ICD Discussions: Closing the Gap Between What We Say and What They Understand

Miriam Zylberglait Lisigurski, MD; Marlena Fernandez, MD; Binna Chokshi, MD; Nader Lamaa, MD; Hamid Feiz, MD


South Med J. 2018;111(8):501-503. 

More than 20 million adults worldwide have a diagnosis of heart failure (HF).[1] The prevalence in the United States is expected to increase by 46% from 2012 to 2030, resulting in an increase from 5 million to 8 million Americans living with this condition.[2] Approximately 50% of people diagnosed as having HF will die within 5 years.[1] Implantable cardioverter-defibrillators (ICDs) are considered the standard of care to prevent sudden cardiac death in high-risk patients with HF. Approximately 800,000 Americans have an ICD[3] and >100,000 devices are implanted annually. Of those devices, 50,000 are inserted in patients 65 years and older, with >40% of patients aged 70 years and older.[4]

Although the ICD may reduce mortality, it does not improve a patient's baseline medical condition and may function as a bridge until long-term measures are decided. Regardless of its proven efficacy, many patients with an ICD will eventually die of a noncardiac condition, such as cancer or dementia.[5] Despite this fact, it has been reported that many patients still believe that an ICD is curative and only after implantation do they realize that the device is a temporizing measure.[2]

The lack of knowledge and unrealistic expectations of the function of this device affect each patient's capacity for medical decision making regarding implantation, cardiac transplant, hospice, and deactivation of the device at the end of life.[1] Studies have reported that the majority of patients with an ICD did not discuss with their physicians the potential risks or long-term complications before the procedure.[6] Furthermore, it has been documented that even after education most patients have a poor understanding of the risks and benefits of ICD therapy.[6,7] There also exists a concerning large number of physicians who believe that the mortality benefit outweighs a patient's preference regarding the need for ICD therapy.[8] On the basis of this, it is becoming increasingly important to educate and inform ICD candidates and actively involve them in the medical decision-making process.

The informed consent conversation should begin with educating the patient about the potential risks of serious complications during and after the procedure. A systematic review on ICD placement found an overall complication rate of 9.1%, which included device displacement (3.1%), pneumothorax (1.1%), hematoma (1.2%), and infection (1.5%).[9] Re-education should continue with the potential need for generator changes once the battery life is near its end. This is particularly important in relatively young patients, who may need several generator changes during their lifetime. Although elective generator exchange is considered a relatively straightforward procedure, it is still associated with a major complication rate of approximately 4% and increased risk for mortality[10] (Table).

ICD therapy has a complexity that goes beyond clinical aspects and mortality. The ethical aspects of ICD therapy are just as important as the medical necessity and benefit of treatment (Table). The unexpected painful shocks, especially during the end of life, add an emotional component that affects the quality of life of patients and their families.[11] A meta-analysis of >5000 patients with ICDs reported an 11% to 28% incidence of depression and anxiety disorders.[1] Several studies highlight the fact that advance directives are underused in patients with heart failure.[1] Although approximately 27% of patients receive ICD shocks at the end of their lives,[11] it has been documented that most patients with ICDs are unaware that their device could be deactivated. After being educated about this topic, most of those patients reported an interest in discussing ICD deactivation.[1]

The informed consent conversation between patient and physician is not always an easy one. Low health literacy, inadequate communication, cognitive impairment, language barriers, and differences in cultural backgrounds are some of the components that increase the gap between what a physician says and what the patient understands (Figure). Patients' engagement in their own health care relies heavily on health literacy. In spite of improvements in health education and increased access to medical information, low health literacy still affects a majority of the population.[12] The challenge becomes even greater with ever-increasing barriers limiting one-to-one time, subsequently affecting the length and quality of the interaction between patients and providers.[12] It is important to remember that poor communication also erodes patient trust, leading to reduced compliance, nonadherence to medical advice, disenrollment in health plans, and lack of utilization of preventive services.[7]


Potential strategies to improve communication between patients and physicians regarding ICDs. ICDs, implantable cardioverter-defibrillators; MOCA, Montreal Cognitive Assessment.

Physicians' communication skills contribute to as much as 50% of the quality of care that patients receive.[7] A patient–physician communication process that involves patient-centeredness and adequate information provision has been demonstrated to have a beneficial effect on patient satisfaction, disease knowledge, adherence, emotional health, and recovery.[7] Effective communication, explaining the risks and benefits as well as the different alternatives while avoiding personal bias, is key.

It is essential to evaluate each patient individually to determine whether any communication barriers are present (Figure). For example, the levels of health literacy and cognitive function must be established, and those with diminished function or understanding may require and benefit from familial support. If the patient is unable to make medical decisions, then a proxy should be obtained. It also is important to communicate in a language that the patient fluently understands. Translation assistance, such as a certified medical translation line, should be requested if there is any language mismatch between the physician and the patient.

After these barriers are removed, the physician should begin to establish goals of care and focus on delivering information effectively. Teaching can be supplemented with audiovisuals, including tutorial videos or interactive computer programs. In patients with poor prognoses discussions about advanced therapies beyond ICD, such as left ventricular assist devices or cardiac transplant should be addressed (Table). Similarly, conversations about end-of-life issues that include involvement of palliative care and possible transition to hospice care should be initiated.[1] In such cases the involvement of a palliative physician, along with the patient's primary care physician, cardiologist, and other healthcare personnel (eg, psychologists, social workers), is prudent and beneficial.[13]

In summary, ICD therapy has several short- and long-term implications, and it is important not to assume that all patients are solely concerned with the "here and now."[5] It is fundamental to initiate the informed consent conversation, assess patient understanding and readiness to cope with difficult decisions, and address potential adverse effects so that patients establish realistic goals. Improving physicians' communication and educational skills, promoting their engagement on end-of-life conversations, and respecting patients' individual preferences may help to reduce the gap and facilitate the decision-making process for patients and their families.