Families may gather around a terminally ill child to provide an intimate and loving end-of-life environment, but if parents or bystanders call 911 out of panic, they sometimes prompt a rescue process that is out of their control.

The summoned emergency medical services technicians must do everything possible to keep the child alive and transport the child to the nearest emergency room, even if that goes against family wishes and the physician's treatment plan, said Dr. Paige Volk, a pediatric critical care physician at the University of Iowa Children's Hospital.

While terminally ill adults can have advance directives from their doctors, forbidding such interventions outside the hospital, a little-known Iowa law does not allow the same for minors and their parents.

The law puts Iowa out of step with the ethical position of the nation's largest association of pediatricians and with an increasing number of states.

Five years ago, only 17 states had laws allowing advance directives for minors. In the past five years, the number has grown such that Iowa is now in a “large minority” of states, said Dr. Armand Antommaria, pediatrician and chairman of the ethics committee and ethics consultation service at Primary Children's Medical Center in Salt Lake City. Utah allows such directives for children.

The American Academy of Pediatrics' stance is that “it's ethically acceptable to forego 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.”

“I have had to make families (and) patients aware of what would happen if EMS is contacted during a stressful (possibly end-of-life) event at home,” Volk said.

EMS technicians might use chest compressions, shock the heart, insert a breathing tube or any other procedure to revive the child. In some cases, such interventions can actually cause additional injury to the dying child.

“When you don't have a statute like this, EMS personnel are basically taught to save the patient, get them to the emergency room still breathing. If there's a problem, let them sort it out (at the hospital),” said Sheldon Kurtz, a University of Iowa law professor and expert on health legislation.

How often such situations occur in Iowa could not be determined, but according to a 2001 study in the journal Pediatrics, 5,000 children with complex chronic conditions were in the last six months of their lives on any given day in the United States. Privacy laws prohibit health care providers from revealing specific cases.

Iowans 18 and older with terminal illness can control treatment outside of a hospital by obtaining an advanced directive, known as an out of hospital do-not-resuscitate order. Patients with such an order wear a necklace or bracelet that alerts EMS personnel not to attempt resuscitation. The order provides legal protection for EMS technicians to withhold care.

Iowans younger than 18 cannot obtain this advanced directive, but their physicians can order resuscitation to be withheld as long as they are in the hospital, said Katrina Altenhofen, children's program manager for the state's Bureau of Emergency Medical Services.

Volk, the UI pediatrician, supports revising Iowa's law to allow minors with life-shortening illnesses to have out of hospital do-not-resuscitate orders.

“If a patient's wish is to experience end of life in the comfort of their own home, I feel strongly that a life-threatening event in a public place or a 911 call from home should not lead to an unwanted resuscitation or admission to the hospital,” she said.

Such legislation is not on the agendas of legislators or the medical establishment.

None was proposed last legislative session, and no groups have formed to carry it in the upcoming session, which begins Monday, said Sen. Amanda Ragan, D-Mason City, chairwoman of the Senate Human Resources Committee.

The Iowa Medical Society has no plans to advocate for it, either.

“We're comfortable with how the statute is structured,” said Karla Fultz-McHenry, vice president of public policy and advocacy for the society. “We think it is working well for patients and EMS in the state and adequately protects our physicians.”

Spokesman Tom Moore said the UI does not have a position on the issue.

For patients 14 and older who have decision-making capability, UI Hospitals and Clinics guidelines read: “The decision to write a (do-not-resuscitate) order should be based on the consent of the adolescent patient and his or her parents or guardian.” These guidelines only apply to patients who are admitted to the hospital, Moore said.

Altenhofen, the state's EMS program manager, said hospitals can send terminally ill children home for hospice, but Volk said Iowa's rural nature makes pediatric hospice inaccessible to many.

Rose Eaves of Iowa Hospice Service said her organization serves 90 counties but doesn't have the qualifications needed to offer specialized pediatric care. Central Hospice of Iowa offers such services but covers only 35 counties in central and southern Iowa.

In the hospital, withholding resuscitation comes after parents consult with doctors, nurses and social workers. They discuss whether to make the child more comfortable with palliative care, such as pain medication and oxygen, or whether to prolong life through aggressive interventions, like surgery and mechanical breathing.

Palliative care physicians often refer to the latter as “prolonging the dying process.”

Determining when to withhold resuscitation presents a difficult ethical question.

“The state on the one hand wants to honor a human being's right to refuse life support, but they also want to protect the constitutional right to life,” said Dr. Lauris Kaldjian, an associate professor of internal medicine and director of the program in bioethics and humanities at the UI Carver College of Medicine. “By giving freedom, you're providing opportunities for some things to be misunderstood or even misused.”

Steve Spenler, Johnson County Ambulance Service director and a 20-year EMS veteran, did not know about the prohibition on pediatric, out of hospital do-not resuscitate orders. He said his emergency workers and parents have never disagreed on resuscitating a terminally ill child.

He said paramedics would exercise discretion, look at the whole situation and talk with family, bystanders and a physician. “Based upon the information provided, it would ultimately be the physician's decision,” he said.

Dr. Charles Jennissen, an emergency physician and director of UI pediatric emergency medicine, said a lack of do-not-resuscitate orders in an emergency could cause problems, because EMS personnel would not be fully aware of medical issues or whether the patient is terminally ill.

“Obviously, an out of hospital do-not-resuscitate order would be helpful, particularly for EMS,” he said.

Families caring for a dying child at home may panic when death nears and call 911, said the state bureau's Altenhofen.

“When you are in the panic moment, you're calling (911),” she said. “You're having a feeling in your mind what that end looks like, but it's not like TV.”

Antommaria, the Utah pediatrician, said a lack of legal directives for children places parents in a difficult dilemma: “Do I call EMS at the risk of receiving CPR, or do I forgo benefits EMS can provide?”

EMS technicians can still provide palliative care to a dying child, he said. They can relieve discomfort and suffering, like giving oxygen for acute shortness of breath or giving pain medicine.

“It doesn't affect a huge number of children, but it has important implications for the children it would affect,” he said.

- By Gabe Gao, IowaWatch