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Organ Donation in the UK Five years on from the Organ Donation Taskforce. Dr Paul Murphy National Clinical Lead for Organ Donation. 1. Organ donation in 2006 Understand the impact of the Organ Donation Taskforce report Donation after circulatory death - PowerPoint PPT Presentation
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Organ Donation Past, Present and Future
Organ Donation in the UKFive years on from the Organ Donation Taskforce
Dr Paul MurphyNational Clinical Lead for Organ Donation
1
Organ Donation, Past Present and Future
• 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
– Donor optimisation
– Family refusal
Objectives
The Black Mountains, South Wales
Organ Donation, Past Present and Future
• 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
Objectives
Organ Donation, Past Present and Future
Deceased donors and transplant waiting lists, 2006
745 777 778 770 709 814 753 779
2386 2334 2339 2333 22222454
2195 2316
5396 5487 5518 5665 5837 6024
6543
7102
0
1000
2000
3000
4000
5000
6000
7000
8000
1999 2000 2001 2002 2003 2004 2005 2006
Year
Num
ber
Deceased donors
Deceased donor transplantsActive transplant list
Organ Donation, Past Present and Future
Deceased donation, 2006
• 1994: Organ Donor Register
– Opt-in legislation
• 2001: Non heartbeating organ donation programmes
– Controlled
– Uncontrolled
• 2003
– Potential Donor Audit
– Donor liaison clinicians and in house coordinators
A series of ineffective interventions
745 777 778 770 709 814 753 779
2386 2334 2339 2333 22222454
2195 2316
5396 5487 5518 5665 5837 6024
6543
7102
0
1000
2000
3000
4000
5000
6000
7000
8000
1999 2000 2001 2002 2003 2004 2005 2006
Year
Num
ber
Deceased donorsDeceased donor transplantsActive transplant list
Organ Donation, Past Present and Future
0
5
10
15
20
25
30
35
40
45
fam
ily re
fusa
l rat
e
UK Italy Romania RepIreland
Croatia Spain Poland Slovakia Hungary CzechRepublic
Deceased donation, 2006
• Diagnosis of brain-stem death
• Identification and referral of
potential donors
• Donation after circulatory
death
• Family consent / authorisation
ratesThe UK: an unenviable leader in family refusals
Organ Donation, Past Present and Future
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 Mary Hand, cystic fibrosis
sufferer. Died aged 22
Organ Donation, Past Present and Future
Deceased donation, 2006
How could the rates of organ donation be so much higher in so many other countries……….?
0 5 10 15 20 25 30 35
donors pmp
Greece
Switzerland
DenmarkSlovak Republic
The Netherlands
CroatiaUK
Poland
Sweden
GermanyNorwayHungary
Latvia
Portugal
Finland
ItalyFrance
USA
Spain
Organ Donation, Past Present and Future
The UK Organ Donation Taskforce
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
Terms of Reference
http://www.odt.nhs.uk/donation/deceased-donation/organ-donation-taskforce/
Organ Donation, Past Present and Future
Is there a Solution?
• Uncommon• Poorly understood• Disruptive
– ICU / Emergency Medicine– operating theatres
• Not ‘core business’– no local benefit
• Uncertain ethical and legal boundaries– extending the potential donor pool
What are the barriers in hospitals?
Why are the rates of deceased donation in the UK so low?0 5 10 15 20 25 30 35
donors pmp
Greece
Switzerland
DenmarkSlovak Republic
The Netherlands
CroatiaUK
Poland
Sweden
GermanyNorwayHungary
Latvia
Portugal
Finland
ItalyFrance
USA
Spain
Organ Donation, Past Present and Future
Professional barriers to donation
• 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
• Early involvement of trained requestors
• Donation after circulatory death
Making a donation happen?
Wrong place of deathWrong kind of death
Unknown wishes
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
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.
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
Recommendation 4
Organ Donation, Past Present and Future
The UK framework for donation
National ODOEmployment of coordinatorsCommissioning of retrievalAuditPublic engagementEducation and training
FundingResolution of ethical and legal obstaclesRegulationPublic recognition
Clinical leadsEmbedded coordinatorsDonation Committees
NHS Blood and Transplant
Departments of Health
More patients having their wishes to donate recognised, fulfilled and maximised
Acute hospitals
Organ Donation, Past Present and Future
Professional Development
“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.”
Rafael MatesanzDirector
National Donation and Transplant Organisation
Spain
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
Organ Donation, Past Present and Future
Framework of Practice
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 UK-wide Donation Ethics Group should be established.
Recommendation 3
Wrong place of deathWrong kind of death
Unknown wishes
Organ Donation, Past Present and Future
Implementation of the UK frameworkA managed programme of change
2 31
Develop and publish the ODTF recommendations
INFORM
64 5
Engage, develop and empower local donation committees
INVOLVE
7 8
Make donation usual in all hospitals
INSPIRE
Increase urgency
(professional and patient pressure)
Build the guiding team
(Organ Donation
Taskforce)
Get the right vision
(Taskforce Report)
Communicate for buy-in
(Regional Roadshows)
Empower action
(Professional Development Programme)
Create short term
wins
(DCD)
Don’t let up
(Regional Donation
Collaboratives)
Make it stick
(Business relationship with NHS
BT)
Organ Donation, Past Present and Future
Phase 1: inform
Organ Donation Roadshows
Organ Donation, Past Present and Future
Phase 1: inform
An undeniable case for change0 5 10 15 20 25 30 35
donors pmp
Greece
Switzerland
Denmark
Slovak Republic
The Netherlands
CroatiaUK
Poland
Sweden
Germany
NorwayHungary
Latvia
Portugal
Finland
Italy
FranceUSA
Spain
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
deathNHBD
Donation in emergency medicine
Minimum notification
criteria
Donor Management
consent / authorisation
diagnosis of brain stem
deathNHBDconsent /
authorisation consent /
authorisation
diagnosis of brain stem
death
diagnosis of brain stem
deathNHBDNHBD
Donation in emergency medicine
Minimum notification
criteria
Donor Management
Donation in emergency medicine
Donation in emergency medicine
Minimum notification
criteria
Minimum notification
criteria
Donor Management
Donor Management
Leadership
Change management
Communication skills
Organ Donation, Past Present and Future
Overcoming the obstaclesDonation after Circulatory Death
http://www.odt.nhs.uk/donation/deceased-donation/
Organ Donation, Past Present and Future
http://www.odt.nhs.uk/donation/deceased-donation/
Overcoming the obstaclesDonor identification and family approach
Organ Donation, Past Present and Future
Building on existing guidance
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.
UK General Medical Council guidance on end of life care , 2010
Organ Donation, Past Present and Future
Building on existing guidance
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.
UK General Medical Council guidance on end of life care , 2010
Organ Donation, Past Present and Future
37 4261 73 87
127159
200
288
335373
437
507
0
100
200
300
400
500
600
2000-2001
2001-2002
2002-2003
2003-2004
2004-2005
2005-2006
2006-2007
2007-2008
2008-2009
2009-2010
2010-2011
2011-2012
2012-2013
year
num
ber D
CD
don
ors
Phase 2: involve
Create early gainsA ten fold increase in
MC III DCD over a decade
Organ Donation, Past Present and Future
Deceased organ donors in the UK 2007-12
609 611 624 637 652 705
200288
335 373436
507
0
200
400
600
800
1000
1200
1400
2007-8 2008-9 2009-10 2010-11 2012-13 2012-13
Num
ber
DBD DCD
809
1212
Organ Donation, Past Present and Future
Deceased organ donors in the UK 2007-12
609 611 624 637 652 705
200288
335 373436
507
0
200
400
600
800
1000
1200
1400
2007-8 2008-9 2009-10 2010-11 2012-13 2012-13
Num
ber
DBD DCD
809
1212
49.7%
Organ Donation, Past Present and Future
Deceased donation and kidney transplantation, 2007-12
1412
15621615
1698
1796
2001
0
200
400
600
800
1000
1200
1400
2007-2008 2008-2009 2009-2010 2010-2011 2011-2012 2012-2013
year
dono
rs
1000
1200
1400
1600
1800
2000
2200
DD
kid
ney
trans
plan
ts
DCDDBDkidney transplants
Organ Donation, Past Present and Future
770 751 764 793 809 899 959 1010 1088 1212
2396 2241 21962385 2381
2552 2645 26952912
3112
763678007997
7219
6698
6142
5673
76557877
7288
0
1000
2000
3000
4000
5000
6000
7000
8000
2003-04 2004-05 2005-06 2006-07 2007-08 2008-09 2009-10 2010-11 2011-12 2012-13
Num
ber
DonorsTransplantsTransplant list
Deceased donors, transplants and the transplant waiting list 2007-12
Organ Donation, Past Present and Future
Deceased donation and heart transplantation in the UK 2007-12
0
200
400
600
800
1000
1200
1400
2007-2008 2008-2009 2009-2010 2010-2011 2011-2012 2012-2013
year
dono
rs
0
20
40
60
80
100
120
140
160
180
200
hear
t tra
nspl
ants
DCDDBDheart transplants
Organ Donation, Past Present and Future
Deceased donation, 2012
0 5 10 15 20 25 30 35
donors pmp
GreeceSweden
Switzerland
DenmarkPoland
The NetherlandsLatvia
Germany
HungarySlovakiaFinland
UKNorway
ItalyFrance
USAPortugalCroatia
Spain
19.4
UK 2012: much improved…………. but could do better still
Organ Donation, Past Present and Future
Phase 3: inspire
Doing things differently
• Donor identification and referral
• Diagnosis of brain-stem death
• Donor optimisation
• Family refusal
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
8882
26
1821
0
10
20
30
40
50
60
70
80
90
100
Organdonors
Meet specificorgan criteria
Consent fororgan and
organ offered
Organaccepted and
retrieved
Organtransplanted
% p
ossi
ble
orga
ns
KidneyLiverPancreasHeartsLungs
Organ Donation, Past Present and Future
0
5
10
15
20
25
30
35
40
45
fam
ily re
fusa
l rat
e
UK Italy Romania RepIreland
Croatia Spain Poland Slovakia Hungary CzechRepublic
Family refusal rates
The UK will never have a world class donation and transplantation service when 40% of families say ‘no’.
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.Mary Hand, cystic fibrosis
sufferer. Died aged 22 Organs for TransplantsA Report from the Organ Donation
Taskforce (2008)