WICS 2014
DBDs, DCDs and DVDs!
Dr Paul Murphy National Clinical Lead for Organ Donation NHS Blood and Transplant
1
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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
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Deceased donors and transplant waiting lists, 2006
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Deceased donation, 2006
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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
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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
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809
1320
63.1%
Deceased donors up to 2013-14
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Deceased donors, transplants and the transplant waiting list 2003-2014
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Renal replacement therapies in UK
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The UK framework for donation
Clinical leads Embedded coordinators Donation Committees
More potential DCD donors having their wishes to donate recognised, fulfilled and maximised Acute hospitals
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International donation rates, 2012
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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?
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• 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
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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.
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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
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Consent / authorisation rates, 2007-14
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Family refusal rates
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Taking Organ Transplantation to 2020
‘The aim is to match world-class performance in organ donation and transplantation.’
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Overview of TOT2020
‘Should any of these groups fail to respond, the aims of this strategy will not be fully achieved.’
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Donor hospitals Brain-stem death testing
In 2012/13, there were 363 patients not tested despite fulfilling the preconditions.
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Donor hospitals Referral of potential DCD donors
Delays in decision making are recognised as an obstacle to the referral of ALL potential DCD donors.
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Donor hospitals Collaboration with the specialist nurse
Availability of the specialist nurse is fundamental to more widespread involvement in the family approach
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International family refusal rates, 2011
Reducing family refusal rates to 20% ≈ 400 donors, 1200 transplants
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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.’
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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
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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.
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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
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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.
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Planning Planning
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
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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.
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Planning Introducing 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
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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.”
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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.
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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
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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
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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
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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.’
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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.’
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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
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www.odt.nhs.uk/donation/deceased-donation/consent-authorisation/family-approach.asp
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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
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