End of Life Care Framework

Jayne Denney

Joy Wharton

2011

When it goes wrong……•Care of Mr Barker age 78 with COPD:•Reactive care before using GSF - 2000 Practice responding to occasional requests. Symptoms worsening prompts action.•Less patient choice or control End of life never discussed, Mr Barker just worried about it but couldn’t ask the questions he need to. No one asked what was important to him or discussed likely course of illness and what to expect.•Care felt haphazard Ad hoc visits and duplication eg Nurse and GP visit same day. No future plan discussed Advice only given if they asked- his wife felt too frightened and didn’t always know what to ask for.•Wife struggling to cope unsupported When Mr Barker became unwell at a weekend, everyone was upset and panicked. A 999 call led to A&E - 8 hour wait on trolley, no notes available. He died on the ward. His wife didn’t realised he was this poorly and was not there.

A system to improve the organisation and quality of care of patients and carers in the last year of life

When it goes right….Care of Mrs Smith, 81 with Heart Failure:Proactive care with GSF - 2009Earlier identification by the practice as needing priority care and added to GSF Supportive care register. Early Assessment of stage of illness and likely needs.More patient choice and controlMrs Williams felt in control with an Advance Care Plan. End of life discussions offered sensitively so she was able to ask the awkward questions and felt reassured. Knew what might happen and what to do if it did. Holistic needs assessedPlanning -regular review and supportAll the practice team including receptionists knew that she needs priority care. All aspects of care considered at team meetings. Possible future needs anticipated including out of hours care (handover form) personalised guidance (Home Pack), hospital informed (Passport information), carers support (information, training & respite) & drugs at home.Family and Carers are supported with fewer crises.Admission was avoided. Mrs Williams died at home as she had wanted, with her family around her.

The Patient’s Journey

Instead of focussing on the patient’s current needs and providing care on a day to day basis,

coding patients benefits anticipatory planning and delivery of care

NW EoLC Pathway

Tools and elements of care at End of Life

Care Register (GSF) Advance Care Plan-

Preferred Priorities of Care (PPC)

Assessment, care planning and review

Carer needs assessment DS1500 DNAR Just in case drugs LCP Discharge information

Communication:

Prognosis

Plan of care

Patient and carers wishes

(To all who need to know!)

Connect all 9 dots by drawing 4 straight continuous lines, without lifting the pen off the paper or retracing a line.

You have 5 minutes!

End of Life Pathway Advancing

disease 1Increasing

decline 2Last days

3After death

Care Register Care Register LPC

Advance Care Plan- PPC

Advance Care Plan- PPC & review

Review PPC-

? Fast Track CC home to die

Carer needs assessment

Carer needs assessment

Carer needs assessment

Prognosis communicated

Prognosis communicated

Prognosis communicated

DS1500

Assessment, care planning and review

DNAR

Assessment, care planning and review

DNAR

Assessment, care planning and review

Just-in-case drugs Just-in-case drugs

Communicate with GP, OOH, D/N, NWAS

Communicate with OOH, GP, D/N, NWAS

Inform GPJoy WhartonJayne Denney2011

Register

A recent snapshot study of end of life care in the community (502 GP

practices in 15 PCTs) concluded: ‘Patients on the register received more proactive,

better co-ordinated care than those not on the register, and cancer patients were well represented on the registers and more likely to receive good end of life care, in contrast to non-cancer patients’

(Thomas, Clifford and de Silva 2011)

Advance Care Planning

Advance Statement

Advance Decision

Formalises what the patient andtheir family do wish to happen to themCan be useful to clinicians in planninga patient’s individual careNot legally binding May also need Advance Directive and DNAReg PPC

Formalises what patients do not wish tohappen to themLegally binding documentRelated to capacity of decision making, eg ADRT

Advance Care Planning

Carers Assessment

If a person provides care for a relative or friend they may be entitled to an assessment of their own needs

It is an assessment of what might help the carer to help the patient: equipment, financial benefits, homecare, meal delivery, regular breaks, respite care, counselling, carer groups

CarersLine tel 0808 808 7777Carers UK website- http://www.carersuk.org/Home

Prognosis……

A focus on patient’s increasing needs rather than accurately predicting death

Making sure that everything is ready, just in case the patient deteriorates rapidly

Benefits for the patient:There are special rules to help terminally ill people access certain benefits quickly and easily (DS1500)

Disability Living Allowance, if they are under 65 and need help with personal care and/or getting around

Attendance Allowance, if they are 65 or over and need help with personal care

Employment and Support Allowance, if they are under state pension age and have an illness or disability which affects their ability to work

Blue Badge Carer's Allowance Carers may be entitled to receive Carer's Allowance

Financial Benefits

A DNAR decision relates ONLY to CPR and NOT to any other interventions

Chance of survival in patients at level 3 is less than 4%

Likelihood of success is influenced by declining performance status,presence of co-morbidities, pneumonia, pre-existing hypoxia, sepsis,

renal and heart failure

Assessment, Care Planning and Review

In the context of EoLC: uncertain prognosis, crises, possible current and future needs

Holistic assessment-concerns led Patient’s priorities, needs and preferencesSymptomsQuality of life

http://www.endoflifecareforadults.nhs.uk/publications/holisticcommonassessment

Just in case drugs-MBHT& Cumbria

Morphine 2.5-5mg sc prn hourly (unless taking opioids already)

Midazolam 2.5-5mg sc prn hourlyCyclizine 50mg sc prn 8 hourlyHyoscine hydrobromide 0.4mg sc prn 4

hourlyLancashire Community:

Diamorphine, Levomepromazine, glycopyrronium, midazolam

Communicate with all who need to know

OOHMessage in a bottleDNGPInto and out of hospitalNWASDon’t forget the patient and carers!

Fast track continuing care

The Fast Track Tool is used to gain immediate access to funding when an individual needs an urgent package of care on the basis of a rapidly

deteriorating condition that may be entering a terminal phase

This replaces the need for a Decision Support Tool The practitioner must be knowledgeable about the individuals health

needs and be able to provide reasons for the fast tracking decision There are no time limits specified but the aim is to enable individuals to

be in their preferred place of care as soon as possible

http://www.endoflifecareforadults.nhs.uk/assets/downloads/supportsheet14_1.pdf