Raised Awareness and Need For Improvements to End of Life Care in Neuromuscular Disorders: Ambereen Mehta, MD, MPH


The palliative care physician and assistant professor of medicine at Johns Hopkins Bayview Medical Center provided perspective on current state of end-of-life care for neuromuscular disorders and areas to improve upon. [WATCH TIME: 4 minutes]

WATCH TIME: 4 minutes

"It [palliative care] is still not implemented equally across the diseases or clinical centers. There are discrepancies in how excellent end-of-life care can happen, and that’s based on access to the health care professional who have neurocognitive experience or end-of-life care expertise."

The term “palliative” was introduced in the mid 1970s as a description of an approach that supports patients by focusing on improving their quality of life through symptom control, both physical and psychological, rather than on the diagnosis and treatment of their underlying disease. Most neuromuscular disorders are chronic and progressive and associated with a shortened life expectancy; however, despite these known facts, palliative care remains underutilized.

At the 2023 Muscular Dystrophy Association (MDA) Clinical and Scientific Conference, held March 19-22, in Dallas, Texas, Ambereen Mehta, MD, MPH, chaired a session on end-of-life care, and the considerations for it. Mehta, a palliative care physician and assistant professor of medicine at Johns Hopkins Bayview Medical Center, has been at the forefront in advocating for better end-of-life care programs, and the raising the level of awareness for what these programs can do.

In an interview with NeurologyLive®, Mehta provided perspective on the current state of end-of-life care and how it differs from other hospice care or palliative care. She outlined the ways in which the field has progressed, as well as areas that still lack, such as the overall knowledge of palliative care.

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