1. UWE Bristol ‘Child & Family Wishes’ for end of life care: a multi-service case notes review of end of life planning for children with life-limiting conditions Dr. Antonia Beringer Senior Research Fellow, University of the West of England, Bristol. Dr. Emma Heckford SpR Paediatric Palliative Medicine, University Hospital Wales, Cardiff.

2. Background Planning for end of life (EoL) is a sensitive and important part of providing comprehensive and individualised palliative care – reflected in ACT standards Least well achieved of the pathway standards Bristol based project group developed ‘Child & Family Wishes document’ guidance to support EoL planning (Fraser et al 2010)

3. Aims To review documentary evidence of planning against the ACT key standards for EoL care across hospital and community health service and voluntary sector children’s palliative care providers. To measure the impact of the ‘Child & Family Wishes’ document on EoL care planning.

4. Method a manual, retrospective, case notes review children with a diagnosed life-limiting condition died between October 2008 and March 2010 identified from Child Death Overview Panel review data defined geographical area ethical and individual service permissions

5. Sample Source: 114 sets of notes from NHS hospital, NHS community, hospice and home based voluntary services 48 children/young people: 24 girls, 24 boys ACT category n= I 19 II 0 III 18 IV 11

6. Lead specialty Lead specialty:Number of children Oncology16 Neurology11 Neonatology5 Respiratory5 Cardiology3 Intensivists3 Community paediatrics3 Endocrinology1 General paediatrics1

7. Age at death (n=48)

8. ACT standards for EoL care Standard 1Professionals should be open and honest with families when the approach to end of life is recognised 2Joint planning with families and relevant professionals should take place as soon as possible 3A written plan of care should be agreed including decisions about methods of resuscitation; emergency services should be informed 4Care plans should be reviewed and altered to take account of changes 5 There should be 24 hour access to pain and symptom control including access to medication 6Emotional and spiritual support should be available to the child and carers 7Children and families should be supported in their choices and goals for quality of life to the end

9. Standard 1: Professionals should be open and honest with families when the approach to end of life is recognised Open discussion Discussion documented in 35/48 cases In 1/48 case young person had been present Cases where siblings told but not affected child Discussion about EoL plans sometimes resisted by parents and postponed by staff.

10. Standard 2: Joint planning with families and relevant professionals should take place as soon as possible Joint planning Services involved: min 3, max 22, mean 5. Plans often made late in the child's life delays related to diagnostic/prognostic uncertainty or ongoing curative management plans triggered by an acute life threatening event timely and comprehensive planning more likely by specialist palliative care services

11. Standard 3: A written plan of care should be agreed including decisions about resuscitation; emergency services should be informed* Wishes at different stages of life * Emergency services informed in 6/48 cases. YesNo During the child's life3018 If the child becomes more unwell3414 In event of acute life-threatening event3612 After the child's death2325

12. Standard 4: Care plans should be reviewed and altered to take account of changes Care plan review 29/48 had been regularly reviewed and updated Plans often buried with narrative of the notes ‘Wishes’ document not used – services ‘own’ forms preferred

13. Standard 5: there should be 24 hour access to pain and symptom control including access to medication 24/7 access

14. Standard 6: Emotional and spiritual support should be available to the child and carers Bereavement support 8/48 cases - support not documented (all NHS services) Non-NHS services - detail of support offered and taken up. Extended periods of post-bereavement support reported by community based services. Parent-led support group established.

15. Standard 7: Children and families should be supported in their choices and goals for quality of life to the end Place of care Preferred place of care Preferred place of death Actual place of death Home14911 Hospice41216 Hospice or home66- Hospital3119 Not stated2120 - Ambulance1 College1

16. Key points Wide variation between and within services in level to which ACT End of Life care standards are being met. EoL care information buried within narrative of notes making it hard to find and act upon. Multi-service nature and uncertain trajectory of end of life care creates challenges for services and families.

17. What will help? Awareness raising Training & support Accessible documents Prompts – verbal, electronic, written Deeper cultural shift...

18. Closing thoughts What holds us back from 100% achievement of EoL care standards ? “Death denial and our own personal struggle with mortality...impacts on care delivery” (Camilla Zimmermann, 2007) “We must be aware of our own existential standpoints [to do this work]” (Paul Moon, 2008)