WICS 2014 - organ donation Dr Paul Murphy

1. WICS 2014
DBDs, DCDs and DVDs!
Dr Paul Murphy
National Clinical Lead for Organ Donation
NHS Blood and Transplant
1

2. WICS 2014
Outline
• UK framework for organ donation
• Summary of recent achievements
– Donation after circulatory death
• Future challenges
– Taking Organ Transplantation to 2020
• Optimising the family approach

3. WICS 2014
Deceased donors and transplant
waiting lists, 2006

4. WICS 2014
Deceased donation, 2006

5. WICS 2014
Organ Donation Taskforce
Donation as part of end of life care
All parts of the NHS must embrace organ
donation as a usual, not an unusual event.
Local policies, constructed around national
guidelines, should be put in place.
Discussions about donation should be part of
all end-of-life care when appropriate. Each
Trust should have an identified clinical
donation champion and a Trust donation
committee to help achieve this.
Donation should not be viewed
as something to be inflicted
upon patients and families after
end of life care.
Rather, it should be considered
to be a fundamental component
of end of life care and not
denied to patients because they
are dying in the wrong place or
in the wrong way
Recommendation 4

6. WICS 2014
The UK framework for donation
National ODO
Employment of coordinators
Commissioning of retrieval
Audit
Public engagement
Education and training
Funding
Resolution of ethical and
legal obstacles
Regulation
Public recognition
Clinical leads
Embedded coordinators
Donation Committees
NHS Blood and Transplant
Departments of Health
More patients
having their
wishes to
donate
recognised,
fulfilled and
maximised
Acute hospitals

7. WICS 2014
809
1320
63.1%
Deceased donors up to 2013-14

8. WICS 2014
Deceased donors, transplants and the
transplant waiting list 2003-2014

9. WICS 2014
Renal replacement therapies in UK

10. WICS 2014
The UK framework for donation
Clinical leads
Embedded coordinators
Donation Committees
More potential
DCD donors
having their
wishes to
donate
recognised,
fulfilled and
maximisedAcute hospitals

11. WICS 2014
International donation rates, 2012

12. WICS 2014
Potential for DBD in UK
Potential DBD pool
Actual DBD
donors
Spain ≈ 50 32
UK 19.9 12.5
per million population, 2013
How can the potential for donation after brain-
stem death vary so much?

13. WICS 2014
• Lower incidence of acute brain
injuries
• Improved outcomes from acute
brain injury
• Higher standards for
neurological determination of
death
• Different approach to what end
of life care means and when it
is indicated
Does treatment limitation or
withdrawal account for these
differences?
Brain-stem death in the UK

14. WICS 2014
Ethicus study
End of life Categories (% patients)
Unsuccessful
CPR
Brain
death
Treatment
limitation
Treatment
withdrawal
Active
shortening of
dying process
Northern
Denmark, Finland, Ireland,
Netherlands, Sweden, UK
10.2 3.2 38.2 47.4 0.9
Central
Austria, Belgium, Czechia,
Germany, Switzerland
17.9 7.6 34.1 33.8 6.5
Southern
Greece, Israel, Italy, Portugal,
Spain, Turkey
30.1 12.4 39.6 17.9 0.1
Range between countries 5 - 48 0 - 15 16 - 70 5 - 69 0 - 19
End-of-Life Practices in European Intensive Care Units
Sprung et al, 2003. JAMA 290: 790-797.

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Hypothesis
Decisions to limit or withdraw treatments
in patients with acute catastrophic brain
injury lessen the potential for donation
after brain-stem death, but may promote
donation after circulatory death.

16. WICS 2014
Deceased donors in the UK up to 2012-13
• Expansion of DCD programmes
• Donor identification and referral
from Emergency Departments
– Clinical leads, specialist nurses and
hospital donation committees
– improved relationships between
national agencies and donor
hospitals
– Resolution of professional, ethical
and legal obstacles

17. WICS 2014
Consent / authorisation rates, 2007-14

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Family refusal rates

19. WICS 2014
Taking Organ Transplantation to 2020
‘The aim is to match world-class
performance in organ donation
and transplantation.’

20. WICS 2014
Overview of TOT2020
‘Should any of these
groups fail to
respond, the aims of
this strategy will not
be fully achieved.’

21. WICS 2014
Donor hospitals
Brain-stem death testing
In 2012/13, there were 363
patients not tested despite
fulfilling the preconditions.

22. WICS 2014
Donor hospitals
Referral of potential DCD donors
Delays in decision making are
recognised as an obstacle to the
referral of ALL potential DCD
donors.

23. WICS 2014
Donor hospitals
Collaboration with the specialist nurse
Availability of the specialist nurse
is fundamental to more
widespread involvement in the
family approach

24. WICS 2014
International family refusal rates, 2011
Reducing family refusal rates
to 20% ≈ 400 donors, 1200
transplants

25. WICS 2014
Why do families say ‘no’?
‘some simply do not want to make the
decision, and for them saying ‘No’ is
the quickest way to settle the matter.’

26. WICS 2014
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

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Impact of SNOD - DBD

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Impact of SNOD - DCD

29. WICS 2014
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.

30. WICS 2014
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

31. WICS 2014
Planning the family approach
Planning
• Establish the team
− Consultant, bedside nurse, SNOD
• Identify
− prior 1st person consent
− key family members by name
− key family issues
• Agree timing and setting, roles
The specialist nurse
can help to identify
families who have yet
to understand and /
or accept the
inevitability of their
loss.

32. WICS 2014
PlanningPlanning
Clip 2 Good planning.mov
Embed Clip 2
Or play from video Title 2, Ch 1 – 04:03 –
07:13
Video:Clip 2 good planning

33. WICS 2014
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.

34. WICS 2014
PlanningIntroducing the specialist nurse
Clip1 introducing SNOD.mov
Embed Clip 1
Or play from Video: Title 2, Ch 1 – 11:40 –
12:00
Video:Clip 1 Introducing the SNOD

35. WICS 2014
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.”

36. WICS 2014
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.

37. WICS 2014
Breaking bad news?
Clip 3 Breaking Bad news poor.mov
Embed Clip 3
Or play from video Title 2, Ch1 – 08:20 –
10:07
Video:Clip 3 Breaking Bad News poor

38. WICS 2014
Clip 4 Breaking bad news good.mov
Embed Clip 4
Or play from video Title 2, Ch 1 13:20 –
15:40
Ensuring understanding
Video:Clip 4 Breaking bad news good

39. WICS 2014
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

40. WICS 2014
Patient’s wishes are not known
Planning
Confirming
understanding and
acceptance of loss
Discussing
donation
“Mrs Smith, do you know whether your
husband wanted to be an organ donor
when he died?”
‘some simply do not want to make the
decision, and for them saying ‘No’ is
the quickest way to settle the matter.’

41. WICS 2014
Patient’s wishes are not known
Planning
Confirming
understanding and
acceptance of loss
Discussing
donation
“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
‘some simply do not want to make the
decision, and for them saying ‘No’ is
the quickest way to settle the matter.’

42. WICS 2014
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
Video:Clip 5 Transition to SNOD not on ODR

43. WICS 2014
www.odt.nhs.uk/donation/deceased-donation/consent-authorisation/family-approach.asp

44. WICS 2014
Summary
• Significant increase in donation since 2008
– Expansion of DCD programmes
• End of life care practices impact upon
potential for donation
• TOT2020 strategy
– Targeted against the whole pathway
– Requires revolution in public attitudes and
actions
• Improving the outcome of the family
approach is a key objective

45. WICS 2014