Better Off at Home — How We Fail Children with Complex Medical Conditions

Better Off at Home — How We Fail Children with Complex Medical Conditions Charles A. Newcomer New England Journal of Medicine, Ahead of Print.

My child would be better off at home.” At the outset of my career as a pediatric hospitalist at a major children’s hospital, I would have dismissed a statement like that from a parent. While I would have admitted that improvements could always be made at our hospital, I would have defended the wonderful care we provided. I would have attributed such a sentiment to the simple fact that hospitalizations were always going to be stressful for children and their families.

But 3 years ago, my husband and I became fathers to a little boy with end-stage renal disease. Our son was on daily peritoneal dialysis in our home for more than 2 years before he received a deceased-donor kidney transplant. He was hospitalized 16 separate times before he turned 4 years old.

My husband, who is not a medical professional, expressed concerns about our son’s care long before I did. Things that appeared to me to be routine mistakes seemed outrageous to him. Medications would be ordered incorrectly because the dialysis clinic’s records weren’t visible to the inpatient team. At times, rounds were conducted without our input. Doctors who didn’t know our son well would provide conflicting explanations for complicated problems.

In spite of those issues, so many things were going right, and I knew how hard the team was working. “These things happen,” I told my husband. Rather than trying to champion changes that would improve our son’s care, I would instead try to help my husband work through his frustrations with mindfulness exercises. I would ask the social worker to talk to him. “He just needs more support,” I would say. But then a few difficult experiences changed my perspective.

There was the time we were discharged home with the wrong concentration of Epogen (epoetin alfa) because our home concentration wasn’t on the hospital’s formulary. The numbers on the bottle were so small I didn’t notice the change. To achieve the correct dose, we would have had to inject a significantly larger volume. Instead, we continued injecting the same volume we had given before the admission. When we checked our son’s labs weeks later, his hemoglobin had dropped so low he was at risk for needing a transfusion. Fortunately, that didn’t happen.

The next time he was hospitalized, we brought our home Epogen with us, but the pharmacist said she couldn’t confirm that it had been stored properly in our house and insisted that we use the hospital’s supply. But there was no way I could inject our son with such a large volume, so I secretly used our home supply and wasted the pharmacy-dispensed doses. I felt like a criminal doing it, especially because I myself had strongly advised my own patients’ parents against giving medications that hadn’t been verified by our pharmacy. It was, I’d told them naively, a patient-safety issue.

Months later, our son was admitted to the pediatric ICU for urgent dialysis to clear a toxic medication. We waited for several hours for the dialysis team to connect him, a delay that the dialysis staff would eventually blame on the pharmacy and that physicians would blame on the dialysis unit. The next morning, the attending discharged us after I pleaded with her to please let us go home, where I believed we could do dialysis more safely and efficiently. “He’ll be better off with us,” I told her.

It’s true that children’s hospitalizations are always difficult for families to bear. But the frequent and often prolonged hospitalizations faced by families of children with complex medical conditions have additional stressors: financial challenges, an increased risk of medical errors,¹ a substantial loss of privacy, and a constant upending of family routines. But one stressor that’s perhaps the most painful is also one that is invisible to many physicians. We task families with keeping these fragile children safe at home, yet when they are sick enough to require hospitalization, we ask families to entrust their care to a network of providers who are not as familiar with their needs and to an array of services and hospital policies that sometimes seem designed to do them harm.

My family’s experiences have profoundly influenced my own practice of medicine and have shown me how we, as individual practitioners, need to change. They have also underscored the need for broader reforms that are critical to improving the care of children like my son. Some changes are admittedly simpler than others.

For instance, we as clinicians should always begin our rounds by asking parents about their concerns. We know that patient- and family-centered rounds that take family concerns into account can reduce the risk of medical errors.² Family involvement in rounds is especially critical for children with complex medical conditions, who are disproportionately at risk for being harmed by such errors.³ The risk seemed particularly acute for our son when he was hospitalized with a respiratory illness and cared for by a team that was unfamiliar with his care. We were thankful for physicians who took the time to ask for our input, allowing us to correct errors or misunderstandings. Participating in this way also significantly reduced the stress we felt about the risk of harm.

We should also strive to spend more time with our patients and their families. My son gets better care when the team routinely comes to see him more than once a day. I still remember the pediatric intern who came to sit with us in the afternoons during his first prolonged hospitalization. Her visits were brief, but free from the pressure of rounds, we would remember to share details with her that helped her better understand our son and his needs.

In addition, caregiver support programs should be continued during hospitalizations. Programs like California’s In-Home Supportive Services (IHSS) provide families with critical financial relief that allows a family member to care for a child at home without a burdensome loss of income. Yet when children in the program are admitted to the hospital and are at their most vulnerable, IHSS stops paying and doesn’t resume this financial support until discharge. Many of these families are already experiencing financial hardship, and this policy robs them of critical support at the precise time they need it most.

At the same time, health care teams and hospitals caring for children like my son also need more support. It is long past time to increase reimbursement rates for Medicaid, which covers more than one third of children nationwide. Although Medicaid reimbursement rates vary by state, they are substantially lower than those for Medicare. This long-standing inequity has many downstream effects that disproportionately affect children with complex medical conditions. Although children lack the political power wielded by patients covered by Medicare, they need and deserve the same high-quality health care that Medicare patients receive.

Our son is now a joyful, thriving preschooler, but we know future hospitalizations are inevitable. It is our hope that we can be part of improving care for families like ours, so that the next time our son needs to be admitted, we can feel confident that he will truly be better off in the hospital.