Giving More Importance to Accessing End-of-life Care
By Puspita Hossain
Being a development professional in Bangladesh, I am used to visiting urban slums in Dhaka city, like Korail. But it was quite an extraordinary experience to see the project Momotamoyee Korail run by Bangabandhu Sheikh Mujib Medical University (BSMMU) with the help of Worldwide Hospice Palliative Care Alliance (WHPCA).
So, what is “palliative” care? It is not a very commonly used word, and mostly we think of it as “end-of life-care”. However, it is much more than just caring for someone who may not survive some incurable disease. WHO defines palliative care as “Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual”.
Recognizing the importance of such services, BRAC JPGSPH is expanding its field of work and is collaborating with partners in UK and Bangladesh in a project titled “Partnership to ensure the sustainability of a public health palliative care project in Bangladesh through community theatre.” It is a multi-disciplinary study and Dr. Malabika Sarker, Director of Research and the Centre of Excellence on the Science of Implementation and Scale-Up (SISU), at BRAC JPGSPH will be leading the research component of the project. A few days ago, I accompanied her to get acquainted with the ongoing project in Korail.
The Momotamoyee Korail centre established by BSMMU is located deep within the community as we walked through the serpentine alleys passing by several small shops. It was a two- room single-story building with a small yard in front. When we entered we could see that its services are provided to elderly patients’ in one room, and the other room was being prepared as a children’s playroom. After talking with the centre’s personnel, we began our community visit.
Palliative care involves relieving the patient from pain, providing psychosocial and spiritual aspects of care, offering a support system to both the patients and their families, using a team to address needs of patients, as well as bereavement counseling. Last but not least it is also applicable in the early phases of illness and includes investigations required to better understand and manage the situation. It is important to note that this has also been acknowledged as a basic human right for all.
Which brings me to my next point — there is an issue of access and availability to palliative care for people living in low- and middle-income (LMIC) countries. The WHO estimates that the highest proportion (78%) of adults who could benefit from palliative care live in LMIC countries. Yet the majority of proper palliative care facilities are found only in non-LMIC countries. Thus, the inequality here is highly apparent in respect to access to health system and their preparedness for palliative care. The situation is so dire that it has been referred to as a global health challenge.
Very few facilities in Bangladesh are equipped to provide palliative care, and only one which is affordable to all socioeconomic groups. One of them is the Centre for Palliative Care (CPC) which is a part of BSMMU in Shahbag and the project in Korail, which is also run by BSMMU. In the slum, the center has enrolled 120 patients who can avail doctors’ visits, physical and social support, medicine and access to nurses’ visits free of cost.
The work in this community is mostly executed by Palliative Care Assistants (PCA) who provide home-based care as well. The services are also provided to 25 children who are suffering from different physical and psychological issues. It was heartbreaking to see the suffering of the patients who require palliative care but at the same time it is also extraordinary as we saw the dedication and passion of the PCAs, doctors and everyone else involved.
At BSMMU, the doctors who are trained at palliative care are providing treatment and care for the patients, and they also visit the community-based center once a week. There are nine beds each for men and women and another section is being prepared for children. They also provide a 24-hour on hotline service for patients.
I was invited to Sussex, UK to attend the inception meeting of this project with Dr. Malabika Sarker where we represented BRAC JPGSPH and elaborated on our activities and research. The Principal Investigator (PI) of this project is Dr. Shahaduzzaman, and we were joined by partners from University of Sussex, University of York, University of Glasgow, The Worldwide Hospice Palliative Care Alliance (WHPCA), Palliative Medicine of National Cancer Centre, Singapore, BRAC, University of Liberal Arts Bangladesh (ULAB) and also BSMMU. Our main agenda was to get acquainted with each other and set up specific goals and activities for the upcoming project. It was decided that JPGSPH will look into the research aspect and the first step is an ethnographic study of the slum, which will further inform the next steps of this project.
What I saw and experienced made me realize that to tackle the issues related to palliative care in Bangladesh, we have to mainstream it into the health system and ensure that all socioeconomic groups are able to avail and afford it. One way can be to bring it under the umbrella of relevant programs on non-communicable disease as well as universal health coverage. As Dr. Malabika Sarker repeatedly emphasized, “Ensuring the sustainability of this current project can be a stepping stone towards scaling up and improving access and the quality of palliative care in Bangladesh for all.”
This blog was written by Puspita Hossain, Research Associate at BRAC JPGSPH.
