AHA Urges More Education And Support For ICD Patients

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

Statement highlight:
  • 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.
DALLAS, Sept. 24, 2012 — Improved patient education and ongoing psychological support will help people cope with the psychological distress of having an implanted defibrillator, according to a scientific statement from the American Heart Association.
The statement, published in the American Heart Association journal Circulation,  is a comprehensive review of the psychosocial and quality of life for people who receive an implantable cardioverter defibrillator External link (ICD) to restore normal heart rhythm and prevent sudden cardiac death. It includes recommendations for improved patient care and identifies areas where more research is needed.
The authors recommend routine screening and appropriate treatment for anxiety, depression and post-traumatic stress disorder, which patients with ICDs often experience.
“A shock from an ICD can be lifesaving, but it can also affect a person’s quality of life and psychological state,” said Sandra B. Dunbar, R.N., D.S.N., chair of the statement writing group. “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.”
Before implantation, clinicians should provide clear information about the benefits and limitations of the ICD, prognosis and impact on lifestyle including activity and occupation.
“Education and support need to include the patient and the family and be broader than just a focus on maintaining the device. Providers need to help patients address ICD-specific concerns about symptoms, heart disease treatment, physical activities and end-of-life issues,” said Dunbar, who is also the Charles Howard Candler Professor at the Nell Hodgson Woodruff School of Nursing at Emory University in Atlanta.
Among the statement’s recommendations to improve psychological outcomes, physicians and nurses should:
  • 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.
Although pediatric ICD recipients make up less than 1 percent of the ICD population, complications are more frequent and these patients will live with the defibrillators for a much longer period of time, according to the statement.
“Experiencing a shock is distressing and patients have a wide variety of responses,” Dunbar said. “Some find it very reassuring that it’s working, while others find the actual physical sensations frightening and overwhelming. That’s why we suggest that clinicians provide an ongoing assessment of ICD patients’ psychological needs.”
The statement identified several areas for further research, including predicting which patients are likely to experience psychological distress and how to alleviate it; the level of sports participation and physical activity appropriate for children and teens with ICDs; and when and how to discuss potential ICD deactivation near the end of life.
Co-writers include Cynthia Dougherty, R.N., Ph.D.; Samuel Sears, Ph.D.; Diane L. Carroll, R.N., Ph.D.; Nathan Goldstein, M.D.; Daniel Mark, M.D.; George McDaniel, M.D.; Susan J. Pressler, R.N., Ph.D.; Eleanor Schron, R.N., Ph.D.; Paul Wang, M.D. and Vicki Zeigler, R.N., Ph.D. Author disclosures are on the manuscript.
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Comments

  1. akismet-9a3458c127f10299f379416f2426a79a says:

    The messages in this paper are relevant and important. It’s true that patients referred for ICD should receive far better education. I’d even consider a strong recommendation for a pre-implant palliative care consult. I am totally supportive here.

    But that said, this document was awful. Did you read it? I tried and fell asleep twice. It was redundant, preachy and insultingly long. I looked at some of the (200+) references; they were ridiculously small senior-project like studies published in obscure journals.

    Am I off base? Are there not editors?

    I realize position papers are not blogs, but this was crazy.

    JMM

    Sent from my iPad

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