2. End of Life Care in Practice www.bradford.nhs.uk/palliativecare

3. Session A –Running an effective Gold Standards Framework in practice: identifying patients; using the new template; assessment and arranging support Session B –Advance Care Planning and Discussing CPR Session C –Managing the Last Days of Life

4. National End of Life Care Strategy 2008 www.endoflifecareforadults.nhs.uk/eolc /

5. Locality end of life care registers Recommended in National End of Life Care Strategy 2008 Key objective in Bradford & Airedale End of Life Commissioning Plan

6. ‘Why create a register?’ 1.Encourage identification of more patients approaching end of life (particularly non cancer) 2.Educational tool to facilitate assessment and provision of good care 3.Encourage advance care planning with patients/families and clear documentation 4.Make information available out of hours 5.Identify deficiencies in care and inform strategic planning

7. ‘How will it work?’ User friendly End of Life template in SystmOne: Different sections, easy to navigate between Streamlines recording of key information Allows quick creation of handover forms, DNAR form, drug administration sheets etc Quick access to symptom guidelines, information leaflets etc The most important info will automatically transfer into SystmOne summary +/- national Summary Care Record (eg DNAR status, Preferred Place of Care)

8. ‘Who will record information in the template?’ District nurses GPs Community matrons and specialist nurses Specialist palliative care services, including hospital palliative care teams Other hospital staff? Access currently confined to Renal, Cardiology, Diabetes, A&E, MAU but interest is growing…

9. ‘Who will access information in the template?’ District nurses GPs Community matrons and specialist nurses Specialist palliative care services PLUS Local Care Direct Acute hospitals and Ambulance service (via Summary Care Record?) Commissioners (anonymised reporting)

10. Introducing……..

11. Three triggers for Supportive/ Palliative Care 1.The surprise question: ‘Would you be surprised if this patient were to die in the next 6-12 months?’ 2.Choice: The patient with advanced disease makes a choice for comfort care only eg refusing renal transplant 3.Clinical indicators: Specific to each of the three main end of life groups - cancer, organ failure, elderly frail/dementia

13. COPD FEV1 <30%predicted Fulfils Long Term Oxygen Therapy criteria >3 admissions in 12 months for COPD exacerbations Shortness of breath after 100 meters on the level or confined to house through breathlessness (MRC grade 4/5 ) Clinical evidence of right heart failure >6 weeks of systemic steroids for COPD in the preceding 12 months

14. Heart Failure At least two of these indicators :- ▪ Shortness of breath at rest or on minimal exertion (NYHA stage III or IV) ▪ Repeated hospital admissions with symptoms of heart failure ▪ Difficult physical or psychological symptoms despite optimal tolerated therapy

15. Renal disease At least 2 of the following: Stage V kidney disease not having dialysis Stage IV/V with deteriorating condition Stage V (eGFR<15mls/min) Symptomatic eg anorexia, nausea

16. General frailty/dementia Unable to walk/dress without assistance AND Urinary plus faecal incontinence AND Barthel score <3 AND > 10% weight loss over 6 months OR Serum Albumin < 25 g/ l

17. Parkinson’s Disease At least two of these indicators: Increasingly complex drug regime Reduced independence, need for help with daily living Condition less controlled and less predictable, with “off” periods Dyskinesias, mobility problems and falls Swallowing problems Psychiatric signs (depression, anxiety, hallucinations, psychosis)

18. Gold Standards : What is it ? Framework to improve coordination and delivery of palliative care in the community Developed in 2001 Recommended in NICE Guidance 2004 Part of NHS End of Life Care Strategy 2008 www.goldstandardsframework.nhs.uk

19. Goals of GSF Patients are enabled to have a ‘good death’ 1) Symptoms controlled 2) Preferred place of care 3) Fewer crises 4) Carers feel supported, involved, satisfied 5) Staff confidence, teamwork and communication improve

20. Gold Standards Framework C1 Communication: Register – not just a list – “surprise question”, PHCT discussion, traffic light system, Advanced Care Planning C2 Co-ordination: Identified GSF coordinator eg DN, named GP, patients know they are “Gold”, PHCT discussion C3 Control of symptoms: Education, assessment tools, anticipating problems, links with Specialists

21. C4 Continuity: OOH Handover Form, resuscitation status C5 Continued learning: Opportunities PHCT, Critical Events Review, preferred vs actual place of death C6 Carer support: National Carer’s Strategy, Risk assessment for bereavement support, Advanced Care Planning C7 Care in the dying phase : LCP, Gold Boxes, Priority Patient status

22. GSF in Primary Care Identify patients in need of palliative care, including non-cancer patients –Prognostic guidance –3 triggers Set up a palliative care register of these patients –GSF templates Meet to discuss, review and plan care for these patients –Update OOH form, PPC, DNA CPR, ADRT –Discuss symptom control, quality of life, holistic care –Significant event analysis

23. How to run an effective Gold Standards meeting Large/small practices require different format Consider named coordinator Traffic lights Discuss: –Current patients (7 C’s) –Deaths –Adding new patients –Developments in palliative care eg policy –Can also be opportunity for education (SPC) –Support for one another

24. Challenges??

25. If you are already doing this.... The next step: –Continue using GSF, review regularly, and mainstream as a practice protocol. –Include more non-cancer patients on the register, to approach the predicted prevalence figures. –Audit regularly. –Extend to further levels of GSF eg Advance Care Planning, GSF in Care Homes etc.