News 2013

12 December 2013 – Launch of the updated Royal College of Physicians’ guidelines on management of patients in vegetative and low awareness states

The research of the York-Cardiff Chronic Disorders of Consciousness group was represented at this conference by Jenny Kitzinger. Jenny presented a reflection on the views and experiences of patients’ families as informed by our own research alongside a systematic review of all available evidence and consultations with families on the draft guidelines. Watch the RCP press conference discussion of the role of the family in serious medical treatment decisions below.


21-22 November 2013 – London Conference of the York-Cardiff Chronic Disorders of Consciousness Research Group,  Royal College of Physicians, London.

A research  bid seminar in conjunction with our practitioner colleagues, including Derick Wade, Consultant in Neurorehabilitation at the Oxford Centre for Enablement and Jan Lavrijsen, a physician at Radboud University Nijmegen Medical Centre specializing in complex and palliative care, and a member of the European Task Force on Disorders of Consciousness.


29 November 2013 – Controversies in Critical Care – to live or let die? Meeting of the Critical Care Medicine Society of the Royal Society of Medicine, London

This meeting covered a range of different areas of controversies within Critical Care Medicine clinical practice with the aim to help shape future practice within the UK. Celia Kitzinger presented on: ‘The ‘window of opportunity’ for death after severe brain injury’


10 November 2013 –   Internship funding with CDoC

The internship will be hosted by The York Chronic Disorders of Consciousness Research Centre, directed by Professor Celia Kitzinger in Sociology, with academic researchers across six York Departments (Sociology, Philosophy/Health Sciences, English and Related Literature, Law and Economics). The intern will receive hands-on training in research methods and will apply and extend their existing health-related expertise to interdisciplinary collaborative research questions relating to patients with chronic disorders of consciousness, their families and treating professionals. The intern will be jointly mentored, spending time in at least three of the different departments. For further details about the project  feel free to contact Celia Kitzinger for more information (celia.kitzinger@york.ac.uk).


November 2013 – Reflections on making the Chronic Disorders of Consciousness Film

filming in intensive care2 copy-218x290filming in a carehome1 copy-218x290Celia Kitzinger received funding from C2D2 to make a film about our research.  We worked with producer Patrick Titley, with assistance from Lisa Burch, in the Department of Theatre, Film and Television at the University of York.  Making this film – which you can view on the front page of our website  – was a challenging experience..

Follow this link for a reflection on the process by Celia Kitzinger 


11th-12th October 2013 – Physiotherapy UK

Julie Latchem presented on Lay perceptions of physiotherapy in neurological rehabilitation and long-term careat Physiotherapy UK, Birmingham, UK.  


24th October 2013 – How can TV drama represent family experiences of long term ‘coma’?

Jenny Kitzinger and Erika Hossington (Series Producer, Casualty, BBC Cymru Wales) presented at an Expertise Exchange event. The event was a collaboration with the Royal Television Society.  It brought together both academic and practice expertise with the aim of giving those involved in TV production an insight into academic scrutiny of their work whilst providing academics with an opportunity to better understand the experiences of those working in the industry.  The spirit of the encounter was to address the question ‘What do we DO about ….?’. We are now in discussions with Erika Hossington a potential storyline for ‘Casualty’ about people in vegetative states.


25 & 26 September 2013 – Chronic Disorders and Diseases Conference, Ron Cooke Hub, University of York

wpostcard_exhibition_C2D2_conferenceThis Chronic Disorders and Diseases Conference was designed to showcase the various research projects funded by Wellcome through its Institutional Strategic Support Fund award to the University of York. A poster about our work and the Postcard Exhibition were on display in the foyer and four members of the group presented snapshots of their current projects.

  • Alice Hall described how Isabel Allende’s Paula brings together fiction and memoir forms to explore important debates about voicelessness in relation to chronic disorders of consciousness.
  • Stephen Holland reported on the ways in which our interview data support the view that permanently vegetative patients are in a strange state, being neither straightforwardly alive nor simply dead
  • Celia Kitzinger discussed the implications of what our interviewees say for end-of-life planning, especially in relation to Advance Decisions to refuse treatment
  • Simon Halliday showed that, in the perceptions of families of patients with chronic disorders of consciousness, law is something of a double-edged sword – both empowering and disempowering in their attempts to negotiate the best interests of their relative.

19 September 2013 – Court of Protection Practitioners Association (CoPPA) National Conference “The Secret Court”: Lifting the Veil on the Court of Protection, MacDonald Hotel, Manchester

CoPPA is an association of practitioners and researchers concerned to protect and promote the efficiency of Courts in England and Wales in dealing with matters relating to the Court of Protection and to further and improve the knowledge of all persons involved and interested in the law and practice of relating to Court of Protection and Mental Health and Mental Capacity issues. Jenny Kitzinger and Celia Kitzinger gave an invited talk entitled: “Withholding/withdrawing life-sustaining treatments and the personal autonomy of people with chronic disorders of consciousness”. Other speakers included Mr Justice Charles, Tim Spencer-Lane from the Law Commission, Yogi Amin, Head of Public Law at Irwin-Mitchell.


12 September 2013 – Transforming wrong(s) into right(s): The power of ‘proper medical treatment’ Chancellors Conference Centre, University of Manchester

We presented as part of this Wellcome-funded seminar which explored the notion of  “Proper Medical Treatment” – the medical exception discussed in R v BrownR v Bland and by the Law Commission in 1994. Contributors included legal academics, bioethicists, clinicians, regulators and policy-makers. Our paper explored how family members construct “proper medical treatment” for their relative and how conflicting views about whether certain medications and procedures (e.g. craniotomy, fMRI scanning, SMART testing, use of tilt tables, clinically assisted nutrition and hydration) do or do not constitute ‘proper medical treatment’ are constructed and negotiated.


11 September 2013 – BSA Medical Sociology Group 45th Annual Conference, University of York

Sarah Nettleton and Celia Kitzinger presented a paper (co-authored with Jenny Kitzinger) on “Sociology of Diagnosis: Chronic Disorders of Consciousness”. The paper drew on recent theoretical advances in the sociology of diagnosis (Jutel & Nettleton 2011) to explore the way in which ‘consciousness’ is constructed by families and clinicians. You can download a pdf of the slides here. Note that the video which was shown during the talk (available here) is not part of our research but is one of a series of videos of 21-year-old Ryan Diviney we found on YouTube. Ryan is in a vegetative (or minimally conscious) state following an assault and his father posted the videos to “Keep Ryan Relevant”. You can read more about Ryan in an article in the Washington Post here.


5-8 September 2013 – Death, Dying and Disposal 11th International Conference – Theory Meets Practice, Open University Milton Keynes

Stephen Holland
Held under the auspices of ASDS (The Association for the Study of Death and Society), DDD11 brought together practitioners and academics from a range of disciplines in the humanities and practice to explore how ideas impact upon the reality of death and dying and how practice impacts upon ideas. Stephen Holland presented a paper entitled “The Definition of Death and the Ethical Treatment of PVS Patients: Evidence from Interviews with Patients’ Relatives”. This paper, drawing on interviews with family members to consider the ontological status of patients in PVS, finds that they are only equivocally alive, and considers the implications of this for withdrawing/withholding life-prolonging treatments, and for active euthanasia.
Celia Kitzinger
Celia Kitzinger presented our research on “Advance Decisions to Refuse Treatment: Knowledge & Experience of Families of Severely Brain Injured Patients”. The paper explored the relatively high uptake of Advance Decisions to Refuse Treatment (ADRTs) among family members of people with chronic disorders of consciousness and analysed their accounts for why they have written them and the sorts of refusals they have made. The social policy implications of these (sometimes draconian) refusals of medical treatment are discussed in relation to the ‘window of opportunity’ for death after catastrophic brain injury.

28-31 August 2013

The Centre presented two papers at the European Sociological Association Conference in Turin, Italy. The first (by Celia Kitzinger & Jenny Kitzinger) documented families’ experience and views of treatment withdrawal (especially withdrawal of clinically delivered nutrition and hydration) from patients in a permanent vegetative or minimally conscious state. The second was first-authored by our research assistant, Ben Saunders and contributes to the methodological literature on anonymising interviews and sharing sensitive data with research teams.


22nd August 2013, 6.30pm (repeat Saturday, 7 am) – Living Wills: What Would You Want?

BBC Wales broadcast a half-hour radio program based on our research examining ‘Advance Decisions’ (‘Living Wills’) and the particular challenges around serious acquired brain injury. Presented and co-produced by Jenny Kitzinger (Cardiff University), this program drews on our interview data with families, and our work with leading practitioners, to explore some of the complex practical and ethical issues around this topic.


August 2013 – Collaboration with James Nash

The poet, James Nash was given access to some of the 50+ (anonymised) interview transcripts with family members of people in permanent vegetative and minimally conscious states and talked with us about our research on family experiences. James has written three sonnets looking at aspects of coma from differing points of view. He gave an inaugural reading of all three at the ‘Before I Die Festival: a festival for the living about dying’, You can read them on his website (http://www.jamesnash.co.uk/) and here you can hear a recording of James talking about the collaboration and reading one of the sonnets.

 The Chronic Disorders of Consciousness Research Centre is now developing new pilot collaborations with diverse creative artists in other fields (music, dance, theatre) to co-produce innovative works to engage audiences in challenging and thought-provoking ways. To hear James read his poems see the Impact’ page on collaborations with artists.


6 August 2013 – Brocher Foundation Hermance, Switzerland

Brocher Foundation
Celia Kitzinger and Jenny Kitzinger were Fellows at the Brocher Foundation in Switzerland which host scientists and experts in the ethical, legal and social implications of the development of medical research and biotechnologies. On 6 August they gave a talk about the work of the Chronic Disorders of Consciousness Research Centre. It was attended by other Fellows at the Foundation, scholars from the University of Geneva, researchers from the World Health Organisation, and representatives of a number of NGOs addressing issues of health and human rights. Simon Halliday presented a paper “Law in Everyday Life and Death: A Socio-Legal Study of Chronic Disorders of Consciousness” at two conferences in North America. At the first conference, the Annual Meeting of the Law and Society Association, Boston, June 2014, Simon delivered the paper in a session on law and health. At the second conference, Law on the Edge: A Meeting of the Canadian and Australian Law and Society Associations, Vancouver, July 2014, the paper was included on a session on ‘Communities at the Edge’. The research examines empirically the significance of cultural perceptions of legality for the ways in which family members negotiate care, treatment and end-of-life decisions in relation to relatives with chronic disorders of consciousness.  These cultural ‘narratives’ of legality, as they are sometimes called, provide the frameworks through which ordinary people make sense of law in everyday life. A full understanding of the role that law plays in this field of health care, accordingly, requires this kind of cultural perspective on the ‘law in action’.

8 July 2013 – Association for Medical Humanities conference

Alice Hall gave a paper at the Association for Medical Humanities conference on ‘Global Medical Humanities’ held at the University of Aberdeen on the 8 July 2013. Her paper, entitled ‘Representing Chronic Disorders of Consciousness: Voice in Isabel Allende’s Paula explored representations of voicelessness in Allende’s memoir. In particular, it focused on the legal, ethical and literary challenges associated with reconstructing the voice or story of an individual in a vegetative or minimally conscious state. Here is her presentatoin to the conference: alice hall presentation [589KB]


20 May 2013 –  Public Seminar on Advance Decisions. Law School, Cardiff University  This public event, organised by Celia Kitzinger,  included  two presentations  from CDoC –  Luke Clements spoke about  ‘The Mental Capacity Act and Advance Decisions’, and Celia and Jenny Kitzinger presented findings about the views of people who have family members in comas, vegetative states and minimally conscious states.  Other speakers were:

  • Professor Penney Lewis, Law School, Kings College London on ADs and the Courts
  • Nancy Berlinger, The Hastings Institute, on the experience of advance directives and other advance planning arrangements in the USA
  • Philip Satherley from the charity Compassion in Dying about the.  template forms and information line they offer
  • Professor Sue Wilkinson, Social Sciences Dept, Loughborough University on what people say about why they want to write Advance Decisions
  • Dr Anne-Marie Slowther, Chair of the UK Clinical Ethics Network and Associate Professor of Clinical Ethics at Warwick Medical School on “What if I change my mind?”

17 May 2013 – Film Discussion, Chapter Arts Theatre,  panel for the ‘Before I Die’ Festival, Cardiff We joined a panel discussion after a showing of  the film ‘Warm Bodies’ at the Chapter Arts Centre in Cardiff. Jenny and Celia Kitzinger presented ‘A reflection on Zombies and chronic disorders of consciousness’. This was part of the week-long  ‘Before I Die’ festival, Cardiff


16 May 2013 – Public Lecture for the  ‘Before I Die’ Festival, Cardiff Jenny Kitzinger presented: ‘A Matter of Life or Death: how the media represents ‘coma’ and the vegetative state … and why it matters’ , Public Lecture, Part of the ‘Before I Die’ festival, Cardiff


16th May 2013 – ‘BookTalk’ at ‘Before I Die’

Alice Hall gave a talk at ‘BookTalk’ at Cardiff University’s ‘Before I Die – a Festival for the living about dying’ alongside Celia and Jenny Kitzinger  and Montserrat Lunati. ‘BookTalk’ is a reading group in which members of the public are encouraged to read a particular text in advance – in this case, Isabel Allende’s Paula – and to take part in discussions about it following a series of talks.’

Before I Die
Before I Die – a Festival for the living about dying – BookTalk: ‘Paula’ by Isabelle Allende, May 16th Alice’s talk focused on the question of genre in Allende’s memoir and argued that Allende’s complex position as writer, narrator and a character in the text tells us something important about an individual carer’s subjective experience of coma. Each of the speakers approached the text from a different disciplinary perspective and this helped to encourage a wide-ranging and lively discussion with audience members afterwards.

15 May 2013 – Lecture to the Institute of Health and Community, Plymouth Celia Kitzinger presented  ‘The “window of opportunity” for death after serious brain injury’, Institute of Health and Community, Plymouth University


31 January  2013 – Practitioner Research Network Meeting, Sue Ryder Care Centre, Queens Medical Centre, Nottingham We presented our paper on ‘End of life planning and chronic disorders of consciousness’ to the Practitioner Research Network Meeting, Sue Ryder Care Centre, Queens Medical Centre, Nottingham