Adjusting to Life with an Implantable Defibrillator

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Implantable cardioverter-defibrillators (ICDs), can offer lifesaving treatment for the more than 10,000 Americans who receive one each month. But patients who receive ICDs need to be treated for more than their heart condition: Doctors need to pay close attention to their patients’ mental well-being, too, which can affect their outcome and quality of life.

That’s the message in a scientific statement from the American Heart Association (AHA) published in Circulation. Scientists and healthcare professionals evaluated evidence from rigorously reviewed studies to determine the effects of Implantable cardioverter-defibrillators on quality of life and psychological well-being.

As a result of this comprehensive overview, they found that significant psychological distress, chronic anxiety, and depression are common among people who have implantable cardioverter-defibrillators—and as many as 70 percent of those patients aren’t being treated.

The good news is that living with an implant doesn’t mean you have to live with distress.

The challenges of an ICD

An implantable cardioverter-defibrillator prevents sudden cardiac death by restoring normal heart rhythm in patients with heart failure or heart-muscle damage. Those patients have a very high risk of life-threatening abnormal heartbeats called ventricular arrhythmias.

The device constantly monitors the heart’s rhythm; when it detects a dangerous rhythm, it delivers an electrical shock that attempts to return the heartbeat to normal.

Most patients and their families adjust successfully to living with an implantable cardioverter-defibrillator, but some may need extra help adjusting emotionally. Doctors traditionally expect some cardiovascular disease patients to be anxious and depressed, but the feelings appear to be more widespread for ICD patients.

If you have an implantable cardioverter-defibrillator, you not only have to cope emotionally, but you also may be dealing with other challenges as well, such as:

Your underlying heart disease

The realization that the ICD won’t reverse your disease

The technological aspects and maintenance of your device

Other coexisting illnesses

You may also be fearful of an electrical shock from the implantable cardioverter-defibrillator, which can feel like a thump or strong kick to the chest. Shocks can trigger psychological distress—as can the anticipation of a shock or the inability to predict one.

The AHA’s evidence review pointed to several studies that suggest patients can tolerate up to five shocks without a significant difference in quality of life, but after about five shocks, quality of life declines. More comprehensive studies are needed to look for a link between psychosocial distress and ventricular arrhythmia that leads to implantable cardioverter-defibrillator shock.

Another study concluded that the experience of just one shock is associated with reduced physical function and mental well-being. Other studies showed an association between a risk of shock and depression and psychological distress.

The review authors report, however, that while some patients may find shock sensations frightening and overwhelming, others find them reassuring because they know the implantable cardioverter-defibrillator is working.

When you add these concerns to other common fears, such as battery failure, device recall, traveling, and general uncertainty about one’s health, it’s no wonder many implantable cardioverter-defibrillator patients report mild to severe distress.

The number of people estimated to suffer from post-implantation distress was cause enough for the AHA to urge healthcare professionals to educate patients better about ICDs and provide them with ongoing psychological support.

A review of the data

Here’s what the AHA researchers found after reviewing all the evidence:

Approximately 20 percent of implantable cardioverter-defibrillator patients suffer from clinically significant psychological distress, according to one recent systematic review spanning 45 studies and more than 5,000 patients.

Thirteen to 38 percent of implantable cardioverter-defibrillator patients suffer from anxiety. About 54 percent of patients who were anxious before implantation continued to suffer from chronic anxiety more than one year after receiving an ICD.

Ten to 46 percent of implantable cardioverter-defibrillator patients are depressed.

Twenty-one percent of implantable cardioverter-defibrillator patients have post-traumatic stress disorder (PTSD) symptoms, likely due to experiencing multiple shocks or surviving sudden cardiac arrest. One year after implantation, the amount dropped to about 13 percent. PTSD can directly affect patient outcomes: In one study, patients with the disorder had an increased risk of death.

The studies featured in the statement had mixed results when pinpointing common factors among emotionally distressed patients, and more research is needed in this area. However, the researchers identified some trends, suggesting that people who may experience a greater degree of distress include those who:

Have experienced more than five shocks

Have other chronic illnesses

Have a “type D” personality (negative, anxiety-prone)

Lack understanding of the device and the underlying disease

Are younger than 50 years old

Are female

Are single

Perceive a lack of social support

A brighter outlook

Fears and distress can be alleviated with help from your doctor and other specialists. To help patients cope with living with an implantable cardioverter-defibrillator, the AHA recommends that patients be adequately counseled before implantation as to what to expect from an ICD and, afterward, undergo routine screening and appropriate treatment for depression, anxiety and PTSD.

If you are considering, or already have, an implantable cardioverter-defibrillator, make sure you and your loved ones have a full understanding of:

The ICD’s benefits and limitations

Your disease’s course and your general prognosis

The impact the implantable cardioverter-defibrillator will have on your lifestyle, such as driving, travel and physical and sexual activity

Battery longevity and device replacement

What a shock means and what to expect

What to do in the case of a shock (called a shock plan)

How to handle a device recall

End-of-life care goals, including device deactivation

If you have an implantable cardioverter-defibrillator and find yourself losing interest or pleasure in doing things, and are feeling down, depressed or hopeless, consult your doctor. These are all potential signs of psychological distress. Consider relaxation therapy or cognitive behavioral therapy to help alleviate anxiety.

One study found that patients who participated in educational sessions and were taught skills to help them cope with anxiety had an improved ability to adjust to living with their device. You may also find it helpful to talk with someone who has personal experience living with an implantable cardioverter-defibrillator.

If you’re bothered by shocks, your doctor may be able to reduce or eliminate them by prescribing antiarrhythmic drugs. Your implantable cardioverter-defibrillator settings may also need to be reprogrammed.

Be sure to contact your doctor every time you experience a shock. If a shock is accompanied by chest pain, shortness of breath or a rapid heartbeat—or if you have a cluster of shocks—go to an emergency room.

Finally, regular physical activity or cardiac rehabilitation after implantation can also help. Studies show that both appear to improve quality of life and reduce anxiety among ICD patients.

Read more about treatments for heart arrhythmias.