by Laura M. Schmidt
Experts from around the country met this summer to unveil a comprehensive plan of action to deal with the needs of dying children. According to an Institute of Medicine report, When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families, more than 53,000 children in the United States die each year, and another 400,000 have life-threatening illnesses. Yet, despite these high numbers, only 10 percent of the children will receive palliative care, a specialized approach that treats the physical, psychological, emotional, and spiritual needs of the patient.
The IOM found that American health care falls shorts on pediatric palliative care for several reasons. "We need to recognize that physically and emotionally, children are not just small adults. They react differently to drugs and other therapies, and predicting their survival time can be more difficult," said Richard E. Behrman, chairman of the IOM's Committee on Improving Palliative and End-of-Life Care for Children and Their Families and clinical professor of Pediatrics at Stanford University and the University of California-San Francisco. Other barriers include parents, who have the legal decision-making power over their child's treatment, are reluctant to involve their child in discussions about their care as well as the 15 percent of dying children who are uninsured.
But there are signs that the American health care system is beginning to recognize and address the needs of terminally ill children. "This report demonstrates that we have the capacity to overcome the obstacles," Behrman said. The IOM report creating special programs and standards to overcome individual and systematic barriers to care, devoting more research and education to children's issues, and focusing on changes that need to be better addressed.
Special Needs of a Special Population. Providing palliative care for dying children can be a challenge for health care professionals. "End-of-life care is not just about seniors dying in nursing homes," said Liz Sumner, program director for the Children's Program at San Diego Hospice. When dealing with terminally ill children, there are specific developmental issues that must be addressed. In addition, the needs of family members, and in particular the parents, must be addressed. The needs of both the children and their parents must be addressed. "Families need to find the meaning behind their child's death," said Sumner. "They need to create a legacy for the child, and they need to understand what is happening." Although children and adults have very different developmental and emotional needs, some of the practical needs are remarkably similar. Like seriously ill adults, terminally ill children and their families need:
Over the summer, Last Acts, in collaboration with the National Association of Neonatal Nurses and the Association of Pediatric Oncology Nurses, released a blueprint of guidelines for caring for children with life-threatening illness. At the same time, the federal government announced new funding for research on pediatric end-of-life care. "We want to stimulate research on the dying process of children and the bereavement needs of their families," said Patricia A. Grady, director of the National Institute of Nursing Research (NINR). Grady announced that NINR will partner with the National Institute of Mental Health to underwrite $2.5 million in grants for new research into this field.
Read the IOM report online at:
http:// www.nap.edu/books/0309084377/html/index.html
Read the Last Acts blueprint at:http:// www.lastacts.org/statsite/3344la%5Fmrc%5Fnewsrelease.html
At the Children's Hospital and Regional Medical Center in Seattle, a new approach has been developed to overcome financial barriers that can hamper good care. In working with Regence Blue Shield and Premera Blue Cross, the approach involves assigned two case managers--one in the community and one at the insurance company--to co-manage each patient's treatment. In addition, the group uses a flexible administration of benefits so that "we can try to deliver services, regardless of what the benefits packages say," said Ross M. Hays of Children's Hospital's Palliative Care Program. "In tailoring care to the child's individual needs, we have spent the same amount of money, sometimes less."
The Children's Oncology Group, funded by the National Cancer Institute, is creating and evaluating a palliative care model and blending it into clinical trials in cancer research for children. Research is being conducted on specific symptoms, such as fatigue, pain, loss of appetite, and shortness of breath. "Our focus is on outcome measures to prove that palliative care is meaningful for children," said Bruce Himelstein of the Children's Hospital in Wisconsin.
Helping children before they are even born is the focus of the San Diego Hospice Children's Program where, through its innovative Early Intervention Program, families with unborn infants who have a potentially life-threatening condition and may die soon after birth, a continuum of care is provided before, during, and after the birth and death of the baby.
Children's Hospice International has developed the Program for All-Inclusive Care for Children and Their Families (PACC). This program is a model of care for children from the time of the initial diagnosis--when there is hope for a cure--through to bereavement if a cure is not attained. Offered in several States, including Colorado, Florida, Kentucky, New York, Utah, and Virginia, PACC provides curative and palliative services to children as well as services such as counseling and respite care to family members.
The National Hospice and Palliative Care Organization has introduced its Children's International Projects on Palliative/Hospice Services, which produces reference materials and offers training to health care professionals.
Laura Schmidt is a Washington- based medical writer who specializes in end-of-life issues. She received a certificate in thanatology from Hood College and will receive her master's degree in thanatology next year.