1. Osteopathic EPEC Osteopathic EPEC Education for Osteopathic Physicians on End-of-Life Care Based on The EPEC Project, created by the American Medical Association and supported by the Robert Wood Johnson Foundation. Adapted by the American Osteopathic Association for educational use. American Osteopathic Association AOA: Treating our Family and Yours

2. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours Module 12 Last Hours of Living

3. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours Last hours of living Everyone will die < 10% suddenly > 90% prolonged illness Last opportunity for life closure Little experience with death Exaggerated sense of dying process

4. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours Prognostication Skill of prediction and art of communication When? Advise in terms of ranges: ­hours to days ­days to weeks ­weeks to months

5. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours Preparing for the last hours of life... Time course unpredictable Any setting that permits privacy, intimacy Anticipate need for medications, equipment, supplies Regularly review the plan of care

6. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours... Preparing for the last hours of life Caregivers Awareness of patient choices Knowledgeable, skilled, confident Rapid response Likely events, signs, symptoms of the dying process

7. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours Module 12, Part 1 Physiological Changes, Symptom Management

8. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours Objectives Assess and manage the pathophysiologic changes of dying Care for the whole person, not just the symptoms

9. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours Physiologic changes during the dying process Increasing weakness, fatigue Decreasing appetite / fluid intake Decreasing blood perfusion Neurologic dysfunction Loss of ability to close eyes Pain

10. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours Weakness / fatigue Decreased ability to move Joint position fatigue Increased risk of pressure ulcers Increased need for care Activities of daily living Turning, movement, massage, OMT

11. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours Decreasing appetite / food intake Fears: “giving in,” starvation Reminders food may be nauseating anorexia may be protective risk of aspiration clenched teeth express desires, control Help family find alternative ways to care

12. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours Decreasing fluid intake... Oral rehydrating fluids Fears: dehydration, thirst Remind families, caregivers Dehydration does not cause distress Dehydration may be protective

13. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours... Decreasing fluid intake Parenteral fluids may be harmful Fluid overload, breathlessness, cough, secretions Mucosa / conjunctiva care

14. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours Decreasing blood perfusion Tachycardia, hypotension Peripheral cooling, cyanosis Mottling of skin Diminished urine output Parenteral fluids will not reverse

15. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours Neurologic dysfunction Decreasing level of consciousness Communication with the unconscious patient Terminal delirium Changes in respiration Loss of ability to swallow, sphincter control

16. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours Frequency of symptoms… last two weeks of life Pain (51-100%) Dyspnea (22-46%) Asthenia (80%) Anorexia (80%) Dry mouth (70%) Mental confusion (68%)

17. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours Signs of active dying Retained audible respiratory secretions - death rattle (24-60 hours) Respirations with mandibular movement (jaw movement increases with breathing) (2-5.8 hours) Cyanosis of extremities (1-5 hours) No radial pulse (1-3 hours)

18. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours 2 roads to death Restless Confused Tremulous Hallucinations Mumbling Delirium Myoclonic Jerks Sleepy Lethargic Obtunded Semi-comatose Comatose Seizures THE USUAL ROAD THE DIFFICULT ROAD Normal Dead

19. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours Decreasing level of consciousness “The usual road to death” Progression Eyelash reflex

20. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours Communication with the unconscious patient... Distressing to family Awareness > ability to respond Assume patient hears everything

21. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours... Communication with the unconscious patient Create familiar environment Include in conversations assure of presence, safety Give permission to die Touch – the power of touch can provide comfort, caring

22. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours Terminal delirium “The difficult road to death” Medical management Benzodiazepines ­ lorazepam, midazolam Neuroleptics ­ haloperidol, chlorpromazine Seizures Family needs support, education

23. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours Changes in respiration... Altered breathing patterns diminishing tidal volume apnea Cheyne-Stokes respirations accessory muscle use last reflex breaths

24. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours... Changes in respiration Fears Suffocation Management Family support Oxygen may prolong dying process Breathlessness

25. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours Loss of ability to swallow Loss of gag reflex Buildup of saliva, secretions Scopolamine to dry secretions Postural drainage Positioning Suctioning

26. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours Loss of sphincter control Incontinence of urine, stool Family needs knowledge, support Cleaning, skin care Urinary catheters Absorbent pads, surfaces

27. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours Pain... Fear of increased pain Assessment of the unconscious patient Persistent vs fleeting expression Grimace or physiologic signs Incident vs rest pain Distinction from terminal delirium

28. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours... Pain Management when no urine output Stop routine dosing, infusions of morphine Breakthrough dosing as needed (prn) Least invasive route of administration

29. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours Loss of ability to close eyes Loss of retro-orbital fat pad Insufficient eyelid length Conjunctival exposure Increased risk of dryness, pain Maintain moisture

30. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours Medications Limit to essential medications Choose less invasive route of administration Buccal mucosal or oral first, then consider rectal Subcutaneous occasionally Intravenous rarely Intramuscular almost never Add intravenously, rarely

31. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours Medical futility Won’t achieve the patient’s goal Serves no legitimate goal of medical practice Ineffective more than 99% of the time Does not conform to accepted community standards

32. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours Physiologic Changes and Symptom Management Summary

33. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours Module 12, Part 2 Expected Death

34. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours Objectives Prepare, support the patient, family, caregivers

35. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours As expected death approaches... Discuss Patient / family wishes Status of patient Realistic care goals Role of physician / interdisciplinary team What patient experiences  what onlookers see

36. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours... As expected death approaches Reinforce signs, events of dying process Personal, cultural, religious, rituals, funeral planning Family support throughout the process

37. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours Counsel about palliative care interventions Be clear about intent of intervention “We would like to increase his morphine dose because we are concerned that he might be experiencing some pain (or shortness of breath).” Inquire as to understanding of action and concerns “What is your understanding of the proposed actions. Do you have any concerns?”

38. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours … Counsel about palliative care interventions Address spoken (and unspoken) concerns “We do not believe this action will hasten death, nor is this the intent.” “Our goal is to enable him to die a natural and peaceful death, letting it unfold at its own pace.”

39. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours Signs that death has occurred... Absence of heartbeat, respirations Pupils fixed Color turns to a waxen pallor as blood settles Body temperature drops

40. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours... Signs that death has occurred Muscles, sphincters relax Release of stool, urine Eyes can remain open Jaw falls open Body fluids may trickle internally

41. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours Telephone notification of death Inquire as to where the person is and whether alone (if driving while on a cell phone, advise the person to pull over and park) Identify self, relationship to the deceased (physician/nurse on-call), give brief advanced alert (I’m sorry I have some bad news.”) and give the news Listen more than you speak. If questions arise, answer them briefly. For more detailed inquiries, reassure the caller that these can be answered later.

42. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours …Telephone notification of death Do NOT say that the person must come in right away – give permission to let feelings settle; suggest coming in with a family member or friend Give clear instructions as to where to go and whom to contact when arriving at the hospital, home or facility Finish with an empathic statement, such as “This must be very hard for you…Please let me know if there is anything else I can do to help.”

43. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours After expected death occurs... Care shifts from patient to family / caregivers Different loss for everyone Invite those not present to bedside

44. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours... After expected death occurs Take time to witness what has happened Create a peaceful, accessible environment When rigor mortis sets in Assess acute grief reactions

45. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours Moving the body Prepare the body Choice of funeral service providers Wrapping, moving the body Family presence Intolerance of closed body bags

46. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours Other tasks Notify other physicians, caregivers of the death Stop services Arrange to remove equipment / supplies Secure valuables with executor Dispose of medications, biologic wastes

47. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours Bereavement care Attendance at funeral Follow up to assess grief reactions, provide support Assistance with practical matters Redeem insurance Will, financial obligations, estate closure

48. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours Dying in institutions Home-like environment Permit privacy, intimacy Personal things, photos Continuity of care plans Avoid abrupt changes of settings Consider a specialized unit

49. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours Expected Death Summary

50. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours Module 12, Part 3 Loss, Grief, Bereavement

51. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours Objectives Identify, manage initial grief reactions

52. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours Loss, grief with life- threatening illness... Highly vulnerable Frequent losses Function / control / independence Image of self / sense of dignity Relationships Sense of future

53. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours... Loss, grief with life- threatening illness Confront end of life High emotions Multiple coping responses

54. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours Loss, grief, coping Grief = emotional response to loss Coping strategies Conscious, unconscious Avoidance Destructive Suicidal ideation

55. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours Normal grief Physical Hollowness in stomach, tightness in chest, heart palpitations Emotional Numbness, relief, sadness, fear, anger, guilt Cognitive Disbelief, confusion, inability to concentrate

56. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours Complicated grief... Chronic grief Normal grief reactions over very long periods of time Delayed grief Normal grief reactions are suppressed or postponed

57. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours... Complicated grief Exaggerated grief Self-destructive behaviors eg, suicide Masked grief Unaware that behaviors are a result of the loss

58. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours Tasks of the grieving Accept the reality of the loss Experience the pain caused by the loss Adjust to the new environment after the loss Rebuild a new life

59. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours Assessment of grief Repeated assessments Anticipated, actual losses Emotional responses Coping strategies ­ role of religion Interdisciplinary team assessment, monitoring

60. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours Grief management If reactions, coping strategies appropriate Monitor Support ­ counseling ­ rituals If inappropriate, potentially harmful rapid, skilled assessment, intervention

61. EPECEPECEPECEPEC American Osteopathic Association AOA: Treating our Family and Yours Loss, Grief, Bereavement Summary