Donor Family Experience

Organ Donation Past, Present and Future

Donor Family Experience

Pauline Holmes &

Trish Collins SOUTH CENTRAL


Can insert pictures or name of donor family being interviewed here – or delete slide

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 Mark HaslamDr Angus Vincent11th June 2013

5

SOUTH CENTRAL

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.


SOUTH CENTRAL


Regional Data

7

Dr Mark HaslamDeputy Clinical Lead Organ Donation

Cheltenham Hospital

SOUTH CENTRAL

% o

f pos

sibl

e do

nors

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DCD - Possible donors not confirmed dead by neurological criteria where imminent death anticipated and treatment withdrawn* DBD - Possible donors meeting criteria for neurological testing*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, 59 donated (48% of possible donors)DCD, 32 donated (7% of possible donors, 12% of those not contraindicated)

24%5% 3%

7%

22% 5%45%

45%

49%

57%

Where are potential donors in the South Central team lost?


SOUTH CENTRAL

Conclusion: Can we equal our DBD results in DCD?

1st

5th9th

7th

33% 60%

=

Consent

82% 61%21%

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

WestEastern London UK

SOUTH CENTRAL

+ +

DBD DCD

Doctor DoctorSNOD SNOD

-------- National rate

83

92

58

91

75

88

75

92

85

62

52

75

% a

ppro

ache

s whe

re S

N-O

D in

volv

ed

0

20

40

60

80

100

Team

Easte

rn

London

MidlandsNorth

WestNorth

ern

Northern

Ireland

Scotla

ndSo

uth

Central So

uth

East So

uth

Wales South

WestYo

rkshire

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


SOUTH CENTRALTied

1st+Doctor SNODDBD

-------- National rate

76

85

53

80

58

80

53

74

83

69

37

65

% a

ppro

ache

s whe

re S

N-O

D in

volv

ed

0

20

40

60

80

100

Team

Easte

rn

London

MidlandsNorth

WestNorth

ern

Northern

Ireland

Scotla

ndSo

uth

Central

South

East So

uth

Wales South

West

Yorks

hire

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


SOUTH CENTRAL

6th

+Doctor SNODDCD


Best Practice in Family Approach and Consent

12

Dr Angus VincentNorthern Regional CLOD

SOUTH CENTRAL

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 DCDConsent 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%

Combined55% consent45% family refusal


Poor DCD consent rates…………

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

716 697664

637 634609 611 624 637 652

61 73 87127

159200

288335

373

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 2011-2012Year

Num

ber

DBD donorsDCD donorsLiving 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 way28Organ Donation Past, Present and Future


Best Practice Guidance on the Family Approach

Dr Angus Vincent

29

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.mov

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.mov

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.mov

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.mov

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 45


Registered on ODR

Clip 6 Transition to SNOD on ODR.mov

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.


Donor Family Experience

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Transcript of Donor Family Experience