Live well, die well

an international cohort study on experiences, concerns and preferences of patients in the last phase of life: the research protocol of the iLIVE study.

Authors

Yildiz, B., Allan, S., Bakan, M., Barnestein-Fonseca, P., Berger, M., Boughey, M., Christen, A., De Simone, G. G., Egloff, M., Ellershaw, J., Elsten, E. E. C. M., Eychmüller, S., Fischer, C., Fürst, C. J., Geijteman, E. C. T., Goldraij, G., Goossensen, A., Halfdanardottir, S. I., Haugen, D. F., . . . Zambrano, S.C and van der Heide, A. (2022).

Abstract

Introduction Adequately addressing the needs of patients at the end of life and their relatives is pivotal in preventing unnecessary suffering and optimising their quality of life. The purpose of the iLIVE study is to contribute to high-quality personalised care at the end of life in different countries and cultures, by investigating the experiences, concerns, preferences and use of care of terminally ill patients and their families.

Methods and analysis The iLIVE study is an international cohort study in which patients with an estimated life expectancy of 6 months or less are followed up until they die. In total, 2200 patients will be included in 11 countries, that is, 200 per country. In addition, one relative per patient is invited to participate. All participants will be asked to fill in a questionnaire, at baseline and after 4 weeks. If a patient dies within 6 months of follow-up, the relative will be asked to fill in a post-bereavement questionnaire. Healthcare use in the last week of life will be evaluated as well; healthcare staff who attended the patient will be asked to fill in a brief questionnaire to evaluate the care that was provided. Qualitative interviews will be conducted with patients, relatives and healthcare professionals in all countries to gain more in-depth insights.

Ethics and dissemination The cohort study has been approved by ethics committees and the institutional review boards (IRBs) of participating institutes in all countries. Results will be disseminated through the project website, publications in scientific journals and at conferences. Within the project, there will be a working group focusing on enhancing the engagement of the community at large with the reality of death and dying.

Trial registration number NCT04271085.