Relief of suffering is an important goal of medicine and aligns with the professional maxim of ‘do no harm’ and the bioethical principle of non‐maleficence. Capturing what individuals experience or third‐parties sense in terms of suffering is difficult, made harder in the patient who is too young or not able to tell us. This paper builds on the thoughts and experience of Isaacs and Preisz who open a discussion on suffering at the end of life. The discussion is extended by Tobin who recommends the use of goals of care to try to align clinician and parent expectations of what suffering might mean at the end of life. A further paper by Brancatisano makes a comment that family resource and parental suffering might inappropriately guide parental decision‐making at the end of life in cases where suffering is apparent. In my piece, I add my concerns that physicians can write their own narrative about suffering which can compete against the parent's view. Furthermore, suffering can be used as a weapon for physicians to pressure parents towards the medical view.