The Problem/Issue
Anorexia nervosa is a serious mental disorder that raises questions concerning the use of compulsory treatment. Particular difficulties arise because a distinctive feature of the disorder is that patients have difficulty cooperating with attempts to help them to regain weight, even when their health is endangered. Moreover, many patients refusing treatment appear to possess the capacity to refuse treatment. At the same time they are often significantly ill and would benefit from treatment, whether or not they are at immediate risk of death. An additional difficulty is that this disorder typically strikes adolescent and young women, near the age of legal majority.

As a result, there are differing views amongst mental health professionals over whether and when to override treatment decisions made by patients with anorexia nervosa, and how to respect patient autonomy while protecting the best interests of patients with anorexia nervosa. Patients and their families in turn can become very frustrated with the health care system which may not appear to be protecting them adequately, or else may behave in an inappropriately paternalistic manner.

Competence, which is the ability to make valid treatment decisions, is central to this debate. We do not understand at present how having anorexia nervosa can affect competence in particular and the whole treatment decision-making process in general.

Patient centred
Three related research studies are being conducted in this area to explore the problems that patients and those caring for them may experience with regard to competence and treatment decision-making in anorexia nervosa.

A pilot project has already been conducted which involved in-depth conversations with a small group of young women who had anorexia nervosa, their mothers, using qualitative research methods. A subset of these young women are being followed up in a longitudinal study where their views on their own past experiences and decisions will be discussed with them, as well as their views in retrospect of their treatment. Yearly interviews are being conducted, which will finish 5 years after the initial interviews.

A larger scale cross-sectional study is currently being conducted, which is similar to the pilot project. Young women aged 13 to 25 years of age who have anorexia nervosa and their parents will be talking separately to the interviewer about the issues involved in making treatment decisions.

The views of patients and their parents are the basis upon which the ethical analysis will be conducted of the factors which are relevant to making treatment decisions when a person has anorexia nervosa. Their accounts of the problems they encounter both within themselves and in the health care system when treatment decisions are made, are informing the development of the survey of professionals’ attitudes.

Rooted in the real world
The source of data for this project is the views and experiences of patients and their parents themselves. These views are shaping the development of a new way of thinking about the way people make treatment decisions when they suffer from a mental disorder, how it can affect them adversely, but also how they are still able to be, and wish to be, active participants of treatment decisions. Furthermore, their accounts are informing our analysis of how health care professionals and treatment settings can also affect people’s ability to make treatment decisions.

It has become evident from our ongoing research with patients and their families that the health care professionals are important partners in the decision-making process. Our survey of professionals will seek to map out the range of attitudes towards anorexia nervosa and the use of compulsory treatment present in health care professionals from different settings who treat eating disorders.

Ethical analysis
This project involves the ethical analysis of the accounts of patients, the parents and professionals, to construct a better understand of the elements involved in competence to make treatment decisions in anorexia nervosa. The ethical analysis will also provide a better insight into the difficulties that people face when making decisions. Issues raised so far are: the ability to make decisions, in spite of being very thin and medically ill; the difficulty in applying facts to oneself in spite of good understanding; the shift in value systems which means some people with anorexia nervosa may quite reasonably come to different treatment decisions than other people might make; and the impact of anorexia nervosa on some people’s sense of who they are, which makes it hard to imagine life without it.

Outputs
To help patients and families directly:
We hope to develop methods which will help patients and their families think about treatment decisions, both on their own and together with health professionals.
We hope to develop methods by which we can run workshops which can empower patients and parents to express their wishes and needs to the health services which are delivering their care.

To improve professional/service delivery:
We hope to develop a framework which will help health care professionals to think treatment decisions through with patients and their families.
We also hope to develop a framework for the assessment of competence to make treatment decisions, so that professionals can distinguish between when patients are able to make their own treatment decisions, and when they should be helping to protect
patients.

To further the discipline of medical ethics:
This research is an example of a relatively new trend of empirical medical ethics, that is, medical ethics research using practical methods which measure the way things are in the world. This project uses traditional sociological methodology to explore medical ethical issues. Using such “ground up” methods enables us to push medical ethics away from its traditional methods of health professionals and philosophers deciding what both the problem and the answers should be, towards finding out exactly what the problem and its potential solutions are from people who have practical experience of living and working with these dilemmas. The use of a medical ethics analysis, however, will take this research beyond just describing the problems, to building theoretical frameworks which will in turn be useful for understanding the problems more clearly and devising practical and clear solutions.

The results of this research will be published in academic journals and presented at academic conferences as well as professional meetings. We hope that this will encourage more people to engage in this sort of practical research into medical ethical problems.

Key perspectives
Legal - the concept of capacity and competence; the use of compulsory treatment
Medical practice - how professionals view patients’ ability to make treatment decisions

For more information about this project contact Dr Jacinta Tan