Transcript Donor Family Experience

Donor Family Experience
Pauline Holmes
&
Trish Collins
Organ Donation Past, Present and Future
SOUTH
CENTRAL
Can insert pictures or name of donor family being
interviewed here – or delete slide
Organ Donation Past, Present and Future
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.”
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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.”
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Family Approach and
Consent
Dr Mark Haslam
Dr Angus Vincent
11th June 2013
Organ Donation Past, Present and Future
SOUTH
CENTRAL
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Session Objectives
SOUTH
CENTRAL
• 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.
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Regional Data
SOUTH
CENTRAL
Dr Mark Haslam
Deputy Clinical Lead Organ Donation
Cheltenham Hospital
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Where are potential donors in the
South Central team lost?
SOUTH
CENTRAL
100
90
% of possible donors
80
7th
24%
5%
70
3%
1st
7%
60
50
40
45%
22%
Conclusion: Can we equal our
DBD results in DCD?
45%
30
9th
20
10
0
Possible
donors*
5%
5th
49%
57%
DBD, 59 donated (48% of possible donors)
DCD, 32 donated (7% of possible donors, 12% of those not contraindicated)
Neurological
death tests
performed
(DBD only)
Neurological
death
confirmed
(DBD only)
Contraindications
Family
approach
Consent/
authorisation
Donation
*
* DBD - Possible donors meeting criteria for neurological testing
* DCD - Possible donors not confirmed dead by neurological criteria where imminent death anticipated and treatment withdrawn
*
* The annotated figures represent the percentage of remaining patients lost at each stage, not the percentage of all possible donors
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SOUTH
CENTRAL
Consent
DBD
33%
DCD
82%
+
21%
61%
+
SNOD
=
SNOD
Doctor
(68)
(89)
(56)
(78)
Eastern
Scotland
London
South West
Doctor
60%
(58)
UK
DBD
Doctor
100
92
% approaches where SN-OD involved
80
+
SOUTH
CENTRAL
SNOD Tied
1st
92
91
88
85
83
75
75
75
60
62
58
52
40
20
0
1 April 2012 to 31 March 2013, data as at 4 April 2013
Organ Donation Past, Present and Future
Team
-------- National rate
10
DCD
Doctor
% approaches where SN-OD involved
100
+
SNOD
6th
85
80
SOUTH
CENTRAL
80
76
80
83
74
69
65
60
58
53
53
40
37
20
0
Team
-------- National rate
1 April 2012 to 31 March 2013, data as at 4 April 2013
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SOUTH
CENTRAL
Best Practice in
Family Approach and Consent
Dr Angus Vincent
Northern Regional CLOD
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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.
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PDA 2011/12
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2011/12 data
DBD
DCD
Combined
Approached
1090
1592
55% consent
Consent given
694
793
%
64%
50%
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%
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Poor DCD consent rates…………
Number of deceased and living donors in the UK, 1 April 2002 - 31 March 2012
1100
1062
DBD donors
DCD donors
Living donors
1000
1055
1046
961
900
858
800
716
Number
702
697
700
664
637
634
599
600
611
624
637
652
485
472
500
609
436
397
400
373
335
288
300
200
200
159
127
100
61
73
87
2002-2003
2003-2004
2004-2005
0
2005-2006
2006-2007 2007-2008
Year
2008-2009
2009-2010
2010-2011
2011-2012
Source: Transplant activity in the UK, 2011-2012, NHS Blood and Transplant
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Bottom line – UK Family Refusal Rate is 45%
One of the highest family refusal rates in the world
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Family refusal rates, 2010
45
43
40
35
31.5
refusal rate (%)
29.9
30
25
19.3
20
19.2
19
15
8.7
10
7.1
5.8
5
4.7
0
UK
Italy
Romania
Rep Ireland
Croatia
Spain
Poland
Country
Slovakia
Hungary
Czech
Republic
Note – limited international data available on family refusal rates
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BBC DoNation Survey
August, 2005
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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
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PDA 11/12 – Top 3 Refusal Reasons
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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)
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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 
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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).
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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.
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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
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Evidence
•Very large body
•Qualitative, observational
•Audit
•Service Development
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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
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Best Practice Guidance on the
Family Approach
Dr Angus Vincent
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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?)
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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.
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Involving the specialist nurse-organ
donation
Training and core day to day business
Timing and transition
Information
Language
Modifiable factors
Exploring ‘no’
Family Support
Organ Donation Past, Present and Future
Reluctance amongst some consultants
Professional autonomy
How to do introduce
How to run the conversation
32
Introducing the SN-OD
How best to do this?
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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
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.
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Planning
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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
Confirming understanding and acceptance
Donation should not be discussed until the family has
accepted the reality of the clinical situation
DBD
DCD
Very strong evidence that failure
to comprehend brain death is
associated with a ‘no’.
Conversation regarding
withdrawal of life sustaining
treatments.
Take time.
A process but with an end point.
Emphasise death (not its
inevitability).
More familiar territory.
Scans and diagrams.
Organ Donation Past, Present and Future
Help understanding that death is
inevitable.
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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
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.
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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
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
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Discussing Donation – not on ODR
• Open, exploratory questions
• Empower the family – it is their decision (legally)
• De-emphasise 1st person aspect
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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
Seeking consent – on ODR
• Consent has been given by the patient.
• A presumptive, facilitating tone.
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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
Key Principles
Plan
Utilise the SN-OD.
Take time to ensure full
understanding of the clinical
reality.
Give information positively
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Approaching Families – The Movie
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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.
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