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Asset or burden? Informed consent and the role of the family: law and practice

Published online by Cambridge University Press:  02 January 2018

Roy Gilbar
Roy Gilbar*
Affiliation:
School of Law, University of Leicester
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Abstract

The paper discusses the issue of family involvement in the process of obtaining consent to treatment. Legally, doctors have a duty to inform the patient, and the patient has a right to be informed before making a decision. In this context, however, there is no requirement to involve relatives or to take into account their interests or requests. Yet, findings from in-depth interviews with NHS general practitioners presented in the paper indicate that in reality relatives have a substantial impact on the process of informed consent. Their presence may lead the doctor to provide more information to the patient and help the patient better understand the information conveyed by the doctor. Ultimately, the relatives' involvement enhances the patient's ability to make an informed decision, even though in some cases – when the relative is dominant – this may have a negative impact on the channel of communication between doctor and patient. These findings reflect a relational approach to patient autonomy. They lead the author to suggest that the current doctor-patient partnership model in English medical law would benefit by the addition of relatives as an integral component of the decision making team. Such a significant shift in the legal approach requires changes in the type of information conveyed by the doctor to the patient; in the means to increase the patient's understanding; and lastly at the point when decisions are actually made.

Type
Research Article
Information
Legal Studies , Volume 32 , Issue 4 , December 2012 , pp. 525 - 550
Copyright
Copyright © Society of Legal Scholars 2012

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References

1. Beauchamp, T and Childress, J Principles of Medical Ethics (New York: OUP, 6th edn, 2009)Google Scholar.

2. ‘Family’ in this paper is not limited to blood relations or legal ties such as marriage or adoption. A relative may be the person with whom the patient feels emotionally close. For a detailed discussion, see Gilbar, R The Status of the Family in Law and Bioethics: The Genetic Context (Aldershot: Ashgate, 2005)Google Scholar ch 2.

3. I will analyse family involvement when patients lose their mental capacity in a subsequent paper.

4. Re T (adult: refusal of medical treatment) [1992] 4 All ER 649.

5. Gilbar, R ‘Family involvement, independence and patient autonomy in practice’ (2011) 19 (2) Med L Rev 192 Google Scholar.

6. Roter, D and Hall, J Doctors Talking with Patients/Patients Talking with Doctors (Westport, CT: Praeger, 2nd edn, 2006)Google Scholar.

7. Charles, C et al ‘Shared decision-making in the medical encounter: what does it mean (or it takes at least two to Tango)’ (1997) 44 (5) Social Science & Medicine 681 Google Scholar.

8. Rapely, T ‘Distributed decision making: the anatomy of decisions in-action’ (2008) 30 (3) Sociology of Health & Illness 429 Google Scholar.

9. Clinicians are hospital doctors, GPs, nurses, psychiatrists, psychologists and occupational therapists.

10. Jackson, E Medical Law: Text, Cases and Materials (Oxford: OUP, 2nd edn, 2010)Google Scholar ch 4.

11. The focus in this paper is on general practitioners, due to the familial approach underlying their medical speciality. However, whether their attitude to family involvement is significantly different from the attitude of clinicians in other specialties is not examined. This must await empirical research.

12. Individual autonomy means that patients act autonomously when they have the mental capacity to make decisions without the controlling influences of others. See Beauchamp and Childress, above n 1, p 132.

13. At the heart of relational autonomy is the notion that significant others have an influence on, and are influenced by, the decisions made by the individual, since the individual is first and foremost a social being with an important network of people with whom s/he has a close relationship, forming part of his/her identity. For a comprehensive account, see Gilbar, above n 5, pt 3(b).

14. In the context of patients' independence, Hardwig believes that relatives should have an equal say when important decisions about treatment are made. See Hardwig, J ‘What about the family?’ (1990) 20 Hastings Center Report 5 Google Scholar. Others, such as Hilde and James Lindemann-Nelson, believe that ultimately patients' interests should be preferred when they conflict with those of the relatives. See Lindemann-Nelson, H and Lindemann-Nelson, J The Patient in the Family (New York: Routledge, 1995)Google Scholar. See also Ho, A ‘Relational autonomy or undue pressure? Family's role in medical decision making’ (2008) 22 Scandinavian Journal of Caring Sciences 128 Google Scholar; A Donchin ‘Autonomy and interdependence: quandaries in genetic decision making’ in Mackenzie, C and Stoljar, N Relational Autonomy: Feminist Perspectives on Autonomy, Agency and the Social Self (Oxford: OUP, 2000)Google Scholar p 236.

15. See Beauchamp and Childress, above n 1, pp 118–121.

16. D Lock ‘Consent to treatment: the competent patient’ in Grubb, A, Laing, J and McHale, J (eds) Principles of Medical Law (Oxford: OUP, 3rd edn, 2010)Google Scholar pp 439–472; Herring, J Medical Law and Ethics (Oxford: OUP, 3rd edn, 2010)Google ScholarPubMed pp 164–167.

17. McLean, S Autonomy, Consent and the Law (Oxon: Routledge-Cavendish, 2010)Google Scholar.

18. Manson, N and O'Neill, O Rethinking Informed Consent in Bioethics (Cambridge: CUP, 2007)CrossRefGoogle Scholar p 41.

19. Ibid, and also at pp 47–48.

20. Mason, JK and Laurie, JT Law and Medical Ethics (Oxford: OUP, 8th edn, 2011)Google Scholar p 110.

21. See Beauchamp and Childress, above n 1, p 127.

22. Maclean, A Autonomy, Informed Consent and Medical Law: A Relational Challenge (Cambridge: CUP, 2009)CrossRefGoogle Scholar p 232.

23. Ibid, p 244.

24. Mason and Laurie, above n 20, p 111.

25. Edwards, A and Elwyn, G (eds) Shared Decision Making in Health Care (Oxford: OUP, 2nd edn, 2009)Google ScholarPubMed.

26. See Charles, above n 7.

27. See Maclean, above n 22, p 247; McLean, above n 17, pp 63–64.

28. See Maclean, above n 22, p 243.

29. Ibid.

30. See Beauchamp and Childress, above n 1, p 132.

31. For an inclusive discussion about truth-telling, see ibid, pp 288–294.

32. Ibid, p 293, and also Kuczewski, M and McCruden, P ‘Informed consent: Does it take a village? The problem of culture and truth telling’ (2001) 10 Cambridge Quarterly of Healthcare Ethics 34 Google Scholar.

33. Harm to the patient may include making irrational decisions which endanger his/her life, and experiencing depression, anxiety or distress.

34. See Beauchamp and Childress, above n 1, p 124; also McLean, above n 17, pp 84–86.

35. See Maclean, above n 22, p 206.

36. M Murtagh ‘Decision-making, power, and the doctor-patient relationship’ in Edwards and Elwyn, above n 25, pp 79–84.

37. M Clayman and G Makoul ‘Conceptual variation and iteration in shared decision-making: the need for clarity’ in Edwards and Elwyn, above n 25, pp 109–116.

38. One exception is the recent account provided by S Mclean, above n 17, who attempts to reconcile the individual and relational approach to autonomy and consent.

39. Kuczewski, M ‘Reconceiving the family: the process of consent in medical decisionmaking’ (1996) 26 (2) Hastings Center Report 30 Google Scholar.

40. Coggon, J ‘Varied and principled understandings of autonomy in English law: justifiable inconsistency or blinkered moralism’ (2007) 15 Health Care Analysis 235 Google Scholar.

41. Sidaway v Board of Governors of the Bethlem Royal Hospital [1985] AC 871; Pearce v United Bristol Healthcare NHS Trust [1999] PIQR 53; and to a certain degree Chester v Afshar [2004] UKHL 41.

42. See Pearce, ibid.

43. See McLean, above n 17, pp 96–97.

44. [1994] 5 Medical Law Report 334. It was held that patients must understand ‘in broad terms the nature of the procedure which is intended’.

45. Al Hamwi v Johnston [2005] EWHC 206.

46. Ibid. For a critique, see Miola, J Medical Ethics and Medical Law: A Symbiotic Relationship (Oxford: Hart, 2007)Google Scholar pp 70–72.

47. See Sidaway, above n 41, pp 885–886.

48. A similar view was expressed by Lord Hope in Chester v Afshar [2004] UKHL 41, para 86.

49. General Medical Council Consent: Doctors and Patients Making Decisions Together (London: General Medical Council, 2008)Google Scholar.

50. Ibid. Para 14 reads: ‘If, after discussion, a patient still does not want to know in detail about their condition or the treatment, you should respect their wishes, as far as possible. But you must still give them the information they need in order to give their consent to a proposed investigation or treatment’. See also para 15: ‘If a patient insists that they do not want even this basic information, you must explain the potential consequences of them not having it, particularly if it might mean that their consent is not valid’.

51. See GMC on consent, above n 49, para 16.

52. However, doctors can apply their professional discretion and not inform the patient if they believe it will cause the patient harm. See Sidaway, above n 41, pp 889–890.

53. See GMC, above n 49, paras 41–42.

54. Ibid, para 13.

55. Doherty, W and Baird, M ‘Developmental levels in family-centred medical care’ (1983) 18 (3) Family Medicine 153 Google Scholar; McWhinney, I A Textbook of Family Medicine (Oxford: OUP, 2nd edn, 1997)Google ScholarPubMed.

56. Royal College of General Practioners Good Medical Practice (London: Royal College of General Practitioners, 2008)Google ScholarPubMed para 29.

57. Arguably, the RCGP merely directs the GPs to consider other alternatives and not rely too heavily on family members. However, the RCGP's assumption is that reliance on family members may challenge the patient's right to dignity and privacy, an assumption which might not be shared by the patients themselves, who may welcome the relatives' assistance.

58. Department of Health Consent – What You Have a Right to Expect: A Guide for Relatives and Carers (London: DoH, 2001)Google Scholar; Department of Health, Consent – What You Have a Right to Expect: A Guide for Adults (London: DoH, 2001)Google Scholar.

59. See Hardwig, above n 14.

60. See the Lindemann-Nelsons, above n 14.

61. See McWhinney, above n 55, p 235.

62. See Clayman and Makoul, above n 37.

63. Almost all the empirical studies presented in this part deal with long-term illnesses (mainly cancer).

64. See Charles, above n 7, p 685.

65. J Ohlen ‘The influence of significant others in complementary and alternative medicine decisions by cancer patients' (2006) 63 Social Science & Medicine 1625.

66. The findings in this paper derive from interviews with clinicians. Therefore, I will present previous studies which examined clinicians' views.

67. Toon, PD and Southgate, LJ ‘The doctor, the patient and the relative: an exploratory survey of doctor-relative relationship’ (1987) 4 (3) Family Practice 207 Google Scholar.

68. Speice, J et al ‘Involving family members in cancer care: focus group considerations of patients and oncological providers’ (2000) 9 Psycho-Oncology 101 Google Scholar.

69. A Beisecker and P Moore ‘Oncologists’ perceptions of the effects of cancer patients' companions on physician-patient interactions' (1994) 12 Journal of Psychosocial Oncology 23.

70. Hasselkus, B ‘Three-track care: older patient, family member, and physician in the medical visit’ (1994) 8(3) Journal of Aging Studies 292 Google Scholar.

71. See McLean, above n 17, p 34.

72. Aslam, F, Aftab, O and Janjua, N ‘Medical decision making: the family-doctor-patient triad’ (2005) 2 (6) PLoS Medicine e129 Google Scholar.

73. Candib, L ‘Truth telling and advance planning at the end of life: problems with autonomy in a multicultural world’ (2002) 20 Families, Systems & Health 213 Google Scholar. See also Launer, J ‘Breaking bad news’ (2005) 98 (5) QJM: An International Journal of Medicine 385 Google Scholar, for a view expressing doubt as to whether telling the patients the truth is always the right thing to do.

74. McCabe, M, Wood, W and Goldberg, R ‘When the family requests withholding the diagnosis: who owns the truth?’ (2010) 6 (2) Journal of Oncology Practice 94 Google Scholar.

75. Baider, L and Surbone, A ‘Cancer and the family: the silent word of truth’ (2010) 28 (7) Journal of Clinical Oncology 1269 Google Scholar.

76. Surbone, A ‘Telling the truth to patients with cancer: what is the truth?’ (2006) 7 Lancet Oncology 944 Google Scholar.

77. See Jackson, above n 10, ch 4.

78. Jones, M Medical Negligence (London: Sweet and Maxwell, 4th edn, 2008)Google Scholar ch 7.

79. See the discussion about therapeutic privilege in Sidaway, above n 41, pp 889–890.

80. See McWhinney, above n 55.

81. See the findings presented below.

82. The recruitment process in the NHS is described in Gilbar, above n 5.

83. Strauss, A and Corbin, J Basics of Qualitative Research (London: Sage, 2nd edn, 1998)Google Scholar; Charmaz, K Constructing Grounded Theory (London: Sage, 2006)Google Scholar.

84. The impact of gender on the perception of autonomy was not examined, partly in light of the small size of the sample. By and large, though, a difference in the respondents' views based on gender was not detected. There were male GPs who adopted a relational approach and female GPs who adopted an individualistic approach. Yet, this aspect merits a separate empirical investigation.

85. This view accords with both the GMC guidelines, above n 49, and the RCGP guidelines, above n 56.

86. See Gilbar, above n 5.

87. Mystakidou, K et al ‘Cancer information disclosure in different cultural contexts’ (2004) 12 Supportive Care in Cancer 147 Google Scholar.

88. Morin was one of the GPs in the group who treated patients from a South Asian background.

89. Minuchin, S Families and Family Therapy (Cambridge, MA: Harvard University Press, 1974)Google ScholarPubMed pp 47–48.

90. Curry, H ‘The family as our patient’ (1974) 1(1) Journal of Family Practice 70 Google Scholar.

91. Ben actually reiterated the GMC's opening recommendations word for word. See GMC, above n 49.

92. Morin's view is similar to that of Hardwig, above n 14.

93. See above n 14.

94. See Re T, above n 4; GMC guidelines, above n 49, paras 41–42.

95. See Kuczewski, above n 39.

96. See Sidaway, above n 41, pp 889–890.

97. Epstein, R, Korones, D and Quil, T ‘Withholding information from patients – when less is more’ (2010) 362(5) New England Journal of Medicine 380 Google Scholar.

98. R Gilbar ‘Medical confidentiality and communication with the patient's relatives: legal and practical perspectives’ (forthcoming).

99. This assumes that confidentiality is not an issue and that the relatives do not try to promote their personal interests at the patient's expense.

100. Notably, although doctors currently have a substantial influence on the patient's decision, they too do not have the final say. The development of this model generally, and the exact legal role of the relatives particularly, will be discussed elsewhere.

101. Such a change of perception can begin by redrafting para 3 of the GMC guidelines which currently states that decision making in healthcare is based on a partnership between the clinician and the patient. The relatives should be added to this formulation of the partnership model.

102. See Gilbar, above n 5.

103. See GMC, above n 49, para 9.

104. An addition can be made to para 11 of the GMC guidelines, which currently states that ‘the clinician should check whether patients have understood the information they have been given, and whether or not they would like more information before making a decision’. The following can be added: You can try to ensure the patient's understanding by involving the relatives, if present in the consultation. Similarly, para 12 should state: You must answer patients' and relatives' questions honestly and, as far as is practical, answer as fully as they wish.

105. The suggested change can be made in para 7 of the GMC guidelines, which currently states that ‘the exchange of information between doctor and patient is central to good decision-making’. Instead, the paragraph should state that the exchange of information between doctor, patient and relatives is central to good decision making.