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SUMMARY:Disability rights\, 'disorders of consciousness' and the Mental Ca
 pacity Act: one family's experience - Professor Celia Kitzinger\, Departme
 nt of Sociology\, University of York\, and Professor Jenny Kitzinger\, Car
 diff School of Journalism\, Media and Cultural Studies\, Cardiff Universit
 y
DTSTART:20110601T113000Z
DTEND:20110601T123000Z
UID:TALK27642@talks.cam.ac.uk
CONTACT:Helen Verrechia
DESCRIPTION:The advent  of late 20th /early 21st century resuscitation tec
 hniques and evolving medical technologies is associated with a dramatic in
 crease in people surviving with profound brain damage in ‘vegetative’ 
 or ‘minimally conscious’ states (‘disorders of consciousness’).   
 Medical progress has thus produced new forms of severe and usually irrever
 sible cognitive and motor disabilities.   Recent media coverage of these d
 isabilities of consciousness displays implicit tensions. On the one hand\,
  headlines celebrate fMRI scanning to detect brain activity in people prev
 iously assumed to be vegetative\, and report aspirations to establish brai
 n-computer interfaces which might help such individuals to communicate the
 ir wishes\; and on the other hand\, coverage is attracted by some high-pro
 file ‘right-to-die’ and ‘mercy killing’ cases (e.g.\, Francis Ingl
 is\, convicted of the murder of her brain-damaged son).   Recent legal cha
 nges - notably the implementation of the Mental Capacity Act (MCA) - stipu
 late that clinicians are  supposed to place the disabled person at the cen
 tre of any decision-making about them and the MCA code of practice lays ou
 t guidelines for how such decisions should be made to take into account th
 e person’s wishes\, values and beliefs.  In the context of these recent 
 changes and debates\, we present a case study\, based on our own family ex
 perience\, of what happened to one individual\, our sister Polly\, caught 
 at the cross-roads between life and death after a car accident\, and subje
 ct to decisions made on her behalf. We examine how decisions actually play
 ed out at the bedside\, against the background of sophisticated medical te
 chnologies\, entrenched professional routines\, family representations on 
 her behalf and their intersection with the MCA legal requirements and guid
 elines.  In particular we explore the ethical\, practical and legal challe
 nges we have faced in trying to ensure that Polly’s own prior expressed 
 wishes might be taken into account.  We conclude by asking how disability 
 rights intersects with patient-centred care\, end-of-life decision making 
 and ‘right to die’ debates and hope to contribute to contemporary deba
 te about the way forward in this contentious arena. \n\n\n
LOCATION:Large Meeting Room\, Douglas House\, 18B Trumpington Road\, Cambr
 idge
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