GP Dr Margaret McCartney’s article “Why I'm saying no to a smear”, in the Independent this week brought up some interesting points and discussion about knowledge and power in medicine.
Dr McCartney was making her own point of view public that, knowing about the risk/benefit analysis of cervical smear testing, she personally did not find it an expedient choice. She said:
“most cervical-cell changes found at screening will not lead to cervical cancer. The problem is we can't predict which will, so all need further monitoring or treatment. A study from Bristol in 2003 found that 1,000 women have to be screened for 35 years to prevent one death from cervical cancer; and to prevent that death, 80 women have to have further investigation, with 50 women having treatment to their cervices. Four out of five women found at screening to have "high-grade" changes in their cervix did not go on to develop invasive cancer.”
Whilst I found the article refreshing and informative, there were commenters who felt that Dr McCartney, by sharing this information, was being less than responsible:
“As I said before a Dr has a high level of education in health matters and can make informed decisions. Others that do not may be influenced and make the wrong decision.”
I've heard this kind of argument before, specifically in NICU (Neonatal Intensive Care Unit) where I was actually told that if my mothering was 'too good' then it would make the other mothers feel bad. That's about on the same level as my friend and colleague Keith, who was summoned into an NZ school office to be told that his daughter was causing a problem in the school because she was 'too popular'.
Are we saying that because Ms McCartney is a doctor, that she's not entitled to a personal opinion, or to express herself about it, or share the factual information that created it?
If everyone who is informed, and who feels like her, keeps quiet about it, aren't we just diving head-first for the lowest common denominator, and assuming that only doctors are really able to think at all?
Why was I in NICU at all? Because my daughter was born at 24 weeks, and thanks to modern science, is an astounding miraculous micro-premie.
But Dr McCartney’s article gave me some information I wasn’t expecting:
“It's known that having a cervical biopsy – which is done to get more information about the degree of abnormality – raises the risk of pre-term birth in later pregnancies.”
Why was my daughter born premie? Well nobody could tell me, but co-incidentally I did have a cone biopsy in my late twenties. Any connection? Who knows?
I had two children before that weren't particularly early as to be really premature, but on the morning of the day my third daughter was born, a scan showed almost total effacement of my cervix, for no reason that has ever been supplied to me.
Nobody has ever formally made this connection to me before, between cone biopsy and prematurity, although it was been a pre-occupying worry of mine through both previous pregnancies. So I’m personally grateful to Dr McCartney for that.
But on the subject of screening I can remember so clearly the wonderful Fiona McCluskey from the local Well-Woman organisation, who, a year after the cone biopsy, eventually helped me to recover from the trauma of the diagnosis, the experience, and the awful guilt I felt on being told following the operation that what had caused the cell changes was 'sex'.
This episode marks the point where my questioning and exploration of our own attitudes to health began to form a part of my feminism in a very real way.
Having moved to alternative Bristol, I was mixing in a community that was very connected with holistic ideas about health. Such ideas included the premise of self-responsibility in health, and this became problematic for me because after the doctor told me that it was sex that had caused me to have pre-cancer, I received this in an accusatory way, and felt a huge weight of guilt that I had done this to myself by having sex.
It's pretty hard to see health as a state of guilt - the natural consequence of feeling responsible for your own health whilst also at the same time feeling completely dependent on outside forces to be able to do anything about it. It's certainly the opposite of empowerment.
The danger of this kind of disempowerment was pointed out on the article by a commenter:
“It is normal for young women to have abnormal cells on their cervix. Testing women under 25 or 30 years of age produces a very high number of false positives and abnormal cells - cells which; in 95% of cases; will clear up on their own and never needed treatment in the first place. It is women clinging to the belief that they were 'saved' by their pap smear at a young age which is helping to drive the pap smear regime.”
When I found the Well-Woman service and met Fiona, she encouraged me to consider doing a self-examination and she stayed with me while I eventually dared to look at the part of myself that had been 'doctored', because of sex. People are not statistics, statistics only represent people.
It was a supremely empowering action and I will forever remain grateful to Fiona for opening the door that allowed me to own my body in an entirely new way. I later received a second diagnosis of abnormal cells and I chose not to go down the medical route at all, but made some mental effort to attend to my whole health, and a few months later went back to the clinic and had a second clear test. And clear tests since then.
Fiona also showed me a study from Glasgow, providing evidence that the way to lower the rate of women dying of cervical cancer, was to treat women with cervical cancer, and that knowledge was another part of the door opening, to dropping the burden of guilt which the doctor had casually placed upon me.
Reading these statistics, I remember the guilt seeming to physically drop away, as I realised the reality that this procedure, where a large part of my most intimate cervix had been cut away “because of sex”, had probably not only not saved my life, but may have been totally unnecessary.
I could move on.
There is no damn point in fighting to save the NHS but allowing people to be kettled into medical pens for actual treatment or any other kind of initiative as dumb fodder.
I read Dr McCartney’s article as a statement of the same principle. Medicine’s responsibility for always seeking to do the least harm, and our ability to be responsible for our own health are inter-related and neither can succeed without the other. Information is the largest part of that.
Criticising a woman for expressing her own well informed personal point of view, just because she is a doctor, is heading in the direction of censorship. It's the wrong direction.
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It's harder work to develop the kinds of open communication skills we need to avoid having to censor valuable information, but it’s great that people are trying - as in this video “birth-trust” of a conference which asked the question “Is it possible for the medial and holistic models of birth to join?”