The Care of Patients with Life-Threatening Illness

1. The Care of Patients with Life-Threatening Illness Susan Merel, MD Assistant Professor, General Internal Medicine Hospital Medicine Program and Palliative Care Service 1/8/13

2. Approach to the seriously ill patient Communication Common issues Establishing goals of care Advanced Directives Code status Prognosis Grief Overview

3. Palliative Care • Focus on relieving suffering, improving quality of life for patients with advanced illness • Communication with patients and families • Establishing goals of care • Help with decision-making • Symptom management • Coordination of services Morrison RS, Meier DE NEJM 2004

4. Case #1 • 47 yo woman w/ severe alcoholic hepatitis • Multiple complications including renal failure, respiratory failure. • Required intubation and respiratory support, multiple procedures, now extubated. • Unable to get out of bed, getting tube feeds. • Hepatology estimates 6-month mortality at 75%

5. Case #1 • The patient has been asking to go home. • Her sister, who is her primary caregiver, wants to continue aggressive care. • What do you do?

6. Conducting a Family Meeting • Establish patient’s knowledge • Learn about the patient as a person • Determine hopes, fears/concerns • Work together to make a decision • Do not be afraid to make recommendations • Establish follow-up and continued support

7. Conducting a Family Meeting • Establish the patient’s understanding • What do you understand about your illness? • From your perspective, what is happening with your illness, what are the plans for treatment? • From your perspective, how is this illness affecting you and your family? • What are your hopes? • What else are you hoping for? • Knowing how sick you are, what are you hoping for for the rest of your time?

8. Conducting a Family Meeting • What are your fears or concerns? • What are you worried about? • Expanded social history • What makes life worth living to you? • What was life like before you got sick? • Spiritual history • Where do you get your strength?

9. Quill, T. E. JAMA 2000;284:2502-2507

10. How you communicate matters • Increased proportion of family speech associated with increased family satisfaction and decreased conflict with physicians • Intervention to improve communication in ICU • Guidelines for conferences including eliciting values, acknowledging emotions etc. • Intervention patients with fewer “nonbeneficial interventions” • Intervention families with less guilt, anxiety, depression, PTSD symptoms McDonagh JR et al, Crit Care Medicine 2004; Lautrette A et al, NEJM 2007;

11. Case #1 Palliative care consult completed Patient understands that she is dying. Patient and sister express strong wish that patient reunites with family and die at the sister’s house. Patient enrolled in home hospice. Lives about 2 weeks. Is able to interact with family, see estranged relatives. Dies comfortably with family present.

12. Hospice Care • Philosophy of care focusing on comfort at the end of life • Limited to a prognosis of < 6 months • Usually paid for by insurance • Can occur at home or in a facility • Home hospice patients need additional support

14. Case # 2 • 87 year old woman admitted with atrial fibrillation and heart failure • PMH: Stroke in the past, severe osteoarthritis • Social: Former smoker. Lives in assisted living. • Chest xray on admission is abnormal.

16. Case # 2 • You believe this mass is cancer. • The patient does not want invasive diagnostic procedures. • She wants to know how much longer she has to live.

17. Why discuss prognosis? • Patients want to know • Many interventions we offer are risky and/or burdensome • Accurate prognostic information may change patients’ decisions • 41% of older patients favored CPR before learning that probability of survival to discharge was 10-17%; after learning that, only 22% did • Required for hospice eligibility Murphy DJ et al, New Engl J Med 1994

18. Do physicians provide accurate prognoses near the end of life? • Study of physician’s estimated prognoses upon hospice referral • Only 20% were correct; 63% were over-optimistic • More experienced clinicians are more accurate • Closer Dr-Pt relationship  less accurate estimate • Estimates of nurses aides within one week of death more accurate than those of physician or nurse Christakis NA, Lamont EB, BMJ 2000; Oxenham et al. Journal of Palliative Medicine 1998

19. What factors are important in prognosis? • Disease-specific data • Age • Functional status

20. Prognosis in Cancer • Most important predictor is functional status • Patients who spend greater than >50% of time in bed or in a chair generally have a prognosis of less than 3 months • Standardized scales can be helpful • ECOG (Eastern Cooperative Oncology Group) • Karnofsky scale • Median survival of 3 months correlates with Karnofsky score <40 or ECOG >3. Weissman D “Determining Prognosis in Advanced Cancer” eperc.mcw.edu

21. ECOG • ECOG >3, median survival ~3mths

22. Prognosis by disease process Slide courtesy of Caroline Hurd with modifications

23. Other prognostic resources • Eprognosis.com • Older adults without one dominant serious illness • Seattle Heart Failure Model (CHF) • http://depts.washington.edu/shfm/ • MELD score for end-stage liver disease

24. Discussing Prognosis • Confirm that patient wants to know and that important people are there if desired • Give a range (e.g. weeks to months) and explain limitations • Discuss the relationship of function to prognosis • Allow silence and respond to emotion

25. Preserving Hope • Learn about patient’s hopes and fears • Allows reframing • Respond empathically • “Hope for the best, plan for the worst” • “Plan A and Plan B” • Focus on achievable goals • “We can definitely treat your pain . . .” • Hope changes over the course of illness Campbell TC et al, The Cancer Journal, 2010. Back A et al, Mastering Communication with Seriously Ill Patients. Cambridge Univ Press 2009

26. Case #2 • Your patient’s family is very concerned. • They would like her to reconsider diagnostic procedures and chemotherapy. • Her daughter asks: “Won’t she live longer if her cancer is treated aggressively?”

27. Life Prolonging New Hospice Care Care Bereavement Palliative Care Shifting how we care for patients Old Hospice Care Life Prolonging Care Death

28. Palliative care likely has a greater benefit if patients are referred early Randomized control trial of patients with advanced non-small cell lung cancer PC patients w/ better quality of life, p = 0.03 Fewer PC patients depressed, 16 vs 38%, p = 0.01 PC patients with longer median survival, 11.6 vs 8.9 months, p = 0.02. Early Palliative Care Temel JS et al, NEJM 2010

29. Case #3 • 80 year old retired professor with large stroke • History of two prior strokes • Treated aggressively with little improvement • PE: Somnolent, able to move R hand and foot and mumble a few words • Speech pathologist notes severe dysphagia and recommends artificial nutrition • What do you do now?

30. Two types: Durable power of attorney for health care “Living Will” “Five Wishes” document that includes both Limitations: Often not completed with physician input Cannot anticipate every medical situation Advanced Directives Aitkin PV, American Family Physician 1999; Tonelli MR Chest 1996

31. Benefits of Advanced Directives • Opportunity to educate patients about their prognosis and illness • Guides care reflecting patient's preferences • Patients have more control over care • Can relieve care giver/surrogate burdens and stress after a patient dies • Allows patients to have a voice at times when they cannot speak for themselves Slide courtesy of Caroline Hurd, MD; Wright JAMA 2008, Detering BMJ 2010

32. www.idph.state.il.us/public/books/Livin.PDF

33. Available through UWMC and Harborview Palliative Care services, and at fivewishes.org (for a fee)

37. POLST program • Goal is to improve communication of wishes for end-of-life care by using standardized form • Prospective cohort study: • Patients with POLST forms much more likely to have orders about life-sustaining treatments other than CPR, (98.0% vs 16.1%, P < 0.001). • Patients with POLST forms indicating that they did not want aggressive measures (including hospital transfer) had those wishes respected. Hickman SE et al JAGS 2010

39. POLST availability • Washington • Montana • Idaho (POST form; bracelet available) • Developing in Alaska (MOST form) • Multiple other states including California and New York (MOLST) POLST.org

41. The family now knows that the patient would not have wanted artificial nutrition, but is distressed and has a lot of questions: Won’t he be hungry? Won’t he die sooner? Should we reverse his decision? Case # 3

42. Artificial Nutrition and Hydration (ANH) at the End of Life • No evidence that ANH prolongs life for most diagnoses • May be helpful in strokes, head/neck cancer, ALS • ANH may increase secretions, ascites, edema • Tube feeding does not reduce risk of aspiration pneumonia • Actively dying patients not thought to experience hunger and thirst Hallenbeck J, EPERC fast fact #10, eperc.mcw.edu; Quill TE et al, Primer of Palliative Care 4th Edition

43. Case #3 • Family and providers discuss artificial nutrition and hydration in detail • Consider a trial of artificial nutrition, but POLST form provides good evidence of his wishes • Patient goes home with hospice and dies comfortably with family present

44. Case #4 • 59 year old woman w/ metastatic ovarian cancer admitted for altered mental status and abdominal pain • Has had multiple treatments over 4 years • Chemotherapy • Radiation therapy • Bowel surgery and renal stent • Currently on experimental treatment protocol

45. Case #4 • You interview and examine the patient and discuss her with your senior resident. • You write orders and make plans to evaluate her pain and delirium. • Your senior resident says, “You forgot to ask about her code status, let’s go back to the room and ask together.”

46. Case # 4 • What is “Code Status?” • What is the best way to ask this patient?

47. Cardiac Resuscitation • Became widely used in the 1960’s • “Orders not to resuscitate” (now called DNR) introduced in the mid-1970’s • Default is treatment • Other treatments offered at discretion of provider • Most patients do not die of cardiac arrest as the primary process

48. Courtesy of Daniel J Brauner MD

49. Fields ML. The C.P.R. team in a medium-sized hospital. • Amer J Nursing. 1966;66:87-90. Courtesy of Daniel J Brauner MD

50. “Orders Not to Resuscitate” “ . . .Cardiopulmonary resuscitation is not indicated in certain situations, such as in cases of terminal irreversible illness where death is not unexpected or where prolonged cardiac arrest dictates the futility of resuscitation efforts. Resuscitation in these circumstances may represent a positive violation of an individual’s right to die with dignity. When CPR is considered to be contraindicated for hospital patients, it is appropriate to indicate this in the patient’s progress notes . . “ Standards for Cardiopulmonary Resuscitation (CPR) and Emergency Cardiac Care, JAMA. 1974; 227:p864. Courtesy of Daniel J Brauner MD