1. 1. Care of Patients Facing the End of Life and Their Families M. Elizabeth Paulk, M.D., F.A.C.P. July 13, 2015
2. 2. M. Elizabeth Paulk, M.D. has no relationships with any entity producing, marketing, re-selling, or distributing health care goods or services consumed by, or used on or near, patients. Disclosure of Financial Relationships
3. 3. Welcome! Dont worry it is all going to be ok. Do it right you get the credit. Do it wrong its the residents fault. Believe it or not it will be fun
4. 4. The English view death as imminent, Canadians view death as inevitable, Americans view death as optional. - unknown
5. 5. Anticancer Treatment Cancer pain relief and palliative care Anticancer Treatment Traditional Allocation of Resources Proposed Model of Resource Allocation Cancer pain relief and palliative care
6. 6. Palliative Care Making life as easy as possible for patients and families living with serious illness Our team: MD, Social Worker, Nurse, Chaplain, MA, and Clerk What we do: Consults, Clinics When to call us: life expectancy < 1 year How to call us: Janice 2-5805, or page through directory
7. 7. Inpatient Consults Pain and Symptom Management Social Work Disasters Discussion of Goals of Care: Artificial nutrition/hydration DNR status Breaking bad news Clinic follow-up PLEASE have a question in mind when you call. Please if patient has been seen, call the provider who wrote the note!
8. 8. Clinic Visits Pain and Symptom management Discussion of Goals of Care Provide a home, close follow-up for patients and their families
9. 9. Reality of the Evidence in Palliative Medicine What does the evidence support? Very little evidence available Patients are ill Drugs are mostly generics What do clinicians actually do in practice? Almost entirely empiric Things that are cheap
10. 10. End of Life in the ICU 10-20% of all ICU patients die Often illnesses are unanticipated little previous discussion of illness with family Prognostication variable Culture of aggressive treatment Patients not generally able to participate May seem dehumanized by circumstances
11. 11. 2004 Lippincott Williams & Wilkins, Inc. Published by Lippincott Williams & Wilkins, Inc. 2 Symptom Burden in the Chronically Critically Ill The symptom burden of chronic critical illness *. Nelson, Judith; MD, JD; Meier, Diane; Litke, Ann; Natale, Dana; Siegel, Robert; Morrison, R Critical Care Medicine. 32(7):1527-1534, July 2004. Percent of patients reporting at least one symptom episode rated as moderate or severe (n = 36).
12. 12. Simple Strategies for Symptom Management in ICU Good oral care helps mitigate thirst Hunger relieved by feeding Actively elicit symptoms and treat Dypsnea Pain Depression Anxiety To the extent it is safe and feasible, minimize sleep disruption and liberalize visitation Optimize communication
13. 13. Five Most Common Symptoms Pain Nausea/vomiting Breathlessness Weight loss Weakness / fatigue Brunnhuber, K., Nash, S., Meier, D.E., et al (2008). Putting evidence into practice: Palliative care (BMJ Group). Retrieved from Clinical Evidence website: http://clinicalevidence.bmj.com/downloads/end-of-life.pdf
14. 14. Pain is a more terrible lord of mankind than even death itself. Albert Schweitzer
15. 15. Basics of Pain Management Use a pain scale WHO pain ladder Use standing doses, not prn Always have a breakthrough pain plan 10% of daily opioid dose q 1-2 h Reassess dosage needs daily
16. 16. Assessment of Pain PQRST P = Provoking/Palliating factors Q = Quality in patients own words R = Radiates S = Severity T = Time Interference with activities, degree to which patient is bothered Goals for management Recommended instruments: McGill Pain Questionnaire (MPQ) and its short form (SF-MPQ) Edmonton Symptom Assessment System (ESAS), and Memorial Symptom Assessment Scale (MSAS) For patients with dementia: Many dementia patients can use established scales Observational pain scale underestimates patients estimate of pain Brunnhuber, K., Nash, S., Meier, D.E., et al (2008)
17. 17. Pain assessment scales. Abrahm J L , Ann Intern Med 1999;131:37-46 1999 by American College of Physicians
18. 18. WHO 3-step Ladder 1 mild (1-3) 2 moderate (4-6) 3 severe (7-10) Morphine Hydromorphone Methadone Levorphanol Fentanyl Oxycodone Adjuvants A/Codeine A/Hydrocodone A/Oxycodone A/Dihydrocodeine Tramadol Adjuvants ASA Acetaminophen NSAIDs Adjuvants
19. 19. Practical Issues in Pain Management KISS WHO Step one : Use your favorite NSAID &/or APAP Be vigilant for contraindications Protect the stomach WHO Step two: Pick the combination agent of your choice Watch APAP doses WHO Step three: Hydrocodone:morphine is 1:1 Dose your pure opioid agents like insulin: long acting basal agent (e.g., MSContin) short acting rescue as needed (MSIR or morphine elixir) For patients who need a change in route of administration, remember that conversion of oral MSO4 to IV 3:1 PREVENT CONSTIPATION!
20. 20. The Pain Curve Time OpioidLevel Pain Threshhold Pain Threshhold
21. 21. Texas Triplicate Requirement All schedule 2 prescriptions have to be written on a special form called a Triplicate. It is not actually a triplicate form just one piece of blue paper. YOUR ATTENDING MUST WRITE THIS so make sure it gets done during rounds. You can write for one month, no refills.
22. 22. Practical Concerns about Opioids Risk of addiction low when used properly* Respiratory depression unlikely at recommended doses New drugs no better than morphine Regulatory issues Thoroughly review and document pmhx, sochx, functional status, response to medications For check list of best practices: http://hrsa.dshs.wa.gov/Pharmacy/Best_Practi ces_Summary_Checklist.pdf Brunnhuber, K., Nash, S., Meier, D.E., et al (2008)
23. 23. Biblical Tenet of Palliative Care The hand that doth hold the pen that scribes the opioid, yea let that hand also prescribe the laxative.
24. 24. Myths and Misconceptions: Hospice No inpatient hospices in Dallas DNR NOT required for home hospice Full-time caregiver in the home NOT REQUIRED Cannot be arranged on the day of discharge LONG waiting list for non-funded patients (01, 20) - 2 to 3 weeks Meds, DME not provided for non-funded patients
25. 25. Neuropathic Pain Tricyclic Antidepressants (1 in 3 pts respond) Desipramine, other TCAs, venlafaxine Use limited by CV adverse effects Gabapentin/Pregabalin (1 in 4 patients respond) usual effective dose 9001800 mg / d; max may be > 3600 mg / d minimal adverse effects drowsiness, tolerance develops within days Systemic administration of local anesthetics Lidocaine or mexiletine effective in 30 RCTs Combination may be the most effective Brunnhuber, K., Nash, S., Meier, D.E., et al (2008)
26. 26. Bone pain Metastasis to bone 70% of pt with prostate, breast CA 30% of pt with thyroid, lung, bladder CA Multidisciplinary approach, including: Analgesics: opioids, NSAIDs Disease modifying therapy (chemotherapy, hormone therapy) Corticosteroids Bisphosphonates Radiopharmaceuticals (strontium, samarium) External beam radiation Orthopedic intervention External bracing Brunnhuber, K., Nash, S., Meier, D.E., et al (2008)
27. 27. Depression Loss of social position, job, prestige, income Loss of role in family Insomnia, chronic fatigue Sense of helplessness Disfigurement Anger Bureaucratic bungling Delays in diagnosis unavailable physicians uncommunicative physicians Failure of therapy Friends who do not visit Total Pain Anxiety Fear of hospital or nursing home Fear of pain Worry about family and finances Fear of death Spiritual unrest, uncertainty about future Physical pain Other symptoms Adverse effects of treatment O'Neill, B., Fallon, M. BMJ 1997, 315p. 801-804
28. 28. Nausea/Vomiting Patients with cancer 13-17% of terminally ill cancer patients in the last 1-2 weeks of life 6-68% of all patients with cancer Patients with other illnesses: AIDS: 43% to 49% of patients Heart disease: 17% to 48% of patients Renal disease: 30% to 43% of patients Assessment: simple visual analogue scales or numerical rating scales Brunnhuber, K., Nash, S., Meier, D.E., et al (2008)
29. 29. Management of Nausea/VomitingCause Receptors Involved Drug Classes Drug Examples V Vestibular Cholinergic Histaminic Anticholinergic Antihistaminic Scopolamine Promethazine Diphen- hydramine O Obstructive Cholinergic Histaminic 5HT3 Drugs stimulating the myenteric plexus Senna products M- Motile (dysmotility of upper gut) Cholinergic Histaminic 5HT3 Prokinetics (stimulating 5HT4 receptors) Prokinetics, metoclo- pramide I infectious/inflam- matory Cholinergic Histaminic 5HT3 Neurokinin 1 Anticholinergic Antihistaminic 5HT3 antagonists Neurokinin 1 ant. Anti-inflammatory Scopolamine Promethazine Diphenhydramine Odansetron Apprepitant Corticosteroids Brunnhuber, K., Nash, S., Meier, D.E., et al (2008)See handout for doses, cost Treat anxiety if present
30. 30. Practical Issues in Management of Nausea/Vomiting Many neurotransmitters involved Use dirty drugs Let side effects work for you Strategy analogous to HTN management Stack up drugs Once symptoms controlled can start to wean
31. 31. Empiric Recommendations for Constipation Management Prophylaxis for all patients on opioids with senna/colace 2 PO BID If inadequate, use PEG OTC 8 oz in AM, and then q 6h until BM Manually disimpact if necessary Consider subcutaneous methylnaltrexone if refractory
32. 32. Dyspnea Prevalence 17-30% of patients living with cancer 90-95% of end-stage COPD patients 60-88% of end-stage heart disease patients Increasingly common as the end of life approaches Best assessment is patient report
33. 33. Dyspnea Recent ACP guidelines show evidence supports treatment with: Oxygen for hypoxemia Strong evidence for COPD & exercise Opioids Theoretical effect of respiratory depression not supported by the literature Beta-agonists for dyspnea from COPD Qaseem, A, Snow, V., Shekelle, P, et al. Ann Intern Med. 2008;148:141-146
34. 34. Practical Aspects in the Management of Dyspnea Mild dyspnea Select a weak opioid and offer q2h prn dyspnea Watch your APAP doses Start lower in elderly Severe dyspnea Opioid nave morphine IR (5-15mg) or hydromorphone (0.5 2mg) q 2-4h prn On scheduled opioids already 10% of total daily dose given q1h prn
35. 35. Practical Aspects of Managing Dyspnea EPEC Project, American Medical Association, 1999 Pursed lip breathing , smoke
36. 36. Practical Aspects of Managing Dyspnea Anxiolytics to decrease the anxiety associated with dyspnea: *there is not strong evidence to support this practice, but this is commonly done in hospice patients and is empirically effective. EPEC Project, American Medical Association, 1999
37. 37. Fatigue Approximately 40% of cancer patients experience fatigue at the time of diagnosis Worse during or after chemotherapy Higher than 75% in patients with advanced cancer Common with COPD, heart failure Multifactorial Best evaluated by self-assessment measures No gold standard measurement Brunnhuber, K., Nash, S., Meier, D.E., et al (2008)
38. 38. Management of Fatigue Evidence supports use of: Psychological, psychoeducational interventions (small) Methylphenidate small, significant improvement Exercise - small improvement Energy conservation, activity management - small but significant effect No effect: progestational steroids, paroxetine, or multivitamins. Insufficient data to recommend any specific complementary therapies Brunnhuber, K., Nash, S., Meier, D.E., et al (2008)
39. 39. Practical aspects in the management of fatigue / weakness . . . Promote energy conservation Evaluate medications Optimize fluid, electrolyte intake Permission to rest Clarify role of underlying illness Educate, support patient, family Include other disciplines
40. 40. Practical aspects in the management of fatigue / weakness Dexamethasone 4mg PO once daily feeling of well-being, increased energy effect may wane after 4-6 weeks continue until death Methylphenidate 5mg PO q 8AM and q noon May increase up to 20mg daily Do not give after 2pm to avoid interfering with sleep
41. 41. Anorexia/Cachexia Prevalence: 70% of patients with advanced cancer Best assessment is patient report Treatments: Megesteral acetate, medroxyprogesterone Corticosteroids Orally consumed supplements Parenteral nutrition Brunnhuber, K., Nash, S., Meier, D.E., et al (2008)
42. 42. Empiric Observations about Anorexia/Cachexia Family education is key Tailor diet to patient preferences Fresh fruit Melon, peaches, grapes Things that are cold and sweet Ice cream, popsicles, jello Lemon drops, zinc lozenges for bad taste in mouth Most patients do not want dairy, fried foods Manage grief, disappointment about change in diet Encourage socializing at meal times even if patient does not want to eat
43. 43. Depression Recent ACP Guidelines: Physicians should screen for and treat depression in patients facing end-of-life Evidence supports use of TCAs and SSRIs Psychosocial interventions also effective Some providers will use methylphenidate in patients with very short life expectancy Qaseem, A, Snow, V., Shekelle, P, et al. Ann Intern Med. 2008;148:141-146
44. 44. Mental Health About 50% of advanced cancer patients meet criteria for a psychiatric disorder adjustment disorders (11% to 35%) major depression (5% to 26%) less evidence for patients with cardiac, pulmonary, renal, or neurologic disease. Sources of anxiety: symptom management isolation family needs Brunnhuber, K., Nash, S., Meier, D.E., et al (2008)
45. 45. Assessment of Depression No recommended instrument Cannot use vegetative sx as a marker Low mood, low interest best markers, with sensitivity of 91% and specificity of 86% Must be actively solicit sx, because pts may: view psychological distress as being appropriate consider that distress reflects a lack of coping skills, or believe that it is not appropriate to report such issues to their clinician. Depression may be perceived somatically as fatigue or chronic pain Brunnhuber, K., Nash, S., Meier, D.E., et al (2008)
46. 46. Delirium Prevalence: 20% to 30% of people with cancer, COPD and end-stage liver disease in SUPPORT 26% to 44% in terminal cancer 83% in people during their final days. Assessment: Confusion Assessment Method (CAM) Memorial Delirium Assessment Scale (MDAS) Treatment in the terminally ill is difficult Prevention is key Brunnhuber, K., Nash, S., Meier, D.E., et al (2008)
47. 47. Delirium: Treatment Drugs are the most common cause of delirium reduction and possibly withdrawal of anticholinergic and psychoactive drugs opioid dose reduction and/or rotation (usually at an equianalgesic dose with a reduction of 20% to 30%) Newer antipsychotics no better than haloperidol Brunnhuber, K., Nash, S., Meier, D.E., et al (2008)
48. 48. What Do Patients with Serious Illnesses 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.
49. 49. Advance Care Planning Recent ACP Guidelines: Clinicians should ensure that advance care planning, including completion of advance directives, occurs for all patients with serious illness (strong recommendation, low quality of evidence) Qaseem, A, Snow, V., Shekelle, P, et al. Ann Intern Med. 2008;148:141-146
50. 50. My Philosophy on ACP (the other ACP) Goal is understanding/documenting patient goals of care Care Planning is: A team effort An ongoing conversation Best initiated as an outpatient Requires time, communication, documentation Patient/family must understand Diagnosis, prognosis Risks and Benefits of Available interventions Possible Outcomes
51. 51. Conveying Prognosis Most want accurate and detailed prognostic information BUT SUPPORT study around 1 in 5 would rather not discuss end-of-life options. Most prefer physician to raise the subject Many preferred physician to ask first if they wished to know their prognosis in what detail In some other cultures (e.g., Asian, Navajo, African, Central and South American and Eastern European cultures), nondisclosure of bad news or use of nonverbal means is expected. Assumptions based on ethnic background can be misleading better to ask. Brunnhuber, K., Nash, S., Meier, D.E., et al (2008)
52. 52. The Collusion of Hope Providers fear relaying honest prognosis for fear of destroying hope 98% wanted doctor to be realistic. Hope giving behaviors: offering the most up to date treatment (90%) appearing to know all there is to know about the patients cancer (87%) saying that the pain will be controlled (87%). Hope depleting behaviors: being nervous/uncomfortable (91%) giving prognosis to the family first (87%) using euphemisms (82%) Hagerty et al. JCO 2006; 23(6): 1278-1288
53. 53. Expectations regarding Treatment: CPR TV Shows = #1 Source of Info for older adults regarding CPR Older adults overestimate CPR success by 200% CPR Success on Television (NEJM): ER, Chicago Hope, Rescue 911 75% survived Immediate Arrest 67% appeared to survive to D/C 83% = Young Adults Outcomes = ALWAYS either Full Recovery or Death
54. 54. Survival After Inpatient Cardiac Arrest Bedell, et al. prospectively studied 294 patients resuscitated at Beth Israel Hospital 1981-1982 160 men, 134 women, age 18-101, mean 70 128 (44%) survived the arrest, and 41 (32% of survivors) lived until discharge renal failure (3% of 75 patients survived, none on hemodialysis) cancer (7% of 59 survived, none with metastases) pneumonia (0% of 58 survived) none of the 42 patients with sepsis and none of the 16 patients with CVA survived to discharge homebound before hospitalization (4% of 137 homebound survived) Age was not a significant predictors Slide couresty of Don Cox Hayley, DO and Don Scott, MD, MHS University of Chicago Part of the CHAMP curriculum, supported by the Donald W. Reynolds Foundation
55. 55. Mental Health, Treatment Preferences, and Advance Care Planning EOL discussions not associated with patients feeling depressed, sad, terrified, worried or meeting DSM criteria for mental disorder Patients participating in EOL discussions more likely (p