Missed opportunities! End of life decision making and discussions in implantable cardioverter defibrillator recipients
Introduction
Implantable cardioverter defibrillators (ICDs) are the main therapy for primary and secondary prevention of sudden cardiac arrest.1, 2 Approximately 737,840 new ICD implantations and 264,824 generator replacements are performed annually worldwide.3, 4 Many of these devices are implanted in individuals with heart failure (HF) because sudden dysrhythmic death is a common cause of death in HF.2 As sudden cardiac death becomes less likely in HF patients with an ICD, most will die from progression of HF or from another terminal illness. Even among patients with an ICD and without HF, death from a non-cardiac terminal illness is likely. Mean life expectancy following ICD implantation is 2.5 years.2 Approximately 33% of ICD recipients receive a shock while actively dying, which may lead to unnecessary prolongation and poor quality of the death experience.5
Recent guidelines for management of patients with ventricular dysrhythmias and prevention of sudden cardiac death by the American College of Cardiology/American Heart Association/Heart Rhythm Society (ACC/AHA/HRS) recommend that clinicians begin discussions at time of implantation with ICD recipients regarding end-of-life (EOL) choices. These discussions should include generator replacement and withdrawal of defibrillation therapy in the context of terminal illness and be based on patient preferences and values at the time.6 Such discussions are necessary for fully informed consent, greater patient, family and provider satisfaction with the care process, and fully informed decision-making with regard to EOL choices.
The decision-making process is strongly affected by health literacy levels. Health literacy is defined as the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.7 Inadequate health literacy impairs one's ability to assess risk versus benefit information, participate in plans of treatment, fully engage in self-care, and communicate choices.8 Inadequate health literacy affects the ability to fully understand EOL care options. The main goal of EOL decision making is to explore an individual's values and preferences for care based upon a full understanding of all of the options. Ensuring that individuals and families have a complete understanding of EOL care options may improve the quality of the death experience allowing for death with dignity that is congruent with beliefs and values system. Therefore, the overall purpose of this study was to determine the association of health literacy with experiences, attitudes, and knowledge of the ICD at EOL by ICD recipients.
The specific aims of this study were to:
- 1
identify experiences and attitudes about discussions held with healthcare providers regarding EOL choices (generator replacement and maintenance of defibrillation therapy) among ICD recipients.
- 2
determine the level of knowledge regarding ICD function at EOL among ICD recipients and compare knowledge by inadequate and adequate health literacy.
- 3
determine the association of health literacy with experiences, attitudes and knowledge regarding EOL choices among ICD recipients.
Section snippets
Methods
This cross-sectional study was approved by institutional review boards at two central Kentucky universities in the United States and a hospital ethics board in Melbourne, Australia.
Sample
A total of 274 individuals participated in the study. Two hundred forty of the participants for whom data for all of the variables of interest was complete were included in this analysis (Table 1). There were no significant differences in sociodemographic or clinical variables between those who were included in the analysis and those who were not. The mean age of the overall sample was 62 ± 14 years, 28% of participants were female and 16.7% self-identified as a minority. Thirty-five percent
Experiences of discussions with healthcare providers
According to the perspective of the ICD recipient, adherence to the guidelines regarding EOL discussions was minimal as most patients report that these discussions with their healthcare provider have not taken place. The healthcare provider's role in the decision-making process is to present the facts, risks, and benefits in a concise and understandable manner.
Exploration of the roles of providers and recipients in these discussions has identified barriers to full discussion of the impact of
Strengths and limitations
Strengths of this study include a large sample size and inclusion of similarly situated ICD recipients in Australia. The system of medical care differs in Australia but the standard of care for treatment of ICD recipients is similar. The inclusion of this population highlights the global need for ICD specific advanced directives.
Limitations include the cross-sectional nature of this study particularly in light of the dynamic nature of EOL choices. EOL choices in this study were presented as
Clinical implications
Advanced care planning for ICD recipients is lacking in current practice. There is a need for thorough communication regarding EOL choices in ICD recipients prior to implant and throughout the trajectory of illness. The EOL-ICDQ could be used in the clinical setting to ease these discussions. Further research should focus on educational and counseling interventions to improve understanding of the function of the ICD and its impact on the quality of life during ICD therapy, as well as advanced
Conclusion
Social determinants of health including (gender, race, health literacy), psychosocial comorbidities, and ICD knowledge affect the EOL decision-making process in ICD recipients. These issues should be included in planning for further research and interventions in this population to improve understanding of the function of ICDs and to reduce disparities in the quality of life and the death experience is this population.
Declarations of interest
None.
Funding
This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.
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Introduction
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