Transforming the quality of end of life care - a regional collaborative

Dr Julian AbelConsultant in Palliative Care, Weston Super Mare, England

Clinical Lead, End of Life Care, Southwest Strategic Health Authority2008 - 2013

Our Health, Our Care, Our Say. Department of Health 2006.

‘Over 500,000 adults die in England each year. Although over 50 per cent of people say they would like to be cared for and die at home if they were terminally ill, at present only 20 per cent of people die at home.’

‘We will establish end-of-life care networks, building on the co-operative approach suggested by the new urgent care strategy.’

South West Strategic Health Authority End of Life Care Network, 2008 – 2013Population 5,289,00042,000 deaths per annum

Formation of South West SHA end of life care network• Invitation to all individual Primary Care Trusts• Lead commissioners for end of life care, lead clinicians and specialist

palliative care professionals• Ring fenced mulitprofessional education and training budget, £1

million for 2008 – 9 and 2009 -10.

The End of Life Care Pathway, National End of Life Strategy 2008 (Primary and secondary drivers)

Discussions as end of life approaches

Discussions as end of life approaches

Assessment, care planning and review

Assessment, care planning and review

Delivery of high

quality services

Delivery of high

quality services

Care in the last days of lifeCare in the last days of life

• Strategic coordination

• Coordination of individual patient care

• Rapid response services

• Identification of the dying phase

• Review of needs and preferences for place of death

• Support for both patient and carer

• Recognition of wishes regarding resuscitation and organ donation

• Recognition that end of life care does not stop at the point of death.

• Timely verification and certification of death or referral to coroner

• Care and support of carer and family, including emotional and practical bereavement support

Care after deathCare after deathCoordination of careCoordination of care

• High quality care provision in all settings

• Hospitals, community, care homes, hospices, community hospitals, prisons, secure hospitals and hostels

• Ambulance services

• Agreed care plan and regular review of needs and preferences

• Assessing needs of carers

Support for carers and families

Information for patients and carers

Spiritual care services

The End of Life Care Pathway

Step 1 Step 2 Step 3 Step 6Step 5Step 4

• Open, honest communication

• Identifying triggers for discussion

Micro, meso, macro

Micro Meso Macro• Hospices• GP practices• District Nursing Services• Community Matrons• Domiciliary Care

Agencies• Nursing Homes• Residential Homes• Out of hours GP

services

• Ambulance services• Primary Care Trusts• Acute Hospitals

• South West SHA• National meeting of

SHA with National Clinical Director for End of Life Care Mike Richards

• National End of Life Care Programme

3 year programme

Year 1 Year 2 Year 3• Adoption of EPaCCS• Advance care planning

(ACP)• Nursing Homes

• Education programmes building on year 1

• Use of EPaCCS• ACP• Residential and nursing

homes

• Transforming end of life care in Acute Hospitals national programme

Transforming End of Life Care in Acute Hospitals5 key enablers1. Use of electronic palliative care coordination systems2. Use of advance care planning3. Use of treatment escalation plan (eg Amber Care Bundle)4. Use of rapid discharge home to die pathway5. Use of Integrated Care Pathway for the dying (last 48 – 72

hours)

Where people with terminal illnesses choose to die

Impact of advance care planning on place of death

EPaCCS place of death data

ICD10 desc (source ONS)

Care home (nursing or residential)

Hospice Hospital (acute or community, not psychiatric)

Other Places

Other Residence or Road

Own Residence

Total

Neoplasms 386 439 230 15 22 930 2022 Percentage place of death 19 22 11 1 1 46 100

Non cancer diagnoses 498 48 87 15 8 329 985

Percentage place of death

50 5 9 2 1 33 100

Total data set 884 487 317 30 30 1259 3007

Percentage place of death

29 16 11 1 1 42 100

ONS Mortality place of death compared to EPaCCS place of death (3007 EPaCCS deaths)

ONS DEATHS EPPACS DEATHS

Total Total Total Total

Non cancer

Cancer Non cancer

Cancer

Hospital 45.9 32.8 Hospital 9 11

Care Home 34.2 18.1 Care Home

50 19

Home 18 31 Home 33 46

Hospice 0.8 16.8 Hospice 5 22

Elsewhere 1.1 1.3 Elsewhere 3 2

Percentage death in usual place of residence (DIUPR)Rolling three quarters 2010 to 2013

1 2 3 4 5 6 7 8 9 10 1135.037.039.041.043.045.047.049.051.053.0

Percentage DIUPR England Percentage DIUPR South West

South West SHA

First National Survey of Bereaved People 2012Benchmark Ratings for key 11 questions about quality of care.

Dame Cicely Saunders (1918 - 2005) founder of the modern hospice movement

How people die remains in the memory of those who live on