Monday, November 18, 2013

A Tragedy of Time Limited Medicine

Once upon a time, not so long ago or far away, there was a lovely little princess and her parents loved her very much. They brought her up beautifully to be educated, well-mannered and beautifully spoken. And they were all so happy. Even when she became a teenager, she was a perfectly adorable child. They were a perfect happy family.

Then the princess got abdominal and back pain. The family did not want to make a fuss. They were a stoical family who did not want to bother the doctor unnecessarily. So they waited until the next day to tell the doctor of the pain after it had gone.

In her two minutes of medical time, the lovely princess had a choice. Should she mention the abdominal pain first or the back pain. Her parents had diagnosed that her problem was her poorly little tummy so that is what she told the doctor. The doctor did as he should and asked her questions about her tummy and examined it like any good doctor should. Of course, there was nothing to find because the pain had already gone.

A diagnosis of Irritable Bowel Syndrome was made, which was the most probable diagnosis from a two minute history and examination. She was given some peppermint capsules and other antispasmodics. 

But they did not work. The patient returned three more times, always after the pain had gone because she was a very polite little princess. And every time, the story was the same. The doctor told her parents that there was nothing terribly wrong with her and there was nothing to worry about. So when she complained of this pain that modern medicine was not relieving, they ignored her.

It was only her friends, and the worst of them, that listened, sympathised and took her pain seriously. First, they recommended marijuana but that did not help much. So she worked her way up to heroin for her pain and that worked! But how does a teenage girl pay for her street heroin?

She had nothing to sell but her body. She became a prostitute. So her parents, based on the doctors' advice that there was nothing really wrong with her, kicked their princess turned drug using prostitute out of house and home.

She kept seeking medical attention, turning up to accident and emergency in the waning hope that the doctors could help her. Low abdominal pain. Prostitute. Heroin abuser. Send her to gynaecology. Low abdominal pain. Prostitute. Probably a sexually-transmitted pelvic infection. Heroin addict. Probably just putting on the pain and looking for a free hit. Do not give strong pain relief. Take some swabs. Return to outpatients in a few weeks for the results.

She never came back to find the results were negative and there was no sign of infection. She had all but given up on the medical profession. Somewhere along the line, a doctor had told her that it was almost impossible to diagnose the cause of the pain after it had gone and that the only chance of helping her was to see her when she had the pain. She deduced that there was no point turning up to a routine out-patient appointment.

Then one fine day, after about twenty of these admissions and seeing twice that many doctors, all of whom had done the right thing according to the cost-effective probability medicine that they are forced to follow, came across a doctor who made a subjective judgement and ran with it. He ignored standard practice and spent time with the patient to unravel the whole of their history. He was the first doctor to hear how and why she had fallen into that life. He was the first doctor to hear about the back pain.

It was a complex subjective impression. He saw that lovely princess behind the superficial words of this life that she had been forced into. Her voice and attitudes were not street wise and cunning but spoken of childish innocence. This life was not hers. Far from exaggerated, her pain was understated. Her body reacted more than her face or words. And there was something in the way that she moved....

Her luck was to find a doctor who was new to gynaecology. He was not yet indoctrinated to thinking like a gynaecologist. He was still thinking like a surgeon and urologist. He had seen her movements before. Patients with renal colic move like that. On examination, it was her kidney that was tender. That was the source of her pain.

No previous doctor had found time to sit her up and examine her back. It is not standard practice for patients complaining of abdominal pain.

I offered her the correct treatment for her new diagnosis, the strong pain relief that she had been denied, but explained that t could impede her diagnosis by the urologist I was sending her to. She declined. That was the type of person she was. 

Her face was alight with a hope that had been so long absent. 

A plain x-ray was at first confusing. There was nothing in the textbooks like this. Her ureters, the tubes between the kidneys and bladder, were visible. Their walls were three millimetres thick parallel lines when they should be invisible. The muscles should be so fine and thread-like that they are too small to see. 

There is only one thing that can do that it a muscle and it is long-term, stenuous exercise similar to a body builder going to a gym. She had been suffering severe renal colic on a daily basis since these symptoms started five years earlier. It was the only viable theory. It is not in the textbooks because this cannot happen. It never happens. Renal colic is one of the worst five pains humanly imaginable alongside heart attacks, labour, sciatica and a dislocated shoulder. An x-ray finding like this has never been recorded because the pain associated with it would be humanly intolerable. Something would have been done long before it got to this.

The admitting urologist would not believe me until he saw the x-rays himself. We were both sickened by the ordeal of pain that she had gone through. She had been through the worst pain imaginable for five years and nobody had helped her. The medical profession had failed her.

Every fairy story has a moral and lesson. First amongst the many lessons here is that when the history taking process is abbreviated, a practice that has been forced upon doctors culturally by politicians, accountants and administrators, the patient is effectively forced to self-diagnose and the patient decides which protocol they should be put into rather than the doctor. For that decision to be made by an informed and experienced medical professional, they need time to ask everything and examine everything.

The time constraints that are externally imposed on doctors forced a thirteen year old girl to choose between prioritising her abdominal pain or her back pain. Nobody was consciously aware of this or the terrible consequences of getting that decision wrong. She would be internally tortured beyond imagination by her own body for five years. Her beautiful life and future would be devastated. She would be forced into heroin use and prostitution because she got that innocent, uninformed and apparently innocuous decision wrong.

She never wanted that decision. She did not know what was wrong with her. She went to the doctor hoping and expecting an informed, trained and experienced professional to make that decision for her.

Standard  practice has replaced best practice on the basis of probability calculation in cost-effective analyses. Ninety percent reliability in as short a time possible is good enough for a bean counter despite the fact that more time means better diagnosis in the life and death world of health. This kind of probability medicine is accountants playing Russian roulette with health.

There are also important warnings about hyper-specialisation and the fragmentation of modern medicine. The evidence proves that modern specialists are exceptional at looking after their own part of the body. What nobody ever talks about, thinks about or dares investigate is when the patient gets into the wrong protocol and sees the wrong specialist. Medical care is usually exemplary when is in the right specialty but care is haphazard and flawed outside that specialty. Almost every medical tragedy I have come across has happened when the patient is in the wrong diagnostic protocol and specialty.

Fortunately, this real life fairy tale appears to have had a happy ending but I do not know what came next. My part in her care was over. She was finally in the best hands, the urological hands that she should always have been in. 

Still, two decades later I remember this case as if it were yesterday. The memory of going beyond the call of duty burns strong. The good that it did, the life that it saved, forever affected my medical practice. And the human satisfaction of these exceptional cases where you are a human clinician outperform standard practice, other doctors and the machines is what makes this job worth doing. It is the reward in itself for the effort and the only one worth having. It is reward beyond measure that too many doctors in the modern world are denied by imposed standards.

I would have loved to have known the ending but again, time pressures with other patients made that impossible. I doubt if any doctor had the time to even consider the important story, the huma story behind the disease. They will have cured her and never seen her again. They will never know if she managed to put this behind her and rebuilt her life as it should always have been.

As I reminisce, I hope it is true in my mind. My heart and soul know it is true. They saw her. They knew her instantly. Her essence shone through. That is what made me distrust the superficial facts. It is what makes me know that she had the inner strength to live the life that she should always have lived.

No comments: