1. Presenting Choices to Patients Larry Allen, MD INTERMACS May 16, 2015

2. Types of Medical Decision Making 1.Benefit >> Risk: When scientific evidence for benefit strongly outweighs harm, behavioral support (e.g. smoking cessation counseling, beta- blocker) designed to describe, justify, and recommend may be appropriate and complementary to decision support. 2.Benefits ~ Risks: Shared decision making is most easily applied to preference-sensitive decisions, where both clinicians and patients agree that equipoise exists, and decision support helps patients think through, forecast, and deliberate their options.

3. Types of Medical Decision Making 1.Benefit >> Risk: When scientific evidence for benefit strongly outweighs harm, behavioral support (e.g. smoking cessation counseling, beta- blocker) designed to describe, justify, and recommend may be appropriate and complementary to decision support. 2.Benefits ~ Risks: Shared decision making is most easily applied to preference-sensitive decisions, where both clinicians and patients agree that equipoise exists, and decision support helps patients think through, forecast, and deliberate their options.

4. LVAD IS a choice? “Survival with LVAD is almost always higher than survival without LVAD.” –Joseph Rogers

5. LVAD IS a choice “Survival with LVAD is almost always higher than survival without LVAD.” –Joseph Rogers “Everyone dies. So it’s not about choosing life or death, its choosing how you want to live and how you want to die.” –Larry Allen and others

6. LVAD IS a choice ! “Survival with LVAD is almost always higher than survival without LVAD.” –Joseph Rogers “Everyone dies. So it’s not about choosing life or death, its choosing how you want to live and how you want to die.” –Larry Allen and others “There are worse things than death.” –An inspirational LVAD decliner

7. Trade offs McIlvennan, Magid, Ambardekar, Thompson, Matlock, Allen. Circ Heart Fail. In Press.

8. Decision

9. Decision

10. Decision

11. Decision

12. Informed Consent: Necessary but insufficient

13. We ignore how people think

14. Prospect Theory: Loss Aversion

15. Terror Management Theory

16. REFLECTIVE Rational Utilitarian (risk v. benefit) “I thought about it an awful lot” AUTOMATIC Emotional Self-preservation (fear) “There was no choice” Heuristics for Stage D HF / LVAD McIlvennan et al. Circ Qual Care Outcomes 2014.

17. Internet, Print, and Multimedia Information Suboptimal

19. Decision Aids Paper / OnlineVideo

20. Recognize Decision and Emotion

21. Contrasting Summary of Options Highlight Uncertainty Present numbers in a digestible way

22. Inclusion of Family / Caregivers

23. Values Clarification

24. Importance of User Impression

25. Controlled Patient Testimonials HeartMatePro.comwww.patientdecisionaid.org

26. Pilot Data on DA Use 10 DT LVAD-specific questions Baseline and 1 month –31% increase in correct answers at 1 mo

27. Decision Values

29. Control Preferences PATIENT Baseline1-Month n=10n=9 Preferred Role Active=4 Shared=2 Passive=4 Active=5 Shared=3 Passive=1 n=8 Actual Role-- Active=4 Shared=3 Passive=1

30. Implementation: DECIDE-LVAD Trial

31. https://patientdecisionaid.org larry.allen@ucdenver.edu