DOCSLIB.ORG

Choice and Health Care: Fact Or Fallacy

Total Page：16

File Type：pdf, Size：1020Kb

Download full-text PDF Read full-text

Load more

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
Recommended publications
  • The Future of the NHS? Lessons from the Market in Social Care in England

    The Future of the NHS? Lessons from the Market in Social Care in England

    The future of the NHS? Lessons from the market in social care in England October 2013 The Centre for Health and the Public Interest (CHPI) is an independent non-party think tank aiming to set out a vision of health and social care policy based on accountability and the public interest. The Centre’s long term objective is to re-frame the policy debate on health and social care so that it is consistent with the public interest and to ensure that the debate on health and social care policy is more varied, more evidence-based and more open and accessible to citizens. The Authors This report was produced by CHPI’s Executive Management Team (Marianna Fotaki, Sally Ruane and Colin Leys) in consultation with members of our expert contributor network. Marianna Fotaki Sally Ruane Marianna is Professor of Business Ethics in Sally is the Deputy Director of the Health the Warwick Business School, The University Policy Research Unit at De Montfort University, of Warwick. She holds degrees in medicine, Leicester and teaches health policy. She has health policy and planning and a doctorate from published in books, academic journals and the London School of Economics and Political magazines in the UK and Spain and has a Science. Before joining academia Marianna particular interest in the private finance initiative, worked as a medical doctor for Médecins du service configuration and political aspects of the Monde and Médecins sans Frontieres in Turkey, policy process. Iraq and Albania and as the EU resident senior adviser to the governments of Russia, Georgia Colin Leys and Armenia.
  • Download Report

    Download Report

    Essays collected by the All Party Parliamentary Health Group A GUIDED TOUR OF THE NEW NHS Parliamentarians must hold the NHS to account by shining a light on failures and providing a voice for patients and the public. Baroness Cumberlege, APHG Chair Lord Hunt of Kings Heath, APHG Treasurer 4 A guided tour of the new NHS A guided tour of the new NHS 5 A collection of essays produced by the All Party Parliamentary Health Group A collection of essays produced by the All Party Parliamentary Health Group CONTENTS Preface Baroness Cumberlege and Lord Hunt 6 Introduction Dr Jennifer Dixon CBE, Health Foundation 8 Diagram The New NHS 10 NHS England Sir David Nicholson, Chief Executive 12 Monitor Dr David Bennett, Chief Executive 14 Care Quality Commission David Prior, Chair 16 National Institute for Health and Care Excellence Sir Andrew Dillon, Chief Executive 18 Healthwatch England Dr Katherine Rake OBE, Chief Executive 20 Health Education England Professor Ian Cumming, Chief Executive 22 Trust Development Authority David Flory CBE, Chief Executive 24 Parliamentary and Health Service Ombudsman Dame Julie Mellor, Ombudsman 26 Public Health England Duncan Selbie, Chief Executive 28 Clinical Commissioning Groups Dr Amit Bhargava, Chief Clinical Officer, NHS Crawley CCG 30 Health and Wellbeing Boards Councillor Teresa O’Neill, Leader Bexley Council 32 The Association of Directors of Adult Social Services Sandie Keene, President, ADASS 34 Reflections: Have we empowered patients? Jeremy Taylor, Chief Executive, National Voices 36 Reflections: The long
  • Changing of the Guard: Lessons for the New NHS from Departing Health Leaders

    Changing of the Guard: Lessons for the New NHS from Departing Health Leaders

    Changing of the guard: lessons for the new NHS from departing health leaders Edited by Nicholas Timmins Issue 3/March 2013 About this Viewpoint Nuffield Trust Viewpoints provide a platform for UK and international health leaders to explore, discuss and debate critical health care reform issues. Our latest offering comes at a critical time in the reform of the NHS, with the new structures introduced by the Coalition Government about to go live in April 2013. To mark this moment, Nuffield Trust Senior Associate Nick Timmins has interviewed some of the most experienced NHS leaders of the past decade and more to gather their personal experiences and lessons for the new generation of leaders that are about to take the reins. The 12 interviews feature leaders from across the NHS landscape: those leading strategic health authorities and primary care trusts, which are about to be abolished; hospital trusts; and from health regulators. They offer widespread reflections on what it is like to work in the NHS at a senior level, and their collective wisdom offers insights into the challenges faced by NHS leaders during the last decade and into the future. This Viewpoint forms part of the Nuffield Trust’s work programme on NHS reform. Our award-winning website brings together our research and analysis in this area at www.nuffieldtrust.org.uk/our-work/nhs-reform Visit the publication webpage for additional materials related to this Viewpoint, including videos and blogs from the interviewees: www.nuffieldtrust.org.uk/publications/changing-of-the-guard The views expressed are the authors’ own, and do not necessarily represent those of the Nuffield Trust.
  • Ethical Issues

    Ethical Issues

    The collection, linking and use of data in biomedical research and health care: ethical issues Nuffield Council on Bioethics Professor Jonathan Montgomery (Chair) Professor Simon Caney Professor Bobbie Farsides* Professor Peter Furness Professor Ann Gallagher Professor Robin Gill Dr Andy Greenfield Professor Erica Haimes Professor Julian Hughes Sir Roland Jackson Professor Graeme Laurie David K Lawrence Professor Tim Lewens Professor Ottoline Leyser (Deputy Chair) Professor Anneke Lucassen Professor Martin Richards** Dr Tom Shakespeare Dr Geoff Watts Professor Robin A Weiss Professor Heather Widdows Adam Wishart Dr Paquita de Zulueta * co-opted member of the Council while chairing the Working Party on Children and Clinical Research ** co-opted member of the Council while chairing the Working Party on Health and Biological Data: Ethical Issues iii Secretariat Hugh Whittall (Director) Ranveig Svenning Berg Peter Mills Tom Finnegan (until January 2014) Katharine Wright Kate Harvey Catherine Joynson Laura Medhurst Sarah Walker-Robson Carol Perkins Seil Collins Bettina Schmietow (from March 2014) Anna Wilkinson The terms of reference of the Council are: 1. to identify and define ethical questions raised by recent advances in biological and medical research in order to respond to, and to anticipate, public concern; 2. to make arrangements for examining and reporting on such questions with a view to promoting public understanding and discussion; this may lead, where needed, to the formulation of new guidelines by the appropriate regulatory or other body; 3. in the light of the outcome of its work, to publish reports; and to make representations, as the Council may judge appropriate. The Nuffield Council on Bioethics is funded jointly by the Medical Research Council, the Nuffield Foundation, and the Wellcome Trust iv Acknowledgments The Council would like to thank the Working Party for the generous contribution of their time, knowledge and expertise to this project.
  • The Wisdom of the Crowd

    The Wisdom of the Crowd

    Acknowledgements We are hugely grateful to the We would also like to acknowledge the 65 individuals who agreed support of our partners for this initiative: to take part in this publication • We are grateful to PwC, our supporter and contribute their valuable for this publication. PwC provides assurance, tax and advisory services to time and reflections – without the public sector, including a specialist them, this publication would practice in health care. In 2013, PwC not be possible. is working with people across the health service and the public to debate what The publication would also not have the NHS will – and should – look like been possible without the endeavour, in ten years’ time. For more information, determination and trademark speed of see www.pwc.co.uk/nhs75 Nicholas Timmins, who has travelled the length and breadth of the country to interview many of the contributors and bring their thoughts to life in this timely publication. As ever, we are indebted to Nick and look forward to further episodes in 2018 and 2023… We are also grateful to Joanne Allison, Editorial Project Manager, who worked long hours with patience and care to bring the book to fruition. • We are also grateful to Health Service Journal for being our media partner for this publication. In particular, we are grateful to its Editor, Alastair McLellan, for his valuable contributions. THE WISDOM OF THE CROWD 65 views of the NHS at 65 Edited by Nicholas Timmins JULIA CUMBERLEGE STEPHEN DORRELL ANDY BURNHAM PATRICIA HEWITT ARA DaRZI PATRICK JENKIN PARLIAMENtaRIANS