Optimal Place of Death for Patients with End Stage Life-Limiting Illness

Blackpool Teaching Hospitals NHS Foundation Trust

‘Perception is Everything’

Speciality Mortality Review Meetings

A Recurring Theme:

‘This patient should never have been

admitted to hospital just to die!’

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!”

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.

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

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

Project Secondary Aims

To investigate the overall profile of patients dying within 30 days of discharge from hospital

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

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%)

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%)

Death in Usual Place of Residence(Blackpool v Fylde & Wyre)

Blackpool – High levels of deprivation

Blackpool – Persistently High mortality

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 education6 steps domiciliary care education programmeEnd of life education programme for all providers, not just health care professionals Multi professional education and training funds for educational rollout

‘Amber Care’ project - FundingRapid Discharge ProcessHospice at Home – FundingCare coordination through FCMS and out of hours GP

Trinity services – Clinical nurse specialist s, Inpatient unit, Day unit, Lymphoedema service, Bereavement serviceCommunity services – Marie Curie and district nursesMacmillan 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 PlansEPaCCS - Electronic palliative care coordination systemStandardised 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.

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

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

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.

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

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

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

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

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

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!