Navigating Patient Preferences in Palliative Care: When Patients Choose Not to Know Everything

In palliative care settings, healthcare professionals often face the delicate challenge of managing how much information to share with patients about their diagnosis and prognosis. While the norm in many countries, including the Netherlands, underscores transparent communication and legal obligations to disclose detailed health information, patient preferences can vary significantly due to cultural, personal, or social reasons.

Psychologist Liesbeth van Vliet and anthropologist Annemarie Samuels have brought together their expertise to explore this complex issue. Their interdisciplinary approach involves understanding that information delivery is not purely neutral; the manner, context, and who communicates the information profoundly influence its impact.

To address this, van Vliet and Samuels organized an international expert meeting with twenty researchers from diverse fields. They aimed to develop a framework and practical guidelines for clinicians, emphasizing the importance of cultural competence. Different cultures have varying norms—for instance, some may encourage sharing information with family members rather than directly with the patient. However, cultural background is not the sole determinant; individual preferences within similar backgrounds can differ widely.

A pivotal insight across the research findings is the necessity of establishing a trusting relationship between care providers and patients. Building confidence takes time, and it’s advisable to discuss expectations upfront, including how much information the patient wants and how they prefer to receive it. Small doses of information and clear communication about preferences can lead to better patient satisfaction and care outcomes.

To translate research insights into practice, the team created an accessible infographic, available in multiple languages, offering concrete tips for healthcare providers. This visual aid serves as a reminder and practical tool, easily implemented in care settings or shared via social media.

The project's ongoing efforts include developing guidelines and training programs for clinicians, supported by the KWF Cancer Research. Additionally, initiatives like collaborations with local organizations aim to make palliative care more accessible for vulnerable groups. The overarching goal is to bridge scientific research with societal application—combining psychology, anthropology, and other disciplines to produce practical resources that enhance patient-centered care.

In essence, respecting patient autonomy while fostering trust through tailored communication strategies is fundamental in palliative care. Recognizing that preferences vary and can evolve underscores the importance of personalized, empathetic interactions that prioritize the patient's well-being and dignity.

Source: Medical Xpress