Reducing Psychological Distress in Adult and Pediatric ICD Patients

The use of the implantable cardioverter defibrillator (ICD) increased significantly in the United States in both adults and pediatric patients as newer indications for the device were introduced.^{1, 2} There are certainly major life-saving benefits to the patient in having an ICD in the event of a life-threatening arrhythmia, but this therapy is often accompanied by psychosocial distress^3-5 during all aspects of care: pre-implant; post-surgery healing; post-implantation follow-up for years and in the young, longer for a lifetime; and at end of life. During the pre-implant visit or event, the patient, family, or parent in the case of a child must make the important life-changing decision about ICD implantation, thinking through the benefit versus burden of ICD within a short time frame with only partial answers to some important questions. For example, health care professionals cannot predict with certainty the long-term effectiveness of the ICD in an individual patient or a patient’s longevity. Immediately after surgery and during follow-up, health care professionals help the patient and their family to accept the device and adjust their lifestyles as needed to be able to follow a detailed plan of care.³ As the patient nears the end of life, health care professions suggest palliative care and assess ICD function as heart function deteriorates.⁶

A recently published American Heart Association (AHA) Scientific Statement⁷ provides a comprehensive summary of the literature and an expert review of care of the adult and pediatric ICD patient. These authors⁷ summarize five challenges that ICD patients face: (a) dealing with underlying cardiovascular disease; (b) dealing with the fact that the ICD will not reverse the cardiovascular disease; (c) dealing with comorbidities; (d) dealing with the technological part of the device itself; and (e) dealing with the psychosocial distress that accompanies ICD. Foremost, the patient is dealing with the threat of a sustained ventricular arrhythmia and total reliance on a device to identify and cancel that arrhythmia.³ Regardless of whether ICD patients choose to deal with their psychosocial responses to cardiovascular disease or their mortality in the past, they cannot help but focus on the underlying disease state now, given the ICD. Therefore, it is not surprising then that 94% of ICD patients reported a preoccupation with their heart.⁸

The review⁷ points out the great heterogeneity in both the adult and pediatric populations, one factor that makes it challenging to study them. ICDs are implanted in adult patients after a history of cardiac symptoms and then sudden cardiac arrest; after no symptoms and an unexpected cardiac arrest; and in adults with Class II and III heart failure (while undergoing optimal medical therapy who have reasonable expectation of survival for > 1 year with good functional status).^9,10 ICDs are implanted in pediatric patients with a wide variety of congenital cardiac diagnoses and cardiac surgeries¹¹; and, more recently, in children with no symptoms but who are found to have a genetic disposition to sudden cardiac arrest,¹² for example based on a recent sudden cardiac arrest event in a sibling. In this case, the child and the parents may be totally unaware of the need for an ICD.

Dunbar and colleagues⁷ focused on the challenges of pediatric ICD care including the presence of complex cardiac anatomy, a high incidence of inappropriate shocks due to supraventricular arrhythmias, and lead and device complications.^13,14 So, in addition to the health and developmental challenges pediatric patients already have pre-op, when post-op with an ICD they are faced with the psychosocial challenges of having an implanted device. If current work¹⁵ to develop a subcutaneous ICD in adults to replace transvenous lead systems is successful and can be translated for use in children, then the problem with broken leads in children may disappear over time.¹⁶

The major premise of the scientific statement⁷ is that psychosocial responses of ICD patients and family members are largely unappreciated and warrant greater attention by health care professionals. This situation is undoubtedly multi-factorial. First, the degree of heterogeneity in persons with ICD results in a wide range of types and intensities of psychosocial distress. In addition to the anxiety, depression, and post-traumatic stress disorder often seen in persons living with cardiac disease, other types of distress in the adult patient with ICD may be missed and include fear of being shocked, battery failure, or device recall; fear of traveling; concerns about altered body image, family roles, and childbearing; and extended uncertainty. Those types of psychosocial distress associated with pediatric patients with ICD vary by developmental age and include peer rejection, sports and activity restrictions, non-acceptance of the device and thoughts of having the device removed, and suicidal ideation. Second, health care professionals may be unaware that (a) psychosocial distress after ICD ranges from mild to very severe with it interfering with quality of life especially after more than 5 shocks or after excessive, unnecessary, repeated shocks,¹⁷ and (b) psychological distress can come from not only the anticipation and then inability to predict shocks but also from the actual shock pain described by persons with ICD as significant: 5 on a scale of 1-10. Third, psychosocial distress after ICD may remain unrecognized because, many times, it is difficult to tease out the ICD-related psychosocial distress from other sources of distress like cardiac disease or comorbidity-related, or home- or family-related distress. Finally, the research studies using specifically ICD-focused research instruments about psychosocial distress are limited in number, so a solid research base specific to practice-related decision making regarding psychosocial distress is lacking.

This scientific statement⁷ provides a summary of studies and a wake-up call reinforcing that, so far, there are less than adequate numbers of studies on the effectiveness of interventions on psychosocial distress after ICD. This may be due to lower numbers of ICD patients in the past as well as the propensity, early on, to use broader, non--ICD-related research instruments. One intervention, cognitive behavior therapy, shows some promise. In addition, no research was found on educational and psychosocial interventions in pediatric patients and their parents after ICD, and very few data to document the psychosocial impact of ICD on pediatric patients.

A particularly interesting point illustrated in the AHA scientific statement⁷ is the preparation of the ICD patient and family for end of life care. This is particularly challenging given that the end of the life cannot be predicted, but also challenging for other reasons. There is no research to indicate the best time to include a palliative care team or introduce palliative care principles as part of education. For example, there is debate as to whether at the first pre-implant visit the health care professional should talk about end of life care as part of the benefit versus burden discussion. There is also no research on the benefits or drawbacks of telling the person and their family at the pre-implant visit that the ICD can be shut off as life nears its end and the cardiac condition deteriorates, the ICD misfires or fires repeatedly, and the shock pain distresses the person.⁶

Several pearls of wisdom were found in the scientific statement⁷ that will lead to future thinking about the ICD patient. It was apparent that education must be ongoing at every contact or visit; baseline and consecutive ICD-related measures of distress are imperative, and interventions and their effectiveness are documented, but where? For continuity of care, it makes sense that one readily available electronic record called ICD history or ICD diary be kept and updated from the first pre-implant visit to end of life. If this is not possible on current electronic medical records systems, the ICD patient or family might be encouraged to keep this comprehensive record, although the downfall of this plan is that the record might not be readily available in all medical situations and the record of psychosocial distress would need to be handled as private information.

Second, could the ICD patient educate others? Asking ICD patients to help educate those who do not know the experience first-hand might be of benefit. Health care professionals can have persons with ICDs be part of in-service education. In addition, persons planning on getting an ICD may benefit from meeting with a group of people who already have one implanted, like an initial support group. Furthermore, adolescents early after ICD implantation may adjust to ICD better if introduced to adolescents (peers) with an ICD.

Third and, finally, optimal care pathways for both adults and pediatric ICD patients must include attention to psychosocial responses. In this way, they must include support for the patient trying to cope with things about the ICD that seem difficult: (a) ethical dilemmas are inherent in decision making about ICD; (b) ICD is not a cure; (c) some technical aspects of ICD that remain problems cannot be resolved right now; and (d) the need for acceptance of the device and adjustment in everyday life is necessary in both patients and families after ICD.