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U.S.
Urged to Revive Study on Care for the Dying By Todd Zwillich WASHINGTON
(Reuters Health) - A group of experts called on the U.S. government Monday
to revive a bygone national research study that they say could help
improve the care of dying persons. The experts backed an Institute of Medicine
(IOM) report issued earlier this month calling on the government to survey
families of recently deceased individuals in an effort to uncover details
on the quality of their end-of-life care. IOM, an independent but government-funded
research body, has issued several reports over the last five years calling
for widespread reforms to health care for dying persons, including
improvements in doctor training, an overhaul of health care financing and
wider use of hospice programs. Experts said Monday that reviving a study
called the National Mortality Followback Survey could provide much needed
data on how and where 2.4 million Americans die each year. The survey was
last performed by the Centers for Disease Control and Prevention in 1993,
when it concentrated mostly on disease prevention. At that time, researchers used the study to
interview families of recently deceased persons to find out details about
their lives that death certificates could not reveal. Experts now say they
want to use a similar program to find out where dying Americans spend
their last days and what kind of care they did or did not get. "We need to know about where Americans
die, not just where they happened to be at the moment when they took their
last breath," said Dr. June Lunney a RAND Corporation consultant and
lead author of the IOM report. Researchers said that the data could begin to
tell how many Americans have access to hospice care for dying loved ones
and may shed light on whether physicians and hospitals are following
clinical guidelines and regularly using advanced directives. It could help policy makers get a handle on
how prolonged illnesses affect family and government finances, they said. "Young economists are not really that
interested because they don't have data they can work with," said Dr.
Kathleen Foley, an oncologist at the Memorial Sloan-Kettering Cancer
Center in New York who is also director of the Project on Death in
America. "Here I am making projections based in
1993 (data). I should have 2000 data in my hand," said Brenda
Spillman, a senior researcher at the Urban Institute, a Washington-based
think tank. Some researchers expressed concern that even
if Congress decides to fund a new version of the National Mortality
Followback Survey, the effort could be hampered by budget constraints
requiring different federal agencies to fund the study together. Instead, they pushed for a single agency like
the National Institutes of Health to take sole responsibility for the
study. Copyright
© 2002 Global Action on Aging
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