Background Patients are offered implantable defibrillators (ICDs) for the prevention of sudden cardiac death (SCD). However, patientsÕ decision-making process (DMP) of whether or not to accept an ICD has not been explored. We asked patients about their decision making when offered an ICD.
Increasing numbers of cardiovascular patients are receiving implantable cardioverter defibrillators (ICDs) for primary prevention of sudden cardiac death (SCD). This report examines patients' perspectives on related end-of-life issues. Using a grounded theory approach, audiotaped, semistructured interviews were undertaken with 30 participants from two ICD referral centres in southwestern Ontario (24 who accepted an ICD and 6 who declined). Interview transcripts, researcher memos, member checks, published literature, and participant demographics were analyzed using NVivo7. Most participants were male, had comorbidities and an ejection fraction of less than 30 percent, and ranged in age from 26 to 87. Consensus was reached by three research team members on three main themes: quality versus quantity of life, preferred mode of death, and the technical realities of the ICD. The ICD was considered in relation to both quantity and quality of life. Most participants focused on the prevention of SCD, not the implications of the ICD for death by any other cause. Participants advocated for incorporating the ICD into advance care planning. Our findings have implications for the development of advance care plans and education of health professionals.
Background: Research ethicists have recently declared a new ethical imperative: that researchers should communicate the results of research to participants. For some analysts, the obligation is restricted to the communication of the general findings or conclusions of the study. However, other analysts extend the obligation to the disclosure of individual research results, especially where these results are perceived to have clinical relevance. Several scholars have advanced cogent critiques of the putative obligation to disclose individual research results. They question whether ethical goals are served by disclosure or violated by non-disclosure, and whether the communication of research results respects ethically salient differences between research practices and clinical care. Empirical data on these questions are limited. Available evidence suggests, on the one hand, growing support for disclosure, and on the other, the potential for significant harm.
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