Experiences and preferences of people in the last phase of life: results from the 11-country iLIVE Project

Recruitment, follow-up and survival in an 11-country cohort study of patients in the last days of life and their relatives

Dr Maria EC Schelin, Lund University, Sweden

This talk describes recruitment, follow-up and survival in a an 11-country cohort study of patients’ and relatives’ expectations, concerns and preferences at the end of life.  Patients were included on the basis of an adapted “surprise question” to assess patients' end of life status.  We collected patient and relative questionnaires (baseline and 1 month) and searched medical records for the date of death.  We found 11% of the screened patients eligible for inclusion and of those 1509 chose to participate, i.e. 6% of those initially screened.  699 patients (49%) participated in the 1-month follow-up, with proportions varying according to survival time, from 20% if the patient died at month 2, to 75% if the patient died at month 6.  

Death and dying in the 21st century: Preferences and concerns of patients in the last phase of life

Berivan Yildiz, Erasmus University Medical Centre Rotterdam, The Netherlands

Preferences and concerns about the last phase of life are moderated by social perspectives and cultural factors.  Few studies have assessed variations in the preferences and concerns among patients with a wide range of diagnoses in the last phase of life at an international level. The results of our study show that patients highly valued quality of life, involvement in decision-making, and more openness about death and dying in society. Country and sociodemographic differences were observed for most preferences and concerns. These findings call for more open discussion about death and dying, both during medical consultations and in public spaces. 

How do patients with a life-limiting disease deal with temporality? An international qualitative study

Melanie Joshi RN MA, University of Cologne, Germany

In which time level are patients with a life-limiting disease oriented, and how do they deal with temporality?  In this presentation, Melanie Joshi will share insights from 57 in-depth interviews with end-of-life patients in 10 countries and the themes that emerged:  

• concerning the past - remorse and regret, nostalgia, and coming to terms with past choices
• concerning the present - feeling grateful for being alive, a time for farewells, and living for the day
• concerning the future - worries about the future, to miss out, hope, ideas about death and dying, and planning the near future
• concerning the future after death - not being there, worries about loved ones, and preparations for a future after death. 

ABOUT THE SPEAKERS

Dr Maria EC Schelin MSc PhD

Maria is an associate professor of epidemiology with training and an interest specifically in register- and cancer epidemiology.  She has worked at the Institute for Palliative Care at Lund University, Sweden, since 2017, primarily with research in palliative care, end-of-life care and the Swedish national care guide.

Berivan Yildiz MSc

Berivan is a PhD candidate at Erasmus MC University Medical Center in Rotterdam, studying contemporary experiences of patients in the last phase of life and their relatives.  She currently combines her PhD trajectory with a job as a policy officer at Agora, a national institute for palliative care in the Netherlands, addressing the social dimension of death and dying.

Melanie Joshi RN MA

Melanie is a registered nurse, holds a Master's degree in Latin American Studies and Social Sciences, and works as a doctoral candidate in the Interdisciplinary Public Health Sciences in Palliative Care Research at the University of Cologne, with a focus on qualitative methods.

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