How we as a nation care for our most fragile children is under imminent threat. Every year, thousands of children die of terminal disease like cancer, congenital anomalies and neurological disorders. Countless more live with the burden of complex chronic illness; day in and day out, their families never know when the next crisis will occur or whether the next exacerbation will be the last. These children and their families benefit greatly from the Affordable Care Act — particularly a little-known part titled the Concurrent Care for Children requirement (section 2302) — now facing potential repeal.
Everyone with a terminally ill child has a complicated relationship with hope and mortality — and balancing it with the care they can afford. Each of these parents hopes for the best even as they struggle to prepare for the worst, and they all try to get the best possible care for their child up until the very end of their child’s life. One of the hardest choices they face is when to start preparing for their child’s death, an unfathomably painful transition greatly mitigated by the existence of hospice services. This is a difficult choice, but not a cruel one, since parents are not currently asked to forfeit life-prolonging treatments in order to get help from hospice professionals. They do not have to pick between their hope in treatment or help at this most vulnerable time of their lives — at least not right now.
The ACA makes all children up to the age of 21 enrolled in Medicaid or the Children’s Health Insurance Program eligible for concurrent care — meaning that their families have coverage to access hospice benefits even while continuing to see their primary providers and pursuing disease-directed therapies. The hospice benefit enables eligible children and their families to receive home-based services like physical, art and music therapy, as well as visits from social workers and others who are able to help parents and siblings with coping. If the child acutely becomes sicker, regardless of time or day, a hospice clinician with whom they have already developed a relationship will be available to come to the home to help evaluate the child, manage any symptoms and provide the child and family with support. Under the ACA, all of these additional services are available to children covered by Medicaid or CHIP through hospice and palliative care services at no additional cost. Though several states had previously offered mechanisms for children to receive some degree of concurrent care, it is difficult to overstate the degree to which the passing of the ACA has impacted the care of children facing life-limiting illness. Which makes it all the more critical, now that the survival of the ACA is in question, that we remain aware of what these children and families stand to lose if the concurrent care clause is thrown out.
Take the case of Billy, a composite of any number of patients we care for in our role of (as) pediatric palliative care clinicians. Billy is a three-year-old boy who was developing normally until just after his first birthday. The changes started subtly, but soon he began to regress and developed seizers (seizures) that a cocktail of medications could only partially control. Workup led to a diagnosis of a rare genetic disorder. Billy will one day succumb to the disease. But how long that will take and what his life will look like until then depends heavily on decisions made about different interventions, ranging from medications to a feeding tube or a tracheostomy.
Given his poor prognosis, Billy’s parents were offered the option of enrolling him in home hospice. They were hesitant at first: Billy’s grandmother had recently died of progressive cancer, and his parents were still stung by their experience of having to give up on all chemotherapy in order to access hospice benefits for her in her final days. They felt that they had been forced to trade in their hope, however faint, for the expansion of care that hospice offered. But when it came to Billy’s care his family didn’t have to make this choice, thanks to the brief clause tucked into the ACA.
With the benefit of concurrent care, our pediatric palliative care service has been able to engage Billy’s family (and even, to some degree, Billy himself) in discussions about goals and values, and to enroll him in home hospice not in place of his regular medical care, but in addition to it, as an added layer of support. Billy’s parents have not given up hope: He still sees his regular clinicians at the hospital, still receives an experimental medication in the hope that he improves. They are hoping for the best while still preparing for the near certainty, barring a miracle, that Billy will continue to decline and die.
Forcing families like Billy’s to choose between disease-directed therapies and hospice care is not only a cruel proposition, but it ignores the way in which families caring for seriously ill children actually make decisions — sometimes over the course of weeks, months or even years.
The ACA was never perfect. But we must work harder than ever now to fight against the irrational wholesale destruction of “Obamacare.” Now more than ever, with the imminent threat of repeal, we need to draw attention to the aspects of the ACA that must be not only preserved, but expanded. The concurrent care clause has completely altered how we are able to care for seriously ill and dying children. Undermining this legislation will severely limit our ability to provide them the best care possible and will surely lead to immeasurable suffering.
Waldman is the incoming associate chief of the division of pediatric palliative care at Lurie Children’s Hospital of Chicago, and the author of the forthcoming book This Narrow Space: A Pediatric Oncologist, His Jewish, Muslim, and Christian Patients, and a Hospital in Jerusalem; Adrian recently completed the Pediatric Palliative Care Fellowship at Columbia University Medical Center.