TRUST US
We Know What We're Doing!?

By Hilary Butler

The time any parent dreads is when you have to take yourself, or your child, to hospital. You might think of ‘ER’, or ‘Middlemore’ and other programmes that portray hospitals as the saviours of mankind. And at times, that is true. And doctors can be very satisfied on those occasions that everything has worked out for them, for the person. It is very very important for you to have a family doctor who is honest, who will share information – and most of all, admit when they don’t know, or make mistakes. But what choice do you have in hospital?

In reality, most people don’t think about that. They just trust the system, thinking that, well, that is what they’re there for. They even go so far as to believe that ‘ER’ is where it’s always at. They don’t need to know anything, because they just go in there, relax, and the system takes over. In short, they abdicate.

And its only when things go horribly wrong, that they realised they’ve misjudged the system, and worse, betrayed themselves.

Sit back. Think about it. Just what do YOU KNOW about the hospital that services your area? Do you know what your rights are? Do you have even a clue about the meaning of basic medical tests?

You read WAVES because you wanted to make an informed choice about vaccines. And most of you read WAVES to give strength to the conviction that if you do nothing your child won’t die.

But life doesn’t always consist of doing nothing in order to survive. Sometimes doing nothing can kill you, or your child. Or leave you horribly maimed, maybe physically, intellectually, or emotionally. The fact is that there is a very good chance that your child may need to go to hospital. And what do you know about that place, apart from what the square box in the living room tells you.

Let take a little sight-seeing flight, shall we?

‘ "Ladies and gentlemen, welcome aboard Sterling Airline’s Flight Number 743, bound for Edinburgh. This is your captain speaking. Our flight time will be two hours, and I am pleased to report both that you have a 97% chance of reaching your destination without being significantly injured during the flight and that our chances of making a serious error during the flight, whether you are injured or not, is only 6.7%. Please fasten your seatbelts, and enjoy the flight. The weather in Edinburgh is sunny."

Would you stay aboard? We doubt it.’

BMJ Volume 319, 17 July 1999.

The first reference to MEDICAL ERRORS in WAVES was in Vol. 8, No. 3, (February – March 1986) in an article called ‘In Defence of a Personal Opinion.’

The article came about because of several "attacks" on parent’s right to chose blood products, cancer treatment, and immunisation to name a few. About that time, the Herald had pointed out (26/6/95, A20), that in this country, every year, around 2500 people die, and 5000 cases of preventable injury occur in New Zealand hospitals from preventable errors. Again on September 15, 1995, A4, a leaked Health Ministry report proclaimed that as many as one in 20 hospital patients may be harmed and one in 200 will die because of accidents in the health care services.

For a considerable length of time, the medical response was… dead silence. This seems to be the way they deal with anything with a grain of truth in it. If you ignore it, it might go away.

Then suddenly early 1999, the Herald announced that Professor Peter Davis (Helen Clark’s husband) was heading a $1.23 million study, reviewing 6000 patient files for evidence of injury and death through hospital mishaps. At last, it seems that the issue might be taken more seriously. Since then, there has been a steady stream of case histories in various newspapers, of New Zealanders whose lives were ruined through being on the wrong end of the medical system.

On May 18th this year, Dwayne Crombie wrote an article in the Herald (A17) directly relating to medical errors in which he said that "quality assurance safeguards were driven not by a desire to protect health professionals but to get at all the facts." He detailed some of the articles in the British Medical Journal, where two approached were described. These are worth repeating:

  1. The first is the person approach, which sees error as resulting from aberrant human actions, such as carelessness, negligence or inattention.
  2. The second is the systems approach, in which humans are regarded as fallible and errors occur even in the best organisations. It concentrates on the conditions under which individuals work, and tries to build defences to avert errors or mitigate their impact.

Dwayne Crombie quotes Professor Lucian Leape and Donald Berwick saying:

"But today’s culture of blame and guilt often shackles us. Achieving the culture of learning, trust, curiosity, systems thinking and executive responsibility will be immensely difficult in the spotlight of a newly aroused public and media."

Dwayne Crombie goes on to say that he believes that as much information as possible should be publicly available, but that this requires a far more open and non-judgmental environment in which to address the safety of our patients and clients, an environment in which health professionals trust their community enough to discuss their short-comings, limitations, and make a commitment to continuously improve their care.

He then says:

"It is also an environment in which the media, politicians and the community use the information maturely and jointly accept responsibility for resolving the system problems identified, rather than satisfying their desire to blame and punish."

Jointly? How does he figure this? Surely it’s not my fault if a surgeon leaves an implement inside me?

What happens when a person picks up a vial and kills the patient because they didn’t check the label? Is that a "joint responsibility" error? Has it made that staff member any more accountable for their actions? Why should the unconscious or conscious patient accept any responsibility for this? What has the community got to do with human error?

Do you think you would ever hear of someone getting off on murder for impulsively using a gun that someone else left where it shouldn’t have been?

With regard to the method of treatment, most doctors think that they have a monopoly on rightness. If a patient, or parent, decides that what the doctor has to offer is wrong for them, all hell breaks loose. Do I have to mention Liam? The medical profession’s response to this is ‘The Law’ – to grasp, to control, to enforce their view of rightness. The question that arises in my mind is whether or not the people who run this incredibly error-prone system have the right to demand non-judgmental acceptance from us when in the very next breath they can be so righteous and judgmental about our choices as parents.

There seems to me to also be another fundamental flaw in this thinking, in that the law as it stands is geared to individuals being personally accountable for their own actions, something which medical people in their dealings with parents use to the full, without hesitation.

But let’s take it out of the medical scene for a moment, and look at the nature of justice as it stands for citizens. Take the case of Victor Minnell, who was sentenced to 4 years after he hit two boys on a Wanganui bridge, tipping them over the edge. He panicked in his drunken state, fleeing the scene and not telling anyone until the next day. Because the boys died, he was charged with manslaughter and failing to stop.

Under the "systems approach", the principal things looked at could have been the following. Firstly, the boys were not supposed to have been riding across the bridge. Secondly, Victor Minnell had been drinking and was driving home without his glasses, and with lights on dip. Thirdly, even though the impact dented the steel bullbars and smashed a side window, Victor Minnell, who was described as keeping himself to himself and being a loner, panicked. The systems failure approach would probably have centred on the fact that the boys shouldn’t have been there in the first place, the pub’s responsibility to ensure it’s patrons fitness to drive and the psychological condition of a drunken person, and the fragility of their thinking under those circumstances. What steps might be taken to ensure it wouldn’t happen again? Maybe bridge modifications, new responsibilities on pubs, and enforced counselling to cure loners of their unsociable habits and ways of thinking?

Tell that to the families of the two boys. The sentiments expressed at court by the Cutter family were that Minnell should do the right thing and kill himself, and other family members wanted him to be hanged. The reality is that in court today, each individual is considered accountable for his actions. And the fact is that where a mistake is made by a human being, regardless of the circumstances, "system’s failure" comes across as a very lame dog.

Dwayne Crombie makes a very dubious assertion early on in his article. He states that:

"A fundamental tenet of our justice system is that people are entitled to a fair and objective hearing."

I have now been involved in enough court cases to know that this concept is highly erratic. Law is not always ‘an unending search for justice’. In fact, talk to some lawyers and they will substitute the word "seldom" for "not always". The law can often be a game in which he who has the most money, the most clout, and plays the persuasion game most convincingly, will win. And justice has nothing to do with it at all. Especially when it comes to medical matters.

Take this example. In England at the moment, there is a man called Professor Sir Roy Meadows. Let’s assume that here, and in England, he is held in high esteem by his peers. Titles impress, especially socially conditioned simple-minded jurors. I say "assume", because I haven’t talked to anyone in New Zealand about him based on the ‘up-until-now-fairly-safe’ assumption that even if they didn’t like him, they wouldn’t say so. To me, Meadows is yet another Botrill, being protected by his peers. Meadows’ self-professed claim to fame is that he invented the term ‘Munchausen’s by proxy’, where a mother uses the imaginary or inflicted injuries of her child to gain constant attention from medical personnel for herself. He has given evidence in about 80 cases where the mother or parents are accused of Shaken Baby Syndrome, and his evidence has put many of them behind bars. He has written a book, but has never had any research published in peer reviewed journals. I am told by lawyers that when challenged on this lack of verifiable scientific evidence, his defence is that it isn’t possible to do peer-review research with controls, because of issues such as "ethics" and "confidentiality". However, his self-professed expertise in court is primarily that in studying all he has done, he knows the criminal mind of such parents.

In a recent court case in England in Sheffield, his evidence convicted a mother to spend the rest of her life in jail. She had twins, both of whom died of cot death. At autopsy, absolutely nothing could be found. There was not one shred of medical evidence whatsoever that this mother killed her babies, but she was sent to jail because the jury, enamoured of this man’s wonderfully charismatic performance in court, and the titles emblazoned after his name, accepted Sir Roy Meadow’s assertion that absence of medical evidence did not matter, because this mother’s behaviour after the babies died was consistent with the way baby-killer’s behave.

So, justice is the unending search for truth, fact, and a fair and objective hearing is it? Because of the ‘fallacy of authority’ involved in this "game", juries can lose sight of the meaning of truth, and fact. And so can the police. The truth can sometimes be obscured by the subconscious need to prove that the primary job of the police, and justification for their pay, is to gather evidence to convict. After all, if you have very few convictions, you’re obviously sitting on your rear-end scratching.

In the last 4 years there have been several English cases where it appears the police have colluded with people such as Professor Sir Roy Meadows. In at least one case, they said that they had incontrovertible proof that the baby had been smothered, and that if the person pleaded guilty, they would get off with a light sentence, but if the person continued to maintain their innocence, they would ensure the key was turned for at least 25 years. The person, after 4 days of crying, and believing that there was no way out, pleaded guilty to innocence. After the case had finished, someone with expertise in the forensic side of things, demanded to see this incontrovertible evidence. The relevant slides etc were finally handed over, in which there was absolutely no sign of the said "incontrovertible evidence".

As parents who choose not to immunise, it is a good idea to have a solid understanding of exactly what we are talking about when discussing medical errors, and what Dwayne Crombie means when he says he wants medical errors to come under the "systems failure" way of thinking.

Exactly what types and numbers of medical errors are we looking at in this country?

We really don’t know. The figures mentioned earlier appear to have been projections taken from an Australian report. The real issue is how can we rate New Zealand, and who can we trust in this issue?

The differences of opinion in this issue are well illustrated by the current disagreement between Drs Skegg and Cox and the Health Funding Authority about the conclusions of the Health Funding Authority’s report. The HFA says that all other laboratories reading cervical smears are okay. Dr Skegg maintained that the study was extremely crude and planned on the run. He said that the study had a fundamental weakness in that it looked at smears rather than women, and was not adjusted for age, socio-economic factors or ethnicity and was carried out in an atmosphere of secrecy (Herald, July 25, A3).

The following day in the Herald (A8) Dr Skegg was reported as describing the report as a "fire-fighting exercise dressed up as a rigorous investigation". When HFA lawyer Kim Murray said that Dr Skegg was simply nit-picking and looking for a "gold standard" in terms of research, Dr Skegg’s reply was that the report did not meet minimum research standards because the HFA had collected information and sent out questionnaires to laboratories before drafting the aim of the study. "I’m not arguing for a gold standard. This wouldn’t even get a bronze medal." He also said that the report’s conclusion was at odds with the information in the report, which included recommendations from an expert group that remedial action be taken to address significant problems with several laboratories. The insinuation was then made that Dr Skegg’s motivation for criticism was to garner support for a particular study he wanted to do, but could not at the moment. In other words, because you can’t get what you want, you’ll spit sour grapes. Says something about the lawyer, doesn’t it.

I see it as major progress that someone finally had the guts to stand up in this one case, and say something truthful. But isn’t it a shame that it only happens when someone’s personal ethics are involved? Dr Skegg stood up for the women, for what he perceived as the truth. For once, someone looked behind the statistics, the epidemiology, and at the human cost to the individual of hiding behind the veneer.

Exactly these same comments could be made about the "official" investigations which "proved" that there is no relationship between MMR and autism. Dr Skegg’s description of the HFA’s report, fits Dr Taylor’s MMR/autism firefighting exercise to the last full stop. And I guess he’d be horrified if he knew I had written that, but it’s true.

So how many laboratories in this country make errors? We don’t know, because the medical profession will only admit to the minimum they are forced to. And how long did they defend and protect Botrill? Ten years. Did they confess willingly? No, they were forced, kicking and squealing into the real world. This is the dark side to medical history down throughout the ages.

Before you deal with what the figures are, you have to find out what the overall problems are. That is very difficult, when the reason why the likes of Dwayne Crombie won’t tell you is because he doesn’t trust you with that information. In short, the medical profession could well be scared of being lynched.

The only way we get to know what the problems are, or even could be, is by reading books written by whistle-blowers. Back in 1992, the American Hospital association knew that American hospitals were in deep trouble. Dr Sidney Wolfe, in his doctor’s column in The Washington Post, January 19, 1992, pg. C2 detailed an "Early Warning System Advisory" memo to all CEO’s (which also passed across his desk) to try to prepare them for the fallout from a book called "The Great White Lie: How American’s Hospitals Betray Our Trust and Endanger Our Lives by Walt Bogdanich, (Pub Simon and Schuster). The memo read:

"The book is a well-researched and compellingly written compilation of true stories that show hospitals at their very worse. Murdered patients, drug-pushing doctors, incompetent technicians, venal CEO’s, self-dealing boards… they’re all here, and it’s not a pretty picture."

This memo was written by those in the know. There was no attempt to flick it off, because the fact is, the book tells the truth.

This doctor then details that according to the author, medicine’s great white lie is the myth that all hospitals and doctors are equally good and deserving of our complete unquestioning trust. He contends that the medical community knows whom the good and bad providers are but chooses not to share this information with the public and as a result, to use Walt’s words:

"hospital care remains a crapshoot for most American families."

The memo is most interesting, because despite listing some of the findings of the book, it urges the hospitals not to be "defensive" about the book. More specifically, it advises:

"Don’t feel you have to defend the hospital field; refer calls from reporters seeking a general response to the book to AHA media relations."

Worse still, the memo goes on to advocate that if they have to reply to questions, the best way is to say that the examples in the book should be put alongside the approximately 30 million hospital admissions every year, implying that the isolated instances are not only taken out of context, but also minuscule in the context of the total numbers. Fine, except at that time, the hundreds of thousand of people they injured or killed every year, had not been admitted to, let along published in the stats.

Dr Wolfe goes on, and lists some of the problems hospitals had:

56 percent did not adequately monitor and evaluate the quality of care given by the medical staff 40 percent had deficiencies concerning safety standards.

What’s worse, if you wanted to find out if your hospital was worth going to, you couldn’t.

What was interesting about this issue was that Dr Wolfe discusses Dr Dennis O’Leary, who, when questioned by the American Medical News said that "public dissemination of hospital-specific data is premature and that the media and the public are not equipped to use it responsibly" echoing this same memo, which said:

"Let the public know that your hospital welcomes public scrutiny of its performance, but remind questioners that most quality related information is not yet available in a format that is useful to consumers." Sounds a bit like Dr Crombie, doesn’t it. You can’t trust the public.

So what are the preventable errors made in New Zealand hospitals, and what are the figures for medical error across the whole medical profession in New Zealand?

No-one knows. On 2 May 2000, the Annals of Internal Medicine, pg. 763 quotes American statistics from Dr Leape in the Quality Review Bulletin 1993;19:144-9:

We can assume these figures are correctly quoted– but we can also assume these figures are an underestimate, because Dr Leape stated in JAMA July 5, 2000 that in one of the studies used by the Institute of Medicine:

‘an additional 6% of hospital-caused adverse events were discovered after discharge, but were excluded from the analysis because they were an unknown fraction of all such events. Therefore, any record-review study produces at best a "lower bound."

And secondly that:

"neither of the large studies examined the extent of injuries that occur outside of the hospital. More than half of surgical procedures (numbering now in the tens of millions) take place outside of a hospital setting, and the adverse event rates for these procedures have not been studied."

And thirdly that:

"when prospective detailed studies are performed error and injury rates are almost invariably much higher than indicated by the large record-review studies."

Dr Leape goes on to quote the following:

Dr Leape goes on to say that:

"these data are strong evidence that record-review studies seriously underestimate the extent of medical injury."

This is confirmed in the latest study (JAMA July 26 2000 Vol. 284 No. 4 pg. 483-5) which listed 225,000 deaths per year from iatrogenic causes – the third leading cause of deaths in the United States after heart disease and cancer.

A study was also quoted which shows that "between 4% to 18% of consecutive patients experienced adverse effects in outpatient settings, with 116 million extra physician visits, 77 million extra prescriptions, 17 million emergency department visits, 8 million hospitalisations, 3 million long-term admissions, 199,000 additional deaths and $77 billion in extra costs (equivalent to the aggregate cost of care of patients with diabetes)." My, how the numbers are rising!

Ironic then, that this expensive $1.23 million New Zealand study is a record review study, which will seriously underestimate the extent of medical injury.

Another question about the American statistics arises. Do these figures include the following published in JAMA in 1998?

If not, that makes an even more staggering total. And what about infections? Are they considered? Here from the Times, February 17, 2000 by Ian Murray, Medical Correspondent states the cost to the UK:

"Dirty hands and unsanitary conditions in hospitals cause 5,000 deaths a year and are partly responsible for up to 15,000 others….Another 100,000 inpatients become seriously ill with infections, costing the NHS at least 1Billion a year to treat."

Dr Leape concludes in JAMA, July, 200 by saying that:

"Errors and "excess" mortality can be eliminated but only if concern and attention is shifted away from individuals and toward the error-prone systems in which clinicians work…. Physicians should embrace this message with enthusiasm and vigor."

Which Dr Crombie is doing. If you de-humanise the system, and make everything system’s error, and get everyone used to the idea – just maybe you can start talking about some problems without being garrotted.

But I have a problem with this. Everyone talks about error-prone systems, and "systems failure". The fact is that humans are error-prone by nature. How many of you saw the little exercise on Holmes show this week where they set up a mock attack in Aotea square, where a bag was snatched. They interviewed the "witnesses" on the day, and two days later. Quite a few of the stories had changed, and it proved that people’s recollections can not be trusted. Can a doctor’s recollection be trusted any more than that of a patient, or a parent? I would say less, because doctors are scrolling through many cases every day. To the one person, the precise indelible event happens, unclouded by all the surrounding additional work-load which doctors must contend with.

So often in the review process of what might have gone wrong, it comes down to the word of a doctor against the word of a parent. And who is generally most believed? The doctor of course. The fallacy of authority comes in here because the doctor has more credibility. There is another problem in medical cases, and that is that so often, relevant facts are simply not written in the records, and so events which happen can become a memory versus memory issue. Who is right? Only God knows.

How does this related to parents who don’t immunise? We would like to think that we, or our children, would never end up in hospital. The reality is that life might not work out like that. The question is, just what do you need to know to survive?

There are many books on the market about this issue. One is called How to Get Out of the Hospital Alive. It is written by Professor Sheldon Paul Blau, clinical professor of medicine at Sunny Stony Brook, and details his experience of how he survived just about every mistake in the book you could think of. He survived BECAUSE he was a doctor, and his wife was a doctor, and they KNEW what to do when things went wrong. You don’t have the benefit of insider trading! Sheldon Blau tells you how to avoid the common catastrophes that abound in hospital. The problem is that his solutions will NEVER endear you to the system. His recommendations include such things as tape recording all conversations with specialists, and going over them later –having full knowledge of what is going on, the whys and wherefores of your medication, and what the doses are. In short, you, the patient, keep detailed notes of

E-V-E-R-Y-T-H-I-N-G.

I bought this book earlier this year off the web-siteAmazon.com which I noticed also had an array of other books on the topic, the next two on the list being:

  1. Take This Book to the Hospital With You: A Consumer Guide to Surviving Your Hospital Stay, by Charles B. Inlander.
  2. The Intelligent Patient’s Guide to the Doctor-Patient Relationship; Learning how to Talk So Your Doctor Will Listen by Barbara M. Korsch, Caroline Harding.

Tell me. Why should WE learn HOW to talk so that DOCTORS WILL LISTEN?

I found Sheldon Blau’s book pretty basic, but no doubt it would be a major revelation to some. The thing that was interesting to me was that a doctor was suggesting many of the very things I had done in 1999 when our elder son had a week in hospital. I didn’t have the courage to tape record all conversations with the specialists, but I had an exercise book from the start, and filled in everything that happened, the minute it happened. That way it stayed fresh, accurate, detailed – and not subject to the errative whims of the ever changing memories of the unpredictable, inaccurate witness. Had I not done this, I would never have been able to challenge many of the inaccuracies which later filled his records.

I also asked every question I could think of with any bearing on the issue, and had the gall to suggest that I knew what the problem was, and suggest the test which I wanted them to do. Not that I was listened to of course, after all, which medical school did I go to. (the one called the school of hard knocks actually) And where I was not sure on my accuracy, I checked the medical literature or got one of the doctors concerned to read what I had written to make sure I had correctly written it out in the exercise book.

And I can tell you one simple thing which will not come as a surprise. It is not the way to make friends or influence people. It will guarantee that the hospital’s principal agenda may well be to have you removed from the hospital for as long a period each day as they can get away with.

The key is that you must know what your rights are, and more importantly – you as a parent have the right to know exactly what is wrong with your child, what the intentions of the medical profession are, what they would expect their intervention to achieve, and how they would go about it. You also have the right to know what could go wrong.

As Walt Bogdanich puts it in his closing section if his book:

"consumers should realise that while it may be easy and

reassuring to believe that most hospitals and doctors are

equally good, it is also foolish and dangerous. The mystique of infallibility from which doctors and hospitals benefit so greatly has survived too long, at the expense of patient care. Consumers should not be afraid to pointedly probe the backgrounds of their physicians and hospitals, including their financial relationships."

But we are afraid. Because much though we would like to be treated as intelligent people with brains, and with a right to have a major say in whether that intervention should go ahead, as of July 2000, New Zealand doctors don’t see it that way. I believe that If you have any questions, some suggestions, or even modifications to that proposed for you, or your child, you should be treated as a thinking intelligent person with the immutable right to have input into your, or your child’s condition.

AND THAT SHOULD BE ENSHRINED IN LAW.

You also have the right to be told the truth, and nothing but the truth with regard to what the problem is.

And whether the medical people like it or not, in an environment where they presently strive to finish morning rounds with a flick of the fingers by TELLING the patient the single next step and moving to the next bed before you can breathe; if everyone did this, they would have to add another two hours at least on to morning rounds. The problem is that hospitals in this country at least, perceive everything that Walt Bogdanich, or this clinical professor of medicine, Dr Sheldon Blau suggests, as a threat. A big threat. To their integrity, and every other tenet of their practice.

There is yet another problem in all this. Just say a member of your family dies, and you are told why they died. How do you know this is any more correct than the other mistakes they could have made? And unfortunately, when you question every move that is made, doctors feel that you are questioning their ability to diagnose, and accurately tell you what is wrong, which is very insulting to them. But actually, you have every right to do this, and it just might be more important for your skin than you realise.

In a recent study in JAMA, October 14, 1998, 1245-1248, a 10 year retrospective study of all autopsies performed at the Medical Center of Louisiana at New Orleans found that the discord (i.e. the doctor was wrong) between clinical and autopsy diagnoses of malignant neoplasms was 44%. The study reviews previous studies looking at the worth of autopsies which have fallen from 50% in the early 60’s to 10% today, and said this:

"Despite technological advances, the number of inaccurate clinical diagnoses (attributed to both malignancies and all other causes) remains alarmingly high" (my emphasis)

They also recommended that autopsies should become routine because:

"Autopsy diagnoses could allow for correction of death certificates and improve mortality statistics as well as cancer statistics recorded by national tumor registries."

Okay, so now we know that doctors can get it wrong in death, as well as life. Makes sense to me. Does it make sense to you? The problem of course, is that when someone dies, there is a natural abhorrence to chopping that loved one up to find out whether the doctor got it right or not. Somehow, death makes the issue somewhat redundant. Dead is dead.

But more importantly for parents today, how do you know the pathologist will get it right? His work, or lack of (sorry, "system's failure") could put the spotlight right back on you.

Don’t think that discussion about autopsies is irrelevant. It isn’t. Take, for instance, the issue of death by natural causes versus Shaken Baby Syndrome. In this context, medical error and medical ignorance are as good as synonymous, and can have disastrous consequences.

Just say that you have a child you take to hospital with apnoea and cardiac arrest. Blood tests show considerable abnormalities which often for some reason are not able to be explained, or dismissed outright – if you even get to see them, which is unlikely. After all, you will be beside yourself. And would you think to ask? If you did, would they view you as some cold hearted, aberrant fish? Just say the X-rays appear to show a healing fracture to a rib. The attending ambulance medicos, who found no bruises on the body, are ignored, because the attending specialist, 6 hours later finds multiple bruises everywhere. He then thinks he sees retinal haemorrhages. And someone, after viewing a CAT scan pronounces that modern death-sentence to the parents, that there is probably haemorrhage, and diffuse axonal injury in the brain.

Suddenly the scenario changes, and you the parents are viewed as the main suspects, the police are brought in, and --- here can be a huge problem. Someone has already decided you did it. And they are, of course, infallible. And never make mistakes. Do they.

After discussion amongst the doctors, and often the police, an abbreviated autopsy is conducted, not with the view to eliminating every other possible scenario first, but solely with the aim or proving what the attending doctor believes – that a parent killed the baby. But you don’t know this, because what average parent knows the protocols for autopsy, or that a full autopsy takes time, considerable effort, and the turning over every stone. And

you don’t know that in your case, a full autopsy has been considered quite unnecessary, because the doctor THINKS he is infallible – he is right.

So, your case goes to court. Who would think to question an autopsy? Every juror, who implicitly trusts the medical system, would assume that every stone was turned over. And you, the parent, didn’t ask any questions, because you were distraught, and didn’t think of anything other than your sick child. Suddenly, you are in jail. And presumed guilty. As a child-murderer you are the scum of the scum, and well knocked up within a week.

So you decide to appeal. And some bright spark lawyer says, well, let’s look at the autopsy. And what do you find? Not only was just about every protocol in the book broken, but that the pathologist actually didn’t have too much of a clue what he was doing. Maybe the spine was removed incorrectly. Maybe the shearing injury described in such detail in court was actually caused by the pathologist. And because there was no MRI to differentiate between real shearing injury, and the very real shearing injury that can occur when the pathologist takes the brain out, the parents took the rap.

No-one considered that the bruises which the paramedics clearly wrote that they could not see, might have resulted from the frenetic attempts by the hospital staff to resuscitate the baby. And when your lawyers then question the haematologists about the significance of what looks like disseminated vascular coagulation throughout the body, and the coagulation tests, you find that, well, actually, the coagulation process isn’t understood very well. And it’s seen in most SIDS babies anyway. And the DIMER test which is so high?… actually they don’t really know what that means. So you go through the other abnormal tests, and the excuses come thick and fast, like… well, in babies there can be such variation – this could actually be normal. Or, well this could be because he was dead on arrival. Or, well this could be this, or this, or this. In fact, you’re left thinking that given all the ambiguities thrown in to explain why abnormal is suddenly normal, that maybe these tests are simply done to look good, fill up space, waste paper, prove they are doing something to earn their money, even if they don’t know what!!

And I’m talking in jargon, to give you a minuscule idea of the vastness of the traps that you, the ignorant and possibly innocent parent just might become enmeshed in.

How would you feel, if this was you?

I can tell you right now, it is a scenario which many parents find themselves in throughout the world. Because they believed that doctors knew what they were doing. Don’t get me wrong. I have no doubt there are some people who murder children. No doubt at all.

The cornerstone of medicine is trust, accuracy in diagnosis, and the unbiased search for the "cause", the medical truth so to speak. It is a version of legal

justice if you like, because your very life could depend on the rightness of that doctor’s mind, be it a broken leg, a gastrointestinal bleed, or a baby that suddenly dies.

You, the parent, are at the mercy of this system, and if this system considers itself above you, above the principles of natural justice, and a law unto itself, you the parents are the ones who are going to suffer. And because most people still believe the Great White Lie, you will find it almost impossible to get justice through a court of law, because the prosecution will also make sure that the jury is stacked with people who believe the Great White Lie implicitly……

So far, we have got the medical system in this country we deserve, because we have allowed the development of a system that has had no accountability in the past, and appears to want to duck the issues by classifying its own mistakes as "system’s failure". As ever, its aim is self-preservation with as little disruption as possible.

The problem is that if you are the parents of an incorrectly diagnosed SHAKEN BABY, this little "system’s failure" could land you up in jail. And the doctors/pathologists, whose presumption that they knew it all put you there, are guaranteed total immunity, should their errors…. oops "systems failure" be found out later on.

So this little thing called an autopsy becomes absolutely critical in this case. Because it is not the function of an autopsy to imply guilt or innocence, but merely to detail all facts, and nothing but facts, including extensive virology, bacteriology, toxicology and painstaking microscopic examination of every bruise, haematoma, anomaly and body organ in your baby.

But the principal reason that accurate autopsies are so critical to any death from whatever cause is because, as said in the Sunday Star Times, September 27, 1998 C9:

"Many scientific ‘breakthroughs’ are nothing but mirages based on flawed research."

"How could this be?" says the reader. There are all these incontrovertible studies that show indisputable statistical values. You know. The chances are greater for you to die if you do this, rather than this. The chances are greater than what? The P value, of course. Open up any medical journal and you will see the phrase "P<0.05" from studies varying from hell to breakfast. The man who "discovered" this figure was Dr Ronald Aylmer Fisher who published a book, Statistical Methods for Research Workers in 1925 which promptly became the bible of statistical manipulation. The trouble was that Dr Fisher had no scientific evidence to show that his figure of 0.05 was a safe point at which to declare any result "significant". He simply chose the figure, he said, because it was "convenient". Just as ‘Diffuse Axonal Injury’ is the new landmark shaken baby sign (in spite of there being considerable debate over the issue) because it is a convenient, simple solution.

But the implications of 75 years worth of shonky statistics are enormous, because it means that everything using this formula has been decided using an entirely arbitrary standard.

By 1960 University of Michigan statisticians including Professor Lenard Savage were warning that P-values were "startlingly prone" to attribute significance to fluke results. During the ‘80’s, Professor James Berger of Purdue University tried to alert researchers to the "astonishing" tendency of the standard statistical tests to mislead.

And in the year 2000, the scientific community has no intention of taking decisive action to tackle the critical flaws in significance testing, because as the Sunday Star times clearly stated:

"Taking action would mean "radical re-training." And

"It is simply that if scientists abandoned significance tests like P-values, many of their claims would be seen for what they really are: meaningless aberrations on which taxpayer money should never have been spent."

Does it seem like we have wandered miles from the original subject? If so, let’s clarify the issues here.

As the Gisborne cancer enquiry has shown, there is science, and there is science. There are mistakes, and possibly more mistakes, depending on whom you listen to. And as previous articles written by me having pointed out from the BMJ, only 1% of medical articles are scientifically sound. (BMJ 5 October 1991)

As the Herald has stated 31 August, 1995, Sect One, pg19:

"Medical ignorance is rife among doctors and the sooner they realise that the better." (Professor Ann Kerwin of University of Arizona)

And, Saturday September 9,1995 Section Eight, Pg. 5:

"I have seen too many phases of medicine where

ephemeral fact has been used to preach a gospel that is later proved wrong" (Dr John Scott, Middlemore hospital)

Studies have been published with amazing conclusions which could have been simply quite wrong. Like the one done by a research team from an eminent medical college who did IQ tests on 100 prison inmates and compared their results with a matched group of men and women randomly culled from their community. The results were uniform and quite dramatic. The prisoners scored an average of 70, the control group an average of 110. After running these results through all the variables, co-efficients, biases and blah-de-blahs, the medical institution came to the conclusion that criminals were indisputably dumber than the rest of society.

Or, as pointed out by the criticiser of this study, maybe it’s only the dumb ones who got caught. (Maryland Medical Journal, May 1994, pg. 426) and as I said in the previous WAVES, the brighter the person (researcher in this case), sometimes the more ludicrous the explanation.

We like to think, as parents, that medical people are there because they care about us, our children. We like to think that they are honest, and that the research they are basing their thinking on is honest, accurate and without bias. And that if we take a study to someone else to evaluate, that they might also know what is right, and what is wrong.

Unfortunately, it just isn’t so. Time and time again, articles appear which detail scientific misconduct of supposedly reputable researchers. I have so many of them now from Calcium channel Antagonists, to the British Vitamin B6 guidelines (which prompted one medico to write that the politicians seems to be unaware of the fact that their "expert advisers are operating far from the ethical standards they imagine".- BMJ 13 Feb 1999 pg. 464), it just sickens me to look at them.

This business of second opinions, or peer review, is very important. So you should know about the study done which gave the peer reviewers studies which had 8 deliberate basic errors in them. None of the reviewers caught all errors, and few caught more than 2 or three. The conclusion of which was that:

"The quality of peer review is lamentably bad." (JAMA Nov 5, 1997 pg. 1391)

I’m sure you have the message by now. The fact is that we all may need to go to hospital some time. We all may need to have our children treated there. There are good doctors, and bad doctors, and you’re not going to know which is which. There are right diagnoses, and wrong diagnoses, and you’re not going to know which is which. There are correct procedures for complaints, and ways to do things which even so just might press the staff nurse’s button labelled "eject this parent".

Are you going to wait until the day something happens to think about what you might do?

In the interests of informed choice, and participatory medicine, I have some suggestions to make.

RULE NUMBER ONE:

HOW TO BECOME PREPARED:

informed on all those things that just might affect you as a parent. Start with the issue of what constitutes informed consent. Then look at all the infectious diseases. If you have a family history of allergies to drugs, swot up on that. Somewhere in that, fit in the issue of blood products, and make sure you understand the international protocols of the various scenarios, and the possible side-effects. We were very grateful that I had done that research just 6 months before our son decided to bleed himself to a critical condition. To have done it at the time would have been impossible, and too stressful. Just knowing what I knew actually eliminated a lot of the emotional fear of the unknown out of my head, and got rid of some feelings of helplessness that so often accompanies emergencies. It also enabled me to intervene, and stop extra blood being given when it was actually contra-indicated.

But the situation is quite different to that of making decisions for a minor (or even a husband/wife/son/daughter who is not able to speak for themselves). I have great admiration for Liam’s parents, who took the time to research and investigate the claims made by the doctors and found them severely wanting, then on the basis of their convictions, plotted the course of action which they considered the best, and safest for their son. The last television programme which included the American parent, whose wife was an oncology nurse, and who showed from the textbooks that parents were never told the truth, was really revealing.

The problem is that medical people believe that in the issue of minors, their "degree" entitles them to pull rank on you the parent. And most parents let them.

The reality is that these same people who like to pull rank cause more deaths in USA every year than the combined number of deaths and injuries from motor and air crashes, suicides, falls, poisonings and drownings. (BMJ Vol. 320 pg. 759, 18 March 2000). Under such circumstances, why is it that they consider their ability to make a correct decision better than that of a parent, whose biggest concern is the safety and welfare of themselves or their children?

Unfortunately they do, so the reality is that possible scenarios should be discussed openly in families, with questions like "What do you want me to do if I am in X situation and I have to speak for you?"

And even then, while you may try to do your best, and be as well informed and politely assertive as you know how, do not, for one moment, think that even this will save you from being run-over by the system. The system is designed to protect itself, not you. For all the assertiveness training I had had, and the knowledge I had, the prescribed protocols won out, and left me feeling very frustrated, even when at the end, it appeared that I was probably right, and the test I asked for on admission was the one which would have found the problem. Having said that, it could be that God felt that it was better the hospital did not find out. Who knows what sort of mess they would have then made with their ideas on how to fix it?!

BUT… The advantage I did have was that knowledge that enabled me to know when to fight to the limit and not back down. On that occasion I knew at what point it would be "over my dead body". The secret is not to know how to fight, but to know when to fight, and what to do if you don’t get what you want. And to hope that you know enough for whatever the situation is. Don’t knock it. Whatever littleyou know is better than nothing. The very least you must know is how the system works.

Knowledge is more than power. It can remove a lot of fear as well. Sure, there can be additional fear, if you know what can go wrong, but I’d rather know the reds of the bull’s eyes and face it full on, than turn, run, and be gored up the backside when I least expect it. If that’s not you, fine. If you find yourself saying to the above suggestions – oh, its all too much, and take a whiff of the smelling salts as you faint right away,…..fine. That’s also your choice.

But before you do, consider this little item from USA Today, October 10, 1997:

"Almost half of the Americans polled say they’ve been in a situation where a medical mistake such as a misdiagnosis was made. A Harris poll taken for the AMA’s National Patient Safety Foundation shows that 42 percent say they, or a friend or relative has been involved in a medical mistake, 40 percent were affected by misdiagnoses or wrong treatments, 28 percent were affected by medication errors and 22 percent experienced mistakes during a medical procedure. More than half the respondents blame medical errors on carelessness, improper training or poor communication."

Yes, it’s easier just to "trust them". That’s what they want you to do. But is there not enough written, enough evidence to prove to you that that ignorance is no excuse? That your ignorance may have as much to do with a medical error, as the medical profession itself?

You might be sitting there right now, feeling totally inadequate. There was a day when I remember feeling like that too. And my husband. We thought we knew enough. We though we could always trust the system. We paid a steep emotional price for that. But decided right then, that we were going to learn how to get the best out of the system, yet protect ourselves and our children from the worst if at all possible. And if not possible we could only pray like mad. But if you choose not to participate in life and death deals, there just might come a time when it is too late to moan about the fact that you did not prepare yourself as best as you knew how.

A recent BMJ editorial of about 1,000 words started off saying: "In the time it will take you to read this editorial, eight patients will be injured, and one will die, from preventable medical errors"

This article is 9,622 words. In the time it has taken you to read this,

at least 76 people have been injured,

and 9 have died

FROM PREVENTABLE MEDICAL ERRORS.

Made not by systems, but by people who said "Trust us, we know what we are doing."

Your scenic flight has now landed, and you may now enter the gate labelled real life, and consider your options. Choose well. It might be the difference between life and death – for someone.

 As a follow-onto the above, the New Zealand Pharmacy Journal, August 2000, published an article titled "Risky Business" by Brian Ellis, clinical practice group manager Radiology & Therapeutics HealthCare Otago. The thrust of Ellis’ article is about medication errors in hospital. He quotes a report released in 1999 by the Institute of Medicine in the US called "To err is human: Building a safer health system". This report estimated that up to 98,000 Americans die each year as a result of preventable medical errors, that preventable adverse medical events cost between $US17 billion and $US29 billion annually and that medication errors account for more than 7,000 deaths annually.

According to Ellis, medication errors occur frequently in hospital. He reports on a study conducted at two US teaching hospitals which found that about two out of every hundred medicine administrations produced a preventable adverse event. This meant an average increase in hospital costs of $US4,700 per admission or $US2.8 million annually for a 700-bed teaching hospital.

In Ellis’ opinion, the true incidence of errors in health care is probably higher than that found in the literature, and that this is due, among other things, to a reluctance amongst staff to report errors. Brian Ellis has obviously been to the same ‘school’ as Dwayne Crombie as he states "The goal should be to develop a culture within the organisation that values safety and concentrates on identifying the problem and not apportioning blame. Systems such as "no fault" reporting can assist towards this."

He favours an approach such as that used in the US, where the Medication Errors Reporting Programme, a nation-wide service to collect information about medication errors, is up and running. Pharmacists, doctors and nurses can use the service to anonymously share information about medication errors, through a 24-hour toll-free telephone line, or by writing in.

There were 11 common errors in medication prescription: ambiguous strength on labels, drug names that look and sound alike, equipment failure, illegible handwriting, inaccurate dose calculation, inappropriate abbreviations, labelling errors, medication unavailable, excessive workload, lapses in performance and inadequately trained personnel.

Ellis closes his article with a very pertinent comment: "…medication error has been recognised for a long time and while many pharmacists have tackled it individually it is still with us. There is no reason to assume that in New Zealand the rate or type of error is any different than the US. The problem of medication errors has been highlighted as part of a broader concern of error in medical care." [Emphasis mine]

 [Vaccination]  [Hilary Butler]