Tag Archives: melc

Reflections from the Front Line: Sarah Russell on MELC and Twitter

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Sarah Russell (Director of Education and Research, Peace Hospice Care and the Hospice of St Francis) attended this month’s Language in End-of Life-Care event, where an audience of approximately 40 healthcare professionals and researchers specialising in palliative and end-of-life care gathered to share their perspectives.

In a new blog post on eHospice, she reflects on this experience, as well as sharing some insight into a tweet chat with @WeNurses, where 128 participants came together to discuss individual experiences, symptom control, communication, recognising dying, family and patient needs, caring, and denial as a coping mechanism.

Read more to learn about Sarah’s experience, and to hear her challenge for everyone (including researchers and health care professionals) by visiting eHospice now.

‘Language in End-of-Life Care’: A user engagement event

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On 8th May 2014, the main findings of the CASS-affiliated project ‘Metaphor in End-of-Life Care’ were presented to potential users of the research at the Work Foundation in central London. The event, entitled ‘Language in End-of-Life Care’ attracted an audience of approximately forty participants, consisting primarily of healthcare professionals and researchers specialising in palliative and end-of-life care. Although most participants are based in the UK, international guests joined us from Germany, the Netherlands, Spain and the US.

melc1Professor Sheila Payne (Co-Investigator on the project and Co-Director of Lancaster’s International Observatory on End-of-Life Care), opened proceedings and acted as chair for the day’s activities. Two high-profile invited speakers shared their perspectives on communication in end-of-life care. Professor Lukas Radbruch (Chair of Palliative Medicine, University of Bonn) gave a presentation entitled ‘The search for a final sense of meaning in end-of-life discourses’. Among other things, he emphasized the influence of language and culture on perceptions and attitudes towards end of life and end-of-life care. Professor Dame Barbara Monroe (Chief Executive of St Christopher’s Hospice, London) discussed the main current challenges in hospice care in a talk entitled ‘Listening to patient and professional voices in end-of-life care’. These challenges, she argued, include those posed by a variety of linguistic and communicative barriers.

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The methods, data and findings of the ‘Metaphor in End-of-Life Care’ project were introduced by four members of the team: Professor Elena Semino (Principal Investigator), Dr Veronika Koller (Co-Investigator), Dr Jane Demmen (Research Associate) and Dr Zsófia Demjén (former Research Associate, currently at the Open University). The project involves a combination of ‘manual’ and corpus-based methods to investigate the metaphors used to talk about end-of-life care in a 1.5-million-word corpus consisting of interviews with and online forum posts by terminally ill patients, family carers and health professionals. The team introduced the findings from the analysis that are particularly relevant to practitioners in end-of-life care, namely: the use of ‘violence’ and ‘journey’ metaphors by terminally ill patients, and the narratives of ‘good’ and ‘bad’ deaths told by hospice managers in semi-structured interviews. The implications of these findings for end-of-life care were suggested by the team and discussed with the audience. Participants were also invited to discuss selected uses of metaphors from the health professionals’ data, and to consider the potential value of some creative, alternative metaphors for cancer in particular.

melc3The richness of the interactions on the day and the liveliness of the event’s hashtag on Twitter (#melc14) suggest that the event was a success. In the words of a hospice director: ‘everybody at the conference was truly inspired by the potential for change in practice and training!’ Although the funded phase of the project is coming to an end, the contacts made on the day are likely to lead to further collaborative research between the Lancaster team and healthcare professionals in the UK and beyond.

“Fighting Words Are Rarer Among British Doctors”: ‘Metaphor in End of Life Care’ project findings featured in the New York Times

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Key findings from the CASS-affiliated ‘Metaphor in End of Life Care‘ (MELC) project have been featured in the New York Times. Journalist Paula Span interviews Principal Investigator Elena Semino and compares findings from the UK-based project to her own experiences in the US. Whereas ‘British public health leaders and medical practitioners are more apt to talk about the end of life as a “journey” instead of a war, with “pathways” and “steps” instead of fights and weapons’, Span finds frequent references to battles ‘on websites for cancer organizations in the United States, like Susan G. Komen and the American Cancer Society’.

Read more about the team’s findings and Span’s comparison to discursive practices in the US by accessing the full article on the New York Times: Fighting Words Are Rarer Among British Doctors

‘Fight’ metaphors for cancer revisited: Are they always bad?

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By the ‘Metaphor in End-of-Life Care’ project team, funded by the UK’s Economic and Social Research Funding Council (ESRC):

Elena Semino, Veronika Koller, Jane Demmen, Andrew Hardie, Paul Rayson, Sheila Payne (Lancaster University) and Zsófia Demjén (Open University)

Recent media controversy over the use of social media by people with terminal illness has sparked a new debate on ‘fight’ metaphors for cancer. Writing in the New York Times on 12th January 2014 about Lisa Bonchek Adams’s blogging and tweeting, Bill Keller describes her as having ‘spent the last seven years in a fierce and very public cage fight with death’. On the one hand, Keller acknowledges that Bonchek Adams’s ‘decision to treat her terminal disease as a military campaign has worked for her’. On the other hand, he favourably compares his own father-in-law’s ‘calm death’ with what he describes as Bonchek-Adams’s choice to be ‘constantly engaged in battlefield strategy with her medical team’.

As part of the ESRC-funded project ‘Metaphor in End-of-Life Care’ at Lancaster University, we are studying the use of ‘fight’ metaphors by cancer patients in a large collection of interviews and online fora. We have found plenty of evidence of the negative sides of these metaphors, which have been criticised by many patients and commentators before Keller, and most famously by Susan Sontag in Illness as Metaphor (1979). Seeing illness as a fight can make people feel inadequate and responsible if they do not get better, as when a patient in our data writes: ‘I feel such a failure that I am not winning this battle’. Military metaphors can also express distressing ways of perceiving oneself, such as when some patients describe themselves as ‘time bombs’ during periods of remission.

On the other hand, we are finding that, for some patients, ‘fight’ metaphors do seem to provide meaning, purpose and a positive sense of self. For example, writing in an online forum, a cancer sufferer proudly comments: ‘my consultants recognised that I was a born fighter’. Another patient says in an interview: ‘I don’t intend to give up; I don’t intend to give in. No I want to fight it. I don’t want it to beat me, I want to beat it. Because I don’t think we should give up trying.’ ‘Fight’ metaphors are also used to give and receive encouragement and solidarity. For example, a patient writes ‘let me hear you scream the battle cry to spur us on to win this war’, while another ends an online forum post with the words ‘Soldier on everybody’.

We would not go as far as to argue that ‘fight’ metaphors should be rehabilitated: they can do real harm, and nobody should ever feel under pressure to see themselves as fighters. However, as with most metaphors, the implications of ‘fight’ metaphors change depending on who uses them, why, where and how. Our data suggest that they can be helpful enough to be recognised and accepted as one of many possible ways of approaching illness, including its terminal phase.

The Economic and Social Research Council (ESRC) is the UK’s largest organisation for funding research on economic and social issues. It supports independent, high quality research which has an impact on business, the public sector and the third sector. The ESRC’s total budget for 2013/14 is £212 million. At any one time the ESRC supports over 4,000 researchers and postgraduate students in academic institutions and independent research institutes.

Originally posted on eHospice. Visit their page for more palliative care news from around the world.

More about the Metaphor in End of Life Care project at Lancaster University

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MELCcoverThe CASS-affiliated Metaphor in End of Life Care project has just released a free resource containing information of interest to many of our readers. Download the document now to learn more about the project, from basic concepts (what is metaphor, and how are they used in everyday life?) to more specific details (why study metaphor in end-of-life care?). Some interesting initial findings are also included. For instance, “Family carers often say that their emotions can only be safely ‘released’ when talking to people who are ‘in the same boat’.” Read on to learn more about the project.