Bridging culture gaps through conversations about palliative care

When we started working with older adults of Chinese background in the Netherlands, we found that palliative care is often a distant and unfamiliar concept. Many face language barriers, lack trust in the healthcare system, or simply don’t know what palliative care is. Cultural taboos around illness and death add to the complexity of discussing these topics, also with family.

In an earlier study with 43 older adults of Chinese background, many were unsure how to plan for their future care and had misunderstandings about palliative care. For example, some believed that euthanasia is easily accessible and could be a solution for many of the challenges they might face. Healthcare providers in palliative care, on the other hand, observed that they not often encounter patients with Chinese background, and that they wonder how to best take care of these patients. That’s where the idea for our new project ‘Appropriate palliative care for people with a Chinese background’ began.

The game we are using is called ‘5 Flavors in a Grocery Store’, originally developed by a research team in Hong Kong (see the articles under ‘more information’). The 5 flavors are sweet, sour, bitter, salty, and spicy; they represent life’s different emotions and experiences. Each flavor is linked to a different type of question: fun mini-games (sweet), past experiences (sour), views toward death and dying (salty); end-of-life care preferences (bitter) and knowledge about end-of-life care (spicy).

The game goes as follows: 3 or 4 players take turns rolling dice, moving around the board, and answering question cards. The rules are simple, and the setting is informal, which makes it easier to open up. The game provides a safe and familiar space to talk about difficult subjects like palliative care. All the game components are written in traditional Chinese.

This game has been used with older adults in Hong Kong and mainland China, where players found it an acceptable way to start discussions about end-of-life matters. We earlier conducted 12 game sessions in Mandarin and Cantonese in the Netherlands. The board game is currently only available in a Chinese version, but we believe it has strong potential to be adapted into other languages and used with players from different cultural backgrounds. When considering cross-cultural use, it’s important to adapt not only the language, but also the content and visual elements to better suit the characters and needs of players.

As an intercultural team (lead by Ida Korfage (Dutch background, and Tingting Zhu (Chinese background), we are working closely with organizations like the Rotterdam Chinese Church and the Tien Yan Foundation, which supports older Chinese adults in Amsterdam and The Hague. We have already built connections with our project members during our previous project. Chinese community leaders, such as church priests and community managers, are helping us to connect with participants and share information. We are also continuing to broaden our network within the Chinese community by involving participants from more cities in the Netherlands. On the healthcare side, we are partnering with professionals from institutions like Erasmus MC, including palliative care specialists and spiritual caregivers and care homes like Laurens. 

Our ultimate goal is to create culturally appropriate palliative care for people older adults with a Chinese background in the Netherlands. For the Chinese community, we want to provide information that answers their questions, reduces fear, and empowers them to speak with doctors about their needs and wishes. For Dutch healthcare providers, we want to offer insights into how to better understand and support their Chinese patients. By creating a shared space, both literal and metaphorical, for conversation, we hope to start building a bridge between cultures.