When parents refuse a sick teenager the right to give informed consent: The nurse's role

Objective: To outline the case for child patients who are minors to be allowed to participate in the medical decision-making process and make significant choices. Setting: The paediatric oncology department of a major teaching hospital in Israel. Subject: A 15-year-old boy from a strictly religious Jewish family was diagnosed with acute myeloblastic leukaemia. Relying on their rabbi's advice, the parents agreed to a chemotherapy protocol but refused an immediate bone-marrow transplant using a central vein access device to ease suffering and increase safety and rejected extracting and freezing some of the boy's sperm (the chemotherapy would cause sterility). They refused to let the boy take part in the discussions with the medical staff, or even to know he had cancer. Primary Argument: The authors consider that two principles are decisive - the patient's best interest and informed consent. A teenager who has emotional maturity and understanding is entitled to a doctor-patient relationship based on mutual trust; on their right to know; and their capacity for autonomy (to be judged in light of the severity of the treatment required). The nurse's role is to bring the parents to acknowledge their child's rights; to identify where information is needed; to help the parents express their needs and wishes to the medical staff; to act as case manager and patient advocate; and coordinate between all care-givers. An ethical-problem-solving worksheet is offered to nurses. Conclusions: Nurses must be specifically trained for this mediating role and be appropriately represented on local ethics committees. Systematic decision-making protocols are needed.