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CHECKS AND BALANCES AGAINST HASTY CONSENSUS IN ETHICS
CONSULTATION: MORAL DELIBERATION SHIFTS AND THE ZONE
OF EQUIPOISE

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Janet Burstein

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CHECKS AND BALANCES AGAINST HASTY CONSENSUS IN
ETHICS CONSULTATION: MORAL DELIBERATION
SHIFTS AND THE ZONE OF EQUIPOISE
By

Janet Burstein

A THESIS
Submitted to
Michigan State University
in partial fulfillment of the requirements
for the degree of

MASTER OF ARTS

Interdisciplinary Program in Health and Humanities

1997

ABSTRACT
CHECKS AND BALANCES AGAINST HASTY CONSENSUS IN
ETHICS CONSULTATION: MORAL DELIBERATION
SHIFTS AND THE ZONE OF EQUIPOISE
By

Janet Burstein

When and why is consensus oftentimes reached too hastily in ethics consultation?
By examining the underpinning ethical theories in medical decision-making in bioethics, a
distinction will be revealed between ethical decision-making and moral deliberation. The
empirical research in ethics consultation conducted primarily by physicians and bioethicists
demonstrates that there is little agreement on how to evaluate effectiveness in decision-
making in ethics consultation. Consensus in ethics committees, as an outcome of decision-
making, will be examined in order to differentiate consensus as a condition from consensus
as a goal to show the unexamined problem of why consensus is oftentimes reached too
quickly in ethics consultation. The distinction between consensus and compromise will
reveal that genuine uncertainty in bioethical dilemmas has been displaced by negotiated
settlement in bioethical disputes. Moral deliberation shifts can provide a check to ethical
decision-making and a zone of equipoise or genuine uncertainty is proposed as a balance

against hasty consensus.

Contents

1. Introduction ................................................................................ 1
2. The Emergence of Ethics Consultation ................................................. 4
3. Thesis ...................................................................................... 8
4. Methodology .............................................................................. l3
5. Ethical Theories in Medical Decision-Making ......................................... 16
6. Empirical Studies ......................................................................... 25
7 . Consensus in Ethics Committees ....................................................... 33
8. Zone of Equipoise ........................................................................ 46
9. Moral Deliberation Shifts ................................................................ 5 3
10. Case Discussions ......................................................................... 69
11. Conclusion ................................................................................. 100
12. Appendix 1: Ethics Consultation Form ................................................. 103
13. Endnotes ................................................................................... 108

For Sally

These are the things for which there are no limits:
leaving the comers of the field for the poor, the
gift of the first fruits, the pilgrimage offerings,
deeds of loving-kindness, and the study of Torah.

These are the things whose fruits you will enjoy in
your lifetime, while the principal is yours eternally:
honoring father and mother, deeds of loving-kindness,
attending the house of study morning and evening,
welcoming strangers, visiting the sick, dowering the
bride, accompanying the dead to the grave, devotion
in prayer, making peace between one another. And

the study of Torah leads to them all.

Peah 1.1; Shabbat 127a

iv

Introduction

Responsibility for the world takes the form of authority...Wherever true

authority exist[s] it [is] joined with responsibility for the course of things in

the world.

-Hannah Arendt (1968,pp. 189- 190)

It is the second week on the neonatology rotation during the Practicum in Medical
Ethics. The unit consists of two adjoining rooms, 14' x 16'. One room contains infants in
incubators whose lives require less intensive care. The other room is the intensive care unit
for premature infants. Between the array of technology, monitors, heating devices and the
clinical language and details of biochemistry, I may as well be in Uzbekistan. I stand on the
outskirts of the group of residents while the attending physician guides them in monitoring
and caring for the infants. Because I do not understand the language or medical
procedures, and because the infants do not communicate in the same language as the adults,
I am forced to heighten my other senses.

I can not stop myself from thinking that neonatal intensive care units are wasting
money on aggressive life-sustaining treatment to save the lives of many infants born 16 or
17 weeks early, babies weighing less than a pound and who are likely to have significant
disabilities instead of spending money on prenatal care that will help many others. On this
particular day I am exhausted and can barely keep my eyelids open. It is not because I have
been on rotation for 24 hours shadowing the residents. The fatigue is a result of not
understanding the language and imagining the lives of the struggling infants and their
families. We shuffle from incubator to incubator. One resident is kind enough to inform
me that the infant in the incubator nearest the wall has an abnormal trisomy 18(an extra
chromosome). The infant also has an esophageal obstruction which will require either
repairing the Obstruction or permitting the infant to die. He tells me that the mother has
elected to have “everything done.” The mother will learn how to suction and the baby will

probably go home with the mother and die within 3-4 months at home. The mother

apparently knew before the birth, from an ultrasound, that the infant’s life was threatened.
The mother had also given her permission for a DNR order to be placed on the infant.

Two incubators left to go. My attention wanders. All of a sudden the lines on the
monitor go flat where the infant with trisomy 18 is hooked up. The kind resident catches
my eye to make certain that I know what has just happened. (I am relieved to at least know
what a flat line on a monitor means.) One of the nurses lifts the infant from the incubator
and goes into a back room to take a photograph in case the family member does not want to
see the dead body. The rounds and instruction continue. They do not stop. I am
astonished that the rounds continue. I do not know what I want to happen. A moment of
silence? Something? An acknowledgment that a person just died? I leave the neo-natology
confused about physicians’ training and the de-sensitization to death. The cultural
contradiction of saving lives and not bearing witness to death in this moment of residency
and medical education is bewildering.

The resolution of the infant dying on its own, in this case, was less taxing than in
other cases. The advances in medical knowledge and technology cause one to both marvel
at the possibilities for life and to question the use of life-sustaining treatment on impaired
premature infants as an issue in the prioritization of health care resources. A recently
published Canadian study in The Journal of the American Medical Association, “included
150 teenagers, all born prematurely with birth weights of less than 2 pounds 3 ounces, or
1,000 grams,[and] was the first ever to ask the children themselves, or their parents, to rate
the quality of their lives.”1 Although many of the teenagers had disabilities ranging from
cerebral palsy to deafness, 71% gave themselves high ratings for quality of life as
compared to 73% of those born at full-term who also rated their quality of life as high.
Other doctors, including Dr.Saigal who conducted the study, cautioned that the study could
not be used to justify aggressive intensive-care-unit treatment for all premature infants with
extremely low birth weights. In addition, some parents feared that parents might be given

false hope that would lead them to make treatment decisions that they might later regret.

Nonetheless, this study assessed a difficult treatment issue in over a long period of time.
By having children and families speak for themselves, as opposed to or in addition to
researchers or physicians, this study provides information in cases where treatment
decisions and determinations are made for others based on rating the quality of someone

else’s life.

The Emergence of Ethics Consultation

Surrogate decision-makers or parents of severely-impaired newborns are often
assisted with termination of treatment decisions by an ethics consultant or a team of health
care practitioners who practice ethics consultation. The practice of ethics consultation has
emerged over the past twenty-five years from the interdisciplinary field of bioethics. Ethics
consultation developed as a response to specific problems that deal with end-of-life
decisions in health care, access to health care, and health care allocation. The development
of ethics consultation can be traced to an experimental examination at the New Jersey
College of Medicine (McIntyre) and at the University of Wisconsin(Fost) in the early
19703. At the National Institute of Health in the late 19703, Fletcher addressed clinical
ethical dilemmas in a research hospitalz, while Siegler and Pellegrino (1978 and 1979)
delineated a role for "clinical ethics" as a specialized field in medicine.3 4 In 1982, the
handbook Clinical Ethics was published.5 In 1987, the Society of Bioethics Consultation
formed as a specialized organization for persons and groups engaged in the practice Of
ethics consultation or clinical ethics. Two journals; The Journal of Clinical Ethics and The
Cambridge Quarterly of Health Care Ethics emerged during the early 1990s.6 Beaucharnp
and Childress' publication of the Principles of Biomedical Ethics, as one of the foremost
academic texts uses the paradigm of "principlism" (autonomy, beneficence, malefescience,
and justice) to interpret cases in bioethics. These principles are aimed at providing a
framework of moral theory in order to identify and resolve ethical problems for decision-
making in medicine. By applying certain principles, “some type of action is prohibited,
required, or permitted in certain circumstances.”7

The state of flux of our health care system is in part associated with the practice of
the ethics consultation. The practice of ethics consultation is provided by either an ethics
committee or by individual consultants. Within the committee mode there may be an
identified subcommittee who responds to requests, an ethics consultation service that acts

as an extended branch of the ethics committee, or one consultant may be delegated by the

committee to perform consultations. The practice of ethics consultation may occur both at
the bedside and in consultation with an ethics committee. When individual ethics
consultants practice they may be hired by the institution itself or the institution may contract
out this service to an outside group.8 Ethics consultants are involved in a range of
situations that involve legal, ethical and socio-political dilemmas. Identifying methods to
examine the effectiveness of ethics consultation has become crucial in an era of cost
containment in health care delivery where efficacy is integral.

The primary directive for ethics consultation derived from the mandate to “protect
and foster shared decision-making.”9 One aspect of shared decision-making is to enhance
awareness of patient autonomy in decision-making. Over the past three decades patient
autonomy has been a dominant theme in bioethics in order to counteract the role that
paternalism has played in medicine. Bioethics includes such patient-centered guidelines as
advance directives, living wills, substituted judgment, and the best interests of the patient
framed by the goals of treatment decisions such as resuscitation (CPR), artificial tube-
feeding for nutrition and hydration, and mechanical ventilation within the varied conditions
of terminal illness.

Some conceive of ethics consultation as an advisory and advocacy capacity for
patients and families. Others view it as an educational aid to health care practitioners. And
still others utilize it as a consultation service to health care practitioners. Some ethics
consultants change roles depending on the requirements and requests of the situation.
These functions are at best diverse, and quite possibly ambiguous at least. Winslade writes:

[One] set of questions concerns the meaning of "ethics" in the context of

ethics consultation. Does ethics refer to theories, principles, rules, or codes

of ethics? Or does it refer to a type of problematic situation?... Does ethics

require expert knowledge or specific experiences? Or is ethics in this

context merely a matter of reflective common sense?...Answers to these and

other questions are necessary for the development of a theory of ethics

consultation. But in the practice of ethics consultation, my sense is that

"ethics" is construed broadly to refer to value clarification, choices, and

conflicts. In the midst of ambiguity or novelty, ethics consultants may be
called upon to help discern what is going on, what is at stake, and what

responses are appropriate. This is a vague, but I think a fair
characterization. 10

Assessing the quality and usefulness of ethics consultation as an intervention is important
because it is an actuality affecting patient care. Because the practice of ethics consultation is
gaining in maturity, its usefulness as an intervention needs clarification. An exploration of
whether the practice of ethics consultation is a promising health care service that results in
better outcomes in its attempt to clarify decision-making in health care is the broad
intellectual problem at hand.

John Fletcher, one of the founders of the practice of ethics consultation describes
the goals of the interdisciplinary field of bioethics as a focus on ethical dilemmas in health
care, public health, and research.11 Fletcher describes the issues involved in decision-
making in ethics consultation as encompassing: 1) ethical obligations in the care of the
patient; 2)privacy and confidentiality; 3) communication and disclosure; 4) determining the
patient's capacity to make decisions; and 5) informed consent. Under the rubric of the
possible ethical problems that may arise in patient care are: 1)refusal of medically indicated
treatment; 2)decisions to forgo life-sustaining treatment in incapacitated adults; 3) terminal
illness (limits of comfort care;asssisted suicide/euthanasia); 4)reproductive choices,
abortion, etc.; 5)decisions about treatment involving imperilled newborns, infants &
children; 6)access to and containing costs of health care; and 7)rationing at the bedside. 12

The practice of ethics consultation has been utilized by bioethicists such as John
Fletcher, Arthur Caplan, Ruth Macklin, Jonathan Moreno, and Nancy Neveloff-Dubler and
by physician/medical ethicists such as Howard Brody, Mark Siegler, Bernard Lo, and John
La Puma as a way to help health care practitioners and patients to explicitly define value
components of therapeutic treatment decisions and as an alternative to the legal system.

The task of the ethics consultant focuses primarily on cases involving life-sustaining
treatment. The issues involve patient competency in understanding and judging treatment

choices, the suitability of surrogate decision-makers, interpretations of expressions of

patient wishes, and respect for patient welfare. One essential task of the ethics consultant
has been to bring to bear an ethical analysis and to mediate, where necessary, dilemmas that
arise when a conflict of values exist in medical judgments among health care practitioners
and patients, between health care practitioners themselves, or among patients’families.

In 1991, the Joint Commission on the Accreditation of Health Care Organizations
(JCAHO) required any hospital seeking endorsement as an accredited organization to have
a mechanism in place to resolve ethical disputes. Although JCAHO did not specify any one
particular standard, it identified ethics committees and ethics consultants as appropriate
methods. This new development in patient care has spurred on the growth industry of
ethics consultation. State laws in Hawaii and Maryland require ethics committees for all
licensed hospitals and long-term care facilities with similar legislation pending in New York
and Pennsylvania.13

Fox, a sociologist, notes that the "agenda of US. bioethics is more reactive than
initiatory. To a striking extent it responds to the predominating political, economic, and
value orientation of the society, which it tends to reflect rather than criticize or challenge." 14
The practice of ethics consultation developed as a response to end'of-life decisions in health
care due to the convergence and changes in health care technology, health care delivery,
health care financing, and health care policy. The ethics consultant identifies, mediates,
and/or interprets how the patient, family, physician, nurse and other health care
practitioners make sense of an inherently ambiguous life situation with the advent of
medical technology. Increasingly, physicians have been turning to ethics consultants and
ethics committees because of the difficulty in determining the limits of life—sustaining
treatment with patients. An assessment of the impact of the practice of ethics consultation is
essential in examining the consequences for patients, health care providers, and

institutions.

Thesis

Some of the most difficult cases in ethics consultation involve aggressive treatment
decisions for incompetent adults and impaired newborns. The uncertainties and ambiguities
that develop in end-of-life and beginning-of-life ethics cases involve determinations
regarding the quality of someone else’s life. Genuine complexity and perplexity often beset
those people involved in making decisions for others. Despite some limited agreement on
procedures and language,15 there is not widespread consensus on many bioethical
dilemmas. Although awareness of the refusal of life-sustaining treatment has increased, the
dilemmas proliferate with the advent of medical technology and individuals’ ease with
making rights-based claims to health care technology for others.

Ethics consultations are sought by health care practitioners, patients, and families as
a means for resolving conflict and for guidance in medical decision-making. The
consultation process may occur, at the bedside of a patient, as a review before a full
hospital ethics committee, or at a subcommittee meeting. The outcome of the problem is
reached by consensus decision-making. “In an area like medicine where objective
information is often inconclusive regarding particular cases, consensus has an explicit
role.”15 Consensus as general agreement or a majority of opinion is commonly identified
as a goal of ethics committees. Yet, Moreno contends that “the point of ethical deliberation
is not to reach consensus but to attain a desirable end, an end that settles controversy
without further disagreement; put another way, consensus refers primarily to the process of
moral deliberation in groups of human beings, and only derivatively to the conclusion that
is reached.”17 Particularly when the absence of agreement among the respective parties
prevents intervention, the need for consensus as a goal might pressure committee members
into accepting a decision without moral deliberation in order to reach a decision. I will
argue that, in this instance, consensus is oftentimes reached too hastily by ethical decision-
making with an emphasis of convergence on a single moral truth. By contrast, I will

introduce a concept of checks and balances that can serve to prevent consensus from

occurring too quickly. The check of moral deliberation shifts will assist to counteract
ethical decision-making and the balance of a zone of equipoise will serve to counteract
against hasty consensus. Moral deliberation shifts can work as a check against individual
and group interests’ yielding to either moral skepticism or moral dogmatism. In addition, I
will argue that consensus decision-making whose specific function is exploration into
genuine uncertainty in bioethical dilemmas has receded. By contrast, compromise
decision-making whose emphasis is negotiated settlement has emerged in the context of
dispute resolution. In order to re-integrate consensus decision-making into bioethical
dilemmas, the concept of genuine uncertainty or a zone of equipoise is proposed as a
condition in distinguishing consensus and bioethical dilemmas from compromise and
bioethical disputes.

The tendency for abrupt consensus or the process by which participants in a group
hastily converge on a viewpoint in ethics consultation is inadequate as moral guidance and
is characteristic of ethical decision-making, as distinct from moral deliberation. A central
comparison will Show the relevant distinction between these two terms and subsequently,
their two practices. Applied ethics tells us we must balance benefits versus burdens in
trying to resolve conflicting ends. This is typically done by understanding the fundamental
principles of autonomy, beneficence, nonmalefiscence, and justice. The surrogate or the
parent of an imperiled newborn evaluates the benefits to be gained versus the burdens
caused by choosing those treatments in which the benefits outweigh the burdens. The
weighing of benefits versus burdens is specifically designed to resolve a conflict in medical
decision-making.

Ethical decision-making as it distinctly pertains to the practice of ethics
consultation has as its goal the resolution of conflict in accordance with the standards of the
discipline of bioethics. One such ethical standard is the principle of autonomy-the right of
each competent adult to determine what is done to his or her body. Another is the tenet of

informed consent in which health care practitioners are obligated to inform patients of the

10

risks and benefits of therapeutic options. Yet another area that pertains to decision-making
is the obligation to withhold or withdraw life-sustaining treatment when requested by a
competent patient. Procedures in ethics consultation that coincide with these legally-
established ethical standards are characteristic of ethical decision-making.

Moral deliberation refers to an individual’s awareness and practice in relation to
generally-accepted ethical standards. It is critical, self-reflection. Moral deliberation entails
confronting or tolerating one’s inherent sense of uncertainty. Moral deliberation shifts
embody a fluid ability to integrate potentially destabilizing experiences of tenuousness and
irnpermanence. Although a family member, health care practitioner, or ethics consultant
may engage with each other in analyzing moral choices, it is the deliberative process
whereby each respective participant literally shifts her view and conviction that the previous
position was not entirely accurate that distinguishes moral deliberation from ethical
decision-making.

Moral deliberation shifts have traditionally implied that a person lacks confidence in
his decision-making ability or is indicative of someone who “can’t make up their mind.”
For example, in the analysis in Case #3(p. 100), the bioethicist, Baruch Brody, notes that in
arriving at a decision to withhold treatment from an impaired newborn, “[the parents] have
continued to hold it firmly over a period of a few days.” This accustomed and perceived
need for confidence in decision-making is perhaps an apt response to the uncertainty in
medicine. Yet, such a camouflaged emphasis on confidence has the potential to disrupt
moral deliberation. I will argue that the shifts that occur in moral deliberation, when
considered in conjunction with a zone of equipoise, act as a check and balance mechanism
against hasty consensus and provide a robust ethical guideline to emerge that carries a
counter-balance to the moral authority of consensus. A moral authority Of consensus
implies the tendency for participants to believe that solely by reaching consensus, they have
made a “high quality” decision.

11

In the bioethics literature of clinical research, the concept of equipoise in
randomized clinical trials is commonly recognized as a state when an investigator does not
have a preference or cannot decide whether to use one arm of the study over another. The
claim is often made that being in a state of theoretical equipoise is a necessary condition for
ethical participation in a randomized clinical trial. “Equipoise is the point where we are
equally poised in our beliefs between the benefits and disadvantages of a certain treatment
modality.”18 The word “poise” as it applies to clinical research, and as I will argue as it
applies to ethics consultation, carries with it the unique feature of conveying both
composure and steadfastness, while also conveying an element of wavering and hovering,
as in suspension.

Clinical or collective equipoise, as opposed to theoretical equipoise, is a genuine
uncertainty within the medical community about a preferred method of treatment.19 This
reformulation of equipoise in research ethics came about because many clinical trials were
interrupted because investigators did have a treatment preference. Identifying and
substituting collective equipoise deemed a clinical trial as ethical and allowed for the trial to
proceed, although this substitution remains contentious in research ethics.

Because there is little agreement on how to evaluate ethics consultations in cases
involving incompetent adults and severely impaired newborns, I will argue that equipoise
as a condition for cultivating uncertainty can function as a counter-balance against hasty
consensus. It is fair to say that individuals, be they health care practitioners, ethics
consultants, patients, or family members are rarely in a state of pure equipoise. Usually
there is a preference even if the strength of the belief is variable, be it a strong or weak
preference. However, this is not to discount the applicability of equipoise, but to extend
the analysis to identifying a “zone” of equipoise as opposed to a “point” of equipoise within
moral deliberation in the practice of ethics consultation in order to prevent consensus from

occurring too quickly.

12

The role of the ethics consultant is to facilitate and guide the family and health care
practitioner in the process of moral deliberation. By cultivating uncertainty and utilizing
equipoise as a conditional template from research ethics, we can establish a mechanism to
act as a balance against hasty consensus in decisions involving the termination of care in
incompetent adults and impaired newborns. Equipoise will compensate for the tendency of
ethics consultants to invoke an unjustified hasty consensus in the practice of ethics
consultation, while shifts in moral deliberation on the part of the ethics consultant, health
care practitioners, and/or the families of the patient will be indicative of integrating one’s
inherent sense of uncertainty. Moreno points out that

the process by which a belief is attained is commonly used in defense of the

product, the belief itself. Thus, in defending a result of moral deliberation

we may call attention to the “unbiased” nature of the procedure, one in

which all relevant factors have been fairly and properly taken into account;

in jurisprudence this is known as due process. Conversely, if the process

has been corrupted or distorted, this is widely taken as a prima facie reason
to think that the result of that process is likely to be erroneous in some

way.20
Moral deliberation shifts as an aspect of decision-making on the part of ethics consultants,
health care practitioners, and families when combined with equipoise has the potential
benefit of improving the quality of patients’ care in the practice of ethics consultation. The
practice of ethics consultation may also protect patients’ rights and decrease unnecessary
life-sustaining treatment. However, there is the potential for deleterious consequences as
well. These include reducing the quality of care, invalid assumptions that shape
recommendations, and the intervention of a third or fourth-party into the physician-patient
relationship. In order to avoid these obstacles, it is essential to know “when and why

consensus is oftentimes reached too quickly in ethics consultation?”

Methodology

Thesis Question: When and why is consensus oftentimes reached too hastily in
ethics consultation? By examining the underpinning ethical theories in medical decision-
making in bioethics, a distinction will be revealed between ethical decision-making and
moral deliberation. The empirical research in ethics consultation conducted primarily by
physicians and bioethicists demonstrates that there is little agreement on how to evaluate
effectiveness in decision-making in ethics consultation. Consensus in ethics committees, as
an outcome of decision-making, will be examined in order to differentiate consensus as a
condition from consensus as a goal to Show the unexamined problem of why consensus is
oftentimes reached too quickly in ethics consultation. The distinction between consensus
and compromise will reveal that genuine uncertainty in bioethical dilemmas has been
displaced by negotiated settlement in bioethical disputes. Moral deliberation shifts can
provide a check to ethical decision-making and a zone of equipoise or genuine uncertainty
is proposed as a balance against hasty consensus.

1. Ethical Theories in Medical Decision—making, Section 5, within the discipline of
bioethics distinguishes the origins and practice of ethical decision-making as identifiable
and legally—established ethical standards that are applied within the clinical context of ethics
consultation. This perspective has been the underpinning of bioethicists’ work in the
clinical setting and will set the stage to make the central comparison between ethical
decision-making and moral deliberation. In identifying the distinction between these two
key concepts, what will be revealed is the little-examined assumption that consistency in
decision-making translates into confidence and guarantees assurance of a “correct”
decision. I

II. Empirical Studies, Section 6, encompasses the evaluation of characteristics,
procedures, and/or outcomes that measure whether or not an intervention is effective. A
literature review of the previous research in evaluating ethics consultation attempts to

measure and define effectiveness in decision-making. By reviewing the studies that have

13

14

been conducted, and noting the lessons learned from the previous research, I will set a
research agenda for proposing checks and balances against hasty consensus decision-
making in ethics consultation.

III. Consensus in Ethics Committees, Section 7, will investigate the political and
sociological aspects of consensus in order to show that consensus is oftentimes reached too
quickly in ethics consultation. The abrupt consensus that often occurs in ethics consultation
is inadequate as moral guidance. Consensus is first and foremost a condition to the process
of moral deliberation and secondarily to the conclusion or resolution of conflict that is
achieved. An over reliance on hasty consensus as a goal in the latter sense can pressure
committee members into accepting an agreement that fulfills institutional requirements
without concrete scrutiny and moral deliberation. The distinction between consensus and
compromise reveals that exploration and genuine uncertainty are specific to consensus
decision-making; and negotiated settlement is specific to compromise decision-making.
Hence, I propose to interject uncertainty as a zone of equipoise to act as a balance against
hasty consensus.

IV. A Zone of Equipoise, Section 8, is proposed as a condition for cultivating
uncertainty as a balance against hasty consensus in ethics consultation. Moral deliberation
shifts take place within the zone of equipoise. By providing an antidote to confidence, a
zone of equipoise can counter-balance the tendency against hasty consensus. The condition
of equipoise allows the ethics consultant to maintain a critical posture between straddling
detachment and impartiality on one hand and engagement and moral dogmatism on the
other hand. I will offer an example of how the balance of a zone of equipoise as
cultivating uncertainty can work as a condition in the practice of ethics consultation.

V. Moral Deliberation Shifts, Section 9, is proposed as a check to ethical decision-
making in order to provide accountability to unjustifiable consensus. The resolution of
conflicts are subject to moral challenges. Moral deliberation entails confronting and

tolerating one’s inherent sense of uncertainty. Moral deliberation Shifts imply that each

15

respective participant literally shifts her view that the previous position was not entirely
accurate. A camouflaged emphasis on confidence in decision-making potentially interrupts
moral deliberation and precipitates hasty consensus.

VI. Finally, an analysis of three Case Discussions in Section 10 completes the
thesis. Two cases will consist of raw data in the form of written ethics case consultation
reports from a hospital ethics committee. The other case will come from a case study in the
literature. The approach that I will use will be to present the cases in their actual ethics
consultation case review form and to follow each case with an accompanying analysis.
Because the original form of each case varies, I will follow the outline of each case and
introduce the concept of checks and balances of moral deliberation shifts and a zone of
equipoise in resolving the problem Of why and when consensus is oftentimes reached too
quickly. This will demonstrate a practice of ethics consultation that is strengthened. In
closing, I draw the reader’s attention to Appendix I. This final section is a draft of an
Ethics Consultation Form. IfI had been able to observe ethics cases directly, this form

would have been part of the methodology of this thesis.

Ethical Theories in Medical Decision-Making

When we experience an ethical dilemma, or uncertainty, we are guided by moral
reasoning in asking what is required of us. As we deliberate, we are compelled to identify
or justify the conditions under which we think a certain action is warranted. By making
explicit the grounds for our beliefs, we are held accountable for sufficient reasoning. A
chronicle of the ethical theories that guide decision-making in ethics consultation is essential
before unraveling the significance of moral deliberation shifts and equipoise. Some of the
types of moral theories that have provided a framework to evaluate and draw conclusions
from in ethical dilemmas are utilitarianism, Kantianism, principlism, casuistry, narrative
ethics, and an ethics of care, to name a few.

Rationality, or the insistence to not contradict oneself, is the basis of what Kant
understood as making us morally special. Kant argues that by choosing our principles and
living according to them, we should always act so that the rule to which we’re acting, could
be made universal. Kant also held that we should always treat human being as ends, and
never simply as means. Utilitarianism teaches us that the core of morality is to lessen
suffering and to increase happiness. According to this principle, we ask the question of
what action will bring about the greatest happiness for the greatest number of people?

The principles of autonomy, beneficence, nonmaleficence, and justice have
dominated the infrastructure of decision-making in resolving bioethical dilemmas. These
principles offer guidelines in structuring morally complex, inherently ambiguous, and
compelling life-threatening situations. Principlism as a system of ethical theory applies
principles to cases from the “top down. Moral judgment is the application of a
rule(principle, ideal, obligation, or right) to a clear case falling under the rule.”21
Principlism is generally understood as applied ethics. Personal autonomy is distinguished
by a person who has the capacity for making choices and is unfettered by the influence of
others.22 Consequently, respect for autonomy would obligate one person from interfering

with another person’s actions in the pursuit of their goals. Turning to the principle of

16

17

nonmaleficence, the duty is to refrain from causing harm. Beneficence requires us to
balance benefits against burdens, while justice obligates us to distribute those benefits and
burdens fairly.

Recently, principlism has come under attack. It has been criticized for imploring a
ritualistic function without reflection that is similar to an incantation. It was in fact, this
specific criticism that was a stimulus for this thesis. More often than not, the “Georgetown
Mantra” of beneficence, autonomy, nonmaleficence, and justice was used by health care
practitioners in ethics consultation case reviews where I have been serving an internship.
As long as one of the principles was articulated and subsequently granted moral weight,
one did not necessarily need to interpret, analyze, or provide further moral substance or
deliberation. Some critics of principlism regard the reasoning from abstract rules and
principles, or the top-down/deductivist approach, as too detached from the particularities of
everyday life.23

In contrast to principlism is casuistry which uses experiences with cases from the
“bottom up” as a method of analogy and as a paradigm in order to guide decision-making in
a particular case. Casuists are suspicious of rules and principles. They focus their moral
judgments on understanding the particular situation and the historical record of other similar
cases.24 Jonsen and Toulmin(1988) have called for a renewal of casuistry by affirming that
“moral knowledge is essentially particular.” Toulmin repudiates principlism as extraneous
to the needs of the clinic. Many clinical ethicists also lend their support to casuistry as a
method of decision-making. .

Some feminist bioethicists such as Sherwin criticize the narrow focus of principles
and precepts and advocate a case by case analysis that addresses the procedure and the
participants involved in the case. Whereas casuistry provides too limited a context for
some, feminist analysis includes the context of gender, race, class and the relational bonds
in a moral community. This literature also calls for a “thick” vs.“thin” description in case

analysis.”

18

In contrast to the previously mentioned traditional theories of ethics as rooted in
abstract and universal principles, is Carol Gilligan’s work on the ethics of care or the ethics
of responsibility.

The ethic of care differs from [traditional ethics] in that it is particular and

concrete...it does not pursue general rules independently of their specific

effects...while [traditional ethics] focuses on persons only generically and
abstractly, the ethic of care is occupied with actual persons and the

particularities of their circumstances...some feminists have argued that if we
are to recommend a place for caring in ethics, we do so only in conjunction

with a political evaluation of the role of caring in our moral deliberations.26

Gilligan’s focus on the narrative components in moral decision-making is
comparable to what is otherwise known as narrative ethics. Brody(1987), Charon(1994),
and Hunter(l991) conceptualize narrative knowledge as forms of reflection and storytelling
in order to clarify ethical choices in medical decision-making. “Narrative ethics sees health
care as a part of life which must be engaged on its own terms rather than as a special time
outside of history and culture to be analyzed with professionalized...ways of thinking
about life choices.”27 Narrative ethics focuses on how the life of the patient is changed by
his illness in order to help the health care practitioner or ethics consultant embrace the
perspective of the person who has the illness.

I do not consider narrative ethics or feminist theory to be better than other
approaches. Each moral theory mentioned has its particular strengths and weaknesses and
there is no consensus on one particular moral theory in decision-making in bioethical
dilemmas. Most bioethicists believe that it is essential for ethics consultants to have an
understanding of these moral theories, although there is often resistance to the idea that the
work of ethics consultation simply implies a mechanized application of abstract principles.
But rather, there is the belief that these teachings from moral theories effectively serve in
the actual cases.

The early literature on ethics consultation focused on a discourse in bioethics which

concentrated on utilizing principlism and casuistry to unravel ethical dilemmas. The more

19

recent literature focuses on procedural questions of conducting ethics consultation and
answering such questions as: who requests the consult; why do they do so; do ethics
consultants follow a particular process; do their practices vary; by what standards does
moral deliberation improve outcome; and should families and patients participate? In line
with these socio-cultural and socio-political considerations, various models and their
connection to other disciplines have emerged such as Keay's model of psychotherapy,
West and Gibson's model of alternative dispute resolutiOn, Wolfs model of legal
review”, and Neveloff-Dubler and Marcus's paradigm of mediation as a focus on “how” a
decision is made.

Neveloff-Dubler in Ethics On Call writes that her job is based on protecting the
rights and promoting the interests of the patient, while supporting their families and loved
ones.29 Neveloff-Dubler identifies her colleagues of doctors, nurses, and social workers
as those with whom she works with the most and that naturally, the patients are the
"ultimate beneficiaries." She describes the work that she does with the hospital staff as a
"sort of ethics SWAT team." She identifies the patient population as being one that is
vulnerable in the hospital system. She writes:

...[M]y sense [is] that the bioethicist's job is one of the newest ways of

working for social reform. I remain an old egalitarian at heart, committed to
the principle that all people should be provided with a level playing field.

My work is one of the ways of weighting the patient's end.30

Neveloff-Dubler describes most of the cases that she sees as having an essence of "who
gets to decide shapes what will be decided. " What at first may seem like a gnarled ethical
dilemma is often reduced, she says, to the same central question of whose wishes and
values will, ultimately, be respected. Ultimately, Neveloff-Dubler describes Ethics On Call
as a "road map to autonomy." She argues that by analyzing problems and "arguing your

case, you can work to make things come outright."

2O

Neveloff-Dubler’s description of ethics consultation falls under the heading of
ethical decision-making. The goal of the resolution of conflict is in accordance with the
principle of autonomy. By arming patients with an advocate in the form of an ethics
consultant, the central focus is on “arguing your case.” Although Neveloff-Dubler’s
egalitarian claim of “leveling the playing field” is not without merit, it does not seem to take
into account the concept of moral deliberation. Her depiction of resolving an ethical
dilemma entails the use of a road map, a clearly defined set of markers, lines, and routes
that have an origin and a destination. What if a patient gets lost on the way? What if a
patient or family member wavers in their deliberation? According to the “ethics SWAT
team” approach, the camouflaged concept of confidence is embedded in the concept of
“arguing your case.” Moral deliberation as confronting or tolerating any inherent
uncertainty or integrating imperrnanence is not part of Neveloff-Dubler’s “road map.”

Some bioethicists would also disagree with Neveloff-Dubler’s phrase of “making
things come outright” and argue that we should always be a bit uncomfortable with the
decision related to the predicament of forgoing or continuing life-sustaining treatment. The
Lindemann-Nelsons write that judging the quality of a patient’s present state of life “is, in
fact, a judgment no reflective person should be eager to make, as it seems perilously close
to the lebenswertes Leben judgments the Nazis employed to justify extermination of the
mentally and physically disabled.31 The Lindemann-Nelson’s description refers to an
aspect of moral deliberation as distinct from ethical decision-making in noting the
“eagerness” with which one might make a decision. Although the Lindemann-Nelsons do
not go so far as to suggest that a person might shift in his moral deliberations, they caution
the decision-maker against “eagerness” in their decision-making process.

Walker (1993) has written about the change in emphasis from content to process in
ethics consultation by arguing that ethics consultants are responsible for maintaining a
reflective moral space within the health care institution. By thinking of the ethics consultant

as an “architect” and a “mediator...a good resolution is the kind that might come from

21

stakes being clearly assessed, parties becoming clear of their own and others’ legitimate
positions, compromises being achieved that will stand up to review...[and] the process
itself becomes a constituent in the good of the product.”32 Walker’s conceptualization adds
to the distinction of ethical decision-making from moral deliberation by further suggesting
that

[m]oral concepts, principles, values, and argument forms may be starting

points and reference points for moral deliberation, but that process is
progressive and once traversed may not leave everything as it was at the

outset.33
Although Walker does not specify or give an example of how “communities, relationships,
and moral ideas” look different having been through moral deliberation, she nonetheless
articulates a revised process of interpretation that is not reducible to a codelike
implementation that is more identifiable to ethical decision-making.

Robert Veatch in defending ethical theories argues that “without the systemch
approach to problems that ethical theory provides, the alternatives are an intuition, gut
feeling, appeals to authority, or just blatant inconsistency.”34 The warning against
inconsistency is perhaps a valid siren to the emerging practice of ethics consultation as a
profession without standards, licensing, or credentialing. However, inconsistency as
argued against by Veatch has become entangled with the question of whether or not it is
permissible or even encourageable for a person to shift in her moral deliberations and
change her mind. The underlying assumption is that consistency in decision-making
translates into confidence and guarantees assurance of a “correct” decision. What appears to
have become confused is the necessity for professional standards and regulation of who
practices ethics consultation with the possibility that moral deliberation shifts are not a Sign
of inconsistency, but rather indicative of tolerating one’s inherent sense of uncertainty.

Wolf (1992) argues that ethics committees do not accord patients due process.
Wolf discusses the legal concept of due process in the context of the necessity of listening

to the patient and safeguarding his direct involvement in the decision-making process. The

22

hazard that Wolf seeks to avoid is the "intrinsic wrongfulness" of permitting those in
positions of authority to make decisions regarding that person's fate without infomring her
and allowing her the opportunity to participate in the decision-making process.35 Wolf
claims that ethics committees neglect to pursue a patient-centered process in their procedure
of ethics consultation by excluding patient involvement in the process of ethics
consultation, while at the same time heralding the principle of autonomy in bioethics.
Wolf contends that the patient may never know that the committee is discussing her case.
She remarks:

Committees have thus fallen into the same pattern that modern bioethics will

no longer tolerate from the individual physician-expert decision making

without direct patient involvement. We readily recognize that this pattern

jeopardizes patients' interests and rights when pursued by individual

physicians. Committees pursing that pattern harm the patient as well.

Simultaneously, committees cause a broader harm, by showing doctors that
despite what the committee advocates, it actually is not necessary to involve

patients directly in matters that deeply concern them.35

Wolf argues for “nesting rights in a community of caring.” By specifying that the patient
must know the positions of other participants and calling upon the ethics committee to be
open to these challenges, she believes that ethics committees are obligated to inform
patients when their case comes before the committee even if the committee’s role is an
advisory one.

One might question the connection between Wolf’s work on due process in ethics
committees amidst the discussion of ethical decision-making and moral deliberation.
Although I would not go so far as to say that ethics committees that do not inform patients
or their families about an ethics consultation are practicing ethical decision-making as
distinct from moral deliberation, an examination of ethics consultations would not be
complete if it did not acknowledge the relevance of who calls for a consultation-physician,
nurse, social worker, patient, or family member and who is informed that a consultation

has been called. Because most ethics consultants are employed by health care institutions,

23

their ability to take a critical stance might preclude asking whether informed consent has
been obtained in the practice of ethics consultation or perhaps even asking what the
definition of informed consent means in ethics consultation. According to the definition of
ethical decision-making, ethics consultants and ethics committees who do not inform
patients and family members are violating the tenet of informed consent as an established
ethical standard in bioethics and consequently are not satisfying the definition of ethical
decision-making.

Rubin and Zoloth-Dorfman, writing in the Journal of Clinical Ethics, do not accept
these "popular trends" of legal review, mediation, and psychotherapy in ethics
consultation. Although they do concede that communication problems, personality
disputes, and psychological questions may be part of any clinical or healing relationship,
they point out that moral "dilemmas do not arise because individuals have troubled pasts, or
because human interaction can be complicated by misunderstandings or hurt feelings.
Rather, "ethical dilemmas arise because there is no broad consensus about what is right and
good in each and every case, and there is no simple formulaic question that will uncover the
inherent truth or answer to each conflict. "37 Rubin and Zoloth-Dorfman explicitly
understand this to be their definition of an ethical dilemma. They argue that the case should
give all those involved an occasion to reflect on their own moral beliefs and the beliefs of
others. This aspect of "ethical reflection" is similar to one of Fletcher's goals of "learning
something about oneself” as part of the process of ethics consultation. It is what I call an
aspect of moral deliberation because it is specific to the individual’s integration and
awareness in relation to accepted ethical standards. Rubin and Zoloth-Dorfman reject any a
priori goal-setting on the part of the consultation process. They believe that a theological
and philosophical perspective delineates a particular forum that is otherwise not achievable
with other models. One of the strengths of moral deliberation and moral deliberation shifts
is that competing and dualing models of ethics consultation do not have to trump one

another if an a priori condition of tolerating or confronting one’s inherent sense of

24

uncertainty is part of the process. I would reject Rubin and Zoloth-Dorfman’s claim that
only a theological and philosophical forum can achieve what other models can not. I would
argue that the model is secondary to the perspective and goals of the practice and that
“uncovering the inherent truth or answer” is exactly what is problematic about ethics
consultation and the necessity to find a balance to hasty consensus. This is not to say that
resolving the conflict is not important. However, by incorporating shifts in moral
deliberation professionals as ethics consultants are cushioned from advocating for a
particular technique with a precise effect over another technique. Although the purpose of
shifts in moral deliberation is intended to have the effect of challenging one’s previous
position and conviction as not having been entirely accurate, it allows other models to co-
exist or to be applied as need be.

Hampshire asserts that conflict is the starting point of conversation and that conflict
and morality are inseparable.38 He writes:

...[T]here must always be moral conflicts which cannot, given the nature of

morality, be resolved by any constant and generally acknowledged method

of reasoning. My claim is that morality has its sources in conflict, in the

divided soul and between contrary claims, and that there is no rational path
that leads from these conflicts to harmony and to an assured solution, and to

the normal and natural conclusion.39

If there is no “rational path” as Hampshire states, how do we ensure quality ethical
decision-making, develop a mechanism for moral deliberation shifts, and evaluate the
effectiveness of ethics consultation. The next section looks at the previous research on
evaluating ethics consultation as a guide for lessons to be gained and those which to avoid

in devising a mechanism to measure the merit of moral deliberation shifts and equipoise.

Empirical Studies

Although ethics consultations have been conducted over the past twenty-five years,
there are few published reports in the literature on the process and outcomes.40 The
literature on evaluating ethics consultation falls into two categories of empirical research.
The literature dating back from 1986 primarily focused on how bioethics consultants can
function most effectively. The merits of ethics consultation has been a more recent theme
in the literature.

The growth of clinical ethics has prompted a two-year task force, presently
underway, on ethics consultation Sponsored by SHHV(Society for Health and Human
Values) & SBC (Society for Bioethics Consultation). The project will examine the
feasibility of practice guidelines by virtue of the fact that ethics consultants are influencing
the outcomes of specific cases. One issue which the panel will take up is how a "health
care professional or institution could tell whether a clinical bioethics consultant can provide
needed services if the field has no Standards that address [accountability]."41 The first
report on a 1995 conference was featured in a special section of The Journal of Clinical
Ethics. Tulsky and Fox discuss the lack of empirical evidence that would demonstrate that
ethics consultations result in benefits to patients. They point out that ethics consultations
are subject to quality assurance that require justification for expenditure as a health care
service as are other health care resources. In reviewing the previous research, they write
that:

[a]ll of these studies were in some way methodologically flawed. For

example, only two were controlled in any way...most employed

convenience samples instead of random-selection techniques...[T]he

instruments used were not rigorously tested, and they were generally

inadequate to the task. Furthermore, the majority of studies looked at
process only and ignored outcomes, and physicians’ satisfaction was the

primary measure used to evaluate effectiveness":2

The authors note that from these “42 empirical studies,” it is clear that ethics consultations

are requested to help in end-of-life decision-making and that physicians “do appreciate

25

26

them.” What remains at issue, according to Tulsky and Fox, is whether ethics consultations
are cost-beneficial and “if it is effective, which models are the most effective and under
what conditions are different models more or less effective?”43

There have been relatively few empirical studies conducted on evaluating ethics
consultation. Perkins(l988) conducted a study of physicians who had requested
consultations. This study suggested that there was gained confidence in managing a
treatment plan and that physicians recognized withholding life-sustaining treatment as an
ethical issue; but it did not identify issues of guardianship for incompetent adults or the use
of physical restraints as ethical issues.44 LaPuma et al.(l988) also found that the service of
an ethics consultation helped physicians to recognize and resolve ethical issues in patient
care. The study noted that

because the identification and clarification of ethical issues and the process

of ethics consultation may be as important as the recommendations and

references provided, traditional measures such as compliance may not be the

best measures of the success of an ethics consultation service. Instead,
measurement of clinical expertise, communication skills, rational and

humane analysis, and on-site availability may be useful.“5

The evaluation of an ethics consultation in the form of a descriptive report in a teaching
hospital was recognized as having limitations. (This is the method presently used in the
hospital ethics committee where I served an internship which is the basis for the case
discussions later on in the thesis.) Physicians believed that conferring with an ethics
consultant reduced their potential liability.

In White et al. (1993) a survey-based evaluation was conducted of a clinical ethics
program. The three segments of their pilot study included staff education, ethics
consultations at the request of attending physicians, and staff support to the hospital ethics
committee.46 Physicians and nurses were asked to evaluate their "perceived" function of
the ethics consultant. Again, this study showed that health care practitioners valued the

services of ethics consultants in those cases where discontinuing treatment was indicated or

27

in cases where withdrawing life-sustaining treatment was requested. This study suggested
that ethical dilemmas not only occur in difficult cases, but "in everyday practice as well."
Another suggested finding specified that patients "were not very involved in the dilemma
resolution process (perhaps because their condition prohibited them from participating)."47
White's pilot study raised the subsequent question of using patient and family satisfaction
as an outcome in the evaluation process, as long as health care practitioners do not perceive
such involvement as inhibiting the process. This observation suggests that there are
multiple agendas in simultaneously assessing ethics consultation as experienced and
understood by both health care providers and family members.

Wilson-Ross (1995) points out that the question of who initiates ethics
consultations contradicts a consensus in the literature on ethics committees and JCAHO's
(Joint Commission on the Accreditation of Health care Organization) mandate that
consultation requests not be limited to physicians. She reports that several committee
members only accepted cases when the physician initiated or approved of the request. The
interpretation for this, she suggests, is largely political, because if an ethics committee by-
passes the physician an additional conflict might evolve between the physician and the
committee.48 Another aspect of the process of ethics consultation involved writing chart
notes. There were committee members who reported that they did not write on charts.
Wilson-Ross speculates that their reasons for not doing so might involve “political
concerns” by not wanting to trespass on a health practitioner's territory. She writes:

What committees may need seriously to address is their goal. Is their task, '

at heart, to support all those involved in a disagreement because unresolved

disagreements are unlikely to translate into good patient care? Or, on the
other hand, is their task to protect patients from doctors, as many of the

"ethics police" writing in the literature seem to think it should be?49
It is not clear how to define quality improvement or how to evaluate methods that
are used in executing an ethics consultation. While La Puma and Priest( 1992) argue that

the traditional answer lies in credentialing, Fletcher(l992) responds by suggesting that an

28

ethics committee is preferable to an individual consultant because an interdisciplinary
committee has a broader scope on a variety of ethical dilemmas. Because evaluative
research in the practice of ethics consultation is scant and is now only beginning, the
variables and characteristics for standards for evaluation are being set in order to conduct
more rigorous studies for the future. Most of the studies from the literature have measured
physician satisfaction in relation to decision-making, education, the resolution of dilemmas,
and assistance with treatment plans. What is lacking in the literature are studies that
measure patient and family response to whether an ethics consultation was effective or not.

La Puma and Schiedermayer(1991) advocate for the role of the ethics consultant to
first and foremost collect information at the patient's bedside. The principle justification for
the practice of ethics consultation originates from the mandate to foster shared decision-
making. La Puma and Schiederrnayer assert that the ethics consultant must protect shared
decision-making and make certain that the issues are clarified and shared between the
physician and the patient. In addition, they note that physicians' apprehension about
liability and "payers' concerns about the cost of care have fueled the search for special
expertise."'-"‘0 The role of the ethics consultant traverses the range of a mediator, educator,
consensus-builder, and negotiator according to La Puma and Scheidermayer. They
contend that the ethics consultant works for both the physician and the patient, but it is the
primary physician who "engages and dismisses" the consultant.

Fletcher (1992) comments that the request for an ethics consultation is often still
confined to the attending physician, rather than to other health care practitioners in the case
or to the patient and family. He also asks if in the process of the consultation if due
process is honored by obtaining consent from the patient or the surrogate.51 Fletcher
responds to La Puma and Priest who assert that the principle goals of ethics consultation
are to "effect ethical outcomes in particular cases and to teach physicians to construct their
own frameworks for ethical decision making," by commenting that these goals are "too

narrow" and that broader perspectives of the goals of ethics consultation should include:

29

"1) protecting and enhancing shared decision-making in the resolution of ethical problems;
2) preventing poor outcomes in cases involving ethical problems; 3) increasing knowledge
of clinical ethics and 4) increasing knowledge of self and others through participation in
resolving conflicts."57-

Siegler (1992) remarks, in response to Fletcher, La Puma, and Priest, that although
they all purport "patient-centered" goals for ethics consultation, he contrasts this goal with
an institutional goal of utilizing scarce resources in cost-containment or to minimize an
institution's risk of liability. This is but one divergent goal of which there is fundamental
disagreement about the goals of an ethics consultation, he says. Siegler, himself, is a
proponent of the ethics consultant as medical specialist. Siegler thus remarks that there is
insufficient data to the following questions:

1)Who requests ethics consultations?; 2) What is their goal in making such a

request?; 3) Are patients and families informed when their physician

requests an ethics consultation?; 4) Do ethics consultations identify

unrecognized ethical issues or do they clarify issues that have been noted by

those requesting the consultation?; 5) Do ethics consultations change patient
management and, if so, how?; and 6) Are patient outcomes improved as a

result of consultation?53

A recent “reconciliation” between Siegler and Fletcher has resulted in a consensus statement
that bridges the gap between clinicians and bioethicists by defining ethics consultation as a
service “provided by an individual consultant, team, or committee to improve the process
and outcome of patients’ care by helping to identify, analyze, and resolve ethical problems
in a specific clinical case.”54 Fletcher and Siegler identified four variables that complicate
the goals for ethics consultation. They are: l)the lack of agreement about the role of ethics
consultation; 2) the diverse professional backgrounds of practicing consultants; 3) the array
of models for providing ethics consultation; and 4) the lack of published studies.55
Schofield(1993) has asked whether the practice of ethics consultation is becoming

the professionalization of ethics consultation. He has raised a body of concerns related to

3O

credentialing and whether subjective factors affect the work of ethics consultants as
professionals who possess a "moral expertise." Scofield states:
Ethics consultants claim that their expertise consists of identifying,
analyzing, and resolving moral problems in patient care, which makes their
field of expertise a subspecialty of general and applied normative ethics.

Implicit in this claim is the belief that normative ethics and objective answers
about what ought to be done do exist, views that some ethicists expressly

hold. How valid are these claims and beliefs?56

Fletcher, in a commentary on Scofield, responds that the ethics consultant does require
special knowledge and skills and that indeed Scofield's challenge to develop a procedure
for accountability is well-taken. However, he rejects the argument of professionalization as
an illusory controversy but, rather challenges his colleague to debate the issues that will
make a difference in health care.57 I agree both with Fletcher’s rebuke to Schofield
regarding the criticism of professionalization and with Schofield’s concern that some
ethicists believe that objective answers do exist. The function of moral deliberation shifts
and the condition of cultivating uncertainty or equipoise addresses Schofield’s claim that a
subspecialty of normative ethics is taking hold. By integrating a process that has as its
condition the opportunity for each participant to literally shift his view and conviction that
the previous position was not entirely accurate, the potential for the inculcation of
normative ethics is averted. In addition, the check and balance of moral deliberation shifts
and equipoise has the potential to lend itself to addressing the issue of accountability in
ethics consultation. If part of the premise is that there are no objective answers in the
practice of ethics consultation, defining conditions that assist all the respective participants
to deliberate over the widest range of possible options holds the parties accountable to
themselves and to each other.

Resolving conflicts and problem-solving is a focal point in the practice of ethics
consultation. Within this role there are at least three functions which command the attention

of the ethics consultant. They are: l) to manage and reduce complexity and uncertainty in

31

medical decision-making in order to allay conflict; 2) facilitate meaningful action; and 3)
foster consensus. Given the breadth of these aims, it is not unrealistic to expect that there
might be times when dissonance exists between the health care practitioner, the patient, and
the ethics consultant.

Crigger (1995) points out that upon closer inspection, the practice of ethics
consultation jeopardizes the goal of empowering patients in its attempt to help clarify values
related to medical decision-making by introducing a third-party into the physician-patient
relationship.58 Crigger has called attention to the practice of ethics consultation as it may
wield subtle influences on patients to skillfully articulate and manage their commitments
and values. Crigger speculates that the very "presence" of an ethics consultant may suggest
to the patient that he might be faltering in expressing his values in the "right" way.

...A failure to express them directly in the formal terms of a recognized

paradigm(be it principlism or religious faith or rights or any other), or in

ways and words that are more or less readily translatable into the normative

idioms[are] so prevalent in interprofessional discussion and consultation
case reports. Being able to "think about that now" and talk about it in a

formal way becomes a requirement of the contemporary Sick role.59

In a recently published study by McClung et al.(l996), an ethics consultation
service was evaluated by both health care practitioners and patients and their families. In
this outcomes-based study, participants were asked to rate the helpfulness of the
consultation. Of those surveyed, 96% of physicians and 95% of nurses felt that the
consultation was helpful as compared to 65% of the patient/family responses.60 Family
respondents’ statements ranged from: “I found the committee warm, sympathetic, and
understanding; they helped bring me peace at a very difficult time;” to “I feel it wasted
precious time I could’ve spent with my dying husband!” The thirty percent differential
suggests that health care practitioners and families have different experiences of the benefit

of ethics consultation. When variations are documented in the context of ethics

32

consultation, it provides information on decision-making and moral deliberation that can
assist both health practitioners and families alike.

In the most recently published study on evaluating patient and family perspectives,
by Orr et al.( 1996) interviews were conducted using both multiple-choice and open-ended
questions. “Fifty-seven percent of interviewees found the ethics consultation to have been
helpful, and only 4% found them to have been detrimental.”61 The consultation was
perceived by families to have been helpful when a major change in treatment resulted.
Based on the open-ended responses, the investigators speculated that there were seven
ways that the consultation was perceived as helpful. These included “increased clinical
clarity, increased moral or legal clarity, motivation to do what they believe is right,
facilitation of the process of decision-making, implementation of a decision, interpretation
of technical language, and consolation and support.”62 Although these categories are based
on anecdotal comments from the interviewees, this study focused on the consultation
process in addition to the outcome in its analysis. In addition, it offers an opportunity to
correlate respondent’s comments with identifying Shifts in moral deliberation and the role
of equipoise in ethics consultation. Some of the following comments under “moral clarity”
suggest a certainty, or the absence of equipoise, which I argue is a relevant condition in
moral deliberation. Interviewees comments included:”he helped us decide what is right and
wrong; he helped us understand what is morally and legally OK; she helped us determine
what was the best thing to do; and he helped me to understand the rationale.”63 These
comments are taken out of context, and by virtue of my analysis I am taking them further
out of context. However, I draw the reader’s attention to the words: right and wrong,
morally OK, and best thing to do. Perhaps, these comments and conclusions reflect shifts
in moral deliberation and cultivating the condition of equipoise. But one must also imagine
that the process of moral deliberation may have been abbreviated in order to achieve

consensus or to by-pass the moral weight that uncertainty plays in ethics consultation.

Consensus in Ethics Committees

Consensus provides an orientation for decision-making when legal, institutional, or
social policies do not provide the necessary guidance needed in complex and critical cases
in health care decision-making. The role of consensus in medical decision-making occurs
at the national level in policy questions of biomedical research through The National
Institute of Health Consensus Panels.64 Some NIH Consensus Panels focus on
determining the answer to factual questions while others focus on practice guidelines. At
the institutional level, consensus is used for research protocols in institutional review
boards and for clinical treatment decisions in hospital ethics committees.

The shift in focus from the individual to the collective in health care decision-
making paralleled the rise of medical technology. One reason termination of treatment
decisions have proven so difficult, even with obviously dying patients,65 is that medical
technology can be used to gain a few hours, days, weeks, months, or even years. The
continuing failure to find a meaningful way to define such terms as “minimally adequate”,
“medical necessity”, and “marginally beneficial” has led to consensus decision-making
within the medical community.

Medicine is intrinsically consensus-driven because generalized scientific
information is regularly applied to particular cases.66 For example, the 1983 President’s
Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral
Research came to a conclusion that there is no ethical difference between withholding and
withdrawing life-sustaining treatment, although in clinical situations some physicians may
have difficulty welcoming this conclusion.67 Other consensus statements that ethics
consultants might refer to include institutions that study bioethics such as The Hastings
Center which produced a document on “Guidelines on Withholding and Withdrawing Life-
Sustaining Treatment,” The Kennedy Institute of Ethics, and professional organizations

such as the Society for Bioethics Consultations.

33

34

Virtually all ethics committees utilize consensus as an outcome for decision-
making.68 The heterogeneity of health care practitioners such as nurses, doctors, social
workers, and patient advocates along with lawyers, philosophers, and administrators
requires resolution in decision-making in cases that involve forgoing or continuing life-
sustaining treatment. Physicians may seek support in making difficult decisions, or
perhaps a request for an ethics consultation provides reassurance in protection against legal
liability. Yet, the adeption of consensus as a decision-making procedure for ethics
committees and for ethics consultation has implications of its own.

The dyad of the physician-patient relationship as the principle decision-making
realm has expanded to encompass a group of people. Decision-making that had been
typically confined to the physician and the patient has expanded to include other parties,
most notably families, the ethics consultant, the nurse or other health care practitioners, and
perhaps a clergy member. This shift in decision-making from the individual to the collective
level subsequently effects the measurement of effectiveness in group decision-making and
the moral authority that is assigned to consensus. (While there is abundant literature on
consensus and ethics committees, there is virtually no literature on consensus and ethics
consultation. Although ethics consultation is often a component of ethics committees, it is
dissimilar in that it usually encompasses a smaller group of people. Nonetheless, the
literature on consensus and ethics committees is pertinent.)

The practice of ethics consultation and ethics committees are political institutions in
the sense that they represent a source of authority. Moreno(1988) writes that unlike
autonomy, consensus as a political concept has not endured a thorough examination.
Although ethics committees generally refer to themselves as acting in an advisory capacity,
rather than a “decision-making” role, they nonetheless comment on difficult cases and draw
up guidelines for institutional policies that involve conflicts of values. The function of

consensus is that it appeals to a community and will authenticate an outcome on a broad

35

basis. In this respect, an ethics committee or an ethics consultation becomes a mechanism
in medicine for making treatment decisions. Moreno comments that
[i]n this fashion ethical questions have been drawn into the system of expert
consensus’, so much that there has been little attention paid to philosophical
reservations about institutionalizing moral guidance through group
structures. This is surprising because Western philosophy is replete with
warning about the special danger of permitting individuals to cede moral

responsibility to groups...[and] modern social psychology is full of
accounts of the distortion of rational decision making by the effects of small

group interaction.‘59
In being alert to the potential for rupture in moral deliberation in ethics committees, Moreno
identifies consensus as a condition, and not as a goal of moral deliberation or an end-in-
itself. In describing consensus as a necessary condition for achieving moral authority,
rather than as a basis for that authority, Moreno identifies two levels of consensus in ethics
committees: one is a consensus about the application of principles and the other is
consensus about principles or “deep consensus.”7O When consensus is primarily the
application of principles or ethical decision-making, there is a risk that consensus in ethics
committees can “institutionalize moral guidance” and can become a basis for authority
without moral deliberation. Unchecked moral authority tends to converge on a single moral
truth versus an emphasis on collective and moral deliberation that utilizes consensus as
condition, versus consensus as a goal. Moreno points out that it is unusual for an ethics
committee to discuss how they differently weigh the same principles when they all reach
the same conclusion. Hence, the emphasis on distinguishing consensus about principles
from the application of principles is important. It is easier for a committee to agree on a
certain course of action, but identifying why a decision is correct is more difficult. Moreno
comments further that the attempt to reach for deep consensus is exceptional. Rather,
committee members exchange medical, legal, and psychosocial information, and voice their

response.71

36

If committee members are unlikely to reveal their principled differences in deciding
on a case, it might suggest that upon closer inspection, consensus may occur too hastily in
some cases. Moreno’s distinction between consensus as a condition(consensus about
principles) and consensus as a goal(the application of principles) warns of the inherent risk
of committee members saying, “I don’t care what we decide, as long as we all agree.” Yet,
it is difficult to specify the criteria that can legitimate consensus as a condition. It is also
more complicated to identify how a systematic procedure that increases the likelihood that
conditions such as a check of moral deliberation shifts and a balance of a zone of equipoise
work than to describe the problems in consensus decision-making. However, I will
proceed with analyzing consensus and ethics committees as they face the challenges of
health care decision-making.

In his account of the procedural stages of consensus, Peter Caws identifies three
different points in the process: “the initial situation of the participants, the ways in which
they change their positions, and the collective judgment that emerges (if it does).”72 In this
design, consensus is the outcome of deliberation. Caws also anticipates the likely
consequence of consensus as the outcome of deliberation as an “expensive luxury in the
heat of the moment” when there is pressure in a case to make a decision sooner than later.
He advocates for an initial consensus, whereby a background of shared agreements exist
and participants “have fiduciary knowledge” of each other in a deliberative body. Caws
writes that in the life and death decisions that are part of the committee process, it is
important to understand the interpersonal connections in making such difficult decisions.
Caws argues that consensus does not necessarily have anything to do with whether or not
an outcome is correct, and that a shared consensus is based on the reliability and
trustworthiness of others in the group. This aspect of “fiduciary knowledge” is similar to
Moreno’s use of a sociogram in an ethics committee, a process that identifies who allies
themselves with whom in the decision-making process. Fiduciary knowledge in one’s

colleague is perhaps an essential element to consensus decision-making because moral

37

deliberation entails being influenced by the knowledge and information that others
communicate. However, if fiduciary knowledge is not accompanied by knowing what
moral weight is ascribed to participants’ positions, it hedges on ethical decision-making and
the tendency of individuals to cede their moral responsibility to the group. This brings us
back to Moreno’s explanation that it is easier for people to agree that a particular decision is
right than for them to agree on why a particular decision or course of action is right. Caws
questions whether consensus among participants lends itself to a basis for greater
confidence in the correctness of the decision made and concludes that the extent of fiduciary
knowledge is the basis for which one can rely on “deriving any comfort from the fact that
others share a consensus.”73

Habermas’s concept of consensus, as described by Caws, is a structure in which
no participant changes his mind about another participant, but one in “which positions on
the issue shifted in the light of arguments made in the previous round.”74 By contrast,
Caws argues that participants do change their opinions of one another in seeking new
information. Whether shifts in committee members’ perceptions of each other as Caws
describes or moral deliberation shifts as Habermas depicts them, the condition Of moral
deliberation shifts can be integral to consensus decision-making and its absence may alert
us to the problem of hasty consensus. If consensus in and of itself does not entirely
authenticate the resulting decision, what other component in consensus decision-making
might committee members be alert to in guarding against a hasty consensus?

The pivotal role of confidence presumably reassures committee members that the
resulting decision is the correct one. If one’s position is subject to change throughout
deliberation, the indicator of increased confidence as confirming the rightness of the
position has not been sufficiently flushed out as a criteria for arriving at consensus.
Caws’s intervention in addressing this problem is the use of fiduciary knowledge in which
committee members convince one another of their trustworthiness. Rather than knowing

the reasons for a person’s decision, fiduciary knowledge requires us to “know the reasons

38

for which a person deserves respect as a theorist or a scholar.” This antidote to confidence
in consensus decision-making guides us toward a moral threshold with amorphous criteria
that potentially reinforces a moral authority of consensus. Generating fiduciary knowledge
might assist in interpersonal group dynamics, but it also has the capacity to create a comfort
level and complacency that can contribute to hasty consensus. Having confidence in one’s
colleagues is an essential condition of professionalism, yet it is precisely this zone of
confidence that compels us to search for balance as in a zone of equipoise or uncertainty. In
addition, the presence or absence of agreement is not an effective measurement in
characterizing the degree to which an intervention is successful in ethics consultation.75

Caws’s mediated solution is similar to Moreno’s discussion on sociometrics.
Moreno focuses on identifying and legitimizing the social and political decision-making that
occurs in ethics comrrrittees. Moreno’s aim is to conceptualize ethical decision-making
through sociological processes. In a pluralistic society, issues such as whether or not to
withhold life-sustaining support from an anencephalic infant warrant a process-oriented
approach to consensus decision-making. Consensus decision-making is borrowed from
social and political theory. The sociological application of the role of consensus in ethics
consultation focuses on the social and political conditions that grant moral authority to
consensus. A sociological perspective looks at the social system within which the
participants are Situated and investigates details on what criteria legitimate moral authority.
The criteria which authenticates consensus decision-making in an ethics committee within
the hospital as a social system are obscure and not well understood. The question that
Moreno addresses is what legitinrizes the moral authority of consensus within the
constituencies of a hospital.

Therefore, Moreno proposes adopting Simmel’s small group theory in
understanding the role that social science plays in consensus processes in ethics
committees. In identifying the formation of triads according to sociometric theory,76

relations among members are specified and minority alliances are diagramed in assisting

39

committee members to manage the discussion of difficult cases. In revealing and concealing
group alliances, Moreno’s proposal of Studying triads within the larger group of an ethics
committee is an attempt to improve the results of consensus decision—making. He contends
that knowledge about small group theory can add to the committee’s or consultant’s
deliberation in difficult cases.

Consensus in medical decision—making is an important concept as a practice of
discourse rather than as a body of “objective knowledge.” Consensus as a moral theory
aims at helping us to understand socio-political dimensions about what morality requires,
rather than as objective and knowable truth or morality. Consensus as a conclusion arises
under certain criteria or necessary ingredients that substantiate the case. Jennings(1991)
writes that consensus on its own has minuscule value, but rather that it must be seen as
something other than the outcome of a decision-making process. Because consensus
potentially can grant the individual the ability to not claim her own moral deliberation, but
may allow the other participants to assimilate the decision,77 the check of moral deliberation
shifts and balance of equipoise as uncertainty can substantiate consensus decision-making.

In proposing that a mechanism of checks and balances can guard against hasty
consensus in ethics consultation, I have made the assumption that consensus rather than
compromise is the operative concept because genuine uncertainty exists about the best
course of action in a bioethical dilemma; whereas in compromise, the model of negotiation
is usually applied. In distinguishing between consensus and compromise in ethics
consultations and ethics committees, the concept of general and genuine uncertainty in
consensus precludes a negotiated settlement as in compromise. Perhaps, genuine
uncertainty is no longer the operative concept in bioethical dilemmas and that bioethical
disputes are more representative of issues that require resolution in addition to or instead of
exploration. If this is the case, then a brief explanation of the differences between

consensus and compromise will be useful in the overall argument of why interjecting a

40

zone of equipoise or uncertainty can prove effective in order to maintain consensus
decision-making and providing a safeguard against hasty consensus.

Consensus decision-making is characterized by a general agreement arrived at by
most of those concerned. The outcome, perhaps not the very best in the view Of each
participant, is at the very least acceptable to each person. Caws writes that:

[C]onsensus...is categorically distinct from compromise, or agreement by

mutual concession...Compromise is a way of concluding, and there’s study

of the pragmatics of concluding-let’s get it over with, let’s get out of

here...Consensus would Show up in this way, but only as one way, and a
comparatively rare one at that, of concluding discussion and establishing a

basis for action.78

A similar distinction implies that compromise is the best conceivable outcome when no
ethically acceptable solution is agreeable to all.

Consensus and compromise decision-making concepts are used frequently,
interchangeably, and loosely in ordinary language. The most crucial distinction and source
of confusion in understanding and defining the differences in ethics consultations and
ethics committees is that of genuine uncertainty in consensus versus pre-determined
preferences in compromise. A brief look at the comparison below clarifies why the two

terms are often misconstrued.

Consensus Ccmmmise
exploration resolution

uncertainty negotiation

openness to unanticipated possibilities pre-existing preferences
dilemma dispute

Moreno describes the distinction between compromise and consensus by suggesting that
compromise implies that participants have pre-existing preferences. He writes:
Consensus carries no such baggage; it suggests an openness to

unanticipated possibilities and points of view. At a deeper level, it holds out
the prospect that individuals will themselves change as a result of the

4]

process, that they will achieve perspectives that had not been available to
them before...in a compromise...parties enter the bargaining room [with] a
fairly good idea [oflwhat their basic interests are, with the intention at least
to defend if not advance them. Whatever compromise is to be reached will
be constrained by those a priori positions. Consensus, however, implies no

such clarity about one’s particular interests.79

Moreno’s astute distinction between compromise and consensus is a clear reference to the
intricacies involved in differentiating between genuine uncertainty in bioethical dilemmas
versus negotiation in bioethical disputes in decision-making in ethics consultations and
ethics committees. Surprisingly, Moreno advocates consensus decision-making. This
seems particularly contradictory to his chapter on small group theory and the use of
sociograms in diagraming the alliances of respective ethics committee members. If
consensus, according to Moreno, “implies no such clarity about one’s particular interests,
nor even necessarily which interests are at stake in the current deliberations,” then his focus
in specifying the socio-political subgroupings in an ethics committee would seem to
contradict the necessity and formation of triads as alliances if particular interests weren’t at
stake. The framework of sociograms corresponds to compromise decision-making more so
than to consensus decision-making. Yet, Moreno argues that consensus is a more usual
bioethical framework than compromise.

Perhaps Moreno’s emphasis on bioethics as a social reform movement constrains
his analysis in advocating for consensus versus compromise. Although Moreno
acknowledges the role and function of compromise and dispute resolution in case
consultation, he does not address why models such as alternative dispute resolution, ,
mediation, and psychotherapeutic interventions have been adapted for ethics consultation.
This is all the more perplexing when Moreno points out, “[b]ut the model of negotiation
should not casually be applied to a situation in which there is general and genuine
uncertainty about the best course of action, for this is one in which consensus rather than
compromise is the operative concept.”30 What has become blurred even for Moreno is

articulating why it is important to maintain the significance of genuine uncertainty in

42

bioethical dilemmas and how this affects the ethics consultant, health practitioner, and/or
family member who is involved in an ethics consultation or ethics committee. Are these
parties entering the bargaining room with a fairly-well established and basic interest in
advancing their position or are they open to unanticipated possibilities and points of view?
And if we conclude that genuine uncertainty is pertinent but has gone awry, how can we
bring it back in?

It is uncommon to find a physician who by virtue of her medical training does not
have a basic interest in defending some aspect of the professional ethic and commitment to
saving life at all costs. To expect a physician to have genuine uncertainty in cases involving
forgoing or continuing life-sustaining treatment is not completely authentic. The family of
the patient is often saddled with an array of conflicting interests from the sheer burden of
having to make such an overwhelming decision to the potential loss and death of a loved
one. In addition, financial considerations might be integral if the decision involves a
severely-impaired newborn or elderly, incompetent adult with a terminal or chronic illness.
The ethics consultant who is not a salaried staff at the hospital, but is someone whose
services are sub-contracted and provides a consultation service with a rotating ethics
consultant, is most likely to have an openness to unanticipated possibilities. However,
most ethics consultants are health practitioners who work in the hospital as either a
physician, nurse, lawyer, social worker, or administrator and must straddle the competing
interests of the hospital, their clinical or administrative function, and whatever personal
preferences they may bring to their assessment of the bioethical dilemma. These multiple
roles can quickly preclude the openness that Moreno identifies as specific to consensus
decision-making. It would seem more legitimate to identify the respective parties as
having “more or less fixed preferences” and find a way to bring uncertainty back in. This
acknowledgment would strengthen Moreno’s assertion that consensus is first and foremost
a condition to the process of moral deliberation and secondarily the conclusion or resolution

that is achieved. An over reliance on consensus as a goal in the latter sense can pressure

43

committee members into accepting an agreement that fulfills institutional requirements
without concrete scrutiny and moral deliberation. In addition to Moreno’s stipulation of
consensus as condition, I have added the condition of equipoise or genuine uncertainty to
guard against hasty consensus. In acknowledging practitioners’ “more or less fixed
preferences,” and proposing a zone of equipoise, we are at once conceding that there are
particular interests at stake and simultaneously prompting participants to the genuine
uncertainty that exists as a dilemma, not solely as a dispute, and to reach for perspectives
that might not have been accessible to them before.

In a review of Moreno’s book, Deciding Together:Bioethics and Moral Consensus,
Benjamin notes this overestimated notion of consensus and writes:

Moreover, one can question the plausibility of requiring members of ethics

committees or commissions to be so uncertain about the ethics of a

problematic situation as to resort to the unmediated operation of such a

moral sense. Open-minded and fallibilistic, yes; but how many of us can

honestly claim to have no prior inclinations—to be absolutely agnostic-about

problematic situations in bioethics? If the operation of the moral sense
requires that individuals come to the table with what amounts to an ethical

tabula rasa, Moreno’s approach will have limited application.81
Benjamin comments further that “consensus is a notion more used in bioethics than
understood. There is, as a result, no informed, well-grounded consensus about the nature,
value, and limits of consensus.”82 (Moreno points out that the bioethical issues of abortion
and euthanasia are examples that are perhaps beyond the grasp of consensus, and ones in
which compromise is more likely than consensus.) What emerges in the literature, as
Benjamin notes, is that there is little consensus on the operation of agreement(consensus)
and the method of arriving at consensus. I agree with Benjamin’s critique of Moreno’s
formulation of consensus as having limited value. Yet, the substantive aspect of consensus
that can not be dismissed is the issue of genuine uncertainty and the intricate process of
participants changing as a result of the process and “achieving perspectives that had not

been available to them before.”

44

If we were to concede that bioethical dilemmas are bioethical disputes through
which compromise decision-making has more benefit, than participants are still encouraged
to consider perspectives other than their established or fixed viewpoints. But, as we will
see in the case discussions, it is not clear that health practitioners in ethics consultations
gain new perspectives, even if they are engaged in compromise decision-making.

The absence of the condition of uncertainty guarantees a degree of vieing and
“politics” that interrupts an authentic inquiry about moral concerns. It would be naive to
expect committee members to come to the table with no pre-conceived interests as
Moreno’s definition of consensus would suggest and as Benjamin points out would have
limited application. Yet, as Moreno comments further “what sets consensus apart from
compromise is...that participants enter the scene in doubt about how to resolve the
problem, whereas in compromise the participants have no doubts, except perhaps about
how best to ensure that their position largely prevails.”33 Uncertainty or equipoise as a
condition Of consensus, is more apt to bring about a level of openness, that otherwise
remains elusive when compromise decision-making prevails.

Although these remarks have overlooked some of the significant differences
between the various philosophers and political scientists whose complex analyses have not
been included, my purpose has been to establish sufficient groundwork in order to proceed
with the relevance of moral deliberation shifts and equipoise as a check and balance
against hasty consensus. Although it may seem counter-intuitive to strive for reaching a
state of uncertainty, as in equipoise, in medical decision-making where so much uncertainty
already exists, identifying a zone of equipoise provides a necessary equilibrium against
hasty consensus. Ultimately, I am arguing that we acknowledge the socio-political elements
that exist within the hospital ethics committee or ethics consultation; and secondly, that the
genuine uncertainty of moral concerns can co-exist within the socio-political elements that

often take the form of bioethical disputes. What I am proposing is an integration of the

45

element of socio—political factors and facilitation and reinstatement of the condition of

genuine uncertainty into bioethical dilemmas for consensus decision-making.

Zone of Equipoise

Uncertainty in medicine is pervasive. Variations in motives, values, and differences
of opinion contribute to the complexity of tasks such as making a diagnosis, choosing a
procedure, and analyzing outcomes which produce a level of uncertainty in medical
decision-making that is often difficult for nonphysicians to appreciate. While we can not
eliminate uncertainty in health care decision-making, developing strategies to minimize
uncertainty and to more effectively “manage” uncertainty is a challenge for both
practitioners and policy makers. The ascendancy of outcomes research, clinical practice
guidelines, and randomized clinical trials have all sought to minimize variations in the role
that uncertainty plays in medical decision-making.

In pursuing ethical guidelines in ethics consultation, there is a tacit goal to reduce
uncertainty in order to reach consensus when making a decision regarding the forgoing or
continuance of life-sustaining treatment. By examining the ethical obligations in clinical
research, we will discover that the concept of equipoise in randomized clinical trials has
applications for moral deliberation in decision-making in ethics consultation. Because
health care practitioners often express confidence in their interpretations and appeals due to
the nature of medical education, equipoise offers an antidote to confidence as an ethical
condition in ethics consultation.

Equipoise is frequently discussed in the context of clinical research and more
specifically in randomized clinical trials. The purpose of utilizing randomized clinical trials
is that consensus does not exist within the medical community on a preferred treatment for
a specific population of patients. Equipoise, a state of genuine uncertainty, is required of
the clinical investigator regarding the comparative therapeutic value of each arm of a trial.34
It is considered an ethical and necessary condition of all blinded, placebo-controlled, or
randomized clinical trials. If during the course of a trial, the condition of equipoise is

disturbed, that is, if an investigator has reason to believe or “perceives” that one treatment

46

47

is superior to another, the trial is terminated and subjects are offered the superior
treatment.85

Freedman (1987) formulated the concept of clinical or community equipoise in
order to provide an alternative to the pervasiveness of trials not succeeding because
equipoise was so easily disturbed by individual investigators who had a treatment
preference. Consequently, a lack of subjects caused trials to be terminated. Freedman
proposed the concept of community equipoise because the requirement that an investigator
have no treatment preference was too rigid. Freedman argues that community equipoise is
more robust, because “there is no consensus within the expert clinical community about the
comparative merits of the alternatives to be tested.”86 A distinguishing element of
community equipoise is that a patient is informed of the disagreement among expert
clinicians. Freedman’s analysis of community equipoise was intended to relieve a crisis of
confidence in the ethics of conducting clinical trials in order to permit clinical trials to
proceed. The concept of community equipoise reflects an assessment of a treatment
according to a community standard rather than an individual Standard. The ethical dilemma
of carrying out randomized clinical trials that yield statistically significant results is satisfied
if “there is genuine uncertainty within the expert medical community-not necessarily on the
part of the individual investigator-about the preferred treatment.”37

The purpose of adapting the condition of equipoise, as it is proposed by Freedman,
to the practice of ethics consultation is twofold. First, the expectation that an investigator
not have a treatment preface is Similar to the expectation that the health practitioner as ethics
consultant not have a treatment preference. This expectation and assumption contradicts
medical education and disregards the importance of team effectiveness and alliances that
result from socio—political factors in the hospital setting. Secondly, by shifting the standard
of assessment from the individual to the community, we can substantiate the necessity for a

zone of corrrrnunity equipoise because in treatment decisions for severely impaired

48

newborns or incompetent adults, there is no consensus about the worthiness of forgoing or
continuing life-sustaining treatment.

Gifford (1995) has argued against clinical equipoise or what he refers to as
Freedman’s reconceptrralization of community equipoise. Gifford takes issue with the term
‘clinical’ and suggests that Freedman’s argument does not justify the move from the
individual to the community. Gifford offers an alternative solution of a “sliding-scale “
concept of equipoise. He states that “trials could be carried out for some time even though
they had fallen out of equipoise for the average patient.”38 Gifford’s comments on the
criterion in coming to a “community agreement” regarding the randomized clinical trial
dilemma in the ethics of clinical research are applicable to determining criteria in evaluating
ethics consultation and protecting against hasty consensus. He points out:

What’s true is that these arguments may well provide reasons for being less

confident about one’s own judgment than one otherwise would be. (And it

is true that doctors are often too confident of their own judgment, and there

needs to be an antidote to this.) Relatedly, they may provide reasons for
seeing the place where randomization is acceptable as a zone instead of a

point.89
In proposing that the condition of equipoise is applicable to ethics consultation, I am
concerned with an approximate “zone” of uncertainty that will act as a balance against hasty
consensus. In order to envision how a zone of equipoise can be instrumental in assisting
health care practitioners against hasty consensus, I will comment on a case from
Benjamin’s book, Splitting the Difference: Compromise and Integrity in Ethics and
Politics. First, I will lay out the case as Benjamin presents it and then I will discuss
Benjamin’s concept of factual uncertainty and moral complexity in compromise decision-

making as it pertains to equipoise and consensus.

49
Moral Conflict in the Intensive Care Unit:

Ann Chapman is an experienced critical-care staff nurse who enjoys the challenges of the
medical intensive unit in a large medical center. She is regarded by the medical and nursing
staffs as thoughtful, sensitive, and exceptionally competent. At the moment, however, she
is at odds with most other members of the unit over whether aggressive treatment should be
continued for Marsha Hocking, a young single woman who has suffered severe brain
damage due to viral encephalitis. Marsha Hocking’s parents are so overwhelmed by the
situation that they have transferred all decision-making authority to the medical staff. They
neither want nor appear to be able to participate in whatever choices have to be made on
alternative modes of treatment.

Ann Chapman and the medical and nursing staffs are in general agreement about the
medical details of the case-that is, the extent of the patient’s brain damage and her (very
poor) prognosis. But they disagree on how aggressively she should be treated. Ann
Chapman believes there is little hope for recovery and that aggressive treatment should be
reduced accordingly. She is the same age as the patient and maintains that it is quite
unlikely that Marsha Hocking would want to be kept alive in this condition. She herself,
Chapman emphatically adds, certainly would not want to be kept alive if the same they
were to happen to her. Moreover, aggressive treatment for patients like Marsha Hocking
represents a terribly inefficient use of resources. The nursing staff, Chapman points out, is
already stretched too thin; other patients are likely to benefit significantly from increased
attention if the staff were to be relieved of doing so much for Hocking. Furthermore,
Hocking’s care is very expensive. Someone-her insurance company, her parents, the
taxpayers, or the hospital-is going to have to pick up the bill. The exceedingly slim chance
of significant benefits, Chapman says, hardly outweighs the certainty of continued high
costs.

Chapman has asked the other nurses and the physicians to think about her
recommendation. Although a few nurses agree with her, most, including the nurse in
charge of the case, side with the attending physician, Susan Lehman, in saying that this is
not the time to reduce their efforts. In an earlier, fairly heated discussion of the matter, Dr.
Lehman pointed to a number of reasons for continuing aggressive treatment. Hocking’s
age, the sudden onset of the disease, and her previous excellent condition suggest that if
anyone stands a chance of recovery, this patient does. Lehman also struck a responsive
chord in many of those listening by mentioning the inherent value of human life and the
importance Of the continued dedication of medical and nursing professionals to the
preservation and prolongation of life.

Things are now at an impasse. Neither Chapman nor Lehman and those strongly
favoring the continued aggressive treatment have changed their minds, so aggressive
treatment is being continued. But as days pass, a few more nurses have come to agree with
Chapman’s position; they persuade Dr. Lehman, a fair-minded person who generally does
not settle such matters by appeals to authority, rank, or legalisms, to schedule another staff

meeting on the matter.90
Benjamin describes the Chapman-Lehman conflict as involving factual uncertainty
and moral complexity. The purpose of this case study, as he explains, is to underscore the

possibility of compromise “on matters involving conflicting ethical values or principles

50

without compromising (or betraying) oneself or others.” Much of Benjamin’s discussion in
this chapter on ‘Moral Compromise’ is extremely helpful in understanding and resolving a
conflict of moral principles. He does not shy away from the respective parties’ positions
based on their medical training and points of reference as nurse and physician, respectively
within the hospital. His model of compromise acknowledges Chapman and Lehman’s more
or less fixed-preferences and grants each the ethical relevance that it deserves. Ultimately,
the parties agree in this case to a trial period of continued, aggressive treatment before re-
evaluating the situation. Benjamin’s focus on “integrity-preserving compromise” involves
complexity, limitations, and the need for accommodation and moral compromise. It is not
static and combines many of the features that will be discussed in the next section on Moral
Deliberation Shifts. And although a more detailed review and analysis of Benjamin’s work
is beyond the scope of this thesis, I will briefly look at his concept of factual uncertainty
and moral complexity in juxtaposition to the concept of moral uncertainty(equipoise) and
factual complexity as it applies to ethics consultation and the Chapman-Lehman conflict.

Benjamin argues that:

it is important to recognize the persistence of factual uncertainty in debates

over such matters which will not be eliminated, or even significantly

reduced, by advances in modern science. Indeed, such advances will often

create as many unprecedented, factually undetermined decisions as they will
resolve...factual uncertainty will always be with us because it cannot be

fully separated from moral or metaphysical uncertainty.91

In this analysis, factual uncertainty is not entirely dissimilar from equipoise. The concept of
uncertainty is obviously central to each. They both suggest that the interpretation of facts
can not be isolated from ethical or moral deliberation. They both imply that there is an
inherent complexity that is an attribute of the human condition, not a characteristic to be
subdued. Perhaps the difference lies in the phrase “factual uncertainty.” Assisting health
care practitioners to wrestle with uncertainty in a language that speaks to them within the

context of advances in science and technology is different than challenging them with the

51

phrase “moral uncertainty.” Instead, Benjamin uses the term “moral complexity,” which
represents the persistence of moral disagreement. Hence, the combination of factual
uncertainty and moral complexity is specific to helping health care practitioners integrate
conflicting points of view. As closely-linked as the terms are, they have a different meaning
for a different audience when they are inter-changed.

Perhaps the phrases “factual complexity” and “moral uncertainty” are more apt to
describe the experience of Marsha Hocking’s parents. In the case study, the parents have
abdicated decision-making responsibility. Factual complexity describes the array of medical
technology used in critical care units that can easily overwhelm a layperson; whereas, moral
uncertainty more poignantly depicts the parent’s dilemma as primary decision-makers for
the care of their daughter. Perhaps, Benjamin purposefully orchestrated this detail in the
case study in order to demonstrate the effectiveness of compromise decision-making among
the hospital staff. Yet, it is precisely this detail of parents and families becoming
“overwhelmed” that both creates ethics consultations and perpetuates an over reliance on
health care practitioners in making decisions for others.

. The purpose of proposing a zone of equipoise is to assist families and to aid ethics
consultants in helping families in dealing with bioethical dilemmas. In specifically
identifying the condition of equipoise or moral uncertainty as a valid part of moral
deliberation, parents and families can have their experience substantiated, rather than being
expected to have their moral reasoning in tact or anticipating that they themselves should be
able to hastily resolve the issue. I do not mean to imply that action or the practical aspects
of a timely decision be suspended, while families take all the time in the world to make a
decision. But, rather that proposing a zone of equipoise does not preclude that a decision
can be made in a timely manner.

How could a zone of equipoise assist the Chapman-Lehman conflict? Chapman and
Lehman could tell the parents that there isn’t consensus among the staff and that there is

conflict over how much agressive care should be pursued. There are those who would say

52

that this is the “worst thing” you could do to a family at this time. However, there is no
evidence that this assumption or quasi-patemalistic response is valid. By identifying the
moral complexity that exists among the staff, the parents can have their moral uncertainty
validated. In addition, a parent/consultant team who may have been in a similar dilemma
might be brought in to talk with the parents. These two interventions cultivate a zone of
equipoise.

In bringing attention to serving the families of patients who are in the position of
deciding for others, I have identified a condition that would facilitate their process in
decision-making. Concomitantly, a zone of equipoise can provide a balance against hasty
consensus decision-making within ethics committees. Although Benjamin’s argument
centers on compromise decision-making between two parties, I do not think he would
object to the concept of moral uncertainty or equipoise in consensus decision-making in
ethics committees or in consultations that involve patients’ families. In the following
section, I will examine the potential for moral deliberation shifts as a method for

confronting and tolerating one’s inherent sense of uncertainty within a zone of equipoise.

Moral Deliberation Shifts

Moral deliberation in health care extends itself to situations where collective
decisions are required about issues when there is no identifiable public or institutional
policy. The practice of ethics consultation and the formation and emergence of ethics
committees is a forum where moral deliberation forces us to substantiate and justify our
decisions. As I have discussed previously in the section on Ethical Theories in Medical
Decision-Making, there is a difference between ethical decision-making and moral
deliberation. Ethical decision-making is concentrated around the application of principles,
while moral deliberation is characteristic of tolerating one’s inherent sense of uncertainty
and challenges about principles. A key element of ethical decision-making is the
unexamined assumption that consistency in decision-making translates into confidence and
guarantees assurance of a “correct” decision. An example of this subtle yet, critical
difference is the subtitle to a newsletter sponsored by American Health Consultants, which
reads, “Medical Ethics Advisor: Your practical guide to ethics decision-making.”92 This
distinction does not imply that there isn’t the need for “practical guides” for health care
practitioners with the influx of managed care, legal standards, and bioethics’ guidelines.
What it suggests is that there is a distinction between the application of information and
ethical principles to particular cases in contrast to moral deliberation which is about
cultivating uncertainty.

The problem of moral conflict does not solely reside between people, but between
the values themselves.” For example, in the case of neonatal ethics where decisions
about forgoing or continuing life-sustaining treatment of impaired newborns are made,
there is a fundamental moral conflict that endures about the life of an imperiled newborn,
the liberty interests of parents to decide whether or not to let the infant die, and the parental
bond of attachment that develops during conception. Within that moral dilemma lies another

moral conflict of how much of our social and health care resources may be committed to

53

54

eliminating some of the poverty and drug abuse in pre-natal care that is often associated
with low birth-weight infants.

It is reasonable to anticipate that a parent’s individual internal struggle over the
competing claims will result in moral deliberation Shifts. By acknowledging that moral
conflict is a liveable condition and that through cultivating uncertainty or equipoise as a part
of moral deliberation, we are able to see our resolutions as “partial and tentative.” Rather
than hastily rushing to consensus as a goal in order to overcome the perceived obstacle of
uncertainty on the way to an impartial and just resolution in ethics consultation, we can
learn to not just revise our moral reasoning, but to shift in our moral deliberations.
“Recognizing this human limitation does not imply moral skepticism.” 94

The solitary reflection that each individual goes through supplements the moral
deliberation that occurs within the practice of ethics consultation. Each person in the
process of thinking through her own values is simultaneously entering into the more public
sphere of deliberation in a hospital setting. In refining the concept of moral deliberation to
ethics consultation, there are the family members who are immersed in their own moral
deliberations of the bioethical dilemma, while health care practitioners are engaged in their
respective deliberations which tend to focus on bioethical disputes and consensus or
compromise decision-making. Health care practitioners as ethics committee members who
work together day-in and day-out on the floor tend to prioritize consensus on an ethics case
as a primary goal, and only secondarily seek consensus as a condition. By arguing that
participants in ethics consultation have a tendency to avoid moral deliberation shifts, I am
implying that to wrestle with an imperfect understanding that characterizes a moral conflict
such as cultivating moral uncertainty is to move beyond the conventions of the legitimate
constraints of institutional and systematic group interests. Guttrnan and Thompson write:

The main sources of movement in [deliberation] as conventionally portrayed

are not changes of mind but shifts in power, as groups and individuals

bargain and negotiate on the basis of preferences and self-interests. Power

shifts may bring improvement, but only accidentally. Changes of mind are
responsive to reasons that at least direct our attention toward improvement.

55

When majorities are obligated to offer reasons to dissenting minorities, they
expose their position to criticism and give minorities their most effective and
fairest chance of persuading majorities of the justice of their position...
[These] are real risks. Moral sensitivity may sometimes make necessary
political compromises more difficult, but its absence also makes

unjustifiable compromises more common.95

The resolution of moral conflicts are typically open to new conclusions and subject to moral
challenges. Michael Walzer writes, “all destinations are temporary. N o citizen can ever
claim to have persuaded his fellow once and for all.”96 By identifying the condition of
uncertainty, individuals call into question their own judgment and create a space for others
to reject their judgment and respond with differing ones. Being prepared to change one’s
mind or shift in moral deliberation is to anticipate the condition of equipoise. To do
otherwise is to yield to individual and group interests by embracing moral skepticism or
moral dogmatism, rather than the more demanding condition of equipoise.

Identifying the specific procedural technique of moral deliberation shifts within a
zone of equipoise as an intervention in ethics consultation is difficult to do. Benjamin
makes a similar claim when he says, “there is no pat formula for determining how many of
these conditions need to be met before compromise ought to be pursued.”97 Although
encouraging an ethics consultant or a family member to consider shifting his awareness can
sound lofty in the abstract, it can possibly be a practical and effective method for helping a
person deal with difficult feelings. Before referring to a case study in the form of a play in
order to illustrate the meaning of my model, I will briefly look at the literature for an
overview on what specific interventions are identified by ethics consultants, if any, either in
assisting families and health care practitioners in moral deliberation.

The ethics consultant is sometimes described as a facilitator of moral exploration.
As an applied ethicist, the ethics consultant is expected to offer helpful suggestions, voice
an educated opinion, give advice, or expected to take a position. While educators of moral
philosophy are allowed detachment in the classroom, the ethics consultant is not allowed to

“dwell in detachment but must become engaged.”98 Bamard( 1992) has noted that the

56

“critical distance” that was once an essential tenet to the practice of ethics consultation has
evolved into the assimilated ethicist in the clinic who less rarely is able to take a critical
stance towards medicine and medical education. As a comparison, Barnard examined
medical sociology and noted that "[s]ociologists have found that they may function either as
students and critics of established medical practices and educational philosophies, or as
collaborative participants in them-but rarely both."99

In the emerging practice of ethics consultation, it was initially thought that the
philosopher’s contribution to health care decision-making was detachment and that this
fostered moral inquiry. However, Moreno suggests that the nature of the clinical
environment precludes a “heightened intellectual” exercise. He writes:

Normally when the ethics consultant is called the ethical problem is already

all too clear to the health care providers, and they are in need of a plan of

action, sometimes desperately so. I am not claiming that moral philosophers

never become engaged...By contrast I argue this is not true of applied

ethicists in the clinical-setting, who are required to be more than critics. At

the other extreme, the danger that engagement will turn ethicists into

preaching moralists is met only insofar as the ethicist is prepared always to
re—evaluate his or her own views, and this involves adopting the critical

posture again.100
Moreno’s concept of ethics consultation as moral engagement suggests the necessity for the
ethics consultant to go beyond the bounds of moral philosophy and to become
“engaged...in the political processes that are an essential part of the management of rivalries
among communal values.”101 Although Moreno notes that the ethicist is required to “re-
evaluate his or her own views,” he does not articulate what this re-evaluation looks like in
the context of an ethics consultation. Perhaps the type of re-evaluation that Moreno refers to
is moral deliberation Shifts? Straddling the line between detachment on the one hand and
engagement on the other hand is a zone and condition of equipoise which can allow the
ethics consultant to maintain a critical posture.

One reason for interjecting the condition of equipoise is that the values in our

society are rich and varied. Ethics consultants as individuals participate in shaping

p-%*‘:m

57

decisions and are expected to be held accountable for their analysis. Crigger asserts that
“[r]ecourse to ethics consultants allows the illusion of intimacy in medical decision making
to be more easily sustained and the power differentials among parties to be more concretely
mediated than does the use of courts or committees.”102

Walker describes moral deliberation as something that “stands up within some
moral community...[and in which] we can convincingly account for in moral terms.”103
Like Moreno, Walker identifies “rethinking” and “reconciling procedures” as challenging
group-think and pressing ethics consultants to be responsible for their commitments. But
here again, she does not point out how we are to do so.

Ethics consultants often focus on fostering shared decision-making in order to
resolve bioethical dilemmas and disputes. The concentration on shared decision-making is
the result of accommodating a physician’s request for advice in a particular case, the
patient’s or families’ need for an advocate, and the institution’s need for guidance in policy
issues. Although the purpose of the ethics consultation is to make certain that patient care is
improved by respecting patient preferences, there is the tendency for ethics consultation to
become another procedure among others to be employed. Barnard points out that:

If, for example, in order to secure its place in the clinic, ethics evolves into

one technique among others for clinical problem solving, ethics may lose its

purchase for questioning whether medical education and practice in general
have become obsessed with technique, and have sacrificed the healing

potential of persons-in-relation.104

u.
. " IA“ ._-
o

The goal of ethical decision-making and the subsequent need to explore whatever
consensus already exists among the participants sometimes pre-empts moral deliberation.
Ethical decision-making in the context of ethics consultation can lapse into arriving at the
“correct” ethical meaning waiting to be detected or managing an immediate decision
Frader(1992) writes that it is difficult for the reader to know what parties thought, said, and

did, even when consultations are described in detail. He points out:

58

One may legitimately doubt the value of theory that does not match carefully
observed reality. We need to begin theoretical considerations with a much
better notion of what actually happens during ethics consultation... A thick
description and clear understanding of what goes on in ethics consultation
must become the basis for a theory of practice, not an apology for the status

(1110.105

Crigger (1995) in writing about the practice of ethics consultation discusses
“negotiating the moral order.” She is critical of the ethics consultant’s practice for coming
up with a “correct” decision based on established patient preferences in the following
excerpt. Crigger points out that the ethics consultant offers a strategy, according to the
principle of autonomy, that enabled the participating health care practitioners to accept the
patient’s values.1°6 Although the outcome of ethical decision-making was “correct”,
Crigger comments that “procedurally respecting the patient’s autonomy allowed the parties
to sidestep rather than to engage the tension between their differing moral commitments.”
Crigger suggests that by invoking the autonomy paradigm as a “ready-made response to the
dilemma of treatment refusal...[a decision was made to resolve the immediate problem
without]... direct, active engagement of the moral presuppositions of the parties.”107 The
problem with this is that in establishing a paradigm, it is usually the clinician’s model and
terms that will predorrrinate, rather than “negotiating” the substance of a shared paradigm.
Crigger’s focus is on instructing participants in an ethics consultation to “engage” or to
recognize one another’s values or moral commitments. Her analysis of how ethics
consultants import ethical decision-making in order to “manage” decision-making or to
identify a pre-existing paradigm versus “negotiating a shared paradigm” speaks to the
subtle, yet significant difference between ethical decision-making and moral deliberation.

While Crigger pr0poses negotiating a model of creative decision-making in ethics
consultation, she also alerts the reader to an inherent danger of the practice. In a case
analysis presented by LaPuma and Schiedermayer, she responds to the consultant’s
analysis of the patient’s decision-making process by highlighting the conflict that exists

between the consultant’s expectation that the patient or his family can, on demand,

59

participate in a process of critical self-reflection by having to bring to the foreground values
and experiences that go unexpressed in day-to-day living. Crigger thus remarks:

Under a mandate to empower patients and to nurture their active

participation in health care decisions, ethics consultation creates a structure

and a process that has great potential to do precisely the opposite...[ethics

consultation] has the power to reduce moral sensibilities to simply one more

kind of clinical data and to deny patients any significant expertise as arbiters

of their own values...this occurs as often as not through invoking a

normative repertoire (the principlism of mainstream bioethics) that is

strongly focused on respecting individual autonomy.108

The summons to explore one’s own convictions due to an illness or accident, on
short notice, and then to be challenged to articulate and negotiate that decision-making
process with a health care practitioner can carry a signal to the patient that she is not
“managing” her values and beliefs in the correct way. Even if the ethics consultant or
health care practitioner with good intentions are hoping to “serve” in the best interest of the
patient, the normative explication of moral meaning to express values in the “correct”
manner can undermine how a patient shapes and articulates her decision-making. The most
obvious example is the case of a patient who wants her family to make the decision of
withdrawing life-sustaining support because it is the custom of the family and not the
patient to decide. This expression of values is different to the principle of patient autonomy
as it is understood in the culture of medicine in the United States. Perhaps, the health care
practitioner would permit the family to make the decision even if the patient were competent
according to “family autonomy.” Yet, the issue that needs to be addressed is not solely the
varying ethical principles, but how the various shapes of moral deliberation coincide.
Another example might include a patient or family member whose mechanism for decision-
making is a week-long silent meditation retreat. And yet, another might include a family
member who conducts a forum of friends and loved ones to solicit viewpoints from each

person in order to help in the decision-making process. Or perhaps someone’s deliberation

may include no deliberation at all, as was the example in Benjamin’s case study.

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How can the ethics consultant not impose her method of moral deliberation on
someone else, or at the very least be aware of the risk of doing so? It becomes important
that before “negotiating a moral order” as Crigger suggests, that clarification of the patient’s
capacity, interest, and commitment to moral deliberation be taken into account, before that
patient’s articulation of her values is juxtaposed or is relative to a health care practitioner’s
own decision-making process. The condition of equipoise for both the patient and ethics
consultant or health care practitioner has the potential to transform the condition of the
patient “not managing or articulating her values in the correct way” in the process of ethics
consultation. The emphasis of the condition of equipoise or uncertainty can counterbalance
the expectation that the patient must “bring to the foreground values and experiences that go
unexpressed in day-to-day living.”

One could argue that the condition of equipoise and moral deliberation shifts, is yet
another “correct” paradigm being imposed onto the patient’s family by the ethics
consultant. Yet, the juxtaposition of deliberately cultivating uncertainty as an oxymoron and
a counter-intuitive strategy of “deliberate uncertainty” can balance out the potential harm
that occurs if autonomy is invoked by the consultant or the health care practitioner, rather
than understanding the patient on his own terms. I would also argue that there is a lesser
harm in risking yet another “paradigm” in ethics consultation. Moral deliberation shifts
within a zone of equipoise provide a counter-balance against hasty consensus that
oftentimes arises in ethics consultation. Providing a check and balance can take the shape of
rendering some accountability in a profession where none presently exists. In addition,
moral deliberation shifts which imply that each respective family member literally shift her
view that the previous position was not entirely accurate provides an antidote to a
camouflaged emphasis on confidence in decision-making.

When families are in the position of making treatment decisions for those who are
incapable of making their own decisions, they exercise this right as a proxy. The proxy, as

someone who is familiar with the patient, “makes the decision that the incompetent patient

61

would make if he or She were competent.”1°9 In this regard, the proxy exercises
substituted judgment on behalf of the patient. However, there is a difficulty with the
standard of substituted judgment. The concept that the family best understands the
patient’s beliefs and values does not prove entirely accurate upon closer examination.
Empirical studies show that “when people are asked to predict what medical treatment a
member of the family would want under a variety of scenarios if the person were to become
incompetent, they get it wrong about half the time: flipping a coin would be almost as
accurate.”1 10 When the proxy is asked what decision she would make in the aftermath of a
stroke or in the case of someone having dementia, there is discrepancy in agreement under
an array of some scenarios. If surrogate decision-making is more like guesswork or
“flipping a coin,” a zone of equipoise and moral deliberation shifts has the potential to
frame the deliberative process.

Why do proxies “get it wrong about half the time?” What makes us think that we
can predict the beliefs and values of a family member? This question appears in clinical
contexts frequently and anecdotally when farme members say to physicians,”what would
you do if she were your mother?” The question assumes a shared value system between
the health care practitioner and family member that may or may not exist. It also assumes a
shared value system between the physician and his mother, which may or may not exist.
Finally, it assumes that the physician would know what his mother would want if she were
incompetent and that he would “get it right.” This is not to disregard the respect and good
will that family members have in trying to act with love and kindness on behalf of an
incompetent family member or imperiled newborn, but rather to look at the tenuousness
and perhaps impermanence of the situation in understanding how the role of pre-sumed
confidence in substituted judgment has gone unchallenged. If the ethics consultant were to
suggest to the family that prior to making a final decision that it was not only permissible,
but that they would be encouraged to waffle or to shift in their deliberations, would there be

greater accuracy in predicting what treatment a family member would want? And if the

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ethics consultant were to inform the family that they might want to consider a degree of
uncertainty as a measure of effectiveness in predicting what treatment a family member
would want, rather than a degree of confidence, would there be greater accuracy? This is
the proposal for the role of moral deliberation shifts in a zone of equipoise in framing the
deliberative process.

The engagement of parties to an ethics consultation that incorporates moral
deliberation shifts and equipoise can become less of a spectacle of a deliberative body at
work and instead reflect the guesswork or “uncertainty” that proxies exhibit in some of the
research on advance directives. If we know that “uncertainty”-not necessarily “uncertainty”
as “not knowing” or as “not having knowledge,” but uncertainty as a genuine zone and part
of the deliberation process-is a guideline in the framework of medical decision-making for
surrogates, then by identifying when the zone of equipoise has been reached, we can come
to expect and anticipate uncertainty not as compounding an already difficult decision, but as
a companion-like concept that actually brings us closer to making a reflective decision.

When families or proxies are presented with the difficult decision in the case of an
imperiled newborn or someone who was never competent and so was unable to make their
preferences known, the “best interest” standard is applied. The treatment decision in this
case is arrived at by weighing the benefits and burdens in relation to the patient’s
prognosis. The predicament at the core of this criterion is based on judging the quality of
someone else’s life. The benefits versus burdens ratio is not solely related to medical
judgments, but how that person values or would value his life. 1 11 Because the “best
interest” standard is based on the best that one can do for oneself, it does not necessarily
take into account familial obligations or traditions whereby a family member might choose
to act collectively versus advancing her own best interests. The Lindemann-Nelsons point
out that “[w]ithin this moral space decision-making becomes a messy thing. It ought to be.
Our vital relationships are messy too.”1 12 By recognizing the subjective element of judging

the quality of life for someone else and bringing this predicament into the decision—making

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process, a check and balance mechanism of moral deliberation shifts and a zone of
equipoise can provide a counter-balance against confidence on the part of family members
and hasty consensus on the part of health care practitioners in judging the quality of life for
someone else.

Deciphering end-of-life treatment decisions are often difficult occasions for those
who must make choices for others. One must often review the considerations for and
against a particular viewpoint and action and confront conflicting evidence for reasons for
an action before making a definite decision. Hampshire(1983) argues that it is natural for us
to be unnatural in morality and consequently it is natural for us to be involved in conflict
based on both reason and history.113 Hampshire describes morality as having two faces:
“the rational and articulate side and the less than rational, the historically conditioned,
fiercely individual, imaginative, parochial, the less than fully articulate, side.”114 “In
conduct, and in normal thinking about conduct from day to day, we naturally switch
attention from one aspect of moral claims upon us to the other.”1 15

Lawrence Kohlberg, a moral theorist, first codified three broad stages of moral
development that people go through. “The preconventional stage, where a person thinks
that what is right is whatever they want; the conventional stage, where people base their
decisions on what society wants; and the postconventional stage, where moral decisions are I
based on universal principles of moral reasoning.”1 16 Although Kohlberg’s theory in moral
development is specific to moral education, its interdisciplinary application to philosophy
and psychology might provide insight into not only how people acquire their values but
how when confronted with uncertainty in bioethical dilemmas, there might also be
developmental stages in making decisions for others. Kohlberg argues that there is a
singular, universal, sequence of stages in moral development. By claiming that there is
only one set of structures that underlies our moral reasoning, Kohlberg has been criticized
by Gilligan for being reluctant to acknowledge that moral reasoning is more of a complex

phenomena than he suggests.1 17 Although the broader scope of this thesis addresses the

64

possibility that there are developmental stages specifically associated with making decisions
for others versus the broad stages of moral development for oneself that Kohlberg codified,
further study is required in delineating what the intricate aspects of these stages might look
like.

The recent showing of Emma’s Child113, a play by Kristine Thatcher, reveals
moral deliberation shifts inherent in the parenting conflict of deciding whether to continue
aggressive treatment in the case of an imperiled newborn. Based on the author’s experience

of adopting an infant, who is born at birth with severe hydrocephalia, from an unwed

 

mother, the play depicts the complexity of the parent’s decision-making process. The father
to be, having survived cancer and deciding to parent late in life, is certain that the
debilitation that the child will experience is not worth the pain for either the child or for
himself as a parent. The mother regularly visits the hospital, convinced that the caring and
love that she can give to the child will result in a miracle. The resident and the nurse bond
with the mother and revel in the infant’s incremental progress. The author shows the
reluctance of both parents to yield from their position and their zeal in maintaining their
viewpoints. Yet at the end of a two-week period, the father who up until this point has
refused to even visit the neonatal intensive care unit, changes his position and decides to
keep the infant alive. The father’s shift occurs after a conversation with a friend who at one

point in his life did not believe he could be a father to his girlfriend’s son from a previous

3'
I
ii

marriage. When this friend found himself experiencing a parental bond of affection and
caring for a child he had not fathered, it appeared to stir something in the father-to-be’s
thinking. Perhaps he was beginning to understand his wife’s attachment to their imperiled
newborn. The mother, ever so slightly, begins to question her belief that a miracle will
happen as the time grows closer to transfer the infant to a long-term care facility. The ICU
resident and nurse are the mother’s main source of support and therefore, have an

important role in life-support decision—making. Usually health care practitioners, in close

65

consultation with the newbom’s parents, decide whether to continue life-sustaining
treatment or not.

What, we might ask, are the staff attitudes towards continuation of life-support in
newborns? In a recent study of a Dutch pediatric ICU, “attitudes towards support were
unanimous for 39 of the 46 patients.”1 19 However, out of 298 anonymous questionnaires,
only 5 questionnaire respondents chose “no opinion” in a multiple choice that included: 1)
full-support, including CPR;2) full-support, excluding CPR; 3) modified support,
excluding CPR and; 4) no opinion.120 The study concluded that decisions need to be made
early on. In assessing what influenced the respondents attitudes, the researchers state that
“[a]n expected low probability of self-awareness and a poor quality of life of the patient
could have played a role in the respondents’ judgements. These approaches to ethical
decision making in the neonatal ICU have been suggested before.” With all due respect to
the authors, it is almost impossible to understand what they mean in this discussion. On a
more positive note, the authors cite their decision-making protocol on foregoing life-
support of an infant, which they initiated to deal with their “own feelings of grief.”
Although the stages of decision-making are a series of conversations and feedback loops
involving staff and ICU specialists, it is encouraging that a mechanism is in place for staff
who extend primary care day-in and day-out to imperiled newborns. Yet, the absence of a
check and balance for moral deliberation does not exist when staff and parents come
together in close consultation to make decisions about continuing or forgoing life-
sustaining treatment. These demanding and rigorousness decisions require that they be
made early on and expeditiously. Although the discussion in this recent study confirmed
that staff opinions matched management treatment, there appears little leeway for staff “not
to have an opinion.” This begs the question of how ICU nurses and specialists are assisting
parents in their moral deliberations and what effect a zone of equipoise might have on both

staff and parents.

66

One area of bioethics in which we might look towards in order to explore the
relevance of examining moral deliberation shifts is in advance end-of-life treatment
planning in the form of advance directives. Support for advance directives has been
associated with the bioethical principle of respect for autonomy. By looking at the
empirical studies on the diverse preferences that people have for life-sustaining treatment,
we are able to identify whether or not peoples’ values remain relatively fixed as most
bioethicists have claimed in theory121, or whether there are shifts in values in advance
planning for end-of-life care in understanding its actual implementation. If there is evidence
in the advance planning stages for mentally competent people that a shift in moral
deliberation or in values occurs, then it might be said that in ethics case consultations in
which those who are deciding for others, be they incompetent adults or seriously-impaired
newborns, we might expect moral deliberation shifts for surrogate decision makers.

Contrary to what we might assume, only 20% of persons say they have advance
directives.122 This is not because people are not aware of advance planning or reject the
concept of advanced directives, but rather that urgency typically informs the timing of when
people complete advance directives. Although no one would doubt that the suitability of
advanced directives to their complex task is not without limitations, they are nonetheless a
useful measurement of how people identify treatment preferences. In one study, most
people dodge advance treatment preferences or communicate the difficulty of precisely
formulating an advance treatment preference.123 To be fair, such precision is complicated
because researchers use terms such as: “definitely prefers; probably prefers; and somewhat
likely to prefer.”124 This study, understandably so, found that there were varying degrees
of certainty about preferences. In another study, a significant percentage of people wanted
treatment on a trial basis, rather than expressing an unconditional or irreversible
condition.125 Research on advance directives has focused on measuring the corresponding
accuracy between the patient’s preferences and the health care practitioner or family’ 5

understanding of the desired preference. Accordingly, the research does not “suggest that

67

patients believe that they can make a rational or unambiguous decision.”126 In addition,
familial proxies’s estimates of patients’ preferences are not significantly different than
chance, even when proxies believed that they knew the patient’s preferences. 127

Recently, the results of the most extensive and “ethically Significant” study of death
in American hospitals was published. (SUPPORT: The Study to Understand Prognoses
and Preferences for Outcomes and Risks of Treatment study was a ten-year inquiry in five
teaching hospitals with significant interventions in the hope of improving hospital deaths.)
In this study a third party was responsible for facilitating communication between patients,
surrogates, and physicians. The results of the study revealed that even when patient
preferences were explicitly defined in the form of advance directives, their wishes were
often disregarded by some physicians. One of the lessons from this study that is analogous
to ethics consultation was the reliance on nurse-facilitators and charging a third party with
facilitating and communicating about interventions in end-of-life treatment decisions. Some
have speculated that the use of nurse-facilitators was nriscalculated because they do not
have the necessary status with which to effect change within the hospital. By having
physicians defer conversations about life-sustaining treatment and interventions to third
parties, patient requests were often not respected. Howard Brody comments that
“[s]uperficial mechanisms designed to enhance patient autonomy are likely to appear forced
and inadequate to both patient and physician if the basic nature of the workplace and the
patient’s foreignness within it do not change.”128 Another issue is that the SUPPORT
study was designed to address physicians’ uncertainty about prognosis and how prognostic
uncertainty contributes to the overuse of technology. In its attempt to enhance the decision-
making power of patients, the negative results were stunning. The assumptions that the
SUPPORT investigation were based on are just as likely to occur within the context of
ethics consultations in the form of the third party as a consultant or an expert. “Results of
analysis of data from the SUPPORT clinical trial seem to fly in the face of logic because of

the strong theoretical foundation for the interventions and consensus regarding the need for

 

68

them.”129 Although the focus of the SUPPORT study was not examining ethics
consultation, it does alert us to the significance of identifying moral deliberation shifts
within a zone of equipoise as a condition in order to counteract the assumptions in end-of-

life decision making.

Case Discussions

Two of the ethics consultation cases that I have chosen to examine are case
consultation reviews that are used in evaluating and reviewing cases. When these reports
are presented retrospectively for evaluation in the ethics committee, there is usually a
committee member present who has been part of the consultation. She or he is apt to fill in
some of the missing pieces and interpretations that are often excluded from the report.
Because there are time constraints on the part of health care practitioners, the case report is
not extensive, by any means. Yet, these case reports, in and of themselves with no other
data, were used recently by an ethics subcommittee to evaluate ethics consultations at the
hospital. Therefore, there is a precedent for using case reports, at least from this particular
hospital, as a method for evaluating ethics consultations. The cases as they are presented
here in their original form do not give us as much information as compared to either a tape-
recorded and transcribed consultation or the advantage of observing an actual consultation.
Nonetheless, they contain more written information than what was found in other case
narratives in the literature and in other actual ethics consultation case reviews from the
hospital.

Cases from the literature and those that are actual cases are constructed from data.
“Every telling of a story-real or imagined-encompasses a series of choices about what will
be revealed, what will be privileged, and what will be concealed...”130 The written case
consultation and its construction is not without an interpretation or narrative viewpoint.
Consequently, how ethical dilemmas are presented and framed, according to Chambers, is
representative of the “rhetorical force of the case.” I hope to demonstrate in the following
interpretations that moral deliberation shifts and the condition of equipoise can provide a
check and balance to what Howe calls the “three deadly sins of ethics consultation [which]
are erroneous presuppositions...when [health] care providers (1) accept invalid empirical
assumptions; (2) allow their moral views to bias their reasoning; or (3) let personal needs

prevail over the needs of patients?”1

69

70

ETHICS CONSULT

Case #1
CONSULT REQUESTED BY: Dr. , for:
PATIENT NAME: MEDICAL RECORD 6‘:
ISSUE:
Dr. requested an ethics consult to help resolve issues concerning code status on his patient.
Dr. perceives that the patient' s wishes, as communicated through his wife, are not shared

by his children from a previous marriage. A note in the chart indicated that the father had
communicated to the family that m the event of hospitalization, he would not want life support
or heroic measures done. This information was conveyed by the son: however, the son felt that
unless he could be told that there was no hope, he wanted everything done. Just prior to
consultation, Dr. indicated there was now a question of the patient’s capacity to make
health care decisions for himself.

CONSULTANTS;

, M.D.; ; , R.N.; . . , Ph.D.
DATE OF CONSULT:
DATE OF REPORT;

The consult was initiated at 2:45 p.m. in the Cardiac Care Unit. Those present included the
members of the Ethics Committee, as stated above, the patient, the patient’s wife, the patient’s
two adult sons, and the patient’s daughter-in-law. In addition, Dr. . the senior critical care
resident, andthepatient’smrrsewereinattendance.

HISTORY AND CURRENT MEDICAL STATUS;

'I'hepatientisan81-year-oldmwhowas admitted tothehospitalthroughtheEmergency
Department. The patient was admitted in respiratory failure after being found unresponsive by
his wife at home. He required a tracheostomy and ventilation in order to provide life support.
The initial assessment also established the presence of encephalopathy findings believed to be
secondary to his hypoxic event. The patient was admitted to the Coronary Care Unit for
observation and management. During the course of his current hospitalization, he has had
intermittent respiratory arrest which required resuscitation and continued ventilator support.
During the interval between these events, the patient appears to be somewhat stable. Diagnostic
evaluation, including CT scan and MRI, demonstrated the presence of iacunar infarcts in the
tight basal ganglia and some degree of cerebral atrophy.

 

V‘*‘I
,. r

71

CONSULT REPORT:

Prior to the consult, the patient was unable to communicate effectively; however, the patient’s
respiratory support equipment was modified and the patient instructed in such a manner that he
was able to communicate during the process. Dr. initiated the process by reviewing the
patient’s medical condition and prognosis. He emphasized that the underlying pathology was
such that the ability for long term survival without ventilator support and resuscitation were not
likely. The patient was asked whether or not he understood the nature of his illness and he
responded that he did. During the description of the underlying medical status of the patient.
there were a number of interruptions by the two sons, in which they attempted to clarify the

medical terminology. Dr. presented four possible outcomes for the patient to consider,
with regards to his long term care options. These included:

1. Continued hospitalization with ventilator support.

2. Transfer to a nursing home that could manage ventilator equipment and have sufficient
skills to resuscitate in the event of an arrest.

3. Return the patient to his home with some requirements for continued nursing support.

4. Transfer to the University of Michigan for evaluation and placement in their long term

stroke rehabilitation ward.

Dr. stressed that he felt that the only two viable options were numbers 1 and 2. It became
clear that the patient did not accept the idea of returning to a nursing facility. He did state that
if he could go home, be able to talk and be with his friends, that would be what he wanted:
however. a clear understanding with regards to his wishes regarding the major issues of his long
term medical weds was not obtained.

COMMENTS;

At the beginning of the consult. most of the discussion of the patient’s wishes was carried on
between the doctor and the patient's sons, with minimal participation by the patient himself. As
Dr. entered the discussion, he focused more particularly on the patient and rephrased
questions in such a way that the patient indicated he understood what was being asked and gave
appropriate responses. Although the patient’s wishes were not clearly delineated during the
course of the consultation. it seemed that the patient may well have the capacity to choose among
practical treatment options if he were given the appropriate information.

RECOMMENDATIONS;

It is imperative that Mr. capacity to make health care decisions for himself be clarified.

A. If he has capacity, then:

1. The practical options available must be clearly communicated to the patient and
the benefits and risks of each reviewed.

2. Determine what would constitute a quality of life that was minimally acceptable.

 

: 7'.

72

3. Based on the above, assist the patient to formulate a care plan that would be
acceptable to him.
4. Establish with the patient. whom the patient would want to make health care

decisions for him (based on #2) in the event he loses the capacity to make health
care decisions.

B. If he lacks capacity, then:

1. Assist the reasonable health care surrogates in coming to a consensus about a
treatment plan for the patient in view of what they believe he would want for
himself. It seems that the sons and wife are reasonable surrogates.

2. If no consensus can be reached regarding a treatment plan, work towards reaching
a consensus re: who of the available surrogates will make health care decisions
for the patient.

3. If consensus cannot be reached on either of these issues, then the surrogates
should be encouraged to petition the court for guardianship.

Finally, it is important to recognize that any decision regarding resuscitation should be made as
part of a comprehensive treatment plan.

73

Case #1

A striking element about this case consultation is that it included eleven people.
This is noteworthy because the focus on consensus may have been a critical aspect at the
core of this case. With that said, let us maneuver our way through the written ethics
consultation by examining what has been “revealed and concealed”, and identifying how
incorporating moral deliberation shifts and equipoise into ethics consultation provides an
ethical guideline as a check and a balance.

The request, in this case, was made by a physician. The author separates the case

 

into the following categories: issue; history and current medical status; consult report;
comments; and recommendations. Accordingly, I will follow the outline of these categories
in the initial analysis.

1553;: The author points out that initially the physician wanted help “resolving
issues concerning code status on his patient.” In addition, there was the question of the
patient’s competency in making health care decisions for himself. The physician most
likely accurately perceived divergent familial views regarding life-sustaining treatment.
Although there is mention that the patient’s chart contains a “note” about refusing life-
support, it is not clear who the father told this information to. One might assume that the
father told his wife what he wanted, but the word “family” is used here as the subject. This ' ‘
has significant implications because apparently, at least one son disagrees with this “note”
and part of the conflict involves children from a previous marriage and a second wife.
Therefore, it is not clear from this section whether the father communicated his wishes to
his son or to his wife when the word “family” is used by the author. Secondly, in the
statement, “This information was conveyed by the son,” it is not clear to whom it was
conveyed. Was it to the physician? Was it conveyed to the wife? To complicate matters, it
is the physician’s perception that the patient’s wishes are being communicated through the
wife who is at some sort of odds with his children from a previous marriage. At this stage,

we will want to note and identify whether the concentration on consensus might distract

74

attention away from moral deliberation or whether the focus on consensus enhances the
process of moral deliberation both for the physician, the patient, the respective family
members, and the consultation team. Does consensus serve as a condition, as Moreno
would purport, or does consensus become the goal of moral deliberation?
W: The patient had respiratory failure and required
an opening into the trachea in order to receive ventilation. The medical status also indicates
hypoxia, a subnormal level of oxygen in the blood, in addition to encephalopathy, the
presence of disease of the brain. A CT scan and MRI revealed some degree of cerebral

 

atrophy. The patient requires ventilator support and appears to be somewhat stable.
Although the current medical status is diagnostically informative, it does not tell us for
example, on average, if it is typical for an 81—year old man to have some degree of cerebral
atrophy. This assessment would seem relevant in determining his capacity for making
decisions, which is one of the pivotal questions in this case.

M39993: Once the patient’s respiratory support equipment is adjusted, the
patient is able to communicate during the consultation. The physician said that the patient
would need ventilator support for “long term survival.” The patient responded that he
“understood the nature of his illness.” The two sons periodically interrupted the physician
to “attempt to clarify the medical terminology.” The physician presented four possible 1
options, and suggested that the only two “viable” options were continued hospitalization or I
nursing home placement. The patient did not want to “return” to the nursing facility. He
stated that “if he could go home, be able to talk and be with his friends, that would be what
he wanted.” “[H]owever, a clear understanding with regards to his wishes regarding the
major issues of his long term medical needs was not obtained.” What is not clear from this
sentence, is what a “clear understanding” would entail? Is a clear understanding at all
related to cerebral atrophy? Does lack of a clear understanding imply that the patient is in
denial of needing mechanical ventilation? Is continued nursing support at home somehow

at issue? The author also states that “It became clear that the patient did not accept the idea

75

of returning to a nursing facility.” The use of the word “return” here is in contradiction to
the author’s previous statement that the patient was found “unresponsive by his wife at
home.” At what point, if at all, did the patient reside in a nursing facility, and if so, what
impact does this have on the decision-making process in this case? Because the patient is
expressing reservations about a nursing facility, there is a discrepancy that needs immediate
clarification. Either there is a written mistake in the report, or the author has missed a vital
piece of information. Secondly, an inquiry into the conditions in the nursing facility might
facilitate the decision-making process.

Comments; In this section, the author notes that once another physician intervenes
and directly speaks to the patient by reformulating questions, the patient responds
accordingly. At this point, it is noted that “the patient may well have the capacity to choose
among practical treatment options if he were given appropriate information.” The
author/consultant seems to be making an initial determination that the patient is competent,
but cushions any definitive statement by using the conditional “if" and the ver “seems.”
What is noticeably absent in this section is any semblance of the content of the dialogue
between the patient and the physician. The author also notes that “the patient’s wishes were
not clearly delineated during the course of the consultation.” This might not be an unusual
aspect given that there are eleven people present and that the consultation took place in the
Cardiac Unit, where there might not have been any privacy.

Recommendations: Under this section the author breaks down the recommendations
based on A) whether the patient has decision-making capacity or B) whether he lacks
decision-making capacity. What is noteworthy in this distinction is that there is the
presupposition that the patient is either competent or not. This categorization is analogous
to how competency is determined under the law. “Yet this distinction is really wholly
fallacious, as patients’ capacity always lie somewhere in between.”132 A perspective of
decision-making capacity that is not fixed would permit health care practitioners the

opportunity to consider that patients’ capacities are perhaps susceptible to change. This

76

aspect of determining competency, in this case, is akin to examining shifts in moral
deliberation. Although the consultant in this case, accurately identifies the need for
clarification regarding competency, the recommendations do not take into account that the
patient’s capacity might be subject to change. The consultant might be able to suggest other
options that reflect the reality that the patient’s capacity, at this particular life-stage, is not
permanently fixed. If the consultant was concerned about cultivating a zone of equipoise,
perhaps other options that reflect the patient’s potential and flexible capacity might become
more readily available. As long as care providers are not making a recommendation for the
courts, but are acting to benefit patients, they might regard patients’ capacities as subject to
change. Clinically, this perspective would allow health care practitioners to be more open to
seeing patients’ capacities as subject to change, and could enhance the ethics consultant’s
propensity to effect change. Any allowance for shifts in decision making capacity as part of
moral deliberation is absent from the consultant’s report and perhaps was not addressed in
the ethics consultation.

Because assessing competency in the form of the patient’s ability to make decisions
for himself is central to this case, we will want to note that the patient does not have an
advanced directive or a health proxy at this point. The absence of an advanced directive
further indicates the need to anticipate shifts in both the patient’s own responses to the
question of ventilator support in addition to his options for where he would receive his
care. Similarly, anticipating that the family might shift their views could help the team of
consultants bring into Sharper focus the issues in this case. By responding to ongoing
degrees of change, as opposed to the fixed-states of “has capacity” and “lacks capacity,” a
more effective dimension to deliberation may be found.

In general...if care providers presume the uncertainty that is inherent in

making the “fuzzy presupposition,” could the price outweigh the gains?

Couldn’t this open the door, for example, to unjustifiable, idiosyncratic,

and arbitrary judgments? Answering this question will obviously require

extensive analysis. Two initial responses come to mind. First, like
Socrates, care providers who know that they do not know may do better.

77

Second, care providers who act on the basis of uncertainty can imagine
checks to limit the likelihood of their acting inconsistently and harmfully.133

One option as part of a treatment plan might have been to include an interim period of
nursing support at home prior to transfer to a nursing facility.

Uncertainty constrains the options presented in this report rather than embellishing
them. Under section B) “If he lacks capacity, then...” the immediate focus moves to
reaching consensus. The patient’s ability to participate in whether aggressive treatment is
worth anything to him is not clear. His decision-making capacity may be intact, yet he may
not be up to the task in the moment. Because the consultants were unable to elicit a
statement of preference or values, does the ethics consultation require more moral
deliberation than the patient or his family can bring to bear in decision-making? Perhaps
this challenge of moral deliberation in medical decision- making complicates rather than
clarifies an exploration of one’s moral values? Yet, the health care team might need to be
cognizant of what might look like empowering a patient or a family in eliciting their moral
preferences, might actually be exerting subtle tension on them to articulate values and
commitments in a recognized paradigm.134 This particular assessment of moral meaning
according to the health care team or ethics consultant is yet another reason for the consultant
to be conscious of shifts in moral deliberation, both on her own part and on the part of the
patient and his family. Be that as it may, it is not clear what aspects of moral deliberation
occurred, if any, or how the health care team assisted the family in deliberation. It seems
fairly clear from the report, in this case, that the acceleration and need for consensus
interrupts moral deliberation. Consensus becomes a goal, not a condition and any attempt
to reach equipoise or cultivating uncertainty is curtailed. By attempting to reach consensus
before deliberation, the health care team appears to need to assert their confidence by
suggesting that consensus is the goal. This attempt might appear logical because the initial
request by the physician correctly anticipated divergent family views regarding the patient’s

wishes. However, any moral disagreement or an attempt to create a space for moral

78

reflection seems genuinely absent from the consultation. The concentration on consensus
distracts attention away from moral deliberation as a criteria in evaluating ethics
consultation and how a decision is made, and places the focus on the outcome. If
consensus has to compete with moral deliberation, then examining shifts in moral
deliberation and a focus on equipoise will inform what proportion of the practice of ethics
consultation is attentive to consensus or the necessity to come to an agreement and what
proportion of the process is attentive to moral deliberation shifts and utilizing uncertainty

as a condition and check to inconsistent actions.

79

SPARROW HOSPITAL ETHICS COMMITTEE
Ethics Consultation
(4' .1

MW . ___Bcc.crt_9.t..__ ._
Paragraph 3, last sentence:

“According to she had never continuously and actively participated In

a substance above recove-v program Wham

"z I'- .0. : :los;:1 |:|O; I :oeego;e s;..
I -ll utol (I.

The last part of the sentence (underlined) is Dr. 's' conclusion not

'8. Dr. apologizes for any confusion that might have occurred from
this statement. He has made this conclusion and stands by it. Or. does not
know if ’ has made the same conclusion.

8O

SPARROW ETHICS COMMITTEE CONSULTATION:

Case #2
, MD. was asked by . . MD. to arrange this consultation following a request
by Dr. . Alter conversations with an ICU nurse, social worker
I' g physician Dr. Dr , and Dr. ...- of the Ethics Comrmtt' eel

decidedmatthiscasedidnotrcquiretheumalfirflsubcommineeappmach,

Dr. ’s question essentially was “Are we obligated to ofl'er open heart surgery with valve
replacement to this patient?” In summary she is a 43-year-old woman with a long history of
alcohol and narcotic abuse with multiple hospital admissions for complications of abuse. Her last
admission was for the same reason as this one: infection (sepsis) following intravenous drug use.
Presentlysheisin'I'HElCUwithliver, kidneyandlungfailure Shehassepsisfi'omaninfected
hemtvalvethatissendinginfectiouscmbolithroughouthcrbody. Sheissedated andona
ventilatorsotheycannotdetermineherabilityto reason

TheproblcmshepresentstoDrs. and isthatwithoutreplacementofherinfected
heartvalveshehaslittlechaneeofrecovery. But opcnhcart surgerywithvalve replacement inher
casewouidbeveryhighriskandofl‘eronlyasrnallchanceofrecovery. Additionally, anewheart
valve would be prone .to infection in the future if she recovers and continues to abuse drugs.
According to Ms. she had never continuously and actively participated in a mbstance
abuserecoveryprogramsothereisnoreasonto believethatshecanmaketheradicalanddrastic
changes in a lifestyle needed to derive prolonged benefit from the surgery if it were suwessful.

IdiscussedthecasewithDr. and byphone;theyconcurredwithmy
recommendations. Our position is that the fact that open heart surgery with valve replacement is
essentially only hope for survival is nor suficient moral reason to ofi‘er it to her.
Ptndifiaauly,hmbemunaprocedmeisavaihbleandusefidwmedmesdoumtmmafly
require that it be used in all possibly applicable situations.

Regrettablyandtragically hasnotusedavailableassistanceforhermainproblem
whichisarbstanceabuse.Heartvalvereplacementwillnotaddresshcrsubstanceabuseand
indeedwouldinaeasehufiskoffirnnemfectionandcompficauonfiommeabuse.Put
difi‘acnfly,thenngaywmddbefirfilebynmhdpmgaddrushumfinpmblanandaauafly
inereasefirnueriskfi'omit

If mrvivesherunrcntfllnesainthefirmremakessignificammogressonher
addictionproblern,andcontimrestoncedheanvalvercplacememrherenughtbereasontoofi‘erh
toher.Butundertheeircumstancesastheyerrist,weseenomcralbasisforofi‘eringittohernow:
indeedhwmddbedrwmaandaflyconuaindicuedbecwsehinaaseshufimnedskof
infectionifherlifestyledoesnotchange.

81

the patient is a 43-YOGV‘OIU woman With 8 long hiStOfY O! BICOIIOI arIu flatworm cuuac nun
nultiple hospital admissions for complications of abuse. Her prIoI admISSIon was for the
reason as the present one: sepsis following intravenous drug use. At the time of the consult
aquest she was in ICU with liver. kidney and lung failure. An infected heart valve was
sending infectious emboli throughout her body. She was sedated and on a ventilator. so her
wishes could not be ascertained. l-ler surgeon requested the consult to determine if he was
pbligatad to offer open heart surgery with valve replacement at that time.

1. A portion of the discussion centered on a clarification of the medical issues.
If surgery were performed while the woman was septic there would be a very
high mortality rate. This would be reduced considerably if her sepsis was
cleared up first.

2. A second major issue waswith regard to the significance of her long history of
alcohol and drug abuse for decision making. From a medical perspective. if she
had a valve replacement and survived. and continued to abuse drugs. the new
valve would also become infected with possibly even more severe
consequences. However. surgery and valve replacement is her only hope for
survival. in weighing the risks and benefits of surgery should one see her past
failure to éhange her drug habit as an indication for her probable future failure
to do so. thus decreasing the probable benefit from the procedure. Or should
the issue of her future life style simply be ignored when weighing medical risks
and benefits?

3. From a moral perspective. is there an obligation to offer the patient the
treatment regardless of the risks and benefits? The consultant concluded that
there was no moral obligation to offer her this procedure. He judged the
surgery to be futile because it did not address her substance abuse, which was
her main problem. and would increase future risk from it. It was suggested that
perhaps it should have been explicitly said that the surgery might be morally
permissible even if not obligatory.

4. Another major issue was whether the substance abuse was being seen as an
illness. just a circumstance of her life. or a moral failing on the patient's part.
Discussion indicated that neither physicians nor the ethics committee should be
making moral judgments about patients or basing treatment decisions on those
judgments.

5 The question was also raised regarding whether the issue as it was raised. and
at the time it was raised. was a medical question rather than an ethical issue.

6. There was discussion about the appropriateness of omitting the family's wishes
regarding the surgery from the consult summary. Although this is not relevant
to the specific question asked by the referring physician. it would be relevant
to managing her care and implementing the decision. '

fissue that was raised relative to the third case but has application “if any consults W88
e role of the ethics consultant in bringing to the attention of a physician. problems that keep
gcurring in consults on his/her cases. The consensus was that it would be appropriate to
ak with physicians about these problems. but the concern was that if we were to do this
ysicians may be reluctant to request consults in the future. A QUOStlon W83 8'30 “5399
out whether the consultants have the credibility to do this. This discussion will be
antinued at a later date.

The meeting was adjourned at 8:30 PM

Respectfully submitted.

82

Case #2

Although this case does not fall clearly under the categories of either impaired
premature newborns or incompetent adults, it raises numerous questions about “deciding
for others.” This case was chosen because it contained a significant amount of written
material. In the absence of direct observation, the more extensive commentary which
includes notes on a case consultation review provides a fairer basis for a case analysis.

The request for this consultation was made by an attending physician who
summarized the question in the report as follows: “Are we obligated to offer open heart
surgery with valve replacement to this patient?” The patient had multiple admissions for
alcohol and narcotic abuse. Without replacement of her infected heart valve, “she has little
chance of recovery.” The questions raised by this case fall into three categories: 1) the
moral authority of ethics consultation; 2) process versus outcome & consensus; 3) the
absence of shifts in moral deliberation & equipoise; and 4) the question of allocation of

health care resources or economic issues related to this case.

IIIIHI'EEI'CI"
This case raises a number of interesting questions. Because the consultation report
is limited in scope, it is both appropriate to notice what is “ revealed and concealed” in the
report. Because I was unable to observe this case, I may be making some inappropriate
assumptions that require clarification. However, the essence and challenge of this case is
to balance the physician’s question of obligation with the benefits and burdens of
therapeutic treatment for the patient. The patient is “sedated and on a ventilator so they
cannot determine her ability to reason.” The report does not indicate if there is any reason
to address her reasoning capacities. Is there any indication that by decreasing her
sedatives, she could potentially participate in decision-making on her own behalf?
Secondly, under 6.) in the consultation review, there is the question of the appropriateness

of omitting the family’s wishes regarding the surgery from the consult summary. The

83

committee notes that this information was relevant to “managing the patient’s care and
implementing the decision.” Because the question of the patient’s competency is both
central to the question of surgery and perhaps even more pivotal to compliance in general, it
seems that the issue of “deciding for others” needs to be well formulated in the consultation
because the patient is sedated, not necessarily incompetent.

I do not mean to underestimate the fact that the patient is in ICU with liver, kidney,
and lung failure. Yet, there appears to be a question of whether there is a bias among the
health care practitioners regarding the major issue of substance abuse as illness versus a
“moral failing” on the patient’s part as determined by the consultant. The question at hand
in this report concerns itself less with the patient’s dilemma than with the obligation of the
physician. Under 5.) in the consultation review, “it was suggested that perhaps it should
have been explicitly said that the surgery might be morally permissible even if not
obligatory.” “The consultant judged the surgery to be futile because it did not address her
substance abuse, which was her main problem, and would increase future risk from it.”
Although the question at hand is whether the patient has any “prolonged benefit from the
surgery if it were successful,” another issue related to this case is that the patient had
“multiple hospital admissions for complications of abuse.”

In describing the surgery as “futile,” the consultant is making a judgment based on
the long history of substance abuse. “However, surgery and valve replacement is her only
hope for survival.” From a medical perspective, it is probably safe to assume that the care
providers might consider the patient “noncompliant.” What is “morally permissible” has all
but taken a “back seat” in this case to what is “morally obligatory.” “The implicit moral
stance here reproaches patients for their deviance and may devalue their claims to
competency.”135 The question of previous compliance with abuse recovery programs is an
orientation of health behavior from the physician’s point of view, rather than from that of
the patient’s. The moral authority of the ethics consultation in this case stipulates that the

physician or the consultant holds the most valid explanation of illness. Without exploring

84

the meaning of what illness holds for the patient, what appears as non-compliance within
the health care system may be logical within the constraints of day-to—day life. “In its
broadest cultural implications, the practice of bioethics through consultation may, despite
its professed intention to open decision-making to nonclinical considerations, enhance the
already strong tendencies for medicine to become a privileged domain.”136 The particular
way in which this patient’s moral decline and illness is construed further perpetuates the
moral authority of consensus.

W

Although a nurse, social worker, and another physician were involved in
conversations regarding this case, these conversations and perspectives are not included in
the case report. This was not a formal subcommittee as such, yet it appears that there was
“informal consensus” among the health care practitioners regarding this case. Again,
without having participated, it is difficult to be more precise, but the question of whether
the focus on hasty consensus interrupted moral deliberation remains a valid question in this
case. Was consensus a goal, rather than a condition in this case?

One aspect of consensus that was reached was that if the patient received a heart
valve replacement and if she continued her pattern of substance abuse, then the heart valve
would become infected again. The other medical condition in which it appears there was
consensus was that performing the surgery with the current infection correlated to a high
mortality rate. In the case review, it was noted 1.) that this high rate of mortality would be
reduced if the infection was cleared up first. The other apparent form of consensus that
was reached was that “her main problem is substance abuse ...[and that] surgery would
[not] address her main problem.” However, on page 2 under Clarification of the Report, it
was noted that under paragraph 3 that the consultant, and not the social worker, believed
that the patient could not make a “lifestyle change.” It is not clear if the social worker
disputed this statement or how the informal gathering of health care practitioners viewed the

patient’s intravenous drug use. It is clear that there was consensus among two other

85

consultation members when the consultant wrote, “I discussed the case with Dr. and
another team consultant by phone; they concurred with my recommendations.”Again,
without being present for the conversations, it is difficult to say anything conclusive. But a
comment about process versus outcome and the quick consensus that was reached in this
case would seem to support some of the points made in 1) through 6) of the case
consultation review by the larger committee.

The discussion from the case review explicitly questions whether physicians or
ethics committee members “should be making moral judgments about patients or basing
treatment decision on those judgments” and indicates that this should not be the case. From
notes 1) through 6) in the case review, the committee engaged in a process by separating
morally permissible from morally obligatory and questioned the role of making moral
judgments in cases of substance abuse. This discussion is substantially different than the
outcome-bound-approach in the initial consult in which the “surgery is regarded as futile”
and in which “the physician is not obligated to offer the surgery.” This raises the question
of “what prevented a procedural approach from occurring in the initial consultation?”

One might argue that a process-oriented approach had occurred in the initial
consultation. The consultation team needs a practical resolution and are compelled to seek
consensus. Because this particular consultation team works alongside each other day-in
and day-out, one might speculate that they might place a high value on cooperation.
Subsequently, they might struggle harder to find common ground rather than place an
emphasis on moral disagreement. Such an outcome might be regarded as “compromise and
integrity in ethics(Benjarnin,l990).” Perhaps the individuals within the team were able to
compromise their ethical convictions without sacrificing their integrity. If this were the
case, we would view the resulting process and outcome as legitimate. The process
involved the necessary value of searching for agreement that shaped the individuals’
perspectives in order to reach a compromise for purposes of a practical resolution.

However, it is just as possible that there is also a danger that the ethics consultant team had

86

developed an immunity to self-critical analysis that should be part of the protocol of a
difficult case. By virtue of being an extension of the hospital as an institution with its own
ethos that does not always guarantee ethical conduct, the concept of moral deliberation

shifts and equipoise provides a check and a balance to the consultation team.

 

' ‘: Without the ethical guideline of
equipoise, the practice of ethics consultation goes unchecked and quickly becomes focused
on consensus as the outcome. If equipoise had been a condition of this consultation, the
possibility would have existed for taking a second look at why the consultant thought that
“there is no reason to believe that she can make the radical and drastic change in a lifestyle
needed to derive prolonged benefit from the surgery if it were successful.” Not only is the
consultant confident that a shift in moral deliberation is unlikely to occur on behalf of the
patient, the consultant himself does not appear attentive to the possibility of shifting his
own moral deliberation. The overriding assumption seems to be that shifts in moral
deliberation are incompatible with resolving this particular conflict. The implication of this
view is that the problem of moral conflict does not necessarily involve competing claims
nor does it recognize that the pervasiveness of moral disagreement is a condition with
which we must learn to live, rather than a mere obstacle to be overcome.

In the initial consultation there is minimal detail of individuals justifying their
decisions to one another. What is revealed through the case report is not deliberation or
even bargaining, but perhaps a demonstration of an attempt to establish the truth of a
comprehensive moral view through an impartialist approach that appeals to altruism in the
sense that the subcommittee acts on behalf of an institution for the general good. The
reason that I suggest that bargaining may have been a condition in this case and used as a
substitute for moral deliberation is that it is not clear that the well-being of the patient is
maximized. The physician and consultant in this case seem to regard the patient more as an
adversary and a non-compliant patient, than as participants “negotiating a moral order” with

one another. If that is the case, then the consultants are utilizing their group advantage at the

87

expense of the patient. Was there a thicker conception of moral obligation or moral
permissibility that the consultants owed to the patient, in this case, other than whether the
physician was obligated to offer surgery? In suppressing their partial perspectives, perhaps
the various individuals were trying to justify a greater good. But with respect to
utilitarianism and impartiality in this case, moral deliberation seems to be short-circuited
and an attempt is made to simply resolve the case, rather than making adjustments to
cultivate uncertainty or living with the persistence of moral conflict as it relates to
substance abuse. What appears to be missing in this case is that justifiable reasons are not
available nor given to all parties, first and foremost. “In the face of disagreement,
impartiality tells us to choose the morally correct view and demonstrate its correctness to
our fellow citizens, who, if they are rational, should accept it.”137 In the case review, a
focus on moral deliberation begins to become evident. Therefore, the subsequent steps of
shifts in moral deliberation and equipoise are conspicuously absent. We do not know what
kind of discussion took place, what arguments were presented by individuals other than the
consultant, or how each responded to the claims of the others. At the very least, moral
deliberation in ethics consultation seeks a morally-justified consensus, not consensus for its
own sake.

WW5; Health care practitioners are loathe to discuss the
economics of therapeutic treatment decisions within the practice of ethics consultation
because cost savings is typically not an explicit goal of ethics consultation. However, one
might ask whether or not the issue of payment for heart surgery with valve replacement is
pivotal to this case. We do not know whether payment for this surgical procedure would
come out of Medicaid, the hospital’s charity budget, or whether the patient is employed and
her health insurance is refusing reimbursement for the procedure. We do not know if the
source of this conflict is the scarcity of health care resources or what basis it has, if any, in
weighing the factors that help decide this case. The purpose of identifying this as an

incomplete issue is not to merely focus on personal preferences or group interests, but to

88

acknowledge that one of the aspects of moral deliberation in health care is to explicitly
acknowledge the role of allocating health care resources in medical decision-making. If by
contrast we are hesitant to explicitly include distributing health care in our framework for
moral deliberation within the practice of ethics consultation, we are neglecting to address
the reality of the allocation of health care resources as a component of treatment decisions.
Ethics consultants, as agents of ethical analysis, are expected to “foster conversations
among the decision-making parties in ways that help them to explore the salient moral

features of their situation.”138

 

Ff—“““.*~—“—r.'
A

89

Case #3

Life and Death
Decision Making

Baruch A. Brody, Ph. D.

New York Oxford
(DXJWNRElLflflflflflRSflFYlflRESS
1988

 

90

ZASES INVOLVING CHILDREN 2' l

Baby F arose, heart transplants in newborns were just beginning. That is why the
Norwood shunt procedure was the surgery being considered. Since that time, a track
record for transplants has come into existence, and it seems to offer a significant
chance for such children. If our analysis until now has been conect, the conclusion
we need to draw is that parental refusal of surgery should be overridden if a heart
becomes available for transplanting a future Baby F.”

We need to remember an important point made earlier in connection with adult
Jehovah’s Witnesses. There are two ways in which a team can move forward with
heart-transplant surgery. One would be to talk the parents into agreeing. The other
would be to take temporary custody of the child, by virtue of a court order, and then
proceed with the surgery. There is more to be said for the latter strategy. To begin
with, for the parents to agree with the surgery because of the pressure of the current
situation would be for them to act in a way that is not consonant with their princi-
ples, showing a lack of integrity. Moreover. if they do agree, then we are laying the
foundation for tremendous guilt feelings later on when they have to confront the
question of whether or not they have sinned. Wouldn’t it be better for both of these
reasons simply to take custody of the child?

In conclusion, it was morally appropriate not to press forward with the surgery in
the case of Baby F. ”In the future, however, it seems that getting court orders to
take custody for children like Baby P so that heart transplants can be performed
(providing that an organ is available) would seem to be the morally appropriate
action. ' '

CASE NO 33. “It’s too much of a burden on him and us":
The nee; to clarify what the parents are saying

Facrs Baby G was born with spina bifida cystica. Because of the failure of the
neural tube to close during the first trimester of pregnancy. this baby developed an
opening in the upper lumbar region of the back that left exposed both membrane
tissue and nerve tissue (a meningomyelocele). In addition, he had a moderate
degree of hydrocephalus. Finally, there were clear indications of significant wealt-
ness of the legs and of neurogenic bladder dysfunction. The physicians have
explained to the parents the nature of all of these deformities. They have also
explained the complicated medical and surgical management currently employed
for such cases. This includes closing the opening to prevent infection, shunting the
child to lessen the accumulation of fluid in the brain, and then, at a later stage,
performing extensive surgery to improve (as much as possible) motor and urinary
functioning. They have admitted to the parents that it is difficult to say how suc-
cessful this complicated set of procedures would be but that their experience indi-
cates a reasonably good chance that this child will have close to normal mental
functioning and only some moderate physical dysfunctioning. As the parents began
to realize the complexity of the situation, they have begun to have serious doubts
about the physicians’ recommendations. To some degree, those doubts are based on
their concern about whether the physicians are being excessively optimistic con-
cerning the child’s resulting quality of life. There are, however, additional factors
present in their thinking. The parents have a moderate income, and they already

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212 UFE-AND-DEATH Decrsron wutmo

have three other children. They have expressed tremendous concern about the
financial implications for long-term care for this child; they are worried about how
the tremendous amount of time they would have to give to this child would affect
their ability to care for their other children. Having thought about it for a few days,
the parents have requested that the child be allowed to die, presumably from the
infections that will set in if the open lesion is not closed.

QUESTIONS The first question here centers around quality-of-life considerations.
Some members of the team object to the very introduction of quality-of-life consid-
erations in this case. They believe that aggressive surgical management means that
the child will survive, and they believe that it is inappropriate for either staff or
parents to make decisions against aggressive management on quality-of-life consid-
erations. Others accept the legitimacy of quality-of-life considerations in at least
some cases but believe that they cannot appropriately be invoked in this case. Their
argument is that the location of the lesion and the nature of the other problems puts
this case on the borderline between those in which the resulting quality of life is
likely to be clearly acceptable and those in which the resulting quality of life is
clearly unacceptable. In these borderline cases, they argue, it is inappropriate for
either physicians or family to decide against surgery on quality-of-life considera-
tions. Other members of the team don’t see this issue either way. They feel that
quality-of-life judgments may be taken into’ account and that there is sufficient
doubt about the resulting quality of life to allow the medical team to go along with
parental wishes to let this child die.

There is also the question of the relevance of the financial and psychosocial
implications of the continued existence of this child for the parents and for their
other children. Some view these implications as additional reasons why the parental
wishes should be respected. Why, they argue, should we impose tremendous addi-
tional burdens on this family when the outcome is so unclear? Others see it very
differently. They feel that the parents are not attending to what is in the best
interests of this child; their concern is primarily with themselves and with their other
children. In the minds of these members of the team, this fact makes the parents
inappropriate decision makers for Baby 6. Members of the medical team, who are
concerned with the best interest of this child, should make the decision for surgery.

In a further complication, some members of the team have pointed out that there
are good parents willing to adopt such children. Would it not be more appropriate,
they argue, to arrange for such an adoption, with the consent of the natural parents,
rather than allow this child to die? This would avoid the family’s suffering the losses
about which they are concerned. Others don’t see the question of adoption a
relevant. Theirview isthatthedecisionhastobemadebythephysicians and/orthe
parents of the child, not by outside potential adoptees.

Still one final set of issues complicates this case. Some members of the team
think that it is unacceptable to leave the lesion open (exposing the child to infection)
and to not treat the infection. They view this as equivalent to killing the child. They
feel that even if we respect the parental wishes, we must at least close the lesion and
treat the infections. Others think that if we decide to simply let this child die, we

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CASES INVOLVING CHILDREN 213

should leave the infections alone so that he will die in a reasonably short period of
time.

THEORETICAL ANALYSIS The case of Baby G and those of other babies like him
have attracted much attention among neonatologists. bioethicists, and legal scholars
in recent years. '9 Spina bifida children have become classic cases around which the
discussion of the legitimacy of withdrawing treatment for quality-of-life reasons has
centered. Scholars have found this type of case to be one of the most difficult to
resolve. Therefore. we need to approach this case with particular care.

The first thing to note is that there is a fundamental ambiguity about the reasoning
of the parents. Are they refusing surgery primarily because their judgment is that it
would best for the child if he were to die, and is their talk about the burden on the
family just an extra consideration, or is the burden on the family an essential part of
their decision, and would they make a different decision if it weren‘t for that
problem? Why is it important to resolve this ambiguity? It is not because there
would be something wrong with a parental decision for which the burden on the
family was one of the essential reasons. We have already argued that it is legitimate
for a family to take into account the implications of its decisions for all members of
the family, not just for the child in question. It is only when the parents place too
much emphasis on the implications for others that their decision comes to have less
moral force. The reason why it is important to clarify the parental reasoning is very
different. It relates to the possibility of the parents agreeing to the surgery and then
giving up their child for adoption, a real option in these days of a very limited
supply of children available for adoption. If an essential reason for the parents’
decision is the great burden care for this child would impose on their family, then it
would seem that they should agree to the adoption option. We would then have a
case with a very different moral structure, since we would no longer have to deal
with a parental refusal of care. If, however, their judgment about the quality of the
child’s life is a sufficient reason for their refusing permission for surgery, and if the
talk about the burden on the family is simply an extra argument for their decision.
then they should refuse the option of giving the child up for adeption postsurgery.
The case would then have parental refusal as an essential feature, and any moral
analysis would need to take this into account. So it is really very important to settle
this question.

For the rest of this discussion, we will assume that the parents of Baby G oppose
the adoption Option and refuse surgery for the child, insisting that in the end their
judgment is based on the belief that the child would be better off if he were not
treated and were allowed to die. This is, of course, the harder case.

What are the arguments against surgery? The first and the most important is, of
course, the fact that the parents, who are the appropriate surrogate decision makers
for Baby C, have refused permission, and they have a right to have that refusal
respected. This right is of considerable significance here. After all, this is a refusal
made by competent decision makers who have a good understanding of the uncer-
tainties and ambiguities about the outcome if Baby G is aggressively managed and
who understand the strong probability that he will die if it is not. Moreover, having

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214 UFE-AND—DEATH DECISION MAKING

arrived at that decision, they have continued to hold it very firmly over a period of
days as the discussions between them and the caregivers have continued. While not
rooted in some central theological belief of theirs, such as in the previous case of
Baby F’s parents, their decision is rooted in a general philosophy about what
constitutes a life worth living. All in all, then. it is a refusal of treatment which
generates a very significant argument against treating the child.

There are substantial consequences for the family that argue against surgical
management of this case. To begin with, going ahead with the surgery against the
wishes of the family after this whole process of discussion would certainly cause
them much distress and frustration; they would feel deprived of the right to make
decisions for their child. Moreover, after surgery, there are two options. One is that
the child would eventually go home with these parents, and this would result in a
great burden on them. Alternatively, they might at that time agree to give up the
child for adoption, and they would suffer the extra anguish of knowing that deci-
sions made against their wishes resulted in their being put into a situation where
they felt compelled to give up their child. Neither outcome is particularly satisfacto-
ry from the perspective of the family. So there are strong considerations from the
appeal to the consequences for the family which argue against going ahead with the
surgery.

What are the arguments for the surgery? One would be an appeal to the conse-
quences for the child. Surgery gives this child his best chance for surviving with a
reasonable quality of life. However, this satisfactory outcome cannot be guaran-
teed. The child may die anyway as a result of the complications of the disease
and/or of the treatment. Alternatively, the child may survive with a significant level
of mental and/or physical disability. Any appeal to the good consequences for the
child cannot be a very strong moral argument, because the probability of a good
outcome is far from certain.

A similar point needs to be made about the argument from respect for persons.
Respect for persons comes into play here because we might argue that surgery offers
the best chance of continued existence of the child as a person capable of per-
forming those activities whose perforrnance we value so much. All of this is true,
but the argument cannot be taken too far since the probability of that favorable
outcome is far from certain.

It is important to note, as one immediate corollary, that the situation would be
very different if the lesion were lower or if there were no accompanying hydro-
cephalus. In such cases, where a prognosis for survival with a reasonably good level
of functioning would be much better, the arguments for going ahead with the
surgery—the favorable consequences for the child and the demands of respect for
persons—would be much more significant. This means that the development of
well-defined protocols for judging likelihood of success is a valuable help for sound
moral decision making in this area.

The arguments for respecting the wishes of the parents, given that those wishes
have now been clarified, appear to take precedence over the arguments for going
ahead with surgery against their wishes. But it is important to note that the analysis
might be quite different20 if the medical facts of the case were somewhat different.

Many health-care providers might be very uncomfortable with the decision the

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CASES INVOLVING CHILDREN 215

parents have made. Many would feel that it would be better if surgery were per-
formed. This feeling would be based on a different assessment of the value of Baby
G's life even with quite substantial physical and mental disabilities. It would seem
perfectly appropriate for such people to withdraw from the case of Baby 0. if
continuing to care for the baby in a mere supportive fashion without aggressive
surgical management sufficiently offends their sense of values and their integrity.
The parents need to understand that others may feel just as deeply about this case
and that they are not entitled to impose their values on those others by insisting on
mere supportive care for the child until he dies. The parents need to seek out health-
care providers who feel capable of participating in the choices made by the parents
without that participation offending their sense of integrity.

What should be done for the child in the meantime? The parents. if they really
mean what they have said. should probably also refuse treatment for Baby G's
infections.2| What would be the point. given their view that the child is better off
dead. for treating infections with sac closure and with antibiotics? That would only
prolong the child's life and might even result in the child surviving without getting
all of the surgery he really needs for survival with good functioning. It seems that
consistency calls on the parents to make the decision to simply have the child fed
and kept warm and comfortable until he dies. probably from infection. Doing so
would not be. as some members of the team have said. killing the child. The cause
of the death will be an infection resulting from the underlying medical problems of
this child born with a neural tube defect. Not treating infections with antibiotics is
simply a way of allowing the child to die from the complications of his underlying
disease.

CASE NO 34. “Why do anything if the baby is going to die an.\°wa_\'?":
Facing the ends-means problem

FAcrs At birth. Baby H had severe abnormalities. including low-set ears, an
unusually small jaw, rocker-bottom feet. and a clenched hand with tapering fingers
and a malformed thumb. In addition, Baby H had difficulty breathing and had clear
signs of congenital heart problems. It did not take long to diagnose Baby H as
having trisomy 18. The staff met at that point with the parents and explained to them
the full extent of Baby H’s problems. They told the parents that the chance of the
child’s surviving for even one year was less than 10%, that even those children who
survived that first year had very little chance of surviving childhood, and that the
surviving children had extremely severe mental and physical defects. The staff
recommended that little be done to treat the medical problems except to feed the
baby and keep him comfortable until he died. The parents. a young couple with no
other children, were devastated by what had occurred. At the beginning, they
simply accepted the staff‘ 5 recommendations. After about a week, there was a
change in their thinking. When they received genetic counseling and came to
understand that it was very likely that they could have normal children, their
attention turned to the question of having another child. They began to wonder why
anything at all was being done for this child. Why not simply stop feeding the child
and let him die, they asked? As time has progressed. their insistence has become

95

Case #3

This case from the literature is one of the most difficult cases in ethics consultation.
For this reason as the author describes, the argument for moral deliberation shifts and
equipoise are appropriately suited and put to the test. Again, this case was chosen both for
its difficulty and for its extensive analysis which is comprised of 1) facts; 2) questions; and
3) theoretical analysis.

Facts: Baby G was born with spina bifida cystica. This condition is characterized by the
absence of vertebral arches with a protrusion of the brain or spinal cord through either the
spinal column or through the skull.”9 The infant also has moderate hydrocephalus, an
accumulation of fluids in the brain. The parents are described as perceiving the physicians’
recommendations as “excessively optimistic concerning the child’s resulting quality of
life.” After a few days , the parents “requested that the child be allowed to die.”
Questions: The aspects of moral deliberation in this section focus on 1) the moral
deliberations of the team and 2) whose discretion should prevail in refusing treatment for
the imperiled newbom.(Because it is generally accepted that the parents are the appropriate
decision-makers in this case, we will examine the questions or deliberations rather than
discretion. Although there is a reference to whether the “medical team [would] go along
with parental wishes to let this child die,” we will forego the issue of who decides. In most
court case, parents or other surrogates have been allowed to direct the removal of life-
sustaining treatment and to consider quality-of-life issues. 140)

Members of the team have varied responses to the “quality of life” issue. Some take
issue with even introducing quality of life issues because surgery is being offered and is
available. Others accept the consideration of quality of life but discount it in this case
because it is a “borderline” case. The description of the team’s reaction provides us with
some semblance of deliberation. Members seem to align themselves into various camps.
What seems to be missing is a consideration of responses to the merits of each side’s

claims. On one side are the parents who believe that the child would be better off if he were

96

allowed to die; on the other side are team members who believe that quality-of-life issues
should not be taken into account and others who believe some quality of life should be
considered. From the parents’ point of view their way of life is threatened as is the future
life of the child. From the team members, the case is borderline and it is therefore
inappropriate to decide against “surgery or quality-of-life considerations.” There is no
morally impartial or neutral position in this case. There is only uncertainty.

There is no indication that any of the team “shifts” his or her view regarding this
complicated case. Perhaps this is an acceptable and anticipated response from team
members whose jobs day-in and day-out are devoted to medical and surgical management.
We might further speculate that if health care practitioners shifted in their moral
deliberations then they would be regarded as neglecting their professional duties and
compromising their integrity. Shifts in moral deliberation do not imply moral skepticism,
but rather manifest themselves in fundamental moral conflicts where “incompatible values
and incomplete understanding are as endemic to human politics as scarcity and limited
generosity; then the problem of moral disagreement is a condition with which we must
learn to live.”141

Do the team members listen to the arguments of each other, the parents, or of those
who held other positions? Is there a process of moral deliberation or any attempt to
persuade each other of the implications of each position? The inherent tension of a critically
ill newborn when the possibility exists that pain and suffering is the result of treatment
versus a decision to dis- continue treatment do not have simple answers such as treating
infants at all times or always respecting parental decisions without question. The
complexity of allowing an infant to die and the best interests standard of the child involve
medical, psychological, and value-laden facts in decision making in neonatal ethics. If
health care practitioners in the neonatal unit are instructed to present their opinions in an
unambiguous way because it might be a sign of weakened credibility, either in support of

surgery or support in refusal of treatment, might we expect or anticipate that parents would

97

take their cues and subsequently present an unambiguous decision? Managing parents’
uncertainty or utilizing the condition of equipoise as a balance to reckon with difficult cases
can assist health care practitioners. For the parents’ part, whether or not to bring a child
into the world who might be destined to have a difficult life versus a moral ground whereby
the future child herself might rate her quality of life high would seem to suggest a parental
responsibility that involved shifts in moral deliberation.

Because this narrative does not differentiate ethics consultants from physicians or
health care practitioners, it is a significant distinction that requires mentioning. We might
anticipate and expect that the ethics consultant who works on a contractual basis for the
hospital or who is sub—contracted out to the ethics committee is less bound by the value of
cooperation and reliance on consensus because he works less on a day-to—day basis with
other health care practitioners. This statement is not meant to release the health care '
practitioner as ethics consultant or ethics team member from the ethical guideline of shifts in
moral deliberation and equipoise, but to acknowledge the professional and systemic
complexities that might prevent health care practitioners from engaging in shifts in moral
deliberation.

Theoretical Analysis: One of the facts in this case is that the parents over the course of
“a few days” decided to allow the infant to die. Shifts in moral deliberation and equipoise
are unlikely to occur in such a short time as a period of a few days. Realistically speaking,
shifts will require a minimum of two weeks, in neonatal ethics, for those who are deciding
for others when the decision regarding an impaired newborn at birth is sudden,
unexpected, or has not been previously considered over the course of a pregnancy.

The analysis notes that there is a “fundamental ambiguity about the reasoning of the
parents which must be resolved.” The question posed here is the consideration of burdens
to their other children as having “less moral force” than a “quality-of-life” decision for
refusing surgery and a subsequent decision to refuse “adoption postsurgery.” The case

notes here seem to request and require a definitive resolution regarding different moral

98

reasoning if adoption should be an option. Although the case analysis continues on the
premise of refusal of treatment and against surgery, we will take a brief look at the
implications of the statement “fundamental ambiguity about the reasoning of the parents.”

I will argue that the “fundamental ambiguity” regarding the parent’s reasoning is the
fundamental pervasiveness of moral conflict. Unlike the author’s description of ambiguity,
it is more likely that what the author observed was the inherent uncertainty regarding the
outcome of Baby G. I would speculate that we should feel more concerned and worried

about how the parents are dealing with the moral responsibility of this decision if they

 

weren’t expressing some “ambiguity” or uncertainty. In the best interests standard, the
parents must weigh the benefits versus the burdens in deciding whether to proceed with
surgery. One consequence of the responsibility of the parents is that making such a
decision for a loved one is demanding. For this reason, the lack of a “shared ethical
framework” for guidance that might be provided by society or a network of friends and
colleagues leaves the family in a vacuum that might cause their “ambiguity” to be
anticipated and acceptable.

The uncertainty of outcome for this infant is central to the impairment that informs
moral deliberation in this case. No predictive tool exists for decision-making for impaired l
newborns. Complications from spina bifida are usually treated surgically. Because the
nerves are damaged the child is often paralyzed and does not have bladder or bowel
control. When hydrocephaly accompanies spina bifida, the surgical operations often result
in physical and mental damage from efforts to get the shunt to work right. However, the
mere presence of spina bifida does not in itself indicate how disabled the child will be. The
severity of the impairment is difficult to predict. The more significant consequence is that if
hydrocephalus was not present, the outcome would be more favorable for this child.
Hence, the commitment to support an impaired newborn presents overwhelming and long-
terrn responsibilities to families who must make financial provisions, provisions for

medical care, special education, and social assistance while maintaining an existing parental

99

relationships with the other children in the family. The ambiguity of the outcome might
cause any parent to only partially articulate his preference or uncertainty.

The case notes state that the parents as competent decision-makers have remained
firm in their decision “over a period of days.” Their decision against surgery is based on
what constitutes a life worth living. However, the dictates of firmness in a decision over a
few days seem to constitute an ineffective and arbitrary measurement against surgery in this
case. Although consistency in decision-making is often associated with confidence and
surety, the parenting and emotional crisis created by the arrival of an impaired newborn
might cause one to experience anger, despair, hopelessness, motherly instincts, love,
irrationality, loyalty, and betrayal as moral inquiries and personal prejudices about
questions of abnormality abound. The parents in this case are tested by a situation in which
there is no right answer because of shifting loyalties. The parents’ decision may be clouded
by their grief or guilt and the responsibility of having to make an irrevocable decision.
Therefore, the criteria of “firmness” in decision-making could as easily and arbitrarily be

regarded as too narrowly constructed.

Conclusion

Consensus from a sociological perspective is a requirement for medical decision-
making. What I have tried to show is how reaching agreement or consensus in ethics cases
becomes a goal rather than a condition. Moral deliberation in the practice of ethics
consultation remains secondary to consensus decision-making as a goal. Consensus on the
case should emerge from the process as a “high-quality assessment of a problematic
situation.(Moreno 1994)” However, I have demonstrated in the accompanying cases that
consensus remains a goal rather than a condition of ethics consultation by providing
empirical evidence to Moreno’s theory that consensus must remain a condition because of
its susceptibility to political and sociological processes. If consensus interrupts reflective
individualized moral deliberation, then the resolution or the moral authority of the decision
that was reached is called into question because in the context of the pervasiveness of moral
disagreement, moral deliberation shifts did not occur. In examining the case consultation
reviews from a hospital ethics committee, I have suggested that the condition of equipoise
can enhance the practice of ethics consultation through moral deliberation shifts. In trying
to resolve moral disagreement by bracketing competing values, we side-step the
opportunity of shifts in moral deliberation and recognize the pervasiveness of moral
disagreement, rather than attempting to set the conflict off to the side with the confidence
that we have “resolved” the issue. Consensus is susceptible to losing its weight of moral
authority in decision-making by providing inadequate moral guidance if its participants
neglect to address the condition of equipoise in the bioethical dilemma.

By proposing the concept of equipoise in the practice of ethics consultation, I have
responded to significant evidence that certainty in moral deliberation is a flawed notion that
does not seriously take into account the pervasiveness of moral disagreement. The moral
tension that exists must be highlighted by a state of genuine uncertainty in addition to the
need of resolution. Although consensus has been utilized as the preferred standard of

resolving uncertainty in the community, by imposing the condition of equipoise I

100

101

challenged the idea of confidence as a condition of an evidentiary warranted measure in
moral deliberation in decision-making in ethics consultation.

Responsibility for accountability is represented by the choice of questions and
methods in inquiry utilized by ethics consultants and health care practitioners. “Meeting the
demands of responsible inquiry may require participants to shuffle and reconfigure the
tasks involved in dramatic ways, such that the ‘subject’ and ‘object’ no longer apply
particularly well.”142 This statement and establishing the condition of moral deliberation
shifts and equipoise is reminiscent of two ideas proposed by John Stuart Mill. The first is
that Mill required that speakers address the challenges of those who present themselves.
“He argues that one ought to seek out views that are not being represented, and to make the
arguments oneself, if one can find no representatives of them.(Mill 1978,35-6).”143 Mill’s
second idea is “we are often correct in what we affirm and wrong in what we deny.”144

I want to emphasize that there are three limited scopes in this discussion. I have
tried to address how and why the condition of equipoise as an ethical guideline will result
in an inquiry to the practice of ethics consultation that reforrnulates the concept of equipoise
as cultivating uncertainty as one that is marked by responsibility. One important concern
has been the explicit reference to the necessity of moral deliberation shifts as a check
against hasty consensus. I have not addressed the next level of inquiry which would be to
evaluate moral deliberation shifts as satisfying a requirement of equipoise and whether the
condition of equipoise as an ethical guideline of uncertainty will result in a higher quality
decision. What I have sketched out is an examination of expanding an ethical guideline of
equipoise as a valid role in bringing to bear accountability in ethics consultation. The
second concern is the limitation of using case consultation reports as grounds for evaluating
ethics consultation. Further studies might permit tape-recorded transcripts, interviews with
both health care practitioners and families and patients, and the use of surveys to examine
shifts in moral deliberation and equipoise. The third limitation is that shifts in moral

deliberation at the level of individualized reflection and deliberation especially on the part of

102

parents deciding in cases involving imperiled and impaired newborns may require a
minimum of two weeks. The additional time involved undoubtedly calls into question the
allocation of health care resources through the daily cost in the neonatal intensive care unit
and whether or not these are health care resources that would be better off spent elsewhere.
If such financial concerns impinge on the extended time needed for moral deliberation
shifts, we would do well to openly acknowledge this conflict and address it explicitly,
rather than implicitly.

The understandable realization that an extended period of uncertainty is disturbing
for families, parents, and health care practitioners to reckon with often compels those who
are deciding for others to make decisions sooner than later and to imbue that decision with
confidence. Nonetheless, the significance of equipoise places the emphasis of informing
the participants involved in the moral disagreement and compels health care practitioners to
disclose their process of moral deliberation, and if possible, to model the pervasiveness of
moral disagreement and expression of uncertainty as a concept to be affirmed, rather than
denied, for patients’ families or surrogate decision makers. Habermas asserts that
consensus must be approached in a circuitous way. His description encompasses several
rounds of argument in which “no group member changed his or her mind about any other
but in which positions on the issue shifted in the light of arguments made in the previous
round.”145 Habermas explicitly refers to the necessity of shifts in moral deliberation that
have been absent from the following cases. Moral deliberation shifts and equipoise as a
check and balance against hasty consensus can strengthen the practice of ethics

consultation.

Appendix I

One shortcoming of this thesis is that I was unable to observe ethics cases through
the ethics committee at the hospital where I have held an internship. Although both the
Ethics Committee and the Institutional Review Board at the hospital gave their consent to
my proposed research, apparently there were no ethics consultation requests during a
designated three-month period that would have permitted me to utilize the research within
the time constraints of this thesis. The speculative reasons for this lull in ethics
consultation requests might reflect an earlier version of this thesis which was read by
various members of the ethics committee. In that earlier version, my thesis focused on the
question of what proportion of the requests for ethics consultations actually involved
“ethical dilemmas” and what proportion were representative of communication problems in
the physician-patient relationship that were masking as ethical dilemmas.

IfI had been able to observe three ethics cases, the accompanying questionnaire
would have served as evidence in measuring shifts in the practice of ethics consultation.
The proposed ethics consultation form combines standardized questions and new categories
of inquiry fashioned after the literature review on moral deliberation, decision-making,
consensus, and equipoise. With the aid of response from health care practitioners involved
in ethics consultations, I would have provided evidence to either support or reject the
theory of reaching equipoise. By observing cases, I would have had the benefit of
examining the process of ethics consultation and not had to solely rely on written case
reports.

The ethics consultation form contains the standard references and categories that are
part of most ethics consultation forms such as the goals of therapeutic treatment, patient
preferences, assessing patient's understanding of circumstances and decision-making
capacity, quality of life issues, record of living will, advance directive or durable power of

attorney, family situation, who requested the consultation, and what follow-up is

103

104

necessary.(see accompanying forms) I had intended to ask each member of the
consultation team to fill out the accompanying questionnaire.

Finally, if the case was presented for review at the Ethics Committee, I would have
noted the follow-up that the case had received. The empirical studies that have been done
on ethics consultation have focused on physicians’ satisfaction and the perceived function
of the ethics consultant. The literature in measuring the effectiveness or outcomes in ethics
consultation lacks studies that measure patient and family response as to whether or not an
ethics consultation was effective. However, the research on measuring patient satisfaction
was beyond the scope of this thesis.

This in-depth study of observing and compiling the data from this questionnaire
was to have focused particularly on the question of whether or not there are shifts in moral
deliberation in the process of achieving equipoise in ethics consultation as an aspect of
health care decision-making. The need to evaluate process in ethics consultation is part of

an assessment in health care delivery whose time is right for exploration.

105

Ethics Consultation Form146

Consult requested by:

Reason for consultation:

Persons involved in consultation:

 

Medical Indications:
l .
2.
3.
Patient’s Values & Preferences:
1. Living Will
2. Other Advance Directive
3. Durable Power of Attomey/Guardian:
4. Family’s Values:
Quality of Life Issues:
1. Who makes this decision?
2. What values guide the decision?
Contextual Issues:
1. Religious
2. Socioeconomic
3. Legal

4. Psychological147

 

Moral Deliberation & Decision-Making:

1)
2)

3)

4)
5)

6)

7)

106

Was the patient’s decisional capacity an issue?

If the patient was not decisionally capable, did the patient have an advance
directive? What type? What was the content?

Was it necessary to determine who the patient’s appropriate surrogate was? Was
this done? What was the process for doing so? What was the resolution?”8

Is specific moral advice to a particular outcome articulated by consultants?

Is the family or surrogate feeling denial, guilt, or grief and/or an overwhelming
feeling of responsibility for making an irrevocable decision?

Are shifts in moral deliberation present either for ethics consultant, health
practitioner, family member or surrogate?

Are reasons or justifications carefully expressed?

Consensus & Equipoise:

1)

2)
3)
4)

5)
6)
7)
8)

9)

Does ethics consultant note not only what was being said, but also what was not
said?

Is confrontation inquiring and respectful?

Is family or surrogate given an opportunity to be heard?

Is family or surrogate given the tools necessary to participate effectively in
consultation? (Be specific here)

What medical or social facts appeared to be unclear at this time?

What were the points of agreement and disagreement?

If consensus was ultimately reached, how did the parties move towards agreement?
Does the consultant create a space for dissent to exist? Does equipoise or
uncertainty have a function in the consultation?

Is there a delay in time necessary or possible to provide a check and a balance to a

hasty decision?

107

10) Has the risk vs. benefit ratio been explained in such a way that the patient or

surrogate understands?

Endnotes

 

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