Original research: deactivation of ICDs at the end of life: a systematic review of clinical practices and provider and patient attitudes.

BACKGROUND: The implantable cardioverter-defibrillator (ICD) has become a standard treatment for people at risk for life-threatening cardiac arrhythmias. To restore normal heart rhythm, the ICD delivers a high-energy, painful electrical shock. Because the device is so effective in treating sudden cardiac arrest, people with ICDs are more likely to die from other causes. But their deaths can be needlessly painful if the ICD delivers shocks during the active phase of dying. Although device deactivation is an option, no formal practice protocols address this, and advance planning discussions don't often include potential ICD deactivation.
OBJECTIVE: The purpose of this systematic review was twofold: to identify factors that delay ICD deactivation discussions and to identify ways to promote timely deactivation discussions and thus foster better patient-centered, end-of-life care for people with ICDs.
METHODS: Using relevant search terms, a literature search for articles on the topics of interest was performed in multiple databases. The search was limited to articles published in English in peer-reviewed journals between January 1, 1999, and October 31, 2010. Reference lists of applicable articles were also examined for any additional relevant studies. After applying inclusion and exclusion criteria, 14 studies investigating the topics of interest were identified and are included in this review.
FINDINGS: Providers' knowledge deficits about ICD functions and attitudes about ICD deactivation in terminally ill patients can adversely affect the timing of deactivation discussions. Providers' reluctance to discuss deactivation may stem in part from personal discomfort and lack of experience with this option. ICDs may be viewed differently from other life-sustaining measures. Providers may also feel ill prepared to initiate a discussion about deactivation with patients; some might prefer expert guidance or that others initiate such discussion. There's evidence that ICD deactivation is most often performed by an industry representative, and that continuity of care is lost. Although there's been scant research on patient attitudes about ICD deactivation, it appears that patients lack sufficient knowledge of ICD function to make informed decisions about deactivation. A complex psychological relationship may exist between patients and their ICDs. Deactivation discussions occur more frequently when a formal institutional policy exists. ICD deactivation in terminally ill patients is more likely when deactivation is discussed as part of an interdisciplinary approach to care.
CONCLUSIONS: Both patients and providers need better knowledge of ICD functions and options at the end of life in order to foster more timely discussion of device deactivation. More research is needed, in particular regarding patient attitudes toward ICD deactivation. Formal ICD deactivation policies should be developed to guide providers. A comprehensive and interdisciplinary approach to deactivation discussions should be considered. KEYWORDS: cardiac arrhythmia, cardiac implantable electronic device, deactivation, defibrillation, end-of-life care, heart failure, hospice care, implantable cardioverter-defibrillator, palliative care, ventricular tachyarrhythmia.