Decision Making in Patients with Cardiac Defibrillators

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DESCRIPTION (provided by applicant): Dr. Goldstein's career goal is to become an independent investigator whose research will improve the care of older adults by better understanding their use of advanced medical technologies. The purpose of this K23 award is to support a series of career development activities that will include formal didactic coursework, a program of formal mentoring, and targeted clinical research. The work proposed in this application involves studying communication about Implantable Cardioverter-Defibrillators (ICDs). These devices can deliver a shock to terminate a potentially lethal arrhythmia, and while they reduce the incidence of sudden cardiac death, patients with ICDs do eventually die. As a patient's disease worsens, physiologic changes lead to more arrhythmias, increasing the frequency of shocks. Since discharges from the ICD can cause pain and anxiety and may not prolong a life of acceptable quality, it is appropriate to consider deactivation of the ICD as a patient's clinical status worsens and death is near. Dr. Goldstein has shown that clinicians and patients rarely engage in discussions about deactivating ICDs. Given the exponential increase in the number of ICDs (>225,000 since 1995) implanted in older individuals now and in the foreseeable future, tens of thousands of aging adults may experience a painful and frightening death as a consequence of failure of timely ICD deactivation. The purpose of the series of projects proposed in this application is to determine the epidemiologic patterns of care of older patients with ICDs near the end of life; to evaluate physicians' perceptions of triggers and barriers to discussion about ICD deactivation; and to survey patients/families as to their willingness to discuss ICD deactivation and their preferred role in making these decisions. The aims of these projects are 1) to determine the number of older patients with ICDs and document their healthcare utilization near the end of life; 2) to better understand physicians' perceptions of the barriers/triggers that prohibit/prompt deactivation conversations; and 3) to describe patients' experience of these discussions, evaluate their willingness to engage in them, and assess their understanding of the need for device deactivation near life's end. To achieve the first aim, the candidate will analyze Medicare datasets to characterize the clinical circumstances of care received by ICD patients at the end of life. Next, he will perform a nationwide telephone survey of randomly selected clinicians to validate his previous qualitative work and further clarify the barriers/triggers to deactivation discussions. Finally, he will create a national cohort of patients with ICDs who meet criteria for hospice and perform interviews with them and their families to determine factors which might improve communication about ICDs. These studies will generate preliminary data that will allow Dr. Goldstein to secure R01 level funding to create a decision tool to support timely and appropriate ICD deactivation in order to reduce the frequency of shocks in dying patients.