Abstract
The ‘rationing’ of health and social care within the Kingdom (UK) is an accepted reality today. As such, a growing body of case law has developed giving clear guidance on the legal principles and rights that the UK Courts look to when questions of availability and access to health and social care are brought before them. The case of McDonald v UK however highlights how limited the approach to justiciability on rationing issues is within the courts particularly when the context of a growing elderly population and finite resources is considered. While the courts in the McDonald litigation were prepared to review the procedural aspects associated with the decision making on the care provided, they were reluctant to assess in substantive terms the impact of the decision on the individual. Although dignity was acknowledged as being relevant throughout the various stages of the litigation, there was limited discussion of the concept. This chapter questions whether fuller consideration could have been given to the concept of dignity as understood within the disciplines of health and law, including Article 12 of the International Covenant on Economic, Social and Cultural Rights (ICESCR). In spite of the relationship between health and dignity being clearly acknowledged within the international law on a right to health, there is limited guidance on what dignity means within the jurisprudence on Article 12 ICESCR. However, empirical research on both health and law has the potential to develop the concept as a standard in law. The concept has been increasingly referred to within professional guidance, empirical research and within a growing body of literature and case law. This represents a body of evidence which the courts could refer to in the context of access to health and social care litigation, and which they can in turn contribute to by embedding dignity as a value that ought to be considered in decision-making on access to social and health care entitlements.
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Notes
- 1.
The case of McDonald v United Kingdom 4241/12 (2014) 60 E.H.R.R. 1 is in itself evidence of this; See also Callahan (2012), pp. 12–13 who suggests that rationing within the NHS is no longer covert but overt. He highlights the use of tools such as Quality-Adjusted Life Years in decisions involving questions over ‘which types of treatment should be made available?’ as an example of this.
- 2.
Newdick (2004).
- 3.
McDonald v United Kingdom (2014), op cit. n 1.
- 4.
- 5.
McDonald v United Kingdom (2014), op cit. n 1; R (On the Application of McDonald) v Royal Borough of Chelsea and Kensington [2011] UKSC 33; R (On the Application of McDonald) v Royal Borough of Chelsea and Kensington (2010) EWCA 1109; R (On the Application of McDonald) v Royal Borough of Chelsea and Kensington (2009) EWHC 1582 (admin).
- 6.
Clough and Brazier (2014), p. 141.
- 7.
Foster (2011) highlights examples of primary research on health care (which focused on trying to understand the meaning of dignity and the factors which impact upon it) and reviews of case law looking at how the courts have approached ‘dignity.’
- 8.
Jacobson (2007), p. 292.
- 9.
- 10.
See for example Cairns et al. (2013).
- 11.
- 12.
See for example McCrudden ibid who reviews human rights treaty law and jurisprudence to question the understanding of dignity in the context of human rights law and O’Connell ibid who examines the concept in the context of equality law.
- 13.
The challenge at the Supreme Court R (McDonald) [2011] UKSC, para 5 gave rise to four issues for appeal. These included whether the care plan reviews were a re-assessment of needs, whether due regard was given to the nature of needs within the requirement of disability legislation, whether Article 8 ECHR had been infringed and whether that interference was lawful.
- 14.
The relevant statutory provisions which placed duties upon the Royal Borough of Chelsea and Kensington in respect of Ms McDonald’s care included: The National Health Service and Community Care Act (2009), S 47; National Assistance Act (1948) S 29(1); Chronically Sick and Disabled Persons Act (1947) S 2(1); Local Authority Social Services Act (1970) S 7(1).
- 15.
R (McDonald) [2011], opt cit. n 5, para 8.
- 16.
Ibid., para 1.
- 17.
Ibid., para 11 referring to the 2010 Care Plan Review for Ms McDonald.
- 18.
Ibid., para 12 citing Rix LJ in R (McDonald) (2010) EWCA, para 53.
- 19.
Ibid. per Brown LJ, para 9. Walker LJ, Kerr LJ and Dyson LJ all agreed with Brown LJ’s judgment and dismissed the appeal. Lade Hale provided the only dissenting judgment.
- 20.
McDonald V UK (2014), op cit. n 1, para 59. A violation was found to have occurred in the period between 21 November 2008 and November 2009. Within that time, care was not provided in line with the assessment made. No violation was found to have occurred after November 2009.
- 21.
Ibid.
- 22.
Ibid., para 48.
- 23.
Ibid., para 48.
- 24.
Ibid., para 53.
- 25.
Ibid., para 55.
- 26.
Clough and Brazier (2014), p. 141.
- 27.
Clements (2011), p. 684.
- 28.
Pritchard-Jones (2015), p. 111.
- 29.
O’Cinneide (2013), pp. 395–396.
- 30.
Ibid. One example of this is found in Eisai Limited v. The National Institute for Health and Clinical Excellence (NICE), The Alzheimer’s Society, Shire Pharmaceuticals Limited [2007] EWHC 1941 (Admin) QBD (Admin). One factor considered by the court in this case was the discriminatory effect of one aspect of the process of evaluation of the treatment.
- 31.
O’Cinneide (2013), p. 403 who further notes that ‘ethical aimlessness’ was a term first used by Anthony Lester in association with the common law before the ‘modern rule of law’ and human rights.
- 32.
Ibid., p. 403.
- 33.
McDonald [2011] UKSC, op cit. n 5, para 79 citing R v Gloucestershire County Council ex parte Barry [1997] AC 584 at 589F.
- 34.
CESCR General Comment No 14: The Right to Health (Article 12) (11 August 2000). E/C.12/2000/4, para 1.
- 35.
Ibid., paras 1 and 4.
- 36.
McDonald (2010) EWCA, op cit. n 5, para 2.
- 37.
Ibid., para 63.
- 38.
Ibid., para 70.
- 39.
Ibid., paras 24 and 26–27. The evidence appears anecdotal and not based upon any formal evaluation.
- 40.
Ibid., para 66.
- 41.
Mc Donald [2011] UKSC, op cit. n 5, para 19.
- 42.
Ibid., para 75 Lady Hales states ‘Such Department of Health Guidance as there is, points the other way.’ Although Lady Hale does not identify the specific guidance, see para 31 where Lord Walker identifies a statement in the Department of Health Document (2000) in support of the proposition that incontinence sheets could be provided: ‘incontinence sheets should not be offered prematurely.’
- 43.
See for example Centre for Health Service Studies University of Kent & Royal College of Physicians (2009) Privacy and Dignity in Continence Care Project (2009) (available at https://kar.kent.ac.uk/24800/1/Phase_1_Privacy_and_Dignity_in_Continence_Care_Report_November_2009.pdf accessed 20/5/2015).
- 44.
Samanta and Samanta (2003).
- 45.
McDonald v UK [2014], op cit. n 1, para 47, citing Pretty v United Kingdom 2346/02 (2002) 35 EHRR 1.
- 46.
Ibid., para 56.
- 47.
Ibid., para 78 “The Care Quality Commission’s Guidance, Essential Standards of Quality and Safety” (2010), p. 117 requires that people who use services have access to toilets, baths and showers which will enable them to maintain privacy and dignity, in close proximity to their living areas. The Commission’s recent Review of Compliance at Ipswich Hospital NHS Trust found that dignity was not always sufficiently considered because people were not taken to a toilet away from their bed-space and commodes were used all the time”, p. 8.
- 48.
Foster (2011), p. 4.
- 49.
Ibid., Chapters 5–7.
- 50.
See Jacobson (2007), pp. 297–299.
- 51.
Foster (2011), p. 3.
- 52.
Ibid., p. 15.
- 53.
Pleschburger (2007).
- 54.
- 55.
Band-Winterstein (2015), pp. 1–15.
- 56.
Department of Health (2014), para 5.20.
- 57.
Newdick (2014).
- 58.
McDonald v UK (2014), op cit. n 1, paras 30–34. The relevant international law referred to was the UN Convention on The Rights of Persons with Disabilities and the European Union Charter of Fundamental Rights.
- 59.
See General Comment 14, op cit. n 34 (which will be discussed further in this essay, in the context of the International Right to Health.) Although a referral was offered in relation to incontinence care, this was refused as she was in fact continent.
- 60.
Oosterveld-Vlug et al. (2014).
- 61.
- 62.
Ibid.
- 63.
Ibid.
- 64.
- 65.
Ibid., p. 26.
- 66.
Ibid. See also Pleschburger (2007).
- 67.
Foster (2011); chapter 1 provides hypothetical examples to highlight this point.
- 68.
Oosterveld-Vlug et al. (2014), p. 26.
- 69.
See for example Airedale N.H.S. Trust v Bland [1993] A.C. 789; Pretty v. United Kingdom (2002) 2346/02 (2002) 35 EHRR 1.
- 70.
See for example Tyrer v United Kingdom [1978] ECHR 2; Pretty v. United Kingdom (2002) ibid.
- 71.
- 72.
See McCrudden (2008) on the approach to dignity within Human Rights law.
- 73.
Pretty v. United Kingdom, op cit. n 69.
- 74.
McCrudden (2008), p. 723.
- 75.
Ibid., p. 679.
- 76.
Ibid., pp. 680–681.
- 77.
Ibid., p. 683 (citing Pretty v. United Kingdom, op cit. n 69).
- 78.
R (On the Application of Burke) v General Medical Council [2005] QB 424.
- 79.
Ibid., para 57.
- 80.
Foster (2011), p. 101.
- 81.
Ibid., p. 110. He goes on to say that autonomy is a manifestation of dignity.
- 82.
Ibid.
- 83.
HL v UK 45508/99 (2004) ECHR 471.
- 84.
Burke v General Medical Council [2005], op cit. n 78, para 71, citing, para 72, Baroness Hale (2004), p. 22.
- 85.
Fabre (2000), p. 2.
- 86.
- 87.
In particular see the Centre for Health Service Studies University of Kent & Royal College of Physicians (2009).
- 88.
[1957] 1 WLR 583; See also Samanta and Samanta (2003) on the impact of Bolitho v City and Hackney Health Authority [1998] AC 232 on Bolam.
- 89.
Foster (2011), p. 7.
- 90.
CESCR General Comment 14 (2000), para 12 (d).
- 91.
- 92.
- 93.
- 94.
Rodriquez-Pinzon and Martin (2003).
- 95.
United Kingdom’s 5th Periodic Report on Implementation of the International United Nations Covenant on Economic, Social and Cultural Rights (31 January 2008) E/C.12/GBR/5, paras 51 and 74.
- 96.
Ibid., paras 296–325.
- 97.
Department of Health NHS Constitution for England (2013) (available at https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/170656/NHS_Constitution.pdf accessed 19/5/2015). Although the phrase ‘right to health’ is not specifically used within the Constitution, many of the rights associated with it are identifiable, e.g. non-discrimination; See also Department of Health, Social Services and Public Safety for Northern Ireland (June 2014) Making Life Better: A Whole System Strategic Framework for Public Health 2013–2023 (available at http://www.dhsspsni.gov.uk/mlb-strategic-framework-2013-2023.pdf accessed 18/5/2015), p. 8 in which the ‘right to the highest attainable standard of health’ is acknowledged as an underpinning value.
- 98.
General Comment 14 (2000), op cit. n 34.
- 99.
Ibid., para 1 The definition in Article 12(1) is developed with reference to dignity.
- 100.
Ibid., paras 8 and 9.
- 101.
Ibid., para 31.
- 102.
Ibid., paras 34–37; See also United Nations Commission on Human Rights, Report of the Special Rapporteur on the Right of Everyone to the Enjoyment of the Highest Attainable Standard of Physical and Mental Health, Paul Hunt (11 February 2005) E/CN.4/2005/51 who discusses these frameworks, paras 46–50.
- 103.
See Sepulveda (2003) for an overview of the development of the recognition of these obligations.
- 104.
Hunt (2005), para 46.
- 105.
General Comment 14 (2000), paras 1, 3 and 25. A further reference is made in footnote 13 of the General Comment to ‘healthy, natural and workplace environments’.
- 106.
Ibid., para 1.
- 107.
Ibid., para 3.
- 108.
Ibid., para 25.
- 109.
Ibid. See also CESCR (1993) General Day of Discussion on the Rights of the Ageing and Elderly with Respect to Rights recognized in the Covenant, 20 December 1993, E/C.12/1993/SR.12. The concept of dignity was mentioned in the context of independence and involvement with the community.
- 110.
United Nations Principles for Older Persons, 16 December 1991, General Assembly resolution 46/91.
- 111.
Ibid. Article 17 as cited in CESCR General Comment No 6: The Economic, Social and Cultural Rights of Older Persons (8 December 1995). Contained in E/1996/22, para 5.
- 112.
Ibid., para 1.
- 113.
General comment 14 (2000).
- 114.
Ibid.
- 115.
Ibid., para 25.
- 116.
In a review of the 2014 Concluding Observations of the CESCR there are only two references to the concept of dignity. See CESCR Concluding Observations regarding El Salvador (19 June 2014). E/C.12/SLV/CO/3-5, para 22, CESCR; CESCR Concluding Observations regarding China, including Hong Kong, China and Macao (13 June 2014) E/c.12/CHN/CO/2, para 30. The issue of forced evictions in the context of city renewal sees the state urged to ensure ‘…free, prior and informed consent and with full respect for their safety and dignity.’ A thematic search of the Bayefsky.com site also highlights limited references to the concept, with only 6 references made to the concept up until 2001 and 3 references between 2001 and 2005.
- 117.
Ibid. Concluding Observations regarding El Salvador, para 22 “The Committee urges the State party to revise its legislation on the total prohibition of abortion to make it compatible with other fundamental rights such as the woman’s right to health and life, and consistent with the dignity of women.”
- 118.
CESCR Concluding Observations regarding Germany (24 September 2001) E/C.12/1/Add/68, paras 24 and 42. The observations refer to a grave concern about ‘inhumane conditions’ in nursing homes for older people.
- 119.
Economic and Social Council Summary Record of the 49 th Meeting Regarding Germany (30 August 2001). E/C.12/2001/SR.49, para 67 (a statement by Mr Willers, a representative of the State).
- 120.
Ibid.
- 121.
Ibid., para 68 (a statement by Ms Kuck-Schneelmelcher, a representative of the State). Despite this the issue was raised again in the CESCR Concluding Observations regarding Germany (12 July 2011) E/C.12/DEU/CO/5, para 27 where the Committee on ESCR observed that the state had not taken sufficient measures to deal with the difficulties in state nursing homes.
- 122.
Grover (2011).
- 123.
Ibid., para 10.
- 124.
Ibid., para 11.
- 125.
Ibid., paras 21, 54, 59–60.
- 126.
Ibid., para 61.
- 127.
Ibid., para 21.
- 128.
Ibid., paras 49 and 61 where dignity and autonomy are also associated together.
- 129.
Ibid., para 49.
- 130.
Grover (2011), para 60.
- 131.
NIHRC (2015), p. 92.
- 132.
Ibid., p. 17. ‘Dignity’ was referred to 107 times. The inquiry found no systemic evidence of violations.
- 133.
Ibid., p. 21.
- 134.
General Day of Discussion on the Rights of the Ageing and Elderly (1993), op cit. n 110, para 29.
- 135.
O’Cinneide (2013), p. 403. In the context of the discussion on accountability, the ‘normative steer’ is being suggested in relation to social justice.
- 136.
Ibid., p. 408. In particular O’Cinneide (2013) suggests that judicial review should only be available where a ‘sufficiently grave situation’ arises and that social justice is an important aspect of legal accountability.
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Miller, J. (2016). Dignity: A Relevant Normative Value in ‘Access to Health and Social Care’ Litigation in the United Kingdom?. In: Diver, A., Miller, J. (eds) Justiciability of Human Rights Law in Domestic Jurisdictions. Springer, Cham. https://doi.org/10.1007/978-3-319-24016-9_4
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