"If I ask people if they would rather spend a year in a minimal security prison or in a nursing home, I get a 50-50 response" says Art Caplan, the Director of Bioethics at the University of Pennsylvania. In a recent article by Mattimore et al. (JAGS, 1997, no. 7), 3,262 seriously ill hospitalized adults were interviewed about their attitudes towards nursing home placement and more that half stated they were unwilling to be admitted to a long-term care facility (with more than 30 percent saying they would rather die). In 1996 the Institute of Medicine noted that "the quality of care provided by some nursing facilities still leaves much to be desired." Is it an ethical issue that nursing homes continue to have this dismal reputation, as places filled with unhappy residents, despite the efforts of the Omnibus Reconciliation Act and the intensive annual state inspections?

The nursing home setting cannot be held responsible to the extent that people are unhappy because they can no longer live independently, have suffered multiple losses or are burdened by difficult diagnoses such as Alzheimer's Disease. Such are the vagaries of life. However, to the extent that residents suffer depression because they feel they are ignored, disrespected or have lost control over their environment, it may well be the long-term care industry who must bear the responsibility. Excessive regulation can divert long-term care workers from their primary task of giving care to individuals who are frail and dependent in order to carry out other chores necessary to keep a facility "in compliance." The Institute of Medicine charges that an unresponsive Medicaid reimbursement rate fails to acknowledge that incoming nursing home residents are often gravely ill and require much more intensive care than did their predecessors and that this situation is an invitation to abuse. Finally, and perhaps most fundamentally important, the Omnibus Reconciliation Act correctly mandates that quality of life be the foundation of all regulation in long-term care. Yet it offers mainly proscriptions in such forms as Resident's Rights but few real prescriptions on how this goal can be realized.

Quality of life is a difficult concept to quantify because each person has his/her private version. Yet there are ways to determine and document the ingredients necessary for improving quality of life. One such way is to determine a resident's value system which is integral to each personality, shaped by life's experiences and played out as a panoply of preferences. People can be (and probably often are) interviewed on admission to a nursing home about such preferences and if there preferences become an integral part of the care plan they can serve to mitigate the medicalized routine of the nursing home. Yet how often is this done in actual practice? If Mary is a devout Catholic who feels that her life is incomplete without attendance at Mass should this priority be subjugated to a regimented bathroom routine?

It is true that these values can conflict with the value system of the institution and/or its workers causing ethical conflicts to arise (as when staff "protects" a resident from undue anxiety by suppressing the full truth about a given situation which then prevents the resident from making a fully autonomous decision). However this is not a reason to avoid the process of doing a values interview at regular intervals for residents in long-term care. Such inventories have already demonstrated their worth as an adjunct to end-of-life decision making, witness the Values History developed by Joan Gibson. Arguably, having ones values respected in everyday life can have equal or greater benefit for a resident, for end-of-life choices are often made only once compared to the myriad of choices that come before that.

Rosalie Kane argues that "everyday" ethics of nursing home life are often subjugated by bioethical issues and that "the balance must shift" (Clinical Ethics, 1994, p. 489). She further states, "Autonomy in long-term care includes making meaningful choice possible and enabling consumers of such care to retain consistent patterns and values developed over decades of living." Ethical practice in this setting must foster the development of care plans for dependent people that recognize their individuality and respect their right to make choices, to be treated with respect and to have their rightful privacy.

These values of autonomy, respect and privacy were three of the values that were often mentioned by residents participating in the Personal Values Research Study (Nichols, Sansone, & Schmitt, 1996) recently completed at Frances Schervier Home and Hospital. This study, funded by a NYSDOH Dementia grant, sought to determine the impact of dementia on a nursing home resident's values. Three times, at six month intervals, residents were interviewed and asked what was important for them, asked to rate the relative importance of a constellation of values that had been identified in the pilot study as those frequently mentioned, and finally to choose, via vignettes, between pairs of the six values mentioned most often: health, relationships, religion, independence, appearance and safety/security. Although the inroads of dementia did make people with this affliction somewhat less stable about the values they expressed there were two values that survived even advanced dementia processes: relationships and health.

Knowing that these two values do remain deeply ingrained and that they are widely held, long- term care facilities can emphasize their importance in diverse ways. They can do such things as ensure that residents with dementia will receive needed assistance with telephone calls to loved ones, arrange that visitors have places for private and uninterrupted visiting, encourage the use of videotapes for family members who do not live nearby, or help with letter writing. Health complaints will be treated as legitimate, doctors will take time to listen and explain, and nurses will not assume that they know what is best for the resident.

When probing for values the interviewer for this study often received poignant answers. One 96 year old lady, whose face was badly disfigured by skin cancer, said the most important thing in the world to her would be to have a bologna lunch--after several years in the home she had grown weary of the large lunches served and worried about the constant waste when she could not eat the meal. She did not complain because she did not want to draw attention to her appearance. Respecting this lady's wish to exercise autonomy over her meal choices was easy to accommodate; other preferences may prove more difficult but the reward will be enhanced resident satisfaction.

Interestingly, the study was based on the widely accepted notion that values are a stable aspect of one's personality and, that if this was also true in dementia, values would serve as a way of prolonging the personhood of the dementia victim. What emerged as an unexpected finding was that the control group of non-demented resident did not display great stability of values. The literature suggests that values shift only after an experience of tremendous import. Speculating that admission to the nursing home might be one such experience the values of those who had been in the home less than a year were compared to those who had been institutionalized longer and had a period of time to adjust; there was no significant difference between the groups. This finding demonstrates that a great deal more study will have to be done on this topic and also strongly suggest that long-term care residents must be interviewed on a regular basis to determine what their preferences are. The admission interview, usually done at a time of great stress, should not serve as the "final word" about their values.

Respecting the personal values of the long-term care resident is one way to help re-insert the concept of "home" into the nursing home. Recent trends in long-term care indicate that such efforts are warranted and quickly. The small not-for-profit nursing home often administered by religious or philanthropic organizations and perhaps conducive to maintaining residents' autonomy is fast disappearing. More than 60 percent of today's nursing homes are run for profit, they are often part of a chain and are increasingly large, demonstrated by the fact that nationally the number of nursing home beds increased last year while the number of long-term care facilities declined (Takamura, 1998; http://www.os.dhhs.gov/news/press/press.html). It remains to be seen how this will impact on the elderly nursing home resident's rights and autonomy.

Maintaining a sense of one's self is a basic human need that is threatened by institutionalization. There is a tendency to scapegoat the nursing attendants as the defective elements in the system but the responsibility is to be borne by all who work in the long-term care industry. Regulators need to offer encouragement for innovative programs that promote resident's well-being rather than concentrate on the fulfillment of routines that stifle individual creativity and thought. Administrators can emphasize the importance of the individual and offer training sessions that sensitize all of their staff to the need to respect residents' values. Even extremely dependent people retain the right to make choices and decisions and to have them honored whenever possible. Mary needs to go to daily Mass far more than the facility needs to have its toileting routine so regimented that it supersedes this value.

Ethics Network News, Winter 1998, Vol. 4, No. 1, pp. 3-5,

https://www.angelfire.com/on/NYCLTCethicsnetwork/lschmitt.html

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Posted 7/14/99.