A Question of Ethics

by Professor A.J. Holland (UK) Department of Psychiatry, University of Cambridge

This article is based on a paper written in response to the death of an adult with PWS who had become very severely obese. This case of Chris had earlier received national publicity as he had briefly been detained in hospital under the English Mental Health Act. The national newspaper concerned had campaign against this, with both Chris's and his mother's support, arguing he should be free to live where he chooses and not have to diet.

The situation in the UK and in democratic countries in general is that adults (those 18 years and over) have a right to make those decisions that affect their lives. In the case of health treatment it is individual consent that renders an investigation or a health procedure, lawful. For a person to give valid consent he/she must be appropriately informed, have the capacity (ability) to consent and be able to communicate his/her decision and be free from coercion. To treat an adult who has the capacity to consent without his/her consent would be unlawful and probably an assault. In different countries the policies and practices and legislation of that country will address issues of decision-making in children or the particular circumstances when the above may not apply and, for example whether adults may be admitted to hospital to have treatment without their consent, for example, for assessment and/or treatment for mental illness.

For adults with PWS there is potentially a real difficulty in this transition from being a child and under the responsibility of parents, to being an adult having the opportunity to make their own choices. Ideally, as someone with PWS leaves school, a care strategy is devised whereby with their agreement they move into a food supervised setting that can ensure considerable independence but can manage the food environment - in this respect prevention of obesity is by far the best option. However, if the person concerned does not wish for this and/or such options are not available the type of problem that arose with Chris, occurs. Under the legal framework of England and Wales at the time of Chris's death (prior to the passing of the Mental Capacity Act 2005), there were only three possible approaches. These were summarised in our paper in the Journal of Medical Ethics: Holland, A.J. and Wong, J. (1999) Genetically determined obesity in Prader-Willi Syndrome: The Ethics and Legality of Treatment. Journal of Medical Ethics, 25: 230-236.

With the Adults with Incapacity (Scotland) Act 2000 and the Mental Capacity Act (England and Wales) 2005 the situation within these three countries have changed, although essentially there are still just three options. These are: 1) to accept that dieting is a matter of individual choice for people with PWS, as it is for the rest of the population, and therefore one can inform, encourage and cajole, but not force dieting; 2) to determine whether the person has the capacity to make such a decision and if it is determined he/she does not then there is the responsibility to act in his/her best interests - if necessary (in England and Wales) referral to the Court of Protection under the Mental Capacity Act may be required for their ruling on the issues; and 3) to use the powers of the Mental Health Act (or equivalent in other countries) to lawfully detain the person with PWS in hospital. Whether these options are appropriate and possible in any given country will depend upon the laws of that country. For some countries Guardianship legislation may, for example, be available and appropriate, at least in some circumstances.

The balance in this situation is always this tension between respect for autonomy and need for care. The solution is ideally through co-operation and consent but if that is not possible there are only limited options as described above. Key to the argument about capacity to make decisions is whether PWS is seen to be different from general obesity. In the above paper we argued that people with PWS may be different, whilst they may have the capacity to consent to many things in their lives, however, when it comes to food the insatiable hunger so distorts their thinking that it renders than incapacitated with respect to decisions about dieting. Under those circumstances, it can be argued, that there is a duty to take over control of dieting in their best interests. Thus, one could defend limiting access to food on the grounds that it was in his/her best interest. However, as Chris's case illustrated the framework provided by the law is only a small part of the issue - of perhaps greater importance is having the ‘PWS informed' support and services available in the first place.

What are the lessons from this situation of Chris? First, support is complicated and there may be a very difficult tension to resolve - autonomy versus care. Secondly, if appropriate local social care services had been available it would have maximised the chance that such situations would not have arisen as Chris and others with PWS may have been more willing to live in an appropriate environment. Thirdly, difficult decisions may have to be made and if necessary legal advice sort to resolve such problems. Knowledge of PWS is key to this.

Professor Tony Holland, President PWSA (UK)