Prognostication: balancing certainty, science and experience
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1 Prognostication: balancing certainty, science and experience Christian T Sinclair, MD, FAAHPM University of Kansas Medical Center Spring 2017 csinclair@kumc.edu
2 Objectives Identify three barriers to effective prognostication Practice effective prognosis communication with peers, patients & families Examine how to improve prognostication
3 Outline Formulating a prognosis The research Is now the right time to tell? Identifying implicit and explicit requests Techniques for sharing prognostic information Phew! Glad that is done! Improving your communication
4 What is a Prognosis? An estimation of possible future outcomes of a treatment or a disease process founded upon a combination of experience, statistics and validated models
5
6 Two Parts to Prognostication Formulation (Foreseeing) Clinician estimates vs models Rarely done explicitly Rarely documented Not just predicting death Communication (Foretelling) Permission first Empathetic
7 What Can be Predicted? Time to discharge Case management/utilization Review Hospital throughput Functional outcome after therapy Surgical outcomes Risk of medical outcome Stroke, heart attack, cancer 30-day re-hospitalization
8 And Death
9
10 Predicting Risk of Death Medicare Hospice Benefit Withdrawal or withholding of life-sustaining treatments Activating a living will Choosing to go home Distant relatives Talking about important issues Providing care
11 The Research Problem Minimal research funding Minimal publications Mostly looking at genetic risk factors No revenue to be made (?) Mystery of prognosis
12 Prognosis Therapy Diagnosis PubMed MESH Search with Limits: English, Human, Core Clinical Journals (Jan 2008)
13 Who Can We Learn From? Weather forecasting Predictive analytics Clinical decision support systems CRM/advertising Fraud detection Underwriting Sports statistics - Moneyball
14 Element of Uncertainty Primary Disease Comorbidities Psychologic factors Functional Status Estimated Individualized Prognosis Social Determinants Signs & Symptoms Medications & Interventions Trajectory of Illness Goals of Care
15 SUPPORT Study Doctors provided formulated prognoses 59% of physicians acknowledged receiving 15% of physicians reported discussing w/ patients/families SUPPORT JAMA 1995
16 Comparison of SUPPORT and MD survival estimates Knaus, Annals IM, 1995
17 Christakis, Arch Int Med, 1998
18 Christakis, Arch Int Med, 1998
19 Christakis, Arch Int Med, 1998
20 Discordance 236 patients and 38 community oncologists Compared 2-year survival estimates 161 (68% discordant) More common among non-white (95% vs 65%) 144 (89%) of discordant patients did not know they were discordant 155 (96%) were more optimistic Gramling et al, JAM Onc, 2016
21 White et al, JAMA 2016
22 Enzinger, JCO, 2015
23 Not Just in Cancer 90% of people on HD didn t recall prognostic discussion Annual mortality 22% 89% of people with HF didn t recall discussion 82% of patients and 45% of caregivers in HF population figured out independently, death was imminent Davison, CJASN, 2010; Strachan 2009; McCarthy 1997
24 Pediatric Considerations Prognostic discussions more likely with PC 97% vs 83% Prognostic discussions earlier with PC Median 8 days vs 2 days Context is important, many patients want some information Parents consider both difficult & necessary Ullrich 2016; Brand 2017; Nyborn 2016
25 Nurse Perceived Barriers Logistics Discomfort with discussion Perceived lack of skill or training Fear of conflict Aslakson et al, JPM 2012
26 Lakin et al JAMA Int Med, 2016
27 Bruggeman et al., JPM 2015
28 Heyland et al, Open Med 2009
29 Techniques Review case information Clarify the question Affirm the question Raise the question Elicit patient knowledge/emotions Seek permission
30 Techniques Find humility Use ranges, not numbers Pause (yes, even longer than that) Manage expectations Address emotions Find the difficult words
31 Follow Up Phew! Glad that is done! Readdress goals of care Affirm openness Ensure follow-up Demonstrate commitment to care
32 Get Feedback Before you start a family meeting Ask colleagues for feedback During discussion Observe and note things that work well (or didn t) Assess emotions in the room After the meeting Elicit feedback Give feedback
33 Fox, JAMA, 1999
34 Fox, JAMA, 1999
35 Curate Trusted Tools See Appendix slide deck Pallimed prognosis links GeriPal eprognosis (Site and App) Pubmed search and alerts SEER database (cancer)
36 Study Your Own Efforts Prognosis: Disc. w / Pt Fam Min: Min. Hrs Dys Wks Mos. Avg: Min. Hrs Dys Wks Mos. Max: Min. Hrs Dys Wks Mos.
37
38 Summary Formulate first! Listen for implicit cues to discuss prognosis Define the context Seek permission Re-address as information changes Document, document, document Ask for feedback, give others feedback
39 References 1. Sinclair CT. Communicating a prognosis in advanced cancer. J Support Oncol. 2006;4(4): Accessed November 17, Christakis NA, Iwashyna TJ, NA C, et al. Attitude and Self-reported Practice Regarding Prognostication in a National Sample of Internists. Arch Intern Med. 1998;158(21):2389. doi: /archinte Chiarchiaro J, Buddadhumaruk P, Arnold R, White D. Quality of Communication in the ICU and Surrogate s Understanding of Prognosis. Crit Care Med. 2015;43(3): doi: /ccm quality. 4. Connors AF, Dawson N V., Desbiens NA, et al. A Controlled Trial to Improve Care for Seriously III Hospitalized Patients. JAMA. 1995;274(20):1591. doi: /jama
40 References 5. Lakin JR, Block SD, Billings JA, et al. Improving Communication About Serious Illness in Primary Care. JAMA Intern Med. 2016;176(9):1380. doi: /jamainternmed Enzinger AC, Zhang B, Schrag D, Prigerson HG. Outcomes of Prognostic Disclosure: Associations With Prognostic Understanding, Distress, and Relationship With Physician Among Patients With Advanced Cancer. J Clin Oncol. 2015;33(32): doi: /jco Gramling R, Fiscella K, Xing G, et al. Determinants of Patient- Oncologist Prognostic Discordance in Advanced Cancer. JAMA Oncol. 2016;174(12): doi: /jamaoncol
41 References 8. Bruggeman Andrew R, Heavey Sean F, Ma Joseph D, Revta C, Roeland Eric J. Lack of Documentation of Evidence-Based Prognostication in Cancer Patients by Inpatient Palliative Care Consultants. J Palliat Med. 2015;18(4): doi: /jpm Davison SN. End-of-life care preferences and needs: perceptions of patients with chronic kidney disease. Clin J Am Soc Nephrol. 2010;5(2): doi: /cjn McCarthy M, Hall JA, Ley M. Communication and choice in dying from heart disease. J R Soc Med. 1997;90(3): Accessed January 25, Strachan PH, Ross H, Rocker GM, Dodek PM, Heyland DK. Mind the gap: Opportunities for improving end-of-life care for patients with advanced heart failure. Can J Cardiol. 2009;25(11): doi: /s x(09)
42 References 12. Aslakson RA, Wyskiel R, Thornton I, et al. Nurse-perceived barriers to effective communication regarding prognosis and optimal end-of-life care for surgical ICU patients: a qualitative exploration. J Palliat Med. 2012;15(8): doi: /jpm Heyland DK, Allan DE, Rocker G, Dodek P, Pichora D, Gafni A. Discussing prognosis with patients and their families near the end of life: Impact on satisfaction with end-of-life care. Open Med. 2009;3(2): Accessed January 25, Meert KL, Eggly S, Pollack M, et al. Parents perspectives on physician-parent communication near the time of a child s death in the pediatric intensive care unit. Pediatr Crit Care Med. 2008;9(1):2-7. doi: /01.pcc
43 References 15. Nyborn JA, Olcese M, Nickerson T, Mack JW. Don t Try to Cover the Sky with Your Hands : Parents Experiences with Prognosis Communication About Their Children with Advanced Cancer. J Palliat Med. 2016;19(6): doi: /jpm Ullrich CK, Lehmann L, London WB, et al. End-of-Life Care Patterns Associated with Pediatric Palliative Care among Children Who Underwent Hematopoietic Stem Cell Transplant. Biol Blood Marrow Transplant. 2016;22(6): doi: /j.bbmt Gomersall SR, Ng N, Burton NW, Pavey TG, Gilson ND, Brown WJ. Estimating Physical Activity and Sedentary Behavior in a Free-Living Context: A Pragmatic Comparison of Consumer-Based Activity Trackers and ActiGraph Accelerometry. 2016;18(9):e239. doi: /jmir Brand SR, Fasciano K, Mack JW. Communication preferences of pediatric cancer patients: talking about prognosis and their future life. Support Care Cancer. 2017;25(3): doi: /s x.
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