Moral Distress and Moral Disempowerment Alisa Carse Narrative Inquiry in Bioethics, Volume 3, Number 2, Fall 2013, pp. 147-151 (Article) Published by Johns Hopkins University Press DOI: https://doi.org/10.1353/nib.2013.0028

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NARRATIVE SYMPOSIUM

Commentary Moral Distress and Moral Disempowerment Alisa Carse1* 1) Georgetown University *Correspondence concerning this article should be addressed to: Alisa Carse, Department of Philosphy, New North 215 Washington, DC 20057-1133. Email: [email protected]

Conflicts of Interest. The authors report no conflicts of interest. Abstract: Moral distress can consist in anxiety or concern about one’s capacity to meet challenges to one’s integrity; it can also consist in the sense that one has failed to meet these challenges, betraying fundamental moral values or commitments. When the sense of moral failure is compounded by feelings of frustration or impotence, of being constrained or impeded in one’s ability to act as one believes one ought, one experiences moral disempowerment. Drawing on narratives of moral distress emerging from work in the clinical context, this essay explores a distinction between cases in which moral distress does, and does not, center around the experience of moral disempowerment. When moral distress is tied to moral disempowerment, the acute personal toll is joined with broader moral costs, for effective moral agency is stymied. If we are to support individuals’ resilience and effectiveness in working constructively with moral distress, we need to understand and redress the social, systemic, and institutional factors contributing to moral disempowerment. Key Words. Asymmetrical Authority, Asymmetrical Power, Commitment, Conflict, Integrity, Moral Ambiguity, Moral Compromise, Moral Distress, Moral Disempowerment, Moral Gray Zones, Moral Repair, Narrative Ethics, Trust, Voicelessness

1. These compelling narratives emerge from clinical work that truly engages, “the difficult, the unimaginable, and the often painful circumstances of life (Hallett).” These are stories of moral pain and anguish; they tell of deception, abandonment, and injustice, of eroded trust and diminished moral confidence, of failures of communication, and failures of respect and concern—and all this in circumstances in which moral stakes are high and the potential for suffering great. These are also stories of transformation, growth, and renewed moral agency. The language in which feelings of moral distress are captured is striking. We hear of “deep sadness,”

“anger,” “guilt,” “resignation,” and “despair.” Hallett writes of “feeling alternately hypocritical and callous;” Murray of feeling “overwhelmed, powerless and frustrated,” “suffering from nightmares, headaches, fear, anxiety, depression, difficulty concentrating, and problems of self–esteem.” Nathanson writes, “parts of my body felt as though they didn’t belong to me and my words seemed to come out of a mouth that wasn’t mine, and hang in the air between me and the patient as though spoken by someone else.” And Volpe reports, “even now, a year later . . . I feel a physical weight on my chest, and sometimes it’s hard to breath.” The toll of moral distress is clear and personal. Many of these

Narrative Inquiry in Bioethics Volume 3.2 (2013) 147–151 © 2013 by The Johns Hopkins University Press

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narratives bring us into visceral contact with what it is like to feel trapped, constrained, pressured, or lost in a situation that acutely challenges one’s ability to sustain moral integrity despite one’s best efforts to do what is right. At the same time, looking closely at their specifics reveals intriguing and, I think, morally significant differences in the kinds of moral distress they explore. My aim in these brief comments is to highlight and reflect on one of these differences, namely, between cases in which moral distress does, and does not, center around the experience of moral disempowerment.

2. In thinking about this, it is helpful to start with two narratives, both of which—though each in a unique way—explore experiences of moral distress that are not centered in experiences of moral disempowerment—those of Pniewski and Hallett. In her narrative, Pniewski recounts her experience being sent alone to the large, filthy, somewhat remote home of a dying man who has already established a track record of bigoted, demeaning treatment of Pniewski’s colleagues. Pneiwski struggles not to succumb to disgust and aversion as she weathers his verbal abuse and taunting insults. While her education and upbringing have led her to believe that, “each person deserves to be respected and cared for as an individual, despite who they may be,” she desires, “with every fiber of her being . . . to run out of that house screaming.” Pniewski’s story is about learning to “retain composure,” and about the moving connection she and her patient ultimately forge as she earns his trust, helps him reconnect with his estranged children, and he in turn begins to share his complicated personal history with her. Sometimes, as in Pniewski’s case, challenges to moral integrity are largely internal ones (experiences of conflict, confusion, emotional arousal or detachment that threaten to diminish our capacity for moral responsiveness). The distress Pniewski describes is triggered by the effort she must exert to stay with her own moral center and do the work of nursing she feels called to do. Because caring for this dying man requires forging a connection

to him, self-discipline, firm boundaries, and clear self–possession are necessary, but not enough; she needs also to be open, curious, and generous. This is no small feat. Pniewski’s story speaks to the moral resilience, mindfulness, and creativity needed to summon and sustain compassionate connection to patients one finds difficult. In Hallett’s narrative, sources of moral distress derive from inner conflict and confusion, but these are triggered in key ways by inter–personal and institutional elements of the broader moral situation she is in. Hallett is asked in her role as clinical psychologist to assess the psychological condition of a convicted man, whose competence is being question because he is (after two decades on death row) requesting the death penalty. Judging this man to be fully competent, Hallett also recognizes that her verdict of competency will likely clear the path to his “imminent death” by execution. Hallett is deeply opposed to the death penalty and profoundly torn. Amidst the cacophony of heated public debate and the barrage of arguments and considerations she hears from clergy, judges, family, and the convicted man himself, she “struggle[s] to find [her] own center.” At times confused and unable to find words or “answer [her] own questions,” she seeks to navigate a situation in which the consequences of her best judgment will likely run counter to her moral convictions, knowing she has no power to change this fact: “The law had been made, the sentence given and the wheels of the legal machine were turning. I was not even a cog—I was part of the rocky road underneath the machine. My voice would not change the outcome, whether I whispered, shouted or was silent.” Ultimately, Hallett finds peace in her belief that she must, above all, respect the autonomy of the convict: “I did not support the death penalty, but I did support the ability of an individual to make a conscious choice . . . even [one] in favor of his own death (Hallett).” This is not a decision free of moral cost, but it is one she makes without lingering guilt, shame, or moral despair. She has, she says, “learn[ed] to tread water in ambiguity and ambivalence.” Pneiwski and Hallett share stories with high moral stakes and poignant, difficult moral

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challenges, but neither, in the end, emerges feeling morally compromised. Nor do they experience themselves as trapped or constrained in situations threatening their integrity. They struggle, but they retain a sense of effective moral agency. In this sense, the kind of moral distress they experience stands in stark contrast to the second kind I want to consider.

3. In the second kind of case, moral distress consists in more than anxiety or concern about one’s capacity to meet challenges to one’s integrity; it consists in the sense that one has failed to meet these challenges, that one is failing to live in a way that is true to (some of) one’s fundamental convictions and values. When this sense of moral failure is further compounded by feelings of frustration or impotence, of being constrained or impeded in one’s ability to be moral, one experiences moral disempowerment. Many of the narratives collected here powerfully explore the experience of moral disempowerment. For the sake of brevity, I will focus here mostly on McCammon’s narrative as illustrative of this kind of moral distress. McCammon eloquently describes the “helplessness and outrage . . . immense, and frightening in its unfamiliarity” she feels learning from one of her uninsured patients that the institution in which she practices surgical oncology has, in the wake of a damaging storm, informed all uninsured patients that their care was “terminated.” She questions this decision, moving up the “increasingly reticent and then elusive” line of authority, only to discover she is powerless to combat it. “While this decision was made by the administration,” she writes, “its enactment was delegated to the physicians. Thus, not only were the physicians not involved in the decision to terminate their patients, they shouldered the burden of telling their patients that they would no longer be treated” (McCammon). Left carrying out the practical implications of a decision she views as immoral and unacceptable in the first place, McCammon often bears the brunt of her patients’ terror, grief, and rage. She also finds

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herself grappling with new conflicts: How, in this situation, should she best direct her energies and efforts? Trained as an oncologist, she is now too often “holding [her patients’] hands,” helping with nutrition and pain management rather than treating their cancers. Is she doing enough with her training and expertise? Could she be doing more good treating the cancers of her many insured patients and meanwhile attempting to fight for justice more broadly? “There are so many grander ideals for improving the health of our people,” she writes. “Should I not be pouring my energy into those? Fighting for reform . . . on a national level . . . advocating tirelessly for resources . . . these hold the promise of greater good for greater numbers. But I don’t do those things. I hold hands and weep with patients and go home so very tired. I feel guilty for not taking up arms.” Of course, McCammon could just leave her practice and opt out of the whole troubling situation. But this would amount to abandoning her patients, something she cannot, in good conscience, do. Thus she attempts to reconcile herself to a situation she experience as persistently compromising of her integrity. She locates the moral heart and soul in her work with her patients, even those whose cancer she no longer has resources to treat. McCammon’s story, like those of so many others collected here, is one in which the individual must navigate within a situation she has not designed, confronting choices that are the consequences of others’ decisions, or of institutional policies and practices she has no authority change. She is expected to submit and obey, to acquiesce to, and in many cases carry out, the decisions of others even as they are at odds with her own deep moral convictions and values. When these decisions lead to actions or protocols she believes are wrong, this submission is humiliating and enraging, even a form of moral subordination—the price she must pay to remain connected to her patients. McCammon’s like many of those writing, works within relational and institutional contexts configured by stark asymmetries of power, authority, and vulnerability. Her efforts to question, protest, and bring change lack the authority to be effective.

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In many narratives, moral disempowerment is connected to the experience of silencing and voicelessness. Murray writes of the “strong wall of silence . . . which prevents professionals from doing what is right—speaking up without fear of retaliation.” Even when fear of retaliation is absent, voicelessness can be a response to others’ devaluation or disregard, their indifference to our please and protests, or their failure to seek our input or to engage our perspective. Describing a troubling case in her hospital, Mack writes of her reaction to her own moral distress: “it best can be described as isolation, although I was active member of the care team to be involved, I felt I was relegated to being a quiet bystander, a technician expected to provide the skills, but not the critical reflection, which I still feel makes us physicians.” The inability to mobilize one’s speech to secure the attention and understanding of others in moments of moral exigency, perplexity, or peril can be humiliating, demeaning, dispiriting, or infuriating. It can lead individuals to feel shame and guilt, despite the pressures and constraints on their agency. Hensle describes obeying her teacher’s sharp commands to remain silent about a morally disturbing act she witnesses: “I finished out my rotation without a peep. But in doing so I feel I betrayed the people in my life who have mental illnesses. I betrayed the belief in human rights, which had led me to healthcare in the first place. And I betrayed the patients who come to that hospital seeking help and compassion and are instead treated like criminals.” Moral distress centered in the experience of moral disempowerment is a double whammy: one experiences oneself as morally compromised and as compromised, too, in being able to overcome or transcend this terrible condition.

4. Though many of the narratives highlight single experiences of moral distress, it is important, too, to acknowledge the dynamic of moral distress as it impacts effective moral agency. Clinical contexts, like life in general, are rife with moral challenges. When triggers of distress are repeated, or when the

experience of integrity failure, moral disempowerment, and constraint goes unresolved, anticipatory anxiety, fear, distrust, and anger can simmer, creating standing vulnerabilities impairing one’s ability to respond constructively to new morally challenging situations. Epstein and Hendric call this the “crescendo effect”: At the conclusion of a [moral] crisis . . . the clinician’s acute moral distress decreases. The painful feelings, however, are not completely eliminated; some moral residue remains, serving as a new base line for moral distress. Over time, as repeated crescendos of moral distress are experienced, moral residue increases gradually — the second crescendo. Such a steady increase in baseline moral residue can create increasingly higher crescendos; new situations evoke stronger reactions as a clinician is reminded of earlier distressing situations (2009, p. 3).

Acknowledging the dynamic nature of moral distress is central to understanding the importance and value of addressing distress constructively, of “providing avenues” by which we can engage it, work with it, and learn from it, and ultimately free ourselves from its debilitating impact.

5. In reflecting on her own experience, McCammon writes, “[T]his is not a story of triumph and renewed strength. Much of what I still feel is resignation and despair.” But she has gone on to become board certified in hospice and palliative care medicine, incorporating this expertise into her surgical practice. “I work with people along the full spectrum of living and dying and suffering and relief,” she writes, “I no longer conceive of my work as an alternation of fertile and fallow, colored by the residual frustration and impotence of “losing” my patients” (McCammon). She says she lives “simply” now, “one (inter) action at a time with the people in front of me. I do what I can and I share regret for what I am unable to do.” McCammon has found a way to direct her specific talents and moral convictions, to do the most she can in a system that continues to radically shortchange uninsured people suffering from cancer. Those she cannot cure, she can still help to

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heal: “I open their airways, and I give them access to nutrition and narcotics, and I grieve the fact that this is their county, their state, their country, their accident of geography.” We see from many of these stories that the experience of moral distress can ultimately be a learning experience, an instigator for reflection and change, both in the individual clinician and in the practice environment. “If there was meaning in my experience,” Nathanson writes, “it was in forcing me to confront what I am and am not willing to compromise, as a human being and a healthcare provider.” Nathanson decides to leave her psychiatric residency program and become a medical writer. Many stories, like hers, include moments of creativity, freedom, and reclamation. Many of the authors find ways to summon courage to to make changes in their careers and their work environments, or to protest and question what they cannot yet succeed in changing. Some seek further training in ethics, or positions of leadership and authority, thereby empowering themselves to effectively address the sources of moral distress they have suffered. These narratives are in many ways a tribute to the resilience of moral agency. At the same time, they convey vividly how uncertainty and conflict can impede our ability to remain open and curious, able to engage in inquiry, reflection, or creative change. When we feel stuck – because we don’t know what to do or how to solve the problem, we can react with anxiety, anger, and fear and this can close down inquiry and imagination, fostering despair rather than hope. When we feel constrained, obstructed, compelled, or trapped, as is often the case in experiences of moral distress, our ability to work constructively can be hampered in ways that further reinforce the experience of constraint, the sense of moral disempowerment. In her book, Moral Repair, Margaret Walker (2006) writes, “It is enormously important that human beings have prodigious resources of imagination, invention, insight, and resistance that can open spaces of possibility and images of agency even under desperate conditions” (p. 64). These compelling narratives make clear the need for morally reparative action, including the creation of

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on-going proactive measures directed to individual skill-building and the development of institutional “space” for reflection, dialogue, and healthy collaboration. Only this will enable us to reclaim the “prodigious resources of imagination, invention, insight, and resistance,” within us. Reclaiming and sustaining effective moral agency in a world that is morally messy also requires us to embrace our vulnerability rather than fearing or denying it, and to acknowledge both the limits of our own control and the realities of our interdependency. Is only then that we can learn to “navigate the gray zones” in our work (Les), to find our moral moorings even in “ambivalence and ambiguity” (Hallett), and approach moral challenges with “more respect and humility, search[ing] for what is reasonable, realizing that perfect and best can lead us astray or . . . cause inadvertent harms” (Mack).

References Epstein, E. G., & Hamric, A. B. (2009). “Moral distress, moral residue, and the crescendo effect,” Journal of Clinical Ethics. 20 (4): 330-342. Walker, M. (2006). Moral repair. Cambridge: Cambridge University Press.

Moral distress and moral disempowerment.

Moral distress can consist in anxiety or concern about one's capacity to meet challenges to one's integrity; it can also consist in the sense that one...
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