Community palliative care for older people in Bangladeshi slums

Categories: Community Engagement.

Claire Morris, WHPCA Senior Advocacy and Policy Fellow, has interviewed Professor Nezamuddin Ahmed, lead clinician of the BSMMU CPC about the project.

How did you feel when you found out that the Centre for Palliative Care had been invited to work with the WHPCA on the project for older people in two slums in Dhaka?

We felt good and a little excited also! We were happy particularly because the focus of the project is on ‘slums’ and ‘older people’. Working in a cutting edge university palliative care centre and talking about palliative care often used to create a feeling of incompleteness or discomfort. As if we had been pursuing a convenient approach of palliative care service ignoring the reality, the need of the community at large! 

Though we had been running a home care service and community volunteer training program since the inception of the CPC, we were not very happy with its limited activities and capacity. The other focus, older people, comes to us as a ‘specialisation program’ of our much generalized service which mostly incorporates cancer patients of any age group.

With this backdrop, this project comes as a way of developing ourselves in two areas of weaknesses where we would like to see ourselves strengthened and experienced.

How do you foresee the WHPCA/CPC helping older people in the slums in Bangladesh?

We are not sure yet, as it is only the beginning of a new idea in the reality of existing slums in Bangladesh. For example, whatever limited health care services are available in slums are often much prioritized areas like preventive health, maternal and child health issues etc.

Older people, probably the most vulnerable, dependent and neglected section of the community, and even more so in a slum reality, are only offered the back seats in a changing free market economy driven society and the health service.

Recently, the Bangladesh health service has been much praised in a series of articles in the Lancet for its innovative approach of involving community health workers in improving health care at the grass roots level. What is interesting is that nowhere in these articles or in the broader discussions on universal health coverage, palliative care as such, or the unique needs of older people, has been mentioned!

All we can foresee is that if the project becomes successful in these two areas, it is going to make a change in the prevailing norms and values in the slum environment, prioritizing the elderly slum dwellers as the focal point of attention.

Another unique innovative approach is recruiting dropped out high school girls who would otherwise possibly ended up as informal workers in garments factory and training them up as Palliative Care  Assistants (PCAs) through a structured training program. I am also very optimistic about creating an activist group in the slum itself amongst its dwellers who hopefully will carry the message of this project forward.

If this project can be implemented successfully, the change should have a major impact on the other sectors of the community. If the rights of older citizens can be established in these two model slums, or at least can be attempted to be established in a meaningful way in the two most grassroot levels of the society, the generated impact on the upper strata of the society will be automatically magnified following the general rule of societal development. 

How is the Bangladesh project with WHPCA going so far?

So far it is going well, but it is challenging too. It has been only three months that the tertiary health care institute suddenly finds itself coming out of its ivory tower institutional boundary and witnessing the extreme realty of life, the slums.

The slum inhabitants, always fearful of the high expenditures involved for health care services offered by these institutions are also skeptical about these initiatives. So, in short, the gap must be minimised and a trusted relationship has to be built before we can call it a successful project.

I called it challenging because every day we need to make number of modifications as we are moving forward. For example, a ninety year old lady cannot see and most likely she will have improved vision after a cataract operation. She has not got anyone to take her to the hospital and organise the eye test and operation etc. besides the financial issues.

Similarly, a number of elderly patients need medicines for their chronic breathlessness. You simply cannot move away saying that these issues do not fall within the purview of the project. This has necessitated in-country resource mobilisation, both monetary and in terms of manpower, including volunteers.

Our partnerships within the project have extended to organisations such as the Palliative Care Society of Bangladesh (PCSB), the Rotary Club Of Metropolitan Dhaka, and the Afzalunnessa Foundation.

How has the WHPCA/CPC project in Bangladesh helped your organisation so far?

In a very significant way I must say. The most important fact is that the project enabled an institution generated palliative care initiative to take a turn towards a community oriented program.

In the years 2014-15, CPC was able to offer its services to around 850 patients and families, whereas in the first three months of this new project, we enrolled more than 80 patients in two slums who really need support from us. In the coming months there will probably be many more who will be attended by the project team.

We will be training the eight Palliative Care Assistants for the next six months, both in hospital and also in their own community. We expect this to generate lasting awareness and impact, drawing more volunteers from the slums and rendering direct care service to the needy elderly people.

The university administration, which has started showing interest in such an innovative project, will hopefully be getting closer to these very root levels of its own community.

This will only add to the institution reputation. We will also consider the possibility of proposing the project sites for the community training programs for post-graduate students of the university.     

In your opinion, how could the WHPCA/CPC project in Bangladesh help your organisation and its work on palliative care in the future?

At present, we can think of at least two future possibilities of this project for our own organisation.

These two slum experiences will be part of our community training program for our future post-graduate trainees in Palliative Medicine. In our recently approved curriculum for MD in Palliative Medicine we have definite time allocated for community exposure. I am sure these challenging experiences will be very helpful for our future palliative medicine specialists to appreciate the reality in our country.

The second possibility is to develop some research programmes here. But the difficulty here is that we are quite naive in research in Palliative Medicine. I am sure all will appreciate that to survive and to develop in an academic institution like a university, we will have to develop a research program. I have a feeling that the slum programs, in the hands of a good researcher, can open up a new horizon in the palliative care research world. Unfortunately, we are lacking in this area.

How do you foresee your partnership with the WHPCA in the future?

We foresee our partnership with WHPCA to grow more and more on the basis of mutual respect and understanding.

We would also love to reciprocate the goodwill gestures that the WHPCA has shown to us. Say, for example, if the WHPCA is interested to gain a research based experience in these sort of projects or in a developing country, we would be very happy to cooperate.  

What more would you like to see WHPCA offer organisations such as yourself working in hospice and palliative care around the world?

From our perspective, we would suggest WHPCA to offer projects of a little longer duration, say for two to three years, which will have a better chance of sustainability, some mentorship and also some elements of research criterion inclusion.

We can foresee that this support from WHPCA, if properly implemented, can really make a difference to the total palliative care scenario of the country. This change is not only in the service provision, but also in the awareness creation and in the field of research at the ground level.

Congratulations on the new palliative care curricula. What does this mean for people living with life-limiting illness in Bangladesh?

I also take this opportunity to thank all our well-wishers and friends, both individuals and organisations who have supported palliative care initiatives in Bangladesh to come to this stage of development since 2005. 

This approval of Palliative Medicine as a specialty by the only medical university of the country is a recognition by academia that people living with life-limiting illness in Bangladesh also have a right to  an evidence based medical approach. Though this is going to take time, we believe that this recognition will always safeguard the issue of quality palliative care in Bangladesh.