PDA

View Full Version : Chasm between patient, doctor


xMenace
10-24-2009, 08:28 AM
Diabetes may create a chasm between patient, doctor -- latimes.com (http://www.latimes.com/features/health/la-hew-myturn26-2009oct26,0,6593991.story)

Diabetes may create a chasm between patient, doctor

Healthcare professionals and diabetics should work together to help get blood sugars within the target range.
By Jessica Bernstein

October 26, 2009


Ask the average healthcare worker about the biggest problem in diabetes care today and he or she will probably tell you that it's getting patients to "control" their blood sugar levels.

The concept of control is rampant in healthcare. With puffed chests and reassuring certainty, the medical establishment regularly touts, "She's got her cancer under control," or "He's learned how to control his Tourette's syndrome."

But what most people don't realize is how the concept of control is unusually emphasized in the diabetes community. The medical establishment has gone so far as to create a new definition for the word. When doctors ask someone with diabetes, "Are you in control?," they mean, "Are your blood sugars balanced?" and "Are you following the doctor's orders?"

Most people are also unaware of the treatment that people with diabetes receive when their blood sugar levels are "out of control." It's the dirty little secret that nobody wants to talk about. It's the thing that medical professionals don't want to admit. People with diabetes of all ages, from all walks of life, are regularly reprimanded, shamed and degraded by healthcare professionals when they don't meet medical standards for normal blood glucose levels.

One adult patient described the experience of being wrongly accused of "noncompliance": "He kept bawling me out, telling me that I wasn't minding him, and I knew that I was. He told me right then and there, 'You're just plain not minding me.' And I said, 'I know better -- I am.' "

Diabetes educator Maureen Anthony describes the typical reaction she receives from diabetes patients: "When I enter a patient's room and announce that I am the diabetes nurse, they actually cower like whipped puppies."

Daryn Stier, a psychotherapist with Type 1 diabetes, explains how many diabetes patients have gotten to the point where they simply avoid their doctors: "I've talked to countless people with diabetes. When they have high blood sugar numbers, they don't go see their doctor. They expect to be told off . . . or feel like a failure in some kind of way. And I think it's an unfortunate relationship that exists between the medical establishment and person with diabetes."

What's driving all of this? How did we get to the point where doctors have come to view diabetics as errant children in need of a good spanking while patients are scrambling to hide their report cards so that they don't get the belt?

Disability writer Lennard Davis would say it all started during the industrial revolution. Davis asserts that it was then that the body came to be seen as an extension of the factory machine, which led to the idea that there is a mechanical perfection within the human body.

Yet, this notion that our bodies are machines that can be perfectly controlled is blatantly discredited in the case of diabetes. San Francisco resident Jesse Foster, who has lived with Type 1 diabetes for 40 years, explains, "Even to this day, diabetes is just a difficult disease. You try to do all the right things, and then you kind of go . . . but how come [my blood sugar is] 250 or 260?"

What's ironic is that healthcare professionals readily acknowledge that there are a multitude of factors that impact a blood sugar levels -- emotions, stress, illness, hormones, insulin absorption, metabolism, etc. Yet, there's almost always an assumption that if one's blood sugars are not "in control," it's because the person is ignorant, incompetent or "noncompliant."

Now, what about all of the healthcare professionals who are reading this and tearing their hair out saying: "People have no idea what we have to deal with. You try getting the average couch potato to start exercising and to cut down on their Ben & Jerry's. For every person with diabetes who is diligent about their care, there are 10 others who aren't. So yeah, we'll try anything to get patients to break out of their denial and start dealing with their condition."

Yes, it's true, there are many people with diabetes who aren't practicing optimal care and some who aren't taking care of their conditions at all. Although there may be valid reasons for why this mind-set has developed, it's clearly created a serious problem in the diabetes community that's interfering with diabetes care.

Diabetes psychologist Barbara Anderson explains how it's more productive to be honest with diabetes patients about the limits of control, "You have to be able to work with somebody to help them always strive to getting blood sugars in the target range but we can't blame them for high blood-sugar numbers. . . . Because it perpetuates the myth that the patient can achieve 100% control over blood sugars and that's not true. And once you can join with the patient and meet around that truth . . . then you really have a strong partnership between a provider and a patient."

Meeting around this truth will not eliminate the challenge of getting people to care for their diabetes, but it's an important step in helping patients deal with the reality of their conditions. For while we may be able to influence our health, ultimately we are not "in control." That's a hard truth for all of us to face.

* Bernstein is a psychologist in Oakland, specializing in chronic illness and disability issues. She's producing a documentary about diabetes. Contact her at Blood & Honey (http://www.bloodandhoney.org). To be notified about the next free "Taking 'Control' Out of Diabetes" talk, sponsored by the Juvenile Diabetes Research Foundation, e-mail jessica@bloodandhoney.org.

* My Turn is a forum for readers to recount an experience related to health or fitness. Submissions are subject to editing and condensation and become the property of The Times. Please e-mail health@latimes.com. Although we read every essay, we can't respond to every writer.


Copyright © 2009, The Los Angeles Times

Subby
10-24-2009, 08:35 AM
Thanks for posting John. It's great to see some attention and some opinions, brought to this issue. I think the article gets a bit overstated/reactionary at times, but it's a breath of fresh air to see it "out there" in the media somewhere.

fairyblood
10-24-2009, 08:48 AM
Wow, I am so impressed on how right this is written. I have never seen anyone talk about these issues so openly and honestly. News papers never get it this right. I am kind of in shock.

Thanks so much for sharing. :)

Evermont
10-24-2009, 09:31 AM
This is a point worth making I think. It should not be assumed that a person who's numbers ain't right "isn't doing it right". It is also too often true that people don't do what they are supposed to and some of them will lie and claim that they are.

The problem is that medical professionals can't tell the difference. If you were a doctor and you had 10 diabetes patients who numbers were not good enough - one of them doing everything right and nine of them cheating and lying about it and no way to know who is who - what approach would you take? If you throw a Rx of guilt for all 10 is that doing the greater good?

It's an important and under recognized point that our bodies are not as controllable as many would like to think. It's also true that behaviors are not as controllable as some would like to think. Honesty should be more common but the approach of using guilt may get in the way of that.

Subby
10-24-2009, 09:37 AM
This is a point worth making I think. It should not be assumed that a person who's numbers ain't right "isn't doing it right". It is also too often true that people don't do what they are supposed to and some of them will lie and claim that they are.

The problem is that medical professionals can't tell the difference. If you were a doctor and you had 10 diabetes patients who numbers were not good enough - one of them doing everything right and nine of them cheating and lying about it and no way to know who is who - what approach would you take? If you throw Rx guilt for all 10 is that doing the greater good?

If I had a patient that was cheating and lying - but I couldn't tell - then I'd need to take them on good faith, and try and be positive, intelligent, informed, helpful, listen well, non judgemental but firm if I feel there is a particular issue, respond with honest answers or alternative methods - just like I would for the other patients. There are NO other options if one would want to be a good doctor for any patient.

fgummett
10-24-2009, 09:41 AM
I agree Subby... I understand how frustrating it may be for some Doctors but it has been my experience that people respond in kind to the way they are treated... deal with them as responsible adults and they are more likely to behave as responsible adults... treat them as non-compliant children and don't be surprised if that is exactly what you get...

Thanks for posting this John.

foxl
10-24-2009, 09:47 AM
It is a good article, needed to be said, but I wish it also DID address the flip side -- there are so many patients who repsond to being told "It is not your fault," as meaning "It is not your responsibility to TRY to moderate your blood sugar by adjusting your lifestyle."

It can be hugely frustrating to deal with those individuals, and I can totally understand where healthcare professionals are coming from when they either blame, or shrug.

fgummett
10-24-2009, 09:53 AM
I don't see it is a question of blame or fault but rather that: in order to gain control of D you need to take responsibility for your choices from this point onwards. Some Doctors may have a hard time giving up that level of control to their patients. The blaming attitude may start, particularly where obesity associated with Type 2 is seen as the cause... and fingers are pointed at sloth and gluttony. I'm not convinced that this attitude helps anyone improve the D although it may make some others feel better about themselves by feeling justified to take the moral high-ground.

Subby
10-24-2009, 10:03 AM
It is a good article, needed to be said, but I wish it also DID address the flip side -- there are so many patients who repsond to being told "It is not your fault," as meaning "It is not your responsibility to TRY to moderate your blood sugar by adjusting your lifestyle."

It can be hugely frustrating to deal with those individuals, and I can totally understand where healthcare professionals are coming from when they either blame, or shrug.

Sure, you get people who just don't care and never will. But I'd also say that attitude is often a very strong manifestation of denial.

I'm not saying it's not frustrating, and I'm not saying that docs are necessarily the ones to deal with it, but it is a shame if the only response is to blame or shrug. I consider it a psychological aspect of the disease (as would be, some re-education to bypass the idea or excuse that no involvement is necessary) and it would be great if the medical system had a recourse to at least offer some kind of effective, targeted assistance to overcome denial and coping issues.

I suspect some individual clinics, doc/DE partnerships, etc, already would have a scheme sorted out to at least try and help the patient encounter their motivational forces. This is something that has just struck me and is a little out on the limb, but what I would like to see is for some DEs to be trained in counseling too, or have a DE/counselor position created.

yannah
10-24-2009, 10:12 AM
funny, most people and drs I have experience with.....the patient has had no education about control, hardly to speak of, in the first place, and to me that is the biggest problem out there related to this issue. My dr does not do much of anything, he told me so, he even asks his patients if they want a meter. He operates on his experience that type 2's on't do anything, so he will adjust meds and read labs. we argued about this.

I remember Blackberry came to df looking for help because his docotr told him if he didn't pull it together he would be dead in 5 years. his next AC was 6, he did it.

I can see both sides of this and it does make me understand what a dilema it all is for a dr.

Subby
10-24-2009, 10:22 AM
Blackberry's experience is a good example of a doctor being honest, open and firm with a patient compared to sighing and shrugging/being antagonistic about who is to blame for what.

Kelli, count yourself very lucky you have not been "shrugged" at. I've had it and far worse, from most of the 8 or so endos I've tried over the 18 or so years trying to find control solutions to out-of-the-box insulin therapy issues.

jenb
10-24-2009, 01:53 PM
I don't see it is a question of blame or fault but rather that: in order to gain control of D you need to take responsibility for your choices from this point onwards. Some Doctors may have a hard time giving up that level of control to their patients. The blaming attitude may start, particularly where obesity associated with Type 2 is seen as the cause... and fingers are pointed at sloth and gluttony. I'm not convinced that this attitude helps anyone improve the D although it may make some others feel better about themselves by feeling justified to take the moral high-ground.

I highlighted this sentence in Frank's response because this seems to me to be of great importance. Doctors are never "in control" of their adult patients, and to think they should be is patronizing and offensive. Adults must be given the information and tools to deal with their situation and offered assistance if they're having difficulty. Diabetics may not have medical degrees, but it is probable that within a very short period of time post-diagnosis, many are better versed in nutrition and blood sugar control than their physicians. If more doctors approached treatment of diabetes as a team effort of equals rather than a command-and-control situation I'm pretty certain that they would see improved patient outcomes.

Jen

foxl
10-24-2009, 07:42 PM
Subby getting DEs into training for counseling would have a HUGE effect -- great idea.

My point was, I guess, there really are not "sides" to the problem, so much as professionals responding to and consciously or unconsciously, assimilating patient apathy, in dealing with all patients. I do feel patients are part of the problem -- oh, not ME of course! ;) Of course as professionals we ask them NOT to respond that way, but they are human. They burn out.

Funnygrl
10-25-2009, 04:56 AM
My GYN always asks, "Who's managing your diabetes?" Uhm, me! Of course she wants the name of my endocrinologist, but if fact, he plays a very small role in my diabetes management. I pretty much use him just to write scripts and do most of the "managing" myself.

And then there's the doctor that ask you what your glucose was this morning- as if one fasting glucose result is going to decide whether my diabetes is in control or not. Geesh.

"Oh, you're on a pump? Does that mean you have to test your bg daily?"

yannah
10-25-2009, 05:18 AM
Blackberry's experience is a good example of a doctor being honest, open and firm with a patient compared to sighing and shrugging/being antagonistic about who is to blame for what.

Kelli, count yourself very lucky you have not been "shrugged" at. I've had it and far worse, from most of the 8 or so endos I've tried over the 18 or so years trying to find control solutions to out-of-the-box insulin therapy issues.

my point is that it must be hard for dr's to figure out what is needless mean chastisment and what is good firm instruction. I beleive this article does not take into consideration that sometimes people need to be told they are not taking it seriously and bad things are going to happen.

fenagle
10-25-2009, 06:15 AM
My doc just doesn't understand me. I have thought that for some time now. My D is a little different than most here, missing 2/3 of the pancreas and maybe making a tad of insulin at times. My first endo came right out and told me that she did not have any patients like me and we were going to be trying many different things, some would be good others not so good. She ended up getting sick herself and is no longer in practice. My endo now just doesn't know what to do with me. He is a nice enough guy but doesn't seem to be able to figure out how to handle my levels. My A1C is never low enough for him. Anyhow I use him for writing scripts and that is about it. he reminds me of the old stereo typical parent, do as I say because I say so and doesn't want to hear any excuses(reasons). As I have said in the past, I would love to find a doc here that is also a diabetic. Thanks for posting the article.