Care in the final hours and days

Caring for a child and his or her family during the last hours and days of the child’s life is emotionally charged, with inherent pressure to ‘get things right.’ Anticipation and treatment of the patient’s changing symptoms are essential to stave off emergency situations or, at least, to be optimally prepared to deal with them. Parents must be actively supported during this time, regardless of the setting, and the availability of professional assistance must be continuous, even if this can be only by telephone in some circumstances. Access to emergency medications must be anticipated in this context. Communication must be seamless, and care providers must be prepared for sudden changes in the desired setting of care. It is much easier to plan for every contingency, knowing that some plans will go unused, than to have to cobble together suboptimal arrangements at the last minute.