2. Improving decision-making about treatment for people in vegetative and minimally conscious states
Submitting InstitutionCardiff University
Unit of AssessmentCommunication, Cultural and Media Studies, Library and Information Management
Summary Impact TypeSocietal
Research Subject Area(s)
Mathematical Sciences: Statistics
Medical and Health Sciences: Public Health and Health Services
Summary of the impact
This research stimulated debate about the treatment of people in
vegetative and minimally conscious states, created new cultural
representations and informed interventions to enhance decision-making
processes. Professor Jenny Kitzinger [JK], the lead researcher,
was invited onto the Royal College of Physicians' Working Party revising
the College's treatment and communication guidelines. The research
generated intense engagement from key stakeholders (e.g. medical and
policy experts), prompted changes in thinking among clinicians and
informed new training and support materials for both clinicians and
families. The findings also enriched public discussion about this highly
contentious area of medicine and ethics e.g. through a series of
media/cultural interventions and through community engagement events which
had a documented impact on participants' knowledge and feelings.
The `Risk, Science, Health, and Media' research group within the
Cardiff School of Journalism, Media and Cultural Studies (JOMEC) has a
long-standing tradition of examining the communication and representation
of health/science issues. Under the directorship of JK (Professor of
Communication Research in JOMEC, 2003 onwards) we have focused on
enriching public/policy debate about ethics, cultural representation and
the social context of medicine/science (see REF3a). The case study
presented here highlights one such initiative, focussed on
vegetative/minimally conscious states. Such states are a shifting
scientific, socio-political phenomenon, with a complex cultural history.
Increasing numbers of people are now surviving catastrophic brain injuries
- partly because of developments in medical technologies. The `vegetative'
state was identified in 1972, the `minimally conscious' state in 2002 (to
describe patients who display very minimal/intermittent consciousness).
Treatment decisions about these patients involve difficult clinical,
ethical and risk judgments and are subject to intense media interest,
rapidly evolving legal/policy rulings (e.g. recent court cases) and
scientific enquiry (e.g. fMRI brain scans of `vegetative' patients). A
portfolio of 4 initiatives was developed by JK involving:
Project 1: a review of existing literature on
vegetative/minimally conscious states mapping out issues and gaps from a
humanities/social science perspective. This was circulated to key
practitioners in 2010 and underpinned a successful bid by JK to the
Wellcome Trust for a symposium with leading stakeholders (see Section 3,
Project 2: an analysis of media reporting and press
releases, focusing on the reporting of emerging brain technologies for
vegetative patients, combined with interviewing families with experience
of such technologies (2011-12) (see Section 3, publication 2).
Project 3: an in-depth interview/focus group study in
three specialist neurological units - examining experiences of long-term
care provision (2011-12) (see Section 3, publication 3).
Project 4: an interview study with over 50 clinicians
and families - focusing on decision-making processes, from intensive
care to courts (2010-present) (see Section 3, publication 4).
Researchers involved: Project 1: JK solely responsible. Project
2: Collaboration between JK and Gabby Samuels, Brunel University -
Samuels conducted the interviews, JK led on designing the project and
developing the media coding and co-wrote the final analysis. Project
3: Collaboration between JK and Julie Latchem, clinician at a
neuro-specialist care home - both equally involved in all aspects of the
project (design, data collection, analysis and writing up). Project 4:
collaboration between JK and Celia Kitzinger, Sociology Professor,
University of York - both equally involved in all aspects of project
(design, data collection, analysis and writing up).
Findings: This portfolio of research gave a multi-dimensional view
of the profound challenges for service-users, care-providers and policy
makers and identified gaps and tensions in clinician-family communication,
media representation and the surrounding public, legal, professional and
policy debates. Key findings included:
- Media stereotypes of the vegetative patient e.g. such patients are
routinely shown on television as if asleep with their eyes closed, but
eye-opening is a defining feature of the condition, and patients may
move and make sounds - a mismatch which contributes to conflict between
popular/family expectations and mainstream clinical diagnoses/prognoses.
- Lack of clarity in reporting new scientific developments such as fMRI
scans on `vegetative' brains (e.g. failing to distinguish the
`vegetative' from the `minimally conscious' state) and a lack of
cultural representation of profound impairments associated with recovery
from the vegetative state - which has implications for how families
imagine possible outcomes and impacts on clinician-family communication
- Lack of accessible and accurate information for families, and lack of
support for families and clinicians making difficult decisions, combined
with misunderstandings about the legal framework for treatment under the
Mental Capacity Act 2005 (e.g. the media-promoted misconception that
`next of kin' can consent to treatment on an adult relative's behalf -
which is not the case in the UK).
- Fragmentation of decision-making between different clinicians and
different professions (e.g. clinical and legal) and concerns about
continuity and quality of long-term care.
- A cultural taboo about discussing end-of-life wishes, and a lack of
public information about how to draft legally binding advance decisions
in relation to medical treatment (e.g. some patients had previously
expressed strong views regarding refusing treatment in such situations,
but these were not legally binding because not in writing with a witness
- Cultural/psychological/clinical/legal issues around the role of risk
and `hope' and tensions around the `windows of opportunity' for
treatment withdrawal and the uncertainty of prognosis early on (i.e.
efforts to sustain life and allow a full assessment early on can leave
some patients suspended in states incompatible with their prior
expressed wishes - by which point they have become physiologically
This multi-pronged initiative created an unprecedented in-depth study of
service-users/family experience; produced a detailed examination of the
media/cultural framing of these issues and compared these to both
family/clinical experience and the scientific research. It also tracked
decision-making over time and space (crucially across different
treatment/decision-making sites); and located these processes in their
cultural/medico-legal context in England and Wales since the
implementation of the Mental Capacity Act [MCA] 2005. The breadth and
depth of the research portfolio allowed for the development of a series of
strategies for enriching media representation, improving
professional/public debate and supporting good practice.
References to the research
1. Kitzinger, J (2010) `Disorders of consciousness - shaping a
medical humanities initiative', Cardiff University (http://bit.ly/HsHmfc).
Evidence of quality: enrolled key figures and formed the basis for
successful application to the Wellcome Trust (£5K symposium award, `Coma,
consciousness and serious brain injury', 28.3.11 - 27.9.11) (Project 1).
2. Samuel, G and Kitzinger, J (2013) `Reporting
consciousness in coma: media framing of neuro-scientific research, hope
and the response of families with relatives in vegetative and minimally
conscious states', JOMEC Journal pp. 1-15 (http://bit.ly/17wUbBa)
Peer reviewed (Project 2).
3. Latchem, J and Kitzinger, J (2012) 'What is important to
residents with neurological conditions and their relatives in long-term
care centres?', Research Report, Cardiff University (www.cardiff.ac.uk/jomec/resources/Long_Term_Care.pdf).
Evidence of quality: positive response from staff /service users and cited
in new guidelines from the British Society for Rehabilitation Medicine
(see section 5, document 5) (Project 3).
4. Kitzinger, J and Kitzinger, C (2013) `The "Window of
Opportunity' for death after severe brain injury: family experiences', Sociology
of Health and Illness. 35(7): 1095-1112 (Available online since
2012) DOI:10.1111/1467-9566.12020 (Output listed in REF2 - 4082). Evidence
of quality: peer reviewed, also formed the basis for a successful bid to
the Rockefeller foundation for a residential scholarship (November 2011) (Project
Details of the impact
Developed new networks and initiatives among stakeholders: JK's
(2010) review paper (publication 3.1 above) initiated dialogue between
medical and legal experts and the subsequent Wellcome Trust funded
symposium she organised brought 18 key stakeholders together for
intensive (over two days) and Chatham House rule discussion. (For public
record of symposium see
http://bit.ly/1gUFEmJ). Subsequent initiatives prompted by this
included two participants who met via the symposium working together to
pilot the use of `patient advocates' in intensive care (Lee, Mental
Capacity Advocate Expert and Chatfield, Clinical Research Sister,
Critical Care) and two others becoming involved in an ESRC seminar
series to look at the role of advance decisions (Clements, Solicitor/Law
professor and Bell, consultant in intensive care). Another participant,
Ethics Manager at the British Medical Association (BMA), blogged about
the symposium and went on to organise an event for doctors to debate the
issues raised (after the `M' court case in Autumn 2011 - the first ever
court case considering the potential withdrawal of artificial nutrition
and hydration from a `minimally conscious' patient).
Informed debate and guideline development: The research was
recognised early on as having great potential to inform debate and
guideline development. For example, a barrister emailed in response to
the circulation of a draft paper: `This article is really
extraordinary. I am absolutely certain that it must be put before any
judge who looks at an MCS [minimally conscious] case in the future.
When it is published, please would you send me the citation so that I
can send it to the Official Solicitor and other barristers and
solicitors who work in this area' (Butler-Cole, leading barrister
- see `Sources to corroborate' 5.8). A clinician and member of The
European Task Force on Disorders of Consciousness wrote: `we start
where others stop (neurologist). And we have to face with families the
consequences of early decisions. So I use your work. It's part of
every presentation in and outside the Netherlands. And part of ethical
debates we have in nursing homes who care for patients' (see 5.9).
The research was used in drawing up new nursing home guidelines
developed by the British Society of Rehabilitation Medicine (BSRM) and
JK was invited onto the core editorial group of the Royal College of
Physicians' Working Party on the vegetative state (rewriting
guidelines which are the touchstone for good practice and for the
courts). She was also asked to join the Nuffield Council on
Bioethics investigation into `novel interventions into the brain'
- leading to the development of guidelines for journalists/press
officers/scientists. Documentary evidence of impact includes citations
of Project 2 in the Nuffield Report; Project 3 in the BSRM guidelines
and Project 4 in the RCP guidelines - see Section 5,
corroborating documents 3, 5 and 1.
Contributed to new support/training resources: The research
informed the drafting of a `best interest' decision pro-forma for
clinicians developed with a neuro-rehab specialist and JK was asked to
advise on a piece of educational theatre about family experiences
performed at the 2012 `Medical Ethics and Law' conference (which
was filmed and made available as an on-line teaching/debating tool by
the BMA). She also advised on a leaflet produced by Headway (the brain
injury support charity) on `Supporting People to Make Decisions'
(document 5.4) and wrote a booklet about the experience of families in
decision-making for vegetative patients which was adopted as an official
supplement to the new Royal College of Physicians' guidelines (document
5.2). She is now working on an ESRC-funded initiative (with
the DIPEx charity and University of York and Oxford) to build a
multi-media internet resource for families and professional training
(launch in 2014) (http://bit.ly/1a9F0rK).
Prompted reflection and change among health practitioners: The
research was presented, by invitation, to a wide range of practitioners
e.g. a `Masterclass' at the Institute of Medical Ethics [IME]
Annual Conference and talks to the Brighton and Sussex Medical School
and the Yale School of Medicine (as part of professional development
accredited courses). Presentations between 2010 (when the first research
began) and July 2013 (the REF impact cut-off) directly reached over 500
practitioners (e.g. GPs and intensive care, neurosurgery, rehabilitation
and palliative care specialists). Feedback surveys by event organisers
demonstrated impact on clinicians both professionally and personally.
Comments included: `Very thought provoking - interesting,
emotionally and intellectually challenging and I need/want to go away
and reflect deeply on my view of the MCA [Mental Capacity Act] and its
application because I believe my opinion may have altered slightly'
and `Really brought the Mental Capacity Act and communication
between medics and families into the real world. Definitely going to
go home and make an advance decision' (BMA evaluation report about
JK's session at the IME conference). Practitioners were also influenced
by an exhibition developed as part of the research that involved family
members writing short messages and selecting images (chosen or
drawn/photographed) to represent their experiences. The resulting
`Postcard' exhibition has been displayed at over two dozen venues and
events (e.g. requested twice for display at the BMA's London
headquarters). Feedback from event organisers, and comments in the guest
book (e.g. `haunting', `learned a lot', `unforgettable') suggest that
the exhibition ensured that the voice of families directly affected now
has a presence at key meetings where professionals debate relevant
Enriched public representation/debate: In addition to working
with stakeholders as outlined above, JK has been consulted by
journalists/documentary makers and engaged in debate with them. For
example, she co-authored a critical analysis of a Panorama programme
about the vegetative state that was published as an editorial in the
British Medical Journal (www.bmj.com/content/345/bmj.e8045).
She has also been consulted by fiction writers (e.g. influencing the
representation of a coma ward in the detective novel `Rubberneck')
and served on the advisory board of a Wellcome Trust funded `Theatre
of Debate' play about neurotechnologies (which won a `Science Goes
to the Movies' award from the British Science Association). The research
led to the creation of a set of sonnets through a collaboration with a
poet to transform interview material into poetry (see www.youtube.com/watch?v=HqA-vjB1OvQ/).
It was also presented to a general public via a series of 6 community
events as part of a festival organised by JK - the evaluation of which
identified clear impact on attendees e.g. 93% indicated that attending
had impacted on their thoughts or feelings, and 79% reported they would
share the information gained in their professional or personal lives (http://bit.ly/16ruO0K). JK was
commissioned to produce and present a half-hour programme about the
research for BBC Radio Wales (produced in July 2013, broadcast August
2013), has been shortlisted to create a feature for Radio 3 on
translating research into creative cultural outputs and is currently in
discussion with BBC's `Casualty' about a potential storyline
about the minimally conscious state.
This research has impacted upon a wide range of stakeholders involved in
the care/representation of severely brain injured patients and has led to
the establishment of a new cross-University Research Centre (Cardiff-York)
involving a collaboration of diverse practitioners and disciplines
(including literature, cultural studies, history and philosophy).
Although targeted at addressing the socio-cultural context of the UK, the
research has had an effect internationally. This is evidenced by requests
to translate executive summaries of the research for practitioners, the
use of the research to inform guidelines in the US (see `Factual
Statement' from source 5.7) and the Rockefeller Foundation's production of
a video-interview about part of the research under their `Innovative
Ideas with Global Impact' insignia
Sources to corroborate the impact
- Royal College of Physicians (2013) Report on the management of
prolonged disorders of consciousness. (www.rcplondon.ac.uk/pdoc).
See especially chp 4, chp 5 and p120 where it acknowledges that the
guidelines `drew extensively' on our research.
- RCP Report Supplement (2013) Serious medical decisions regarding
people in vegetative or minimally conscious states: the role of family
and friends. (www.rcplondon.ac.uk/pdoc/family).
This booklet for families was initiated by JK, based on the research
findings (see pp: 1-4) and developed in consultation with the RCP
- Nuffield Council on Bioethics (2013) Novel neurotechnologies:
intervening in the brain. (http://bit.ly/17Bqxc0).
See especially pp. ix, 192-217 and 222-235.
- Headway (2013) Supporting People to Make Decisions (www.headway.org.uk/shop/supporting-people-to-make-decisions.aspx).
See acknowledgements page 52 for evidence of JK's input.
- British Society of Rehabilitation Medicine (2013) 'Specialist
nursing home care for people with complex neurological disability:
guidance to best practice'
See refs to our research, pp.18, 19, 20, 30.
Individuals contactable or supplying testimony to corroborate
- Chair, Royal College of Physicians' Working Party on prolonged
disorders of consciousness (can be contacted to corroborate impact on
- Deputy Director, The Hastings Center for Biomedical Ethics, USA
(provided statement corroborating international significance and impact
on public debate).
- Barrister (can be contacted to corroborate impact among legal
- Physician, project leader: `Long-term care of severe brain injury'
(can be contacted to corroborate impact on clinical debate).