What I did: Pediatric subacute to chronic critical care 1997-2003

A local nursing home expanded its care to include more complex children, some dependent on a mechanical ventilator. Following this, there came problems with state regulators regarding very quality level of care offered. The facility requested the medical director from the Department of Pediatrics. Because of the complexity and the use of mechanical ventilators there was little interest in this position. I had become interested in the needs children while I was caring for them in the Home Mechanical Ventilator Clinic so I accepted the position.

When I began working there I observed that the staff did not recognize the fragile physiology of these children. To help them understand the risk and their role in helping the children I invited everyone to a barbecue in the parking lot. We would have the picnic for 2-3 hours and all would come.

I heard everybody dividing up the time so that somebody would always be in the facility. Because there was no risk of death and it was fairly safe, at least that is what they had told me, I told them nobody would be in the facility during our picnic, we would all have fun together. Individually or in small groups they came to me and said they could not do that, at least one of the children might die during the picnic and someone needed to stay nearby.

After a number of people shared this same concern with me I pointed out to them that, yes, these children can die but none had. If a child could die in the next three hours if we all left, then that means a child did not die in the last 3 hours because of the care they gave. They had saved the life of one of the children, and had even saved the lives of at least six children that day.

Now we could discuss how these children die and the things they do that save a life on a routine basis. Everyone at the facility is a lifesaver.

It now became easier to discuss care for these children. Over time I presented this work at a NASA safety conference, an Institute of Medicine committee on patient safety, and a Joint Commission special study group. I will write about hat we did in later blogs. It involved the OODA Loop, studies of expertise and who you compare yourself to, clinical evaluation, refined objectives for care, how to effectively describe your observations and experience, and how to work in a world where you and your patients are not respected.



Most important, our over-arching goal for these profoundly handicapped children became “make each child smile.” Each caregiver had smile as their responsibility … and pleasure.