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Next of kin reported that clinicians discussed deactivating ICDs with few patients. Individuals who choose to receive this device should have the opportunity to choose to discontinue it as death approaches.

BACKGROUND Advanced lung cancer (LC) patients and their families report low self-efficacy for self-care/caregiving and high rates of distress, yet few programs exist to address their supportive care needs during treatment. OBJECTIVE This pilot study examined the feasibility, acceptability, and preliminary efficacy of a 6-session telephone-based dyadic psychosocial intervention that we developed for advanced LC patients and their caregivers. The program is grounded by Self-determination Theory (SDT), which emphasizes the importance of competence (self-efficacy), autonomy (sense of choice/volition), and relatedness (sense of belonging/connection) for psychological functioning. Primary outcomes were psychological functioning (depression/anxiety) and caregiver burden. Secondary outcomes were the SDT constructs of competence, autonomy, and relatedness. METHODS Thirty-nine advanced LC patients who were within one month of treatment initiation (baseline) and their caregivers (51% spouses/partners) completed surveys and were randomized to the intervention or usual medical care. Eight weeks post-baseline, they completed follow-up surveys. RESULTS Solid recruitment (60%) and low attrition rates demonstrated feasibility. Strong program evaluations (X̄=8.6 out of 10) and homework completion rates (88%) supported acceptability. Participants receiving intervention evidenced significant (p<.0001) improvements in depression, anxiety, and caregiver burden relative to usual medical care. Large effect sizes (d>1.2) favoring the intervention were also found for patient and caregiver competence and relatedness, and for caregiver autonomous motivation for providing care. CONCLUSION These findings support intervention feasibility, acceptability, and preliminary efficacy. By empowering families with skills to coordinate care and meet the challenges of LC together, this intervention holds great promise for improving palliative/supportive care services in cancer.

Objective To understand potential patient barriers to discussions about implantable cardioverter defibrillator (ICD) deactivation in patients with advanced illness. Design Qualitative focus groups. Participants Fifteen community-dwelling, ambulatory patients with ICDs assigned to focus groups based on duration of time since implantation and whether they had ever received a shock from their device. Approach A physician and a social worker used a predetermined discussion guide to moderate the groups, and each session was audiotaped and subsequently transcribed. Transcripts were analyzed using the method of constant comparison. Results No participant had ever discussed deactivation with their physician nor knew that deactivation was an option. Patients expressed a great deal of anxiety about receiving shocks from their device. Participants discussed why they needed the device and expressed desire for more information about the device; however, they would not engage in conversations about deactivating the ICD. One patient described deactivation “like an act of suicide” and all patients believed that the device was exclusively beneficial. Patients also expressed a desire to have their physician make the decision about deactivation. Conclusions None of the patients in our study knew that they might need to deactivate their ICD as their health worsens. These community-dwelling outpatients were not willing to discuss the issue of ICD deactivation and their attitudes about deactivation might impede patients from engaging in these conversations. These findings are in contrast to findings in other advance care planning research and may be related to the unique nature of the ICD.

Abstract-Significant mortality benefits have been documented in recipients of implantable cardioverter defibrillators (ICDs); however, the psychosocial distress created by the underlying arrhythmia and its potential treatments in patients and family members may be underappreciated by clinical care teams. The disentanglement of cardiac disease and device-related concerns is difficult. The majority of ICD patients and families successfully adjust to the ICD, but optimal care pathways may require additional psychosocial attention to all ICD patients and particularly those experiencing psychosocial distress. This state-of-the-science report was developed on the basis of an analysis and critique of existing science to (1) describe the psychological and quality-of-life outcomes after receipt of an ICD and describe related factors, such as patient characteristics; (2) describe the concerns and educational/informational needs of ICD patients and their family members; (3) outline the evidence that supports interventions for improving educational and psychological outcomes for ICD patients; (4) provide recommendations for clinical approaches for improving patient outcomes; and (5) identify priorities for future research in this area. The ultimate goal of this statement is to improve the precision of identification and care of psychosocial distress in ICD patients to maximize the derived benefit of the ICD. (Circulation. 2012;126:2146-2172.)Key Words: AHA Scientific Statements Ⅲ anxiety Ⅲ depression Ⅲ implantable cardioverter defibrillator Ⅲ patient education Ⅲ patient outcomes assessment Ⅲ psychological responses Ⅲ quality of life F or patients who receive an implantable cardioverter defibrillator (ICD) for primary or secondary prevention of life-threatening ventricular arrhythmias, the initial experiences related to care for cardiac arrhythmias and ICD therapy are often dramatic. This is especially true if the index event is a sudden cardiac arrest (SCA). Additionally, many patientsThe American Heart Association makes every effort to avoid any actual or potential conflicts of interest that may arise as a result of an outside relationship or a personal, professional, or business interest of a member of the writing panel. Specifically, all members of the writing group are required to complete and submit a Disclosure Questionnaire showing all such relationships that might be perceived as real or potential conflicts of interest.This statement was approved by the American Heart Association Science Advisory and Coordinating Committee on July 26, 2012. A copy of the document is available at http://my.americanheart.org/statements by selecting either the "By Topic" link or the "By Publication Date" link. To purchase additional reprints, call 843-216-2533 or e-mail kelle.ramsay@wolterskluwer.com.The American Heart Association requests that this document be cited as follows: Dunbar SB, Dougherty CM, Sears SF, Carroll DL, Goldstein NE, Mark DB, McDaniel G, Pressler SJ, Schron E, Wang P, Zeigler VL; on behalf of the American Heart As...

Objective To identify factors associated with caregiver burden among those caring for terminally ill patients with cancer. Design Cross-sectional study of interviews with primary caregivers (n=206) of consecutive patients with cancer enrolled in the largest hospice in Connecticut. Methods Data were collected on the caregivers’ sociodemographic characteristics, social network index, and number of restrictions in their own activities due to their caregiving role. The outcome was a nine-item questionnaire adapted from the Zarit Burden Inventory. Results The highest burden was reported among caregivers with more limited social networks (OR 1.38, CI 1.02–1.87), more restrictions in their daily activities (OR 1.35, CI 1.13–1.61), and who were younger (OR 1.46, CI 1.10–1.93). Conclusions Variations exist in the intensity of caregiver burden based on subjective experiences and social support, rather than on the amount of assistance provided. Clinicians should consider factors such as these when targeting caregivers for interventions to alleviate burden.

OBJECTIVE To understand potential barriers to physician-initiated discussions about Implantable Cardioverter Defibrillator (ICD) deactivation in patients with advanced illness. DESIGN Qualitative one-on-one interviews. PARTICIPANTS Four electrophysiologists, 4 cardiologists, and 4 generalists (internists and geriatricians) from 3 states. APPROACH Clinicians were interviewed using open-ended questions to elicit their past experiences with discussing deactivating ICDs and to determine what barriers might impede these discussions. Transcripts of these interviews were analyzed using the qualitative method of constant comparison. RESULTS Although many physicians believed that conversations about deactivating ICDs should be included in advance care planning discussions, they acknowledged that they rarely did this. Physicians indicated that there was something intrinsic to the nature of these devices that makes it inherently difficult to think of them in the same context as other management decisions at the end of a patient’s life. Other explanations physicians gave as to why they did not engage in conversations included: the small internal nature of these devices and hence absence of a physical reminder to discuss the ICD, the absence of an established relationship with the patient, and their own general concerns relating to withdrawing care. CONCLUSION Whereas some of the barriers to discussing ICD deactivation are common to all forms of advance care planning, ICDs have unique characteristics that make these conversations more difficult. Future educational interventions will need to be designed to teach physicians how to improve communication with patients about the management of ICDs at the end of life.