The implantable cardioverter-defibrillator: unseen but should not be forgotten

This Patient Perspective 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 perspective brings together the thoughts of a patient and a family member on the sensitive topic of deactivation of an implantable cardioverter-defibrillator (ICD) and the appropriate moment to discuss it in a patient’s journey. Discussing ICD deactivation has been included within international guidelines for nearly a decade.1 However, recent evidence indicates that, for many patients, the topic is infrequently discussed or left until death is imminent.2 Certainly the ‘life-saving’ properties of the device cannot be underestimated. However, the question of when a discussion on device deactivation should be initiated remains uncertain. What follows is one patient’s thoughts on this: I had never really thought about it but when asked about ICD deactivation a lot of questions did start to swirl around in my head. My ICD was implanted in June 2020 and it all happened so fast I did not even have much time to take it all in, never mind consider deactivation. This is not a conversation I have officially had with healthcare professionals and to be honest I don’t remember it being a large part of any conversation when I had my implant. Did I just not hear it? Was I too busy trying to get my head around the other information and the implant? I am not sure. There was a lot happening. On reflection I don’t think I could even have considered talking about it at that stage, but now the question arises as to when should I have the conversation? How do I have the conversation and who with? I do think it should be part of everyone’s journey that has an ICD. At some stage it needs to be raised with patients, as not all patients will think about it. For me I feel like now is a better time to have this information to review and make decisions with the family present, rather than leaving it until a critical moment. I feel this would take the pressure off everyone when emotions are at a peak. The thoughts of a family member and informal caregiver: For caregivers, when their loved one reaches a terminal phase, the discussion and the ultimate need for a decision regarding deactivation, can be extremely difficult. Navigating the path of being a healthcare professional to a family member who is a patient with an ICD is even more difficult, and often based on personal experience and knowledge. There are four ways of understanding this role: carer, advocate, supervisor and informed bystander.3 On reflection, the role I was placed in was that of advocate. The issues with my Mum’s heart began in March 2021, with an ICD fitted a few weeks later after limited response to medication. In May 2022 Mum started on both long term and ambulatory oxygen therapy, and by September 2022 she had severe lower body oedema, and very limited mobility. Her ICD fired in the middle of the night which led to an emergency admission to the local Coronary Care Unit (CCU). I had come to realise Mum was nearing the end of her life as the different treatment options were not making Mum feel any better. Mum was admitted to hospital with cardiac and respiratory failure, and discussions around reaching the ceiling of treatment (not for intensive care level of treatment, not for escalation of treatment, not for ventilation) and therefore resuscitation decisions were made on admission, without any family being present. No-one called me, I could have been there earlier, even before those conversations happened, to prepare Mum for what was to come. Of course, for Mum, this was all overwhelming and she informed the staff that she wanted me (her daughter) to be involved in any discussions. The doctor, who had seen Mum earlier in the day, was called and came to speak with me. Naturally, Mum had told them about my nursing background. So when the doctor spoke to me on my own, she spoke about future plans of care. I approached the subject of deactivation of her ICD, asking questions such as—Was this something she had considered? Was it appropriate? What should happen next? The doctor seemed relieved that I had brought the subject up and then began to talk more openly about this option. In fact, deactivation was not being considered for Mum. This left me confused given that a do-not-resuscitate order was in place and the palliative care team had been brought in for symptom management. In the end, Mum’s ICD was not deactivated and she died peacefully in her sleep 16 days later. Discussing and making a decision on whether or not to deactivate an ICD remains challenging for both patients, family members, and healthcare professionals. There is an urgent need to provide support and offer clear information and guidance at a time when there is often no second opportunities to do what is right for the patient and family. No funding.