Magical thinking around end of life: An editorial on ‘Implantable Cardioverter Defibrillator deactivation discussions: Reality vs. recommendations’

Patients die. We do not want to talk about it, but they do – despite our best efforts. A few years ago, I presented at the American Heart Association’s Quality of Care and Outcomes Research meeting on hospice outcomes for heart failure patients. Besides being one of the only nurse presenters, I noticed that I was one of the only people to discuss end of life outcomes. The first reaction of most attendees was ‘what is a study on hospice doing at a quality of care conference?’ Amidst a group of highly rational, outcomes-focused researchers and clinicians, the prevailing attitude was that if we do not discuss mortality, it does not really happen. So I was not surprised to read Hill and team’s article ‘Implantable Cardioverter Defibrillator (ICD) deactivation discussions: Reality versus recommendations’ and find that the guidelines on discussing goals of care and deactivation prior to ICD implantation are not being carried out.1 Given that ICDs are placed to counteract life-threatening cardiac arrhythmias, cardiology clinicians have been slow to acknowledge the need for discussions around deactivation and patient’s goals of care in the event of worsening prognosis prior to implantation. It is key to remember that cardiac disease is rarely present without co-morbidities and many patients experience a worsening of their condition unrelated to cardiac arrhythmias. Hill and team noted a recent malignancy diagnosis in almost a third of their patients and two-thirds died of causes other than sudden cardiac arrest. Furthermore, 84% of Hill’s sample had a diagnosis of heart failure, New York Heart Association class II or higher.1 Despite advances in treatment, heart failure continues to have a mortality rate of 80% within 5 years of diagnosis.2 These patients are thus prime candidates for discussions around deactivation and goals of care. Despite the high-risk nature of their illness, Hill and colleagues found that end of life discussions only took place in 52% of their patients and the topic of defibrillator deactivation was only discussed with 39%. Yet their entire sample was deceased. If mortality is a reality, why do we avoid having these conversations? Clinicians have routinely cited a desire to avoid taking away patients’ hope or causing distress as a reason to avoid these conversations. Study after study has revealed that, to the contrary, patients are willing to have, and want to have, these conversations.3 In Hill and colleagues’ sample, 94% of patients (all but one) with whom deactivation was discussed chose to deactivate – suggesting that others might have chosen to deactivate had they known it was an option. As a clinician, I have often thought that it is our own fear, anxiety and even grief that holds us back from these conversations. Fears that we may ‘make it real’ if we talk about it or that talking about end of life means we have given up or have somehow failed are examples of the ‘magical thinking’ that I often see in families and partners who are struggling to come to terms with the grief and fear of losing their loved one. Learning to grieve and to acknowledge loss is one of the hardest things a clinician can do. Our training has often prepared us for roles and identities as healers and fixers and left us unprepared for the unfixable, for mortality. Kim and Hwang’s survey of nurses’ attitudes and knowledge around palliative care illustrates this point: among nurses with an average of 10 years’ experience working primarily in critical and/or cardiac care, 30% were judged unprepared to offer palliative care or provide appropriate comfort measures to dying patients.4 Being comfortable enough to have an end of life discussion with a patient requires accepting the limitations of our humanity. It requires that we shift our paradigm a little and recognize that that healing means more than prolongation of life; it means that we help our patients live fully for as long as they have to live, that we honor and respect their wishes and that we enable them to die with as much comfort and dignity as possible. When we act as if the guidelines around end of life and deactivation discussions are mere suggestions rather than important goals, we fail to acknowledge our patients’ right to autonomy and informed consent and may cause them to suffer needlessly at the end of life. Discussing deactivation with a patient is difficult and requires skill and empathy. The ability to hold these conversations is not innate, but requires training and practice. The literature suggests that simulation and role play are more effective than simple knowledge acquisition.5 Shifting the paradigm of healthcare professionals will require that training programs incorporate training on communication in the setting of serious illness and that experienced healthcare professionals model these behaviors for the trainees they mentor. A tool to assist healthcare providers specifically with discussions around ICD deactivation has been developed and tested in Swedish and testing of an English language translation is ongoing.6 Despite our preconceptions about the challenges of these discussions, the reality is that we do not know patient preferences until we explore them. We need to talk to patients about their values, preferences and choices because it turns out that we are not that good at predicting what they would want. Hill and colleagues’ finding that patients who had endured a shock were more likely to keep their ICDs active at death is contrary to intuition. But it also suggests a real possibility: that getting a shock is not as bad as we think it is. Maybe the real lesson for us is that the only way we will know how painful it is to engage in these discussions is to actually have them – maybe the ‘shock’ will not be so bad after all.