Press releases

Press Contact: Jackie Waters

23 February 2005

The recent newspaper reports and the earlier documentary regarding Mr Leppard and that the fact that he was detained in hospital under the English Mental Health Act (MHA) have brought to the public's attention the major problems faced by people with PWS and their families once the person with PWS is an adult and wishes for an independent life. The documentary vividly illustrated his very severe obesity and the fact that he would eat large amounts of food that would inevitably result in continuing weight gain to the extent that his physical health, quality of life and his life were all potentially compromised. The recent news report did not attempt to address this very difficult balance between respecting his apparent wish to live an independent life and the very real risk of life threatening obesity. It is very possible that the media that rushed to contemn his detention in hospital would also be the first to ask why nothing was done if he had died from the effects of his severe obesity.
 
What are the options and is the use of the Mental Health Act (MHA) ever appropriate? It is clearly not possible to comment on this specific situation as only those directly involved are truly aware of the wider picture. There are however general points that are worth emphasising as they help make sense of the limitations and options available in such a situation. First, in democratic countries adults (those 18 years and over) have a right to make decisions that affect their lives. In the case of health treatment it is consent that renders an investigation or some other 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. Secondly, to treat an adult who has the capacity to consent without his/her consent would be unlawful and probably an assault. An exception to this is in the treatment of a mental disorder where the MHA can be used under very specific circumstances even if the person has the capacity to make that decision for him/herself. Thirdly, in England we rely on case law (Common law) for guidance for what we do if a person lacks the capacity to consent (e.g., because of unconsciousness, or because his/her mental ability is affected by dementia, intellectual impairment, mental illness etc). Under such circumstances treatment can go ahead, even though the person has not consented (as he/she lacks capacity), as long as it is in his/her best interest. The present Mental Capacity Bill going through Parliament at present will provide a proper statutory framework for such situations, if it becomes law. It will also provide a means of appeal in case of disagreements.
 
For adults with PWS there is therefore potentially a real difficulty. Ideally, as they leave school, a care strategy is devised whereby 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 appeared to arise with Chris, occurs. Specifically, in the absence of a person's consent to a particular social care strategy there are 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.
 
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 conjole, 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. This has been accepted in a case in Scotland but remains problematic in England because of the lack of statute at present. 3) to use the powers of the MHA to lawfully detain him/her in hospital even though he/she is not consenting to such a course of action. It is clear that such a course of action is potentially possible as the MHA is NOT just about mental illness but also covers those with other mental disorders, such as learning disabilities (mental retardation). There are also Guardianship Powers in the MHA, which can be used in a community setting, but the conditions for their use are such that it's use is not always possible in those with PWS.  The question is therefore not can it be used, but rather  should it be used?
 
The balance in this situation is always this tension between respect for autonomy and need for care. The solutions is ideally through co-operation and consent but if that is not possible there are limited options. Key to this is whether PWS is 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 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 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 is in his/her best interest. In addition, the MHA may have a part to play in acute situations and only then as part of a longer term strategy to establish an appropriate social care placement ideally locally. The MHA certainly can have a place to play in the case of acute psychotic illness as that which can occur, particularly in those with PWS due to disomy.
 
What are the lessons from this situation? First, support is complicated and there may be a very difficult tension to resolve - autonomy versus care. Secondly, if appropriate local social care services were available it maximises the chance that such situations would not arise as people with PWS maybe more willing to agree to live in an appropriate environment. Thirdly, difficult decisions may have to be made. Knowledge of PWS is key to this.
 
Professor Tony Holland, President PWSA (UK)

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