Title: Advance Decisions: Informing implementation strategies through interdisciplinary and cross-national dialogue
Funder: Economic and Social Research Council

Abstract: An Advance Decision is a document that allows people to set out their wishes and preferences for medical treatment in advance, in the event that they later become unable to express those wishes (e.g. because they are in a coma, or have dementia). They were recently given statutory legal force in the Mental Capacity Act 2005, which came into force in 2007. Advance refusals of treatment (e.g. refusing a ventilator, or artificial nutrition and hydration) are legally binding on doctors in England and Wales and are actively promoted by many key charities, including Age UK, Macmillan Cancer Support, the Motor Neurone Disease Association, Marie Curie Cancer Care and most hospices. This new legislation is in part a response to the widely recognised problem that people are not getting the kind of death they want (e.g. home rather than hospital) and to the acknowledged problem of over-treatment at the end of life (Leadbeater & Garber, 2010). There is evidence that increased uptake of ADs is likely to result in people's choices about the kind of treatments they do and do not want to receive at the end of life being better respected (Satherley & Hehir, 2010). However, uptake of ADs has been low: survey polls show that uptake ranges from about 3% to 8% in the general population. There is virtually no research in the UK addressing this issue. This is a timely seminar series that will address some of the issues arising five years after the (2007) implementation of the Mental Capacity Act 2005. The aim of this seminar series is to address the problem with uptake of ADs in the UK from a trans-national and interdisciplinary perspective that uses lessons learnt from the much longer history of ADs in the USA and brings together people working in charities concerned with promoting ADs, academics with expertise across a range of disciplines including law, medical, sociology/psychology and bioethics (including a leading bioethicist from the USA), and practising doctors. The main objectives are: (i) to develop our understandings of what inhibits people in the UK from planning ahead for their medical care in advance of a crisis (ii) to work out the best ways of encouraging uptake of ADs (iii) to identify new research agendas arising out of the introduction of ADs into statutory law in the UK (iv) to collaborate on the production of an edited book addressing these issues. We will also inform a wider public discussion of ADs by creating an online forum recording the findings of the symposium (e.g. posting speaker slides, and a collection of completed ADs with commentary) and by working with a local community arts center to show films followed by discussion sessions around this issue. The seminar series will benefit the participants for whom it will be an intensive interdisciplinary and academic-practitioner learning experience; the practice-settings in which many of them also work (e.g. in law, medicine and palliative care) and in relation to which they sit on influential committees and working parties drawing up guidelines for practice; the charities and hospices aiming to increase the use of ADs - (representatives from these will also be seminar participants); and other academic researchers in the field of end-of-life decision making and informed choice in medical care.


Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;8.3 POLICY, ETHICS AND RESEARCH GOVERNANCE
Health categories: GENERIC HEALTH RELEVANCE