2011 - ISBTS 2011 Symposium


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Oral Communications 9: Psychosocial Outcomes & Quality of Life

12.216 - Towards establishing a treatment and palliative care approach in order to provide holistic individualised advance management plans for children with intestinal failure

Presenter: Girish, Gupte, Birmingham, United Kingdom
Authors: Samantha Sanghera1, Velma Wright1, Girish Gupte1

216
Towards establishing a treatment and palliative care approach in order to provide holistic individualised advance management plans for children with intestinal failure

Samantha Sanghera, Velma Wright, Girish Gupte

Liver Unit (including small bowel transplantation), Birmingham Children's Hospitals Hospital, Birmingham, United Kingdom

Background: Children assessed for intestinal transplantation have life limiting illness, face mortality and receive treatment towards transplantation.  Any deterioration might result in end of life care.

Aim: To report on our experience with a view to introducing active palliative care as well as planning end of life (e.o.l) needs in advance.

Method: A retrospective review identified 52 (100%) children assessed for Intestinal Transplant between January 2008 and December 2010. Care packages were analysed including the involvement of palliative care teams and existence of  e.o.l care plans.

A staff survey established whether there was an understanding of the terms “e.o.l  care” and “palliative care” as well as staff confidence and responsibility regarding discussing e.o.l.

Results: 52 (100%) children had life limiting illness. There was no reliable data for 18 (35 %) patients. Of the remaining 32 (65%) children, 23 (71 %) patients had been referred for hospice support however only 2 (6%) had shared advance e.o.l care plans and a further 2 (6%) had private plans made with the hospice. 20 (100%) staff defined end of life care. 8 (40 %) defined palliative care with 2(10%) recognising it should begin at diagnosis. 9 (45%) felt able to discuss end of life issues, 4 (20 %) with support. A variety of professionals were presented as the discussion lead; a common theme being a familiar professional supported by a consultant.

Conclusions: Accurate detailed documentation and communication needs to occur at referral.  Active palliative care should be established in 100% of children at assessment embracing physical, emotional, social and spiritual care and planning e.o.l care in advance. Plans should be shared between teams. 

Team training is needed to re-define palliative care and promote confidence in discussing e.o.l needs and planning e.o.l care formally and in advance. This should be consultant led with multi-disciplinary support.


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