Medical treatment of dementia patients at the end of life: Can the law accommodate the personal identity and welfare problems?

European Journal of Health Law

Volumn 13, Issue 3, 2006, Pages 219-234

  Lewis, Penney ^a  

^a KING'S COLLEGE LONDON   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

DECISION MAKING; DEMENTIA; DYING; HUMAN; HUMAN RIGHTS; IDENTITY; LAW; LEGAL ASPECT; PATIENT AUTONOMY; PATIENT CARE PLANNING; PATIENT DECISION MAKING; REVIEW; WELFARE;

ADVANCE DIRECTIVES; CONFLICT (PSYCHOLOGY); DECISION MAKING; DEMENTIA; ENGLAND; EUROPE; HUMANS; MENTAL COMPETENCY; PATIENT ADVOCACY; PATIENT RIGHTS; PERSONAL AUTONOMY; PHILOSOPHY, MEDICAL; PROXY; TERMINAL CARE;

EID: 33751579116     PISSN: 09290273     EISSN: None     Source Type: Journal    
DOI: 10.1163/157180906778852411     Document Type: Review

References (93)

1. Lord Chancellor's Department (Eng.), Making Decisions (1999) Cm 4465, [13].
2. N. Cantor, 'Prospective Autonomy: On the Limits of shaping one's post-competence medical fate' (1992) 8 J Contemp Health L & Pol'y 13.
3. R. Dresser, 'Dworkin on Dementia: elegant theory, questionable policy' (1995) 25(6) Hastings Center Rep. 32, 34.
4. A. Buchanan & D. Brock, Deciding for Others: The Ethics of Surrogate Decision-Making (1990) 99.
5. A. Buchanan & D. Brock, Deciding for Others: The Ethics of Surrogate Decision-Making (1990) 99. Ibid.
6. Dresser, above n. 3, 34; K. Stern, 'Advance Directives' (1994) 2 Med. L. Rev. 57, 75.
7. R. Dresser, 'Missing Persons: Legal Perceptions of Incompetent Patients' (1994) 46 Rutgers L. Rev. 609, 635.
8. Dresser discusses at length the problems associated with implementing advance directives when they appear to conflict with present experiential interests of the incompetent person. R. Dresser, Rutgers L. Rev. Ibid. 624-32.
9. See D. Parfit, Reasons and Persons (1986) 204-209;
10. R. Dresser, 'Life, Death, and Incompetent Patients: Conceptual Infirmities and Hidden Values in the Law' (1986) 28(3) Ariz. L. Rev. 373, 379-81.
11. R. Dworkin, Life's Dominion: An argument about abortion and euthanasia (1993) 180-8, 210-16.
12. Dworkin defines 'critical interests' as 'interests that it does make [one's] life genuinely better to satisfy, interests [one] would be mistaken, and genuinely worse off, if [one] did not recognize.' He contrasts these 'critical interests' with 'experiential interests', which one pursues because one enjoys the experience, such as listening to a particular type of music. R. Dworkin, Life's Dominion: An argument about abortion and euthanasia (Ibid. 201.
13. S. Holm, 'Autonomy, authenticity, or best interest: Everyday decision-making and persons with dementia' (2001) 4 Med., Health Care & Phil. 153, 157.
14. A. Buchanan, 'Advance directives and the personal identity problem' (1988) 17 Phil. & Pub. Aff. 277.
15. The philosophical debate over the criteria for personhood is beyond the scope of this article. Buchanan describes a 'considerable consensus' that personhood requires at least the abilities to (1) be self-conscious over time; (2) comprehend reasons for or against acting and act on them; and (3) 'engage in purposive sequences of actions.' A. Buchanan, Phil. & Pub. Aff. Ibid. 283-4.
16. See J. Feinberg, 'The Problem of Personhood' in T. Beauchamp & L. Walters, eds., Contemporary Issues in Bioethics (1982) 108;
17. M.A. Warren, 'The Moral and Legal Status of Abortion' (1975) 57 The Monist 143;
18. D. Parfit, 'Later Selves and Moral Principles' in A. Montefiore, ed., Philosophy and Personal Relations (1973).
19. Although the issue of a potential conflict between these surviving interests and present experiential interests of the incompetent may arise if the individual retains interests (for example is profoundly neurologically impaired but not in a persistent vegetative state (PVS)). This issue will be discussed below, see text accompanying nn. 15-20.
20. Buchanan, above n. 11, 297-8. On this theory, the weight to be attached to the advance directive will be a function of the degree of psychological continuity between its creator and the resulting person. Ibid. 298.
21. As long as the incompetent retains some interests ie is not in a PVS.
22. Indeed welfare-promotion was one of the rationales supporting advance directives mentioned earlier. See above text accompanying n. 4.
23. Dworkin, above n. 9. See also, Cantor, above n. 2, 28-30, 45-46, suggesting that such a directive should be implemented even over the resistance of its now incompetent creator. Cantor does allow that '[a]t some point the course prescribed by the advance directive becomes so intrinsically inhumane that decision-makers may justly refuse to fulfil the directive. But that point would not be reached ... so long as the restraint of the incompetent persona would only be temporary.'
24. Dresser, above n. 7, 628-30, 633.
25. Ibid. 630-1.
26. Dresser, 'Dworkin on dementia', above n. 3, 35.
27. In England and Wales, see Mental Capacity Act 2005, ss. 9-14, 22-23 (expected to come into force in April 2007, allowing a competent person to appoint a donee of a lasting power of attorney to make medical decisions on her behalf after the onset of incompetence).
28. In England and Wales, see Mental Capacity Act 2005, ss. 16-20 (expected to come into force in April 2007, allowing a court to appoint a deputy to make medical decisions on behalf of an incompetent person who has not made a lasting power of attorney).
29. Surrogate or family consent statutes allow for a surrogate to be appointed by default (either long-term or to make a particular decision) without the prior involvement of the now incompetent person. These statutes are widely used in North America. The U.S. provisions are listed in A.K. Dayton et al., 'Surrogate consent statutes' (2005) 3 Advising the Elderly Client § 33:43.
30. In Canada, see Advance Health Care Directives Act (Nfld.) S.N.L. 1995, c. A-4.1, s. 10;
31. Health Care Consent Act (Ont.) S.O. 1996, c. 2, Sch. A, s. 20;
32. Consent to Treatment and Health Care Directives Act (P.E.I.) R.S.P.E.I. 1998, c. C-17.2, s. 11;
33. Civil Code of Québec S.Q. 1991, c. 64, s.15;
34. Health Care Directives and Substitute Health Care Decision Maker Act (Sask.) S.S. 1997, c. H-0.001, ss. 15-16;
35. Health Act (Yuk.) R.S.Y. 2002, c. 106, s. 45(1)(c)-(f).
36. In the absence of jurisprudence or statutory intervention allowing the appointment of a surrogate, the medical professional is effectively the proxy decision-maker, unless the court's intervention is sought. See, e.g., Re F (mental patient: sterilisation) [1990] 2 A.C. 1 (H.L.).
37. There is also an objective form of this approach, focusing on the decision a reasonable person would make in the circumstances. However, this test is hard to reconcile with the autonomy rationale which purports to render legitimate the substituted judgment approach. If there is insufficient evidence to support the ascription of a particular type of moral reasoning to the incompetent person, then it is impossible to argue that such a substituted judgment is a morally sound approximation of the autonomous choice that the incompetent would have made if competent. The objective substituted judgment approach is more consistent with the best interests test than the truly subjective substituted judgment approach, although it must be noted that there is no bright-line distinction between the objective and subjective versions of substituted judgement, particularly when there is little subjective evidence of the incompetent's wishes. See L. Harmon, 'Falling Off the Vine: Legal Fictions and the Doctrine of Substituted Judgment' (1990) 100 Yale L.J. 1, 63-5.
38. Buchanan and Brock, above n. 4, 112-14.
39. See Buchanan and Brock, ibid. 112-17; Harmon, above n. 25, 63-5; U.S. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Deciding to Forego Life-Sustaining Treatment (1983) 132-3, 136. For an influential counter-example in which the subjective substituted judgment approach was applied to someone who had never been competent, see Superintendent of Belchertown State Sch. v. Saikewicz (1977) 370 N.E.2d 417, 430-1 (Mass. S.J.C.). Subsequent U.S. courts have recognised that 'the best interests standard applies when the patient has never been competent or has not expressed her wishes concerning medical treatment.' In re A.M.B. (2001) 248 Mich. App. 144, 200 (Mich. C.A.). See also, In re K.I. (1999) 735 A.2d 448, 455-6 (D.C.C.A.); In re Christopher I. (2003) 131 Cal.Rptr.2d 122, 133 (Cal. C.A.) ('The substituted judgment test is ... an inappropriate tool for making medical decisions for patients like Christopher, who has never been competent to make his own decisions or express his emotions and feelings on the subject.'). Similarly, in Canada, see Re Eve [1986] 2 S.C.R. 388 (S.C.C.) (applying the best interests test when the incompetent person was never competent).
40. See above text accompanying nn. 8-14.
41. See above text accompanying nn. 15-20.
42. For a comparative study, see C. Vezzoni, 'Engineering Rights: The Legal Status and Social Practice of Advance Directives' in A. Klijn et al., eds., Regulating Physician-Negotiated Death (Amsterdam: Elsevier, 2001) 67, 69-70.
43. C. Vezzoni, 'Engineering Rights: The Legal Status and Social Practice of Advance Directives' in Regulating Physician-Negotiated Death (2001) 67, Ibid.
44. See. Mental Capacity Act 2005, ss. 24-26 (expected to come into force in April 2007). Even prior to the coming into force of these provisions, at common law persons can refuse unwanted treatment in advance of incapacity. Re T (Adult: Refusal of Treatment) [1992] 3 W.L.R. 782 (C.A.); Airedale NHS Trust v. Bland [1993] A.C. 789, 864 (H.L.); Re C (Adult Refusal of Treatment) [1994] 1 W.L.R. 290 (C.A.); Sidaway v. Board of Governors of Bethlem Royal Hospital [1985] A.C 871, 882, 888 (H.L.); Re M.B. (Medical Treatment) [1997] 2 F.L.R. 426, 432 (C.A.) ('A mentally competent patient has an absolute right to refuse to consent to medical treatment for any reason, rational or irrational, or for no reason at all, even where that decision may lead to his or her own death'); Re A.K. (Medical Treatment: Consent) [2001] 1 F.L.R. 129 (H.C.); H.E. v. A Hospital NHS Trust [2003] 2 F.L.R. 408 (H.C.).
45. See Cruzan v. Director, Mo. Dep't of Health (1990) 497 U.S. 261, 278 (U.S.S.C.) ('a competent person has a constitutionally protected liberty interest in refusing unwanted medical treatment'); Patient Self-Determination Act (U.S.), Omnibus Budget Reconciliation Act of 1990, Pub. L. No. 101-508, 4206, 4751, 104 Stat. § 1388, 1388-115, 1388-204 (codified at 42 USC § 1395cc(f) (Medicare), 1396a(w) (Medicaid) (1994)) (requiring health care facilities that receive federal funding (including any facility participating in Medicare or Medicaid) to inform patients upon admission of their rights under state law 'to make decisions concerning [their] medical care, including the right to accept or refuse medical or surgical treatment and the right to formulate advance directives ... such as a living will or durable power of attorney for health care' if these are recognized under state law). For a list of U.S. state provisions, see K.A. Menninger, II, 'Proof of Basis for Refusal or Discontinuance of Life-Sustaining Treatment on Behalf of Incapacitated Person' (2005) 40 Am. Jur. Proof of Facts 3d 287, § 17, n. 62.
46. See Ciarlariello v. Schacter [1993] 2 S.C.R. 119 (S.C.C.); Nancy B. v. Hôtel-Dieu de Québec (1992) 86 D.L.R. (4th) 385 (Qué. S.C.); Malette v. Shulman (1990) 72 O.R. (2d) 417 (Ont. C.A.); Rodriguez v. British Columbia (Attorney-General) [1993] 3 S.C.R. 519, [41] (S.C.C.) (recognising a common law right of patients to refuse consent to medical treatment); Personal Directives Act (Alta.) R.S.A. 2000, c. P-6, s. 14(2);
47. Health Care (Consent) and Care Facility (Admission) Act (B.C.) R.S.B.C. 1996, c. 181, s. 12.1;
48. Health Care Directives Act (Man.) S.M. 1992, c. 33, C.C.S.M. c. H-27, ss. 5, 7, 13(1), (3);
49. Advance Health Care Directives Act (Nfld.) S.N.L. 1995, c. A-4.1, s. 5(1);
50. Health Care Consent Act (Ont.) S.O. 1996, c. 2, Sch. A, s. 26;
51. Consent to Treatment and Health Care Directives Act (P.E.I.) R.S.P.E.I. 1998, c. C-17.2, ss. 17(2), 20;
52. Civil Code of Québec S.Q. 1991, c. 64, s. 10;
53. Health Care Directives and Substitute Health Care Decision Maker Act (Sask.) S.S. 1997, c. H-0.001, s. 5.
54. See Rogers v. Whitaker (1992) 175 C.L.R. 479, 486-7 (H.C. Aust.); Medical Treatment Act 1988 (Vic.), s. 5;
55. Medical Treatment Act 1994 (A.C.T.), s. 6;
56. Natural Death Act 1988 (N.Terr.), s. 4 (in case of terminal illness);
57. Consent to Medical Treatment and Palliative Care Act 1995 (S.A.), s. 7 (in case of terminal illness or persistent vegetative state);
58. Power of Attorney Act 1998 (Qld.), s. 35(2)(b).
59. See Ryan v. Attorney General [1965] I.R. 294 (S.C.); Re A Ward of Court (withholding medical treatment) (No. 2) [1996] 2 I.R. 79, 156 (S.C., Denham J.); North Western Health Board v. W.(H.) [2001] I.E.S.C. 90 (S.C.).
60. See Law on Contracts for Medical Care, Art. 450(1), discussed by L.F. Markenstein, 'The Codification in the Netherlands of the Principal Rights of Patients: A Critical Review' (1995) 2(1) Eur. J. Health L. 33.
61. See Law concerning the rights of the patient of 22 Aug. 2002, Art. 8, discussed by H. Nys, 'Recent Developments in Health Law in Belgium' (2006) 13(2) Eur. J. Health L. 95.
62. See Patients' Rights Act of 1 July 1998 No. 482, §§ 6, 7, translated in J. Vestergaard, 'Medical Aid in Dying under Danish Law: Mainly Regarding Living Wills and Other Forms of Renouncing Life Prolonging Treatment' (2000) 7(4) Eur. J. Health L. 405, 409.
63. See, e.g., Malette v. Shulman (1990) 72 O.R. (2d) 417 (Ont. C.A.).
64. See, e.g., Conroy (1985) 486 A.2d 1209 (N.J.S.C.); Cruzan v. Harmon (1988) 760 S.W.2d 408, 425 (Missouri S.C.), affirmed sub nom Cruzan v. Director, Mo. Dep't of Health (1990) 497 U.S. 261 (U.S.S.C.).
65. Personal Directives Act (Alta.) R.S.A. 2000, c. P-6, s. 14(3);
66. Representation Agreement Act (B.C.) R.S.B.C. 1996, c. 405, s. 16 (although s. 7(2.1) provides that 'A representative may not be authorized ... to help make, or to make on the adult's behalf, a decision to refuse life-supporting care or treatment');
67. Health Care Directives Act (Man.) S.M. 1992, c. 33, C.C.S.M. c. H-27, s. 13(2), (4);
68. Advance Health Care Directives Act (Nfld.) S.N.L. 1995, c. A-4.1, s. 12(1);
69. Substitute Decision Act (Ont.) S.O. 1992, c. 30, ss. 66(3), 67;
70. Health Care Consent Act (Ont.) S.O. 1996, c. 2, Sch. A, s. 21;
71. Consent to Treatment and Health Care Directives Act (P.E.I.) R.S.P.E.I. 1998, c. C-17.2, s. 13;
72. Civil Code of Québec S.Q. 1991, c. 64, s. 12;
73. Health Care Directives and Substitute Health Care Decision Maker Act (Sask.) S.S. 1997, c. H-0.001, s. 12;
74. Health Act (Yuk.) R.S.Y. 2002, c. 106, ss. 45(5), (6).
75. See In re Storar (1981) 420 N.E.2d 64, 72 (N.Y.C.A.) (requiring 'clear and convincing evidence' of the incompetent person's previous competent intent); Cruzan v. Director, Mo. Dep't of Health (1990) 497 U.S. 261, 283 (holding that a state may require clear and convincing evidence in proceedings where a guardian wishes to withdraw artificial nutrition and hydration from a person in a persistent vegetative state); Conroy (1985) 486 A.2d 1209, 1229-31 (requiring a clear expression of the person's former preferences regarding treatment); In re Martin (1995) 450 Mich. 204 (Mich. S.C.).
76. See 'Developments in the Law - Medical Technology and the Law' (1990) 103 Harv. L. Rev. 1519, 1646-51; Dresser, above n. 8, 374-9; Schiavo ex rel. Schindler v. Schiavo (2005) 403 F.3d 1289 (11th Cir.) (clear and convincing evidence standard not mandated by the Due Process Clause of the Fourteenth Amendment); Matter of Edna M.F. (1997) 210 Wis. 2d 557 (Wis. S.C.) (requiring guardian to demonstrate incompetent's prior wishes by a preponderance of the evidence).
77. Dresser, above n. 7, 622-3, citing R. Dworkin, 'Autonomy and the Demented Self' (1986) 64 Milbank Q. 4, 14 (Supp. 2).
78. See Airedale NHS Trust v. Bland [1993] A.C. 789, 895 (Lord Mustill), 872 (Lord Goff) (H.L.) (rejecting substituted judgment as 'simply a fiction'); Re A (Children) (Conjoined Twins: Surgical Separation) [2001] Fam. 147, 185 (C.A., Ward L.J.); Law Commission of England and Wales, Mentally Incapacitated Adults and Decision-Making: An Overview, Consultation Paper No. 119 (1991) [4.22]-[4.23].
79. Law Commission of England and Wales, Mental Incapacity, Report No. 231 (1995) [3.25]-[3.31].
80. The Act is expected to come into force in April 2007. See also, Lord Chancellor's Department, Making Decisions, Cm 4465 (1999) [1.11].
81. Re F (Mental Patient: Sterilisation) [1990] 2 A.C. 1 (H.L.). The best interests approach will remain the operative test once the Mental Capacity Act 2005, s. 4 comes into force (expected in April 2007).
82. See, e.g., In re K.I. (1999) 735 A.2d 448 (D.C.C.A.) (requiring clear and convincing evidence that terminating life-sustaining treatment is in the incompetent person's best interests); Woods v. Com. (2004) 142 S.W.3d 24 (Ky. S.C.); In re Guardianship of L.W. (1992) 167 Wis. 2d 53 (Wis. S.C.). Some states use the substituted judgment and best interests tests in the alternative. See, e.g., Conservatorship of Wendland (2001) 26 Cal. 4th 519 (Cal. S.C.) (requiring clear and convincing evidence either that the incompetent person wished to refuse life-sustaining treatment or that to withhold such treatment would be in her best interests).
83. See above, text accompanying nn. 47-48.
84. 'Impairing condition' is defined in s. 31(3) of the Mental Capacity Act 2005: 'Impairing condition' means a condition which is (or may be) attributable to, or which causes or contributes to (or may cause or contribute to), the impairment of, or disturbance in the functioning of, the mind or brain.' This definition refers back to the threshold criterion of the test for capacity: 'For the purposes of this Act, a person lacks capacity in relation to a matter if at the material time he is unable to make a decision for himself in relation to the matter because of an impairment of, or a disturbance in the functioning of, the mind or brain.' Mental Capacity Act 2005, s. 2(1).
85. Pretty v. United Kingdom (2002) 35 E.H.R.R. 1, [61].
86. Pretty v. United Kingdom (2002) 35 E.H.R.R. 1, [65] (emphasis added).
87. Pretty v. United Kingdom (2002) 35 E.H.R.R. 1, [48].
88. See Vezzoni, above n. 30, 73.
89. Abdulaziz, Cabales and Balkandali v. United Kingdom (1985) 7 E.H.R.R. 471, [71]. See also, Inze v. Austria (1988) 10 E.H.R.R. 394 [36]; Rasmussen v. Denmark (1985) 7 E.H.R.R. 371, [29]; Botta v. Italy (1998) 26 E.H.R.R. 241, [39]; Haas v. Netherlands (2004) 39 E.H.R.R. 41, [41]; Van Raalte v. Netherlands (1997) 24 E.H.R.R. 503, [30]; Camp and Bourimi v. Netherlands (2002) 34 E.H.R.R. 59, [34].
90. See, e.g., Botta v. Italy (1998) 26 E.H.R.R. 241; Zehnalová and Zehnal v. Czech Republic No. 3862/97, 14 May 2002; Marzari v. Italy (1999) 28 E.H.R.R. CD 175; Sentges v. Netherlands (2004) 7 C.C.L. Rep. 400.
91. See Case relating to certain aspects of the laws on the use of languages in education in Belgium v. Belgium Nos. 1474/62, etc., 23 July1968, (1979-80) 1 E.H.R.R. 252, [9] ('a measure which in itself is in conformity with the requirements of the Article enshrining the right or freedom in question may however infringe this Article when read in conjunction with Article 14 for the reason that it is of a discriminatory nature').
92. See Pretty v. United Kingdom (2002) 35 E.H.R.R. 1, [89]; Case relating to certain aspects of the laws on the use of languages in education in Belgium v. Belgium Nos. 1474/62, etc., 23 July1968, (1979-80) 1 E.H.R.R. 252, [10].
93. See above, text accompanying nn. 53-54.