The palliative care physician and assistant professor of medicine at Johns Hopkins Bayview Medical Center discussed the types of resources clinicians can pull from to expand neuropalliative care for patients with neuromuscular disorders. [WATCH TIME: 3 minutes]
WATCH TIME: 3 minutes
"First, to patients, care partners, and neurologists, to ask. The more you ask for it—at the institution you’re at, or organization you’re with—maybe they just need to hear the words and get the referral in."
In 1990, the World Health Organization recognized palliative care as a distinct specialty dedicated to relieving suffering and improving quality of life for patients with life-limiting illnesses or serious injuries. Since then, there has been steady growth of this type of care. Between 2000 and 2011, the prevalence of palliative care in US hospitals with 50 or more beds has increased more than 157%.
Neuropalliative care, which focuses specifically on patients with neurological disorders, has expanded in recent years, but has been held back by the lack of neurologists and specialists to treat these conditions. To date, neuropalliative care has mainly been offered to patients with amyotrophic lateral sclerosis (ALS), Parkinson disease, dementia, brain tumors, Huntington disease, and Duchenne muscular dystrophy. There have been concerted efforts to raise awareness of the benefits of this approach, most recently at the 2023 Muscular Dystrophy Association (MDA) Clinical and Scientific Conference, held March 19-22, in Dallas, Texas.
At the meeting, Ambereen Mehta, MD, a palliative care physician and assistant professor of medicine at Johns Hopkins Bayview Medical Center, gave a talk on the care and considerations of end of life treatment for patients with neuromuscular disorders. Prior to her discussion, she sat down with NeurologyLive® to discuss the issues behind expanding these programs, overcoming challenges with limited resources, and organizations that may help onboard new neuropalliative teams.