How to enhance advance care planning research?

Vleminck, Aline De; Block, Lieve Van den

doi:10.1177/02692163231170658

Cited by 5 publications

(3 citation statements)

References 11 publications

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“…However, GPs and patients also described how engaging in conversations engendered feelings of trust and peace of mind, where patients felt reassured that their GP knew and supported their wishes. This impact aligns with important but under-researched outcomes of ACP within the domain of social, relational, and emotional aspects [ 37 , 44 , 45 ], but was not captured by the questionnaire.…”

Section: Discussionsupporting

confidence: 52%

Experiences with implementing advance care planning (ACP-GP) in Belgian general practice in the context of a cluster RCT: a process evaluation using the RE-AIM framework

Stevens,

Scherrens,

Pype

et al. 2024

BMC Prim. Care

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Background General practice is often recommended as an ideal setting to initiate advance care planning (ACP), but uptake of ACP in this setting is low. ACP-GP is a complex intervention to facilitate ACP for patients with chronic, life-limiting illness in Belgian general practice. It aims to increase patient ACP engagement and general practitioner (GP) ACP self-efficacy. In a cluster-randomized controlled trial, the intervention was not superior to control in increasing these outcomes. A parallel process evaluation aimed to enhance understanding of how the intervention was implemented, and which factors might have influenced trial results. Methods We conducted a mixed-methods process evaluation following the Reach, Effectiveness, Adoption, Implementation, Maintenance (RE-AIM) framework. Data sources include recruitment and implementation monitoring, questionnaires for patients and GPs, and semi-structured (focus group) interviews with patients and GPs. Questionnaire data were analyzed descriptively. Qualitative data were first analyzed inductively; themes were then assigned deductively to RE-AIM dimensions. Results Thirty-five GPs and 95 patients were recruited to the trial; GP reach was low. Sixteen GPs and 46 patients provided questionnaire data at 3 months post-baseline; qualitative data were transcribed for 14 GPs and 11 patients. Adoption of intervention components was moderate to good, with the exception of the documentation template for GPs. Interviews revealed varying patient attitudes towards ACP, but patients nonetheless emphasized that conversations made them feel reassured. GPs especially valued a positive framing of ACP. When adopted, the intervention was well-implemented and participant satisfaction was high. However, intention for maintenance was moderate, with GPs raising questions of how to sustainably implement ACP conversations in the future. Conclusions Implementing the complex ACP-GP intervention in general practice is feasible, and can be successful. However, the implementation process is challenging and the sustainability is suboptimal. Our findings will guide future research and recommendations for facilitating and implementing ACP in general practice. Trial registration ISRCTN12995230; prospectively registered on 19/06/2020.

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Section: Discussionsupporting

confidence: 52%

Experiences with implementing advance care planning (ACP-GP) in Belgian general practice in the context of a cluster RCT: a process evaluation using the RE-AIM framework

Stevens,

Scherrens,

Pype

et al. 2024

BMC Prim. Care

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“…But being able to think and talk about a “good death” and recording end-of-life choices is perceived as a privilege, as many people are not in this position. Moreover, despite many people being concerned with end-of-life choices ( Harnas & Toersen, 2018 ), this group is already quite vocal in contrast to the group of people not engaged in their end-of-life choices, making this second group interesting for further research ( De Vleminck & Van den Block, 2023 ). Additionally, it is important to mention that this study is situated in the Dutch culture, in which the tendency is to prioritize individual choice-making rather than dialogue.…”

Section: Discussionmentioning

confidence: 99%

“It’s like crystal gazing”: The Lived Experience of Anticipating End-of-Life Choices in Older Adults and Their Close Ones

Antonides,

van Wijngaarden

2024

The Gerontologist

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Background and Objectives Nowadays people increasingly try to take control over the end of their lives by anticipating end-of-life choices. Explication of these choices is encouraged using advance care planning (ACP). We aim to deepen our understanding of how choice-making processes are lived in real life, exploring the experience of community-dwelling older adults and their close ones over time. Research Design and Methods A multiperspective and longitudinal approach grounded in phenomenology was chosen. Ten triads consisting of an older adult (75+) and two close ones (n=30) were interviewed, twice individually and once as a group, over 20 months (=70 interviews). Data were thematically analyzed both longitudinally and from all three perspectives. Results The essential meaning of anticipating choice-making processes was described as a dynamic and relationally entangled decisional process, to navigate between paradoxical choices for an opaque future. Three fields of tension were created due to ambivalence in these choice-making processes: navigation between having and losing control, between taking away and burdening with responsibility, and between expressing and holding back oneself. Discussion and Implications Anticipation of choices for hypothetical end-of-life scenarios turned out to be complex and ambivalent. Most older adults resisted ambivalence and ignored complexity in an attempt to stay in control over their end of life. The burdening impact of choices on close ones illuminated the relationality of choice-making processes. These aspects of end-of-life choice-making processes should be integrated into ACP in order to better understand and care for people and their close ones faced with these choices.

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“…Narrative ethnography analyses stories in their context [ 29 ]. The design chosen in the present study is highly consistent with a recent call for ethnographic and narrative research of ACP to respectively gain a better understanding of (ii) how practice and experiences are shaped within a specific context, and (ii) the meaning-making of ACP through the storytelling of their particular experiences [ 30 ].…”

Section: Methodsmentioning

confidence: 99%

Advance care planning with older Norwegian adults in their homes: a narrative ethnographic study

Festvåg,

Sverre,

Paulsen

et al. 2024

BMC Palliat Care

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Background The aim of advance care planning (ACP) is to enable patients to define and discuss their values and preferences to ensure that the care they receive is consistent with their needs and wishes. Most studies of ACP with older adults focus on conversations conducted in institutions. This study aimed to explore how ACP with older patients is carried out and experienced by healthcare professionals when the conversations occur in their private homes. Methods The data were obtained from participant observations of ACP conversations in the homes of eight older patients with advanced cancer, which also involved relatives and healthcare professionals. Additionally, ethnographic interviews were conducted with the healthcare professionals. We undertook a narrative analysis of what was said, and how the individuals acted and interacted. Results The home influenced both the substance and form of the ACP conversations. The patients and relatives welcomed the healthcare professionals as guests and were encouraged to share their perceptions of their current situation, joys and worries. Their values were often implicit in their stories about past experiences. The planning mainly focused on life-prolonging treatment and the preferred future place of care. Several patients were not ready to discuss one or more ACP issues. The palliative-care-team physician addressed the patients’ readiness for ACP by asking for permission to move on to a different topic, shifting between serious and lighter topics, and using elements from the home as ‘door openers’ to continue conversations. ACP conversations were an essential basis for future palliative care and cooperation, giving important additional information about the patient and their relatives. Conclusion Conducting the ACP conversations in the patients’ homes ensured a homely atmosphere that facilitated a caring approach when sensitive issues were discussed, and in turn supported the identification of important personal values. The healthcare professionals expressed that the ACP conversations represented an essential common reference point and provided a shared awareness of the expected disease trajectory and the values, preferences and needs of the patient. These findings are particularly important given that many older patients struggle to verbalize or form an opinion on issues affecting their future.

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How to enhance advance care planning research?

Cited by 5 publications

References 11 publications

Experiences with implementing advance care planning (ACP-GP) in Belgian general practice in the context of a cluster RCT: a process evaluation using the RE-AIM framework

Experiences with implementing advance care planning (ACP-GP) in Belgian general practice in the context of a cluster RCT: a process evaluation using the RE-AIM framework

“It’s like crystal gazing”: The Lived Experience of Anticipating End-of-Life Choices in Older Adults and Their Close Ones

Advance care planning with older Norwegian adults in their homes: a narrative ethnographic study

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