title: Reasons Why Eligible Candidates Decline Left Ventricular Assist Device Placement.
abstract: BACKGROUND
  A greater understanding of how beliefs and perceptions inform LVAD placement refusals can help ensure that standards for informed decision making are met. We report on the factors that influence refusal and what accounts for changes in decliners' decision-making process when, and if, that occurs.
  
  
  RESULTS
  We identified candidates (8 bridge to transplant; 6 destination therapy, 7 without designation) who declined LVAD placement (n = 21), 11 of whom were identified prospectively from February 2014 to March 2015, and 10 of whom were identified retrospectively with the use of our program database. Of these 21 decliners, 11 candidates persistently declined LVAD placement, with a median time of 175 days elapsing between time of LVAD offer and March 4, 2015. Ten candidates declined for an average of 224 days before agreeing to LVAD placement. From March 2014 to March 2015, we conducted structured interviews with LVAD decliners. Interviews were audio recorded, transcribed verbatim, and analyzed quantitatively with the use of Atlas.ti. The findings reflect that refusal can evolve over time. Decliners report that their initial refusals were made reflexively, but the 10 decliners who ultimately opted for LVAD placement changed their decisions as symptoms worsened. Decliners have concerns about the impacts of LVAD treatment on mobility, and they distrust LVAD technology. Some decliners believe LVAD placement would affect their ability to receive a transplant. Finally, decliners believe that they are not sick enough for LVAD placement when they are stabilized with medical management.
  
  
  CONCLUSIONS
  Decliners' perspectives are integral for improving informed consent and refusal processes. Our analysis revealed decliners' decision-making processes and factors influencing their decisions. We provide several clinically based practical recommendations based on our findings.
authors.affiliation: Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas; Bioethics Program, Houston Methodist Hospital, Houston, Texas. Electronic address: cbruce@bcm.edu.
authors.forename: Courtenay R
authors.initials: CR
authors.lastname: Bruce
authors.affiliation: Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas.
authors.forename: Kristin M
authors.initials: KM
authors.lastname: Kostick
authors.affiliation: Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas.
authors.forename: Estevan D
authors.initials: ED
authors.lastname: Delgado
authors.affiliation: Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas.
authors.forename: Lidija A
authors.initials: LA
authors.lastname: Wilhelms
authors.affiliation: Department of Health Services Research, M.D. Anderson Cancer Center, University of Texas, Houston, Texas; Houston Methodist DeBakey Heart and Vascular Center and J.C. Walter Jr Transplant Center, Houston Methodist Hospital, Houston, Texas.
authors.forename: Robert J
authors.initials: RJ
authors.lastname: Volk
authors.affiliation: Department of Bioethics, Cleveland Clinic, Cleveland, Ohio.
authors.forename: Martin L
authors.initials: ML
authors.lastname: Smith
authors.affiliation: School of Public Health, University of Texas, Houston, Texas.
authors.forename: Sheryl A
authors.initials: SA
authors.lastname: McCurdy
authors.affiliation: Houston Methodist DeBakey Heart and Vascular Center and J.C. Walter Jr Transplant Center, Houston Methodist Hospital, Houston, Texas.
authors.forename: Matthias
authors.initials: M
authors.lastname: Loebe
authors.affiliation: Houston Methodist DeBakey Heart and Vascular Center and J.C. Walter Jr Transplant Center, Houston Methodist Hospital, Houston, Texas.
authors.forename: Jerry D
authors.initials: JD
authors.lastname: Estep
authors.affiliation: Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas.
authors.forename: Jennifer S
authors.initials: JS
authors.lastname: Blumenthal-Barby
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D003657:Decision Making; D005260:Female; D006333:Heart Failure / Q000175:diagnosis / Q000523:psychology* / Q000601:surgery; D006353:Heart-Assist Devices / Q000523:psychology* / Q000639:trends; D006801:Humans; D007258:Informed Consent / Q000523:psychology*; D008297:Male; D008875:Middle Aged; D010349:Patient Compliance / Q000523:psychology; D012189:Retrospective Studies; D011795:Surveys and Questionnaires
keywords: Decision making; ethics; informed consent; left ventricular assist device