Discussing Prognosis David Ross Russell MD ProHealth Physicians Inc.
Prognosis- peeling back the layers
Not a new Science Psalm 39 LORD, make me to know mine end, and the measure of my days. Hippocrates On Prognosis Hippocratic facies
What are the reasons we need prognostic information? Administrative Medical Decision Making Patient Decision Making
Medicare Hospice Benefit Eligibility An individual is considered to be terminally ill if the medical prognosis is that the individual s life expectancy is six months or less if the illness runs its normal course.
Medical Decision Making Appropriate treatment options for primary condition Appropriate treatment for secondary conditions Appropriate preventive interventions Able to advise patient and family
Patient Care Considerations Allow informed decision making for medical issues Allow informed decision making for financial issues Allow informed decision making for family/social issues Allow end of life planning Maintain honesty in physician patient relationship Concern re giving up in face poor prognosis
What is the knowledge and limit of prognostic data?
Prognostic/performance Scales Karnofsky score Palliative Performance Scale Palliative Prognostic Score Disease specific scales
Karnofsky score 100 Normal no complaints; no evidence of disease. Able to carry on normal activity and to work; no special care needed. Unable to work; able to live at home and care for most personal needs; varying amount of assistance needed. 90 80 70 60 50 Able to carry on normal activity; minor signs or symptoms of disease. Normal activity with effort; some signs or symptoms of disease. Cares for self; unable to carry on normal activity or to do active work. Requires occasional assistance, but is able to care for most of his personal needs. Requires considerable assistance and frequent medical care. 40 Disabled; requires special care and assistance. Unable to care for self; requires equivalent of institutional or hospital care; disease may be progressing rapidly. 30 20 Severely disabled; hospital admission is indicated although death not imminent. Very sick; hospital admission necessary; active supportive treatment necessary. 10 Moribund; fatal processes progressing rapidly. 0 Dead
Palliative Performance Scale % Ambulation 100 Full 90 Full 80 Full 70 Reduced 60 Reduced 50 Mainly sit/lie Mainly 40 in Bed Activity Level Evidence of Disease Normal No Disease Normal Some Disease Normal with Effort Some Disease Can t do normal job or work Some Disease Can t do hobbies or housework Significant Disease Can t do any work Extensive Disease Self-Care Intake Level of Consciousn ess Full Normal Full Full Normal Full Full Normal or Reduced Full Estimated Median Survival N/A Full As above Full 145 Occasional Assistance Needed Considerable Assistance Needed As above As above As above Mainly Assistance As above in Days (a) (b) (c) N/A Full or Confusion 29 4 Full or Confusion 30 11 Full or Drowsy or Confusion 18 8 30 Bed Bound As above Total Care Reduced As above 8 5 20 Bed Bound As above As above Minimal As above 4 2 Drowsy or 10 Bed Bound As above As above Mouth Care Only Coma 1 1 0 Death - - - -- a. Survival post-admission to an inpatient palliative unit, all diagnoses (Virik 2002). b. Days until inpatient death following admission to an acute hospice unit, diagnoses not specified (Anderson 1996). c. Survival post admission to an inpatient palliative unit, cancer patients only (Morita 1999). 108 41 6
The Palliative Prognostic Score (PaP) CRITERION ASSESSMENT PARTIAL SCORE No 0 Dyspnea Yes 1 No 0 Anorexia Yes 1.5 >30 0 10-20 2.5 >12 0 12-11 2 10-6 2.5 6-5 4.5 4-3 6 2-1 8.5 <8.5 0 8.6-11 0.5 >11 1.5 20-40% 0 12-19.9% 1 < 12% 2.5 30 DAY SURVIVAL TOTAL SCORE A >70% 0-5.5 B 30-70% 5.6-11 C < 30% 11.1-17.5 Karnofsky Performance Status Clinical Prediction of Survival (weeks) Total WBC (x10 9 /L Lymphocyte Percentage RISK GROUP
Confidence diminishes with increased Prognosis Days PaP Score
End stage Heart disease (CHF) Stage IV NYHA classification Ejection fraction 20% Maximal medical treatment EFFECT study (JAMA 2003) scoring system SHFM (Seattle Heart Failure Model)- scoring resulting in 1,2 3yr mortality probability
End Stage Renal Failure 1 Prognosis if discontinuing dialysis with non functioning kidneys 7-10d Prognosis if choosing not to start dialysis dependant on egfr- death occurs with egfr circa 5 ml/min/1.73m 2 Karnofsky performance maintained until c 7 days before death 1 Burns and Carson, Journal Palliative Medicine 2007
End Stage Liver Disease Decompensated liver failure average- 2y MELD score Hepatorenal syndrome On Transplant list (most patients die first)
MELD score Model for End-stage Liver Disease INR, Creatinine, Bilirubin MELD Score Predicted 6 Predicted month 12 month survival survival Predicted 24 month survival 0-9 98% 93% 90% 10-19 92% 86% 80% 20-29 78% 71% 66% 30-39 40% 37% 33%
Dementia Medicare issued criteria: severe impairmentfeeding, speech, incontinence, co-morbidities Poorly correlated to actual prognosis (Schonwetter et al, AJHPM 2003) Advanced age, anorexia were valid predictors of poor prognosis in that study (p< 0.02, 0.001) Dementia prognosis approx half DSS Actuarial figure (Larson, Annals IM 2004) Co-morbidities significantly lessen that
ADEPT Dementia Prognosis Scoring Name :.. date:. Risk Factor Points Score Recent NH admission 3.3 Age 65 69 1 70 74 2 75 79 3 80 84 4 85 89 5 90 94 6 95 99 7 100+ 8 Male 3.3 Shortness of breath 2.7 Pressure ulcer stage 2+ 2.2 ADL score 28 2.1 Bedbound most of day 2.1 Insufficient PO intake 2 Bowel incontinence 1.9 BMI <18.5 1.8 Weight loss 1.6 Congestive Heart Failure 1.5 TOTAL: ADL score: total dependence in bed mobility, dressing, toileting, transfer, eating, grooming, locomotion Insufficient Oral intake: Not consuming almost all liquids in prev 3 d, or >25% food uneaten at most meals Recent weight loss: >5% over prior 30d or >10% over prior 180d Scores of 16 and above correlated to observed 6m mortality >50% (Mitchell et al JPSM 11/5/10)
How do Health Care Professionals use the data we have?
How do we use the data we have? Physicians overestimate prognosis Physicians present a consciously more optimistic prognosis than they privately believe Physicians underestimate patients desire to know their prognosis
Bias toward longer prognosis 515 Dutch Nursing home patients with noncancer diagnoses. (Brandt et al, JPSM 2006) Categories of Actual Survival predicted survival (missing=4) Optimistic Accurate prediction (earlier prediction death) Pessimistic prediction (later death) % % % Days Median survival Death within 0 7 days (n=267) Death within 8 21 days (n=175) Death within 22 42 days (n=69) Not applicable 92.9 7.1 2 68.6 16 15.4 5 52.2 13 34.8 21
Bias Cancer diagnoses Meta-analysis of Cancer patients actual vs predicted prognosis (Glare et al, BMJ 2003) Consistent tendency to overestimate prognosis
Summary of Studies Comparing Physicians' Estimated Survival to Patients' Actual Survival Primary investigator Year Number of Doctors Number of Patients Median estimated survival (wk) Median actual survival (wk) Estimated survival/ actual survival Parkes 1972 NR 168 4.5 a 2.5 a 1.8 Evans 1985 3 42 NR NR 3.2 c Heyse-Moore 1987 NR 50 8 2 4 Forster 1988 3 108 7 b 3.5 2 Maltoni 1994 4 100 6 5 1.2 Christakis 2000 343 468 NR 3.4 5.3 c NR, not reported. a Values estimated from graph in paper. b Seven weeks calculated through statement in paper that survival was overestimated by 3.4 weeks on average. c Ration of mean estimated survival/mean survival.
Bias- Communication Physicians are reluctant to communicate poor prognosis When they do communicate prognosis, often consciously optimistic
Bias- Selective disclosure Lamont and Cristakis, Annals IM 2001. 300 cancer patients referred for hospice.
What information is there on what patients and families actually want?
Patients and Families expressed preferences Patients want to discuss prognosis c 80% of time Families want patient to have discussion of prognosis 55% of time Patients express wish for good news Patients desire their physician to remain optimistic
What do Patients want? Not all patients want the same thing Patients and families may have different expressed desires Greater certainty than the evidence permits To beat the prognosis Room to plan Hope Honesty
Approach to discussion of Prognosis (Based on Back and Arnold JCO 2006) Establish patients desire re discussion prognosis If unwilling, acknowledge concerns, both emotional and informational. Discuss concernsoften fruitful in itself. Consider if misperception of prognosis is causing inappropriate decision making, If so, propose discussion with surrogate. If ambivalent- name ambivalence and discuss If willing, proceed with discussion
How do we meet Patient s need? Know the data/tools. Know the bias Know the uncertainty Be willing to go there Understand ambivalence Be flexible Understand cultural differences Avoid truth dumping
Girgis and Sanson-Fisher ensuring privacy allowing adequate time, assessing patients' understanding, giving information about diagnosis and prognosis simply and honestly, avoiding euphemisms, encouraging patients to express feelings, being empathic, giving a broad but realistic time-frame concerning prognosis, arranging a review.
SPIKES- Baile et al Setting up Perception Invitation Knowledge Emotions Strategy and summary
Questions