How Should End-of-Life Advance Care Planning Discussions Be Implemented According to Patients and Informal Carers? A Qualitative Review of Reviews

Abstract

Context. The goal of advance care planning (ACP) is to help ensure that the care people receive during periods of serious illness is consistent with their preferences and values. There is a lack of clear understanding about how patients and their informal carers feel ACP discussions should be implemented. Objectives. The objective of this study was to synthesize literature reviews pertaining to patients' and informal carers' perspectives on ACP discussions. Methods. This is a systematic review of reviews. Results. We identified 55 literature reviews published between 2007 and 2018. ACP discussions were facilitated by a diverse range of formats and tools, all of which were acceptable to patients and carers. Patients and carers preferred health professionals to initiate discussions, with the relationships they had with the professionals being particularly important. There were mixed feelings about the best timing, with many people preferring to defer discussions until they perceived them to be clinically relevant. ACP was felt to bring benefits including a greater sense of peace and less worry, but it could also be disruptive and distressing. Patients and carers perceived many benefits from ACP discussions, but these may differ from the dominant narratives about ACP in health policy and may move away from the narratives of RCTs and standardization in research and practice. Conclusion. Researchers and clinicians may need to adjust their approaches as current practices are not aligned enough with patients' and carers' preferences. Future research may need to test implementation strategies of ACP interventions to elucidate how benefits from standardization and flexibility might both be realized.

The Desire to Die in Palliative Care: A sequential mixed methods study to develop a semi-structured clinical aproach

“…A recent qualitative review of the international literature points out that patients unanimously prefer ACP discussions being proactively initiated by health professionals. 47 These characteristics of ACP are consistent with our approach to proactively addressing desire to die.…”

Rebuilding and guiding a care community: A grounded theory of end‐of‐life nursing care practice in long‐term care settings

“…ACP is a process that supports adults in understanding and sharing their personal values, life goals, and preferences about future medical care (Sudore et al, ) and is considered beneficial, mainly because of its ability to preserve patient autonomy (Robins‐Browne, Palmer, & Komesaroff, ). However, in the LTC context, residents and relatives had concerns about its value given that preferences may change, the future is unpredictable, and decisions made during ACP may not be feasible (Hall, Rowland, & Grande, ). In addition, many Japanese older adults do not have definite advance wishes related to EOL care (Yamaguchi et al, ).…”

Experiences of advance care planning in Parkinson's disease and atypical parkinsonian disorders: a mixed methods systematic review

“…Although UK and American guidelines state that patients should have opportunities to discuss ACP, it is unclear when that should occur, with whom and what should be covered [11,12]. This leads to variation in what is meant by ACP and how it is delivered [13]. Furthermore, little is known regarding how patients with PD or atypical parkinsonian disorders, their families or healthcare professionals (HCPs) experience ACP and their thoughts towards it [14,15].…”