C2D2 research 1b, 2a & 3a - Chronic Disorders of Consciousness: An interdisciplinary Research Project

FINDINGS/RESULTS

1. The 'window of opportunity' for death.
Given current medico-legal contingencies there is a 'window of opportunity' for death after catastrophic brain injury which is wide open at the point immediately after injury - at which point the patient's prognosis is least certain - and progressively narrows over the subsequent months and years, during which time the prognosis becomes clear. As a result, the current policy of waiting for a certain diagnosis (e.g. of PVS or MCS or profound multiple physical and neurological disabilities) before considering whether life-prolonging treatment should be withdrawn means that many people are being kept alive in states that (according to their families) they would consider a 'fate worse than death'. This has implications for both medical practice and for legislation relation to EOL decision-making. Our published paper has been cited in the draft report by the Royal College of Physicians on the management of disorders fo consciousness.
Findings published in Kitzinger, J. & Kitzinger, C. 2012. The 'window of opportunity' for death after severe brain injury: Family experiences, Sociology of Health & Illness doi:10.111/1467-9566.12020

2. The equivocal ontological status of permanently vegetative patients
Analysis of 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'. Building on Holland's (2010) previous philosophical research on the ordinary concept of death, this analysis 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. The ambiguous ontological status of permanently vegetative patients has practical implications for decision-making in relation to withdrawl of life-prolonging interventions since many of the arguments opposing withdrawal depend on the assumption that the patient is unequivocally alive in the first place. The findings were presented at the Death, Dying, Disposal 11th International Conference of the Association for the Study of Death and Society (5-8 September, Milton Keynes) and subsequently published as Holland, S., Kitzinger, C & Kitzinger, J. 2013 'Death, treatment decisions and the permanent vegetative state: Evidence from families and experts' in the journal, Medicine, Health Care and Philosophy.

3. The legal consciousness of family members of CDoC patients
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 explores interviewee's 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. We found three different conceptions of legality which we call 'law as sword', 'law as shield', and 'law as illegitimate barrier'. Our findings contribute to the existing body of theory on legal consciousness (e.g.Ewick & Silbey 1998) and have implications for medical decision-making within the broader socio-legal context. The draft paper has been accepted for presentation at two at two conferences: Halliday, S., Kitzinger, C. & Kitzinger, J. 2013. Law in everyday life and death: A socio-legal study of chronic disorders of consciousness. Law and Society Conference, Boston, 30 May-2 June 2013; and at: Law on the Edge, 1-4 July 2013, University of British Columbia. It will be submitted for publication in a peer-reviewed journal over the Summer. Simon Halliday is presenting a paper on ‘The Costs of Withdrawing Life-Sustaining Treatment from PVS Patients in England & Wales’, to the Annual Meeting of the Law & Society Association in Minneapolis, USA on 30th May, 2014.

4. Fictional representation of 'coma'
Analysis of contemporary literary texts that represent chronic disorders of consciousness shows that fictional and autobiographical writing are important sites for the formation and renegotiation of wider cultural understandings of coma. Interview data suggests that a particular concern for families and carers is the problem of the voicelessness of individuals in vegetative and minimally conscious states. Isabel Allende's 'Paula' (1995) takes up this problem of voice through a hybrid literary form that draws on personal memoir, national history, magical realism and the epistolary novel, to explore the aesthetic and ethical problems of representing and speaking for a voiceless loved one. 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). Findings have already been presented through a paper and panel discussion alongside three academics from other disciplines at a BookTalk public engagement event on Allende's Paula which formed part of the Before I Die Festival at the University of Cardiff in May 2013. The findings will also be presented at the Annual Medical Humanities Conference on 'Global Medical Humanities' at the University of Aberdeen in July 2013. An article will be submitted to the Journal of Medical Humanities in June 2013.


5. Advance Decisions and CDoCs
Analysis of our interview data shows that ten times the national average (30% as contrasted with 3%) of people with relatives in chronic disorders of consciousness have completed advance decisions to refuse medical treatment. We explored the nature of these ADs (i.e. what exactly they were refusing and under what circumstances) as well as the reasons why 70% had NOT completed ADs and find (a) that the draconian ADs completed by some of our interviewees could lead to unwanted premature deaths or survival in exactly the states they were trying to avoid; (b) that even this select group of participants are either ignorant of the existence of ADs, believe they will not work in practice, or believe that next-of-kin have decision-making rights over an incapacitated relative. These findings and their implications were presented to the ESRC Seminar Series on Advance Decisions (Kitzinger & Kitzinger 2012) and will be submitted to a peer-review journal.


COLLABORATIONS
1. Major collaboration with the Cardiff Chronic Disorders of Consciousness Research Group. We are sharing the same data set and producing co-authored publications
2. The PI (Celia Kitzinger) is also a PI on an ESRC Seminar Series grant on Advance Decisions - these are legal documents which permit an adult with mental capacity to refuse, in advance, life-prolonging treatments (e.g. ventilator, CPR, artificial nutrition and hydration) if they should in the future become unable to make their own decisions (e.g. brain injury, coma, dementia). The cross-over between the ESRC project and the research of this group has been very productive - since the rise of ADs was prompted in part by media publicity about chronic disorders of consciousness and people's concern not to be kept alive 'as a vegetable' and we have an article in preparation about ADs and families of patients with chronic disorders of consciousness.
3. Dept of Primary Health Care, University of Oxford (for ESRC-funded Knowledge Exchange research, which is a three-way Cardiff-York-Oxford grant)

CONFERENCES
9 May 2014 – Withholding and Withdrawing Treatment from Patients in a Vegetative or Minimally Conscious State (10am – 5pm)
A conference jointly organised by CDoC and the Court of Protection Practitioners’ Association. A range of legal experts, clinicians and social scientists will discuss the ethical, clinical, philosophical, economic, and sociological perspectives of withdrawing treatment from vegetative and minimally conscious patients. Keynote speaker: Mr Justice (Sir Jonathan) Baker of the Family Court Division.

3rd July 2014 – Glenside Annual conference
We will be discussing the implications of our research for care centres at this conference focussed on the ethical issues in detention of patients with highly complex neurological problems.

STAFF
Principal Investigator: Celia Kitzinger (Sociology)
Co-Investigators: Simon Halliday (Law), Sarah Nettleton (Sociology), Stephen Holland (Philosophy & Health Sciences) and (since the second grant award) Alice Hall (English).
David Stocks was made non-stipendiary Research Associate in the Department of Philosophy in order to analyse interview data (1.1.14 - ongoing).
C2D2 intern Dr Adam Formby


COMMERCIALISATION/TRANSLATION/ENGAGEMENT
The research of CDoC prompted a collaboration with a poet, James Nash, from whom we commissioned 3 sonnets about coma. We met with James and talked about our research, shared transcripts of the interviews with him, and commented on drafts of the poems. He read these sonnets in public for the first time at the Cardiff 'Before I Die' Festival (14-20 May 2013)

We produced a short YouTube film designed to introduce some of the key strands of our work – and also to portray more realistic representations of ‘coma’ – challenging the misleading ‘sleeping beauty’ images so often used in the media. We developed this film working with three actors, and producer Patrick Titley, with assistance from Lisa Burch, in the Department of Theatre, Film and Television at the University of York.

We have shared our research findings and interview extracts (including original audio) with composers to inform original compositions of both classical music and ‘doom metal’. Eliza Gregory is working on a doom metal musical composition designed to evoke the sense of dread that permeates many descriptions provided by families of people in PVS and MCS. We have also shared our data with Adrian Burch, a musician with extensive experience of composing music for documentaries for national television; we are working with Adrian to produce some music usable both as a stand-alone and, we hope, to contribute to the BBC programme “Between the Ears”.

13 March 2014 – The House of Lords post-legislative scrutiny of the Mental Capacity Act 2005
CDoC gave evidence to the House of Lords committee scrutinising the Mental Capacity Act 2005. Our evidence, along with evidence from over 200 others, informed the conclusion that professionals involved in the care of vulnerable adults are often not aware of the Mental Capacity Act, and are failing to implement it. The Committee is recommending that an independent body is given responsibility for oversight of the Act in order to drive forward vital changes in practice [www.parliament.uk/business/committees/committees-a-z/lords-select/mental-capacity-act-2005/news/mca-press-release---13-march-2014/]

11-17 May ‘Before I Die’ Festival
Various members of the Cardiff-York Chronic Disorders of Consciousness Research Centre will be presenting at a series of public engagment events in York during the ‘Before I Die’ festival. We will be involved in panels debating the law and the minimally conscious state, a discussion of advance decisions and a reflection on the meaning of death and the role of funerals. (For further information see www.beforeidiefestival.co.uk)

APPLICATIONS SUBMITTED
Successful application submitted to ESRC for Knowledge Exchange Grant preparing a unit on chronic disorders of consciousness for Health Talk Online

ARTICLES SUBMITTED
Hall, A (in press) ‘Representing chronic disorders of consciousness: voice in Isabel Allende’s Paula’, Literature and Medicine, 32(1). Spring 2014
Kitzinger, J (in press) ‘Media representation of science and health: the case of coma’ in Miller, T (in press) The Routledge Companion to Global Popular Culture, Routledge
Kitzinger, C and Kitzinger J (in press) ‘Grief, anger and despair in relatives of severely brain injured patients: responding without pathologising’, Editorial. Clinical Rehabilitation, July 2014
Kitzinger, C and Kitzinger J (in press) ‘This in-between’ – how families talk about death in relation to disorders of consciousness’, in Van Brussels, L and Carpentier, N (eds) The Social Construction of Death: interdisciplinary perspectives. Palgrave

ARTICLES PUBLISHED
Holland, S, Kitzinger C and Kitzinger J (2014) ‘Death, treatment decisions and the permanent vegetative state: evidence from families and experts‘, Medicine, Health Care and Philosophy
Kitzinger, C and Kitzinger J (2014) ‘Withdrawing artificial nutrition and hydration from minimally conscious and vegetative patients: family perspectives‘, Journal of Medical Ethics
Kitzinger, C and Kitzinger, J (2013) Evidence submitted to: House of Lords Select Committee on the Mental Capacity Act 2005
Halliday, S, Kitzinger, C & Kitzinger, J (2014) ‘Law in everyday life and death: A socio-legal study of chronic disorders of consciousness‘, Legal Studies
See above for conference presentations which will be submitted as articles to peer-reviewed journals.
Kitzinger, J and Kitzinger, C (2012) ‘The “window of opportunity” for death after severe brain injury: Family experiences’, Sociology of Health and Illness [or download executive summary only below]