title: Decision-Making of Patients With Implantable Cardioverter-Defibrillators at End of Life: Family Members' Experiences.
abstract: BACKGROUND
  Many patients with advanced heart failure (HF) experience the life-extending benefits of implantable cardioverter-defibrillators (ICD), but at the end stage of HF, patients may experience shocks with increasing frequency and change the plan for end-of-life (EOL) care including the deactivation of the ICD. This report describes family members' experiences of patients with ICD making decisions at EOL. Understanding the decision-making of patients with ICD at EOL can promote informed decision-making and improve the quality of EOL care.
  
  
  METHODS
  This pilot study used a mixed methods approach to test the effects of a nurse-guided discussion in decision-making about ICD deactivation (turning off the defibrillation function) at the EOL. Interviews were conducted, audiotaped, and transcribed in 2012 to 2013 with 6 family members of patients with advanced HF and ICDs. Three researchers coded the data and identified themes in 2014.
  
  
  RESULTS
  Three main themes described family members' experiences related to patients having HF with ICDs making health-care decision at EOL: decision-making preferences, patients' perception on ICD deactivation, and communication methods.
  
  
  CONCLUSIONS
  Health-care providers need to have knowledge of patients' decision-making preferences. Preferences for decision-making include the allowing of appropriate people to involve and encourages direct conversation with family members even when advance directives is completed. Information of ICD function and the option of deactivation need to be clearly delivered to patients and family members. Education and guidelines will facilitate the communication of the preferences of EOL care.
authors.affiliation: 1 Organizational Systems and Adult Health, University of Maryland School of Nursing, Baltimore, MD, USA.
authors.forename: Mei Ching
authors.initials: MC
authors.lastname: Lee
authors.affiliation: 2 School of Medicine and Divinity School, University of Chicago, Chicago, IL, USA.
authors.forename: Daniel P
authors.initials: DP
authors.lastname: Sulmasy
authors.affiliation: 3 Bloomberg School of Public Health, Johns Hopkins University, Baltimore, MD, USA.
authors.forename: Joseph
authors.initials: J
authors.lastname: Gallo
authors.affiliation: 4 School of Nursing, Johns Hopkins University, Baltimore, MD, USA.
authors.forename: Joan
authors.initials: J
authors.lastname: Kub
authors.affiliation: 5 School of Medicine, Johns Hopkins Berman Institute of Bioethics, Johns Hopkins University, Baltimore, MD, USA.
authors.forename: Mark T
authors.initials: MT
authors.lastname: Hughes
authors.affiliation: 6 School of Medicine, Johns Hopkins University, Baltimore, MD, USA.
authors.forename: Stuart
authors.initials: S
authors.lastname: Russell
authors.affiliation: 4 School of Nursing, Johns Hopkins University, Baltimore, MD, USA.
authors.forename: Anela
authors.initials: A
authors.lastname: Kellogg
authors.affiliation: 7 Cardiac Surgery, Johns Hopkins Hospital, Baltimore, MD, USA.
authors.forename: Sharon G
authors.initials: SG
authors.lastname: Owens
authors.affiliation: 6 School of Medicine, Johns Hopkins University, Baltimore, MD, USA.
authors.forename: Peter
authors.initials: P
authors.lastname: Terry
authors.affiliation: 8 School of Nursing, Johns Hopkins Berman Institute of Bioethics, Johns Hopkins University, Baltimore, MD, USA.
authors.forename: Marie T
authors.initials: MT
authors.lastname: Nolan
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001294:Attitude to Health; D003657:Decision Making; D017147:Defibrillators, Implantable; D005190:Family / Q000523:psychology*; D005260:Female; D006333:Heart Failure / Q000628:therapy*; D006801:Humans; D008297:Male; D008875:Middle Aged; D057240:Patient Preference / Q000523:psychology*; D010865:Pilot Projects; D011795:Surveys and Questionnaires; D013727:Terminal Care / Q000523:psychology*; D028761:Withholding Treatment
keywords: decision-making; end-of-life; family; heart failure; implantable cardioverter-defibrillators deactivation; quality of life