Patients' perception of implantable cardioverter defibrillator deactivation at the end of life

Loreena Hill; Sonja McIlfatrick; Brian Taylor; Lana Dixon; Mark Harbinson; Donna Fitzsimons

doi:10.1177/0269216314550374

Patients' perception of implantable cardioverter defibrillator deactivation at the end of life

Palliat Med. 2015 Apr;29(4):310-23. doi: 10.1177/0269216314550374. Epub 2014 Sep 19.

Authors

Loreena Hill¹, Sonja McIlfatrick², Brian Taylor³, Lana Dixon⁴, Mark Harbinson⁴, Donna Fitzsimons⁵

Affiliations

¹ Institute of Nursing Research, University of Ulster, Jordanstown Campus, Newtownabbey, UK Belfast Health and Social Care Trust, Belfast, UK Hill-L3@email.ulster.ac.uk.
² Institute of Nursing Research, University of Ulster, Jordanstown Campus, Newtownabbey, UK All Ireland Institute of Hospice & Palliative Care, Dublin, Ireland.
³ Institute of Nursing Research, University of Ulster, Jordanstown Campus, Newtownabbey, UK.
⁴ Belfast Health and Social Care Trust, Belfast, UK.
⁵ Institute of Nursing Research, University of Ulster, Jordanstown Campus, Newtownabbey, UK Belfast Health and Social Care Trust, Belfast, UK All Ireland Institute of Hospice & Palliative Care, Dublin, Ireland.

PMID: 25239128
DOI: 10.1177/0269216314550374

Abstract

Background: Individualised care at the end of life requires professional understanding of the patient's perception of implantable cardioverter defibrillator deactivation.

Aim: The aim was to evaluate the evidence on patients' perception of implantable cardioverter defibrillator deactivation at end of life.

Design: Systematic narrative review of empirical studies was published during 2008-2014.

Data sources: Data were collected from six databases, citations from relevant articles and expert recommendations.

Results: In all, 18 studies included with collective population of n = 5810. Concept mapping highlighted three themes: (1) Diverse preferences regarding discussion and deactivation. Deactivation was rarely discussed pre-implantation, with some studies demonstrating patients' reluctance to discuss implantable cardioverter defibrillator deactivation at any stage. Two studies found the majority of patients valued such discussions. Diversity was reflected in patients' willingness to deactivate, ranging from 12% (n = 9) in Irish cohort to 79% (n = 195) in Dutch study. (2) Ethical and legal considerations were predominant in Canadian and American literature as patients wanted to contribute but felt the decision should be a doctor's responsibility. Advance directives were uncommon in Europe, and where they existed the implantable cardioverter defibrillator was not mentioned. (3) 'Living in the now' was evident as despite deteriorating symptoms many patients maintained a positive outlook and anticipated surviving more than 10 years. Several studies asserted living longer was more important than quality of life.

Conclusion: Patients regard the implantable cardioverter defibrillator as a complex and solely beneficial device, with little insight regarding its potential impact on a peaceful death. This review confirms the need for professionals to discuss with patients and families implantable cardioverter defibrillator functionality and deactivation at appropriate opportunities.

Keywords: Review; decision-making; defibrillators; implantable; systematic; terminal care.

Publication types

Research Support, Non-U.S. Gov't
Review
Systematic Review

MeSH terms

Attitude to Health*
Communication
Defibrillators, Implantable*
Empirical Research
Humans
Patient Preference
Perception
Physician-Patient Relations
Quality of Life
Terminal Care*