Emotional expression in conversations about advance care planning among older adult home health patients and their caregivers

https://doi.org/10.1016/j.pec.2021.02.029Get rights and content

Highlights

  • Patients’ and caregivers’ emotional expression during an ACP planning intervention was mostly positive.

  • Patients and caregivers were similar in expression and positive and negative valence across topics during ACP discussions.

  • Five out of 18 patient-caregiver dyads (28%) had interactions where emotional expression was avoided.

  • Findings describe emotional contexts during shared decisions and have implications for future research and practice.

Abstract

Objectives

To examine patient and caregivers’ differences in emotional expression and explore topics associated with emotional expression during advance care planning (ACP) discussions.

Methods

Older adult home health patient-caregiver dyads participated in video-recorded ACP conversations as part of a collaboration-focused intervention study. Recordings were coded in Noldus Observer XT, analyzed with descriptive statistics, Cochran-Mantel-Haenszel and Breslow-Day test, and integrated with qualitative content analysis.

Results

Eighteen patient-caregiver dyads were purposively recruited. Participants were mostly female (11 patients; 13 caregivers). Mean ages were 68.22 (SD = 9.64) for patients and 61.28 (SD = 13.60) for caregivers. Emotional expression (depth of emotion, positive and negative valence) was similar across patients and caregivers. Conversations centered on positive and negative decisional, relational, and existential topics.

Conclusions

This study explored emotional expression and identified topics associated with emotion for patients and caregivers during collaborative ACP. Findings suggest that collaboration in ACP can have positive relational aspects for patient-caregiver dyads, while negative emotions can also be distressing.

Practice implications

This study describes the range of emotions that are common during patient and caregiver ACP discussions. Clinical implications for the assessment of caregiver support and awareness of the interdependent nature of decision making is discussed.

Introduction

Emotions have been shown to be reciprocated in end-of-life communication [1], and can guide social decisions [2]. However, emotional end-of-life conversations can be difficult for patients and families [3] and can hinder communication about illness and decision making [4,5].

Family members can influence patients’ medical decisions [6] and are more likely to discuss end-of-life topics with patients than physicians [7]. Open communication about end-of-life care preferences has been associated with better post-bereavement psychological outcomes for caregivers and higher quality of end-of-life care for patients [8]. The lack of open communication can negatively affect surrogate decisions [9,10], suggesting a need for closer examination of the emotional context of ACP communication for both patients and caregivers.

Traditionally, emotional processes have been thought to bias rational thinking; however, the interrelationship of cognitive-affective processes on decision making and behavior is increasingly recognized [11]. For example, positive emotions such as feelings of affiliation have been associated with charitable giving, while avoidance of negative emotions, such as anxiety, can drive risk-adverse choices [11], and encourage prosocial moral choices (as in the case of guilt) [12]. Confronting negative emotions may also be helpful for relationships—reflection on distressing emotions focused on finding meaning has been found to reduce negative perceptions of interpersonal conflict [13]. Conversely, avoidance of emotions has been associated with greater preferences for aggressive end-of-life care [14]. Thus, it is possible that addressing emotional and relational barriers may improve the process of ACP for patients and families [15]. Awareness of the psychological drivers of economic behavior, and recognition that these drivers may not always be rational, has been applied to the understanding of ACP [16], opening up the possibility of leveraging constructive facilitation of emotional and relational processes to encourage and optimize ACP.

While emotions are common during ACP discussions, little research has examined the emotional context of these discussions [17], particularly in the context of shared decision making for ACP among patients and their caregivers. Shared decision making is an approach that engages patients in decisions with their healthcare providers [18], however is seldom explored between patients and caregivers as stakeholders. Thus, this study aimed to examine how patients and caregivers express emotions during shared ACP decision making discussions by 1) exploring the differences in emotional expression between patients and caregivers, and 2) contextualizing emotions expressed in conversations about ACP.

Section snippets

Methods

This study analyzed emotional expression and topics associated with emotional expression among older adult home health patients and their caregivers during a collaboration-focused ACP intervention [19]. The study was approved by the University of Utah Institutional Review Board.

Participant characteristics

Eighteen dyads (nine spousal, four parent-child, and five other family/close friend relationships) participated in the study (response rate = 13.64%). The majority of patients (n = 11) and caregivers were female (n = 13) and married (patients n = 10; caregiver n = 12). Except for a caregiver who was Hispanic, all participants were non-Hispanic White. Over three quarters of patients had completed at least one type of ACP. Additional participant characteristics are presented in Table 1.

Differences in emotional expression between patients and caregivers

Patients

Discussion

ACP entails discussion about end of life, which is often emotional for patients and their caregivers. While emotions have traditionally been understood as biases that cloud rational thinking, research now supports the view that emotions operate in conjunction with cognitive judgement [11]. To our knowledge, this study was one of the first to examine emotional expression and context of ACP conversations between older adult home health patients and their caregivers.

Funding

The first author was funded by a University of Utah Graduate Research Fellowship during the course of the study.

CRediT authorship contribution statement

Djin L. Tay: Conceptualization, Methodology, Investigation, Formal analysis, Writing - original draft, Project administration. Lee Ellington: Conceptualization, Methodology, Resources, Writing - review & editing, Supervision. Gail L. Towsley: Conceptualization, Methodology, Supervision, Writing - review & editing. Katherine Supiano: Conceptualization, Methodology, Supervision, Writing - review & editing. Cynthia A. Berg: Conceptualization, Methodology, Supervision, Writing - review & editing.

Declaration of Competing Interest

The authors report no declarations of interest.

Acknowledgements

We would like to thank Dr. Andrew Wilson for providing advice and feedback on the statistical analyses in this study and Madison Walker for assisting with the observational coding.

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