Advances in drugs, medical equipment, surgery and other healthcare have increased the survival of small children with severe diseases. This good news has created modern challenges that may need more attention than our society gives. An increasing number of children are going home with medically complex needs that require high levels of care. The medical problems include airway obstructions, feeding tubes, brain injury, and nervous system disorders. In palliative care cases, these families are spending an average of 73.5 hours per week caring for their medically complex newborns.¹ If the same problems existed for adults, the care families are providing would be covered medical services with skilled nursing. This situation puts families under incredible emotional and financial strain. Paradoxically, shifting the cost and care burden to families increases healthcare spending. Is there a better, more cost-efficient solution for our society?

The Costs of Medically Complex Children to Families

Many children with medically complex needs do not outgrow their complexity. The support needs of some of these children can extend well into adulthood.² More than 43 million U.S. adults provide an average of 24.4 hours of care to a child or adult per week.³ The burden to families includes:^3,4

• Parents less likely to work more than 20 hours per week.
• Parents more likely to engage in casual, irregular employment.
• 52% must drop to part-time work.
• 42% take a leave of absence.
• 31% turn down a promotion because it would distract from their caregiving role.
• 23% lost a job benefit.
• 21% give up their careers entirely.
• This sort of income loss has been estimated to reach $11.6 billion annually.

The Costs of Medically Complex Children to Insurance

Piling this cost on family caregivers may not be saving money for insurance and government. Children with medical complexity account for roughly a third of all pediatric health care costs, and 80% of those costs come from hospitalization.⁶ Research out of the Mayo Clinic found that if pediatric home nursing were available, medically complex newborns could go home sooner.⁷ Dr. Roy Maynard and colleagues found that 68.5% of these babies experienced delayed discharge, and 91.9% of the delays were due to no home nursing available. If home nursing were available, direct medical costs would have been lowered by $54,000 per baby.

That cost increase does not even account for the increase in rehospitalizations that occurs when families do not have adequate home nursing. For medically complex children, the absence or delay of home nursing correlates with a 70% increase in rehospitalizations.⁸ Home nursing for newborns has been found so valuable that a single, well-timed home nursing visit for every newborn, including healthy newborns, has been found to cut medical costs 7.5%.⁹

Healthcare Coverage for Medically Complex Children

Technically, insurance coverage for pediatric home nursing exists, but in practicality, the services are often not delivered. The problem is sometimes referred to as a shortage of pediatric home health nurses. Meaghann Weaver, MD and her research team found that even when insurance approved home nursing, families received 40 hours less home nursing per week than what was approved.¹ They also received half of the approved respite hours. Parents personally spent ten hours per month trying to secure home nursing.

While there are many home care agencies hungry for new clients, they tend to focus on geriatrics. Where pediatric home nursing is concerned, business challenges abound. The cases are less frequent than geriatric cases. Even though the cases tend to be more complex and require a more rarified skill set, insurance usually pays less.

The quality of the insurance coverage may be part of the problem. For instance, families with commercial health insurance were more likely to experience unfilled nursing needs than families with Medicaid.¹ This suggests that commercial insurance in general has shortcomings that leave families less protected.

Conclusion

Medical advances have improved the survival of newborns with severe disease, but consequently created a home care challenge. That challenge is not being met. The burden of skilled care is falling on families at great cost to them, but shifting that cost to families does not appear to save society money either. It turns out that putting skilled medical care tasks on families results in longer and more frequent hospitalizations. Unfortunately, just ordering pediatric home health nursing is not the solution. Families, doctors, and discharge planners routinely have difficulty finding the pediatric home nursing needed. There are signs that inadequate insurance coverage has a lot to do with pediatric home nursing shortage.

References:

1. Weaver MS, Wichman B, Bace S, Schroeder D, Vail C, Wichman C, Macfadyen A. Measuring the impact of the home health nursing shortage on family caregivers of children receiving palliative care. Journal of Hospice and Palliative Nursing. 2018 Jun;20(3):260.
2. Foster CC, Agrawal RK, Davis MM. Home health care for children with medical complexity: workforce gaps, policy, and future directions. Health Affairs. 2019 Jun 1; 38 (6): 987-93.
3. National Alliance for Caregiving, AARP Public Policy Institute. Caregiving in the U.S. Washington (DC): AARP; 2015 Jun.
4. Kish AM, Newcombe PA, Haslam DM. Working and caring for a child with chronic illness: a review of current literature. Child Care Health Dev. 2018; 44 (3): 343–54.
5. Romley JA, Shah AK, Chung PJ, Elliott MN, Vestal KD, Schuster MA. Family-provided health care for children with special health care needs. Pediatrics. 2017;139:1-10.
6. Berry JG, Agrawal RK, Cohen E, Kuo DZ. The landscape of medical care for children with medical complexity. Overland Park, KS: Children’s Hospital Association. 2013 Jun;7.
7. Maynard R, Christensen E, Cady R, Jacob A, Ouellette Y, Podgorski H, Schiltz B, Schwant-es S, Wheeler W. Home health care availability and discharge delays in children with medical complexity. Pediatrics. 2019 Jan 1;143(1):e20181951.
8. Escobar GJ, Greene JD, Hulac P, Kincannon E, Bischoff K, Gardner MN, Armstrong MA, France EK. Rehospitalisation fter birth hospitalisation: patterns among infants of all gestations. Archives of Disease in Childhood. 2005 Feb 1; 90 (2): 125-31.
9. Schonberg SK, Anderson SJ, Bays JA, Duncan P, Felice ME, Frader JE, Heyman RB, Katcher ML, Miller PM, Wolraich ML, Ziring PR. The role of home-visitation programs in improving health outcomes for children and families. Pediatrics. 1998;101(3 I):486-9.