Metaphor in End-of-Life Care

This project is concerned with how different groups of people talk about their experiences with end-of-life care. The care and support needs of people approaching the end of life are potentially relevant to every member of society, and have recently received considerable attention on the part of healthcare policy makers and clinicians in the UK. The way in which the experience of end-of-life care is talked about can shed light on people's views, needs, experiences and challenges, and identify areas where increased anxiety and/or misunderstanding can occur, for example, in communication between patients and health professionals.

We will investigate the language use of members of three stakeholder groups in end-of-life care: patients, unpaid family carers and senior healthcare professionals. We will analyse a large collection of data (1.5 million words) consisting of interviews with members of each group (approximately 100,000 words per group) and contributions to online fora by members of each group (approximately 400,000 words per group). The specific aspect of language use we will focus on is metaphor, which is recognised in many different areas of study as an important tool we use to communicate and think, especially about topics that are impalpable, complex, sensitive or taboo. Illness and death are among these topics. For example, we conventionally talk metaphorically about people 'battling cancer' or needing a 'fighting spirit' to survive cancer. Different metaphors highlight some aspects of the topic and background others. The 'war' metaphor for illness highlights the way in which being ill may involve strength, perseverance, endurance and heroism, and facilitates an understanding of recovering health as a victory and of not recovering or dying as a defeat. On the other hand, this metaphor backgrounds the way in which one may, for example, accept and live with an illness, and may make patients feel as though their body is a battlefield on which a war is being fought. However, the shortcomings of a particular metaphor may be overcome by replacing it or using it alongside an alternative metaphor. For example, seeing the experience of illness as a journey can highlight both progress and lack of progress, as well as routine, companionship, and so on. Indeed, recent policy documents on cancer in particular suggest a deliberate shift away from military metaphors towards 'journey' metaphors, such as the 'cancer journey' and clinical 'pathways'.

By analysing systematically the metaphors used by different stakeholder groups to talk about end-of-life care, we will gain a better understanding of their views, experiences, and needs. By exploring both the differences and similarities in the use of metaphor within and across each group, we will be able to draw conclusions about potential opportunities and difficulties in relationships among members of the three different groups. Our findings will have implications for practice and training in the provision of end-of-life care. We will therefore share our results with a range of groups and organisations involved with end-of-life care, in order to make a positive impact on the experience of patients approaching the end of life. Our project will also result in a better understanding of the phenomenon of metaphor itself, which will be relevant to researchers in the humanities and social sciences.

The method we will employ to identify and analyse metaphor in our data involves both 'manual' analysis based on well-established techniques and computational analysis. The most innovative aspect of our method is the exploitation of a software tool that was developed by a member of our team for linguistic analysis. In a previous project, we have adapted this tool for the analysis of metaphors in large amounts of data. This will enable us to identify metaphorical language more systematically and comprehensively than is currently possible with other methods.

Since the focus of the project is communication about end-of-life care, the findings of the research are potentially relevant and beneficial to the whole of society. However, the more specific beneficiaries of the research are organizations and individuals involved with end-of-life care, including: healthcare professionals; trainers, leaders and policy-makers in healthcare; governmental and non-governmental agencies; research centres; charities and patients/carers associations.

We have identified the following organizations and groups as our main beneficiaries, or as channels through which we can reach potential beneficiaries:
1. International Observatory on End of Life Care: the observatory was established in 2003 at Lancaster University and is a globally recognised centre of excellence for research in palliative and end-of-life care; it works closely with the local health and social care community in the North West of England, as well as nationally and internationally; it has a global virtual membership.
2. European Association for Palliative Care: the EAPC is an NGO recognized by the Council of Europe; it promotes palliative care in Europe and brings together a large number of national associations.
3. The NHS National End of Life Care programme: the programme works with health and social care services across all sectors in England to improve end-of-life care for adults by implementing the Department of Health's End-of-Life Care Strategy.
4. Help the Hospices: Help the Hospices is the national charity for the hospice movement, and includes approximately 80 per cent of hospices in the country; it supports hospices throughout the UK through grant-aid, training, education, information, national fundraising and advice.
5. The National Cancer Research Institute: the NCRI is a UK-wide partnership between the government, charity and industry which promotes co-operation in cancer research among 21 member organisations for the benefit of patients, the public and the scientific community; its website provides a single source of information for research and initiatives relevant to patients.
6. Members of online fora representing the three stakeholder groups involved in our research: patients, unpaid family carers and healthcare professionals. Relevant fora include: www.pain-talk.co.uk (health professionals), http://community.macmillan.org.uk/forums/ (patients), and http://www.carersuk.org/Forums/ (carers).
7. Members of the Lancaster University Research Partner forum; the group includes members of different stakeholder groups (e.g. cancer sufferers and family carers) and is funded by Cancer Experiences Collaborative (CECo); it meets monthly and collaborates with researchers by helping to develop new projects and providing feedback on research proposals.

The members of these different groups will benefit from an increased awareness of how metaphor is used by the three stakeholder groups represented in our data in order to convey their experiences of, and approach to, end-of-life care, and particularly to express their attitudes, emotions and evaluations, perceptions of themselves, others and their mutual relationships, and views on personal and professional issues and challenges. Some uses of metaphor may reflect or contribute to anxiety, frustration and misunderstanding. Similarities and differences in metaphor use within and across different stakeholder groups may lead to communicative breakthroughs or communicative problems. Our findings will therefore be relevant to those involved in treating and caring for patients, in the training of health professionals, in advocacy on behalf of patients and unpaid carers, and in policy-making, especially in the area of communication between health-care providers and patients. Overall, the findings of the project can therefore contribute to the improvement of provision for patients approaching the end of life.