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.

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. © The European Society of Cardiology 2013.

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.

BACKGROUND: An implantable cardioverter defibrillator (ICD) is a technical device used in the treatment of ventricular arrhythmias. After an ICD implantation, the entire life situation of the patient their next of kin can be affected psychologically and socially. Healthcare professionals play a vital role in providing educational counselling, support and technical follow-up of the device, but little is known about their experiences.

AIM: This paper describes the experiences of Swedish healthcare professionals in delivering care to patients with an ICD.

METHODS: A qualitative, descriptive design based on a phenomenographic approach was used. Data were collected through interviews with 12 specialist ICD nurses and 12 physicians, representing 16 ICD implantation centres in Sweden.

FINDINGS: Two descriptive categories comprising seven subcategories emerged. Striving to provide competent care comprised the subcategories: providing access to care, improving one's qualifications and individualising care. Striving to infuse confirmation incorporated the subcategories: promoting independence, providing existential support, mediating security and comprising needs of next of kin.

CONCLUSIONS: The healthcare professionals described how they wished to develop the care further. Both nurses and physicians were consistent in wanting to provide competent and confirming care based on a holistic perspective with high accessibility to the ICD team. The findings describe how healthcare professionals strive to provide professional clinical care in order to give the patients tools to handle their life situation. They suggested that more structured education and counselling according to guidelines should be provided. They also highlighted the need to increase their own competence by improving their knowledge and skills.

Background: The implantable cardioverter defibrillator (ICD) deliver life saving therapy in patients who have survived sudden cardiac death (SCD) or are at such risk due to underlying heart condition. In spite of the life saving capacity of the ICD, eventually underlying heart disease, or a non-cardiac disease, will end the life of the patient. Around 30 % of all patients will experience one or multiple ICD shocks in the final weeks of their lives, adding to stress and anxiety in patients and their family.

Aim: To describe ICD patients´ conceptions on end-of-life (EOL) issues, with special reference to deactivation or non replacement of the ICD.

Material and Method: Data was collected during 2011 at five Swedish hospitals. The population consisted of 37 ICD recipients with the exclusion of those nearing EOL  or with terminal illness. The method was a manifest content analysis approach, based on interviews.

Results: The ICD recipients described how they lived with an uncertain illness trajectory, but had not reflected on possible course of events in the future. Lack of deeper understanding of the true lifesaving capacity during the illness trajectory was revealed. Most participants had an overall positive view and focused on the ICD as a way to avoid SCD and had not considered death by other causes. Discussions with the healthcare providers focusing on EOL issues had very seldom taken place. The participants had not reflected on EOL issues earlier; they considered the ICD as something that always should be there as a lifesaver. They wanted to postpone the discussion and decision about deactivation until the very end. When patients were asked to anticipate their preferences if they should be terminally ill, the majority stated that they would not choose to deactivate the ICD, even if they received multiple shocks. This was true for both patients with heart failure who received the ICD for primary prevention, as well as for those who already had survived a SCD.

Implication: Despite comprehensive guidelines relating to the issue of ICD and deactivation in EOL, complexities with implementation of the guidelines continue to be raised in clinical practice. Heart Rhythm Society recommend healthcare providers to stepwise discuss the question of deactivation of the ICD during the illness trajectory, the ultimate motivation being the risk for multiple shocks preventing a “peaceful” death. However, our results showed that this is not always the patient’s desire, and in clinical practice these discussions can be both challenging and raise an ethical dilemma. The postponement or total avoidance of the EOL discussion may ultimately lead to problems when death is imminent.

Conclusion: Deactivation or not replacing the ICD in terminal illness is seldom brought up for discussion with the healthcare providers. ICD recipients lack deeper understanding of the true life saving capacity of the device during their illness trajectory and tend not to think about EOL matters. Some patients choose not to make a decision at all; others want to prolong life at any price and others, still, face finality and reflect on existential issues. Many ICD recipients reach their final stage of disease unaware of the fact that they have a choice.

Aim.

To describe the clinical aspects of implantable cardioverter defibrillators care in Sweden with focus on organisation, the role and education of nurses, patient information and education and areas in need of improvement.

Background.

Implantable cardioverter defibrillators implantations have developed rapidly in recent years and are now an established arrhythmia treatment. The expanding indication for implantable cardioverter defibrillators implantation demands new competencies and resources in the implantable cardioverter defibrillators team members.

Methods.

Participants were recruited among physicians and nurses in all of the hospitals implanting implantable cardioverter defibrillators (n = 16). Data were collected by a questionnaire. Additionally, all written educational materials provided to patients pre- and postimplant were collected from all 16 hospitals. Deductive content analysis using Sarvimäki and Stenbock-Hult's five holistic dimensions was employed to ascertain how information was provided in brochures and information materials.

Results.

Half of the hospitals (n = 8) had nurse-based outpatient clinics and several others planned to introduce them. Three hospitals carried out distance follow-ups by means of tele-monitoring. The nurses had received specific implantable cardioverter defibrillators education from implantable cardioverter defibrillators companies and/or various university courses. The biophysical dimension dominated in the information material, while the emotional, intellectual and socio-cultural dimensions were scarcely described, and the spiritual-existential was not referred to at all.

Conclusion.

Holistic care of implantable cardioverter defibrillators patients can be achieved by means of a multidisciplinary implantable cardioverter defibrillators team and more patient-centred educational strategies. In Sweden, the organisation of implantable cardioverter defibrillators care and follow-up is developing towards more nurse-based clinics.

Relevance to clinical practice.

Development and implementation of structured care programmes with a more holistic approach can improve future implantable cardioverter defibrillators care. The content of the written educational materials need to be more holistic, rather than mainly focusing on the biophysical and technical aspects of living with an implantable cardioverter defibrillators.

Background:

ICD implantations have developed rapidly in recent years and is now an established arrhythmia treatment. The expanding indication for ICD implantation demands new competencies and resources in the ICD team members.

Objectives:

To describe the clinical aspects of Implantable Cardioverter Defibrillators (ICD) care in Sweden with focus on organisation, the role and education of nurses, patient information and education, and areas in need of improvement.

Methods:

Participants were recruited among physicians and nurses in all of the hospitals implanting ICDs (N=16). Data was collected by a questionnaire. The questionnaire was constructed based on a systematic literature review and then guided by an expert group with clinical and research expertise within the ICD area. The format was inspired by existing questionnaires on heart failure care. The questionnaire comprised of 23 questions, including both multiple choice questions and open questions. Additionally, all written educational materials provided to patients pre- and post-ICD implant were collected from all 16 hospitals. Deductive content analysis using Sarvimäki and Stenbock-Hult's five holistic dimensions was employed to ascertain how information was provided in brochures and information materials.

Results:

This study revealed variations in the organisation and follow-up of ICD patients between the different centres in Sweden. Half of the hospitals (n=8) had nurse-based outpatient clinics and several others planned to introduce them. Three hospitals carried out distance follow-ups by means of tele-monitoring. The nurses had received specific ICD education from ICD companies and/or various university courses. In all hospitals, ICD patients received verbal and written information both before and after implantation. The biophysical dimension dominated in the information material while the emotional, intellectual, and socio-cultural dimensions were scarcely described, and the spiritual- existential was not referred to at all. The majority of the ICD teams were in favour of the development of research and quality assurance by means of check lists, guidelines and the ICD-registry.

Conclusion:

Holistic care of ICD patients can be achieved by means of a multi-disciplinary ICD team and more patient-centred educational strategies. In Sweden, the organisation of ICD care and follow-up is developing towards more nurse-based clinics. The content of the written educational materials need to be more holistic, rather than mainly focusing on the biophysical and technical aspects of living with an ICD.

Background: An Implantable Cardioverter Defibrillator (ICD) is a technical device used in the treatment of ventricular arrhythmias. After the implantation of an ICD the entire life situation can be affected with psychological and social consequences for the patient and his/her next of kin. The healthcare professionals play a vital role in providing educational information, support, and technical follow-up of the device. During recent years more and more hospitals have introduced a more team based organisation where the physicians collaborate with specialised ICD nurses.

Aim: The overall aim of the thesis was to explore how patients with an ICD experienced their life situation and howhealthcare professionals described their experiences of delivering care to ICD patients.

Methods: The design was descriptive, combining both quantitative and qualitative approaches, and the data was collected from Sweden and the USA. The Uncertainty of Illness Scale (MUIS-C) and Quality of life Index (QLI) instruments were used to determine the level of uncertainty and satisfaction with life (I), in-depth interviews with a phenomenographic approach was used to describe how Swedish and US patients living with an ICD conceived their life situation (II, III) and how healthcare professionals’ experienced delivering care to patients with an ICD, (IV). Finally, to explore clinical aspects of ICD care in Sweden, the Delivery of ICD Questionnaire (DOIQ) was used to describe the healthcare professionals’ experiences and a content analysis was used to describe the written educational information material provided to patients (V).

Results: There were no differences in uncertainty between pre and post ICD implantation either in Swedish or the US patients. Satisfaction with life was significantly higher among US patients compared to Swedish patients both before and after ICD implantation within the health-functioning, socio-economic and psychological-spiritual domains. The Swedish ICD patients experienced a significantly higher satisfaction with life within the socioeconomic domain after 3 months. (I). The patients felt safe in having an ICD implanted, but the conceptions varied from seeing the device as a life saver to being worried about what could happen. Gratitude at having an ICD varied from happiness at being alive to something that was alien and disturbed the patient. Being more or less dependent included how patient experienced feelings from well-being to grief. Having a network varied from having sufficient support to loneliness. Having a belief in the future ranged from having confidence to look forward to resignation. Gaining awareness described patients’ adaptation to living with an ICD and limitations due to the ICD (II). The patients also underwent a transition from becoming aware of the restriction in the life situation through a process of adaption and having trust in the ICD. This phase was followed by a reorientation phase where they adapted to their life situation and the patient and his/her family regained of their lives (III). The healthcare professionals strove to provide competent and individualised care and infuse confirmation to the patients in form of information, education and support. They gave the patients tools to handle their life situation, through existential support and mediating security (IV). Half of the hospitals had nurse-based clinic and others planned to introduce them. Three hospitals performed follow-up in the form of remote home monitoring. The nurse had specific ICD education from ICD companies and/or various university courses. In the educational information material the biophysical dimensions dominated while the emotional dimension was scarcely described, and the spiritual-existential was not referred to at all (V).

Conclusions: This thesis offers a further contribution to the scholarly discussion about the relationship between technology and human existence and how to cope with this transition. Our studies revealed that the embodiment of the ICD reflects a merger of experiences about its presence and potential from both patients’ and healthcare professionals’ perspective. This research hopefully encourages healthcare professionals to carefully reflect on what it is like to live with an ICD and to consider practice improvement for the patients’ and the next of kin.

Objective: To describe healthcare professionals’ experiences of delivering care to patients with an Implantable Cardioverter Defibrillator (ICD).

Methods: A qualitative, descriptive design based on a phenomenographic approach. Data was collected between October and December 2007 through interviews with 24 healthcare professionals representing all 16 implanting ICD centres in Sweden.

Results: Two descriptive categories comprising seven subcategories emerged. Striving to provide competent care comprised: providing access to care, improving one’s quantifications, individualising care and Striving to infuse confirmation involved: promoting independence providing existential support, mediating security and comprising needs of next of kin.

Conclusion: The healthcare professional striving to provide competent and confirming care based on a holistic perspective. The results describe a variation of how healthcare professionals’ strive to be professional in clinical care in order to give the patient tools to handle their life situation.

Practice Implications: The findings from healthcare professionals’ experiences can complement studies from the patients’ perspective and are important when improving care or ICD patients. This study can serve as a base for developing and redefining holistic follow-up programmes for ICD patients.

The purpose of this paper is to describe how a selected group of United States patients with an implantable cardioverter-defibrillator perceived their life situation. A qualitative design based on the phenomenographic approach was chosen to describe the patients' conceptions of their life situation. Fourteen patients-eight men and six women, aged 21-84-were strategically selected to obtain as broad a variation as possible. The descriptive categories to emerge from the analysis of the interviews were trust, adaptability, and empowerment. The category labeled trust describes how patients trusted in the organization around them. The category labeled adaptability describes how patients adapted to living with an implantable cardioverter-defibrillator device. The category entitled empowerment describes how patients considered that they received support from family and friends as well as from health care professionals. This study suggests the need for a holistic intervention program comprising family, work, and leisure, focusing on patients' future life situation.