Palliative care for children at the end of life: an international children’s rights approach

Abstract

This chapter delineates the responsibilities of CRC member States in the context of biomedical interventions and end-of-life decisions, while ensuring the rights of the child to health, to be heard and to participate in the medical decision-making process at the end-of-life. It also addresses the responsibilities of physicians and parents in the complex palliative care decision-making process at the end of life. It shows that children should be taken seriously, since they are active rightsholders. It underscores that this premise not only counterbalances so-called “medical paternalism” and “adult focus protectionism” in situations where pediatric palliative care is provided, but it also shows that involving a child in decision-making at the end of life, especially in pain management, is in its best interest; it can lead to better tailored care, psychological benefits, improved communication, and ethical alignment in the sensitive context where pediatric palliative care is provided at the end of life.