C&V UHB Child Health Advance and Emergency Care Pathway Focus Group

1. The Advance and Emergency Care Pathway for Children and Young People with Life-limiting or Life-threatening illness C&V UHB Child Health Advance and Emergency Care Pathway Focus Group

2. Overview • What is an AECP? • When to introduce an AECP • Ethical & legal frameworks for practice • The AECP process • The AECP form

3. The AECP • Is an expression of wishes • Is not the same as a DNAR directive • Aims to facilitate open and effective communication within the multiagency team and between the team and the patient/family

4. AECP- A framework of care • Multi Agency • Travels with the child • Seamless communication • Decisions should be made within a trusting relationship and an ethos of shared decision-making* • Professionals should be led by the needs of the patient/family • takes place over a number of weeks, months or years • Advance care planning may evolve over time* *Brook et al. A Plan for Living and a Plan for Dying: Advance Care Planning for Children. Arch Dis Child 2008; 93(suppl): A61-66

5. AECP- transparent procedure • For children/young people who die at home the AECP aims to: • Ensure that families understand the multiagency response to death • Ensure that agencies are appropriately informed to prevent additional distress to families

6. Advance Decisions in Adults - • Advance decisions concern the refusal of treatment • Can be made only by mentally capable people aged 18 and over • Can be oral or written (unless relating to life-saving treatment, in which case they must be in writing and meet further criteria) • Must specify the treatment being refused • Healthcare professionals are bound by advance decisions to refuse treatment • So an AECP cannot be an advance decision, unless it meets these basic criteria.

7. When to create an AECP? Would you be surprised if this child died prematurely due to a life-limiting illness? Would you be surprised if this child died within a year? Would you be surprised if this child died during this episode of care? Do you know what the patient’s and family’s wishes are for end of life care? • Predicting end of life is challenging* • Families benefit from the opportunity to make informed decisions about the care of their child* If the answer to any of these questions is ‘NO’ it may be worth considering the value of an AECP **Vickers JL, Carlisle C. Choices and control: parental experiences in pediatric terminal home care. J Pediatr Oncol Nurs 2000; 17: 12-21 *Brook L, Hain R. Predicting death in children. Arch Dis Child 2008; 93: 1067-70

8. When to create an AECP? • Child/YP receiving end of life care • Child/YP’s condition is such that death may occur at any point (reasonable risk of life threatening event) • ‘PICU/HDU route into AECP’ triggered during a recent PICU/HDU admission • Professionals, child/YP or family identifying a deterioration in the patient • Knowledge of the natural history of the child/YP’s condition suggests that he/she may be approaching the terminal phase

9. Benefits and Challenges

10. Benefits andChallenges

11. Benefits and challenges

12. Benefits and challenges

13. Ethical & legal frameworks • - Data Protection Act 1998 • Mental Capacity Act 2005, • Equalities Act 2010 • -Good practice in consent implementation guide WAG 2008

14. Who do you need to discuss and agree the AECP with? • AECP is not a consent form, but you need to be clear who is the client! • For example, no point agreeing an AECP with parents, if it’s the child/young person’s consent you need when implementing the AECP, by providing treatment, etc

15. from whom must consent be obtained? Capacity to consent • Understand, • retain, • weigh & use information

16. is it…? • At 16-17years a young person ispresumed to have the capacity to consent( MCA 2005) • for a 16/17 year old with impaired capacity?A best interests decision (MCA 2005) must be followed • Under 16yrs a young person may have the capacity to consent if they are Gillick/ Frazer Competent • A person with parental responsibility , if <16 and not Gillick competent • Or is there a court decision or is one needed?

17. Sharing the AECP • It is essential that you obtain and record consent from the appropriate person, before you share the AECP with other people, agencies! • Do not rely on parental consent for this if the child is competent • If a 16/17 year old lacks capacity to consent to this, sharing AECP must be a best interests decision (MCA 2005)

18. The AECP Process Family School Ty Hafan Police Coroner Ambulance service GP Community nurses Local paediatrician Social services Respite care Specialist paediatrician(s) Specialist nurses PICU

19. Need for AECP identified Discuss with Paediatric Palliative Care team for support/advice if necessary Identify lead consultant Identify key worker for AECP Arrange meeting with child/ young person/family Discuss wishes and complete form Identify firstcontact for family Handwritten form signed by lead consultant & family Give copy of form to family MDT meeting Key worker distributes copy of plan to all on agreed distribution list AECP should be reviewed/revised as necessary – at least every 12 months Key worker should co-ordinate this process

20. Child dies at home Parents call agreed 1st contact Worker will offer telephone support or go to home depending on family’s preferences IF AT ANY STAGE ANY PROFESSIONAL HAS CONCERNS THAT THE CHILD’S DEATH MAY NOT HAVE OCCURRED NATURALLY OR AS EXPECTED THE POLICE MUST BE INFORMED IMMEDIATELY Worker phones GP, if available, to certify death If GP unavailable OOH doctor contacted to verify death and GP requested to complete death certificate ASAP Next working day: 1st contact to inform Detective Inspector in local Public Protection Unit of child’s death then hands over if appropriate to key worker. Team to assist family with their wishes for saying goodbye to the child and funeral arrangements. Key worker to inform all agencies and holders of the plan.

21. The AECP form • 12 pages long • Contact details • Family • Professionals • Treatment plans • Acute deterioration • Slow deterioration • Symptom care • Clarity of documented wishes • Consent to information sharing

22. Completing the form • Ensure form is dated (first completion, amendment & planned review) • Current form should be filed at the front of the child’s medical case-notes • Non-current forms should not be destroyed • Send completed audit form to Dr Sian Moynihan, St David’s Children’s Centre

23. Supporting documentation • To be found on the clinical portal: • Background information • Guidance on the process and form-completion • Information sheet for families and for patient • Example covering letter to professionals • Additional guidance: • Actions to take when a child dies • Involving the Coroner, Police & Ambulance • Audit form

24. Conclusions • AECPs should replace DNAR orders • AECPs support and evidence discussions taking place in different settings • AECPs are transportable, visible and consistent • AECPs facilitate multiagency support from point of diagnosis through to death and into bereavement

25. One last thing • The document cannot predict all eventualities • A valid document will contribute information to decision making • The responsibility of interpreting a AECP lies with most senior available professional at time of treatment • Professional judgement must be used when interpreting the document • If under the AECP, the child/young person needs treatment, ENSURE you obtain consent from the right person!

26. For support/advice please contact: • Dr Richard Hain, Consultant in Paediatric Palliative Medicine, UHW • Dr Sian Moynihan, Consultant Community Paediatrician, • Dr Michelle Jardine PICU Consultant • Dr Jennifer Evans Consultant Paediatrician • Dr Joan Bongili Associate Specialist/ Dr Cath Norton Consultant, CD • Dr Victoria Lidstone Consultant Adult and transition Palliative Care • Julia Barrell Mental Capacity Act Manager • SNHV, Special School nurse leads • Ty Hafan Cath Thompson Assistant Director of Care • Police DCI Richard Jones • Ambulance Andrew Jenkins Consultant Paramedic

27. Acknowledgements • Dr Charlotte Mellor, SpR Palliative Care , Bristol • Dr Sian Moynihan, Lead Consultant Community Paediatrician • Dr Michelle Jardine, Consultant Paediatric Intensive Care • Dr Cath Norton, Consultant Community Paedaitrician • Dr Helen Fardy, Consultant Paediatric Intensive Care • Dr Louise Hartley, Consultant Paediatric Neurologist • Dr Richard Hain, Consultant Paediatric Palliative Medicine • Dr Graham Shortland, Consultant Paediatrician • Cath Thompson, Assistant Director of Care, Ty Hafan Children’s Hospice • Mrs Hilary Valle, Parent representative • Liz Pendleton, Lead Nurse, Children’s Community Nursing, Cardiff • Carys Davies, Special Needs Health Visitor • Wendy Herbert, Lead Health Visitor • Dr Rhodri Lewis, General Practitioner • Chris Horrocks, Team Manager, Child Health and Disability Team, Cardiff • Janet Stroud, Assistant Team Manager, Child Health and Disability Team, The Vale of Glamorgan • Ms ME Hassell, HM Coroner for Cardiff and The Vale of Glamorgan • Rhiannon Beaumont-Wood, Welsh Ambulance Services NHS Trust • Diane Rogers, Lead for Paediatric Physiotherapy, UHW • Sue King, Parent Counseling Service, UHW • Nuala Mahon, Lead Nurse for School Health • DCI Richard Jones, Major Crime Investigation Unit • Dr Jo Griffiths, Consultant Community Child Health, ABMU • Neath/Port Talbot Children’s Safeguarding Management Board