Patients have to act ‘tough’ to get quality care

September 11th, 2008 - 1:54 pm ICT by IANS  

Washington, Sep 11 (IANS) Sometimes patients have to act ‘tough’ with indifferent physicians to get the best of healthcare, as happened with Michelle Mayer.Mayer, who suffered long years from scleroderma, a chronic condition in which the skin hardens, was dubbed a “difficult patient” before she could get physicians to accurately diagnose her disease.

“I don’t regret being difficult,” she wrote, “but I do regret that so many people must settle for substandard care because they lack what it takes to advocate for their own needs.”

“We must rethink a system that disproportionately rewards medical testing and procedures rather than thorough and complete histories and physical exams,” she said.

Mayer, an assistant professor at North Carolina University’s Chapel Hill School of Public Health, wrote an article about her bitter experiences as a patient. Mayer’s essay was paired with an essay from an Illinois physician, describing “difficult patients.”

Their viewpoints are quite different, but, as the magazine explained . . . brief office visits don’t allow enough time for patients and doctors to get to know one another, discuss medical issues and reach appropriate decisions.

Mayer described severe swelling and cold intolerance she developed in her hands 12 years ago while still a public health student. She was diagnosed with Raynaud’s phenomenon, a condition where small vessels of the hands and other parts of the body severely constrict in response to cold and stress, depriving surrounding tissues of oxygen.

“When I returned to the rheumatology clinic for a follow-up appointment, the doctor attributed my symptoms to stress, irritably dismissing me with, ‘You just have Raynaud’s.’ I knew that physicians often blamed stress for the ‘inexplicable’ ailments of young women.

“I refused to be dismissed so easily. I sought a second opinion from another rheumatologist at a different major academic medical centre, and he reiterated the same diagnosis.

“Although I truly believed that I had scleroderma, I wanted to be wrong. So I acquiesced and, by doing so, caused further delay in my diagnosis.

“But my husband prodded me to fight,” she wrote, “and soon my survival instincts kicked into high gear.”

Defying recommendations of scleroderma experts, she became pregnant and, over 26 months, gave birth to two healthy babies without causing additional harm to her own condition.

Both the essays have appeared in the September issue of Health Affairs.

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