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“The best available research before our study suggested that as of the late 1990s, fewer than 1 percent of people with intellectual disabilities had ever documented or discussed their end-of-life wishes,” says Mc Ginley.
“But with this study, we found that about 62 percent of the EMS providers we surveyed had treated someone with an intellectual or developmental disability who had these forms.” That disparity points to the need to illuminate this understudied area of how people with intellectual disabilities are engaging in end-of-life discussions, according to Mc Ginley.
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A new study by researchers at the University at Buffalo provides a groundbreaking look at how advance care planning medical orders inform emergency medical service (EMS) providers’ experiences involving people with intellectual disabilities. In New York, the Medical Orders for Life-Sustaining Treatment form (MOLST) allows individuals to document what measures health care providers, including EMS providers, should take near the end of a patient’s life.
Still, this sociocultural context must be strongly considered as future research explores how people with intellectual disabilities engage in end-of-life discussions.
Since January 2016, Medicare pays for patients to have advance care planning conversations with medical providers.
Yet little research on end-of-life decision-making has been done on the growing population of older Americans with intellectual disabilities, which the American Association on Intellectual and Developmental Disabilities defines as a disability characterized by significant limitations in learning, reasoning, problem solving, and a collection of conceptual, social and practical skills.