Information provision in life-threatening illnesses comprehensive framework

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.