Family-centered care and the PICU
A hundred years ago virtually all decisions about how to care for sick children came from the child’s family. It was the norm. By mid-century, though, things had changed significantly. Medical professionals—doctors and nurses—were making more and more of these decisions. In some cases families were even actively excluded from key decision-making. It was a time of paternalism, the notion that the doctors always knew the best thing to do. Parents were also physically shut out of the process. For example, when I began my pediatric training in 1978, families were excluded from the pediatric intensive care unit for long stretches of time by restricted visiting hours. If their child needed some sort of a procedure, such as an intravenous line, the parents were often told to leave while it was being done.
These days the pendulum is swinging back with the increasing acceptance of what is called family-centered care. The notion is pretty simple: parents are encouraged to stay with their child as much as they like (although we do try to make sure they are getting some breaks from the PICU), and we involve them in all significant decision-making. Many PICUs involve the parents in the ritual of bed-side rounds, the time when the entire care team goes around the unit and discusses each child’s case. This particular innovation has been greatly helped by changes in the physical layout of the PICU. Thirty years ago most units were just one open room with beds or cribs arrayed around the walls. Now most newly constructed PICUs have private rooms. This is important, because parents don’t want their child’s case discussed in detail within earshot of other parents.
These days most parents also stay to watch and comfort their child during procedures (although a few do choose to leave during them). Even though we use sedatives and pain-killers to minimize the discomfort of procedures, having a parent at the bedside is enormously helpful. This is particularly so during those rare and tension-filled times when we are performing cardiopulmonary resuscitation (CPR). When parents are present, though, it is important to detail a member of the team to sit with them and explain exactly what we are doing and why.
Nearly all parents think this is a good thing. Many have told me their imaginings of what I am doing to their child is far more stressful to them than actually watching me do it. Some physicians are uncomfortable with this notion, since it lays bare some of our ignorance and fumbling. But we need to get used to it, both because it is the wave of the future and because it is the right thing to do.