Muskan Jain, Victor Jimoh, Vera Karulina, and Dewi Lagerberg
Palliative patients, their families and caregivers often struggle with discussing digital legacy due to emotional sensitivity and a lack of tools. This gap results in missed opportunities for patients to express their wishes and overwhelms loved ones. This research paper examines the benefits of card-based conversation tools for stakeholders, with a focus on digital legacy management. The project team shared an online survey with individuals of different ages and backgrounds about public awareness, attitudes, and needs related to digital legacy, specifically how individuals manage their online accounts, files, and personal data in the context of end-of-life planning. We interviewed our stakeholders – the palliative patients facing end-of-life who may want to document or discuss their digital legacy, loved ones supporting patients emotionally and practically and healthcare providers (nurses, hospice staff, therapists) facilitating end-of-life conversations. To learn more about their digital legacy and how, or if, they utilise existing tools to manage it. Our research context was timely, with a National campaign, ‘Data After Death’, emphasising the importance of digital legacy planning in the Netherlands. The campaign revealed that 85% of Dutch people must have their digital legacy in order. 70% have never heard of “digital legacy.” Supported by insights from the literature review and other research methods, we designed Conversations That Matter – a toolkit to support end-of-life discussions through card-based prompts and a digital extension.
Keywords: digital legacy, end-of-life planning, card-based tools, palliative care, conversation design, hybrid toolkit, commemorative hybridization, grief technology, user-centred design, systems thinking