{
  "abstract": "Background In life-threatening illnesses, open information provision can benefit patients and families. However, not all patients prefer to have all information. There is a lack of clinical guidance on how to handle patient preferences for non-disclosure.Aim To develop a conceptual framework and practical guidance for clinicians regarding the spectrum of patients’ information provision preferences with a focus on when patients do not desire to have full information.Methods Multidisciplinary expert stakeholder meeting.Results 20 expert stakeholders from various disciplines and continents participated in the expert meeting. Based on the qualitative results, a conceptual framework was created. Our framework highlights that information is never value-free but attains value via healthcare provider and patient/family factors, including how information is interpreted by clinicians and patients/families. In this process, ethical and sociocultural tensions can arise, such as between patient and family autonomy, that can influence harmful effects of the attained value of information along several axes such as empowerment versus disempowerment. To mitigate tensions and minimise harm, our framework produces practical guidance for clinicians such as making a connection and having an open attitude.Conclusions Our framework has clinical, research and policy implications and can be further refined and tested. Ultimately, it serves as a starting point to reduce social and cultural inequities in end-of-life care information in a global context.",
  "authors": [
    {
      "affiliations": [
        "Health and Medical Psychology, Leiden University Faculty of Social and Behavioural Sciences, Leiden, The Netherlands"
      ],
      "name": "Liesbeth M van Vliet"
    },
    {
      "affiliations": [
        "Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, UK"
      ],
      "name": "Jonathan Koffman"
    },
    {
      "affiliations": [
        "African Palliative Care Association, Kampala, Uganda"
      ],
      "name": "Eve Namisango"
    },
    {
      "affiliations": [
        "Division of Psychosomatic and Palliative Medicine, Department of Internal Medicine, Universitas Indonesia, Jakarta, Indonesia",
        "Universitas Indonesia Hospital, Universitas Indonesia, Depok, Indonesia"
      ],
      "name": "Diah Martina"
    },
    {
      "affiliations": [
        "Mammarosa, The Hague, The Netherlands"
      ],
      "name": "Daniela Gidaly"
    },
    {
      "affiliations": [
        "Center for Palliative Care, Prague, Czech Republic",
        "Medical Psychology and Ethics, Faculty of Medicine, Masaryk University, Brno, Czech Republic"
      ],
      "name": "Martin Loucka"
    },
    {
      "affiliations": [
        "Division of Hematology and Oncology, University of Washington, Seattle, Washington, USA"
      ],
      "name": "Anthony L Back"
    },
    {
      "affiliations": [
        "Palliative and End of Life Care Research Group, Population Health Sciences, Bristol Medical School, University of Bristol, London, UK"
      ],
      "name": "Lucy E Selman"
    },
    {
      "affiliations": [
        "Department of Medical Oncology, Erasmus MC Cancer Institute, University Medical Centre Rotterdam, Rotterdam, The Netherlands",
        "Department of Design, Organisation and Strategy, Faculty of Industrial Design Engineering, Delft University of Technology, Delft, The Netherlands"
      ],
      "name": "Judith AC Rietjens"
    },
    {
      "affiliations": [
        "UMC Cancer Center, UMC Utrecht, Utrecht, The Netherlands"
      ],
      "name": "Nicole Plum"
    },
    {
      "affiliations": [
        "School of Health, Wellbeing and Social Care, Open University, Milton Keynes, UK"
      ],
      "name": "Erica Borgstrom"
    },
    {
      "affiliations": [
        "Anthropology of Health, Care and the Body, University of Amsterdam, Amsterdam, The Netherlands"
      ],
      "name": "Natashe Lemos Dekker"
    },
    {
      "affiliations": [
        "Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King’s College London, London, UK"
      ],
      "name": "Sabrina Bajwah"
    },
    {
      "affiliations": [
        "Science Technology Society, Massachusetts Institute of Technology, Cambridge, Massachusetts, USA"
      ],
      "name": "Dwai Banerjee"
    },
    {
      "affiliations": [
        "Department of Supportive and Palliative Care, OLVG, Amsterdam, The Netherlands"
      ],
      "name": "M A de Meij"
    },
    {
      "affiliations": [
        "Palliative Care Team, Division of Palliative and Supportive Care, Seirei Mikatahara General Hospital, Hamamatsu, Shizuoka, Japan"
      ],
      "name": "Masanori Mori"
    },
    {
      "affiliations": [
        "Health and Medical Psychology, Leiden University Faculty of Social and Behavioural Sciences, Leiden, The Netherlands"
      ],
      "name": "Fiona Brosig"
    },
    {
      "affiliations": [
        "Division of Palliative Care, Department of Family Medicine, McGill University, Montreal, Quebec, Canada"
      ],
      "name": "Justin J Sanders"
    },
    {
      "affiliations": [
        "Institute of Cultural Anthropology and Development Sociology, Leiden University, Leiden, The Netherlands"
      ],
      "name": "Annemarie Samuels"
    }
  ],
  "title": "Information provision in life-threatening illnesses: comprehensive framework",
  "uid": "6ed2066f-1f38-525d-bf5e-38333cee19d3"
}