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Where are the carers in healthcare law and ethics?*

  • Jonathan Herring (a1)
Abstract

The work of carers is too often unvalued and unrecognised. This paper seeks to demonstrate some of the ways in which law and traditional medical ethics overlook the interests of carers and the importance of their work. It argues that this is, in part, due to the individualistic ethic that has come to dominate legal and ethical discourse about medicine. It recommends an approach based on an ethic of care that seeks to promote and protect just relationships of care, rather than an individualised model of rights.

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A version of this paper was given at a seminar arranged by the Royal Institute of Philosophy at the Centre for Professional Ethics, University of Keele. I am grateful to the participants for their comments and those of two anonymous referees and Sally Sheldon.

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1. Jackson, E Medical Law (Oxford: Oxford University Press, 2006) ch 4. For work on carers from sociological perspectives, see and

2. Henwood, M Ignored and Invisible (London: Carers’ National Association, 1998).

3. Not even, unfortunately, in Herring, J Medical Law and Ethics (Oxford: Oxford University Press, 2006).

4. Commission for Social Care Inspection The State of Social Care in England 2004–5 (London: Commission for Social Care Inspection, 2005).

5. Department of Health Caring About Carers (London: Department of Health, 2005) p 1.

6. Ibid, p 1. Ungerson, C Cash in care’ in Meyer, M Harrington Care Work: Gender Class and the Welfare State (London: Routledge, 2000) p 68 states that the government has paid only ‘lip service’ to promoting the interests of carers.

7. Immediately following this definition, the government gives the number of carers at 5.2 million; they cannot, therefore, have intended their definition to extend to parents.

8. See, for example, the definition of carers in Carers UK Facts About Carers (London: Carers UK, 2005) p 1. Indeed most legislation dealing with carers excludes paid carers:

9. Carers UK, above n 8, p 1.

10. Maher, J and Green, H Carers 2000 (London: Office for National Statistics, The Stationery Office, 2001).

11. Carers UK Without Us…? Calculating the Value of Carers’ Support (London: Carers UK, 2002).

12. Bywaters, P and Harris, A Supporting carers: is practice still sexist?’ (1998) 6 Health and Social Care in the Community 458.

13. Maher and Green, above n 10.

14. Hirst, M Carer distress: a prospective, population-based study’ (2005) 61 Social Science & Medicine 697.

15. Carers UK Carers UK Welcomes White Paper (London: Carers UK, 2006).

16. ‘Carers missing £750m benefits’ BBC Newsonline 2 December 2005.

17. Ibid.

18. Hirst, M Hearts and Minds: The Health Effects of Caring (London: Carers UK, 2004).

19. Ibid.

20. Keeley, B and Clarke, M Carers Speak Out Project (London: Princess Royal Trust for Carers, 2002). See also

21. Marriott, A et al Effectiveness of cognitive-behavioural family intervention in reducing the burden of care in carers of patients with Alzheimer’s disease’ (2000) 176 British Journal of Psychiatry 557.

22. ITV News Special Who Cares? broadcast 5 February 2006.

23. Walker, A Young Carers and their Families (London: HMSO, 1996);

24. Dearden and Becker, ibid.

25. The Princess Royal Trust for Carers Eight Hours a Day and Taken for Granted (London: PRTC, 1998);

26. Carers UK, above n 8.

27. Fox-Rushby, J Disability Adjusted Life Years (DALYs) for Decision-Making? (London: Office of Health Economics, 2002).

28. Harris, JIt’s not Nice to discriminate’ (2005) 31 Journal of Medical Ethics 373.

29. National Institute for Health and Clinical Excellence Appraisal Consultation Document: Donepezil, Rivastigmine, Galantamine and Memantine for the Treatment of Alzheimer’s Disease (London: NICE, 2005) para 4.3.5.

30. Harris, above n 28.

31. Donepezil, rivastigmine and gelantamine.

32. NICE Donepezil, Galantamine, Rivastigmine (Review) and Memantine for the Treatment of Alzheimer’s Disease (Appraisal Consultation) (London: NICE, 2006) para 4.3.10.2.

33. Ibid, para 4.3.10.3.

34. Hunt v Severs [1994] 2 All ER 385. A useful summary and discussion of the law is found in the Law Commission Damages for Personal Injury: Medical, Nursing and Other Expenses; Collateral Benefits (Report No 262, 1999).

35. Law Commission, ibid, para 3.47.

36. Degeling, S Restitutionary Rights to Share in Damages (Cambridge: Cambridge University Press, 2003).

37. B Braithwaite ‘The significance of family care for injured people’ [2005] Personal Injury Compensation 10.

38. Law Commission, above n 34, para 3.83.

39. Ibid, para 3.84.

40. I am grateful to an anonymous reviewer for this point.

41. Damages Act 1996, s 2.

42. Children Act 1989, s 31.

43. As amended by the National Assistance Act 1951.

44. [2003] EWHC 1909 (Admin), [2003] 2 FLR 1235.

45. Re F (Adult: Court’s Jurisdiction) [2000] 2 FLR 512.

46. Ibid, para [22].

47. Ibid, paras [63] and [64].

48. [2002] EWHC 2278 (Admin), [2003] 1 FLR 292.

49. Clements, L Carers – the sympathy and services stereotype’ (2004) 32 British Journal of Learning Difficulties 6 at 7.

50. Section 3.

51. Section 27.

52. [1997] 2 WLR 556.

53. I have discussed this case further in J Herring ‘The welfare principle and parent’s rights’ in Bainham, A, Sclater, S Day and Richards, M What is a Parent? (Oxford: Hart, 1999).

54. Mental Health Act 1983, s 29.

55. Mental Health (Hospital, Guardianship and Consent to Treatment) Regulations 1983, SI 1983/2156, reg 14.

56. Clause 12(5).

57. Department of Health Caring about Carers (London: Department of Health, 1999).

58. Carers have limited rights to take (unpaid) time off work to care for a dependant. This right is found in Employment Rights Act 1996, s 57A(1).

59. Carers (Equal Opportunities) Act 2004, s 1.

60. Department of Health Carers and Disabled Children Act 2000 and Carers (Equal Opportunities) Act 2004. Combined Policy Guidance (London: Department of Health, 2005) para 43.

61. Carers (Equal Opportunities) Act 2004, s 2.

62. Section 1.

63. Clements, above n 8, para 1.4.

64. R (on the application of Stephenson) v Stockton-on-Tees Borough Council [2005] EWCA Civ 960, [2005] 3 FCR 248.

65. Department of Health Carers and Disabled Children Act 2000. Practice Guidance (London: The Stationery Office, 2001).

66. Carers UK Policy Briefing: Carers Grant Guidance Year 7 (London: Carers UK, 2006).

67. Carers UK Missed Opportunities: The Impact of New Rights For Carers (London: Carers UK, 2005).

68. Nicholas, E An outcomes focus in carers assessment and reviews: value challenge’ (2003) 33 British Journal of Social Work 31.

69. Marriott, H The Selfish Pig’s Guide to Caring (Clifton-upon-Teme: Polperro, 2003) p 115.

70. Health and Social Services and Social Security Adjudications Act 1983, s 17.

71. Carers UK Caring on the Breadline (London: Carers UK, 2000).

72. Ibid.

73. Ibid.

74. I am grateful to Rachel Taylor for some helpful advice on this section.

75. Clements, above n 8, para 4.40.

76. Da Silva Mouta v Portugal [2001] 1 FCR 653.

77. In R (on the application of Hooper) v Secretary of State for Work and Pensions [2005] UKHL 29, [2005] 1 WLR 1618, Lord Hoffmann (at para [65]) suggested that to fall within Art 14 the characteristic had to be at least analogous to those mentioned in Art 14. See Fredman, S Discrimination Law (Oxford: Oxford University Press, 2002) p 79 for a powerful argument against requiring immutability for a ground of discrimination.

78. Ibid, p 82.

79. Although in R (on the application of Hooper) v Secretary of State for Work and Pensions [2005] UKHL 29, above n 77 and R (on the application of Carson) v Secretary of State for Work and Pensions [2005] UKHL 3337, [2005] 2 WLR 1369 the House of Lords has been strict in its interpretation of Art 14.

80. Rieme v Sweden (1992) 16 EHRR 155; Cyprus v Turkey (1976) 4 EHRR 282.

81. Znamenskaya v Russia [2005] 2 FCR 406: ‘it has also been the Convention organs’ traditional approach to accept that close relationships short of “family life” would generally fall within the scope of “private life” ’ (para [27]).

82. Pretty v UK (2002) 35 EHRR 1 para 61.

83. Mowbray, A The Development of Positive Obligations under the European Convention on Human Rights by the European Court of Human Rights (Oxford: Hart, 2003).

84. E v UK [2002] FCR 700.

85. Ibid.

86. Fineman, M The Autonomy Myth (New York: New Press, 2004).

87. Ibid, p xv.

88. Ibid, xvii.

89. Eichner, MDependency and the liberal polity: on Martha Fineman’s The Autonomy Myth ’ (2005) 93 California Law Review 1285.

90. Finch, J and Groves, D Community care and the family’ (1980) 9 Journal of Social Policy 287.

91. Ungerson, C Thinking about the production and consumption of long-term care in Britain: does gender still matter?’ (2000) 29 Journal of Social Policy 623.

92. Meyer, C Cruel choices: autonomy and critical care decision-making’ (2004) 18 Bioethics 104.

93. Gilligan, Eg C Moral orientation and moral development’ in Kittay, E and Meyers, D (eds) Women and Moral Theory (Totowa: Rowman and Littlefield, 1987);

94. Gilligan, C In a Different Voice: Psychological Theory and Women’s Development (Cambridge MA: Harvard University Press, 1984) p 73.

95. Re JS [2002] 3 FCR 433.

96. Fineman, above n 86, p xvii.

97. Williams, F The presence of feminism in the future of welfare’(2002) 31 Economy and Society 502.

98. West, R The right to care’ in Kittay, E and Feder, E (eds) The Subject of Care: Feminist Perspectives on Dependency (Lanham: Rowman and Littlefield, 2002) p 89.

99. Hubbard, A The myth of independence and the major life activity of caring 2004] 8 Journal of Gender, Race and Justice 327.

100. McClain, L. Care as a public value: linking responsibility, resources, and republicanism’ [2001] 76 Chicago-Kent Law Review 1673;

101. See Silbaugh, K Turning labor into love: housework and the law 1996] 91 Northwestern University Law Review 1.

102. Williams, J From difference to dominance to domesticity; care as work, gender as tradition’ [2001] 76 Chicago-Kent Law Review 1441.There would also need to be changes in the employment market to ensure that employed work was a realistic and attractive option for women:

103. Clement, G Care, Autonomy and Justice: Feminism and the Ethic of Care (New York: Westview, 1996) p 11.

104. Held, above n 94, p 1.

105. Ibid, p 15.

106. Ibid, p 17.

107. Fine, M and Glendinning, C Dependence, independence or inter-dependence? Revisiting the concepts of care and dependency’ (2005) 25 Ageing and Society 601 at 619.

108. Shakespeare, T Help (Birmingham: Venture, 2000) and

109. Gibson, D Aged Care: Old Policies, New Solutions (Melbourne: Cambridge University Press, 2005).

110. Ungerson, C Social politics and the commodification of care 1997] 4 Social Policy 362.

111. Jackson, above n 1, p 22.

112. Eg Held, above n 93; Koehn, D An Ethic of Care (London: Routledge, 1998).

113. Jackson, above n 1, p 22 suggests that ethics of care has nothing to say about social policy. This is simply untrue: see, eg, Hankivsky, O Social Policy and the Ethic of Care (Vancouver: University of British Columbia Press, 2005).

114. Gilligan, C In a Different Voice: Psychological Theory and Women’s Development (Cambridge MA: Harvard University Press, 1982) pp 1–4 and 24–63.

115. Hankivsky, above n 113, p 2.

116. Repeats of the experiments used by Carol Gilligan in European countries have not found the differing responses to ethical issues tied to sex in the way she did: Vikan, A, Camino, C and Biaggio, ANote on a cross-cultural test of Gilligan’s ethic of care’ (2005) 34 Journal of Moral Education 107.

117. West, R Caring for Justice (New York: New York University Press, 1997) p 81.

118. Jackson, above n 1, at 22.

119. The payment of carers has been said to carry dangers of causing the ‘marketisation of intimacy and the commodification of care’; Ungerson, CCash in care’ in Meyer, M Harrington (ed) Care Work: Gender Class and the Welfare State (London: Routledge, 2000) p 69.

120. Gillies, B Acting up: ambiguity and the legal recognition of carers’ (2000) 20 Ageing and Society 429.

121. For a development of this approach in relation to parents and children, see J Herring ‘The Human Rights Act and the welfare principle in family law – conflicting or complementary?’ [1999] CFLQ 223.

122. C Koggel ‘Care and justice; re-examined and revised’ [1999] Paideia 24 December.

123. Hughes, B et alLove labour’s lost?’ (2005) 39 Sociology 259.

124. For an excellent discussion on the importance of responsibilities in medical law and ethics, see Brazier, M Do no harm – do patients have responsibilities too? 2006 Cambridge Law Journal 397.

125. Commission for Social Care Inspection Leaving Hospital Revisited (London: Commission for Social Care Inspection, 2005).

126. Toronto, J Moral Boundaries (London: Routledge, 1993) p 113.

127. Bubeck, D Care, Gender and Justice (Oxford: Clarendon Press, 1995).

128. Read, J Will the Carers and Disabled Children Act 2000 make a difference to the lives of disabled children and their carers?’ (2002) 28 Child Care, Health and Development 273.

129. Clements, above n 49.

130. Department of Health More Older People to be given Choice to Live at Home (London: Department of Health, 2006).

131. The Audit Commission Older People: Independence and Wellbeing (London: The Audit Commission, 2004) para 94.

132. Nicholas, E An outcomes focus in carers assessment and review’ (2003) 33 British Journal of Social Work 31.

133. Marriott, above n 69, p 9.

134. Abrams, K The second coming of care’ (2001) 76 Chicago-Kent Law Review 1605;

135. Hubbard, above n 99; Ungerson, above n 110.

136. Department of Health, above n 57, para 69.

* A version of this paper was given at a seminar arranged by the Royal Institute of Philosophy at the Centre for Professional Ethics, University of Keele. I am grateful to the participants for their comments and those of two anonymous referees and Sally Sheldon.

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