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Stephen Cole SICSAG September 2009
“making donation usual, not unusual”
738 777 773 745 777 770 751 764 793 809
2360 2428 2311 22472388 2396
2241 21952385 2381
7234
6698
6142
5604553253545345
5654 5673
7655
0
1000
2000
3000
4000
5000
6000
7000
8000
1998-1999 1999-2000 2000-2001 2001-2002 2002-2003 2003-2004 2004-2005 2005-2006 2006-2007 2007-2008
Year
Nu
mb
er
Donors
Transplants
Transplant list
Deceased donors, transplants and active transplant list : UK
Increasing numbers waiting for transplant
0 5 10 15 20 25 30 35
Israel
New Zealand
Poland
Australia
Switzerland
Denmark
UK
Sweden
Canada
Germany
Netherlands
Finland
Norway
Italy
Ireland
Austria
Portugal
France
US
Belgium
Spain
Number of deceased donors per million population, 2007
Presumed consentInformed consent
What this means is one extra donor per year from each donating unit in Scotland
Recommendation 3
Urgent attention is required to resolve outstanding legal, ethical and professional issues in order to ensure that all clinicians are supported and able to work within a clear and unambiguous framework of good practice. Additionally, an independent UK-wide Donation Ethics Group should be established.
Organs for TransplantsEthical, legal and professional issues
Role of NHSDonation as part of EOL care
Recommendation 4a
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 part of all end-of-life care when appropriate.
Recommendation 4b
Each Trust should have an identified clinical donation champion and a Trust donation committee to help achieve this.
Role of NHSClinical leads/ Donation Champions
Role of NHSMinimum referral criteria ??
Recommendation 5
Minimum notification criteria for potential organ donors should be introduced on a UK-wide basis.
early referral is
vital
• The DTC should be notified as soon as the decision to perform brainstem death tests has been made.
• The DTC should be notified as soon as the decision to withdraw active treatment has been made.
Donation CommitteeLocal governance
Recommendation 6
Donation rates in all Trusts should be monitored. Rates of potential donor identification, referral, approach to the family and consent for donation should be reported. The Trust Donation Committee should report to the Trust Board…….and the reports should be part of the assessment of Trusts through the relevant healthcare regulator.
“making donation usual, not unusual”
Reasons for not testing (approx 650 / year)
30.4
28.1
14.6
11
8.4
6.1
0.7
0.7
0 10 20 30 40
cardiovascular instability
unknow n
residual neurological function
family-related
problems w ith testing
contra-indication to donation (including age)
coroner
others
% total
Potential Donor AuditPossibly BSD, not tested 2007-8
Reasons for not testing (approx 350 / year)
Carried out in every ICU in UK on monthly basis.
Uses WW data Clinical Engagement with this process is
vital NHS BT performance management
organisation
Patients with catastrophic brain injury who never get to ICU,
Failure to test, Poor consent rates failure to optimise donor physiology, and donation after cardiac death.
Role of NHSBrainstem death testing
Recommendation 7
BSD testing should be carried out in all patients where BSD is a likely diagnosis, even if organ donation is an unlikely outcome.
0
100
200
300
400
500
600
700
800
900
1994
- 19
95
1995
- 19
96
1996
- 19
97
1997
- 19
98
1998
- 19
99
1999
- 20
00
2000
- 20
01
2001
- 20
02
2002
- 20
03
2003
- 20
04
2004
- 20
05
2005
- 20
06
2006
- 20
07
2007
- 20
08
Heartbeating donors in UK
69
1
58
0
62
0
58
0
46
0
59
2
45
3
44
6
41
14
51
21
0
10
20
30
40
50
60
70
80
1999-2000
2000-2001
2001-2002
2002-2003
2003-2004
2004-2005
2005-2006
2006-2007
2007-2008
2008-2009
HB donors NHB donors
70
5862
58
46
61
48 5055
72
0
10
20
30
40
50
60
70
80
1999-2000
2000-2001
2001-2002
2002-2003
2003-2004
2004-2005
2005-2006
2006-2007
2007-2008
2008-2009
HB donors
NHB donors
Total Donors
91%is the consent rate when patient is known to be on ODR
Number on Organ Donor Register
0
2
4
6
8
10
12
14
16
18
1994
1996
1998
2000
2002
2004
2006
2008
mil
lio
n
Consent rates by Region
< 30%
30 – 39%
40 – 49%
50 – 59%
60 – 69%
70 – 79%
> 80%
Donation after Cardiac Death
Slow planned development across Scotland National protocol Adults with Incapacity v’s Human Tissue Act Organ Donor Register
OUTSTANDING ETHICAL & LEGAL CONCERNS
Resolution of ethical and legal issues (R3) Performance management (R6) Training (R11) Recognition of donors (R12) Guidelines for Procurator Fiscal Service (R14)
0
50
100
150
200
250
1994
- 19
95
1995
- 19
96
1996
- 19
97
1997
- 19
98
1998
- 19
99
1999
- 20
00
2000
- 20
01
2001
- 20
02
2002
- 20
03
2003
- 20
04
2004
- 20
05
2005
- 20
06
2006
- 20
07
2007
- 20
08
731 715739 737 717
644
726
630 633608 621
0
100
200
300
400
500
600
700
800
900
1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008
Year
Nu
mb
er
Heartbeating donors in the UK
donation after cardiac death
transfer from A&E donor stabilisation early referral to DTC early consultation of ODR
Ethical issues Planning for independent Ethics group
completed Home established High profile chair First meeting in May 2009
Legal issues QC opinion received Being translated into policy statement
Clinical LeadWhat it is……….
• Development of clinical collaborative– action plan
• Guideline development– diagnosis of death– donor identification & referral– donor management– family approach
• Local training programs
Clinical LeadWhat it is……….
• Potential Donor Audit– Improved data collection– Extension to A&E– Local ownership
• Review of the big issues– A&E– NHBD– consent
1. Raise public and professional awareness 2. Increase numbers on ODR 3. Uniform practice within units and
between units 4. Resolve outstanding ethical & legal
concerns 5. Engagement with DTC to ensure PDA
data is accurate.
Recommended