Patient choice can be burden as well as blessing

Cancer Research UK

Patients who are invited to choose their treatment without medical explanation of the options can feel shocked and abandoned by their doctors - a Cancer Research UK study* reveals.

A group of 43 women, who were interviewed by researchers about their experience of ovarian cancer, reported feeling confused and concerned when doctors offered treatment options especially when the doctors did not give their own recommendation.

Cancer Research UK scientist Sue Ziebland who led the study, which is published next month, said: “Patient choice is an important issue. But this in-depth interview study illustrates the confusion among patients and doctors about how to share decision-making in cancer treatment.

The majority of the women said they went along with the doctor’s recommendation often because everything was happening too quickly to seek further information or because they felt “too shocked and too ill and too desperate to survive."

A second group asked questions or sought second opinions but decided to agree with the doctor’s suggestion because they felt there was no “real choice” if they wanted to survive.

A third and smaller group said they had made at least some of their treatment decisions themselves - such as, in some cases, even declining further treatment.

Some women said that when they were offered a choice of treatment they felt unprepared and panicky about making the right decision, thought it was bizarre to be asked and tried to second guess what they thought the doctor wanted them to do.

Susan Dunning,** a 41-year-old London woman diagnosed with ovarian cancer, recalled her medical team had explained that she needed chemotherapy and then added: ‘you might want to look at hysterectomy.

Susan said that at the time of the discussion there were news reports of litigation being brought against gynaecologists and she thought that as a result her doctors were reluctant to suggest she should have a hysterectomy.

"As soon as I said "Yes we’ll have a hysterectomy,’ they all went ‘phew’¦you could see the relief."

Another patient was told: "There are two chemotherapies you can have; you can have just one or you can have both. What do you want?" She told the researcher that she couldn’t understand why she was presented with an option when she was in a "traumatised state" having been recently diagnosed.

Ziebland added: "The study shows that being asked about treatment preferences can surprise or shock women. Clinicians need to explain about clinical uncertainty and how an individual’s values and preferences may relate to what treatments they want to have.

Options should be communicated clearly, differences in opinion should be acknowledged and the doctors should state their preferences. Patients should also be reassured that whatever decision they might chose to make, their relationship with the medical team will not be affected."

Professor John Toy, medical director of Cancer Research UK, said: "It is now, quite rightly, common practice, to include patients as active participants when discussing their treatment options."

"But it is essential that doctors help their patients to understand as far as possible the medical advice offered rather than let them feel that treatment choices are a burden for them to shoulder alone."

Ends

For media enquiries contact Sally Staples in the Cancer Research UK press office on 020 7061 8313, or the out of hours’ duty press officer on 07050 264 059.

** Susan Dunning is available for interview.

Notes to Editor

*Patient Education and Counseling

The interviews were collected by researcher Julie Evans and the study was run by the DIPex charity.

Dipex is a website for patients and families that features hundreds of video, audio and written clips from interviews about experiences of health and illness.

More than 200 clips from the ovarian cancer project can be found on the website.