Decision-making about risk in people with epilepsy and intellectual disability.

AIM This paper reports a study of the process of risk-evaluation and subsequent decision-making in the care for people with epilepsy and intellectual disability. BACKGROUND People with intellectual disability and severe epilepsy are at risk of suffering accidents during seizure, and often need protection. Whether to implement protective measures or to accept risk is a complex decision, burdened with uncertainty. Taking risks can lead to dangerous, sometimes life-threatening situations, while protective measures are restrictive and may raise ethical concerns. METHODS In 2003 a multiple embedded case study was conducted with 15 clients. In each case, the client, their representative, care-manager and nurse were interviewed. FINDINGS The decision about whether to accept risks or implement protective measures was always taken in relation to specific events, and varied from medication and supervision to total restriction of the client's mobility. Decision-making was influenced by frequency, type, predictability and consequences of seizures; the effectiveness and practicability of protective measures; additional disabilities; characteristics of the client and their representative; and characteristics of nurses and organization. The predominant factor was the attitude of the representatives. They determined the relative weight of the other factors involved. CONCLUSION A systematic approach to risk management could considerably improve the balance between risk and quality of life. Continuous evaluation would make it possible to tune the application of protective measures to the severity of the seizures at any time, and to avoid protective measures being maintained only because care providers have become accustomed to them. A systematic assessment of clients' capabilities to participate in this complex decision-making process is equally indicated.