Palliative care for young lives

There are a number of similarities in the principles of palliative care for children and adults, but also a number of differences. Both adult and children’s palliative care are concerned with improving the quality of life for both the ‘patient’ and the family. Both services provide a total approach to care.

‘Palliative care for children and young people with life-limiting conditions is an active and total approach to care, from the point of diagnosis or recognition, embracing physical, emotional, social and spiritual elements through to death and beyond. It focuses on enhancement of quality of life for the child/young person and support for the family and includes the management of distressing symptoms, provision of short breaks and care through death and bereavement.’
Association for Children’s Palliative Care (ACT) 2008

Palliative care for children is not synonymous with end of life care. By applying the principles set out in the definition, palliative care can be provided from time of diagnosis, even if the child is well. It is a positive choice, not a last resort. Palliative care should always be part of the care of a child with a life-limiting condition.

There are many life-limiting conditions which affect children and young people. Many of these conditions are rare, and children and young people may survive for a few days or for many years.

Palliative care can be delivered at home, in hospital or at a hospice and there are differences in the services provided by an adult hospice and a children’s hospice. Confusingly a hospice can mean a philosophy, a programme of care or a site of care.

Hospice care for children is provided over a long period of time, often for years. Short break care is often a crucial part of the support provided. Adult hospices in contrast provide less short break care, focusing on symptom management and end of life care. The average length of stay in an adult hospice is 13 days whereas a child with a life-limiting condition may receive short break care for many years.

Tŷ Hafan is a philosophy of care and not just a site of care. We are able to provide a number of services to meet the physical, emotional, social and spiritual needs of the child or young person and family at the hospice, hospital, home or school.

We have considerable expertise in the total care of children and young people with many life-limiting conditions. This includes expertise in end of life issues, listening and talking with children and young people and in bereavement support for siblings and parents. We are able to use this expertise to give support, information or training to all professionals working with children, young people and families.