Families Inform
Roadmap
to improve care
for dying
in nursing homes
December 13, 2004--End-of-life
care in nursing homes often results in unnecessary suffering due
mainly to a lack of staff time, training and communication,
according to a new AARP study conducted at Brown Medical School. The
report lists 15 recommendations to improve care, including more
staffing, increased physician presence, additional training and
better reimbursement rates.
Nearly one in four adult Americans
dies in a nursing home, yet basic needs for pain medication,
emotional support, hospice care often go unmet, according to a new
study conducted by Brown Medical School researchers and published by
AARP.
More stories
on Hospice care, usage
Failing to care for dying...Palliative care, including hospice care, is
widely recognized as the best...
HospiceUse up in 2002...
Study shows increasing use of Hospices across
the nation, discusses misconceptions about
Hospices
Rural Hospices receive grants...A
change in the way payments are
determined for hospice care
will results in ... The
overall projected increase for all
hospice providers is $60
million
Families Inform Roadmap to
Improve Care for Dying in Nursing Homes...End-of-life
care in nursing homes often results in
unnecessary suffering due mainly to a lack
of staff time, training and communication,
according to a new AARP study conducted at
Brown Medical School...
Hospice helps, but doctors
often
dont recommend it soon enough...The
hospice philosophy of end-of-life care
emphasizes the right to die with dignity and
without pain. The role of hospice is to
provide care to the dying and support for
their families and caregivers...
In the report, experts offer
several recommendations to improve end-of-life care in nursing
homes. One of the most critical: Improve government reimbursement
rates.
"Listening to families' compelling
stories of end-of-life care, it is clear that nursing homes need
more staff and better training for that staff," said Terrie Wetle,
associate dean of medicine for public health and public policy and
professor of community health at Brown Medical School.
"Workers also need to be better
paid," Wetle said. "Even at the best facilities, aides are
frequently offered wages that are about what they'd make at
McDonald's. But many homes simply don't have the money to provide
the level of care and support that the dying need."
The report was published by the
AARP Public Policy Institute, which fosters research and analysis on
policy issues of importance to mid-life and older Americans. With 22
percent of all U.S. deaths taking place in nursing homes, and with
scant research on their experiences, AARP commissioned members of
Brown's Center for Gerontology and Health Care Research to gather
and analyze data.
"This research represents a rare
collaboration of a large-scale survey that documented the extent of
problems in providing end-of-life care in nursing homes and in-depth
interviews in which surviving family members movingly describe the
problems they faced," said John Rother, AARP director of public
policy and strategy. "Their stories make a powerful case for
changing the way we provide care at the end of life in nursing homes
and other care facilities."
The research team included Wetle,
Joan Teno, Renee Shield, Lisa Welch and Susan Miller, who conduct
research in Brown's Center for Gerontology and Healthcare Research.
To carry out the study, they drew
upon a sample of 1,578 people from a previous Brown study of U.S.
nursing home deaths funded by the Robert Wood Johnson Foundation.
From that sample, 54 people who had a loved one die in a nursing
home were interviewed. Relatives were asked about their loved ones'
care experiences. Comments were recorded, transcribed and analyzed.
One fundamental finding:
Appropriate care often isn't provided because staffers simply don't
recognize that a patient is dying. Researchers noted that symptoms
of terminal illness are often difficult to identify and illness
trajectories hard to predict, resulting in additional care-giving
burdens, late decisions about hospice care, and unnecessary
transfers to other facilities. The team also found that dying
residents were subjected to unneeded tests or treatments for
example, a comatose resident was restrained in a wheelchair and put
in whirlpool bath.
The team heard other consistent
themes: Doctors that were "missing in action"; aides that were
overworked and under-trained; care that was task-focused rather than
person-centered; hospice referrals that were made too late or not at
all; and, due to a lack of trust, family members who became vigilant
advocates for their spouses, parents or grandparents.
"People felt that they had to be
assertive to make sure that their loved one ate, had their bedding
changed, were brought to the bathroom or received the right
medication," said Shield, a clinical associate professor of
community health. "Family members shouldn't have to have an
adversarial relationship with staff members for basic care."
Family members also made positive
comments about care, praising attentive aides or compassionate
gestures, despite the often inadequate supplies, wages and staffing.
"Many people said that nursing homes were better places to die than
hospitals," said Miller. "Residents were known by name. The setting
is comfortable."
To improve end-of-life care in
nursing homes, the team made 15 recommendations, including:
improve
training for nursing home aides, nurses and administrators,
including skills in identifying and managing symptoms and
communicating with families;
improve
physician training, including giving medical residents
experience in following patients as they leave the hospital to
enter a nursing home;
increase
reimbursements to nursing homes to boost staffing levels;
provide
incentives and remove financial disincentives for nursing
homes to contract with Medicare-certified hospices;
include
information about hospice care in the federal Patients' Bill of
Rights.
In the report, experts offer
several recommendations to improve end-of-life care in nursing
homes. One of the most critical: Improve government reimbursement
rates.
"Listening to families' compelling
stories of end-of-life care, it is clear that nursing homes need
more staff and better training for that staff," said Terrie Wetle,
associate dean of medicine for public health and public policy and
professor of community health at Brown Medical School.
"Workers also need to be better
paid," Wetle said. "Even at the best facilities, aides are
frequently offered wages that are about what they'd make at
McDonald's. But many homes simply don't have the money to provide
the level of care and support that the dying need."
The report was published by the
AARP Public Policy Institute, which fosters research and analysis on
policy issues of importance to mid-life and older Americans. With 22
percent of all U.S. deaths taking place in nursing homes, and with
scant research on their experiences, AARP commissioned members of
Brown's Center for Gerontology and Health Care Research to gather
and analyze data.
"This research represents a rare
collaboration of a large-scale survey that documented the extent of
problems in providing end-of-life care in nursing homes and in-depth
interviews in which surviving family members movingly describe the
problems they faced," said John Rother, AARP director of public
policy and strategy. "Their stories make a powerful case for
changing the way we provide care at the end of life in nursing homes
and other care facilities."
The research team included Wetle,
Joan Teno, Renee Shield, Lisa Welch and Susan Miller, who conduct
research in Brown's Center for Gerontology and Healthcare Research.
To carry out the study, they drew
upon a sample of 1,578 people from a previous Brown study of U.S.
nursing home deaths funded by the Robert Wood Johnson Foundation.
From that sample, 54 people who had a loved one die in a nursing
home were interviewed. Relatives were asked about their loved ones'
care experiences. Comments were recorded, transcribed and analyzed.
One fundamental finding:
Appropriate care often isn't provided because staffers simply don't
recognize that a patient is dying. Researchers noted that symptoms
of terminal illness are often difficult to identify and illness
trajectories hard to predict, resulting in additional care-giving
burdens, late decisions about hospice care, and unnecessary
transfers to other facilities. The team also found that dying
residents were subjected to unneeded tests or treatments for
example, a comatose resident was restrained in a wheelchair and put
in whirlpool bath.
The team heard other consistent
themes: Doctors that were "missing in action"; aides that were
overworked and under-trained; care that was task-focused rather than
person-centered; hospice referrals that were made too late or not at
all; and, due to a lack of trust, family members who became vigilant
advocates for their spouses, parents or grandparents.
"People felt that they had to be
assertive to make sure that their loved one ate, had their bedding
changed, were brought to the bathroom or received the right
medication," said Shield, a clinical associate professor of
community health. "Family members shouldn't have to have an
adversarial relationship with staff members for basic care."
Family members also made positive
comments about care, praising attentive aides or compassionate
gestures, despite the often inadequate supplies, wages and staffing.
"Many people said that nursing homes were better places to die than
hospitals," said Miller. "Residents were known by name. The setting
is comfortable."
To improve end-of-life care in
nursing homes, the team made 15 recommendations, including:
improve
training for nursing home aides, nurses and administrators,
including skills in identifying and managing symptoms and
communicating with families;
improve
physician training, including giving medical residents
experience in following patients as they leave the hospital to
enter a nursing home;
increase
reimbursements to nursing homes to boost staffing levels;
provide
incentives and remove financial disincentives for nursing
homes to contract with Medicare-certified hospices;
include
information about hospice care in the federal Patients' Bill of
Rights.
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