Medical Interventions at the End of Life Life Sustaining Treatment and Other Decisions

1. Medical Interventions at the End of LifeLife Sustaining Treatment and Other Decisions George J. Giokas, MD, Director for Palliative Care, The Community Hospice Joanne Schlunk, MSW, Director, Mercy Hospice

2. Topics to be covered • Establishing goals of care • Artificial nutrition and hydration • Antibiotics in Advanced Dementia • Pain Management at End of Life • Dialysis – End Stage Renal Disease • Mechanical Ventilation

3. CHE Palliative Care Champions Series Palliative Care Across the Continuum of Illness: An Introduction to Palliative Care Melissa Schepp, MD, FAAHPM, Director, Palliative Care, Saint Joseph’s Hospital Pharmacological Pain Management: Opioids & Other Strategies Donato G. Dumlao, MD, Assistant Professor of Interdisciplinary Clinical Oncology, University of South Alabama-Mitchell Cancer Institute Symptom Management: Nausea, Dyspnea, & other Symptoms Patricia Ford, MD, Medical Director, The Community Hospice Psychosocial Aspects of Palliative Care: Communication with Patients & Families Elizabeth Keene, MA, FT, Vice President, Mission Effectiveness, Saint Mary’s Health System, Lewiston, ME Palliative Care Across the Health System: Different Settings & Levels of Care Victoria Christian-Baggott, MBA, RNC, CNHA, RAC-CT, C-NE Vice President, Clinical Improvement, Continuing Care Management Services Network, CHE

4. Benefit the patient’s assessment of the value or desirability of the treatment’s result Effectiveness the physician’s determination of the capacity of the treatment to alter the natural history of the of the disease Burden the cost, discomfort, pain, and inconvenience of the treatment physician and patient Edmund Pellegrino* JAMA 2/23/2000

5. What Do Patients with Serious Illness Want? Pain and symptom control Avoid inappropriate prolongation of the dying process Achieve a sense of control Relieve burdens on family Strengthen relationships with loved ones Singer et al. JAMA 1999;281(2):163-168 D Meier , CAPC 2009

6. “What Bothers You Most?” Univ of Rochester MC Palliative Care Service 44% Physical Distress pain, dyspnea, anorexia, paresthesias 16% Emotional, spiritual, existential, nonspecific distress depression, hopelessness, frustration, loneliness “What’s the point of all this? 15 % Interpersonal Relationships burden to family; Missing family activities, milestones Family would have to make difficult decisions Shah, et al, American Journal of Hospice Palliative Medicine, April/May 2008

7. “What Bothers You Most?” 15% Dying process “Just want to get this over with” Fear of future physical suffering Sense of not having enough time to do important things 12% loss of function and normalcy Inability to eat and other bodily functions Impossible to continue with work 11% concern regarding location Not being home Being unable to leave hospital 9% Distress over medical providers or treatment “All these different doctors” Med side effect “I don’t like being sleepy”

8. End of Life Treatment Challenges Momentum to Do Something Medically Diagnostic Uncertainty Likely Multi-factorial - Underlying disease (s) / complications / medications How actively is this patient dying?? Burden of diagnostic interventions Burden of Treatments – including location Transition from patient to family as focus of care

9. Symptom Management Challenges End of Life Older age (two-thirds are age 65 years or older) Malnutrition, low serum albumin Frequent autonomic nervous system failure Decreased renal function Borderline cognition Lower seizure threshold (metastatic brain involvement, use of opioids) Long-term opioid therapy Multiple drug therapy Up to Date.com Accessed 12/2011

10. Key Points in End of Life Discussions Is everybody on the same page regarding the patient’s condition & prognosis? Focus on GOALS, then make a recommendation about treatments Emphasize what you ARE doing… you never stop care, you only stop treatments Weissman, Quill, & Arnold Fast Fact # 226 www.mcw.edu/eperc J

11. Key Points in End of Life Discussions Provide information AND • assess the family’s culture, communication and decision-making patterns • Identify significant stakeholders in the patient’s survival their fears, their goals? • Tend to emotions; respond with empathy not just facts Respect the patient & families need for time & support 72 Hours Rousseau JAMA 2008 J

12. “Do Everything” Quill, Annals of Internal Medicine, 2009

13. When did the choices get so hard With so much more at stake? Life gets mighty precious, When there’s less of it to waste Bonnie Raitt

14. “Do EVERYTHING” Quill, Annals of Internal Medicine, 2009

15. Quill, Annals of Internal Medicine, 2009

16. Time Limited Trials Quill & Holloway JAMA Oct 5, 2011

17. “It is easy to lose sight of the fact that not eating may be one of the many facets of the dying process and not the cause” Robert McCann, JAMA Oct 13, 1999

18. Not “dying of starvation” Anorexia – loss of appetite & reduced caloric intake Cachexia – involuntary weight loss of > 10% body weight – muscle, visceral protein catabolized early Starvation – loss of weight with loss of fat – protein spared until late stage Reidy, AAHPM August 2010

19. Thomas, D Clinics in Geriatric Medicine, 2002

20. Tube Feedings in Advanced Dementia Do NOT prevent pneumonia or other infections improve the healing of pressure sores improve the functional outcome of elderly institutionalized residents

21. ANH – potential harm Increased use of restraints Increased pulmonary secretions, pleural effusion, ascites, peripheral edema, Increased urine output Diarrhea Localized skin irritation Potential to divert attention away from the patient

22. Potential Benefits of IV hydration Delirium frequently accompanies end of life distressing to patients and family dehydration, drug accumulation Bruera 2002 51 terminally cancer pts 1000 mls/day vs 100 mls/day 73% v. 49% improvement in hallucinations, myoclonus, fatigue and sedation When used, consider time limited trial Ganzini, Palliative and Supportive Care, 2006

23. Benefits and Burdens of PEG Placement Quality Collaborative Monroe County Medical Society Oct 2010 www.compassionandsupport.org accessed 11/23/2011

24. Strategies for Family Care Relieving Family Members’ Sense of Helplessness and Guilt “I know you did everything” Providing Appropriate Information About Hydration and Nutrition at End of Life Providing Emotional Support for Family Members Concerns Relieving the Patient’s Symptoms Yamagishi, JPSM, 2010

25. Antibiotics at end of life in patients with advanced dementia (NH) Common Occurrence especially closer to death: 45% in last month (pneumonia) Chen J Am Geriatrics 2006 1 large Boston NH 42 % in last 2 weeks resp, gu, gi, skin; 41% parenteral D’Agata & Mitchell Arch Int Med 2008 21 Boston NH’s Associated with improved survival but NOT improved comfort Givens, et al Arch Int Med 2010 22 Boston area NH’s

26. D’Agata & Mitchell Arch Int Med 2008

27. “Survival was prolonged among residents who received antimicrobial treatment compared with those who were untreated. At the same time, our findings suggest that treatment with antimicrobial agents does not improve the comfort of residents with advanced dementia who have pneumonia, and more aggressive care may be associated with greater discomfort.” Givens, et al Archives of Internal Medicine 2010

28. “These observations underscore that advance care planning, before the onset of acute illness, is a critical, modifiable factor in promoting palliation in advanced dementia.” Chen JAGS 2006

29. Antibiotics at End of Life Benefits • life prolongation • ?? comfort • ? improvement in confusion – less likely beneficial as closer to death Burdens • superinfections – yeast, C Diff • IV site – infiltration, bleeding, phlebitis • transfer to another location – agitation, discontinuity • prolongation of dying process • promotion of antibiotic resistance

31. Percent of Patients with Moderate to Severe Symptoms Last 6 months In Patients with Terminal Cancer Seow, et al J Clinical Oncology 2001 as reported in Up to Date.com accessed 12/2011

32. Pain Management at End of Life • Most critical starting point is assessment & reassessment • Important to vary terms used, i.e. pain, discomfort, hurt • Assess at different times of day & in different circumstances • Include visual cues as well as caregiver observations J

33. Assessing Pain Nociceptive – intact nervous system Somatic-pain Visceral Neuropathic – damaged nervous system Pre-existent / Chronic pain syndrome(s) +/or New pain If I were this patient, would I be in pain? Is this delirium ? ?Opioid neuro-toxicity

34. Non-pharmacological Interventions • Relaxation • Guided imagery • Positioning • Massage (if tolerated) • Acupuncture • Heat/Cold packs J

35. When the Patient is Actively Dying Education of caregivers regarding specifics is essential to ensure they understand what is “normal” Educate re: Temperature changes Breathing changes Sensing pre-deceased loved ones/reaching up Glazed eyes Mottling Apnea Restlessness Secretions Withdrawal J

36. Teaching Caregiver Signs of Distress versus Signs of Comfort Distress: Furrowed brow, restlessness, tightly gripping loved ones or covers, groaning Comfort: Brow relaxed, hands relaxed, minimal or no restlessness, look of peace Reassure family that sound and irregularity of breathing does not necessarily indicate discomfort J

37. Stages Of Man ?

38. 2011 US Renal Data System 38% Diabetes 24% Hypertension 15% Glomerulonephritis

39. Age of Prevalent ESRD Patients American Nephrology Nurses Association

40. Annual rate (23%) or > 70,000 deaths High percentage of co-morbidities High in-hospital deaths 8% CPR survival to hospital discharge High Mortality Rate Coordination of Hospice and Palliative Care in ESRD. Module 4 ANNA and Kidney end-of-Life Coalition accessed 8/2011

41. Dialysis in Frail Elders US Nursing Home residents starting dialysis 6/98-10/2000 pre-dialysis function known 1st year 58% residents died 29% decrease in functional status 13% maintained functional status Lower odds for maintaining status Cerebrovascular disease, dementia, dialysis started during hospitalization, low albumin Tamura, Kovinsky, et al NEJM October 2009

42. Advanced age >/= 75 years Comorbidities modified Charleston Morbidity score >/= 8 Marked functional impairment Karnofsky performance status score < 40 Severe chronic malnutrition serum albumin level < 2.5 g/dL Predictors of Poor Prognosis for ESRD Patients Coordination of Hospice and Palliative Care in ESRD. Module 4 ANNA and Kidney end-of-Life Coalition accessed 8/2011

43. Charleston Comorbidity Index Prognosis from CCI Coordination of Hospice and Palliative Care in ESRD. Module 4 ANNA and Kidney end-of-Life Coalition accessed 8/2011

44. Median Survival < 6 months ESRD on dialysis with age > 70 and 2 of the following: • Karnofsky < 50 or dependency in ADLs • CAD, PVD, CHF, or cancer • BMI < 19.5 or albumin < 2.2 mg/dl • Residence in SNF • ICU admission • Hip fx with inability to ambulate Salpeter, Luo, et al American Journal of Medicine, October 2011

45. Arnold & Zeidel, NEJM Oct 15, 2009 “Conservative therapy should be discussed, not as a last resort when there is “nothing left to do,” but as a clear option that might be most effective in promoting patient goals”

46. “For patients with poor prognosis for long-term survival, such as those with advanced age, decreased functional status, malnutrition, and co-morbidities, there is no evidence that the initiation of dialysis prolongs survival compared to nondialytic treatments” Salpeter, Luo, et al American Journal of Medicine, October 2011

47. Shared Decision-Making in the Appropriate Initiation of and Withdrawal From of Dialysis. Clinical Practice Guideline 2nd edition. Renal Physicians Association, October 2010 Consider forgoing dialysis for those with stage 5 CKD older than 75 with 2 or more poor prognostic indicators: • MD would not be surprised if patient died within the next year • High co-morbidity score • Low performance score (Karnofsky < 40) • Chronic malnutrition – albumin < 2.5 Or if dialysis cannot be done safely, • Dementia or hypotension

48. Withdrawal of Dialysis n = 88 Median survival = 8 days Catalano C et al, Withdrawal of renal replacement therapy in Newcastle upon Tyne: 1964-1993. Nephrol Dial Transplant. 1996 Jan;11(1):133-9.

49. 2009 Dialysis Deaths Utilization of Hospice in ESRD Shared Decision-Making in the Appropriate Initiation of and Withdrawal From of Dialysis. Clinical Practice Guideline 2nd edition. Renal Physicians Association, October 2010

50. Withdrawal of Dialysis – Palliative Issues in Ensuring Comfort Communication Anticipate and treat symptoms early Pain (generally only if a pre-existing problem) Nausea Restlessness, confusion Dyspnea – fluid balance, pneumonia Pruritus Myoclonus, twitching Shared Decision-Making in the Appropriate Initiation of and Withdrawal From of Dialysis. Clinical Practice Guideline 2nd edition. Renal Physicians Association, October 2010