Information provision in life-threatening illnesses: comprehensive framework

BMJ Supportive & Palliative Care, vol. 16, pp. 628–634

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 18

1. Liesbeth Mirjam van Vliet Aachen Health and Medical Psychology

   Leiden University

   Affiliation as printed

   Health and Medical Psychology, Leiden University Faculty of Social and Behavioural Sciences, Leiden, The Netherlands

   Health and Medical Psychology, Leiden University Faculty of Social and Behavioural Sciences, Leiden, The Netherlands l.m.van.vliet@fsw.leidenuniv.nl

2. Jonathan Koffman

   University of Hull · Hull York Medical School

   Affiliation as printed

   Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, UK

3. Eve Namisango

   African Palliative Care Association

   Affiliation as printed

   African Palliative Care Association, Kampala, Uganda

4. Diah Martina

   University of Indonesia

   Affiliation as printed

   Division of Psychosomatic and Palliative Medicine, Department of Internal Medicine, Universitas Indonesia, Jakarta, Indonesia

   Universitas Indonesia Hospital, Universitas Indonesia, Depok, Indonesia

5. Daniela Gidaly
   Affiliation as printed

   Mammarosa, The Hague, The Netherlands

6. Martin Loučka

   Masaryk University

   Affiliation as printed

   Center for Palliative Care, Prague, Czech Republic

   Medical Psychology and Ethics, Faculty of Medicine, Masaryk University, Brno, Czech Republic

7. Anthony L. Back

   University of Washington

   Affiliation as printed

   Division of Hematology and Oncology, University of Washington, Seattle, Washington, USA

8. Lucy Ellen Selman

   University of Bristol

   Affiliation as printed

   Palliative and End of Life Care Research Group, Population Health Sciences, Bristol Medical School, University of Bristol, London, UK

9. Judith A C Rietjens

   Erasmus MC · Erasmus MC Cancer Institute · Delft University of Technology

   Affiliation as printed

   Department of Design, Organisation and Strategy, Faculty of Industrial Design Engineering, Delft University of Technology, Delft, The Netherlands

   Department of Medical Oncology, Erasmus MC Cancer Institute, University Medical Centre Rotterdam, Rotterdam, The Netherlands

10. Nicole Plum

    University Medical Center Utrecht

    Affiliation as printed

    UMC Cancer Center, UMC Utrecht, Utrecht, The Netherlands

11. Erica Borgstrom

    The Open University

    Affiliation as printed

    School of Health, Wellbeing and Social Care, Open University, Milton Keynes, UK

12. Natashe Lemos Dekker

    University of Amsterdam

    Affiliation as printed

    Anthropology of Health, Care and the Body, University of Amsterdam, Amsterdam, The Netherlands

13. Sabrina Bajwah

    King's College London

    Affiliation as printed

    Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King’s College London, London, UK

    Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, London, UK

14. Marike de Meij

    OLVG

    Affiliation as printed

    Department of Supportive and Palliative Care, OLVG, Amsterdam, The Netherlands

15. Masanori Mori

    Seirei Mikatabara General Hospital

    Affiliation as printed

    Palliative Care Team, Division of Palliative and Supportive Care, Seirei Mikatahara General Hospital, Hamamatsu, Shizuoka, Japan

16. Fiona Brosig Aachen Health and Medical Psychology

    Leiden University

    Affiliation as printed

    Health and Medical Psychology, Leiden University Faculty of Social and Behavioural Sciences, Leiden, The Netherlands

17. Justin J. Sanders

    McGill University

    Affiliation as printed

    Division of Palliative Care, Department of Family Medicine, McGill University, Montreal, Quebec, Canada

18. Annemarie Samuels Aachen Institute of Cultural Anthropology and Development Sociology

    Leiden University

    Affiliation as printed

    Institute of Cultural Anthropology and Development Sociology, Leiden University, Leiden, The Netherlands