By Richard Goldstein
As a pediatric palliative care physician, I provide medical care for families and children living with life-limiting or life-threatening conditions. The work my colleagues and I perform is not mentioned in the headline-grabbing news coverage of Republican promises to repeal and replace the Affordable Care Act. Rather, it falls into the category of the seemingly minor details those lawmakers assure us will be addressed later.
These details, though, should not go unnoted.
Our line of work, for example, has been positively affected by Section 2302 of the ACA, a provision assuring concurrent care for seriously ill and dying children.
Before Obamacare existed, families whose children lived with life-limiting conditions had few options when their children approached death. In all but a few states, parents needed to effectively give up disease-directed, life-prolonging treatments for their children if they wanted the comforts and supports of hospice services.
There is a lot of uncertainty in the treatment of the seriously ill. If keeping a child alive longer meant treating the child’s disease, parents were denied a community-based hospice team, who in other circumstances would help manage symptoms such as uncontrolled pain and breathlessness.
With concurrent care, children with advanced cancer can now receive life-extending cancer treatment yet stay home comfortably, maybe to graduate high school or first grade before they die. Parents can take their seriously ill newborns home, to sleep in their cribs and experience life in a family. It allows dying children to continue to receive care from nurses who have taken care of them throughout their chronic disease course, protecting them from a stressful, threatening transition when they are their sickest.
The Affordable Care Act expanded the available options for our sickest children. It is a mercy to protect children and families from what existed before.
Even with this provision in the books, it has been hard to find hospices to partner with and implement care. But any potential is lost with repeal.
I cannot believe that anyone would want any part in increasing the odds that a dying or seriously ill child will needlessly suffer but I have no idea what to expect in the replacement plans. I have not heard a whisper about caring for these vulnerable children and families.
At this point, the congressional target is on aspects of the ACA that are explicitly budgetary. Explicit changes to the ACA, Children’s Health Insurance Programs and Medicaid will follow. We can only hope that “insurance for everybody” includes those in the terrible circumstances of too many of my patients, an area where the ACA expanded protections.
One in three people living in poverty in the U.S. is a child. Medical debt causes more than 60 percent of American bankruptcies. Most of the uninsured in the U.S. are low-income working families, and one quarter of U.S. children live in a low-income working family.
Their subsidies have been directly targeted. Seriously ill children may not be a big budgetary burden or consideration, but who are we if we do not protect these children?
The Affordable Care Act, with all its successes, needs improvements. As we embark on change, we must remember that the smallest details will affect peoples’ lives at times of extraordinary challenge. We are not just changing a piece of legislation. We are influencing a system that ministers to the sick. How we choose to support and protect our most vulnerable reflects who we are as a people.
Republicans mean to make good on their promise to repeal Obamacare. Their priorities for its replacement are a matter for pure conjecture. They speak skeptically about 2,700 pages of regulations, but those 2,700 pages include important provisions that directly impact peoples’ lives. I expect that seriously ill children and their families will be crowded out of the debate by powerful interests and political slogans. But the loudest voices should not be the only voices. Humanity and compassion should matter, too.
Richard Goldstein, M.D., is a palliative care pediatrician at Boston Children’s Hospital, Dana-Farber Cancer Institute and Harvard Medical School. Send comments to email@example.com.