Palliative Care

1. Palliative Care Stephen Bernard, MD, FACP Chip Baker RN, MS, NP-C

2. The Nature of Suffering and the Goals of Medicine -- Eric J. Cassell The relief of suffering and the cure of disease must be seen as twin obligations of a medical profession that is truly dedicated to the care of the sick. Physicians� failure to understand the nature of suffering can result in medical intervention that, though technically adequate, not only fails to relieve suffering but becomes a source of suffering itself.

3. What is palliative care? Interdisciplinary care to improve quality of life for patients with advanced illness and for their family. pain and symptom management emotional and spiritual support help with difficult treatment decisions Palliative care is the model of clinical excellence when curative care has become ineffective and inappropriate. It is . . .Palliative care is the model of clinical excellence when curative care has become ineffective and inappropriate. It is . . .

4. Palliative Care Pain Management Anorexia/Cachexia Nausea and vomiting Dyspnea Constipation/Bowel Obstruction Delirium

5. What patients want Patients with life-limiting chronic illness (n=126) say their primary goals are: receiving adequate pain management avoiding prolongation of dying achieving sense of control relieving burdens strengthening relationships Singer PA et al. JAMA 1999; 281:163-168

6. Patient Concerns Pain (80%) Fatigue (90%) Weight Loss (80%) Lack of Appetite (80%) Nausea, Vomiting (90%) Anxiety (25%) Shortn�s of Br�th. (50%) Confus�n-Agitation (80%)

7. Honest communication �Being honest is a big deal. She never had a clue that she was that close to the end. I think doctors should have told her that death was close. She never had the chance to say good-bye.� -- recently bereaved family member

8. When is palliative care given?

9. Hospice and Palliative Care Hospice < 6 months prognosis �if the disease follows its expected course�Narrower definition of interventions Home, inpatient facility Palliative Care Intervention early, no time frame Concurrent with active treatment Can include interventions such as radiotherapy Hospital, home, or nursing facility 

10. UNC Palliative Care Service Walter (Chip) Baker Stephen Bernard Tony Caprio June Dixon Laura Hanson Renae Stafford Gary Winzelberg

11. UNC Palliative Care Consults � New Patients Served New Patients Served: 2002 � 47 patients 2003 � 110 patients 2004 � 142 patients 2005 � 143 patients 2006 � 220 patients 2007 � 192 patients (total visits = 551) 2008 � est. 325 patients (total visits = 870)

12. Pall. Care Program Demographics

13. Comparison UNC, Mt Sinai Palliative Care Programs--I

14. Comparison UNC, Mt Sinai Palliative Care Programs II

16. Pall. Care Program Reasons for Consult 2002-2005

17. Pall. Care Program Patient by Service-2002

18. UNC Palliative Care Consults by Service - 2007

19. UNC Palliative Care Consults by Disease Group - 2007

20. Outcomes of Consultation-UNC Palliative Care Service 2002 and 2005 ( as %)

21. Mt. Sinai, Results of Pall Care Consultation

22. Improvement in Symptoms for 2500 Mount Sinai Hospital Patients Followed by the Palliative Care Service (6/97-10/02) To demonstrate the impact of hospital-based palliative care services, we will show you data from our own program and from other programs. The Mt. Sinai Hospital program began collecting patient symptom data in 1997, and they have demonstrated an impact on symptom scores for pain, nausea and dyspnea; improvements are greatest for patients with severe symptoms. At Mt. Sinai Hospital in New York, the inpatient palliative care service has seen patients since 1997. Average symptom scores decline from initial to final evaluations for pain, nausea and shortness of breath, especially when these symptoms are severe.To demonstrate the impact of hospital-based palliative care services, we will show you data from our own program and from other programs. The Mt. Sinai Hospital program began collecting patient symptom data in 1997, and they have demonstrated an impact on symptom scores for pain, nausea and dyspnea; improvements are greatest for patients with severe symptoms. At Mt. Sinai Hospital in New York, the inpatient palliative care service has seen patients since 1997. Average symptom scores decline from initial to final evaluations for pain, nausea and shortness of breath, especially when these symptoms are severe.

23. UNC Pall. Care Program Symptom Scores We have also demonstrated impact of our service on symptom scores. We track all symptoms using a 5-point scale during each day of service. Average symptom scores decrease from Day 1 to Day 7, and we have greatest impact on symptoms of pain and shortness of breath.We have also demonstrated impact of our service on symptom scores. We track all symptoms using a 5-point scale during each day of service. Average symptom scores decrease from Day 1 to Day 7, and we have greatest impact on symptoms of pain and shortness of breath.

24. UNC Palliative Care Consults � Disposition 2002

25. UNC Palliative Care Consults � Disposition 2007

26. Disposition of Pts on UNC Pall Care Consultation Service-2002; 2007 (as %)

27. Variable Cost/Day: PC Cases vs. NonPC Controls

28. Economic Impact of Palliative Care-UNC, 2008

29. PSCP target population Patients with life-limiting incurable diseases Patients with severe pain and other symptoms Patients with severe psychological or spiritual suffering

30. Website for Conversion of Opioids http://www.hopweb.org/

31. Palliative Care Competencies Chip Baker RN, MS, NP-C August 2008

32. Palliative Care Competencies Palliative care is practiced with specific knowledge and skills including: Communication Symptom Management Psychosocial and spiritual support Medical and social service coordination

33. Case 1 38 yo female with PMHx significant for myasthenia gravis dx in 2005. Refractory to all chemotherapy. Bed bound, anorexic, on trach collar with frequent mucous plugging. She has considered stopping treatment and states that she is �tired� and �wants to die�.

34. Case 1 Challenges Moved from California to NC for treatment which has ultimately failed Husband not supportive, but wants her to �keep fighting� 2 children - aged 6 (at home) and 15 (back in California with her mother) Refusing Plex treatments at times with resulting symptom flares

35. Case 1 Celexa 20mg PO QD Fentanyl 25mcg patch Atrovent nebs q4h Percocet 5/325 ii tabs PO q4h prn Zofran 4mg IV q8h prn Klonopin 0.5mg PO TID prn Ambien 5mg Po QHS prn

36. Case 1 ROS HAs with fentanyl patch but not with IV Anxious and Fatigued N&V intermittent with flares secondary to chemo Cough with chest tightness and pain PE RUE swollen, warm w/erythema, exquisite tenderness 40% Trach collar; POX 97%; RR 26-30 Lungs with diffuse bilateral rales and rhonchi Self suction x 4 during exam

37. Case 1 Issues Symptom management Pain Dyspnea Anxiety Depression Goals of care Is Clinical Depression driving GOC? Discharge Disposition

38. Case 1 Plan Psych consult to R/O clinical depression Aggressive Symptom Management Switch to all IV fentanyl � 25mcg q3hrs prn Tylenol 1g PO Tid Scheduled Zofran Scheduled Klonopin 0.5mg PO q12h Goals of care Conversation with pt, mother (on phone from California), nurse, Neurology, and Psychiatry

39. Case 1 Outcome Placed on comfort care Pt taken off trach and went home that night. Hospice services started next day. She died 9 days later.

40. Case 1 Question to consider: When is it grief vs. depression?

41. Grief vs. Depression Grief: Distress related to loss �a normal response Some physical symptoms of distress Still able to look towards the future Depression: Generalized distress � loss of interest, pleasure Somatic distress plus hopelessness, guilt, suicidal ideation No sense of positive future Slide Note Let�s look at elements of grief vs. elements of depression. Grief is a normal response to a specific loss or a set of losses. Depression is more a generalized distress, with decreased or little interest and pleasure in life in general. In grief as in depression, there are physical symptoms. In depression, the physical symptoms are present and can be more severe or debilitating. In addition, hopelessness, guilt, and sometimes suicidal ideation are present. In grief, people are still able to look towards the future. In depression, there really isn�t much positive sense of future. Trainer Suggestion How do these symptoms relate back to the case? The patient did not seem to have lost interest in everything�he was still interested in seeing his family and in completing a memory book for his children He had physical symptoms�insomnia, decreased energy, tightness in chest. Some of these were hard to sort out from the symptoms of his physical illness. He did have events in the future that he was looking forward to.Slide Note Let�s look at elements of grief vs. elements of depression. Grief is a normal response to a specific loss or a set of losses. Depression is more a generalized distress, with decreased or little interest and pleasure in life in general. In grief as in depression, there are physical symptoms. In depression, the physical symptoms are present and can be more severe or debilitating. In addition, hopelessness, guilt, and sometimes suicidal ideation are present. In grief, people are still able to look towards the future. In depression, there really isn�t much positive sense of future. Trainer Suggestion How do these symptoms relate back to the case? The patient did not seem to have lost interest in everything�he was still interested in seeing his family and in completing a memory book for his children He had physical symptoms�insomnia, decreased energy, tightness in chest. Some of these were hard to sort out from the symptoms of his physical illness. He did have events in the future that he was looking forward to.

42. Grief vs. Depression Grief: Associated with disease progression Retains capacity for pleasure Still able to express feelings and humor Depression: Advanced disease and pain Change in capacity to enjoy life or former pleasures Bored, lack of interest and expression Slide Note In the scientific literature, grief has been linked with disease progression, whereas depression is associated more with pain that hasn�t been adequately treated, or with far advanced disease. People who are grieving still retain some capacity for pleasure, whereas people who are depressed have a marked shift in their enjoyment of life or former pleasures. People who are grieving are able to express their feelings with a range of emotions; they can still laugh. People with depression often have a flat, expressionless affect and lack a full range of emotional response. Trainer Suggestion We don�t have enough information to relate all these symptoms back to the case, but you could ask the group if any of these apply to our case. The first one about advanced disease does apply to the patient. Also, the patient is physically unable to enjoy former pleasures.Slide Note In the scientific literature, grief has been linked with disease progression, whereas depression is associated more with pain that hasn�t been adequately treated, or with far advanced disease. People who are grieving still retain some capacity for pleasure, whereas people who are depressed have a marked shift in their enjoyment of life or former pleasures. People who are grieving are able to express their feelings with a range of emotions; they can still laugh. People with depression often have a flat, expressionless affect and lack a full range of emotional response. Trainer Suggestion We don�t have enough information to relate all these symptoms back to the case, but you could ask the group if any of these apply to our case. The first one about advanced disease does apply to the patient. Also, the patient is physically unable to enjoy former pleasures.

43. Grief vs. Depression Grief: Comes in waves Passive wish for death Can cope with distress on own or with supportive listening Depression: Constant, unremitting Intense and persistent suicidal ideation Requires intervention � medication, therapy Slide Note Grief is intermittent and often comes in waves, whereas depression is constant. The clinical diagnosis of depression is depressed mood or anhedonia that lasts 2 weeks or more. In grief there can be a passive wish for death, much like the statement made by our patient, �I can�t go on like this anymore.� We will want to explore such statements with our patients to determine if their wish is more active, i.e., if they have a plan, intent, and the means to carry out the plan. If the suicidal thoughts are persistent and active, the patient has gone beyond a normal grief response. With grief, patients can often cope with the help of a supportive listener or with counseling. However, as mentioned earlier, we might also offer medication to someone experiencing grief, especially if the grief is severe or prolonged, or if it is impairing the patient�s functioning and his or her ability to benefit from support and counseling. Depression should always be treated. Slide Note Grief is intermittent and often comes in waves, whereas depression is constant. The clinical diagnosis of depression is depressed mood or anhedonia that lasts 2 weeks or more. In grief there can be a passive wish for death, much like the statement made by our patient, �I can�t go on like this anymore.� We will want to explore such statements with our patients to determine if their wish is more active, i.e., if they have a plan, intent, and the means to carry out the plan. If the suicidal thoughts are persistent and active, the patient has gone beyond a normal grief response. With grief, patients can often cope with the help of a supportive listener or with counseling. However, as mentioned earlier, we might also offer medication to someone experiencing grief, especially if the grief is severe or prolonged, or if it is impairing the patient�s functioning and his or her ability to benefit from support and counseling. Depression should always be treated.

44. Case 2 71 yo male with PMHx sig for stage IV NSC Lung Cancer with metastases to thoracic spine, cerebellum, and liver. Post combination radiation/chemo. Respiratory arrest in the field. Intubated and transferred to MICU. Stay c/b probable aspiration pneumonia and intractable back pain. Decision made by family for terminal ventilator wean.

45. Case 2 Challenges Requiring high dose Opiates Large supportive family Decisions made as a family Family hanging on every movement of patient Erratic movements seen as pain Survival of patient beyond predicted prognosis

46. Case 2 Morphine IV 5mg/hr in MICU titrated up to to 10mg/hr with 2mg boluses q 1hour on the floor

47. Case 2 ROS �Jerking episodes� as per family not witnessed by staff PE Unresponsive Cardiac - RRR - 90 Breathing with rattle � RR 14 even Skin warm and dry Widely scattered, brief UE and LE dyskinetic mvts Witnessed tonic-clonic episode

48. Case 2 Issues Symptom management Is this pain? Family support and education

49. Case 2 Plan Secretions � Scopolomine 1.5mg patch Myoclonus � opiate induced Reduce Morphine IV by 25% to 7mg/hr Continue titration downward or opiate rotation if movements continue Suggest to nursing to use respiratory distress as trigger for Morphine boluses. Family education and support.

50. Case 2 Outcome No more tonic-clonic episodes Minimized dyskinetic movements Family verbalized less anxiety Pt died in 3 days 10 days after extubation

51. Case 2 Question to consider: When is opiate rotation useful?

52. OPIOID CLEARANCE AND ACTIVITY

53. Case 3 80 yo female with nonoperable pancreatic mass obstructing the biliary tree. Past medical history unremarkable. Call for assist with symptom mgt, patient/family support and discharge disposition.

54. Case 3 Challenges Relatively clean health history Lives in Halifax county with husband who is 85 and with mild dementia 2 daughters near by to assist with care 3 stents placed/replaced (3/06, 5/06, 5/07) with good results of relieving symptoms Does not want to transition to hospice because does not want to surrender possibility of future re-stenting Refusing SNF placement Goal to get OOB and care for household

55. Case 3 ASA 325mg PO OD Nexium 40mg PO OD Pancrease I PO TID with meals Percocet 5/325 ii tabs PO q4h prn pain Morphine IVP 2mg q2h prn pain

56. Case 3 ROS Nausea with anorexia Constipation Denies pain or pruritis Dizziness when OOB PE Exquisite jaundice � total bili 36.0 Significant deconditioning

57. Case 3 Issues Symptom Management Pain Nausea Anorexia Fatigue Goals of care Are her goals realistically unobtainable? Discharge Disposition

58. Case 3 Plan Pain Change Percocet to Oxycodone elixir Bowel regimen Deconditioning PT/OT eval Nausea Reglan tid Pancrease tid D/C plans

59. Case 3 Outcome Found a hospice agency that would support PT/OT and pursuit of stent replacements for symptom relief (would not pay room and board) D/C home with hospice Died 2 weeks later

60. Case 3 Question to consider: Are all hospices created equal?

61. Case 3 Hospice 2006 49% not-for-profit; 46% for profit Medicare funding Based on area wage index Based on level of care Home $130.79 day Continuous home care $763.36 day Inpatient Respite $135.30 day General inpatient $581.82 day Medicare per patient cap Based on number of patients 2006 mean daily census 45.6 patients 16.2% of providers routinely care for more than 100 persons