In 2016, we started plans to develop the Korail Slum Children’s Palliative Care Project under the umbrella of the Compassionate Korail project. Compassionate Korail is an innovative model of care in an urban slum setting building on the assets of a community – not least compassion – and supported by a medical team. Palliative care services in the urban slum communities have not yet been developed, and this project is hoping to begin to address this enormous need, and to provide a model for future scale up and replication.
In a Community Based Palliative Care, there is Involvement of the people in a community to address the palliative care issues which they see in their own community. This is a powerful approach which builds on the strength and knowledge of the community.
Our vision was to build a self-sustaining compassionate community model of palliative care for children with life-limiting conditions in the Korail slum, building on the Compassionate Korail model. The goal was to improve the quality of life for children with life-limiting conditions and their families.
Raising Awareness about Palliative Care
Our team conducted sensitization session to raise awareness, these sessions included sharing about what is palliative care. The goal of these sessions was to engage the local community as partners in the palliative care project. The importance of volunteers and community ownership are critical to achieving a sustainability community rooted palliative care program.
Members of our team and local volunteers continue to raise awareness as part of the ongoing outreach activities at local schools and community events. Training is provided to the community leaders to empower them to become advocates for palliative care.
Palliative care is provided in the patient’s home using trained community health workers (called palliative care assistants), supervised by nurses and doctors. Each patient and family is assigned a primary palliative care assistant who provides regular home care and keeps in touch with patients by phone. Doctors and nurses visit on a regular basis and are available for emergency situations.
Observed Benefits of a Community Based Palliative Care Project
Quality of Life: This project has made a substantial difference to the quality of life for children and families. Our team’s medical care has made children more comfortable and able to participate in activities and play. Many children have received specialised seating and mobility equipment provided by a local NGO. Families feel supported in the care of their child and appreciate our team’s focus on the whole family’s wellbeing.
Empowering Communities: Providing palliative care in the community has built the capacity of the community to support its own members. Many times, individuals with serious illnesses are sent home from hospital and told “there is nothing more that can be done,” but using a community approach has allowed us to show that there is always something more that can be done and has empowered the Korail community to do it. Through community engagement with key stakeholders we have been able to improve coordination of care and focus on the child and family’s needs.
Financial Benefits: We have observed that bringing health professionals into the home can reduce the burden on health institutions, and the cost to provide this type of care is relatively low. Providing palliative care, especially when it is done early in the illness trajectory, can prevent families from exhausting their limited financial resources on unnecessary hospital admissions and use of health services, as they are supported to stay and home and receive care in their own community. Previous studies in Bangladesh have found the catastrophic health expenditure is the leading reason why families fall back into extreme poverty.
Patient and Family Preference: When facing serious illness, most children and families will prefer to stay at home and will choose this option if they have the support that they need. Children can spend time with their friends and family and families can be kept together. Parents are able to continue working to support their family.
Future Plans: We are seeking funding to expand this project, as there are many more children in the Korail Slum who we have identified who could benefit from palliative care.
This project is currently funded by World Child Cancer and the Worldwide Hospice Palliative Care Alliance and is implemented through a partnership with the Centre for Palliative Care at Bangabandhu Sheikh Mujib Medical University (BSMMU).
Should you wish to become involved in supporting this project, you can contact Dr. Megan Doherty at firstname.lastname@example.org