The digital legacy in end-of-life care: Unspectacular and meaningless, or not enough recognized? An online survey on the attitudes and personal experiences of professionals and volunteers
Authors: Meißner Anne , Mahaj Dafina 
Published: August 2024

Abstract

Title
The digital legacy in end-of-life care: Unspectacular and meaningless, or not enough recognized? An online survey on the attitudes and personal experiences of professionals and volunteers
Background
The digital era has transformed the way individuals construct and perpetuate their identities, leaving an indelible mark not only in the analogue but also in the digital realm. The digital legacy, comprising online artefacts and virtual traces, plays a pivotal role in shaping one's personality and life narrative. Recognizing its impact on the bereaved and the dying and understanding the nuances of digital legacy are crucial for providing meaningful end-of-life care. Despite the increasing importance of this phenomenon, there is a substantial research gap, and a comprehensive discussion regarding the relevance of digital legacy for dignified and value-oriented end-of-life support is lacking in Germany.
Methods
Based on the recommendations of the German Federal Ministry of Justice regarding the handling of digital legacy, a 34-item questionnaire was developed. A nationwide online survey was conducted using a random sample. Participants were recruited through palliative and hospice organizations with the aim of capturing attitudes, perceived needs, competency requirements, personal experiences and assessments of various professional and occupational groups, including nursing, medicine, social work, and volunteering. The collected data were analysed using descriptive statistics, and four free-text options integrated into the survey were evaluated through content analysis.
Results
A total of 396 people participated in the survey, mainly professionals (42.3%) and volunteers (30.8%). For approximately one-quarter of the respondents (26.9%), clear identification was not possible; they made use of the option 'other'. The majority of respondents were female (82.3%), over 50 years old (74.5%) and had > 5 years of professional or work experience (75.7%), predominantly in outpatient care (66.0%). The study showed that the majority of respondents rated the relevance of the digital legacy as high. Moreover, according to 85.8% of the respondents, it does not receive enough attention in end-of-life care. The way in which this is dealt with varies considerably and is ambivalent in some cases. There is uncertainty with regard to professional responsibilities and the need for guidance, although most respondents perceive their own skills as inadequate and seek to broaden or deepen their knowledge (90.1%). Additionally, it is evident that there is little engagement with one's own digital legacy. The free-text responses illustrate a lack of awareness, uncertainty and the desire for further training and supporting materials.
Conclusions
The discrepancy between the recognized importance and the lack of direct engagement with one's own digital legacy, as well as the uncertainties in supporting people at the end of their lives, becomes clear and underscores the need for specific programmes that close existing knowledge gaps and promote awareness of how to handle the digital legacy in a valuable and dignified manner in the context of end-of-life care.