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Present at loved one's last moments


Early that morning in the emergency room, with a soft "oh" and a drop of his head, 11-year-old Ryan King stopped breathing. Within moments, a young doctor straddled the boy, pumping his chest. Nurses quickly wheeled the gurney from the exam room to the trauma room. Ryan's mother grabbed her son's panda and stray sneaker and ran after them.

For a few minutes, Donna King was left alone in the hallway, outside closed doors.

But, like an increasing number of physicians around the country, doctors at the Johns Hopkins pediatric emergency department did what was once unthinkable: They let Donna King be with her son. As doctors struggled to get intravenous lines into his collapsing veins, injected him with drugs and took turns doing manual compressions on his chest, his mother climbed under staffers' arms and between IV poles. She cradled Ryan's head and put her cheek against his.

"Mommy's here," she said.

For years, at the most critical moment in emergency medicine - when someone's heart stops - the drill has been the same. Nurses rush relatives out, chaplains distract them and, later, physicians deliver the bad news. But in the past few years, many in the health care field have arrived at a surprising conclusion: It can be good to bring families in the room during resuscitation efforts.

Even though the scene can be graphic, even though most patients in cardiac arrest will die, many family members are more accepting of the death if they witness it. They see the desperate efforts of medical staff, so they aren't haunted by doubts about whether everything was tried. They get a chance to say goodbye.

At least 15 hospitals in Maryland, including Maryland General, Northwest, Sinai, Anne Arundel Medical Center and Western Maryland, are allowing the practice, mostly case by case.

About half of the 1,000 emergency room and critical-care nurses in a recent national survey reported that their hospitals allow families to be present for what's known as a "code." And the American Heart Association unanimously voted to change its guidelines to encourage health care providers to offer the opportunity.

Called witnessed resuscitation, the practice raises all sorts of medical, ethical and legal issues, and has sparked fierce debate.

'A fad'

Trauma physicians worry that relatives will become hysterical and distracting. Others fear families might witness mistakes, or what they think are mistakes, and file more lawsuits. And in an era of crowded emergency rooms and nursing shortages, some say hospitals don't have the space or staff to do it.

"It's a mistake. It's a fad. There are too many potential negatives," declared Dr. L.D. Britt, vice chairman of the national committee on trauma for the American College of Surgeons. "The next thing you're going to want is to sit in the mortician's office and watch your loved one get embalmed."

Supporters believe witnessed resuscitation is part of medicine's evolution toward more family involvement. Several studies have found that relatives observing a failed resuscitation effort reported less anxiety and depression after a death than family members who weren't there. And almost all relatives surveyed said they would do it again.

"It's a great gift," said Donna King, 42.

Ryan, the oldest of her three boys, had been fighting an aggressive form of leukemia for two years. That night in November 2000, his parents found out that the Boy Scout and budding sports statistician had relapsed a third time and needed to be admitted to Hopkins. But the Glen Arm boy wasn't expected to die for a few months, and his parents weren't prepared to lose him so soon.

Now, just hours later, Ryan was on the border between life and death. Donna King watched emergency workers put a long, plastic tube down his throat. She saw them shock him. Before her eyes, her son's fragile chest was turning black and blue.

"You see the horror of it," King said. "You get it." Someone in the room came over and held her. She didn't cry or lose control; she just prayed for strength. She stroked her son's cheek, assured him that she had his favorite stuffed animal and named all the doctors he knew in the room, people she trusted to do everything they could.

But as the minutes wore on, she anguished over whether it was right to keep going until her husband, Stephen, arrived. The doctors assured her that they could continue.

"Daddy's coming," she told Ryan. "Hold on. Daddy's coming."

Within moments, Ryan's heart restarted.

In some ways, witnessed resuscitation is the next step for hospitals that have been letting parents stay with children for broken bones and other basic care. Hospitals have also been relaxing visiting rules, and emergency departments are trying to become more friendly to consumers.

At Hopkins, the state's designated pediatric trauma service, doctors have been bringing parents into resuscitations, and other treatments such as spinal taps, for at least the past few years without problems. Other hospitals have become more open to the idea because their own nurses had personal experiences.

"Nobody wants to die alone," said Jocelyn Fiedler, an intensive care nurse at Atlantic General Hospital in Berlin. Like many smaller hospitals around the state, the hospital is open to family presence. When her great-aunt Anne "Nancy" Sears, 72, suffered a fatal heart attack Christmas Eve, Fiedler stayed with her in the emergency room. "It would have meant a lot to her that somebody was with her," Fiedler said.

At most hospitals, family members who request to be present during the crisis are permitted only when physicians and other staff members agree. The procedures can be disturbing to laymen: shocking a heart, inserting IV lines deep into the chest, performing compressions so hard that the ribs can crack. Ideally, a nurse, chaplain or patient advocate stays with the relative to explain, comfort and, if necessary, escort the person out.

Imagination 'worse'

Families say they can endure the ordeal because it is better than not being there at all.

Several years ago, in a case at Dallas' Parkland Hospital, a mother and father waited all night to see their critically injured 14-year-old son, who had fallen from a tree. Just as they were going into his room, the teen-ager stopped breathing.

His mother, Susan Hott, insisted on seeing her son, Donnie, and the nurse, after asking permission, let the parents in. The act almost got the nurse fired and provoked a debate in the hospital that led to research that found benefits in family presence.

"Those were some of the most painful moments of my life. But my imagination would have been worse than the experience," said Hott. The time allowed Hott to rub Donnie's head and sing his favorite song into his ear. Her husband apologized to the teen for yelling at him earlier in the day. Both parents saw how hard the doctors worked to save him.

"If I was not allowed in there," Hott said, "it would have haunted me forever."

'No going back'

For the medical team, having a relative present changes the dynamic. They say the atmosphere is more sober. Some report that they have developed a deeper sense of camaraderie. And nurses and doctors now face a reminder that their patient is someone's husband or daughter.

"Once we tried it, there was no going back. It was an experience I would never begrudge anyone," said Mary Anne Belanger, an emergency room nurse in Wooster, Ohio, who had originally been a skeptic.

The staff there started the practice in 1994. Now, about two-thirds of their roughly 100 codes each year are witnessed by family members. In one case, Belanger said, a man who was resuscitated later recalled his wife's voice, urging him to fight.

Many relatives wouldn't want to be in the room, but studies and interviews reveal that in almost every case where they are present, they remain composed. Families can also play a crucial role, advising physicians about a patient's medication or wishes for lifesaving steps such as ventilators.

At Peninsula Regional Medical Center in Salisbury, relatives of an elderly woman told doctors to stop cardiopulmonary resuscitation after aggressive efforts failed.

"They came to see it didn't make sense," said Dr. Clark Morres, medical director of emergency services. He has increasingly invited families to be present during resuscitations. But he said it is a difficult decision. "It's a lot easier to just draw the line and say, 'No family allowed.' "

Many physicians have strong reservations. They say they would feel more stress under the eye of a relative. They point to the isolated cases when relatives have interfered with treatment.

One relative flung herself over a patient after doctors started to use a defibrillator, according to a survey for the Emergency Nurses Association. Also, doctors say, there is little time to confirm that a person really is a family member.

"During a resuscitation, there is less than zero time to figure out who's who," said Dr. Gabe Kelen, chair of emergency medicine at Johns Hopkins Hospital. "This area is just plain new, and most of us are supportive of the idea and trying to figure out a way how to do this practically."

Advocates point to a harsh reality: Even with resuscitative efforts, more than 90 percent of people in cardiac arrest will die, whether they were in car accidents, had heart attacks at home or were already in the hospital.

At Maryland General Hospital, Dr. Robert E. Roby, chief of emergency services, said he felt bad that every time he broke the news of a death, family members had the same reaction: They worried about whether everything possible was done, and they anguished over never getting to say goodbye.

That, together with the recent studies, led Roby to decide to allow families in during resuscitations. He is urging colleagues to try it. "It's what every doctor or nurse would insist on if it was their father or mother or child," he said.

The Kings believe it's the natural thing to do. They were there when Ryan was born, and at 10:18 a.m. on Nov. 28, 2000, they were with him when he died.

"We were able to go with Ryan all the way to the end," said his father.

Now, every night, the brothers Ryan left behind, Kevin, 10, and David, 6, wrap up in his blue knit blanket and cuddle with his pillow. And someday, when they are ready, their mother knows they will come to her with questions.

Because Donna King was there for every minute, she will be able to tell them that after Ryan heard her voice, his heart started long enough for their father to get there, that the doctors did everything they could and that she and her husband stood over their brother, hugging him until he was gone. Almost as if he had just fallen asleep.

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