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Donor Family Experience

Donor Family Experience. Pat Collins and Paula Aubrey. Another family’s story…. 3. Organ Donation Past, Present and Future .

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Donor Family Experience

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  1. Donor Family Experience Pat Collins and Paula Aubrey

  2. 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.”

  3. 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.”

  4. Family Approach and Consent Dr Phil Hopkins Dr Gus Vincent 4th June 2013 LONDON 5

  5. Session Objectives 6 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

  6. Regional Data Phil Hopkins Clinical Lead Organ Donation Kings College Hospital, London LONDON 7

  7. Regional Data Phil Hopkins Clinical Lead Organ Donation Kings College Hospital, London LONDON 8

  8. Where are potential donors in London lost? 12th 12th Conclusion: What’s happening with DBD? 4th 7th 9 Organ Donation Past, Present and Future

  9. Consent LONDON DBD DCD 56% 50% 64% 58% 54% + + + + + = SNOD Doctor SNOD Doctor (58) (68) (89) (56) (78) Eastern Scotland London South West UK

  10. 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 Eastern London Midlands Northern Scotland Yorkshire Northern East West West Wales Ireland Central Team -------- National rate + SNOD Doctor DBD LONDON 1 April 2012 to 31 March 2013, data as at 4 April 2013 11 Organ Donation Past, Present and Future

  11. 100 85 80 83 80 80 76 74 69 65 60 % approaches where SN-OD involved 58 53 53 40 37 20 0 North South South South South Eastern London Northern Scotland Midlands Northern Yorkshire East West West Wales Ireland Central Team -------- National rate + SNOD Doctor DCD LONDON 1 April 2012 to 31 March 2013, data as at 4 April 2013 12 Organ Donation Past, Present and Future

  12. DBD consent/authorisation rate by ethnic group 1 April 2012 to 31 March 2013, data as at 4 April 2013 13 Organ Donation Past, Present and Future

  13. DCD consent/authorisation rate by ethnic group 1 April 2012 to 31 March 2013, data as at 4 April 2013 14 Organ Donation Past, Present and Future

  14. Best Practice in Family Approach and Consent Dr Angus Vincent Northern Regional CLOD LONDON 15

  15. 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

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

  17. 2011/12 data Combined 55% consent 45% family refusal Organ Donation Past, Present and Future

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

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

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

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

  22. 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 Organ Donation Past, Present and Future

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

  24. 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) Organ Donation Past, Present and Future

  25. 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  Organ Donation Past, Present and Future

  26. 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). Organ Donation Past, Present and Future

  27. 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. Organ Donation Past, Present and Future

  28. 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 Organ Donation Past, Present and Future

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

  30. 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 Organ Donation Past, Present and Future

  31. Best Practice Guidance on the Family Approach Dr Angus Vincent 32

  32. 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?) Organ Donation Past, Present and Future

  33. 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. Organ Donation Past, Present and Future

  34. 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 Organ Donation Past, Present and Future

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

  36. Introducing the specialist nurse Planning Clip1 introducing SNOD.mp4 Embed Clip 1 Or play from Video: Title 2, Ch 1 – 11:40 – 12:00 Organ Donation Past, Present and Future

  37. 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. Organ Donation Past, Present and Future

  38. Planning Organ Donation Past, Present and Future

  39. Planning Planning Clip 2 Good planning.mp4 Embed Clip 2 Or play from video Title 2, Ch 1 – 04:03 – 07:13 Organ Donation Past, Present and Future

  40. 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. Organ Donation Past, Present and Future

  41. Breaking bad news? Clip 3 Breaking Bad news poor.mp4 Embed Clip 3 Or play from video Title 2, Ch1 – 08:20 – 10:07 Organ Donation Past, Present and Future

  42. 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. Organ Donation Past, Present and Future

  43. Ensuring understanding Clip 4 Breaking bad news good.mp4 Embed Clip 4 Or play from video Title 2, Ch 1 13:20 – 15:40 Organ Donation Past, Present and Future

  44. 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 Organ Donation Past, Present and Future

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

  46. Raising donation – not on ODR Clip 5 Transition to SNOD not on ODR.mp4 Embed Clip 5 Or play from video Title 2, Ch 1 17:58 – 19:38 Organ Donation Past, Present and Future

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

  48. Registered on ODR Clip 6 Transition to SNOD on ODR.mp4 Embed Clip 6 Or play from video Title 8 Ch 1 05:50 – 07:21 Organ Donation Past, Present and Future

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

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