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Moral Distress, Palliative Care, and the Road to Resilience

Larry Beresford

The COVID-19 pandemic has sorely challenged healthcare professionals, particularly in areas where case numbers surged and challenged capacity. For some, the sheer caseload of severely ill patients, having to witness so many deaths, and their own personal risk of exposure to the virus have caused physical and emotional depletion, exhaustion, suffering, and compassion fatigue—milestones on the road to burnout.

For many, some of this distress may seem like it could or should have been avoided with different systemic, societal, and personal responses, which adds a moral element to the pandemic's mix of case overload, stress, and burnout. Experienced palliative care professionals may have felt that their skills, strategies, and overall orientation to care would have helped them in coping with the pandemic's humanitarian crisis (see AAHPM Quarterly, Spring 2021), but no one was immune to its impact.

The term moral distress describes a type of occupational distress where committed professionals have witnessed or even participated in acts that violated their own sense of right and wrong, deeply held values, and codes of professional ethics. In its earliest days, the term was applied to nurses in a 1984 book by Andrew Jameton,1 though its effects also heavily impact physicians and other clinicians.

The broadness of the concept has resulted in many overlapping ideas around the issues of moral distress, said Betty Ferrell, PhD MSN, director of the division of nursing research and education at City of Hope National Medical Center in Duarte, CA. In many cases, however, "it comes down to finding yourself participating in [something] you are morally opposed to," she said.

This kind of distress has been observed in the care of patients with life-threatening illnesses, for example in intensive care units (ICUs) or in cancer treatment, particularly in cases when a clinician may feel the care they are giving is futile or burdensome. It can be experienced when patients at the end of life are not given accurate information about their prognosis or treatment choices or when families insist on treatments that the professional considers harmful or inconsistent with what the patient might have wanted. Increasing complexity of medical treatments, some of limited benefit; dissonance between what clinicians can do and what they should do; and external pressures, such as from government agencies, payers, and hospitals' throughput demands, also have driven moral distress and injury.

For example, during the pandemic, many health facilities adopted protocols indicating that hospitalized patients were not allowed to have visitors, even when they were dying, to prevent further transmission of the virus to patients, visitors, or staff—but these restrictions often clashed with the fundamental ideologies palliative care and hospice clinicians have worked to support throughout their careers.

"We have fought so hard for the principles of palliative care, such as not letting our patients die alone, supporting the family's experience, and providing respectful care at the end of life. So, it's been hard to see people dying without their family present," Ferrell said. For many, the act of refusing to allow the patients' family to be present runs contrary to their own ethics. "That's moral distress. You may be doing things for eminently sensible reasons, but still, it's painful to see. My colleagues have told me that their greatest distress was watching the distress of their colleagues, such as when they had to hold up a smartphone so that the family could say goodbye via the FaceTime app," she said.

Continuum of Moral Suffering

Moral distress can be seen as belonging to a continuum of moral suffering, said Cynda Rushton, PhD RN, professor of nursing and pediatrics and Bunting Professor of Clinical Ethics at Johns Hopkins University. Rushton has studied moral suffering for many years, and recently edited a book on the topic, Moral Resilience: Transforming Moral Suffering in Healthcare.2 She sees this distress in a broader context of the varieties of anguish professionals experience in response to moral harms.

Some may consider moral distress to be a reflection of some misuse of power, such as pushing professionals to provide care that seems inappropriate or suboptimal. But there may be moral gray zones where responsible professionals disagree.

"We have to accurately diagnose the problem and recognize that this is not the same as burnout," Rushton explained; rather, in the case of moral distress, there is an ethical conflict or dilemma that is causing the distress. "We begin to feel something's not right. That concern can't be relieved. We know what we think we should do, but there are real constraints in the way."

When moral distress becomes severe, unmitigated, unrelenting, and accompanied by feelings of betrayal by our leaders, by the government, by employers, or by society, what can result is moral injury, a term first coined in a military context to describe the aftermath of prolonged or repeated exposure to triggers of moral distress. Moral harms, moral suffering, and moral depletion all involve some kind of moral adversity, Rushton said. And moral resilience—the ability to preserve or restore integrity in response to moral adversity—is a protective resource that could ease professionals' suffering and perhaps forestall serious burnout, PTSD, or decisions to leave the field.

Quantifiable measures such as the Moral Distress Scale-Revised3 have documented high levels of moral distress in nurses and other professionals on a regular basis—but they don't capture the full range of distress experienced in the pandemic and the resulting moral injuries potentially suffered by clinicians. "When we pause, we begin to recognize what has happened," Rushton said of such injuries. "People take a breath and think, 'Oh, my God, what have I participated in? How will I make sense of this?' There's a kind of unraveling of our moral integrity: 'Who am I now?' We feel guilt and shame and regret, even though we could not have met those needs," she said. For others, there is guilt because they didn't face the throes of the COVID surges or were not at the front lines of the pandemic when colleagues were.

"This is a chronic crisis. It's different than a natural disaster, which typically is time limited," Rushton said. "Initially it was all hands on deck. Now we're trying to recalibrate."

'Skeletons of Guilt and Regret'

In a recent perspective piece in the New England Journal of Medicine, Richard Leiter, MD, palliative care physician at Dana-Farber Cancer Institute in Boston, described how he led a palliative care team embedded in the ICU from March to June of last year, describing the many difficult decisions made when clinicians everywhere still were learning about COVID-19.4 After feeling he had reached the other side, as the surge abated and more information became available, he described being wholly unprepared for what he felt next: a growing sense of anger, resentment, arousal, pain, isolation, nightmares—"skeletons of guilt and regret," he wrote for the decisions that may not have been "right" and the ways he was unable to honor his palliative care training.

Simon Tavabie, MRCP, a hospice and palliative care doctor working at a major hospital in London, UK, said his colleagues worry about many of the same issues as their American counterparts, including whether there will be enough ICU beds and staffing for the surges, as well as practical things like access to medications like morphine for managing breathlessness. Tavabie is familiar with comparisons of COVID to wartime. "There are a lot of similarities, but doctors and nurses are not soldiers. We're not trained for combat," he said.

"When seeing numbers of patients dying outside of your comfort zone, some people just put on their helmets and march back to the trenches, while others have to struggle to go back to work. They come home after a long day, with no way to unload their feelings, knowing that the next morning they'll just have to do it again," Tavabie said.

One of the changes in his palliative care work was how much more time he has spent supporting other professionals in the hospital during the pandemic. "That's something we are fairly good at. The way we approach each other is similar to how we approach our patients," he said. For himself, Tavabie says there were a few occasions where he felt at the breaking point. "It wasn't around a particular case so much as ongoing pressure, the weight of cases—and fear of what was coming next."

Perceived Self Efficacy

However, "it's important to emphasize that the difficult clinical situations seen in palliative care are not the inherent cause of moral distress," said Billy Rosa, PhD MBE ACHPN FAANP FAAN, chief research fellow in the department of psychiatry and behavioral sciences at Memorial Sloan Kettering Cancer Center in New York City and a palliative care nurse practitioner. "We routinely see pain, suffering, and very complicated situations. We bear witness. But that suffering is now arising in situations that are at odds with our individual moral compasses. We're not able to do what feels right and we don't have the resources we need. We feel that what we're doing isn't enough," Rosa said.

"We came into this field to help meet the goals of palliative care." That includes alleviating suffering; establishing relationships with patients; and understanding their needs, preferences, and values, he said. "The pandemic has maxed out the resources we need to uphold our standards, and that's where moral distress occurs."

It may have been that the visitation restrictions were a good choice to prevent further spread of the virus—at least based on the information available at the time. But that doesn't necessarily help frontline providers, he noted. "I may theoretically be able to stand back and say: 'I understand why.' But that has little to do with the actual experience of the clinician who's unable to respond to the patient's needs in the moment."

Rosa is studying the experiences of interdisciplinary palliative care providers who addressed acute care oncology patients' needs during the initial surge in New York, delivering care using telehealth platforms. His in-depth, qualitative interviews with these providers weren't about moral distress specifically but explored his sources' sense of moral and self-efficacy. "My initial results showed that if providers believed themselves to be ineffective in their work, it was reflected in their distress," he said.

One clinician told Rosa about being on the phone from her home with the daughter of a patient dying in the hospital from COVID. "The daughter is alone with her mother and doesn't know what she's looking at. She says, 'How am I going to know when my mother is dead? She looks very still,'" he said. "My colleague realizes that the patient has just died, and she has to convey that information over the phone." She then had to hang up and was at home, alone, with no way to leave work at work, Rosa continued. "She's in deep grief and she's all alone. There's your moral suffering."

Digging Deeper

Elizabeth Burpee, MD, a frontline physician and researcher with Four Seasons and a hospice and palliative care provider based in Flat Rock, NC, leads a video conferencing education and mentoring program modeled on the University of New Mexico's Project ECHO offering resilience-promoting interventions via a Zoom platform with palliative care clinicians, both in North Carolina and nationally.

"There has been so much said about burnout in recent years. We know we're losing people in all the medical professions. But we have learned that burnout is too broad of a term. We need to dig deeper into causes," she said, which may include the ways moral distress may impact overall clinician distress and burnout. Burpee's work aims to bring the subject of resilience in the face of COVID to the conversation to reduce burnout.

Another concrete service is live debriefing for participants, which she describes as a facilitated session for people who have something in common, "a place to give voice to the difficult work they do and share that with others," she said.

Some commentators recently have questioned the growing emphasis on resilience for healthcare workers, saying it suggests to the professional: you fix it. "The system we have says it's up to you to be okay. We've seen that, and we know it doesn't work," Burpee said. "We know doctors and nurses are burning out, and a certain percentage of them leave the field. We can say the system is not working, and we can acknowledge that burnout impacts patient care."

What's needed, she said, are individual solutions, team solutions, and large-scale institutional changes. "We know we'll have another pandemic—or something else comparable. This is the 40th anniversary of the AIDS epidemic, and we know some people never recovered from that."

Although these focus on burnout, such solutions also are needed for moral distress, Rushton said: "We have to do both—help individual clinicians to harness their inner resources to meet these challenges without degrading their health or integrity and change the system." She calls resilience work a life preserver and a pathway for professionals to reorient themselves and pay attention to what's happening to them to reach a sense of wholeness in their work.

How to Encourage Resilience

Johns Hopkins Hospital provides moral resilience rounds, creating spaces for professionals to talk about what the ethical challenges and moral residue they are carrying in reflective dialogue sessions, Rushton said. "Organizations need to invest in these things—along with a robust ethics infrastructure to identify and address ethical concerns."

Other approaches tried in various settings include building a daily mental practice, such as with mindfulness meditation; finding a "buddy"—someone to lean on and share advice, support, and empathy with; learning to recognize signals of distress and to self-regulate; and having ready access to dedicated counselors.

"Let's acknowledge that we are still in a crisis—still in the pandemic," Rosa said. "Our teams had weekly debriefings and invited open discourse. But much of this has stopped. Why? We're still in crisis. People are still under pressure in their working and personal lives," he observed. "Let's grieve together. Let's talk about what happened and what is happening, and then move on to how we can strengthen the well-being of our workforce."

Rushton encourages Academy members to acknowledge out loud that the suffering of moral distress is real. "[These clinicians] are incredibly resilient people; otherwise they wouldn't be on the front line of the pandemic. But the situations and demands that were placed on them have exceeded their resources. That's not their fault," she said. "This is the time for us to heal and stand together in solidarity, thinking about the emotional and physical costs of the pandemic and becoming involved in creating solutions so we're not in this situation again. This is not one and done. The injury that has occurred with COVID will have long-lasting consequences. We need to commit resources to help our frontline workforce, which is so exhausted. We have to learn something from this pandemic and invest in new models of care—including how to care for those who care for others."

According to Burpee, ultimately, the larger healthcare system will need to take a close look at some longstanding issues, which came to a head in the pandemic. "Healthcare for profit, just in itself, leaves people in moral distress," she said. "When patients are treated differently because of their poverty or lack of insurance, when homeless patients are discharged to the bus stop, that is not amenable to supporting providers in exploring their moral distress.

"One thing that helps me get through distressing events is to try to remember why I came into this field in the first place—remembering my sense of purpose," she said. "If my job is not serving that purpose, maybe I need to tweak the job or go elsewhere. For me, working on issues of equity, diversity, and inclusiveness—training other providers how to better serve the underserved—and how to change our healthcare system, that's helping me to see my place."

Larry Beresford is a medical journalist in Oakland, CA, with a strong interest in hospice and palliative care.

Resources

References

  1. Jameton A. Nursing Practice: The Ethical Issues. Englewood Cliffs, NJ: Prentice-Hall; 1984.
  2. Rushton C, ed. Moral Resilience: Transforming Moral Suffering in Healthcare. New York, NY: Oxford University Press; 2018.
  3. Hamric AB, et al. Development and testing of an instrument to measure moral distress in healthcare professionals. AJOB Prim Res. 2012;3(2):1–9.
  4. Leiter RE. Reentry. N Engl J Med. 2020;384:e141.

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