How can advance care planning support hope in patients with advanced cancer and their families: A qualitative study as part of the international ACTION trial

Abstract

Objective: Clinicians' fears of taking away patients' hope is one of the barriers to advance care planning (ACP). Research on how ACP supports hope is scarce. We have taken up the challenge to specify ways in which ACP conversations may potentially support hope. Methods:In an international qualitative study, we explored ACP experiences of patients with advanced cancer and their personal representatives (PRs) within the cluster-randomised control ACTION trial. Using deductive analysis of data obtained in interviews following the ACP conversations, this substudy reports on a theme of hope. A latent thematic analysis was performed on segments of text relevant to answer the research question.Results: Twenty patients with advanced cancer and 17 PRs from Italy, the Netherlands, Slovenia, and the United Kingdom were participating in post-ACP interviews. Three themes reflecting elements that provide grounds for hope were constructed. ACP potentially supports hope by being (I) a meaningful activity that embraces uncertainties and difficulties; (II) an action towards an aware and empowered position; (III) an act of mutual care anchored in commitments. Conclusion:Our findings on various potentially hope supporting elements of ACP conversations provide a constructive way of thinking about hope in relation to ACP that could inform practice.

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

“…Descriptive analysis revealed that two in three patients considered the ACP conversations to be ‘quite or very helpful’, while one in six patients found them to be ‘quite or very stressful’ [ 18 ▪ ]. Qualitative analyses of patient and caregiver interview content showed that ACP conversation participation does not require patients to be ready to address all ACP topics [ 21 ], and that ACP potentially supports hope [ 22 ] and allows patients and caregivers to share mutual understanding and concerns [ 23 ].…”

“…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.…”

“…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.…”

“…&,[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 & …”