Purpose: Decision making for patients eligible for Implantable Cardioverter-Defibrillators (ICDs) is complicated. In addition to the potential reduction in mortality, ICDs come with a host of potential risks including a lower quality of life if shocked, more hospitalizations, and potential suffering at the end of life. Further, sudden cardiac death can also be framed as “dying in your sleep,” and perhaps some patients do not wish to forgo this option of a quick demise. The objective of this study was to explore two ways of measuring preferences related to dying of sudden death or progressive illness.
Methods: We conducted a mailed survey of 412 patients with ICDs from a managed care organization regarding their experiences in ICD decision making. The survey explored the value trade-off between dying of sudden cardiac death and dying of a progressive illness in two ways: a) by separately measuring the values using ratings from 1-10; and b) by measuring the values together using a visual analog scale (VAS).
Results: A total of 295 patients with ICDs responded to this survey (response rate 72%, 295 out of 412). When asked separately, both the value of dying quickly and living as long as possible were rated highly (8.0 and 7.6 out of 9, respectively). When asked together on a VAS, the majority of patients preferred to die quickly (Figure). Patients preferring to “die quickly” on the VAS also rated the corresponding single item (8.6 vs. 7.0, P<0.001). Likewise, patients preferring to “live as long as possible” on the VAS rated the corresponding single item more highly (8.1 vs. 7.1, p=0.001). Further examination revealed that 61% of patients preferring to die quickly were unaware that it was possible to deactivate their ICD.
Conclusions: When asked as individual items, people prefer to avoid all modes of death. When forced to choose on a visual analog scale, respondents were able to make this tradeoff in a way that reflected their scores on the single items, suggesting that people do indeed have a preferred mode of dying. Finally, the patients who preferred to die quickly and who were unaware that their ICD could be deactivated raised concerns about value/treatment discordance.
See more of: The 34th Annual Meeting of the Society for Medical Decision Making