Re: The new somatic symptom disorder in DSM-5 risks mislabeling many people as mentally ill
Controversy over SSD is indeed about where the line between medicine and psychiatry should be drawn, because SSD continues to play the same primarily medical role as its former cousins, regardless of the new inclusiveness. SSD is centrally an explanation for physical symptoms, one physicians will look to when faced with medical diagnostic challenges.
While it’s right to be concerned that this new line in the sand will generate needless psychiatric care, the real problem with SSD is really much more grave: it sanctions refusal to face the seriousness of the risk of error, the problem of medical harm that results when patients with medical problems are mistakenly denied medical care.
In medicine, differential diagnosis is the strongest sign of commitment to minimizing error. If it’s not visible throughout the process, the very notion of diagnosis begins to lose its meaning. It is highly problematic that the DSM-V eliminates the reminder that diagnoses of SSD should be made through this rigorous process, meeting the very same standards required for any other explanation of physical symptoms – but the DSM-V does not create this problem. Lack of concern in psychiatry about patients whose medical symptoms are mistakenly diagnosed as psychiatric passively mirrors a lack of concern about those patients in the medical community.
In medicine, resistance to the notion of error in somatoform diagnoses is so thoroughly pervasive that there exist no precautions of any kind, no protocols, and no forms of oversight to ensure that as few patients as possible are mistakenly diagnosed. It is absurd to pretend that physicians are any less tempted by answers that involve less work than any other human beings, or any less drawn to answers that free them from the specter of failure, but when it comes to somatoform diagnoses this pretense is endemic.
Given that physicians are not psychiatrists, isn’t it reasonable to expect that the reverse would be true – that the problem of potential error in diagnoses of SSD would receive more attention than the problem of error with other diagnoses? Given that patients with physical symptoms explained by diagnoses of SSD are denied further medical care for those symptoms, isn’t it reasonable to expect that the problem of potential error would be paramount in all discussions of SSD?
This oversight is so very serious, and yet so insistently silent, that we’ve grown accustomed to accepting it – so much so that the APA comfortably eliminates all the medical specifics, leaving physicians entirely free to make use of the label of SSD in whatever ways they happen to prefer. While removing any checklist inevitably increases risk of error, the APA finds no cause to even mention the physical suffering and threat of harm created when medical symptoms are mistakenly diagnosed as psychiatric, tending instead to the urgent matter of emotional struggles for “the many people who are suffering with both SSD and another medical diagnosis”.
Silence about the problem of error can only be the result of ignorance about the numbers of patients who present their physicians with truly unusual medical problems – with the hoof-beats of zebras rather than horses. There are nearly 30 million people in this country with rare diseases. Otherwise put, 1 in 10 Americans head to their doctors’ offices with diseases likely to be unfamiliar, diseases almost sure to lead to diagnostic confusion. Rare disease patients outnumber cancer patients by more than 2 to 1, even including all those whose cancer is now in remission. It is tough to quantify the role somatoform diagnoses play in the average 7-year lag to diagnosis of rare disease, but related statistics are immensely worrisome.
Though autoimmune disease is not rare, a recent survey revealed that 45% of patients with autoimmune disease have battled mistaken somatoform diagnoses. No doubt those 10.5 million patients found their genuine medical symptoms “very distressing, resulting in significant disruption of functioning”, meeting the first criterion for SSD. Moreover, in the need to find relief, all 10.5 million would have proceeded to display “excessive and disproportionate thoughts, feelings and behaviors regarding [their] symptoms”, justifying their mistaken diagnoses in a way that meets the second criterion.
Figures like these are common and should be central to any discussion of SSD. If physicians resort to these kinds of diagnoses so freely and so frequently as to mistakenly deny medical care to almost half of all patients with autoimmune disease, what’s happening to patients with rare diseases? Does the medical community have no ethical obligation to try to protect the 30 million people whose diseases are so unfamiliar as to positively invite the label of “medically unexplained”? Does removal of that phrase from the DSM somehow eliminate the APA’s own ethical obligation to these 1 in 10 Americans?
Because SSD will always be easier and less threatening for the physician than continued investigation of unusual or confusing symptoms, and because error consigns patients in need of medical care to potential lifetimes of untreated suffering and threat of harm, true credibility for SSD must be hard earned, rigorously earned, earned with humility about error and with visible commitment to protecting patients from it.
The history of silence in the medical community about the problem of error in somatoform diagnoses should feel to us not like a gentle warning, but like a blaring brass band. It tells us that when it comes to the border between medicine and psychiatry, the medical community has a pathology of its own, a glaring lack of maturity that allows the field to accept the risk of error without ever having considered the severity of its potential harms, or any systematic measures for reducing the risk of those harms. The medical community has not earned the keys to the kingdom of the borderlands between medicine and psychiatry. For the APA to hand them over so freely, with so little guidance and with such thorough disregard for the suffering of misdiagnosed patients, is negligent in the extreme.
1. American Psychiatric Association: www.psychiatry.org/File%2520Library/Practice/DSM/DSM-5/DSM-5-Somatic-Sym...
2. NIH Office of Rare Disease Research: http://rarediseases.info.nih.gov/AboutUs.aspx
3. American Cancer Society: http://www.cancer.org/cancer/cancerbasics/cancer-prevalence
4. In Need of Diagnosis, Inc: http://www.inod.org/home0.aspx
5. American Autoimmune Disease Association: https://www.aarda.org/infocus_article.php?ID=15
6. National Institute of Environmental Health Sciences: http://www.niehs.nih.gov/health/materials/ autoimmune_diseases_508.pdf
7. American Psychiatric Association: www.psychiatry.org/File%2520Library/Practice/DSM/DSM-5/DSM-5-Somatic-Sym...
Competing interests: Dr. O'Leary is author of the forthcoming book, Patient, a memoir exposing the problem of denial of care for rare disease patients. She is also Executive Director of The Sneddon's Foundation.