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"A good look back over our shoulders".

The first nursing homes often provided no nursing and could hardly be classified as "homes." Long-term care has come a long, long way!

Had pioneering nurses and others pushing for healthcare reform in the first decade of this Century gotten their way, the history of nursing homes in the United States, as we know them today, might be considerably longer, and the histories of their predecessors considerably shorter. Early attempts to routinely involve nurses in--and thus improve and standardize--the care of the elderly and chronically ill took the better part of the century to become common practice.

Even though change in long-term care has come slowly and sporadically, and despite some hair-raising horror stories found in the pages of its history, a look back reveals that, in the end, efforts to improve care for the aged and infirm have somehow managed to conquer apathy, greed and shortsightedness. This look back also shows that some things never change.

To say that long-term care has improved dramatically over the past 100 years would be a gross understatement. No longer are the elderly who need healthcare or custodial care relegated to dreary, inadequate, disease-infested almshouses--also known as poorhouses and poor farms and county infirmaries--to be jammed together shoulder-to-shoulder with prostitutes, criminals, orphans and the mentally ill. No longer is it common practice to routinely leave aged residents strapped in wheelchairs for hours on end, staring blankly at walls through eyes glazed over by drugs or loneliness or neglect.

Despite all the improvements that have occurred, some problems remain. Challenges with staffing and funding, for example, are common threads woven throughout the history of long-term care--threads that don't seem about to be broken anytime soon. But, in looking back at the past, those whose passion is caring for our elderly and chronically ill can take heart in just how far we have come.

As Dr. S.D. Doff wrote in the March 1962 issue of Nursing Homes:

Unlike Lot's wife we, who are interested in the care of long-term illness, have nothing to fear from taking a good look back over our shoulders. Rather like the pilot of a small boat, there is a distinct advantage in looking back at the shore we have just left in order to be a little more certain of the course ahead. [1]

This article is not intended as a comprehensive history of long-term care, but hopefully the anecdotes and brief glimpses backward that follow will provide insights from "the shore we have just left"--and a word of encouragement for those in long-term care who are continuing along on "the course ahead."

Crude Beginnings

To be old and alone and ill or frail at the beginning of the 20th century was a frightening proposition. While the more fortunate elderly had families to care for them in their homes--or were, perhaps, members of ethnic or religious communities that provided food and shelter to their aged in a private setting--the less fortunate might very well have found themselves in the proverbial poorhouse. And poor it was in everyway: poor (if any) sanitation, poor food, poor clothing, poor sleeping arrangements, no nursing care and little, if any, medical care. The impoverished elderly were basically warehoused until they died.

The forerunners of today's not-for-profit homes, sponsored by churches and service organizations and ethnic communities, were clearly superior to the public almshouses, but they didn't provide nursing care, either, in their earliest years. According to Ellen Schell in her Nursing History Review article, "The Origins of Geriatric Nursing," these homes for the aged, "founded...in the second half of the nineteenth century...provided custodial rather than medical care for the residents." [2]

One champion for change near the beginning of the 20th century, was Lavinia L. Dock, a nurse, socialist and suffragette who sought to reform the horrendous conditions present in almshouses by lobbying for the involvement of trained nurses to provide care for the unfortunate people who lived there. An ally in her cause was Caroline Bartlett Crane, chairman of the Charity Organization Department of the

Women's Improvement League of Kalamazoo, Michigan. [2]

According to Schell, Dock reported in an American Journal of Nursing editorial in 1906 that Crane had "proposed an alliance between the State Nurses' Association and the Michigan State Federation of Women's Clubs to provide nursing care in almshouses. The nurses' association would supply the nurses and the women's clubs the required salary."

Then, at a national meeting of the Nurses' Associated Alumnae in 1907, Crane made her case again, joined by Michigan nurse L.J. Lupinski, who "reported on the progress of the Michigan alliance." The alliance had successfully funded a hospital wing for one almshouse and planned to hire two nurses to staff it, but because of resistance from local government, [2] had failed in its attempts to place a nurse in another county's almshouse, despite having raised the money for the nurse's salary.

Schell wrote, "Lupinski was even more discouraged by the fruitless search for a nurse willing to apply for the position. Lupinski blamed the lack of applicants on the low salary offered ($50 per month)." [2]

It appears this movement to introduce nursing into the almshouses languished for some time, because Schell went on to say, "Political entanglements, low pay, low status, and lack of women's political power appear to have combined to hamper the progress of almshouse nursing. Twenty years passed before the journal [American Journal of Nursing] published another article on the subject." [2]

In a 1916 article for Catholic World, James J. Walsh, MD, PhD, blamed deplorable conditions in hospitals (and their associated almshouses) on their post-Reformation "secularization" and on the "exclusion of women from positions of responsibility therein." [3] He wrote, "At Blockley, the great public hospital of Philadelphia, prevailing conditions even in the latter part of the second half of the 19th century were simply indescribable. ...Blockley, besides being the hospital, was also the almshouse of Philadelphia. Miss Nutting and Miss Dock have told some of the shocking details; and they have also told of one interval when something like intelligent care and order came to Blockley. That interval was when the Sisters of Charity took charge. Their

History of Nursing says on this matter:

Only one short interregnum of peace broke the long and distressing reign of violence, neglect and cruelty in Blockley. In 1832 there was a severe epidemic of cholera, and the attendants demanded more wages. To keep them to their duties the wages were increased, but were promptly spent for liquor. An orgy of intoxication ensued, and the helpers, crazed with drink, fought like furies over the beds of the sick, or lay in drunken stupor beside the bodies of the dead." [3]

The Nutting and Dock quote went on to say that the guardians (at Blockley) called upon the Bishop, requesting that Sisters of Charity be brought in, and that they responded quickly and restored order.

Walsh wrote of the plight of the needy aged: "With regard to this problem--the care of the aged poor--I may say at once that our present mode of caring for them [in 1916] is almost barbarous.... The number of the indigent aged is very large. Few realize that statistics show that nine out often people who live to be sixty-five or over must receive aid of some kind before the end of their lives. Fortunately the majority have children or friends who aid them, but the others must be cared for by the community.

"Throughout the country the poor are usually housed in what we call poorhouses...usually one large building for the men and, some distance away, a similar building for the women.... We place the old people in these poorhouses; give them enough to eat and tell them to be happy. The old men must associate with the men of their own age, usually tiresome enough, but, harder still to bear, the old women must associate with the women of their own age. There is not a chance of a child coming near them, though the one thing that makes life worth living for the old is to have the young grow up around them. We call this charity." [3]

It is noteworthy, when viewing the history of long-term care, that many of the "new" concepts recommended today in caring for the aged--in this case, the benefit of interaction with children--were heralded, or at least hinted at, early in this century.

Another Ancestor

The convalescent home represents another antecedent of the nursing home as we know it today.

In 1922, John Bryant, MD, of Boston, wrote Convalescence I. A Chronological Review, to 1878. In his introduction, he described a "chronic apathy of the medical profession with regard to serious interest in the subject of convalescence--a lack of interest which is doubtless promoted by inadequate instruction in the subject at all medical schools. This lack...is perhaps itself in part based upon the fact that the period of convalescence is not a subject well adapted to easy demonstration in the clinic or lecture room; obviously, where changes are demonstrable in weeks rather than in days or hours, there is nothing comparable, for teaching purposes, to the visibility of the broken leg...." [4]

Bryant continued: "...Care of convalescent patients has for the most part been left to drive by itself without intensive medical supervision; in consequence, this is almost the only branch of medicine which has made minimal progress in the last fifty years or more.

"It is now authoritatively stated that every city should provide beds for convalescent patients in the ratio of 1:10 acute hospital beds. All cities fall far below this estimate in their provision for convalescents, yet even such homes for this class as do exist are for the most part not used to capacity, and almost none are under the daily care of an interested and experienced physician." [4]

Convalescent homes don't entirely parallel the nursing homes of today, in that they were primarily intended as places where people could recover so that they could return to the community, rather than serving as residential homes for the chronically disabled. Nevertheless, Bryant's observations seem to provide one explanation for the slow progress made in long-term care earlier in this century: care during long-term recuperation from illness and injury was not being made a priority in the education of the physicians of his day or in the education of their predecessors.

Sentiments expressed by an article written in 1915 in a publication called The Nation mirrored Bryant's concerns. [5] Profiling a woman whose philanthropic gift was earmarked for establishing a "hospital for convalescents," the article stated:

Our resources are notably deficient in provision for convalescents. The accommodations of our hospitals are in much demand, and the expense of their maintenance so great, that patients are necessarily dismissed from them as soon as the stage of convalescence is reached; and moreover, it is not in the hospital, but in surroundings of a very different character, that convalescents can receive the benefit of which they stand in special need. Plenty of room and fresh air, and cheery and homelike surroundings, the absence of contant constant supervision and discipline which necessarily prevail in the ordinary hospital. [5]

"Plenty of room and fresh air, and cheery and homelike surroundings"- sound familiar?

Dr. S.D. Doff, director of Special Health Services for the Florida Board of Health, described in a March 1962 Nursing Homes article the "community attitude" that served as the foundation for the "so-called convalescent home of the 1920s and 1930s": "Convalescence had not yet interested the rank and file of the medical and allied professions."' According to Dr. Doff, the philosophy maintaining that "the patient is out of danger-let nature take its course aided by a change of scenery, rest, exercise, diet and tonics" summed up the convalescent care of that era.

Dr. Doff added that, even as recently as 20 years earlier, in the early 1940s, convalescent care did not include special diets, care for cardiac patients after hospital discharge (regardless of their age), provisions for cancer patients (regardless of whether they needed continued medical or nursing care after being released from the hospital) or the care of patients with coloitomies. Also turned awaywere patients in casts or on crutches, patients over 50 years of age who had even slight vision losses, those recovering from brain tumor removal or those with organic neurologic disease.

He quoted a hospital social services director as saying, "No place wants any patient who is not going to fit easily into an established routine. Neither do convalescent homes want crippled or disfigured patients." This social services director had wondered, said Dr. Doff, "if convalescent homes are for those who really need care or only for those who have no particular trouble." [1]

Meanwhile, Back at the Almshouse

The almshouse was still with us through the years of the Great Depression. Conditions had improved little in the years since the Lavinia Docks and the Caroline Cranes and the L.J. Lupinskis had waged their campaigns for change. By this time; Schell wrote, citing a report on the care of the sick in almshouses in New York, Virginia and North Carolina, [2] 62% of almshouse residents were over 65 years of age, and 30% were in need of nursing care, but most were not receiving it. In fact, of27 almshouses studied, only three had trained nurses on staff. According to Schell, the author of the report reemphasized the need for women's organizations to involve themselves in the fight for better care in almshouses. Schell asserted, "The strong alliance between nursing and the women's groups envisioned by Dock and Crane had not come to fruition." [2]

Help Arrives!

Everyone who writes about the history of long-term care points to 1935 as a landmark year, the year when the cavalry, in the form of the Social Security Act, came to save the day. Because the beneficiaries of that legislation did not include the institutionalized, a whole new era in entrepreneurial ventures sprang forth. Privately operated rest homes and nursing homes and convalescent homes popped up like ants at a picnic. Some were good; some were awful. The almshouse hadn't completely vanished yet, but according to Schell, it was on its way out. "...The almshouse began to [die] a slow death. From an estimated high of 135,000 in the early 1930s, the almshouse population dropped to 72,000 in 1950." [2]

Samuel Levey, PhD, and Roger Amidon, MA, in the August 1967 issue of Nursing Homes, [6] wrote, "When the Social Security Act became effective in 1935, technology was accelerating rapidly and social progress was beginning to alleviate the despair of many of the poor, underprivileged and infirm. The availability of public assistance funds spurred the transformation of the traditional patterns of caring for aged parents and relatives. With the shift away from the large, extended, multigeneration unit, families began to place their kin in newly organized boarding homes, nursing homes, rest homes, homes for the aged, and convalescent homes and hospitals.

"Hospital beds and facilities for 'convalescence' and chronic care were not easy to secure, and the owners of many boarding homes were unwilling to lose a major source of revenue by having their 'boarders' transferred to other facilities. To forestall this, the boarding homes quickly employed one or more nurses and evolved into a 'nursing home,' 'convalescent home,' 'rest home,' or whatever category was most appropriate under the state statute. Such facilities began to mushroom across the country with little homogeneity between facilities in terms of services provided." [6]

The "mushrooming" of this hodgepodge of long-term care "homes continued along, fairly unhampered and unregulated, until after World War II, according to Levey and Amidon. Their article pointed out that few laws governing nursing and convalescent homes were instituted before that time, and blamed this lack on "public and official apathy." They wrote, "Sporadic legislation attempted to cure some of the blatant inadequacies, but usually the legislation itself was inadequate and, more often than not, lacking in the necessary force or support of the community and medical and health organizations. Even where strong statutes did exist, personnel to enforce them were frequently unable to manage the large task before them." [6]

Schell called this shift from public institutions to private facilities one institution replacing another." She wrote, "Despite its goal of deinstitutionalization, the Social Security Act inadvertently fostered the transfer of the chronically ill elderly to private and voluntary nursing homes. While the bill was intended to promote a return to home and independence, many people needed the support and care offered through an institution. Commercial nursing homes moved in to fill part of the gap left by almshouses, capitalizing on people's ability to pay for their services with Social Security funds." [2]

The quality of these privately operated homes varied widely. Some were truly "homelike" and some, unfortunately, were run by absentee slumlord types who had little concern for the elderly who lived there, except making sure they got the old folks' money. Levey and Amidon said of the period following passage of the Social Security Act of 1935, "More and more facilities were opened with little or no regard for the economics of supply and demand, but the demand continued because of increasing numbers of aged persons in the population. Converted mansions of depression-poor landlords soon became the landmarks of another era in the care of the aged, and poor financing and capitalization of such ventures frequently resulted in even worse conditions." [6]

The problems were not limited to private homes. The two accounts that follow next, describing two very different county nursing homes, document that quality of care--if there was any care--was wildly inconsistent in the public sector, as well.

The Best--and Worst--of Times

By the 1940s, public awareness of the needs of the elderly and others in need of some form of residential care seemed to be growing, but obviously not at the same rate everywhere. Two accounts written during that decade, describing the care provided at two different county-operated facilities, revealed just how wide that gap could be.

The best of times. The first of these two accounts is a success story, appearing in the American Journal of Nursing in February 1941. [7] Edith L. Marsh, RN, superintendent of the Cuyahoga County Nursing Home in Cleveland, Ohio, described in her article the home's philosophy and the services it offered. She opened by stating her concerns about privately operated nursing homes: "Some [private] nursing homes have graduate nurses to care for their patients. In many, however, the patients are left to the care of persons who are little better off physically. In other homes, women with some practical experience are on duty. Rarely are these patients visited by a doctor. They may be lost from sight until they die, months or years later." [7]

Marsh wrote that the 179-bed Cuyahoga County Nursing Home was opened in February of 1939 (originally with 140 beds) as a result of the Cuyahoga County Commissioners' concerns about--and past experiences With--placing "relief clients" in privately run homes. The County Nursing Home, under the auspices of the County Relief Bureau, was intended for "relief clients who were permanently and totally disabled and in need of the constant attention of graduate nurses, as well as medical care and supervision." [7]

According to Marsh's description, the Cuyahoga County Nursing Home seems to have been advanced for its time. The facility, housing residents from age 23 to 93, a large number of whom were elderly, had a staff of 12 RNs, plus a supervisor of nurses and the director; five more RNs performing "general ward duty"; and a "group of male and female attendants who gave "most of the bedside nursing care under careful supervision." The medical staff included a medical director, two resident doctors and two medical students (plus a visiting heart specialist and neurologist). Residents needing constant care were separated from those needing only custodial care.

Great consideration was given to the residents' hygiene, including regular baths, special attention to foot care and watchful prevention of decubitus ulcers (e.g., "alcohol rubs with a special mixture of glycerine, witch hazel, grain alcohol, and water...followed by an oil rub"). [7]

Marsh wrote that if the "smallest break in the skin" did appear, it was treated with "a spray of tincture of merthiolate and liquor carbona detergent, followed by exposing the break to light treatment," which she said resolved the problem within a day or two. In the 58 years since that article was written, great advances in skin and wound care have been made. But the extent of care Marsh described, administered at a time when some so-called "nursing homes" were little more than holding tanks or boarding houses, seems impressive.

The regular diet for residents of the Cuyahoga County Nursing home, according the 1941 Marsh article, was the same as for the staff, except that some residents received special diets as needed. She said, "We feel a poor cook is an expensive investment, so from the beginning we have had a most excellent chef." Fresh vegetables, potatoes and strawberries were supplied by "a farm project of the Cuyahoga County Relief Bureau." [7]

The Cuyahoga County Nursing Home described in 1941 had a full-time physical therapist, a half-time occupational therapist and a full-time barber. And as for the ladies, the attitude was: "The women like to have their hair waved and their nails manicured, all of which keeps up the morale." Activities abounded, and some residents were even able to man the home's switchboard or serve as receptionists--something that occupied their time and raised their sense of self-worth.

Marsh closed her article by saying, "Nothing is impossible. We find that under carefully supervised medical and nursing care we have actually been able to return 200 patients out of 480 admitted in a year and a half to their homes, and some to their work. Patients who come to us as permanently and totally disabled 'now and forever' have actually been given a new lease on life." [7]

Schell wrote of Marsh's approach to caregiving at the Cuyahoga County Nursing Home: "Some important innovations, now considered standard good nursing care, were part of the program at the Cuyahoga home. The staff gave attention to such problems as maintaining activity, preventing pressure sores, and managing incontinence. Moreover, Marsh entirely eliminated the use of physical restraints at the home...." [2]

These were rather lofty accomplishments in 1941.

The worst of times. A story that appeared in the October 8, 1949, issue of Collier's, [8] "To the County Home To Die," painted a grim picture of life in a county home (if you could call it life) at the other end of the spectrum from the one described above. Gordon Schendel's expose of a county home in Indiana was as bone-chilling as the Cuyahoga County Home story was heartwarming.

In May of 1949, 29 elderly residents of the county home in the Fort Wayne (Allen County) area of Indiana died from "vitamin starvation"--all within five weeks. The Home's physician blew the whistle on its superintendent, alleging that the residents had died because they weren't receiving adequate food after the superintendent had cut back on their meals.

Schendel wrote, "Not since they changed the name 'Poorhouse' to 'County Home' has there been such a sharp demand for an examination of current conditions in these half-forgotten and often neglected institutions, of which there are more than 2,000 across the country." [5]

After the travesties at this county home were uncovered, Schendel, with some resistance from the home's superintendent, got permission to tour the facility. The superintendent's wife led the tour. It is hard to believe, but what Schendel described in his article (see sidebar, "Schendel's Observations") is the after, not the before, picture; the Indiana State Board of Health had already called for drastic changes to be made, and the county commissioners and the superintendent of the Home claimed they had complied. When questioned about the inordinate number of old people who were dying at the Home, one of the county commissioners remarked, "They were old and had to die sometime." [8]

Schendel's article did not say if or when the conditions at the Allen County Home in Indiana subsequently improved, but he did point to two other County Homes in the state where a higher quality of care--and abundant food--were provided. But the problems in Allen County weren't limited to starvation. Dr. Zehr told Schendel, "Old folks need more than food. They need loving care, and hobbies and social stimulus. They need something to keep them interested in life." [8] Schendel's account of his tour dramatically illustrated that the residents of the Allen County Home were receiving none of these.

With such great disparity in quality--such as is apparent from these accounts of the Cuyahoga County Home in Ohio and the Allen County Home in Indiana, and was reported to be the case among privately owned and operated homes, as well--something was becoming apparent. Standards were needed and, along with them, a regulatory staff to convey them to nursing home operators and administrators and to enforce them when they were not upheld.

Enter the Regulations

Maude B. Carson, RN, in a 1947 Public Health Nursing article, wrote about factors that contributed to the rapid growth in the number of nursing homes in the mid-1940s. [9] These included an increase in the aging population, their increased reliance on "Old Age Assistance or pensions," an increase in the number of married women working outside the home, greater economic demands on families and a trend toward smaller homes. Keeping Grandma in the home once she needed care was happening less and less; nursing home populations were growing, and there were still few standards to ensure that Grandma was being well cared for.

In Carson's state (Illinois), sanitary and fire inspections had been conducted since 1944, but in July 1945, further state legislation was passed to improve the regulation of nursing homes. It was called "An Act in Regulation to the Licensing and Regulation of Homes for the Maintenance, Care and Nursing of Persons Who Are Ill or Physically Infirm." The law called for a $25 license fee for nursing homes and defined them as "a private home, institution, building, residence or other place which undertakes through its ownership or management to provide maintenance, personal or nursing care for three or more persons who, by reason of illness or physical infirmity, are unable properly to care for themselves." [9]

An application form, which was provided by the department of public health, Carson said, had to accompany the license fee and had to be signed by "six members of the community, one of whom must be a physician." [9] Excluded from licensure, according to Carson's article, were government-run homes, mental hospitals, acute care facilities, child welfare agencies and maternity hospitals.

Regulated under this new legislation were nursing homes' physical plants; staff; quality of care; patients', attendants' and food handlers' physical conditions; equipment; and records. Inspections were supervised by a sanitary engineer and a registered nurse, who had the ultimate say in whether a home received a license.

Carson wrote that long-term care facilities under this new Illinois law fell under three basic categories: "(1) those that care primarily for recipients of Old Age Assistance; (2) those that house self-paying patients on a weekly or monthly basis; and (3) homes that are supported by religious, fraternal or similar organizations, or by any endowment, and could classify as 'life-care' homes." [9]

Among the "most prevalent deficiencies" observed in the state's initial inspections of 350 nursing homes, according to Carson, were "shortage of qualified personnel to render safe nursing care to patients; overcrowding; faulty plumbing installations that could produce contamination of drinking water through back-siphonage of waste; inadequate records, particularly lack of data concerning personal identification and physical condition; and lack of requirements of physical examinations for patients, attendants or food handlers." [9] She also pointed out a lack of standing orders left by physicians in case of emergencies and said that few homes provided activities for residents; in fact, some didn't even have a living room where residents could congregate and socialize.

Carson emphasized the need for educating and helping nursing home owners and also urged homes to adopt occupational therapy programs.

There was activity in New York State, as well. An article written in 1949 by Joseph H. Kinnaman, MD, MPH, FAPHA, deputy commissioner of the Nassau County Department of Health in New York, said: "A nursing home should be a safe, sanitary private or public medical care facility, operating under health department licensure and having medical services affiliated with the staff of a secondary hospital center." [10] He added, "The goal of nursing home care should be to make available to the patient the maximum opportunity for rehabilitation, and, whenever possible, resumption of a happy, economically useful life in his own home."

Kinnaman wrote, "Few privately operated nursing homes in the area of metropolitan New York presently meet all of the requirements in the [above] definition of a nursing home." He added that they were "rarely, if ever, adequate," and provided "a poor quality of care." [10] According to him, costs to individuals and taxpayers rarely reflected the actual "quality and quantity of care given." His solution? State nursing home licensure for "homes for the aged, boarding, convalescent, and nursing homes."

By 1949, according to Kinnaman, only eight states in the United States had licensure laws governing medical care facilities, and some of them exempted publicly run homes, something he deemed to be an "unsound practice."

Kinnaman advocated that all types of "between the home and hospital" facilities be required to adhere to certain standards and be subject to regular inspections. He also asserted that charges for services should be based on "services actually required at a given time." He recommended that licenses be granted on a probationary basis, which would "reduce the number of illegal operators, make more facilities available, enable the licensing agency to make education rather than enforcement the keynote of supervision, and help to establish the important relationship between cost of care and quality of service." [10]

In a modern-sounding recommendation, Kinnaman suggested that every nursing home should establish a relationship with a hospital and that hospitals and nursing homes should in turn have affiliations with boarding homes for the elderly. He stated, "An affiliation of a nursing home with a hospital makes possible the development of a smoothly operating mechanism for referral of patients from one facility to another. This two-way movement... helps to assure the chronically ill of services geared to need, and is an essential step in freeing hospital beds now occupied by long-term patients who do not require hospitalization." [10]

Also foreshadowing the future--and recalling the past--was Kinnaman's statement that one of the problems facing nursing home operators was their "inability...to secure adequate and qualified personnel, especially nurses...."

The 1950s: Foundation for Growth

Long-term care experts Rosalie A. Kane, Robert L. Kane and Richard C. Ladd stated in their 1998 book, The Heart of Long-Term Care. "In the 1950s, governments made available generous construction loans to encourage development of nursing homes, and the most rapid growth of nursing home stock actually predated 1965 (the year Medicare and Medicaid legislation were passed)." [11] The nursing home business was booming--but was it improving?

In an atmosphere of growing public consciousness about the treatment of the elderly and others living in long-term care facilities, the National Committee on Aging published in 1952, its Standards of Care for Older People in Institutions. The chapter on "Personal and Social Needs...." began:

Older people in homes for the aged and nursing homes have certain characteristics which arise in the aging process.

At the same time, they have the same essential rights and requirements which all people possess: the right to maximum self-determination, privacy of person and thought, and personal dignity. Infringement of these rights, or the failure to provide facilities for exercising them, violates the residents' prerogatives as human beings. [12]

This report from the National Committee on Aging called for what today would be considered a fairly revolutionary--and perhaps hard-to-manage--approach to safeguarding residents' autonomy:

...If a resident is to be helped to function to the full extent of his capacities, he should be free to leave and to return at reasonable hours, except as restricted by his physician's orders.

Residents should be allowed to undertake those normal risks of life which do not involve special dangers to them....Frequent vacations, weekends, or "leaves of absence," arranged after careful planning with all persons concerned, are desirable. [12]

The report added that "the typical dormitory of the early 1900s, with long wards of many beds, little space for daytime living, and no privacy, is fortunately becoming obsolete." [12] The Committee also advocated resident input in matters of programming, improvements to the facility and rules; adequate and flexible opportunities for residents to participate in activities; and community involvement with residents.

Despite all the progressive-sounding measures suggested in this 1952 report, a further examination reveals that the age of long-term care enlightenment had not quite arrived. A section on restraints condoned their use so long as they were not used for more than two hours at a time, were applied in the presence of a physician and used under the continuous supervision of a nurse or doctor. Guidelines for the use of sedation were also included. Long-term care still had room to grow.

In 1952, the University of Michigan held its Fifth Annual Conference on Aging in Ann Arbor. The topic was "Housing the Aged," and a 1954 book reporting on the conference says this subject was chosen "in recognition of the growing interest and concern of many people in finding solutions for this difficult problem." The conference included a focus on [providing] "opportunity for an integrated review of present knowledge about the housing of healthy, frail, sick, and disabled older people." [13]

According to a chapter titled "Nursing and Convalescent Homes," by Edna Nicholson, MS, director of The Central Service for the Chronically Ill of the Institute of Medicine of Chicago, there existed in 1952 at least 14,000 to 15,000 long-term care facilities offering services to the elderly infirm and chronically ill. Apparently, no standardized names had yet been established, as they were still being called "convalescent homes, rest homes, nursing homes, boarding homes, homes for incurables, 'geriatric' or 'chronic' units in general hospitals, infirmaries, sanitariums, health resorts, guest homes, and homes for the aged." [13]

Nicholson stated that because their names didn't clearly define what types of services these variously named facilities provided, they should be categorized according to size; type of building (converted residential home vs. institutional-type buildings); whether privately owned, not-for-profit or government run; age of residents accepted; and types of services provided. [13] She placed particular emphasis on setting nursing homes apart from other residential homes, based on the provision of nursing supervision or care, and warned that many facilities calling themselves nursing homes did not, in fact, provide nursing services at all, while some homes for the aged and other facilities did.

Based on Nicholson's description, the confusion regarding licensing and standards for nursing homes and other residences for the elderly and disabled had not improved much since the 1940s. She wrote: "At the present time, blind, crippled, disoriented, and sick old people are often huddled in so-called boarding homes, where no pretense is made to meet their needs for medical attention and nursing care, and where they have no protection from licensing authorities of standard-setting bodies, and this because the name of the place in which they are living is assumed to indicate that no protection is needed. Even government institutions and voluntary philanthropic homes are guilty of this offense." [13]

This diversity in types of homes and their range of services (or lack thereof arose from the origins of homes and institutions for the elderly in the first half of the 20th century, according to Nicholson. She wrote, "Most of the older homes for the aged were established originally to provide shelter for needy old people who were in good health but had no money to live elsewhere.... Their only recourse was to enter an institution where food and shelter were provided in kind." [13]

Nicholson added that the need for such shelter continued for a number of years, but that a recent growth in pension and insurance systems, along with cash assistance programs, enabled older people to remain in their own homes as long as they were physically and mentally able to do so. Those factors, along with advances in medical care, she said, meant an increase in the numbers of aged with "chronic infirmities" had increased the need for medical and nursing care in nursing homes.

Nicholson hinted in the report at the "continuum of care" so often spoken of today, stating that the immediate needs of older people seeking long-term care would be replaced by the need for "slowly but steadily increasing amounts of care." Because people generally require more care gradually, she urged that "the facilities providing the service be so organized and administered that there need be no sharp break in the provision of care for the individual," adding that "it should not be necessary to admit an elderly person to one home where he can remain only so long as he needs some care but not very much, and then to discharge him from that home and admit him to another when his needs increase. Instead, every home which admits elderly people should provide at least enough 'nursing homey' or 'infirmary' beds to meet the requirements of all the persons for whose care the home accepts responsibility." [13] She also urged that the facility be "homelike," with security and good nursing care.

Another chapter of the University of Michigan report, written by John R. McGibony, MD, chief of the Division of Medical and Hospital Resources, Bureau of Medical Services, United States Public Health Service, dealt with financing of facilities specializing in the care of the elderly. [14]

McGibony wrote, "We cannot rely to any great extent on philanthropies or other charitable resources to take up much more of the load in caring for the aged. Private philanthropy, through innumerable social and religious agencies, has done a magnificent job. But the aging population is increasing, and it appears that the pressure in caring for them will be so great in future years that philanthropy will be able to cope with only a small segment of their numbers." [14]

Several possible solutions might alleviate the growing need for facilities caring for the aged, according to McGibony. First he advocated expanding federal Old Age and Survivors' Insurance benefits, because "if we find an adequate means of financing the care of the chronically ill aged, the question of how to finance the construction of the necessary facilities will pretty well solve itself." [14]

In addition, he recommended promoting more equitable payment for medical care of people on Old Age Assistance: "In some states compensation to institutions is at a level which is commensurate with costs of services. In far too many, such payment is on a cut-rate basis." McGibony also called for the development of "adequate facilities," stating that the Hill-Burton Act in the acute care arena might serve as a model in the long-term care field--not that there should be a "Hill-Burton Act program for the aging," but that the Act might have features that could be applied to long-term care [14] --as, in fact, did occur during the early 1950s.

It is obvious from these accounts written during the 1950s that, while long-term care still had some problems in terms of standardization and regulation, at least those concerned with the care of the elderly and disabled were getting their message out: that it was becoming less and less acceptable to simply park the elderly wherever a bed could be found and call it "caring."

The story of one facility in Tennessee, in the July 1964 issue of Nursing Homes seems to capture the change that was starting to take place throughout the country. [15] The transformation described in the article--from what was known as the Knox County Poorhouse to the Maplecrest Nursing Home in Tennessee--began in 1958, when newly elected County Commissioner William P. Wilson, seeing the horrid conditions at the Poorhouse, sought the money to convert it into a nursing home that would "meet state requirements." According to the article's writer, Peggy G. Savage, RN, he pushed to get the facility remodeled. In 1960, the work complete, Savage was hired as nursing supervisor. [15]

This was no easy prospect, Savage wrote. The place had quite a stigma to overcome, and she had a staff that amounted to "two middle-aged women attendants" when she started. Her description of her first encounters with residents is a poignant glimpse of why change in long-term care was so desperately needed:

Frightened faces peered out from behind doors. Some shouted, some laughed and pointed, and some touched me or grabbed my hand and some ran, while others sat motionless, speechless, and expressionless. Many were bedfast and their limbs were gnarled and crippled from one disease or another.

What these old folks needed was good medical and nursing care, love, affection, kind words and someone who cared whether they lived or died....

At the beginning I spent endless hours talking to patients whose expressions never revealed they had heard my voice. One patient in particular...would turn her face from me when I sat down beside her. Although I had been there several months I had never heard her speak and I was told by other patients she hadn't spoken in years.

Each day I would read to [her] from a picture book for children. Finally she began to face me and look at the book as I would read. One day she said, "pretty flower," and then the battle was over. Tears streamed down her face. Afraid that anything I might say would frighten her, I continued to read.

She took the book from my hands and hugged me.

Her eyes said, "thank you, "and after that the words flowed freely. [15]

Changes were made at Maplecrest in dietary planning, grooming, furnishings, and privacy and activities for residents. Staffing was increased as funds became available. "Individual patient care became our theme," wrote Savage. In 1961, plans were made to add a new building, using federal funds for the construction. Savage worked closely with the architects and, in July 1963, Hillcrest Medical Nursing Institute was born, "an ultra-modern rehabilitation facility for the aged" for 100 intensive nursing care patients and 50 supportive care patients, bringing the total, including the original Maplecrest beds, up to 230. Savage became its administrator.

Hillcrest had many features equivalent to those one might find in a well-equipped and well-staffed nursing home of the 1990s, including sun parlors, "large, bright, airy" living rooms with fireplaces; a full-time medical director [previous to 1958, a physician visited twice weekly] and consulting physicians, therapists and other medical personnel; around-the-clock nursing; specially designed showers, toilets and drinking fountains; automatic bath lifts, adjustable-height beds and other equipment; physical, occupational and recreational therapy; and much more. [15]

One noteworthy program at Hillcrest was its training program for geriatric nursing assistants. Because the facility was having the age-old problem of finding well-trained staff, application was made to the Tennessee Employment Security for assistance, and funds for a training program became available through the Federal Manpower Development Training Act. With the cooperation of the State Department of Vocational Education, a training program was initiated. [15]

According to Savage, "The program, the first of its kind in the nation, [would] create a nursing level between that of a nurse's aide and a licensed practical nurse." [15] When successfully completed, the 20-week course (220 hours classroom theory and 540 of clinical training) conferred the title on its graduates as "Certified Geriatric Nursing Assistants."

The 1960s: A Decade of Change

The 1960s weren't just revolutionary in terms of music and hairstyles and fashion and political unrest. The times "they were a-changin"' in long-term care, as well. Before 1967 was dubbed the "Summer of Love" for the young, 1965 could have been called the "Spring of Hope" for the old, with the passage of Medicare and Medicaid legislation.

Although aimed at improving healthcare accessibility to older people not covered by private health insurance--and not intended as a cure for the ills of long-term care--Medicare did make provisions for limited posthospital rehabilitation and skilled nursing care. Medicaid, which according to the authors of The Heart of LongTerm Care was "enacted almost as an afterthought to Medicare," was designed to cover healthcare for the poor of all ages. [11] They added, "Medicaid benefits were shaped by Medicare's omissions.... No one at the time... anticipated that Medicaid might become the major payer for a dramatic Medicare omission, namely, long-term care in nursing homes."

According to these experts:

The sleeper in the Medicaid program was a provision that permitted but did not require states to include the "medically needy" among those eligible for the program, meaning persons who became poor because of their high medical costs. When medical bills exceeded a state-determined percentage of monthly income, such bills could, at state option, be covered under a 'medically indigent' provision. In a number of states, this eligibility criterion became the major vehicle for coverage of older persons with heavy health care expenditures because of nursing home care. [11]

As mentioned earlier, "the most rapid growth of nursing home stock actually predated 1965," [11] contrary to the popular perception that the big, sudden boom began after that year. According to statistics presented in The Heart of Long-Term Care, the number of nursing homes rose steadily (but not dramatically) until 1971, fell that year (possibly because of a tightening of standards), and then climbed gradually again until 1995.

Sweeping Reform...At Long Last. Despite lawmakers' intentions in passing the Medicare and Medicaid legislation in 1965, the government involvement they brought with them to the long-term care arena ultimately triggered increased scrutiny of the industry. From The Heart of Long-Term Care: "Medicare and Medicaid did more than stimulate the growth of nursing home[s]. The programs influenced the very nature of nursing homes through the rules that facilities needed to comply with to become certified to receive payments." [11]

Until Medicare and Medicaid, the for-profit component of the long-term care industry had been growing steadily, but perhaps without much in the way of growing pains. Some owners and operators, certainly, provided the best care they knew how, given the level of knowledge and technology available to them. Others were out to make a buck on the backs of the elderly. Quality of care continued to be all over the board. Now, though, it was time to pay the piper.

Levey and Amidon wrote: "The industry of providing patient and resident services for the aged was expanding at a tremendous rate [after the Social Security Act of 1935], largely without any real professional credos and responsibility or standards for care and for the physical facility. Sporadic legislation attempted to cure some of the blatant inadequacies, but usually the legislation itself was inadequate and, more often than not, lacking in the necessary force or support of the community and medical and health organizations. Even where strong statutes did exist, personnel to enforce them were frequently unable to manage the large task before them...." [6]

Levey and Amidon went on to say that the passage of Medicare and Medicaid (two years before the article was written) had rendered the future of nursing homes "more promising than everbefore." They asserted, "...The Social Security Amendments of 1965 will serve to focus new attention on nursing homes throughout the United States, and increased standards will prevail." [6]

Those were prophetic words.

1980s to the Present: The Legislative Onslaught

Perhaps the most notable vehicle for nursing home reform in the 20th century, the Omnibus Budget Reconciliation Act of 1987 carried within it nursing home reform legislation of unprecedented scope. With OBRA '87 came federal and state government scrutiny of nursing home residents' quality of life, a degree of government oversight that had been lacking--many would say sorely lacking--throughout the century. Those resident rights that had been described decades before resurfaced; resident assessments were described, and prescribed, in detail; and a system for government inspection and enforcement mandated.

Why had such sweeping measures not been taken earlier? The authors of The Heart of Long-Term Care wrote: "Although the disadvantages of hospital-like accommodations with their crowding, shared space, and rigid routines in a dwelling place were well understood early on, states were reluctant to impose different regulations for the nursing home environments, both because of the lobbying power of the nursing home industry and because they would have been left paying for the presumed higher cost of doing business for their Medicaid residents." [11]

Whatever the case, nursing homes could and occasionally did take a perverse pride in describing themselves as the "second most regulated industry in the country," following nuclear power. Cross-currents were set up within facilities, toward reformed care on one side and toward staff demoralization on the other--a conflict that has yet to be resolved. Meanwhile, throughout the 1990s, government agencies ranging from the Office of the Inspector General (Health and Human Services), to the Occupational Safety and Health Administration, to the Department of Justice bore down on the industry with intense and alarming scrutiny.

The Balanced Budget Amendment of 1997. The 10th anniversary of the OBRA legislation witnessed another legislative blow to the industry: the Balanced Budget Amendment of 1997. The advent of Medicare and Medicaid had, even if inadvertently, launched the "boom days" of public money to fund long-term care. Medicare, however, had not been a major contributor to long-term care revenues until the advent of post-acute care in skilled nursing facilities during the '80s and '90s. This seemed to be the new growth opportunity for many nursing homes. Now, though, the pendulum was about to swing the other way.

The Medicare Prospective Payment System (PPS), one of the offshoots of the Balanced Budget Amendment, has become the key issue affecting the survival of many of the larger for-profit long-term care companies, a few of which have already been pushed to bankruptcy. Many would add that, in tying major federal budget savings to cutbacks in Medicare spending, the BBA represents a giant step backward in nursing home quality of care. The jury is still out on the potential impact and possible remedies regarding PPS, but most experts in the field say that changes must be made if the quality of long-term care is to continue improving on into the next millennium.

Trends That Transcend the Years

Some unmistakable trends are obvious when one looks at the past 100 years of long-term care--and one pattern stands out above them all: Change has never come easily--or quickly--when this country has addressed housing and caring for its elderly citizens. For example, decades passed between the time when Lavinia Dock and her fellow crusaders pointed out the need for professional nursing in almshouses and the time when nursing services were routinely provided. Talk of "standards" and "regulation" preceded any sort of universally adopted standards and regulations by at least 40 years. Most experts agree that the problems of long-term care financing have never been forthrightly addressed. In short, it seems to have taken a very long time for the "voices crying out in the wilderness" of long-term care to reach the ears of the public, and many more for the public (and its elected officials) to heed their call.

Another trend revealed by a "good look back over our shoulders" is an unrelenting concern about getting and keeping good staff. From the very beginning, those who have cared about the care of our elderly and disabled have advocated for better training and noted that staffing shortages have been caused, at least in part, by inadequate wages.

Certainly not all the trends have been negative. Religious and ethnic groups and charitable organizations stepped up early on to fill the needs of the elderly in their particular communities, and the not-for-profits of today continue in that tradition. For-profit rest homes, boarding homes, convalescent homes and nursing homes have, by definition, been driven by the profit motive, but some have long operated on the concept of value for dollar received and endeavored to provide the best care they knew how to give. The exceptions, though, have been horrendous, and have brought the industry to its current state of regulatory micromanagement and poor public esteem.

Another positive aspect of this history is the obvious social concern and awareness expressed throughout the decades concerning the needs of the elderly. Since the first decade of the 20th century, advocates for the aging and aged have pointed out the need to provide a safe, "homelike" environment, nutritious food, sanitary conditions and activities that inspire a will to continue with life. And there has long been a demand, though not universally heeded, to treat older people with dignity and respect.

As the year 2000 dawns, the heroes of long-term care will continue to be the administrators, nurses, nursing assistants, housekeepers, maintenance workers and others who heed the call to caring, who work hard to provide the best possible care for the oldest, and sometimes most frail, members of our society. As headlines shout about what's wrong with long-term care, these heroes will continue to quietly carry on, walking in the footsteps of those who labored before them, working to live up to what's been the best about long-term care and fighting against considerable odds for change where it's needed.

The Lavinia Docks are still with us.

References

(1.) Doff SD. No drums-no trumpets. Nursing Homes, March 1962, pp. 30-31.

(2.) Schell E. The origins of geriatric nursing. Nursing History Review I, 1993, pp. 203-16.

(3.) Walsh JJ. The care of children and the aged. Catholic World, Oct. 1916, pp. 56-65.

(4.) Bryant J. Convalescence I. A Chronological Review, to 1878. Reprinted from the Boston Medical and Surgical Journal (By the Sturgis Fund of the Burke Foundation for Convalescents) November 9, 1922.

(5.) [no author]. The Nation, Dec. 2, 1915, pp. 645-6.

(6.) Levey S, Amidon R. The evolution of extended care facilities. Nursing Homes, August 1967, pp. 14-19.

(7.) Marsh, EL. The care of the chronically ill. American Journal of Nursing, February 1941, pp. 161-6.

(8.) Schendel G. To the county home to die. Colliers, Oct. 8, 1949, pp. 22-3, 62-4.

(9.) Carson MB. Improving standards in nursing homes. Public Health Nursing 1947;39:312-14.

(10.) Kinnaman JH. The nursing home-A medical care facility. American Journal of Public Health and Nation's Health 1949;39:1099-1105.

(11.) Kane RA, Kane RL, Ladd RC. The Heart of Long-Term Care. New York: Oxford University Press, 1998, pp. 34-48.

(12.) National Committee on Aging. Standards of Care for Older People in Institutions, Section I. 1952, pp. 10-46.

(13.) Nicholson E. Nursing and Convalescent Homes. In: Donahue W (ed). Housing the Aging. Ann Arbor: University of Michigan Press, 1954, Preface and pp. 9-11; 120-31.

(14.) McGibony JR. Financing Sheltered Care and Medical Facilities for Older People. In: Donahue W (ed). Housing the Aging. Ann Arbor: University of Michigan Press, 1954, pp. 170-80.15. Savage PG. It's No Longer Over the Hill to the Poor House. Nursing Homes, July 1964, pp. 7-10; 20-21.

Schendel's Observations

"She [the wife of the County Home's superintendent] took me first into the women's sitting room. It was big and barnlike--no rugs, no pictures, no drapes, nothing to break the blank cheerlessness of the rows of wooden rockers and straight-backed chairs. They were occupied by some 60 elderly ladies, so emaciated that they looked like concentration-camp inmates.

"It seemed more like a waxworks exhibit than a roomful of people, for there was no movement, no buzz of conversation....List-lessness, Dr. Zehr [*] had said, was an indication of malnutrition."

[Describing the men's wing]: "Here was the same sort of sitting room, but less attractive than the women's parlor, for it was a basement room, with a cold concrete floor and windows too high to afford a view...At least 50 men were sprawled listlessly on the benches."

"...I wanted to see what dinnertime looked like under the improved conditions the newspapers had mentioned. ...Seventy-five old men were lined up...silently awaiting the gong. It rang, and the line erupted into the room. There were a dozen or so small tables, each set for six. As soon as a man was seated he served himself to noodles and mashed potatoes from two big bowls in the center of the table. Then he hunched over his plate, eating ravenously, ignoring his neighbors. There were two slices of bread at each place and a tin cup of black coffee."

"Later I discussed the 'improved' food situation with Dr. Zehr. His view was that there had been little improvement...."

[Quoting a nurse who was on duty at the hospital during the time of the 29 deaths "We were kept busy trying to calm the patients, she said. `They got nervous and excited when they heard the undertaker's heavy cart rumbling in the corridors. This had been happening practically every day, but when it occurred three times in a hour, they got a bit agitated."

(*.) Dr. Zehr was the home's former physician, forced to resign when he brought to light the abuse occurring at the Allen County Home.
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Date:Dec 1, 1999
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