent members,
lawyers or retired judges familiar with the roles of arbitrators and the course of legal proceedings are essential. What is
indispensable is that the panel not be insiders. If having physicians sit on the panel is seen as essential, it may be useful to use
physicians who teach at local medical schools or who do not practice at that particular hospital. The make-up of the
Committee is one of the key items that should be decided at Step 0.
Initiation: In keeping with the sequencing of low- to high-cost methods of dispute resolution, the process should be initiated
at the request of the patient, her family, any member of the health care team, or the bioethical mediator if he or she is
unsatisfied with the resolution at Step 2.
Methodology: Here there is a spectrum of formality that will depend on the individual hospital and its resources, ranging
from advisory arbitration to mini-trial. In principle, there is no reason why the Committee might not offer multiple options
along the spectrum of formality at the election of the parties. Depending on the level of formality chosen, the parties might
represent themselves or seek legal representation.291
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*329 Opinion: This should be delivered in writing, be well elaborated, and be the kind of opinion that can give the parties
information relevant to how a court might decide the dispute.
Bindingness: What is essential is that someone present at the arbitration process has the authority to bind the hospital. If
power imbalances favoring the hospital are a concern in the process, one possibility to “retilt” the system might be to make
the arbitration “asymmetrically binding,” making the hospital abide by the arbitration decision while the opposing parties are
not equivalently bound. If there are concerns about this, some kind of safety valve could be provided. For instance, the
binding nature of the Ethics Committee decision could be overruled by a majority vote of the Hospital’s board of directors.
Step 4: Litigation
When negotiation, mediation, and arbitration fail to resolve the disputes, the parties should be free to seek litigation. Even so,
the ADR processes should have been able to refine the issues and give the parties some emotional settlement that court
adjudication often cannot. In our model, litigation is not a “failure” of the ADR system; rather, it is an acknowledgement of
the importance of these disputes to the parties and the role a court forum has in American society.
Conclusion
Terry Schiavo’s case highlights what each of us fears about our own deaths: that we will not die with dignity, that our wishes
may not be followed, that decisions on our treatment may tear apart our families and bring rancor to the lives of those we
love. Terry Schiavo’s case also shows that in quelling our fears, the adjudicatory model offers scant succor. While in theory,
advanced directives offer a promising resting point for American jurisprudence’s unsatisfying oscillation between full-on
adjudication and completely private determination, in practice they have never caught on. The ideas and techniques ADR has
cultivated over the last thirty years offer us, and our families, a chance to do better. ADR can:
• Help to resolve “misunderstandings” that the adjudicatory model tends to treat as full-blown “disputes;”
• Identify intermediate options that satisfy both parties and remove the need for rights-oriented dispute resolution;
• Offer a lower-cost form of rights-oriented adjudication when a dispute must be “decided;”
*330 • Enable the patient and free him from the debilitating “object” status accorded to him by adjudication; and
• Offer emotional settlement lacking in the typical litigation process.
Concerns about cost, due process protection, and institutional resistance to implementing such an approach add complexity,
but this article has suggested possible approaches to solve those problems. Moreover, these concerns have to be compared to
those attaching to the status quo regime that consists of large amounts of “lumping” it. While the details of an appropriate
ADR framework will vary from institution to institution, this article has offered a five-step model for implementing an
ADR-informed approach to end of life decision-making, as well as discussing alternative options at every stage. It is only by
combining the work of fields such as medicine, law, and organizational development that we are able to provide a thing of
major concern to the aging population of America: the assurance of dying well.
Footnotes
d1
Law clerk to Chief Judge Michael Boudin, U.S. Court of Appeals for the First Circuit. J.D., Harvard Law School. Thanks to
Carrie Jablonski, Vanessa Liu, Hansel Pham, Eric Cadesky, Jason Schmitt, and Dan Vogel for helpful comments on earlier
versions of this article. Special thanks to Bob Bordone. This article was made possible thanks to a grant from the Hewlett
Foundation and the support of the Program on Negotiation at Harvard Law School. This article was awarded a 2003 CPR Institute
for Dispute Resolution Award of Excellence.
1
Abby Goodnough, With His Wife in Limbo, Husband Can’t Move On, N.Y. Times, Nov. 2, 2003, at A18; Manuel Roig-Franzia,
After Years of Battles, Comatose Woman’s Feeding Tube Removed; Parents Protest ‘Right-to-Die’ Case in Florida, Wash. Post,
Oct. 16, 2003, at A2.
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2
Goodnough, supra note 1, at A18; Roig-Franzia, supra note 1, at A2.
3
Abby Goodnough, Governor of Florida Orders Woman Fed in Right-to-Die Case, N.Y. Times, Oct. 21, 2003, at A1.
4
Roig-Franzia, supra note 1, at A2.
5
Id.
6
In re Guardianship of Schiavo, 851 So. 2d 182 (Fla. Dist. Ct. App. 2003); Abby Goodnough, Spouse Fights New Law Over
Feeding Tube, N.Y. Times, Oct. 29, 2003, at A16.
7
In Fla., Gov. Bush Seeks Trial Over Brain-Damaged Woman, Wash. Post., Nov. 20, 2003, at A22.
8
In “physician-assisted suicide,” it is an action of the patient rather than his doctor which directly causes the death, though the
physician assists by acquiring a lethal drug, advising the patient how to end their life, etc. “Active euthanasia” is usually defined
as the use of palliatives or other drug agents to end the life of a patient. The key distinction is that in “active euthanasia,” the
action of the doctor directly causes the patient’s death. The removal of life-sustaining treatments like ventilators and nasogastric
tubes or the failure to perform life-saving surgery that causes the death is usually classified as “passive euthanasia” or simply
“cessation of treatment.” These are to be further contrasted with “involuntary euthanasia,” which involves the termination of a
patient’s life against his will. Many authors have rejected the distinction between cessation of treatment and physician-assisted
suicide and voluntary euthanasia. See, e.g., Helga Kuhse, Voluntary Euthanasia and Other Medical End-Of-Life Decisions:
Doctors Should be Permitted to Give Death a Helping Hand, in Birth to Death: Science and Bioethics 247 (David C. Thomasma
& Thomasine Kushner eds., 1996) (arguing that given appropriate consent, the line between active and passive euthanasia is not
morally relevant); James Rachels, Active and Passive Euthanasia, in Contemporary Issues in Bioethics 439 (Tom L. Beauchamp
& LeRoy Walters eds., 1994) (arguing that there is no morally relevant difference between “killing” and “letting die”). But see,
e.g., Tom L. Beauchamp, A Reply to Rachels on Active and Passive Euthanasia, in Contemporary Issues in Bioethics 439, 442
(Tom L. Beauchamp & LeRoy Walters eds., 1994) (arguing that although Rachels is right that the distinction is sometimes
morally irrelevant, on the whole it ought to matter for moral assessment and legal consequences). The Netherlands has
experimented with a regulated form of voluntary euthanasia since at least 1987. See, e.g., John Griffith, Alex Bood & Heleen
Weyers, Euthanasia and the Law in The Netherlands (1998); Herbert Hendin, Seduced By Death: Doctors, Patients, and the Dutch
Cure (1997); G. Steven Neeley, The Constitutional Right To Suicide, The Quality Of Life, and The ‘Slippery-Slope‘: An Explicit
Reply to Lingering Concerns, 28 Akron L. Rev. 53, 67-76 (1994). Thousands of works have discussed physician-assisted suicide
and voluntary and involuntary active euthanasia; Derek Humphrey has prepared a representative bibliography available at
http://www.rights.org/deathnet/ergo_reading.html (last visited February 14, 2004).
9
Based on Dep’t of Human Servs. v. Northern, 563 S.W.2d 197 (Ct. App. Tenn. 1978).
10
Based on Case Presentation: Baby Owens: Down’s Syndrome and Duodenal Atresia, in Intervention and Reflection: Basic Issues
in Medical Ethics 100-02 (Ronald Munson ed., 2d ed. 1983). In the original presentation, the infant suffered from Down’s
Syndrome, not Lesch-Nyhan syndrome; but in the 20 years since its original presentation, the acceptance of Down’s Syndrome
children in society has markedly increased so that it is very unlikely hospital staff would allow the nontreatment in this case. To
preserve the story as a “hard case,” I have made the change to Lesch-Nyhan syndrome. For more information about this syndrome
and other congenital defects, see Robert F. Weir, Selective Nontreatment of Handicapped Newborn, in Ethical Issues in Modern
Medicine 416 (John D. Arido & Bonnie Steinbock eds., 4th ed. 1995).
11
Based on a case study in Nancy Dubler & David Nimmons, Ethics on Call 151-53 (1992).
12
Based on a case study from John D. Arras, The Severely Demented, Minimally Functional Patient: An Ethical Analysis, 36 J. Am.
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Geriatrics Soc’y 938 (1988).
13
See generally Daniel Callahan, Aging and the Ends of Medicine, 530 Annals N.Y. Academy Sci. 125 (1988) (arguing that
advances in technology have led to the devotion of too large a part of the health care budget to extending the lives of seniors);
Eric J. Cassell, The Sorcerer’s Broom: Medicine’s Rampant Technology, 23 Hastings Cent. Rep. 32 (1993) (discussing the perils
of technology on the administration of health care). See also Callahan, supra at 129 (“The future goal of medicine in the care of
the aged should be that of improving the quality of their lives, not in seeking ways to extend their lives. In its longstanding
ambition to forestall death, medicine has, in the care of the aged, reached its last frontier.”).
14
See generally Robert H. Mnookin & Lewis Kornhauser, Bargaining in the Shadow of the Law: The Case of Divorce, 88 Yale L.J.
950, 997 (1979).
15
See supra note 8 and sources cited therein.
16
See, e.g., Mnookin & Kornhauser, supra note 14 (divorce law); Marc L. Busch & Eric Reinhardt, Bargaining in the Shadow of the
Law: Early Settlement in GATT/WTO Disputes, 24 Fordham Int’l L.J. 158 (2000) (WTO Disputes); Ron M. Rosenberg,
Legislative Development: When Sovereigns Negotiate in the Shadow of the Law: The 1998 Arizona-Pima Maricopa Gaming
Compact, 4 Harv. Negot. L. Rev. 283 (1999) (negotiations between tribes and U.S. states on gaming, against the background of
the Seminole Tribe decision).
17
See Robert C. Bordone, Notes, Electronic Online Dispute Resolution: A Systems Approach--Potential, Problems, and a Proposal,
3 Harv. Negot. L. Rev. 175 (1998). Bordone’s vision of an ADR framework has become reality, at least for the limited area of
domain name disputes, in the Uniform Domain Name Dispute Resolution Policy. See Keith Blackman, Note, The Uniform
Domain Name Dispute Resolution Policy: A Cheaper Way to Hijack Domain Names and Suppress Critics, 15 Harv. J.L. & Tech.
211 (2001).
18
See Bordone, supra note 17, at 181-83.
19
Carrie Menkel-Meadow, W.M. Keck Foundation Forum on the Teaching of Legal Ethics: The Trouble with the Adversary System
in a Postmodern, Multicultural World, 38 Wm. & Mary L. Rev. 5 (1996).
20
Id. at 8:
Even in situations that call simply for factual determinations, the complexities of modern life--for example, the strong race issues
implicated in several recent, notorious American cases--contribute to the problematic result that different people will interpret the
same ‘fact‘ in different ways. Because of such interpretive differences, therefore, I find not only the structures of the adversary
system wanting, but also how we think about the people within those structures.
21
Id. at 9-10:
Furthermore, the complexities of both modern life and modern lawsuits have shown us that disputes often have more than two
sides in the sense that legal disputes and transactions involve many more than two parties. Procedures and forms like interpleader,
joinder, consolidation, and class actions have attempted to allow more than just plaintiffs’ and defendants’ voices to be heard, all
the while structuring the discourse so that parties ultimately must align themselves on one side of the adversarial line or another.
Multiparty, multiplex lawsuits or disputes may be distorted when only two sides are possible. Consider all of the multiparty and
complex policy issues that courts contend with in environmental clean-up and siting, labor disputes in the public sector, consumer
actions, antitrust actions, mass torts, school financing and desegregation, and other civil rights issues, to name a few examples.
22
See, e.g., Alan A. Stone, Psychiatry and the Law, in Harvard Guide to Psychiatry, 798, 812 (Armand J. Nicoli, Jr. ed., 1988).
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23
In re Karen Quinlan, 355 A.2d 647 (N.J. 1976).
24
Stone, supra note 22, at 812. See Quinlan, 355 A.2d at 671-72:
We repeat for the sake of emphasis and clarity that upon the concurrence of the guardian and family of Karen, should the
responsible attending physicians conclude that there is no reasonable possibility of Karen’s ever emerging from her present
comatose condition to a cognitive, sapient state and that the life-support apparatus now being administered to Karen should be
discontinued, they shall consult with the hospital ‘Ethics Committee‘ or like body of the institution in which Karen is then
hospitalized. If that consultative body agrees that there is no reasonable possibility of Karen’s ever emerging from her present
comatose condition to a cognitive, sapient state, the present life-support system may be withdrawn and said action shall be
without any civil or criminal liability therefore, on the part of any participant, whether guardian, physician, hospital or others.
By the above ruling we do not intend to be understood as implying that a proceeding for judicial declaratory relief is necessarily
required for the implementation of comparable decisions in the field of medical practice.
25
In re Claire Conroy, 486 A.2d 1209 (N.J. 1985).
26
Id. See also Stone, supra note 22, at 812-13. The Supreme Court of the United States approved the rejection of this distinction in
Cruzan v. Director, Missouri Department of Health, 497 U.S. 261 (1990).
27
See, e.g., Tom L. Beauchamp & James F. Childress, Principles of Biomedical Ethics 200 (4th ed. 1994) (“Refusal of ordinary
means of treatment was long considered suicide, but refusal of extraordinary means was not. Likewise families and physicians did
not commit homicide if they withheld or withdrew extraordinary means of treatment from patients”).
28
Id.
29
Id. at 201-02.
30
Id. at 202.
31
See, e.g., Beauchamp & Childress, supra note 27, at 201 (describing ventilators as having been thought of as “extraordinary”
treatment).
32
See, e.g., H. Tristram Engelhardt, Jr., Ethical Issues in Aiding the Death of Young Children, in Intervention and Reflection: Basic
Issues in Medical Ethics 121 (Ronald Munson ed., 2d ed. 1983) (applying quality of life determinations to retarded newborns and
arguing for an “injury of continued existence”); E.W. Keyserlingk, Sanctity of Life and Quality of Life: Are They Compatible?, in
Contemporary Moral Issues 112 (Wes Cragg & Christine Koggel eds., 5th ed. 1997) (suggesting that the sanctity of life principle
acts as a constraint on the quality of life principle by allowing decision-makers to consider only benefit and burden to the patient
in question, not the social usefulness of the life, that is, its value to others); Lawrence J. Schneiderman et al., Medical Futility: Its
Meaning and Ethical Implications, in Ethical Issues in Modern Medicine 281 (John D. Arras & Bonnie Steinboch eds., 4th ed.
1995) (discussing quality of life determinations more generally and attempting to reconcile it with the concept of medical futility).
33
See, e.g., Karl Llewellyn, Some Realism About Realism--Responding to Dean Pound, 44 Harv. L. Rev. 1222, 1239 (1931):
[We have] come close to demonstrating that in any case doubtful enough to make litigation respectable the available authoritative
premises --i.e., premises legitimate and impeccable under the traditional legal techniques-- are at least two, and that the two are
mutually contradictory as applied to the case in hand. Which opens the question of what made the court select the one available
premise rather than the other. And which raises the greatest doubts as to how far that supposed certainty in decisions which derive
merely from the presence of accepted rules really goes.
This Realist critique of liberal legality has been picked up and extended by the Critical Legal Studies movement (“Crits”), arguing
that every hard case offers an open choice between principle and counter-principle, enabling either of two contrary decisions.
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Therefore, the one a judge chooses is a product of her individual morality or political persuasion. For an attempt to defend against
this from the Idealist camp, arguing that there is one “right answer,” see generally, Ronald Dworkin, Hard Cases, 88 Harv. L.
Rev. 1057 (1975).
34
See Keyserlingk, supra note 32, at 119:
[A]rguments that [quality of life] criteria are necessarily more likely to result in subjective decisions about the “worth” of the lives
of others than the means criteria are not convincing. The ordinary-extraordinary-means distinction is notoriously ambiguous, and
in any case cannot really escape consideration of the quality or condition of the patient in question.
Others contend that quality of life can be a more objective measure. British Economist Alan Williams developed a conception of
“Quality Adjusted-Life Years” (QALYs) which starts from the assumption that “if an extra year of healthy (i.e., good quality)
life-expectancy is worth one, then an extra year of unhealthy (i.e., poor quality) life expectancy must be worth less than one (for
why otherwise do people seek to be healthy?).” Beauchamp & Childress, supra note 27, at 309. Trade-offs can then be calculated
between length and quality of life (i.e., QALYs = Years of Life x Quality of Life Modifier (ranging from 1 to .001, 1 being a
healthy normal quality of life, .001 being a wretched purgatorial one)). See, e.g., id. at 309-14. Although QALYs have had
moderate success in the area of health care rationing (e.g., deciding how to distribute an organ between possible transplant
candidates or a dialysis bed between possible patients), they have not been widely accepted in end of life decision-making.
35
I am indebted to Prof. Lewis Sargentich for these terms.
36
See, e.g., Dworkin, supra note 33 (arguing that what saves constitutional adjudication and makes possible a “right answer” in that
context is a large amount of doctrine and principles constraining the judge).
37
That is, outside of the physician-assisted suicide context. There have been two opinions regarding the constitutionality of
prohibitions on physician-assisted suicide, Washington v. Glucksberg, 521 U.S. 702 (1997) (holding Washington’s prohibition on
against causing or aiding a suicide did not violate the Due Process clause), and Vacco v. Quill, 521 U.S. 793 (1997) (holding New
York’s prohibition on assisting suicide did not violate the Equal Protection clause of the Fourteenth Amendment). However, as
discussed in the text accompanying note 8, the focus of this paper is on death and dying outside of the physician-assisted suicide
context.
38
Cruzan v. Dir., Mo. Dep’t of Health, 497 U.S. 261 (1990).
39
Id. at 285.
40
Id. Six months later, the Cruzans returned to Missouri Court with several of their daughter’s former co-workers who testified that
Nancy Cruzan had told them she never wanted to live like a vegetable. The state court ruled that this now met the “clear and
convincing evidence” standard, and it gave permission for removal of the life-sustaining feeding tube. Malcolm Gladwell,
Woman in Right to Die Case Succumbs, Wash. Post, Dec. 27, 1990, at A1.
41
See John D. Arras & James Rachels, Beyond Cruzan: Individual Rights, Family Autonomy and the Persistent Vegetative State, in
Contemporary Issues in Bioethics 404, 405 (Tom L. Beauchamp & LeRoy Walters eds., 1994). In fact, many states use the “best
interest” test, or could conceivably use the “substituted judgment” test but with a lower evidentiary threshold.
42
Id. at 407. Arras suggests that Missouri interpreted its test to require:
[a] solemn and constant announcement of precise treatment wishes under carefully articulated circumstances (e.g., “If I am ever in
a persistent vegetative state, I solemnly declare that I do not wish to receive artificial nutrition and hydration.”). ... Although the
evidence amassed in the Cruzan case failed this exaggerated test, it is hard to understand how anyone could deem it either unclear
or unconvincing in the common meaning of these terms. Nancy’s mother, sister and two long-time friends testified, for example,
that Nancy stated several times that she would never want to live in this sort of condition. Although her wishes regarding different
treatment modalities were not specific, Nancy definitely expressed a preference for discontinuance of treatment under certain
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circumstances (e.g., if she “couldn’t live halfway normally” or were a “vegetable”).
Id. at 407. It is hard to determine whether this practice is idiosyncratic to Missouri or a reality in most courts that have adjudicated
death and dying decision-making. While the ability to “fudge” determinations under a clear and convincing standard is
hypothetically possible in any legal area where it is used, as discussed above, text accompanying note 36, it is particularly likely
to occur in the death and dying context. Terry Schiavo’s case acutely illustrates the problem with this kind of test; her husband
Michael claims she once stated that she did not want to live as a vegetable. Her parents have suggested that his claim is not
credible evidence because Terry was contemplating divorcing him, because he has an interest in money received by her estate in a
malpractice suit, and because he may have himself been responsible for the course of events leadings to her brain damage. Abby
Goodnough, A Right-to-Die Battle Enters Its Final Days, N.Y. Times, Oct. 21, 2003, at A12.
43
Id.
44
See infra text and accompanying notes 126-53.
45
Arras & Rachels, supra note 41, at 408.
46
Superintendent of Belchertown State School v. Saikewicz, 370 N.E.2d 417 (1977).
47
Id. at 420.
48
Id. at 419.
49
Id. at 422.
50
Saikewicz, 370 N.E.2d at 435.
51
See Stone, supra note 22, at 812 (“While other state courts soon followed New Jersey’s precedent [in Quinlan], Massachusetts
established a much more cumbersome procedure that required judges, rather than families, to make decisions about terminating or
refusing treatment”) (citing Saikewicz, 370 N.E.2d at 433-34).
52
Saikewicz, 370 N.E.2d at 434 (citation omitted) (emphasis added).
53
Id. at 434-35.
54
Stone, supra note 22, at 812.
55
See, e.g., In re A.C., 573 A.2d 1235, 1264 n.2 (D.C. 1990) (“Because judgment in [life and death cases] involves complex
medical and ethical issues as well as the application of legal principles, we would urge the establishment--through legislation or
otherwise--of another tribunal to make these decisions, with limited opportunity for judicial review.”); In re Guardianship of
Browning, 568 So. 2d 4, 15 (Fla. 1990) (“[W]e are loath to impose a cumbersome legal proceeding at such a delicate time in those
many cases where the patient neither needs nor desires additional protection.”). see also Diane E. Hoffmann, Mediating Life and
Death Decisions, 36 Ariz. L. Rev. 821, 822 n.5 (1994) (discussing how this tendency is even more pronounced in appellate
decisions where the vast majority of opinions makes it clear that these decisions should be made by patients, families, and health
care providers based on statutory criteria, but that district courts seem more equivocal on the issue).
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56
Hoffmann, supra note 55, at 823.
57
See Roberto M. Unger, The Critical Legal Studies Movement 63-67 (1983); see also Charles Fried, Contract as Promise 90 (1981)
(criticizing the dichotomy).
58
Hoffmann, supra note 55. Cf. Leonard J. Marcus & Edward A. Dauer, A New Era: Transformation of Health Care Expands
Importance of Conflict Resolution, Disp. Resol. Mag., Spring 1999, at 3, 6 (speaking more generally about the health care
context: “As we know, early dispute resolution-- mediation, interest-based negotiation and consensus building--can avert what
could ultimately become a source of service disruption, personal and professional angst, and avoidable costs”).
59
See generally Hoffmann, supra note 55.
60
Id. at 867.
61
See generally, e.g., Roger Fisher et al., Getting To Yes (2d ed. 1991); Robert H. Mnookin et al., Beyond Winning (2000).
62
Katherine T. Bartlett, Rethinking Parenthood as an Exclusive Status: The Need For Legal Alternatives When the Premise of the
Nuclear Family Has Failed, 70 Va. L. Rev. 879, 883 (1984) (suggesting the underlying assumption of the indivisibility of the
child in custody disputes).
63
Hoffmann, supra note 55, at 868; see generally Bartlett, supra note 62.
64
The title of a chapter on the nontreatment of retarded newborns of a prominent bioethics treatise reflects this assumption of only
two choices: Treating or Terminating the Problem of Birth Defects, in Intervention and Reflection: Basic Issues in Medical
Ethics, supra note 10, at vi.
65
Hoffmann, supra note 55, at 868.
66
H. Peyton Young, Dividing the Indivisible, in Wise Choices: Decisions, Games, and Negotiations 370, 370-71 (Richard J.
Zeckhauser et al. eds., 1996).
67
Id. at 370, 376.
68
Id. at 375-76.
69
Id. at 373-74. To be fair, Young concedes that “[t]hese eight methods do not exhaust the possibilities for dividing an indivisible,
but I do not know of others that are frequently used.” Id. at 375.
70
See Young, supra note 66, at 375-76 (applying these methods); id. at 376:
If the court adjudicates the outcome, however, probably the most common solution is to give sole custody to the parent who is
judged to be fittest to raise the child. This is an instance of the all or nothing method.
These examples show clearly that the various methods of defining property rights are not equally attractive in all cases.
Nevertheless it is important for the parties to recognize how many different approaches there are. Furthermore, it could happen
that all parties to a negotiation prefer one form of property rights to another, that is, one form is Pareto-superior to the other. For
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example, if the good is a child, one could imagine that both parents prefer a rotation scheme to a lottery.
71
Id. at 372 (emphasis added).
72
This insight, of course, is well-known in the negotiation literature. See, e.g., Fisher et al., supra note 61, at 57-58 (discussing how
generating options is stifled by the presence of the other side in positional negotiation); Mnookin et al., supra note 61, at 3-43
(similar).
73
Cf. Hoffmann, supra note 55, at 868.
74
Id.
75
See Nancy K. Rhoden, Treating Baby Doe: The Ethics of Uncertainty, in Contemporary Issues in Bioethics 419, 423 (Tom L.
Beauchamp & LeRoy Walters eds., 1994).
76
Cf. Hoffmann, supra note 55, at 868 (discussing trial periods for ventilators). But cf. Rhoden, supra note 75, at 423-24 (discussing
and critiquing “wait until certain” approaches). Perhaps we might re-conceptualize this as having the parties creating value based
on differences between them, in particular differences in time preferences and differences in forecasts. See Mnookin et al., supra
note 61, at 14-16. Of course, this tactic may just delay an inevitable more binary decision, and by allowing parental attachment to
the newborn, add to the emotional difficulty of a choice of nontreatment.
77
See William Ury et al., Getting Disputes Resolved 52-54 (1993) (discussing these techniques); see also infra text and
accompanying notes 226-27.
78
See discussion infra text and accompanying notes 153-164 & 169-190.
79
See, e.g., Hendin, supra note 8 (discussing suicide contracts in the context of the famous Chabot case in the Netherlands).
80
Rodriguez v. British Columbia A.G., 3 S.C.R. 519 (1993).
81
Id.
82
See Gail J. Povar, Evaluating Ethics Committees: What Do We Mean by Success?, 50 Md. L. Rev. 904, 912 (1991) (stating that
at George Washington University Medical Center, where Povar chairs the ethics committee, and at other institutions that she is
familiar with, “many consults arise more from failures of communication than from clear ethical discomfort”).
83
Nancy Neveloff Dubler, Heroic Care Cases: When Difficult Decisions About Care are Near, Mediation Can Help Bridge the
Communications Gap, Disp. Resol. Mag., Spring 1999, at 7.
84
Goodnough, supra note 3, at A1.
85
Id.
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86
Goodnough, supra note 42, at A12.
87
Richard H. Fallon Jr., et al., Hart and Weschler’s The Federal Courts and The Federal System 67 (5th ed. 2003).
88
Id. at 68-69.
89
See generally id. at 67-73 and sources cited therein (reviewing the debate).
90
See Cathy A. Constantino & Christina Sickles Merchant, Designing Conflict Management Systems 42 (1996) (expressing a
preference for adjudication over ADR when important public policy issues are at stake).
91
Ury et al., supra note 77, at 17.
92
Harry T. Edwards, Alternative Dispute Resolution: Panacea or Anathema, 99 Harv. L. Rev. 668, 671 (1986).
93
Owen M. Fiss, Against Settlement, 93 Yale L.J. 1073, 1075 (1984).
94
Id. at 1085.
95
See supra text and accompanying note 82.
96
Edwards, supra note 92, at 678-79.
97
See id. at 672-78 (applying this distinction and finding the “adjunct” role as much less problematic).
98
Id. at 674-75.
99
Id. at 682.
100 262 U.S. 390 (1923) (reversing a conviction for teaching German in violation of a state law prohibiting the teaching of foreign
languages to young children).
101 268 U.S. 510 (1925) (finding unconstitutional an Oregon law requiring children to attend public rather than parochial schools).
102 Lochner v. New York, 198 U.S. 45 (1905).
103 See, e.g., Kathleen M. Sullivan & Gerald Gunther, Constitutional Law 508-09 (14th ed. 2001) (discussing Pierce and Meyer as
antecedents for the Court’s jurisprudence of end of life decision-making); see also Cruzan v. Dir., Mo. Dep’t of Health, 497 U.S.
261, 341 (1990) (Stevens J., dissenting) (citations omitted) citing Meyer, among other cases to support the proposition that:
Dying nonetheless remains a part of “the life which characteristically has its place in the home.” The “integrity of that life is
something so fundamental that it has been found to draw to its protection the principles of more than one explicitly granted
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Constitutional right,” and our decisions have demarcated a “private realm of family life which the state cannot enter.” ... [T]his
Court has long recognized that the liberty to make the decisions and choices constitutive of private life is so fundamental to our
“concept of ordered liberty,” that those choices must occasionally be afforded more direct protection.
104 Being careful not to slip into the “completely private” end of the assumption of binary resolution discussed in Part II, supra.
105 Edwards, supra note 92, at 682.
106 Here there is a nice analogy to the doctrine of preemption of state law by Congress, where the key inquiry is whether Congress
has regulated to a sufficient extent to suggest a desire to “occupy the field.” See, e.g., Rice v. Santa Fe Elevator Corp., 331 U.S.
218 (1947) (inquiring as to whether the scheme of federal regulation for grain elevators was so pervasive as to make reasonable
the inference that Congress left no room for the states to supplement it).
107 See supra text and accompanying notes 55-56. Some have argued that judges have a systematic bias against refusals of treatment.
See Dubler & Nimmons, supra note 11, at 26, recounting a case study and observing that:
Because such questions are both emotionally and politically charged, they make judges enormously uncomfortable. This judge,
like some of his peers, held his job through a political process of election or appointment and never forgot that fact. Judges know
that it is much less politically risky to prolong rather than terminate life. Even if doing so means overriding a person’s wishes,
violating a judge’s personal jurisprudential values; even if, as in this case, it means refusing to honor the very clear New York
law, judges feel safer decreeing for life.
108 Gilmer v. Interstate/Johnson Lane Corp., 500 U.S. 20 (1991).
109 Id. at 27-28.
110 See supra text and accompanying notes 37-45.
111 See infra text and accompanying notes 139-46 for an application of this argument to competency determinations.
112 See generally Duncan Kennedy, Form and Substance in Private Law Adjudication, 89 Harv. L. Rev. 1687, 1688-89 (1976):
[I]f private actors can know in advance the incidence of official intervention, they will adjust their activities in advance to take
account of them. From the point of view of the state, this increases the likelihood that private activity will follow a desired
pattern. From the point of view of the citizenry, it removes the inhibiting effect on action that occurs when one’s gains are subject
to sporadic legal catastrophe.
113 See supra text and accompanying notes 40-45.
114 See, e.g., David J. Doukas & Laurence B. McCullough, The Values History, in Contemporary Issues in Bioethics 363 (Tom L.
Beauchamp & LeRoy Walters eds., 1994) (discussing shortcomings of living wills and durable powers of attorney including how
their imprecision leads to difficulty in application); Linda L. Emanuel & Ezekial J. Emanuel, The Medical Directive, in
Contemporary Issues in Bioethics 355 (Tom L. Beauchamp & LeRoy Walters eds., 1994) (outlining and discussing a form
specifying treatment to be administered in different situations). While useful aids in clarifying patients’ intentions, there is reason
to be skeptical about advanced directives as a cure-all. See, e.g., Beauchamp & Childress, supra note 27, at 129-32 (discussing the
problems with advance directives, including the philosophical assumption of continuity of the “self” over time).
115 See, e.g., T.P. Gallanis, Write and Wrong: Rethinking the Way We Communicate Health Care Decisions, 31 Conn. L. Rev. 1015,
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1026 (1999) (estimating the use of advance directive in the community of terminally ill patients at 15%).
116 See Dubler & Nimmons, supra note 11, at 125:
Neither ethical theory nor legal practice has caught up to the reality of modern medical care: the vast majority of patients who are
debilitated from illness cannot make their own decisions and have no formally identified surrogate. Even in states with
family-surrogate laws, informal surrogates are far more common than are clearly appointed and legally empowered deciders.
117 Id.
118 But see supra text accompanying note 76 for a suggestion of how the time pressure of the situation might be reduced.
119 Joint National Commission on Health Care Alternative Dispute Resolution, A Due Process Protocol for the Resolution of Health
Care Disputes, reprinted in Roderick B. Mathews, Rx For Managed Care: New Protocols Seek to Assure Consumers a Fair
Process in the Resolution of Disputes in the Health Care Industry, Disp. Resol. Mag., Spring 1999, 14 at 14, 15. The 24-hour
window for acute emergencies may be a bit on the low side.
120 Ury et al., supra note 77, at 10.
121 See, e.g., Dubler & Nimmons, supra note 11, at 31 (suggesting that hospitals tend to over-treat patients for fear of being sued by
family members); id. at 54:
[The office of risk management’s] task is straightforward: to keep the hospital out of court and free of potential liability that could
bankrupt it. In the long run, that is a good thing for everybody: bankrupt hospitals cannot stay in the business of providing
essential care. But the risk to the hospital is not only economic. Even a lawsuit that does succeed in a court of law costs the
hospital clearly in the court of public opinion and damaged community relations, in the ill will and bad feelings it generates, in
anxiety and distrust for employees and potential patients, and in time lost from the business of caring for the sick. That is why risk
management works very hard to make sure the hospital avoids all lawsuits--those that they could win as well as those that they
could not.
;Kimberlee K. Kovach, Neonatology Life and Death Decisions: Can Mediation Help?, 28 Cap. U. L. Rev. 251, 255-56 (2000)
(suggesting high amounts of deference to families’ wishes in end of life decision-making); see also James M. Gustafson, The
Johns Hopkins Case, in Contemporary Issues in Bioethics 413, 414 (Tom L. Beauchamp & LeRoy Walters eds., 1994), quoting a
doctor in a case similar to the Baby Brisay case study:
When posed the question of whether the case would have been taken to court had the child had a normal IQ, with the parents
refusing permission for the intestinal operation, the near unanimous opinion of doctors: “Yes we would have tried to override
their decision.” Asked why, the doctors replied: “When a retarded child presents us with the same problem, a different value
system comes in and not only does the staff acquiesce in the parent’s decisions to let the child die, but it’s probable the courts
would also.”
Notice how here the lumping behavior on the part of the hospital is in part a reflection of its potentially incorrect views of how the
court would rule. See also Shoshana K. Kehoe, Giving the Disabled and Terminally Ill a Voice: Mandating Mediation for All
Physician-Assisted Suicide, Withdrawal of Life Support, or Life-Sustaining Treatment Requests, 20 Hamline J. Pub. L. & Pol’y
373, 373-74, 376 (1999) (discussing how societal devaluation of the disabled contributes to coercion to end one’s life); cf. id. at
402 (observing that in the Dutch experience “[t]he legalization of physician-assisted suicide has placed an enormous amount of
autonomy into the hands of doctors and consequently, has taken the decision-making process out of patients’ control.”);
Beauchamp & Childress, supra note 27, at 166-70 (discussing ways that doctors pressure patients into making certain decisions,
and recognizing an “Obligation to Abstain from Controlling Influence”). Perhaps the best (though highly imperfect) indicia of
lumping in hospitals is the small number of cases that are actually litigated compared to the almost daily nature of bioethical
disputes.
122 See Ury et al., supra note 77, at 9-11.
123 See id. at 11 (“All dispute resolution procedures carry transaction costs: the time, money, and emotional energy expended in
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disputing, the resources consumed and destroyed, and the opportunities lost”).
124 See, e.g., id. at 18.
125 See, e.g., Max Douglas Brown, Rush Hospital’s Medical Malpractice Mediation Program: An ADR Success Story, 86 Ill. B.J.
432, 440 (1998) (describing St. Luke’s Hospital in Chicago’s mediation of malpractice suits, and finding it cost effective since
settlement amounts remained constant, number of suits declined slightly, and defense costs declined significantly); see also
Edward A. Dauer et al., Transformative Power: Medical Malpractice Mediations May Help Improve Patient Safety, Disp. Resol.
Mag., Spring 1999, at 9 (reviewing successful pilot malpractice mediation programs in Massachusetts and Toronto). One might
think that the low incidence of end of life court challenges would make the savings from an ADR program minimal, but the claim
this article made earlier was a low incidence of suits seeking judicial relief to enjoin withdrawal of care (or to force withdrawal),
malpractice suits regarding the results of an end of life decision that was made, especially in the neonatal field where many states
recognize a “wrongful life” tort, are plentiful, and use of the ADR processes to reach these decisions ex ante will likely lead to a
decrease in malpractice suits pursued ex post. See also Marcus & Dauer, supra note 58, at 3, 6 (observing more generally about
the health care context that “[a]s we know, early dispute resolution--mediation, interest-based negotiation and consensus
building--can avert what could ultimately become a source of service disruption, personal and professional angst, and avoidable
costs.”)
126 Of course, many critical legal scholars would argue that this is no different from any other judicial decision-making, in the sense
that attempts to “find the law” are bunk, since law’s morality almost always terminates in more than one choice, and choosing
between them depends on “free morality,” that is, an individual judge’s political and moral commitments. See, e.g., Jerome Frank,
What Courts Do in Fact, 26 Ill. L. Rev. 645 (1932) (arguing that judges “start by deciding how they want a case to come out and
then write an opinion twisting existing precedent to lead to that outcome”); Karl E. Klare, The Law School Curriculum in the
1980s: What’s Left?, 32 J. Legal Educ. 336, 340 (1982) (“This claim about legal reasoning--that it is autonomous from political
and ethical choice--is a falsehood ... Legal reasoning exists primarily as an array of highly stylized modes of justificatory
rhetoric”); Karl N. Llewellyn, supra note 33 (classically arguing that most cases terminate in a choice between two or more
equally plausible holdings, and judges “make” not “find” the law). Whether or not the Crits are correct, what differentiates end of
life legal decision-making is the absence of a veneer of objectivity and legal logic. To formulate it as the Crits would, with end of
life decision-making in areas of competence the “noble lie” is particularly unpersuasive. Cf. Alan Stone, Law, Psychiatry and
Morality 60-64 (1984) (arguing that psychiatry as a field has pretensions of escaping “morality” in favor of the “objective” realm
of science, but in fact is extremely value-laden); Thomas Szasz, The Myth of Mental Illness (1974) (canonical work on mental
illness as value-laden social construct).
127 See Menkel-Meadow, supra note 19, at 8. See also supra note 20.
128 Fisher et al., supra note 61, at 81-95.
129 See generally Ury et al., supra note 77 (evincing a strong preference for interest based negotiation over rights and power contests,
with some caveats noted). This theme also seems present in Getting to Yes, but there stands somewhat in tension, at least on the
surface, with the emphasis on legitimacy and objective criteria for bargaining.
130 Christine J. Perkins, Ethical Issues in Geriatric Psychiatry Liaison, in Geriatric Consultation Liaison Psychiatry 337, 339 (Pamela
Melding & Brian Draper eds., 2001).
131 Paul Appelbaum & Loren Roth, Competency to Consent to Research: a Psychiatric Overview, reprinted in Law and the Mental
Health System: Civil and Criminal Aspects 850, 850 (Ralph Reisner et al. eds., 1999) (discussing competency and consent to
treatment in the context of therapeutic research, i.e., research in which the patient receives treatment).
132 Id.
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133 See id. (“There are occasions, however, in which the communication from the subject will be so ambiguous as to raise serious
questions about whether or not consent has occurred. These include cases in which the subject’s verbal and behavioral responses
diverge.”).
134 See, e.g., Beauchamp & Childress, supra note 27, at 134; Perkins, supra note 130, at 340.
135 Beauchamp & Childress, supra note 27, at 134.
136 Id. at 133, 137. See also Appelbaum & Roth, supra note 131. A popular proposal has been not to use a single competency
standard, but rather to employ a “sliding scale” approach to competency, requiring a greater showing of competency to consent to
risky treatment. See, e.g., Perkins, supra note 130, at 343 (reviewing proposals to use a high “appreciation” standard for refusal of
treatment in life-threatening situations). Such an approach might counsel adopting a very strict test for competency when a patient
refuses life-prolonging treatment. See Alan M. Stone, Psychiatry’s Undiscovered Country, 151 Am. J. Psych. 953, 954 (observing
that depression is under-diagnosed and under-treated). Beauchamp and Childress, however, have criticized this approach,
suggesting that it conflates the question of a patient’s capacity with the strength of society’s paternalistic interest in overriding a
patient’s judgment. They argue that a “sliding scale” may be appropriate, but ought to slide in relation not to perceived risk, but to
the complexity of the decision. See Beauchamp & Childress, supra note 27, at 138-42.
137 See, e.g., Barbara Secker, Labeling Patient (In)Competence: A Feminist Analysis of Medico-Legal Discourse, 30 J. Soc. Phil.
295, 296 (1999) ( “The controversy surrounding the concept of competence stems not from disagreement about its core definition
(which in health settings, is ‘the ability to make a decision’), but, rather, from disagreement over the acceptability and
interpretation of material criteria proposed to develop, or to fill out, this definition.”).
138 Perkins, supra note 130, at 340. But see Appelbaum & Roth, supra note 131, at 852 (“Legal rules concerning contractual and
testimonial capacity traditionally have recognized at least one defect of rationality, the presence of ‘insane delusions,’ as grounds
for invalidating a person’s acts.”).
139 See Appelbaum & Roth, supra note 131, at 852 (“The subjective nature of any assessment of rationality frequently has been
pointed to as a major obstacle to the successful use of such a test. But an even greater problem may lie in the consensus of most
experts today that an impairment of rationality does not necessarily affect global decision-making ability, that is, that the impact
of delusions, for example, may be limited to a discrete area of mental functioning.”).
140 See, e.g., Beauchamp & Childress, supra note 27, at 138.
141 Id.
142 Duncan Kennedy, Distributive and Paternalistic Motives in Contract and Tort Law, with Special Reference to Compulsory Terms
and Unequal Bargaining Power, 41 Md. L. Rev. 563, 644 (1982). But see Perkins, supra note 130, at 339-40 (“Capable people are
able to make decisions based on their values, goals, knowledge, and understanding of the issues facing them. Apparently
‘inappropriate’ choices, idiosyncracy, or eccentricity, are not adequate reasons for declaring people incapable”).
143 See James V. Lavery et al., Origins of the Desire for Euthanasia and Assisted Suicide in People with HIV-1 or AIDS: A
Qualitative Study, 358 The Lancet 362 (noting high concurrence of depression among persons with AIDS); cf. Stone, supra note
126, at 953 (noting that depression is underdiagnosed and undertreated, creating a problem for refusal of life-saving treatment).
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144 E.g., Shelley E. Taylor, Positive Illusions: Creative Self-Deception and the Healthy Mind 214 (1989); Richard Birke & Craig R.
Fox, Psychological Principles in Negotiating Civil Disputes, 4 Harv. Negot. L. Rev. 1, 20 n.84 (1999).
145 Stone, supra note 126, at 953-54.
146 See ABA, National Benchbook on Psychiatric and Psychological Evidence and Testimony 84 (John W. Parry ed., 1998):
More so, perhaps, than any other treatment decision on whether to accept life-sustaining care depends as much or more on what
the individual believes about death and dying than on the risks and benefits of choosing life-sustaining treatment. Because
decisions about dying are subjective, courtroom determinations focus, in large part, on what the patient wants or would want if
competent to make a decision ... Answers to these questions, however, become particularly sensitive and complicated when the
patient has a mental disability ....
147 Secker, supra note 137, at 297.
148 Id.
149 See id.
150 Perkins, supra note 130, at 341.
151 Dubler & Nimmons, supra note 11, at 108-12.
152 Id. at 112-13.
153 Id. at 113.
154 See, e.g., Lavery et al., supra note 143.
155 Arthur W. Frank, At the Will of the Body 50-54 (1991).
156 See supra notes 42-43 and accompanying text discussing the Cruzan courts dismissal of “Nancy’s authentic voice.”
157 Dubler, supra note 83, at 8.
158 Ellen A. Waldman, The Evaluative-Facilitative Debate in Mediation: Applying the Lens of Therapeutic Jurisprudence, 82 Marq.
L. Rev. 155, 158-59 (1998).
159 Bruce J. Winick, The Jurisprudence of Therapeutic Jurisprudence, in Law in a Therapeutic Key: Developments in Therapeutic
Jurisprudence 645, 646 (David B. Wexler & Bruce J. Winick eds., 1996).
160 See supra text accompanying notes 147-53.
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161 See Lavery et al., supra note 143, at 365.
162 See, e.g., id.; Anissa C. Werner, Note, The Michigan Legislature Persists in Prohibiting Assisted Suicide, 77 U. Det. Mercy L.
Rev. 875, 879 (2000).
163 On the flip side, however, there is reason to fear that depressed patients will not be capable of negotiation. See Hoffmann, supra
note 55, at 865. What ought an ADR model do in this case? The answer will depend heavily on the actual facts. One approach is
to declare these cases unfit for the ADR process and proceed directly for litigation. Another approach is to attempt to appoint a
guardian or some other surrogate to represent the patient in the ADR processes. Here, there are concerns about agency, not in the
usual sense that the agent’s incentives are misaligned with the principle’s, see Mnookin et al., supra note 61, at 69-93 (discussing
the principle-agent tension and ways to manage it), but rather that the agent does not know what the principle wants or, rather,
operates from a kind of metaphysical assumption about what the “real” patient would want if she weren’t depressed. One other
possible solution is to treat with Selective Serotonin Reuptake Inhibitors (SSRIs) or other antidepressants during the ADR process
to enable the patient to negotiate fully (although here there may be refusal of treatment issues as to the antidepressants). Because
the level of depression we are talking about in this hypothetical is fairly severe, and because the issues involved are so thorny,
further development of this problem will not be undertaken in this article.
164 Menkel-Meadow, supra note 19, at 26-27.
165 See, e.g., Fisher et al., supra note 61, at 154-56; Ury et al., supra note 77, at 14:
Reconciling interests thus tends to generate a higher level of mutual satisfaction with outcomes than determining rights or power.
If the parties are more satisfied, their relationship benefits, and the dispute is less likely to occur. Determining who is right or who
is more powerful, with the emphasis on winning and losing, typically makes the relationship more adversarial and strained.
Moreover, the loser frequently does not give up, but appeals to a higher court or plots revenge.
166 In re Guardianship of Schiavo, 851 So. 2d 182 (Fla. Dist. Ct. App. 2003), review denied sub nom. Schindler v. Schiavo, 855 So.
2d 621 (Fla. 2003); Goodnough, supra note 3, at A1.
167 See Hoffmann, supra note 55, at 825.
168 See Dubler & Nimmons, supra note 11, at 130-34, discussing a case study of
a nursing home resident who refused dialysis and regularly fought off his nurses and doctors, ripping out dialysis and intravenous
tubes ... the week before had torn out an intravenous needle and almost bled to death ... If the dialysis team didn’t dialyze him, he
would slip into a coma and die of uremic poisoning in a matter of weeks. But to do so would require the nurses to “snow and
snug” him--sedating, then bodily restraining him for twice-weekly dialysis treatments. As grim a prospect as that would be for
[the patient], it would be devastating for his care team. They were tremendously conflicted about feeling like medical thugs, tying
down and drugging this patient as he struggled and kicked--all to save a life he didn’t seem to want to be saved.
169 See generally Douglas Stone et al., Difficult Conversations (2000).
170 See Hoffmann, supra note 55, at 825.
171 See, e.g., Laura E. Little, Emotion and Adjudication, 3 Fla. Coastal L.J. 205 (2002) (observing that the judicial process continues
to hide the role of emotion in adjudication despite overwhelming evidence to the contrary); see also Martha C. Nussbaum, Secret
Sewers of Vice: Disgust, Bodies, and the Law, in The Passions of Law 19 (Susan A. Bandes ed., 1999) (arguing that the emotion
of “disgust” plays a major role in judicial deciding of obscenity cases, the eligibility of certain crimes for the death penalty, and
other cases, and criticizing that role).
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172 To be clear, one can intend to kill another human being, or it can be unintentional, but for a given intentional killing there can be a
number of different emotions motivating it (hatred, greed, fear, etc.). There are, of course, a few cases where the lines between
intention and emotion do blur. Increased penalties for hate crimes is a good example. While some try to analogize it to increased
penalties for “cop-killing,” trying to fit it into the intentionality category by arguing that what is being criminalized is your
intention to “kill x because he is a member of group y,” underlying the increased penalty is arguably some adjudication of
emotion. See Wisconsin v. Mitchell, 508 U.S. 476 (1993) (upholding Wisconsin’s hate crime legislation as constitutional);
Lawrence Tribe, The Mystery of Motive, Private and Public, 1993 Sup. Ct. Rev. 1 (analyzing the case). Other examples might
include the Extreme Emotional Disturbance defense, and the closely related heat of passion mitigator for murder. Outside of the
criminal context, however, it is hard to think examples of cases where emotions do matter. Assessing penalties (whether criminal
sentences or punitive damages) might be such an example, but it is sufficiently different in that it determines the attendant
response by society, implicating the retributivist emotional function, rather than whether culpability lies. All this is to say that
official judicial cognizance of emotions is the exception and not the rule in the American legal system.
173 Stone et al., supra note 169, at 87.
174 See, e.g., Rita Lowery Gitchell & Andrew Plattner, Mediation: A Viable Alternative to Litigation for Medical Malpractice Cases,
2 Depaul J. Health Care L. 421, 424 (1999) (speaking favorably about mediation’s ability to allow parties to deal with issues
relevant to them including emotions, not the issues that a court finds relevant, in the medical malpractice setting); see also Craig
A. McEwen & Richard J. Maiman, Small Claims Mediation in Maine: An Empirical Assessment, 33 Me. L. Rev. 237, 245-60
(1981) (“linking high satisfaction levels to parties’ perception of ‘processual advantages’ including: opportunities for free
expression of emotions and feelings, closer attention to a range of issues dividing the parties, full involvement of the parties in
shaping the agreement and reduction of polarization between parties--all of which tend to produce higher rates of compliance ...”).
175 See Stone et al., supra note 169, at 90-101.
176 Note how this echoes our earlier discussion of how end of life patients are stripped of their autonomy.
177 See Stone et al., supra note 169, at 91-92.
178 See id. at 92-93.
179 Which, as we have suggested, is itself a notoriously difficult inquiry. See supra text and accompanying notes 130-53.
180 Stone et al., supra note 169, at 96-97.
181 See id. at 100.
182 See id.
183 See id. at 97-98 (discussing how emotions can lead us to make attributions about people’s intentions and judgments about people
and their motives). For an introduction to the role of cognitive dissonance in negotiation, see Robert H. Mnookin and Lee Ross,
Introduction, in Barriers to Conflict Resolution 3, 10-19 (Kenneth J. Arrow et al. eds., 1995) (identifying as barriers: equity
seeking behavior, construal biases, reactive devaluation, loss aversion, judgmental overconfidence, and cognitive dissonance).
184 Stone et al., supra note 169, at 100:
Next, we need to explore our assumptions about the other person’s intentions. To what extent are our feelings based on an
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untested assumption about their intentions? Might the other person have acted unintentionally, or from multiple and conflicting
intentions? How does our view of their intentions affect how we feel? And what about our own intentions? What was motivating
us? How might our actions have impacted them? Does that change how we feel?
185 Id. at 102-06.
186 Id. at 106 (“[a]cknowledgement is a step that simply cannot be skipped”).
187 For a good definition of “acknowledgement” see id.:
What does it mean to acknowledge someone’s feelings? It means letting the other person know that what they have said has made
an impression on you, that their feelings matter to you, and that you are working to understand them.
188 See supra text and accompanying notes 126-29 and sources cited therein.
189 Gustafson, supra note 121, at 413.
190 Leonard J. Marcus, Renegotiating Health Care 27-28 (1995).
191 Gustafson, supra note 121, at 414 (omissions in original).
192 See, e.g., Keyserlingk, supra note 32, at 111 (“[O]ne discovers there are no grounds for the view that the principle [of sanctity of
life] demands that human life must always be ‘aggressively’ maintained, no matter what the damage or prospects for recovery.”)
193 Christine K. Cassell, Physician-assisted Suicide: Progress or Peril?, in Birth to Death: Science and Bioethics 218, 224 (David C.
Thomasma & Thomasine Kushner eds., 1996).
194 Id.
195 See Stone et al., supra note 169, at 111-21.
196 Stone and his colleagues call this step “Become aware of your Identity Issues.” Id. at 116.
197 Id. at 118-19.
198 Edmund D. Pellegrino, Euthanasia as a Distortion of the Healing Relationship, in Tom L. Beauchamp & James F. Childress,
Principles of Biomedical Ethics 483 (4th ed. 1994).
199 Hoffmann, supra note 55, at 862-63.
200 See, e.g., Marcus, supra note 190, at 244 (discussing the shift to capitated reimbursement as important for the transition in the
state of the profession but qualifying it by saying, “this angle alone tells only part of the story,” and adding as explanatory of the
transitions changes to the interpersonal working relationships and organizational structure of hospitals); Marcus & Dauer, supra
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note 58, at 3-4 (discussing managed care’s effects on conflict resolution in health care).
201 See Cathy A. Constantino & Lewis K. Schrager, Physician, Heal Thyself: Changed Role of Health Care Professionals Calls for
Conflict Management Skill, Disp. Resol. Mag., Spring 1999, at 12 (discussing the increasing importance of negotiation training
for doctors and pilot programs to train doctors in these skills).
202 See Menkel-Meadow, supra note 19, at 9-10.
203 See, e.g., James K. Sebenius, Sequencing to Build Coalitions: With Whom Should I Talk First?, in Wise Choices: Decisions,
Games, and Negotiations 324, 324-25 (Richard J. Zeckhauser et al. eds., 1996) (discussing sequencing).
204 See, e.g., Lawrence Susskind & Gerard McMahon, The Theory and Practice of Negotiated Rulemaking, 3 Yale J. on Reg. 133
(1985); Jody Freeman & Laura I. Langbein, Regulatory Negotiation and the Legitimacy Benefit, 9 N.Y.U. Envtl. L.J. 60 (2000);
Philip Harter, Negotiating Regulations: A Cure for Malaise, 71 Geo. L.J. 1 (1982).
205 See, e.g., Ury et al., supra note 77, at 51 (discussing risk of rights forfeiture).
206 See Hoffmann, supra note 55, at 865-66.
207 See Cassell, supra note 13, at 37-38. See also Beauchamp & Childress, supra note 27, at 166-70 (discussing ways that doctors
pressure patients into making certain decisions, and recognizing an “Obligation to Abstain from Controlling Influence”).
208 See, e.g., Kehoe, supra note 121, at 375 (discussing subtle coercion by families in the euthanasia and physician-assisted suicide
context); id. at 393-97 (discussing how the shift in societal attitudes has caused more pressure to refuse life-prolonging treatment).
209 See generally supra note 8 and sources cited therein.
210 See supra text and accompanying notes 120-25.
211 See supra note 121.
212 Cf. Edwards, supra note 92, at 682 (“the option of ultimate resort to adjudication is essential”). In regards to parties ADR might
also be seen to threaten “due process” in that ADR gives parties to whom the courts would not accord a legitimate stake in the
outcome a seat at the table. See Hoffmann, supra note 55, at 867. Hoffmann, for instance, notes that it may allow peripheral
family members or family members who have not spent a lot of time with the patient the same role as more central family
members. Id. Conversely we might say this is an advantage of ADR because even if such persons are “peripheral” from a legal
standpoint, they have the opportunity to be “spoilers” from a practical standpoint, and it is better to involve them in the ADR
process so they have a sense of investment/ownership in the result.
213 See Mathews, supra note 119, at 7; Joint National Commission on Health Care Alternative Dispute Resolution, supra note 119, at
15 (including, inter alia, a right to a “fundamentally fair process,” a requirement of knowing and voluntary consent to ADR and a
prohibition on conditioning emergency treatment on agreeing to ADR, a right to an independent neutral in the choice of whom all
the parties have an equal say, a right to a fair hearing with adequate notice and the opportunity to present relevant evidence and
cross-examine witnesses).
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214 See Hoffmann, supra note 55, at 828-29, 829 n.31; see also Dubler & Nimmons, supra note 11, at 130-34 (discussing an example
of such a case, and the role of the risk management department in forcing an adjudicatory determination).
215 Cf. Ury et al., supra note 77, at 16 (“In some disputes, the parties cannot reach agreement on the basis of interests because their
perceptions of who is right or who is more powerful are so different that they cannot establish a range in which to negotiate. A
rights procedure may be needed to clarify the rights boundary within which a negotiation can be sought”).
216 See Constantino & Sickles Merchant, supra note 90, at 43 (“It may also be inappropriate to require the disempowered to use ADR
mechanisms where they have been given no choice in the matter, do not understand their rights and choices for alternative relief,
or have had no hand or representation in creating the dispute resolution mechanisms in the first place”).
217 See generally Washington v. Glucksberg, 521 U.S. 702 (1997) (holding Washington’s prohibition against causing or aiding a
suicide did not violate the Due Process Clause); Vacco v. Quill, 521 U.S. 793 (1997) (holding New York’s prohibition on
assisting suicide did not violate the Equal Protection Clause of the Fourteenth Amendment); Compassion in Dying v. Washington,
79 F.3d 790 (9th Cir. 1996) (finding the right to die as falling into the category delineated by Planned Parenthood v. Casey of
“matters, involving the most intimate and personal choices a person may make in a lifetime, choices central to personal dignity
and autonomy, are central to the liberty protected by the Fourteenth Amendment”); Nancy B. v. Hotel Dieu de Quebec, 86 D.L.R.
4th 385 (1992) (Canadian Supreme Court orders the hospital to remove a respirator from a competent patient whose life depended
on the respirator but who now asked for its removal because she wanted to die).
218 See generally Roselle L. Wissler, The Effects of Mandatory Mediation: Empirical Research on the Experience of Small Claims
and Common Pleas Courts, 33 Willamette L. Rev. 565 (1997) (reviewing empirical research on mandatory mediation and finding
more negative rating by participants and defense attorneys of mandatory versus voluntary mediation in terms of fairness, although
not finding other predicted shortcomings of mandatory mediation); see also Wayne D. Brazil, For Judges: Suggestions About
What to Say About ADR at Case Management Conferences--and How to Respond to Concerns or Objections Raised by Counsel,
16 Ohio St. J. on Disp. Resol. 165, 190-91 (2000):
I do not believe that federal judges should use that discretionary power to order a litigant ... to go through an ADR process. If the
purpose of the ADR referral would be to encourage settlement, then that purpose very likely would be frustrated. If the purpose of
the referral would be to enhance party self-determination, then that purpose already has been achieved, by hypothesis, for this
particular litigant: he has self-determined that he wants his dispute resolved by trial. As emphasized above, there are many other
purposes or values that an ADR referral might promote, but it is not clear enough to me that forcing a party with this considered
view to participate in ADR is likely to contribute enough to the achievement of any of those other purposes to justify the
disrespect for his constitutionally rooted position that would be reflected in an order compelling him to participate in ADR.
See also Steven H. Goldberg, ‘Wait a Minute. This Is Where I Came In.‘ A Trial Lawyer’s Search for Alternative Dispute
Resolution, 1997 BYU L. Rev. 653, 664 (1997) (noting “the theoretical inconsistency of mandating a process based on consensual
participation” in court-annexed arbitration).
219 See supra text accompanying note 118. To be clear, the argument this article is making is that when parties are determined to
pursue litigation and are actively hostile to ADR, it is not a good use of time.
220 Mathews, supra note 119, at 14.
221 Joint National Commission on Health Care Alternative Dispute Resolution, supra note 119, at 15.
222 See Brown, supra note 125, at 433-34.
223 See, e.g., Gilmer v. Interestate/Johnson Lane Corp., 500 U.S. 20, 33 (1991) (noting that agreements to arbitrate will be held to the
same standards as regular contracts); cf. Mitsubishi v. Solers, 473 U.S. 614, 627 (1985) (“Of course, courts should remain attuned
to well-supported claims that the agreement to arbitrate resulted from the sort of fraud or overwhelming economic power that
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would provide grounds ‘for the revocation of any contract.”’ (quoting 9 U.S.C. § 2 (2000)).
224 This is true even though Step 3’s arbitration process is not binding on the patients. Having registered a preference for voluntary
agreements, it is worth noting that a non-binding arbitration process probably does not run afoul of constitutional due process
protections, and is rejected more on prudential than constitutional grounds.
225 See generally Ury et al., supra note 77; see also id. at 18 (“the challenge for the systems designer is to turn the pyramid
[representing the typical course of dispute resolution outside of ADR] right side up. It is to design a system that promotes the
reconciling of interests but also provides low-cost ways to determine rights or power for those disputes that cannot or should not
be resolved by focusing in interests alone.”).
226 See id. at 52.
227 See id. at 52-54.
228 See id. at 54-56.
229 What might a power-based move look like in this context? One example would be the hospital going ahead and performing the
operation to correct Baby Brisay’s duodenal atresia notwithstanding her parents’ objections. This is different from seeking a court
order to empower them to do so which would be a form of rights-based resolution. An example of a power-based move against
the hospital would be, for example, Mrs. Smith’s son removing his mother’s nasogastric tube or disconnecting her ventilator.
230 Ury et al., supra note 77, at 61-62.
231 Constantino & Sickles Merchant, supra note 90, at 129.
232 See generally id. at 121.
233 See id. at 73-76.
234 See id. at 73-74.
235 See Constantino & Sickles Merchant, supra note 90, at 74-76.
236 All these questions are discussed more fully in id. at 106-12.
237 See, e.g., Freeman & Langbein, supra note 204, at 72.
238 See id. at 72.
239 See id.
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240 See generally id. at 75-81 (reviewing the empirical literature).
241 Lawrence Susskind, Reg-Neg, Lecture at the Harvard Interdisciplinary Negotiation Research Seminar (Sept. 13, 2001).
242 Freeman & Langbein, supra note 204, at 82.
243 See Michelle LeBaron & Nike Carstarphen, Negotiating Intractable Conflict: The Common Ground Dialogue Process and
Abortion, 13 Negot. J. 341 (1997) (describing a project to mediate discussions about abortion between pro-choice and pro-life
advocates). LeBaron and Carstarphen offer the following as “ground rules” for such discussions: “respectful speech and behavior
toward all in attendance, speaking for oneself, an expressed desire to understand and be understood, a pledge to refrain from
attempts to convert or convince, and confidentiality, meaning that no names will be ascribed to anything that is said during the
workshop.” Id. at 343-44. Such rules would probably be useful in Step 0.
244 To use a gross example, an appropriate guideline for a U.S. hospital will look quite different from one in the Netherlands, just
based on differing attitudes the two cultures take to death and dying. See also supra note 8 and the sources cited therein. If a
hospital associates itself with a particular faith, for instance a strongly Catholic hospital that still maintains the ordinary versus
extraordinary care distinction discussed above, supra notes 26-30, it may want to build in some limitations on what its
practitioners are willing and not willing to do, so that the Zone of Possible Agreement will be smaller.
245 See supra text and accompanying notes 214-215.
246 See supra text and accompanying notes 169-191.
247 See supra text and accompanying notes 191-203.
248 See Constantino & Schrager, supra note 201, at 12-13 (describing some pilot training programs at George Washington University
for public health students, teaching interest-based negotiation, ethical issues around conflict negotiation, using simulations, etc.).
249 Ury et al., supra note 77, at 78.
250 Id. at 78-79. Ury and his colleagues mention that such “coaching” can occur on the phone. This may be a more realistic option for
some of these disputes.
251 See also Constantino & Sickles Merchant, supra note 90, at 135-36 (refuting the notion that all participants need the same level of
negotiation training, and arguing for “targeted” training).
252 Id. at 142-44.
253 Id. at 143-44.
254 Id. at 144.
255 Constantino & Sickles Merchant, supra note 90, at 144-45.
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256 Id. at 145-46.
257 Dubler, supra note 83, at 8.
258 Id.
259 Id.
260 See, e.g., Ury et al., supra note 77, at 51 (discussing risk of right forfeiture).
261 See Hoffmann, supra note 55 at 849-50 (“Traditional mediators are accepted by the adversaries and exert influence because they
are seen as having no interest in the conflict beyond its peaceful resolution.”); id. at 855:
[one] procedural criticism of mediation is the belief that mediator neutrality will lead to fair outcomes. This criticism actually has
two components: (1) a concern that mediators are not, in fact, neutral and that their views and biases may influence the result; and
(2) that even if neutral, mediators cannot guarantee fairness, if they cannot enter into the conflict to correct power imbalances.
See also Joint National Commission on Health Care Alternative Dispute Resolution, supra note 119, at 15, Principle 4, suggesting
that:
[A]ll parties are entitled to a neutral who is independent and impartial ... Administration of the ADR program should be neutral
and independent of the parties ... Neutrals should be required to disclose to the administering agency any circumstance likely to
affect the impartiality, including any bias or financial or personal interest which might affect the result of the ADR proceeding, or
any past or present relationship or experience with the parties or their representatives including past ADR experiences.
262 One might argue that even the chaplain is too much of an insider. Another possibility would be to have an outside mediation
service not affiliated with the hospital. Although this would further comport with the appearance of impartiality, it would come
with a cost of less experience and less familiarity with a particular hospital’s policies and practices. In fact, use of an outside
service might give an illusion of impartiality, since a for-hire mediation service provider is likely to be more incentivized to side
with the hospital who will terminate its contract than the chaplain is. But see Joint National Commission on Health Care
Alternative Dispute Resolution, supra note 119, at 15, Principle 4 (“Administration of the ADR program should be neutral and
independent of the parties,” although these principles are designed more for disputes between patients, doctors, and their HMOs).
Use of an outside mediator also drives up the cost.
263 There is some hesitation that with a quite religious patient or family, the chaplain might wield too much influence, lest his
decision in a conflict be thought to represent the word of G-d.
264 Constantino & Sickles Merchant, supra note 90, at 133.
265 Id. at 46, 76-82; Ury et al., supra note 77, at 61, 69-74, 80-81.
266 See, e.g., Fiss, supra note 93, at 1075.
267 See, e.g., Hoffmann, supra note 55, at 849-50 (citing Penelope E. Bryan, Killing Us Softly: Divorce Mediation and the Politics of
Power, 40 Buff. L. Rev. 415, 450-51, 454 (1992)).
268 Richard Delgado et al., Fairness & Formality: Minimizing the Risk of Prejudice in Alternate Dispute Resolution, 1985 Wis. L.
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Rev. 1359 (1985).
269 Dubler, supra note 83, at 7.
270 Id. at 8.
271 Id.
272 Id. at 7.
273 Dubler, supra note 83, at 8.
274 Id.
275 Id.
276 Id.
277 Dubler, supra note 83, at 8.
278 Too little has actually been written on the applicability of arbitration to health care disputes outside the malpractice context. Both
Hoffmann, supra note 55, and Marcus, supra note 190, devote large parts of their work to mediation but mention arbitration only
parenthetically. Likewise, Dubler & Nimmons, supra note 11, do not discuss arbitration as a possibility.
279 Hoffmann, supra note 55, at 842 (noting that as of 1985, 60% of hospitals with more than 200 beds had ethics committees).
280 Id. at 842.
281 Id.
282 Id. at 847.
283 Hoffmann, supra note 55, at 843.
284 Id.
285 Id. at 844.
286 Id.
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287 Hoffmann, supra note 55, at 845-46.
288 Susan M. Wolf, Ethics Committees and Due Process: Nesting Rights in a Community of Caring, 50 Md. L. Rev. 798, 831 (1991).
289 Hoffmann, supra note 55, at 847.
290 Although this article decided not to frame it as its main recommendation, some form of “mediated-arbitration” (“med-arb”) might
be a lower cost way to achieve some of the benefits of arbitration. In med-arb the neutral who mediates the dispute also acts as
arbitrator when the mediation fails, offering a cheaper and quicker way of proceeding since a new arbitrator does not have to be
educated. Ury et al., supra note 77, at 56-57. In our model, the bioethical mediator at Step 2 could also serve as arbitrator of the
dispute when mediation fails. The parties, of course, would be notified at the outset that the bioethical mediator would arbitrate if
the dispute is not settled. The advantages of med-arb is that it encourages the parties to take the mediator’s suggestions more
seriously, knowing she may be called upon to ultimately decide, and it allows for issue separation in that the arbitrator will only
make a decision on issues the parties cannot settle themselves, keeping high-cost rights adjudication to a minimum. Id. at 57.
However, there are several downsides to employing med-arb here. Ury and his colleagues suggest that parties may either withhold
information that would be useful in mediating the dispute because it will hurt them in arbitration, or they will reveal information
that will bias the arbitrator or at least that they “perceive” the arbitrator could not ignore. Id. A different concern is the fear that
the arbitration element will poison the atmosphere of conciliation, although perhaps this is less salient when the arbitration will
not be binding. Finding an appropriate neutral will be more difficult in med-arb because she would need to be “inside” enough to
know the hospitals procedures and culture as well as gain the trust of the health care team, but “neutral” enough to give a
meaningful advisory arbitration. Finally, because of the informality of the process (not a lot of due process protections, the parties
are not represented by lawyers) there is a question of how good a substitute med-arb is for the rights-based adjudicatory model it
is supposed to proxy at a lower cost. Having said all that, med-arb might be a promising alternative for some hospitals. There is
no reason why it couldn’t also be a supplementary step falling between Steps 2 and 3.
291 If a more formal system is chosen, arrangements should be made to provide low-cost or free legal representation to indigent
patients. If the costs are not prohibitive, the hospital may want to consider employing a full-time “public defender” to represent
patients who are not indigent and want representation, but who would oppose seeking arbitration if they were forced to bear the
burden of hiring a lawyer for the process.
End of Document
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