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    • Aug 15
    • 2 min read

What is Neuropalliative Care and Why Does the World Need it?



Palliative care is an approach to caring for persons with life-limiting illnesses that focuses on improving the quality of life for patients and families. This includes addressing challenging symptoms like pain, providing emotional and spiritual support, having compassionate and honest conversations about diagnosis and prognosis, and preparing for the future.


Although palliative care is traditionally associated with end-of-life care and cancer, research supports its use throughout the course of illnesses and for many chronic diseases, including neurologic illness. Given that most neurologic illnesses are progressive, disabling, and incurable—including dementia, ALS, Parkinson’s disease, and many forms of brain cancer—it is surprising that palliative approaches haven’t been a bigger part of neurology.


Neurologic illnesses cause multiple dimensions of suffering for patients and families and many of these are different from patients with cancer. Unlike cancer, there is no hope for a cure for most neurologic illnesses, the prognosis is often more uncertain, disability is more pervasive due to early motor and cognitive involvement, and emotional/spiritual issues are common as neurologic illnesses directly affect core aspects of self, personality, and identity. Thus, the goal of neuropalliative care is to develop models of care that address the unique needs of patients with neurologic illness and their families.


The field of neuropalliative care has grown significantly over the past few decades, as has evidence that palliative care approaches are needed to improve outcomes for patients and families with neurologic illnesses.


However, there remain great needs to address including:

  • Enhancing care for persons with neurologic illness and their families by making palliative approaches standard

  • Improving education for healthcare providers (including both neurologists and palliative care doctors) to ensure that palliative needs are caught and addressed early

  • Researching to improve our understanding of the needs of persons affected by neurologic illness and our ability to meet those needs reliably

  • Advocacy to improve policies that affect persons living with neurologic illness ranging from better hospice guidelines to easier access to home-based support for patients and family caregivers


In 2019, the International Neuropalliative Care Society (www.inpcs.org) was founded to bring together a community passionate about improving care and caring. Our Mission is to improve standards of care for people living with neurologic illness and their families and Our Vision is a world where early integration of palliative care is the rule rather than the exception. In a short amount of time, this society has already made a great impact including providing education in neuropalliative care to healthcare providers around the world, helping other disease-focused nonprofits address palliative care needs and questions, and raising awareness, including with research funders (e.g. NIH). 


If you or a family member are currently affected by a neurologic illness, I’d encourage you to read through blogs related to this topic, check out other resources (such as the Parkinson Foundation Palliative Care Page), and connect with local, regional, or national resources. If you, like me, are passionate about changing care and this cause, please consider joining INPCS as a member or coming to our upcoming meeting.



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