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ESRC Research Seminar Series: 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 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; advance decisions 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 advance decision 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 advance decision. An advance directive 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, advance decisions 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 advance decision 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 advance decision from the time at which it should be implemented, but advance decisions 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, advance decisions are usually subjected to stringent validity and applicability requirements, requirements that typically give significant discretion to the healthcare professional charged with implementing the advance decision to determine whether or not the advance decision is binding in the treatment scenario that occurs.

The seminar series aims to facilitate the founding of an interdisciplinary European research network investigating the legal, social and medical attitudes toward precedent autonomy within Europe and to developing a European strategy to enhance advance decision-making in all its forms. It seeks to promote and support high quality research and to encourage a more critical and constructive assessment of the law relating to advance decision-making within Europe, interlinking legal discourse with policy and practice discourses on aspects of mental health and mental incapacity law, promoting a multiperspective dialogue and analysis. It will bring together leading researchers, practitioners, PhD students and third sector workers from across Europe.

The series seeks:

(i) to develop our understandings of how advance decision-making operates, at a legal, healthcare professional and social level;

(ii) to inform implementation strategies to encourage uptake of advance decisions from people who would like to exercise prospective autonomy and to facilitate the drafting of advance decisions that reflect the author's intentions and are likely to be capable of implementation;

(iii) to consider ways in which the European Union may have a role to play in promoting European advance decisions, effective within the EEA.

(iv) to collaborate on the production of a special issue of a high-ranking journal addressing these issues.

The objectives above are central to achieving our ultimate aim of creating a European network with a view to submitting a bid for Horizon 2020 funding to consider the fit between legal, professional and user understandings of advance decision-making and enhance the ability of individuals to plan effectively for times of incapacity. 

The series will be made up of six research seminars (2015 – 2016) followed in 2017-8 by a 2-day workshop and a European symposium. Specific dates will be added to the webpage as soon as possible so please keep checking back!

All the research seminars are open to all, but places are limited so if you would like to attend please contact us to reserve a place ASAP. A minimum of two places will be allocated to PhD students at each seminar. PowerPoint presentations and podcasts will be made available on the series website, subject to the consent of the authors and participants.

Seminars are free, but there is a charge of £15 to cover the cost of lunch and refreshments and registration is required.

Seminar 4: Preparing and implementing advance decisions (Warwick, 2016). This seminar will focus upon how advance decisions capable of implementation can be created and their role within the advance care planning context.

Seminar 5: Advance decisions and dementia (Leeds, 2016). This seminar will focus upon dementia, an area where advance decisions are considered to be particularly relevant, but which has been particularly contentious due to concerns relating to personhood.

Seminar 6: Advance decision-making: the European dimension (Leeds, 2016): This seminar will focus upon the way in which advance decisions might be promoted, and regulated, at a European level.

Two- day workshop (Leeds, 2017).

European symposium on Advance Decision-Making (Leeds, 2017).

For more information see here.