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End-of-life Decisions for Patients with Prolonged Disorders of Consciousness in England and Wales: Time for Neuroscience-informed Improvements

Published online by Cambridge University Press:  29 December 2020

PAUL CATLEY ,
STEPHANIE PYWELL  and
ADAM TANNER
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Abstract

This article explores how the law of England and Wales1 has responded thus far to medical and clinical advances that have enabled patients with prolonged disorders of consciousness to survive. The authors argue that, although the courts have taken account of much of the science, they are now lagging behind, with the result that some patients are being denied their legal rights under the Mental Capacity Act 2005. The article further argues that English law does not comply with the United Kingdom’s commitments under the United Nations Convention on the Rights of Persons with Disabilities. Stressing the need for the law to keep in step with advances in science, the article concludes with robust recommendations for improvements, based on the latest research in neuroscience, to the way in which life-sustaining treatment decisions are made. This would mean that the wishes of patients, including those with covert awareness, can be better reflected in best interests assessments.

Keywords

best interestscovert awarenessCRPDEnglish lawlife-sustaining treatmentMental Capacity ActPDOC (prolonged disorders of consciousness)
Type
Bioethics Beyond Borders
Information
Cambridge Quarterly of Healthcare Ethics , Volume 30 , Issue 1 , January 2021 , pp. 73 - 89
Copyright
© The Author(s), 2020. Published by Cambridge University Press

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References

Notes

1. Hereinafter English law.

2. Airedale NHS Trust v Bland [1993] AC 789. Reference to it being the first such case to come before the English courts is at 797F per Sir Stephen Brown P.

3. Sir Stephen Brown P explained that the term PVS meant “a state of complete unawareness” (see note 2 at 795D) and as being “irreversible” and “not susceptible to any improvement” (at 797B). The terms VS and PVS have been used in this article rather than the less pejorative Unresponsive Wakefulness Syndrome (UWS) because these are the terms used by the English courts. For an argument for the use of the term UWS see: Laureys S, Celesia GG, Cohadon F, Lavrijsen J, León-Carrión J, Sannita WG, et al. Unresponsive wakefulness syndrome: A new name for the vegetative state or apallic syndrome. BMC Medicine 2010;8:68.

4. The case was heard first in the Family Division of the High Court, then on appeal by the Court of Appeal and the House of Lords—the three decisions being reported together—see note 2.

5. See note 2, at 813G-815G and 835A-838A per James Munby QC representing the Official Solicitor. The essence of Munby’s argument being found at 835D-E: “It is murder deliberately to hasten death by however short a period of time. ‘No doctor, nor any man, no more in the case of the dying than of the healthy, has the right deliberately to cut the thread of life.’ Reg. v. Adams (unreported), 8 April 1957.” Prior to going to court, the hospital authorities had consulted the local coroner as to whether they could lawfully withdraw treatment and had been advised that such a course of action ran the risk of criminal prosecution. See note 2 at 796C-D per Sir Stephen Brown P.

6. Tony Bland’s death was the last of the 96 deaths that arose in the crush that ensued when too many football fans were allowed onto a section of the terraces at the Hillsborough football ground.

7. See note 2, at 879G per Lord Browne-Wilkinson.

8. See note 2, at 804D per Sir Stephen Brown P.

9. See note 2, at 808D per Sir Thomas Bingham MR.

10. See note 2, at 825E per Hoffman LJ.

11. See note 2, at 884B per Lord Browne-Wilkinson. Lord Keith at 859C–D: “In my judgment it does no violence to the principle to hold that it is lawful to cease to give medical treatment and care to a P.V.S. patient who has been in that state for over 3 years, considering that to do so involves invasive manipulation of the patient’s body to which he has not consented and which confers no benefit upon him.” Lord Goff at 868C–D: “The question is whether it is in the best interests of the patient that his life should be prolonged by the continuance of this form of medical treatment or care.” Lord Lowry at 876G–H: “Even though the intention to bring about the patient’s death is there, there is no proposed guilty act because, if it is not in the interests of an insentient patient to continue the life-supporting care and treatment, the doctor would be acting unlawfully if he continued the care and treatment and would perform no guilty act by discontinuing.”

12. See note 2, at 897H per Lord Mustill.

13. See note 2, at 898D.

14. R v Bingley Magistrates’ Court, ex parte the Reverend James Morrow. The Times 1994 Apr 28.

15. See note 2, at 880B and 885E.

16. See note 2, at 890C and 891B.

17. See note 14, per Staughton LJ.

18. HL Deb 10 January 2005 vol 668 cc11–26, 15.

19. MCA s4 (6) & (7).

20. MCA s24.

21. MCA s25 (5) & (6).

22. See note 2, at 805F per Sir Stephen Brown P.

23. See note 2, at 815G–816A per Sir Thomas Bingham MR, 824C–D per Butler-Sloss LJ, and 834D–E per Hoffman LJ.

24. See note 2, at 859E–G per Lord Keith, 873F–H and 874D–E per Lord Goff, 875F–G per Lord Lowry and 885E–F per Lord Browne-Wilkinson.

25. Re G [1995] 2 FCR 46.

26. NHS Trust A v M; NHS Trust B v H [2001] Fam 348.

27. The terms “persistent vegetative state” and “permanent vegetative state” have both been used by the English courts; no significant distinction has been drawn between the two states by the courts and in this article the acronym PVS is used to cover both.

28. Re D [1998] 1 FLR 411.

29. Following Bland, the House of Lords’ Select Committee on Medical Ethics had called for PVS to be defined and a code of practice developed relating to its management. The resultant guidelines produced by the Royal College of Physicians and published in the Journal of the Royal College of Physicians in 1996 were considered in some detail in Re D see particularly [1998] 1 FLR 411, 417–418.

30. Both quotes [1998] 1 FLR 411, 420, per Sir Stephen Brown P.

31. W (by her litigation friend, B) v M (by her litigation friend, the Official Solicitor) and others [2011] EWHC 2443 (Fam).

32. See note 31, at [1].

33. See for example: American Congress of Rehabilitation Medicine. Recommendations for use of uniform nomenclature pertinent to persons with severe alterations in consciousness. Archives of Physical Medicine and Rehabilitation 1995;76:205–9; Giacino, JT, Zasler, ND. Outcome after severe traumatic brain injury: Coma, the vegetative state, and the minimally responsive state. Journal of Head Trauma Rehabilitation 1995;10:40–56 CrossRefGoogle Scholar; Giacino JT, Klamar K. The vegetative and minimally conscious states: A comparison of clinical features and functional outcome. Journal of Head Trauma Rehabilitation 1997;12(4):36–51; Giacino JT, Zasler ND, Katz DI, Kelly JP, Rosenburg JH, Filley CM. Development of practice guidelines for assessment and management of the vegetative and minimally conscious states. Journal of Head Trauma Rehabilitation 1997; 12(4):79–89.

34. Giacino, JT, Ashwal, S, Childs, N, Cranford, R, Jennett, B, Katz, DI, et al. The minimally conscious state: Definition and diagnostic criteria. Neurology 2002;58(3):349–53.CrossRefGoogle ScholarPubMed

35. See note 31, at [4].

36. See note 31, at [221].

37. See note 31, at [35].

38. See note 31, at [246]. This approach had previously been developed by Thorpe LJ in Re A (medical treatment; male sterilisation) [2000] 1 FCR 193.

39. See note 31, at [220]–[222].

40. See note 31, at [223]–[230].

41. See note 31, at [231]–[233].

42. See note 31, at [234]–[237].

43. See note 31, at [238]–[239].

44. See note 31, at [240]–[241].

45. See note 31, at [242].

46. See note 31, at [107].

47. See note 31, at [225].

48. See note 31, at [249].

49. See note 31, at [104].

50. Seel, RT, Sheer, M, Whyte, J, Katz, DI, Giacino, JT, Rosenbaum, AM, et al. Assessment scales for disorders of consciousness: Evidence based recommendations for clinical practice and research. Archives of Physical Medicine and Rehabilitation 2010; 91(12)CrossRefGoogle ScholarPubMed; Jennett B, Plum F. Persistent vegetative state after brain damage (A syndrome in search of a name). Lancet 1972;1:734–7; Giacino JT, Kalmar K. Diagnostic and prognostic guidelines for the vegetative and minimally conscious states. Neuropsychological Rehabilitation 2005;15(3–4):166–74; Giacino et al. 2002 (see note 35); Lammi MH, Smith VH, Tate RL, Taylor CM. The minimally conscious state and recovery potential: A follow-up study 2 to 5 years after traumatic brain injury. Archives of Physical Medicine and Rehabilitation 2005;86(4):746–54; Luauté J, Maucort-Boulch B, Tell L, Quelard F, Sarraf T, Iwaz J, et al. Long-term outcomes of chronic minimally conscious and vegetative states. Neurology 2010;75:246–52; Royal College of Physicians. The Vegetative State. London: RCP; 2003.

51. See note 31, particularly [189]–[218].

52. See for example In the Matter of Royal Bournemouth and Christchurch Hospitals NHS Foundation Trust v TG & OG [2019] EWCOP 21 where Justice Cohen states at [28]: “I have had to do what is sometimes called a balance sheet exercise.” The balance sheet approach has sometimes been criticized for example in M v Mrs. N (By her litigation friend, the Official Solicitor), Bury Clinical Commissioning Group, A Care Provider [2015] EWCOP 76 Justice Hayden stated at [70] that “I consider that a formulaic ‘balance sheet’ approach to Mrs. N’s best interests is artificial.” Nevertheless, in both this case and in Abertawe Bro Morgannwg University Local Health Board v RY (by his litigation friend the Official Solicitor), CP [2016] EWCOP 57 where he repeated his earlier criticism, he still carried out a balancing act in weighing up the arguments for and against providing treatment.

53. [2013] UKSC 67.

54. Aintree University Hospitals NHS Foundation Trust v James [2013] EWCA Civ 65 in particular Sir Alan Ward at [50].

55. See note 53, at [18].

56. See note 53, at [24].

57. An NHS Trust and others v Y (Intensive Care Society and others intervening) [2019] AC 978.

58. In her judgment (See note 57, at [75]) Lady Black JSC refers to four guides—the most recent being the interim guidance document produced in December 2017 by the General Medical Council (GMC), the British Medical Association (BMA) and the Royal College of Physicians (RCP) entitled Decisions to withdraw clinically-assisted nutrition and hydration (CANH) from patients in permanent vegetative state (PVS) or minimally conscious state (MCS) following sudden-onset profound brain injury. In 2018 this guide was replaced by the RCP and BMA’s Clinically-assisted nutrition and hydration (CANH) and adults who lack the capacity to consent: Guidance for decision-making in England and Wales. This new guidance has been endorsed by the GMC.

59. See note 53, at [126].

60. In Bland, see note 2, Munby QC had argued at 855F “If the matter is dealt with out of court then the decision is taken by doctors out of court who are not experts in moral and ethical issues.” Similarly, in Y see note 58 at [89] the Official Solicitor highlighted the dangers of wrong conclusions as to the patient’s best interests.

61. See Halliday, S, Formby, A, Cookson, R. An assessment of the court’s role in the withdrawal of clinically assisted nutrition and hydration from patients in the permanent vegetative state. Medical Law Review 2015;23(4):556–87CrossRefGoogle ScholarPubMed in which they estimate the cost of taking a withdrawal of CANH case to court as being approximately £53,000 and the cost of looking after a patient in PVS as £92,000 per annum.

62. In W v M (see note 31) Justice Baker called for consideration to be given to providing families with nonmeans tested legal aid [260].

63. See note 57, at [125].

64. See note 31, at [35].

65. See for example this comment on the delay caused by taking cases to court: “Unlike cases where the patient has been diagnosed as being in the MCS, such delay is not required for the purposes of judicial scrutiny of the best interests determination. The question of best interests has already been settled as a matter of law by the Bland case.” Halliday, S, Formby, A, Cookson, R. An assessment of the court’s role in the withdrawal of clinically assisted nutrition and hydration from patients in the permanent vegetative state. Medical Law Review 2015;23(4):556–87, 575.CrossRefGoogle ScholarPubMed

66. In Royal Bournemouth v TG (see note 52) it was held that continued treatment of a VS patient was in the patient’s best interests because of her and her family’s strong religious beliefs. By contrast in NHS v VT [2013] EWHC B26 similar arguments based on the religious beliefs of an MCS patient and his family failed. A possible distinction was that in VT’s case the question was whether VT should be resuscitated whereas in TG’s case the question was about withdrawal of ANH.

67. Childs NL, Mercer WN, Childs HW. Accuracy of diagnosis of persistent vegetative state. Neurology 1993;43(8):1465.

68. Andrews, K, Murphy, L, Munday, R, Littlewood, C. Misdiagnosis of the vegetative state: Retrospective study in a rehabilitation unit. BMJ 1996;313:13.CrossRefGoogle Scholar

69. See note 34.

70. See note 31, at [259].

71. RCP and BMA Clinically-assisted nutrition and hydration (CANH) and adults who lack the capacity to consent: Guidance for decision-making in England and Wales, 2018, 51.

72. Schnakers, C, Vanhaudenhuyse, A, Giacino, J, Ventura, M, Boly, M, Majerus, S, et al. Diagnostic accuracy of the vegetative and minimally conscious state: Clinical consensus versus standardized neurobehavioral assessment. BMC Neurology 2009;9:35.CrossRefGoogle ScholarPubMed

73. See for example: Re D (Medical Treatment) [1998] 2 FLR 36; NHS Trust A v H [2001] 2 FLR 501; A (A Child) [2016] EWCA Civ 759.

74. In W v M it is stated that “Mr. Badwan expressed the view that ANH should never be withdrawn from a patient in MCS, although in re-examination he conceded that if such a patient was in the terminal stages of a disease such as cancer different circumstances would apply.” See note 31, at 198.

75. See note 52.

76. The 2018 guidance (page 10) requires that “all reasonable steps should be taken to get a second clinical opinion where it is proposed to stop, or not start, CANH and the patient is not within hours or days of death.” The second-opinion clinician should have relevant knowledge and experience, should not be part of the treating team and should be able to act independently.

77. MCA s1 (2).

78. MCA s1 (3).

79. Committee on the Rights of Persons with Disabilities, 11th Session, General Comment No.1 (2014), para 21.

80. Martin W, Michalowski S, Jütten T, Burch M. Achieving CRPD Compliance: Is the Mental Capacity Act of England and Wales compatible with the UN Convention on the Rights of Persons with Disabilities? If not, what next? Essex Autonomy Project, 2014, Executive Summary.

81. In NHS Windsor and Maidenhead Clinical Commissioning Group v SP (by her litigation friend the Official Solicitor) (Withdrawal of CANH) [2018] EWCOP 11 a case in which doctors and family all favoured withdrawal of CANH for a PVS patient there was passing mention at [26] of the CRPD in the course of the judgment that CANH could be withdrawn from a patient in PVS.

82. For discussion as to the merits or otherwise of the CRPD see for example: Szmukler, G. “Capacity”, “best interests”, “will and preferences” and the UN Convention on the Rights of Persons with Disabilities. World Psychiatry 2019;18(1):34–41.CrossRefGoogle ScholarPubMed

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110. One patient could complete the motor imagery task, but not the spatial imagery task.

111. See note 98, Owen 2019, at 526.

112. In Fernández-Espejo D, Norton L, Owen AM. The clinical utility of fMRI for identifying covert awareness in the vegetative state: A comparison of sensitivity between 3T and 1.5T. PLoS ONE 2014;9(4):e95082. The authors conclude that clinical 1.5T MRI scanners can detect awareness with a reliability comparable to that obtained by 3T scanners in research settings.

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119. Abdalmalak A, Milej D, Diop M, Shokouhi M, Naci L, Owen AM, et al. Can time-resolved NIRS provide the sensitivity to detect brain activity during motor imagery consistently? Biomedical Optics Express 2017;8(4):2162–72; Rupawala M, Dehgani H, Lucas SJE, Tino P, Cruse D. Shining a light on awareness: A review of functional near-infrared spectroscopy for prolonged disorders of consciousness. Frontiers in Neurology 2018;9:350.

120. Peterson, A, Naci, L, Weijer, C, Cruse, D, Fernández-Espejo, D, Graham, M, et al. Assessing decision-making capacity in the behaviourally nonresponsive patient with residual covert awareness. AJOB Neuroscience 2013;4(4):3–14.CrossRefGoogle Scholar

121. MCA s2(1).

122. MCA s1(2).

123. MCA s1(3).

124. MCA s2(3).

125. The test is on the balance of probabilities (MCA s2(4)).

126. Article 12(4) CRPD.

127. MCA s4.

128. MCA s4(6)(a).

129. Gross v Switzerland (2014) 58 EHRR 7 at para 58.

130. See note 92, Peterson et al. 2013, at 4.