Background:Authors of expert guidelines and consensus statements recommend that decisions at the end-of-life (EOL) be discussed before and after implantation of an implantable cardioverter defibrillator (ICD) and include promotion of shared decision-making. The purpose of this study was to describe experiences, attitudes, and knowledge about the ICD at EOL in ICD recipients and to compare experiences, attitudes, and knowledge in ICD recipients with and without heart failure (HF). We further sought to determine factors associated with having discussions about EOL.Methods and Results:Using a national registry in Sweden of all ICD recipients (n=5355) in 2012, an EOL questionnaire, along with other ICD-related measures, was completed by 2403 ICD recipients. Of the participants, 1275 (n=53%) had HF. Their responses in the knowledge, experience, and attitude domains were almost identical to those without HF. Forty percent of patients with and without HF did not want to discuss their illness trajectory or deactivation of their ICD ever. In logistic regression analyses, we found that having had an ICD shock (OR, 2.05; CI, 1.64–2.56), having high levels of anxiety (OR, 1.41; CI, 1.04–1.92), and having high levels of ICD concerns (OR, 1.53; CI, 1.22–1.92) were the only significant predictors of having discussions with providers about EOL scenarios (P<0.001 for full model).Conclusions:HF was not a predictor of having an EOL conversation. Further research is needed to determine if attitudes related to not wanting to discuss EOL interfere with good quality of life and of death, or if shared decision-making should be encouraged in these individuals.

中文翻译：

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一项关于植入式心脏复律除颤器患者生命周期终期治疗方案的共同决策：一项全国队列研究。

背景：专家指南和共识声明的作者建议，在植入式心脏复律除颤器（ICD）植入之前和之后讨论寿命终止（EOL）的决策，并包括促进共同决策。这项研究的目的是描述ICD接受者在EOL时有关ICD的经历，态度和知识，并比较有或没有心力衰竭（HF）的ICD接受者的经验，态度和知识。我们进一步寻求确定与讨论EOL有关的因素。方法与结果：2012年，瑞典在瑞典对所有ICD接受者（n = 5355）进行了国家登记，完成了EOL问卷以及其他与ICD相关的措施2403 ICD收件人。在参与者中，有1275名（n = 53％）患有HF。他们在知识，经验，和态度领域几乎与没有心力衰竭者相同。有和没有心力衰竭的患者中有40％不想讨论他们的疾病轨迹或ICD失活。在Logistic回归分析中，我们发现患有ICD休克（OR，2.05； CI，1.64-2.56），高度焦虑（OR，1.41； CI，1.04-1.92），并且对ICD的关注程度很高（ OR，1.53； CI，1.22-1.92）是与提供商就EOL场景进行讨论的唯一重要预测指标（对于完整模型，P <0.001）。结论：HF不能预测是否进行EOL对话。需要进行进一步的研究以确定与不愿讨论EOL有关的态度是否会干扰良好的生活和死亡质量，或者是否应鼓励这些人的共同决策。