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.