Cervical screening and the quest for informed consent

Cancer screening – a mini rant that turned into a big one.

I must declare an interest and a bias here. My father’s had prostate cancer (not found through screening, admittedly) and I had surgery to remove pre-cancerous cells on my cervix last year. My very first screening for cervical cancer found dangerous cells that, had I left them, could have meant I went the same way as Jade Goody.

Four days ago, Jo’s Cervical Cancer Trust released this press release,

Leading national charity calls for urgent action in approach to anniversary as ‘Jade Goody effect’ goes into reverse

Jo’s Cervical Cancer Trust is calling for urgent action in the approach to the anniversary of Jade Goody’s death as latest figures show the dramatic surge in numbers taking up a life-saving test she is said to have inspired has not been maintained.

Three years on Jo’s Cervical Cancer Trust says the so-called “Jade Goody effect”, when cervical screening rates rose for the first time in a decade, has all but disappeared.

Every three hours a woman in the UK is diagnosed with cervical cancer and every day it claims three lives – yet the disease is preventable. The UK’s NHS cervical screening programmes save around 5,000 lives every year but recent figures show one in five women overall fail to attend with figures worse for those under 35 with one in three not taking up their invitation.


So you can imagine my surprise when today I read in the Independent (after a tweet from @mgtmccartney, the writer of the  piece, lead me to it) this article: http://www.independent.co.uk/life-style/health-and-families/features/why-im-saying-no-to-a-smear-7577967.html

“The NHS persists in sending me red-ink letters despite my written declaration to opt out. I’m made to feel a risk-taker in not having cervical screening – yet I’d also be taking my chances if I had it done.”

I agree with her points – the NHS shouldn’t be sending her letters if she’s decided to opt out. But really, a red ink letter? So what? To defend herself against my accusation of being irresponsible, she said

I think this is over-stating things. We are autonomous beings – a letter penned in red ink can be easily shredded and forgotten about. It might annoy, but for some women, it could save their life. No one is saying you have to have it.

“That potential for good has to be weighed against the risks of treatment. 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. “

– this is also true. Women should be told the consequences of having a biopsy done and I’d NEVER argue against informed consent. Unfortunately the tweets that were sent out afterwards from the writer, including me, seemed to say that I was opposing women getting the info they need – that’s not true.

“I weighed up my personal risk factors for cervical screening (for example, smoking is a risk factor), threw in my own priorities – and decided not to have it.”

This is fine and dandy – for her. But smoking is not the only risk factor for cervical cancer. (From NHS website):

“Changes in the cells of the cervix are often caused by the Human Papilloma Virus (HPV), which also causes genital warts. There are more than 100 different types of HPV. Some types are high risk and some types are low risk. HPV-16 and HPV-18 are considered to be high risk for cervical cancer.”

Margaret McCartney goes on –

“Most information sent to us, as potential participants, doesn’t make clear that it’s a personal choice, and a balance of pros and cons.”

– Again, I absolutely agree that information should always be given, but that information should also be balanced with the risks of cervical cancer. I was given lots of information when after the results of my screening came back. In fact, the NHS website says your doctor will discuss this with you:

“If any changes are found, your GP will discuss with you whether to wait and see if the changes go away on their own or whether you need treatment […] In the UK, it is estimated that 8 out of 10 people are infected with HPV at some point during their lifetime. For most people, the virus goes away without treatment and does not cause any harm. […] If your results show abnormal cells, you will be sent for screening every six months to monitor the cells. You will only be given treatment if the cells do not go back to normal. If your results indicate more serious cell changes such as these you will have a colposcopy to investigate further. A colposcopy is a procedure where the surface of the lining of the cervix is closely examined.”

– none of these procedures cause any harm to the cervix. The colposcopy is simply an instrument to have a good look at the cervix. It’s true that a biopsy will sometimes be done during the colposcopy, but you’ll be told about this before it happens.

Many women don’t take up their invitation for cervical screening and I think the reasons they don’t are probably not because of their fears about the health impact. This article, from June 2011, says that up to a fifth of UK women don’t attend their cervical screening test at all.

“About 1,000 women die of cervical cancer in the UK annually.”

“But experts estimate screening saves at least 4,500 lives a year in England alone.”

“The research, released to mark Cervical Screening Awareness Week, appears to suggest that many of those who have missed or delayed appointments for cervical cancer screening are doing so because of inconvenience, embarrassment or worry about taking time off work.”

Encouraging people not to even go (after all, the initial screening test won’t lead to the harm that Margaret McCartney talks about) is, to my mind, irresponsible. There’s no harm in having the information available that might lead to your death. Margaret argues that we should be informed better – I agree and take this to its logical conclusion – we should be informed about the risks of NOT doing anything about the pre-cancerous cells that lurk in our lady parts. After all – if we don’t know they’re there, then we’re not informed at all!

Margaret McCartney provides no evidence that women aren’t being informed about the pros and cons of these procedures – she includes information about those who are given info on a separate test and refuse it – prostate cancer – which is another post entirely – in fact I could write a book about that (with help from my expert mother who strived to learn all she could about my Dad’s cancer and treatment). I was talked all the way through my procedure and gave my informed consent to what might mean I have a difficulty pregnancy or even pre-term birth. Obviously, my experience doesn’t speak for all patients, but there’s little evidence here that women aren’t being informed. But they can’t be informed if they don’t even go!

I agree 100% that information about the risks of a biopsy should be given, but a female doctor writing in a national paper about not even bothering to have the initial information about whether she’d even need further treatment seems to me, irresponsible.

Her very profession puts her in a position of authority – perhaps meaning that women will take her advice as read and not even look into it – it’s a sad fact that people often don’t read a whole article, especially if they’re on their way somewhere or get bored half way through (not a comment on the piece – it’s very well written!). Without seeing the nuance (which there is in the piece) the message is – doctor says not to bother.

As one of the commenters on the article says:

As a doctor you are in a very informed position and can make such decisions with more accuracy, to glibly put that responsibility on people without your training is perhaps optimistic.

It’s yet another excuse for someone who’s frightened, embarrassed or just too busy to have a smear not to bother at all. Now who’s uninformed?