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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.

Artwork depicting a figure in blue set against a red backdrop

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.

The Cardiff research has been important not just for the typical vegetative state or minimally conscious state patients … but also for a broad spectrum of patients… the direct impact of their research, and its impact via the court cases building on their work, thus has both deep significance and a scope that expands well beyond the original focus.
Dr John Chisholm Chair of the BMA working party on Clinically Assisted Nutrition and Hydration

Key results

  • 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.

Jenny’s expert knowledge of a wide range of families’ experiences allowed sterile issues to be brought to life…[Coma Songs] opened up new ways of thinking for our audiences by challenging understanding of what it means to be in a vegetative or minimally conscious state …contextualising Hollywood romanticisation and media stereotypes of these conditions, and sharing insight into families’ journeys and the social, clinical and legal context.
Llinos Jones Co-producer, Coma Songs, BBC Radio 3