[tri-med] FYI - Comfort Care Urged For Dying Kids

Comfort Care Urged For Dying Kids
July 26, 2002
WASHINGTON (AP) -- Caring for a dying child can drain a family emotionally
long before the end, yet few doctors or hospital staff are taught ways to
help ease the burden.

"We are in need of medicine with a heart," said parent Salvador Avila,
quoted in a new Institute of Medicine report released Thursday.

Said a second parent, Deborah Dokken, about her daughter's death: "I was
scared and lonely, standing outside, unable to be with her. No one had time
to tell me what was happening."

"Since birth (our son's) medical needs have increased and his health has
deteriorated. Our goal has been to try and provide him with the best quality
of life he could have. We live every day not knowing when will be our son's
last," added parent Tina Heyl-Martineau.

The study recommends improvements in training and methods to comfort both
the terminally ill child and the immediate family.

Lawrence A. McAndrews, president of the National Association of Children's
Hospitals and Related Institutions, said he welcomed the report as well as
government and private efforts to make services more available to people who
need them.

"There is no task more difficult in a children's hospital than caring for
children who are dying," McAndrews said. "We know that these children cannot
just be treated medically - the whole child, and the whole family, must
receive services that have psychological, spiritual and cultural
dimensions."

In 1999, people under the age of 20 accounted for about 55,000 deaths,
roughly 2 percent of all deaths in the country, even though that age group
made up 29 percent of the population. In 1900, some 30 percent of deaths
involved children.

The causes of death have also changed, with accidents the main cause now,
compared with infectious disease in 1900.

Death in childhood now often involves children suffering from unusual
diseases seldom seen in their hometowns.

That means seriously ill children and their families often have to travel
far from home for treatment, removing them from the usual sources of
emotional support and straining family relationships and finances, the
report said.

The study suggests that pediatricians, hospitals and hospices to work
together with other agencies to develop better procedures for comfort, or
palliative, care and bereavement care for the children and their families.

The recommendations mirror many of those made two years ago by the American
Academy of Pediatrics, which also stressed the need for palliative care for
dying children.

Among the recommendations from the institute - a branch of the National
Academy of Sciences - are providing complete and understandable information
about the child's outlook and care options.

The report urges medical professionals to have continuing discussions with
parents about their preferences for care and to offer effective and timely
treatment for physical and psychological symptoms.

Insurers should change their policies to eliminate restrictions on hospice
care for children, the report said. It also urged Congress to add hospice
care to services in Medicaid and other public programs for children.

The National Academy of Science is an independent organization chartered by
Congress to provide advice to the government on scientific issues.

Copyright 2002 The Associated Press. All rights reserved.

http://www.intelihealth.com/IH/ihtIH/EMIHC000/333/333/352968.html

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