Familiar faces speak as patients (AAFP annual scientific assembly)
■ Physicians and those they care for come together to explore state-of the-art science and the day-to-day reality of life affected by disease.
By Victoria Stagg Elliott — Posted Nov. 3, 2008
Nicole Johnson, MPH, would like physicians to be a little more positive. And as a former beauty queen and current diabetes activist, she hopes that telling doctors this will enhance the care she and other patients receive.
Johnson was diagnosed with type 1 diabetes in 1993, when she was a 19-year-old college sophomore. Her physician told her to drop out of school and stop entering beauty pageants. Those activities, he said, were now too stressful. She also should forget about bearing children.
"I was told my life was over ... and the worst part was that I believed it," she said, during a plenary session at the American Academy of Family Physicians' scientific assembly in San Diego, Sept. 17-21. After long-fought efforts to get her disease under control, she earned two master's degrees and won the 1999 Miss America Pageant. And she is a mother.
Johnson was one of several well-known people who detailed their experiences as part of the AAFP's new "Face of Disease" program. These lectures were paired with clinical insights by experts in the field.
"We wanted to try new types of learning, and this is one avenue we hadn't tried. We always hear from experts and family physicians. We never really get it from the patients," said Bradley P. Fox, MD, chair of the AAFP's subcommittee for scientific programming and a family physician in Erie, Pa.
The patients who spoke at the meeting generally praised the physicians in their lives, but also offered suggestions.
Johnson, for example, urged physicians and other health professionals to look at her face and see her as a human being, not just a list of blood glucose numbers. She also felt that outcomes would improve if efforts were made to get patients more engaged in the treatment processes.
"Healing can come to patients' hearts and minds when they are offered a chance to be a part of the circle of care -- when you're not just part of the problem, when you can help be part of the solution," said Johnson.
Such involvement was supported by Steven Edelman, MD, professor of medicine in the division of endocrinology, metabolism and diabetes at the University of California, San Diego. He was the expert who spoke after Johnson. Dr. Edelman, who also has type 1 diabetes, teaches patients to figure out their own insulin dosages. "It gets them motivated," he said.
The therapeutic value of listening
When she was in her late teens, actress Patty Duke began experiencing extreme mood swings -- steep lows followed by equally extreme highs, a cycle that continued until she was diagnosed as having bipolar disorder. She started taking lithium at age 35. Before taking this medication, there would be months when she couldn't get out of bed, followed by periods of extravagant spending and anonymous sexual experiences.
"I remember wishing the doctor would listen to me, even if what I had to say was gobbledygook," said Duke. She urged physicians to ask patients more often about suicidal tendencies. "There isn't anything you could ask a person like me that could make me worse."
Stanley Oakley Jr., MD, a bipolar disorder expert who spoke after Duke, said it was vital to distinguish this illness from unipolar depression, and suggested several signs that may differentiate the two. Bipolar disorder tends to have a stronger family history, and suicide attempts are more common, said Dr. Oakley, an associate professor of psychiatry at East Carolina University's Brody School of Medicine.
He also advocated checking metabolic factors, such as thyroid function, and reviewing medication side effects to hunt for a possible root cause. "We want to make sure we're not causing [bipolar symptoms]."
The family may be hurting, too
Duke and others implored physicians not to forget about patients' families when they are addressing specific health issues.
James "Butch" Rosser Jr., MD, chief of minimally invasive surgery at Beth Israel Medical Center in New York, had gastric bypass surgery eight years ago to treat his morbid obesity.
But his wife, Dana Rosser, for years withstood the collateral damage brought about by his weight problem. She curtailed her social life because her husband could not fit in the seats of many venues. She also held herself responsible for his weight.
"I stopped doing a lot of social things. That really hurt me," she said. "And I felt that the pressure was on me to cook meals that were delicious and nutritious. If I didn't make the meals correctly and he gained weight, it would be my fault."
Dr. Rosser spoke of the stigma and shame that can be attached to the outward manifestations of his condition.
"The victims of obesity have no place to hide," said Dr. Rosser, who weighed as much as 460 lbs. before his surgery. "I was so embarrassed. There was sadness in my heart."
Other speakers included actress Sally Field, who has osteoporosis, and Grace Anne Dorney Koppel, a lawyer and wife of journalist Ted Koppel, who spoke about chronic obstructive pulmonary disease.