After finding that most new cancer drugs appear to confer little clinical benefit, The BMJ’s Tessa Richards reflects on her cancer journey and argues that decision making in cancer must improve, to involve patients at every level

The struggle to cope with debilitating side effects

As a patient and patient advocate I repeatedly hear, read, and observe stories of bravery, disillusion, and despair. Many patients and carers, including me,7 are deeply traumatised by their cancer journey. Fellow travellers describe the shock of diagnosis, the fear, and then often a determination to “beat cancer” by taking unpronounceable drugs and other treatments. Next comes the exhausting struggle to “comply” with complex regimens, access disjointed and often distant services, and cope with distressing and debilitating side effects. Finally, the progressive loss of morale and hope that comes with advancing disease, the inexorable erosion of quality of life, and the realisation that treatment will not deliver on its promise.

The options here are seldom easy, of course, and no one forces patients to embark on chemotherapy, aggressive or otherwise. Indeed, oncologists argue that patient pressure is what makes them prescribe—an apologia I don’t find wholly convincing. Patients may be desperate for “magic bullets,” but they still take doctors’ advice seriously. It’s a professional responsibility to present people with uncomfortable truths, to be transparent about the limitations of the evidence and how “effectiveness” of cancer treatments is judged, and to be objective about information on risks, harms, and benefits.

A couple of years ago I was invited to a meeting convened by an oncologist who specialises in dealing with the abdominal side effects of cancer treatment. It was an eye opening experience. The consultant, who later diagnosed and treated the candida oesophagitis I got after radiotherapy, said that “colleagues don’t like me holding this meeting, for they say it gives oncology a bad name, and [that] cancer treatments will become less toxic and more effective in time.” Oh—and meanwhile, let’s not frighten the horses.

Inadequate discussions about treatment

Undeniably, many new cancer treatments are highly effective, and the issue for patients is often getting access to them. New research and personalised medicine have opened up exciting avenues. But we live in the present, and what seems a near universal message is that discussions about treatment are often woefully inadequate.

Patients may get their diagnosis, prognosis, and proposed treatment laid out in a couple of short outpatient sessions. Although this may be deemed efficient, a recent report from Macmillan suggests that about a quarter of people with a cancer diagnosis don’t fully understand what’s wrong with them and that half are not fully informed about side effects.8 In an eloquent response, Ceinwen Giles, a member of The BMJ’s patient panel, has underlined how getting a diagnosis is “numbing” and how patients need time to formulate the questions they need answering.9

Shortage of time is a big problem, but it’s not the only one. Decision making in oncology has evolved into a production line affair. Patients packaged as “cases” are processed through multidisciplinary teams. The focus is on scan and test results and treatment options. Consensus on “recommended” treatment may be reached with little or no reference to patients’ goals, hopes, fears, or preferences at the current stage in their cancer journey. The voice of upbeat interventionists tends to trump the cautious and can fuel more aggressive treatment.10

When a panel of experts has come to a decision it’s hard to even question it, let alone row back on it. I’ve tried this and found that it doesn’t endear you to your clinicians. Nor does asking to attend the multidisciplinary meetings at which your case is discussed, to get an understanding of the rationale for decisions. A recent request I made was met with surprise and a sharp, “No, we are not set up to include patients.” When I declined chemotherapy that was recommended by a consultant I’d never met before (on the basis of a discussion about my case that I didn’t even know was taking place), his conclusion, incorrectly, was that I lacked the will to live.11

As a doctor I know…