September 15th, 2010
02:10 PM ET
Adults facing serious or terminal illnesses often ask themselves "Why me?" But it's the rare child who has this reaction, says Dr. Sarah Friebert of Akron Children’s Hospital in Akron, Ohio.
"The older we get, the more entitled we feel ... we sort of expect that we're going to live to be 100 or we’re going to be rich or we’re going to be this or we’re going to be that," says Friebert. "Kids don’t have that sense of entitlement; they sort of live in the present more than we do."
Friebert works with dying and seriously ill children as the director of pediatric palliative care at Akron Children’s. She finds that kids have a particular courage and resilience when it comes to facing the inevitable.
"Most children are very aware of what's going to happen with them," and often understand this faster than the adults in their lives, says Friebert, who attended the National Hospice and Palliative Care Organization convention in Atlanta, Georgia, this week.
Her program aims to reduce the suffering of these children and their families through an approach that includes pain management, psychological counseling, spiritual guidance, and education about navigating the health care system. The program visits seriously ill children in their homes, advocates on behalf of them at school and addresses other quality of life issues.
Palliative care does not mean giving up on curative treatments, she said. Instead, it can be a supplement to other therapies to help families cope with difficult situations. Friebert's philosophy is, "Let’s hope for the best and prepare for the worst."
"We usually try to help families allow children to express their needs, have their goals met, and really have a sense that their life has had meaning, and that they have made a contribution," she said.
Until recently, terminally ill children were only eligible for Medicaid to cover hospice care if their parents agreed to not pursue cure-directed therapy. This year's health care legislation permanently changes that, so parents do not have to choose between hospice and conventional medical therapies. Friebert has not yet seen the effects of this new legislation, but it is being enacted by the individual states, and she is working with the state of Ohio on these issues.
But there is still no coverage for children who are not terminally ill, Friebert said. Some kids who come to Friebert's program have serious conditions that may be managed over many years as chronic illnesses. These include cystic fibrosis, complex congenital heart disease, severe neurological impairments, genetic disorders, and chromosome disorders.
More children's hospitals in the United States are looking for ways to develop these programs, Friebert said. She estimates that between 40 and 70 percent of these institutions have some form of pediatric palliative care initiative.
Financial issues discourage many hospitals from following suit, she said. There is also resistance to the idea of children dying - and hospitals don't necessarily want to create a program around the facts that young patients die and miracles don't happen for everyone.
Despite working with dying children on a daily basis, Friebert does not find her job depressing. She went into medicine to alleviate suffering and help people live better, which is the mission of her program.
"I know that I can’t save everybody’s life," she said. "What really matters to me at the end of the day is that these families feel that they’ve done the best job that they can for their child."
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