Module #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 Introductions

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

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

Module #1 Self-Rating Exercise I (Self-Rating Scale: 1 = Low to 5 = High) Knowledge, Skills, Attitudes Confidence to Teach 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 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 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 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 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 Top Five Causes of Death 1900 Influenza, pneumonia11.8% Tuberculosis11.3% Gastritis, enteritis 8.3% Heart Disease 8.0% Stroke 6.2% Brim et al., Heart Disease 25.7% Cancer 20.0% Stroke 6.0% COPD 4.5% Accidents 3.4% Minino & Smith, 2001

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

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

Module #1 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 The Facts of Life About Dying

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

Module #1 Other Dying Trajectories

Module #1 Implications of different trajectories of dying Brainstorm

Module #1 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 Different Dying Trajectories Affect…

Module #1 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 Discussion Themes for a ‘good’ death

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

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

Module #1 Dying Involves a Lot of People

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

Module #1 Attributes of dying well and problematic dying Positive ThemesNegative Themes Discussion of Cases

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

Module #1 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 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 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 Most Hospice Deaths Judged Peaceful

Module #1 Symptom Percent Noisy, moist breathing56 Urinary incontinence32 Urinary retention21 Pain42 Restlessness, agitation42 Dyspnea22 Nausea, vomiting14 Sweating14 Jerking, twitching12 Confusion08 Lichter and Hunt, 1990 Symptoms & Signs in the Last 48 Hours

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

Module #1 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 Loss of Speech

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

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

Module #1 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 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 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 Learning Objectives