Using design to encourage conversation about euthanasia in dementia

BACKGROUND. Dementia is chronic, progressive and affects several brain functions, including memory, thinking, orientation, calculation, learning capacity, language and judgement. Usually the symptoms are accompanied by deterioration in emotional control, social behaviour or motivation. It affects 50 million people worldwide with 10 million new cases each year and presents as a collection or consequence of many illnesses, including Parkinson's disease, vascular dementia and Alzheimer's disease; it is a terminal disease. PURPOSE. The fear of living with dementia is driving requests for euthanasia but this is a complex issue because the symptoms of dementia clash with the due care criteria for euthanasia; unbearable suffering is difficult to assess in dementia and it is hard for a person living with dementia to consent to euthanasia at the point of death because of the decline in their cognitive functioning. This thesis explores if, and how, design can be used to stimulate conversation on euthanasia in dementia in the Netherlands. DESIGN. Prompts were designed on four topics extracted from a systematic literature review: Suffering, Autonomy, Timing and Planned Death. Three of these prompts were presented as speculative designs in the form of short films and one was a piece of information design, all were carefully constructed based on literature and expert advise to help formulate issues beyond abstract thought. DATA COLLECTION. Survey and interview data were collected using these designs with a carefully selected group of expert participants; people familiar with the Dutch practice of euthanasia and who had personal or professional experience with dementia. An opportunity to inform a wider public debate was offered with some of the designs being used at Pakhuis de Zwijger in Amsterdam on two occasions in the winter of 2018, and in round-table discussions at the Royal Dutch Medical Association in March 2019. RESULTS AND CONCLUSION. Design did further the conversation, the prompts were seen as useful thought experiments and helped participants to formulate their thoughts better. Dementia was still seen as fairly hopeless, but may improve with better professional care. Non-professional carers were seen to be unable to carry the burden of dementia care because this is causing a lot of other health related problems for the carers. Euthanasia could be improved by writing better advance euthansia directives and more detailed do not resuscitate agreements. It was concluded that physicians need much more support in initiating end-of-life conversations, in order to prepare families and their loved-ones for decision making for end-of-life scenarios.