ICD patients need more education, psychological support
Implantable cardioverter-defibrillators (ICDs) have been demonstrated to reduce mortality, but treatment teams may not fully appreciate, or adequately respond to, the psychosocial distress ICD patients and their families experience, according to a statement from the American Heart Association.

The statement, published online Sept.  24 in Circulation, was endorsed by the Heart Rhythm Society and the American Association of Critical Care Nurses.

The statement is the result of an analysis of studies to identify the psychological challenges associated with ICDs and the effect of those challenges on patients and their families. Chair of the writing committee Sandra B. Dunbar, RN, DSN, of the Nell Hodgson Woodruff School of Nursing at Emory University in Atlanta, and colleagues also surveyed existing research to determine the effectiveness of various psychological and educational interventions in providing relief of depression, anxiety and symptoms of post-traumatic stress disorder (PTSD) at different stages of the cardiac disease process.

The studies showed that sexual activity and usual recreational pursuits were curtailed among ICD patients, often leading to depression among patients and their families. Patients who received shocks from their ICDs were found to have high levels of anxiety.

In addition, PTSD symptoms were common in patients who experienced cardiac arrest or sustained ventricular tachycardia and their family members who may have witnessed such events. Pediatric ICD patients experienced high levels of depression, mainly focused on the inability to participate in sports and other activities, over-protectiveness of parents, concerns about physical appearance and feeling “different.”

The authors found that patients consistently underestimated the effect their underlying heart disease would have on the quality and duration of their lives, and overestimated the impact the ICD would have on preserving their lives. The statement advised physicians to clearly explain that ICDs do not correct the underlying disease, and to set realistic expectations among patients and their families regarding the impact the patient’s disease state will have on his or her quality of life and life expectancy.

Dunbar and colleagues found that many patients received extensive education about the functioning and maintenance of the device, but were given little information about how the device will affect day-to-day activities and lifestyle. The statement advised the treatment team to discuss all the ramifications of the ICD with the patient and family before implantation, in order to ease psychological and social adjustment to the device. 

The statement suggested addressing end-of-life issues at the time of implantation to make patients and their families aware that the device can be deactivated when the patient enters the final stage of disease. A large proportion of hospice patients with ICDs suffer ICD shocks needlessly because the patients and/or their families did not realize that the devices could be deactivated or believed that deactivating the device would cause the patient’s death.

For all ICD patients, the authors recommended that the treatment team be more assertive in assessing the psychological and social impact of the device and proactive in offering interventions to relieve anxiety, depression and other symptoms. Education should help the patient and family members develop realistic expectations and to assist them in preparing for the effects of shocks, the progress of the disease and end-of-life issues.

Practitioners should inquire about psychological and social concerns at each follow-up visit and address the concerns and needs of family members as well as the patient. For pediatric patients, the authors advised gender-specific, age-appropriate information be available for patients and their families.