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Diagnostic Ethics: Harms/Benefits, Somatic Symptom Disorder

Don't repeat DSM 5 mistakes

There are five possible explanations whenever someone presents to a doctor with physical symptoms that have not yet been diagnosed:

•the symptoms may be a manifestation of a medical illness that will be readily diagnosed after careful history, physical exam, and lab testing.

•they may be a manifestation of a medical illness, but one as yet undetermined -many medical problems remain unclear for long periods of time before accurate diagnosis is made.

•they may be a manifestation of one of the specific psychiatric disorders typically accompanied by physical symptoms (eg shortness of breath in Panic Disorder, loss of weight in Anorexia Nervosa, fatigue in major depressive disorder).

•they may be perfectly normal- it is part of human nature for people sometimes to have nonspecific and transient physical symptoms, especially when under stress.

•they may a manifestation of what DSM 5 calls Somatic Symptom Disorder- an exaggerated worry about physical symptoms that has become severe enough to warrant being labelled as mental disorder. .

This last category is clearly the most controversial, questionable, and subject to misunderstanding and misuse. I have argued in a number of blogs and papers that SSD is strictly residual- a very last resort to be considered only after the far more likely first four choices have been carefully ruled out.

It is already far too easy and common for doctors to dismiss their patients' concerns about physical symptoms with a spoken or unspoken 'It's all in your head.' This is insulting, stigmatising, and risks missing specific medical and psychiatric conditions that need treatment.

The current bad situation will be made much worse by the new and way too broad DSM 5 definition of SSD. DSM 5 will lead to three types of misdiagnosis: 1) mislabelling as mentally disordered people who really have a medical illnesses; 2) mislabelling as mentally disordered normal people who have nonspecific symptoms and health concerns; and, 3) missing a more specific and treatable psychiatric condition.

I tried but failed to get the DSM 5 work group to tighten its definition. As it stands, more than a quarter of patients with chronic pain and a sixth of those with cancer will qualify for a DSM 5 SSD diagnosis. This makes no sense and has stirred appropriate outrage from patients and advocacy groups.…

The DSM 5 damage is done and will not be quickly undone. The arena now shifts to the International Classification of Diseases 11 which is currently being prepared by the World Health Organisation and is due to be published in 2016. The open question is whether ICD 11 will mindlessly repeat the mistakes of DSM 5 or will it correct them?

I have invited Diane O'Leary to offer her advice to the experts working on ICD 11. She is a philosopher and author focused on the problem of denial of care for medical patients mistakenly diagnosed with somatic disorders. She writes:

"In a 2012 paper, the ICD 11 work group offered this summary of its approach to the diagnosis of somatic symptoms: 'The relevant diagnoses should include a combination of bothersome somatic symptoms with several other psychological features including beliefs about somatic symptoms and evidence of marked concerns about health and illness'. No one knows for sure what definition this will lead to, but it seems likely that ICD 11 will eventually opt for a broadly inclusive Bodily Distress Disorder that will closely resemble DSM 5's Somatic Symptom Disorder.”

"In my view, there is an ethical imbalance inherent to any broad definition that needs to be considered carefully before any decisions are made."

"Here is my message addressed directly to the ICD 11 work group. Admittedly, providing inclusive guidelines for BDD would have the plus of encouraging more mental health care for people who may need it. This seems to be what is guiding your reasoning. The trouble is that you cannot succeed in widening the gates of any diagnostic criteria without simultaneously failing to accurately filter those who enter. The more inclusive the criteria, the more will patients be captured by misdiagnosis".

"Defining Bodily Distress Disorder too narrowly may obstruct access to mental health care, but defining it too broadly will create the opposite problem of obstructing access to needed medical diagnosis and care. That’s inevitably how the chips fall because your category straddles the mental health/medical health divide. Every time a doctor errs in using your criteria to explain physical symptoms, a patient actually in need of medical care may be denied access to it."

"There is abundant evidence that this kind of error is already causing grave problems across several different medical diagnoses. According to a survey by the American Autoimmune-Related Disease Association, a staggering forty-five percent of autoimmune disease patients report having been denied medical care because doctors mistakenly diagnosed their symptoms as somatoform."

"Female patients under age 55 seen in the ER in the midst of a heart attack are seven times more likely than males to be sent home in error. The organisation 'Heart Sisters' notes that this problem arises from the doctor's incorrect presumption 'it’s all in your head' applies almost exclusively to women. The result: women are now twice as likely to die of heart attack as men."

"A recent informal survey by the National Organisation for Rare Disorders revealed that the majority of rare disease patients spend at least three years suffering in search of diagnosis. If rare disease were actually rare this figure might not be so disturbing, but there are tens of millions such patients in the US. Most of them fit your guidelines for BDD during their long diagnostic delay, as they repeatedly seek relief for unexplained symptoms that do enentually tirn out to have medical causes.”…

"Current diagnostic advice for general practitioners is inappropriate. The American Association of Family Physicians urges doctors to make early diagnoses of somatoform disorders in order to save time and to reduce costs. This is based on the common notion that somewhere between 25-75% of their patients’ symptoms are somatoform. Any diagnosis that could conceivably be misapplied to so many patients demands extraordinary caution in definition and application."

“You are responsible for the millions of medical patients whose diagnoses and treatments can be threatened by criteria for BDD. This is where the ethical aspects of your task should come squarely into view. No calculation of potential benefits can make sense of defining BDD over-inclusively. There are no benefits to BDD patients that could possibly outweigh the harm of increasing the number of heart attack patients, or autoimmune disease patients, wrongly denied medical care.”

"It is the right of access to available health care that teeters in the balance here, and WHO is morally committed to protecting that right. That should make you morally committed to standards that do not protect mental health care for a few by threatening medical care for many.”

Thanks Diane. Let's hope the ICD 11 work group heeds your wise advice.

The question naturally arises- How could DSM 5 get SSD so wrong and why is ICD 11 so likely to fall into the very same trap? It gains poignancy from the fact that the experts working on DSM 5 and ICD 11 are all very smart, highly experienced, and well meaning. The road to hell is paved with good intentions and bad unintended consequences.

The experts all have one fatal limitation- they suffer from all the disadvantages that accompany the advantages of being an expert. Gaining deep expertise in any area also carries a big price in narrowed perspective. When you devote a career to researching one topic, you lose unwittingly develop an intellectual conflict of interest. Experts always want to focus increased attention on their pet topic, want to expand its boundaries, and worry much more about missed than about mislabelled patients.

Anyone with common sense immediately recognises that the DSM 5 and the likely ICD 11 definitions of SSD are impossibly broad and nonspecific. Such excess could be offered only by otherwise sensible experts who have lost their common sense when it comes to their own field.

This potentially dangerous diagnostic exuberance of experts must be controlled by strict guidelines for change, careful vetting of new suggestions, and external scrutiny and monitoring. The free wheeling DSM 5 work group created its wildly over- inclusive SSD diagnosis because these controls were not in place. I fear ICD 11 will follow their sorry example- rather than learning from it.