In the midst of the COVID-19 pandemic, there was ongoing fear that those in the disability community would be discriminated against and have worse outcomes than their able-bodied peers. Tragically, these fears would turn out to be true, as people with disabilities were at least twice as likely to die. Now, a new study has revealed that patients with Down syndrome, specifically, were increasingly given do-not-resuscitate (DNR) orders at much higher rates than the able-bodied population.
In a press release, Stephanie Santoro, assistant professor of pediatrics at Harvard Medical School, director of quality improvement research for the Down Syndrome Program at Mass General, and co-author of the study, said people with Down syndrome and a diagnosis of COVID-19 — or COVID pneumonia — were six times more likely to be given DNRs than similar patients without Down syndrome. “It seems like a lifetime ago, but early in the pandemic, extreme steps like rationing ventilators were being discussed,” she said of her reasoning behind the study. “In the Down syndrome community there was a lot of worry, of wanting to protect the rights of people with Down syndrome.”
Noting that people with Down syndrome were known to get sicker and need more supports when they contracted respiratory infections, Santoro said the research team had to ensure the DNRs weren’t being given merely because the prognosis for someone with Down syndrome was so much poorer. “We tried to compare some comorbidities — like intubation rates, if they had been in the ICU, or if they had come from acute care — but it didn’t pan out to have a similarly high odds ratio as the diagnosis of Down syndrome,” she said, adding, “Might people or their families be choosing DNR status when admitted with high acuity, life-threatening disease? We also wondered whether the folks with Down syndrome were older or if there was some other intervening covariable that would explain the high odds ratio of DNR status. But we couldn’t find anything that explained it.”
Though there are health conditions known to be associated with Down syndrome, medical advancements have been able to address many of them. “[I]n general, people with Down syndrome are leading healthy, happy, productive lives,” Santoro said. “I think the DNR status rate should likely be the same as for people without Down syndrome.”
This study is not an anomaly; a survey done in the United Kingdom likewise found that people with disabilities were being pressured to sign DNRs during the pandemic. Additionally, the National Institute for Health and Care Excellence also told doctors that they should assess patients with disabilities for “frailty” before deciding whether or not they could be given life-saving treatments.
“[T]he thing that caused me more distress was when the government decided they were going to publish the frailty guidance,” one survey respondent said. “I looked to see how frail I am and am I going to be offered a ventilator if I need one. The reality according to that guidance was no, not necessarily, And, then thinking how can I prove my worth to people to make sure I get that treatment if needed.”
