Advance care planning—family carer psychological distress and involvement in decision making: the ACTION trial

Vandenbogaerde, Isabel; Vleminck, Aline De; Cohen, Joachim; Verkissen, Mariëtte N.; Lapeire, Lore; Ingravallo, Francesca; Payne, Sheila; Wilcock, Andrew; Seymour, Jane; Kars, Marijke C; Grønvold, Mogens; Lunder, Urs̆ka; Rietjens, Judith; Heide, Agnes van der; Deliëns, Luc

doi:10.1136/bmjspcare-2020-002744

Cited by 3 publications

(5 citation statements)

References 15 publications

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“…The cancer care contexts, intervention modalities, and main outcomes were heterogeneous. The interventions were primarily multimodal and of three main types: those that aimed to improve ACP uptake via patient/caregiver-oriented tools (three RCTs) [12–16], those involving trained ACP facilitators’ support of patients and caregivers [six RCTs, including one targeting adolescent and young-adult (AYA) patients] [17,18 ▪ ,19–37], and one involving the prompting of trained physicians’ implementation of ACP discussions in practice (one RCT) [38,39 ▪ ,40–42]. Patient, caregiver, HCP, and healthcare service outcomes were measured.…”

Section: Main Randomized Controlled Trial Characteristicsmentioning

confidence: 99%

“…Six RCTs were performed to evaluate multicomponent interventions aiming to promote ACP uptake through the training of facilitators to inform patients about ACP and guide them throughout the process using standardized tools. Facilitators were selected from existing clinic staffs (mainly nurses) in three studies [17,18 ▪ ,19–32], a psychologist served as a patient navigator in one study [33], and lay community health workers (CHWs) were recruited in two studies [40–42]. All facilitators were trained.…”

Section: Main Randomized Controlled Trial Characteristicsmentioning

confidence: 99%

“…&,[19][20][21][22][23][24][25][26][27][28][29][30][31][32][33][34][35][36][37], and one involving the prompting of trained physicians' implementation of ACP discussions in practice (one RCT)[38,39 & …”

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confidence: 99%

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Interventions aiming to improve advance care planning uptake in oncology: a scoping review of recent randomized controlled trials

Libert,

Langhendries,

Choucroun

et al. 2024

Current Opinion in Oncology

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Purpose of review The evidence regarding the effectiveness of interventions aiming to improve ACP uptake appears mixed. The purpose of this scoping review is to summarize findings from recent RCTs assessing the efficacy of interventions designed to increase ACP uptake in cancer care. Recent findings The PubMed database was searched for studies published between 2021 and 2023. Ten RCTs were identified that evaluated a wide range of interventions aimed at encouraging or facilitating ACP communication among patients with advanced cancer, caregivers, and HCPs. Three RCTs developed ACP facilitation tools for patients and sometimes caregivers. Six RCTs involved integrating trained ACP facilitators into patient care, and one RCT used nudges to encourage oncologists trained in ACP discussions to initiate discussions with patients at highest risk of short-term mortality. Most of the reviewed interventions were based on previously tested intervention approaches or tools. Summary The key effects identified in this review are the facilitation of ACP discussions among patients, caregivers, and HCPs, and the documentation of patient preferences in the medical record. The direct involvement of facilitators in ACP document drafting and inclusion in patient files, as well as interventions prompting end-of-life discussions, contributed to this effect.

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Section: Main Randomized Controlled Trial Characteristicsmentioning

confidence: 99%

Section: Main Randomized Controlled Trial Characteristicsmentioning

confidence: 99%

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Interventions aiming to improve advance care planning uptake in oncology: a scoping review of recent randomized controlled trials

Libert,

Langhendries,

Choucroun

et al. 2024

Current Opinion in Oncology

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“…Moreover, the importance of family integration in advance care planning has been gaining more attention. 2 , 53 The role of the family in this process should consequently be revisited. The findings in this study that illustrated family involvement in advance care planning and explained how it operates in the process could contribute to unravelling the complexity and provide a theoretical underpinning for a family-integrated approach.…”

Section: Further Development Of the Logic Model Of A Family-integrate...mentioning

confidence: 99%

Complexity and function of family involvement in advance care planning: A qualitative study of perspectives from people living with advanced cancer, family members and healthcare professionals

Kishino,

Koffman,

Nagatomi

et al. 2023

Palliat Med

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Background: Family members can support advance care planning conversations. However, how family involvement in advance care planning operates to achieve goal-concordant care remains unclear. Aim: To explore how family involvement impacts the process of advance care planning for advanced cancer patients and their family members to achieve goal-concordant care in Japan. Design: Qualitative study incorporating semi-structured in-depth interviews with thematic analysis informed by Family Systems Theory. Setting/participants: Medical oncology departments at two tertiary hospitals in Japan. A purposive sample of 13 advanced cancer patients, 10 family members and 9 healthcare professionals who cared for them. Results: Twenty-five interviews were conducted, comprising 7 dyads of patients and their family members and 18 individual interviews. Four themes were identified: characteristics of patients and family members and their views on illness and advance care planning; family context and communication; interactions with healthcare professionals and societal and cultural influences; and family members’ acceptance, preparation and confidence. Family involvement was observed as being variable at an individual level and also across generations. Family members provided patients with the instrumental and emotional support that facilitated the advance care planning process. Family involvement enabled family members to better prepare for realising patients’ wishes. It increased family members’ confidence in surrogate decision-making. Conclusions: Two mechanisms of how family involvement may enable goal-concordant care were identified: family members’ support provision and their preparation for realising patients’ wishes. Healthcare professionals should assess family’s readiness to engage in advance care planning, and the time required to prepare them for the process.

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“…ACP can increase delivery of care congruent with individual preferences, and has been seen to reduce undesired hospital admissions [ 5–8 ], life-support treatment [ 8 ], as well as increase quality of life, healthcare satisfaction, and use of palliative care [ 5 , 6 , 8 ]. Despite the sensitive nature of ACP conversations, studies show no evidence of increased stress, anxiety, or depression, either for patients or their family [ 5 , 6 , 9 ].…”

Section: Introductionmentioning

confidence: 99%

Implementing advance care planning in Swedish healthcare settings – a qualitative study of professionals’ experiences

Beck

Lundblad

Göras

et al. 2022

Scandinavian Journal of Primary Health Care

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Background Advance care planning (ACP) is a process involving conversations about values and preferences regarding future care at the end-of-life. ACP has led to positive outcomes, both in relation to quality of life and with increased use of palliative care, less life-sustaining treatment and fewer hospital admissions. Sweden has yet to embrace the practice systematically, but scattered initiatives exist. Aim To study implementation of a routine for ACP in NH settings in Sweden by exploring healthcare professionals’ experiences of engaging in ACP following this implementation. Methods The study followed a qualitative inductive design with convenience and snowball sampling. Semi-structured group and individual interviews with registered healthcare professionals were analysed using qualitative content analysis. Findings Organisational support for sustainable ACP implementation was found to be essential. This included sufficient training, facilitation, collaboration and uniform work routines across providers and professionals. Engaging in ACP conversations following the implemented routine was found to be a process of preparing, being, talking, deciding and sharing. Conclusions Successful implementation of ACP in NHs requires a carefully planned implementation strategy. ACP in NHs tend to be medically focused at the expense of residents’ psychosocial care-planning needs. Widespread uptake of ACP in Sweden could be useful in the national effort to adopt more person-centred care in Swedish healthcare. KEY POINTS While advance care planning has been implemented in many other countries, Sweden lacks a national strategy on advance care planning and Swedish healthcare settings have yet to systematically implement this practice. • This study is the first to report on professionals’ experiences of engaging in sustainable advance care planning, following top-down implementation of the practice in one Swedish region. • Successful implementation of advance care planning in nursing homes requires a system-level approach, and shortcomings of the implementation process are highlighted.

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Advance care planning—family carer psychological distress and involvement in decision making: the ACTION trial

Cited by 3 publications

References 15 publications

Interventions aiming to improve advance care planning uptake in oncology: a scoping review of recent randomized controlled trials

Interventions aiming to improve advance care planning uptake in oncology: a scoping review of recent randomized controlled trials

Complexity and function of family involvement in advance care planning: A qualitative study of perspectives from people living with advanced cancer, family members and healthcare professionals

Implementing advance care planning in Swedish healthcare settings – a qualitative study of professionals’ experiences

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