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

  • Simon Halliday (a1), Celia Kitzinger (a1) and Jenny Kitzinger (a2)

Abstract

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.

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Copyright

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. (http://creativecommons.org/licenses/by/3.0/).

Corresponding author

Law & Management Building, Law School, University of York, Freboys Lane, York YO10 5HD, UK. Email: simon.halliday@york.ac.uk.
Department of Sociology, Wentworth College, University of York, Heslington, York YO10 5DD, UK. Email: celia.kitzinger@york.ac.uk.
Cardiff School of Journalism, Media and Cultural Studies, Cardiff University, Bute Building, King Edward VII Avenue, Cardiff CF10 3NB, UK. Email: kitzingerj@cardiff.ac.uk

References

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* 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].

1. Jennett, B and Plum, FPersistent vegetative state after brain damage: a syndrome in search of a name’ (1972) 1 The Lancet (7753) 734.

2. Giacino, JT et al ‘The minimally conscious state: definition and diagnostic criteria’ (2002) 58 Neurology 349.

3. MacCormick, DNFour quadrants of jurisprudence’ in Kravitz, W, von Wright, GH and MacCormick, DN (eds) Prescriptive Formality and Normative Rationality in Modern Legal Systems: Essays in Honour of R.S. Summers (Berlin: Duncker and Humbolt, 1994); McCrudden, CLegal research and the social sciences’ (2006) 122 Law Q Rev 632; Halliday, S (ed) An Introduction to the Study of Law (Edinburgh: W Greens, 2012).

4. See eg Donnelly, MBest interests, patient participation and the Mental Capacity Act 2005’ (2009) 17 Med L Rev 1; Donnelly, MDetermining best interests under the Mental Capacity Act 2005’ (2011) 19 Med L Rev 304.

5. See eg Grubbe, APersistent vegetative state: the duty (not) to treat and conscientious objection’ (1997) 4 Eur J Health L 157; Lewis, PWithdrawal of treatment from a patient in a permanent vegetative state: judicial involvement and innovative “treatment” ’ (2007) 15 Med L Rev 392; Davies, M et al ‘Withdrawing and withholding artificial nutrition and hydration from a patient in a minimally conscious state (Re M)’ (2012) 38 J Med Ethics 64.

6. Pradella, GSubstituting a judgment of best interests: dignity and the application of objective principles to Pvs cases in the Uk’ (2005) 12 Eur J Health L 335; Rode, SEnd-of-life decisionmaking for patients in persistent vegetative states: a comparative analysis’ (2007) 30 Hastings Int'l & Comp L Rev 477; Jox, R et al ‘Substitute decision making in medicine: comparative analysis of the ethico-legal discourse in England and Germany’ (2008) 11 Medical Health Care & Phil 153. See also Mendelson, D and Stoltzfus, TA comparative study of the law of palliative care and end-of-life treatment’ (2003) 31 J L Med & Ethics 130.

7. See eg Finnis, J Bland: crossing the Rubicon?’ (1993) 109 Law Q Rev 329; Keown, JRestoring moral and intellectual shape to the law after Bland ’ (1997) 113 Law Q Rev 481; McGee, AFinding a way through the ethical and legal maze: withdrawal of medical treatment and euthanasia’ (2005) 13 Med L Rev 357; Keown, JA futile defence of Bland; a reply to Andrew McGee’ (2005) 13 Med L Rev 393; Ford, MThe personhood paradox and the right to die’ (2005) 13 Med L Rev 80; Dunn, MC et al ‘Constructing and reconstructing best interests: an interpretative examination of substitute decision-making under the Mental Capacity Act 2005’ (2007) 29 J Soc Welfare & Fam L 117; Coggon, JIgnoring the moral and intellectual shape of the law after Bland: the unintended side-effect of a sorry compromise’ (2007) 27 Legal Stud 110; Skene, L et al ‘Neuroimaging and the withdrawal of life-sustaining treatment from patients in vegetative state’ (2009) 17 Med L Rev 245.

8. Grubbe, A et al ‘Survey of British clinicians' views on management of patients in persistent vegetative state’ (1996) 248 The Lancet 35; Dierickx, K et al ‘Belgian doctors' attitudes on the management of patients in persistent vegetative state: ethical and regulatory aspects’ (1998) 140 Acta Neurochir 481.

9. See eg Hertogh, MA “European” conception of legal consciousness: rediscovering Eugen Ehrlich’ (2004) 31 J Legal Stud 455; Silbey, SAfter legal consciousness’ (2005) 1 Ann Rev L & Soc Sci 323; Kurkchiyan, MPerceptions of law and social order: a cross-national comparison of collective legal consciousness’ (2011) 29 Wis Int'l L J 102.

10. Merry, SE Getting Justice and Getting Even: Legal Consciousness among Working-Class Americans (Chicago: The University of Chicago Press, 1990); Sarat, A“… the law is all over:” power, resistance, and the legal consciousness of the welfare poor’ (1990) 2 Yale J L & Humans 343; Engel, DHow does law matter in the constitution of legal consciousness?’ in Garth, B and Sarat, A (eds) How Does Law Matter? (Evanston, IL: Northwestern University Press, 1998); Mezey, NOut of the ordinary: law, power, culture and the commonplace’ (2001) 26 Law & Soc Inquiry 145; Cowan, DLegal consciousness: some observations’ (2004) 67 Mod L Rev 928.

11. Halliday, S and Morgan, BI fought the law and the law won? Legal consciousness and the critical imagination’ (2013) 66 Current Legal Probs 1.

12. Ewick, P and Silbey, S The Common Place of Law: Stories from Everyday Life (Chicago: The University of Chicago Press, 1998).

13. Sarat, A and Kearns, T (eds) Law in Everyday Life (Ann Arbor, MI: University of Michigan Press, 1995).

14. See generally Jones, MA Medical Negligence (London: Sweet & Maxwell, 2008).

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; http://www.compassionindying.org.uk/knowledge-end-life-rights-and-choices-yougov-poll2013, 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; http://www.compassionindying.org.uk/knowledge-end-life-rights-and-choices-yougov-poll2013, 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’.

29. For critical reflections on the W v M decision, see Mullock, ADeciding the fate of a minimally conscious patient: an unsatisfactory balancing act?’ (2012) 20 Med L Rev 460; Jackson, EThe minimally conscious state and treatment withdrawal: W v M ’ (2013) 39 J Med Ethics 17.

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.

33. Bourdieu, PThe forms of capital’ in Richardson, J (ed) The Handbook of Theory and Research for the Sociology of Education (New York: Greenwood Press, 1986).

34. Sarat, A and Kearns, TBeyond the great divide: forms of legal scholarship and everyday life’ in Sarat and Kearns, above n 13; Levine, K and Mellema, VStrategizing the street: how law matters in the lives of women in the street-level drug economy’ (2001) Law & Soc Inquiry 169.

35. See Ewick and Silbey, above n 12.

36. Giddens, A The Consequences of Modernity (Cambridge: Polity Press, 1990).

37. For survey data about levels of trust in the medical profession, see Calnan, MW and Sanford, EPublic trust in health care: the system or the doctor?’ (2004) 13 Qual Saf Health Care 92; Tarrant, C et al ‘Factors associated with patients' trust in their general practitioner: a cross-sectional survey’ (2003) 53 Br J Gen Prac 798. For a discussion of trust in the context of euthanasia, see Jackson, EDeath, euthanasia and the medical profession’ in Brooks-Gordon, B et al Death Rights and Rights (Oxford: Hart Publishing, 1997).

38. Sztompka, P Trust: A Sociological Theory (Cambridge, UK: Cambridge University Press, 1999) p 13.

39. The fact, for example, that death for a permanently vegetative patient may only be possible/allowed via the withdrawal of artificial nutrition and hydration is one potential source of tension between family members and care providers.

40. In this way, our interviewees' individual assertions of expertise match similar communal assertions arising from organised political/social movements. See eg Epstein, S Impure Science: AIDS, Activism and the Politics of Knowledge (Berkeley, CA: University of California Press, 1996).

41. Sztompka, above n 38; see also Luhmann, NFamiliarity, confidence, trust: problems and alternatives’ in Gambetta, D (ed) Trust: Making and Breaking of Co-operative Relations (Oxford: Blackwell, 1988).

42. For further discussion, see Saunders et al, above n 31.

43. Mental Capacity Act 2005, s 24.

44. Airedale NHS Trust v Bland [1993] AC 789; Court of Protection Practice Direction 9E, available at http://webarchive.nationalarchives.gov.uk/20110218200720/http://www.hmcourts-service.gov.uk/cms/files/09E_-_Serious_Medical_Treatment_PD.pdf (accessed 15 January 2014).

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

46. A classic UK example would be Genn, H Paths to Justice: What People Do and Think about Going to Law (Oxford: Hart Publishing, 1999); Genn, H and Paterson, A Paths to Justice in Scotland: What People Do and Think about Going to Law (Oxford: Hart Publishing, 2000).

47. Interview with Ewick and Silbey in Halliday, S and Schmidt, P (eds) Conducting Law & Society Research: Reflections on Methods and Practices (New York: Cambridge University Press, 2009).

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.

52. See eg Douglas, MIntroduction to group-grid analysis’ in Douglas, M (ed) Essays in the Sociology of Perception (London: Routledge and Kegan Paul, 1982); Douglas, MCultural bias’ in Douglas, M (ed) In the Active Voice (London: Routledge and Kegan Paul, 1982); Thompson, M, Ellis, R and Wildavsky, A Cultural Theory (Boulder, CO: Westview Press, 1990).

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.

60. Hoffman, ELegal consciousness and dispute resolution: different disputing behavior at two similar taxicab companies’ (2003) 26 Law & Soc Inquiry 691.

61. Harding, R Regulating Sexuality: Legal Consciousness in Lesbian and Gay Lives (London: Routledge, 2011).

62. Boittin, MNew perspectives from the oldest profession: abuse and the legal consciousness of sex workers in China’ (2013) 47 Law & Soc'y Rev 245.

63. Halliday and Morgan, above n 11.

64. Bumiller, K The Civil Rights Society: The Social Construction of Victims (Baltimore, MD: Johns Hopkins University Press, 1988); Sarat and Kearns, above n 13; Ewick and Silbey, above n 12; Nielsen, LBSituating legal consciousness: experiences and attitudes of ordinary citizens about law and street harassment’ (2000) 34 Law & Soc Rev 1055; Engel, D and Munger, F Rights of Inclusion: Law and Identity in the Life Stories of Americans with Disabilities (Chicago, IL: The University of Chicago Press, 2003).

65. Silbey, above n 9.

66. For an overview, see Rubin, EPassing through the door: social movement literature and legal scholarship’ (2001) 150 U Pa L Rev 1.

67. See eg Epstein, S Impure Science: AIDS, Activism and the Politics of Knowledge (Berkeley, CA: University of California Press, 1996).

68. Halliday and Morgan, above n 11.

69. A particularly stark example of the subversion of law by an ‘underground’ of medical professionals can be found in Magnusson, R Angels of Death: Exploring the Euthanasia Underground (New Haven, CT: Yale University Press, 2002).

70. Halliday, SThe governance of compliance with public law’ (2013) Pub L 312324.

71. See Epp, C Making Rights Real: Activists, Bureaucrats and the Creation of the Legalistic State (Chicago, IL: The University of Chicago Press, 2009).

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