Approaching the families of potential organ donors Dr Paul Murphy National Clinical Lead for Organ Donation Organ Donation Past, Present and Future 1 1

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 2

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

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 4 4

Family refusal rates Organ Donation Past, Present and Future 5

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

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

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

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

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

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

Consent rate when SNOD not involved Consent / authorisation DBD donation Consent rate when SNOD involved Consent rate when SNOD not involved Organ Donation Past, Present and Future 12

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

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

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

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 16

Involvement of SNOD in approach to families Organ Donation Past, Present and Future 17

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

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

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

Planning the family approach 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

Planning the family approach 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

Planning Planning Clip 2 https://www.dropbox.com/s/30zyor97ybs66o9/Clip%202%20Good%20Planning.mp4 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

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

Introducing the specialist nurse Planning Clip 1 mp4 https://www.dropbox.com/s/b9e7wxxz6mfp9lb/Clip%201%20Breaking%20bad%20news%20good%20mp4.mp4 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

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

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

Breaking bad news? Clip 3 https://www.dropbox.com/s/d2wsmloalj9qk20/Clip%203%20Breaking%20Bad%20news%20poor.mp4 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

Ensuring understanding Clip 4 https://www.dropbox.com/s/x8ydfytmkqz10v7/Clip%204%20Breaking%20bad%20news%20good.mp4 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

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

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

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

Raising donation – not on ODR Clip 5 https://www.dropbox.com/s/khwovk8lo8p9l2l/Clip%205%20Transition%20to%20SNOD%20not%20on%20ODR.mp4 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

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

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

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

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

Consent and the Organ Donor Register Consent rate (%) DBD on ODR 92 DBD not on ODR 56 All DBD 65 DCD on ODR 76 DCD not on ODR 44 All DCD 51 DBD and DCD on ODR 84 DBD and DCD not on ODR 49 All deceased donors 57 We have rather more robust data on consent Overall, across the UK it is 65% for DBD and 51% for DCD Some distance from 85% of the population wishing to donate Organ Donation Past, Present and Future 38

Registered on ODR Clip 6 https://www.dropbox.com/s/7t18071kocpbh9a/Clip%206%20Transition%20to%20SNOD%20on%20ODR.mp4 Clip 6 Transition to SNOD on ODR.mov Embed Clip 6 Or play from video Title 8 Ch 1 05:50 – 07:21 Organ Donation Past, Present and Future

Prior first person consent “Mrs Smith, you may not be aware of this but your husband is on the National Organ Donor Register. When he registered with his new GP six years ago he also decided that he wanted be an organ donor after his death.” Planning Confirming understanding and acceptance of loss Discussing donation If a patient is on the Organ Donor Register, then consent has already been given. Organ Donation Past, Present and Future

Prior first person consent Planning “What this means is that John has given his consent for donation to take place, and what we would like to do now is explain how we can respect his decision.” Confirming understanding and acceptance of loss Discussing donation There is no provision in law for families to overturn the wishes of the patient. Organ Donation Past, Present and Future

Summary Identify and refer as soon as possible Explicitly consider the three stages of the family approach Do not raise donation until a family have understood and accepted their loss Present donation in a positive way Act upon prior first person consent Avoid exclusive focus on the wishes of the individual Organ Donation Past, Present and Future