Personal story illustrates multiple barriers to health care, need for navigators

Mary Otto

About Mary Otto

Mary Otto, a Washington, D.C.-based freelancer, is AHCJ's topic leader on oral health and the author of "Teeth: The Story of Beauty, Inequality, and the Struggle for Oral Health in America." She can be reached at mary@healthjournalism.org.

Image by FutUndBeidl via Flickr

Image by FutUndBeidl via Flickr

Elizabeth Piatt begins the narrative of her reluctant journey into the Medicaid dental care system this way:

“In the spring of 2010 a terribly infected tooth forced my sister, Veronika, to the emergency department (ED). This story began, however, several months before. It is flica story of Medicaid, access to the best care, information and misinformation, and the gap between the haves and the have-nots.”

Piatt’s piece, “Navigating Veronica: How Access, Knowledge and Attitudes Shaped My Sister’s Care” was featured in February’s Health Affairs. (AHCJ members have free access to Health Affairs.)

Piatt, an assistant professor and chair of the Sociology Department at Hiram College in Hiram Ohio, brings a social scientist’s eye and a story-teller’s flair to the tale.

The task of helping her poor, overwhelmed sister, who is disabled, find the care she needs is fraught with personal challenges.

“I have to take a deep breath whenever Veronika calls me, and sometimes I just don’t answer the phone,” Piatt admits. “Over the years, the constant stress of our relationship has left me feeling burnt out.”

But those frustrations are dwarfed by the complexities the two confront in their odyssey through the Medicaid system, with its bureaucratic hurdles and scarcity of dentists, particularly the oral surgeon Veronika needs to perform a complicated tooth extraction.

Together, they weather agonizing delays, paperwork glitches, and long drives to a succession of appointments before the procedure is finally performed.

“It took four doctors, four health care facilities, nine months and 160 miles of driving, but the infected roots were finally removed,” Piatt reports.

“I can’t help but think about what would have happened if Veronika hadn’t called me.”

As Piatt observes, her sister is just one of legions of poor beneficiaries, struggling to find care in a complex system. And they are not all lucky enough to have a sister or friend equipped to serve as a navigator.

A more formalized system of patient navigators could help Medicaid beneficiaries get more of the care they need, Piatt believes. The navigators might also ease the challenges faced by the health care providers who have their own struggles with the system, she says.

“Just as I had come to feel overburdened by and hardened to my sister’s problems, health care providers serving low-income patients can also become overwhelmed with the level of attention these patients require,” Piatt writes.

By helping manage patient problems, navigators could lighten the load of healers as well, she suggests.

Piatt reports she found a new capacity for compassion by stepping back from the experience and examining her feelings about her sister’s complex needs.

She writes that she hopes the story of the journey will help others, including health care workers, do the same.

Related

Reporter covers dental care challenges faced by people with disabilities: Elizabeth Simpson offered readers of The Virginian-Pilot a detailed look at this issue in a January story that centered on the experiences of a local woman and her family.

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