How Should Information Be Given?

A child was born at 27 weeks gestation. CT and MRI showed lack of cerebrum and hydranencephaly. He was discharged after intensive care. Sometime later he had a shunt operation due to increasing head circumference. At the time of the case discussion (where the mother was present) he was one year old. He was fed through a tube—the meals took about two hours and he slept only intermittently for one to two hours. The physicians were critical of continued active treatment of the complications and argued that invasive treatment might cause suffering and perhaps was not in the best interests of the child. The parents wanted all types of infection treated in the same manner as for other children.

• To what extent had the parents understood that the child had a vegetative condition without the possibility for development and with no ability to interact with his surroundings?
• Had the description of suffering made the parents believe that the child was able to consciously experience pain and to communicate?
• If so, could the argument for restricting life prolonging therapy, have had an opposite effect on the parents?

Apply Theory (Specific Professional Healthcare Competencies + Clinical Medical Ethical Principles) to Practice in order to provide Optimal Patient-Centered Care (OPCC)

J Med Ethics 2005;31:73–77. doi: 10.1136/jme.2003.003954