There should not have “to be a law” about this. But after a doctor allegedly put a do not resuscitate order on a terminally ill baby’s chart without parental consent, the Missouri Legislature is contemplating outlawing such medical authoritarianism. From the LakeExpo.com story:
He was born with a birth defect — Full Trisomy 18 — that ultimately proves fatal for those who carry it, but some children can live for a year or more with it, and Simon’s parents say his doctors never gave him the chance.
He was adored by his family, but he died. Now his mother Sheryl Crosier travels the country advocating to protect families from physicians who might issue a Do Not Resuscitate (DNR) order for a child, without ever telling the parents.
Sheryl believes Simon’s doctor issued a DNR order on his hospital chart, administered drugs known to hinder breathing, and starved him to death, without his parent’s knowledge or consent.
Simon’s Law Missouri HB 1915, “Simon’s Law,” is a bill that would protect the rights of parents concerning any surviving medical choices for their minor children.
A DNR without consent and a decision to unilaterally deny medically-delivered sustenance is a form of “medical futility,” in which doctors or bioethicists autocratically apply their values to end of life or catastrophic care medical decisions.
If informed consent is to mean anything, such value-laden decisions should not belong to the doctor or other strangers, but (except in extreme circumstances) the family.
Otherwise, if a family says no treatment so the patient dies, it will be honored absolutely. But if the choice is to let the patient fight for life, the answer can be like the old sign we used to see in restaurants and shops: “We reserve the right to refuse service.”