End of Life Tools

Dr Angela DoddMacmillan GP Facilitator

End of Life Tools

• GSF

• LCP

• Advance Care Planning

• PPC

What are we trying to achieve ?

• Patients enabled to live with dying well, have a “good death” in the preferred place with fewer crises

• Carers feel supported,involved,empowered and satisfied with care

• Staff confidence, teamwork, satisfaction, communication and co-working with specialists improved

Principles of a good death ?• For family and carers to be aware when death is

coming, and to understand what can be expected. • To anticipate problems and plan care to avoid

crises.• Dignity and privacy to be respected • To maximise pain relief and symptom control • To plan where death should occur, avoiding

transfer/admission to a different environment unless there is a valid reason

• To maximise access to information and expertise of whatever kind is necessary

Principles of a good death ?• To respect the patient’s religious needs, and have

access to any spiritual or emotional support required for all concerned

• To have access to good palliative care in any location

• To have the patient’s best interests at heart in all care planning

• To discuss in advance who wishes to be present and who shares the end

• To have time to say goodbye • Not to have life prolonged pointlessly

Steps in planning care

Identify

Assess

Plan

Disease Trajectories

• Cancer – rate of decline is relatively good prognostic indicator

• Organ/System Failure – may have been told death is imminent many times

• Frailty/Dementia -

Triggers for ‘End Stage’ Care

• The Surprise Question

• Team Decision – for comfort care only not ‘curative’ treatment

• Clinical Indicators

After Death Audit – learn from the question ‘Did we identify the time to change gear appropriately?’

Average GP Workload

• 20 deaths / year– 1-2 Sudden Death– 5 Cancer Deaths– 6 Organ Failure– 7-8 Dementia

General Predictors

• Multiple Co-morbidities

• Weight Loss - >10% over 6 months

• General Physical Decline

• Serum Albumin <25 g/l

• Reducing performance status

Dementia

• Unable to walk without assistance and

• Urinary and Faecal Incontinence and

• No consistent meaningful speech and

• Unable to dress without assistance

• Barthel Score < 3

• Reduced ability in activities daily living

• PLUS:

DementiaPLUS any one of:10% wt loss last 6M with no other causePyelonephritis or UTISerum Albumin < 25g / lSevere pressure sores (Stages III / IV)Recurrent feversReduced oral intakeAspiration pneumonia

Prognostic Bands

• Years Prognosis

• Months Prognosis – Benefits DS1500

• Weeks Prognosis – Continuing Care

• Days Prognosis

Palliative Care Defined

“Palliative care is the active total care of patients whose disease is not responsive to curative treatment.”

World Health Organisation 1990

Palliative Care• Affirms life and regards dying as a normal process• Neither hastens nor postpones death• Provides relief from pain and other symptoms• Integrates the psychological and spiritual aspects of

patient care• Offers a support system to help patients live as

actively as possible until death• Offers a support system to help the family cope

during the patient’s illness and in their own bereavement

Dr. Keri Thomas

Obstacles in Community Palliative Care

• poor co-ordination of round-the-clock care

• poor communication

• difficult symptom control

• inadequate support for carers

Needs of Patients and Carers

• physiological– good symptom control

• security, safety and support – care customised to individual needs– planning resulting in fewer unexpected events– confidence and trust– information and choice

Aim

• to improve the organisation and quality of palliative care in the community

• to improve “generalist” palliative care and so better dovetail with specialist palliative care

The 7 C’s

• communication

• co-ordination

• control of symptoms

• continuity

• continued learning

• carer support

• care of the dying

C1 - Communication

• supportive care register– identify palliative care patients– central information source

• regular MDT meetings– inform and share– anticipate needs

• with patient and carer– advanced care planning eg. PPOC

C2 - Co-ordination

• co-ordinator often practice manager or district nurse– maintain register– arrange meetings– liaise with facilitator

C3 - Control of Symptoms

• physical, psychological, social, practical, spiritual

• formally assessed, recorded, discussed and acted on

• focus on patient’s agenda

C3 - Pepsi Cola Checklist

• hysical– symptom control

• motional– adjustment, depression

• ersonal– spiritual care

• ocial support– services, benefits

• nformation and communication

– between professionals,to and from patient

• ontrol– choice, dignity, preferred

place of death

• ut of hours– continuity

• ate– terminal care

• fterwards– bereavement care, audit

P

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P

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I

C

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C4 - Continuity

• out of hours– hand-over form

• dovetailing with specialists– hand-held record

C5 - Continued Learning

• specific topics– eg. symptom control

• local or national workshops

• audit

• significant event review

C6 - Carer Support

• practical– lifting and handling, equipment, sitters, respite

• emotional– feel listened to– allowed to express concerns– valued as part of the team

• bereavement

C7 - Care of the Dying

• Recognition of the dying phase

C7 – Care of the Dying

• Recognition of the dying phase

• Anticipatory Prescribing– Just in Case box

Four key drugs

Pain Diamorphine

Agitation / restlessness Midazolam

Nausea / vomiting Levomepromazine

Rattly breathing Hyoscine butylbromide

C7 – Care of the Dying

• Recognition of the dying phase

• Anticipatory prescribing

• Use of care pathway– Eg. LCP

LIVERPOOL CARE PATHWAY

• Integrated care pathway

• Last hours and days of life

AIM

• ‘good death’

• Enable us to facilitate a ‘good death’• Prof John Ellershaw• Liverpool University Hospital and Marie

Curie• To transfer hospice model of care to other

care settings

National Cancer Plan Sept 2000

• ‘Care of dying must improve to level of the best’

Criteria- 2 of following

• Bedbound• Semi comatose• Taking sips of fluid only• Unable to take oral drugs

• Team Decision • Beware reversible causes• Difficult in dementia

Why ?

• Provides guidance on care• Checklist , ensure nothing missed• Benchmarking to prove quality of care• Collect data• Auditable• Continuous improvement• Replaces all other documentation

Where and who?

• Applicable in hospital, hospice, care home, community setting

• Multiprofessional

• Nurse led

What for?• Provides guidance on care• Comfort measures• Anticipatory prescribing• Discontinuation of

inappropriate interventions• Communication with patient,

family and health care team• Psychological and spiritual

welfare• Family support• bereavement

Benefits

• Evidence based framework• Recommendation in NICE for supportive

and palliative care• Empowers all to provide high quality of

care• Demonstrates outcomes• Able to document variance• Improves communication

Barriers

• More paperwork!!!!!!

• Resistance by doctors and nurses

• Inappropriate placement

• medicolegal

Paperwork

• Tick boxes remove need to write

• IINITAL ASSESSMENT-2sides A4

• RECORD OF REVIEW- 4 hrly or appropriate interval• 4 sides of A4 for 6 reviews ie 1 day

• VARIANCE SHEETS• SYMPTOM CONTROL GUIDE• AFTER DEATH

KEY MESSAGES

• Empowering us to provide a good death

• Straightforward

• Simplification of paperwork

• www.lcp-mariecurie.org.uk

Palliative Care Resources

• Macmillan Nurses/GP Mac Fac

• Hospice

• www.goldstandardsframework.nhs.uk

• White books

• Palliative Care Helplines

• www.palliativedrugs.com

Palliative Care Education

• HEAD – Knowledge, clinical competence

‘What to do’

• HANDS – process, organisation, systems

‘How to do it’

• HEART – compassion, caring, human side

‘Why’ Experience of care

Palliative Care Education

• Macmillan Nurses

• Hospice

• Macmillan GPs / Pain Days/ Symptom

• Macmillan eg Foundations in Palliative Care for Care Homes

• Diploma/Certificate Course

• University / Hospital Conference