The potential benefits of implantable cardioverter defibrillators (ICDs) are obvious but patients often overlook their risks. A US study in JAMA Internal Medicine involving 41 patients and 11 cardiologists investigated patient–physician communications at the time of decision to implant – by use of patient focus groups and standardised patient interviews. No physician discussed the prevalence of inappropriate shocks, or death despite ICD shock, few discussed any long-term risks, and most patients vastly overestimated the likely benefits. An accompanying Commentary concludes the quality of physician–patient interactions needs to be measured and true shared decision-making to be rewarded.
This conclusion can be cascaded down to the rest of healthcare. There cannot be valid consent unless patients properly and fully understand the risks of any procedure – the information they receive has to be honest (and that includes not lying by default) and delivered in a way that is understandable, plus the patient’s understanding needs to be properly checked. The shameful saga of breast screening in the UK has been a perfect example of paternalism, with people who were not even patients kept in ignorance of harms and risks of those harms, many of whom went on to become patients unnecessarily – and even now, while screening information is being re-written, still do so.