Download a framework for understanding moral distress among palliative care

JOURNAL OF PALLIATIVE MEDICINE
Volume 16, Number 9, 2013
ª Mary Ann Liebert, Inc.
DOI: 10.1089/jpm.2012.0490
A Framework for Understanding Moral Distress
among Palliative Care Clinicians
Cynda Rushton, PhD, RN, FAAN,1 Alfred W. Kaszniak, PhD,2 and Joan Halifax, PhD 3
Abstract
Background: Palliative care clinicians confront suffering as they care for people living with life-limiting conditions. When the degree of suffering becomes unjustified, moral distress can ensue. Promising work from neuroscience and social psychology has yet to be applied to clinical practice.
Objective: Our objective was to expand a social psychology model focusing on empathy and compassion in
response to suffering to include an ethical dimension and to examine how the interrelationships of its proposed
components can assist clinicians in understanding their responses to morally distressing situations.
Analysis: In the clinical context, responses to distressing events are thought to include four dimensions: empathy
(emotional attunement), perspective taking (cognitive attunement), memory (personal experience), and moral
sensitivity (ethical attunement). These dynamically intertwined dimensions create the preconditions for how
clinicians respond to a triggering event instigated by an ethical conflict or dilemma. We postulate that if the four
dimensions are highly aligned, the intensity and valence of emotional arousal will influence ethical appraisal and
discernment by engaging a robust view of the ethical issues, conflicts, and possible solutions and cultivating
compassionate action and resilience. In contrast, if they are not, ethical appraisal and discernment will be
deficient, creating emotional disregulation and potentially leading to personal and moral distress, self-focused
behaviors, unregulated moral outrage, burnout, and secondary stress.
Conclusion: The adaptation and expansion of a conceptual framework offers a promising approach to designing
interventions that help clinicians mitigate the detrimental consequences of unregulated moral distress and to
build the resilience necessary to sustain themselves in clinical service.
Introduction
which the person is aware of a moral problem, acknowledges
moral responsibility, and makes a moral judgment about the
correct action; yet, as a result of real or perceived constraints,
participates in perceived moral wrongdoing.’’7
Through research and anecdotal reports, moral distress is a
reality of clinical practice. The complexity of clinical care,
combined with clinicians who are often stressed, create an
environment where moral distress flourishes and therefore is
unlikely to be eradicated. We must consider how to work with
the suffering of caregivers in ways that support patients,
families, clinicians, and institutions to provide care with the
highest level of integrity, dignity, and respect.
Methods for dealing with moral distress have focused
primarily on developing skills in moral reasoning, communication, and conflict resolution; interdisciplinary collaboration; system reforms; mediation; ethics consultation;
grief counseling; and employee assistance programs.8,9
P
alliative care clinicians routinely confront suffering
as they care for people living with life-limiting conditions.
They witness their patient’s suffering as they provide intensive
interventions aimed at promoting healing, improving quality of
life, relieving symptoms, and supporting dignified care at the
end of life. The alleviation of suffering is a primary goal of
nursing and medicine.1–3 Yet there are instances when the balance of benefit and burden that patients must tolerate to live
longer becomes untenable. Like their patients, clinicians suffer
as they attempt to fulfill their ethical obligations and maintain
their integrity as individuals and professionals.4,5 Nurses, for
example, report that when the degree of pain and suffering
becomes unjustified, moral distress ensues.6
Moral distress is defined as ‘‘the pain or anguish affecting
the mind, body or relationships in response to a situation in
1
School of Nursing and Medicine, Berman Institute of Bioethics, Johns Hopkins University, Baltimore, Maryland.
Department of Psychology, Neurology, & Psychiatry, University of Arizona, Tuscon, Arizona.
3
Upaya Institute, Santa Fe, New Mexico.
Accepted April 30, 2013.
2
1
2
A promising body of work that has not been applied to instances of moral distress involves neuroscience and social
psychology research on empathy, compassion, and empathic
distress. This article expands a model developed in social
psychology to include an ethical dimension and suggests how
the interrelationships of proposed components can assist clinicians to understand their responses to morally distressing
situations.
Empathy, Sympathy, and Compassion
The act of caring for seriously ill or dying people demands
empathy, sympathy, and compassion, three closely related
responses. Empathy ‘‘denotes an affective response to the
directly perceived, imagined, or inferred feeling state of another being.’’10 It occurs when one perceives or imagines another’s affect, triggering a response that fully or partially
mirrors the other’s affect. Empathy also involves self-awareness
and the ability to distinguish self from other, distinguishing
empathy from mere emotional contagion.11–13 In contrast,
sympathy10 refers to a genuine concern for another’s welfare
or situation conveyed by a recognition or understanding of
the circumstances or feelings (‘‘I’m sorry for your loss’’). It is
oriented toward the other rather than the self, may be impersonal or personal and involve feelings of pity, sorrow, or
anguish.14 Although empathy and compassion are closely
related, compassion is the other-oriented ‘‘emotion one experiences when feeling concern for another’s suffering and
desiring to enhance that person’s welfare.’’15 Compassion
optimally involves a quality of presence that conveys stability
and resilience, with a balanced concern and heartfelt connection, but is not depleting or overwhelming to either person.16 It reflects the individual’s character through a virtuous
concern for the welfare of others and conveys an ‘‘inherent
regard and respect’’ for another.17 These three responses,
although admittedly conceptually related, are integral for
understanding the experience of moral distress, as moral distress may undermine empathy, cause personal distress, and
lead to moral outrage, burnout, or acute secondary stress.18
The interface between moral distress, empathy,
compassion, and personal distress
An expanding body of research is evolving within neuroscience and social psychology focusing on empathy and
compassion in response to suffering.19 A fruitful area of exploration involves how clinicians respond to the distress and
suffering of others, a crucial aspect of palliative care. Taken
further, these research findings can help clinicians to recognize and respond to their own sources of distress and the
influence of them on the way they respond to the suffering of
others.
Batson20,21 suggests that two different emotions motivate
people to help others: empathic concern and personal distress.
Empathic concern, an other-focused emotion, occurs when
witnessing another’s suffering. Typically it involves feelings
such as empathy, compassion, and tenderness. Personal distress can also motivate a person to help in relieving another’s
suffering. However, it is focused on the self and is prompted
by the need to relieve one’s own uncomfortable feelings.22
This can lead to behaviors motivated by a desire to protect
oneself from negative emotional arousal that occurs with selffocus when observing another who is suffering.22,23
RUSHTON ET AL.
Eisenberg24,25 elaborated further on Batson’s concepts. She
proposed that the preconditions for ‘‘empathic arousal’’ that
can precipitate either positive or aversive responses include
empathy (emotional attunement), perspective taking (cognitive attunement), and memory (related to personal experience). Seeing another in pain, for example, gives rise to
emotional arousal, reflected in activation within emotionrelated brain areas, such as the anterior insula, anterior
cingulate, and amygdala.22,26 When arousal in response to
another’s suffering is not regulated, it can give rise to personal
distress,24 thereby undermining the possibility for expressing
compassion,25 leading to either avoidance or self-focused
behaviors.
Self-focused behaviors are those that involve relieving
one’s own uncomfortable feelings in response to the suffering
of another. Eisenberg notes that compassion and personal
distress appear to be related to individual differences in selfregulatory capacities.25 Brain systems involved in emotion
regulation are typically activated when compassion for social
or physical pain is elicited,27 and when this emotional arousal
is not regulated, it can lead to ‘‘empathic over-arousal.’’24,28
Responses such as generalized discomfort, concern about
one’s own welfare, anxiety, agitation, autonomic arousal,
intense sadness, and (sometimes) anger signal empathic overarousal.29
A Framework for Understanding Moral Distress
Batson’s20 model and Eisenberg’s elaboration24,25 provide a
useful framework for identifying new ways of responding to
the situations that cause moral distress among clinicians. We
extend their prior work to include the ethical dimensions
of responses to distressing events that involve conflicting
moral values, commitments, or perspectives. In addition to
emotional attunement (empathy), cognitive attunement
(perspective taking), and personal experience or memory,
responses to morally distressing events also include moral
sensitivity, discussed below. We propose that these interrelated and dynamically intertwined factors create the preconditions for how one responds to a triggering event instigated
by a perceived ethical conflict or dilemma. The critical interplay of the practice environment in contributing to or modulating the impact of individual responses to moral distress is
beyond the scope of this paper.
Moral sensitivity
Responding to clinically challenging cases requires ethical
awareness, sensitivity, and attunement as antecedents for
discernment and action.30 Moral sensitivity is the ‘‘ability to
recognize the presence of moral issues in real-world situations.’’31 Specifically, it involves the ability to (1) discern the
morally salient dimensions of the situation;32 (2) perceive
and interpret the perspectives, feelings, and responses of
others; and (3) discern how one’s actions may affect self and
others.34 It requires sufficient tolerance of ambiguity to simultaneously evaluate the possible impact of various actions
from multiple perspectives. This interpretive awareness may
reveal the need to take moral action and activate the cognitive processes for moral reasoning. Illuminating the moral
contours of specific situations—the attitudes, values, and
moral commitments of all those involved—invites more
nuanced moral analysis, a cognitive process that can impact
FRAMEWORK FOR UNDERSTANDING MORAL DISTRESS
3
the range of factors and choices considered, and the actions
selected and implemented.
Clinicians in whom moral sensitivity is not well developed
may fail to recognize an occasion for moral action, or tolerate
morally objectionable acts.34 Ambiguity gives rise to apathy
or confusion. Overlooking the negative impact of certain
behaviors on patients, families, and others may lead to inappropriate acts that undermine integrity.
We postulate that moral sensitivity (ethical attunement)
coexists with empathy (emotional attunement), perspective
taking (cognitive attunement), and memory (personal experience) to create the conditions on which arousal and regulation depend. Conceptually, moral sensitivity is related to
conscience, that aspect of oneself that evaluates one’s own
actions. Once activated via the autonomic nervous system and
conscious or unconscious memory, conscience assesses a situation and engenders emotions in response.35 When moral
values, internalized norms, or commitments are aligned,
wholeness is preserved and feelings such as contentment,
honor, or self-respect arise; ethical values are embodied in
each interaction and lead to integrity, preserving moral action.
In contrast, when a situation presents conflicting moral demands with no clear path to resolution, moral values are
compromised and feelings of remorse, guilt, self-disgust,
humiliation, or regret may occur, instigating self-focused actions aimed at relieving personal and/or moral distress.
Eisenberg29 postulates that individuals who are exposed
repeatedly to negative emotional arousal are vulnerable to
experiencing personal distress. This suggests that clinicians
who experience secondary or vicarious trauma as a result of
their constant exposures to suffering and tragedy are at higher
risk for personal distress;36 and arguably, moral distress is
intensified when they are repeatedly exposed to morally
distressing situations. Similarly, if their personal distress
arises from an ethical dilemma and is unrelieved, moral outrage can ensue.37–39 We postulate that the culmination of
unrelieved moral or personal distress can be unregulated
action, burnout, or acute secondary stress.
dilemmas is the cumulative ‘‘crescendo’’ effect of unresolved
experiences of moral distress34 and the possibility that these
memories may exacerbate the distress.
We propose that when feelings in response to the distress
(both related to the ethical conflict and one’s ability to take the
correct ethical action) are modulated through mindful
awareness, the emotional connection to the patient and their
predicament contribute to one’s ethical attunement to the
situation and can instigate the moral motivation to uphold the
violated ethical value, principle, or standard and align integrity. According to Batson’s model, if arousal is regulated
and self and other are distinguished, then the aroused state
can give rise to compassion, with the manifestation of otherfocused behaviors such as altruism and principled compassionate action that preserves integrity and supports resilience.
Eisenberg25 proposes that individuals who can regulate their
emotions and behavior are more likely to express compassion
than are less regulated individuals. Without emotion regulation and processes by which self and other are differentiated,
moving from empathy to compassion is unlikely.25
When the aroused state is not regulated through mindful
appraisal that gives rise to a response of compassion (sympathy is the term used by Eisenberg), because the experience
of another’s suffering becomes unbearable and unregulated,
personal distress or in the case of ethical concerns, moral
distress, can occur.41 If clinicians are unable to regulate their
emotions or responses as a result of negative empathic arousal
that exceeds their capacity to maintain neutrality and composure, it can lead to an experience of aversion and to three
predictable responses: (1) avoidance and/or abandonment of
the patient and family physically, emotionally, or spiritually
(flight); or (2) angry or contentious responses that lead to selffocused behaviors aimed at mitigating the caregiver’s own
suffering42 (fight); or (3) ‘‘freeze’’ or numbing,43 a generalized
shutting down emotionally and being immobilized to respond or take appropriate action to address the situation.38
We postulate that these responses to other sources of distress
also occur in response to moral distress.
Emotional arousal and regulation
Ethical appraisal, discernment, and action
Arousal involving ethical quandaries may arise because of
a perception of value conflicts, confusion about the proper
course of action, uncertainty about which course of action to
pursue, or a real or perceived inability to do the ‘‘right’’ thing.
This may be coupled with witnessing the suffering of another,
attempting to relieve another’s suffering, or arousal of
empathic concern.4 Conceivably, when clinicians become
aroused by a distressing event, various positive emotions can
be aroused, such as empathy or positive regard, or negative
emotions such as sadness, guilt, remorse, frustration, or anger.
For example, witnessing the unrelieved pain and suffering of
a dying patient may instigate empathy, advocacy, and action
to secure the therapies needed for relief in order to uphold the
principle of ‘‘do no harm.’’ Likewise, emotional triggers associated with perceived inappropriate or burdensome use of
technology can lead to requests for ethics consultation in response to an initial arousal precipitated by value conflicts.40
Once aroused, the response and degree of emotional regulation will likely be informed by the degree of emotional, cognitive, and ethical attunement and personal experience or
memory. Of particular importance in the context of ethical
Concurrently, the perceived violation of an ethical value,
principle, or standard that accompanies an ethical dilemma may
ignite moral emotions or feelings of discomfort, anxiety, confusion, dissonance, uncertainty, or anger and other automatic and
deliberative processes that underlie ethical behavior. This could
instigate a cognitive process of ethical appraisal, discernment,
and reasoning, as one determines the ethically justified response.
Discernment is primed by moral sensitivity to the ethically
salient dimensions of self, others, and the situation, and to the
ethical reasons that support various courses of action.34 Once
recognized as a situation where action is needed, cognitive
processes aimed at understanding the conflicting perspectives,
exploring the nature of the value conflicts, identifying the range
of ethically permissible actions, and determining the best course
of action (all things considered) are activated. This iterative
process involves an appraisal of how one’s actions affect self and
others and how the actions taken or not taken promote or undermine integrity and/or result in participation in wrongdoing.44 The preconditions, described above, support or undermine
a person’s capacity to respond in an emotionally balanced, ethically grounded, and compassionate manner33 (see Figure 1).
4
RUSHTON ET AL.
FIG. 1.
Framework for addressing moral distress.20,21,24,25,38
Consequences of clinician distress
When clinicians experience personal or moral distress that
cannot be modulated, the consequences may include moral
harm or outrage, burnout, or acute secondary stress. Moral
outrage has been described as anger provoked by a perceived
violation of an ethical standard such as fairness, respect, or
beneficence.41 Pike45 describes moral outrage as ‘‘characterized
by energy-draining frustration, anger, disgust, and powerlessness.’’ Burnout, in contrast, is ‘‘a state of physical, emotional,
mental exhaustion caused by long-term involvement in emotionally demanding situations.’’46 Burnout tends to emerge
gradually as a result of emotional exhaustion and job stress
producing symptoms ranging from mild short-term disturbances, to gradually more-recalcitrant disturbances that can
become chronic. In contrast, secondary stress occurs in response
to the pressures that are placed on clinicians who care for others
in need.18 Acute secondary stress (sometimes referred to as
vicarious trauma) occurs in response to repeated exposure or
re-exposure to suffering and trauma that creates helplessness,
confusion, or frustration in response to one’s inability to relieve
the suffering or relate to it in ways that are not draining or
exhausting and thereby compromise the person’s well-being.18
In contrast, if mental and emotional stability are maintained and distress modulated, the appraisal and discernment
process can yield principled compassionate action: an adherence to the highest ethical standards while grounded in a
robust process of compassion. In this sense compassion is a
rigorous, balanced stance of a ‘‘strong back’’ of equanimity
that allows one to be clear, courageous, and principled in the
midst of the most challenging circumstances with the soft
front of open-heartedness, kindness, and empathy leading to
compassion.16 Principled compassion is founded on an unwavering commitment to integrity. It does not imply apathy,
disregard, or indifference to egregious situations. A hallmark
of principled compassionate action includes leveraging one’s
moral outrage by executing unpopular decisions and when
appropriate, conscientiously objecting to ethically compromising situations, despite resistance, in a fair, modulated
manner.47
Ideally, the outcome of being able to modulate moral distress
is a state of equilibrium, integrity, and resilience. Resilience, the
ability to return to a restorative limit of function in the midst of
challenging circumstances, relies upon focused awareness and
modulation of somatic, emotional, spiritual, and moral stimuli
within a zone of stability and well-being. Resilience suggests
FRAMEWORK FOR UNDERSTANDING MORAL DISTRESS
5
that although the frequency of ethically problematic events
may not change, the intensity of morally distressing situations
may not result in detrimental consequences.
Author Disclosure Statement
Discussion
References
For the purposes of illustration, we postulate (see Figure 1)
that if empathy, perspective taking, memory, and moral
sensitivity are highly aligned, the intensity and valence of the
emotional arousal will influence the ethical appraisal and
discernment of the situation by engaging a robust view of the
ethical issues, conflicts, and possible solutions. The confluence
of these factors helps to focus attention on the ethically salient
features of the situation; supports the synthesis of multiple
perspectives; and facilitates the conceptual analysis of the
competing claims and obligations that, when combined with
emotional regulation and equanimity, is more likely to produce empathy-related responses (compassion) and otherfocused behaviors leading to principled compassionate
action, integrity, and ultimately greater resilience. In contrast,
if empathy, perspective taking, memory, and moral sensitivity are not aligned, we postulate that ethical appraisal and
discernment are deficient (because moral sensitivity is not
well honed); creating emotional disregulation (particularly
empathic over-arousal); and potentially leading to personal
and moral distress and ultimately self-focused behaviors, including avoidance, abandonment, and/or numbing; or resulting in unregulated moral outrage, burnout, or acute
secondary stress. Ultimately, this state of disregulation potentially undermines the ethical reasoning process. Without
modulated moral sensitivity, salient features of the situation
may be overlooked, overemphasized, or disregarded; ethical
actions are then more likely to be guided by unconscious
projections, unreflected assumptions, and faulty reasoning
leading to actions that lack sufficient ethical justification or are
unethical. Whether the relationships reflected in the proposed
framework are valid will require systematic empirical evaluation and study. Although presented here as a linear sequential path, we postulate that the elements are interrelated
and occur in a dynamic, iterative spiral.
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Conclusion
Moral distress is an unavoidable reality of palliative care
practice. Clinicians who experience it repeatedly need new
ways to understand their experiences and to find alternatives
for addressing it. The adaptation and expansion of a framework grounded in neuroscience and social psychology offers
a promising approach to designing interventions that mitigate
the detrimental consequences of unregulated moral distress
and that build resilience. Research is needed to test the
framework’s efficacy and to document the impact on individual clinicians and ultimately the care that is provided to
patients and families.
Acknowledgments
The authors acknowledge their colleagues of the Being
With Dying professional training for their invaluable contribution to the development of this model and the various
researchers, cited in this paper, whose work has inspired us.
Gratitude to Chery Kay Zogg and Kelly Wilson-Fowler for
assistance with manuscript preparation.
No competing financial interests exist.
6
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Address correspondence to:
Cynda Rushton, PhD, RN, FAAN
Berman Institute of Bioethics
1809 Ashland Avenue
Baltimore, MD 21205
E-mail: [email protected]