Professional Development Programme for Organ Donation 1 Paul Murphy Gurch Randhawa Ella Poppitt September 2010 Consent /Authorisation Improving organ donation.

Professional Development Programme for Organ Donation1

Paul MurphyGurch RandhawaElla Poppitt

September 2010

Consent /Authorisation

“Improving organ donation within your hospital”


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


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


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.


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.


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


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


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


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


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


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


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


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



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




• 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


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.

http://www.organdonation.nhs.uk/ukt/about_us/professional_development_programme/pathways.jsp

http://www.organdonation.nhs.uk/ukt/about_us/professional_development_programme/pathways.jsp



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


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


‘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


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


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

http://www.ont.es/

http://www.ont.es/

http://www.ont.es/

http://www.ont.es/

http://www.ont.es/


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].


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


• 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


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


xxx




Was BSD diagnosed?




Was consent / authorisation obtained?

Did organ donation occur?

Historical Point of referral to Co-ordinator staff


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


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


• 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


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.’


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


‘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


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


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)


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


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)


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)


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)


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%


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


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


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


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)


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.


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


xxx




Was BSD diagnosed?




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


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%


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%


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


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


SN-OD Approach to the Donation Conversation

Aim:

To gain a definite ‘Yes’ or ‘No’ to

donation based on accurate

information and discussion


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


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?


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


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


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


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


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


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


Ethnicity of deceased heartbeating pancreas donors and recipients, 1 April 2007-31 March 2009, and transplant list

patients at 31 March in the UK


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


Ethnicity of cardiothoracic donors and recipients 1 April 2007-31 March 2009, and transplant list patients at 31

March in the UK


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


Ethnicity of liver donors and recipients 1 April 2007-31 March 2009, and transplant list patients at 31 March in

the UK


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


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


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?


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)


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)


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


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


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.


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


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


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

•


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


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.

Professional Development Programme for Organ Donation 1 Paul Murphy Gurch Randhawa Ella Poppitt September 2010 Consent /Authorisation Improving organ donation.

Documents

law donation

organ donation introduction

donation pathway

donation considerable

donor consent authorisation

eye tissue donation

programme atlas

trust master class