The final wellbeing

According to Pivodic, the research grant, worth nearly 1.5 million euros, will be used to answer very important questions about how people experience the end of their lives. "For too long, we have assumed that people with similar diagnoses – such as cancer, heart failure or dementia – have similar symptoms and problems as they approach death. In reality, the end of life is no different from other stages of life: it is different for each of us."

Pivodic's research project is based on the idea that the end-of-life journey of older people is determined not only by the disease they have, but by the circumstances of their lives as a whole, including their social contacts, where they live, and how they understand and view their health and illness. "To understand how the health of older people changes towards the end of life, when they need support and how we can improve their well-being, we need to understand more about their lives and not just their illness."

For the research project – called TRAJECT – Pivodic and her team will follow approximately 280 people aged 70 or older who have a chronic illness and are likely to be in their final year of life. Over the course of a year, every two months, these participants will answer questionnaires about their physical, psychological, social and spiritual well-being. Approximately 40 of these participants will also be invited to share their personal stories about their health and illness. By combining the questionnaires with the personal stories of people at the end of their lives, Pivodic expects to gain much more insight into how people experience the final stage of life and how we can best support them.

“My goal is not only to learn what end-of-life processes look like for me as a researcher, but also what they mean for the people who experience them,” says Pivodic. “I want to know which experiences at the end of life are shared by many people and which are completely unique. Why do some people have a better death than others? Ultimately, this knowledge will help us improve palliative care by better understanding who needs what support and when. It will also help us look beyond just medical needs when considering the end of life and take into account people's social and even existential needs."

"This project fits perfectly into the rich VUB tradition of end-of-life research. Our End-of-Life Care Research Group, a collaboration with Ghent University, is one of the largest in Europe, with around forty researchers. Without ERC funding, this type of longitudinal fundamental research would be very difficult. The ERC has great confidence in us. They expect the project to have a major impact, but they give us researchers a lot of freedom in how we achieve our goals."

Pivodic hopes not only to help improve care for the dying, but also that her project will lead to more research funding for the end of life. The TRAJECT project is one of the few studies on the end of life that has received one of the European Research Council's major grants. "Money is being invested in research into different stages of life to understand how people's lives can be improved, ranging from early childhood to adolescence, working age and retirement. It should be no different for the end of life."