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Learning Session 3

Practice Support Program End of Life. Learning Session 3. Acknowledgements.

francesca-roberts
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Learning Session 3

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  1. Practice Support Program End of Life Learning Session 3

  2. Acknowledgements • End of Life Practice Support Program Committees:Dr. Cathy Clelland, Chair, Sheila Balson, Andy Basi, Sherry Bar, Dr. Doris Barwich, Dr. Clifford Chan-Yan, Louise Donald, Dr. Ian Courtice, Dr. Romayne Gallagher, Dr. Neil Hilliard, Pamela Hinada, Dr, Bruce Hobson, Dr. Marcus Hollander, Judy Huska, Pauline James, Dr. Marnie Jacobsen, Dr. Helena Kadlec, Liza Kallstrom, Dr. Douglas McGregor, Dr. Chris Rauscher, Pat Porterfield, Della Roberts, Christina Southey • BC Hospice Palliative Care Association Learning Centre for Palliative Care: Hospice Palliative End-of-Life Primary Care Provider Education Project • Fraser Health End of Life Care Program: Advance Care Planning initiative • Gold Standards Framework (http://www.goldstandardsframework.nhs.uk)

  3. Welcome back

  4. Patient/Family/Community’s voice (10 minutes)

  5. Report back (60 minutes)

  6. PSP Storyboard template for End of Life Team Name:___________ Date:___________ 6

  7. Team members – Team picture • List team members and roles 7

  8. Our team aim An aim template for team: We aim to improve _________(name of process or topic) in _____(location) so that _______ (a numerical goal), by ________ (time period) 8

  9. Measures: Sample 9

  10. What did we do? • Summary of what you did (if you tested multiple changes in the action period pick your top 1 or 2 to share)

  11. Study • What did you learn? • Did things change from baseline in your measures?

  12. Graphs

  13. Patient story 13

  14. Provider story 14

  15. Summary of current status • Successes: • Challenges and/or barriers: • What we are planning to test next: 15

  16. All teams share!

  17. End-of-life symptom management & addressing the question of hydration • (20 minutes) • Based on materials from: • Mark Turris RN, MSN, CHPCN (C), “Symptom Management in the Last Days to Hours of Life”, Vancouver Home Hospice Consult Team • Pat Porterfield, Presentation on “Food & Fluids”, Victoria Hospice Medical Care of the Dying Course • Fraser Health Hospice Palliative Care Symptom Guidelines

  18. Physical symptoms experienced at end-of-life • Pain • Shortness of Breath • Nausea & Vomiting • Agitation

  19. Physical symptoms/changes experienced at end-of-life (continued) 5. Fatigue 6. Sleepiness 7. Inability to Swallow 8. Loss of appetite 9. Dehydration 10.Incontinence 11.Confusion

  20. Actively DyingIn the context of a progressive life-threatening illness • Low level of consciousness – sleep with occasional periods of alertness or sleeping continuously • Changes in breathing patterns – apnea, rapid shallow breathing, Cheyne-stokes, &/or moist respirations (respiratory congestion) 3. Incontinence of urine &/or feces 4. Color & temperature changes – cyanosed nail beds, pallor (face), coolness of extremities

  21. Managing pain at End of Life • Most common is use of sc meds, either continuation of previous opioid or initiation of low dose of hydromorphone or morphine • Transdermal meds can be continued, but usually available in too high a dose to initiate at this time • Sublingual & sub-buccal

  22. Normal respiratory changes • Mouth breathing, therefore dry mouth • Provide mouth care with a soft tooth brush and water, plus non-petroleum gel to lips with turns or care

  23. Respiratory congestion • Respiratory secretions – avoid unnecessary fluids or deep suctioning • Gurgly respirations – saliva over vocal chords • Glycopyrrolate 0.1-0.2 mg sc q6-8h regularly; doesn’t cross Blood Brain Barrier • Atropine eye drops s/l or 0.4-0.8 mg sc q4h regularly & prn • Scopolamine sc 0.3-0.6 mg q4-6 h reg & prn

  24. Dyspnea • “ Opioids, Opioids, Opioids “ • Likely work through opioid receptor, same as for pain • Often very low doses help, i.e. Hydromorphone 0.5mg s.c. q4h regularly and 0.1 mg q 30 min prn • Poor evidence for inhaled opioids

  25. Dyspnea (continued) • Nozinan: starting dose 2.5 to 5 mg q8h and titrate to effect. Start low to test tolerance as wide variation in patient response. Elderly patients generally respond better to nozinan than benzodiazepines. • Benzodiazepines: Lorazepam 1-2mg q4h sl/sc, midazolam intermittently or csci 1-4 mg/hr for for severe dyspnea & anxiety • Non-drug measures – fan, open window • Oxygen-if available, esp. if pt known to be hypoxic & oxygen has assisted in the past, and if does not increase restlessness; in imminently dying phase, do not monitor O2 sats & may remove O2 as death approaches & dyspnea no longer a concern

  26. Terminal restlessness • Pt. unconscious and moving about in bed • Common - usually multifactorial – system failure, infections, pain, full bladder, etc. • Rule out any physical causes such as: pain, urinary retention, or constipation. • If all physical causes ruled out – may be psychological/existential • If cannot be reversed, needs to be treated pharmacologically

  27. Terminal restlessness (continued) Neuroleptics first choice for restlessness & agitation • Nozinan (methotrimeprazine) 10-50 mg sc q4-8h and titrate, • Haloperidol 0.5- 5mg sc q4-8 h Benzodiazepines: lorazepam 1-2 mg sl/sc q4h prn on an adjunct basis – a Midazolam continuous sc infusion 1-4 mg/hr via CADD Pump for severe restlessness/agitation

  28. Food & fluids at end of life Useful questions to ask in assessing withdrawal from food & fluids during the illness: • Is the reduction in intake appropriate to the phase of the illness? Cancer treatment or palliation? Importance of performance status. Consider cachexia/anorexia syndrome • Is the patient’s mood/relationship with significant others normal? • Is the patient satisfied with their ability to eat and drink? If focus is palliation, this is most important.

  29. Fluids within the terminal phase • Preference for oral sips and good mouth care • If concern re the need for hydration in other forms such as hypodermoclysis or IV, discuss family’s understanding & expectations: • withdrawing from food and fluid is a common aspect of the dying process • parenteral therapy is not nutrition • reduced food/fluid is not uncomfortable • thirst can be addressed with good mouth care; hydration does not prevent thirst

  30. Burdens of hydration • Increased fluid can contribute to symptoms such as edema, ascites, resp. congestion, nausea & vomiting • Complexity and discomfort associated with administering fluids may increase agitation and create a need for restraint (chemical or physical) • May affect where the patient dies • Increased need to void • Dehydration may act as a natural anesthetic • May prolong suffering/dying rather than living

  31. Benefits of hydration • Reduces cognitive impairment; may improve delirium/terminal agitation at the end of life esp. if related to neurotoxicity, hypercalcemia • May prolong dying/survival (which can be seen as helpful if pt/family waiting for an event etc.) • May fulfill pt/family expectations • Can be initiated as a trial

  32. Resources for family to help with understanding the dying process • Patient education materials such as • Booklet: Preparing for the death of a loved one • Caregiver’s resources • Virtual Hospice website • “When death is near” article

  33. GPAC Palliative Care Part III: Grief and Bereavement (25 minutes)

  34. Is this a good death? Who decides? US Institute of Medicine (1997): “One that is free from avoidable suffering for patients, families, and caregivers; in general accord with patients’ and families wishes; and reasonably consistent with clinical, cultural, and ethical standards.” 34

  35. Patient perspectives: A “good death” • Pain and symptom management. • No prolongation of dying. • Sense of control: • Clear approach to decisions and roles. • Strengthening relationships: – “Doing for others”; not a burden. • Continuity of self: – Before, during, and after illness. • Meaning and completion. • Life review, purpose and meaning. 35

  36. Preparations for death • Education and support for caregivers/family. • You may need to prepare, guide, and interpret the experience. • Dialogue about dying and preparations that need to be made. • People who need to visit (and those who don’t). • Issue of “unfinished business”. • Funeral plans/wills. • ANTICIPATION is essential 36

  37. Explaining the dying phase and preparing the family.. • Patient withdrawing from world around them • Refusing tablets, food and drink or basic nursing care (need to exclude obvious clinical depression) • Decreased appetite, decreased oral intake • Decreased circulation, mottling, tachycardia • Changes in breathing patterns with respiratorycongestion (trapped secretions) or periods of apnea. • Changes in level of consciousness • Occasionally confusion, agitation, delirium • Changes in perception: Awareness of “other”. 37

  38. Can the family do this? • Practically? • Elderly couple. • Singles. • Confusion/ incontinence/costs. • Psychologically? • Mental health or addiction issues. • Out of keeping with family’s expected role or usual activity. 38

  39. End of Life care check list for likely home death • Points to consider when patients enter the dying phase: • Reconfirm a patient's goals of care, preferred place of care, what to do in an emergency. • Connect with home nursing (already in place) • Ensure that required forms are completed (No CPR and/or Notification of Expected Home Death). • Discontinue non-essential medications. 39

  40. End of Life care check list (continued) • Arrange for subcutaneous (SC) / transdermal medication administration or a drug kit to be placed in the home when a patient is no longer able to take medications by mouth. • Arrange for a hospital bed +/- pressure relief mattress. • Arrange for a Foley catheter as needed. • Leave an order for a SC anti-secretion medication (e.g., atropine, glycopyrrolate). 40

  41. Useful websites When a home death is preferred: http://www.health.gov.bc.ca/hcc/pdf/expected_home_death.pdf 41

  42. If home death not an option……… • Identify alternatives in your area. • If hospice • May differ in each Health Authority but will require involvement of palliative care team and clarification of goals of care (No CPR; No dialysis; prognosis < 3 months; no IVs; no further acute interventions). • Per diem cost (~ $30/day). • More stable re symptom management. • Private rooms and support for families. • Do you need a back-up plan? 42

  43. At the time of death • Management of terminal symptoms. • Support, with all team members, including spiritual care • Acceptance of dying as a normal process. • Acknowledge the death • Patient/family as the unit of care. • Effective communication • Check with family about all practical aspects 43

  44. What equips GPs to give quality care in the last days of life? • Strong relationships with Community Nurses and local palliative care teams. • Good access to these resources. • Shared clinical practice guidelines. • Adequate remuneration for the time intensive nature of the work. • Availability and familiarity with local “medication kits” or pharmacy arrangements. 44

  45. Supporting grief and bereavement

  46. Definitions • Bereavement: the loss of a significant person and also the period of adjustment for the bereaved after the loss. • Grief: the normal response to the loss of someone or something precious. • Mourning: the social expression of grief after a death, associated with rituals and behaviours within the appropriate religious and cultural context. 46

  47. Classes of grief • Typical (Normal) • Anticipatory • Complicated • Disenfranchised • Unresolved 47

  48. Understanding normal grief and how to support it • 85% of grief experiences follow a normal pathway - it’s not about fixing it. • In the context of a death, grief is a complex lifelong process that involves transforming a relationship rather than detaching from it. • We all grieve differently - allow for diversity. • It often gets worse before it gets better. • You can’t prevent grief, but you can try to develop elements of resilience. 48

  49. Understanding normal grief and how to support it (continued) • Lifestyle Management • What is helpful for them • “Homework” • Education • Normalize the process not “going crazy” • What to expect • What is helpful • Giving hope • Key phrases • Clichés to avoid • Resources • Pharmacology 49

  50. Communication strategies to support grieving • Use the deceased’s name. • Acknowledge the death – “I am sorry James is gone”. • Talk about the deceased and memories, ask about “What are you remembering about James today?” • Bring closure to the death “Do you have questions about James’ final illness or treatment?” • Talk about grief feelings: “How has James’ death affected you?” 50

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