care-related preferences and values of elderly community-based

Copyright 1997 byThe Cerontological Society of America

The CerontologistVol. 37, No. 6, 767-776

This article describes the development and implementation of a brief values assessmentprotocol to be used by case managers working in community-based long-term care (LTC) for

the elderly and presents data on the values and preferences of 790 LTC clients at twolocations. The importance that clients placed on selected issues related to their care (e.g.,

privacy, daily routines, activities, involvement of family in care, the trade-off betweenfreedom and safety) varied as did the specific content of those issues. Associations were

found between the content and strength of preferences. The work has implications forresearch and practice.

Key Words: Case management, Home and community-based services,Assessment, Values, Preferences

Care-Related Preferences and Valuesof Elderly Community-Based LTCConsumers: Can Case ManagersLearn What's Important to Clients?1

Howard Degenholtz, PhD,2 Rosalie A. Kane, DSW,3 and Helen Q. Kivnick, PhD4

Home and community-based services (HCBS) forelderly people needing long-term care (LTC) are al-most always mediated by case managers when stateor federal money is used to subsidize services. Casemanagers authorize in-home and other servicesbased on standardized comprehensive assessmentsand develop care plans that specify how, when, andby whom that care will be provided. Such assess-ments rely heavily on standardized batteries ofquestions about the physical, mental, and socialneeds and resources of the clients and sometimesthey incorporate well-established measurementtools (Rubenstein, Wieland, & Bernabei, 1995; Gallo,Reichel, & Andersen, 1995; Kane & Kane, 1981). Butformal assessments typically fail to touch on clientvalues and preferences. Case managers seldom askclients directly about their values and preferencesduring the course of their work, instead drawing in-ferences from cues around them (Kane, Penrod, &Kivnick, 1994; Kane, Penrod, & Kivnick, 1993).

Long-term care services are intimate and personalby their very nature. They entail assisting older peo-

1The research described here was supported by grants from The Retire-ment Research Foundation, Chicago, Illinois. We gratefully acknowledgethe support of our project officer, Brian Hofland.

'Research Fellow, Institute for Health Services Research, University ofMinnesota. Address correspondence to Howard Degenholtz, Center forMedical Ethics, University of Pittsburgh, 3708 5th Avenue, Suite 300, Pitts-burgh, PA 15213.

'Professor, Institute for Health Services Research, University ofMinnesota.

'Associate Professor, School of Social Work, University of Minnesota.

pie with personal care and daily routines, thus in-evitably shaping that older person's daily life (Agich,1993; Collopy, 1995; Collopy, 1988; Kane, 1995a).Case managers and other professionals advisingLTC clients have the opportunity and, some mightsay, the duty to help their clients formulate long-term plans that comport with the clients' individualvalues and preferences. Yet LTC clients too seldomare afforded the opportunity to make decisionsabout details of their care and to consciously designplans for that care in light of their own values andpreferences (Kane, 1995a; McCullough, Wilson,Teasdale, Kolpakchi, & Skelly, 1993), That failure isevidenced by the long-standing problem of "cookie-cutter" approaches, in which two or three standardservice plans are used for virtually all clients re-gardless of the individual details in the clients' as-sessments (Frankfather, Smith, & Caro, 1981; Kane,1995a). Gibson (1990) has argued that older peoplethemselves may be uncertain of their own valuesand preferences on matters that they have not pre-viously considered; thus, a conscious effort seemsneeded to bring values and preferences to the at-tention of professionals and clients themselves.

We developed and tested a brief protocol for ex-ploration of client values and preferences as part ofa project to examine the effects of systematic valuesassessment on clients, case managers, family mem-bers, and care plans. This article presents data aboutclient values and preferences as collected by thattool. We examined (1) how clients characterize thecontent of their values and preferences, (2) whatimportance clients ascribe to their various values

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and preferences, (3) how the content of a client'svalue relates to its importance, and (4) differencesin values between new and ongoing clients.

Developing a Values Assessment Tool

Terminology. — Following Ogletree (1995), we de-fine values as broad beliefs about features in the ev-eryday world to which people attach importance,and preferences as more specific choices that flowfrom values; however, our assessment protocol elic-its information about values and preferences in tan-dem without making distinctions between them.Values and preferences are also related to underly-ing personality traits and to attitudes, often definedas favorable or unfavorable judgments on objects,persons, institutions, or events (Ajzen, 1988). We arenot concerned here with making precise distinc-tions among values, preferences, attitudes, and per-sonality. Rather, the values assessment was meantto help case managers become aware of their el-derly clientele as individuals, with their own per-spectives on quality of life and with idiosyncratic re-actions to and opinions about their care.

Protocol Development. — Our developmentalwork took place in steps during a period of severalyears. We held an invited working conference in1990 to discuss the rationale for and the format ofa values assessment for LTC (Kane & King, 1991;Caplan, 1992). Next, we conducted long, semi-structured in-person interviews (averaging about TAhours) with a convenience sample of 12 consumersfrom a local case-managed LTC program. We thenpiloted two versions of a shorter structured valuesassessment with a convenience sample of 50 localcase managers. To assess the validity of the shortervalues assessment, we administered it to the sameclients who had earlier been interviewed in depth.That early work confirmed the feasibility of incorpo-rating questions about values and preferences intocase managers' assessments, and suggested topicsto include. From it, we also derived practical princi-ples for an operational values assessment protocol:(a) To focus attention, it should be a self-containedbattery rather than be scattered throughout the as-sessment; (b) it should depict values at a middlelevel of detail, avoiding large abstractions (e.g.,friendship or justice) and minute preferences (e.g.,a bed by the window); (c) it should be short enoughto be tolerated by busy case managers; and (d) itshould combine a rating of the strength or impor-tance of each value with open-ended accounts of itsactual content.

We then identified two operational case manage-ment programs in two different states to participatein a demonstration project in which case managerswould actually apply a systematic values assess-ment: a 10-county mixed urban and rural site in aMidwestern state (Site A) and an urban single-county site in a Western state (Site B). In both pro-grams, case managers allocated services for thehome- and community-based Medicaid waiver,

though their program parameters and agency scalediffered considerably. Viewing the project as an "ac-tion-research" project, we used, at each site, agency-wide workshops and discussion to engage casemanagers in designing the content of the values as-sessment protocol to be used at their sites, with thepreliminary work serving as a starting point to gen-erate items. After the protocols were designed, weconducted extensive training with the case man-agers, including role-playing of how to introducethe values assessment and how to probe withoutleading as well as practice in recording verbatimclient responses rather than summarizing them.

The actual protocols used for the demonstrationare found in Figure 1. The top portion of the figurecontains the 9-item protocol used at Site A; the bot-tom portion shows questions used only at Site B.The first 7 items and the Site B items entailed both arat ing o f impo r t ance and an e labo ra t i on o f con ten t ,

The next questions are about the kinds of choices that might be im-portant to you as you plan your care now and in the future. I wouldlike to know how important each topic is to you and more aboutwhat the topic means.

Thinking about your care, now and in the future, How importanthow important would it be to:a is this issue?

1. " . . . organize your daily routines in aparticular way? v s n

2. " . . . participate in particular activities, eitherin your home or outside your home? v s n

3. " . . . involve or not involve particular familyor friends with your care? v s n

4. " . . . complete some project, attend somefuture event, or do something you lookforward to? v s n

5. " . . . have personal privacy? v s n

6. " . . . take steps to avoid pain or discomfort? v s n

7. Would it be more important to have the Come & gofreedom to come and go and do as you Restrictionsplease or would it be more important tobe safe and accept some restrictions onyour life? v s n

8. If you could not make decisions about yourcare, whom would you want to make them?

9. What in your life (what activities or experiences)makes you feel most like yourself?

The following two questions were included at Site B only:

Inserted between questions 3 and 4:

If somebody not related to you was helpingwith your care, or with services in your home,what kind of a person or personality wouldyou be hoping for? v s

Inserted between questions 7 and 8:

What, if anything, do you prefer in a homeor place where you live? What makesit a home for you? v s

Figure 1. Values assessment protocol.The actual form contained space for notes.

768 The Gerontologist


and were anchored by a reference to "thinkingabout care you might need now and in the future."The concrete question on choice of proxy-decisionmakers is different in kind; and did not include arating. The final open-ended item, "What makesyou feel most like yourself," was suggested by ear-lier work on sense of identity (Erikson, Erickson, &Kivnick, 1986; Kivnick, 1993); the earlier pilot hadshown that clients were interested in responding tothat item. The questions specific to Site B con-cerned preferences regarding a person who pro-vides help or care, and preferences about whereone lives when receiving care; at Site B, case man-agers could authorize payment to client-employedhome care workers selected directly by clients andcould also pay for services in foster homes andother residential settings.

Methods

Data Collection and Sample

During a 6-month start-up period for the demon-stration, all case managers were asked to administerthe values protocols in the course of their regularwork with all new clients and with all ongoingclients receiving reassessments, excluding onlythose who were too cognitively impaired to be in-terviewed. For the first 6 months after implementa-tion, one copy remained in the client's- record to beused to inform the case manager's work, and an-other (with identifying information omitted to pro-tect client and case manager confidentiality) wassent to the researchers for analysis. That procedureallowed us to accomplish two aims: to examine thequality and content of information about values andpreferences derived from the protocols and to pro-vide ongoing feedback to the programs about thequality of the assessments and the results. Suchfeedback, in turn, was expected to help maintainenthusiasm for continued values assessments andto foster reflections about how well the program asa whole was able to respond to client values.

At Site A, 421 values assessments were returnedto the researchers during the 6-month start-up pe-riod: 244 (58%) with new clients, 143 (34%) with on-going clients, and 23 (5%) with clients with undocu-mented admission status. Eleven (11) protocols (3%)were returned blank, 6 because clients were tooconfused and 5 because of client refusal. At Site B,410 values assessments were returned: 123 (30%)with new clients, 96 (23%) with ongoing clients, and150 (37%) without designation. Forty-one (10%)were returned blank for a variety of reasons: clientconfusion (16), a language barrier and no translator(13), client illness (5), client refusal (5); and other (2).At Site B only, case managers recorded the settingwhere the interview with the client took place. Themost common setting for the assessment wasclients' homes (238, 65%), followed by adult fosterhomes (49, 13%), residential care facilities (20, 5%),nursing homes (15, 4%), case managers' offices (7,2%), home of a son or daughter (3,1%) and a hospi-

tal (2,1%). The setting where the values assessmentwas done was missing in 35 (10%) of cases. The 779clients with completed values assessments (410from Site A and 369 from Site B) during the start-upperiod constitute the sample.

Coding

The open-ended questions were coded qualita-tively, following an iterative process of developingcategories, coding, refining the categories, and re-peating the process with a new group of protocols.Rater bias was reduced by having a second rater re-view the coded responses; inconsistent ratingswere reconciled through discussion and consensus.For quantitative treatment, we combined categoriesfurther. Chi-square tests were conducted to detectassociations between variables, as appropriate.

Results

Description of Participating Case Managers

We compared the 19 case managers at site A andthe 41 at Site B who worked directly with clients andwere thus eligible to be in the study. The case man-agers were largely college-educated (95% at Site A,85% at Site B) women (95% at Site A and 70% at SiteB) with an average of 3.7 years of experience at SiteA and 7.8 years at Site B (p < .01). At Site A, caseloadsaveraged about 100 clients per case manager. At SiteB, specialization occurred that affected caseloads.For example, the 8 case managers who did only in-take had about 18 clients at any given time. The 11with ongoing caseloads of home care clients andfoster home residents under Medicaid waivers aver-aged about 114 cases; the 11 who worked in sub-contracted, sliding-fee programs did both intakeand ongoing case management for clients whose in-comes exceeded Medicaid and they had an averagecaseload of 54; and the 8 with ongoing caseloads oflong-stay nursing home residents averaged 141cases. Case managers who worked only with adultprotective services and high-risk clients (3 at Site Aand 4 at Site B) had no fixed caseloads.

The 7 case managers who worked exclusively withprotective services clients quickly decided not to ac-tively participate in the project because of the quasi-legal nature of their work; thus, we assume theycontributed only a few values assessments, if any.Also, the 7 intake case managers and the 8 nursing-home case managers at Site B were less engaged inthe project than others. The bulk of the assessments,therefore, come from 16 case managers at Site A andthe 22 case-managers at Site B with ongoing case-loads in the Medicaid waiver and subcontracted pro-grams. Because the values assessments were notidentified by case manager, we cannot analyze re-sults by case manager characteristics.

Importance Ratings

Figure 2 presents the proportions of all clients(new and ongoing) by site who viewed each topic as

Vol. 37, No. 6,1997 769


"very important." Certain topics received high im-portance ratings, particularly privacy, family involve-ment, freedom and safety, characteristics of a home,and characteristics of a helper (the latter two ques-tions were asked at Site B only). In general, theclients at Site B attributed higher importance to allthe areas compared with clients at Site A, with theexception of involving family members in care,which was viewed as very important by an equalpercentage at each site. At Site A, the issue that themost people found to be very important was involv-ing family or friends in their care (about 70%), fol-lowed by the trade-off between freedom and safety(68%). In the middle were activities (45%), futureevent (47%), privacy (55%), and avoid pain (51%). Atboth sites, organization of daily routines generatedthe fewest clients who rated the area as very impor-tant. The two areas that were unique to the Site Bprotocol were among the three most important top-ics at that site.

Table 1 compares the importance ratings of newand ongoing clients at each site. At Site A, ongoingclients rated all issues but one as more importantthan did new clients (involvement of family was theexception), whereas at Site B, more new clientsfound all issues to be very important than did ongo-ing clients. At Site A, three of these contrasts (dailyroutines, activities, and the freedom/safety trade-off) reached statistical significance, whereas at SiteB only one contrast, activities, reached statisticalsignificance.

Content of Values

We classified the content of clients' responses

broadly to capture the central tendencies in the re-sponses to each question. For some topics, such asdaily routines and family involvement, we createddichotomous, mutually exclusive categories (e.g.,routines were coded as either organized or flexi-ble). For other topics, however, such as privacy or thenature of a home, we used nonexclusive categoriesto capture the meaning of peoples' responses. Fig-ure 3 illustrates how we moved from actual re-sponses on the protocol to coded categories. Se-lected specific topics are discussed below. The firstand fifth columns of Table 2 show the distributionsfor the 6 out of 9 items coded with nonexclusivecategories.

Routines. — For the issue of daily routines, clients'responses fell into two exclusive categories whichwe labeled 'f lexible' and 'organized' (see Figure3). Responses that reflected a sense of flexibilityranged from pleasantly unstructured (e.g., " I 'm re-tired — I can do what I want when I want.") to indif-ferent (e.g., "I t doesn't matter how things get done,just that they get done."). At Site A, 41% and, at SiteB, 58% of responses fel l into that category. Re-sponses that described how clients' days are orga-nized, or elaborated on why it was important forthem to be organized were classified as organized(e.g., " I get up, get my breakfast, and take mymedicine." "I try to have a regular routine. That wayyou can get things accomplished"). Some clients at-tr ibuted their routines to a lifelong pattern, andsome to current medications or dietary restrictions.Some said that if their days are not well organizedthey tend to get confused. At Site A, 59% and, at SiteB, 42% of responses fell into that category.

Involve Family HelperDaily Routines Privacy Activities Freedom/Safety Home

VZ\ Site A (n = 421) m Site B (n = 369)

Figure 2. Percent of clients at Site A and Site B who rated each item as "very important."



Freedom and Safety. — The question about thetradeoff between freedom and safety called for adiscrete choice between "safety and protection" or"freedom to come and go" and a qualitative elabo-ration. We categorized the qualitative responses asreflecting a preference for freedom, safety, or acombination of the two. We then reconciled thequalitative coding with the discrete choices. Caseswith no discrete choice were given the categoryfrom the qualitative coding, and vice versa. If thetwo pieces of information were different, or thequalitative code reflected a desire for both freedomand safety, the case was placed in a third categorythat reflected ambivalence. At Site A, 49% of clientspreferred to have the freedom to come and go, 41%

Table 1. Percent of Clients Responding 'Very Important'by Timing of Assessment

Issue

Daily RoutinesActivitiesInvolvementFuture EventPrivacyAvoid PainFreedom/SafetyHelperHome

Site A

New(n = 244)

35397143545163——

Ongoing(n = 143)

45**53**61*53585176*——

SiteB

New(n = 123)

577876637170867785

Ongoing(n = 96)

5461*68626663837576

preferred to accept some restrictions and be safe,and 11% were ambivalent. At Site B, 62% of clientspreferred to come and go, 26% preferred to be safe,and 2% were ambivalent.

Goals and Projects. — A large proportion ofclients (41% at Site A and 40% at Site B) indicated

Issue Sample Statement Category

• Daily "I get up late and eat whenRoutines I want to. I like to take things

slow. I'm easy-going like mydad.""I try to have a regular routine.That way you can get thingsaccomplished."

• Privacy "I like my privacy. My home ismy castle. I don't like peoplepoking around. I had enoughof that in the Army and thegovernment.""I don't like undressing in frontof others.""It doesn't bother me to haveto divulge my finances.""I like to be out and about withpeople."

• Criteria for "Having flowers"Home "Having family around."

"It's not a home without love."

• Flexible

• Organized

• General Privacy

• Personal/Body

• Financial

• Social

• Physical• Social• Atmosphere

*p < .05; **p < .01, based on Pearson's Chi-Square. Figure 3. Coding of open-ended responses.

Table 2. Content of Preferences and Relation to Importance Levels by Site

Item

Daily RoutinesFlexibleOrganized

Involve FamilyDo not involveInvolve

ActivitiesNo specific activity mentionedSome specific activity mentioned

Future EventNothing to look forward toAn activity or event mentionedGetting better

Avoid PainAvoids painPuts up with painDescribes pain

Freedom/SafetyCome and goAccept restrictionsAmbivalent

%incat.

4159

2873

3763

4159—

622810

494111

NotImp

567

333

333

634

—

22532

128

Site A

SomewhatImp

(n = 385)3730

(n = 389)2420

(n = 389)2420

(n = 378)1728—

(n = 367)315224

(n = 382)174048

VeryImp

763

4377

4377

2168—

672443

825845

%incat.

* 5842

* 2575

* 2278

* 404614

78157

* 622612

NotImp

222

192

233

4526

11029

32

—

SiteB

SomewhatImp

(n = 315)4319

(n = 295)2820

(n = 326)3320

(n = 243)232314

(n = 288)303124

(n = 258)111830

VeryImp

3579

53 *78

44 *78

32 *7580

696048

868170

Note: New, ongoing, and clients whose status was not documented were combined for these analyses, making a potential samplesize of 421 at Site A and 369 at Site B. The actual sample available for each contrast varied because of missing data. Percentages may notadd to 100% due to rounding.

*p < .001, based on Pearson's Chi-Square for n X 3 contrast.

Vol. 37, No. 6,1997 771


that they had no events, projects, or goals to antici-pate. That is even more striking because we codedrather minimal answers (e.g., the arrival of spring,Thanksgiving dinner) as positive responses alongwith completion of substantial projects or expecta-tion of major events (e.g., an extensive trip or thebirth of a great-grandchild). At Site A, 9% of thosewho had nothing to anticipate commented that theywould like to be involved with something "if Icould." At Site B, 14% of the clients were lookingforward to a rehabilitation goal or improvement oftheir physical conditions, a response that never oc-curred at Site A.

Family Involvement. — We coded family involve-ment dichotomously; if the client indicated a prefer-ence to have no family involved or a preference toexclude a particular family member from care, wecoded the item as "do not involve family." Thoughmost wanted to involve their family members (73%at Site A, 75% at Site B), those who did not varied intheir reasoning: Some preferred not to be a burdento relatives, whereas others had specific relativeswhom they did not trust or like. Usually, but not al-ways, the clients who expressed a negative attitudeabout family involvement localized that sentimentto one particular relative.

Activities. — We coded the item on activities di-chotomously by whether the client mentioned oneor more specific activities in his or her life or gaveno examples. We did not code the actual activitiesbecause they ranged widely, including activitiespursued in and out of the home. Religiously ori-ented activities such as reading the Bible or listen-ing to religious programming figured highly.

Pain and Discomfort. — The large majority ofclients at both sites preferred to avoid pain and dis-comfort. Only 28% at Site A and 15% at Site B indi-cated that they would rather put up with pain thanavoid it by taking medicine or restricting their activi-ties. Ten percent (10%) of clients at Site A, and 7% atSite B interpreted the question literally, and eithersaid that they were not in any pain or describedwhatever pain they had.

Privacy. — Clients' responses to the questionabout privacy were coded with four non-exclusivecategories depending on what types of privacy werementioned, namely, general privacy, personal/bodyprivacy, financial privacy, and social aspects of pri-vacy (not shown on Table 2). At Site A, 8% did notelaborate at all, and 28% of responses fell into twoor more categories. At Site B, where responses ingeneral were more sparse, 13% did not elaborate atall, and only 6% fell into two or more categories.The distribution of responses about privacy differedbetween Site A and Site B. At Site B, the most com-mon privacy category was "social" (56%), a categorynot used at all at Site A. Examples of the social cate-gory are wanting to have contact with other people,wanting to have time alone, or wanting to have per-

sonal space. At Site A most responses were codedin the general privacy category (63%), characterizedby statements such as "I like my privacy." At Site B,the general privacy category was the second mostcommon (23%). The personal privacy category wasused for 39% of responses from Site A and 14%from Site B and mainly had to do with allowingother people to see your body or help with per-sonal care tasks such as bathing or dressing. Finally,the financial privacy category was used for 23% ofresponses from Site A and 11% from Site B. Re-sponses placed into this category had to do withhandling money, business affairs, or finances.

Criteria for a Home or Place to Live. — For 32% ofthe clients, no elaboration was recorded on thisissue. We coded the actual comments into threenonexclusive categories (not shown on Table 2):56% mentioned intangible aspects of the atmo-sphere (e.g., feelings of ownership, freedom, orlove), 49% mentioned physical surroundings, and24% mentioned the social relationships or interac-tions associated with the place (e.g., living with theirspouse, having visitors).

Criteria for a Helper. — We categorized the pref-erences for the characteristics of helpers into threenonexclusive categories (not shown on Table 2).With 9% not elaborating at all, almost all those whocommented (88% of the entire sample) expressedpreferences related to their helper's personalitytraits (e.g., an honest person, a caring person, afriendly person). About one third (32%) indicatedthe importance of competence or task proficiency,and 10% expressed preferences for the demo-graphic characteristics of their helpers (e.g., race,gender, age, religion). The latter raised a sensitiveissue for case managers, who then needed to con-sider whether it was appropriate to honor a discrim-inatory preference.

New Versus Ongoing ClientsAt Site A, statistically significant differences be-

tween new and ongoing clients were found in thecontent of the preferences on three issues: involv-ing family in their care, participating in future events,and avoiding pain (not tabled). Thirty-seven percentof ongoing clients, compared with 20% of newclients (p = .000) indicated a preference that one ormore family members not be involved in their care.Sixty-five percent (65%) of new clients mentionedsomething specific they were anticipating, com-pared with 48% of ongoing clients (p = .005). Finally,74% of ongoing clients indicated that they takesteps to avoid pain, compared with 57% of newclients (p = .006).

At Site B differences emerged between new andongoing clients with respect to daily routines and tothe issue of freedom and safety (not tabled). Fifty-one percent of new clients, compared with 31% ofongoing clients indicated that they preferred tohave their daily routine organized (p = .004). New



clients were also more likely to state that they pre-ferred to have the freedom to come and go (64%)compared with ongoing clients (57%; p = .014). Also,18% of ongoing clients were ambivalent on thisissue compared with only 5% of new clients.

Association Between Importance Level and ContentCombining new and ongoing clients from each

site, we cross-tabulated the importance ratingsgiven to each item with the qualitative coding of thelong responses and performed chi-square tests. Asshown in columns 3-5 and 7-9 of Table 2, chi-squaretests revealed a consistent pattern of associationsbetween the importance level and the category ofthe content of the response. Usually the findingsfollowed logical patterns. To illustrate, at Site A, 63%of clients who indicated that they prefer their dailyroutines to be organized said that this issue wasvery important, whereas only 7% of those who indi-cated that they preferred their day to be flexiblestated that this issue was very important, a patternalso observed, though less strikingly, at Site B. Simi-larly, those who wanted family and friends involvedwere more likely to view the matter as very impor-tant than those who wanted noninvolvement, butsome of the latter also viewed this issue as very im-portant. At Site A we also found an association be-tween preferring the freedom to come and go andrating the topic as very important; this did not reachstatistical significance at Site B.

Qualitative ImpressionsIn the process of examining 790 client values pro-

tocols generated in everyday practice, we noted dis-parities in the detail with which values and prefer-ences were recorded. In general, Site A protocolsoffered more detail than Site B protocols. Variationswere seen within the sites as well. Although casemanagers were anonymous for this exercise, hand-writing differences showed that some case man-agers were characteristically more or less detailedin their recording.

Other impressions were generated in the tool de-velopment, training, and feedback processes. Eventhough the case managers involved in this projectwere largely seasoned human service professionalswith substantial assessment experience, trainingproved difficult.

To complete values protocols case managers wererequired to perform in a way discordant with manyof their own established patterns. Several case man-agers said they thought it was more natural to insertquestions about values and preferences when theyseemed to be indicated rather than adhering to afixed series of items. It also became apparent thatcase managers used considerable license in the waythey administered the state-mandated comprehen-sive assessment, so that for many the values assess-ment was the most strictly structured component.Other concerns included general time pressures;possible redundancy if preferences had been re-vealed earlier in the interview; concerns about open-

ing up client preferences that case managers feltimportant to address; and, in some instances, reluc-tance to lead clients into a discussion of dishearten-ing material. For example, one case manager saidthat asking clients about plans, projects, and antici-pated events was cruel because many clients wouldbe forced to reveal their low expectations.

Discussion

This project identified topics at a mid-level of de-tail around which to assess the values and prefer-ences of LTC clients sufficiently cognitively intact tobe interviewed. It demonstrated that case managersvary in their willingness to incorporate values as-sessments in their work. However, when case man-agers could be convinced to ask the questions,most clients proved willing to answer them. More-over, clients seemed to answer the questions withconsiderable thought and differentiation among theitems. Respondents seldom checked everything as"very important" or, conversely, as "not important."Content analysis of the responses revealed interest-ing distinctions in the substance of preferences,pointing out the danger of jumping to conclusionsabout what clients mean by abstractions like "pri-vacy" or "safety."

Dominant patterns were found for most items,linking the likelihood of rating a topic as importantto the content of the client's preference. However,the minority opinion was also present for mostitems. Some of these minority views might have realimportance for case management: for example, con-sider the implications of the clients who attachedgreat importance to having some or all family mem-bers involved in their care. Some importance andcontent differences were found across sites and be-tween ongoing versus new clients.

LimitationsThe methods by which we secured and analyzed

the data were designed to provide an easy and un-threatening approach to obtain information in anongoing way and enable us to provide regular feed-back to the programs. Therefore, we did not collectdetailed client data (which would have involvedcase managers in more steps), nor did we identifycase managers. This limited the analyses that wecould perform and the conclusions we could drawabout how client characteristics or case managercharacteristics affected the client values recorded.

This was not an observational study. We cannotknow how well and carefully the protocol was ad-ministered, how well the leads were followed withsubsequent probing, and the extent to which casemanagers refrained from jumping to conclusions.When we have a sparse values protocol, moreover,we cannot know how much the paucity of materialis related to what the client chose to say versuswhat the case manager chose to record. Had ourmain purpose been to test a measurement tool,these circumstances would have been too uncon-

Vol. 37, No. 6,1997 773


trolled. On the other hand, our approach does indi-cate what might happen when values and prefer-ences are assessed in ordinary practice. All thecomplexity and variation resulting from clients'health, disability, family, and living environmentmay affect the quality of the values assessment, aswell as the willingness of the client to discuss theseabstract, personal issues and the case managers'ability to elicit the information. Also, case managerstypically conduct comprehensive assessments whenthe health, physical function, mental function, orfamily support of the elderly person is at somestage of a crisis. Although we believe case managersmust begin assessing values before they start an ini-tial plan, this timing may not be the most conduciveto thoughtful inquiry on the part of the case man-ager or reflection on the part of the client.

Given the lack of client-level data and the lowercompletion rates at Site B, we cannot easily interpretsite-specific differences. And the cross-sectionalnature of the data makes interpreting differencesbetween ongoing and new clients difficult; we donot have repeated assessments from the sameclient at two points in the process. Possibly realclient differences existed by site, or there may havebeen idiosyncratic site-specific differences in theway cases were assigned that led to a different qual-ity of assessment and recording at either the initialor follow-up assessments by site. At Site B, therewas specialization of cases with intake workers andongoing workers seeing clients at different stages.This implies that the distinction between new andongoing may have a different meaning at Site Aand Site B. Also at Site B, many more clients wereliving in specialized care settings such as adult fos-ter care homes, a fact which may reflect a clientpopulation that is somewhat more disabled than atSite A. There may have been a ceiling effect at SiteB, since virtually all clients rated the "home" issueas very important.

Research Implications

The accuracy and depth of insights into client val-ues and preferences gained through the use of avalues protocol depend on the interaction of bothclient and case managers. It is apparent that casemanagers need to have the comfort, interest, andtime to pursue a values protocol seriously. We haveno data on client disability levels or other clientcharacteristics for this study, but can speculate thatclient factors might make a difference in the extentto which case managers engaged in the values as-sessment. That would be a topic for another study.Observational and ethnographic approaches, inparticular, might yield useful insights into the phe-nomenon of professionals interacting with LTCclients about their values.

The differences that emerged between new andongoing clients, particularly at Site A, suggest thatclients' responses may differ depending on howlong a client has been receiving in-home services.Longitudinal applications of values assessments are,

of course, needed to examine the extent to whichthe kinds of values and preferences reported arestable. The greater proportion of ongoing com-pared with new clients finding freedom/safety, dailyroutines, and activities to be very important may re-flect a recognition that LTC services can supportand enable them to have the life and lifestyle theywant. The lower level of importance placed on in-volvement of family and friends may be the result ofhaving adjusted to having formal care providers. Fu-ture studies that explore clients' values before andafter experience with the health care system, bothacute and long-term care, will shed light on thatissue.

The question of whether people's values and pref-erences are indeed stable is of some importance toBioethics. The movement to have people documentin advance their preferences for acute care at theend of life is based on the notion that they not onlyknow what they would want, but that their prefer-ences are stable. Peoples' lifelong values and prefer-ences are given moral priority because they repre-sent peoples' autonomous desires. Research intothis area is mixed, however, with some studiesshowing stability over time (Schneiderman, Pearl-man, Kaplan, Anderson, & Rosenberg, 1992; Everhart& Pearlman, 1990; Emanuel, Emanuel, Stoeckle,Hummel, & Barry, 1994) and others finding instability(Pearlman, Cain, Starks, Patrick, Core, & Uhlman,1995).

In the context of case-managed LTC, an importantnormative question is raised. That is, should the sys-tem place greater weight on preferences peopleform before they have had experience with receiv-ing services or, alternatively, should the system at-tend to people's subsequent, or more mature pref-erences, developed once they have learned thepotential as well as the limitations of the service sys-tem? Perhaps providers should strive for continu-ous monitoring and adjustment. More empirical re-search into preferences for LTC, and theoreticaladvances in the formation of preferences, areneeded to help inform this issue.

Work of the type reported here could help in-form scale development to measure selected ab-stractions such as "privacy preferences" or "valuedcharacteristics in a helper." Though our focus wasnot to develop psychometrically acceptable tools tomeasure particular values, asking large numbers ofLTC clients about their values and subjecting the re-sults to content analysis suggested that many ofthese concepts are multidimensional and gave in-sights into where one might start in an item pool todevelop formal measurements.

Finally, the difficulties we encountered in imple-menting the project suggest that organizational the-ory might shed valuable light on facilitators and ob-stacles to implementing accurate values assessmentsin case management practice. Site A had a muchlower staff to supervisory ratio than Site B. That ledto a greater degree of independence at Site B, withless emphasis on group problem solving and less re-liance on supervisors or the director for guidance



with difficult cases. At Site A, case managers weremore accustomed to using assessment tools withstandardized wording of questions, and were there-fore less affronted when asked to use the values as-sessment protocol as written. By contrast, at Site B,case managers felt that their clinical skills were con-strained by having to use standardized questions,and the values assessment was the only standardizedinstrument that they regularly used. That greater de-gree of autonomy and independence at Site B wasassociated with poor enthusiasm and low levels ofparticipation. The strong and cooperative supervi-sory structure at Site A reinforced the importance ofthe project and helped maintain enthusiasm.

Practice ImplicationsThis brief values protocol yielded information

that should enable case managers to improve theirpractice with individual clients and should enableprograms to improve the way they meet the needsof all clients. We were struck that the informationgenerated provided a way of identifying clients whohad no meaningful activities or projects filling theirdays and, more important, provided clues to thetypes of activities that might please the clients orcapture their interest. Some questions (such asthose on daily routines, privacy, pain, help, and liv-ing environments) could lead to a dialogue thatwould shape or reshape the care that the client wasreceiving.

The question about trade-offs between freedomand safety revealed considerable ambiguity inclients' responses, reflecting, we believe, that thetopic itself inherently generates ambivalence. Clientswant to be free to come and go, but they also wantto be safe. For example, often clients described de-liberate decisions they had made to balance thosetwo values (e.g., "That's why I moved here [seniorhigh-rise] — so I could wander around freely, butstill be safe in the apartment building."). That am-bivalence is also reflected in the views of case man-agers. Clemens and colleagues (1994) studied onecase management program intensively, finding thatcase managers adhered to a "politically correct"view about client freedom, yet also acted to maxi-mize safety. Similarly, in a poll of professionalsdone as a precursor to the "1995 White House Con-ference on Aging" (Kane, 1995b), the most commonresponse to a question about the conditions underwhich a client should be able to act against the ad-vice of professionals regarding their own safety was"when it will not harm them or others." Our diffi-culty in classifying clients dichotomously on this di-mension may reflect their struggle to achieve acompromise between those two poles.

More probing and discussion on subsequenthome visits or telephone conversations by casemanagers are probably needed to further pinpointand clarify a client's preferences in the area of free-dom and safety. What risks is the client willing totake? What activities does the client want to avoid?

How safe is safe? Determining what services or pro-grams are available may require considerable cre-ativity on the part of the case manager, and the in-creased attention to values and preferences canenhance the case manager's ability to support arisky decision. It is unclear whether case managersare positioned well by their training or the structureof their work to pursue those topics fully.

Certainly, practice implications are prominent inthe challenges we found when implementing thevalues protocol. It was challenging to train casemanagers, who are generally pragmatic, practical,and problem oriented, to explore clients' more ab-stract values and preferences. Our experiences sug-gest that any case management program wishing toincorporate a values assessment protocol needs tobuild in a long time line for training as well as poli-cies and procedures for using the information. Pro-viding feedback on client values and preferences inthe aggregate does encourage case managers tocontinue collecting the data. Such tabulations alsohighlight any systemic divergence between typicalpreferences and typical care plans, which may inturn suggest changes in administrative or publicpolicies.

Perhaps the most important practice-orientedwork that lies ahead is demonstrating to case man-agers that it is indeed possible to shape care plansthat are more consistent with clients' values and towork in other ways that help clients realize theirown preferences. In some instances, program rulesmay need to be changed (e.g., to permit a widerrange of purchasing, to permit case managers towork directly with the in-home workers employedby provider agencies, or to reduce caseloads). Butwithout changing policy, it is possible in a myriad ofsmall ways for case managers to respond more fullyto client preferences and to develop more detailed,sensitive care plans. Over time, a repository of prac-tice ideas and models of preference-sensitive careplans could be developed in terms of their referralpractices, the way they themselves behave withclients and families, and the suggestions they make.Also, the difficult cases in which client preferencesare at loggerheads with program possibilities formthe grist for wider discussion at case conferencesand by ethics committees.

Some case managers and their supervisors ex-pressed worry that values assessments might leadto "unrealistic expectations" on the part of clients.That is a legitimate concern, and one that in itself isrelated to broader social values about how to pro-vide publicly subsidized services. A rejoinder to thatconcern would be that it is desirable for consumersto develop enhanced expectations and to challengeproviders to meet them. Yesterday's unrealistic ex-pectations can be tomorrow's standard practice.Certainly, the hope that consumers would developexpectations based on their values and preferenceswas one rationale for the demonstration project.Another was that providers would become more at-tentive to issues raised by the values assessment.

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Received September 4, 1996Accepted May 5,1997

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The University of Pennsylvania invites applications and nomi-nations for the Boettner Chair in Financial Gerontology, anendowed chair. Candidates should have demonstrated signifi-cant scholarly achievements in analysis of the economic andfinancial circumstances and conditions of older persons. Theyshould be prepared to direct the Boettner Center's endowedprogram of research in these areas and to promote the dissemi-nation of knowledge that is useful for advancing the economicsecurity of older persons. The professorship will reside in theSchool of Arts and Sciences, the School of Social Work, theWharton School, or another school in the University as appro-priate. The deadline for applications is January 15, 1998.Applications should be addressed to:

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