The Birth of Pediatric End-of-Life Service
Lisette Hilton

Children do die, and it takes a special kind of nurse to meet the needs of these children and their families.

Nurses were behind the adult hospice movement, and now they’re among the pioneers of an international push toward pediatric centered end-of-life care.

In contrast to the thousands of hospices in America that focus on dying adults, only a handful of palliative services nationwide, administered in hospitals or at home, exist for children. But, there is yet another option for children. The George Mark Children’s House, in San Leandro, Calif. (near San Francisco) is the first freestanding facility devoted to pediatric respite and end-of-life care for children in the U.S.

Nurses Drive Hospice Care

A nurse, Dame Cicely Saunders has been credited as the founder of the modern hospice movement, according to Betty Davies, RN, PhD, FAAN, professor and chair of the Family Health Care Nursing Department at the University of California San Francisco.

Saunders wanted to make end-of-life care easier for patients. She discovered, however, that in the 1960s, when she came up with the concept, her clout as a nurse in England was not enough. She went into social work to see if that would help, but found she needed a position with more influence.

“She decided that the only way she would make a difference was to go to medical school to become a physician,” says Davies. “This would allow her to put into practice what she wanted to as a nurse, but in the social context of the time.” She persevered in London, and so began the adult hospice movement.

In the late 1960s or early ’70s, Saunders came to the United States to Yale University as a speaker. There, she met the then dean of the University at Yale, Florence Wald. Davies explains that Wald was so impressed with Saunders’ concept that she resigned as Yale’s dean to go to London and study with Saunders for a year to learn about hospice. She came back to the U.S., and in 1973 Wald established the first hospice in the U.S.: The Hospice of Connecticut, affiliated with Yale University, according to Davies.

Yet another nurse, Sister Frances Dominica, a mother superior in an Anglican convent, pioneered end-of-life care but, this time, for children.

Sister Frances Dominica got her idea in the late ’70s and early ’80s, when she offered to tend an ill child for a mother, so that the mother could take some time for herself, according to Davies.

“Sister Frances realized that there probably were other parents who had the need for respite while their children were suffering with a life-limiting condition. So, she raised money to establish the first children’s hospice in the world. It’s called Helen House (named after the little girl), and it’s in Oxford, England. That was the beginning of hospice care for children in 1982,” says Davies.

Davies and a colleague, Brenda Eng, also had a long-standing interest in children with terminal illness. They developed the first freestanding hospice for children in Canada, based on the Helen House model, and opened what they called the Canuck Place in 1995.

The Movement for Children Continues

“When I came to the U.S. five years ago, pediatric palliative care was just beginning,” says Davies. “Through the national hospice organization in 1998, a group of us … established the [Children’s Project on Palliative/Hospice Services, or ChiPPS]. It was an attempt to … begin to advocate for pediatric palliative care in the U.S.”

Other groups spurred the movement toward pediatric palliative and end-of-life care. About half a million children die in the U.S. every year from terminal illness. The need to properly care for them prompted the American Academy of Pediatrics to recommend in 2000 that comprehensive hospice-like treatment, designed to improve the quality of life for children with life-threatening or terminal illnesses, be made widely available.

In 2003, the Institute of Medicine published a special report: “When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families.” It identifies the need for such care and offers recommendations concerning research and education of health professionals, legal and ethical issues, financing, and family-centered care, according to Davies.

And now, there is a call for nursing research on the topic. On February 5, 2004, the National Institute for Nursing Research put forward program announcements for research proposals to be submitted specifically for end-of-life care in children and their families, according to Davies.

Enter George Mark Children’s House: Privately-funded and named after brothers who died early, at ages 16 and 30, the George Mark Children’s House is not licensed or certified as a hospice; rather, it is a congregate living health facility.

“We chose that licensure, which is under Title 22, skilled nursing facilities, because the literal translation is a more homelike environment, with typically a more acute level care patient than a skilled nursing facility,” says Christy Torkildson, RN, PHN, MSN, director, George Mark Children’s House.

The traditional hospice is based on Medicare regulations that focus on adult needs. That model does not consider curative therapies. It’s based on a six-month physician’s prognosis. Patients traditionally forgo curative therapy or intervention and agree to do-not-resuscitate status.

“For children, it is very difficult to give a prognosis of six months or less, and it is almost impossible for most parents to say they will give up any and all curative therapies, especially when they can prolong life — not necessarily provide a cure,” says Torkildson. “The other issue is signing the DNR — to many families, signing that piece of paper means giving up any hope. We don’t ever want to take away the sense of hope.”

Torkildson says the George Mark staff gets involved when a child is diagnosed as being unlikely to survive. The facility offers respite care, and the staff establish relationships with children’s families.

“We’re an alternative to having your child die in the hospital or having your child die at home,” says Torkildson. “Our focus is life. Our absolute focus is on helping these families live and helping them enjoy what time they have left. Pain and symptom management is a big part of that. [Our nurses also help] families, making sure that they are educated, that they know what their options are, supporting them in what their goals and decisions are, facilitating those and using their assessment skills to make sure that the child’s pain and symptoms are well managed. It takes a village. The interdisciplinary team is critical.”

According to Annie Berlin, director of communications and individual giving at George Mark Children’s House, that interdisciplinary team includes a psychosocial manager, spiritual care coordinator, child life therapist and volunteers.

The George Mark Children’s House cost $21 million to build, and it spends about $1,400 a day on each child. Funding is a challenge, according to Berlin, who says there is “no real reimbursement structure.”

Few third party insurers cover the service; so for most, George Mark uses a flat fee and sliding scale.

Of the first five patients, three were not charged.

What Does It Take to Work in This Setting?

Torkildson says one of the biggest things nurses learn working at George Mark Children’s House is how to be and not to always do.

“We came into this profession because we want to take care of people. We’re a very caring group overall … . Sometimes we need to take that backseat and let the child and family take the lead,” she says.

Nurses in this setting, according to Torkildson, need the ability to focus on the child’s and family’s goals instead of the nurse’s.

Torkildson, who has been a hospice nurse, worked in neonatal intensive care, cared for severely ill technology-dependent children, and taught pediatrics and high risk obstetrics, recommends that nurses coming into the setting first gain hospital experience. After they get basic skills, they should seek work in a hospice or palliative care setting — even if they need to volunteer at first. That way, nurses can better determine if they’re really cut out for the type of work, she says.

“It’s definitely something that is not for everybody. I found it very difficult to work in geriatrics and found myself really enjoying and loving my work in pediatrics and OB,” says Torkildson. “Everybody has a niche.”

“From my own experience, it’s an opportunity to really make a difference in the lives of families with children at a point in time when they really are facing the worst possible crisis that the family can imagine,” Davies says.

Davies says pediatric palliative care or hospice nursing offers great variation and challenge. Nurses not only care for children who need a lot of physical care, they also meet the psychosocial and emotional needs of parents and siblings. Nurses in the setting talk with families about what it’s like to have a sick child. They introduce them to other families for mutual support and educate parents and siblings about their loved one’s situations. Nurses address tough questions, including “What will they be like when Johnny dies?”

At the same time, these nurses work with families wanting to enter the facility, answer questions from those who might be caring for a child at home or in the bereavement stage, and coordinate care with home care agencies.

“You have to really like children and have a desire and capability of working with children and families. Providing care to families is much more complex than providing care to children,” says Davies. “People who should not [go in this field] are people who have great deal of difficulty dealing with death and have personal experiences with death that they haven’t quite resolved.”

The United States doesn’t like the fact that children die, Torkildson says. “It has taken us a while to recognize that children do die, and we don’t do a very good job of meeting the needs of children and families. We’re part of an industry movement in palliative care.”

Nurses can learn more from the National Hospice and Palliative Care Organization , through ChiPPs, or by visiting the George Mark website.

Lisette Hilton is a freelance writer. To comment on this story, send e-mail to editorca@nurseweek.com.