Children with Complex Chronic Care Needs: What They Can Teach Us

I was meeting with a pediatrician at my local regional hospital  a week or so ago and we were speaking about the need for comprehensive care management for children with complex care needs and what the hospital and community might do to fill the gap in services. I was reminded that the hospital had its priorities and that pediatrics was a minor part of hospital operations. You can’t argue with such facts, as adult beds far outnumber pediatric beds and children, except for birth, have a greater likelihood to avoid hospitals than the aging adult population.

However, that those pediatric beds are a small percentage of the beds overlook the significance that the vast majority of us (99%) are born in hospitals and the impression that the hospital makes will last a lifetime. Fortunately for all parties the vast majority of us are born healthy and the occasion is joyous.

However for a small percentage of families lighting strikes and their child is born with complex needs; its effect is profound. The grief of dealing with the loss of a perfect child is crushing in and by itself; and then overlaid upon that grief is prospect of being discharged to life that runs shivers up and down the spines of even the physician and staff that care for them. In essence the room that once was in the hospital becomes the room that in large part is duplicated at home.  Except that there are no call buttons for nurses; you don’t get to go home as nurses do at shift change; there are no labs downstairs; meals are not prepared and delivered; no laundry service; no room service by doctors; and the insurance coverage that once paid the hospital handsomely evaporates; and dollars that were poured into educating medical staff for years may well be replicated for the parents into a 10 minute briefing session by the nurse 30 minutes before discharge.  There is a calamitous disconnect here. You have parents who have no clue how they are going to survive being discharged by clinicians who have never experienced an in home duplication of hospital equivalent care without the resources or the training. Is it any wonder discharged patients  show up at the emergency room sooner than later.

One might understand the health system’s neglect of such a minority population if it were minor in all respects. However when it comes to the bottom line, pediatric complex chronic care is not a minority population.

The proportion of inpatient pediatric admissions, days, and charges increased from 1997 to 2006 for any CCC (complex chronic condition) and for every CCC group except hematology. CCCs accounted for 8.9% of US pediatric admissions in 1997 and 10.1% of admissions in 2006. These admissions used 22.7% to 26.1% of pediatric hospital days, used 37.1% to 40.6% of pediatric hospital charges, accounted for 41.9% to 43.2% of deaths, and (for 2006) used 73% to 92% of different forms of technology-assistance procedures. As the number of CCCs for a given admission increased, all markers of use increased. 

One day we might learn that if don’t serve well the least and youngest  among us who are born into chronic illnesses, we may never learn the lessons that will help us overcome the burdens of chronic illness as we age.