Appendix 1 -Summary of palliative care patients (modified SCR1 form from Gold standards Framework)

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1 Appendix 1 -Summary of palliative care patients (modified SCR1 form from Gold standards Framework) Name of patient/ Name of carer Diagnosis (+code) DNAR form Y/N GP DN Problems/ Concerns Anticipated needs including anticiaptory drugs) Information given/carer issues/ Discussed with Relatives Y/N DS 1500 date Macmillan Nurse/ CNS Hospice/ SPC OUT OF HOURS (OOH) Handover Form Date sent Preferred place of death stated + date Actual place death + date Bereavement Care Crisis Events/ Notes

2 Appendix 2 READ codes NHS Worcestershire EOL LES Specification as at April 2011 Palliative Care Register ZV57C Palliative care (suggested in previous End of Life LES, and is preferred code to use) Below are the QoF data set codes that will also be picked in the data searches:- 1Z01. Terminal illness late stage 2JE.. Last days of life 8BA2. Terminal care 8BAP. Specialist palliative care 8BAS. Specialist palliative care treatment daycare 8BAT. Specialist palliative care treatment outpatient 8BAe. Anticipatory palliative care 8BJ1. Palliative treatment 8CM1. On gold standards palliative care framework 8CM10 GSF supportive care stage 1 - advancing disease 8CM11 GSF supportive care stage 2 - increasing decline 8CM12 GSF supp care stage 3 - last days: category C - weeks prognosis 8CM13 GSF supp care stage 3 - last days: category D - days prognosis 8CM14 GSF supp care stage 3 - last days: category B - months prognosis 8CM4. Liverpool care pathway for the dying 8CME. Has end of life advanced care plan 8H6A. Refer to terminal care consult 8H7L. Refer for terminal care 8H7g. Referral to palliative care service 8HH7. Referred to community specialist palliative care team 9EB5. DS 1500 Disability living allowance (terminal care) completed 9Ng7. On end of life care register Preferred Place of Care 94Z1. Preferred place of death: home 94Z2. Preferred place of death: hospice 94Z3. Preferred place of death: community hospital 94Z4. Preferred place of death: hospital 94Z5. Preferred place of death: nursing home 94ZC. Preferred place of death: care home Advance Care Planning 38De. Gold standards framework surprise question 1R... Resuscitation status 1R0.. For resuscitation 1R1.. Not for resuscitation (1R may be useful to record patient refused to discuss resuscitation, together with a comment in the free text box) Out of Hours 9e0.. GP out of hours service notified Key Worker 9NNZ. Has end of life care pathway key worker

3 Use of Just-in Case Boxes (anticipatory prescribing) 8BMM. Issue of palliative care anticipatory medication box Care of the Dying 8CM4. Liverpool care pathway for the dying 8CME. Has end of life advanced care plan Read Codes for Carers 918A. Carer 918m. Carer of a person with a terminal illness 671E. Discussed with carer 13Hc. Bereavement 8O81. Bereavement support Read Codes for patients in Residential Accommodation 13F61 Lives in a nursing home 13FK. Lives in a residential home Read Codes following death Patient died - to record place Patient died at home Patient died in nursing home Patient died in resid.inst.nos Patient died in hospital 949A. Patient died in hospice 949B. Patient died in community hospital 949C. Patient died in GP surgery 949D. Patient died in care home 949Z. Patient died in place NOS (949Z. is suggested as an option but you are requested to use only as last resort)

4 Appendix 3- Reflective Practice Guidance: It has shown to be good practice to review all deaths on the palliative care register to ensure a consistently high standard of care is given and to pick up any recurrent problems. This method is used both by GSF and local specialist palliative care teams when reviewing deaths. In most cases the review can be brief simply using the following questions: 1. What went well? 2. What didn t go so well? 3. What could have been done better? See further guidance on GSF website Full Guidance on Using QoF to Improve Palliative/End of Life Care in Primary Care. Any issues which are highlighted through this process that are outside the control of the practice e.g. regarding another provider or service or could be considered a county wide issue should be reported to the PCT, via Karen Hunter (Karen.hunter@nhs.net) or via the GSF Facilitators. These issues will then be forwarded on to the appropriate member of staff at the PCT e.g. commissioner/end of life programme lead etc. Appendix 4.no longer required (advice on use of Liverpool care pathway) Appendix 5 Guidance on GSF Surprise Question The surprise question Would you be surprised if this patient were to die in the next 6-12months - an intuitive question integrating co-morbidity, social and other factors. If you would not be surprised, then what measures might be taken to improve their quality of life now and in preparation for the dying stage. The surprise question can be applied to years/months/weeks/days and trigger the appropriate actions. The aim is to enable the right thing to happen at the right time eg if days, then begin a Care Pathway for the Dying. Some clinicians find it easier to ask themselves Would you be surprised if this patient were still alive in 6-12 months? Appendix 6 BMA summary of mental capacity act (attached separately)

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6 Appendix 7 Needs Based Coding Form (locally adapted) A = YEARS PROGNOSIS + ADJUSTMENT Identify patients for GSF register with cancer diagnosis and extending to other long term diagnosis conditions, including care home and care home with nursing residents. Holistic assessment of need by MDT. Review patients every 3 months depending on changes. Fill out OOH form for WMAS and OOH GP service. Discuss if appropriate DNAR and ACP. Introduce & make aware to other members of MDT team e.g. DN, CNS etc. Identify patient with key worker. B = MONTHS PROGNOSIS PROACTIVE REVIEW AND ASSESSMENT If ACP already in place review if not discuss and record. Review MDT holistic assessment of need for e.g, physiological, symptom control, anticipatory prescribing, just in case box; financial need, DS1500, continuing healthcare, attendance allowance. Spiritual and social needs. Fill out OOH form if not done so already and review and update OOH form if previously done. Review patient monthly. Patient to receive monthly visit from DN s, CNS or GP s. Assess needs of carers / family / friends. C = WEEKS PROGNOSIS PREPARING FOR FINAL STAGE 2 weekly visits by member of MDT team to assess needs and any anticipatory prescribing / symptom control. Proactive review of need. Regular communication with MDT regarding changes in patients condition. ACP reviewed / discussed / updated. Update OOH form with any changes to both OOH GP service and WMAS. Increase contact with family/carers/friends.?need for hospice at home or night sitting service Fast Track CHC funding if not already done. Preferred place of care clearly identified and documented. Any ACP decisions respected. D = DAYS PROGNOSIS PREPARATION FOR DEATH Diagnosis of the dying phase. Daily contact by DN s / GP with daily review. Use of LCP Contact with family, friends and carers discuss prognosis and provide some pre-bereavement care. Symptom control / anticipatory prescribing possible use of syringe driver Update OOH form Assess carer?need for hospice at home or night sitting service E = AFTERCARE UNDERSTANDING AND SUPPORT Bereavement support for carers / family / friends. Follow the practice death flow chart. SEA. ADA. Support for staff involved with care of patient clinical supervision.

7 Appendix 8 Flow Chart Following the Death of a Patient FLOW CHART FOLLOWING THE DEATH OF A PATIENT 1 The first person who receives the information that a patient has died must inform surgery staff and all doctors, including duty doctor, that patient has died. Write in day book / white board / electronic system. 2.. To update patient computer / paper records indicating patient has died (according to practice protocol) to include all disease / palliative care registers as well. Add a bereavement alert to the records of any patient s listed in the deceased patient s next of kin details. 3.. Will then look for any pre booked appointments for e.g.; hospital appointments, hospital transport, hospital pharmacy, choose and book, allied health care professional appointments, physiotherapists, occupational therapists. Any other outside private agencies. Any scheduled home visits by practice. Any re issue of repeat prescriptions. Any disease monitoring / prevention invitations. 4.. Will then look for and contact all other professionals / agencies involved with the deceased patients care; OOH, WMAS (via designated address), Clinical Nurse Specialist / Macmillan Nurse, Community Psychiatric Nurse, District Nursing Service, Coronary Heart Failure Nurses, phlebotomists, social services, community matrons, any specialist nurses involved for e.g. Neurology or Parkinson s. COPD met office weather alert system. N.B. If it is the death of a child then contact the health visiting team and the community health children s team. 5 Archive patients records according to practice protocol. Send out practice bereavement leaflet if appropriate, offering advice on where next of kin / relatives / friends can access support. N.B; the blank space is to fill in your designated person within the practice for each section, whether this is administrative staff or your district nurses who can then sign off on the sheet below once completed. IT IS THE AIM FOR THIS FLOW CHART TO BE WITHIN 24 HOURS OR AS CLOSE TO THIS AS PRACTICAL

8 DATE PATIENTS NAME SECTION 1 SECTION 2 SECTION 3 SECTION 4 SECTION 5

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