Perspectives from mechanical circulatory support coordinators on the pre-implantation decision process for destination therapy left ventricular assist devices

Abstract

Objective To understand mechanical circulatory support (MCS) coordinators’ perspectives related to destination therapy left ventricular assist devices (DT LVAD) decision making Background MCS coordinators are central to the team that interacts with patients considering DT LVAD, and are well positioned to comment upon the pre-implantation process. Methods From August 2012–January 2013, MCS coordinators were recruited to participate in semi-structured, in-depth interviews. Established qualitative approaches were used to analyze and interpret data. Results Eighteen MCS coordinators from 18 programs were interviewed. We found diversity in coordinators’ roles and high programmatic variability in how DT LVAD decisions are approached. Despite these differences, three themes were consistently recommended: 1) DT LVAD is a major patient-centered decision: “you’re your best advocate…this may not be the best choice for you”; 2) this decision benefits from an iterative, multidisciplinary process: “It is not a one-time conversation”; and 3) this process involves a tension between conveying enough detail about the process yet not overwhelming patients: “It’s sometimes hard to walk that line to not scare them but not paint a rainbow and butterflies picture.” Conclusions MCS coordinators endorsed a shared decision-making process that starts early, uses non-biased educational materials, and involves a multidisciplinary team sensitive to the tension between conveying enough detail about the therapy yet not overwhelming patients.

Development of a Decision Aid for Patients With Advanced Heart Failure Considering a Destination Therapy Left Ventricular Assist Device

“…Additionally, we further explored domains identified as important during the framework-guided needs assessment, as detailed in the introduction (8,12,13). …”

“…Unfortunately, patients, caregivers, and clinicians have had suboptimal guidance and support for DT LVAD decision-making: existing informed consents are written at a high reading comprehension level, while industry materials are optimistically biased, contain outdated statistics, and fail to adequately discuss risks (7). These industry materials are widely used among LVAD centers (8). While the ethical mandate surrounding informed consent is clear (9), achieving true informed consent in this setting is challenging when using consent forms and industry materials alone (4).…”

“…However, only a small minority are related to decisions faced by people with advanced illness, and end-of-life decisions were specifically excluded from the Cochrane review of DAs (6). Currently, no widely available DT LVAD informational materials meet criteria for a patient DA (7), and no standard education and consent processes exist across different hospitals and LVAD programs (8). …”

“…In order to first understand stakeholders’ decisional needs, a needs assessment was performed with patients, caregivers, and mechanical circulatory support (MCS) coordinators (8,12,13), which revealed several important findings: 1) the decision-making process is highly emotional and often dominated by fear of death; 2) these emotions and the high-stakes nature of the clinical circumstances create a situation where many patients do not cognitively engage declination of DT LVAD as an option, instead focusing on doing “anything it takes”; 3) caregivers are deeply involved in the decision-making process and subsequent care of the patient and often feel a tension between gratitude and burden; 4) caregivers often project personal desires onto patients’ decision-making, with many feeling a tension between wanting to be involved while also wanting to support the patients’ decisions; 5) MCS coordinators desire an iterative, multi-disciplinary approach to DT LVAD education; and 6) coordinators feel a tension between wanting to explain all aspects of DT LVAD to patients and not wanting to overwhelm or “scare” them away from the device.…”

Mechanical Complications of Myocardial Infarction

“…Implantation of a long-term ventricular assist device as a bridge to transplantation or as a destination therapy is an established life-sustaining treatment option for select patients [76,77,78,79].…”