IOM II: No Data, Few Conclusions--No Apologies.

Sixteen years ago, the Institute of Medicine (IOM) of the National Academy of Sciences issued a report on the "status of long-term care" that attacked the competence, caring and credibility of nursing homes. The IOM is a nonprofit organization rather than a government research agency, but a congressional charter and prestigious membership generate powerful influence for the Virginia-based "think tank." As a result, despite complaints that the IOM long-term care study was based on biased selection of old data, its 1986 recommendations were adopted wholesale as today's OBRA regulations.

The IOM issued a new report at the end of 2000 on the Status of long-term care. This IOM II concludes a 3-year review, funded primarily by private sources rather than the IOM's usual congressional sponsorship. The political climate of its release also is very different: Instead of a Democratic Congress fighting the Reagan administration for the right to regulate, IOM II appears on the eve of a moderate Republican administration presiding over a more conservative Capitol Hill. Nevertheless, as the release date neared, many in the industry braced for a new round of regulatory recommendations from the IOM.

What emerged from IOM II was anticlimactic. The IOM reports that it cannot even assess the quality of care provided by the industry. IOM II states:

...it is easier to propose a comprehensive examination of long-term care than to identify, collect, and analyze relevant data sufficient to support comparable descriptions and assessments across the diverse settings, services, and populations.... The result is that very little is known about the quality of care and outcomes in settings other than nursing homes. What information is available often is not comparable, and does not take into account how people perceive their experience of long-term care.

The report pleas for research studies that would make it possible to support rational policy choices. It concludes with a tip of the hat to long-term care providers "trying to do their work well and responsibly, often under difficult circumstances, and understaffed with low compensation."

Although the IOM is no longer confident in its ability to diagnose the ills of long-term care and prescribe a booster dose of regulation, the new report continues to advocate "reform" in the field. This time, the IOM is calling for "consumer-centered care," with a focus on "the needs, circumstances, and preferences of people using care." Even in this tepid advocacy, the IOM cautions that "consumer-centered care is not a simple concept that can be defined and interpreted in an identical fashion for all those using long-term care services under all circumstances." The bottom line is that long-term care should focus on changing business practices and reimbursement patterns rather than on regulation.

This defanging of the IOM as a regulatory tiger resulted from several realities and trends, in addition to a changed political climate in Washington. Most importantly, the committee responsible for the 2000 report had more representative membership than the reviewers of the 1986 IOM long-term care study; i.e., one member actually works in the long-term care industry (a Manor Care vice-president). Neither group offered, in fact, fair representation of the industry, but at least the members of the IOM II panel were willing to question conventional biases and require a fair assessment across all settings.

This desire for fairness was noticeably absent from the 1986 IOM report. Throughout that document, there is a clear bias that chronically ill people enjoy a better quality of life in their own home or in their family's community than in an SNF. At that time, no one bothered to study the quality of life in community settings"; IOM members assumed that no one really preferred to leave his home. In IOM II, the members wanted to make research-based comparisons among nursing homes, assisted living and other types of settings and, therefore, looked for research on quality of life in community settings as a baseline. The data do not exist for the simple reason that no one regularly surveys the conditions in which chronic patients live at home or in the community. Federal and state governments do not meticulously record whether the elderly live in wheelchair-accessible quarters in their children's home, or inspect to ensure that the chronically ill receive enough mental stimulation and social interaction at home. As stated by the authors of IOM II, the availability of data on SNFs "reflects, to a large extent, the concentration of public expenditures in the nursing home setting and the monitoring of that spending to ensure accountability."

The unstated issue in IOM II is that comparisons of nursing homes versus assisted living versus "community settings" might not be a valid approach to understanding the realities of long-term care. The choice of residential setting probably has less to do with "consumer preference" than with medical, economic and social realities. However, even when consumer choice is involved, there is no inherent benefit in "community living." A widowed, chronically ill resident on a fixed income probably suffers an inferior quality of life living alone in a crime-ridden neighborhood compared with living in a well-run, caring group facility. In fact, the most recent research on the psychology of aging finds that both physical and mental health among the very old are affected more by the quality of interaction with other people than by residential setting. Despite the IOM's claims, these types of differences are not difficult to measure; they are, however, costly to research because the necessary data come from interviews an d surveys rather than from HCFA inspection findings.

The long-term care field will be poorly served as long as the IOM and other institutions involved in policy research insist on comparing the apples and oranges of SNFs, assisted living, group homes and other settings. Despite the distortions imposed by regulations and reimbursement patterns that discourage nursing home stays, some people lead happier and healthier lives in group settings. Perhaps the time has come for Washington policymakers to accept that a nursing home is as much of the community as the so-called "community settings," and should be studied in those terms. In that way, we will finally focus on what the elderly need to live fuller and richer lives in long-term care regardless of where they live.