Assisted living is an effort to bridge the gap between independent community- bas ed living and living in the more restrictive environment of a nursing home. There are certainly differences between the wellness levels and care needs of residents in these two types of environments. But communal living and varying levels of compensatory and therapeutic oversight by a staff of service providers are cultural elements that both have in common. And neither communal living nor oversight represents an easy adjustment for many individuals relocating to either an assisted living or a nursing home setting. Therefore, this article describes a framework that may be used when assessing the moral basis of ordinary everyday issues that affect residents in either type of situation, illustrates its use with a plausible fictitious story about a common everyday concern, and comments more specifically on its practical relevance for resident-focused issues in assisted living.
THE TAXONOMY OF EVERYDAY ETHICAL ISSUES
The "Taxonomy of Everyday Ethical Issues" was an outcome of an ethnographic analysis of everyday ethics in the care of nursing home residents with dementia (Powers, 2001, 2003), a condition that affects 60% to 80% of nursing home residents (Rabins, Lyketsos, Si Steele, 1999) and 40% to 60% of the assisted living population (Alzheimer's Association, 2003). However, this framework can be used equally well to conceptualize issues affecting cognitively intact as well as cognitively impaired residents in nursing homes and assisted living settings because it is grounded in a growing body of evidence about the common cultural characteristics of these environments.
The taxonomy includes four domains that are oriented toward individual and social values (Figure), These intersecting planes summarize ethical concerns that commonly arise m institutional and, by extension, assisted living cultures. Positive and negative valences associated with each domain represent distinctions between positive moral rights (i.e., the rights to have something done for or given to an individual) and negative moral rights (i.e., the rights not to have something done to or taken from an individual). Thus, the domain of "learning the limits of intervention" involves people's individual negative rights not to be forced to do things, such as using threats, fear, and intimidation to obtain compliance; manipulating, tricking or deceiving people into following ones wishes; depriving individuals of something in exchange for their cooperation.
The domain of "tempering the culture of surveillance and restraint" involves social value-driven practices that affect people's negative rights not to be restrained, confined, or intruded upon. "Preserving the integrity of the individual" involves people's individual positive moral rights (e.g., respect for human dignity; appreciation of personal uniqueness and individuality; freedom to do as one wishes, including making basic choices, managing one's own time, and refusing invitations, if so inclined). And, "defining community norms and values" involves people's socially driven positive moral rights (e.g., the right to attend community events; to have opportunities to form relationships; and to obtain a fair share of available goods, services, and amenities). The following application refers at times to the ethnographic report in this special issue about the Wheat Valley Assisted Living Culture (Al Omari, Kramer, Hronek, & Rempusheski, 2005, pp. 9-16).
Learning the Limits of Intervention
Cultural perspectives. At Wheat Valley, formal rules (e.g., agreement documents, scheduled mealtimes, designated bath and laundry days, predetermined shopping opportunities, assigned dining room seating) represent an organizational response to the service needs of residents. In addition to help with meals, housekeeping, and transportation that draw individuals into congregate living, a recent U.S. Department of Health and Human Services national survey of high privacy or high service assisted living facilities for frail elderly individuals suggests they may have significant personal care needs as well (Hawes & Phillips, 2000). This study reported that:
* A majority of individuals surveyed needed help with medications.
* At least half required assistance with bathing.
* One in five received assistance with some other activity of daily living.
* More than one quarter had moderate or severe cognitive impairment.
* Almost one third experienced urinary incontinence.
When individuals with these types of dependency needs become part of a larger system, intra- cultural assimilation of their taken-for-granted individual habits becomes an ongoing negotiation. And that negotiation is a practice in everyday ethics,
Ethical perspectives. Dependency can limit autonomy. At Wheat Valley, functionality (i.e., physical or cognitive capacity) emerged as the single over-arching theme that determined residents' abilities to participate and engage in the culture. Thus, the response to residents' needs for increased functional support was increased oversight of their daily activities by staff members, who also determined the timing of those activities in accordance with their own work schedules. Both by request or default, some residents were able to modify staff-driven routines and formal rules to individualize them to their needs (i.e., resident- defined informal rules). However, these findings do not reveal alternative ways in which residents may respond to such impositions, including passive tolerance, opposition, or refusal.
Passivity may be mistaken for acceptance or agreement with others' ideas of what is best for an individual. But, residents' refusals of care or attempts to limit direction of it, produces a tension between their rights to do so (i.e., personal autonomy) and others' desires to provide safe professional care (i.e., beneficence). Forcing care or encouraging passivity by doing tasks for, instead of with, residents raises ethical issues and further violates a major tenet of assisted living concerned with helping individuals to maintain physical independence and control over their environments.
Tempering the Culture of Surveillance and Restraint
Cultural perspectives. Privacy is highly prized in congregate living situations that are by nature very public places. Wheat Valley residents partially overcome the experience of being under varying levels of surveillance by adapting to a cultural norm of staff as family and appealing to an ethic of shared values that grounds relationships between residents and staff in mutual appreciation of one another as individuals. In such an atmosphere, some restraints, such as signing in and out of the building, may be relaxed.
Ethical perspectives. A culture of surveillance and restraint would appear to be the antithesis of the philosophy of assisted living that considers residents' privacy, freedom of movement, and freedom to associate and form relationships with individuals of their choice to be prime values and characteristics of these environments. However, these values are challenged by individuals' diminishing capacities that cause others to fear for their safety.
In Wheat Valley, as a resident's functionality declined, autonomy was balanced against personal safety as well as the safety of all residents. This increases the need for surveillance to assure that individuals do not come to harm in terms of placing themselves in unsafe situations or potentially harmful relationships that could involve exploitation (intentional or not) or abuse. An ethic of tempering surveillance and restraint in assisted living settings may introduce ambiguity because, although the philosophy of privacy and environmental autonomy for residents does not relieve staff of the responsibility to keep them safe, it may not always be clear when "keeping an eye out" for the welfare of frail adults with diminishing capacities exceeds individuals' rights to privacy, imposes others' values, and constitutes an affront to dignity.
Preserving the Integrity of the Individual
Cultural perspectives. At Wheat Valley, residents' private rituals included a multitude of habits and self-determined routines that were personally fulfilling and meaningful to individuals. Often these routines defined the individual (e.g., breakfast people and non-breakfast people). However, residents classified as "needy people" because of impaired mobility or cognitive deficits, were defined by a separate set of rituals tied to specific personal requirements (e.g., comfort rituals). Preserving the integrity of the individual through rituals tailored to residents' needs and wishes was exemplified by a sense of the importance of knowing the personal situation of every resident.
Ethical perspectives. Concerns about the integrity of the individual involve respect for human dignity, appreciation of personal uniqueness and individuality, consideration of special needs, and recognition of personal autonomy. Moral conflicts may arise from uncertainties about a resident's ability to be independent and self-directing versus vulnerabilities that may indicate a need for physical assistance, support or mediation of relationships with others, and protection from actual or potential hazards. But, basing moral action on sensitivity to what is meaningful to individuals - what rituals sustain them, what causes aggravation, what brings joy, what makes for a good or not so good day - is what helps them to rise above the challenges inherent in communal living situations.
Defining Community Norms and Values
Cultural perspectives. Public rituals at Wheat Valley included greetings and acknowledgments, social activities, and visiting. All were aimed at creating a sense of connection and community. For newcomers especially, defining a community's norms and values provides orientation to the social climate that public rituals exemplify.
Ethical perspectives. Honoring individual preferences for social engagement is strongly upheld m assisted living communities, where residents' unique personalities and independent lifestyles are observed to vary considerably. Facilities are expected to offer and provide access to a range of activities that could appeal to residents' interests. However, it is easy in such environments to underestimate needs for assistance and support that enable individuals to take full advantage of what the community has to offer. One of the more disappointing findings of the U.S. Department of Health and Human Services national survey was that almost three fifths (59%) of residents sampled said that assisted living facility staff never or only sometimes asked them about their activity preferences (Hawes Si Phillips, 2000). Thus, ignoring their needs for information, invitations, reminders, and engagement with others on how to structure their days around things of interest to them may have interfered with their rights to attend community events, have opportunities to form relationships, and obtain a fair share of available goods, services, and amenities.
The four domains of the taxonomy are oriented toward individual and social values. In communal living environments, the issues of everyday life revolve around these intersecting planes. "Learning the limits of intervention" and "preserving the integrity of the individual" involve individual values, calling attention to concerns about respect for residents' personal rights and individuality. "Tempering the culture of surveillance and restraint" and "defining community norms and values" involve social values, calling attention to concerns about duties to provide service appropriate to residents' individual and collective needs in a community context.
Ethical case analysis involves dealing with resident- focused issues in ways that do not lose sight of the complex interplay between individual and social values across all domains. Thus, the domains are not mutually exclusive. In practice, one could examine an ethical issue with reference to one domain and end up discussing facets of the case that relate to other domains comprising the integrated whole. However, the following illustration involves a narrower focus on an issue, exploring it in terms of competing moral goods (where it is difficult to fully meet the demands of both goods at the same time), asking relevant questions, and weighing pros and cons of possible courses of actions essential to any ethical case analysis.
The following fictitious case involves an ethical issue relevant to the domain "defining community norms and values" and is called "Ain't Misbevav'n" (see Sidebar on page 35).
This is an example of an ordinary everyday ethical issue common to assisted living and nursing home situations. There are many questions one could ask about this case, many possible actions and imagined outcomes, room for disagreement about what the issues are, and what more (if anything) should be done. There are no right or wrong answers.
If we use Mr. Scott's daughter's point of view as a starting point, the ethical principles of doing good (beneficence) and fairness (justice) are at issue. She believes that staff are not doing their best to ensure that her father receives all the benefits she expected he would have and to which he is entitled in this communal environment. Staff, however, raise the issue of autonomy in support of Mr. Scott's right to decide for himself,
Competing Moral Goods
Competing moral goods might be:
* "It is good to encourage relationship formation and socialization" versus "It is good to respect individuals' rights to do as they wish."
* "It is good to support family members' wishes regarding services for residents" versus "It is good to support residents' rights to refuse care and services,"
Questions that could have some bearing on this case are:
* Who has an understanding of Mr. Scott as a unique individual?
* What is the meaning of his actions?
* Who among other residents and staff have the most positive and consistent relationships with him?
* What is Mr. Scott's daily routine?
* What, from his perspective, makes for a good or a not so good day?
* What are his preferences?
* How do his personal daily patterns parallel the nature, timing, and scheduling of organized activities?
* How is information about social events communicated?
* What is Mr, Scott's understanding of these available opportunities ?
* Can he organize himself and remember things?
* Does he need to be reminded?
* How and when is he invited to events ?
* Do staff accept a simple "yes" or "no" response as indication of a resident's desire to participate?
* Might he perceive group activities to be too tiring or overwhelming?
* What are possible alternative paths to positive relationship formation and personally tailored pastimes?
Pros and Cons of Possible Actions
Discussion of the pros and cons of possible actions might be as follows:
Possible action No. 1. A repeat psychiatric follow up for depression should be requested with re-evaluation of mood-altering medications.
Pro: Psychiatric consultation is helpful whenever dementia is accompanied by possible depression. Depression can make dementia worse, and, once diagnosed, effective treatments are available.
Con: Mr. Scott's suspiciousness and unsuccessful past experience with drug therapy are possible drawbacks. Individual tolerance of medications varies and antidepressants also can worsen confusion in individuals with progressive dementia.
Possible action No. 2. A medical evaluation of Mr. Scott should be requested.
Pro: It is important to know if fatigue, undiagnosed pain, progression of currently diagnosed conditions, or some new condition may account for his reticence and distress.
Con: This action should be taken, but not as a substitute for discussion and evaluation of other approaches,
Possible action No. 3. Staff should continue to reassure Mr. Scott's daughter that they are making every effort to involve him in the social life of the community.
Pro: Mr. Scott may need more time to become engaged or just the "right" opportunity to capture his attention and interest.
Con: Waiting for Mr. Scott's behavior to change may encourage complacency on the part of staff and failure to examine their own behavior associated with this issue.
Possible action No. 4. Mr, Scott should be encouraged to say more about how he feels when he makes statements about not wanting to be "a bother" or "cause trouble,"
Pro: It is important to acknowledge the power-dependence ratio in this setting, where staff have more power than they might realize over residents who are dependent on them in so many ways. One does not know what effect this might be having on Mr. Scott, along with any other perceptions he may have about his present situation.
Con: It will require patience and sensitivity to win Mr. Scott's trust. Well-intended efforts to present staff members' perceptions of his situation by trying to "sell" him on the advantages of Pathfinder Village and insist that he has more power over his life than he may realize could be seen as argumentative,
Possible action No. Í, Mr, Scott may benefit from a relationship with a volunteer friendly visitor and one-on-one recreational or meaningful paid or unpaid work activities.
Pro: These individualized approaches may increase Mr. Scott's satisfaction and help him, in the long run, to regain interest and confidence in socializing more with others.
Con: There may be a shortage of volunteers or the facility may be too understaffed to provide one-onone approaches. Work opportunities also may not be an option.
This case is open to many other ideas and interpretations. It has been used to demonstrate how one could have a beginning dialogue about a common everyday ethical issue. It assumes that assisted living administrators and staff members have the best intentions of creating comfortable homelike environments that encourage independent decisionmaking on the part of residents. But also the wide variety of resident responses to those efforts would seem to support the practicality and helpfulness of an ethical approach that asks what moral issues are at stake in every human situation.
PRACTICE IMPLICATIONS OF AN EVERYDAY ETHICAL APPROACH TO ISSUES IN ASSISTED LIVING
The article in this issue, "Beyond the Rhythm and Routine: Adjusting to Life in Assisted Living" (Kennedy, Sylvia, Bani-Issa, Khater, Si ForbesThompson, pp. 17-23) explores the experience of everyday decision-making for selected individuals whose stories serve to illustrate and emphasize the heterogeneity of assisted living populations. Through case study analysis, these authors identified contextually relevant influences that affect older adults' decision- making and offered specific strategies that are a consistent fit with two broad principles that apply to the application of the everyday ethics taxonomy.
The first principle is that it is absolutely essential to have an understanding of who each resident is - as a unique individual with an established decision-making style that has shaped and guided responses to his or her life circumstances in the past and as a member of a particular social network that is a factor in his or her present-day decision-making. The second principle is that the legitimacy of residents' voiced preferences and requests, based on current efforts to decide how they would like to continue to lead their lives within what for most will be the newness of congregate living, should never be questioned. That is not the same as saying that every request and preference must be honored. But respect for who residents are as individuals and acknowledgement of their human rights is foundational to a measured ethical approach in which one considers the needs and interests of all parties concerned, including residents, their family members and friends, and assisted living facility staff. In the Sìdebar on page 36, practice implications are organized according to the domains of the taxonomy.
The considerations listed in the Sidebar are purposefully constructed to represent the challenges of competing moral goods whose coexistence in everyday life introduces contradictions and gives rise to issues and complications. There are reasonable questions that could be asked in the presence of the kinds of dilemmas that some of these juxtaposed statements suggest. How can I do good in this situation and avoid being paternalistic? Who can encourage this resident to exercise his or her rights or understand his or her responsibilities? When is the time to initiate a negotiated risk contract? What is the meaning of this resident's behavior?
Individual cases will dictate the nature of the ethical ìssue(s) to which a format similar to that followed in the fictitious story in the article might be applied. This approach calls for identifying competing goods, asking questions, and sorting out the pros and cons of a situation. Thus, ethical thinking can become a way of life that nourishes and encourages tact and attentive thoughtfulness in all human relationships.
- Alzheimer's Association. (2003). New report offers starting point for improved assisted living care. Retrieved June 8, 2004, from http://www.aiz.org/Media/newsreieases/20 03/042903assistedcare. asp
- Hawes, C., & Phillips, C.D. (2000). High service or high privacy assisted living facilities, their residents and staff: Results from a national survey. Retrieved June 8, 2004, from http://www.aspe.hhs.gov/daltcp/ reports/hshp.htm
- Kennedy, D., Sylvia, E., Bani-Issa, W., Khater, W., & Forbes-Thompson, S. (2005). Beyond the rhythm and routine: Adjusting to life in assisted living. Journal of Gerontological Nursing, Ji(I), 17-23.
- Powers, B.A. (2001). Ethnographic analysis of everyday ethics in the care of nursing home residents with dementia: A Taxonomy. Nursing Research, 50, 332-339.
- Powers, B.A. (2003). Nursing home ethics: Everyday issues affecting residents with dementia. New York: Springer.
- Rabins, P.V., Lyketsos, G.G., & Steele, C.D. (1999). Practical dementia care. New York: Oxford University Press.