What Does End of Life Care Look Like Aus Jan 2012

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Julian Abel

Consultant in Palliative Care

Weston super Mare, UK


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Title -

Overview - In 2008 the Department of Health publishedthe National End of Life Strategy. This document was thestart of a large initiative to improve end of life care for allpatients across the whole of the UnitedKingdom. Participation in this project has been metenthusiastically from hospital teams, hospices, primarycare teams, ambulance services and care homes. We will

discuss the major themes of the National End of LifeStrategy and how these have been implemented in NorthSomerset, a community of 200,000 people in the south

west of England. We will look at how compassionatecommunities fit into this model.


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End of Life Care Strategy:

Development Election manifesto commitment: May 2005

Our Health, Our Care, Our Say: January 2006

Ministerial announcement of strategy: June 2006 Broad consultation with stakeholders

Advisory Board + 6 Working Groups (CarePathway; Commissioning; Measurement;

Workforce; Care Homes; Analysis/Funding) Original intention had been to publish by

December 2007

Linkage to Next Stage (Darzi) Review


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End of Life Care: Problems and Concerns (1)

Lack of familiarity with death and lack of publicdiscussion

Low priority given to EOLC by the NHS and social care

Clinicians difficulty in identifying people who areapproaching the end of life

Clinicians difficulty in initiating discussions

Inadequate assessment and care planning

Poor coordination of care Suboptimal services in hospitals, care homes and the

community


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End of Life Care: Problems and Concerns (2)

Poor care in the last days of life

Problems after death (e.g. verification andcertification of death; viewing facilities etc.)

Inadequate involvement and support of carers

Inadequate training and education

Lack of robust measures of quality and effectiveness

of care Inequalities in care

Lack of dignity and respect provided to some people


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End of Life Care: Emerging themes1. Raising the public profile of end of life care

2. Strategic commissioning (PCTs and LAs) to give a

whole systems approach3. An end of life care pathway

4. Workforce development

5. Measurement

6. Funding


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The End of Life Care PathwayDiscussions asend of lifeapproaches

Discussions asend of lifeapproaches

Assessment, careplanning andreview

Assessment, careplanning andreview

Delivery of high

quality services

Delivery of high

quality services

Care in the lastdays of lifeCare in the lastdays 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 verificationand 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 ofcareCoordination ofcare

High quality care

provision in all

settings

Hospitals,

community, carehomes, hospices,

community

hospitals, prisons,

secure hospitals

and hostels

Ambulance

services

Agreed care plan

and regular review

of needs and

preferences

Assessing needs ofcarers

Support for carers and families

Information for patients and carers

Spiritual care services

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

Open, honest

communication

Identifying triggers

for discussion
http://www.maps-of-britain.co.uk/large-physical-britain-map.htm


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http://www.maps-of-britain.co.uk/large-physical-britain-map.htm


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Population of each Strategic Health

Authority


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South West Strategic Health

Authority


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SHA end of lifeSince 2009

Meeting of commissioners and lead clinicians

4 times per year meetings

Outline development plan for SHA

Division of MPET money about 1 million per year

Year 1,2009- 10 focus on advance care planning, EPCCS,

nursing home end of lifeYear 2, 2010 - 11 focus on general practice and use of

end of life tools

Year 3, 2011 12 focus on acute hospital


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Changes in place of death

South West Strategic Health

Authority

0

5

10

15

20

25

30

35

40

45

50

Hopital SWAcute

Hospital Other OwnResidence

NursingHomes

ResidentialHomes

Hospice Elsewhere

Proportion(%)dyinginplace

Place of death

Place of death SW residents 2007/08 - 2010/11

07/08 08/09 09/10 10/11


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End of Life Care North Somerset2 major initiatives

Development of advance care planning

documentation Development of electronic palliative care coordination

system


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Advance Care PlanningAdvanced wishes

Appointing someone to make decisions for you in the

future Putting your affairs in order

Making a will

Writing an advance decision

http://www.westonhospicecare.org.uk/wiki/?page=advance_planning


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Core InformationMain diagnosis

Co-existing disease,complications or details

Is patient aware of above?

RESUSCITATION STATUS

Has a DNAR/Planning Aheadform been completed?

Patient lives alone?

Does patient have an informalcarer?

Does the patient haveprofessional care?

Just in case box completed & inpt house/hospice?

Syringe driver available with

patient?End of life care pathway in use?(eg, LCP)

Primary contact

Access details


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Patient wishes for end of life care Consent based model consent to share information

with appropriate health care professionals. Present onPlanning Ahead and Register

Place where wishes can be stored. Results andoutcomes from Planning Ahead discussions

Flexible up to date and can be changed

Backed up by paperwork


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EPCCS - Visible to the broader

health community GP surgeries

Out of hours services

Ambulance serviceA and E department

Hospital teams, including specialist nurses

Hospice

Community matrons and district nurses

All can see 24 hours per day up to date patient choicesabout end of life care


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Use in GP surgeries Palliative care meetings meetings at which patients

who have end of life needs can be discussed

Does patient and carer have the right equipment forcare, is there adequate support. Has there been adiscussion about place of care and choices

Review of what went well and what needs improving

after the patient has died Not dependant on GPs making the decision to put

patients on the register


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EPCCS - Communication between

health care professionals Hospital and community teams see the same

information

Uses the expertise of a variety of specialists

The process of advance care planning can start in thehospital and get passed on to the community tocontinue

Allows for discussion of patients who might nototherwise have been discussed


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0

510

15

20

25

30

35

40

1 2 3 4 5

Percentage actual place ofdeath in 6 month intervals

from Jan 2009

home

care home

hospice

hospital


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0

10

20

30

40

50

60

70

1 2 3 4 5

Percentage patients withoutpreferred place of death, 6

month intervals from Jan 09with hospital deaths

hospital

no ppd


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0

5

10

15

20

25

30

35

40

45

home care home hospice hospital

Actual place of death with

and without ppd

No ppd

ppd


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0

10

20

30

40

50

60


Choice of preferred

place of death


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0

20

40

60

80

100

120


Percentage who died inhospital according to ppd

choice


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0

5

10

15

20

25

30

35


Percentage actual placeof death from cancer


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Compassionate Community

Networks Inspired by public health approach in Australia a nd

Kerala

Focus on improving community resource returningend of life care back into communities

Palliative care support to develop networks of family,friends and neighbours

Development of neighbourhood networks of peoplewho have supported someone who has died.


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Compassionate community

networks Completion of advance care planning on average 3

months before patient dies

Appropriate opportunity to start thinking about how

care at home can take place Considerable challenges to current culture of

communities in the modern day.

Research grant application made in combination with

Professor Tony Walter, Centre for Death and Society,University of Bath

Application made for a Big Lottery grant throughfirst phase

What Does End of Life Care Look Like Aus Jan 2012

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