AAN: Neuropalliative care ‘much broader practice’ than hospice

The American Academy of Neurology noted palliative care can benefit individuals with neurologic diseases and may lead to longer survival when provided early in the disease process.

In a position statement featuring ethical guidance for neurologists on providing palliative care for diseases such as stroke, Parkinson’s disease and ALS, statement author Lynne P. Taylor, MD, of the University of Washington in Seattle and a fellow of the American Academy of Neurology, suggested clinicians discuss palliative care with their patients early. This may maximize symptom management and start the process of advance care planning, according to the authors.

“Palliative care is a term that has become synonymous with hospice, but it is actually a much broader practice,” Taylor said in a press release. “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, improving lives with symptom control. This position statement outlines how clinicians, physicians and advanced practice providers should provide palliative care for people living with neurologic disease so they can have the best quality of life possible.”

In the statement, the authors noted that explaining a patient’s prognosis aids in their understanding of the disease and helps them set care goals. Conversations regarding care goals should occur often, which prepares patients and their families to make decisions as the disease progresses

“The American Academy of Neurology has seen the field of neuropalliative care continue to grow,” Orly Avitzur, MD, MBA, FAAN, president of the AAN, said in the release. “Neurologists have been at the forefront of providing palliative care to people with neurologic conditions. Our hope is this AAN position statement serves as an important tool for neurologists, providing important ethical guidance as they deliver the highest quality

care to people with diseases of the brain, spine, and nerves throughout their lives.”

The authors noted people with stroke benefit from regular checkups for assessing recovery and helping to improve communication skills, and patients with stroke who can still make decisions should complete advance care planning since it may help in the event of another stroke.

Early advance care discussions may help people with progressive neurologic diseases before they lose their ability to make decisions. Those with ALS may benefit from making treatment goals early in the disease, as well as from consultation with specialists who can identify ways for people to communicate, such as via eye movements, to help participate in care decisions, according to the authors.

The position statement also offered guidance for infants and children with serious neurologic disease, people with disorders of consciousness, people with irreversible disease and people transitioning to end-of-life care.