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

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.

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.