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. In the article "A Future We Must Dare to Imagine," she writes:
“People with all forms of disability experience worse health outcomes and greater difficulty using health care than the rest of the population. 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 health care. These disparities in health, differences in health outcomes based solely on being a member of a socially disadvantaged group, are injustices.”
She often served as an advocate for her brother, Michael, or her grandmother, who suffered with dementia and compromised vision and hearing.
Martin, 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 health care...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,” said 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 said, 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,” said Martin, adding 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.”
Serving the vulnerable
Earlier this year, Martin, who came to realize that there were striking care-management similarities between her brother’s experiences and those encountered by her grandmother, graduated from the master’s program in gerontology at the University of Massachusetts-Boston. The program, which helped focus Martin’s research into how health services are delivered to vulnerable and marginalized populations, proved to be the catalyst for her “Healthcare Redesign” course, which will teach students how to apply human-centered design thinking to social issues in the health care system.
A text for the course, “Health Design Thinking,” shows that design challenges in the health care space “range from reducing unnecessary cesarean deliveries to reimagining hospital waiting areas and creating medical devices that enable more patients to access treatment.”
The text's authors, Dr. Bon Ku and Ellen Lupton, stress that “design for health care extends well beyond improving the layout of lobbies and treatment rooms and creating more ergonomic medical devices.” They said “many opportunities for design intervention arise from the area of service design,” including improving the process of obtaining informed consent to building awareness of treatments that are available but underutilized in the community.” The authors said a service design project “might include designing clear and engaging educational material and developing new protocols for how clinicians exchange this information with patients and the public.”
Martin, who said it was Michael’s “multiple barriers to accessing the health care system that motivated me to become a physician,” believes the Southern Nevada community could benefit from the creation of “A Center of Excellence in Aging and Disabilities” at UNLV — one that includes regular input from families of individuals with disabilities.
Research at the center, she said, could address several questions, including: ”What are the most efficient ways to achieve independent living among persons aging with disability?”
In the end, Martin said, the center would work toward “a future we must dare to imagine,” where those with disabilities get the chance to realize their full potential.
“Growing up with my disabled brother, Michael,” Martin said, “undoubtedly shaped the person I am today and the career decisions I’ve made. He showed me a future I would not have dared to imagine.”