These stories were shared with PallCHASE by Dr. Farzana Khan, in her role as president of Fasiuddin Khan Research Foundation (FKRF). In 2018, FKRF developed and implemented a community-based palliative care program for Rohingya refugees and the host population in the Cox’s Bazar District of Bangladesh. All patients provide permission for their stories to be shared.
When the 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. There are many other stories like this of 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.
Sanzida is a 15 year girl who has spastic quadriplegic cerebral palsy. Her illness causes her to have significant difficulties with movement; she can sit with support but is not able to walk. Her older brother carried her on his back for their entire journey from Myanmar to Bangladesh, a journey of 15 days in 2017.
She can easily understand when her family members talk to her, but she has trouble talking due to her muscle problems. Her sister shared that Sanzida loves good food, especially fish. She is very happy, and was laughing while was chatting with her mother, brother, and sister. The FKRF palliative care program was able to help Sanzida by starting a muscle relaxant medication and involving the physiotherapy team from Handicap International.
Mojidor is a 10-year old 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 and 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’. After the palliative care team started pain treatment, Mojidor was able to start to walk and even smile a little. Palliative care has improved the quality of Mojidor’s life and given much needed comfort to his family.
When we first met 70-year-old Maymuna, she did not know what to ask for to help, she only uttered, “Please help me”. She told us that she has been paralyzed for many years and that her son carried her on his back all the way to Bangladesh. The FKRF palliative care team provide regular home visits for Maymuna, supporting her basic care needs. The team’s regular visits provide emotional support for Maymuna and her family as well.
Monia is a 46-year-old woman with advanced breast cancer. She went to a local NGO-run hospital hoping to receive surgery, but she could not afford the cost of the procedure. She returned home to her tent. Monia was suffering from severe pain when the team met her.
The team guided her to a nearby clinic, hoping she could get treatment for her pain. She was given only paracetamol. Later, the team was able to procure stronger pain medication to help Monia.