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Choice and Health Care: Fact Or Fallacy

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Choice and Health Care: Fact Or Fallacy Choice and Health Care: Fact or Fallacy A thesis submitted to the University of Manchester for the degree of PhD in Bioethics and Medical Jurisprudence in the Faculty of Humanities 2015 Ingrid Whiteman School of Law Contents ________________________________________________ Abstract…………………………………………………………………………………………..…… 8 Declaration……………………………………………………………………………………...…….. 9 Copyright Statement………………………………………………………………………….……… 9 Acknowledgements……………………………………………………………………………..… 10 The Author…………………………………………………………………………………….……...11 Presentations………………………………………………………………………………….…….. 11 Poster Presentation……………………………………………………………………………….…11 Papers………………………………………………………………………………………………...12 Table of Cases…………………………………………………………………………………….…13 Tables of Statutes…………………………………………………………………………….…….. 15 Table of Statutory Instruments………………………………………………………………….…. 16 Table of EU Directives……………………………………………………………………………... 16 List of Abbreviations…………………………………………………………………………………17 1.0 Chapter 1 – Choice: The Problem………………………………….…………………….…… 19 1.1 Origins of the Research…………………………………………………………….….. 20 1.2 The Scope of the thesis………………………………………………………………... 21 1.3 Brief Historical Context………………………………………………………….……… 24 1.4 Patients, Practitioners and ‘Pundits’…………………………………………….……. 26 1.5 Summary………………………………………………………………………………… 28 2.0 Chapter 2 - Choice: Policy, Legal and Ethical Backgrounds………………………………. 29 2.1 Introduction…………………………………………………………………….………… 29 2 2.2 Policy Themes…………………………………………………………………………... 30 2.3 Legal Themes……………………………………………………………………….…… 33 2.3.1 Choice – Consents and Capacity Matters……………………….……………. 34 2.3.2 Personal Medical Information Management and Choice…………………… 39 2.4 Ethical Themes…………………………………………………………………………. 48 2.4.1 Why is Choice Important to Human Beings? The Principle of Respect for Individual Autonomy…………………………. 48 2.4.2 Beneficence meets Paternalism……………………………………….………. 53 2.4.3 The Private and Confidential Health Record…………………………………. 55 2.5 Conclusions………………………………………………….………………………….. 56 3.0 Chapter 3 - Legal Approaches: Choice, Information Disclosure and Treatment Demands………………………………………………………… 58 3.1 Introduction and Background…………………………………………………….……. 58 3.2 Choice – Consent and Demand; Can We Have It Every Which Way? …………... 59 3.2.1 Choice and Information Disclosure: Moving Away from Sidaway?.............. 61 3.2.2 Does Montgomery Finally Affirm Choice? Or Demand?............................ 65 3.2.3 Choice and Treatment Demands…………………………….………………... 71 3.2.4 Blurring the Boundaries: When Right To Refuse May Be Right To Demand………………………………………………………….. 74 3.2.5 Resources, Choice and Access to Treatments………………….…………… 75 3.2.5.1 Access Abroad……………………………………….………………. 76 3.2.5.2 Access to Treatment and NHS Funding………….……………….. 77 3.3 Conclusions…………………………………………………………………………….. 80 4.0 Chapter 4 – Choice: Political and Philosophical Approaches………..……….………….. 83 4.1 Introduction………………………………………………….………………………….. 83 3 4.2 Patient Choice and the Body Politic………………………………………………….. 83 4.2.1 A Note on Other Key Players………………………………………………….. 89 4.2.1.1 The Health Care Practitioner………………………………………. 89 4.2.1.2 The Organisation: The NHS……………………………………….. 90 4.3 Autonomy and the Patient – Pertinent Principles and Philosophical Approaches.. 91 4.3.1 A Return to Autonomy……………………………………………………….…. 92 4.3.1.1 The Importance of the Ethical Principle of Respect for Individual Autonomy……………………………………………….. 92 4.3.1.2 What is the Importance of Choice in Ethical and Philosophical Traditions?..................................................... 93 4.3.2 Is Choice in Health Care Enhancing Autonomy?........................................ 95 4.3.3 Diminishing Choice as Autonomy in Health Care?.................................... 98 4.4 Conclusions…………………………………………………………………………….. 100 5.0 Chapter 5 - Choice: Research Questions and an Introduction to the Papers………….. 102 5.1 Re-Setting the Scene…………………………………………………………………. 102 5.2 The First Paper………………………………………………………………………… 104 5.3 The Second Paper…………………………………………………………………….. 105 5.4 The Third Paper……………………………………………………………………….. 107 6.0 Chapter 6 - Paper 1 - The Fallacy of Choice in the Common Law and NHS Policy…… 110 6.1 Abstract……………………………………………………………………………….… 110 6.2 Keywords………………………………………………………………………………. 110 6.3 Introduction…………………………………………………………………………….. 111 6.4 Choice: Definitions and Associations……………………………………………….. 112 6.5 Choice: The Law in England……………………………………………………….… 116 6.5.1 My Choice is to Accept the Treatment on Offer………………………….… 117 4 6.5.2 Lack of Choice Equals Harm?................................................................... 121 6.5.3 My Choice is to Decline the Treatment on Offer…………………………… 124 6.5.4 My Choice is to Demand Treatment that is Available but not on Offer….. 127 6.6 Choice and the English NHS………………………………………………………… 131 6.7 Choice: Practitioner Perspectives and the General Medical Council (GMC)……. 137 6.8 Choice: Conclusions………………………………………………………………….. 140 6.9 Acknowledgements…………………………………………………………………… 142 7.0 Chapter 7 - Paper 2 -The Decline of Medical Confidentiality…………………………….. 143 Medical Information Management: The Illusion of Patient Choice 7.1 Abstract……………………………………………………………………………….... 143 7.2 Keywords…………………………………………………………………………….… 143 7.3 Introduction……………………………………………………………………….……. 144 7.4 Perception and Protection in Information Management………………….……….. 147 7.4.1 Problems of Interpretation………………………………………………….…. 147 7.4.2 Confidentiality – Traditional Legal Analysis………………………………….. 148 7.4.3 The Place of Statute…………………………………………………….…….. 154 7.4.4 Paternalistic ‘Friend’, Fiduciary but, now Technician?.............................. 159 7.5 Concluding Remarks……………………………………………………………….…. 163 7.6 Acknowledgements…………………………………………………………….……… 165 7.7 Author Biography……………………………………………………………………… 165 8.0 Chapter 8 - Paper 3 - Medical Privacy: Health Professionals and Ministers…………… 166 8.1 Abstract………………………………………………………………………………… 166 8.2 Keywords………………………………………………………………………………. 166 8.3 Introduction………………………………………………………………………….…. 167 5 8.4 For Some More (Choice) is Less…………………………………………………….. 171 8.4.1 Setting the Scene……………………………………………………………… 171 8.4.2 The Politic Body – Past and Present…………………………………………. 172 8.4.3 The Assorted Shades of Confidentiality – Do Doctors Have Less Choice?............................................................. 176 8.5 Duty to Disclose – The Public have an Interest……………………………….…… 179 8.5.1 The Law Applied: Doctors and Minsters…………………………….………. 179 8.6 Duty to Disclose – in the Public Interest – The Facts of the Matter…………..…. 185 8.7 Conclusions……………………………………………………………………….….….188 8.8 Acknowledgements…………………………………………………………….……….189 9.0 Chapter 9 – Choice: Conclusions………………………………………………..………..…. 190 9.1 Introduction……………………………………………………………………….….... 190 9.1.1 The Growth of the Choice Agenda……………………………………..…..….191 9.1.2 Ethics and Choice………………………………………………………….….. 192 9.1.3 Choice Talk………………………………..…………………………….……….193 9.1.4 Choice Law…………..…………………………………………………….…… 193 9.1.5 Choice and the ‘Consumer’………………………………………………..…. 195 9.1.5.1 Choice: Consents and Demands…………………………….……. 195 9.1.5.2 Choice: Managing Confidentiality Matters………………….…….. 195 9.1.5.3 Choice and the Chosen Few………………………….……….……196 9.2 Choice: Fact or Fallacy........................................................................................ 197 9.2.1 Processes Needed…………………………………………………….……….. 197 9.2.2 Outcomes…………………………………………………………….…………. 198 9.3 What Next for Choice?......................................................................................... 198 6 9.3.1 A New Agenda for Choice, by Research…………………………..……….. 199 9.4 Errors of Commission……………………………………………………………...… 200 9.5 Concluding Remarks……………………………………………………………..….. 201 BIBLIOGRAPHY…………………………………………………………………………………..…. 202 APPENDIX……………………………………………………………………………………………. 227 The Published Papers Word count of main text including footnotes: 69,205 7 Abstract The University of Manchester Doctoral Programme in Bioethics and Medical Jurisprudence Ingrid Ann Whiteman 5th October 2015 Choice and Health Care: Fact or Fallacy This thesis sets out to examine the place of patient choice in English health care, primarily within the National Health Service and in relationship to English law with regard to (a) informed consents and information and risk disclosure, and (b) confidentiality and privacy in relation to the access to and management of patient information. The analysis in underpinned with a limited review of the associations between choice and respect for individual autonomy. Health policy rhetoric has been laden with references to pro-patient choice in recent years and yet this research re-affirms that in law (still) it is the negative patient choice that carries weight in matters of consent to treatment. There is (still) no place for real demand. Similarly, in individual medical information access and management there is no sanction for demand, even negative patient choice is bounded. In both aspects of health care the ‘choices’ are (rightly) limited and can hardly constitute choice as the consumer-patient might see it. What the three papers contribute is the recognition that restrictions in patient choice are necessary; to be supported and for some individuals should be even more fettered than that of the general public in the interest of that general public. The papers examine the language of choice and find it lacking in transparency, with the reality dissociated from patient engagement, information dissemination and shared decision
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