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

Lead Research Organisation: University of Leeds
Department Name: Law

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
 
Title Let me decide: An advance care directive for everyone 
Description Second short film to accompany Prof. Dr. William Molloy's book. 
Type Of Art Film/Video/Animation 
Year Produced 2017 
Impact This film introduces the Let Me Decide format. 
URL http://app.wipster.io/Review/CUO3CgBbJgbWds6zINhd81wJKZDouKMqbnKDVm3tTLg-GeuFhQ
 
Title Let me decide: Completing the let me decide form 
Description This third short film accompanies Prof. Dr. William Molloy's book. 
Type Of Art Film/Video/Animation 
Year Produced 2017 
Impact The film explains how to complete the form in an accessible and engaging way. 
URL http://app.wipster.io/Review/CcypCgA_XTzsXmliI3B8VAMbJmobQQGQR3CdueEzWiPO5PwpFw
 
Title Let me decide: What is an advance care directive 
Description Short film to accompany Prof. Dr. William Molloy's book. 
Type Of Art Film/Video/Animation 
Year Produced 2017 
Impact This video introduces the idea of an advance care directive to the general public. 
URL http://app.wipster.io/Review/Cfm1CgB8yq2LUdNp-cKtcyDzaTuWfbJxM6ZT_JtJ_S4z3JrGnA
 
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 Societal,Policy & public services

 
Description "Planning for the future - advance decision-making for the end of life" 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact 40 people attended my talk "Planning for the future - advance decision-making for the end of life," delivered as part of "Be Curious". A number of questions were asked both during and after the talk and some people followed up with queries by email.
Year(s) Of Engagement Activity 2016
URL http://www.stem.leeds.ac.uk/events/lfos/lfos-public-programme/becurious/
 
Description "Refusing life-prolonging treatment in advance of losing capacity: Law in action." 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Celia Kitzinger gave a public lecture to the Leicestershire Medico-Legal Society on the 18th January 2018 entitled "Refusing life-prolonging treatment in advance of losing capacity: Law in action."

This talk was advertised widely and was attended by local judges, lawyers, doctors, lay persons, students and quite a few nurses. It was very well attended and after the talk 4 new people signed up as members of the society. There was a lot of interest and questions. It was a great success.
Year(s) Of Engagement Activity 2018
 
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 Conceiving Better Birth Plans: Mental Illness, Pregnancy and Court Authorised Obstetric Intervention 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Study participants or study members
Results and Impact Presented a paper:'Conceiving Better Birth Plans: Mental Illness, Pregnancy and Court Authorised Obstetric Intervention'; presented at the third research seminar: Legal and professional responses to advance decision-making II.
Year(s) Of Engagement Activity 2015
URL http://eadm.leeds.ac.uk/seminar-3-legal-and-professional-responses-to-advance-decision-making-ii/
 
Description Contribution to World Association for Medical Law's World Congress 2015 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact I presented a paper: 'Conceiving Better Birth Plans: Mental Illness, Pregnancy and Court Authorised Obstetric Intervention'.
Year(s) Of Engagement Activity 2015
 
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 Gove - Practical and ethical issues related to the use of advance directives by people with dementia 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Study participants or study members
Results and Impact Presented to the first research seminar: Advance decision-making - the context, the promise and the pitfalls.

Dr Gove gave an overview of the practical and ethical issues associated with advance decisions in the context of dementia.
Year(s) Of Engagement Activity 2015
URL http://eadm.leeds.ac.uk/the-seminars/seminar-1-advance-decision-making-the-context-the-promise-and-t...
 
Description Hervey - "Advance-Decision Making in European Union Law: problems and potential" 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Study participants or study members
Results and Impact Presented to the 6th seminar: Advance decision-making: the European dimension. Professor Harvey's paper raised a number of questions about the potential for EU involvement.
Year(s) Of Engagement Activity 2017
URL http://eadm.leeds.ac.uk/seminar-6-advance-decision-making-the-european-dimension/
 
Description International conference: European Understandings of Advance Decision-making 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact This international, interdisciplinary conference attracted delegates and speakers from across the world, with delegates attending from the USA and a number of European countries, including Spain, France, Germany, Italy and the Netherlands. 11 papers were delivered.It is hoped that these papers will be published as an edited collection.
Year(s) Of Engagement Activity 2017
URL http://www.eadm.leeds.ac.uk
 
Description Jean McHale "Advance decisions and the MCA 2005: Just where did it all go wrong?" 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Study participants or study members
Results and Impact Presented to the first research seminar: Advance decision-making - the context, the promise and the pitfalls.

Professor McHale analysed some of the reasons why the MCA has failed to live up to its promise in relation to advance decisions and to assess how the law could be reformed. A number of questions were asked and some excellent discussion based upon Professor McHale's contribution ensued, focussing upon the disconnect between practitioners', lawyers', and patients' understandings of advance decisions.
Year(s) Of Engagement Activity 2015
URL http://eadm.leeds.ac.uk/the-seminars/seminar-1-advance-decision-making-the-context-the-promise-and-t...
 
Description Jörg Richter "Doctors' attitudes towards patient autonomy in end-of-life decisions - a comparative literature review from Germany, Italy, the Netherlands, and the UK" 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Study participants or study members
Results and Impact Presented to the third research seminar: Legal and professional responses to advance decision-making II. Professor Richter's presentation drew upon recent studies of attitudes from across Europe, leading to significant debate about the impact of such attitudes.
Year(s) Of Engagement Activity 2015
URL http://eadm.leeds.ac.uk/seminar-3-legal-and-professional-responses-to-advance-decision-making-ii/
 
Description Keynote 2: Prof R Heywood 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Keynote 2: Professor Rob Heywood, UEA Law School.
Shaping Our Future Destiny: Legal Observations on Advance Decision-Making - Past, Present and Future

The renewed emphasis on patient autonomy within medical law has brought important legal questions surrounding advance-decision making more sharply into focus. This, in tandem with the right to execute an advance-decision being placed on statutory footing by virtue of sections 24 and 25 of the Mental Capacity Act 2005, has caused judges in the Court of Protection to be confronted with an increasing number of cases in which they have asked to adjudicate on the validity and applicability of an advance-decision. While under the common law there was a tendency from judges to err on the side of caution and to override any purported advance-decision where there was the possibility of preserving life, arguably this attitude ought not to be invoked now with the same amount of ease. This paper begins by providing a historical insight into advance-decision making under the common law. It then updates the discussion by considering how, if indeed at all, judicial attitudes have changed towards advance-decision making in modern times. The paper concludes by providing a forward-looking analysis of some important yet unexplored issues that the Court of Protection may be faced with in the future.
Year(s) Of Engagement Activity 2017
URL http://www.eadm.leeds.ac.uk
 
Description Keynote : Prof J Ellershaw 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Keynote: Professor John Ellershaw, Professor of Palliative Medicine, University of Liverpool
Conversations and Advance Care Planning in end of life care - a challenging interface?

This paper will look at definitions around advance care planning, palliative care, and end of life care, and discuss issues around the development of the Advance Care Planning (ACP) Framework and its implementation in a care home setting.
The topics of future care and future care planning are part of everyday conversation with patients in medical practice, but the complexity of implementing Advance Care Planning (ACP) documentation into healthcare settings should not be underestimated; nor should the importance of education and training for healthcare practitioners involved in these conversations, particularly in relation to communication skills.
In Cheshire and Merseyside, the Marie Curie Palliative Care Institute at the University of Liverpool (MCPCIL) led a project to develop and Advance Care Planning (ACP) Framework (http://www.nwcscnsenate.nhs.uk/files/1414/4059/6386/Advance_Care_Planning_Framework_2015-18_FINAL.pdf). As part of this, a model was developed which identified formal, informal and clinical future care planning, supported by the Electronic Palliative Care Co-ordination System (EPaCCS).
ACP was implemented in a care home setting, together with an education and training programme and research and evaluation. The outcome of the project demonstrated that conversations should be timely and responsive to the needs and wishes of the resident, appropriate formal documentation should be disseminated to all those relevant in the current and future care of the resident, and that planned reviews should be built into the process. Key to supporting these conversations is ongoing end of life care education for health care professionals, including communication skills training.
The outcome we should be focused on is offering a conversation regarding future care rather than measuring the number of documents completed.
Year(s) Of Engagement Activity 2017
URL http://www.eadm.leeds.ac.uk
 
Description Kitzinger & Wilkinson: Writing an Advance Decision: (How) Can We Facilitate the Process? 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Study participants or study members
Results and Impact Presented to the first research seminar: Advance decision-making - the context, the promise and the pitfalls.

Professors Kitzinger gave a paper about ways in which she had tried to increase the uptake of advance decisions and to facilitate the drafting thereof. This led to a lively discussion about how individuals can best be supported in making advance decisions for their future care.
Year(s) Of Engagement Activity 2015
URL http://eadm.leeds.ac.uk/the-seminars/seminar-1-advance-decision-making-the-context-the-promise-and-t...
 
Description Kristian Pollock, University of Nottingham "The implementation of Advance Care Planning in Community Health Care Settings" 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Study participants or study members
Results and Impact Presented to the fourth research seminar: Preparing and implementing advance decisions. Dr Pollock presented findings from her recent study concerning advance care planning in the community setting. This led to considerable discussion about the need to consider how 'bad news' is communicated.
Year(s) Of Engagement Activity 2016
URL http://eadm.leeds.ac.uk/seminar-4-preparing-and-implementing-advance-decisions/
 
Description Lewis - "Does the CRPD advance advance directives in mental healthcare?" 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Study participants or study members
Results and Impact Presented to the sixth research seminar, Advance decision-making: the European dimension. Professor Lewis addressed the disconnect between UK law and policy and the CRPD. This lead to significant discussion and it was identified as an area where further research is necessary.
Year(s) Of Engagement Activity 2017
URL http://eadm.leeds.ac.uk/seminar-6-advance-decision-making-the-european-dimension/
 
Description Louise Bramley "Negotiating care services with frailty: Implications for decision making and advance care planning" 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Study participants or study members
Results and Impact Presented to the second research seminar: Legal and professional responses to advance decision-making I.

Dr Bramley presented evidence about her study of the perspectives of very frail older people and their carers on decision making and planning their future care. The need for further research, particularly in relation to the disconnect between health and social care provision and its impact upon advance decision making was discussed at length.
Year(s) Of Engagement Activity 2015
URL http://eadm.leeds.ac.uk/seminar-2-legal-and-professional-responses-to-advance-decision-making-i-2/
 
Description Marike de Boer delivered paper 'ACP in dementia' at the UNO-symposium on 13th December 2017 (UNO is our University Network for Elderly Care, VUmc) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Marike de Boer delivered a paper 'ACP in dementia' at the UNO-symposium on 13th December 2017 (UNO is the University Network for Elderly Care in Amsterdam)
Year(s) Of Engagement Activity 2017
 
Description Marion Albers "Advance Directives in Germany: Legal Regulation and Decision-Making Processes" 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Study participants or study members
Results and Impact Presented to the second research seminar: Legal and professional responses to advance decision-making I.

Professor Albers spoke about the regulation of advance decision making in Germany. The combination of advance decisions and proxy decision-makers led to signficant debate.
Year(s) Of Engagement Activity 2015
URL http://eadm.leeds.ac.uk/seminar-2-legal-and-professional-responses-to-advance-decision-making-i-2/
 
Description May: "Ethical perspectives on Advance Directives - Stability of patients wishes" 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Study participants or study members
Results and Impact Presented to the fifth research seminar: Advance decisions and dementia. Dr May focussed upon the ethical implications of advance decisions, considering how the individual's views may change over time. This led to discussions regarding where an external condition might be thought to undermine the validity of an anticipatory decision.
Year(s) Of Engagement Activity 2016
URL http://eadm.leeds.ac.uk/seminar-5-advance-decisions-and-dementia/
 
Description Negri - "Searching for common grounds and principles for the regulation of advance directives in Europe: the contribution of the Council of Europe" 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Study participants or study members
Results and Impact Presented to the sixth research seminar, Advance decision-making: the European dimension. Professor Negri analysed the contribution of the Council of Europe, leading to significant discussion of the role of the Council and questions concerning overlap with the EU competencies.
Year(s) Of Engagement Activity 2017
URL http://eadm.leeds.ac.uk/seminar-6-advance-decision-making-the-european-dimension/
 
Description Paper - Dr Alicia Perez Blanco 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Dr Alicia Perez Blanco, Hospital Universitario de La Princesa, Madrid
Can advance care planning enhance decision-making at end-of-life in the Intensive Care Unit?
Although people from different western countries express their desire to discuss their end-of-life, the majority do not agree with their physician a plan that matches their values with their options for treatment. The Intensive Care Unit (ICU) is crucial in end-of-life decision making. The percentage of patients dying following withdrawal of life sustaining treatment (LST) in Europe, varies from 48% in northern countries to 18% in the south1. Any effort to discuss end-of-life care with patients, while they are competent, before or just after admission to ICU is of utmost importance. The majority of patients admitted to ICU would not have the opportunity to express how they want to be treated because they do not tend to be competent to decide about withdrawal of LST, have not completed Advanced Directives (AD) nor discussed preferences with next-on-kin. In the rare case that the patient has completed AD, clinicians rarely follow them for several reasons; patients may have changed their preferences without updating AD, in case of family conflict, clinicians could not override AD.
This paper presents the design and preliminary findings (Phase 1) of a study at the ICU of Hospital Universitario de La Princesa (Madrid, Spain) to measure the impact of introducing advance care planning (ACP) in critically ill patients early in the course of their illness as it may facilitate share decision-making among health care staff, patients, and proxies, and reduce over or under treatment by promoting debate about end- of-life issues2. The study has three phases. Phase 1) Two-year prospective observational study documenting present practice by reviewing current communication tools used by staff with patients/families to exchange information on prognosis and preference for end-of-life treatment. Phase 2) Implementation of an intervention consisting of a facilitator (nurse/physician specially trained in communication and emotional support) acting as a mediator to achieve share decision-making during meetings with treating physicians. Phase 3) Evaluation of Phase 2 intervention with a validated scale for anxiety (Generalized Anxiety Disorder -7) and a satisfaction exit questionnaire to families 3 months after discharge focused on communication and impact of the facilitator in end-of-life decisions. Length of stay from the physician's proposal of LST withdrawal to death and monthly mortality rate in the ICU will also be compared. Analytical strategy: Quantitative descriptive analysis to describe the main features of numerical data and content analysis for free text data. Logistic regression for hospital mortality and Cox regression for length of stay will be used.
Findings of Phase 1 identified two main barriers to the implementation of a facilitator within the context of ICU:a) Healthcare staff do not take into account patient's values while they consider appropriate treatment options. First they follow evidenced based medical guidelines and then they consult the patient. Advance planning requires an inverse sequence: first consult the patient and then decide on best treatment.
b) Healthcare staff feel that they are doing their best at communicating with families/patients and may struggle to accept a facilitator except when conflict with patient/family has already occurred.
Year(s) Of Engagement Activity 2017
URL http://www.eadm.leeds.ac.uk
 
Description Paper - Dr L Bramley 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Dr Louise Bramley, University of Nottingham
Negotiating care services with frailty: Implications for autonomous decision making and the policy and practice of advance care panning.

Background: The Mental Capacity Act (MCA) provides a statutory framework for advance decision making and upholding patients' autonomous choices in the event of incapacity. In practice, advance care planning (ACP) can facilitate this process and is promoted in policy as a means by which older people living with frailty can make decisions regarding future care. However, few engage in this process and little is known about they regard advance care planning as relevant or what perspectives they have on decision-making for the future.
Aim: To investigate the perspectives of very frail older people and their carers on decision making and planning their future care.
Methods: The study adopted an exploratory case study design using serial qualitative interviews. Frail older people and their nominated carers were recruited from hospital wards in a large University Hospital NHS Trust prior to discharge. They took part up to two interviews either in hospital or their homes. Within and cross case qualitative analysis was undertaken.
Results: 16 frail older people and 8 carers were recruited (17 female, 7 male age range 70-96). Rapid changes in their physical condition meant older people living with frailty experienced uncertainty and as a result focused on living day to day. Making future care plans that were likely to become obsolete was of little interest to them. Increasing dependency on care and care systems appeared to offer little individual flexibility meaning that they struggled to assert any control over day to day decisions. For many, autonomous choice and decision making gave way to relationships, partnerships and negotiations that are commensurate with a more relational model of autonomy.
Discussion and Conclusion: Profound uncertainty and rapid change makes future decision making challenging for older people living with frailty. Lack of autonomy in day to day decision making makes the liberal ideal of autonomy as presented by the legalistic and ideologically driven policy of ACP out of step with the lived worlds of frail older people. For those facing increasing dependency on care and care services, frameworks that acknowledge a more relational approach when planning future care are needed to engage older people living with frailty in ACP.
Year(s) Of Engagement Activity 2017
URL http://www.eadm.leeds.ac.uk
 
Description Paper - Dr R Horn 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Dr Ruth Horn, University of Oxford
Why should I question a patient's wish?" A comparative study on physicians' perspectives on their duties to respect advance directives

This paper explores factors that impede the implementation of advance directives to refuse treatment (ADs) in three European countries: England, Germany and France. Taking into account socio-cultural and legal aspects, the paper shows the extent, to which the law can, and does, influence physicians' decisions to implement ADs. The findings presented are based on qualitative interviews exploring physicians' sense of duty to respect ADs and the reasons given for failing to implement the law. It will be argued that this depends on: 1) how strictly the legal status of ADs is defined, and 2) whether the law actually addresses the reasons why physicians may hesitate to implement ADs (e.g. uncertainty about validity, importance of patient preferences). The paper emphasises the importance of doctor-patient communication and shows how the implementation of ADs could be improved by making discussions about treatment preferences a legal requirement.
Year(s) Of Engagement Activity 2017
URL http://www.eadm.leeds.ac.uk
 
Description Paper - G. Loomes 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Gillian Loomes, University of York
Cripping the Crystal Ball: Exploring the Synergies and Tensions when Advance Care Planning and Disability Politics Meet

The case of Re T. confirmed in Anglo-Welsh law the right of adults with the mental capacity to make decisions regarding a medical treatment to choose whether to consent to the treatment, to refuse it, or to choose one or another of the treatments offered. This right was extended by the Mental Capacity Act 2005 (the 'MCA 2005'), which introduced a statutory framework for people in England and Wales to make decisions concerning medical treatment in advance of a time when they lose the mental capacity to do this for themselves. Specifically, ss.24-26 MCA 2005 provide scope for the making of legally binding Advance Decisions to Refuse Treatment (ADRTs), and ss. 9-14 MCA 2005 set out the procedure whereby an individual can create a Lasting Power of Attorney (LPA) to enable another person, or people, to make decisions on their behalf in the event they lose the mental capacity to do this for themselves, with health and welfare decisions forming part of this framework.
The implementation of the rights enshrined within the MCA 2005, described as conveying precedent autonomy, have been the focus of academic research, and of socio-political discourse and policy making: Including consideration of ways to make ADRTs more effective in practice (Kitzinger, 2014), ways to increase understanding and uptake of ADRTs (Kitzinger and Kitzinger, 2016), and advance care planning in relation to specific circumstances, e.g. ageing (Bond and Lowton, 2011), and primary care (Murray et al. 2006). Additionally, charities have sought to promote access to advance care planning through specific tools to assist with this process (e.g. Compassion in Dying, n.d.).
What has thus far received scant consideration, however, is the potential inflection of such discourses in relation to disability politics - e.g. concerning disabled people and the right to life (Clements and Read, 2008) and temporal/adjustment considerations around "the need to accept limitations and find ways of living with them" associated with acquired impairment (Shakespeare, 2006: 117). This paper draws on 15 semi-structured interviews with disabled activists, including those involved in the organization of disabled people's organizations, scholar-activists, and disability advocates, recruited by snowball sampling. Each interview lasted on average 60 minutes, and was recorded and transcribed by the researcher. In presenting a thematic analysis of participants' views concerning the legal framework of advance care planning - both conceptually, and regarding the tools designed to facilitate access to this legal right, the paper highlights the range of often deeply-held views voiced by disabled activists on this issue (from fear that normalization of ADRTs would devalue the lives of disabled people, to concern that the right of advance care planning is currently inaccessible to some with disabilities). It thus seeks to provide insights for those involved in supporting disabled people to assert their legal rights in advance care planning, and to make recommendations for future policy and strategy regarding disabled people, their organizations, and across wider health and social care domains.
Year(s) Of Engagement Activity 2017
URL http://www.eadm.leeds.ac.uk
 
Description Paper - S. Halliday & J. McHale 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Dr Samantha Halliday (Law, University of Leeds) and Professor Jean McHale (Law, University of Birmingham)
Advance decisions: can you ever refuse basic care?

The inclusion of advance decisions in the Mental Capacity Act 2005 was extremely controversial and throughout its passage through Parliament concerns were raised about the permissible scope of advance decisions. The Act makes it very clear that an advance decision may only refuse, rather than demand, treatment and that an advance decision will not constitute a request for assisted dying, or a valid refusal of treatment provided under the Mental Health Act. However, an exclusion not set out on the face of the Act is found in the Code of Practice stating:
"An advance decision cannot refuse actions that are needed to keep a person comfortable (sometimes called basic or essential care). Examples include warmth, shelter, actions to keep a person clean and the offer of food and water by mouth. Section 5 of the Act allows healthcare professionals to carry out these actions in the best interests of a person who lacks capacity to consent (see chapter 6). An advance decision can refuse artificial nutrition and hydration."
This paper considers the legislative background to this apparent limitation upon the scope of advance decisions and questions what constitutes basic care and why is it excluded from the ambit of advance decisions. It concludes that the current limitation reflects the state of the debate around end of life decision-making during the 1990s and early 2000s and that the questions of public policy and public interest in advance decision-making and refusals of basic care need to be revisited.
Year(s) Of Engagement Activity 2017
URL http://www.eadm.leeds.ac.uk
 
Description Paper Kevin de Sabbata 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Kevin De Sabbata, University of Leeds
Advance Directives, Dementia and the UN Convention on the Rights of Persons with Disabilities: A new role for anticipated will
Advance directives are legal documents in which a person specifies his or her choices on medical treatment for the time in which he or she will be lacking legal capacity. This legal instrument normally enters into force once an individual, because of a mental disability or other problems of communication, is considered incapable to make valid care decisions by law.
However, the UN Convention on the Rights of Persons with Disabilities (UNCRPD) advocates for the elimination of the traditional binary distinction between legal capacity and incapacity. Indeed, Article 12 UNCRPD affirms that disabled individuals shall enjoy legal capacity on an equal basis with others and that appropriate measures need to be put in place in order to provide them with the support they may require in exercising their right to make decisions. As stressed by the Committee on the Rights of Persons with Disabilities, under such provisions physical or mental impairments are not a valid justification for depriving a person of his or her legal capacity and supported decision-making should be used to promote the person's decisional power even in case of severe mental illnesses.
The new approach emerging from the Convention is particularly promising in relation to conditions such as dementia, which provokes a progressive deterioration of memory and reasoning ability. In fact, in this context, the loss of capacity occurs gradually, rather than all of a sudden, making it challenging to apply the traditional binary concept of legal capacity/incapacity. Moreover, also with regard to treatment decisions, Article 12 UNCRPD puts at the centre the will of disabled people, empowering them to exercise more fully their autonomy. However, it is not clear which role advance directives have in this new system. In fact, on the one hand, the UNCRPD Committee considers this legal tool as a means to support the person and to reconstruct his or her will when it is not possible to directly communicate with him/her. On the other hand, it does not specify the status of advance directives in relation to other decision aids and does not provide guidance on how we should determine the exact moment in which such legal documents should enter into force.
This paper analyses the role advance directives play within the support-centred model proposed by Article 12 UNCRPD, focusing on the specific case of treatment decisions of people with dementia. It maintains that, under the UNCRPD, advance directives should not be considered as an isolated document with autonomous binding force, being rather one of the many tools for reconstructing the will of the person. In this regard, it studies the challenges posed by this new approach to advance care planning with a particular focus on the need of guaranteeing the correct reconstruction of the person's wishes and of preventing abuses. In doing this it refers to concrete examples emerging from dementia care practice in various European countries.
Year(s) Of Engagement Activity 2017
URL http://www.eadm.leeds.ac.uk
 
Description Paper for NI Ethics Forum 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact S. Halliday was invited to address the Northern Ireland Forum for Ethics in Medicine and Healthcare and gave a paper 'Advance Decisions as a Mechanism to Extend Autonomy Past the Onset of Incapacity'.
Year(s) Of Engagement Activity 2017
 
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 Paper: A. Gieselmann 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Astrid Gieselmann & Professor Jochen Vollmann, Ruhr Universität Bochum; Professor Alfred Simon, Göttingen; and Professor Bettina Schöne-Seifert, Universität Münster
How should advance directives be implemented in psychiatry? Clinicians' attitudes toward different types of advance directives in psychiatric treatment in Germany.

Advance directives are designed to specify a person's preferences for treatment in case one becomes incompetent to make treatment decisions in the future. In most western countries, they are seen as a useful tool to promote patient autonomy with regard to end-of-life medical decisions and dementia.
Advance directives, however, may also be useful for individuals with mental disorders such as bipolar disorder, schizophrenia, or depression: Writing such an advance directive allows someone with a mental disorder to express his treatment preferences, while in a competent state of mind, regarding decisions that must be made when his capacity for decision-making is impaired, which enables patients to stay in control in a crisis. Furthermore, other additional advantages related to psychiatric treatment have been discussed, such as enhanced therapeutic relationships, improved compliance with treatment, reduction of coercive treatment in psychiatry, and decreased perceived coercion.
Although the benefits of the use of advance directives in psychiatry are widely acknowledged, and German law authorizes their use, the application of advance directives in German psychiatric practice remains low. This surprising fact raises several questions. First, which barriers prevent the further implementation of advance directives in psychiatric treatment? Second, because endorsement by psychiatrists is an important precondition for their successful implementation, what do clinicians think about the use of advance directives?
This presentation will address these questions by reporting the preliminary findings of a survey of 396 German psychiatrists on their experiences and attitudes toward different types of advance directives, including psychiatric advance directives, which are written by patients without any specific assistance, and joint crisis plans ("Behandlungsvereinbarungen"), where involvement of the clinical team is required. The presentation will describe perceptions of potential barriers to the implementation of advance directives and the finding that clinicians' attitudes differ largely according to the type of advance directive. Ethical and practical questions regarding these different types of advance directives will also be discussed, along with the relevance of these questions for increasing the use of advance directives in psychiatry.
Year(s) Of Engagement Activity 2017
URL http://www.eadm.leeds.ac.uk
 
Description Paper: J. Samanta 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Professor Jo Samanta, De Montfort University
Advance decisions and Welfare LPAs: belt and braces for advance care planning?

Recognised asymmetries exist between anticipatory and contemporaneous decision making in end of life care. In effect, this means that the legal and moral authority of advance decisions to refuse treatment can be undermined and not result in the desired effect. One potential solution might be to instruct a health and welfare attorney as an adjuvant to an advance care plan. Health and welfare lasting powers of attorneys (LPAs) were introduced by the Mental Capacity Act 2005 and for the first time in England permit substituted decision-making for medical treatment for adults who lack capacity to consent. These require compliance with a range of technicalities formalities and require attestation by a certificate provider. Although they offer potential advantages over advance refusals of treatment they are underpinned by a different ethical premise which brings with it its own notable challenges.
This paper considers the possible benefits of welfare LPAs as a mechanism for surrogate decision-making at end of life. It also considers some of the key potential and actual challenges that might arise in this context. Ultimately, it carries a positive message that these can be a useful way to plan for possible incapacity at the end of life.
Year(s) Of Engagement Activity 2017
URL http://www.eadm.leeds.ac.uk
 
Description Paper: L. Stephenson 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Dr Lucy Stephenson, Kings' College London
Provision for Self-Binding Advance Directives Should be Included in Mental Health Act Reform

Advance Statements are supported by mental health policy (the Mental Health Act Code of Practice), service user groups and are credible as means to enhance collaborative care, personalised medicine and patient autonomy. However, as yet, there is no current formal provision for such statements. Advance refusals of treatment are catered for within the Mental Capacity Act (2007) but advance requests are a neglected area.

Self-binding directives (SBDs) or Ulysses Clauses are one type of advance request which would offer individuals with fluctuating conditions, such as Bipolar, the opportunity to 'bind' themselves into treatment during future episodes and thus avoid some of the damage which has happened to them in previous episodes. I will explain how such directives can function as an important means of both achieving damage limitation and enhancing patient autonomy. Objections about these directives generally fall into ethical, legal and clinical categories. Common ethical concerns are around the detention of individuals who may pass a standard assessment of mental capacity. Common legal concerns centre around the enforceability of such a directive within the current legal framework whilst common clinical concerns are around resource availability. I will show how the major concerns raised against (SBDs) are based on a protectionist approach to mental healthcare and a 'passive' model of human rights.

To conclude, I will make some suggestions as to how this type of request could be supported under current mental health law. I will outline where they would fit into both the Mental Health Act's status and risk criteria and the notion of Decision-Making Capacity. I will argue that if recent calls for revision of the Mental Health Act are successful (as detailed in the conservative party manifesto) provision should be made for self-binding advance directives.
Year(s) Of Engagement Activity 2017
URL http://www.eadm.leeds.ac.uk
 
Description Peter Bartlett "Advance Decisions under the Mental Capacity Act 2005 in Cases of Bipolar Disorder" 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Study participants or study members
Results and Impact Presented to the third research seminar: Legal and professional responses to advance decision-making II. Professor Bartlett's paper sparked questions and discussions and highlighted the importance of advance decisions relating to mental health.
Year(s) Of Engagement Activity 2015
URL http://eadm.leeds.ac.uk/seminar-3-legal-and-professional-responses-to-advance-decision-making-ii/
 
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 Rachel Hutchings, Compassion in Dying "Preparing an Advance Decision - Learning from Compassion in Dying" 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Study participants or study members
Results and Impact Presented to the fourth research seminar:Preparing and implementing advance decisions.

Ms Hutchings spoke about the work of Compassion in Dying in this field.
Year(s) Of Engagement Activity 2016
URL http://eadm.leeds.ac.uk/seminar-4-preparing-and-implementing-advance-decisions/
 
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 - Insight and advance decisions - Exeter College, Oxford 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact January 2018, S. Halliday presented a paper at the 1 day conference: Childbirth: Vulnerability, Violence, and Control, Exeter College, University of Oxford: 'Court authorised obstetric intervention: Insight and capacity, a tale of loss'. Chapters based upon papers presented at this conference will be published in an edited book (Routledge) in 2019, edited by Professor Jonathan Herring and Dr Camilla Pickles.
Year(s) Of Engagement Activity 2018
 
Description S. Halliday - perinatal advance decisions 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Postgraduate students
Results and Impact S Halliday presented a paper at the University of Huddersfield Business School Research Conference: 'Insight and capacity, a tale of loss - could perinatal mental health care planning provide the happy ending?'
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
 
Description SLSA conference 2016 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact I presented a paper: 'Conceiving Better Birth Plans: Mental Illness, Pregnancy and Court Authorised Obstetric Intervention'; presented at the SLSA annual conference, University of Lancaster.
Year(s) Of Engagement Activity 2016
 
Description Sander Welie "Advance directives in the Netherlands: legal framework and some considerations" 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Study participants or study members
Results and Impact Presented to the third research seminar: Legal and professional responses to advance decision-making II. Dr Wellie discussed the range of advance care planning methods in the Netherlands, ranging from advance euthanasia directives, to psychiatric advance decisions. His paper sparked considerable interest with a number of participants seeking further information about the Dutch legislation relating to advance decisions.
Year(s) Of Engagement Activity 2015
URL http://eadm.leeds.ac.uk/seminar-3-legal-and-professional-responses-to-advance-decision-making-ii/
 
Description Sharon Burton "Creating a supportive culture through professional regulation: a view from the UK" 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Study participants or study members
Results and Impact Presented to the second research seminar: Legal and professional responses to advance decision-making I.

Sharon Burton addressed the role of the regulator as a positive influence upon professional practice and frontline services. Significant discussion followed, particularly in relation to the impact of the Montgomery decision.
Year(s) Of Engagement Activity 2015
URL http://eadm.leeds.ac.uk/seminar-2-legal-and-professional-responses-to-advance-decision-making-i-2/
 
Description Steve Bell, Motor Neurone Disease Association "Advance decision-making, the MND context" 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Study participants or study members
Results and Impact Presented to the fourth research seminar:Preparing and implementing advance decisions.

Mr Bell spoke about the findings of the most recent Improving Motor Neurone Disease (MND) Care survey and the implications of those findings in the context of advance care planning. The findings of the survey led to significant debate.
Year(s) Of Engagement Activity 2016
URL http://eadm.leeds.ac.uk/seminar-4-preparing-and-implementing-advance-decisions/
 
Description Sue Wilkinson & Celia Kitzinger, "Advance Decisions Assistance (ADA): Lessons from our first year" 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Study participants or study members
Results and Impact Presented to the fourth research seminar:Preparing and implementing advance decisions.

Professors Wilkinson and Kitzinger presented a paper about their activities relating to the organisation they founded in 2015 - Advance Decisions Assistance. It led to significant discussion of the practical aspects of ensuring the AD can be found and discussion of what might constitute good practice.
Year(s) Of Engagement Activity 2016
URL http://eadm.leeds.ac.uk/seminar-4-preparing-and-implementing-advance-decisions/
 
Description William Molloy Let Me Decide: an update on recent research 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Study participants or study members
Results and Impact Presented to the first research seminar: Advance decision-making - the context, the promise and the pitfalls.

Professor Molloy spoke about his research into the use of his Let Me Decide instrument for advance decision-making. His paper sparked a lively discussion about differing understandings of advance decisions.
Year(s) Of Engagement Activity 2015
URL http://eadm.leeds.ac.uk/the-seminars/seminar-1-advance-decision-making-the-context-the-promise-and-t...
 
Description de Boer: "Advance directives in dementia care - from the perspective of people with dementia" 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Study participants or study members
Results and Impact Presented to the fifth research seminar: Advance decisions and dementia. Dr de Boer addressed the use of advance decisions in the context of dementia in the Netherlands, presenting the findings of her research study. This lead to questions and discussion and an increased awareness of the way in which individual's choice change over the course of their illness.
Year(s) Of Engagement Activity 2016
URL http://eadm.leeds.ac.uk/seminar-5-advance-decisions-and-dementia/