Aid when there is “nothing left to offer”: A study of ethics & palliative care during international humanitarian action
- Schwartz, Lisa, Matthew Hunt, Carrie Bernard, Kevin Bezanson, Sonya de Laat, Laurie Elit, Leigh-Anne Gillespie, Elysée Nouvet, John Pringle, Lynda Redwood-Campbell, and Ross Upshur. “Aid when there’s ‘nothing left to offer’: A study of palliative and supportive care during international public health crises (Pall-IPHC).” ELRHA: Research for Health in Humanitarian Crises (R2HC#21178).
In humanitarian crises such as disaster, epidemic, conflict or extreme deprivation, triage approaches tend to direct limited resources to those most likely to improve and survive (eHospice 2015). Standards of clinical care for crisis settings emphasize that patients who are dying should be treated with respect, accompanied (Institute of Medicine 2009), and provided with pain relief (WMA 2006). Where demands for care dramatically outweigh resources, however, dying patients may be left unattended, or attended by health care providers (HCPs) who do not know what to do for them, or worse, who treat patients as if they were already dead (Orbinsky 2008). Exhaustion and confusion in the chaos of disaster can worsen the situation (Roy 2013). The premise of this study is that following sudden onset disaster, epidemic, or during protracted armed conflict, humanitarian teams often operate in high mortality settings, raising crucial questions about care for the incurable and the dying, their families, and communities. We aim to better understand ethical and practical experiences, challenges, and possibilities of humanitarian organizations integrating palliative care into public health emergency responses. We will work closely with World Health Organization (WHO) knowledge users and collaborating centers in order to inform education and policy evidence on the provision of palliation with the goal of equipping humanitarian response with a more explicit lens and skill set for managing patients who are suffering with life threatening conditions during public health emergencies.
The 67th World Health Assembly (WHA) resolved on “strengthening palliative care as a component of comprehensive care throughout the life course.” The World Health Organization (WHO) calls palliative care “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening conditions, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual” (http://www.who.int/cancer/palliative/definition/en/). Palliative care is an area of growing global concern. It is increasingly recognized as necessary (WPCA 2014), yet simultaneously seen as outside the realm of possibility in many contexts; particularly in humanitarian settings where care in life threatening conditions may be logistically, legally, and ethically challenging – especially where competition for resources is fierce.
This study will help confirm whether and to what extent, humanitarian organizations train staff in palliative care approaches and competencies (National Consensus 2009; WHO 2008). It will allow us to understand how agency policies incorporate palliative care, and why palliative specialists do not appear to be sought for field teams (Ager & Iacavou 2014). Even during the Ebola crisis, when palliative and supportive measures were the only evidence-based treatments available (Zarrabie et al 2015), we have no indication that palliative specialists were recruited or formally consulted by humanitarian organizations. HCPs struggled, felt defeated and expressed frustration at feeling forced “to turn our treatment facilities into palliative care facilities” (Gillis 2014). Access to palliation and more specifically the alleviation of avoidable physical and psychosocial suffering at the end of life are increasingly affirmed as fundamental human rights (Human Rights Watch 2012; Lohman et al 2010; WPCA 2014; WMA 2005: Principle 10). The Ebola crisis crystallized the need for humanitarian HCPs to be better equipped to enact and recognize the value of non-curative care where appropriate.
Developing guidance and training aimed at better preparing humanitarian healthcare teams for palliative care needs in the field requires research. Existing palliative care competencies may not transfer easily into crisis settings (Klepstad & Gisvold) in the face of social-political or environmental catastrophe. We do not know whether, when, how, why the care of the dying by humanitarian HCPs has been seen as culturally sensitive or inappropriate in the eyes of local HCPs and communities. Presently, we do not know what components of palliative care, if any, are perceived by those on the front line of humanitarian policy and delivery as particularly (im)plausible, crucial or peripheral, in humanitarian action. We know that culturally and historically-specific norms and beliefs influence what is considered ethical and feasible with respect to palliation in different settings (Becker 1999; Bellamy & Gott 2013; Chapple 2010; Chaturvedi 2006; Cleary et al. 2013; Cuttini et al 2003; Green 2008; Johnstone 2009; Oetzel et al 2015; Onyeka 2011). Cultural taboos and legal restrictions on the use of opioid pain medicines pose significant challenges (Chaturvedi 2006; WPCA 2014). There is no universally preferred or expected family and community involvement in end-of-life healthcare, or universal definition of psychosocial and spiritual support (eHospice 2015; Johnstone 2011).
Palliative care provided through humanitarian organizations needs to be done in a way that is culturally appropriate and respectful, supports and strengthens local HCPs’ abilities to respond to the palliative needs of patients, and draws on rather than erodes local resources for managing the dying process. Gathering, comparing, and analysing accounts of care for the dying, as experienced by those enacting humanitarian policy-making and care, is a crucial step.
The need for humanitarian agencies to provide palliative care is not new (Dunant  1986). Previously, we conducted interviews with 90+ humanitarian HCPs and military HCPs with experience in humanitarian contexts, to better understand the ethical challenges they faced (www.humanitarianhealthethics.net). We collected stories about insufficient time, skills, or resources to treat the dying in a range of humanitarian crises. Authors writing about situations where resources are critically diminished following a disaster have proposed euthanasia (Holt 2008; Matzo et al 2009). These articles rarely suggest a palliation option. Such controversial recommendations became the focus of enquiry after Hurricane Katrina response, when a physician in New Orleans euthanized patients who could not be evacuated from a critical-care unit (Griffin & Johnston 2005; Fink 2009). Humanitarian HCPs in settings of conflict or post-disaster face similar dilemmas when aid agencies order quick evacuation of clinics for security reasons, introducing moral crises regarding the most ethically justifiable treatment for patients too fragile to be safely evacuated.
HCPs require a framework for providing palliative care in humanitarian settings so they can offer something even when ‘there is nothing left to offer.’
This research project is funded by Elrha’s Research for Health in Humanitarian Crises (R2HC) Programme. The R2HC programme aims to improve health outcomes by strengthening the evidence base for public health interventions in humanitarian crises. The R2HC programme is funded equally by the Wellcome Trust and DFID, with Elrha overseeing the programme’s execution and management.
Visit http://www.elrha.org/work/r2hc for more information about their funding programmes.