Implantable Cardioverter‐Defibrillator Recipient Attitudes towards Device Deactivation: How Much do Patients Want to Know?

Raphael, Claire E.; Koa‐Wing, Michael; Stain, Nolan; Wright, Ian; Francis, Dárrel P.; Kanagaratnam, Prapa

doi:10.1111/j.1540-8159.2011.03223.x

Cited by 52 publications

(52 citation statements)

References 21 publications

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“…Similarly, the informed consent process tends to concentrate on peri‐procedural and short‐term risk rather than considering events, sometimes perceived as hypothetical, later in the course of life. Evidence suggests that patients and families sometimes anticipate later adverse clinical scenarios and show a willingness to confront these issues at the time of implantation 30, 31. Guidelines issued by the European Heart Rhythm Association suggest that end‐of‐life issues should be incorporated in pre‐implant discussions and revisited at intervals along the heart failure disease trajectory 32.…”

Section: Implanted Electronic and Mechanical Assist Devicesmentioning

confidence: 99%

Palliative care in heart failure: facts and numbers

Riley

Beattie

2016

ESC Heart Failure

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Millions of people worldwide have heart failure. Despite enormous advances in care that have improved outcome, heart failure remains associated with a poor prognosis. Worldwide, there is poor short‐term and long‐term survival. The 1 year survival following a heart failure admission is in the range of 20–40% with between‐country variation. For those living with heart failure, the symptom burden is high. Studies report that 55 to 95% of patients experience shortness of breath and 63 to 93% experience tiredness. These symptoms are associated with a high level of distress (43–89%). Fewer patients experience symptoms such as constipation (25–30%) or dry mouth (35–74%). However, when they do, such symptoms are associated with high levels of distress (constipation: 15–39%; dry mouth: 14–33%). Psychological symptoms also predominate with possibly as many as 50% experiencing depression. Palliative care services in heart failure are not widely available. Even in countries with well‐developed services, only around 4% of patients are referred for specialist palliative care. Many patients and their families would benefit from receiving specialist palliative care support.

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Section: Implanted Electronic and Mechanical Assist Devicesmentioning

confidence: 99%

Palliative care in heart failure: facts and numbers

Riley

Beattie

2016

ESC Heart Failure

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“…To prevent shocks at the end of life that do not meaningfully prolong survival, a recent Heart Rhythm Society consensus statement recommended proactive communication with patients regarding deactivation 3 . However, most surveys have found that the majority of ICD patients would not consider deactivation in even in deleterious future health states including terminal cancer 4 , constant dyspnea 5 , or receipt of frequent shocks 5,6 .…”

Section: Introductionmentioning

confidence: 99%

Patient Preferences for Deactivation of Implantable Cardioverter-Defibrillators

Dodson¹,

Fried²,

Ness³

et al. 2013

JAMA Intern Med

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“…141 In fact, most patients are not even aware that deactivation of the shocking function is an option, and a large number of ICD recipients indicate they would keep the ICD on even if dying of cancer or receiving daily shocks. 19,141,147 Interviews with electrophysiologists, cardiologists, internists, and geriatricians demonstrate that although all physicians believe they should take an active role in these conversations, they admit they rarely do. 148 In terms of management of devices in hospice, a recent nationwide study of hospices showed that 44% reported that at least 1 patient had been shocked by the ICD in the last year, and only 10% of hospices reported having a written policy that addressed deactivation (that is, a policy that encouraged discussion, not a policy that required deactivation).…”

Section: End-of-life Considerations and The Icdmentioning

confidence: 99%

Educational and Psychological Interventions to Improve Outcomes for Recipients of Implantable Cardioverter Defibrillators and Their Families

et al. 2012

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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...

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Implantable Cardioverter‐Defibrillator Recipient Attitudes towards Device Deactivation: How Much do Patients Want to Know?

Abstract: Patients with ICDs are routinely counseled about the benefits of ICDs, but options for device deactivation are not well understood by patients. Most patients would like to be involved in deactivation decisions and we feel this should be discussed well in advance.

Cited by 52 publications

References 21 publications

Palliative care in heart failure: facts and numbers

Palliative care in heart failure: facts and numbers

Patient Preferences for Deactivation of Implantable Cardioverter-Defibrillators

Educational and Psychological Interventions to Improve Outcomes for Recipients of Implantable Cardioverter Defibrillators and Their Families

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