Sudden cardiac death in cardiomyopathies: acting upon “acceptable” risk in the personalized medicine era

Patients with cardiomyopathies are confronted with the risk of sudden cardiac death (SCD) throughout their lifetime. Despite the fact that SCD is relatively rare, prognostic stratification is an integral part of physician–patient discussion, with the goal of risk modification and prevention. The current approach is based on a concept of “acceptable risk.” However, there are intrinsic problems with an algorithm-based approach to risk management, magnified by the absence of robust evidence underlying clinical decision support tools, which can make high- versus low-risk classifications arbitrary. Strategies aimed at risk reduction range from selecting patients for an implantable cardioverter defibrillator (ICD) to disqualification from competitive sports. These clinical options, especially when implying the use of finite financial resources, are often delivered from the physician’s perspective citing decision-making algorithms. When the burden of intervention-related risks or financial costs is deemed higher than an “acceptable risk” of SCD, the patient’s perspective may not be appropriately considered. Designating a numeric threshold of “acceptable risk” has ethical implications. One could reasonably ask “acceptable to whom?” In an era when individual choice and autonomy are pillars of the physician–patient relationship, the subjective aspects of perceived risk should be acknowledged and be part of shared decision-making. This is particularly true when the lack of a strong scientific evidence base makes a dichotomous algorithm-driven approach suboptimal for unmitigated translation to clinical practice.