By : Jon Danzig
I recently told an email buddy how I closely questioned every doctor about the treatment I would receive for my recently diagnosed acromegaly. This is what she emailed back to me just days before I was due to fly out to Erlangen in Germany for an operation to remove the tumour from my pituitary:
"I hope above all that you can feel completely trusting and relaxed about the medical team who will attend to your operation and your recovery. It is no good if you keep on challenging them. There are times when you have to select the people who you feel are the best professionals and then let them get on with it. Have you ever thought that your apprehension and antagonism may be part of the condition? You will not get yourself any better by 'doing battles' with doctors."
Oh, that got to me! And I felt that I had to reply with some of my own experiences about what has happened with me. Because, on the eve of flying to Germany for my operation, I find myself in disagreement so much of my buddy's advice.
This is what I wrote back to her:
Dear Email Buddy
Thank you for your advice about not challenging the medical profession... I know that your advice is well meant. Unfortunately, it is wrong. And I know that this is not part of my condition, because my mental faculties are still sharp.
If I had not challenged every doctor along the way, I would still not be diagnosed. Even so, it took four years from the onset of symptoms until the correct diagnosis of acromegaly was finally made.
I am flying to Germany tomorrow for transphenoidal surgery by one of the world's leading neurosurgeons for pituitary tumours, Professor Rudolf Fahlbusch, who has undertaken over 4,000 of these operations. But even the best are not infallible. The doctors in Germany forgot to give me any pre-op instructions. I phoned them several times before they eventually told me that I had to stop taking my medications four days beforehand and to fast the night before being admitted to the hospital. If I hadn't have asked, I would not have known this important information in time.
I have learnt how important it is to find out what doctors are proposing to do with me and to always ask questions, questions, questions.
Back in London, for example, it was only by being an assertive patient that I avoided losing my driving license. Recently, because of my illness, I had to have a visual field test, where you are in a darkened room and you look into a white lit globe with one eye blind folded. You have to press a buzzer as soon as you see a little white dot at the edge of the screen. But I could see two white dots. The doctor said, "Nonsense, there is only one dot there." I replied, "No, there are two dots actually." He insisted that there was definitely only one dot, and that I must therefore have double vision. I could see him write, "Double vision" on his notepad. But, fortunately, I have learnt to be assertive. I knew that I did not have double vision. So, I insisted that he get up and have a look for himself. And eventually, reluctantly, he did get up and have a look. And he said, "Oh, yes, there are two dots. I must have set up the machine wrongly."
That is typical of many stories I have to tell at the hands of the medical profession. I will have several chapters to write on the subject when I eventually write that book I have always promised myself! And I have spoken to many other patients with similar stories to tell. Only when you are ill do you find this out. Most people have a blind faith in the doctors, but they are only human, and sometimes they treat the illness and forget that there is a real human being there. And sometimes they get lazy and arrogant about their own "god like" abilities.
When my GP told me, after some hormone tests came back as abnormal, that there was nothing to worry about and I could come back and see him a year later, I didn't agree. I felt in my heart that something more serious was wrong. I went to see another GP. I said I'd like his opinion and also the opinion of a specialist. The GP got very annoyed with me. He said, "You want a second opinion and a THIRD opinion? I hardly think that's necessary." But I insisted it was necessary. And so, very reluctantly, he sent me to a local specialist. Who found the tumour.
The local specialist, however, told me that the tumour was harmless and "non functioning". He said it could be cured by drugs. But after six months of putting my "faith" into this local guy, I challenged his diagnosis. I sought out one of England's top endocrinologists for a second opinion. The local doctor was furious with me! But I was right to take charge. It was my life at stake, not his. The top endocrinologist found that, instead of being a harmless "non-functioning" tumour, it was actually dangerous and causing havoc with me and could certainly shorten my life unless surgery was performed. I had, I learnt for the first time, acromegaly.
I told him that I wanted to find the best neurosurgeon. From all my research, I knew what a tricky job it would be to remove this tumour, without the risk of blinding me, or destroying the pituitary all together. I had spoken to patients who had had surgery only later to bitterly regret not being an assertive patient. They had gone to a surgeon, the first one that their doctor had recommended, but a surgeon who just did this type of surgery maybe just a few times a year. As well as taking out the tumour, they took out or damaged the pituitary gland as well. I have spoken to these patients. They have a quite poor quality of life, mostly unable to work, and tethered to their homes. They have to take or inject a cocktail of chemicals each day to survive. Of course, I wanted to do my best to avoid that fate.
I insisted that the surgeon who performed surgery on me had to provide me with statistics. I learnt from the Pituitary Network Association that only when a surgeon had done at least 500 of these operations, at the rate of around two a week, could they really be considered competent. I wanted to know how many pituitary operations the surgeon had performed and what were the outcomes.
The specialist sent me to his favoured surgeon. I looked him straight in the eye. "Will you give me my best chance?" I asked. His reaction? He went bright red. I asked him about statistics. He coughed and spluttered. He could not give me any. I asked him how, in the absence of statistics, was I supposed to choose a surgeon? He replied, "Use your gut instinct." Well, when it comes to sticking fork-like instruments into my head, I need more than gut instincts to be able to choose who is going to do it!
Eventually, I found a wonderful neurosurgeon at the London Hospital for Neurosurgery. He is undoubtedly the best in the United Kingdom for this type of condition. But I still challenged him. And I honestly told him that I was scared. I needed reassurance. Being a good doctor, he did not take offence at all. He totally understood. He would be exactly the same in my shoes, he said. And he was wonderfully open with me, for which I shall always be grateful. He told me that if he had my condition, he would be straight on the plane to Germany to see Professor Fahlbusch. And, whilst he was sure that he could perform technically competent surgery on me, the results of Professor Fahlbusch were "spectacular" and he published all his results. He left me in no doubt that I should go to Germany, and my other research also confirmed this view...
So, I have summarised a four-year journey for you of how I have found my way to Germany. Four years of fighting before I got a proper diagnosis. If I had not pushed and pushed, the diagnosis would not have been made even now, and ... well, I don't like to write what might have happened to me.
Still, there is no guarantee on the outcome. But because I have fought so hard, I truly hope that I have increased the chances of a good result and reduced the chances of things going wrong.
Because I used to be a medical journalist I don't treat doctors as gods. If I was having my car repaired or my house decorated, I'd get three quotes and want to be sure that the people performing the work were trained, competent and had a good reputation. Why should I do anything less for my body?
If more patients were like me - and I would encourage every patient to be so! - then we would have better doctors and better outcomes. I don't propose that patients antagonize their doctors; after all, we need them (and they need us.) But there is nothing wrong with taking charge of our illnesses and forging more equal partnerships with our medical attendants. If you like yourself enough, you'll demand and command the very best for yourself.
But, as in all professions and walks of life, there are some "bad eggs" and only by being alert and truly informed is it possible to avoid them. You must avoid them.
The really scary thing is that it is here in the United Kingdom that unwitting, trusting patients – together with the closed-ranks of the medical profession itself – enabled a GP to become the world's worst peace-time medical serial killer. It is now known that Dr Harold Shipman, from Hyde in Manchester, killed hundreds of his patients, ruthlessly, by simply knocking on their front doors "just in passing" and pretending they needed an injection, that killed them instantly. (See http://www.telegraph.co.uk/news/main.jhtml?xml=/news/2002/07/20/ nship20.xml )
This doctor got away with murdering his patients for 20 years. Now, in any society a "Shipman" will no doubt be born at some time or another. That is not perhaps what is most shocking here. What is possibly more scandalous is that his fellow doctors, who had to co-sign his death certificates, apparently never confronted Dr Shipman and certainly never stopped him. Eventually, it was the daughter of one of his murdered patients who challenged what this doctor did and finally caught him out. It was brave of her, because everyone ridiculed her, and said she must not question the integrity of the local doctor, as he was such a revered figure. Now there is an public inquiry in England and the medical profession will not come out well from this...
At the Bristol Royal Infirmary hospital in England, many children who had heart surgery died mysteriously, when they should not have done. The reason was because three surgeons involved were incompetent. The children should never have died, these were routine relatively safe operations that, if performed at any other hospital, would not have resulted in the deaths of so many children. Other doctors and the management at the hospital must have known this, but nothing was said or done. It appears to me that doctors can band together, even when they know that their colleagues are, quite literally, killing their patients. No doctor would say anything...except one. He is, in my mind, a hero. He could not stand to watch the slaughter of children any longer, and he spoke up. As a result, there was a national inquiry and the surgeons involved were sacked. But what happened to this doctor who spoke up? Was he promoted or congratulated by his fellows in the medical profession? Not likely! He was castigated, to such an extent, that he could not work in this country anymore. He has had to move to Australia to work. What encouragement does that give to any other doctor to speak up against their fellow doctors whom they know to be incompetent, to the extent sometimes that they actually kill? (See http://www.telegraph.co.uk/culture/4724155/The-Killing-Fields-of-Harold-Shipman.html)
Well, you can see that this is a subject close to my heart. I have learnt to ask questions. What is this drug or procedure supposed to do? Why do I need it? Are there alternatives? How good are your results?
I have come to know that the doctors who frown upon me asking such questions are not good doctors, and I must avoid them like the plague. The doctors who welcome and encourage such questions, and give time to promptly and fully provide the answers, are the good doctors to look out for. And even better are the doctors who anticipate the questions that worried patients will have and provide clear and meaningful handouts. Such doctors are rare indeed! It's important to find such a doctor and to trust him or her – but never to stop asking questions or being an informed patient.
PS: I learnt a lot from www.pituitary.org and especially their article on how to find the right doctor at http://pituitary.org/get-answers/finding-the-right-doctor
Please take a look...it may save your own life one day! (Although I truly hope you won't ever be in such a position).