1. Palliative Care 101 Gina M. Basello, D.O. Associate Program Director Jamaica Hospital Medical Center Family Medicine Residency Program

2. Overview The Aging Population The Aging Population Dying in America Dying in America What is Palliative Care? What is Palliative Care? Why Palliative Care as a Specialty Why Palliative Care as a Specialty Scope of Services/Benefits Scope of Services/Benefits Domains Domains Prognostication Prognostication

3. The Aging Population

4. By 2030, the number of people in the United States over the age of 85 is expected to double to 8.5 million By 2030, the number of people in the United States over the age of 85 is expected to double to 8.5 million As the Medicare population increases and the distribution shifts to older age groups, there will be increases to aggregate Medicare expenditures. As the Medicare population increases and the distribution shifts to older age groups, there will be increases to aggregate Medicare expenditures. Historically, approximately one-quarter of Medicare expenditures are for last-year-of-life care (Hogan et al., 2001; and Lubitz and Riley, 1993). Historically, approximately one-quarter of Medicare expenditures are for last-year-of-life care (Hogan et al., 2001; and Lubitz and Riley, 1993).

5. Where Do People Die? Hospital – 50% Hospital – 50% Nursing Home – 30% Nursing Home – 30% Home – 20% Home – 20% Where do People WANT to die? Home 1st Hospital 2nd Nursing Home Never

6. WHY? Forces exist in our health care delivery system together with the values related to health and illness, that propel the physician, patient, family towards aggressive, life prolonging care far longer than is medically appropriate; such care typically is provided in the hospital environment, up until shortly before death. Forces exist in our health care delivery system together with the values related to health and illness, that propel the physician, patient, family towards aggressive, life prolonging care far longer than is medically appropriate; such care typically is provided in the hospital environment, up until shortly before death.

7. How do Patients View What is a “Good Death” Dying not be prolonged Dying not be prolonged Pain and symptoms controlled Pain and symptoms controlled Not being a burden to others Not being a burden to others Control over decision-making Control over decision-making Strengthening relationships Strengthening relationships

8. Major Causes of Death in America Chronic Diseases Heart disease Heart disease Cancer Cancer Respiratory Disease Respiratory Disease Stroke Stroke Acute Conditions Infections Trauma Homicide/suicide

9. Status of Palliative Care in the US: SUPPORT Study SUPPORT Study : Study to Understand Prognosis and Preferences for Outcomes and Risks of Treatments SUPPORT Study : Study to Understand Prognosis and Preferences for Outcomes and Risks of Treatments Approx. 10,000 patients, 5,000 deaths related to 9 serious illnesses during admission to 5 US teaching hospitals Approx. 10,000 patients, 5,000 deaths related to 9 serious illnesses during admission to 5 US teaching hospitals

10. SUPPORT: Phase I Findings 46% of DNR orders were written within 2 days of death 46% of DNR orders were written within 2 days of death 47% of physicians knew when their patients wanted to avoid CPR 47% of physicians knew when their patients wanted to avoid CPR 38% of patients spent 10+ days in ICU 38% of patients spent 10+ days in ICU 50% of dying patients suffered severe pain 50% of dying patients suffered severe pain High hospital resource use High hospital resource use

11. Status of Palliative Care in the US: SUPPORT Study SUPPORT Study : Study to Understand Prognosis and Preferences for Outcomes and Risks of Treatments SUPPORT Study : Study to Understand Prognosis and Preferences for Outcomes and Risks of Treatments Approx. 10,000 patients, 5,000 deaths related to 9 serious illnesses during admission to 5 US teaching hospitals Approx. 10,000 patients, 5,000 deaths related to 9 serious illnesses during admission to 5 US teaching hospitals

12. Palliative Care: Definition “The active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social and spiritual problems, is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with anti-cancer treatment.” World Health Organization, 1990 World Health Organization, 1990

13. Medical Terms Comfort Care Comfort Care End of Life Care End of Life Care DNR DNR Terminal Terminal Palliative Care Palliative Care Hospice Care Hospice Care

14. The Palliative Care Team PATIENT family Nurses Social Worker Chaplain Dietician Other health care professionals Administration Volunteers Occupational Therapist Other therapies Physiotherapist Pharmacist Physician Community resources Ajemian, Oxford Textbook of Palliative Medicine, 1993

15. Benefits of Palliative Care Patients Patients Families/Caregivers Families/Caregivers Providers Providers Hospitals Hospitals Communities Communities

16. Improved Clinical Outcomes Palliative care relieves pain and distressing symptoms. Palliative care relieves pain and distressing symptoms. Palliative care helps with difficult decision- making. Palliative care helps with difficult decision- making. Palliative care helps patients complete life- prolonging or curative treatments. Palliative care helps patients complete life- prolonging or curative treatments. Palliative care boosts patient and family satisfaction. Palliative care boosts patient and family satisfaction.

17. Comparing Hospice vs. Palliative Care Hospice Prognosis of 6 months or less Prognosis of 6 months or less Focus on comfort care Focus on comfort care Medicare hospice benefit Medicare hospice benefit Volunteers integral and required aspect of the program Volunteers integral and required aspect of the program Palliative Care Any time during illness May be combined with curative care Independent of payer Health care professionals

18. What is End of Life and Palliative Care? Dying as a normal life cycle event Dying as a normal life cycle event Personal Awareness Personal Awareness Making the transition from living to dying Attitude issues Knowledge/Training Issues Necessary Skills Making the transition from living to dying Attitude issues Knowledge/Training Issues Necessary Skills How to move forward How to move forward Understanding Terms Understanding Terms

19. Why Teach? Why Learn? Why Practice? Palliative Care fast becoming industry standard Palliative Care fast becoming industry standard Subspecialty Board on the horizon Subspecialty Board on the horizon OUR patients life cycle OUR patients life cycle Family Medicine model and philosophy of care Family Medicine model and philosophy of care Compassionate complete care for advanced chronic illness AND end of life Compassionate complete care for advanced chronic illness AND end of life

20. Family Medicine and Palliative Care Family Physicians must collaborate to ensure that Palliative Care remains within our scope Family Physicians must collaborate to ensure that Palliative Care remains within our scope We need to come together for the purposes of: Education We need to come together for the purposes of: EducationTrainingResearch Scholarly Activity Establishing Clinical Standards

21. LCME Standards Clinical instruction should cover all organ systems, and must include the important aspects of preventive, acute, chronic, continuing, rehabilitative, and end-of-life care. Clinical instruction should cover all organ systems, and must include the important aspects of preventive, acute, chronic, continuing, rehabilitative, and end-of-life care.

22. ACGME Residents should understand basic legal terms and concepts related to the practice of medicine, especially their legal obligations regarding patient information and the provision of end-of- life care. Residents should understand basic legal terms and concepts related to the practice of medicine, especially their legal obligations regarding patient information and the provision of end-of- life care.

23. JCAHO Ethics, Rights and Responsibilities Ethics, Rights and Responsibilities Patient/Family involvement in decision making Address wishes of patient relating to end of life care Provision of Care Provision of Care Interdisciplinary, collaborative manner Pain Assessment and Management!!! Pain Assessment and Management!!!

25. Providers’ Need Assessment PGY1s: Know that they don’t know PGY1s: Know that they don’t know PGY2s: Know more than they think PGY2s: Know more than they think PGY3s and Attendings: Don’t know as much as they think they do PGY3s and Attendings: Don’t know as much as they think they do

26. Essential Components of Palliative Care Communication Communication Decision Making Decision Making Management of Complications Management of Complications Symptom Control Symptom Control Psychosocial Care Psychosocial Care Care of the Dying Care of the Dying From Institute of Medicine 2001

27. Domains of End-of-Life Care Pain Non-Pain Symptoms/Syndromes Communication/Ethics Terminal Care/Dying/ Patient- Family Experiences Special Interventions Disease Categories

28. PAIN Pain Assessment Pain Assessment Pain Treatment Pain Treatment Addiction/Tolerance/Physical Dependence Addiction/Tolerance/Physical Dependence Chronic Non-Malignant Pain Chronic Non-Malignant Pain Controlled Substance regulations Controlled Substance regulations

29. Non-Pain Symptoms/Syndrome Nausea/Vomiting Nausea/Vomiting Dyspnea Dyspnea Constipation/Diarrhea Constipation/Diarrhea Delirium Delirium Depression/Suicide Depression/Suicide Sleep Disturbances Sleep Disturbances Anorexia/Cachexia Anorexia/Cachexia

30. Communications/Ethics Giving Bad News Giving Bad News Running A Family Conference Running A Family Conference DNR/Advanced Directives DNR/Advanced Directives Decision Making Capacity Decision Making Capacity Personal Awareness Personal Awareness Treatment “Withdrawal” Treatment “Withdrawal” Cross-Cultural Issues Cross-Cultural Issues Assisted Suicide/Euthanasia Assisted Suicide/Euthanasia

31. Terminal Care/Dying Grief/Bereavement Grief/Bereavement Quality of Life Quality of Life Suffering Suffering Hope/Spirituality Hope/Spirituality Medicare/Hospice Benefits Medicare/Hospice Benefits Home Care Home Care Caring for Families Caring for Families

32. Special Interventions Hydration/Nutrition Hydration/Nutrition Blood Products Blood Products Antibiotics Antibiotics Rehabilitation Rehabilitation Radiation/Chemotherapy/Surgery Radiation/Chemotherapy/Surgery Interventional Procedures Interventional Procedures Dialysis Dialysis

33. Disease Categories Neoplastic Diseases Neoplastic Diseases Cardiopulmonary Diseases Cardiopulmonary Diseases Endocrine Diseases Endocrine Diseases Hepato-Renal Diseases Hepato-Renal Diseases Infectious Disease/HIV/AIDS Infectious Disease/HIV/AIDS Neurological Neurological

34. Living with Life-Limiting Disease Medical Information Social Issues Emotional Issues Physical Symptoms Psychological Issues Spiritual Issues Practical Issues

35. Curative vs. Palliative Model of Care

36. Restoring the Balance Life Prolonging Care Palliative Care

37. Continuum of Care Model Disease Progression D E A T H B E R E A V E M E N T Curative Intent Palliative Care Curative Care

38. Prognostication How do you know when your patient is dying? How do you know when your patient is dying? What do you say to your patient and/or their families about prognosis? What do you say to your patient and/or their families about prognosis? Where did you learn how to prognosticate? Where did you learn how to prognosticate? Are you comfortable with prognosticating? Are you comfortable with prognosticating?

39. Traditional Domains of Medicine Diagnosis Diagnosis Treatment Treatment Prognosis – This important area receives relatively little attention in modern medical training and research Prognosis – This important area receives relatively little attention in modern medical training and research

40. Prognosis Important because enables better decision making about care options Important because enables better decision making about care options General physician bias – overly optimistic by 2 to 5 fold General physician bias – overly optimistic by 2 to 5 fold Easier for some illnesses Easier for some illnesses Poor prediction skills may reflect educational deficiencies for clinicians Poor prediction skills may reflect educational deficiencies for clinicians We MUST accept certain degree of prognostic uncertainty We MUST accept certain degree of prognostic uncertainty

41. Prognostication Doctors are poor Prognosticators Doctors are poor Prognosticators Overly Optimistic Overly Optimistic More experienced Physicians make the least Errors More experienced Physicians make the least Errors Decreased Prognostic Accuracy with Longer Physician-Patient Relationship Decreased Prognostic Accuracy with Longer Physician-Patient Relationship Most DNR’s are in Last 2 days of Life Most DNR’s are in Last 2 days of Life

42. The Dying Trajectory Concept first introduced by Glaser and Strauss in 1965 Concept first introduced by Glaser and Strauss in 1965 Refers to change in health status over time as a patient approaches death Refers to change in health status over time as a patient approaches death Implications for prognosis, care needs and decision making Implications for prognosis, care needs and decision making Varies by individual patient and disease Varies by individual patient and disease

43. Determining Prognosis Functional Status Functional Status Measurement Scales Measurement Scales ADL’s ADL’s Nutritional Status/Weight Loss Nutritional Status/Weight Loss

44. Prognostic Tools Most valuable is to note magnitude of change observed since last prediction and incorporate into new prediction Most valuable is to note magnitude of change observed since last prediction and incorporate into new prediction Rule of thumb = A patient with advanced cancer who has “taken to bed” without a correctable cause will usually die in a matter of weeks to a few months Rule of thumb = A patient with advanced cancer who has “taken to bed” without a correctable cause will usually die in a matter of weeks to a few months

45. Determining Prognosis Functional Ability Single most important Predictive Factor Functional Ability Single most important Predictive Factor How much the patient can do Activity/Energy Level Measurement Scales Karnofsky Index- 100= Normal 0=Dead Less than 50 = less than 6 month prognosis Measurement Scales Karnofsky Index- 100= Normal 0=Dead Less than 50 = less than 6 month prognosis

46. Activities of Daily Living (ADL’s) Bathing Bathing Dressing Dressing Ambulating Ambulating Feeding Feeding Toileting Toileting Transfer Transfer

47. Nutritional Status Weight Loss Greater Than 10% Weight Loss Greater Than 10% Albumin less than 2.5 Albumin less than 2.5 Decrease Appetite/Ability to eat Decrease Appetite/Ability to eat Three to Six Month Prognosis

48. Cancer Most predictable Most predictable Different types and locations often follow similar trajectories Different types and locations often follow similar trajectories Most remain well until 5 to 6 months prior to death Most remain well until 5 to 6 months prior to death Decline slow until 2 – 3 months before and then rapid decline ensues Decline slow until 2 – 3 months before and then rapid decline ensues Hospice care initially developed with this trajectory in mind Hospice care initially developed with this trajectory in mind

49. CHF/COPD/CVA, etc More difficult to predict time of death More difficult to predict time of death Overall health status low 6 to 24 months prior to death Overall health status low 6 to 24 months prior to death Intermittent acute exacerbations Intermittent acute exacerbations Oscillating from chronic ill health to acute crisis Oscillating from chronic ill health to acute crisis

50. CHF/COPD/CVA, etc…. No guarantee that current dip will be the last one No guarantee that current dip will be the last one Patients, families AND physicians have trouble breaking the cycle they despise Patients, families AND physicians have trouble breaking the cycle they despise May not be able to definitively say when but should focus on how and where May not be able to definitively say when but should focus on how and where

51. 51 Palliative Care Patients CHF, COPD, Cancer, etc CHF, COPD, Cancer, etc Expected prognosis <12 months Expected prognosis <12 months Homebound Homebound Deteriorating medical condition at risk for needing symptom management Deteriorating medical condition at risk for needing symptom management Family conflicts Family conflicts Emphasis of care in the home setting Emphasis of care in the home setting 2 or more ED or Inpatient admissions in the last year 2 or more ED or Inpatient admissions in the last year Functional or Performance Scale Score Low Functional or Performance Scale Score Low

52. Patterns of Death The Cancer Pattern; * Rapid Decline * 70-80% Loss of Function in Last Three Months The Cancer Pattern; * Rapid Decline * 70-80% Loss of Function in Last Three Months The Chronic Disease Pattern; * Slow Decline over Years The Chronic Disease Pattern; * Slow Decline over Years * Harder to Prognosticate * Death often Sudden and Unpredictable

54. Prognosis Perspectives Clinicians often will not identify patients with serious life threatening illnesses as terminal Clinicians often will not identify patients with serious life threatening illnesses as terminal When asked, “Is this patient dying?” When asked, “Is this patient dying?” Most say, “No” YET… When asked, “Would you be surprised if this patient died within the next year?” When asked, “Would you be surprised if this patient died within the next year?” Most say, “No” Most say, “No”

55. How Do You Know Someone is Dying? “that look” “that look” not eating not eating poor function poor function skin changes skin changes

56. Communicating prognosis… Some patients want to plan Some patients want to plan Others are seeking reassurance Others are seeking reassurance Tough questions: Tough questions: “Am I dying?” “Am I dying?” “How long do I have to live?” “How long do I have to live?”

57. …Communicating prognosis Inquire about reasons for asking Inquire about reasons for asking “Yes… but I don’t know when it will be” “Yes… but I don’t know when it will be” “What are you expecting to happen?” “What are you expecting to happen?” “What are your fears?” “What are your fears?” “Are there things you need to finish before you die?” “Are there things you need to finish before you die?” “What experiences have you had with: “What experiences have you had with: others with same illness? others with same illness? others who have died?” others who have died?”

58. …Communicating prognosis Patients vary Patients vary “planners” want more details “planners” want more details those seeking reassurance want less those seeking reassurance want less Avoid precise answers Avoid precise answers hours to days … months to years hours to days … months to years Remember, we are not good at this Remember, we are not good at this

59. Case Example Mr. Sullivan is 72 years old. He has had lung cancer for 9 months and is now at the end stage. He is admitted to the hospital for worsening shortness of breath and you think this will be his final admission. He is very likely to suffer pulmonary or cardiac arrest. Mr. Sullivan is 72 years old. He has had lung cancer for 9 months and is now at the end stage. He is admitted to the hospital for worsening shortness of breath and you think this will be his final admission. He is very likely to suffer pulmonary or cardiac arrest. His chances of surviving resuscitation is about 10%. There is a 90% chance he will die anyway. His chances of surviving resuscitation is about 10%. There is a 90% chance he will die anyway. His chances of leaving the hospital alive is <2%. His chances of leaving the hospital alive is <2%.

60. Discussion What are the Palliative Care issues that need to be addressed? What are the Palliative Care issues that need to be addressed? Your senior resident, on rounds, is upset about the discussion and asks, “If aggressive treatment will give him a few more months alive with his family, shouldn’t we do that????” Your senior resident, on rounds, is upset about the discussion and asks, “If aggressive treatment will give him a few more months alive with his family, shouldn’t we do that????” What do you say? What do you say?

61. Where Do We Go From Here? Education/Training Education/Training Clinical Care across Continuum Clinical Care across Continuum Performance Improvement Performance Improvement Patient Education/Community Outreach Patient Education/Community Outreach Research Research

62. Questions???