There is so much more to be done for the most vulnerable citizens.
Dr. Kate Martin, the associate dean of graduate medical education at the UNLV School of Medicine, makes that point in an opinion piece in the current print edition of JAMA Neurology as she describes a close relationship with her intellectually and physically disabled brother.
“People with all forms of disability experience worse health outcomes and greater difficulty using healthcare than the rest of the population,” writes Martin, who often served as an advocate for her brother, Michael, or her grandmother, who suffered with dementia and compromised vision and hearing. “Despite being at higher risk for chronic health conditions, such as diabetes, hypertension, and heart disease, they receive fewer cholesterol screenings, blood pressure checks, and other...preventive healthcare. These disparities in health, differences in health outcomes based solely on being a member of a socially disadvantaged group, are injustices.”
Martin, also an associate professor in the Department of Family Medicine, will teach a course this fall to undergraduates in the Honors College, “Healthcare Redesign.” She notes that “people with disabilities not only meet impediments in the delivery of healthcare...assistance with reliable transportation, employment and housing is equally important. These social determinants of health can mean the difference between a life of self determination and one of complete dependence on others.”
“I thought by teaching a course to people who might be future doctors or engineers, to get them thinking about people who are not often thought about when creating a solution, that maybe I could introduce some empathy to the whole process,” says Martin, who believes too often people with disabilities are unnecessarily institutionalized and not listened to. “I want to teach my students how to empathize with people they may not know, to try to understand. There’s a better way to treat people. We can do so much more than this.”
In the opinion article, Martin said she had often accompanied her brother, Michael, to the doctor’s office. Her brother suffered frequent epileptic episodes and made sounds others thought unnatural. He died last year at age 49. Martin said it wasn’t unusual for an attending physician to talk to everyone in the family about her brother's condition except for her brother.
“While it was true Michael could not easily articulate many wants and needs, he understood a lot,” writes Martin, who says physicians often would not make eye contact with her brother. “No matter how much we said or did on his behalf, it was not the same as allowing him to say it for himself in his own way.”
Martin said she was also with her brother at the doctor’s office -- his appointment was running an hour behind -- when a receptionist asked the family to move Michael to the children’s area because of the noise he was making.
Too many physicians, Martin says, didn’t treat her brother with the dignity and respect other patients received. Others wouldn’t take his low reimbursement Medicaid insurance.
“He struggled pretty significantly with access and getting what he needed,” says Martin, who said that after much trial and error, her family found caring physicians for her brother.
Martin said the family had worked hard to keep their grandmother out of a nursing facility, but it was difficult finding the kind of medical and social infrastructure necessary to allow her to stay independent. “I only wish she could have remained home as long as she wanted to be.”