PROFESSIONPediatric end-of-life care found lackingExperts and advocates call for research and coordination of palliative care for children.By Andis Robeznieks, amednews staff. Aug. 19, 2002. Communicating bad medical news is never easy. And when the bad news involves children, sometimes even the most eloquent medical professionals are at a loss for words. Perhaps the most profound evidence of this is a 1997 survey cited in a new Institute of Medicine report "When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families." In a survey of 122 emergency physicians, more than two-thirds admitted to prolonging resuscitation efforts in order to delay telling parents their child had died, according to researchers at the University of Illinois at Chicago. Poor communication is just one problem cited in the IOM report. It describes how the circumstances behind the nearly 50,000 children who die each year in the United States are often compounded by "needless pain and anxiety." Other problems highlighted in the report include the difficulties in negotiating "this country's fragmented health and social service systems" while engaging in "a constant battle" with health plans that are said to favor invasive procedures, discourage interdisciplinary care and undervalue palliative services. "It is hard to imagine a situation that has a greater imperative for humane caregiving, yet, far too often today, it is not provided," wrote pediatrician Richard E. Behrman, MD, in the report's preface. "It is time to correct this situation. We hope this report will serve as a call to action."
Two-thirds of emergency doctors prolong resuscitation efforts in pediatric cases.
The call is not only being made by the parents of dying children, but also by the doctors who treat them. The report cites a 1998 study in which 100% of residents, 90% of attending physicians and 83% of fellows surveyed at one institution said they wanted more support in dealing with death. The report outlines how the care and support for children and their families often falls short of their physical, emotional and spiritual needs. Many suggestions for improvement are provided in the report, including recommendations that:
Medicine with a heartPiggybacking on the IOM report, Last Acts, a coalition of palliative care advocacy groups, issued its own plan for improving care for children with advanced illnesses. (The group favors the use of the terms "advanced illness" or "seriously ill or injured" to "dying" as more accurately describing these children who can live for months and years before succumbing to their disease or injury.) "We are in need of medicine with a heart," said Dr. Behrman, chair of the IOM report committee, at the Last Acts news conference on July 30. The Last Acts blueprint calls for respecting the choices of patients and their families; relieving pain and symptoms such as fatigue and emotional distress; recognizing such family needs as respite care and baby-sitting for siblings; and improving palliative care through research, education and sharing of innovation and best practices.
50,000 American children die each year.
According to Last Acts, the use of palliative care for dying adults is becoming more widespread, but it is still being underutilized for children -- often because health plans may see it as conflicting with cure-oriented care. "If you go in the hospice room, you have to promise to die within six months," said Ross Hays, MD, director of the palliative care program at Children's Hospital and Regional Medical Center in Seattle. That sort of harshness, however, may soon become a relic of the past. Dr. Hays noted how the quality-of-life enhancing treatments his department offers are now fully supported by the area's two major insurers, Premera Blue Cross and Regence BlueShield. What they need, when they need itIn presenting Last Acts' goals, Dr. Hays said palliative care is "giving children what they need, when they need it." Lizabeth H. Sumner, RN, director of the San Diego Hospice Children's Program, defined palliative care as the prevention and relief of physical, emotional and spiritual suffering. "End-of-life care is not just about seniors dying in nursing homes," she said. Citing cases of pregnant women who know their babies will die soon after birth, Sumner noted palliative care should begin immediately following a terminal diagnosis -- "whenever that diagnosis takes place." Joanne Hilden, MD, chair of the department of pediatric hematology/oncology at the Children's Hospital at The Cleveland Clinic, suggested putting "care coordinators" in children's cancer wards to help families and medical professionals navigate the maze of responsibilities, regulations and paperwork created under stressful and complex situations. The implementation at the Cleveland Clinic has improved continuity by putting someone "right in the middle of the system" to give information and direction, Dr. Hilden said. She also called attention to the need for more pain intervention research for pediatric cancer and cystic fibrosis. Bruce Himelstein, MD, associate professor of pediatrics at the Medical College of Wisconsin, Milwaukee, noted fatigue is the most common symptom of children receiving end-of-life care, but he said there is little knowledge of how to treat or measure it. He cited the need for research to find interventions for treating loss of appetite and shortness of breath. ADDITIONAL INFORMATION:The right wordsHere are tips from experts for communicating with the family of a dying child:
WeblinkIOM report, "When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families" (http://www.nap.edu/books/0309084377/html/) Last Acts' Five-Point Plan for Care of Dying Children Article, "The Doctor is in: What to do if a child dies suddenly?" Journal of Children's Memorial Hospital Chicago, Fall 2000 (http://www.childsdoc.org/fall2000/docisin.asp) Copyright 2002 American Medical Association. All rights reserved.
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