organ donation in the uk five years on from the organ donation taskforce

Organ Donation Past, Present and Future

Organ Donation in the UKFive years on from the Organ Donation Taskforce

Dr Paul MurphyNational Clinical Lead for Organ Donation

1

Organ Donation, Past Present and Future

• Organ donation in 2006

• Understand the impact of the Organ Donation Taskforce report

– Donation after circulatory death

• Learn about the landscape of deceased donation in the UK

• Accept the challenge of future interventions

– Donor identification and referral

– Donor optimisation

– Family refusal

Objectives

The Black Mountains, South Wales

http://www.odt.nhs.uk/


• Organ donation in 2006

• Understand the impact of the Organ Donation Taskforce report

– Donation after circulatory death

• Learn about the landscape of deceased donation in the UK

• Accept the challenge of future interventions

– Donor identification and referral

– Diagnosis of brain-stem death

– Donor optimisation

– Family refusal

Objectives



Deceased donors and transplant waiting lists, 2006

745 777 778 770 709 814 753 779

2386 2334 2339 2333 22222454

2195 2316

5396 5487 5518 5665 5837 6024

6543

7102

0

1000

2000

3000

4000

5000

6000

7000

8000

1999 2000 2001 2002 2003 2004 2005 2006

Year

Num

ber

Deceased donors

Deceased donor transplantsActive transplant list



Deceased donation, 2006

• 1994: Organ Donor Register

– Opt-in legislation

• 2001: Non heartbeating organ donation programmes

– Controlled

– Uncontrolled

• 2003

– Potential Donor Audit

– Donor liaison clinicians and in house coordinators

A series of ineffective interventions

745 777 778 770 709 814 753 779

2386 2334 2339 2333 22222454

2195 2316

5396 5487 5518 5665 5837 6024

6543

7102

0

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2000

3000

4000

5000

6000

7000

8000

1999 2000 2001 2002 2003 2004 2005 2006

Year

Num

ber

Deceased donorsDeceased donor transplantsActive transplant list



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fam

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UK Italy Romania RepIreland

Croatia Spain Poland Slovakia Hungary CzechRepublic


• Diagnosis of brain-stem death

• Identification and referral of

potential donors

• Donation after circulatory

death

• Family consent / authorisation

ratesThe UK: an unenviable leader in family refusals



Counting the cost…………..

• 1000 deaths annually on active transplant waiting list

• Restricted access to many waiting lists

• Only 25% of dialysis patients considered for transplantation

• Active promotion of living donation programmes

– More living donors than deceased donors

• 50% mortality on lung transplant waiting lists Mary Hand, cystic fibrosis

sufferer. Died aged 22




How could the rates of organ donation be so much higher in so many other countries……….?

0 5 10 15 20 25 30 35

donors pmp

Greece

Switzerland

DenmarkSlovak Republic

The Netherlands

CroatiaUK

Poland

Sweden

GermanyNorwayHungary

Latvia

Portugal

Finland

ItalyFrance

USA

Spain



The UK Organ Donation Taskforce

To identify barriers to donation and transplantation and recommend solutions within existing operational and legal frameworks in England.

To identify barriers to any part of the transplant process and recommend ways to overcome them to support and improve transplant rates

Terms of Reference

http://www.odt.nhs.uk/donation/deceased-donation/organ-donation-taskforce/



Is there a Solution?

• Uncommon• Poorly understood• Disruptive

– ICU / Emergency Medicine– operating theatres

• Not ‘core business’– no local benefit

• Uncertain ethical and legal boundaries– extending the potential donor pool

What are the barriers in hospitals?

Why are the rates of deceased donation in the UK so low?0 5 10 15 20 25 30 35

donors pmp

Greece

Switzerland

DenmarkSlovak Republic

The Netherlands

CroatiaUK

Poland

Sweden

GermanyNorwayHungary

Latvia

Portugal

Finland

ItalyFrance

USA

Spain



Professional barriers to donation

• Admission to critical care for donation

• Continued ventilation in a patient close to brain-stem death

• Stabilisation for neurological determination of death

• Approaching all families

• Early involvement of trained requestors

• Donation after circulatory death

Making a donation happen?

Wrong place of deathWrong kind of death

Unknown wishes



The Taskforce Report

• 14 recommendations– Donor identification and referral

– Coordination

– Retrieval

• Accepted in full by all four health departments

• 50% increase in deceased donation by 2013

• Comprehensive UK-wide framework for donation and retrieval

The report of the UK Organ Donation Taskforce, 2008

http://www.odt.nhs.uk/donation/deceased-donation/organ-donation-taskforce/



Local Donation Champions

All parts of the NHS must embrace organ donation as a usual, not an unusual event. Local policies, constructed around national guidelines, should be put in place. Discussions about donation should be part of all end-of-life care when appropriate. Each Trust should have an identified clinical donation champion and a Trust donation committee to help achieve this.

Donation should not be viewed as something to be inflicted upon patients and families after end of life care.

Rather, it should be considered to be a fundamental component of end of life care and not denied to patients because they are dying in the wrong place or in the wrong way

Recommendation 4



The UK framework for donation

National ODOEmployment of coordinatorsCommissioning of retrievalAuditPublic engagementEducation and training

FundingResolution of ethical and legal obstaclesRegulationPublic recognition

Clinical leadsEmbedded coordinatorsDonation Committees

NHS Blood and Transplant

Departments of Health

More patients having their wishes to donate recognised, fulfilled and maximised

Acute hospitals



Professional Development

“The burden of responsibility to raise the question of donation …falls on medical professionals, few of whom ever receive any specific training for this difficult and delicate task. This is, by far, the target group on which the efforts to improve organ donation must be concentrated.”

Rafael MatesanzDirector

National Donation and Transplant Organisation

Spain

Recommendation 11

All clinical staff likely to be involved in the treatment of potential organ donors should receive mandatory training in the principles of donation.

There should also be regular update training



Framework of Practice

Urgent attention is required to resolve outstanding legal, ethical and professional issues in order to ensure that all clinicians are supported and are able to work within a clear and unambiguous framework of good practice. Additionally, an independent UK-wide Donation Ethics Group should be established.

Recommendation 3

Wrong place of deathWrong kind of death

Unknown wishes



Implementation of the UK frameworkA managed programme of change

2 31

Develop and publish the ODTF recommendations

INFORM

64 5

Engage, develop and empower local donation committees

INVOLVE

7 8

Make donation usual in all hospitals

INSPIRE

Increase urgency

(professional and patient pressure)

Build the guiding team

(Organ Donation

Taskforce)

Get the right vision

(Taskforce Report)

Communicate for buy-in

(Regional Roadshows)

Empower action

(Professional Development Programme)

Create short term

wins

(DCD)

Don’t let up

(Regional Donation

Collaboratives)

Make it stick

(Business relationship with NHS

BT)



Phase 1: inform

Organ Donation Roadshows



Phase 1: inform

An undeniable case for change0 5 10 15 20 25 30 35

donors pmp

Greece

Switzerland

Denmark

Slovak Republic

The Netherlands

CroatiaUK

Poland

Sweden

Germany

NorwayHungary

Latvia

Portugal

Finland

Italy

FranceUSA

Spain



Phase 2: involve

Sharing the vision



The six big wins

• Consent / authorisation

• Brain-stem death testing

• Donation after circulatory death

• Donation from Emergency Medicine

• Donor identification and referral

• Donor optimisation

consent / authorisation

diagnosis of brain stem

deathNHBD

Donation in emergency medicine

Minimum notification

criteria

Donor Management

consent / authorisation


deathNHBDconsent /

authorisation consent /

authorisation


death


deathNHBDNHBD



criteria

Donor Management




criteria


criteria

Donor Management

Donor Management

Leadership

Change management

Communication skills



Overcoming the obstaclesDonation after Circulatory Death

http://www.odt.nhs.uk/donation/deceased-donation/



http://www.odt.nhs.uk/donation/deceased-donation/

Overcoming the obstaclesDonor identification and family approach



Building on existing guidance

13. If an adult patient lacks capacity to decide, the decisions you or others make on the patient’s behalf must be based on whether treatment would be of overall benefit to the patient ….. and which option (including the option not to treat) would be least restrictive of the patient’s future choices. ………you must consult with those close to the patient who lacks capacity, to help you reach a view.

UK General Medical Council guidance on end of life care , 2010



Building on existing guidance

81. If a patient is close to death and their views cannot be determined, you should be prepared to explore with those close to them whether they had expressed any views about organ or tissue donation, if donation is likely to be a possibility.

82.You should follow any national procedures for identifying potential organ donors and, in appropriate cases, for notifying the local transplant coordinator.

UK General Medical Council guidance on end of life care , 2010



37 4261 73 87

127159

200

288

335373

437

507

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2012-2013

year

num

ber D

CD

don

ors

Phase 2: involve

Create early gainsA ten fold increase in

MC III DCD over a decade



Deceased organ donors in the UK 2007-12

609 611 624 637 652 705

200288

335 373436

507

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1400

2007-8 2008-9 2009-10 2010-11 2012-13 2012-13

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DBD DCD

809

1212



Deceased organ donors in the UK 2007-12

609 611 624 637 652 705

200288

335 373436

507

0

200

400

600

800

1000

1200

1400

2007-8 2008-9 2009-10 2010-11 2012-13 2012-13

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DBD DCD

809

1212

49.7%



Deceased donation and kidney transplantation, 2007-12

1412

15621615

1698

1796

2001

0

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600

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1400

2007-2008 2008-2009 2009-2010 2010-2011 2011-2012 2012-2013

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dono

rs

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2200

DD

kid

ney

trans

plan

ts

DCDDBDkidney transplants



770 751 764 793 809 899 959 1010 1088 1212

2396 2241 21962385 2381

2552 2645 26952912

3112

763678007997

7219

6698

6142

5673

76557877

7288

0

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2003-04 2004-05 2005-06 2006-07 2007-08 2008-09 2009-10 2010-11 2011-12 2012-13

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DonorsTransplantsTransplant list

Deceased donors, transplants and the transplant waiting list 2007-12



Deceased donation and heart transplantation in the UK 2007-12

0

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2007-2008 2008-2009 2009-2010 2010-2011 2011-2012 2012-2013

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dono

rs

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hear

t tra

nspl

ants

DCDDBDheart transplants




0 5 10 15 20 25 30 35

donors pmp

GreeceSweden

Switzerland

DenmarkPoland

The NetherlandsLatvia

Germany

HungarySlovakiaFinland

UKNorway

ItalyFrance

USAPortugalCroatia

Spain

19.4

UK 2012: much improved…………. but could do better still



Phase 3: inspire

Doing things differently

• Donor identification and referral

• Diagnosis of brain-stem death

• Donor optimisation

• Family refusal



Brain-stem death testing

• 427 patients not tested (25.7%)

• 220 additional brain-stem dead donors

• 860 additional organ transplants

Potential Donor Audit, 2011-12



Organ utilisation in DBD donors

8882

26

1821

0

10

20

30

40

50

60

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90

100

Organdonors

Meet specificorgan criteria

Consent fororgan and

organ offered

Organaccepted and

retrieved

Organtransplanted

% p

ossi

ble

orga

ns

KidneyLiverPancreasHeartsLungs



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Croatia Spain Poland Slovakia Hungary CzechRepublic

Family refusal rates

The UK will never have a world class donation and transplantation service when 40% of families say ‘no’.



These issues should not be particularly difficult, or even that costly to resolve. Overcoming them will require leadership, boldness and willingness to change established practice. The prize for doing so is considerable.Mary Hand, cystic fibrosis

sufferer. Died aged 22 Organs for TransplantsA Report from the Organ Donation

Taskforce (2008)


organ donation in the uk five years on from the organ donation taskforce

Documents

future organ donation

futuredeceased donation

futureorgan donation

rates of organ donation

south walesorgan donation

landscape of deceased

organ donor registeropt

future chart34331