Colleen K McIlvennan1, Larry A Allen2, Carolyn Nowels2, Andreas Brieke2, Joseph C Cleveland2, Daniel D Matlock2. 1. From the Section of Advanced Heart Failure and Transplantation, Division of Cardiology (C.K.M., L.A.A., A.B.), Division of General Internal Medicine (C.N., D.D.M.), and Division of Cardiothoracic Surgery (J.C.C.), University of Colorado School of Medicine, Aurora; and Colorado Cardiovascular Outcomes Research Consortium, Denver (C.K.M., L.A.A., D.D.M.). colleen.mcilvennan@ucdenver.edu. 2. From the Section of Advanced Heart Failure and Transplantation, Division of Cardiology (C.K.M., L.A.A., A.B.), Division of General Internal Medicine (C.N., D.D.M.), and Division of Cardiothoracic Surgery (J.C.C.), University of Colorado School of Medicine, Aurora; and Colorado Cardiovascular Outcomes Research Consortium, Denver (C.K.M., L.A.A., D.D.M.).
Abstract
BACKGROUND: Destination therapy left ventricular assist devices (DT LVADs) are one of the most invasive medical interventions for end-stage illness. How patients decide whether or not to proceed with device implantation is unknown. We aimed to understand the decision-making processes of patients who either accept or decline DT LVADs. METHODS AND RESULTS: Between October 2012 and September 2013, we conducted semistructured, in-depth interviews to understand patients' decision-making experiences. Data were analyzed using a mixed inductive and deductive approach. Twenty-two eligible patients were interviewed, 15 with DT LVADs and 7 who declined. We found a strong dichotomy between decision processes with some patients (11 accepters) being automatic and others (3 accepters, 7 decliners) being reflective in their approach to decision making. The automatic group was characterized by a fear of dying and an over-riding desire to live as long as possible: "[LVAD] was the only option I had…that or push up daisies…so I automatically took this." By contrast, the reflective group went through a reasoned process of weighing risks, benefits, and burdens: "There are worse things than death." Irrespective of approach, most patients experienced the DT LVAD decision as a highly emotional process and many sought support from their families or spiritually. CONCLUSIONS: Some patients offered a DT LVAD face the decision by reflecting on a process and reasoning through risks and benefits. For others, the desire to live supersedes such reflective processing. Acknowledging this difference is important when considering how to support patients who are faced with this complex decision.
BACKGROUND: Destination therapy left ventricular assist devices (DT LVADs) are one of the most invasive medical interventions for end-stage illness. How patients decide whether or not to proceed with device implantation is unknown. We aimed to understand the decision-making processes of patients who either accept or decline DT LVADs. METHODS AND RESULTS: Between October 2012 and September 2013, we conducted semistructured, in-depth interviews to understand patients' decision-making experiences. Data were analyzed using a mixed inductive and deductive approach. Twenty-two eligible patients were interviewed, 15 with DT LVADs and 7 who declined. We found a strong dichotomy between decision processes with some patients (11 accepters) being automatic and others (3 accepters, 7 decliners) being reflective in their approach to decision making. The automatic group was characterized by a fear of dying and an over-riding desire to live as long as possible: "[LVAD] was the only option I had…that or push up daisies…so I automatically took this." By contrast, the reflective group went through a reasoned process of weighing risks, benefits, and burdens: "There are worse things than death." Irrespective of approach, most patients experienced the DT LVAD decision as a highly emotional process and many sought support from their families or spiritually. CONCLUSIONS: Some patients offered a DT LVAD face the decision by reflecting on a process and reasoning through risks and benefits. For others, the desire to live supersedes such reflective processing. Acknowledging this difference is important when considering how to support patients who are faced with this complex decision.
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