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  1. End of Life Tools Dr Angela Dodd Macmillan GP Facilitator

  2. GSF LCP Advance Care Planning PPC End of Life Tools

  3. 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

  4. 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

  5. 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

  6. Steps in planning care Identify Assess Plan

  7. 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 -

  8. 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?’

  9. Average GP Workload • 20 deaths / year • 1-2 Sudden Death • 5 Cancer Deaths • 6 Organ Failure • 7-8 Dementia

  10. General Predictors • Multiple Co-morbidities • Weight Loss - >10% over 6 months • General Physical Decline • Serum Albumin <25 g/l • Reducing performance status

  11. 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:

  12. Dementia PLUS any one of: 10% wt loss last 6M with no other cause Pyelonephritis or UTI Serum Albumin < 25g / l Severe pressure sores (Stages III / IV) Recurrent fevers Reduced oral intake Aspiration pneumonia

  13. Prognostic Bands • Years Prognosis • Months Prognosis – Benefits DS1500 • Weeks Prognosis – Continuing Care • Days Prognosis

  14. Palliative Care Defined “Palliative care is the active total care of patients whose disease is not responsive to curative treatment.” World Health Organisation 1990

  15. 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

  16. Dr. Keri Thomas

  17. Obstacles in Community Palliative Care • poor co-ordination of round-the-clock care • poor communication • difficult symptom control • inadequate support for carers

  18. 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

  19. 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

  20. The 7 C’s • communication • co-ordination • control of symptoms • continuity • continued learning • carer support • care of the dying

  21. 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

  22. C2 - Co-ordination • co-ordinator often practice manager or district nurse • maintain register • arrange meetings • liaise with facilitator

  23. C3 - Control of Symptoms • physical, psychological, social, practical, spiritual • formally assessed, recorded, discussed and acted on • focus on patient’s agenda

  24. 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 C3 - Pepsi Cola Checklist C P E O P L S A I

  25. C4 - Continuity • out of hours • hand-over form • dovetailing with specialists • hand-held record

  26. C5 - Continued Learning • specific topics • eg. symptom control • local or national workshops • audit • significant event review

  27. 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

  28. C7 - Care of the Dying • Recognition of the dying phase

  29. C7 – Care of the Dying • Recognition of the dying phase • Anticipatory Prescribing • Just in Case box

  30. Pain  Diamorphine Agitation / restlessness  Midazolam Nausea / vomiting  Levomepromazine Rattly breathing  Hyoscine butylbromide Four key drugs

  31. C7 – Care of the Dying • Recognition of the dying phase • Anticipatory prescribing • Use of care pathway • Eg. LCP

  32. LIVERPOOL CARE PATHWAY • Integrated care pathway • Last hours and days of life

  33. 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

  34. National Cancer Plan Sept 2000 • ‘Care of dying must improve to level of the best’

  35. 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

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

  37. Where and who? • Applicable in hospital, hospice, care home, community setting • Multiprofessional • Nurse led

  38. 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

  39. 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

  40. More paperwork!!!!!! Resistance by doctors and nurses Inappropriate placement medicolegal Barriers

  41. 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

  42. KEY MESSAGES • Empowering us to provide a good death • Straightforward • Simplification of paperwork • www.lcp-mariecurie.org.uk

  43. Palliative Care Resources • Macmillan Nurses/GP Mac Fac • Hospice • www.goldstandardsframework.nhs.uk • White books • Palliative Care Helplines • www.palliativedrugs.com

  44. 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

  45. 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