Donor Family Experience

1. Donor Family Experience Ali Carter & Jessica Gregory SNOD 26th June 2013 SOUTH EAST

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. Transplant Recipient Experience Joanna & Lucie Perry & Jessica Gregory SNOD 26th June 2013 SOUTH EAST

7. Family Approach and Consent Dr Steve Drage, CLOD Dr Paul Murphy, National Clinical Lead for Organ Donation 26th June 2013 SOUTH EAST 7

8. Session Objectives SOUTH EAST 8 Understanding the importance of consent in overall supply of organs for transplantation. Understanding why families say no. Why using a 1st 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. Organ Donation Past, Present and Future

9. Regional Data Dr Steve Drage, Brighton & Sussex University Hospitals, CLOD SOUTH EAST 9

10. Where are potential donors in the South East team lost? SOUTH EAST 10th 10th Conclusion: DBD worse than DCD? 6th 4th 10 Organ Donation Past, Present and Future

11. Consent SOUTH EAST DBD DCD 17% 59% 44% 67% 57% + + = SNOD Doctor SNOD Doctor (58) (68) (89) (56) (78) Eastern Scotland London South West UK

12. 100 92 92 91 88 85 80 83 75 75 75 60 62 58 52 40 % approaches where SN-OD involved 20 0 North South South South South London Eastern Midlands Northern Scotland Yorkshire Northern East West West Wales Ireland Central Team -------- National rate + SOUTH EAST SNOD Doctor DBD 5th 1 April 2012 to 31 March 2013, data as at 4 April 2013 12 Organ Donation Past, Present and Future

13. 100 85 80 83 80 80 76 74 69 65 60 58 % approaches where SN-OD involved 53 53 40 37 20 0 North South South South South London Eastern Northern Scotland Midlands Northern Yorkshire East West West Wales Ireland Central Team -------- National rate + SOUTH EAST SNOD Doctor DCD 2nd 1 April 2012 to 31 March 2013, data as at 4 April 2013 13 Organ Donation Past, Present and Future

14. Approaching the families of potential organ donors Dr Paul Murphy National Clinical Lead for Organ Donation Organ Donation Past, Present and Future 14

15. Consent / authorisation Outline • Background information • Potential Donor Audit data • Legal framework for consent • NICE Short Clinical Guideline • Family approach • Implementation • NHSBT documents • DVD Organ Donation Past, Present and Future

16. 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. Organ Donation Past, Present and Future

17. Potential Donor Audit 2011/12 DBD • If the UK had a 20% family refusal rate • Additional 120 DBD donors • Additional 280 DCD donors • Additional 1200 transplants Organ Donation Past, Present and Future

18. Family refusal rates Organ Donation Past, Present and Future

19. Consent / authorisation rates, 2011-2 UK average (range) 52 (42 - 67)% 64(54 – 78)% Organ Donation Past, Present and Future

20. Legal framework for consent / authorisation • Human Tissue Act 2004 and Human Tissue (Scotland) Act 2006 • Hard opt-in • Role of family • Provide evidence on views of the individual • Assume responsibility for decision making when these views are not known Organ Donation Past, Present and Future

21. Impact of the UK Organ Donor Register? Organ Donation Past, Present and Future

22. Public support? BBC DoNation Survey August, 2005 Organ Donation Past, Present and Future

23. Why do families say ‘no’? Organ Donation Past, Present and Future

24. The family approach: international evidence • Preparation and time • Acceptance of loss • Clarity of language • Understanding concept of brain death • Positive impact of a competent and experienced requestor • Adverse impact of certain kinds of language • Apologetic • Negative Planning Confirming understanding and acceptance of loss Discussing donation Modifiable elements of the family approach Organ Donation Past, Present and Future

25. Consent / authorisation DBD donation Consent rate when SNOD involved Consent rate when SNOD not involved Organ Donation Past, Present and Future

26. Consent / authorisation DCD donation Consent rate when SNOD involved Consent rate when SNOD not involved Organ Donation Past, Present and Future

27. NICE Guidance 1.1.11 A multidisciplinary team (MDT) should be responsible for planning the approach and discussing organ donation with those close to the patient. 1.1.12 The MDT should include: • the medical and nursing staff involved in the care of the patient, led throughout the process by an identifiable consultant • the specialist nurse for organ donation • local faith representative(s) where relevant. Organ Donation Past, Present and Future

28. NICE Guidance 1.1.14 The [multi-disciplinary team] involved in the initial approach should have the necessary skills and knowledge to provide to those close to the patient appropriate support and accurate information about organ donation. 1.1.30 The [multidisciplinary team] involved in the identification, referral to specialist nurse for organ donation, and consent should have the specialist skills and competencies necessary to deliver the recommended process for organ donation outlined in this guideline. Organ Donation Past, Present and Future

29. Guidance from the GMC UK General Medical Council guidance on end of life care , 2010 81. If a patient is close to death and their views cannot be determined, you should be prepared to explore with those close to them whether they had expressed any views about organ or tissue donation, if donation is likely to be a possibility. 82.You should follow any national procedures for identifying potential organ donors and, in appropriate cases, for notifying the local transplant coordinator. Organ Donation Past, Present and Future

30. Involvement of SNOD in approach to families Organ Donation Past, Present and Future

31. UK Donation Ethics Committee Contact between the clinical team treating the potential donor and the SN-OD before the decision has been made to withdraw life-sustaining treatment is ethically acceptable. Advantages include identifying patients who are not suitable donors, and avoiding distressing delays to the family if the SN-OD has to travel some distance to get to the unit Supporting the family through the discussion about organ donation requires a team approach. The SN-OD has the detailed knowledge and expertise to lead the process, but needs to be supported by other members of the clinical team. Organ Donation Past, Present and Future

32. The family approach: 3 key stages Planning Confirming understanding and acceptance of loss As a standard of best practice, the family approach should be a collaborative effort between senior clinical staff and the SN-OD Discussing donation Organ Donation Past, Present and Future

33. Planning the family approach • Establish the team: • Consultant • SN-OD • Bedside nurse • Meet in private • Clarify clinical situation • Seek evidence of prior consent Planning The planning phase is possibly the most important element of the approach. SN-ODs are very well placed to reinforce the key elements of best practice. Organ Donation Past, Present and Future

34. Planning the family approach Planning Key family members by name Key family issues Agree timing and setting, ensuring these are appropriate to family needs Involve others as required, eg faith leaders The specialist nurse can help to identify families who have yet to understand and / or accept the inevitability of their loss. Organ Donation Past, Present and Future

35. Planning the family approach Planning • Agree a process of approach and who will be involved • how will team members be introduced • who will lead the initial discussion (breaking bad news) • how will the transition to donation be made Although clinical circumstances vary, as a standard SN-ODs should be involved in planning the family approach and subsequent contact with the family Organ Donation Past, Present and Future

36. Planning Planning Clip 2 Good planning.mov Embed Clip 2 Or play from video Title 2, Ch 1 – 04:03 – 07:13 Organ Donation Past, Present and Future

37. Confirming understanding Planning • introducing the SN-OD • assessing understanding • brain-stem death • de-coupling Confirming understanding and acceptance of loss It is vital that staff explicitly consider whether a family have understood and accepted their loss, and are thereby ready to make the transition to donation. Organ Donation Past, Present and Future

38. Introducing the specialist nurse Planning Clip1 introducing SNOD.mov Embed Clip 1 Or play from Video: Title 2, Ch 1 – 11:40 – 12:00 Organ Donation Past, Present and Future

39. Introducing the SN-OD Planning “Mrs Smith, this is Louise Green, she is a specialist nurse that we work with on the unit and who helps support families at this time.” Confirming understanding and acceptance of loss There is no evidence that families recognise a conflict when meeting the SN-OD at this time. Organ Donation Past, Present and Future

40. Confirming understanding Planning • introducing the SN-OD • assessing understanding • brain-stem death • de-coupling Confirming understanding and acceptance of loss It is vital that staff explicitly consider whether a family have understood and accepted their loss, and are thereby ready to make the transition to donation. Organ Donation Past, Present and Future

41. Breaking bad news? Clip 3 Breaking Bad news poor.mov Embed Clip 3 Or play from video Title 2, Ch1 – 08:20 – 10:07 Organ Donation Past, Present and Future

42. Ensuring understanding Clip 4 Breaking bad news good.mov Embed Clip 4 Or play from video Title 2, Ch 1 13:20 – 15:40 Organ Donation Past, Present and Future

43. Assessing understanding Planning “I know you have been through a great deal in the last few days, but can you briefly tell me what your understanding of what the situation is and what has happened to John up until now?” Confirming understanding and acceptance of loss It is often useful to ask a family lead to explain their current understanding of a loved one’s condition. Organ Donation Past, Present and Future

44. De-coupling Planning “I can see that you are finding this really difficult to come to terms with and I am sure you need some time on your own to talk about I’ve just told you. So I will come back a bit later.” Confirming understanding and acceptance of loss Families are hardly likely to consider a post-mortem intervention if they have yet to accept the death of a loved one. Organ Donation Past, Present and Future

45. Discussing donation • making the transition • the implications of prior first person consent • careful use of language • positive vs negative • open vs closed questions • anticipation of common concerns Planning Confirming understanding and acceptance of loss Discussing donation Organ Donation Past, Present and Future

46. 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 Organ Donation Past, Present and Future

47. Making the transition Planning “I would like to talk to you now about something you might not be expecting, and that is organ donation. Tonight, John has the opportunity to save and transform the lives of several people.” Confirming understanding and acceptance of loss Discussing donation Who mentions ‘donation’ for the first time is less important than when and how it is introduced Organ Donation Past, Present and Future

48. Discussing donation Planning “Louise here has expertise in this area, and I am now going to hand over to her.” Confirming understanding and acceptance of loss Discussing donation Who mentions ‘donation’ for the first time is less important than when and how it is introduced Organ Donation Past, Present and Future

49. Patient’s wishes are not known Planning “Mrs Smith, do you know whether your husband wanted to be an organ donor when he died?” “Mrs Smith, tell me what your husband wanted to happen when he died.” Confirming understanding and acceptance of loss Discussing donation The law passes authority for decision making onto the family when the patient’s wishes are unknown Organ Donation Past, Present and Future

50. Patient’s wishes are not known Planning “Mrs Smith, do you know whether your husband wanted to be an organ donor when he died?” “Mrs Smith, tell me what your husband wanted to happen when he died.” X Confirming understanding and acceptance of loss Discussing donation The law passes authority for decision making onto the family when the patient’s wishes are unknown Organ Donation Past, Present and Future