Survivor Support

Patient Support and Reintegration

When a loved one experiences sudden cardiac arrest, family members are devastated and shocked by the swiftness and cruelty of the event much the same as families of other victims of tragedies such as motor vehicle collisions.

The ability to understand an SCA event is quite different from other tragedies however, because few people understand what SCA is, or how their loved one came to be a victim.

Impact of SCA

Whether or not their loved one has survived, all families need to leave the hospital with an informed understanding of sudden cardiac arrest and the ability to access resources they may need as they take back their lives.

For survivors and their families, leaving the hospital after experiencing a sudden cardiac arrest can be a terrifying experience. Many survivors have received an implantable cardiovertor (ICD) to prevent future fatal arrhythmias and may have multiple concerns related to the device.^{1-3, 4, 5} It is thought that up to 40% of survivors may experience mild to moderate cognitive impairments following arrest. The most common cognitive issue is thought to be memory loss or delayed recall.⁶ The cause, prognosis and methods for coping with these deficits must be addressed. If deficits such as forgetfulness, reduced attention to stimuli, comprehension and problem-solving ability are not identified and managed, they can lead to high levels of depression, anxiety anger and stress, as well as social isolation and behavior changes.⁷ Survivors should have access to intervention programs to aid their adjustment, family coping and reintegration into society.^8-9 As they prepare for hospital discharge patients should have the opportunity to meet with their health care providers to ask questions relevant to managing their concerns. Ideally every institution should have a discharge policy which includes this opportunity.

Basic Needs upon Hospital Discharge

• At discharge, survivors and families should receive referrals to resources for any additional physical rehabilitation programs to help them cope with existing brain injury.
• Honest and specific answers to questions are highly appreciated by survivors and families.
• Survivors welcome resources they can access for accurate information about their condition. Resources given at hospital discharge are most helpful if they have been screened for accuracy and relevance to the patient’s specific diagnosis. For example, information about SCA caused by an inherited disorder may not be relevant for someone who experienced arrest due to a myocardial infarction. (Sources of patient information are included in the Appendix)
• Knowledge of what to expect and how to react when symptoms are experienced after hospital discharge can be very helpful to the patient. What types of symptoms should prompt a call to 911; when is it appropriate to call my doctor?
• Although the implantation of an internal cardiodefibrillator (ICD) can provide some reassurance that sudden death will not occur again, individuals cannot help but worry and wonder each time there is a twinge of pain or feeling of discomfort. Up to 35% of patients develop anxiety disorders following ICD placement,¹⁰ and need to learn coping skills as well as what to do if they receive a shock from a new ICD.
• Information should be available that both advocates the use of counseling and support groups, and gives appropriate referrals to individuals and groups experienced with survivor concerns. Often survivors have very real and potentially paralyzing concerns about how to resume their lives. Do I plan for the future, or not? Referral to counselors who are experienced with these issues, specifically for this population, can help survivors begin to deal with and resolve their concerns.