World Kidney Day: The patient-physician relationship

[okarol]

World Kidney Day: The patient-physician relationship

I don’t have a typical relationship with my doctor. For one thing, he’s been my nephrologist for three decades.

By Judy Weintraub
March 2008

My nephrologist is not only my physician but also my mentor, protector, advocate, supporter, cheerleader, and trusted friend. And that didn’t happen overnight.

I have observed and experienced a lot in my 33 years of dialysis, and long ago decided to stick with Dr. Frank Strauss. After my second unfortunate attempt at transplantation, he encouraged me to switch from in-center hemodialysis to CAPD, a modality I did successfully for an incredible 12 1/2 years. When my third kidney transplant was heading downhill after three harrowing months, I had to console him as he stood at my bedside. “The kidney is going, but we are moving forward,” I told him. Dr. Strauss staunchly supported me in my quest to find a facility that would begin a home nocturnal hemodialysis program, which I am now grateful to be doing for more than five years. He was part of my 40th birthday celebration, attended a final performance during my foray into theatre, and last year, danced at my wedding.

On March 31, 2008, after 35+ years of practice, Dr. Strauss will retire from the field of nephrology. During that time, he has conducted himself with dignity, professionalism, and grace. His intelligence and wisdom have served his patients well. He has earned the respect of his patients, colleagues, and all those he greets by name daily in the hospital. I have learned a lot from this man and will continue to “roll up my sleeves and figure things out” as situations arise.

This crossroads in my life gives me the opportunity to reflect on what I need from a physician and what I need from the renal community at this stage in my life. I need a physician who is intelligent, insightful and well versed in the latest the field has to offer. I need someone who knows how to listen and can partner with me in the development and implementation of the best treatment plan possible. Scratch that––after all these years, I know I’m the one that implements my renal replacement therapy as well as exercise and nutritional programs. That’s the only way I’ve been able to do this for the long haul.

And what do I need from the renal community? In a recent article published in Nephrology News & Issues, it was stated that all home hemodialysis patients in the United States are being seen by a mere 5% of practicing nephrologists. Ouch. The superior outcomes and higher quality of life for those doing home therapies are well documented. We need to boost the level of awareness and education in our renal physician community––those just starting out and those who have been around for a few decades. They are the gatekeepers and truly have the ability to partner with the growing number of individuals willing to commit to this option for the considerable long and short-term payoff. I believe that with the right level of expectation, we can look forward to one day seeing a full 10% of the growing dialysis population achieving a quality of life they didn’t dream possible.

I expect that with continued advancement in the world of dialysis, there will be more fellow long-term patients around. There is a paucity of research related to long-term issues of dialysis-related amyloidosis and neuropathy, both of which are impacting my daily life. I have a strong hunch that everything we need is already on this earth waiting to be discovered. Now is the time for us all to roll up our sleeves and get to work. C’mon guys. I know we can do it.

Ms. Weintraub is a kidney patient on nocturnal hemodialysis living in Los Angeles. She is also a member of NN&I’s Editorial Advisory Board.

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http://www.nephronline.com/nephnews/index.php?option=com_content&task=view&id=2454&Itemid=1

[stauffenberg]

The small number of nephrologists treating patients on home hemodialysis is the result of the limited number of machines for home use and the limited training facilities for instructing patients on the procedure -- not because nephrologists discriminate against this type of patient.

Generally, while there may be exceptions, the average nephrologist, like the typical physician, is criminally negligent in his or her practice, but is saved from being de-registered and sued because all other doctors are just as bad and they set a ludicrously low standard of normal professional competence by which all are judged. 

An example of this is the drug benfotiamine, which was proved in extensive studies published in the prestigious medical journal "Nature Medicine" in February, 2003, to be able to block the development of diabetic complications, one of the most serious diseases facing the industrialized world.  Since that time, I have never once found any North American doctor who has ever heard of this ground-breaking drug, and every time I have given a photocopy of the article to any doctor, he or she has just smiled, folded it up, and put it in the 'circular file.'  Patients, on the other hand, are wildly enthusiastic about this drug and want to know where they can buy it.  What explains the disconnect?  Doctors are just concerned with going through the motions of practising cookbook medicine so they get wealthy without being sued and without having to think along the way, but patients want to get well at any price, and want to be treated according to the latest science, not the standard cookbook. 

[willieandwinnie]

Well, here goes....... I have to agree with stauffenberg (doesn't happen very often  ). The majority of physicians treat patients like they all came out of the same cookie cutter. The lady in this article is an exception to the rule. I have had knock down scream fights with more then my share. Most doctors allow some limited amount of time per patient (something like 3.2 MINUTES ??), that's why waiting rooms are jammed packed with overbooked patients. For the longest time nephrologists were against home hemodialysis (their reasons, patient ability, limited resources, training, partner, supplies, machines, emergency situations, the list can go on). It has only been recently that nephrologists and dialysis manufacturers have discovered that they make more money on home patients then in-center (more centers are pushing home hemodialysis) it's that almighty dollar talking again. It's a shame that most doctors push medications that some salesman has taken up my appointment time to smooth talk the physician into prescribing. I hate to go as far as saying they are criminally negligent but some are bordering on it. What ever happen to "for the good of the patient".  My situation is not like others and not all medicines work for everyone. See what you started stauffenberg. 

[st789]

I think my physicians spent less than 3.5 minutes with me.  Physicians these days want patients to be well-obedient and less questions the better.

[okarol]

An example of this is the drug benfotiamine, which was proved in extensive studies published in the prestigious medical journal "Nature Medicine" in February, 2003, to be able to block the development of diabetic complications, one of the most serious diseases facing the industrialized world.  Since that time, I have never once found any North American doctor who has ever heard of this ground-breaking drug, and every time I have given a photocopy of the article to any doctor, he or she has just smiled, folded it up, and put it in the 'circular file.'  Patients, on the other hand, are wildly enthusiastic about this drug and want to know where they can buy it.  What explains the disconnect?  Doctors are just concerned with going through the motions of practising cookbook medicine so they get wealthy without being sued and without having to think along the way, but patients want to get well at any price, and want to be treated according to the latest science, not the standard cookbook. 

Here's a doctor in New York (Dr. Michael Brownlee, Albert Einstein College of Medicine of Yeshiva University who has studied benfotiamine  http://www.medicalnewstoday.com/articles/46660.php Dr. Brownlee's current studies include clinical trials of benfotiamine, a synthetic derivative of the dietary supplement thiamine (vitamin B1) that has been prescribed in Germany for more than a decade and is generally regarded as safe. His initial research of benfotiamine found that it blocked all major pathways of hyperglycemic damage, and that it blocked formation of structural lesions in the retinas of long-term diabetic animals.