Organ Donation Past, Present and Future Donor Identification and Referral Jacki Newby Dr Huw Twamley 3 rd July NORTHERN

Organ Donation Past, Present and Future Regional Data 2 Jacki Newby NORTHERN

National rate Referral rate (%) Team EasternLondon Midlands North West Northern Ireland Scotland South Central South East South Wales South West Yorkshire 1 April 2012 to 31 March 2013, data as at 4 April st Organ Donation Past, Present and Future 3 Northern DBD referral rate NORTHERN

1 April 2012 to 31 March 2013, data as at 4 April 2013 Organ Donation Past, Present and Future 4 Northern DBD referral rate 1South Tyneside NHS Foundation Trust 2City Hospitals Sunderland NHS Foundation Trust 3North Cumbria University Hospitals NHS Trust 4Gateshead Health NHS Foundation Trust 5The Newcastle Upon Tyne Hospitals NHS Foundation Trust 6Northumbria Healthcare NHS Foundation Trust 7South Tees Hospitals NHS Foundation Trust 8North Tees and Hartlepool NHS Foundation Trust 9County Durham and Darlington NHS Foundation Trust NORTHERN

National rate Referral rate (%) Team EasternLondon Midlands North West Northern Ireland Scotland South Central South East South Wales South West Yorkshire 1 April 2012 to 31 March 2013, data as at 4 April 2013 Organ Donation Past, Present and Future 5 Northern DCD referral rate NORTHERN 1 st

Organ Donation Past, Present and Future 6 Northern DCD referral rate 1 April 2012 to 31 March 2013, data as at 4 April South Tyneside NHS Foundation Trust 2City Hospitals Sunderland NHS Foundation Trust 3North Cumbria University Hospitals NHS Trust 4Gateshead Health NHS Foundation Trust 5The Newcastle Upon Tyne Hospitals NHS Foundation Trust 6Northumbria Healthcare NHS Foundation Trust 7South Tees Hospitals NHS Foundation Trust 8North Tees and Hartlepool NHS Foundation Trust 9County Durham and Darlington NHS Foundation Trust

Northern Referral Process Jacki Newby Northern Organ Donation Team July 3 rd 2013

History Lesson In 2010 SNOD’s asked for 100% referral of BSD testing and WLST REGARDLESS OF AGE OR CLINICAL CONDITION. Clinicians agreed if we met 2 factors – SPEED = We needed to have a speedy process for deciding donation potential. – ETHICS = We agreed we would only approach the families of patients who had donation potential, meaning we would provisionally place organs before approaching families.

Jacki Newby – Northern Organ Donation Team

The Northern Referral Model Is a means of standardising the referral process, and standardising our SNOD response to each referral. A process that is measurable, equitable, transparent and quick. A 2 part system answering 2 separate questions – is the patient suitable to donate – have they organs suitable to transplant

NORTHERN REFERRAL PROCESS (to be used with NHSDBT referral form FRM 4228) Age >85yrears Are there any Absolute Contraindications = see below Are there plans to perform BSD tests YES NO Does the patient have any ABSOLUTE CONTRAINDICATIONS Does the patient have cancer with evidence of spread (including lymph nodes) within 3years (localised prostate, thyroid, insitu cervical cancer & non melanotic skin cancer are acceptable) haematological cancer (myeloma, lymphoma, leukaemia) malignant melanoma (except excised Stage 1) a confirmed / suspected prion disease human TSE CJD & vCJD, familial CJD ) : active HIV disease (not infection) : TB active & untreated YES Decline donation from this patient and advise re corneas NO Attend unit to assess patient Is the patient over 85 YES Decline donation and advise re tissues NO YES NO Decline donation and advise regarding corneas Is the patients systolic over 50mmHg NO Decline donation as this patient is already in FWIT and advise regarding corneas or other tissue YES Is the patient unstable (systolic between 50 and 75mmHg) YES Ask medical staff to consider measures to stabilise the patient (fluids, inotropes, increased ventilation etc) if they cannot or will not, and inevitable death is expected within 2 hours decline donation. This patient is in the dying process and there is no time to facilitate donation: advise about corneas and tissue NO Do medical staff believe that withdrawal of care will result in death within 6 hours YES NO Decline donation as this patient is not expected to die within timeframes for donation THIS PATIENT IS A POTENTIAL DONOR: TAKE FULL REFERRAL DETAILS AND FOLLOW REFERRAL PROCESS

Page 1 gives a quick answer for those patients who are not suitable to donate. In some regions SNOD’s will attend the unit to determine donation potential; in Northern we do this by phone. In some regions referrals are taken to a team manager or regional manager to decide donation potential; here our system decides. Once the SNOD has established they are a potential donor we look at every organ and the donation potential of each organ. SPEED

Consider kidney donation as its the organ most likely to be accepted Does the patient have established renal failure documented CKD stage 3B or higher; normal GFR <45, or has had a kidney transplant for longer than 6 months, or do they have renal malignancy (low grade & previously excised tumours may be considered) NO YES Discuss possible donation with 6 recipient centres. If a centre states they would accept stop offering to other centres and approach family; offering of other organs is as usual using EOS and fast tracking. Rule out kidney donation concentrate on LIVER; does the patient have a diagnosed cirrhosis, portal vein thrombosis or have acute liver failure with ALT / AST > 1000 YES NO Rule out liver donation: and concentrate on LUNGS. Does the patient aged over 65, has intra-thoracic malignancy; major consolidation on CXR; or chronic destructive or suppurative lung disease YES Rule out lung donation: consider PANCREAS donation; is the patient aged over 65, do they have type I diabetes or pancreatic malignancy NO YES This patient has no organs which are suitable for donation: Explain this to referring unit and discuss tissue / corneal donation Discuss possible donation with all recipient centres using offering form. If a centre states they would accept stop offering to other centres and approach family. Offering of other organs is as usual using EOS and fast tracking. Discuss possible donation with 5 recipient centres using offering form. If a centre states they would accept stop offering to other centres and approach family. Offering of other organs is as usual using EOS and fast tracking. Discuss possible donation with 3 recipient centres using offering form. If a centre states they would accept stop offering to other centres and approach family. If no centres accept:- this patient has organs which have not been accepted by transplant centres. Explain to referring unit and discuss tissue / corneas.

Page 2 allows us to either – Decline organs using James Neuberger’s criteria – Or ask transplanting centres if they would accept organs from this patient. 30% of non proceeding DCD donations are due to organs being declined by transplanting centres (134 cases in 2012) In 2012 the Northern Region took consent from only 3 patients who had organs declined by centres. ETHICS

Lessons learned from an audit of 451 referrals Referrals take time, the key is to refer before talking to a family. 56% of all referrals are quickly declined by the SNOD. 44% referrals taken to transplanting centres – 49% accepted: of these 82% are accepted by the first centre contacted – 51% declined: average time to screen is 2 hours Some patients were always declined (ischemic bowel, ruptured AAA, OOHCA in pts over 75) more work is needed on criteria. The system works

Jacki Newby – Northern Organ Donation team

Organ Donation Past, Present and Future Identification and Referral 17 Dr Huw Twamley North West Regional CLOD

Timely Identification and Referral of Potential Organ Donors Organ Donation Past, Present and Future 18

Session Objectives 19 Understand difficulties with donor identification and referral Recognise benefits of improving elements of the process – Increased identification and referral – Timely referral – Responsiveness to referral Consider which of the proposed methods of identification and referral may work in your hospital Organ Donation Past, Present and Future

UK rates of referral Organ Donation Past, Present and Future 91% 52% 20

Overall timings Organ Donation Past, Present and Future 21

Aims of Strategy 100% Identification of potential Donors 100% Referral of Potential Donors 100% Timely Referral Implement NICE Guidance The consideration of donation should be core ICU / ED and part of all end of life care plans. Timely referral promotes this possibility Organ Donation Past, Present and Future 22

NICE Guideline 135 Organ Donation Past, Present and Future 23

British Medical Association 2012 The research data showed that the use of clinical triggers and a requirement to refer according to standard criteria led to an increase in both referrals and donors. It is hoped that implementation of the NICE guideline will result in early and consistent donor referral. Organ Donation Past, Present and Future 24

General Medical Council 2010 “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.” “You should follow any national procedures for identifying potential organ donors and, in appropriate cases, for notifying the local transplant coordinator.” Decisions to limit or withdraw treatments in potential DCD donors MUST be in compliance with national End of Life Care policy. Organ Donation Past, Present and Future 25

UK Donation Ethics Committee “There is no ethical dilemma if the treating clinician wishes to make contact with the SN-OD at an early stage, while the patient is seriously ill and death is likely, but before a formal decision has been made to withdraw life-sustaining treatment.” [“Benefits] include establishing whether there are contra-indications for organ donation…… Other practical and organisational factors might be relevant – if the SN-OD is based at a distant location then early contact can help to minimise distressing delays for the family.” Organ Donation Past, Present and Future 26

Objectives, benefits and outcomes All potential donors are identified and referred All donors are referred in a timely fashion SN-ODs are deployed in a way that improves responsiveness All patients are given the option of donation Access to clinical advice Prompt donor optimisation Resolution of potential legal obstacles Early assessment of marginal donors Early tissue typing / screening Planning the family approach Reduction in delays for families and units Increased donor numbers Improved consent / authorisation rates Increase in donor organs Better experience for families and staff Organ Donation Past, Present and Future 27

NHSBT Strategy Implementation not publication Key area for collaboration between hospitals and donor care teams Very clear emphasis on benefits – How not who Suite of options Clarity over implementation Organ Donation Past, Present and Future 28

Strategy proposals Every hospital should have a written policy for the identification and timely referral of all potential donors Every donating area within a given hospital adopts a consistent approach As far as possible ‘decouple’ early referral from individual clinician Donation Committees and SN-OD teams should collaborate to develop and implement a policy that ensures that all potential donors are identified and referred in a timely fashion. Organ Donation Past, Present and Future 29

1. Daily visit by SN-OD Organ Donation Past, Present and Future 30

2. Early daily phone call Organ Donation Past, Present and Future 31

3. Daily ICU team safety brief Organ Donation Past, Present and Future 32

Organ Donation Past, Present and Future North Bristol Trust ICU Safety Brief 33

4. Standard Operating Procedure Organ Donation Past, Present and Future 34

Midlands Standard Operating Procedure 35 Organ Donation Past, Present and Future

5. Nurse led referrals Organ Donation Past, Present and Future 36

Summary 37 Donation should be a element of end of life care Make identification and referral routine business of the unit. This decouples early referral from the individual clinician caring for the patient Implement or develop a solutions /policy for your individual hospitals adopt to timely referral Ensure consistency within a given hospital Organ Donation Past, Present and Future

38 Organ Donation Past, Present and Future

What are the barriers to implementing the NICE guidelines in your unit: any solutions? 39  Whichever is the earlier, either: Use trigger factors in patients with a catastrophic brain injury The absence of one or more cranial nerve reflexes AND a GCS of 4 or less that is not explained by sedation  And / or a decision is made to perform brainstem death tests. The intention to withdraw life-sustaining treatment in patients with a life-threatening or life-limiting condition which will, or is expected to, result in circulatory death. Organ Donation Past, Present and Future