1. Organ Donation Past, Present and Future Donor Family Experience Pauline Holmes & Trish Collins SOUTH CENTRAL

2. Organ Donation Past, Present and Future Can insert pictures or name of donor family being interviewed here – or delete slide

3. Another family’s story… 3 Organ Donation Past, Present and Future “In 2011, my 16 year-old son Aaron was involved in a road crash, where he sustained fatal head injuries. He was hit at just after 5 pm and his life support machine was turned off at just after midnight. Aaron was a kind and loving child, who had often spoken about organ donation. Obviously we never expected in a million years to be faced with the situation that occurred on that night, but one thing that sticks out in my mind is that we were never asked about donation.”

4. Another family’s story… 4 Organ Donation Past, Present and Future “I raise this issue as a pointer to the service for the future. I utterly regret that I was not given the chance to “share” Aaron with someone else, to give life from his death. At the time, I needed someone to raise the issue. I simply didn’t have the fortitude to do so and in the context of difficult decisions that night, the decision to donate organs would have been the easiest of all.”

5. Organ Donation Past, Present and Future Family Approach and Consent Dr Mark Haslam Dr Angus Vincent 11 th June 2013 5 SOUTH CENTRAL

6. Session Objectives Understanding the importance of consent in overall supply of organs for transplantation. Understanding why families say no. Why using a 1 st person consent model is often unhelpful. A 3 stage approach – how best to inform and support families through their decision. Understanding the role of the SNOD in the family approach. 6 Organ Donation Past, Present and Future SOUTH CENTRAL

7. Organ Donation Past, Present and Future Regional Data 7 Dr Mark Haslam Deputy Clinical Lead Organ Donation Cheltenham Hospital SOUTH CENTRAL

8. Where are potential donors in the South Central team lost? 8 Organ Donation Past, Present and Future SOUTH CENTRAL Conclusion: Can we equal our DBD results in DCD? 1st 5 th 9 th 7 th

9. 33% 60% = Consent 82% 61%21% (58) (68)(89)(78)(56) ScotlandSouth WestEasternLondonUK SOUTH CENTRAL + + DBDDCD Doctor SNOD

10. -------- National rate 83 92 58 91 75 88 75 92 85 62 52 75 % approaches where SN-OD involved 0 20 40 60 80 100 Team Eastern London Midlands North West Northern Ireland Scotland South Central South East South Wales South West Yorkshire 1 April 2012 to 31 March 2013, data as at 4 April 2013 10 Organ Donation Past, Present and Future SOUTH CENTRAL Tied 1st + Doctor SNOD DBD

11. -------- National rate 76 85 53 80 58 80 53 74 83 69 37 65 % approaches where SN-OD involved 0 20 40 60 80 100 Team Eastern London Midlands North West Northern Ireland Scotland South Central South East South Wales South West Yorkshire 1 April 2012 to 31 March 2013, data as at 4 April 2013 11 Organ Donation Past, Present and Future SOUTH CENTRAL 6 th + Doctor SNOD DCD

12. Organ Donation Past, Present and Future Best Practice in Family Approach and Consent 12 Dr Angus Vincent Northern Regional CLOD SOUTH CENTRAL

13. Where donation potential is lost. We’ve known for years that low consent rates easily accounts for the biggest loss of potentially transplantable organs in the UK. No other intervention could increase the availability of organs for transplantation to the extent that an increase in consent to 80% would. 13 Organ Donation Past, Present and Future

14. PDA 2011/12 14 Organ Donation Past, Present and Future

15. 2011/12 data DBDDCD Approached10901592 Consent given694793 %64%50% DBDDCD Consent if on ODR93%79% Consent if not on ODR48%37% DBDDCD Consent - SNOD involved68%64% Consent - SNOD not involved 53%30% Combined 55% consent 45% family refusal 15 Organ Donation Past, Present and Future

16. Poor DCD consent rates………… 16 Organ Donation Past, Present and Future

17. Bottom line – UK Family Refusal Rate is 45% One of the highest family refusal rates in the world 17 Organ Donation Past, Present and Future

18. Family refusal rates, 2010 Note – limited international data available on family refusal rates 18 Organ Donation Past, Present and Future

19. BBC DoNation Survey August, 2005 19 Organ Donation Past, Present and Future

20. Why do families say no? Common themes are found Some amenable to intervention at time of request – so called ‘modifiable factors’ Less well understood grief reactions are important Sacrifice Guardianship of the body Relationship between body and identity 20 Organ Donation Past, Present and Future

21. PDA 11/12 – Top 3 Refusal Reasons 21 Organ Donation Past, Present and Future

22. Consent and the Law Deceased Donors  Human Tissue Act (2004) – ODR or other applicable advanced directive – Nominated representative – Prior witnessed statement – Consent (or refusal) from an individual in a qualifying relationship Living Donors (potential DCD)  Mental Capacity Act (2005) 22 Organ Donation Past, Present and Future

23. First Person Consent Essentially – ODR – Family discussion All of our national campaigns etc are aimed at this intervention Not unanimous that this is the right approach  23 Organ Donation Past, Present and Future

24. Problems with first person consent “He said he didn’t want to be a donor” “No we can’t be sure what he would have wanted” – Possibly up to 40% of refusals The ODR is not informed consent The process of being pressured to choose in life may lead to uniformed negative decisions too. Registrants on the ODR are not representative of the donor pool ( 3 - 4 x more likely to not be on ODR). 24 Organ Donation Past, Present and Future

25. Alternative to first person emphasis? Focus instead on supporting the family and their needs. Compassion and care. Understanding and acceptance. The right information to make the right decision for them. 25 Organ Donation Past, Present and Future

26. A synthesis of the available evidence surrounding the family approach and consent practice into a clinical guideline. Clear guidance on the conduct and content of the consent process Represents principles of good family care in any setting Sensitive to family needs Time and privacy Information in an understandable format Care and empathy 26 Organ Donation Past, Present and Future

27. Evidence Very large body Qualitative, observational Audit Service Development 27 Organ Donation Past, Present and Future

28. What does the evidence/guideline say about consent? Emphasises – Prior planning – A team approach – involvement of the SNOD and the importance of the presence of a trained individual – Ensuring understanding of death or its inevitability prior to discussion surrounding donation – Provision of the right information in the right way 28 Organ Donation Past, Present and Future

29. Best Practice Guidance on the Family Approach Dr Angus Vincent 29

30. Short(ish), summary guidance. Endorsed by the professional bodies. ICS – (Kevin Gunning) FICM – (Julian Bion) Copy to every UK consultant (…….but we’re good at difficult conversations aren’t we?) 30 Organ Donation Past, Present and Future

31. Approaching the families of potential organ donors The premise of this guideline is simple….. By looking after and supporting our families and providing them with the information they need to make the right decision for them, more of them will say “Yes” to organ donation. 31 Organ Donation Past, Present and Future

32. Involving the specialist nurse-organ donation Training and core day to day business Timing and transition Information Language Modifiable factors Exploring ‘no’ Family Support Reluctance amongst some consultants Professional autonomy How to do introduce How to run the conversation 32 Organ Donation Past, Present and Future

33. Introducing the SN-OD How best to do this? 33 Organ Donation Past, Present and Future

34. Planning Introducing the specialist nurse Clip1 introducing SNOD.mp4 Embed Clip 1 Or play from Video: Title 2, Ch 1 – 11:40 – 12:00

35. Three discrete stages Family care and support The right information at the right time in the right way Allowing time No aspect of pressure or coercion In absence of prior consent, we must emphasise to the family that the decision is now for them. 35 Organ Donation Past, Present and Future

36. Planning 36 Organ Donation Past, Present and Future

37. Planning Clip 2 Good planning.mov Embed Clip 2 Or play from video Title 2, Ch 1 – 04:03 – 07:13

38. Confirming understanding and acceptance Donation should not be discussed until the family has accepted the reality of the clinical situation DBD Very strong evidence that failure to comprehend brain death is associated with a ‘no’. Take time. Emphasise death (not its inevitability). Scans and diagrams. DCD Conversation regarding withdrawal of life sustaining treatments. A process but with an end point. More familiar territory. Help understanding that death is inevitable. 38 Organ Donation Past, Present and Future

39. Breaking bad news? Clip 3 Breaking Bad news poor.mov Embed Clip 3 Or play from video Title 2, Ch1 – 08:20 – 10:07

40. Transition/ ‘Decoupling’ At what point to move onto donation? Same conversation or separate? Each family is different. Appreciating when a family have accepted and understood is usually not too hard. 40 Organ Donation Past, Present and Future

41. Ensuring understanding Clip 4 Breaking bad news good.mov Embed Clip 4 Or play from video Title 2, Ch 1 13:20 – 15:40

42. Discussing Donation– usually led by SN-OD Give information first, then seek an answer Specific regarding the benefits, using positive language Avoiding apologetic and negative statements 42 Organ Donation Past, Present and Future

43. Discussing Donation – not on ODR Open, exploratory questions Empower the family – it is their decision (legally) De-emphasise 1 st person aspect 43 Organ Donation Past, Present and Future

44. Raising donation – not on ODR Clip 5 Transition to SNOD not on ODR.mov Embed Clip 5 Or play from video Title 2, Ch 1 17:58 – 19:38

45. Seeking consent – on ODR Consent has been given by the patient. A presumptive, facilitating tone. Organ Donation Past, Present and Future 45

46. Organ Donation Past, Present and Future Registered on ODR Clip 6 Transition to SNOD on ODR.mov Embed Clip 6 Or play from video Title 8 Ch 1 05:50 – 07:21

47. Key Principles Plan Utilise the SN-OD. Take time to ensure full understanding of the clinical reality. Give information positively 47 Organ Donation Past, Present and Future

48. Approaching Families – The Movie 48 Organ Donation Past, Present and Future

49. Summary Our huge family refusal rate is the main reason patients don’t get the transplant they need. Evidence would strongly suggest that many refusals are as a result of us failing to get key aspects of the approach right. A simple 3 stage strategy can ensure our families are cared for and informed. We believe many more will say “Yes” to donation as a result. 49 Organ Donation Past, Present and Future