What Is—and Could Be—Palliative Care's Role in Humanitarian Crises?
by Larry Beresford
It seems as though humanitarian crises—whether from natural or human-caused disasters; sudden onset catastrophes such as earthquakes; devastating storms or wildfires; warfare, political conflicts, and ethnic violence; mass refugee displacements and relocations; epidemics such as Ebola; or even the deadly worldwide COVID pandemic—are happening more often than ever.
These crises come in many forms, each with its own unique set of challenges. However, one consistent factor is that palliative care often is missing from humanitarian responses. Palliative care professionals, who are experienced at dealing with the personal devastation wrought by serious illness in the lives of their individual patients and families, may wonder what their role can and should be in ensuring that this kind of person-centered care is offered at the frontlines of large-scale disasters and humanitarian crises.
How can they be mobilized and put to work in areas of greatest immediate need? What do they have in particular to contribute in a crisis? And how might that contribution be recognized and welcomed by others in the heat of the moment? Should they teach frontline providers the basics of primary palliative care in a crisis?
A recent illustration of what palliative care can offer and how it might find a home in larger crisis response efforts comes from the COVID pandemic and, in particular, reaction to the first surge of COVID cases and hospitalizations in the New York metropolitan area starting in April 2020. Hospitals were inundated with infected patients at a time when not much was known about the virus or how to manage infections.
Three major healthcare systems, NewYork-Presbyterian/Columbia University Irving Medical Center, Mount Sinai Health System, and NYC Health + Hospitals, each recruited, welcomed, and assigned healthcare professionals, including palliative care specialists, in person and virtually to help with the influx of hospitalized patients.
At NewYork-Presbyterian, among multiple creative models to expand access to palliative care in the crisis, frontline clinicians consulted the palliative care team for debriefings and assistance with palliative care needs, including timely goals-ofcare conversations. As demand for palliative care consultations increased seven-fold, a scalable virtual consultation model staffed by out-of-state palliative care volunteers was implemented.1
At Mount Sinai Medical Center, a palliative care helpline dubbed PATCH-24 was created in response to the surge within the system to supplement and augment the capacity of in-person palliative care teams and support sites that didn’t have such a team. An initial focus on supporting emergency departments quickly evolved from providing only teleconsults with clinicians to including direct virtual conversations with patients and families.2
Exceeding Capacity to Respond
Plans were made in New York and elsewhere—including, more recently, in Los Angeles with its January 2021 COVID surge—for what to do if COVID cases exceeded the system’s capacity to respond, whether that means a lack of beds or equipment like ventilators or a dearth of personal protective equipment or human resources, requiring difficult allocation decisions that many feel should not be made by frontline clinicians.
The most forward-looking health systems have devised protocols for assigning ethics teams or “triage officers” at arm’s length from frontline care to apply the criteria for such decision making—should it become necessary. Although that approach has not been necessary in US hospitals with COVID, palliative care can contribute to thisplanning and discussion.
Elizabeth Dzeng, MD PhD MPH, medical sociologist, palliative care physician, and assistant professor of medicine at University of California, San Francisco, says there’s a tremendous role for palliative care in disasters. “We want it to be much more recognized, but it’s not the first thing people think of in a crisis.”
Dzeng emphasized that although palliative care shouldn’t be used as a strategy for rationing care, in many situations, regardless of whether they happen during crisis, doctors may decide a patient has a low likelihood of survival. “That’s where specialist palliative care could be beneficial, modeling and helping healthcare workers have conversations with patients and families.”
She recently conducted qualitative interviews with intensive care unit (ICU) physicians and nurses who volunteered to help in person during the first COVID surge in New York City. These clinicians worked alongside others who were redeployed to medical roles for which they were not trained, such as providing critical care for patients with acute respiratory distress syndrome resulting from COVID-19.
Dzeng documented a great deal of moral distress—which can be a path to burnout—among those clinicians from the experience. Moral distress can occur when a professional feels confident in the ethically correct action to take but feels powerless to take that action because of institutional or hierarchical constraints. Research on moral distress among nurses has identified that the sources of moral distress are many and varied, and that the experience can lead some to leave their jobs or the profession altogether. Experts fear this could turn into another kind of epidemic of lost professionals in the wake of the pandemic.
In a summary of their findings published in the San Francisco Chronicle,3 Dzeng and colleague Lingsheng Li, MD, noted, “These were narratives of profound grief and suffering at hospitals that were described as ‘war zones.’ Many doctors take on guilt and self-blame for their futile efforts in the face of the virus that has already affected millions. One said, ‘I blamed myself so intensely for the decisions I’d made in trying to take care of her. I caused her death.’”
The Global Community Responds
One could ask whether clinicians trained and experienced in palliative care are better equipped for the more dire crisis situations where providers are largely helpless to prevent outcomes such as death. Or would they be equally prone to the same kinds of frustrations, moral distress, and emotional pain described by Dzeng and Li?
These questions may seem far removed from the normal palliative care professional’s daily work life, but there is a large and growing global community that is paying more attention to them. This community includes PalCHASE, the Palliative Care in Humanitarian Aid Situations and Emergencies Network, an international consortium formed in 2016. The overarching goal of PalCHASE is to help meet the palliative and end-of-life needs of people affected by humanitarian disasters and mass casualty incidents. This is achieved through advocacy, guideline development, promotion to raise awareness and dispel misconceptions, and professional training.
Joan Marston, based in South Africa, is PalCHASE’s founder and a member of its executive team. She says the network grew out of watching the huge influx of refugees fleeing wartorn Syria. “Because I belong to a global palliative care group, I put out a question to the group: What palliative care is happening in humanitarian crises? The answer was: very little, or it’s not something we’ve thought about,” she said. “How do we find the place for palliative care? How do we integrate it into humanitarian actions that are largely focused on saving lives? It’s not just end-of-life care but also addresses health-related suffering more broadly, with a focus on body, mind, and spirit.”
In situations of massive suffering, such as sudden crises like floods or fires, many people may be dying. Others may have pre-existing lifethreatening illnesses. “There’s also a huge amount of grief and loss for those who’ve already lost so much,” Marston said. “In the bigger picture of humanitarian crises, it’s not so much that palliative care is a stand-alone service coming in and trying to take over but rather working alongside, able to provide help and support. If it can be humble enough to see itself as part of a larger network or response, it can contribute the principles of palliative care.”
This idea is not without support in the global healthcare community. The World Health Organization (WHO) has a guideline document, “Integrating Palliative Care and Symptom Relief into the Response to Humanitarian Emergencies and Crises,” which defines an “Essential Package of Palliative Care for Humanitarian Emergencies and Crises” that outlines interventions, medicines, equipment, human resources, and social supports for alleviating pain and suffering.
The Sphere Project of Geneva, Switzerland, publishes the Sphere Handbook: Humanitarian Charter and Minimum Standards of Humanitarian Response. McMasters University in Montreal is home to the Humanitarian Health Ethics Research Group, a multidisciplinary team of researchers and practitioners formed in 2009, which has produced a number of relevant documents, including evidence-based research addressing, for example, the moral experiences of health professionals caring for patients who are dying or likely to die in a humanitarian crisis.4
Experience on the Frontline
There also is now A Field Manual for Palliative Care in Humanitarian Crises, published in November 2019 by Oxford University Press. This manual, available online, primarily is intended for clinicians working in the field. It includes chapters on such issues as floodwaters and skin infections in crisis areas as well as provider stress and care of dying patients. Its co-editors are Elisha Waldman, MD, division head for palliative care at Ann & Robert H. Lurie Children’s Hospital of Chicago, and Marcia Glass, MD, program director of the Hospice and Palliative Medicine Fellowship at Tulane University in New Orleans.
Both have experience at the frontlines of humanitarian crises, Waldman while working at Jerusalem’s Hadassah Medical Center, as well as in Gambia, and Glass with Doctors without Borders (also known as Medicins sans Frontieres [MSF]) in Liberia and Colombia. More recently, she volunteered during the COVID surge at the Navajo Nation in Arizona, which has some of America’s highest per-capita infection rates.
“I was recently on the phone with my colleagues in Navajo Nation. That’s another powerful example of an ongoing humanitarian crisis,” Glass said. “They don’t always have electricity. They don’t have ventilators; they can’t intubate patients. It’s really bad.” She has gone to the Navajo Nation in person and recently sent one of her palliative care fellows for a field work placement—after encouraging her to read chapters 16 and 17 of the manual on provider and family existential stress.
Not many palliative care professionals are trained or qualified to just “parachute” into humanitarian crises. But Glass’s fellowship program regularly incorporates humanitarian crisis fieldwork into the curriculum. The complementary fellowship curriculum is structured around trauma-informed care and features lectures on such topics as how to talk to children during crises and palliative care during humanitarian crises.
In the wake of 2005’s Hurricane Katrina and the slow response from federal disaster management authorities, some healthcare workers stranded with inadequate supplies in flooded hospitals with their patients faced retroactive questioning of crisis decisions with life-and-death importance. “I was a resident when Hurricane Katrina hit New Orleans,” Glass said. “Later, when I thought back on that horrible situation, I thought, if one of my palliative fellows had been stationed at Memorial Medical Center, they really could have helped with triage. In my hospital in New Orleans during COVID, anybody who had experience with humanitarian work or MSF was suddenly incredibly valuable.”
Sonia Malhotra, MD MS, director of the palliative medicine service at University Medical Center in New Orleans, wasn’t on the ground when Katrina wreaked unprecedented devastation on the Crescent City, although she did see the residual damage in 2008 when she started her med-peds residency in a converted department store. “Some of the best colleagues I’ve known had experience on the frontlines of Katrina. They had to think quickly outside of the box and come up with innovative clinical solutions,” she said.
By the second week of March 2020, Malhotra was starting to see more COVID patients on the job. “We rounded daily with ICU, hospitalist, and emergency department colleagues. We took on daily phone calls to the families of patients and utilized a text messaging system for updating them. Our palliative care inpatient service had to be on the clock 7 days a week. We recruited three nurses from other departments and trained a team of psychiatry residents to help out with goals-of-care conversations,” she said. In-person clinic visits stopped, and all clinic visits were by telephone or video.
“We have stepped in to provide a level of support for our team and our colleagues. So many people were dying. Even for the palliative care team, the amount of deaths was surreal,” she added. “When I think back to March and April, we knew so little that it caused everybody to have anxiety. I had to be innovative in my clinical and psychosocial approaches to care. We check in with each other at morning and afternoon huddles, and every Friday we talk about the peaks and valleys of our week.”
Trauma and Posttraumatic Stress Disorder
Based on her experience in humanitarian crisis situations, Glass said the signs of being overwhelmed by the trauma of a humanitarian crisis include all the symptoms of posttraumatic stress disorder, such as recurrent thoughts, a tendency toward substance abuse or suicidal thoughts, hypervigilance, nightmares, or anger—“The kinds of things you see in veterans of warfare,” she said. These are also the pathways to burnout and to emotional suffering for the clinician.
“At that point, you need to lose the word resilience,” Waldman said. “We’re talking about situations that exceed human capacity. We won’t know which of our medical residents will be having recurring nightmares 5 years from now. Situations under extreme duress challenge us to deliver these skills. But it’s still possible, still essential,” he said.
“Prior to COVID, we were starting to develop connections with a network of people around the world. Clearly, people globally are thinking about these things,” he said. Other examples of palliative care’s encounter with disasters and crises include Ebola outbreaks in Africa, where Shepherd’s Hospice in Freetown, Sierra Leone, a local community-based service formed in 2005, found itself playing a major role in affected communities.
In a November 17, 2014, release posted on ehospice.com at the height of the crisis, the hospice’s executive director, Gabriel Madiye, noted, “After the initial shock and fear of Ebola, we—the local health service providers—have realized that the answer to this epidemic now largely depends on our resolve. We at The Shepherd’s Hospice are now responding to Ebola after benefiting from training by WHO and other partners to develop competencies in Ebola care and infection control.”
“Neglected Suffering,” a March 2018 report by Megan Doherty and Farzana Khan,5 describes the unmet need for palliative care in Cox’s Bazaar in Bangladesh, now home to the world’s largest refugee settlement for 900,000 Rohingya refugees who fled genocide in neighboring Myanmar. A commendable health response has been organized.
In November 2017, a palliative care rapid situational analysis was conducted among the refugees. Two-thirds of respondents said they couldn’t get medication they needed, and palliative care treatment was limited—which is a common concern in many countries around the world where access to opioid analgesics is constrained. More recently, an innovative virtual education program called Project ECHO: Introductory Palliative Care for Humanitarian Health Care Providers has offered seven interactive virtual classes for 65 frontline healthcare professionals in the Bangladesh camp.6
Ultimately, the challenge of humanitarian crises “is learning how to see the other—the person in front of you—and to elicit their hopes and fears, their goals and values,” Waldman said. “Whether in the field in a natural disaster or in Chicago during the COVID surge, we are the people who live with uncertainty—who help our patients live with uncertainty. That’s a day in the life of palliative care. It just requires more agility in a crisis.”
- Nagagawa S, Berlin A, Widera E, Periyakoil VS, Smith AK, Blinderman CD. Pandemic palliative care consultations spanning state and institutional boundaries. J Am Geriatr Soc. 2020;68(8):1683–1865.
- Ankuda CK, Woodrell CD, Meier DE, Morrison RS, Chai E. A beacon for dark times: palliative care support during the coronavirus pandemic. NEJM Catal. 2020. https://catalyst.nejm.org/doi/full/10.1056/CAT.20.0204. Accessed January 2021.
- Li L, Dzeng E. Health care workers' plea: you can save more lives than we can. San Francisco Chronicle. December 2, 2020. https://www.sfchronicle.com/opinion/openforum/article/Health-care-workers-plea-You-can-save-more-15768364.php. Accessed January 2021.
- Hunt M, Chénier A, Bezanson K, et al. Moral experiences of humanitarian health professionals caring for patients who are dying or likely to die in a humanitarian crisis. Int J Humanitarian Action. 2018;3(12). https://doi.org/10.1186/s41018-018-0040-9
- Doherty M, Khan F. Neglected Suffering: The Unmet Need for Palliative Care in Cox's Bazaar. London: World Child Cancer; 2018. https://www.humanitarianresponse.info/sites/www.humanitarianresponse.info/files/documents/files/neglected_suffering.pdf.
- Azad TB, Doherty M. Palliative care training for humanitarian healthcare providers in Rohingya refugees crisis using online classes. eHospice website. https://ehospice.com/international_posts/palliative-care-for-rohingya-refugees-using-online-classes. Published November 11, 2020. Accessed January 2021.
Larry Beresford is a medical journalist in Oakland, CA,with a strong interest in hospice and palliative care.
Read the next article or go to the table of contents.