Family involvement, independence, and patient autonomy in practice

Medical Law Review

Volumn 19, Issue 2, 2011, Pages 192-234

  Gilbar, Roy ^a  

^a QUEEN MARY UNIVERSITY OF LONDON   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

ADULT; ARTICLE; DECISION MAKING; DOCTOR PATIENT RELATION; ETHICS; FAMILY RELATION; HUMAN; HUMAN RELATION; INFORMED CONSENT; INTERVIEW; LEGAL ASPECT; MENTAL CAPACITY; PATIENT RIGHT; PERSONAL AUTONOMY; QUALITATIVE RESEARCH; SOCIAL SUPPORT; UNITED KINGDOM;

ADULT; DECISION MAKING; ENGLAND; FAMILY RELATIONS; HUMANS; INFORMED CONSENT; INTERVIEWS AS TOPIC; MENTAL COMPETENCY; PATIENT RIGHTS; PERSONAL AUTONOMY; PHYSICIAN-PATIENT RELATIONS; PROFESSIONAL-FAMILY RELATIONS; QUALITATIVE RESEARCH; SOCIAL SUPPORT;

EID: 79957790618     PISSN: 09670742     EISSN: 14643790     Source Type: Journal    
DOI: 10.1093/medlaw/fwr008     Document Type: Article

References (147)

1. The terms relatives and family members are used interchangeably in this article
2. F Legare and D Stacey, 'Shared Decision-Making: The Implications for Health Care Teams and Practice' in A Edwards and G Elwyn (trans), Shared Decision-Making in Health Care (2nd edn OUP, Oxford 2009), 23-35
3. C Charles and others, 'Shared Decision-Making in the Medical Encounter: What Does it Mean (Or it takes at least two to Tango)' (1997) 44 Soc Sci Med 681
4. R Rapely, 'Distributed Decision Making: The Anatomy of Decisions In-Action' (2008) 30 Soc Health Illness 429, 433
5. C Charles and others, 'Decision-Making in the Physician-Patient Encounter: Revisiting the Shared Treatment Decision-Making Model' (1999) 49 Soc Sci Med 651
6. S Shumaker and A Brownell, 'Toward a Theory of Social Support: Closing Conceptual Gaps' (1984) 40 J Soc Issues 11, 17
7. JR Bloom and others, 'Sources of Support and the Physical and Mental Wellbeing of Young Women with Breast Cancer' (2001) 53 Soc Sci Med 1513
8. Charles (n 3) 685
9. Charles (n 3)
10. JK Mason and GT Laurie, Mason&McCall-Smith's Lawand Medical Ethics (8th edn OUP, Oxford 2011) 6-9
11. N Manson and O O'Neill, Rethinking Informed Consent in Bioethics (CUP, Cambridge 2007)
12. A Edwards and G Elwyn (trans), Shared Decision-Making in Health Care (2nd edn OUP, Oxford 2009)
13. T Beauchamp and J Childress, Principles of Biomedical Ethics (6th edn OUP, New York 2009), Ch 4
14. G Dworkin, The Theory and Practice of Autonomy (CUP, Cambridge 1988)
15. Arguably, information is not obligatory in exercising autonomy. This argument is expressed in the context of the right not to know genetic information.
16. See, for example, T Takala, 'The Right to Genetic Ignorance Confirmed' (1999) 13 Bioethics 288
17. J Herring, Medical Law and Ethics (2nd edn OUP, Oxford 2008)
18. E Jackson, Medical Law (2nd edn OUP, Oxford 2010)
19. Beauchamp and Childress (n 13) 132
20. S Mclean, Autonomy, Consent and the Law (Routledge-Cavendish, Oxon 2010) 51-54
21. I Berlin, Four Essays on Liberty, (OUP, Oxford 1969), 118-172, 131
22. T Beauchamp and J Childress, Principles of Biomedical Ethics (5th edn OUP, New York 2001) 65, 104
23. In this most recent version of their book, the authors do not mention Berlin explicitly but nevertheless rely on his theory as well as on Kant's: Beauchamp and Childress, (13) 104
24. For Kantian perceptions of autonomy that are contested, see O O'Neill, Autonomy and Trust in Bioethics (CUP, Cambridge 2002)
25. B Secker, 'The Appearance of Kant's Deontology in Contemporary Kantianism: Concepts of Patient Autonomy in Bioethics' (1999) 24 Journal of Medicine and Philosophy 43
26. J Harris, 'Consent and End of Life Decisions' (2003) 29 Journal of Medical Ethics 10, 11
27. See also G Laurie, Genetic Privacy: A Challenge to Medico-Legal Norms (CUP, Cambridge 2002) who argues that ultimately the individual can choose whether or not to share his or her intimate emotions with others. In Laurie's view, privacy is essential to the moral development of the individual and precedes intimacy.
28. J Nedelsky, 'Reconceiving Autonomy: Sources, Thoughts and Possibilities' (1989) Yale JL Femin 7
29. S Sherwin, 'A Relational Approach to Autonomy in Health Care' in S Sherwin (ed), The Politics of Women Health: Exploring Agency and Autonomy (Temple University Press, Philadelphia 1998) 19-47
30. Callahan D, 'Principlism and communitarianism' (2003) 29 J Med Ethics 287
31. Mclean (n 18)
32. A Tauber, Patient Autonomy and the Ethics of Responsibility (MIT Press, Cambridge, MA 2005)
33. J Herring, 'Where Are the Carers in the Healthcare Law and Ethics' (2007) 27 Legal Stud 51
34. C Mackenzie and N Stoljar, 'Autonomy Refigured' in C Mackenzie and N Stoljar, Relational Autonomy: Feminist Perspectives on Autonomy, Agency and the Social Self (OUP, Oxford 2000) 21
35. Nedelsky (n 21)
36. A Donchin, 'Autonomy and Interdependence: Quandaries in Genetic Decision Making', in Mackenzie and Stoljar, (n 23) 236-58
37. J Hardwig, 'What about the Family?' (1990) 20 Hastings Center Report 5
38. J Lindemann-Nelson, 'Taking Families Seriously' (1992) 22 Hastings Center Report 6
39. J Blustein, 'The Family in Medical Decisionmaking' (1993) 23 Hastings Center Report 6
40. For a more recent account, see E Cassell, 'Unanswered Questions: Bioethics and Human Relationships' (2007) 37 Hastings Center Report 20
41. Hardwig (n 26). Such a situation may arise, for example, when a terminally ill patient wishes to die at home and the relatives prefer that she/he would die in hospital.
42. Hardwig (n 26). Hardwig argues, at p 7 that 'we must build our theory of medical ethics on the presumption of equality: the interests of patients and family members are morally to be weighed equally'.
43. This position led Hardwig to argue that the dying patient has a moral duty to die, or a moral duty not to be a burden on the family
44. See J Hardwig and others, Is There a Duty to Die: And Other Essays in Medical Ethics (Routledge, New York 2000)
45. Hardwig's position was criticised not only by the other contributors to the book but also by M Gunderson, 'Being a Burden: Reflection on Refusing Medical Care' (2004) 34 Hastings Center Report 37
46. The discussion on this topic is beyond the scope of this article
47. H Lindemann-Nelson and J Lindemann-Nelson, The Patient in the Family (Routledge, New York 1995) 114-7
48. Lindemann-Nelson and Lindemann-Nelson (n 30)
49. M Minow, 'Who's the Patient' (1994) 53 Maryland LR 1173 supports the view that the relatives' autonomy should be respected and that compromises should be made in the decision making process
50. Blustein (n 26) 11 agrees with the Lindemann-Nelsons
51. Donchin (n 25) 253
52. Lindemann-Nelson (n 30) 114-116
53. Lindemann-Nelson (n 30) 117
54. A Ho, 'Relational Autonomy or Undue Pressure? Family's Role in Medical Decision-Making' (2008) 22 Scandinavian J Caring Sci 128, 133
55. Ho (n 36)
56. Ho (n 36)
57. For critiques of relational autonomy, see I Hyun, 'Conceptions of Family-Centered Medical Decisionmaking and their Difficulties' (2003) 12 Camb Q Healthcare Ethics 196
58. J Christman, 'Relational Autonomy Liberal Individualism and the Social Constitution of Selves' (2004) Philos Stud 143
59. Mclean (n 18) 27
60. Mclean (n 18) 34
61. This view is supported be C Gauthier, 'The Virtue of Moral Responsibility in Healthcare Decisionmaking' (2002) 11 Camb Q Healthcare Ethics 273
62. Eg C Mills, 'The Ethics of Reproductive Control' (1999) 30 Philos Forum 43, 44, describes this well: 'Of course I should try to influence you, as you should try to influence me
63. To suggest otherwise is to deny the fabric of human interaction within which we are all inevitably and fortunately situated'. Beauchamp and Childress (n 13) at p 103 state that an autonomous action requires 'only a substantial degree of understanding and freedom from constraint, not a full understanding or a complete absence of influence'.
64. Treating the decision in isolation is artificial. As will be shown below, in practice the process of communicating medical information, and the discussion about the decision, are strongly connected to one another.
65. Hardwig (n 26); Lindemann-Nelson (n 26); Blustein (n 26)
66. Charles (n 3); Charles (n 5)
67. The shared decision-making model was first introduced by the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioural Research, Making health care decisions: The Ethical and Legal Implications of Informed Consent in the Patient-Practitioner Relationship (Washington, 1982)
68. This led several sociomedical researchers to develop their own models and interpretations of shared decision-making. However, the model developed by Charles and her colleagues explicitly recognised the role of relatives.
69. See M Clayman and G Makoul, 'Conceptual Variation and Iteration in Shared Decision-Making: The Need for Clarity' in Edwards and Elwyn (n 12) 109-116
70. R Gilbar, The Status of the Family in Law and Bioethics: The Genetic Context (Ashgate, Aldershot 2005)
71. A Maclean, Autonomy, Informed Consent and Medical Law: A Relational Challenge (CUP, Cambridge 2009)
72. Mclean (n 18)
73. See also M Brazier, 'Do No Harm- Do Patients Have Responsibilities Too?' (2006) 65 Camb LJ 397
74. Brazier stresses the patient's moral responsibilities to others but also highlights the difficulties of translating these responsibilities to legal duties
75. British Medical Association, Human Genetics: Choice and Responsibility (OUP, Oxford 1998) 21-22
76. British Medical Association, The Ethics of Caring for Older People (2nd edn Wiley-Blackwell, Chichester 2009)
77. General Medical Council, Consent: Patients and Doctors Making Decisions Together (GMC, London 2008)
78. General Medical Council, Confidentiality (GMC, London 2009)
79. For a comprehensive analysis of this point see Gilbar (n 47) Chaps 3 and 4
80. Gilbar (n 47)
81. Re T (adult: refusal of medical treatment) [1992] 4 All ER 649
82. Re T (n 52) 662
83. R (Jenkins) v HMCoroner for Portsmouth and South East Hampshire [2009] EWHC 3229
84. Jenkins (n 54) 10
85. J Herring, 'Case Comment: The Legal Duties of Carers' (2010) Med L Rev 248, 255
86. Apart from Re T and Jenkins, the courts have examined the influence of family members in cases where the individual's mental capacity was in doubt (learning difficulties), or when s/he suffered from a mental illness. In these cases, the court referred to the statements of the judges in Re T. They examined the influence of the relatives and treated them with suspicion. See: A Local Authority v Mrs A and Mr A [2010] EWHC 1549 (Fam)
87. J Ohlen, 'The Influence of Significant Others in Complementary and Alternative Medicine Decisions by Cancer Patients' (2006) 63 Soc Sci Med 1625
88. Charles (n 3)
89. Clayman and Makoul (n 46)
90. Eg N Arora and C McHorney, 'Patient Preferences for Medical Decision-Making: Who Really Wants to Participate' (2000) 38 Med Care 335
91. N Mendick and others, 'The Ethics of Responsibility and Ownership in Decision-Making about Treatment for Breast Cancer: Triangulation of Consultation with Patient and Surgeon Perspective' (2010) 70 Soc Sci Med 1904
92. K Cox and others, 'Patients' Involvement in Decisions about Medicines: GPs' Perceptions of their Preferences' (2007) 57 Br J f Gen Pract 777
93. Eg O Karnieli-Miller and Z Eizikovits, 'Physician as Partner or Salesman? Shared Decision-Making in Real-Time Encounters' (2009) 69 Soc Sci Med 1
94. D Mazur and others, 'The Role of Doctor's Opinion in Shared Decision Making: What does Shared Decision Making Really Mean when Considering Invasive Medical Procedures?' (2005) 8 Health Expect 97
95. N Hallowell and others, 'Balancing Autonomy and Responsibility: The Ethics of Generating and Disclosing Genetic Information' (2003) 29 J Med Ethics 74
96. N Hallowell and others, 'Communication about Genetic Testing in Families of Male BRCA1/2 Carriers and Non-Carriers: Patterns, Priorities and Problems (2005) 67 Clin Genet 492
97. Eg C Reust and S Mattingly, 'Family Involvement in Medical Decision Making' (1996) 28 Fam Med 39
98. J Benson and N Britten, 'Respecting the Autonomy of Cancer Patients when Talking with Their Families: Qualitative analysis of Semi-Structured Interview with Patients' (1996) 313 BMJ 729
99. See above, footnotes 26-30, and the accompanying text
100. U Boehmer and JA Clark, 'Married Couples' Perspectives on Prostate Cancer Diagnosis and Treatment Decision-Making' (2001) 10 Psycho Oncol 147
101. BA Hilton, 'Family Decision-Making Processes about Early Stage Breast Cancer Treatment' (1994) 4 Can Oncol Nurs J 9
102. Boehmer (n 66)
103. Ohlen (n 58)
104. BJ Davison and others, 'Assessing Information and Decision Preferences of Men with Prostate Cancer and their Partners' (2002) 25 Cancer Nurs 42
105. SJ Srirangam and others, 'Partner's Influence on Patient Preference for Treatment in Early Prostate Cancer (2003) 92 BJU Int 365
106. S Maliski and others, 'From "Death Sentence" to "Good Cancer" : Couples' Transformation of Prostate Cancer Diagnosis' (2002) 51 Nurs Res 391
107. Srirangam (n 71) 366
108. AY Zhang and LA Siminoff, 'The Role of the Family in Treatment Decision Making by Patients with Cancer' (2003) 30 Oncol Nurs Forum 1022
109. R Gilbar and O Gilbar, 'The Medical Decision-Making Process and the Family: The Case of Breast Cancer Patients and Their Husbands' (2009) 23 Bioethics 183
110. C Schafer and others, 'Medical Decision-Making of the Patient in the Context of the Family: Results of a Survey' (2006) 14 Support Care Cancer 952
111. D Penson and others, 'Race and Shared Decision Making among Prostate Cancer Patients, Family Members and Physicians' (2009) 181 (Supp.) J Urol 26.
112. AM Stiggelbout and others, 'How Important is the Opinion of Significant others to Cancer Patients' Adjuvant Chemotherapy Decision-Making' (2007) 15 Support Care Cancer 319
113. E.g., B Hasselkus, 'Three-Track Care: Older Patient, Family Member, and Physician in the Medical Visit' (1994) 8 Journal of Aging Studies 292.
114. A Beisecker and P Moore, 'Oncologists' Perceptions of the Effects of Cancer Patients' Companions on Physician-Patient Interactions' (1994) 12 J Psychosoc Oncol 23
115. A Strauss and J Corbin, Basics of Qualitative Research (2nd edn, Sage, Thousand Oaks 1998)
116. K Charmaz, Constructing Grounded Theory (Sage, London 2006)
117. M Labrecque and others, 'The Impact of Family Presence on the Physician-Cancer Patient Interaction' (1991) 33 Soc Sci Med 1253
118. J Brown and others, 'Roles and Influence of People who Accompany Patients on Visits to the Doctor' (1998) 44 Can Fam Physician 1644
119. L Schilling and others, 'The Third Person in the Room: Frequency, Role and Influence of Companions during Primary Care Medical Encounters' (2002) 51 J Fam Pract 685
120. See note 81 and accompanying text
121. Blustein (n 26)
122. Chester v Afshar [2004] UKHL 41; Jackson (n 16) Ch 4
123. General Medical Council, Consent: Patients and Doctors are Making Decisions Together (GMC, London 2008) section 21
124. British Medical Association, Consent Tool Kit (BMA, December 2009) 13
125. I will discuss the issue of communication of information and informed consent in law in greater detail elsewhere
126. See notes 67-70 and accompanying text
127. Interviews conducted with clinicians as part of the broader study suggest that in particular cases which involve patients from a South Asian background, female patients are under greater familial influence. The findings of the interviews with clinicians will be reported elsewhere.
128. See notes 67-70 and accompanying text
129. Beauchamp and Childress (n 13)
130. Department of Health, Consent - What you Have a Right to Expect: A Guide for Relatives and Carers (Department of Health, London 2001) 4: It may ot be a decision you agree with, but that's not the key test
131. See also: Department of Health, Consent - What you Have a Right to Expect: A Guide for Adults (Department of Health, London 2001) 3-4
132. Department of Health, Good Practice in Consent Implementation Guide: Consent to Examination or Treatment (Department of Health, London 2001) 10
133. GMC Guidelines on Consent (n 85) sections 41-42
134. Boehmer (n 66)
135. Mclean (n 18)
136. J Gabe and others, 'It Takes Three to Tango: A Framework for Understanding Patient Partnership in Paediatric Clinics' (2004) 59 Soc Sci Med 1071
137. Hasselkus (n 79)
138. F Moazam, Families, Patients and Physicians in Medical Decisionmaking: A Pakistani Perspective' (2000) 30 Hastings Center Report 28
139. C Seale, 'Portrayals of Treatment Decision-Making on Popular Breast and Prostate Cancer Websites' (2005) 14 Eur J Cancer Care 171
140. Eg L Candib, 'Truth Telling and Advance Planning at the End of Life: Problems with Autonomy in a Multi-Cultural World' (2002) 20 Fam Syst Health 213
141. G Franke and others, 'A Discourse of Relationships in Bioethics: Patient Autonomy and End-of-Life Decision Making among Elderly Korean Americans' (1998) 12 Med Anthropol Q 403
142. Mclean (n 18)
143. M Parker (ed), Ethics and Community in the Health Care Professions (Routledge, London 1999)
144. The debate about the role of law in society is beyond the scope of this article. Gilbar (n 47) Ch 6.
145. GMC Guidelines on Consent (n 85) section 22
146. Lindemann-Nelson (n 30) 115
147. See also C Levine and C Zuckerman, 'Hands On/hands Off: Why Health Care Professionals Depend on Families but Keep them at Arm's Length' (2000) 28 J L Med Ethics 5