Should You Turn Off a Pacemaker or Defibrillator (ICD) on Hospice?

Turning off the shocking function of an implantable cardioverter-defibrillator (ICD) is a common, reasonable choice on hospice, because its high-energy shocks can be strong or painful and may fire in the last minutes of life without changing the outcome. A pacemaker, which uses low-energy pulses and does not shock, is often left on. Either way, it is your choice (or your healthcare agent's, if you can't decide): hospice does not require you to turn off either device, and no one should change it without consent.

Quick answers

• Should an ICD be turned off on hospice? Many patients and families choose to turn off the shocks to avoid painful jolts near death. It is a choice, not a rule.
• Should a pacemaker be turned off? Usually there is no comfort reason to, because pacing doesn't shock. You do have the right to ask for it to be turned off if it is no longer helping you.
• Will turning off the ICD make my loved one die? No. It stops the shocks; the illness follows its own course, and any pacing can stay on.
• Do you have to turn it off to get hospice? No. Hospices admit patients with active ICDs.
• Who does it? A trained clinician or device technician reprograms the device from outside the body. No surgery is needed.
• Who decides if the patient can't? Their healthcare agent or the surrogate allowed under state law, based on what the patient would want.

Pacemaker vs. ICD: they are not the same

According to the National Heart, Lung, and Blood Institute, with a transvenous ICD or a CRT-D, the shock function can be turned off without surgery while the pacing function keeps working.

Why families turn off the ICD's shocks

An ICD is built to interrupt sudden death by shocking the heart. At the end of life, as the body is shutting down, the heart's rhythm can become unstable and the device may fire, sometimes in the final minutes, without changing the outcome. In one study of 100 people with ICDs who died, family members reported that 8 received a shock in the minutes before death, and clinicians had discussed turning the device off in only 27 of the 100 cases. In a national survey of hospices, 97% admitted patients with ICDs and 58% reported that a patient had been shocked in the past year. Turning off the shock function prevents that. It does not cause death; it stops the device from intervening against a natural dying process, which fits the goals of comfort care.

Should a pacemaker be turned off on hospice?

Usually it is left alone, but you have the right to ask. A pacemaker's pulses are low-energy and don't shock, so it is not a source of painful jolts. The NHLBI notes that patients have the right to request that a pacemaker be turned off or removed if it is no longer beneficial, for example when seriously ill or near the end of life, and that a doctor may first suggest an ethics consultation so you understand the risks. What happens after a pacemaker is turned off depends on how much the heart relies on it, so ask the cardiologist or hospice physician what to expect for your loved one before deciding.

What turning off the shocks does and does not do

• It does not cause death. It stops the device from shocking the heart; the underlying illness still follows its natural course.
• It does not turn off pacing. On a device that also paces, pacing can stay on.
• It can be undone. The setting can be reprogrammed, though families rarely reverse it once the goal is comfort.
• It prevents a specific harm: shocks in the final hours or minutes that would not extend meaningful life.

Who decides, and is it "giving up"?

If the patient can make their own decisions, it is their choice. If they can't, their healthcare agent or the surrogate allowed by state law decides, based on what the patient would have wanted; see hospice and power of attorney. Choosing to turn off the shocks is not giving up. The device was put in to prevent sudden cardiac death in someone expected to live; when a person is dying of a terminal illness, the shocks no longer extend meaningful life and instead add pain. Equally, no one should turn off a device against the patient's wishes. The NHLBI suggests people with an ICD include their wishes about deactivation in their advance directives.

Because heart devices are common in advanced cardiac disease, this question comes up often in hospice care for congestive heart failure. Alongside the device decision, the team treats breathlessness, fluid buildup, fatigue, and anxiety; see common medications used in end-of-life care.

How to arrange it

Raise the device at admission rather than in a crisis. The hospice physician will need to know exactly which device is implanted — a pacemaker, an ICD, or a combination unit. The wallet card you received with the device, or the cardiology office that follows it, can confirm this. If you choose to turn off the shocks, the hospice arranges for a trained clinician or a technician from the device company or cardiology service to reprogram it, and the decision is recorded in the plan of care. Doing this calmly, in advance, avoids the worst case: a dying patient receiving shocks while the family scrambles after hours to find someone who can turn the device off.

Frequently asked questions

Does turning off the ICD hurt?

No. It is done by reprogramming the device from outside the body. No surgery is needed.

Will my loved one's heart stop the moment the ICD is turned off?

No. Turning off the shocks does not stop the heart or cause immediate death. It only prevents the device from delivering shocks; the illness follows its natural course. If the device also paces, that can stay on.

Do we have to turn off the ICD to start hospice?

No. Hospices admit patients with working ICDs, and the decision stays with the patient or their healthcare agent. It is worth deciding early, though, because a shock can happen at any time.

What happens if we do nothing and the ICD stays on?

The ICD may deliver one or more shocks as the heart's rhythm becomes unstable during dying, without changing the outcome. High-energy shocks last less than a second but can be strong or painful, and many families find them distressing to witness. If your loved one is shocked before the device is turned off, call the hospice's 24/7 line first.

Does turning off the ICD cost anything?

Under the Medicare hospice benefit, your only routine costs are a copayment of up to $5 per prescription for pain and symptom drugs and 5% of the Medicare-approved amount for inpatient respite care. Ask the hospice who will do the reprogramming and whether any charge applies before the visit.

Your practical next step

Tell the hospice team exactly which device is implanted, ask the hospice physician to explain your options, and arrange deactivation if you choose it. Put the decision in writing in your advance directives so every clinician knows your wishes, and keep the hospice's 24/7 number handy. If you are still choosing a hospice, ask whether they have a plan for patients with heart devices, and compare hospices near you.