1. Professional Development Programme for Organ Donation 1 Paul Murphy Gurch Randhawa Ella Poppitt September 2010 Identification and Referral “Improving organ donation within your hospital”

2. Professional Development Programme for Organ Donation 2 The progression of your learning journey Online Tool: Self-Assessment Tool, Document Sharing, Podcasts, Discussion Forum, PDP Atlas, Programme Progress Tracker National Kick-Off Event (inc Law & Donation after Cardiac Death Master Class) National Kick-Off Event (inc Law & Donation after Cardiac Death Master Class) Change Management & Leadership Fundamentals Master Class 1 (Diagnosis of Brain Stem Death and Regional Peer Consulting Group Launch) Master Class 2 (Donor Management & Physiology and Emergency Medicine) Making Change Happen (Development of action plan to implement changes in Trust) Master Class 3 (Referral / consent / authorisation / Media Paediatrics ( Regional Collaboratives National Review Event (Review of Programme and Ethics and Media Skills Master Class) National Kick-Off Event (inc Law & Donation after Cardiac Death Master Class) National Kick-Off Event (inc Law & Donation after Cardiac Death Master Class) Change Management & Leadership Fundamentals Regional Peer Consulting Group (Introduction and coaching in action learning sets) Regional Peer Consulting Group (Introduction and coaching in action learning sets) Making Change Happen (Development of action plan to implement changes in Trust) Regional Collaboratives National Review Event (Review of Programme and Ethics and Media Skills Master Class) Podcasts : Eye & Tissue Donation, Epidemiology of Donation & Transplantation, Audit & Statistics and PDA: interpretation & Action Online Tool Self Assessment Tool, Document Sharing, Podcasts, Discussion Forum, Programme Atlas, Programme Progress Tracker AllClinical LeadsChairs of Donation Committees

3. Professional Development Programme for Organ Donation 3 Agenda 1 Identification, referral and consent / authorisation: an overview 40mins 2Approaches to consent / authorisation40mins Break15 mins 3Cultural and religious influences45mins Break15 mins 6 Close 5mins

4. Identification, referral and consent / authorisation An overview Dr Paul Murphy 4

5. Professional Development Programme for Organ Donation Introduction Achieving the strategic big wins for Organ Donation requires breaking down the barriers to success to reveal the underlying issues and plan the most effective interventions 5 There are two important elements to referral 1.That it happens 2.That it occurs soon enough to maximise the opportunity for that person to be a donor Consent / authorisation is the biggest single obstacle to donation Considerable evidence for modifiable factors within the family approach.

6. Professional Development Programme for Organ Donation Introduction Achieving the strategic big wins for Organ Donation requires breaking down the barriers to success to reveal the underlying issues and plan the most effective interventions 6 International evidence suggests that timely identification and referral may improve all facets of the donation pathway, and thereby increases the possibility of an individual’s desire to donate being identified and fulfilled.

7. Professional Development Programme for Organ Donation 7 Pathway for a potential DBD donor Audited Patients Was patient ever ventilated? Was BSD a likely diagnosis? Were BSD tests performed? Was BSD diagnosed? Were there any absolute contraindications? Was subject of solid organ donation considered? Were Next of Kin offered donation? Was consent/authorisation obtained? Did organ donation occur? Referral to Co-ordinator staff

8. Professional Development Programme for Organ Donation Understanding the bigger picture 8 NICE short clinical guideline –Donor identification and referral –Family consent –Consultation begins in spring 2011 Never events consultation –Inadvertent ABO mismatch –Failure to refer patient on Organ Donor Register Quality Outcome Framework for Primary Care –% patients registered on ODR –www.nice.org.uk/aboutnice/gof/suggestions.jsp

9. Identification and referral of potential donors 9

10. Professional Development Programme for Organ Donation 10

11. Professional Development Programme for Organ Donation 11 Donation not considered

12. Professional Development Programme for Organ Donation 12 Donation considered, family not approached

13. Professional Development Programme for Organ Donation 13 Why do we not consider / refer everyone? delays in co-ordination and retrieval –arrival of SN-OD –very limited absolute contra-indications –protracted decision-making and offering algorithm –inconsistency between theory and practice lack of confidence with process family – cultural and language barriers – fear of violence – tragic circumstances difficulties with Coroner / Procurator Fiscal / police resources Drilling down to the root causes of failure to refer potential donors in a timely fashion

14. Professional Development Programme for Organ Donation 14 Ages of deceased donors in the UK

15. Professional Development Programme for Organ Donation 15 Contra-indications to Donation absolute – variant CJD – HIV disease (not HIV infection) near absolute –disseminated malignancy –melanoma (except local melanoma treated > 5 years before donation) –treated malignancy within 3 years (except non-melanoma skin cancer) –age > 90 years –known active tuberculosis untreated bacterial sepsis Near absolute contra-indications may be overridden when the recipient’s condition is grave (e.g. fulminant hepatic encephalopathy) Oldest deceased donors in UK (yrs) DCDDBD Kidney8085 Liver7085 Heart-62 Lung5665 Pancreas5963

16. Professional Development Programme for Organ Donation 16 Minimum Notification Criteria from Organ Donation Taskforce Donation after Brain-stem Death When no further treatment options are available or appropriate, and there is a plan to confirm death by neurological criteria, the DTC should be notified as soon as sedation/analgesia is discontinued, or immediately if the patient has never received sedation/analgesia. This notification should take place even if the attending clinical staff believe that donation (after death has been confirmed by neurological criteria) might be contra-indicated or inappropriate. All patients should be have the possibility for donation considered as part of their end of life care, and early referral promotes this possibility

17. Professional Development Programme for Organ Donation 17 Minimum Notification Criteria from Organ Donation Taskforce Donation after Cardiac Death In the context of a catastrophic neurological injury, when no further treatment options are available or appropriate and there is no intention to confirm death by neurological criteria, the DTC should be notified when a decision has been made by a consultant to withdraw active treatment and this has been recorded in a dated, timed and signed entry in the case notes. This notification should take place even if the attending clinical staff believe that death cannot be diagnosed by neurological criteria, or that donation after cardiac death might be contra-indicated or inappropriate. These proposals are an acceptable but minimum description of what is necessary. They should be implemented in all acute Trusts. ODTF Report

18. Professional Development Programme for Organ Donation 18 Expanded Notification Criteria from Organ Donation Taskforce Clinical Triggers The Taskforce considers that there is an urgent need for a pilot study looking at the impact of introducing clinical indicators as a trigger for notification. The Taskforce believes that it should assess not only the role of triggers in increasing donation, but also the impact upon staff and patients and their families of introducing what the Taskforce accepts is a radical change of practice. The Taskforce believes that having the evidence from such a study would be critical in gaining the necessary support to be able to move the agenda forward on this important issue. These clinical notification proposals should be seen not in isolation, but as part of the overall strategy ODTF Report

19. Professional Development Programme for Organ Donation 19 US Breakthrough Collaborative Clinical Triggers Likelihood of death – GCS < 5 – Absence of one of more brain stem reflexes Declared intention to perform brain death tests Declared intention to withdraw cardiorespiratory support Overarching strategies focus on change, improvement and results rapid and early referral and linkage integrated donation process ‘aggressive pursuit of every donation ‘In short, early referral leads to increased time with potential donor’s family and results in higher donation rates’ Shafer, T (2006)

20. Professional Development Programme for Organ Donation 20 US Breakthrough Collaborative Collaborative Starts Here

21. Professional Development Programme for Organ Donation 21 Collaborative Starts Here US Breakthrough Collaborative

22. Professional Development Programme for Organ Donation 22 All patients with severe brain injury requiring mechanical ventilation Call if: brain stem death testing planned GCS ≤ 4 absence of 1 or more cranial nerve reflex – pupils fixed – no corneal reflex – no cough or gag reflex – unresponsive to painful stimuli A decision to withdraw active treatment has been made in a ventilated patient of any age or Clinical triggers for referral………in Birmingham

23. Professional Development Programme for Organ Donation 23 Advantages of Clinical Triggered Referral

24. Professional Development Programme for Organ Donation 24 Advantages of Clinical Triggered Referral All patients should be have the possibility for donation considered as part of their end of life care, and early referral promotes this possibility all potential donors are referred early access to coordination and retrieval advice –advice on confirmation of brain-stem death –allows donation potential to be identified and end of life care plans to be defined –reduces likelihood of delays in arrival of SN-OD or retrieval team(s) –facilitates ‘long contact’ model of family support for consent / authorisation improves accuracy of PDA data

25. Professional Development Programme for Organ Donation 25 ‘Never Events’ ‘Never events’ are defined as serious, largely preventable patient safety incidents that should not occur if the available preventable measures have been implemented by healthcare providers. Criteria: clear potential for or has caused severe harm / death evidence of occurrence in the past (i.e. it is a known risk) existing national guidance on prevention event is largely preventable if guidance is implemented occurrence can be easily defined, identified and continuously measured The occurrence of a never event is a clear indicator of an organisation that which has not put in place the right system and processes to prevent the incidents from happening.

26. Professional Development Programme for Organ Donation 26 Current ‘Never Events’ wrong site surgery retained surgical instrumentation wrong route administration of chemotherapy failure to detect misplacement of orogastric or nasogastric tubes prior to use in-hospital maternal death from post-partum haemorrhage following elective Caesarean section iv administration of mis-selected concentrated potassium chloride In July 2010 the Government committed to proceed with work to impose fines for an extended list of never events.

27. Professional Development Programme for Organ Donation 27 Proposed ‘Never Events’ inadvertent transplant of an ABO / HLA incompatible organ A person who is on the Organ Donor Register and who does not have an absolute contra-indication for organ donation and who dies without having been referred for consideration of organ donation. consultation in October ‘..serious failure will not be tolerated, especially where there are clear guidelines and procedures in place to prevent serious incidents. Where serious failings still occur, organisations will be subject to serious sanctions…’