Cherished myths vs. stubborn facts

Myths, legends, proverbs, and folklore—every nation, community, and profession uses them to dress up its history, filter reality, and color facts. These social figments serve a purpose: They make us proud and patriotic, keep us motivated and committed, mask our ethnocentrism, justify our way of life, and spare us unsavory reflection. They are also handy tools to stereotype “strange” behaviors or to denigrate and devalue threatening ideas.

Beliefs and folklore—from benign to malignant—permeate all aspects of modern healthcare, nowhere more so than in long-term care, and nowhere as negatively as in nursing home care. Cumulatively, stereotypes about eldercare exert a formidable impact. They fuel advocacy campaigns, color media coverage, influence consumer behavior, provide ammunition to trial lawyers, and shape government policy and regulation.

One myth is common among advocates, researchers, and regulators focusing on long-term care: They see themselves as protectors of vulnerable nursing home residents, and so they promote policy and regulation zealously on their behalf. Evidence, however, shows that residents and their families are sophisticated stakeholders—they know precisely what quality means to them, and what they desire and yearn for differs vastly from what regulators enforce in the name of ensuring residents' well-being. More on that disparity in a moment.

A second myth further attests to a serious divide between these two camps. The long-term care elite contend that care providers can too easily manipulate the perceptions of residents and families. In their view, customer satisfaction surveys do not measure up as a tool for quality improvement or enforcement. And yet research findings unmistakably all point to the opposite conclusion.

From the long list of questionable but fondly held positions about nursing homes, we dwell on one generic stereotype that provides the backdrop for most others.

“Don't Make Me Go!”

A universal, but skewed, perception holds nursing homes in low public regard. Even physicians and nurses working in nursing homes enjoy hardly an enviable status compared with their colleagues in other settings. Being a resident in a nursing home carries even less appeal.

An older relative's active resistance puts the family in a serious predicament when, faced with no better option, they decide to place their relative in a nursing home. The resistance, in the form of noncompliant, life-threatening behavior, may amount to passive suicide. Research shows that many elderly sink into severe depression when a nursing home placement becomes imminent—and not a few commit active suicide in anticipation.

Relatively speaking, we do not dread the thought of being hospitalized. We expect to be cared for by highly trained physicians, be cured with their high-tech procedures, and be “back in the saddle” after a brief hospital stay.

Why is a nursing home different? It is an unwelcome reminder that “my world is steadily shrinking as I gradually lose my social roles, influence, health, and mental agility. It is an open admission that my family is unable to care for me at home, and that the best I can expect is that the nursing home will help manage my ailments, not cure them. The nursing home is likely to be my final move.” After all, one in four Americans dies in a nursing home and, in some states, half of all deaths occur there.

Is it unreasonable then that we harbor fearsome thoughts about nursing homes? Are not our mental constructs about hospitals or nursing homes grounded in experience? Are not our trust and confidence in hospitals duly earned, and our skepticism about nursing homes merited?

Or are our beliefs in large part fiction spilling over into mythology? Or put another way: Are our perceptions about hospital and nursing home care evidence-based?

Let us apply a simple yardstick: the outcomes of care.

Quality of Hospital Care

Among the achievements of the consumer age has been the demystification of the sacred, the mysterious, and the forbidden, whether in religion, politics, or professions. Healthcare is no exception—it has moved away from “doctor knows best” to “buyer, beware.” Recall these developments over the past few years:

1994.Harvard professor and physician Lucian Leape, MD, made headlines with his research concluding that medical errors are by far the number one problem in healthcare. Some of his findings:

  • One of every 200 hospital patients die because of a hospital error.

  • If the nonmedical field made one-tenth the errors a hospital intensive care unit makes per patient per day, we would be shocked by the enormity of the problem. For example, two planes would make unsafe landings per day at Chicago's O'Hare International Airport, 16,000 pieces of U.S. mail would be lost every hour, or banks would deduct 32,000 withdrawals from the wrong account every hour.

2000.A federally financed Institute of Medicine (IOM) research panel concludes that hospitals kill 98,000 patients a year. That means more people die in a year because of medical errors than from motor vehicle accidents (43,458), breast cancer (42,297), or AIDS (16,516).

2000.The Journal of the American Medical Association (JAMA) reports that 12,000 patients a year die from unnecessary surgery; 7,000 die from medication errors in hospitals, 80,000 from infections in hospitals, 20,000 from other errors in hospitals, and 106,000 from non-erroneous but nevertheless adverse effects of medications—a total of 225,000 deaths a year, making healthcare the third leading cause of death in the United States.

Quality of Nursing Home Care

In contrast to hospitals, nursing homes are inspected by state surveyors every year and may be cited for deficiencies regarding noncompliance with state standards.

Some rather telling recent events:

1997.A lawyer makes allegations before a congressional committee that 3,113 residents died in 971 California nursing homes in 1993 because of malnutrition, dehydration, and improper care. The General Accounting Office (GAO) examines a sample of 62 medical records of the allegedly avoidable deaths and finds that 34 residents received unacceptable care that endangered their health and safety. Since autopsy information was unavailable, the report suggests, the cause of death could not be determined. GAO also stated that the findings could not be generalized to the universe of all nursing homes.

2002.GAO reports that while approximately 20% of the nation's nursing homes are cited for deficiencies involving actual harm or immediate jeopardy to residents, state survey officials appear to be confused about the definitions of “actual harm” and “immediate jeopardy.”

2006.My InnerView, a company that promotes evidence-based approaches to long-term care quality, releases survey results involving 70,966 residents and families of residents—11% of respondents were residents and 89% were residents' families—in 2,224 nursing homes in 50 states. Of the total residents responding directly or through their families, 64% had lived in the nursing home for at least one year. Thirty-eight percent of families visited the nursing home daily, and an additional 48% visited at least once a week. These residents with a long personal experience of nursing home life and visiting families observing caregiving at close range were asked to judge their nursing home. Asked about their overall satisfaction with the facility, 52% described it as “good” and 31% as “excellent.” Would they recommend their nursing home to others? Forty-eight percent would recommend it as good and 35% as excellent. These numbers have been validated repeatedly in many separate surveys in many different settings.

These scientifically obtained results concerning outcomes of care in hospitals and nursing homes are representative of research discoveries in the literature. They point out that despite the vastly positive public image hospitals enjoy and the negative image nursing homes suffer, neither image is justified by factual evidence.

Nevertheless, even scholars can succumb to popular beliefs and prejudices. Consider the 1997 GAO report cited above on deaths alleged to have resulted from poor care in nursing homes but were unsubstantiated. JAMA discussed that report under the suggestive title “Unacceptable Nursing Home Deaths Unautopsied.” But the researchers who authored the 1994 IOM study revealing 98,000 hospital-caused deaths a year entitled their report “To Err Is Human.”

Medical Sociologist who has been a university professor, researcher, and author in the long-term care field. He is a Vice-President of My InnerView, based in Wausau, Wisconsin, which promotes an evidence-based approach to quality in long-term care.

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