title: Decision-making for destination therapy left ventricular assist devices: implications for caregivers.
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.
  
  
  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.
authors.affiliation: From the Section of Advanced Heart Failure and Transplantation, Division of Cardiology (C.K.M., L.A.A., J.L.), Colorado Cardiovascular Outcomes Research Consortium (C.K.M., L.A.A., D.D.M.) and Division of General Internal Medicine (C.N., D.D.M.), University of Colorado School of Medicine, Aurora; University of Colorado School of Nursing, Aurora (J.J.); and Division of General Internal Medicine, Mayo Clinic, Rochester, MN (K.M.S.). colleen.mcilvennan@ucdenver.edu.
authors.forename: Colleen K
authors.initials: CK
authors.lastname: McIlvennan
authors.affiliation: From the Section of Advanced Heart Failure and Transplantation, Division of Cardiology (C.K.M., L.A.A., J.L.), Colorado Cardiovascular Outcomes Research Consortium (C.K.M., L.A.A., D.D.M.) and Division of General Internal Medicine (C.N., D.D.M.), University of Colorado School of Medicine, Aurora; University of Colorado School of Nursing, Aurora (J.J.); and Division of General Internal Medicine, Mayo Clinic, Rochester, MN (K.M.S.).
authors.forename: Jacqueline
authors.initials: J
authors.lastname: Jones
authors.affiliation: From the Section of Advanced Heart Failure and Transplantation, Division of Cardiology (C.K.M., L.A.A., J.L.), Colorado Cardiovascular Outcomes Research Consortium (C.K.M., L.A.A., D.D.M.) and Division of General Internal Medicine (C.N., D.D.M.), University of Colorado School of Medicine, Aurora; University of Colorado School of Nursing, Aurora (J.J.); and Division of General Internal Medicine, Mayo Clinic, Rochester, MN (K.M.S.).
authors.forename: Larry A
authors.initials: LA
authors.lastname: Allen
authors.affiliation: From the Section of Advanced Heart Failure and Transplantation, Division of Cardiology (C.K.M., L.A.A., J.L.), Colorado Cardiovascular Outcomes Research Consortium (C.K.M., L.A.A., D.D.M.) and Division of General Internal Medicine (C.N., D.D.M.), University of Colorado School of Medicine, Aurora; University of Colorado School of Nursing, Aurora (J.J.); and Division of General Internal Medicine, Mayo Clinic, Rochester, MN (K.M.S.).
authors.forename: JoAnn
authors.initials: J
authors.lastname: Lindenfeld
authors.affiliation: From the Section of Advanced Heart Failure and Transplantation, Division of Cardiology (C.K.M., L.A.A., J.L.), Colorado Cardiovascular Outcomes Research Consortium (C.K.M., L.A.A., D.D.M.) and Division of General Internal Medicine (C.N., D.D.M.), University of Colorado School of Medicine, Aurora; University of Colorado School of Nursing, Aurora (J.J.); and Division of General Internal Medicine, Mayo Clinic, Rochester, MN (K.M.S.).
authors.forename: Keith M
authors.initials: KM
authors.lastname: Swetz
authors.affiliation: From the Section of Advanced Heart Failure and Transplantation, Division of Cardiology (C.K.M., L.A.A., J.L.), Colorado Cardiovascular Outcomes Research Consortium (C.K.M., L.A.A., D.D.M.) and Division of General Internal Medicine (C.N., D.D.M.), University of Colorado School of Medicine, Aurora; University of Colorado School of Nursing, Aurora (J.J.); and Division of General Internal Medicine, Mayo Clinic, Rochester, MN (K.M.S.).
authors.forename: Carolyn
authors.initials: C
authors.lastname: Nowels
authors.affiliation: From the Section of Advanced Heart Failure and Transplantation, Division of Cardiology (C.K.M., L.A.A., J.L.), Colorado Cardiovascular Outcomes Research Consortium (C.K.M., L.A.A., D.D.M.) and Division of General Internal Medicine (C.N., D.D.M.), University of Colorado School of Medicine, Aurora; University of Colorado School of Nursing, Aurora (J.J.); and Division of General Internal Medicine, Mayo Clinic, Rochester, MN (K.M.S.).
authors.forename: Daniel D
authors.initials: DD
authors.lastname: Matlock
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001293:Attitude to Death; D017028:Caregivers / Q000523:psychology*; D002755:Choice Behavior; D017281:Cost of Illness; D004644:Emotions; D005195:Family Relations; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006333:Heart Failure / Q000175:diagnosis / Q000401:mortality / Q000503:physiopathology / Q000523:psychology / Q000628:therapy*; D006353:Heart-Assist Devices; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D018802:Patient-Centered Care; D036301:Qualitative Research; D011788:Quality of Life; D016896:Treatment Outcome; D016312:Treatment Refusal; D016277:Ventricular Function, Left
keywords: heart failure; patient-centered care