What is the next frontier to making palliative care a reality for persons displaced by natural and man made disasters? This World Humanitarian Day, ehospice caught up with Joan Marston, founder of the PalCHASE network, to answer this question.
What prompted your desire to integrate palliative care into the humanitarian work landscape?
Watching the streams of humanity escaping from the horror of war in Syria was an AHA! moment and made me wonder whether there was any palliative care in humanitarian situations.
I realised there must be people with palliative care needs in these complex humanitarian emergencies and in more long-term situations such as refugee camps, where people may live for many years.
I happened to be in Salzburg at a palliative care meeting a short while afterwards and we had an informal meeting around this issue. Dr Eric Krakauer, who later on went to work for WHO, was part of that meeting. I sent a query around to a number of palliative care leaders and while a few individuals were providing some palliative care services — such as Dr Mohammed Bushnaq in Jordan and a wonderful nurse working with refugees in Uganda — we could not discover any formal programme to introduce palliative care into humanitarian situations coming out of the palliative care community.
We also spoke to humanitarian groups such as MSF with Diederick Lohman, who was with Human Rights Watch, and found that they all accepted that palliative care should be part of their work. What we also found was an interest in this field from researchers in Humanitarian Health Ethics led by Dr Lisa Schwartz at McGill and McMaster Universities in Canada and a group in Australia and the Asia -pacific region, led by Dr Brett Sutton.
This led to the establishment of PalCHASE – Palliative Care in Humanitarian Aid Situations and Emergencies (generously hosted by IAHPC) and a number of others interested in this area, joining together to see how we could assess the situation and also advocate for palliative care to be integrated into the humanitarian health response.
Of course my main concern was and remains what is happening to the children! Early on I was fortunate enough to be invited to speak on this at a conference of the Syrian-American Medical Association in Istanbul and the hope is that all the humanitarian health response organisations will see the need for palliative care to be included as part of their incredible work.
When you think of the complexities of humanitarian situations – natural and man made disasters, infectious diseases such as Ebola – where do you see the lowest hanging fruit for palliative care integration?
We have seen that implementation in the more established situations ie. longer-term refugee camps such as for the Rohingya refugees in Bangladesh and those in Uganda is the low-hanging fruit. However even there, many challenges and complexities remain.
The excellent rapid review of palliative care needs carried out by Dr Megan Doherty and Dr Farzana Khan in Cox’s Bazaar in Bangladesh for PalCHASE identified specific palliative care needs. Dr Farzana Khan has been inspirational in her work in training professionals, training and mentoring palliative care assistants, working with WHO and other INGOs also working in the camps, and overseeing the integration there.
Led by Dr Eric Krakauer, the WHO has brought out “Integrating palliative care and symptom relief into the response to humanitarian emergencies and crises”: A WHO Guide. We are also very excited to see that Medicin Sans Frontieres has recognized the importance of palliative care as part of their heroic work in humanitarian situations and the Sphere Handbook has for the first time a palliative care standard included in their latest edition (standard 2.7).
This is used widely by humanitarian agencies and is translated into a number of languages. Dr Elisha Waldman and Dr Marcia Glass are editing a soon-to-be published Handbook to be published by Oxford University Press.
In Africa, we have learned so much from providing palliative care in situations such as AIDS, unrest, migration and extreme poverty. Many of these principles can then be built upon in our response to humanitarian situations.
What do you perceive the next frontier to be in mainstreaming palliative care into complex humanitarian emergencies?
I believe the next frontier is ensuring the palliative care community integrates humanitarian care into their programmes and training.
There is a real interest from researchers and the results of the research need to be implemented in practice. We have focussed on others integrating palliative care – and we need to see ourselves as full partners prepared to work alongside them with our expertise. There are palliative care practitioners prepared to work in these situations but we still need to find a sympathetic funder or funders who will support this work. Perhaps that is our greatest challenge…
Photo caption: Arrested refugees-immigrants in Fylakio detention center, Evros, Greece. Licensed through Wikimedia Commons.