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Approaching the families of potential organ donors. Dr Paul Murphy National Clinical Lead for Organ Donation. Organ Donation Past, Present and Future. 1. Consent / authorisation. Outline. Background information Potential Donor Audit data Legal framework for consent - PowerPoint PPT Presentation
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Organ Donation Past, Present and Future
Approaching the families of potential organ donors
Dr Paul Murphy
National Clinical Lead for Organ Donation
1
Organ Donation Past, Present and Future
• Background information
– Potential Donor Audit data
– Legal framework for consent
• NICE Short Clinical Guideline
– Family approach
• Implementation
– NHSBT documents
– DVD
Outline
Consent / authorisation
Organ Donation Past, Present and Future
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
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
Organ Donation Past, Present and Future
0
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10
15
20
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fam
ily r
efu
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UK Italy Romania RepIreland
Croatia Spain Poland Slovakia Hungary CzechRepublic
Family refusal rates
Organ Donation Past, Present and Future
Consent / authorisation rates, 2011-2
64(54 – 78)% 52 (42 - 67)%UK average (range)
Organ Donation Past, Present and Future
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
Organ Donation Past, Present and Future
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
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tio
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ate
(%
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2
4
6
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10
12
14
16
18
20
reg
istr
an
ts (
mill
ion
s)
ODR DBD DCD
58.2%
67.7%
Impact of the UK Organ Donor Register?
Organ Donation Past, Present and Future
Public support?
BBC DoNation Survey August, 2005
Organ Donation Past, Present and Future
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
Organ Donation Past, Present and Future
Consent / authorisation DBD donation
Consent rate when SNOD involved
Consent rate when SNOD not involved
Organ Donation Past, Present and Future
Consent rate when SNOD involved
Consent rate when SNOD not involved
Consent / authorisation DCD donation
Organ Donation Past, Present and Future
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.
Organ Donation Past, Present and Future
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.
Organ Donation Past, Present and Future
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
Organ Donation Past, Present and Future
Involvement of SNOD in approach to families
Organ Donation Past, Present and Future
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.
Organ Donation Past, Present and Future
The family approach: 3 key stages
Planning
Confirming understanding and acceptance of loss
Discussing donation
As a standard of best practice, the family approach should be a collaborative effort between senior clinical staff and the SN-OD
Organ Donation Past, Present and Future
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.
Organ Donation Past, Present and Future
Planning the family approach
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.
Organ Donation Past, Present and Future
Planning the family approach
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
Organ Donation Past, Present and Future
PlanningPlanning
Clip 2 Good planning.mov
Embed Clip 2
Or play from video Title 2, Ch 1 – 04:03 – 07:13
Clip 2https://www.dropbox.com/s/30zyor97ybs66o9/Clip%202%20Good%20Planning.mp4
Clip 2https://www.dropbox.com/s/30zyor97ybs66o9/Clip%202%20Good%20Planning.mp4
Organ Donation Past, Present and Future
Confirming understanding
Planning
Confirming understanding and acceptance of loss
• 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.
Organ Donation Past, Present and Future
PlanningIntroducing the specialist nurse
Clip1 introducing SNOD.mov
Embed Clip 1
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
Clip 1 mp4https://www.dropbox.com/s/b9e7wxxz6mfp9lb/Clip%201%20Breaking%20bad%20news%20good%20mp4.mp4
Organ Donation Past, Present and Future
Introducing the SN-OD
Planning
Confirming understanding and acceptance of loss
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.”
Organ Donation Past, Present and Future
Confirming understanding
Planning
Confirming understanding and acceptance of loss
• 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.
Organ Donation Past, Present and Future
Breaking bad news?
Clip 3 Breaking Bad news poor.mov
Embed Clip 3
Or play from video Title 2, Ch1 – 08:20 – 10:07
Clip 3https://www.dropbox.com/s/d2wsmloalj9qk20/Clip%203%20Breaking%20Bad%20news%20poor.mp4
Clip 3https://www.dropbox.com/s/d2wsmloalj9qk20/Clip%203%20Breaking%20Bad%20news%20poor.mp4
Organ Donation Past, Present and Future
Ensuring understanding
Clip 4 Breaking bad news good.mov
Embed Clip 4
Or play from video Title 2, Ch 1 13:20 – 15:40
Clip 4https://www.dropbox.com/s/x8ydfytmkqz10v7/Clip%204%20Breaking%20bad%20news%20good.mp4
Clip 4https://www.dropbox.com/s/x8ydfytmkqz10v7/Clip%204%20Breaking%20bad%20news%20good.mp4
Organ Donation Past, Present and Future
Assessing understanding
Planning
Confirming understanding and acceptance of loss
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?”
Organ Donation Past, Present and Future
De-coupling
Planning
Confirming understanding and acceptance of loss
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.”
Organ Donation Past, Present and Future
Discussing donation
Planning
Confirming understanding and acceptance of loss
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
Organ Donation Past, Present and Future
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
Clip 5https://www.dropbox.com/s/khwovk8lo8p9l2l/Clip%205%20Transition%20to%20SNOD%20not%20on%20ODR.mp4
Clip 5https://www.dropbox.com/s/khwovk8lo8p9l2l/Clip%205%20Transition%20to%20SNOD%20not%20on%20ODR.mp4
Organ Donation Past, Present and Future
Making the transition
Planning
Confirming understanding and acceptance of loss
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.”
Organ Donation Past, Present and Future
Discussing donation
Planning
Confirming understanding and acceptance of loss
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.”
Organ Donation Past, Present and Future
Patient’s wishes are not known
Planning
Confirming understanding and acceptance of loss
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.”
Organ Donation Past, Present and Future
Patient’s wishes are not known
Planning
Confirming understanding and acceptance of loss
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
Organ Donation Past, Present and Future
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
Organ Donation Past, Present and Future
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
Clip 6https://www.dropbox.com/s/7t18071kocpbh9a/Clip%206%20Transition%20to%20SNOD%20on%20ODR.mp4
Clip 6https://www.dropbox.com/s/7t18071kocpbh9a/Clip%206%20Transition%20to%20SNOD%20on%20ODR.mp4
Organ Donation Past, Present and Future
Prior first person consent
Planning
Confirming understanding and acceptance of loss
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.”
Organ Donation Past, Present and Future
Prior first person consent
Planning
Confirming understanding and acceptance of loss
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.”
Organ Donation Past, Present and Future
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