A Device Nobody Mentioned Turning Off: ICD Deactivation Near the End of Life
His family has made every decision comfort-focused care usually requires. Nobody had yet mentioned the device in his chest that could still shock him on the way out.
F.W., a 79-year-old man, spent over thirty years as a merchant marine captain, work his children describe as having shaped nearly everything about how he approached the rest of his life — methodical, calm under pressure, uncomfortable asking for help. He has end-stage heart failure with reduced ejection fraction, an ICD placed nine years ago for primary prevention after a large anterior MI, and has been declining steadily over the past two months despite maximized guideline-directed therapy. His family met with the palliative care team last week and, after a long conversation, transitioned his goals of care to comfort-focused, declining further hospitalization, escalating heart failure therapy, or resuscitation in the event of cardiac arrest.
What that conversation didn't cover, and what his admitting team is only now raising, is his ICD. A shock from an ICD is genuinely painful, and a device still active and functioning at the moment a dying patient's heart begins the arrhythmia that would otherwise be a peaceful death can instead deliver one or more defibrillation shocks in his final hours — an outcome squarely at odds with the comfort-focused plan his family already chose, but one they were never specifically asked about, because ICD deactivation is a distinct decision from the DNR order and the treatment-limitation choices that usually anchor a goals-of-care conversation. Professional consensus, dating to the 2010 Heart Rhythm Society statement on cardiac devices near the end of life, treats device deactivation as ethically and legally equivalent to withholding or withdrawing any other life-sustaining treatment, grounded in the same patient-autonomy principle — but that equivalence only protects a patient whose family actually knows to ask, or is asked directly.
At the goals-of-care follow-up
This needs to be raised directly and soon, not left implicit in the DNR conversation. A DNR addresses resuscitation after cardiac arrest; it doesn't address whether his ICD will still deliver a shock in the moments before that arrest completes. Those are two different devices doing two different things, and families very reasonably don't know that unless someone tells them.
Agreed completely, and I want to name the ethical framing clearly when we talk to the family: deactivating the shock function is not a form of euthanasia or hastening death — it's withdrawing a specific therapy, the same category of decision as declining a ventilator or a feeding tube, and the professional consensus on this has been settled since the 2010 Heart Rhythm Society statement.
I'd frame it to the family as completing the plan they've already made, not as a new, harder decision layered on top of it — they've already chosen comfort over intervention everywhere else; this is the same choice applied to a device they simply hadn't been asked about yet. Deactivation of shock therapy only, not pacing if he's pacemaker-dependent. That has to be an in-person reprogramming — remote monitoring can read a device but cannot alter its settings — so I'll have the manufacturer's representative here with a programmer today rather than defer it, and a magnet taped over the device in the meantime, which suspends shock therapy for as long as it stays in place.
ICD shock therapy permanently deactivated by bedside reprogramming the same day, with a magnet used to suspend shocks until the programmer arrived, after a direct conversation with the family explaining the distinction from the DNR order already in place. Pacing function continued pending confirmation of his pacing dependence.
The family's response, worth recording rather than assuming:
They expressed relief rather than distress once the decision was framed as completing a plan they'd already made, and specifically noted they hadn't realized the device was a separate question from the DNR — underscoring why this conversation needs to be initiated proactively by the care team rather than left for a family to think to raise on their own.