End-of-life directives for kids, too

By The Gazette Editorial Board


Families of children with terminal illnesses must endure heartbreaks impossible for most of us to imagine.

With the help of doctors and trusted advisers, they must make difficult decisions not only about treating a child’s condition, but also how a terminally ill child might best end his or her days.

Although they may not be able to control the disease or condition responsible for shortening their loved one’s life, they can take comfort in making end-of-life plans that help the child feel comfortable, safe and loved.

But in Iowa, a little-known law wrests some of that control from caretakers and families. That should change.

Iowa law does not allow advance directives for minors that would allow families to decline lifesaving interventions outside a hospital setting.

That means if emergency responders are called to assist a terminally ill child, they must do all they can to keep the child and transport him or her to the nearest emergency room — even if their interventions go against the family’s wishes and the physician’s treatment plan.

There must be some way that Iowa law can be more balanced — revised to honor parents’ advance do-not-resuscitate directives for their children.

We understand critics of such directives who say a child’s life should be preserved whenever possible, but the tragic truth is not every child will live to adulthood.

If a family has prepared a plan that meets sound medical and ethical guidelines, those wishes should be respected.

That’s the way most states’ laws are written, and is in keeping with the American Academy of Pediatrics’ ethical position, that “it’s ethically acceptable to forgo CPR when it is unlikely to be effective or when risks outweigh benefits, including the parents’ and child’s assessment of the child’s quality of life.”

It’s legal in Iowa for terminally ill adults to create advance directives specifying what, if any, interventions emergency responders should use if they’re called to assist in an emergency situation.

That out of hospital do-not-resuscitate order, as it’s called, legally protects EMS technicians who follow the patient’s wishes in not exhausting every possible lifesaving procedure.

The same should be true for children and their guardians, who now are instead faced with yet another difficult decision in a possible end-of-life event: If I call for help, will responders be legally obligated to intervene in ways that may do more harm than good?

On one hand, EMTs can offer palliative interventions to make the child more comfortable.On the other, are more aggressive interventions that may injure the child and disturb the intimate and caring environment loved ones want for the child’s passing. That’s too much to ask from a grieving parent, already overburdened with heartbreakingly difficult choices.

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