James Smith* and Tammam Aloudat**
*UREPH, MSF OCG,
**Medical Department, MSF OCG
Medical humanitarian organizations don’t generally deal well with death. This may come as a surprise, since it’s a sombre reality of this line of work that frontline staff are often witness to death and dying. Contrary to the humanitarian’s general propensity for self-aggrandizement, it’s not always possible to save lives. So what then of the oft-cited dual imperative to alleviate suffering and preserve dignity?
The evolution of the global HIV / AIDS epidemic during the 1990s, and more recently the 2013-16 Ebola outbreak in West Africa, prompted humanitarian actors to reconsider the role of palliative care in their programmes. During the height of both crises, health actors were pressured by a combination of highly virulent pathogens, inaccessible or non-existent treatment, the sheer number of affected patients, and subsequently very high mortality rates, to reconsider their modus operandi.
In 10 Years of Antiretrovirals MSF acknowledged that, in the absence of affordable anti-retroviral treatment, the organization chose to focus on prevention, palliative care, and the treatment of opportunistic illnesses in Malawi. The more recent Pushed to the Limit and Beyond report detailed MSF’s response to the West African Ebola outbreak. In the following extract Crestani, MSF’s Ebola Task Force Coordinator, offers a harrowing insight into the challenges faced by treatment teams in Monrovia during the summer of 2014:
“We had two choices – let those in who were earlier in the disease, or take in those were who dying and the most infectious … We could only offer very basic palliative care and there were so many patients and so few staff that the staff had on average only one minute per patient.”
In addition to very high mortality situations such as the Ebola and HIV crises, much of MSF’s medical humanitarian work still focuses on common diseases in very low resource health settings. Medical care delivered in hospitals in the Democratic Republic of the Congo or South Sudan, or clinics in Iraq or Syria, may save many lives. However, without the necessary resources and organizational and political prioritization, we continue to lose many patients to injuries and common diseases in these settings. In such cases, little may be done to alleviate the pain and suffering, and optimize end of life care, of those who cannot be treated. Advanced cancers, COPD, and congestive cardiac failure are difficult to treat and have yet to be addressed with necessarily broad management plans that capture the importance of end of life care.
Reflection 1: A Reluctant Acceptance of Limitations of Care
James Orbinski famously referred to MSF’s ‘ethics of refusal’ in the organisation’s 1999 Nobel Peace Prize acceptance speech. But what does this mean at the level of the clinical encounter? Clinicians often persist in their provision of care with curative intent, particularly when treating patients whose conditions are familiar to MSF: consider severe malnutrition and severe malaria, for example. The practice of humanitarian medicine in low resource settings is a continuous struggle between the desire to do better for individual patients, and recognition of a multitude of limitations, which often remain beyond the immediate control of medical personnel. It is imperative that this struggle does not impede the physician’s ability to make the most appropriate clinical decisions for individual patients.
Palliative care is now acknowledged as a central pillar of any comprehensive health system. This is clearly no different in the context of a humanitarian crisis. However, despite recognition that palliative care is routinely practised in many of our programmes, a dearth of evidence and guidance exists to support frontline staff and decision makers. There is no mention of palliative care in the Sphere handbook, and comprehensive reference to pain relief and palliative care is virtually non-existent in most of the publicly available guidelines published by leading medical humanitarian organizations.
How is it that palliative care has been so neglected by the humanitarian sector?
Utilitarianism’s Disregard of the Dying
Humanitarian crises exist where population needs exceed the existing capacity to respond. In situations where overwhelming needs cannot be met in full, difficult decisions must be made. In such circumstances, medical staff are often prompted to adopt a utilitarian approach: the greatest good must be achieved for the greatest number of people. Others adopt a different approach, and seek to intervene with a narrower focus.
Irrespective of the chosen framework, implicit in much of this decision-making is the overarching aim of saving lives. Consider, for example, the way in which crude mortality rates (CMR) and under 5 mortality rates (U5MR) are used to determine success or failure in crisis response. The preservation of life takes priority over other outcome measures. To palliate becomes tantamount to failure. This is reinforced by a system of humanitarian financing that focuses on outputs and demonstrable outcomes, often of the material kind.
The intention of saving lives is clearly a priority in such circumstances where lives can be saved. However, there is an urgent need to address gaps in our understanding and practice of end of life care where curative and lifesaving interventions fall short. We have identified the treatment of patients with HIV, TB, and complex non-communicable diseases, the victims of trauma and violence, paediatric patients with life-threatening congenital, genetic, and other conditions, and the effective management of pain, as priority issues.
Palliation: Reiterating an Intrinsic Good
The alleviation of suffering is clearly a moral good, as Lisa Fuller explains in Many Missions, One Voice (2003),
‘Demonstrating compassion for people and to alleviating their immediate suffering … are good in themselves, and so need not be evaluated primarily in terms of their good consequences.’
With this in mind, resources should be allocated to improve palliative care programming in MSF projects. Such resources should include the sensitization and training of staff, the development and application of norms and protocols for palliative care, and targeted work to ensure sustained access to tools and medicines, including advocacy to tackle regulatory barriers that prevent the importation and use of opioids in certain countries.
Reflection 2: The Perception of Pain
Pain management, particularly related to the use of opioids, is not consistently practised in MSF projects. There are several reasons for this, including regulatory limitations and a lack of confidence in opioid use by physicians and nursing staff. This is further exacerbated by judgements made on the severity of pain, particularly when dealing with paediatric patients. As an example, we recently asked national staff physicians about their perception of pain in young children in the intensive care unit of a large malnutrition hospital. In a second round, we asked the same question of mothers of the same children. The mothers consistently evaluated the pain to be more severe than the physician estimates. None of the children in question were receiving opioid pain relief despite some suffering from severe cases of malnutrition, malaria, and pneumonia. The reasons cited by physicians for not using opioids include legal issues, lack of training and experience, and the absence of naloxone in some settings.
MSF has an established track record of programmatic and advocacy interventions intended to redress inequity in global health. It is time that we asked serious questions of the neglect of palliative care and pain management in the places we work. Where next from here? As with others in the humanitarian community, we eagerly await further details of the ‘Aid when there is “nothing left to offer” study. In the meantime, MSF is in the process of developing the organization’s first paediatric palliative guidelines, which we hope will shed more light on this important topic.