According to the American Refugee Committee, who initiated and who continue to provide health services in camps across Rwanda, “conditions in the camp[s] are difficult and many people have had to leave their families behind” (ARC). Such conditions make the experience of dying and death all the more emotional and complex, raising a number of ethical dilemmas for health care and psychosocial supporters about if and how palliative care ought to be addressed. If not addressed systematically, such dilemmas can lead to moral distress and burnout on the part of healthcare providers, and to despair and mistrust (of healthcare providers, of aid organizations) on the part of refugee patients and their families (Hunt, Schwartz and Elit 2011; Schwartz et al 2010).

For Christian Ntizimira and colleagues, a palliative care leader in Rwanda, “freedom from pain is a universal right, crossing cultures, ethnicities, beliefs, and religions, and must be rooted in the concept of humanity” (2014: 2). Such a statement is of great significance for the care of refugees’ care in Rwanda, as healthcare to this particular population is provided by local health authorities in collaboration with international aid organizations. “Humanity” is one of the fundamental principles guiding humanitarian practice and concerns the alleviation of suffering (Fraser et al 2014; OCHA 2012). Likewise, the language of human rights is increasingly associated with humanitarian healthcare as the focus shifts from addressing basic needs to the defence and fulfilment of individual and group rights (Darcy 2004: 4). Our study aims to explore the extent to which these and other humanitarian values and principles, along with professional and personal ones, are being realized or thwarted in relation to palliative and supportive care provision (Hunt and Carnevale 2011; Kleinman 1999). In other words, we are exploring ethical and moral experiences of palliative and supportive care in the humanitarian context of refugee health. Underlying values form the foundation of care decisions and can be the source of ethical dilemmas that make decision-making more difficult; this can have negative consequences on patient care and mental health of care providers.

In order to develop guidance and training aimed at better preparing humanitarian healthcare teams for palliative care needs in the field research is required. Existing palliative care competencies may not transfer easily into different humanitarian settings given different local socio-economic and inter-cultural conditions. Research into palliative care provision in Rwandan refugee camp situations will benefit policy and planning decisions of international aid organizations working in acute and protracted refugee contexts and enhance collaboration with local health care systems. In exploring the values and expectations on the part of healthcare providers and recipients of care, aid organizations and healthcare professionals can be provided with insight into decision-making practices, and ways of preparing for instances when values and norms between cultures, professional groups, or individuals may not be similar (i.e., not of equivalent moral weight) leading to ethical dilemmas and conflict. Further, this research explores what is at stake when palliative care is or is not provided: What does the provision or lack of provision of palliative care say about aid practices, human relations, and humanity more broadly when alleviation of this type of suffering is/is not addressed?

Globally, each country that is home to refugees manages refugee healthcare needs in unique, context-dependent ways. That being said, there are similarities to the ways in which refugee healthcare is managed and provided in Rwanda as in other locations. For instance, in many cases, the United Nations High Commissioner for Refugees (UNHCR) is present providing a variety of material and administrative supports. In Rwanda, they provide administrative support for the establishment and maintenance of camps, including administrative support of refugee health services. The UNHCR in Rwanda does not provide health care directly, but provides logistical support for international actors such as the ARC to provide healthcare in the camps, and the UNHCR provides financial supports for refugees to obtain healthcare locally when it cannot be had in the camp clinics. This is different than in other locations where refugees reside. In Jordan, for instance, the UNHCR works with partner organizations to bring in expatriate physicians to work in the camp clinics in order to minimize strain on the local health system.

The Rwandan government aims to provide equivalent healthcare to refugees as to its national population. With that in mind, the UNHCR covers the costs of co-pays that are otherwise covered by patients. Our project proposes exploring the extent to which care to those who are dying or likely to die is being or is anticipated as being provided, paying particular attention to: the values behind and the practical issues associated with psychosocial supports (e.g., family, spiritual), access to opioids, cultural norms and expectations, and health care provider competencies.

Being one of four thematic cases studies that make up our full study, Rwanda was selected as a site location that focuses particularly on protracted conflict/refugee situations because it is a country that has been a generous host to refugees from ongoing and recurrent conflicts for much of the past two decades. Ongoing conflict and recurrent tension that periodically turns violent in both the Democratic Republic of the Congo (DRC) and Burundi have resulted in a protracted refugee situation. Rwanda’s shared border with the two countries has made it a preferred place for those fleeing violence and persecution to seek temporary and longer-term shelter. Having lived through its own history of violence, Rwanda now has a reputation that is enviable among many of its neighbours and other countries of comparable size (Burnet 2011; Hron 2009). That it has recently implemented its own national palliative care strategy suggests there is a growing sensitivity to the alleviation of suffering for all those residing in its borders. Furthermore, that it is host to recently developed and long-standing refugee camps, provides a rich opportunity for comparative data to be collected.

By 2013, “85% of providers at the 42 district hospitals in the country had been trained on the national guidelines for palliation. Morphine was added to the national Essential Medicines List and is in the process of being included in the supply chains of the 42 district hospitals and the health centres in the hospitals’ catchment areas” (Binagwaho et al 2013: 700). Despite these laudable advances, human and technical resources remain ongoing areas of sustained focus on the part of policymakers, educators and practitioners in Rwanda. Training continues in terms of opioid use and the development of multi-disciplinary palliative care teams. There is a centralized national plan that is coordinated through the Rwandan Biomedical Centre, while front-line palliative care is being serviced through Palliative Care desks and teams at Referral, Teaching and District hospitals throughout Rwanda (Mukasahaha, Muhimpundu, and Tayari 2016).

Taking a human rights approach to palliative care, Rwandan leaders in the field “have come to believe that palliative care is an important vehicle for social justice for many of our patients, as it acknowledges their complex pain, treats them humanely, and works to establish their dignity and relieve their suffering” (Ntizimira et al 2016: 276). How this perspective translates to palliative care for refugees remains to be explored through our study, but it complements preliminary findings from the interviews we conducted with healthcare providers working for a variety of international aid organizations who recognize a place for palliative care in humanitarian response (Hunt et al: 2017). Fundamental humanitarian principles and priorities such as alleviation of suffering and respecting human dignity were cited as primary reasons why palliative care should be part of humanitarian actors’ toolkit, alongside the primary goal of lifesaving (Hunt et al submitted).

Despite positive overtures, the realities of limited resources and individuals’ perceptions of palliative care, continue to be sources of ethical concerns. Rwanda remains a country with limited technological and human resources. Such shortages can be amplified in refugee camps. As a result, palliative care can be seen as an extravagance. For one, opioids or medical care are arguably best reserved for those likely to survive. Indeed, in the humanitarian context, “the imperative to rescue…is seen by some as always to be prioritized over efforts to alleviate suffering” (Hunt et al 2017). Alternatively, palliative care is seen as a failure of the medical system; sentencing people to a premature death instead of providing more intensive curative treatments. In the Rwandan context, “ignorance of palliative care is still our weakness…still most people think palliative care is just throwing people in a bed and waiting for them to die” (Ntizimira in Vogel 2011: E1054).

For refugees who face additional burdens including financial, language and cultural differences, or being removed from familiar social and political networks, to be able to manage life-threatening or terminal illness, and to seek medical and psycho-social care is practically and materially more difficult than for the local population. Additionally, the unfamiliarity with local practices and perceptions of palliative care compounded by an alteration in identity from “citizen” to “refugee”, from “healthy” to “sick” or “dying”, mean personal values may shift, and may come into conflict with norms and values of others in positions of authority in their new surroundings, making their situation even more distressing and difficult.

REFUGEE health and healthcare in Rwanda

As of August 2016, “Crude Mortality Rate (0.2%), and Under Five Year Mortality Rate (0.4%) remained improved and stable” on average across all camps in Rwanda (UNHCR 2016a). Of the approximately 172,000 refugees currently residing in Rwanda, about 21% have severe medical conditions, 19.5% have disabilities, and 9.7% are older persons at risk (UNHCR 2017a). HIV/AIDS represents the greatest life-threatening disease burden in the camps (UNHCR 2016a). With increased access to highly active anti-retroviral therapy HIV/AIDS is, for many patients, a chronic but still life-threatening condition (Uwimana and Struthers 2007). Globally, cancers are taking over as the leading cause of death over malaria, tuberculosis and HIV/AIDS combined (Tapela et al 2016: 2), effecting refugee and non-refugee populations.  Along with chronic life-limiting and terminal diseases, there remain risks in large population settings such as refugee camps of diarrheal diseases and other sanitation related infectious disease. Indeed, in October 2015, the Mahama camp experienced an outbreak of Salmonella typhi that resulted in an estimated 1663 typhoid fever cases (Nahimana et al 2017). Life-threatening if no properly managed, fortunately no fatalities were recorded with this outbreak.

The health figures reveal the reality that despite the life-saving priority of health care and of humanitarian action, many lives cannot be saved, and people will experience dying and death away from home. The experience will often be in the care of a combination of local and international health care aid organizations, particularly in the absence of family supports.

While there is a paucity of literature on palliative care within refugee populations, particularly in sub-Saharan Africa, research on palliative care in Rwanda can provide clues as to what we might expect with our proposed research. Institutional or hospital based palliative care has been noted as the preferred place of death for Rwandans dying of HIV/AIDS who had lost family members during the 1994 genocide. Perhaps not a true reflection of the ideal form of care at end of life for Rwandan, it is more likely a reflection of the practical reality of no longer having family members alive to look after them (Uwimana and Struthers 2008). Similar and overlapping histories of political and ethnic violence experienced by refugees from Burundi and the DRC mean they may also not have family members nearby to care for them as they die. Like Rwandan’s who are dying, Burundian and Congolese refugees facing end of life may prefer institutional care by default because they have left family members behind or because their family members have been killed during periods of heightened conflict.

In a pioneering study of met and unmet palliative care needs of HIV/AIDS patients in Rwanda, the authors cited “medical needs, psychosocial needs and the need for financial assistance (77%); home-based care (47%); nutritional support (44%); and pain relief and management of other symptoms (43%)” as prioritized needs (Uwimana and Struthers 2007). These needs were recorded before Rwanda unveiled and began to implement its national palliative care program. Subsequent literature has shown that many of these needs among people living with HIV/AIDS are being addressed through the new national strategy (Krakauer et al 2018). Likewise, Rwandan cancer patients are finding more opportunities for comprehensive palliative care (Shulman et al 2014; Stulac et al 2015). Uwimana and Struthers’ paper remains relevant for our study as it provides a baseline of possible met and unmet needs within refugee populations, at the very least it provides a comprehensive point of comparison.

In terms of refugee healthcare in Rwanda, there have been several studies conducted among Congolese refugees in Rwanda mainly around women’s health and mental health (Pavlish 2005, 2007; Pavlish and Ho 2009; Pavlish, Ho and Rounkle 2012; Sipsma et al 2015; Wako et al 2015). In narrative research of Congolese refugees in Gihembe camp, Pavlish explored the experience of being a refugee in Rwanda and various healthcare issues among female Congolese refugees (Pavlish 2005, 2007). Following her earlier research into mental health and gender-based violence within Congolese refugee camps in Rwanda, Pavlish (2009, 2012) proposed a rights-based health approach to refugee healthcare, particularly in post-conflict settings, as it encourages “recogniz[ing] all persons as rights bearers and focuses on supporting them as they seek to realize their capabilities and rights [and thus] serve as a cogent integrator for transorganizational collaboration and program efficiency” (2009: 155). Though not palliative care specific, human rights is a worthwhile lens to adopt for refugee healthcare in general, and palliative care specifically, as it is in line with the four-pillars of palliative care—advocacy, partnership, service delivery and staff capacity—that have been proposed by Grant and colleagues in the implementation of palliative care programs in Rwanda (Grant et al 2017).

Recently, Ntizimira and colleagues (2016) explained some of the differences between Western and Rwandan experiences and expectations around dying and death. Western medical philosophy is founded upon the value of autonomy, which requires that end-of-life decision making remain in the hands of the patient until prescribed to a proxy. Framing the Rwandan experience through the broader African concept of “Ubuntu”, Ntizimira et al explained the crucial role of the extended network of family and friends at a loved-one’s moment of dying. The authors suggest “the more we know about patients’ families, the better we can identify the person who has most influence in patient decisions” (Ntizimira et al 2016: 277). For international aid actors, knowledge such as this is crucial for the ethical unfolding of palliative practice in the Rwandan context and increases sensitivity to similar expectations of family involvement or other cultural specificities of normative decision-making practices among Burundians and Congolese. For Ntizimira and colleagues, being responsive to such cultural norms,

“helps us develop an effective plan of care, with the objectives to:

·       Improve quality of life: provide medication to manage pain and symptoms and offer counseling and spiritual support for both patients and families

·       Reduce cost: eliminate unnecessary travel, use mobile cell phones to communicate about care and services, refer to village community health workers trained in palliative care, and educate about the role of traditional healers

·       Increase value: motivated by the dark history of Rwanda’s genocide, bring caring, dignity, and a sense of humanity of our patients by integrating Ubuntu philosophy, this African spirit of connectedness and belonging” (Ntizimira et al 2016: 277).

Receptiveness to cultural norms and expectations around palliative care, cannot be underestimated in terms of their value in the ethical provision of refugee healthcare.  Likewise, palliative care cannot be offered as alternative to robust curative care. Indeed, palliative care cannot be considered as optional, “not [as] an extra or an afterthought, and it is not ‘socialization for scarcity” (Postow 2012: 61).

Based on this literature, our research questions with this case study include:

·       What expectations do refugees have of humanitarian agencies or local Rwandan healthcare providers?

·       What values shape those expectations or expectations around the type of care and its provision?

·       How do those values on the part of refugees interact with local and international healthcare providers’ values and principles?

·       What are the moral obligations or social responsibilities on the part of local and international actors towards refugees who are likely to die?

·       What special sensitivities must those actors have with regard to the compounded vulnerabilities and traumas experienced by terminally ill and dying refugees?

We will work to fill the gap in the literature around end-of-life and supportive care among refugees in Rwanda as we seek answers to these—and other—questions with our proposed research.

Our research will be concentrated at the Mahama camp in Rwanda’s Eastern Province. The camp opened in 2015 by the Rwandan Ministry of Disaster Management and Refugees (MIDIMAR) and UNHCR. Spread across 50 hectares, it is home to some 50,000 Burundian refugees (representing some eighteen thousand households) (Nahimana et al 2017: 2). It is by far the largest camp in Rwanda at the moment, almost double the size of the next largest camp. Being such a large camp, and home to so many, “the camp is divided into 25 villages with a minimum of seven leaders in each” (UNHCR 2016b). The camp is largely populated by refugees from Burundi who fled “when political crisis related to presidential elections erupted into violence in Burundi” in 2015 (MIDIMAR 2015).

In January 2017, two new health clinics were opened in the camp under administration of the UNHCR, its partner organizations and supported by various international, local government and local non-governmental organizations. The “UNHCR delivers primary healthcare for all refugees with [partner support] and ensures access to secondary and tertiary care [which is how much palliative care is provided] through support for national hospitals” (UNHCR 2017b). The healthcare at the camp is said to be “a health system similar to other sectors of the country” (Kalinda 2017). The health clinics at Mahama are staffed by Rwandan and Burundian health professionals; secondary and tertiary care is referred to local centres. Refugee patients, like Rwandan nationals, are expected to pay 10% of the total cost of hospital health services; the UNHCR and partners cover this cost for those who do not have the financial means. While a laudable practice, the experience of seeking this financial assistance may in itself be a burden too great for some very ill people.

The oldest camp, Gihembe, is in the North-West of Rwanda. It was established in 1997 and is home to approximately 13,000 people. Camps along the western side of Rwanda are populated by many Congolese who fled the DRC in the mid-1990s following the instability on both sides of the DRC-Rwandan border after the Rwandan genocide, and after the rise of multiple military and political factions grew in size and violent intensity in the DRC. Our intention is to include comparison with this oldest camp to explore the dying and death experience among its oldest or longest-residing inhabitants. Is the death experience different for people in a longer established camp where some of its residents may not have known any other home? Accounting for cultural differences between the largely Congolese residents in Gihembe versus the predominantly Burundian residents at Mahama, what are the similarities and differences in the quality and phenomenology of death experiences in these two locations?

We anticipate conducting semi-structured in-depth interviews with the following groups of participants: 3-5 local health care providers providing palliative or supportive end-of-life care to refugees in Rwanda (within camps or in local settings); 3-5 expat health care providers and/or policy decision-makers from international aid organizations providing palliative or supportive end-of-life care to refugees in Rwanda (within camps or in local settings); 3-5 patients who are or might have been eligible for palliative or supportive, and/or their family members.

Our aim with a total sample size of 10-15 participants is breadth and diversity rather than representative sampling. Combined with the similar sample-size interviews for our three other cases studies brings the total to 45-55 interviews and will be reflective of a diverse range of humanitarian crisis situations in which aid organizations operate and in which healthcare professionals face palliative, supportive care, and end-of-life issues.

Inclusion/exclusion criteria for local healthcare providers: must have, or have had in the recent past, among their patient or client population individuals who are living with life threatening or terminal illness, that may or may not be in active palliative care treatment. The healthcare providers may be physicians, nurses, pharmacists, psycho-social professionals, or similar. There is no minimum age or number of years of experience.

Inclusion/exclusion criteria for international healthcare providers: must have, or have had in the recent past, as their patient population individuals who are living with life threatening or terminal illness, that may or may not be in active palliative care treatment.  People in this category may be healthcare providers such as physicians, nurses, pharmacists, psycho-social professionals, or similar. These participants may also be health administrators supporting the provision of refugee healthcare (e.g., UNHCR administrators). There is no minimum age or number of years of experience.

Inclusion/exclusion criteria for refugee patients and/or their family: we seek to talk with 3-5 individuals who are refugees, 18-years or older, living in Rwanda with a life-threatening or terminal illness. Individuals with chronic conditions must be at an advanced stage in the disease progression, at a point where palliative measures are being considered or being enacted. They may or may not be receiving palliative care at the moment, for whatever reason. They must be English-, French-, Kinyarwandan- or Kirundian-speaking. While there are cultural barriers that often restrict peoples’ ability to be open about their state of health, potential participants must be willing and able to talk about their health condition and the healthcare being provided to them in an open and frank manner. They do not have to be knowledgeable about palliative care as a medical treatment, but they should be able to recount a narrative of their health and the healthcare they are (or perceive to be) receiving. They must be physically comfortable enough to be able to participate in an in-person interview that will last approximately 45-60 minutes.

Analysis:

Analysis for data collected in Rwanda will follow the same process applied to the data collected for the overall study. Two experienced qualitative researchers will analyse interview transcripts in NVivo qualitative data management software using directed thematic and interpretive approaches. The combination of these approaches is based on the need to attend to both explicit and implicit values and assumptions underlying participants’ experiences and perceptions of palliative care possibilities and limits in specific humanitarian settings. With an interest in informing future policies, we will also identify linkages between participants’ stories and WHO principles of palliative care.

This research will be of interest to a subset of Rwandans with research, practice and decision-making interest regarding palliative and end-of-life care. This study will provide descriptive, analytic and ethical findings related to the provision of such care to refugees residing in its borders. The findings will have policy and practice implications at intra-local and international levels, providing health care professionals and policy decision-makers context specific and globally situated knowledge that will benefit patient care and public accountability.

Studying palliative care practices and possibilities can improve patient care, can benefit patients and health care professionals, and be cost-effective for the Rwandan health care system more generally.

Given the similarities between Rwanda and Burundi in terms of their cultural heritage and histories of colonial rule and post-colonial genocidal violence, the findings from our study—however modest—will offer information of relevance for the ongoing adaptation of palliative services within a context of historical trauma.

IMPACT OF THE OVERALL STUDY

The narratives (n=24) we have gathered so far from humanitarian healthcare professionals (HCP) about their experiences with end-of-life and supportive care situations—ranging from public health emergencies, to mass casualty ‘natural’ disasters, to conflict settings—brought to light the numerous moral experiences. In particular, the inability to provide palliative care profoundly impacted HCPs’ worldviews along with their professional and personal identities, leading many of them to deeply question the role of humanitarian action particularly the paradox of prioritizing life-saving at the expense of easing the suffering of those not likely to survive.

Though fewer in number, the rich, insightful and thought-provoking interviews we completed with Syrian refugees in Jordan (n=6) and Ebola Virus Disease (EVD) survivors or family members of people who died of EVD in Guinea (n=4) have brought important information to light. For instance, a prime concern among refugees is being able to locate and communicate with family members who remained in Syria or whose whereabouts are unknown. For aid organizations with family reconnection resources and skills, such knowledge is invaluable in the delivery of palliative care. In the case of a public health emergency, the value of palliative care could not be overstated enough by some participants—survivors and HCP alike—not only in terms of providing respectful end-of-life care but also as a primary life-saving measure during a major epidemic emergency. As refugee and forced migration numbers continue to swell worldwide in unprecedented numbers (UNHCR 2017), the findings from our overall study, and from within refugee communities residing in Rwanda as one exemplar context, will be valuable evidence in the development of ethical and resonant palliative care.

Given the variety of responses received thus far in our research, it is clear that there remains much to offer even in the most dire of situations.