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AUTONOMY, LIBERTY, AND MEDICAL DECISION-MAKING

  • John Coggon (a1) and José Miola (a2)
Extract

A central tenet to much ethical argument within medical law is patient autonomy.1 Although we have seen a welcome move away from a system governed by largely unchecked paternalism, there is not universal agreement on the direction in which medical law should advance.2 Competing concerns for greater welfare and individual freedom, complicated by an overarching commitment to value-pluralism, make this a tricky area of policy-development.3 Furthermore, there are distinct understandings of, and justifications for, different conceptions of autonomy.4 In this paper, we argue that in response to these issues, there has been a failure by the courts properly to distinguish political concepts of liberty and moral concepts of autonomy.

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1 K. Veitch, The Jurisdiction of Medical Law (Aldershot, 2007).

2 M. Brazier, “Do No Harm – Do Patients Have Responsibilities Too?” [2006] C.L.J. 397.

3 Dunn, M. and Foster, C., “Autonomy and Welfare as Amici Curiae” (2010) 18 Medical Law Review 86.

4 G. Dworkin, The Theory and Practice of Autonomy (Cambridge 1988).

5 Re T (Adult: Refusal of Treatment) [1993] Fam. 95; In Re MB (Medical treatment) [1997] 2 F.L.R. 426; Ms B v. An NHS Hospital Trust [2002] 2 All E.R. 449; Mental Capacity Act 2005, section 1(4).

6 Decisions made on behalf of incapacitated patients by third parties still must reflect the patients' particular system of values, beliefs, wishes, and feelings, and account for factors that would bear on the patients' own decisions were they able to make them: Mental Capacity Act 2005, section 4(6).

7 Key texts include: O. O'Neill, Autonomy and Trust in Bioethics (Cambridge 2002); C. MacKenzie, N Stoljar (eds.), Relational Autonomy: Feminist Perspectives on Autonomy, Agency, and the Social Self (Oxford 2000); J. B. Schneewind, The Invention of Autonomy: A History of Modern Moral Philosophy (Cambridge 1997); Dworkin, note 4 above; R. Lindley, Autonomy, (Basingstoke 1986); J. Raz, The Morality of Freedom, (Oxford 1986); Frankfurt, H. G., “Freedom of the Will and the Concept of the Person” (1971) 68 Journal of Philosophy 5.

8 M. Brazier, “Do No Harm”, note 2 above: much of Brazier's concern is directed at what we label “liberty” rather than “autonomy”.

9 Coggon, J., “Varied and Principled Understandings of Autonomy in English Law: Justifiable Inconsistency or Blinkered Moralism?” (2007) 15 Health Care Analysis 235.

10 Woolf, Lord, “Are the Courts Excessively Deferential to the Medical Profession?” (2001) 9 Medical Law Review 1.

11 Miola, J., “Autonomy Rued OK?” (2006) 14 Medical Law Review 108; Devaney, S., “Autonomy Rules OK” (2005) 13 Medical Law Review 102; Maclean, A., “The Doctrine of Informed Consent: Does it Exist and Has it Crossed the Atlantic?” (2004) 24 Legal Studies 386.

12 Harris, J. and Keywood, K., “Ignorance, Information and Autonomy” (2001) 22 Theoretical Medicine and Bioethics 415; M. Häyry and Takala, T., “Genetic Information, Rights, and Autonomy” (2001) 22 Theoretical Medicine and Bioethics 403.

13 Gurnham, D., “Losing the Wood for the Trees: Burke and the Court of Appeal” [2006] 14 Medical Law Review 253.

14 B. Jennings, “Autonomy” in B Steinbock (ed.) The Oxford Handbook of Bioethics (Oxford 2007).

15 J. Griffin, On Human Rights (Oxford 2008).

16 This distinction can be traced back to Berlin's celebrated distinction between the concepts he labelled positive and negative liberty: I. Berlin, “Two Concepts of Liberty” in I. Berlin, Four Essays on Liberty (Oxford 1969).

17 Griffin, On Human Rights, note 15 above, pp. 166–7.

18 I. Kant, Groundwork of the Metaphysics of Morals, edited by M. Gregor, (Cambridge 1998).

19 J. S. Mill, On Liberty, edited by E. Alexander, (London 1999).

20 Ibid. at p. 43.

21 The distinction drawn here is simplified but is useful for illustrative purposes. We accept that a theory of legitimate liberty can entail a concern with rationality in order to assess who should be afforded liberty, and to assess whether the liberty is warranted in respect of any given action: consider Raz, The Morality of Freedom, note 7 above. As we argue below, it is proper that the law concern itself with both liberty and autonomy but, at this stage, we are drawing out the differences between the concepts.

22 K. Veitch, The Jurisdiction of Medical Law (Aldershot 2007).

23 R. Geuss, Philosophy and Real Politics (Princeton 2008), p. 1.

24 J. Gray, Two Faces of Liberalism (Cambridge 2000), p. 1.

25 J. Rawls, A Theory of Justice – Revised Edition (Oxford 1999).

26 I Berlin, “Political Ideas in the Twentieth Century,” in Isaiah Berlin, Four Essays on Liberty (Oxford 1969); See also Powers, M, “Bioethics as Politics: The Limits of Moral Expertise” (2005) 15 Kennedy Institute of Ethics Journal 305.

27 Dunn, M. C., Clare, I., Holland, A., “To Empower or to Protect? Constructing the ‘Vulnerable Adult’ in English Law and Public Policy” (2008) 28 Legal Studies 234.

28 Coggon, note 9 above, especially pp. 246–251.

29 As suggested by an anonymous reviewer of this paper.

30 In Re T (Adult: Refusal of Treatment) (1993) Fam. 95 at 116–117.

31 Coggon, note 9 above.

32 Bielby has produced an excellent critique and analysis of this distinction: Bielby, P., “The Conflation of Competence and Capacity in English Medical Law: A Philosophical Critique” (2005) 8 Medicine, Health Care and Philosophy 357.

33 This claim holds across the most dominant approaches in medical ethics. From the “four principles approach”, see e.g. Gillon, R., “Ethics needs principles – four can encompass the rest – and respect for autonomy should be ‘first among equals’” (2003) 29 Journal of Medical Ethics, 307, 310; from a Kantian perspective, see e.g. O. O’Neill, note 7 above, pp. 83–4; from a libertarian perspective see e.g. J. Harris, The Value of Life (London 1985), p. 196.

34 Re T (Adult: Refusal of Treatment) [1993] Fam. 95; Mental Capacity Act 2005, sections 1(4).

35 This accords with the principled but ex ante “hollow” conceptions of autonomy found, e.g., in G. Dworkin, note 4 above; Frankfurt, note 7 above; Ronald Dworkin, Life's Dominion: an Argument about Abortion and Euthanasia (London 1993).

36 Re T. (Adult: Refusal of Treatment) [1993] Fam. 95.

37 Re E. (a minor) [1993] 1 F.L.R. 386.

38 X N.H.S. Trust v. T. (Adult Patient: Refusal of Medical Treatment) [2005] 1 All E.R. 387. Note we cite the three cases here for illustrative purposes, not with a view to endorsing or criticising the respective judicial decisions.

39 Cf Alper, J., “Genes, Free Will, and Criminal Responsibility,” (1998) 46 Social Science and Medicine 1599.

40 We are not here making substantive claims about determinism; rather, our claim is that law is designed and functions on the basis that free will exists and people live as if it exists. We do not seek, or need, to engage with putative metaphysical proofs relating to freedom of the will for the purposes of this paper.

41 For a principled approach that seeks to optimise the decision-making power of people with diminished or contested autonomy, whilst also affording adequate protections for welfare, see A. Dimopoulos, Issues in Human Rights Protection of Intellectually Disabled Persons, (Farnham 2010).

42 Eloquently noted in Griffin, On Human Rights, note 15 above at 35.

43 We acknowledge that it can be argued that real respect for autonomy requires a commitment to philosophical anarchism: R. P. Wolff, In Defense of Anarchism (Berkeley 1998). We note here that we do not agree with Wolff's arguments, but to engage with questions on the possibility of in-principle legitimacy of the State is beyond the scope of this essay.

44 Mill, On Liberty, note 19 above.

45 Wellman, C., “Liberalism, Samaritanism, and Political Legitimacy” (1996) 25 Philosophy and Public Affairs 211.

46 P. Pettit, Republicanism – A Theory of Freedom and Government (Oxford 1997).

47 In practice there will be “hard cases”, such as that of Kerrie Wooltorton, that test this line drawing exercise; see McLean, S., “Live and let die” (2009) 339 British Medical Journal 4112.

48 Nor need it mean “anything goes”: Wolf, S., “Two Levels of Pluralism” (1992) 102 Ethics 785.

49 R (On the Application of Oliver Leslie Burke) v. The General Medical Council [2005] E.W.C.A. Civ 1003.

50 See the analysis, written prior to Burke, in Bielby, note 32 above.

51 Pretty v. U.K. (2002) 35 E.H.R.R. 1.

52 Chester v. Afshar [2004] 4 All E.R. 587.

53 Section 3(1) Mental Capacity Act 2005.

54 Chatterton v. Gerson [1981] 1 All E.R. 257.

55 Chester v. Afshar note 52 above. Also Devaney, note 11 above.

56 Sidaway v. Board of Governors of Bethlem Royal Hospital [1985] 1 All E.R. 643.

57 I. Kennedy, “Consent: The Capable Person” in C. Dyer, Doctors, Patients and the Law (Oxford 1992).

58 Miola, J., “On the Materiality of Risk: Paper Tigers and Panaceas” (2009) 17 Medical Law Review 76.

59 Sidaway, note 56 above at 649.

60 Ibid. at 659.

62 J. Miola, “On the Materiality of Risk: Paper Tigers and Panaceas”, note 58 above, at 80–85 and 95–99.

63 Blyth v. Bloomsbury [1993] 4 Med. L.R. 151; Gold v. Haringey Health Authority [1987] 2 All E.R. 888.

64 Smith v. Tunbridge Wells Health Authority [1994] 5 Med L.R. 334; Pearce v. United Bristol Healthcare N.H.S. Trust [1999] P.I.Q.R. 53; Wyatt v. Curtis [2003] EWCA Civ 1779; Chester v. Afshar, note 52 above.

65 S. Devaney, “Autonomy Rules OK”, note 11 above. The work cited is R. Dworkin, Life's Dominion: an Argument about Abortion and Euthanasia, (London 1993).

66 Chester, note 52 above, at p. 653, per Lord Steyn.

67 Maclean, A., “Autonomy, Consent and Persuasion” (2006) 13 European Journal of Health Law 321.

68 Smith, note 64 above at p. 337.

69 Chester, note 52 above at p. 604, quoting Michael Jones (Jones, M., “Informed Consent and Other Fairy Stories” (1999) 7 Medical Law Review 103 at 129), emphasis added.

70 E. Jackson, Medical Law: Text, Cases and Materials, 2nd edition, (Oxford 2009), 202–3; S. Pattinson, Medical Law and Ethics, 2nd edition, (London 2009), at 131. Also, Devaney note 11 above who, nevertheless, acknowledges that the decision does not constitute a panacea.

71 Sidaway, note 56 above at p. 649, per Lord Scarman, emphasis added.

72 Ibid. at p. 660.

73 Ibid. at p. 666.

74 Ibid. at p. 659.

75 In Chester it was seen to justify a departure from the usual rules of causation, with Lord Steyn declaring that “the right to autonomy and dignity can and ought to be vindicated” (Chester, note 52 above, at 693). In Smith, Morland J. held that information must be given in a form that “will be understood by the patient so that the patient can make an informed decision as to whether or not to consent to the recommended surgery or treatment” (Smith, note 64 above at p. 339). Similarly, in Pearce, Lord Woolf held that the purpose of the law was to ensure that patients were not “deprived of the opportunity to make a proper decision as to what course he or she should take in relation to treatment” (Pearce, note 64 above, at p. 59).

76 O'Neill, O., “Ethics for Communication?” (2009) 17 European Journal of Philosophy 167. Obiter comments on the importance of understanding have been made: Smith v. Tunbridge Wells, note 64 above. It is also a core component of the General Medical Council's (GMC) ethical guidance: GMC, Consent: Patients and Doctors Making Decisions Together (GMC, 2008), paras [7]–[11].

77 Al Hamwi v. Johnston and Another [2005] EWHC 206.

78 Ibid. at para [50].

79 Ibid. at para [74].

80 Ibid. at para [69]. Emphasis added.

81 Ibid. at para [54].

82 J. Miola, “Autonomy Rued OK?” note 11 above.

83 Ibid.

84 A. Maclean, note 67 above.

85 It should be noted however that the courts have, at times, taken a more enlightened approach, such as in Lybert v. Warrington Health Authority [1996] 7 Med L.R. 71, where the doctor was found negligent for providing critical information after the procedure had been performed. Nevertheless, that does not mitigate the decision in Al Hamwi, which not only covers a different point but also represents a list of factors approach that is consistent with allegedly autonomy enhancing case law.

86 GMC, Consent: Patients and Doctors Making Decisions Together, note 76 above.

87 A. Maclean, Autonomy, Informed Consent and Medical Law (Cambridge 2009), p. 221.

88 Birch v. University College London Hospital N.H.S. Foundation Trust [2008] EWHC 2237.

89 Section 1 Children Act 1989.

90 Section 1(5) Mental Capacity Act 2005.

91 Ibid. section 1(2).

92 Ibid. section 2(4).

93 Law Commission, Mental Incapacity (Law Com 231, 1995), para [3.5].

94 Ibid.

95 Chapter 3 of the Mental Capacity Act's Code of Practice clearly states that the doctor should not only impart the information to the patient, but communicate it in a way that the patient can understand: The Stationery Office, Mental Capacity Act 2005 – Code of Practice (London 2007).

96 Ibid. para [4.40].

97 Ibid. para [4.42].

98 Mental Capacity Act 2005, section 4(6).

99 Re C (Adult: Refusal of Medical Treatment) [1994] 1 All E.R. 819. It has been held that the two tests are essentially as one (see Local Authority X v. MM and KM [2007] EWHC 2003 at para [81]), although this proposition is debatable.

100 Coggon, “Varied and Principled Understandings of Autonomy in English Law”, note 9 above.

101 Cf G. Dworkin, The Theory and Practice of Autonomy, note 4 above; Frankfurt, “Freedom of the Will and the Concept of the Person” note 7 above.

102 See In re Z (Local Authority: Duty) [2005] 1 WLR 959, para 13, per Hedley J.

103 Ms B v An NHS Hospital Trust [2002] 2 All E.R. 449.

104 R (On the Application of Oliver Leslie Burke) v. The General Medical Council [2005] EWCA Civ 1003.

105 J. Gray, Isaiah Berlin (Princeton 1997).

106 Re T (Adult: Refusal of Treatment) [1993] Fam. 95.

107 The NHS Trust v. Ms T [2004] EWHC 1279 (Fam).

108 Mental Capacity Act 2005, section 1(4).

109 Flynn, M., Keywood, K., Fovargue, S., “Warning: Health ‘Choices’ Can Kill” (2003) 5 Journal of Adult Protection 30.

110 Whilst there may be dissenters from the view that patients' “empowerment” across the past 30 or so years is a good thing, and we can not demonstrate here that the previous, paternalistic regime was based on mistake, there is a wide-spanning and persuasive consensus that champions a system of greater patient autonomy over the previous, much more paternalistic system: canonically, see Ian Kennedy, Treat Me Right – Essays on Medical Law and Ethics (Oxford 1988).

111 See General Medical Council, Consent: patients and doctors making decisions together, London: GMC, 2008. We would likewise note the soundness in this regard of the Mental Capacity Act's Code of Practice, which similarly emphasises the importance of partnership in decision-making, effective communication, and respect for people's own values.

112 Maclean, note 67 above.

The authors would like to thank Sara Fovargue, Kirsty Keywood, Jean McHale, Suzanne Ost, and two anonymous reviewers for their comments on this paper. All errors remain our own. John Coggon gratefully acknowledges the support of the British Academy postdoctoral fellowship scheme and the Wellcome Strategic Programme in the Human Body, its Scope, Limits and Future. This paper arose out of a discussion between the authors at a conference at Lancaster University entitled “Exploring Health Care Law's Recognition of Autonomy and Rights”, on the 16th March 2009, and both authors express their thanks to the organisers for the stimulation provided by that meeting.

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