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

Standing, Holly, Exley, Catherine, Flynn, Darren, Hughes, Julian, Joyce, Kerry, Lobban, Trudie, Lord, Stephen, Matlock, Daniel, McComb, Janet, Paes, Paul and Thomson, Richard G. (2016) A qualitative study of decision-making about the implantation of cardioverter defibrillators and deactivation during end-of-life care. Health Services and Delivery Research, 4 (32). pp. 1-150. ISSN 2050-4349

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Official URL: https://doi.org/10.3310/hsdr04320


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.

Item Type: Article
Additional Information: Funding information: The research reported in this issue of the journal was funded by the HS&DR programme or one of its preceding programmes as project number 11/2004/29. The contractual start date was in May 2013. The final report began editorial review in December 2015 and was accepted for publication in July 2016. The authors have been wholly responsible for all data collection, analysis and interpretation, and for writing up their work. The HS&DR editors and production house have tried to ensure the accuracy of the authors’ report and would like to thank the reviewers for their constructive comments on the final report document. However, they do not accept liability for damages or losses arising from material published in this report. This report presents independent research funded by the National Institute for Health Research (NIHR). The views and opinions expressed by authors in this publication are those of the authors and do not necessarily reflect those of the NHS, the NIHR, NETSCC, the HS&DR programme or the Department of Health. If there are verbatim quotations included in this publication the views and opinions expressed by the interviewees are those of the interviewees and do not necessarily reflect those of the authors, those of the NHS, the NIHR, NETSCC, the HS&DR programme or the Department of Health. © Queen’s Printer and Controller of HMSO 2016. This work was produced by Standing et al. under the terms of a commissioning contract issued by the Secretary of State for Health. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK.
Subjects: A900 Others in Medicine and Dentistry
Department: Faculties > Health and Life Sciences > Nursing, Midwifery and Health
Faculties > Health and Life Sciences > Social Work, Education and Community Wellbeing
Depositing User: Ay Okpokam
Date Deposited: 14 Feb 2017 10:00
Last Modified: 10 Nov 2021 10:15
URI: http://nrl.northumbria.ac.uk/id/eprint/29650

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