Background: The implantable cardioverter defibrillator (ICD) deliver life saving therapy in patients who have survived sudden cardiac death (SCD) or are at such risk due to underlying heart condition. In spite of the life saving capacity of the ICD, eventually underlying heart disease, or a non-cardiac disease, will end the life of the patient. Around 30 % of all patients will experience one or multiple ICD shocks in the final weeks of their lives, adding to stress and anxiety in patients and their family.

Aim: To describe ICD patients´ conceptions on end-of-life (EOL) issues, with special reference to deactivation or non replacement of the ICD.

Material and Method: Data was collected during 2011 at five Swedish hospitals. The population consisted of 37 ICD recipients with the exclusion of those nearing EOL  or with terminal illness. The method was a manifest content analysis approach, based on interviews.

Results: The ICD recipients described how they lived with an uncertain illness trajectory, but had not reflected on possible course of events in the future. Lack of deeper understanding of the true lifesaving capacity during the illness trajectory was revealed. Most participants had an overall positive view and focused on the ICD as a way to avoid SCD and had not considered death by other causes. Discussions with the healthcare providers focusing on EOL issues had very seldom taken place. The participants had not reflected on EOL issues earlier; they considered the ICD as something that always should be there as a lifesaver. They wanted to postpone the discussion and decision about deactivation until the very end. When patients were asked to anticipate their preferences if they should be terminally ill, the majority stated that they would not choose to deactivate the ICD, even if they received multiple shocks. This was true for both patients with heart failure who received the ICD for primary prevention, as well as for those who already had survived a SCD.

Implication: Despite comprehensive guidelines relating to the issue of ICD and deactivation in EOL, complexities with implementation of the guidelines continue to be raised in clinical practice. Heart Rhythm Society recommend healthcare providers to stepwise discuss the question of deactivation of the ICD during the illness trajectory, the ultimate motivation being the risk for multiple shocks preventing a “peaceful” death. However, our results showed that this is not always the patient’s desire, and in clinical practice these discussions can be both challenging and raise an ethical dilemma. The postponement or total avoidance of the EOL discussion may ultimately lead to problems when death is imminent.

Conclusion: Deactivation or not replacing the ICD in terminal illness is seldom brought up for discussion with the healthcare providers. ICD recipients lack deeper understanding of the true life saving capacity of the device during their illness trajectory and tend not to think about EOL matters. Some patients choose not to make a decision at all; others want to prolong life at any price and others, still, face finality and reflect on existential issues. Many ICD recipients reach their final stage of disease unaware of the fact that they have a choice.