Transcript Slide 1

Consent /Authorisation
Paul Murphy
Gurch Randhawa
Ella Poppitt
September 2010
“Improving organ donation within your hospital”
Professional Development Programme for Organ Donation
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Professional Development Programme for Organ Donation
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Agenda
1
Identification, referral and consent / authorisation:
an overview
40mins
2
Approaches to consent / authorisation
40mins
Break
15 mins
Cultural and religious influences
45mins
Break
15 mins
Close
5mins
3
6
Professional Development Programme for Organ Donation
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Masterclass Objectives
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
Professional Development Programme for Organ Donation
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Identification, referral and consent
/ authorisation
An overview
Dr Paul Murphy
5
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
Consent / authorisation is the
biggest single obstacle to
donation
Considerable evidence for
modifiable factors within the
family approach.
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
Professional Development Programme for Organ Donation
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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
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 Donation
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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
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Understanding the bigger picture
• 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
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Consent / authorisation for
donation
10
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 Donation
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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 Donation
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What is the relevant law in England, Wales and
Northern Ireland?
Human Tissue Act (2004) addresses the removal of organ and tissue from
cadavers
“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) specifically
uses the term
‘consent’, even
when this is given
by families.
Human Tissue Act, 2004
[ Reg 3, SI 2006 No. 1260]
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Who can give consent for donation?
.. Human Tissue Act (2004) places emphasis of the autonomy of the individual
For adults
For children
•
• 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’
•
•
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
Professional Development Programme for Organ Donation
If no decision is made, how can consent be
given?
Nominated Representatives:
Qualifying Relatives:
• One or more persons
• Spouse or partner
• Made orally in the presence of two
witnesses or in writing either:
• Parent or child
• Brother or sister
 Signed in the presence of at least one
witness
• Grandparent or grandchild
 At his direction and in his presence and
in the presence of at least one witness
• Stepfather or stepmother
 Made in a will
• Niece or nephew
• 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
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UK Organ Donor Register
• origin : 1994
Registrations on UK Organ Donor Regsiter
• ≈ 1 million registrants added
each year
million population
18
16
14
• little apparent effect of media
campaigns or adverse publicity
12
10
8
6
• maintained by NHS BT
4
2
0
1994
1996
1998
2000
2002
year
2004
2006
2008
2010
• can be accessed 24 / 7 via
SNO-OD or directly through the
Duty Office at ODT on 0117
9757575
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.
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UK Organ Donor Register
• 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
Any clinician can access the ODR by calling the Duty Office on 0117 9757575.
Details of registration can be faxed to clinical areas.
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UK Organ Donor Register
• 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
Any clinician can access the ODR by calling the Duty Office on 0117 9757575.
Details of registration can be faxed to clinical areas.
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Use of the ODR in the family approach
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.
www.organdonation.nhs.uk/ukt/about_us/professional_development_progra
mme/pathways.jsp .
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Use of the ODR in the family approach
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.
Any clinician can access the ODR by calling the Duty Office on 0117 9757575.
Details of registration can be faxed to clinical areas.
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Presumed Consent
Informed consent
Presumed consent
“A system of this kind seems to have
the potential to close the aching gap
between the potential benefits of
Spain
Belgium
US
France
Portugal
Austria
transplant surgery in the UK and the
limits imposed by our current system of
consent”
Ireland
Italy
Norway
Finland
Netherlands
Gordon Brown
Germany
Canada
January 2008
Sweden
UK
Denmark
‘The systematic literature review showed an
apparent association between higher
donation rates and opt out systems in
countries around the world………….’
Switzerland
Australia
Poland
New Zealand
Israel
0
5
10
15
20
25
Number of deceased donors
per million population, 2007
30
35
ODTF, November 2008
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‘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
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The Taskforce’s enquiry into opting out
•
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?
•
The Taskforce’s members
came to this review of
presumed consent with an
open mind.
ODTF, November 2008
What are the practicalities?
– timescales
– costs
Professional Development Programme for Organ Donation
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Presumed Consent in Spain
• 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
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
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Conclusions of the ODTF on opting out
• 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.
The more the Taskforce
examined the evidence,
the less obvious the
benefit [of an opt out
system] was revealed to
be.
ODTF, November 2008
• 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].
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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 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,
• 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
Professional Development Programme for Organ Donation
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SME: consent / authorisation
Master Class
Ella Poppitt
27
Session Outline
•
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
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UK Co-ordination Service:
Historical Development
•
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
•
No
standardisation
in practice; No
standardised
documentation
Late 70’s DTCs locally employed within
‘DTC’ rarely
involved
In approach to
family
Weaknesses
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
•
No centralised
education
strategies
Little centralised
data collection
Dual role development
Professional Development Programme for Organ Donation
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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
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Baseline PDA Data from 2003/04
A 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 Donation
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ODTF: Clinical Collaboration
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
Collaborative of embedded donor co-ordinators
and clinical ‘champions’
Professional Development Programme for Organ Donation
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ODTF Report:
Findings From International Models of Practice
•
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:
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.
Professional Development Programme for Organ Donation
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International Models and consent /
authorisation for organ donation
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.’
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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
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‘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 Donation
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International Practice: The Role of the SN-OD
The Spanish, Italian & US
models
all focussed on placing
•
Seen as part of clinical team
•
Ability to develop & maintain consistent working
relationships
the responsibility
for donation on Co-
•
Improve Donation Systems
ordinators who
•
Provide immediate on site management
•
Intrinsically involved in family approach
•
Ability to instigate early & extended contact
are located directly
within the
donor hospital
“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
Professional Development Programme for Organ Donation
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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 Donation
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Impact of Hospital Based Co-ordinators
Spain
1989
14 donors pmp
Northern Italy
1997
8 donors pmp
1999
33 donors pmp
2005
30 donors pmp
Matesanz 2004
Simini 2001
US
55% increase
in donation
in States
with an IHC
intervention
Shafer 2004
Professional Development Programme for Organ Donation
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What Do We Know About consent /
authorisation For Organ Donation:
Factors and Evidence to Consider
Factors influencing relatives decision for organ donation
•
•
Information discussed during the
•
Concrete knowledge of
request
deceased wishes regarding
Perceived quality of care for the
donation
potential donor
•
Extended families’ view of
donation
•
Understanding of brain death
•
Specific timing of the request
•
Giving meaning to death
•
Setting in which the request is
•
Things that happened in hospital
•
made
that were perceived as positive
Approach and expertise of the
or negative
individual making the request
(Simpkin et al, 2009 BMJ Systematic review)
(Sque & Long 2003)
Professional Development Programme for Organ Donation
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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 Donation
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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 Donation
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Research Linking Family Understanding of Death to
consent / authorisation for Donation
 Understood love one is dead
before request
Donor Families
Non-Donating
Families
83%
56%
69%
46%
62.5%
40%
70.5%
29%
(Franz, 1997)
 Known death was near when
asked about donation
(DeJong, 1998)
 Accepted brain death as death
(Siminoff, 2003)
 Understood brain death
(Rodrigue, 2006)
Professional Development Programme for Organ Donation
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Research Linking Co-ordinator Involvement with Increase
in consent / authorisation Rates for Organ Donation
Researcher
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
• 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
ACRE, 2009
• No significant difference between 2 groups
Beasley, 1997
• 72%
• 37%
Professional Development Programme for Organ Donation
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ACRE Trial
To determine whether collaborative requesting increased consent / authorisation for
organ donation from the relatives of patients declared dead by BSD criteria
Randomised Controlled Trial
Findings & Conclusions:
•
•
“Showed no increase of consent /
authorisation rates for organ donation
long contact where the Specialist Nurse
when collaborative requesting was used in
for Organ Donation is involved with the
place of routine requesting by the patient’s
family before the approach is made.
physician.”
•
Concluded that more focus should be on
•
Anecdotal reports also suggested that the
Did not support either collaborative or
trial itself had improved the relationship
medical requesting.
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.
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ACRE Trial – Results
Patients randomised
(n = 201)
Allocated to Routine Requesting (n = 101)
Received allocated intervention (n = 73)
consent / authorisations to donation when
followed allocated intervention = 44/73
Allocated to Collaborative Requesting (n = 100)
Received allocated intervention (n = 67)
consent / authorisations to donation when
followed allocated intervention = 45/67
Proportion of relatives consenting /
authorising
to organ donation
60.2%
Proportion of relatives consenting/
authorising
to organ donation
67.1%
NSD (p=0.4)
Professional Development Programme for Organ Donation
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Long Contact and the ‘In-house Coordinator’ model in the UK
UK: ‘In-house’ Specialist Nurse for Organ Donation Data
•
•
In-house Specialist Nurse for Organ
Hospitals
SNOD
Involved
No SNOD
Involved
Donation (SNOD) data was collected
1 (N=15)
100%
56%
over the period 2008-09 in 14 Trusts
2 (N=19)
100%
50%
3 (N=10)
89%
0%
Units which already had established
4 (N=16)
83%
30%
embedded Specialist Nurses for Organ
5 (N=14)
77%
0%
6 (N=30)
74%
57%
7 (N=45)
69%
56%
study.
8 (N=43)
68%
50%
Families who initiated conversations
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%
Donation did not take part in the ACRE
•
were excluded.
•
68% families consent / authorisationed
when a SNOD was involved
•
43% no SNOD involved
consent / authorisation Rates (N=337)
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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 Donation
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Short and Long Contact: Models of Practice
INFORMAL CONTACT/
BEDSIDE CONVERSATIONS
Historically where
SN-OD entered the
donation discussion
DEATH CONVERSATIONS
CONFIRMATORY
CONVERSATION(S) as needed
By employing ‘long contact’ the SN-OD
engages earlier with the family and has
an extended period of interaction
to build up visibility and rapport
with the NOK
DONATION CONVERSATION
SHORT
CONTACT MODEL
LONG CONTACT MODEL
Professional Development Programme for Organ Donation
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xxx
Audited Patients
Was patient ever ventilated?
Was BSD a likely diagnosis?
Were BSD tests performed?
Was BSD diagnosed?
Co-ordinator Strategy to
ensure early referral to
Co-ordinator staff: implemented and
reinforced by ODTF document
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 across
all critical care areas in the UK
Professional Development Programme for Organ Donation
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UK Potential Donor Audit Data
and consent / authorisation
Rates of Referral to SN-OD for Donation
(ODT, PDA data 2003-2009)
1200
82.5%
75.2%
78.4%
85.2%
88%
1000
800
1042
1003
990
966
600
1001
89%
400
455
21.5%
200
293
0
2003/2004
•
•
2004/2005
2005/2006
2006/2007
2007/2008
2008/2009
2009/2010
(6/12m data)
ODTF aspiration to achieve 100% rate of referral to Co-ordinator
Referral rates have dramatically increased
Professional Development Programme for Organ Donation
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SN-OD Involvement in the Request for Donation
(ODT, PDA data 2003-2009)
500
46.5%
450
39.3%
400
31.2%
350
453
300
371
22.7%
250
16.9%
318
18.4%
45.2%
200
223
150
181
192
185
100
31%
50
0
2003/2004
•
•
2004/2005
2005/2006
2006/2007
2007/2008
2008/2009
2009/2010
(6/12m data)
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.
Professional Development Programme for Organ Donation
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consent / authorisation Rate for Donation when
SN-OD Involved in Request
Consent rate w hen DTC involved
Consent rate w hen DTC not involved
80
74
70.8
70.6
66.8
70
65.1
65.1
63.6
56.3
60
51
53
54.7
54.1
53.8
54.9
50
40
30
31%
20
10
0
2003/2004
2004/2005
2005/2006
2006/2007
2007/2008
2008/2009
2009/2010
(6/12m data)
(ODT, PDA data 2003-2009) ; NB Excludes families that initiated the approach
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The process of consent /
authorisation
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
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SN-OD Approach to the Donation Conversation
Assessing
Understanding
Aim:
Educating
To gain a definite
‘Yes’ or ‘No’ to
donation based on
accurate
information and
discussion
Accepting
Responses
Probing for
Concerns
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Principles of the Donation Conversation
Confirming
Assessing
Educating
Conversational ‘Bridge’
into the subject of
donation
Surfacing Core Concerns
Providing consent / authorisation
Bringing to Conclusion
• 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
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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 air
Avoid 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’ news
Telling 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
Professional Development Programme for Organ Donation
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consent / authorisation: Where are
we now?
New Potential Donor Audit Data
(Oct 2009-April 2010)
Neurological
death testing
rate (%)
DBD
referral
rate (%)
76.6
86.2
DCD
referral
rate (%)
30.8
DBD
approach
rate (%)
93
DCD
approach
rate (%)
27.6
DBD
consent /
authorisati
on rate
(%)
consent /
authorisation
rate where a SNOD was involved
in the approach
consent /
authorisation rate
where no SN-OD
was involved in
the approach
63.2
70.1
51.3
DCD
consent /
authorisati
on rate
(%)
consent /
authorisation
rate where a SNOD was involved
in the approach
consent /
authorisation rate
where no SN-OD
was involved in
the approach
55.6
67.8
42.6
PDA revised in line with Donation Advisory Group membership in 2009
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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
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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.
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Break
67
Organ donation in a multi-ethnic
and multi-faith context
Professor Gurch Randhawa
Director, Institute for Health Research
University of Bedfordshire
68
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 Donation
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Ethnicity of deceased solid organ donors in the UK
1 April 2007–31 March 2009
Ethnicity
2007-2008
UK
Population
2008-2009
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
2007-2008
Active transplant list
patients
Transplant recipients
2008-2009
2007-2008
2008-2009
2008
UK
pop.
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
2007-2008
Active transplant list
patients
Transplant recipients
2008-2009
2007-2008
2008-2009
2008
UK
pop.
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
2007-2008
Active transplant list
patients
Transplant recipients
2008-2009
2007-2008
2008-2009
2008
UK
pop.
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
2007-2008
Active transplant list
patients
Transplant recipients
2008-2009
2007-2008
2008-2009
2008
UK
pop.
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
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Time actively registered on list for kidney transplant, UK
(1998-2000)
•
Non white communities have to wait
twice as long for a kidney transplant
•
Ethnic origin
The average wait for white communities
Average wait
median
(days)
is 2 years for a kidney transplant versus
4 years for non white communities
White
722
South Asian
1496
Black
1389
Other
948
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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?
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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)
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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)
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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
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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
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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
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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
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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
•
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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
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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.
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