Doctors and patients often don’t understand one another especially when a definite diagnosis seems impossible. Doctors and patients are frustrated by the same problem and end up at odds with one another instead of partners searching for the same solution. This is a very insightful website from a doctor about how doctors think and how you can influence your doctor to best help you. I wish I had read this article years earlier.
When Doctors Don't Know What's Wrong
Monday, May 4, 2009
Sunday, April 26, 2009
Narrative Medicine
Too often women with autoimmune diseases end up being belittled by their physician or even blamed for making up their symptoms. A new field within medicine has emerged that will hopefully address the attitudes some doctors leave medical school with. As a female patient with autoimmune diseases that has been stereotyped more times than I would care to remember, this quote gave me hope that maybe someday doctors won’t resort to belittling their patients when they are actually frustrated with the patient's disease.
“Sick people need physicians who can understand their diseases, treat their medical problems, and accompany them through their illnesses. Despite medicine’s recent dazzling technological progress in diagnosing and treating illnesses, physicians sometimes lack the capacities to recognize the plights of their patients, to extend empathy toward those who suffer, and to join honestly and courageously with patients in their illnesses. A scientifically competent medicine alone cannot help a patient grapple with the loss of health or find meaning in suffering. Along with scientific ability, physicians need the ability to listen to the narratives of the patient, grasp and honor their meanings, and be moved to act on the patient’s behalf. This is narrative competence, that is, the competence that human beings use to absorb, interpret, and respond to stories. … it enables the physician to practice medicine with empathy, reflection, professionalism, and trustworthiness.” - Rita Charon
Narrative Medicine: A Model for Empathy, Reflection,Profession, and Trust
“Sick people need physicians who can understand their diseases, treat their medical problems, and accompany them through their illnesses. Despite medicine’s recent dazzling technological progress in diagnosing and treating illnesses, physicians sometimes lack the capacities to recognize the plights of their patients, to extend empathy toward those who suffer, and to join honestly and courageously with patients in their illnesses. A scientifically competent medicine alone cannot help a patient grapple with the loss of health or find meaning in suffering. Along with scientific ability, physicians need the ability to listen to the narratives of the patient, grasp and honor their meanings, and be moved to act on the patient’s behalf. This is narrative competence, that is, the competence that human beings use to absorb, interpret, and respond to stories. … it enables the physician to practice medicine with empathy, reflection, professionalism, and trustworthiness.” - Rita Charon
Narrative Medicine: A Model for Empathy, Reflection,Profession, and Trust
Sunday, April 12, 2009
Professional Napper
I just wanted to let everyone know that I’ve been fighting a flare recently and I promise to write another article within a couple weeks. Thought I would leave you with the “professional napper” comic strip.
Tuesday, March 3, 2009
A Patient’s Description of a Good Doctor
Due to recent negative publicity about healthcare and doctors in general, BMJ asked and interesting question on their website. The theme issue was: What is a good doctor and how can we make one?
There were lots of insightful responses from doctors and patients. As a patient who has struggled to find a doctor to give meaningful and compassionate care, I too was curious as to what makes a good doctor. The best response came from a patient, Louise Ward. Below is her description of a good doctor.
“For several years I was registered with a wonderful GP in my home town. I never appreciated him until I moved away to study at the University. I went from being an empowered individual to a patient number. There was no recognition that I had existed before I joined my new practice - they never referred to any of my previous doctor's notes. It was upsetting to sit across the desk from the GP, give an account of what had happened, and then find out that the salient points had not been recorded in my notes. My suggestions for what might be happening were treated with, I felt, derision. After all, what would I know - I'm a mere patient!
It got to the point where I would only see my GP if I had a fair idea of what was going on. If I was concerned or worried I'd return home and see my "real" GP as a temporary resident.
So why was one GP wonderful and the other not? My "real" GP became my expert best friend. He took an interest in me as a person and not as a set of symptoms; he knew when to speak and, more importantly, when to shut up; my history was that MY history not his questions with his answers; I felt empowered and never felt bullied into taking a course of action that I didn't want to follow. At the end of the day he seemed to realize that I might be better placed to make suggestions as to what was going on.
My experiences lead me to make the following as a summary of a good consultation. The doctor asks questions; the patient gives answers; the doctor uses their knowledge and skills to help the patient make sense of their answers; the patient ultimately decides what they want to do with their doctor's support. My unhappiness arose when the doctor filled in her own answers.”
The bottom line is a good doctor is one who listens and respects the patient as a partner in healthcare.
There were lots of insightful responses from doctors and patients. As a patient who has struggled to find a doctor to give meaningful and compassionate care, I too was curious as to what makes a good doctor. The best response came from a patient, Louise Ward. Below is her description of a good doctor.
“For several years I was registered with a wonderful GP in my home town. I never appreciated him until I moved away to study at the University. I went from being an empowered individual to a patient number. There was no recognition that I had existed before I joined my new practice - they never referred to any of my previous doctor's notes. It was upsetting to sit across the desk from the GP, give an account of what had happened, and then find out that the salient points had not been recorded in my notes. My suggestions for what might be happening were treated with, I felt, derision. After all, what would I know - I'm a mere patient!
It got to the point where I would only see my GP if I had a fair idea of what was going on. If I was concerned or worried I'd return home and see my "real" GP as a temporary resident.
So why was one GP wonderful and the other not? My "real" GP became my expert best friend. He took an interest in me as a person and not as a set of symptoms; he knew when to speak and, more importantly, when to shut up; my history was that MY history not his questions with his answers; I felt empowered and never felt bullied into taking a course of action that I didn't want to follow. At the end of the day he seemed to realize that I might be better placed to make suggestions as to what was going on.
My experiences lead me to make the following as a summary of a good consultation. The doctor asks questions; the patient gives answers; the doctor uses their knowledge and skills to help the patient make sense of their answers; the patient ultimately decides what they want to do with their doctor's support. My unhappiness arose when the doctor filled in her own answers.”
The bottom line is a good doctor is one who listens and respects the patient as a partner in healthcare.
Saturday, February 21, 2009
What’s Wrong with Health Care in America
Dr. Fogoros, a cardiologist, has written a great article describing why the medical system behaves the way it does and more importantly how to best protect yourself from the system.
Here are some of the highlights from his article:
“The fundamental issue with American health care is the rationing problem. This is not a problem of whether to ration - we don't have any choice about that, since we simply can't buy all the health care that might be useful for every individual - but how to do it. And since rationing health care is politically unfeasible (despite the fact that we don't have any choice about it), there is only one answer to the "how" problem: we've got to ration covertly.
Covert rationing means rationing (that is, withholding care) without mentioning it to anybody. And the only way to accomplish that is to have the doctors do it, quietly and whenever possible, subconsciously, at the bedside. Covert rationing requires that doctors, when making decisions about what tests to order and what care to give, must take into account something other than what's best for the individual patient sitting before them. That "something other" might be any of a multitude of factors, such as the regulations promulgated by the feds, personal financial incentives promulgated by health plans, interpreting scientific data with a certain slanted viewpoint, or peer pressure to behave in a certain way for the good of the profession or the specialty or the practice (i.e., protecting turf.) The point being that covert rationing - which, like it or not our society has fully embraced - requires, as a fundamental tenet, the systematic destruction of the doctor-patient relationship.
[This destruction of the doctor-patient relationship] explains all the seemingly bizarre behavior we see taking place every day in the American health care system. While you may be lucky enough to find a doctor who is adept at "gaming" the system, or who will take personal risks to get you what you need, you certainly can't count on that. Especially when you are dealing with a potentially life threatening disorder. You can no longer assume that whatever needs to be done will be done. You can't be passive. You've got to take responsibility for and control over your own health care.”
For the full article see:
Why the Health Care System Behaves the Way It Does
Managing Your Doctor
Managing Your Health Plan
Managing Your Own Health
Here are some of the highlights from his article:
“The fundamental issue with American health care is the rationing problem. This is not a problem of whether to ration - we don't have any choice about that, since we simply can't buy all the health care that might be useful for every individual - but how to do it. And since rationing health care is politically unfeasible (despite the fact that we don't have any choice about it), there is only one answer to the "how" problem: we've got to ration covertly.
Covert rationing means rationing (that is, withholding care) without mentioning it to anybody. And the only way to accomplish that is to have the doctors do it, quietly and whenever possible, subconsciously, at the bedside. Covert rationing requires that doctors, when making decisions about what tests to order and what care to give, must take into account something other than what's best for the individual patient sitting before them. That "something other" might be any of a multitude of factors, such as the regulations promulgated by the feds, personal financial incentives promulgated by health plans, interpreting scientific data with a certain slanted viewpoint, or peer pressure to behave in a certain way for the good of the profession or the specialty or the practice (i.e., protecting turf.) The point being that covert rationing - which, like it or not our society has fully embraced - requires, as a fundamental tenet, the systematic destruction of the doctor-patient relationship.
[This destruction of the doctor-patient relationship] explains all the seemingly bizarre behavior we see taking place every day in the American health care system. While you may be lucky enough to find a doctor who is adept at "gaming" the system, or who will take personal risks to get you what you need, you certainly can't count on that. Especially when you are dealing with a potentially life threatening disorder. You can no longer assume that whatever needs to be done will be done. You can't be passive. You've got to take responsibility for and control over your own health care.”
For the full article see:
Why the Health Care System Behaves the Way It Does
Managing Your Doctor
Managing Your Health Plan
Managing Your Own Health
Saturday, February 14, 2009
More Research Labs for Antibodies
I also had blood sent to a research lab in Oklahoma. I had some confusing lab results, which sent doctors on a search for determining my specific antibody. I had a positive C-ANCA antibody test, which is supposed to by 90% specific for Wegener’s, but from my symptoms I obviously did not have Wegener’s. Since I had symptoms of myositis and a cousin who has Dermatomyositis, my blood was sent to a research lab that specialized in myositis antibodies at Oklahoma. Oklahoma also has a research lab that deals with Lupus and other autoimmune disease related antibodies. These labs are capable of multiple types of tests to confirm antibody specificity. However, even with all their technology they unfortunately were still unable to identify my antibody.
Oklahoma research blood test information and requisition forms:
OMRF Clinical Immunology Laboratory
OMRF Myositis Profile
Oklahoma research blood test information and requisition forms:
OMRF Clinical Immunology Laboratory
OMRF Myositis Profile
Thursday, February 5, 2009
APS Antibodies Found in Spinal Fluid
It is a relatively new concept to test patient’s spinal fluid for antibodies. I displayed multiple symptoms of APS, however I did not have a single positive blood test result. Because I had been having daily headaches for over six months and I was on immune suppressant drugs, the doctors decided to order a spinal tap to rule out an infection. Since spinal fluid would be available, they decided to send some of the spinal fluid off to the APS lab in Indiana as well as some of my blood. My spinal fluid ended up being positive for anti cardiolipin. However, my blood had been tested for that antibody for over 13 years by multiple labs and my blood was never positive. This was supportive proof for the theory that the blood brain barrier can make antibodies separate from the blood stream.
Research article from PubMed
Research article from PubMed
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