Children's palliative care
Palliative care for children and young people is an active and total approach to care, from the point of diagnosis, throughout the child’s life, 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 whole family. It includes the management of distressing symptoms, provision of short breaks, end of life care and bereavement support.[1]
Palliative care can be introduced at any point throughout a child’s life; it is completely individual. Some children may require palliative care from birth, others only as their condition deteriorates. Families may also vary as to whether they wish to pursue treatments aimed to cure or significantly prolong life. In practice, palliative care should be offered from diagnosis of a life-limiting condition or recognition that curative treatment for a life-threatening condition is not an option; however, each situation is different and care should be tailored to the child.
Terminology
- Life-limiting /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 child increasingly dependent on parents and carers.[2]
- Life-threatening conditions are those for which curative treatment may be feasible but can fail, such as cancer. Children in long-term remission or following successful curative treatment are not included.
Children's Palliative Care (by country)
UK
There are an estimated 49,000 children and young people in the UK living with a life-threatening or life-limiting condition that may require palliative care services.[3] A 2015 survey from the Royal College of Nursing (RCN) found that nearly a third of children's nurses said they don't have the resources to deliver adequate care in the home setting[4]
Together for Short Lives[5] and Rainbow Trust Children's Charity[6] are two UK registered charities that deal with children’s palliative care.
References
- ↑ ACT, 2009. A Guide to the Development of Children’s Palliative Care Services, 3rd Edition. Bristol: ACT.
- ↑ Together for Short Lives, 2013. A Core Care Pathway for Children with Life-limiting and Life-threatening Conditions, 3rd Edition. Bristol: Together for Short Lives
- ↑ Fraser L K, Parslow R C, McKinney P A, Miller M, Aldridge J M, Hain R, Norman P, (2012), Life Limiting and Life-threatening conditions in children and young people in the United Kingdom; Final Report for Together for Short Lives (Leeds). Paediatrics, Volume 129, Number 4, April 2012. http://pediatrics.aappublications.org/content/129/4/e923
- ↑ "Children's Nurses Needed To Bridge Care Gap | Huffington Post". The Huffington Post. Retrieved 2016-11-01.
- ↑ "About us". www.togetherforshortlives.org.uk. Retrieved 2016-11-01.
- ↑ "About Our Charity| Rainbow Trust Children's Charity | Rainbow Trust Children's Charity". Rainbow Trust Children's Charity. Retrieved 2016-11-01.