In humanitarian crisis situations, individuals with serious illnesses are often forgotten. The specialised care which individuals with life-threatening illnesses require is unavailable during and following the onset of humanitarian emergencies. The assessment, design, and delivery of palliative care services in humanitarian crisis situations is a relatively new field. Recently, in the Lancet Commission on Palliative Care and Pain Relief, an Essential Package of Palliative Care and Pain Relief was proposed which includes the tools for providing essential palliative care interventions.
The International Organization for Migration estimates that 624,000 Rohingya people have been forcibly displaced from Rakhine State in Myanmar into the Cox’s Bazar District of Bangladesh since Aug 25, 2017. There is very limited information about the burden of chronic diseases and palliative care needs of these refugees.
From 19 – 28 November 2017, we conducted a rapid needs assessment of palliative care needs in the Rohingya refugee settlements in Bangladesh. Our goals were to assess the burden of pain, suffering, and severe distress for those refugees living with life-threatening illnesses.
Community volunteers were trained to conduct interviews with men and women with life-threatening illnesses and their caregivers. A total of 304 individuals were interviewed including 147 individuals with serious illnesses and 157 caregivers. The interviews were carried out in 4 settlement areas, these being Kutupalong, Balukhali, Tenkhali and Jamtoli.
We also conducted interviews with managers at health facilities to understand the existing medical services available for patients with life-threatening illnesses.
Most (88%) of those who were interviewed were had arrived in Bangladesh in the past 3 months. The average age of individuals with serious illness was 47 years old and 34 years old for caregivers.
The most common serious health conditions reported were:
- 66% – Physical Disabilities (including stroke, spinal cord injuries, and cerebral palsy)
- 24% – Tuberculosis
- 9% – Cancer
- 2% – HIV/AIDS
- 3% – Other Conditions (including chronic respiratory or kidney disease)
66% of the respondents stated that they were not able to get the medication they needed. The most common challenges to getting medical care were:
- 56% lack of money
- 18% treatment for their condition was not available at local health facilities
- 3% transportation to a health facility was not possible (mainly due to financial problems)
Responses when asked, what are your greatest needs?
- 97% Medication
- 94% Money
- 76% Food
- 45% Pain Relief
- 44% Someone to help me (provide care for me)
- 24% Help with sadness or depression
PaTreatment was very limited and pain was frequently moderate to severe and there was limited improvement with treatment. Figure 1 shows the change in pain intensity with treatment (see pictures above). When asked about the types of pain treatments they received, 56% of patients reported that they hadn’t received any treatment and 32% stated that they took paracetamol or non-steroidal anti-inflammatories (9%). There were no patients who had received strong pain medications such as opioids. Only one health facility reported having strong opioids available and there were very few opioids available in retail pharmacies near the settlements.
There is a significant need for palliative care services in Rohingya refugees in Bangladesh. There is a lack of adequate pain treatments, especially opioids, and many patients require support for their basic needs, including food and money. Community based palliative care programs, may be a cost-effective way to reduce the burden of preventable suffering in individuals with life-threatening illnesses in a humanitarian crisis situation.
This work was a collaboration of World Child Cancer, Fasiuddin Khan Research Foundation, PALCHASE and was supported with assistance from OBAT Helpers.