According to an essay published this week in the New England Journal of Medicine (NEJM).
“The term ‘ableism’ isn’t as well-known as the term ‘racism,’ but it’s a concept that’s under-recognized in medicine,” said trial author Megan Morris, PhD, MPH, associate professor at the University of Colorado School of Medicine at CU Anschutz Medical Campus who focuses on health disparities among people with disabilities. “The health system is not configured to deal with this population which is at serious risk of experiencing disparities.”
Capableism is a broad term that includes discrimination against people with physical, mental and intellectual disabilities.
Morris’ essay, “Death by Ableism,” was published this week in the Perspective section of the NEJM. In it, she vividly recounts the final days of her uncle David, who had developmental disabilities and endured routine seizures.
“It took me two years to finally write about what happened,” she said.
“Love, Uncle David”
David lived with his aging parents. He was outgoing and friendly, regularly walking around the neighborhood, chatting with friends and telling jokes. He loved gin rummy, TV sitcoms and especially his niece.
“Every year for my birthday he would give me a card signed in his quivering script, ‘Love, Uncle David.’
In her essay, Morris detailed the events of December 23, 2016, when she and her parents rushed her then 54-year-old uncle to the emergency room. He had aspiration pneumonia and swallowing problems. Her pneumonia improved, but swallowing remained difficult.
With his regular care team gone for the holidays, Morris offered to give his uncle a temporary nasogastric (NG) tube until they got back. This would provide nutrition while decreasing the risk of him eating, inhaling food, and getting pneumonia again.
The medical team resisted. It would be uncomfortable for him, they said. They suggested that he be admitted to the hospice without nutritional support. The family objected and left the hospital thinking they had made a deal with the doctors.
But the medical team spoke to David’s parents who consented to his discharge without an NG tube and on a full oral diet.
“To this day, we still don’t know if my grandparents knew what they were consenting to,” Morris wrote.
A fight against guilt
Within a day, David developed pneumonia. This time, Morris and his family reluctantly consented to palliative care. Morris used suction and a sponge to clean up the endless drainage and saliva that “poured from his mouth like fast-moving lava”.
He died on New Year’s Eve.
Morris struggled with guilt, feelings she didn’t defend hard enough for her uncle, and the realization that he had suffered countless “ableist” slights that could have resulted in an untimely death.
Medical professionals often assumed his disability meant he was incontinent, unable to speak well or walk independently. Morris has previously posted signs in his room listing his favorite talking points – country music and comedy – in a bid to humanize him and get him better care.
“I have sat and listened to people’s stories over the past decade and more. Disabled people will go to the doctor and the health team will not look them in the eye,” she said. said “They make assumptions about their conditions without discussing it with them.”
Morris cited a study in which some doctors in focus groups admitted to trying to rid their workload of people with disabilities.
“Some assume that a life with a disability is not a life worth living,” she said. “But studies show just the opposite. People with disabilities report a similar quality of life as people without disabilities.
A prayer for David
Morris, who is also a researcher with the Consortium for Research and Delivery of Health Outcomes for Adults and Children (ACCORDS) and the Center for Bioethics and Human Sciences at CU School of Medicine, hopes her trial will inspire teams doctors to rethink their vision of those with disabilities.
“I hope clinicians will read it and maybe think twice about the assumptions they make when providing patient care,” she said.
Morris is still working on his uncle’s death.
While packing her things, she found a packet of pastel index cards. Each card contained a statement he had written about its importance to his family and community. Each card, an attempt to push away feelings of worthlessness.
“As I read the words on the cards,” she wrote, “I prayed that in the end David would know he was appreciated.”
Top photo: ‘Uncle David’ is surrounded by his parents, Eddie and Lesta Morris, at his high school graduation.
#Essay #Medical #providers #lack #training #caring #people #disabilities