Professional Development Programme for Organ Donation1
Paul MurphyGurch RandhawaElla Poppitt
September 2010
Consent /Authorisation
“Improving organ donation within your hospital”
Professional Development Programme for Organ Donation2
The progression of your learning journey
On
line T
oo
l: Self-A
ssessment T
ool, Docum
ent Sharing, P
odcasts, Discussion
Forum
, PD
P A
tlas, Program
me P
rogress Tracker
National Kick-Off Event(inc Law & Donation after Cardiac Death Master Class)
Change Management & Leadership Fundamentals
Master Class 1 (Diagnosis of Brain Stem Death and Regional Peer Consulting
Group Launch)
Master Class 2(Donor Management & Physiology and Emergency Medicine)
Making Change Happen(Development of action plan to implement changes in Trust)
Master Class 3(Referral / consent / authorisation / Media
Paediatrics(
Regional Collaboratives
National Review Event(Review of Programme and Ethics and Media Skills Master
Class)
National Kick-Off Event(inc Law & Donation after Cardiac Death Master Class)
Change Management & Leadership Fundamentals
Regional Peer Consulting Group(Introduction and coaching in action learning sets)
Making Change Happen(Development of action plan to implement changes in Trust)
Regional Collaboratives
National Review Event(Review of Programme and Ethics and Media Skills Master
Class)
Podcasts: Eye & Tissue D
onation, Epidemiology of D
onation & Transplantation, Audit &
Statistics and PD
A: interpretation & Action
Online Tool Self Assessm
ent Tool, Docum
ent Sharing, Podcasts, Discussion Forum
, Programm
e Atlas, Program
me Progress Tracker
All Clinical Leads Chairs of Donation Committees
Professional Development Programme for Organ Donation3
Agenda
1Identification, referral and consent / authorisation: an overview
40mins
2 Approaches to consent / authorisation 40mins
Break 15 mins
3 Cultural and religious influences 45mins
Break 15 mins
6 Close 5mins
Professional Development Programme for Organ Donation4
By the end of this session, participants will gain an understanding
• of the importance of the timing of referral of a potential donor
• that increases in consent rates are achieved through improvements in family
approach, not through an increase in public awareness
• that the potentially modifiable factors that determine the outcome of the family
approach include planning of the approach and being trained to make the
request
• the potential role for SN-ODs in supporting the approach to the family for
consent /authorisation
• of the cultural and religious implications of donation after death and the need to
modify a standard family approach in recognition of such influences
• possible national initiatives around donor identification, referral and consent /
authorisation
Masterclass Objectives
Identification, referral and consent/ authorisation
An overview
Dr Paul Murphy
5
Professional Development Programme for Organ Donation
Introduction
Achieving the strategic big wins for Organ Donation requires breaking down the barriers to success to reveal the underlying issues and plan the most effective interventions
6
There are two important elements to referral
1.That it happens
2.That it occurs soon enough to maximise the opportunity for that person to be a donor
Consent / authorisation is the biggest single obstacle to donation
Considerable evidence for modifiable factors within the family approach.
Professional Development Programme for Organ Donation
Introduction
Achieving the strategic big wins for Organ Donation requires breaking down the barriers to success to reveal the underlying issues and plan the most effective interventions
7
International evidence suggests that timely identification and
referral may improve all facets of the donation pathway, and
thereby increases the possibility of an individual’s desire to
donate being identified and fulfilled.
Professional Development Programme for Organ Donation8
Pathway for a potential DBD donor
Audited Patients Was patient ever ventilated?
Was BSD a likely diagnosis?
Were BSD tests performed?
Was BSD diagnosed?
Were there any absolute contraindications?
Was subject of solid organ donation considered?
Were Next of Kin offered donation?
Was consent/authorisation obtained?
Did organ donation occur?
Referral to Co-ordinator staff
Professional Development Programme for Organ Donation
Understanding the bigger picture
9
• NICE short clinical guideline
– Donor identification and referral
– Family consent
– Consultation begins in spring 2011
• Never events consultation
– Inadvertent ABO mismatch
– Failure to refer patient on Organ Donor Register
• Quality Outcome Framework for Primary Care
– % patients registered on ODR
– www.nice.org.uk/aboutnice/gof/suggestions.jsp
Consent / authorisation for donation
10
Professional Development Programme for Organ Donation11
Family Consent / Authorisation
• UK average of 62% for DBD
and 58% for DCD
– much lower in some BMEs
• range of 53 – 88% for DBD
• considerably lower than the
apparent levels of public support
for donation
There is substantial international evidence for ‘modifiable factors’ within the family approach that are independent of legislative framework for consent / authorisation
Professional Development Programme for Organ Donation12
Family Consent / Authorisation
Whilst raising family consent rates appears to be our biggest single opportunity, it is arithmetically impossible for consent rates alone to account for all the differences between the UK and countries with the highest donation rates
Professional Development Programme for Organ Donation13
What is the relevant law in England, Wales and Northern Ireland?
“Governs the removal, storage and use of organs and tissues from deceased persons for the purposes of transplantation. No licence is required from the Human Tissue Authority for
storage where it is an organ or part of an organ or where it is stored for less than 48 hours”
Human Tissue Act, 2004
[ Reg 3, SI 2006 No. 1260]
Human Tissue Act (2004) specifically uses the term ‘consent’, even when this is given by families.
Human Tissue Act (2004) addresses the removal of organ and tissue from cadavers
Professional Development Programme for Organ Donation
For adults For children
• If a decision of a deceased person to consent to the activity, or a decision of his not to consent to it, was in force immediately before he had died, his consent
• Where such a decision is not in force, consent is required from a nominated representative or a person in a qualifying relationship (such as next of kin)
• No particular form for consent is specified
• The consent of the (competent) minor
• Where no decision was made prior to death or the minor was not competent to deal with the issue it is the consent of a person with parental responsibility
• If there is no person with parental responsibility it is the consent of a ‘qualifying relative’
Who can give consent for donation?.. Human Tissue Act (2004) places emphasis of the autonomy of the individual
Professional Development Programme for Organ Donation15
If no decision is made, how can consent be given?
Nominated Representatives: Qualifying Relatives:
• One or more persons
• Made orally in the presence of two
witnesses or in writing either:
Signed in the presence of at least one
witness
At his direction and in his presence and
in the presence of at least one witness
Made in a will
• Spouse or partner
• Parent or child
• Brother or sister
• Grandparent or grandchild
• Niece or nephew
• Stepfather or stepmother
• Half brother or sister
• Friend of long-standing
The Human Tissue Act (2004) does not include provision for family members to overturn an individual’s stated desire to donate
Professional Development Programme for Organ Donation16
UK Organ Donor Register
Registration with the ODR is viewed as consent by the Human Tissue Act (2004) and as authorisation for donation by the Human Tissue (Scotland) Act 2006.
Registrations on UK Organ Donor Regsiter
0
2
4
6
8
10
12
14
16
18
1994 1996 1998 2000 2002 2004 2006 2008 2010
year
mill
ion
po
pu
lati
on
• origin : 1994
• ≈ 1 million registrants added each year
• little apparent effect of media campaigns or adverse publicity
• maintained by NHS BT
• can be accessed 24 / 7 via SNO-OD or directly through the Duty Office at ODT on 0117 9757575
Professional Development Programme for Organ Donation17
UK Organ Donor Register
Any clinician can access the ODR by calling the Duty Office on 0117 9757575. Details of registration can be faxed to clinical areas.
• registrations are generally ‘en passant’ events
– DVLA
– GP registration form
– Boots Advantage Card
• details of registrations confirmed by post, and includes a donor card
• registration with the ODR may become part of the QOF from primary care
Professional Development Programme for Organ Donation18
UK Organ Donor Register
Any clinician can access the ODR by calling the Duty Office on 0117 9757575. Details of registration can be faxed to clinical areas.
• average age of registration significantly lower than the mean age for donation (which is rising)
• immediate impact of ODR on donation rates is uncertain
• ODR should be viewed as a medium term strategy
• whilst only minority of donors are on the ODR, the help that it makes in decision making should not be underestimated
Professional Development Programme for Organ Donation19
Use of the ODR in the family approach
www.organdonation.nhs.uk/ukt/about_us/professional_development_programme/pathways.jsp
.
The Human Tissue Act 2004 and
the Human Tissue (Scotland) Act
2006 give primacy to the wishes of
the individual. Before approaching
a family, clinicians should confirm
whether their patient is on the
ODR since this has a direct
influence on the subsequent
approach to the individual’s next of
kin.
Professional Development Programme for Organ Donation20
Any clinician can access the ODR by calling the Duty Office on 0117 9757575. Details of registration can be faxed to clinical areas.
Information required to access ODR:
• Patient name
• Patient date of birth
• Patient address including postcode
• Contact details, including the name of the hospital and specific clinical area.
Use of the ODR in the family approach
Professional Development Programme for Organ Donation21
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
Presumed Consent
“A system of this kind seems to have
the potential to close the aching gap
between the potential benefits of
transplant surgery in the UK and the
limits imposed by our current system of
consent”
Gordon Brown
January 2008
‘The systematic literature review showed an apparent association between higher donation rates and opt out systems in countries around the world………….’
ODTF, November 2008
Professional Development Programme for Organ Donation22
‘Consent’ for Donation‘hard’ opt out system
Organs retrieved from deceased adults unless they have registered to opt out. Family unable to object even if they are aware of deceased wishes not to donate.
Examples: Austria, Singapore
‘soft’ opt out system
Organs retrieved from deceased adults unless they have registered to opt out. Families have the right to object, although requirements to consult the family vary.
Examples: Spain, Belgium
‘hard’ opt in system
Organs can be retrieved from adults who have registered a wish to donate. Relatives are not able to oppose these wishes.
‘soft’ opt in system
Organs can be retrieved from adults who have registered a wish to donate. It is normal practice to consult with families and allow them to oppose donation.
Examples: UK, USA, Australia
‘Presumed consent is something of a misnomer. The Taskforce prefers to use the term ‘opt out’.
ODTF, November 2008
Professional Development Programme for Organ Donation23
The Taskforce’s enquiry into opting out
The Taskforce’s members came to this review of presumed consent with an open mind.
ODTF, November 2008
• Will presumed consent be effective?
• Are there any ethical and legal obstacles?
• Will presumed consent be acceptable to– healthcare professionals?
– general public?
– patients and their families?
• What are the practicalities?– timescales
– costs
Professional Development Programme for Organ Donation24
Presumed Consent in Spain
Spain does not have an opt-out register, nor does the Organización Nacional de Trasplantes promote public awareness of the 1979 presumed consent legislation, or mention the legislation to families of potential donors.
Rafael Matesanz
• Presumed consent enacted in 1979; no change in donation rates for the decade that followed
• Little operational impact upon how families are approached
• Spanish model applied successfully elsewhere without it
Professional Development Programme for Organ Donation25
Conclusions of the ODTF on opting out
The more the Taskforce examined the evidence, the less obvious the benefit [of an opt out system] was revealed to be.
ODTF, November 2008
• distract attention away from essential improvements
to systems and infrastructure and from the urgent
need to improve public awareness and understanding
of organ donation.
• challenging and costly to implement successfully.
• no convincing evidence that it would deliver
significant increases in the number of donated organs.
• opt out systems should be reviewed in five years’
time in the light of success achieved in increasing
donor numbers through implementation of the 14
recommendations of the [original Taskforce report].
Professional Development Programme for Organ Donation26
Improved family consent rates
• information discussed during the request
• perceived quality of care of the donor
• understanding of brain stem death
• specific timing of the request
• setting in which the request is made
• the approach and skill of the individual making the request.
• ensuring that adequate time is available both to make the request and to allow families to consider the request also
The current literature comes almost exclusively from the US. The donation rates seen in many of these studies are higher than those in the UK, so there is some reason to believe that similar strategies might have an even larger effect in the UK,
SME: consent / authorisation Master ClassElla Poppitt
27
Professional Development Programme for Organ Donation28
• Background to Co-ordination service in relation to consent /
authorisation
• Approaches to consent / authorisation
‒ Long contact
‒ ‘Planned approach’ / ‘Collaborative approach’
• International evidence for practice
‒ Evidence from IHC model
• The process of consent / authorisation
Session Outline
Professional Development Programme for Organ Donation29
UK Co-ordination Service:Historical Development
Weaknesses
• First co-ordinator appointed in 1979
• Developed historically in an ad hoc manner
• In response to local transplant need rather
than as a systematic approach to co-
ordination service
• Late 70’s DTCs locally employed within
trusts that have a transplant programme
• Early role – recipient orientated, minimal
responsibility /time spent on ICUs
• Donors facilitated ‘from a distance’ until mid
80’s
• Dual role development
Professional Development Programme for Organ Donation30
xxx
Audited Patients Was patient ever ventilated?
Was BSD a likely diagnosis?
Were BSD tests performed?
Was BSD diagnosed?
Were there any absolute contraindications?
Was subject of solid organ donation considered?
Were Next of Kin offered donation?
Was consent / authorisation obtained?
Did organ donation occur?
Historical Point of referral to Co-ordinator staff
Professional Development Programme for Organ Donation31
Baseline PDA Data from 2003/04A transition from 2003/4 to the ODFT
• 30% - patients BSD likely never
tested
• 8% - no record of donation
considered
• 7% families of BSD patients not
approached
• 84% cases no DTC involvement
in approach
Organ Donation Task Force Established in 2007, Report Published in 2008
Professional Development Programme for Organ Donation32
ODTF: Clinical Collaboration
Collaborative of embedded donor co-ordinators and clinical ‘champions’
Recommendation 1 and 9
UK wide ODO established – responsibility
of NHSBT. Additional co-ordinators,
embedded within critical care areas, should
be employed… There should be a close
and defined collaboration between donor
co-ordinators, clinical staff and donation
champions
Professional Development Programme for Organ Donation33
• At the January 2007 Taskforce meeting there were presentations from Rafael
Matesanz and Francis Delmonico from Spain and the US.
• It was agreed that US and Spain have had major success in increasing their rates of
organ donation.
• It was acknowledged that their legal environments, cultural and societal influences
were different. However, the similarities were important and included:
ODTF Report: Findings From International Models of Practice
1. Clear and visible leadership within organ donation.
2. Identification of clear roles and responsibilities throughout out the donation
pathway.
3. A holistic view of the donation pathway, ensuring that each step is properly
managed and measured.
4. Recognition of the important contribution made by all on the donation
pathway.
5. The need to establish a culture whereby organ donation is the routine, rather
than the exception.
International Models and consent / authorisation for organ donation
Professional Development Programme for Organ Donation35
Organ Donation: The Spanish Approach
• Recognising the importance of a central co-ordinating organisation
• Structured a co-ordinator network that focuses on performance, but recognises: The
contribution that doctors make in increasing organ donation.
• That DTC’s within hospitals can have a bigger impact than those coming in from
outside.
• They haven’t relied upon changes to the legislation and donor registries to increase
donation.
• Hospitals are compensated for the effort and resources they put in to organ donation,
• Organ donation features as a main part of doctors’ training.
• Each step on the donation pathway is audited and measured, e.g. the declaration of
brain stem death.
• The appropriate use of organs from more elderly donors.
• It was also noted that, according to Rafael Matesanz:
‘ ...of the British who died in Spain in 2005 all, who were eligible for donation (41 in total), went on to become organ donors.’
Professional Development Programme for Organ Donation36
Organ Donation: The US Approach
• To take a very direct approach as to what is expected from hospitals, this is included in
agreements with hospitals.
• Clear goals along the wider transplantation pathway, including the number of donors
and transplants.
• Increased quality and quantity of life after transplant and cost efficiency
• Clear guidance on death and when donation is appropriate.
• Robust infra-structure from donation to transplantation.
• Cumulated in ‘The Collaborative
Professional Development Programme for Organ Donation37
‘Organ Donation Breakthrough Collaborative’
• Agreed definitions for donation
• Examined and shared the identified ‘best practices’
• Defined clear goals and timeline and points of measurement along the
donation pathway
• Created a collaborative environment for practice:
‒ Locally based OPO staff in hospitals: Long Contact
‒ Rapid ,early referral, linkage and planning of approach (the ‘team
huddle’)
‒ Integrated management of donation process
‒ Pursuit of every donation opportunity
Professional Development Programme for Organ Donation38
International Practice: The Role of the SN-OD
• Seen as part of clinical team
• Ability to develop & maintain consistent working
relationships
• Improve Donation Systems
• Provide immediate on site management
• Intrinsically involved in family approach
• Ability to instigate early & extended contact
“In having trained co-ordinators located directly within donation centres, who are linked to the regional co-ordinators. They have a sense of involvement and active
participation in the whole donation process” Matesanz et al 2003
The Spanish, Italian & US
models
all focussed on placing
the responsibility
for donation on Co-
ordinators who
are located directly
within the
donor hospital
Professional Development Programme for Organ Donation39
Long Contact: Early and Extended Interaction with Families
Impact of DTC presence during brain death discussion and time spent with
families:
•Co-ordinator present during brain death discussion consent / authorisation rate
63% vs. 34%
•< 30 mins consent / authorisation rate 46%
•> 30 mins consent / authorisation rate 62%
•> 3 hrs consent / authorisation rate 75 %
(Shafer 2004)
Professional Development Programme for Organ Donation40
Impact of Hospital Based Co-ordinators
Spain
1989
14 donors pmp
1999
33 donors pmp
Matesanz 2004
Northern Italy
1997
8 donors pmp
2005
30 donors pmp
Simini 2001
US55% increase
in donation
in States
with an IHC
intervention
Shafer 2004
What Do We Know About consent / authorisation For Organ Donation: Factors and Evidence to Consider
Professional Development Programme for Organ Donation42
Factors influencing relatives decision for organ donation
• Concrete knowledge of
deceased wishes regarding
donation
• Extended families’ view of
donation
• Giving meaning to death
• Things that happened in hospital
that were perceived as positive
or negative
• Information discussed during the
request
• Perceived quality of care for the
potential donor
• Understanding of brain death
• Specific timing of the request
• Setting in which the request is
made
• Approach and expertise of the
individual making the request
(Simpkin et al, 2009 BMJ Systematic review) (Sque & Long 2003)
Professional Development Programme for Organ Donation43
Factors That Predispose Families to Say ‘Yes’ to Donation
The family understands there is no hope for their loved
one’s survival;
They feel their loved one received good care;
They feel well-treated at hospital;
The approach is timed on the basis of the family’s
readiness, not the staff’s readiness;
They are given adequate information about donation;
They had previously discussed donation with the donor
(VWV 2010)
Professional Development Programme for Organ Donation44
Research That Links Adequate Information to consent / authorisation for Donation
Families who spend more time in the conversation and discussed
more issues were 5 times more likely to donate (Siminoff, 1995)
Compared to non-donor families, donor family members were
significantly more likely to feel they were given enough information to
make a decision and that the information was presented clearly. (Rodrigue, Scott & Oppenheim, 2003)
The increased time with the family directly influenced the number of
topics discussed and families’ consent / authorisation to donation (Siminoff et al, 2009)
Professional Development Programme for Organ Donation45
Research Linking Family Understanding of Death to consent / authorisation for Donation
Donor FamiliesNon-Donating
Families
Understood love one is dead before request (Franz, 1997)
83% 56%
Known death was near when asked about donation (DeJong, 1998)
69% 46%
Accepted brain death as death (Siminoff, 2003)
62.5% 40%
Understood brain death(Rodrigue, 2006)
70.5% 29%
Professional Development Programme for Organ Donation46
Research Linking Co-ordinator Involvement with Increase in consent / authorisation Rates for Organ
DonationResearcher XXX consent /
authorisation Rate
Klieger, 1994 • Doctors• Coordinators • Working collaboratively
• 9%• 67%• 75%
Siminoff et al, 1995 • Families who meet with OPO requesters 3 times more likely to donate
Beasley, 1997• Coordinators• Hospital Staff
• 74%• 25%
Gortmaker et al, 1998 • Doctors• Coordinators • Working collaboratively
• 53%• 62%• 72%
Siminoff, 2001 • Talking to coordinator before being asked to make a decision strongly associated with consent / authorisation
Rodrigue et al, 2008 • Coordinators• All others without coordinator present
• 72%• 37%
ACRE, 2009 • No significant difference between 2 groups
Professional Development Programme for Organ Donation47
ACRE Trial
Findings & Conclusions:
• Concluded that more focus should be on
long contact where the Specialist Nurse
for Organ Donation is involved with the
family before the approach is made.
• Anecdotal reports also suggested that the
trial itself had improved the relationship
between intensive care unit staff and
Specialist Nurses for Organ Donation.
• Young et al. Effect of “collaborative
requesting” on consent / authorisation rate
for organ donation: randomised controlled
trial (ACRE). BMJ, 339,b3911, 2009.
Randomised Controlled Trial
• “Showed no increase of consent /
authorisation rates for organ donation
when collaborative requesting was used in
place of routine requesting by the patient’s
physician.”
• Did not support either collaborative or
medical requesting.
To determine whether collaborative requesting increased consent / authorisation for organ donation from the relatives of patients declared dead by BSD criteria
Professional Development Programme for Organ Donation48
ACRE Trial – Results
Patients randomised(n = 201)
Allocated to Collaborative Requesting (n = 100)Received allocated intervention (n = 67)consent / authorisations to donation when followed allocated intervention = 45/67
Allocated to Routine Requesting (n = 101)Received allocated intervention (n = 73)consent / authorisations to donation when followed allocated intervention = 44/73
Proportion of relatives consenting / authorising
to organ donation60.2%
Proportion of relatives consenting/ authorising
to organ donation67.1%
NSD (p=0.4)
Long Contact and the ‘In-house Co-ordinator’ model in the UK
Professional Development Programme for Organ Donation50
UK: ‘In-house’ Specialist Nurse for Organ Donation Data
• In-house Specialist Nurse for Organ
Donation (SNOD) data was collected
over the period 2008-09 in 14 Trusts
• Units which already had established
embedded Specialist Nurses for Organ
Donation did not take part in the ACRE
study.
• Families who initiated conversations
were excluded.
• 68% families consent / authorisationed
when a SNOD was involved
• 43% no SNOD involved
Hospitals SNOD Involved
No SNOD Involved
1 (N=15) 100% 56%
2 (N=19) 100% 50%
3 (N=10) 89% 0%
4 (N=16) 83% 30%
5 (N=14) 77% 0%
6 (N=30) 74% 57%
7 (N=45) 69% 56%
8 (N=43) 68% 50%
9 (N=37) 66% 13%
10 (N=35) 66% 0%
11 (N=15) 64% 25%
12 (N=7) 60% 100%
13 (N=33) 50% 40%
14 (N=19) 44% 33%
consent / authorisation Rates (N=337)
Professional Development Programme for Organ Donation51
The Basis for NHSBT’s Strategy for consent / authorisation / Authorisation: IHC’s
• Based on applicable and transferrable elements of other international models.
• Incorporated strategies and initiatives from evidence in existing research.
• Existing evidence suggested that involvement of a SN-OD in the request process
correlated with higher rates of consent / authorisation.
No evidence has advocated a solely medical model for consent / authorisation
• A strategy to engender collaborative working practices has internationally produces
higher rates of donation.
• Core Objective: The Approach for donation should be planned collaboratively between
the clinical staff and the SN-OD prior to a joint approach being made.
Professional Development Programme for Organ Donation52
Short and Long Contact: Models of Practice
INFORMAL CONTACT/ BEDSIDE CONVERSATIONS
CONFIRMATORYCONVERSATION(S) as needed
DONATION CONVERSATION
DEATH CONVERSATIONS
SHORT
CONTACT MODEL
Historically where SN-OD entered the donation discussion
LONG CONTACT MODEL
By employing ‘long contact’ the SN-OD engages earlier with the family and has
an extended period of interactionto build up visibility and rapport
with the NOK
Professional Development Programme for Organ Donation53
xxx
Audited Patients Was patient ever ventilated?
Was BSD a likely diagnosis?
Were BSD tests performed?
Was BSD diagnosed?
Were there any absolute contraindications?
Was subject of solid organ donation considered?
Were Next of Kin offered donation?
Was consent / authorisation obtained?
Did organ donation occur?An outstanding challenge is
to adopt this approach acrossall critical care areas in the UK
Co-ordinator Strategy to ensure early referral to
Co-ordinator staff: implemented and reinforced by ODTF document
UK Potential Donor Audit Data and consent / authorisation
Professional Development Programme for Organ Donation55
Rates of Referral to SN-OD for Donation(ODT, PDA data 2003-2009)
• ODTF aspiration to achieve 100% rate of referral to Co-ordinator • Referral rates have dramatically increased
455
1001990
1042
9661003
293
0
200
400
600
800
1000
1200
2003/2004 2004/2005 2005/2006 2006/2007 2007/2008 2008/2009 2009/2010(6/12m data)
21.5%
75.2% 78.4%82.5%
85.2% 88%
89%
Professional Development Programme for Organ Donation56
SN-OD Involvement in the Request for Donation(ODT, PDA data 2003-2009)
• Increasing rates of Co-ordinator involvement in request for donation.• Challenge is to maximise this further ensuring a ‘trained’ professional is always involved
in the approach for donation.
31%
192
453
371
318
223
185181
0
50
100
150
200
250
300
350
400
450
500
2003/2004 2004/2005 2005/2006 2006/2007 2007/2008 2008/2009 2009/2010(6/12m data)
16.9%18.4%
22.7%
31.2%
39.3%
46.5%
45.2%
Professional Development Programme for Organ Donation57
consent / authorisation Rate for Donation when SN-OD Involved in Request
31%
7470.8 70.6
5153
65.166.8
65.1 63.6
54.953.854.7 54.156.3
0
10
20
30
40
50
60
70
80
2003/2004 2004/2005 2005/2006 2006/2007 2007/2008 2008/2009 2009/2010(6/12m data)
Consent rate w hen DTC involvedConsent rate w hen DTC not involved
(ODT, PDA data 2003-2009) ; NB Excludes families that initiated the approach
The process of consent / authorisation
Professional Development Programme for Organ Donation59
NHSBT Education & Training Programme
• Delivered by trainers from the US
• Delivery of training programme to all SN-OD’s
Clinicians Workshops
• consent / authorisation / Authorisation & Hospital Development
• Based on a very specific model aimed at addressing:
Addressing specific needs/concerns
Probing techniques
Using open ended questioning techniques
Validating the families decision
• Continually updated/modified to UK data from the PDA
Professional Development Programme for Organ Donation60
SN-OD Approach to the Donation Conversation
Aim:
To gain a definite ‘Yes’ or ‘No’ to
donation based on accurate
information and discussion
Professional Development Programme for Organ Donation61
Principles of the Donation Conversation
ConfirmingAssessing
Educating
Surfacing Core ConcernsProviding consent / authorisation
Bringing to Conclusion
Conversational ‘Bridge’ into the subject of
donation
• The donation discussion should not be based on a ‘Yes/ No’ approach, information should always be given to enable the family to make a fully informed decision
• A higher rate of consent / authorisation is evident when the family feel that they have received enough information to make an informed decision about organ donation
(Rodrigue et al, 2006; Rosel et al; 1999
Professional Development Programme for Organ Donation62
SN-OD Training:Points Advised to Note in the Donation Conversation
Suggested behaviours/ language Behaviours/Language to avoid
Display Empathy Encouraging hope
Say machine is pumping airAvoid technical jargon i.e.‘Machine is breathing’
‘We hoped the machine would keep him alive’
Saying the machine is keeping him alive
Talk to the family Talking to the body
Alternate ‘good’ and ‘bad’ newsTelling the family you have a requirement to ask about donation
Progressively depersonalize‘Tom’s heart, Your son’s heart, His heart, The heart...’
Be consistent
consent / authorisation: Where are we now?
Professional Development Programme for Organ Donation64
New Potential Donor Audit Data(Oct 2009-April 2010)
Neurological death testing
rate (%)
DBD referral rate (%)
DBD approach rate (%)
DBD consent / authorisat
ion rate (%)
consent / authorisation
rate where a SN-OD was involved in the approach
consent / authorisation rate where no SN-OD was involved in
the approach
76.6 86.2 93 63.2 70.1 51.3
DCD referral rate (%)
DCD approach rate (%)
DCD consent / authorisat
ion rate (%)
consent / authorisation
rate where a SN-OD was involved in the approach
consent / authorisation rate where no SN-OD was involved in
the approach
30.8 27.6 55.6 67.8 42.6
PDA revised in line with Donation Advisory Group membership in 2009
Professional Development Programme for Organ Donation65
Public Support for Organ Donation Remains High
www.organdonor.gov/survey2005
The challenge is to translate such widespread support into consent / authorisation for organ donation
Professional Development Programme for Organ Donation66
The Future...
• NICE guidance pending
Applications for membership
Role of NICE guidance and adoption in practice
• Realising the ODTF recommendations and progress towards achieving desired
outcomes.
• Further developing the role and involvement in each approach for donation of the
expanded workforce of SN-OD’s.
• Ensuring opportunities for obtaining consent / authorisation /authorisation for organ
donation are maximised at every opportunity, every time.
• Ensure a long term collaborative working relationship is established between SN-OD’s,
CL-OD’s and the clinical environment.
Break
67
Organ donation in a multi-ethnic and multi-faith contextProfessor Gurch RandhawaDirector, Institute for Health ResearchUniversity of Bedfordshire
68
Professional Development Programme for Organ Donation69
Introduction
• Although over 3,000 people in the UK received an organ transplant in 2007/08, another
1,000 died after having waited in vain on the waiting list, which currently numbers over
8,000 people.
• Data relating to organ donor waiting lists and organ donors highlights significant
disparities between ethnic groups. For instance, UK data shows that people of South
Asian (Indian, Pakistani, Bangladeshi or Sri Lankan origin) or African-Caribbean
descent are three to four times more likely than white people to develop end-stage
renal disease, largely because of the higher prevalence of type 2 diabetes
• UK data shows them to make up 23% of the kidney waiting list but 8% of the
population. A further concern is that only 3% of donors are from these communities.
• UK Potential Donor Audit shows a 40% family refusal rate for White families and 70%
refusal rate among non-White families
Professional Development Programme for Organ Donation70
Ethnicity of deceased solid organ donors in the UK 1 April 2007–31 March 2009
Ethnicity 2007-2008 2008-2009UK
Population
N % N % %
White 777 96.0 857 95.2 92.1
Asian 13 1.6 17 1.9 4
Black 11 1.4 13 1.4 2
Chinese 1 0.1 2 0.2 0.4
Other 7 0.9 11 1.2 1.5
TOTAL 809 900
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Ethnicity of deceased heartbeating kidney donors and recipients (1 April 2007 – 31 March 2009) and transplant
list patients at 31 March in the UK
Ethnicity Donors Transplant recipientsActive transplant list
patientsUK pop.
2007-2008 2008-2009 2007-2008 2008-2009 2008 2009
N % N % N % N % N % N % %
White 568 95.6 554 94.9 934 83.5 867 79.1 5298 76.0 5378 74.8 92.1
Asian 10 1.7 12 2.1 101 9.0 138 12.6 998 14.3 1077 15.0 4
Black 11 1.9 7 1.2 62 5.5 70 6.4 507 7.3 552 7.7 2
Chinese 1 0.2 2 0.3 10 0.9 8 0.7 74 1.1 78 1.1 0.4
Other 4 0.7 9 1.5 11 1.0 13 1.2 98 1.4 104 1.4 1.5
Not reported
0 - 0 - 0 - 0 - 5 - 1 - -
TOTAL 594 584 1118 1096 6980 7190
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Ethnicity of deceased heartbeating pancreas donors and recipients, 1 April 2007-31 March 2009, and transplant list
patients at 31 March in the UK
Ethnicity Donors Transplant recipientsActive transplant list
patientsUK pop.
2007-2008 2008-2009 2007-2008 2008-2009 2008 2009
N % N % N % N % N % N % %
White 287 94.1 294 95.5 195 93.3 158 92.4 200 92.6 274 93.5 92.1
Asian 6 2.0 3 1.0 9 4.3 8 4.7 15 6.9 13 4.4 4
Black 8 2.6 4 1.3 2 1.0 3 1.8 1 0.5 2 0.7 2
Chinese 1 0.3 1 0.3 2 1.0 0 0.0 0 0.0 0 0.0 0.4
Other 3 1.0 6 1.9 1 0.5 2 1.2 0 0.0 4 1.4 1.5
TOTAL 305 308 209 171 216 293
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Ethnicity of cardiothoracic donors and recipients 1 April 2007-31 March 2009, and transplant list patients at 31
March in the UK
Ethnicity Donors Transplant recipientsActive transplant list
patientsUK pop.
2007-2008 2008-2009 2007-2008 2008-2009 2008 2009
N % N % N % N % N % N % %
White 194 93.7 239 95.6 237 94.4 254 92.0 357 93.5 303 94.1 92.1
Asian 3 1.4 4 1.6 8 3.2 11 4.0 11 2.9 12 3.7 4
Black 5 2.4 2 0.8 4 1.6 6 2.2 10 2.6 4 1.2 2
Chinese 0 0.0 1 0.4 1 0.4 3 1.1 1 0.3 1 0.3 0.4
Other 5 2.4 4 1.6 1 0.4 2 0.7 3 0.8 2 0.6 1.5
TOTAL 207 250 251 276 382 322
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Ethnicity of liver donors and recipients 1 April 2007-31 March 2009, and transplant list patients at 31 March in
the UK
Ethnicity Donors Transplant recipientsActive transplant list
patientsUK pop.
2007-2008 2008-2009 2007-2008 2008-2009 2008 2009
N % N % N % N % N % N % %
White 621 94.5 661 93.0 549 83.2 559 79.7 222 82.8 284 84.0 92.1
Asian 14 2.1 23 3.2 65 9.8 91 13.0 28 10.4 34 10.1 4
Black 13 2.0 9 1.3 28 4.2 26 3.7 9 3.4 9 2.7 2
Chinese 1 0.2 1 0.1 6 0.9 6 0.9 0 0.0 2 0.6 0.4
Other 8 1.2 17 2.4 12 1.8 19 2.7 9 3.4 9 2.7 1.5
TOTAL 657 771 660 701 268 338
Professional Development Programme for Organ Donation75
Time actively registered on list for kidney transplant, UK (1998-2000)
Ethnic originAverage wait
median (days)
White 722
South Asian 1496
Black 1389
Other 948
• Non white communities have to wait
twice as long for a kidney transplant
• The average wait for white communities
is 2 years for a kidney transplant versus
4 years for non white communities
Professional Development Programme for Organ Donation76
Relatives’ concerns about deceased donation
• Which organs will be donated?
• Who will receive the organs?
• Will the fact that consent / authorisation has been given affect the treatment the patient
receives?
• Will the patient really be dead when the organs are removed?
• Will the organs be used for research?
• Will the body be damaged by organ donation?
• Will the funeral/cremation be delayed?
Professional Development Programme for Organ Donation77
Relatives’ fears with deceased donation
• Fear of death may act as a barrier to thinking about or discussing donation
• The removal of organs after death may be seen as violating the sanctity of the
deceased
• There may be a wish to bury or cremate the loved one whole and therefore cutting up
the body may be frowned upon
• People may feel unhappy about their loved one’s organs being inside another person
• Fears may exist that the intensive care staff will not try as hard to save the patient if it
is known that consent / authorisation for organ donations has been given
• Religion could be a predisposing factor as it may be felt that cadaveric transplants
violate religious principles
Source: Randhawa (1995)
Professional Development Programme for Organ Donation78
What does the research say?
• “I would not donate my eyes, ever, because of the ceremony prior to cremation when
people come to the funeral to see the body. I don’t want to not have any eyes.”
• “If the religious leaders gives us a clear cut opinion on this matter then we have less
confusion. Religion is for people to live well; it shouldn’t’ be an obstacle to something
positive like organ donation. More discussion and information will help us to proceed in
this direction.”
• “I don’t like the idea of my relatives having to see my body been carved up.”
• “I’m not sure about life after death, but if there is life I want to go complete.”
• “They (South Asian families) look after their own don’t they.”
Davis & Randhawa (2004); Randhawa (1998d)
Professional Development Programme for Organ Donation79
Islam and Organ Donation
• “Whosoever saves the life of one person
it would be as if he saved the life of all
mankind.” Revelation, Chapter 21, verses 4 and 5
• “If you happened to be ill and in need of
a transplant, you certainly would wish
that someone would help you by
providing the needed organ.”
Sheikh Dr M A Zaki Badawi, Principal, Muslim College,
London
Professional Development Programme for Organ Donation80
Christianity and Organ Donation
• “In eternity we will neither have nor need our earthly
bodies: former things will pass away, all things will
be made new”. Holy Qur’an, chapter 5, vs 32
• “Every organ transplant has its source in a decision
of great ethical value…. Here lies the nobility of a
gesture which is a genuine act of love. There is a
need to instil in people’s hearts a genuine and deep
love that can find expression in the decision to
become an organ donor.” His Holiness Pope John Paul II
Professional Development Programme for Organ Donation81
Judaism and Organ Donation
• “In Judaism there is strong tradition of caring
for the sick. Pikuach nefesh (saving of life)
takes priority. The Talmud rules that one is
even permitted to infringe the laws of the
Sabbath for this purpose.
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Buddhism and Organ Donation
• “Organ donation is an extremely positive
action. As long as it is truly the wish of the
dying person, it will not harm in any way the
consciousness that is leaving the body. On
the contrary, this final act of generosity
accumulates good karma.”
Sogyal Rinpoche – The Tibetan Book of Living and
Dying
Professional Development Programme for Organ Donation83
Hindu Dharma and Organ Donation
• “As a person puts on new garments giving up
the old ones the soul similarly accepts new
material bodies giving up the old and useless
ones.”
Bhagavad Gita, Chapter 2:22
Professional Development Programme for Organ Donation84
Sikhism and Organ Donation
• “The dead sustain their bond with the living
through virtuous deeds”.
Guru Nanak, Guru Granth Sahib
• “The Sikh religion teaches that life continues
after death in the soul, not the physical body.
The last act of giving and helping others
through organ donation is both consistent
with, and in the spirit of, Sikh teaching.”
Dr Indarjit Singh OBE, Director of Network Sikh
Organisations UK, endorsed by Sikh Authorities in
Amritsar, Punjab
•
Professional Development Programme for Organ Donation85
Some issues to consider
• Donor identification - Rates of referral to ITU
• Approaching the family – Role of extended family
• Definition of death – Brain-stem death
• Religious and cultural values
• Complexities of grief – Western and Eastern Bereavement models
• Death rituals – Burial/cremation
Professional Development Programme for Organ Donation86
Further Reading
• Randhawa G, Brocklehurst A, Pateman R, Kinsella S, Parry V (2010) Are religious communities useful in promoting the organ donation debate: Lessons from the United Kingdom. Organs, Tissues and Cells – Journal of the European Transplant Co-ordinator’s Association, 13, 49-54.
• Randhawa G, Brocklehurst A, Pateman R, Kinsella S, Parry V (2010) ‘Opting-in or Opting-out?’ The views of the UK’s Faith leaders in relation to organ donation. Journal of Health Policy. 96, 36-44.
• Randhawa G, Brocklehurst A, Pateman R, Kinsella S, Parry V (2010) Faith leaders united in their support for organ donation – Findings from the Organ Donation Taskforce’s Study of attitudes of UK faith and belief group leaders to an opt-out system. Transplant International. 23, 140-146.
• Davis C. & Randhawa G. (2004) “Don’t know enough about it!” - Awareness and attitudes towards organ donation and transplantation among the black Caribbean and black African population in Lambeth, Southwark, and Lewisham, UK. Transplantation. 78, 420-425.
• Randhawa G. (1998) An exploratory study examining the influence of religion on attitudes towards organ donation among the Asian population in Luton, UK. Nephrology Dialysis Transplantation. 13, 1949-54.
• Randhawa G. (1998) Coping with grieving relatives and making a request for organs: Principles for staff training. Medical Teacher. 20, 247-249
• Randhawa G. (1997) Enhancing the health professional's role in requesting transplant organs. British Journal of Nursing. 6, 429-434.