title: LVAD-DT: Culture of Rescue and Liminal Experience in the Treatment of Heart Failure.
abstract: The purpose of this article is to investigate how cultural meanings associated with the left ventricular assist device (LVAD) inform acceptance and experience of this innovative technology when it is used as a destination therapy. We conducted open-ended, semistructured interviews with family caregivers and patients who had undergone LVAD-DT procedures at six U.S. hospitals. A grounded theory approach was used for the analysis. Thirty-nine patients and 42 caregivers participated. Participants described a sense of obligation to undergo the procedure because of its promise for salvation. However, once the device was implanted, patients described being placed into a liminal state of being neither sick nor healthy, with no culturally scripted role. Consideration of end-of-life decisions was complicated by the uncertainties about how patients with LVADs die. Pre-implantation communications among patient, family, and clinicians should take into account the impact of the technology on meaning, identity, and patient experience.
authors.affiliation: a Perelman School of Medicine at the University of Pennsylvania.
authors.forename: Frances K
authors.initials: FK
authors.lastname: Barg
authors.affiliation: b Children's Hospital of Philadelphia.
authors.forename: Katherine
authors.initials: K
authors.lastname: Kellom
authors.affiliation: c University of Pennsylvania.
authors.forename: Tali
authors.initials: T
authors.lastname: Ziv
authors.affiliation: d Yale-New Haven Hospital.
authors.forename: Sarah C
authors.initials: SC
authors.lastname: Hull
authors.affiliation: e Columbia University.
authors.forename: Selena
authors.initials: S
authors.lastname: Suhail-Sindhu
authors.affiliation: f University of Washington Medical Center.
authors.forename: James N
authors.initials: JN
authors.lastname: Kirkpatrick
mesh_terms: D001293:Attitude to Death; D017028:Caregivers / Q000523:psychology*; D003657:Decision Making; D005260:Female; D006333:Heart Failure / Q000523:psychology* / Q000628:therapy; D006353:Heart-Assist Devices / Q000523:psychology*; D006801:Humans; D008297:Male; D010361:Patients / Q000523:psychology*
keywords: advance directives; biotechnology; end-of-life issues; informed consent