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'I'm just waiting…': an exploration of the experience of living and dying with primary malignant glioma


Philip, J and Collins, A and Brand, CA and Moore, G and Lethborg, C and Sundararajan, V and Murphy, MA and Gold, M, 'I'm just waiting ': an exploration of the experience of living and dying with primary malignant glioma, Supportive Care in Cancer, 22, (2) pp. 389-397. ISSN 0941-4355 (2014) [Refereed Article]

Copyright Statement

© Springer-Verlag Berlin Heidelberg 2013.

DOI: doi:10.1007/s00520-013-1986-1


Purpose:Referral to supportive and palliative care services for people with high-grade primary malignant glioma (PMG) often occurs late in the illness course, despite significant care needs and overall poor prognosis. This study aimed to understand patient experience at the end of life and document supportive and palliative care needs.

Methods: A qualitative study was conducted involving ten PMG patients who were at different stages in the illness course including the end of life and had varying levels of physical and cognitive function. Consecutive, eligible patients attending neurosurgery, oncology, and palliative care services of two metropolitan hospitals were recruited. In-depth interviews explored supportive and palliative care needs across the disease trajectory. Interviews were analysed independently by three investigators consistent with a grounded theory approach, and emerging ideas were compared and refined to define key patient experiences.

Results: Despite the medical treatment and supportive care available, there remains a gap in services addressing complex existential and psychosocial needs that were markedly valued by patients. Patient experience was characterised by a pervasive loss of all that encompassed their former sense of self and a focus on immediate needs.

Conclusions: Patients in this study had substantial needs, which were often not shared and not addressed by the current medical system of care. An improved multidisciplinary care model is indicated, which proactively (1) engages care coordination and advocacy; (2) minimises patients' sense of waiting and uncertainty through mapping out a plan, including involvement of palliative care in a timely fashion; and (3) actively invites discussion around goals and preferences for care to promote patients' sense of self.

Item Details

Item Type:Refereed Article
Keywords:health care professionals, malignant glioma, cancer trajectory
Research Division:Health Sciences
Research Group:Health services and systems
Research Field:Palliative care
Objective Division:Health
Objective Group:Provision of health and support services
Objective Field:Palliative care
UTAS Author:Lethborg, C (Dr Carolyn Lethborg)
ID Code:153784
Year Published:2014
Web of Science® Times Cited:35
Deposited By:UTAS Centre for Rural Health
Deposited On:2022-10-06
Last Modified:2022-11-10

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