Professor Dame Lesley Fallowfield: the science and art of cancer communication

There is something scary-sounding about Professor Dame Lesley Fallowfield’s job: she is a psycho-oncologist.

We all know what an oncologist is, but the word psycho conjures up the image of the shower scene in Alfred Hitchcock’s film of that name…but in the flesh, Lesley Fallowfield is not at all frightening.

Lesley has the reassuring but firm manner of the nurse that she once was, coupled with the authority that goes with being a pioneer in studying the emotional and psychological aspects of the cancer experience.

Now professor of Psycho-Oncology at the University of Sussex, she has personally trained many hundreds of leading oncologists in how to communicate better with their patients, and is thus the ideal first person to be interviewed for this new blog.

Dame Lesley

Sitting in the basement of the elegant Royal Society of Medicine in London’s West End, she explained to me how she found her way into this professional niche. After she had completed her training as a nurse, she studied for a BsC in experimental psychology and neuroscience, and then a PhD. The defining moment in her early career came when she visited a friend at the Royal Marsden hospital in London. The friend was suffering the after-effects of an early bone-marrow transplant, and was very poorly indeed.

“If you are so clever Lesley, why don’t you do something about this,” her friend challenged her.

“What do you mean?”

“Why did they put me through this treatment without telling me what was going to happen?”

Lesley sat in the car park of the hospital and cried, realising that her friend was not going to survive. Worse, her friend had endured a painful and ineffective treatment without being given any information about what might be in store for her.

Measuring the intangible

Thereafter, Lesley specialised in finding ways to measure important but intangible aspects of the cancer experience, for example quality of life. This work was important in helping doctors and their patients understand the trade offs between trying out new treatments, and the patient’s wellbeing.

“It became clear that at that time, clinical decisions were being made based on inaccurate information and misunderstanding,” she reflects. “Quality of life was completely overlooked.”

Her work led eventually to the first evidence-based communications training for healthcare professionals.

As I wrote in an earlier post, encounters between medical professionals and their patients are often unsatisfactory, especially when a cancer diagnosis is being imparted and or treatment options considered.

Communicating in times of emotional emergency

The patient is almost certainly in a state of shock, and not in a position to take on board more than the absolute basic minimum of information. This is the start of the emotional emergency that defines the cancer experience.

Everything is taking place in an atmosphere of fear, uncertainty and bewilderment – and that is just the patient’s point of view. The doctor will be under his or her own pressures, and temptation is to stick to a script rather than make the big effort to show real empathy for the patient’s feelings.

“It’s extraordinary how inflexible how many healthcare professionals are in terms of how they express things,” Fallowfield says. “In any case, for a large number of people what the doctor says will go completely over their heads.”

In the world of science, it is not enough to have an intuition that something is wrong – you have to measure it and prove it. This is especially difficult to achieve with a subject like communications, where highly educated doctors tend to think that they have natural expertise and authority.

In the mid-1980s, Lesley and her team began the work that led to a huge randomised trial involving 148 oncologists and over 5000 patients from 34 cancer centres throughout the UK.  They filmed the consultations between doctor and patients. Afterwards, the doctors would complete a checklist to say what they thought they had covered, and the patients were given a satisfaction questionnaire.

Doctors were also sent on a three-day residential training programme, involving review of the video recordings and role-play with professional actors. The effectiveness of their communication was measured before and after this training.

The tests were set to exacting standards, involving the kinds of randomised checks and balances normally found in drugs trials , and the results were eventually published in The Lancet, the authoritative medical journal (see: https://www.ncbi.nlm.nih.gov/pubmed/11879860?dopt=Citation) . The project was funded by Cancer Research.

Demonstrable results

The results demonstrated, to a standard of scientific proof calculated to persuade the most cynical medical professional, that the training significantly and measurably improved doctor-patient communications. Specifically, doctors who went through the training were better at asking both focused and open questions, and expressing empathy and responding to patients’ cues.

One highly experienced surgeon who took part told Lesley that the course had made him profoundly depressed: he couldn’t bear to think of the hurt he had inadvertently caused to his patients over the years.

In her non-scary way, Lesley told the surgeon not to beat himself up. The surgeon went on to be an evangelist for the cause of good communications and cancer.

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