“That’s Like an Act of Suicide” Patients’ Attitudes Toward Deactivation of Implantable Defibrillators

Goldstein, Nathan E.; Mehta, Davendra; Siddiqui, S.; Teitelbaum, Ezra N.; Zeidman, Jessica; Singson, Magdelena; Pe, Elena; Bradley, Elizabeth H.; Morrison, R. Sean

doi:10.1007/s11606-007-0239-8

Cited by 152 publications

(165 citation statements)

References 28 publications

(27 reference statements)

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“…97 Qualitative studies have shown that patients may not fully understand how their ICDs work and develop complex psychological relationships with their devices that may contribute to a reluctance to deactivate the ICDs. 98 For end-stage heart failure patients, deactivation of ICDs when death is near is advisable to avoid repeated shocks in a dying patient. Particular care should be taken to make sure that such dialogue occurs early on, while the patient is still capable of participating in the discussion, and that it is clearly documented in the medical record.…”

Section: Icds and Cardiac Resynchronization Therapymentioning

confidence: 99%

Palliative Care in the Treatment of Advanced Heart Failure

et al. 2009

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H eart failure is epidemic in developed countries and is expanding rapidly worldwide. Roughly 5% of patients with heart failure have end-stage disease that is refractory to medical therapy (stage D heart failure). 1 Palliative care consultation relieves symptoms, improves patient satisfaction, and decreases the costs of care for these patients. Despite this, only a small fraction of end-stage heart failure patients receive palliative care consultation. In recognition of this, palliative/hospice care referral was recommended for endstage heart failure (Level of Evidence 1A) in the most recent American College of Cardiology/American Heart Association heart failure guidelines. 2 To identify evidence-based studies of palliative care in heart failure, we searched the Medline database for literature with the medical subject headings "heart failure" and "palliative care," "supportive care," or "symptom management" and found 394 results. We identified 92 systematic reviews, 44 of which were English-language systematic reviews published within the past 5 years.

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Section: Icds and Cardiac Resynchronization Therapymentioning

confidence: 99%

Palliative Care in the Treatment of Advanced Heart Failure

et al. 2009

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“…general practitioner (GP), cardiologist, heart failure nurse, palliative care clinician] they receive this information. 6,13,14 Little is known about how patients make sense of information about ICDs and what patients' information needs and preferences are with respect to implantation and deactivation. 5,6,15,16 By documenting current decision-making throughout the care pathway, and by exploring patients', family members' and clinicians' views of decision-making, we have addressed these knowledge gaps to help determine how to better support SDM about ICD implantation and deactivation.…”

Section: Methodsmentioning

confidence: 99%

“…11,14 Reasons for clinicians failing to initiate deactivation conversations were: a lack of knowledge about ICD function; poor quality doctor-patient relationships; the assumption that responsibility for discussing deactivation lies elsewhere; erroneous beliefs that patients are already aware that the device can be deactivated; and the belief that clinicians can accurately predict which patients will experience shock (and distress) towards the end of life. 11,24 This research suggests a level of unease around initiating deactivation discussions.…”

Section: Structure Of the Reportmentioning

confidence: 99%

A qualitative study of decision-making about the implantation of cardioverter defibrillators and deactivation during end-of-life care

Standing

Exley

Flynn

et al. 2016

Health Serv Deliv Res

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Background Implantable cardioverter defibrillators (ICDs) are recommended for patients at high risk of sudden cardiac death or for survivors of cardiac arrest. All ICDs combine a shock function with a pacing function to treat fast and slow heart rhythms, respectively. The pacing function may be very sophisticated and can provide so-called cardiac resynchronisation therapy for the treatment of heart failure using a pacemaker (cardiac resynchronisation therapy with pacemaker) or combined with an ICD [cardiac resynchronisation therapy with defibrillator (CRT-D)]. Decision-making about these devices involves considering the benefit (averting sudden cardiac death), possible risks (inappropriate shocks and psychological problems) and the potential need for deactivation towards the end of life. Objectives To explore patients’/relatives’ and clinicians’ views/experiences of decision-making about ICD and CRT-D implantation and deactivation, to establish how and when ICD risks, benefits and consequences are communicated to patients, to identify individual and organisational facilitators and barriers to discussions about implantation and deactivation and to determine information and decision-support needs for shared decision-making (SDM). Data sources Observations of clinical encounters, in-depth interviews and interactive group workshops with clinicians, patients and their relatives. Methods Observations of consultations with patients being considered for ICD or CRT-D implantation were undertaken to become familiar with the clinical environment and to optimise the sampling strategy. In-depth interviews were conducted with patients, relatives and clinicians to gain detailed insights into their views and experiences. Data collection and analysis occurred concurrently. Interactive workshops with clinicians and patients/relatives were used to validate our findings and to explore how these could be used to support better SDM. Results We conducted 38 observations of clinical encounters, 80 interviews (44 patients/relatives, seven bereaved relatives and 29 clinicians) and two workshops with 11 clinicians and 11 patients/relatives. Patients had variable knowledge about their conditions, the risk of sudden cardiac death and the clinical rationale for ICDs, which sometimes resulted in confusion about the potential benefits. Clinicians used various metaphors, verbal descriptors and numerical risk methods, including variable disclosure of the potential negative impact of ICDs on body image and the risk of psychological problems, to convey information to patients/relatives. Patients/relatives wanted more information about, and more involvement in, deactivation decisions, and expressed a preference that these decisions be addressed at the time of implantation. There was no consensus among clinicians about the initiation or timing of such discussions, or who should take responsibility for them. Introducing deactivation discussions prior to implantation was thus contentious; however, trigger points for deactivation discussions embedded within the pathway were suggested to ensure timely discussions. Limitations Only two patients who were prospectively considering deactivation and seven bereaved relatives were recruited. The study also lacks the perspectives of primary care clinicians. Conclusions There is discordance between patients and clinicians on information requirements, in particular the potential consequences of implantation on psychological well-being and quality of life in the short and long term (deactivation). There were no agreed points across the care pathway at which to discuss deactivation. Codesigned information tools that present balanced information on the benefits, risks and consequences, and SDM skills training for patients/relative and clinicians, would support better SDM about ICDs. Future work Multifaceted SDM interventions that focus on skills development for SDM combined with decision-support tools are warranted, and there is a potential central role for heart failure nurses and physiologists in supporting and preparing patients/relatives for such discussions. Funding The National Institute for Health Research Health Services and Delivery Research programme.

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“…However, we found that both the experience of fear and anticipation is elevated in patients after receiving the ICD. Fear of future shocks has been reported, regardless of whether patients had experienced a shock from the ICD [35] . The experience of fear has been reported to be increased when measured three and twelve months after implantation of an ICD [36] .…”

Section: The Intensity Of the Primary Emotionsmentioning

confidence: 99%

Intensity of primary emotions in patients after implantation of an implantable cardioverter defibrillator

Støier

Pedersen²,

Berg

2013

JNEP

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Background: Experienced emotions can affect the outcome of, and adherence to a cardiac rehabilitation program, and patients coping with an illness. With more awareness of the expressed emotions, health professionals might be better able to understand the reactions of patients and to improve the support needed for coping. Living with an Implantable Cardioverter Defibrillator can lead to anxiety and depression. Focus on the intensity of the primary emotions might be a potential to prevent development of these psychological states.Objectives: The aim of this paper are 1) to describe the intensity of primary emotions in patients after implantation of an Implantable Cardioverter Defibrillator and 2) to compare them with both the intensity of primary emotions in patients with a recent Myocardial Infarction and with a healthy population. Method:The intensity of primary emotions in patients receiving an Implantable Cardioverter Defibrillator was measured by a survey using the Emotions and Health Scale. The survey was carried out as part of a randomized clinical trial the COPE-ICD trial (ID: NCT00569478) and is regarded as post-hoc explorative analysis. All data were collected from October 2007-November 2009. A total number of 154 patients were needed in the trial. The data collected were compared with secondary data from patients who had recently suffered a Myocardial Infarction and from a healthy population. SPSS version 18.0 was used to analyze the data using t-test, chisquare and F-test. Results:One hundred and ninety-six patients were invited to fill in the questionnaire. It was completed by 182, a response rate of 93 %. Patients with a newly implanted Implantable Cardioverter Defibrillator experienced an increased intensity of joy, sadness, disgust, anticipation, anger, fear and surprise. No difference was found regarding the intensity of the primary emotions when the group of patients was divided according to occupation or age. A significant increase in the negative emotions sadness, disgust, anger and surprise was observed in women and in patients who receive the Implantable Cardioverter Defibrillator as a secondary prevention. The combination of increased senses of fear and surprise is unique to patients receiving an Implantable Cardioverter Defibrillator. The intensity of the primary emotions in patients with a newly implanted Cardioverter Defibrillator was comparable to the intensity in patients with a myocardial infarction, but the experience of anticipation and fear was markedly increased in patients with an Implantable Cardioverter Defibrillator. Conclusion:Women and patients who receive an Implantable Cardioverter Defibrillator as secondary prevention experience a significant increase in the negative emotions sadness, disgust, anger and surprise.

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“That’s Like an Act of Suicide” Patients’ Attitudes Toward Deactivation of Implantable Defibrillators

Cited by 152 publications

References 28 publications

Palliative Care in the Treatment of Advanced Heart Failure

Palliative Care in the Treatment of Advanced Heart Failure

A qualitative study of decision-making about the implantation of cardioverter defibrillators and deactivation during end-of-life care

Intensity of primary emotions in patients after implantation of an implantable cardioverter defibrillator

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