Advance Directives

1. Front Matter

   Pages i-xii

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2. History of Advance Directives and Prerequisites for Validity

   1. Front Matter

      Pages 1-1

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   2. Historical Review of Advance Directives

      • Alfred Simon

      Pages 3-16

   3. Personal Capacity to Anticipate Future Illness and Treatment Preferences

      • Marie-Jo Thiel

      Pages 17-35

   4. Advance Directives in Psychiatry

      • Jochen Vollmann

      Pages 37-49

3. Defining the Scope of Advance Directives

   1. Front Matter

      Pages 51-51

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   2. On the Scope and Limits of Advance Directives and Prospective Autonomy

      • Robert S. Olick

      Pages 53-71

   3. Revocation of Advance Directives

      • Ralf J. Jox

      Pages 73-89

   4. Limitations to the Scope and Binding Force of Advance Directives: The Conflict Between Compulsory Treatment and the Right to Self-Determination

      • Jacqueline M. Atkinson, Jacquie Reilly

      Pages 91-100

   5. Advance Directives in the Context of Imprisonment

      • Bernice S. Elger

      Pages 101-118

4. Effects on Family, Friends and Professional Relations

   1. Front Matter

      Pages 119-119

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   2. Advance Directives and the Physician-Patient Relationship: A Surprising Metamorphosis

      • Mark P. Aulisio

      Pages 121-132

   3. Advance Directives and the Role of Family and Close Persons – Legal Provisions and Challenges

      • Margot Michel

      Pages 133-149

   4. Advance Directives and the Ethos of Good Nursing Care

      • Settimio Monteverde

      Pages 151-166

5. Ethical Challenges

   1. Front Matter

      Pages 167-167

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   2. Advance Directives Between Respect for Patient Autonomy and Paternalism

      • Manuel Trachsel, Christine Mitchell, Nikola Biller-Andorno

      Pages 169-179

   3. The Use of Advance Directives in the Context of Limited Resources for Healthcare

      • Ruth Horn, Ruud ter Meulen

      Pages 181-192

   4. From Legal Documents to Patient-Oriented Processes: The Evolution of Advance Care Planning

      • Tanja Krones, Sohaila Bastami

      Pages 193-200

6. Conclusions

   1. Front Matter

      Pages 201-201

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   2. Concluding Remarks

      • Nikola Biller-Andorno, Susanne Brauer, Peter Lack

      Pages 203-205

This volume gives an overview on the currently debated ethical issues regarding advance directives from an international perspective. It focuses on a wider understanding of the known and widely accepted concept of patient self-determination for future situations. Although advance directives have been widely discussed since the 1980s, the ethical bases of advance directives still remain a matter of heated debates. The book aims to contribute to these controversial debates by integrating fundamental ethical issues on advance directives with practical matters of their implementation. Cultural, national and professional differences in how advance directives are understood by health care professions and by patients, as well as in laws and regulations, are pinpointed.

• Advanced Directives
• advanced care planning
• patient autonomy
• patient decision-making and self-determination
• power of attorney for health care

“Editors Peter Lack, Nikola Biller-Andorno, and Susanne Brauer have put together a wonderful compendium of information in Advance Directives. It is a must for any library that carries information on advance directives and for anyone seeking comprehensive discussion on the topic.” (The Linacre Quarterly, Vol. 85 (3), August, 2018)

From the book reviews:

“Bringing together discussions of history, validity, scope, relationality, and ethical challenges, this edited volume of 13 essays provides a comprehensive and timely examination of advance directives. … Intended for healthcare professionals and scholars, this book may be useful for anyone who deals with advance directives, either in studies or in practice. Students and clinicians whose work includes advance care planning may find this of particular interest.” (Kathryn E. Raliski, Doody’s Book Reviews, October, 2014)

“I found this book, with contributors from Europe, the United States and Great Britain, to be an interesting, informative, and readable review. As all the issues around the validity and implementation of advance directives evolve, I feel that people who work in palliative care have an obligation to be informed, both to promote patient autonomy and to spare some the pain and suffering and cost of futile therapy. This book will help you focus on the issues.” (News Letter – IAHPC book reviews, Vol. 15 (4), April, 2014)

• Department of Moral Theology and Ethics, University of Fribourg, Basel, Switzerland

  Peter Lack

• Institute of Biomedical Ethics, University of Zurich, Zurich, Switzerland

  Nikola Biller-Andorno, Susanne Brauer

Jacqueline M. Atkinson, PhD, CPsychol, is an Honorary Senior Research Fellow in Public Health at the University of Glasgow (UK). Formerly Professor of Mental Health Policy and Chair of the University of Glasgow Research Ethics Committee. Served as an adviser to the Scottish Parliament for the passage of the Mental Health (Care and Treatment) Act through Parliament. Current research interests: mental health law, advance directives in mental health, mental health policy.

 

Mark P. Aulisio, PhD, is Professor of Bioethics at Case Western Reserve University and Director of the Center for Biomedical Ethics, MetroHealth System, Cleveland, Ohio (US). Degree in applied philosophy. Helped to lead three American Society for Bioethics and Humanities projects in the field of ethics consultation training and education and received the ASBH Distinguished Service Award (2009). Current research interests: clinical ethics policy and practice, intersection of bioethics and political philosophy.

 

Sohaila Bastami, Dr med., is a PhD student at the Institute of Biomedical Ethics, University of Zurich (Switzerland). Degree in medicine. Former Fellow at the Division of Medical Ethics, Harvard Medical School (2011–2012). Current research interests: clinical ethics (especially transplantation ethics), research ethics and the interface of evidence-based medicine and ethics.

 

Nikola Biller-Andorno, Professor Dr med. Dr phil., is the Director of the Institute of Biomedical Ethics, University of Zurich (Switzerland). Degrees in medicine and philosophy. Past President of the International Association of Bioethics and member of the Central Ethics Committee of the Swiss Academy of Medical Sciences. Harkness/Careum Fellow and Visiting Professor at Harvard University (2012–2013). Current research interests: interface of ethics, economics, health policy and healthcare practice.

 

Susanne Brauer, PhD, is Director of Studies for bioethics, medicine and life sciences at the Paulus-Akademie Zurich (Switzerland). Degree in philosophy and German literature and linguistics. Affiliated Research Fellow at the Institute of Biomedical Ethics, University of Zurich. Scientific collaborator of the Swiss National Advisory Commission on Biomedical Ethics (2008–2012). Current research interests: medical humanities, intersections between politics, healthcare and life sciences.

 

Bernice Elger, Professor Dr med., MA theol., is Director of the Institute of Biomedical Ethics, University of Basel (Switzerland). Member of the Expert Commission for Human Genetic Testing (GUMEK) and the Federal Commission on Basic Health Care Services and Fundamental Principles (ELGK). Current research interests: ethical issues relating to cutting-edge biotechnology, biobanking and prison medicine.

 

Ruth Horn, PhD, is an Ethics and Society Wellcome Trust Fellow at the Ethox Centre, University of Oxford (UK). Degrees in sociology. Past Marie Curie Fellow (EC) at the Centre for Ethics in Medicine, University of Bristol (UK). Current research interests: sociology of ethics, end-of-life decision-making, advance directives, euthanasia, terminal sedation.

 

Ralf J. Jox, MD, PhD, is Assistant Professor of Medical Ethics at the Institute of Ethics, History and Theory of Medicine, Ludwig Maximilian University of Munich (Germany). Studied medicine at the University of Munich and Harvard Medical School, and philosophy and ethics at the Munich School of Philosophy, the University of Basel (Switzerland) and King’s College London (UK). Caroline Miles Visiting Scholar at the Ethox Centre, University of Oxford (UK) in 2012. Current research interests: patient autonomy, treatment decision-making, advance care planning, neuroethics, vulnerable patients (especially dementia and disorders of consciousness) and clinical ethics consultation.

 

Tanja Krones, PD, Dr med. Dipl. Soz., is a clinical ethicist and director of the Clinical Ethics Committee at Zurich University Hospital (Switzerland). Degrees in medicine, sociology and clinical ethics. Member of the Central Ethics Committee of the Federal Chamber of Physicians and of the German Central Ethics Commission on Stem Cell Research. Head of the German Academy for Ethics in Medicine’s Working Group on Reproductive Biomedicine, and of the German Network for Evidence-Based Medicine’s Working Group on Ethics and EBM. Current research interests: advance care planning, decision aids, shared decision-making, health technology assessment and transplantation.

 

Peter Lack, lic. theol., is a medical ethicist, independent project consultant and scientific collaborator at the University of Fribourg (Switzerland). Chaired the Swiss Academy of Medical Sciences committee responsible for the publication of medical-ethical guidelines on advance directives in 2009. Scientific adviser to the Swiss Red Cross in various projects and services concerning patient self‑determination. Lecturer in medical ethics, patient counselling, physician-patient communication and pastoral psychology (clinical pastoral education).

 

Margot Michel, Dr iur., is a postdoctoral research associate and lecturer in medical law and family law at the Institute of Law, University of Zurich (Switzerland). Serves as legal adviser to the Child and Adult Protection Authority of Canton Zug (Switzerland). Current research interests: medical law, family law, adult and child protection law, property law and animal law.

 

Christine Mitchell, RN, MS, MTS, is Associate Director of Clinical Ethics at the Division of Medical Ethics, Harvard Medical School, and Director of the Office of Ethics at Boston Children’s Hospital. Past President of the American Society of Law, Medicine and Ethics, a founding member of the Society for Bioethics Consultation, and a member of the American Society for Bioethics and Humanities’ Clinical Ethics Consultation Affairs Committee (2010–2013). Current research interests: paediatric ethics and ethics consultation activities.

 

Settimio Monteverde, MME, MAE, lic. theol., is a lecturer in nursing ethics at the Bern University of Applied Sciences (Switzerland). Degrees in medical education, applied ethics and theology, diploma as a registered nurse and nurse anaesthetist. Member of the Central Ethics Committee of the Swiss Academy of Medical Sciences. PhD student (Careum Fellow) at the Institute of Biomedical Ethics, University of Zurich (Switzerland). Current research interests: healthcare ethics education, nursing ethics, ethics of palliative care.

 

Robert S. Olick, JD, PhD, is Associate Professor at the Center for Bioethics and Humanities, SUNY Upstate Medical University, New York (US), where he teaches bioethics and health law for medical and allied health professional students. Previously served as Executive Director of the New Jersey Bioethics Commission. Current research interests: end-of-life decisions, genetic privacy and discrimination, ethics consultation, physician-patient-family relationship, health policy.

 

Jacqueline Reilly, who has a degree in social sciences, is a University Teacher in Public Health at the University of Glasgow School of Medicine. Previously a researcher in public health and social sciences, also at Glasgow. Current research interests: public health policy, risk behaviours and mental health law.

 

Alfred Simon, Dr phil., is Executive Director of the German Academy for Ethics in Medicine, Göttingen (Germany). Degree in philosophy. Chair of the Health Care Ethics Committee of Göttingen University Hospital. Member of the Ethical and Legal Advisory Board of the German Medical Association. Current research interests: clinical ethics, end-of-life decision-making, patient autonomy, advance directives, ethics in psychiatry.

 

Ruud ter Meulen, PhD, a psychologist and ethicist, is Professor of Ethics in Medicine and Director of the Centre for Ethics in Medicine at the University of Bristol (UK). Previously Professor of Philosophy and Medical Ethics and Director of the Institute for Bioethics at the University of Maastricht (the Netherlands). Current research interests: solidarity and justice in healthcare, healthcare reform and health policy, evidence-based medicine, long-term care, research ethics and research ethics committees.

 

Marie-Jo Thiel, Professor Dr med. Dr theol., is Director of the European Centre for the Study and Teaching of Ethics, University of Strasbourg (France). Degrees in medicine, theological ethics and European health policy. Member of the European Group on Ethics in Science and New Technologies. Director of the “Bioethics and Religion” Research Group. Member of the Ethics Committee of the Faculty of Medicine in Strasbourg and of the Ethics Committee of the French Society for Thoracic and Cardiovascular Surgery. Current research interests: interface of ethics, healthcare, bioethics, theological ethics, disability and ageing.

 

Manuel Trachsel, Dr phil., B. Med., is a postdoctoral research associate at the Institute of Biomedical Ethics, University of Zurich (Switzerland). Studied psychology, medicine and philosophy/ethics at the University of Bern (Switzerland). Current research interests: clinical psychology, psychotherapy research, clinical decision-making and end-of-life issues.

 

Jochen Vollmann, Professor Dr med. Dr phil., a psychiatrist and psychotherapist, is Director of the Institute for Medical Ethics and History of Medicine and President of the Centre for Medical Ethics at Ruhr University Bochum (Germany). Current research interests: informed consent and capacity assessment, ethics and psychiatry, advance directives, end-of-life decision-making, personalized medicine, clinical ethics committees and clinical ethics consultation.

 [J1]Note from author: if this is published July 1 or later please leave me listed as Professor. If prior to July 1, list me as Associate Professor. I have been promoted but the promotion does not take effect until July 1.

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