Passing the torch, keeping the trauma: how patients and kin experience transfers of responsibilities and information after ICD implantation

Implantable Cardioverter Defibrillators (ICDs) are sophisticated devices, that monitor the recipient’s heart while wielding algorithms to detect and react to irregular rhythms and cardiac arrests with corrective shocks. Data reports are transmitted to monitoring clinics regularly and in case of dangerous activity. Tucked away in a subcutaneous chest pocket, with leads reaching the innermost chambers of the heart, this little machine promises to extend and save the lives of people with various cardiac conditions. Receiving an ICD is a simple operation, done with local anaesthesia and barring any complications, patients can leave the hospital within 24 hours. Most patients receiving an ICD do so after surviving a cardiac arrest.

As such, this simple procedure often happens in a complex affective space, characterised by the trauma of a near-death experience and dissonance between the contrasting memory loss for the cardiac arrest survivor and the next of kin’s vivid remembrance. In this presentation, we introduce preliminary results from an observational study at an ICD clinic and four qualitative interviews with two individual ICD patients and with two ICD patients and their respective spouses. The main objective of this study was to gain an understanding of the affective spaces surrounding ICD patients and their next of kin immediately after an ICD implantation, how patients and kin navigate, experience and interact with informational structures in healthcare and finally the role played by algorithmic agents such as the ICD. A preliminary analysis of the empirical data suggests that the monitoring and algorithmic agency of ICD devices redistribute responsibilities and response-abilities and change the structure and transfer of information amongst clinicians, patients and kin. The ICD patients themselves become nodes in an informational infrastructure, transmitting data they cannot themselves access or read. The patients and their kin only get insight into this data during ICD consultations, where they are also faced with their cyborg reality, as their primary interface with the hospital becomes a technician rather than a doctor. Upon implantation of the ICD a transfer of responsibility happens and how this transfer is experienced depends on each preceding history. For the wife who resuscitated her husband, this transfer is difficult to accept and requires time and repetition for the new status quo to settle in: “if he has another heart attack, the ICD will take over, you do not need to save him again”. For the wife who did not witness her husband’s cardiac arrest, this transfer of responsibility is differently felt, as the responsibility of resuscitating him moves from one “unknown” agent to another. Her worries are not centred on whether she can save him again, but rather if it happens again. This empirical study is part of a larger project which aims to understand the affective spaces and collectives of care of ICD patients and their next of kin at different times in their patient journey and how to better and more carefully design for it.