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CONCEPTUAL AND MORAL DISPUTES
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A B O U T FUTILE A N D U S E F U L T R E A T M E N T S
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Key Words: futility, ethics, physician authority, consent
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When we ask if something is futile or useful, we need to inquire,
"Futile or useful for what?" In the medical, legal, and bioethics literature, questions about whether certain medical treatments are
useful or futile h a v e b e c o m e a focal p o i n t for m a n y l o n g - s t a n d i n g
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ABSTRACT. A series of cases have crystallized disputes about when medical
treatments are useful or futile, and consequently about the doctor-patient relationship, resource allocation, communication, empathy, relief of suffering, autonomy, undertreatment, overtreatment, paternalism and palliative care. It is helpful
to understand that utility and futility are complimentary concepts and that judgments about whether treatments are useful or futile in the contested cases have
common features. They are: (1) grounded in medical science, (2) value laden,
(3) at or near the threshold of utility, and (4) burdensome. No schema for linedrawing escapes borderline cases and we should focus upon justification of the
empirical, ethical and evaluative components underlying these judgments, rather
than make an arbitrary decision about whether doctors, patients or societal consensus should be the final arbiter.
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controversies. Frequently they erupt over how to understand and
rank traditional goals of medicine, such as duties to sustain life,
relieve suffering, comfort, or respond compassionately to people.
Also represented are disputes about professional, patient and surrogate autonomy, as well as concerns about good communication,
informed consent, resource allocation, undertreatment, overtreatment, and paternalism.
The debate has spilled out of hospitals and academic centers
nto t n e c o u r t s
i
where some people's cases serve as symbols of
these disputes including: Nancy Cruzan, a woman in a persistent
vegetative state (PVS) whose family wanted her feeding tube
removed (Cruzan v. Director Missouri Department of Health,
Loretta M. Kopelman, Ph.D., Department of Medical Humanities, School of Medicine,
East Carolina University, Greenville, North Carolina 27858-4354, U.S.A.
The Journal of Medicine and Philosophy 20:109-121,1995.
© 1995 Kluwer Academic Publishers. Printed in the Netherlands.
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Loretta M. Kopelman
CONCEPTUAL ISSUES
Judgments that treatments are medically futile or marginally
beneficial in these and other contested cases are marked by four
necessary conditions; they are:
1. grounded in medical science;
2. value laden judgments incorporating estimates about something's utility relative to some goal, or whether the achievable
goal is worth the effort;
3. near the threshold of, or borderline between, what is considered
useless or beneficial; and
4. physically, psychologically, or economically burdensome.
Examining these four features of judgments about marginally
beneficial or futile treatments in the contested cases will guide,
illuminate and enrich the moral debate over what ought to be
done in the contested cases. After examining these conditions, I
will consider some of their relations to disputes about how we
should decide when treatments are futile.
(1) Grounded in medical science. These contested cases about medically futile treatments arise in the context of standard medical
care, so stable scientific information must justify claims about
patients' diagnosis, treatment or prognosis. The likely effects and
utility of certain procedures relative to some goal must be medically grounded. Reliable information, for example, must support
assertions that procedures will prolong a life, restore sentience or
relieve pain.
The contested cases about what treatments are useful or futile fall
somewhere on a continuum between ideal treatments and utterly
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1990); Baby Doe, an infant with Down's Syndrome whose parents
did not want surgery to correct anomalies incompatible with life
(Kopelman et ah, 1992); Baby L, with multiple disabilities including blindness, deafness, quadriplegia, and arrested development
at the three-month-old level whose mother insisted on maximal
treatments (Paris, 1990); Helga Wanglie, a woman in a PVS whose
family said she wanted maximal treatment (Miles, 1991); and Baby
K, an infant with anencephaly whose mother insisted on maximal
treatments {In re K, 1994; Miller, 1994).
Conceptual and Moral Disputes about Futile and Useful treatments
111
futile interventions for certain conditions. Other points on this
continuum are standard, innovative and experimental therapies.
IDEAL THERAPY
UTTERLY FUTILE INTERVENTIONS
Consequently, as information changes, treatments once thought to
be at the threshold may be shown to be clearly beneficial or utterly
futile for certain conditions. Earlier disputes have been resolved
with greater information, for example, about the harmful effects of
frontal lobotomies to treat severe psychiatric disorders. Judgments
about the utility or futility of therapies in the contested cases,
then, must be supported by evidence and modified as the relevant
evidence changes.
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STANDARD
INNOVATIVE
EXPERIMENTAL
UNVERIFIED
CONTESTED AS MEDICALLY FUTILE
(2) Value laden judgments incorporating estimates about something's
utility relative to some goal, or whether the achievable goal is worth the
effort. These values may involve duties to honor someone's choice
or the prudent use of resources. Also, duties of beneficence (to do
good or prevent harm) shape the obligations of both professionals
and surrogates responsible for patients. For example, doctors have
a duty to provide therapies and part of the meaning of a therapy is
that it is intended to benefit someone. Disputed cases usually raise
troubling questions about what constitutes a benefit and how to
fulfill these duties. Often it is unclear how to understand or rank
such important values as sustaining a life, providing appropriate
treatments, relieving suffering, or being compassionate. In addition, values are needed to allocate resources fairly and set reasonable thresholds between futile interventions and experimental,
innovative or standard treatments (Kopelman, 1993b).
(3) Near the borderline between what is considered useless or beneficial.
Judgments about what treatments are useful or futile in the disputed cases are not about procedures that are unquestionably
futile, such as whether to provide laetrile to treat cancer or ortho-
112
Loretta M. Kopelman
(4) Physically, psychologically, or economically burdensome. These con-
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pedic shoes to patients in a PVS. Rather, the contested treatments
generally serve some purpose, but its overall benefits are disputed. For example, some assert and others deny the value of
using intensive care to support the life of someone in a persistent
vegetative state. The problem of distinguishing what is useful and
futile cannot be solved by a different borderline, since no matter
what threshold is selected there will always be borderline and
hence contested cases. To complicate matters, the judgment that a
treatment is useful or futile is often an amalgam of assessments of
different burdens and benefits as measured on different parameters. For example, what is useful to relieve suffering may compromise respiratory function; and what is futile to prolong life for
more than a few days may be useful so a family may gather for a
death. Consequently, to say that there is no duty to provide futile
treatments is an unhelpful guide in the borderline case because
what is contested is whether they are futile.
tested cases are about physically, psychologically or financially
burdensome treatments, and burdens and benefits may be judged
in two different ways. Noncomparative judgments consider only
what treatments are in the best interest of an individual patient. In
contrast, comparative judgments examine whether what is allegedly
best for an individual patient is the best use of goods, services or
benefits, given the needs of others (Buchanan and Brock, 1989).
Noncomparative quality-of-life judgments consider only the
value of the life to the patient in question. Often disputes arise in
the contested cases about how to rank traditional goals of medicine such as sustaining life, with relieving terrible and uninterrupted pain caused by the technologies sustaining life. These cases
are especially difficult when patients cannot direct decisions about
what is in their best interest and professionals and surrogates dis>
»
agree about what constitutes undertreatment or overtreatment.1
The best-interest standard cannot always generate reliable agreement in deciding what ought to be done even when carefully circumscribed to noncomparative estimates about the quality of the
person's life for that individual (Buchanan and Brock, 1989;
Kopelman, 1993a).
*
One recurring aspect of the debate over when treatments are
useful or futile concerns whether noncomparative judgments to
!
assess futility should be separated from comparative judgments •>
Conceptual and Moral Disputes about Futile and Useful treatments
113
WHO DECIDES?
Ideally, health care choices should represent a socially acceptable
consensus among doctors, nurses, and patients or their surrogates
about what treatment plan is reasonable and best suited to the
patient (President's Commission, 1982). In contested cases, however, the ideal cannot be fulfilled; and, choices about what ought
to be done are frequently framed in terms of who has the authority to decide. Three main proposals give authority in the contested
cases to different persons, appealing to:
1. physician autonomy,
2. patient or surrogate autonomy,
3. social consensus.
(1) Physician autonomy. According to this view, physicians should
have unilateral authority to judge what treatments are futile in
contested cases. For example, if a therapy is deemed quantatively
futile, or has failed for the last one hundred attempts then defenders of this view hold that doctors can conclude it is futile for those
conditions and decide unilaterally not to recommend it as an
option or to provide it if requested.2 There are two very different
justifications of this view. Reductionist versions hold doctors should
have unilateral control of decisions in the contested cases because
these disputes are quantifiable or reducible to factual claims in
their area of expertise. Decisions about what ought to be done in
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about how to use goods, services or benefits. Writing in this
volume, Robert A. Gatter, Jr. and John C. Moskop (1995) doubt
whether we can generate a social consensus to resolve the contested cases. They argue instead for reliance upon a triage model
to help decide which treatments to provide in contested cases. By
assessing resources available to a community, the demands upon
it, and its social priorities, Gatter and Moskop believe that a reasonable consensus can be achieved about how to allocate public
resources for health care. Under this scheme, some preferences for
marginally beneficial and costly treatments probably will not be
honored unless people can pay for such treatments themselves.
The benefits of this model, the authors argue, are that it can be
implemented on the community level and incorporate consideration of other needs within the community.
114
Loretta M. Kopelman
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the contested cases, on this view, are definable by information that
something has not worked or will not be efficacious. One
difficulty for this view is sometimes the cases are contested because
there have not been many similar cases reported against which to
judge. A more fundamental difficulty is that, as the 18th century
philosopher David Hume (1777) observed, one cannot get a conclusion about what one ought to do from premises stating what is
the case. In short, this version commits the naturalistic fallacy.
This reductionist version should be distinguished from a more
defensible justification of unilateral decision-making by physicians. To differentiate it from the reductionist version, I call it the
clinical equipoise version? This approach holds that the members of
the medical profession form a community of experts that employs
established professional goals and values along with the best
information to determine when treatments are useless or futile for
certain conditions. The judgment of a particular physician might
be unjustifiable, but the focus should be on what the community
of experts believe to be futile or useful care. On this view, doctors
should maintain authority to refuse to do what they consider futile.
This approach to decision-making authority has received social
support in countries such as the United Kingdom. For example,
The Court of Appeals in London in the case In re J supported doctors' refusal to treat an infant who was mentally and physically
impaired. Lord Balcombe wrote, "I find it difficult to conceive of a
situation where it would be a proper exercise of jurisdiction to
make an order positively requiring a doctor to adopt a particular
course of treatment unless the doctor himself or herself were asking the court to make such an order" (Miller, 1994, p. 1585). In contrast, in the case of Baby K, a Federal Court of Appeals in Virginia
decided that doctors had a duty to provide respiratory support to
an infant with anencephaly who came to the emergency department despite an explicit Virginia law giving physicians the ability,
"to refuse to provide treatment that the physician considers medically or ethically inappropriate". The ruling states, "We recognize
the dilemma facing physicians who are requested to provide treatment they consider morally and ethically inappropriate, but we
cannot ignore the plain language of the statute [Emergency Medical Treatment and Active Labor Act] 'because to do so would transcend our judicial function'" (In re K, 1994).4
Critics view the arguments in favor of unilateral physician authority in contested cases as unacceptably paternalistic (Callahan,
Conceptual and Moral Disputes about Futile and Useful treatments
115
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1991; Angell, 1991; Veatch and Spicer, 1992). Medical paternalism
may threaten the rights of people who, without pertinent information, have no means to exercise self-determination or protect their
own well-being from the unjustified views of individual practitioners. The doctrine of informed consent developed because many
people sought impartial information and wanted to control or participate in decisions about their treatments.
Even if society were willing to rely upon a community of
experts to resolve contested cases, how should we identify the relevant community of experts to make the decisions for the rest of
us remains problematic? Whose perspectives should shape the
decision: acclaimed investigators, clinicians, lay advocates, or all
of them? Even professional medical groups disagree about what
should be done in the contested cases. This lack of agreement
among medical experts is apparent from the statements drafted by
a variety of medical professional societies and discussed in this
issue by Baruch A. Brody and Amir Halevy (1995). They distinguish four types of futility (physiological, imminent demise, lethal
condition and qualitative) and propose five criteria (precision,
prospective, social acceptability, significant number and nonagreement) that must be fulfilled to justify unilateral decisionmaking on the part of physicians. They argue that the definitions
proposed by major medical organizations express different views,
and question whether a defensible consensus on the meaning of
medical futility could be reached to justify unilateral decisions by
physicians.
Glenn Griener (1995) sees the debate over medical futility as
essentially about physicians' authority to decide unilaterally to
withhold certain kinds of treatments from patients. He notes that
the nature and scope of the moral and other values used in these
contested cases raise doubts about physicians' claims of expertise
to make unilateral decisions in many cases. Moreover, when physicians' defense of unilateral decision-making rests upon clear and
convincing factual information and outcome studies, their quest
for unilateral decision-making might be short-lived. Administrators can also appraise such studies. If they use these studies to
allocate resources, physicians may have very little opportunity to
exercise unilateral decision-making in the clear cases.
Finally, consensus alone does not confer moral authority. Physicians should agree because the position is worthy. It is not worthy
simply because they agree. Their agreement, in short, cannot
116
Loretta M. Kopelman
constitute the final moral appeal for what ought to be done. For
example, agreements generated by arrogance or self-interest, rather
than concern for what is best for patients, lack moral authority.
(2) Patient or surrogate autonomy. Another recommendation is that
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patients or their representatives should generally decide what
ought to be done in the contested cases. For example, Helga
Wanglie was in a PVS and her husband insisted upon continuing
maximal life saving treatments. Others were not being denied
care. The interventions were beneficial in the sense they were
keeping her alive, and her insurance company was willing to pay
for her care. In the absence of a social policy about what will be
provided, on this view, these choices should depend upon the
patient's or family's personal values (Callahan, 1991; Angell, 1991;
Veatch and Spicer, 1992). Contested cases are about how to understand benefits and burdens, and such decisions are often very personal. Physicians may be medical experts, but they are not experts
on the relevant values underlying an individual's best interests
and life-plans.
While self-determination is an important value, it does not neeessarily result in a morally defensible choice in the disputed cases.
Neither scientific nor moral reasoning is just a matter of opinion
or preference. Patients and their surrogates sometimes express
indefensible opinions and preferences. If adopted, reliance solely
on patient and surrogate direction could (1) make patients suffer
needlessly; (2) make professionals act in a way they consider
against their conscience and harmful to patients; (3) drive up
health care costs; (4) thwart efforts to enact rational rationing policies; and (5) hamper triage decisions. Thus, patient and family
preference cannot be the final appeal in determining the most
morally justifiable position since personal opinion alone does not
establish a moral or scientific justification.
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(3) Social consensus. Another proposal is that a social consensus or
agreement is a morally defensible way to settle what ought to be
done in contested cases. If adopted without qualification, however, this recommendation could result in a loss of autonomy for
both patients and doctors. Furthermore, societies acting on consensus have approved evil policies such as unfairly denying goods,
benefits or services for certain groups. Social agreement may be
prejudiced or mistaken and is therefore a problematic arbiter of
moral disputes.
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For example, acting on behalf of the Bush administration,
Secretary of Health and Human Services Sullivan (1992) used the
Americans With Disabilities Act (ADA, 1990) to reject Oregon's
application for Medicaid waiver because the plan refused payment for aggressive treatment for premature infants weighing
under 500 grams. Even with aggressive treatment most of these
infants would not survive, but some would live with disabilities
and a few would be entirely healthy. Sullivan argued that this
policy violated the ADA because such infants are both disabled
(due to prematurity) and otherwise qualified to receive beneficial
aggressive treatments. While people in Oregon used democratic
methods, such as community meetings and telephone surveys, to
try to settle what services people valued and wanted to fund,
Sullivan argued that public attitudes might be prejudicial. He
pointed out that we live in a society with deeply ingrained prejudices and that the democratic process used might reflect these
prejudices. Whether or not one agrees with this judgment about
the utility of publically-funded aggressive treatments for such
infants, his general point was well-taken. Group agreement alone
does not guarantee the conclusion has moral authority.
MORAL JUSTIFICATION
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Although these three solutions to the problem of who decides
when treatments are futile offer important considerations, none
can be the final appeal in reaching a moral resolution of the problem of what ought to be done in contested cases. If one ought to
do the morally defensible action in the contested case, then the
final appeal cannot be solely preferences of someone or some
group. Preferences or agreements may be unworthy because they
result from prejudice, self-interest or ignorance. In contrast, moral
justification requires giving and defending reasons for preferences, and by doing so relying on methodological ideals of clarity,
impartiality, consistency, and consideration of all relevant information. Other important, albeit fallible, considerations in making
moral decisions include legal, social, and religious traditions,
stable views about how to understand and rank important values,
and a willingness to be sensitive to the feelings, preferences, perceptions and rights of others. The evolution of contested cases
often illustrates the pitfalls of failing to take the time to clarify
people's concerns, problems, feelings, beliefs or deeply felt needs,
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Loretta M. Kopelman
CONCLUSION
Clarification of the ideas of medical utility and futility in the contested cases helps illuminate the moral debate. First, the observation that there is no duty to provide futile treatments, while true,
is not helpful since what is in dispute in the borderline case is
whether they are futile. Second, since the concept of marginally
beneficial or futile treatment incorporates both empirical and evaluative elements, both need to be justified to defend a judgment
about the usefulness or futility of treatment. Typically in the contested cases, more than one ranking of important values seems
defensible, resulting in more than one apparently reasonable view
about what ought to be done.
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or even to consider if people are treating others as they would
wish to be treated.
Nancy S. Jecker and Lawrence J. Schneiderman (1995) argue
herein that when people want "everything done" they are rarely
asking for unlimited or inappropriate technical treatment. More
likely, they fear abandonment for themselves or their relatives or
grieve about the anticipated loss of identity through their own
death or that of someone they love. We need to minimize conflict
that generates the contested cases and emphasize caring for patients and families. When treatments are likely to be futile we
should improve communication, share feelings and explore expectations. Requests to have everything done are often pleas to be
treated with compassion and respect. In focusing upon who
decides, Jecker and Schneiderman argue, the needs of patients and
their families have been side-tracked.
Rosemarie Tong (1995), also writing in this volume, agrees that
we need to examine the nature of the conflict in the contested
cases more carefully. She objects to giving physicians unilateral
authority to decide what ought to be done when patients request
some marginally beneficial treatments, since more than a medical
judgment is involved. According to Tong, the key to deciding
what ought to be done when there are disagreements about what
treatments are medically futile concerns improving communication and developing the virtues of both the good physician and
the good patient.
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Third, there will always be difficulties about what ought to be
done in the borderline cases. The problem is not solved by picking
a new threshold since it too will have its borderline cases. While
there are many controversies in the sciences, it is generally
assumed that they can in principle be resolved by better methodologies, studies, data, hypotheses or theories. In contrast, there
may be a diversity of opinion in moral life that cannot be resolved
by these means. This does not mean rational discourse is any less
important in morality than it is in science or that science is valuefree or theory-neutral. Rather it means that reasoned differences of
opinion in moral life can occur and they may result in differences
in the balance given to conflicting goods, rights, duties, goals,
principles, virtues, or values. Insofar as more than one ranking of
them can be justified, different views about what counts as useful
or futile in these contested cases may be vindicated or at least
understandable. Thus, even when we do not agree in our moral
judgments, we can sometimes recognize that alternative views
have merit and that tolerance of diverse opinions may be appropriate. Overtreatments may be burdensome to patients and costly
to society, yet undertreatments can compromise the rights or
dignity of the people seeking help.
NOTES
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For example, patients or their families may feel hostage to paternalism when
told their requests to have burdensome treatments withdrawn will not be
honored. Alternatively, doctors and nurses may feel coerced by threats of lawsuits to provide what they believe to be painful and inappropriate care.
2
For example, see Schneiderman and Jecker, 1993.
3
1 borrow this language from philosopher Benjamin Freedman (1987). He tries to
solve the problem of when clinical trials may properly begin by distinguishing
between "theoretical equipoise" and "clinical equipoise." Theoretical equipoise is
an epistemic (cognitive) state where the evidence is exactly balanced that treatments are of equal value. Clinical equipoise, in contrast, is that state in which the
community of expert clinicians is undecided as to the preferred treatment for the
given population as determined by the study's eligibility criteria; the study
should be designed to disturb clinical equipoise and to terminate when it is
achieved. The current literature sometimes conflates these two versions so giving
them different names might be helpful.
4
Miller (1994) makes and explores this comparison.
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