http://www.sltrib.com/10172002/thursday/7685.htm
Researcher Decries End-of-Life Crisis
Thursday,
October 17, 2002
BY
TROY GOODMAN
THE SALT LAKE TRIBUNE
A quiet epidemic of allowing the dying and terminally ill to
suffer physical and emotional neglect has to stop, according to the end-of-life
coalition Rallying Points.
The group, which grew from a Robert Wood Johnson Foundation
campaign to improve care of dying patients, held its national meeting this week
in Utah. The conference wrapped up Wednesday at Snowbird.
Montana researcher Ira Byock, who writes about palliative and
hospice care, spoke to participants Tuesday about the culture of denial filling
America's hospitals and nursing homes on how to properly care for dying
patients.
"We really are in a public health crisis," said
Byock, who started a communitywide project in Missoula, Mont., to study ways for
transforming terminal-illness care and retraining the medical staffs who deliver
it. He talked to Tuesday's crowd about the challenges of pain management,
inconsistent respect for "last acts" decisions on medical care and the
frequent breakdown in doctor-patient-family communication.
He highlighted findings of a special St. Louis Post-Dispatch
weeklong series, which began Sunday, that show hundreds of elderly patients in
U.S. nursing homes are dying from simple neglect. The cruel acts -- which the
newspaper reported are going undetected by health inspectors, medical examiners
or prosecutors -- were traced to caregivers on whom the elderly relied for food
and drink and to turn them in their beds to stop painful sores.
The American Health Care Association, the lobbying group for
most nursing homes, said Monday the Post-Dispatch series unfairly included
deaths from neglect with deaths from natural causes.
Byock said claims of unfairness, to which doctors and
hospitals often resort, miss the point. His Missoula Demonstration Project
pushes local hospitals, nursing homes and home-health providers to work with
doctors, ER staffs, religious leaders and the general public to increase
patients' chance of a dignified death without demonizing doctors and caregivers.
"The issues of illness, disability, dying, death and
grieving are larger than health care. . . . They require a community
response," Byock said.
The Rallying Points group hopes to address many of the
existing gaps in services and support by providing organization skills and
funding to local and regional coalitions.
Now more than a year old, the group uses its benefactor
agency, the Robert Wood Johnson Foundation, to fund community-based programs
that adopt improving end-of-life care as their mantra.
Kathy Glasmire, of the California Coalition for Compassionate
Care, is using a Rallying Points grant to help organize a half-dozen focus-group
meetings around San Francisco, Los Angeles and Sacramento. The goal: Find out
what doctors and educators need to know about the Chinese community's view on
end-of-life care.
"We need to know what messages Chinese Americans respond
to about death, how are they best conveyed to patients and their family and what
are we doing wrong?" Glasmire said.
More information is available at www.rallyingpoints.org.