From geralt [Image], 2021, https://pixabay.com/illustrations/alzheimers-disease-dementia-senior-6690308/ Pixabay CC BY 2.0
Background:
Palliative care has long been a cornerstone in fields like oncology and cardiology, but neurology has been playing catch-up. The reality is that neurological diseases bring a unique set of challenges that make palliative care not just beneficial, but essential. Unlike many other serious illnesses, neurological diseases often affect cognition, personality, and communication, and fundamental aspects of what makes a person who they are. This means that patients may struggle to articulate their needs, experience grief over the loss of identity, and require complex decision-making support as their condition progresses.
Additionally, the course of neurological diseases is often unpredictable. Some conditions, like ALS or advanced Parkinson’s, follow a more progressive and well-defined trajectory, while others, such as multiple sclerosis, stroke, or traumatic brain injury, can be highly variable, with periods of stability punctuated by sudden declines. This makes it difficult to apply traditional palliative care models, which were largely developed for diseases with more linear paths, like cancer.
Despite this, research on neuropalliative care is still in its early stages. Many neurological patients experience symptoms; pain, fatigue, shortness of breath, mood disturbances, and existential distress, that are just as severe as those in patients with advanced cancer or heart failure, yet they are far less likely to receive palliative care support. The International Neuropalliative Care Society (INPCS) recognized this gap and convened an expert panel to establish research priorities that will help bridge the divide and improve care for individuals living with serious neurological illnesses.
Design and Participants:
The INPCS Research Committee brought together an interdisciplinary panel, including clinicians, researchers, patients, and care partners. Through literature review and discussion, the committee identified key gaps in current research and established priority areas to advance neuropalliative care.
Results:
Three main research priorities were identified.
- Patient- and Care Partner–Centered Symptoms and Outcomes of Interest: Expand research on nonmotor symptoms (e.g., pain, fatigue, psychological distress) that affect QOL.
- Develop validated tools for symptom measurement, ensuring inclusivity of diverse populations.
- Development of Effective Neuropalliative Care Interventions and Delivery Models
- Test new interventions to address physical, psychosocial, and spiritual suffering.
- Develop and implement scalable models of neuropalliative care across various settings (hospital, outpatient, home-based care).
- Improving Goal-Concordant Care
- Improve accuracy of prognostication tools for neurological diseases.
- Enhance and develop communication strategies between providers, patients, and care partners.
- Develop shared decision-making aids tailored to individuals with cognitive and communication impairments.
Commentary:
This consensus statement makes a strong case for the urgent need to expand research in neuropalliative care. While fields like oncology and cardiology have long embraced palliative approaches, neurology is still catching up. The unpredictable progression of neurological diseases, combined with their impact on cognition, communication, and identity, creates a unique set of challenges that traditional palliative care models don’t always address. The research priorities outlined here lay a solid foundation for improving care and advancing health equity in neurology.
That said, as an epileptologist, I couldn’t help but notice the absence of epilepsy in this discussion. Epilepsy is a chronic neurological condition that often carries a significant psychosocial and existential burden, yet it rarely gets the same attention in palliative care conversations as neurodegenerative diseases. There’s an opportunity, and, I’d argue, a real need, to integrate epilepsy into the broader neuropalliative care framework.
Bottom Line:
Neuropalliative care is an essential but under-researched area in neurology. Key research priorities include better symptom assessment, intervention development, and goal-concordant care. Addressing these gaps will enhance patient and care partner experiences and promote equitable access to palliative care for neurological conditions.
Reference:
Lau WK, Fehnel CR, Macchi ZA, et al. Research Priorities in Neuropalliative Care: A Consensus Statement From the International Neuropalliative Care Society. JAMA Neurology. Published online February 3, 2025. doi:10.1001/jamaneurol.2024.4932.
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