The Kenya Hospices and Palliative Care Association (KEHPCA) held the 6th KEHPCA National Palliative Care Conference with the theme Palliative Care Through the Inclusivity Lens from 15 – 17 November 2023. On Wednesday 15th November some workshops were held to highlight Children’s Palliative Care (CPC). Several speakers made presentations highlighting key areas in Paediatric Palliative Care (PPC).
Prof. Julia Downing – the International Children’s Palliative Care Network (ICPCN) Chief Executive kicked things off in the morning session with her presentation on Children’s Palliative Care. She said “Children’s Palliative Care is not an optional extra. It is an essential component of care and about living and ensuring children and families have the best quality of care.”
Every child’s need is unique and there isn’t a one-size-fits-all all to PPC. For instance, children with curative treatment may or may not recover from the illness. There are different types of models that have been developed over the years to help in coming up with the best care for children. The burden is unevenly distributed. According to the World Health Organisation (WHO) current statistics, the Afro region has the highest mortality rate for children under the age of 5 i.e. 72 per 1,000 live births. More than 50% of the global need for palliative care is in Africa. According to the Global Atlas of Palliative Care, 7% of global palliative care need is for children.
According to ICPCN statistics in 2017, at least 21 million children need palliative care annually and sadly some countries have regressed in CPC over the years due to a number of factors which means the need could be higher. In Kenya less than 1% of children who need palliative care could access it in 2017 but there have been positive changes over the years and now more children can access palliative care.
All healthcare professionals need to know something about palliative care. “One of the big barriers is culture as we relate to each other differently. Some people do not talk about death and dying because of their beliefs. We need to understand and work with our cultures and open up these discussions.” Prof. Julia Downing.
There are several myths that come up and hinder effective palliative care services such as:
- Palliative care equals giving up hope.
- Palliative care is only given at the end of life
- Children must be at the end-of-life stage to receive palliative care
- Palliative care is meant for children with cancer
We need to change the language we use in palliative care and replace it with suitable words and phrases in order to change the negative narrative in CPC. Such statements can be the use of life-threatening and not just life-limiting. It is also important to note that children range in age from prenatal to adolescence. We should avoid the withdrawal of support, care, and treatment as the children undergo palliative care and transition to focus on quality and comfort. Finally, we should always hope for the best even when preparing for the worst.