University of Cambridge > > Developmental Psychiatry > Disability rights, 'disorders of consciousness' and the Mental Capacity Act: one family's experience

Disability rights, 'disorders of consciousness' and the Mental Capacity Act: one family's experience

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The advent of late 20th /early 21st century resuscitation techniques and evolving medical technologies is associated with a dramatic increase 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 irreversible cognitive and motor disabilities. Recent media coverage of these disabilities of consciousness displays implicit tensions. On the one hand, headlines celebrate fMRI scanning to detect brain activity in people previously assumed to be vegetative, and report aspirations to establish brain-computer interfaces which might help such individuals to communicate their wishes; and on the other hand, coverage is attracted by some high-profile ‘right-to-die’ and ‘mercy killing’ cases (e.g., Francis Inglis, convicted of the murder of her brain-damaged son). Recent legal changes – notably the implementation of the Mental Capacity Act (MCA) – stipulate that clinicians are supposed to place the disabled person at the centre of any decision-making about them and the MCA code of practice lays out guidelines for how such decisions should be made to take into account the 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 experience, of what happened to one individual, our sister Polly, caught at the cross-roads between life and death after a car accident, and subject to decisions made on her behalf. We examine how decisions actually played out at the bedside, against the background of sophisticated medical technologies, entrenched professional routines, family representations on her behalf and their intersection with the MCA legal requirements and guidelines. In particular we explore the ethical, practical and legal challenges 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 debate about the way forward in this contentious arena.

This talk is part of the Developmental Psychiatry series.

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