Caring, Not Curing : Nurses Who Treat Dying Children Don’t Want to Leave Emotions at Home

ORANGE â€”  Elizabeth Styffe and 6-year-old Jessica Preece have just met, but already there is a feeling of intimacy between them as they listen to each other’s heartbeats through a stethoscope.

Styffe, 30, a nurse, is sitting on the little girl’s hospital bed, and they are chatting animatedly in soft tones. Jessica looks up at Styffe with a big smile and sparkling eyes as she talks about her illness--cystic fibrosis--her stuffed animals, her friends and the books she loves.

As she listens with a warm, direct gaze, Styffe gently bends the arm she notices Jessica has been holding stiffly--a reaction to the soreness from an intravenous needle that has been removed and will soon be replaced.

Styffe, a member of the school-age/adolescent unit at Children’s Hospital of Orange County, works with terminal patients such as Jessica with her defenses down.

“We were taught in school to keep our emotions out of our work, but you find out early that that’s ludicrous,” Styffe says. “You can’t be effective if you do that. I may not be able to cure, but I can care.”

At the hospital, Styffe says, it’s usual for the nurses to form strong emotional bonds with dying patients, even though that closeness exposes the nurses to the pain of loss and the risk of burnout.

During a crisis, the nurse closest to the patient will be immediately surrounded by supportive staff members who might free the nurse from other duties so that he or she can comfort the family or have a few moments alone.

“They don’t have to be asked; they just appear,” says Janyce Cunnane, a clinical social worker at the hospital. Cunnane says she has often been called upon to help nurses through their grief, especially during times such as the week recently when three patients died in a four-day period.

When a child dies, the medical team will often gather to grieve together, then attend the funeral. The grieving continues at home, where nurses often keep in touch with one another by phone.

The support system that nurses find among their peers at the hospital enables them to give so much more than health care to each patient.

The visit with Jessica lasts only 15 minutes, but by the time Styffe leaves the hospital room, she has already made a special place in her heart for her young patient. Cystic fibrosis is a congenital disease that makes the patient vulnerable to respiratory infections and malfunctioning of the pancreas.

Styffe’s eyes cloud up and she grows pensive as she talks about Jessica and the prognosis for cystic fibrosis patients, whose median life span is about 26 years. But her natural ebullience is back by the time she resumes her rounds.

“Nurses in pediatrics are very caring people. They don’t stand back easily; they reach out,” says Stephanie Frost, 33, a nurse in the school-age/adolescent unit.

The children reach out, too.

“The biggest thing people fear about dying is being alone, so children who are critically ill tend to have open arms. They’re eager to be loved,” Styffe says.

Nurses are constantly looking for ways to bring warmth into the sterile, often intimidating hospital environment, ways to make sure that technology doesn’t take the place of touch and talk.

Often, they also play vital roles in helping children and their families come to terms with death. They listen, offer comfort, help children fulfill their last wishes.

Their work is sometimes so intense that they have a hard time letting go when they leave the hospital, but they wouldn’t have it any other way, say Styffe, Frost and Kristin Knutson, a 43-year-old nurse in the CHOC neonatal intensive care unit.

Before they could work with terminally ill patients, the nurses had to confront their own feelings about death.

“I had to get past my fear and realize that death is part of life,” Knutson says.

Styffe said she needed to be able to visualize her patients in a place free of pain: “I envision kids who haven’t been able to breathe in life running through heaven.”

Caring for the many children who leave the hospital healthy and seeing medical breakthroughs extending lives also help keep them going, they say. But what many nurses find most satisfying in their day-to-day work with dying patients is the feeling that they are making a difference.

Styffe says she still draws a lot of comfort from the role she played about five years ago in helping a 17-year-old cystic fibrosis patient prepare to die.

Mary (not her real name) had been in and out of the hospital--mostly in--and Styffe had been caring for her for four years.

Mary had become one of the patients with whom Styffe felt a special bond, because the two of them had a lot in common. On Mary’s good days, they would chat together like schoolgirls, and Styffe could gave her the kind of emotional support a close friend would offer. When Styffe saw that Mary was having trouble talking openly with her doctor, she began to role-play with her, taking on the part of the physician to help Mary practice being more assertive.

As the end came near, it was natural that Mary would turn to Styffe with the big question.

“Am I going to die?” she asked.

“Do you really want to know?” Styffe answered.

“Yes, I think I’m going to die,” Mary, “and I don’t want you to ever forget me.”

Styffe reassured her that her picture would join the others on the nurses’ bulletin board. Then they hugged and began to talk about Mary’s last wishes.

She wanted to see her dog--which Styffe arranged--and she wanted to make a videotape to be remembered by.

Styffe brought together a group of nurses, doctors, relatives and patients--”with 400 boxes of Kleenex” and a video camera. They gathered around Mary’s bed and listened as she read poems, reminisced and paid tribute to each of them.

She died the next day. Once again, the medical staff gathered at her bedside--this time to say goodby.

“It was a team seeing her through to the end,” Styffe said, wiping away tears.

Many nurses want--even need--to be there when a patient dies. They ask to be called at home if there is a crisis, because they need to feel they have done all they can to help each patient and family.

And sometimes a phone call isn’t necessary. Knutson says she has become so close to some of the babies in the neonatal intensive care unit that she has sensed when they were in trouble. She has called the hospital in the middle of the night a number of times to check and learned that her instincts were right, she says.

When she arrives at the bedside of a dying baby, she says, she helps the parents whenever possible to hold the child despite the tubes and wires that seem to discourage human contact.

Parents sometimes need help making physical contact with older children too, because the adults are intimidated by medical technology or afraid touch will cause pain. Styffe recalls the parents who were sitting helplessly next to the bed of their 14-year-old son as he was near death. She told them it was OK for them to get into bed with him--”They needed permission,” she says. The boy died in their arms about 10 hours later.

Making room for physical touch in a high-tech hospital environment is one of Frost’s missions. She had not been allowed to touch her mother, who died in an intensive care unit.

“I don’t want parents to have regrets that they couldn’t touch their child at the end. We stretch and pull (the rules) as far as we can to give parents the feeling that they’ve done all they could do,” she says. Sometimes, she said, that means having babies baptized while the medical team is trying to revive them.

A nurse may also be a link between parents and children who are having trouble talking with each other about death, Styffe says. Often, the dying children feel safer sharing their deepest feelings and fears with a nurse because they are afraid of hurting their parents or driving them away, she says.

Styffe recalls a 12-year-old boy who, about six hours before he died, was still talking about his summer plans with his mother. The mother, knowing her son did not have much time left, was distraught as she came out of his room and told Styffe: “He hasn’t accepted the fact that he’s going to die.”

But the nurse knew that he had.

“When I was alone with him, he’d say things like, ‘Make sure so-and-so gets my baseball,’ ” Styffe said.

She told the woman about these conversations, and that persuaded her to feel free to initiate more open talk then with the boy.

When Styffe is grieving for a patient, she finds comfort in knowing she was able to help a family face death with a sense of peace.

Styffe also draws strength from her husband, Glenn, who is also a nurse. When she calls from the hospital and asks him to pick her up because she’s too upset to drive home, he understands, she says. “He gives me room to have a day or two now and then when I do nothing but cry.”

Knutson often spends her one-hour commuting time working through grief and letting her tears flow. She also keeps a journal and writes poetry.

Frost says allowing herself to grieve makes it possible for her to continue getting close to children who are expected to die. The death of a 7-year-old cystic fibrosis patient about a year ago was especially difficult for her because he had been doing well and she had been full of hope as she helped him plan his 8th birthday party.

After his funeral, she found a way to comfort herself and the boy’s family: She had the birthday party at her house exactly as he had wanted it.

“You can’t go through this again and again if you don’t work through your grief,” Frost says. “You have to be willing to say: ‘I hurt. I love this child, and I’ll miss him.’ ”

Life is richer for nurses who are able to get close to dying children--and then let go, Styffe says.

“You live on the edge; it makes you aware of how fragile life is,” she says. And she notes that she appreciates her time with her own two children more because of her work.

Frost says the pain of losing patients is balanced by the gifts they leave behind.

“Kids have blown me away with their strength. They never cease to amaze me,” she says. “We take away something from each of them that we can apply to our own lives.”