Decision-Making for Destination Therapy Left Ventricular Assist Devices: Implications for Caregivers. (March 2015)

• Record Type: Journal Article
• Authors: McIlvennan, Colleen K.; Jones, Jacqueline; Allen, Larry A.; Lindenfeld, JoAnn; Swetz, Keith M.; Nowels, Carolyn; Matlock, Daniel D.
• Is Part Of: Circulation. Volume 8:Number 2(2015)
• Publication Date: 2015-03
• Subjects: heart failure -- patient-centered care; Cardiovascular system -- Diseases -- Treatment -- Periodicals; Cardiovascular system -- Diseases -- Research -- Periodicals; Outcome assessment (Medical care) -- Periodicals; Evidence-based medicine -- Periodicals; 616.1007
• DOI: 10.1161/CIRCOUTCOMES.114.001276
• Languages: English
• ISSNs: 1941-7713

Abstract

Abstract : Background—: Implanting centers often require the identification of a dedicated caregiver before destination therapy left ventricular assist device (DT LVAD) implantation; however, the caregiver experience surrounding this difficult decision is relatively unexplored. Methods and Results—: From October 2012 through July 2013, we conducted semistructured, in-depth interviews with caregivers of patients considering DT LVAD. Data were analyzed using a mixed inductive and deductive approach. We interviewed 17 caregivers: 10 caregivers of patients living with DT LVAD, 6 caregivers of patients who had died with DT LVAD, and 1 caregiver of a patient who had declined DT LVAD. The themes identified, which could also be considered dialectical tensions, are broadly interpreted under 3 domains mapping to decision context, process, and outcome: (1) the stark decision context, with tension between hope and reality; (2) the challenging decision process, with tension between wanting loved ones to live and wanting to respect loved ones' wishes; and (3) the downstream decision outcome, with tension between gratitude and burden. Conclusions—: Decision-making surrounding DT LVAD should incorporate decision support for patients and caregivers. This should include a focus on caregiver burden and the predictable tensions that caregivers experience. Abstract : Supplemental Digital Content is available in the text.