This 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.
Jenny Kitzinger and Celia Kitzinger's paper on "Proper Medical Treatment" was presented part of this Wellcome-funded seminar which explored the notion of something being ‘proper medical treatment’ - the medical exception discussed in R v Brown, R v Bland and by the Law Commission in 1994. Contributors included legal academics, bioethicists, clinicians, regulators and policy-makers. The 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.
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.
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 presented a paper (based on joint research with Jenny Kitzinger) 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.
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 former research assistant, Ben Saunders and contributes to the methodological literature on anonymising interviews and sharing sensitive data with research teams.
James 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 both Celia Kitzinger and Jenny Kitzinger (Cardiff University) about their research on family experiences.
James Nash says: "I have worked with visual artists, musicians and composers in the past and each collaborative experience has been immensely enriching But this was an unusual collaboration and a very powerful challenge. Like most commissions of substance the writing had many scary moments. One wants to say something ‘true’ and powerful but also show respect to those whose experience is more personal, more ‘real’ than one’s own as an imaginative writer."
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 exploring the possibility of working with creative artists in other fields (music, dance, theatre) to co-produce new works to engage audiences in challenging and thought-provoking ways.
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 York-Cardiff Chronic Disorders of Consciousness Research Group. 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 recently 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’.
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]
Alice Hall gave a talk at ‘BookTalk’ at Cardiff University’s ‘Before I Die - a Festival for the living about dying’ alongside Professor Celia Kitzinger (York), Professor Jenny Kitzinger (Cardiff) and Dr Montserrat Lunati (Cardiff).
‘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.
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.