My Kid Depends on a "Non-Essential Treatment"

It seems so simple and logical: to conserve medical resources for COVID-19 patients, hospitals are postponing “non-essential” treatments. How could anyone challenge this strategy? Perhaps, like me, when you heard about it you imagined patients scheduled for tummy tucks, routine colonoscopies, or knee replacements. Then I found out that electroconvulsive therapy (ECT)—the one treatment that keeps my severely autistic son from hurting himself and others—has also been classified as “non-essential” at many hospitals.

Jonah has been getting ECT approximately three times a month for the past 10 years to treat the co-morbid bipolar disorder that drove his frequent and intense rages. During these episodes, he would punch, scratch, kick and bite us. ECT restored Jonah’s quality of life, allowing him to go to school and enjoy his favorite community outings: to Costco, to Wendy’s, to Six Flags. And it is the only thing that is keeping all of us safe as we navigate the disruption of routine caused by the quarantine. I could barely manage Jonah physically when he was 10. Now that he is almost 6 feet tall and 200 pounds, there is no way I could stop him if those rages returned.

How could such a critical procedure be considered “non-essential”? In an upcoming editorial in the Journal of ECT, psychiatrists Randall Espinoza, Charles Kellner, and William V. McCall note “the lack of clear consensus within the medical field on what uniformly constitutes an elective procedure” and urge a “re-evaluation of this label and new appreciation of [ECT’s] place among medical procedures.” Especially important to consider in these times is that ECT typically obviates the need for more resource-intensive interventions, like hospitalization. There is little doubt in my mind that, without ECT, Jonah would end up on a locked ward within weeks, his very dangerous and violent behaviors managed with both chemical and physical restraints.

So far, while our hospital has instituted safeguards—such as checking everyone’s temperature before they go up to the ECT suite and allowing only one person to accompany each patient—Jonah’s access to ECT has not been interrupted. But one friend told me that her hospital has restricted ECT to inpatients only (patients on a maintenance schedule of ECT receive it as outpatients); she is terrified that if the exemption she fought for her son is withdrawn then he will go back to hitting himself in the head up to 500 times per hour. Another reported that the unit where her son receives treatment is still open, but operating on a limited schedule; a third said that her son’s treatment was postponed for a month before she convinced her doctor that such a delay would be enormously risky. But these accommodations are by no means certain. Kellner described to me “huge pressure to shut ECT down during the crisis.”

Perhaps these seem like unfortunate, but relatively isolated examples of harm that we just can’t afford to worry about as the infection rate skyrockets. But this isn’t just about Jonah, or even about all the autistic individuals whose stability depends on continued access to ECT. As Espinoza, Kellner, and McCall point out, disruption of ECT access is just one more example of how “choices and policies often exclude the unique and challenging needs of persons with mental disorders or disabilities.” Within the last week, the Senate has proposed allowing Secretary of Education Betsy Devos to waive requirements mandated by IDEA (the Individuals with Disabilities Education Act), potentially relieving the states of their responsibilities to provide necessary supports to disabled students. Even more troubling are policies emerging from several states, such as Washington and Alabama, that set intellectual disability as a disqualifying condition for receiving ventilation in times of overwhelming demand.

Yesterday, New York Governor Andrew Cuomo urged us to “make sure we’re teaching [our children] the right lessons and the right response.” But it’s hard to see how our kids will be “better people for it” if the lesson they learn is that, faced with tremendous adversity, we chose to sacrifice our most vulnerable citizens. We still have to live with our decisions when this is all over.