How Long Do I Have? The Art and Science of Prognostication Jeanie Youngwerth, MD University of Colorado School of Medicine Associate Professor of Medicine, Hospitalist Associate Program Director, Colorado Palliative Medicine Fellowship Director, UCH Palliative Care Consult Service Jean.Youngwerth@ucdenver.edu I have no financial relationships to disclose
Objectives Review how prognostication impacts decision making Describe factors that increase prognostic accuracy Discuss different models of prognostication information sharing Patient #1 32 y/o F with metastatic sarcoma Dx 5 years ago Hospitalized for pain She asks what is her prognosis Don t sugar-coat it Going to Disneyland in 4 months with her kids
Prognostication Background Patients tend to want at least some info Individualized approach Physicians tend to avoid topic and causes great stress Steinhauser: JAMA 2000; Clayton: JPSM 2005; Hagerty: JCO 2005; Maltoni: JCO 2005; Parker: JPSM 2007; Panagopoulou: JCO 2008; Innes: Palliat Med 2009; Smith: Oncology 2010; Campbell: Cancer J 2010; Ahalt: JGIM 2011; Wachterman: JAMA IM 2013. Schoenborn: JAMA IM 2016. Why We Discuss Informed decision making Patients: treatment and lifestyle options Providers: treatment options; resources Impact on Decisions and Outcomes Serious illness & awareness of prognosis á Accurately articulate prognosis á Advance care planning â Choose aggressive interventions at EOL â ICU care at EOL â die on life supports â chemo near death á Enroll in hospice earlier Weeks: JAMA 1998; Finlay: CA Cancer J Clin 2009; Wachterman: JAMA IM 2013; Liu: JPM 2014; Finlayson: JPM 2015; Tang: JPSM 2016; Lambden: JPM 2016.
Patient #1 Not discussed prognosis with Onc Shocked by prognosis Really wanted to know about Disney plans How to ask the right questions IOM 2013. Steffens: JAMA Surgery 2016.
How Well Do We Prognosticate? Clinician Estimates of Survival (n=1835) Selby JPSM 2011. Clinician Estimates of Survival ~2/3 rd overoptimistic Higher accuracy More experienced physicians Shorter patient-doctor relationship Patients and surrogates tend to be even more optimistic than providers Christakis: BMJ 2000; Gramling: JAMA Onc 2016; Trevino: Cancer 2016; White: JAMA 2016.
Clinician Estimates of Survival Improved when combined with Signs and symptoms Performance status Prediction tools Practice! Knaus Annals IM 1995; Glare BMJ 2003; Glare JPM 2008; Lau JPSM 2009; Finlay CA Cancer J Clin 2009; Siontis: Archives IM 2011; Casarett JPM 2012; Tavares: Palliat Med 2018. Signs and Symptoms Anorexia, weight loss, dysphagia, dyspnea, delirium Biological markers albumin CRP BNP Vigano Pall Med 2000; Glare BMJ 2003; Maltoni J Clin Onc 2005; Glare JPM 2008; Lau JPSM 2009; Finlay CA Cancer J Clin 2009; Mei JPM 2013; Mercadante JPSM 2013; Amano: JPSM 2016; York: JACC 2018. Performance Status Independent predictor of mortality Rapid decline predicts shorter survival Inouye: JAMA 1998; Vigano: Palliat Med 2000; Glare: BMJ 2003; Head: JPM 2005; Boyd: JAGS 2008; Lau: JPSM 2009; Finlay: CA Cancer J Clin 2009; Ling: CMAJ 2010; Cooper: BMJ 2010; Mei: JPM 2013; Kao: JPSM 2014.
Hundreds of them Prediction Tools Palliative Performance Scale (PPS) Functional status Surprise Question Clinician estimate Palliative Performance Scale PPS (%) Life Expectancy 10-20 < 1 week 30-60 months 70-100 > 1 year (Lung Cancer < 1 year) Sutradhar: JPSM 2013; Jansen: JPM 2015; Babcock: JPM 2016; Simmons: JPSM 2017.
Surprise Question Would I be surprised if this patient died in the next year? Asks death as a possibility Screen for palliative needs Johnson BMC Palliat Care 2003; Pattison: JPM 2001; Johnson: BMC Palliat Care 2003; Moss: Clin J Am Soc Nephrol 2008; ICSI Health Care Guideline: Palliative Care 2009; Cohen: Clin J Am Soc Nephrol 2010; Moss: JPM 2010; Downar: CMAJ 2017. Communicating Prognosis Ask-Tell-Ask https://vimeo.com/154784383
Communicating Prognosis Ask-tell-ask What is your sense? Present in a time range Hours-days; days-weeks; weeks-months; months-year; years; decades Increased patient understanding Back: Mastering Communication with Seriously Ill Patients 2010; Jackson: JPM 2013; Lambden: JPM 2016; Epstein: JCO 2016. Communicating Prognosis Techniques to incorporate prognostic information into decision-making Patient #2 86 y/o M with mild HTN, OA Hospitalized for CAP Day of discharge Daughter asks for colonoscopy for colon cancer screening before discharge PCP didn t want to order one How do you respond?
Patient #2 How do you respond (colon cancer screening)? 1. Ask his PCP to order as outpatient. 2. This test would not help you live longer or feel better. 3. You may not live long enough to benefit from this test. 4. This test is not indicated. Patient #2 How do you respond (colon cancer screening)? 1. Ask his PCP to order as outpatient. 2. This test would not help you live longer or feel better. 3. You may not live long enough to benefit from this test. 4. This test is not indicated. Patient #2 Almost all patients objected to the Choosing Wisely statement about not recommending cancer screening in those with limited life expectancy Positive messaging received better than negative Will it help me to live longer or feel better? Schnipper: JCO 2013; Choosing Wisely Workgroup AGS: JAGS 2014; Schoenborn: JAMA IM 2017.
Patient #3 83 y/o M with severe aortic stenosis HF hospitalizations COPD, mild cognitive impairment Walker/wheelchair s/p CVA Losing weight? TAVR Patient #3 What may best assist the patient in weighing the pros and cons of a TAVR? 1. Discuss using a visual aid and absolute risk format 2. Discuss NNT and relative risk format 3. Avoid complicating the discussion at this point by factoring in his comorbidities Patient #3 What may best assist the patient in weighing the pros and cons of a TAVR? 1. Discuss using a visual aid and absolute risk format 2. Discuss NNT and relative risk format 3. Avoid complicating the discussion at this point by factoring in his comorbidities
Decision Aids: Procedures Will this procedure help you live longer or feel better? Visual aids and absolute risk formats Avoid relative risks, NNT www.cardiosmart.org/decisionaids Comorbidities matter Zipkin: Annals IM 2014; Allen: JAMA IM 2018.
ICD Decision Aid Patient #4 85 y/o F 2 weeks s/p pontine CVA On ventilator No gag / airway protection Dense R hemiparesis with no improvement Delirium; probably can understand Letter board? Trach/PEG Best Case / Worse Case / Most Likely Scenario Facilitate shared decision making in setting of uncertainty Probable vs possible Narrative description + handwritten graphic aid Physical and cognitive function Schwarze: JPM 2013; Taylor: JAMA Surg 2017.
Trach/PEG Best Case: Hospital ~1 week LTAC for months-year Communicate with device Trach; PEG Live in NH; total care Most Likely: LTAC for months Rehospitalizations/ Complications/CVA Some communication with device Heavy secretions Die in LTAC/hospital Worst Case: Die hospital/ltac Complications/CVA Locked In Comfort Care Best Case: Be at home with hospice Die at home days-weeks Periods of alertness Family can be around her Not prolong suffering Most Likely: Die in hospice care center in days Mostly not awake Family can be around her Not prolong suffering Worst Case: Die in hospital in hours-days Not awake Family can be around her Not prolong suffering Taylor: JAMA Surg 2017. Resources Yourman: JAMA 2012.
Additional Resources Vitaltalk.org Non-cancer Dx < 6 months Salpeter: American Journal of Medicine 2012 Cancer Dx < 6 months Salpeter: Journal of Palliative Medicine 2012 Individualize prognostication Take Home Points Impacts decision making and outcomes Different approaches in delivering prognosis Positive phrasing Help to live longer or feel better? Decision Aids Scenario Planning x llll x