Appendix Table 1.

ICD interview guide.

I will ask you a number of questions and you just answer to them to the best of your ability. Remember I will be recording this interview, but no one outside of the study team will have access to the tapes. If you get uncomfortable and want to stop the interview, let me know, and we will stop immediately. So, let’s get started. 1. Tell me about living with heart failure. 2. When did you get your ICD? 3. Can you tell me why you have the ICD? 4. Can you tell me how it works? 5. Have you ever had an issue with the ICD—that is, replacement, recalls, position?             Has it ever gone off?              What was it like?             Do you worry about it going off? 6. If a patient with an ICD was dying and the heart went into an irregular rhythm, the ICD would fire and shock the heart until the irregular rhythm stopped. The only way to stop the ICD from shocking the heart is to turn it off. Turning off the ICD doesn’t hurt. It is done either in the defibrillator clinic with the computer or with a large magnet placed over the ICD at the bedside. They can turn off the ICD but keep the pacemaker going. 1. Do you remember talking to anyone about deactivating the ICD?  Can you tell me about that discussion (When, Why?) 2. When would you like to discuss the possibility of turning off the ICD? 3. Who do you think should start these discussions?   a. Would you want the doctor to wait until you asked about it or would you want the doctor to start the discussion? 4. Describe these discussions for me—how would they work, what would you talk about?   a. What issues do you think should be discussed?   b. What information would you need to decide if turning off the ICD is the right thing to do? 5. Have you ever thought about turning off the ICD? 6. Would you consider turning off the ICD?