Summary

Complex disabilities, usually of a neurological cause, result in a combination of physical, cognitive and behavioural disorders. The disabilities not only affect the individual but also the family and to some extent society. The impact of these disabilities creates a range of ethical dilemmas in the areas of confidentiality; decision making for those who lack mental capacity; advance statements; decisions about withholding or withdrawing treatment; and involvement of people with disabilities in teaching and publications. All of these factors have an impact on professional and informal carers, while creating a challenge for statutory bodies in their responsibilities towards people with disabilities. Although these dilemmas may be difficult to resolve, there are certain ethical principles that can help in the decision making and caring process.

Introduction

Complex disabilities are usually due to neurological disorders, especially those affecting the brain. The disabilities are complex in that they are a combination of impairments affecting motor, sensory, cognitive, behavioural and social functioning. Ethical principles of beneficence, non-maleficence, autonomy and justice all play a part in decision making in complex disabilities but are not straightforward (Beauchamp and Childress, 2001). Ethical decisions will largely be influenced by whether or not the person has the capacity to make decisions and whether the condition they have is static or deteriorating.

Lack of mental capacity

The principle that a person must be assumed to have capacity unless otherwise proven is one of the main bases of the 2005 Mental Capacity Act (DCA, 2005). Any question of ‘does this person lack mental capacity?’, however, requires the retort ‘for what?’. Global lack of capacity is rare, except in the vegetative/minimally conscious states and possibly late stage dementia. A person may have capacity to decide which jumper to wear but not whether to have medical treatment; to decide whether to listen to music but not whether they need a bath; or to understand that they need treatment but not the implications of taking part in a research study. There is also the difficulty that mental capacity may fluctuate from day to day or hour to hour.

Fundamental principles are that the patient must understand what the medical treatment is; that somebody says it is needed; why the treatment is proposed; in broad terms the nature of the proposed treatment; the principal benefits and risks; and the consequences of not receiving the proposed treatment.