A Conceptual Definition of Quality of Life for People Living with an Implanted, Destination Therapy Left Ventricular Assist Device

Abstract

BACKGROUND: People with advanced heart failure experience persistently severe symptoms with increasingly impaired capacity and quality of life. Treatment options beyond palliative care are limited to heart transplantation or implantation with a mechanical pump that replaces the weakened heart’s function. The left ventricular assist device (LVAD) serves as a temporary bridge to transplant or bridge to recovery, or a permanent replacement as destination therapy (DT). While DT-LVAD recipients initially accept the device to extend life, there is a gap in understanding how DT-LVAD recipients define a life worth living, and how nursing and the health care team can help reach that goal. PURPOSE: This study’s purpose is to determine the conceptual definition of “quality of life” in people with a DT-LVAD. METHODS: A grounded theory study was conducted using a theoretical sample and open, selected and theoretical coding processes within the constant comparison method. Theoretical saturation was reached with 11 participants (age 32-79 years). RESULTS: Normalizing emerged as the basic social process. Participants reported that a life supported by battery-powered equipment is still a normal, human experience. A process of acceptance and adjustment occurred to Normalize a machine-dependent life. Although extending life was the original LVAD objective, recipient goals and needs evolved over time. Dependence on a machine to extend life did not replace the need for a life worth living. The conceptual definition of quality of life when living with a DT-LVAD emerged as: I am able to live my life and do what I want, with some adjustments. CONCLUSION: This conceptual definition of quality of life from the DT-LVAD recipient perspective enhances the health care team’s understanding and ability to improve DT-LVAD recipient lives. Life with an LVAD is not simply about survival; it is survival of quality that makes a difference and defines success.