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JOURNAL OF PALLIATIVE MEDICINE
Volume 10, Number 5, 2007
© Mary Ann Liebert, Inc.
DOI: 10.1089/jpm.2006.0263
Quality of Death: A Dimensional Analysis
of Palliative Care in the Nursing Home
REBECCA L. TROTTA, M.S.N., R.N.
ABSTRACT
Palliative care in nursing homes is increasingly discussed, investigated, and implemented, yet the term
lacks conceptual clarity and definition. Furthermore, the components, process, and outcomes of pal-
liative care as it is delivered in the nursing home have not been clearly articulated. This paper provides
a dimensional analysis of palliative care in the nursing home to elucidate the concept and its context
and consequences, as portrayed through available literature. As a method, dimensional analysis is rooted
in symbolic interaction and grounded theory. As such, it provides a useful tool with which to analyze
existing literature on palliative care in the nursing home. In this dimensional analysis, communication
is the dominant perspective of palliative care in the nursing home. This analysis demonstrates that the
consequences of palliative care in the nursing home are personhood and identity, and quality of death
rather than quality of life. These consequences suggest that the focus of palliative care should be on the
nursing home resident and the dying experience, rather than quality of life and issues around living
that exclude the dying experience and do not acknowledge the personhood and identity of the resident.
These elements represent a shift in focus away from one that does not include death, toward the dying
experience, and that such a change in focus is necessary to achieve palliative care in the nursing home.
Finally, the analysis elucidates potential outcome measures for the study of palliative care in nursing
homes and outlines possibilities for further research.
1116
INTRODUCTION
U
NDERSTANDING CARE
of the dying in nursing
homes is mandated both by demographics and
morality in an aging society. Palliative care is a widely
used term used to describe all that encompasses hu-
mane care of the dying. Yet because of its socially con-
structed nature, the meaning and dimensions of pal-
liative care are not well articulated in the literature,
particularly the literature concerned with the nursing
home setting. Recognition and facilitation of the dy-
ing process is physically and psychologically complex,
and there is considerable ambiguity surrounding what
constitutes appropriate care of the dying.
Currently, approximately 1.6 million Americans
live in nursing homes,
1
and an estimated 20% of Amer-
icans die there.
2
As the population continues to live
longer with multiple chronic illnesses such as Alzhei-
mer’s disease, chronic obstructive pulmonary disease,
cancer, and cardiovascular disease, attention to palli-
ation in the nursing home setting is of utmost impor-
tance. Although this phenomenon is not unique to the
nursing home setting, this setting is the focus for this
discussion.
BACKGROUND AND SIGNIFICANCE
Several themes dominate existing literature on pal-
liative care. These themes include, but are not limited
to, preferences, decision making, prognosis, and pol-
icy issues. They have been explored in various set-
Hartford Center of Geriatric Nursing Excellence, University of Pennsylvania School of Nursing, Philadelphia, Pennsylvania.
tings, and among various populations of frail elderly,
most notably those with cancer, congestive heart fail-
ure (CHF), or dementia.
3–6
Additionally, the literature
regarding palliative care is often blurred with hospice.
This can lead to confusion about their distinctive com-
ponents and hinder the understanding of each.
Steinhauser and colleagues
5
found that patients,
families, physicians, and other care providers over-
whelmingly preferred to focus on pain and symptom
management, and patients stressed the importance of
constant communication and being mentally aware.
Ziad and colleagues
6
found that the care plans for those
with dementia were more likely to focus on symptom
relief and anticipation of dying than those with CHF.
These studies demonstrate that interventions for pal-
liative care tend to focus on symptom management and
relief, but that patients primarily value communication
at the end of life.
Decision making naturally follows elicitation of
preferences. Boockvar and Meier
4
used a case study
approach with the hypothesis that decision making
around goals of care should begin when the patient is
designated as frail. They conclude that as frailty pro-
gresses, palliative care focused on symptom relief and
quality of life should be instituted. The case study
highlights the complexity clinicians must face in de-
termining frailty and the relative proximity to end of
life, and the subsequent events that will take place.
This complexity is a common theme in the end of life
decision-making literature, especially as it relates to
palliative care.
7–12
Lorenz and colleagues
3
outline important policy is-
sues at the end of life, many of which touch on the
themes stated above. They discuss the limitations of
prognostication, which include both provider ability
and willingness. Lorenz and colleagues
3
also review
the policy implications of measuring quality of end-
of-life care, focusing on structure, process, and out-
comes. Similarly, Ferrell
13
states that the lack of
clearly defined outcome variables with respect to re-
search on care of the dying has hindered advancement
of the science thus far. She stresses the importance of
defining relevant outcome variables and clarification
of concepts, especially in light of the rapid growth of
palliative care and hospice programs.
Hospice, with its specific criteria based on terminal
status and Medicare eligibility, is generally well defined,
at least in a regulatory sense. Conversely, palliative care
is more nebulous, because it lacks regulatory criteria and
other policy markers of acceptance.
14–17
Furthermore,
the increasing presence of hospice in nursing homes
contributes to confusion about the scope of palliative
care, especially nomenclature and documentation of
care. Although many similarities exist between hos-
pice and palliative care, hospice is not necessary for
palliative care to occur, while the converse relation-
ship is required. As a result, the presence of both hos-
pice and palliative care in nursing homes renders pal-
liative care unclear and makes articulation of its
components difficult.
The existing literature on palliative care as de-
scribed above covers broad themes and crosses many
settings and diseases. Although the knowledge base
concerning palliative care is growing, a theoretical
synthesis of the literature specifically focusing on pal-
liative care delivery in the nursing home setting is ab-
sent. This paper provides a dimensional analysis of
palliative care in the nursing home, which incorporates
the existing topics important in palliative care, as well
as elicits new themes to guides future inquiry.
METHODS
Dimensional analysis
Dimensional analysis is a qualitative method and
approach to theory generation. It is rooted in grounded
theory, a qualitative methodology useful in articulat-
ing theoretical explanations of social and behavioral
phenomena. Dimensional analysis was developed by
Schatzman
18
to structure the analytic process of
grounded theory. In contrast to grounded theory, which
carries no theoretical assumptions, dimensional anal-
ysis assumes concepts are socially constructed, con-
textually situated, and defined from an implicit per-
spective.
19
Dimensionality includes parts, attributes,
interconnections, context, process, and implications,
thus providing an understanding of the whole phe-
nomenon.
20
Dimensional analysis has been used to in-
vestigate varied human phenomena, such as the expe-
rience of neutropenia
21
and perspectives of female
nurse administrators in Japan.
22
Constant comparison and dimensionalizing are two
techniques used in dimensional analysis to maintain
theoretical sensitivity and ensure that all aspects of di-
mensionality are realized. Constant comparative tech-
nique involves taking a particular open code and
recording what is known about it from literature and
the investigator’s experience. Once this is completed,
the open code is subjected to questioning that reveals
possible interpretive bias. Constant comparison by-
passes conventional thinking to explore less conven-
tional interpretation.
23
Dimensionalization similarly reduces the density of
a particular open code. The technique involves ex-
QUALITY OF DEATH
1117
tracting characteristics or attributes of a code and de-
termining their possible variation or extent. With this
method, closely related ideas are analyzed to capture
precise meaning and attributes of each code. Dimen-
sionalization also reduces language bias in descrip-
tion.
18
Literature sampling
Dimensional analysis can use a wide variety of data,
depending upon the nature of the phenomenon under
study. Data may include field notes, interviews, focus
groups, and published literature. This dimensional
analysis relied on published literature to examine the
various aspects of palliative care in the nursing home.
Theoretical sampling was used to obtain literature
containing relevant data.
23
Articles addressing pallia-
tive care in the nursing home were selected for inclu-
sion in the sample under a set of theoretical criteria.
An initial literature search was conducted using the
MEDLINE, CINHAL, PSYCHinfo, and ISI databases.
Search terms used were “palliative care and nursing
home,” “palliative care and long-term care,” “end-of-
life care and nursing home,” and “end-of-life care and
long-term care.” No date limit was imposed on the lit-
erature search so that the date limits inherent in each
search engine could be used. Hospice was not used as
a search term. Furthermore, articles without a specific
focus on the nursing home setting were also elimi-
nated. As appropriate articles were identified, they
were also manually reviewed for additional relevant
citations. The search continued until saturation was
achieved and no articles containing new information
were discovered.
Forty-six multidisciplinary, international, English-
language journal articles ultimately comprised the
database. Articles represented work from the disci-
plines of nursing, medicine, psychology, social work,
public health, and law. International representation in-
cluded three articles authored by investigators from
The Netherlands, four from England, one from Swe-
den, and two from Canada.
Data analysis
Dimensional analysis relies on a three-part coding
scheme. Data analysis began with open coding, a pro-
cess in which key words and phrases were extracted
from each article in the literature sample.
23
This was
done manually by the researcher during careful read-
ing of each article. The process was done twice for
each article on different days to ensure a comprehen-
sive list of extractions. Key words and phrases were
recorded in a list by author’s name, each list on a sep-
arate piece of paper. In total, 1222 open codes were
extracted from the literature sample. Axial coding fol-
lowed, which rearranged or condensed open codes into
conceptually related groups.
23
Once open codes were
condensed, the resulting lists were reviewed for re-
dundancy and refined into small groups of related open
codes representing a single concept or axial code. Fi-
nally, theoretical coding was performed. Theoretical
coding links axial codes via theoretical relationships
into a unified conceptualization of the phenomenon
under study.
23
Axial codes were grouped by concep-
tual scope and content. Groups of theoretically related
axial codes were labeled in a manner such that the la-
bel was most theoretically representative of the codes
in the group. These theoretical codes were then fur-
ther arranged by scope and content into the explana-
tory matrix, representing interrelationships with one
another. Based on conceptual content, the dimensional
analysis matrix was named Quality of Death (Fig. 1).
Through application of dimensional analysis and de-
velopment of an explanatory matrix, Schatzman’s fun-
damental question, “What ‘all’ is involved here?,”
20
is
answered.
Schatzman
20
proposed the explanatory matrix as a
mechanism to structure the analytic and interpretative
process of grounded theory. The explanatory matrix de-
tails dimensions of a phenomenon, in this case pallia-
tive care in the nursing home, and acts as a vehicle to
move analysis from the level of description to one of
explanation. The analytic matrix incorporates five cat-
egories: perspective, context, conditions, processes, and
consequences. Perspective serves as the vantage point
from which analysis occurs.
20
Context bounds the in-
quiry and describes the environment in which the phe-
nomenon exists.
18
Conditions are those dimensions that
facilitate or block processes of the phenomenon of in-
terest. Conditions are affected by context and act as pre-
cursors to process.
18
Finally, consequences are the man-
ifestations of the interactions that exist as a result of the
perspective, context, conditions, and processes.
TROTTA
1118
FIG. 1. Dimensional analysis matrix.
Table 1 provides a summary of the five dimensional
matrix categories, as well as the associated theoretical
and axial codes that were generated from this analy-
sis. Whereas Figure 1 is a conceptual schematic of the
matrix categories and associated theoretical codes,
Table 1 provides similar information in direct chart
form, with the addition of the axial codes, which are
referred to throughout the text and do not appear in
the matrix. The purpose of the figure is to portray the
relationship between the theoretical codes identified in
this analysis as they are situated within the five cate-
gories of Schatzman’s dimensional analysis. Both
Table 1 and Figure 1 will be referred to throughout the
paper to clarify and expand upon references to theo-
retical and axial codes.
Data management and rigor
An audit trail consisting of data, code lists, and
memos, or records of analytic decisions and actions,
was used to maintain analytic rigor. Memos were cat-
egorized by content: observations, methodological in-
sights, and theoretical assertions.
23
Original articles
comprising the sample were printed for ease in cod-
ing and bound for reference. Most materials were
stored electronically in Microsoft WORD
®
(Microsoft,
Seattle, WA) with back-up hard copies. These and
copies of hand-written notes were all chronologically
integrated into a bound notebook.
FINDINGS
Explanatory matrix
Quality of Death is the explanatory matrix for pal-
liative care in the nursing home generated by this di-
mensional analysis (Fig. 1). Quality of Death depicts
a complex social phenomenon situated within an over-
arching perspective of communication. Several con-
textual elements are both barriers and facilitators to
palliative care, and have a direct impact on conditions,
processes, and consequences, as shown in Figure 1. As
shown in the matrix, the ultimate consequence of pal-
liative care in the nursing home is quality of death.
The perspective, context, conditions, processes, and
consequences are described sequentially and in detail,
and demonstrate often subtle yet critical dimensions
of palliative care in the nursing home.
Perspective
Communication pervaded the literature reviewed,
both implicitly and explicitly. Although all dimensions
were given theoretical consideration for the crucial po-
sition of perspective, only communication fulfilled the
necessary criteria of openness, inclusiveness, and pres-
ence in every other dimension. The axial codes listed
in Table 1 that comprised communication demonstrate
familiar actions to all stakeholders who deliver pallia-
tive care in the nursing home.
Context
Four dominant dimensions created context for pal-
liative care. These dimensions are policy and govern-
ment regulations, nursing home factors, role and
staffing issues, and knowledge and education. Policy
and government regulations encompass the broad
overarching issues of laws, data collection, policy, re-
imbursement, and regulations. Nursing home factors,
on the other hand, represent local issues and encom-
pass unique set of axial codes (Table 1). Knowledge
and education was derived from axial codes such as
expertise, training, education, knowledge, and pallia-
tive care curriculum. Role and staffing issues further
compound issues around knowledge and education,
and are represented by axial codes such as staff short-
age, staff turnover, interdisciplinary team, role com-
plexity, and staff support.
Standards for data collection and reporting are reg-
ulated by governmental agencies and include such in-
struments as the Minimum Data Set (MDS) and Res-
ident Assessment Instrument (RAI).
24
Reimbursement
for services rendered in the nursing home is directly
related to the data reported on these instruments, thus
creating a local environment that favors rehabilitation
and restoration rather than palliative care.
15,25
The dimensions knowledge and education and role
and staffing issues delimited delivery of palliative care
in the nursing home. Knowledge, competence, and ex-
pertise must be present to deliver such care in nursing
homes. Lack of education among staff, as well as res-
idents and families, were frequently cited barriers to
palliative care.
26–33
Deficiencies in palliative care cur-
ricula were discussed as further limiting practice and
skill development.
15,29,33–35
However, even when staff
have necessary education for palliative care, staff
shortages, staff turnover, and lack of staff support were
cited as barriers to implementation.
15,34,36–38
Conditions
Within the perspective of communication, and the
context of policy and government regulations, nursing
home factors, knowledge and education, and role and
staffing issues, the conditions of Quality of Death can
be articulated. These conditions are humanism, ad-
QUALITY OF DEATH
1119
T
ABLE
1. C
OMPONENTS OF THE
E
XPLANATORY
M
ATRIX IN
D
IMENSIONAL
A
NALYSIS
18,20
Coding levels
Matrix component Theoretical codes Axial codes
Perspective: A single dimension that emerges Communication Communication
as the vantage point from which to Collaboration
examine the concept. Discussions
Relationships
Documentation
Coordination
Information sharing
Cooperation
Context: Dimensions that set the theoretical Policy and government regulations Data collection
boundaries for inquiry and represent the Policy
environment in which the phenomenon Reimbursement
under study takes place. Laws
Regulations
Nursing home factors Care delivery
Quality
Environment
Culture
Resources
Policy
Standards of care
Finances
Culture
Ethics
Legal issues
Knowledge and education Knowledge
Education
Training
Practice development
P.C. curriculum
Competnece
Expertise
Skills
Information
Role and staffing issues Staff shortage
Staff turnover
Role complexity
Interdisciplanary team
People
Staff support
Time
Conditions: Dimensions that are necessary Humanism Approach to care of
for the processes to take place and the dying
either facilitate or block the processes. Values and beliefs
Attitude
Philosophy
Advance care planning Hospitalization
Preferences
Wishes
Family involvement
Advance directives
Planning
Choice
Decisions
Coordination
Family involvement
Trajectory and prognosis Trajectory
Expectations
Transition
Prognosis
Terminal
Disease process
Dying process
Futility
vance care planning, and trajectory and prognosis. Ad-
vance care planning and trajectory and prognosis stem
from the condition of humanism, a necessary precur-
sor to advance care planning and trajectory and prog-
nosis, which are communicated with the intention of
creating a quality death (Fig. 1).
Humanism was embodied by a set of abstract but
intensely palpable open codes. These codes were not
the main topics of the literature reviewed, but rather
existed on the periphery of other issues. However,
they collectively emerged as a necessary foundation
for the overall existence of palliative care in the nurs-
ing home. Open codes such as “compassion-
ate,”
39(p539)
“care provider attitudes,”
32(p24)
“con-
cordance of values,
40(p40)
and “humane care”
41(p21)
were grouped into the axial codes listed in Table 1.
Humanism, therefore, represented inherent personal
attributes necessary for advance care planning and
determination of trajectory and prognosis.
Although planning future care is a central activ-
ity in the nursing home, advance directives were
minimally represented as a small subset of advance
care planning. Difficulty creating, maintaining, and
executing advance directives were frequently men-
tioned but incompletely described.
28,42-44
Advance
directives may be uncomplicated in concrete terms,
but the actual process of advance care planning de-
mands consideration of more nebulous notions such
as choice, wishes, preferences, and family involve-
ment.
QUALITY OF DEATH
1121
Processes: The actions of the phenomenon Pain and symptom management Individualized care
under study. Pain
Dyspnea
Comfort
Symptom management
Hygiene
Interventions
Psychosocial and emotional Grief and bereavement
issues Fear and anxiety
Guilt and burden
Emotions
Psychosocial issues
Support
Religion and spirituality
Stress
Care Opportunity for palliation
Philosophy of palliation
Holism
Palliative care
Hospice
End-of-life care
Terminal care
Comfort care
Consequences: Dimensions that evolve as Personhood and identity Loss of personhood
a result of the conditions and processes Identity
and represent the outcomes of the Autonomy
phenomenon. Being valued
Dignity and respect
Isolated
Privacy
Dependency
Quality of death Quality of life
Quality of death
Experience of dying
Acknowledgement
Care for the dying
End-of-life experience
Preparing for death
T
ABLE
1. C
OMPONENTS OF THE
E
XPLANATORY
M
ATRIX IN
D
IMENSIONAL
A
NALYSIS
18,20
(C
ONT
’
D
)
Coding levels
Matrix component Theoretical codes Axial codes
Determination of life trajectory and prognosis was
a clinically and ethically complex issue in much of the
literature. Multiple chronic illnesses typical of nursing
home residents generally led to uncertain or unpre-
dictable trajectories. The axial codes that comprised
trajectory and prognosis collectively communicated
the dynamic fluidity of this dimension (Table 1). Tran-
sition was commonly mentioned but not clearly artic-
ulated in the literature, as seen in “shift in empha-
sis,”
45(p856)
“dying recognized as an undeniable part
of living,”
46(pS41)
and “peaceful acceptance.”
47(p119)
Transition was also negatively portrayed, as in “nurs-
ing home as a warehouse for those who are declining
into death.”
46(pS41)
Transition critically represents recognition that a
resident is actively dying. Whereas trajectory and
prognosis are futuristic connotations, transition epito-
mizes the resident’s present state. Furthermore, tran-
sitions are closely tied to expectations. At the time of
a transition, expectations regarding trajectory and
prognosis must be confronted.
Processes
Pain and symptom management, psychosocial and
emotional issues, and care were processes of palliative
care in the nursing home (Fig. 1). Pain and symptom
management were palliative care actions composed of
a conglomerate of elements listed in Table 1. Pain and
dyspnea were the most frequent symptoms mentioned
in the literature. Their frequent mention corresponded
to descriptions of distress for residents, families, and
care providers. When pain and dyspnea are well man-
aged, it appears that palliative care is considered
largely successful.
Subsequently, comfort represented the intended out-
come of pain and symptom management. Achieving
comfort may be conceptually linked to individualized
care, yet this relationship was not fully developed in
the literature. Theoretically, an individualized ap-
proach to care would increase the likelihood of achiev-
ing comfort.
24,43,47
Psychosocial and emotional issues encompassed a
myriad of axial codes (Table 1). Although some ex-
tracted open codes described specific psychosocial and
emotional issues, these issues were most frequently
described in very general ways. Open codes such as
“bereavement care,”
48(p234)
“emotional needs,”
17p(221)
and “psychosocial care”
14(p276)
demonstrate the non-
specific manner in which psychosocial and emotional
issues are described. The lack of specificity in dis-
cussing psychosocial care obviates the targeted inter-
ventions required for individualized care.
14,49,50
Care was the manifestation of all that is enacted un-
der the umbrella of palliative care in the nursing home.
Care was confounded by two significant themes: am-
biguity of terms and opportunity for palliation.
Whereas ambiguity of terms represents a grouping of
axial codes, opportunity for palliation is an individual
axial code. Actual and potential care delivery were rep-
resented by precarious terms. The terms palliative care,
end-of-life care, terminal care, and comfort care were
often used interchangeably by the same author to de-
scribe a consonant method and philosophy of care de-
livery. For example, Raudonis and colleagues
27(p297)
state their study “explored the level of palliative care
knowledge among licensed nurses delivering end-of-
life care,” Similarly, Cassarett and colleagues state
“there are many opportunities to improve end-of-life
care,”
51(p1493)
but also that their study “describes the
needs for palliative care.”
51(p1496)
Consequently, the
ambiguity of terms with respect to palliative care in
the nursing home fosters potential opportunity for pal-
liation rather than actual palliation.
The opportunity for palliation represented the cul-
mination of care. It appeared in retrospect and con-
noted a missed opportunity rather than a potential op-
portunity. For example, the continuum of palliative
care
24
was counterbalanced by delayed palliation
34
and referrals frequently made too late or not at all.
34,38
Such implicit recognition about missed opportunities
for palliative care are not surprising given barriers as-
sociated with communication, staffing, advance care
planning, and pain management.
15,38,50
Whether or not
a nursing home resident fully realizes the opportunity
for palliation likely dictates whether or not he or she
experiences quality of death.
Consequences
Personhood and identity and quality of death were
consequences of palliative care in the nursing home. To-
gether, they emerged directly from opportunity for pal-
liation. The axial codes comprising personhood and
identity (Table 1) represented fundamental human issues
critical to palliative care, especially as death approaches.
Furthermore, a strong polarity was represented by the
particular codes loss of personhood and identity. Loss of
personhood was the negative outcome often cited by au-
thors, and maintenance of identity was the positive out-
come of palliative care in the nursing home (Fig. 1).
The dying nursing home resident was described in
one of three ways: person, resident, and patient. The
label selected seemed dependent on prognosis, thereby
subtly implying loss of personhood as the resident ap-
proaches death.
26,39,42,52
As a nursing home resident
TROTTA
1122
nears death his or her status as a person or resident
with associated identity, autonomy, privacy, respect,
and dignity, appears to shift to that of a patient, with
associated features of being isolated, devalued, and de-
pendent. Theoretically, the analysis suggests that when
life remains the focus of care, the resident is not ac-
knowledged as a dying person, thereby losing person-
hood. Identity is maintained, however, when the resi-
dent is recognized as dying, and in tandem, the desired
outcome is quality of death.
Throughout the literature, language of quality of life
was very visible. Language such as “quality of re-
maining life”
31(p120)
and “quality of life at the end of
life,”
53(p334)
however, suggest awkwardness in over-
laying quality of life on the consequences of dying.
Perhaps there is disutility in trying to situate palliative
care in the nursing home within the familiar frame of
quality of life. Discussion of dying trajectory, referred
to as the “dying process,”
28(p148)
underscores this awk-
wardness and suggests further exploration of the pre-
viously unacknowledged quality of death.
When quality of life is used to measure outcomes
of palliative care, this scenario could be described as
a life-to-dying trajectory followed by a short dying-to-
death trajectory. A theoretical fracture represents the
point at which a nursing home resident is considered
to be dying. This determination, however, is impossi-
ble. A single smooth life-to-death trajectory in which
the transition to dying in advance of death is imper-
ceptible may be more appropriate than the current rep-
resentations. Furthermore, applying quality of death to
describe the goal of palliative care in the nursing home
is congruent with a single trajectory, where death is
expected and not disconnected from life. Quality of
death assumes explicit acknowledgement of death and
hence ample opportunity for palliation with mainte-
nance of the resident’s identity throughout the process.
DISCUSSION
Quality of death focuses on the transitional experi-
ence of dying and the maintenance of identity through
death. This research elucidates two fundamental con-
cepts that can serve as theoretical bases for future pal-
liative care outcomes research in the nursing home set-
ting and beyond. The first is the understanding that
dying cannot be identified as a singular point in time.
When this type of identification is attempted, the op-
portunity for palliation is often missed. The second is
that as death approaches, the resident’s identity must
be maintained. The maintenance of identity ensures
quality of death, while the alternative does not. The
following discussion elaborates on these, as well as
other important findings, and their potential roles in
future outcomes research.
In her dialogue of the prospective measurement of
outcomes at end of life, Steinhauser
54
states that the
fundamental question is, “What time period constitutes
the end of life?” She recommends a broader concep-
tualization of the life to death trajectory, which paral-
lels the current analysis. Relaxation of the time period
that constitutes dying would allow for a more thor-
ough evaluation of patients’ and families’ perceptions
of the dying experience.
54
This would provide the op-
portunity to evaluate the quality of proxy reporting,
which becomes critical as death approaches, and is an
important aspect of measurement in outcomes re-
search. It would also provide insight into how best to
measure quality of death, the primary outcome of in-
terest.
Johnson
46
asserts that if clinicians try to identify an
exact time at which a resident is dying, then residents
and their families are not receiving optimal palliative
care. This position is congruent with the opportunity
for palliation, an opportunity that is often missed. It
highlights the fracture in the trajectory toward death
created by forcing the dying to death trajectory into a
focus on quality of life. Curtis and colleagues’
55
work
on missed opportunities to discuss palliative care op-
tions for patients in intensive care further support this
important finding. Future research could focus on
methods for proactive determination of prognosis and
study subsequent illness trajectories for nursing home
residents with end-stage chronic illness from varied
perspectives. An exploration of the barriers inherent
in the determination of trajectory and prognosis would
also be useful in isolating outcome measures that iden-
tify trajectories congruent with resident and family ex-
pectations and avoid forced acceptance of dying and
death.
This analysis suggests that quality of death in the
nursing home is difficult to achieve without the main-
tenance of personhood and identity for the dying nurs-
ing home resident. Existing literature on the mainte-
nance of dignity supports this finding for both nursing
home residents
52
and those receiving care in a wide
range of settings.
56
Chochinov
56
states that helping dy-
ing patients in any setting do so with dignity is the ba-
sic tenet of palliative care. He asserts that recognizing
the subtle qualities that embody each person, through
the time of death, is fundamental to the preservation
of dignity, and thus the delivery of palliative care.
Chochinov
56
concludes that the conservation of dig-
nity should be a standard of care for all dying patients.
In the present analysis, dignity was certainly a com-
QUALITY OF DEATH
1123
ponent of the maintenance of personhood and identity.
Therefore, it is possible that dignity could serves as a
potential proxy for the maintenance of identity in mea-
suring quality of death as an outcome of palliative care.
Several researchers highlight the importance of the
timing of palliative care, which converges with the op-
portunity for palliation in this analysis.
5,13
Research
aimed at identifying indicators for the opportunity for
palliation, including retrospective studies examining
missed opportunities, would help to proactively eluci-
date appropriate timing of palliative care for nursing
home residents. Elucidating indicators for the oppor-
tunity for palliation for nursing home residents would
subsequently enhance the potential for maintenance of
identity and quality of death.
Communication was an important domain in Fer-
rell’s
13
work, which is congruent with the overarching
perspective of this analysis. This analysis corroborates
the shift called for by Ferrell
13
and others
30
to redirect
current dialogue from a focus on life with inherent bar-
riers that arise in mismatched plans and expectations,
toward communication and care that achieves quality
of death. Research that describes, explains, and im-
proves communication around palliative care in the
context of the nursing home is requisite for improve-
ment in palliative care in the nursing home and be-
yond.
There are several limitations inherent in this proj-
ect, and in the research itself. Although the literature
was searched until data saturation occurred, it is pos-
sible that key articles could have been missed. Also,
because this work is based on theoretical analysis, it
is subject to researcher interpretation at each level of
coding. Similar work performed by another researcher
could yield different conclusions.
CONCLUSION
The present dimensional analysis of palliative care
in the nursing home reveals a complex, contextual, and
relatively unexplored phenomenon. The dimensional
matrix that emerged from the analysis demonstrates,
to paraphrase Schatzman,
20
“all that is involved” in
palliative care in the nursing home setting. The per-
spective of communication overarches the matrix and
shapes the subsequent components within it. Person-
hood and identity and quality of death are the conse-
quences of palliative care in the nursing home. Main-
tenance of personhood and identity with the goal of
quality of death, the critical assertion of this analysis,
was not explicitly argued in the literature. Rather, these
aims were drawn through analysis from statements in
the literature that likely reflect societal values about
death in the nursing home but not actual care provided.
The present analysis surfaces important imbedded
assumptions about palliative care in the nursing home
and makes overt and structured what are largely covert
beliefs about this care. It identifies key themes critical
to palliative care delivery in the nursing home, as well
as their complex interrelationships. Most importantly,
it articulates themes that are not well explored in the
current literature, and demonstrates their importance
in advancing the study of palliative care in the nurs-
ing home and other settings. Finally, the dimensional
analysis matrix provides a framework from which to
explore these emergent themes.
ACKNOWLEDGMENT
This work was supported by the John A. Hartford
Foundation’s Building Academic Geriatric Nursing
Capacity Award Program. Special thanks to Sarah H.
Kagan.
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Address reprint requests to:
Rebecca L. Trotta, M.S.N.
Hartford Center of Geriatric Nursing Excellence
University of Pennsylvania School of Nursing
418 Curie Boulevard
Philadelphia, PA 19104-6096
E-mail: rtrotta@nursing.upenn.edu
QUALITY OF DEATH
1127
