Transcript Organ Donation in the UK NW Roadshow 21.05.13

Organ Donation in the UK
Five years on from the Organ Donation
Taskforce
Dr Paul Murphy
National Clinical Lead for Organ Donation
Organ Donation Past, Present and Future
1
Objectives
•
Organ donation in 2006
•
Understand the impact of the Organ
Donation Taskforce report
– Donation after circulatory death
•
Learn about the landscape of
deceased donation in the UK
•
Accept the challenge of future
interventions
– Donor identification and referral
The Black Mountains, South Wales
– Donor optimisation
– Family refusal
Organ Donation, Past Present and Future
Objectives
•
Organ donation in 2006
•
Understand the impact of the Organ
Donation Taskforce report
– Donation after circulatory death
•
Learn about the landscape of
deceased donation in the UK
•
Accept the challenge of future
interventions
– Donor identification and referral
– Diagnosis of brain-stem death
– Donor optimisation
– Family refusal
Organ Donation, Past Present and Future
Deceased donors and transplant
waiting lists, 2006
8000
Deceased donors
7000
6000
7102
Deceased donor transplants
6543
Active transplant list
5396
5487
5518
5837
5665
6024
Number
5000
4000
3000
2386
2334
2339
2333
2454
2222
2316
2195
2000
1000
745
777
778
770
709
814
753
779
0
1999
2000
2001
2002
2003
Year
Organ Donation, Past Present and Future
2004
2005
2006
Deceased donation, 2006
• 1994: Organ Donor Register
8000
Deceased donors
6000
7102
Deceased donor transplants
7000
5396
5487
5518
– Opt-in legislation
6543
Active transplant list
5837
5665
6024
• 2001: Non heartbeating organ
donation programmes
Number
5000
4000
3000
2386
2334
2339
2333
2454
2222
2316
2195
2000
1000
745
777
778
770
709
814
753
779
– Controlled
– Uncontrolled
0
1999
2000
2001
2002
2003
2004
2005
Year
A series of ineffective
interventions
Organ Donation, Past Present and Future
2006
• 2003
– Potential Donor Audit
– Donor liaison clinicians and in
house coordinators
Deceased donation, 2006
• Diagnosis of brain-stem death
45
40
• Identification and referral of
family refusal rate
35
30
potential donors
25
20
• Donation after circulatory
15
10
death
5
0
UK
Italy
Romania
Rep
Ireland
Croatia
Spain
Poland
Slovakia
Hungary
Czech
Republic
The UK: an unenviable leader in
family refusals
Organ Donation, Past Present and Future
• Family consent / authorisation
rates
Counting the cost…………..
• 1000 deaths annually on active transplant
waiting list
• Restricted access to many waiting lists
• Only 25% of dialysis patients considered for
transplantation
• Active promotion of living donation
programmes
– More living donors than deceased donors
• 50% mortality on lung transplant waiting
lists
Organ Donation, Past Present and Future
Mary Hand, cystic fibrosis
sufferer. Died aged 22
Deceased donation, 2006
Spain
USA
France
Italy
Finland
Portugal
Latvia
Hungary
Norway
Germany
Sweden
Poland
UK
Croatia
How could the rates of organ
donation be so much higher in so
many other countries……….?
The Netherlands
Slovak Republic
Denmark
Switzerland
Greece
0
5
10
15
20
25
30
35
donors pm p
Organ Donation, Past Present and Future
The UK Organ Donation Taskforce
Terms of Reference
To identify barriers to donation and
transplantation and recommend
solutions within existing operational and
legal frameworks in England.
To identify barriers to any part of the
transplant process and recommend
ways to overcome them to support and
improve transplant rates
http://www.odt.nhs.uk/donation/deceased-donation/organ-donation-taskforce/
Organ Donation, Past Present and Future
Is there a Solution?
What are the barriers in hospitals?
Spain
USA
France
Italy
Finland
Portugal
Latvia
•
Uncommon
•
Poorly understood
•
Disruptive
– ICU / Emergency Medicine
Hungary
Norway
– operating theatres
Germany
•
Sweden
Poland
Not ‘core business’
– no local benefit
UK
•
Croatia
The Netherlands
Uncertain ethical and legal boundaries
– extending the potential donor pool
Slovak Republic
Denmark
Switzerland
Greece
0
5
10
15
20
25
30
35
donors pm p
Organ Donation, Past Present and Future
Why are the rates of deceased donation
in the UK so low?
Professional barriers to donation
Making a donation happen?
• Admission to critical care for donation
• Continued ventilation in a patient
close to brain-stem death
• Stabilisation for neurological
determination of death
• Approaching all families
Wrong place of death
Wrong kind of death
Unknown wishes
• Early involvement of trained
requestors
• Donation after circulatory death
Organ Donation, Past Present and Future
The Taskforce Report
• 14 recommendations
– Donor identification and referral
– Coordination
– Retrieval
• Accepted in full by all four health
departments
• 50% increase in deceased donation
by 2013
• Comprehensive UK-wide framework
for donation and retrieval
The report of the UK Organ Donation
Taskforce, 2008
http://www.odt.nhs.uk/donation/deceased-donation/organ-donation-taskforce/
Organ Donation, Past Present and Future
Local Donation Champions
Recommendation 4
All parts of the NHS must embrace organ
donation as a usual, not an unusual event.
Local policies, constructed around national
guidelines, should be put in place.
Discussions about donation should be part of
all end-of-life care when appropriate. Each
Trust should have an identified clinical
donation champion and a Trust donation
committee to help achieve this.
Organ Donation, Past Present and Future
Donation should not be viewed
as something to be inflicted
upon patients and families after
end of life care.
Rather, it should be considered
to be a fundamental component
of end of life care and not
denied to patients because they
are dying in the wrong place or
in the wrong way
The UK framework for donation
NHS Blood and Transplant
National ODO
Employment of coordinators
Commissioning of retrieval
Audit
Public engagement
Education and training
Clinical leads
Embedded coordinators
Donation Committees
Funding
Resolution of ethical and
legal obstacles
Regulation
Public recognition
Acute hospitals
Departments of Health
Organ Donation, Past Present and Future
More patients
having their
wishes to
donate
recognised,
fulfilled and
maximised
Professional Development
Recommendation 11
All clinical staff likely to be involved in
the treatment of potential organ donors
should receive mandatory training in
the principles of donation.
There should also be regular update
training
Rafael Matesanz
Director
National Donation and
Transplant Organisation
Spain
“The burden of responsibility to raise the question of donation …falls on
medical professionals, few of whom ever receive any specific training for this
difficult and delicate task. This is, by far, the target group on which the efforts
to improve organ donation must be concentrated.”
Organ Donation, Past Present and Future
Framework of Practice
Recommendation 3
Urgent attention is required to resolve
outstanding legal, ethical and professional
issues in order to ensure that all clinicians
are supported and are able to work within a
clear and unambiguous framework of good
practice. Additionally, an independent UKwide Donation Ethics Group should be
established.
Organ Donation, Past Present and Future
Wrong place of death
Wrong kind of death
Unknown wishes
Implementation of the UK framework
A managed programme of change
INVOLVE
Engage, develop and empower
local donation committees
INFORM
INSPIRE
Make donation
usual in all
hospitals
Develop and publish the ODTF
recommendations
1
2
3
4
5
6
7
8
Create
short term
wins
Don’t let up
Make it stick
(Regional
Donation
Collaboratives)
(Business
relationship
with NHS
BT)
Increase
urgency
Build the
guiding team
Get the right
vision
Communicate
for buy-in
Empower
action
(professional
and patient
pressure)
(Organ
Donation
Taskforce)
(Taskforce
Report)
(Regional
Roadshows)
(Professional
Development
Programme)
Organ Donation, Past Present and Future
(DCD)
Phase 1: inform
Organ Donation
Roadshows
Organ Donation, Past Present and Future
Phase 1: inform
Spain
USA
France
Italy
Finland
Portugal
Latvia
Hungary
Norway
Germany
Sweden
Poland
UK
Croatia
The Netherlands
Slovak Republic
Denmark
Switzerland
Greece
0
5
10
15
20
25
30
35
donors pm p
Organ Donation, Past Present and Future
An undeniable case for
change
Phase 2: involve
Sharing the vision
Organ Donation, Past Present and Future
The six big wins
• Consent / authorisation
• Brain-stem death testing
• Donation after circulatory
death
• Donation from Emergency
Medicine
• Donor identification and
referral
• Donor optimisation
consent /
authorisation
diagnosis of
brain stem
death
NHBD
Donation in
emergency
medicine
Minimum
notification
criteria
Donor
Management
Leadership
Change management
Communication skills
Organ Donation, Past Present and Future
Overcoming the obstacles
Donation after Circulatory Death
http://www.odt.nhs.uk/donation/deceased-donation/
Organ Donation, Past Present and Future
Overcoming the obstacles
Donor identification and family approach
http://www.odt.nhs.uk/donation
/deceased-donation/
Organ Donation, Past Present and Future
Building on existing guidance
UK General Medical Council guidance on end of
life care , 2010
13. If an adult patient lacks capacity to
decide, the decisions you or others make
on the patient’s behalf must be based on
whether treatment would be of overall
benefit to the patient ….. and which
option (including the option not to treat)
would be least restrictive of the patient’s
future choices. ………you must consult
with those close to the patient who lacks
capacity, to help you reach a view.
Organ Donation, Past Present and Future
Building on existing guidance
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
Phase 2: involve
600
507
500
number DCD donors
437
373
400
335
288
300
200
200
159
127
100
37
42
61
73
87
0
2000- 2001- 2002- 2003- 2004- 2005- 2006- 2007- 2008- 2009- 2010- 2011- 20122001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013
year
A ten fold increase in
MC III DCD over a
decade
Organ Donation, Past Present and Future
Create early gains
Deceased organ donors in the UK 2007-12
1400
DBD
1212
DCD
1200
1000
507
Number
809
800
200
436
288
335
373
600
400
609
611
624
637
652
2007-8
2008-9
2009-10
2010-11
2012-13
705
200
0
Organ Donation, Past Present and Future
2012-13
Deceased organ donors in the UK 2007-12
1400
DBD
1212
DCD
1200
49.7%
1000
507
Number
809
800
200
436
288
335
373
600
400
609
611
624
637
652
2007-8
2008-9
2009-10
2010-11
2012-13
705
200
0
Organ Donation, Past Present and Future
2012-13
Deceased donation and kidney
transplantation, 2007-12
1400
2200
DCD
2001
2000
1000
1800
donors
1796
1698
800
1615
1600
1562
600
1412
1400
400
1200
200
0
1000
2007-2008
2008-2009
2009-2010
2010-2011
year
Organ Donation, Past Present and Future
2011-2012
2012-2013
DD kidney transplants
DBD
kidney transplants
1200
Deceased donors, transplants and the
transplant waiting list 2007-12
8000
7655
7000
7877
7997
7800
7636
7288
7219
6698
6000
6142
5673
Donors
Transplants
Transplant list
Number
5000
4000
3000
2396
2241
2196
2385
2381
2552
2645
2695
2912
3112
2000
1000
770
751
764
793
809
899
959
1010
1088
1212
0
2003-04 2004-05 2005-06 2006-07 2007-08 2008-09 2009-10 2010-11 2011-12 2012-13
Organ Donation, Past Present and Future
Deceased donation and heart
transplantation in the UK 2007-12
200
1200
DCD
DBD
180
heart transplants
160
donors
1000
140
120
800
100
600
80
60
400
40
200
20
0
0
2007-2008
2008-2009
2009-2010
2010-2011
year
Organ Donation, Past Present and Future
2011-2012
2012-2013
heart transplants
1400
Deceased donation, 2012
Spain
Croatia
Portugal
USA
France
Italy
Norway
UK
Finland
19.4
Slovakia
Hungary
Germany
Latvia
The Netherlands
Poland
Denmark
Switzerland
Sweden
Greece
0
5
10
15
20
25
30
35
donors pm p
Organ Donation, Past Present and Future
UK 2012: much improved…………. but
could do better still
Phase 3: inspire
• Donor identification and referral
• Diagnosis of brain-stem death
• Donor optimisation
• Family refusal
Doing things differently
Organ Donation, Past Present and Future
Brain-stem death testing
• 427 patients not tested
(25.7%)
• 220 additional brain-stem
dead donors
• 860 additional organ
transplants
Potential Donor Audit, 2011-12
Organ Donation, Past Present and Future
Organ utilisation in DBD donors
100
90
88
82
% possible organs
80
70
60
50
Kidney
Liver
Pancreas
40
Hearts
Lungs
30
26
21
18
20
10
0
Organ
donors
Meet specific Consent for
Organ
Organ
organ criteria organ and accepted and transplanted
organ offered
retrieved
Organ Donation, Past Present and Future
Family refusal rates
45
40
family refusal rate
35
30
25
20
15
10
5
0
UK
Italy
Romania
Rep
Ireland
Croatia
Spain
Poland
Slovakia
Hungary
Czech
Republic
The UK will never have a world class donation and transplantation
service when 40% of families say ‘no’.
Organ Donation, Past Present and Future
Mary Hand, cystic fibrosis
sufferer. Died aged 22
Organ Donation, Past Present and Future
These issues should not
be particularly difficult, or
even that costly to
resolve. Overcoming
them will require
leadership, boldness and
willingness to change
established practice. The
prize for doing so is
considerable.
Organs for Transplants
A Report from the Organ Donation
Taskforce (2008)