Words matter: The power of language in cancer discussions

The priority for any individual diagnosed with cancer is to be provided an effective therapy as quickly as possible. However, Ben Hargreaves finds that, alongside treatment, there is a need to understand how language can influence both patient behaviour and outlook towards their therapy.

Patient centricity has been defined as putting the patient first in open and sustained engagement, with the aim of respectfully and compassionately achieving the best outcome for the patient and their family. The ways in which patient centricity can be applied have broadened beyond early utilisations in clinical trials to a range of areas, such as device design and the growing role of patient organisations.

One area where this is important, and particularly complicated, is in oncology. Cancer is the most feared of all conditions. Due to this, there is a huge amount of R&D going into creating new treatments and discovering new ways of treating cancer.

However, alongside the rush to treat the disease, there is also an awareness of the smaller elements that can make a patient’s treatment journey more manageable or more difficult. This can be produced by something as simple as the language used during the treatment and diagnosis process. Words have the power to influence a patient’s outlook, and that alone should be enough to draw focus to the area.

The power of words

This change is happening, as the use of language is understood to be particularly relevant for cancer patients. It is common to hear terms used for cancer and patients that are not used in other disease areas. Language has emerged that relies on ‘fighting’ terms to describe the treatment process: being in a ‘battle’ with cancer, ‘surviving’ a diagnosis, and ‘losing their battle’ with the disease. For some people, the outlook of physically confronting the disease may be of use, but how helpful this type of description is for broad populations is now being researched more.

A study by the University of South California found that using terms such as ‘battle’ or ‘war’ to describe being treated for cancer led people to feel that the process must be difficult, and painful to treat. Further, the surveyed participants felt they would not be able to control the disease or do anything to stop it from occurring – which is particularly dangerous, given the number of lifestyle factors that increase the risk of cancer.

The importance of the issue has also seen major companies that produce cancer treatments conduct research to understand better ways to engage compassionately with patients. Novartis released findings from its study, ‘My Cancer. My Words’, at the end of last year. The company surveyed over 2,000 people living with cancer in the US and the UK, and healthcare professionals (HCPS), to explore how the use of language affects people living with cancer.

The aim of the study was to understand how people reacted to specific words and phrases commonly used in relation to cancer and treatment. Researchers compiled the frequency of words associated with cancer, as well as what phrases they associated with cancer, and whether words and phrases would be associated with a positive or negative impact on treatment choices. And pharmaphorum received comment from a Novartis spokesperson to better understand the company’s aims for carrying out the research.

“The words and metaphors people use to talk about cancer can feel worlds apart from any other disease. By teaming up with a multidisciplinary committee of experts, as well as surveying patients and physicians in the UK and US, we wanted to investigate how much words really matter, and to what extent language might even affect cancer outcomes. Our aim is to inspire more people living and working with cancer to explore this issue with us, and to create greater debate about the under-recognised – yet critical – role words can play in cancer treatment,” the spokesperson stated.

Individual reactions

Novartis’ survey found two-thirds of patients (67% of 1871) and almost all healthcare providers (88% of 142) believed that language impacts their lives or the lives of those living with the disease. Among the findings, people living with cancer most commonly associated ‘cancer’ with ‘death’, ‘chemotherapy’, ‘pain’, and words that are used to describe fear and anxiety – this held true for all types of cancer, and for however long they had lived with it.

The research also focused on identifying the differences that existed between the respondents based in the UK and the US. One finding was that nearly all metaphors were perceived to have a negative impact on treatment choice by UK participants, which did not hold true for those in the US. Novartis provided the example of the word ‘warrior’, which half of respondents in the UK identified as having a negative impact on their ability to choose a treatment, but was mostly found to have a positive impact on those in the US.

Worse than simply having a negative impact on treatment choice, the ‘war’ terminology frequently deployed may create a feeling of impotence in those where recovery is not possible. In a study with women diagnosed with metastatic breast cancer, the results found that women responded to diagnosis as an ‘unfair fight’ because of its incurable nature. Instead, the participants preferred to emphasise ‘living life’ with their diagnosis, rather than fighting it.

No perfect solution

A conclusion that Novartis’ study drew was that there were no universally ‘perfect words’; even words that could be regarded as neutral, such as ‘patient’, elicited both a positive and negative reaction. The focus, then, must be on understanding the individual’s language preference. One lesson to be taken is that some people will be helped by identifying as a warrior, while others may prefer language that highlights that they are living a normal life, regardless of their diagnosis.

In terms of how Novartis will apply the study on its work in the future, the spokesperson offered: “In the short term, we hope it will inspire more people living and working with cancer to explore this important issue with us. However, the questions it raises are complex. How we can build on this research with the community over the longer-term is something we’re discussing with our committee of experts, and we welcome wider input.”

As with many complex issues, there is no single correct answer. Simply having the discussion over what word choices would be suitable for the patient is the right path forward to create a flexible, individual-orientated language for use with people living with cancer.