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- Fluur, Christina, et al.
(författare)
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Patients' experiences of the implantable cardioverter defibrillator (ICD); with a focus on battery replacement and end-of-life issues
- 2013
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Ingår i: Heart & Lung. - Philadelphia, PA : Mosby. - 0147-9563 .- 1527-3288. ; 42:3, s. 202-207
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Tidskriftsartikel (refereegranskat)abstract
- Background: ICD deactivation at end-of-life is technically uncomplicated. However, it may present a psychological challenge to healthcare professionals, patients, and next-of-kin. Objective: This study explored patients' experiences of complex issues of battery replacement and deactivation of the ICD. Methods: Semistructured interviews were administered to 37 medically stable ICD-recipients. Results: The ICD-recipients lived with an uncertain illness trajectory, but the majority had not reflected on battery replacement or elective ICD deactivation. Healthcare professionals had rarely discussed these issues with patients. However, this was consistent with the ICD-recipients' wishes. Many patients had misconceptions about the lifesaving capacity of the ICD and the majority stated that they would not choose to deactivate the ICD, even if they knew they were terminally ill, and it meant they would receive multiple shocks. Conclusion: The ICD-recipients tended not to think about end-of-life issues, which imply that many patients reach the final stages of life unaware of the option of ICD deactivation. © 2013 Elsevier Inc.
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| 2. |
- Fluur, Christina, et al.
(författare)
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Spouses’ reflections on Implantable Cardioverter Defibrillator treatment with focus on the future and the end-of-life : a qualitative content analysis
- 2014
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Ingår i: Journal of Advanced Nursing. - Chichester, West Sussex : Wiley-Blackwell. - 0309-2402 .- 1365-2648. ; 70:8, s. 1758-1769
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Tidskriftsartikel (refereegranskat)abstract
- Aim. To explore future reflections of spouses living with an implantable cardioverter defibrillator recipient with focus on the end-of-life phase in an anticipated palliative phase.Background. A history of or risk for life-threatening arrhythmias may require an implantable cardioverter defibrillator. Despite the life-saving capacity of the device, eventually life will come to an end. As discussion about preferences of shock therapy at end-of-life phase seldom takes place in advance, the implantable cardioverter defibrillator recipients may face defibrillating shocks in the final weeks of their lives, adding to stress and anxiety in patients and their families.Design. Qualitative study with in-depth interviews analysed with a content analysis.Methods. Interviews were performed with 18 spouses of medically stable implantable cardioverter defibrillator recipients during 2011–2012.Results. The spouses described how they dealt with changes in life and an uncertain future following the implantable cardioverter defibrillator implantation. Six subcategories conceptualized the spouses' concerns: Aspiring for involvement; Managing an altered relationship; Being attentive to warning signs; Worries for deterioration in the partner's health; Waiting for the defibrillating shock; and Death is veiled in silence.Conclusion. Despite the partner's serious state of health; terminal illness or death and the role of the device was seldom discussed with healthcare professionals or the implantable cardioverter defibrillator recipient. Open and honest communication was requested as important to support coping with an unpredictable life situation and to reduce worries and uncertainty about the future and end-of-life. © 2013 John Wiley & Sons Ltd.
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| 3. |
- Strömberg, Anna, et al.
(författare)
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ICD Recipients Understanding of Ethical Issues, ICD Function, and Practical Consequences of Withdrawing the ICD in the End-of-Life
- 2014
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Ingår i: Pacing and Clinical Electrophysiology. - : Wiley-Blackwell. - 0147-8389 .- 1540-8159. ; 37:7, s. 834-842
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Tidskriftsartikel (refereegranskat)abstract
- Background: The current international expert consensus statements recommend that clinicians should discuss elective implantable cardioverter defibrillator (ICD) deactivation before implantation of the device, and then consistently during the illness trajectory. However, no previous studies have investigated predictors of ICD patients knowledge about end-of-life issues or whether knowledge influences patients attitudes about deactivation. Methods: This nationwide survey study (n = 3,067) had a cross-sectional correlational design of self-reported data. Participants were recruited from the Swedish ICD and Pacemaker Registry and asked to complete a questionnaire about knowledge in relation to the ICD and end-of-life. Results: Only 79 respondents (3%) scored correctly on all 11 questions. The mean sample score was 6.6 +/- 2.7 out of a maximum score of 11. A total of 835 participants (29%) had an insufficient knowledge when using the 25th percentile as a cutoff. Younger ICD recipients, those cohabiting, male participants, and those who had received shocks, had a generator replacement, or who had discussed illness trajectory with their physician were more likely to have sufficient knowledge on the end-of-life issues. Insufficient knowledge was associated with indecisiveness to make decisions about ICD deactivation in the end-of-life situations, and with favorable attitudes about replacing the ICD even if seriously ill or have reached an advanced age, and keeping the shock therapy of the ICD even in a terminal phase of life when dying from cancer or other serious chronic illnesses. Conclusion: Insufficient knowledge is common among ICD recipients and is associated with attitudes and decisions that may result in a stressful and potentially painful end-of-life situation.
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| 4. |
- Thylén, Ingela, et al.
(författare)
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Are ICD recipients able to foresee if they want to withdraw therapy or deactivate defibrillator shocks?
- 2013
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Ingår i: IJC Heart & Vessles. - : Elsevier. - 2214-7632. ; 1, s. 22-31
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundExpert consensus statements on management of implantable cardioverter defibrillators (ICDs) emphasize the importance of having discussions about deactivation before and after implantation. These statements were developed with limited patient input. The purpose of this study was to identify the factors associated with patients' experiences of end-of-life discussions, attitudes towards such discussions, and attitudes towards withdrawal of therapy (i.e., generator replacement and deactivation) at end-of-life, in a large national cohort of ICD-recipients.MethodsWe enrolled 3067 ICD-patients, administrating the End-of-Life-ICD-Questionnaire.ResultsMost (86%) had not discussed ICD-deactivation with their physician. Most (69%) thought discussions were best at end-of-life, but 40% stated that they never wanted the physician to initiate a discussion. Those unwilling to discuss deactivation were younger, had experienced battery replacement, had a longer time since implantation, and had better quality-of-life. Those with psychological morbidity were more likely to desire a discussion about deactivation. Many patients (39%) were unable to foresee what to decide about deactivation in an anticipated terminal condition. Women, those without depression, and those with worse ICD-related experiences were more indecisive about withdrawal of therapy. Irrespective of shock experiences, those who could take a stand regarding deactivation chose to keep shock therapies active in many cases (39%).ConclusionsDespite consensus statements recommending discussions about ICD-deactivation at the end-of-life, such discussion usually do not occur. There is substantial ambivalence and indecisiveness on the part of most ICD-patients in this nationwide survey about having these discussions and about expressing desires about deactivation in an anticipated end-of-life situation.
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| 5. |
- Thylén, Ingela, et al.
(författare)
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Development and evaluation of the EOL-ICDQ as a measure of experiences, attitudes and knowledge in end-of-life in patients living with an implantable cardioverter defibrillator
- 2014
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Ingår i: European Journal of Cardiovascular Nursing. - London, United Kingdom : Oxford University Press (OUP). - 1474-5151 .- 1873-1953. ; 13:2, s. 142-151
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Tidskriftsartikel (refereegranskat)abstract
- Background: Due to extended indications and resynchronization therapy, many implantable cardioverter defibrillator (ICD) recipients will experience progressive co-morbid conditions and will be more likely to die of causes other than cardiac death. It is therefore important to elucidate the ICD patients' preferences when nearing end-of-life. Instead of avoiding the subject of end-of-life, a validated questionnaire may be helpful to explore patients' experiences and attitudes about end-of-life concerns and to assess knowledge of the function of the ICD in end-of-life. Validated instruments assessing patients' perspective concerning end-of-life issues are scarce. Aim: The purpose of this study was to develop and evaluate respondent satisfaction and measurement properties of the Experiences, Attitudes and Knowledge of End-of-Life Issues in Implantable Cardioverter Defibrillator Patients' Questionnaire' (EOL-ICDQ). Methods: The instrument was tested for validity, respondent satisfaction, and for homogeneity and stability in the Swedish language. An English version of the EOL-ICDQ was validated, but has not yet been pilot tested. Results: The final instrument contained three domains, which were clustered into 39 items measuring: experiences (10 items), attitudes (18 items), and knowledge (11 items) of end-of-life concerns in ICD patients. In addition, the questionnaire also contained items on socio-demographic background (six items) and ICD-specific background (eight items). The validity and reliability properties were considered sufficient. Conclusions: The EOL-ICDQ has the potential to be used in clinical practice and future research. Further studies are needed using this instrument in an Anglo-Saxon context with a sample of English-speaking ICD recipients.
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