Abstract 92: Approaches to Decision Support and Preparation for Destination Therapy Left Ventricular Assist Device: A Nationwide Sample of Mechanical Circulatory Support Coordinators

Abstract

Background: Patients offered left ventricular assist device as destination therapy (DT LVAD) are typically faced with the decision to undergo major surgery and live their remaining life dependent on mechanical circulatory support (MCS) or transition to end-of-life care. MCS coordinators are often the first point of contact and provide education and support to patients making this difficult decision. Methods: We conducted semi-structured, in-depth interviews with MCS coordinators in order to characterize the range of decision support and preparation offered to patients considering DT LVAD and to solicit input on how to optimize that process. Interviews took place from August 2012 to January 2013. All interviews were digitally recorded and data were analyzed using a directed content analysis approach. Results: Our sample included 20 MCS coordinators from different programs around the United States. The following primary themes emerged: 1) cardiothoracic surgeons or heart failure cardiologists were primarily responsible for presenting risks and benefits of DT LVAD whereas coordinators provided the majority of patient education regarding practical concerns and patient/caregiver responsibilities; 2) existing consents and industry material are too complicated or overly optimistic; 3) tension exists between creating accurate expectations of DT LVADs and providing clinical reassurance - “I don’t want to scare them away from a life-saving therapy either, so I try to paint a realistic picture but not so realistic that it scares them;” and 4) when asked to theoretically consider if they were offered DT LVAD, the majority of coordinators stated that it would be a difficult decision influenced by their own age, co-morbidities, and family dynamics - “I think it would really depend on where I was in my life at that point in time.” Conclusions: MCS coordinators are in a unique position to assist in decision making and preparation for patients eligible for DT LVADs. In order to improve this process, a multidisciplinary and iterative approach appears helpful in conveying the risks and benefits of DT LVAD. Consents and educational materials must be simplified, patient-centered, and free of bias. Patient needs and values should be defined up front to help tailor the process. The uncertainty of many MCS coordinators, who arguably best understand the totality of therapy, to theoretically pursue DT LVAD themselves highlights the difficult trade-offs and personalized nature of this decision.