Barriers to Palliative Care in Humanitarian Crises
Although it is important to remember that there is always something that can be done in providing palliative care in any humanitarian crisis there are many barriers.
A few have been noted earlier, the competing priority of saving lives is one that may be easing as awareness of palliative care needs and options in humanitarian work increases. Competition for scarce resources that might save lives rather than support palliative care, and access to medications such as opioids for pain management are all well documented (Hunt, Nouvet & Chenier 2020). The lack of knowledge about palliative care and the need to consider biopsychosocial, emotional and spiritual needs. The nature of the humanitarian crisis may present or emphasize different barriers and may limit or delay access to essentials such as clean water, food, supplies and people to help. For example, earthquakes where key structures such as roads, bridges, water, sewage and power lines are broken present barriers experienced by all living and injured in the area. In contrast wars or conflicts may create different and additional challenges where specific ethno-racial populations may be targeted, transportation, supplies and personnel getting through to help may all be interrupted or at risk and those seeking to respond may also be in some jeopardy.
Limited available expertise in palliative care and limiting palliative care provision to trained health professionals are also barriers. Training for humanitarian responders in palliative care is increasingly acknowledged in published guidelines for the humanitarian sector. In situations where the need for treatment is immediate or can wait, palliative care remains an option to provide comfort, relief from pain, distress. Whether or not lives can be saved palliative care offers possible relief from pain, help with distress such as anxiety, anger, grief, companionship in the absence of family or other friends. Health professional teams may include community health workers which is a good example of extending available supports and resources with trained lay health workers. Community health workers can also support a family member, friend or other ally, to provide comfort, help with water, hygiene, dressing, food and administering medications, the basic essentials to those most impacted by the crisis.
Communication and gaps in cultural understanding may also be barriers. Understanding norms and expectations about communicating impending or anticipated death to affected individuals may be difficult. Knowing what individuals want or hope for is helpful in addressing their needs and careful questioning will clarify what they know about their condition and what they wish to know. How much do they know or want to know? Those who are injured or ill may want to ensure that relatives know what is happening to them and may ask about their expected outcomes. Asking individuals how they are doing, are they suffering, how to help them, do they need something to eat? drink? someone to be with them even if not talking. Consider how to help those who are surviving, to support those engaged with the person and their care provider(s), the family member, friend or professional. Understanding the meaning of symbols, gestures, beliefs about death and dying can help the individual and their attendant.
Compassion fatigue may become a barrier to effective palliative care provision and care in general. Support for the mental health and well-being of providers and other witnesses is essential to sustain help and care for those most affected.
Ethos and Priority Setting
Providing palliative care challenges us to consider, how do we use resources in humanitarian settings, questioning the emphasis on efforts to save lives over efforts to alleviate suffering.
In the past, it was often suggested that given the elevated needs and limited resources, in an acute crises, non-curative treatments should only be started once all curative initiatives have been implemented. However, we have an ethical imperative to alleviate suffering.
There may be an underlying assumption that saving lives and relieving suffering are mutually exclusive, and that choosing more of one, equals less of the other. However these objectives are not mutually exclusive, and it is feasible and preferable to develop health programs which integrate both aims, since relieving suffering it is not only needed for dying patients.
A 2018 report by Médecins Sans Frontiers (MSF) stated that “Organizations go for the ‘low-hanging fruit’ by responding where needs are evident and access straightforward, rather than moving beyond their areas of regular operations”(6). This may lead to under prioritization of palliative care.
The humanitarian sector has become increasingly professionalized, well-resourced, organized, but it is struggling to keep pace with the growing demands of more recurrent and more protracted humanitarian crises. Organizations may not want to step outside of their established areas of knowledge and expertise, but as crises become more protracted, addressing chronic health conditions, conditions where palliative care is often needed, becomes a more pressing need.
Hunt, M., Nouvet, E., Chénier, A. et al. Addressing obstacles to the inclusion of palliative care in humanitarian health projects: a qualitative study of humanitarian health professionals’ and policy makers’ perceptions. Confl Health 14, 70 (2020). https://doi.org/10.1186/s13031-020-00314-9