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Circulation. 2018;138:e272–e391. DOI: 10.1161/CIR.0000000000000549 September 25, 2018 e351 CLINICAL STATEMENTS AND GUIDELINES

in the proband. To be able to harvest quality DNA for such testing, medical examiners, hospital pathologists, and private pathologists need standards for harvesting and storing samples for later genetic testing. Family members of SCD probands who died suddenly (first cardiac event, death from natural causes, last seen alive and well within 12 hours), with autopsy findings showing structural abnormalities of uncertain significance (eg, ventricular hypertrophy, myocardial fibrosis, or minor ischemic heart disease [n=41]) had a 51% prevalence of genetic variants associated with sudden arrhythmic deaths, compared with 47% among a comparison group in which proband autopsies were completely negative.S13-15 4.	 Identification of the genotype can facilitate family screening.S13-16

14 TERMINAL CARE

Recommendations for Terminal Care References that support the recommendations are summarized in Online Data Supplement 59.

COR LOE Recommendations

I C-EO 1. At the time of ICD implantation or replacement, and during advance care planning, patients should be informed that their ICD shock therapy can be deactivated at any time if it is consistent with their goals and preferences.

I C-EO 2. In patients with refractory HF symptoms, refractory sustained VA, or nearing the end of life from other illness, clinicians should discuss ICD shock deactivation and consider the patients’ goals and preferences.

Synopsis

A particularly challenging area of medicine is recognizing when life-prolonging therapies may become burdensome or even harmful. This is particularly true near the end of life for patients with ICDs in whom once lifeprolonging shocks may only cause unnecessary morbidity and distress to both patients and loved ones.

Recommendation-Specific Supportive Text

1.	 Current evidence suggests that many patients are unaware of the possibility that their ICD can be deactivated without surgery.S14-1–S14-3 During decision-making, clinicians do not routinely inform patients about ICD deactivation.S14-4 Clinicians even disagree on whether discussions of deactivation should occur when patients are making a decision about an ICD-related procedure.S14-5 As a result, patients often do not include wishes about deactivation in advance care planning documents.S14-6 Consequently, surrogates usually make decisions about ICD deactivation without any prior discussions with the patient.S14-6 In hypothetical scenarios, patients with ICDs were able to identify scenarios in which they might choose to deactivate their ICD.S14-1,S14-7 This discussion can occur at any time, but it is particularly important to have it at the time of initial ICD implantation, at the time of reimplantation, and during preparation of advance care plans. 2.	 When ICDs are not deactivated at the end of life, patients and families suffer unnecessarily. Families have had unpleasant experiences of watching their loved one die while getting shocked repeatedly by an ICD.S14-8 In 1 survey of hospice staff, half of those surveyed noted that a deceased patient had been shocked by an ICD during the year prior to the survey.S14-9 This is unnecessary and easily preventable by having caring, patient-centered discussions with patients and their loved ones. In general, patients want their clinicians to initiate these discussions,S14-2,S14-10 so this recommendation is carefully worded to put the responsibility of initiating the discussion on the clinician. Ethically, patients and surrogates are free to choose to deactivate antitachycardia function.S14-11–S14-13 Most patients only elect deactivation of the antitachycardia functions while leaving the pacing function on. Even at the end of life, pacing (either for bradycardia or for resynchronization therapy) may be an important aspect of the patient’s QoL and may facilitate more alert and meaningful personal interactions. These differences are easily misunderstood, so they need careful explanation.

15 SHARED DECISION-MAKING

Recommendations for Shared Decision-Making References that support the recommendations are summarized in Online Data Supplement 60.

COR LOE Recommendations

I B-NR 1. In patients with VA or at increased risk for SCD, clinicians should adopt a shared decision-making approach in which treatment decisions are based not only on the best available evidence but also on the patients’ health goals, preferences, and values.S15-1–S15-5

I B-NR 2. Patients considering implantation of a new ICD or replacement of an existing ICD for a low battery should be informed of their individual risk of SCD and nonsudden death from HF or noncardiac conditions and the effectiveness, safety, and potential complications of the ICD in light of their health goals, preferences, and values.S15-1–S15-5

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