The number of people with implantable cardioverter defibrillators (ICDs) has increased. Consequently more people approaching the end of their life have an ICD in situ.
Sensitive and timely conversations enable a planned ICD deactivation to take place in the majority of people approaching the end of their life. However, in a small number of cases, our multi-professional team have not been able to reach an agreed decision to deactivate the ICD with the patients/their family.
In these situations, patients and families placed different weights to the clinical team on the benefits and harms of leaving the ICD active versus deactivated, often because of strong preferences or intrinsic values related to pursuing treatments.
National guidance exists about factors to consider when making decision about deactivation of an ICD at end-of-life. However, staff experienced conflict between their wish to deliver medically appropriate but personalised care.
The teams were fluently able to discuss the harms that can occur as a result of leaving an ICD active including the pain from shocks and distress witnessing this. However, further consideration of real-time harms that were occurring as a result of deactivation discussions was crucial to reaching a shared decision to leave these ICDs active, unless preferences changed or the ICD fired causing distress.
The particular harms included: deactivation becoming the focus of encounters rather than other issues such as symptoms (often patient led); loss of trust in patient-clinician relationships because of (perceived) failure to recognise the importance of the individuals values/perspective; time taken for further discussions in context of time as a scarce resource/precious in end of life situations.
Our experiences and practice evolve with each case, but being mindful of current versus potential future harms, and articulating these, has been helpful in reaching shared agreed decisions to leave some ICDs active at end-of-life.
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