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 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 Earlier 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 control Mrs 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 assessed Planning -regular review and support All 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 1 Increasing decline 2 Last days 3 After death Care Register LPC Advance Care Plan- PPC Advance Care Plan- PPC & review Review PPC- ? Fast Track CC home to die Carer needs assessment Prognosis communicated DS1500 Assessment, care planning and review DNAR Assessment, care planning and review DNAR Assessment, care planning and review Just-in-case drugs Communicate with GP, OOH, D/N, NWAS Communicate with OOH, GP, D/N, NWAS Inform GP Joy Wharton Jayne Denney 2011

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 and their family do wish to happen to them Can be useful to clinicians in planning a patient’s individual care Not legally binding May also need Advance Directive and DNAR eg PPC Formalises what patients do not wish to happen to them Legally binding document Related 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 Carers UK website-

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 preferences Symptoms Quality of life

Just in case drugs-MBHT& Cumbria Morphine 2.5-5mg sc prn hourly (unless taking opioids already) Midazolam 2.5-5mg sc prn hourly Cyclizine 50mg sc prn 8 hourly Hyoscine hydrobromide 0.4mg sc prn 4 hourly Lancashire Community: Diamorphine, Levomepromazine, glycopyrronium, midazolam

Communicate with all who need to know OOH Message in a bottle DN GP Into and out of hospital NWAS Don’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