Our schizoid approach to long-term care.

If as an outsider you looked at long-term care with a sociologist's eye, you would be struck by a curious social fact. Nowhere else in healthcare would you find so deep and wide a gulf between what customers say they want and what the system says they should have.

"I care for 115 seniors--I can't think of a more rewarding calling," a nurse manager told a researcher recently. "But I can't take it anymore. They have robbed me of my professionalism, turned me into a compliance officer, and taken me away from the bedside. I dread coming to work for fear I may be named in a liability suit at any time."

She was referring to the face-off in long-term care between two opposing camps. A loose coalition of regulators, privileged researchers, professional advocates, and a special set of trial lawyers (we'll refer to them all as the "Definers"--you'll soon learn why) are arrayed against an amorphous group composed of providers of care, frontline caregivers, residents, and their families (whom we'll call the "Front Liners").

Although both sides embrace and advocate a common goal, each looks askance at the other--not in symbolic or friendly rivalry, but in an adversarial stance that runs the gamut from all-out hostility displayed by some trial lawyers, a studied indifference between providers and state surveyors, and passive (sometimes confused) silence among families of residents.

The antipathy feeds on two simmering issues. First, what is at stake here is not a small prize. It is as momentous as the answer to a seemingly simple question: Who decides what is long-term care quality? The one who controls that definition also gets to spell out the standards of care, prescribe the process of care, and dictate how care should be monitored and how its outcomes should be measured.

Second, if truth were told, there is no real contest here. The Definers have ruled the day from the start. Their lobbying notwithstanding, the providers and the caregivers have been edged out of involvement in the early phases of the legislative process and have been confined to the role of recipients of established policy, not of partners in shaping it.

In this winner-takes-all match, the Definers even shape the framework and the agenda of the national discourse. Many of us unknowingly bow to it as received wisdom, unquestioningly accept its principles, and hold as self-evident its untested assumptions:

* Quality is measurable.

* What cannot be measured cannot be objective.

* If you cannot find it in a juried research publication, it does not deserve serious attention.

* Numerical data surpass qualitative findings in scientific value.

* The more sublime your statistics, the more solid your proof.

* Experts grasp the nature of caregiving better than those engaged in it hands on.

It turns out, then, that the fault line in long-term care is not a mere research curiosity; its results radiate throughout long-term care. Thus, for example, the Definers' partisan distrust and privileged association with legislators have lured them into behaving as an elite--a select group, convinced that the exceptional abilities of its members confer on them a special status and add more weight and authority to their conclusions, pronouncements, and mandates.

This elitist approach has had far-reaching consequences. On the positive side, its stern and rigid mandates have effectively cleansed the profession of many of its entrenched and unscrupulous elements. But the approach has also left in its wake too many excellent providers discouraged and dispirited. Stringent regulation aimed principally at delinquent providers has lacked the sensitivity to tell mediocre providers apart from the exemplary ones. Regulation has sought to discipline the former by requiring accountability that is ever more detailed. Many committed caregivers resent that such punitive legislation is undeservedly applied to them at a heavy cost. It devalues their professionalism and achievements, makes innovation risky, shifts their focus from achieving excellence to ensuring compliance, diverts resources from direct care to superfluous documentation, and offers trial lawyers yet another area to fish for liability lapses.

Consider how the elitist methodology has come up short in the several national initiatives to devise ways to improve quality in nursing homes--like, for example, the development of QIs and QMs. These projects, pursued at considerable cost, involved regulators, researchers, consultants, and many prominent names in long-term care. All projects were meticulously planned, followed strict protocols, and invited experts from every relevant group to serve on clinical, advisory, and other panels. But the methodology fell short on one crucial count.

Tellingly, in most instances, the selection of participants sidestepped one important constituency, the one closest to, most acquainted with, and best experienced in matters central to the project. Their rosters of panelists did not list any nursing home directors of nursing, nursing staff, CNAs, residents, or their families. (Professional advocates supposedly represented the residents, and sometimes administrators represented nursing homes.) These immediate creators, beneficiaries, and customers of quality were not deemed experts, by elitist definition. In effect, they were shut out of deliberations on the very policy agenda that would address their life and work.

Ponder another case where the preoccupations of the Definers have run tangential to the interests of the Front Liners. Definers have pursued with zeal the matter of staffing ratios, contending that good care requires more staff than profit motive allows. The issue has broad appeal. Congressional hearings, scholarly analyses, and presentations at conventions--all these have raised it to a priority status.

In all these settings, however, one question has rarely been raised: How do residents and families view the staffing problem? Where does it appear on their list of priorities?

A hint of an answer first surfaced in the landmark study that the National Citizens' Coalition for Nursing Home Reform (NCCNHR) conducted in 1985, but it was not systematically pursued. Researchers asked residents in 105 nursing homes in 15 cities what "quality of care" meant to them. "Good staff is quality," they told the researchers clearly and repeatedly. The study revealed that residents were concerned primarily not whether their nursing home was adequately staffed, nor whether the staff were competent, but first and foremost, whether the staff connected warmly with them, treated residents with courtesy and respect and, in word, deed, and demeanor, affirmed the dignity and individuality of residents.

A 2006 study confirmed these NCCNHR 20-year-old findings. A poll asked 728 nursing home residents and 3,750 families in a northern state how satisfied they were on 22 quality issues. Residents and families expressed their greatest satisfaction with the caring and respectful way in which staff treated them. At the same time, they registered their displeasure that their nursing homes had insufficient staff and gave this item their lowest satisfaction score.

The researchers probed deeper, searching for issues that stirred residents and families deeply enough to influence how they recommended the facility to others. They unearthed two items, namely, the caring attitude of staff and staff competency, as the strongest motivators influencing their recommendations. True, when the nursing home was understaffed, residents and families clearly registered their dissatisfaction--but adequacy of staffing, as an issue, was not a leading motivator. Indeed, it came in last, behind every other item, as having the least power to influence families' and residents' recommendations of the facility.

If Definers and Front Liners disagree whether adequate staffing should be a prime concern, the question arises: How well does each side keep its antennae tuned in to ground zero, the bedside, where nursing home quality is born and sustained? One expects that Definers would take the well-beaten road traversed by experts--keep abreast of studies, test hypothesis, have your findings juried by peers.

As for families, any quality-related issue is evocative and personal. More than half of them shop around before placing their relative in a nursing home; three in four visit their relative either daily or weekly. They witness nursing home life unfiltered and see the staffing problem in its true light. It is clear to them that the size of the workforce has to match the amount of work to be done. However, the quality of life that they desire for their relative, they will attest, depends less on the number of staff assigned to the task, and relates more to the kindness, caring, devotion, and commitment of the caregiver. Why else would many government-run or unionized nursing homes, which are generously staffed and have stable workers, nonetheless trail behind others in quality outcomes?

Clearly, like staffing, every question in long-term care is a potentially polarizing issue. On most questions the two groups find themselves on the opposite side of the divide, each aboard its own quality-bound train pulling out of its own terminal headed in a different direction, each confident that they have chosen the best route to reach one and the same common destination. Some signature discords:

* Quality of life vs. quality of care

Front Liners: The goal of a nursing home is to create a quality of life for the residents.

Definers: State surveys assess nursing homes using QIs that measure quality of care.

* Achieving excellence vs. compliance

Front Liners: The performance goal should be excellence. The system should expect, encourage, and reward excellence.

Definers: The State Operations Manual sets and expects compliance with minimum standards. Surveyors cite and penalize deficiencies based on them.

* Two models for monitoring performance

Front Liners: The "community policing" model would encourage, teach, and motivate "good citizenship."

Definers: The state survey process is built on the "highway traffic cop" model: "surprise them," "trap them," and "cite them."

* Outcomes vs. process

Front Liners: Expect good outcomes, de-emphasize paper compliance, promote innovation. The MDS, in fact, demands maximum data.

Definers: The MDS is a professional protocol that is objective and uniform across nursing homes and should be adhered to.

* Customer desires vs. state mandates

Front Liners: Customer desires and satisfaction should play a bigger role in assessing nursing home performance.

The Definers: Customer satisfaction reflects what is, not what is possible. Customer satisfaction data are malleable and "soft."

Conclusion

The peculiar history of long-term care has made the field a showcase of paradoxes, dilemmas, and antagonisms. The face-off between Definers and Front Liners points to the deep fault line that lies at its heart. It is so much a part of our life that, despite its serious consequences, we give little thought to the outrageous irony that in long-term care, more so than anywhere else, what caregivers/care-receivers desire and what the system mandates are not the same thing.

V. Tellis-Nayak, PhD, is a Medical Sociologist who has been a university professor, researcher, and author in the long-term care field. To send your comments to the author and editors, e-mail [e-mail].

BY V. TELLIS-NAYAK, PHD