Brain cancer (including grade II-III astrocytoma as well as glioblastoma) is a devastating diagnosis with poor prognosis. There is no cure for most brain cancers, and treatments extend life for only a minimal amount of time. Care options for patients with brain cancer often include palliative care, an interprofessional approach to improving function and quality of life for those with a serious illness; however, the experience of palliative care for patients with brain cancer and their families is frequently suboptimal, with many patients relying on family members to be their best advocates—a role for which those family members may not be suited or may not want to fulfill. Families want to spend time building memories, not navigating the healthcare system.
Optimizing palliative care may require improved coordination with the patient’s entire care team over the full course of illness—rather than the more typical episodic, symptom-based approaches that are reactive rather than proactive. Stakeholders in optimizing palliative care for brain cancer include patients, family members, social workers, nurses, neuro-oncologists, neurosurgeons, physical and occupational therapists, and others, each with a unique perspective on how best to offer palliative care. A brain cancer palliative care partnership has the opportunity to align these perspectives and develop research capacity for studying palliative care models that enhance meaning in the experience of living and dying with brain cancer. Our team is poised to bring together a wealth of resources and perspectives, including engaged patients, caregivers, neuro-oncology professionals, palliative care experts, and national brain tumor organizations.
*All proposed projects, including requested budgets and project periods, are approved subject to a programmatic and budget review by PCORI staff and the negotiation of a formal award contract.