{
  "abstract": "Background 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.Methods 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.Results 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.Conclusion 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.Unique Contribution We performed a large-scale international study among patients in the last phase of life.Implications 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": [
    {
      "affiliations": [
        "Erasmus Mc, Rotterdam, Netherlands (the)"
      ],
      "name": "Agnes van der Heide"
    },
    {
      "affiliations": [
        "Erasmus Mc, Rotterdam, Netherlands (the)"
      ],
      "name": "Yassin Engelberts"
    },
    {
      "affiliations": [
        "Erasmus Mc, Rotterdam, Netherlands (the)"
      ],
      "name": "Judith Rietjens"
    },
    {
      "affiliations": [
        "Erasmus Mc, Rotterdam, Netherlands (the)"
      ],
      "name": "Laura Hartman"
    },
    {
      "affiliations": [
        "Erasmus Mc, Rotterdam, Netherlands (the)"
      ],
      "name": "Claudia Fischer"
    },
    {
      "affiliations": [
        "Erasmus Mc, Rotterdam, Netherlands (the)"
      ],
      "name": "Melanie Joshi"
    },
    {
      "affiliations": [
        "Erasmus Mc, Rotterdam, Netherlands (the)"
      ],
      "name": "Vilma Tripodoro"
    },
    {
      "affiliations": [
        "Erasmus Mc, Rotterdam, Netherlands (the)"
      ],
      "name": "Pilar Barnestein-Fonseca"
    },
    {
      "affiliations": [
        "Erasmus Mc, Rotterdam, Netherlands (the)"
      ],
      "name": "Ida Korfage"
    }
  ],
  "title": "82 Participating in decision-making at the end-of-life: preferences of people with cancer across 11 countries",
  "uid": "55c52f0e-9005-5ea3-ad85-cc4783bc0ac2"
}