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What's in a Name?

Posted By Norman Rasmussen, Sunday, October 09, 2011
What term do you prefer to use to describe patients with medically unexplained symptoms? I have used the "heartsink" term with family medicine resident physicians when teaching them to do the Linking & Reattribution intervention with MUS patients. I think it is a useful term in helping the resident physician understand and cope with her/his mixed emotions in caring for the high utilizing "worried well" patient, but the term could easily be construed as demeaning and insensitive. Thus, I am ambivalent about placing this term, but further discussion is certainly warranted.

There are more pejorative terms than "heartsink" out there such as "the "hateful patient" (Groves, 1978) or "fat file" patient (Short, 1994). More recently, I have seen the term "sick listing" (Nilsen et al., 2011) when describing the difficult or challenging patient with medically unexplained symptoms.

What do others think is the preferred way of addressing patients with medically unexplained symptoms?

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Mac Baird says...
Posted Sunday, October 09, 2011
I agree that it will be helpful to use a less negative term if that permits people to find articles, etc that cover the same topic-given a better name we might use now. As you know patients in Rochester, MN did not like to come to a "chronic illness consultation" but did feel OK about coming to a "reflective interview" when we were studying the MUS population. None of us knew quite what that meant so at least patients and physicians agreed to those interviews/consultations just out of curiosity! :)
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Sandy Blount says...
Posted Sunday, October 09, 2011
The number of people on earth who experience mental or emotional pain as ontologically different from physical pain (western cultures and people who study medically unexplained symptoms) are in a minority. Terms like "somatization" reflect the cultural biases of this minority, implying as it does that people are mis-perceiving life pain in their bodies. It can certainly be seen as a culturally insensitive, possible even arrogant term.
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Dave Clarke says...
Posted Sunday, October 09, 2011
When a physician experiences heartsink at seeing a particular patient, the reason for it is the physician's inability to diagnose and/or treat the patient. But the term places the blame for the feeling on the patient, not the physician. The more pejorative terms (including gomer, turkey and crock plus those mentioned by Norm) place even more blame on the patient. I completely agree with Sandy that "terms like "somatization" reflect the cultural biases of [the western] minority, implying as it does that people are mis-perceiving life pain in their bodies."

For the last few years a group of a half dozen clinicians from around the US who have diagnosed and treated MUS patients for at least a decade have held biweekly teleconferences. Last year we spent months discussing terminology and eventually settled on Psychophysiologic Disorders. We thought it emphasized the Mind-Body connection appropriately and clearly, wasn't pejorative, didn't blame the patient, offered a better call to action toward diagnosis and treatment than the term MUS and wouldn't put off clinicians who were new to the concept.
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Norman Rasmussen says...
Posted Sunday, October 09, 2011
Hi Mac,

You make very good points. Labels that are respectful contribute much to our objective of patient-centered and collaborative care. Labels are often initially perceived by the provider as either neutral or actually making a useful contribution to the doctor-patient relationship but over time in some cases acquire negative meaning.

In the WONCA chapter, Dr. Ivbijaro's peer review committee (which
included Professor Sir David Goldberg)recommended a change in terms from "medically unexplained symptoms" to "bodily distress syndrome." In the peer review feedback, the committee recommended this change "which takes away from the therapeutic nihilism suggested by the term medically unexplained symptoms and better supports patient engagement." Dr. Goldberg is using the term bodily distress syndrome in his draft of the Primary Health Version of ICD-11.

My question for you and others on the MUS Work Group......What do you like and dislike about the term "Bodily Distress Syndrome?"
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Bill Gunn says...
Posted Sunday, October 09, 2011
Hi all, I agree with what has been said. We used psychophysiological disorders when I was at Duke ten years ago. Its such a mouthful that it was hard to use with patients but it does more accurately describe what is going on. It's a little different and a broader group but we used "challenging clinical interactions" as well to try to convey both healer and patient as part of the situation. Particularly given that a "difficult" patient for one resident all of a sudden was not difficult with the next resident.
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Mac Baird says...
Posted Sunday, October 09, 2011
Bodily Distress Syndrome (BDS) works for me, as it seems
more inviting than psychophysiologic disorder. But whatever name we use now, we can be prepared to change it over time. Similarly, as we search into the past for relevant published papers, I do think we will need to have some memory of past terms, however they are currently viewed, to find our predecessors' work. Eventually, we'll be the predecessors!

In my interactions with patients facing these symptoms with no easy name we seem to agree when I observe:" "Bodies don't lie. Even though we cannot name this right now, something is out of balance. Do you have any thoughts about what that might be?" "Does someone near to you and trusted have thoughts about what could be related to this for you?" Before too long we often explore pressures, themes or some issue that is unresolved, previously
unspoken and relevant to the patient.

Many clinicians find similar paths toward a respectful discovery process no matter what "label" we might prefer to use as for a billing code or paper about this topic. But when we don't have an agreed upon name for this, then we cannot track it and study it as well. That is why CJ Peek keeps writing about the value of a "lexicon" of names on which a group of interested people agree. It helped improve our understanding of electricity (ohms, volts, etc) and it can help us with this dilemma as well.
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Dave Clarke says...
Posted Sunday, October 09, 2011
I agree with Dr Baird's comments. Patients don't need a label as much as they need the exploration Dr Baird describes. When patients comprehend what is going on, I don't usually hear them ask "what do you call this?"

But we clinicians would benefit from improving consensus about the lexicon as Dr Baird points out. There is no perfect term and that is likely why we have so many of them. Body Distress Syndrome is non-specific as to etiology and could as well describe any symptomatic illness, even those caused by a diseased organ. It also resembles labels like Irritable Bowel Syndrome and Fibromyalgia in that clinicians might be inclined to end diagnostic inquiry once the label is applied instead of conducting one of Dr Baird's explorations.

Psychophysiologic Disorders isn't ideal either with its ten syllables and a prefix perceived negatively by patients. The group I work with has taken to abbreviating it PPD which is easier to pronounce, gives equal weight to mind and body, may be less pejorative in that form and is consistent with other abbreviations like PTSD and ADHD that the public accepts. (There is a small risk of confusion with post-partum depression and the TB skin test.) My group also felt this term encouraged further diagnostic discussion with the patient to uncover underlying issue(s)
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