Caring for a client with complex health needs over a long period continues to be a challenge for the healthcare system. Throughout history, consideration given to the quality of care for older adults or other vulnerable populations is seen as a reflection of societal values (Koop & Schaeffer, 1976). In societies with more fluid resources, vulnerable populations such as the frail elderly or individuals with chronic illness are better cared for because of the availability of assistance with health care (Kalisch & Kalisch, 2004). History has demonstrated that in societies under the strain caused by famine, war, or social upheaval, the vulnerable may not be able to survive because of malnutrition, lack of health care, and the lack of ability of the family unit to provide support.

A review of LTC in the United States reveals several significant events that have led to our current system of providing care. Prior to the 20th century, older adults in the United States were usually cared for within extended family units (DeSpelder & Strickland, 2011). Those without family to care for them might have gone to a facility supported by a religious organization or by charitable citizens, such as a poorhouse or almshouse. Changes in medical care altered hospital stays and allowed LTC to evolve, with group rest homes and private charitable homes providing care for chronically ill, dependent persons. Because life expectancies continued to increase, the demand for LTC increased. Political response came in the form of the Social Security Act in 1932, which provided services for the elderly and chronically ill. In 1951, the first White House Conference on Aging was held. The first conference (now held every 10 years, with the next slated for 2015) focused on issues that affected the quality of life of the aged person.

Title XVIII of the Social Security Act, which was passed in 1965 and was a part of the Great Society of President Lyndon B. Johnson, provided medical insurance for the elderly (Medicare) and further involved the federal government in health care (Centers for Medicare & Medicaid Services [CMS], 2011a). At the same time, in 1965, public policy was altered by the enactment of the Older Americans Act, which established aging networks throughout the states and funded community-based health services. Medicare opened the door for the government to dictate regulations and set the standard for care in formal caregiving settings. Evolution of the system included a restructuring of the Health Care Financing Authority into the CMS with the emphasis on improving the overall
process of coordinating care of complex illness in the context of managed care (Administration on Aging, 2008).

Part of the Social Security Amendments of 1965 was Title XIX, Medicaid, to provide medical and health-related services for individuals and families with low incomes. Medicaid, a cooperative work between each state and the federal government, is the largest source of funds for services to the poor. Each state establishes its own eligibility standards, sets the rate of payment for services, and administers its own program (CMS, 2011a). Further changes in LTC were accomplished by Title XX of the Social Security Act Amendments, which made in-home services for medically indigent more widely available. In 1972 legislation was established that paid for intermediate care. The Omnibus Reconciliation Act, passed in 1987, included the Nursing Home Reform Act, which established high quality of care as a goal, along with the preservation of residents’ rights in LTC facilities. Among the changes included was the requirement that comprehensive assessments of all nursing home residents were to be done to determine the functional, cognitive, and affective levels of the residents and to be used in planning care. In addition, more specific requirements for nursing, medical, and psychosocial services were designed to attain and maintain the highest possible mental and physical functional statuses by focusing on patient outcomes (Harrington, Carrillo, Blank, & O’Brian, 2010). Resident rights were also clearly defined. Organizations such as the National Association for Home Care and Hospice and others (Kempthorne, 2004) have seen the need for continued work on health policy in this area and have made LTC a high priority on the legislative agenda.

The Affordable Health Care Act passed in 2010 promotes a major overhaul of the existing healthcare funding system aimed at providing care to all Americans. This act is likely to undergo major revision before being funded and taking effect, but it will serve as a catalyst for change. (Updates may be found at the White House website: http://www.whitehouse.gov/healthreform.)

As Western culture has evolved, the family structure has been modified by the increasing number of women who work outside the home and are unavailable to care for aging parents (Gaugler & Teaster, 2006; Wagner, 2006). Current cultural values have made it less common for extended families to live together. However, Latino and Asian cultures often include extended families, with several generations living in the same household or nearby, which makes it possible for family members to look after the interests of vulnerable elder members and limits the need for formal LTC services (Leininger, 2002). In many cultures, the concept of the “double caregiver” adds enormous stress to women who work and provide care for a family and ailing parents (Remennick, 2001). However, current U.S. values emphasize single-family dwellings, dual-income families, and transient lifestyles, which have led to families no longer residing in the same area, often geographically separated by great distance. This culturally driven environment has created a high demand for services from an already inefficient LTC care system.

Vulnerable individuals are those who are at increased risk for loss of autonomy, loss of self-will, injustice, loss of privacy, and increased risk for abuse. A vulnerable adult is defined as an individual who is either being mistreated or is in danger of mistreatment and who because of age
and/or disability is unable to protect him/herself (Teaster, 2002). A vulnerable individual can be described as one who has been judged by someone to be a nonperson. Examples of vulnerable persons in LTC may include those with physical or mental or emotional problems, the elderly, those with dementia, and those who have been in prison. In a culture that values youth, energy, strength, and the ability to work, many devalue elders or those with chronic illness. Laws and practices differ between states in the areas of abuse, neglect, and protective services. Ultimately, it is the care providers and administrators in LTC who are responsible for maintaining an environment that supports the unique personhood of the client and protects the vulnerable.

Many individuals requiring LTC have already lost some autonomy and self-will because of illnesses that affect the individual’s ability to make decisions or carry out intentional behavior. Vulnerability is of special concern in these individuals. Decisions must be made for them regarding many aspects of life, such as eating, bathing, medication administration, socialization, and exercising religious practices. Some persons may benefit from the services of a guardian, discussed later in this chapter.

Abuse in the home or in a residential facility is an extreme threat to the autonomy of the client. If the nurse providing care is the first to observe signs and symptoms of mistreatment, reporting these observations to Adult Protective Services (APS) (or other public agency, as designated in the particular state) is required by law. In the home, the home healthcare nurse may be in a position to discover abuse and act as the primary advocate to prevent further abuse. The nurse may work with various agencies to ensure that appropriate intervention is made. Because elder mistreatment is often subtle, the nurse must be persistent in reporting signs until action is taken. If abuse or neglect of the community-based client is profound, a move to residential care may be indicated.

Along the continuum of LTC, problems in the provision of care include organization of services and access to care, gaps in public policy, funding, staffing, and standards of care. Specific issues vary within individual states or communities. It is imperative that the professional nurse involved in LTC is cognizant of the local and state issues that affect delivery and quality of LTC services. Being a political activist in order to further the issues of the recipients of LTC is also important.