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.
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.
| Original language | English |
|---|---|
| Article number | 005207 |
| Number of pages | 7 |
| Journal | BMJ Supportive and Palliative Care |
| DOIs | |
| Publication status | Published - 2025 |
| Event | 19th World Congress of the European Association for Palliative Care - Helsinki, Finland Duration: 29 May 2025 → 31 May 2025 https://eapccongress.eu/2025/ |
Bibliographical note
Green Open Access added to TU Delft Institutional Repository 'You share, we take care!' - Taverne project https://www.openaccess.nl/en/you-share-we-take-careOtherwise as indicated in the copyright section: the publisher is the copyright holder of this work and the author uses the Dutch legislation to make this work public.
Keywords
- Communication
- Palliative Care