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Thursday, January 06, 2011

Comments

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Brian Riddle - Lynchburg, VA

Great Post Peter... It is very unfortunate that many centers/nephrologists do not practice informed consent. I have known several doctors who feel threatened when a patient wants to be involved and starts asking questions.
Many docs feel they are above you and feel they will be the ones to make any decision as we are just lowely patients who know nothing. I have seen this all too often in my personal experience.
I am very blessed that Dr. Lockridge is my nephrologist. He puts everything on the table and discusses in detail everything you need to know in order to make a decision. He puts his patients first and truly cares for each of his patients.

Peter Laird, MD

Thanks Brian, you are indeed fortunate to have a doctor as sensitive and informed as Dr. Lockridge. He took the data from the Toronto experience and instituted his own nocturnal dialysis program in VA. Would it be that all nephrologists would follow suit. It is all about respect and patient autonomy, something clearly lacking the dialysis centers in general.

MooseMom

One thing I worry about is how different my experience with my neph will be once I actually start dialysis. I do believe that I have received very good pre-dialysis care, but I also believe that one area in which my neph fails is patient education. Most of what I have learned about my condition and future renal replacement therapy options has been through online resources. I am more comfortable doing my own research in my own time than I am asking questions of my neph when I sense he doesn't have a lot of time because he has lots of patients to see. This arrangement has worked fine for me so far.

But this won't be so great once I start dialysis because that's when a team approach becomes vital. I'll need to be more assertive in my queries. It's up to me to set the tone for all question and answer periods regarding dialysis. I am fortunate in that I don't think I've ever met a doctor who has ever made me feel "lowly". I don't think it would ever occur to me to feel "lowly".

MooseMom

Wait a minute. I've just viewed the video, and gee...they make it sound so very easy. Also, they said that IVIG is used in the treatment of autoimmune disorders like those that attack the kidneys. Well, that's pretty much the definition of fsgs which is what I have. Is it true that IVIG is used to treat this disease? Is this yet another thing we have to learn by osmosis, or do these two women just have the wrong end of the stick?

roberta mikles

Brian, OH WOW< you are so very, very right.... The threat of an educated, informed patient.. WOW.. one who might point out preventable errors. I am reminded of some surveys I recently reviewed that had left out very VERY pertinent information about consent for reprocessed dialyzers.... just another example of not providing sufficient information that will result in patients making informed choices and decisions. If a patient is unaware of the side effects that can happen with reuse,, they might not agree to such.
Roberta Mikles - Dialysis Patient Safety Advocate
www.qualitysafepatientcare.com

Peter Laird, MD

Dear Moosemom,

IVIG has been used in combination with steroids, Rituximab and plasmapharesis for both primary FSGS and recurrent in transplants. Not much is written on this subject but in a couple of studies it looked promising.

Unfortunately, as Bill Peckham pointed out to me a couple of weeks ago, nephrology has the lowest number of completed studies in the last 30 years of any of the medical subspecialties. FSGS is no different with much more study needed.

Martin Ethridgehill, MBA, CHCQM, FAIHQ

The concept of participatory medicine is one that seems to be talked much about on one hand: how well it is actually lived in patient experience is another.

Even in this day and age I can imagine that many providers do not like or encourage patient limitations, nor having to comply with regulatory requirements that dictate specific elements must be included in all consenting forms. Add to that the building social momentum for actual engagement with a patient who wants to talk and may actually have found more information on the internet by looking through unconventional routes, and you have the building pressures that unseat entrenched ideas that a patients job is to follow what they are told.

True medical infomed consenting is a dialogue, joint decision-making that only occurs when the patient and provider are on equal terms: otherwise, patients will recognize the power dynamics and may not actually feel comfortable in expressing their needs, concerns, and most likely, FEARS.

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