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Don't tell cancer patients how long they have to live - the estimate is usually wrong

Laura Donnelly
The conference heard that patients with advanced disease found it more helpful to be given a range of estimates  - PA

Doctors should not tell cancer patients how long they have to live - as their prognoses are usually wrong, medics say. 

Researchers said that giving patients with advanced disease just one estimate, such as telling them they have 12 months to live, was only accurate around 20 to 30 per cent of the time. 

Instead of such estimates, based on averages, medics should provide a range of estimates - including best and worst case scenarios, a medical conference has heard. 

Dr Belinda Kiely, medical oncologist and senior research fellow at the University of Sydney, Australia, said medics worried about what to say to patients, without destroying hope. 

She said doctors should give patients with advanced disease plenty of information, but not pin down a prognosis to any one estimate.  

Her research found that women facing advanced breast cancer found it most helpful if they were given a best-case, worst case and typical survival.

Speaking at the Advanced Breast Cancer Fifth International Consensus Conference in Lisbon, she said: “Every week in my clinic, I meet women of all ages with advanced breast cancer and they frequently ask: ‘How long have I got?’ They have very practical concerns and questions that they want help with; for example, they might want to know whether they should cancel a planned holiday, whether they will be able to attend their daughter’s wedding, or whether they should stop working or sell their house. 

“However, oncologists are sometimes unsure about how to help. They may worry about how much a patient wants to know, whether it’s possible to give accurate information and how best to talk about this without destroying hope.”

Trial data on average survival times was misleading - and frequently gave patients false hope, she sugested. 

Dr Kiely told the conference: “Most data on survival times for advanced breast cancer come from clinical trials, where patients must meet specific eligibility criteria. These patients tend to be younger, fitter and have fewer other health problems, and therefore often live longer than the patients we see in everyday practice.”

While such data was a “good starting point” single number estimates were rarely accurate, and did not convey the hope of a possible longer survival time, she said.  

Her method, tested in a series of studies, uses the expected survival time, which is divided by four for a worst-case scenario, and multiplied by three for the best-case scenario. 

This means a patient who might have been given a 12 month prognosis, based on median survival, would be told they had between three months and three years to live.

In addition, they would be told that typical survival in this situation was between six months and two years - betwen half and two times doctors’ estimated survival. 

Trials on  patients given such scenarios established that they found it more helpful, easier to understand and more reassuring that the single number average survival estimate.

Dr Kiely said: “If we tell a patient that her estimated median survival time is six months, that conveys no hope of a possible longer survival, even though she has a 50 per cent chance of living longer. 

“Providing three scenarios helps patients prepare for the possible worst-case and, at the same time, hope for the possible best-case. This is more helpful for patients making plans and decisions for the future.”

Chair of the conference, Dr Fatima Cardoso, Director of the Breast Unit of the Champalimaud Clinical Centre in Lisbon, Portugal, said: “Research shows that patients who discuss these issues with their doctor have better quality of life, are less likely to undergo aggressive end-of-life resuscitation and are less likely to die in the hospital. But at the moment, we also know that many patients are not having these conversations.

“Most patients with advanced cancer want some information about how long they are likely to live, although many say they find it difficult to ask this question. The onus is on us as oncologists to start such conversations with our patients. This tool for calculating and sharing the three scenarios gives doctors the help they need to communicate with patients in a realistic and helpful way.”