1. Optimal Place of Death for Patients with End Stage Life-Limiting Illness Blackpool Teaching Hospitals NHS Foundation Trust

2. ‘Perception is Everything’

3. Speciality Mortality Review Meetings A Recurring Theme: ‘This patient should never have been admitted to hospital just to die!’

4. One hospital consultant’s observation at mortality review meeting: In social conversation with a GP colleague: “Amber Care – oh, that must be something to do with the latest offering down at the local pub!”

5. AQuA Mortality Collaborative (AMC) The trust mortality committee approved the profiling of this group of patients as our local AMC project, with a view to informing the potential for improvement in the EOLC service across the health economy.

6. AMC EOL ‘Core Group’ ‘Day to day’ project lead Palliative medicine consultant (acute unit) Palliative medicine consultant (community) EOLC facilitator acute trust EOLC community lead nurse Hospice consultant CCG representatives (nursing and medical) Acute unit associate director of informatics CCG informatics officer

7. Project Primary Aim To facilitate the avoidance of unnecessary admission to hospital of patients with end stage life limiting illness who have expressed a desire to die in their own homes or other community location

8. Project Secondary Aims To investigate the overall profile of patients dying within 30 days of discharge from hospital

9. Fylde Coast End of Life Care Strategic Group (CCG’s)

10. Death in Usual Place of Residence (Fylde & Wyre) 2013/2014 Fylde & Wyre - 46.1% (GM.SCumbria & Lancs - 41.7%) 2014/2015 Fylde & Wyre - 47.6% (GM.Scumbria & Lancs - 42.8%)

11. Death in Usual Place of Residence (Blackpool) 2013/2014 Blackpool - 43.3% (GM.SCumbria & Lancs - 41.7%) 2014/2015 Blackpool - 43.5% (GM.Scumbria & Lancs - 42.8%)

12. Death in Usual Place of Residence (Blackpool v Fylde & Wyre) Blackpool – High levels of deprivation Blackpool – Persistently High mortality

13. To facilitate the avoidance of end of life admission to hospital for patients with end stage life limiting illness who have expressed a desire to die in their own homes or other community location Long established care home education 6 steps domiciliary care education programme End of life education programme for all providers, not just health care professionals Multi professional education and training funds for educational rollout ‘Amber Care’ project - Funding Rapid Discharge Process Hospice at Home – Funding Care coordination through FCMS and out of hours GP Trinity services – Clinical nurse specialist s, Inpatient unit, Day unit, Lymphoedema service, Bereavement service Community services – Marie Curie and district nurses Macmillan GP’s  Leadership & Trainers  Educational platforms  Media for the dissemination of information  Identification of patients  Multidisciplinary input  IT support  Communication with patients and between health care professionals – individual patient request  Human resources  Pharmacy support  Family support  Patient request Communication Individualised Care Plans EPaCCS - Electronic palliative care coordination system Standardised DNACPR forms/policy  Leadership in service planning and business case development  Training (medical staff)  Training (nursing staff) Pharmacy support Communication & IT support Primary drivers are systems components which will contribute to moving the primary outcome. Secondary drivers are elements of the associated primary driver. They can be used to create projects or change packages that will affect the primary driver.

14. AMC Core Group Function Four ‘face to face’ meetings of the core group over the course of the project Regular e-mail communications between face to face meetings Identification of ‘achievable’ primary and secondary aims One hospice based meeting to conduct mapping exercise with AQuA support for end of life care service provision (one cancer and one non-cancer patient) Outputs from the mapping exercise guided the core group’s working action plan

15. AMC EOL Project Outputs and Action Plan ‘Communication, communication, communication!’ – Ongoing focus on the whole discharge notification process EOLC key questions field to be added to case note review proforma for all deceased patients (death within 48 hrs project) An ongoing responsibility for EOL care champions to encourage medical and nursing staff to access existing education and training material GP practices, where targeted education on EOL care might be most fruitful, to be identified (CCG’s) A review system for establishing the ‘profile’ of patients dying within 30 days of discharge to be developed

16. AMC EOL Project Outputs and Action Plan contd. To review, revise and update the trust’s intranet site containing key contact information for health care professionals involved in end of life care (acute unit leads, community lead and hospice lead) Active continuing support for the continuing roll out of the ‘Amber Care’ project within the acute trust Regular frequency and standardisation of GP supportive care registers to be encouraged (CCG’s) Acute unit specialities to develop their own patient/care information leaflets for the end of life care of those with end stage organ failure or other life limiting disease. Use in conjunction with health economy generic leaflet What to Expect When Someone is Dying.

17. Deaths within 48hrs Project Experienced generalist lead clinician FY2 trainees (7/20) Retrospective case notes review for patients dying within 48 hrs of admission Identification of those, with end stage organ failure or multiple co- morbidities & frailty, whose death in hospital might have been avoided had the patient expressed a wish to die in the community and individualised care plans and resources had been available

18. Deaths within 48hrs Project First batch of 45 patients: Customised proforma Group 1 – Significant evidence of end stage organ failure or multiple comorbidities & frailty with or without end of life care planning Group 2 – Some evidence of end stage organ failure or multiple comorbidities & frailty, with or without end of life care planning Group 3 - Straightforward admission with severe acute illness

19. Deaths within 48hrs Project – Preliminary Results 4 sets of case notes excluded: (one neonatal death, three cases with no evidence of death prior to discharge in the case notes) Group 1: 10 cases (24%) Group 2: 11 cases (27%) Group 3: 20 cases (49%) Baseline for follow-up review in one year

20. Key lessons ‘Perception is everything’ Day-to-day core group leadership is more about ‘conducting the orchestra’ than it is about ‘composing and performing’ the piece in question Input from all team members is vital in identifying achievable primary and secondary goals Whilst the AMC program was time limited worthwhile spin off actions will need to continue after the formal AQuA project period has finished

21. Obstacles & Challenges Delivery of conclusive metrics/indicators within the formal AQuA mortality collaborative time scale has proved difficult. Appropriately motivated health care professionals are already heavily committed with existing work and projects. Agreeing the driver diagram with all team members was a challenging exercise. Team members from different areas of service provision all brought their own agenda. Agreeing primary and secondary goals was challenging

22. Conclusion ‘The potter’s wheel of integrated end of life care on the Fylde was already turning with steadily increasing speed … we hope that the AQuA mortality collaborative project has given it a helpful additional spin!