Good care and advance directives: an empirical-ethical research into the practice of dealing with advance directives and the way people with dementia, in particular Alzheimer's disease, value their situation.
Background
As a consequence of our ‘greying’ society, the amount of people making use of advance directives in order to influence their own end-of-life, is continually rising. In the Netherlands the non-treatment directive has a formal legal status. Furthermore, a continuous and growing debate is taking place on accepting advance requests for euthanasia in cases of dementia, as life with this condition is often seen as unworthy. Despite the evidenced fact that these individuals can’t be ‘stigmatised’ as ‘incompetent’, the patient’s perspective in this debate is remarkably absent. Although a gradual increase in studies involving personal experiences of living through dementia can be observed, they seem to lack a focus on themes considering advanced requests for euthanasia, nor has very much attention been given to the specific dilemma’s of the execution of these requests in practice.This study aims at clarification of both themes. This includes first of all research into the daily practice of dealing with advance requests for euthanasia for both patients, relatives and professionals. Secondly, an explorative empirical study regarding the way individuals with dementia experience their situation will be carried out by making use of interviews with those suffering from early-stage Alzheimer’s disease. The study intends to contribute to the debate and to stimulate the development of ‘good care’ for people suffering from dementia, including end-of-life decisions incorporating euthanasia.