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

2. 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

3. 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

4. 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

5. Family refusal rates
Organ Donation Past, Present and Future 5

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

7. 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

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

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

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

11. 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

12. 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

13. 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

14. NICE Guidance
A multidisciplinary team (MDT) should be responsible for planning the approach and discussing organ donation with those close to the patient.
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

15. NICE Guidance
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.
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

16. 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

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

18. 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

19. 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

20. 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

21. 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

22. 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

23. Planning Planning Clip 2
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

24. 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

25. Introducing the specialist nurse
Planning
Clip 1 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

26. 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

27. 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

28. Breaking bad news?
Clip 3
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

29. Ensuring understanding
Clip 4
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

30. 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

31. 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

32. 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

33. Raising donation – not on ODR
Clip 5
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

34. 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

35. 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

36. 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

37. 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

38. 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
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39. Registered on ODR
Clip 6
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

40. 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

41. 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

42. 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