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Authors

  1. Buhler-Wilkerson, Karen PhD, RN, FAAN

Article Content

Inventing Home Care's Legacy

In early 19th-century America, care for the sick was part of domestic life guided by family traditions and the advice found in the medical or nursing manuals of the era. When families hired physicians or nurses, professional care was delivered in the patient's home, most often with the help of female assistants, or occasionally a servant. Yet, for those without family or financial resources, few healthcare options were available.

  
Figure. Elderly blin... - Click to enlarge in new windowFigure. Elderly blind woman with nurse.

The earliest U.S. efforts to care for the sick at home (1813) were motivated by a tradition of religious benevolence among wealthy ladies of Charleston, SC, who entered homes of the poor and dependent to provide care and domestic comfort.

 

Although caring for the poor was an obligation of their class, the ladies were nevertheless confronted by the customary challenges and questions regarding home care:

 

* Who was worthy to receive care?

 

* Who was responsible for that care?

 

* What type of care should be provided and for how long?

 

 

Since nursing's origins, records kept by the Ladies Benevolent Society (LBS) demonstrated these central dilemmas of caring for the sick at home.

  
Figure. Visiting nur... - Click to enlarge in new windowFigure. Visiting nurse (with wide-brimmed hat) in tenement home.

Along with these three critical questions, the LBS also struggled with family circumstances and chronic illness. Families and their home life were unpredictable and often uncontrollable, yet were a vital determinant of the outcomes of care. First and foremost, the chronically ill challenged both the mission and economics of the LBS.

 

They quickly discovered that discharging the needy chronically ill violated a sense of benevolent duty, while maintaining such patients as part of the caseload threatened the longevity of the organization. Even worse, the LBS found it impossible to distinguish who were the most deserving among the chronically ill. Ultimately, care was limited to the acute phase of illness and eventually the LBS resorted to medical certification of necessity.

 

The ladies were forced to conclude that some problems simply should not be cared for at home. The mid-century opening of Charleston's first hospital offered an alternative to the complexities of care at home and demand for home care began to decline. Charleston's efforts to determine how best to deliver home care, especially to the poor and chronically ill, remains an excellent prototype for issues that would loom larger and longer on the healthcare landscape of the United States.

 

By the end of the 19th century, urbanization, industrialization, immigration, and the constant danger of infectious diseases were transforming most large cities into increasingly unhealthy places to live. The relationship between poverty and illness was indisputable and popularization of the germ theory of disease provided further motivation to protect society from uncontrolled disease.

 

The Visiting Nurse Arrives

Guided by English precedent inspired by Florence Nightingale, introduction of the visiting nurse in the United States was a logical extension of religious convictions and social obligations dominating the activities of an earlier generation of citizens, such as the women of Charleston. Nightingale's popular allure, combined with the growing availability of trained nurses, provided a practical solution to the urban threats of disease and disorder.

 

The image of the nurse climbing tenement stairs to care for the indigent and protect society from diseases of the "dangerous" classes appealed to numerous turn-of-the-century reformers. Motivated by a shared vision of the good society, wealthy ladies in New York, Philadelphia, Boston, Buffalo, and Chicago began to hire nurses to bring care, cleanliness, and character to the homes of the sick poor. By 1909, nearly 600 organizations across the country were sponsoring the work of visiting nurses

 

Visiting nursing also appealed to a newly emerging nursing leadership striving for recognition as a profession. Such work promised to satisfy womanly desires for social uplift and to enhance the status of nursing. Working alone in homes of the poor, nurses occupied center stage and attained a distinct importance within society.

 

In the beginning, most visiting nurse organizations were aptly described as the pet projects of a small group of "lady bountifuls." Lady managers dominated all matters from general policy to the most petty decisions. Simply put, ladies were not nurses and nurses were not ladies-each, therefore, made their own unique contribution to the enterprise of caring for the sick at home.

 

The ladies found and managed the money and supervised the care provided by "their" nurses. In turn, visiting nurses were expected to be preeminent practitioners in their chosen work-showing good judgment, common sense, patience, humor, personality, and the requisite scientific knowledge for care of the sick. But as the work grew more complex, both in volume and type of cases, these organizations could not survive under the management of a few volunteers donating time for a good cause.

 

Reluctantly, lady managers increasingly recognized that their beloved organizations needed revamping, and city by city, a pattern of radical reorganization and redefinition of authority occurred. A new kind of nurse superintendent was required for the management of any organization providing care for the sick at home.

 

These ideal nursing superintendents were well educated, were from good families, and brought a sympathetic understanding of the past and a clear vision of the future. As nurses began to dominate home care, the lady managers gradually receded into the background, and profoundly different organizations were created.

 

Nurses in the Home

Nurses who frequently found themselves alone in patient's homes without direct medical oversight simply took charge. Protected by standing orders and nursing procedures endorsed by the local medical group, nurses in the home exercised considerable authority. They saw their role as service to the patient, rather than to the physician. On daily rounds, visiting nurses attended to the patient's environment, nourishment, and medicines. They alleviated distressing symptoms, intervened in emergencies, gave necessary treatments, brought the latest in portable medical technology, provided health education to all ages, and were welcomed visitors. Their patients were women, men, children, mothers and their newborns, school children, workers, the elderly, and the injured. In addition to general care, these nurses often found it necessary to contribute clothes, food, equipment, child care, housekeeping services, and assistance to exhausted family income providers in need of relief from caregiving responsibilities.

 

Eventually, the growing availability and acceptability of hospital care solved the problem of patients requiring continuous care, surgery, or having certain "dangerous" illnesses. But what to do about patients who failed to get well, or to die, persisted as a chronic dilemma.

 

Building on knowledge gained as part of an agenda of social reform during the Progressive Era, along with the public health movement of the late 19th and early 20th centuries, Lillian Wald further advanced the concept of healing at home.

 

Lillian Wald and the Professionalization of Visiting Nursing

Hoping to demonstrate a new paradigm for nursing, Lillian Wald invented the term public health nurse to describe nursing practice that considered sickness within its social and economic context. Her charge to the nurse was not only to provide bedside care of the sick, but also to identify and correct the underlying causes of illness and misery so there would be less sickness to nurse and cure in the future. Wald truly can be credited with professionalizing visiting nursing.

 

Her ability to analyze and to describe the essence of overwhelming problems resulted in innovative and pragmatic remedies. Like her colleagues, Wald discovered that to care for the sick successfully at home required much more than medicines. As the definitive public health nurse, she was instrumental in securing reforms in health, industry, education, recreation, and housing.

  
Figure. Portrait of ... - Click to enlarge in new windowFigure. Portrait of Lillian Wald.

Home Care Insurance Coverage Introduced

Among Wald's most impressive innovations was establishment of insurance coverage for home care. Relying on documentary evidence of the visiting nurses practical value, Wald convinced the Metropolitan Life Insurance Company (MLI) to examine the cost effectiveness of their policies. For a modest fee, MLI could include a visiting nurse benefit, and in the long term, reduce the number of death benefits paid. The experiment was a great success and initiated the first of 100 million home visits to MLI policy holders across the country between 1909 and 1952.

 

While visiting nurse associations were delighted with MLI's financial support, they were less enthusiastic about the need to conduct their work in a more business-like fashion. This included methods of case finding, documentation, billing, standards, cost analysis, and examination of outcomes.

  
Figure. Nurse on the... - Click to enlarge in new windowFigure. Nurse on the roof, 1910.

Scientific case-management, requiring either quick recovery or discharge to family caregiving, proved the most unpalatable of MLI's administrative demands. Ultimately, visiting nurse associations found the transition from benevolent benefactor to purveyor of rationed, cost-effective care in conflict with their mission and values.

 

For its part, MLI publicly claimed that their nursing service saved money and lives, while remaining privately concerned about the business acumen of visiting nurse associations. Staff at MLI were astounded by the tremendous variations in practice patterns across the country, which were strongly influenced by family and local circumstances. Both were powerful determinants of the kind, duration, and complexity of care required by the sick at home.

 

Furthermore, the nurse's priorities, which in the view of MLI always placed needs for care over cost containment, proved uncontrollable. When given the option, visiting nurses provided too many visits for too long. By the 1920s, MLI reported denial of payment was as high as 24%. Naturally, care of the chronically ill was especially problematic from such a business perspective.

  
Figure. Answering th... - Click to enlarge in new windowFigure. "Answering the Call."

Following the Great Depression, MLI's payments for visiting nurse services declined dramatically. Policy holders now lived longer and increasingly sought hospital care when seriously ill or giving birth. Declining use of the nursing service, coupled with its rising cost to MLI, predicated the demise of the service long before its cessation in 1952.

 

A Time of Change

In the world of healthcare, all was being transformed by the 1920s. The hospital was recast from a place of last resort for the urban poor to an indispensable institution. By 1920, the number of hospital beds was increasing faster than the population. As hospitals became an accepted part of medical care, physicians-bolstered by advances in diagnosis and therapeutics-also assumed a new legitimacy.

 

For many families, this institutionalization of caregiving responsibilities during illness became an attractive solution. Predictably, the more sophisticated technology available in hospitals also meant more expensive care. While modern hospitals sought ways to maximize patient income, they quickly recognized that deficits occurred when patients stayed too long or paid too little. Any alternative that released hospitals from the burden of patients unable to pay for care was attractive. The desirable outcomes of hospitalization of the poor remained cure, death, or timely discharge to home.

 

Along with transformation of the hospital, the world of home-based care also underwent dramatic change. The growing tendency to care for the sick in hospitals affected the ability of VNAs to attract philanthropic contributions and to maintain financial stability.

 

Acknowledging that in the future, fewer patients of any kind would be at home, VNAs considered their choices. Once again, examination of productivity, efficiency, budget controls, and service costs suggested that survival required more than just good business practices. The only obvious solution was to find a new source of income.

 

By the 1930s, the work of the visiting nurse shared little in common with its earlier origins. Dangerously ill patients were infrequent and communicable diseases were rare. Old slogans like "their health is your health" held little meaning in the world of fund raising. Increasingly, chronic illness consumed as much of the visiting nurses' time as caring for acute illness, but it hardly appealed to potential donors.

 

As the ladies of Charleston learned a century before, caring for the chronically ill was a vexing problem, best avoided or referred elsewhere if possible. Visiting nurses understood the intractable problems caused by chronic illness, but lacked the means for financing innovations. No one wanted to assume the burden posed by the chronically ill.

 

By the late 1950s, hospitals increasingly used referral to home care to facilitate discharge of patients. Thus, the patients served by VNAs were inevitably chronically ill and often poor. While the number of patients cared for at home actually de- clined, chronic illness meant an increase in costs and numbers of visits.

 

For VNAs of the period, financial troubles and the impending loss of MLI payments brought retrenchment, cut backs, and curtailment of programs. Nevertheless, many VNAs persisted, patching together funds from local Community Chests, investment income, fees from patients, contributions from friends and lady managers, and public funds from departments of welfare.

  
Figure. Male patient... - Click to enlarge in new windowFigure. Male patient in wheelchair with nurse.

During this period, the newly evolving health insurance programs began to reexamine the potential of home care, although still to be resolved were the issues of utilization patterns, cost, and uncontrollable demand for services. VNAs were dismayed by the insurance industry's hesitancy to recognize and underwrite home care. Deeply committed to the communities they served, and believing in the services offered, VNAs across the country searched for sustainable strategies for their traditional mission of caring for the sick.

 

A New Home Care Movement

By 1955, needs for long-term care and the high costs of institutional care stimulated further interest in home care. As if decades of service by VNAs had never occurred, the government and the American Medical Association studied home care and pronounced its coming of age in prestigious medical journals.

 

With physicians at the helm, the newly reinvented home care movement was declared a dynamic approach to the far-reaching problems of the chronically ill. Suddenly, home care was a crucial and respected component in the continuum of care.

 

Even with such unbridled enthusiasm, certain difficulties arose as soon as home care was tested. For example:

 

* Physicians did not readily choose to make house calls,

 

* reduction in utilization and costs of institutional care remained debatable,

 

* identifying the appropriate recipients of home care proved complicated,

 

* requirements for personal care were almost as great as those for medical care, and

 

* control of home care coverage proved nearly impossible.

 

 

Given these realities, the inclusion of home care in any federal health program seemed unlikely. Yet, home care appeared, disappeared, and reappeared during a decade of debate that finally resulted in passage of the Medicare legislation in 1965.

 

Backed by popular demand, and endorsed by the Senate Committee on the Problems of the Aged and Aging, and the White House Conference on Aging, a place for home care was assured. While congressional testimony between 1961 and 1965 covered the familiar themes, debates, and cautions, home care was included in every proposed bill.

 

In a now familiar chorus, some warned that the home care benefit contained great possibilities for expansion and substantial increases in cost while others promised it would save money. Ultimately, home care's perceived capacity to empty hospital beds resulted in its inclusion as a posthospital benefit.

 

Medicare: Home Care's Second Coming

Implementation of the Medicare program marked the beginning of a new era for home care, with federal funding providing a much-needed infusion of income. Almost overnight, Medicare redefined home care to include only those selected functions and prescribed circumstances that were reimbursed.

 

Reminiscent of lessons learned by the ladies of Charleston and the MLI, home care was limited to the acutely ill and required certification that care was medically necessary. As an alternative to hospital care, home care was not designed to meet the needs of the chronically ill which continued to be seen as limitless and uncontrollable. As always, the chronically ill were expected to manage at home with informal support from family, friends, or neighbors.

 

Over the years, legislative, judicial, and regulatory changes resulted in exponential expansion of the home care benefit. By the 1990s, a program designed to meet the needs of short-term acute illness was also providing long-term care to the chronically ill. Ambiguity over interpretation of benefits had created the opportunity for providers of home care to recast the Medicare regulations to better meet a broader set of patients needs.

 

Just like the MLI, the government suddenly found it, too, could not manage or control home care. While presumed reasonable, necessary, and medically appropriate, home care's expansion was deemed unsustainable and demands for reform were heard once again. The outcomes of this so-called reform were swift and dramatic:

 

* over 3,000 home care agencies closed,

 

* the number of visits per patient was decreased, and

 

* public funding for home care was significantly reduced.

 

 

Finally, the recently introduced prospective payment system has meant yet another reinvention of care at home.

 

Predictably, legislators refused to deal with the really tough political questions:

  
Figure. Contemporary... - Click to enlarge in new windowFigure. Contemporary Philadelphia visiting nurse.

Was caring for the sick a private family obligation or a responsibility shared with a caring society?

 

Should home care be provided only under the most restrictive of circumstances or whenever it can help; or should we simply not decide and continue to muddle along?

 

Clearly, we have learned how to provide and finance home care and we know its benefits both socially and economically. Even in fiscally challenging times, we have solutions and resources at our disposal. Our task, at this particular moment, is to determine once and for all:

 

Who pays, for whom, for what, and how much?

 

Current crises regarding the security and health of the country, and the attendant financial pressures, are likely to squeeze home care in the next few years. However, since the terrorist attacks of September 11, we may perhaps have a renewed sense of the value of a caring society. Perhaps we may even decide to reach out to our neighbors and institutionalize ordinary caregiving, since for most of us, there is no place like home.

 

Acknowledgments

This article is a brief overview of Karen Buhler-Wilkerson's No Place Like Home: A History of Nursing and Home Care in the United States (Baltimore: The Johns Hopkins University Press, 2001). This project has been generously supported by the National Library of Medicine, National Center for Nursing Research, University of Pennsylvania Research Foundation, Frank Morgan Jones Fund at the University of Pennsylvania School of Nursing, and Bayada Nurses Home Care Specialists.