The Development, Refinement, and Psychometric Testing of the Attitude Toward Advanced Directive Survey in Implantable Cardioverter Defibrillator Patients

Abstract

Implantable cardioverter defibrillators (ICDs) have been the treatment of choice for those who experienced or are at risk of sudden cardiac arrest. Many patients who receive these devices experience progressive comorbid and cardiac conditions and may not want the additional survival provided by an ICD. Clinicians will need to counsel patients and families about advanced directives when their ICD is no longer beneficial, to prevent unnecessary suffering near the end of life. The Attitude Towards Advanced Directive Survey was developed to assess patients' level of knowledge and identify the barriers that prevent them from completing advanced directives. This will help clinicians promote completion of advanced directives by addressing barriers and increasing knowledge of them. The purpose of this study was to develop and evaluate the psychometric properties of the survey and investigate reliability and validity from its use among ICD patients. A convenience sample of 200 patients who have an ICD participated in this study. Psychometric testing of the Attitude Towards Advanced Directive Survey provided evidence to support the validity and reliability of the survey. Moderate to strong factor intercorrelations and conceptual meaningfulness led to the combination of 5 factors. The 5 factors were as follows: factor 1: communication barriers; factor 2: informed confidence; factor 3: timing of discussion; factor 4: patient-family relationship; and factor 5: patient-provider relationship. Reliability coefficient α ranged from .67 to .95 for the factors and .75 for the total scale. Stability reliability of the survey was analyzed through test-retest of the survey, with a response rate of 34% (n = 68), and revealed a significant positive correlation (r = .62; P < .001) between the first and second testing. The participants reported communication barriers and demonstrated poor understanding of their medical condition/treatments and were not comfortable discussing advanced directives with their families. They preferred to discuss advanced directives when they were first diagnosed and at every office visit because they felt more comfortable discussing advanced directives with their healthcare provider. This survey has the potential to be used in clinical practice and future research.

Are ICD recipients able to foresee if they want to withdraw therapy or deactivate defibrillator shocks?

“…While advanced directives are considered an essential part of care for the ICD population, this was not a reality in our study where only 7% had expressed their preferable wishes, verbally or in writing, to their family. This is in line with Conelius [13] who found that participants were uncomfortable discussing advanced directives with their families. It is reasonable to assume that these preferences emanate from a wish to postpone decisions and even forget about the real reason for having an ICD.…”

“…It is also possible that resistance to discussing deactivation partly can be explained by lack of actual knowledge and true understanding of the ICD and its functions. Many patients do not understand the specifics of their device with regard to their medical condition [13] , [30] , [31] . By openly discussing the illness trajectory and option of deactivating an ICD, after providing patients with sufficient knowledge to process these discussions, clinicians encourage shared decision making and provide patients control over their healthcare choices.…”

“…Communication about ICDs at the end-of-life presents many challenges, and it is unclear if clinicians and patients routinely discuss management of ICDs at the end-of-life and the alternative modes of dying [3] , [4] . In several small scale studies, investigators have examined patient preferences for discussions regarding death and attitudes about deactivation of ICDs at the end-of-life [5] , [6] , [7] , [8] , [9] , [10] , [11] , [12] , [13] , [14] . The majority of patients want to be involved in a deactivation discussion [6] , [11] , yet some are reluctant [7] , [8] , [14] and also uncomfortable discussing advanced directives with their families [13] .…”

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

“…Validated instruments testing patients’ attitudes concerning end-of-life issues are rare, but Conelius 9 recently developed a survey aiming to determine ICD recipients’ preferences, barriers to completion, and understanding of advanced directives. Also Kirkpatrick et al 10 developed a questionnaire focusing on advanced directives, including the living will and healthcare power of attorney, but this survey was primarily based on expert validation.…”

“…In order to be a trustworthy instrument the questions need to be valid and relevant also from patients' point of view, and the questionnaire used in a way that patients feel secure to give truthful and honest answers. 8 Validated instruments testing patients' attitudes concerning end-of-life issues are rare, but Conelius 9 has recently developed a survey aiming to determine ICD-recipients' preferences, barriers, and understanding towards an advanced directive. Also Kirkpatrick et al.…”