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Medical Interventions at the End of Life Life Sustaining Treatment and Other Decisions George J. Giokas, MD, Director for Palliative Care, The Community.

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Presentation on theme: "Medical Interventions at the End of Life Life Sustaining Treatment and Other Decisions George J. Giokas, MD, Director for Palliative Care, The Community."— Presentation transcript:

1 Medical Interventions at the End of Life Life 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 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

11 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 Key Points in End of Life Discussions Discussions 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 Quill, Annals of Internal Medicine, 2009 “Do EVERYTHING”

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 StarvationCachexia AppetiteSuppressed in late phase Suppressed in early phase Body mass indexNot predictive of mortality Predictive of mortality Serum albuminLow in late phaseLow in early phase CholesterolMay remain normalLow Total lymphocyte count Low, responds to refeeding Low, unresponsive to refeeding CytokinesLittle dataElevated Inflammatory disease Usually not presentPresent Response to refeeding ReversibleResistant 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 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 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 1 point MI, CHF, PVD, CVA, Dementia, COPD, PUD, Mild liver disease 2 points Mod-severe CKD, CA w/o mets DM with end-organ damage 3 points Mod-severe liver disease 6 points Metastatic solid CA AIDS 1 point Each decade in age > 40 years Coordination of Hospice and Palliative Care in ESRD. Module 4 ANNA and Kidney end-of-Life Coalition accessed 8/2011 Low score Mod Score High Score Very High Score CCI Points ≤34-56-7≥8 Mortality (per pt-yr) Prognosis from CCI

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 “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” Arnold & Zeidel, NEJM Oct 15, 2009

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

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

49 2009 Dialysis Deaths Utilization of Hospice in ESRD PatientsNumber (%) Number (%) Using Hospice Withdrew from Dialysis 20,854 (26)13,502 (65) Continued Dialysis 59,032 (74)3,410 (6) TOTAL79,886 (100)16,912 (21) Shared Decision-Making in the Appropriate Initiation of and Withdrawal From of Dialysis. Clinical Practice Guideline 2 nd 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 2 nd edition. Renal Physicians Association, October 2010

51 Percent of Decedents Admitted to ICU/CCU During the Hospitalization in Which Death Occurred 2007 Medicare Patients

52 548,000 1999 712,000 2006 2006 98% Mech Vent for medical causes, not surgical

53 15 university affiliated med-surg ICUs across Canada, US, Australia, Sweden age > 18 851 patients receiving mechanical ventilation and expected to stay in ICU at least 72 hours 64 % were successfully weaned 36% died in the ICU approx ½ of those who died had mechanical ventilation withdrawn in anticipation of death



56 Ventilator Withdrawal Protocol Address pressors, artificial hydration and feeding, dialysis, antibiotics, etc. Who should be present, prayer/gathering before removal? Discontinue paralytics and test for return of neuromuscular function Pre-medication for sedation Morphine 2-10 mg IV and start a continuous infusion 1 to 2 mg of midazolam IV (or lorazepam Titrate to the desired state of sedation prior to extubation Have additional medication drawn up and ready Silence all ventilator alarms, O2 monitors, telemetry Extubate or attach T-piece, remove NG/OGTubes Source: GUIDELINES FOR PHYSICIAN STAFF FROEDERT HOSPITAL, MILWAUKEE, WISCONSIN as posted on IPAL-ICU project

57 Determinants of health care workers of the decision to withdraw life support 1300 Canadian ICU MDs & nurses 12 scenarios Most important factors were likelihood of surviving the current episode likelihood of long-term survival premorbid cognitive function age of the patient Lack of consensus In only ONE of 12 scenarios was the same option was chosen by > 50% Opposite extremes of care chosen by > 10% in 8 of 12 scenarios Cook, DJ et al JAMA 1995

58 “First, not only do our patients often have different values and belief systems from our own, but so do our health-care team colleagues. Not to accept this fact undermines our ability to communicate effectively with patients, families, loved ones, surrogates, and colleagues. Second, when we feel strongly about the right or wrong medical decision for a patient in the ICU, we should have insight into our own fallibility and the probability that equally competent health professionals, because of different values and belief systems, might completely disagree with our approach.” Thomas Raffin, MD JAMA 1995

59 Selected Bibliography Pellegrino, E. Decisions to Withdraw Life-Sustaining Treatment. JAMA; 283, 2000: 1065-1067 Rosielle, D. Fast Facts. End of Life / Palliative Resource Education Center. Medical College of Wisconsin Rousseau, P Seventy Hours. JAMA. 300, 2008: 882-883 Quill, TE et al. Discussing Treatment Preferences With Patients Who Want “Everything” Annals of Internal Medicine: 151, 2009:345-349. Quill & Holloway, Time Limited Trials JAMA. 2011; 306:1483-1484 Shah, et al “What Bothers You the Most?” Initial Responses From Patients Receiving Palliative Care Consultation. AM J HOSP PALLIAT CARE 2008; 25: 88-92 Singer, et al. Quality End of Life Care: Patients’ Perspectives. JAMA 1999;281(2):163-168 Ganzini, L. Artificial nutrition and Hydration at the End of Life; Ethics and Evidence. Palliative and Supportive Care: 4, 2006; 135-143 Mitchell, S, et. al. The Risk Factors and Impact on Survival of Feeding Tube Placement in Nursing Home Residents with Severe Cognitive Impairment. Archives of Internal Medicine: 157, 1997;327-332. Quality Collaborative Monroe County Medical Society. Benefits and Burdens of PEG Placement. accessed 11/23/2011

60 Palecek, Teno, et al. Comfort Feeding Only: A Proposal to Bring Clarity to Decision-Making Regarding Difficulty with Eating for Persons with Advanced Dementia. J Am Geriatr Soc 58:580–584, 2010 Sanders, A. The Clinical Reality of Artificial Nutrition and Hydration for Patients at the End of Life. The National Catholic Bioethics Quarterly. Summer 2009 Yamagishi, A et. al. The Care Strategy for Families of Terminal Ill Cancer Patients Who Become Unable to Take Nourishment Orally: Recommendations from a Nationwide Survey of Bereaved Family Members Experiences. Journal of Pain and Symptom Management: 40, 2010: 671-683. ICU-IPAL Project Cook, D et al. Withdrawal of Mechanical Ventilation in Anticipation of Death in the Intensive Care Unit. NEJM: 342:12, 2003; 1123-1132 Cook, D.J., Guyatt, G.H., and Jaeschke, R. "Determinants in Canadian Health Care Workers of the Decision to Withdraw Life Support." JAMA 273 (1995): 738-739 RPA/ASN’s “Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis, 2nd Edition” Arnold and Zeidel. Dialysis in Frail Elders - A Role for Palliative Care. NEJM, 2009; 361:1597-1598 Cohen LM, Ruthazer R, Moss AH, Germain MJ. Predicting six month mortality for patients who are on maintenance hemodialysis. Clinics of Journal of the American Society of Nephrolology. 2010: 5:72- 79 Dash and Mailloux Withdrawing and Withholding of Dialysis. Up to Date. Accessed October 2011 Johnson and Gustin. Acute Renal Failure Requiring Renal Replacement Therapy in the Intensive Care Unit. Journal of Palliative Medicine. 2011; 14: 883-889

61 Tamura, Kovinsky, et. al. Functional Status of Elderly Patients before and after Initiation of Dialysis. NEJM 2009; 361:1539-1547 Salpeter, Luo, et al. Systematic Review of Noncancer Presentations with a Medial Survival of 6 Months or Less. American Journal of Medicine. 2011. 32:22-31 Chen, et al. Occurrence and Treatment of Suspected Pneumonia in Long-Term Care Residents with Advanced Dementia. JAGS. 54: 2006; 290-295. D’Agata et al. Patterns of Antimicrobial Use Among Nursing Residents with Advanced Dementia. Arch Intern Med. 2008:168; 357- 362. Givens, et al. Survival and Comfort After Treatment of Pneumonia in Advanced Dementia. Arch Intern Med. 201: 170; 1102-1107. White, Jocelyn ed. JPM Patient Education: Infections and Use of Antibiotics in Dying Patients. Journal of Palliative Medicine. 2006. Volume 9 Number 1.

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