I could make out the rounded corners of the implanted device stretching through the thin white skin of Ann’s chest. I was shocked to see such a young, healthy-looking woman among our Heart To Heart survivors’ support group that night (we were vastly outnumbered by old men and their wives). Ann (not her real name) was just 24 years old; her younger sister had recently died of sudden cardiac arrest due to a terrifying heart condition called Long QT Syndrome – a heart arrhythmia usually affecting otherwise healthy teenagers and young adults – whose first symptom is sudden loss of consciousness and, in far too many cases, death.
Because there is often a family connection, all of the surviving siblings in Ann’s family had to be tested to see if they too shared this deadly diagnosis. Her brother was fine, but Ann tested positive for Long QT, and so was immediately implanted with a life-saving cardiac device called an ICD.
Until that evening when I first met Ann, I’d never even heard of ICDs. As described in the journal Circulation:
“An Implantable Cardioverter Defibrillator (ICD) is an implantable biomedical device that monitors and treats abnormal heartbeats when they occur.
“The device is attached to the heart with 1-3 leads that carry information from the heart to the ICD, allowing it to record heart function, selectively provide pacing if the heart beats too fast or too slowly, and/or administer high-energy shocks if more serious heart rhythms are detected.
“The primary purpose of the ICD is to prevent premature sudden cardiac death. However, the device can also provide a sense of security, which allows resumption of normal life activities.”
Not every person who has an ICD implanted has a Long QT diagnosis. For example, any patient at risk of developing sudden cardiac arrest due to heart arrhythmias such as ventricular tachycardia, Brugada Syndrome or fibrillation may be a candidate for an ICD.
You might imagine that it would feel reassuring to have what’s essentially a built-in cardiac crash cart implanted right inside your chest to save your life in case of sudden cardiac arrest.
But research suggests considerable psychological distress can occur in both ICD patients and their partners.
For example, a University of Florida study(1) published in the Journal of Cardiopulmonary Rehabilitation and Prevention looked at levels of death anxiety, shock anxiety, general anxiety and marital adjustment of the participating couples when one of the pair had an ICD implanted. Researchers found that anxiety may actually be more common in ICD partners than in ICD patients themselves.
Partners were particularly worried about ICD shocks, even more so than the patients. Interestingly, female ICD patients reported more anxiety related to both dying and being shocked than male patients did – perhaps because women actually did receive more shocks from their ICDs than men did, despite equivalent levels of medical severity.
Another study(2) reported in the journal Circulation looked at important lifestyle adjustments that must be made to promote health and wellbeing for both ICD patient and spouse:
“Such adjustments may take time and a bit of work; most people take about three months to adjust to such major life changes. A patient’s adjustment often mirrors the partner’s adjustment, so effective coping can improve both of your lives.
“Patient acceptance refers to how well an individual adapts to the ICD and accepts its pros and cons. Patients and partners may differ on how well they accept the device.
“The hope for ICD patients is that they re-engage with the confidence of having ‘an emergency room in the chest’, yet some patients experience difficulty and avoid activities they previously enjoyed, such as going places or interacting with other people.
“In fact, both ICD recipients and partners may experience distress caused by fear of shock, body image concerns, or fear that the device will malfunction or be recalled.”
Some partners report feeling helpless as they anticipate their loved one receiving an ICD shock. Other partners fear shocks happening in public, and this fear can lead to avoiding social situations, even though research indicates that shocks cannot be induced by participating in normal activities of daily living like exercising or visiting with friends, nor can they be avoided by cancelling these activities.
Sometimes, in an attempt to protect the patient, a partner may inadvertently prevent the patient from returning to a full lifestyle. And with the focus of concern on the patient and the patient’s medical condition, some partners may also find it difficult to discuss their own concerns, convinced that their own worries pale in comparison to those of their partner.
When either member of a couple withdraws from social or physical activities because of anxiety, the other will tend to withdraw as well. Both partners and patients often withdraw under the misconception that they are helping to prevent or reduce the chance of ICD shock. Disagreements over the patient’s eating habits, dependence or independence, activity or medical decisions are very common and may cause tension among couples, but these disagreements are typical of the ongoing process of adjustment.
And here’s what cardiologists want patients to know about adjusting to an ICD (via WomenHeart: The National Coalition For Women With Heart Disease)
.Researchers offered these important suggestions to help patients and their partners adjust to living with an ICD:
- learn as much as possible about the ICD
- acknowledge the benefits of living with an ICD
- use the expert support of health care providers
- assist your loved one in performing daily and ICD-related tasks
- discuss each other’s changing roles in caring for ICD-related matters
- focus on the positive aspects of caregiving
- be assertive in expressing your struggles
- learn and implement relaxation techniques
- learn how to respond to ICD shock
- seek support in each other as well as in ICD support online or in groups
- know when to seek professional help
- participate in physical and social activities
- listen, be patient, withhold judgements
- seek subtle ways to become more intimate – take it slow!
- encourage the patient to live life fully while doing activities previously enjoyed
- inform children/ family members about shock and how the ICD works
This study’s researchers summarize by reminding us that partners of ICD patients may face difficulties on several fronts including:
- caregiving expectations
- learning about the ICD
- managing stress related to the future of living with cardiac disease in the partner
Doctor appointments, health education, and frequent discussions about necessary changes may be an unwanted reminder about a partner’s heart condition, they add.
“The goal for both people is to achieve a high quality of life because of the protection that the ICD provides. A good quality of life is obtainable when the patient and the partner, along with the help of friends, family, and health care providers, can work as a team.
“Together, this goal can be reached by adjusting to life with an ICD, avoiding or managing psychological distress, and maintaining healthy relationships and activities.”
(1) L. Sowell et al. Anxiety and marital adjustment in patients with implantable cardioverter defibrillator and their spouses. J Cardiopulm Rehabil Prev. 2007; 27: 46–49.
(2) Coping With My Partner’s ICD and Cardiac Disease. A. G. Hazelton, S. Sears, K. Kirian, M. Matchett, J. Shea, Circulation. 2009; 120: e73-e76.
- ICD Warning: Defective “Riata” Defibrillator Leads Recalled
- What sudden cardiac arrest looks like
- What heart patients want ICD makers to know
Q: How have you and your partner adjusted to life with an ICD?