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 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. (Participants, around 25 practitioners)
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 (firstname.lastname@example.org).
November 2013 – Reflections on making the Chronic Disorders of Consciousness Film
Celia 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 care‘ at 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
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.
- 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 Brown, R 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
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
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.’
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
27 November 2014, Princess Alexandra Hospital, Brisbane, Australia. We presented our research to an audience of hospital staff (with simultaneous live webcasting to another hospital) and this led into a discussion about decision-making in intensive care, the role of pastoral care and the legal context in Australia.
25 Nov. 2014, Australian Centre for Health Law Research, Brisbane. We presented a seminar discussing translation of research and showcasing our new www.healthtalk.org module on family experiences of VS/MCS.
24 Nov. 2014, Gold Coast Hospital, Brisbane – a public lecture (with simultaneous webcast to a second hospital) on end-of-life decision-making and the vegetative state.
13 Nov. 2014, The Centre for Values, Ethics and the Law in Medicine, University of Sydney. We presented on: “Translating academic work relating to values, ethics and law”, highlighting our new healthtalk.org multimedia web resource for professional training.
3 Nov. 2014, Concord Hospital, Sydney. We presented our research to health care practitioners, social workers and pastoral care professionals (with simultaneous web-cast to a second hospital site)
11 November 2014, St Vincent’s Hospital, Sydney. Jenny Kitzinger led a discussion with the hospital ethics committee, reflecting on the ethical, legal and clinical challenges around disorders of consciousness.
30 October 2014, University of California, San Francisco. Seminar at The Institute for Health and Ageing and the Dept of Social and Behavioral Sciences. We presented on: “End of life planning and the vegetative and minimally conscious state”
24 October 2014 Training for Advocates at Irwin Mitchell, Newcastle. We gave a talk on a training day for Independent Mental Capacity Advocates (and other advocates) at the solicitor’s offices in central Newcastle alongside Jackki Cowley of Empowerment Matters. Our focus was on the healthtalk.org resource with additional time (by request) on Advance Decisions (ADs). There is an interest in capacity building amongst advocates in advice and information about ADs.
16-19 October 2014 in San Diego, California. We presented our work at annual conference of the American Society for Bioethics and Humanities (ASBH) 2014 as part of an international panel on “Improvising Humanity: Using Applied Arts to Improve End-of-Life Care” . We also presented a poster entitled “Inclusivity and the insider/outsider debate: Interrogating empirical data in ‘coma’ research and including family experience in public/professional debate”
16 October 2014 We gave a talk, showcasing the healthtalk.org resource at the conference organised by Switalskis Solicitors The Mental Capacity Act 2005: Sixth Annual Review at the Merchant Adventurers Hall, York. The conference was attended by more than100 solicitors, healthcare practitioners, advocates and others whose work involves Court of Protection business (including the Official Solicitor).
11 October Broadcast of ‘Between the Ears: coma songs‘, Radio 3, 10pm
A half-hour programme using our research to explore coma and the vegetative and minimally conscious state using words, music, poetry and sound. Jenny Kitzinger served as co-producer for the programme, alongside Llinos Jones from Terrier Productions.
10 October 2014 Training for Advocates at Irwin Mitchell, London. Celia Kitzinger gave a talk on a training day for Independent Mental Capacity Advocates (and other advocates) at the solicitor’s offices in central London alongside Jackki Cowley of Empowerment Matters. Our focus was on the healthtalk.org resource.
30 September 2014 Training for Advocates at Irwin Mitchell, Manchester. Celia Kitzinger and family member Margaret Kellas, gave a talk on a training day for Independent Mental Capacity Advocates (and other advocates) at the solicitor’s offices in Manchester alongside Jackki Cowley of Empowerment Matters. Our focus was on the healthtalk.org resource
24 September 2014, St George’s Hospital, London Neuro Intensive Care Unit. ‘Introducing the healthtalk.org module on Family experiences of vegetative and minimally conscious states – reflections for intensive care’ Celia Kitzinger and Jenny Kitzinger, led a training discussion with neuro-intensive care practitioners, using our new online resource at www.healthtalk.org/peoples-experiences/nerves-brain)
17 September 2014, Launch of our new healthtalkonline module, London. We launched our new healthtalk.org module on vegetative and minimally conscious states to an audience of over 100 practitioners. This online resource uses filmed interviews with family members to cover issues ranging from diagnosis to decision-making. It is a resource for families confronting the challenges of having a relative in a disorder of consciousness and also provides material for professional training (e.g. in relation to communication and best interests discussions). The launch event included a panel presentation including members of our advisory group such as Professor David Menon and Professor Lynne Turner-Stokes, and representatives from Headway and from family members who participated in the project. [http://www.healthtalk.org/peoples-experiences/nerves-brain]
11 Sept. 2014, “Futures in Question” conference, Goldsmiths, London. Julie Latchem presented as part of a multidisciplinary collaboration between academics and artists, creating a multimedia performance exploring ‘promise’ through a series of topics, including vegetative and minimally conscious states. The performance included extracts of the filmed interviews from the healthtalk.org resource (selected and worked on by Julie Latchem) and was screened at Goldsmiths University’s ‘Futures in Question’ conference 2014.
14 August 2014 – Keynote, Third Applied Qualitative Research in Psychology Conference, Derby. An invited address by Celia Kitzinger highlighting our various projects, especially the new healthtalk.org resource. For a review see: http://www.socialpsychologyuk.net/sps_blog.html?part_id=176957&post_id=18617&action=view_comments
21st-22nd July 2014 “Personhood” – Cardiff-York Chronic Disorders of Consciousness Research Centres group meeting (York University )., discussing different disciplinary approaches to personhood in the context of ‘coma’.
July 2014 Simon Halliday presented our paper “Law in Everyday Life and Death: A Socio-Legal Study of Chronic Disorders of Consciousness” at 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’.
3 July 2014 – “Caring for those who cannot decide: Clinical, safeguarding and legal aspects of neuro-rehabilitation for those who lack capacity”. (Glenside conference) Jenny Kitzinger gave a presentation to around 100 practitioners of our work on ‘Serious medical treatment decisions and best interests’. We also exhibited the postcard exhibition.
June 2014 – Simon Halliday presented our paper “Law in Everyday Life and Death: A Socio-Legal Study of Chronic Disorders of Consciousness” at the Annual Meeting of the Law and Society Association, Boston, June 2014, Simon delivered the paper in a session on law and health.
18 June 2014 “Medicine, Science and Culture Research Group’. Julie Latchem presented on: “Safeguarding the future for an incompetent self: the case of ANH withdrawal in disorders of consciousness”, Cardiff University.
16 June 2014 – Annual Meeting of the Law & Society Association, Minneapolis, USA. Simon Halliday presented on “The Costs of Withdrawing Life-Sustaining Treatment from PVS Patients in England and Wales”.
12 -13 June 2014 – “Challenging the Limits: Recent advances in the assessment, diagnosis and MDT management of people with disorders of consciousness.” (Liphook, Hampshire, UK) Julie Latchem and Jenny Kitzinger gave presentations at this conference organised by Holy cross care home group. Jenny talked about “Supporting families and exploring their concerns: introducing the HealthTalkOnline module for people with a relative in a vegetative or minimally conscious state“, Julie presented on: ‘Physiotherapy for people in disorders of consciousness‘.
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 discussed 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. Withdrawing Treatment Information (PDF , 519kb)
11-17 May ‘Before I Die’ Festival
Various members of the Cardiff-York Chronic Disorders of Consciousness Research Centre presenting at a series of public engagement events in York during the ‘Before I Die’ festival. We were 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)
30 May 2014 – Wales Medical Sociology. Julie Latchem presented on “Physiotherapy for brain injured bodies: Family perceptions” (Cardiff University).
30 May 2014 – Annual Meeting of the Law & Society Association, Minneapolis. Simon Halliday presented 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.
19 April 2014 – Our Radio Wales programme Another chance to hear our programme ‘Living Wills: what would you want?’ on Radio Wales http://www.bbc.co.uk/programmes/b0380n5c
April 2014 – ‘Digital Stories’ about serious brain injury – pilot grant
We have been awarded an ‘Impact and Engagement’ grant from Cardiff University’s School of Journalism, Media and Cultural Studies. Working with Dr Jenny Kidd and Lisa Heledd Jones (storyworksuk), we will be revisiting our research interviews to develop short, creative films about serious brain injury, including a story exploring cutting edge neuro-technologies such as deep brain stimulation.
April 2014 – ‘Impact through Art’ initiative
Cardiff University was awarded seedcorn funding to CDoC to explore how our research findings can be expressed via diverse media of visual art (working with artist, Seth Oliver) and shadow puppet theatre (working with ‘theatreoflight.co.uk’). This initiative will complement the seedcorn funding provided by University of York to work with two musicians and two visual artists to explore representations of coma.
27 & 28 March, 2014 Royal Hospital for Neuro-disability’s first international symposium on rehabilitation after brain injury
Over two days a panel of national and international experts discussed: ‘How to navigate the rehabilitation landscape’ (Day 1) and ‘Changes and challenges in Disorders of Consciousness’ (Day 2). We presented our research on family perspectives, and showed some of the filmed interviews with families collected for the healthtalkonline website.
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 March 2014 – ‘The Diving Bell and the Butterfly’, Public Discussion
We joined a ‘Sci-Screen’ public engagement discussion of representation of locked-in syndrome in the film based on the novel by Jean-Dominique Bauby. We presented evidence from our research about the confusion between ‘locked in’ syndrome and serious brain injury, alongside experts discussing neuroscience and literature.
27 Feb, 2014 Lent Lectures – Kings College London
Celia Kitzinger presented: ‘Negotiating Selves: Insider/outsider research on chronic disorders of consciousness’
13 February 2014 – Open lecture series at the Royal Hospital for Neuro-Disability
Jenny Kitzinger presented our research findings about: ‘The Mental Capacity Act and family experiences of best interests’ to an audience of clinicians specialising in neuro-rehab and the care of individuals in disorders of consciousness.