Background
In Australia, brain cancer is the sixth leading cause of cancer burden and it carries high rates of morbidity and mortality. While brain cancer treatments are advancing, the physical and psychosocial needs for patients and carers can be extensive and ongoing. Despite the need for palliative care in this cohort, little is known about engagement with palliative care services and resources for patients with brain cancer.
Objectives
The objective of this project was to ascertain perspectives of clinicians, patients, and carers regarding their experiences and perceptions of brain cancer resources and service delivery throughout Australia, in relation to palliative care.
Methods
Qualitative data were collected via semi-structured interviews with 102 brain cancer key informants including clinicians, patients, and carers representing paediatric, adolescent, young adult and adult populations nationally. An online questionnaire was completed by 96 patients and carers. Questions involved participants’ use and perception of brain cancer resources and their experiences of brain cancer care service delivery and gaps. Qualitative content analysis was undertaken.
Findings
Clinicians described unmet needs for dealing with challenging end-of–life medical requirements and side effects and cited a lack of guidelines in palliative care for brain cancer. Late referrals to palliative care was problematic because of the complexity of psychosocial issues associated with brain cancer and the high support needs of carers. There was an unmet need for patient and family palliative care resources and after-hours support. Difficult prognostication coupled with significant disability requires a high level of support for a patient with brain cancer to stay at home. This can place major demands on family carers who often face difficulty accessing integrated support. When care needs exceed informal support networks, there are not adequate accommodation options for patients.
Implications for practice
Education and training for clinicians about palliative care for people with brain cancer may assist in facilitating earlier referrals. Tailored and targeted palliative care resources are needed to support patients and carers to navigate the unpredictable trajectories in brain cancer.
Conclusion
More work is urgently needed to improve access to palliative care and support patients and carers affected by brain cancer.