Approaching the families of potential organ donors

Organ Donation Past, Present and Future

Approaching the families of potential organ donors

Dr Paul Murphy

National Clinical Lead for Organ Donation

1


• Background information

– Potential Donor Audit data

– Legal framework for consent

• NICE Short Clinical Guideline

– Family approach

• Implementation

– NHSBT documents

– DVD

Outline

Consent / authorisation

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


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.



Potential Donor Audit 2011/12

If the UK had a 20% family

refusal rate

• Additional 120 DBD donors

• Additional 280 DCD donors

• Additional 1200 transplants

DBD



0

5

10

15

20

25

30

35

40

45

fam

ily r

efu

sa

l ra

te

UK Italy Romania RepIreland

Croatia Spain Poland Slovakia Hungary CzechRepublic

Family refusal rates



Consent / authorisation rates, 2011-2

64(54 – 78)% 52 (42 - 67)%UK average (range)



Legal framework for consent / authorisation

• Human Tissue Act 2004 and

Human Tissue (Scotland) Act

2006

• Hard opt-in

• Role of family

– Provide evidence on views of

the individual

– Assume responsibility for

decision making when these

views are not known



0

10

20

30

40

50

60

70

80

90

100

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

year

co

ns

en

t / a

uth

ori

sa

tio

n r

ate

(%

)

0

2

4

6

8

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12

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20

reg

istr

an

ts (

mill

ion

s)

ODR DBD DCD

58.2%

67.7%

Impact of the UK Organ Donor Register?



Public support?

BBC DoNation Survey August, 2005



Why do families say ‘no’?



The family approach: international evidence

Planning

Confirming understanding and acceptance of loss

Discussing donation

• Preparation and time

• Acceptance of loss

– Clarity of language

– Understanding concept of brain death

• Positive impact of a competent and experienced requestor

• Adverse impact of certain kinds of language

– Apologetic

– Negative

Modifiable elements of the family approach



Consent / authorisation DBD donation

Consent rate when SNOD involved

Consent rate when SNOD not involved



Consent rate when SNOD involved

Consent rate when SNOD not involved

Consent / authorisation DCD donation



NICE Guidance

1.1.11 A multidisciplinary team (MDT) should be responsible for planning the approach and discussing organ donation with those close to the patient.

1.1.12 The MDT should include:

– the medical and nursing staff involved in the care of the patient, led throughout the process by an identifiable consultant

– the specialist nurse for organ donation

– local faith representative(s) where relevant.



NICE Guidance

1.1.14 The [multi-disciplinary team] involved in the initial approach should have the necessary skills and knowledge to provide to those close to the patient appropriate support and accurate information about organ donation.

1.1.30 The [multidisciplinary team] involved in the identification, referral to specialist nurse for organ donation, and consent should have the specialist skills and competencies necessary to deliver the recommended process for organ donation outlined in this guideline.



Guidance from the GMC

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



Involvement of SNOD in approach to families



UK Donation Ethics Committee

Contact between the clinical team treating the potential donor and the SN-OD before the decision has been made to withdraw life-sustaining treatment is ethically acceptable. Advantages include identifying patients who are not suitable donors, and avoiding distressing delays to the family if the SN-OD has to travel some distance to get to the unit

Supporting the family through the discussion about organ donation requires a team approach. The SN-OD has the detailed knowledge and expertise to lead the process, but needs to be supported by other members of the clinical team.



The family approach: 3 key stages

Planning


Discussing donation

As a standard of best practice, the family approach should be a collaborative effort between senior clinical staff and the SN-OD



Planning the family approach

PlanningEstablish the team:

• Consultant

• SN-OD

• Bedside nurse

Meet in private

Clarify clinical situation

Seek evidence of prior consent

The planning phase is possibly the most important element of the approach. SN-ODs are very well placed to reinforce the key elements of best practice.




Planning Key family members by name

Key family issues

Agree timing and setting,

ensuring these are appropriate

to family needs

Involve others as required, eg

faith leaders

The specialist nurse can help to identify families who have yet to understand and / or accept the inevitability of their loss.




Planning Agree a process of approach and who will be involved

• how will team members be introduced

• who will lead the initial discussion (breaking bad news)

• how will the transition to donation be made

Although clinical circumstances vary, as a standard SN-ODs should be involved in planning the family approach and subsequent contact with the family



PlanningPlanning

Clip 2 Good planning.mov

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Confirming understanding

Planning


• introducing the SN-OD

• assessing understanding

− brain-stem death

• de-coupling

It is vital that staff explicitly consider whether a family have understood and accepted their loss, and are thereby ready to make the transition to donation.



PlanningIntroducing the specialist nurse

Clip1 introducing SNOD.mov

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

Clip 1 mp4https://www.dropbox.com/s/b9e7wxxz6mfp9lb/Clip%201%20Breaking%20bad%20news%20good%20mp4.mp4

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Introducing the SN-OD

Planning


There is no evidence that families recognise a conflict when meeting the SN-OD at this time.

“Mrs Smith, this is Louise Green,

she is a specialist nurse that we

work with on the unit and who helps

support families at this time.”



Confirming understanding

Planning


• introducing the SN-OD

• assessing understanding

− brain-stem death

• de-coupling

It is vital that staff explicitly consider whether a family have understood and accepted their loss, and are thereby ready to make the transition to donation.



Breaking bad news?

Clip 3 Breaking Bad news poor.mov

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Ensuring understanding

Clip 4 Breaking bad news good.mov

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

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Assessing understanding

Planning


It is often useful to ask a family lead to explain their current understanding of a loved one’s condition.

“I know you have been through a great

deal in the last few days, but can you

briefly tell me what your understanding

of what the situation is and what has

happened to John up until now?”



De-coupling

Planning


Families are hardly likely to consider a post-mortem intervention if they have yet to accept the death of a loved one.

“I can see that you are finding this

really difficult to come to terms with

and I am sure you need some time on

your own to talk about I’ve just told

you. So I will come back a bit later.”



Discussing donation

Planning


Discussing donation

• making the transition

• the implications of prior first

person consent

• careful use of language

− positive vs negative

− open vs closed questions

− anticipation of common

concerns



Raising donation – not on ODR

Clip 5 Transition to SNOD not on ODR.mov

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

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Making the transition

Planning


Discussing donation

Who mentions ‘donation’ for the first time is less important than when and how it is introduced

“I would like to talk to you now about

something you might not be expecting,

and that is organ donation. Tonight,

John has the opportunity to save and

transform the lives of several people.”



Discussing donation

Planning


Discussing donation

Who mentions ‘donation’ for the first time is less important than when and how it is introduced

“Louise here has expertise in this

area, and I am now going to hand

over to her.”



Patient’s wishes are not known

Planning


Discussing donation

The law passes authority for decision making onto the family when the patient’s wishes are unknown

“Mrs Smith, do you know whether your husband wanted to be an organ donor

when he died?”

“Mrs Smith, tell me what your husband wanted to happen when he died.”



Patient’s wishes are not known

Planning


Discussing donation

The law passes authority for decision making onto the family when the patient’s wishes are unknown

“Mrs Smith, do you know whether your husband wanted to be an organ donor

when he died?”

“Mrs Smith, tell me what your husband wanted to happen when he died.”

X



Consent and the Organ Donor Register

Consent rate (%)

DBD on ODR 92

DBD not on ODR 56

All DBD 65

DCD on ODR 76

DCD not on ODR 44

All DCD 51

DBD and DCD on ODR 84

DBD and DCD not on ODR 49

All deceased donors 57



Registered on ODR

Clip 6 Transition to SNOD on ODR.mov

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

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Prior first person consent

Planning


Discussing donation

If a patient is on the Organ Donor Register, then consent has already been given.

“Mrs Smith, you may not be aware of

this but your husband is on the

National Organ Donor Register.

When he registered with his new GP

six years ago he also decided that he

wanted be an organ donor after his

death.”



Prior first person consent

Planning


Discussing donation

There is no provision in law for families to overturn the wishes of the patient.

“What this means is that John has

given his consent for donation to take

place, and what we would like to do

now is explain how we can respect his

decision.”



Summary

• Identify and refer as soon as possible

• Explicitly consider the three stages of the family approach

• Do not raise donation until a family have understood and accepted their loss

• Present donation in a positive way

• Act upon prior first person consent

• Avoid exclusive focus on the wishes of the individual


Approaching the families of potential organ donors

Documents

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