Some differences between doctors’ and patients’ perspectives on what makes good treatment were thrashed out at a meeting of 200 patients, doctors, nurses and support organisations in USA in September.

Often patients feel they have had poor treatment when in fact clinically their care has been excellent, said Baroness Hayman, minister with responsibility for cancer. Patients dissatisfaction may be based on their not having been given the information they need in a sensitive way. She said most patients could not know the quality of their clinical treatment, but did know if they had been treated as human beings. We have to share some of the issues about clinical expertise and clinical competence with patients.

A number of patients at the conference, organised by the Doctor Patient Partnership and the Patients’ Association, had strongly held views about particular aspects of treatment. Based on their own experience, some were keen advocates of particular complementary therapies, or fierce critics of particular standard treatments.

It was clearly inappropriate to explore these delegates’ own experiences, but in a session called ‘surviving cancer’, cancer specialist Dr Martin Gore explained how health professionals identify the management and treatments that work.
advanced cancer
‘Evidence-based medicine, as it is now called, means collecting information about large numbers of patients, sometimes over several years. This is analysed using rigorous statistical methods. Only then can researchers be sure that any differences in outcome – length of time free of cancer symptoms, for example – are correctly linked to the real cause rather than to coincidental differences between groups.

As a result of a huge amount of work using this approach, doctors are now sure about some of the aspects that make a real difference in treating cancer patients. Across a number of cancers the best predictors of a successful outcome, said Dr Gore, are if the patient is treated in a specialist centre, and within a clinical trial. Four major studies had demonstrated both these points. For specialist centres, the studies were specifically looking at teratoma, myeloma, lung cancer and childhood cancers.

For ovarian cancer, a convincing study had again shown that patients did better if they were treated by the relevant specialists. They also benefited from being seen in combined clinics involving all the different medical and nursing specialisms. Another important point in treating ovarian cancer, said Dr Gore, was treatment with paclitaxel (Taxol). On average, patients lived a year longer, and since the studies were well conducted and had involved over 1,000 patients, he said, there is a one in a million chance that this is a wrong result. He exhorted the health authorities, and the DoH which holds the purse strings, to support evidence-based medicine by making available all treatments that have been proven to work.

On this point, at least, there was broad agreement among all the delegates.

A‘Most patients put information first on their list of needs, and want some say in decisions about their treatment A— but joint decision-making indicates a healthy respect for the specialist’s expertise.A’

Gloria Freilich, Europa Donna

She wouldn’t take the Provera when I suggested it, but she did after you had shown her the scans and explained what was happening and the issues in her treatment.A’ <

A pain relief specialist, speaking to Prof Richard Beard, director of chronic pelvic pain services at Northwick Park hospital

Reducing toxicity from the cancer or its treatment is a very important benefit.A’ Dr Martin Gore, Royal Marsden hospital

We give patients a written explanation of all the procedures we use, yet when interviewed almost all of them say they have had no information. WhatA’s going on here is what happens to all of us: when presented with all this stressful information, your mind goes into neutral and you cant take it in.A’

Dr John Wedley, director of pain relief, GuyA’s & St ThomasA’ Hospital Trust Doctors should be trained, tested and assessed in communication skills.A’ Baroness Hayman, health minister with responsibility for cancer