Dying ‘on time’ in dementia

The fear of suffering dementia may lead to people signing an Advance Euthanasia Directive to make provision for health care decisions in the event that he/she becomes unable to make those decisions. However, Advance Euthanasia Directives are rarely adhered to in the case of dementia because the symptoms of dementia conflict with the due care criteria; a person requesting euthanasia must be able to confirm this request at time of death and must be undergoing unbearable and hopeless suffering. Once dementia has progressed, the euthanasia ‘wish’ can no longer be confirmed, and assessing suffering in a person with dementia is nearly impossible. This means that for a euthanasia request to be successful you have to perform the euthanasia early enough, while the patient is still cognitively competent. The risk in doing so is that the patient may lose years of their life that could have been full of quality. Postponing euthanasia in dementia could result in euthanasia not being possible and the person with dementia living a life that they did not want. This paper addresses how to decide what ‘on time’ is when it comes to dying with dementia through literature review, information visualisation and public debate.