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The Cohort Study: A way to know more about our preferences about death and dying

One of the main aspects of the iLIVE Project is that we want to make a difference. We want to create a better environment in Palliative Care. Patients need to be as comfortable as is possible, not only in a physical sense, also in a psychological and spiritual way. The aim is to contribute to high-quality personalized care at the end of life by providing in-depth understanding of the concerns, expectations and preferences of dying patients and their formal and informal caregivers.

To achieve this, it is necessary to know how we perceive our needs when we are in hospital or in a hospice. What expectations do patients have, what are their preferences and how can care teams best mitigate suffering and discomfort. But also how patients experience the whole process and what are the needs of relatives and health professionals. This study is carried out in ten of the countries represented in iLIVE.

The first working group of our study, WP1, is concerned with understanding these needs. To do so, we have conducted a comprehensive questionnaire that allows not only patients, but also family members, friends, caregivers and healthcare professionals to share their needs, fears and expectations in an open and supportive environment. This close and respectful work is essential, which is why the questionnaires have undergone a long process of testing and piloting before the actual study began.

The result will provide a quantitative overview of experiences and concerns, expectations and preferences around dying and end-of-life care in each different country, and also a qualitative in depth understanding of this issues. This results will then be shared with the scientific community, but also with policy makers, to create a difference in laws and regulations.

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