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The Samuel Harvey Lecture 2009 International Cancer Education Conference “The Art and Science of Cancer Education and Evaluation” October 15, 2009 Houston,

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Presentation on theme: "The Samuel Harvey Lecture 2009 International Cancer Education Conference “The Art and Science of Cancer Education and Evaluation” October 15, 2009 Houston,"— Presentation transcript:

1 The Samuel Harvey Lecture 2009 International Cancer Education Conference “The Art and Science of Cancer Education and Evaluation” October 15, 2009 Houston, Texas

2 Talking to Doctors about Death Can we convince our colleagues that earlier (and better) conversations can lead to improved outcomes? Kenneth Pituch, MD Department of Pediatrics CS Mott Children’s Hospital University of Michigan, Ann Arbor

3 Disclosures Nothing to disclose

4 Objectives Recognize that earlier conversations about death will improve outcomes. Learn some best practices regarding conversations about preparation for death. Learn a strategy for helping promote better conversations.

5 Cases The cases I am presenting are modified to protect the identities of the patients and their families. The photos come from the public domain and are not the photos of my patients and their families.

6 Case 1: Josh 24 year old, recently married, diagnosed with aplastic anemia in April, Underwent matched, unrelated bone marrow transplant in September, 2008 Hospital course: successful engraftment, early, severe GVHD with GI bleeding. Three stays in the ICU October - November Worse bleeding in December, back in ICU Endoscopy, interventional radiology not successful Two transfusions of red cells, platelets daily for 6 days Major symptoms: pain, confusion, agitation

7 Josh’s Medications MICAFUNGIN LORAZEPAM HYDRALAZINE ACETAMINOPHEN ONDANSETRON HYDROMORPHONE PCA DIPHENHYDRAMINE PROMETHAZINE HCL ALBUTEROL SULFATE HYDROCORTISONE OCTREOTIDE TPN ADULT / RANITIDINE INSULIN PEDIATRIC INFUSION METHYLPREDNISOLONE FILGRASTIM ALBUMIN 25% IV SOLUTION POLYVINYL ALCOHOL DROPS CYCLOSPORINE 2DROP VANCOMYCIN HCL PAMIDRONATE INFUSION ACYCLOVIR CEFEPIME SIROLIMUS PENTAMIDINE URSODIOL MYCOPHENOLATE ETANERCEPT PANTOPRAZOLE SODIUM

8 Josh’s Medications MICAFUNGIN LORAZEPAM HYDRALAZINE ACETAMINOPHEN ONDANSETRON HYDROMORPHONE PCA DIPHENHYDRAMINE PROMETHAZINE HCL ALBUTEROL SULFATE HYDROCORTISONE OCTREOTIDE TPN ADULT / RANITIDINE INSULIN PEDIATRIC INFUSION METHYLPREDNISOLONE FILGRASTIM ALBUMIN 25% IV SOLUTION POLYVINYL ALCOHOL DROPS CYCLOSPORINE 2DROP VANCOMYCIN HCL PAMIDRONATE INFUSION ACYCLOVIR CEFEPIME SIROLIMUS PENTAMIDINE URSODIOL MYCOPHENOLATE ETANERCEPT PANTOPRAZOLE SODIUM

9 Palliative Care Consult, Dec 20 Josh is confused and cannot speak Josh’s young wife is tearful and withdrawn Josh’s dad is stoic and supportive

10 Palliative Care Consult, Dec 20 Conversation with Josh’s wife and parents: “What is your understanding of Josh’s condition?” “Josh is in tough shape” “He might not make it through” “What do his doctors tell you his chances are of pulling through?” “Not good. Probably about 50-50”

11 Palliative Care Consult, Dec 20 Conversation with Josh’s wife and parents: “What is your understanding of Josh’s condition?” “Josh is in tough shape” “He might not make it through” “What do his doctors tell you his chances are of pulling through?” “Not good. Probably about 50-50” Conversation with Josh’s doctor: “What are Josh’s chances?” “We’ve never had someone with this severe GVHD who has survived”

12 Palliative Care Consult, Dec 20 Conversation with Josh’s wife and parents: “What is your understanding of Josh’s condition?” “Josh is in tough shape” “He might not make it through” “What do his doctors tell you his chances are of pulling through?” “Not good. Probably about 50-50” Conversation with Josh’s doctor: “What are Josh’s chances?” “We’ve never had someone with this severe GVHD who has survived” Conversation with Josh’s nurse: “What did you hear the doctor tell the parents this morning? “She said: ‘Things are looking pretty rough….you know he might not pull through…. We are asking the surgeons to take another look.’”

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14 Case 2: Rocky 5 year old boy, hypoplastic left heart Worsening heart failure at age 4, put on transplant list. 21 days on ECMO (heart lung bypass) pre-transplant Transplant successful, but kidneys failed Continuous dialysis for 3 months Continuous ventilator support for 4 months, trache for last 2 months Bacterial and fungal sepsis At urging of ICU nurse palliative care consultation requested because “parents are struggling”

15 Case 2: Rocky continued After introductions, “How is Rocky doing today?” Dad: “He’s a little better: his creatinine went from 2.3 to 2.1 and his t-max was only 38.1” Review of chart, interviews with bedside nurses: No recall nor record of conversations about his chance of making it home/

16 Case 3: Andrew 18 year old with recurrent, metastatic Ewings sarcoma original treatment 3 years ago: chemo, surgery, radiation, BMT Recurrence 6 months after BMT, no longer responsive to treatment. Metastases in bladder, liver, lungs Severe edema in his legs Enrolled in a phase 1 drug study Admitted to hospital with hematuria, pallor Mother requests, “Don’t talk to him about dying. He’s a fighter.” Note from last clinic visit: “poor prognosis, likely survival less than 2 months, mother not ready for hospice conversation, will follow up at next visit in 2 weeks.”

17 Outcomes Josh: died 6 days later, never had the opportunity to talk about his life nor his wishes Rocky: died 3 weeks later of surgical complications. Parents stressed and non- communicative Andrew: still alive, palliative team working with him, his family and his care team.

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19 Why aren’t there better conversations?

20 Technologic Achievements in Pediatric Care G-tube Tracheostomy Broviac VP shunt

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24 CS Mott Children’s Hospital Attending Physician Rotation Schedule Nephrology service 1 to 2 weeks Pulmonary service 1 to 2 weeks Oncology service 1 to 2 weeks Critical Care service 1 week Bone Marrow Transplant 1 to 2 weeks General pediatric service 4 weeks Neonatal ICU 4 weeks

25 Specialist consultations JoshRockyAndrew 4 months3 months1 week ID (22), Pulm(8), GI (14), Nephrology (12), Cardiology (3), Surgery (6), IR(5), Pain (15) Psychology (3) Nephrology (64) ID (35) GI (2) Surgery (4) ENT (6) Urology (2) Pain (5)

26 Why aren’t there better conversations? Lack of training in residents and fellowship The ‘tyranny of autonomy’ Shared responsibility Always another medical/surgical option What’s easier, a one hour conversation, or a 2 minute phone call?

27 Understanding of Prognosis Among Parents of Children Who Died of Cancer Joanne Wolfe et al, Dana Farber Cancer Institute Vol 284, No. 19, Nov 2000 Questions: 1. How does timing of parental understanding of prognosis compare to timing of physician documentation of no realistic chance for cure? 2. Does earlier recognition correlate with different treatment approaches?

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32 Understanding of Prognosis Among Parents of Children Who Died of Cancer Joanne Wolfe et al, Dana Farber Cancer Institute Vol 284, No. 19, Nov 2000 Conclusions: There is often considerable delay in parental recognition of no realistic chance of cure.

33 Understanding of Prognosis Among Parents of Children Who Died of Cancer Joanne Wolfe et al, Dana Farber Cancer Institute Vol 284, No. 19, Nov 2000 Conclusions: There is often considerable delay in parental recognition of no realistic chance of cure. Earlier recognition leads to stronger emphasis on treatment to relieve suffering and to palliative care

34 Attitudes and Practices Among Pediatric Oncologists Regarding End-of-Life Care: a 1998 Survey Joanne Hilden, et al. Vol 19, No. 1 Jan pediatric oncologists, US, UK, Canada End of life training: no formal courses High reliance on trial and error Most had no access to palliative care team Most admitted communication difficulties especially in pain control / shift to end-of-life

35 Attitudes and Practices Among Pediatric Oncologists Regarding End-of-Life Care: a 1998 Survey Hilden, et al. Vol 19, No. 1 Jan 2001 FactorListed as a “Great Influence”(%) Factors influencing recommendation for shift from curative to palliative care

36 Attitudes and Practices Among Pediatric Oncologists Regarding End-of-Life Care: a 1998 Survey Hilden, et al. Vol 19, No. 1 Jan 2001 FactorListed as a “Great Influence”(%) Caregiving burden on the family 42 Factors influencing recommendation for shift from curative to palliative care

37 Attitudes and Practices Among Pediatric Oncologists Regarding End-of-Life Care: a 1998 Survey Hilden, et al. Vol 19, No. 1 Jan 2001 FactorListed as a “Great Influence”(%) Reluctance of parents to come to clinic Caregiving burden on the family Factors influencing recommendation for shift from curative to palliative care

38 Attitudes and Practices Among Pediatric Oncologists Regarding End-of-Life Care: a 1998 Survey Hilden, et al. Vol 19, No. 1 Jan 2001 FactorListed as a “Great Influence”(%) Absence of a phase 1 trial agent Reluctance of parents to come to clinic Caregiving burden on the family Factors influencing recommendation for shift from curative to palliative care

39 Attitudes and Practices Among Pediatric Oncologists Regarding End-of-Life Care: a 1998 Survey Hilden, et al. Vol 19, No. 1 Jan 2001 FactorListed as a “Great Influence”(%) Unrelenting pain or symptoms Absence of a phase 1 trial agent Reluctance of parents to come to clinic Caregiving burden on the family Factors influencing recommendation for shift from curative to palliative care

40 Attitudes and Practices Among Pediatric Oncologists Regarding End-of-Life Care: a 1998 Survey Hilden, et al. Vol 19, No. 1 Jan 2001 FactorListed as a “Great Influence”(%) Patient’s poor performance status Unrelenting pain or symptoms Absence of a phase 1 trial agent Reluctance of parents to come to clinic Caregiving burden on the family Factors influencing recommendation for shift from curative to palliative care

41 Attitudes and Practices Among Pediatric Oncologists Regarding End-of-Life Care: a 1998 Survey Hilden, et al. Vol 19, No. 1 Jan 2001 FactorListed as a “Great Influence”(%) Request by parent to stop therapy Patient’s poor performance status Unrelenting pain or symptoms Absence of a phase 1 trial agent Reluctance of parents to come to clinic Caregiving burden on the family Factors influencing recommendation for shift from curative to palliative care

42 Attitudes and Practices Among Pediatric Oncologists Regarding End-of-Life Care: a 1998 Survey Hilden, et al. Vol 19, No. 1 Jan 2001 FactorListed as a “Great Influence”(%) Absence of effective therapy Request by parent to stop therapy Patient’s poor performance status Unrelenting pain or symptoms Absence of a phase 1 trial agent Reluctance of parents to come to clinic Caregiving burden on the family Factors influencing recommendation for shift from curative to palliative care

43 Updated Model for Palliative Care

44 Plea number one: Palliative care can help; get them involved EARLY.

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46 The Brief Structured Observation Pituch K. Harris M. Bogdewic S. The brief structured observation--a tool for focused feedback. Academic Medicine. 74(5):599, 1999 May.

47 The Brief Structured Observation Student asks What brings you here today, Mr. Jones? So…you’ve been coughing for a week or so? Uh, huh….does anything make it worse? Are you taking any cough syrup or anything? Were your like around anyone who had a cough? Faculty writes down the questions, asks the student “What did you learn? What were you worried about?” Review of the ‘script’ leads students to improve their questions.

48 Why? So What? When have you had symptoms like this before? What respiratory illnesses have you had in your life? How bad is your cough?. What are you unable to do that you can usually do? Assumption 1: It helps to know what you want to find out

49 How many times in a row do you cough? Is it a dry cough or a wet cough? Your aren’t wheezing or anything, are you? Assumption 2: Better questions lead to better information

50 Scripting statements heard at bedside rounds: His LFT’s are a little higher today. Your baby is on the lights to prevent brain damage. We are going to have to do a work-up on her fever.

51 Student as reporters The “Code Conversation” I ask this to all the patients, even if they are just coming in for a minor infection: If his heart stops beating, do you want us to revive him?

52 Nurses as reporters Heard on rounds: Sara’s condition is not good. Her creatinine is rising. We have to begin dialysis today.

53 More statements, heard by nurses. (All with parents of patients with advanced disease, families discussing limits to resuscitation.)

54 More statements, heard by nurses. (All with parents of patients with advanced disease, families discussing limits to resuscitation.) Sean now has a positive urine culture so we are starting antibiotics.

55 More statements, heard by nurses. (All with parents of patients with advanced disease, families discussing limits to resuscitation.) Sean now has a positive urine culture so we are starting antibiotics. Megan is still showing signs of severe reflux. The surgeons can put in a g-tube tomorrow and the nurses will show you how to use it.

56 More statements, heard by nurses. (All with parents of patients with advanced disease, families discussing limits to resuscitation.) Sean now has a positive urine culture so we are starting antibiotics. Megan is still showing signs of severe reflux. The surgeons can put in a g-tube tomorrow and the nurses will show you how to use it. Amber isn’t able to tolerate bolus feeds, so we changed her to continuous tube feedings.

57 Team & Family Meetings I know things have not been going well. We are running out of things that are likely to help. I worry that anything else we do to her will just cause more pain without benefit….

58 Team & Family Meetings I know things have not been going well. We are running out of things that are likely to help. I worry that anything else we do to her will just cause more pain without benefit. So I need to ask you…. What do you want us to do if her heart stops?

59 Team & Family Meetings These are really tough decisions. The cancer is no longer responding to therapy and the ventilator settings keep needing to be increased. Last night we had to start medicine to support her blood pressure. We are ready to recommend that we change our focus from just keeping him alive, to keeping him comfortable. Our palliative care team can help us make sure that happens. We think that taking him off the ventilator would be reasonable.

60 Team & Family Meetings These are really tough decisions. The cancer is no longer responding to therapy and the ventilator settings keep needing to be increased. Last night we had to start medicine to support her blood pressure. We are ready to recommend that we change our focus from just keeping him alive, to keeping him comfortable. Our palliative care team can help us make sure that happens. We think that taking him off the ventilator would be reasonable. That is, if it’s all right with you.

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62 What discouraging words are seldom heard?

63 Death Die Dying

64 Good questions heard What are you worried about? How often have you worried that she (you) might die from this? Who else in your family is worried about death? What is important to your child (you)? Who close to you have you lost? What was helpful? What could have been better? Where is the best place to be when she dies? (you die)?

65 The challenges to calling palliative care “The parents/family aren’t ready.” “Jason is a fighter, he’s not ready to give up!” “You guys HAVE to change your name!”

66 Statements heard We are hoping for the best, but we want to be ready in case we don’t get the response we want. We have a team that can help us make sure that as we fight for his (your) survival, we don’t stop looking at quality of life. His (your) tumor has returned and is no longer responding to even the most aggressive therapy. When we get to this point, we know that death will follow…we don’t know how soon….likely within weeks to months. Our goal now is to make life as comfortable as possible: treating pain, getting the most out of what time is left.

67 Future hope Multi-disciplinary Palliative care programs now exist in > 80% of Children’s Hospitals. Training of fellows and residents in palliative care is burgeoning. More children are dying at home than in hospitals.

68 Vol 196, No. 1 Jan Clinical Research for Surgeons in Palliative Care: Challenges and Opportunities Alexandra Easson et al Toronto Decision Making in Pediatric Onclology: Who Should Take the Lead? Simon Whitney et al Baylor Vol 24, No. 1, Jan 2006 A Process to Facilitate Decision Making in Pediatric Stem Cell Trans- plantation: The Individualized Care Planning and Coordination Model Justin Baker et al St. Judes Research Hospital Vol

69 Whitney et al, Journal of Clinical Oncology Vol 24, No. 1, Jan 2006

70 Percentages of children dying at home, by disease grouping FEUDTNERFEUDTNER, SILVEIRA, CHRISTAKISSILVEIRACHRISTAKIS PEDIATRICS APR

71 Advice to Educators Find your allies in nursing, social work, child life, spiritual care, palliative care, trainees. Continue to ask “What did you say to them?” “What did you hear?” (Plea number 2) Provide feedback when appropriate / re- inforce good questions and statements. Target the young and the restless. Please!!! Share your ideas with your colleagues and WITH ME!!

72 “Death is not the ultimate tragedy of life. The ultimate tragedy is depersonalization – dying in an alien and sterile environment, separated from the spiritual nourishment that comes from being able to reach out to a loving hand, separated from a desire to experience the things that make life worth living, separated from hope” Cousins, 1979

73 Thanks to Cecilia Trudeau, RN Maureen Giacomazza, RN Kirsten Davis, MSW


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