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Showing posts with label informed patient. Show all posts
Showing posts with label informed patient. Show all posts

What Patients Want From Their Clinicians...

I think a lot about patients' rights, and expectations; about what the most ideal medical care should look like for a person with diabetes. I've often thought of putting together a post regarding these thoughts, but I never quite had a catalyst to really help me organize together all the elements.

The time I spent at Medicine X really got me thinking more in that direction, and contextualizing my vision. Some of these might seem like basic tenets, but others are quite 'revolutionary.'

When I advocate, I feel I usually do so, subconsciously, from some of these starting points... and I suppose they could apply to just about any other health condition. These are what patients want from their clinicians:

To Be Afforded Humanity... With:


  • Respect and Freedom: As a partner in a journey of self discovery. An equal who is allowed the freedom to disagree, respectfully, and to make a different (informed) choice from what the provider would have chosen. Not as a 'civilian' kept under the inflexible 'regime' of the provider, nor as a subordinate, ignorant layperson, or petulant child.
  • Dignity and empathy: As potential mothers, fathers, daughters, sons, sisters, brothers, significant others; people with potential hopes and dreams, fears and anxieties, just like them. Not as cold hardware to be tested, and prodded.
  • Encouragement: As persons in need of perspective, and hope, from those who have the positive power to guide us into better health. Not recrimination, or scolding, whenever we 'fail' at meeting a goal. 
  • Acknowledgement: As partners deserving of their full attention, concern, praise or recognition. Not ignored when we present our health concerns, or when we reach an important milestone in care, or when we work hard to achieve goals. It is, sometimes, incredibly hard to jump through some of the hoops and obstacle courses which you demand of us... so please, give praise and positive feedback when we achieve them! 

To Be Afforded Effective Communication... With:  

  • Patient Education: As partners fully capable of learning, understanding, and being challenged and tested, we deserve to be taught about our health conditions, and how to manage them, either by our clinicians, or by referral to those who can properly educate us and guide us into better health choices. There will be levels of education which each patient can handle, but we can all handle something. Not being told 'you have x condition,' and sent on our own, with nothing else to cope or fight back.
  • Access to our data: As patients, and persons responsible for intimately managing a health condition, we should be allowed to know where we stand, with truth and honesty. Not to be left in the dark about one's condition, and progress... with only the provider being privy to the facts. 
  • Proper Feedback: As patients needing guidance, at times when we may not feel safe making our own decisions, by returning our calls, e-mails, or messages, promptly. Not by relegating our most important concerns to other, less informed health assistants or personnel, nor by ignoring our efforts to contact you. If you openly make yourself available to patients, please honor that commitment.
  • The whole story: As partners and patients who need ALL the information (and proper diagnostic testing) when it comes to choices for treatments, medications, and tools. Not being limited to a clinician's predilections, or the predilections of the company that might be paying them to promote certain tests, procedures, drugs, or tools. [We will gladly listen to your predilections (and sometimes choose them), because after all -- you are the medical professionals -- but you must understand that we are the experts at living with our condition, and need ALL the variables to be able to make informed decisions that might impact the fate of our future health, and our families.] 

To Be Afforded Quality Care... With: 

  • Continuous Education:  As patients receiving exclusive care from a clinician or provider, we expect that they keep on top of new emerging technologies, new research, new data, and new approaches to managing illness. Not to take the minimal continuous education courses, and keep practicing on potentially outdated methods from when they first graduated medical school, which could fail to improve a health condition, or even make it worse.
  • Embracing the researching patient: As partners, we expect to be embraced with respect when bringing in new data that can be studied, together, as a team. Not being chided for doing 'online research.' Medical research is growing by leaps and bounds, so it would be impossible for a provider to keep on top of all the information on their own... so why not partner up? We could solve a puzzle together, rather than 'against' each other. This is not about who has the diploma; it's about who ultimately gets to live with the decisions.
  • Referrals to Specialists: As humans who know and understand that not everyone has all the answers and information to everything, and that sometimes it's best to embrace those who may provide additional insight or more specialized care. Not negating, out of ego or greed, the chance to expand one's medical team and "think tank," in order to find positive answers to puzzling health problems. 
  • Committed Advocacy: As advocates for one another, by being our strong voice to health insurance companies, government, and especially the media, or those who might be ignorant to our condition, and thus seek to curtail our needs, and cut down our most essential and basic of services, remaining true to the Hippocratic Oath. Not by remaining silent to our needs, or cowering to the all-mighty dollar, because a businessman, with no medical knowledge, coerced you. 

For as many things as can be said about the healthcare field, and as much as times may change, I don't feel many are more important than these basic pillars, rights, and expectations. These are very essential, basic principles that we can all embrace and pursue in our futures. Often, we as patients can be difficult as well... and there should be some mutual expectations of cooperation, trust, and respect as "partners" and not subjugates. As the "Healthcare Street" is usually kept as a "One Way" road, I throw these out there as a sort of Patient's Manifesto of Rights and Expectations. 

The Gastric Bypass Hype... Is It Really a Cure?

The headline declares: "Curing diabetes via surgery, without weight loss". It's a bold statement. It's enough to make one stop, and read. I admit I did just that.

Every week, it seems, we are bombarded with a new article declaring the magical, curative qualities of gastric bypass surgery. These articles make it seem like gastric bypass is the simplest, most sensible way of managing diabetes -- and gosh darn it -- everyone ought to pursue it so we can put a stop to this overwhelming epidemic that's going to just take over America, and murder us all. (Please note I am being sarcastic here.)

I admit I don't have all the answers -- if I did, I'd have long ago found a cure for all of us, and retired to my white castle atop a hill, facing the ocean. But what I can tell you is that I have a lot of questions and skepticism. And so should you.

Whenever there are articles like this, I look for red flags:

  • Is the article edited properly? It might seem like a simple thing, but honestly, if someone in a professional, journalistic setting, doesn't care enough to edit their articles for grammar, spelling, content, and accuracy, they certainly might not care about outright lying to you to get some readership.
  • Is the article unusually chipper or eager to present this as an 'all around' solution to a problem? Does it present ALL sides of the debate? Does it present ALL alternatives?
  • Does the article portray accurate medical conclusions, information, and accurate explanations, or does it confuse the public about its target audience? 
  • Does the article present accurate, statistical data, as has been reported by other research outlets, and scientific journals? 
  • Is the study funded by third parties with deep pockets, and deep interests in the outcome of said study?

Taking all these questions into account, let's look at this week's gastric bypass article (which I have linked to above.)

Red Flag #1

The article starts off by telling us about Cristina Iaboni (a woman who was selected as a test subject for gastric bypass in leaner patients), and offers this description of her situation:
"Cristina Iaboni had the dubious distinction of being not quite obese enough. For all the pounds on her 5'5" frame, she did not meet the criteria for bariatric surgery to help control her type-2 diabetes.  
Yet six years of medications and attempts at healthy living had failed to rein in her blood glucose, leaving Iaboni terrified that she was on course to have her kidneys fail "and my feet cut off" -- common consequences of uncontrolled diabetes." 
Right off the bat, I'm kind of concerned about the quality of medical care Mrs. Iaboni may have received. Did her medical team question everything that needed to be questioned? Was she on insulin? When I read "6 years of medications," it literally screams at me that they kept her on every oral medication combination out there, and did NOT put her on insulin, like they should have. What kind of 'healthy living' changes did she attempt to make? Was she she still consuming a high carbohydrate diet, and just substituted her carbs for wheat, and whole grains? Did she even know how to carb count? Did her doctor ever test her for antibodies, and is she a LADA, instead? While the article declares she's 'cured,' I have the strong feeling this woman might rebound down the road.

Red Flag #2


Follow this logic statement with me: "If smoking triggers lung cancer, than smoking cessation should cure cancer."

Oh, it doesn't work that way, you say? Once you have it, you're stuck with it? Oh. Then why do some media and some 'researchers' assume that if obesity triggers diabetes (in those who are genetically predisposed, mind you), that losing weight should cure the diabetes?

The simple answer is "I don't know." The complex answer is "Because they probably have something to sell you."

Certainly, one can assume smoking cessation helps better manage cancer -- I am sure. One will be healthier, and respond better to treatments, and will have a stronger immune system... But one cannot say one is suddenly cured of the cancer. (Even when one is in remission.) Diabetes and weight loss are much the same: weight loss merely makes one healthier, and be able to respond better to treatments (ie, be more insulin sensitive, use less insulin and medications, sometimes none, etc.) These are only ways of tightly controlling diabetes, though, and slowing down it's progression. The absence of medicine is NOT an absence of illness. In this case, it is the strict diabetic patient's regimen that is the patient's medicine. The pancreas has damage, and this damage is irreversible, thus far. It is not, suddenly, magically healed.

Interestingly, this article seems ready to admit (though hesitantly so) that gastric bypass -- since people seemed to be 'magically' better just days after surgery -- proves that a diabetic 'cure' is NOT about weight control, or weight loss. However, here is where the red flag comes in: they are NOT willing to admit that the extreme dietary restrictions a patient must submit to (caloric and, consequently, carbohydrate level restrictions), post op, will play a role and immediately make less glucose available to the patient, and therefore, less high blood glucose issues. Now, normally, a patient who chose to control diabetes with diet and exercise would take a bit longer to achieve euglycemia (or normal blood glucose levels) when consuming a diet lower in carbohydrates and eating 'normal' amounts of food -- but they don't get a head start. A pre-op gastric bypass patient has to be on a type of fast with limited food and liquid intake, so they're already starting out with less available glucose in their system for a couple of days. Yes, they are going to have great numbers in just a few days. Barring other variables, yes, it's that simple, sometimes. I don't think this is rocket science.

Quite frankly, a patient could just go on the restricted diet, and skip the surgery, and achieve similar results... And not that long ago, some of these 'researchers' were practically claiming this same argument: A 'very low calorie diet' could cure type 2 diabetes. 


This article though, quickly sidesteps the discussion and dismisses it without much more than an acknowledgement.


Red Flag #3


The idea that type 2 diabetes begins in the gut is not a new one. It has been, however, a seldom reported one.

More commonly, you see articles speculatively linking the bacteria most known for leading to peptic ulcers (h. pylori), to endocrine disorders (as well as diabetes), and these have been quietly making the rounds since at least 2009, maybe even earlier. There's even an interesting study dating back to 1999, and involving children with type 1 diabetes, insulin requirements, and the presence of h. pylori. The most recent finding came this month, and it involves h. pylori and it's impact on A1C.

The underlying message is clear: bacteria, and inflammation, alter the body's ability to process glucose -- whether in the stomach, or in the gut.

But are the researchers missing the obvious clues? They mention that 'in the past,' patients with peptic ulcers who had surgeries altering their stomachs, and gut connection, 'cured' their diabetes. Or did they just achieve better control of their diabetes because a.) they were now having to, forcefully, eat far less, and b.) the surgery removed chronic inflammation from bacterial infection (which would have dramatically raised blood glucose levels)?

Other articles, and research, have pointed to a bacterial imbalance in the gut as a trigger to an imbalance in processing glucose, and development of type 2 diabetes, but they do NOT suggest surgery for 'curing' the disease. In fact, they suggest a more preventative method -- receiving gut microbiota transplantation. This seems to me like the less invasive, less dangerous, less costly and time consuming, way to go when it comes to researching a cure. Why are we not investing in this? Why is there such a PUSH for getting this dangerous surgery?

The attempts to also connect this surgery to a potential 'cure' or reversal of type 1 diabetes seem a bit far fetched, and improbable to me, and make me question if this researcher has a proper understanding of the etiology of type 1(a) diabetes -- and that it isn't just an insulin insufficiency scenario. I'm pretty sure people need insulin to live, and for many various metabolic functions, and just 'bypassing' a gut mechanism isn't going to make a person insulin independent. I'd like to see more than just three sentences in a poorly edited FOX news article, on the matter.

Red Flag #4


Numbers.

These articles always seem to exaggerate diabetes incidence numbers. This one is no exception. It claims that 8.3% of the world's population has diabetes, and that 11.3% of Americans, have it. Honestly, I don't know where the 11.3% figure came from, with these folks -- but according to the most recent data (released January 26, 2011 -- and not the 2010 date these folks claim) released by the American Diabetes Association, only 8.3% of Americans have diabetes -- and this includes all types, and the undiagnosed. 


Similarly, these folks make these grandiose claims for the 'remission' rates of Roux-en-Y to be 80-85%, and to be incredibly superior to other forms of gastric surgery. But major studies DON'T show that.
"New research reports that no procedure for weight loss surgery is any better at treating diabetes than another. The study, presented May 7 at the International Congress of Endocrinology/European Congress of Endocrinology in Florence, Italy, uses a large ongoing study to show that improvements to diabetes in patients undergoing such surgery is likely to be due to the degree of weight loss itself rather than the type of procedure." (http://www.sciencedaily.com/releases/2012/05/120507102225.htm)
And here's a more startling fact...
"Weight loss surgery is not a cure for type 2 diabetes, but it can improve blood sugar control, according to a new study published in the British Journal of Surgery. Whereas some previous studies have claimed that up to 80 per cent of diabetes patients have been cured following gastric bypass surgery, researchers at Imperial College London found that only 41 per cent of patients achieve remission using more stringent criteria." [emphasis added by me] (http://www3.imperial.ac.uk/newsandeventspggrp/imperialcollege/newssummary/news_4-1-2012-13-32-26)
And that's the ticket here, isn't it? What kind of criteria are these folks using to claim someone is cured? What are their A1Cs, now, and what are their average blood glucose numbers like? I've had folks tell me "I have an A1C in the 6.5% range, so I no longer have diabetes." But wait a minute? That's the number used to diagnosed diabetes to begin with! 

Hey, but you no longer need medicine (for now, anyway), so you must be cured, right? It sounds so pretty... It sounds like such a good sell.

And because it sounds like such a good sell... I give you:

Red Flag #5
"The cost of the bypass surgery is covered by a grant from Covidien Plc, which makes laparoscopic instruments and surgical staplers." 
Oh, so let me see... the people who profit the most from this surgery are the ones funding a study to tell me how awesome this surgery is, how high a success rate it has (even though it is absolutely not supported by independent studies), and how I will just be so cured.

Hmmmmmmmm. Let me think about that. Fox guarding the hen house much? This reminds me of last year, when the ADA published a study done by the Australian Dairy Association, claiming that milk consumption lowered risk of diabetes.

Of course you're going to tell me it's awesome! You want me to buy more of it, and you want me to fall in love with it. You need to make money, too, like everyone else! It's MARKETING.

The problem comes when the money making interests muddle the big picture, and really go against the best interests of the INFORMED patient.

What am I trying to get at, with this blog post? 


Should you avoid gastric bypass? Is it a dangerous alternative?

These are questions you must weigh for yourself... but what I would like to see is for patients to be able to weigh the TRUTH against the hype. NO ONE should promise that surgery will be a success, that it will heal and cure diabetes, or that it will be complication free; but, instead, they must help guide the patient to a point where they can soberly weigh their current health risks against the surgery's very real risks and potential failures. It is easier to accept the roll of the dice when we know that risks are possibilities -- and when we aren't lead to believe that this is just a simple, routine procedure, that will fix our woes forever.

More importantly -- the type of lifestyle changes required by these surgeries are far more demanding than say, pursuing a low carbohydrate regimen (like Berstein's Diabetes Solution, or Atkins), or even raw dieting. If a patient fails at these, or simpler life style changes -- when their life is not at stake -- what makes them feel they could do okay with the dietary demands of such a surgery? Because they got 'two weeks' of psychological counseling pre-op? Disordered eating, and compulsion, take years of counseling to improve (much more to 'fix')!

Additionally, studies have shown that after some time, people's diabetic symptoms may return, and some folks even regain weight and end up pursuing additional gastric surgeries. I am not entirely sure that the costs of surgery, with it's attendant complications, are worth my getting a 'free pass' for a few more years; especially, when I can just give myself that free pass with a more calorie restricted, low carbohydrate diet.

And I don't know about you... but I just like eating food in portions larger than a peanut.