• Sara Faithfull, Karen Cook, and Caroline Lucas.
• University of Surrey, European Institute of Health & Medical Sciences, Guildford, UK. S.Faithfull@surrey.ac.uk
• Palliat Med. 2005 Oct 1;19(7):545-50.

AbstractIndividuals with a primary malignant brain tumour require intensive palliative care services because of the symptoms and cognitive problems they experience. Many of these patients stay with their families at home, being supported by palliative care home teams rather than being admitted for hospice care. The provision of respite care and community services to support these families goes largely unreported. This study arises out of a need to review support services for patients and carers within one cancer and palliative care service. This retrospective case analysis identifies that there are a range of services used in the community to support patients with primary malignant brain tumours but that only a small proportion receive inpatient hospice care. District nursing services were extensively used but also a high number (74%) of patients were admitted to local hospitals for symptom management. This paper attempts to explore the services utilized but also questions the apparently limited provision of hospice care for supporting individuals in the palliative care stages of such an illness. This paper considers the illness trajectory, the complex symptoms experienced by patients and respite services utilized. Issues of those engaged in informal care giving and in the provision of support for those with a primary malignant glioma are also considered.

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