Issue date: 30 April 2010
A researcher from the University of the West of England is working on an evaluation of end of life advance care planning guidelines for health practitioners working with children.
Dr Antonia Beringer has received funding from the UWE Early Career Research Grant scheme to evaluate end of life planning, including the 'Child & Family Wishes' document, designed to improve end of life planning for children with life- limiting conditions developed by a team involved in children's palliative care in the Bristol area which included medical, nursing, management, academic, psychology and chaplaincy staff. .
Antonia explains, “The 'Child & Family Wishes' document' offers support and guidance during discussions about end of life care with families, by providing a practical and flexible document on which to record the wishes of the child and family.
It has now been available for one year locally through UH Bristol and Bristol Primary Care Trusts and nationally through The Association for Children's Palliative Care where it can be downloaded from their website www.act.org.uk
“The plan is now to measure the impact the 'Wishes' document has had. We will set out to map current end of life planning practice, present a set of case studies based on peoples' experience and tease the factors that impede or support the planning process. The evaluation will also consider the training implications for those involved in end of life planning.
“One of the main motivations for developing the document was to promote early planning which would enable children to be cared for in a place chosen by their family, recognising that this may promote a shift in location of end of life care from hospital to home or hospice, when this is appropriate and wished for by families. We are also aiming to demonstrate that end of life plans can have tangible benefits for families and health practitioners at a time of tremendous emotional strain on all involved. The evaluation will also provide evidence for children's services commissioners on which to base decisions about development and training for professionals in planning for end of life care."
Dr Beringer will work in partnership with Dr James Fraser, Paediatric Intensive Care Consultant, University Hospitals Bristol NHS, Dr Nicky Harris (Medical Director, Children's Hospice South West)' Chris Roys (Chief Executive, Jessie May Trust), and Dr Emma Heckford, Paediatric Registrar, North Bristol Trust.