Participating in decision-making at the end of life
The self-reported ability of people with cancer across 11 countries
Yassin Engelberts (Erasmus MC)
Judith A.C. Rietjens (TU Delft - Industrial Design Engineering, Erasmus MC)
Laura A. Hartman (Erasmus MC)
Claudia Fischer (Medical University of Vienna)
Melanie Joshi (Universität zu Köln)
Vilma A. Tripodoro (Universidad de Navarra, Instituto Pallium Latinoamérica)
Pilar Barnestein-Fonseca (CUDECA Hospice Foundation, IBIMA Institute)
Dröfn Birgisdóttir (Lund University)
Dagny Faksvåg Haugen (Haukeland University Hospital, University of Bergen)
Antoine Elyn (Landspitali University Hospital)
Stephen Mason (University of Liverpool)
Agnes van der Heide (Erasmus MC)
Ida J. Korfage (Erasmus MC)
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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 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.
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