In the Korail urban slum in Dhaka, Bangladesh, there are eight young, passionate and intelligent women who are driving forward the compassionate community approach in their own neighbourhood.
'Compassionate Korail', a joint project between the Centre for Palliative Care at Bangabandhu Sheikh Mujib Medical University (BSMMU), the Community Based Organisation in Korail slum and the Worldwide Hospice Palliative Care Alliance (WHPCA) has been running since, 2015 focussed on building a compassionate community to support the needs of older people and their families in the slum.
Eight Palliative Care Assistants (PCAs) were recruited from their home community of Korail, through approaching schools and the local leadership.
The selected PCAs were given six months' training at the Centre for Palliative Care and tasked with finding and supporting bedridden older and isolated patients. They receive a salary and are supported by the medical team at CPC with regular training and mentorship.
WHPCA Advocacy Director, Claire Morris, was fortunate to get a chance to talk to these inspiring young women to learn about their experiences and feelings working on this project. Read their interview below.
What is your experience of getting involved with the project and what do you think about palliative care?
I think palliative care is for incurable patients to live and die with comfort. It is not only about the physical but the psychological problems too – we can take care of them all. The family also gets this service. And the neighbours don't ignore the patient anymore because they see us talking to the patients.
I didn't know anything about palliative care before, so I went to the training. At first I didn't like it. I had to study and I didn't like the smell. But after the training, I realised that this was something else and now I have no language to explain palliative care. I have realised it is not only for the patients, but for me too, and my family.
First of all I was a volunteer, I was very satisfied about helping older people at the end of life so I applied to be a PCA, and I like what I give to this slum where I live.
I had completed the HSC and the school teacher called me to tell me there was an opportunity. I didn't know about palliative care.
I was uncertain, but I went to the interview and after a few days I found out I was selected.
I was told I would be caring for older people in their homes and I took six months training – taking care of wounds and cancer patients.
I was taught how to care for bedridden patients. I learned how to do oral care and talk to family members and be careful that patients and families understood me. I have to understand what patients feel and need.
What was it like offering support and help to people in their community at the beginning?
After six months' training, we started field training. We went door to door and we found many patients who were bedridden with no one to help them.
First of all, they didn't believe us. They were annoyed. Most people come here and don't do anything. They chased us with spatulas!
How did you work to change people's attitudes?
We visit them regularly and doctors visit too so they realise we are helping. They gradually trust us and believe that we can do something for them.
If we don't go one day, they say: 'Why didn't you come?' They think of us as family members.
What support do the the PCAs offer the people they are working with in the community?
I visited a paralysed patient who was 61 years old and I helped her to exercise, gave her medicine and did her hair.
My first duty is to look after them; I am less worried when I am looking after others.
Palliative care is not just for cancer, but for old age too (among other issues). (Elderly people) don't have cancer but they have pain and breathlessness which we can take care of.
What more do the palliative care assistants need?
I don't want anything for myself, but sometimes we need more things for the patients
By joining the Centre for Palliative Care, I have been able to help people.
How do you feel about the fact that none of the Palliative Care Assistants are men?
Seeing our work, men are getting more interested but I'm not sure how much work they will do!
I think a male PCA could be good – it could help working at night and attending the male patients.
I think one male PCA applied but he wasn't selected.
How do you see your futures?
I want to build a compassionate community without an organisation. It should come from family and neighbours.
I don't know whether I will live for the next 10 years, but if I do I want to provide palliative care knowledge to my community and provide them with palliative care facilities.
I don't want anyone to be neglected.
I think palliative care can be provided every time and everywhere. If I get married and have to go back to my village, at least I can take my skills with me.
If I have to go to another place with no equipment and I found someone who needed me, I know how to boil water and add salt with clean cotton balls; I don't need gauze to clean wounds. And I can help with pain using hot compresses or exercises.
The Compassionate Korail project is an innovative model of care in an urban slum setting in the Asia-Pacific region building on the assets of a community – not least compassion – and supported by a medical team.
Congratulations to the work of the whole CPC team in delivering this project and the inspiration and commitment of the Palliative Care Assistants.