Improving decision-making for patients in vegetative and minimally conscious states
From expression through art and drama to a landmark Supreme Court judgment, Professor Jenny Kitzinger and Professor Celia Kitzinger’s research has had a profound effect on the representation of, and support afforded to, those in prolonged disorders of consciousness.
An action-research approach
There are estimated to be up to 64,000 patients maintained in vegetative or minimally conscious states in the UK. Research by the two Cardiff professors sought to understand more about the decision-making for such patients as well as the support available for their families.
Through discussions with families, analysis of relatives’ experiences, scrutiny of media representations, and interviews with clinicians and lawyers, their work identified cultural misrepresentation and knowledge gaps about vegetative and minimally conscious states, and pin-pointed problems with the medical and legal framework around decision-making for these patients.
Support, representation, and reform
Professors Jenny and Celia Kitzinger have been lauded for the huge impact their work has had on the treatment of those with prolonged disorders of consciousness.
Their research also helped galvanise the collective movement and action which led to better support for families, better understanding and representation of end-of-life care in the media, and changes to legal and medical practice. The four key strands to their research impact can be summarised as follows.
- New cultural representations: through art collaborations, theatre performances, digital stories, interviews and dedicated radio shows, the research helped improve understandings of preparing for end-of-life and related legal and medical ramifications.
- Support for families: the research was translated into an accessible resource for families on the Healthtalk website. It is considered the go-to resource by leading professionals and has won awards for its explanation of ethical issues and its impact on public perceptions.
- Legal practice reform: the research informed family advocacy, and case law, and there was a landmark Supreme Court judgment, which experts believe would not have happened without this research.
- Improvements to clinical practice: the research informed policy documents and was used by both the Royal College of Physicians and the British Medical Association in developing new professional guidance and training materials.
- Since 2014, there have been 42,700 unique users and 420,000 repeat visits to the online ‘healthtalk’ resource developed by the researchers, with visitors from around the world.
- Families have been empowered to address their relatives’ care and advocate on their behalves in both medical and legal settings – directly leading to court hearings and informing important legal developments
- A 400% increase in calls and over 10,000 website visits to Compassion in Dying following Professor Jenny Kitzinger’s extended appearance on Radio 4’s PM programme.
- 100,000 listeners to BBC Radio 3’s Coma Sounds programme, co-produced and presented by Professor Jenny Kitzinger.
- Over 1800 clinical professionals attended lectures & training to improve their knowledge and understanding of the treatment of patients in prolonged disorders of consciousness.
- Kitzinger, J. and Kitzinger, C. 2018. Why futile and unwanted treatment continues for some PVS patients (and what to do about it). International Journal of Mental Health and Capacity Law 23 , pp.84-149.
- Kitzinger, J. and Kitzinger, C. 2017. Causes and consequences of delays in treatment-withdrawal from PVS patients: a case study of Cumbria NHS Clinical Commissioning Group v Miss S and Ors  EWCOP 32. Journal of Medical Ethics 43 , pp.459-468. (10.1136/medethics-2016-103853)
- Kitzinger, J. and Kitzinger, C. 2016. Court applications for withdrawal of artificial nutrition and hydration from patients in a permanent vegetative state: family experiences. Journal of Medical Ethics 42 , pp.11-17. (10.1136/medethics-2015-102777)
- Latchem, J. , Kitzinger, J. and Kitzinger, C. 2016. Physiotherapy for vegetative and minimally conscious state patients: family perceptions and experiences. Disability & Rehabilitation 38 (1), pp.22-29. (10.3109/09638288.2015.1005759)
- Kitzinger, J. 2015. Media representations of science and health: the case of coma. In: Miller, T. ed. The Routledge Companion to Global Popular Culture. Routledge Companions London: Routledge. , pp.333-341.
- 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)