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Long-Term & Institutional Care

Table of Contents

Author Supplied Abstract…………………………………………………… … .1

Author Supplied Keywords………………………………………………….. 1-2
Overview……………………………………………………………………… … 2
Understanding Long-Term Care……………………………………………. 2-4
Nursing Homes…………………………………………………………......... 4-5
Hospices……………………………………………………………………… 5-6
Applications…………………………………………………………………… ..6-7
Standards of Care……………………………………………………………. 6-7
Terms & Concepts……………………………………………………………… 8-9
Bibliography…………………………………………………………………… 10-11
Suggested Reading…………………………………………………………… 11

Author Supplied Abstract

Long term and institutional care is one of the most important yet one of the most
contentious issues in America today. Long term care is provided to persons with chronic
health care issues. These can be as broad as a medical condition such as multiple sclerosis
to a person with a serious mental health condition (example: paranoid schizophrenia).
More recently, many veterans from the Afghan and Iraq wars are also in need of long
term care and some have been placed in institutional care. Institutions can vary greatly,
they include nursing homes, hospices and other institutional environments. Some of these
are run by the private sector, others by the government and there are also faith-based
services. The primary difference between the two is that long term care is often a
community-based model whereas institutions are a closed environment.

Author Supplied Keywords

Activities of Daily Living

Amyotrophic Lateral Sclerosis
Assisted Living
Continuing Care Retirement Communities
Faith-Based Services
Licensed Practical Nurse
Multiple Sclerosis
Nursing Homes
Palliative Care
Registered Nurse
Retirement Living Communities
Subacute Care

Long-Term & Institutional Care

Social Issues & Public Policy > Long-Term & Institutional Care


Long-term and institutionalized care is a topic which embraces a wide range of issues; the
types of care available, standards of care available, concern for persons who are
vulnerable and/or elderly (possible abuse) and the funding required keeping these
services functioning appropriately. For some people, any mention of the words hospice
and/or palliative care create worrisome images. However, they exist to provide important
services in our communities. Yet, not all people who require care want to go into a
nursing home and feel they can be taken care of more effectively in their own home.
While home care is definitely a viable and important option, one has to take into account
the level of care required and how best to provide that. This requires an assessment of the
community care services available so that family members do not burn out trying to care
for their loved ones.

The various options for long-term care require a strict and constant review. It is
absolutely vital that the nation’s most vulnerable individuals receive professionally
appropriate care. However, there have been concerns both in the past and in the present as
to whether or not the highest of professional standards are being met.

Understanding Long-Term Care

Long-term care is a complex topic because a wide range of people benefit from services
that range from children and young adults who require home care services due to a
chronic condition or disability, to people who are elderly and require at least some level
of care that may be too complicated to provide at home. “Many people with long-term
care needs use a combination of family support and formal long-term care and some will
use formal care exclusively. Formal long-term care services can include home care, adult
day care, assisted living, and nursing home care” (Tumlinson, Woods, & Avalere Health
LLC, 2007, p.2).

Individuals require long-term care for many reasons but it is a misconception to think that
only persons who are elderly require these services. Children who are born with multiple
disabilities, people with severe mental health issues (that is, paranoid schizophrenia),
young adults who acquire a disabling condition such as multiple sclerosis and seniors all
can require some form of long-term care.
The broad range of assistance that constitutes long-term care results in
confusion and disagreement about what long-term care is and how it is
distinct from medical care. Other examples of long-term care can
range from skilled nursing facility care provided post hospitalization to
housing arrangements for healthy seniors and special transportation
services (Tumlinson et al., 2007, p.1).

There is no doubt that most people would rather be in their own environment, but
unfortunately it is not always possible. “…many older people with disabilities simply do
not have the financial resources to obtain the services they need, either in the community
or in long-term care facilities. In some cases, their care options are limited, if available at
all” (“From Isolation to Integration,” 2007, p.13).

The choice to provide long-term care at home can be a difficult one. It is often driven by
a combination of emotional and financial considerations. Many families cannot bear to
place a loved one into a nursing home or other care facility. In addition, the quality
services are very expensive and many families simply do not have the money. Yet, trying
to provide the care at home can often be just as costly. The level of care required is driven
by an assessment of ‘Activities of Daily Living.’ The assessment must be provided by a
home care professional. “The assessment tool allows the nurse care manager
to identify medical, psychological, functional, and social needs of the client. In addition,
the home environment, current health care resource utilization, and support systems are
evaluated” (Phillips, Smith, & Cournoyer, 2004, p.42).

Home care is not always possible even if a family member prefers to stay in their own
environment. It is this assessment which determines whether or not a person can be cared
for in their own home, which will provide that care, the parameters of care and the
standards that must be adhered to. Although it sounds like a simpler option (and less
expensive) the reality is that home care is often financially and emotionally difficult on a
family. An individual may lose income depending on the amount of time they need to be
home (or hiring a home care provider) and the emotional toll can sometimes be extremely
taxing on a family.

The professionals who work in long-term care facilities are also under a great deal of
pressure especially as America’s health care system comes under increasing scrutiny. The
training required to work in long-term care is highly specialized. In addition, the
providers of these services must develop an infrastructure that supports quality level care.
Presently, in America, there is a dire shortage of professionals capable of working in
long-term care facilities. The state of many of the country’s long-term care facilities is a
reason for concern.

[…] many providers maintain that inadequate funding makes it difficult

for them to upgrade their infrastructures and their care practices. In
particular, providers say that they lack the necessary resources to recruit,
train and retain quality staff, especially those direct care workers who
provide day-to-day care to long-term care consumers. These workers are
in short supply, in large part because their demanding jobs don’t offer
adequate salaries, benefits, training or opportunities for advancement
(“From Isolation to Integration,” 2007, p.13).

An option open to persons with the financial means is that of assisted living. These are
private residences in which an individual does not need 24-hour or intensive care but may
need a small level of assistance and they prefer not to be dependent on family members.
The consumers who live in residences like these range from young adults with some form
of paralysis or other disability but are otherwise independent and older adults (with or
without disabilities) who also some form of assistance with their daily tasks such as
cleaning, grocery shopping, medication management and other activities of daily living.
However, these residences are very expensive and Medicaid only offers some form of
reimbursement in 41 states. It can cost up to $36,000 a year to live in such a residence
(Tumlinson et al., 2007)

Another option is Continuing Care Retirement Communities. In these residences there are
nurses on staff and assisted living is available but the majorities of the residents are
independent and live in their own apartments within the community.

Unfortunately, the bottom line in long-term care comes back to finances. Someone must
pay the bills and that is usually the state and federal governments. There are, of course,
private facilities owned and managed by companies and corporations, but the federal
government pays a large portion of long-term care in America. In one year alone (2004),
the federal government paid over $183 billion for long-term care (Tumlinson et al.,
2007). That may sound like a staggering amount, but considering the population of
America is quickly aging, that number is likely to increase a substantial amount.

Nursing Homes

Nursing homes have evolved a great deal since the 1950’s when standards for care were
finally enforced by the Hill-Burton Act. The Act was a necessity since nursing homes
actually had their beginnings in the old poorhouses of the 19th century. The poorhouses
were the beginnings of institutionalized care and a place to send people who literally had
no where else to go (White, 2005). While nursing homes have steadily improved over the
last fifty years, it is clear that the term ‘nursing home’ continues to suffer from the social
stigma of being a rather gloomy and negative environment.

An ongoing problem for nursing homes (as it is for health care in general) is the acute
shortage of qualified nurses (Stoil, 2007). Nursing homes are always in competition with
home health care services, hospices, hospitals and each other for qualified personnel. This
creates a financial problem as well since nurses are in such high demand they can ask for
exceptional salaries and benefits (which they deserve).

A common misconception is that nursing homes are places for the elderly or other
individuals who have become ill as a result of a stroke or other serious condition, and
therefore cannot take care of themselves on an independent basis. Nursing conditions
provide treatment for people on a temporary basis as well. One of their functions is to
provide a place for recovery after serious injuries such as back and surgeries and/or hip
fractures. This is known as subacute care and nursing homes are increasingly serving in
this capacity. “This is supported by the fact that the number of nursing homes with
specialized subacute units for residents requiring short-term recovery after serious
trauma or accident has been increasing in the last 15 years” (Bernstein, et al., 2003, p.55).

The majority of the services provided by nursing homes are for people who have
extremely high level personal needs. Some of the conditions which can lead people to
need long-term care in a nursing home would be multiple sclerosis, amyotrophic lateral
sclerosis, dementia and Alzheimer’s. People with debilitating conditions often have a
high level of complex needs ranging from assistance with daily tasks to regular physical
therapy and constant watch to ensure they do not wander off and endanger themselves.

One of the more recent advances in nursing care is in the ways it has become a form of
‘cooperative care’ with home care services. Since it continues to be true that most people
would prefer to remain at home as long as they can, home care services are often
required. Unfortunately, home health care services and nursing homes became bitter
adversaries during the 1980’s when home health care professionals lobbied to convince
legislators that Medicare costs would go down if more home health care services were
utilized. Unfortunately, their case lost some credibility when certain scandals became
public. “A few high-profile cases were used to Illustrate that home healthcare agencies
could, and did, bill for services not actually delivered or for poor-quality, neglectful care”
(Stoil, 2007, p.12).

More recent legislation may be able to end this battle. There has been a push by the Bush
administration to think of Medicaid as two programs - “…programs—one to reimburse
long-term care, one to reimburse acute care for tow-income Americans—also has the
potential to directly affect both types of long-term care providers” (Stoil, 2007, p.12).


Hospices are quality end of life care. Some hospices are actually private institutions that
provide palliative (end of life) care and there is also hospice care within nursing homes.
Nursing homes also function as a referral service for persons who require
hospice/palliative care. These are extremely difficult services to provide and
professionals who work in hospices require extensive training to work on the highly
sensitive issues related to end of life. Some of the issues include medication use, pain
management, end of life counseling, bereavement counseling (for families and partners),
coping with dying patients, and the most difficult issue of all which is the choice to end
life (by refusing treatment) even though it can be prolonged through technology.

The primary distinction between nursing home care and palliative care offered by
hospices is that the latter focuses on quality for a person’s end of life, while the former
focuses on life-prolonging techniques and technologies. Thus, when a person enters into a
hospice or palliative care, they do so with the firm recognition that they are in the final
stages of life and they do not wish to prolong it any further. Some would suggest it is a
more ‘natural’ approach but others would state it is merely a ‘different’ approach (Keay &
Schonwetter, 1998, p.491).

Although hospice care has been recognized for some time as a positive and appropriate
environment for persons facing end of life, the fact is that the majority of Americans who
die in an institution do so in a nursing home.

Despite the rapid growth in the number of hospice patients served and
the acceptance of hospice as a legitimate healthcare provider for
patients near the end of life, it was estimated that, of 2.4 million
Americans who died in 2000, only one of every four was under
hospice care at the time of death (Chen, Haley, Robinson, &.
Schonwetter, 2003, p.789).

The reality of institutional care is that nursing homes (as noted above) are not equipped,
nor is their staff sufficiently trained to provide quality end of life care. However, research
into hospice care and the reasons why more people decide to enter and/or stay in a
nursing home are still unclear. Recently, the National Hospice Organization published
guidelines to help determine who is appropriate for hospice care and the parameters of
that care. One of the most important criteria is that the individual has been determined to
have less than six months to live ( Keay & Schonwetter, 1998).

To aid individuals who are elderly and dying, there is the Medicaid Hospice Benefit.
While it is limited it provides financial support. For example, persons in a nursing home
can receive visits by hospice personnel (provided that the nursing home has a contract
with the hospice), the medication and technical equipment necessary to make end of life
comfortable for them. Unfortunately, not all nursing homes have a relationship with a
hospice and therefore they cannot provide palliative care with the same skill. “When a
nursing home resident is identified as having a limited life expectancy, it is appropriate to
plan for end-of-life care…Specially trained hospice professionals and volunteers can
provide many services that are beyond those usually offered in nursing homes” ( Keay &
Schonwetter, 1998, p.492).


Standards of Care

In addition to the constant shortage of nurses and other qualified personnel, long term
care services must deal with a high level of scrutiny on their standards of care. Since long
term care is administered by the state, there is an ongoing concern over the lack of quality
in some nursing homes. Research has demonstrated that quality is not uniform across the
states. While consumers certainly benefit from information on quality and improvements
in nursing homes across the nation, the question is whether or not, in the end, consumers
even have a choice as to where they go. “The number of nursing home beds is
tightly controlled in most states in an effort to minimize Medicaid expenditures.
Desirable nursing homes have long waiting lists. Most nursing home patients are
admitted from hospitals” (White, 2005, p.28).

In order to improve and maintain high quality of care in nursing homes and other
institutional settings, there is a definite need to address a wide range of issues. A 2007
report on this subject made a broad range of recommendations. These included: reducing
the stereotypical images people have of long-term care, modernizing the system of long-
term care, attract and hire qualified personnel, improve working conditions, promote
career mobility for long-term care workers, introduce technology that can save time and
empower consumers in care to be more independent and provide financial incentives for
further training and education (“The Long-Term Care Workforce”, 2007).

It is absolutely imperative that the highest standards of care be adhered to in long-term

care services and institutions. Many people in nursing homes and other services (and
even many at home) are vulnerable to the point where they might not even be aware of
who they are or their surroundings. Professionals must have the training necessary not
only to provide quality care but compassionate care. They must be able to deal with the
person and their families, friends and partners. It is often the case that the family is going
through a difficult time and the long-term or end of life care being provided is a crucial
time in their lives as well.

In terms of specific educational standards there are major recommendations that

emanated from the same report (as stated above). Some of these include: improve the
performance of doctors who serve as medical directors in long-term care services,
develop model standards for nursing home administrators, strengthen long-term care
nurse competencies in geriatrics, administration, management and supervision and
reassess scopes of practice of RNs and LPNs working in long-term care settings (“The
Long-Term Care Workforce”, 2007, p.17).

Another means to continue the enforcement of high standards and quality of care is
consumer involvement. Consumers have a strong, collective voice and the ability to
affect legislation. When consumers band together they provide a strong incentive for their
elected representatives to listen. This is especially true in an election year. Families,
partners and friends of consumers who use these services are the most important voices
of all. They are the people legislators need to hear from. Their experiences with the
system are absolutely vital to understanding the ways in which the system does or does
not work and what can be done to improve the situation.


To enter into long-term care is a significant and life-altering decision. It implies that there
are important activities of daily living that we can no longer do for ourselves. However,
there are some individuals who have been in this situation since childhood. In either
situation, the standard of care is absolutely critical. The nation’s most vulnerable people –
persons with disabilities, the elderly and people with terminal illnesses are the people
who are in need of long-term care. Whether these services are provided in the home, a
nursing home, a hospice or other long-term facility, the persons using these services are
extremely vulnerable. Long-term care services are a sensitive issue. There is perhaps no
area more sensitive than providing palliative, or end of life services. It is essential that the
country continues to press for the highest standards in quality of care and the credentials
of the professionals providing this care. Long-term care has evolved a great deal over the
past century and especially over the last half century. This evolution has been for the
better but the system is still in need of improvement.

Terms & Concepts

Activities of Daily Living are the most basic tasks of everyday life and include bathing,
eating, dressing, using the toilet, and transferring from one place to another inside the
house. ADLs include meal preparation, managing money, managing medications, using
the telephone, doing light housework, and shopping for groceries.

Alzheimer’s is a neurological disease that is both progressive and fatal. It effects the
brain and in particular the person’s memory. Although it has no cure, in some cases, it is
becoming manageable to some degree with early diagnosis. It is also known as a form of

Amyotrophic Lateral Sclerosis is often known as “Lou Gherig’s Disease” because it

affected the famous New York Yankee ballplayer of the same name. ALS is a
neurodegenerative disease which affects the motor neurons (the nerve cells in the central
nervous system that control voluntary muscular control). It generally leaves the muscular
system very weak and people who have ALS become wheelchair users. Fortunately, most
people with ALS continue to have cognitive functions. Perhaps the most famous person
living with ALS is the famous physicist, Dr. Stephen Hawking.

Assisted Living is the term used for residences which have emerged since the
independent living movement for persons with disabilities began to have an effect in the
1970’s. Assistive living refers to residences where persons live independently but utilize
personal care givers with some of their activities of daily living such as shopping and
cleaning. People who live in AL residences do not need 24 hour care and do not need the
services of a nurse or doctor in their daily lives.

Continuing Care Retirement Communities is a community of residents who live

together in a complex of units such as apartments, cottages or other residences. There are
both independent and group living arrangements and community care (medical or
assistive care) is centralized in a building within the complex. There may be shops,
dining rooms or other amenities as well.

Dementia is a neurological condition that is identified by a progressive decline in a

person’s cognitive functions. Although it used to be thought of as a function of aging,
doctors and researchers now say this is not true and it is a decline in the brain that is
actually beyond the normal aging process. While Alzheimer’s and Dementia are
sometimes thought to be the same thing, they are not. Alzheimer’s is one form of
Dementia and there are many other forms of dementia. Dementia can also be a result of
another condition such as long-term alcoholism, syphilis and many other diseases.

Faith-Based Services are services that are based on a particular religious or spiritual
belief and the people within those communities donate to and arrange for the upkeep of
the home or institution.

Hospices are either private institutions in and of themselves or exist as part of a larger
institution to provide quality end of life (palliative) care.

Licensed Practical Nurse are lower than a registered nurse and do not undergo the same
level of rigorous training. They must work under the supervision of an RN or a licensed
physician. Although they are lower than RNs, they are higher than Certified Nursing
Assistants. They also work in a wide range of health care settings including hospitals and
nursing homes.

Multiple Sclerosis is a neurological condition that results when they myelin sheath (the
coating around the nerve endings on the spinal cord) begins to deteriorate. This causes
wide spread neurological damage and loss of body functions.

Nursing Homes is a generic name for a broad range of long-term care services, although
they sometimes provide subacute or short-term rehabilitation services. This is usually a
place for individuals who require constant care especially with respect to a significant
portion of their activities of daily living.

Palliative Care is the term for end of life care.

Registered Nurse or an RN is an individual who has completed a specific level of

training to earn the designation of ‘registered nurse’. They work in a wide range of health
care settings including hospitals, nursing homes and hospices. RNs can also be highly
specialized such as emergency nursing, pediatric nursing, palliative nursing, psychiatric
nursing and many other specializations. They are highly valued in the health care system.

Retirement Living Communities this is a very broad term for a wide range of
communities for persons in retirement. They can be for persons of a certain age and a
certain level of physical functioning. They often have an extensive list of amenities such
as pools, clubhouses, golf courses and on-site medical facilities. The residents live in
their own independent apartments.

Subacute Care is generally considered to be short-term care and/or rehabilitation


Bernstein A.B., Hing, E., Moss A. J., Allen K. F., Siller, A.B., & Tiggle R. B. (2003).
Health care in America:Trends in utilization. Hyattsville, Maryland: National
Center for Health Statistics. 2003.. Retrieved July 17, 2008, from:

Chen, H., Haley, W.E., Robinson, B.E., &. Schonwetter, R.S. (2003). Decisions for
hospice care in patients with advanced cancer. Journal of the American Geriatrics
Society, 51(6), 789-797. Retrieved July 17, 2008, from EBSCO online database,
SocINDEX with Full Text.


Hanson, L.C., Sengupta, S., & Slubicki, M. (2005). Access to nursing home hospice:
Perspectives of nursing home and hospice administrators. Journal of Palliative
Medicine, 8(6), 1207-1213. Retrieved July 17, 2008, from EBSCO online
database, SocINDEX with Full Text.

Institute for the Future of Aging Services. (2007). The long-term care workforce:
Can the crisis be fixed? A Report for the National Commission for Quality Long-
Term Care. Retrieved July 17, 2008, from:

Keay, T. J., & Schonwetter, R.S. (1996). Hospice care in the nursing home. American
Family Physician, 57(3), 491-496. Retrieved July 17, 2008, from EBSCO online
database, SocINDEX with Full Text (no persistent link).
National Commission for Quality Long-Term Care. (2007). From isolation to integration.
Retrieved July 17, 2008, from:

Phillips, S.L., Smith, D., Cournoyer, B., & Hillegass, B.E. (2004). Chronic home care: A
health plans experience. Annals of Long-Term Care, 12(4), 41-45. Retrieved July
17, 2008, from:

Stoil, M. (2007). Nursing homes and home care: A shotgun marriage. Nursing Homes:
Long Term Care Management, 56(4), 12-14. Retrieved July 17, 2008, from
EBSCO online database, SocINDEX with Full Text.

Tumlinson, A., Woods, S., & Avalere Health LLC. (2007). Long-term care in America:
An introduction. Retrieved July 17, 2008, from:

White, H. (2008). Promoting quality care in the nursing home. Annals of Long-Term
Care, 13(4), 26-33. Retrieved July 17, 2008, from:

Gibbs, L.M., & Mosqueda, L. (2004). Confronting elder mistreatment in long-term care.
Annals of Long-Term Care, 12(4), 26-33. Retrieved July 17, 2008, from:

Suggested Reading

Gaugler, J.E. (2005). Promoting Family Involvement in Long-Term Care Settings A

Guide to Programs that Work. Health Professionals Press, Baltimore, Maryland.

Kunkel, A., & Wellin, V. (Eds.). (2006). Consumer Voice and Choice in Long-Term
Care. Springer Publishing Co., New York, N.Y.

Salamon, M.J., & Rosenthal, G. (2003). Home or Nursing Home Making the Right
Choices. Springer Publishing Co., New York, N.Y.

Wunderlich, G.S., &. Kohler, P.O. (Eds.). (2001). Improving the Quality of Long-Term
Care. The National Academies Press, Washington, D.C.

Lattanzi-Licht, M., Mahoney, J.J., & Miller, G.W. (1998). The Hospice Choice: In
Pursuit of a Peaceful Death. The National Hospice Association, New York, N.Y.

Essay by Ilanna Mandel, M.A.

Ilanna Mandel is a writer and editor with over seventeen years of experience, specifically
in the health and education sectors. Her work has been utilized by corporations, non-
profit organizations and academic institutions. She is a published author with one book
and numerous articles to her credit. She received her MA in Education from UC Berkeley
where she focused on sociology and education.