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Advance decision making – rhetoric or reality?

Published online by Cambridge University Press:  02 January 2018

Carolyn Johnston
Carolyn Johnston*
Affiliation:
Kingston University; King's College London
*
Dr Carolyn Johnston, Senior Lecturer in Law, Faculty of Business and Law, Kingston University, 47 Kenry House, Kingston Hill, Kingston upon Thames KT2 7LB, UK. Email: [email protected]; Adviser, Medical Law & Ethics, King's College London, School of Medicine, 4.18 Shepherd's House, Guy's Campus, London SE1 9RT, UK. Email: [email protected]
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Abstract

The Mental Capacity Act 2005 introduced a statutory framework for advance decisions, thus promoting autonomous healthcare decision making in advance of loss of capacity. In order to be valid and applicable, and so binding on healthcare professionals, advance decisions refusing treatment (ADRT) must specify treatments to be refused and the circumstances of refusal. Recent case-law indicates that a high level of specificity is required for advance refusals of life-sustaining treatment and, in contrast to a presumption of capacity for contemporaneous decisions, in some circumstances capacity must be demonstrated at the time of making the advance decision. In comparison with the ‘stringent’ requirements for ADRT, the more generic Advance Care Planning (ACP) is gaining more prominence in end of life decision making. The paper explores recent case-law and its impact on the effectiveness of ADRT in practice and compares with ACP.

Type
Research Article
Information
Legal Studies , Volume 34 , Issue 3 , September 2014 , pp. 497 - 514
Copyright
Copyright © Society of Legal Scholars 2014

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References

1. Johnston, C ‘Does the statutory regulation of advance decision-making provide adequate respect for patient autonomy?’ (2005) 26(2) Liverpool L Rev 189–203;CrossRefGoogle Scholar Michalowski, S ‘Advance refusals of life-sustaining medical treatment: the relativity of an absolute right’ (2005) 68(6) Mod L Rev 958–982;CrossRefGoogle Scholar Maclean, A ‘Advance directives and the rocky waters of anticipatory decision making’ (2008) 16(1) Med L Rev 1–22.CrossRefGoogle ScholarPubMed

2. Davison, S and Simpson, C ‘Hope and advance care planning in patients with end stage renal disease: qualitative interview study’ (2006) 333 BMJ 886.CrossRefGoogle ScholarPubMed

3. Information provided by the Office of the Public Guardian under the Freedom of Information Act 2000, by email dated 20 September 2011.

4. See http://www.compassionindying.org.uk/poll-2011 (accessed 2 April 2013).

5. NHS Advance Care Planning: A Guide for Health and Social Care Staff (London: Department of Health, 2007).

6. Coulter, A and Collins, A Making Shared Decision-Making a Reality – No Decision about Me, without Me (London: The King's Fund, 2011).Google Scholar

7. British Social Attitudes 30, Dying, 13 May 2013, available at http://www.dyingmatters.org/sites/default/files/BSA30_Full_Report.pdf (accessed 19 May 2013).

8. Buchanan, A and Brock, D Deciding for Others: The Ethics of Surrogate Decision Making (Cambridge: Cambridge University Press, 1989);Google Scholar Dresser, R ‘Pre-commitment: a misguided strategy for securing death with dignity’ (2002–2003) 81 Tex L Rev 1823.Google Scholar

9. [2011] EWHC 2443 (Fam).

10. [2012] EWHC 1639 (COP).

11. [2012] EWHC 1390 (Fam).

12. Bond, C and Lowton, K ‘Geriatricians' views of advance decisions and their use in clinical care in England: qualitative study’ (2011) 40 Age and Ageing 450–456.CrossRefGoogle ScholarPubMed

13. [1993] AC 789 at 828.

14. Re Mb (Medical Treatment) [1997] 2 FLR 426 per Butler-Sloss LJ, at 436.

15. Section 1 (2) Mental Capacity Act 2005.

16. Mental Capacity Act 2005 Code of Practice, para 9.8.

17. [2012] EWHC 1639 (COP)

18. [2012] EWHC 1639 (COP) per Peter Jackson J [64].

19. E was described as having a difficult to treat combination of problems, including personality disorder, dependence on drugs and alcohol as well as anorexia. She had been controlling her eating since the age of 11. Unknown to her parents, she had been seriously sexually abused from the age of 4 to 11.

20. Mental Capacity Act 2005 ss 2(1) and 3(1).

21. [2012] EWHC 1639 (COP) per Peter Jackson J [48] [49].

22. [2012] EWHC 1639 (COP) per Peter Jackson J [19].

23. E's BMI had been around 11–12 over the previous 2 years, which put her at an increased risk of sudden cardiac death. She increased her BMI in order to put herself in a position to make ADRT that would be accepted as valid.

24. Mental Capacity Act 2005 Code of Practice, para 9.20.

25. [2012] EWHC 1639 (COP) per Peter Jackson J [64].

26. [2002] EWHC 429 (Fam).

27. Ibid, per Butler-Sloss P [89].

28. Re T (Adult: Refusal of Treatment) [1993] Fam 95 at 113, per Donaldson MR. The Mental Capacity Act 2005 Code of Practice states that capacity must be based on a person's ability to make a specific decision at the time it needs to be made (para 4.4).

29. [2012] EWHC 1639 (COP) per Peter Jackson J [65].

30. Alzheimer's Society Factsheet 463, Advance Decisions, p 3; available at http://www.alzheimers.org.uk/site/scripts/document_pdf.php?documentID=143 (accessed 2 April 2013).

31. [2004] EWHC 1279 (Fam).

32. [2012] EWHC 1639 (COP).

33. Tan, J etal ‘Competence to make treatment decisions in anorexia nervosa: thinking processes and values’ (2006) 13(4) Philos Psychiatr Psychol 267–282 at 270.CrossRefGoogle ScholarPubMed

34. [2012] EWHC 1639 (COP) per Peter Jackson J [58].

35. BMA Advance Decisions and Proxy Decision-Making in Medical Treatment and Research (London: British Medical Association, 2007) p 3.

36. Mental Capacity Act 2005 Code of Practice, page 19.

37. [2012] EWHC 1639 (COP) per Peter Jackson J [100].

38. McLean, S ‘Live and let die’ (2009) 339 BMJ b4112. Kerri Wooltorton was said to have had an emotionally unstable personality disorder. She had apparently ingested antifreeze nine times in the previous year and each time had accepted life-saving treatment. She made an advance decision refusing treatment in such circumstances a few days before she ingested antifreeze again. In fact, Ms Wooltorton was considered to have capacity to refuse treatment and so there was no need for the validity of the advance decision to be considered.CrossRefGoogle ScholarPubMed

39. [2012] EWHC 1639 (COP).

40. Ibid, per Peter Jackson J [65].

41. Dhandra, A ‘Mental health and human rights’ (2007) 370(9594) Lancet 1197–1198.CrossRefGoogle Scholar

42. Re T (Adult: Refusal of Treatment) [1993] Fam 95 per Donaldson MR at 113.

43. [2012] EWHC 1639 (COP).

44. Ibid, per Peter Jackson J [55].

45. ‘Mentally incapacitated adults and decision-making: medical treatment and research’, Consultation Paper No. 129 (London: HMSO, 1993) para 3.20.

46. Mental Capacity Act 2005 Code of Practice, para 9.3.

47. BMA, above n 35, p 6.

48. [2012] EWHC 1390 (Fam).

49. Ibid, per Theis J [13].

50. [2002] EWHC 429 (Fam).

51. Ibid, per Butler-Sloss P [94].

52. Mental Capacity Act 2005 s3.

53. Mental Capacity Act 2005 Code of Practice, para 3.8.

54. Re Ak (Adult Patient) (Medical Treatment: Consent) [2001] 1 FLR 129.

55. [2012] EWHC 1390 (Fam).

56. Maclean, A ‘Advance directives and the rocky waters of anticipatory decision making’ (2008) 16(1) Med L Rev 1–22 at 22.CrossRefGoogle ScholarPubMed

57. He v a Hospital Trust [2003] EWHC 1017.

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

59. Re C (Adult: Refusal of Treatment) [1994] 1 WLR 290.

60. Re Ak (Medical Treatment: Consent) [2001] 1 FLR 129.

61. [2012] EWHC 1639 (COP) per Peter Jackson J [137].

62. Mental Capacity Act 2005s 25(2).

63. Mental Capacity Act 2005 Code of Practice, para 9.4.

64. [2002] EWHC 429 (Fam).

65. [2011] EWHC 2443 (Fam).

66. Ibid, per Baker J [6].

67. Ibid.

68. Ibid.

69. Kuczewski, M ‘Commentary: narrative views of personal identity and substituted judgment in surrogate decision making’ (1999) 27(1) J Law, Med & Ethics 32–36 at 34.CrossRefGoogle ScholarPubMed

70. W Healthcare Nhs Trust v H [2004] EWCA Civ 1324.

71. See Maclean, above n 56, at 16.

72. See Bond and Lowton, above n 12, at 456.

73. Wong, R ‘Advance care planning’ in Faull, C etal (eds) Handbook of Palliative Care (London: Wiley, 3rd edn, 2012) p 93.CrossRefGoogle Scholar

74. Mental Capacity Act 2005 Code of Practice, para 9.14.

75. [2012] EWHC 1390 (Fam) per Theis J [20].

76. Hickman, S etal ‘The Polst (Physician Orders for Life-Sustaining Treatment) paradigm to improve end-of-life care: potential state legal barriers to implementation’ (2008) 36 J Law Med & Ethics 119–140 at 119.CrossRefGoogle ScholarPubMed

77. Ibid, at 120.

78. The POLST can be changed and it is considered appropriate to review the decisions on the POLST form if the person is transferred from one setting to another; for example, home to hospital, if there is a change in overall health or if treatment preferences change.

79. Tambourino, L Advance Decisions (Bonn: Deutsches Referenzzentrum für Ethik, 2010), available at http://www.drze.de/in-focus/advance-decisions (accessed 2 April 2013).Google Scholar

80. Mental Capacity Act 2005 Code of Practice, para 9.15.

81. GMC Tomorrow's Doctors (London: General Medical Council, 2009) para 20 (g).

82. Preston Shoot, M and McKimm, J ‘Prepared for practice? Law teaching and assessment in Uk medical schools’ (2010) 36 J Med Ethics 694–699.CrossRefGoogle ScholarPubMed

83. The Foundation Programme Curriculum (2012) pp 25, 41, available at http://www.foundationprogramme.nhs.uk/pages/home/curriculum-and-assessment/curriculum2012 (accessed 2 April 2013).

84. See Bond and Lowton, above n 12, at 455.

85. RCP Advance Care Planning National Guidelines, Number 12 (London: Royal College of Physicians, 2009) p 2.Google ScholarPubMed

86. NHS, above n 5.

87. RCP, above n 85.

88. Froggatt, K etal ‘Advance care planning in care homes for older people: an English perspective’ (2009) 23 Palliat Med 332–338.CrossRefGoogle Scholar

89. Hayhoe, B and Howe, A ‘Advance care planning under the Mental Capacity Act 2005 in primary care’ (2011) Br J Gen Pract 537–541 at e538.CrossRefGoogle ScholarPubMed

90. British Social Attitudes, above n 7.

91. Wilkinson, A, Wenger, N and Shugarman, L Literature Review on Advance Directives (Santa Monica, CA: RAND Corporation, 2007).Google Scholar

92. See Davison and Simpson, above n 2.

93. Detering, K etal ‘The impact of advance care planning on end of life care in elderly patients: randomised controlled trial’ (2010) 340 BMJ c1345.CrossRefGoogle ScholarPubMed

94. See Davison and Simpson, above n 2..

95. See Detering etal, above n 93.

96. Smith, A etal ‘Racial and ethnic differences in advance care planning among patients with cancer: impact of terminal illness acknowledgement, religiousness, and treatment preferences’ (2008) 26 J Clin Oncol 4131–4137.CrossRefGoogle Scholar

97. See Detering etal, above n 93.

98. See Wong, above n 73, p 100.

99. RCP, above n 85, p 4.

100. See Davison and Simpson, above n 2.

101. Ibid.

102. Ibid.

103. See Detering etal, above n 93.

104. See Wong, above n 73.

105. See Detering etal, above n 93.

106. Schiff, R etal ‘Living wills and the Mental Capacity Act: a postal questionnaire survey of Uk geriatricians’ (2006) 35(2) Age and Aging 116–121 at 119.CrossRefGoogle ScholarPubMed

107. See Maclean, above n 56, at 22.

108. See Bond and Lowton, above n 12, at 454.

109. Ibid.

110. Ibid, at 450.

111. Coulter and Collins, above n 6.

112. King N Making Sense of Advance Directives (Washington, DC: Georgetown University Press, 1996).