Implantable cardioverter defibrillator deactivation discussions: insights from healthcare professionals to enhance clinical practice and future research

This invited commentary refers to ‘An insight into healthcare professionals’ perspectives on discussing implantable cardioverter defibrillator deactivation’ by L. Hill et al., https://doi.org/10.1093/eurjcn/zvae032. The decision to receive an implantable cardioverter defibrillator (ICD) can be profoundly challenging for patients, requiring complex decisions about their ongoing care with the device.1 Among these decisions is whether to deactivate the ICD during end-of-life care to avoid painful and traumatic shocks that potentially prevent the patient from dying peacefully.2 Given this risk, clinical guidelines and position statements recommend discussing device deactivation with patients.3–5 However, evidence from a systematic review suggests that the implementation of these recommendations in clinical practice remains inconsistent.6 The inconsistency in implementing discussions about ICD deactivation may be due to their complexity for healthcare professionals, who must engage not only with patients and various stakeholders but also navigate cultural, religious, and legal perspectives on death and dying.6–8 These discussions are challenging for all parties involved, including patients, their families, and healthcare professionals,6,7 and this may be exacerbated by limited understandings of devices and their potential impact on end-of-life care.6,7,9 Additionally, surrogate decision-makers often make deactivation decisions on the patient’s behalf, possibly without clear knowledge of patient preferences.10 Although research in this area is expanding, it currently lacks clarity on who should lead these discussions, how they should be conducted, and the optimal timing for these conversations.8 Given the complexity of discussions around ICD deactivation and the limitations of current research, there is a pressing need for qualitative research involving multiple stakeholders to explore this topic and the use of co-design principles to shape research outcomes. Addressing this need, Hill et al.11 conducted a qualitative study to understand healthcare professionals’ perspectives on ICD deactivation. They further employed co-design principles to engage with multiple stakeholders—including an ICD patient, a family member, researchers, healthcare professionals, and support staff—to identify priorities for clinical practice and future research. Their work represents a substantial contribution to advancing the care of patients living with an ICD. Hill et al.11 found through their interviews with healthcare professionals that discussions on ICD deactivation are complex and personally challenging, highlighting the need for compassion and to consider family involvement and cultural sensitivity. Healthcare professionals agreed that these discussions were important and should ideally begin before or soon after ICD implantation. Hill et al.11 subsequently presented these findings at a co-design workshop where four priorities for practice and future research were identified: (1) ensuring patients receive current information about their ICD before or soon after implantation; (2) creating and using tools to facilitate decision-making discussions; (3) incorporating patient preferences and, if desired, family participation in discussions; and (4) investigating how digital technologies can deliver information to patients and their families. The four priorities outlined by Hill et al.11 present substantial opportunities for delivering real-world benefits to patients and healthcare professionals. For example, these closely related priorities can be incorporated when developing digital healthcare interventions. There has been little research on how to support ICD deactivation discussions, but it is evident that effective interventions must be multifaceted, involving healthcare professionals, patients, families, and broader healthcare systems.8 Heeding the priorities put forth by Hill et al.,11 digital health interventions that ensure the timely delivery of current ICD information, offer tools to facilitate discussions, and are sensitive to patient preferences demonstrate considerable potential for improving patient care. Current digital health interventions have primarily focused on supporting ICD patients’ post-implantation care. Randomized controlled trials have suggested that these interventions have had minimal effect on patient quality of life and psychological outcomes.12–15 However, digital interventions warrant further exploration because they require limited resources, are adaptable to patient needs, and similar interventions have proved effective in other clinical populations and contexts.14,16 Additionally, studies examining social media usage by patients with cardiac implantable electronic devices indicate that social media can offer a means for patients to share information and provide peer support, and that caregivers and surrogate decision-makers discuss ICD deactivation within online communities.17 Digital interventions offer unique opportunities as they can educate patients and facilitate collaborative patient-centred discussions. These interventions could inform patients about their ICD in engaging ways and include questionnaires to aid clinical discussions and ascertain patient preferences. In this context, shared decision-making tools, which aim to integrate each patient’s values and preferences into their care, have shown considerable promise and are increasingly being incorporated into the management of patients with an ICD.18 The use of electronic questionnaires to support shared decision-making across various populations has demonstrated potential in multiple studies to enhance patient management and care.16 Implantable cardioverter defibrillator deactivation discussions continue to pose challenges for patients and clinicians, highlighting the need for further development of evidence-based practices in this sensitive area of care.6–8 Hill et al.11 are to be commended for incorporating the views of varying healthcare professionals, a patient and family member into their research, and providing valuable insight that sheds light on the intricacies of initiating and managing these discussions. Their research emphasizes the importance of familial considerations, respecting cultural nuances, and integrating patient education and preferences from the outset of patients’ ICD journeys. Future research would benefit from further input from patients and their families, with existing research demonstrating the benefits of such input for end-of-life teaching, research and care.19 In addition, the multidisciplinary team, and the roles of each member, including those of psychologists, require further examination. As this field evolves, research and digital health interventions informed by Hill et al.s’11 priorities will play an important role in how ICD deactivation discussions are approached, ensuring that they are more informed, patient-centred, and effective in meeting the needs of patients with an ICD. The first author is supported by an Australian Government Research Training Program (RTP) Scholarship and a George Fraser Supplementary Scholarship from the University of Adelaide. 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