Advance care planning
Advance care plans (sometimes known as emergency care plans) can help people with a life-limiting or life-threatening condition plan for and receive care at the end of their life that is in line with their wishes. Talking with the child or young person, and their parents or carers, at appropriate stages gives them the opportunity to influence the care that they receive and improves their experience of care. This includes involving parents and carers when a potentially life-limiting or life-threatening condition is diagnosed in a baby during pregnancy. Advance care plans should be appropriate to the circumstances and continuously updated throughout the delivery of care and support. These plans are not a legally binding documents, and decisions within them can be changed where appropriate. Alongside family wishes and preferences, the information within the plans will include individualised treatment plans for a range of medical scenarios, as well as specific information about cardiopulmonary resuscitation.
NICE Quality Standard QS160 states that services should have evidence of local arrangements to ensure that children with life limiting illnesses (where possible) and their parents are involved in developing an advance care plan, acknowledging that this may start as early as prenatally. https://www.nice.org.uk/guidance/qs160/chapter/Quality-statement-1-Advance-care-plan
The documents used to record the plans agreed between the family and those caring for them may differ from region to region. The APPM does not endorse one specific document but rather recommends that any plan used should be in line with current evidence-based clinical guidance (NICE NG61) https://www.nice.org.uk/guidance/NG61/chapter/Recommendations#advance-care-planning and quality standards (NICE QS160).
The APPM has sort to include examples of Advance care plan documents from across the United Kingdom. Revisions to the popular Children and Young Person’s Advance Care Plan (www.cypacp.com) are now complete and Version 5 is available CYPACP . The document has been fully updated and also addresses some of the persisting concerns around flexibility, length and tailoring to specific clinical scenarios. Other Advance care plan documents included reflect services addressing the needs of their local population.
Advance care plans by region
CYPACP Research with professionals and carers
Dr Karen Shaw, research psychologist at the University of Birmingham has evaluated the Child and Young Person's Advance Care Plan (CYPACP) with research funding support from Marie Curie.
They have produced:
The Full Report on our project website is at www.birmingham.ac.uk/acp-study