On the afternoon of May 31, our two-year-old son, Eli, was coughing and having trouble breathing, so my wife took him to the emergency room at St. Joseph’s Hospital. That was the beginning of three weeks in Children’s Hospital for Eli - 17 days in the ICU and four days in a pulmonary recovery unit.
It was also an up-close view for us of just how complicated it can be to coordinate medical care, a concept that we spend a lot of time studying here at CHI. Coordinating medical care is a cornerstone of many proposals to make health care delivery more efficient, cost less and deliver better health outcomes.
The night Eli finally came home, my wife and I began reflecting on the sheer number of care providers who floated in and out of Eli’s life – all of whom we are incredibly grateful for.
Our rough estimate is that more than 150 people provided care for him – nurses, teaching fellows, attending physicians, residents, pharmacists, X-ray technicians, lab technicians, dieticians and respiratory therapists. Because he was there for so long, various staff rotated on and off his team.
Who coordinated his care for the whole experience? In one sense, it was my wife and me and our family.
Fortunately, both our employers were extremely generous in allowing us to be at his bedside as much as possible, and when we couldn’t be there we called in aunts, uncles and grandparents to ensure 24/7 coverage. Obviously, we always wanted him to have someone he knew and loved in the room for support. At the same time, we didn’t realize how important it would be for us to keep each other in the loop regarding care decisions. While the staff did an amazing job communicating, there were a few times when our intervention provided a necessary check to the massive number of care decisions – nothing life-threatening, but Eli was certainly spared a few unpleasant treatments.
The role we played in helping to coordinate Eli’s care is not unusual, according to Eric Coleman, MD, MPH, an associate professor of medicine at the University of Colorado Health Sciences Center who has done research on how to enhance to role of patients and caregivers in improving the quality of their care transitions.
”Our health care system is fragmented and siloed,” he said in a profile about his work on www.innovativecaremodels.com. “As a result, patients and family caregivers often find themselves performing a significant amount of their own care coordination. While we need to repair what is broken about the health care system, our most immediate need is to support patients and families during the vulnerable time of care transitions.”
After our experience, my wife and I wondered about the patients who aren’t able to have family present all of the time. Single parent families come to mind, as do those with most of their relatives living out of state. The Family and Medical Leave Act (FMLA), which entitles employees to take unpaid leave for family and medical reasons, is an option, but many cannot afford to take unpaid leave, especially knowing they’ll face significant medical bills when the patient returns home. They might not be able to provide that extra care coordination to support the medical providers.
Fortunately, Eli is now fully recovered and will likely have no memory of his ordeal. My wife and I, on the other hand, will never forget it. And we have gained a new understanding of how complex medical care is today. Care coordination is so important, and caregivers and patients can do their part to help the dedicated and skilled medical professionals.