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Dying at home

Dying at home. Practical aspects for the GP. Birth is a miracle; death is a mystery. Neither fit easily into a biomedical model. Home birth. Not really planned for a labour “Thought we would see when the time comes” not sure how to diagnose labour, anyway

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Dying at home

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  1. Dying at home Practical aspects for the GP Dr Eileen Palmer West Cumbria Hospice at Home

  2. Birth is a miracle; death is a mystery. Neither fit easily into a biomedical model. Dr Eileen Palmer West Cumbria Hospice at Home

  3. Home birth • Not really planned for a labour “Thought we would see when the time comes” • not sure how to diagnose labour, anyway • not discussed care environment/suitability, even with midwife • no delivery pack/pain relief in the home Dr Eileen Palmer West Cumbria Hospice at Home

  4. Home birth • the care environment • the lay carers • the professional carers (the midwife) • the safety net • anticipating ‘planning for common problems rapid, easy access to: • :medication (including out of hours) • equipment (including out of hours) • medical and nursing staff (including out of hours) • information and support for patient • and carers Dr Eileen Palmer West Cumbria Hospice at Home

  5. Home death • Not really planned where the death might be. “Thought we would see when the time comes” • not sure how to diagnose dying, anyway • not discussed care environment/suitability, even with District Nurse • no equipment/ basic medication/pain relief in the home Dr Eileen Palmer West Cumbria Hospice at Home

  6. Home Death • the care environment • the lay carers • the professional carers (the district nurse) • the safety net • anticipating and planning for common problems rapid, easy access to: • :medication (including out of hours) • equipment (including out of hours) • medical and nursing staff (including out of hours) • information and support for patient and carers Dr Eileen Palmer West Cumbria Hospice at Home

  7. Home death • Decision around the place of death • Diagnosing that the patient is dying • Anticipating and planning for common problems at home • Prescribing and ensuring access to core drugs • Ongoing nursing care • Communication/out of hours care Dr Eileen Palmer West Cumbria Hospice at Home

  8. Deciding on a home death • The patient’s wishes • the care environment • the carers • the professional support: Dr Eileen Palmer West Cumbria Hospice at Home

  9. The care environment • A telephone (or mobile) • facilities for personal care • an intercom/baby monitor/handbell for attracting attention • a bed • (safety for staff) Dr Eileen Palmer West Cumbria Hospice at Home

  10. The carers Do they: • exist? • feel able to do it and • have adequate physical strength • have adequate emotional resource • Have access to practical help. • Know what help is available and how to access it Dr Eileen Palmer West Cumbria Hospice at Home

  11. The professional support • District nurse • Marie Curie nursing services • Macmillan carer schemes • Hospice at Home schemes • Macmillan nurses • safety nets Dr Eileen Palmer West Cumbria Hospice at Home

  12. Dr Eileen Palmer West Cumbria Hospice at Home

  13. Dr Eileen Palmer West Cumbria Hospice at Home

  14. Dr Eileen Palmer West Cumbria Hospice at Home

  15. Dr Eileen Palmer West Cumbria Hospice at Home

  16. Goals of care change A carer’s story Dr Eileen Palmer West Cumbria Hospice at Home

  17. Goals of care change for the dying patient: • to die in a place of their choice (usually home) • to be free of unpleasant symptoms • dignity • closeness with and support of family • spiritual care/peace of mind Dr Eileen Palmer West Cumbria Hospice at Home

  18. Goals of care change for the medical and nursing team • Discontinuing non essential care (including medication) • easy access to comfort care (including medication) • care of family unit • attention to spiritual care needs Dr Eileen Palmer West Cumbria Hospice at Home

  19. Anticipating and planning for common problems at home (1) • Loss of mobility • Unable to transfer safely • Loss of ability to eat • Loss of ability to drink • Loss of ability to swallow Dr Eileen Palmer West Cumbria Hospice at Home

  20. Anticipating and planning for common problems (2) • Delirium and agitation • Pain • Vomiting • Dyspnoea • Excess respiratory secretions • Changing breathing pattern Dr Eileen Palmer West Cumbria Hospice at Home

  21. EQUIPMENT Rapid access to: bed/mattress commode catheterisation pack intercom syringe driver nebuliser portable suction NURSING CARE comfort care only care of eyes and mouth personal care for dignity continence needs symptom monitoring/medication carer support Nursing care Dr Eileen Palmer West Cumbria Hospice at Home

  22. Medical care: discontinue non essentials • XR’s, blood tests, IV infusions • explain absence of need for CPR/calling an ambulance at point of death • most medication (including anti-anginals, anticoagulants, anti-hypertensives, anti-diabetics, etc. etc.) Dr Eileen Palmer West Cumbria Hospice at Home

  23. Medical care: Continue essentials • CONTINUE: Frusemide for heart failure (give as S/C injection) Anticonvulsants replace with midazolam 30mg/24 h. Increase to 40mg, then 60mg if still pre-ictal. Have midazolam/diazepam in the home. Dr Eileen Palmer West Cumbria Hospice at Home

  24. Medical care: Prescribe the core four • An analgesic: Rx DIAMORPHINE • An anti-emetic: Rx CYCLIZINE • An anti-secretory: Rx HYOSCINE HYDROBROMIDE • A sedative: Rx MIDAZOLAM Dr Eileen Palmer West Cumbria Hospice at Home

  25. Prescribing the core four Dr Eileen Palmer West Cumbria Hospice at Home

  26. What about syringe drivers? PRO-ACTIVE PROVISION or rapid access: • in the home • in the Cuedoc car • in a “Palliative care bag PRO-ACTIVE PRESCRIBING • not a panacea Dr Eileen Palmer West Cumbria Hospice at Home

  27. Prescribing for the syringe driver: PAIN • On no oral opioid Diamorphine 10mg/24h • On oral morphine Divide 24h morphine dose by 3 = mg diamorphine/24h • On fentanylLEAVE THE PATCH ON. Prescribe additional diamorphine using the guideline • On other opioids Refer to the conversion chart/contact the specialist team Dr Eileen Palmer West Cumbria Hospice at Home

  28. Prescribing for the syringe driver:PAIN PRESCRIBE ADDITIONAL PRN PAIN RELIEF: RX one sixth of 24h diamorphine dose stat, then prn for pain. (The syringe driver takes 4h to build up a serum level) Dr Eileen Palmer West Cumbria Hospice at Home

  29. Prescribing for the syringe driver:VOMITING Rx cyclizine 150mg/24h (or Nozinan 12.5mg/24h) Dr Eileen Palmer West Cumbria Hospice at Home

  30. Prescribing for the syringe driver:XS SECRETIONS Rx hyoscine hydrobromide 1.6-2.4mg/24h or glycopyrrollate 0.8-1.2mg/24h) (positioning/suction) Dr Eileen Palmer West Cumbria Hospice at Home

  31. Prescribing for the syringe driverAGITATION/RESTLESSNESS Rx Midazolam 5-30mg/24h (Check bedsheets bladder pain control) Dr Eileen Palmer West Cumbria Hospice at Home

  32. The golden rules for syringe drivers: • Divide by three • Remember loading dose and prn’s • DON’T remove the patch • DON’T use the boost button • DON’T add extra drugs to a driver that is running Dr Eileen Palmer West Cumbria Hospice at Home

  33. Mixing drugs in syringe drivers: • Diamorphine • cyclizine • haloperidol • metoclopramide • levomepromazine • hyoscine HBr • midazolam USUALLY FINE Dr Eileen Palmer West Cumbria Hospice at Home

  34. Watch out for problems with: • Cyclizine once diamorphine dose exceeds 200mg • Ketorolac • Dexamethasone Dr Eileen Palmer West Cumbria Hospice at Home

  35. Out of hours care for dying patients Tom’s story Dr Eileen Palmer West Cumbria Hospice at Home

  36. Out of hours care • Two thirds of the week is “out of hours” • 105.5 hours /week vs 52.5 hours/week “in hours” • a weekend (1830 Friday-0800 Monday) may need 10 shifts of doctor (14 For Bank hols) Dr Eileen Palmer West Cumbria Hospice at Home

  37. Out of hours care Challenges accessing: • Basic patient information • District Nurses • Specialist nurses • Other specialist resources • equipment/syringe drivers • pharmacists • medication Dr Eileen Palmer West Cumbria Hospice at Home

  38. Out of hours palliative care for the dying • Effective identification of dying patients by the practice • effective handover system from “in-hours” to “out of hours” care (and back again) • Out of hours doctors/ nurses are trained to care for dying patients • Out of hours service provider is properly equipped • PRO-ACTIVE “IN HOURS” CARE: CRISIS AVOIDANCE Dr Eileen Palmer West Cumbria Hospice at Home

  39. Dr Eileen Palmer West Cumbria Hospice at Home

  40. Accessing drugs out of hours (1) • The commonest drugs needed out of hours are: • Diamorphine 10mg, 30mg and 100mg injection • Cyclizine 50mg injection • Haloperidol 5mg injection • Metoclopramide 10mg injection • Levomepromazine (Nozinan) 25mg injection • Midazolam 10mg injection • Hyoscine hydrobromide 400mcg injection (or glycopyrrollate 0.4mg/2ml injection) • Water for injections Dr Eileen Palmer West Cumbria Hospice at Home

  41. Accessing drugs out of hours (2) • Less commonly used are • Dexamethasone 20mg/5ml injection • Diazepam rectal 10mg or 10mg/2ml IV injection • Ketorolac 30mg/ml injection • Oxygen Dr Eileen Palmer West Cumbria Hospice at Home

  42. Accessing drugs out of hours (3) • “emergency pack” prescribed and left in the home • named community pharmacists carrying a stock (and providing rapid access on-call) • Basing emergency packs in community hospitals, hospices, OOH service provider bases. • Carrying a “palliative care kit” in the OOH service car Dr Eileen Palmer West Cumbria Hospice at Home

  43. Spiritual care • Kindness and compassion • Deep listening • involving spiritual care workers appropriately • looking after ourselves and each other Dr Eileen Palmer West Cumbria Hospice at Home

  44. Home Dr Eileen Palmer West Cumbria Hospice at Home

  45. To summarise • BE PROACTIVE • PRESCRIBE THE CORE FOUR • for every 5 minutes talking, spend 10 minutes listening and 15 minutes ensuring good communication across teams • THIS IS REAL MEDICINE Dr Eileen Palmer West Cumbria Hospice at Home

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