Consent and the LawTHE "FAMILY PLANNING AND CHOICE PROTECTION ACT OF 1997": Freedom of Full Disclosure on Reporductive Information
Defining Consent: classic judicial statement of a person's right to consent
1993/05/05; NIH Testimony: National Institutes of Health
If There Are No Side Effects, This Must Be Honduras : Examples of informed consent around the world.
Q. Why are women not told prior to a tubal that this may happen to them?
A. That's a good question. The whole tubal issue could be compared to the cigarette issue. When cigarettes first started being sold commercially they really didn't know if cigarette smoking could cause problems, in fact there was a time when cigarettes were sold as a cure to breathing problems!
In the 50's, Cigarette companies started to do some health studies. Their findings did not support the though that cigarette smoking was safe at all, but they continued to sell cigarettes and they hid away their information and kept their findings private. A code of silence was created.
Doctors have been doing tubals since the 20's. During this early period of tubal history doctors really didn't know and thought that the procedure was safe and had no side effects.
To date, "some" research has been done on tubals and their side effects. (If this was a mans operation more research would have been done to date) Some of these studies and findings have been made public, while others are probably still hidden away. The medical community knows a lot more bout this issue (tubals causing hormonal imbalances) than they lead us to believe.
Most public findings show evidence of side effects and hormonal changes and publicly state that the tubal surgery is the cause. But then there are a few amiss studies that say they don't see a change, and theses are the studies that doctors refer to when stating that the issue of PTS is disproven.
Q. Can you give me an example of one of these amiss studies?
A. One example of a study was researchers measured the "average" volume of period blood flow after women had tubals. Considering what we know today, that some women don't suffer a hormonal change and their periods would remain the same, that some women do suffer a hormonal change and may have heavier periods or in some cases their periods stop, it makes sense that the "overall average of blood flow volume" didn't change. What they don't tell you is some remained the same, some women have extreme periods, and to counter that a few women's periods stopped.
Q. So these research studies that disprove tubal side effects are in question?
A. Yes. It's chicanery for doctors to state when asked about PTS that, "research has been done and it's been disproved". It hasn't been disproved at all. There just happens to be a few studies that show that no change was noticed. If these doctors know about the few studies that so-call disprove or "show no change", then they also know about the many studies that do show change.
Q. So why are women not told about this very serious side effect prior to the operation? Does the gag rule apply here?
A. No! This is not a life or death procedure. This procedure is "elective", and something that is being suggested and sold to women to "enhance" their life. Women are not being told for the same reason cigarette companies didn't tell, because if people (women) knew many wouldn't buy (agree to) the product (the surgery)! Women are not being told because if they are told then they "may" opt not to have the procedure and the doctors would be out of a pay check..
Q. Shouldn't women be warned?
A. Yes! But they are not. Doctors who do tubal surgeries want you to have the surgery because that's what they do. That's part of their living. They feel protected because they have women sign a "consent" from.
Q. What's in the consent?
A. These documents are very vague are not detailed as to what was told to them, just that they were "informed of the risks", which usually means they were informed of the known risks of the anesthetic, and giving consent to open them up further if a problem does arise. Most women are told of the "rare" risk of the tubal "failing" and becoming pregnant.
Women are not being told of the "not so rare" condition of PTS as being a side effect of the tubal surgery. Women need to be told that in addition to the tubal "failing" that there's an even greater chance (10%) of her developing PTS. Further, she needs to be explained what PTS is, and what it mean for long term health if she does develop it.
This information is very important to have when a women is making the decision as to weather she wants to have the procedure or not. If she isn't told then she really isn't giving consent.
Q. This doesn't sound right. Why does this non-consnet continue? Has anyone ever sued?
A. No one has ever challenged this issue. There are not clear cut laws in place to protect women regarding informed consent with tubals side effects. We are told there are no side effects! As with any surgery, Doctors are told that they must "inform" and get consent but as to what is not clear. Doctors inform about the risk of the tubal "failing" and the possibility of getting pregnant, but even though doctors know that PTS might happen they do not warn. There's no laws stating exactly what they have to tell you even though their own "Hipocratic oath" tells them they should warn.
Women have sued for tubals that have "failed", meaning they got pregnant after a tubal, which happens to be a well known "rare" risk of a tubal that doctors do inform tubal candidates about. It also happens to be on condition that doctors can't ague on. If a women gets pregnant after a tubal then the tubal failed.
What is not rare is women suffering PTS after a tubal, but yet to date no one has ever sued based on the fact that they are suffering PTS and was not informed of this hormonal side effect prior to the surgery.
Q. How can this happen? Why does it continue?
There's a code of silence in the medical community. Doctors work hard to get through school and build a practice. Doctors don't want to "publicly" say that another doctor, in the same field, did an operation in the wrong manner, missed a diagnosis, gave improper consent, etc... Most Doctors, even if they know the other doctor was wrong will not step forward. One for all and all for one. If a doctor in the same line of practice gets sued, doctors feel that it reflects on the whole practice because they are in the same line of work..
Doctors who do step forward are considered "while blowers" and are put through the mill by the defense medical experts and are tried to be shown uneducated and negligent themselves. These "whistle blowers" are put in the place of defending themselves as if they are on trial. These out spoken doctors are also often shun by their colleges for speaking out and breaking the code of silence.
So what's worse than a doctor stepping forward on a issue of one other doctor practicing in a negligent way? The answer is one doctor stepping forward and stating that the "whole" medical community is practicing in a negligent way, which seems to be this issue when talking about tubals, informed consent, and how women are treated when they return to their doctors complaining of problems.. Doctors who step forward on issues such as this risk losing everything they've work for.
Doctors are not stepping forward on this issue. In fact, they won't even publicly discuss the issue. See the following letter that was "removed" from OBGYN.net. Instead of addressing the issue, they simply re-moved it. The writer was also ban form posting there again. They just simply will not discuss the issue.
The letter exposes how women are treated when returning complaining of PST. It also suggests that maybe women should have their levels tested before a tubal and doctors don't want this to happen.
Date: Thu, 25 Jun 1998 23:39:05 -0500
It truly amazes me that in this day and age, 1998, with all that doctors know about Post Tubal Syndrome, about how the blood supply to the ovary can be and does in many cases become compromised during these "simple" surgeries, and knowing what would happen to these women in terms of long term health if this does happen, that she isn't informed of this "risk" of the tubal surgery and the "true" side effects that can develop. Doctors who don't discuss these issues with women prior to this type of "elective surgery" are not getting "true" informed consent from these women.
Women need to know that if blood supply is compromised that she may fall into Post Tubal Syndrome. This happens to about 10% of women who have tubals.
If she develops PTS she may experience labor type cramps with her periods, have extremely heavy periods which may include passing large clots and tissue.
Besides the pain and discomfort of the heavy bleeding, it can also lead to a major loss of iron and aniema.
Some Doctors agure that going off the pill is mostly the cause of the heavy bleeding seen in some post tubal women, but this heavy bleeding happens to women who have been on the pill and to women who were not after a tubal. Also, there is nothing to back this up,... drug companies who make birth control pills do not list this as something that happens to women when they go off the pill.
It seems that many Doctors want to simply perscribe birth control pills when women return complaining of these type of problems after a tubal. If the Doctor doesn't check the proper hormones levels then he is "guessing" that the women is suffering from an estrogen defiency because of blood supply being compermised to the ovaries. They are perscribing birth control pills to "balance" this deficiency. The only thing is the pill was made not for women who are "estrogen deficient", but for normal healthy women with normal FSH and LH levels for the purpose of birth control, not for the purpose of HRT. These doctors are prescribing the pill without even knowing what FSH and LH levels these women are at. If the women are approaching menopausal limits other HRT may be more appropriate and "safer" than the pill.
Another thing many Doctors do is to order these women "thyroid" tests. If these tests come back "normal" many Doctors simply just put the women on the pill with out further testing or explaination. Why? They've already admitted that there is a problem by ordering the thyroid test, if that test comes back normal why wouldn't they other tests to be done such as a FSH and LH test. These women should be ordered "complete" blood tests and should have a throughal evaluation of all their levels as "standard care". If she is suffering from an estrogen or pergestrogen deficiency she needs to know this and should be given other options of HRT besides birth control pills.
Another issue with estrogen deficiency is as we all know is bone loss. Doctors should suggest that a base line bone scan be done "before" any and all tubal surgeries, as well as FSH and LH levels drawn, so a comparison can be done after the tubal if these women do begin to experience problems.
Doctors should not only warn of an estrogen deficiency as a possbile side effect prior to a tubal surgery but should also explain the symtoms that would accompany this condtion. Only then when she fully understands about this possible complication and how it could affect her health will she be giving "true" consent to this procedure.
Women need to understand that an estrogen defiency is a possible side effect of a tubal surgery and that it is the same type of "hormonal condition" and has the same symtoms as being peri-menopause or menopause. They need to be informed that being estrogen defienct can cause the following symtoms. This list can also be viewed at: http://www.howdyneighbor.com/menopaus/symptoms.htm
1.Hot flashes, flushes, night sweats and/or cold flashes, clammy feeling, chills
2.Bouts of rapid heart beat
4.Mood swings, sudden tears
5.Trouble sleeping through the night (with or without night sweats)
6.Irregular periods; shorter, lighter periods; heavier periods, flooding; phantom periods, shorter cycles, longer cycles
7.Loss of libido (see note)
8.Dry vagina (see note)
10.Anxiety, feeling ill at ease
11.Feelings of dread, apprehension, doom (see note)
12.Difficulty concentrating, disorientation, mental confusion
13.Disturbing memory lapses
14.Incontinence, especially upon sneezing, laughing; urge incontinence (see note)
15.Itchy, crawly skin (see note)
16.Aching, sore joints, muscles and tendons (see note)
17.Increased tension in muscles
19.Headache change: increase or decrease
20.Gastrointestinal distress, indigestion, flatulence, gas pain, nausea
21.Sudden bouts of bloat
22.Depression (see note)
23.Exacerbation of existing conditions
24.Increase in allergies
25.Weight gain (see note)
26.Hair loss or thinning, head, pubic, or whole body; increase in facial hair
27.Dizziness, light-headedness, episodes of loss of balance
28.Changes in body odor
29.Electric shock sensation under the skin and in the head
30.Tingling in the extremities, (see note)
31.Gum problems, increased bleeding
32.Burning tongue, burning roof of mouth, bad taste in mouth, change in breath odor
33.Osteoporosis (after several years)
34.Changes in fingernails: softer, crack or break easier
Symptom 1 (flashes) Hot flashes are due to the hypothalamic response to declining ovarian estrogen production. The declining estrogen state induces hypophysiotropic neurons in the arcuate nucleas of the hypothalamus to release gonadotropin-releasing hormone (GnRH) in a pulsatile fashion, which in turn stimulates release of luteinizing hormone (LH). Extremely high pulses of LH occur during the period of declining estrogen production. The LH has vasodilatory effects, which leads to flushing.
Symptom 7 (loss of libido) For some women the loss is so great that they actually find sex repulsive, in much the same way as they felt before puberty. What hormones give, loss of hormones can take away.
Symptom 8 (dry vagina) results in painful intercourse
Symptom 11 (doom thoughts) includes thoughts of death, picturing one's own death. Feelings of complete dispare.
Symptom 14 (incontinence) reflects a general loss of smooth muscle tone
Symptom 15 (itchy, crawly skin) feeling of ants crawling under the skin, not just dry itchy skin
Symptom 16 (aching sore joints) may include such problems as carpal tunnel syndrome
Symptom 22 (depression) different from other depression, the inability to cope is overwhelming. There is a feeling of loss of self. Hormone therapy ameliorates the depression dramatically.
Symptom 25 (weight gain) often around the waist and thighs, resulting in 'the disappearing waistline'
Symptom 29 (shock sensation) "the feeling of a rubber band snapping in the layer of tissue between skin and muscle. It is a precursor to a hot flash"
Symptom 30 (tingling in extremities) can also be a symptom of B-12 deficiency, diabetes, alterations in the flexibility of blood vessels, or a depletion of potassium or calcium
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