Cultural diversity in organ donation: ‘Every person is different’

"When talking to loved ones, don't make assumptions based on ideas about 'Islam' or 'Hinduism.' That is a real pitfall," says cultural anthropologist Cor Hoffer. "Ask how people view it themselves, because that is what matters." It is Cor's most important lesson for the healthcare providers he trains in dealing with cultural diversity. The basic rule is actually simple: enter into conversation without prejudice. Because one Dutch person with a Turkish background, Jehovah's Witness, or Eastern European migrant worker is not the same as another.

Differences in donor registration

This principle always applies, including in donation conversations. Naturally, it is useful to know that the number of active registrations in the Donor Register differs between population groups. In 2024, 40 percent of people of Dutch origin had registered with an active 'yes'. That percentage is much lower among people with a Turkish or Moroccan background: 4 and 1 percent, respectively. People of Indonesian, Caribbean, or Surinamese origin fall in between, at 32, 16, and 11 percent.

Movements, generations, and individuals

Such figures say something about the average. But every culture has diversity in movements and individuals, Cor emphasizes. Take one of the largest Dutch population groups with a migration history: people of Surinamese origin. Among them are Afro-Surinamese, Hindustani, Chinese, Javanese, Indigenous Surinamese, and so on. Furthermore, within all groups with a migration history, there is a distinction between generations. First-generation migrants often derive more of their views from the culture of their country of origin than their children and grandchildren do.

A lot of hesitation

To connect with the individual, an open conversation is therefore the only way forward. But in practice, healthcare providers have "a lot of hesitation about asking questions," notes donation coordinator Samira Maleki. Born in Iran, she works at the OLVG in Amsterdam, a hospital with a highly diverse patient population. When she provides 'Communication regarding donation' training to healthcare professionals, she hears that they do not always consult the Donor Register. "They say: when I see this family and their religion, I already know I’m going to get a 'no.' My answer is then: remember, if it were me in that bed and you made that assumption, you would have missed me as a donor." Her appeal is therefore: always check the donor register.

‘Park your effort’

Machlon Huiting, a former organ donation coordinator at the UMCG, recognizes the hesitation one can feel as a healthcare provider. He once conducted a donation conversation with the relatives of a Jehovah’s Witness. The man was registered as a ‘yes’ in the donor register. His wife and son were also in favor of organ donation, but strongly opposed to tissue donation. Machlon found it difficult to ask for consent for scientific research. “I noticed a barrier in myself because they were Jehovah’s Witnesses and had already stated they did not want tissue donation. Did I really have to ask this as well? Ultimately, I thought: it is also unpleasant if people only hear about this afterwards. So, I set aside my discomfort and provided the information anyway. It turned out that this was actually something they very much wanted.”

Invite to share

Having an open-minded conversation turns out not to be as easy as it seems. "Healthcare providers often tense up," Cor knows. "They think: I’d better not ask any questions, because I don't know anything about these people's culture. But you don't need to know that at all. People will be happy to tell you themselves." How can you invite them to do so? "Say, for example: 'You are Hindu, could you explain to me what that means? I am a layman in this area.'" According to Cor, it canCultural Interviewthis can be a useful tool. It is a methodology designed to facilitate the conversation between healthcare providers and patients or their relatives from different cultural backgrounds. Machlon advises 'leveling' in every donation conversation—regardless of someone's cultural background—first. In other words: to tune in to the relatives. "Pay attention to their grief and to their story. By doing so, you will naturally understand the context much better."

Know your own philosophy of life.

To be able to respect others, it is also important to reflect on your own philosophy of life. What do you value in life, what are your norms and values? "It is good to be aware of that, otherwise you unintentionally bring your own views into the conversation," says Cor. "You must be able to make a distinction between your views as a healthcare professional and as a person. Suppose your interpretation of Islam is that donation is permitted, and an orthodox family believes it is not. Then you should not enter into a theological debate. That is not your place."

Always surprises

If you embrace these principles, you will get a long way. Intensivist Mathilde Slabbekoorn from Haaglanden Medical Center summarizes the core as follows: “Every person is different and also thinks differently about donation.” She emphasizes that working with different cultures is “just very fascinating.” “If you can talk to people about their culture, it only makes your work more enjoyable. Surprising things always happen in donation conversations. No matter how sad those conversations are.”