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Law in everyday life and death: a socio-legal study of chronic disorders of consciousness

Published online by Cambridge University Press:  02 January 2018

Simon Halliday*
University of York
Celia Kitzinger*
University of York
Jenny Kitzinger*
Cardiff University
Law & Management Building, Law School, University of York, Freboys Lane, York YO10 5HD, UK. Email:
Department of Sociology, Wentworth College, University of York, Heslington, York YO10 5DD, UK. Email:
Cardiff School of Journalism, Media and Cultural Studies, Cardiff University, Bute Building, King Edward VII Avenue, Cardiff CF10 3NB, UK. Email:
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This paper addresses, from a socio-legal perspective, the question of the significance of law for the treatment, care and the end-of-life decision making for patients with chronic disorders of consciousness. We use the phrase ‘chronic disorders of consciousness’ as an umbrella term to refer to severely brain-injured patients in prolonged comas, vegetative or minimally conscious states. Based on an analysis of interviews with family members of patients with chronic disorders of consciousness, we explore the images of law that were drawn upon and invoked by these family members when negotiating the situation of their relatives, including, in some cases, the ending of their lives. By examining ‘legal consciousness’ in this way (an admittedly confusing term in the context of this study,) we offer a distinctly sociological contribution to the question of how law matters in this particular domain of social life.

Research Article
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Legal Studies published by John Wiley & Sons Ltd on behalf of the Society of Legal Scholars. This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited. (
© 2014 The Authors


* We are grateful to Kathy Cerminara, Sharon Cowan, Sarah Nettleton, Julie Latchem and Glenys Williams, all of whom read and commented on earlier drafts. This paper was part-funded by Research Priming Funds provided by the Wellcome Trust [ref: 097829/Z/11/A].

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15. Lack of mental capacity is defined in ss 2 and 3.

16. Currently, only 4% of the population of England and Wales reports having made an Advance Decision and only 4% reports having appointed anyone as their Health and Welfare Lasting Power of Attorney (YouGov 2013;, accessed 15 January 2014). In G v E [2010] EWCA 2512, J Baker elaborated the principle underpinning the statutory provisions regarding deputies: ‘the words of s16(4) are clear. They do not permit the court to appoint deputies simply because “it feels confident it can” but only when satisfied that the circumstances and the decisions which will fall to be taken will be more appropriately taken by a deputy or deputies rather than by a court, bearing in mind the principle that decisions by the courts are to be preferred to decisions by deputies’ (para 61).

17. Mental Capacity Act 2005, s 24.

18. Ibid, ss 9–11. Note, however, that, under s 11(8) an attorney can only refuse life-sustaining treatment if the grant of the power of attorney expressly provides for this.

19. Ibid, s 16.

20. Ibid, s 20.

21. Albeit wrongly, 48% of people believe that they have the legal right to make medical decisions on behalf of an adult family member who lacks capacity to make decisions for themselves; 22% did not know whether they had this legal right or not; only 22% answered correctly that they did not have this right (YouGov 2013;, accessed 15 January 2014).

22. Mental Capacity Act 2005, s 4.

24. Airedale NHS Trust v Bland [1993] AC 789; W v M and Others [2011] EWHC 2443 (Fam).

25. Aintree University Hospitals NHS Foundation Trust v James [2013] UKSC 67, per Lady Hale, at para 22.

26. See above n 6.

27. Mental Capacity Act 2005, s 4.

28. The ‘best interests’ test is equally applicable, of course, to more routine clinical decisions not involving ‘serious medical treatment’.

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30. W v M and Others [2011] EWHC 2443 (Fam).

31. Further anonymising (including reassigning pseudonyms – and occasionally altering identifying details, e.g. gender of speakers/patient or the cause of the injury) became necessary at the point at which presentations and publications were prepared. The challenges of avoiding ‘jigsaw identification’ of participants across our publications and of maintaining the confidentiality of those whose stories may also be in the public domain following court hearings and media interest is discussed in B Saunders, C Kitzinger and J Kitzinger ‘Anonymising interviews for data sharing: the practical research ethics of protecting participant identities’ European Sociological Association Conference, Turin, Italy, 2013.

32. For more information about interviewees (and patients) represented by the sample, see ibid.

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43. Mental Capacity Act 2005, s 24.

44. Airedale NHS Trust v Bland [1993] AC 789; Court of Protection Practice Direction 9E, available at (accessed 15 January 2014).

45. See W v M and Others [2011] EWHC 2443 (Fam).

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48. Ewick and Silbey, above n 12.

49. Halliday and Morgan, above n 11.

50. Ewick and Silbey, above n 12.

51. Halliday and Morgan, above n 11.

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53. Halliday and Morgan's argument is the relationship between these four ‘ideal types’ of legality are structured by the combination of ‘grid’ and ‘group’ outlined by Douglas.

54. Ewick and Silbey, above n 12, p 76.

55. Ibid, p 84.

56. [2011] EWHC 2443 (Fam).

57. Ewick and Silbey, above n 12, pp 186–187.

58. Halliday and Morgan, above n 11.

59. Sarat, above n 10; Cowan, above n 10.

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