Design as a Provocation to Support Discussion About Euthanasia: The Plug

Abstract

Dementia affects 47 million people worldwide []. It is a collection or consequence of many illnesses with symptoms including deterioration in memory, thinking and behaviour; it is a terminal disease. The fear of dementia may lead people to signing an Advance Euthanasia Directive (AED). AEDs are rarely adhered to because the dementia symptoms conflict with the due care criteria; a person requesting euthanasia must be able to confirm the request at time of death and must be undergoing hopeless suffering. Once dementia has progressed, the euthanasia ‘wish’ can no longer be confirmed, and assessing suffering in a person with dementia is hard. This creates difficulties for physicians supporting patient wishes. Speculative Design is described as a way to prototype other realities []. This paper describes a Speculative Design to explore patient autonomy for end-of-life decisions in dementia. A short video was developed to imagine the AED as an implant that would trigger a swift and painless death, once the conditions described in the AED were reached. Data were collected at the DementiaLab conference in Dortmund, Germany, September 2017. The workshop was attended by 15 participants of varying ages and backgrounds. The results found that the Speculative Design had potential to aid discussion between stakeholders, without each party needing to be a specialist. It sparked debate, but with a caveat about the importance of boundaries for awareness of the wider context and sensitivity to inherent bias.