Organ Donation Past, Present and Future Donor Family Experience Pat Collins and Paula Aubrey.

Organ Donation Past, Present and Future

Donor Family Experience

Pat Collins and Paula Aubrey

Another family’s story…

3Organ Donation Past, Present and Future

“In 2011, my 16 year-old son Aaron was involved in a road crash, where he sustained fatal head injuries. He was hit at just after 5 pm and his life support machine was turned off at just after midnight.

Aaron was a kind and loving child, who had often spoken about organ donation. Obviously we never expected in a million years to be faced with the situation that occurred on that night, but one thing that sticks out in my mind is that we were never asked about donation.”

Another family’s story…


“I raise this issue as a pointer to the service for the future. I utterly regret that I was not given the chance to “share” Aaron with someone else, to give life from his death.

At the time, I needed someone to raise the issue.

I simply didn’t have the fortitude to do so and in the context of difficult decisions that night, the decision to donate organs would have been the easiest of all.”


Family Approach and Consent

Dr Phil HopkinsDr Gus Vincent4th June 2013

5

LONDON

Session Objectives• Understanding the importance of consent in overall supply of

organs for transplantation.

• Understanding why families say no.

• Why using a 1st person consent model is often unhelpful.

• A 3 stage approach – how best to inform and support families through their decision.

• Understanding the role of the SNOD in the family approach.



Regional Data

7

Phil Hopkins Clinical Lead Organ Donation

Kings College Hospital, London

LONDON


Regional Data

8

Phil HopkinsClinical Lead Organ Donation

Kings College Hospital, London

LONDON

LONDON

% o

f p

os

sib

le d

on

ors

0

10

20

30

40

50

60

70

80

90

100

Possibledonors*

Neurologicaldeath testsperformed(DBD only)

Neurologicaldeath

confirmed(DBD only)

Contraindications Familyapproach

Consent/authorisation

Donation

* The annotated figures represent the percentage of remaining patients lost at each stage, not the percentage of all possible donors*

* DCD - Possible donors not confirmed dead by neurological criteria where imminent death anticipated and treatment withdrawn* DBD - Possible donors meeting criteria for neurological testing*

DBD, 87 donated (35% of possible donors)DCD, 50 donated (10% of possible donors, 18% of those not contraindicated)

18% 1%5%

12%

42%12%

46%

36%

50%

46%


Where are potential donors in London lost?

9

Conclusion: What’s happening with DBD?

12th

7th4th

12th

64% 54%

=

Consent

+58%

+ +50%56%

(58)(68) (89) (78)(56)Scotland South

WestEastern London UK

DBD DCD

LONDON

+ +Doctor DoctorSNOD SNOD

-------- National rate

83

92

58

91

75

88

75

92

85

62

52

75

% a

pp

roac

hes

wh

ere

SN

-OD

invo

lved

0

20

40

60

80

100

Team

Easte

rn

London

Mid

lands

North

Wes

t

Norther

n

Norther

n

Irela

nd

Scotla

nd

South

Centra

lSouth

East

South

Wal

es South

Wes

t

York

shire

1 April 2012 to 31 March 2013, data as at 4 April 2013


LONDON+Doctor SNODDBD

-------- National rate

76

85

53

80

58

80

53

74

83

69

37

65

% a

pp

roac

he

s w

her

e S

N-O

D i

nvo

lve

d

0

20

40

60

80

100

Team

Easte

rn

London

Mid

lands

North

Wes

t

Norther

n

Norther

n

Irela

nd

Scotla

nd

South

Centra

lSouth

East

South

Wal

es South

Wes

t

Yorksh

ire



LONDON+Doctor SNODDCD

DBD consent/authorisation rate by ethnic group

ODS team

Family approached Consent/ authorisation rate* Family approached Consent/ authorisation rate*

Eastern 99 75 13 46

London 119 68 50 36

Midlands 104 72 14 29

North West 98 76 6 -

Northern 71 76 3 -

Northern Ireland 45 62 3 -

Scotland 70 80 1 -

South Central 70 86 8 -

South East 90 67 15 47

South Wales 46 65 2 -

South West 53 70 - -

Yorkshire 77 70 6 -

Total 942 73 121 36

White patients BAME patients

* Consent/authorisation rates are not shown where the number of families approached is less than 10



DCD consent/authorisation rate by ethnic group

ODS team

Family approached Consent/ authorisation rate* Family approached Consent/ authorisation rate*

Eastern 178 57 6 -

London 134 57 44 32

Midlands 202 51 17 12

North West 171 53 10 20

Northern 90 68 2 -

Northern Ireland 44 45 - -

Scotland 129 53 2 -

South Central 128 55 8 -

South East 134 54 7 -

South Wales 68 44 2 -

South West 148 62 4 -

Yorkshire 151 47 8 -

Total 1577 54 110 30

White patients BAME patients

* Consent/authorisation rates are not shown where the number of families approached is less than 10




Best Practice in Family Approach and Consent

15

Dr Angus VincentNorthern Regional CLOD

LONDON

Where donation potential is lost.

• We’ve known for years that low consent rates easily accounts for the biggest loss of potentially transplantable organs in the UK.

• No other intervention could increase the availability of organs for transplantation to the extent that an increase in consent to 80% would.


PDA 2011/12


2011/12 data DBD DCD

Approached 1090 1592

Consent given 694 793

% 64% 50%

DBD DCD

Consent if on ODR 93% 79%

Consent if not on ODR 48% 37%

DBD DCD

Consent - SNOD involved 68% 64%

Consent - SNOD not involved

53% 30%

Combined

55% consent

45% family refusal


Poor DCD consent rates…………

Source: Transplant activity in the UK, 2011-2012, NHS Blood and Transplant

716697

664637 634

609 611 624 637 652

61 73 87127

159200

288

335373

436397

472 485

599

702

858

961

1062 1046 1055

0

100

200

300

400

500

600

700

800

900

1000

1100

2002-2003 2003-2004 2004-2005 2005-2006 2006-2007 2007-2008 2008-2009 2009-2010 2010-2011 2011-2012

Year

Nu

mb

er

DBD donors

DCD donors

Living donors

Number of deceased and living donors in the UK, 1 April 2002 - 31 March 2012


Bottom line – UK Family Refusal Rate is 45%

One of the highest family refusal rates in the world


Family refusal rates, 2010

Note – limited international data available on family refusal rates


BBC DoNation Survey

August, 2005


Why do families say no?

Common themes are found

Some amenable to intervention at time of request – so called ‘modifiable factors’

Less well understood grief reactions are important

• Sacrifice

• Guardianship of the body

• Relationship between body and identity


PDA 11/12 – Top 3 Refusal Reasons


Consent and the Law

• Deceased Donors Human Tissue Act (2004)

– ODR or other applicable advanced directive– Nominated representative– Prior witnessed statement– Consent (or refusal) from an individual in a qualifying

relationship

• Living Donors (potential DCD) Mental Capacity Act (2005)


First Person Consent• Essentially

– ODR– Family discussion

• All of our national campaigns etc are aimed at this intervention

• Not unanimous that this is the right approach


Problems with first person consent

• “He said he didn’t want to be a donor”

• “No we can’t be sure what he would have wanted”– Possibly up to 40% of refusals

• The ODR is not informed consent

• The process of being pressured to choose in life may lead to uniformed negative decisions too.

• Registrants on the ODR are not representative of the donor pool ( 3 - 4 x more likely to not be on ODR).


Alternative to first person emphasis?

Focus instead on supporting the family and their needs.• Compassion and care.

• Understanding and acceptance.

• The right information to make the right decision for them.


A synthesis of the available evidence surrounding the family approach and consent practice into a clinical guideline.

Clear guidance on the conduct and content of the consent process

Represents principles of good family care in any setting

Sensitive to family needsTime and privacyInformation in an understandable formatCare and empathy


Evidence

• Very large body

• Qualitative, observational

• Audit

• Service Development


What does the evidence/guideline say about consent?

Emphasises– Prior planning

– A team approach – involvement of the SNOD and the importance of the presence of a trained individual

– Ensuring understanding of death or its inevitability prior to discussion surrounding donation

– Provision of the right information in the right way



Best Practice Guidance on the Family Approach

Dr Angus Vincent

32

Short(ish), summary guidance.

Endorsed by the professional bodies.

ICS – (Kevin Gunning)

FICM – (Julian Bion)

Copy to every UK consultant

(…….but we’re good at difficult conversations aren’t we?)


Approaching the families of potential organ donors

The premise of this guideline is simple…..

By looking after and supporting our families and providing them with the information they need to make the right decision for them, more of them will say “Yes” to organ donation.


Involving the specialist nurse-organ donation

Training and core day to day businessTiming and transitionInformationLanguageModifiable factorsExploring ‘no’Family Support

Reluctance amongst some consultants

Professional autonomy

How to do introduce

How to run the conversation


Introducing the SN-OD

How best to do this?



PlanningIntroducing the specialist nurse

Clip1 introducing SNOD.mp4

Embed Clip 1

Or play from Video: Title 2, Ch 1 – 11:40 – 12:00

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

Three discrete stages

Family care and support

The right information at the right time in the right way

Allowing time

No aspect of pressure or coercion

In absence of prior consent, we must emphasise to the family that the decision is now for them.


Planning



PlanningPlanning

Clip 2 Good planning.mp4

Embed Clip 2

Or play from video Title 2, Ch 1 – 04:03 – 07:13


Confirming understanding and acceptance

Donation should not be discussed until the family has accepted the reality of the clinical situation

DBD

Very strong evidence that failure to comprehend brain death is associated with a ‘no’.

Take time.

Emphasise death (not its inevitability).

Scans and diagrams.

DCD

Conversation regarding withdrawal of life sustaining treatments.

A process but with an end point.

More familiar territory.

Help understanding that death is inevitable.



Breaking bad news?

Clip 3 Breaking Bad news poor.mp4

Embed Clip 3

Or play from video Title 2, Ch1 – 08:20 – 10:07


Transition/ ‘Decoupling’

• At what point to move onto donation?

• Same conversation or separate?

• Each family is different.

• Appreciating when a family have accepted and understood is usually not too hard.



Ensuring understanding

Clip 4 Breaking bad news good.mp4

Embed Clip 4

Or play from video Title 2, Ch 1 13:20 – 15:40


Discussing Donation– usually led by SN-OD

• Give information first, then seek an answer

• Specific regarding the benefits, using positive language

• Avoiding apologetic and negative statements


Discussing Donation – not on ODR

• Open, exploratory questions

• Empower the family – it is their decision (legally)

• De-emphasise 1st person aspect



Raising donation – not on ODR

Clip 5 Transition to SNOD not on ODR.mp4

Embed Clip 5

Or play from video Title 2, Ch 1 17:58 – 19:38


Seeking consent – on ODR

• Consent has been given by the patient.

• A presumptive, facilitating tone.

Organ Donation Past, Present and Future 48


Registered on ODR

Clip 6 Transition to SNOD on ODR.mp4

Embed Clip 6

Or play from video Title 8 Ch 1 05:50 – 07:21


Key Principles

Plan

Utilise the SN-OD.

Take time to ensure full understanding of the clinical reality.

Give information positively


Approaching Families – The Movie


Summary

• Our huge family refusal rate is the main reason patients don’t get the transplant they need.

• Evidence would strongly suggest that many refusals are as a result of us failing to get key aspects of the approach right.

• A simple 3 stage strategy can ensure our families are cared for and informed. We believe many more will say “Yes” to donation as a result.


Organ Donation Past, Present and Future Donor Family Experience Pat Collins and Paula Aubrey.

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