ETHICS IN THE NEWS - FOCUS
One news story brought into focus through a Q & A session with an expert at the Center for Ethics
If you take a moment to read an interview with one of the girls from Le Roy, you will see a young woman who is burdened with the physical manifestations of a mental illness that is painfully beyond her control. For almost a year, national attention has been targeted on the mysterious illness shared by over a dozen girls from Le Roy High School in Genesee County, New York. Parents have tried to blame environmental factors for the disorder, the symptoms of which include tics, fainting, and paralysis. Many experts classify the illness as a conversion disorder and believe that the origins are psychological. Although there are numerous physicians, neurologists and psychiatrists weighing in on the issue the prognosis remains perplexing. The disorder is complex because it implies a relationship between neurology and psychology.
The story was covered in this week’s Ethics in the News. We interviewed the Assistant Director of the Center for Ethics Neuroethics Program Dr. Karen Rommelfanger, who is currently researching these types of disorders. She has offered a few insights about the Le Roy epidemic.
Why is it so difficult to classify this disorder?
The disorder of the girls in Le Roy is representative of something much larger. These types of illnesses are categorized more broadly as ‘medically unexplained illnesses.’ Psychological movement disorders are paradigmatic of many medically unexplained illnesses such as psychogenic blindness, paralysis, fevers, and pain disorders. The symptoms of the girls from Le Roy are unique and especially powerful because you can see them, yet we think of them as having a psychological origin.
How does the diagnosis affect the patients’ perception of the illness?
No one wants to hear “psycho” in his or her diagnosis. It would be hard for the girls from Le Roy’s parents not to have a reflex of blaming themselves for a stress related illness. Many of the parents have tried to find alternate explanations. There’s a lack of confidence in physicians to give this diagnosis because it’s often hard to identify a psychogenic illness versus an actual tremor or dystonia. There are no advocacy groups because patients don’t want to be a part of the club they don’t think they belong to. For patients and their parents it’s important to see neuroscience data. I’m not saying an illness isn’t real until we have neuroscience data, but the data helps patients understand what’s going on.
How would you describe the stigma around these types of illnesses?
In general, a patient will get a different response from their communities and from doctors about stress or depression than if they broke an arm. One of the problems is that there isn’t a vocabulary to describe these illnesses. One step forward would be reshaping the language in which we describe illness. For my research, I interview physicians and neurologists and listen to them talking about psychogenic illness. Psychiatrists are often frustrated as they often are viewed as receiving patients who have “waste-basket” illnesses because physical causes aren’t generally attributed to psychiatric diseases. In fact, a lot of psychiatric disorders are now being recognized as having a brain-based mechanism.
In the story some of the girls are accused of faking the illness, is this possible?
Conversion disorder, a psychiatric diagnosis, is by definition not intentional. However, many neurologists would disagree saying they can’t tell the difference between those whose symptoms are intentional and those who are. Some recent data suggest that people with psychogenic symptoms have abnormalities in parts of their brains related to a sense of “voluntariness.”
What’s interesting is that if you asked a few of the Le Roy girls whether their illness is psychogenic they would say no, that theirs is real. In that way, patients separate themselves from others who they think are faking it. This exemplifies the perception of a hierarchy among the patients both in a social context and with their illnesses.
Have the physicians of the Le Roy girls handled the relationship between neurology and psychology appropriately?
The illness is psychiatric in origin. In an interview, one of the female neurologists described the patients as great girls and good people. But, who was calling their character into question? What’s interesting is that neurologists are not really equipped to handle or diagnose psychiatric disorders but the patients want to have their illness legitimized by a “brain” doctor. They don’t want to go to a psychiatrist. Neurologists feel obligated to take on a role outside of their depth.
Another physician who treated the girls classified the disorder as PANDAS, related to streptococcal virus. Some of the girls got better and claimed that their sickness was legitimate because it was cured by “real” medicine, implying that the girls who did not take this form of treatment were faking. When the doctor was asked whether or not he inquired about the psychological history of his patients he said he didn’t have time. However, we now know that many of the girls were experiencing significant life stressors. There are obvious gaps here between neurology, general medicine, and psychiatry.
How can we start to understand this disconnect?
Ultimately, I see this is a Neuroethics question. It is important to consider how we use neuroscience to define disease and how we will use neuroscience data to challenge our assumptions about disorders of the “mind.” We are beginning to uncover clues about the biological basis of psychogenic disorders. It will be interesting to understand the process of how these neuroscience data may influence physician attitudes and practices with these patients, as well as the social stigma associated with psychogenic disorders.
What is the fate of the Le Roy girls and others who are dealing with psychogenic illness?
Part of the problem is that doctors will say that it is very curable (and it is), however, 50-90% of patients will never get better. The most crucial factor is to identify the disorder early and have the patient understand the need for psychiatric help. Fortunately, many of the girls have recovered and I hope this trend will continue.
What will it take to change the system?
In my research I’m finding that psychogenic disorders are under addressed. The crisis for neurology is that there are no standard measures of care for psychiatric related cases, which at Emory, is a third of some of the neurologists’ patients. What I really hope is that we create a better resource for physicians. I also hope to provide a resource for patients. This resource would be composed of knowledge and recommendations shared by members of the scientific and medical community. The resource could also inform changes in health care policy. If an illness is classified as psychogenic, it often isn’t reimbursed. The annual cost for these types of illnesses is estimated to be over 100 billion dollars.
