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Agnes van der Heide: “We need to learn from the experience of COVID-19 now”

The coordinator of the iLIVE Project, Agnes Van der Heide, talks about the situation of the iLIVE Project and the changes that will come to this effort because of the COVID-19 outbreak.

What is the situation of the iLIVE project in the wake of the sanitary alert created by the COVID-19? How has the calendar changed? We were very near to starting the data collection for the cohort study, but whereas patient-related research is now impossible in virtually all clinical study sites, this start has to be postponed. We hope to be able to start later this year, but this is of course very uncertain. The COVID 19 situation addresses directly one of the main subject of the iLIVE Project: end of life treatments and procedures. Is this an opportunity to expand the study? The COVID-19 crisis may seriously affect the experience of death and dying of patients, relatives and health care professionals. Whereas the COVID-19 epidemic is probably not the last epidemic in the world, we need to try to learn from people’s experiences now. We have prepared a protocol and two online questionnaires to collect information on the experiences of family or relatives of deceased patients and of healthcare professionals or volunteers who were involved in end-of-life care for dying patients. We hope that many countries can participate in this study. How has perception of the study and its objectives changed with the new situation? Trying to get insight in people’s expectations, concerns and preferences around death and dying is more important than ever, given the fact that high quality healthcare for all seriously ill people is so clearly jeopardized. What is your current view on the situation of the project and the different Work Packages? We continue preparing for the start of the data collection, but a delay of at least six months is inevitable for most Work Packages.

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