1. Professional Development Programme for Organ Donation 1 Paul Murphy Gurch Randhawa Ella Poppitt November 2010 Authorisation for organ donation 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. Professional Development Programme for Organ Donation 4 By the end of this session, participants will gain an understanding of the importance of the timing of referral of a potential donor that increases in consent rates are achieved through improvements in family approach, not through an increase in public awareness that the potentially modifiable factors that determine the outcome of the family approach include planning of the approach and being trained to make the request the potential role for SN-ODs in supporting the approach to the family for consent /authorisation of the cultural and religious implications of donation after death and the need to modify a standard family approach in recognition of such influences Masterclass Objectives

5. Identification, referral and consent / authorisation An overview Dr Paul Murphy 5

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 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.

7. 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 7 International evidence suggests that timely identification and referral may improve all facets of the donation pathway, and thereby increases the possibility of an individuals desire to donate being identified and fulfilled.

8. Professional Development Programme for Organ Donation 8 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

9. Professional Development Programme for Organ Donation Understanding the bigger picture 9 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

10. Consent / authorisation for donation 10

11. Professional Development Programme for Organ Donation 11 Family Consent / Authorisation UK average of 62% for DBD and 58% for DCD – much lower in some BMEs range of 53 – 88% for DBD considerably lower than the apparent levels of public support for donation There is substantial international evidence for modifiable factors within the family approach that are independent of legislative framework for consent / authorisation

12. Professional Development Programme for Organ Donation 12 Family Consent / Authorisation Whilst raising family consent rates appears to be our biggest single opportunity, it is arithmetically impossible for consent rates alone to account for all the differences between the UK and countries with the highest donation rates

13. Professional Development Programme for Organ Donation 13 What is the relevant law in Scotland? There are more similarities between the Human Tissue Act (2004) and the Human Tissue (Scotland) Act than differences Human Tissue (Scotland) Act 2006 addresses the removal and use of organs and tissues from deceased persons Uses the concept of authorisation rather than that of consent. Operates within a general donation framework similar to rest of UK Has separate provisions relating to 16 year olds and 12 – 16 year olds

14. Professional Development Programme for Organ Donation 14 Who is able to give authorisation in Scotland? Authorisation may be given by the adult person or, where no such authorisation has been given, by the adults nearest relative The nearest relative may not give authorisation if he or she has actual knowledge that the person was unwilling that the body (or the relevant part) be used for transplantation Authorisation may be in writing or expressed verbally (and signed in the case of a nearest relative) Human Tissue (Scotland) Act 2006 gives primacy to the wishes of the individual, however they have been stated or recorded. Families have no authority in law to overrule the wishes of an individual to donate in the event of his / her death.

15. Professional Development Programme for Organ Donation 15 If no decision is made, how can authorisation be given in Scotland? 1.Spouse or civil partner 2.Living with the adult as husband or wife or in a relationship which had the characteristics of the relationship between civil partners and had been so living for not less than 6 months; 3.Child 4.Parent 5.Brother or sister 6.Grandparent 7.Grandchild 8.Uncle or aunt 9.Cousin 10.Niece or nephew 11.A friend of longstanding of the adult Nearest Relatives for Adults in Scotland: (The ordering of the relatives below must be respected when looking for consent from nearest relatives) The table below highlights the nearest relatives for adults in Scotland Families in Scotland are required to sign a written declaration that indicating that they have overruled the legal authorisation of their loved one.

16. Professional Development Programme for Organ Donation 16 UK Organ Donor Register Registration with the ODR is viewed as consent by the Human Tissue Act (2004) and as authorisation for donation by the Human Tissue (Scotland) Act 2006. origin : 1994 1 million registrants added each year little apparent effect of media campaigns or adverse publicity maintained by NHS BT can be accessed 24 / 7 via SNO-OD or directly through the Duty Office at ODT on 0117 9757575

17. Professional Development Programme for Organ Donation 17 UK Organ Donor Register Any clinician can access the ODR by calling the Duty Office on 0117 9757575. Details of registration can be faxed to clinical areas. registrations are generally en passant events –DVLA –GP registration form –Boots Advantage Card details of registrations confirmed by post, and includes a donor card registration with the ODR may become part of the QOF from primary care

18. Professional Development Programme for Organ Donation 18 UK Organ Donor Register Any clinician can access the ODR by calling the Duty Office on 0117 9757575. Details of registration can be faxed to clinical areas. average age of registration significantly lower than the mean age for donation (which is rising) immediate impact of ODR on donation rates is uncertain ODR should be viewed as a medium term strategy whilst only minority of donors are on the ODR, the help that it makes in decision making should not be underestimated

19. Professional Development Programme for Organ Donation 19 Use of the ODR in the family approach www.organdonation.nhs.uk/ukt/about_us/professional_development_progra mme/pathways.jspwww.organdonation.nhs.uk/ukt/about_us/professional_development_progra mme/pathways.jsp. The Human Tissue Act 2004 and the Human Tissue (Scotland) Act 2006 give primacy to the wishes of the individual. Before approaching a family, clinicians should confirm whether their patient is on the ODR since this has a direct influence on the subsequent approach to the individuals next of kin.

20. Professional Development Programme for Organ Donation 20 Any clinician can access the ODR by calling the Duty Office on 0117 9757575. Details of registration can be faxed to clinical areas. Information required to access ODR: Patient name Patient date of birth Patient address including postcode Contact details, including the name of the hospital and specific clinical area. Use of the ODR in the family approach

21. Professional Development Programme for Organ Donation 21 Presumed Consent A system of this kind seems to have the potential to close the aching gap between the potential benefits of transplant surgery in the UK and the limits imposed by our current system of consent Gordon Brown January 2008 The systematic literature review showed an apparent association between higher donation rates and opt out systems in countries around the world…………. ODTF, November 2008

22. Professional Development Programme for Organ Donation 22 Consent for Donation hard opt out system Organs retrieved from deceased adults unless they have registered to opt out. Family unable to object even if they are aware of deceased wishes not to donate. Examples: Austria, Singapore soft opt out system Organs retrieved from deceased adults unless they have registered to opt out. Families have the right to object, although requirements to consult the family vary. Examples: Spain, Belgium hard opt in system Organs can be retrieved from adults who have registered a wish to donate. Relatives are not able to oppose these wishes. soft opt in system Organs can be retrieved from adults who have registered a wish to donate. It is normal practice to consult with families and allow them to oppose donation. Examples: UK, USA, Australia Presumed consent is something of a misnomer. The Taskforce prefers to use the term opt out. ODTF, November 2008

23. Professional Development Programme for Organ Donation 23 The Taskforces enquiry into opting out The Taskforces members came to this review of presumed consent with an open mind. ODTF, November 2008 Will presumed consent be effective? Are there any ethical and legal obstacles? Will presumed consent be acceptable to –healthcare professionals? –general public? –patients and their families? What are the practicalities? –timescales –costs

24. Professional Development Programme for Organ Donation 24 Presumed Consent in Spain Spain does not have an opt-out register, nor does the Organización Nacional de Trasplantes promote public awareness of the 1979 presumed consent legislation,Organización Nacional de Trasplantes or mention the legislation to families of potential donors. Rafael Matesanz Presumed consent enacted in 1979; no change in donation rates for the decade that followed Little operational impact upon how families are approached Spanish model applied successfully elsewhere without it

25. Professional Development Programme for Organ Donation 25 Conclusions of the ODTF on opting out The more the Taskforce examined the evidence, the less obvious the benefit [of an opt out system] was revealed to be. ODTF, November 2008 distract attention away from essential improvements to systems and infrastructure and from the urgent need to improve public awareness and understanding of organ donation. challenging and costly to implement successfully. no convincing evidence that it would deliver significant increases in the number of donated organs. opt out systems should be reviewed in five years time in the light of success achieved in increasing donor numbers through implementation of the 14 recommendations of the [original Taskforce report].

26. Professional Development Programme for Organ Donation 26 Improved family consent rates information discussed during the request perceived quality of care of the donor understanding of brain stem death specific timing of the request setting in which the request is made the approach and skill of the individual making the request. ensuring that adequate time is available both to make the request and to allow families to consider the request also The current literature comes almost exclusively from the US. The donation rates seen in many of these studies are higher than those in the UK, so there is some reason to believe that similar strategies might have an even larger effect in the UK,

27. SME: consent / authorisation Master Class Ella Poppitt 27

28. Professional Development Programme for Organ Donation 28 Background to Co-ordination service in relation to consent / authorisation Approaches to consent / authorisation Long contact Planned approach / Collaborative approach International evidence for practice Evidence from IHC model The process of consent / authorisation Session Outline

29. Professional Development Programme for Organ Donation 29 UK Co-ordination Service: Historical Development Weaknesses First co-ordinator appointed in 1979 Developed historically in an ad hoc manner In response to local transplant need rather than as a systematic approach to co- ordination service Late 70s DTCs locally employed within trusts that have a transplant programme Early role – recipient orientated, minimal responsibility /time spent on ICUs Donors facilitated from a distance until mid 80s Dual role development

30. Professional Development Programme for Organ Donation 30 xxx 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? Historical Point of referral to Co-ordinator staff

31. Professional Development Programme for Organ Donation 31 Baseline PDA Data from 2003/04 A transition from 2003/4 to the ODFT 30% - patients BSD likely never tested 8% - no record of donation considered 7% families of BSD patients not approached 84% cases no DTC involvement in approach Organ Donation Task Force Established in 2007, Report Published in 2008

32. Professional Development Programme for Organ Donation 32 ODTF: Clinical Collaboration Collaborative of embedded donor co-ordinators and clinical champions Recommendation 1 and 9 UK wide ODO established – responsibility of NHSBT. Additional co-ordinators, embedded within critical care areas, should be employed… There should be a close and defined collaboration between donor co-ordinators, clinical staff and donation champions

33. Professional Development Programme for Organ Donation 33 At the January 2007 Taskforce meeting there were presentations from Rafael Matesanz and Francis Delmonico from Spain and the US. It was agreed that US and Spain have had major success in increasing their rates of organ donation. It was acknowledged that their legal environments, cultural and societal influences were different. However, the similarities were important and included: ODTF Report: Findings From International Models of Practice 1.Clear and visible leadership within organ donation. 2.Identification of clear roles and responsibilities throughout out the donation pathway. 3.A holistic view of the donation pathway, ensuring that each step is properly managed and measured. 4.Recognition of the important contribution made by all on the donation pathway. 5.The need to establish a culture whereby organ donation is the routine, rather than the exception.

34. International Models and consent / authorisation for organ donation

35. Professional Development Programme for Organ Donation 35 Organ Donation: The Spanish Approach Recognising the importance of a central co-ordinating organisation Structured a co-ordinator network that focuses on performance, but recognises: The contribution that doctors make in increasing organ donation. That DTCs within hospitals can have a bigger impact than those coming in from outside. They havent relied upon changes to the legislation and donor registries to increase donation. Hospitals are compensated for the effort and resources they put in to organ donation, Organ donation features as a main part of doctors training. Each step on the donation pathway is audited and measured, e.g. the declaration of brain stem death. The appropriate use of organs from more elderly donors. It was also noted that, according to Rafael Matesanz:...of the British who died in Spain in 2005 all, who were eligible for donation (41 in total), went on to become organ donors.

36. Professional Development Programme for Organ Donation 36 Organ Donation: The US Approach To take a very direct approach as to what is expected from hospitals, this is included in agreements with hospitals. Clear goals along the wider transplantation pathway, including the number of donors and transplants. Increased quality and quantity of life after transplant and cost efficiency Clear guidance on death and when donation is appropriate. Robust infra-structure from donation to transplantation. Cumulated in The Collaborative

37. Professional Development Programme for Organ Donation 37 Organ Donation Breakthrough Collaborative Agreed definitions for donation Examined and shared the identified best practices Defined clear goals and timeline and points of measurement along the donation pathway Created a collaborative environment for practice: Locally based OPO staff in hospitals: Long Contact Rapid,early referral, linkage and planning of approach (the team huddle) Integrated management of donation process Pursuit of every donation opportunity

38. Professional Development Programme for Organ Donation 38 International Practice: The Role of the SN-OD Seen as part of clinical team Ability to develop & maintain consistent working relationships Improve Donation Systems Provide immediate on site management Intrinsically involved in family approach Ability to instigate early & extended contact In having trained co-ordinators located directly within donation centres, who are linked to the regional co-ordinators. They have a sense of involvement and active participation in the whole donation process Matesanz et al 2003 The Spanish, Italian & US models all focussed on placing the responsibility for donation on Co- ordinators who are located directly within the donor hospital

39. Professional Development Programme for Organ Donation 39 Long Contact: Early and Extended Interaction with Families Impact of DTC presence during brain death discussion and time spent with families: Co-ordinator present during brain death discussion consent / authorisation rate 63% vs. 34% < 30 mins consent / authorisation rate 46% > 30 mins consent / authorisation rate 62% > 3 hrs consent / authorisation rate 75 % (Shafer 2004)

40. Professional Development Programme for Organ Donation 40 Impact of Hospital Based Co-ordinators Spain 1989 14 donors pmp 1999 33 donors pmp Matesanz 2004 Northern Italy 1997 8 donors pmp 2005 30 donors pmp Simini 2001 US 55% increase in donation in States with an IHC intervention Shafer 2004

41. What Do We Know About consent / authorisation For Organ Donation: Factors and Evidence to Consider

42. Professional Development Programme for Organ Donation 42 Factors influencing relatives decision for organ donation Concrete knowledge of deceased wishes regarding donation Extended families view of donation Giving meaning to death Things that happened in hospital that were perceived as positive or negative Information discussed during the request Perceived quality of care for the potential donor Understanding of brain death Specific timing of the request Setting in which the request is made Approach and expertise of the individual making the request (Simpkin et al, 2009 BMJ Systematic review)(Sque & Long 2003)

43. Professional Development Programme for Organ Donation 43 Factors That Predispose Families to Say Yes to Donation The family understands there is no hope for their loved ones survival; They feel their loved one received good care; They feel well-treated at hospital; The approach is timed on the basis of the familys readiness, not the staffs readiness; They are given adequate information about donation; They had previously discussed donation with the donor (VWV 2010)

44. Professional Development Programme for Organ Donation 44 Research That Links Adequate Information to consent / authorisation for Donation Families who spend more time in the conversation and discussed more issues were 5 times more likely to donate (Siminoff, 1995) Compared to non-donor families, donor family members were significantly more likely to feel they were given enough information to make a decision and that the information was presented clearly. (Rodrigue, Scott & Oppenheim, 2003) The increased time with the family directly influenced the number of topics discussed and families consent / authorisation to donation (Siminoff et al, 2009)

45. Professional Development Programme for Organ Donation 45 Research Linking Family Understanding of Death to consent / authorisation for Donation Donor Families Non-Donating Families Understood love one is dead before request (Franz, 1997) 83%56% Known death was near when asked about donation (DeJong, 1998) 69%46% Accepted brain death as death (Siminoff, 2003) 62.5%40% Understood brain death (Rodrigue, 2006) 70.5%29%

46. Professional Development Programme for Organ Donation 46 Research Linking Co-ordinator Involvement with Increase in consent / authorisation Rates for Organ Donation ResearcherXXXconsent / authorisation Rate Klieger, 1994Doctors Coordinators Working collaboratively 9% 67% 75% Siminoff et al, 1995Families who meet with OPO requesters 3 times more likely to donate Beasley, 1997 Coordinators Hospital Staff 74% 25% Gortmaker et al, 1998Doctors Coordinators Working collaboratively 53% 62% 72% Siminoff, 2001Talking to coordinator before being asked to make a decision strongly associated with consent / authorisation Rodrigue et al, 2008Coordinators All others without coordinator present 72% 37% ACRE, 2009No significant difference between 2 groups

47. Professional Development Programme for Organ Donation 47 ACRE Trial Findings & Conclusions: Concluded that more focus should be on long contact where the Specialist Nurse for Organ Donation is involved with the family before the approach is made. Anecdotal reports also suggested that the trial itself had improved the relationship between intensive care unit staff and Specialist Nurses for Organ Donation. Young et al. Effect of collaborative requesting on consent / authorisation rate for organ donation: randomised controlled trial (ACRE). BMJ, 339,b3911, 2009. Randomised Controlled Trial Showed no increase of consent / authorisation rates for organ donation when collaborative requesting was used in place of routine requesting by the patients physician. Did not support either collaborative or medical requesting. To determine whether collaborative requesting increased consent / authorisation for organ donation from the relatives of patients declared dead by BSD criteria

48. Professional Development Programme for Organ Donation 48 ACRE Trial – Results Patients randomised (n = 201) Allocated to Collaborative Requesting (n = 100) Received allocated intervention (n = 67) consent / authorisations to donation when followed allocated intervention = 45/67 Allocated to Routine Requesting (n = 101) Received allocated intervention (n = 73) consent / authorisations to donation when followed allocated intervention = 44/73 Proportion of relatives consenting / authorising to organ donation 60.2% Proportion of relatives consenting/ authorising to organ donation 67.1% NSD (p=0.4)

49. Long Contact and the In-house Co- ordinator model in the UK

50. Professional Development Programme for Organ Donation 50 UK: In-house Specialist Nurse for Organ Donation Data In-house Specialist Nurse for Organ Donation (SNOD) data was collected over the period 2008-09 in 14 Trusts Units which already had established embedded Specialist Nurses for Organ Donation did not take part in the ACRE study. Families who initiated conversations were excluded. 68% families consent / authorisationed when a SNOD was involved 43% no SNOD involved HospitalsSNOD Involved No SNOD Involved 1 (N=15)100%56% 2 (N=19)100%50% 3 (N=10)89%0% 4 (N=16)83%30% 5 (N=14)77%0% 6 (N=30)74%57% 7 (N=45)69%56% 8 (N=43)68%50% 9 (N=37)66%13% 10 (N=35)66%0% 11 (N=15)64%25% 12 (N=7)60%100% 13 (N=33)50%40% 14 (N=19)44%33% consent / authorisation Rates (N=337)

51. Professional Development Programme for Organ Donation 51 The Basis for NHSBTs Strategy for consent / authorisation / Authorisation: IHCs Based on applicable and transferrable elements of other international models. Incorporated strategies and initiatives from evidence in existing research. Existing evidence suggested that involvement of a SN-OD in the request process correlated with higher rates of consent / authorisation. ­ No evidence has advocated a solely medical model for consent / authorisation A strategy to engender collaborative working practices has internationally produces higher rates of donation. Core Objective: The Approach for donation should be planned collaboratively between the clinical staff and the SN-OD prior to a joint approach being made.

52. Professional Development Programme for Organ Donation 52 Short and Long Contact: Models of Practice INFORMAL CONTACT/ BEDSIDE CONVERSATIONS CONFIRMATORY CONVERSATION(S) as needed DONATION CONVERSATION DEATH CONVERSATIONS SHORT CONTACT MODEL Historically where SN-OD entered the donation discussion LONG CONTACT MODEL By employing long contact the SN-OD engages earlier with the family and has an extended period of interaction to build up visibility and rapport with the NOK

53. Professional Development Programme for Organ Donation 53 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? An outstanding challenge is to adopt this approach across all critical care areas in the UK Co-ordinator Strategy to ensure early referral to Co-ordinator staff: implemented and reinforced by ODTF document Short and Long Contact: Models of Practice

54. UK Potential Donor Audit Data and consent / authorisation

55. Professional Development Programme for Organ Donation 55 Rates of Referral to SN-OD for Donation (ODT, PDA data 2003-2009) ODTF aspiration to achieve 100% rate of referral to Co-ordinator Referral rates have dramatically increased 21.5% 75.2%78.4% 82.5% 85.2%88% 89%

56. Professional Development Programme for Organ Donation 56 SN-OD Involvement in the Request for Donation (ODT, PDA data 2003-2009) Increasing rates of Co-ordinator involvement in request for donation. Challenge is to maximise this further ensuring a trained professional is always involved in the approach for donation. 31% 16.9% 18.4% 22.7% 31.2% 39.3% 46.5% 45.2%

57. Professional Development Programme for Organ Donation 57 consent / authorisation Rate for Donation when SN-OD Involved in Request 31% (ODT, PDA data 2003-2009) ; NB Excludes families that initiated the approach

58. The process of consent / authorisation

59. Professional Development Programme for Organ Donation 59 NHSBT Education & Training Programme Delivered by trainers from the US Delivery of training programme to all SN-ODs ­ Clinicians Workshops consent / authorisation / Authorisation & Hospital Development Based on a very specific model aimed at addressing: ­ Addressing specific needs/concerns ­ Probing techniques ­ Using open ended questioning techniques ­ Validating the families decision Continually updated/modified to UK data from the PDA

60. Professional Development Programme for Organ Donation 60 SN-OD Approach to the Donation Conversation Aim: To gain a definite Yes or No to donation based on accurate information and discussion

61. Professional Development Programme for Organ Donation 61 Principles of the Donation Conversation Confirming Assessing Educating Surfacing Core Concerns Providing consent / authorisation Bringing to Conclusion Conversational Bridge into the subject of donation The donation discussion should not be based on a Yes/ No approach, information should always be given to enable the family to make a fully informed decision A higher rate of consent / authorisation is evident when the family feel that they have received enough information to make an informed decision about organ donation (Rodrigue et al, 2006; Rosel et al; 1999

62. Professional Development Programme for Organ Donation 62 SN-OD Training: Points Advised to Note in the Donation Conversation Suggested behaviours/ languageBehaviours/Language to avoid Display EmpathyEncouraging hope Say machine is pumping air Avoid technical jargon i.e. Machine is breathing We hoped the machine would keep him alive Saying the machine is keeping him alive Talk to the familyTalking to the body Alternate good and bad news Telling the family you have a requirement to ask about donation Progressively depersonalize Toms heart, Your sons heart, His heart, The heart... Be consistent

63. consent / authorisation: Where are we now?

64. Professional Development Programme for Organ Donation 64 New Potential Donor Audit Data (Oct 2009-April 2010) Neurological death testing rate (%) DBD referral rate (%) DBD approach rate (%) DBD consent / authorisati on rate (%) consent / authorisation rate where a SN- OD was involved in the approach consent / authorisation rate where no SN-OD was involved in the approach 76.686.29363.270.151.3 DCD referral rate (%) DCD approach rate (%) DCD consent / authorisati on rate (%) consent / authorisation rate where a SN- OD was involved in the approach consent / authorisation rate where no SN-OD was involved in the approach 30.827.655.667.842.6 PDA revised in line with Donation Advisory Group membership in 2009

65. Professional Development Programme for Organ Donation 65 Public Support for Organ Donation Remains High www.organdonor.gov/survey2005 The challenge is to translate such widespread support into consent / authorisation for organ donation

66. Professional Development Programme for Organ Donation 66 The Future... NICE guidance pending ­ Applications for membership ­ Role of NICE guidance and adoption in practice Realising the ODTF recommendations and progress towards achieving desired outcomes. Further developing the role and involvement in each approach for donation of the expanded workforce of SN-ODs. Ensuring opportunities for obtaining consent / authorisation /authorisation for organ donation are maximised at every opportunity, every time. Ensure a long term collaborative working relationship is established between SN-ODs, CL-ODs and the clinical environment.

67. Break 67

68. Organ donation in a multi-ethnic and multi-faith context Professor Gurch Randhawa Director, Institute for Health Research University of Bedfordshire 68

69. Professional Development Programme for Organ Donation 69 Introduction Although over 3,000 people in the UK received an organ transplant in 2007/08, another 1,000 died after having waited in vain on the waiting list, which currently numbers over 8,000 people. Data relating to organ donor waiting lists and organ donors highlights significant disparities between ethnic groups. For instance, UK data shows that people of South Asian (Indian, Pakistani, Bangladeshi or Sri Lankan origin) or African-Caribbean descent are three to four times more likely than white people to develop end-stage renal disease, largely because of the higher prevalence of type 2 diabetes UK data shows them to make up 23% of the kidney waiting list but 8% of the population. A further concern is that only 3% of donors are from these communities. UK Potential Donor Audit shows a 40% family refusal rate for White families and 70% refusal rate among non-White families

70. Professional Development Programme for Organ Donation 70 Ethnicity of deceased solid organ donors in the UK 1 April 2007–31 March 2009 Ethnicity2007-20082008-2009 UK Population N%N% White77796.085795.292.1 Asian131.6171.94 Black111.4131.42 Chinese10.120.20.4 Other70.9111.21.5 TOTAL809900

71. Professional Development Programme for Organ Donation 71 Ethnicity of deceased heartbeating kidney donors and recipients (1 April 2007 – 31 March 2009) and transplant list patients at 31 March in the UK EthnicityDonorsTransplant recipients Active transplant list patients UK pop. 2007-20082008-20092007-20082008-200920082009 N%N%N%N%N%N% White56895.655494.993483.586779.1529876.0537874.892.1 Asian101.7122.11019.013812.699814.3107715.04 Black111.971.2625.5706.45077.35527.72 Chinese10.220.3100.980.7741.1781.10.4 Other40.791.5111.0131.2981.41041.41.5 Not reported 0-0-0-0-5-1-- TOTAL 5945841118109669807190

72. Professional Development Programme for Organ Donation 72 Ethnicity of deceased heartbeating pancreas donors and recipients, 1 April 2007-31 March 2009, and transplant list patients at 31 March in the UK EthnicityDonorsTransplant recipients Active transplant list patients UK pop. 2007-20082008-20092007-20082008-200920082009 N%N%N%N%N%N% White28794.129495.519593.315892.420092.627493.592.1 Asian62.031.094.384.7156.9134.44 Black82.641.321.031.810.520.72 Chinese10.31 21.000.00 0 0.4 Other31.061.910.521.200.041.41.5 TOTAL305308209171216293

73. Professional Development Programme for Organ Donation 73 Ethnicity of cardiothoracic donors and recipients 1 April 2007-31 March 2009, and transplant list patients at 31 March in the UK EthnicityDonorsTransplant recipients Active transplant list patients UK pop. 2007-20082008-20092007-20082008-200920082009 N%N%N%N%N%N% White 19493.723995.623794.425492.035793.530394.192.1 Asian 31.441.683.2114.0112.9123.74 Black 52.420.841.662.2102.641.22 Chinese 00.010.41 31.110.31 0.4 Other 52.441.610.420.730.820.61.5 TOTAL207250251276382322

74. Professional Development Programme for Organ Donation 74 Ethnicity of liver donors and recipients 1 April 2007-31 March 2009, and transplant list patients at 31 March in the UK EthnicityDonorsTransplant recipients Active transplant list patients UK pop. 2007-20082008-20092007-20082008-200920082009 N%N%N%N%N%N% White62194.566193.054983.255979.722282.828484.092.1 Asian142.1233.2659.89113.02810.43410.14 Black132.091.3284.2263.793.492.72 Chinese10.210.160.96 00.020.60.4 Other81.2172.4121.8192.793.492.71.5 TOTAL657771660701268338

75. Professional Development Programme for Organ Donation 75 Time actively registered on list for kidney transplant, UK (1998-2000) Ethnic origin Average wait median (days) White722 South Asian1496 Black1389 Other948 Non white communities have to wait twice as long for a kidney transplant The average wait for white communities is 2 years for a kidney transplant versus 4 years for non white communities

76. Professional Development Programme for Organ Donation 76 Relatives concerns about deceased donation Which organs will be donated? Who will receive the organs? Will the fact that consent / authorisation has been given affect the treatment the patient receives? Will the patient really be dead when the organs are removed? Will the organs be used for research? Will the body be damaged by organ donation? Will the funeral/cremation be delayed?

77. Professional Development Programme for Organ Donation 77 Relatives fears with deceased donation Fear of death may act as a barrier to thinking about or discussing donation The removal of organs after death may be seen as violating the sanctity of the deceased There may be a wish to bury or cremate the loved one whole and therefore cutting up the body may be frowned upon People may feel unhappy about their loved ones organs being inside another person Fears may exist that the intensive care staff will not try as hard to save the patient if it is known that consent / authorisation for organ donations has been given Religion could be a predisposing factor as it may be felt that cadaveric transplants violate religious principles Source: Randhawa (1995)

78. Professional Development Programme for Organ Donation 78 What does the research say? I would not donate my eyes, ever, because of the ceremony prior to cremation when people come to the funeral to see the body. I dont want to not have any eyes. If the religious leaders gives us a clear cut opinion on this matter then we have less confusion. Religion is for people to live well; it shouldnt be an obstacle to something positive like organ donation. More discussion and information will help us to proceed in this direction. I dont like the idea of my relatives having to see my body been carved up. Im not sure about life after death, but if there is life I want to go complete. They (South Asian families) look after their own dont they. Davis & Randhawa (2004); Randhawa (1998d)

79. Professional Development Programme for Organ Donation 79 Islam and Organ Donation Whosoever saves the life of one person it would be as if he saved the life of all mankind. Revelation, Chapter 21, verses 4 and 5 If you happened to be ill and in need of a transplant, you certainly would wish that someone would help you by providing the needed organ. Sheikh Dr M A Zaki Badawi, Principal, Muslim College, London

80. Professional Development Programme for Organ Donation 80 Christianity and Organ Donation In eternity we will neither have nor need our earthly bodies: former things will pass away, all things will be made new. Holy Quran, chapter 5, vs 32 Every organ transplant has its source in a decision of great ethical value…. Here lies the nobility of a gesture which is a genuine act of love. There is a need to instil in peoples hearts a genuine and deep love that can find expression in the decision to become an organ donor. His Holiness Pope John Paul II

81. Professional Development Programme for Organ Donation 81 Judaism and Organ Donation In Judaism there is strong tradition of caring for the sick. Pikuach nefesh (saving of life) takes priority. The Talmud rules that one is even permitted to infringe the laws of the Sabbath for this purpose.

82. Professional Development Programme for Organ Donation 82 Buddhism and Organ Donation Organ donation is an extremely positive action. As long as it is truly the wish of the dying person, it will not harm in any way the consciousness that is leaving the body. On the contrary, this final act of generosity accumulates good karma. Sogyal Rinpoche – The Tibetan Book of Living and Dying

83. Professional Development Programme for Organ Donation 83 Hindu Dharma and Organ Donation As a person puts on new garments giving up the old ones the soul similarly accepts new material bodies giving up the old and useless ones. Bhagavad Gita, Chapter 2:22

84. Professional Development Programme for Organ Donation 84 Sikhism and Organ Donation The dead sustain their bond with the living through virtuous deeds. Guru Nanak, Guru Granth Sahib The Sikh religion teaches that life continues after death in the soul, not the physical body. The last act of giving and helping others through organ donation is both consistent with, and in the spirit of, Sikh teaching. Dr Indarjit Singh OBE, Director of Network Sikh Organisations UK, endorsed by Sikh Authorities in Amritsar, Punjab

85. Professional Development Programme for Organ Donation 85 Some issues to consider Donor identification - Rates of referral to ITU Approaching the family – Role of extended family Definition of death – Brain-stem death Religious and cultural values Complexities of grief – Western and Eastern Bereavement models Death rituals – Burial/cremation

86. Professional Development Programme for Organ Donation 86 Further Reading Randhawa G, Brocklehurst A, Pateman R, Kinsella S, Parry V (2010) Are religious communities useful in promoting the organ donation debate: Lessons from the United Kingdom. Organs, Tissues and Cells – Journal of the European Transplant Co-ordinators Association, 13, 49-54. Randhawa G, Brocklehurst A, Pateman R, Kinsella S, Parry V (2010) Opting-in or Opting-out? The views of the UKs Faith leaders in relation to organ donation. Journal of Health Policy. 96, 36-44. Randhawa G, Brocklehurst A, Pateman R, Kinsella S, Parry V (2010) Faith leaders united in their support for organ donation – Findings from the Organ Donation Taskforces Study of attitudes of UK faith and belief group leaders to an opt-out system. Transplant International. 23, 140-146. Davis C. & Randhawa G. (2004) Dont know enough about it! - Awareness and attitudes towards organ donation and transplantation among the black Caribbean and black African population in Lambeth, Southwark, and Lewisham, UK. Transplantation. 78, 420-425. Randhawa G. (1998) An exploratory study examining the influence of religion on attitudes towards organ donation among the Asian population in Luton, UK. Nephrology Dialysis Transplantation. 13, 1949-54. Randhawa G. (1998) Coping with grieving relatives and making a request for organs: Principles for staff training. Medical Teacher. 20, 247-249 Randhawa G. (1997) Enhancing the health professional's role in requesting transplant organs. British Journal of Nursing. 6, 429-434.