Study: Women Give Dying Family Care
By LINDA A. JOHNSON
05:00 PM ET 09/22/99
When someone falls terminally ill, it's usually a woman in the family who ends
up providing most of the day-to-day care, including complex nursing tasks such as changing
feeding tubes and giving intravenous medication, researchers say. Their study is the first
in a decade of how terminally ill patients get their care.
It found that the bulk of the care falls to the patient's wife, daughter or
sister. And it found that nearly a quarter of those dying from diseases other than cancer
fail to get all the kinds of care they need. ``This may be a best-case scenario,'' said
Dr. Ezekiel Emanuel, a bioethecist at the National Institutes of Health who directed the
study.
The findings were based on 988 people whose doctors expected them to die within
six months. Among those excluded from the study were people with disabling injuries,
Alzheimer's and chronic illnesses, which generally require more intensive care for much
longer.
``This is a wakeup call for (doctors) to address the needs of care givers,''
said Suzanne Mintz, president of the National Family Caregivers Association.
The researchers interviewed terminal patients and their primary care giver in
six cities and counties, both rural and urban, with varying levels of managed care. The
findings were published in Thursday's issue of the New England Journal of Medicine. Among
the findings:
- About three-quarters of the primary care givers for terminally ill patients
are women relatives.
- Those who are especially poor are more likely to receive help from paid care
givers, such as home health agencies.
- While women are called upon to help dying family members, they typically must
rely on significantly more paid help when they themselves are dying.
- About 15 percent of patients dying from cancer have unmet needs for care,
compared with 23 percent of those dying from other illnesses. These requirements include
rides to medical services, housekeeping, personal care such as bathing and dressing, and
nursing care, sometimes including changing bandages or giving shots.
The researchers speculated that doctors may be more comfortable in considering
patients with cancer as dying, so they are more likely to arrange for health agencies to
help with their care. Emanuel said his study shows the need for better end-of-life care
for the three-quarters of terminally ill people dying of diseases other than cancer.
With hospitals discharging patients sooner and sicker than before, health
professionals must recognize the importance of family care givers and provide training in
the complex tasks expected of them, said Donna Wagner, director of gerontology at Towson
University in Maryland.
