Your health, your body — your right, your choice
How to get health care that is best for you
20 January 2012:
I would like 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 care. It is for those thinking individuals who are open to questioning the position in which patient’s privacy, benefits and involvement in own heath care is put by the modern medical establishments.
If you are absolutely happy with the health care in your country, totally trust every doctor’s decisions, are not willing to question any medical treatment or assess your risks and conditions, and believe that everything the medical system does is always for your personal good, then you are a very lucky person who does not need to read this.
For all the others who are not that lucky, including myself, I would like to share my thoughts. 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 clear distinction between common and 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, sometimes, literally painful example.
Long story short
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 decision-making process during their treatment. This is also an illustration of “privacy” in medical area: the patient has lesser 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 private information is disclosed, where it is stored and for which purpose it is used.
(The picture is derived from a slide of Australian Healthcare Identifiers Service presentation)
How the medical system should work (whenever the patients are willing to take part in their own heath care).
The System should realise that the patients must be the centre of it, and that they are the sole reason why the System exists at all. 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 “researches” and “programs” on why the patients don’t trust their doctors, lie on medical appointments, turn to alternative medicine, avoid check-ups, delay with visiting doctors even 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 infected with superiority and paternalism. When the System becomes transparent, friendly, and gives the patients the power to decide and control what is happening to their information, privacy, health and lives, it will get the people’s trust and openness in return.
Ask, choose, decide
There are two types of people. There are the people from the individual point of view: we see them in ourselves, our friends, colleagues and loved ones, all different, all with their quirks and virtues, joys and problems. And there are the people from the point of view of the System: they look like numbers, all same, counted and statistically averaged. There is 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 there is the health of each individual.
Everyone is a whole individual and, at the same time, 0.00000005 of the population. (0.00000005 is in a 20 million people country; if you country is larger, give yourself even a smaller fraction.)
What is the problem? The problem is that 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 that is equal to the average result 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.
So, there is the health of the population and the health of individual. They can be very different, but the System cares about the population, because it has no resources to care of each individual.The doctors are trained, controlled, employed, paid and protected by the System; they are also punished by the System if something went wrong while they were not doing what the System wanted them to do. Doctors have to treat their patients as the System knows best: as if they were 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 of every new health problem, by default, starts in the path of System’s guidelines. It is safer for the doctor if something turns bad. 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 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. The powers that be in medicine prefer looking at data rather than real people.
Unless you are rich enough to have a personal doctor, no doctor can have enough time thoroughly investigate all aspect of every condition of your health. And not every doctor has enough courage and experience to adjust the System rules for every case. If the doctors can’t and won’t, 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 patients know 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 the 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 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 incomplete truth to level the different people, skewed facts or scaremongering to push anyone into any screening or treatment.
Unfortunately, very often the information the patients receive by default is put together to make everyone to obey the System, not to inform, give a choice, and offer options; the patients are told rather than offered. The process of using the information gathered from the patients is not flawless either. Private questions are asked, presumptions are made, no explanations are given.
For example, the usual question: what’s your marital status? Whatever you answer, the doctor will make some 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 side is to ask the health-related questions directly, and only in connection with whatever health problem the patients are seeking 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.
What is your occupation? Again, a pile of presumptions. Let alone the things 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 a month 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 gathered, used and misused at the System’s discretion. The System doesn’t have time and 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 and what for.
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 me harmful and was abolished! Ask the doctors: what are my personal risks? do I really need this preventative measure? 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 are sure 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, 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 normal for a patient to question, know, decide and choose. 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 our own health and body, feel that you are treated like 0.00000005 instead of 1, you have to step in.
The System is not considering every individual, it is concerned how to:
1. Have reasonable performance in most cases.
2. Spend minimum resources.
3. Protect itself.
In other words, the System does not care about you, it cares how to keep the largest number of taxpayers satisfied while earning more, spending less and covering its back. 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. 95% sounds good, but only until you turn out to be one of those 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, what is no lees important, it covers the System’s bum: 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 just 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 make 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? Here is an answer:
... 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 outcome statistics. Would you like to do it?”
I am not saying that everyone should refuse biopsies. What I am saying is that the patients must be told the truth, all of it, about all the benefits, side effects, and dangers of anything that is offered to be done. They should not be told “its virtually painless” when it is damn painful, they should not be told “its safe” when it is safe in most cases. Often, you have to sign your consent after being told that the procedure is safe and necessary. But try to ask that very 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 “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, but you also have a right to protect your health and your life. You have only one, and you cannot afford to settle for the option that is cheaper, better and safer for the System. It must be better for you.
Or take the latest obsession of Australian medicine — pap smears. Did anyone’s doctor explained 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 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 psyche of the girls. 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. 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 the Australian women told any of this? No. They are just pestered to lie on their back with their legs spread open and scaremongered that if they don’t do it, they will get the cancer. 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 those who is married to their high school sweetheart; which means that the first category may truly need the 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 or needs and 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. As to the damaged souls, there are psychologists, which the System can conveniently offer, though they are not covered by Medicare.
Then, these Pap Smear Registers. After a woman submits to propaganda and does the pap smear, her personal details together with her tests results are automatically passed to the register, saved in their database and used for their researching, statistical and self-promotional purposes. Another function of the register is to bombard the woman with letters and reminders when they think she should have another pap smear. They will also contact the woman’s doctor, to warn that the doctor is not brainwashing the woman well enough because she doesn’t want to lie on her back when the System tells her to. Luckily, the woman still has the right to opt out of such tender care if she doesn’t want the whole organisation to stick its nose 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 — the register has you. It is disgusting, like any opt-off arrangements! Any service, especially the one dealing with private matters, must be strictly opt-in. But the System knows that there are not that many women eager to give their privacy away and be nudged “for their own good”, hence the opt-off only.
“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 it is beneficial and where exactly that “own good” is going to be in the long run. “For our own good”, says the system, which for decades, from 1950s to 1970s, coerced unmarried Australian women to give up their newborn babies for adoption, the system, which 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. Some were sedated. As a result, the women have suffered immense emotional distress throughout their lives. The system thought that such pain was an appropriate punishment for the women’s immorality because of falling pregnant. At the same time, the system made birth control difficult to access and termination of pregnancy illegal. Undoubtedly, all for someone’s own good, too. Nowadays, the system is 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 “our own good” it imposes on us today?
So, the moral is, if we don’t stand for ourselves now and just allow anything to ba done to us, all we can get is an apology, some time in the future, at best.
The System deals with millions of lives. It can afford to lose a few for the common good. It will be the lives of those who are so far from the System statistical average that the “averaged” treatment will 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.
P. S. Some may say that Australian health care is perfect as it is because Australia has one of highest life expectancies in the world. However, it has to be taken into account that Australia intakes over 150 000 migrants every year (2010–2011 fin. year — 168 685 migrant, 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 granted entrance to Australia if there are any serious or any potential serious 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.
Beware of lies and partial truth
It is appalling and angering to see how many patients are put through extremely painful procedures without being accurately informed of what to expect, how many the doctors and nurses who are misinformed about the potential pain involved – and those who do nothing to properly prepare their patients. 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 downgrade the pain 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 to treat the patients in the same manner?
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 way worse by treating the patients like they are just a big wuss and making them guilty for screaming, crying and 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”!
Also, biopsies performed for small or mild abnormalities decrease the patient’s chance to recover without invasive treatments. No one tells the women about that either.
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, do not wish to sped extra time for each patients, or simply cannot be bothered. Proper pain management may also be considered too costly and not offered under national health schemes, because the aims of these schemes are to prevent development of the diseases that are even more expensive to cure and 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 can be 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 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 necessity of any procedure. Make sure that the offered procedures are really necessary. Ask how 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 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, and the necessity and reliability are overstated.
As a doctor I knew (who has never gone to see another doctor as a patient) jokingly noted: there are no healthy people – they are just underscreened.
Access, know, assess, control
Even if if they are allowed, 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 regarding the patient.
Hidden medical records, sealed envelopes marked “to be opened only by the referring doctor”, delivery of pathology reports and other diagnostic test results from laboratories to doctors bypassing the patients are the frequent practices that diminish patients evolvement in their health care and making informed consent nearly impossible. How can one make a truly informed consent if the information may be unavailable, incomplete, distorted, of 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, or not. 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 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?
There are a few “reasons” the medical system exploits to keep patients informed and involved in their health care as much as their doctors decide:
1. The medical system is afraid of lawsuits.
If so, then it should consider 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 lawyer or an accountant, but everyone has to read those documents, must obey the law and pay taxes. Most people weren’t trained to be car mechanics, but they are allowed to open the bonnet of their own cars and familiarise themselves with everything they can find in there.
3. Patients may have undetectable mental conditions, high level of ignorance, or be easily frightened, so it is better to impede everyone’s access to medical details.
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, 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, state or fearfulness of some patients must not wipe out the right of everyone else to full information about their health and the risks of medical procedures.
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 scary 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.
It shouldn’t be a surprise for the system that there are many people who are knowledgeable enough to make some sense in medical information and who want to be allowed to make that sense. If it turns out too difficult, they will ask their doctor more questions. 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 run from GP to the specialist/ laboratory/ scanning/ etc, 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.
Denying information to the patients, allegedly “for their own good”, is a very grave insult to human dignity.
An enhanced version of the diagram above representing the flow of the medical information. At times, despite the caption in the first slide, it is very far from “working together”, if by “together” they mean together with the patient. Note the one way information flow from the patient to the system. Very often, the patients are pushed to give away very private information with very vague explanations or without any explanations what this information is needed for, how it is going to be stored and used, and who it will be shared with.
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.
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