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The Making of Advance Directives

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Book cover 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

Medical practices have evolved since the Hippocratic traditions. Under the Hippocratic tradition, doctors were responsible for the wellbeing of the patient, and for keeping them from harm, which gave rise to the practice of benevolent deception. This may be seen as medical paternalism today. Pursuant to this practice, doctors, having the authority to diagnose, treat and dispense medicine, were encouraged to withhold any information that was deemed to harm the patient’s prognosis. They are required to refrain from inflicting harm to the patient (non-maleficence) and act positively towards promoting good or removing harm (beneficence). A doctor’s etiquette was viewed as essential in gaining patients’ trust, a feature that distinguished doctors socially from the ordinary people.

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Notes

  1. 1.

    Jonathan F Will “A Brief Historical and Theoretical Perspective on Patient Autonomy and Medical Decision Making” (March 2011) 139(3) Chest 669.

  2. 2.

    Ibid.

  3. 3.

    Tom L Beauchamp and James F Childress Principles of Biomedical Ethics (5th ed, Oxford University Press, USA, 2001) at 115.

  4. 4.

    Ibid.

  5. 5.

    Ruth R Faden and Tom L Beauchamp A History and Theory of Informed Consent (Oxford University Press, New York, Oxford, 1986) at 62.

  6. 6.

    Nan D Hunter “Rights Talk and Patient Subjectivity: The Role of Autonomy, Equality, and Participation Norms” (2010) 45 Wake Forest L Rev 1525 at 1530.

  7. 7.

    John M Last (ed) A Dictionary of Public Health (Oxford University Press, Oxford, 2007).

  8. 8.

    “The Tuskegee Timeline” (2013) Centers for Disease Control and Prevention. www.cdc.gov/tuskegee/timeline.htm. Accessed 18 November 2017; “Presidential Mandate” Tuskegee University National Center for Bioethics in Research and Health Care. http://tuskegeebioethics.org/presidential-mandate/. Accessed 5 July 2018.

  9. 9.

    Nan D Hunter “Rights Talk and Patient Subjectivity: The Role of Autonomy, Equality, and Participation Norms” (2010) 45 Wake Forest L Rev 1525 at 1533.

  10. 10.

    Eleanor Singer and Felice J Levine “Protection of Human Subjects of Research: Recent Developments and Future Prospects for the Social Sciences” (Spring, 2003) 67(1) The Public Opinion Quarterly 148.

  11. 11.

    Johannes Morsink The Universal Declaration of Human Rights: Origins, Drafting and Intent (University of Pennsylvania Press, Philadelphia, USA, 1999) at 36.

  12. 12.

    Ibid., at 313.

  13. 13.

    Arts 1, 2 Universal Declarations of Human Rights.

  14. 14.

    World Medical Association Declaration of Geneva 2017.

  15. 15.

    “Medical Changes from 1945” (2014) Historylearningsite.co.uk. http://www.historylearningsite.co.uk/medical_changes_from_1945.htm. Accessed 6 November 2017.

  16. 16.

    “The 1960s: Medicine and Health: Overview” (2001) Encyclopedia.com. http://www.encyclopedia.com/doc/1G2-3468302401.html. Accessed 5 November 2017.

  17. 17.

    Mark J Hanson “The Idea of Progress and the Goals of Medicine” in Mark J Hanson and Daniel Callahan (eds) The Goals of Medicine: The Forgotten Issue in Health Care Reform (Georgetown University Press, Washington DC, 1999) at 144.

  18. 18.

    Daniel Callahan “Bioethics and Policy—A History” in Mary Crowley (ed) From Birth to Death and Bench to Clinic: The Hastings Center Bioethics Briefing Book for Journalists, Policymakers, and Campaigns (The Hastings Center, Garrison, NY, 2008) ix–x.

  19. 19.

    Daniel Callahan “Bioethics and Policy—A History” in Mary Crowley (ed) From Birth to Death and Bench to Clinic: The Hastings Center Bioethics Briefing Book for Journalists, Policymakers, and Campaigns (The Hastings Center, Garrison, NY, 2008) ix–x. See also John-Stewart Gordon, “Bioethics” Internet Encyclopedia of Philosophy. http://www.iep.utm.edu/bioethic/. Accessed 15 November 2017.

  20. 20.

    Alfred I Tauber “Historical and Philosophical Reflections on Patient Autonomy” (2001) 9 Health Care Analysis 299 at 303.

  21. 21.

    Ibid., at 302.

  22. 22.

    “Changes in Hospital Care: The Patient’s Bill of Rights” (2014) Virginia Health Information. http://www.vhi.org/hguide_patientbill.asp. Accessed 23 October 2017.

  23. 23.

    Ibid.

  24. 24.

    Jonathan F Will “A Brief Historical and Theoretical Perspective on Patient Autonomy and Medical Decision Making Part II: The Autonomy Model” (June 2011) 139(6) Chest 1491 at 1496.

  25. 25.

    “History of the World Federation of the Right to Die Societies” The World Federation of Right to Die Societies. http://www.worldrtd.net/history-world-federation-right-die-societies; “Tokyo Declaration of August, 1976” The World Federation of Right to Die Society. http://www.worldrtd.net/it/news/tokyo-declaration-august-1976. Accessed 5 June 2017.

  26. 26.

    Ian Dowbiggin A Concise History of Euthanasia: Life, Death, God and Medicine (Rowman & Littlefield Publishers, Inc., USA, 2005) at 125.

  27. 27.

    Ian Dowbiggin A Merciful End: The Euthanasia Movement in Modern America (Oxford University Press, New York, 2003) at 121.

  28. 28.

    Luis Kutner “The Living Will: The Epitome of Human Dignity in Coping with the Historical Event of Death” (1987) 64 U Det L Rev 661.

  29. 29.

    Ian Dowbiggin A Merciful End: The Euthanasia Movement in Modern America (Oxford University Press, New York, 2003) at 121.

  30. 30.

    Ian Dowbiggin A Concise History of Euthanasia: Life, Death, God and Medicine (Rowman & Littlefield Publishers, Inc., USA, 2005) at 124.

  31. 31.

    Ian Dowbiggin A Merciful End: The Euthanasia Movement in Modern America (Oxford University Press, New York, 2003) at 121.

  32. 32.

    Ian Dowbiggin A Concise History of Euthanasia: Life, Death, God and Medicine (Rowman & Littlefield Publishers, Inc., USA, 2005) at 124.

  33. 33.

    Schloendorff v Society of New York Hospital 105 NE 92 (NY 1914).

  34. 34.

    Ibid.

  35. 35.

    Salgo v Leland Stanford Jr Univ Bd of Tr 317 P2d 170 (Cal Ct App 1957); also reaffirmed in Canterbury v Spence 464 F2d 772–790 (DC Cir 1972). The range of patient-centred approaches includes the necessity to inform the patient about the risks and complications in the case, even if it means that the patient will refuse to consent to treatment (Salgo v Leland Stanford Jr Univ Bd of Tr 317 P2d 170 (Cal Ct App 1957); the Court of Appeal held the doctor negligent in failing to disclose the risk of paralysis from the operation. (Canterbury v Spence 464 F2d 772–790 (DC Cir 1972); a patient’s refusal to amputate gangrenous leg despite initial consent was respected (Grace R Lane v Rosaria Candura 376 N E 2d 1232 (Mass App Ct 1978); and the need for full disclosure of risks to radiation and offering alternative treatment options to the patient (Irma Natanson, Appellant v John R Kline and St Francis Hospital and School of Nursing, Inc., Appellees 354 P 2d 670 (Kan 1960).

  36. 36.

    Sidaway v Bethlem Royal Hospital Governors and others [1985] 1 AC 871 concerning a doctor’s duty to warn of treatment risks; Rogers v Whitaker [1992] 16 BLMR 148; Hills v Potter and others [1984] 1 WLR 130; Reibl v Hughes [1980] 2 SCR 880: Mr. Reibl was entitled to know the risk that as a result of the operation he could die or suffer a stroke of varying degrees of severity and the doctor failed to take sufficient care to communicate the purpose of the operation and to convey and assure that he understood the gravity, nature and extent of risks specifically attendant on the endarterectomy. In Chester v Afshar [2004] UKHL 41 the surgeon was held negligent even for failing to disclose an inherently small risk regardless of when the operation is carried out.

  37. 37.

    Cruzan v Harmon 760 SW 2d 408 (Mo 1988). In this case, the right to consent extends to the right to refuse; in In re Estate of Brooks 32 Ill 2d 361, 205 NE 2d 435 (1965) it was held that even if the decision is foolish, the refusal has to be respected. The same pronouncement was made in Re Yetter 62 Pa D & C 2d 619 (1973). In Brophy 497 NE 2d 626 (Mass 1986) the right to self determination, human dignity is the basis for informed consent to medical treatment and consequently the right to refuse medical treatment. The recognition of treatment refusal arose from informed consent, also in Matter of Guardianship of LW 482 NW 2d 60 (Wis 1992).

  38. 38.

    For example, in Chatterton v Gerson & Anor [1981] QB 432 Bristow J found that “there is no obligation on the doctor to canvass with the patient anything other than the inherent implications of the particular operation he intends to carry out. The fundamental assumption is that he knows his job and will do it properly. But he ought to warn of what may happen by misfortune however well the operation is done.”

  39. 39.

    See Jonathan F Will “A Brief Historical and Theoretical Perspective on Patient Autonomy and Medical Decision Making Part II: The Autonomy Model” (June 2011) 139(6) Chest 1491.

  40. 40.

    Ian Dowbiggin A Concise History of Euthanasia: Life, Death, God and Medicine (Rowman & Littlefield Publishers, Inc., USA, 2005) at 124.

  41. 41.

    In The Matter of Karen Quinlan, An Alleged Incompetent 355 A 2d 647 (NJ 1976).

  42. 42.

    Saikewicz 370 NE 2d 417 (Mass 1977); re Brown 478 So 2d 1033 (Miss 1985); Brophy 497 NE 2d 626 (Mass 1986) and Cruzan 497 US 261 (1990).

  43. 43.

    Cruzan v Director, Missouri Department of Health 497 US 261 (1990).

  44. 44.

    The Encyclopaedia of Bioethics (Revised ed, 1995) vol 1 Warren Thomas Reich, at [573].

  45. 45.

    Kennedy and Grubb Medical Law (3rd ed, Butterworths, London, 2000) at 2043.

  46. 46.

    Ibid.

  47. 47.

    Ibid., at 2047.

  48. 48.

    “Chronology of Assisted Dying” (2013) Death with Dignity National Center. http://www.deathwithdignity.org/historyfacts/chronology. Accessed 19 June 2017.

  49. 49.

    It was reported that the leaders of Jehovah’s Witnesses have taken a less stringent approach towards refusal of blood transfusion following a long standing controversial ruling that Jehovah’s Witnesses faced rejection from the faith if they received blood transfusion. While the leaders maintained that receiving blood is contrary to the tenets of the Jehovah’s Witness faith, this act does not automatically expel them from being a member of the faith: Jane Little “Jehovah's Witnesses drop transfusion ban” BBC (UK, Wednesday, 14 June 2000). http://news.bbc.co.uk/1/hi/world/790967.stm. Accessed 8 October 2017.

  50. 50.

    For example, the English Courts have declined to uphold the ADs refusing blood transfusions in Re T [1992] EWCA Civ 18; HE v A Hospital NHS Trust & AE [2003] EWHC 1017 (Fam); NHS Trust v T (adult patient: refusal of medical treatment) [2004] EWHC 1279 (Fam). These cases will be considered in Chap. 4.

  51. 51.

    For example, Malette v Shulman (1990) 72 OR (2d) 417 is an example of the authoritativeness and binding nature of an AD refusing blood transfusion. In this case, the Ontario Court of Appeal upheld the patient’s no blood transfusion card as binding on the doctor. This case will be explored further in Chapter 4. Other recent cases include Newcastle upon Tyne Hospitals Foundation Trust v LM [2014] EWCOP 454; Nottinghamshire Healthcare NHS Trust v RC [2014] EWCOP 1317.

  52. 52.

    See for example, Re T [1992] EWCA Civ 18 and X v The Sydney Children's Hospitals Network [2013] NSWCA 320 involving a child of Jehovah Witness belief, the refusal was questionable as there was never really an autonomous decision because the child has been cocooned in faith.

  53. 53.

    Slater v Baker & Stapleton (1767) 2 Wils 359, 95 ER 860 (KB). This is an early reported decision on medical negligence where patient consent was lacking in surgical procedures using experimental devices.

  54. 54.

    A small exception to the prevalent paternalistic medical practices can be found in the earliest reported medical negligence decision on the patient’s right to consent in Slater v Baker & Stapleton (1767) 2 Wils 359, 95 ER 860 (KB) in England in 1767. Although Slater was a case of medical negligence, which concerned surgeons who, without obtaining the patient’s consent, rearranged the patient’s femoral fracture using experimental devices it nonetheless provided early indications of challenging physicians’ medical authority. See Tom O'Shea “Consent in History, Theory and Practice” Essex Autonomy Project Green Paper Report (University of Essex: Essex Autonomy Project, 2011). http://autonomy.essex.ac.uk/consent-in-history-theory-and-practice. Accessed 10 March 2017.

  55. 55.

    Bolam v Friern Hospital Management Committee [1957] 1 WLR 583 (QB); Sidaway v Bethlem Royal Hospital Governors and others [1985] 1 AC 871(HL).

  56. 56.

    Chester v Afshar [2004] UKHL 41.

  57. 57.

    Montgomery (Appellant) v Lanarkshire Health Board (Respondent) (Scotland) [2015] UKSC 11.

  58. 58.

    Rogers v Whitaker (1992) 175 CLR 479 (HCA).

  59. 59.

    Bolam v Friern Hospital Management Committee [1957] 1 WLR 582 (QB) was endorsed in Maynard v West Midlands Regional Health Authority [1984] 1 WLR 634 (HL) and Sidaway v Bethlem Royal Hospital Governors and others [1985] 1 AC 871 (HL), but re-examined in Bolitho v City and Hackney Health Authority [1992] 13 BMLR 111 (CA).

  60. 60.

    Jonathan F Will “A Brief Historical and Theoretical Perspective on Patient Autonomy and Medical Decision Making” (June 2011) 139(6) Chest 1491. Ruth R Faden and Tom L Beauchamp A History and Theory of Informed Consent (Oxford University Press, New York, Oxford, 1986) at 86.

  61. 61.

    Jonathan F Will “A Brief Historical and Theoretical Perspective on Patient Autonomy and Medical Decision Making” (March 2011) 139 (3) Chest 669.

  62. 62.

    Kennedy and Grubb Medical Law (3rd ed, Butterworths, London, 2000) at 2047.

  63. 63.

    CY Hong, LG Goh and HP Lee “The Advance Directive—A Review” (1996) 37 Singapore Med J 411 at 412.

  64. 64.

    Age Concern Institute of Gerontology and Centre of Medical Law and Ethics The Living Will: Consent to Treatment at the End of Life; A Working Party Report (Edward Arnold, 1988) at 48.

  65. 65.

    Ibid.

  66. 66.

    Ibid., at 1–3.

  67. 67.

    Re T (adult: refusal of medical treatment) [1992] EWCA Civ 18.

  68. 68.

    Re C (adult: refusal of treatment) [1994] 1 WLR 290 (Fam).

  69. 69.

    Airedale NHS Trust v Bland [1993] AC 789; Re JT (Adult: Refusal of Medical Treatment) [1998] 1 FLR 48 and Re AK (Medical Treatment: Consent) [2001] FLR 129.

  70. 70.

    British Medical Association “Advance Decisions and Proxy Decision-making in Medical Treatment and Research: Guidance from the BMA’s Medical Ethics Department” (BMA, 2007).

  71. 71.

    Ibid., at 2, 3.

  72. 72.

    Ibid., at 2.

  73. 73.

    Ben White, Fiona McDonald and Lindy Willmott Health Law in Australia, (Thomson Reuters (Professional) Australia Ltd., NSW, 2010) at 94.

  74. 74.

    Secretary, Department of Health and Community Services (NT) v JWB and SMB (Marion’s case) [1992] 175 CLR 218.

  75. 75.

    Hunter and New England Area Health Service v A (2009) 74 NSWLR 88.

  76. 76.

    Ben White, Fiona McDonald and Lindy Willmott Health Law in Australia (Thomson Reuters (Professional) Australia Ltd., NSW, 2010) at 94, 158.

  77. 77.

    Jocelyn Downie “Assisted Death at the Supreme Court of Canada,” in Jocelyn Downie and Elaine Gibson (eds) Health Law at the Supreme Court of Canada (Irwin Law, Toronto, 2007) 219 at 232, 233–234.

  78. 78.

    Malette v Shulman [1990] 67 DLR (4th) 321.

  79. 79.

    Rodriguez v British Columbia (Attorney General) [1993] 3 SCR 519, the majority of the Supreme Court of Canada embraced key lower court withholding and withdrawal cases at 598: “Canadian courts have recognised a common law right of patients to refuse consent to medical treatment or to demand that treatment, once commenced, be withdrawn or discontinued. This right has been specifically recognised to exist even if the withdrawal from or refusal of treatment may result in death.”

  80. 80.

    Ciarlariello v Schacter [1993] 2 SCR 119 was a case involving a woman who changed her mind in the middle of a procedure (an angiogram) and while having originally consented, cried out “enough, no more, stop the test.” It provides a clear and broad statement on the Supreme Court of Canada’s view of refusals of treatment. The Supreme Court at 135 stated that “it should not be forgotten that every patient has a right to bodily integrity.”

  81. 81.

    www.advancecareplanning.org.au.

  82. 82.

    Keri Thomas and Ben Lobo (eds) Advance Care Planning in End of Life Care (Oxford University Press, Oxford, 2011) at 4.

  83. 83.

    For example, End of Life Care Strategy published by the National Health Services (NHS), Gold Standards Framework (GSF). https://www.gov.uk/government/publications/end-of-life-care-strategy-promoting-high-quality-care-for-adults-at-the-end-of-their-life https://www.nhs.uk/Planners/end-of-life-care/Pages/advance-decision-to-refuse-treatment.aspx. Accessed 18 October 2017; Dying Matters Coalition. www.dyingmatters.org. Australia, Respecting Patient Choices Programme (RPCS), National Framework for Advance Care Directives (September 2011) Australian Health Ministers’ Advisory Council at http://www.coaghealthcouncil.gov.au/Publications/Reports. Accessed 9 November 2017; Canada, Speak Up. www.advancecareplanning.ca. MyVoice: Expressing my wishes for future healthcare treatment, Advance Care Planning Guide. http://www.health.gov.bc.ca/library/publications/year/2013/MyVoice-AdvanceCarePlanningGuide.pdf. Accessed 9 November 2017; National POLST Paradigm, USA, Physician Order for Life Sustaining Treatment (POLST). http://polst.org/advance-care-planning/polst-and-advance-directives/. Accessed 8 November 2017; New York State Department of Health, Medical Order for Life Sustaining Treatment (MOLST). https://www.health.ny.gov/professionals/patients/patient_rights/molst/. Accessed 9 November 2017; National Healthcare Decisions Day. https://www.nhdd.org/#welcome. Accessed 7 November 2017; www.mylifedirective.org; www.compassionandsupport.org; https://www.agingwithdignity.org.

  84. 84.

    The Department of Constitutional Affairs, the NHS, Department of Health, the Public Guardian Office and the Mental Capacity Implementation Programme has published various toolkits designed to ensure that the Mental Capacity Act and the Code of Practice is operationalised to the public, social worker, caregivers, doctors and nurses. The various publications are: UK ADRT Support Sheet and Fact Sheet, the Making Decision series which include Making Decisions: A Guide for People who Work in Health and Social Care (National Care Association, Mental Capacity Implementation Programme, 2009, OPG603), Making Decisions: The Independent Mental Capacity Advocate (IMCA) Service, written by Sue Lee of Speaking Up, 2007; Making Decision: About your health, welfare or finances, who decides when you can’t (2009) Turning Point, Scope and Mind who are members of the Making Decisions Alliance; Making Decisions: A Guide for Family, Friends and Unpaid Carers (2007) Turning Point, Sense, Alzheimers Society, Age Concern; Making Decisions: A Guide for Advice Workers, OPG604, 2009.

  85. 85.

    Nancy Freeborne, Joanne Lynn and Norman A Desbiens “Insights about dying from the SUPPORT Project” (2000) 48(5) Journal of the American Geriatrics Society S199. In the study, the authors found that ADs were introduced at a later stage of terminal illness when the patient has become unable to participate effectively in expressing their wishes. They suggested that there is room for advance care planning at an earlier stage before incapacity takes place, which should be helpful towards improving care condition in patients who are terminally ill.

  86. 86.

    Judith A C Rietjens, Rebecca L Sudore, Michael Connolly, Johannes J van Delden, Margaret A Drickamer, Mirjam Droger, Agnes van der Heide, Daren K Heyland, Dirk Houttekier, Daisy J A Janssen, Luciano Orsi, Sheila Payne, Jane Seymour, Ralf J Jox, Ida J Korfage, on behalf of the European Association for Palliative Care Definition and recommendations for advance care planning: an international consensus supported by the European Association for Palliative Care (2017) 18 Lancet Oncol e543–51.

  87. 87.

    Ibid.

  88. 88.

    Ibid. at 543.

  89. 89.

    Ibid. at 546.

  90. 90.

    Anderson v St. Francis-St. George Hosp., Inc. 671 NE 2d 225 (Ohio 1996); McGuiness v Barnes No. A-3457-94T5 (NJ Supr Ct App Div (1996); further see the commentaries in Adam Milani “Better off Dead than Disabled? Should courts recognise a ‘wrongful living’ cause of action when doctors fail to honor patient’s advance directives?” (1997) Wash & Lee L Rev 149; Daniel Pollack, Chaim Steinmetz and Vicki Lens “Anderson v St. Francis-St. George Hospital: Wrongful Living from an American and Jewish Legal Perspectives” (1997) 45 Cleveland State Law Review 621; Philip G Peters Jr “The Illusion of Autonomy at the End of Life: Unconsented Life Support and the Wrongful Life Analogy” (1998) 45 UCLA Law Review 673; Colin Gavaghan “Anticipatory Refusals and the action of wrongful living” (2000) 5 Medical Law International 67; Holly Fernandez Lynch, Michele Mathes and Nadia N Sawicki “Compliance With Advance Directives: Wrongful Living and Tort Law Incentives” (2008) 2 J Legal Medicine 29.

  91. 91.

    Marina Oshana Personal Autonomy in Society (Ashgate Publishing Ltd., England, 2006); Tom L Beauchamp and James F Childress Principles of Biomedical Ethics (7th ed, Oxford University Press, New York, Oxford, 2013).

  92. 92.

    Lindy Willmott, Ben White and Ben Mathews “Law, Autonomy and Advance Directives” 2010 (18) Journal of Law and Medicine 366.

  93. 93.

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

  94. 94.

    Other examples of exceptions to patient autonomy in the United States are broadly premised on consideration for other parties’ rights, most notably preventing suicide and maintaining the professional and ethical integrity of the medical professionals: See Anne Falmme and Heidi Forster “Legal limits: when does autonomy in health care prevail?” in Michael Freeman and Andrew Lewis (eds) Law and Medicine: Current Legal Issues vol. 3 (Oxford University Press, US, 2000) at 156.

  95. 95.

    Margaret Brazier Medicine, Patients and the Law (3rd ed, Penguin Group, England, 2003) at 39.

  96. 96.

    R (on the application of Oliver Leslie Burke) v The General Medical Council, The Disability Rights Commission, The Official Solicitor to the Supreme Court [2004] EWHC 1879 (Admin).

  97. 97.

    Ibid., at [3].

  98. 98.

    Ibid., at [4].

  99. 99.

    Ibid., at [6], [24].

  100. 100.

    Ibid., at [225].

  101. 101.

    Ibid., at [166].

  102. 102.

    Burke v The General Medical Council, The Disability Rights Commission and others [2005] EWCA Civ 1003.

  103. 103.

    Ibid., at [51] per Lord Phillips MR.

  104. 104.

    Ibid., at [31].

  105. 105.

    Shortland v Northland Health Ltd. [1998] 1 NZLR 433 (CA).

  106. 106.

    Lowns v Woods by his next friend the Protective Commissioner and Ors [1996] Aust Torts Reports 81 (NSW CA).

  107. 107.

    We will see that the conventional understanding of autonomy would not necessarily apply to ADs. This notion will be explored in Chap. 4 where I consider the supported decision-making approach in ADs.

  108. 108.

    Thomas May “Reassessing the Reliability of Advance Directives” (1997) 6 Cambridge Quarterly of Healthcare Ethics 325; John K Davis “Precedent Autonomy and Subsequent Consent” (June 2004) 7 Ethical Theory and Moral Practice 267.

  109. 109.

    See for example Cameron Stewart “Advance Directives: Disputes and Dilemmas” in Ian Freckelton and Kerry Petersen (eds) Disputes and Dilemma in Health Law (The Federation Press, Australia, 2006); Thomas A Faunce and Cameron Stewart “The Messiha and Schiavo cases: third-party ethical and legal interventions in futile care disputes” (2005) 183 MJA 261; M Parker and others “Two steps forward, one step back: advance care planning, Australian regulatory frameworks and the Australian Medical Association” (2007) 37 Internal Medicine Journal 637; Sheila McLean “Advance Directives: Legal and Ethical Considerations” in N Pace and S McLean (eds) Ethics and the Law in Intensive Care (OUP, Oxford, 1996); Colin Gavaghan “Trial of wills—to sue or not to sue” vol. 18 number 3 (1998) 18 VESS Newsletter; Colin Gavaghan “Anticipatory Refusals and the action of wrongful living” (2000) 5 Medical Law International 67.

  110. 110.

    Cees MPM Hertogh “The Misleading Simplicity of Advance Directive” (2011) 23 International Psychogeriatrics 511 (the author questioned whether advance directive is the answer to the problems it set out to solve); see also A Sommerville “Are Advance directives really the answer? And what was the question?” in Sheila AM McLean Death, Dying and the Law (Dartmouth, Aldershot, 1996) at 40–46; JA Devereux Australian Medical Law (3rd ed, Routledge Cavendish, 2007) at 933–938 who questioned the perceived benefits of advance directive; Christopher Buford “Advancing An Advance Directive Debate” (2008) 22 Bioethics 423.

  111. 111.

    An example is an investigative study which supported the continued use of advance directives in elderly patients who had prepared advance directives received care that was strongly associated with their preferences; see Silveira MJ, Kim SY and Langa KM “Advance directives and outcomes of surrogate decision-making before death” (2010) 362 N Engl J Med 1211; Norman L Cantor “Advance Directive Instruments for End-Of-Life and Health Care Decision Making: Making Advance Directives Meaningful” (1998) 4 Psych Pub Pol and L 629; Jeffrey Blustein “Choosing for Others as Continuing a Life Story: The Problem of Personal Identity Revisited” (1999) 27 Journal of Law, Medicine & Ethics 20; Mark G Kuczewski “Whose Will Is It, Anyway? A Discussion of Advance Directives, Personal Identity, and Consensus in Medical Ethics” (1994) 8 Bioethics 27; Michael Quante “Precedent Autonomy and Personal Identity” (1991) 9 Kennedy Institute of Ethics Journal 365; Peter A Singer “Advance directives: Are they an advance?” (1992) 146 Can Med Assoc J 127.

  112. 112.

    Angela Fagerlin and Carl E Schneider “Enough: The Failure of the Living Will” (2004) Hasting Center Report 30; Rebecca Dresser “Advance Directives Implications for Policy” (Nov.–Dec., 1994) 24 The Hastings Center Report S2-S5; John K Davis “Precedent Autonomy and Subsequent Consent” (June 2004) 7 Ethical Theory and Moral Practice 267; Allen Buchanan “Advance Directives and the Personal Identity Problem” (1988) 17 Philosophy and Public Affairs 277.

  113. 113.

    Henry S Perkins “Controlling Death: The False Promise of Advance Directives” (2007) 147 Annals of Internal Medicine 51; Christopher James Ryan “Betting your life: an argument against certain advance directives” (1996) 22 Journal of Medical Ethics 95; Angus Dawson and Anthony Wrigley “A Dead Proposal: Levi and Green on Advance Directives” (2010) 10 The American Journal of Bioethics 23; Anthony Wrigley “Personal Identity, Autonomy and Advance Statements” (2007) 24 Journal of Applied Philosophy 381; Steven B Hardin and Yasmin A Yusufaly “Difficult End-of-Life Treatment Decisions: Do Other Factors Trump Advance Directives?” (2004) 164 Arch Intern Med 1531.

  114. 114.

    Jeffrey Blustein “Choosing for Others as Continuing a Life Story: The Problem of Personal Identity Revisited” (1999) 27 Journal of Law, Medicine & Ethics 20.

  115. 115.

    David Shoemaker “The Insignificance of Personal Identity for Bioethics” (2010) 24 Bioethics 481.

  116. 116.

    Luis Kutner “Due Process of Euthanasia: The Living Will: A Proposal” (1968–1969) 44 Ind L J 539.

  117. 117.

    Ibid.

  118. 118.

    Ibid., at 541.

  119. 119.

    Luis Kutner “Due Process of Euthanasia: The Living Will: A Proposal” (1968–1969) 44 Ind L J 539 at 542.

  120. 120.

    Ibid., at 543.

  121. 121.

    Ibid., at 550, 551.

  122. 122.

    Ibid., at 547.

  123. 123.

    Ibid., at 550.

  124. 124.

    Ibid., at 549–550.

  125. 125.

    Luis Kutner “The Living Will: Coping with the Historical Event of Death” (1975) 27 Baylor L Rev 39 at 41, 42.

  126. 126.

    Luis Kutner “Due Process of Euthanasia: The Living Will: A Proposal” (1968–1969) 44 Ind L J 539 at 552.

  127. 127.

    Ibid.

  128. 128.

    Ibid., at 553.

  129. 129.

    Ibid.

  130. 130.

    Luis Kutner “The Living Will: Coping with the Historical Event of Death” (1975) 27 Baylor L Rev 39.

  131. 131.

    Nancy M P King Making Sense of Advance Directives (Georgetown University Press, Washington DC, 1996) at 4.

  132. 132.

    Henry S Perkins “Controlling Death: The False Promise of Advance Directives” (2007) 147(1) Annals of Internal Medicine 51; Rebecca Dresser “Advance Directives Implications for Policy” (Nov.–Dec., 1994) 24(6) The Hastings Center Report S2.

  133. 133.

    Stephen Napier “The Minimally Conscious State, the Disability Bias, and the Moral Authority of Advance Directives” (2018) International Journal of Law and Psychiatry. https://doi.org/10.1016/j.ijlp.2018.03.001; Barak Gaster, Eric B. Larson, and J. Randall Curtis “Advance Directives for Dementia: Meeting a Unique Challenge” (2017) 318(22) JAMA 2175; Keydron K Guinn and Charlotte R Winston “Advance directives and individuals with disabilities” (2018) 11 Disability and Health Journal 6; David Limbaugh “Animals, Advance Directives, and Prudence: Should We Let the Cheerfully Demented Die?” (2016) 2(4) Ethics, Medicine, and Public Health 481; Hilde Lindemann “Holding on to Edmund: The relational work of identity” in Lindeman H, Verkerk M, Walker MU (eds) Naturalized Bioethics (Cambridge University Press, Cambridge, 2009); Andrea Ott “Personal Identity and the Moral Authority of Advance Directives” (2009) 4(2) The Pluralist 38; Paul T Menzel “Voluntarily Stopping Eating and Drinking: A Normative Comparison with Refusing Lifesaving Treatment and Advance Directives” (2017) 45 The Journal of Law, Medicine & Ethics 634. https://doi.org/10.1177/1073110517750602.

  134. 134.

    Thomas May “Reassessing the Reliability of Advance Directives” (1997) 6 Cambridge Quarterly of Healthcare Ethics 325; John K Davis “Precedent Autonomy and Subsequent Consent” (Jun., 2004) 7(3) Ethical Theory and Moral Practice 267.

  135. 135.

    Rebecca Dresser “Dworkin on Dementia: Elegant Theory, Questionable Policy” (Nov.–Dec. 1995) 25(6) The Hastings Center Report 32; Rebecca Dresser “At Law: The Conscious Incompetent Patient” (May–Jun., 2002) 32(3) The Hastings Center Report 9.

  136. 136.

    Rebecca Dresser “Advance Directives Implications for Policy” (Nov.–Dec., 1994) 24(6) The Hastings Center Report S2, Angela Fagerlin and Carl E Schneider “Enough: The Failure of the Living Will,” (March–April 2004) 2 Hastings Center Report 30 (although the authors are receptive towards the use of durable power of attorney and reject living wills); John K Davis “Precedent Autonomy and Subsequent Consent Ethical Theory and Moral Practice” (Jun., 2004) 7(3) The Hastings Center 267; Allen Buchanan “Advance Directives and the Personal Identity Problem” (Autumn, 1988) 17(4) Philosophy and Public Affairs 277.

  137. 137.

    Andrea Ott “Personal Identity and the Moral Authority of Advance Directives” (2009) 4(2) The Pluralist 38. Dresser similarly addressed this point earlier in Rebecca Dresser “Dworkin on Dementia: Elegant Theory, Questionable Policy” (Nov.–Dec. 1995) 25(6) The Hastings Center Report 32.

  138. 138.

    Thomas May “Reassessing the Reliability of Advance Directives” (1997) 6 Cambridge Quarterly of Healthcare Ethics 325.

  139. 139.

    Ibid.

  140. 140.

    Ibid.

  141. 141.

    Christopher Tollefsen “Response to ‘Reassessing the Reliability of Advance Directives’ by Thomas May (6(5) CQ Advance Directives and Voluntary Slavery)” (1998) 7 Cambridge Quarterly of Healthcare Ethics 405.

  142. 142.

    Mark R Tonelli “Pulling the Plug on Living Wills: A Critical Analysis of Advance Directives” (1996) 110 Chest 816.

  143. 143.

    Jeffrey Blustein “Choosing for Others as Continuing a Life Story: The Problem of Personal Identity Revisited” (Spring 1999) 27(1) Journal of Law, Medicine & Ethics 20. Some however, held the view that personal identity is immaterial: David Shoemaker “The Insignificance of Personal Identity for Bioethics” (2010) 24(9) Bioethics 481.

  144. 144.

    David Shoemaker “The Insignificance of Personal Identity for Bioethics” (2010) 24(9) Bioethics 481; Mark G Kuczewski “Whose Will Is It, Anyway? A Discussion of Advance Directives, Personal Identity, and Consensus In Medical Ethics” (1994) 8(1) Bioethics 27; Allen Buchanan “Advance Directives and the Personal Identity Problem” (Autumn, 1988) 17(4) Philosophy and Public Affairs 277; although the approach is open to debate: Helga Kuhse “Some Reflections on the Problem of Advance Directives, Personhood, and Personal Identity” (1999) 9(4) Kennedy Institute of Ethics Journal 347 doubted Buchanan’s approach as being questionable.

  145. 145.

    Nancy K Rhoden “The Limits of Legal Objectivity” (1990) 68 NCL Rev 845 at 847.

  146. 146.

    Ibid., at 857.

  147. 147.

    Nancy M P King Making Sense of Advance Directives (Georgetown University Press, Washington DC, 1996) at 88.

  148. 148.

    Ibid.

  149. 149.

    Paul T Menzel “Voluntarily Stopping Eating and Drinking: A Normative Comparison with Refusing Lifesaving Treatment and Advance Directives” (2017) 45 The Journal of Law, Medicine & Ethics 634 at 641. https://doi.org/10.1177/1073110517750602.

  150. 150.

    Ibid.

  151. 151.

    Derek Morgan “Odysseus and the binding directive: only a cautionary tale?” (1994) 14 Legal Stud 411 at 438.

  152. 152.

    For example, the English High Court in Re B (adult: refusal of medical treatment) [2002] EWHC 429 (Fam) expressed that Ms B’s inexperience does not preclude her from refusing further treatment. Except for one English decision, W Healthcare NHS Trust v H and others [2004] EWCA Civ 1324 where the court, as part of the reasoning viewed KH’s inexperience as insufficient to justify the discontinuation of feeding.

  153. 153.

    Angela Fagerlin and Carl E Schneider “Enough: The Failure of the Living Will,” (March–April 2004) 2 Hasting Center Report 30.

  154. 154.

    Nancy M P King Making Sense of Advance Directives (Georgetown University Press, Washington DC, 1996) at 81.

  155. 155.

    Angela Fagerlin and Carl E Schneider “Enough: The Failure of the Living Will” (March-April 2004) 2 Hasting Center Report 30 at 37.

  156. 156.

    Ibid., at 39.

  157. 157.

    Nancy M P King Making Sense of Advance Directives (Georgetown University Press, Washington DC, 1996) at 104.

  158. 158.

    Ibid., at 105.

  159. 159.

    Ibid.

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    Hui Yun Chan

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Chan, H.Y. (2018). The Making of 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_2

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