Building Bangladesh’s palliative care system from paediatric wards to inner city slums
It wasn’t until 2012 when Lailatul found herself on a placement in a palliative nursing department of the hospital she still works at in Dhaka, that she first encountered this type of care.
“I found it different from every other department I had ever worked in,” Lailatul says.
After completing the placement, Lailatul went on to attain a certificate in palliative care nursing and, realising the positive difference she could make by reducing suffering, she embarked on a masters programme too. She also has a degree in palliative nursing from Singapore.
She began delivering a palliative care assistant course in the department at the hospital and she was instrumental in setting up a community palliative care programme with the help of the World Hospice Palliative Care Alliance.
Since that point Lailatul has made it her job to extend the principles and practice of palliative care as widely as she can. Groups that she trains include community-based health care workers, family home carers and hospital staff. In addition to her work locally she is now seen as an education leader and consequently provides training far and wide. This includes, for example, the medical team at the Rohingya Refugee Camp in Bangladesh. In addition to the training she provides and coordinates for a vast range of personnel both within and beyond the hospital, she also delivers direct care to the local community.
Recently, Lailatul was delighted to be invited to teach on the paediatric cancer care unit, as they now recognise the palliative care needs of children too.
Through her contribution to the recent book Home-based Palliative Care: A manual for nurses, her visit to the Institute of Palliative Medicine Programme in Kerala, and numerous international conferences, Lailatul has extended her network and sphere of influence.
What drives you to make a difference?
Delivering training is a means to an end for Lailatul. Her sharp focus is on increasing the provision of palliative care to as many people as she can in her native Bangladesh, where currently it is only really offered in the capital Dhaka.
Continuing her clinical practice provides Lailatul with a constant reminder of the benefits palliative care can provide, and the need to extend it more widely.
“When I sit in front of patients, I find people who are suffering a lot and I can do something to reduce their suffering. That’s what matters most to me and is why I got involved in palliative care.
An illness or suffering could strike me at any time. If I don’t care about people who are suffering now, I won’t be in a position to ask for care in my society. I have to do my best to make care available to as many people as possible.”
How do we see the art and science of nursing expressed?
“The holistic approach is what marks out palliative care nursing,” Lailatul says.
“I think palliative nursing is different in the way we see patients and communicate with them. We address not only the physical issues but also the psycho-social. Other nurses in Bangladesh only address the physical care.”
With limited resources – of both staff and medicine – Lailatul is very aware of the need to develop efficient ways of spreading good palliative care practice as widely as possible.
“Other nurses get excited when I tell them about palliative care and I feel happy when I can share my knowledge with them knowing they will apply it to their patients. I only get to support four or five patients a day, but by sharing knowledge I know we can help to relieve the pain and suffering of many more people.”
Reaching out to nursing colleagues isn’t restricted to knowledge sharing. Lailatul is open and honest about the support she receives from her team when work becomes really demanding.
“I face lots of challenges in my work every day. I see lots of people dying and sometimes I do feel burnt out. We have to keep going and that’s where teamwork is so important. When we feel burned out, we share our feelings and that can really help.”
How can nurses strengthen their leadership and impact?
Despite Lailatul’s best efforts, there is still a huge amount of work to be done to increase training and education and develop a nursing workforce familiar with and skilled in palliative care. Looking ahead, Lailatul still sees this as the best route for nurses to make a difference and for patients to appreciate the quality of care.
She says: “I hope that all the local nurses will have some sort of end of life care training and all the nurses in Bangladesh will learn about palliative care – or at least find out what it is and how to alleviate patient suffering. Currently, there is no masters or diploma course in end of life care in Bangladesh. I would love to have a course here so that any nurse who is interested in end of life and palliative care can do it.”
With only isolated pockets of palliative care provision, those professionals have a heavy workload. To try and maximise the impact of their work and provide them with professional support, Lailatul has been instrumental in starting up a palliative care nursing association which now has 60 members.
“We have a small network I am involved in some nursing organisations and I share information about palliative care courses through those,” Lailatul tells us.
Lailatul emanates real energy and tenacity for her work and fully recognises the challenge that palliative care poses for many of her colleagues. She takes a long term view of things and is very determined and motivated to continue to raise awareness and reach many more people.