1. Donor Family Experience
9th July 2013
Mr Mat Vanes
&
Jacquie Spencer
SOUTH WEST 1

2. 10 mins interview, focus is on the approach2

3. Another family’s story…
“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.”
A contrasting family story. The mother took two years before she felt able to this to one of the teams.
Organ Donation Past, Present and Future 3 3

4. Another family’s story…
“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.”
Organ Donation Past, Present and Future 4 4

5. Family Approach and Consent
Dr Alasdair Dow
Dr Angus Vincent
CLOD to start from here
SOUTH WEST 5 5

6. SOUTH WEST
Session Objectives
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.
Outline objectives of the session
Organ Donation Past, Present and Future 6 6

7. Dr Alasdair Dow Royal Devon & Exeter Hospital
Regional Data
Dr Alasdair Dow
Royal Devon & Exeter Hospital
SOUTH WEST 7 7

8. Where are potential donors in the South West team lost?
2nd
6th
Conclusion:
Leading the way in offering all families the opportunity to donate.
1st
2nd
This slide has been seen earlier in the day.
Click 1 = circles family approach
Click 2 = DBD approach fall off
Click 3 = DBD approach rank
Click 4 = DCD approach fall off
Click 5 – DCD approach rank
Click 6 = circles ranks
Click = starts same again with Consent
Click 13 = a possible conclusion or question
Organ Donation Past, Present and Future 8 8

9. + + = 64% (58) Consent 58% 79% 53% 78% (68) (89) (56) (78) Doctor SNOD
SOUTH WEST
Consent
DBD
DCD
58%
79%
53%
78%
64% + + =
Doctor
SNOD
Doctor
SNOD
Overall consent compared to UK – good but could it be better…
(58)
(68)
(89)
(56)
(78)
Eastern
Scotland
London
South West UK 9

10. + Doctor SNOD DBD % approaches where SN-OD involved
SOUTH WEST
SNOD
DBD
Doctor
National rate 83 92 58 91 75 88 85 62 52
% approaches where SN-OD involved 20 40 60 80
100
Team
Eastern
London
Midlands
North
West
Northern
Ireland
Scotland
South
Central
East
Wales
Yorkshire
Frequency we use the SNOD for DBD approaches – why so little in South West, yet consent is higher when a SNOD is used
1 April 2012 to 31 March 2013, data as at 4 April 2013
Organ Donation Past, Present and Future 10 10

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

12. Best Practice in Family Approach and Consent
Dr Angus Vincent
Northern Regional CLOD
Introduce Gus
SOUTH WEST 12 12

13. 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

14. PDA 2011/12 Organ Donation Past, Present and Future
Emphasise real numbers of lost donors in 11/12 – and this just for DBD
Organ Donation Past, Present and Future

15. 2011/12 data DBD DCD DBD DCD DBD DCD Approached 1090 1592
Consent given
694
793 %
64%
50%
Combined
55% consent
45% family refusal
DBD
DCD
Consent if on ODR
93%
79%
Consent if not on ODR
48%
37%
DBD
DCD
Consent - SNOD involved
68%
64%
Consent - SNOD not involved
53%
30%
Huge refusal rate overall.
Effect of ODR.
Effect of SNOD – particularly for a DCD.
Organ Donation Past, Present and Future

16. Poor DCD consent rates…………
The DCD pathway is now more often commenced than DBD – the poor consent rates here are thus of particular concern.
Organ Donation Past, Present and Future

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

18. Family refusal rates, 2010
Note – limited international data available on family refusal rates
Organ Donation Past, Present and Future 18

19. BBC DoNation Survey August, 2005
Thus, there is a UK acceptance and approval for donation of around 90% but an actual consent rate of 60%. This must be of interest.
August, 2005
Organ Donation Past, Present and Future

20. 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
Given ‘simplistic’ reasons v more complex grief responses.
Organ Donation Past, Present and Future

21. PDA 11/12 – Top 3 Refusal Reasons
Note highest two – consequence of our emphasis on 1st person consent?
Organ Donation Past, Present and Future

22. 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

23. 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

24. 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 ( x more likely to not be on ODR).
Organ Donation Past, Present and Future

25. 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

26. Clear guidance on the conduct and content of the consent process
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

27. Evidence Very large body Qualitative, observational Audit
Service Development
Happy to talk thro’ ACRE at this point if anyone wishes – should offer this to the room.
Organ Donation Past, Present and Future

28. 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
NICE guideline has the basis of the new NHSBT strategy document but not UK wide, consent message alongside many other topics, guideline fatigue, how well read and promoted? Therefore a dedicated guide and resource dealing with the family approach….
Organ Donation Past, Present and Future

29. Best Practice Guidance on the Family Approach
Dr Angus Vincent 29

30. 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

31. 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.
In brackets – and willingly.
Even if its implementation should not lead to increased donation rates, we believe it sets out and outstanding model for family care and communication.
Organ Donation Past, Present and Future

32. 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
Fundamental to this guidance is the role of the SNOD.
Organ Donation Past, Present and Future

33. Introducing the SN-OD How best to do this?
Jumping the gun somewhat but addressing this commonlly raised objection now is useful. Could put this section in later in sequence.
Opportunity to explore this common difficulty/objection.
Find those in the room uncomfortable with utilising the SNOD.
Find strategies from the room.
Offer suggestions.
Organ Donation Past, Present and Future

34. 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

35. 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.
Very general overview before drilling down.
Organ Donation Past, Present and Future

36. Planning
Organ Donation Past, Present and Future

37. 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

38. 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

39. 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

40. 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

41. 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

42. 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

43. Discussing Donation – not on ODR
Open, exploratory questions
Empower the family – it is their decision (legally)
De-emphasise 1st person aspect
Why might “What do you think John would have wanted” be less successful.
Organ Donation Past, Present and Future

44. 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

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

46. Registered on ODR 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

47. Take time to ensure full understanding of the clinical reality.
Key Principles
Plan
Utilise the SN-OD.
Take time to ensure full understanding of the clinical reality.
Give information positively
Illustrative as a single side summary
Organ Donation Past, Present and Future

48. Approaching Families – The Movie
Promoting this resource
Organ Donation Past, Present and Future

49. Summary
Our huge family refusal rate is the main reason patients don’t get the transplant they need.
Evidence would strongly suggest that many refusals are as a result of us failing to get key aspects of the approach right.
A simple 3 stage strategy can ensure our families are cared for and informed. We believe many more will say “Yes” to donation as a result.
Organ Donation Past, Present and Future