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http://www.nytimes.com/2002/07/26/health/26CHIL.html

Health System Adds to Pain of Losing Child, Panel Says

By WARREN E. LEARY

ASHINGTON, July 25 — One of the most traumatic experiences a family can suffer — the death of a child — is often worsened by ineffective health care that fails to address the physical, emotional or spiritual needs of the patient and family members, a report released today found.

The report, written by a committee of experts from the Institute of Medicine, said that compassionate and reliable care intended to help families prepare for a child's death "has not usually been a priority" for health care providers, researchers or the public.

The committee recommended that health agencies and professionals develop clinical practice guidelines and institutional procedures for palliative care to relieve symptoms and pain for the dying. These guidelines also should cover end-of-life and bereavement care tailored to the needs of children and families.

The study quoted people who hoped their experiences would help improve the treatment of others.

Rosario Avila, whose daughter was born with a severe brain injury but survived for eight years, said, "It was noticeable that when we finally decided to take the inevitable steps that would lead to her death, the medical staff stopped considering her as a priority."

Some parents who lost a child made the point that compassionate health workers who paid attention to the family helped them cope with a difficult situation. Peg Rousar-Thompson said: "Her words concerning his death and the choices I made also comfort me. She said, `You did the right thing.' Such simple words — but what comfort they give me four years later!"

The report from the institute, which is part of the National Academy of Sciences, was commissioned by the National Institutes of Health and several foundations. At its best, care for dying children can help all involved feel that they did everything they could to ease a bad situation, the report said. At worse, poor experiences leave families with painful memories of unnecessary suffering and lifelong regrets about their choices.

Because tens of thousands of children die from illnesses and injury each year in the United States, the committee said, changes are needed throughout the health care system to help families cope with a child's grave illness or injury while making decisions on treatment and negotiating the maze of health insurance, hospital policies and government regulations.

The report said the proportion of all deaths in the United States that were children younger than 5 had dropped from 30 percent in 1900 to 1.4 percent in 1999. But death among the young is not uncommon, with 55,000 children ages 1 to 19 dying in 1999. Half of all childhood death occurs in infancy, and injury is the major cause of death among older children and teenagers, the report said.

Seriously ill children are often treated at centers far from their homes, removing families from their usual sources of emotional support and straining family relationships and finances, the report said. When these children and families return home, particularly to rural areas with few local resources, they could be better supported with improved Internet and telephone consultations and written guidelines and care plans, it said.

The report called for insurers to change their policies to eliminate restrictions on hospice care for children, particularly those that call for parents to choose between continued standard treatment or hospice support for the dying. It also urged Congress to add hospice care for children to the services covered by Medicaid and other public health programs.

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ALL INFORMATION, DATA, AND MATERIAL CONTAINED, PRESENTED, OR PROVIDED HERE IS FOR GENERAL INFORMATION PURPOSES ONLY AND IS NOT TO BE CONSTRUED AS REFLECTING THE KNOWLEDGE OR OPINIONS OF THE PUBLISHER, AND IS NOT TO BE CONSTRUED OR INTENDED AS PROVIDING MEDICAL OR LEGAL ADVICE.  THE DECISION WHETHER OR NOT TO VACCINATE IS AN IMPORTANT AND COMPLEX ISSUE AND SHOULD BE MADE BY YOU, AND YOU ALONE, IN CONSULTATION WITH YOUR HEALTH CARE PROVIDER.