Transcript Family Approach and Consent

Donor Family Experience
Ali Carter
&
Jessica Gregory SNOD
26th June 2013
SOUTH EAST
Organ Donation Past, Present and Future
Organ Donation Past, Present and Future
Another family’s story…
“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.”
Organ Donation Past, Present and Future
3
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.”
Organ Donation Past, Present and Future
4
Transplant Recipient Experience
Joanna & Lucie Perry
&
Jessica Gregory SNOD
26th June 2013
SOUTH EAST
Organ Donation Past, Present and Future
Organ Donation Past, Present and Future
Family Approach and Consent
Dr Steve Drage, CLOD
Dr Paul Murphy, National
Clinical Lead for Organ
Donation
Organ Donation Past, Present and Future
26th June 2013
SOUTH EAST
7
Session Objectives
SOUTH EAST
• 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
8
Regional Data
Dr Steve Drage,
Brighton & Sussex University Hospitals,
CLOD
SOUTH EAST
Organ Donation Past, Present and Future
9
Where are potential donors in the
South East team lost?
SOUTH EAST
10th
10th
Conclusion:
DBD worse than DCD?
6th
Organ Donation Past, Present and Future
4th
10
SOUTH EAST
Consent
DBD
44%
DCD
67%
+
17%
59%
+
SNOD
=
SNOD
Doctor
(68)
(89)
(56)
(78)
Eastern
Scotland
London
South West
Doctor
57%
(58)
UK
DBD
Doctor
% approaches where SN-OD involved
100
92
80
+
SOUTH EAST
SNOD
5th
92
91
88
85
83
75
75
75
60
62
58
52
40
20
0
1 April 2012 to 31 March 2013, data as at 4 April 2013
Organ Donation Past, Present and Future
Team
-------- National rate
12
DCD
Doctor
% approaches where SN-OD involved
100
+
SOUTH EAST
SNOD
2nd
85
80
80
76
83
80
74
69
65
60
58
53
53
40
37
20
0
Team
-------- National rate
1 April 2012 to 31 March 2013, data as at 4 April 2013
Organ Donation Past, Present and Future
13
Approaching the families of potential
organ donors
Dr Paul Murphy
National Clinical Lead for Organ Donation
Organ Donation Past, Present and Future
14
Consent / authorisation
Outline
• Background information
– Potential Donor Audit data
– Legal framework for consent
• NICE Short Clinical Guideline
– Family approach
• Implementation
– NHSBT documents
– DVD
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
DBD
If the UK had a 20% family
refusal rate
• Additional 120 DBD donors
• Additional 280 DCD donors
• Additional 1200 transplants
Organ Donation Past, Present and Future
Family refusal rates
45
40
family refusal rate
35
30
25
20
15
10
5
0
UK
Italy
Romania
Rep
Ireland
Croatia
Organ Donation Past, Present and Future
Spain
Poland
Slovakia
Hungary
Czech
Republic
Consent / authorisation rates, 2011-2
UK average (range)
64(54 – 78)%
Organ Donation Past, Present and Future
52 (42 - 67)%
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
Impact of the UK Organ Donor Register?
100
20
consent / authorisation rate (%)
DBD
DCD
18
80
16
70
67.7% 14
60
58.2%
12
50
10
40
8
30
6
20
4
10
2
0
0
2003/04 2004/05 2005/06 2006/07 2007/08 2008/09 2009/10 2010/11 2011/12 2012/13
year
Organ Donation Past, Present and Future
registrants (millions)
ODR
90
Public support?
BBC DoNation Survey
August, 2005
Organ Donation Past, Present and Future
Why do families say ‘no’?
Organ Donation Past, Present and Future
The family approach: international evidence
• Preparation and time
Planning
• Acceptance of loss
– Clarity of language
– Understanding concept of brain death
Confirming
understanding and
• Positive impact of a competent and
experienced requestor
acceptance of loss
• Adverse impact of certain kinds of
language
– Apologetic
– Negative
Discussing
donation
Organ Donation Past, Present and Future
Modifiable elements of the family
approach
Consent / authorisation DBD donation
80
Family consent / aut horisat ion rat e ( %)
75
70
Consent rate when
SNOD involved
65
60
Consent rate when
SNOD not involved
55
50
45
Organ Donation Past, Present and Future
2
20
11
/1
1
20
10
/1
0
20
09
/1
/9
20
08
/8
20
07
/7
06
20
20
05
/6
40
Consent / authorisation DCD donation
75
70
Consent rate when
SNOD involved
Family consent / aut horisat ion rat e ( %)
65
60
55
50
45
40
Consent rate when
SNOD not involved
35
Organ Donation Past, Present and Future
2
20
11
/1
1
20
10
/1
0
20
09
/1
/9
20
08
/8
20
07
/7
06
20
20
05
/6
30
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
UK General Medical Council guidance on end of
life care , 2010
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.
Organ Donation Past, Present and Future
Involvement of SNOD in approach to
families
80
71
70
involvement of SN-OD in family approach ( %)
63
59
60
51
50
40
DBD
DCD
30
20
10
0
Oct 0 9 - Mar 1 0
Organ Donation Past, Present and Future
Apr 1 0 - Sep 1 0
Oct 1 0 - Mar 1 1
Apr 1 1 - Mar 1 2
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
Organ Donation Past, Present and Future
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
Planning
Establish the team:
• Consultant
• SN-OD
The planning phase is
possibly the most
important element of
the approach. SNODs are very well
placed to reinforce the
key elements of best
practice.
Organ Donation Past, Present and Future
• Bedside nurse
Meet in private
Clarify clinical situation
Seek evidence of prior consent
Planning the family approach
Planning
Key family members by name
Key family issues
The specialist nurse
can help to identify
families who have yet
to understand and /
or accept the
inevitability of their
loss.
Agree timing and setting,
ensuring these are appropriate
to family needs
Involve others as required, eg
faith leaders
Organ Donation Past, Present and Future
Planning the family approach
Planning
Although clinical
circumstances vary,
as a standard SNODs should be
involved in planning
the family approach
and subsequent
contact with the family
Organ Donation Past, Present and Future
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
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
Planning
• introducing the SN-OD
Confirming
understanding
and acceptance
of loss
• 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
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
Introducing the SN-OD
Planning
Confirming
understanding
and acceptance
of loss
“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.”
There is no evidence that families
recognise a conflict when meeting
the SN-OD at this time.
Organ Donation Past, Present and Future
Confirming understanding
Planning
• introducing the SN-OD
Confirming
understanding
and acceptance
of loss
• 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
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
Organ Donation Past, Present and Future
Assessing understanding
Planning
Confirming
understanding
and acceptance
of loss
“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?”
It is often useful to ask a family lead to
explain their current understanding of a
loved one’s condition.
Organ Donation Past, Present and Future
De-coupling
Planning
Confirming
understanding
and acceptance
of loss
“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.”
Families are hardly likely to consider a
post-mortem intervention if they have yet
to accept the death of a loved one.
Organ Donation Past, Present and Future
Discussing donation
Planning
• making the transition
• the implications of prior first
person consent
Confirming
understanding and
acceptance of loss
• careful use of language
− positive vs negative
− open vs closed questions
Discussing
donation
Organ Donation Past, Present and Future
− anticipation of common
concerns
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
Making the transition
Planning
Confirming
understanding and
acceptance of loss
Discussing
donation
Organ Donation Past, Present and Future
“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.”
Who mentions ‘donation’ for the first
time is less important than when and
how it is introduced
Discussing donation
Planning
Confirming
understanding and
“Louise here has expertise in this
area, and I am now going to hand
over to her.”
acceptance of loss
Discussing
donation
Organ Donation Past, Present and Future
Who mentions ‘donation’ for the first
time is less important than when and
how it is introduced
Patient’s wishes are not known
Planning
“Mrs Smith, do you know whether your
husband wanted to be an organ donor
when he died?”
Confirming
understanding and
acceptance of loss
Discussing
donation
Organ Donation Past, Present and Future
“Mrs Smith, tell me what your husband
wanted to happen when he died.”
The law passes authority for decision
making onto the family when the
patient’s wishes are unknown
Patient’s wishes are not known
Planning
X
“Mrs Smith, do you know whether your
husband wanted to be an organ donor
when he died?”
Confirming
understanding and
acceptance of loss
Discussing
donation
Organ Donation Past, Present and Future
“Mrs Smith, tell me what your husband
wanted to happen when he died.”
The law passes authority for decision
making onto the family when the
patient’s wishes are unknown
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
Organ Donation Past, Present and Future
Prior first person consent
Planning
Confirming
understanding and
acceptance of loss
Discussing
donation
Organ Donation Past, Present and Future
“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.”
If a patient is on the Organ Donor
Register, then consent has already
been given.
Prior first person consent
Planning
Confirming
understanding and
acceptance of loss
Discussing
donation
Organ Donation Past, Present and Future
“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.”
There is no provision in law for
families to overturn the wishes of the
patient.
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
Organ Donation Past, Present and Future