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 childís 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 oneís 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 ó even if their interventions go against the familyís wishes and the physicianís treatment plan.

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

We understand critics of such directives who say a childís 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.

Thatís the way most statesí laws are written, and is in keeping with the American Academy of Pediatricsí ethical position, that ďitís ethically acceptable to forgo CPR when it is unlikely to be effective or when risks outweigh benefits, including the parentsí and childís assessment of the childís quality of life.Ē

Itís legal in Iowa for terminally ill adults to create advance directives specifying what, if any, interventions emergency responders should use if theyíre called to assist in an emergency situation.

That out of hospital do-not-resuscitate order, as itís called, legally protects EMS technicians who follow the patientís 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 childís passing. Thatís too much to ask from a grieving parent, already overburdened with heartbreakingly difficult choices.

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