Improving end of life decision making
Our research stimulated debate about the treatment of people in vegetative and minimally conscious states.
End of life decisions for people in vegetative and minimally conscious states involve difficult clinical, ethical and risk judgements and are subject to intense media interest, rapidly evolving legal and policy rulings and scientific enquiry.
Our researchers stimulated debate about the treatment of people in such conditions to create new ways of dealing with end of life decision-making.
The 'Risk, Science, Health, and Media' research group within our School of Journalism, Media and Cultural Studies examines cultural representations, public attitudes and policy in relation to science and health issues.
The team's work on the vegetative/minimally conscious states included reviewing existing literature and mapping out issues and gaps from a humanities/social science perspective. They analysed media reporting, examined the use of technologies and carried out interviews both with clinicians and over 50 families, focusing on decision-making about serious medical treatments.
The team also carried out an in-depth interview/focus group study in three specialist neurological units - examining experiences of long-term care provision.
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).
A guiding light
This portfolio of research, conducted in collaboration with colleagues at the University of York, 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.
The research influenced the Royal College of Physicians' Working Party revising the College's treatment guidelines. It generated interest from stakeholders, including medics and policy experts; informed new training materials and prompted changes in thinking among clinicians.
This on-going research has been turned into a half-hour BBC3 radio programme and was cited in the House of Lords report on the Mental Capacity Act 2005, supporting recommended change. The research is also featured on the Health Talk website and was used by over 2,000 people in the first few weeks of launch.
The work also informed broader public engagement activities about death and dying.
- 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 (3), pp.1-15. (10.18573/j.2013.10244)
- Kitzinger, J. and Kitzinger, C. 2013. The 'window of opportunity' for death after severe brain injury: family experiences. Sociology of Health & Illness 35 (7), pp.1095-1112. (10.1111/1467-9566.12020)
- Latchem, J. and Kitzinger, J. 2012. What is important to residents with neurological conditions and their relatives in rehabilitation and long-term care centres?. Project Report.[Online].Cardiff: Cardiff UniversityAvailable at: http://www.cardiff.ac.uk/jomec/resources/Long_Term_Care.pdf.
- Kitzinger, J. 2010. Disorders of consciousness: shaping a medical humanities initiative. Other. Cardiff: Cardiff UniversityAvailable at: http://cardiff.ac.uk/jomec/resources/Kitzinger2010DiscussionPaperDisorders.pdf.