In Narayanganj, Bangladesh, a project is underway to build a compassionate community named ‘Compassionate Narayanganj’.
This project aims to provide a model of care in one Bangladesh city which shows how compassionate palliative care alleviates suffering, positively impacts people’s quality of life and is a cost effective and ethical imperative of health systems.
It is crucial for achieving Universal Health Coverage – one of the Sustainable Development Goals agreed by all governments in 2015.
Here, we share a wonderful story of two of the project’s beneficiaries.
Sharjahan (32) and Rajon (26) are brothers living in Narayanganj. Both suffer from Erb’s Muscular Dystrophy, a rare progressive genetic disorder, characterized by atrophy and weakness of the muscles of the hips and shoulders.
Their eldest brother died at a very early age from the same disease.
The symptoms of their disease meant that life was becoming a burden to them. Since their childhood, their lives were limited to their home, which had only one room with very minor ventilation and almost no furniture.
Their mother cooks rice and vegetables in the morning, feeds Sharjahan and Rajon and helps them in going to the toilet, then goes out to her employment as a domestic worker. She saves the lunch provided by her employer to share with her sons.
The two brothers are the only company for each other for most of day, as their mother is the only earning member of their family. They had even lost interest in talking to each other.
When they were first referred to our palliative care team, we were not readily accepted, as they knew that the disease had no cure. They didn’t even talk to the palliative care team at first.
After repeated visits, a good rapport was built between our team and the brothers. But we still felt that something was missing, and that a lot more could be done.
One day during our visit, we found that despite regular physiotherapy they were gradually becoming weaker as the disease progressed.
The more the disease was advancing, the more they were losing their confidence, and developing severe anhedonia, a lack of interest in things they would normally enjoy doing. By speaking to them, we came to know that they dreamt of having some company, like a friend which they never had.
We decided to try some alternative strategies to help improve their mental wellbeing. We presented them with some painting materials and helped them to draw using their mouth or – with assistance – by hand.
Amazingly, the plan worked and we could see their beautiful smiles for the first time, the smile of revealing self-confidence. Even though it was a small thing, they really found something else to think about, an enjoyable activity, and a feeling of having company by their side.
‘Compassionate Narayanganj’ is a pilot project which includes a unique collaboration between Bangabandhu Sheikh Mujib Medical University (BSMMU), Worldwide Hospice & Palliative Care Alliance (WHPCA) and Narayanganj City Corporation (NCC). This project is funded by UK Aid Direct.