1. The EPEC-O Curriculum is produced by the EPEC TM Project with major funding provided by NCI, with supplemental funding provided by the Lance Armstrong Foundation. Education in Palliative and End-of-life Care - Oncology The Project EPEC-O TM

2. EPECEPECOOEPECEPECOOO EPECEPECOOEPECEPECOOO Module 8 Clarifying Diagnosis and Prognosis Module 8 Clarifying Diagnosis and Prognosis EPEC - Oncology Education in Palliative and End-of-life Care - Oncology

3. Objectives l Describe the difficulty with prognostication l Discuss limitations of current prognostic models l Apply the 6-step protocol to communicate diagnosis and prognosis l Describe the difficulty with prognostication l Discuss limitations of current prognostic models l Apply the 6-step protocol to communicate diagnosis and prognosis

4. Video

5. Importance l Most people want to know l Strengthens physician-patient relationship l Fosters collaboration l Permits patients, families to plan, cope l Most people want to know l Strengthens physician-patient relationship l Fosters collaboration l Permits patients, families to plan, cope

6. Inaccuracy of prognostication 9 Studies of Clinical Predictions of Survival vs Actual Survival Study # Patients Median CPS (days) Median AS (days) Parkes et al 1 71 28 (45-56) 21 (9-34) Evans et al 2 42 81 (28-182) 120 (43-180) Heyse-Moore et al 3 50 56 (33-84) 14 (7-28) Maltoni et al 4 100 42 (28-56) 32 (13-63) Maltoni et al 5 530 42 (28-70) 32 (13-62) Oxenham et al 6 21 21 (14-35) 15 (9-25) Maltoni et al 7 451 42 (21-70) 33 (14-62) Christakis et al 8 325 77 (28-133) 24 (12-58) Overall1,591 42 (28-84) 29 (13-62)

7. Clinical predictions vs. actual survival l Over optimistic by factor of 3 - 5 Glare P. BMJ. 2003.

8. Clinical predictions vs. actual survival l Relationships between predictions and survival l Actual is 30% less than predicted l Survival = predicted  1 week for 25% l Predicted  survival + 4 weeks for 27% l Relationships between predictions and survival l Actual is 30% less than predicted l Survival = predicted  1 week for 25% l Predicted  survival + 4 weeks for 27% Glare P. BMJ. 2003.

9. Sources of prognostic information l Physician prediction l Stage-specific survival data l Performance status l Signs and symptoms l Integrated models l Physician prediction l Stage-specific survival data l Performance status l Signs and symptoms l Integrated models

10. Sources of survival data... l Stage specific survival curves l Natural history studies l Randomized trials with a ‘best supportive care’ arm l Stage specific survival curves l Natural history studies l Randomized trials with a ‘best supportive care’ arm

11. Natural history studies Cancer type N Median survival (Years) Actuarial 5-year survival % Breast 14 2502.718.4 1,0222.319.8 Head and neck 15 8080.320

12. Performance status and prognosis... l Independent prognostic factor l Karnofsky Performance Score <50: survival <8 weeks l Independent prognostic factor l Karnofsky Performance Score <50: survival <8 weeks Mor V, et al. Cancer. 1984.

13. ... Karnofsky Score as predictor of survival KPS Survival in days  50 86.1 30-4049.8 10-2016.8 Reuben DB, Mor V, Hiris J. Arch Intern Med. 1988.

14. Symptom Median survival Dyspnea 5 <30 days Dysphagia 5 <30 days Confusion/delirium 23,24 <28 days Xerostomia 20 <50 days Weight loss (  10 kg) <28 days Clinical signs and symptoms as prognostic indicators in patients with advanced disease

15. Prognostic impact Index Median survival (Months) Hypercalcemia 1 - 4.5 Brain metastases plus surgery 9.5 Brain metastases without surgery 4 Pleural effusion 3

16. 6-step protocol... 1.Getting started 2.Find out what the patient knows 3.Find out how much the patient wants to know 1.Getting started 2.Find out what the patient knows 3.Find out how much the patient wants to know Adapted from Robert Buckman

17. Communicating prognosis... l Some patients want to plan l Others are seeking reassurance l Some patients want to plan l Others are seeking reassurance

18. ... Communicating prognosis... l Limits of prediction Hope for the best, plan for the worst Better sense over time Can’t predict surprises, get affairs in order l Reassure availability, whatever happens l Limits of prediction Hope for the best, plan for the worst Better sense over time Can’t predict surprises, get affairs in order l Reassure availability, whatever happens

19. ... Communicating prognosis... l Inquire about reasons for asking “What are you expecting to happen?” “How specific do you want me to be?” “What experiences have you had with: others with same illness?” others who have died?” l Inquire about reasons for asking “What are you expecting to happen?” “How specific do you want me to be?” “What experiences have you had with: others with same illness?” others who have died?”

20. ... 6-step protocol 4.Share the information 5.Respond to patient, family feelings 6.Plan, follow-up 4.Share the information 5.Respond to patient, family feelings 6.Plan, follow-up Adapted form Robert Buckman

21. ... Communicating prognosis l Patients vary ‘Planners’ want more details Those seeking reassurance want less l Avoid precise answers Hours to days...months to years Average l Patients vary ‘Planners’ want more details Those seeking reassurance want less l Avoid precise answers Hours to days...months to years Average

22. Summary l Prognostication is inexact l Karnofsky performance status is an important prognostic factor l In advanced (<3 months) disease, symptoms predict prognosis l Prognosis is difficult to define for patients with survival >6 months l Prognostication is inexact l Karnofsky performance status is an important prognostic factor l In advanced (<3 months) disease, symptoms predict prognosis l Prognosis is difficult to define for patients with survival >6 months