Moral experiences of humanitarian health professionals caring for patients who are dying or likely to die in a humanitarian crisis

Ethics

This study was reviewed and approved by the Hamilton Integrated Research Ethics Board at McMaster University, and the McGill Faculty of Medicine’s Institutional Review Board. All participants provided written informed consent to participate in the study.

Recruitment

We recruited participants using four approaches. First, we distributed information about the study on social media (via our research group’s Twitter and Facebook accounts). Second, we shared information within our professional networks which resulted in the recruitment of 11 participants. Third, at the end of the survey that was conducted by our research team as part of the broader project (see Elrha 2017), we invited survey respondents to indicate their interest in also participating in an interview. Nine participants were recruited through the survey. Finally, we recruited three participants using snowball sampling, asking interviewees to suggest others who might be interested and eligible to participate in the study. Throughout this process, we attempted to recruit a diverse group of participants, including men and women, and individuals affiliated with different organizations, coming from different regions of the world, and with experience working in different humanitarian settings and in different capacities.

Participants

This paper reports on the analysis of interviews with 23 health professionals (16 physicians, 6 nurses, and one physical therapist), 11 of whom had also worked as policy-makers with a humanitarian organization. In this component of the study, we had also interviewed a non-clinician policy-maker but that interview is not included in the analysis presented here due to our focus on experiences of care provision. The 23 participants were affiliated with 18 different organizations and included 11 men and 12 women. Most of the participants had worked with larger international organizations based in Europe or North America. Our purposive sampling was limited in that participants included more physicians (16) than other health professionals (7) and more individuals from high- (19) than low- or middle-income countries (LMICs) (4).

Interviews

Interviews were conducted between November 2016 and May 2017, in English or French according to the preference of the participant, and followed an interview guide. We created two versions of the interview guide (one for participants who had experience only as clinicians, and one for participants who also had experience as a policy-maker), and each was refined based on feedback from experienced humanitarian health professionals and policy-makers, and persons with expertise in palliative care. All interviews were conducted by Skype or telephone due to the geographic dispersion of the participants. Interviews ranged from 49 to 92 min in duration (average 65 min).

Analysis

We initiated the analysis of the interviews as transcripts became available. Inductive coding was done by two team members and organized using NVivo software. There were separate coders for the policy-maker (GK) and health professional (AC) interviews. A team member (MH) independently coded sections of four transcripts (two for policy-makers and two for health professionals), and three team members (KB, CB and EN) independently coded one policy-maker interview. The provisional codebook was refined through discussion with the whole team and through comparison of coded transcripts. An analytic structure related to moral experience was then developed by three team members (MH, KB, and AC) by repeated and close reading of the transcripts, use of visual matrices and concept maps, and discussion. Once an initial analytic structure was established, a team member (MH) reread all transcripts in light of this emerging analysis to test its consistency and comprehensiveness. The analytic structure was then revised through team discussion.

Acting to ease suffering

Our participants viewed acting to ease suffering as an integral component of good care for all patients in humanitarian settings, but especially important for individuals who are dying or likely to die. They also described how, due to various features of wars, disasters, or epidemics, this dimension of care may be neglected or eclipsed by an overwhelming concern for saving lives and stewarding limited resources. As a result, and illustrated in many of the narratives recounted by participants, suffering is too often insufficiently addressed, even more so for people who are dying. Nonetheless, when curative care was unavailable or inappropriate, participants argued that palliative care should be provided and that addressing symptoms and relieving pain was an obligation of humanitarian health professionals, and that not doing so represented an injustice. A physician involved in developing humanitarian palliative care guidelines argued strongly for the importance of alleviating suffering, since “not giving palliative care and pain treatment is exactly like non-assistance to persons in danger or like accepting torture. Because some pains are like torture” (P1). While making these assertions about the importance of alleviating suffering, participants consistently expressed that lifesaving was the primary focus of humanitarian healthcare. Generally, they viewed alleviation of suffering, including for dying patients, as something that was compatible with and complementary to this focus.

Several linked this claim to the mandate of humanitarian action, since “a humanitarian organization…[has] a vocation of caring for the most fragile people in the world” (P4). Given the extreme vulnerability of individuals who are dying, addressing their suffering was described as inherent to the vision of humanitarian action. A physician involved in training and policy-making at an international NGO took a historical perspective, stating that palliation was part of the “DNA” (P10) of humanitarianism as it was central to the founding of the Red Cross movement through the actions of Henri Dunant at the Battle of Solferino in 1859. This aligns with the ideas expressed by participants who emphasized that efforts to alleviate suffering were consistent with, and even amounted to a reclaiming of, humanitarian values. In this sense, these participants felt that humanitarians fall short of their ideals and “miss the mark” (P17) if they do not address suffering, especially of dying patients.

Highlighted actions to alleviate suffering included not only providing analgesics but also providing water, putting up a sun shade, and having someone stay with grievously injured patients who were triaged to not receive lifesaving care. Failure to engage in such acts, she felt, would represent humanitarians failing to live up to their values.

Along with mass casualty triage situations, care provision in disease outbreaks was also discussed by many participants as a context where attention to suffering was extremely challenging, yet necessary. While a few stories were related to outbreaks of cholera or other diseases, most were told about the 2014–15 Ebola virus disease outbreak in West Africa to which seven of the participants had responded. In this setting, curative options were not available. A nurse reported, “when I started we had like a 70% mortality rate, so basically all we were doing was palliative care, I mean we were just making people comfortable…at the end of their lives” (P11).

Attention to suffering was closely related to concern for upholding the dignity of dying patients, and the two goals were often discussed by participants as intertwined. For example, when replying in the affirmative that providing palliative care should be an obligation of humanitarian organizations in emergency situations, a physician linked suffering, preserving human identity, and dignified death: “if anybody is dying, they should die as a human and not be left to suffer” and “Where there’s an emergency and anybody dies, you should die in dignity” (P5). In the following section, we foreground how participants discussed efforts to uphold and preserve human dignity.

Upholding dignity

Participants consistently emphasized the need for humanitarian health professionals to uphold the dignity of dying patients. The importance of doing so was described as stemming from a recognition of, and response to, dying individuals’ humanity and as an act of respect and compassion. In this light, a physician expressed that humanitarian healthcare required “strong people with strong ethics, but also with strong commitment to value and to respect the dignity of people and others” (P10). Another physician expressed that “even if a patient does not have curative solutions”, he or she “is still a human being” and requires “decent care for dying” (P14).

Participants described many actions as dignity promoting, one in particular being human touch. A physician reported working in an Ebola Treatment Center where the team placed a “huge focus on sort of attempting to focus on dignity” including ensuring you can “safely touch a person and hold a person and clean a person, you know, when they soil themselves and so forth” (P3). She expressed that in an epidemic, it was critical to see patients as human beings, not just as potential transmitters of disease. Another participant, a nurse, described that even with 50 patients who still needed to be seen by her team, it was important to demonstrate compassion and “hold a child, or to sit and hold someone’s hand or stroke their back” (P21). Such actions of human connection were frequently emphasized by participants as they discussed the importance of dignity for dying patients.

A physician expressed dismay that in a crisis, dying patients were put to the side and did not receive attention and “were already considered dead before they even died” (P23). In contrast, several participants described the importance of using “presence well” (P21) and enacting “accompaniment” (P4) for dying patients. Accompaniment also extended to supporting patients’ families; a nurse described providing support for the mother of a boy who had a severe spinal cord injury after falling out of a tree as an act of “help[ing] his mother walk through this whole issue” (P19). The value that participants placed on ensuring that dying patients feel accompanied and not abandoned is further illustrated by the following situation. A physician recounted why she had agreed to pray with a patient when the patient asked her to do so. Though describing herself as not religious, she expressed that praying with the patient “basically said I’m with you” (P18). Narratives such as these make visible the link in at least some humanitarian healthcare professionals’ minds between responding to palliative care needs with active presence and acknowledging a common humanity.

Dignity was also associated with addressing concerns related to privacy. For example, a nurse described at length why she felt that providing privacy for a dying patient was crucial for her dignity: “that’s a huge piece of it too, like – not being on display for everybody, so having privacy, I think, when you’re talking about what’s important in palliative care, the dignity aspect is huge” (P19). She discussed, however, that it was important to consider the possibility of imposing norms of privacy without consulting the patient. Indeed, treating patients with respect as human beings was also linked to allowing patients to voice preferences and make choices. The humanitarian context sometimes makes it hard for practitioners to follow this ideal. Another nurse, reflecting on her experiences of the 2010 Haiti earthquake, noted that with “cross-cultural and language barriers, sometimes the patient’s opinions and thoughts just aren’t given the time and weight that they ought to be given” (P21).

A majority of participants emphasized the importance of preserving “culturally valued” (P21) and “culturally acceptable” (P7) end of life practices, acknowledging that what constitutes dignity and a dignified death is not the same across the world. This diversity may raise challenges for health professionals, especially for expatriates, including a physician who expressed the importance of caring “for those who may not survive and who also deserve a, whatever you define dignified as, a dignified death” (P6). The cultural dimensions of death and dying—including around dignity—led several participants to suggest that local health professionals were best placed to lead palliative care efforts. They also suggested that local religious leaders were important allies, and several gave examples of working collaboratively with such individuals. An African physician (P5) who had responded to a humanitarian crisis in a neighboring country went further and suggested that palliative care efforts should be community-based with international NGOs’ roles limited to providing oversight and support.

Efforts to uphold dignity also extended beyond death and included family bereavement. Participants described the importance of memorials and funeral services, including a physician who explained that she chose to attend a memorial service as a way of honoring patients who had died (P3). Infection control during Ebola presented many challenges in this regard. For example, a nurse reported that while traditional practices of washing the dead body were not allowed due to risks of spreading the virus, they sought to “unzip the body bag for [the family] from a distance so they can see, and having more attention to kind of what the funeral process looked like, and so then we could, at least as much as possible, honor each person” (P21).

From initial contact until after death, actions to uphold the dignity of patients facing death were felt to be critically important, even amidst the inherent complexities of response. Through acts of caring, responding to suffering, upholding privacy, and respecting traditions, participants expressed that the identities and individual worth of each dying person could be realized.

Balancing care priorities

Several participants expressed that it is important not to extrapolate from the most acute situations of urgency as a rationale for not addressing suffering or promoting dignity for patients in other humanitarian settings. As the acuity of an emergency decreases, a physician noted that the rationale to limit healthcare to primarily lifesaving efforts, with limited attention available to respond to other needs, “doesn’t stay true” (P18). Moreover, a distinction was drawn between basic care that attends to suffering and dignity and a more comprehensive version of palliative care, which some saw as “a luxury” (P2, P11) in acute humanitarian settings.

Fundamentally, participants highlighted what they saw as a false divide and the need for more integration of curative and palliative approaches. Addressing the possibility that the focus on lifesaving would not leave room for palliative care approaches, a participant thus called for humanitarians to reject a choice between palliative care and curative care. He expressed that humanitarians should provide lifesaving care and “simultaneously…provide essential, basic human care to [patients who will die]. And it’s not one or the other. It’s we need to combine both approaches, and this probably is a small revolution in the way we envisage our role in the field.” (P10).

Working within, and resisting, systemic constraints

Participants’ efforts to provide palliative care were circumscribed by systemic constraints inherent to humanitarian operations and to the wider context of global inequality in healthcare access. Participants identified the different ways in which they engaged with unfair systems, and the impact these different ways of engaging had on the care they provided patients, and on their own well-being as care providers. Participants emphasized that it was feasible to address many needs of dying patients in humanitarian settings. A physician who had worked in three situations of armed conflict stated that “… from a human compassion perspective, some things that people die of are painful and uncomfortable. And we have the tools to limit that discomfort and we should use them” (P23). Various features of humanitarian projects were identified as enabling such care, including strong partnerships with local organizations, having clear guidance and supportive leadership, and access to opioids and other needed resources. However, it was more common for systemic features and a range of barriers to constrain health professionals in their response to those who were dying or likely to die. For example, care options are often limited by lack of access to material and human resources. Participants described lack of access to pain medications, especially opiates, as well as equipment (e.g., diagnostics, ventilators) and supplies. Shortages of staff with skills and training in palliative care or the presence of staff with skeptical or contrary views (be they local or expatriate health professionals) were also highlighted as barriers. When coupled with a lack of clear palliative care organizational policy guidance and clinical guidelines, these obstacles were further reinforced. Other systemic features were also identified. Participants were concerned when they saw patterns of neglecting suffering. For example, a physician felt that this tendency reflected a “tyranny of low expectations” (P22) which she associated with a form of implicit racism and which resulted in humanitarian organizations responding inadequately to pain and suffering. Overall, participants stressed that these challenges can and should be addressed with sustained effort to improve access and the quality of palliative care available.

Participants framed many of these features as unfair and as resulting from and/or contributing to wider inequalities. They described circumstances as unjust at the global level, such as inequalities related to which nations bear the brunt of the global refugee crisis (relative to their wealth and influence), or whether a particular patient would have survived their injuries if they had occurred in the participant’s higher resourced home country. While discussing a patient who died of an infected wound, a physician from a high-income country noted that “I think we found it challenging because…if we’d seen this guy pre-hospital anywhere in [home country], we would have been able to deal with lots of these issues quite effectively” (P17). Another physician described her distress “performing treatments that I knew I could do with less pain and better tolerability in a better setting, but was unable to do at that time” (P22).

Participants also discussed unfairness in particular circumstances, such as expressing frustration when encountering patients dying from conditions that could have been easily prevented with better access to basic healthcare, and unfairness when certain subgroups within the local population had less access to care. Several participants also identified inequalities or inequities across humanitarian projects. For example, a physician described how there was “an uneven supply of medications across” (P3) Ebola Treatment Centers, including morphine. Discussing the same situation, a nurse identified the source of these inequalities as different rules amongst the Ebola Treatment Centers funders and partnering organizations. She worked in a center where the rules of a partnering organization prohibited the use of morphine and expressed that, as a result, “there was a lot of frustration that things were really bad for the patients in our treatment centers, and unfairly so” (P21).

Humanitarian health professionals react to these difficulties in varied ways, sometimes going beyond adjusting perspectives, to losing perspective. A physician reported that the austere and difficult circumstances of humanitarian emergencies can lead expatriate health professionals to “turn people into ‘other’, turn off your emotions and just be like, ‘hold them down and we’ll do this’” (P22). She asserted that taking this perspective must be actively resisted; regardless of the circumstances in which people are living, they should be treated with respect and be provided care to relieve their suffering.

Stories of responsiveness and adaptation in the context of the West African Ebola epidemic, for example, highlight ways that teams became more adept at working within and pushing against constraints, including by challenging policies and innovating to better address needs of patients in a context of extremely high mortality rates. A participant described that his team “got a lot braver and a lot more bold with how we were treating people and giving them a lot more attention or a lot better care” (P11) as the Ebola outbreak progressed and they developed more knowledge and skill for managing infection control risks while providing better and more compassionate care to patients. In other settings, emergent technologies were identified as providing support to overcome obstacles to care. For example, telemedicine was identified by two participants as a means to access experts in palliative care in situations where the team lacked such expertise. In another context, a physician described how, even when opioids were not available, ultrasound-guided nerve blocks could be used to provide effective pain relief.

Advocacy was also described as an important positive response to obstacles and constraints. This might occur at multiple levels: within the team, in the organization, and internationally. A physician policy-maker expressed that humanitarians should “advocate...for palliative care in humanitarian crises to be a basic human right…It should be the norm. It should be a human right and the norm” (P1). Many participants suggested that humanitarians can advocate within their organization for better access to resources needed for improving both curative and palliative care. A physician expressed that these dual advocacy efforts go “hand-in-hand” (P3). Discussing the many burned patients for whom her team was unable to provide adequate pain medication, a physician expressed regret that she had not been more forceful in her advocacy efforts, saying that “If I had been a little bit more on the ball about it, I could have kicked up a bigger stink” and demanded morphine and ketamine be made available (P22). These various responses ultimately reflect the weight of responsibility and moral obligation participants experienced in how they responded to patients in their care who were dying.

Bearing the weight of responsibility

The narratives convey a profound weight of responsibility felt by the participants. In stories of palliative care “done well” in a humanitarian setting, this weight felt lifted or at least lighter on the shoulders of participants. Many participants could not think of a case where palliative care was done well, but amongst those who could, their experience was a source of deep satisfaction. Providing effective palliative care “…allows the healthcare workers to feel that they are contributing and they haven’t failed” (P6). However, even when care was done well, these encounters could still haunt participants as morally and existentially significant. For example, a nurse who had worked in an Ebola Treatment Centre described “a little girl, I think about the age of nine, and who called me, ‘Uncle can you hold my hand’, and because I knew that we could sit down and talk to them, so – which I did, and once I held her hand, she died… and so, for - for many, many months, even when I came [home], I could still feel that touch…I could still feel - hear that voice” (P20). This experience stayed with him, and he described it as one factor in his seeking psychological support after returning from his field mission.

Situations which participants characterized as care not done well were often associated with particularly heavy emotional strain. Some described feelings of having failed certain patients, and these situations gave rise to distress and feelings of guilt or regret. This response was particularly acute when participants felt that they were implicated in a situation that was profoundly and inescapably unjust. For example, a physician described how “I’ve literally watched hundreds of babies seize to death and it’s just a terrible…But I didn’t have a way of keeping them comfortable, and letting them die in a warm, comfortable place and that really haunts me” (P22). Feeling somehow complicit in what was occurring, she went on to say that “I don’t believe in hell, but I kind of think there is a special place in hell for me.” Especially difficult were circumstances when patients who were dying in pain were turned away from care, a situation which can be “devastating emotionally” (P10) for humanitarian workers: “…it goes against everything that you – as a healthcare worker, as a humanitarian, everything – to do that to a human being, you know they’re not gonna make it and just put them aside, it was – terrible (P19).”

In addition to stories of not providing care to dying patients or of insufficiently addressing symptoms or dignity for dying patients, participants also reported distress about providing treatment that prolonged the suffering of a dying patient when the participant felt that care should have been focused on palliation but was not, due to security concerns, or at the insistence of the family or other healthcare professionals.

Participants described strategies that helped them carry the weight of responsibility. They emphasized the importance of sharing the weight with trusted colleagues, through discussion and collaboration within teams. Close team relationships that included shared plans for responding to the needs for palliation were described as important. A physician described how a shared plan allowed his team to feel “comfortable with whatever was going to happen” (P15). Others talked about redirecting their feelings of not having provided sufficient care to some patients into action aimed at helping other patients, including through advocacy.

In contrast, several participants described actively trying to forget certain troubling experiences. Organizational strategies including support and debriefing were also identified as valuable. A nurse described the lack of ongoing psychological support for health professionals, especially national staff, providing care in Ebola Treatment Centers as one of the “big fails” of his organization (P11). He also identified training prior to departure as an important component for helping people anticipate the challenges of facing suffering, dying, and death, and better preparing for them.

For these participants, the weight of responsibility did not lift after they returned to their home countries. They reported lingering impacts of these experiences of responding to the needs of patients who were dying or likely to die in humanitarian crises, or of being unable to respond to these needs in what they felt was the right way.

Scope and limitations of the study

This paper focuses on the experiences of expatriate health professionals responding to the needs of patients who are dying or likely to die in a humanitarian crisis. This is an important perspective, but still a limited angle of view. Investigating how patients, their families, and local communities and health professionals view and experience these situations is essential for better understanding what is at stake and for whom. Our larger research project involves in-depth field research in humanitarian settings, including perspectives from patients and their families. These inquiries will provide additional vantage points for understanding this topic. Several limitations are relevant to the analysis presented here. Our purposive sampling strategy was only partially successful. Most of the participants were Europeans or North Americans who primarily worked with the largest of the international NGOs. This does not reflect the wide range of nationalities of expatriate humanitarian professionals, or the spectrum of humanitarian organizations, and has undoubtedly shaped the range of experiences and ethical outlooks of the participants.