Watching their child endure the late stages of cancer, one in eight parents considers hastening the child's death, according to a study in Archives of Pediatrics & Adolescent Medicine (2010;164:231-237). Only 9%, though, voice their sentiments, and only half that many actually ask a doctor to carry out the request.
“Parents who considered hastening death were associated with the child experiencing significant suffering at the end of life,” said the study's senior author, Joanne Wolfe, MD, MPH, Director of Pediatric Palliative Care at Dana-Farber Cancer Institute and Children's Hospital, Boston.
The study—first author is Veronica Dussel, MD, MPH, a research fellow at Dana-Farber—was a survey of 141 parents of children who had died of cancer. In a previous study, Dr. Wolfe and colleagues found that 89% of pediatric cancer patients who died at those institutions suffered significantly from at least one symptom in their last month of life.
“Despite the best intentions of oncology teams, they don't have the time to deliver comprehensive care to children facing the end of life,” Dr. Wolfe said.
When physicians provide end-of-life care, children suffer less, noted another pediatric palliative care expert not associated with the study, David Browning, MSW, Director of the Initiative for Pediatric Palliative Care in Newton, MA.
“The worst thing doctors or nurses can say is, ‘There's nothing more we can do for you,’” he said. “Parents and children feel like they're no longer being listened to. Clinicians should instead say, ‘We haven't been able to cure your child, but here's what we can do.’”
Through the efforts of Dr. Wolfe, Browning, and other advocates, most children's hospitals now offer palliative care. Community-based hospices also have expanded their services to include young patients.
“Palliative care is about the whole child and the whole family,” said Devon Dabbs, Executive Director and Co-founder of the California-based Children's Hospice and Palliative Care Coalition. “It's not just about physical pain. It's also about emotional and spiritual pain, stress, and anxiety. [Palliative care] provides them with the best quality of life.”
Pediatric Advanced Care Team
The Pediatric Advanced Care Team Dr. Wolfe established in 1997 for Dana-Farber and Boston Children's is considered a model for palliative care. Team members include doctors, nurses, pain specialists, social workers, and chaplains. Managing disease is a small part of their services. Much of their time is spent counseling parents and even patients' siblings. They also help with such practical concerns as planning home care after a hospital discharge.
Still, the team is enlisted only for about half the children who die at Dana-Farber and Boston Children's. Parents may shy away from palliative care in the mistaken belief that they will have to abandon curative treatment, Dr. Wolfe explained.
In fact, though, pediatric palliative programs have no restrictions on treatment. Many youngsters continue cancer therapy until death. Pediatric programs also welcome patients in early stages of disease, and not just when they have a few months to live. Dr. Wolfe's patients are in the program an average of one year. Some have even survived their cancer.
“Parents are uncomfortable with the terms ‘hospice’ and ‘palliative care’ because they think it means giving up,” said Ann Armstrong-Daily, founding director of the Virginia-based Children's Hospice International. Yet when they do enroll, often in their child's final weeks, “they say, ‘I wish I'd known about you earlier.’”
“Oncologists have some power over how families prepare for a child's death,” Browning said. “If oncologists have a good relationship with the parents, they will listen.”
A 2008 study that Dr. Wolfe led with most of the same team (“Easing of Suffering in Children with Cancer at the End of Life: Is Care Changing?” JCO 2008;26:1717-1723) found that children with cancer who had palliative care suffered less at the end of life compared with a comparable group who did not have palliative care. Parents reported fewer hospital deaths and less pain at the end of life than among children who died of cancer without advanced-care planning. The parents also felt better prepared for their child's final month and death.
“Our research shows better outcomes associated with the opportunity to plan where a child will be cared for and die,” Dr. Wolfe said. “There's a lower incidence of suffering from anxiety and less pain at the end of life.”
Earlier is Better
The sooner planning starts, the better, Armstrong-Daily emphasized. She encourages oncologists to refer families to advanced-care planning services as soon as they diagnose cancer.
“The time of diagnosis is a time of crisis,” she said. “A cloud of ‘what if’ hangs over the parents' and child's heads.”
What Goes Unsaid
Much of the emotional pain in young patients and their parents comes from what goes unsaid. Anthropologist Myra Bluebond-Langer, PhD, of Rutgers University, spent 30 years studying the sentiments of dying children. She learned that young patients often know far more about their prognosis than their parents imagine.
“Children are very concerned about what their parents want and what their parents' needs are. They deceive their parents to protect them from their fears.”
Browning also speaks of children agreeing to treatments in an effort to please their parents: “You see kids who might be reluctant to say, ‘I don't want to go on with this’ if their parents do,” he said. “Some kids are more concerned with how their parents will do after [the child] dies than with the fact that they'll die.”
For that reason, children need an impartial ear.
“We need to listen to children,” Bluebond-Langner said. “We need to take their views into account.”
Children as young as seven can make choices about their care. But when it comes to tough end-of-life decisions, Bluebond-Langner cautions, children should have a voice without the onus of choosing alone.
Browning also emphasizes the importance of including children in end-of-life decisions: “The older a child gets, the more involved he should probably be in decisions about care.”
Medicaid Waiver Opens Hospice to Children
Given a choice of where to spend their end of life, most children and their parents prefer home, notes Devon Dabbs, Executive Director and C-Founder of the Children's Hospice and Palliative Care Coalition. Although this requires some planning, it usually can be done with the help of hospice.
“When children are going home, it's important to build a safety net in the community,” she said.
Hospices that rarely serve children might require patients to have no more than an estimated six months to live. They also might expect patients to forgo curative treatment. But that's changing.
Several states have a waiver whereby Medicaid covers hospice care for children even if their life expectancy is longer than six months. The only requirement is that the expectation is that they would die before turning 21. These children also are allowed to continue curative treatment.
Like hospital-based palliative-care programs, community hospices serve a portion of eligible youngsters. Last year, Florida had 1,000 openings for pediatric hospice patients under the Medicaid waiver, but only 700 enrolled. Colorado filled only 66 of its 200 slots.
A Plea for Standards in Pain Management
Although end-of-life planning alone helps ease cancer pain, Dr. Joanne Wolfe emphasized that pediatric pain management still has far to go, attributing the problem to exaggerated worries about addiction and side effects of opioids.
“We need to push the envelope in pain management,” she said. “The best way to intercept suffering is to prevent it.”
She advocates the use of opioids, and in severe cases, palliative sedation. “There needs to be more education and standardization of approach.”
Dr. Wolfe is working to create standardization by sharing Dana-Farber's guidelines for pediatric pain management with any interested clinician. The Initiative for Pediatric Palliative Care also has pain-management guidelines on its website: www.ippcweb.org. Providers also can learn about pediatric advanced-care planning at retreats the organization conducts around the country.
“When we developed our program, there was a sense among the oncologists that we don't need this,” Dr. Wolfe said. “But over the years, I've seen much more openness to learning to care for kids in late stages of disease. Be a partner in the care of these children and their families.”