Organ Donation Past, Present and Future Donor Family Experience Dawn McKeen & Jacki Newby NORTHERN.
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Transcript of Organ Donation Past, Present and Future Donor Family Experience Dawn McKeen & Jacki Newby NORTHERN.
Organ Donation Past, Present and Future
Donor Family Experience
Dawn McKeen&
Jacki Newby NORTHERN
Organ Donation Past, Present and Future
Another family’s story…
3Organ 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.”
Another family’s story…
4Organ 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.”
Organ Donation Past, Present and Future
Family Approach and Consent
Dr Jon Walton, CLOD, Freeman Hospital
Dr Angus Vincent
5
NORTHERN
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.
6Organ Donation Past, Present and Future
NORTHERN
Organ Donation Past, Present and Future
Regional Data
7
Dr Jon WaltonFreeman Hospital
NORTHERN
Where are potential donors in the Northern team lost?
8Organ Donation Past, Present and Future
Conclusion: The effect of the Northern Model.
3rd
1st
12th
1st
NORTHERN
63%
=
Consent
+75%
+68%55%
(68) (89) (78)(56)Scotland South
WestEastern London
NORTHERN
DBD DCD
Doctor DoctorSNOD SNOD
-------- National rate
83
92
58
91
75
88
75
92
85
62
52
75
% a
pp
roac
hes
wh
ere
SN
-OD
invo
lved
0
20
40
60
80
100
Team
Easte
rn
London
Mid
lands
North
Wes
t
Norther
n
Norther
n
Irela
nd
Scotla
nd
South
Centra
lSouth
East
South
Wal
es South
Wes
t
York
shire
1 April 2012 to 31 March 2013, data as at 4 April 2013
10Organ Donation Past, Present and Future
7th
NORTHERN+Doctor SNODDBD
-------- National rate
76
85
53
80
58
80
53
74
83
69
37
65
% a
pp
roac
he
s w
her
e S
N-O
D i
nvo
lve
d
0
20
40
60
80
100
Team
Easte
rn
London
Mid
lands
North
Wes
t
Norther
n
Norther
n
Irela
nd
Scotla
nd
South
Centra
lSouth
East
South
Wal
es South
Wes
t
Yorksh
ire
1 April 2012 to 31 March 2013, data as at 4 April 2013
11Organ Donation Past, Present and Future
9th
NORTHERN+Doctor SNODDCD
63% 67%
=
Consent
+75%
+68%55%
(58)(68) (89) (78)Scotland South
WestEastern UK
(56)London
NORTHERN
DBD DCD
Doctor DoctorSNOD SNOD
Organ Donation Past, Present and Future
Best Practice in Family Approach and Consent
13
Dr Angus VincentNorthern Regional CLOD
NORTHERN
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.
14Organ Donation Past, Present and Future
PDA 2011/12
15Organ Donation Past, Present and Future
2011/12 data DBD DCD
Approached 1090 1592
Consent given 694 793
% 64% 50%
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%
Combined
55% consent
45% family refusal
16Organ Donation Past, Present and Future
Poor DCD consent rates…………
Source: Transplant activity in the UK, 2011-2012, NHS Blood and Transplant
716697
664637 634
609 611 624 637 652
61 73 87127
159200
288
335373
436397
472 485
599
702
858
961
1062 1046 1055
0
100
200
300
400
500
600
700
800
900
1000
1100
2002-2003 2003-2004 2004-2005 2005-2006 2006-2007 2007-2008 2008-2009 2009-2010 2010-2011 2011-2012
Year
Nu
mb
er
DBD donors
DCD donors
Living donors
Number of deceased and living donors in the UK, 1 April 2002 - 31 March 2012
17Organ Donation Past, Present and Future
Bottom line – UK Family Refusal Rate is 45%
One of the highest family refusal rates in the world
18Organ Donation Past, Present and Future
Family refusal rates, 2010
Note – limited international data available on family refusal rates
19Organ Donation Past, Present and Future
BBC DoNation Survey
August, 2005
20Organ Donation Past, Present and Future
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
21Organ Donation Past, Present and Future
PDA 11/12 – Top 3 Refusal Reasons
22Organ Donation Past, Present and Future
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)
23Organ Donation Past, Present and Future
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
24Organ Donation Past, Present and Future
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).
25Organ Donation Past, Present and Future
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.
26Organ Donation Past, Present and Future
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 needsTime and privacyInformation in an understandable formatCare and empathy
27Organ Donation Past, Present and Future
Evidence
• Very large body
• Qualitative, observational
• Audit
• Service Development
28Organ Donation Past, Present and Future
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
29Organ Donation Past, Present and Future
Organ Donation Past, Present and Future
Best Practice Guidance on the Family Approach
Dr Angus Vincent
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?)
31Organ Donation Past, Present and Future
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.
32Organ Donation Past, Present and Future
Involving the specialist nurse-organ donation
Training and core day to day businessTiming and transitionInformationLanguageModifiable factorsExploring ‘no’Family Support
Reluctance amongst some consultants
Professional autonomy
How to do introduce
How to run the conversation
33Organ Donation Past, Present and Future
Introducing the SN-OD
How best to do this?
34Organ Donation Past, Present and Future
Organ Donation Past, Present and Future
PlanningIntroducing the specialist nurse
Clip1 introducing SNOD.mov
Embed Clip 1
Or play from Video: Title 2, Ch 1 – 11:40 – 12:00
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.
36Organ Donation Past, Present and Future
Planning
37Organ Donation Past, Present and Future
Organ Donation Past, Present and Future
PlanningPlanning
Clip 2 Good planning.mov
Embed Clip 2
Or play from video Title 2, Ch 1 – 04:03 – 07:13
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.
39Organ Donation Past, Present and Future
Organ Donation Past, Present and Future
Breaking bad news?
Clip 3 Breaking Bad news poor.mov
Embed Clip 3
Or play from video Title 2, Ch1 – 08:20 – 10:07
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.
41Organ Donation Past, Present and Future
Organ Donation Past, Present and Future
Ensuring understanding
Clip 4 Breaking bad news good.mov
Embed Clip 4
Or play from video Title 2, Ch 1 13:20 – 15:40
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
43Organ Donation Past, Present and Future
Discussing Donation – not on ODR
• Open, exploratory questions
• Empower the family – it is their decision (legally)
• De-emphasise 1st person aspect
44Organ Donation Past, Present and Future
Organ Donation Past, Present and Future
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
Seeking consent – on ODR
• Consent has been given by the patient.
• A presumptive, facilitating tone.
Organ Donation Past, Present and Future 46
Organ Donation Past, Present and Future
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
Key Principles
Plan
Utilise the SN-OD.
Take time to ensure full understanding of the clinical reality.
Give information positively
48Organ Donation Past, Present and Future
Approaching Families – The Movie
49Organ Donation Past, Present and Future
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.
50Organ Donation Past, Present and Future