Interventions Guiding Advance Care Planning Conversations: A Systematic Review

Abstract

Background: Advance care planning (ACP) is a communicative process of defining preferences for future medical care. Conversation guides support professionals to conduct ACP conversations, yet insight into essential components is limited. Objectives: To evaluate the content, rationale, and empirical evidence on the effect of ACP interventions based on conversation guides. Methods: MEDLINE, Embase, PsycINFO, and CINAHL were searched from January 1, 1998, to February 23, 2018, to identify peer-reviewed articles describing or evaluating ACP interventions based on scripted conversation guides. A thematic analysis of the guides was performed. Data on intervention characteristics, underlying rationale, and empirical evidence were extracted by 2 authors independently using a predesigned form. Assessment of risk of bias and quality of reporting was performed using Cochrane tools and COREQ, respectively. Results: Eighty-two articles reporting on 34 unique interventions met the inclusion criteria. Analysis of the conversation guides revealed a framework for ACP conversations consisting of 4 phases: preparation, initiation, exploration, and action. Exploration of patient's perspectives on illness, living well, end-of-life (EOL) issues, and decision making formed the core part of the guides. Their design was often expertbased, without an underlying theoretical background. Empirical evidence on the effect of the interventions was based on heterogeneous outcome measures. Dyad congruence and preference documentation rates increased among intervention subjects in most studies. The studies showed varying effects on knowledge of ACP, decisional conflict, quality of communication, and preferences-concordant care. Qualitative research showed that participants appreciate the importance and benefits of ACP conversations, yet perceive them as difficult and emotional. Conclusion: ACP conversation guides address a diversity of themes regarding illness, EOL issues, and decision making. There is a focus on the exploration of patient's perspectives and preferences. Evidence on the translation of explorative information into specific treatment preferences and consequences for care as provided is limited.

Towards advance care planning in pediatrics: a qualitative study on envisioning the future as parents of a seriously ill child

“…First, whereas ACP aims to discuss future situations, parents might need a stepwise approach that begins close to their actual situation. With the current tendency to initiate ACP early in a disease trajectory [23], aiming to oversee a future which is further away, it becomes even more important to achieve a shared understanding of the child's illness and the actual situation as a first step in ACP [3,6,9]. This need for an initial focus on disease-related issues when discussing the future is in line with earlier research, where the strive for controlled symptoms and controlled disease was the key parental aim [28].…”

“…This might complicate a shared understanding of future care goals and hinder shared decision making. Conversation guidelines may help clinicians to address existential issues in the context of ACP [9,30].…”

Survey of paediatricians caring for children with life‐limiting conditions found that they were involved in advance care planning

“…ACP originally focused on the completion of advance directives. But, today, there is consensus that the key elements of ACP are the exploration of personal values and preferences regarding living with an illness, now, or in the future, and sharing of these values and preferences with others . It remains unclear whether paediatricians conduct ACP conversations with families in an informative way with a focus on treatment decisions or whether they are able to engage in deeper explorations of the child's and family's underlying individual values and preferences.…”

When a child dies: a systematic review of well-defined parent-focused bereavement interventions and their alignment with grief- and loss theories

“…The quality assessment was performed by two researchers independently. The trials were assessed using the Cochrane risk of bias tool (KG, AvdH) [35], observational studies with an adapted risk of bias tool based on the Cochrane risk of bias assessment tool (KG, AvdH) [36], and qualitative studies were assessed with the COnsolidated criteria for REporting Qualitative research (COREQ) (FJ, EK) [37], recommended by Cochrane Netherlands. The total scores ranged from 0 to 7 in the trials and observational studies, and from 0 to 32 in the qualitative studies.…”