by Linnae Hutchison,
Catherine Hawes, and Lisa Williams
· Access to quality health
services was identified as the top ranking rural health priority in a national
survey of state and local rural health leaders and stakeholders.1
· By the year 2030, the
elderly population will double. One-fifth of the
· Approximately 75 percent
of those over 65 suffer from at least one chronic illness.3
· Nearly 22 percent of the
nation’s elderly reside in rural areas.4
· Rural elderly represent
a larger proportion of the rural population than the urban population.4
· The elderly in rural
areas have access to fewer and a narrower range of long-term care services.5, 6
Goals
and Objectives
Improving
access to comprehensive, high-quality health care services is the goal of the
first Healthy People 2010 focus area—Access to Quality Health Services. Included
in this focus area are objectives relating to improving access to primary care
providers and emergency services, increasing the number of individuals with
health insurance, and improving access to the long-term care continuum and
rehabilitative services.7 This literature review focuses on long-term care and the
unique challenges faced by the rural elderly in accessing these services
including access to nursing homes, assisted living, home health, hospice, and
home and community-based services.
The
following Healthy People 2010 objective drives this discussion:
· 1-15. Increase the proportion
of persons with long-term care needs who have access to the continuum of
long-term care services.7
Identified
by People Living in Rural Areas as a high priority health issue for them
Improving access to
long-term care and rehabilitation is one of the goals under the Healthy People
2010 Access to Quality Health Services focus area. This area was the top-ranked
rural health priority among state and local rural health leaders in a national
survey.1 Approximately two-thirds of the leaders of state agencies
and associations, rural hospitals, rural health centers/clinics, and local
public health agencies identified access to quality health services as one of
the five top priorities among the 28 Healthy People 2010 focus areas.1
Prevalence
and disparities in rural areas
Access
to long-term care (LTC) and rehabilitation services includes improving access
to those providers, services, and facilities that play a vital role in the
long-term care continuum. While hospitals often serve as the entry point for elderly
into the long-term care system, for the purpose of this discussion, the
long-term care continuum includes those services outside the acute hospital
setting. These services may be classified as residential (e.g., assisted
living, nursing homes) and non-residential (e.g., home health, hospice, and
home and community-based services).8 In addition, the role of informal care providers (e.g., spouses,
children, and friends), who are invaluable in meeting the needs of the elderly,
will be included in this discussion.
An Aging Society
The
United States is poised for what has been described in the literature as a
“gerontological explosion”9 as a confluence of factors will significantly increase the
ranks of the elderly population over the next 50 years. Since 1900, the U.S.
population has experienced a 10-fold increase in the number of those over 65—from
three million (4 percent of the total population) at the turn of the last
century to 35 million (12.4 percent of the total population) in 2000.2, 4 By the year 2030, the population over age 65 will double to
70 million, and one in five individuals will be 65 and older.2
Overall,
Americans are older. The average age of U.S. citizens is 35.3 years, while the
average life expectancy is 77 years—a significant increase from 1900 when the
average life expectancy was 43 years.71, 72 This “graying of America” is attributed to simultaneous
advances in medicine prolonging life, improvements in health, decreasing
fertility rates, and aging of the baby boom generation.11, 12 Baby boomers, identified as those born between 1946 and
1964, currently comprise nearly one-third of the United States population and
will begin to reach retirement age beginning in 2011.11 Between 1990 and 2020, the population age 65–74 is expected
to increase 74 percent compared to only 24 percent for those under 65.11
Given
the increases in life expectancy, it is important to recognize that the 65 plus
age bracket is comprised of smaller subgroups (65–74, 75–85, 85 plus, and
centenarians), each with unique characteristics that influence long-term care
demands. One trend of particular relevance to long-term care and aging services
is the growth in the population termed the “oldest old,” those over age 85. In
2000, there were 4.26 million people over age 85, representing the most rapidly
growing segment of the elderly population and growing 38 percent in the last decade.10,
74 This age group is anticipated to increase
five-fold between 2000 and 2050—growing to 20.8 million, with the largest
growth between 2030 and 2050 coinciding with the baby boom generation turning
85 and over.10 This trend portends
future increased demands on formal and informal providers as persons over 85
are the most likely to need and use long-term care services.56
Other
demographic information is relevant to understanding the long-term care
demands. One observation is the inverse relationship between heterogenity and
advancing age. Those over 65 are disproportionately women, widowed, and
predominantly white—comprising 87 percent of those 65 and older.2, 74 Regional differences also exist. The western
and southern regions of the U.S. exhibit the fastest growth in total population
and also the most rapid growth in the elderly population—growing 20 percent and
16 percent, respectively, between 1990 and 2000.74 Such regional differences may reflect overall population
growth as well as choices of elderly regarding geographic location for
retirement living.
Long-term Care Spending
Long-term
care spending is expected to continue increasing as a result of the growth in
the older population. The Congressional Budget Office projects total long-term care
spending to reach 160.7 billion dollars by 2010 and 207.3 billion dollars by
2020. Assisted living and adult day care are not included in this projection.75 It is estimated that half of all elderly over age 65 will
require some care in a nursing home, and approximately 75 percent will require
home care.56
Approximately
64 percent of long-term care spending for institutional care and home care
(e.g., home and community-based services, personal assistance, and home health)
is from public sources, with Medicaid being the primary funder (27 percent)
followed by Medicare (17 percent).77, 78 The remaining expenses are
covered out-of-pocket (21 percent), by private insurance (10 percent), and by other
private and public sources (5 percent).79 Approximately one quarter of Medicare and Medicaid
expenditures occur in the last year of life.80, 81 In 2003, two-thirds of LTC spending was directed toward
institutional care versus one-third spent on home-care services, including home
and community-based services, personal care, and home health.79 Medicaid, the largest payer of LTC, is available only after
other sources of private funding are exhausted. This spend-down requirement is
a significant concern for those in need of long-term care services, as well as
their families.
Elderly in Rural and Urban Areas
Long-term
care and aging is an important concern for rural areas given the
proportionately larger number of elderly in rural areas than in urban areas
combined with less access to health resources. According to the 2000 census,
12.3 percent of the urban population is over age 65 compared to 12.8 percent of
the rural population.4 Of the nearly 35 million elderly over age 65, 21.6 percent
of this group resides in rural areas.4 Rural elderly are older than urban elderly. Studies have
found age increases as one moves along the continuum from urbanized to rural
areas, with a greater proportion of those over age 65 and those over 75
residing in isolated areas compared to more urban areas.13, 14 Rural areas are also home to a greater
proportion of the oldest old population segment (those over age 85), which is
an age group more likely to need long-term care and aging services, comprising
7.8 percent of the population over age 60 in the nonmetro areas compared to 7.5
percent in metro areas.15, 75 An estimated 50 percent of those over age 85 need personal
assistance with everyday activities (e.g., bathing, meal preparation, and
mobility within the home).74
Profile of the Rural Elderly
The
key predictors of institutionalization are health status, sociodemographic
factors, and the role of social support networks.16-18 Among the indicators used in assessing overall health
status, as well as determining the need for and degree of long-term care
services, are the perception of health, number of medical conditions, cognitive
status, functional status, and the number and severity of activities of daily
living (ADLs) and instrumental activities of daily living (IADL) impairment. Assessing
the degree to which rural and urban elderly differ in health status is complex;
studies comparing the health status of the elderly across different locales
vary not only in the health indicators utilized but also in the definitions of
rural and urban employed. Despite these limitations, a series of national
reports conclude that rural and urban differences exist for some measures of
health, functional, and cognitive status among elderly populations.
Foremost
among these differences is self-reported perception of health. These
assessments, which are tied to objective
indicators of health status such as number of physician visits, illness
presence, and lifestyle choices (e.g., exercise, smoking, etc.), provide
insight into the health of a population group.82 A number of studies have found rural elderly report a lower
or worse perception of health than their urban counterparts.19- 21 Mueller and colleagues found that Medicare beneficiaries
residing in nonmetro areas were more likely to rate their health as fair or
poor and less likely to rate their health as good or excellent than their metro
counterparts.22 Coward and Cutler found the lowest perceived health status
among nonmetro nonfarm elderly (the largest population of rural elderly);
however, the reported perception of health did not decrease with increasing
rurality. Instead, elderly residing in the most rural locales had a slightly
higher perceived health status than the nonmetro nonfarm elderly, although the
perception was still lower than that of metro residents.19 Eggenbeen and Lichter found that rural elders were—in
addition to reporting a lower perceived health status—more likely to report
greater unhappiness.23
Rural
and urban elders also differ in the number of medical conditions and
utilization of preventive services. Data from the Behavior Risk Factor
Surveillance Survey (BRFSS) from 1993–1997 found rural elders had a higher
incidence of obesity and physical inactivity, and they were more likely to
never have smoked; however, if they did smoke, they were more likely to be a
current smoker (i.e., smoked in the last 30 days).83 The same source found rural older women less likely to have
received a mammogram or pap smear, and rural males and females were less likely
to have received a cholesterol check in the last six months.83 Overall, rural elderly are more likely to have chronic
conditions such as arthritis, hypertension, diabetes, and heart disease.24-26
Physical
and cognitive functioning are essential measures in assessing an individual’s
need for long-term care services. Cutler and Coward found that elderly in
nonmetro-nonfarm rural areas had the highest number of medical conditions and
functional limitations of the four groups (central city, noncentral city, non
metropolitan statistical area [nonMSA] nonfarm, and nonMSA farm).19 The same study found residence did not affect the number of
ADLs or IADLs performed with difficulty. A study using 1988 National Survey of
Families and Households data found rural elderly and rural young were more
likely to report lower health status and report greater unhappiness, but there
were no significant residential differences in functional limitations (ADL
limitation) or presence of chronic illnesses and disabilities.23 Braden and Van Nostrand found no significant rural-urban
differences in functional status.21 Though not statistically significant, Schlenker found that rural
residents had a higher number of ADL and IADL impairments.25 Dansky et al. found greater ADL and IADL impairment in
rural elders.27
While
ADL and IADL presence appear similar in rural areas, the response to these limitations
is different. Using data from the National Survey of Self-Care and Aging, one
study found rural elderly more likely than urban to perform functional
activities in the presence of disabilities.28 The author posits that rural elderly perceive aging
differently than their urban counterparts, tending to “normalize the trajectory
of aging” and reporting fewer functional limitations even in the presence of
disabilities.28
Understanding
not only this group’s health but also their socioeconomic status (e.g.,
education and income) is important in predicting utilization of services;
higher education and income are associated with more positive health
self-assessments.29 Rural elderly are poorer than their urban counterparts,
with 21 percent of rural elderly classified as poor compared to 10.1 percent of
the general population age 65 and older.31 Nearly half of nonmetro elders live below 200 percent of
the federal poverty level compared to slightly over one-third of urban
residents over age 65.32 Rural elderly are more likely to own their own homes;
however, the homes may be in poorer condition.30 This group is more likely to rely on Medicaid and Medicare
and less likely to have private pay insurance.84 Rural elderly are also less educated.30 Finally, although it is commonly perceived that rural
elders are more likely to be cared for by family members than their urban
counterparts, the research is mixed on this point.67 Some studies have concluded rural elders are more likely to
receive care from family members; others have found the opposite—rural elders
are not more likely to rely on family members for caregiving.62, 67, 85
Rural-Urban Differences in Utilization of Services
As
the elderly population grows, so do the demands on the acute care and long-term
care systems. One study estimates that 7.3 million people in rural areas need
long-term care services, accounting for one-fifth of those persons needing LTC.86 Meeting the health-care demands for this population may be
especially challenging for rural areas with more limited resources and greater
barriers to providing these services. For the purposes of this review, the
components of the LTC system are analyzed separately under two broad
categories—residential and non-residential providers.
Residential Providers
Assisted Living
Assisted
living has emerged as one of the fastest growing segments of the long-term care
market. For those seniors who are unable to remain in their homes but do not
require the intensive nursing care provided in nursing homes, assisted living
serves as an attractive alternative to more costly institutional care. Nonetheless,
understanding the availability and utilization of these services, as well as
identifying any associated rural-urban disparities, is complicated by
variability in estimates of the actual number of facilities. Hawes and
colleagues point out that this is largely the result of the lack of a national
definition of assisted living and adoption of national licensing standards.33 Estimates may include not only assisted living facilities
(ALFs) but also other services that fall under the broader residential care
category, which include providers such as board and care homes. According to
the National Academy of State Health Policy, 36,399 licensed assisted living
facilities with 910,486 beds were reported by states in 2002—increasing 14.5
percent from 2000 to 2002, although not all states reported.87
Despite
the growth in the assisted living industry, there is limited research on the
breadth, scope, and quality of this industry in rural versus urban areas. Coburn
notes that the “availability and accessibility to assisted living facilities in
rural areas is largely unknown.”34 To bridge this gap, Hawes et al., in a national study of
assisted living in rural areas, found variation in distribution, size, mix of
services and privacy, and cost among rural and urban assisted living
facilities. The report concluded that assisted living is predominantly an
“urban industry,” with roughly 76 percent of ALFs located in metro areas. Rural
and urban ALFs differed in other ways as well, including size; rural ALFs were
40 percent smaller than urban ALFs. Significant differences between locales
were noted in the mix of service and privacy levels offered, with rural ALFs
more likely to offer a combination of low or minimal services and low privacy
compared to urban ALFs, which were more likely to offer a combination of high
service/high privacy.33
While
assisted living is suggested as a less expensive alternative to nursing home
care,35 the cost may be unaffordable to low-income seniors. Hawes
and colleagues found the price of ALF services in rural areas averaged less
than in urban areas among those facilities with multiple rates ($17,000/year
versus $19,500/year, respectively); nonetheless, the cost remains out of range
for many low-income elderly.33 During the same time period (1998), approximately 12.5
percent of seniors in areas outside of metro areas were below 100 percent of
the federal poverty level (FPL) compared to 9.8 percent of those over 65 in
metro areas. The disparity in poverty levels increases to 43.6 percent and 35.3
percent, respectively, at the 200 percent of FPL.88
Coverage
of ALF services through public sources is an important and debated policy
issue. If assisted living is funded through a Medicaid program, then it is an
entitlement. However, if covered by home and community-based services (HCBS)
Medicaid waiver programs, states have flexibility in the catchment area served,
types of services offered, and groups covered although HCBS beneficiaries must
meet the state’s nursing home level of care eligibility criteria.35 Forty-one states have authorization to cover licensed ALF
or board and care facilities through the state Medicaid program, waiver
program, or a combination of both.87 Medicaid does not, however, pay for room and board costs. For
low-income seniors, these costs are borne by supplemental security income (SSI)
payments or state supplements to SSI.87
As
mentioned earlier, a number of types of facilities fall under the broader
heading of non-medical residential care. One such facility—the board and care
home—is similar to the ALF, but it is generally smaller, privately owned, and
often adapted from a single family home.89 Board and care homes offer few on-site medical services and
may or may not be licensed.89 These homes generally provide services to elderly clients
as well as those who have mental or developmental disabilities.90 There is limited information regarding rural-urban
differences in availability of board and care homes.
Nursing Homes
Nursing
homes (NHs) serve as important providers of long-term care services to the
chronically ill and disabled, especially in rural areas where other service
options such as home and community-based care are more limited. Currently,
there are over 17,000 Medicare and Medicaid certified nursing homes in the
United States, with nearly 1.6 million residents or roughly 4 percent of the
elderly population.13, 36 While many services are lacking in rural areas,
nursing homes remain the notable exception. A national study of quality
differences in rural and urban nursing homes found 40 percent of nursing homes
were located in rural areas.13 In 2001, over one-half million nursing home residents
(approximately one-third of all long-stay nursing home residents) were in homes
outside of major metro areas.36 Utilization patterns—measured by the number of nursing home
residents per 1,000 persons over age 75—vary by residence, with the highest rates
found in areas outside of urban locales. For every 1,000 persons over age 75 in
urban areas, there were 82.3 nursing home residents. This is in contrast to 99
residents/1,000 in isolated rural areas; 121.5 residents/1,000 in rural areas
with small towns; and 106.7 residents/1,000 in rural areas with large towns. Small
town, rural areas also had the highest rate of nursing home use, with 12
percent of the population over age 75 in nursing homes in 2000 compared to 8.2
percent in urban areas.13 Nursing homes in rural areas had fewer beds, a larger
percent of homes below the Centers for Medicare and Medicaid Services (CMS)
suggested nurse staffing thresholds, and fewer specialized services such as
Alzheimer’s units.
Rural
and urban nursing home residents differ along a number of dimensions. Rural
nursing home residents are older and more likely to be dependent on Medicaid. They
have lower ADL dependency than their urban counterparts but similar levels of
moderate to severe cognitive impairment.13, 36, 91 Rural homes have a larger proportion of residents diagnosed
with dementia.13 The highest rates of depression without therapy were found
among residents in the most isolated areas.36
The
availability of nursing home beds in rural areas in contrast to shortages in
other LTC options has raised the question of whether nursing home care is being
substituted for other LTC services in rural areas.38, 92 A number of studies have investigated with mixed results
whether rural elderly are at risk of premature institutionalization. An Arizona
study of 282 patients in skilled nursing units found rural elderly at
heightened risk of premature nursing home admission—that is, admitted at a
younger age and with less impairment.93 A Colorado study also found rural residents at higher risk
of premature institutionalization due to a lack of alternatives.94 A study using LSOA (Longitudinal Study of Aging) data found
incontinent elders in rural areas were at higher risk of nursing home
admissions than urban elderly with incontinence; the authors suggest this is
attributable to the lack of HCBS and an increased burden on the informal
caregiver.16 Another study found rural residents had higher nursing home
admissions that could not be explained by differences in sociodemographic,
health, and social support network variables.95
Other
studies, however, found residence was not a predictor of premature
institutionalization. In a 2001 study of rural and urban Nebraskans, rural
residents were not at a heightened risk of premature institutionalization to
nursing homes.96 McConnel and Zetzman, using data from the Longitudinal
Study of Aging, found residential location was unrelated to likelihood of
nursing home admission, physician visit, or hospitalization.92 Additionally, an eight-county study in Florida found few
differences between rural and urban NH admissions.97
Still
other studies have found rural residents at lower risk of institutionalization.
Dwyer, Barton, and Vogel found rural residents at lower risk of NH admission
than urban.98 This study found that the level of impairment and race were
greater predictors in rural areas than rural residence—that is, minorities are
more likely to report functional limitations but less likely to be
institutionalized. The authors suggest this finding may be attributed to more
familial support among minority groups. The discrepancy between studies may be
due to differences in study design, population studied, coding, and other
factors.
In
addition to health status and functional limitations, the role of support
networks is a predictor of NH admission. High levels of loneliness—often as a
result of death of a spouse and isolation from family and friends—contribute to
diminished support networks, which increase the likelihood of NH admission.18 This is important in anticipating NH use given the oldest-old
rural elderly are more likely to live alone.99, 100
While
quality of care in nursing homes is a national issue, few studies have
investigated how quality differs across the rural-urban continuum. Phillips et
al., in a national study of long-stay nursing home resident assessment data,
found significant differences in quality indicators across nursing homes
located in urban, large town, small town, and isolated areas.36 Among 19 indicators of potential quality problems, 10 were
higher in nursing homes located in rural areas (categorized in this study as
large town, small town, and isolated), indicating potentially more quality-of-care
problems in nonurban areas; three indicators were lower in rural areas, and six
indicators were mixed among the three rural categories. The authors also found
significant variation in quality indicators across the 10 regions of the United
States.36
Another
study finds rural-urban differences in nursing home discharge patterns. A Maine
study found rural residents with hip fractures were less likely to be
discharged within the first six months than urban residents.86 The same study also found rural residents were less likely
to be discharged to lower-care facilities.
Finally,
some studies have suggested that nursing homes are a more entrenched part of
rural life and the rural community. Consequently, rural residents may be more
accepting of admission to nursing homes as a long-term care option if they are
no longer able to live alone.101 However, a longitudinal study found rural elderly are twice
as likely as urban elderly to report they would live with family members rather
than move into a NH if they could no longer live alone—a finding conflicting
with the belief there is greater acceptance of nursing homes by rural
residents.101
It
should be noted that one of the two Healthy People 2010 Access to Long-term Care
objectives focuses on decreasing the incidence of decubitus ulcers (bed sores).
The presence of and degree of severity of decubitus ulcers are indicators of
the quality of care for nursing home residents. In a national study of nursing
home quality in rural and urban areas using 2001 Minimum Data Set (MDS) data,
Phillips et al. found the incidence of bed sores decreased with increasing
rurality, with nursing homes in the most isolated areas having the lowest
incidence of bed sores.91
Non-residential Care Providers
Home Health
A
keen sense of independence and self-reliance are characteristics frequently
associated with rural residents. Remaining in one’s home is a vital component
in maintaining this sense of independence. Studies support that consumers, when
faced with the need for chronic care, prefer to remain in their homes to
receive such care.102-104 Home
health (HH) fosters and promotes this independence while providing necessary
medical care in the patients’ homes for those with chronic disease or those recovering
from an acute incident. Medicare, the primary payer of home health services,
allows an unlimited number of visits per year provided the beneficiary remains
eligible for home care services.105
Studies
reveal uniformity along a number of dimensions regarding differences in the
characteristics of rural and urban home health agencies (HHAs) and the clients
they serve. Overall, rural HHAs differ substantially from urban HHAs in
organizational structure as well as provision of services, as summarized below.37 Rural home health agencies are generally:
· smaller than urban
agencies (i.e., provide less than 5,000 visits per year),37
· more sparsely located
with fewer HHAs per square mile and per county compared to urban centers,38
· more likely to be
hospital based,37
· more likely to be not
for profit,37
· more likely to offer a narrower
range of ancillary services (physical therapy, occupational therapy, speech
therapy, and social services),37
· more likely to use
health aides,106 and
· focused on providing
post-acute care.107, 108
The
availability and scope of ancillary HHA services are important in the ability
of HHAs to effectively meet the health care demands of clients. The research
concludes rural HHAs tend to offer fewer of these specialized services. While
70 percent of metro HHAs provide a range of ancillary services, less than 20
percent of nonmetro HHAs offer these services.37
In
addition to HHA-provider differences, there are also differences in the profile
of the rural and urban home health patient. Rural patients are less likely to
be from a racial or ethnic minority. Rural home health patients also tend to be
long-term care patients versus urban beneficiaries who are more likely to be
post-acute-care patients.39 Schlenker found that rural home health patients tended to
have more ADL and IADL disabilities—although the differences were statistically
significant for only one ADL and two IADLs measured, significantly more
intractable pain, more neuro/emotional/behavioral status problems, terminal
conditions, and slightly more chronic conditions (1.98 versus 1.77, a
difference that is not statistically significant) but fewer acute conditions (a
difference that is marginally statistically significant). Associated outcomes
at discharge from home health also differed by locale. Rural residents were
less likely to be discharged with their goals met and more likely to have a
poor prognosis.25
Utilization
of home health services, as measured by number and length of visits per health
episode, is useful in evaluating rural-urban disparities; however, there is
less than unanimity regarding the subject. The mixed results may be attributed
to variation in study design, classification of rural and urban areas, and the
degree of control for other factors known to impact HH utilization.25, 109 A study utilizing 1987 data, found an inverse
relationship between availability of NH beds and use of home health agencies,
visiting nurses associations, ancillary service availability, and higher
reimbursement ceilings.110 Higher HH use was found in those areas
that had fewer NH beds per Medicare enrollee, more visiting nurses
associations, availability of ancillary services, and higher Medicare
reimbursement ceilings. Consequently, HH use was found to be lower in rural
areas.110 A 1997 study found rural beneficiaries, fitting the profile
of long-term care users, had more visits than urban clients.39 A national study, utilizing 1991 and 1992 data, found
residents in completely rural areas
used more HH services and skilled nursing facility (SNF) days but fewer
hospital and physician office visits compared to more urbanized rural areas and
urban areas (Dansky used a five-category rural-urban continuum: large metro,
large metro fringe, medium lesser metro, nonmetro urbanized, and completely
rural).109 Urban residents tended to use less post-acute services
(home health and SNF) but more inpatient and office visits.109 The most remote rural clients were found to average more HH
visits but fewer physician office visits than any of the other four groups. Clients
from completely rural areas were found to receive 3.5 more HH visits than more
nonmetro urbanized areas—a significant difference. Furthermore, of the five
locales, nonmetro urbanized areas had the lowest rates of HH use but the
highest rates of HH worker availability. Dansky suggests that HH may provide a
“safety net” for rural elderly in the most remote places where both formal and
informal care may be lacking.109 McCall et al. found rural residents used a slightly higher
rate of home health services and had more visits/user.25, 111 However, Schlenker et al., in a national study of Medicare-certified
HHAs using a two category rural-urban classification system, found rural
clients used fewer HH services, averaged fewer total visits per patient in a
120-day period, had lower resource consumption, experienced longer lengths of
stay (54.1 days versus 46.7 days in urban), and were more likely to have
services provided by nurse aides. It should be noted that the studies
referenced in the above discussion utilized data collected prior to the
Balanced Budget Act of 1997 (BBA 1997), an act that significantly impacted home
health as well as other health providers. These studies serve as a baseline for
evaluation of the impact of this legislation on rural and urban utilization of
home health services.
The
home health industry grew substantially between 1986 and 1996 in response to
significant increases in the number of beneficiaries as well as number of
visits per beneficiary. Implementation of a hospital prospective payment system
decreased the number of inpatient days and led to earlier discharges and
greater use of home health services.103 Home health providers were reimbursed on a cost-per-visit
basis (up to predetermined limits). During the same time period, Medicare expenditures
grew from $3 billion to $18 billion.103 In an attempt to control soaring costs and promote industry
efficiency, the Balanced Budget Act of 1997 was passed. Passage of BBA 1997
brought a fundamental change to home health reimbursement, shifting the
industry from a cost-based system to an interim-payment system and ultimately
to a permanent prospective-payment system (PPS). Under PPS, services are
reimbursed based on a predetermined cost per episode rather than on a per visit
basis, forcing agencies to strive for greater efficiencies in delivery of care.103 The impact of this change between 1998–2000 was widespread,
as reflected by a 36 percent reduction in HH agencies across the U.S.112
BBA
1997 not only affected reimbursement to HH providers but also to other health
care providers, including hospitals and nursing homes. As mentioned earlier,
rural HHAs are more likely to be hospital based than in urban areas. BBA 1997
cut reimbursements to hospitals for inpatient, outpatient, nursing care, and
home health care.113 Many small hospitals switched to or are in the process of
converting to critical access hospital (CAH) designation (agree to 15 acute
care beds, allow swing beds and acute-care reimbursement at cost) to maintain
cost-based reimbursement.113 In a study of 448 rural hospitals to determine the impact
of BBA 1997, researchers found 13 percent of rural hospitals operating a home
health agency closed this service by 2000, and 14 percent closed their skilled
services. Seventeen percent of surveyed rural hospitals delayed discharge due
to lack of home health services, while
30 percent delayed discharge due to lack of skilled nursing services.113 However, with the exception of one area, the residents had
access to skilled and home health services from another provider in the
community. The Benefits Improvement and Protection Act of 2000 (BIPA 2000)
offset the reductions in payment for these hospital services, increasing
payments by 10 percent. Stensland and Moscovice concluded, as a result of
BIPA’s implementation, that rural hospitals would not decrease HH services.113
Since
implementation of BBA 1997, there has been a decrease in the expenditures for
HH services and the number of agencies providing care. There are more limited
studies on the differential impact on rural areas since implementation of BBA
1997. An analysis of 1997 HH data found one-quarter of rural home health
residents were served by urban-based HHA agencies. This finding is significant
given that many of the agencies that closed as the result of BBA 1997 were
urban, free-standing, for-profit, and located in the South—the same group that
served many rural areas.114
A
1999 General Accounting Office (GAO) report found 14 percent of rural HHAs
closed in the 15 months following full implementation of BBA 1997; however,
interviews in these counties did not reveal concerns regarding access.115, 116 Another study concluded HHAs altered their selection
process to identify patients with less chronic diseases.116, 117 McCall found patient characteristics changed.116 There were fewer patients with a diagnosis of hypertension,
diabetes, and heart disease but a larger percentage of patients with orthopedic
diagnoses. In a study of the post-BBA 1997 impact on HHAs in Pennsylvania, researchers
found an increased need for technical assistance to deal with the added
administrative burden, an increased use of informal care providers and private
pay nurse aid services, a decrease in HH visits (by 42 percent), and increased
financial challenges.118 Another Pennsylvania study found that providers decreased
the number of visits, but the length of the visit increased; slightly over
one-third of HHAs reported decreasing the number of beneficiaries served;
one-half of agencies reported staffing reductions; and over 80 percent of the
reporting HHAs reported a greater amount of care was shifted to the informal
provider.112
A
2004 GAO report examined HHA Medicare cost report data for freestanding HHAs
and concluded Medicare’s PPS reimbursements to urban and rural HHAs
sufficiently covered the costs in providing HHA services. This report, however,
did not include hospital-based HHAs, which play a significant role in providing
care in rural areas.105 A Medicare Payment Advisory Commission (MedPAC)
report in March 2004 found one-quarter of rural home health patients reported
access problems.119
Home and Community-based Services
Coburn
observed that the “landscape of long-term care is changing, forcing increased
reliance on private funding for services, expansion of nonresidential care
alternatives, increasing in-home options, and attempts to integrate care across
the acute and LTC system.”34 Section 1915c of the Social Security Act established the
home and community-based services waiver program as the Medicaid alternative to long-term institutional care. Waiver
programs serve the elderly and those with disabilities. Prior to the waiver
program, only institutional care, personal care, and home health care were covered
Medicaid benefits. The waiver program allows states to offer a wide range of
services, including homemaker/home health
aide services, personal care services, adult day health, habilitation, case
management, respite care, and “other” services (such as home-delivered
meals or transportation services).8, 40 All 50 states offer some form of HCBS; however,
there is variation in the programs offered.8 States may choose to offer a range of services, provided
the programs are necessary to avoid institutionalization and remain “cost
neutral.” In 2000, an estimated 13 million elderly received care in community
settings (board and care homes, adult day care, hospice, group homes, and
private homes); two million received care in institutional settings.120
While
it is generally agreed that rural elderly have access to a narrower range of
and fewer alternatives to HCBS5, 6 and confront greater barriers in accessing care—such as
such as transportation difficulties and provider shortages,6, 41—the degree to which these constraints affect utilization is
complex.41 Rabiner, using national long-term care survey data from the
early 1980s, found that residents in the northeast and those living in
moderately densely populated areas were more predisposed to using some HCBS than those living in remote
areas. Rabiner also found for some services, such as congregate meals, rural
elderly were less likely to utilize those services but not less likely to use
others such as formal in-home care and adult day care and senior centers.121 In a
Perception
of availability and adequacy of HCBS may be important factors in utilization
patterns, particularly in rural areas. In a study of rural and urban
Floridians, perceived inadequacy of service was identified by rural elderly as
the primary reason for not using HCBS. Compared to their urban counterparts,
the rural participants identified more barriers to accessing these services. It
is suggested that the combination of real and perceived barriers partly
explains lower utilization of HCBS found in some studies.41 The barriers identified were lack of awareness of service,
inadequate transportation, and perceptions regarding eligibility standards.122 Another
Organizationally
located under the Administration on Aging, the estimated 661 Area Agencies on
Aging play a vital role in the provision of HCBS, targeting vulnerable
populations including rural, minorities, the poor, and disabled.124 In 1999, it was estimated that one-third of AAA clients
resided in rural areas.124 One study estimates 90 percent of AAAs have rural elderly
in their service area.41, 125 In the absence of other service providers, AAAs partly fill
a service void for many rural areas. AAAs contract with providers to deliver
home and community-based services or, in areas lacking in service providers,
provide a range of services directly. Rural AAAs are twice as likely to provide
services directly than urban AAAs but offer a narrower range of services and
serve a much larger service area, covering more than 3,000 square miles compared
to less than 500 square miles in more urban areas.41, 126 Nonetheless, rural AAAs face many of the same difficulties
faced by rural communities—lack of resources and subsequent inability to offer
a broad range of services. A national study of AAAs found that almost a third
of rural AAAs reported they were unable to provide adult day care, and 18
percent did not provide respite care; this is compared to only 2 and 3 percent,
respectively, of urban AAAs reporting these services were not available.41, 126 Given the role of AAAs in rural areas, increased targeting
of rural populations as well as other vulnerable populations is an important
objective in AAAs performance plan.124
Adult day care and
respite services
are programs under the larger home and community-based services umbrella. Adult
day care, or adult day health services, are designed to address the social and
health needs of individuals at risk for institutionalization.41 Respite services provide needed relief for informal
caregivers, such as family members, and may be provided in-home or facilitated
through an adult day center. Day adult services often target those with
Alzheimer’s Disease. A national study found 20 percent of centers exclusively
target those with Alzheimer’s Disease but also provide needed health services
for those requiring other health needs associated with the frail elderly,
neurological disorders, cardiovascular disorders, respiratory conditions and
other diseases requiring health care assistance such as dressing changes, skin
care, and medication supervision.63, 127
In
assessing level of need for adult day care services, only seven states reported
having their needs met above the 67th percentile. The remaining
states report unmet needs below this level.127 Interactive maps showing state and county levels of need
for day adult services are available at the Robert Wood Johnson website: <http://www.rwjf.org/news/special/adultdayEvolution.jhtml>.
As noted above, these services are less commonly available in rural areas. Even
in those areas providing these services, cultural barriers, such as feelings of
guilt or mistrust of service providers, may prevent use.41 Transportation difficulties may further exacerbate access
difficulties.
Rural-urban
differences also exist in client characteristics and disease diagnoses. A
Respite
care provides a necessary relief for the caregiver and is important in delaying
institutionalization of the family member.43 However, respite care has been found to be the most-often-requested
service but also one of the most underutilized and least available.43 In a study of the impact of providing care for an ill
family member, it was determined that caring for those with brain-related
conditions posed the greatest psychological stress on the family. Financial
burdens further exacerbate family stress.128 A New Jersey study found that use of adult day services is
effective in reducing caregiver stress in families caring for family members
suffering from dementia problems.129
Overall,
the attractiveness of many types of LTC services lies in their ability to
facilitate aging-in-place. This concept has many meanings.130, 131 In its simplest form, it means the ability to remain in
one’s current environment, maintaining independence and control over the
environment across settings.131
Hospice
A
1996 Gallup poll found 90 percent of Americans prefer to receive care in their
homes if diagnosed with a terminal illness.45 Incorporated into Medicare in 1982 as part of the Tax
Equity and Fiscal Responsibility Act, hospice serves as an invaluable component
of the long-term care system for those requiring end-of-life palliative care.47 Between 1992 and 2000, Medicare enrollment in the hospice
benefit increased at an annual rate of 16 percent, with the number of Medicare
decedents who used hospice increasing from 9 percent to 23 percent during this
period.52 Hospice patients typically enter the system one month
before death.45
Hospice
care involves a team-oriented approach to caring for persons with a
life-limiting illness or injury.52 Core beliefs of hospice are that each person should be able
to die pain-free with dignity and that the patient’s family should receive the
necessary support to allow the patient to do so. The care is usually provided
in the patient’s place of residence (i.e., personal home, nursing home, or
assisted-living facility) but can also be provided in the hospital or in a
hospice facility. The hospice team generally consists of the patient,
physician(s), nurses, home care aides, social worker, trained volunteers,
clergy (if desired), counselors, and therapists as needed.132
There
are 2,154 hospices, with the majority in urban areas (1,314) versus 840 in
rural areas, providing over 28 million home care days.46 Hospice utilization, service availability, and organizational
structure varies widely by area of residence. Rural hospices tend to be smaller
and are more likely to be hospital-based, whereas urban hospices are more often
stand-alone. One measure of hospice utilization is the number of hospice deaths
per 100 beneficiaries. Researchers in one study found that the rate of hospice
utilization varied significantly between rural and urban areas, with rural
areas having the lowest rates (22.9 percent in urban areas compared to 15.2
percent in rural areas not adjacent to an urban area).47 While the rate of hospice deaths varied by region, the
researchers pointed out the rate of hospital deaths did not. Low-income
individuals, minorities, rural residents, and the old were less likely to use
hospice services than urban, higher income, and younger individuals.47-53 Nonetheless, a MedPAC report noted a sharp increase in
hospice use among rural decedents, tripling from 6 percent in 1993 to 19
percent in 2000, compared to a doubling among urban decedents from 10 percent
to 25 percent.52
Providing
comfort to those who need end-of-life care requires understanding an
appropriate response to the care needs of the population. There is some
evidence that rural hospices may be more restrictive in medications used to
comfort hospice patients. Bolin et al.
found rural hospice patients were more likely to use anti-depressants and
anti-psychotics but less likely to use anti-anxiety medications compared to
urban, large town, and small town areas.133 Hospice patients in small towns and remote areas were more
likely to report experiencing pain on a daily basis.133
Providing
quality end-of-life care, particularly in rural areas, is complicated by a host
of factors. Providers in rural areas face uniquely rural challenges. Long
travel distances, the demands of a frequent on-call schedule, staff isolation,
and lack of 24-hour pharmacy services are frequently cited problems faced by
rural hospice service providers, which in turn, further exacerbates provider
shortages.45, 134
Finally,
availability of providers may not be the only reason hospice use rates are
lower, albeit growing, in rural areas. In a review of the economics of
end-of-life care, Buntin found studies indicating other factors that may
contribute to underutilization of hospice, although rural versus urban areas
were not specifically compared. Namely, physicians may tend to overestimate a
positive prognosis for patients; patients may misunderstand the course of
treatment; and there may be differences in racial and ethnic groups in
caregiving preferences.135
Informal Care Providers
The
majority of long-term care is provided by the informal network—the family
(spouses and children) and unpaid caregivers.54 An estimated 91 percent of informal caregivers in general
are family members (spouses 25 percent and children 50 percent).54 Fifty percent of those without an informal family network
reside in nursing homes compared to 7 percent of those with a family network.55 Approximately 86 percent of the elderly at highest risk for
nursing home placement (more than three ADL impairments) receive care from
informal care providers.56
Informal
care providers are vital in the long-term care system. The majority of these
caregivers are female and over age 60. Most are retired or do not hold paying
jobs; of those who do hold paying jobs, two-thirds report conflict in providing
care and maintaining employment.56
The
burdens on rural informal caregivers may be especially pronounced. In a study
of the conflicts encountered by informal caregivers in providing care to elders,
using National Survey of Families and Households data, researchers found rural
caregivers worked more hours at their place of employment, in the home, and in
providing care in comparison to urban caregivers. This disparity is attributed
to the lack of formal services in rural areas.44 Given the role played by the informal provider, support and
respite services are needed resources across locales.
Recent
national comparisons of rural-urban differences in utilization of formal and
informal services are scarce. An older study using the Longitudinal National
Long-term Care Survey compares the amount of formal and informal assistance
received for ADLs and IADLs among noninstutionalized disabled adults.57 The study found that residents in areas categorized as open
and farm areas were less likely to receive formal ADL and IADL assistance than
urban residents. At the same time, residents of these areas were more likely to
receive informal assistance with IADLs, such as grocery shopping, meal
preparation, housework, and traveling. There was no difference by residence of
the likelihood of receiving informal assistance with ADLs (e.g., eating,
toileting, getting in and out of bed, walking inside, dressing, and bathing). Other
factors may also play a role, such as preferences, informal support network,
knowledge of services, and housing characteristics.57 The study is uncertain as to the degree to which
availability of services or cultural factors impact utilization of services
(i.e., attitudes, preferences, etc.).
A
commonly held belief is that rural elderly are at an advantage in having
greater access to familial networks.136 However, the research finds this is not the case. Braden
found familial networks were relatively the same, with nonmetro elders as
likely as metro to live alone or with nonfamily members.21 More recent literature suggest rural elderly may experience
greater challenges in accessing familial networks of informal care,
particularly adult children who may live at a greater geographic distance.58
Rural elderly, less able to access care due to out-migration of younger family
members, must rely on other informal caregivers. 93, 137, 138
Impact
of the condition on morbidity and Mortality
The
mental and physical health of the aging population is a key determinant in
estimating the demands on the long-term care system. Rural elders (in this case
defined as those over age 55) have a lower risk of mortality; however, after
age 75, this “protective factor” disappears.60 Rural elders also experience more morbidity than nonrural.59 This may be the result of delayed care; rural elders tend
to seek care when other modes of relief have failed. It is suggested that the
emphasis in rural areas is on the “cure rather than care.”139
While
expanded quantity of life is an
indicator of improvements in health and health technology, the quality of life—the ability to remain
active and engaged—is an essential consideration in choosing, designing,
delivering, and evaluating long-term care services. In a North Carolina study
of the relationship between population density across the five subsections of
the rural-urban continuum and health-related quality of life, as measured by
six indicators, the researchers found that there was a significant decrease in
three quality-of-life factors (the degree of interference from chronic illness,
number of IADLs, and number of depressive symptoms) as population density
increased.140 With the exception of ADLs, this study suggests that urban
elderly experience a higher quality of life than those outside of urban areas.140 This study, as well as others, reinforces that differences
do not always fall along a simple and straightforward rural-urban continuum;
utilizing a “continuous” measure of rurality (i.e., analysis of smaller subsets
of the rural-urban continuum) is necessary to unmask more subtle differences by
population density.140
Barriers
The
need for long-term care services will continue to grow as the ranks of the
elderly increase. Meeting this demand, particularly in rural areas, is
complicated by a host of factors ranging from systemic (e.g., shortages of
providers, scarcity of resources) to socioeconomic, cultural, knowledge, and
geographic barriers (e.g., long travel distances and difficult terrain). Congdon
says the key barriers faced in accessing care in rural areas include distance,
geography, lack of providers, and limited knowledge of resource availability.61
Systemic Barriers
Systemic
barriers include those constraints that impede access to services. One key
barrier is the lack of availability of a broad range of long-term care services
in rural areas and coordination of services. Travis and McCauley point out that
this is the result of a lack of incentives to invest in coordinated long-term care
networks. Specifically, the heavy reliance on state and federal funding
diminishes market incentives to provide these services.63
Provider Shortages
The
shortages of skilled providers coupled with limited community resources further
restricts expansion.63 It is projected that personal and home care assistants will
be the fourth fastest growing profession by 2006, experiencing an
84.7 percent growth rate. However, turnover rates are 70 percent for direct-care
workers. In addition to poor pay (less than $18,000/year), the work is
physically and emotionally demanding. The Bureau of Labor Statistics, in 2000,
estimated there were 1.8 million direct-care workers in long-term care; this is
compared to 5.9 to 7 million informal caregivers providing care to elders over
age 65.120, 141, 142 Overall, the need for LTC providers is projected to rise
precipitously over the next 40 years as baby boomers reach retirement.120 The highest employment projections are in the community-care
setting between 2000 and 2010, growing 5.5 percent annually.120
Cultural Barriers
Travis
and McCauley point out another barrier to investment in long-term care networks
is the preference of elderly to rely on informal caregivers.63 Another
barrier is the tendency of rural residents to only seek formal assistance when
the informal system fails.64 Estes and Swan estimate that 80 percent of home care is
provided by unpaid persons, including family and friends or volunteer agencies.143 A national study by Rabiner et al. found nonmetro elderly
more likely to discount functional limitations, which the author attributes to
attitudes of independence, better health status than their older peer group,
and fear that reporting of limitations could result in institutionalizations.28
Kosloski
et al. analyzed the role of culture in the use of respite services among
patients with Alzheimer’s Disease and their caregivers.144 The study found a positive relationship between respect for
the care recipient and use of respite services. African Americans were found to
express higher levels of affection for the “care receivers.” Likewise, urban
caregivers felt a higher obligation to care and accorded greater respect to
elders.
Socioeconomic Barriers
Unless
the rural elderly are able to qualify for Medicaid or other assistance
programs, clients must utilize their own resources to pay for long-term care
services. Services, such as assisted living, may be financially out of range
for low-income seniors.
Knowledge Barriers
Entry into the long-term care system is often precipitated by a health event such as an accident or fall. Decisions regarding choice of long-term care providers, as well as transitions between providers, are often made in “crisis” mode with little advance planning.