Your health, your body — your right, your choice
How to get the health care that is best for you
“It’s a funny thing about life; if you refuse to accept anything but the best, you very often get it.” — W. Somerset Maugham, The Treasure
Published 20 January 2012. Last update 5 January 2016
I would like to warn every reader straight away that this article is intended for the people who can and want to play the key role in their own health and health care. It is for those who are open to questioning the current position in which patient’s privacy, benefits and involvement in own heath care are put by the Australian medical establishment.
If you are absolutely happy with the health service you are getting, totally trust every doctor’s decision, are not willing to question any medical treatment, assess your risks/benefits balance, or better understand your condition, and you believe that the medical system always acts in your best interests, then you are either a very lucky person or ignorance is indeed bliss.
The title of this article has emphasis on the word you, and the article is all about you, me, and every other person as an autonomous, mature, sound-minded individual, with a clear distinction between the common and the personal good. A lot on this page may apply to many other aspects of our life, but I take the health care system as the most vital and, often literally, painful example.
The long story short, in pictures
The patient is there to supply their private and sensitive information and their body to the System. After that, the patient has no control over what’s going on. The patient has little feedback about their health from the System, and is hardly involved in the decision-making process during their treatment. This is also an illustration of “privacy” in medical settings: the patient has less access to their own health information than anyone else in the System and beyond. The patient has no control over how and to whom their medical and personal information is disclosed, where it is stored and for what purpose it is used.
(The picture is derived from a slide of the Australian Healthcare Identifiers Service presentation)
The System should put the patient in the centre: patients are the sole reason why the System exists at all. The medical system should be based on the acknowledgement that the patients should be given an option to be in total control of their medical information, privacy and confidentiality, and they must be given an option to seek medical care anonymously. Until then, while the patients are regarded as ignorant objects who have no idea what they want and what is better for them, all those “awareness programs” and researches on why the patients don’t trust their doctors, withhold information on medical appointments, turn to alternative medicine, avoid check-ups, delay with visiting doctors when they are ill and don’t want to participate in screenings — are a waste of taxpayers money. People do not want to delegate their privacy, health and lives to a System that is infested with superiority and paternalism. Only when the System becomes transparent, friendly, and gives the patients the power to decide and control what is happening to their personal information, privacy, health and lives, it will earn the people’s trust and openness in return.
The formal medical knowledge may be useless or even harmful
There are two types of people. The people from the individual point of view: we see them in ourselves, our friends, colleagues and the loved ones — all are different, all with their quirks and virtues, joys and problems. And there are people from the point of view of the System: they look like numbers, all same, counted and statistically averaged.
There are also the health of the population, and the medical rules, procedures, recommendations, schedules, frameworks and guidelines that the System created for the health of the population. And these have little use for the health of each individual.
Everyone is a whole individual and, at the same time, 0.00000005th of the 20-million Australian population.
What is the problem? The problem is that, to minimise expenses and streamline the medical industry, the rules, procedures, recommendations, schedules, frameworks and guidelines are created for “statistically average” people. Each statistically average person has every property, risk, disease, condition, amount of children and life span equal to the calculated average for the given population. These people have never been born and exist only in theory. Nobody in reality has 1.8 children or 0.48% of cancer, yet on paper we all do.
So, there is the health of the population and the health of individual. They are very different, but the System cares about the population, because it has neither resources nor desire to care about each individual. The doctors are trained, controlled, employed, paid and protected by the System; they are also punished by the System if something goes wrong while they weren’t doing what the System wanted them to do. Doctors have to treat their patients as the System knows best: as a statistically averaged mass. Even if you have been seeing the same doctors for years and they know that you are different from the average, the solution for every new health problem, by default, starts on the path of the System’s guidelines. It is legally safer for the doctor if something goes pear-shaped. But it also means that, if you don’t step in, all the health care service you receive during your life will be perfect for you only by 0.000005%, if we speak the language of statistics and probability the System likes so much. The System knows what is good for a statistically averaged mass, but it has no idea what is good for you. Nevertheless, conventional medicine prefers looking at data rather than real people.
Unless you are rich enough to have a dedicated personal doctor, no doctor has enough time to thoroughly investigate all aspects of every condition of your health. Doctors don’t have time to treat patients like individuals so they are just assume that everyone has the same risk factors, and make the recommendations accordingly. The only two ways to personalise the recommendations are either to perform a long, costly investigation of every detail of the patient’s complaints, or to tell the patient the true facts and let them to make their own conclusions. The later is rarely done because, the all-knowing paternalising System prefers the patients to make no decisions of their own.
Also, not every doctor has enough courage or experience to adjust the System rules for every case. If the doctors can’t or won’t do it, there is only one option: it have to be the patients. Doctors may spend 30 minutes with each patient, but the patients spend every second of their lives with themselves. Only the patient knows exactly how they feel, what has changed, when something happened, what other feelings and sensations are connected to the condition. Only the patients can observe and assess their health on everyday basis through their whole life. Only the patients can show the doctors how different they are to that “average” for which every treatment or screening is recommended, and save themselves from misdiagnosis, over-treatment or under-treatment. But it can only happen on two conditions:
1. The patients must be given honest and full information about every condition, procedure, treatment and option they have.
2. The questions, opinions and decisions of the patients should be taken seriously by their doctors.
There shouldn’t be any place for withholding information from the patients, incomplete truth told by doctors, skewed facts or scaremongering to push anyone into any screening or treatment.
To screen or not to screen: make sure there are real benefits for you
The patients should be aware that screening may do nothing but advance the diagnosis, i.e. benefits from any screening and early detection for health outcome may be nothing more than the lead time bias — the apparent improvement in survival that is seen when screening advances the time of diagnosis without any change in the actual time of death. In this case, increased survival time merely reflects a greater period of time that the individual is aware of the presence of cancer. In other words, screening may not prolong life, only prolong the anxiety and suffering.
Dr. Gilbert Welch defined cancer screening as a systematic search for cancer in people who have no symptoms or signs of cancer, and the vast majority of whom will not have the cancer being sought.
To encourage healthy individuals to participate in screening and medical surveillance, the System needs to heighten their sense of cancer risk. The language often used is “we need to raise the awareness”, the meaning of which is “we need to introduce a dis-ease” or raise the levels of fear of the cancer in question.
Any cancer screening programme must involve many to potentially benefit a few. The harms of screening (worry, fear, false positives, overdiagnosis and overtreatment) are more certain than its benefits. This is why screening must be a personal choice, not a public health imperative.
Unfortunately, very often the patients don’t receive comprehensive information about the risks of screening. Instead, they are given glossy brochures with photos of smiling faces and ad-like pitch of “life-saving” screening tests. Those brochures are put together to make everyone to obey the System, not to inform, give a choice or offer options; the patients are told rather than offered. This is an unethical and harmful approach.
The basic idea of screening is to look hard for things to be wrong, while keeping track of people who would not othervise be under the System’s watchful eye. But our health is not just the absence of any abnormality or deviation from a medical norm. It is also a state of mind, and we have to be very careful not to disturb that.
Don’t answer the questions you don’t like
The process of relying on the information gathered from the patients is not flawless either. Very personal questions are asked, presumptions are made, while no explanations are given why the doctor needs this information.
For example, the usual question on medical forms: what’s your marital status? First, it is irrelevant if it has no impact on your health care, or discriminating if it has. Then, whatever your answer is, the doctor is likely to make some hidden medical assumptions, which may be absolutely incorrect in your case; but you won’t know about the assumptions, and, therefore, can’t intervene, correct, explain or protect yourself from mislabeling. The point is that even if there are some real connections between health and marriage, a much better way to figure out the health-relevant side of the question is to ask the health-related questions directly, and only in connection with whatever health problem the patients are seeking an advice about, rather than assuming that they are at risk of developing certain conditions because of their marital status. Why isn’t is done that way? The medical profession thinks it knows better and wants to be quick.
What is your occupation? Again, a pile of presumptions. Even though, the occupation title doesn’t always describe the exact environment you are working in, the nature of your work or its health implications.
Let alone the aspects like your ethnic origin, sexual preferences and so on. What if, for example, the country of your birth does not reflect your genetic make-up or your upbringing? What if your parents were foreigners in the country you were born in and moved to another country soon after your birth? The System won’t say “We are looking for these and those risks, which could arise if and when... Can you think if you may have any?” The System demands to know the country of your birth, and will make a bunch of presumptions about common illnesses from that country you may have. And then, if you have some similar symptoms one day, the doctors will be looking in the wrong place, losing precious time and endangering your health.
Instead of giving the patients the reasons for such interrogations and letting them to decide whether it is relevant, the information is just gathered, used and misused at the System’s discretion. The System doesn’t have time or resources to consider and investigate everything, but, sadly, it won’t let the patients to do it either. That is why it is very important to ask why they need certain information and what for.
Doubt, ask, choose, decide
Don’t hand your body over and just “have things done to it” without questioning. The System has millions of bodies to experiment with and to learn on; you only have one. So many times the System recommended something, and later on it turned out to be harmful and the guideline was abolished, but thousands of trusting patients have been harmed by then!
Ask the doctors: what are my personal risks? do I really need this? what does this treatment involve? what are the other options? what are the pros and cons? what exactly this medication does?
Don’t be afraid to go against the System guidelines if you suspect they are not good for you. Don’t hesitate to say ‘NO’. Seek a second opinion. Make yourself the centre of your health care. It will add extra responsibility, research, reading, investigation and learning, but your life, health and happiness are worth it. Don’t forget that it is your body, your health, your life, and, therefore, you must be able to question, know, decide and choose, regardless of what the System wants. If your doctor thinks otherwise, find a different doctor. It may be not easy as there is still a lot of paternalism in the medical system, but if you feel like you are left outside of the discussion about your own health and body, feel that you are treated like 0.00000005 rather than 1, you have to step in.
The System is not considering every individual. Above all, it is concerned how to:
1. Maximise, streamline and speed up its performance and/or profits.
2. Protect itself.
In other words, the System does not care about you, it cares about keeping the largest number of taxpayers satisfied while earning more, spending less and having its back well-covered. If a procedure is simple, economically viable, safe for the medical profession physically and legally, and helpful in 95% of cases, the remaining 5% for whom the procedure is harmful may not be given a choice or full information. 95% sounds good, but only until you are one of the 5%.
Take, biopsies, for example. Biopsy is a very common procedure, and many patients with suspicious neoplasms are told to have a biopsy. Often, a biopsy helps to make a diagnosis and save the patient, but it also saves the System from lawsuits: the doctor will tick the box “full investigation done”, and no future lawsuit is a threat. Looks good? Sometimes. What doesn’t look good is that the patients are simply told that they need a biopsy. They are not told that, besides being very painful, the biopsy can let an isolated tumour metastasise. The patients are not explained the downsides and dangers of the procedure, and therefore, deprived of their right to know and to give a truly informed consent to the procedure. Despite some studies showing a 50 percent increase in the spread of cancers due to needle biopsies (John Wayne Cancer Institute, California), this information is often hidden from the patients. Why? Because:
... the devastating effect that the development of such metastases has on the patients involved. First, instead of being told that they have a tumor that is almost certain to be cured by localized treatment (surgery with or without adjuvant radiation), they learn instead that the cancer has now escaped out of a confined area and has been seeded into another part of their body. Second, they will almost certainly now be strongly urged to take highly toxic combinations of chemotherapy with all its unpleasant and dangerous side effects, a treatment that would not have been necessary had the tumor remained confined to its site of origin.
Imagine the outrage these patients will feel when they learn that many of these sentinel node metastases were caused not by the natural progression of their disease but directly by the actions of well-intentioned (but ill informed) doctors. Imagine, further, what will happen when patients find out that questions have been raised about the safety and advisability of needle biopsies for a number of years by some of the finest minds in oncology. Imagine the disruption of the smooth functioning of the “cancer industry” when patients start demanding less invasive ways of diagnosing tumors. And imagine the class action lawsuits.
I think it is because of nightmare scenarios like this that no one in the medical community has yet come forward to draw the obvious conclusions from this provocative study for the general public. Doctors are silent. Politicians are unaware. And journalists, whom we look to as a “fourth estate” in issues of public policy, are silent on this, as on most of the really outrageous developments in the cancer field. (Dr. Ralph Moss)
“You need a biopsy so we could analyse the tumour”, says the doctor. “Ok”, replies the patient. And that is called an informed consent. While it should have been more like “The System wants me to do a biopsy in this case, because if I don’t do it now and you discover the cancer later, you may sue me for missing it. The biopsy may be painful, it may also cause an isolated cancer to spread and become incurable, but it may also help to reveal a malignant tumour earlier. Here is the information about the procedure, here are the possible outcomes. Would you like to do it?”
This is not to say that everyone should refuse biopsies. It is to emphasise that the patients must be told the truth, the whole truth and nothing but the truth about all the benefits, side effects and dangers of anything that is offered to be done. They should not be told “it’s virtually painless” when it is in fact painful, they should not be told “it’s safe” when it is safe only “in most cases”.
Often, you have to sign a long and intimidating consent form after being told that the procedure is safe and necessary. But try to ask the doctor to sign a guarantee that the procedure won’t make anything worse in your body and there are no other options that might have been better, and see what happens. No medical practitioner wants to sign anything like that, because suddenly “nothing is absolutely safe” and “you can never guarantee”... See the one-way road? They are protecting their careers, and that is the right thing to do for them, but you also have a right to protect your health and your life. You have only one life, and you cannot afford to settle for the option that is cheaper, better and safer for the System. It must be the best option for you.
Another example: the long-standing obsession of Australian health care system with pap smears. It really is an obsession, to the point that it makes women feel like their bodies have the only organ — cervix, because no matter what the reason of their visit to the doctor is — be it a sprained foot or inflamed tonsillitis — the women are asked when they had the last pap smear and pestered to have the next one if they are “due”. (Once the woman gets older, she adds breasts to her anatomy and starts being pestered about mammograms and breast cancer, despite the research showing that the radiation and pressure from mammograms may cause or aggravate the very cancer they are trying to detect). The hype around pap smear screening deceives women into thinking that cervical cancer is a rampant disease and should be the focus of their health care, diminishing the importance of much more common and dangerous health problems. Pro-screening doctors never tell women that the lifetime risk of developing cervical cancer is only 0.68%. Neither they tell that for those who regularly submit to routine pap smears, the lifetime risk of being sent to further investigations, painful cervical biopsies, or undergo harmful “treatments” for false positives or minor cervical abnormalities that would otherwise heal on their, own is shocking 77% [Kavanagh A M, Santow G, Mitchell H, “Consequences of current patterns of Pap smear and colposcopy use”, 1996]. Formally, these medical tortures are called “minor and simple procedures”, but one should try to imagine how they would’ve been called if anything of the sort was performed on men. Most of those harmed-for-nothing women are brainwashed by the System to believe that they had a mortal illness and the “treatments” saved their lives. Simple maths show that this cannot be true. If it was true and the 77% of referred women were indeed treated for a mortal disease, the incidence of cervical cancer amongst the women who managed to avoid screening would be 77%, which is far from the truth. According to the medical officials only about 60% of targeted women participate in pap-screening, and those 40% who don’t screen make up 3/4 of all cervical cancer cases. Which means that the highest possible risk for those who don’t screen is 1.275%, and the lowest possible risk for those who screen all their life is 0.283%, an therefore there is less than 1% difference in chance of getting the cancer no matter whether one screens or not. So, 77% or 1.275%? The difference reveals a huge mismatch between the truth and the brainwashing medical propaganda.
“Invasive cervical cancer is a rare disease. The annual incidence was below 15 per 100,000 in Australia even before the National Cervical Screening Program began, but current screening is detecting some kind of abnormality in about 5000 women of every 100,000 screened” — Australian Institute of Health and Welfare statistics (2003) given to medical professionals in the cervical cancer screening guidelines. “Cervical cancer is the second most common cancer in women worldwide” — this is what women are told to get them into screening. A bit of a difference, isn’t?
To add insult to an injury, according to the same medical officials, “up to 90% of the most common form of cancer of the cervix could be prevented if women had pap smears every two years”, which means that pap smears are even more useless for less common types of cervical cancer, and that more than 10% women with cervical cancer got the disease despite having all the pap smears, and probably ignored early symptoms due to erroneous reassurance given by the unreliable test. Which brings us to the final score: 77% of those having regular pap smears are harmed for nothing and 10% with cancer are missed by the regular pap smears. Now, how many women are openly offered to make an informed decision to take part in this screening program to reduce their risk of cervical cancer by less than 1%, with 77% chance of being harmed for no benefit? None! Every woman is told she “must screen because it saves lives.”
One may ask, why is the truth hidden, skewed and twisted? Because it is easier and cheaper for the system to butcher 77% healthy women than to treat 0.68% with cancer, and hiding the truth is the only way to make the population comply. There is also too much politics around women’s health care these days: after centuries of neglect, everyone is trying to score political points by telling women what to with their own bodies. And, perhaps, the astonishing amount of painful and harmful (but very quick, cheap and simple for doctors to perform) “treatments” makes it look like pap smears really save lives, and so the screening program keeps going on, securing medical employment and keeping female patients on a short leash and their reproductive organs under the government surveillance, which may sound ridiculous, but it is the only explanation why HPV-vaccinated women are told they must continue to get pap tests because the vaccine prevents only up to 80% of cervical cancers, Amazing, isn’t it? Pap smears that detect less than 90% of cancers and lead to harm of 77% of women are advertised as wonderful life-savers, yet the vaccine that can prevent 80% of cancers is not good enough to stop pap smears. Unless of course, the System rolled out a program it is still unsure about, and needs to keep the guinea pigs coming to finish the research and find a new way of generating the income.
Then, did anyone’s doctor explain why in Finland pap smears are recommended every 5 years for women after they are 30 year old, while in Australia they are pushing the smears every 2 years once girls turns 18? (In USA there are even more outrageous cases of withholding oral contraceptives if women don’t want do pap smears every year. Patients pay for pap smears and the doctors receive benefits for doing them; but, of course everything is presented as being solely for the women’s own good.) Remarkable, with all that, Finland has the lowest rate of incidence of cervical cancer in the world. How is that? Because they know in Finland that young girls show a lot of pap smear abnormalities that resolve without any medical intervention; they know that scaring young women with cancer, detected abnormalities, and, even worse, operating the abnormalities, is damaging the health and the mind. They also know that such damage and stress may, indeed, lead to cancer in the future. Another thing they know in Finland is that ordinary pap smear is a very unreliable test and shows lots of false positives and false negatives; so they use a more reliable and more expensive preparation. It does’t cost Finish women any extra — the medical system in Finland is free; and because those smears are more accurate, less of them is required and less money needs to be spent on the cervical cancer screening. In Australia, they do the test cheapy way, and in the end it costs taxpayers more. That is why Australia recommends paps every 2 years: not to detect cervical cancer, which takes about 10 years to develop, but to make up for unreliability of the cheaply done test. Are Australian women told any of this? No. They are just pestered to hop on the examination table and scaremongered that if they don’t do it, they will sure get the cancer and leave their children motherless. Also, the women aren’t told that the 2 year intervals were set by the System after lumping the risks of the whole population: those who enjoy one night stands every Friday (and therefore are at a greater risk of the cancer-causing HPV infection) and those who is in a long-term monogamous relationship; which means that the first category may benefit from 2 year screening, while the second one may not need this test at all. But the women are not allowed to evaluate their own risks and needs or choose their own preventative strategy. The pap test can feel degrading and humiliating for some women, can damage their self-consciousness and sexuality. But the System doesn’t want to consider that. It knows that pap smears are cheap, two-year intervals give a greater control over women and provide good numbers for the annual reports about cancer prevention. For Australian (and American) health system, a proven unreliability of a test is not a reason to stop imposing it on the patients, nor to replace it with a better test, it is a reason to insist on recommending to do it frequently and regularly.
Then, there is problem of Pap Smear Registers run by each Australian state... After a woman submits to propaganda and does the pap smear, her personal details together with her tests results are automatically passed to the female genital surveillance database (register), stored in their database and used for their researching, statistical and self-promotional purposes. Another function of the registers is to bombard the woman with letters and reminders when they think she is “due” for another pap smear. It is unknown how anyone can be due for an optional, elective screening procedure, but the letters arrive nevertheless. The registers also contact the defaulting woman’s doctors to warn the doctors that they are not brainwashing the woman well enough because she doesn’t do what the System told her to and “missed” her pap smear. Luckily, the woman still has the right to opt out of such “care” if she doesn’t want the government organisation to monitor what is going on between her legs, but she will have to sign the opt-off request each and every time she does a pap smear or other related test. Forget to say ‘no’ just once — and all the private information goes to the register again. It is ivasive, patronising and outrageous, like any other imposed opt-off arrangement. Any service, especially those dealing with private matters, must be strictly, explicitly opt-in. But the System knows that there are not too many women eager to give their privacy away and be haunted “for their own good”, hence the opt-off only.
Under this legislation, “it is the Pap smear provider’s responsibility to inform each woman having a Pap smear, histology or HPV DNA test about the PSR. This includes telling the woman about the existence and purposes of the Register, the identifying and clinical information about the woman that may be recorded in the Register, and that the woman may elect for her identifying and clinical information not be automatically included in the Register. When a woman advises her Pap smear provider she does not want her details recorded on the PSR, the Pap smear provider must place a ‘Not for PS Register’ sticker or write ‘Not for PSR’ on the Pathology Request Form each time a Pap smear or related test is ordered.” In reality, very few women are told about the existence of the Registers, let alone offered the chance to opt out on the spot. Medical practitioners use the excuse that it would be impracticable to spend time on such talks, yet they find it very practicable to waste every woman’s consultation time on lecturing her that she “must screen” or that she “is due for another smear”.
“For our own good” — we hear it too often, no matter how painful, inconvenient, invasive or unnecessary a procedure is. Too often there is no explanation why we need it and where exactly that “own good” is going to be in the long run. “For our own good”, says the System that for decades, from 1950s to 1970s, coerced unmarried Australian women to give up their newborn babies for adoption. The System that sincerely believed that tying women to their beds, screwing their alertness with drugs and taking their children away forever was for their own good. Unmarried mothers automatically had their hospital records marked ready for adoption, even before giving birth. Many were sedated to the point of not remembering signing the adoption documents. As a result, the women have suffered immense emotional distress throughout their lives. The system decided that such pain was an appropriate punishment for the women’s immorality and falling pregnant ouside of a government-controlled marriage. At the same time, the system made birth control difficult to access and termination of pregnancy illegal. All for someone’s own good too? Nowadays, the System was pushed for an official apology to those women for trauma and ongoing mental health problems associated with forced adoption, but who can guarantee, that in 20 years the same System won’t be apologising for another initiative it imposes on us today? So, if we don’t stand up for ourselves now and just allow anything to be done to us, all we can get is an apology, some time in the future, at best.
If the System really cared about women’s heath, they would do a good study on why one half of the women avoid screening and another half are so badly harmed by it instead of inventing new campaigns, ads and incentive payments to doctors for coercing a set percentage of their patients into screening. If the System really cared about the best care for women, it would offer HPV self-tests with an option to do the test anonymously, which would produce much more reliable results, much better risk assessment and would guarantee that the woman’s privacy is respected and protected, and that the decision about the further actions is totally up to her. But the System obviously doesn’t want women to make their own decisions, it wants to order, control and violate privacy, because it’s simpler, cheaper and and produces good statistics.
Carefully orchestrated campaigns are constantly unrolled to get more people into screening. They don’t do it by providing true facts and unbiased information and allowing people to make up their own minds. It is done through misinformation, exaggeration of the disease risks and the benefits of screening, by omitting the risks of testing, by usage of scare tactics, appeals to guilt like “do it for your family”, “don’t leave your children motherless”. If the population does not have a solid knowledge of true facts, risks and benefits, they become victims of anxiety and end up in the doctor’s room just to get read of the fears induced by such campaigns.
If the System really cared, it would tell the women that there is no proven benefit of pap-smears when they are younger than 30, and that only 5% of women over 30 are HPV-positive, so the remaining 95% are not at risk of cervical cancer at all. But instead, the System prefers to continue with “HPV is very common, so everyone is at risk” line. It prefers to set target to pap-test all women and to send most of them to harmful treatments just in case, rather than let the women to determine their HPV-status and see that most of them don’t need pap-smears at all. The System covers its back with the carefully composed explanation that because most HPV infection heal without consequences, discovering that she is HPV-positive would lead to unnecessary stress for the woman. What a sudden care about women’s stress! According to this approach, the System would rather perform an invasive exam on all women every 2 years, scare 77% of them at least once in their lifetime with abnormal pap-test results and send them to painful biopsies and harmful treatments, rather than tell 5% HPV-positive women that they have a small risk if their infection persists. The System would rather butcher women’s cervixes whenever there are some abnormal cells than let the women find out that they have an infection and make healthy changes in their lifestyle as soon as possible to prevent any the abnormal cell from forming. There is either no logic, or it is not a health care — because it is not about heath, nor about care.
The System keeps protecting the faulty pap-screening program. The program is already in place, it’s massive, lots of money has been spent, lots of people employed — of course no one is willing to admit it brings more harm than good. This hinders and slows down the development and introduction of better alternatives and less invasive tests. The pap-smear still is touted as the best “life saver from cervical cancer”, and the majority of women are led to believe it. But the sad thing is that if there is no demand for anything better, we won’t be offered anything better, and those who blindly trust the System wrongly believe they are getting the best care and are being fully informed with the latest technology and statistics.
This lengthy, angry and shocking digression on cervical cancer screening was just a simple example of how deceptive, unethical and harmful the System’s actions can be, even when it is just about a cheap and quick test. Imagine how much it can misinform, deceive, mislead and harm in more complicated matters!
The System deals with millions of lives. It can afford to lose a few for a bigger gain. It will be the lives of those who are so far from the System’ statistical average that the “averaged” treatment will inevitably do more harm than good. But each person can’t afford to lose their life or the lives of their loved ones to the statistical error. What is nearly nothing for the System is too much for the individual.
Some may say that Australian health care is perfect because Australia has one of highest life expectancies in the world. However, it has to be taken into account that Australia overtakes many developed countries only by a tiny margin, and it intakes over 150 000 migrants every year (2010–2011 fin. year — 168 685 migrants, according to the Department of Immigration and Citizenship Annual Report), most of the migrants (skilled migrants) have to pass a thorough medical examination and are not allowed to come to Australia if there are any current or potential problems problems with their health. Which means, every year Australia adds about 0.5% of screened and healthy people to its population. If it was not for this “import of health”, Australia could lose many positions in the life expectancy list.
“Painless” means it won’t hurt the doctor
Have you ever been left shocked, embarrassed or feeling guilty for being such a sob because a procedure that the medical brochure or the doctor described as “painless” turned out to be a sheer agony? Don’t blame yourself. It is a common practice. The medical profession routinely uses euphemisms and downplays the pain, calling painful procedures “painless”, and extreme pain — “mild discomfort”. They know that it is impossible for the patient to quantify the pain and later prove how it felt, so they say whatever keeps the medical conveyor belt going smoothly, quickly and profitably. When confronted, they usually say it is to reduce the patient’s anxiety, dismissing the fact that the patient is left feeling violated, betrayed, loses trust in doctors and often cannot agree to receive further “health care” no matter how necessary.
Patients are often promised that once they feel any pain, the doctor or nurse will immediately stop whatever they are doing. In reality, the action continues despite the patient begging to stop. “Almost done”, “C’mon, it’s not that bad”, “Just a bit more”... Sounds familiar? Nobody had any intention to stop, the promise was a deceiving lie. Once bitten, the patient will be more anxious next time, will refuse even less painful procedures, and will not believe anything the medical profession says. For that, the patient will be rediculed, told to be reasonable or offered counselling. First time, it was the patient’s fault for being a wuss; the subsequent times, it is their fault again for being unreasonable. That’s how the medical establishment sees it.
If a patient lodges an official complaint, most of the time they get a blanket reply that they “received the service according to all standards and proper pain management was administered”. There is no openness, honesty or justice, because despite holding the health and lives of public in their hands, the medical profession is only accountable to their peers. Imagine if every occupation had to answer only to their colleagues! Wouldn’t that result in malpractice, negligence and cover-ups?
Patients are often given incorrect doses of anaesthetics, or an anaesthetic drug that is inefficient in their case despite the existence of a better alternative. Sometimes it is done to cut costs, sometimes — because the medical establishments doesn’t have the patience to wait until the anaesthesia starts working and they begin the procedure too early, or they want to get rid of the patient as quickly as possible (especially at the end of the day) and a gentler procedure or a stronger anaesthetics would mean the patient will need to spend more time in their care. The staff wants to go home, so they rush.
Same goes for risks and complications. It is easy for a doctor to send a patient to a painful, invasive procedure, saying that’s the “gold standard”. Very often, there are better alternatives, but they are either inconvenient for the doctors, or the National health care system sees them as unnecessary expensive. The system processes millions of people, so it always opts for something easier and cheaper, yet it always wants more tax funding. People’s suffering is free. Saving a dollar on each procedure means millions. That’s where the “gold” comes from. Even when the patient is willing to pay extra for more safety and less pain, the establishment cannot be bothered altering their routine. It is more effective to spit this patient out and wheel the next one in than fiddle around being gentle and considerate.
Verbally, a procedure is often described as “routine, safe and well-tolerated”, but when it comes to signing the consent form, the patient is suddenly given a long fine-printed document listing all sorts of risks and nasty side effects. Often the paperwork is done just before the procedure and the patient is too stressed to read anything properly. If they do read and question the complications, they either face a rude, bullying and dismissive attitude of the medical staff, or, again verbally, told that all these horrors are “extremely rare”. How rare? Ask for a precise number and ask to have all the promises in writing. After all, you have to sign, why don’t they too? The medical profession can be very casual, promising and reassuring in words, but not so much on paper. Remember, your procedure is an everyday money-making activity for them, but for your it can be an experience affecting all your future life. And you want to make sure it is a good experience rather than a nightmare that would haunt you forever.
At the same time, beware when a nurse or doctor tells you that they will give you “something to relax you” before the procedure or surgery. It is very likely that the medication is one of benzodiazepines (diazepam, midazolam / Versed, etc). Patients are rarely warned that once a sedative drug is administered, the patient will no longer be able to participate in healthcare decisions, that sedatives invalidate any patient testimony regarding their treatment. Patients are generally only told they are being given “something to calm them”, and often they are told this as the drug is being administered. These drugs are used for their sedative, hypnotic, sleep-inducing, anti-anxiety, anticonvulsant, and muscle relaxant properties, and for the convenience of the medical personnel, as they render the patient very compliant, no longer asking questions, protesting or complaining about pain. They generally induce anterograde amnesia — blocking memory by preventing the acquisition and encoding of new information, and most people will not clearly remember what happened to them while under the effect, even though they were told they will be “awake”. The important thing to keep in mind: sedatives do not reduce pain. The pain will be there; the patient will be just held down, because the patient is unlikely to remember it, and even if they do, their testimony is invalid.
Though these drugs are approved, medical science does not know how exactly they work. The side effects can be very serious and traumatic: delirium and aggression, including patients attacking or trying to leave, losing touch with reality, not knowing where they are or what is really occurring, nightmares, sleep paralysis when a patient is aware of the procedure and feels pain but cannot move or communicate, partial memory loss with recalling a bad experience, an overcoming feeling of creepy obedience or being abused or violated, symptoms of post-traumatic stress disorder (PTSD), episodes of panic and anxiety, “flashbacks” for weeks, months or years after the procedure, long term memory disruption. Most of these side effects happen after the person left the medical facility or was discharged from hospital, and most of them are hard to prove that they started occurring after the procedure.
Beware of lies and the partial truth
It is appalling and angering to see how many patients are put through extremely painful or harmful procedures without being accurately informed of what to expect. Most doctors tell their patients that “they’ll feel a little bit of pain” or “some mild discomfort”, the so-called information brochures given to patients do exactly same: they downplay the pain and harm and make procedures look safer and simpler. Most of the time, the lies are told to women about women’s health-related procedures, which not only leaves the women in deep shock and depression after the procedure, but also does not allow them to ease the agony by preparing and taking painkillers before the procedure.
In 1930–40s, Nazi used a special language. For example, death process in camps was called “special treatment”. Such euphemisms not only shielded reality from their victims, but also softened the truth of the Nazi involvement in mass murder. These days, hardly anyone would agree that it was a good practice. But if so, why is it still acceptable in medical settings?
For example, cervical biopsies are described by doctors as “a bit of cramping”, while many women, even those who birthed children, report that it was the worst pain they ever felt in their lives. In addition to the excruciating pain, some doctors make the experience worse by dismissing the patient feelings as they are just a big wuss and making them feel guilty for screaming, crying or fainting. Cases of male ob/gyn doctors telling the agonising women “c’mon, it’s not that bad” during cervical biopsies are beyond comprehension! Then, when the same women call the doctors next day to complain about extreme pain or heavy bleeding, they are told by the staff that it’s normal. Normal?! A day ago it was described as “slight discomfort with very rare complications”.
Perhaps, the medical profession believes that ignorance is a bliss and that it is better not to scare the patients in advance; which means that they also believe that it is better to let the patients to learn the truth through pain shocks, emotional traumas and feeling violated.
If you are not the person who prefers this way, make sure to obtain the true information about any procedure before you agree to it. Insist on the whole truth. Insist on the proper pain management. The modern range of anaesthetics allows not only to eliminate the pain during the procedure or surgery, but also to greatly reduce the pain caused by the injections of the anaesthetics themselves; it is just that the medical personnel is often either lacking the necessary skills, or do not wish to give extra time to each patient, or simply cannot be bothered. Proper pain management may also be considered too costly and thus not offered under national health schemes, because the aims of these schemes are to prevent the development of the diseases that are expensive to cure and to stop people from dying too early; the pain is seen as the problem of the individual until it hinders the individual from work, self-support and socially acceptable behaviour.
Doctors are afraid that if the patients learn the truth and find out that the procedure is very painful or risky, they may refuse to undergo it, demand guarantees, ask for inconvenient alternatives or hold the doctors responsible for the complications and side effects afterwards. In addition, many tests and screenings are done primarily to put the doctors on the safe side with little or no direct benefits for the patients. The doctor will tick the box, but it’s the patient who is left in pain. In addition to the comprehensive information about safety, risks, reliability, side effects, complications and degree of pain, it is very important to ask questions about the actual necessity of any procedure. Make sure that the offered procedures are really necessary. Ask how exactly you will benefit from the procedure.
It is also useful to know that medical practitioners often receive “service incentive payments for reaching screening targets”, or, in other words are paid extra for persuading their patients to undergo certain tests, screening or procedures. In most cases, the patients are not informed about the doctors’ financial interests in such persuasion, pressure and coercion. This incentive payment money can be another the reason behind the misleading information about the procedures given to patients: the pain and risks are diminished, while the necessity and reliability are overstated.
Another sad fact about mass screening programs is that they often lead to overdiagnosis by picking up abnormalities that otherwise wouldn’t do the people any harm during their lifetime. Most people have some sort of abnormal growths or tumours, and those would have never revealed themselves if the person did not submit to the screening. But once the abnormality is discovered, comes a miserable time of overtreatment and unnecessary worries, and what is the most unfair, the patients are mislead to believe that the screening saved their life. The more unnecessary the treatments was, the more people believe their lives have been saved by the screening. Alarming people about a disease they were never going to die of, stressing them with a scary diagnosis, torment them with unneeded treatments, and then declaring them “cured” — makes it seem like the screening was successful.
As a doctor I knew (who has never gone to see another doctor as a patient) liked to say: there are no healthy people – they are just underscreened.
Beware of unethical practices
Medical ethics is supposed to be founded on the four pillars:
- patient autonomy.
Informed consent to medical interventions is the key element of patient autonomy. Informed consent means a voluntary, uncoerced decision, made by a sufficiently competent or autonomous person on the basis of adequate information and deliberation, to accept rather than reject some proposed course of action that will affect him or her. [Gillon R., “Philosophical medical ethics”]
Insufficient information, biased opinion, partial truth, pressure, coercion, paternalistic attitudes, undisclosed targets and financial interests (e.g. incentive payments) — all these immediately render any medical practice unethical and disables the patients to make an informed consent.
The problem with the medical system is that in most cases it is only answerable to its own, i.e. unless a criminal deed is duly suspected, a misdeed by medical employee conducted in a medical settings is investigated by their colleagues. Imagine what kind of justice the society would have had, if house burglars were investigated and tried by house burglars? It is an extreme comparison, but you see the point. It is very difficult for a patient to prove doctor’s misconduct to a medical panel.
Access, know, assess, control
Even if they are allowed to, no one can make a good decision about their heath without an unconditional, easy, free, and full access by patients to any information about their health, which includes all medical records, reports, tests results, and any other information created by any medical practitioner about the patient.
Inaccessible medical records, sealed envelopes marked “to be opened only by the referring doctor”, the delivery of pathology reports and other diagnostic test results from laboratories to referring doctors bypassing the patients are the usual practice that diminishes patient evolvement in their health care and making informed consent nearly impossible. How can anyone make a truly informed decision if the information may be unavailable, incomplete, distorted, or presented by a clinician in a one-sided way? Often such approach is represented as being “for patients’ own good”.
A health care team is made up of more than the health care workers and professionals; the team also includes the patient. Currently the health care system underutilises the expertise patients can bring to the health care partnership. In addition to knowledge about their symptoms, pain, preferences and attitudes to risk, they are a second pair of eyes if something unexpected happens. Research has shown that there are fewer errors and better treatment outcomes when there is good communication between patients and medical personnel, when patients are fully informed and educated about their medications. Poor communication between doctors, patients and their carers has also emerged as a common reason for patients taking legal action against health care providers. (The Australian Commission on Safety and Quality in Health Care)
It must be the patients’ decision whether they should have access to the information about their own health. Many examples show that both patients and doctors benefit from letting the patients to be fully informed and involved in every aspect of health-related services, while excluding patients from their own health care can be traumatic, dangerous and deadly.
Giving patients an access to their medical records allows them to get a better understanding of their condition and treatment. Patients that are fully informed and actively participating in their own health care are much more likely to have a better recovery and healthier life. In addition, patients can ensure that the records are accurate. Such openness and transparency increase patients’ confidence in the health system and trust in their doctors. Simple logic: if the treatment is correct and the records are accurate, why hide them?
Patients must also be able to easily obtain a copy of their pathology laboratory or diagnostic test results without an additional doctor appointment or other obstacles. At present, Australian patients cannot get a copy of the results unless they see the referring doctor again, or if they knew to ask their doctor in advance to direct the lab to do so. If the doctor is sick, away, not in, on holiday, etc — tough. The bills for the tests are yours, yet the results you paid for are the property of the lab and the doctor. The Australian medical system claims that the patients don’t have access to the results because they may misinterpret the information and have unnecessary worries. It however doesn’t disturb the system that waiting for the results for weeks, while being unable to make an appointment can cause much more anxiety. Not every patient is ignorant to the point that they are unable read the word “negative”, but every person will be in a dreadful state during a long wait. So, it makes an impression that it has little to do with caring about the patients’ well being, and is more about control and an extra payment for an extra doctor visit.
Currently, as the government is trying to convince more people to sign up for eHealth / My Health Record system, it says that one of the main benefits of having an online health record is the ability to see diagnostic imaging reports (like ultrasound or x-ray results) and pathology reports (like blood tests)... Many people think: “Great! I no longer need to waste time and money on an extra appointment with my doctor just to be told that as is good, or to live in stress and anxiety before I can see the GP.” However, what the colourful MyHR-promoting brochure doesn’t tell, is that the results will be uploaded to the system by the doctor, not the lab or diagnostic imaging centre. So if the doctor doesn’t believe in patient’s control of their own health information and/or wants to make an easy dollar by forcing the patient to make another appointment, they will be able to do so as easily as before. The brochure brags that nearly 2000 Australians are signing up every day, yet does not want to say how many become disillusioned, opt out and want their record deleted. It also does not tell that nothing ever will be deleted from the system, even if the person opts out and “cancels” the digital record. The brochure doesn’t list any drawbacks, downsides or dangers of signing up: there is not a word about possible misuse of information after future change of legislation, invasion of people’s privacy by government agencies, unwanted surveillance, dangers of the system being hacked and information stolen. It only lists benefits. And all those “benefits” can easily be changed and removed but the government at any point in the future. It has never been about the patients’ convenience. A privacy advocate from Australian Privacy Foundation suggested that the My Health scheme “isn’t designed to be used for primary health care. It can be used by law enforcement and revenue protection agencies. What that means is that the police, ASIO, ATO and Border Protection, amongst others can all request to see your health data. You won’t know about it because the government won’t tell you.”
Australian authorities like touting Australian health care system as one of the best in the world. For the medical establishment, perhaps, it is. For patients — not so. With the compulsory Medicare levy, which takes 2% of every person’s income and often still leaves people with large out of pocket expenses, many forms to fill and multiple bills to pay — all while the person is stressed and unwell, and with the heavily imposed private hospital health insurance, which also leaves people with huge out of pocket expenses and often throws complicated cases out to public hospitals anyway, Australian medical system costs taxpayers quite dearly, and yet it is deliberately set up in a way that a person with any reasonable amount of self-esteem would avoid using it if possible. There is no way of getting some of your tax money back without giving up your privacy. There is no way of getting any anonymity or protecting your privacy even if you become a 100% private patient, as ironic as it sounds.
When politicians and medical bureaucrats boast of the Australian medical system being “the best in the world” and of “the highest standards”, they never mention what their conclusions are based on, what parameters have been compared, with which countries and via which study. This is in line with Australian medical approach making statements that are not supported by any evidence, just as it have been done for decades in cancer screening and other areas of medicine. At the same time, many reports and studies show that Australia has very high and, in some aspects, the highest rate of medical errors, negligence and hospital infections in the developed world, causing many thousands of preventable deaths, permanent and serious injuries to patients every years, all these with one of highest out-of-pocket healthcare costs in the world. So we got “the highest” alright, but that is far from “the best”.
There are a few “reasons” cited by the medical system to justify keeping the patients ill-informed and barely involved in their own health care at doctors’ discretion:
1. The treat and burden of lawsuits.
If so, then it should open its eyes and see that it is the lack of information and transparency that causes doubts, inconfidence, mistrust, anxiety and fear, and leads to blames and lawsuits; while knowledge and transparency are the keys to understanding and trust.
2. Medical records, reports and diagnostic test results are written in a specific language, and only people with medical training should have access to the “raw” medical information.
Law rules and tax regulations are also written in a specific language, and not every person is a qualified lawyer or an accountant, but everyone has to read those documents to obey the law and pay taxes. The system is definitely not concerned here as much.
Doctors and other medical staff are not trained in computer safety and data security either, yet they all use computers and collect and handle huge amounts of highly private and sensitive information about patients. If you see a computer connected to the Internet at your doctor’s, chances are that Microsoft/Apple, software developers and support, information storage cloud provider, the government, domestic and foreign surveillance agencies, researchers, a cohort of unrelated companies and corporations, and even bunch of hackers have access to your medical record. Only you don’t have an unrestricted access to it! If we follow the medical system’s logic and take into account the frequent cases of leaks, hacker attacks and information privacy infringements within medical institutions, doctors and all other medical staff should be banned from collecting any personal information, using computers and keeping medical records, because privacy violation, identity theft and fraud can cause a person no less grief than a physical ailment.
3. Patients may have undetected mental conditions, high level of ignorance, or be easily frightened, so it is better to impede everyone’s access to medical details, just in case.
If those very people are considered to be normal, knowledgeable and smart enough to vote, work, pay taxes and rise children, they must be normal, knowledgeable and smart enough to decide whether they want to know every detail about their own health, or to receive a concise, adapted and digested version of the medical story from their doctor, or not to receive any information at all.
Special conditions, mental state or fearfulness of some patients must not bear on the right of everyone else to full information about their health and the risks of medical procedures.
The medical system makes a bold point that everything must be left to certified professionals. In this case, individuals are required to hand over their health and lives into the hands of medical professionals. However, if we follow this logic, how can the doctors — who are not information security specialists — require us to trust them our personal and private information? Medical employees are required by law to keep their patients’ data secure and safeguard its privacy. But how can doctors give such guarantees if they barely know what happens to the data after it is entered into the doctor’s computer? It is definitely not secure. And if the doctor engages an IT professional to take care of the data security, it is not private anymore. Imagine an information security specialist being a patient and telling the doctor not to enter any private data into the computer, that it is for IT specialists only? Now imagine the doctor telling the IT patient that their full medical record can be accessed by medical specialists only? Which scenario is more plausible? One-way road again?
The unconditional, easy, free, and full access by patients to any information about their health is not about forcing everyone to learn all the complicated and intimidating medical terms. It is about treating patients as Humans (known taxonomically as Homo sapiens, Latin for “wise man” or “knowing man”), telling them the whole available truth, giving them a choice, and recognising their right to have all the information to decide for their body. Otherwise, all the blurb about “informed consent” is just a farce.
It shouldn’t be a surprise for the System that there are many people who are knowledgeable enough to make some sense in the medical information and who want to be allowed to make that sense. If it turns out too difficult, they will ask their doctor. Why do the people who can and want to be of a great help to their own health have to be disadvantaged and suffer only because there are some who can’t? Why presume that each and every patient has zero knowledge and understanding alongside with a big desire to sue someone, and that the runs from GP to the specialist, to the laboratory, then back to GP, and then all over again is absolutely necessary in every case? Why bring everything down to the worst level of debility and idiocy? By fool-proofing everything, deciding for everyone and presuming stupidity, the system only encourages it. Let’s hope that it is not the aim.
Why don’t we have an option to seek medical help anonymously, even though we are entitled to it by Australian Privacy Law, and it would greatly increase the chance of people seeking medical attention when it is really needed? Why aren’t Australians allowed to self-refer to tests, ultrasounds, x-rays and other diagnostic if they are happy to pay for them privately, like it is done in many developed countries? Why are we forced to waste hours in general partitioner’s office to get a referral to a test and then waste more time there again to get the results? Why are there no anonymous, freely available abortions at woman's request? Why are women forced through humiliation and obstacles, and then required to produce identity documents when it is known that Australian abortion clinics have been raided by police in the past? Why is abortion still under criminal law like in Middle Ages? Why every attempt to legalise euthanasia is crushed by the government influenced by medical dictators and religious fanatics? Because Australian health care is neither about health, nor about care. It is about the government control and surveillance. Individuals cannot do or decide anything without the system approving it and putting in a dossier. The latest attempts by the government to drag everyone in the online My Health Record system despite 90% of population refusing to use it only proves it. So does the recent announcement by Australian Bureau of Statistics to keep people’s names and addresses collected during the Census and link them to individual medical records.
Denying information to the patients, allegedly “for their own good”, is a very grave insult to human intelligence and dignity.
To add some numbers to the the point, we can have a look at the statistics again. After all, that’s how the medical system makes its decisions.
By some estimates, in Australia alone 18,000 people may die every year in hospitals through preventable medical negligence, 50,000 people suffer from permanent injury annually as a result of medical negligence, and 80,000 Australian patients per year are hospitalised due to medication errors. At the same time, every year there are about 230 deaths of cervical cancer, 3,000 deaths of breast cancer and 4,000 deaths of bowel cancer.
Now, how often is the population told to keep an up-to-date copy of their full medical records, to question every medical decision, to do their own research, or to bring a trusted person to every medical appointment for being an extra pair of ears and eyes, for reminding to ask certain questions and memorising the answers? Not very often, right? Full medical records are made extremely difficult to obtain, many doctors get annoyed if the patient asks “too many” questions or wants a second opinion, and friends and relatives are often seen as a nuisance in the medical settings. And, of course, there are no TV ads or posters in public transport with these vital life-saving recommendations. Instead, we are told that, in order to save our lives, we must do this or that invasive and/or harmful procedure to screen for the abovementioned cancers.
So, is there anything wrong with the medical priorities? Or the system is deliberately drawing the public attention away from their inner problems? Makes one think....
Be prepared for the difficulties in obtaining your pathology laboratory test results
In Australia, when a patient requires a medical test, usually they first need to see a doctor and obtain a pathology test request for the laboratory (or a referral to an ultrasound, x-ray or other scan), with the test specimen collected by the doctor or the lab, depending on the test. Most of the time, it is the lab of the doctor’s choice.
The pathology test request contains the patient’s personal information such as full name, date of birth, home address and Medicare card number. If the patient was required to arrange the test appointment themselves, the laboratory will obtain all the personal information by making the patient to fill the forms on the day of the visit. This information is collected by the labs primarily for their convenience, not for the patient’s. In their privacy policies, labs state that they require this information for matters relating to billing, delivery of invoices, reminders and expediting of payments. The pathologies also reserve the right to refer the unpaid invoices to third party debt collection agencies.
The results of the test are sent to the doctor, the bill — to the patient (Unless the test is covered by Medicare, in which case the patient already paid for the test through their taxes. In this case, the information about the test will also be passed to the government).
If the patient wants to obtain the result of their test, they will be told to go back to the doctor. No matter how anxious the patient may be, or how simple to understand the result is, the labs have their “rules”. They are providing services to doctors, not to the patients. The patient will have to either contact the doctor by phone (if the doctor is nice enough to allow phone consultations), or be forced to make another doctor appointment, get time off from work, see the doctor again, get the result and pay for the visit.
To get a copy of the result without another doctor appointment, the patient has to either go through a long and often expensive bureaucratic process of obtaining access to their data held about them by the pathology lab, or remember to ask their doctor to write “copy to patient” on the pathology request at the time of the first appointment. Some doctors are reluctant to do it, because the patient may decide not to come back, or it may diminish the doctor’s control, power and authority. The labs don’t like this either, because this means extra hassle for them in sending a copy of the results to the patient.
Given that the labs are not providing any valuable information to patients directly, the system could have attempted to protect the privacy of people. The patients could have been billed through the doctors practice, and the pathology request sent to labs with some non-personal identifier, assigned by the doctor. However, protecting patient’s privacy it not the priority of the system.
With the current arrangement, the labs are collecting a dangerously large amount of personal information. Many labs are large chains, with many branches and outlets and centralised databases, and nearly each person gets sent to each of the big labs at least once on their life. Which makes laboratories private enterprises that hold personal and sensitive information about nearly each person without even providing any useful service directly to those people (the purpose of any medical test is the result, not the process of sticking medical implements into the patient’s body, nor issuing invoices for that process). It is worth noting that this information is not even truly secure or confidential, as Australian privacy laws permit access to any personal information without individuals’ consent if is required for “health and medical research purposes”.
Patients are legally entitled to a copy of their pathology test results although the treating practitioner is in the best position to understand and interpret the test results and its potential impact for their patient. If patients would like a copy of their test results, they should be requested from the treating practitioner at the time of consultation, or directly from the relevant pathology laboratory. Each pathology laboratory will have their own protocol on how to release pathology test results to patients, and they may inform the treating practitioner of this request. This is because reading their own pathology test results may be distressing or potentially confusing for some people. Pathology test results are also reported using technical medical language and may be difficult for most patients to interpret or understand. (Australian Government – The Department of Health, health.gov.au)
When it is tax time, every person has to be smart enough to read through, understand and fill dozens-page long forms full of bureaucratic jargon. But when it comes to their own health and body, the same people are suddenly deemed to be ignorant, uneducated mental invalids unable to understand a word “negative” or “normal”.
Use overseas medical services in non-urgent cases
If you want to have some medical tests or checks done, are going abroad for any reason and do not wish to be trapped in the Australian medical merry-go-round, it makes sense to find out whether you can do these checks while you are overseas. Many developed and developing countries allow people to request medical tests or checks without any referrals from general practitioners. For example, a simple ultrasound done overseas in the presence of a specialist doctor means that the patient gets a good investigation, an immediate report and all questions answered within 30–60 minutes. In Australia, to achieve the same outcome, the patient will need to go to their GP, get a referral to the scan, go to an ultrasound centre, have the ultrasound with a silent technician, go back to the GP to get the results, hear that there is something not quite clear and another scan is need, get referral for the other test, go to a scanning/testing place for the second check, go back to the GP for more results... Even if all that is covered by the “free” Medicare, the amount of anxiety, inconvenience and time taken off work can be significantly greater than the sum paid for the immediate and interactive service overseas. Often, it is impossible to get your wishes heard within Australian medical settings even if you are prepared to pay the full costs without involving Medicare.
Using private overseas medical services for routine checks also means you can get better privacy because are not required to give much personal identifying information in the first place, your medical information is not passed to Medicare, eHealth, government databases, researchers or registers with a potential to be disclosed further and used without your knowledge or consent; and you get a better control because all the findings and results are immediately discussed with you rather than being sent to other doctors. Some private Australian medical centres may be able to provide better services with fewer middle men and redirections, but overall, they are still subordinate to the Australian medical system that puts its own convenience, budget, political gains, vested interests and control over individuals above the interests of the patients.
Protect your privacy
In the age of rapid development of information technologies, the real meaning behind concepts of “privacy” and “confidentiality” has changed dramatically, and this affected the medical area as well. The medical records are no longer kept on paper, and, while this seems to be a step forward, it also has its downside. The paper records were kept locked, in one location and could not be accessed by anyone unless the person had a physical access or could get a permission for a copy. The records were also destroyed after the patient hasn’t seen a particular doctor for certain amount of years, simply because there was a limit of space in the storage room.
These days, medical identity theft is one of the most common forms of identity theft and growing. Like many small businesses, doctor’s offices often don’t understand best practices when it comes to protecting the information they keep on their patients, and their record-keeping is often based on software and systems that may be convenient for doctors to use, but cannot guarantee patient safety. Medical software often has functions for aggregating “de-identified” patient health information and the company can later share it with the government, sell it to drug development companies, or any other business or third party. De-identified data is no longer considered personal data under the Privacy Act, so patient’s consent doesn’t have to be obtained. However, with the scale of today’s information gathering, later re-identification is possible.
The electronic medical records are accumulated in large databases, they are never deleted, they are easily shared and accessed nationally and internationally, they can be downloaded and copied in a blink, they can be hacked... And while the e-health records are served to the public under an attractive sauce of “just think how helpful it could be if you are in an emergency on the other side of the country”, they took confidentiality away from the patients and became another solid reason why people avoid seeing doctors. Centralised electronic records are also much easier to forge or alter if someone needs to cover up a medical error or a negligence case.
Australian medical system seems to be good at one thing only: collecting personal data and creating dossiers on patients. It is a normal practice when a new patiens hasn’t had a chance to glance at the doctor yet, but is already forced to give their full name, date of birth, home address, employment details, health history, Medicare card number and other very personal information. What if the doctor wasn’t competent or helpful and the patient never comes back? It doesn’t matter: all information about the patient, by the unfair law, is a property of the doctor and can be shared and used in any way the doctor and the current government may fancy. The privacy laws are changed too easily.
In the past, one could get an unbiased second opinion, walk away from a misdiagnosis, unfair labeling, embarrassing situation, privacy issues or a bad doctor simply by going to another practice and starting their new medical file from scratch. Not anymore. The big e-health brother will follow everyone via the IHI (Individual Healthcare Identifier) assigned to every person by the government, wherever they go and whatever reason for seeing a doctor they have. And while the medical system keeps trying to find silly justifications of why people don’t go to doctors, one of the main reasons is privacy woes. Many people don’t want certain things recorded in their medical records, especially now, when e-records can be so easily accessed by many strangers. People don’t like being forced to have e-health records which share every single detail of their health with every single doctor or nurse they see: e.g. a doctor treating someone for a broken arm to know that someone had something like chlamydia in his 20s. People don’t like the System’s approach of creating an illusion of strict confidentiality by denying the patients’ access to their own full medical records while sharing them with many medical and non-medical organisations behind the patients’ backs, without their knowledge or consent. Breaches of patient information stored in pharmacies, medical centres, hospitals and doctor’s practices happen regularly and increasingly frequently.
The introduction of Personally Controlled Electronic Health Record (PCEHR) in July 2012 will not improve the situation. The eHealth record system will provide access to key health information that is already known to the patient: the patient will not gather any extra information about their health from PCEHR. However, the collection and disclosure of such information by eHealth system will endanger confidentiality of the personal and sensitive data. In fact, Australian Bureau of Statistics announced on 18 December 2015 that it will keep people’s names and addresses collected during 2016 Census and link Census data to health records.
At the same time, eHealth records will not replace existing medical records. Healthcare professionals will continue to take and review clinical notes. More detailed patient information will be kept in local clinical information systems, as per current practice. Which means that the patients will need to go through the same old troubles in attempts to obtain the complete and true information about their own health.
Initially, the PCEHR will be voluntary and will allow patients who are able to navigate the system some control over their medical records: e.g. it will allow the participating patients to control what is added to their electronic health record and some control over who can access this information. The patients will also be allowed to “cancel” the their record and to “effectively remove” some documents that have been uploaded to the eHealth record system (though even after the record has been cancelled by the patient, all documents in the eHealth record will be kept in the system for a period of 30 years after the patient’s death). However, there are already concerns that the current PCEHR proposal is the first, appeasing step in a transition that will eventually see the loss of patient control. This first step is designed to calm public fears and vigilance by allowing people to feel in control, but in years to come, eHealth records may take the shape of the current system, where control rests with health professionals only. Therefore, while PCEHR is still elective, consider all the possible issues before deciding to sign up for it, and make sure the harm is not likely to outweigh the benefits in your case. Australian eHealth records system is still developing, and nobody knows whether “personal control” is going to be eventually restricted or removed. There is also no guarantee that the sensitive and/or identifiable health information won’t be disclosed to third parties, stolen by hackers, shared for a research, or used for any purpose other than direct benefit for the health of the person — all without the explicit patient consent.
If you feel it is better to remain anonymous or use a pseudonym, ask for it. Many doctors don’t like it, but it is your right to protect your privacy. The medical system insists that anonymity may endanger some patient’s health by a possibility of inadequate heath service, but it carefully omits the fact that in the absence of the option to seek the medical care anonymously many people will not seek any care at all, adequate or not, and that is a greater danger to the health of a greater number of people. This demonstrates that the medical system doesn’t care about the health of individuals; it cares about what’s safer and more convenient for the system itself. So, the patients have the only option: to take the protection of confidentiality of their personal, private and sensitive information in their own hands. By law, “wherever it is lawful and practicable, individuals must be given the opportunity to not identify themselves when entering into transactions with or receiving health services from an organisation.” Yet in practice, most medical establishments deem in ”impracticable”, without giving any solid reasons as to why. They would rather leave a privacy-conscious person without heath care sought than give up their convenience and control.
At the same time, it may take the patient a great effort to get hold of their full medical records, pathology tests results, medical reports, comprehensive information about medical procedures and the true reasons behind doctor’s advices and decisions. Unfairly, this information is shared between a cohort of people within the medical system, often without the knowledge of the patient, while the patient’s access and participation are denied or restricted.
Australian government and health authorities like repeating that Australia has one of the best healthcare systems in the world. They would say so, wouldn’t they? But for as long as Australian people are not allowed to know the whole truth about their health, and not allowed to make all decisions about what happens to their bodies, Australian heath system will remain far from the best.
More information and some useful links:
RateMDs.com a website with patients’ comments about doctors from Australia, New Zealand, USA, Canada, UK, Ireland, India and South Africa. You can do some research before choosing a new doctor, or help the others by leaving a short comment about your bad or good experience with any doctor you visited. If a particular doctor is not listed yet, you can add the doctor’s name and location to the list. Please, be honest and polite in you comments. No registration required.
Why is ‘marital status’ still a question? a comment by Catherine Deveny on SBS.
Unnecessary Pap Smears an article about cervical cancer and pap smear hype with thousands of comments about the situation. Some comments are very revealing and bring up the truth from various research and personal experience.
ForWomensEyesOnly a woman-friendly site: discussions, comments, personal experience stories, links to the latest reseacrh... Information, support and friendly advice for any woman who has ever felt that the health care system has not acted in her best interests.
Fed up with being treated like a sheep an article by Niki Zmak in Sydney Morning Herald about informed choices, and lack thereof, in preventive screening and medical treatment.
Why I’m saying no to a smear by Dr Margaret McCartney, a Glasgow GP writing about evidence based medicine and shortcomings of screening. The Independent, 20 March 2012.
Our Feel-Good War on Breast Cancer by Peggy Orenstein criticising over-selling of the fear of cancer and the effectiveness of its prevention and treatment. The New York Times, 25 April 2013.
Reaching targets in the national cervical screening programme: are current practices unethical? A 1998 research article by P. Foster and C. M. Anderson about British national cervical screening program, which is very similar to Australian program. The authors found the program to be unethical and harmful. Many years passed, yet very little has changed in the way the program is run and women are treated. [+ Alternative link to the article]
Effect of pap smear collection and carrageenan on cervicovaginal human papillomavirus-16 infection a research about the dangers of pap smears: cytology screening in women might lead to a transient enhancement of susceptibility to HPV infection, Oxford Journals, Journal of the National Cancer Institute, 2011.
23 October 2012 update:
23 October 2012 Cancer Council Australia published new information on Australian cervical cancer screening program (http://wiki.cancer.org.au/prevention/Cervical_cancer). They have finally admitted that the current program is faulty and needs to be changed, they have also decided to reveal some truth about the harm and disadvantages of the screening.
Now, there is a big difference between what PapScreen and the rest of the System keeps pushing and what the Cancer Council admitted:
|The old hype and skewed facts still in use||Information finally admitted by the Cancer Council|
All women aged 18–70 who have ever been sexually active should have a Pap test every two years, even if they have had the HPV vaccine.
Australian National Cervical Screening Program will need to change as the HPV-vaccinated cohort ages to maintain its effectiveness and cost-efficiency. There is a substantial body of evidence that screening women younger than 25 years, and screening more frequently than three yearly, does not substantially reduce the incidence of invasive cervical cancer.
Australia’s two-yearly screening interval is conservative, with many countries recommending three years or more between tests.
Prophylactic HPV vaccination is expected to eliminate high-grade intraepithelial lesions and cancers attributable to HPV 16 and 18. Removing the most dangerous (and more cytologically-apparent) cervical abnormalities – and leaving behind the more equivocal ones – may reduce the positive predictive value of cytology (Pap-smears). In the era of HPV vaccination, as the population prevalence of HPV 16 and 18 falls, different screening tests and technologies need to be re-evaluated.
Pap test every two years is the best way women can protect themselves against cervical cancer.
No randomised controlled trials evaluating pap-screening have been conducted.
Cervical cancer is the second most common cancer in women worldwide.
This is because women in some countries don’t have access to Pap tests like we do in Australia.
Worldwide, cervical cancer is the seventh most common cancer, and the third most common cancer in women. Cervical cancer is the 13th most common cancer affecting Australian women. The estimated average cumulative lifetime risk of cervical cancer in Australian women with the current screening program is ~0.68%. However cytological screening (Pap) has not been as effective in reducing other types of cervical cancer, particularly adenocarcinomas, because of difficulties in sampling and cytological interpretation of glandular cells.
In Australia, the age-standardised incidence rate for cervical cancer declined by an average of 6.2% each year between the introduction of a national screening program in 1991 and 2002. Incidence, after halving from 17.2 new cases per 100,000 women in 1991, has remained at around nine new cases per 100,000 women from 2002 to 2008, for women aged 20-69. Mortality rates also fell by an average of 5.2% per year from 1991 to 2002. The historical low of around two deaths per 100,000 women has been sustained from 2002 to 2007. These gains can be attributed, in part, to the success of the screening.
Cervical cancer incidence rates halved between 1991, when Australia’s National Cervical Screening Program commenced, and 2008. Australia’s cervical cancer mortality rate also halved, from 4.0 per 100,000 population in 1991 to 1.8 in 2007, and is now among the lowest in the world. However in recent years, incidence rates appear to have stabilised. The majority of the decline in invasive cervical cancer in developed countries is due to a reduction in squamous cell carcinoma (SCC). In contrast, the incidence of adenocarcinomas has not declined, largely attributed to difficulties in detecting these types of cancer through cervical screening. In Australia this previously rare cancer now comprises around a quarter of all cervical cancers diagnosed.
Estimation of benefit from early detection on health outcome may be influenced by lead-time bias and length-time bias.
Lead-time bias refers to the apparent improvement in survival that is seen when screening advances the time of diagnosis without any change in the actual time of death. In this case, increased survival merely reflects a greater period of time that the individual is aware of the presence of cancer.
Length-time bias refers to the tendency of screening to detect a disproportionate number of cases of slowly progressing cancer compared with more aggressive cases. Rapidly growing cancers may progress from being undetectable at the time of screening to symptomatic during the interval between screens, and thus are less likely to be detected at screening or at an early stage.
Regular Pap tests can prevent around 90% of cervical cancers. A Pap test every two years could save your life.
No screening test is 100% accurate. Like all screening tests, the Pap test is performed on asymptomatic women. False positive results may occur. False negative results are common and vary across settings. It should be noted that accurate information on false negative rates for cytology against an independent reference standard is not available for Australia.
Even minor abnormalities can cause anxiety for some women. Women who receive false negative results may experience delays in diagnosis or treatment. False negative results may also create a false sense of security that may cause warning symptoms to be ignored.
If cervical changes are found early, they can be easily treated.
In addition to the inherent risks of surgical therapies, some treatments for cervical abnormalities are associated with adverse pregnancy outcomes including preterm delivery, low birthweight and perinatal death.
The tests may not be very pleasant but are designed to be as quick and painless as possible.
You may feel a little pain when the biopsy is taken: ask the doctor to tell you when this might happen. A biopsy can cause some bleeding or other discharge, but it usually heals quickly. Some women have pain afterwards, similar to menstrual cramping, which can be helped by pain relievers.
Abnormal test results can lead to more frequent testing and invasive diagnostic procedures. Risks associated with procedures such as colposcopy and cervical biopsy include vaginal bleeding, pain (sometimes severe), infection and failure to diagnose.
Sometimes, some types of HPV stay in the body. We don’t know why this happens in some people and not others; though things like smoking seem to make it happen more easily.
HPV can cause changes in the cells of the cervix. Depending on the type of HPV, these changes can become cervical cancer if not treated.
While HPV infection is necessary for the development of cervical cancer, it is certainly not sufficient. Worldwide, there are estimated to be about 100 million adult women who are infected with high-risk HPV types. This compares with approximately 530,000 new cases of cervical cancer worldwide each year. Cervical cancer is a very rare outcome in relation to the high prevalence of HPV infection. However, the risk of developing cancer increases significantly with persistent HPV infection.
Anogenital HPVs are the most common sexually transmitted infections. There are more than 40 anogenital HPV types, 15 of which are classified as ‘high risk’. High risk types can establish persistent infection and cause abnormalities which, in rare case, progress to cancer. A recent meta-analysis suggests some of these types have relatively low carcinogenic potential, and types 16, 18 and 45 are the cause of virtually all cases of cervical cancer worldwide.
It previously was thought that the development of cervical cancer involved progression from low to moderate to high-grade intraepithelial lesions (HSIL), but studies have shown that low and high-grade cervical lesions are distinct HPV processes. It is now accepted that low-grade squamous intraepithelial lesions represent acute HPV infection (high- or low-risk) rather than cancer precursors, most of which will resolve spontaneously within 12 months. Most high-grade abnormalities also regress over time, but regression takes longer. (Which means the women who had their cervix slashed and burnt for low-grade abnormalities done by the system “just in case” suffered for nothing.)
Pre-cancerous lesions (CIN3) occur when oncogenic HPV is not cleared, infects immature cells and prevents maturation and differentiation, resulting in the replication of immature cells and the accrual of genetic changes that can lead to cervical cancer. HSILs were indicated in 0.8% of cytology tests in Australia in 2009. Histologically verified HSIL includes the subcategory CIN3 or pre-cancer.
Women with persistent infections, especially with HPV 16, are at significantly higher risk of CIN3 and cervical cancer. Co-factors that increase the risk of cervical cancer progressing in women who have a persistent high-risk HPV infection include multiparity (more than five full-term pregnancies) and early age at first full-term pregnancy. Current cigarette smoking is associated with a significantly increased risk of squamous cell carcinoma, but not of adenocarcinoma.
The only way to detect cervical abnormalities is to have regular Pap tests.
Medical Services Advisory Committee assessed HPV triage testing for women with possible or low-grade squamous intraepithelial lesions in 2009, and concluded that compared with repeat recall cytology at one year, it is safe and effective but not cost effective in the Australian setting at the current price of HPV testing. (So it’s all down to money, regardless of how much better HPV testing can be for the patients.)
A large body of evidence, including data from randomised trials in developed countries, has shown HPV testing in primary screening is superior to cytology (Pap-smears), with greater sensitivity but lower specificity for high-grade abnormalities, and better reproducibility. HPV DNA testing in cervical screening detects high-grade lesions earlier, thus preventing more invasive cervical cancers. Using HPV testing also has the potential to improve identification of adenocarcinoma and its precursors. Given HPV types 16, 18 and 45 account for the greatest proportion of infections causing cervical cancer, new screening tests that provide genotyping are expected to improve risk stratification of HPV-positive women in cervical screening programs. For women who are cytology-negative but HPV-positive, HPV 16-positive or HPV 16/18-positive results are associated with medium-term risk of CIN3 or cancer. Women who test HPV negative are at very low risk for CIN3 and cancer for at least five years.
There have been some concerns raised about overdiagnosis with HPV testing because it has a lower cross-sectional specificity for high-grade disease when compared to cytology. However, a number of management options have been proposed to deal with this issue. Firstly, HPV testing should not be performed in younger women, under 25 years. (Is the age of 25 that new magical age, instead of 18, when cervical cancer suddenly becomes rampant?) Secondly, when used in primary screening, women who are HPV positive can be triaged using either cytology or partial genotyping, so that women are managed on the basis of whether or not HPV types 16, 18 or 45 are present. There are also a variety of newer emerging technologies designed to help triage HPV positive women to diagnostic evaluation.
Because of its high sensitivity and objectivity, there is growing support for the use of HPV DNA testing in primary screening programs. Primary HPV testing could allow future population-based screening to be determined by individual risk assessment. Adding HPV testing could enable an increase in the recommended age to start screening and a substantial extension of screening intervals. Recent research in other developed countries suggests primary HPV DNA testing (for high-risk types) could be cost-effective in unvaccinated women, if an appropriate triage procedure is used in HPV positive women and women are screened at an appropriate age.
You should see a medical practitioner to do the tests and prevent the cancer.
Studies show self-collected cervicovaginal samples show promising performance, with sensitivity that may approach that of physician-collected samples for HPV detection, supporting the potential use of self-sampling in primary cervical cancer screening. Self-sampling is highly accepted by women, with studies reporting most women found self-sampling devices easy to use, time saving, less embarrassing and more comfortable. Self-sampling could increase participation by women who do not participate in current screening programs. Randomised controlled trials and cohort studies in other developed countries have shown that offering self-sampling to women who did not attend regular screening increases participation significantly.
In addition, the Cancer Council agreed that “it is essential to recognise that an organised population approach to screening, which ultimately achieves a net health benefit to a community, can result in adverse outcomes for some individuals. ...As screening is initiated by ‘the health system’, individuals invited to participate must be informed, prior to any testing, of potential adverse effects as well as the potential benefits.”
Now, who is going to be responsible for all that harm, pain, anxieties, depressions, wrecked intimate lives and destroyed relationships, complicated pregnancies and lost babies that were caused by the unnecessary tests for no benefit? Nobody. It is the way the System normally works: it constantly goes though trial and error, claiming at each step it knows best. Only those who did their own research and questioned the System’s recommendations and guidelines could avoid the harm.
Usually, when the System admits its mistakes, that doesn’t make the System bad and those who have been confronting the System good. That makes the System even better: it made another improvement! While the ones who resisted, fought and forced the System to “improve” still can be called irresponsible, immature, silly and looked down upon. Unless one has a big name and authority, going against the flow is never easy. But it doesn’t mean one shouldn’t do everything to protect themselves, get the best treatment he/she (not the System) needs and contribute to the force that makes the System to correct its harmful mistakes. And, because there is no guarantee that the System got it right this time, it is still very important to stay vigilant and remember about informed consent: everything must be done only with your consent, and you must be comprehensively informed. It is your right, and, if it is also your choice, no one can deprive you of it.
25 July 2013 update:
“Breaking news” all over Australian TV channels and news websites: new research shows that Australian women are being subjected to far more Pap smears than necessary.
Oh, really? Who could have thought?! Apparently, Australian women are having too many pap tests and a “new” study shows it is “now safe” to move to 3-yearly testing. Now we are told the obvious, because in other countries it has been known since the 1960s that the over-screening does not provide any additional benefit, it only increases the risk of a false positives. It shows how slow, dated and self-conserving Australian medical system is.
The “news” contain not a word about the over-treatment that has been caused by the current level of over-screening, neither they say anything about the ongoing research into Gardasil that requires the continued pap-testing of all teenagers and young women. The medical system has always known that women were being urged and pressured into serious over-screening, known that it provided no additional benefit (except for keeping day procedures full)… and done nothing about it for decades. All that was available were pathetic brochures and scaremongering. The ABC TV news story, of course, had to have a woman with some small kids — as if women don’t exist in any other context — and, of course, she was talking about how the screening saved her life. The new recommendations are expected by the end of 2014, until then, stay with the 2-yearly overkill.
The sad thing is that, 3-yearly pap-testing from 25 to 70 is still a serious over-screening, and still outdated. Most women over 30 are HPV-negative and can’t benefit from pap-tests. Australian women who trust this program will continue be subjected to over-screening and massively harmed. This looks like nothing more than a game to delay, delay, delay changing the program. Are too many enjoying the political Brownie points or the profits from the damage and misery this testing causes to huge numbers of women?