Mapping end-of-life care for patients with neurological conditions in German hospices: a point prevalence survey

Access to palliative care for patients with neurological diseases remains limited. Contributing factors include difficulties in predicting disease trajectories, resource constraints in long-term care and challenges in identifying the end-of-life phase-often compounded by communication and cognitive impairments.

We conducted a national point-prevalence survey among German inpatient hospices using an online questionnaire.

The response rate was 44%, with 83% of participating hospices providing complete datasets. Most patients in hospices suffered from oncological diseases (n=785; 77.3%), including primary brain tumours (n=102; 10.0%). At the time of the survey, neurological diagnoses accounted for approximately 5% of hospice admissions. While 51% of hospices reported having access to neurological consultation, this was usually informal or ad hoc. 19% reported no current access to a neurologist but considered such collaboration desirable.

This survey provides an overview of the current representation of patients with neurological conditions in German inpatient hospices. The findings reveal limited structured collaboration between neurology and palliative care, alongside structural and societal barriers that complicate timely hospice referral and end-of-life planning. Strengthening interdisciplinary cooperation, enhancing neurologists' engagement in palliative care and expanding specialised outpatient support for patients and families are essential to improving equitable and needs-based end-of-life care for individuals with neurological conditions.