As the nationwide trend in where terminally ill people die shifts from
hospital to community-based settings, researchers say new clinical skills
and health policies are needed for support and services for people and
their families.
This was the conclusion of an article recently published by Virginia
Tilden, D.N.Sc., dean of the UNMC College of Nursing, Susan Tolle, Ph.D.,
co-investigator, and former co-investigators at the Oregon Health &
Science University in Portland. Their conclusions support a wealth of articles
on the subject, including a 1997 report by the U.S. Institute of Medicine,
Approaching Death: Improving Care at the End of Life, which urged better
attention to the quality of life for dying patients and their families.
Published in the Journal of the American Geriatrics Society, Out-of-Hospital
Death: Advance Care Planning, Decedent Symptoms, and Caregiver Burden,
the article focused on what families experiences were in helping to take
care of the terminally ill. The study was supported by the National Institute
of Nursing Research and The Robert Wood Johnson Foundation.
The team conducted the study in part because of the lack of scientific
information about families experiences of caring for the terminally ill
in community settings. The study contains information of family experiences
as it cares for a terminally-ill family member the last six months of life.
Working from death certificates of those 65 and older who died in the
community from natural causes, the researchers surveyed 1,189 families.
About 2 million Medicare beneficiaries die each year in the U.S., a number
officials estimate will increase with Americas aging population.
Dr. Tilden said the objective was to examine the end-of-life experiences
of older adults dying outside of the hospital setting, and their family
caregivers. They conducted the study in Oregon, where Dr. Tilden served
before joining UNMC. As in most states across the United States,
the vast majority of Oregon Medicare deaths occur in community settings.
She said as the country moves from medically aggressive, and sometimes
unnecessary, treatment to more palliative care for the terminally ill,
more people are dying in community settings such as the home, in nursing
homes or hospice. Palliative care focuses on the management of symptoms
and improving quality of life of a terminally ill person.
Overall, there is a trend toward moving end-of-life care to community
settings, such as home, in-patient hospice, nursing home or assisted living,
Dr. Tilden said. Out-of-hospital death rates are an important indicator
of less aggressive and more palliative treatment at the end of life.
Researchers say one of the major and most startling findings of the
study was the number of families who experienced financial strain. Though
only 1 percent of those surveyed were without Medicare or private health
insurance, the financial burden was high for families.
Our study adds verification that the family shoulders a lot of the
financial burden in the last six months of care in a community-based setting.
You have exhausted families ending up with serious medical bills and out-of-pocket
expenses. Its not satisfactory from the family perspective. The costs
are not what people want, Dr. Tilden said.
In the wealthiest country in the world, two-thirds experience financial
hardship. One-third lost all their savings taking care of their loved one.
If we value taking care of people until they die, we cant ignore how
much care and cost is shouldered by families. At an increasing rate, families
are in that picture, Dr. Tilden said.
Medications account for one of the highest out-of-pocket expenses for
families mostly for pain medications, she said.
According to the Dartmouth Atlas of Health Care 1999, the percentage
of Medicare deaths in the U.S. that occurred out of the hospital ranged
state-to-state from 51.2 percent to 90.1 percent, indicating a wide regional
variation in how and where end-of-life care is managed.
The rate in Nebraska of the terminally ill who die at home versus the
hospital varies from city to city. According to the Dartmouth Atlas Quick
Report for Iowa and Nebraska, the likelihood of a hospitalized death ranged
from 23.9 percent to 35.3 percent in 1999. Dr. Tilden said the Nebraska
statistics reflect what most Americans want.
Surveys show the majority of Americans say they dont want to die hooked
up to machines in a hospital, Dr. Tilden said. They say theyd rather
die in a place thats familiar to them in their home or nursing home.
Of course, theres a time and a place for aggressive medical care if theres
a chance of recovery and getting up and walking out of the hospital.
Another major finding was poor management of some of the most common
distressing symptoms at the end of life, including pain, shortness of breath
and constipation.
Community-based care is good but more steps need to be taken to manage
distressing symptoms and give support to the family. Aggressive management
and early treatment can help prevent and ward off the symptoms, Dr. Tilden
said.
As hard as our health professionals are working, there still is a high level
of unacceptable occurrences of these manageable symptoms. Witnessing a loved
one suffer is difficult for caregivers. We would like
to see clinicians be more aggressive in management of these symptoms,
she said.
Through the study, Dr. Tilden and her colleagues also found many families
arent aware that hospice care is free for Medicare recipients. She said
for various reasons, including some people die before they get into hospice,
there is only a nationwide average of 25 percent hospice use.
The Journal of the American Geriatrics Society is published by the American
Geriatrics Society, a 6,000-member premier professional organization of
health care providers dedicated to improving the health and well-being
of all older adults.