Critical Care Plus: Focus on Dying Children’s Quality of Life, Study Says

Look to palliative care urged

A study has found that terminally ill infants whose families were given special counseling were more likely to die in a peaceful setting and were subjected to fewer invasive procedures than infants with similar terminal conditions during their last 48 hours of life.

The study, published in the September 2001 issue of Pediatrics, is one of the first to look closely at a palliative-care approach for dying newborns and premature infants.

"We don’t always have to aggressively treat something," said Steven Leuthner, MD, of the Medical College of Wisconsin in Milwaukee, the lead author of the study. "We are not talking about doing nothing. We are providing some comfort and therapies to allow you to achieve whatever goals you have reset for yourself and your child for whatever limited amount of time there is left."

The study prompted a joint statement from the American Academy of Pediatrics and the American Pain Society. The two organizations called for a national effort to improve the control of acute pain in infants, children, and adolescents. The joint statement says there are many barriers to treating acute pain in children, including:

  • the myth that children, especially infants, don’t feel pain the way adults do;
  • a lack of assessment and reassessment for pain;
  • fears about side effects of pain medications, including respiratory problems and addiction;
  • the belief by some health care workers that pain builds character in children;

"The AAP and APS feel that most acute pain experienced in medical settings can be prevented or substantially relieved," the joint statement says. "To accomplish this, physicians need to expand their knowledge about pediatric pain management principles, provide a calm environment for painful procedures, use appropriate assessment tools and techniques, anticipate painful experiences, and involve families in creating solutions for their child’s pain."