Providing necessary medical care is essential to any humanitarian response. For the approximately 745,000 Rohingya refugees in Cox’s Bazar, Bangladesh, home to the largest refugee camp in the world, accessing high-quality medical care is often difficult. Palliative care, which is medical treatment for those with chronic or life-threatening illnesses, is often overlooked in humanitarian crises. Two organizations, PalCHASE (Palliative Care in Humanitarian Aid Situations and Emergencies) and the Fasiuddin Khan Research Foundation, are pioneering this treatment for Rohingya refugees.

The purpose of humanitarian health work is to relieve suffering and save lives; however, those who are chronically and perhaps terminally ill are often given less attention than those with more easily treatable ailments.

Who Needs Palliative Care?

Palliative care improves the quality of life for children and adults who have chronic or life-threatening illnesses. Treatment focuses on physical, emotional, social and/or spiritual symptoms, and requires ongoing interaction between the patient and health provider. This care is sometimes provided alongside other therapies and treatments, including chemotherapy for cancer patients.

A 2018 study in the Journal of Pain and Symptom Management on life-threatening illness in Cox’s Bazar found that the most common life-threatening illnesses were tuberculosis, cancer and HIV/AIDS.

They also estimated that 73 percent of those with life-threatening illness experience pain. Approximately half received no pain relief and a majority receive very little pain relief. Other common symptoms include insomnia, cough, anorexia and dyspnea.

The Challenges

While medical supplies are generally available to treat these symptoms, they are often unaffordable, particularly for refugees, and more than 60 percent of patients had to stop taking medications because they were no longer able to afford them.

In addition to medication, palliative care requires a caregiver, and caregivers in Cox’s Bazar are normally family members. Approximately 94 percent of caregivers have no training, and providing hours of daily assistance bathing, feeding, giving medications, etc. is a physically and financially demanding role. Providing this treatment for Rohingya refugees, therefore, is often a significant burden on families, particularly if they have to do a lot of the work themselves.

Moreover, unique challenges arise when children need extensive treatment, as they need extra support and often spend more time in the hospital, separated from family and friends. This increases psychological stress and caregivers are in need of even more training to know how to properly care for children with chronic or life-threatening illnesses.

A Need that Should not be Overlooked

In spite of this need, palliative care for Rohingya refugees is not a priority in the aid sector’s response plan. PalCHASE (Palliative Care in Humanitarian Aid Situations and Emergencies), an organization based in the UK, was created in response to the general lack of palliative care in disaster and conflict responses.

Co-founder Joan Marston stated that palliative care is “really about the dignity of the individual,” noting that already “there’s enough indignity within these humanitarian situations.” The goal of PalCHASE is to get more emergency response plans to incorporate palliative care, hoping that the treatment will cease being an afterthought in the humanitarian response.

The Fasiuddin Khan Research Foundation

The Fasiuddin Khan Research Foundation is Bangladesh-based and is working directly on providing palliative care for Rohingya refugees. It is the first concrete palliative care program with a humanitarian response.

Founder Farzana Khan, despite being unable to secure long-term funding, is on the ground with a team of three addressing the distinct needs in the Rohingya refugee camps. Khan spent 20 years providing palliative care in Bangladesh prior to focusing on the Rohingya refugees, noting that her “core approach” is “dignity and respect.”

Early in their response, Khan’s researchers estimated that thousands of people in the refugee camps may be in need of palliative care and were not currently getting help. To remedy this, it is essential to make this treatment more easily accessible and ensure that refugees know when to seek medical treatment and care.

Changed Lives

Sanjida, a 16-year-old refugee living with untreated meningitis, which is causing increased paralysis, has received palliative care, thanks to Khan and her team. Her sister and caregiver, Khaleda, noted that she can now do more by herself, can call for assistance more easily and just generally seems happier.

Another patient, 10-year-old Mujibur Rahman, who suffers from bone cancer, was struggling to walk and ended up confined to a wheelchair. Dedicated treatment helped manage his pain and within two months helped him walk again.

Since the Rohingya crisis began in 2017, Khan’s team has reached approximately 1,000 patients, including Sanjida and Mujibur. While funding continues to be a problem, Khan hopes that organizations’ successes will help secure more financial support so that they can continue to provide support for Rohingya refugees.

Looking Forward

Regardless, the Fasiuddin Khan Research Foundation should become a model for other humanitarian response teams looking to focus on palliative care. In addition to the Rohingya, other refugees around the world, as well as those who are impoverished, are in need of better treatment in the case of life-threatening or chronic illness. The work of PalCHASE will hopefully increase knowledge about the need for palliative care and encourage humanitarian leaders to consider it more seriously.

– Sara Olk

Photo: Flickr