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Social and structural conditions for the avoidance of advance care planning in neuro-oncology: a qualitative study

Llewellyn, H; Neerkin, J; Thorne, L; Wilson, E; Jones, L; Sampson, EL; Townsley, E; (2018) Social and structural conditions for the avoidance of advance care planning in neuro-oncology: a qualitative study. BMJ Open , 8 (1) , Article e019057. 10.1136/bmjopen-2017-019057. Green open access

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BACKGROUND: Primary brain tumours newly affect >260 000 people each year worldwide. In the UK, every year >10 000 people are diagnosed with a brain tumour while >5000 die annually from the disease. Prognoses are poor, cognitive deterioration common and patients have prolonged palliative needs. Advance care planning (ACP) may enable early discussion of future care decisions. Although a core commitment in the UK healthcare strategy, and the shared responsibility of clinical teams, ACP appears uncommon in practice. Evidence around ACP practice in neuro-oncology is limited. OBJECTIVES: We aimed to elicit key social and structural conditions contributing to the avoidance of ACP in neuro-oncology. DESIGN: A cross-sectional qualitative study design was used. SETTING: One tertiary care hospital in the UK. PARTICIPANTS: Fifteen healthcare professionals working in neuro-oncology participated in this study, including neuro-oncologists, neurosurgeons, clinical nurse specialists, allied healthcare professionals and a neurologist. METHOD: Semi-structured interviews were conducted with participants to explore their assumptions and experiences of ACP. Data were analysed thematically using the well-established framework method. RESULTS: Participants recognised the importance of ACP but few had ever completed formal ACP documentation. We identified eight key factors, which we suggest comprise three main conditions for avoidance: (1) difficulties being a highly emotive, time-intensive practice requiring the right 'window of opportunity' and (2) presence and availability of others; (3) ambiguities in ACP definition, purpose and practice. Combined, these created a 'culture of shared avoidance'. CONCLUSION: In busy clinical environments, 'shared responsibility' is interpreted as 'others' responsibility' laying the basis for a culture of avoidance. To address this, we suggest a 'generalists and specialists' model of ACP, wherein healthcare professionals undertake particular responsibilities. Healthcare professionals are already adopting this model informally, but without formalised structure it is likely to fail given a tendency for people to assume a generalist role.

Type: Article
Title: Social and structural conditions for the avoidance of advance care planning in neuro-oncology: a qualitative study
Location: England
Open access status: An open access version is available from UCL Discovery
DOI: 10.1136/bmjopen-2017-019057
Publisher version: http://dx.doi.org/10.1136/bmjopen-2017-019057
Language: English
Additional information: This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/
Keywords: adult palliative care, advance care planning, healthcare professional, neurological oncology, qualitative research
URI: http://discovery.ucl.ac.uk/id/eprint/10043314
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