Practicalities and sensitivities around discussing

1. Paediatric Acute Resuscitation Plan Form Practicalities and sensitivities around discussing resuscitation at the end of life: a clinical tool Dr Anthony Herbert Staff Specialist Paediatric Palliative Care Service Royal Children’s Hospital

2. PARP Implementation Overview • Case Study • Background • Components of the tool • Summary

3. Case Study • 7 year old boy • Lives in inner suburbs of Brisbane • Undiagnosed neurodegenerative condition – associated central hypotonia, macrocephaly and mild hydrocephalus • Long term prognosis felt to be guarded

4. Case Study • PEG fed – no oral intake due to poor swallow • Not mobile – uses specialised wheelchair • Seizure disorder • Recurrent severe lower respiratory tract infection related to aspiration and viral infections • Secretions problematic – suction machine at home

5. Case Study • Both parents are professionals • Younger brother aged 2 ½ years • Ongoing allied health input from a non government organisation at home (Physiotherapy and Speech Pathology)

6. Case Study • Severe LRTI in July 2010 • Family elected to continue standard paediatric cares after admission to hospital (e.g. Intravenous fluids and antibiotics, oxygen) • Parents open to limitations of invasive interventions such as intubation, ventilation or chest compressions; assumed also not for PICU • Parents were receptive to this discussion and were keen to be guided by health professionals, particularly their paediatrician • Discussion typed up by resident and filed in notes

7. Case Study • Further severe chest infection June 2011 • Difficulty locating typed summary of previous discussion in notes in the emergency department • Standard cares on ward but approximately 10 Litres / min oxygen required to maintain saturations and there was presence of increased work of breathing with associated fatigue

8. Case Study • Role of high flow oxygen discussed with family: non-invasive, could provide sufficient support to allow her to get through this inter-current illness, and may provide comfort • Patient still able to go to PICU even though not for CPR; went to PICU for 48 hours of high flow oxygen and returned to ward • Ultimately discharged home again

9. In acute clinical deterioration, it is clinically indicated to ... Provide • Oxygen (including High flow oxygen) • Airway suctioning • Pain Management • Seizure Management • Antibiotics • PEG feeds • IV fluids • Physiotherapy • Non-invasive ventilation (e.g. CPAP and BIPAP)

10. In acute clinical deterioration, it is clinically indicated to ... Not Provide • Intubation • Bag and mask ventilation • Mechanical ventilation • Cardiac drugs • Chest compressions • Cardio-pulmonary resuscitation

11. Case Study • Resuscitation Plan typed up as word document / letter • Letter / document filed in complex care section of chart, family have copy and letter also provided to QAS • Due for review in 12 months

12. PARP Implementation Background • Need to develop a form which can be filed in the front of the chart (“Complex Care” section of chart at RCH Brisbane) • Easily found at next admission • Not lost in prolonged admission • Note of where in chart discussions occurred • Consenting details and clinical authorisation

13. PARP Implementation Background • Development of an adult “Acute Resuscitation Plan form” • Coronial inquests • End-of-Life Decision-Making Project • Need for state-wide consistency • Development of similar forms in other children’s hospitals around Australia • Need to demonstrate adolescent involvement in discussion

14. PARP Implementation Quote • “agreement on uniform standards of practice and documentation across public and private hospitals can only improve the quality of care for patients facing their likely demise. This would also help families understand treatment decisions.” - Christine Clements, Deputy State Coroner

15. Background PARP Implementation Background • Importance of language e.g. use of the term “Acute Resuscitation Plan” rather than “DNR” • Process to be followed if parents are to agree to a resuscitation plan for their child is complex and often requires time • Needs trust and acceptance in the clinicians by the parents / young person

16. PARP Version 1 Adults (34 versions)

17. It was decided to have a free text box indicating the provision and non-provision of treatment because tick boxes do not provide an exhaustive list of treatment options

18. PARP Welcome to version 14! Adults (34 versions)

19. PARP

20. PARP Implementation What is the PARP? • a new form to document decisions to limit life-sustaining measures in children and young people. • filed at the front of the chart • replaces NFR or DNR orders • completed by a medical officer

21. ? When should the PARP be completed? PARP Implementation • when a senior clinician considers there’s a risk of a cardiac or respiratory arrest where resuscitation may not be appropriate • a decision not to perform CPR does not limit the patient’s other treatment

22. Why have we developed the form? PARP Implementation Ensure that: • documentation is readily available if patient arrests • dying children and young people receive appropriate care and treatment for comfort and dignity • resuscitation is not commenced or continued when clinically inappropriate

23. ARP Implementation Quote If I am suffering from a treatable condition in which it is likely that a relatively short period of medical treatment will restore me to my present health and mental functioning, then I would like to receive such treatment. However, I would not wish my life to be artificially prolonged if thereby I am left in a terminal or vegetative state ... Rev John Stott

24. Why do we need a separate paediatric document? PARP Implementation • Legal • Guardianship law does not apply to children and young people aged less than 18 years • Role of the adolescent and young person in making decisions • Role of the Department of Child Safety in making decisions in some cases • Unique ethical aspects associated with decision making in children

25. Who’s been involved Who has been involved in developing the form? PARP Implementation • Clinical Policy Unit • Palliative Care Working group (under auspices of the Child and Youth Network) • Presented at 2 Child and Youth Network Forums in 2010 and 2011 • Parents • Legal advice • Queensland Ambulance Service

26. National and International Legislation (eg. UN’s Declaration of Rights of the Child) State Legislation (Guardianship and Administration Act 2000, Powers of Attorney Act 1998) National Guidelines (including NHMRC guidelines for post-coma unresponsiveness, Australian Medical Council codes of practice in end of life care, RACP Policy: Decision Making at the End of Life in Infants, Children and Adolescents) QH authoritative documents (eg. Strategic Plan, Action Plan, People Plan, Mission, Values and StrategicDirections) Clinical Services Capability Framework etc) Queensland Health – End of Life Care Project Withholding and Withdrawing Life-Sustaining Measures Policy Withholding and Withdrawing Life-Sustaining Measures Implementation Standards Withholding and Withdrawing Life-Sustaining Measures Implementation Guideline Patient brochures Clinical Guidelines Training and Education Forms PARP Implementation Legal and Policy Framework Life-Sustaining Measures documentation Support tools Legislation Guidelines QH Project (incorporating End of Life Care Strategy - under development)

27. Policy, Standard and Guideline PARP Implementation Paediatric Implementation Guideline Part 1 and 2 Implementation Standards The Policy

28. PARP Implementation Legal and Policy Framework 6 Principles Principle 1: Principle 2: Principle 3: Principle 4: Principle 5: Principle 6: There must be respect for life, and acknowledgement that death is an inescapable part of life All decision-making must meet the standards of good medical practice For adult patients, all decision –making must respect the right to know and choose. For patients under the age of 18 years, all decision-making must be in their best interests. All efforts must be made to obtain the appropriate consent through a collaborative approach. There must be transparency in and accountability for all decision-making.

29. PARP Implementation Components of the Form 1. Clinical Assessment

30. ARP Implementation Quote “Using the Paediatric Acute Resuscitation Plan form does not change good paediatric practice, it simply changes where a clinical plan is documented.”

31. Background 2. Resuscitation Plan

32. Background 2. Resuscitation Plan - role of palliative care - documentation in chart - CPR as the key decision

33. Having the provide/ do not provide CPR box at the bottom: • follows human factors concepts • shows the decision-making pathway An earlier version of the form with tick boxes and the CPR box at the top of the page.

34. PARP Implementation Quote “In the event of acute deterioration, supportive care should be provided with priority given to comfort and relief of distressing symptoms. This should include pain relief, seizure management and sedation as is clinically appropriate. This also includes the provision of privacy with emotional, spiritual and cultural support as required”.

35. PARP Implementation Components of the Form 3. Consenting Details

36. PARP Implementation Components of the Form 3. Consenting details - Discussions with the Child or Young Person

37. PARP Implementation Components of the Form 3. Consenting details – Details of decision makers

38. PARP Implementation Components of the Form 4. Clinician authorisation

39. PARP Implementation Legal and Policy Framework • Why isn’t the PARP a “legally binding” form? • the parent / decision maker isn’t required to sign it • there are no witnessing provisions (as there are in an AHD or EPOA) • The PARP form is a clinical tool, a hospital form that provides evidence of the decision-making pathway (and discussions thereof) • The PARP does not replace, nor is it the same as, an Advance Health Directive!

40. PARP Implementation Flowchart

41. ARP Implementation Quote “In the best interests of the child, clinical decision is made in collaboration with the health care team, to withold and/or withdraw life-sustaining measures”.

42. ARP Implementation Quote “Where appropriate, take the child’s views and wishes into account when obtaining consent”

43. ARP Implementation Quote “Although the interests of the patient are always primary, at the end of life there are times when the interests of the patient begin to wane, while those of the family intensify.” Robert Truog

44. PARP Implementation Flowchart Yes

45. PARP Implementation Flowchart Consent not obtained

46. PARP Implementation Flowchart Yes

47. PARP Implementation Flowchart Withhold or withdraw life sustaining treatments In accordance with Court Order Provide medical treatment in accordance With Court Order

48. ARP Implementation Voiding a PARP How to void an ARP: • Write ‘void’ diagonally across the form, between two lines • Sign and date the annotation • Retain on the file! void

49. P ARP Implementation The Toolkit - completed Stickers “Quick Guide”

50. P ARP Implementation The Toolkit – to be completed • Coversheet • Implementation Guide