W4 CASE STUDY

Excerpt taken from Burke, K.M. K. (2023). Nursing delegation and management of patient care (3rd
ed.). Elsevier Health Sciences (US). https://bookshelf.vitalsource.com/books/9780323696845 (Ch.
16 Ethical and Legal Issues in Patient Care, pp. 214-243.
Common Ethical Principles and Their Rules
1. Beneficence: Duty to do good and to protect the patient’s welfare. An example is carefully
adhering to infection-control principles for all patients.
2. Nonmaleficence: Principle of doing no harm. Nurses who maintain their skills are practicing the
principle of “doing no harm.”
3. Justice: Principle of fairness in which an individual receives what is owed. All patients receiving
the same level of culturally competent care is an example.
4. Autonomy: Respect for individual liberty and the person’s right to self-determination. Informed
consent is an example of adherence to the principle of autonomy.
5. Fidelity: Duty to keep one’s word. Senior leaders adhering to all contracts is an example of
leadership fidelity.
6. Respect for others: Right of people to make their own decisions, such as not telling a patient
what he “should do” but allowing him to make his own decision.
7. Veracity: Obligation to tell the truth. As a professional, this would be a requirement to admit
mistakes promptly or to not lie to a patient about bad news.
(List adapted from Little, 2003, p. 269.)
Such a conflict comes into place with the conflict between (1) the principle of autonomy (the duty to
respect the patient’s choice) and the duty to do only what the patient wants and (2) the principle of
beneficence (the duty to protect the patient’s welfare) and the duty to do only what the patient needs.
An example would be the conflict that arises when a patient refuses dialysis that will prolong their
life. Another example would be the situation in which the family does not want their frail elderly
mother given the news that her grandson has been hospitalized with a life-threatening injury. The
conflict here is between veracity and self-respect. The decision of what to do is guided by
beneficence. Often there is no correct decision. There are many questions that arise in clinical care,
such as the following (Schroeder, 1995):
• When do we refrain from using technology?
• When do we stop using technology, once it is started?
• Who is entitled to technology? Those who can pay? Those who are uninsured? Everyone, no
matter what?
During the COVID-19 pandemic, questions also arose with the potential of rationing ventilators.
In addition to the clinical situations that cause ethical conflicts, nurses and health care personnel
bring their own values and beliefs into the dilemma. There are times when the beliefs of the health
care personnel are the dilemma. An individual with a strong religious belief in the sanctity of life may
have ethical conflicts about do-not-resuscitate (DNR) orders, abortions, and genetic engineering.
Cultural values and traditions may also be at the center of ethical dilemmas. Nurses and patients
may believe that talking about death invites death to the door. It is important to be aware of your
beliefs and to not let them interfere with the legal and professional requirements of your position. If
you have beliefs that will prevent you from performing some of the requirements of your position, it is
necessary to inform your supervisor so that the patient needs can always be met.
Traditional Ethical Theories
The study of ethics has resulted in different theories that are used to guide decision making. Box
16.1 provides traditional ethical theories.
Box 16.1
Traditional Ethical Theories
Utilitarianism
• Decisions based on what will provide the greatest good for the greatest number of people.
• For example, the decision to force people with pulmonary tuberculosis into treatment is ethical,
according to this theory, because it protects the greater population from infection.
Teleology (or Consequentialist Theory)
• The value of a situation is determined by its consequences.
• Thus, the outcome not the action itself is what counts; sometimes referred to as the “all’s well that
ends well” ethical approach.
Deontology (or Formalism)
• An act is good only if it springs from goodwill.
• This ethical theory does not allow for actions based on the concept of “the end justifies the
means” (Little, 2003).
(From Kelly-Heidenthal, P. (2004). Essentials of nursing leadership and management. Clifton Park,
NY: Thomson Delmar Learning.)
As a nurse, you will be guided by both ethical theories and your own personal values and beliefs and
professional expectations (American Nurses Association [ANA], 2015; (International Council of
Nurses 2009). The fundamental values of nursing are expressed in the Code of Ethics for Nurses.
They are the values, such as respect for patient autonomy, acting in the patient’s best interest, and
maintaining professional competence, that all nurses commit to uphold when they enter the
profession.
American Nurses Association’s Code of Ethics for Nurses (see the link provided in this
section which provides the actual document and information from the source ANA)
Nurses must always act as patient advocates. The Nightingale Pledge in 1893 was viewed as the
first code of ethics for nurses. The ANA approved the most recent Code of Ethics for Nurses in 2015.
Revised Code of Ethics for Nurses
1. The nurse practices with compassion and respect for the inherent dignity, worth, and unique
attributes of every person.
2. The nurse’s primary commitment is to the patient, whether an individual, family, group,
community, or population.
3. The nurse promotes, advocates for, and protects the rights, health, and safety of the patient.
4. The nurse has the authority, accountability, and responsibility for nursing practice; makes
decisions; and takes action consistent with the obligation to promote health and to provide optimal
care.
5. The nurse owes the same duties to self as to others, including the responsibility to promote
health and safety, preserve wholeness of character and integrity, maintain competence, and
continue personal and professional growth.
6. The nurse, through individual and collective effort, establishes, maintains, and improves the
ethical environment of the work setting and conditions of employment that are conducive to safe,
quality health care.
7. The nurse, in all roles and settings, advances the profession through research and scholarly
inquiry, professional standards development, and the generation of both nursing and health policy.
8. The nurse collaborates with other health professionals and the public to protect human rights,
promote health diplomacy, and reduce health disparities.
9. The profession of nursing, collectively through its professional organizations, must articulate
nursing values, maintain the integrity of the profession, and integrate principles of social justice into
nursing and health policy (ANA, 2015).
International Council of Nurses’ International Code of Ethics for Nurses
The ICN International Code of Ethics for Nurses, most recently revised in 2012, is a guide for action
based on social values and needs. The code has served as the standard for nurses worldwide since
it was first adopted in 1953. The code is regularly reviewed and revised in response to the realities of
nursing and health care in a changing society. In 2020 the ICN launched a consultation for the code
expecting a newly revised code to be launched in 2021. The code makes it clear that inherent in
nursing is respect for human rights, including the right to life, the right to dignity, and the right to be
treated with respect. The ICN International Code of Ethics for Nurses guides nurses in everyday
choices and supports their refusal to participate in activities that conflict with caring and healing.
International Council of Nurses’ International Code of Ethics for Nurses
1. Nurses and people: The nurse’s primary professional responsibility is to people requiring
nursing care. In providing care, the nurse promotes an environment in which the human rights,
values, customs, and spiritual beliefs of the individual, family, and community are respected. The
nurse ensures that the individual receives sufficient information on which to base consent for care
and related treatment. The nurse holds in confidence personal information and uses judgment in
sharing this information. The nurse shares with society the responsibility for initiating and supporting
action to meet the health and social needs of the public, in particular those of vulnerable populations.
The nurse also shares responsibility to sustain and protect the natural environment from depletion,
pollution, degradation, and destruction.
2. Nurses and practice: The nurse carries personal responsibility and accountability for nursing,
practice, and maintaining competence by continual learning. The nurse maintains a standard of
personal health such that the ability to provide care is not compromised. The nurse uses judgment
regarding individual competence when accepting and delegating responsibility. The nurse at all
times maintains standards of personal conduct that reflect well on the profession and enhance public
confidence. The nurse, in providing care, ensures that uses of technology and scientific advances
are compatible with the safety, dignity, and rights of people.
3. Nurses and the profession: The nurse assumes the major role in determining and
implementing acceptable standards of clinical nursing practice, management, research, and
education. The nurse is active in developing a core of research-based professional knowledge. The
nurse, acting through the professional organization, participates in creating and maintaining
equitable social and economic working conditions in nursing.
4. Nurses and coworkers: The nurse sustains a cooperative relationship with coworkers in
nursing and other fields. The nurse takes appropriate action to safeguard individuals when their care
is endangered by a coworker or any other person (ICN, 2012a, ICN, 2012b; copyright © 2012).
One mark of a profession is the establishment of determination of ethical behavior for its members.
In addition to the ANA and ICN codes, specialty nursing organizations and hospitals have developed
codes of ethical behavior.
To assist you in dealing with the complex ethical issues that exist, hospitals have formed ethics
committees. These committees are interdisciplinary and include representatives from clinical
nursing, administration, medicine, social work, pharmacy, legal, and clergy. The work of ethics
committees lies in three areas (Agich & Younger, 1991; Dalgo & Anderson, 1995):
• Education (seminars and workshops for committee members)
• Policy and guideline recommendations (specific hospital policies)
• Case review (analyzes patient cases and provides clear options)
As a nurse, you have the right to call on the ethics committee for a referral. Cases are often referred
to the ethics committee for discussion. Issues commonly addressed by ethics committees are endof-life issues, organ donation, and futility-of-care issues.
A systematic approach to the identification and meaning of ethical issues has been suggested by
the University of Washington School of Medicine. The recommended “workup” includes review of
medical indications, patient preferences, quality of life, and contextual issues. This workup describes
“what is.” Then the decision making moves to the next phase and involves questions such as:
• What is the issue?
• Where is the conflict?
• What is this case about? Is it similar to other cases encountered? What is known about them?
• Is there a precedent? Is there a paradigm case (e.g., Karen Ann Quinlan, Nancy Cruzan, Terri
Schiavo, Jahi McMath)?
• Who is involved and what roles do they play?
Another model to address ethical issues is to:
• Identify the problem
• Tease out the ethical dilemma
• Gather objective and subjective data
• Look at alternatives
• Study the consequences of the alternatives
• Select the most appropriate alternative
• Compare the selected alternative with the clinician’s or executive’s value system
(Rundio et al., 2016, p. 127)
Bioethical Inquiry (2018) 15:259–268
https://doi.org/10.1007/s11673-018-9847-8
ORIGINAL RESEARCH
Can the Ethical Best Practice of Shared Decision-Making lead
to Moral Distress?
Trisha M. Prentice
& Lynn Gillam
Received: 17 June 2017 / Accepted: 6 December 2017 / Published online: 14 March 2018
# Journal of Bioethical Inquiry Pty Ltd. 2018
Abstract When healthcare professionals feel
constrained from acting in a patient’s best interests,
moral distress ensues. The resulting negative sequelae
of burnout, poor retention rates, and ultimately poor
patient care are well recognized across healthcare providers. Yet an appreciation of how particular disciplines,
including physicians, come to be Bconstrained^ in their
actions is still lacking. This paper will examine how the
application of shared decision-making may contribute to
the experience of moral distress for physicians and why
such distress may go under-recognized. Appreciation of
T. M. Prentice (*)
Neonatal Medicine, The Royal Children’s Hospital, 50
Flemington Road, Parkville, Melbourne, VIC 3051, Australia
e-mail: prenticet@student.unimelb.edu.au
T. M. Prentice
Newborn Research, Royal Womens’s Hospital, Melbourne,
Australia
T. M. Prentice : L. Gillam
Melbourne School of Population and Global Health, University of
Melbourne, Melbourne, Australia
L. Gillam
e-mail: lynn.gillam@rch.org.au
T. M. Prentice
Murdoch Children’s Research Institute, Melbourne, Australia
L. Gillam
Children’s Bioethics Centre, Royal Children’s Hospital,
Melbourne, Australia
these dynamics may assist in cross-discipline sensitivity,
enabling more constructive dialogue and collaboration.
Keywords Decision-making . Neonatology . Clinical
ethics . End-of-life issues . Professional–professional
relationship
Introduction
The concept of moral distress within healthcare originated within nursing literature, where it is reported to most
commonly arise when nurses feel required to provide
burdensome treatment which they regard as not in the
best interest of the patient and feel powerless to act to the
contrary. Although there is an increasing body of empirical evidence acknowledging the presence of moral distress in other healthcare professionals, including physicians (Hefferman and Heilig 1999; Solomon et al. 2005;
Trotochaud et al. 2015; Wall et al. 2015), the nature and
aetiology of this moral distress still requires exploration.
Attending physicians are typically seen as key decisionmakers and so it seems puzzling that their decisions and
actions could be constrained in a way that leads to moral
distress. Indeed, the usual scenario is the opposite of this:
physicians’ decisions are typically viewed as potential
constraints and therefore sources of moral distress to
others. This paper will argue that physicians can and
indeed feel constrained in a way that causes them moral
distress, and that the professional expectation to undertake shared decision-making is a key factor in this.
Though shared decision-making is only one of many
260
types of constraints physicians may feel it is a useful
place to begin a dialogue about physician moral distress.
The focus on physician moral distress in this paper
should not be read as de-valuing the significance of
moral distress experienced by nurses and other health
professions. Nor is it intended to stereotype in terms of
professional role or hierarchy. Rather, it is an attempt to
increase understanding of this important phenomenon
of moral distress by exploring the dynamics by which
physicians can experience moral distress within the
healthcare team. Physician moral distress is not more
important than nurses’ moral distress, but it may be
somewhat different in its source and expression. A
shared understanding of the nuances of moral distress
may assist in improving intra-professional communication and the general ethical climate in hospital units—
ultimately improving care for patients.
The Evolution of Moral Distress
The term moral distress was first coined by the nursing
philosopher Jameton in 1984 (Jameton 1984). Along
with Wilkinson, he refined the term to reflect the psychological distress that arises when an individual has a
clear moral judgement about a specific practice but is
prevented from responding accordingly due to societal
or institutional constraints (Jameton 2013; Wilkinson
1988). Constraints can either be external (e.g. involving
higher authorities, the law, or hospital administration) or
internal—such as self-doubt, fear of job loss, or lack of
courage (Austin et al. 2005; Wilkinson 1989; Hamric
et al. 2012). We will focus on external constraints. While
emotional distress of various types may be a common
phenomenon within healthcare—providers are frequently exposed to illness, suffering, and tragedy—moral
distress is distinct in that the distress is caused by the
constrained moral response (Austin 2012a). Similarly,
the term moral distress was intended to be distinct from
moral dilemmas, wherein two or more conflicting moral
principles apply but point to mutually conflicting
courses of action (Jameton 1984). Though there have
recently been some attempts to dissolve this distinction
between moral dilemmas and moral distress (Fourie
2015; Campbell et al. 2016), here we will maintain
Jameton’s classical definition of moral distress. For
though moral dilemmas may still cause some distress,
the distress results from moral uncertainty or being
unsure of how to act, rather than feeling sure that one
Bioethical Inquiry (2018) 15:259–268
is acting against one’s moral convictions (McCarthy and
Gastmans 2015). It is only the latter that threatens personal or professional integrity; a threat that is the hallmark of moral distress (Thomas and McCullough 2015).
Jameton later distinguished between two forms of
moral distress: initial and reactive (Jameton 1993). Initial distress referred to the negative feelings of frustration, anxiety, and anger that ensue from feeling powerless to act in accordance with one’s moral judgement.
Reactive distress is the secondary distress or lingering
negative feelings when one does not act upon one’s
initial distress; this is now more commonly called moral
residue (Sauerland et al. 2014). It may result in long
lasting regret or guilt (Jameton 1993). Epstein and
Hamric (2009) further explored the relationship between
initial and residue distress with what they called the
crescendo effect. While initial moral distress may decrease following the passing of an event, the moral
residue’s lingering serves to increase the baseline for
future moral distress. Over time, repeated crescendos are
theorized to result in a growing moral residue, evoking
stronger reactions in healthcare providers as they are
reminded of earlier distressing events. This relationship
of increasing moral distress with increasing experience
is supported in a number of studies in nursing staff
(Elpern et al. 2005; Epstein and Hamric 2009). However, it does not appear to be a universal phenomenon and
in particular appears not to apply to physicians (Hamric
et al. 2012). Chronic residue distress contributes to
burnout and potentially leaving one’s profession
(Sundin-Huard and Fahy 1999): Sauerland et al.
(2014) found that almost a quarter of nursing participants had left a position due to moral distress. Hamric
et al. (2012) found a similar rate in the nursing profession and also found that 16 per cent of physicians had
either left a previous position or were considering leaving a current position due to moral distress.
While there has been increasing appreciation that all
disciplines within healthcare are susceptible to moral
distress (Hefferman and Heilig 1999; Solomon et al.
2005; Trotochaud et al. 2015; Wall et al. 2015;
Whitehead et al. 2015), there remains little empirical
evidence about the interactions and team dynamics
(Bruce et al. 2015) surrounding such distress. This is
despite the recent moves to reconceptualize moral distress according to its Bmoral attributes^ by linking the
term to moral agency, integrity, and professional roles
(McCarthy and Gastmans 2015). Though the distress
may be experienced by an individual, it is shaped
Bioethical Inquiry (2018) 15:259–268
… not only by the characteristics of each individual (e.g. moral character, values, beliefs), but also
by the multiple contexts within which the individual is operating, including the immediate interpersonal context, the healthcare environment and the
wider socio-political and cultural context. (Varcoe
et al. 2012, 56)
Professional Roles and Ethical Climate
The professional role of a physician or nurse comes with
a prima facie duty to behave in certain ways and maintain a set of values within the cultural and traditional
norms, respecting the trust that the public places in those
roles. They are thus morally accountable to others including their patients, the institution for whom they
work, their colleagues, and the broader public (Cribb
2011). The environment in which these roles and values
are enacted is known as ethical climate.
Within the literature the accepted role of nurses is to
provide bedside care of patients and their families
(Cavaliere et al. 2010; Grundstein-Amado 1992b; Solomon et al. 1988; Grundstein-Amado 1992a; Walker
et al. 1991). This care often involves working in close
proximity with the patient and their family for prolonged
periods of time, with little opportunity for relief in
difficult or troublesome circumstances when compared
to the physician who is required to attend to other
patients and duties. Nurses are expected to act as strong
advocates for their patients to prevent harm (Corley
2002), yet traditionally have less decision-making capacity (Hamric 2000) within the medical hierarchy.
Furthermore they are often the agents carrying out the
specified treatment plan. Moral distress accounts have
their roots in this distinction of roles, with the combination of medical hierarchy and intensive medical therapies a common source of distress to nurses seeking to
fulfil their perceived duty. The distress may be particularly acute when their perceived duty is to provide
compassion and enable patients to die with dignity and
the medical decision is to continue intensive lifesustaining treatment or further attempts at cure.
Similarly, the role of the Bgood doctor^ or medical
professionalism has been comprehensively described.
Medical roles incorporate a variety of obligations as
well as character attributes or virtues (Beauchamp and
Childress 2001). Such virtues may include being
261
compassionate, benevolent, honest and even self-sacrificial, placing the patients’ needs above his or her own
(McDougall 2013; Beauchamp and Childress 2001). A
good physician should be attentive to the patients’ needs,
respect their autonomy and treat them fairly without
prejudice (Tsou et al. 2013). He or she must balance the
interests of the individual patient, their families, and the
interests of wider society. Professionalism may require
the physician to suppress his or her own emotions for the
sake of the physician–patient relationship (Tsou et al.
2013). The good physician should not only be competent
but also be committed to contributing to the advancement
of knowledge and evidence-based medicine.
Medical Professionalism and Shared
Decision-Making
The concept of shared decision-making encompasses
many of these professional values and has become of
central importance to the ideal doctor–patient relationship (Charles et al. 1997). Although shared decisionmaking is moving to a relationship between a team of
inter-professional providers and the patient rather than a
physician–patient dyad (Lewis et al. 2016; de Boer et al.
2012), we will focus here on the physician–patient
relationship. This will allow greater conceptual clarity
in analysing the basic phenomenon. Moving straight to
shared decision-making within a multi-disciplinary
team adds layers of complexity because nonconcordance of opinion within the healthcare team can
in itself be a source of moral distress (Bruce et al. 2015).
It is however reasonable to think the discussion that
follows could be extended to the team sharing responsibility for the medical decisions being made where
there is unity within the team.
Traditionally, decision-making was the domain of the
physician. He or she was expected to rely on his or her
knowledge and wisdom to act beneficently and nonmaleficently towards the patient; that is, to act in the
patient’s best interest. This paternalistic approach has
since given way to an understanding that patients have a
right to make judgements about what is the best medical
treatment for them and are unique in being able to
identify what is really in their best interests given that
they will need to live the consequences (McNutt 2004).
Shared decision-making arises from this broadened perspective. In shared decision-making the patient is no
longer passive; rather, decisions are shared between
262
the physician and patient with the goals of ensuring that
the patient receives the best-known treatment that serves
his or her interests. The patient benefits from improved
clinician–patient communication, knowledge, and risk
assessment that encompasses an assessment of the patient’s own values, goals, and circumstances.
However, the shared decision-making dynamic is
more complex when the patient cannot decide for him
or herself, as is the case for children or incompetent
adults. For these patients, parents or family members
usually act as proxy for the patients. Within this
decision-making partnership there are greater limits to
the proxies’ decision-making power as a proxy’s autonomous decision cannot be assumed to be equivalent to a
patient choosing for him or herself. The decisionmaking Bpower^ of the proxy is thus dictated by how
closely the proxy’s decisions align with the patient’s
known wishes (if previously stated/documented) or best
interests where personal preferences or values cannot be
known. The proxy’s decision-making authority is furthermore limited by the principle of harm (Diekema
2004). That is, the physician may choose to honour the
values and decisions of the proxy—even if considered
suboptimal for the patient—as long as the patient is not
subjected to probable harm (McDougall et al. 2016).
Yet in the case of a child, the patient’s best interests
are intrinsically linked with the interests of the family (in
this case the proxy), complicating the shared decisionmaking dynamic. The child cannot live in isolation but
can only be understood within the context of the family
unit. Generally parents are assumed to be in the best
position to know the interests of their own child (Katz
and Webb 2016). (At times, however, the parents’ and
child’s interests may appear to be in conflict, such as
where the parents may not have the resources or support
to be able to care for a child or where the parents wish to
disengage from their duty to care for their child.) Physicians have an ethical imperative to care for and consider the needs of family in addition to the needs of the
child (Jones et al. 2014) as i) promoting family’s interests indirectly promotes the child’s interests and ii) the
family’s interests have stand-alone moral weight. In
general, having a good therapeutic alliance with the
family better enables the physician to act in the patient’s
best interests while showing compassion and concern
for the family’s needs. The physician must ensure the
family feel supported and not isolated in making critical
decisions. Yet enabling families to participate in the
decision-making process has been shown to improve
Bioethical Inquiry (2018) 15:259–268
families’ satisfaction with end-of-life communication
(White et al. 2007) and enable better grieving processes
(McHaffie et al. 2001), enabling the physician to fulfil
their broader duty of care to the family, even beyond the
death of the child (Jones et al. 2014).
Though shared decision-making is central to medical
professionalism, it can become complex to enact due to
competing interests of those involved and due to the
multiple aims it seeks to serve. We will argue that in certain
situations shared decision-making, even though a key
aspect of ethical practice in medicine, can be one of the
external factors causing moral distress for doctors. We will
focus on neonatal medicine as an example to illustrate this.
Shared Decision-making, Moral dilemmas,
and Moral Distress
Before fully venturing into the effects of shared decisionmaking on moral distress, it is necessary to clarify how
moral distress and an emotional reaction to a moral
dilemma on the other hand, can be confused with each
other, in situations where physicians are attempting to
uphold their professional role in the neonatal setting.
In neonatal medicine, physicians and families must
live with uncertainty. Some conditions, such as severe
intraventricular haemorrhages, have very variable longterm outcomes published in the literature. Though a
physician will discuss the probable outcomes of a given
condition with a family, there will always be statistical
outliers, neonates who do much better—or worse—than
anticipated. In light of this uncertainty, physicians may
face the dilemma of which treatment options are most
appropriate. Together physicians and families must agree
upon a management plan, acknowledging the dilemma of
uncertainty while respecting the values of the family.
However, shared decision-making may also be a root
cause of moral distress. A physician upholding shared
decision-making by respecting the wishes of the family
may feel compelled to provide medical care he or she
believes is not in the patient’s best interests, based on his
or her assessment of the balance of benefits and burdens.
In doing so the physician believes his or her actions to be
morally wrong because the interests or views of the proxy
have been placed disproportionately above the best interests of the patient. Despite having a duty of care to the
family, the physician feels moral distress, believing they
have acted wrongly towards their patient. The nature of
this sense of compulsion to do what one believes is
Bioethical Inquiry (2018) 15:259–268
wrong is complex and somewhat difficult to understand.
The following case helps illustrate how this can happen.
Example
Ben, a preterm baby born at twenty-three weeks,
develops severe necrotizing enterocolitis at two
weeks of age. The surgeons perform a laparotomy
where they determine that there is no viable gut.
The neonate has significant lung disease and remains dependent on a ventilator. Additionally, the
neonate has bilateral intraventricular
haemorrhages and is already at significant risk
for poor long-term neurodevelopmental outcomes. The treating team have recommended redirection of care: specifically, withdrawing the
endotracheal tube while the child is in the family’s
arms and providing comfort until the baby dies.
The family refuse and want to continue intensive
care for their Blittle survivor.^ This would require
keeping the neonate on a ventilator and providing
total parenteral nutrition until an intestinal transplant could be considered. Such transplants are
still considered largely experimental in their institution with only one known survivor. The neonate
is critically unwell and the treatment team are in
agreement that ongoing intensive management is
only delaying death and prolonging suffering for
the neonate.
The physician has formed the view that survival is
not in this patient’s best interests: the burden of
intensive care is disproportionate. She knows that
medical ethics supports the view that where burdens outweigh benefits, intensive care may be
redirected towards comfort care. However, in upholding shared decision-making, she has decided
that redirection of care will not occur for this
patient until there is, at a minimum, assent
(Payot et al. 2006) from his parents, irrespective
of how strongly she (or the rest of her team)
consider that it is in the patient’s best interests to
die. While she believes keeping the baby alive is
not right for the baby, she is concerned about
adding to the grief of the family should she be
unable to resolve the medical impasse. Additionally, she is concerned the institution will not adequately support her should the matter be taken to
court. The societal expectation to not let children
263
die, particularly when the parents wish to continue, weighs heavily upon her. Yet she knows the bed
could be better used for many other babies
awaiting beds in the unit. The physician is also
aware that a number of the nursing staff are
feeling distressed by the decision and the need to
perform a number of potentially painful or uncomfortable procedures on the patient each day rather
than allow him Bto die with dignity.^ The physician has discussed the case extensively with other
senior physicians within the unit, sought advice
from the hospital ethics consultation group and
arranged debriefing sessions for any team members impacted by the case. However she has not
been able to resolve the tensions between the
treating team and the family.
Typically, a scenario like this will be presented as
either a case of moral distress or a moral dilemma
depending on whether it was presented in nursing or
medical literature respectively. Yet this can be a case of
moral distress for both professions. Within nursing literature, this type of scenario is one of the most common
causes of moral distress within acute care—that is, being
required to provide intensive, burdensome treatment
which one believes wrong because of insufficient
counter-balancing benefits and being powerless to act
to prevent this because of the medical hierarchy (Austin
et al. 2009). As described by Oberle and Hughes (2001),
while physicians bear the burden of decision-making in
the context of uncertainty, nurses must live with those
decisions. There may be the perception that the roledefined Bcontrol^ medical staff have over the situation
as a result of being at the top of the medical hierarchy,
leaves them free from constraints, safeguarding their
moral agency and protecting them from moral distress.
The nurse, in contrast, is presented as voiceless and
ineffectual and must deal with the physical and psychological consequences of moral residue. Within this nursing literature an emphasis is often placed on the psychological and physiological consequences of the distress
rather than the moral component of the judgements
(Austin 2012b; Corley and Minick 2002; Epstein and
Hamric 2009; Hanna 2004). In contrast, in the medical
literature, little is made of the potential psychological or
emotional response to these Bdilemmas.^
However, as this case demonstrates, physicians do
not straightforwardly have full control; certainly not
control they can exercise without consequences. So,
rather than being a moral dilemma, we argue that the
264
above case should be regarded as an instance of moral
distress, where the physician is constrained by the power of expectations of shared decision-making to the
degree that they feel unable to avoid doing things to
their patient that they (and likely many of their colleagues) believe to be morally wrong. This situation,
we suggest, has arisen partly from the evolution of
emphasis on the Bshared^ aspect of shared decisionmaking obscuring the limits of both shared decision
making and the parents’ legitimate (AAP Committee
on Bioethics 2016) decision-making power. Where
medical impasse occurs, the decision can no longer be
truly Bshared.^ Either the parents or the physician will
feel constrained by the decision that is upheld, and
potentially experience moral distress. Shared decisionmaking provides no satisfactory solution or way to
move beyond the impasse. Assessing the balance of
benefit and harm in such circumstances depends on
value judgements, not just on matters of objective fact.
Indeed, current practices therefore tend to lean towards
favouring the family’s judgement of what is in the
child’s best interests (Gillam et al. 2017; Albersheim
et al. 2010) and overruling the family or proceeding to a
court of law is generally discouraged (AAP Committee
on Bioethics 2016). This leaves the physician feeling
constrained to do what the parents want, providing
treatment on the basis of the parents’ values rather than
their own. With increasing duration and intensity of
suffering of the child, doing what the parents want tips
the moral balance disproportionately against the interests of the baby, resulting in moral distress in medical
and nursing staff alike. Here, the desire to continue with
treatment until parents come to agree with redirection of
care has been for the parents’ interests and not the child.
Given the disproportionate emphasis sometimes placed
on the parents’ perspective in shared decision-making,
the physician may also fear that her colleagues and the
institution will not support her if she acts against the
wishes of the family for the sake of the child.
The physician may reason that with time and clear
communication the family may agree to redirection of
care to palliative care. However, multiple discussions
may be required before the parents and the physician
concur on the best interests of the child. During this time
the child will likely have been subjected to some uncomfortable or burdensome procedures required to
maintain physiological stability. Though the eventual
outcome (that the baby dies) may be considered the
morally appropriate outcome, both medical and nursing
Bioethical Inquiry (2018) 15:259–268
staff may be morally distressed by feeling that they are
not (at least at that point in time) acting in the patient’s
best interests.
Though there often appears to be a continuum
between moral dilemma and moral distress due to
medical uncertainty, at some point the physician in
the case above has clearly felt constrained by the
obligations to practice shared decision-making and
is distressed at not acting in the patient’s best interests, meeting the classical definition of moral distress as described by Jameton (Jameton 1984).
Shared decision-making has so strongly been
aligned with medical professionalism and the expectations of patients and their families that the limits of
shared decision-making are not so easily recognized
within clinical practice. To make a seemingly autocratic decision in favour of the patient’s best interests when shared decision-making is the norm, can
psychologically feel to be going against role defined
values, the culture of medical institutions, and the
ethical imperative to care for the family. Shared
decision-making can therefore act as a constraint
for the physician in acting in the best interest of
the patient and thus a source of moral distress for
both medical and nursing professionals alike. The
outward expression of moral distress may however
differ between the two professions.
The Impact of Professionalism On the Recognition
of Moral Distress
Medical professionalism has created an expectation
for physicians to be in control of their emotions.
This may mask the internal turmoil or Bdistress^ of
physicians. This was reflected in a small interprofessional qualitative study on moral distress
within the ICU that found a contrast between the
withdrawal or detachment of physicians to the
Bemotional investment^ of nurses (Bruce et al.
2015). In light of literature that has initially focused
on the psychological expression of Bdistress^ of
staff, it is not surprising that medical literature tends
to use the language of dilemmas rather than moral
distress. Lutzen’s usage of the term moral stress
(Lützén et al. 2003; Lützén and Kvist 2012) rather
than distress may be a useful one in gaining a
common language between medical and nursing
staff, in addition to returning the emphasis to the
Bioethical Inquiry (2018) 15:259–268
moral component rather than the psychological expression. Conversely, this may also miss the point
that physicians can also be distressed despite having
a different outward expression. Though the overt
outward expression of moral distress may be limited
in physicians, the threat to personal integrity and
moral residue can still lead to disillusionment,
clouding future decision-making and negatively
impacting on patient care. There is no reason to
believe that this distress should have any less impact
on patient care than nursing moral distress; therefore
it should be addressed in order to improve patient
outcomes.
Why Acknowledging Moral Distress
Within the Medical Profession Matters:
The Challenge to Integrity and Moral Climate
Moral dilemmas may keep healthcare workers
awake at night but shouldn’t challenge personal
integrity. Reasonable individuals may disagree about
what a best course of action may be in uncertain and
difficult circumstances. Though the decision remains
a difficult one, each option is potentially of morally
equivalent value. Moral distress, however, is the
feeling that one has failed to act according to one’s
moral conviction. It strikes at one’s integrity and
threatens one’s fulfilment of professional obligations
to act in a patient’s best interest. Lützén disputes this
distinction, pointing to the fact that there is to date
no evidence that moral distress causes a Bdifferent
type^ or intensity of distress than that caused by a
moral dilemma (Lützén and Kvist 2012). However,
to the authors’ best knowledge, no empirical study
has yet looked for this distinction.
Importantly, Repenshek (2009) questions whether
many described cases of moral distress such as the case
study above are better defined as discomfort with moral
subjectivity rather than a real inability to act due to
constraints. Here, discomfort with moral subjectivity
refers to the distress that arises from conflicting personal
values held by different moral agents, when there is no
objective way of adjudicating between the differing
views, rather than the distress that arises from being
constrained to perform an objective moral wrong-doing.
Others have used similar arguments to suggest we
should dissolve the distinction between moral dilemmas
and moral distress, arguing that one cannot be truly
265
constrained if there is also reasonable disagreement
about best interests (Campbell et al. 2016; Fourie
2015). Repenshek is correct that there is much moral
subjectivity that underscores end-of-life decisionmaking in the neonatal intensive care unit, including
but not limited to judgements of best interest. As implied by Weir, what is a moral dilemma to one may be a
source of moral distress to another if they hold a different set of moral values (Weir et al. 2011). However,
though there may be reasonable disagreement about
what constitutes the best interests of a patient, for the
person experiencing moral distress with a sincere belief
that they are not acting in the patient’s best interests, the
phenomenon of moral distress is still very real. Thus it
does not take away from the argument that physicians
can experience moral distress due to feeling constrained
by parental wishes—even if another physician would
not experience moral distress in this situation but only a
sense of facing a dilemma.
Conclusions
Moral distress must be addressed within the medical
profession. Due to current conceptualizations of moral
distress and medical professionalism—including shared
decision-making—moral distress in physicians is potentially under-recognized in clinical practice. While
the negative impacts of moral distress can be expected
to be comparable between medical and nursing professionals, the outward expression of moral distress may
differ. The professional behaviour of physicians often
involves suppression of emotions and potentially withdrawing while looking after the potentially conflicting
interests of the child, his or her family, and the staff
caring for the child. With a traditional account of moral
distress focusing on the outward emotional response,
the distress of physicians may appear of lesser intensity
and frequency when compared with the nursing population. Furthermore, the mostly widely used tool to
measure moral distress—Corley’s Moral Distress Scale
(Corley et al. 2001)—was based on a limited conceptualization of moral distress and on research by and on
nursing staff within predominantly adult acute care
settings. Though modified versions have been created
for paediatric populations and physicians, these were
based on a small physician population and are known to
have a reduced reliability in this setting (Hamric et al.
2012). Intervention programmes are now being
266
developed based on these limited conceptualizations
despite a limited understanding of the nature and intensity of moral distress within physicians. These
programmes have very mixed outcomes depending on
the ethical climate of the institution (Hamric et al. 2012;
Okah et al. 2012).
Acknowledging parents as a potential Bconstraint^ is
not intended to undermine their role in decision-making.
The converse may in fact be true. Disillusionment with
the decision-making process may encourage physicians
to revert to conducting difficult end-of-life discussions
in a more paternalistic manner in order to avoid similar
distress in the future. Acknowledging and addressing
moral distress may help to overcome physicians’ fears
and encourage physicians to engage families in the
decision-making process, further enhancing the physicians’ understandings about how to treat the patient and
the family unit with care and compassion. Indeed, when
shared decision-making works well, with physician and
parents communicating openly and constructively, this
can protect against moral distress in the physician.
A greater appreciation of moral distress within physicians may aid in creating a moral climate where concerns
can be voiced and discussed in a constructive manner
amongst healthcare providers. Moral distress may not
reflect objective error or moral wrongdoing within the
unit, when all things are considered, but does often reflect
an environment where there has been insufficient ethical
discussion that incorporates the views of all involved
(Epstein and Hamric 2009). Nurses and junior medical
staff must not feel alone in their distress. Acknowledging
the moral distress of physicians and the constraints they
feel may help to restore team unity rather than promote
victimization. Moral distress should be a flag for collaboration of opinions and an opportunity to clarify where
ethical permissibility lies (Wilkinson et al. 2016; Thomas
and McCullough 2015). It can be a reminder that all
members of the team are working towards the same goal
of upholding the best interests of the patient, even when
that goal may require patience, taking time to achieve.
Collaboration, especially in culturally diverse units, will
enable exploration of value systems and enable a broader
conversation with parents.
While societal expectations of physicians’ roles may
change, the physician–patient relationship is likely to always remain central to medical professionalism. Recognizing and addressing the impact of this relationship on moral
distress within the medical profession may go some way to
improving ethical climate and ultimately patient care.
Bioethical Inquiry (2018) 15:259–268
Funding This research was supported by a NHMRC postgraduate
research scholarship, GNT1150839. The contents of this publication are solely the responsibility of the authors and do not reflect
the views of the NHMRC.
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