Palliative Care in Humanitarian Situations – is it achievable?
Founder PALCHASE (Palliative Care in Humanitarian Aid Situations and Emergencies)
Acknowledging the Need
After many years of advocacy, the global palliative care community celebrated the unanimous and enthusiastically-supported passing of the World Health Assembly Resolution 67:19 of 24 May 2014 calling for “strengthening of palliative care as a component of comprehensive care throughout the life course”(1). This call included urging all governments to integrate palliative care into their health systems, provide relevant training and personnel, and ensure required resources including essential medicines and opioids. While all member states signed the Resolution, some are working actively to implement it, and palliative care is recognized as a human right (2), most countries have yet to even write national policies.
The Global Atlas of Palliative Care (Worldwide Hospice Palliative Care Alliance and WHO)(3) estimates around 40 million people would benefit from palliative care in the last year of life. International Children’s Palliative Care Network research estimates over 21 million children living with palliative care needs, most living in low and middle-income countries.(4) Even in high income contexts, there are many barriers to mainstreaming palliative care, including insufficient resources, programmes and personnel to provide palliative care for all. The provision of palliative care worldwide still has ways to go to become integrated into health care systems and be seen as an integral part of comprehensive health care.(5)
While we have estimates of the need for palliative care in relatively stable populations, we have no similar assessments in humanitarian situations. We can assume that where populations experiencing humanitarian emergencies remain in their home country, any pre-existing level of need for palliative care would persist or even increase under the additional strains of the emergency (depending on the humanitarian situation). There is a growing realization that it is precisely in these situations where there is a high level of physical and emotional trauma and death that palliative care is needed (6). Whether a humanitarian situation is caused by natural disaster, disease or conflict, those caught up in the disasters may have pre-existing conditions requiring palliative care such as cancer, HIV, cardiac failure or may develop conditions that would benefit from palliative care (i.e. Ebola and traumatic disabilities). Babies will continue to be born with congenital anomalies, metabolic conditions and cerebral palsy and others may receive a fresh diagnosis of cancer, heart disease or one of many other serious illnesses.
In longer-term situations such as refugee camps people have many different life-limiting and chronic conditions, and they should not be forgotten. With the huge and growing number of refugees and migrants changing the demographics of countries, estimates of the need for palliative care in those countries receiving refugees and migrants must also be reviewed.
A Lack of Guidelines
At present there are no specific guidelines for providing palliative care in humanitarian situations, nor is palliative care included in the Sphere Handbook, although there is an indication that it will be included in the next edition. For the present, existing guidelines and educational courses could be adapted for use.
There is, however, promising progress and an increasing number of activities aimed at changing the present situation. The World Health Organization Department of Service Delivery and Safety has set up a Palliative Care Community of Practice with a specific group looking at developing the necessary materials for humanitarian situations. The EAPC-European Association of Palliative Care is planning a Task Force to work on palliative care for refugees and migrants and there will be a discussion on this at the EAPC Conference in Madrid in May.
Concerned professionals from different world regions have joined together to form PALCHASE – Palliative Care in Humanitarian Aid Situations and Emergencies, which is establishing under the “umbrella” of the International Association for Hospice and Palliative Care. Members of PALCHASE from the Humanitarian Health Ethics Research Group in Canada are carrying out research on many fronts in this area; others actively advocating for those with life-limiting conditions in humanitarian situations; and the group is bringing together information on activities, and individuals interested in in this field. We are hearing from palliative care practitioners of their care for refugees and migrants in countries such as Jordan, Uganda and Germany. Reports are coming in from various groups looking at setting up programmes or planning future research.
A Global Cause
Global and regional palliative care associations are committed to supporting the PALCHASE initiative and have developed a joint statement for circulation in the near future. It will call on governments, the WHO, their member hospices, and palliative care programmes to reach out to care for those affected by humanitarian situations and calling for a basic palliative care package that would include opioids.
We can learn from past experiences. During the palliative care response to HIV/AIDS, anti-retrovirals were not readily available and mortality was high. More recent epidemics such as the Ebola Crisis in West Africa further underscored the importance and need for palliative care..
While much needs to be done, there is a real will to take palliative care into humanitarian situations through education, integration into existing humanitarian response organizations, advocacy, research and model development. This speaks to a recognition that palliative care is a humanitarian imperative.(7)
- Sixty-seventh World Health Assembly. Resolutions, Annexes, Documents. www.who.int/mediacentre/events/2014/wha67/en/
- L Gwyther, F Brennan, R Harding. Advancing Palliative Car as a Human Right. JPSM 2009; 38:767-774
- S. Connor and MC Sepulveda Bermedo. WHO and WPCA. Global Atlas of Palliative Care at the End of Life. 2012 www.thewhpca.org/
- S Connor; J Downing; J Marston. Estimating the Global Need for Palliative Care for Children: a cross-sectional analysis. JPSM Vol 53 No2 February 2017
- J Marston, L Delima, R Powell. Palliative Care in complex Humanitarian Crisis Responses. The Lancet. Vol 386. No 10007, P1940, 14 November 2015
- J Smith, T Aloudat. Palliative Care in Humanitarian Medicine. Palliative Medicine 31 (2): 99-101
- Dr Dainius Puras. UN Special Rapporteur on the Right to Health. 70th Session UN General Assembly 30 July 2015