Coma & Disorders of Consciousness: An interdisciplinary Research Project

In detail

The development of new medical technologies and procedures is leading to a rapid rise in the number of people it is now possible to keep alive, for years or for decades, after catastrophic brain injuries resulting in chronic disorders of consciousness – states widely referred to as ‘coma’, including the permanent vegetative state and minimally conscious states. This project set out with the aim to find answers to a range of sociological, legal, philosophical, ethical and economic questions relating to chronic disorders of consciousness – a novel research area in which there is relatively little research. The intention is to make the University a Centre of Excellence internationally for research in this area.

Interviews were conducted with more than 50 people with relatives with chronic disorders of consciousness as part of an initial collaboration with Cardiff University. These interviews have been transcribed, anonymised and stored in an online data base to which members of the research group have access. Analysis of this data base underpins many of the group’s publications. We used them to investigate family understandings of diagnoses and clinical decision-making, their views about advance decisions to refuse treatment, their understanding of ‘death’ and their approach to law.

For example, research led by Celia Kitzinger found that ten times the national average (30% as contrasted with 3%) of people with relatives in chronic disorders of consciousness had completed advance decisions to refuse life-sustaining medical treatment in the event of their lacking the capacity to make contemporaneous decisions. The 70% who had not completed them were either ignorant of their existence, believed they would not work in practice, or mistakenly believed that next-of-kin have decision-making rights over an incapacitated relative. This work has been presented as part of an ESRC seminar series on advance decisions in May 2013 and a published paper on the 'window of opportunity' for death after catastrophic brain injury has been cited in the draft report by the Royal College of Physicians on the management of disorders of consciousness.

The ambiguous ontological status of permanently vegetative patients has practical implications for decision-making in relation to the withdrawal of life-prolonging interventions. This is because many of the arguments opposing withdrawal depend on the assumption that the patient is unequivocally alive in the first place. An analysis of the interviews with families who have a relative in a permanent vegetative state (and who accept that diagnosis) show that they are equivocal as to whether the patient is currently 'alive' or 'dead'. The analysis builds on previous research by Stephen Holland and reveals the complexity of the ordinary concept of death and provides evidence that it cannot be described purely in terms of a solely biological phenomenon.

Family members of people with chronic disorders of consciousness often find themselves having to engage with the law - e.g. in relation to insurance claims, the Court of Protection, and decisions about treatment and treatment withdrawal. Research led by Simon Halliday explored the interviewees' background assumptions about legality which they draw upon when trying to make sense of the situation in which they find themselves and which structure and inform their actions. It was found that there were three different conceptions of legality which we can be described as 'law as sword', 'law as shield', and 'law as illegitimate barrier'. These findings contribute to the existing body of theory on legal consciousness and have implications for medical decision-making within the broader socio-legal context. Papers have been presented at two conferences in North America: the Annual Meeting of the Law and Society Association, Boston, June 2014, and A Meeting of the Canadian and Australian Law and Society Associations, Vancouver, July 2014.

Interview data also suggested that a particular concern for families and carers is the problem of the 'voicelessness' of individuals in vegetative and minimally conscious states. Alice Hall has analysed Isabel Allende's Paula (1995) as an example of how contemporary fictional and autobiographical writing are important sites for the formation and renegotiation of wider cultural understandings of coma. Allende's focus on alternative therapies and the everyday experience of carers is contrasted with stereotypical representations of coma in Pinter's 'A Kind of Alaska' (1982) and Almovodar's film, 'Talk to Her' (2002). The findings have been presented through a paper and panel discussion at a' BookTalk' public engagement event in the 'Before I Die Festival' at the University of Cardiff in May 2013 and at the Annual Medical Humanities Conference on 'Global Medical Humanities' at the University of Aberdeen in July 2013. The interviews featured alongside specially composed poetry and music inspired by these accounts by poet James Nash and metal writer Eliza Gregory in an episode aired on Saturday 11th October 2014 of BBC Radio 3's 'Between the Ears'.

The group’s PI, Celia Kitzinger was awarded a four-week summer Residency at the Brocher Foundation, Hermance, Switzerland during August 2013 where she presented a talk about the work of the Coma and Disorders of Consciousness research group to an international audience, including representatives from the World Health Organisation and various NGOs. The foundation hosts researchers from all over the world who dedicate their work to ethical, legal and social aspects of medical development and public health policies.

In 2013 CDOC research was submitted as evidence to House of Lords Select Committee on the Mental Health Capacity Act 2005. This, along with evidence from over 200 others, informed the conclusion that vulnerable adults are being failed by the Act designed to protect and empower them and informed recommendations for improvements. Since then three pieces of research by Celia Kitzinger (University of York) and Jenny Kitzinger (Cardiff University) have been cited in the Houses of Parliament Parliamentary Office of Science and Technology POSTnote on "Vegetative and Minimally Conscious States". POST is an office of both Houses of Parliament, charged with providing independent and balanced analysis of policy issues that have a basis in science and technology.  Most parliamentarians do not have a scientific or technological background but science and technology issues are increasingly integral to public policy. Parliamentarians are bombarded daily with lobbying, public enquiries and media stories about science and technology. POST's aim is to help parliamentarians examine such issues effectively.

A new online resource was launched in 2014, as part of the Healthtalkonline.org website, to provide support and information for families, health professionals, case workers, lawyers and others involved in work with this group of patients. Helping to improve communication between medical practitioners and family members, it will also be useful in professional training for those working within health services and law, and for journalists reporting on issues around ‘coma’.

Outputs

Publications

• Latchem, J., Kitzinger, J and Kitzinger, C (2015). Physiotherapy for vegetative and minimally conscious state patients: family perceptions and experiences. Disability and Rehabilitation, doi:10.3109/09638288.2015.1005759
• Saunders, B., Kitzinger, J. & Kitzinger, C. (2014). Participant Anonymity in the Internet Age: From Theory to Practice. Qualitative Research in Psychology, doi:10.1080/14780887.2014.948697
• Hall, A. (2014). Representing chronic disorders of consciousness: voice in Isabel Allende’s Paula. Literature and Medicine, 32(1)
• Kitzinger, C., & Kitzinger J. (2014). Grief, anger and despair in relatives of severely brain injured patients: responding without pathologising. Clinical Rehabilitation (in press)
• Kitzinger, C., & Kitzinger J. ‘This in-between’ – how families talk about death in relation to disorders of consciousness’, in Van Brussels, L. and Carpentier, N. (eds) (2014). The Social Construction of Death: interdisciplinary perspectives. Palgrave
• Halliday, S et al (2014). Law in everyday life and death: A socio-legal study of chronic disorders of consciousness. Legal Studies,  DOI: 10.1111/lest.12042
• Holland, S., Kitzinger, C. & Kitzinger, J. (2014). Death, treatment decisions and the permanent vegetative state: evidence from families and experts. Medicine, Health Care and Philosophy, doi: 10.1007/s11019-013-9540-y
• Kitzinger, C and Ktizinger, J (2013). Withdrawing artificial nutrition and hydration from minimally conscious and vegetative patients: family perspectives. Journal of Medical Ethics, doi:10.1136/medethics-2013-101799 
• Kitzinger, C and Kitzinger, J (2012). The 'window of opportunity' for death after severe brain injury: Family experiences. Sociology of Health and Illness: A Journal of Medical Sociology, doi: 10.1111/1467-9566.12020

Grants

• Celia Kitzinger, ESRC + Dippex Charity, Creating a 'Health Talk Online' web-based resource on family experiences of disorders of consciousness, £60,000

Associated and Other Publications/Reports

• Kitzinger, C and Kitzinger, J (2013). Evidence Submitted To: HOUSE OF LORDS SELECT COMMITTEE ON THE MENTAL CAPACITY ACT 2005
• Kitzinger, C and Kitzinger, J (2013). U.K.’s Landmark Case on Withholding Treatment Affirms the Importance of Patients’ Values. Bioethics Forum
• Editorial by Derick Wade (2014). Patients with prolonged disorders of consciousness: more than a clinical challenge. Practical Neurology, doi: 10.1136/practneurol-2013-000781
• Formby, A., Cookson, R. & Halliday, S. (2015). Cost analysis of the legal declaratory relief requirement for withdrawing Clinically Assisted Nutrition and Hydration (CANH) from patients in the Permanent Vegetative State (PVS) in England and Wales. CHE Research Paper, 108 (University of York)