Should physical health checks1 be introduced for people with intellectual disability, and what are the ethical implications?
Standard health care for people with intellectual disability is unquestionably sub-optimal, with reports of increased morbidity and mortality.2 Assessment of impairment and its context, with consideration of inclusion and accessibility, must be done in general practice as elsewhere.
The major risks of obesity are well known. Obesity is commoner in people with intellectual disability than those without. Many disabled people do not shop and are provided with easily prepared food both nutritionally inadequate and high in fat and sugar; lack of exercise and comfort eating can exacerbate.
However, is it ethical to actually force intellectually disabled people to lose weight simply because, in biomedical terms, it is good for them? Such a strategy would be seen as a significant infringement of personal rights of the general population. We all have the right and are sometimes encouraged to participate in destructive or risky behaviour, everything from cigarette smoking to bungee jumping.
Classical rights theory acknowledges that with rights come correlative duties. If we choose to smoke cigarettes, we should be prepared to bear the responsibilities, and possibly the consequences, of so doing. If this connection between rights and responsibilities depends on the cognitions that support autonomous choice, then those with intellectual limitation or cognition distorted by mental illness may bear less responsibility for outcomes than those of full capacity. There has recently been some discussion on proposed changes to mental health legislation, and the differences between decision making capacity (a function of the brain) and ability (a function of the mind).3
A modern analysis of best interests, which is meaningless without incorporation of autonomous choices and decision making, should be a much broader notion, and involve an intellectually disabled person fully. Description of best interests, traditionally approximated to best medical interests, will involve quantitative risk measurements like BMI/lipids, but surely must also include wider social and psychological and perhaps aesthetic and spiritual considerations; it is sometimes difficult to get QOF points in these areas.
Decisional capacity, including risk decision making, is usually assessed in the context of treatment options and there is a large body of case law to assist the clinician; autonomous decisions in screening appear to be another thing entirely, although there has been medicolegal litigation relating to antenatal screening.
If nothing else, a person at the time of screening, although apparently well, hopes to ameliorate a future situation. There may be difficulties with: the presentation of symptoms and association with risk; processing of complex data sets; awareness of the concept of future; and contrasting perspectives on health.
Risk as a concept appears to present difficulties to most people and to correlate risk reduction and future ill-health may be more difficult for people with intellectual impairment. To compound things, standard texts on medical ethics are fairly vague on autonomy and intellectual disability. On autonomy, Seedhouse memorably states that, ‘when there is very little of a good thing even the smallest addition can be priceless.’4
We therefore argue that people with intellectual impairment should be maximally involved in screening decisions, and should moreover be similarly engaged with lifestyle changes or treatment decisions which ensue. A useful analogy flows from the work of Alderson who, in examining healthcare decisions in children, described assent to treatment being desirable: something more than rather mechanistic consent.5
GPs should seek to create an environment in which maximally autonomous decisions can be made. Potential health gains may need to be balanced against losses in autonomy or rights, and thoughtful decisions respected, whether these have been made by the person alone or with input from family, carers or a multidisciplinary team. Communicative and explanatory skills will be essential.
Lifestyle advice and rigorous documentation in primary care of BMI and other health markers among people with intellectual disability may well have benefits on the health of people with intellectual disability. We might not wish our patients prematurely to ‘die with their rights on’,6 whatever their intellectual status.
- © British Journal of General Practice, 2006.