Towards a European understanding of advance decision-making: a comparative, interdisciplinary approach.

Lead Research Organisation: University of Huddersfield
Department Name: Business School

Abstract

The principle of patient autonomy emphasises respect for the patient as an individual, rather than as an object of concern; attempts to promote precedent autonomy aim to extend that respect to those no longer capable of exercising autonomy and so to prioritise the patient's wishes over her welfare as assessed by third parties. Advance decisions/directives (ADs) enable individuals to make choices during times of capacity that will take effect in the future when the individual lacks the capacity to make a contemporaneous decision. Advance medical decision-making occurs in a range of situations, encompassing decisions relating to end-of-life treatment, typically focussed upon refusals of life-sustaining treatment; ADs concerning physical health care unrelated to end of life care, including for example birth plans which typically include positive requests for treatments (e.g. an epidural) as well as refusals of treatment; and ADs relating to psychiatric treatment, where individuals with severe mental illness set out their treatment preferences. In each of these situations an AD can act as an important mechanism for conveying precedent autonomy, bridging the occurrence of incapacity and providing a clear statement of how the patient wants to be treated, or more usually what treatment the patient does not wish to be given.

Anticipatory decision-making offers great promise and could make a substantial contribution to the empowerment of those lacking capacity, but there are important asymmetries between anticipatory and contemporaneous decision-making that could potentially undermine both the legal and moral authority of an AD. An AD is a mono-directional form of communication that takes effect only once the patient lacks capacity and is therefore no longer able to discuss alternative treatment and care options, to clarify her wishes, or potentially to rescind her previously expressed wishes. Significant problems occur because, unlike contemporaneous decisions, ADs are intended to take effect at a future time when the range of treatment scenarios and treatment that will be available may have changed, or the individual's interests may be radically and unforeseeably different from those anticipated. Moreover, practical problems may arise, including how to ensure that the AD was voluntary and that the individual had the requisite capacity to make it. Such problems are inextricably linked to the temporal and psychological distance that separates the AD from the time at which it should be implemented, but ADs also call into question the interplay between society's interest in upholding the sanctity of life and the patient's right to self-determination. As a result, ADs are usually subjected to stringent validity and applicability requirements, requirements that typically give significant discretion to the healthcare professional charged with implementing the AD to determine whether or not the AD is binding in the treatment scenario that occurs.

The Council of Europe's Convention on Human Rights and Biomedicine (1997) requires that account is taken of a patient's previously expressed wishes (Article 9), demanding at least a minimal consideration of precedent autonomy. A number of European jurisdictions have gone further, seeking to clarify the standing of ADs and to promote legal certainty by providing statutory recognition of the importance and binding nature of at least some ADs.

This seminar series will consider a range of European legislative responses to anticipatory decision-making, seeking to explore those responses within the practical contexts within which advance decision-making occurs. It will link legal discourse with policy and practice discourses, and consider how a shared understanding of the purpose and potential for anticipatory decision-making may facilitate the drafting of ADs that both reflect the author's intentions and are likely to be capable of implementation by healthcare professionals at a later date.

Planned Impact

This seminar series seeks to promote and support high quality research and to encourage a more critical and constructive assessment of advance decision-making. The research will have an important impact at a number of different levels, going from the macro- to the micro-level, in a number of different fields and jurisdictions. It will contribute to knowledge, both within the UK and at a European level by providing a forum for debate and dialogue between academics, policy makers, mental health practitioners and representatives of patient advocacy groups concerned with mental health issues from a number of European jurisdictions, enabling the evaluation of advance decision-making in its legal, practical and social contexts. The multi-perspective dialogue and the comparative analysis of anticipatory decision-making generated will be extremely relevant at both a national and an international (European) level, informing policymakers (at both a national and international level, for example institutions such as the Council of Europe); advocacy groups; health service planners, health professionals and managers; and social scientists working in the health field.
This proposal has been developed with input from Dianne Gove (Director for Projects) and Jean Georges (Executive Director) of Alzheimer Europe. Alzheimer Europe will be involved in the planning of the seminars and will participate in each seminar, as well as chairing the seminar devoted to examining advance decisions and dementia. We will also invite representation from the Mental Disability Advocacy Centre, the Picker Institute Europe (patient centred care) and open up the seminars to users and carers through UNTRAP, the Warwick University User Partnership in Research and Teaching. The involvement of representatives of key stakeholders throughout the series will ensure that the seminars tackle pertinent issues.
The research presented at the seminars and the ensuing dialogue will be of great interest to patient advocacy groups, patients and their carers, and healthcare professionals as this research will impact upon their understanding of the issues raised by anticipatory decision-making, the challenges involved in drafting an advance decision more likely to be capable of implementation and the need for better communication in care planning. The research will enhance quality of life and health care planning, promoting and facilitating precedent autonomy by developing guidance and FAQs relating to advance decision-making for patients, carers and healthcare professionals . This information will be maintained on the series' website.
The research will impact upon practice and policy-making forums. By investigating the potential disconnect between legislative policy (to promote precedent autonomy) and implementation practices the research will contribute towards evidence based policy-making and influencing public policies and legislation at a local, regional, national and international level. Members of the professional bodies (such as the British General Medical Council and the German Bundesärztekammer) and relevant government departments (including for example the Department of Health and the Austrian Ministry of Health) will be invited to participate in the series and feedback will be given regarding the congruence of professional guidance and the law. We will approach MEPs with a view to hosting one of the seminars in Brussels, with the aim of engaging EU policymakers and will produce a European policy briefing. Through these briefings we will seek to improve the effectiveness of public services.
The research will influence and inform healthcare and legal practitioners by providing guidance as to the requirements of professional practice and of the legal effect of advance decisions.
It will also contribute to increasing public awareness and understanding of the potential uses of advance decisions through the provision of guidance and FAQs on the series' website.

Related Projects

Project Reference Relationship Related To Start End Award Value
ES/M002659/1 06/10/2014 07/01/2018 £30,489
ES/M002659/2 Transfer ES/M002659/1 21/03/2018 13/09/2018 £4,455
 
Description There are multiple understandings of advance decisions, the purpose and use thereof.

Whilst at a policy level there is considerable emphasis upon patient choice and the importance of planning for incapacity, often healthcare professionals lack the time to assist patients to engage in advance care planning at a more general level, may not wish to engage in the difficult conversations this may involve and may be uncertain about the impact of advance decisions as a legally binding tool to refuse treatment.

Awareness of individuals about the opportunity of advance planning in the form of advance decisions is quite limited, unless they have a specific diagnosis that means they are likely to lack capacity in the future, for example in the case of MND due to an inability to communicate. Multiple sources of information are available from multiple organisations, but each have their own emphasis and their own forms - this can prove confusing. There is also a reluctance to plan for the future in the broader sense of advance care planning in some cases as individuals feel that they should be able to respond to events as they occur.

Across Europe the same issues arise in relation to validity and applicability of advance decisions, but different mechanisms have been used to resolve common problems. For example, in Germany the advance decision is coupled with the use of a proxy decision-maker, in Austria a mandatory capacity assessment ensures that no question arises at the time of implementation about the question of whether the individual had capacity at the time of drafting their advance decision.
Exploitation Route Work is needed to further develop a common understanding of advance decisions that brings together policy makers, professionals and third sector organisations to develop a common voice regarding the opportunity and meaning of advance decisions. Collaboration in creating information and educating both the public and professional audiences about advance decision-making to enhance knowledge and awareness continues to be necessary.
Sectors Healthcare,Government, Democracy and Justice

URL https://eadm.leeds.ac.uk
 
Description The research has had an impact at a number of different levels, and that impact is still evolving. It contributed to knowledge both within the UK and at a European level by providing a forum for debate and dialogue between academics, policy makers, health practitioners and representatives of patient advocacy groups enabling the evaluation of advance decision-making in its legal, practical and social contexts. The results of our research were presented to stakeholders at a workshop 'European Understandings of Advance Decision-Making - Implications for Policy and Research' on 10 September 2018 at the Wellcome Collection, London. The event was well attended with representatives from policy makers such as MPs, including members of the All-Party Parliamentary Group on Dementia, the General Medical Council and the British Medical Association. Representatives from the Faculty of Intensive Care Medicine, the European Association for Palliative Care and the Royal College of Midwives attended, together with representatives from organisations such as Compassion in Dying, Age UK, MIND and Macmillan. The key findings were discussed and ways forward were discussed, as well as how advance decision-making could be better promoted and located within healthcare delivery. In this way the research has impacted upon practice and policy-making forums. Participants submitted evidence to the Ministry of Justice's call for evidence "Revising the Mental Capacity Act 2005 Code of Practice," 2019. The outcome is not yet known. Similarly, outreach activities at a local level, public lectures concerning the use of advance decisions have increased awareness of advance decisions in the lay public, whilst discussions with hospice and palliative care consultants has identified both that further training is needed in dealing with advance decisions, but also has reassured health care providers about the effect of an advance decision. Further activities are planned to increase engagement by both individuals and health care professionals. Key findings will be published in a special issue of Medical Law International during 2019. This special issue brings together contributions from healthcare practitioners and academics. The public face of the project is the project website (https://eadm.leeds.ac.uk). This publicised events and offered a route for people to contact the researchers and to find information to assist them in drafting, or implementing advance decisions. Funded PhD student places made a significant contribution to the training of doctoral students, providing an opportunity for them to network with some of the leading scholars in the field. 2 of the contributions in the special issue of Medical Law International have been authored by funded PhD students.
First Year Of Impact 2018
Sector Healthcare,Government, Democracy and Justice
Impact Types Policy & public services

 
Description Catherine Stanbury, University of Huddersfield: "What does a lawyer know about my medical needs? Exploring the role of the lawyer in preparing a modern Lasting Power of Attorney for Health and Welfare", at workshop European Understandings of Advance Decision-Making - Implications for Policy and Research 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Policymakers/politicians
Results and Impact 36 stakeholders attended this workshop designed to feed back on our key findings from the seminar series. Attendes included Members of Parliament, members of professional bodies (including GMC, BMA, Faculty of Intensive Care Medicine, Royal College of Medicine), third sector organisations (including MIND, Compassion in Dying, Alzheimers' Society and Motor Neurone Disease Association.) Papers were given presenting our key findings and were followed by questions and discussion. Briefing papers are being prepared on each paper and will be hosted on the series website.
Year(s) Of Engagement Activity 2018
URL https://eadm.leeds.ac.uk/stakeholder-event-european-understandings-of-advance-decision-making/
 
Description Contribution to consultation: Revising the Mental Capacity Act 2005 Code of Practice by S. Halliday & J. McHale 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact Response to Ministry of Justice consultation Revising the Mental Capacity Act 2005 Code of Practice: Call for evidence
Year(s) Of Engagement Activity 2019
URL https://www.gov.uk/government/consultations/revising-the-mental-capacity-act-2005-code-of-practice-c...
 
Description Convened workshop European Understandings of Advance Decision-Making - Implications for Policy and Research 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Policymakers/politicians
Results and Impact 36 stakeholders attended this workshop designed to feed back on our key findings from the seminar series. Attendes included Members of Parliament, members of professional bodies (including GMC, BMA, Faculty of Intensive Care Medicine, Royal College of Medicine), third sector organisations (including MIND, Compassion in Dying, Alzheimers' Society and Motor Neurone Disease Association.) Papers were given presenting our key findings and were followed by questions and discussion.

Briefing papers are being prepared on each paper and will be hosted on the series website.
Year(s) Of Engagement Activity 2018
URL https://eadm.leeds.ac.uk/stakeholder-event-european-understandings-of-advance-decision-making/
 
Description Dr Andreas Dimopoulou 'Advance Directives, Intellectual Disability, and Universal Legal Capacity: An Inconsistency of Approach?', presented to Stakeholder and Policymaker Workshop: European Understandings of Advance Decision-Making - Implications for Policy and Research, Wellcome Foundation, London: 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Policymakers/politicians
Results and Impact 36 stakeholders attended this workshop designed to feed back on our key findings from the seminar series. Attendes included Members of Parliament, members of professional bodies (including GMC, BMA, Faculty of Intensive Care Medicine, Royal College of Medicine), third sector organisations (including MIND, Compassion in Dying, Alzheimers' Society and Motor Neurone Disease Association.) Papers were given presenting our key findings and were followed by questions and discussion. Briefing papers are being prepared on each paper and will be hosted on the series website.
Year(s) Of Engagement Activity 2018
URL https://eadm.leeds.ac.uk/stakeholder-event-european-understandings-of-advance-decision-making/
 
Description Paper: 'Mental Illness and Pregnancy: Can Birth Plans Offer an Alternative to Court Authorised Obstetric Intervention?', presented at Stakeholder and Policymaker Workshop: European Understandings of Advance Decision-Making - Implications for Policy and Research, Wellcome Foundation, London. 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Policymakers/politicians
Results and Impact 36 stakeholders attended this workshop designed to feed back on our key findings from the seminar series. Attendes included Members of Parliament, members of professional bodies (including GMC, BMA, Faculty of Intensive Care Medicine, Royal College of Medicine), third sector organisations (including MIND, Compassion in Dying, Alzheimers' Society and Motor Neurone Disease Association.) Papers were given presenting our key findings and were followed by questions and discussion. Briefing papers are being prepared on each paper and will be hosted on the series website.
Year(s) Of Engagement Activity 2018
URL https://eadm.leeds.ac.uk/stakeholder-event-european-understandings-of-advance-decision-making/
 
Description Prof Kristian Pollock, University of Nottingham "Difficult conversations: how policy meets practice in Advance Care Planning for the end of life" at workshop European Understandings of Advance Decision-Making - Implications for Policy and Research 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Policymakers/politicians
Results and Impact 36 stakeholders attended this workshop designed to feed back on our key findings from the seminar series. Attendes included Members of Parliament, members of professional bodies (including GMC, BMA, Faculty of Intensive Care Medicine, Royal College of Medicine), third sector organisations (including MIND, Compassion in Dying, Alzheimers' Society and Motor Neurone Disease Association.) Papers were given presenting our key findings and were followed by questions and discussion. Briefing papers are being prepared on each paper and will be hosted on the series website.
Year(s) Of Engagement Activity 2018
URL https://eadm.leeds.ac.uk/stakeholder-event-european-understandings-of-advance-decision-making/
 
Description Professor Jean McHale, University of Birmingham: "Advance decisions, the Law Commission and the Mental Capacity Act 2005: 13 years on are we really any further forward?" at workshop European Understandings of Advance Decision-Making - Implications for Policy and Research 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Policymakers/politicians
Results and Impact 36 stakeholders attended this workshop designed to feed back on our key findings from the seminar series. Attendes included Members of Parliament, members of professional bodies (including GMC, BMA, Faculty of Intensive Care Medicine, Royal College of Medicine), third sector organisations (including MIND, Compassion in Dying, Alzheimers' Society and Motor Neurone Disease Association.) Papers were given presenting our key findings and were followed by questions and discussion. Briefing papers are being prepared on each paper and will be hosted on the series website.
Year(s) Of Engagement Activity 2018
URL https://eadm.leeds.ac.uk/stakeholder-event-european-understandings-of-advance-decision-making/
 
Description Professor Jo Samanta, De Montfort University: "Lasting powers of attorney, advance decisions and statements of wishes: an optimal triumvirate for advance care planning?" at workshop European Understandings of Advance Decision-Making - Implications for Policy and Research 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Policymakers/politicians
Results and Impact 36 stakeholders attended this workshop designed to feed back on our key findings from the seminar series. Attendes included Members of Parliament, members of professional bodies (including GMC, BMA, Faculty of Intensive Care Medicine, Royal College of Medicine), third sector organisations (including MIND, Compassion in Dying, Alzheimers' Society and Motor Neurone Disease Association.) Papers were given presenting our key findings and were followed by questions and discussion. Briefing papers are being prepared on each paper and will be hosted on the series website
Year(s) Of Engagement Activity 2018
URL https://eadm.leeds.ac.uk/stakeholder-event-european-understandings-of-advance-decision-making/
 
Description Professor Jörg Richter, University of Hull "Attitudes Towards Patient Autonomy in End-of-Life Decisions: A Systematic Comparative Review from the UK, the Netherlands, and Germany." At workshop European Understandings of Advance Decision-Making - Implications for Policy and Research 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Policymakers/politicians
Results and Impact 36 stakeholders attended this workshop designed to feed back on our key findings from the seminar series. Attendes included Members of Parliament, members of professional bodies (including GMC, BMA, Faculty of Intensive Care Medicine, Royal College of Medicine), third sector organisations (including MIND, Compassion in Dying, Alzheimers' Society and Motor Neurone Disease Association.) Papers were given presenting our key findings and were followed by questions and discussion. Briefing papers are being prepared on each paper and will be hosted on the series website
Year(s) Of Engagement Activity 2018
URL https://eadm.leeds.ac.uk/stakeholder-event-european-understandings-of-advance-decision-making/
 
Description S. Halliday & J. McHale March 2018, SLSA 2018 conference, University of Nottingham: 'Advance decisions and the protection of human dignity: can you ever refuse basic care?' 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Policymakers/politicians
Results and Impact Conference paper.
Year(s) Of Engagement Activity 2018
 
Description S. Halliday March 2018, SLSA (Socio-Legal Studies Association) 2018 conference, University of Nottingham: 'Insight and capacity, a tale of loss - could advance perinatal mental health care planning provide a happy ending?' 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Policymakers/politicians
Results and Impact Conference paper.
Year(s) Of Engagement Activity 2018