People with Down syndrome more likely to receive COVID DNR status
By Louise Kinross
Americans with Down syndrome and a diagnosis of COVID-19 pneumonia were six times more likely to have do-not-resuscitate (DNR) orders placed at admission than patients with the same illness without Down syndrome, according to a study in the American Journal of Medical Genetics, Part C.
Scientists examined billing codes and claims data for 1.7 million patients at 825 U.S. hospitals between January 2019 and June 2022, looking at DNR status for people with and without Down syndrome. They found those with Down syndrome had a six-fold chance of having DNR status ordered for COVID pneumonia compared to those without the diagnosis of Down syndrome.
"The reason this matters is that if people with Down syndrome are more often listed as DNR then it could have implications on the care offered at end of life," says co-author Dr. Stephanie Santoro, a clinical geneticist and director of quality improvement research at the Massachusetts General Hospital Down Syndrome Program in Boston. "During COVID, people in the disability community were concerned that there could be rationing of ventilators or differences in care offered to patients if they had DNR listed in their chart."
The study was the brainchild of Dr. Jennifer Jett, who works in the department of hospice and palliative care at Intermountain Health in Salt Lake City, Utah. "She had a great interest in palliative care and we found there isn't much research looking at end-of-life and palliative care for people with Down syndrome," Stephanie says. "COVID was still new and we were trying to wrap our minds around it on a medical side. People in the disability community were concerned about how this might play out for people with intellectual disability. We were seeing restrictions on people being able to visit their loved ones in group homes and hospitals. We cite an article by Dr. Caitlin Chicoine called Ableism at the bedside, and her experience with how DNR status was being listed for a 60-year-old patient with Down syndrome."
In the Chicoine article, the authors "contend that pervasive ableism among medical providers leads to a variation in the medical care options that are provided to people with intellectual disabilities and their families."
Stephanie says there were concerns that "people with and without disabilities should be treated equally throughout the lifespan, including at end of life."
It's important to note that the DNR orders in the new study were placed at admission, not later in the course of a patient's treatment when their condition had worsened.
Stephanie says research shows that people with Down syndrome do become more ill with respiratory infections, so the scientists wondered if these patients had presented with more severe symptoms, and that was the cause for the increase in DNR status. "But we couldn't find any covariables, or intervening variables, that explained the difference in DNR," she says. In other words, the patients with Down syndrome were not more likely to be listed as DNR because they were sicker than other patients.
"I think most of our team were pretty surprised by it and not sure what to make of it, and a little unsettled by it as well," Stephanie says. "In general, people with Down syndrome are leading healthy, happy, productive lives. I think the DNR status rate should likely be the same as for people without Down syndrome."
Stephanie says more data and studies on people with Down syndrome and end-of-life care are needed. "We need to ask people with Down syndrome directly what their thoughts on end-of-life care are," she says. "I don't know of any studies that have looked into that in detail. This is an open question for researchers and people who are interested in this field."
Dr. Stephanie Santoro sees patients with Down syndrome through the lifespan, and also does prenatal consultation for pregnant women expecting a child with Down syndrome. She notes that the Down syndrome program at Massachusetts General follows patients as children and adults.
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