February 11, 2010

Blind Spots - the Good and Bad

I hope that the people at JJSDiabetes will read this.  I owe them an apology for posting on their blog.  It is clearly marked now that it is for members only.  If it was before, I will admit that I did not see it.  So I admit to having a punctum cecum (a blind spot).

The topic was about the Lancet Study and while they do say that each patient needs an individual plan, I made a comment about the study being faulty and poorly carried out.  My comment is at "Where Are "U"?" which is now several posts down.  A second post then offered another study and referred to an article by Janet Ruhl.  So now I need to apologize to Janet for getting her dragged into this as well.

Did it end there - no, not by a long way.  I received a rather nasty email from the person of the blog.  I admit I should not have posted a comment, but it is now the subject of a second post.

I can only pray that this doctor (see his litany of his education in the post) can recover from his punctum cecum and treat his patients with a little concern.  My post should not have been published since I am not a member, but the rage shown is over the top.   I made a mistake so I have to live with it.  Then he does even more by going after Janet Ruhl.  I will let you read his response to her article and she did not even post a comment.  Enough of this vent.  It just reinforces the topic below.
 
How exciting is the internet?  I had been working on this post and pulling ideas from other bloggers and forum members about patient - doctor problems.  The above example and the blog by Trisha Torrey from About.com of Jan 18, 2010 worked to bring my thoughts together.  Her article is about a problem we all have - a panctum cecum.  Then she tied it together with the medical community, and specifically physicians.  While I totally agree with her analysis and examples, I want to expand this to include the entire medical community.

This is not to be a put down of the entire medical community; There have been enough problems between doctors and patients with mistakes on both sides to generate a library.  Of particular interest was a comment by Trisha Torrey that bears emphasis.  When doctors ignore their blind spot (my words), "it's information we patients can use to help our physicians understand why it is they need to think harder.  Why they need to rustle up their best practices in differential diagnosis.  And why we patients need to hold their toes to the fire."

There are many times on the diabetes forums when we read of patients saying that when the doctor gives them the diagnosis, he gives them a handful of prescriptions, and says they will see you in three to six months or longer.  There are other versions about not being given testing supplies, or the worst, watch your sugar and see you in three months (no exact wording of diagnosis even given).

Doctors are busy and set about 15 minutes to see each patient.  The doctors often have little or no choice in this as the medical insurance companies often dictate the length of time for which they will reimburse the doctor.  This is a practice that needs change from a medical and insurance perspective.  When a patient is given a diagnosis of diabetes or any other disease, there should be extra time taken to explain the medicines, the treatment, and the goals that need to be established.

There are those (like me) that think that some of the examples happen because the doctor has not kept up with the developments in diabetes and wants to do some research before the next appointment.  Some doctors  have a hard time telling the patient the bad news, while others are afraid that the patient will follow their own course of action and not follow their instructions.  And this is true for some patients.

Why don't doctors make use of dietitians, certified diabetes educators, other specialists, or refer their patients to an endocrinologist?  Some doctors do not have access to these people because of being in small rural areas and too far from these resources.  Some think they are the only doctor the patient needs.  Others do not want these resources contradicting what they tell the patient and some just don't want to lose the patient.

Some doctors are locked into situations where they are told to work with specialists who will contradict them every chance they can.  Then we have the doctors that are confident of themselves, do make referrals, and deal with conflicting advice is a positive manner.  Many are understanding of their patients  and some actually talk with their patients and not at them.  If you are fortunate enough to have one of these rare doctors, treasure them, they are looking out for you.

Dr. Bill Quick suggests is his blog of January 23, 2010 about drug labels that we read the labels and the required FDA enclosures to "wow your doctor at the nest visit with all sorts of trivia you've learned".  Yes,  he went on to to give some excellent reasons for doing your homework.  Then he delivered the best reason - "After all, you're the one who's taking the medication, and you have the opportunity to learn more.  Go for it!"   Was his humor in order - maybe for some people and some doctors, but for diabetes patients, there has to be some concern if doctors view our knowledge in this manner.

We need to think about our doctors and the lack of information that we are given.  Applying the logic of Dr. Quick - the doctor is not the one that will suffer from the lack of advice or giving us poor information, we the patients are the ones who will pay the price, and suffer the complications.  Letting our doctors get away with this is not something we should accept.  Rather than allowing them to duck their responsibilities, we the patients need to "hold their toes to the fire".

Will Ryan states is his blog that less than half of the people with diabetes are receiving  education about diabetes.  This is sad.  While diabetes has many twists and turns, it is not unmanageable or uncontrollable.  No, we are not always in every situation going to have excellent control, but by learning the signs and what causes problems, we can prevent poor control.   We can keep the beast under good to excellent control despite our doctors, but their assistance helps even more.

Now while dietitians, diabetes educators, RN's, and any other specialist that is not a doctor, seem to march lock step with the ADA, we need to also hold their toes to the fire.  Some of these professionals are realizing that each patient is different and have requirements unique to them; and they are tailoring programs to fit the patient.   These professionals respect their profession, honor their jobs, and are those we can rely on and trust.  Others unfortunately, will not stray from an ingrained doctrine that is promoted by the ADA and will not hear of any deviation; and they will openly contradict any doctor trying to work with a patient to meet the needs of the patient.  They will sabotage the doctors for any number of reason.  They are supposed to be professionals, but they take any doctor to task for not sending all patients to them, a remark that the doctor makes and for a host of reasons.  Whether these professionals have a "blind spot" is self evident, and they need to change their profession.

Now we come to us - the patients with diabetes.  We need to learn that knowledge is power.  We have to become proactive in our care.  We have to understand how patient empowerment can help us.  This means that we need to educate ourselves and learn from every source available to us.  We need to know when we make mistakes and admit them.  Then we need to learn how to use this knowledge - and not just to "wow" our doctors.  Some people have wrongly assumed this means disagreeing with our doctors.  No Way!  It means intelligently discussing your care and treatment with your doctor(s).  It should include finding the right medicine with your doctor to fit your symptoms, body chemistry, and well-being.  Not all medicines work for every patient.   It will include discussions with your doctor about whether or not meds will be necessary for what length of time, and what the requirements are to be able; if possible, to get off a medicine.  It will also include what to do if you experience any of the side effects.

We need to continue our education to be able to maintain control of our diabetes and to know when, outside of regular office visits, to contact our doctor about a problem.  We need to learn what factors can influence our control of diabetes.  Some of the problems, in no specific order, are - stress and hypertension, sleep apnea, illness, inflammation, certain foods, the use of steroids (prescribed) to treat pain, depression, and many others.  These are things that we can learn how to control once we recognize them for what they are.  Easy, maybe not, but with the assistance of our doctor and the education we can accumulate, we can exercise some control and get back to nearer normal more rapidly.  So for this I will say we need to hold our own toes to the fire as well.

Before leaving this, I must mention a blog on February 9, 2010 by Amy Tenderich about Health 2.0.  There is much merit in the discussion she refers to and this should have a place for us in the future.  Follow the link she provides for some of the discussions.

2 comments:

DennieCraine said...

I'm not sure if I understand what you're saying. Although the degree of sarcasm in the JJSDiabetes post is way over the top, it does suggest your comments were foolish. How can you criticize a restrospective data analysis? I also have to agree with JJSDiabetes about the Janet Ruhl post. She's actually accusing doctors of purposely denying certain treatments? What credentials does she have other than the ability to read?

It looks as if you helped to close down the JJSDiabetes blog. That's a real shame. I ended up spending a couple of hours looking at the blog and found it to be extremely informative. I also noted an underlying theme in that the writer points out how patients may be their own worst enemy.

Once again, I don't follow your reasoning here and I don't yet see you back up your comments about that Lancet article yet.

DC

Bob Fenton said...

Yes, I was foolish in making my comment in the manner I did. A good friend had told me not to make comments when you are in a bad mood, and I did not take his advice. However, the damage has been done, first because I made the comment, and second because the comment was not deleted. I would have felt a lot better if I had just been emailed that my comment had been deleted and why. That is part of the reason it took me some time to respond to your comment - I wanted to have time to think. If a rational discussion had taken place, it would have been in everyone's best interest. When I read this blog, I reacted instead of asking questions which may have been more productive. And for that I am truly sorry.

A medical friend has also asked me why I did this. Part of my answer have been referring him this these comments. I will say that I can agree that patients can, at times, be their own worst enemy.

I have read the entire study results and yes, I did pay the fee to get it. A small group of us (not including Janet) do get together on the internet and discuss what we read and make our own comments some times. We do alternate in obtaining the full studies we have an interest in. I do not have a medical degree.

If I am to be blamed for Dr Shelmet's closing his blog, then I can only wonder if he was not looking for a reason, and I conveniently provided one. I have noticed some of the parts missing to his site in recent days. When the doctor chooses to go after someone who did not post, then maybe it is better that he close his blog. I will live with my embarrassment since I brought it on myself. If my apology was not accepted, then that is also too bad. And I did email him one.

I do think that he should continue and put this behind him, but I will not be commenting on his blog.

Bob