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

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.

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.

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

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

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

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

Decision

Decision

Decision

Decision

Informed Consent: Necessary but insufficient

We ignore how people think

Prospect Theory: Loss Aversion

Terror Management Theory

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.

Internet, Print, and Multimedia Information Suboptimal

Decision Aids Paper / OnlineVideo

Recognize Decision and Emotion

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

Inclusion of Family / Caregivers

Values Clarification

Importance of User Impression

Controlled Patient Testimonials HeartMatePro.comwww.patientdecisionaid.org

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

Decision Values

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

Implementation: DECIDE-LVAD Trial