Adding to the confusion about what is a DS

[KathrynK]

There is now another way to confuse patients. There is a presentation at the upcoming IFSO meeting in London about the "modified duodenal switch" which seems to refer to any of the variations of the original two-anastomosis DS. The "MDS" refers to those operations now called single-anastomosis duodenal switch (SADS), single-anastomosis loop duodenal switch (LDS), single-anastomosis duodenoileal bypass with sleeve gastrectomy (SADI-S), and stomach intestinal pylorussparing surgery (SIPS). This MDS term has been used in the past, but most surgeons still publish papers using their favorite terminology for their twist on the procedure.

If I were a prospective patient today, and the surgeon told me he was doing a "modified duodenal switch", I might be easily convinced I was getting the "real" DS, with a modern tweak. They MUST standardize the terminology, and my concern is they are going to pick the simple term, "Modified duodenal switch". But to me, if should be the "mini duodenal switch"" following the tradition of the "mini gastric bypass". Or, change the name of our procedure, to "original DS" or ODS, as in your odds of keeping the weight off. Maybe there are better ideas about standardizing the terminology.

I wonder if it would do any good to write the IFSO president before the meeting in London in August to advocate for global standardized terminology so that patients know which surgery they are consenting to.

To add to the evolving views about DS, Dr Antonio Torres was invited to speak about whether the single anastomosis procedure should be the standard of care. He is a prestigious bariatric surgeon from Madrid who is the past president of IFSO, which is the International Federation for the Surgery of Obesity and Metabolic Disorders, and this is the leading international meeting about bariatric surgery.
I was interested to learn that half of the bariatric surgeries in the world are now sleeve gastrectomies.

 

[Munchkin]

Yikes. The terminology is not supposed to confuse the patient.

 

[DianaCox]

I have found an email address for Torres and am drafting a letter ... having someone review it ...

 

[DianaCox]

This is what I sent tonight after it was reviewed by a knowledgeable person:

Dr. Torres,

I am a long-term (14 years) duodenal switch patient and advocate for the DS. My bona fides: I have a PhD in medical biochemistry/molecular biology, and I am an attorney (I am a biotech/pharma patent attorney); my pro bono work is helping people fight insurance denials of the DS, and therefore, I follow DS and other bariatric procedure evidence-based medical publications closely.

I am also part of a large online bariatric community with focus on the DS, and we have VERY serious concerns about the nomenclature and patient disclosures (websites, in-office and informed consent) being used by many if not most of the surgeons who are promoting “Modified DS” in a way that is very confusing to the layperson, in particular for pre-op patients. We are counseling far too many very angry post-op patients who had NO IDEA that they were getting a far different single anastomosis procedure from the standard-of-care DS they thought they were getting. This is an ethical and legal issue that we would like the IFSO to address at the meeting in London later this summer.

The DS community would like to strongly urge the surgeons offering and recommending single anastomosis variant procedures based on the DS to devise standardized nomenclature and patient information that CLEARLY distinguishes these new procedures from the standard-of-care duodenal switch. Far too many patients are showing up on our community message boards feeling like they were the victims of “bait-and-don’t-switch” – they believed they were getting a minor variation of the standard-of-care DS procedure, which was touted as being “safer” and “better,” only to find out later that the procedures are very different. As you well know (but the patients don’t), these procedures have a very long absorptive alimentary tract, do not have selective fat malabsorption, have a risk of bile reflux, cannot eat the same way standard-of-care DSers can (in particular high fat), and have little guidance on how to supplement based on published long term literature. In addition, in the US, these procedures are NOT standard of care, do NOT have CPT insurance codes and there have been issues not only with fully informed consent of the patients, but also that some insurance companies are retroactively objecting to paying for non-standard-of-care procedures which have been misleadingly coded.

We would like to ask that as part of your meeting, you and other surgeons offering “MDS” procedures, in conjunction with DS surgeons, agree on nomenclature in disclosing your procedures to patients in ways that made it unequivocally crystal clear that they are VERY different from the DS, with emphasis on specifics such as single vs. dual anastomoses; possibility of bile reflux; lack of selective fat malabsorption; very different nutritional requirements from the DS; lack of long-term results, and possible insurance issues. Patients cannot give fully informed consent if they are not fully informed of all differences and consequences of a new procedure vs. the well-known standard-of-care procedure, especially when the nomenclature for the procedures is (deliberately?) confusing.

I am not trying to get into an argument about whether the single-anastomosis procedures are valid (I have my own thoughts about this, including that they are likely better than lapband and RNY, and even sleeve, but that they are still unsupported by adequate long-term results) – my concerns are about the ethical and legal consequences of confusing nomenclature and inadequate informed consent.

We in the DS community have already struggled for 15+ years of insurance companies using the negative results of the Scopinaro procedure to denigrate and deny access to the DS, due to confusion between the nomenclature “BPD” and “BPD/DS,” which nomenclature was stubbornly adhered to for too long, despite pleas from the patients to change it. Now we are facing a similar situation with the “MDS” vs. DS nomenclature, but in this case, the intent of creating confusion seems to be deliberate on the part of the MDS surgeons, trying to get their surgery with a very different mechanism of action to benefit from the known safety and efficacy of the DS. It is a widely held opinion (among patients and standard-of-care DS surgeons, as well as lawyers who have been consulted) that this is unethical and improper, and that it is the responsibility of the MDS surgeons to ensure that this confusion doesn’t affect patient choices and patient care.

It is strongly suggested that “single anastomosis” be used in the nomenclature of all procedures which only have a single anastomosis (e.g., SIPS, SADI, LoopDS, Mini DS), and that duodenal switch NOT be used in the name OR the patient information which describes these single anastomosis procedures, which would be misleading. All patient disclosure documents should CLEARLY distinguish between the two procedures, not emphasize the similarity. These MDS procedures must stand on their own based on peer-reviewed EVIDENCE and long term results, and must be clearly differentiated from the DS in patient information and informed consent documents. And is should be clearly disclosed that there is no long-term evidence that these procedures are better than the DS, which is what far too many patients are being told.

It is urged that this issue be addressed right away, as we are aware of litigations being contemplated and/or commenced resulting from lack of informed consent based on these issues. But the legal issues for individual surgeons pale in comparison with the ethical issues inherent in what appears to be deliberate confabulation and confusion in obtaining informed consent between these very different procedures and the standard-of-care duodenal switch. These issues should be of great concern for the reputation of the bariatric profession in general.

I (and likely others in the community) would be happy to talk to you about this – there are many many online patient complaints and expressions of anger and betrayal about this issue, as well as discussions regarding legal action, and this should be of concern to every surgeon who is performing these surgeries.

 

[Susan in Tennessee]

Excellently worded letter! Great job.

 

[KathrynK]

Diana, thank you for such a persuasive and passionate letter. The strength of your advocacy should merit a trip for you to London to sit on a panel about this issue!
This letter should go to more decision-makers in the bariatric surgery community. There is another talk, deeper in the program, about informed consent, and this should go to that speaker as well, I will look for her name and affiliation and pass it along to you.
On behalf of all of the prospective and confused patients who deserve the whole truth, thank you!

 

[southernlady]

Well done, Diana

 

[writegirl]

There is now another way to confuse patients. There is a presentation at the upcoming IFSO meeting in London about the "modified duodenal switch" which seems to refer to any of the variations of the original two-anastomosis DS. The "MDS" refers to those operations now called single-anastomosis duodenal switch (SADS), single-anastomosis loop duodenal switch (LDS), single-anastomosis duodenoileal bypass with sleeve gastrectomy (SADI-S), and stomach intestinal pylorussparing surgery (SIPS). This MDS term has been used in the past, but most surgeons still publish papers using their favorite terminology for their twist on the procedure.

If I were a prospective patient today, and the surgeon told me he was doing a "modified duodenal switch", I might be easily convinced I was getting the "real" DS, with a modern tweak. They MUST standardize the terminology, and my concern is they are going to pick the simple term, "Modified duodenal switch". But to me, if should be the "mini duodenal switch"" following the tradition of the "mini gastric bypass". Or, change the name of our procedure, to "original DS" or ODS, as in your odds of keeping the weight off. Maybe there are better ideas about standardizing the terminology.

I wonder if it would do any good to write the IFSO president before the meeting in London in August to advocate for global standardized terminology so that patients know which surgery they are consenting to.

To add to the evolving views about DS, Dr Antonio Torres was invited to speak about whether the single anastomosis procedure should be the standard of care. He is a prestigious bariatric surgeon from Madrid who is the past president of IFSO, which is the International Federation for the Surgery of Obesity and Metabolic Disorders, and this is the leading international meeting about bariatric surgery.
I was interested to learn that half of the bariatric surgeries in the world are now sleeve gastrectomies.

I'm not at all surprised to learn that over half the WLS in the world are sleeve gastrectomies. There are quite a few surgeons who do no other procedures than the Lapband and the VSG. The reasoning is simple: they can do the bare minimum of WLS training and education and start churning out literally hundreds of VSGs a month. The VSG is a cash cow with minimal risk that the surgeon will find themselves in a malpractice suit. I don't know if you guys have been thusly bombarded yet, but the facebook WLS communities are being blasted with videos and really shitty advice from a predatory WLS named Dr. Duc Vuong. He runs a site called "SleeveAcademy"--it's a paid membership portal. Someone posted a video by him a day or two ago on Dr. Boyce and Williams's Facebook group where Vuong literally fatshames. He also only performs Lapband and VSGs and claims he got into WLS "for the money." However, this snake oil salesman is getting a following in the WLS community, which, sadly seems to be comprised of far too many idiots who walk blindly into their surgeries and are disturbingly uneducated about their respective procedures. It's easy to follow blindly some creep with an M.D. after his name.

The sad fact is that many, if not the majority, of surgeons--even the ones who can do the standard of care original DS--are pressured by the medical industry to intentionally look for shortcuts and ways to do procedures that take up less ER time and keep the patient under anesthesia for the least amount of time.

I agree with you that the new bariatric patients are easily confused by the modified versions of "DS"--I feel really fortunate that I had a qualified surgeon who does traditional DS right in my town--I know how lucky I was, but the only reason I know that is because I am a member here and learned that there were other surgeons out there doing modified procedures and selling them (and billing them) as DS.

As for writing the IFSO president, it certainly could not hurt. That said, it would carry much more weight if we could get a DS surgeon to also write in and voice concerns over the confusion caused by referring to the modified procedures as DS with no clarification that this is, in fact, an original DS. The IFSO argument would probably be that the difference is already indicated by the "BPD" in front of the "DS." We know this is inadequate, but it seems that with the rise of surgeons getting into WLS "for the money" and the predatory bent in the medical industry toward the MOB patient, we will see less and less clarifications because the system is designed to keep patients dumb and compliant, not educated and vocal. jmho

 

[writegirl]

I replied before reading your post @DianaCox. You're a total hero. No other word for it. And I say that as an English PhD. Thank you for giving voice and lending your expertise so selflessly to all of us.

 

[DianaCox]

A DS surgeon reviewed what I wrote before I sent it - and he has tried to raise concerns with his colleagues but has been largely ignored. Follow the money.

 

[writegirl]

A DS surgeon reviewed what I wrote before I sent it - and he has tried to raise concerns with his colleagues but has been largely ignored. Follow the money.

You're an excellent writer. More importantly though, your advocacy is exactly what surgeons should be willing to pay attention to and learn from; after all, they are performing surgery on real people who have to then live with the alterations the surgeons have done to their (the patients') bodies. Sadly, I think we're going to see a worsening trend toward more surgeons becoming like the Dr. Vuong's of the world because, yes, they are following the money.

 

[Munchkin]

Great job Diana! Thank you!