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ELC Curriculum for Medical Teachers. Death and Dying in the U.S.A. Pain Management Communicating with Patients and Families Making Difficult Decisions Non-Pain Symptom Management Venues and Systems of Care Psychiatric Issues and Spirituality Instituting Change. Introductions.

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ELC Curriculum for Medical Teachers


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    1. ELC Curriculum for Medical Teachers • Death and Dying in the U.S.A. • Pain Management • Communicating with Patients and Families • Making Difficult Decisions • Non-Pain Symptom Management • Venues and Systems of Care • Psychiatric Issues and Spirituality • Instituting Change Module #1

    2. Introductions Module #1

    3. Brief Overview of End-of-Life Care • How are we doing in end-of-life care (ELC) in this country? Module #1

    4. Why a Course in ELC is Needed • End-of-life care is neglected in physician training • Studies show significant deficiencies in care Module #1

    5. Self-Rating Exercise I • (Self-Rating Scale: 1 = Low to 5 = High) • Knowledge, Skills, Attitudes Confidence to Teach • 1 2 3 4 5 1 2 3 4 5 • Module Titles • Overview: Death and Dying • in the U.S.A. • Pain Management • Communicating with Patients • and Families • Making Difficult Decisions • Non-Pain Symptom • Management • Venues and Systems of Care • Psychiatric Issues and • Spirituality Module #1

    6. Self-Assessed Knowledge Rating Study • Most physicians lack knowledge about the physical changes of dying • On a scale of 1 - 5, the mean self-assessed knowledge rating of interns on physical changes of dying was 1.70 • The lowest score of 6 items rating clinical expertise • Hallenbeck and Bergen, 1999 Module #1

    7. Overall Goals of the Course • To enhance physician skills in ELC • To foster a commitment to improving care for the dying • To improve the dying experience for patients, families, and health care providers • To improve teaching related to ELC Module #1

    8. END-OF-LIFE CARE:Module 1 • Death and Dying in the U.S.A. • Who dies where, and when • Patterns of death and prognostication • The ‘good death’ • Experiences with the dying • The last 48 hours Module #1

    9. Learning Objectives • Module 1: Death and Dying in the U.S.A. • Describe how and where people die in the U.S.A. • Identify patterns of dying and related issues of prognosis • Identify the characteristics of what a ‘good’ death might be for different populations and for yourself • Increase your understanding of events in the last 48 hours of life • Incorporate this content into your clinical teaching Module #1

    10. 1900 Influenza, pneumonia 11.8% Tuberculosis 11.3% Gastritis, enteritis 8.3% Heart Disease 8.0% Stroke 6.2% Brim et al., 1970 2000 Heart Disease 25.7% Cancer 20.0% Stroke 6.0% COPD 4.5% Accidents 3.4% Minino & Smith, 2001 Top Five Causes of Death Module #1

    11. 6% 20% 17% Residence 57% Nursing Home Hospital Other 1992 Data, IOM 1997 Where We Die Module #1

    12. Dying in the U.S.A.: Epidemiology & Economics • Annual deaths (2000): 2.40 million • Percentage in Hospice: 17% • Up from 11% in 1993 • Expense of dying (1987): • 0.9% of population • Last six months cost: $44.9 billion (in 1992 dollars) • This is 7.5% of total personal health care expenditures Cohen et al., 1995 Module #1

    13. Dying is Largely Publicly Funded in U.S.A. • 70% of people dying are covered by Medicare • 13% of Medicare recipients also receive Medicaid • Gornick et al., 1996 Module #1

    14. Economic Impact on Families by a Death in the Family • 30% of families are impoverished by the process of dying • Covinsky, 1994 Module #1

    15. The Facts of Life About Dying • 2.4 million people die annually in U.S. • 70% of these covered by Medicare • $44.9 billion annual cost • Only 48% of that comes out of Medicare • 30% of families are impoverished by a death Module #1

    16. 100% Functional Status 6 months 0 Time Trajectory of Steady Decline Module #1

    17. Other Dying Trajectories Module #1

    18. Brainstorm • Implications of different trajectories of dying Module #1

    19. Different Dying Trajectories Affect… • Our ability to predict who is dying • Reimbursement systems • Where people die • Medical needs of dying patients • The impact of the dying process on patient and family Module #1

    20. Fantasy Death Exercise What are your criteria for a ‘good’ death? The only hitch, as in life, is that you have to die. Imagine you are there right now. Notice where you are, what your are doing, who is with you, what it is like, perhaps sounds, smells, other sensory specifics… Module #1

    21. Discussion • Themes for a ‘good’ death Module #1

    22. Themes for a ‘Good’ Death • Home • Comfort • Sense of completion (tasks accomplished) • Saying goodbye • Life-review • Love Module #1

    23. Common Ideal Death Scenarios • Sudden death in sleep • Dying at home • Dying engaged in meaningful activity Module #1

    24. Health care system Family Patient Physician Society Dying Involves a Lot of People Module #1

    25. Discussion • What do these themes and scenarios imply for our work as physicians? • Few ‘ideal’ deaths contain medical settings or staff • What does this mean to us, and how do we deal with it? Module #1

    26. Experiences with Dying • How many dying patients have you cared for? • Think of a particularly memorable case • What made it memorable to you? Module #1

    27. Discussion of Cases • Attributes of dying well and problematic dying • Positive Themes Negative Themes Module #1

    28. The Last 48 Hours • How do you know a person is dying? • What are some of the signs of imminent death? Module #1

    29. Signs that Suggest Active Dying • No intake of water or food • Dramatic skin color changes • Respiratory mandibular movement (RMM) • Sunken cheeks, relaxation of facial muscles • Rattles in chest • Cheyne-Stokes respirations • Lack of pulse Module #1

    30. SUPPORT Study N=9105 • < 40% had discussed CPR preferences • 49% wanting CPR withheld did not have DNR orders • 50% of all DNR orders written within last 48 hours of life • 50% were assessed with moderate to severe pain half of the time during last 3-days of life • Lichter and Hunt, 1990 Module #1

    31. Most Hospice Deaths Judged Peaceful • 91.5% of deaths peaceful • New pain in 29.5% of cases • Pain exacerbated in 21.5% of cases • No patient experienced persistent, severe pain • 91% of patients were on opioids • Lichter and Hunt, 1990 Module #1

    32. Symptoms & Signs in the Last 48 Hours • Symptom Percent • Noisy, moist breathing 56 • Urinary incontinence 32 • Urinary retention 21 • Pain 42 • Restlessness, agitation 42 • Dyspnea 22 • Nausea, vomiting 14 • Sweating 14 • Jerking, twitching 12 • Confusion 08 • Lichter and Hunt, 1990 Module #1

    33. Events of the Last 48 Hours • Orderly loss of the senses and desires • Hunger • Thirst (but persistent dry mouth) • Speech • Vision • Hearing and touch Module #1

    34. Loss of Hunger • Families tend to want to nurture • A basic way to nurture is to feed • Families may be distressed if patient doesn’t eat • - Distress arises from: • Inability to nurture loved one who is dying • Fear that patient is ‘starving’ (suffering) Module #1

    35. Loss of Thirst • Dry mouth is misinterpreted as thirst Module #1

    36. Loss of Speech • Loss of two-way verbal exchange is a challenge • At this point the family may realize that the patient is really dying • Difficulty with communication brings up many questions Module #1

    37. Loss of Vision • Patient may appear to stare off in space, as if looking through people Module #1

    38. Loss of Hearing & Touch • These senses appear to be the last to go • Knowing this allows families to be involved far into the dying process Module #1

    39. Terminal Syndrome Characterized by Retained Secretions • Lack of cough • Multi-system shut-down • Not always associated with dyspnea • Vigorous hydration may flood lungs • Deep suctioning is generally ineffective • Role of IV and antibiotics is controversial Module #1

    40. Physician Checklist • Treatment • Switch essential medications to non-oral route • Stop unnecessary medications, procedures, monitoring • Evaluate for new symptoms • Pain, dyspnea, urinary retention, agitation, respiratory secretions • Family • Contact, engage, educate, facilitate relationship with dying patient, console • Yourself • Bear witness Module #1

    41. Learning Objectives • Describe how and where people die in the U.S.A. • Identify patterns of dying and related issues of prognosis • Identify the characteristics of what a ‘good death’ might be for different populations and for yourself • Increase your understanding of events in the last 48 hours of life • Incorporate this content into your clinical teaching Module #1