Should you mention the C word when it is probably nothing?

In a recent case, a patient didn’t have a cancer test that their doctor had advised. Years later, advanced cancer was found and the doctor was sued for not telling them the test was for cancer, arguing that had they been informed, they would absolutely have had the test.

This case raises the question: should doctors tell patients when tests are to check for cancer, even when the likelihood of cancer being detected is slim?

A test to help rule out cancer is fairly common, whether it’s conducting a full blood count, a chest x-ray, an endoscopy or colonoscopy. These routine tests are often carried out as part of an investigation into a patient’s symptoms. With communication between a doctor and patient being key to good decision-making, why wouldn’t they be told?

The C word

Doctors often say that the main reason they don’t mention cancer is that they don’t want to upset their patient – they shield them from the truth in order to protect them. The concern being, that if the patient knows what the test is for, they become anxious and concerned about what may be found, and may refuse to have the test altogether. Complaints are sometimes made against doctors for upsetting patients by mentioning the word “cancer” so some doctors prefer to be less specific, saying it’s a “general check-up” or a test “just to be sure”. This approach however is likely to be viewed as old fashioned and paternalistic and therefore out of keeping with modern medical practice.

If patients are not told how serious their diagnosis could be and why the tests are being carried out, they may decide that they don’t need to have them. But with high profile public health campaigns already encouraging people to look for blood in their urine, have persistent coughs checked, and regularly check their breasts, do doctors really need to adopt such a cautious approach to discussing cancer testing with patients, when an early diagnosis could make all the difference?

In a recent MPS social media survey, 78% of respondents said yes, doctors should tell patients when tests are to check for cancer and 22% said no, they shouldn’t.

So what should you tell them?

It is challenging to have difficult conversations with patients, especially when there’s not much time available. Knowing how much information to share can vary based on individual circumstances. The GMC advises doctors to think about:

• the patient’s needs, wishes and priorities
• the patient’s knowledge and understanding of their condition, prognosis and the treatment options
• the nature of the condition
• the complexity of the treatment
• the nature and level of risk associated with the investigation or treatment.

A doctor should never make assumptions about what information a patient might want or need, their knowledge and understanding of what is being proposed, or any other factors a patient might consider to be significant.

A patient has a right to know about their diagnosis and prognosis and any uncertainties including further investigations. A doctor should inform them of all the treatment options, including the option not to have any treatment. They should be told what the purpose of any proposed investigation or treatment is, what it will involve and any potential benefits, risks and burdens.

A useful question to ask the patient is ‘Is there anything that you are worried about?’ as it may prompt the patient to discuss specific concerns (which could include the fact that they are worried about the possibility of cancer, which in turn could lead into a discussion about the investigation and management options).

Most importantly, doctors should answer any questions the patient may have, honestly and as fully as they can.

So, when might doctors not share information with their patients?

Information should not be withheld, even if a relative, partner or friend of the patient has asked you to do so, unless you believe the disclosure could cause the patient serious harm.

If a patient is adamant that they do not want to know about their condition or treatment in detail, you should try to find out why. If they insist they do not want to know, then you should respect their wishes, however, they still need to be informed sufficiently to give their consent for any proposed investigation or treatment.

On the record

It is crucial that you clearly record when a patient has declined to be informed about their condition or treatment – detailing their reasons why and the discussions you have had with them.

Make sure the patient knows they can change their mind and access the additional information at any time.

If you have chosen to withhold information, ensure that you have adhered to regulatory guidance with regards to this and that your records are clearly written and contemporaneous. You should also regularly review your decision and check if the situation has changed.