Author Affiliations: Sections of Cardiology (Drs Dodson and Lampert) and Geriatrics (Drs Dodson, Fried, and Van Ness), Department of Internal Medicine, Yale University School of Medicine, New Haven, Connecticut; Department of Geriatrics and Palliative Care, Mount Sinai School of Medicine, New York, New York; James J. Peters VA Medical Center, Bronx, New York (Dr Goldstein).
While implantable cardioverter-defibrillators (ICDs) prolong life, painful shocks can occur at the end of life, and physicians rarely discuss the option of device deactivation.1,2 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 even in deleterious future health states including terminal cancer,4 constant dyspnea,5 or frequent shocks.5,6
We examined preferences for ICD deactivation in the context of health outcomes such as functional and cognitive disabilities shown to matter most to patients.7 Our survey provided an informational description of the potential benefits and burdens of the shocking function of ICDs and subsequently presented scenarios describing broad health outcomes common in patients approaching the end of life.
We recruited ICD patients 50 years and older who were followed in a single academic electrophysiology practice (Yale University). Eligible participants were English speaking and had received a new ICD implant or generator change between January 1, 2006, and December 31, 2009. We excluded patients who were cognitively impaired, had an initial device within the past year, or had a cardiac resynchronization therapy-capable device. Eligible participants were contacted by telephone by 1 investigator (J.A.D.), and those consenting were administered a 20-minute telephone survey. The study was approved by the Yale Human Investigation Committee.
The survey (eAppendix ) included 2 open-ended questions: “What do you feel are the potential benefits of your ICD?” and “What do you fell are the potential harms of your ICD?” Responses were transcribed and later categorized by 3 investigators (J.A.D., T.R.F., and R.L.), with discrepancies resolved through consensus. Participants were then read a standardized script providing the best current evidence regarding benefits and burdens of ICDs. Subsequently, participants were asked whether they would want their ICD deactivated in 5 scenarios representing key domains of health8 that strongly influence treatment preferences.7 The scenarios were as follows: (1) permanently unable to get out of bed, (2) permanent memory problems, (3) burden to family members, (4) prolonged mechanical ventilation (>1 month), and (5) advanced incurable disease. Participants responded using a scale of 1 (“definitely no”) to 5 (“definitely yes”); they were classified as wanting deactivation if they responded “possibly yes” or “definitely yes” to at least 1 scenario.
Of 136 eligible patients contacted, 95 (70%) agreed to participate. The mean (SD) age was 71.4 (10.6) years, 28% were female, and 19% were nonwhite. The mean (SD) duration of ICD placement was 4.0 (2.4) years prior, and 29% of participants had received a prior ICD shock.
Thirty-one participants reported “unknown” or “no” benefits of their ICD. Other responses were categorized as restarting the heart (n = 31), living longer (n = 27), improving quality of life (n = 7), other (n = 4 [3 patients thought the ICD prevented atrial fibrillation or stroke and 1 thought that it improved heart function]). Sixty participants could not name a potential harm. The remaining categories were receiving a shock (n = 14), device malfunction (n = 8), nuisance (n = 5), complication (infection or bleeding) (n = 2), inappropriate end-of-life shocks (n = 2), and other (n = 4 [1 was related to a phantom shock and 3 were related to unrealistic fears regarding harming the device—by lying down, touching the device, or falling]) (Figure).
Figure. Qualitative and quantitative results. a-fib Indicates atrial fibrillation; ICD, implantable cardioverter-defibrillator.
Sixty-seven participants (71%) wanted ICD deactivation in 1 or more scenarios. Responses to individual scenarios ranged from 61% wanting deactivation in the setting of advanced incurable disease to 24% wanting deactivation if permanently unable to get out of bed (eFigure). Participant characteristics associated with wanting deactivation included race and disability but not age (Table).
In contrast to prior findings, in our study, following an informational script the majority (71%) of participants wanted ICD deactivation in at least 1 scenario describing health outcomes that are common in patients approaching the end of life.
There are several potential explanations for why our findings differ from prior investigations suggesting that the majority of patients would not want deactivation even in scenarios reflecting advanced illness.4- 6 One may be the age of our study sample, which consisted exclusively of older individuals (age ≥50 years). Another may be the study protocol, which involved reading each participant an informational script explaining the purpose of their ICD. Our qualitative finding that a sizeable number of participants did not have a good understanding of the benefits or potential burdens of their ICD underscores this possibility and highlights the importance of physician communication of information. Finally, we included a broad range of scenarios reflecting outcomes of advanced functional, cognitive, and medical illness, which further highlight the importance of communication in the framework of goal setting around desired health states,9 since tolerance for shocks and discomfort will be based on the ultimate perceived outcome. We believe that our findings emphasize the importance of incorporating multiple patient-centered outcomes into advance care planning for ICD patients.
Correspondence: Dr Lampert, Yale University School of Medicine, Section of Cardiology, 789 Howard Ave, Dana 3, Room 319, New Haven, CT 06520 (firstname.lastname@example.org).
Published Online: January 28, 2013. 10.1001/jamainternmed.2013.1883. Corrected March 11, 2013.
Author Contributions:Study concept and design: Dodson, Fried, and Lampert. Acquisition of data: Dodson. Analysis and interpretation of data: Dodson, Fried, Van Ness, Goldstein, and Lampert. Drafting of the manuscript: Dodson. Critical revision of the manuscript for important intellectual content: Fried, Van Ness, Goldstein, and Lampert. Statistical analysis: Dodson and Van Ness. Obtained funding: Fried. Study supervision: Fried, Lampert.
Conflict of Interest Disclosures: Dr Lampert receives significant research grants from Medtronic, Boston Scientific, and St Jude and a modest honorarium from Medtronic.
Funding/Support: Support for this study was provided by a training grant in Geriatric Clinical Epidemiology from the National Institute on Aging (T32 AG019134) (Dr Dodson) and a mid-career mentorship award from the National Institute of Aging (K24AG028443) (Dr Fried). This work was supported in part by a grant from the Claude D. Pepper Older Americans Independence Center at Yale University School of Medicine (P30AG021342 National Institutes of Health/National Institute of Aging).
Thank you for submitting a comment on this article. It will be reviewed by JAMA Internal Medicine editors. You will be notified when your comment has been published. Comments should not exceed 500 words of text and 10 references.
Do not submit personal medical questions or information that could identify a specific patient, questions about a particular case, or general inquiries to an author. Only content that has not been published, posted, or submitted elsewhere should be submitted. By submitting this Comment, you and any coauthors transfer copyright to the journal if your Comment is posted.
* = Required Field
Disclosure of Any Conflicts of Interest*
Indicate all relevant conflicts of interest of each author below, including all relevant financial interests, activities, and relationships within the past 3 years including, but not limited to, employment, affiliation, grants or funding, consultancies, honoraria or payment, speakers’ bureaus, stock ownership or options, expert testimony, royalties, donation of medical equipment, or patents planned, pending, or issued. If all authors have none, check "No potential conflicts or relevant financial interests" in the box below. Please also indicate any funding received in support of this work. The information will be posted with your response.
Dodson JA, Fried TR, Van Ness PH, Goldstein NE, Lampert R. Patient preferences for deactivation of implantable cardioverter-defibrillators.. JAMA Intern Med.. Published online January 28, 2013. doi:10.1001/jamainternmed.2013.1883
eAppendix. Patient preferences (survey instrument)
eFigure. Preferences for ICD deactivation based on hypothetical clinical scenarios
Some tools below are only available to our subscribers or users with an online account.
Download citation file:
Web of Science® Times Cited: 7
Customize your page view by dragging & repositioning the boxes below.
Care at the Close of Life EDUCATION GUIDES
Palliative Care for Patients with Heart Failure
All results at
Enter your username and email address. We'll send you a link to reset your password.
Enter your username and email address. We'll send instructions on how to reset your password to the email address we have on record.
Athens and Shibboleth are access management services that provide single sign-on to protected resources. They replace the multiple user names and passwords necessary to access subscription-based content with a single user name and password that can be entered once per session. It operates independently of a user's location or IP address. If your institution uses Athens or Shibboleth authentication, please contact your site administrator to receive your user name and password.