Advance Care Planning in brain tumour survivors: a prospective study

Abstract

Purpose: Advance care planning (ACP) is the process of planning for future healthcare to guide clinical decision making when one is unable to communicate decisions due to lack of capacity. This study explored the perspectives of brain tumour (BT) patients in discussing ACP, symptom profile, physical and functional status, quality of life (QoL), level of coping and carer burden. Methods: A prospective cohort study with semi-structured interviews regarding ACP for BT patients in hospital and community. Validated assessment tools measured coping strategies, QoL and carer burden. Interview ACP transcripts were analyzed, coded and interpreted using qualitative analytic techniques for thematic analyses. Results: Participants’ (n=36) mean age was 47 years (range 20-69 years), with median time since diagnosis of 3.9 years and majority (70%) had glioblastoma multiforme (GBM). Fatigue was the most common symptom reported by 89% participants, followed by pain (53%) and cognitive impairment (39%). Overall, participants indicated good QoL and used more problem-focused coping strategies including ‘acceptance’ and ‘positive reframing’. There was a ‘moderate’ level of carer burden. Thematic analyses indicated participants had limited understanding of ACP, and lack of such discussions with healthcare professionals. Majority preferred dedicated sessions by trained healthcare professionals especially medical staff. Conclusion: The low uptake of ACP amongst BT patients’ highlights need for increased awareness of ACP in clinical practice as it has an important role in enhancing patient autonomy and delivery of quality end-of-life care. The neuropalliative-rehabilitation model of care integrates care with treating teams and can provide timely ACP information to BT patients, with the need for multifaceted system-wide interventions in implementing ACP