82 Participating in decision-making at the end-of-life: preferences of people with cancer across 11 countries

<h3>Background</h3> Uncertainty among healthcare providers about the preferences and ability of patients with cancer to participate in care decisions at the end of life is a barrier to advance care planning. We aim to assess decision-making preferences and self-reported ability of patients in 11 countries. <h3>Methods</h3> Data were used from an international cohort of adult patients with a limited life expectancy and cancer as main diagnosis (the iLIVE study). Participants completed a questionnaire, including two items on decision-making preferences (AEOLI) and one on decision-making ability (ICECAP-SCM). Associations between these items and patient characteristics were determined using mixed-effects ordinal regression models and Average Marginal Effects. <h3>Results</h3> The study population (n=1076) included 53% men and 47% women, with a mean age of 69 years (SD: 11.5). 95% wanted to be involved in decisions about their care. 80% reported being ‘able to make decisions about their life and care most of the time’. 44% preferred doctors to make all decisions about their care. The patient preference for doctors to make the decisions about their care was weakly correlated with their ability to make decisions. Participants living in an institution (compared to living with relatives), those with tertiary education (compared to primary or no education) and those who reported not to understand their health condition (compared to those who did) were less likely to consider themselves able to make these decisions most of the time. We found older participants and men (compared to women) to be slightly more likely to prefer doctors to make the decisions. Those with primary or no education (compared to university) and those living in an institution (compared to living with relatives) were more likely to prefer doctors to make the decisions. <h3>Conclusion</h3> Although nearly all individuals with cancer in the end-of-life phase desired involvement in the decision-making process and most reported to be able to make decisions about care, about half still preferred their doctors to make the decisions. <h3>Unique Contribution</h3> We performed a large-scale international study among patients in the last phase of life. <h3>Implications</h3> Our findings that nearly all patients desired involvement in decision-making and often considered themselves able to decide, while half preferred their doctors to make decisions, highlights the opportunity and necessity for healthcare providers to engage patients at the end of life in conversations about care and treatment.

Authors

Institutions

Publication Details

Published
2025-09-01
DOI
https://doi.org/10.1136/spcare-2025-acp.35
Primary Topic
Palliative Care and End-of-Life Issues
Type
article
Field-Weighted Citation Impact
0.00
Controls
|||
ALL TIME
JAN
FEB
MAR
APR
MAY
JUN
JUL
AUG
SEP
OCT
article

82 Participating in decision-making at the end-of-life: preferences of people with cancer across 11 countries

Judith Rietjens, Laura Hartman, Melanie Joshi, Claudia Fischer et al.
Palliative Care and End-of-Life Issues
article

82 Participating in decision-making at the end-of-life: preferences of people with cancer across 11 countries

Judith Rietjens, Laura Hartman, Melanie Joshi, Claudia Fischer, Vilma Tripodoro, Pilar Barnestein‐Fonseca, Ida J. Korfage, Aǵnes van der Heide, Yassin Engelberts
article en

Abstract

<h3>Background</h3> Uncertainty among healthcare providers about the preferences and ability of patients with cancer to participate in care decisions at the end of life is a barrier to advance care planning. We aim to assess decision-making preferences and self-reported ability of patients in 11 countries. <h3>Methods</h3> Data were used from an international cohort of adult patients with a limited life expectancy and cancer as main diagnosis (the iLIVE study). Participants completed a questionnaire, including two items on decision-making preferences (AEOLI) and one on decision-making ability (ICECAP-SCM). Associations between these items and patient characteristics were determined using mixed-effects ordinal regression models and Average Marginal Effects. <h3>Results</h3> The study population (n=1076) included 53% men and 47% women, with a mean age of 69 years (SD: 11.5). 95% wanted to be involved in decisions about their care. 80% reported being ‘able to make decisions about their life and care most of the time’. 44% preferred doctors to make all decisions about their care. The patient preference for doctors to make the decisions about their care was weakly correlated with their ability to make decisions. Participants living in an institution (compared to living with relatives), those with tertiary education (compared to primary or no education) and those who reported not to understand their health condition (compared to those who did) were less likely to consider themselves able to make these decisions most of the time. We found older participants and men (compared to women) to be slightly more likely to prefer doctors to make the decisions. Those with primary or no education (compared to university) and those living in an institution (compared to living with relatives) were more likely to prefer doctors to make the decisions. <h3>Conclusion</h3> Although nearly all individuals with cancer in the end-of-life phase desired involvement in the decision-making process and most reported to be able to make decisions about care, about half still preferred their doctors to make the decisions. <h3>Unique Contribution</h3> We performed a large-scale international study among patients in the last phase of life. <h3>Implications</h3> Our findings that nearly all patients desired involvement in decision-making and often considered themselves able to decide, while half preferred their doctors to make decisions, highlights the opportunity and necessity for healthcare providers to engage patients at the end of life in conversations about care and treatment.

Erasmus University Rotterdam (NL)
Openalex Percentile: Top 67%
Palliative Care and End-of-Life Issues
AI Navigator

Ask Laika to Summarize, Analyze, and Connect papers live on the map.

Summarize Papers & Methodologies

Extract key findings, datasets, and comparative methods across publications.

Benchmark Rankings & Visual Analytics

Rank top research institutions, authors, funders, topics, and journals by Field-Weighted Citation Impact (FWCI) and paper volume with instant charts.

Connect Distant Disciplines

Bridge topological clusters on the map to find hidden collaborative intersections.