What is children’s palliative care and who provides it in South Africa?
What comes to mind when you hear the words children’s palliative care? Do you assume it must only be for children with cancer, or an incurable illness, nearing the end of their lives? Do you believe that you resort to palliative care when all hope is lost and there is nothing more that can be done to cure an illness?
In truth, although it includes good care at the end of life, children’s palliative care is concerned far more with ensuring sick children live as well as possible. By accessing palliative care for their child, parents are most definitely not giving up hope and it should never be considered a ‘last resort’.
What is it?
Palliative care for people of all ages is considered a human right and is included as an essential component of Universal Health Coverage. Children’s palliative care is the holistic and active care of a child or adolescent with a serious, life-threatening condition or an illness that will likely cause death before they reach adulthood. It is provided by a team of people working cooperatively to relieve the physical, spiritual, emotional and social problems of the child. Care and support is extended by this team to close members of the child’s family.
A children’s palliative care team will usually include doctors, paediatricians, nurses, social workers, spiritual care providers, psychologists, physiotherapists, speech and language therapists, and family counsellors. There is no finite list as to who should be on this team as it depends on available resources and the needs of the sick child and family. The child and their parents and close family members are also considered members of the team and have a say in important decisions and choices regarding how and where care is provided.
Who needs it?
Children’s palliative care is not only for children with cancer. In fact, cancer patients constitute a reasonably small number of the patients being seen by our children’s palliative care services. This is partly due to there being a number of organisations in the country that provide excellent supportive care for children with cancer and their families. Genetic conditions and conditions that affect the child’s heart, kidney and lungs are common reasons for accessing palliative care.
Research has estimated that at least 800,000 children in South Africa have an illness or condition that would be relevant for receiving palliative care with less than 5% able to access it due to lack of services.
Who provides it?
Those children and families who do access it, do so through a handful of self-funded children’s palliative care services operating within our borders. There is very limited state funding for children’s palliative care so most of these services rely entirely on the generosity and support of the public to continue their compassionate and important work.
When should a child be referred for palliative care?
Palliative care can and should start as early as at the time of diagnosis or at any point along the progression of a serious, life-threatening illness, even if the child is receiving treatments that are aimed at cure, such as a kidney transplant. This is because the overarching goal of providing palliative care is to ensure the very best possible quality of life for the child and family. Many people are surprised to learn that, depending on the illness, a child may access palliative care over a period of many years.
What does the care look like?
It begins with a thorough assessment of the needs of the child and family after which team members plan for and find ways to meet those needs. This could range from finding the correct combination of medicines to treat persistent, painful and unpleasant symptoms of the illness, helping to coordinate ongoing education for a school-going child, providing psychological and emotional support for siblings or providing food hampers and looking for outside social support for a family who are battling financially due to the additional costs of caring for a sick child. All these needs fall under the banner of ‘palliative care’. It also includes advance care planning which is helping families prepare for emergency situations as well as thinking about when and where the child will die and what interventions will be used at this time.
Where is it provided?
Children’s palliative care can be provided almost anywhere and, in South Africa, is provided mostly in hospital where the sick child is identified, and if and when the child is discharged, continues in the child’s own home by visiting team members. There are just three in-patient children’s palliative care units (children’s hospices) in the country.
Where can I learn more about children’s palliative care?
Palliative Care for Children South Africa (PatchSA) is an inclusive and compassionate network that shares specialised knowledge, tools, resources and opportunities to ensure the best possible care for children with life-threatening and life-limiting illnesses, and to provide support to healthcare professionals, families and lay caregivers. Please visit the PatchSA website at www.patchsa.org to learn more about children’s palliative care and find a map of children’s palliative care services and their contact details.
All Lenmed Private Hospitals work closely with PatchSA to bring the most holistic treatment to our patients.