Stand By Me

By Peggy Peck
WebMD Feature

July 9, 2001 -- As a pediatric nurse in a large urban children's hospital, Nancy Cychol thought she had a pretty good understanding of the impact of trauma on both her tiny patients and their families. But a painful experience changed that perception.

"Fourteen years ago we had a 10-week-old baby, our firstborn," she tells WebMD. "We were coming home from the church where the baby was just baptized when we were hit head-on by a truck."

The baby was "swept away from us by the EMS techs. It was a total loss of control. The visitation was horrible -- just every four hours for only 10 minutes," Cychol tells WebMD. Her child died, but even as she grieved for her baby, she could not forget the way she was treated by nurses and physicians in the hospital.

"I was appalled at how you were treated elsewhere," says Cychol, senior vice president for patient services at Cook Children's Medical Center in Fort Worth, Texas. Although Cychol worked at Cook, her baby had been taken to another hospital nearer the site of the accident.

Even 14 years ago, staff at Cook worked "to try not to separate parents and children," says Cychol. That approach makes Cook an exception, because even today many hospitals bar parents and family from emergency departments and intensive care units while staff perform life-saving procedures such as resuscitations.

Cychol says that keeping families away is "easier for staff" but much harder on family members. Recalling her own situation, Cychol says that when physicians or nurses object to the presence of parents, she tells them, "Put yourself in their shoes. How would you feel if this was your child?"

'How Would You Feel?'

That question is being asked more and more as staff at hospitals around the country are under pressure to rethink policies that keep family members sequestered in waiting rooms while staff work furiously to sew up wounds or resuscitate patients.

Donald M. Yealy, MD, vice chairman of the department of emergency medicine at the University of Pittsburgh Medical Center, tells WebMD his institution is one of several hospitals "that is currently reviewing policy about family members in the ER."

Yealy sees the current policy review as an evolutionary process.

"Years ago, we used to send physicians out with EMS crews to homes of people suffering cardiac arrest. It used to be that we would always transport the patient to hospital, even if the patient were already dead, because we thought it would be easier on the family," Yealy says.

That changed when physicians started to ask family members what they would prefer. "We found out that in most cases the family didn't want the patient transported," he says.

What most family members want is "the opportunity to see that everything possible is being done, and to be made part of the process," says Yealy.

At Risk for More Lawsuits?

Sigmund Kaharasch, MD, says his hospital is also struggling to formulate a new family member policy. Kaharasch is director of the pediatric emergency department at Boston Medical Center.

"We don't have a policy yet but we are working on one, and this process has been brought forth mostly by our nurses," he says.

Kaharasch says his department is "an urban pediatric and adult emergency department, so any policy it devises has to work for both children and adults. Some people are somewhat skeptical about this [family presence] concept, but they are open to discussion."

He says the literature is pretty clear about the advantage of having a parent or family member present for procedures like intubations or sewing up small wounds. But when more serious situations, such as massive injuries from a car accident, are being tended to, the presence of nonprofessionals becomes more questionable.

"Physicians get very threatened by [having family members present]," says Kaharasch, who nonetheless predicts this attitude will change with time. Just 10 years ago, when he was in training, "it was common practice to never allow parents into the room for anything, even blood drawing," he says. "Now it is routine to allow parents to remain for blood drawing, urine catheters, spinal taps. We give parents the choice, and most want to stay."

And that parental choice, he says, has been validated by research at his own institution that suggests outcomes are better if parents are allowed to stay during treatment for pediatric emergencies.

Some critics of family presence say that having relatives around while physicians work could mean more malpractice suits as family members are likely to misinterpret what they are seeing.

"I have seen no studies to support that belief and I know of no parent who sued after being present at a procedure," says Kaharasch. "My gut instinct is that allowing family members to be present probably reduces the risk for suits."

Policies Differ From Hospital to Hospital

While many hospitals have formal policies on family presence or are working to develop new policies, other hospitals prefer a more informal approach. That is the case at Children's Memorial Hospital in Chicago.

"We don't have an official policy, but most parents are present for any procedure done while the child is awake or under mild sedation," says Children's Memorial emergency physician Jennifer Trainer, MD. "We actually prefer to have the parents present because they can be helpful in calming the child."

When a parent arrives at the hospital with a child, "we try to keep them together," she says, but when a child is brought to the hospital by hospital or ambulance, following a major trauma, the parents will often arrive later, after lifesaving work has begun.

"If the parent arrives in mid-resuscitation we have a social worker talk to the parents right away, but we don't usually bring them into the room," she says.

Donnie's Story

Although policies and attitudes about presence of family members are evolving, this process shifted into high gear after a single incident in Texas.

On Feb. 19, 1994, 14-year-old Donnie Hott fell out of a tree and fatally damaged his liver. He was eventually admitted to Dallas' Parkland Health and Hospital System, where he died the next day. That same day, Parkland nurses Theresa Myers and Dezra Eichhorn started turning wheels that would eventually change policy at Parkland and hundreds of other hospitals.

When Donnie fell out of the tree, his parents first took him to a community hospital near their home in Plano. The boy was unconscious, and during the drive to the hospital, his mother, Susie Hott, recalls that she "began just breathing for him, forcing air into him. I could see he was turning blue."

After initial surgery at the local hospital, Hott tells WebMD, Donnie was taken by helicopter to Parkland. "We saw him for just a few minutes before he was loaded on the helicopter," she says.

At Parkland, doctors again attempted to repair his liver and Donnie was sent to the intensive care unit.

"We waited all night in the ICU and we saw him just one time at 3 or 4 a.m. but just for a few minutes," Hott says. At about 7:30 a.m., nurse Theresa Myers told Hott and her husband that their son was not doing well. As they walked down the long hospital corridor toward Donnie, Myers told them what they could expect to see. As they approached the door, however, another nurse stepped forward.

"She closed the door and said that now was not a good time for us to come in because Donnie had [stopped breathing] again," says Hott.

Upon hearing this, Hott turned to Myers and said, "I really need to be with him."

Myers takes up the story then and tells WebMD that when Hott beseeched her, "I had a flashback to a woman whose husband had died a few weeks before. The couple was married for 40 or 50 years and she asked me to let her be with her husband, but hospital policy barred family from being present. I knew I couldn't do this again, not to this mother."

Myers calmly asked the Hotts to wait while she went inside. "Inside the room I asked the staff to let the parents come in for few minutes. I said I would be responsible, and finally the fifth-year resident who was in charge said it was all right," says Myers.

Hott and her husband were permitted to spend several minutes with Donnie, urging the young wrestler to "come back, get up off the mat," says Hott. Donnie's father had a chance to apologize for an argument the day before.

Being there and seeing "all that was being done and how hard these people were trying helped me in my grief," says Hott. She understands that some doctors worry that seeing a loved one in such circumstances can intensify grief and cause nightmarish memories, but Hott says, "My real memories are so much better than what my imagination would have been."

Tragedy Leads to Change

Following the Donnie Hott episode, Myers was asked to talk to hospital staff and explain why she broke tradition. Dezra Eichhorn, RN, MS, CNS, handled the initial staff debriefing.

First, Eichhorn and Myers surveyed family members of former patients and asked how many of them wanted the opportunity to be present at procedures. "Ninety-six percent said they would have wanted the option," Eichhorn says.

Eichhorn then did a very small survey of nine patients who had family members present during resuscitations and procedures. "Basically, these nine patients said they thought that having a family member present helped them recover," she says. The research was published in the February 2000 and May 2001 issues of the American Journal of Nursing.

The patients said they were "less afraid when a family member is present, felt safer, and felt the family member gave them strength," says Eichhorn, who was recently certified as a clinical nurse specialist in psychiatry and plans to leave Parkland soon to join a private practice. "[Many times] a family member can give care that none of us as healthcare providers can give."

Myers is now director of the emergency department at Presbyterian Hospital, in Dallas. She says Presbyterian has a policy that allows family members to be present if the staff thinks it is appropriate. That means family are present in most cases, says Myers, who adds, "I find emergency physicians very supportive of this concept."

'I Had Done the Right Thing'

While Myers and Eichhorn went on to conduct research, Hott struggled to go on with her life.

"I was very grateful for what Theresa did for us, but I didn't know that it was anything exceptional. For about three years I thought about that day again and again, and I really wanted to talk to someone about it," she says.

Then one day she saw a newspaper article about the research done by Myers and Eichhorn.

"Theresa was talking about this case that started it all and I knew it was Donnie, so I called her," says Hott. Myers was overjoyed to hear from her and to hear "that I had done the right thing."

Hott, meanwhile, says, "I had finally found the one who I needed to talk to."

Since that telephone conversation, Hott has joined Myers in giving seminars on the importance of family presence. "It has become my avocation," says Hott, who says there are a few main points she tries to make when she talks to healthcare and civic groups:

Family members need to be given a choice in the midst of total loss of control.
There are things that need to be said and things that the patient needs to hear -- hearing goes last and so even an unconscious patient can "hear."
A family member's imagination is far worse than the experience itself.
If a family member doesn't see the patient, the survivor will always wonder if everything that needed to be done was actually done.

Ultimately, Hott says, the experience of being by her son's side has helped her grief process and her entire family's.

Take the case of Donnie's younger sister, now 18. She is still struggling with the loss of her brother and doesn't want to talk about it, her mom says.

"But when she does want to talk about it, I will be able to talk to her because I was there and I can share that experience with her," Hott says.The research was published in the February 2000 and May 2001 issues of the American Journal of Nursing.

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