Key definitions

Children’s palliative care

Children’s palliative care is an active and total approach to care, from the point of diagnosis or recognition, throughout the child’s like, death and beyond. It embraces physical, emotional, social and spiritual elements and focuses on the enhancement of quality of life for the child or young person and support for the family.

It includes the management of symptoms, provision of short breaks and care through death and bereavement.

Children’s hospices

Children’s hospices provide palliative care for children and young people with life shortening conditions and their families. They are delivered by a multi-disciplinary team and in partnership with other agencies and take a holistic approach to care, aiming to meet the needs of both child and family – physical, emotional, social and spiritual – through a range of services.

Life shortening and life threatening conditions

Life shortening conditions are those for which there is no reasonable hope of cure and from which children or young people will die. Some of these conditions cause progressive deterioration rendering the children increasingly dependent on parents and carers.

Life threatening conditions are those for which curative treatment may be possible but can fail, such as children with cancer. Children in long-term remission or following successful curative treatment are not included.

Hospice at home

Hospice at home is a term commonly used to describe a service that brings children’s palliative care into the home environment. Hospice at home works in partnership with parents, families and other carers.

End of life

The end of life phase begins when a judgement is made that death is imminent. It may be the judgement of the health or social care team responsible for the care of the patient, but it is often the child, young person or their family who first recognise it’s beginning.

End of life care

End of life care helps all those with an advanced progressive, incurable illness to live as well as possible until they die. It focuses on preparing for an anticipated death and managing the end stage of a terminal medical condition – this includes care during and around the time of death and immediately afterwards.

It enables the supportive and palliative care needs of both the child, young person and their family to be identified and met throughout the last phase of life and into bereavement. It includes management of pain and other symptoms and provision of psychological, social, spiritual and practical support and support for the family into bereavement.