Palliative Care: When Patients Opt for Less Information

In many countries, including the Netherlands, it is the norm to give patients all the available information about their diagnosis and their prognosis. It is even set out in law that a doctor must share this information. However, depending on personal and cultural convictions, it appears in practice that not all patients want to have all such information. 'Information isn't neutral,' Liesbeth van Vliet stresses. 'How you say something, who says it and the context in which that conversation takes place all have an effect on the impact.'

An interdisciplinary meeting of experts

With funding from the Early Career Partnership of the Royal Netherlands Academy of Arts and Sciences (KNAW), Van Vliet and Samuels organised an international expert meeting. Twenty researchers from different disciplines spent two days considering the question of how to deal with seriously ill patients who do not want to know everything about their situation?

The researchers devised this project to develop a conceptual and practical framework and practical guidelines for clinicians. Paying attention to cultural diversity is an important aspect of the proposed framework, and clinicians need to bear in mind how the need for information differs among cultures. In some cultures, for example, it is normal for the doctor to talk with family members and not with the actual patient. The researchers warn, however, that cultural background is not the only consideration: not everyone with the same background has the same preferences regarding information. 'We have to recognise the cultural and social background, but have to take care not to generalise. Otherwise we're likely to make assumptions that may well be wrong,' Samuels explains.

The importance of a good relationship of trust

A recurring insight from the research is the importance of a good relationship of trust between the care provider and the patient. This means: taking enough time, not being too quick to 'throw information over the fence', and discussing in advance what a person does or does not want. Van Vliet: 'Sometimes people only want information at a later stage, once you have built up confidence. Another option is to provide information in small doses.' One simple recommendation is to ask patients specifically how much information they want and how they want to receive it. That's logical advice, but something that is often forgotten in practice.

From scientific research to low-threshold infographic

To make the insights from the research accessible for practice, the researchers developed an infographic with concrete tips for care providers. 'It's available in no fewer than six languages,' Van Vliet says with some pride, 'and the translation takes cultural differences into account.' The infographic was designed as a low-threshold reminder, for example to display in a work area or to disseminate via social media. 'Care providers appreciate these infographics enormously. They are visual, practical and can be applied directly, without needing to read a whole research article.'

'How is this useful for people?'

Rounding off this project does not mean the end of the collaboration between Liesbeth van Vliet and Annemarie Samuels. A new research project has been started, financed by KWF Cancer Research, where the researchers will develop guidelines and training for doctors on providing information in palliative care. A local initiative has also been launched in collaboration with the BuZZ welfare organisation to make palliative care more available for vulnerable groups in Leiden.

Coupling academic insights to direct societal applications is a further important goal for Liesbeth van Vliet and Annemarie Samuels. By combining psychology, anthropology and expertise from other disciplines, they create products like infographics and training courses that can be implemented in practice. Samuels: 'At the start of every project we ask ourselves: How is this useful for people?'