An introduction to the palliative care of children and young people

Working with children, young people and their families during palliation and end of life is a privilege; however, this is a specialised area of practice with complex areas for consideration from advance care planning and symptom management to bereavement and faith support. Together for Short Lives (TFSL) (2013) defines palliative care as:

‘An active and total approach to care, from the point of diagnosis or recognition throughout the child's life, death and beyond. It embraces physical, emotional, social and spiritual elements and focuses on enhancement of quality of life for the child/young person and support for the family.'

Palliative care differs from end-of-life care (EoLC) (although the terms are often used interchangeably), which is specifically the care an individual receives in the last days, weeks and months of life, mainly focused (although not exclusively) on symptom management and care before, during and after death (Royal College of Nursing (RCN), 2020). Palliative care, however, can span years (dependent on the situation) and is important as a philosophy, putting parents and families at the heart of decision-making, ensuring care plans are made together (TFSL, 2013). Care plans need to be adaptable and flexible as they are likely to require adjusting to the needs of the child, young person or family (Pearce, 2017; TFSL, 2018). This holistic, all-encompassing definition is also used by the RCN (2018) in its competence guidance for the palliative care of children and young people.