Final Report Summary - ADVANCED (Advance decision-making: Advance directives and proxy decision-making in France and in England)
Accomplishment of research objectives as presented in the original proposal
Objectives of the research:
The main objective of the project was to explore advance decision-making as it is theorised and actualised in both France and England, with a view to exploring the differences between the two contexts and identifying common themes and a common understanding, which can thereby enhance debates in Europe (and beyond).
The specific objectives were:
1. Develop theoretical and normative expertise, through investigation of the professional and specialist literature (in healthcare, bioethics, sociology and law) on autonomy, advance directives and proxy decision-making in: (a) the UK (specifically England); and (b) France;
2. Gain insight into the practices and dilemmas associated with advance directives and/or proxy decision-making, through empirical research into the views and attitudes of health professionals in: (a) the UK (specifically England); and (b) France;
3. Explore differences in the concepts, policies and practices associated with advance directives and/or proxy decision-making in the English and French contexts;
4. Identify common themes and seeking to shape a common understanding about advance decision-making for deployment in debates in the English and French contexts;
5. Contribute to debates on the ethical, political, practical and sociological dimensions of advance decision-making in the European (and international) context.
Work performed
1. In order to develop theoretical and normative expertise, I undertook literature-based research using e.g. search engines such as PubMed and the French Inter University Library Catalogue BIUM (www.bium.univ-paris5.fr/). I searched for articles regarding “advance directives”, “living wills”, “treatment withdrawal”, “patient autonomy” etc. I read relevant legal texts (laws, rulings), parliamentary reports regarding advance directives or end-of-life decision-making, professional guidelines and academic (philosophical, legal, medical) literature on the subject in both countries.
Additionally to this, I attended lectures and seminars at the University of Bristol on English medical and criminal law, end-of-life care and bioethics. Numerous discussions with my supervisor, Richard Huxtable, and colleagues from the Centre for Ethics in Medicine in Bristol gave me the opportunity to further develop my understanding of the English debate on end-of-life issues, and dominant moral concepts and ethical theories in a broader sense.
2. In order to gain insight into the practices and dilemmas associated with advance directives (ADs), I interviewed in 2011 in each country 14 physicians from university hospitals in two different cities. The focus was on doctors working in services which take care of seriously or terminally ill patients (specifically, oncology, nephrology, neurology, geriatrics and palliative care). These services are characterised through often intense relationships with patients who, for many years, come to the same service, in which the staff closely follows the evolution of the patient’s illness and have extensive knowledge of that patient’s personal and professional situation. Ethical approval for the study was sought in England from the National Research Ethics Service (NRES); in France, the Commission Nationale de l’Informatique et des Libertés confirmed that no approval was needed. The interviews were analysed according to a conventional qualitative approach focusing on identifiable and comparable recurrent themes and patterns in each country. The inductive approach enabled me to discover unexpected problems and connections between themes. The main themes that emanated from the interviews concerned: (1) particular problems that emerge when deciding to withdraw or withhold LST in a particular hospital service; (2) decision-making procedures and the participation of different persons; (3) implementation of ADs; (4) perspectives on improving decision-making processes (Horn, 2012b).
The interviews revealed cultural differences in the understanding of ADs and regarding prevailing values and norms in each country. The English law and professional guidelines emphasise patient autonomy and this appeared to have an impact on physicians’ attitudes. English doctors perceived their role as one of serving the patient and helping her according to her own views. What counts is not only physical welfare, but also psychological welfare through respect for individual preferences. Almost all physicians in England confirmed that ADs would be very useful in the decision-making process and that they consider them to be completely binding if they are valid. Yet, their main concern was to actually know when an AD expresses the authentic and genuine will of a patient. Compared to their English colleagues, French physicians appeared to be, as they explained, more body-centred and caring for a patient means to do all that is possible from a medical perspective. Although all French physicians recognised the importance of patient autonomy it seems to be at least as important or even more important to them to protect the patient and to make decisions on her behalf. Thus, ADs were seen as “Anglo-Saxon inventions [...] which have not their place in French practice”. Patients were described as vulnerable persons that must be protected by a community that expresses particular social values. The French physicians did not associate respect for the patient’s dignity, humanity or empathy with respect for the patient’s autonomy. Rather, they explained that the physician should not only rely on the patient when making decisions because they are “collective” decisions, in the sense of conforming with the society’s common morality.
3. In order to explore the differences between the English and French approaches to advance directives I undertook a literature review aiming to identify and compare recurrent themes and specific terms employed in each debate regarding the legal status of ADs. This approach enabled me to explore differences between the countries and the moral preoccupations that each society associates with advance directives.
My findings suggest that the fact that ADs have binding force in English law rests on a socio-political and philosophical as well as religious tradition that accords a strong value to autonomy, rather than to solidarity. On the contrary, the weak status of ADs in French law, recommending that ADs be taken into account without obliging doctors to follow them, and the importance accorded to the physician’s responsibility to protect the patient’s physical well-being testifies to the prioritising of the latter over the individual’s preferences and wishes. In the same way, the conflict between two values generates different ethical preoccupations in each country. Whereas the arguments in England concern the respect for and the authenticity of the autonomous will, the French debate focuses on the risk that the physician could lose her sense of responsibility and solidarity with the vulnerable person if advance directives were legally binding (Horn, 2012a).
4. Are there common themes or a common understanding about advance decision-making for deployment in debates in the English and French contexts? Controversies regarding advantages and disadvantages of the legal recognition of ADs cover, in both countries, a variety of different issues. The key themes here seem to be: the problem of the authenticity of autonomy; the authority of ADs; the risk that physicians lose their sense of responsibility to take care of the patient; and, thus the risk of abandoning the patient. Whereas some of these issues are evoked in both England and France, they are not discussed in the same way in each country and some themes seem to emerge in only one country.
Scepticism towards ADs is not specific to a certain country but has been raised in various countries which I discovered during research visits to Germany and America (or something like this). It appears that most discussions in the broader international context, whether they concern problems in according “absolute” or “relative” authority to precedent wishes, raise concerns about the best protection of, and guarantees for, autonomous decision-making. This argument is the subject of debate in both England and France. This argument of ‘false’ autonomy was arguably a major reason why ADs in England were not included in statute law until the Mental Capacity Act 2005 (MCA), which came into force in 2007, and remains an important obstacle to their attaining obligatory value in France. Yet, unlike the French debate, the English debate introduced a new element, communication, which invites consideration of the authenticity of the purportedly autonomous statement, and thus the authority of ADs.
In France, although the protection of freedom of choice is an important argument, it appears to be not the only and apparently not the principal one. Indeed, there is great concern that physicians will be reduced to executors of patients’ wishes, without their own power of judgement, if they were to be obliged to respect ADs. Thus, patients could lose confidence in their physician’s professional competence and physicians could abandon their patients and discharge themselves of their duty to care for them. The idea that the doctor takes an active role in order to understand the patient’s wishes does not appear in the French debate. It is, on the contrary, argued that ADs may weaken both the family’s and physician’s sense of responsibility for the patient’s physical welfare and solidarity with the vulnerable person. Following this conception of responsibility, the duty to respect patient autonomy seems to be overridden by the principle of beneficence. There is no formal requirement that physicians should “listen to and consider the views of the patient”, as recommended by the General Medical Council in England.
5. How can this research contribute to debates and practices regarding advance decision-making in the European (and international) context?
First of all, it can be suggested that the reasons for the equally low number of written ADs are not the same in each country and point to different configurations of the doctor-patient relationship. This needs further investigation. Yet, generally it is striking that – regardless of the different legal status of ADs in each country – they are, in both countries, officially recognised legal tools which are however rarely used. This rare use of ADs questions indeed the validity and thus the legitimacy of these tools. Finally, one could put forward the hypothesis that ADs, as they are implemented to date, are not adapted to the situations the actors have to deal with in their daily practices.
Are there common perspectives to better adapt ADs to the practice and implementing of ADs as tools that aim to improve decision-making for incompetent patients in both countries?
When we think back, English physicians evoked concerns regarding the ability of ADs to express a genuine wish. Yet, it could be suggested that if English doctors were always to discuss future treatment preferences, then they could use these documents as additional elements to record these discussions in order to make sure that the patient’s will, as expressed in the directive, is genuine and applicable. What about France? Can ADs be reconciled with the French physicians’ rather protective society- and also power-focused perspective? It could be suggested that if ADs were seen as means to make decisions together with the patient, then this could be seen as an occasion to a) generate, through discussion and sharing of information, a consensus about “collectively” acceptable decisions; and b) maintain a certain power of the physician, in the sense of being the patients’ counsellors.
To conclude, the analysis suggests that ADs could eventually be better adapted to concrete situations in England and France, and probably beyond, if they were considered in a broader sense as means to generate discussion about general believes and values. Thinking of advance care planning and writing an AD should not be left to the patient alone. This could be promoted by introducing standard forms of ADs as part of the patient’s medical dossier, which are completed by the physician and the patient. Systematic discussion and standardised recording of these discussions, while not becoming distant from the patient, could improve patient information, the validation of the patient’s preferences, and communicate a much needed feeling of control at the end of life.
Yet, these are only hypotheses: we will need further empirical in-depth research in order to verify these hypotheses and to postulate valid theses for policy-makers.
Results and degree to which the objectives were met
Together with Richard Huxtable, the scientist in charge, I consider that the objectives of this project were met with satisfaction and in line with our previously fixed timetable. I hope to have given evidence of this in the preceding paragraphs. Additionally to the project aims, I have developed my skills in communicating research results to an interdisciplinary and international audience; I have furthered my knowledge about the English end-of-life debates and other topics in bioethics; I have developed and strengthened my network and collaboration with researchers from various countries; and I have developed my teaching skills.
List specific training received on scientific and technical aspects
See work performed for objective 1.
b) New objectives established during the course of work and new lines of research
As stated above, the weak implementation of ADs in England and in France suggests that these directives as they are promoted to date are not sufficiently adapted to the concrete situations the actors have to deal with. Considering the various differences between both countries, the maladjustment between theory and practice appears, however, to rely on different configurations of the doctor-patient relationship in each country.
Furthermore, the analysis suggests that an in-depth physician-patient discussion about treatment preferences at the end-of-life necessarily takes place in neither of the countries. Though English physicians revealed that they approach these issues as often as possible, the fact that only few patients write an AD and doctors are concerned that such a directive could not express the genuine will seems to point to an insufficient communication between doctors and their patients. On the other hand, French physicians explained that ADs do not have a place in French practice and they think that many patients want their doctor to make important decisions for them.
The study focused on physicians’ opinions and experiences as reported in interviews, yet we do not know what happens in the day-to-day practices in the hospital services in each country. We lack also knowledge about the views of, and interactions between, patients, families, nurses and doctors.
In order to deepen the understanding of interactions between the different actors, ethical problems that emerge in daily practices, and current practices, I wish thus to continue this research by conducting ethnographic fieldwork involving direct observations and further interviews with physicians, patients and families.
Furthermore, I seek to widen the knowledge base, by including a third country, Germany, which offers a different approach to ADs to both France and England. In Germany, a law was adopted in 2009 which acknowledges, like the English law, the binding force of ADs. Prior to this law, the jurisprudence was in favour of respecting the patient’s anticipated will. In spite of these similarities between Germany and England, it can be supposed that the determination of the patient’s will is underpinned by different principles and concepts of autonomy, solidarity and responsibility in each country.
Such in-depth qualitative research should enable me to test the hypothesis that emerged from this project and to postulate valid theses for policy-makers. Such research would contribute in a broader sense to a much needed and robust understanding of end-of-life care in cultural contexts.