Preferences in pediatric advance care planning across cultures: a scoping review
This scoping review of 27 empirical studies demonstrates that cultural and religious backgrounds significantly influence pediatric advance care planning preferences regarding communication partners, information delivery, family readiness, and decision-making, highlighting the need for culturally sensitive approaches while cautioning against overgeneralizing these findings to all families within a specific background.
Original paper licensed under CC BY 4.0 (https://creativecommons.org/licenses/by/4.0/). This is an AI-generated explanation of the paper below. It is not written or endorsed by the authors. For technical accuracy, refer to the original paper. Read full disclaimer
When a child faces a life-threatening illness, the path forward is rarely a straight line. It is a landscape of difficult choices, where families and doctors must navigate the future together. In the medical world, this process of looking ahead is called advance care planning. It is not about giving up; it is a structured way for families and healthcare providers to talk about what matters most, what goals they hold, and what kind of care they want if things get worse. While this practice has long been common for adults, it is a newer and more complex territory for children. The challenge is that these conversations do not happen in a vacuum. They happen within families, and families are shaped by culture. Culture is not just a list of traditions or a single language; it is a living, changing lens through which people see the world, interpret illness, and understand death. What one family sees as a necessary truth, another might view as a harmful blow. What one culture sees as a duty to the individual, another might see as a responsibility to the whole family. Understanding how these deep-seated beliefs shape the conversation about a child's future care is essential, because without that understanding, the best medical intentions can still miss the mark.
A team of researchers set out to map this complex terrain. They conducted a wide-ranging review of existing studies to see how cultural and religious backgrounds influence how families and doctors approach these difficult talks with children. They did not look for a single rule that applies to everyone. Instead, they gathered evidence from twenty-seven different studies around the world, including interviews with families and doctors, case studies of specific families, and surveys. These studies came from places as varied as the United States, Japan, the Netherlands, Tanzania, and Jordan. The researchers looked for patterns in how people from different backgrounds wanted to handle the conversation: who should be in the room, what words should be used, how to talk about death, and what kind of medical treatment to choose when the end is near.
One of the clearest patterns they found was about who gets to speak. In many Western medical settings, the focus is often on the individual patient or the immediate parents. However, the review showed that in many cultures, the circle of decision-makers is much wider. In some families, grandparents hold a special advisory role, and in others, community elders or religious leaders are expected to be part of the discussion. For some families, the idea of a single person making a choice is foreign; the decision belongs to the family unit. This extends to the children themselves. In some cultures, there is a strong belief that a child should be protected from the full truth of a terminal diagnosis. Parents in countries like Japan, India, and Jordan, for instance, have expressed a desire to shield their children from the knowledge that they are dying, fearing that knowing the truth might destroy their hope or even hasten their death. This creates a difficult tension for doctors, who may feel a legal or ethical duty to be honest with the child, while the family feels a moral duty to protect them.
The way information is delivered matters just as much as who is listening. The researchers found that language barriers are a significant hurdle, but the issue goes deeper than just translation. Even when an interpreter is present, the specific words used can change the entire meaning of the conversation. Some families prefer direct, clear language, while others find it too harsh. In some communities, the word "cancer" carries a heavy stigma, so families prefer to use general terms to describe the illness. In other cases, families and doctors found comfort in using metaphors or religious language that resonated with their beliefs. For example, some Christian families appreciated when doctors used biblical language to discuss hope, while some parents used spiritual metaphors to tell their children the truth in a gentle way. Conversely, some healthcare providers admitted they felt uncomfortable or unprepared to discuss death in ways that respected the spiritual beliefs of families from different backgrounds, such as Aboriginal communities in Australia, where concepts of the afterlife and the spirit world are central.
Perhaps the most sensitive area is the willingness to talk about death itself. The review highlighted that for many families, the ability to discuss the end of life is deeply tied to their hope. In some religious families, the belief that a miracle could happen makes it very hard to acknowledge that death is approaching. This is not necessarily a denial of reality, but a way of holding onto hope for as long as possible. In some cases, this hope leads families to request aggressive, life-prolonging treatments even when the chances of recovery are slim. The researchers noted that sometimes this preference is driven by a misunderstanding of the medical prognosis, but in other cases, it is a genuine expression of religious faith. Interestingly, the study also found that doctors sometimes assume that families from non-Western backgrounds will always want these aggressive treatments, a stereotype that can lead to care that does not actually reflect what the family wants.
The researchers were careful to point out that these findings are not a rigid map. A family's culture does not dictate their choices in a mechanical way; every family is unique, and even within the same cultural group, people can have very different views. The study did not prove that one way of handling these conversations is better than another. Instead, it showed that the current way these conversations are often conducted in hospitals may not fit the needs of everyone. The authors suggest that the solution lies in curiosity rather than assumption. Doctors and families need to talk openly about what matters to them, asking questions to understand the reasons behind a family's wishes rather than guessing based on their background. By using skilled interpreters, respecting different ways of speaking about illness, and acknowledging that hope and truth can look different to different people, healthcare providers can build a bridge of trust. This approach ensures that the care a child receives aligns with the values of the family, making the journey through illness a little less lonely and a little more understood.
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