Woman assisting older man to walk in assisted living facility hallway

Neurologists who provide palliative care to people with neurologic disease have a new set of ethical guidelines to consult.

The American Academy of Neurology on Monday published an updated position statement, covering issues encountered by physicians who care for people living with life-altering illnesses such as stroke, Parkinson’s disease and amyotrophic lateral sclerosis. 

Among the authors’ key recommendations is that palliative care discussion begin early in the disease course. The authors envision a dynamic caregiving process, with regular conversations between clinicians, patients and surrogate decision-makers. This helps maximizes symptom management and start the process of advance care planning, they wrote. 

In addition, best practices include engaging the patient in any way possible, within the limitations of their disease, they said. For example, in syndromes where the patient remains aware but their body is paralyzed, physicians should identify ways to communicate, such as with eye movements, so the patient can participate in decisions about their care.

“Neurologists provide palliative care to people living with life-altering neurologic illnesses, not just at the end of life but throughout the course of a disease,” co-author Lynne P. Taylor, M.D., of the University of Washington in Seattle, said in a statement. “This position statement outlines how clinicians, physicians and advanced practice providers should provide palliative care … so they can have the best quality of life possible,” she said.

The Clinical Guidance in Neuropalliative Care was published online Monday in the journal Neurology. It was developed by the Ethics, Law, and Humanities Committee, a joint committee of the AAN, American Neurological Association and Child Neurology Society.