Despite, and perhaps sometimes because of, their life-saving benefits, ICDs are associated with a host of complex psychosocial problems, but clinicians and caregivers receive little training to deal with these problems. In response to these concerns, the American Heart Association (AHA) has published a scientific statement in Circulation to provide a “comprehensive review of what is and is not known about psychological responses and psychosocial care” for ICD patients and their families.
The authors note that many ICD patients and potential ICD patients don’t fully understand the limitations and implications of the device. For instance, they “have a tendency to believe that the device can ‘undo’ the negative consequences of their cardiac condition, overestimate benefits, and underestimate adverse aspects.”
The document provides an overview of psychological responses to ICD therapy and the quality of life issues that often come up for ICD patients and their families. The effect of ICD shocks on quality of life is discussed in detail. In addition, the impact on the intimate and sexual relationships of patients and their partners is explored.
Although they represent a small percentage of ICD patients, children are a very important subgroup. The document notes that “few data are available to fully understand the psychosocial impact of the ICD on pediatric and adolescent ICD recipients, and no longitudinal studies of psychosocial response over time are available.”
At the other end of life, the authors discuss the difficult issue of ICD deactivation “as a patient’s clinical status worsens and death is near.” Unfortunately, they note, “clinicians and patients rarely engage in discussions about deactivating ICDs, and most devices remain active until death” and “most patients are not even aware that deactivation of the shocking function is an option.”
“A shock from an ICD can be lifesaving, but it can also affect a person’s quality of life and psychological state,” said Sandra Dunbar, the chair of the statement writing group, in an AHA press release. “It’s important to look at this issue now because 10,000 people have an ICD implanted each month. They range from older people with severe heart failure to healthy children who have a gene that increases the risk of sudden cardiac arrest.”
Here is the press release from the American Heart Association:
Education, psychological support key for defibrillator patients
- Because depression, anxiety and post-traumatic stress disorder are common among people with implanted cardioverter defibrillators, doctors and nurses should provide gender- and age-specific information on the potential psychological impact.
- Each month, 10,000 people, including children, have a defibrillator implanted to restore normal heart rhythm and prevent sudden cardiac death.
- Emphasize that the ICD protects against sudden death, but does not improve your underlying heart condition unless the device does other things, such as certain types of pacing.
- Assess the patient’s concerns and psychological status at each follow-up visit.
- Develop a clear “shock plan” so patients and family members know what to do in the event of a shock.
- Help patients and their families deal with stressful situations that may develop with an ICD.
- Provide gender-specific, age-appropriate information for children and their families.