Patient perceptions of implantable cardioverter-defibrillator deactivation discussions: A qualitative study

Abstract

Background:There is a class I recommendation for implantable cardioverter-defibrillator deactivation discussions to occur between physicians and heart failure patients. Few studies have reported the patient’s perspective on the timing of implantable cardioverter-defibrillator deactivation discussions.Aim:To determine patient awareness, preferences and timing of implantable cardioverter-defibrillator deactivation discussions.Design:Grounded theory was used to collect and analyze interview data from 25 heart failure patients with an implantable cardioverter-defibrillator.Setting and participants:Patients with an implantable cardioverter-defibrillator, from the Heart Function Clinic at University Health Network (Toronto, Canada).Results:The sample (n = 25) was predominately male (76%) with an average age of 62 years. Patients identified three stages where they felt implantable cardioverter-defibrillator deactivation should be discussed: (1) prior to implantation, (2) with any significant deterioration but while they were of sound mind to engage in and communicate their preferences and (3) at end of life, where patients wished further review of their previously established preferences and decisions about implantable cardioverter-defibrillator deactivation. Most patients (n = 17, 68%) said they would consider deactivation, six (24%) were undecided and two (8%) were adamant they would never turn it off.Conclusion:The patient preferences identified in this study support the need to include information on implantable cardioverter-defibrillator deactivation at implant, with change in clinical status and within broader discussions about end-of-life treatment preferences. Using this process to help patients determine and communicate their implantable cardioverter-defibrillator deactivation preferences may reduce the number of patients experiencing distressing implantable cardioverter-defibrillator shocks at end of life.

Unmet device reprogramming needs at the end of life among patients with implantable cardioverter defibrillator: A systematic review and meta-analysis

“…Although expert consensus statements and several guidelines recommend discussing deactivating the device shock function with patients who are nearing the end of their lives, and studies that have assessed patients' preferences have shown that most patients would prefer the shock function deactivation, 33,34 we found that nearly 75% of patients die with a fully active device. This reveals a gap both between guidelines and clinical practice and between patients' preferences and the reality of their last days of life.…”

“…Our pool estimate is low, given the results of studies that have assessed patients' desire for reprogramming. 17,33,34 In one of these studies, the authors included patients who were not yet at the end of life and told them about the potential benefits and burdens of an active shock function. Then, the authors presented to them hypothetical common scenarios such as incurable disease and permanent inability to get out of bed; 71% of participants wanted the implantable cardioverter defibrillator reprogrammed in at least one of these scenarios.…”

Implantable cardioverter defibrillator knowledge and end-of-life device deactivation: A cross-sectional survey

“…[8][9][10][11] Although the predominant response from participants in our study was that they would raise the issue of device deactivation themselves, our findings also demonstrate that there are a number of teachable moments at which ICD recipients are open to receiving information about ICD deactivation and end-oflife issues. 9,11,31 Although clinicians may be uneasy raising the topic of ICD deactivation, 15,16 our study provides further evidence that the majority of patients support provider initiation of such discussions. 12 It has previously been noted that patients generally prefer to have discussions about ICD deactivation and end of life when their health status worsens, rather than during regular appointments.…”

A systematic review of questionnaires about patient’s values and preferences in clinical practice guidelines

“…Furthermore, nine (45%) studies did not report the study design, 30 , 34 , 38 , 40 , 41 , 43 , 44 , 46 12 (60%) studies provided training to the study participants, 32 – 38 , 40 , 41 , 45 , 47 , 49 while four (20%) studies did not report information about patient training. 42 – 44 , 48 In addition, only five (25%) studies provided the method used to calculate the sample size 35 – 39 , 39 – 42 , 42 – 47 and only six (30%) studies investigated patient’s family members. 31 , 34 – 37 , 49 Finally, 17 (85%) studies provided information assessing patient knowledge and beliefs.30,32–35,37–45,47–49…”

“… 33 , 35 , 36 , 38 , 39 , 41 , 42 , 44 – 46 As for pretest and pilot testing, only four questionnaires (20%) mentioned that the survey had undergone cognitive pretesting or pilot testing. 33 , 35 , 39 , 44 Regarding validity, seven questionnaires (35%) assessed validity by asking patients if there were other aspects of care that were not mentioned in the questionnaires, 34 – 36 , 42 – 44 whereas only one questionnaire (5%) assessed internal consistency using Cronbach’s α with values of 0.74–0.87. 43 For acceptability, the time to complete the questionnaires ranged from 10 to 30 minutes, with nine studies (45%) reporting such data.…”