Full text of DOI:10.1093/geront/41.5.612

The Gerontologist
Vol. 41, No. 5, 612–622
Copyright 2001 by The Gerontological Society of America
Analysis of Key Decision-Making Incidents in
the Life of a Nursing Home Resident
1
2
3
Celeste Shawler, RN, Graham D. Rowles, PhD, and Dallas M. High, PhD
Purpose: This study examined change in the decision-
making autonomy of a single nursing facility resident.
Design and Methods: This case analysis was part of a
larger 3-year ethnographic investigation of decision-
making events in four nursing facilities. In this case analy-
sis, the resident, her daughter, and three staff members
closely associated with the resident’s care were each in-
terviewed five times over a 15-month period. Results:
Analysis of interview transcripts revealed four themes in
decision making. Temporal change was evident in a
complex scenario regarding room changes. Spatial con-
text reflected the need for predictability and adaptability
in decisions using space. Interdependence of decisions
and decision makers was most evident with medical treat-
ment and health care decisions. Awareness, being in-
formed, and knowing what was going on was the final
theme. Implications: Despite having the best interests
of the resident in mind, the process of decision making in
nursing facilities may contribute to a pattern of gradual
withdrawal of decisional autonomy from residents re-
gardless of their ability to make decisions.
larity, a sense of “being in place” (Rowles, 1991,
2000).
The nature of a resident’s being in place is to a sig-
nificant extent a function of the decision-making en-
vironment in each setting and the degree to which
the resident him- or herself is involved as an active
participant in decisions that shape his or her daily
life and milieu. Involvement, or lack of involvement,
in everyday decisions such as those involving the
placement of furniture, timing of meals, choice of
seating in the dining room, and routine health care
often greatly affects a resident’s well-being and ac-
commodation to the institutional setting (High &
Rowles, 1995; Rowles & High, 1996, in press).
There is a growing literature in the domain of deci-
sion making in nursing facilities and the degree to
which residents are involved (Bradley, Peiris, & Wetle,
1998; Capitman & Sciegaj, 1995; Kayser-Jones,
1
995; Ryden, 1985). For example, Bradley and as-
sociates (1998) studied the frequency with which
nursing home residents and their surrogates dis-
cussed with clinicians the resident’s wishes concern-
ing future treatment. They concluded that no discus-
sions were documented for most residents. Even for
those with documented discussions, conversations
occurred rarely and were narrow in scope, suggesting
that residents’ roles in medical decision making were
limited. Ryden’s nursing home study revealed that
caregivers saw themselves as the predominant deci-
sion makers. Only in one-to-one and solitary activ-
ities did they prefer giving residents the primary de-
cision-making role, possibly because they viewed
most residents as incapable of making decisions. In
contrast, Lantz, Buchalter, and McBee (1997) found
that using a wellness group to emphasize residents’
strengths and their individual coping and decision-
making skills assisted in counteracting the tendency
for staff to control much of resident behavior. Plac-
ing decision making within a broader conceptual
framework, Capitman and Sciegaj (1995) proposed a
contextual autonomy model that focuses on relation-
ships and the context of decision making involving
the individual, other persons, and the social institu-
tion.
Key Words: Long-term care, Case study, Decision
making, Progressive surrogacy
For many residents, life in a nursing facility con-
sists of a repeated daily cycle of predictable activities
occasionally punctuated by a specially scheduled so-
cial event, a visit from “outside,” or the stress of a
health crisis. Over weeks, months, and sometimes
years of residence, the repetitive rhythm and routine
of each day provides a sense of familiarity and regu-
A version of this article was presented at the 52nd Annual Meeting of
The Gerontological Society of America, San Francisco, CA, November 21,
1
9
999. University of Kentucky Institutional Review Board Approval No.
9-22099.
Address correspondence to Celeste Shawler, RN, University of Ken-
tucky College of Nursing, Room 501G, 800 Rose Street, Lexington, KY
4
0536-0232. E-mail: mcshaw0@pop.uky.edu
1
University of Kentucky College of Nursing, Lexington.
2
Department of Geography, Behavioral Science, and Nursing; PhD
Program in Gerontology; and Sanders-Brown Center on Aging, University
of Kentucky, Lexington.
For all its sameness, the routine of institutional life
is dynamic, and so are the decisions that determine
3
Department of Philosophy, University of Kentucky, Lexington.
612
The Gerontologist

this routine. Regular patterns of daily behavior are
gradually and progressively modified as the individ-
ual’s health status and life circumstances change.
With increasing physical frailty and/or cognitive im-
pairment, decisions pertaining to the pattern of daily
life evolve through a complex process of “progres-
sive surrogacy” as control over activities and deci-
sion-making responsibility for those activities gradu-
ally shifts away from the resident toward family
members and staff (High & Rowles, 1995). Indi-
vidual residents may fluctuate through alternative
phases of decline and recovery of decision-making
capacity in various domains but, for the majority, the
overall trajectory is one of reduced involvement in
decisions affecting their lives.
In this article, we document aspects of change in
the decision-making autonomy of a single nursing fa-
cility resident through interpretation of what are, for
her, and for those who surround her, key decision-
making incidents. In this context, an incident is liber-
ally defined as a specific episode requiring a decision,
for example, the determination of where to sit in the
dining room. Such a decision may involve a series of
separate interactions among the resident, family
members, and staff over a number of days, weeks,
or, in some cases, months.
Our objective is threefold. First, insight is provided
into the manner in which an individual’s life in a
nursing facility is shaped by a constantly evolving
decision-making milieu involving the self, family
members, institutional personnel, and implicit, often
taken-for-granted, institutional rules, norms, and ex-
pectations. Second, using a case study approach (Bar-
low & Hersen, 1984; Davis, 1991; Fielding, 1994;
Meier & Pugh, 1986; Stake, 2000), we illustrate the
importance of understanding decision-making pro-
cesses in institutions, as they are uniquely manifest in
the life experience of individual residents and their
families. Finally, we present the argument that de-
tailed understanding of decision making as it pertains
to transitions in a single resident’s life provides a dy-
namic holistic perspective on the nature of their being
in place in the world of the nursing facility.
sion-making constellation was defined operationally
as including the resident, the resident’s physician, the
nursing home administrator, the nurse, the certified
nursing assistant (CNA) having the most daily con-
tact with the resident, and two members of the resi-
dent’s family (including the self-identified primary
caregiver). In some cases, other actors such as a so-
cial worker, minister, or lawyer judged to be in-
volved in decision making pertaining to the resident
were included.
The objective was to explore the changing dy-
namic of family involvement in decision making as
the institutionalized relative became increasingly frail
and, in the case of cognitively impaired persons, pro-
gressively less able to make decisions. Five waves of
interviews (approximately 3 months apart) were con-
ducted with the residents and the members of their
decision-making constellation (see Appendix, Note
1). As interaction with participants occurred over a
3-year period of time, interviews ranged in length
from 30 min to over 4 hr. In some cases, due to the
participant’s health condition or other special cir-
cumstances, interviews were brief. In others, where
the participant became highly involved in the discus-
sion, interviews extended over a considerable time
period. In some cases, including those conducted
with family members in their homes, the interviews
extended to 4 hr.
Individual decisions affecting each resident’s life
were explored within the framework of eight catego-
ries of decisions. These categories were identified on
the basis of a pilot study of two complete constella-
tions. A series of meetings, involving all six research-
ers involved in the larger study (see Appendix, Note
2), were held in which information from the pilot in-
terviews and material developed from extensive re-
view of extant decision-making and nursing facility
literature were used to develop a comprehensive list-
ing of decision categories. The 87 different types of
decisions identified through this process were then
grouped into eight levels of decisions, which re-
mained fixed throughout the study.
According to our a priori criteria, crisis and life-
and-death decisions included foregoing or avoiding
life-sustaining treatment, cardiopulmonary resuscita-
tion, do not resuscitate orders, and intravenous or
tube feeding. Mental competence was defined as in-
cluding guardianship, durable power of attorney,
confusion, and decision-making capacity. Transfer
decisions were defined as including hospitalization,
discharge, or room changes within the facility. Fi-
nancial decisions were defined as including payment
to the nursing facility, “spend-down,” and manage-
ment of income or assets. Medical treatment and
health care were defined as surgery, medication,
physical therapy, occupational therapy, use of assis-
tive devices, and routine health maintenance. Deci-
sions regarding the social environment were defined
to include selection of roommates, resolution of
roommate problems, participation in social activi-
ties, dining arrangements, relationships with other
residents and staff members, and recreational activi-
Methods
Design
The subject of the analysis was a participant in a
-year study funded by the National Institute on Ag-
3
ing (Grant AG-08475; Everard, Rowles & High,
994; High & Rowles, 1995; Rowles, Concotelli, &
1
High, 1996; Rowles & High, 1996). Protection of
subject rights in the 3-year study and in this case
analysis was approved by the University of Kentucky
Institutional Review Board. This longitudinal ethno-
graphic investigation in four nursing facilities in-
volved participant observation, event analysis, and
repeated in-depth tape-recorded interviews with 64
nursing home residents older than 75 years of age
and with members of the constellation of actors in-
volved in their daily lives. For each resident, a deci-
Vol. 41, No. 5, 2001
613

ties. Decisions regarding the physical environment
were defined as those involving arrangement of fur-
niture in a resident’s room; temperature control; dis-
play of personal items; ownership and placement of a
television, radio, or telephone; and room mainte-
nance and cleaning. Finally, daily living decisions
were defined as the timing of activities, access to fa-
cility resources (e.g., the telephone), food choices, se-
lection of clothing, bathing schedule, hair care, main-
tenance of privacy, smoking, kitchen privileges, and
other everyday choices affecting residents’ quality of
life.
Sample components of the protocol provide an in-
dication of the types of questions posed. The first
component involved identification of decisions in the
previous 3 months for each level of decision making.
Acknowledging concerns about the long-term recall
of everyday mundane decisions, such as decisions
about the physical environment and daily living, par-
ticipants were asked to recall decisions made in the
previous month.
Once a decision had been identified, the inter-
viewer used a second component of the protocol to
explore the characteristics and circumstances sur-
rounding the decision and the level of involvement of
each member of the constellation. Probe questions
included: (a) “What decision was made?” (b) “When
did this occur?” (c) “What were the circumstances
that led to this decision?” (d) “Who was involved in
making this decision?” and (e) “How much were you
involved in the decision?” In addition, participants
were asked to describe the process (sequence of
events/meetings) by which the decision was made.
Particular attention was given to the role of family
and friends. Probes here included: (a) “How much
were family members or friends of the resident in-
volved in the decision-making process?” (b) “Which
family member(s) or friend(s) were involved?” and
fluence” of variables (Sandelowski, 1996, p. 526).
“In the rush to find core variables, recurring themes,
and transferable concepts, analysts of qualitative
data too often miss the idiosyncratic, unique, and
non-fungible features of cases that give them their in-
tegrity, and make them so valuable for study” (Sand-
elowski, 1996, p. 525). This perspective is more con-
textually sensitive and discriminating in revealing
nuances of an individual’s institutional life than are
most sample- and population-based studies. Indeed,
we suggest that detailed study of an individual resi-
dent’s life can provide a mirror of broader concerns
regarding the conduct of institutional life (Hunter,
1989; Tanner, Benner, Chesla, & Gordon, 1993): It
facilitates the translation and representation of per-
sonal troubles as societal concerns (Mills, 1959).
We selected an individual rather than a particular
facility location or time period as the unit of analysis
because we were concerned with viewing decision-
making processes surrounding and involving individ-
ual residents within a holistic context. The life of a
nursing home resident, such as Edna, tends to be fo-
cused on the limited number of individuals with
whom he or she comes into routine daily contact. In
contrast with community-dwelling elders, nursing
facility residents tend to inhabit a naturally bounded
behavioral and social world that can be both concep-
tually and operationally defined. Hence, we deter-
mined that it was appropriate not only method-
ologically but also substantively to focus on the
individual.
Edna was selected because she was cognitively in-
tact and was particularly articulate throughout the
entire study. There were five interviews with Edna
herself, as well as a complete set of interviews with
several members of her decision-making constella-
tion over the 15 months of data collection. Many
residents were cognitively impaired at the beginning
of the study or developed memory difficulties or
physical ailments that prevented them from complet-
ing five interviews. We now turn our attention to
Edna and to the decisions affecting her life in a nurs-
ing facility.
(
c) “How were they involved?”
The next section of the protocol addressed the in-
volvement of staff. Participants were asked, “Did
any member of the staff who was unrelated to the
resident act like a family member?” They were also
asked to comment on how they felt about the deci-
sion and the degree to which family members were
involved. The same overall protocol was used for
each participant with only minor and necessary word
changes to make the protocol appropriate for each
person interviewed.
Case Study: Edna
Edna Wishart was born in rural Fenton County
and lived there for nearly 60 of her 88 years. She
taught school for 34 years. Married for 58 years, she
had one daughter, Joyce, a son-in-law, and a grand-
daughter. As Edna entered her 80s, her health and
that of her husband, Albert, declined. Following sev-
eral acute illness episodes resulting in hospitalization,
the couple moved together into a nursing facility in
Gloucester, the county seat.
This arrangement worked well until Albert’s
health began to decline more rapidly and he needed
cancer treatment that could not be provided by the
facility. At this point, Joyce arranged for her parents
to move to Concord (Joyce’s hometown, about 1.5
hr from Gloucester), where Albert entered a nursing
facility providing a higher level of care. Edna moved
Analyses of the complete data set are reported
elsewhere (see Everard et al., 1994; High & Rowles,
1
995; Rowles & High, 1996, in press). At this point,
we have begun in-depth review and analyses of the
decision-making experiences of individual residents
to provide a holistic perspective on their immersion
within the nursing home milieu. Edna is one of these
residents (see Appendix, Note 3). Our study of Edna
was undertaken in order to investigate and under-
stand, in detail, the life of one resident viewed within
the context of her decision-making constellation. In
studying a single nursing home resident, we were
concerned with the “confluence” rather than the “in-
614
The Gerontologist

in with her daughter. This arrangement was a tempo-
rary solution, allowing time for Joyce to arrange for
her parents to be in a room together in another Con-
cord nursing facility, Elizabeth Manor. “We closed
up everything in Gloucester (their lifetime home),
auctioned it, kind of closed that chapter for her.”
Shortly after the couple moved to Elizabeth Man-
or, Albert died. Edna left the facility, once again
spent a few months living with her daughter, and
subsequently moved to an assisted living facility. Af-
ter an acute episode with a bleeding ulcer, she re-
turned to Elizabeth Manor where, at the commence-
ment of our study, she had been in residence for
almost 2 years. Against the backdrop of this profile
of Edna’s personal history and life circumstances, we
offer an analysis of the institutional decision-making
context and processes of decision making that
shaped her life in Elizabeth Manor.
description to more abstract and higher levels of un-
derstanding and insight. Table 1 provides examples
of the progression of coding and theme identification
from participant statements, through the detection of
themes, to higher and more abstract levels of re-
vealed meaning.
Findings
Overview
Overall, the pattern of decisions made affecting
Edna reflected the partial and ephemeral involve-
ment of diverse members of her constellation in dif-
ferent decision-making incidents at different points
during her tenure at Elizabeth Manor. The nursing
home administrator was involved in few of the every-
day decisions directly affecting Edna’s quality of life.
Pat, the social worker, was involved in some catego-
ries of decisions and was a significant participant in
the decision-making process surrounding Edna’s de-
sire for a room change. Joyce was more fully and
continuously involved in multiple categories of deci-
sion making regarding Edna, although she seemed to
have a “snapshot” view of her mother’s life in the
nursing home derived from visits of about 1 hr two
or three times a week. More intimately involved on
an ongoing basis were the nurse and especially the
CNA, who spent the most time in direct contact with
Edna. Finally, as was revealed through the series of
interviews, Edna herself felt ambivalent and progres-
sively less involved in decisions affecting her life as
time passed. In the initial interview, she clearly indi-
cated her active role in the decision to enter the fa-
cility.
Analyzing the Data
Data collected on Edna comprised a total of 28 in-
terviews: 5 each with Edna and her daughter and 6
with the nurse, the CNA (see Appendix, Note 4), and
the administrator/social worker. Each interview was
transcribed verbatim. First, Edna’s transcripts and
those of each member of her decision-making con-
stellation were read. An initial line-by-line coding
generated many categories. These categories served
to inform our subsequent analysis of interviews and
transcripts. Then coding was completed for each ac-
tor in the constellation to characterize that person’s
role in decision making involving Edna. A second
phase of analysis involved organizing and reading
the transcripts in chronological sequence (Wolcott,
1
994) in order to obtain a sense of the unfolding of
I didn’t want to stay with my daughter . . . . They
both work and I just feel like they have their friends
and they’re just as good to me. I stayed down there 3
months. I just felt like I was kind a fifth wheel.
decision-making events during Edna’s residence as
they occurred over time. Again, line-by-line coding
was used to identify categories and retrieve chunks of
data pertaining to specific emerging themes. Third,
the conceptual framework of the eight decision-mak-
ing categories provided a guide to analyze the data.
Worksheets were developed to summarize the data
concerning each of the eight main categories of deci-
sion making. However, we were also attentive and
sensitive to additional themes that emerged in addi-
tion to those revealed within the rubric of the eight
decision-making categories. A final phase in data
analysis involved detailed discussion among us about
the data and emergent categories and themes. Efforts
were made to progressively move the analysis from
But by the final interview, her growing ambivalence
and passivity were evident from an equivocal and
pensive response to the question of the degree to
which she had been adequately involved in decisions.
“I guess I have. If it had been left up to me? If I’d
have made the same decisions that have been made
or not? . . . I’ve accepted them. Let’s just say I’ve ac-
cepted them.”
As our analysis proceeded, themes of temporal
change, spatial context, interdependency, and aware-
ness in decision making emerged as major compo-
Table 1. Coding
Second Level: Themes
First Level: Participant Statements
Third Level: Revealed Meaning
“
“
“
I just want to move.”
Temporal
Spatial
Honor my preferences while I can express them.
I need my own personal space, especially at mealtimes.
Somebody’s sitting in my seat.”
They just came and told me . . . . They don’t ask you
nothing. They just come and tell you what you are
going to do.”
Interdependence
Awareness
My involvement in decision making is slipping away.
I’d rather know what is going on.
“
I’d rather know what is going on.”
Vol. 41, No. 5, 2001
615

nents of the decision-making trajectory that shaped
Edna’s life in Elizabeth Manor. All four decision-
making foci serve as exemplars of more general
themes posited to underlie the process of progressive
surrogacy in nursing facility decision making.
gust 17, 1992). (In fact, moving to a semiprivate
room would not have halved the cost, but differing
interpretations of this issue confounded and compli-
cated the decision-making process for Edna, Joyce,
and Pat.)
Nearly 1 year after Edna’s initial request, she was
finally transferred from her private room to a semi-
private room after she reached her spend-down limit
and became a Medicaid recipient. Pat shows in an in-
terview conducted about this time:
Honor My Preferences While I Can Express Them:
Temporal Theme
“
I just want to move.”—The scenario began with a
simple request from Edna, “I just want to move,” re-
ported by Pat, the social worker (November 20,
The major decision in the last 3 months? To transfer
from one room to another, from a private to a semi-
private. You probably have this, what’s funny, well,
it’s not funny but what’s interesting is you probably
have the same interview information way back
when, when she wanted to move and we didn’t think
she should and now I wish we would have let her
move . . . . I’ve learned my lesson to listen to the res-
idents (November 13, 1992).
1
991). Pat talked with Edna and probed to find the
rationale for her request to move to Room 16 (from
a private to a semiprivate room). Aware of Edna’s fi-
nancial situation, Pat thought money might be the
reason. Pat then talked with Joyce and explained that
she thought there would be conflict with the current
resident of the room.
Joyce added another dimension to this picture. In
an interview approximately 2 months (January 29,
1
992) after her initial discussion with Pat, she re-
Three weeks later, Joyce also expressed regret
about not listening to her mother’s initial request and
the missed opportunity for autonomous decision
making and respect for Edna’s self-determination.
ported, “Mom decided a private room was too costly
so she started scouting around looking for openings,
rooms, semiprivates. She initiated the discussion with
Pat.” During this interview, Joyce reiterated that her
mother was “private pay” and was aware she needed
to make her money last as long as possible. Joyce
confirmed that Edna did, indeed, find a room—
Room 16—which happened to be where she and Al-
bert had resided when they first entered the facility,
and the room where he had died. Joyce reported,
Now she’s a Medicaid patient . . . . I think it would
have been better if she’d gone ahead and moved at
that time [initial request] . . . . Pat told me she
learned a lot from this experience . . . and the fact
that she needed to listen to residents more . . . . It
was hard to figure out her thinking on that [finan-
cial], but the fact . . . is that there was a bed avail-
able. It was over by the window and it was the room
she and Dad were in. Now that was my problem
with the room . . . . Well, she’d be in the bed where
Dad was . . . . I think it would have been [hard on
her] and Pat did too, once we talked about that. She
Pat was a little bit concerned about the person she’d
be in the room with, but Pat did not say, “Don’t do
it.” She just said, “Let’s think about it a little bit
longer and let’s see, you know, what comes, what
happens, what develops.” Pat and I talked and Pat
expressed the concerns that she had also expressed
to Mom about the lady who’s in the room not being
coherent and not being, perhaps, a suitable room-
mate for Mom. I also reminded her that Mom likes
the privacy of her bathroom and that she would have
to share a bath if she went to another room. (Janu-
ary 29, 1992)
[
Pat] was also concerned about her being in the
room. Pat wants her to be in a room with someone
who’s coherent . . . . The important thing about this
is that Mom made the decision. She was ready to
move [initially] and we took it away from her. And
that is why Pat said we both learned. We should
have let her; that was very important to her and we
just took it away (December 4, 1992).
Following this conversation, Pat and Joyce talked
Edna out of moving to Room 16.
Surprisingly, Edna herself provides yet another
perspective on this room change decision-making
process. What was critical to her about Room 16
was her knowledge of space in the room, particularly
the bathroom. She also expressed her loneliness in a
private room, yet staff reported how Edna seemed to
like privacy and often stayed in her room. In an in-
terview when she finally moved (as it turned out,
into another private room), Edna reflected on the ex-
perience.
The three of us never sat down and talked. Pat
talked with Mom quite a bit and then I talked with
both of them, but we did not sit down as a three-
some. So Mom decided that she would wait and
Pat’s concern was that if all of the rooms become
Medicare approved, if Mom’s money, since she’s on
spend-down now, that she would not have to move.
That was what Pat was hoping, you know, that she’d
be able to stay in the room she’s in.
The girls helped me move . . . . Oh, I just moved here
Several months after this interview, Joyce con-
firmed her mother’s continuing concern about mov-
ing to a semiprivate room to perhaps save money.
[
present room]. I wanted to move back over in 16,
over on the other wing, and she [Pat] came in here
and talked me out of it . . . . They didn’t know I’d get
along with the one that was in the room or not and I
don’t know but I would have and so she said, well,
“
She’s had this idea some time that if she moved to
[
a] semiprivate room it would be half the cost” (Au-
616
The Gerontologist

I’m not going to bother you anymore. She, Pat, told
me that she saw where she didn’t listen to the resi-
dent and made her own decision. If she had listened
to me, it would have been better if I moved over
there. I didn’t want this high-priced room. I didn’t
care about being by myself. I didn’t care about stay-
ing by myself. It got kinda boresome sometimes. And
I’d been in that room over there [16] and I knew I
could get around, how to manage, and there was just
two people using the bathroom and nobody else, and
it was a larger bathroom, too (December 1, 1992).
patients and staff. Edna herself reported, “Well I just
moved around. I’d go in and they’d be in the place
where I sat. Someone would be there and I’d go to
another place . . . . I think I moved three times.”
Edna’s flexibility was perceived by staff as indicative
of increasing sociability. As the CNA noted, “Lately
she’s been changing her seating. She’s kind of been
socializing a little bit.” The nurse who worked most
closely with Edna also confirmed that: “She’s been a
little more social. She still sits at the same place but
we have a new resident who is ‘with it’ and she and
Edna sit together and talk.”
Not all the members of Edna’s decision-making
constellation were as perceptive regarding her spatial
preferences. Pat admitted she was neither involved
nor at all enlightened about the process of decision
making for seating arrangements.
Viewed in a longitudinal context, this was a situa-
tion in which Edna tried to be proactive. She had in-
timate knowledge of the layout of Room 16 because
she had shared it with her husband. She knew she
would only have to share the bathroom with one
other person. Both factors were important to her.
However, Edna found that she had little say in the
move. Only after the fact did Pat and Joyce realize
that Edna had sound personal and practical reasons
for her request.
I got the whole seating arrangement in the whole
place mixed up. It’s amazing what these sitters
[
CNAs] know. I’m not sure why [they sit people
where they do]; they may know, but just don’t tell
me. Or I just don’t ask the right questions.
I Need My Own Personal Space, Especially at
Mealtimes: Spatial Theme
Joyce was similarly mystified, although she acknowl-
edged the importance of seating arrangements. “It
does somehow [get decided] because they all have
their space and it’s just interesting.”
“Somebody’s sitting in my seat.”—Decisions in nurs-
ing facilities are made not only over time but also in
space. Indeed, time and space are intimately interre-
lated, as was clearly revealed in the room change de-
cision. A number of decisions pertinent to Edna’s life
concerned her use of space in Elizabeth Manor. Like
most of Elizabeth Manor’s residents, Edna was con-
cerned with seating arrangements. Seating arrange-
ments, especially for mealtimes, involved complex,
partly implicit, and generally taken-for-granted norms
and rules of behavior that were part of the ritual and
culture of Elizabeth Manor. The identity of this envi-
ronment as a behavior setting (Barker, 1968; Norris-
Baker, 1998) depended on conformation to the es-
tablished patterns.
As with decisions about room changes, there were
divergent opinions about who made decisions con-
cerning seating arrangements in the dining room at
Elizabeth Manor, and the process whereby such deci-
sions were made. On one hand, Edna felt she made
her own choices about where to sit. On the other
hand, as Edna’s nurse stated, “We [nurses and assis-
tants] kind of make the decisions [regarding seating
for residents] between us.” She explained that the
nurses are concerned about the residents’ food in-
take, thus they readjust seating arrangements to en-
hance food consumption: “The staff were trying to
find a spot for Mary, who was not eating well. But
putting Mary and Edna together did not work. Edna
left the table.” In this case, the defining factor is the
decision-making capability of Edna herself. She is
mobile in her wheelchair and her cognitive abilities
are intact, so she exerts more choice in her seating ar-
rangements than many of her fellow residents.
Disruption of established territorial imperatives
could occur quickly and be a source of considerable
distress to residents. The nurse who worked most
closely with Edna reported that, on at least one occa-
sion, Edna had been adamant about her position at
her table in the dining room. “Somebody’s sitting in
my seat and I’ve been there for 2 years. I don’t like
it.” The CNA who spent the most time with Edna
made a similar observation: “The only thing she gets
upset about is, if the seating arrangements [have]
been changed at her table. She outwardly seems like
she likes everybody, but you can tell from her atti-
tude and eyes she doesn’t care for someone.” As
Edna’s daughter, Joyce, explained, “You don’t real-
ize what a big deal it is of who’s going to be sitting
where at meals. It’s a big deal, you know. I guess
we’re creatures of habit.” As residents possess so lit-
tle, the importance of predictability of places at the
eating table may become critical in the daily life of
nursing home residents.
My Involvement in Decision Making Is Slipping Away:
Interdependence Theme
“They just came and told me . . . . They don’t ask
you nothing. They just come and tell you what you are
going to do.”—A changing pattern of interdepen-
dence, both across decisions and among decision
makers, in negotiating transitions in Edna’s deci-
sional autonomy is illustrated by analysis of inci-
dents pertaining to her medical treatment and health
care. Decisions about Edna’s health care, medicines,
and needed diagnostic procedures became increas-
ingly prevalent over the 15 months of the study. The
pattern was consistent with a trajectory of growing
Paradoxically, the interviews acknowledging terri-
toriality also revealed flexibility and adaptability of
Vol. 41, No. 5, 2001
617

decisional dependency as her health declined. The
degree to which this represented a voluntary rather
than an implicitly enforced trend resulting from be-
nign concern on the part of staff is unclear. It
emerged that decision making involved a progres-
sively increasing degree of interdependency, both of
actual decisions and among decision makers, in her
decision-making constellation, as the various actors
in Edna’s life tried to adjust with sensitivity to her
declining capabilities.
During the first round of interviews, Edna was rel-
atively healthy, according to most members of her
decision-making constellation. But by the fifth round
of interviews, Edna had experienced a kidney infec-
tion (resolved with antibiotics), a bout of pneumonia
from which she did not seem to fully recover, and a
period when she was obliged to wear an incontinence
protective undergarment.
ing accidents all over and she was getting a bit frus-
trated. So I talked to her. I suggested that maybe she
might want to start wearing Attends, temporarily,
until she gets so much fluid out of her.
Joyce may have viewed wearing the incontinence
protective undergarment as temporary. Yet, in all
probability, given her declining level of cardiac func-
tioning, Edna’s ability to clear fluids was likely to be-
come an ongoing challenge. The CNA most responsi-
ble for Edna’s care also gave a supportive rendition
of her role in gently negotiating this decision-making
situation.
I just tried to take care of it as professionally as pos-
sible because I know incontinence is, you know, kind
of embarrassing, so . . . something to do with self-
confidence . . . try to keep her from being embar-
rassed, you know, having to wear them. Dignity . . .
One outcome of these episodes was that, after
each one, it took Edna longer to return to her previ-
ous level of functioning. More important to the focus
of this study was Edna’s changing role in making de-
cisions affecting her physical well-being as her illness
episodes accumulated and her frailty increased. As
time passed, Edna’s involvement was marginalized as
her autonomous daily health care decision making
met with progressively less support and cooperation
from other members of the decision-making constel-
lation. This was exemplified at the time of a visit to
her brother. Edna’s nurse reported, “She refused her
Lasix because she was going to her brother’s and
didn’t know if she could get to the bathroom OK.”
Taking Lasix, being confined to a wheelchair, and
getting quickly to a bathroom are not always com-
patible. Indeed, this presented a daily challenge for
Edna. Consequently, she exerted her own decisional
independence in deciding not to take the medication
on this particular day. As the nurse said, “Edna flat-
out refused.” Had Edna still been in her own home,
she most likely would have self-regulated her medi-
cation for this outing with her brother. However, in
an institution in which adherence to medication or-
ders is considered a priority, decision-making auton-
omy was viewed negatively as a “patient refusal”
rather than an expression of independence.
It is important to acknowledge the magnitude of a
decision to wear an incontinence protective under-
garment. In many respects, it represents a turning
point widely recognized at Elizabeth Manor as a
marker of dependency. It is significant that Edna
never mentioned wearing incontinence protective un-
dergarments although she did admit, “I had the flu. I
was very sick and got IVs. I didn’t remember a lot of
things. The doctors and nurses told me things.”
Understanding the delicate interdependence of
people comprising Edna’s decision-making constella-
tion (including Edna herself) as they negotiate differ-
ent situations is facilitated by viewing individual inci-
dents within the broader context of the trajectory of
her life as a resident of Elizabeth Manor. Individual
decision-making incidents are part of a mosaic of in-
terrelated changes that mark the resident’s evolving
status. Each decision involving Edna, in the benignly
controlling cultural milieu of the nursing facility, was
subtly related to every other decision because the
same actors were generally involved. Moreover, each
decision provides a template for framing subsequent
decisions within the trajectory of a resident’s life.
For example, Edna’s episode of pneumonia oc-
curred after her room change. As the nurse reported,
As Edna became more vulnerable as a result of ill-
ness episodes, her decision-making autonomy was in-
creasingly threatened. Her need to take large doses of
Lasix made it increasingly difficult to get to the bath-
room without assistance and without episodes of in-
continence. On the surface, the staff and Joyce tried
to respect Edna’s personhood, to treat her with dig-
nity, and to sustain her decision-making autonomy
as much as possible. Indeed, there was evidence of
hesitancy and discomfort on Joyce’s part as she tried
to sensitively negotiate this situation and make a de-
cision for her mother and yet maintain her mother’s
sense of autonomy.
First, she got very sick. She had pneumonia. She
needed IV antibiotics because she was so nauseated
she couldn’t keep the oral medication down. She was
pretty bad for about 2 weeks . . . . I think it all had to
do with [her] room change and her sickness, because
for a while we had to take her to the bathroom and
Edna’s always done that for herself. Well, now she’s
gotten back to where she’s taking herself to the bath-
room and she’s not wearing Depends anymore, so I
think it was a temporary thing due to her sickness
and all that room change.
Another factor contributing to Edna’s pneumonia
and to her physical decline was identified by Joyce.
“She started wearing Attends, about 1 month ago.
It was soon after Mrs. Baumhover’s death.” Mrs.
Mom complained about pain in her legs, and the
doctor ordered massive doses of fluid pills. Mom
was trying to get to the bathroom, but we were hav-
618
The Gerontologist

Baumhover was a resident with whom Edna had de-
veloped a strong friendship. She had stayed at Mrs.
Baumhover’s bedside for days while she died. Joyce
and the CNA were the only members of her decision-
making constellation who reported on this experi-
ence. As Joyce expressed,
would completely lose her sight in that eye as well.
This example of withholding information was per-
haps well intentioned but reflects the manner in
which decisions began to be made without the in-
volvement of the nursing home resident. This inci-
dent is especially poignant because Edna herself was
aware of the degree to which decision-making auton-
omy was being benignly removed from her as she be-
came more frail and vulnerable. As she noted on
more than one occasion, “I’d rather know what was
going on.”
She sat with her . . . . In those last days I think Mom
spent most of the time holding her hand and talking
with her. The night Mrs. Baumhover died, Mom told
me they wanted her out of the room but she told
them no, that she was on her side, and they had the
curtains closed and she held her hand. It was really
sweet, you know. I told her, I said, sometimes, Mom,
we don’t know where we’re placed—that maybe
we’re there for a reason. And Mrs. Baumhover’s
daughter was sick and her granddaughter could not
be there, so after the death she got this touching note
from both the daughter and the granddaughter.
Discussion
In this case study, we identified features of the
processes whereby decisions were made affecting the
quality of life of a single nursing home resident.
These decisions were made within a specific physical
and cultural space—the nursing facility—that sup-
ported an implicit, often taken-for-granted decision-
making milieu. Decisions affecting Edna were made
in the context of a constantly evolving interdepen-
dency between Edna and those who surrounded her.
Each member of Edna’s decision-making constella-
tion had a different level of awareness (or lack of
awareness) of her needs and aspirations. Each, in-
cluding Edna herself, held a different view of the rel-
ative importance of particular choices affecting her
life. Each held a different image of her capabilities.
And each was involved, to a differing degree and
with a differing level of intensity over the course of
time, in the various domains of her life at Elizabeth
Manor.
Our strong impression is that all the people in-
volved in Edna’s life at Elizabeth Manor had her best
interests at heart. Their involvement in decisions,
however, sometimes more reflected of institutional,
professional, and personal norms and expectations
than fully informed understanding of Edna’s wishes.
Within this rubric, our descriptive analysis pro-
vides insight into the manner in which decision-mak-
ing processes in nursing facilities contribute to pro-
gressive surrogacy as resident frailty increases. In
most cases, this process is benign. It embraces
change, often a gradual and subtle movement toward
increased dependency in the interdependent relation-
ship between the resident and members of his or her
decision-making constellation (Lowry, 1989). Such a
transition is appropriate when the resident is cogni-
tively impaired or becomes increasingly impaired
over the course of residence. In such cases, there is
generally clear evidence of an individual’s inability to
make decisions with respect to specific domains of
life.
As the CNA noted, “The death of Mrs. Baum-
hover was very hard on Edna.” She attributed Edna’s
decline in health and her pneumonia to difficulties
coping with her room change, the stress of the last
days of her relationship with Mrs. Baumhover, and
associated strain on her adaptive capabilities.
I’d Rather Know What Was Going On:
Awareness Theme
“I’d rather know what was going on.”—Another de-
cision-making incident associated with Edna’s physi-
cal decline and change in the nature of her inter-
dependence with those around her involved the
deterioration of her eyesight. As Joyce explained,
She started, probably in April, mentioning that she
was having some trouble seeing with this, this left
eye. But she was going to wait till I got out of school
[
Joyce is a schoolteacher] before we did something
about it. Then I think the first of May she was notic-
ing a noticeable difference. She talked to the [physi-
cian assistant] . . . and the next thing I know she had
an ophthalmologist appointment for May 19.
What occurred at this appointment provides a
clear illustration of the subtle, sometimes unknowing
ways in which decisional autonomy is wrested from
nursing facility residents as their frailty increases.
Edna was very pleased with the ophthalmologist. He
took lots of time to explain to her, in the presence of
her daughter, what was going on with her vision.
When she asked about surgery for the cataract on
her “good” eye, the ophthalmologist indicated that
this could wait a while. He gave Edna a chart she
could look at to determine if she was experiencing
further deterioration and suggested that he be called
immediately if significant change was noted. This
level of concern was greatly appreciated by Edna.
But she had not been given the complete story. What
the ophthalmologist reported separately to Joyce was
that her mother was experiencing macular degenera-
tion in the good eye, too, and in a matter of time
Our analysis of Edna, who was not cognitively im-
paired except for a brief period during an episode of
pneumonia, suggests that removal from decision-
making autonomy may be a generic feature of nurs-
ing facility life. In spite of increased awareness of
the perils of “total institutionalization” (Goffman,
1961), it appears that an ethos of benign progressive
surrogacy and the erosion of resident autonomy re-
Vol. 41, No. 5, 2001
619

mains ingrained in nursing home culture in ways un-
related to cognitive functioning (Agich, 1993; Kane
residents with regard to decisions affecting their lives
to be more widely and routinely acknowledged and
integrated within the daily life of nursing facilities
(Evans, 1996). Future directions in individualized
care might include a willingness to more readily ac-
knowledge the face-value legitimacy of cognitively
intact residents’ statements and requests. Even if resi-
dents are compromised in some aspects of their self-
responsibility and decision-making capability (e.g.,
with regard to financial matters), they should still
have a say about what they wear, where they sit at
meals, and how their possessions are arranged in
their rooms. It is critical to acknowledge that deci-
sional impairment is a multilevel concept; residents
may remain fully capable of making decisions in
some domains of their lives although decision-mak-
ing ability in other domains may be compromised.
Moreover, as Capitman and Sciegaj (1995) noted,
even persons with cognitive or psychiatric disabilities
have life-long habits of self-care and continuing pref-
erences about daily tasks that may make the indigni-
ties often associated with professional care even
harder to endure. Such habits can be mapped and ex-
plicitly incorporated into care plans (Happ et al.,
1996). Such mapping may be facilitated by consis-
tent staff assignment to specific residents, allowing
aides to develop awareness of each resident’s capa-
bilities and potential and enabling them to work out
idiosyncratic ways of getting things done in a manner
consistent with residents’ abilities and preferences
(Lustbader, 1996).
Most important is the need to assiduously work
toward the creation of decision-making environ-
ments in nursing facilities that explicitly establish an
ambiance of supportive and consultative interdepen-
dence. Rather than kindly paternalistic care that re-
inforces learned dependency, there is a need for an
ethos of care focused on maximizing individual
potential. Vogelpohl, Beck, Heacock, and Mercer
(1996, p. 42) found in their study of dressing behav-
iors that “caregivers contribute to loss of functional
performance and dependency in cognitively impaired
persons when they ‘do for,’ that is dress the person
instead of supporting independence in dressing.”
Kayser-Jones (1996) emphasized the importance of
an individualized care-oriented milieu for eating.
&
Caplan, 1990; Lidz, Fischer, & Arnold, 1992).
However, erosion of resident autonomy related to
cognitive functioning is not ethical and must be chal-
lenged. There is realization and justification of the
importance of resident autonomy in decision mak-
ing. Programs to enhance caregivers’ sensitivity to
residents’ concerns (Kelly & Lazaroff, 1993) and
models to create a community of caring that is au-
tonomy enhancing (Roth & Harrison, 1994) are ex-
amples to catalyze change. Even though respect for
autonomy is realized and acknowledged, action is
not always initiated. For example, Whitler (1996) re-
ported that although nurses described specific ways
to preserve and enhance personal autonomy, they
did not use these strategies in their daily practice.
However, bridging this gap between awareness and
action is critical to preserve autonomy in elderly indi-
viduals. It is hoped that this case study about Edna
will become part of this catalytic change so that insti-
tutionalized elders can remain autonomous as much
as they are able for as long as possible.
There are limitations with respect to the degree to
which case study findings that reflect Edna’s experi-
ence can be generalized to the complete sample of 64
constellations involved in our study, or inform us
about nursing facility populations in general. For ex-
ample, during our interviews elderly residents may
have become fatigued to the point that they were not
able to give a full account of the intricacies of their
decision-making experiences. Edna and the other res-
idents, as well as the other individuals in their deci-
sion-making constellations, may not have recognized
all of the decisions (both implicit and explicit) that
were actually made. The data almost certainly do not
capture the full array and subtle complexity of all
possible decisions affecting each resident. Partici-
pants may also have felt that it was more relevant to
focus on major life and death decisions than to go
into everyday decisions, even though such decisions
may have been important for their quality of every-
day life. Further in-depth case studies of individual
nursing facility residents and their involvement in de-
cision-making situations could considerably add to
the body of knowledge about decision making in a
nursing facility. Such studies should also focus on
those who are cognitively impaired.
By educating nursing assistants on how to provide
individualized care at mealtime and ensuring that an
adequate number of staff are available to assist those
who need help, mealtime rather than being a task
oriented procedure will be an individualized, pleas-
ant social event. (Kayser-Jones, 1996, p. 31)
Even in the absence of such studies, Edna’s case pro-
vides a mirror of broad concerns regarding the conduct
of institutional life by clearly demonstrating that al-
though she was competent and cognitively intact, her
decision-making autonomy was not fully acknowl-
edged. The staff and Edna’s daughter did make at-
tempts to involve Edna, to listen to her. But Edna’s
voice was not heard and was not viewed as a critical el-
ement of decision making affecting her life. This is a re-
flection of the propensity of most nursing facilities to
remain institution rather than resident centered (Happ,
Williams, Strumpf, & Burger, 1996; Lustbader, 1996).
A shift in orientation toward a person-centered
philosophy allows the experiences and preferences of
Staff education initiatives that reinforce internal-
ization of a basic orientation toward listening to resi-
dents, toward hearing what they say, and toward
maximizing their decisional autonomy also offer the
prospect of a more resident-centered nursing facility
environment (Roberto, Wacker, Jewell, & Rickard,
1997; Smyer & Allen, 1999). However, the reality of
the staffing situation must be acknowledged. The
620
The Gerontologist

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Received November 16, 2000
Accepted June 22, 2001
Decision Editor: Laurence G. Branch, PhD
Vol. 41, No. 5, 2001
621

Appendix
2. In addition to the principal investigator and co-
principal investigator, four graduate assistants
were involved in the derivation of decision-mak-
ing categories, in conducting interviews, and in
participant observation. Each graduate assistant
spent 10 hr per week in the facility to which he or
she was assigned over a period of 3 years. Thanks
are due to Beth Adkins, James Concotelli, Kelly
Everard, and Juliana McDonald for their assis-
tance in this component of the study.
Notes
1
. Although we did not collect information on resi-
dents whose stay was anticipated to be brief, we
presume that those who were in a facility for re-
habilitation and recuperation from an acute ill-
ness episode may have had more decisional au-
tonomy. Their expected release from the nursing
home and return to independent or somewhat
independent living may have given them in-
creased status and power in decision making. On
the other hand, if the individual was admitted to
the nursing home at the end stages of life, deci-
sion-making capacity would most likely be lim-
ited.
3. All identifying proper names in this article are
pseudonyms.
4. A staff change during the data collection meant
that we interviewed two CNAs.
622
The Gerontologist