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Seminar 3: Legal and professional responses to advance decision-making II

Date: 14 - 15 December 2015
Location: Liberty Building, University of Leeds

This seminar will consider the regulation of advance decisions and professional responses thereto, together with a consideration of the impact of physician attitudes upon the implementation of advance decisions.

Presentations

Peter Bartlett "Advance Decisions under the Mental Capacity Act 2005 in Cases of Bipolar Disorder"

Sander Welie "Advance directives in the Netherlands: legal framework and some considerations"

Samantha Halliday “Conceiving Better Birth Plans: Mental Illness, Pregnancy and Court Authorised Obstetric Intervention"

Jörg Richter "Doctors’ attitudes towards patient autonomy in end-of-life decisions – a comparative literature review from Germany, Italy, the Netherlands, and the UK"

Programme

This seminar will consider the regulation of advance decisions and professional responses thereto, together with a consideration of the impact of physician attitudes upon the implementation of advance decisions.

Monday 14th December 2015

14.00
Welcome, opening remarks and introductions, followed by:
Peter Bartlett "Advance Decisions under the Mental Capacity Act 2005 in Cases of Bipolar Disorder"
Followed by time for discussion and questions.

15.15

Coffee break

15.30
Sander Welie "Advance directives in the Netherlands: legal framework and some considerations"
Followed by time for discussion and questions.

16.30

Round table discussion, vignette: the brain-dead pregnant woman and the advance directive.

17.00

Closing remarks.

Tuesday 15th December 2015

09.30
Welcome, opening remarks and introductions.

09:45
Sam Halliday “Conceiving Better Birth Plans: Mental Illness, Pregnancy and Court Authorised Obstetric Intervention"
Followed by time for discussion and questions.

10.45
Coffee break

11.00
José Antonio Seoane "Healthcare advance decision-making in Spain"
Followed by time for discussion and questions.

12.00
Lunch.

13.30
Jörg Richter "Doctors’ attitudes towards patient autonomy in end-of-life decisions – a comparative literature review from Germany, Italy, the Netherlands, and the UK"
Followed by time for discussion and questions

15.00
Closing remarks.

Speakers

Peter Bartlett

Samantha Halliday

Samantha Halliday is an Associate Professor in Law at the University of Leeds, United Kingdom, and the principle investigator for the ESRC research seminar series “Towards a European understanding of advance decision-making: a comparative, interdisciplinary approach.” Her primary research interests are in comparative medical ethics and the law, especially in relation to the beginning and end of life, with a focus upon European comparisons. Sam has published widely in this field and has held grants from the both the Wellcome Trust and the Modern Law Review relating to mental capacity and end of life decision-making.   Recent publications relating to anticipatory decision making include:

  • S. Halliday S, ‘Comparative reflections upon the Assisted Dying Bill 2013: a plea for a more European approach’ (2013) 13 Medical Law International 135-167

DOI: 10.1177/09685332135081292
Repository URL: http://eprints.whiterose.ac.uk/76573/

  • S. Halliday, ‘Legislating to give effect to precedent autonomy: comparative reflections on legislative incompetence’ (2011) 11 Medical Law International 127-171

DOI: 10.1177/0968533211011002024
Repository URL: http://eprints.whiterose.ac.uk/76574/

Her monograph Autonomy and Pregnancy: A comparative analysis of compelled obstetric intervention will be published by Routledge in 2016 (goo.gl/lUiERC).

Jörg Richter

José Antonio Seoane

José Antonio Seoane is Associate Professor of Philosophy of Law at the University of A Coruña (Spain) and coordinator of the research group Philosophy, Constitution, and Rationality (http://www.filosofiaderechocoruna.es/en). He teaches Legal Philosophy, Health Law and Bioethics at the School of Law and the School of Health Sciences at the University of A Coruña.

His main research interests are the transformation of modern legal systems; bioethics, argumentation and human rights; justice and disability; end of life decision-making; conscientious objection; confidentiality and health data; type and practical reason.

In 2011 he was awarded the VII Prize Derecho y Salud (Spanish Association of Health Law) for the best academic work in Health Law: Law and advance directives.

He is a member of Ethical Commission of the Provincial Council of Physicians-A Coruña and of the Advisory Council of Galician Public Health System (official appointment by the Regional Government).

Sander Welie

Sander P.K. Welie is lawyer at the Dutch National Foundation of Patient Advocates in Mental Health Care, in Utrecht, The Netherlands. He studied law at the University of Maastricht (JD), and psychology and philosophy at the Catholic Radboud University Nijmegen (MPsy). In 2008 he completed his PhD on criteria for the assessment of patient competence. He has participated in several European research projects and taught courses in law and/or ethics at both undergraduate and postgraduate levels. He has acted as a reviewer or editorial staff member of a number of journals, and has served as a member or chair of ethics committees and statutory complaint committees. Also, he has advised organisations and institutions in matters regarding health law and ethics. His professional interests relate to issues at the intersection of philosophy, law and psychology.

Participants

Marion Albers

Lehrstuhl für Öffentliches Recht, Informations- und Kommunikationsrecht, Gesundheitsrecht und Rechtstheorie, Fakultät für Rechtswissenschaft, Universität Hamburg
marion.albers@jura.uni-hamburg.de

Jacqueline Atkinson

Professor of Mental Health Policy at the University of Glasgow
Jacqueline.Atkinson@glasgow.ac.uk

Peter Bartlett

Nottinghamshire Healthcare NHS Trust Professor of Mental Health Law, University of Nottingham
Peter.Bartlett@nottingham.ac.uk

Marike de Boer

Researcher, EMGO Institute for Health and Care Research, VU University Medical Center.
m.deboer@vumc.nl

Louise Bramley

PhD student, University of Nottingham
Louise.Bramley@nottingham.ac.uk

Sharon Burton

GMC Head of Policy, Standards and Ethics
sburton@gmc-uk.org

Martin Eisemann

Professor of Psychology University of Tromsø
martin.eisemann@uit.no

Chris Gastmans

Professor of Medical Ethics President, European Association of Centres of Medical Ethics KU Leuven
Chris.Gastmans@med.kuleuven.be

Samantha Halliday

Associate Professor of Law, University of Leeds
S.Halliday@leeds.ac.uk

Gillian Hundt

Professor of Social Science in Health, University of Warwick
Gillian.Hundt@warwick.ac.uk

Kirstin Jalink

PhD student, VU University Medical Center
k.jalink@vumc.nl

Arnd May

Zentrum für Angewandte Ethik
may@EthikZentrum.de

Alex Pearl

PhD student, School of Law, University of Leeds
A.Pearl@leeds.ac.uk

Andrea Prescott

Court of Protection and Community Care Solicitor Cartwright King Solicitors, Leeds.
Andrea.prescott@cartwrightking.co.uk

Jörg Richter

Professor of psychology, Universität Rostock, SL University of Hull
j.richter@hull.ac.uk

Kevin de Sabbata

PhD student, School of Law, University of Leeds
lwkds@leeds.ac.uk

José Antonio Seoane

Profesor Titular de Filosofía del Derecho, Facultad de Derecho, Universidade da Coruña, Spain.
jaseoane@udc.es

Sander Welie

Lawyer, Dutch National Foundation of Patient Advocates in Mental Health Care
S.Welie@pvp.nl

Abstracts

Advance Decisions under the Mental Capacity Act 2005 in Cases of Bipolar Disorder

Peter Bartlett

This presentation will report the findings of a survey of 549 people diagnosed with bipolar disorder and 650 psychiatrists on their experiences of advance planning under the Mental Capacity Act 2005. Consistent with other studies, few of the service users surveyed had used these advance planning mechanisms, primarily because of a lack of awareness. Of those that did, most advance planning was limited to informal discussions regarding property and affairs, often not reduced to writing. Notwithstanding encouragement both in NICE guidance for the treatment of bipolar disorder and the Mental Health Act Code of Practice, fewer than one in ten service user respondents had made advance decisions regarding their treatment. Further, the legal effects of the various advance planning mechanisms were not well understood.

The study forms part of the PARADES programme on bipolar disorder, funded by the NIHR (Reference Number RP-PG-0407-10389).

Advance directives in the Netherlands: the legal framework and some considerations

Sander Welie

The aim of protecting and promoting patient autonomy has led to legal regulations in the Netherlands recognising the possibility of advance directives. By means of such directives patients can act as representatives for themselves; that is, when competent, they formulate their preferences, wishes and decisions to be acted upon in case of future incompetence.

Dutch law recognises different kinds of advance directives. One kind takes the form of a power of attorney, authorising a person to act as a proxy on behalf of the patient. Another form, the living will, enables patients directly to lay down their decisions for specific situations. In Dutch statutory regulations relating to health care, three types of living wills can be distinguished. The first is the treatment refusal declaration, the second the euthanasia declaration and the third the self-binding declaration, created for the field of psychiatry.

Beside the above-mentioned statutory advance directives, there are several advance declarations that do not have an explicit statutory basis. Among these is the Dutch Patient Association's (NPV) desire to live declaration. Through the publication of this declaration, the NPV seeks to counterbalance the tendency in the Netherlands to regard termination of life as a suitable way of dealing with suffering. One further example of a non-statutory declaration is the so-called life will, developed by the Association of Notarial Estate Planners (EPN). This life will is meant as a practical format for an integrated power of attorney, addressing diverse matters like medical decisions, financial affairs, one’s own company’s interests and the care of pets.

Advance directives may increase the chances of surrogate decision-makers’ acting in accordance with the patient’s wishes. However, they are not a panacea for all the problems associated with advance care planning and may even give rise to new problems. There is a risk of directives engendering the illusion of control. This paper will assess the merits of the three forms of living wills, and consider whether more thought should be given to the differentiation of care supply, in combination with an advance choice for a specific care provider whose approach of care broadly matches the patient’s preferences, values and norms.

Conceiving Better Birth Plans: Mental Illness, Pregnancy and Court Authorised Obstetric Intervention

Samantha Halliday

After a lull of ten years, during the last two years at least ten women have been subjected to a caesarean after the court found such treatment to be in her best interests. In the majority of those cases the women concerned were suffering from a mental illness. The latest cases reflect the difficulty in achieving an appropriate balance between treating the woman’s disorder and protecting the embryo and foetus from harm given that no psychotropic drugs are licensed for use during pregnancy. Such a balance needs to be sought on an individual basis and will often be extremely difficult to achieve, resulting in higher relapse rates than usual and increasing the likelihood that the affected women will be considered no longer to have the capacity to make decisions for themselves as birth approaches.

The paper will analyse the assessment of a best interests in the latest tranche of cases, focussing upon the centrality of the achievement of a successful delivery within that assessment and the notion that a safe delivery will negate any harm suffered. It will be argued that more thought needs to be given to how such cases can best be managed, in such a way as to facilitate the woman’s ability to make decisions. It will be suggested that positive steps should be taken to facilitate anticipatory decision-making, ensuring that her wishes, rather than her welfare, or indeed that of the foetus, are prioritised. To that end it is argued that much greater use needs to be made of advance directives for obstetric care (as opposed to the more aspirational birth plan), enabling a woman to set out her wishes at a time where there can be no question of her lacking capacity, where there is no stress, pain or emergency situation detracting from a calm discussion of the available options. Indeed, the very process of drawing up such a decision will stimulate dialogue between the woman and her healthcare professional about potential problematic situations and how they could be managed. Whilst standard form birth plans are susceptible to the charge of institutionalisation and of providing only the illusion of choice, an advance directive for obstetric care should be regarded in exactly the same way as other advance decisions and holds out significant potential to facilitate the making of autonomous decisions, particularly in the case of women with a (history of) mental illness.

Healthcare Advance Decision-Making in Spain

José Antonio Seoane

The recognition and protection of patient’s autonomy and rights are assured in Spain. Informed consent first and then advance directives have played a major role in updating the clinical practice and the doctor-patient relationship through a manifold national and regional legislation mainly addressed to end-of-life issues.

Notwithstanding the difficulty of a uniform interpretation of such a huge normative body, a common core of healthcare advance decision-making can be defined.

Some conceptual clarifications are firstly required in order to prevent misunderstandings and misuses of advance directives. Three issues are of special concern: 1) the difference between the Spanish legal concept and the original North American one, as well as the eventual differences between the ethical approach and the legal one; 2) the serial order of the three settings for healthcare patient decision-making; and 3) the meaning and functions of the healthcare proxy appointed in the advance directives document.

What a patient can decide in his/her advance directives is to be answered describing the open set of current legal contents and critically assessing their limits, since some of them, namely medical ethics and conscientious objection, have been wrongly considered as limits for applying advance directives.

Formal and procedural requirements are also at stake, since there are different legal solutions and particularly since the compliance with these requirements is a condition of validity and efficacy.

Closely connected with validity and efficacy is the normative scope of advance directives. Should be left little room, if any, for healthcare professionals’ interpretation of advance directives before implementing them? How binding are legally issued advance directives in clinical practice? These two and other controversial issues can be answered from the updated ethical and legal approach to doctor-patient relationship.

Although Spain has less experience than other countries in this sphere, advance directives are not the only answer for advance care planning and healthcare advance decision-making. Therefore, the paper shows other available tools and legal institutions –e.g. self-guardianship or preventive powers of attorney– and explains the similarities and differences among them.

It can be concluded that advance directives and other anticipatory decision-making tools represent a step forward in the consolidation of patient autonomy as a key element of doctor-patient relationship and improve quality and justice of Spanish healthcare system. Nevertheless, the comprehensive existing legal regulation and the actual clinical practice do not suffice, and some legal, ethical and clinical challenges remain.

This presentation is a result of the research project "The discourse of biorights. Philosophical and legal foundations, features and implementation" (reference number DER2014-52811-P), funded by the Spanish Ministry of Economy and Competitiveness.

Doctors' Attitudes Towards Patient Autonomy in End-of-Life Decisions: A Comparative Literature Review from Germany, Italy, the Netherlands and the UK

Jörg Richter

A common feature in each jurisdiction, is the key role attributed to doctors in assessing and implementing a patient’s advance decision. That being the case, doctors’ attitudes towards patient autonomy are of crucial importance. The law relating to advance decision-making, as well as its cultural background, varies significantly between Germany, Italy, the Netherlands, and the UK, raising the question of whether these differences are reflected by doctors’ attitudes? For example, at the end of the twentieth century empirical findings suggested that Russian and German doctors more often and stronger paternalistic attitudes in Russian and German doctors compared to Swedish doctors. Taking the development of the position of doctors in many countries within the healthcare systems from a healing profession towards a service providing profession into account, an attitude change should have happened. The relevant scientific literature from the last twenty years that reports empirical data on doctors’ attitudes towards patient autonomy in end-of-life decisions from Germany, Italy, the
Netherlands, and the UK will be reviewed and comparatively analysed.