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three students intently listening to lecturer
Brighton & Sussex Medical School

Ethics in Performance - 2011/12 series

Brain Injury & Decision Making

a close up of 2 holding handsBrain Injury & Decision Making

8 February 2012

6.00 pm

Chowen Lecture Theatre, BSMS Teaching Building

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The Ethics Team launched the Spring Ethics in Performance series with a moving and important lecture by Prof Jenny Kitzinger & Prof Celia Kitzinger who talked about their own family experience of decision-making on behalf of their sister, Polly, who suffered catastrophic brain injuries in a car crash in early 2009.

Severe brain injury can lead to death, to a vegetative/ minimally conscious state, or to survival with severe neurological deficits and dependence on 24/7 care. Very occasionally, a person with severe brain injury makes a remarkable recovery to near-normal functioning. For any given patient, the initial prognosis is uncertain. Families are therefore faced with difficult challenges at different stages.

Celia and Jenny contextualized their own experience in relation to the 23 in-depth interviews conducted so far with other families of severely brain injured patients. They explored the issues raised by these personal stories, with a particular focus on the legal, ethical and personal context of decision-making (especially in light of the Mental Capacity Act 2005 and the recent landmark legal decision in 'M'). They invited discussion about what these stories teach us about what families, potential patients, medics and policy makers need to know, and how this might inform health care policy and practice.

A Postcard Exhibition was on display in the foyer. Celia and Jenny invited interviewees (and other family members of severely brain injured patients) to write postcards addressed to neurosurgeons, rehab teams, intensive care nurses, physiotherapists and others in response to their questions: "What message would you like to send to doctors, policy makers, other families etc? What would you like people to know about your experience?"

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Biographies

Jenny Kitzinger is Professor of Communication Research, School of Journalism, Media & Cultural Studies, Cardiff University and Director of the 'Risk, Science, Health and Media' Research Group. She is a member of the Royal College of Physicians' Working Party rewriting guidelines on the management of the 'vegetative' state.

Celia Kitzinger is a Chartered Psychologist and Professor in the Sociology Department at the University of York. She was recently a Visiting Scholar at Yale/Hastings Bioethics Center in New York, working on end-of-life decision-making, with special reference to advance directives.