The expanding elderly population is also becoming more elderly. By 2030 close to 20% of our population will be over the age of 65, which means that this demographic will have doubled from 30 to 60 million people and the population over the age of 85, which is the fastest growing demographic in our country, will also double from 3 to 6 million. Nursing home care is the fastest growing health care expense in the national budget. In 1990, long term care cost $53 billion in this country and by 2000 it was up to $140 billion. By 2030, long term care is estimated collectively to cost over $700 billion in this country. R
The types of patients that live in nursing homes can range from the elderly to younger adults. Individuals who enter a skilled nursing facility are those that typically cannot take care of themselves because of physical, emotional, or mental problems. They can no longer care for their own personal needs, such as eating, bathing, using the toilet, moving around, or taking medications. In addition they require more care than can be provided by their caregiver, and cannot live alone or might wander away if unsupervised. Individuals may also have extensive medical needs requiring daily attention or monitoring by a registered nurse who is supervised by a physician.
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Some individuals who live in nursing homes have chosen to do so and retain the capacity for choice. Other individuals, however, live in nursing homes not by choice, but by circumstance. They feel they have no acceptable alternatives or the choice of an institution is put upon them by family members or health professions, because they are too impaired to make decisions rationally or to resist. They come to see themselves as having no other choice. This does not mean that there are no alternatives, but simply that the decision to live in a nursing home was influenced by economic, medical, and social circumstances that make the decision more a matter of acceptance than free choice. Indeed, in the face of pressure from physicians and family members, they might experience the decision to enter a nursing home as coerced.
The situation is complicated further by concerns over past promises that families may find they can no longer keep. Families anticipate a normal aging process for elders that they think they can accommodate. Disease is not part of this norm and dementia is a disease process that is not a part of normal aging. Thus, when disease happens, plans have to be reconfigured. For the family that has staunchly promised to support aging parents at home, the nursing home can represent failure, shame and abandonment.
The history of the modern nursing home has harsh beginnings, dating back to the nineteenth century poorhouses that sheltered the destitute elderly. These institutions were places of both asylum and detention, housing a diverse population of the poor, the chronically disabled, and the mentally ill. Mid-nineteenth-century morality tended to see poverty and disability, even in old age, as signs of an undisciplined life. The harshness of the poorhouse and the social stigma attached to it were intended to prompt citizens to be provident for their old age and to avoid public dependency. R
Despite their grim physical conditions, poorhouses remained the primary institutions for the dependent elderly well into the twentieth century. Even though, near the turn of the century, churches and benevolent associations began to sponsor private nursing homes, the number of elderly seeking refuge in county or municipal poorhouses continued to rise.
With the growing numbers of individuals seeking long term care, government stepped in and Congress amended Social Security of 1935 to allow federal support to individuals in public facilities. For the first time, both public and private nursing-home residents were granted federal support for their assistance. However, a continuation of growing concern for aging adults prompted the Amendment of 1965 which had provisions that resulted in the creation of two programs: Medicare and Medicaid. The legislation initially provided federal health insurance for the elderly (over 65) and for poor families. The formation of these two programs allowed the elderly a way of affording better standards of care. However, many investigations of the industry in the 1970s showed that many of these institutions provided substandard care. Lacking the required medical care, food, and attendants, they were labeled "warehouses" for the old and "junkyards" for the dying by numerous critics. R These criticisms prompted the formation of organizations and laws protecting the rights of the elderly.
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The Nursing Home Reform Act is part of the Omnibus Budget Reconciliation Act of 1987 which was a result of numerous studies with less than favorable results that were conducted at the request of the Congress by the Institute of Medicine and found that residents of nursing homes were being abused, neglected and given inadequate care. R After the findings, the Institute of Medicine proposed major reforms within the nursing home industry and most of the proposed changes became law in 1987. This law was designed to protect nursing home residents and to ensure that they are receiving quality care, which will help them achieve or maintain their "highest practicable" physical, mental and psychosocial well-being. To accomplish this objective, the Nursing Home Reform Act required that nursing homes provide certain services to each resident. It also sets minimum standards of care and rights for people living in certified nursing facilities. In order to ensure that this is provided states conduct unannounced surveys, including resident interviews, periodically throughout a 15-month time span. These surveys focus on residents' rights, quality of care, services provided and quality of life. If a nursing home that is receiving federal funds fails to meet the requirements set forth by the Nursing Home Reform Act, then a deficiency is issued and must be addressed to continue funding.
Under the Nursing Home Reform Act, nursing home facilities must provide the following services: regular evaluations for each resident, a complete care plan, nursing services, social services, rehabilitation, pharmaceutical care, dietary services, and a full-time social worker if there are more than 120 beds. The Nursing Home Reform Act also created rights for nursing home residents. These rights are as follows and are posted on AARP's website: R
The right to freedom from abuse, mistreatment, and neglect;
The right to freedom from physical restraints;
The right to privacy;
The right to accommodation of medical, physical, psychological, and social needs;
The right to participate in resident and family groups;
The right to be treated with dignity;
The right to exercise self-determination;
The right to communicate freely;
The right to participate in the review of one's care plan, and to be fully informed in advance about any changes in care, treatment, or change of status in the facility; and
The right to voice grievances without discrimination or reprisal.
The Older Americans Act is a long-term care ombudsman program. The purpose of the program is to investigate and resolve complaints of residents of nursing facilities, board and care facilities, and other adult care homes. R Complaints may relate to action, inaction, or decisions of long-term care providers or their representatives and other actions that adversely affect the health, safety, welfare, or rights of residents. In addition, this program also advocates for the prevention of elder abuse, neglect, and exploitation. Under this program, states are required to carry out activities to make the public aware of ways to identify and prevent abuse, neglect, and exploitation and to coordinate activities of area agencies on aging with state adult protective services programs.
The Patient Self-Determination Act (PSDA) was passed by the U.S. Congress in 1990 as an amendment to the Omnibus Budget Reconciliation Act of 1990. R This legislation required many hospitals, nursing homes, home health agencies, hospice providers, HMOs, and other health care institutions to provide information about advance health care directives to adult patients upon their admission to the healthcare facility. The purpose of the Patient Self-Determination Act was to inform patients of their rights regarding decisions toward their own medical care, and ensure that these rights are communicated by the health care provider. Specifically, the rights ensured are those of the patient to dictate their future care (by means such as living will or power of attorney), should they become incapacitated. The PSDA requires that patients are given written notice upon admission to the health care facility of their decision-making rights, and policies regarding advance health care directives in their state and in the institution to which they have been admitted. Patient rights include: right to facilitate their own health care decisions; right to accept or refuse medical treatment; and the right to make an advance health care directive. R
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The Protective Services for the Elderly (PSE) is a program that is designed to safeguard people 60 years and older from physical, mental and emotional abuse, neglect and abandonment and/or financial abuse and exploitation. Department of Social Services social workers devise a plan of care aimed at assuring an elder's safety while preserving the person's right of self-determination. Staff may help the person remain in the living situation he or she prefers, safeguard legal rights, prevent bodily injury or harm, determine service needs and then mobilize resources to provide necessary services.
The plan may include crisis intervention, arranging for and coordinating any of the following services: adult day-care, companionship, counseling, homemaker, home health care, home-delivered meals, and long-term care or, if necessary, emergency convalescent placement. Each state governs its own program to protect the elderly. The New Jersey Department of Health and Senior Services has an Adult Protective Services (APS) program in each of the 21 counties that is monitored and evaluated by state staff. R Complainants may be clients, caregivers, family members, agencies or any interested or involved individuals. An APS investigation is a thorough assessment of a potential at-risk adult in which they determine the competence of the adult and assess the risk of abuse, neglect or exploitation.
The National Center on Elder Abuse (NCEA) serves as a national resource center dedicated to the prevention of elder mistreatment. To carry out its mission, to ensure that older Americans will live with dignity, integrity, independence, and without abuse, neglect, and exploitation, the NCEA disseminates elder abuse information to professionals and the public, and provides technical assistance and training to states and to community-based organizations. R The NCEA has resources available on-line regarding collaborating research, training, and information about promising practices and interventions.
The American Medical Directors Association recommends that each nursing facility should have available an ethics mechanism to assist medical directors, attending physicians, residents, families and facilities in managing ethical decisions such as do-not-resuscitate issues and other end-of-life decisions. R These recommendations allowed ethics committees to become policy in 1997. The importance of ethics committees in nursing homes consists in their ability to balance reasonable treatment and guidance with the respect and dignity that comes as a right to all residents. The basic approach of ethics committees then is to maintain a healthy relationship between caregivers at all levels and residents so that the former are permitted to do their job and maintain a reasonable quality of life for all involved while not treating their charges as objects of a routine.
The basic idea of an ethics committee in a nursing home is to protect the rights of residents. The fact that these residents are impaired at various levels of severity means that caregivers have a power over them that does not exist in the broader society. Hence, rights must be respected in what is a delicate situation of control and coercive powers that can become highly problematic to residents and the guarding of their quality of life. By respecting the rights of patients in the course of care, a world is created where the quality of life of residents is placed at its maximum achievable height. The rights of residents cannot be separated from their quality of life in any regard.
These individuals are particularly vulnerable and the ability to exert control over their situation and make rational choices regarding treatment and other aspects of their life is markedly limited. The autonomy of residents in nursing homes is negatively impacted by functional impairment, loss of decision making capacity, and increasing dependency. This often means that decisions regarding treatment are left to family members and providers who may not have a clear idea as to the preferences of the patient.
To respect autonomy is to treat someone as an adult, to expect him or her to act responsibly, and to acknowledge and support his or her capacity for self-determination. Elderly people should be able to live out their lives with dignity, security and independence. Although many people living in nursing homes are dependent, they are not completely dependent. Individuals who cannot ambulate might nonetheless be fully capable of deciding where and when they go, what they want to do, and with whom they want to spend time. Even people who are cognitively impaired can and do function on their own in many ways. Elderly who wander might appear to do so aimlessly, but they are still doing so on their own. That means that many individuals retain some capacity for self-initiated action, and it is a mistake to think that they lack autonomy.
Physical therapists should practice beneficence in medical decision making and not be a neutral party. They should encourage acceptance of an appropriate treatment, being careful not to coerce or deceive the patient. Autonomy can come into conflict with Beneficence when patients disagree with recommendations that health care professionals believe are in the patient's best interest. When the patient's interests conflict with the patient's welfare it is important for healthcare professionals to educate their patients especially with medically complicated diagnosis that are seen in nursing homes.
Although even while seeking the greater good for the patient it is important to adhere to the rights of the patient which are protected under the law such as having the right to be treated with dignity and respect, being informed in writing about services and fees before they enter the nursing home, having the right to manage their own money or to choose someone else they trust to do it for them, having the right to privacy, and having the right to be informed about their medical condition and medications and having the right to refuse such medications and treatments. R
Often joined with beneficence is the term nonmaleficence, which stands for the Hippocratic duty to "do no harm." Healthcare providers must refrain from providing ineffective treatments or acting with malice toward patients. One can find conflicts between beneficence and nonmaleficence in almost any clinical situation. By providing informed consent, physical therapists give patients the information necessary to understand the scope and nature of the potential risks and benefits in order to make a decision, overall, it's the patients' decision. However, many elderly have diminished or fluctuating capacity and can be supported in their initiation of some autonomous decision making. They may require advocate to communicate a choice or make decision that will promote the patient's welfare. In order to exercise the right of autonomy, a patient must first possess the capacity to make decisions. There are four elements related to decisional capacity first described by Appelbaum and Grisso in an article in the New England Journal of Medicine in 1988 are (1) The ability to communicate a choice; (2) The ability to understand the relevant information; (3) The ability to appreciate a situation and its consequences; and (4) The ability to reason rationally. R A physical therapist must always put the patient first and provide the most information available regarding their treatment in order for them or their advocate to make the best decision for their care.
There are always ethical issues which will arise when caring for patients, especially those that are debilitated. It is important to keep in mind that no matter a patient's physical or cognitive condition they still possess certain rights over the direction of their care which must be respected. As physical therapists it is important that we adhere to maintaining these rights for the patient as an advocate for their care. The ethical principles which are applicable regarding the rights of the patient are:
According to the APTA Guide for Professional Conduct. . .
Principle 1: A physical therapist shall respect the rights and dignity of all individuals and shall provide compassionate care.
According to the APTA Code of Ethics . . .
Principle 1A: Physical therapists shall act in a respectful manner toward each person regardless of age, gender, race, nationality, religion, ethnicity, social or economic status, sexual orientation, health condition, or disability.
Another important issue when providing care for patients is education. Physical therapists must make available all the possible options and reasoning behind treatment choices appropriate for the patient. The patient or advocate must be allowed the right to be proactive in the decisions regarding the recommended plan of care. The ethical principles which are applicable regarding the importance of education and decisional capacity of the patient are:
According to the APTA Guide for Professional Conduction . . .
Principle 2: A physical therapist shall act in a trustworthy manner towards
patients/clients, and in all other aspects of physical therapy practice.
. . . and . . .
Principle 2.4A: A physical therapists shall not restrict patients' freedom to select their provider of physical therapy.
. . .and . . .
Principle 2.4E: A physical therapist shall respect the patient's/client's rights to make decisions regarding the recommended plan of care, including consent, modification, or refusal.
According to the APTA Code of Ethics . . .
Principle 2A: Physical therapists shall adhere to the core values of the profession and shall act in the best interests of patients/clients over the interests of the physical therapist.
. . . and . . .
Principle 2D: Physical therapists shall collaborate with patients/clients to empower them in decisions about their health care.
It has been said that the "moral heart of a society can be judged by how well it provides for those at the dawn of life, those in the shadows of life, and those in the twilight of life. Nursing homes are places of lengthening shadows at twilight." R By and large nursing homes are the last refuge in our society's broader system, in an aging society with increasing pressure on families as support systems, and inevitable limits on what home care or community based elderly care can provide it is important as health care providers that we continue to advocate for our patients and provide the best possible care.