Refusing Implantable Cardioverter Defibrillator (ICD) Replacement in Elderly Persons-The Same as Giving Up Life: A Qualitative Study

Svanholm, Jette; Nielsen, Jens Cosedis; Mortensen, Peter Thomas; Christensen, Charlotte Fuglesang; Birkelund, Regner

doi:10.1111/pace.12702

Cited by 8 publications

(8 citation statements)

References 36 publications

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“…Some studies had also highlighted the lack of consistency in the information given by various healthcare professionals [12, 38]. A qualitative study by Svanholm et al [48] revealed that some of the octogenarians were unsure if they had suffered shocks throughout their lives because of misunderstandings on shocks. Evidently, incomplete patient education could result in participants’ misinterpretations on their conditions.…”

Section: Resultsmentioning

confidence: 99%

“…Nevertheless, the poor understanding or the lack of knowledge in ICD deactivation in both studies revealed a lack of awareness regarding end-of-life planning. Similarly, qualitative findings also reported that most of the participants interviewed expressed unawareness of the option for ICD deactivation and that some even had the misconception of equating deactivation to euthanasia [11, 48]. Furthermore, another study conducted by Stromberg et al [29] on 3067 participants reported that only 3% had full scores on the Experiences, Attitudes, and Knowledge of End-of-Life Issues in ICD (EOL-ICD), with 29% in the 25th percentile.…”

Section: Resultsmentioning

confidence: 99%

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Perceptions and experiences of patients living with implantable cardioverter defibrillators: a systematic review and meta-synthesis

Ooi

Dong

et al. 2016

Health Qual Life Outcomes

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BackgroundSudden cardiac deaths have become a growing major public health concern that affects the world. Despite the various etiologies, life-threatening cardiac arrhythmias attribute the main cause of sudden cardiac deaths. Therefore in certain groups of high-risk patients, the Implantable Cardioverter Defibrillator (ICD) has been recommended as either a secondary or primary prophylactic method of prevention.ObjectiveTo summarise the perceptions of ICD recipients and provide an overview of their experiences with regards to the quality of life, coping strategies, and learning needs.MethodsA systematic search was conducted using CINAHL, MEDLINE, PsycINFO, Scopus, Cochrane Library, and Web of Science. Primary research articles published from January 2005 to January 2016 that met the inclusion criteria were selected and assessed for methodological quality.ResultsThirty-nine articles consisting of 16 qualitative studies, 22 quantitative studies, and 1 mixed methods study were included for the meta-synthesis. Findings extracted from these studies were grouped into eight subthemes with ‘living the ICD experience: a constant process of redefining oneself’ emerging as an over-arching theme.ConclusionThis review provides insight into the perspectives and experiences of ICD recipients. Current evidence highlights the need for healthcare professionals to improve future care standards and develop a patient-centric holistic program that meets the specific needs of ICD recipients. Moreover, future studies are required to address the research gaps identified and also explore the perceptions of patients living with ICD in the Asian context.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Perceptions and experiences of patients living with implantable cardioverter defibrillators: a systematic review and meta-synthesis

Ooi

Dong

et al. 2016

Health Qual Life Outcomes

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“…Physicians are ethically and legally obliged to ensure that patients are informed and, above all, involved in the decisions regarding their treatment options. Healthcare professionals are formally obligated to respect their patients' needs and autonomy, even when there seem to be no other options (Health Quality Ontario, ; Svanholm, Nielsen, Mortensen, Christensen, & Birkelund, ). Because our participants' perception of the importance of accepting an ICD was influenced by the inherent difficulties physicians have in communicating risks, treatment options, and prognoses, we believe further studies are urgently needed on the best approaches and minimum set of information patients need to face the difficulties of living with the ICD.…”

Section: Discussionmentioning

confidence: 99%

“…Because our participants' perception of the importance of accepting an ICD was influenced by the inherent difficulties physicians have in communicating risks, treatment options, and prognoses, we believe further studies are urgently needed on the best approaches and minimum set of information patients need to face the difficulties of living with the ICD. This is particularly important when physicians are called to share information on the impact and consequences of the device on their patients' lives, particularly for young patients and in those diagnosed with a hereditary disorder (Stewart et al, ; Svanholm et al, ).…”

Section: Discussionmentioning

confidence: 99%

“Hosting” an implantable cardioverter defibrillator: A phenomenological inquiry

Garrino¹,

Borraccino²,

Peraudo³

et al. 2017

Research in Nursing & Health

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Implantable cardioverter defibrillators (ICDs) can reduce unexpected cardiac mortality, but they also have a dramatic impact on a patient's quality of life. We aimed to explore ICD recipients' experiences in order to foster improvements in the quality of care.Analyses were done using a descriptive phenomenological method, based on qualitative interview data from a purposive sample of 20 ICD recipients. Four main themes emerged: living with fear; relying on technology; knowing about the ICD and how to live with it; and coping with the effects of the ICD on daily life. ICD recipients lived in a constant state of fear due to the presence of the device and the uncertainty related to the potential electrical shocks it could deliver. This fear was compounded by changes that severely affected the quality of their daily life. ICD recipients felt they were always on the brink of death, and that although they received sufficient technical information they did not feel they received meaningful information to help them accept, live with, and cope with the device. Emotional information and support, rather than technical information, must be provided to ICD recipients to give them the ability to cope with the everyday threats they perceive because of the device. Qualitative evidence may help professionals tackle known threats to patients' quality of life and increase the quality of care. K E Y W O R D Simplantable cardioverter defibrillator, patients' lived experience, phenomenological approach, qualitative methodology

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“…Research authors suggest that patients have limited understanding of how cardiac devices impact overall disease management, often overestimating the potential benefits of the device. 11,12 Patients and families are then predictably reluctant to consider deactivation of ICDs, although, by failing to do so, they may increase suffering at the end of life. This problem is compounded by poor physician adherence to recommendations regarding the need for advance care planning before device implantation.…”

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confidence: 99%

“Why Would I Choose Death?”

et al. 2019

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Background Although cardiology organizations recommend early introduction of palliative care for patients with heart failure (HF), integration has remained challenging, particularly in patients with cardiac devices such as cardiac implantable electronic devices and left ventricular assist devices. Study authors suggest that patients often have limited and erroneous understanding of these devices and their implications for future care. Objective The aim of this study was to assess perceptions of cardiac devices in patients with HF and how these perceptions impacted advance care planning and future expectations. Methods This study used qualitative semistructured interviews with 18 community-dwelling patients with New York Heart Association stage II to IV HF. Results We interviewed 18 patients (mean ejection fraction, 38%; mean age, 64 years; 33% female; 83% white; 39% New York Heart Association class II, 39% class III, and 22% class IV). All had a cardiac implantable electronic device (6% permanent pacemaker, 56% implantable cardioverter-defibrillator, 28% biventricular implantable cardioverter-defibrillator); 11% had left ventricular assist devices. Patients with devices frequently misunderstood the impact of their device on cardiac function. A majority expressed the belief that the device would forestall further deterioration, regardless of whether this was the case. This anticipation of stability was often accompanied by the expectation that emerging technologies would continue to preempt decline. Citing this faith in technology, these patients frequently saw limited value in advance care planning. Conclusions In our sample, patients with cardiac devices overestimated the impact of their devices on preventing disease progression and death and deprioritized advance care planning as a result.

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Refusing Implantable Cardioverter Defibrillator (ICD) Replacement in Elderly Persons-The Same as Giving Up Life: A Qualitative Study

Cited by 8 publications

References 36 publications

Perceptions and experiences of patients living with implantable cardioverter defibrillators: a systematic review and meta-synthesis

Perceptions and experiences of patients living with implantable cardioverter defibrillators: a systematic review and meta-synthesis

“Hosting” an implantable cardioverter defibrillator: A phenomenological inquiry

“Why Would I Choose Death?”

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