WICS 2014

DBDs, DCDs and DVDs!

Dr Paul Murphy National Clinical Lead for Organ Donation NHS Blood and Transplant

1  

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

WICS 2014

Deceased donors and transplant waiting lists, 2006

WICS 2014

Deceased donation, 2006

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

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

WICS 2014

809

1320

63.1%

Deceased donors up to 2013-14

WICS 2014

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

WICS 2014

Renal replacement therapies in UK

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 maximised Acute hospitals

WICS 2014

International donation rates, 2012

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?

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

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.

WICS 2014

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.

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

WICS 2014

Consent / authorisation rates, 2007-14

WICS 2014

Family refusal rates

WICS 2014

Taking Organ Transplantation to 2020

‘The aim is to match world-class performance in organ donation and transplantation.’

WICS 2014

Overview of TOT2020

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

WICS 2014

Donor hospitals Brain-stem death testing

In 2012/13, there were 363 patients not tested despite fulfilling the preconditions.

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.

WICS 2014

Donor hospitals Collaboration with the specialist nurse

Availability of the specialist nurse is fundamental to more widespread involvement in the family approach

WICS 2014

International family refusal rates, 2011

Reducing family refusal rates to 20% ≈ 400 donors, 1200 transplants

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.’

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

WICS 2014

Impact of SNOD - DBD

WICS 2014

Impact of SNOD - DCD

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.

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

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.

WICS 2014

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

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.

WICS 2014

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

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.”

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.

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

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

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

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.’

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.’

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

WICS 2014

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

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

WICS 2014