Organ donation challenges in the UK

Paul Murphy

National Clinical Lead for Organ Donation

United Kingdom

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2007-8 2008-9 2009-10 2010-11 2011-12 2012-13 2013-14 2014-15 2015-16 2016-17

Donation after Brain-stem Death

Donation after Circulatory Death

UK Deceased Organ Donation

75% more donors

56% more transplants

Organ donation challengesDeceased donors pmp, 2015

Who Outcome measure

Society and individuals 80% consent / authorisation

NHS hospitals and staff

(donation)

26 deceased donors per million

population

NHS hospitals and staff

(transplantation)

5% improvement in organ

utilisation

NHSBT and

Commissioners

74 deceased donor transplants

per million population

Current UK strategy

Taking Organ Transplantation to 2020

‘Should any of these groups fail to respond, the aims of this strategy will not be fully achieved.’

Who Outcome measure Progress

Society and individuals 80% consent / authorisation 63.0%

NHS hospitals and staff

(donation)

26 deceased donors per million

population

21.8 pmp

NHS hospitals and staff

(transplantation)

5% improvement in organ

utilisation

-0.4%

NHSBT and

Commissioners

74 deceased donor transplants

per million population

57.3 pmp

Current UK strategy

Taking Organ Transplantation to 2020

International refusal rates

In 2016/17, 1172 / 3144

families said no.

A family refusal rate of

20% → 343 additional

donors

Factors associated with consent in the UK

Impact of patient’s known wishes

Odds ratio

0.1 1 10 100

NHS organ donor register

NHS organ donor registerImpact on family consent

NHS organ donor registerImpact on family consent

Achieving a

consent rate of

80% through the

ODR alone

would require

over 84% of the

population to be

on it.

Impact of a trained requestor

Odds ratio

0.1 1 10 100

Effect of trained requestor in DBD

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

guidance/consent-and-authorisation/#nhsbtbestpractice

Countdown to organ donationchanges in Wales:

Human Transplantation (Wales)

Act 2013

UK consent rates by countryApril 2014 – Jun 2017

England (opt-in)

Population 55 million

Wales (opt-out)

Population 3 million

Impact of deemed consent in WalesSequential analysis in DBD donors

Impact of deemed consent in WalesSequential analysis in DCD donors

Are we using all the organs we should be?

Are we using all the organs we should be?

Strategic objective: 35%

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rheart transplants / DBD donor, 2013

Are we using all the organs we should be?

Expanding the donor pool

Ethicus study

End of life Categories (% patients)

Unsuccessful

CPR

Brain

death

Treatment

limitation

Treatment

withdrawal

Active

shortening of

dying process

Northern

Denmark, Finland, Ireland,

Netherlands, Sweden, UK

10.2 3.2 38.2 47.4 0.9

Central

Austria, Belgium, Czechia,

Germany, Switzerland

17.9 7.6 34.1 33.8 6.5

Southern

Greece, Israel, Italy, Portugal,

Spain, Turkey

30.1 12.4 39.6 17.9 0.1

Range between countries 5 - 48 0 - 15 16 - 70 5 - 69 0 - 19

End-of-Life Practices in European Intensive Care Units

Sprung et al, 2003. JAMA 290: 790-797.

Ethicus study

End of life Categories (% patients)

Unsuccessful

CPR

Brain

death

Treatment

limitation

Treatment

withdrawal

Active

shortening of

dying process

Northern

Denmark, Finland, Ireland,

Netherlands, Sweden, UK

10.2 3.2 38.2 47.4 0.9

Central

Austria, Belgium, Czechia,

Germany, Switzerland

17.9 7.6 34.1 33.8 6.5

Southern

Greece, Israel, Italy, Portugal,

Spain, Turkey

30.1 12.4 39.6 17.9 0.1

Range between countries 5 - 48 0 - 15 16 - 70 5 - 69 0 - 19

End-of-Life Practices in European Intensive Care Units

Sprung et al, 2003. JAMA 290: 790-797.

Expanding the donor pool

Does variation in the management

of patients with catastrophic brain

injury explain these differences?

Expanding the donor poolHospital Episode Statistics

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N. of deaths from identified conditions <80 (excl. A&E), Total (HES)

All in-patient deaths

Deaths from acute neurological conditions in patients < 80years,

(excluding ED)

Expanding the donor poolHospital Episode Statistics

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800

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Deaths on ICU

All in-patient deaths

Deaths from acute neurological conditions in patients < 80years,

(excluding ED)

27

Inpatient vs. ICU deaths for main diagnostics (<85)

▪ Two diagnostics have a larger proportion of deaths while in critical care than expected based on proportion of deaths: anoxic brain damage and subarachnoid haemorrhage

28

Inpatient vs. ICU deaths for main diagnostics (<85)

▪ Those significantly under represented include cerebral infarction and intracranial haemorrhage

29

Effect of age on location of death

33% 21% 15% 11% 7% 3%

Xx% % of deaths in critical care

The proportion of deaths from the 26 identified IDC-10 codes that occurred in Critical Care, according to HES data is small (13% on average) and varies by age group (33% for 0-59)

Deceased donors in the UK12 month rolling totals

1. We recommend determining prognosis from repeated

examinations over time to establish greater confidence

and accuracy.

2. We recommend applying these guidelines in the early

stages of DBI treatment in order to maintain physiologic

stability, even when early limitation of aggressive care is

being considered. Such early implementation prevents

unwarranted deterioration and allows sufficient opportunity

for prognostic evaluation, care planning, and consideration

of organ donation

3. We recommend using a 72-h observation period to

determine clinical response and delaying decisions

regarding withdrawal of life-sustaining treatment in the

interim.

US Neurocritical Care Society

Guidance

Organ Donation Challenges in the UKSummary

• Conversion

– Family refusal

• More effective requesting

• Legislative reform?

– Organ utilisation

• Improved donor assessment / optimisation

• More consistent decision making

• Novel technologies for DCD

• Expansion of the donor pool

– More an issue for Intensive Care Medicine

International Donation RatesRelationship with legal framework for consent

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5 Opt – in

Opt-out

Opt-out in the UK

Population Opt-in (%) Opt-out (%)

England 55,026,327 19,469,284 (35) 31,086 (0.06)

Northern Ireland 1,851,621 742,939 (40) 223 (0.01)

Scotland 5,373,000 2,404,631 (45) 2,028 (0.04)

Wales 3,099,086 1,178,651 (38) 175,615 (6)

Total 65,350,034 23,795,505 (36) 208,952 (0.03)

Source: NHSBT, as of 25th May 2017

Increasing Donor NumbersDonor identification and referral

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Re

ferr

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te (

%)

DBD DCD

There were 893 missed

DCD referrals in the

UK in 2016/17

Expanding the donor pool

• Different standards for neurological

determination of death (worrying)

• Lower incidence of brain injury

(complacent)

• Better outcomes from treatment

(arrogant)

• Different approach to the end of life

care in patients with catastrophic

brain injury (intriguing)

Does treatment limitation or

withdrawal account for these

differences?