The case of Alfie Evans is still resonating around the world, but particularly in the United States. It’s an unfathomable reality for many American parents: frantically seeking care for your desperately ill child, and being told by your government that no, the state has deemed him too sick to live.
While American parents may be counting their blessings that health care in the United States has not yet reached the point of the government playing God, their relief is premature.
{mosads}As the stories of Ryan Nguyen, Jahi McMath, Joseph Maraachli and others indicate, there has been a slow but steady trend in American medicine toward allowing doctors to overrule or simply ignore parental decision-making in the name of “medical futility,” “death with dignity,” and conditions determined to be “incompatible with life.”
The case of Simon Crosier in Kansas, however, has finally compelled states to take action.
Baby Simon was born with a Trisomy 18 — a serious congenital illness that required life-sustaining medical treatment, but one that is not necessarily fatal. Unbeknownst to his parents, however, his doctors placed a Do Not Resuscitate (DNR) order in his medical chart. The Crosiers watched in horror as their three-month old son struggled to breathe while doctors stood by, doing nothing to save him.
In the wake of his death, the Crosiers uncovered the DNR they had not known about, nor had they authorized. Also unknown to them was the fact that, despite Sheryl Crosier’s pleas to feed her son breastmilk, Simon’s medical providers had only authorized “comfort feeds” – drops of sugar water designed to starve a patient to death.
This was in direct contravention to the Crosier’s hopes that Simon would grow large enough to eventually be eligible for corrective heart surgery. Simon died three days before the surgical consultation was scheduled to happen.
As a result of attention by the Kansas state legislature and the urging of Simon’s mother, Sheryl, Simon’s Law was passed in Kansas last year. The law ends the practice of secret DNRs, requiring written parental consent for a minor to receive the order. Missouri and Texas have followed suit, passing their own versions of Simon’s Law.
Other states should be quick to follow their example.
Unilateral entry of DNR orders for very young, very sick children is occurring with a concerning amount of frequency, particularly when it comes to children with genetic disorders. In a 2017 survey published in the journal Chest, half of the responding doctors endorsed unilateral DNR order “as appropriate.” 20 percent of pulmonary critical-care doctors who responded said they had performed unilateral DNR in the previous year.
Again, these are doctors deciding the life-or-death status of children, without the knowledge and consent of their parents. In Texas, Alisha Hauber testified about the DNR order she uncovered in her son’s file as he struggled to survive with Trisomy 18. “They did it without our permission, even when we asked them to take it off,” she told the Houston Chronicle. “They said it was the physician’s right and the hospital’s right.” Nine years after his condition was declared “incompatible with life,” Lane Hauber lives at home with his parents and three siblings.
Whose child is Lane Hauber? Simon Crosier? Ryan Nguyen? Or the countless other profoundly ill children whose doctors declare, without consulting the family, that the time has come for them to die? Do these children belong to the state, or to their parents or legal guardians? Who gets to make the decision, the family who loves that child, or the clinicians who are rendering subjective judgments about quality of life for a patient or a family they may barely know?
Countries around the world have different answers to these questions, as the cases of Alfie Evans (and earlier, Charlie Gard) illustrate. But in the U.S., states which have passed Simon’s Law have put down a marker for parents’ rights, ensuring that the final say over a child’s fight for life will remain where it belongs — with the family. Parents are given the security to make medical decisions for their child that are in line with their values, the advice of their doctors, and their faith.
In April, the parents of Alfie Evans held him as he was taken off life support, remaining alive for five more days. They gave him mouth-to-mouth as his lips turned blue while the doctors stood by, constrained by English judges who used the abstractions of the law to sentence the child to death.
But, as the Chicago Tribune’s John Kass wrote in a searing op-ed about his own experience nearly losing his infant son, “parents don’t deal in the abstract. Parents hold their children. They wonder at the miracle of life in their arms. And they pray.”
Rachel Bovard (@RachelBovard) is the senior director of policy for The Conservative Partnership, a nonprofit group headed by former South Carolina Sen. Jim DeMint aimed at promoting limited government.