Many families take for granted the ritual of taking a newborn baby home, car seat and curated swaddle blankets in tow, just a few days after delivery. But as critical care pediatricians, we care for babies and children who often don’t fit neatly into these universal experiences.
When our patients go home for the first time, they are rarely newborns. They can be as old as 2, having spent all their lives in the hospital after being born months early, or with devastating disease that has made them dependent on life-sustaining technologies. Alongside their custom car seats, our patients leave with tracheostomies, life-sustaining ventilators, oxygen tanks, suction machines, feeding tubes and pumps, and discharge instructions the size of a textbook — all necessary items to start their journey outside the hospital. Caregivers are given a crash course into medical guardianship, but their journey into the labyrinthine care coordination process is just starting.
From the moment they go home, the caregivers and their children continually need to clear hurdles intrinsic to our complex health care system. The American Academy of Pediatrics defines children with medical complexity as those who have multiple significant health conditions that affect more than two organ systems and require a significant amount of medical care, use life-sustaining medical technology, depend on significant health care resources long after discharge, and are extensively dependent on their caregivers. They need frequent pediatric subspecialist visits, multiple therapies, and often home nursing care. Sometimes, because of insurance or other coverage reasons, the families will not receive the appropriate home nursing or support to attend doctors’ visits and therapies. Often, one parent has to quit their job because a trained caregiver needs to be with their child 24/7 given the significant risk of death when reliant on technology.
All this amounts to a tremendous degree of financial, psychological, and social stress for families of children with medical complexity. Yet, despite the work that goes into caring for these children at home, data consistently shows that home care yields a much higher quality of life for both the children and families. It also significantly reduces health care spending for children with medical complexity. In 2014, while children with medical complexity make up less than 10% of Medicaid enrollees under 21 years old and less than 1% of U.S. children, they accounted for 40% of total Medicaid pediatric spending. As pediatric critical care physicians, we are firsthand witnesses to the level of sophisticated care that families of children with medical complexity deliver on a daily basis — a Herculean task — all to avoid another hospitalization or even death.
One of these incredible caregivers is DJ (not her real name). She is a familiar sight in our unit, constantly present at her daughter’s bedside. DJ’s child has a rare genetic disorder that leads her to have seizures and now difficulty breathing on her own. When her daughter is healthy enough to not be in the ICU, DJ brings her to weekly therapy and doctor appointments. DJ also spends hours calling to make appointments and get insurance approval on custom chairs and beds, as well as giving total care to her daughter in the hours that her home health nurse is not there.
Recently, DJ’s daughter caught a virus that causes the simplest of colds for most people. DJ stayed up all night suctioning her daughter, monitoring her oxygen level, and administering increased dosages of the anti-seizure medications with guidance from her pulmonologist and neurologist. Despite her best efforts, DJ’s daughter’s conditions progressed to intractable seizures and high respiratory requirements; now, she is battling for her life in our ICU. This scenario is all too common in our patient population.
The Covid-19 pandemic has brought new challenges to this precarious balance. Shortages of medication and medical supplies impacted care both in and out of the hospital. Home health nursing — already a crucial and limited resource — became even scarcer, with all 50 states reporting shortages in direct care workers in 2022 leading to widespread disruption of service to children with medical complexity.
Over the past decade, medical advancements have led to improved outcomes for our medically complex patients, meaning they are surviving and living longer thanks to lifesaving technology and medical innovations. As this population has grown, so too have the costs associated with their care, and the complications that result from managing complex health conditions across a lifespan. The pandemic has exacerbated this; medically complex children are hospitalized more frequently, for longer, and use more acute care resources (including ambulance transport to the hospital, emergency room visits, and being hospitalized for days). Patients like DJ’s daughter leave with more and more medical complexity and technology dependence with every visit to the hospital.
We must do more to support them.
The expansion of outpatient medical services to this population is overdue and crucial. One place to start is with virtual visits, which should be widespread and more easily accessible. Children with medical complexity and their caregivers also need increased access to home health and in-home nursing care, and insurance coverage must improve so they can be cared for safely at home.
Some of this starts with a new approach to policy. Quality measures that are relevant to children with medical complexity should be put in place to implement and improve home health support and prevent repeat hospitalizations that lead to worsening illness.
Children with medical complexity need to be recognized as a distinct from adults with chronic disability, as their needs are often very different. Making this distinction should allow for new policies to specifically aid children with medical complexity.
National and state policies should ensure adequate health care coverage for children with medical complexity and limit out of pocket costs, which can become a barrier to obtaining appropriate medical care and necessary equipment for families.
Unfortunately, at the moment it looks like we are heading in the worst possible direction. With the pandemic having been declared “over,” even existing coverage and policies are in jeopardy. After the waiver of Medicaid re-enrollment ended in April this year, more than 500,000 Texan enrollees were dropped from the program in the ensuing month, signaling a potentially rocky future for these vulnerable children.
Caregivers who already have the arduous task of caring for their children at home should not have to fight for them alone. We urge our state leaders not to forget about this population, whose needs are some of the greatest in pediatrics. We need to increase funding to programs such as the Medically Dependent Children Program in Texas and similar programs in other states, to support the growing number of children who have medical dependency. All our children deserve a chance to reach their full potential — but children with medical complexity have the biggest uphill battle of them all.
Anjali Garg is clinical instructor and research fellow in Johns Hopkins Charlotte R. Bloomberg Children’s Hospital Pediatric Critical Care Medicine Department. She is currently working to complete her Ph.D. on the topic of health disparities in pediatric rehabilitation after critical illness. Amanda Ruth is an assistant professor of pediatrics in the division of critical care in Baylor College of Medicine. She practices in Texas Children’s Hospital and has an interest in medical humanities.