"To Cure, When Possible...To Relive, Often...To Comfort, Always..."
Palliative Care Program Offers Solace to Children and Families

BY MARK SHWARTZ

FALL 2001 - Few experiences are as devastating as the death of a child. The loss is felt not only by family and friends, but also by doctors, nurses, and other caregivers who worked so hard to keep the child alive.

Psychologist Barbara Sourkes, Ph.D., has been counseling terminally ill children and their families for more than two decades, including the last 13 years at the Montreal Children's Hospital. In September, Sourkes will leave Canada and become the first John A. Kriewall and Elizabeth A. Haehl Director of the new Pediatric Palliative Care Program at Packard.

"I don't know which side of the rainbow I'm on." - 7-year-old child

The work is never easy, Sourkes says, but often inspiring. Take Jonathan, a 6-year-old child who said, "Thank you for giving me aliveness." Sourkes and her colleagues took solace knowing they had done everything they could to ease the pain, fear, and loneliness of his final weeks. "We couldn't give him life, but we could give him ‘aliveness,'" she recalls.

What is palliative care? The term "palliate" means "to ease without curing," and palliative care seeks to enhance quality of life in the face of an ultimately terminal condition, according to a report by the American Academy of Pediatrics (AAP).

Palliative care places the emphasis on providing comfort, relieving pain, and addressing the psychological, social, and spiritual needs of young patients and their families. "The goal is to add life to the child's years, not simply years to the child's life," states the AAP report.

"To talk about successful palliative care may seem paradoxical," observes Sourkes, "but it's a success when the child's physical suffering has been eliminated to the degree humanly possible, and when the child and the family have been able to express their feelings, both positive and negative, and do not feel isolated from one another."

Despite remarkable advances in medical care, the AAP estimates that 53,000 American children die each year.While adult palliative care and hospice programs have become widely available in this country, little attention has been paid to the needs of terminally ill children and their close relatives.

"We're late in this process in the United States," says Harvey Cohen, M.D., Packard's Chief of Staff. "The best programs for children are in England, Australia, and Canada."

Lorry Frankel, M.D., director of the Pediatric Intensive Care Unit and Barbara Sourkes, Ph.D., director of the new Pediatric Palliative Care Program.

Why has pediatric palliative care lagged so far behind? "In general, this country has difficulty dealing with ‘failures' of our therapies. In addition, most children don't die, and so the death of a child is particularly devastating," Cohen explains.

Death is the ultimate loss, so it is not surprising that a terminally ill child may be afraid to discuss it. But experience has taught Sourkes that sick children intuitively know the seriousness of their condition.

"Children have a wisdom of the body. They also pick up on all the cues around them -- the urgency of the treatments, the anguish of the adults," she says.

Sourkes uses a variety of psychotherapeutic techniques to encourage children to express their feelings of anxiety and grief. Some are asked to strike up a "friendship" with a stuffed animal, while others put their feelings in writing or drawings.

"Art techniques help kids express their fears," she says. "Too often they're afraid to upset their parents by talking directly about their concerns."

Care of the entire family, not only the ill child, lies at the heart of successful palliative care, notes Sourkes. "It's a privilege to be invited into a family's most intimate time," she says. "You see people's resilience in thousands of different ways."

Special attention must be paid to the healthy siblings, who often are neglected while their brother or sister receives around-the-clock care. "They live the illness experience with the same intensity as the patient and parents, and deserve our attention during this traumatic period," Sourkes explains.

In the end, family members should feel that everything possible has been done to improve quality of life, whether the child lives for a few hours or a few years.

"Parents shouldn't feel left out or inadequate.When their child dies, they should be able to say, ‘We did the best we could for him or her,'" Sourkes says.

Palliative care does not end when the child dies. Bereavement follow-up is essential in helping the survivors deal with the absence created by loss, says Sourkes. That's true for everyone whose life was touched by the child -- family, friends, as well as professional caregivers.

"The staff also needs counseling and institutional support," she says. "They're working with children and families whose lives have been stripped to the essence. It affects them also. It has to."

One of the strengths of Packard Children's Hospital is having a highly trained staff capable of caring for the most critically ill and injured patients. Of the more than 2,000 children with life-limiting conditions treated at Packard each year, between 150 to 200 will die -- either at home or in the Hospital. Many of those deaths occur in the Pediatric Intensive Care Unit (PICU), where the Palliative Care Program will be located.

"It's tragic when I lose a patient. It eats at me," says Lorry Frankel, M.D., director of the PICU. "In medical school we're taught, ‘Make everybody well!' But there are patients who come in with severe problems we cannot correct. We don't really know how long these children will live."

He points out that pediatric physicians must learn a difficult lesson: Success does not always mean survival. "There is probably no good way to leave the planet, but at a certain point, difficult procedures such as ventilators and infusion pumps simply aren't best for the child," Frankel says. "Success can be a painless, dignified exit from Earth."

"You can't do palliative care solo," notes Sourkes. Palliative care requires commitment and continuity by a coordinated team including doctors, nurses, psychologists, social workers, clergy, and child-life specialists.

The program already has the enthusiastic support of Wilma Reichard, director of chaplaincy services at Packard. "People often want us to be with a child who is dying, or pray with them after a child has died," says Reichard. "With some families, we provide support as they make the difficult transition toward death."

Last year, Packard conducted a survey of 68 bereaved family members whose children died under the care of Hospital staff.While most felt positive about their interactions with doctors and nurses, some described breakdowns in communication caused by a variety of factors, including lack of coordinated medical care and language barriers.

Another survey of 446 staff members -- including 158 physicians and 191 nurses -- revealed concern among caregivers as well. "Our study showed that about half of our faculty and staff feel uncomfortable with issues of death," says Cohen. "That's why we've made education an important component of palliative care. As of July, pediatric interns are offered six hour-long seminars to teach them how to care better for children who are dying."

The six-week course should be available to the entire Hospital staff within two years. "Only a handful of American medical schools offer such training," Cohen adds.

"We want the staff to feel confident in dealing with children and their families," says Sourkes. "We'll focus on the importance of listening and of asking family members how they envision this chapter in the child's life.We also talk about hope. Hope changes.What is hope for a family? Perhaps at this stage it's having a child die at home."

Cohen believes that Packard's Pediatric Palliative Care Program could become a model for the rest of the country -- a worthy goal, notes Reichard, and one that's long overdue.

"We're in a world where we can help people survive phenomenal things," says Reichard. "We have an obligation to be as compassionate and as individual in our care as humanly possible. Through palliative care, we honor that obligation."

"Fireflies glow in the dark and show others the way." - 12-year-old child

Children's drawings are excerpts from Armfuls of Time: The Psychological Experience of the Child with a Life-Threatening Illness, by Barbara M. Sourkes, Ph.D., University of Pittsburgh Press, Pittsburgh, 1995.