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Donor Family Experience. Dawn McKeen & Jacki Newby. NORTHERN. Another family’s story…. 3. Organ Donation Past, Present and Future .

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donor family experience

Donor Family Experience

Dawn McKeen

&

Jacki Newby

NORTHERN

another family s story
Another family’s story…

3

Organ 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 story1
Another family’s story…

4

Organ Donation Past, Present and Future

“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

Family Approach and Consent

Dr Jon Walton, CLOD, Freeman Hospital

Dr Angus Vincent

NORTHERN

5

session objectives
Session Objectives

NORTHERN

6

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.

Organ Donation Past, Present and Future

regional data

Regional Data

Dr Jon Walton

Freeman Hospital

NORTHERN

7

where are potential donors in the northern team lost
Where are potential donors in the Northern team lost?

NORTHERN

1st

3rd

Conclusion: The effect of the Northern Model.

1st

12th

8

Organ Donation Past, Present and Future

consent
Consent

NORTHERN

DBD

DCD

55%

68%

63%

75%

+

+

=

SNOD

Doctor

SNOD

Doctor

(68)

(89)

(56)

(78)

Eastern

Scotland

London

South West

slide10

100

92

92

91

88

85

80

83

75

75

75

60

62

58

52

40

% approaches where SN-OD involved

20

0

North

South

South

South

South

London

Eastern

Midlands

Northern

Scotland

Yorkshire

Northern

East

West

West

Wales

Ireland

Central

Team

-------- National rate

+

SNOD

Doctor

DBD

NORTHERN

7th

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

10

Organ Donation Past, Present and Future

slide11

100

85

80

83

80

80

76

74

69

65

60

58

% approaches where SN-OD involved

53

53

40

37

20

0

North

South

South

South

South

London

Eastern

Northern

Scotland

Midlands

Northern

Yorkshire

East

West

West

Wales

Ireland

Central

Team

-------- National rate

+

SNOD

Doctor

DCD

NORTHERN

9th

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

11

Organ Donation Past, Present and Future

consent1
Consent

NORTHERN

DBD

DCD

55%

68%

63%

75%

67%

+

+

=

SNOD

Doctor

SNOD

Doctor

(58)

(68)

(89)

(56)

(78)

Eastern

Scotland

London

South West

UK

best practice in family approach and consent

Best Practice in Family Approach and Consent

Dr Angus Vincent

Northern Regional CLOD

NORTHERN

13

where donation potential is lost
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.

Organ Donation Past, Present and Future

pda 2011 12
PDA 2011/12

Organ Donation Past, Present and Future

2011 12 data
2011/12 data

Combined

55% consent

45% family refusal

Organ Donation Past, Present and Future

poor dcd consent rates
Poor DCD consent rates…………

Organ Donation Past, Present and Future

slide18

Bottom line – UK Family Refusal Rate is 45%

One of the highest family refusal rates in the world

Organ Donation Past, Present and Future

slide19

Family refusal rates, 2010

Note – limited international data available on family refusal rates

Organ Donation Past, Present and Future

bbc donation survey
BBC DoNation Survey

August, 2005

Organ Donation Past, Present and Future

why do families say no
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

Organ Donation Past, Present and Future

pda 11 12 top 3 refusal reasons
PDA 11/12 – Top 3 Refusal Reasons

Organ Donation Past, Present and Future

consent and the law
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)

Organ Donation Past, Present and Future

first person consent
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 

Organ Donation Past, Present and Future

problems with first person consent
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).

Organ Donation Past, Present and Future

alternative to first person emphasis
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.

Organ Donation Past, Present and Future

slide27

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 needs
    • Time and privacy
    • Information in an understandable format
    • Care and empathy

Organ Donation Past, Present and Future

evidence
Evidence
  • Very large body
  • Qualitative, observational
  • Audit
  • Service Development

Organ Donation Past, Present and Future

what does the evidence guideline say about consent
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

Organ Donation Past, Present and Future

slide31

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?)

Organ Donation Past, Present and Future

approaching the families of potential organ donors
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.

Organ Donation Past, Present and Future

involving the specialist nurse organ donation
Involving the specialist nurse-organ donation
  • Training and core day to day business
    • Timing and transition
    • Information
    • Language
    • Modifiable factors
    • Exploring ‘no’
  • Family Support

Reluctance amongst some consultants

Professional autonomy

How to do introduce

How to run the conversation

Organ Donation Past, Present and Future

introducing the sn od
Introducing the SN-OD

How best to do this?

Organ Donation Past, Present and Future

planning

Introducing the specialist nurse

Planning

Clip1 introducing SNOD.mov

Embed Clip 1

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

Organ Donation Past, Present and Future

three discrete stages
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.

Organ Donation Past, Present and Future

planning1
Planning

Organ Donation Past, Present and Future

planning2

Planning

Planning

Clip 2 Good planning.mov

Embed Clip 2

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

Organ Donation Past, Present and Future

confirming understanding and acceptance
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.

Organ Donation Past, Present and Future

slide40

Breaking bad news?

Clip 3 Breaking Bad news poor.mov

Embed Clip 3

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

Organ Donation Past, Present and Future

transition decoupling
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.

Organ Donation Past, Present and Future

slide42

Ensuring understanding

Clip 4 Breaking bad news good.mov

Embed Clip 4

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

Organ Donation Past, Present and Future

discussing donation usually led by sn od
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

Organ Donation Past, Present and Future

discussing donation not on odr
Discussing Donation – not on ODR
  • Open, exploratory questions
  • Empower the family – it is their decision (legally)
  • De-emphasise 1st person aspect

Organ Donation Past, Present and Future

slide45

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

Organ Donation Past, Present and Future

seeking consent on odr
Seeking consent – on ODR
  • Consent has been given by the patient.
  • A presumptive, facilitating tone.

Organ Donation Past, Present and Future

slide47

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

Organ Donation Past, Present and Future

slide48

Key Principles

Plan

Utilise the SN-OD.

Take time to ensure full understanding of the clinical reality.

Give information positively

Organ Donation Past, Present and Future

approaching families the movie
Approaching Families – The Movie

Organ Donation Past, Present and Future

summary
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