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Background to the series

The nature of the doctor-patient relationship has moved from a medical paternalism paradigm to one that stresses the importance of patient autonomy and adopts a model of shared decision-making. Within this model, doctors play a pivotal role in providing information and expertise to enable patients to make effective choices about the medical care and treatment they receive. The principles of dignity and autonomy stress respect for the patient as an individual, rather than as an object of concern, and attempts to promote precedent autonomy aim to extend that respect to those no longer capable of exercising autonomy, prioritising the patient’s wishes over her welfare. Advance decisions offer 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 may undermine both the legal and moral authority of an advance decision (Buchanan & Brock, 1990). Moreover, the validity and authority of anticipatory decision-making call into question the interplay of two potentially conflicting interests—that of society in upholding the sanctity of life and the patient’s right to self-determination. Legislative attempts to resolve this conflict must seek to institute suitable safeguards, without rendering the exercise of precedent autonomy illusionary.

A number of studies have sought to summarise the differing legal responses to advance decision-making in Europe (see e.g. Halliday, 2009; Andorno et al, 2009; Goffin, 2012), although typically these studies have focussed upon the use of advance decisions as a part of end of life planning. This seminar series focuses upon advance decision-making in a broader context, encompassing both psychiatric advance directives and advance refusals of treatment relating to physical health. There are significant differences in the ethical and legal considerations that apply to the two forms of advance decision, particularly given the compulsory nature of many treatments administered under Mental Health legislation. However, the dividing line between physical and mental health is often blurred, particularly in cases involving dementia, and the protection of dignity and autonomy demand that a much more inclusive approach be adopted to the exercise of precedent autonomy in all its forms.

Moreover, this seminar series differs in that while it will consider a range of European legislative responses to anticipatory decision-making it will do so in a comparative context, 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 advance decisions that both reflect the author’s intentions and are likely to be capable of implementation by healthcare professionals at a later date. This is particularly important given that the ‘therapeutic alliance’ upon which advance decisions are considered to be based, no longer necessarily exists at the time of implementation. When the advance decision comes to be implemented, even in jurisdictions where it is accorded binding effect, that effect will only apply so long as the healthcare professional(s) charged with implementing the decision believes it to be valid and applicable in the circumstances. These requirements introduce a demonstrably wide discretion that may undermine advance decisions, enabling the promotion of the patient’s current welfare, rather than her previously expressed autonomy. Therefore, it is particularly important to explore the fit between the law and professional guidance, and between the law, professional guidance and attitudes of healthcare professionals. The co-applicant Jörg Richter undertook a significant comparative study of healthcare professional attitudes towards advance directives in Sweden, Germany and Austria, finding that doctors were unlikely to implement advance directives if they regarded the treatment refused as clinically indicated (Eisemann et al.,1999a). Richter’s research predates the legislative initiatives which seek to give effect to advance decisions, but more recent research, restricted to individual jurisdictions, has confirmed that only some doctors find advance decisions helpful and that a significant number of doctors remain reluctant to comply with advance decisions, preferring to treat patients in accordance with their best interests (as assessed by the doctors) (see e.g Vezzoni, 2005; Schaden, 2010). It is likely that there is significantly more resistance to compliance in the case of psychiatric advance decisions (Atkinson, 2004; Amering et al, 2005; Swanson et al, 2007).

Whilst establishing reluctance on behalf of healthcare professionals to be bound by advance decisions, Richter established high levels of support among the general population for involvement in advance care planning. (Eisemann et al,1999b). Many health-related charities promote the use of advance decisions, including for example Alzheimer’s Europe, an organisation that will collaborate in the seminar series and lead one of the seminars. Charities and national authorities provide information on opportunities for making advance decisions, nevertheless, uptake of advance decisions remains low throughout Europe. This may be attributed to the onerous pre-requisites for binding effect imposed by legislation (such as the need for a refusal of life-sustaining treatment to be in written format, Mental Capacity Act 2005; or the requirement that the advance decision be notarised, Austrian Advance Directive Act), it may reflect a lack of knowledge about advance decision-making, the view that that an advance decision is unnecessary as their next of kin will make the decision, a belief that advance decisions are morbid, fears of being unable to change the decision, or simply inertia (e.g. Olick,2001; Fagerlin & Schneider,2004; Evans et al,2012).

This seminar series offers a timely opportunity to reflect upon the implementation of legislation such as the Scottish Adults with Incapacity Act 2000, the English Mental Capacity Act 2005 and the Austrian Advance Directives Law 2006, and to consider ongoing debates such as those in the Republic of Ireland following the publication of the Irish Law Commission’s report and draft Mental Capacity (Advance Care Directives) Bill, 2009. The seminar series will 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 capacity law, promoting a multi-perspective dialogue and analysis. It will bring together leading researchers, practitioners, PhD students and third sector workers (hospices and health charities) from across Europe.

References:

  • Amering, P. Stastny & K. Hopper, K. “Psychiatric advance directives: Qualitative study of informed deliberations by mental health service users.” (2005) 186 The British Journal of Psychiatry 247
  • Andorno, N.Biller-Andorno & S. Brauer “Advance Health Care Directives: Towards a coordinated European policy” (2009) 16 European Journal of Health Law 207
  • JM Atkinson, H.C. Garner, and W. Harper Gilmour “Models of advance directives in mental health care: Stakeholder views.” (2004) 39(8) Social Psychiatry and Psychiatric Epidemiology 673.
  • A.E. Buchanan & D.W. Brock Deciding for others: the ethics of surrogate decision making, Cambridge: CUP, 1990.
  • Eisemann, J. Richter, B. Bauer, M. Bonelli & F. Porzsolt “Doctors' decision-making in incompetent elderly patients. A comparative study between Austria, Germany (East, West), and Sweden.” (1999) 11(3) International Psychogeriatrics 313.
  • Eisemann, M. Ericsson, M. Nordenstam, J. Richter & D.W. Molloy “Attitudes towards self-determination in health care - A general population survey in northern Sweden.” (1999) 9(1) European Journal of Public Health 41.
  • Evans, C. Bausewein, A. Arantza Meñaca, E.V.W. Andrew, I.J. Higginson, R. Harding, R. Pool, Majolein Gysel “A critical review of advance directives in Germany: Attitudes, use and healthcare professionals’ compliance” (2012) 87(3) Patient Education and Counseling 277.
  • Fagerlin & C. Schneider “Enough. The failure of the living will.” (2004) 34(2) Hastings Center Report 30
  • Goffin “Advance Directives as an Instrument in an Ageing Europe” (2012) 19 European Journal of Health Law 121
  • Halliday “Legislating to give effect to precedent autonomy: comparative reflections on legislative incompetence” (2011) 11 Medical Law International 127.
  • RS Olick Taking Advance Directives Seriously: Prospective Autonomy and Decisions Near the End of Life, Washington, D.C.: Georgetown University Press, 2001
  • Schaden, P.Herczeg, S. Hacker, A. Schopper, C.G. Krenn “The role of advance directives in end-of-life decisions in Austria: survey of intensive care physicians” (2010) 11:19 BMC Medical Ethics.
  • J.W. Swanson, S. Van McCrary, M.S. Swartz, R.A. Van Dorn & E.B. Elbogen “Overriding psychiatric advance directives: Factors associated with psychiatrists’ decisions to pre-empt patients’ advance refusal of hospitalization and medication.” (2007) 31(1) Law and Human Behavior 77.
  • Vezzoni The Legal Status and Social Practice of Treatment Directives in the Netherlands. Groningen: RUG, 2005
  • Alzheimer Europe Advance Directives. A Position Paper 2009. Available at: http://www.alzheimer-europe.org/Policy-in-Practice2/Our-opinion-on/Advance-directives
  • Irish Law Reform Commission Report: Bioethics: Advance care directives, 2009