Together for Short Lives, the UK’s children’s palliative care charity, has launched two new essential End of Life Guides to help families get the best end of life care and support when their child dies. 

Caring for a Child at End of Life for Professionals and supplementary Caring for a Child at End of Life for Families have been developed in collaboration with palliative care experts and bereaved parents who shared their personal end of life experiences for the family-focused resource.

Caring for a Child at End of Life for Professionals is a practical toolkit for all practitioners providing end of life care to babies, children and young people. It sets out key standards and goals for good practice alongside links to useful sources of information, legislation and regulations. It is aimed at supporting all professionals working with children at end of life in hospital, hospices and in the community, providing guidance from care before death to bereavement support.

The charity’s family guide, Caring for a Child at End of Life for Families, is a supportive supplementary resource, guiding families through their child’s end of life journey, helping them to prepare themselves for what should happen. Professionals are encouraged to share and work through it with families when a child is approaching end of life.

“There is currently little guidance available for caring for children at end of life, and so we hope that practitioners will use this important resource and share it with colleagues across the sector,” said Lizzie Chambers, Director of Programmes at Together for Short Lives, and author of the two Guides.

“The accompanying family booklet contains experiences from families and we hope that care teams will share it with parents and carers and talk through the sections with them at an appropriate time and pace for them.”

Lorna, Mum to triplet daughter Essie who died in 2017 at 18 months old contributed to the family Guide and says:

“I feel passionate that we should talk more openly about baby and childhood loss, I hope that the release of this new guide will empower families to talk openly about their experiences to help other families facing the unimaginable.”

Helen Bennett, Director of Care at Alexander Devine Children’s Hospice said: “This guide will support health care professionals to improve the care and support for families across settings, wherever families choose to care for their child at the time of death and in the days after. The guide offers practical guidance and thoughtful considerations in caring for families at such a profound time in their lives. The guide will provide staff with the confidence to be alongside families and to talk openly about death and dying and to provide them with the resources to care with knowledge and compassion.”

Caring for a child at end of life 

The charity hopes that practitioners will find both resources invaluable: “These guides aim to ensure that professionals are up to date with the latest statutory guidance and best practice so that any professional caring for a dying child can provide the best care possible to families at the very worst of times,” added Lizzie Chambers Director of Programmes at Together for Short Lives.

The professional version of the guide also includes a series of practice prompts. These are easy to share, digestible information sheets that can be used in staff training.