Setting the standard: Bringing palliative care to the Rohingya refugees

Today, we launch a new series about palliative care in the context of humanitarian crises where we shall look at the implications of providing palliative care for migrants, refugees and people who have fled war-torn countries and places of conflict and how the hospice and palliative care community can offer appropriate support.

Cox’s Bazar in Bangladesh is home to the largest refugee camp in the world. It’s here that Dr Megan Doherty and Dr Farzana Khan lead a community-based service that provides basic palliative care for Rohingya refugees  – one of very few palliative care services available in a humanitarian situation.

In 2017, we met Mojibor, a 10-year-old Rohingya boy with bone cancer, he was lying on a mat in his tent, unable to move or walk because of his pain. In the past, Mojibor was a typical football-loving boy, and his nickname was ‘bhuissya’, meaning ‘buffalo’. We started pain treatment, and now Mojibor can walk and even smiles a little. Palliative care has improved the quality of Mojibor’s life and given much needed comfort to his family.

Dr Megan Doherty conducts a home visit with a young patient of the palliative care programme.

In 2017, the rapid influx of more than 900,000 Rohingya refugees from Myanmar into neighbouring Bangladesh posed many challenges to delivering health care. When the refugee crisis started, we wanted to understand the situation for individuals with palliative care needs. We conducted a Needs Assessment, which we published in early 2018, which showed that Mojibor’s story was not unique, and the majority of individuals with serious or life-limiting conditions had been largely excluded from the humanitarian healthcare response. Families were often watching their loved ones suffer in severe distress, unaware of how to get help.

Based on these findings, with our local palliative care organisation (Fasiuddin Khan Research Foundation), we developed a community-based palliative care project to provide basic palliative care for Rohingya refugees. The project uses trained community health workers to provide basic palliative care support, combined with supervision and support from a palliative care physician to develop treatment plans. The team visits patients in their homes, ensuring they get the medications and equipment that they need to live with greater quality of life, easing their burden of avoidable pain and suffering.

Palliative care assistants.

The community health workers – called palliative care assistants (PCAs) – also provide basic nursing care, and monitor symptoms. Using a community-based approach to deliver palliative care may reduce pressure from the main health centres by supporting patients to remain at home. In our needs assessment, we found that patients requiring palliative care make visits health centres where they end up being turned away due to lack of resources and knowledge about how to treat their condition.  Ours is one of very few palliative care services available in a humanitarian situation which is described in more detail in this video from The New Humanitarian.

Thus far, our team has supported more than 1,000 patients with a variety of serious illnesses, including cancer, paralysis, cerebral palsy, tuberculosis, HIV, and other chronic diseases. Our team has developed a secure system to ensure that morphine and other essential symptom control medications are available for patients in their homes. We document the stories of many of those whom we have encountered here.

Development of minimum standards for palliative care for Rohingya refugees

We have found that providing essential medications, supplies and supports for patients facing chronic or terminal conditions has dramatically improved their quality of life, and our goal is to expand our services to reach many more individuals. Recently, we were approached by the World Health Organization to develop a set of minimum standards for the delivery of palliative care for Rohingya refugees. Through a consensus development process with input from PalCHASE (Palliative Care in Humanitarian Aid Situations and Emergencies) and other experts, we were able to develop standards which we are now working on to implement comprehensively for the refugee camps, with the support of the International Organization on Migration (IOM).

Dr Farzana Khan and Dr Megan Doherty with palliative care assistants visit patients in the Cox’s Bazaar Refugee camp in Bangladesh.

Who we are and where we’re from

Our project is led by Drs Farzana Khan and Megan Doherty, two passionate palliative care physicians with extensive experience providing in Bangladesh. We are partnered with Palliative Care in Humanitarian Aid Situations and Emergencies, a global network of clinicians and researchers who want to raise awareness about the need for palliative care in humanitarian emergencies. If you want to support our project, visit our Global Giving webpage, where we are raising funds to support this ongoing work.

 

 

 

Links and resources

You can read previously published posts on ‘Palliative Care and Humanitarian Crises’ on the EAPC blog. Next week: Dr Marcia Glass and Dr Elisha Waldman tell the background story to A Field Guide for Palliative Care in Humanitarian Crises, the first ever book to provide guidance for clinicians not formally trained in palliative care on how to incorporate its principles into their work in crisis situations.

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