Journal of Human Behavior in the Social Environment, 24:281–295, 2014

Copyright © Taylor & Francis Group, LLC

ISSN: 1091-1359 print/1540-3556 online
DOI: 10.1080/10911359.2013.820159

Hospice and Self-Assessed Quality of Life in the Dying:

A Review

Stephanie Grace Prost

College of Social Work, Florida State University, Tallahassee, Florida, USA

This review summarizes the impact of hospice and palliative end-of-life care on the self-assessed
quality of life (QoL) in terminally ill persons. Articles were included if researchers utilized at least
two observations post–hospice admission and were published in English between January of 2000 and
December 2012. Findings from included studies synthesize results of a variety of terminal patients
(n D 1,017) across settings. Only one study utilized a non-treatment control group. The remaining
studies compared variations of program inclusions, settings, or QoL scores across carcinoma site. The
studies included indicated mixed outcomes related to the effect of hospice on QoL in the dying.

Keywords: Hospice, outcomes, palliative care, quality of life, social work

The National Hospice and Palliative Care Organization (NHPCO) indicated that approximately
44% of all Americans who died in 2011 were being served by hospice programs (NHPCO, 2012).
Despite this large percentage, over 85% of persons receiving hospice care typically die somewhere
other than their “home” (Rummans, Bostwick, & Clark, 2000). Hospice care is considered a type of
palliative care, though these terms are often used interchangeably. As such, debate often surrounds
definitions and applications of hospice and palliative care both in practice and research. Meier
(2006) indicates that palliative care focuses on medical intervention providing pain relief and
symptom management aimed at providing the highest quality of life (QoL) for patients facing
terminal illness. Palliative care was born from the tradition of hospice but now includes service
provision throughout the life-course (Quill & Abernethy, 2013). Hospice care, in contrast, often
requires physician referral alongside a terminal prognosis as financial reimbursement for services
is often provided (Periyakoil, 2010).
This review will focus on both hospice and palliative end-of-life care. These services will
be defined as inclusive, interdisciplinary practices of non-curative, compassionate care aimed at
increasing the quality of life for the terminally ill. Prince-Paul (2009) notes the goal of palliative
care at the end of life is neither to hasten death nor prolong life. This care may focus on pain
management, medical intervention, or a wide range of psychosocial or emotional support services.
Hospice and palliative end-of-life care is provided by a team consisting of a wide range of
professionals and volunteers and often includes physicians, nurses, home health aides, social
workers, chaplains, and professional physical and occupational therapists. This multidisciplinary
team provides a holistic approach to client-centered care. Hospice and palliative end-of-life care
can be provided in any number of locations but is most often provided where the patient calls

Address correspondence to Stephanie Grace Prost, College of Social Work, Florida State University, 2500 University
Center, Building-C, Tallahassee, FL 32306, USA. E-mail: sgm03c@my.fsu.edu

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“home” (i.e., private residence, assisted living facility, nursing home, and hospitals). Hospice care
often includes provisions for family members and loved ones of the terminally ill patient such as
grief and bereavement services.
Hospice agencies have evolved into primarily free-standing or independent facilities (57%)
compared to the 20% contained within formal hospitals. Hospice agencies typically admit between
151 and 500 patients annually (34%) and hold a daily patient census of over 100 patients (37%;
NHPCO, 2012). American consumers have access to various outcome measures and recent national
results used to assess quality of care on the NHPCO website. These measures include the Patient
Outcomes and Measures, the Family Evaluation of Bereavement Services, the Family Evaluation
of Hospice Care, and the Survey of Team Attitudes and Relationships (NHPCO, 2012).

INTERNATIONAL PERSPECTIVES

The general “graying” of the American and worldwide populations will likely cause an increase
in end-of-life care options, including hospice and palliative end-of-life care programs across the
globe. Despite varying international definitions of end-of-life programs, these services focus on
the patient’s QoL. Variation also exists related to programmatic inclusions and settings of service
provision throughout the world. Some areas of the world provide formal services utilizing teams of
professionals in hospitals whereas other locations utilize primarily volunteers to offer compassion
and comfort during terminal illness (Candy, Holman, Leurent, Davis, & Jones, 2011).

Patient Characteristics
Most patients admitted to hospice care in the United States have an average length of stay of less
than 7 days (NHPCO, 2012). This concurs with Prince-Paul’s (2009) indication that most patients
referred to hospice die within several days of referral. This untimely referral is most closely linked
with the many misconceptions surrounding the notion of hospice care, including hastened deaths
(Prince-Paul, 2009). These fears often impede family and physician decision making. Freund et al.
(2012) further indicate that terminally ill persons within inpatient or acute settings often do not
discuss end-of-life care with their health care providers (Freund et al.). A retrospective study of
deceased patients’ medical charts noted that patients, health care providers, and family members
often used terminal admission referrals rather than long-term use of hospice programs. Hospice
care provided prior to terminal admission could potentially increase quality of life in the dying
(Freund et al.). A recent systematic review also notes that the use of hospice care at home can
greatly reduce the use of medical intervention while also improving patients’ and families overall
satisfaction with care (Candy et al., 2011).
Patients receiving hospice and palliative end-of-life care in the United States were more often
female (56%) and relatively older, with 39% being 85 years of age or older. Nearly 83% of
Americans who received hospice care in 2011 were Caucasian. Further, most patients (62%) are
admitted with diagnoses other than cancer, with conditions such as debility unspecified or failure
to thrive, dementia, and heart and lung diseases (NHPCO, 2012). Few outcome studies have
been completed with this population due the variety of limitations associated with conducting
research with the dying. The high rates of attrition, recruiting and retention concerns, and ethical
considerations related to study design limit the opportunities to conduct controlled studies with
such a vulnerable population (Hill, 2002).
Federal regulation stipulates that hospice patients have a variety of rights (National Association
for Home Care [NAHC], 2011). These include the right to receive the highest quality of care
available and to form relationships with a foundation built upon respect, dignity, and honesty.
 HOSPICE AND QUALITY OF LIFE 283

Admittance to hospice care also requires that services provided will maintain or increase the
patient’s quality of life.
Several significant developments occurred in the 1980s and 1990s related to the provision
of hospice care. The Government Accounting Office released a study indicating that just over
one-third of hospices were Medicare-certified (NHPCO, 2012). This prompted efforts to develop
systematic requirements and certification procedures for hospice programs. In 1989, Congress
also provided hospices a 20% increase in reimbursement fees since the 1986 rates. Stipulations
were also made to ensure future increases in reimbursement through a provision contained in
the Omnibus Budget Reconciliation Act of 1989 (NHPCO, 2012). It was at this point that local
hospice agencies and on-site palliative end-of-life care units began to increase in number and size.
Several systematic reviews have been conducted since these policies and practices were enacted
that cover the provision of hospice and palliative end-of-life care through the mid-2000s. One
systematic review highlighted the outcomes associated with the use of specialized palliative care
teams for cancer patients and their families (Higginson & Evans, 2010). In addition to quality
of life, other outcomes evaluated included pain, use of hospital services, anxiety, and symptom
management. Their findings indicated that the use of specialist palliative care teams is associated
with generally positive outcomes for both the patients and their families in home, hospital, and
inpatient settings. Two primary limitations of this study include the wide range of outcomes
covered and limited use of standardized outcome measures utilized in the included studies.
An additional recent systematic review focused on patient and family satisfaction with and costs
of hospice care (Candy et al., 2010). Outcomes evaluated in this review centered on effectiveness
(including cost-effectiveness) of hospice care delivered across settings, drawing upon information
from both quantitative and qualitative studies. Results indicated that many benefits exist when using
hospice care for patients and families. The authors do note, however, that many of the quantitative
studies included were of limited design quality. A final note urges continuing research in this field
and the application of more rigorous standards to evaluate outcomes effectively.
Last, a final review illustrated relationships between family satisfaction with care and QoL
with the use of specialized palliative care (Zimmermann, Riechelmann, Krzyzanowska, Rodin,
& Tannock, 2008). Outcomes reviewed included cost-effectiveness, satisfaction with care, and
QoL. Primary findings illustrated that while benefits of palliative end-of-life care were numerous,
these were limited by methodological shortcomings. This conclusion parallels limitations noted
in previous systematic reviews related to hospice and palliative end-of-life care.
Despite the limitations noted in the previous reviews, Hanks et al. (2002) note that generally
speaking, hospice care has improved the standards of care for the dying. What can be said,
however, regarding the application of hospice and palliative end-of-life care and the direct impact
on a patient’s self-assessed QoL?

Quality of Life
A primary tenet of effective hospice and palliative care at the end of life requires that QoL for
the terminally ill patient be maintained or increased. QoL is highly individualized and dynamic
and may encompass a wide range of physical, psychological, emotional, and social factors. These
include health-related and psychosocial functioning, pain management, and spirituality. Outcome
measures assessing QoL must strive to balance the wide-ranging needs of a patient (Hill, 2002).
The use of accurate QoL scores may even assist hospice and palliative end-of-life care nurses in
providing individualized care for terminally ill patients (Hill, 2002). Use of these specialized care
plans may further increase the patients’ QoL.
Hack (2012) notes, however, that interventions aimed at ameliorating psychosocial distress in
patients receiving palliative end-of-life care will still face many challenges. His questions include
whether or not an appropriate outcome measure exists or whether benefits from the interventions
284 S. G. PROST

are tangible. Researchers will also be faced with difficulties when determining the societal value
of incremental improvements in the outcome measure selected to assess QoL (Hack, 2012).
Further, concerns will likely be present related to evaluation of QoL itself. Both clinicians and
researchers must design and utilize assessment methods in a way that balances the burden of
questions, the multi-faceted conceptual nature of QoL, and considerations related to questionnaire
administration such as length of time needed to complete the measure or adequate font size (Cohen
& Mount, 1992). Questionnaires ought to remain both brief and comprehensive while assuring
ease of use for the participant (Jocham, Dassen, Widdershoven, Middel, & Halfens, 2009).
Many authors (Cohen, Boston, Mount, & Porterfield, 2001; Hill, 2002; McMillian, 1996; Yeung,
French, & Leung, 1999) have also noted the most accurate measure of QoL should be self-
assessed in order to fully capture the multi-faceted nature of an individual’s QoL. Concerns
arise regarding the use of family or proxy assessment of QoL rather than self-assessment. When
reviewing the literature, many studies employed the use of proxy assessments of QoL rather than
self-assessments. Others evaluated similarities between self-assessments and those completed by
family members or the clinical team during care or after the patient had died (Hill, 2002; Jones
et al., 2011; Kutner, Bryant, Beaty, & Fairclough, 2006; McMillian & Mahon, 1994; Zloklikovits
et al., 2005). The results of these studies were mixed. Therefore, debate continues regarding
the accuracy of proxy assessments. Further research need be conducted to determine if outcome
measures completed by physicians and family members can accurately assess QoL in the terminally
ill. For the purposes of this review, only outcome measures that are self-reported will be examined
so as to glean the most accurate information possible.
This review aims to establish a definitive answer to the research question, “How does hospice
impact the self-assessed quality of life in the dying?” Though many outcomes are often used to
assess hospice and palliative end-of-life care, the present review focuses exclusively on empirical
self-assessed QoL measures rather than satisfaction with care, cost-effectiveness, or pain and
symptom management. It is hypothesized that hospice and palliative end-of-life care will positively
impact self-assessed QoL scores for terminally ill patients when compared to similar patients who
do not receive these specialized services.

METHODS

A series of electronic and hand searches were performed. One electronic search was conducted
through the ProQuest online bibliographic database and included MEDLINE, ProQuest Disser-
tations & Theses Full Text, PsycINFO, Social Service Abstracts, and Sociological Abstracts.
Search terms included: “the dying” OR “terminally ill,” AND hospice OR palliative, AND
outcome* OR quality-of-life. Variations of terms were utilized to meet the search constraints
of the electronic databases (i.e., quality-of-life, quality of life, QOL, QoL). A second electronic
search was conducted using the same search string in ISI Web of Science. This study cannot
be considered a true systematic review as no search was conducted for unpublished studies
or other gray literature. Multiple inclusion and exclusion criteria were applied to the search
results. Inclusion criteria for the retrieved articles were (1) types of studies: quasi-experimental
and experimental designs including randomized controlled trials contained within peer reviewed
articles; (2) types of participants: persons diagnosed as terminally ill or having been referred to
hospice or palliative end-of-life care with life expectancy of at least 5 days; patients must have
been over the age of 18 during hospice or palliative end-of-life care service provision; (3) setting
of interventions: in-home, long-term care facilities, inpatient hospice facilities, and acute hospitals;
and (4) at least one empirical self-assessed QoL outcome measure administered at two separate
points in time after admission to the hospice or palliative end-of-life care service. Exclusion criteria
were few. Purely qualitative studies were excluded due to the extreme heterogeneity of methods
 HOSPICE AND QUALITY OF LIFE 285

applied. Hospice care interventions for pediatric and adolescent patients (younger than age 18)
were also excluded. Studies published in languages other than English were excluded as well.

RESULTS

Study Characteristics
The author completed each of the online searches and conducted the title, abstract, and article
reviews solo. Since dual raters were not used, inter-rater reliability was not calculated. The two
electronic searches yielded a total of 1,017 peer-reviewed articles within the six primary engines.
Initial results of the searches were screened to determine whether a study might be appropriate
for the review based on the report’s title. After title review, 843 articles were excluded, and the
remaining 174 abstracts were reviewed in detail. Preliminary abstract review of these articles
yielded 21 studies that included the use of hospice or palliative end-of-life care as an intervention
with an empirical, self-assessed QoL measure as a primary outcome. These were then further
reduced to 15 articles after excluding duplicates, outcome evaluations, or studies that only assessed
QoL at one point in time after patient admission. Only four studies remained after reviewing the
articles in depth. Two additional studies were located through reference harvesting of earlier
systematic reviews and included articles. A total of six articles were included in this review. See
Figure 1 for search results and the application of inclusion and exclusion criteria. Summaries of the
research findings including population, intervention, comparison, and control group descriptions,
and outcomes are arranged chronologically with the oldest study discussed first. Summaries also
included study design, group distribution, and strengths and limitations.
The studies reviewed include Cohen et al. (2001); Jordhøy, Fayers, Loge, Ahlner-Elmqvist,
and Kaasa (2001); Hanks et al. (2002); Hill (2002); Jocham et al. (2009); and Jasińska, Tracz,
Kurzewska, and Orszulak-Michalak (2010). An overview of the six articles is shown in Table 1.
Two studies included in the review utilized experimental designs (Hanks et al., 2002; Jordhøy
et al., 2001) employing random assignment to conditions whereas the four remaining studies
(Cohen et al., 2001; Hill, 2002; Jasińska et al., 2010; Jocham et al., 2009) did not use random
assignment. A variety of instruments were used to measure QoL in the included studies. Four
of the studies (Hanks et al., 2002; Jasińska et al., 2010; Jocham et al., 2009; Jordhøy et al.,
2001) used the European Organization for Research and Treatment of Cancer Quality-of-life-
C30 (EORTC QLQ-C30) or a variation thereof to assess QoL. The remaining studies used either
the Missoula-VITAS QOL Index (MVQOL; Hill, 2002) or the McGill Quality-of-life Question-
naire (MQOL; Cohen et al., 2001). Data were extracted from the articles and compiled into a
form for ease of comparison. These results were later revised to ensure accuracy and input into
Table 1.

Study Findings
Cohen et al. (2001)
One study aimed to document the self-rated changes in QoL for patients newly admitted to
inpatient palliative care units across Canada. Cohen et al. (2001) acknowledges previous studies’
limitations incurred by assessing QoL for terminally ill patients via physician and proxy reports,
as opposed to patient self-reports. Patients were asked within 2 days of admission to one of five
participating inpatient palliative care units to complete the initial assessment containing the MQOL.
Trained research assistants would be available if the participant was unable to complete the self-
assessment. These assistants were provided with standardized responses in order to reduce bias.
286 S. G. PROST

FIGURE 1 Flow chart of review process.

 TABLE 1
Summary of Study Descriptions

Study Design Sample Setting Outcome Measure Effect

Cohen et al., 2001 OXO n D 88 Inpatient hospice units MQOL QoL increased significantly after admission to the
(5) inpatient hospice unit in each domain measured.
Jordhøy et al., 2001 Cluster ROXO n D 434 Home hospice care EORTC QLQ-C30 Intervention group showed no improvement on
Cluster RO O Intervention D 235 EORTC QLQ-C30 scores when compared to the
Control D 199 control group.
Hanks et al., 2002 ROXO n D 261 Acute hospital EORTC QLQ-C30 In both groups, significant improvements in
ROYO Intervention (full-PCT) bothersome symptoms & QoL. However,
D 175 researchers unable to establish significant
Control differences in QoL scores between groups.
(telephone-PCT) D
86
Hill, 2002 OXO n D 72 Inpatient hospice unit MVQOLI No statistically significant difference in the changes
OO in QoL subscales/overall QoL between groups
from initial to second observation; however, the
intervention group did experience statistically
significant improvements in all QoL domains.
Jocham et al., 2009 OXO n D 121 Acute hospital & home EORTC QLQ-C30 Home hospice patients have improved levels of QoL
OYO Hospital D 64 hospice care domains of health compared to hospital patients.
Home hospice D 57
Jasińska et al., 2010 OXO n D 41 Acute hospital QLQ-C15 PAL Patients indicated maintained or improved global
QoL after admission to hospital palliative care unit
from first day of admission to last day of
hospitalization.

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After the initial assessment was completed, the patients would then complete a second assessment
7 to 8 days later. Patients were then asked to discuss any changes in their QoL since admission to
the palliative care unit with a trained interviewer. These semi-structured interviews were recorded
for later qualitative analysis.
Eligibility requirements included a life expectancy of at least 10 days and the ability to complete
the study assessments without undue patient risk. Researchers also required that patients be fluent
in English or French and retain mental capacity to allow for informed consent. Of the eligible re-
spondents, approximately 70% agreed to participate in the study. These 135 participants completed
the first MQOL. However, 34% of those participants did not complete the second assessment.
Various reasons for lack of follow-up include confusion, weakness, and death. Therefore, only 88
participants completed both measures after enrolling in palliative care program services. Forty-five
of the participants were female (51%), and the mean age was 64 years.
The MQOL has been found to be a valid, reliable measure in previous studies. The authors
provide references though do not indicate statistics for the measure within text. The authors
indicate a significant increase in QoL scores across all patient domains between the first and
second observations. These scores point to the possibility and feasibility of increasing QoL for
the terminally ill despite their nearness to death. Results from the semi-structured interviews also
revealed common themes. Participants were often fearful, lonely, and sad prior to admission to
the palliative care units. After admission, however, participants in this study indicated increased
feelings of happiness, peacefulness, and a sense of comfort.
A primary limitation in this study is the absence of a comparison group of terminally ill patients
residing in other settings. The authors note, however, that it is unlikely that spontaneous changes
in QoL scores would occur during such a brief period of observation that were unrelated to the
palliative care admission, as terminal illness is often progressive in nature. A unique strength of
this study, however, is its potential for generalizability. The participants were recruited from five
different palliative care programs in two distant cities. Authors note that this may increase the
likelihood that these results could apply to larger groups.

Jordhøy et al. (2001)

The primary goal of this study was to assess the impact of palliative care on QoL in the
terminally ill. Two hypotheses were noted: (1) The palliative medicine unit (PMU) would be
able to optimize the health-related QoL for dying patients and enable patients to spend more
time at home; and (2) use of the PMU would lead to increased competency for both inpatient
and community staff, thereby increasing knowledge associated with coordinated care leading to
effective symptom management.
The authors conducted a cluster randomized control trial in Trondheim, Norway in order to test
these hypotheses. Six clusters were defined by community health care districts and were allocated
to treatment as usual (TAU) or the intervention. Patients were assigned to the treatment condition
present in the community health care district where they lived. Participants could reside within
the community or the hospital.
All participants must have been diagnosed with an incurable malignancy with less than 9 months
life expectancy. Participants were asked to voluntarily consent to the study and to complete an
initial questionnaire. The final sample consisted of 434 persons, control .n D 199/ and intervention
.n D 235/. Patients in the intervention group were mostly male (56%), and the median age was
70 years. Patients in the control group were mostly female (51%), and the median age was 69
years.
The intervention—admission to the PMU—consisted of comprehensive, holistic, and multidis-
ciplinary care for both patient and family. These services were provided by the staff from the
University Hospital in Trondheim. The PMU consisted of several additional clinical routines not
 HOSPICE AND QUALITY OF LIFE 289

present in conventional care such as the use of a care coordinator, assistance to community service
and referral, and palliative care training for inpatient and community staff.
The outcome measure utilized to evaluate patients’ QoL was the EORTC QLQ-C30. This
instrument consists of 30 items comprising scales related to physical, emotional, cognitive, and
social distress. Higher scores indicated higher QoL. Results of the study were mixed. Only one
scale found a significant difference between the intervention and control groups; the intervention
group had higher scores related to appetite loss (i.e., their appetite’s had increased since the trial
began). The authors indicated that no other significant differences appeared on any EORTC QLQ-
C30 scales. Both groups did indicate that role functioning was most severely impacted during
terminal illness.
Limitations of this study are numerous; in fact, the authors went so far as to publish an
earlier article related to lessons learned while conducting the trial (see Jordhøy et al., 1999). A
primary weakness relates to the sample distribution across groups. The authors indicate significant
variation was present between the two groups prior to treatment. This was likely related to
enrollment procedures from cluster assignment. The authors note that although patients were
recruited appropriately, late referrals often led to inadequate follow-up. Rates of questionnaire
completion also dropped dramatically as each follow-up observation occurred. The authors note
several strengths. This study had a larger sample than many others in the field, maintained a
comparison group for 4 months, and also utilized cluster randomization. These achievements are
important when considering the many barriers associated with conducting research with persons
at the end of life.

Hanks et al. (2002)

A randomized controlled trial was employed by Hanks and colleagues to determine the effec-
tiveness of a full palliative care team (PCT) intervention when compared to a limited form of the
PCT via telephone (Hanks et al., 2002). The authors note that few trials have been successfully
completed in this area of specialist care and even fewer that demonstrated positive results of PCTs
compared to usual care. Upon entry to the United Bristol Healthcare Trust (UBHT), patients
were referred to the hospital PCT. This specialist group provided services aimed at reducing
symptoms and managing pain. Emotional and psychological support was also available to patients
and families. The PCT interventions were provided in addition to TAU in the UBHT.
The full-PCT intervention group received comprehensive palliative care from a team consisting
of consultants as well as practitioners. The team had access to a clinical psychologist, community-
based hospice and palliative care teams, social workers, chaplains, and a variety of rehabilitation
staff. Patients and their families were offered at least once-weekly consultations with the PCT
atop TAU. The control group received TAU and support from the PCT; however, these patients
and families had no direct contact with the PCT. Only a brief telephone consultation was provided
shortly after admission for patients in this group.
An initial 684 patients were referred to the PCT from the UBHT acute hospital setting. Of
these, 423 patients were excluded based on an inability to give informed consent, patient or family
too distressed to participate in the study, and patient unwillingness to participate in questionnaire
completion. An additional exclusion criterion was whether the patient was deemed likely to be
discharged or to die within 24 hours. The authors indicate the primary reason for exclusion from
the study was related to patient diagnoses of cognitive impairment. Randomization was completed
using a computer random number generator. The study population consisted of 261 patients (full-
PCT n D 175, telephone-PCT n D 86). Baseline characteristics for the two groups revealed
no statistically significant differences except in gender distribution. Within the full-PCT group,
103 patients were male (59%), and the average age was 68.5 years. The telephone-PCT group
contained 39 male patients (45%), and the average age was also 68.5 years.
290 S. G. PROST

QoL was measured using the EORTC QLQ-C30. Additional outcomes measured included
pain and symptom control, length of hospital stay, and overall assessment of care (satisfac-
tion/dissatisfaction). Both treatment conditions were assessed weekly throughout their admission.
A significant improvement in scores across all QoL items was seen for the full-PCT group.
The telephone-PCT group did indicate some improvement on QoL items. The authors indicated
scores were sustained and improved over time for symptom severity, mood, health-related QoL,
and emotional domains for both groups. Further analysis between groups however, indicated no
statistically significant differences were present after treatment.
The authors note an important limitation of this study indicating that though differences were
noted between groups, it is likely that a false-negative occurred. Several indicators support
this concern including the use of an unrepresentative sample, a small sample size, and likely
contamination of the control group. Hanks et al. (2002) indicates that a number of patients were
switched from the telephone-PCT group to the full-PCT group during the study This makes
attempting to draw causal inferences from this study problematic. Overall, however, the authors
note patients received a high level of care throughout their admission to the PCT program at
UBHT.

Hill (2002)
A pretest/posttest quasi-experimental design was utilized by Hill (2002) to determine if nurse
and patient QoL assessments were similar. The author also aimed to discern if using patient QoL
assessments to develop specialized care plans would increase patient QoL while receiving palliative
end-of-life care. Hill (2002) also utilized qualitative methods to supplement the quantitative data
related to patient perceptions of QoL.
Hill (2002) indicates that admission criteria for the hospice facility included a life expectancy
of 1 year or less and patient desire to restrict curative care. Patients were often admitted for
symptom management, pain relief, respite for families, and end-of-life care. Participants were
asked to complete a self-assessed measure, the MVQOLI, within 3 days of admission to an
inpatient hospice facility. Patients then completed the MVQOLI a second time, approximately
7 to 10 days after admission. Random assignment was not feasible as the facility had several
shift changes each day, which would not allow for patients to receive care from only one hospice
team. Therefore, the study groups were run sequentially. The first stage included the intervention
group, and the second stage included the control group. The control group would receive standard
hospice care. The intervention group would use results from the second MVQOLI to aid in case
management and care planning. After this assessment was completed, a random sample of patients
(from both groups) were shown the results of the MVQOLI and asked to assess the accuracy of
the assessment through a qualitative interview. The conversation was tape-recorded and coded for
qualitative analysis.
Results indicated that 302 admissions and 251 deaths had taken place during the 10-month
study. Men and women were represented equally in both groups. More than half (55.5%) of the
patients were admitted to hospice care to manage symptoms. The primary terminal diagnosis was
cancer. Hill (2002) indicates no pre-treatment statistical differences between the groups across
variables. A total of 72 patients were included in the study. Primary results related to MVQOLI
scores indicate that no statistically significant differences were noted between the intervention
and control groups post-treatment. The intervention group, however, did experience an overall
increase in MVQOLI scores across domains. Statistically significant improvements were found
for symptoms, function, and overall QOL for the intervention group.
Several limitations were noted including the study design, concerns related to outcome measure
administration, and a small sample size. Hill (2002) does indicate that the beneficial skill set many
of the nurses experienced during the trial was a primary strength. She notes that nurses became
 HOSPICE AND QUALITY OF LIFE 291

more attuned to patients’ needs and more accurately assessed QoL between the first and second
observation points. This finding illustrates that increasing the clinical skill set of close contact
nursing and support staff may also increase dying patients’ QoL.

Jocham et al. (2009)

An additional study focused on the use of palliative care across two settings: home and an acute
inpatient hospital (Jocham et al., 2009). This longitudinal observation study aimed to determine the
QoL of patients in two settings at two points in time. Two research questions were posed: (1) Do
these patients (home- and hospital-bound) show improvements in health-related functioning once
admitted to palliative end-of-life care programs; and (2) do patients who reside in their homes
experience better health outcomes when compared to their hospital counterparts?
Researchers extracted 121 patients using a stratified random sample from a total of 250 cancer
patients using home care or hospital services. Participants must have been over the age of 18
with no cerebral metastases or psychiatric disorders. Participants must have also been fluent in
the German language and have been sufficiently cognitively intact as to be able to complete
the questionnaire without assistance. The hospital group included 64 patients while the home
care group included 57 patients. Participants in the study were mostly female (57.8%) and with
an average age of 63 years. Patients received comprehensive, palliative end-of-life care in both
settings.
Researchers used the EORTC QLQ-C30 to assess QoL in their participants. Patients in the
hospital group demonstrated a statistically significant decrease in nausea/vomiting, pain, and dys-
pnea (shortness of breath). The home care group experienced statistically significant improvements
across multiple domains including cognition, physical and emotional function, nausea/vomiting,
pain, and fatigue with the largest effect in social function. The authors completed a multivariate
analysis containing all of the EORTC QLQ-C30 scales and found that home care patients reported
higher scores on health related domains after treatment when compared to the hospital patients
after controlling for baseline characteristics.
Strengths of this study include the use of comparison group as well as the application to
practice. The authors indicate that the setting has a “palpable, direct, and immediate impact”
(Jocham et al., 2009, p. 124) on the QoL of dying patients. The primary limitation was the
absence of a non-treatment control group.

K
Jasinska et al. (2010)
The final study included in this review took place in Łódź, Poland in an acute hospital setting.
The primary objective of this prospective outcome study was to evaluate the effectiveness of
palliative end-of-life care on changes in self-assessed QoL in terminal patients according to
carcinoma location. The study included 41 patients, 22 males and 19 females, who had been
admitted to the on-site palliative care unit in the Hospital Bonifratres Convent. Mean age for
participants was 68 years, ranging from 46 to 85 years. Participants were included so long as
their diagnosis included carcinoma in only one location and they were over the age of 18. Patients
were grouped into four broad categories based on carcinoma location: lung, breast, colon, and
prostate. The palliative care unit offered patients with access to a multi-disciplinary treatment team
who provided active, comprehensive care for both the patients and their families at the Hospital
Bonifratres Convent. The study was conducted from February 2007 through April 2009.
Quality of life was assessed using a short-form of the EORTC-QLQ-C30, the QLQ-C15 PAL.
This Polish version includes 15 questions consisting of multi-item scales assessing both physical
and emotional functioning in addition to symptom control and pain management. Patients were
asked to complete the QoL measurement each week during their admission. Though specific
comparisons of two post-admission scores were not noted in the narrative, the authors indicated
292 S. G. PROST

that “the performed activity : : : maintained or even improved” (Jasińska et al., 2010, p. 337)
patients’ subjective QoL. The authors provided no overall statistic related to improvements.
However, Table 2 in the article delineated changes in the QLQ-C15 PAL across cancer groups
from the first day of admission to the last day of admission in the hospital palliative care unit
including the standard deviation for each. Patients were asked one overarching question regarding
global quality of life over the past week at each QLQ-C15 PAL observation. Scores improved
for lung, breast, and colon cancer site patients and were maintained for patients with prostate
cancer.
Strengths of this study include the ancillary analyses related to carcinoma site. The authors
indicated that QoL scores were significantly higher (better) in patients with breast and prostate
cancer when compared to patients with color and lung cancer. These same patients (breast and
prostate cancer) also indicated higher emotional functioning. These types of results may prove
helpful for clinicians working with site-specific carcinomas to develop appropriate care options.
The authors also indicate that the use of the short-form QoL measure likely decreases burden on
vulnerable patients. Authors note the primary limitation of this study was the small sample size.
The primary source of this small sample size was related to problems with recruiting and attrition,
a reoccurring theme in hospice and palliative end-of-life care research.

DISCUSSION AND APPLICATION TO PRACTICE

This review critically appraised six studies using self-assessed QoL as a primary outcome for
the terminally ill across a wide range of settings and treatment inclusions. Results of the review
are mixed. Thus, the hypothesis of hospice and palliative end-of-life care positively impacting
QoL scores in the dying is not clearly supported. Though Cohen et al. (2001) indicates a positive
change in QoL between initial and follow-up assessments for the patients served, no comparison
group was utilized to determine if QoL scores may have changed over time due to other factors.
Jordhøy et al. (2001) employed a cluster randomized controlled trial in efforts to illustrate the
increased QoL associated with palliative end-of-life care when compared to treatment as usual
for patients with life expectancies less than 9 months. Though both groups in the study did
illustrate better QoL scores between observations, no differences were noted between groups.
This result, according to the authors, may be due to the generally high quality of care provided
in the Norwegian Health System across programs. Therefore, readers are unable to determine if
the use of hospice and end-of-life palliative care positively impacts QoL in the dying.
Hanks et al. (2002) indicate positive results in QoL scores for both the full-PCT and the
telephone-PCT groups. Without a non-treatment control group, however, little can be said regarding
better QoL scores in both groups except that both variations of the PCT program prove helpful for
the terminally ill. Secondary analyses were run to evaluate the differences between those patients
who were randomized and those who were not. Their findings suggest that the group of patients
who were not included in the study were different than those included. Hanks et al. note that
these patients were “less well and had a shorter survival time” (p. 738).
Hill (2002) notes several limitations of her study including lower participant census, uneven
distribution of nurses to patients, and variations in how the intervention was applied across
nurses. Hill further indicates a common theme related to questionnaire limitations. Both staff
and patients indicated concerns with question wording, meaning, and terms such as the concept of
“developmental growth” utilized throughout the assessment. Hill further notes problems with the
research design utilized (i.e., sequential groups). She notes, however, that these limitations cannot
be avoided as nurses could not be restricted to treating individual patients. Further complications
included the high percentage of on-call and shift-work nurses and support staff utilized throughout
the study.
 HOSPICE AND QUALITY OF LIFE 293

Jocham et al. (2009) compared hospice care provision across settings. The study results
indicated that home-dwelling recipients had better QoL scores when compared to their hospital
bound counterparts. Though these findings point toward a positive impact of home hospice care
on QoL, the absence of a non-treatment control group again poses threat to a causal inference.
Jasińska et al. (2010) noted a positive outcome related to QoL scores after admission to
palliative end-of-life care similar to Cohen et al. (2001). The authors note increased scores in
global QoL across breast, lung, and colon cancer groups and maintained scores for those with
prostate cancer. Similarly to Jocham et al. (2009) and Cohen et al., however, the absence of a
non-treatment control does not allow for causal inference. Maintenance of QoL, though positive,
may not indicate the efficacy of palliative end-of-life care for all patients.
Overall, several limitations were present across studies that impact review findings including a
lack of rigorous study designs employing the use of a non-treatment control group, small sample
sizes, high rates of attrition, and decreased opportunities for extended follow-up. Many of the
studies included also provided minimal descriptions of the intervention and control groups and
did not disclose detailed assessment protocol.
Several strengths are also present. Each of the studies included in the review utilized self-
reported measures to ensure accurate QoL assessments. Further, the use of at least two observation
points in each study helps limit risk of external causes of QoL score changes. Two studies (Cohen
et al., 2001; Hill, 2002) also utilized qualitative interviews to supplement quantitative findings.
Results from these interviews may help strengthen hospice and palliative end-of-life care programs
and their ability to meet the needs of the dying more effectively.
There is little doubt that the consistent increase in hospice and palliative end-of-life care
available has allowed patients to remain in their homes with loved ones longer and to share their
final moments together (Paul, 2013). None of the studies included in this review indicated that
patients’ self-assessed QoL was negatively impacted; however, do these services adequately meet
the quality-of-life tenet when compared to treatment as usual? The available evidence does not
permit such a conclusion to be drawn.
Social workers often fill roles in health care settings related to end-of-life care. The profes-
sional values of social work directly align with hospice and palliative end-of-life care goals by
ensuring holistic, patient-focused care provided with respect and dignity (Paul, 2013). As such, the
profession is charged with ensuring that patients and their families are treated with unconditional,
positive regard (Rogers, 1957) and that care remains client-centered. Social workers remain pivotal
during provision of hospice and palliative end-of-life care by aiding both the patient and the family
in navigating changing stages throughout the dying process (Paul, 2013). In order to determine
if patients are managing these transitions effectively, social workers must rely on self-assessed
measures, especially the highly individualized and dynamic state of a patient’s quality of life.
Further, using two or more observation points of self-assessed post-admission may provide more
accurate perspectives of client needs. These quality-of-life scores will help assure the client’s
interests are the core of hospice and palliative end-of-life care.
Results of this narrative review indicate inconclusive findings related to the impact of these
services on the self-assessed QoL for the terminally ill, a common theme in hospice and palliative
end-of-life care research. As such, many limitations still exist, and additional research needs to be
undertaken. This matter is becoming increasingly important as specialist palliative end-of-life care
and hospice settings are rapidly increasing worldwide (Quill & Abernethy, 2013; Shahmoradi, Kan-
diah, & Loh, 2012). Subsequent studies ought to employ rigorous experimental designs in order
to compare hospice and palliative end-of-life care to both alternative treatments and non-treatment
control groups. The use of validated self-assessed outcome measures at multiple observations after
admission to hospice and palliative end-of-life care programs will more accurately assess changes
in QoL scores during terminal stages. Larger sample sizes across a variety of municipalities will
also increase the generalizability of findings.
294 S. G. PROST

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