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Evaline – Evaluating the powers of persons with a learning disability to judge medical decisions

Background and aims

The new Adult Protection act calls upon legal guardians, families and carers to take greater account of the wishes of the individuals concerned when medical decisions are taken. To date there has been no appropriate tool for establishing how well equipped a person with a learning disability is to assess a specific medical issue.  

The aim of the proposed project is to develop and evaluate an instrument for establishing the powers of judgement of individuals with a learning disability with regard to medical decisions. A specific tool is to be designed, for the use of carers and family but also physicians, that makes it possible to assess the powers of individuals with a learning disability to form judgements about medical decisions. This is intended to strengthen the opportunities for persons with a disability to exercise self-determination in medical matters.


Four subjects with a learning disability (two of them with a severe disability) were questioned on film about their judgement of a selected medical issue. Twenty carers and twenty family members were selected to watch these films and assess the subjects’ powers of judgement. The data is evaluated using the Kappa coefficients described by Fleiss (1971), Krippendorf’s Alpha and descriptive statistics.


The study shows over all a moderate inter-rater reliability. Significant differences in the ratings were found between physicians and carers. All participants see the instrument as useful to assess the competence to consent to treatment of people with ID.

More effort must be done to find ways to assess capacity of consent to treatment of persons with ID. While assessing the competence of consent to treatment of a person with ID who rarely uses spoken language, it is important for carers and physicians to discuss their different opinions regarding the person’s capacity. These procedures are time consuming and should be planned in advance.



Project Management

Prof. Dr. phil.  Wicki



Forschung und Entwicklung
Tel: +41 44 317 11 81

zfe[at] zfe