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Friday, May 25, 2012

WHY DO WE STAY?

From the news: "Dr. Sharad Shripadrao Pandit in Birmingham, England was accused in Coroner's Court this week in an extraordinary case of alleged malpractice. The parents of Alina Sarag reportedly called the GP more than 50 times about his ailing over four-and-a-half months. They testified that Pandit accused them of mollycoddling the girl and said that her symptoms were the result of being "lovesick." She then died for tuberculosis."

It boggles the mind and yet it does not.

How many of us have had the same experience of a doctor repeatedly ignoring our symptoms, and even signs of disorder and possible disease?

I found this article at another site, not medical but legal. The responses were interesting in that many wrote the same reply: Why did they continue with this doctor?

It is a good question, one I have asked myself when I have stayed with a physician who unquestioningly did not have my best interests at heart.

A few years into the trigeminal neuralgia, after the first surgery worked and then failed, my Philadelphia based neuroophthalmologist suggested I see a doctor closer to where I lived, in NYC. I adored my doc but it made sense to leave him.

Unfortunately he did not have a recommendation. I ended up with Dr. Barrett, whose name my mother got from the daughter of an acquaintance of my hers.

The experience with him was awful.

Years later I read his chart notes. "There are days like today when I believe in her pain." He never said that to me and it made no sense: the surgery proved I had trigeminal neuralgia, as did my signs and symptoms. He was erratic, saying things like "If you jump out the window you will only break your ankles because we are on the second floor." in response to absolutely nothing about jumping out a window or hurting myself, or when I commented on his seersucker jacket "I like your coat.", saying "You mean I don't look professional?" I tried to ignore his strangeness, hoping he could help me. I stayed with him, not knowing any other doctors in NYC. Had he said "I think you are a malingerer." or "I don't believe in your pain." I would have gone running back to Dr. Schatz.

After about a year, with no benefit from anything he suggested, I called Dr. Osterholm, the surgeon whose operation had worked. He agreed to redo it. Once I was back in the hospital he changed his mind. "I want you to have a thermocoagulation rhizotomy (killing the nerve with heat) instead. It is less risky." Then he added the killer: "I don't know how to turn on the machine. Dr. Martinez has to do it." I neither liked nor trusted Dr. Martinez but Dr. Osterholm replied to my repeated entreaties "Please can't you do it?" with his mantra "I don't know how to turn on the machine."

Instinct kicked in, as with the above neurologist. Get away, get away quickly. But the pain made me stay. Uncertainty made me stay. Feeling helpless and caught made me stay.

I get why the parents in the story stayed, and tried and tried to get this doctor to respond. They trusted him/they felt ensnared in the feeling of 'this is my doc, how could he not care, how can he hurt me so?'

Too many stories, in our own lives, and in the news. We need to give the docs less power. We need to remind ourselves that ultimately we are in the driver's seat. And with that comes the answer to 'why didn't they call another doctor?' And the courage to pick up the phone and find someone else.

5 comments:

  1. The challenge is to find the least invasive, toxic, difficult and expensive approach possible.
    az medical marijuana

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  2. They are here to help people to make pain bearable.

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  3. Another reason the parents may have stayed with this bad doctor is because in England it is very hard to switch from one doctor to another. You are assigned a doctor and that's it. I've talked with many chronically ill people in England who have been or are being treated by idiots and have asked them why they don't just go see another doctor, their answers are always that they can't do that with their free government healthcare, there has to be a major reason for them to approve a switch. The only way for them to switch is to pay a private doctor who is in private practice and a lot of chronically ill/chronic pain patients just can't afford that.

    This is one of the many reasons I am so worried about the new universal health care that is coming by 2014.

    The other thing I am worried about is the whole guidelines to treatment thing. In England the doctors are required to follow each step when treating a patient, even when those steps are not appropriate for a specific patient. By law they have to try each step and prove the step failed completely before they are allowed to go onto the next one. Sadly this means patients who they know need to go straight to step 3 (for example) are forced to spend months doing step 1 over and over then step 2 over and over until they meet the criteria for a failed step, then and only then can they go to step 3 which should have been done in the first place.

    Our universal health care will have the same procedures in it. Physicians will be given guidelines with lists of treatments that must be done. If they skip a step they will be fined $5,000. If they do it again, they get a larger fine and possible jail term of 6 months. These guidelines will include pain management and how to handle the pain based on diagnosis, which sucks because my major issue for pain doesn't have a diagnosis code. I am expecting to lose most, if not all, of my pain management medications in 2014 when Obamacare goes fully into action. Honestly, this scares the crap out of me.

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  4. I am not aware of these guidemines within the ACA.
    Of course now we have the situation with private insurance for referrals if you have (forget the name for some reason) that kind of insurance.
    The ACA is not universal health care, that is what many people wanted it to be. You will still have your choice of doctor for instance.
    California and connecticut were 2 states that had fail first laws where you must use the generic medications first no matter what your experience with them before the doc could prescribe brandnames (I think it may be more then that but that was the gist as I understood it).
    I know in both those states campaigns were mounted to change that law and was successful, I believe in one if not both so standing our ground against these kinds of laws had made a difference.
    I am not sure where you got the information on ACA but many of the provisions will not go into effect for a while yet, for instance medicare D will take until 2020 to fully phase out the 'donut hole' and it is definitely not universal health care.
    As it stands insurance companies are doing what you are afraid of, certifying whether a patient can get a procedure or not, making guinea pigs of us in a way, since we are dependent on them, on their nurses and others who make the decisions as to what direction our docs can go.
    For pain patients especially this will always be a problem since our treatments are not so easily boxed up as for other diseases/disorders like diabetes (iinsulin, specific meds) or cancer (chemotherapy).
    Thanks for all your comments. I appreciate not only the time you are taking to read my posts but also the work that goes into taking the thought and time to comment.
    Thanks. carol

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