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George J. Giokas, MD Director for Palliative Care, The Community Hospice

Medical Interventions at the End of Life Life Sustaining Treatment and Other Decisions December 12, 2013. George J. Giokas, MD Director for Palliative Care, The Community Hospice ggiokas@communityhospice.org. Topics we’ll cover. Trends in End of Life Care Prognostication

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George J. Giokas, MD Director for Palliative Care, The Community Hospice

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  1. Medical Interventions at the End of LifeLife Sustaining Treatment and Other DecisionsDecember 12, 2013 George J. Giokas, MD Director for Palliative Care, The Community Hospice ggiokas@communityhospice.org

  2. Topics we’ll cover Trends in End of Life Care Prognostication Communication & Establishing goals of care Core Comfort Medicines Noisy Respiratory Secretions – Death Rattle Artificial Nutrition and Hydration Implantable Cardiac Electronic Devices The presenter has no relevant financial disclosures

  3. Learning Objectives At the completion of this webinar the learner will be: • Able to describe the paradigm of benefit, effectiveness, and burden of interventions • Aware of specialty societies’ recommendations on the use of feeding tubes in patients with advanced dementia • Able to identify palliative and hospice issues in the care of patients with implantable cardiovascular devices.

  4. A too-common scenario Frail, multiply ill patient Stressed caregiving system Limited social and medical support at “home” “Predictable crises at unpredictable times” CAPC 2013 ED utilization ---- Hospitalization ---- ICU Crisis Hospice Referral

  5. (hospice use at least 1 month before death)

  6. Increase in ICU utilization prior to death 2000-2009 40% of COPD pts in ICU w/in 1 month of death 22% of dementia patients in ICU “ “ 40% of patients referred to Hospice w/in 3 days of death had ICU stay that preceded referral Teno JAMA 2013 20% of ALL deaths in the US occur in the ICU or shortly after an ICU stay Angus CritCareMed 2004

  7. % of Medicare Patients with ICU Stay During Terminal Hospitalization 2007

  8. 2010 2003-07 Dying in Hospital 25% 29% Enrolled in Hospice last month of life 61% 55% Seeing 10 or more MDs last 6 months 58% 46% ICU Admission last month of life 29% 24% Hospice Referral last 3 days of life 11% 8% Chemo last 2 weeks of life 6% 6% LST (vent, FT, CPR) last month of life 9% 9% Medicare patients; Analyses controlled for pt age, sex, race, tumor type and non-cancer chronic conditions Sept 2013

  9. US Adults sampled 1900 interviews Landlines and cell phones English and Spanish speaking staff

  10. http://www.pewforum.org/2013/11/21/views-on-end-of-life-medical-treatments/http://www.pewforum.org/2013/11/21/views-on-end-of-life-medical-treatments/

  11. End of Life Treatment Challenges The “conversation” has frequently not occurred Medical Momentum (Default) to Do Something Diagnostic Uncertainty Is this patient actively dying?? Multi-factorial: - Underlying disease (s) - complications treatments/medications Burden of diagnostic and treatment interventions Focus of care patient …family ..care professionals

  12. “You got to be very careful if you don’t know where you’re going, because you might not get there.” Yoggi Berra

  13. Prognostication MDs tend to overestimate; especially if close relationship (N Christakos) Clinical Predictive Rules – Walther (hospitalized patients), Mitchell (NH Dementia), Charlson (ESRD), Palliative Prognostic Index e-prognosis.org Estimates of mortality in a population of patients Cancer patients …In later stages patient-specific characteristics are more important than tumor-related factors Glare et al JPM 2008 Common factors performance status, advanced age, malnutrition, comorbid illness, increasing organ dysfunction, hospitalization for acute decompensation (Salpeter,AJM 2011) “Would I be surprised if this patient died in the next year” The wavering and uncertain course for COPD/CHF may explain the frequency of intensive interventions compared to cancer dx’s (Weissman)

  14. Lunney, Lynn, & Hogan as cited CanMedAssocJrnl Aug 2013

  15. Advanced Dementia 22 Boston NHsMitchell, Teno NEJM Oct 2009 2003 – 2007 300 residents mean age 85 Mean survival was 1.3 years risk of death within 6 months was 25% Pneumonia 6 month mortality 46.7% Febrile episode 6 month mortality 44.5% Eating problem 6 month mortality 38.6%

  16. Mitchell et al JAMA 2004

  17. Prognostication Support Study 6 month median survival estimate day prior to death lung cancer 0 % 5 of 7 days before death for COPD 40 % Survival to hospital discharge if mech ventilated lung cancer 38% COPD 76% Claessens, et al J AM Geriatr Soc 2000 Fried, et al JAMA Sept 2012

  18. Communication Pearls James Tulsky, MD Duke Univ. Palliative Care • Assess the patient’s preferences for communication • Ask permission Start with the patient’s agenda • Give information in small-chunks Ask-Tell-Ask • Track both the emotion and the cognitive data you get from the patient • Attend to emotion before giving cognitive information • Articulate empathy explicitly • Stay with the patient and move the conversation forward one step at a time • Less is More

  19. Communicating Prognosis Patient’s Informational Style ready to hear this? accompanied by anyone? cultural Communicate as ballpark rough estimate ranges days to weeks weeks to months Any occasions/goals important to patient? Address Emotion with empathic responses Address function, care needs, location of care

  20. Decision Domains Benefit the patient’s assessment of the value 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, and inconvenience of the treatment physician and patient E Pellegrino JAMA 2/23/2000

  21. “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

  22. “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”

  23. ICU Families’ Difficult Decisions Tensions Responsibility for the loved one’s death A chance of recovery Family well-being Coping Recalling prior discussions Sharing decisions with family Delay/defer decisions Spiritual/religious practices Story-telling Schenker, et al. J Gen Int Med 2012

  24. What helps surrogates? Recognize the stress surrogates experience Normalize their stress Facilitate discussions between family members with differing views Allow time for decisions Family meeting rooms Time limited trials Vig, et al Jrnl Pain and Symp Management Nov 2011 Schenker et al J Gen Int Med 2012

  25. What helps surrogates? Avoid different information from multiple clinicians Receiving recommendations from clinicians Telling them they made the right decision afterwards Vig, et al Jrnl Pain and Symp Management Nov 2011 Schenker et al J Gen Int Med 20121

  26. “They’re in DENIAL” Too overwhelmed, exhausted to understand Lack of trust Protecting family – cultural norms Undertreated anxiety or depression delirium Patients may not understand the prognostic information, Language or cultural barriers Patients may be confused by differing estimates of prognosis Given mixed messages Clinician back-pedals when we’re uncomfortable Denial may be healthy coping Jacobsen, et al Jrnl Pal Med Jan 2013

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

  28. Do EVERYTHING! Acknowledge and follow the patient’s treatment philosophy so that patient / family feel heard and respected. Stop regularly discussing DNR or limiting Rxs’ unless this issue is raised by the pt/family or change in condition Address discomfort within team: Communicate the reasoning behind the treatment decision. Find other patient-centered goals (pain, dyspnea, support) Time Limited Trials (ICU, dialysis, vasopressors) Quill Annals of Internal Medicine 2009

  29. ICU Professional Conflict Slide courtesy of Steven Miles, MD Univ of Minnesota Conflicts seen by 72% of ICU staff. (2/3 are severe). During end-of-life care: Lack of psychological support, Absence of staff meetings Problems with decision-making. Am J Resp & Crit Care Med 2009;180:853-60. One-day cross-sectional survey of ICU clinicians. 7,498 ICU staff members (323 ICUs in 24 countries).

  30. Key Points in End of Life Discussions Is everybody on the same page regarding the patient’s condition & prognosis? Focus on GOALS, then recommendations about treatments Emphasize what you ARE doing… you never stop care, you only stop treatments Respect the patient & families need for time & support Weissman, Quill, & Arnold Fast Fact # 226 www.mcw.edu/eperc Rosseau Seventy Two Hours JAMA 2008

  31. In truth, reverence for life permeates the care that I and colleagues in our field provide. …. Reverence for life does not include hastening death, nor does it include forcing people to suffer as they die. As a clinician, it does require me to show up -- with all the resources and skills my training and experience provide -- and to lean forward, listening to the persons before me and learning how I can best be of service. Ira Byock The Best Care Possible 2012

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

  33. 4 Essential Drugs • 95 palliative care clinicians in 9 countries • (UK, Europe, New Zealand, S America) • Inpatient palliative care specialists • Preferred Rx in last days of life for cancer patients • anxiety, dyspnea, nausea and vomiting, pain, respiratory tract secretions (RTS), terminal restlessness. • Consensus based, not research based Lindqvist et al, J Pall Med Jan 2013

  34. Pain: morphine (71%) Dyspnea/breathlessness: morphine (86%) Anxiety: midazolam (34%) and lorazepam (26%) Nausea and vomiting: metoclopramide (51%) and haloperidol (36%) RTS: hyoscine (hyoscine hydrobromide, hyoscine butylbromide: 67%) and glycopyrronium (25%) Terminal restlessness and agitation: midazolam (40%) and haloperidol (36%) Lindqvist et al, J Pall Med Jan 2013

  35. South Australian Core Meds • Evaluation of the medical literature • Cost (gov’t subsdsidies) • Able to address more than one symptom • Route(s) of administration • Clonazepam • Haloperidol • Hyoscine butylbromide • Metoclopramide • Morphine Tait and Timothy, Journal of Palliative Medicine July 2013

  36. Death Rattle Lokker, et al JPSM June 2013 Systematic literature review – 1062 articles Bronchial secretion (troubling/noisy/terminal), respiratory (tract) secretions, increasing secretions, noisy-retained secretions, terminal secretions, pulmonary rattles, noisy (rattling/moist) breathing (at the end of life), or respiratory symptoms - are we studying the same process? Occurrence 12% - 92%, mean 35%. Patients usually unconscious Median time from the onset of death rattle until death was between 11 and 28 hours Natural history unknown – some placebo trials show decrease in death rattle scores over time; other trials show increase over time The symptom is not resolved in 22%–50% of cases

  37. In a study among nurses, 87% indicated that they felt that death rattle does not distress the dying patient. But may distress the other patients on the ward Distress as reported by relatives on themselves 5% ‘‘not so distressing’’ 15% ‘‘slightly distressing’’ 26% ‘‘distressing’’ 52% ‘‘very distressing’’ 79% of nurses reported distress to themselves

  38. Family PerceptionsShimizu, et al JPSM December 2013 103 Palliative Care Units in Japan; pts died in PCU 663 questionnaires mailed to bereaved family with 390 (61%) response rate 181 (46%) respondents experienced death rattle. Of these, 66% of reported high distress levels to themselves 53% perceived a strong need for improved death rattle care Factors influencing high distress unawareness about death rattle being a natural phenomenon, distressing interpretations of death rattle – drowning, suffocating 50% of family members not educated about death rattle

  39. Anticholinergic Load and RTS Acetyl choline – major neurotransmitter in both central, peripheral nervous system, organs, and muscle Cholinergic effects – sweating, salivary production, diarrhea, bladder emptying, slow heart rate Anticholinergic effects – lack of sweating, dry mouth, constipation, urinary retention, blurred vision, confusion, delirium, rapid heart rate Commonly used anticholinergics Atropine drops, Transdermal scopalamine patch Hyoscyamine (Levsin) Glycopyrrolate (Robinol)

  40. Sheehan Journal of Palliative Medicine 2011

  41. Death Rattle Is Not Associated with Patient Respiratory Distress: Is Pharmacologic Treatment Indicated?Campbell and Yarandi JPM 2013 Prospective observational study - 71 terminal pts; 3 inpatient palliative care and hospice units Death Rattle Intensity Scale (volume) and degree of respiratory distress ….heart rate; resp rate, accessory muscle use; restlessness; grunting at end of expiration; nasal flaring; and fearful facial expression There was no association between intensity of death rattle and respiratory distress Infrequent use of anti-secretory meds; when used had limited effectiveness

  42. “Thus, it remains counterintuitive to prescribe medications with limited effectiveness in the face of no patient distress.” Campbell and Yarandi JPM 2013 “…No evidence to show that any intervention, be it pharmacological or non-pharmacological, was superior to placebo in the treatment of noisy breathing.” Wee B, Hillier R, The Cochrane Collaboration, 2012

  43. “Current evidence does not support the standard use of (anticholinergic) drugs in the treatment of death rattle. …care should focus on communication about the symptom with relatives and others involved in the care of these patients.” “Regarding the symptom as being part of the normal dying process could contribute to the lowering of distress levels of those involved.” Lokker, et al JPSM June 2013

  44. Provision of good oral hygiene & nursing care, including managing uncomfortable smells. Consulting with family members about suctioning Providing frequent explanations that death rattle is a natural phenomenon Understanding family’s interpretations and feelings regarding death rattle and providing emotional support Shimizu, JPSM Dec 2013

  45. Summary Lack of clinical evidence supporting drug Rx Potential for significant harm of drug Rx Educate families and nursing/MD staff IF you feel compelled to Rx with medications Avoid transdermal during last days Avoid co-administration of multiple agents Consider glycopyrrolate Do research and publish a study!

  46. AMERICAN GERIATRICS SOCIETYFeeding Tubes in Advanced Dementia Position Statement May 2013 • Percutaneous feeding tubes are not recommended for older adults with advanced dementia. Careful hand‐feeding should be offered; for persons with advanced dementia, hand feeding is at least as good as tube‐feeding for the outcomes of death, aspiration pneumonia, functional status and patient comfort. Tube feeding is associated with agitation, increased use of physical and chemical restraints, and worsening pressure ulcers. • Efforts to enhance oral feeding by altering the environment and creating patient‐centered approaches to feeding should be part of usual care for older adults with advanced dementia. Older adults with advanced dementia are bed‐bound, unable to ambulate, and have limited, if any, ability to communicate verbally.

  47. 3. Tube feeding is a medical therapy that can be declined or accepted by a patient’s surrogate decision maker in accordance with advance directives, previously stated wishes, or what it is thought the patient would want. 4. It is the responsibility of all members of the health care team caring for residents in longterm care settings to understand any previously expressed wishes of the patient (through review of advance directives and with surrogate caregivers) regarding tube feeding and incorporate these wishes into the care plan. 5. Institutions such as hospitals, nursing homes and other care settings should promote choice, endorse shared and informed decision‐making, and honor patient preferences regarding tube feeding. They should not impose obligations or exert pressure on patients or providers to institute tube feeding

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