End-of-life care decision-making from perspectives of patients, family members and healthcare professionals in 10 countries : a qualitative study within the iLIVE project
(2025) In Mortality- Abstract
Patients and families facing the end of life deal with constant health changes, making their ongoing involvement in care decisions vital yet often overlooked. The iLIVE project conducted a qualitative study across 10 countries, exploring the experiences of patients, family members, and healthcare professionals, enabling a comprehensive exploration of the experiences of end-of-life decision-making. The findings suggest that common emotionally driven motives among patients–to avoid suffering, to have agency and be engaged with others, to give and receive care–significantly drive decision-making. Secondly, patients and families need support in determining what is best for them over time, minimising unnecessary uncertainty through subtle... (More)
Patients and families facing the end of life deal with constant health changes, making their ongoing involvement in care decisions vital yet often overlooked. The iLIVE project conducted a qualitative study across 10 countries, exploring the experiences of patients, family members, and healthcare professionals, enabling a comprehensive exploration of the experiences of end-of-life decision-making. The findings suggest that common emotionally driven motives among patients–to avoid suffering, to have agency and be engaged with others, to give and receive care–significantly drive decision-making. Secondly, patients and families need support in determining what is best for them over time, minimising unnecessary uncertainty through subtle communication that requires skills and time, considering multiple motives, and the likely future, while also acknowledging its inherent uncertainty. This frames decision-making as a process to determine the most optimal course of actions in a specific context to meet these needs as much as possible and cope with the distress arising from growing challenges to do so. However, these needs are often marginalised in settings dictated by systemic and contextual characteristics, heightening distress for everyone involved. The complexity of end-of-life decision-making, particularly when time is limited, poses challenges in finding the right focus, yet it remains imperative.
(Less)
- author
- organization
- publishing date
- 2025
- type
- Contribution to journal
- publication status
- epub
- subject
- keywords
- communication, Decision-making, emotional needs, end-of-life care, international, multi-perspective, qualitative, uncertainty
- in
- Mortality
- publisher
- Routledge
- external identifiers
-
- scopus:85214934508
- ISSN
- 1357-6275
- DOI
- 10.1080/13576275.2025.2449900
- language
- English
- LU publication?
- yes
- additional info
- Publisher Copyright: © 2025 Informa UK Limited, trading as Taylor & Francis Group.
- id
- b34557e1-a641-44d9-b74f-d6b8a5d83af0
- date added to LUP
- 2025-03-14 11:14:25
- date last changed
- 2025-05-09 15:44:12
@article{b34557e1-a641-44d9-b74f-d6b8a5d83af0,
abstract = {{<p>Patients and families facing the end of life deal with constant health changes, making their ongoing involvement in care decisions vital yet often overlooked. The iLIVE project conducted a qualitative study across 10 countries, exploring the experiences of patients, family members, and healthcare professionals, enabling a comprehensive exploration of the experiences of end-of-life decision-making. The findings suggest that common emotionally driven motives among patients–to avoid suffering, to have agency and be engaged with others, to give and receive care–significantly drive decision-making. Secondly, patients and families need support in determining what is best for them over time, minimising unnecessary uncertainty through subtle communication that requires skills and time, considering multiple motives, and the likely future, while also acknowledging its inherent uncertainty. This frames decision-making as a process to determine the most optimal course of actions in a specific context to meet these needs as much as possible and cope with the distress arising from growing challenges to do so. However, these needs are often marginalised in settings dictated by systemic and contextual characteristics, heightening distress for everyone involved. The complexity of end-of-life decision-making, particularly when time is limited, poses challenges in finding the right focus, yet it remains imperative.</p>}},
author = {{Kodba-Čeh, Hana and Lunder, Urška and Ásgeirsdóttir, Guðlaug Helga and Barnestein-Fonseca, Pilar and Bakan, Miša and Faksvåg Haugen, Dagny and Halfdanardottir, Svandis Iris and Joshi, Melanie and McGlinchey, Tamsin and Romarheim, Elisabeth and Tripodoro, Vilma A. and Veloso, Verónica I. and Víbora Martín, Eva and van der Heide, Agnes and Zambrano, Sofía C. and Yildiz, Berivan and Rasmussen, Birgit H.}},
issn = {{1357-6275}},
keywords = {{communication; Decision-making; emotional needs; end-of-life care; international; multi-perspective; qualitative; uncertainty}},
language = {{eng}},
publisher = {{Routledge}},
series = {{Mortality}},
title = {{End-of-life care decision-making from perspectives of patients, family members and healthcare professionals in 10 countries : a qualitative study within the iLIVE project}},
url = {{http://dx.doi.org/10.1080/13576275.2025.2449900}},
doi = {{10.1080/13576275.2025.2449900}},
year = {{2025}},
}