To tell or not to tell – what should we do?

The clinical director of the Irish national cervical screening programme Ireland, Dr Grainne Flannelly, resigned at the end of April. It was revealed that she had failed to ensure that a woman with cervical cancer was told that on a retrospective review of her cytology test it was determined that abnormal cells had been missed. At first it sounds as if this resignation was appropriate, but the situation is much more complex. Whatever the rights or wrongs of this particularly case, it is a tragedy not only for the unfortunate lady with cervical cancer, but also for all women in the Republic of Ireland. Grainne Flannelly had done more to ensure that the cervical screening programme in Ireland was a success than anyone else. She lobbied hard for the introduction of a cervical screening programme in Ireland before it existed and ensured that high-quality treatments were available to all who screened positive. Thanks to her there are probably hundreds of women alive today who without screening would have died from cervical cancer. And the best part is that they don’t even know who they are, because cervical screening detects pre-cancer that can be easily treated thereby preventing cancer and the need for surgery, radiotherapy or chemotherapy.

Cancer screening is generally not intended to spot 100% of those with disease. Because it is offered to people without symptoms in whom fewer than one in a thousand will have cancer it is very difficult to get a very good test. To find 99% of those with disease one might end up saying that 20% of the population would have tested positive. That would cause huge anxiety and would probably not be affordable – we simply do not have the resources to have 20% of people seen by a specialist and offered expensive further tests to determine whether they have cancer. So, most cancer screening tests miss some proportion (typically 5%-30% depending on the test) of the disease that they are designed to pick up. These “false negative” tests are not examples of gross negligence, they simply reflect the fact that our screening tests are not perfect, and that even imperfect screening tests can do a huge amount of good.

To make sure that the false negative rate is not greater than anticipated and to learn from missed cases, it is good practice to audit what went wrong whenever anyone gets (or dies from) cancer despite participating in a screening programme. If the programme is designed to prevent cancer then if we only review the tests of individuals who get cancer, we are  only ever reviewing cases where something has “gone wrong” so it should not be surprising that in many such cases abnormalities will be found on review.

Photo by Pablo Heimplatz

The audit might determine that the cancer happened despite screening being done well, but it might determine the cause of the cancer to have been “that the patient ignored recommendations to see a specialist following a positive screen” or that “the screening test two years ago was reported incorrectly”. For cases where it was reported incorrectly, there is a question of whether it was a case of negligence or simply a poor decision in a difficult case to call. In such cases, what should the patient be told? When should they be told and who should tell them?

There are no universally accepted answers to these questions. Different countries have different policies, and some have no policy at all. In all of these cases, the review has been done because the individual has got cancer, so it is too late to change their care. In one case, a consultant found out three weeks before a woman died that there had been mistakes  made with her cervical screening test. He decided not to tell the patient at that time. He thought it would cause more harm than good. When the husband found out after his wife had died, he reacted angrily “It wasn’t his decision to make”.

In the past medicine was very paternalistic. The doctor would make decisions on behalf of patients without even discussing things with them. That has changed, but there are still different views about disclosure of results from a retrospective audit. In Ireland, people are saying that the screening programme should inform patients – that would mean receiving a phone call or letter from someone the patient does not know. In England the treating clinician is supposed to inform the patient that a review of their screening tests will take place and ask them if they would they like to be informed of the results. Surveys suggest that fewer than half of doctors treating women with cervical cancer have such a conversation. Other countries explicitly discourage any disclosure. Others have suggested that the review should be done anonymously, so that lessons can be learnt but it is impossible to link the results of the review to the patient.

What in the past was a somewhat esoteric discussion about disclosure has suddenly become a major issue that has led to the resignation of the clinical director of the Irish screening programme and the accusation that what happened in Ireland amounts to an extraordinary breach of trust in the state’s handling of women’s healthcare.

It seems inevitable that doctors and screening programmes will have to become more open. One of the few things we know about breaking news such as this is that it should be done at the earliest opportunity.

You may be interesting in the following related content

Cervical screening in Ireland update

Results from the review as reported in the BMJ

The views expressed are those of the author. Posting of the blog does not signify that the Cancer Prevention Group endorse those views or opinions.

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