“...an active and total approach to care, from the point of diagnosis or recognition, 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/young person and support for the family. It includes the management of distressing symptoms, provision of short breaks and care through death and bereavement. (ACT 2009)
It is recognised that a number of children with exceptional healthcare needs will have shorter lives due in part to the complexity and severity of their conditions and may require to access support from general and specialist palliative care services during their lifetime. As the model below shows, the ‘better concept’ of palliative care identifies the complimentary working between active and supportive care throughout a lifespan.
It is essential to discuss and educate families about the model of paediatric palliative care and this needs to be at the right time and place with the family. It needs to be in their time and not our time. Sharing significant news with parents and children should be seen as a process, rather than a one off event. Before, during and after the session are all key times and it is important to see it as a whole process, which will continue in the minds of the parents and the child.
The Scottish Government in (2012) produced ‘A Framework for the Delivery of Palliative Care for Children and Young People in Scotland’ which provides an integrated model for palliative care for all health boards in Scotland setting out clear standards and outcomes for service development an delivery.
Advanced Care Planning:
Advanced Care Planning is a philosophy of care that promotes discussions in which children their families and often those closest to them. It supports them to identify their wishes and make decisions with respect to their future health, personal and practical aspects of care and ensures they are known and so can be acted upon. This can be captured within a personal Anticipatory Care Plan.
The Anticipatory Care Plan (ACP) provides a tool designed to promote and record your discussions with the child and family to ensure the process is dynamic and individual to each person. It is not just a single form to complete, nor a series of boxes to be ticked. The ACP is a holistic document focusing on the whole person, their life, relationships, hopes and fears and although inclusive of; it is not based on symptoms alone.
The ACP also sets out an agreed plan of care to be followed when a child’s condition deteriorates. It provides a framework for both discussing and documenting the agreed wishes of a child and their parents/carers, so ensuring these are carried out when the child develops potentially life-threatening complications of their illness or reaches the end of life. The ACP is a patient/family held document and designed for use in all environments that the child encounters: home, hospital, school, hospice, respite care, and for use by the ambulance service. The ACP compliments as a supporting document, the Child/Young Person Acute Deterioration Management form (CYPADM).
Useful web sites: