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