Hobson's choice: Reproductive choices for women with learning disabilities

Medicine and Law

Volumn 17, Issue 2, 1998, Pages 149-165

  Keywood, Kirsty ^a  

^a UNIVERSITY OF LIVERPOOL   (United Kingdom)

Author keywords

Adults; Best interests; Mental incapacity; Minors; Sterilisation

Indexed keywords

ADOLESCENT; ADULT; ARTICLE; COMPETENCE; CONTRACEPTION; DECISION MAKING; ETHICS; FEMALE; FEMALE STERILIZATION; HUMAN; HUMAN RIGHTS; INFORMED CONSENT; LAW; LEARNING DISORDER; MEDICOLEGAL ASPECT; UNITED KINGDOM;

EID: 0032452780     PISSN: 07231393     EISSN: None     Source Type: Journal    
DOI: None     Document Type: Article

References (66)

1. See, for example G Dworkin, Theory and Practice of Autonomy, 1988.
2. See, for example Re D (a minor) (wardship: sterilisation) [1976] 1 All ER 326; Re B (a minor) (wardship: sterilisation) [1987] 2 All ER 206; Re M (a minor) (wardship: sterilisation) [1988] 2 FLR 497; Re P (a minor) (wardship: sterilisation) [1989] 1 FLR 182; F v West Berkshire Health Authority and another (Mental Health Act Intervening) [1989] 2 All ER 545; Re E (a minor) (medical treatment) [1992] Fam Law 15; Re GF (Medical Treatment) [1992] Fam Law 63; Re W (Mental Patient) (Sterilisation) [1993] 1 FLR 381; Re L (1996) BMLR 87; Re LC (medical treatment: sterilisation) [1997] 2 FLR 258.
3. "Alberta won't apologize for sterilization of woman", The Gazette (Montreal), March 13, 1996.
4. Tsuchiya, "Eugenic Sterilizations in Japan and Recent Demands for an Apology: A Report", (1997) 3(1) Newsletter of the Network on Ethics and Intellectual Disability
5. The Department of Obstetrics and Gynecology at the University of Michigan found that the overriding concern of parents was the fear of pregnancy for their daughters, although many parents were also concerned about managing their daughters' menstrual cycle. The main reasons for considering sterilisation as a suitable contraceptive regime were: the fear of pregnancy; the fear of sexual abuse and concern about the efficacy of other contraceptive alternatives: Patterson-Keels et al. "Family Views on Sterilisation for their Mentally Retarded Children" (1994) 39(9) Journal of Reproductive Medicine, 701-706. The Department of Mental Handicap at the University of Nottingham found that events that might prompt consideration of sterilisation for male and female offspring were moving away from home; displaying an interest in the opposite sex; having a steady relationship with a member of the opposite sex; or experiencing difficulties with menstruation. Only 7% indicated that an unwanted offspring conceived by their children would lead them to consider sterilisation: Bambrick and Roberts, "The Sterilisation of People with a Mental Handicap: The Views of Parents" (1991) 35 Journal of Mental Deficiency Research, 353-363. Similarly, sterilisation as a contraceptive regime for people with learning disabilities was regarded favourably by the majority of health and social care and legal personnel in a study conducted by the University of Indiana: Brantlinger, "Professionals' Attitudes towards the Sterilisation of People with Disabilities" (1992) 17(1) Journal of the Association of Persons with Severe Handicaps, 4-18
6. The Department of Obstetrics and Gynecology at the University of Michigan found that the overriding concern of parents was the fear of pregnancy for their daughters, although many parents were also concerned about managing their daughters' menstrual cycle. The main reasons for considering sterilisation as a suitable contraceptive regime were: the fear of pregnancy; the fear of sexual abuse and concern about the efficacy of other contraceptive alternatives: Patterson-Keels et al. "Family Views on Sterilisation for their Mentally Retarded Children" (1994) 39(9) Journal of Reproductive Medicine, 701-706. The Department of Mental Handicap at the University of Nottingham found that events that might prompt consideration of sterilisation for male and female offspring were moving away from home; displaying an interest in the opposite sex; having a steady relationship with a member of the opposite sex; or experiencing difficulties with menstruation. Only 7% indicated that an unwanted offspring conceived by their children would lead them to consider sterilisation: Bambrick and Roberts, "The Sterilisation of People with a Mental Handicap: The Views of Parents" (1991) 35 Journal of Mental Deficiency Research, 353-363. Similarly, sterilisation as a contraceptive regime for people with learning disabilities was regarded favourably by the majority of health and social care and legal personnel in a study conducted by the University of Indiana: Brantlinger, "Professionals' Attitudes towards the Sterilisation of People with Disabilities" (1992) 17(1) Journal of the Association of Persons with Severe Handicaps, 4-18
7. The Department of Obstetrics and Gynecology at the University of Michigan found that the overriding concern of parents was the fear of pregnancy for their daughters, although many parents were also concerned about managing their daughters' menstrual cycle. The main reasons for considering sterilisation as a suitable contraceptive regime were: the fear of pregnancy; the fear of sexual abuse and concern about the efficacy of other contraceptive alternatives: Patterson-Keels et al. "Family Views on Sterilisation for their Mentally Retarded Children" (1994) 39(9) Journal of Reproductive Medicine, 701-706. The Department of Mental Handicap at the University of Nottingham found that events that might prompt consideration of sterilisation for male and female offspring were moving away from home; displaying an interest in the opposite sex; having a steady relationship with a member of the opposite sex; or experiencing difficulties with menstruation. Only 7% indicated that an unwanted offspring conceived by their children would lead them to consider sterilisation: Bambrick and Roberts, "The Sterilisation of People with a Mental Handicap: The Views of Parents" (1991) 35 Journal of Mental Deficiency Research, 353-363. Similarly, sterilisation as a contraceptive regime for people with learning disabilities was regarded favourably by the majority of health and social care and legal personnel in a study conducted by the University of Indiana: Brantlinger, "Professionals' Attitudes towards the Sterilisation of People with Disabilities" (1992) 17(1) Journal of the Association of Persons with Severe Handicaps, 4-18
8. Note that although evidence has been accepted by the High Court that sterilisation by occlusion of the fallopian tubes has a chance of reversibility of 95% in Re P (supra n 2), doubt has been cast on the validity of this estimate. Furthermore, it is highly doubtful that such a procedure would ever be reversed once it has been performed on a woman with a learning disability: M Brazier, Medicine, Patients and the Law, 1992, 390-391.
9. See, for example: Secretary, Department of Health and Community Services (NT) v JWB and SMB (1992) 66 AJLR 300; Re Marion (No 2) (1994) FLC 92-448; L and GM v MM Respondents and Director-General Department of Family Services and Aboriginal and Islander Affairs (1994) FLC 92 - 449; PvP 3 May 1995, Appeal No. EA 85, Family Court of Australia.
10. For a discussion of the English Law test(s) of capacity and proposals for its reform, see: Bartlett, "The Consequences of Incapacity" [1997] 4 Web J.C.L.I; Parkin, "Where Now on Mental Incapacity" [1996] 2 Web J.C.L.I; Wilson, "The Law Commission's Report on Mental Incapacity: Medically Vulnerable Adults or Politically Vulnerable Law?" (1997) 4(3) Med L. Rev., 227; Manthorpe, "Mental Incapacity: Report by the Law Commission" (1995) 17(3) J.S.W.F.L., 383-386; Jones and Keywood, "Assessing the Patient's Competence to Consent to Medical Treatment" (1996) 2 Med. L. Int., 107; Gunn, "The Meaning of Mental Incapacity" (1994) 2 Med. L. Rev., 8.
11. For a discussion of the English Law test(s) of capacity and proposals for its reform, see: Bartlett, "The Consequences of Incapacity" [1997] 4 Web J.C.L.I; Parkin, "Where Now on Mental Incapacity" [1996] 2 Web J.C.L.I; Wilson, "The Law Commission's Report on Mental Incapacity: Medically Vulnerable Adults or Politically Vulnerable Law?" (1997) 4(3) Med L. Rev., 227; Manthorpe, "Mental Incapacity: Report by the Law Commission" (1995) 17(3) J.S.W.F.L., 383-386; Jones and Keywood, "Assessing the Patient's Competence to Consent to Medical Treatment" (1996) 2 Med. L. Int., 107; Gunn, "The Meaning of Mental Incapacity" (1994) 2 Med. L. Rev., 8.
12. For a discussion of the English Law test(s) of capacity and proposals for its reform, see: Bartlett, "The Consequences of Incapacity" [1997] 4 Web J.C.L.I; Parkin, "Where Now on Mental Incapacity" [1996] 2 Web J.C.L.I; Wilson, "The Law Commission's Report on Mental Incapacity: Medically Vulnerable Adults or Politically Vulnerable Law?" (1997) 4(3) Med L. Rev., 227; Manthorpe, "Mental Incapacity: Report by the Law Commission" (1995) 17(3) J.S.W.F.L., 383-386; Jones and Keywood, "Assessing the Patient's Competence to Consent to Medical Treatment" (1996) 2 Med. L. Int., 107; Gunn, "The Meaning of Mental Incapacity" (1994) 2 Med. L. Rev., 8.
13. For a discussion of the English Law test(s) of capacity and proposals for its reform, see: Bartlett, "The Consequences of Incapacity" [1997] 4 Web J.C.L.I; Parkin, "Where Now on Mental Incapacity" [1996] 2 Web J.C.L.I; Wilson, "The Law Commission's Report on Mental Incapacity: Medically Vulnerable Adults or Politically Vulnerable Law?" (1997) 4(3) Med L. Rev., 227; Manthorpe, "Mental Incapacity: Report by the Law Commission" (1995) 17(3) J.S.W.F.L., 383-386; Jones and Keywood, "Assessing the Patient's Competence to Consent to Medical Treatment" (1996) 2 Med. L. Int., 107; Gunn, "The Meaning of Mental Incapacity" (1994) 2 Med. L. Rev., 8.
14. For a discussion of the English Law test(s) of capacity and proposals for its reform, see: Bartlett, "The Consequences of Incapacity" [1997] 4 Web J.C.L.I; Parkin, "Where Now on Mental Incapacity" [1996] 2 Web J.C.L.I; Wilson, "The Law Commission's Report on Mental Incapacity: Medically Vulnerable Adults or Politically Vulnerable Law?" (1997) 4(3) Med L. Rev., 227; Manthorpe, "Mental Incapacity: Report by the Law Commission" (1995) 17(3) J.S.W.F.L., 383-386; Jones and Keywood, "Assessing the Patient's Competence to Consent to Medical Treatment" (1996) 2 Med. L. Int., 107; Gunn, "The Meaning of Mental Incapacity" (1994) 2 Med. L. Rev., 8.
15. For a discussion of the English Law test(s) of capacity and proposals for its reform, see: Bartlett, "The Consequences of Incapacity" [1997] 4 Web J.C.L.I; Parkin, "Where Now on Mental Incapacity" [1996] 2 Web J.C.L.I; Wilson, "The Law Commission's Report on Mental Incapacity: Medically Vulnerable Adults or Politically Vulnerable Law?" (1997) 4(3) Med L. Rev., 227; Manthorpe, "Mental Incapacity: Report by the Law Commission" (1995) 17(3) J.S.W.F.L., 383-386; Jones and Keywood, "Assessing the Patient's Competence to Consent to Medical Treatment" (1996) 2 Med. L. Int., 107; Gunn, "The Meaning of Mental Incapacity" (1994) 2 Med. L. Rev., 8.
16. Note, for example in Gillick v West Norfolk and Wisbech Area Health Authority [1985] 3 All ER 402, at 409, Lord Fraser favoured a test based on ability to understand information. In Re C (adult: refusal of treatment) [1994] 1 WLR 290, Thorpe J devised a 3-stage test of competence: comprehending and retaining treatment information; believing it; and weighing it in the balance. More recently, the Court of Appeal stated that a person lacks capacity if some impairment of disturbance of mental functioning renders that person unable to make a decision about medical treatment. Such an inability would occur when the patient is unable to retain and comprehend information which is material to the decision, or is unable to use the information and weigh it in the balance: Re MB (medical treatment) [1997] Fam Law 542.
17. For example F, a thirty-six year-old woman was described by the House of Lords as having "...the verbal capacity of a child of two and the general mental capacity of a child of four to five.": F v West Berkshire Health Authority and another (Mental Health Act Commission intervening) [1989], supra n 2, per Lord Brandon.
18. Stefan, "Silencing the Different Voice: Competence, Feminist Theory and Law" (1993) 47 U. Miami L Rev 763.
19. In the case of Re P (supra n 2), notwithstanding the conflicting opinion as to whether P would in time be able to give valid consent to the procedure, the sterilisation was authorised as being in the girl's best interests.
20. See, for example Lee and Morgan, "Sterilisation: Sapping the Strength of the State?" (1988) Jo. Law & Soc. 242.
21. Stefan, ibid. p 766
22. "Disability or disorder is not just something, an unfortunate fact of life, that some people, hopefully other people have. It is dynamic in its dimensions and nature ... Disability is caused in part by non-disabled people. It is not just something real experienced by individuals, but something affected by our responses to it": Carson, "Disabling Progress: The Law Commission's Proposals on Mentally Incapacitated Adults' Decision-Making" [1994] JSWFL 304, at 309.
23. Supra n 2.
24. In addition, we should be equally concerned that some men and women with learning disabilities have been encouraged to agree to sterilisation when their understanding of the procedure is questionable. The woman who told fact-finders at the National Development Team that she had been sterilised "so I can go swimming" clearly did not have an appreciation of the nature of the procedure she had undergone. Likewise the woman who announced: ""I think I can't have babies because I had an operation. You'll have to ask" (NHS Draft Guide for People with Learning Disabilities, Aug 1977, p 12) had not played any meaningful part in the decision to sterilise her. Both of these women had been sterilised with their 'agreement' and without the prior approval of the courts, yet their failure to appreciate the consequences of the procedures they had undergone suggest that they lacked the necessary capacity to consent to sterilisation.
25. See, for example, Ware, "The Development of a Morals and Ethics Curriculum for Students with Severe Learning Difficulties" and Robinson, "Experiences of Sex Education Programmes for Adults who are Intellectually Handicapped" in A Craft (ed), Mental Handicap and Sexuality: Issues and Perspectives, 1987.
26. See, for example, Ware, "The Development of a Morals and Ethics Curriculum for Students with Severe Learning Difficulties" and Robinson, "Experiences of Sex Education Programmes for Adults who are Intellectually Handicapped" in A Craft (ed), Mental Handicap and Sexuality: Issues and Perspectives, 1987.
27. Children Act 1989, sl(1).
28. Re D supra n 2. For a discussion of the exercise of the High Court's inherent jurisdiction see: P. M. Bromley and N. V. Lowe, Bromley's Family Law, 8th ed., 1992, p 479.
29. Neither Lord Templeman's dicta in Re B (a minor) (wardship: sterilisation) supra n 2, , nor the Official Solicitor's Practice Note ([1996] 2 FLR 111), both of which state that applications for sterilisations will in virtually all cases require the prior authorization of the High Court, are legally binding. Note also that the court can confirm whether sterilisation is in a minor's best interests following an application for a specific issue order, Re HG (Specific Issue Order: Sterilisation) supra n 2, though the Practice Note discourages this.
30. F v West Berkshire Health Authority and another (Mental Health Act Commission Intervening), supra n 2, at 552, HL, per Lord Brandon.
31. Mental Health Act 1983, s 8 (1) .
32. Re F, supra n 2, at 551c, per Lord Brandon.
33. Ibid.
34. F v West Berkshire Health Authority, supra n 2, at 560e, per Lord Griffiths.
35. (1957) I W.L.R. 583.
36. Sidaway v Bethlem Royal Hospital Governors and others, [1985] I All ER 643, per Lord Bridge and Lord Keith. More recently and more forcefully, see Bolitho v City and Hackney Health Authority, [1997] 4 All ER 771, HL.
37. Note Lord Goff s admission that there is a "high degree of likelihood that [the opinions of the doctors] will be accepted", F v West Berkshire, supra n 2, at 569c.
38. Brazier, "Down the Slippery Slope" (1990) 6 Prof Neg 25.
39. Morgan, "F v West Berkshire Health Authority", (1990) Jo Law & Soc 204, at 208.
40. Shaw ,"Sterilisation of Mentally Handicapped People: Judges Rule OK?", (1990) 53 MLR 91, at 104.
41. Re L, supra n 2.
42. 40% of the patients referred to the gynaecological care clinic at the University of Michigan had either been abused or were suspected victims of abuse. Patterson-Keels, supra n 5, 704.
43. Re W, supra n 2, 382.
44. Supra, n 7, para. 52.
45. See, for example: Cambridge and McCarthy, "Developing and Implementing Sexuality Policy for a Learning Disability Provider Service", (1997) Health and Social Care in the Community 5(4), p 227-326. See also, Stein and Brown (eds), But Now They've Got a Voice: A Tape About Sexual Abuse For Service Users Made by Service Users, 1996; A Nightmare that I Thought Would Never End: A Tape About Sexual Abuse For Staff Made by Service Users, 1996.; Walsall MBC, No Means No: A Pack Produced By Women With Learning Difficulties For Women With Learning Difficulties.
46. See, for example: Cambridge and McCarthy, "Developing and Implementing Sexuality Policy for a Learning Disability Provider Service", (1997) Health and Social Care in the Community 5(4), p 227-326. See also, Stein and Brown (eds), But Now They've Got a Voice: A Tape About Sexual Abuse For Service Users Made by Service Users, 1996; A Nightmare that I Thought Would Never End: A Tape About Sexual Abuse For Staff Made by Service Users, 1996.; Walsall MBC, No Means No: A Pack Produced By Women With Learning Difficulties For Women With Learning Difficulties.
47. See, for example: Cambridge and McCarthy, "Developing and Implementing Sexuality Policy for a Learning Disability Provider Service", (1997) Health and Social Care in the Community 5(4), p 227-326. See also, Stein and Brown (eds), But Now They've Got a Voice: A Tape About Sexual Abuse For Service Users Made by Service Users, 1996; A Nightmare that I Thought Would Never End: A Tape About Sexual Abuse For Staff Made by Service Users, 1996.; Walsall MBC, No Means No: A Pack Produced By Women With Learning Difficulties For Women With Learning Difficulties.
48. See, for example: Cambridge and McCarthy, "Developing and Implementing Sexuality Policy for a Learning Disability Provider Service", (1997) Health and Social Care in the Community 5(4), p 227-326. See also, Stein and Brown (eds), But Now They've Got a Voice: A Tape About Sexual Abuse For Service Users Made by Service Users, 1996; A Nightmare that I Thought Would Never End: A Tape About Sexual Abuse For Staff Made by Service Users, 1996.; Walsall MBC, No Means No: A Pack Produced By Women With Learning Difficulties For Women With Learning Difficulties.
49. Re E, supra n 2; Re GF supra n 2.
50. Supra n 2.
51. "The vast majority of requests for sterilization have come to the clinic from parents of children with mental retardation who still live at home, and almost all mentioned menstrual hygiene with sterilization as a single problem to be solved by hysterectomy", Patterson-Keels, supra n 5, p704.
52. For example Re W (mental patient) (sterilisation), supra n 2. There has been only one case where a High Court judge has refused to authorise to sterilisation of an adult woman with a learning disability: Re LC (Medical Treatment: Sterilisation), supra n 2. In determining LC's best interests a range of factors were thought to be relevant that went beyond the consideration of clinical benefits of sterilisation as opposed to other forms of contraception: the risk of sexual abuse that would not be eradicated by sterilisation; LC's new living arrangements, which would ensure her personal safety; and the status of disabled people in society. In determining that it would not be LC's best interests to undergo a sterilisation, Thorpe J. did not concluded that the body of professional opinion in favour of sterilisation was irresponsible or unreasonable. Indeed, he stated that: "[w]itness after witness has confirmed that the decision in this case is very finely balanced and the quality of professional contributions in this case of indicative of the seriousness of the decision to be taken". This approach is difficult to reconcile with the best interests test as enunciated by the House of Lords in Re F (supra n 2). Viewing the best interests of the incompetent adult patient through the eyes of 'Bolam' means that it will not be unlawful to sterilise an adult woman with a learning disability if the decision to sterilise is supported by a responsible body of professional opinion. Clearly such a body existed in the case of Re LC, yet the operation was held to be contrary to the woman's best interests. The case of LC clearly demonstrates the uneasy alliance of the Best Interests test and the Bolam principle.
53. For example Re P, supra n 2, 192.
54. Department of Health v J.W.B, and S.M.B.; L and G.M. v M.M. and Director-General Department of Family Services and Aboriginal and Islander Affairs, (1994), supra n 7. See also Cica, "Sterilising the Intellectually Disabled: the Approach of the High Court of Australia in Department of Health v JWB and SMB" (1993) 1 Med. L. Rev., 186-231; Whitting, "Medical Decision-Making for the Incompetent" (1996) J. Law & Med., 377-399; Peterson, "Private Decisions and Public Scrutiny: Sterilisation and Minors in Australia and England" in S McLean (ed), Contemporary Issues in Law, Medicine and Ethics, 1996, 57-77.
55. Department of Health v J.W.B, and S.M.B.; L and G.M. v M.M. and Director-General Department of Family Services and Aboriginal and Islander Affairs, (1994), supra n 7. See also Cica, "Sterilising the Intellectually Disabled: the Approach of the High Court of Australia in Department of Health v JWB and SMB" (1993) 1 Med. L. Rev., 186-231; Whitting, "Medical Decision-Making for the Incompetent" (1996) J. Law & Med., 377-399; Peterson, "Private Decisions and Public Scrutiny: Sterilisation and Minors in Australia and England" in S McLean (ed), Contemporary Issues in Law, Medicine and Ethics, 1996, 57-77.
56. Department of Health v J.W.B, and S.M.B.; L and G.M. v M.M. and Director-General Department of Family Services and Aboriginal and Islander Affairs, (1994), supra n 7. See also Cica, "Sterilising the Intellectually Disabled: the Approach of the High Court of Australia in Department of Health v JWB and SMB" (1993) 1 Med. L. Rev., 186-231; Whitting, "Medical Decision-Making for the Incompetent" (1996) J. Law & Med., 377-399; Peterson, "Private Decisions and Public Scrutiny: Sterilisation and Minors in Australia and England" in S McLean (ed), Contemporary Issues in Law, Medicine and Ethics, 1996, 57-77.
57. Under the Family Law Act 1975 and Family Law Amendment Act 1983.
58. Note that decisions in relation to mentally incapacitated adults are authorised by virtue of the courts' guardianship powers, established by statute, e.g. Guardianship Act 1985 (NSW) and Adult Guardianship Act 1988. For an explanation of the relationship between the courts' inherent parens patriae jurisdiction and state legislation, see P v P (1994) 120 ALR 545.
59. Note for example the guidelines laid down by Nicholson CJ in Re Marion (2) supra n 7.
60. L and G.M. v M.M. and Director-General Department of Family Services and Aboriginal and Islander Affairs, supra n 7.
61. Supra n 7, para. 49-75.
62. Supra n 7, para. 106.
63. Law Com. No. 231, 1995, HMSO
64. Who Decides? Making Decisions on Behalf of Mentally Incapacitated Adults, 1997, HMSO.
65. See Campbell, "Dependency Revisited: The Limits of Autonomy in Medical Ethics" in Brazier and Lobjoit (eds), Protecting the Vulnerable: Autonomy and Consent in Health Care, 1991, 101.
66. Brazier, "Competent, Consent and Proxy Consents", in Brazier and Lobjoit (eds). ibid., 46.