Introduction to End of Life Care

1. Introduction to End of Life Care Joel S. Policzer, MD Barry M. Kinzbrunner, MD

2. Kubla-Ross Stages of Dying • Denial • Anger • Bargaining • Despair • Acceptance

3. Defining “Good Death” Deuteronomy 30:15 רְאֵה נָתַתִּי לְפָנֶיךָ הַיּוֹם, אֶת-הַחַיִּים וְאֶת-הַטּוֹב, וְאֶת-הַמָּוֶת, וְאֶת-הָרָע. “See, I have set before thee this day LIFE and GOOD, and DEATH and EVIL.”

4. Defining “Good Death” If Life = Good & Death = Evil can there truly be such a thing as a “Good” Death?

5. Defining “Good Death” WordNet 2.0 • Good: Adjective: 24 senses • Having desirable or positive qualities especially those suitable for a specified thing (vs. bad) • Morally admirable (vs. evil) • Promoting or enhancing well-being (beneficial) • Agreeable or pleasing

6. Defining “Good Death” • Good Death • A death that has desirable or positive qualities? • A death that is morally admirable? • A death that promotes or enhances well-being (beneficial)? • A death that is agreeable or pleasing? Or • Making the best of an “undesirable” situation

7. Defining “Good Death” R Smith, ed, British Med J 320:129-30, 2000. Principles of a Good Death • To know when death is coming and to understand what can be expected • To be able to retain control of what happens • To be afforded dignity and privacy • To have control over pain relief and other symptoms • To have choice and control over where death occurs • To have access to information and expertise of whatever kind is necessary

8. Defining “Good Death” R Smith, ed, British Med J 320:129-30, 2000. Principles of a Good Death • To have access to spiritual or emotional support • To have access to hospice care in any location • To have control over who is present and shares the end • To be able to issue advance directives which ensure wishes are respected • To have time to say goodbye and control the timing • To be able to leave when it is time to go, and not have life prolonged pointlessly

9. Defining “Good Death” K Steinhauser, et al, Ann Int Med 132:825, 2000. “In Search of a Good Death: Observations of Patients, Families, and Providers” 6 Major Components Identified • Pain and Symptom Management • Clear decision making • Preparation for Death • Completion • Contributing to others • Affirmation of the whole person

10. Defining “Good Death” D Carr, Rutgers University, 2000. “A Good Death for Whom?” Introduction summarizes literature on “good death” • Minimizes pain • Matches patient and family preferences • Maintaining relationships with loved ones • Accepting one’s impending death • Dying at the end of a long and fulfilling life • Not feeling like a burden to loved ones

11. “Dying Well” Ira Byock, MD • Perhaps a better goal than a “good death” • Death is viewed as the final stage of life, during which continued growth and development can occur. • In addition to relief of physical and emotional symptoms additional landmarks that one should strive to achieve include: • Asking and accepting forgiveness • Expressing love • Acknowledging self-worth • Saying good-bye

12. How can we assist patients who are terminally ill in “dying well” or achieving a “good death”?

13. Medicare Hospice Benefit Eligibility Requirements (Sec 418.22) “The certification must specify that the individual’s prognosis is for a life expectancy of 6 months or less if the terminal illness runs its normal course.”

14. Medicare Hospice Benefit Benefits Protection and Improvement Act (BIPA) 2000 Certification of terminal illness of an individual who elects hospice “shall be based on the physician’s or medical director’s clinical judgement regarding the normal course of the individual’s illness.”

15. Care of the Terminally Ill “At each stage in an illness, the physician must ascertain whether a fatal outcome is inevitable….” Isselbacher KJ, Adams RD, Braunwald E, et al: The Practice of Medicine. In: Isselbacher KJ, Adams RD, Braunwald E, et al (eds): Harrison’s Principles and Practice of Medicine, 9th edition. New York: McGraw Hill, 1980.

16. Determining Prognosis Clinical Progression of Disease • Multiple Hospitalizations, ED visits, or increased use of other health care services • Serial physician assessments, laboratory or diagnostic studies consistent with disease progression • Changes in MDS in LTC facilities • Progressive deterioration identified by home health care Kinzbrunner BM: Predicting Prognosis: How to Decide when End-of-Life Care is Needed. Chapter 1 in: Kinzbrunner BM, Weinreb NJ, Policzer J: 20 Common Problems in End-of-Life Care. New York, McGraw Hill, 2001.

17. Determining Prognosis Changes in Functional Status • Cancer Patients • PPS < 50 or ECOG > 3 • PPS < 60 or ECOG > 2 with symptoms • Decline in PPS of at least 20 units in 2-3 months • Non-Cancer Patients • Dependence in at least 3/6 Activities of Daily Living • PPS < 50 Kinzbrunner BM: Predicting Prognosis: How to Decide when End-of-Life Care is Needed. Chapter 1 in: Kinzbrunner BM, Weinreb NJ, Policzer J: 20 Common Problems in End-of-Life Care. New York, McGraw Hill, 2001.

18. Palliative Performance Scale (PPS)

19. Determining Prognosis Unintentional Weight Loss • > 10% of normal body weight • Body Mass Index (BMI) < 22 kg/m2 Kinzbrunner BM: Predicting Prognosis: How to Decide when End-of-Life Care is Needed. Chapter 1 in: Kinzbrunner BM, Weinreb NJ, Policzer J: 20 Common Problems in End-of-Life Care. New York, McGraw Hill, 2001.

20. Determining Prognosis Intangible Factors • Patient’s personal goals and approach to his or her disease • Burden of investigation and treatment vs. potential gains for the patient Kinzbrunner BM: Predicting Prognosis: How to Decide when End-of-Life Care is Needed. Chapter 1 in: Kinzbrunner BM, Weinreb NJ, Policzer J: 20 Common Problems in End-of-Life Care. New York, McGraw Hill, 2001.

21. Determining Prognosis Cancers Non-Malignant Diseases • End-stage cardiovascular disease and congestive heart failure • End-stage chronic obstructive pulmonary disease • End-stage Dementia and other end-stage neuro-degenerative diseases • End-stage cerebrovascular disease • Adult Failure to Thrive Kinzbrunner BM: Predicting Prognosis: How to Decide when End-of-Life Care is Needed. Chapter 1 in: Kinzbrunner BM, Weinreb NJ, Policzer J: 20 Common Problems in End-of-Life Care. New York, McGraw Hill, 2001.

22. Care of the Terminally Ill “Pain should be adequately controlled, human dignity maintained, and isolation from family avoided. These last two, in particular, tend to be overlooked in hospitals where the intrusion of life-sustaining apparatus can so easily detract from attention to the whole person….” Isselbacher KJ, Adams RD, Braunwald E, et al: The Practice of Medicine. In: Isselbacher KJ, Adams RD, Braunwald E, et al (eds): Harrison’s Principles and Practice of Medicine, 9th edition. New York: McGraw Hill, 1980.

23. Professional Barriers Inadequate knowledge base. Fear of potential addiction. Inadequate pain assessment. Excessive state and federal regulations. Fear of respiratory depression with opioids. Pt/Family Barriers Inadequate knowledge base. Fear of potential addiction. Pts reluctance to report pain. Fear that more pain = disease progression Fear they will not be believed or will be viewed difficult and complainers. Pts reluctance to take opioids. Barriers to Effective Pain Management

24. Assess PQRST PQRST Reassess Role of Assessment in Pain Management Listen & Believe Pain Pain Management Involve Enhance Quality of Life Cancer pain management slide and lecture program, Pain service, Department of Neurology Memorial Sloan-Kettering Cancer Center, 1990.

25. Morphine and Respiratory Depression • Reduces respiratory rate, alveolar ventilation, response to hypercapnea and hypoxia in normal human subjects. • Chronic administration results in tolerance to respiratory depressant effects • Effective in relieving dyspnea in patients with advanced COPD • Anxiolytic • Preload reduction • Reduces response to hypoxia in carotid body

26. Morphine and Respiratory Depression Bruera et al: Annals of Internal Medicine 1993 • 10 patients on chronic morphine for pain control • Received a 50% increase in morphine dose as a bolus to treat dyspnea. • Study in double-blind cross-over design with placebo for comparison • Results: • Statistically significant improvement in subjective dyspnea ( p < 0.01) • No change in O2 saturation or respiratory rate Bruera E, et al: Subcutaneous morphine for dyspnea in cancer patients. Ann Int Med 119:906, 1993.

27. Morphine and Respiratory Depression Kinzbrunner and Tanis: ASCO Proceedings 2004 • 8680 terminally ill cancer patients admitted to hospice • Pain level on admission directly correlated with survival • LOS: no pain-39 (20) days; mild pain-38 (19) days; • Moderate pain-34 (16) days; severe pain-29 (13) days • Evaluation of survival based on pain reduction following 48 hours of treatment • Severe pain to < 5: 35 (18) days vs. > 5: 27 (12) days • All other sub-groups with no significant difference • In no case was survival shorter in the group in which pain was treated effectively • Aggressive pain management on admission to a hospice program shows no evidence of shortening life expectancy, and may, at least for patients with severe pain, extend life for a short, but significant time period.

28. Care of the Terminally Ill “The physician should provide or arrange for emotional, physical, and spiritual support, and must be compassionate, unhurried, and open.” Isselbacher KJ, Adams RD, Braunwald E, et al: The Practice of Medicine. In: Isselbacher KJ, Adams RD, Braunwald E, et al (eds): Harrison’s Principles and Practice of Medicine, 9th edition. New York: McGraw Hill, 1980.

29. TOTAL PAIN The Portenoy Model Neuropathic Mechanisms Psychosocial Influences Somatic or Visceral Nociceptive Pain Total PAIN Social/Family Functioning Psychological State & Traits Suffering Loss of Work Financial Concerns Physical Disabilities Fear of Death Source: Portanoy R., Practical aspects of pain control in the patient with cancer. CA-A Journal for Clinicians. 38:332, 1998

30. Medicare Hospice Benefit Hospice must provide the following services: • Levels of care: • Home, inpatient, continuous, respite • Nursing care • Medical care • in coordination with the primary MD • Certified nursing assistant care

31. Medicare Hospice Benefit Hospice must provide the following services: • Psychosocial care • Spiritual care • Bereavement counseling • All medications related to the terminal illness • Medical supplies and DME • Any consulting services (physician, PT, OT, etc.) as indicated in the plan of care

32. Care of the Terminally Ill “Physicians also must be prepared to deal with the feelings of guilt that almost invariably afflict the members of a family when parent or chld or spouse has died. They must be assured that everything possible has been done.” Isselbacher KJ, Adams RD, Braunwald E, et al: The Practice of Medicine. In: Isselbacher KJ, Adams RD, Braunwald E, et al (eds): Harrison’s Principles and Practice of Medicine, 9th edition. New York: McGraw Hill, 1980.

33. Principles of Symptom Management • Maintain a problem solving approach: Assess & Reassess • Treat all symptoms,including psychosocial and spiritual, as prioritized by the patient and family • Consider invasive procedures for diagnosis or treatment when such procedures will have a direct positive impact on the symptom being treated. Walsh TD: Symptom control in patients with advanced cancer. Am J Hospice and Pall Care 7(6):20, 1990.

34. Principles of Symptom Management • Anticipate events; avoid symptoms if possible • Use pharmacological therapy wisely: • Choose medications with care • Choose routes based on patient need • Choose reasonable starting doses and titrate • Use appropriate combinations • Avoid polypharmacy Walsh TD: Symptom control in patients with advanced cancer. Am J Hospice and Pall Care 7(6):20, 1990.

35. Principles of Symptom Management • Meet the needs of the patient and family

36. Tube Feeding in Patients with Dementia:A Review of the Evidence Review of published evidence regarding BENEFITS of tube feedings: • No reduction in aspiration pneumonia risk • No effect on clinical markers of nutrition • No improvement in patient survival • No improvement or prevention of decubitus ulcers • No reduction in infection risk • No improvement in functional status or slowing of decline • No improvement in patient comfort Finucane TE, Christmas C, Travis K, JAMA 282:1365, 1999

37. Tube Feeding in Patients with DementiaA Review of the Evidence Review of published evidence regarding HARMFUL effects of tube feedings: • Mortality • Perioperative mortality 6-24% • 30 day mortality 2-27% • 1 year mortality > 50% • Aspiration 0-66% Local infection 4-16% • Occlusion 2-34% Leaking 13-20% • 2/3 of NG tubes require replacement Finucane TE, Christmas C, Travis K, JAMA 282:1365, 1999

38. Care of the Terminally Ill “There is no ironclad rule that the patient must be told ‘everything,’ even if he or she is an adult and the head of a family. How much the patient is told will depend on the patient’s own desire and character, the wishes of the family, the state of the patient’s affairs, and perhaps religious convictions.” Isselbacher KJ, Adams RD, Braunwald E, et al: The Practice of Medicine. In: Isselbacher KJ, Adams RD, Braunwald E, et al (eds): Harrison’s Principles and Practice of Medicine, 9th edition. New York: McGraw Hill, 1980.

39. Breaking Bad News

40. Care of the Terminally Ill “No problem is more distressing than that presented by the patient with an incurable disease, particularly when the death is imminent or inevitable….The physician must be prepared to deal with the expiatory attitude of the family when a member becomes gravely or hopelessly ill.” Isselbacher KJ, Adams RD, Braunwald E, et al: The Practice of Medicine. In: Isselbacher KJ, Adams RD, Braunwald E, et al (eds): Harrison’s Principles and Practice of Medicine, 9th edition. New York: McGraw Hill, 1980.

41. Care of the Terminally Ill Who is distressed?

42. Care of the Terminally Ill Who is distressed? • The physician

43. Care of the Terminally Ill Who is distressed? • The physician Who thinks the patient is hopelessly ill?

44. Care of the Terminally Ill Who is distressed? • The physician Who thinks the patient is hopelessly ill? • The physician

45. Care of the Terminally Ill Who is distressed? • The physician Who thinks the patient is hopelessly ill? • The physician How can the physician provide the patient with hope if s/he is distressed and thinks the patient is hopelessly ill?

46. Care of the Terminally Ill HOPE: Physician’s Responsibility • End of Life Care • Goals of Care: Symptom Management • Provide HOPE by setting achievable goals with patients and families while avoiding unrealistic expectations • Focus on symptoms and quality of life

47. Care of the Terminally Ill “One thing is certain; It is not for you to don the black cap and, assuming the judicial function,take hope away from any patient…hope that comes to us all.” Sir William Osler Isselbacher KJ, Adams RD, Braunwald E, et al: The Practice of Medicine. In: Isselbacher KJ, Adams RD, Braunwald E, et al (eds): Harrison’s Principles and Practice of Medicine, 9th edition. New York: McGraw Hill, 1980.