Research project

When Patients Prefer Non-Disclosure: A Guideline and Training Module for Culturally Sensitive Information Provision in Palliative Care

In the Netherlands, as elsewhere in the world, many patients who are in a palliative care trajectory prefer not to receive full or explicit medical information. This is more often the case for patients with ethnic or cultural minority backgrounds. As open-information provision is the norm, non-disclosure preferences can create communication challenges in clinical encounters. If not sufficiently addressed, these challenges lead to inequities in care.

Duration: 2025 - 2029
Contact: Annemarie Samuels
Funding: KWF Kankerbestrijding
Partners: Amsterdam UMC, Pharos

About the Project

This project examines challenges and best practices of physician responses to patient preferences for (partial) non-disclosure of information about diagnosis, prognosis and treatment trajectories. Next to academic insights, it develops an evidence-based guideline and a blended learning module to support clinicians in communicating with patients who prefer non-disclosure. The aim is to contribute to more culturally sensitive, inclusive, and person-centred palliative care.

The project is supported by an advisory board consisting of Prof. Jonathan Koffman, Prof. Yvette van der Linden, Dr. Diah Martina, and Dr. Christiaan Rhodius, who bring expertise in palliative care, communication, cultural diversity, and end-of-life decision-making.

The project consists of three parts:

1. Qualitative Research on Non-Disclosure Preferences
In this phase, we conduct a scoping review and qualitative study. Through interviews and focus groups with clinicians, patients, and family caregivers, we identify key dilemmas, best practices, and real-life communication challenges around non-disclosure preferences.

2. Blended Learning
Based on the findings from the first part, in part two of the project, we develop a blended learning module that combines e-learning with in-person training. Using modelling videos, interactive exercises, and supervised roleplay, the module aims to strengthen clinicians’ culturally sensitive communication skills when patients prefer non-disclosure.

3. Evaluation of the Training
In the final part of the project, we assess the effectiveness of the blended learning module through a before-after study with standardized patient assessments and surveys.