Community-based neuropalliative care

Abstract

Community-based palliative care is defined as palliative care delivered outside of the hospital and outpatient clinics. These settings include the home, nursing homes, day programs, volunteer organizations, and support groups. There is strong evidence outside of the neuropalliative context that community-based palliative care can reduce hospital costs and admissions at the end of life. Research that focuses on specialized community-based palliative care for neurologic disease have similar findings, although with significant variability across conditions and geographic locations. Several of these studies have investigated home-based care for neurologic conditions including dementia, Parkinson's disease, multiple sclerosis, brain tumors, and motor neuron disease. Other work has focused on incorporating palliative care models into the treatment of patients with neurologic diseases within nursing home settings. Similar to nonneurologic community-based palliative care, little has been published on patient and caregiver quality-of-life outcomes in such models of care, although the emerging data are generally positive. Future studies should explore how best to provide comprehensive, cost-effective, scalable, and replicable models of community-based neuropalliative care, patient and caregiver outcomes in such models, and how care can be adapted between and within specific patient populations and healthcare systems.

Keywords: Brain tumors; Community; Dementia; Home visits; Motor neuron disease; Multiple sclerosis; Neurodegenerative; Nursing homes; Palliative care; Parkinson's disease.