Paediatric Palliative Care in Kenya

The 6th KEHPCA National Palliative Care Conference 2023 was held on 15 – 17 November 2023. The theme was Palliative Care Through the Inclusivity Lens. Several presentations were made during the workshops and one of them was made by Dr Esther Nafula a Palliative Care Specialist and Head of the Pain and Palliative Care Unit, at Kenyatta National Hospital in Nairobi. She is also a Board Member of The International Children’s Palliative Care Network (ICPCN). Her presentation focused on Paediatric Palliative Care (PPC) in Kenya.

According to the Kenya National Bureau of Statistics (KNBS), Kenya has a population of population of 53.01 million people and the number of people under the age of 18 is 24.4 million. The population under the age of 5 is about 7 million. Children who need palliative care in Kenya do not have access to quality care.

The infant mortality rate is at 37.2 per 1000 live births. Most of the infant deaths is due to birth asphyxia. Children’s cause of death under 5 deaths are mainly due to infectious diseases.

Conditions requiring palliative care among children in Kenya

Hospice and palliative care services have been available in Kenya for about three decades. The first hospice to be established was Nairobi Hospice in 1990. This was followed by Nyeri Hospice in 1995, and Coast Hospice in 2001, and now we have more than 100 facilities that provide palliative care services in different capacities across the country. There are only three facilities that offer specialised PPC in Kenya. That is Kenyatta National Hospital, Kimbilio Hospice and Moi Teaching and Referral Hospital.

“When children are sent to the Community Health Units, they are referred to Kenyatta National Hospital as a special case because they need palliative care services. There is no healthcare practitioner in Kenya who is dedicated to PPC. They are trained to treat and handle adults and they just find their way in PPC. In the Kenya Palliative Care Policy, no specific section focuses on Children’s Palliative Care services (CPC).” Dr. Esther Nafula.

There is limited staff in paediatric oncology and PPC, limited staff education and training opportunities, and no formal palliative care plan. The cancer registry at National level is purely for adult cancers. None is dedicated to children except at Moi Teaching and Referral Hospital but Kenyatta National Hospital will introduce a paediatric cancer registry from January 2024 and there is also poor data collection.

Access to treatment and essential medicine is still challenging. Morphine is not available at lower-level facilities. There are shortages and stock outs. There are some medical tests and medicine that is not covered in the National Health Insurance Fund. There is limited funding for palliative care and this was exacerbated by the COVID-19 pandemic because palliative care is donor funded.

Formulation of morphine for children is available but there is still a need for access to essential medicine. We need to include PPC in public health systems and prioritise person centred care for PPC and include it in the Universal Health Coverage (UHC) agenda. Finally, we need to address inequity in access to palliative care not forgetting PPC.