End of life care should be for the whole family

New guidance from the National Institute for Health and Care Excellence (NICE) has argued that end of life care should be available for the whole family, and not just the dying child.

It is reported that approximately 40,000 children and young people are estimated to be terminally ill in England, meaning that parents and sibling often become carers, carrying monumental pressures in the process.

The new guideline looks at a wide range of issues including where the best place to die might be, and how to manage a child’s pain and symptoms.

NICE, who developed the guidance alongside children at the end of their lives in order to reflect what they felt was important from their care, believe that the medical and social care team responsible for a child’s care at the end of life should be aware the needs of the family may change as the child’s illness progresses, adapting to the family’s requirements where possible.

Anne Harris, director of care at the Rainbow Trust, an organisation providing emotional and practical support to families who have a child with a life threatening or terminal illness, said: “This guideline sets a high standard for what care and support should be provided to children and their families, and how that care is delivered, wherever they live across England. It recognises both the need for compassionate care for the whole family, and that children have different needs to those of adults at the end of life.

“The next step will be ensuring that the guideline is well understood by all those involved in child palliative care, and that sufficient resources and skilled staff are put in place by local decision-makers to make sure these ambitions are realised for all terminally ill babies, children and young people.”