Patients with disabilities often face health care providers who make inaccurate assumptions about their quality of life, which can lead to patriarchy and substandard care, according to an essay published this week. . New England Journal of Medicine (NEJM).
“The term ‘disabilityism’ is not as familiar as the term ‘racism’, but it is a poorly recognized concept in medicine,” said essay author and associate professor at the University of Washington. said Megan Morris, Ph.D., M.P.H. The Colorado Medical College at CU Anschutz Medical Campus focuses on health disparities for people with disabilities. “The health care system is not set up to deal with this population who are at serious risk of experiencing inequality.”
“Ableism” is a broad term that includes discrimination against people with physical, mental and intellectual disabilities.
Morris’s essay “Death by Ableism” was published this week in NEJM’s Perspective section. In it, she vividly documents her last days with her uncle David, who was developmentally disabled and endured periodic seizures.
“It took me two years to finally write what happened,” she said.
“I love you, Uncle David.”
David lived with his aging parents. He was sociable and friendly, routinely roaming the neighborhood, chatting and joking with his friends. He loved gin rummy, television sitcoms, and especially his niece.
“Each year on my birthday, he gave me a card signed in shaky cursive: ‘Love, Uncle David.’
In the essay, Morris details what happened on December 23, 2016, when he rushed his uncle, then 54, to the emergency room. He had aspiration pneumonia and dysphagia. His pneumonia improved, but swallowing was still difficult.
The regular care team has gone on vacation, so Morris suggests giving him a temporary nasogastric tube (NG) until his uncle returns. It delivers nutrition while reducing the risk of him eating, inhaling food, and getting pneumonia again.
The medical team resisted. They said it would be uncomfortable for him. They suggested being admitted to hospice without nutritional support. His family objected to this and, thinking he had come to an agreement with his doctor, he left the hospital.
However, the care team spoke with David’s parents and agreed that he would be discharged from the hospital without an NG tube and on a complete oral diet.
“To this day we are not sure if my grandparents knew what they agreed to,” Morris wrote.
fighting guilt
David developed pneumonia within a day. This time, Morris and her family reluctantly agreed to hospice care. Morris used her suction and sponge to remove endless drainage and saliva that “flowed out of her mouth like swift-moving lava.”
He died on New Year’s Eve.
Morris struggled with guilt, the feeling that he had not defended his uncle sufficiently, and the realization that he had suffered countless “disabled” minor injuries that could have resulted in his premature death.
Medical professionals often thought his disability meant he was incontinent, unable to speak well, or walk independently. Morris once posted a sign in his room listing his favorite discussion topics (country music and comedy) in an attempt to humanize him and get him better care.
“I’ve been sitting and listening to people for the last 10+ years. People with disabilities go to doctors, but the medical team doesn’t look them in the eye,” she said. “They make assumptions about their condition without discussing it with them.”
Morris cited a study in which some doctors in focus groups admitted they were trying to eliminate the caseload for people with disabilities.
“Some people think a life with a disability isn’t worth living,” she said. “But research shows just the opposite. People with disabilities report a similar quality of life to those without disabilities.”
prayer to david
Dr. Morris, who is also an investigator for the Adult and Child Health Outcomes Research and Delivery Sciences Consortium (ACCORDS) and the Center for Bioethics and Humanities at CU School of Medicine, hopes her essay will prompt medical teams to reconsider their views. I hope have a disability.
“I hope clinicians read it and think about the assumptions they make about providing care to their patients,” she said.
Morris survived his uncle’s death and is still working.
While packing his luggage, she finds a pack of pastel-coloured index cards. Each card had an affirmation written by him about his importance to his family and community. Each card is an attempt to beat the feeling of worthlessness.
“While reading the words on the card,” she writes.
Above: “Uncle David” is surrounded by his parents Eddie and Lesta Morris during his high school graduation.
