Long-Term and Institutional Care

Abstract

Long-term and institutional care in the United States is provided to people with chronic health issues, terminal illnesses, and serious mental health conditions such as schizophrenia or dementia. Institutions can vary greatly, and they include nursing homes, hospices, and other institutional environments. Institutions may be run by the private sector, the government, or faith-based services. The primary difference between long-term and institutional care is that long-term care is often a community-based model whereas institutions are typically closed environments.

Overview

For some, the mention of institutional care options, such as hospice or palliative care, creates worrisome images. However, these services exist to provide important care functions in our communities. Yet not all people who require care want to go into a nursing home, and many 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 it. This requires an assessment of the community care services available so that family members do not burn out trying to support their loved ones who require round-the-clock care.

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 in the past and in the present as to whether the highest professional standards are being met by care providers.

Understanding Long-Term & Institutional Care. A wide range of people benefit from care services, 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 who need long-term care rely on a combination of family support and formal long-term care, including home care, adult day care, assisted living, and nursing home care.

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 disabilities, people with severe mental health issues, 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 after 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. According to a report by the National Commission for Quality Long-Term Care, "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" (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, financial, and practical 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.

ADL Assessment. The level of care required is driven by an assessment of activities of daily living (ADL). The assessment must be provided by a home-care professional. The assessment identifies the medical, psychological, functional, and social needs of the client (Phillips, Smith, & Cournoyer, 2004, p. 42).

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

LTC Professionals. The long-term care workforce includes physicians, nursing home and assisted living coordinators and administrators, registered nurses, licensed practical and vocational nurses, physical therapists, home health aides, and social workers, with nurses providing the majority of professional long-term care. The professionals who work in long-term care facilities are also under a great deal of pressure especially as the US 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, there is a dire shortage of professionals capable of working in long-term care facilities. The state of many long-term care facilities is thus a cause 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 (National Commission Report, 2007, p. 13). According to a 2013 congressional report prepared by the Commission on Long-Term Care, the professional workforce trained to provide long-term care will quickly become inadequate as the population of the United States ages: “There were only 7,356 board-certified geriatricians in the United States in 2012, and there is only 1 geriatric psychiatrist for every 11,000 older adults. If these rates continue, there will only be 1 for every 20,000 older persons by 2030” (Commission on Long-Term Care, 2013, p. 18).

Further Insights

Types of Long Term Care

Assisted Living. One option open to persons with the financial means is assisted-living facilities. These are private residences in which an individual who does not need twenty-four-hour or intensive care but may need a small level of assistance or supervision. The consumers who live in assisted-living residences such as these range from young adults with some form of disability who are otherwise independent to older adults (with or without disabilities) who also need some form of assistance with their daily tasks such as cleaning, grocery shopping, transportation, medication management, and other activities of daily living. However, these residences are expensive. The average cost for a private one-bedroom apartment in an assisted-living residence is $3,022 per month, according to the 2009 Overview of Assisted Living (American Association of Homes and Services for the Aging, 2009).

Another option is continuing-care retirement communities. In these residences there are nurses on staff and assisted living is available. Most residents are independent and live in their own apartments within a supportive 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 the United States. The federal and state governments pay for approximately 62 percent of paid long-term services and supports, amounting to more than $130 billion a year (Commission on Long-Term Care, 2013, p. 3). That may sound like a staggering amount, but considering the population of the United States that is quickly aging, that number is likely to increase substantially.

Nursing Homes. Nursing homes have evolved since the 1950s when standards for care were enforced by the Hill-Burton Act of 1946. The act was a necessity, since nursing homes actually had their beginnings in the old poorhouses of the nineteenth century. The poorhouses were the beginnings of institutionalized care and a place to send people who literally had nowhere 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 despite increased regulations and improved standards of care.

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 one another for qualified personnel.

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 homes provide treatment for people on a temporary basis as well. One of their functions is to provide a place for recovery after serious injuries or surgeries. This is known as subacute care, and nursing homes are increasingly serving in this capacity, which "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 that can lead people to require long-term care in a nursing home include multiple sclerosis, amyotrophic lateral sclerosis, dementia, and Alzheimer's disease. People with debilitating conditions often have a high level of complex needs ranging from assistance with daily tasks to regular physical therapy and constant supervision to ensure they do not endanger themselves.

One of the more recent advances in nursing care is in the way it has become a form of cooperative care with home care services. Since 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 1980s 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).

Hospices. Hospices offer quality end-of-life care. Some hospices are private institutions that provide palliative (end-of- life) care, and there is also hospice care available within certain 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), and coping with dying patients.

The primary distinction between nursing home care and palliative care offered by hospices is that the latter focuses on providing quality care as a person's end of life approaches, 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 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.

The rapid growth in the number of hospice patients served and the acceptance of hospice as a legitimate health-care provider for patients near the end of life is evident. It was estimated that 44 percent of Medicare beneficiaries who died in 2010 were under hospice care at the time of death, up from 23 percent in 2000 (Report to the Congress: Medicare Payment Policy, 2012).

The reality of institutional care is that some nursing homes (as noted above) may not be fully equipped or have a staff that is sufficiently trained to provide quality end-of-life care. However, research into hospice care and the reasons why more people decide to enter or stay in a nursing home are still unclear. The National Hospice Organization has published guidelines to help determine who is an appropriate candidate 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 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) and receive 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. There is an ongoing concern over the lack of quality in some nursing homes. Research has demonstrated that quality is not uniform across states. While consumers certainly benefit from information on quality and improvements in nursing homes across the nation, the question is whether, 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).

Viewpoints

Recommendations. 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 by the Institute for the Future of Aging Services (2007) 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,
• Attracting and hiring qualified personnel,
• Improving working conditions,
• Promoting career mobility for long-term care workers,
• Introducing technology that can save time and empower consumers to be more independent, and
• Providing financial incentives for further training and education

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 of 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 patients 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 above-mentioned report. Some of these include:

• Improving the performance of doctors who serve as medical directors in long-term care services,
• Developing model standards for nursing home administrators,
• Strengthening long-term care nurse competencies in geriatrics, administration, management and supervision, and
• Reassessing scopes of practice of registered nurses and licensed practical nurses working in long-term care settings (Institute for the Future of Aging Services, 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. 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.

Conclusion

To enter into long-term care is a significant and life-altering decision. It implies that there are important activities of daily living that can no longer be performed independently. Some individuals have required long-term care since childhood. In either situation, the standard of care is absolutely critical. The nation's most vulnerable people—people with disabilities, the elderly, and people with terminal illnesses 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. 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: 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.

Assisted living: The residences that emerged since the independent living movement for persons with disabilities began to have an effect in the 1970s. Assistive living refers to residences where persons live independently but utilize personal caregivers with some of their activities of daily living such as shopping and cleaning. People who live in AL residences do not need twenty-four hour care and do not need the services of a nurse or doctor in their daily lives.

Continuing care retirement communities: A community in which residents 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.

Faith-based services: 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: Either private institutions or part of a larger institution established to provide quality end-of-life (palliative) care.

Licensed practical nurse (LPN): A nurse who does not undergo the same level of rigorous training as a registered nurse (RN). LPNs must work under the supervision of an RN or a licensed physician. Although they are lower than RNs, they have more responsibilities than certified nursing assistants. They also work in a wide range of health care settings including hospitals and nursing homes.

Nursing homes: 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: The term for end-of-life care, usually provided by a hospice organization.

Registered nurse (RN): 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: A broad term for a wide range of communities for persons in retirement. Retirement communities are 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, and on-site medical facilities. The residents live in their own independent apartments.

Subacute care: Generally considered to be short-term care and/or rehabilitation.

Bibliography

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Suggested Reading

Dennis, M. K., Washington, K. T., & Koenig, T. L. (2014). Ethical dilemmas faced by hospice social workers. Social Work in Health Care, 53, 950–968. http://search.ebscohost.com/login.aspx?direct=true&db=sih&AN=99463166&site=ehost-live&scope=site

Garre-Olmo, J., et al. (2012). Environmental determinants of quality of life in nursing home residents with severe dementia. Journal of the American Geriatrics Society, 60, 1230–1236. Retrieved October 28, 2013 from EBSCO online database SocINDEX with Full Text. http://search.ebscohost.com/login.aspx?direct=true&db=sih&AN=77683871

Gaugler, J. E. (2005). Promoting family involvement in long-term care settings a guide to programs that work. Baltimore, Maryland: Health Professionals Press.

Kunkel, A., & Wellin, V. (Eds.). (2006). Consumer voice and choice in long-term care. New York, N.Y.: Springer Publishing Co.

Lattanzi-Licht, M., Mahoney, J. J., & Miller, G. W. (1998). The hospice choice: In pursuit of a peaceful death. New York, N.Y.: The National Hospice Association.

Lepore, M., Knowles, M., Porter, K. A., O'Keeffe, J., & Wiener, J. (2017). Medicaid beneficiaries' access to residential care settings. Journal of Housing for the Elderly, 31(4), 351-366. doi:10.1080/02763893.2017.1335669. Retrieved February 17, 2018, from EBSCO online database Sociology Source Ultimate. http://search.ebscohost.com/login.aspx?direct=true&db=sxi&AN=126573190&site=ehost-live&scope=site

Salamon, M. J., & Rosenthal, G. (2003). Home or nursing home making the right choices. New York, N.Y.: Springer Publishing Co.

Wunderlich, G. S., &. Kohler, P. O. (Eds.). (2001). Improving the quality of long-term care. Washington, D.C.: The National Academies Press.