Taslim was a 4-year old girl in Cox’s Bazar refugee camp, Bangladesh, suffering from eye cancer. When her cancer first appeared, Taslim had surgery to remove her tumour. Initially, it looked like this may have cured her. But just two months later, Taslim developed headaches and pain. Sadly, the cancer had returned and spread.
When our team met Taslim, she was in severe pain. She desperately needed palliative care, including medicine to relieve her pain. But there was no morphine – the best treatment for her pain – available at the local health facility. In desperation, Taslim’s father took her to a distant government hospital. Like the health facility, the hospital could not provide adequate pain relief.
Tragically, Taslim died at this hospital only days later without the right care and support that she and her family so urgently needed.
Taslim’s story is not unique. We hear many stories like this of children and adults around the world facing humanitarian emergencies – children and adults who cannot be relieved of the burden of suffering from disease or trauma because of a lack of medicine or supplies, or the absence of health workers who know what care to provide; and families who watch their loved ones in severe distress unaware of how they can help.
We know that large numbers of people facing chronic or life-threatening illness go unreached by humanitarian health systems; and many of those who could have been provided essential palliative care and pain relief will die, unreported and uncounted. The imperative to save lives in humanitarian emergencies has often meant that the suffering of those who cannot be cured is neglected or forgotten. This is the distressing reality in most humanitarian crises. The refugee crisis happening right now in Bangladesh is no exception.
Palliative care enables patients and their families facing life-threatening illness, with physical, emotional, social or spiritual distress, to be supported in their journey. They can access the right medicines, equipment, and doctors, nurses, social workers and others who are trained in how to help. Solutions exist that we know can aid children and adults to live with greater quality of life, eased from the burden of avoidable pain and suffering.
Over in another part of the refugee camp, Mojidor is a 10-year old Rohingya boy with bone cancer. When he was diagnosed at the camp field hospital, Mojidor and his mother cried all night fearing he would soon die. Mojidor has two little sisters. His father is missing. We found Mojidor in a tent lying on a mat, unable to move or walk because of his pain. In the past, Mojidor was a typical football-loving boy. His nickname was ‘bhuissya’ meaning ‘buffalo’. We started pain treatment, and now Mojidor can walk and even smiles a little. Palliative care has improved the quality of Mojidor’s life and given much needed comfort to his family.
Even when there is no cure and it seems like there is little hope, for patients like Mojidor and Taslim there is so much that can and should be done. This imperative is echoed in The Lancet Commission on Global Access to Palliative Care and Pain Relief and the stark statistic that 25.5 million people die with serious health-related suffering that requires palliative care. That a significant health response in Bangladesh has been mobilized in this crisis is commendable.
That unrelieved pain and suffering remain a common occurrence should be an incentive to action and a reminder of the enormous benefit palliative approaches can bring. The Government of Bangladesh, humanitarian agencies and local health workers have a moral and health imperative to invest in policies and programmes that ensure no child or adult lives or dies in severe distress in Cox’s Bazar.
Relieving the burden of pain, suffering and anguish associated with disease and illness must be a priority in this humanitarian crisis.
In November 2017, a palliative care rapid situational analysis was conducted amongst Rohingya refugees living in temporary settlements in Cox’s Bazar. This the first assessment of palliative care conducted during an unfolding humanitarian crisis.