Abstract

A disparity exists between the medical intervention people say they want to receive at end-of-life and the care that is typically delivered. Advance care planning (ACP) involves discussing end-of-life care wishes, including relevant values and cultural beliefs, and documenting these preferences for medical providers and loved ones to minimize unwanted suffering and maximize quality of life. Numerous healthcare institutions have emphasized the importance of doing ACP prior to an imminent medical need, prompting researchers to implement awareness campaigns and interventions in earlier stages of healthcare interactions (e.g., primary care). However, motivation to follow through with ACP varies depending on numerous factors including overall readiness, understanding of the risks and benefits, and how one manages the internal experience of facing one’s own mortality. One intrinsic experience that has been shown to be important for health behavior change is situation specific-confidence, or self-efficacy. This work builds on previous research that approaches ACP intervention from the theoretical framework of the Transtheoretical model (TTM) of behavior change, in which self-efficacy is a core component. Study 1 of this dissertation sought to explore the construct of self-efficacy specific to doing ACP with qualitative work including expert interviews and focus groups with older adults in the community about their experiences. The work presented describes the efforts to understand self-efficacy as a barrier to engagement in end of life care planning. Self-efficacy was associated with interpersonal support, access to structured tools to guide discussions, and tolerance of the unpleasantness of negative emotions. Assessment of themes from focus groups and expert interviews was conducted to write items of a scale of self-efficacy to do ACP. Study 2 of this dissertation describes the development and validation of a scale of ACP self-efficacy using a sequential approach to measure development. Qualitative and quantitative methods were utilized for item development/refinement and scale validation. Split-half validation procedures were conducted, with exploratory and confirmatory factor analyses on randomly selected subsamples. The results of several iterations of exploratory factor analyses supported a final set of 12 items loading on one factor, with high internal consistency. The final 12-item ACP self-efficacy scale was found to have good overall model fit in confirmatory analyses, assessed with χ2 tests of significance and fit indices. Further, the developed scale was validated using previously developed TTM measures of ACP behavior change (Stage of Change, Decisional Balance) and related constructs (General Self-Efficacy, Attitudes Values & Cultural Beliefs). As expected, ACP

Highlights

  • In their comprehensive report, Dying in America, the Institute of Medicine[1](IOM) called on healthcare providers and organizations to review their efforts to provide compassionate, person-centered end-of-life care that emphasizes the patient’s desired quality of life

  • advance care planning (ACP) interventions have historically focused on ensuring that an advance directive has been completed, including completion of a living will and appointment of a durable power of attorney for health care.[2,40]

  • Engaging patients and loved ones in discussions about advance care planning can be challenging due to the discomfort in discussing death or ‘states worse than death.’[42]. Patients may feel less confident broaching these topics with loved ones, including those they may name as surrogates or health care agents, if they believe these conversations may upset them.[20]

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Summary

Introduction

The IOM called on healthcare providers and policy makers to focus on delivery of effective, supportive, high quality care planning initiatives that reflect the values and preferences of the people they serve. To be successful, these efforts must acknowledge the multifaceted nature of exploring and documenting one’s preferences and wishes for their end-of life care; a process referred to as advance care planning (ACP). Motivation to engage in ACP can vary based on access to information about end-of-life care planning, interpersonal drivers of behavior change (e.g., encouragement from medical doctors or loved ones), and one’s own sense of confidence in their ability to persist through emotional discomfort when discussing end-of-life and care options. The objective of this work is to develop a validated scale of ACP self-efficacy

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