1. Introduction to Palliative Care and Hospice VA Palo Alto Inpatient Hospice

2. Palliative Care Interdisciplinary care that aims to relieve suffering and improve quality of life for patients with advanced illness and their families. It is offered simultaneously with all other appropriate medical treatment.

3. Hospice Hospice is a concept of care designed to provide comfort and support to patients and families when cure-oriented treatments are no longer desirable. Hospice is a concept of care designed to provide comfort and support to patients and families when cure-oriented treatments are no longer desirable. Hospice offers bereavement and counseling services to families before and after a patient's death. Hospice offers bereavement and counseling services to families before and after a patient's death. Hospice care neither prolongs life nor hastens death. Hospice care neither prolongs life nor hastens death. Hospice care is provided by an interdisciplinary team. Hospice care is provided by an interdisciplinary team.

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

5. Self-Assessed Knowledge Rating Study Most physicians lack knowledge about the physical changes of dying 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 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 Hallenbeck and Bergen, 1999

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

7. Top Five Causes of Death 1900 1900 Influenza, pneumonia11.8% Influenza, pneumonia11.8% Tuberculosis11.3% Tuberculosis11.3% Gastritis, enteritis8.3% Gastritis, enteritis8.3% Heart Disease 8.0% Heart Disease 8.0% Stroke 6.2% Stroke 6.2% Brim et al., 1970 Brim et al., 1970 2000 2000 Heart Disease 25.7% Heart Disease 25.7% Cancer 20.0% Cancer 20.0% Stroke 6.0% Stroke 6.0% COPD 4.5% COPD 4.5% Accidents 3.4% Accidents 3.4% Minino & Smith, 2001 Minino & Smith, 2001

8. Where We Die 6% 57% 17% 20% Residence Nursing Home Hospital Other 1992 Data, IOM 1997

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

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

11. Trajectory of Steady Decline Functional Status 100% Time 0 6 months

12. Other Dying Trajectories

13. Implications of different trajectories of dying Implications of different trajectories of dying Brainstorm

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

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

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

17. Sudden death in sleep Sudden death in sleep Dying at home Dying at home Dying engaged in meaningful activity Dying engaged in meaningful activity Common Ideal Death Scenarios

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

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

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

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

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

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

24. Dry mouth is misinterpreted as thirst Dry mouth is misinterpreted as thirst Loss of Thirst

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

26. Patient may appear to stare off in space, as if looking through people Patient may appear to stare off in space, as if looking through people Loss of Vision

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

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

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

30. Describe how and where people die 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 patterns of dying and related issues of prognosis Identify the characteristics of what a ‘good death’ might be for different populations and for yourself 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 Increase your understanding of events in the last 48 hours of life Learning Objectives