Child participation in decision-making and end-of-life care


What are the facilitators and barriers for the child or adolescent at the end of life to participate in therapeutic decision-making (even against the advice of parents or carers)?


    1. All healthcare professionals caring for a patient who is a candidate for PPC must recognize that he or she has a central role in the decision-making process.
    2. Professionals should explain to children or adolescents and their families that their contribution to the decision-making for end-of-life care is significant, and that they do not have to decide alone, but that the multidisciplinary team will participate and support them at all times, taking responsibility according to their professional competence.
    3. Professionals should determine the patient’s capacity or maturity to make decisions, taking into account the complexity and importance of the decision and the patient’s personal and family circumstances, as well as the regulatory and legal framework.
    4. Ask patients how they would like to participate (level of involvement) in the therapeutic decision-making and with whom they would like to share the DM process. Repeat the consultation at each decision-making because patient preferences may vary depending on the timing of the disease and the scope of the decision.
    5. Systematically record the therapeutic decisions agreed with the patient and family in the PPC patient’s medical record.
    6. To facilitate the patient’s participation in decision-making, it is suggested that the practitioner consider the following:
      • Generate as much closeness and trust as possible.
      • Address the patient directly, to make it clear that he or she is at the center of the conversation.
      • Give clear and honest information, using language that is easy to understand and adapted to the patient’s level of maturity. Value the use of visual and technological aids.
      • Ensure that the patient understands and comprehends the information received by maintaining an active listening attitude. Verbal explanations may be accompanied by additional written information.
      • Encourage an open and honest dialogue, especially if the decision is complex or there is uncertainty about the prognosis.
    7. Support parents to facilitate the patient’s participation in decision-making:
      • Help them to identify their fears and suffering and to distinguish them from those of their sons and daughters.
      • Advise them to actively and frequently seek out their children’s feelings and opinions.
      • Suggest that the patient can be present during discussions with the healthcare team.
    8. Training of professionals in shared decision-making with patients is recommended.
    9. It is suggested that, in the absence of medical contra-indications, the desire for organ and tissue donation be explored as part of the end-of-life decision-making process.



    In addition to attitudes, conducts, behaviours, and feelings about end-of-life decision-making and patient involvement in the process, the CDG has considered the fundamental practical aspect of the need to assess the patient’s capacity to decide.

    Complete clinical question

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