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Rethinking the Approach to Advance Directives

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Advance Directives: Rethinking Regulation, Autonomy & Healthcare Decision-Making

Part of the book series: International Library of Ethics, Law, and the New Medicine ((LIME,volume 76))

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Abstract

The challenges in implementing advance directives called for an understanding of the distinctions between advance decision-making and contemporaneous decision-making. It is clear from the cases that where there is the opportunity to verify the decision-making process, the AD is more likely to be accepted as valid and applicable. Consequently, this warrants an alternative approach in the form of supported decision-making to ADs.

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Notes

  1. 1.

    Re B (adult: refusal of medical treatment) [2002] EWHC 429 (Fam); St George's Healthcare NHS Trust v S [1998] 3 WLR 936 (CA).

  2. 2.

    It is a rare disease which can be fatal, afflicting more women than men with symptoms that are not easily diagnosed: See-Sebastian, H Ester and Robert E Marks “Spinal Cord Intramedullary Cavernoma: A Case Report” (2013) West Virginia Medical Journal at http://www.thefreelibrary.com/Spinal+cord+intramedullary+cavernoma%3A+a+case+report.-a0331687720. Accessed 2 June 2017.

  3. 3.

    Re B (adult: refusal of medical treatment) [2002] EWHC 429 (Fam) at [27].

  4. 4.

    St George's Healthcare NHS Trust v S [1998] 3 WLR 936 (CA); [1998] 3 All ER 673 (CA).

  5. 5.

    HE v A Hospital NHS Trust & AE [2003] EWHC 1017 (Fam).

  6. 6.

    United Nations Convention on the Rights of Persons with Disability; www.futurepolicy.org. Accessed 5 August 2017.

  7. 7.

    Magdalena McGuire “Supported Decision-making forum: Summary report” (Office of the Public Advocate, 24 February 2010) at 4; Office of the Public Advocate Systems Advocacy “A journey towards autonomy? Supported decision-making in theory and practice: A review of literature” (February 2014) at 26; Terry Carney “Clarifying, Operationalising, and Evaluating Supported Decision Making Models” (2014) 1 Research and Practice in Intellectual and Developmental Disabilities 46; T Carney and F Beaupert “Public and Private Bricolage—Challenges Balancing Law, Services & Civil Society in Advancing CRPD Supported Decision Making” (2013) 36(1) UNSW Law Journal 175–201.

  8. 8.

    Victorian Law Reform Commission “Guardianship Final Report” 24 (30 June 2011) at xviii.

  9. 9.

    Carter, B “Supported decision-making: Background and discussion paper” (Office of the Public Advocate, Melbourne, 2009) at 9; Gavin Davidson “Supported and Substitute Decision Making under Mental Capacity Legislation: A review of the international evidence” Knowledge Exchange Seminar Series (Queens University Belfast and Northern Ireland Assembly) at 2.

  10. 10.

    Ibid.

  11. 11.

    “Convention on the Rights of Persons with Disabilities” United Nations. https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html. Accessed 12 August 2017.

  12. 12.

    Ibid; Article 1 of the Convention provides that its purpose is “to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity: Nicholas Caivano “Conceptualizing Capacity: Interpreting Canada's Qualified Ratification of Article 12 of the UN Disability Rights Convention” (2014) 4 Western Journal of Legal Studies 3 at 14.

  13. 13.

    Reform for these laws occurred in many jurisdictions, including Australia, Canada and New Zealand.

  14. 14.

    “Convention on the Rights of Persons with Disabilities” United Nations. https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html. Accessed 12 August 2017.

  15. 15.

    ALRC Discussion Paper 81 “Equality, Capacity and Disability in Commonwealth Laws” (May 2014) at 77 [4.9].

  16. 16.

    “Handbook for Parliamentarians on the Convention on the Rights of Persons with Disabilities and Its Optional Protocol Nº 14—2007 From Exclusion to Equality: Realizing the Rights of Persons with Disabilities, Secretariat for the Convention on the Rights of Persons with Disabilities” United Nations Department Of Economic and Social Affairs (UN-DESA) Division for Social Policy and Development, New York, Secretariat for the Convention on the Rights of Persons with Disabilities Office of the United Nations High Commissioner for Human Rights (OHCHR) Chapter 6: from Pro Visions to Practice: Implementing the Convention at 89, 90.

  17. 17.

    Magdalena McGuire “Supported Decision-making forum: Summary report” (Office of the Public Advocate, 24 February 2010) at 4.

  18. 18.

    EW Maina “The right to equal recognition before the law, access to justice and supported decision making,” CRPD COP (New York, 2009); L Waddington “A New Era in Human Rights Protection in the EC: The Implications of the UNCRPD for the EC” http://ssrn.com/abstract=1027872. Accessed 5 June 2015.

  19. 19.

    Ibid.

  20. 20.

    Amita Dhanda “Constructing A New Human Rights Lexicon: Convention on the Rights of Persons with Disabilities” (2008) 8 SUR—Int'l J on Hum Rts 43 at 44.

  21. 21.

    M Bach and L Kerzner “A New Paradigm for Protecting Autonomy and the Right to Legal Capacity” Law Commission of Ontario (October 2010); S Pathare and L Shields “Supported Decision-Making for Persons with Mental Illness: A Review” (2012) Public Health Reviews 34; Advocacy for Inclusion “Supported Decision Making, Legal Capacity and Guardianship: Implementing Article 12 of the Convention on the Rights of Persons with Disabilities in the Australian Capital Territory” (August 2012); Amnesty International Capacity, Supported Decision Making, Advance Directives and Substitute Decision Making: the Right to Equal Recognition Before the Law-Legal Capacity (2011); Wallace, M Evaluation of the Supported Decision Making Project (Office of the Public Advocate, Amnesty International Ireland, November 2012); Terry Carney “Supported Decision-Making for People with Cognitive Impairments: An Australian Perspective?” (2015) 4 Laws 37–59; Anna Arstein-Kerslake “An empowering dependency: exploring support for the exercise of legal capacity” (2014) Scandinavian Journal of Disability Research 1; J Craigie “A Fine Balance: Reconsidering Patient Autonomy In Light of the UN Convention On The Rights Of Persons With Disabilities” (2015) 29 Bioethics 398; M Browning, C Bigby and J Douglas “Supported Decision Making: Understanding How its Conceptual Link to Legal Capacity is Influencing the Development of Practice” (2014) 1 Research and Practice in Intellectual and Developmental Disabilities 34; J tenBroek “The United Nations Convention on the Rights of Persons with Disabilities: Toward a New International Politics of Disability” (2009) 15 Texas Journal on Civil Liberties & Civil Rights 33; N Devi “Supported Decision-Making and Personal Autonomy for Persons with Intellectual Disabilities: Article 12 of the UN Convention on the Rights of Persons with Disabilities” (2013) 41 Journal of Law, Medicine & Ethics 792.

  22. 22.

    Terry Carney “Clarifying, Operationalising, and Evaluating Supported Decision Making Models” (2014) 1 Research and Practice in Intellectual and Developmental Disabilities 49.

  23. 23.

    Examples where SDM would be capable of wider application include other aspects of forward planning such as will making and the appointment of attorneys for financial or personal matters; but a consideration of these applications is beyond this thesis.

  24. 24.

    Anna Arstein-Kerslake “An empowering dependency: exploring support for the exercise of legal capacity” (2014) Scandinavian Journal of Disability Research 1.

  25. 25.

    T Carney and F Beaupert “Public and Private Bricolage—Challenges Balancing Law, Services & Civil Society in Advancing CRPD Supported Decision Making” (2013) 36(1) UNSW Law Journal 175.

  26. 26.

    Ibid.

  27. 27.

    Empowerment is based on the intrinsic human dignity idea, and the freedom entitled to everyone, which respects personal autonomy; Beryck Beyleveld and Roger Brownsword Human Dignity in Bioethics and Biolaw (Oxford University Press, 1993) Oxford Scholarship Online: March 2012. https://doi.org/10.1093/acprof:oso/9780198268260.003.0001.

  28. 28.

    Mary Donnelly, ‘Best Interests In The Mental Capacity Act: Time To Say Goodbye? 2016 Medical Law Review, 24(3) pp. 318–332.

  29. 29.

    For example, see generally Making Health Care Decisions: A Report on the Ethical and Legal Implications of Informed Consent in the Patient-Practitioner Relationship, Volume One: Report (President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioural Research, United States Government Printing Office, Washington DC, October 1982). See also Conor O’Luanaigh and Brian Lawlor “Drugs that Affect Competence” in Gabriela Stoppe (ed) Competence Assessment in Dementia (Springer, New York, Germany, 2008) at 41; Deborah Bowman “Who decides? Ethical Perspectives on Capacity and Decision-making” in Gabriela Stoppe (ed) Competence Assessment in Dementia (Springer, New York, Germany, 2008) at 51, 52, 53. Deborah Bowman argued that capacity is a fluctuating concept in reality where the patient’s capacity operates on a continuum according to the surrounding factors, as opposed to the legal determination. Thus Bowman pointed out that an assessment of whether a person is mentally competent or otherwise required a consideration of the kind of treatment and the decision to be made.

  30. 30.

    Robert D Dinerstein “Implementing Legal Capacity under Article 12 of the UN Convention on the Rights of Persons with Disabilities: The Difficult Road from Guardianship to Supported Decision-Making” (2011–2012) 19 Hum Rts Brief 8 at 10.

  31. 31.

    Amita Dhanda “Constructing A New Human Rights Lexicon: Convention on the Rights of Persons with Disabilities” (2008) 8 SUR - Int'l J on Hum Rts 43 at 48, 50.

  32. 32.

    Lolle W Nauta “Historical Roots of the Concept of Autonomy in Western Philosophy” (1984) PRAXIS International 363 at 367.

  33. 33.

    Tom L Beauchamp and James F Childress Principles of Biomedical Ethics (7th ed, Oxford University Press, New York, 2013) at 101.

  34. 34.

    Marina Oshana Personal Autonomy in Society (Ashgate Publishing Limited, England, 2006).

  35. 35.

    David J Rothman “The Origins and Consequences of Patient Autonomy: A 25-Year Retrospective” (2001) 9 Health Care Analysis 255 at 255, 256.

  36. 36.

    Alfred I Tauber “Historical and Philosophical Reflections on Patient Autonomy” (2001) 9 Health Care Analysis 299 at 302.

  37. 37.

    David J Rothman “The Origins and Consequences of Patient Autonomy: A 25-Year Retrospective” (2001) 9 Health Care Analysis 255 at 256, 258; Ian Kerridge, Cameron Lowe and Cameron Stewart (eds) Ethics and Law for the Health Professions (4th ed, The Federation Press, NSW, 2013) at 128 on correcting the imbalance of the power between doctor and patient through the introduction of informed consent as a means of protecting the autonomy of the patient.

  38. 38.

    Kant Groundwork for the Metaphysics of Morals Translated by Arnulf Zweig and edited by Thomas E Hill, Jr and Arnulf Zweig (Oxford University Press, US, 2002) at 92; G 4: 440.

  39. 39.

    Kant Groundwork for the Metaphysics of Morals Translated by Arnulf Zweig and edited by Thomas E Hill, Jr and Arnulf Zweig (Oxford University Press, US, 2002) at 92.

  40. 40.

    Ibid, at 95.

  41. 41.

    Ibid, at 205; G 4: 404.

  42. 42.

    Ibid, at 231; G 4: 431.

  43. 43.

    Thomas E Hill Jr Autonomy and Self Respect (Cambridge University Press, USA, 1991) at 43.

  44. 44.

    Ibid, at 30.

  45. 45.

    Ibid, at 34.

  46. 46.

    J B Schneewind Invention of Autonomy: A History of Modern Moral Philosophy (Cambridge University Press, New York, USA, 1998) at 483. For further explanation of Kant’s notion of autonomy, see Henry E Allison Immanuel Kant The Oxford Companion to Philosophy (2nd ed, Oxford University Press, Oxford, 2005).

  47. 47.

    J B Schneewind Invention of Autonomy: A History of Modern Moral Philosophy (Cambridge University Press, New York, USA, 1998) at 509.

  48. 48.

    Ibid, at 484, 485, 509.

  49. 49.

    Ibid, at 515.

  50. 50.

    Isaiah Berlin Four Essays on Liberty (Oxford University Press, London, 1969) at 174.

  51. 51.

    Ibid, at 192.

  52. 52.

    John S Mill On Liberty (James R Osgood and Company, Boston, MA, US, 1871) at 23.

  53. 53.

    Ibid, at 8.

  54. 54.

    John Skorupski The Oxford Companion to Philosophy (2nd ed, Oxford University Press, Oxford, 2005).

  55. 55.

    John S Mill On Liberty (James R Osgood and Company, Boston, MA, US, 1871) at 14.

  56. 56.

    Ibid, at 112, 113.

  57. 57.

    Ibid, at 112, 113.

  58. 58.

    Ibid, at 114.

  59. 59.

    Ibid, at 113.

  60. 60.

    Ibid, at 24.

  61. 61.

    Ibid, at 113.

  62. 62.

    Ibid, at 114.

  63. 63.

    Ibid, at 109, further “the free development of the individuality is one of the leading essentials of well-being”.

  64. 64.

    Ibid, at 123.

  65. 65.

    Ibid, at 110.

  66. 66.

    Ibid, at 27, 28. Mill considered that actions that harm the others can be legitimately interfered with, because “for whatever affects himself, may affect others through himself”.

  67. 67.

    Ibid, at 121.

  68. 68.

    Ibid, at 107, 108.

  69. 69.

    Ibid, at 142.

  70. 70.

    Similarly, Bach and Kerzner in Michael Bach and Lana Kerzner “A New Paradigm for Protecting Autonomy and the Right to Legal Capacity” Law Commission of Ontario (October 2010) at 40 interpreted Mill’s understanding of autonomy as not entirely excluding any assistance in the decision-making process.

  71. 71.

    Tom L Beauchamp and James F Childress Principles of Biomedical Ethics (7th ed, Oxford University Press, New York, Oxford, 2013) at 104.

  72. 72.

    Ibid.

  73. 73.

    Ibid.

  74. 74.

    Tom L Beauchamp and James F Childress Principles of Biomedical Ethics (5th ed, Oxford University Press, USA, 2001) at 57, 58.

  75. 75.

    Ibid, at 63.

  76. 76.

    Tom L Beauchamp and James F Childress Principles of Biomedical Ethics (7th ed, Oxford University Press, USA, 2013) at 107.

  77. 77.

    Ibid.

  78. 78.

    Ibid.

  79. 79.

    Ibid. Beauchamp and Childress referred to the writings of Barbara Herman “Mutual Aid and Respect for Persons” (July 1984) 94 Ethics 577; Onora O’Neill “Universal Laws and Ends-in-Themselves” (1989) 72 Monist 341.

  80. 80.

    Various examples from the cases on treatment refusals illustrate this point: Re C (refusal of medical treatment) [1994] 1 WLR 290 (Fam); and St George's Healthcare NHS Trust v S [1998] 3 WLR 936 (CA); [1998] 3 All ER 673 (CA). In the latter, Ms S, who refused to deliver her baby via Caesarean section, risking her unborn child’s life was immediately referred to the psychiatric specialists for an assessment of her mental competence. The mental capacity of Miss T was similarly questioned when she refused blood transfusion: NHS Trust v T (adult patient: refusal of medical treatment) [2004] EWHC 1279 (Fam). In Heart of England NHS Foundation Trust v JB (by her litigation friend, the Official Solicitor) [2014] EWHC 342 (COP), Ms JB was referred to the Court of Protection for a determination of whether she was capable of refusing treatment when she decided against leg amputation.

  81. 81.

    Jodi Halpern “Empowering patients is good medical care” (2013) 20(2) Philosophy, Psychiatry & Psychology 179 at 180.

  82. 82.

    Ibid.

  83. 83.

    St George's Healthcare NHS Trust v S [1998] 3 WLR 936 (CA).

  84. 84.

    Margaret Brazier Medicine, Patients and the Law (3rd ed, Penguin Group, England, 2003) at 39. Similarly, Beauchamp and Childress have remarked on the proximity between competence and autonomy; see Tom L Beauchamp and James F Childress Principles of Biomedical Ethics (7th ed, Oxford University Press, USA, 2013) at 116.

  85. 85.

    Grant Gillett referred to these concepts, but particularly highlighted that constructing autonomy under the concept of competence effectively legitimised “a search and disable policy” for people “who are differently oriented in the human life-world” where “the elderly and mental health survivors both of whom may be considered to suffer from a defect of volition due to mental incompetence.” See Grant Gillett “How do I learn to be me again? Autonomy, life skills and identity” in L Radoilska (ed) Autonomy and Mental Disorder (Oxford University Press, Oxford, 2012) 233 at 233.

  86. 86.

    Re T [1992] EWCA Civ 18 is an example where one of the reasons her AD was declined was because the trial court found that Miss T had been misinformed about the alternatives to blood products, and thus her refusal to consent to blood transfusion was not genuine.

  87. 87.

    Tom L Beauchamp and James F Childress Principles of Biomedical Ethics (7th ed, Oxford University Press, USA, 2013) at 104.

  88. 88.

    For example, the case of Re T [1992] EWCA Civ 18.

  89. 89.

    X v The Sydney Children's Hospitals Network [2013] NSWCA 320 there is never really an autonomous decision because the child has been cocooned in faith.

  90. 90.

    Tom L Beauchamp and James F Childress Principles of Biomedical Ethics (7th ed, Oxford University Press, New York, Oxford, 2013) at 104, 138–139.

  91. 91.

    For example see Hunter and New England Area Health Service v A [2009] NSWSC 761 where the patient had ticked the box for refusing dialysis.

  92. 92.

    Jonathan Herring Medical Law and Ethics (4th ed, Oxford University Press, UK, 2012) at 201. For example, ideal desire autonomy, best desire autonomy and current desire autonomy in the former and the libertarian, liberal and communitarian approaches.

  93. 93.

    Ibid.

  94. 94.

    Ibid, This is known as the concept of ‘risk-relative capacity’.

  95. 95.

    HE v A Hospital NHS Trust & AE (by her litigation friend the Official Solicitor) [2003] EWHC 1017 (Fam) at [24].

  96. 96.

    For example, in respect of the prohibition of sexual relationships between doctors and patients: S G Perez, R J Gelpi and A M Rancich “Doctor–patient sexual relationships in medical oaths” (2006) 32 J Med Ethics 702.

  97. 97.

    Raymond Tallis Hippocratic Oaths: Medicine and its Discontents (Atlantic Books, London, 2004) at 89.

  98. 98.

    Ibid, at 90.

  99. 99.

    Ibid.

  100. 100.

    Ibid, at 98.

  101. 101.

    Michael Bach and Lana Kerzner “A New Paradigm for Protecting Autonomy and the Right to Legal Capacity” Law Commission of Ontario (October 2010) at 38. Additionally, I have illustrated the main challenges towards valid and applicable ADs in ch 4, particularly on the grounds of mental incapacity.

  102. 102.

    Ibid, at 42.

  103. 103.

    For example see Vikki A Entwistle and Ian S Watt “Patient involvement in treatment decision-making: The case for a broader conceptual framework” (2006) 63 Patient Education and Counseling 268 at 270.

  104. 104.

    http://www.merriam-webster.com/dictionary/empower.

  105. 105.

    http://www.oxforddictionaries.com/definition/english/empower.

  106. 106.

    Cheryl H Gibson “A concept analysis of empowerment” (1991) 16 Journal of Advanced Nursing 354 at 354, 355.

  107. 107.

    Ibid.

  108. 108.

    Inger Holmstrom and Marta Roing “The relation between patient-centeredness and patient empowerment: A discussion on concepts” (2010) 79 Patient Education and Counseling 167.

  109. 109.

    Robyn Ouschan, Jillian C Sweeney and Lester W Johnson “Dimensions of Patient Empowerment” (2000) 18(1–2) Health Marketing Quarterly 99 at 102.

  110. 110.

    Catherine Feste and Robert M Anderson “Empowerment: from philosophy to practice” (1995) 26 Patient Education and Counseling 139.

  111. 111.

    Cheryl H Gibson “A concept analysis of empowerment” (1991) 16 Journal of Advanced Nursing 354. See also Christine M Rodwell “An analysis of the concept of empowerment” (1996) 23 Journal of Advanced Nursing 305; Judi Chamberlin and Aart H Schene “A working definition of empowerment” (1997) 20(4) Psychiatric Rehabilitation Journal 43; Stewart Piper “Patient empowerment: Emancipatory or technological practice?” (2010) 79 Patient Education and Counseling 173 at 174.

  112. 112.

    Cheryl H Gibson “A concept analysis of empowerment” (1991) 16 Journal of Advanced Nursing 354.

  113. 113.

    Catherine Feste and Robert M Anderson “Empowerment: from philosophy to practice” (1995) 26 Patient Education and Counseling 139.

  114. 114.

    Robert M Anderson and Martha M Funnell “Patient empowerment: Myths and misconceptions” (2010) 79 Patient Education and Counseling 277 at 278.

  115. 115.

    Judi Chamberlin and Aart H Schene “A working definition of empowerment” (1997) 20(4) Psychiatric Rehabilitation Journal 43; Stewart Piper “Patient empowerment: Emancipatory or technological practice?” (2010) 79 Patient Education and Counseling 173 at 174.

  116. 116.

    Grant Gillett “How do I learn to be me again? Autonomy, life skills and identity” in L Radoilska (ed) Autonomy and Mental Disorder (Oxford University Press, Oxford, 2012) at 233.

  117. 117.

    Ibid, at 235.

  118. 118.

    Stewart Piper “Patient empowerment: Emancipatory or technological practice?” (2010) 79 Patient Education and Counseling 173.

  119. 119.

    Judi Chamberlin and Aart H Schene “A working definition of empowerment” (1997) 20(4) Psychiatric Rehabilitation Journal 43.

  120. 120.

    For example, in care of diabetic patients: Robert M Anderson and Martha M Funnell “Patient empowerment: Myths and misconceptions” (2010) 79 Patient Education and Counseling 277.

  121. 121.

    Lisa N Rossignol and Michael K Paasche-Orlow “Empowering Patients Who Have Specific Learning Disabilities” (2013) 310 (14) JAMA 1445.

  122. 122.

    S McCann and J Weinmanb “Empowering the patient in the consultation: a pilot study” (1996) 27 Patient Education and Counseling 227.

  123. 123.

    Robyn Ouschan, Jillian C Sweeney and Lester W Johnson “Dimensions of Patient Empowerment” (2000) 18(1–2) Health Marketing Quarterly 99.

  124. 124.

    Parisa Aslani “Patient empowerment and informed decision-making” 2013 (21) International Journal of Pharmacy Practice 347.

  125. 125.

    Ibid, at 170.

  126. 126.

    Carl J Dunst and Carol M Trivette “Empowerment, effective help giving practices and family-centered care” (July–August 1996) 22(4) Pediatric Nursing 334.

  127. 127.

    An example of a form of patient empowerment in medical decision-making in the context of preventing medical errors is patient advocacy groups. These groups work with patients in educating them on various health care issues and raising awareness about preventing medical errors with healthcare providers. See Clara Aw´e and Swu-Jane Lin “A Patient Empowerment Model to Prevent Medication Errors” (2003) 27(6) Journal of Medical Systems 503 at 514, 515. A patient advocate is also a feature in the New Zealand healthcare system.

  128. 128.

    Heather K Spence Laschinger and others “Towards a comprehensive theory of nurse/patient empowerment: applying Kanter’s empowerment theory to patient care” (2010) 18 Journal of Nursing Management 4; Penny Powers “Empowerment as Treatment and the Role of Health Professionals” (2003) 26 Advances in Nursing Science 227; Mushin Lee and Joon Koh “Is empowerment really a new concept?” (2001) 12 The International Journal of Human Resource Management 684; N J Fox, K J Ward and A J O’Rourke “The ‘expert patient’: empowerment or medical dominance? The case of weight loss, pharmaceutical drugs and the Internet” (2005) 60 Social Science & Medicine 1299; Patricia M Wilson, Sally Kendall and Fiona Brooks “The Expert Patients Programme: a paradox of patient empowerment and medical dominance” (2007) 15 Health and Social Care in the Community 426; Flis Henwood, Sally Wyatt, Angie Hart and Julie Smith “‘Ignorance is bliss sometimes’: constraints on the emergence of the ‘informed patient’ in the changing landscapes of health information” (2003) 25(6) Sociology of Health & Illness 589; Peter Salmon and George M Hall “Patient empowerment and control: a psychological discourse in the service of medicine” (2003) 57 Social Science & Medicine 1969; Isabelle Aujoulat, Renzo Marcolongo, Leopoldo Bonadiman and Alain Deccache “Reconsidering patient empowerment in chronic illness: A critique of models of self-efficacy and bodily control” (2008) 66 Social Science & Medicine 1228; Clara Aw´e and Swu-Jane Lin “A Patient Empowerment Model to Prevent Medication Errors” (2003) 27(6) Journal of Medical Systems 503; James E Rohrer and others “Patient-centredness, self-rated health, and patient empowerment: should providers spend more time communicating with their patients?” (2008) 14 Journal of Evaluation in Clinical Practice 548; Isabelle Aujoulat, William d’Hoore and Alain Deccache “Patient empowerment in theory and practice: Polysemy or cacophony?” (2007) 66 Patient Education and Counseling 13; Nancy Tomes “Patient empowerment and the dilemmas of late-modern medicalisation” (2007) 369 Lancet 698; Robert M Anderson “Patient Empowerment and the Traditional Medical Model: A case of irreconcilable differences?” (1995) 18(3) Diabetes Care 412; Kathleen Johnston Roberts “Patient empowerment in the United States: a critical commentary (1999) 2 Health Expectations 82.

  129. 129.

    Inger Holmstrom and Marta Roing “The relation between patient-centeredness and patient empowerment: A discussion on concepts” (2010) 79 Patient Education and Counseling 167 at 168.

  130. 130.

    Fenella Rouse “Does Autonomy Require Informed and Specific Refusal of Life-Sustaining Medical Treatment?” (1989–1990) 5 Issues L & Med 321 at 324, 325. See also Gerard V Bradley “Does Autonomy Require Informed and Specific Refusal of Life-Sustaining Medical Treatment?” (1989–1990) 5 Issues L & Med 301 at 303 where the author, using the example of state governance to its citizens, that “[I]t is neither theoretically nor practically true that where the state is held at bay, citizen behavior is therefore a matter of individual autonomy.”

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    Hui Yun Chan

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Chan, H.Y. (2018). Rethinking the Approach to Advance Directives. In: Advance Directives: Rethinking Regulation, Autonomy & Healthcare Decision-Making. International Library of Ethics, Law, and the New Medicine, vol 76. Springer, Cham. https://doi.org/10.1007/978-3-030-00976-2_4

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