ABSTRACT
Decision-making about medical treatment can be difficult and emotionally challenging. It can be particularly difficult to make decisions about life-sustaining treatment when vulnerable patients’ lives and well-being are at stake. Children with very severe life-threatening and life-limiting illnesses are especially vulnerable patients and most families struggle when they need to cope with a child’s severe illness. The challenges then increase if the family is in a foreign environment and must navigate through a foreign health care system in a foreign language. Patients and their families might not be familiar with the procedures and measures that are suggested by the medical staff. Communication is a prerequisite for coming to a shared understanding of an illness and giving patients and/or their parents or other family members the opportunity to participate successfully in shared treatment decisions about the right treatment approach. Communication can obviously be extremely difficult if the parties are unable to speak the same language. If language interpreters are not readily available, either due to structural deficits or in emergency situations, misunderstandings can easily occur. Even if communication can be successfully established, cultural differences might be present, which require culturally competent handling. Furthermore, shared decision-making and advance care planning can raise meta-ethical questions about whether all the participants – regardless of their cultural identity or background – should be guided by the same principles and norms and about who has the last say in the decision-making process when value conflicts are at the heart of an interpersonal conflict.
