Lost in Translation

Mitar, Michael; Alba, Ana C.; MacIver, Jane; Ross, Heather J.

doi:10.1161/circheartfailure.112.967497

Cited by 12 publications

(7 citation statements)

References 36 publications

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“…Cardiologists and nurse practitioners who care for heart failure patients are uniquely suited to accept responsibility for initiating ICD deactivation discussions when discussing advance care directives or during end-of-life conversations. 5 …”

Section: Discussionmentioning

confidence: 99%

“…Deactivation of the ICD is legal and morally acceptable when it is consistent with patient goals. 5 An ICD can be easily deactivated by programming the device with a telemetry computer or using an external magnet to disable the defibrillator. Turning off the defibrillator will avoid unnecessary and painful shocks at end of life.…”

Section: Introductionmentioning

confidence: 99%

“… 8 Physicians may be misinformed about the role and function of the ICD or the legal and ethical implications of device withdrawal. 5 Additionally, there is a dearth of evidence about when and how heart failure patients want these discussions to occur. To address this issue, we conducted a qualitative study to determine patient awareness, preferences and timing of ICD deactivation discussions.…”

Section: Introductionmentioning

confidence: 99%

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

et al. 2016

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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.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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

et al. 2016

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“…Secondly, while studies show that many professional caregivers think that the possibility of future deactivation should be discussed in an early stage of the disease, 17 other studies report on barriers on actually engaging in such discussions. 17 Professional caregivers are often unsure about the right time to discuss deactivation, 18 sometimes feel like they do not have a sufficiently well-established relationship with the patient, 19 have too little time to accurately discuss deactivation, 18 find it difficult to predict the end of life, 20 or feel that talking about deactivation might be inappropriate, since the ICD was implanted to “safe lives.” 19 Also, a recent international survey study from the UK, conducted in 262 professionals caregivers, shows that professional caregivers who are physicians or American, and had initiated a deactivation discussion before, were more likely to discuss ICD deactivation. 21 This study also identifies that, even though only 30% of nurses were involved in ICD deactivation discussion, 81% of professional caregivers felt that nurses do have the necessary skills to start these conversations, and might therefore play a bigger role in informing patients about ICD deactivation.…”

Section: Discussionmentioning

confidence: 99%

Trends in time in the management of the implantable cardioverter defibrillator in the last phase of life: a retrospective study of medical records

Stoevelaar

Brinkman-Stoppelenburg

Driel

et al. 2019

European Journal of Cardiovascular Nursing

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Background: The implantable cardioverter defibrillator (ICD) might give unwanted shocks in the last month of life. Guidelines recommend deactivation of the ICD prior to death. Aims: The aims of this study were to examine trends in time (2007–2016) in how and when decisions are made about ICD deactivation, and to examine patient- and disease-related factors which may have influenced these decisions. In addition, care and ICD shock frequency in the last month of life of ICD patients are described. Methods: Medical records of a sample of deceased patients who had their ICD implanted in 1999–2015 in a Dutch university ( n = 308) or general ( n = 72) hospital were examined. Results: Median age at death was 71 years, and 88% were male. ICD deactivation discussions increased from 6% for patients who had died between 2007 and 2009 to 35% for patients who had died between 2013 and 2016. ICD deactivation rates increased in these periods from 16% to 42%. Presence of do-not-resuscitate (DNR) orders increased from 9% to 46%. Palliative care consultations increased from 0% to 9%. When the ICD remained active, shocks were reported for 7% of patients in the last month of life. Predictors of ICD deactivation were the occurrence of ICD deactivation discussions after implantation (OR 69.30, CI 26.45–181.59), DNR order (OR 6.83, CI 4.19–11.12), do-not-intubate order (OR 6.41, CI 3.75–10.96), and palliative care consultations (OR 8.67, CI 2.76–27.21) Conclusion: ICD deactivation discussions and deactivation rates have increased since 2007. Nevertheless, ICDs remain active in the majority of patients at the end of life, some of whom experience shocks.

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“…However, healthcare professionals struggle with such discussions, while many patients indicate that they want to be informed about this topic [ 6 ]. Some research has described the potential barriers healthcare professionals experience to discussing ICD deactivation [ 7 – 9 ]. These include having too little experience or knowledge with regard to talking about deactivation [ 10 – 16 ], not feeling comfortable discussing the topic [ 14 , 17 – 20 ], a predominant focus on cure and on the benefits of ICD therapy [ 10 , 12 , 18 , 21 , 22 ], having too little time to hold this conversation [ 12 , 18 , 19 , 21 ], uncertainty about predicting patients’ disease trajectory [ 10 , 12 , 13 , 21 ], being afraid of taking away hope [ 10 , 12 , 13 , 19 , 21 ], not knowing at what stage this conversation is appropriate [ 10 ], not knowing who is responsible for these conversations [ 10 , 15 ], a lack of multidisciplinary cooperation [ 18 ], and a stressful work environment and high workload [ 23 ].…”

Section: Difficulties In Discussing Icd Deactivationmentioning

confidence: 99%

Implantable cardioverter defibrillators at the end of life: future perspectives on clinical practice

Stoevelaar

Brinkman-Stoppelenburg

Bruchem-Visser

et al. 2020

Neth Heart J

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The implantable cardioverter defibrillator (ICD) is effective in terminating life-threatening arrhythmias. However, in the last phase of life, ICD shocks may no longer be appropriate. Guidelines recommend timely discussion with the patient regarding deactivation of the shock function of the ICD. However, research shows that such conversations are scarce, and some patients experience avoidable and distressful shocks in the final days of life. Barriers such as physicians’ lack of time, difficulties in finding the right time to discuss ICD deactivation, patients’ reluctance to discuss the topic, and the fragmentation of care, which obscures responsibilities, prevent healthcare professionals from discussing this topic with the patient. In this point-of-view article, we argue that healthcare professionals who are involved in the care for ICD patients should be better educated on how to communicate with patients about ICD deactivation and the end of life. Optimal communication is needed to reduce the number of patients experiencing inappropriate and painful shocks in the terminal stage of their lives.

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Lost in Translation

Cited by 12 publications

References 36 publications

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

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

Trends in time in the management of the implantable cardioverter defibrillator in the last phase of life: a retrospective study of medical records

Implantable cardioverter defibrillators at the end of life: future perspectives on clinical practice

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