Showing posts with label BMI restrictions. Show all posts
Showing posts with label BMI restrictions. Show all posts

Monday, July 17, 2017

Obesity and Joint Replacement, Part 1: Are BMI Restrictions Ethical?


Should "obese" people be required to lose weight before being permitted to get joint replacement surgery? Or a kidney transplant? Or before receiving fertility treatment? Or to donate an organ?

The question of weight restrictions on access to healthcare is one of the most critical ethical questions in healthcare today. It is certainly one that causes great difficulties for many people of size as they seek the best medical care and quality of life possible. As one doctor notes:
We talk about racial disparities in care and gender disparities in care, but there's actually weight disparities in care because these patients aren't getting needed therapy because of their weight.
Many people of size are denied access to Total Knee Arthroplasty (TKA, a.k.a. knee replacement) or Total Hip Arthroplasty (THA, a.k.a. hip replacement), based solely on Body Mass Index (BMI). They are similarly denied access to many other procedures as well, but let's focus on joint replacements today.

It will come as no surprise to readers that I oppose such restrictions, but let's take a moment to discuss fairly the arguments for and against BMI cut-offs and weight loss counseling for joint replacement surgery.

Obesity and Joints

One risk associated with obesity that is pretty consistent between studies is the negative effect of a higher weight on joints like knees and hips.

For most risks, an association between obesity and a particular condition (diabetes, for example) is a correlation, not causation. Many type 2 diabetics are obese, for example, but fatness does not cause diabetes, or all fat people would be diabetic (they aren't), and no skinny person would have type 2 diabetes (many do). It may well be instead that fatness is merely a symptom of an underlying condition (like the insulin resistance of PCOS) and that condition predisposes towards diabetes, rather than fatness is an actual cause of diabetes.

But for joint issues, there is more evidence for a causal relationship. Extra weight creates extra stress on the joints, and the knees are especially vulnerable. As a result, fat people do get more arthritis, mostly in the knees but perhaps also in the hips, and this can create significant pain and mobility issues for some.

However, there may be more to the story, because fat people get more hand arthritis too, and that is not a weight-bearing joint. Some have speculated that there may be metabolic and/or inflammatory factors predisposing to arthritis in heavier people. Lipedema, an adipose tissue disorder which affects many people of size, has also been shown to increase risk for knee arthritis, independent of weight.

Whatever the relationship is, at some point many people of size experience joint pain and struggle to figure out how to deal with that, which at some point might include surgically replacing the joint.

Alternatives to Joint Replacement 

Of course, it's important to remember that joint replacement is not the only option for treating arthritic joints. It's always important to explore the least-invasive options available before resorting to surgery. Many doctors will require patients to do several of the following therapies before considering joint replacement surgery because they may help the patient delay or completely avoid joint replacement surgery:
  • Physical therapy to strengthen and balance the muscles around the knees
  • Stretching exercises to increase flexibility and loosen tight muscles
  • Pilates, water exercise, or directed exercise programs to increase strength and flexibility
  • Injections of various types into the joint to help reduce inflammation and improve viscosity 
In addition to these traditional therapies, many patients have found help with:
  • Acupuncture to reduce pain and loosen tight muscles
  • Chiropractic care to keep the pelvis and back in better alignment and reduce joint stress
  • Focused bodywork, like medical massage, fascial release, etc. to reduce pain, loosen tight muscles, and release scar tissue and restrictions
  • Orthotics for better arch support and improved gait
  • Muscle re-education programs (like the Alexander Technique or Rolfing) to address muscle strength imbalance and gait issues
  • Various nutritional supplements (glucosamine, bone broth/gelatin, chondroitin, etc.) to help repair cartilage in the joint area and reduce pain
Stories of people of size using these and other ideas can be found here and here.

However, despite all these measures, some people of size have to consider at some point whether or not to get a joint replaced.

Of course, surgery in larger people is more technically difficult and always carries more risk for anesthesia accidents and surgical site infections, so surgeons aren't wild about doing surgery on fat people. That is understandable.

But should these challenges mean they should completely DENY access to knee or hip replacement surgery to fat people? Is it ethical to deny patients access to medical procedures because of weight restrictions? Is it ethical to require obese patients to undergo weight loss treatment before they can even be considered for joint replacements?

These are the critical ethics questions faced by orthopedic care providers these days.

Ethics Questions

One orthopedic surgeon, interviewed for an article about the ethics of denying high-BMI people access to knee replacement surgery, stated:
Obesity often causes osteoarthritis of the knee at relatively young age and these patients present themselves at your out-patient clinic demanding a total knee replacement as a solution for their problem...Bariatric surgery can definitely be an important part of treatment, but only in a multidisciplinary context in which psychological treatment is also applied. 'Obesity is a disorder which will only pass after specific treatment by a whole team of specialists. On top of that, if the obesity remains, the other non-orthopaedic health risks stay as well...for multiple reasons, a TKR [total knee replacement] is not the appropriate solution for a morbidly obese patient and will not lead to weight reduction. It is important to address the root cause and not fight the symptoms. Morbid obesity should be seen as a life-event that requires a multidisciplinary approach and cannot be resolved just by an orthopaedic surgeon.
This shows this doctor's bias. Nothing else matters but weight loss and "resolving" obesity. He views obese patients as having psychological problems, so he believes they need treatment by a "whole team of specialists." He sees fat people as physically and psychologically sick, thinks they brought the problem on themselves, and doesn't believe they deserve a joint replacement unless they earn it by being "reforming" their lives. Since a knee replacement doesn't usually produce weight loss (and to him weight loss is the real goal), he sees no reason to do a joint replacement on obese people unless they agree to weight loss treatment first, and joint replacement is the blackmail he holds over patients' heads until they comply.

News flash! The main justification for doing joint replacements is not to solve an "obesity problem."

Yes, many studies about weight patterns after joint replacement show that joint replacement doesn't usually result in weight loss and is not justified as a way to help people lose weight. However, these studies miss the point.

Whether or not weight loss occurs after joint replacement is IRRELEVANT. Impaired mobility and major pain are a significant interference with quality of life. The purpose of joint replacements is to IMPROVE QUALITY OF LIFE.

Let's say that again. Weight loss should NOT be the goal of joint replacement for obese people. Instead, the main goal is to improve quality of life, reduce pain, and to regain function. 

That this question is even brought up reveals the bias in so much of health care. The focus is on weight loss and little else. If a procedure does not lead to weight loss, then its utility and appropriateness is questioned, even when it brings many improvements in function and pain. And if people of size decline weight loss treatment, then many health care providers believe we don't "deserve" access to the same level of health care as everyone else.

Shame and Blame Only for Fat People

Another ethical problem in joint replacement discussions is the issue of blame. Fat people are not seen as "deserving" a joint replacement because they are blamed for developing the joint issues in the first place. The article quoted above has a typical viewpoint:
A patient needs to take responsibility for the choices they make. By choosing for an unhealthy lifestyle, consuming junk food frequently and rarely exercising, your tendency to become overweight is greater than that of a healthy individual. The greater the load a joint has to carry, the sooner it wears out and the sooner a total knee replacement is required. 
Here is the typical assumption of most care providers, that obesity is a choice. In other words, fat people are only fat because they have bad habits and refuse to take responsibility for them.

Yet the issue of obesity is far more complicated, since many fat people do not have "bad" habits and yet still are fat. Genetics are highly relevant. In addition, many diseases (such as Polycystic Ovary Syndrome and Lipedema) and medications (such as steroids, birth control, or SSRIs) can result in weight gain and obesity. The bottom line is that what causes obesity is quite complex and that for many people, OBESITY IS NOT A BEHAVIOR.

Yet orthopedists routinely justify denying joint replacement surgery to fat people based on the idea that they have caused their own condition and don't "deserve" treatment.

Sadly, shame and blame are part of the joint replacement discussion only for fat people. Average-sized people are rarely held responsible for their own mobility challenges, even those who have caused or added to the issue by engaging in certain sports or by participating in extreme sports.

Few athletes are denied joint replacements or other surgeries even though their injuries may lead to joint issues at a relatively early age and a high rate of needing the artificial joint replaced. But fat people are felt to have caused their own disability and therefore are seen as not "deserving" treatment. Haven't devotees of extreme sports and over-exercising brought on their own joint issues? Yet they are rarely denied joint replacements.

Don't forget, fat people have accidents and injuries too. Weight can exacerbate an injury and speed the development of arthritis, yes, but is often not the original cause. As with thinner people, the original injury causes the problem; the weight may accelerate susceptibility to arthritis but does not cause it. Yet many fat people with a history of injury are denied access to joint replacements and told that they only developed arthritis because they were fat, completely ignoring the role of the intervening injury.

But does it really matter why the condition developed? Playing the blame game does not serve anyone. EVERYONE deserves to have maximum function, mobility, and relief of pain. In the end, it does not matter why the arthritis has developed, just that it has developed and that it needs to be treated.

Yet many high-BMI patients are often told that they must lose weight to a certain BMI, are referred for bariatric surgery, or must submit to hard-core weight loss counseling or medical weight loss programs (which is often condescending or which involve dubious very low calorie diets) in order to be considered for a joint replacement.

Ethically, physicians can present information about the possible benefits of weight loss and can offer assistance for those who wish to pursue weight loss. It is one form of treatment that can be considered, and some people will be interested in pursuing it.

However, informed consent means that patients need to be presented with information on the benefits AND the risks of a proposed treatment. Therefore, physicians should also have to be honest about the strong evidence that few people manage to lose to a reasonable BMI or keep the weight off for any meaningful length of time, that weight loss has its own risks, and that for many, weight loss often leads to weight cycling and greater rebound, and weight cycling also has risks.

People of size can be counseled about the potential benefits and risks of weight loss before joint replacement. But informed consent means that patients also have the right not to choose a particular therapy. To outright deny the surgery, or to blackmail people into weight loss counseling or risky bariatric surgery in order to have access to a procedure to regain a normal life is fraught with ethical problems. It is just plain WRONG.

Some doctors even deny access to pain relief medication unless fat patients show a certain amount of weight loss. The comments section of one blog post tells such a story:
Now the...doctor is telling a woman I know that she needs to lose large amounts of weight before he can sign her up for a pain management clinic. Yes, being unable to exercise for the past year due to serious knee issues has meant that she’s gained weight… but if she’s serious about getting pain-free, apparently she will miraculously become able to do heavy-duty exercise until she loses fifty pounds and is suddenly worthy to have her pain managed.
Sometimes fat patients are even denied medical treatments to lessen pain:
A colleague of mine told me today that he was denied a cortisone shot in his knee by the VA because of his weight. He was told that when he got down to 250 pounds, then he could have the shot. This seems so wrong to me. He wants to be more active, but cannot because of knee pain. This pain is treatable, and the treatment could enable him to be more active, which would improve his health. But, they will not treat his knee pain because of their pre-conceived notion of what is healthy.
This is another ethical lapse; pain relief should not be used as emotional and physical blackmail into weight loss compliance.

Inevitably, when weight loss fails, as research shows it almost certainly will, that leaves patients with no recourse for pain relief. As one care provider succinctly put it in an article about denying hip replacements to patients with a BMI over 30:
Relief of pain is a universal human right.
Denying fat people adequate pain relief simply because of their size is blatantly unethical. As another commentator in the article remarked, "The decision is perverse and appears to breach basic principles of healthcare."

What Happens When Joint Replacement Is Denied?

Another important ethics question ignored by many in the orthopedics field is what happens to obese people who are denied access to joint replacements?

One recent online article did look at this question (my emphasis):
Because of the increased risks of complications, it is common practice for some surgeons to restrict the use of TKA in patients with a BMI of 40 or higher. Based on the current available data, many surgeons and surgeon groups across the country withhold surgical intervention in morbidly obese patients until body weight is optimized and associated medical comorbidities are better controlled...The medical and societal implications of withholding TKA in morbidly obese patients are unknown. 
We posit three potential outcomes for patients who are denied TKA based on their having a BMI of 40 or higher and other associated comorbidities: 1) The patient chooses to seek a second opinion and have total joint arthroplasty performed at another institution. 2) The patient chooses to seek appropriate medical options such as medical weight management counseling, bariatric surgery, or both, and achieves successful weight reduction to meet the total joint arthroplasty healthy BMI threshold (BMI less than 40). 3) The patient chooses to seek appropriate medical options such as medical weight management counseling and/or bariatric surgery, but is unable to achieve successful weight reduction to meet the total joint arthroplasty healthy BMI threshold. 
We propose that this last group of patients is the cohort that is most concerning and may benefit most from a targeted care pathway and a multidisciplinary medical weight loss management team. This healthcare team should include an orthopedic surgeon, bariatric surgeon, registered dietitian, exercise specialist, and mental health provider who can in concert provide comprehensive support for the morbidly obese patient to safely achieve the target body weight and BMI required for a safe and effective TKA that can improve quality of life. We are in the initial stages of developing such a program at our institution.
It's great that this group of doctors are actually concerned about what happens to fat people who are denied joint replacement access. However, it's appalling that their answer is to simply pressure those people into ever more radical weight loss techniques (and apparently, bariatric surgery).

They refuse to relax their clinic's BMI restrictions on the premise that it is too risky for these patients to undergo surgery, yet it's perfectly fine for those same people to undergo bariatric surgery instead? Somehow they miss the irony in this protocol.

Furthermore, they COMPLETELY MISS what is the most likely outcome of denying fat people joint replacement ─ increasing disability and pain, accompanied by decreasing mobility and fitness.

These doctors assume that fat people denied surgery will either lose weight (despite low long-term success rates of even fairly small amounts of weight), undergo radical weight loss treatment (on the assumption that this will help improve outcomes), or go find another doctor who will do their surgery at their weight.

They are completely discounting the many, many fat people who will stop their search right there because they assume that all orthopedic surgeons will deny joint replacement to them. It also ignores the fact that many fat people live in areas where indeed, all orthopedic surgeons do deny joint replacement to fat people.

And in the meantime, the arthritis just gets worse (making it harder to operate on), and the person becomes increasingly disabled. As Dr. John Morton of Stanford University School of Medicine notes:
Not operating on obese patients to avoid risk or cost can backfire, Morton points out. "When you delay treatment of these patients, it gets worse," he says.
The result of denying joint surgery based on BMI is that many fat people will grow increasingly disabled, increasingly unfit, and increasingly immobile because they cannot access the procedures which could help them regain their mobility and decrease their pain.

Since fitness is the biggest key to wellness and longevity regardless of BMI, denying fat people joint replacement may well shorten their lives. 

This is why fat people often stop seeing doctors for years and years. The condescending and patronizing way they are treated, the unrelenting pressure for radical weight loss or bariatric surgery, the denial of access to pain relief or procedures to help improve quality of life...all this is why fat people have so little trust in doctors.

And it's typical that even well-meaning providers like the ones in this article simply do not have a clue how they actually often WORSEN fat people's health in their attempt to "help" them.

Summary

Sadly, even today, a lot of orthopedic surgeons still refuse to do knee replacements or hip replacements on anyone with a BMI over 35 or over 40 (or sometimes less). 

In many places in the U.K., for example, people with a BMI over 35 have been routinely denied joint replacements and other surgeries. Some even deny joint replacements to those with a BMI over 30.

They justify this by pointing out the short-term risks associated with orthopedic surgery in high-BMI people. They suggest that higher complication rates and somewhat lower functional outcomes justify denying surgery to this group.

However, while substantial research shows that obese patients have higher rates of short-term problems like infection, blood loss, surgical revisions, blood clots and slower recovery after joint replacement surgery, not all research shows increased risks.

Furthermore, obese patients often show greater overall improvements in function and pain relief than non-obese patients, or the differences are not clinically meaningful.

Although clearly obese patients should be counseled about the potential risks (particularly the risk for infection among diabetics with a BMI over 40), the magnitude of risk is relatively modest and not so great that it justifies precluding obese patients from this surgery.

Rather, the risks are a call to surgeons to further examine the long-overlooked issue of proper medication dosing, the use of surgical drains, and wound management in high-BMI patients. 

Although total function may be modestly less improved and more revisions may need to be done in larger patients, most obese patients have very good long-term results from the surgery, even when both knees are replaced.

Even in super-obese patients (BMI over 50), joint replacements last well, although total function may be somewhat impacted compared to average-sized people.

Similarly, despite some increase in short-term risks, obese people respond well to hip replacement surgery and do well in the long-term. One study which followed obese hip replacement patients for a mean of 14.5 years concluded:
Our findings suggest there is no evidence to support withholding total hip replacement from obese patients with arthritic hips on the grounds that their outcome will be less satisfactory than those who are not obese.
Furthermore, if overall health is the real priority, the advantages of joint replacement for obese people is obvious.

It's hard to work on fitness when exercising results in high levels of pain. Yet once the joint is replaced, mobility is greatly increased and pain levels are decreased. Whether or not joint replacement leads to weight loss post-operatively is irrelevant; better mobility and less pain is a significant gain in quality of life and may also lead to better fitness, independent of weight change.

And better fitness, regardless of BMI, improves health, life span, and often quality of life. As one study put it:
Performing TKA or THA on patients with high BMI may increase mobility leading to improved quality of life.
Bottom line, obese people should not be denied access to the potentially life-changing pain relief and functional improvement of joint replacement surgery.

Although some orthopedic surgeons still outright deny surgery or require that high-BMI people lose weight or undergo bariatric surgery before being considered candidates for a joint replacement, more surgeons are beginning to recognize that such restrictions are unethical and unfair. One study stated:
Withholding surgery based on the BMI is not justified. 
Another study's authors concluded:
Universal denial of surgery based on BMI is unwarranted.
Some surgeons do not withhold knee replacement surgery, but do require that patients be referred to weight loss specialists first before being able to access surgery, even if such referrals do not result in weight loss. One recent review states:
We believe that obese patients should be informed of the above-mentioned risks and should be advised to lose weight. Many patients will fail to achieve this goal without professional help, so we refer obese patients with osteoarthritis to a multidisciplinary obesity outpatient clinic. If this approach fails to result in weight loss, the patient at least benefits from a thorough analysis of existing comorbidity and optimization of his or her medical condition. We do not withhold a total knee arthroplasty from these patients, but we inform them extensively regarding the risk that their obesity poses with regard to this procedure.
This presents another ethical dilemma. It is of course reasonable to inform patients of their risk profile before surgery, and this includes the potential risks associated with obesity and surgery. However, is this "extensive" information about risk presented neutrally without judgment, or is it done with scare-mongering and emotional blackmail? Too many care providers err on the side of the latter instead of the former in hopes of scaring fat people into weight loss compliance. This is not ethical and is not good medicine.

Similarly, the potential benefits of weight loss can be presented as a therapeutic option ─ as long as the surgeon also gives full disclosure of the potential risks of weight loss/cycling and its poor long-term success rate. But rarely do doctors acknowledge both the pros and cons of weight loss, and many emotionally harass patients about losing weight or mandate weight loss treatment before surgery can be accessed.

Fortunately, there is some good news on this topic. In the last few years, more and more surgeons and organizations are speaking out against BMI restrictions on access to joint replacements. They recognize that the tremendous improvement in mobility, quality of life, knee function, and pain relief is worth the trade-off of a potentially increased risk for mild short-term morbidity. As one review put it:
The improvements in patient-reported outcome measures experienced by patients were similar, irrespective of body mass index. Health policy should be based on the overall improvements in function and general health gained through surgery. Obese patients should not be excluded from the benefit of total knee arthroplasty, given that their overall improvements were equivalent to those of patients with a lower body mass index.
Other care providers are not quite there yet but are at least beginning to recognize the ethical implications of such restrictions and are debating their merits, as in this article:
While obesity does raise the risks of surgical complications, those don't always outweigh the benefits of the procedure, says Dr. Michael Parks, an orthopedic surgeon at the Hospital for Special Surgery in New York City who chairs the American Academy of Orthopaedic Surgeons Workgroup on Obesity..."We have to weigh ... their improvement in quality of life versus the potential costs," he adds.
And some care providers are also now beginning to recognize that much short-term morbidity in obese people may be prevented with different medication dosing and re-evaluating standard surgical protocols.

IT'S ABOUT TIME.

Now it's time to ensure that those surgeons who are still resisting treating high-BMI people also get the memo.

*You can read more about one Health At Every Size activist's journey with knee replacements here. You can read more about doctors requiring weight loss surgery in order for high-BMI patients to access knee replacement here. 


References

Media Articles on Joint Replacement Restrictions on BMI
BMI and Morbidity from Knee Replacement Surgery (positive and negative)

J Bone Joint Surg Br. 2006 Mar;88(3):335-40. Does obesity influence the clinical outcome at five years following total knee replacement for osteoarthritis? Amin AK1, Patton JT, Cook RE, Brenkel IJ. PMID: 16498007
A total of 370 consecutive primary total knee replacements performed for osteoarthritis were followed up prospectively at 6, 18, 36 and 60 months. The Knee Society score and complications (perioperative mortality, superficial and deep wound infection, deep-vein thrombosis and revision rate) were recorded...There was no statistically-significant difference in the complication rates for the subgroups studied. Obesity did not influence the clinical outcome five years after total knee replacement.
J Bone Joint Surg Am. 2012 Oct 17;94(20):1839-44. doi: 10.2106/JBJS.K.00820. The influence of obesity on the complication rate and outcome of total knee arthroplasty: a meta-analysis and systematic literature review. Kerkhoffs GM1, Servien E, Dunn W, Dahm D, Bramer JA, Haverkamp D. PMID: 23079875
...A search of the literature was performed, and studies comparing the outcome of total knee arthroplasty in different weight groups were included...twenty studies were included in the data analysis. The presence of any infection was reported in fourteen studies including 15,276 patients (I2, 26%). Overall, infection occurred more often in obese patients, with an odds ratio of 1.90 (95% confidence interval [CI], 1.46 to 2.47). Deep infection requiring surgical debridement was reported in nine studies including 5061 patients (I2, 0%). Deep infection occurred more often in obese patients, with an odds ratio of 2.38 (95% CI, 1.28 to 4.55). Revision of the total knee arthroplasty, defined as exchange or removal of the components for any reason, was documented in eleven studies including 12,101 patients (I2, 25%). Revision for any reason occurred more often in obese patients, with an odds ratio of 1.30 (95% CI, 1.02 to 1.67). CONCLUSIONS: Obesity had a negative influence on outcome after total knee arthroplasty.
Bone Joint J. 2016 Sep;98-B(9):1160-6. doi: 10.1302/0301-620X.98B9.38024. Does bariatric surgery prior to total hip or knee arthroplasty reduce post-operative complications and improve clinical outcomes for obese patients? Systematic review and meta-analysis. Smith TO, Aboelmagd T, Hing CB, MacGregor A. PMID: 27587514 
AIMS: Our aim was to determine whether, based on the current literature, bariatric surgery prior to total hip (THA) or total knee arthroplasty (TKA) reduces the complication rates and improves the outcome following arthroplasty in obese patients. METHODS: A systematic literature search was undertaken of published and unpublished databases on the 5 November 2015. All papers reporting studies comparing obese patients who had undergone bariatric surgery prior to arthroplasty, or not, were included. Each study was assessed using the Downs and Black appraisal tool. A meta-analysis of risk ratios (RR) and 95% confidence intervals (CI) was performed to determine the incidence of complications including wound infection, deep vein thrombosis (DVT), pulmonary embolism (PE), revision surgery and mortality. RESULTS: From 156 potential studies, five were considered to be eligible for inclusion in the study. A total of 23 348 patients (657 who had undergone bariatric surgery, 22 691 who had not) were analysed. The evidence-base was moderate in quality. There was no statistically significant difference in outcomes such as superficial wound infection (relative risk (RR) 1.88; 95% confidence interval (CI) 0.95 to 0.37), deep wound infection (RR 1.04; 95% CI 0.65 to 1.66), DVT (RR 0.57; 95% CI 0.13 to 2.44), PE (RR 0.51; 95% CI 0.03 to 8.26), revision surgery (RR 1.24; 95% CI 0.75 to 2.05) or mortality (RR 1.25; 95% CI 0.16 to 9.89) between the two groups. CONCLUSION: For most peri-operative outcomes, bariatric surgery prior to THA or TKA does not significantly reduce the complication rates or improve the clinical outcome. This study questions the previous belief that bariatric surgery prior to arthroplasty may improve the clinical outcomes for patients who are obese or morbidly obese. This finding is based on moderate quality evidence. 
Osteoarthritis Cartilage. 2014 Jul;22(7):918-27. doi: 10.1016/j.joca.2014.04.013. Epub 2014 May 13. The effect of body mass index on the risk of post-operative complications during the 6 months following total hip replacement or total knee replacement surgery. Wallace G, Judge A, Prieto-Alhambra D, de Vries F, Arden NK, Cooper C. PMID: 24836211
OBJECTIVE: To assess the effect of obesity on 6-month post-operative complications following total knee (TKR) or hip (THR) replacement. DESIGN: Data for patients undergoing first THR or TKR between 1995 and 2011 was taken from the Clinical Practice Research Datalink...RESULTS: 31,817 THR patients and 32,485 TKR patients were identified for inclusion. Increasing BMI was associated with a significantly higher risk of wound infections, from 1.6% to 3.5% in THR patients (adjusted P < 0.01), and from 3% to 4.1% (adjusted P < 0.05) in TKR patients. DVT/PE risk also increased with obesity from 2.2% to 3.3% (adjusted P < 0.01) in THR patients and from 2.0% to 3.3% (adjusted P < 0.01) in TKR patients. Obesity was not associated with increased risk of other complications. CONCLUSION: Whilst an increased risk of wound infection and DVT/PE was observed amongst obese patients, absolute risks remain low and no such association was observed for MI, stroke and mortality. However this is a selected cohort (eligible for surgery according to judgement of NHS GPs and surgeons) and as such these results do not advocate surgery be given without consideration of BMI, but indicate that universal denial of surgery based on BMI is unwarranted.
J Surg Res. 2012 May 1;174(1):7-11. doi: 10.1016/j.jss.2011.05.057. Epub 2011 Jun 25. Does BMI affect perioperative complications following total knee and hip arthroplasty? Suleiman LI1, Ortega G, Ong'uti SK, Gonzalez DO, Tran DD, Onyike A, Turner PL, Fullum TM. PMID: 21816426
BACKGROUND: Orthopedic surgeons are reluctant to perform total knee (TKA) or hip (THA) arthroplasty on patients with high body mass index (BMI). Recent studies are conflicting regarding the risk of obesity on perioperative complications. Our study investigates the effect of BMI on perioperative complications in patients undergoing TKA and THA using a national risk-adjusted database. METHODS: A retrospective analysis was performed using the 2005-2007 American College of Surgeons-National Surgical Quality Improvement Program ACS-NSQIP dataset. Inclusion criteria were patients between 18 and 90 y of age who underwent TKA or THA. Patients were stratified into five BMI categories: normal, overweight, obese class I, obese class II, and morbidly obese. Demographic characteristics, length of stay, co-morbidities, and complication rates were compared across the BMI categories. RESULTS: A total of 1731 patients met the inclusion criteria, with 66% and 34% undergoing TKA and THA, respectively. A majority were female (60%) and >60 y (70%) in age. Of the patients who underwent TKA, 90% were either overweight or obese, compared with 77% in those undergoing THA. The overall preoperative comorbidity rate was 73%. The complication and mortality rates were 7% and 0.4%, respectively. When stratifying perioperative complications by BMI categories, no differences existed in the rates of infection (P = 0.368), respiratory (P = 0.073), cardiac (P = 0.381), renal (P = 0.558), and systemic (P = 0.216) complications. CONCLUSIONS: Our study demonstrates no statistical difference in perioperative complication rates in patients undergoing TKA or THA across BMI categories. Performing TKA or THA on patients with high BMI may increase mobility leading to improved quality of life.
J Bone Joint Surg Am. 2012 Aug 15;94(16):1501-8. The association between body mass index and the outcomes of total knee arthroplasty. Baker P1, Petheram T, Jameson S, Reed M, Gregg P, Deehan D. PMID: 22992819
BACKGROUND: In the United Kingdom, organizations involved in health-care commissioning have recently introduced legislation limiting access to total knee arthroplasty through the introduction of arbitrary thresholds unsupported by the literature and based on body mass index. This study aimed to establish the relationship between body mass index and patient-reported specific and general outcomes on total knee arthroplasty. METHODS: Using national patient-reported outcome measures (PROMs) linked to the National Joint Registry, we identified 13,673 primary total knee arthroplasties performed for the treatment of osteoarthritis...The improvement...was compared for three distinct groups based on body mass index (Group I [15 to 24.9 kg/m(2)], Group II [25 to 39.9 kg/m(2)], and Group III [40 to 60 kg/m(2)]) with use of multiple regression analysis to adjust for differences in age, sex, American Society of Anesthesiologists grade, general health rating, and number of comorbidities. RESULTS: The preoperative and postoperative patient-reported outcome measures declined to a similar extent with increasing body mass index. The gradient of the linear regression equation relating to the change in scores was positive in all cases, indicating that there was a tendency for scores to improve to a greater extent as body mass index increased...Wound complications were significantly higher (p < 0.001) at a rate of 17% (168 of 1018 patients) in Group III compared with 9% (121 of 1292 patients) in Group I. CONCLUSIONS: The improvements in patient-reported outcome measures experienced by patients were similar, irrespective of body mass index. Health policy should be based on the overall improvements in function and general health gained through surgery. Obese patients should not be excluded from the benefit of total knee arthroplasty, given that their overall improvements were equivalent to those of patients with a lower body mass index.
Obes Surg. 2016 May 17. [Epub ahead of print] Does Obesity Influence on the Functional Outcomes of a Total Knee Arthroplasty? Torres-Claramunt R1,2, Hinarejos P3,4, Leal-Blanquet J3, Sánchez-Soler JF3, Marí-Molina R3, Puig-Verdié L3,4, Monllau JC3,4. PMID: 27189353
BACKGROUND: The objective of this study was to compare the total knee arthroplasty (TKA) functional outcomes and quality of life of obese and non-obese patients. METHODS: Prospective comparative study, including all patients underwent TKA in a single centre. Patients were divided into three groups: Group 1 (Gr.1) BMI <30 kg/m2, Group 2 (Gr.2) BMI ≥ 30 kg/m2 and <35 kg/m2 and Group 3 (Gr.3) BMI ≥35 kg/m2. The Knee Society score (KSS) and SF-36 scores were obtained preoperatively and at 5 years of follow-up. RESULTS: A total of 689 patients were included (72.2 ± 7 years, 76.3 % women)...CONCLUSIONS: Although non-obese patients obtained better functional and reported quality of life scores than obese patients, there were no differences in the gain of quality of life and knee functionality between both groups at 5-years of follow-up. This is one of the largest series in a single centre published in literature and confirms the results obtained by other authors. Taking into account the different outcomes obtained, surgery should not be denied to patients that are obese, given that they obtained similar benefit than non-obese patients.

Sunday, February 21, 2016

Eighth Annual Turkey Awards: Weight Bias in Lipedema Care

Image by Robert Burton, U.S. Fish and Wildlife Service
It's long past time for our annual Turkey Awards, so let's get this turkey launched! This year is our Eighth Annual Turkey Awards

The Turkey Awards are the "prizes" I hand out to highlight fat-phobic treatment of people of size from care providers, biased attitudes or studies from researchers, or troubling trends in the care of fat pregnant women these days.

In past years, we've talked about:
This year it's time to focus on weight bias in the treatment of lipedema (also spelled lipoedema).

The Lipedema Series

Lipedema is an adipose tissue disorder sometimes known as "painful fat syndrome" or "big leg syndrome." In lipedema, an abnormal accumulation of fat occurs in the legs and lower body (and often arms as well). It tends to worsen around times of hormonal change, as one press release notes:
ATDs [Adipose Tissue Disorders] involve growth and retention of fatty tissue, which often starts at key life shifts in the body’s metabolism, such as puberty, pregnancy or menopause. 
The fat cells in lipedema behave abnormally, growing beyond normal size, pressing onto nearby structures like the lymph system. This causes blood and lymph fluids to leak into the system, affecting joints and lymph circulation. Over time these abnormal fat cells can go from simply causing a pear-shaped body to interfering with mobility and causing secondary lymphedema (also called lipo-lymphedema). This can strongly impact the person's health and quality of life.

Many people of size, especially "morbidly obese" and "super obese" people, have lipedema and don't know it. It explains why some fat people have great difficulty losing weight, even when being very strict with diet and exercise. It also explains why lymphedema issues are more common in very high BMI women.

I ran a major series of posts on lipedema last year. Here is what we have covered so far:
Today, we talk about why this common condition (perhaps affecting up to 11% of women) is so under-diagnosed, and how the care of lipedema is impacted by weight bias in the medical community.

Lack of Medical Awareness

One of the most difficult challenges of lipedema is just getting diagnosed, let alone receiving adequate treatment. As one resource notes:
This frustrating genetic disorder of fatty deposition is not particularly rare, but is rarely diagnosed because clinicians fail to recognize it.
The biggest barrier to diagnosis is that most care providers do not know about lipedema. 

Care providers can't diagnose or treat something they don't know exists. But if this diagnosis has been around for 75 years, why are so many doctors still ignorant about this condition?

It's probably due to a combination of weight bias and practical barriers. Let's talk about these factors. 

Institutional and Personal Weight Bias

It has been estimated by lipedema experts that about 97% of care providers in the U.S. do not know anything about lipedema. How can that be?

One of the most critical questions is why medical schools aren't teaching about this disorder when it's been known about for 75 years.

Sure, lipedema is just one of many conditions that have been discovered in recent years, and medical schools only have so much time to cover many important conditions. That is a real issue. However, the main reason that this condition hasn't made it into most medical school curricula is underlying institutional weight bias.

Generations of doctors have been trained that obesity is always due to overeating and under-exercising, minus a few extremely rare genetic conditions. The medical world is very invested in this world view, both financially and emotionally, and is extremely resistant to even the mere suggestion of any other possibility. As one leading lipedema doctor notes:
People with fat disorders have excess fat, or fatty tissue, on their bodies that cannot be lost by lifestyle changes...It’s pretty difficult for the medical community to accept that fact.
Emotionally, many doctors simply don't want to hear about alternate explanations for obesity. Like the rest of society, they want simple, black-and-white views with easy answers that put the responsibility on the person's behavior. It's far easier to blame the victims than to question everything they've been taught to believe.

And of course, financially many doctors are deeply invested in the obesity treatment industry through connections to companies that specialize in weight-loss plans, pharmaceuticals, and surgeries. This thoroughly compromises their objectivity, consciously or unconsciously.

Some doctors have so much personal weight bias that they continue to deny that this condition exists, even when presented with research about it from prestigious medical journals. They think patients are making up a condition to hide a lack of self-discipline. They believe all our health issues are just from being fat, and that we are simply in denial or making excuses for overindulgence and laziness.

Weight bias is deeply embedded into medical culture. This is a major reason why lipedema has been so neglected as a field of study and as a diagnosis, despite its discovery many years ago. 

Weight bias in the medical field, both institutional and personal, remains one of the most significant barriers to improving the care of people with lipedema.

Practical Barriers

There are also practical barriers to more awareness of lipedema.

One major problem is that lipedema has no ICD (International Classification of Disease) diagnostic code.

If this condition has been known about for seventy-five years, why hasn't a diagnostic code been assigned in all that time?  Not having an ICD code makes it easy for biased caregivers to claim that lipedema is not a "real" condition.

The good news is that lipedema finally has been assigned a MeSH (Medical Subject Heading) search term on PubMed, and you can now search for and find studies on lipedema/lipoedema in the medical literature. In addition, the National Health Service in the U.K. and other medical groups accept it as a real condition. This indicates medical acceptance of lipedema is increasing. 

An ICD code for lipedema is under review, but it still has not been approved yet; weight bias has undoubtedly impeded this process. This is a critical issue, because without an ICD code, it is difficult for caregivers to officially diagnose the condition or to receive compensation for treating it. Insurance routinely denies treatments for people with lipedema, who must then either pay out of pocket or forgo treatment. Getting the ICD code approved is the first and most critical step towards better recognition and treatment of lipedema. 

Another practical barrier is that lipedema doesn't really fall under any particular medical subspecialty. As one recent Canadian article points out, that means that no particular group is promoting awareness of this condition, and very few are researching it or working on adequate treatment:
"No subspecialty has taken it on as something they're going to spearhead," said Dr. Adam Power, a vascular surgeon at London Health Sciences Centre, who sees patients with the condition. "There are few physicians who know about it."
Of the leading lipedema doctors in the world, some are endocrinologists, some are plastic surgeons, some are vascular surgeons, and a few are internists or dermatologists. This makes it difficult for even the lipedema specialists to collaborate, and the lack of centralized information makes it very hard for the average doctor to know how to treat lipedema or make referrals for it.

Although there is no officially-recognized subspecialty on lymphology, doctors who treat lymphedema are among the few that recognize lipedema regularly. However, only people who have developed secondary lipo-lymphedema go see these doctors. This means lipedema is usually only diagnosed in its later stages, once significant damage has been done. This results in fewer treatment options and worse outcomes for patients.

If we are ever going to improve care for people with lipedema, the medical community needs a specialty that will spearhead treatment and research on lipedema and its resulting lymph complications so that lipedema can be caught and treated earlier.

Additionally, we need a centralized, weight-neutral source of information that does not further weight-based stereotypes (see below). Some lipedema resources are in the process of being developed now, but further development is clearly needed. 

Impact On Health Care

Lipedema has a tremendous impact on a woman's health, both due to the condition itself and because of its impact on the quality of healthcare given.

As noted, many women with lipedema go undiagnosed for years. Often, lipedema is not diagnosed until it has progressed to severe levels and major complications have developed.

Yet even among care providers who know about lipedema, patients often receive inadequate or incorrect treatment, leading to complications that may have been avoidable. Even these complications themselves are often mistreated, leading to chronic health issues, disability, and sometimes even life-threatening sequelae. 

All of these situations combine to have a tremendous negative impact on the health of people with lipedema. 

Delayed Diagnosis and Underdiagnosis

As noted, many women with lipedema go for many years before their lipedema is diagnosed, and this delay in diagnosis results in more complications accruing. One German paper notes:
Because of the widespread lack of awareness of the medical condition ‘lipedema’ in the medical profession, this disease is usually first diagnosed when it has reached a very advanced stage, and sequelae have already developed: In half of cases, it is not until ten years after lipedema first develops that the diagnosis is made, and in almost a quarter of cases it is even 30 years or more! Many of the women affected have to endure a living hell until a diagnosis is finally made and they receive help.
Far too often, the diagnosis does not originate with providers because they do not know about this condition. Many women realize they have lipedema via the internet and then bring that information to their care providers, whom they must often educate about lipedema. Despite acceptance of lipedema from many medical societies, they may still be told they are just making excuses for being fat.

Although medical awareness of lipedema and lipolymphedema has increased recently, there is also pushback about this diagnosis from some in the medical community. Another German research article called the diagnosis of lipedema "trendy" and implied that it is being overdiagnosed:
Due to its increased presence in the press and on television, the diagnosis of lipedema is on the way to becoming a trendy diagnosis for those with thick legs. Despite this, one must recognize that lipedema is a very rare disease.
A rare disease? If about 11% of women have lipedema, that is hardly a "very rare" disease.

But some researchers question this estimate of the incidence of lipedema. Because lipedema in its early stages is hard to distinguish from just a pear-shaped body, it's hard to prove whether that 11% figure is accurate or not; some cases really may just be a tendency towards gynecoid deposition of fat.

But clearly, for many people lipedema is far more than just a pear-shaped body. They also have the nodules of abnormal fat tissue under their skin, hypermobility and joint issues, muscle weakness, legs that are painful to the touch, frequent bruising, great difficulty losing weight, and problems with the lymph system. 

Whatever the true incidence is, it seems clear from looking around society that lipedema is not a "very rare" disease, and there are likely far more women going undiagnosed than a rampant overdiagnosis of the condition. Medical resistance is more a result of institutional and personal weight bias than a legitimate concern about a trendy diagnosis. 

Undertreatment of Lipedema

Even when lipedema has been diagnosed, treatment is often inadequate or inappropriate.

Many doctors receive minimal education about the lymph system. Since there is no specialty with centralized expertise in lymph issues or with lipedema, there are very few specialists or experts to consult with about possible treatments. This means that doctors sometimes conclude there is little to be done for lipedema and so prescribe virtually no action. Patients may be told that they have a progressive condition that will inevitably get worse and that there is nothing to be done to treat it, or that treatments are only needed if a severe stage develops. 

While it's true that lipedema cannot be cured at this time, there ARE legitimate treatments for lipedema, and lipedema is not always progressive and life-threatening. No one understands why some people with lipedema progress to severe stages and others do not, but adequate treatment may lessen the chances of it becoming severe or causing secondary complications. 

Unfortunately, even known effective treatments are often not used. Manual Lymph Drainage treatments, compression garments, bandaging, and pneumatic pumps are effective at reducing the severity and progression of lipedema, but frequently are under-utilized because of hassles with insurance companies. 

Compression garments may not be not covered by health insurance. This can be particularly difficult for high-BMI people because these garments often have to be custom-made, which is very expensive. Only people with substantial disposable income are able to afford them out-of-pocket, which means that the poorest people are the ones whose lipedema progresses most severely and have the most complications.

Insurance companies also rarely cover lymph-sparing tumescent liposuction, the one treatment that seems to be the most effective for lipedema. They see liposuction as always cosmetic, even though there is mounting evidence that lymph-sparing liposuction (not normal liposuction) is an effective medical treatment for lipedema, resulting in a remission from the worst of the lipedema. Yet lipedema patients must typically pay many thousands of dollars out of pocket to access it, which puts it out of reach for most. 

Although it requires tenacity, lipedema patients can sometimes win against the insurance companies and get coverage of needed treatments. You can read one woman's story of fighting the insurance company for lipedema treatments here.

However, lack of knowledge about the lymph system, about lipedema treatment, the lack of lipedema specialists, and insurance coverage hassles mean that most lipedema patients are chronically undertreated. 

Mistreatment of Lipedema

While undertreatment is the most common problem with lipedema management, mistreatment can also be a significant problem. Because care providers receive little education about lipedema, some patients are prescribed ineffective or even harmful treatments. 

As we have seen in previous posts, care providers have sometimes prescribed diuretics or traditional cosmetic liposuction out of ignorance, both of which have been shown to worsen lipedema rather than help it.

Similarly, many care providers do not realize that lipedema patients typically need lighter compression garments or may not be able to tolerate compression garments at all because of differences in pain levels between regular lymphedema and lipedema. Similarly, the shape of traditional compression garments for lymphedema patients are often inappropriate for lipedema patients:
Standard size graduated compression stockings are based on the assumption of the legs being tapered from smaller at the ankles to largest at the upper thigh area. For lipoedema or lipo lymphedema sufferers however, the legs can be shaped very differently with bulges, fat pads and indentations in varying locations along the leg. 
In such cases it is very important that strong consideration is given to the shape of the patient’s legs before determining what type of compression garment would work best for them. To be most effective, compression garments can be custom made to accommodate the individual’s irregular leg shape.
Additionally, if lipedema patients develop complications like joint problems, mobility issues, or skin infections, these are often grossly mistreated due to ignorance, bias, or lack of adequate knowledge of optimal treatments for high-BMI people.

For example, underdosing medications is a major problem for people with lipedema. Research shows that many "morbidly obese" patients with cellulitis or erysipelas skin infections are underdosed with antibiotics in the Emergency Room, even in hospitals that specialize in high-BMI patients. Many of these patients likely have untreated lipo-lymphedema (which often results in skin infections), but are given inadequate doses of medications for treating the infection. This sets them up for chronic, worsening infections because the bacteria can mutate to a less-treatable form. 

Sometimes medical maltreatment of lipedema becomes life-threatening. One website tells the story of a woman with lipedema who developed cellulitis. She went to the Emergency Room several times with reddened legs (the "red socks" look), fever, and pain. She was sent home with inadequate care three times. The fourth time, she was admitted but it was too late; the infection had spread and she had become septic. She died the next day.

Lipedema itself is not fatal, but in its severe forms it can lead to mobility issues and secondary infections which can be life-threatening. The story above demonstrates why it is so important for lipedema patients to be proactive about care and INSIST on having their needs met. It also demonstrates why it is so important for care providers to be better educated about proper treatment of people with lipedema.

Unfortunately, usually the only thing most of them focus on is weight loss.

Weight Bias in Lipedema Care

Even when care providers DO recognize lipedema as a legitimate condition and offer treatments known to be effective, weight bias still impacts care.

Even doctors who specialize in lipedema treatment still hold many biased assumptions about lipedema patients' behavior and habits. They often prescribe unproven interventions based on these biased assumptions. Some even refuse care unless patients agree to weight loss or "rigorous weight control."

These care providers mean well. They sincerely want the best for their patients, but have been so indoctrinated with stereotyped assumptions and attitudes that it is difficult for them to see their own biases and how these impact care.

Lipedema specialists must painstakingly and honestly search their own attitudes and treatment recommendations for unconscious weight bias if care for lipedema patients is to improve.

Assumptions About Habits

Before diagnosis, lipedema sufferers are usually assumed to have "eaten themselves" into complications. They are constantly told to eat less and exercise more. When food diaries are presented showing normal intake, care providers accuse patients of lying, of lying to oneself, or of drastically under-estimating their intake. Women with lipedema often spend years and years on ever-stricter diets, achieving only small amounts of weight loss or even gaining weight while dieting and exercising, all while being blamed for being "non-compliant." 

Sadly, getting a lipedema diagnosis may not help that much.

Even care providers who know about and treat lipedema often have erroneous assumptions about patients' eating habits. One of the main treatises about lipedema says (my emphasis):
Many women describe their frustration as their condition deteriorates, often leading them to overeat and consequently gain weight. Thus it is not surprising that around half the patients end up suffering from obesity in addition to the lipedema.
Another major paper from Germany states:
Weight gain in lipedema is usually not predestined, but fundamentally determined by the general nutritional and exercise behavior. 
Here we see again the assumption that weight gain must ALWAYS be because of overeating ─ even when the patient has a condition that results in the abnormal deposition of fat. 

Many women with lipedema tell stories of a sudden gain in weight despite rigorous diet and exercise routines and no change of habits. Sudden, unexplainable weight gain is an extremely common symptom listed in the histories of countless women with lipedema, yet they are still being blamed for these gains by their lipedema care providers ─ the very people who should understand most.

The German paper cited previously that decries the diagnosis of lipedema as "trendy" goes on to contend that most fat "lipedema" patients are actually only fat, with lipo-hypertrophy (fat overgrowth) instead of real lipedema. It contends that treatment with Manual Lymph Drainage  (MLD) or other lipedema modalities is counter-productive, keeping them from the REAL business of losing weight (read bariatric surgery). The authors state:
Therapy options here are...long-term weight loss and exercise. In high-grade obesity this should be accompanied by medical and psychological support, ideally through an obesity center. Simple diets are not suitable. A long-term change of lifestyle and nutritional behavior is required. In case of morbid obesity surgical interventions such as gastric banding or gastric balloon insertion are often necessary...The physician’s prescription of MLD in this situation carries the risk of lack of action and compliance of the patient with respect to the urgently needed general measures such as weight loss and exercise.
While it's true that not all obese people have lipedema, this is another example of care providers minimizing possible medical explanations of extra weight because they are concerned it will interfere with fat people taking responsibility for their "unhealthy lifestyles" and avoiding drastic measures like bariatric surgery.

Unfortunately, many lipedema sites also promote these outdated stereotypes of fat people. One prominent source of information about lipedema on the internet states (my emphasis):
Medical management involves treating the hormonal disturbance as effectively as possible and providing nutritional guidance to avoid additional weight gain. Many of these individuals have endured years of ridicule because of their physical appearance and become recluses in their homes, further limiting their activity level. As lipedema progresses and the hypersensitivity increases, they feel less inclined to walk or exercise because of the pain. They inevitably gain more weight due to the inactivity and depression, often finding food their only comfort.
Really? Did a major medical site just promote the sweeping generalization that most people with lipedema "find food their only comfort"? Here we go again, assuming that severe presentations of the disease are simply caused by binge eating and emotional problems rather than the disease itself. 

Yes, there are some severe lipo-lymphedema cases who are house-bound emotional recluses with binge eating disorders, like those on certain highly-prejudicial TV shows. Years of dieting can develop into major eating disorders. But it's not true that this scenario applies to all ─ or even most ─ people with lipedema.  

MANY lipedema patients do not have eating disorders, many are extremely strict with their nutritional intakes, and most stay active and maintain a social life despite the challenges of lipedema.

Promoting the stereotype of the huge house-bound emotional recluse only adds to the bias that lipedema patients encounter. To see it promoted in medical resources is deeply disturbing.

Medical care providers have enough weight bias; it's time for online lipedema resources and medical texts to stop propagating such outdated and inaccurate stereotypes.

It is absolutely unconscionable that such stereotypes continue to be promoted within lipedema resources and medical texts. They need to be removed as soon as possible. 

Weight Loss and Diets as Panacea

Most caregivers who are unfamiliar with lipedema emphasize weight loss for treatment. They only see the patient's fatness, so they view the cure as dieting because they've been taught that obesity is due to poor habits. That's unfortunate but to be expected of caregivers who don't understand lipedema.

What's far more frustrating, however, are the caregivers who specialize in lipedema and lymphedema and who still make weight loss and dietary restrictions a main focus, despite no evidence showing that such interventions are helpful. 

In some practices, such interventions are even a requirement for further care or for treatment, like in some lymphedema practices.

Many lipedema specialists say they only promote dieting so that "non-lipedemic" fat is lost. They admit that dieting is unlikely to bring much loss in the lipedemic areas, but still contend that fatness outside of the hips/legs/arms must only be due to poor lifestyle and can be easily lost.

This assumption needs to be strongly questioned.

Of course lipedema patients need to be careful of lifestyle, but doctors are wrong to assume that fat elsewhere can only be due to poor lifestyle. As lipedema progresses in severity, many patients notice fat gain in supposedly non-lipedemic areas (abdomen, waist, breasts, neck, back), even in the presence of reasonable lifestyle choices. I believe that it will eventually be shown that this too is a by-product of lipedema and associated metabolism issues. In the meantime, these doctors need to listen to lipedema patients when they say that fat in these areas does not always result from poor lifestyle choices.

Lipedema specialists routinely place patients on strict "anti-inflammatory" diets, complete with forbidden foods and "good food/bad food" messages, despite no research showing that an anti-inflammatory diet is helpful. In addition, the fat-shaming language that some lipedema resources use when giving nutritional advice is problematic. Years of dieting mean that many people with lipedema have had brushes with eating-disordered behaviors; fat-shaming language and the push for weight loss in some lipedema resources can make this worse. 

Does this mean that an anti-inflammatory dietary approach can never be suggested? No, it's possible this approach might be helpful for symptom relief but accurate information is key. Patients can be told that some women have anecdotally reported improvement on anti-inflammatory diets, but the approach should not be presented as evidence-based medicine nor the only approach to treatment. Women should be informed that such dietary approaches are experimental and it is unknown whether they are effective.

The same goes for weight loss programs or bariatric surgery. These have not been studied in the context of lipedema and we don't really know what benefits or risks they entail. Since dieting is one of the most potent predictors of weight and fat gain, it could be that continuing to promote weight loss and restrictive intake among lipedema patients is actually only making things worse instead of better. There is no evidence that weight loss results in long-term improvement among lipedema patients; doctors just assume it will. In fact, some people report worse outcomes afterwards. 

Lipedema doctors need to ditch the shame and blame model. Some tell themselves they are fat-friendly and sympathetic but too many are still stuck in the mentality that fat in the "wrong" spot can only be due to lifestyle excesses and spend far too much time pressuring people for weight loss and restrictive nutrition. Patients who decline these interventions are deemed non-compliant and shamed. Some providers even try to force compliance by withholding treatments or access to care.

Lipedema doctors would do far better to promote a Health At Every Size® approach instead. They can emphasize the importance of a healthy lifestyle but without focusing on the scale, dieting practices, or restrictive nutrition as measures of "success" or compliance with treatment.  

Refusal of Care Without Weight Loss

One of the great ethical quandaries of modern medicine is whether there should be weight limitations for healthcare services.

Too often, access to healthcare is tied to weight loss. Fat people are regularly refused knee replacement surgery, organ transplants, and sometimes even pain medications unless they lose weight, have bariatric surgery, or agree to see a weight loss specialist.

Sadly, this refusal of care often extends to lipedema patients. 

Many lymphedema treatment programs see weight loss as an integral part of treatment. Some lymphedema therapists have been known to refuse treatment to "morbidly obese" patients (many of whom have lipedema) who will not agree to weight-management programs of some sort. One program requires patients to commit to:
...maintaining a constant weight or preferably losing weight during the course of treatment...Patients 'contract' for continued care by exhibiting positive behaviors regarding weight loss, attendance at bariatric support groups, Weight Watchers®, or other beneficial practices. 
The authors make it clear that patients are strongly encouraged towards bariatric surgery and conclude:
Based on clinician observation and experience, management of the morbidly obese patient with lymphedema requires that the obesity be addressed in a frank and supportive way. Many morbidly obese patients exhibit a strong element of denial regarding the disease of obesity. Obtaining treatment for obesity is a life-or-death decision but patients often focus more on the treatment of an obesity symptom – ie, edema – than the underlying problem that will shorten their life. Treatment of lymphedema must be linked to the treatment of obesity if long-term success is to be achieved. 
This is the typical response from care providers who have a strong weight bias: 
  • They view the underlying problem as psychological, even when there is evidence of physical disease causing the increased fat
  • They promote weight loss as the main solution, even when weight loss does not usually help lipedemic fat
  • They use access to healthcare as blackmail to force people into weight loss diets or bariatric surgery
Although people with lipedema should always be encouraged to pursue healthy habits to minimize the possibility of further weight gain, weight loss should NEVER be a requirement for healthcare access, nor should patients be subjected to constant harassment if they have declined weight loss interventions.

Care providers need to recognize that unexplained weight gain is a part of the lipedema syndrome, that weight gain may have nothing to do with dietary habits, that some weight gain may be unavoidable, and that for some, weight loss efforts may actually result in worse outcomes in the long run. High-BMI people have the RIGHT to opt out of weight loss programs if they don't want them or feel they would be harmful. 

Treatment for lipedema and lipo-lymphedema should NEVER be contingent on having to agree to weight-loss treatment, bariatric surgery, or special dietary regimes.

This is respect for basic patient autonomy, yet it's quite telling that violations of this basic right still occurs regularly in the lipedema and lymphedema field. 

Conclusion

The most difficult challenges of lipedema involve getting diagnosed in the first place, then getting adequate health care and respectful treatment.

Lipedema is a very real clinical entity, but sadly is nearly unknown among medical professionals in many parts of the world. European doctors have more knowledge and experience with lipedema than doctors elsewhere, but even in Europe women report difficulty in getting diagnosed.


This means that millions of people around the world are suffering with lipedema but can't even get a diagnosis, let alone adequate treatment for it.

Weight bias, both on an institutional and individual level, has played a strong role in this. Lipedema has been recognized as a condition for 75 years, yet we still don't have an ICD diagnosis code for it and insurance still largely does not cover its treatment. Until that happens, people with lipedema will continue to be blamed for their weight and for complications that are associated with lipedema.

Unfortunately, even when caregivers do recognize lipedema, weight bias continues to interfere with its treatment. Some care providers mistakenly believe that there is no effective treatment and so the patient's lipedema worsens without intervention. Others order helpful treatments such as compression garments or lymph-sparing liposuction which insurance companies short-sightedly refuse to pay for.

Weight bias continues to affect even those who specialize in treating lipedema. Many continue to make negative assumptions about the eating habits and emotional health of people with lipedema, and too many lipedema resources are filled with negative stereotypes. It is time for lipedema specialists to look honestly at their own biases and assumptions, and it is long past time for offensive and harmful stereotypes to be removed from lipedema informational sites.

Some providers require weight loss in order to access basic treatment, despite the fact that lipedema makes weight loss extremely difficult and rebound gains are common. Lipedema patients should never be pressured into weight loss, bariatric surgery, or particular dietary approaches. These can be offered as an option, but should be not be a requirement for care. Patients always retain the right to autonomy over their medical decisions, including weight loss, surgery, or a particular nutritional approach; if they decline these interventions, they should not be penalized. 

Nor should weight-loss interventions or special dietary approaches be presented as evidence-based treatment. No studies showing the benefit of these for lipedema patients exist at this time. Care providers need to stop promoting anti-inflammation or paleo diets as the "best" way to avoid lipedema progression; limited anecdotal evidence suggests they might help, but we don't have actual proof of that and patients deserve full disclosure that hard evidence is lacking. 

Furthermore, true informed consent means that patients need to be presented with information on both the benefits AND the risks of a proposed treatment (i.e., weight loss). Care providers must be honest about the strong evidence that few people manage to lose to a "normal" BMI or keep the weight off for any meaningful length of time, that weight loss has its own risks, that weight loss often leads to weight cycling and greater rebound weights, and that weight cycling also has risks.  

In conclusion, to improve conditions for people with lipedema the medical profession urgently needs to take the following steps:
  • Expedite and approve an ICD diagnostic code for lipedema
  • Require that medical schools teach about lipedema
  • Identify a medical specialty to spearhead and drive lipedema research
  • Increase funding for lipedema research, especially into potential causes of lipedema
  • Aggressively raise awareness of lipedema among general care providers 
  • Raise awareness of and increase utilization of lipedema treatment options
  • Require that insurance companies cover proven treatments for lipedema, including manual lymph drainage, compression garments, and lymph-sparing liposuction 
  • Initiate an intensive educational campaign about best-practice treatment of secondary infections like erysipelas and cellulitis in people with lipedema and lymphedema 
  • Aggressively investigate and promote awareness of proper dosing of antibiotics and other pharmaceuticals in people of size
  • Intensively promote gold-standard research into potential treatments for lipedema from both "conservative" and "alternative" models
  • Conduct long-term (not short-term) research on weight loss and anti-inflammatory or paleo nutritional approaches for lipedema
  • Continue research on whether lymph-sparing liposuction prevents or delays lipedema progression and severity
  • Eliminate weight-biased assumptions, fat-shaming language, and offensive fat stereotyping in lipedema resources
  • Question assumptions that fat in non-lipedemic areas must be due only to "lifestyle" issues
  • Eliminate biased guidelines that require weight loss or weight loss treatment in order to access medical treatments like lymphedema therapy or lymph-sparing liposuction
Lipedema patients have been underdiagnosed, undertreated, manipulated, mistreated, shamed, and blamed for too many years. It is long past time for some radical change in how lipedema patients are perceived and treated by the medical field.

Weight bias in lipedema treatment is insidious and extremely pervasive. This weight bias is a major barrier to improving care and outcomes for lipedema patients. 

I believe that most medical professionals are good-hearted people and genuinely want to help lipedema patients, but until they unflinchingly examine the effect of both personal and institutional weight bias on medical care for people with lipedema, progress will only be modest. 


References and Resources

Resources

*Trigger Warning: Many of these sites are not fat-friendly or promote dieting behaviors
Research Articles

J Dtsch Dermatol Ges. 2013 Mar;11(3):225-33. doi: 10.1111/ddg.12024. Epub 2012 Dec 11. Thick legs - not always lipedema. Reich-Schupke S1, Altmeyer P, Stücker M. PMID: 23231593
Due to its increased presence in the press and on television, the diagnosis of lipedema is on the way to becoming a trendy diagnosis for those with thick legs. Despite this, one must recognize that lipedema is a very rare disease....