Understanding Advance Care Planning as a Dyadic Process

Fried, Terri

Abstract

The concept of advance care planning (ACP) is undergoing an evolution. ACP was originally conceptualized as the process by which patients could specify in advance the treatment they would want to receive if they became decisionally incapable. In its traditional format, it consist of the completion of advance directives. However, it has been shown that the completion of documents is not in and of itself sufficient to improve end-of-life outcomes. This has led to newer conceptions of ACP as an act of communication, so that ACP, once considered a process completed by an individual, is now viewed as a dyadic process. Communication between patients and surrogates regarding patients'values and preferences is particularly important because surrogates are frequently involved in treatment decision making for acutely ill patients. Surrogates'knowledge of patients'preferences can help to ensure that patients receive care consistent with these preferences. Despite the importance of patient-surrogate communication, little is known about this dyadic aspect of ACP. The few existing observational studies examining communication rely on either patient or surrogate report alone, without concomitantly examining the perspectives of both. Prior work of the Principal Investigator has characterized ACP as a process of health behavior change, based on the Transtheoretical Model (TTM). This work has demonstrated that older persons and surrogates are frequently in different stages of behavior change regarding communication about end-of-life issues. As a consequence, sizeable proportions of pairs disagree about whether they are in the Action/Maintenance stage, meaning they disagree about whether engagement in ACP has occurred. In addition, there are also substantial proportions who agree that engagement in ACP has not occurred. As the most fundamental measure of the effectiveness of communication, lack of a shared understanding about engagement in ACP indicates the presence of barriers to communication. Understanding the barriers to and facilitators of a shared understanding about engagement in ACP is critical to the design of interventions to change behavior. Whether agreement about engagement in ACP leads to a shared understanding of the patient's treatment goals, one of the key outcomes of ACP engagement, is also unknown. The long-term objective of this body of work is the development of tailored interventions to improve ACP. The immediate objective of this proposal is to understand ACP better as a dyadic process. Because so little is known about this process, mixed quantitative and qualitative methods will be utilized to ensure that relevant domains not previously documented in the literature are elicited from participants.
The specific aims are: Primary Aim 1: To examine quantitatively the association between older person-surrogate agreement regarding the components of ACP behavior change and agreement regarding older persons'treatment goals. Primary Aim 2: To elucidate qualitatively the barriers to and facilitators of older person-surrogate dyads reaching agreement that they have achieved the Action/Maintenance stage of (have engaged in) ACP. Participants will be veterans age 55 and older and the person they identify as their surrogate decision maker. Dyads will undergo a quantitative telephone interview designed to identify their Stage of Change for four key ACP behaviors as well as Decisional Conflict and Values/Beliefs regarding ACP and to characterize older person-surrogate agreement regarding the older person's treatment goals, so that the relationships among these variables can be modeled. A subset of dyads will undergo a follow-up joint telephone open-ended interview. Content analysis of the transcripts will be conducted to develop a taxonomy of barriers to and facilitators of dyads'reaching agreement that they have engaged in ACP.

Public Health Relevance

The growing population of aging veterans with complex health conditions requires effective and efficient approaches to engaging both beterans and their caregivers in advance care planning (ACP), the process by which they can prepare for the difficult healthcare decisions they are likely to face. Effective engagement in ACP can improve caregiver outcomes and ensure that patients'values are represented in end-of-life care decisions. The long-term objective of this body of work is the development of tailored interventions to improve ACP. The proposed project will provide data about ACP as a process that requires the engagement of both veterans and caregivers, communicating to reach a shared understanding of veterans'goals. These data are essential to the design of interventions that target both the veteran and caregiver as an interconnected pair.