A nurse hired to fill a gap in the schedule was assigned to care for a 16-year-old girl in the final, painful stages of cancer, which had spread throughout her spinal column and beyond. Her first day on the job, the temporary nurse walked in, closed the door behind her and announced to the young patient: "Get up out of that bed. You get down on your knees and repent before God for the sins you committed, because you did something very bad to deserve this illness."

Another RN, who'd been caring for an infant who was not expected to live, grew close to the dying baby. When the baby died, the nurse felt a tremendous sense of loss-so much so that she snatched the infant from its parents and insisted on holding it in her arms.

"These stories, terrible as they are, show how nurses caring for dying children have to avoid the extremes," said Ann Armstrong-Dailey, who founded Children's Hospice International in 1983.

"They need to put their ego in their pocket and accept where a patient and family are coming from. The patient's care is first and foremost, not the RN's agenda or personal feelings."

The Alexandria, Va.-based nonprofit agency seeks to raise awareness of issues surrounding pediatric palliative care.

Between 75,000 and 100,000 children die every year in the United States from progressive illnesses such as cancer, muscular dystrophy, cystic fibrosis and congenital defects, Children's Hospice International reported.

Nurses are a vital bridge between patient, family and physician. Often, it is a nurse who must explain the consequences of different treatments and implement the parents' choices, which is not always easy, said Pat Mehnert, MN, RN, assistant clinical director of Hospice of Boulder County in Lafayette, Colo.

"It's a fine line, but I have to follow the parents' lead, even if in my heart I thought it was the wrong choice," Mehnert said.

"Even if after I explain that this baby with a birth defect, who's clearly going to die, is suffering because the family has chosen to keep it on a feeding tube, even if that's what's causing the nausea and abdominal pain, I have to keep it in."

The nurses who care for these children have to deal with a variety of issues: tense family dynamics, moving from a cure-based care model to a palliative one, and their own awareness of mortality.

A job in which losing a child is the norm can lead to psychological stresses in the caregiver, said Suzanne Toce, MD, neonatologist and director of the palliative Footprints program at SSM Cardinal Glennon Children's Hospital in St. Louis.

"[It is] especially [true] if nurses have a child at home who's a similar age to the one they're caring for; they can feel a sense of failure," Toce said. "It's a blow to their professionalism.

"We're so much aimed at curing that shifting to 'mere' comfort care can be very difficult. That's why it's important to involve nurses in the process, and to have them talk with the family and the patient, so that when the time comes to withdraw they know it was a group decision. The nurses won't feel like an afterthought," she said.

Cynda Rushton, DNSc, RN, coordinator at the Harriet Lane Compassionate Care program at Johns Hopkins Children's Hospital in Baltimore, said, "We have a very limited language for talking about childhood death. As a society, we tend not to have the words for it.

"Children are supposed to be our hope for the future. When they die, it's a challenge to that fundamental hopefulness. So parents tend to deny and resist a lot.

"They may not always see the consequences of continuing a useless course of treatment to the child's remaining quality of life. That's because, as a society, we deny that children die."

Wise old souls
Something that complicates the process of caregiving-and humanizes it-is that dying children are not naive, said Melanie Patterson, RN, director of pediatrics at City of Hope Cancer Center in Los Angeles. "After a month of treatment, children are very knowledgeable about their situation. Depending on the age of the child, we might speak in a more figurative language. We tell the kids they're 'going to heaven' or 'going to see grandma' and other people who passed away before them.

One little girl said, 'I'm going to be an angel for Halloween.' That was her way of telling us that she knew what was happening to her. And she did die on Halloween. And she was an angel."

Mehnert agreed. "I've met a lot of wise old souls who happened to be 12 years old. They're ready to go, but they're worried about Mom or their siblings: 'What's going to happen to them when I die?'

"We almost always develop a nice relationship, because I'm there to focus on the kid's comfort. With me, there [are] no needlesticks, no taking blood, nothing that hurts. That's why I have more credibility when I say, 'It's OK if you need to go. We'll take care of Mom.' "

But grief-stricken parents might not always display such calm or friendliness toward nurses, said Randi McAllister, Ph.D., director of pediatric psychology at City of Hope.

"The RN doesn't come quickly enough, or she's not efficient. The family can get angry and demanding, they second-guess everything the nurse does, or she might get attacked as soon as she comes in. We try to help both parties understand that this aggression is the manifestation of anxiety, depression and guilt."

Nothing in place
While such concerns come up in many end-of-life situations, no comprehensive model of care designed specifically for children exists, said Marcia Grant, DNSc, RN, director of research and education at City of Hope.

As part of the End-of-Life Nursing Education Consortium project-a national educational program to improve end-of-life care funded by the Robert Wood Johnson Foundation and spearheaded by the American Association of Colleges of Nursing and City of Hope-Grant co-authored the nine-module curriculum for nurse educators. But the project has no children's module.

"It's something we need to address," Grant said. "Such a module would include pain assessment and management on a pediatric model. Children express pain differently than adults, so we need to have nonverbal, pictorial and preverbal methods for assessing pain, especially in the case of infants.

"Crying, restlessness and irritability are clues we can use to monitor the discomfort that escalates for 60 percent to 80 percent of patients as death approaches. We also need to incorporate support of the family and bereavement concerns, for staff as well. And more creative ways of communication, like art and music therapy."

Additionally, many institutions offer nurses the opportunity to discuss their feelings about patients and process grief in a supportive environment. Often, RNs will attend memorials and meet with families, monitor each other for signs of stress and share memories of former patients.

Several institutions have pediatric palliative care programs in place or in development, including Cardinal Glennon's Pediatric Approach to Hospice Support and Footprints and the Children's Hospice International Program for All-inclusive Care for Children and their Families, a demonstration model program for improving children's access to hospice care, which recently received a $1 million appropriation from the U.S. Health Care Financing Administration.

These reforms have been long in coming. A National Hospice and Palliative Care Organization study reported that less than 10 percent of dying children receive the sort of hospice care that more dying adults now receive.

In June, an Institute of Medicine report recommended improvements in childhood relief from suffering, education of caregivers and more health coverage for these services.

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Safe haven

Sjany de Groot, RN, has been implementing a pediatric end-of-life care model in her San Luis Obispo, Calif., home nursery for more than 27 years. The large house, facing a quiet park, looks as if it were imported from Holland, de Groot's native country. Inside, the house opens to a large kitchen and a comfortable living room decorated with pictures, bric-a-brac from the Netherlands and a cage of parakeets.

Down a narrow corridor, the space opens into a smaller living area with a television and scores of dolls and other toys. Just around the corner is the literal and emotional heart of de Groot's home-a room with rows of cribs, which at this time is home to 13 children who range in age from 4 months old to 15 years. Most, if not all, will spend their last days here.

De Groot, a diminutive but hale 73-year-old woman with a ruddy complexion, looks like most people's conception of Mrs. Claus. She maintains an upbeat disposition, even while recounting one tragedy after another.

"We've had her since birth," she said, pointing to a 9-year-old, who stares at the ceiling with a vacant expression. "Her mother was a drug addict. She has seizures, she's been critical since she was born. They said she wouldn't live, but she's still here." Another child has spina bifida, and a curly-haired boy was badly abused. Others were born prematurely, or were victims of drowning resuscitated too late to save them from severe brain damage. Others suffer from diseases.

Despite the children's health conditions, the de Groot home, funded through donations and some state assistance, is a cheery place. Light streams in from large windows, walls sport brightly colored pictures and a kindergartenlike decor, and the constant bustle and racket of children fills the air.

In addition to her own grown-up biological children, de Groot adopted two of her charges, one of whom is paraplegic but otherwise in good health.

The de Groot home nursery, a shoestring operation closely watched by cost-cutting government agencies, nonetheless gives its patients the palpable comfort of dying with a minimal amount of suffering, and under the most attentive, loving care.

"Elsewhere, these kids would wind up in some managed facility with lots of others, where there wouldn't be enough nurses to give them the proper attention," said de Groot, who runs her home nursery with a staff of 11, which includes herself and a handful of CNAs. "But here we take care of them no matter what. We give them the critical care they need right away if they have a seizure or need their meds."

Nevertheless, de Groot is embroiled in legal wrangling with Medi-Cal, which is demanding more than $200,000 that it claims the home nursery improperly billed to the agency.

Coming after several years of late payments, sporadic coverage and threats of closure from a slew of state agencies, this dispute may finally do in the nursery. But de Groot long ago learned to separate this aspect of business from the important work of care.

She picks up a microencephalic infant with a cleft palate and a tuft of brown hair on his head. "They tell me he doesn't feel anything, but when I hold him he likes it." The child emits a strained cry. "Good, good," she said. "I like it when he screams. It's good for him." She puts the infant back in his crib.

"We don't expect him to live much longer. But we'll take care of him until he's gone," de Groot said.