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Participating in decision-making at the end of life: The self-reported ability of people with cancer across 11 countries

Engelberts, Yassin ; Rietjens, Judith A.C. ; Hartman, Laura A. ; Fischer, Claudia ; Joshi, Melanie ; Tripodoro, Vilma A. ; Barnestein-Fonseca, Pilar ; Birgisdóttir, Dröfn LU orcid ; Faksvåg Haugen, Dagny and Elyn, Antoine , et al. (2025) In Patient Education and Counseling 144. p.1-7
Abstract
Objectives
Uncertainty among healthcare providers about patients’ ability to make care decisions is a barrier to shared decision-making. We aimed to assess the self-reported decision-making ability of patients with cancer at the end of life.

Methods
Data from 11 countries of adults with a limited life expectancy and cancer as the primary diagnosis were used. Participants completed a questionnaire, including one item on decision-making ability and two on decision-making preferences. Correlations between self-reported ability and preferences were tested using Kendall’s tau. Associations between decision-making ability and patient characteristics were determined using mixed-effects ordinal regression... (More)
Objectives
Uncertainty among healthcare providers about patients’ ability to make care decisions is a barrier to shared decision-making. We aimed to assess the self-reported decision-making ability of patients with cancer at the end of life.

Methods
Data from 11 countries of adults with a limited life expectancy and cancer as the primary diagnosis were used. Participants completed a questionnaire, including one item on decision-making ability and two on decision-making preferences. Correlations between self-reported ability and preferences were tested using Kendall’s tau. Associations between decision-making ability and patient characteristics were determined using mixed-effects ordinal regression models.

Results
The sample (n = 1076, 53 % identified as men) had a mean age of 69 years (SD: 11.5). Among them, 80 % reported being able to make decisions about their life and care most of the time, 14 % some of the time, 5 % only a little of the time, and 2 % never. Regarding preferences, 95 % preferred to be involved in decision-making and 44 % preferred the doctors to make the decisions. These preferences were weakly correlated with decision-making ability (Kendall’s tau: 0.13 and −0.11, respectively). Feeling able to make decisions was less likely for those institutionalized (versus living with relatives, OR: 0.26, 95 % CI: 0.12;0.55), those with tertiary education (versus primary/no education, OR: 0.43, 95 % CI: 0.22;0.85) and those without clear understanding of their health (versus those with understanding, OR: 0.29, 95 % CI: 0.16;0.52).

Conclusions
Although most patients felt able to make decisions about their care, two out of every ten did not. About five out of ten preferred their doctors to make decisions.

Practice implications
As almost all patients want to be involved in decisions, we suggest that providers discuss with patients how decisions will be made. This may enable providers to identify patients’ needs and adapt the decision-making process to their abilities and preferences. (Less)
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organization
publishing date
type
Contribution to journal
publication status
epub
subject
in
Patient Education and Counseling
volume
144
pages
1 - 7
publisher
Elsevier
ISSN
0738-3991
DOI
10.1016/j.pec.2025.109446
language
English
LU publication?
yes
id
2782f984-6e30-4222-856d-9d7cd179f546
date added to LUP
2025-12-18 11:41:06
date last changed
2025-12-18 14:03:12
@article{2782f984-6e30-4222-856d-9d7cd179f546,
  abstract     = {{Objectives<br/>Uncertainty among healthcare providers about patients’ ability to make care decisions is a barrier to shared decision-making. We aimed to assess the self-reported decision-making ability of patients with cancer at the end of life.<br/><br/>Methods<br/>Data from 11 countries of adults with a limited life expectancy and cancer as the primary diagnosis were used. Participants completed a questionnaire, including one item on decision-making ability and two on decision-making preferences. Correlations between self-reported ability and preferences were tested using Kendall’s tau. Associations between decision-making ability and patient characteristics were determined using mixed-effects ordinal regression models.<br/><br/>Results<br/>The sample (n = 1076, 53 % identified as men) had a mean age of 69 years (SD: 11.5). Among them, 80 % reported being able to make decisions about their life and care most of the time, 14 % some of the time, 5 % only a little of the time, and 2 % never. Regarding preferences, 95 % preferred to be involved in decision-making and 44 % preferred the doctors to make the decisions. These preferences were weakly correlated with decision-making ability (Kendall’s tau: 0.13 and −0.11, respectively). Feeling able to make decisions was less likely for those institutionalized (versus living with relatives, OR: 0.26, 95 % CI: 0.12;0.55), those with tertiary education (versus primary/no education, OR: 0.43, 95 % CI: 0.22;0.85) and those without clear understanding of their health (versus those with understanding, OR: 0.29, 95 % CI: 0.16;0.52).<br/><br/>Conclusions<br/>Although most patients felt able to make decisions about their care, two out of every ten did not. About five out of ten preferred their doctors to make decisions.<br/><br/>Practice implications<br/>As almost all patients want to be involved in decisions, we suggest that providers discuss with patients how decisions will be made. This may enable providers to identify patients’ needs and adapt the decision-making process to their abilities and preferences.}},
  author       = {{Engelberts, Yassin and Rietjens, Judith A.C. and Hartman, Laura A. and Fischer, Claudia and Joshi, Melanie and Tripodoro, Vilma A. and Barnestein-Fonseca, Pilar and Birgisdóttir, Dröfn and Faksvåg Haugen, Dagny and Elyn, Antoine and Mason, Stephen and van der Heide, Agnes and Korfage, Ida J.}},
  issn         = {{0738-3991}},
  language     = {{eng}},
  month        = {{12}},
  pages        = {{1--7}},
  publisher    = {{Elsevier}},
  series       = {{Patient Education and Counseling}},
  title        = {{Participating in decision-making at the end of life: The self-reported ability of people with cancer across 11 countries}},
  url          = {{http://dx.doi.org/10.1016/j.pec.2025.109446}},
  doi          = {{10.1016/j.pec.2025.109446}},
  volume       = {{144}},
  year         = {{2025}},
}